Health-Related Quality of Life in Community-Dwelling Persons Living With Enterocutaneous Fistulas
Bibliographic record
Abstract
PURPOSE: The purpose of this study was to measure health-related quality of life (HRQOL) of community-dwelling patients with enterocutaneous fistulas (ECFs). DESIGN: The study was nonexperimental and used mixed methods, incorporating both quantitative and qualitative techniques to guide data collection and analysis. SUBJECTS AND SETTING: Participants were recruited using a nonprobability, convenience sampling strategy. Patients living with ECFs in the community were identified by an ET nurse at St. Michael's Hospital in Toronto, Ontario, Canada. INSTRUMENT: The questionnaire incorporated a modified version of the Stoma Quality of Life Scale (SQOLS); specifically, the term stoma was replaced with enterocutaneous fistula. The SQOLS is divided into 2 sections: The first queries overall satisfaction with life, and the second section queries 5 domains related to HRQOL, work/social functioning, sexual/body image, stoma (altered to query ECF) function, financial concerns, and skin irritation. This modified version of the SQOLS underwent face and content validation from clinicians with expertise in ECF management. METHODS: Questionnaires were distributed to eligible participants over a 20-month period in 2009 to 2010. Sixteen questionnaires were completed and returned yielding a response rate of 47.1%. RESULTS: Health-related quality of life was negatively affected by an ECF, as evidenced by low scores across all domains. The median scores for overall satisfaction with life in general in the past month were low (median scores 2.75 and 2.25, respectively) out of a possible score of 10. Respondents' median scores on 5 HRQOL domains queried by the SQOLS were also low at 25 to 39.59 out of 100. Thematic analysis of patient comments revealed a loss of normalcy, constant worry about the ECF and management of adjacent skin, depression and anxiety, and discomfort associated with presence of the ECF. The few positive comments primarily focused on support provided by family and caregivers. CONCLUSIONS: Findings from this study reveal that an ECF exerts a markedly negative impact on HRQOL that may be partially ameliorated by support from family and caregivers.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".