Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease
Bibliographic record
Abstract
BACKGROUND: Patients living with various rare or orphan diseases (ROD) experience common psychosocial difficulties. Those need emerge from a combination of factors, such as the large variety of patients and the rarity of resources, as well as concentrated efforts on physical health needs that yielded increases in life expectancy and quality in patients. A gap is therefore rising in the consideration of psychosocial needs of patients, such as coping with the impacts of physical limitations, reducing social isolation and distress. To contribute to address this gap, we developed, pilot-tested and evaluated the acceptability, feasibility, implementation, and short-term effects of Connect-ROD, an online group intervention to support adult patients with a ROD (AP-ROD), which aims to improve coping mechanisms, reinforce sense of control, and support personal goals of AP-ROD. A qualitative study comprising of in-depth pretests, post-test interviews and standardized questionnaires, was conducted with 14 participants in two consecutive intervention groups. RESULTS: The Connect-ROD intervention is strongly anchored in acceptance and commitment therapy as well as community psychology approaches. A pilot test allowed us to improve on the initial structure and to produce a manualized 10-week program delivered online, made up of 2-h sessions comprising formal activities, exchanges and homework. The evaluation showed satisfactory acceptability and accessibility, compliant delivery by facilitators, and promising short-term effects on personal objectives, sense of control, coping mechanisms, symptom management, acceptance of the emotions associated with the disease, distress, self-efficacy, social support and connectedness. The program did not show short-term effects on overall quality of life. CONCLUSION: It is recommended that Connect-ROD is evaluated on a larger scale. It seems promising to support various AP-ROD who live with the complex psychosocial consequences of their disease.
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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 | 0.012 | 0.010 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.002 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.005 | 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".