By: Kate Lorig, RN, DrPH
Stanford Patient Education Center
Disclosures: Dr. Lorig has no significant financial interest or relationships to disclose.
- Define self efficacy
- Discuss what the added extra to normal rheumatological practice is by having patients learn to self-manage.
Chronic Diseases Require Changes in Health Care Practice
The goal is function and comfort, not cure. The sites of care change from clinic and hospital to community. The role of the health care provider changes from principle caregiver to teacher and partner. The role of the patient changes.
How does the role of the patient change?
- They must manage the disease(s) / doing exercise, taking medications
- They must maintain their life roles / whatever makes them who they are
- They must deal with the emotional consequences of the disease(s) / chronic illness patients are often subclinically or clinically depressed
- They are sometimes the only carrier of vital information.
Self-Management: What is it?
The Institute of Medicine (IOM) defines self-management 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.
Stanford Self-Management Programs
Built on structured patient and professional needs assessments (usually focus groups)
There are up to 9 or 10 different interventions for different diseases at Stanford. They are built on structured patient and professional needs assessments. The work with patients is undertaken to find out what their problems are. It’s very simple with arthritis patients; the number one problem is pain. The second is disability/function. The third can be depression/emotions.
The next step is to approach health professionals and find out what people need to know. Prioritization and simplification of messages is key.
Systematically use strategies to enhance self-efficacy with four skills:
- Skills Mastery–If somebody does something. it’s very hard for him or her to say they can’t do it. Patients make a weekly commitment to do something––anything they want.
- Modeling–It is incredibly powerful for patients to see people like themselves. It shapes the behavior.
- Reinterpretation of Symptoms–Patients tend to act based on beliefs, and they are irrational. For example, if the belief is that the disease causes fatigue, the answer is to rest. Fatigue has multiple causations: the disease; medication; lack of exercise; depression; and poor nutrition. Therefore, the patient has many ways of possibly dealing with that fatigue.
- Social Persuasion–People tend to do what people around them are doing.
Peer Led Small Groups/Internet
All groups at Stanford are lead by patients using standardized training and teaching protocols. Each session covers several topics, for example: traditional education, medication, exercise, etc.
- Arthritis Self-Management
- Chronic Disease Self-Management
- Diabetes Self-Management
- Positive Self-Management (HIV/AIDS)
Modes of Delivery
- Six week small Group (all programs)
- Six week via the Internet (chronic disease, arthritis, diabetes)
- One time Mailed packet (arthritis only)
Does it work?
Purpose:To compare the effectiveness of the Arthritis Self-Management Program with the generic Chronic Disease Self-Management Program for people with arthritis
A study of two small groups: (1) a randomized arthritis-specific program; and (2) a randomized chronic disease program where one-third to one-half of the participants had arthritis. The study included only the patients with arthritis.
The programs were both small groups and both community-based. Community-based means they are given in church basements and public libraries. Both groups were peer led, based on patient needs assessments. Each group used standardized materials, and was based on self-efficacy theory.
Both programs contained content based on:
- Difficult emotions
- Fatigue management
- Healthy eating
- Medication management
- Working with health professionals
- Cognitive techniques for pain/ symptom management
- Communication with family, friends and providers
- Problem solving
Some of the content varied. The arthritis self-management program had content about: osteoporosis; energy conservation; sleep; making non-traditional treatment decisions; and pain management. None of these topics were covered in the chronic disease program. The chronic disease self-management program covered: advance directives and better breathing––neither was covered in the arthritis program.
Study subjects (n=355)
After four months, the arthritis group had more improvement than the chronic disease group. Both groups saw improvements in role function, exercise and self-efficacy. The arthritis group also saw better health distress, less pain and less fatigue. All of these people were getting regular medical care, so any benefits are above and beyond traditional health care.
At one year, there was only one significant difference between the two groups: the arthritis group had less fatigue.
Arthritis self-management––internet delivered
A second study was undertaken to find out whether the small group program could be moved to the internet. Osteoarthritis, rheumatoid arthritis and fibromyalgia were the diseases included in this study.
It was a national sample, and participants were recruited largely over the internet via links on sites like the Arthritis Foundation, links on arthritis group pages, etc. If people left their name and said they wanted to be part of the study, they consented on-line. They completed a baseline questionnaire and then they were randomized to take the program or to wait for 12 months to take the program.
All the data was collected by the same self-reported questionnaires: Visual analog scales, the HAC, PHQ-9.
Study subjects (n=855)
|Age||52 years (22-59)|
Usage of program
There are six sessions, and the online group completed 4.6 out of 6 sessions with an average of 31 log-ons. Participants were asked to log on 2-3 times per week. 83% made at least one action plan and 84% of them participated in the bulletin boards where they talked to each other.
Each week there were about 20-25 web pages of interactive didactic material. Many of the pages would ask questions to capture data, for example: osteoarthritis causes more pain than rheumatoid arthritis, true or false, and then information to learn a little bit about it. Questions like “what kind of problems is your arthritis causing you” were asked.
There was a discussion center, which was four bulletin boards: action planning, problem solving, difficult emotions and celebrations. In a typical six-week course there were between 500 and 700 posts on the bulletin boards. Those bulletin boards are moderated each day by two peer moderators that look at them to be sure they are not trouble, people post things like “I get so depressed sometimes I feel like committing suicide”. That does happen once in a while, but it doesn’t happen much. Out of 5000 people online, the self-harm protocol has been used three times.
More the moderators are there, if somebody else doesn’t post within two days they will always post. So, someone always gets an answer to their post and to help people along if they need some help.
Six-month changes in health status
HAQ Disability, 0-3
At six months we were getting changes in pain, disability, health distress, role function; all the things that we wanted. So it seems that this intervention has an added extra, above and beyond normal medical care.
Improvements by diagnosis
All the effects were seen with people with osteoarthritis and rheumatoid arthritis. The participants with fibromyalgia had no effect.
Are the improvements important?
At 12 months, 76% of the participants had an effect size of 0.5 improvement in outcome. Forty-four percent had a moderate improvement in three or more outcomes. They had an effect size of 0.5 at three or more. Behavioral studies have multiple behaviors and multiple outcomes. Effect sizes and different outcomes are important to evaluate the real outcomes of studies.
Arthritis self-management mail-delivered random trial (n=922)
A third study was based on a one-time mail-delivered kit:
- One mailed packet (English or Spanish) containing:
- Self-Test (HAC, visual analog pain scale, visual analog fatigue scale and distress scale)
- Arthritis Helpbook
- Exercise Audio CD
- Relaxation Audio CD
- Tip Sheets
- Tip sheet Audio CD
All patients were recruited in North Carolina, or mostly recruited in North Carolina. They were self-identified and were asked the CDC and National Health questions about arthritis.
- Pain (10-10) -0.76
- Fatigue (0-10) -0.6
- Disability (0-3) -0.13
- Depression (0-33) -1.1
- Role Function (0-4) 0.34
Characteristics of Successful Programs
The program must be based on patient needs assessment, with an emphasis on: problem-solving, goal-setting/action planning, improving self-efficacy, patients helping patients, self-tailoring and modeling.
Health status usually improves. Health care utilization sometimes improves. The self-management programs appear to work across languages, cultures and economic status. The program also appears to be effective using various delivery modes (small groups, internet and mail).