Family Support Can Hurt, Not Help Diabetes Patients in Maine Workshop, Researchers Find
Investigators at the Maine Medical Center found that diabetes patients who had family members participate with them in a six-week chronic disease self-management group did not improve their blood sugar control, contrary to expectations. In this pilot study, the primary pre- and post-treatment measure was participants' hemoglobin A1c rates (HbA1c), a measure of how well blood sugar is controlled, in 197 diabetes patients who were randomly assigned to attend a six-week workshop either with or without their spouse or other family member. Secondary measures included health status, health behaviors, self-efficacy and use of medical services.
- Contrary to the investigators' expectations, there was a trend toward post-treatment improvement in HbA1c levels associated with participation in the patient-only group.
- Investigators found that participants were more affected by perceived criticism of family members than by the presence of family members in the workshop with respect to post treatment levels of HbA1c, health status and self-efficacy.
- The results indicate that family dynamics play a much stronger role than the mere presence or absence of family members during typical group medical visits. In diabetes, where life-style modification is essential, physicians need to assess family relationship patterns, educate patients as to how this affects their health and recommend counseling resources if indicated.
- In cases where relationship difficulties appear to be a stressor, the physician can educate the patient about the evidence showing that patterns of criticism affect overall physical and mental health and suggest resources to help them. This type of intervention might improve patients' overall health.
The Robert Wood Johnson Foundation (RWJF) supported the study with a $56,887 grant between June 2002 and December 2005.
Health care providers and policy makers have wondered whether family involvement in a patient's chronic diseases can make a positive difference in outcomes. Most research has focused on children and elderly populations, with little evidence about outcomes with adults, according to a 2001 Institute of Medicine report Health and Behavior: The Interplay of Biological, Behavioral and Societal Influences.
In October 2000, staff members at the Maine Medical Center received a 24-month $20,000 grant from the American Academy of Family Physicians. The grant supported a pilot study to assess the effect of family participation for patients with diabetes in the Chronic Disease Self Management Program, a six-week workshop for patients with chronic diseases. The program, which was developed at Stanford University in Stanford, Calif., emphasizes patients' ability to solve problems and manage their illnesses.
The Robert Wood Johnson Foundation provided a grant to the Maine Medical Center to continue the pilot study begun under the grant from the American Academy of Family Physicians. The principal investigator hypothesized that the patients who participated in the workshop with their families would experience improved health compared with patients whose families did not participate.
The principal investigator planned to look at changes in blood sugar control as the primary measure, with secondary measures including health status (general health, shortness of breath, pain, fatigue, health distress, disability, depression and social/role limitations), health behaviors (exercise, coping and communication with physician), health care use (visits to physicians, emergency rooms and hospital stays) and self-efficacy or patients' perceptions of their ability to control their diseases.
To determine blood sugar control, the investigators collected hemoglobin A1c rates from patient records. The hemoglobin A1c test helps determine the average blood sugar in the previous few months an indicator of how well a patient's diabetes is under control. A lower hemoglobin A1c reading indicates better control of diabetes. The American Diabetes Association recommends a reading of 7.0 or below for patients with diabetes.
Under the RWJF grant project staff:
- Worked with 14 family physician and internal medicine offices and 56 physicians in the Portland, Maine, area to recruit patients with Type II diabetes. Staff ultimately recruited 283 participants, of whom 197 attended the workshops (100 participants had been recruited prior to the RWJF grant). The investigator, who had worked closely with family physician practices in the past, ran into difficulty recruiting from internal medicine practices, where she did not have previous relationships. (See Lessons Learned.)
- Randomly assigned participants into either a workshop with a family member accompanying the participant or a patient-only workshop.
- Recorded hemoglobin A1c levels six months before the workshop began, a few weeks before the workshop started and again six months after.
- Asked participants to complete a nine-page survey about their background, health, symptoms, exercise, physical abilities, coping, the impact of illness on their daily lives, confidence in doing things, feelings, daily activities and use of medical services. Participants filled out the questionnaire six months before they participated in the workshop, a few weeks before and six months afterward.
- Had participants fill out a questionnaire that assessed family dynamics, including family emotional involvement and perceived criticism during the same three time periods as the other data was collected.
The investigators reported their key findings in a report to RWJF and an unpublished report (See the Bibliography):
- Contrary to the investigators' expectations, there was a trend for patients with diabetes whose family members accompanied them to the workshops to be associated with a slight increase in hemoglobin A1c rates (from 7.12 to 7.27). Participants in the patient-only group showed a trend to decrease in hemoglobin A1c rates (from 7.21 to 6.99).
- Participants were more affected by criticism or lack of emotional involvement of family members than simply the presence or absence of family members. Participants who perceived their family as more critical had poorer outcomes in hemoglobin A1c levels, general health, shortness of breath, pain as well as less confidence in managing their disease.
- Facilitators observed that participants in the patient-only workshops bonded much sooner than did those in the workshops that included family members. Family members were full participants in the workshop sessions. When family members discussed their own health issues, they may have kept diabetes patients from focusing specifically on diabetes as the primary focus of the group.
The principal investigator reported the following limitations:
- There were not enough patients to register statistically significant differences on all of the variables typically reported in the Chronic Disease Self Management questionnaire.
- Having an initial waiting period prior to attending the workshop complicated the results. Participants were on a waiting list for six months prior to attending the workshop. They filled out a questionnaire that addressed diet, exercise and other lifestyle issues, which may have influenced the participants to begin making changes in their approach to diabetes before they even entered the workshop.
The principal investigator drew the following conclusions from this pilot study:
- Family dynamics play a much stronger role than the mere presence or absence of family members during typical group medical visits. High perceived levels of criticism had negative effects on several health and self-efficacy variables.
- Groups that include strategies that address family dynamics will likely positively affect health. More work is needed on how best to promote family dynamics in health care settings. In diabetes, where life-style modification is essential, physicians need to assess family relationship patterns, educate patients as to how this affects their health and recommend counseling resources if indicated.
- Primary care physicians should ask patients about the quality of family relationships. Primary care physicians routinely ask patients about household composition and family medical history but rarely about the quality of family relationships. This could take place during prevention visits such as the annual physical. One simple question could be "What happens when you and your partner/spouse disagree?"
In cases where relationship difficulties appear to be a stressor, the physician can educate the patient about the evidence showing that patterns of criticism affect overall physical and mental health and suggest resources to help them. This type of intervention might improve patients' overall health.
- Budget adequate resources for recruitment and data collection. The recruitment rate for this project was 17 percent, whereas the typical recruitment rate when doctors encourage their patients to enroll in a study is 40 to 50 percent. Persuading a physician's office to participate in recruitment efforts requires a financial incentive, which was not possible under the project budget. (Project Director)
Similarly, the project relied on collecting hemoglobin A1c data prescribed by the primary care physician and were contained in each patient's medical record, rather than collecting the test data as part of the study. To collect the data, on occasion the principal investigator or a project staffer had to personally visit offices with which there was no previous relationship, which consumed valuable time. When such data were unavailable for participants at key time periods, they had to be dropped from the study analysis. (Project Director)
- Keep patient questionnaires short. The study used a nine-page questionnaire, which patients had to complete three times. Twenty-four percent of participants did not fill out the questionnaire the third time six months after the study saying that it was too long. A questionnaire that is three to five pages would be more reasonable. (Project Director)
GRANT DETAILS & CONTACT INFORMATION
Studying the Effects of Family Support on Diabetes Patient Self-Management
Maine Medical Center (Portland, ME)
Dates: June 2002 to December 2005
Julie M. Schirmer, L.C.S.W.
Type II diabetes a long-term (chronic) disease that develops when the pancreas cannot produce enough insulin, or the body cannot use insulin properly, to allow sugar (glucose) to enter cells and be used for energy. High blood sugar can harm many body systems.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Schirmer JM, Bourke Kuhn C and Korsen N. "The Influence of Family on the Management of Type II Diabetes." Unpublished.
Presentations and Testimony
Julie Schirmer, Conference on Families and Health, Society of Teachers in Family Medicine (February 26, 2004, Amelia Island, Fla.), "Assessing Family Participation in Health Care" Proceedings of the 2004 meeting available online.
Julie Schirmer and Celine Kuhn, Annual Conference of the Society of Teacher in Family Medicine (May, 2006, San Francisco, Calif.), "What's Family Got to Do With Health?" Proceedings of the 2006 meeting available online.
Report prepared by: Susan Parker
Reviewed by: Richard Camer
Reviewed by: Marian Bass
Program Officer: Terry L. Bazzarre