Quality of life in patients and in family members of those receiving home parenteral support with intestinal failure: A systematic review

Background & aims: People with type 3 intestinal failure require regular home parenteral support (HPS) for survival. Intestinal failure is a long term condition and HPS is a burdensome treatment so understanding quality of life (QoL) and how people live with HPS over time is essential. The aim of this review was to assess the impact of HPS on QoL in adults receiving HPS and their family members. Methods: A systematic review (PROSPERO 2020 CRD42020166197) of the literature was performed using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trails, PsycInfo, Web of Science and PROSPERO. Included articles were hand searched to identify any other relevant studies. Eligibility assessment was performed independently by two reviewers in an unblinded standardised manner. Quality was assessed using appropriate Joanna Briggs Institute critical appraisal tools. Data were extracted independently by two reviewers using predefined data fields. Certainty of evidence was assessed using GradePro. Results: Included in this review were 12 studies with 1236 patients receiving HPS. There were 10 observational studies and 2 randomised controlled trials. Only studies examining QoL in adults receiving HPS were found. There were no studies examining QoL in family carers of these patients. The quality of evidence was graded as low to high and the certainty of evidence for QoL was graded as very low to low. It was not possible to perform a meta-analysis so a narrative review was conducted. All of the studies considered quality of life using validated questionnaires. QoL of patients receiving HPS was lower than the general population regarding physical functioning. Patients had a higher QoL the fewer nights each week they received HPS. Conclusions: HPS prescriptions seemed to influence QoL. However, the certainty of evidence was very low to low so there is very little to limited confidence about the effect of HPS on patient QoL. Research into family members' QoL is lacking and requires further investigation.