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
Bibliographic record
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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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.005 | 0.023 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.003 | 0.003 |
| Bibliometrics | 0.004 | 0.004 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.002 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".