cancer thriving and surviving

http://patienteducation.stanford.edu

Medicine 2.0 ConferenceKaty Plant, MPH

Kate Lorig, RN, DrPHStanford Patient Education Research Center

Evidence Based Online Self-Management Programs

Cancer Thriving and Surviving ** Better Choices, Better Health Better Choices, Better Health – Diabetes Better Choices, Better Health – Arthritis Building Better Caregivers

What is Self-Management?Self-management is defined as the tasks that

individuals must undertake to live with one or more chronic conditions.

These tasks include having the confidence to deal with the medical management, role management,

and emotional management of their conditions.

Institute of Medicine, 2004

Foundation of All the Programs

Built on structured patient and professional needs assessments

Systematically use strategies to enhance self-efficacy:

Goal Setting Modeling Reinterpretation of

Symptoms Social Persuasion

Characteristics of the Program Six-week workshop (entirely on-line anywhere

there is Internet access – even dial up) 20-25 cancer survivors per workshop New workshop session starts each week No “real-time” commitment – any time/any day Peer-led by two trained facilitators who are

also cancer survivors– supervised by online mentor/safety monitor

Highly interactive Participants asked to log on 2-3 times a week

for a total of 1-2 hours

Special Qualities of the Program

• Peer led (2 peer facilitators) to reinforce modeling Standardized training for facilitators

• Standardized participant materials• Several topics per session• Systematic use of strategies to enhance self-efficacy• Evaluated in randomized trials• We don’t manage participants – we engage them and

provide them proven tools to better self-manage.

Recruitment

Variety of sources including MacMillan Cancer Support Trust Facebook and Organization web site

312 survivors left contact information 145 completed baselines

135 participated in 1 or more workshop sessions

110 filled out 6 month surveys

Challenges to Thriving

Workshop Topics

Topics Session 1 2 3 4 5 6

Self-Management Overview X X Stress/Symptom Management X X X Problem Solving X X _ Finding Joy X _ Setting Goals X X X X X X Making an Action Plan X X X X X X Feedback X X X X X Exercise X X _ Weight Management X _ Healthy Eating X X _ Body Changes X _ Difficult Emotions X X _ Communication X X X Making Decisions X X _ Sleep X _ Fatigue X _ Future Plans X X Effects of Treatment X _ Medications X _ Evaluating Treatments X _ Depression X _ Working with Health Care Team X X

Participation in Study Workshops

Percent completing session 6: 53% Percent completing all 6 sessions: 47% Percent logging in at least once to each

session: 83% Mean of 5.5 logins per participant per week Over 1300 pages visited per participant Over 1000 posts per workshop

British Study Demographics (N=135)

Age 48.6 years (SD=9)Male 18%Education 48% professional

or degree programMarried 56.2%White 96%Time since cancer treatment 1.5 years (SD=1.3)

Range 1 month to 5 years

Types of Cancer Represented

Breast 42%Uterine/Ovarian 11%NHL 6%Colon 10%Other 9%

Types of Treatment

Surgery Only 16%Radiation Only 13%Chemo Only 4%Combination 66%

British 6 mo Changes (N=110)

PHQ Depression p<.01WHI Insomnia P<.01Brief Fatigue Inventory p<.01Role Function p<.05Stress p<.01Social Support NSAerobic Exercise p<.05Communication with Physician NSMD Visits NS Oncology Visits p<.01

Coming Soon

Data Analysis and Publication of Randomized US trial of US Cancer Survivors

Engagement Study Looking out Qualitative Data and Health Outcomes

National Dissemination of the Cancer: Thriving and Surviving Program through National Council on Aging