cancer thriving and surviving
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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