Alice Heaney1, Stephen P McKenna2, Jeanette Wilburn3, Matthew Rouse3, Michael Taylor4, Sorrel Burden5, Simon Lal4. 1. Galen Research, Manchester, M1 5BY, UK. Electronic address: aheaney@galen-research.com. 2. Galen Research, Manchester, M1 5BY, UK; School of Health Sciences, University of Manchester, Oxford Road, Manchester M13 9PL, UK. 3. Galen Research, Manchester, M1 5BY, UK. 4. Intestinal Failure Unit (H8), Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK. 5. School of Health Sciences, University of Manchester, Oxford Road, Manchester M13 9PL, UK; Intestinal Failure Unit (H8), Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK.
Abstract
BACKGROUND & AIMS: Several studies have been published reporting on the impact of Home Parenteral Nutrition (HPN) on the lives of people with Type 3 Intestinal Failure. These studies focused on symptoms and functional limitations resulting from the treatment. The aim of this study was to determine how dependence on HPN affects individuals' ability to fulfil their human needs. METHODS: Unstructured qualitative interviews were conducted with people dependent on HPN, who were asked to explain how their lives were affected by the treatment. Theoretical thematic analysis was conducted on the interview transcripts to identify statements describing aspects of human needs that were left unfulfilled. Care was taken to separate the impact of HPN from that of the underlying disease. RESULTS: Interviews were conducted with 30 patients (53% female; mean age, 55.9 (range 35-76) years). Most of the sample (87%) had short bowel syndrome. Major aspects of need affected by HPN were related to: autonomy, cognition, relationships, role fulfilment, socialisation, appearance and self-esteem, appetite and perceived vulnerability. CONCLUSIONS: The study illustrates how patients' lives are affected by HPN. Statements generated from this qualitative study were used to produce the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric measure of quality of life specific to people using HPN.
BACKGROUND & AIMS: Several studies have been published reporting on the impact of Home Parenteral Nutrition (HPN) on the lives of people with Type 3 Intestinal Failure. These studies focused on symptoms and functional limitations resulting from the treatment. The aim of this study was to determine how dependence on HPN affects individuals' ability to fulfil their human needs. METHODS: Unstructured qualitative interviews were conducted with people dependent on HPN, who were asked to explain how their lives were affected by the treatment. Theoretical thematic analysis was conducted on the interview transcripts to identify statements describing aspects of human needs that were left unfulfilled. Care was taken to separate the impact of HPN from that of the underlying disease. RESULTS: Interviews were conducted with 30 patients (53% female; mean age, 55.9 (range 35-76) years). Most of the sample (87%) had short bowel syndrome. Major aspects of need affected by HPN were related to: autonomy, cognition, relationships, role fulfilment, socialisation, appearance and self-esteem, appetite and perceived vulnerability. CONCLUSIONS: The study illustrates how patients' lives are affected by HPN. Statements generated from this qualitative study were used to produce the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric measure of quality of life specific to people using HPN.
Authors: Maja Kopczynska; Gordon Carlson; Antje Teubner; Arun Abraham; Michael Taylor; Sorrel T Burden; Christian L Hvas; Peter Jepsen; Simon Lal Journal: Nutrients Date: 2022-03-30 Impact factor: 5.717
Authors: Anne Marie Sowerbutts; Simon Lal; Jana Sremanakova; Andrew R Clamp; Gordon C Jayson; Antje Teubner; Lisa Hardy; Chris Todd; Anne-Marie Raftery; Eileen Sutton; Robert D Morgan; Alexander J Vickers; Sorrel Burden Journal: BMC Palliat Care Date: 2019-12-29 Impact factor: 3.234