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.
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These combined approaches seem to increase adaptation, social functioning, and quality of life while reducing distress and symptoms in AP-ROD.
“All these approaches seem to increase adaptation, social functioning, and quality of life (QOL), while reducing distress and symptoms through the understanding and treatment of current problems.”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
Programs combining multiple approaches, such as CBT, ACT, psychoeducation and physical activation, seem promising for AP-ROD.
“In a recent critical literature review, Bardon, Guillemette [18] found that programs combining multiple approaches, such as cognitive behavioural therapy (CBT), acceptance and commitment therapy (ACT), psychoeducation and physical activation, seem promising for AP-ROD.”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as Bardon, Guillemette [18]
Group therapy may meet several patients' needs, such as reducing social isolation and allowing patients to share their experience, while also improving access to adequate psychosocial support and care.
“Group therapy may meet several patients’ needs, such as reducing social isolation and allowing patients to share their experience, while also improving access to adequate psychosocial support and care [18].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
Few studies have addressed the psychosocial interventions needed to support patient populations with ROD.
“Few studies have addressed the psychosocial interventions needed to support patient populations with ROD, even if the need to develop and evaluate such support and studies have been repeatedly highlighted [18].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
ACT has shown promising results in improving the well-being and individual empowerment of ROD-patients.
“Acceptance and commitment therapy (ACT) has shown promising results in improving the well-being and individual empowerment of ROD-patients [18].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
Group delivery and individual intervention can achieve similar results with AP-ROD.
“Bardon, Guillemette [18] indicate that group delivery and individual intervention can achieve similar results with AP-ROD.”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as Bardon, Guillemette [18]
Web-based programs may be particularly relevant to patients who live in remote areas or who are limited in their movements.
“For example, Web-based programs may be particularly relevant to patients who live in remote areas or who are limited in their movements [18].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
Connect-ROD is grounded in three complementary theoretical approaches: ACT, community psychology, and psychology of liberation.
“The program is grounded in three complementary theoretical approaches that were chosen because they showed promising results in group settings with patients dealing with chronic, severe, rare or orphan diseases [18]”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
Programs usually involve patients with the same disease, but the recent review by Bardon, Guillemette did not identify any specific scientific or clinical argument to support either choice.
“However, programs usually involve patients with the same disease, but the recent review by Bardon, Guillemette [18] did not identify any specific scientific or clinical argument to support either choice.”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
Online groups increase participation of geographically isolated or less mobile patients.
“Online groups increase participation of geographically isolated or less mobile patients [18].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [18]
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Rare diseases: a comprehensive literature review and future directions
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“…that were chosen because they showed promising results in group settings with patients dealing with chronic, severe, rare or orphan diseases [18], specifically: – Acceptance and commitment therapy (ACT) has shown promising results in improving the well-being and individual empowerment of…”
BackgroundMethodResultInfluentialSelf-citationSigurðardóttir, S., Johannessen, T. J., Stenberg, U., Systad, S., Duinker, I. L., Bogart, K. R., & Feragen, K. B. (2026) · Research Square · doi:10.21203/rs.3.rs-8975124/v1
Sinan, I., Johnston, M., & Marwaha, A. (2026) · Genetics in Medicine · doi:10.1016/j.gim.2026.102592
Williams, E., Horton, R., Mulholland, T., & Roper, L. (2026) · doi:10.2196/preprints.104493
Lapenda, I., Al‐Nabti, A., Campacci, N., de Oliveira, Z. N. P., Samorano, L. P., Gomes, L. L. A., Carneiro-Sampaio, M. M. S., & Patriota, R. (2026) · Pediatric Dermatology · doi:10.1111/pde.70368
- Authors
- Bardon, C., Guillemette, A., Rioux, M.-E., & Rivard, M.
- Affiliations
- Université du Québec à Montréal (CA)
- Psychologie, Université du Québec à Montréal, Montréal, Canada
- Corresponding author
- Bardon, Cécile
- Venue
- Disability and Rehabilitation
- Publisher
- Informa UK Limited
- Published
- 2022-08-18
- Volume
- 45
- Issue
- 16
- Pages
- 2567-2577
- ISSN
- 0963-8288 (ISSN-L)
- 1464-5165
- OpenAlex
- W4292407481
- Cited by
- 8
- References
- 67
- Citations by year
- 2026: 4 · 2025: 2 · 2024: 2
- FWCI
- 0.12
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Disability and Rehabilitation (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Fondation du grand défi Pierre Lavoie
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Medical Practices and Rehabilitation
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Keywords
- rare diseases, group therapy, psychosocial interventions, quality of life, well-being, social functioning, psychosocial support, acceptance and commitment therapy, cognitive behavioral therapy, psychoeducation, adults with chronic illness
- MeSH terms
- Adult, Behavior Therapy, Humans, Quality of Life, Cognitive Behavioral Therapy, Rare Diseases, Acceptance and Commitment Therapy
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