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