Survivorship Care Plans
DR KATE WEBBER
M E D ICA L O N CO LO G IST A N D R E SE A RCH F E L LO W
N SW CA N CE R SU RV IVO R S CE N T R E , U N S W
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
Background
Cancer Institute NSW, 2008
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
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
Issues facing survivors
Traditional approach to follow-upOncologist 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 follow-up as “haphazard, unplanned and inadequate”
Proposed 10 key recommendations for quality survivorship care
IOM report
IOM report – 2 page table listing 18 components
2 key parts◦ Diagnosis and treatment
summary◦ Plan for managing current
and future health issues
Patient held
Available to providers identified as involved in their care
Key features of Survivorship Care Plan
Diagnosis details - site, stage, histology, receptors,
markers
Treatment details- Nature of operation- Radiotherapy sites and doses- Chemo regimen, drugs and doses
Expected short and long term toxicity
Cancer follow-up schedule
Screening for late effects, second cancers
Preventative health and lifestyle recommendations
Psychosocial concerns
Practical issues
Designation of clinician responsibilities
What is a Survivorship Care Plan?
Aftermath of the IOM report
Current state of playGrowing 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 needsMultiple 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 2008Hodgkinson Support Care Cancer 2006
Local unmet needs
Information about check-upsPsychological support
Genetic counsellingPain and symptoms
General healthDiet
ReassuranceGenetic risk to family
Managing fatigueInformation about late-effects
0 10 20 30 40 50
“I didn’t receive any help” or “I had some help but not enough”
% reporting unmet need
Webber, Girgis et al, COSA 2012
Failure to adhere to recommended follow-upMany 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
National Institute of Clinical Studies, 2003Yusoff ANZ J Surgery 2003
Nathan Ann Int Med 2010Oeffinger JAMA 2009
Keating JCO 2007Grunfeld J Oncology Practice 2010
Providers responsibleMany survivors report concerns about poor
communication between their care providers
>1/3 do not know which clinician is in charge of their follow-up care
Oncologists and GPs are discordant regarding their roles and responsibilities in follow-up care
Brennan The Breast 2011Miedema Can Fam Physician. 2003
Cheung JCO 2009Del Giudice JCO 2009
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. 2009Brennan 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 knowledgeBreast 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 cancersHaven’t been widely endorsed to date
Patient population with a high incidence of survivorship issues ◦ 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 RCT121 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
ChallengesFew 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 illnessesDiabetesBefore/after audit of GP practices in SW Sydney
Care plans associated with improvements in :─ adherence to guideline-
recommended 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 careRCT 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