cancer survivorship care: global perspectives and opportunities for nurse-led care

Cancer Survivorship Care: Global Perspectives and Opportunities for

Nurse-Led Care

Carrie Tompkins Stricker, PhD, CRNP, AOCN® Oncology Nurse Practitioner

Abramson Cancer Center, University of Pennsylvania

Chief Clinical Officer,On Q Health, Inc.

Objectives• To define cancer survivorship &

describe survivorship care as a distinct phase of the cancer care trajectory

• To provide an overview of cancer survivorship care plans– Goals, challenges, models, & care plans

• To identify and expand vision for nursing roles in cancer survivorship care

Data source: Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR, Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008.    -Also: -Also: http://seer.cancer.gov/csr/1975_2008/, http://seer.cancer.gov/csr/1975_2008/,

Estimated Number of Cancer Survivors in the United States From 1971 to present

*14.5 million**14.5 million*

as of 1/1/15as of 1/1/15

True in Australia as well

• 1 in 2 men will be diagnosed with cancer before their 85th birthday; 1 in 3 women

• Cancer diagnoses expected to rise to 150,000 (from ~120,000) by 2020

• Survivorship– 2/3 of people diagnosed with cancer are

likely to survive 5 years or more– In 2007, there were 774,674 people in

Australia living with a previous cancer diagnosis

Cancer survivorship worldwide• Nearly 28.7 million cancer survivors

globally• in 184 countries• within five years of diagnosis (2008)

• Most prevalent cancer– Breast cancer (> 5 million)

• Most prevalent among women in 145 countries

– Prostate cancer (> 3 million) • Most prevalent among men in 111 countries.

– Colon and rectum (> 3 million)

http://www.iarc.fr/en/media-centre/iarcnews/2011/globocan2008-prev.php

Cancer survivor, vs. cancer survivorship care

• Cancer survivor (NCCS definition)– Anyone diagnosed with cancer, from the

time of diagnosis and for the balance of life

Cancer Survivorship Care

Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in

Transition. The National Academies Press: Washington, D.C.

Why the unique emphasis on cancer survivorship

care?

Well, finally! I thought this thing would never end!!!

Background• Cancer survivors have unique needs

– Less contact with oncology team during the survivorship period

– Complex medical and non-medical issues• Symptoms, psychosocial issues, function,

recovery, long term and late effects

– Many needs remain unmet in current health care system

– Coordination of care for cancer survivors remains problematic

- Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217 - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost inTransition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.

Symptom Burden and QOL in Survivors

• ~1/3 of survivors experience symptoms after treatment equivalent to during treatment

• Most common:– Fatigue– Depression or mood disturbance– Sleep disruption– Pain– Cognitive limitations

» Wu & Harden, Cancer Nurs 5/14/14 epub ahead of print

Supportive Care Needs of Survivors Inadequately Addressed

•n = 3,129 diverse cancer survivors

Cancer survivorship: What are other issues?

• Care for cancer survivors – is often not standardized or

systematized – is not personalized– is poorly coordinated

• Both under- and over-utilization of services is common

– is highly variable in quality

- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost inTransition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.

Underuse of necessary cancer-related care

• Cancer surveillance– 38% of older breast cancer survivors do

not receive annual mammography

• Late effects surveillance• Only 14% to 26% of prostate cancer

survivors at risk for osteoporosis are screened/treated

• 80% of Hodgkin’s Disease survivors s/p mantle radiotherapy don’t undergo recommended echocardiograms

1. Salloum et al., 2012; 2. Schapira et al., 2000; 3.Tanvetyanon T. Cancer. 2005;103:237-241. 4. Yee EF, et al. J Gen Intern Med. 2007;22:1305-1310. Oeffinger, K.C., et al., Pediatric Blood & • Cancer, 2010. 56(5): p. 818-824.

Under Use of Necessary Chronic Care in Cancer Survivors

N=14,884 colorectal cancer survivors vs. matched controls•Cancer survivors more likely to not receive recommended chronic care (OR 1.19, 95% CI, 1.12-1.27).

– E.g., follow-up care for CHF, diabetes, & recommended preventive services.

•Elderly, poor, & minorities esp. at risk

Earle & Neville, 2004

Over-use of unnecessary care

Implications of Variations in & Poor Coordination of Care

• Unnecessary costs• Reduced opportunity for new patient

visits• Dissatisfied referring providers• Underutilization of appropriate and

necessary care– Potential for delayed diagnosis and

management of secondary health issues & cancer recurrence

Cancer survivorship: Why the gaps in care?

• Health care providers of survivors– Are often focused on other issues

– Cannot keep up with demand– Often lack knowledge about

survivorship– Do not communicate well with

one another

- Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217 - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost inTransition. The National Academies Press: Washington, D.C.

Oncologist Workforce Shortage Looming

Erikson et al., ASCO Workforce Report, JOP, 2007

14 % increase14 % increase

48 % increase48 % increase

Gap of 9.4-15.0 million visitsGap of 9.4-15.0 million visits

68% of oncologist’s visits are for care of patients 68% of oncologist’s visits are for care of patients

> 1 year from diagnosis > 1 year from diagnosis

Consequences

• Much cancer survivorship care must be shifted to the community & primary care– Oncologists must see new patients

• Cancer survivors will increasingly shoulder burden of navigating ongoing care– self-management strategies will assume

increasing importance

Institute of Medicine & National Research Council, 2006;

Opportunity!

• Nurses strengths/skill sets are perfectly positioned for survivorship care– Prevention & education– Early detection– Intervention – Coordination – Promoting self-management

Survivorship care:What are its components?

• Prevention

• Surveillance

• Intervention

• Coordination

Institute of Medicine & National Research Council, 2006

Survivorship care:What are its components?

• Prevention of new & recurrent cancers, and of other late effects

• Surveillance for cancer recurrence, or second cancers; assessment for medical and psychosocial late effects

• Intervention for consequences of cancer & its treatment, including symptoms and medical & psychosocial problems

• Coordination between specialty & primary care

Institute of Medicine & National Research Council, 2006

Nurse-led survivorship care• Definition

– Delivery of evidence-based, patient-centered care focused on outcomes, delivered by APNs

• Barriers– Patient perceptions – Physician (consultant) perceptions– Competing responsibilities

• Solutions– Partner & establish credibility first– Set expectations from start of treatment– Share data!

Gates and Krishnasamy (2009). CancerForum 33

Evolving data on outcomes of nurse-led survivorship care

• Pilot studies of U.S., Australia “end of treatment/transition visits” show: – high patient satisfaction1,3,4

– reduced patient concerns/unmet needs2,4

– improved preparedness to manage healthcare3

1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011; 1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;

Randomized trials of nurse-led care

• RCT’s of specialty nurse-led models of follow-up care (U.K., Sweden) show:– No difference in time to detecting recurrence or

in overall survival5, 8

– Equivalent or superior patient satisfaction5,6,8 &

QOL7,8

– Improved symptom control8

– No increase in anxiety5,7,8

– Greater referrals and liaison w/support services9

5. Beaver et al., ’09 6. M Kimman et al., 2010; 7. Kimman et al., 2011. 8. Koinberg et al.2004, 9. Faithfull et al Br J Cancer. 2001;85:1853-64.

Global care models involving nursing

• U.K.• Australia• Canada• U.S.A.

Cancer Survivorship Care: Models

• What is a “model” of survivorship care?– No broad consensus– “Involves a broad an holistic approach to

follow-up care for cancer survivors, addressing multiple needs”

– Models highly variable across settings– Common goal

• Improving quality of care through comprehensive, coordinated, tailored follow up care

M.T. Halpern et al (2015). Models of Survivorship Care. M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract J Oncol Pract 1111(1).(1).

What is the evidence for various models?

• Bottom line– Extremely limited, research needed!

• Technical brief prepared for AHRQ*– Only 9 studies meeting criteria

• Include > 2 survivorship care components

– Identified nurse-led, physician-led, survivorship care plan centered, & individual vs. group models

*AHRQ = Agency for Healthcare Research and Quality M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11(1).

U.K. – National Cancer Survivorship Initiative

• Partnership between National Health Service (NHS), MacMillan Cancer Support, Department of Health– …. And many others

• Focus– Risk-stratified pathways for breast,

prostate, and colorectal cancer• Nurse role critical to implementation!

– Special thanks to Surpal Grewal, CNS for sharing her role!

http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf

U.K. – National Cancer Survivorship Initiative

http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdfMAC14481howtoguide.pdf

Preliminary data on pathways from NHS improvement sites

http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf

Critical elements for self-managed pathway•Remote surveillance, IT support•Guaranteed reaccess•Patient needs

Nurse specialist central to self-management pathway

U.K.: Moving survivorship earlier in the continuum

http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf

Australia

• Thanks to Michael Jefford and Nicole Kinnane for sharing!

Canada

• Example from Ontario• Thanks to Jennifer Jones, PhD

Survivorship Care: Ontario

Wellness Beyond Cancer Program

• Group sessions for patients and families post-treatment to promote self care and empowerment

• A consultation service for family physicians/nurse practitioners including a rapid re-entry process

• A health professional educational strategy• An evaluation framework & plan for a

research agenda.

Content of SCP

1) Disease information2) Treatment information 3) Surveillance Plan4) Persistent and late effects and their

management 5) Symptoms to report6) General health and wellness

informationElectronic solution:

Medical information drawn from existing UHN Medical information drawn from existing UHN databasesdatabases

Lives in EPR as a link to external platformLives in EPR as a link to external platform

Survivorship Care Program Development

Electronic SCP

Nursing Training

Model of Delivery

On-line Education

Models of Care – U.S.

Clinical Models• Multidisciplinary• Disease specific• Consultative service• Integrated Care

Model• Others

– “Shared Care” model an umbrella for several

Providers• MD

• Oncologist • Primary care

• Nurse Practitioners

• Oncology • Primary care

• Combined MD/NP• Nurse navigators

Multidisciplinary

Advantages• Easy for patients• Comprehensive• Good model for complex

patient (brain tumors)• Common pediatric model

Challenges• Resource intense• Difficult to coordinate• Possible multiple co-pays• Not everyone needs all

services

•Patients seen/evaluated by different providers in the context of a single clinic visit

•Oncology, endocrinology, neuropsychology, neurology, social work, etc.

Consultative Service

Advantages• Serves unrestricted survivor

population, outside referrals• Provides core service, tx

summary/care plan• Reinforces need for primary

care f/u and transition out of cancer clinic setting

Challenges• Difficult to be “expert” in

long term f/u issues for all diseases

• Difficult to have consensus guidelines for f/u for all

• Buy in from patients & multiple providers for patient referrals difficult (patient choices for PCP)

One time or annual consult visit

general survivorship issues

provide treatment summary/care plan

Referral to subspecialist, PT, nutrition, psych, etc.

Establish primary care home for survivor

Group Survivorship Care

Group survivor visits (Duke)– 6 survivors per group session– Individualized TS prepared pre-visit by NP– Survivor engaged in preparing SCP– 45 minute group session followed by <20

minute post-session visit with NP– Multi-disciplinary providers (SW, PT,

nutrition) available if desired

Outcome data:– < time to available appt (29.4 to 26.7

days)– 115 new openings per year

Trotter K. et al., 2009. Trotter K. et al., 2009.

Disease/Treatment Specific

Advantages• Focused scope of practice• Easier to make consensus

guidelines for f/u• Good model for complex

patients (brain tumors, HCT)

• Good way to start out

Challenges• Inequality • May not address survivors

with greatest needs

• Survivorship clinic for specific cancer type

• e.g., breast, testicular, GYN, GI, Young Adults

• Can be developed for psychosocial services only

Integrated Care Model

Advantages• Easy transition for patients• Access to treatment

history• Works well for surveillance

of recurrent/new cancer as well as for late effects

Challenges• May restrict to certain

diseases• Patients may be reluctant

for transition to primary care

• May be difficult in a busy clinical practice

Survivorship visit with treating oncology team

Survivorship NP or nurse navigator

Yearly or more frequent visits

Multidisciplinary supportive care referrals(PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx,

CAM)

Multidisciplinary supportive care referrals(PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx,

CAM)

DIAGNOSIS TREATMENT

Transition visit -TS/SCP- 4 goals

Primary oncology team (MD +/- NP & nurse)

EARLY FOLLOWUP

SURVIVORSHIPPOST-TX FOLLOW UP

LONG TERM POST-TX FOLLOW UP

UPENN INTEGRATED CARE MODEL

Pre-visit assessment

Nurse Practitioner

Pre-visit assessment

Ongoing care visits-4 goals of surv Care-Risk-stratified transition to PCP

Survivorship Starting at Diagnosis

Minnesota Oncology– CNS/nurse navigator model– Visits at baseline, mid-cycle, EOT*– FACT-G screen each visit; drives

personalized care – FACT-G plus SCP at EOT

Outcomes– High satisfaction (92% valued visit)– Prevalent symptom concerns– Cost/resource data not reported

*EOT = End of treatment

O’Brien and Stricker (2014).

Survivorship Models

• Common themes– No one size fits all!– Comprehensive needs assessment key– Existing programs must support

identified needs– Survivorship care plan is only a tool – Care must be tailored to the individual

Survivorship Care Plans in Context

• “It’s not about the paper, It’s about the process” (Melissa Hudson)

• …. a survivor care plan is only as good as the services that it documents.

• … it is the services that a plan documents that are so incredibly valuable to cancer survivors.

Silver, J. Physical Medicine and Rehabilitation 3, 503-506

Potential nursing roles in any cancer care setting

• Recognize that cancer survivorship begins at the time of diagnosis– Address potential long-term effects at time of diagnosis

• Recognize that end of treatment is a difficult transition period for survivors

• Assess patients for survivorship-related concerns– Screening for psychological distress, impact on family and

relationships, practical concerns– Assess for potential late effects, persistent symptoms

• Refer to appropriate supportive services– Community resources– Support groups, psychosocial support, family risk evaluation– Specialized clinics & services

• Lymphedema, pain, physical therapy and rehabilitation

Potential nursing roles in any cancer care setting

• Organize, coordinate, & communicate plan of follow-up care– Is there an approach to cancer survivorship

care at your institution?– Be part of the team

• Develop educational & supportive programs– Individualized education– Group classes– Newsletters/publications– Patient conferences with a focus on cancer

survivorship

Conclusions• Cancer survivorship begins at the time of

diagnosis, but is a distinct phase of the cancer care trajectory

• Cancer survivors experience myriad unique needs that often remain unmet

• Processes, models, programs, & tools for improving cancer care are evolving

• Nurses are well prepared to play a critical role in improving cancer survivorship care & outcomes for growing #s of survivors