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Survivorship Care Plans DR KATE WEBBER MEDICAL ONCOLOGIST AND RESEARCH FELLOW NSW CANCER SURVIVORS CENTRE, UNSW.

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Presentation on theme: "Survivorship Care Plans DR KATE WEBBER MEDICAL ONCOLOGIST AND RESEARCH FELLOW NSW CANCER SURVIVORS CENTRE, UNSW."— Presentation transcript:

1 Survivorship Care Plans DR KATE WEBBER MEDICAL ONCOLOGIST AND RESEARCH FELLOW NSW CANCER SURVIVORS CENTRE, UNSW

2  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

3  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

4 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

5  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

6 IOM report

7  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?

8 Aftermath of the IOM report

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13 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

14 IOM report – Care Plans… “…have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary”

15 Where is the evidence?

16 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

17 Local unmet needs Webber, Girgis et al, COSA 2012

18 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 National Institute of Clinical Studies, 2003 Yusoff ANZ J Surgery 2003 Nathan Ann Int Med 2010 Oeffinger JAMA 2009 Keating JCO 2007 Grunfeld J Oncology Practice 2010

19 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 follow-up care  Oncologists and GPs are discordant regarding their roles and responsibilities in follow-up care Brennan The Breast 2011 Miedema Can Fam Physician Cheung JCO 2009 Del Giudice JCO 2009

20  In theory, care plans could address a number of these problems  But where is the evidence?

21 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 Brennan A Pac J Clin Oncol 2010

22 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

23 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

24  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

25 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?

26 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”

27 Care Plans in gynaecological cancers  Haven’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

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29 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

30 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?

31 Care Plans in other chronic illnesses Diabetes  Before/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

32 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

33 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

34 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….

35 Thank you


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