Development and validation of the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric outcome measure for Home Parenteral Nutrition. Issue 3 (June 2018)

• Record Type: Journal Article
• Authors: Wilburn, Jeanette; McKenna, Stephen P.; Heaney, Alice; Rouse, Matthew; Taylor, Michael; Culkin, Alison; Gabe, Simon; Burden, Sorrel; Lal, Simon
• Is Part Of: Clinical nutrition. Volume 37:Issue 3(2018)
• Page Start: 978
• Page End: 983
• Publication Date: 2018-06
• Subjects: Home Parenteral Nutrition -- Intestinal Failure Type 3 -- Patient-centric -- Patient-reported outcome measure -- PNIQ -- Quality of life; CDI Cognitive Debriefing Interviews -- DIF Differential Item Functioning -- IF Intestinal Failure -- HPN Home Parenteral Nutrition -- HPN-QoL Home Parenteral Nutrition-Quality of Life questionnaire -- HRQL Health-Related Quality of Life -- IQR Interquartile range -- NHP Nottingham Health Profile -- OBC Outcome Based Commissioning -- OBR Outcome based Reimbursement -- PROM Patient-Reported Outcome Measure -- PSI Person Separation Index -- QoL Quality of Life -- RUMM Rasch Unidimensional Measurement Model -- SBS-QoL Short Bowel Syndrome Quality of Life questionnaire -- SF-36 Short-Form 36 -- PNIQ Parenteral Nutrition Impact Questionnaire; Critically ill -- Nutrition -- Periodicals; Diet therapy -- Periodicals; Parenteral feeding -- Periodicals; Enteral feeding -- Periodicals; Enteral Nutrition -- Periodicals; Parenteral Nutrition -- Periodicals; Metabolism -- Periodicals; Diétothérapie -- Périodiques; Alimentation parentérale -- Périodiques; Alimentation entérale -- Périodiques; Nutrition -- Périodiques; Diet therapy; Enteral feeding; Nutrition; Parenteral feeding; Electronic journals; Periodicals; Electronic journals; 615.854
• DOI: 10.1016/j.clnu.2017.04.004
• Languages: English
• ISSNs: 0261-5614

Abstract

Summary: Background & aims: Patients with Type 3 Intestinal Failure (IF) who need Home Parenteral Nutrition (HPN) face several clinical, psychological and social problems. The study was designed to produce and test the first patient-centric measure for HPN ('PNIQ: Parenteral Nutrition Impact Questionnaire'). The new measure focused on the extent to which patients were able to fulfil their human needs. Methods: Questionnaire content was derived from the analysis of transcripts of interviews conducted with UK HPN patients. Cognitive debriefing interviews (CDIs) were performed to ensure patients found the draft scale clear, relevant and accessible. Finally, a test–-retest postal validation survey was conducted to reduce the number of items in the scale and to ensure that; it was unidimensional, reproducible and had construct validity. Results: The 30 interview transcripts were analysed to identify issues related to a wide range of needs. Fifteen CDIs showed that patients found the draft scale easy to complete and highly relevant. The postal survey included 233 patients on HPN recruited through two IF units. Items were rejected if they did not fit the Rasch model, had too similar content to other items or displayed differential item functioning related to age, gender or underlying mechanism of IF. A 20-item unidimensional scale was identified with high internal consistency (0.91) and test–retest reliability (0.92). Scores on PNIQ correlated moderately highly with social isolation, emotional reactions and energy level and were related to perceived interference on life of HPN. The underlying cause of IF did not influence the way the scale worked. Conclusions: The PNIQ is a scientifically rigorous, unidimensional outcome measure that provides a complete assessment of the effect of HPN on everyday life. It will prove useful for measuring patient value in clinical practice and for determining outcome in clinical trials, audit, economic evaluations and outcomes-based reimbursement.