Download Health Outcomes in Cancer Survivors

Survivorship Care Plans
DR KATE WEBBER
MEDICAL ONCOLOGIST AND RESEARCH FELLOW
NSW CANCER SURVIVORS CENTRE, UNSW
Background
 1 in 2 men and 1 in 3
women will be diagnosed
with cancer by age 85
 Almost 2/3 of adults and
over 3/4 of children with
cancer can expect to live 5
years or more
 Survivors are a large and
growing population
Cancer Institute NSW, 2008
Issues facing survivors
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As a whole, survivors have inferior
health to the general population
They experience a range of
physical, psychosocial and
practical challenges after
treatment
Risk of recurrence
Risk of second malignancies
Late toxicity of cancer treatment
Uncertainty/psychological issues post
treatment
◦ Preventative medicine and lifestyle
issues
◦ Psychosocial and practical difficulties
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Late effects of cancer treatment
Post-cancer fatigue
Cognitive impairment
(“chemobrain”)
Cardiac toxicity
Pulmonary toxicity
Metabolic syndrome
Neurotoxicity
Anxiety and mood disorders
Premature menopause
Infertility
Sexual dysfunction
Bone health
Traditional approach to
follow-up
 Oncologist led
 Seen in busy clinics, alongside patients on treatment and
having palliative care
 Focus on cancer recurrence and screening for new cancers
 Non-cancer issues are often not adequately addressed
 Fragmented with little co-ordination between multiple providers
◦ duplications and omissions in care
 GP involvement variable, often non-existent
 In 2005 the US IOM published a
seminal report addressing the
challenges of delivering
survivorship care
 Described conventional followup as “haphazard, unplanned
and inadequate”
 Proposed 10 key
recommendations for quality
survivorship care
IOM report
What is a Survivorship Care
Plan?
 IOM report – 2 page table
Key features of Survivorship Care Plan
 2 key parts
Treatment details
- Nature of operation
- Radiotherapy sites and doses
- Chemo regimen, drugs and doses
listing 18 components
◦ Diagnosis and treatment
summary
◦ Plan for managing current
and future health issues
Diagnosis details
- site, stage, histology, receptors, markers
Expected short and long term toxicity
Cancer follow-up schedule
 Patient held
 Available to providers
identified as involved in
their care
Screening for late effects, second cancers
Preventative health and lifestyle
recommendations
Psychosocial concerns
Practical issues
Designation of clinician responsibilities
Aftermath of the
IOM report
Current state of play
 Growing presence in follow-up guidelines
 Uptake has been variable both in Australia and overseas
 Major obstacles
◦ time and effort required for preparation and delivery
◦ uncertain benefits
◦ physician perception that they already do survivorship care
 Will become a cancer centre accreditation issue in the USA from
2015
IOM report – Care Plans…
“…have strong face validity and can
reasonably be assumed to improve care
unless and until evidence accumulates
to the contrary”
Where is the
evidence?
Survivors have unmet needs
 Multiple self-report studies demonstrate high levels of unmet needs
with current models of care
 Among over 1000 cancer survivors, the majority had unmet needs
for:
◦ information about tests and treatments (70.8%)
◦ health promotion (67.8%)
◦ side effects and symptoms (63.3%)
◦ interpersonal and emotional issues (54.4%)
Beckjord, J Cancer Survivorship 2008
Hodgkinson Support Care Cancer 2006
Local unmet needs
“I didn’t receive any help” or
“I had some help but not enough”
Information about late-effects
Managing fatigue
Genetic risk to family
Reassurance
Diet
General health
Pain and symptoms
Genetic counselling
Psychological support
Information about check-ups
0
10
20
30
% reporting unmet need
40
50
Webber, Girgis et al, COSA 2012
Failure to adhere to
recommended follow-up
 Many survivors have more follow-up tests than recommended
◦ colonoscopy after colorectal cancer
◦ routine tumour markers, chest x-rays or bone scans in
asymptomatic breast cancer survivors
 Other survivors do not receive recommended screening at all
◦ Mammograms in older and rural breast cancer survivors, and
women who have had mastectomies
◦ Breast and colon cancer screening in high risk childhood cancer
survivors
Keating JCO 2007
Grunfeld J Oncology Practice 2010
Nathan Ann Int Med 2010
Oeffinger JAMA 2009
National Institute of Clinical Studies, 2003
Yusoff ANZ J Surgery 2003
Providers responsible
 Many survivors report concerns about poor communication
between their care providers
 >1/3 do not know which clinician is in charge of their followup care
 Oncologists and GPs are discordant regarding their roles and
responsibilities in follow-up care
Cheung JCO 2009
Del Giudice JCO 2009
Brennan The Breast 2011
Miedema Can Fam Physician. 2003
 In theory, care plans could address a number of these
problems
 But where is the evidence?
Patients and GPs like them
 Australian data from survivors and GPs:
◦ Survivors:
◦ 80% would have found a written summary of their diagnosis useful
◦ 72% wanted information regarding their treatment
◦ 89% information regarding potential late effects of treatment
◦ GPs
◦ All regarded a summary of diagnosis and treatment as important
◦ 57% wanted information regarding potential late effects
◦ 57% wanted written information relating to lifestyle recommendations
◦ 79% felt psychosocial aspects should be included
 Australian survey of medical oncologists, radiation oncologists and breast
surgeons
◦ majority felt survivorship care plans could improve breast cancer care
◦ would use a pro forma if one were available
Baravelli J Cancer Surviv. 2009
Brennan A Pac J Clin Oncol 2010
Do Survivorship Care Plans
do anything?
 High risk childhood Hodgkin’s lymphoma survivors
 Non-randomised, single-arm study
 72 high risk individuals from the CCSS who had not had recommended
screening in past 2 years mailed a one-page Survivorship Care Plan
 almost all reported reading the care plan and understanding its content
 91% reported favourable reactions to the Care Plan
 no associated increases in self-reported anxiety
 Increased uptake of recommended screening for breast cancer and late
cardiac toxicity (41% and 20% respectively)
Oeffinger. Pediatr Blood Cancer. 2011
Survivor knowledge
 Breast and colon cancer survivors, median of 7.9 years from
diagnosis
 Single centre, non-randomised study
 Participants in a study of survivors’ knowledge could opt in to
receive a mailed diagnosis and treatment summary on
completion
 Followed-up 2 years later and knowledge reviewed
 Significantly improved knowledge about
◦ stage of disease (breast 63.0%  75.4%, colon 36.2%  46.1%)
◦ hormone receptor status (43.3%  51.7%)
◦ drugs received (eg doxorubicin 44.2%  68.8%)
Nissen J Cancer Survivorship 2013
 408 women who had completed breast cancer therapy
 Randomised to discharge to primary care following a “standard
discharge visit”, with or without a Survivorship Care Plan
 Primary endpoint: cancer related distress
Grunfeld RCT
 Negative study
◦ cancer related distress
◦ no change in other self-reported quality of life outcomes
 BUT
◦ Median 35 months from diagnosis (range 3-375mo – ie 31 years!!)
◦ Did not report on clinically important outcomes such as adherence
to recommended follow-up, lifestyle behaviours, recurrence and
survival.
◦ What is a “standard discharge visit” ? Is this an intervention in
itself?
Accompanying editorial
“Although we should apply the lessons of this
negative study to improve our implementation
and evaluation of SCPs, we believe it is
premature to dismiss this intervention for
some yet-to-be-determined plan B”
Care Plans in
gynaecological cancers
 Haven’t been widely endorsed to date
 Patient population with a high incidence of survivorship issues
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Hereditary cancer
Premature menopause, fertility, sexuality
Neurotoxicity
Psychosocial and relationship issues
Physical activity and weight management
Smoking cessation
 Unique complexities to follow-up care
◦ Eg approach to CA125 monitoring, natural history of disease
Gynae Care Plan RCT
 121 women up to 1 year post treatment from a single centre
 Randomised by physician
◦ 3 provided and discussed a SCP, 3 did not
 Survivors were not advised of the intervention, but given
opportunity to complete a “health service evaluation” of the
practice after their visit
 More SCP patients reported receiving educational materials
 No difference in rating of service or perceived quality of care
Challenges
 Few studies to date, with methodological issues
◦ Study populations, selection bias, interventions, endpoints
 Multiple key questions not addressed
◦ who should do prepare SCPs
◦ timing of delivery
◦ impact of care plan vs discussion/education that accompanies it
 How to do the studies when care plans “make sense” and
guidelines already demand them?
Care Plans in other chronic
illnesses
Diabetes
 Before/after audit of GP
practices in SW Sydney
 Care plans associated with
improvements in :
─ adherence to guidelinerecommended care (weight,
microalbumin and foot
checks)
─ HBA1C
─ BP
─ cholesterol
Zwar, Aust Fam Physician 2007
Asthma
 Meta-analysis of randomised
trials
 Care plans associated with
◦ improvements in peak
expiratory flow
◦ reductions in emergency
department visits
◦ reductions in hospital
admissions
Gibson, Cochrane rev 2002
Antenatal care
 RCT of 1765 women with low
risk pregnancies
 with an antenatal care plan,
GPs and midwives can safely
care for them
◦ without an excess of pregnancy
related complications
◦ with fewer routine visits,
admissions or non-attendances
◦ with improved continuity of care
Tucker, BMJ 1996
Where to from here?
 Evidence regarding care plans will emerge in next few years
◦ Need to do the right studies
◦ Learn from experience in other chronic diseases
 Ultimately, whether or not care plans are useful is really a
secondary issue
 The key is recognition that survivorship care requires a systematic
and holistic approach to addressing issues beyond cancer
recurrence
 How best to do this remains to be seen….
Thank you