Enterocutaneous fistula : Patients', families' and healthcare professionals' experiences - epidemiology and outcomes

Abstract: Introduction: Enterocutaneous fistula is a rare and complex condition with high morbidity. The condition causes multiple health problems, and it is both physically and psychologically demanding for the affected person and their families. Infection, fistula wound care challenges, electrolyte and fluid imbalance, and malnutrition render the individual in need of long periods of in-hospital care and homecare. This also places great demands on healthcare professionals and knowledge among healthcare professionals can be lacking. The patients have different needs and person-centred care is one way to promote individualised care based on the patient’s specific needs. Research about how enterocutaneous fistula affects the individual and their families is scarce, and healthcare professionals often have little experience providing care for these patients. There is also a lack of population-based studies on enterocutaneous fistula.Aim: The overall aims of the thesis were to explore patients’, family members’ and healthcare professionals’ experiences of enterocutaneous fistula, and to define the cohort of patients who developed an enterocutaneous fistula within a ten-year period in the southeast healthcare region of Sweden.Methods: This thesis is based on four studies and includes individual, dyadic, and focus group interviews as well as a retrospective study of medical records. The first study had a qualitative inductive design with individual in-depth interviews of nine patients with experience of living with an enterocutaneous fistula. The analysis was conducted using descriptive phenomenology according to Giorgi. The second study had a longitudinal qualitative design with in-depth dyadic interviews with seven dyads consisting of one patient and one close family member. The dyads were interviewed on three different occasions: before, shortly after and one year after reconstructive surgery. A phenomenological-hermeneutic analysis according to Lindseth and Norberg was performed. The third study had a qualitative descriptive design with five focus group interviews of healthcare professionals and the data were analysed using qualitative content analysis. The fourth study was a population-based cohort study with 187 participants and a retrospective review of medical records was performed.Result: Living with an enterocutaneous fistula meant facing an unpredictable life for months or years that causes several limitations in daily life for both the patients and their family members. Fear of leakage from the fistula appliance and dependency on intravenous supplementation caused social isolation. Both the patients and the family members struggled with psychological distress and support from the healthcare professionals was important. There were both positive and negative experiences of the provided healthcare. Lack of knowledge and understanding among the healthcare professionals affected the patients’ and families trust in the healthcare. Despite all, they were hopeful for the future and looked forward to having a life without the fistula.Providing care for patients with enterocutaneous fistula was complex, and time- and resource-consuming. The healthcare professionals struggled with different practical issues and providing care for these patients required an integrated approach involving different disciplines. Building long-lasting relationships with patients and their families was fundamental to the caring process.The annual incidence of enterocutaneous fistula was 1.87 per 100.000 persons. Cumulative enterocutaneous fistula related in-hospital care, until closure or end of follow-up, was median 4 (range 0–61) weeks. Thirty-seven per cent of the patients needed parenteral supplementation and 80% needed help with fistula wound care. Home-based healthcare, i.e., fistula wound care, resources for parenteral feeding and access to 24-hour emergency wound care at home, was provided to 42.2% of the patients. Estimated overall mortality at one, three, and five years was 33.7%, 42.1%, and 47.6%, respectively. Mortality was dominated by patients who did not have spontaneous closure of the enterocutaneous fistula or undergo reconstructive surgery.Conclusions: Enterocutaneous fistula is a serious condition with a high overall mortality and the patients need a lot of healthcare resources. The condition restricts the patient’s and family’s daily life and leads to social isolation and psychological distress. By promoting person-centred care and patient participation, the healthcare professionals can strengthen autonomy in daily life and improve the patient’s ability to cope with the situation. Regular team meetings of the multidisciplinary team, careful planning before discharge and providing person-centred care can facilitate the care process for everyone involved.