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.