Disclosures: One study author reports receiving grants from Robert Bosch Stiftung during the conduct of the study. The other authors report no relevant financial disclosures.
February 24, 2021
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Self-help, peer counseling intervention helps patients with rare chronic diseases cope

Disclosures: One study author reports receiving grants from Robert Bosch Stiftung during the conduct of the study. The other authors report no relevant financial disclosures.
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A self-help and peer counseling intervention helped patients with rare chronic diseases cope better than usual care alone, according to results of a randomized clinical trial published in JAMA Psychiatry.

Miriam K. Depping

“We aimed at developing an intervention that meets unmet support needs,” Miriam K. Depping, PhD, of the department of psychosomatic medicine and psychotherapy at the University Medical Center Hamburg-Eppendorf in Germany, told Healio Psychiatry. “To this end, we identified support needs and developed an intervention based on those needs. The 6-week intervention combines (1) peer support, thereby bringing patients with the same diseases in touch despite geographical spread and accounting for patients´ expertise, with (2) a self-help book with elements of acceptance and commitment therapy (ACT). ACT elements address dealing with unwanted experiences and adopting meaningful goals despite distress.”

The investigators aimed to determine the efficacy of a brief, transdiagnostic, peer-delivered intervention plus care as usual vs. care as usual only for individuals with rare diseases. The intervention included use of a self-help book and telephone-based peer counseling plus care as usual. They conducted a two-group among patients recruited from specialized clinics and patient organizations across Germany who participated from home. Participants were consecutive adult patients with neurofibromatosis type 1, Marfan syndrome, primary sclerosing cholangitis and pulmonary arterial hypertension who have limited functionality due to the disease. Life-threatening health status and ongoing psychotherapeutic treatment served as exclusion criteria. Mean participant age was 46.3 years, 66% were women and there were no group differences regarding baseline variables.

The researchers randomly assigned 45 individuals to the peer-delivered intervention group and 44 to the control group. A total of 87 (98%) completed the 6-month follow-up assessment. Acceptance of the disease assessed via the Illness Cognition Questionnaire (ICQ), with mean sum scores ranging from zero to 18 and higher values representing more acceptance, 6 months after the intervention served as the primary outcome. Secondary outcomes were self-reported coping strategies via the Health Education Impact Questionnaire, illness cognition via the ICQ and Illness Perception Questionnaire, depression severity via the Patient Health Questionnaire nine-item depression scale, anxiety severity via the Generalized Anxiety Disorder Scale, quality of life via the 12-item Short-Form Health Survey and social support via the Social Support Questionnaire. The researchers assessed outcomes before and after the intervention, as well as at 6 months follow-up.

Depping and colleagues reported significantly higher disease acceptance rates among the intervention group vs. the care as usual group 6 months after the intervention but not directly after completing the program. The control group had mean baseline ICQ scores of 9.61, whereas the intervention group had scores of 9.86. At 6 months, scores were 10.32 for the control group and 11.79 for the intervention group, with a significant mean difference of 1.47 (95% CI, 2.63 to 0.31). The researchers noted significant increases related to the intervention vs. the control group for several secondary outcomes, such as different coping strategies, social support and mental quality of life.

“The implementation of this low-threshold intervention with peer support extends care for this group of patients," Depping said. "The delivery by self-help book and telephone-based peer support helps serve this hard-to-reach group of patients.”