Mama, Nikoletta;
Cucchiaro, Brittany;
Slee, Adrian;
(2023)
A Patient and Public Involvement (PPI) Review Exploring Patient Reported Outcome Measures in Adult CAR T-cell therapy Patients.
Clinical Nutrition Open Science
, 51
pp. 80-97.
10.1016/j.nutos.2023.08.008.
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Abstract
Background & Aims: Chimeric Antigen Receptor (CAR) T-cell therapy is a novel anti-cancer treatment option for patients with refractory or relapsed haematological malignancies. Preliminary research shows a significant proportion of patients receiving CAR T-cell therapy develop malnutrition and cachexia during treatment, with these nutritional issues associated with adverse patient outcomes. There is a lack of literature and no specific validated measures on patient experience and burden of symptoms for CAR T-cell therapy patients as well as the importance of clinical outcomes for these patients. Patient and public involvement (PPI) is a fundamental feature of proper research execution as it informs issues in the research that are most important in patients. The aim of this review was to identify priority patient-reported outcome measures in CAR T-cell therapy patients using PPI, in addition to exploring patient experiences, burden of symptoms, priorities, and knowledge of nutritional priorities in cancer. The PPI outcomes will also aid to inform the design and development of a future novel cohort study. Methods: Using participatory research (PPI), six adults aged 26e70 years who have received CAR T-cell therapy in the past two years, participated in one-to-one interviews. The interview questions were focused on the aims of identifying patient recommendations regarding clinical outcome measures of interest, their relevance to patient's experience of CAR T-cell therapy, and optimal design of the future cohort research protocol.
| Type: | Article |
|---|---|
| Title: | A Patient and Public Involvement (PPI) Review Exploring Patient Reported Outcome Measures in Adult CAR T-cell therapy Patients |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1016/j.nutos.2023.08.008 |
| Publisher version: | https://doi.org/10.1016/j.nutos.2023.08.008 |
| Language: | English |
| Additional information: | © 2023 The Author(s). Published by Elsevier Ltd on behalf of European Society for Clinical Nutrition and Metabolism. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
| Keywords: | Patient and public involvement CAR T-cell therapy Haematology Malnutrition Cancer cachexia |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10177375 |
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