Rhoads Research Lecture—Reflections from a clinician scientist: The power of patient voice

• Published in: JPEN. Journal of parenteral and enteral nutrition 2022-11, Vol.46 (8), p.1751-1760
• Main Author: Winkler, Marion
• Format: Article
• Language: English
• Subjects: home parenteral nutrition; Humans; Parenteral Nutrition, Home - adverse effects; Physicians; Qualitative Research; Quality of Life; Surveys and Questionnaires
• ISSN: 0148-6071; 1941-2444
• DOI: 10.1002/jpen.2433

Qualitative research is a scientific method that systematically examines a phenomenon with the purpose of understanding and describing human experiences, exploring meanings and patterns, and illuminating the patient's lived experience. The Rhoads Research Lecture will highlight the power of patient voice and its importance to clinicians and researchers in addressing key clinical needs that are most relevant to patients receiving nutrition support. The subjective experience of patients who are dependent on home parenteral nutrition (HPN) will be shared, including how patients view HPN, define their quality of life (QOL), and describe the meaning of food in the context of being intravenously fed. As a result of these exploratory studies, the HPN patient‐reported outcome questionnaire (HPN‐PROQ) was developed and validated. Incorporating the HPN‐PROQ in practice empowers patients to identify and communicate QOL and HPN therapy goals and clinicians to delve deeper in the provision of holistic and empathetic care.