Peer-Delivered Intervention Can Increase Patients’ Acceptance of Rare Diseases

Results of a clinical trial indicate peer-delivered interventions can help patients with rare diseases achieve disease acceptance.

A self-help and peer counseling intervention improved patients’ acceptance of their rare chronic diseases, according to trial results published in JAMA Psychiatry.

Currently, over 6000 rare diseases exist with differing symptoms and courses; most are chronic, progressive, life threatening, and disabling. An estimated 300 million people worldwide suffer from a rare disease.

“With each single condition being rare, affected patients lack information on the course of their disease and treatment; geographical spread leads to difficult access to adequate care and a lack of contact with peers with the same disease,” authors wrote.

Despite these challenges, previous studies have found patients who accepted their chronic conditions exhibited more emotional stability, less psychological distress, and better mental well-being.

To determine the efficacy of a tailored self-management and peer counseling intervention in addition to care as usual (CAU) compared with CAU alone, researchers conducted a 2-group randomized clinical trial.

“Self-management interventions aim at supporting patients as active participants in their treatment, dealing with the physical and psychological consequences of a chronic disease and changes in lifestyle,” the authors said. The intervention’s effectiveness has also been demonstrated in patients with different chronic conditions.

All study participants (N = 89) had 1 of the 4 following rare diseases: neurofibromatosis type 1 (n = 22), Marfan syndrome (n = 11), primary sclerosing cholangitis (n = 41), or pulmonary arterial hypertension (n = 15). Patients were recruited from centers and organizations across Germany and were at least 16 years old.

The CAU-alone group acted as a control cohort (n = 44). These patients had the option to participate in the intervention after 6 months of follow-up. Data assessments were completed prior to the intervention, directly after the intervention, and 6 months post intervention. The mean (SD) participant age was 46.3 (14.9) years, and the majority (66%) were women.

Peer counselors had “the same 4 conditions as study participants who were coping well with their disease, supported the program, and had sufficient time to participate” in the study. Each counselor consulted about 4 patients, and the 6-week intervention combined structured self-management, an acceptance and commitment therapy (ACT), and peer counseling.

Eighty-seven patients completed the 6-month follow-up, and all patients assigned to the intervention group completed the intervention.

Analyses revealed:

  • Six months after the intervention, but not directly after completing the program, the intervention group had significantly higher rates of acceptance (illness cognition questionnaire [ICQ]) of the disease compared with the CAU group
  • Mean (SD) baseline ICQ scores were 9.61 (3.79) in the control group and 9.86 (3.40) in the intervention group
  • Mean (SE) ICQ scores at 6 months were 10.32 (0.42) for the control group and 11.79 (0.42) for the intervention group, with a significant mean difference of −1.47 (95% CI, −2.63 to −0.31; P = .01)
  • 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
  • The intervention and CAU groups did not differ after the intervention regarding depression or anxiety

“Fostering meaningful activity in the presence of distress has been argued as a key feature that makes ACT a suitable, transdiagnostic approach for patients with chronic conditions,” the researchers wrote.

However, they cautioned against generalizing results to patients with other rare chronic conditions. Because neither the research team nor the patients were blinded to group allocation, bias may have been present in the study, marking a limitation.

“Peer-to-peer approaches can be a valuable component of comprehensive health care by integrating patients’ expertise,” the researchers concluded. “The novel intervention targets the shared needs of a large group of patients, thereby presenting a promising and feasible approach to improve care for patients with rare chronic conditions.”


Depping MK, Uhlenbusch N, Härter M, Schramm C,  Löwe B. Efficacy of a brief, peer-delivered, self-management intervention for patients with rare chronic diseases. JAMA Psychiatry. Published online February 24, 2021. doi:10.1001/jamapsychiatry.2020.4783

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