Group intervention programs and their impact on well-being and quality-of-life for adults living with a rare or orphan disease – realist review of literature

Abstract

Purpose

Adults living with a rare or orphan diseases (ROD) experience common psychosocial difficulties that are often poorly addressed in usual care. This realist literature review aims to inform the development, evaluation and implementation of evidence based group therapy programs adapted to shared needs of patients living with various ROD.

Method

The review is based on an analysis of Context-Mechanism-Outcome configurations. It included 21 primary studies published between 2010 and April 2022 and used a PRISMA process for study selection and inclusion.

Results

Our results show that group psychosocial interventions can help reduce perception of symptoms and psychological impacts of disease, improve social functioning and support and quality of life in patients.

Conclusion

Group therapy programs seem promising for ROD-patients and should be considered within comprehensive treatment and support plans. However, more comprehensive studies of group therapies in context should aim to identify core active components of these interventions with ROD-patients.

Implications for Rehabilitation:

• Rare or Orphan Diseases are varied, difficult to diagnose and have a major impact on all aspects of the patients’ lives (physical, emotional, psychological, social, professional).

• Psychosocial support is a key but underdeveloped component to support the recovery trajectory for these patients.

• In this review of group interventions, we identified a few promising practices adaptable to patients living with Rare or Orphan Diseases (Acceptance and commitment therapy, cognitive behavioural therapies, psychoeducational programs).

• Patients who received psychosocial group interventions are likely to experience improvement in their quality of life.

Keywords:

• Cognitive behaviour therapy
• rare or orphan disease
• realist review
• group therapy
• acceptance and commitment therapy

Acknowledgement

The authors wish to underscore the contribution of Luc Dargis, librarian for CRISE to this review.

Disclosure statement

The Authors report there are no competing interest to declare.

Additional information

Funding

This project was carried out with financial support of a grant awarded by the Fondation du grand défi Pierre Lavoie (2019-2021).