Download Eating needs - Supportive Cancer Care Victoria

Supportive Care in Victoria
Cathie Pigott
Project Manager
Supportive Cancer Care Victoria Project
University of Melbourne
Objectives
• Define Supportive Care
• Understand the implications of the VCAP
targets for supportive care
• Describe screening vs assessment
• Discuss the Distress Thermometer (DT)
• Develop confidence to implement DT
• Consider project plan for implementation
of DT
Supportive Care
• Supportive care is an umbrella term
• Includes services for those with cancer,
their family and carers
• Refers to the domains
– physical
– social
– information
– spiritual
– psychological needs
“Providing optimal cancer care Supportive care policy for Victoria” Metropolitan Health and Aged
Care Services Division, Victorian Government Department of Human Services, Melbourne
Create Better Experiences for Cancer
Patients and Carers
1.
2.
3.
4.
4 Strategic Directions in the
Supportive Care Policy
Identifying supportive care needs of
people affected by cancer
Building capacity for optimal supportive
care
Implementing supportive care screening
into routine practice
Addressing supportive care needs –
referral and linkages
VCAP Targets for Supportive Care
• Action area 4: Supporting and empowering
patients and their carers throughout their cancer
journey
– Increasing the number of patients assessed and treated by
specialist multidisciplinary teams
– Increasing consumer participation in the development of
cancer care policies as well as in cancer service delivery
and research
– Establishing a new state-wide service for adolescents and
young adults, and a program to manage the long-term
effects of treatment for survivors of childhood cancer
– Expanding palliative care services to give patients and
carers real choice about end-of-life care.
A Model of Supportive Care
Adapted from M Fitch 2000
People affected by cancer
Not all patients have the same level of need
People will vary with respect to their:
• Responses to the demands of having
cancer
• Capacity to articulate their supportive care
needs
• Ability to self manage the demands of
having cancer
• Desire to access services to meet
supportive care needs
VCAP Screening Target
• We will document supportive care
screening for 50 % of newly
diagnosed cancer patients by 2012
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Evidence based strategies to respond to
identified needs
Do we know how to respond to all unmet
needs in ways that influence outcomes?
Is best evidence being used in practice?
Does unmet need data drive our service
development?
Does population data on unmet needs help
us to:
Define the workforce training needs
Refine a research agenda in supportive care
Opportunities
To develop an evidence based state-wide
approach to professional development for
provision of supportive care services
VCAP target: by 2012 we will provide evidence
of training of the cancer workforce in
supportive care screening processes and
survivorship awareness
Workforce approaches that make
best use of human resources
In the context of workforce shortages and
a growing cancer burden:
 What skill mix is needed?
 Who needs what competencies in supportive
care?
 What models of interdisciplinary teamwork
best fit cancer?
 All – involved in
supportive care
screening, provide an
immediate response and
make referrals
 Many – provide cancer
specific supportive care
assessment and support
as part of the MDT
 Some – provide cancer
supportive care
interventions
 Few – provide specialist
cancer supportive care
interventions.
Feedback
What is it like to have cancer?
Divide into three groups:
All groups:
Having cancer is like………..
Group 1: What are the major issues faced by patients with
cancer?
Group 2: What factors are associated with an increased
risk of supportive care issues? i.e. who is most at risk?
Group 3: What are the factors/barriers that influence the
provision of supportive care?
What are the major issues faced by the
patient with cancer?
• Emotional and
social issues:
– Emotional
responses
– Psychological
vulnerability/
emotional and
social support
• Psychological issues:
– Self concept, body image,
sexuality
– Interpersonal problems
– New relationships post
diagnosis
– Stress and adjustment
reactions
– Severe emotional distress
– Anxiety
– Depression
– Suicide
– Post traumatic stress disorder
What are the major issues faced by the
patient with cancer?
• Physical issues:
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–
–
–
–
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Treatment side effects
Pain
Fatigue
Fertility issues
Disfigurement
Odour
–
–
–
–
–
–
–
Incontinence
Bowel problems
Cognitive problems
Nutritional issues
Weight changes
Respiratory symptoms
General health
condition
What are the major issues faced by the
patient with cancer?
• Practical and financial issues
–
–
–
–
Costs
Travel and accommodation
Loss of income
Difficulties with business dealings
• Spiritual issues
–
–
–
–
Making meaning
Experience of hopelessness / helplessness
Guilt
Fear
• Impact on family/caregivers
What are the major issues faced by the
patient with cancer?
• Survival issues
• Issues requiring special consideration
– Culture
– Age
– Geography
– Sexual orientation
Factors associated with increased risk
Characteristics of the individual
• Younger patients (<30) who may be particularly
vulnerable to emotional distress
• Older patients who may face difficulties associated
with co-morbid conditions such as heart disease,
arthritis or waning mental capacity
• Patients who are already the carer of someone else
• From a culturally and linguistically diverse
background
• Single, separated, divorced, widowed, living alone
(NHMRC, 2003)
Factors associated with increased risk
Characteristics of the individual
•
•
•
•
•
•
Facing economic adversity
Perceived poor social support
Poor marital or family functioning
History of psychiatric problems
Cumulative stressful life events
Past history of alcohol or other substance
misuse
• If the person has children <21 years
• Living in a rural area
(NHMRC, 2003)
Factors associated with increased risk
Characteristics/stages of the disease or treatment
At the time of diagnosis and recurrence
• During advanced stage of the disease
• At the end of treatment
• More treatment side effects, functional
impairment
• Experiencing chronic pain or fatigue
• More complex treatment regimes
(NHMRC, 2003)
Factors/barriers that influence the provision
of supportive care
Non identification of supportive care needs may be due to the
reluctance by patients to initiate discussion about their supportive
care needs and health clinicians failing to ask
•
•
•
•
•
•
Knowledge
Beliefs and attitudes
Values
Self efficacy
Time
Assessment skills and
systems
• Interview skills
• Reminders
• Resources
• Role definition
• Support systems for
health professionals
• Feedback
• Rewards
• Negative consequences
Screening versus Assessment
Screening is not the same as
assessment
Screening should be:
Low cost and complexity
Easy to administer
Available to all
Sensitive to identification of needs
Screening Tools
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Many tools are available but many
have been designed for research
purposes
There is ‘no one best tool’
A tool specifically created for the
screening of cancer patients within a
clinical context is the Distress
Thermometer (DT)
Screening
Screening
Regardless of the tool used, screening must
ALWAYS be accompanied by a discussion
with the patient about their needs to:
 Clarify patient answers on the tool and eliminate
any misunderstandings
 Prioritization of issues for those with many
 Check that patients with no identified needs do
not have additional/unreported issues
 Discussion of appropriate referrals and patient
readiness to accept referrals
Screening
Should take into account both disease and
demographic risk factors
 Disease related issues
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
Tumours with poor prognosis
Stage of illness
Demographic issues
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Younger patients
Lower income
Level of social support
Psychiatric history
The Distress Thermometer
• Developed by the NCCN
• Identifies patient distress (score ≥4
significant) and a range of supportive care
needs
• Use regulated – requires permission for use
and for any adaption
• Validated
• Widely used
• http://www.nccn.org/professionals/physician_gls/f_guideline
s.asp
Domains Covered
Domain/Topic
DT
Distress/Emotional

Practical

Family

Spiritual

Physical

Information

Communication & Understanding

Drug/alcohol use

ADL

Family history cancer

Current service use

Identification of risk factors
Disease factors
Demographic factors
• Younger age (X)
• Gender (X)
• Single, separated, divorced,
widowed or living alone (X)
• Caring for children or dependent
adults (DT)
• Economic adversity (DT)
• Poor social support (X)
• Poor marital/family functioning (DT)
• Past psychiatric treatment (X)
• History alcohol/substance abuse (X)
• Cumulative stressful life events (X)
• Living in a rural area (X)
•
•
•
•
•
•
•
•
Advanced disease (X)
Poorer prognosis (X)
More treatment side-effects
(DT)
Greater functional impairment
(DT)
Greater disease burden (X)
Lymphoedema (DT)
Chronic pain (DT)
Fatigue (DT)
Identify your local referral pathways
Compile a list of available supportive care
services
May be cancer specific or generalist
Internal resources
External resources (eg community health
centres)
External resources compiled by
Victorian Cancer Council Helpline
Service Directory
How do I know when I should offer a
referral?
Be guided by current evidence-based
referral protocols
Adapt protocols to suit local needs (ie
consult with local clinicians)
Be guided by not only the patients need –
but by what they are ready to accept
Prioritize
Identified
Service
Referral Reasons
Referral
Form
Required*
Clinical
Psychology/
Psychiatry
Lowered mood/tearfulness/social
withdrawal
Irritability/anger
Worry/panic/distress
Cognitive concerns (e.g. memory
difficulties or competence)
No
Dietitian
MST Score of 2 or more
Yes
Familial
Cancer
Centre (FCC)
CRC less than 50 years of age or
CRC any age plus FH CRC/Gynae
Cancer
BrCa less than 40 years of age or
any age plus FH OvCa/multiple BrCa
BrCa or OvCa plus ‘at-risk’ ancestry
Clustering of other cancers
No
Occupational
Therapy
ADL assessment
Home management assessment
Fatigue management
Relaxation/stress management
Comfort/pressure care management
Yes
Contact
Details
Identified Service
Referral Reasons
Referral
Form
On
Track@PeterMac
Patient aged between 15-25
Yes
Pain and
Palliative Care
Complex symptom management
Palliative goal of treatment
Advanced cancer where death within
12 months is not unexpected
Psychosocial needs of patients and
carers in the context of above point
Identified bereavement risks
Yes
Pastoral care
Meditation
Support in relation to spiritual health
and wellbeing
No
Physiotherapy
Mobility assessment/falls risk
Chest physiotherapy
Fatigue
Exercise program/musculoskeletal
Lymphoedema
Yes
Contact
Details
Future directions
Re-screening
Abbreviated screening tool
Times/criteria for rescreening
May differ between tumour
streams
Case Studies
Meet Jane, a 36 year old female;
Newly diagnosed Stage III Ovarian Cancer;
Jane is married with two young boys.
And think about some of the issues that may come up in a
discussion following her completion of the supportive care
needs screening tool.
http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/ovarian_cancer/find_the
_condition_early/meet_jane.xml
Patient discussion points
• Low - Moderate distress score however number
of issues identified
• Feeling fatigued
– What is the impact on the person and family life - Is it
limiting activities of daily living
– How long has it been going on
– Has it become more severe lately
– What supports / strategies are being used or may be
available
– Have these strategies worked
• Sleep
– Does she have difficulty in falling asleep?
– Does she wake up early and have problems getting
back to sleep?
Patient discussion points
• Eating needs
– What is happening
– Is it a new problem
– Is it related to the
treatment
– Has she noticed any
weight loss
– How long has it been
going for
– What strategies has she
tried
• Constipation needs
– What is happening
– Is it a new problem
– How has she managed up
till now
Concentration
– Can she give you an example of
how it is a problem
– Are her thoughts muddled?
– Does she feel mentally hazy?
– Did she notice whether the
problem may be related to a
recent change or event such
as
starting on a new treatment
– May need a mini-mental or
referral on to the doctor for
review
Patient discussion points
• Fear, nervousness, sadness and worry, and the
ability to have children
– how has the diagnosis affected her life and future plans
– Are her fears about the disease, treatments, caring for
family, self-image, appearance, intimate relationships,
prognosis or other things?
– What worries her the most?
– How has this impacted
– What supports / methods has she used in the past and
found helpful to cope with stress
– If unsure ask her to tell you about a problem she had in
the past and how she managed it.
– What supports does she have already
– Is there someone that she can talk to about her feelings
or concerns?
Patient discussion points
• Work issues
– Identify what the financial concerns are at this time?
– Has there been a change in her income since she
became ill?
– Is she the sole/primary bread winner in her family or a
two income family
– Is she on a fixed income?
– Is there anyone available to help with banking and
bills?
– Is this help consistent and reliable
• Risk factors
– Young, female, stage III (advanced disease),
dependent children, fatigue and death of mother
(cumulative stress)
• Other concerns
– Genetic concerns
• Information
Patient referrals
Dietitian
– Cancer Council
– Lack of appetite
information
– Constipation
– Cancer Council Helpline
– Fatigue
131120
• Social Worker:
– Further psychosocial
assessment
– Infertility
– Care of children
– Possible financial impact
– Work issues
Patient referrals
Possible referrals:
• Physiotherapy / Occupational Therapy
– Fatigue
• Genetic counsellor
– Discussion of concerns re. genetic inheritance
Case Study 2
• Meet Harold, a 75 year old male with lung
cancer and has just commenced
treatment, chemo and radiotherapy
• Harold lives with his son and their dog on
a farm
•
http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/lung_cancer/duri
ng_active_treatment/meet_harold.xml
Patient discussion points
• Low distress score – what does this mean?
• Feeling fatigued
– What is the impact on Harold and his ability to go home - Is it
limiting activities of daily living
– How long has it been going on
– Has it become more severe lately
– What support / strategies are being used or are available
– Have these strategies worked
• Sleep
– Does he have difficulty in falling asleep?
– Does he wake up early and have problems getting back to sleep?
Patient discussion points
• Eating needs
– What is happening
– Is it a new problem
– Is it related to the treatment
– Has he noticed any weight loss
– How long has it been going for
– What strategies has he tried
• Breathlessness
– When is he short of breath
– Is it a new symptom
– What if anything helps relieve the shortness of
breath
Patient discussion points
• Pain
– Describe the pain
•
•
•
•
•
•
Where is the pain
Is it a new pain
How severe is the pain
Does the pain move anywhere else
What if anything helps the pain
Is the pain uncontrolled
• Transportation / Housing
– How might this impact on Harold’s willingness to
complete treatment
– What is the financial impact of treatment away from
home
Patient discussion points
• Fears and Worry
– how has the diagnosis affected his life and future plans.
– Are his fears about the disease, treatments, caring for
family, self-image, appearance, intimate relationships,
prognosis or other things?
– What worries him the most?
– Does he feel angry or guilty about having lung cancer?
– How does he express those feelings?
– How has this impacted
– What supports / methods has he used in the past and
found helpful to cope with stress
– If unsure ask him to tell you about a problem he had in the
past and how he managed it.
– What supports does he have already
– Is there someone that he can talk to about his feelings or
concerns?
Possible Referrals
• Information
– Cancer Council information
– Cancer Council Helpline 131120
• Social Worker/ Psychology:
– Further psychosocial assessment
• Social Work
– Possible financial impact
– Transport / housing issues
• Dietitian
– Lack of appetite
– Fatigue
Possible Referrals
• Physiotherapy / Occupational Therapy
– Breathlessness
– Fatigue
– Pain
Implementing supportive care
screening in your workplace
Implementing supportive care screening
•
Divided into 5 stages
1. Assessing current practice/identifying need for
change
2. Identifying and involving key stakeholders
3. Planning for implementation
4. Implementing and evaluating change
5. Sustaining change
1. Assessing current practice
• Can be determined by staff interviews
a) Is screening being undertaken
b) Who is responsible for screening
c) What tool is being used – what are benefits
and drawbacks
1. Assessing current practice
d) How is screening documented
e) Are there evidence-based referral protocols?
f) What proportion patients are screened? Who
is missed?
2. Identify and involve key stakeholders
a) Identify the main stakeholders
b) Form a steering committee or tap into an
existing committee
c) Gain organizational support
3. Plan for the implementation
a) Identify current staff champions
b) Document available supportive care
services
d) Decide on the tool/gain permission to use
e) Identify committee/persons to approve use
of tool and inclusion in medical record
3. Plan for the implementation
f) Determine which practitioners will screen
and when
g) How will tool be incorporated in to MR?
h) Identify process for making/documenting
referrals
i)
How will clinicians access data
j)
How will tools be available /ordered
3. Plan for the implementation
k) Support needs of screening staff
l)
Consider type of training and develop
package
m) Who will need training;
n) When are they available and;
o) How long do you have?
3. Plan for the implementation
• Other training issues
–
–
–
–
Who will undertake training
Who will coordinate
Who will assess success and how
Future process in place for training/assessment
4. Implementing and evaluating change
a) Publicize implementation
b) Staff consultation to trouble shoot
c) Assessing proportion patients screened
d) Assess who is not being screened/barriers
5. Sustain the change
a) include screening in KPIs
b) Implement train-the-trainer program
c) Establish QA criteria
d) Establish committee to oversee QA
e) Rewards for those groups exceeding criteria