Experiences of Ambulatory Patients With Huntington's Disease With Case Management
Bibliographic record
Abstract
PURPOSE/OBJECTIVES: Huntington's disease (HD) requires high-quality care to reduce disruption of the patient system, prevent crisis situations, and prevent early admission in a nursing home. In the Netherlands, case management has been available for the last to 9 years for people with HD. However, there is a notable gap in understanding experiences and beliefs of HD patients regarding case managers' care, guidance, and support for quality of life. To improve the international quality of care for people with HD, insight in experiences of ambulatory HD patients with the care, guidance, and support received from a case manager HD (CMHD) is crucial. PRIMARY PRACTICE SETTING: Ambulatory care. FINDINGS/CONCLUSIONS: Ambulatory patients with HD highly appreciate and value the role and support of the CMHD. This was reflected in four themes: (1) the CMHD as a person, with commitment, sympathy, and reliability as central concepts; (2) the CMHD as a professional, with the key roles of coordinator, point of contact, expert, and supporter; (3) impact of the CMHD on quality of life, with support of coping with decline and monitoring the home situation as important subthemes; and (4) support of the CMHD for family members, with providing help and giving attention as subthemes. This insight into patients' experiences of the CMHD's role adds value to the improvement of the international quality of care for people with HD. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Commitment, expertise, support for both family members and patients, and bond of trust from the CMHD are experienced as very valuable. These qualitative findings from a patient's perspective add significantly to the body of knowledge on CMHD's role and practices as "spider at the center of the web."
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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 | 0.004 | 0.016 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.008 | 0.005 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.001 | 0.007 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.006 | 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".