Measuring Quality of Life in Home Parenteral Nutrition Outpatients is a Complex Art

Background: Patients treated with home parenteral nutrition often have impaired quality of life (QoL). The use of QoL measurements, may provide the possibility to prioritize problems between clinician and patient and to monitor response to treatment. Objective: To find the two tools most suited for assessment of QoL in our HPN-patients. Further, to investigate quality of life, patient’s perception of tools, and the sensitivity to hand grip strength (HGS) and internal validity of the preferred tool. Methods: The iterative multi-method design included document analysis, semi-structured patient interviews, and a questionnaire based investigation using the two tools. Results were compared to HGS. For statistics, unpaired t-test and Mann-Whitney were used. Results: EORTC-QLQ-C30 and HPN-QOL address the eight domains found in the 13 patient interviews. Thirty-one patients replied to QOL-questionnaires. Low QoL was found by EORTC-QLQ-C30, General Health (GH)=51.26 (SD±4.28). Using HPN-QOL, QoL was slightly better (GH=69.85 (SD±3.62)). Worst items were employment, sexual function, ability to holiday, fatigue and sleep. Differences between tools were seen for physical function (p=0.00), and fatigue (p=0.02). For the preferred “HPN-QOL” the association between “General Health” and “The physical function score” and HGS were insignificant. Evaluation of internal validity with Cronbach`s α test 64.28% were above 0.7. Conclusion: Eight domains found by interviews were reflected in EORTC-QLQ-C30 and HPN-QOL. Patients preferred the HPN-QOL. QOL was decreased and an ongoing assessment using HPN-QOL seems relevant, even though our measures did not show association with HGS. Internal validity was fair for HPN-QOL. Keywords: Home parenteral nutrition; Intestinal failure; Quality of life; Patients; Outpatients; HPN-QOL