Download Service Provision for Adolescent and Young Adult Cancer Patients

Service Provision for
Adolescent and Young
Adult Cancer Patients
in New Zealand including
Standards of Care
PROVISIONAL
2016
1
TABLE OF CONTENTS
3Background
4
Service Provision for Adolescent And Young Adult Cancer Patients in New Zealand including Standards of Care
4
Who are AYA
4Why?
4
Audience for this document
4
How were the Standards developed
4
Regular review and updating of the Standards
5
Monitoring and Evaluation
5
What distunguishes AYA cancer care from Paediatric and Adult Cancer Care?
9
Summary of Standards
13 Section 1: The Cancer Trajectory
14 Prevention and Early Identification
15 Improved Cancer Awareness
16 Referral to the Right Expertise
17 The Diagnostic Process
20 The Treatment Plan
21 AYA Targeted Cancer Research
23 Treatment Related Issues
25Survivorship
28 Section 2: Developmentally Appropriate Care
29 Psychosocial Assessment and Care
32 Developmental Milestones
34 Caring for Whānau, Partners and the Community
36 AYA’s identified at Risk of Non-Adherence
37 Self-Management
40Transition
42 Confidentiality/Rights/Respect and Trust
43 Care Co-ordination
2
46
49
52
53
55
Section 3: Institutional Support
56
Reference List
Work Force Development
Youth Participation
Age Appropriate Environments
Clinical Performance and Monitoring
BACKGROUND
“Every year 180-200 Adolescent and Young Adult (AYA) New
Zealanders are told that they have cancer. Survival rates for New
Zealand adolescents lag behind international comparisons by 7%. This
means in the past 10 years,49 more 15 – 19 year old New Zealanders
have died of cancer than we would expect. 34 (69%) of these deaths
were Māori or Pacific youths, even though they account for less than
30% of cancer diagnoses in this age group”1 AYA Advisory Group 2013 CTAG report
In response to the above findings, in 2013 the Minister of Health announced the allocation of additional
funding over the next two years for AYA cancer care. The funding was given to determine and direct
improvements in cancer services for AYAs in NZ. A key initiative of this funding was the establishment of the
AYA Cancer Network Aotearoa which oversees national strategic direction and leadership of AYA cancer
care.
A key focus for the network is to develop a comprehensive five year national strategy for AYA cancer
care. This strategy will include a proposed model of care that ensures AYAs diagnosed with cancer have
equitable access to high quality medical and psychosocial care regardless of their domicile.
To ensure the strategy is well informed and based on strong evidence and best practice, the development
of the document ‘Service Provision for Adolescent and Young Adult Cancer Patients in New Zealand
including Standards of Care’ has been a priority. The level of service that AYAs with cancer should have
access to is described in the document. It will also help guide quality improvement initiatives locally and
nationally. The standards will sit alongside the eleven existing Adult Oncology Tumour Standards released by
the Ministry of Health in 2012 and 2013.
Why have we been able to
equalise outcomes for 0-14
year old Pacific and Māori
kids but not for AYA’s?
~AYA Advisory Group
Member
AYA CANCER
NETWORK AOTEAROA
- Connecting professionals, patients, carers
and other stakeholders with an interest in
improving AYA cancer outcomes.
- Leading collaboration for service
development, across the continuum of
cancer care for the AYA
3
SERVICE PROVISION FOR ADOLESCENT AND
YOUNG ADULT CANCER PATIENTS IN NEW ZEALAND
INCLUDING STANDARDS OF CARE
WHO ARE AYA?
Terms such as ‘youth’, ‘rangatahi’, ‘teenagers’, ‘adolescents’, ‘young adults’ and ‘young people’ are often
used interchangeably to describe both the whole group and various sub groups from age 10 to late 20’s.
The age group focus of these standards is between 12 and 24 years. This is consistent with the age group
defined in two youth government guiding documents from 2002: The Youth Development Strategy and
Youth Health Action Plan.2 The upper age limit should be indicative and not absolute with some flexibility
dependent on the disease type and developmental needs of young adults with cancer aged up to 30
years.
A DOCUMENT DESCRIBING BEST PRACTICE IN SERVICE PROVISION FOR AYA
CANCER PATIENTS IN NZ INCLUDING STANDARDS OF CARE - WHY?
It is widely recognised internationally and in NZ that the AYA cancer population have distinct and
unmet needs. AYAs can be described currently as being understudied and underserved.3,4 AYAs sit on
the periphery of cancer care and often fall into “no man’s land” between paediatric and adult cancer
services.3
The goal of this document is to achieve excellence in AYA cancer care in NZ. Core elements of AYA cancer
care are captured, described and supported by evidence in this document. These standards are a move
away from a model of care which traditionally centred on trying to mould AYAs to fit into existing structures
and services. The evidence suggests that this doesn’t work and that there is a need to explore innovative
ways of delivering services to reach and meet the distinct needs of the AYA population. This includes
collaboration across individuals, groups, services and organisations. What we must continue to ask ourselves
is “what can be done better, and if necessary, differently?” AUDIENCE FOR THIS DOCUMENT
The intended audience includes all organisations/institutions that work with AYAs with cancer, the
education sector, health sector, social services and Non-Governmental Organisation (NGO) providers.
Together a real difference can be made. The standards are not designed or intended for consumer use. The
network will consult with consumers and summarise the document for the AYA audience and their whānau,
utilising various modes of media to optimise engagement.
HOW WERE THE STANDARDS DEVELOPED?
The standards were developed by a skilled working group representing the wider multidisciplinary/
multiagency AYA cancer care workforce. The group was chaired by a lead clinician, who had access to
expert advisors in key content areas. Consumer input was sought through a nationally representative youth
advisory group facilitated by CANTEEN. The standards recognise the need for evidence based practice.
International literature, guidelines and existing standards were reviewed and utilised. Where no clear
evidence was available expert opinion was sought.
REGULAR REVIEW AND UPDATING OF THE STANDARDS
As the speciality of AYA cancer care in NZ develops and services progress, the standards will reflect this.
They will stay live, with revisions capturing new evidence and approaches to care as it becomes available.
They will be reviewed every two years.
4
MONITORING AND EVALUATION
Due to the relatively small number of AYAs diagnosed per year in each region, there is a need to address
AYA cancer care from a national framework. The AYA cancer network will provide clinical oversight and
leadership, overseeing the development and auditing of the standards of service provision for AYA cancer
patients in New Zealand.
A monitoring and evaluation framework will be developed in consultation with the four regional cancer
networks and the national child cancer network. This will include a stripped down standards list as a tool
to be used alongside the monitoring and evaluation tool. It will assist service providers in benchmarking
delivery of care against best practice for AYA cancer patients and it will identify service areas of strength
and need.
Consideration of modes of monitoring with regards to time and cost need to be undertaken to ensure
feasibility and functionality of the monitoring framework. Data may be sourced from clinical audits, patient
and whānau experience surveys, data bases/registries, self-evaluation, clinical research projects, existing
organisational documentation, and environmental scans. For ease, every effort will be made to try and
align with existing or emerging data capture. However this must be balanced with the need to track
performance over time. Consumers will be involved in the evaluation process.
WHAT DISTINGUISHES AYA CANCER CARE FROM PAEDIATRIC AND ADULT
CANCER CARE?
Over the past 20 years, the improvement in survival rates for the AYA cancer population have not been as
significant as those seen in either paediatric or adult cancer care.5,6,7,8 The reasons for this ‘survival lag’ are
multifactorial. They can be divided into ‘specific factors related to the tumour and to the patient, as well as
access to and use of health care resources’.9 A number of the identified contributory factors are described
below.
DIFFERENCES IN DISEASE BIOLOGY.
AYA cancers are biologically different to paediatric and older adult cancers. The spectrum of cancers that
present in this age group is different, as are tumour and host biology factors.
From 2000-2009, the five most common cancers affecting AYA patients in New Zealand were (in descending
order) melanoma, gonadal germ cell tumours, Hodgkin Lymphoma, Acute Lymphoblastic Leukaemia and
Non Hodgkin Lymphoma.10 This incidence profile is different to that of both paediatric oncology, which
includes significantly higher numbers of embryonal tumours e.g. Neuroblastoma and Nephroblastoma, and
that of older adult oncology in which epithelial cancers account for greater than 85% of the total cancers
such as breast and colorectal carcinoma.11 Hodgkin Lymphoma, Testicular Cancer, and Bone Sarcoma
are known to have their peak incidence rates during the AYA years.9
Examples of distinct tumour biology in AYA tumours include:11
• Younger breast cancer patients are more likely to have less hormone sensitive tumours of high grade
and a higher frequency of lymph node spread.
• Younger colorectal cancer patients have the highest incidence of microsatellite instability and heritable
forms of colorectal carcinoma.
• When compared to paediatric patients, AYA patients with Acute Lymphoblastic Leukaemia (ALL) have
a higher incidence of ALL subtypes that are associated with a poorer prognosis, these include: T Cell
ALL, Philadelphia positive ALL, and Philadelphia–Like ALL.12
5
6
TOLERANCE OF THERAPY
Age related differences in host biology have been identified in AYA cancer patients. AYA patients with
ALL are noted to have different treatment toxicity profiles when compared to younger patients such as
higher rates of osteonecrosis.13 AYA age group specific treatment toxicities have been associated with
pharmacokinetic differences in hormone regulation, physiological differences with volume of distribution
(e.g. adipose vs lean body weight), protein binding and hepatic and renal function.11
LOW ACCRUAL ONTO CLINICAL TRIALS AND RESEARCH
Clinical trial enrolment is associated with improved survival.14 However enrolment rates for New Zealand
AYA remain low. Relevant barriers include a lack of age and diagnosis specific clinical trials, poor referral
rates and policy and regulatory barriers regarding age and access.15 Poor clinical trial enrolment in the AYA
age group results in a lack of donated tissue specimens for translational research. This hampers knowledge
about AYA tumour biology.
OPTIMAL TREATMENT SITE AND DIFFERENCES IN TREATMENT STRATEGIES
There is emerging evidence to suggest that where you are treated influences survival outcome for AYA
cancer treatment, with patients treated within specialist centres having better overall rates of survival.16,17
Enhanced clinical trial enrolment opportunities are one example of the perceived benefit of receiving care
in a specialist treatment centre.9
The consideration of a range of treatment strategies for AYA patients with a particular disease can improve
the probability of cure. AYA ALL treatment has particular relevance with this approach given a range of
evidence based philosophies exist. Enhanced survival when AYA patients are treated on ‘paediatric style’
protocols has been reported18,19 whilst other evidence shows that adult style treatment can be associated
with equivalent survival when the patient is treated in a specialist treatment centre.20 Collaboration
between departments to ensure the most appropriate treatment is delivered in the most appropriate
treatment site is essential to achieving best practice for AYA cancer patients.
DIAGNOSTIC DELAY
When compared to paediatric and older adult patients, AYA cancer patients are more at risk of diagnostic
delay.21,22 This is due to a number of factors which include the minimisation and ignoring of symptoms by the
AYA, a delay in seeking medical attention due to access issues and a lower level of suspicion of a cancer
diagnosis by health care providers.23,24
DEVELOPMENTAL STAGE AND ADHERENCE
The psychosocial care needs of AYAs with cancer tend to be broader in scope and intensity than in
younger and older patients because of the many emotional, developmental and social changes and
transitions that occur during this stage of life. This impacts on overall management of the AYA with
adherence becoming more of an issue during the adolescent years; some studies reporting up to one half
of AYAs are non- adherent with oral chemotherapy.25,26
These contributory factors are important issues that are addressed in the Standards of Care document.
Placing them in the appropriate context for AYA cancer patients in New Zealand will be paramount in
creating a functional and relevant AYA cancer service framework.
7
The standards document is divided into three sections. The sections have been designed to
complement each other, all three being integral to enhancing outcomes.
Section One, The AYA Cancer Trajectory, focuses on aspects of care that ensures all AYA with
cancer regardless of domicile, receive best practice clinical management and treatment for their
disease.
Section Two, Developmentally Appropriate Care, focuses on aspects of care that ensure AYAs
receive comprehensive and developmentally appropriate care that facilitates best medical and
psychosocial outcomes.
Section Three, Institutional Support, focuses on the systematic changes required to ensure AYA
cancer care is recognised as a specialised area of cancer care.
The diagram below summarises key components of best practice for AYA cancer care as described
in the standards.
8
SUMMARY OF STANDARDS
Below is a summary list of the standards included in each of the three sections: The AYA Cancer
Trajectory, Institutional Support, and Developmentally Appropriate Care.
SECTION 1: THE AYA CANCER TRAJECTORY
Prevention and Early Detection
Standard 1.1 Cancer prevention education and interventions will be clearly communicated to AYAs,
Whānau and Health Care Providers. Standard 1.2 Early symptoms of cancer will be recognised by the AYA and health care provider to
avoid delayed diagnosis.
Referral to the Right Expertise
Standard 2.1 When a cancer diagnosis is suspected, all AYA will be referred to the appropriate tumour
group expertise, and where available, the appropriate Multi-Disciplinary Meeting (MDM).
Standard 2.2 All AYA Patients that are referred with a high suspicion of cancer will commence their
treatment within 21 days.
The Diagnostic Process
Standard 3.1 Investigations undertaken during the diagnostic stage will comply with best practice
recommendations as described in the national tumour standards.
Standard 3.2 Sedation and other techniques to reduce procedural distress will be made available to
all AYA cancer patients.
The Treatment Plan
Standard 4.1 All AYA cancer patients will have a documented treatment plan that adheres to best
practice recommendations.
AYA Targeted Cancer Research
Standard 5.1 All AYA cancer patients should be offered the opportunity to participate in targeted AYA
cancer research.
Standard 5.2 All AYA cancer patients will be offered the opportunity to enrol in available diagnostic
and therapeutic clinical trials.
Treatment Related Issues
Standard 6.1 Prior to treatment, all AYA cancer patients need to be informed about the potential risks
of treatment related infertility, and where appropriate, fertility preservation procedurescompleted.
Standard 6.2 AYA cancer patients will have access to palliative care services. Where appropriate,
access will start at diagnosis
9
Survivorship
Standard 7.1 Following completion of treatment, all AYA cancer patients should have a structured
follow up plan that focuses on the multifaceted health issues of survivorship.
Standard 7.2 All AYA cancer patients and relevant health care providers should be provided with an
end of treatment document.
SECTION 2: DEVELOPMENTALLY APPROPRIATE CARE
Psychosocial Assessment and Care
Standard 8.1 All AYA cancer patients will have a psychosocial assessment at diagnosis and updated at
regular intervals to inform their care plan.
Standard 8.2 All AYA cancer patients will have access to psychology support from diagnosis.
Developmental Milestones
Standard 9.1 All AYA cancer patients receive support and care to ensure their normal developmental
process continues throughout their cancer journey.
Caring for whānau, partners and the community
Standard 10.1 Whānau, partners and the support network of an AYA diagnosed with cancer will have
their practical and emotional needs attended to and addressed.
AYA’s identified at risk of non-adherence
Standard 11.1 AYA’s at risk of non-adherence are identified and prioritised for intensive case
management.
I was numb. I mean what did cancer mean for my
plans for university? I was already planning my
courses. What about life and marriage and even kids?
I hadn’t thought about kids before but now I had to.
And I had to think about how to tell my girlfriend.
What would it mean for our relationship?
~AYA Patient
10
Self-Management
Standard 12.1 All AYA cancer patients are supported to self-manage their own health care as they mature.
Standard 12.2 All AYA cancer patients and whānau are provided with developmentally appropriate cancer
related information.
Transition
Standard 13.1 All AYA cancer patients will be supported as they transition across services.
Confidentiality/ Rights / Respect and Trust
Standard 14.1 The rights of the AYA cancer patient are respected. A key focus is to establish confidentiality
and trust.
Care Co-ordination
Standard 15.1 All AYA cancer patients and whānau will be provided with access to a nominated health
care professional that will co-ordinate their care. Standard 15.2 All AYA cancer patients will have access to co-ordinated multidisciplinary and multiagency
care
SECTION 3: INSTITUTIONAL SUPPORT
Governance and Clinical Leadership
Standard 16.1 There is a governance structure with identified clinical leadership that provides direction and
oversight for AYA cancer care.
Work Force Development
Standard 17.1 Health care professionals and the supportive care workforce who work with AYA cancer
patients are trained to deliver developmentally appropriate care.
Youth Participation
Standard 18.1 AYA cancer patients are provided with the opportunity to actively participate in the
development, implementation and evaluation of regional and national AYA cancer care programmes and
services.
Age Appropriate Environments
Standard 19.1 The AYA cancer patient will be treated in a health care environment that is developmentally
appropriate.
Clinical Performance & Monitoring
Standard 20.1 A nationally agreed AYA cancer dataset will be collected within each DHB.
11
12
1
SECTION
THE CANCER TRAJECTORY
Over the past 20 years, the improvement in survival rates for the
AYA cancer population has not been as significant as those
seen in either paediatric or adult cancer care. Differences
in biology, diagnostic delay, tolerance to therapy, location
of treatment, and discrepancies in treatment strategy all
contribute to poorer outcomes. This section focuses on aspects
of clinical management and care for AYAs with cancer with
a focus on best practice, starting before diagnosis, through
treatment, survivorship and where necessary, end of life care.
13
PREVENTION & EARLY IDENTIFICATION
RATIONALE
A number of malignancies are associated with
preventable risk factors that are relevant for AYAs in
New Zealand. Although many of these cancers
tend to affect the older age groups, their
associated health related behaviours can begin
during the AYA years. Lung cancer, cervical
Cancer prevention education
cancer and melanoma will be discussed as
and interventions will be clearly
examples.
Lung Cancer: Encouragingly, New Zealand
communicated to AYAs,
Health Survey data shows that smoking rates
Whānau and Health Care
for 15 -24 year olds have dropped from 23.4% in
2006/7 to 18.5% in 2014/15.27 However, lung cancer
Providers.
remains New Zealand’s leading cause of cancer
death.28 On average, young people in New Zealand start
smoking at 13-14 years of age.29 Family members are their
main source of tobacco, thus circumventing the legal minimum age to
purchase tobacco of 18 years.30
Cervical Cancer: The association of HPV and cervical and vaginal carcinoma is well established. HPV
affects an estimated 80% of sexually active women with the peak incidence of infection occurring
in women between 16 and 20 years old.31 Of particular note, Māori females have a twofold higher
registration rate for cervical cancer and a threefold higher mortality rate.
The HPV immunisation program was commenced in New Zealand in 2008 and provides an important
opportunity for the primary prevention of cervical cancer. A recent review of HPV immunisation
activity in New Zealand showed approximately 55% of eligible females have been immunised, falling
short of the 75% level required for successful herd immunity.32
Melanoma: New Zealand has the highest incidence of melanoma in the world. Although melanoma
rates are comparatively lower for the NZ AYA population when compared to older age groups,
repeated sun exposure at a young age significantly contributes to melanoma risk in later life. Artificial
tanning methods such as sunbeds have been associated with melanoma, especially for those people
who are exposed before 35 years of age. They are currently not recommended for people under 18
years of age.33
STANDARD 1.1
GOOD PRACTICE POINTS
1. Support existing health promotion/public health campaigns targeting AYAs in topics such as:
cigarette smoking, alcohol use, sun exposure, safe sex practices, HPV immunisation, healthy eating
and physical activity.
2. Health promotion campaigns should also target whānau and the community
a. Where health related behaviours occur in the AYA’s wider environment e.g. cigarette smoking in the household.
b. Whānau are made aware of risk factors that predispose AYA to future cancers and therefore providing guidance to AYA around these things e.g. encouraging sunscreen use, smoking cessation and contraception.
3. Education targeting barriers to HPV immunisation (e.g. parental and health provider
misconceptions) should be provided to AYAs, whānau and health providers.
4. Opportunistic health screening should be undertaken by health providers (e.g. school nurse) when
appropriate, focussing on issues related to preventable cancer risk factors.
5. Primary care and youth health Initiatives focussing on reducing barriers to accessing health care
services for AYA e.g. sexual health and drug and alcohol counselling will be supported by the
AYA Cancer Network Aotearoa.
14
IMPROVED CANCER AWARENESS
RATIONALE
STANDARD 1.2
AYA cancer patients are at increased risk
of delayed diagnosis. This risk is heavily
influenced by the AYA’s lack of awareness
Early symptoms of cancer will
of cancer symptoms.23,24,34 In a recent study
be recognised by the AYA and
of 49,000 cancer patients in the United
Kingdom, those patients in the 15-34 year age
health care provider to avoid
group, when compared to older age groups,
delayed diagnosis.
were noted to have the lowest rates of cancer
symptom awareness, whilst having the highest
number of identified barriers to presentation to a
health care provider.21 In an analysis of a younger patient
cohort, an Italian study of presentation patterns in paediatric
and adolescent solid tumour patients showed a significantly longer median symptom interval (137 days vs 47 days, p<0.001) for those patients aged
>15 years, when compared to the 0-14 year age group.22
Access to care barriers contribute to diagnostic delay for AYA cancer patients. A study investigating
cancer awareness in 420 British adolescents identified emotional issues as the most common barriers
to presentation. These included anxiety about what the doctor will find, embarrassment and fear.
Service barriers also included difficult communication with the doctor, and practical barriers such as
transport difficulty.23 Contextual barriers such as ethnicity group, gender and level of socioeconomic
deprivation can also affect health seeking behaviours for AYA.35
Referral delay is influenced by the rarity of cancer in the AYA population and the comparatively
different cancers that present in this age group.34 A Scottish study analysing over 6000 GP
consultations with adolescent patients showed that only 4% of consultations included possible ‘early
warning’ cancer symptoms. The study suggested that a GP may only diagnose one AYA cancer
during their working life.24 Thus, due to lack of exposure, clinical suspicion can be low.
Cancer symptom awareness programs have been proven to enhance cancer awareness in targeted
populations, as evident in a recent randomized controlled trial investigating an AYA cancer symptom
awareness program in secondary school students.36,37
GOOD PRACTICE POINTS
1. AYA targeted cancer symptom awareness programs need to be developed and implemented.
Programs should be based on evidence, incorporate youth health promotion principles and
include an evaluation component.
2. A variety of national education, training and communication initiatives should be considered,
targeting youth health and primary care providers to improve awareness of AYA cancer risk and
referral practices.
3. The AYA Cancer Network will liaise with youth health and primary care providers to support in
initiatives reducing barriers to accessing health care for AYA patients.
15
REFERRAL TO THE RIGHT EXPERTISE
STANDARD 2.1
When a cancer diagnosis is
suspected, all AYA will be
referred to the appropriate
tumour group expertise,
and where available, the
appropriate MDM.
STANDARD 2.2
All APA Patients that are
referred with a high suspicion
of cancer will commence their
treatment within 21 days.
RATIONALE
Timely access to specialist treatment centres can have a significant bearing on the survival outcomes of
an AYA with cancer.16,17,­38­ Involvement of tumour group specific expertise is essential and a key component
of best practice for AYA cancer care. Where a suspected cancer diagnosis is rare and/or complex and
no tumour MDM exists, national or international expertise should be sought and collaborative practice
promoted. This includes sharing clinical knowledge across departments i.e. paediatric and adult services
and across DHB boundaries.
GOOD PRACTICE POINTS
1. Referrers should have access to a list of national MDMs and tumour group specific experts. This should
be easily locatable and updated regularly, and include information on referral processes along with
contact information. Further advice and information can be sought through the AYA regional cancer
service.
2. On referral to the MDM, an automatic notification should go through to the regional AYA cancer
service. This ensures early involvement of an AYA cancer key worker and facilitates the process of
referral to the right tumour MDM or tumour based experts.
3. To ensure efficient and timely service provision, referral information should be complete. MDM referral
communications should include:
a) The patient’s name, date of birth, NHI number, ethnicity and contact details.
b) Clinical history
c) Details of investigations already undertaken and their findings and any outstanding requested investigations.
d) Identified psychosocial risk factors
e) What has been explained to patient and family or whānau so far?
f) Whether other referrals have been made.
4. Where a suspected cancer is rare and/or complex, additional expertise might need to be sought.
Professionals with additional expertise should be invited to attend and participate in MDM meetings as
required. Key time points for involvement include the diagnostic period, the initial treatment planning
stage and any key treatment review periods.
5. MDM facilities should provide technology that facilitates remote video conferencing (VC) dial in, to
ensure contribution from national and international experts can occur.
16
THE DIAGNOSTIC PROCESS
STANDARD 3.2
STANDARD 3.1
Investigations undertaken
during the diagnostic stage
will comply with best practice
recommendations as described
in the national tumour standards.
Sedation and other
techniques to reduce
procedural distress will be
made available to all AYA
cancer patients
RATIONALE
National tumour standards exist for 11 tumour groups and describe the level of service that a person
with cancer should have access to in New Zealand.39 If the suspected cancer lies outside of the
recommendations of these guidance documents, then National Child Cancer Network assistance is
available for paediatric tumour types and regional cancer services can offer guidance on rare adult
tumour types.
Initial reference to such guidance may prevent the requirement for re-biopsy and the risk of diagnostic
delay. Examples of common AYA cancers that have specific biopsy recommendations in the tumour
standards include lymphoma (where excision nodal biopsy is preferred technique), sarcoma (initial
consultation with a sarcoma surgeon is recommended to ensure biopsy is undertaken within planned
resection field) and melanoma (where a 2mm excision margin is recommended).38,40,41
During procedures AYA patients can face difficulties with anxiety, pain and general psychological distress.
If left unrecognised, this can contribute to poor tolerance of procedures and may result in changes in the
way AYA manage pain.42 Procedural distress may also compromise the quality of biopsy specimens and
imaging results. Procedural sedation, providing preparatory information and psychological interventions
can reduce the distress experienced for an AYA by providing a sense of predictability and control.42
When I was due for a BMA I had to
psych myself up. They were so painful
and I was just expected to manage it.
~AYA Patient
17
GOOD PRACTICE POINTS
1. Appropriate imaging facilities, including timely access to advanced imaging modalities such as PET
scans, are available to AYA cancer patients.
2. All AYA cancer patients with a histological diagnosis of cancer have their diagnosis reviewed and
confirmed by a specialist pathologist affiliated to the appropriate MDM.
3. When a histological diagnosis is not forthcoming, samples will be sent for second opinions to national
and international pathologists with expertise in the suspected tumour type.
4. For complex AYA cancer diagnoses, advice on investigations recommended for diagnosis can be
sought from designated local and national AYA and tumour group specific experts. The AYA cancer
service has contact details and will also assist in facilitating this process.
5. The option of procedural sedation or general anaesthesia will be considered, discussed and offered
where appropriate with all AYA cancer patients. This must be prior to any diagnostic procedures that
are anticipated which may cause pain or distress, such as bone marrow aspirates, lumber punctures
and nasogastric or PICC line insertion. This is particularly relevant to tumour groups where procedures
are expected to occur frequently.
6. All AYA patients will have access to professionals (i.e. play specialists, psychologists) with expertise
associated with reducing procedural distress. This expertise may include distraction techniques,
relaxation therapy, meditation and other strategies aimed at ensuring the young person has ageappropriate support to manage pain and /or distress.
The hardest thing of all is it has probably taken away so
many years of my life, of what I wanted to do and has
really knocked my confidence. I has taken away a lot of
dreams.
~AYA Patient
18
19
THE TREATMENT PLAN
RATIONALE
For an AYA cancer patient, best practice treatment
includes combining the most appropriate expertise,
the most appropriate treatment environment,
and the most age appropriate psychosocial
care. For example, a 16 year old patient with
metastatic melanoma can have therapy
All AYA cancer patients will
directed by the adult medical oncology
have a documented treatment
team, with the paediatric oncology team
providing
an age appropriate treatment
plan that adheres to best
environment and out of hours support, with the
practice recommendations.
AYA keyworker coordinating psychosocial care.
The Teenage Cancer Trust’s ‘Blueprint of Care’
advocates for flexibility and ‘significant changes
in attitude’ in order to overcome historic barriers to
cross departmental collaboration.43
There is strong evidence to demonstrate that patients
treated within specialist centres have better overall rates of survival.16,17,38 An example of this is described in a Canadian study which
examined the treatment site for AYA cancer patients. The most significant survival advantage was noted for
lymphoma patients if they were treated in a specialist treatment centre16 with higher clinical trial enrolment
rates being identified as a contributing factor. The success of this type of care arrangement is dependent
on early and repetitive communication between relevant services in a multidisciplinary team environment.43
STANDARD 4.1
GOOD PRACTICE POINTS
1. Treatment plans that have a strong evidence base and acknowledge current funding criteria is the
expected standard of care for AYA patients. Pharmac’s Exceptional Circumstance Framework can
assist the treating team in determining whether unlisted medications can potentially be funded e.g. via
the Named Patient Pharmaceutical Assessment (NPPA) pathway.
2. Regarding treatment planning for complex cancer diagnoses, review of the existing tumour standards
and consultation with regional, national, or international tumour group experts should occur.
3. For all AYA cancer patients, transfer of medical care to a treatment centre specialising in that specific
tumour type, or joint case management with the specialist treating team should be strongly considered.
4. A number of key issues influence the decision making process regarding choice of treatment site. These
include the type of cancer, clinical trial access, school attendance, reliance on parents for decision
making, geographical considerations and AYA/Whānau preference. AYA cancer services play a key
role in facilitating and supporting health professionals and AYA/Whānau in making the decision about
where AYA are treated.
5. For AYA cancers where a number of different treatment philosophies exist- such as Acute Lymphoblastic
Leukaemia in AYA, discussions should occur between specialist teams to ensure treatment approaches
are harmonised to establish uniform best practice.44
6. Members of different specialities with expertise relevant to the AYA with cancer should be repeatedly
invited to MDM’s at different time-points of therapy to provide a comprehensive treatment perspective.
7. At a minimum, all relevant AYA cancer patients should meet the Faster Cancer Treatment targets. Many
of the cancers experienced by AYA should be diagnosed and treated within a shorter time period.45
8. All AYA cancer patients should know who the clinical lead for their care is. This person co-ordinates and
oversees the clinical management of the AYA’s care including across specialities and region.
20
AYA TARGETED CANCER RESEARCH
RATIONALE
Improved AYA cancer research is pivotal to
attaining better long term outcomes for
AYA with cancer.46
Recently, the Australian Youth
Cancer Service recruited 101 health
All AYA cancer patients should be
professionals and consumers to
undertake a ‘value weighted online
offered the opportunity to participate
survey’ to evaluate AYA research
in targeted AYA cancer research.
priorities. The research domain
that was given the most priority was
Biomedical and Clinical Medicine
Research, with ‘cancer control and
outcomes research’, ‘anticancer treatment’
and ‘early detection, diagnosis and prognosis’ being
specific areas of identified need within this domain.47
The Progress Review Group for AYA oncology (National Cancer Institute, USA) have recommended 5
strategies to enhance knowledge within the medical domain of AYA research, these include: 11
• Analyse AYA data in published AYA trials and databases
• Increase specimens available for translational research
• Increase clinical trial activity in AYA patients
• Focus on the cancers with most impact
• Improve understanding of host/tumour biology.
STANDARD 5.1
Within the psychosocial research domain, identified research topics include: Survivorship, fertility,
psychosocial assessment tools/care, palliative care, lifestyle management, psychological and physical
therapy efficacy.47,48,49
Research into AYA health services includes analysis of the degree to which AYA specific services ‘add
value’ to an existing oncology service structure.48 To optimally assess efficacy, the appropriate metrics
need to be used to measure effect.50 Providing such ‘proof’ for the benefits of a new service can assist in
enhancing health care provider engagement at the clinician and administrator level.
However, a number of barriers to AYA cancer research need to be overcome in order to undertake high
quality AYA research. Difficulties include comparatively small numbers, the heterogeneity of the AYA
population with regards to tumour type and age range, low accrual numbers complicated by recruitment
and retention, and bias associated with survey research.49
GOOD PRACTICE POINTS
1. Health providers should be encouraged to undertake AYA research within the domains described
above.
2. Institutional and Cancer Advocacy Group support should be sought to assist funding for AYA research
projects.
3. Collaboration with other departments, regional health services, and international AYA cancer service
partners should be considered when contemplating AYA research to enhance study participant
numbers.
4. AYA tissue banking protocols should be established to provide specimens for biological research
purposes.
5. The establishment of a national AYA research advisory group should be considered with the aim to
provide advice and leadership in guiding the direction and priorities for AYA cancer research in NZ.
21
RATIONALE
Gains in survival rates over the past 20 years have not
been as marked for the AYA cancer population as
they have been for the paediatric or adult cancer
groups. Poor clinical trial enrolment rates are
regularly cited as a reason to explain this.5,6,19,51,52
All AYA cancer patients will
A number of barriers to clinical trial enrolment
exist for AYA cancer patients. These include
be offered the opportunity to
systemic barriers such as the lack of available
enrol in available diagnostic
clinical trials existing for an AYA at their treatment
site, poor health provider knowledge on the
and therapeutic clinical trials.
availability of clinical trials, lack of age appropriate
clinical trial information and enrolment ineligibility
due to age.5,6,15 In a recent systematic review of clinical
trials in the United Kingdom, the justification for stringent age
eligibility criteria was noted to have ‘little scientific evidence’.51
STANDARD 5.2
From a systemic perspective, strategies to improve clinical trial enrolment in AYA patients include:
• Enhanced collaboration between paediatric, adult and AYA cancer services to increase access and
accrual to open clinical trials.5 In 2014, the National Clinical Trials Network (NCTN) was launched in the
United States, it facilitates the running of clinical trials in partnership between tertiary and community
oncology services and reduces regulatory barriers in opening paediatric oncology based clinical trials
e.g Children’s Oncology Group (COG) trials, in adult institutions and vice versa.9
• Modification of age eligibility criteria. Since 2000, increased catchment of AYA patients in COG trials
has been achieved for Hodgkin’s Lymphoma, Acute Lymphoblastic Leukaemia (ALL) and Sarcoma
patients by modifying age eligibility criteria.51,52 The COG Adolescent and Young Adult Committee have
contributed significantly to this process.
• The creation of targeted AYA clinical trials. An example of this is the intergroup ALL trial ‘C10403’ which
tested a regimen based on the paediatric high risk ALL approach from COG in patients aged between
16-39 years of age.9,19
• Increased referrals of AYA patients to centres that are known to have open clinical trials.6,53
• Increase AYA oncology education in medical school and specialist training to increase health provider
awareness of this issue.6
GOOD PRACTICE POINTS
1. The promotion of open communication between institutions is essential in creating a collaborative
environment that aims at advocating for, and increasing enrolment of AYA patients in clinical trials.
2. Health care providers should be aware of available clinical trials (Locally, nationally, and internationally)
that their AYA patient may be eligible for. This ideally will be facilitated by having an updated national
AYA clinical trials database, as exists for NZ paediatric oncology patients through the National Child
Cancer Network.
3. Some clinical trials are only open in specific centres. All AYA patients should have access to such trials
regardless of region of domicile.
4. Direct contact with pharmaceutical companies and clinical trial groups may facilitate entry of AYA
patients outside of age limit cutoffs.
5. Age appropriate clinical trial information should be provided verbally and in writing to the AYA cancer
patient and repeated communication should be offered prior to any decision making time point.
6. The development of a national Clinical Trials Working Group should be considered to explore and
support the development of strategies and tools to improve/support access and participation onto
clinical trials for AYA cancer patients in NZ.
22
TREATMENT RELATED ISSUES
RATIONALE
AYA perceive information about future fertility
as a priority, yet they are often dissatisfied
with how this topic is addressed (or not)
by health providers.4 Up to 30-60% of
cancer survivors do not recall fertility
Prior to treatment, all AYA
discussions at diagnosis.54 Health
care professionals may be confused
cancer patients need to be
about the effect some therapies
informed about the potential
have on fertility, which fertility
treatment options are considered
risks of treatment related
standard and available, and how to
infertility, and where appropriate,
access fertility preservation especially
when it is urgently required.52
fertility preservation procedures
Fertility related distress is common
completed.
for AYA cancer patients during their
treatment and beyond. The prospect of
therapy related infertility is described for many as
being as painful as facing the cancer diagnosis itself.54 In survivorship, an unfulfilled desire to have children is associated with poorer mental health for both men and women diagnosed with cancer in the reproductive
age.55 As cure rates improve, this topic has become increasingly relevant.
Evolving priorities during adolescence and young adulthood provide a unique context for fertility
discussions in this age group. Although the AYA patient may not state a desire for future children at the
time of diagnosis, a substantial number of patients (17% in one AYA cancer survivor study) may change
their mind several years after the treatment.55 This may be partly explained by embarrassment, clouding
of understanding at a time of distress, or not having previously considered family planning at the time of
diagnosis. It is important to offer the AYA patient repeated fertility discussions that are sensitive and take into
account the developmental age of the AYA, while recognising the timeframes for starting treatment.
STANDARD 6.1
GOOD PRACTICE POINTS
1. The New Zealand Fertility Preservation Guideline was published in 2014.56 This document outlines the
fertility preservation techniques that are available and funded in New Zealand and should be accessed
by health professionals when looking for local fertility preservation guidance.
2. A ‘reasonable suspicion’ of cancer should prompt initial fertility preservation discussions to allow timely
fertility service referral.
3. The discussion and documentation of fertility issues at the time of diagnosis is a mandatory component
of informed consent prior to treatment commencement.
4. The AYA patient should have fertility risk discussions and preservation options communicated to them in
age appropriate language, acknowledging differences in understanding of longer term consequences
and the possibility that the AYA patient may change their views in subsequent years.
5. The mechanisms by which a cancer diagnosis and its treatment modalities and dose intensities can
contribute to infertility risk are well known. ‘Fertility risk calculators’ are available via websites such as
fertile hope and numerous publications exist to assist health providers in accurately discussing this issue
with AYA patients.
6. Every effort should be made to acknowledge cultural and religious differences in communication and
facilitation of fertility preservation techniques such as storage of embryos.
Whenever I thought about it I just started crying...
Mum told me we’d get through it again.
~AYA Patient
23
RATIONALE
AYA cancer patients and their whānau, and in particular
those who may not survive their illness, face a challenge
in receiving age appropriate and adequately
resourced palliative care services. Palliative care
aims to ‘improve the quality of life for AYA patients
and their whānau by controlling symptoms and
AYA cancer patients will have
alleviating physical, social, psychological, and
access to palliative care
spiritual suffering’.57
services. Where appropriate,
Palliative care team members have expertise
in
complex symptom management, and in
access will start at diagnosis.
particular pain management. When utilised early
in the treatment period, palliative care services can
be greatly beneficial to the AYA patient. Concurrent
involvement of the palliative care team as part of the broader
treating team at diagnosis can ‘normalise’ their involvement and reduce barriers to optimal palliative care in the longer term.58
Health care providers can feel uncomfortable and under skilled in discussing palliative care related issues
with AYAs. Reasons for this include not being comfortable with what to say to the AYA or their family, not
wanting to give the perception of ‘giving up’, or due to the belief that the AYA is ‘best not knowing’.43,58
For those patients where curative therapy is no longer appropriate, it is essential that end of life (EOL)
care is considered and discussed with the AYA cancer patient well before the need for it eventuates.57,58,59
The lack of conversation about EOL care can create a sense of isolation, fear, and anxiety for AYAs,60
despite evidence to suggest that they are comfortable in talking about these issues and that their views
may not be completely known to their whānau.61 The development of an end of life care plan should
be undertaken in partnership with the AYA, and include utilisation of existing community palliative care
services, hospice facilities and respite care.
STANDARD 6.2
GOOD PRACTICE POINTS
1. All AYA cancer patients are offered early access to palliative care services when there are complex
symptom control issues, when prognosis is guarded at diagnosis, when curative treatment cannot be
offered, or if curative treatment is declined.
2. Palliative Care services need to be introduced early, as part of the multidisciplinary team. This will
enable stigmatization to be reduced and maximum time for relationship building with the AYA patient
and their family/whānau.
3. The AYA patient should have access to palliative care clinicians who have sufficient expertise in
assessing symptoms, ensuring appropriate treatment to achieve comfort and enhanced quality of life is
achieved.
4. The AYA patient needs to be provided with opportunities to talk about their cancer with appropriately
skilled health care professionals and know that their values, wishes and beliefs will be upheld.
5. Palliative care services not only provide care for the AYA with cancer but to their whānau, friends and
healthcare professionals involved in their care.
6. Additional consideration and support should also be offered to other AYA cancer patients and whānau
recognising the impact that a death of an AYA may have on them.
7. Where appropriate, the AYA patient should have a documented end of life care plan that they have
developed in partnership with providers of care. “Voicing my choices” is an advanced care plan
developed in consultation with AYA cancer patients and is considered a useful resource for health
providers.60
Resources and education on AYA palliative care and end of life planning for health care professionals
should be provided with a specific focus on communication and the timing of palliative care support.
8. Bereavement support is integral for whānau, peers and AYA support networks. This should be made
available and delivered by appropriately qualified professionals.
24
SURVIVORSHIP
STANDARD 7.1
Following completion of
treatment, all AYA cancer
patients should have a
structured follow up plan that
focuses on the multifaceted
health issues of survivorship.
STANDARD 7.2
All AYA cancer patients
and relevant health care
providers should be provided
with an end of treatment
document
RATIONALE
Numerous health risks exist for the AYA cancer patient following completion of treatment. When compared
to a non-cancer population, AYA cancer survivors have been shown to have a significantly higher
prevalence of cigarette smoking, obesity, cardiovascular disease, hypertension, asthma, and poor mental
health.62 Added to this, neurocognitive impairment, endocrine disorders, gonadal dysfunction and second
malignancy are examples of treatment related complications that require regular follow up.63
The health consequences of treatment are relevant for many years beyond cure. In one large retrospective
cohort study, at 25 years post diagnosis, 66% of adult survivors of child and adolescent cancers (up to 21
years of age at diagnosis) were shown to have at least one chronic health condition, whilst 33% had a
chronic health condition that was classified as severe or life threatening.64
Medical follow up: Various models of survivorship care that provide longitudinal medical follow- up exist, with
the established LEAP (Late Effects Assessment Program) being available to AYA patients who are treated in
paediatric oncology services in New Zealand. Medical follow up should include screening for both general
health conditions and specific late effects of therapy.
The AYA cancer population is treated in a variety of cancer institutions and locations, and such, flexibility
is imperative. A tiered risk based approach to survivorship care allows optimal utilisation of cancer service
resources.65,66,67 Complexity of follow up (hospital, primary care, or a combination of both – the ‘hybrid’
model) can be decided by allocating a risk group to the AYA cancer survivor based on current medical
issues and the level of risk stemming from prior treatment. Bidirectional communication and assistance
with clinical management and provision of surveillance guidelines is recommended.66 The use of a case
manager to coordinate screening investigations, appointments, and to facilitate referrals has been
successfully implemented in survivorship programs.67
Psychosocial Follow up: AYA cancer survivors are at heightened risk of psychological late effects, including
posttraumatic stress, depression and anxiety.48 The fear of recurrence, difficulties with formation and
maintenance of friendships/intimate relationships, forgetfulness and inattention, sexual concerns and
ongoing fertility related distress are all examples of the multiple psychosocial issues that AYA cancer patients
face in survivorship.48,68,69
A major focus of survivorship is the re-entry back to life without cancer - key to this is the recommencement
of work or education. In one study, American AYA cancer survivors were noted to have poorer employment
rates when compared to an age matched non cancer population (24% vs 14%).69 Successful reintegration
has been shown to improve quality of life, reduce social isolation, and increase self-esteem.69
The psychosocial needs of the AYA cancer survivor need to be recognised and addressed at the end of
treatment and at regular intervals thereafter. An AYA’s cancer experience will always be part of them, but
should not become their sole identity. The support provided by services must be finely balanced to avoid
AYA’s becoming dependent on services long term.43
25
End of Treatment Document: Having a formalised end of treatment record or ‘passport’ which can be
accessed by both the survivor and the care provider is intended to facilitate easier transition. Common
topics covered in the end of treatment record include: the long-term effects of cancer and its treatment,
identified psychosocial support resources in the community, guidance on follow-up care, prevention, and
health maintenance.70 Clinicians who use formalized end of treatment care plans have reported improved
conversations with survivors about potential late effects and also improved adherence to surveillance
recommendations.71
GOOD PRACTICE POINTS
Medical Follow up:
1. Late effects surveillance guidelines such as www.survivorshipguidelines.org or those available via
the American Society of Clinical Oncology website www.asco.org should be followed to provide
surveillance guidance for each AYA patient.
2. AYA survivors that are identified as being at high risk of complications e.g. post BMT patients, should
continue to be seen regularly at specialist long term follow up clinics.
3. An agreed contact person within the initial treating cancer team should be available to expedite rereferrals and to answer questions.
4. National collaboration needs to exist between primary care providers and cancer based specialists in
developing a model of care to address long term follow-up that best meets the needs of AYA cancer
survivors in NZ
Psychosocial Follow up:
1. Psychosocial and psychological care should continue post treatment with a focus on the potential
barriers of re-integration such as neurocognitive functioning, social isolation, academic and
interpersonal difficulties, low self-esteem, fatigue management and psychological symptom
emergence.
2. Educational and vocational support focussing on re-integration should be made available as part of
survivorship care. This may include the development of a graduated return to school/study plan which
offers support with future vocational options and assistance with re-establishing peer networks. 3. The development of survivorship programmes which support AYA cancer survivors should be established
and focus on topics such as healthy lifestyle, fatigue management, nutrition, increasing exercise
tolerance, emotional wellbeing, future care and self-management.
4. Access to neurocognitive testing and support should be made accessible to all at risk AYA cancer
survivors.
5. Ongoing involvement of NGO/Community agencies to address survivorship issues such as peer support,
social isolation and financial assistance should continue through survivorship.
6. Oncofertility referrals should either be initiated or repeated following the end of treatment as per the
New Zealand Fertility Preservation guideline.
7. Limitations (regarding age and length of time using services) should be made clear to AYAs when they
begin to utilise services. For example, support groups might have a policy around membership up to
three years post treatment. A gradual process may need to be employed in disengaging AYA from
services.
End of Treatment Document:
1. The end of treatment document should include: Summary of treatment received, late effects
surveillance plan, contact information for treating team and community based psychosocial support,
and information on health prevention and self-management.
2. The document should be updated regularly and be able to travel with the AYA i.e. in email format/USB
or available online.
26
27
2
SECTION
DEVELOPMENTALLY
APPROPRIATE CARE
An AYA’s response to a cancer diagnosis must be understood from a developmental
perspective if they are to be cared for effectively and appropriately.3,4,72 The following
paragraphs outline normal adolescent development and the impact a diagnosis of
cancer can have on both development and management of a cancer.
Adolescence and young adulthood is marked by a period of complex physical,
cognitive and psychosocial change, associated with the transition from childhood to
adulthood. The tasks of adolescence include physical development, the formation
of self-identity, school achievement, decisions about the future, the development
of peer and sexual relationships, and achieving independence and autonomy from
parents.4,26,73 The AYA with cancer is not only susceptible to the pressure associated
with developmental changes, but must also navigate the challenges associated
with their disease and treatment. This can prevent or disrupt the accomplishment of
developmental tasks viewed as essential for transition into healthy adulthood.74,75
Equally the developmental stage of adolescence impacts on cancer and its
management. The available evidence suggests that a substantial proportion of AYAs
with cancer experience challenges with adherence.25,26 Studies suggest that up to
one half of AYAs receiving oral chemotherapy are considered non-adherent.25,26
Developmental priorities such as peer influence can compete with the demands of
health care.76 Even up to the age of 25 years, AYA’s cognitive and emotional capabilities
are still developing. This may result in inconsistent thought processes, difficulties taking
on others views, the inability to reason and weigh things up, preoccupation with the
here and now, impulsivity and difficulty accepting cancer as part of their identity.4,76
All of which may lead to the advice of health providers being rejected.
An inevitable consequence of AYA development is the engagement in experimentation
and risk taking behaviours. Risk taking health related behaviours may include drug
and alcohol use, unsafe sexual practices and engagement in riskier activities. For
AYAs with cancer the consequence of engagement in these behaviours is a lot riskier
to their health than their peers.4
In conclusion, AYA do not respond to management of their cancer in the same way
as children within the context of their family. Nor do they necessarily behave as adults
in assuming personal responsibility for their care. Neither the paediatric nor adult
approach in management of AYAs with cancer is felt to be completely effective.76
Because of the grave consequences of non-adherence in AYA there needs to be
a focus placed on the provision of developmentally appropriate care alongside
best practice medical management. The following standards describe the level of
developmentally appropriate care that AYA’s should have access to.
28
PYSCHOSOCIAL ASSESSMENT
AND CARE
STANDARD 8.1
RATIONALE
Age based comprehensive psychosocial
assessments and screening tools are essential
in the provision of best practice for AYA cancer
All AYA cancer patients will
patients.4,74,77,78,79 Follow-up planning and
have a psychosocial assessment
interventions are more likely to be successful
when based on a good understanding of the
at diagnosis and updated at
young person’s social situation and functioning.72,79
regular intervals to inform their
Ongoing screening and assessment ensures early
identification and intervention of any concerns,
care plan.
including those that contribute to non-adherence
and poor emotional health.
AYAs with cancer often want to know, but are
reluctant to ask about a range of health related
behaviours such as sexual health and substance
use. Evidence suggests that if asked about these behaviours in confidence, AYAs are more likely to
engage with health professionals and feel they can disclose and discuss concerns.4,74,78 This offers the health
professional an opportunity to provide anticipatory advice and preventative care.
GOOD PRACTICE POINTS
1. All AYA cancer patients should have an age appropriate psychosocial assessment such as the
HEEADSSS assessment 77 completed on diagnosis and reviewed at regular intervals throughout their
cancer journey, as individual circumstances will change during the care pathway.
2. Recommended time points for psychosocial assessment include at diagnosis, in the early treatment
period, six months post diagnosis, during significant times in the young person’s life (e.g. relationship
break ups), treatment completion, point of relapse or change in treatment approach, and at points
along the survivorship continuum.
3. In addition to assessment, validated screening tools such as the Australian Youth Cancer Service distress
thermometer 78 may also have a place in identifying AYA issues. If significant distress is identified this
should be followed up immediately with a more comprehensive psychosocial assessment.
4. Following assessment a care plan should be developed by the treating team in partnership with the
AYA. The care plan focuses on addressing the identified needs of the AYA through referral, provision of
information, standard AYA management principles and further assessment. I was too scared to ask my doctor about
weed and chemo... so instead I kept quiet
~AYA Patient
29
RATIONALE
STANDARD 8.2
Low mood is an understandable and
appropriate reaction to a cancer
diagnosis. For many it is a reasonable
All AYA cancer patients will have
coping mechanism in a very difficult
situation. However rates of significant
access to psychology support
depression and anxiety are consistently
from diagnosis.
higher amongst AYAs with cancer in
comparison to either children or adults
diagnosed with cancer 73,80 and with their healthy
peers.79 Rates vary widely in the literature with
prevalence ranging from 16 to 42% of the AYA population diagnosed with cancer.73,80,81 Poor psychological health in AYAs with cancer are associated
with profound psychological suffering, impairments in quality of life, and higher non-adherent behaviours
and risk taking, which in turn contributes to poorer health and social outcomes. 3,25,80,82
It’s not uncommon for AYAs to think about, and question the meaning and purpose of life after a diagnosis
of cancer. This type of thinking may be described as philosophical, existential or spiritual.43 Improving health
provider awareness, communication and screening for psychological and spiritual concerns is imperative to
ensure early access to psychology and wider supportive care services such as chaplaincy, cultural support
and spiritual advisors is achieved.43,73,83
GOOD PRACTICE POINTS
1. AYA cancer patients who have high psychological health risks should have early access to psychology
or psychiatric specialists trained in providing age appropriate therapeutic interventions.
2. Early psychology review can also help differentiate low mood as a result of normal responses to a
cancer diagnosis from early psychological symptoms of disorders such as anxiety or depression.
3. Psychological input needs to be integrated and seen as much a part of the AYA routine care as
medical interventions. Ideally a mental health professional should be part of the treating team,
normalising psychological support, improving access and acceptance to intervention.
4. Ensure clear referral pathways for psychology, psychiatric and counselling services exist for AYA patients. 5. Ensure local support services and resources are known to all staff so they can refer AYA patients on as
needed.
6. The use of secure online video streaming or telephone consultations can assist in delivering AYA
focussed psychological care to isolated patients.
I just could not take any more chemo - it was really
getting me depressed. So after a lot of discussions with
a lot of people, including my keyworker, I stopped.
~AYA Patient
30
31
DEVELOPMENTAL MILESTONES
STANDARD 9.1
All AYA cancer patients receive
support and care to ensure their
normal developmental process
continues throughout their
cancer journey.
RATIONALE
A focus of AYA cancer care is to minimise the
amount of disruption caused by the cancer
experience. The impact of a diagnosis of cancer
on development may include, a return to
dependence on parents, a loss of autonomy,
less peer interaction, body image concerns,
increased social isolation, interruptions and
setbacks in educational and vocational
ambitions and difficulties maintaining romantic
relationships. 3,4,43,73
Helping AYAs to maintain a sense of normality and
to achieve their developmental milestones are vital
to maintaining good self-esteem, effective coping, good
emotional health, adherence and reintegration back to
healthy functioning after treatment. 3,4,25,26,73,84 Ultimately the goal for AYA with cancer is that they not only survive but thrive and are supported
to become self-reliant, resilient, independent and productive members of society.4,85
GOOD PRACTICE POINTS
Access to age appropriate resources and supports need to be incorporated into care beginning at
diagnosis and continuing through treatment, subsequent transitions to off-treatment survival and end of life.
Peer Relationships and Social Support
1. To avoid social isolation AYA patients will be supported and provided with opportunities to maintain
social contact with their usual peer group. This could be done either through direct interaction, or
through the use of social media and or internet/phone.
2. Opportunities are made available for AYA to spend time with other young cancer patients and
participate in extracurricular activities both in the hospital and the community. Examples include ward
based activities, meals out with other patients, guitar lessons
3. Within the treatment schedule, efforts will be made to accommodate attendance at significant events
such as 21st birthday parties, school balls and CanTeen organised camps.
4. Wherever possible, AYAs should have access to a health professional such as a youth worker who
supports them to maintain social links and activities with peers.
32
Education, Training and Work
1. AYA are encouraged and supported to continue education and or/work where possible and
appropriate.
2. School students will be referred to NZ health school who will facilitate educational support for those
patients who cannot continue to attend school.
3. Support will be provided to liaise with tertiary providers regarding special considerations for young
people studying while undergoing treatment.
4. Health professionals should work in partnership with the AYA, where possible to provide flexible
treatment dates, consultation times, and procedures to enable AYAs to continue with their treatment
without disrupting their normal activities (school/work).
5. AYA’s are supported in advocating/negotiating flexible working arrangements with employers.
Behaviour and Risk Taking
1. AYAs should be encouraged to discuss risk taking behaviours with staff
2. AYAs should be consulted and counselled regarding sexuality, sexual practices, intimacy, the risks of
unprotected sex and given advice and support should it be required
3. AYAs should be counselled and receive appropriate information regarding substance use while
undergoing cancer treatment. AYAs who require support are appropriately referred to experts in
smoking cessation or youth substance abuse.
4. Promote and advocate healthy lifestyle choices, whilst remaining supportive and non-judgemental.
Body Image
1. Accurate and relevant information regarding the impact treatment may have on the AYA’s
appearance should be provided. Consider issues such as hair loss, scarring, skin changes, weight
management. The appropriate support and resources need to be facilitated.
2. Where significant surgery is required such as amputation, a visit by a healthy survivor, whom has had a
similar surgery should be offered.
Supporting Independence and Autonomy
1. Access to a social worker/youth worker should be facilitated to ensure AYA have access to a full range
of financial, accommodation, travel and practical support services for which they are eligible for. This
will support their ongoing independence
2. Create an environment where the AYA has some control over their care and treatment such as
scheduling of procedures.
Losing my hair during treatment was pretty hard. It was
part of me and I just felt ugly. I look in the mirror now
and all I see is someone going through hard times.
~AYA Patient
33
CARING FOR WHĀNAU, PARTNERS
AND THE COMMUNITY
STANDARD 10.1
RATIONALE
Many AYA cancer patients are reliant on their
whānau during treatment. It is not uncommon to
see young adults who had previously left home
Whānau, partners and the
return and become dependent on parents for
support network of an AYA
practical, emotional and financial support.73,83
This can cause a significant economic burden,
diagnosed with cancer will have
worry and stress for whānau,4,36,86,87 with some
their practical and emotional
parents reporting higher levels of psychological
distress
than their child undergoing cancer
needs attended to and
treatment.88 Siblings are also at risk of
addressed.
psychological distress, decline in academic
performance, behavioural issues and disconnection
from their peers.89
Parental involvement, social support and whānau
cohesion and functioning are considered some of the
strongest predictors for good adherence.25,26 Thus, there is a need to focus on fostering parental involvement and providing support and
resources to meet the practical and emotional needs of whānau and partners.88,90
The role of a partner and for some, their own children are important. A cancer diagnosis is challenging
even in a robust and longstanding relationship. Younger partners may be left feeling overburdened, or in
contrast, isolated depending on the reaction of an AYA cancer patient.43
The support networks of AYAs extend to peers, teachers, sports teams, and the church community. Often
great concern is shared and these peoples own emotional and information needs should be considered by
the wider team.
I don’t get to spend as much time with my kids as I
used to. My partner is very afraid... He couldn’t quite
handle it and he had to get away from me.
~AYA Patient
34
GOOD PRACTICE POINTS
1. Treatment teams should take into account the practical needs of the wider whānau, partners and
dependents.
a. Provide families/partners with access to information about their rights to government benefits/entitlements and assistance provided from charities and community agencies.
b. Identify specific needs and facilitate support such as transport, accommodation, advocating with employers for flexible working arrangements, respite requirements and support for childcare
2. Resources and supports for parents and carers on the complexities of parenting an AYA with cancer
should be made available
3. Parental and peer support opportunities for carers, parents, siblings, and partners are offered and
referrals completed to NGO support providers
4. School health and wellbeing teams can be good resources for provision of support for school aged
siblings and peers.
5. Treating teams should be alert to any emotional and psychological distress for immediate carers and
refer to support services as appropriate
6. It is essential that though the AYA patient is central to all aspects of their care and decision making,
there is a need to recognise whānau involvement as being equally important. For example ensuring
AYA’s have the support of whānau in the delivery of any progress updates. 7. There may be conflicting views between parents/a partner and the AYA. Staff should help to resolve
conflicts as soon as possible while maintaining a sensitive approach and working relationship.
8. Treatment teams should be sensitive to the need to provide treatment information and updates to the
wider whānau. This may be based in a hospital or community setting.
9. Programmes and resources are made available for peers and community groups for support once an
AYA is diagnosed within their community.
She would sit in on all my important appointments
and then we’d go and talk about them afterwards to
make sure I understood and didn’t miss anything.
We’d then go over what was going to happen next,
where I needed to be and what I needed to do. It was
so good that I could understand
~AYA Patient
35
AYA’S IDENTIFIED AT RISK
OF NON-ADHERENCE
RATIONALE
STANDARD 11.1
AYA’s at risk of nonadherence are identified
and prioritised for intensive
case management.
There are a number of risk factors associated with increased
non-adherence in the AYA cancer population. These
include: family/parental dysfunction, multiple problems of
disadvantage, poor health literacy and engagement, low
self-esteem, psychological distress, parental mental health,
substance abuse, teenage parent and AYA not engaged
in training or work.25,26,88,91
Early identification of those at risk of non-adherence and
early intervention is likely to be most effective in supporting
adherence and preventing abandonment.3,91
GOOD PRACTICE POINT
1. The regional AYA cancer service has a process in place to identify and prioritise AYA and their whānau
at risk of non-adherence and disengagement from care. Identification of risk should mobilise intensive
case management by the AYA keyworker/champion and wider multidisciplinary/multiagency team.
The practice points below describe some key components of intensive case management.
a. Identify proactive ways of reaching and engaging AYA who are reluctant to engage in treatment and services such as home visits or flexibility with appointment times.
b. Prioritise continuity of care for AYA patients at risk of non-adherence. It is important that AYA be seen by the same consultant; primary care nurse and MDT team members. The designated consultant is responsible for updating the AYA and whānau about their disease, any problems that might arise and planned treatment.
c. Where possible the AYA key worker attends all appointments to reinforce messages and monitor progress with plans.
d. Frequent contact and monitoring by phone, email or home visits is maintained.
e. For inpatient admissions, an attempt is made to ensure continuity of care by the nursing team.
f. Recognise the practical difficulties for some AYA and whānau in meeting treatment demands such as accessing transport, medications, accommodation and child care. Endeavour to facilitate access and support where needed.
g. Enlist “Harm minimisation methods” to decrease the burden and risk of treatment such as simplification of frequency of medication administration, supplying medications in a blister pack, providing a mobile phone top up to ensure contact can occur with health providers at all times, and arranging St John membership so transport worries are not a factor when acute access to a hospital is required
h. Assessments and delivery of health care are grounded in a strengths based approach. Avoid defining the AYA as ‘the problem’. The focus should be on supporting and building the capacity of the AYA to resist risk factors and to enhance protective factors. For further information on this please refer to the Youth Development Strategy Aotearoa.92
2. Keep the AYA ‘s primary care team updated and engaged for additional support
3. Collaboration and joint interventions between agencies are essential i.e. NGO’s, work and income,
health, housing and social services. With the AYA’s consent this could extend to their support networks
such as the youth leader from their church or the sports coach.
4. At regular intervals the AYA should be reviewed by the wider multidisciplinary team.
36
SELF-MANAGEMENT
STANDARD 12.1
All AYA cancer patients
are supported to selfmanage their own health
care as they mature.
STANDARD 12.2
All AYA cancer patients and
whānau are provided with
developmentally appropriate
cancer related information.
RATIONALE
Taking on, and taking over self-management of cancer care is an essential task of transitioning into
adolescence and then onto young adulthood. It may result in increased self-confidence, a more successful
transition to adult health care, improved cancer outcomes, and improved quality of life ratings.76,93,94
Acquiring the skills for self-management requires significant support and is a gradual process. Health
providers can play a key role in this. Along with the knowledge of their disease, AYAs need to accept
responsibility and be motivated to take greater part in their care. This includes adhering to medication
and management plans, maintaining ongoing preventative health care and seeking out health care and
information services.74
It has been identified that the AYA cancer patient’s need for age appropriate information is significantly
unmet. In the AYA HOPE study (Adolescent and Young Adult Health Outcomes and Patient Experience),
53% of AYA cancer patients were reported as having high levels of unmet information need.95 AYA do
have a strong want for comprehensive information that will inform decision making, and allow them to
fully understand their treatment.4 Effective methods for delivering information to AYA cancer patients
include face-to-face contact with health care providers and patient educational materials, such as
booklets, pamphlets, brochures and DVDs.4 They need to be produced and presented in a way that is easily
understood, and is ultimately useful to AYA and their whānau.4,74
In comparison to older patients, AYA are more likely to use the internet as an important source of health
information. Reviews of internet content show a paucity of reliable high quality information for AYA cancer
patients. 94,96
37
GOOD PRACTICE POINTS
1. In consultations with AYA patients, health providers should apply youth health literacy techniques i.e.
a. explanation of concepts in a manner that is appropriate to the AYA’s development
information should be prioritised
b. presented in logical simple steps
c. key points reinforced and emphasised
d. assess the young person’s understanding
e. the use of repetition and summarising of information
f. the inclusion and use of visuals, diagrams and practical application where appropriate. 2. All verbal discussions should be reinforced by the provision of relevant written information that is
developed specifically for the AYA age group with appropriate language and content. Digital video
clips might also be considered.
3. Providing AYA cancer patients with prescreened lists of recommended and reliable websites will
help them sift through the information available on the internet and to know that they are accessing
information from reliable, safe and trustworthy sources.
4. AYA and whānau are encouraged to talk through information sourced from the internet with health
providers especially information that may differ from that provided by the health care team.
5. Health providers should remain open to discussions regarding complementary and alternative therapy
discussions with specific sensitivity to cultural and religious backgrounds.
6. The AYA cancer patient should be encouraged to ask questions. Give them time to prepare for
conversations, with the suggestion to write questions down prior to discussions.
7. Repeat opportunities for providing information throughout the cancer journey.
8. To assist AYA in self- management of their care, consultations should focus on skill building tasks. This
could include techniques such as role playing scenarios, practical practice, problem solving and
anticipatory guidance.
9. The use of technology for AYA can enhance engagement and self-management such as texting via a
mobile phones to report symptoms
10. Transition checklists exist which guide and facilitate health professionals in supporting AYA and their
family to transition to more independent self-management. The checklists outline indicators that serve
as a prompt for health professionals to assess and assist the AYA in their self-management.
The specialists were so busy and had their team with
them - all poking at my leg - muttering to each other
and I didn’t feel like I could ask questions. The doctors
were very intimidating.
38
~AYA Patient
39
TRANSITION
STANDARD 13.1
RATIONALE
There is considerable literature available on the
concept of transition of care for paediatric
chronic diseases and disability.74,76,97 Less
All AYA cancer patients will be
literature is available relating to cancer. It is
supported as they transition
thought that many of the principles available
can be applied to the AYA cancer survivor and
across services.
services.
Recent decades have witnessed a dramatic increase in
the number of children/adolescents surviving their cancers
and requiring transfer to adult based care.97 There are three subgroups requiring transition: 1) Adolescent survivors in need
of long term surveillance monitoring 2) Adolescent survivors who have treatment related late effects that
require ongoing management and 3) Adolescents who have a relapsed, secondary or primary malignancy
diagnosed in a paediatric setting.97.98
There is generic evidence that AYA transitioning between paediatric and adult or primary care are at
risk of dissatisfaction with care, disengagement with services and dropping out of care. This may lead to
worse disease outcomes.74,76 There are transition of care models and widely available resources that guide
improved transition support. There is early evidence that development of transition programmes improves
disease outcome, cost effectiveness and self-reported engagement in care.74
Relapse or second malignancy in an older adolescent that is followed up in paediatrics or late effects
monitoring programme can create significant challenges with regards to transition of care. This may call for
creative strategies and closer collaboration between paediatric and adult cancer teams.97
Having the capability to address the various types of transition should be a central goal of any AYA cancer
service.
I am constantly on the phone chasing things up. The
nurses don’t know what each other is doing. I have
better things to do with my life.
~AYA Patient
40
GOOD PRACTICE POINTS
1. A transition policy for AYA is in place identifying patients for whom transition is a relevant issue, with
reference to the three sub-groups mentioned above.
2. An evidence based guideline for transition should exist. This should include discussion about the age of
transfer, rationale for transfer, the way services will work together to deliver care during the transition
period, how information will be communicated and shared between the teams, and the provision of
key contacts for the AYA and family during this period.74
3. Good transition processes include ensuring AYAs and their whānau are well prepared for the transfer.
This can be achieved by:
a. Provide sufficient notice that transition will be occurring to allow them to prepare and orientate themselves
b. Give AYA and whānau the opportunity to visit the new ward / clinic and meet key members of the team
c. Outline differences to care and follow-up procedures for the different services
d. A joint consultation/handover occur between paediatric and adult providers with the young person and whānau. e. Resources are available to assist AYA and whānau with the transition process. i.e. brochures about what to expect next
f. All AYA and whānau have a key contact at all times who can help them navigate services, communicate options and identify and help access support resources throughout this period.
g. The transfer should be a distinct event to discourage the AYA from straddling two systems and potentially receiving conflicting treatment advice 4. Key concepts of transitional care for adolescents who have a relapsed, secondary or primary
malignancy diagnosed in a paediatric setting needing urgent transfer to adult cancer services are
discussed below.97
a. Immediate education of AYA and whānau on the adult health care system
b. Initiate a formal collaborative process such as a face to face meeting of at least the core members of the paediatric and adult cancer team with the AYA and whānau
c. Immediate linking in with specific age appropriate psychosocial resources and supports in the adult environment such as social worker, cultural support, peer support groups
d. The temporary assignment of a “key contact” from the paediatric team to accompany AYA and whānau to initial tests and treatments
e. Continued consultative involvement of the wider paediatric team to assist adult care team on an as needed basis.
41
CONFIDENTIALITY/RIGHTS/RESPECT
AND TRUST
RATIONALE
AYAs are more likely to engage with health providers,
disclose concerns/worries and contribute to
decisions about their care, if trust and rapport
can be established and confidentiality/privacy
assured.77,99,100,101 Utilising effective age appropriate
communication skills and working in partnership
with the AYA contributes to the development of
The rights of the AYA cancer
trust and rapport.4,43,77
patient are respected. A
AYAs must be given the opportunity to
be heard and have their opinions valued.
key focus is to establish
Involvement in decision making and
confidentiality and trust.
confidential access to health care are rights for
all young people regardless of their chronological
age.102 AYA cancer patients by nature of their
age, the seriousness of the consequences of
decisions being made and increasing maturity do
present potentially with a number of legal and ethical
issues.102 For example a 15 year old refusing to consent to
further treatment which goes against the wishes of her parents.
STANDARD 14.1
GOOD PRACTICE POINTS
1. AYA’s rights in health care are visibly displayed/discussed in developmentally appropriate language
that is understandable to the young person, and their whānau
2. Confidentiality including the limits to this should be discussed with every AYA and their whānau. This
should be accompanied by a youth friendly written resource.
3. All AYAs should be provided with the opportunity to at least meet alone for part of their consultation
with their health care provider on a regular basis.
4. AYA should be informed and expected to be involved in all information and decisions regarding their
care including consent/assent to treatment, and refusal of treatment. Resources and processes are in
place to support staff with this.
5. Health professionals are aware of the rights of AYA undergoing cancer treatment including their rights to
involvement in decision making and confidential and private health care. Training is provided to all staff
in this area.
6. Ethical and legal dilemmas will arise in the AYA cancer age group. Processes are in place to support
professionals in how to best approach these situations. The 1998 MOH publication Consent in Child and
Youth Health: Information for Practitioners serves as a good guide.110
7. Health Professionals should be familiar with and utilise developmentally appropriate communication
techniques when working alongside AYA such as:
a. A non-judgmental, respectful and empathic approach
b. Spending good quality time with the AYA patient.
c. Be yourself. Don’t try to be cool.
d. Allow time and space to process information
e. The use of good negotiation skills
f. Be honest when you don’t know the answer
g. Adopt a personal approach, use of humor where appropriate
h. The use of technology for AYA can enhance engagement with professionals and ongoing care such as the use of a mobile phone to engage an AYA in conversation.
42
CARE CO-ORDINATION
RATIONALE
The needs of an AYA cancer patient cannot be met
solely by one service or individual. It is not uncommon
for an AYA to be seen by multiple health professionals/
specialists, members of the multidisciplinary team,
within/across multiple DHBs and in both public and
private sectors. AYA with cancer and their whānau
often report feeling overwhelmed by the number of
people they come in contact with, the information
offered and their ongoing need to navigate systems.
STANDARD 15.1
All AYA cancer patients and
whānau will be provided with
access to a nominated health
care professional that will
co-ordinate their care.
Care co-ordination is essential in optimising outcome in the delivery
of AYA cancer care. Internationally AYA co-ordinator/keyworker roles are
considered to be an integral component of best practice for AYA cancer care co-ordination.52,103 In NZ in
2007, six regional AYA cancer care key workers were established based in the larger treatment centres. The
aim of the keyworker is to provide specialised care co-ordination and oversight for the AYA age group.104
An AYA patient/whānau experience evaluation completed in 2013 found AYAs and whānau that had
access to an AYA key worker reported decidedly more positive experiences than those that did not have
access to a keyworker. Although not subject to formal research, positive outcomes identified as a result
of involvement of a key worker by health providers included; better adherence to treatment, a reduction
in DNAs for outpatient clinic appointments, better psychosocial health and wellbeing of the AYA and
whānau, improved timeliness of access to services, supports and treatments and improved oversight and
continuity.
It is recognised that access to an existing AYA cancer care key worker for care coordination is not always
feasible, such as in regions with higher caseloads or in geographically isolated areas. The key message from
this standard is that AYA cancer patients have a nominated health professional, with some specialised AYA
cancer care knowledge, that can provide care co-ordination as outlined in the practice points below. For
example in a larger centre this role maybe undertaken by a clinical nurse specialist with some training in
AYA cancer care, who links in with the keyworker and wider AYA cancer services team for support. For the
purposes of this standard they will be referred to as AYA cancer champions.
A few times when I wanted to throw the towel in, she
helped me stick to the plan. She doesn’t talk about the
treatment, but reminds you what you are fighting for
which helps
~AYA Patient
43
GOOD PRACTICE POINTS
1. All AYA cancer patients should be referred to the regional AYA cancer service during the diagnostic
period. It is recognised that the pre diagnosis period can be a time of significant distress for AYA and
whānau.
2. The regional AYA cancer service is responsible for ensuring every AYA diagnosed with cancer will have
a nominated and contactable AYA key worker/champion to co-ordinate their care. They will provide
support whilst the AYA patient is undertaking treatment in hospital or the community, and subsequently
after their treatment is finished
3. The keyworker or a nominated AYA champion should have met all newly diagnosed AYA and their
whānau within 7 days of diagnosis.
4. The keyworker/ AYA champion is an appropriately trained and skilled health professional identified to
support the AYA and their family by:
a. Co-ordinating their medical and psychosocial care across the whole system and at all stages of the patient pathway including as they move between care settings.
b. Facilitating delivery of care that is based on evidence for the AYA age group
c. Ensuring the provision of a written care/treatment plan (after undertaking an initial needs assessment of the AYA and their whānau) d. Facilitate and/or provide practical and emotional support to the AYA and their family e. Facilitate and/or co-ordinate the provision of information that is timely, is age appropriate, meets the needs of the family and is understood
f. Liaise, co-ordinate and advocate with the multidisciplinary team
5. The keyworker/champion and contact details must be clearly identified in the patient records.
6. In situations where the nominated key worker/AYA champion is on leave or can no longer fulfil the role,
the responsibility for this role is transferred to another health professional and the AYA and whānau are
informed and aware of this.
7. Levels of support and intervention may vary dramatically between AYA cancer patients and over
the course of their treatment journey. Levels of support required will differ in each individual case.
AYA identified with complex and high needs such as non-adherence should receive intensive case
management by the AYA keyworker or champion.
8. Optimal care coordination is difficult when AYA cancer patients are isolated by geography, receive
care across DHB boundaries or when gaps in local AYA cancer service provision exist. This can be
overcome by:
a. An ongoing handover process is put in place for AYA requiring transfer between tertiary and regional areas/hospitals for ongoing treatment and follow-up care. AYA and family are allocated a nominated keyworker/champion in both centres who ensures good collaboration and facilitates smooth transfers
b. The creation of communication networks between local health care providers and the regional AYA cancer service, enhancing use of local and remote cancer services and youth health providers.
c. The utilisation of web based resources and support for health professionals and AYA/Whānau are made available. Examples may include a portal for AYA cancer specific tools and information or peer support provided online.
9. Caseloads for AYA keyworkers are restricted to a size that enables them to provide quality care.
44
RATIONALE
STANDARD 15.2
Best practice for AYAs with cancer is delivered
through a combination of specialised medical
management and expert age appropriate
All AYA cancer patients will
psychosocial management.43 AYAs should
have access to co-ordinated
have access to a range of multidisciplinary
and multiagency supportive care expertise and
multidisciplinary and multiagency
services.105 The complex range of services that AYA
care.
will require access to will transcend both organisational
and institutional boundaries.43 For multidisciplinary/
agency supportive care to be effective there needs to be
innovative ways of working and overcoming barriers to
joint working to deliver evidence based AYA cancer care.
As summarised in the literature, where multidisciplinary
care co-ordination is achieved mainly through face to face meetings, the benefits include increased
patient satisfaction with care, increased referrals and access to psychosocial care and information,
increased perception by the patient that care is being managed by the team, improved communication
and familiarity with roles within the team, improved transition between paediatric and adult services, more
equitable services, and development of expertise and shared learning between members of the team.43,52
GOOD PRACTICE POINTS
1. Multidisciplinary/multi-agency care for AYA should incorporate access to the following professionals/
services as required: cancer treatment team, psychology/psychiatry, education, palliative care, youth
providers, NGO providers, cultural support, physiotherapy, occupational therapy, social work, dietician,
government agencies, primary care and community health and social teams.
2. Regardless of where a patient resides and is being treated they should have equitable access to these
professionals and services
3. Ensure good communication channels are developed between cancer treatment teams, allied health,
key workers, NGOs and community services/agencies
a. Strong consideration should be had to the establishment of a separate psychosocial MDT in addition to the treatment planning MDTs. This will provide a forum for holistic consideration of each patient which includes both medical and psychosocial background.
4. A directory of local health, youth/social support services and resources for AYA with cancer and family is
made available for providers of care made available.
5. On entrance to the AYA cancer service, patients are informed of the MDT team/multi -agency
approach to care and provided with explicit information around the sharing of information with the
wider team. A process should be in place to seek consent and limitations for this as required for each
AYA.
45
3
SECTION
INSTITUTIONAL SUPPORT
Maximum survival and equitable outcomes require high quality
AYA cancer services. Strong regional clinical leadership,
advocacy and governance that links with the national
strategy for AYA cancer care in NZ is required. A sustainable
and effective AYA cancer service requires strong youth
participation, the development of a trained AYA cancer
work force, developmentally appropriate environments and
effective performance monitoring. The following five standards
explore these key elements in detail.
46
47
GOVERNANCE & CLINICAL
LEADERSHIP
RATIONALE
STANDARD 16.1
There is a governance structure
with identified clinical leadership
that provides direction and
oversight for AYA cancer care.
Internationally, AYA cancer care is beginning to
be recognised as a distinct discipline.3,43,73,106 If
we are to improve the quality of care and
outcomes for AYA with cancer in New
Zealand, then changes to existing models of
care need to be co-ordinated, measurable
and significant. To effect change and
achieve broad sector engagement,
cohesive and visible leadership and
governance is needed, at both the regional
and national level. This must encompass both
paediatric and adult health care professionals
and multiple agencies and organisations.
GOOD PRACTICE POINTS
1. Each AYA cancer service should have :
• a designated health professional or team providing clinical leadership, direction and oversight
for AYA cancer. This needs to include both paediatric and adult services and representation from
smaller treatment centres.
• a clear interagency governance structure that reports on issues related to delivery of care and
outcomes for AYA cancer patients.
• a service delivery strategy that links to the national strategy for AYA cancer care.
• a process to identify how they will go about measuring improved health care delivery and relevant
health outcomes, with reference to the Standards of Care for the AYA group.
• a process to utilise completed feedback and evaluation to help improve service delivery and
outcomes.
Probably 80-90% of these issues could be dealt with
by improving consistency - putting in place effective
processes and structures
~ AYA Advisory Group Member
48
WORK FORCE
DEVELOPMENT
RATIONALE
It is not uncommon for health professionals working
with AYA patients to report a lack of training
and skills to address both the health and
psychosocial needs of this age group.3,43,74
The best standard of care for AYA cancer
patients is provided by health professionals
who have been specifically trained to care
for them. Currently, nursing and medical
undergraduate training programmes do not
include significant amounts of targeted AYA
education.107
STANDARD 17.1
Health care professionals and
the supportive care workforce
who work with AYA cancer
patients are trained to deliver
developmentally appropriate
care.
Therefore, the provision of AYA cancer
education needs to be expanded. Key AYA cancer
learning topics include effective confidential care,
communication, psychosocial assessment, promotion
of AYA’s capacity for self-management and transition to adult
services.3,82,108,109
No formal evaluation has yet been completed on benefits of the existing post graduate AYA cancer
training programmes. However, it has been shown that post graduate youth health training among
clinicians in school health services in NZ is associated with fewer students reporting mental health difficulties
and binge drinking.74 These findings support the value of specialised training in youth health for clinicians
working with AYAs.
It is recognised in the literature that the AYA cancer age group can pose a number of challenges for
health professionals.43,52 To ensure this age group receive quality safe effective care, organisations need
to consider supports being put in place to attend to the needs of their workforce. Health professionals and
supportive care workers need to have access to clinical supervision and support as required. 43
Need to make sure this is a whole service - this is
not just about the key worker role. They can’t do
everything so other staff need to be trained up
~AYA Advisory Group Member
49
GOOD PRACTICE POINTS
1. All health professionals and supportive care workers who care for AYA patients on a regular basis have
access to and complete basic youth health competency training. A number of New Zealand and
international youth health online basic training packages are available.
2. Health professionals in advanced AYA cancer care roles such as key workers, AYA cancer champions
and lead clinicians should have access to and complete advanced AYA cancer care education, such
as a postgraduate AYA cancer course. Funding options should be made available through employer
organisations and NGO scholarships.
3. Information on the range of AYA cancer training programmes and funding assistance possibilities should
be advertised and readily available to interested health care professionals.
4. Within each treatment centre AYA cancer champions should be identified and trained to the
appropriate level.
5. Organisational support should be available to assist professionals working in sole practitioner roles such
as the six AYA key workers in accessing individual clinical supervision and mentoring.
6. Informal and/or formal staff support should be available to all teams working with AYA e.g. debriefing
sessions.
7. Opportunities should be considered and encouraged for any member of the multidisciplinary team
working with the AYA group to attend international AYA conferences.
8. Multidisciplinary fellowship opportunities and cross training of cancer trainees through paediatric and
adult cancer based rotations are suggested strategies to enhance AYA cancer care education and
should be explored.
50
51
YOUTH
PARTICIPATION
STANDARD 18.1
AYA cancer patients are
provided with the opportunity
to actively participate in the
development, implementation
and evaluation of regional
and national AYA cancer care
programmes and services.
RATIONALE
Government and non-government agencies
in New Zealand are increasingly involving
consumers in contributing to policy and
service development. As quoted by the
past Ministry of Youth Development, “by
utilising youth participation principles in the
development of youth services - you are
more likely to ‘get it right the first time’ and
avoid wasting time and money on services,
programmes and resources that young people
don’t want to use”.110
GOOD PRACTICE POINTS
1. Cancer services should familiarise themselves with and apply the guiding principles of The Ministry of
Youth Development “Keepin’ it Real”.110 This is a resource guide published in 2009 for organisations/
agencies on involving young people in their policy development, programmes, services and
organisations.
2. Cancer services should have access to an identified youth advisory group whose role is to participate
in service development and quality improvement in AYA cancer care. This may be achieved
working collaboratively with an advocacy group such as CanTeen. Examples of utilising good youth
participation include:
a. Health information is reviewed by AYAs to check for comprehension, acceptability and utility.
b. AYA consumers are involved in the design of facilities and selection of furniture and equipment.
c. AYA are directly involved in developing and delivering staff training around AYA cancer care issues.
d. AYA are involved in staff recruitment procedures.
She gave me the tools to advocate for myself and I live
like that to this day. She was life changing for me.
~AYA Patient
52
AGE APPROPRIATE
ENVIRONMENTS
STANDARD 19.1
RATIONALE
The AYA cancer patient
It is essential that AYA are treated in
environments that promote developmentally
will be treated in a health
appropriate care, with access to age appropriate
care environment that is
facilities and recreational resources.
Internationally, and particularly in the UK,
developmentally appropriate.
considerable funding and resource has gone into
developing specialised AYA dedicated cancer units.
Evidence has shown that AYA prefer undergoing treatment
in facilities with others of a similar age.43,111,112 Dedicated facilities
are more likely to adequately address the educational, social and
vocational needs of AYA and engage them in their treatment in a more positive manner.111 The co-location
of AYAs in the treatment setting also facilitates the development of expertise in AYA cancer care for
treating teams.86
Where numbers of AYA with cancer in NZ may not warrant a dedicated facility, simple measures such as
co-locating AYAs, providing access to age appropriate recreational resources and providing some flexibility
in the structure of care are essential. This can increase AYA engagement, promote feelings of normality,
reduce the sense of being in a hospital setting, provide enjoyment, assist with apathy and depression,
promote social interaction and encourage AYA to have higher expectations of their treatment period.43,86,113
Being on the adult ward was terrible. I made it very
clear I was going to be staying with my son and they
put him in a six bed room with five females. There
was no where for me to sleep. Eventually they found
a single room for us and gave me a lazy boy to sleep
in. But then they moved us out again. I was in tears
trying to pack up all our stuff. They said I’d have to
sleep on a couch in the corridor.
~AYA Parent
53
GOOD PRACTICE POINTS
1. AYA cancer patients should be admitted to age appropriate facilities or ‘AYA dedicated spaces’ where
available.
2. AYA dedicated facilities should have the following spaces; recreation room, complete with age
appropriate recreational activities, school or study room, kitchen and laundry facilities and interview
room.
3. Where there is no dedicated AYA facility patients should be co-located with other patients of similar
age group. The most appropriate place for an AYA if this cannot be accommodated is a single room.
4. Local guidelines should be developed to prioritise AYA bed placement. This guideline is known to all staff
and acted upon.
5. Age appropriate recreational resources and décor are made available to all AYA cancer patients. This
includes access to a TV, game consoles, music, wireless internet, DVDs, relevant reading material.
6. Recreational therapists/youth workers are available for AYAs. Their roles may include one on one
support, provision of recreational resources; ward based social activities and facilitation of peer support.
There is an acknowledgement that this role and support may often be provided by the NGO support
workers.
7. Staff processes and ward culture support an AYA age appropriate environment
a. Visiting hours encourage ongoing support from whānau and peers unless medically contraindicated
b. Ward routines are flexible e.g. later waking times and flexible meal times
c. All AYAs should be provided with the option of a support person to stay on the ward. This must be balanced with the AYA’s growing need for independence
d. Actively work to minimise and reduce the time in hospital or outpatient facilities where possible, such as supporting late discharge when treatment finishes in the evening or during the night.
e. Food is identified as a significant issue for AYAs during inpatient admissions. Access to food storage, preparation facilities and flexibility in menu choice should be available.
The kids from CanTeen would come and just hang
out with him. They made him laugh - and boy did he
need that! They’d do some really silly teenage things
and the nurses let them - it was great!
~AYA Parent
54
CLINICAL PERFORMANCE &
MONITORING
RATIONALE
STANDARD 20.1
At present there is no reliable and widely
available incidence reporting and data
A nationally agreed AYA cancer
collection for AYAs (12 to 24 years) with cancer
in NZ. This is a common problem experienced
dataset will be collected within
by many other countries, with current data
each DHB.
collection being viewed as inadequate to
support the much needed AYA focused clinical
research.3,46 The NZ Children’s Cancer Registry (NZCCR)
was established in 2000 and collects demographic and
treatment information for all children receiving treatment in
NZ paediatric oncology centres. The registry includes AYA patients who
receive treatment at a children’s cancer treatment centre, but does not include those treated in adult
treatment centres.
The national cancer registry is a population-based register of all primary malignant diseases diagnosed in
New Zealand. The national cancer registry contains limited clinical data on; treatment and management
approaches, recurrences, clinical trial participation, multidisciplinary care, palliative care, late effects and
psychosocial support/outcomes.
The exploration and feasibility of a minimum national data set and/or an AYA cancer electronic database
is a priority and aims to support clinical case management, service planning, clinical performance
monitoring, and research.
GOOD PRACTICE POINTS
1. Regional AYA cancer services have a current system in place that allows them to case manage and
monitor AYA patients.
2. National data collection should include: data on access, timeliness and quality of care, treatment and
management approaches, recurrences, clinical trial participation, multidisciplinary care, palliative care,
late effects and psychosocial support/outcomes.
3. National AYA cancer incidence and survival data should be reported at least every 3-5 years
4. Where data are collected, they are compiled in accordance with the National Cancer Core Data
Definition standards.113
5. All AYA cancer services have an equity-focused quality improvement plan that includes collecting,
analysing and reporting ethnicity data at a minimum. Services collect ethnicity data according to
Ethnicity Data Protocols for the Health and Disability Sector (Ministry of Health 2004).114
55
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