Brief, Peer-Delivered Self-management Intervention for Patie
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This JAMA Psychiatry study suggests that participation in a brief intervention that combines targeted self-management modules and peer support helps patients with rare chronic diseases cope better than receiving only care as usual.

Patients coping with rare diseases need psychosocial support. This study was aimed to evaluate the efficacy of a brief, transdiagnostic, peer-delivered intervention for patients with rare diseases in addition to care as usual (CAU) compared with CAU only.

In this 2-group randomized clinical trial conducted, patients were recruited via specialized clinics and patient organizations across Germany and participated from home. The study included consecutive adult patients with neurofibromatosis type 1, Marfan syndrome, primary sclerosing cholangitis, and pulmonary arterial hypertension who have limited functionality because of the disease. Of 143 patients screened for eligibility with a semistructured telephone interview, 89 were randomized: 45 patients were randomly allocated to the peer-delivered intervention group, and 44 to the control group; 87 patients completed the 6-month follow-up assessment.

--Six months after the intervention, but not directly after completing the program, the intervention group had significantly higher rates of acceptance (ICQ) of the disease (primary outcome) compared with the CAU group.

--Mean (SD) baseline ICQ scores were 9.61 in the control group and 9.86 in the intervention group. Mean (SE) ICQ scores at 6 months were 10.32 for the control group and 11.79 for the intervention group, with a significant mean difference of ?1.47.

--Several secondary outcomes, including different coping strategies, social support, and mental quality of life, were significantly higher after the intervention compared with the control group.

In this randomized clinical trial, a self-help and peer counseling intervention improved patients’ acceptance of their rare chronic diseases. Self-management and peer support can efficiently address the unique care needs of patients with rare diseases.