{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T07:59:51Z","timestamp":1793087991777,"version":"4.5.0"},"reference-count":20,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2022,11,25]],"date-time":"2022-11-25T00:00:00Z","timestamp":1669334400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Northern Alliance Advanced Therapies Treatment Centre"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2023,2]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients ( n\u2009=\u200910) and family caregivers ( n\u2009=\u20094). Thematic analysis was underpinned by a constructivist approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting\/participants:<\/jats:title>\n                    <jats:p>All patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one\u2009month after infusion and follow-up post-treatment (5\u201318\u2009months).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Identified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist \u2013 an expert, consistent point of contact \u2013 was essential.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/02692163221138880","type":"journal-article","created":{"date-parts":[[2022,11,26]],"date-time":"2022-11-26T00:43:14Z","timestamp":1669423394000},"page":"215-220","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":31,"title":["A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams"],"prefix":"10.1177","volume":"37","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2009-3238","authenticated-orcid":false,"given":"Charlotte L","family":"Stenson","sequence":"first","affiliation":[{"name":"Population Health Sciences Institute, Faculty of Medical Sciences, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Vidrine","sequence":"additional","affiliation":[{"name":"Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9648-5329","authenticated-orcid":false,"given":"Felicity","family":"Dewhurst","sequence":"additional","affiliation":[{"name":"Population Health Sciences Institute, Faculty of Medical Sciences, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK"},{"name":"St Oswald\u2019s Hospice, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy","family":"Osborne","sequence":"additional","affiliation":[{"name":"Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tobias","family":"Menne","sequence":"additional","affiliation":[{"name":"Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8189-2746","authenticated-orcid":false,"given":"Rachel","family":"Stocker","sequence":"additional","affiliation":[{"name":"School of Biomedical, Nutritional and Sport Sciences, Faculty of Medical Sciences, Dame Margaret Barbour Building, Newcastle University, Newcastle upon Tyne, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2022,11,25]]},"reference":[{"key":"bibr1-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1177\/0269216320954621"},{"key":"bibr2-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2017-03-769620"},{"key":"bibr3-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1707447"},{"key":"bibr4-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1804980"},{"key":"bibr5-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.15644"},{"key":"bibr6-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1177\/0269216320916154"},{"key":"bibr7-02692163221138880","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2014.57.9334"},{"key":"bibr8-02692163221138880","unstructured":"US Department of Health and Human Services Food and Drug Administration. 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