The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: a qualitative exploration.

Late effects Long-term monitoring Patients’ experiences Stem cell transplant

Journal

Journal of cancer survivorship : research and practice

ISSN: 1932-2267

Titre abrégé: J Cancer Surviv

Pays: United States

ID NLM: 101307557

Informations de publication

Date de publication:
16 May 2023

Historique:

received: 30 01 2023

accepted: 04 05 2023

medline: 16 5 2023

pubmed: 16 5 2023

entrez: 15 5 2023

Statut: aheadofprint

Résumé

Despite a haematopoietic stem cell transplant (HSCT) being a potentially curative treatment option for malignant and non-malignant disorders, patients may develop complex physical and psychological post-transplant complications. Consequently, transplant centres remain responsible for patients' life-long monitoring and screening practices. We sought to describe how HSCT survivors experience long-term follow-up (LTFU) monitoring clinics in England. A qualitative approach was adopted with data collected from written accounts. Seventeen transplant recipients were recruited from across England, and the data was analysed using thematic analysis. Data analysis elicited four themes: Transfer to LTFU care: 'will there be a change in my care, or will appointments just become less frequent?'; Care Coordination: 'it is good to know I am still in the system'; Relationship continuity: 'a good knowledge of me, my health and what is important to me'; and Late-effects Screening: 'there was not much information about what to expect or be aware of'. HSCT survivors in England experience uncertainty and lack of information regarding the transfer from acute to long-term care and clinic screening practices. However, patients gain reassurance from remaining on a healthcare pathway and maintaining relationships with healthcare professionals. HSCT recipients entering LTFU monitoring clinics are a growing population of cancer survivors. Understanding and acknowledging this cohort of patients' needs may inform the development of tailored support to help patients navigate the complicated healthcare pathway.

Identifiants

DOI: 10.1007/s11764-023-01399-w PMID: 37189002

pubmed: 37189002

doi: 10.1007/s11764-023-01399-w

pii: 10.1007/s11764-023-01399-w

doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

Informations de copyright

Références

Majhail NS, Farnia SH, Carpenter PA, Champlin RE, Crawford S, Marks DI, Omel JL, Orchard PJ, Palmer J, Saber W, Savani BN, Veys PA, Bredeson CN, Giralt SA, LeMaistre CF. Indications for autologous and allogeneic hematopoietic cell transplantation: guidelines from the American Society for Blood and Marrow Transplantation. Biol Blood Marrow Transplant. 2015. https://doi.org/10.1016/j.bbmt.2015.07.032 .

doi: 10.1016/j.bbmt.2015.07.032 pubmed: 26493563 pmcid: 5030817

Hatzimichael E, Tuthill M. Hematopoietic stem cell transplantation. Stem Cells Cloning: Adv Appl. 2010. https://doi.org/10.2147/SCCAA.S6815 .

doi: 10.2147/SCCAA.S6815

Passweg JR, Baldomero H, Chabannon C, Basak GW, de la Cámara R, Corbacioglu S, Dolstra H, Duarte R, Glass B, Greco R, Lankester AC, Mohty M, Peffault de Latour R, Snowden JA, Yakoub-Agha I, Kröger N, European Society for Blood and Marrow Transplantation (EBMT). Hematopoietic cell transplantation and cellular therapy survey of the EBMT: monitoring of activities and trends over 30 years. Bone Marrow Transplant. 2021. https://doi.org/10.1038/s41409-021-01227-8 .

doi: 10.1038/s41409-021-01227-8 pubmed: 34775480 pmcid: 8821015

British Society of Blood and Marrow Transplantation and Cellular Therapy. UK & ROI Transplant Activity Table by Disease. In: Annual activity. British Society of Blood and Marrow Transplantation and Cellular Therapy. 2020. https://bsbmtct.org/activity/2020/ . Accessed 28 Oct 2022.

Maziarz RT. Overview of hematopoietic cell transplantation and cellular therapy. In: Maziarz RT, Slater SS, editors. Blood and marrow transplant handbook; comprehensive guide for patient care. 3rd ed. Switzerland: Springer Nature; 2021. p. 1–10.

doi: 10.1007/978-3-030-53626-8

Penack O, Peczynski C, Mohty M, Yakoub-Agha I, Styczynski J, Montoto S, Duarte RF, Kröger N, Schoemans H, Koenecke C, Peric Z, Basak GW. How much has allogeneic stem cell transplant-related mortality improved since the 1980s? A retrospective analysis from the EBMT. Blood Adv. 2020. https://doi.org/10.1182/bloodadvances.2020003418 .

doi: 10.1182/bloodadvances.2020003418 pubmed: 33351121 pmcid: 7756984

Atsuta Y, Hirakawa A, Nakasone H, Kurosawa S, Oshima K, Sakai R, Ohashi K, Takahashi S, Mori T, Ozawa Y, Fukuda T, Kanamori H, Morishima Y, Kato K, Yabe H, Sakamaki H, Taniguchi S, Yamashita T. Late mortality and causes of death among long-term survivors after allogeneic stem cell transplantation. Biol Blood Marrow Transplant. 2016; https://doi.org/10.1016/j.bbmt.2016.05.019 .

Styczyński J, Tridello G, Koster L, Iacobelli S, van Biezen A, van der Werf S, Mikulska M, Gil L, Cordonnier C, Ljungman P, Averbuch D, Cesaro S, de la Camara R, Baldomero H, Bader P, Basak G, Bonini C, Duarte R, Dufour C, Kuball J, Lankester A, Montoto S, Nagler A, Snowden JA, Kröger N, Mohty M, Gratwohl A, Infectious Diseases Working Party EBMT. Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors. Bone Marrow Transplant. 2020. https://doi.org/10.1038/s41409-019-0624-z .

doi: 10.1038/s41409-019-0624-z pubmed: 33288863 pmcid: 7278762

Majhail NS. Long-term complications after hematopoietic cell transplantation. Hematol Oncol Stem Cell Ther. 2017. https://doi.org/10.1016/j.hemonc.2017.05.009 .

doi: 10.1016/j.hemonc.2017.05.009 pubmed: 28641097 pmcid: 5925745

Slater SS, Hansen LK. Long-term follow-up and survivorship. In: Maziarz RT, Slater SS, editors. Blood and marrow transplant handbook; comprehensive guide for patient care. 3rd ed. Switzerland: Springer Nature; 2021. p. 807–28.

doi: 10.1007/978-3-030-53626-8_51

National Health Service England Specialised Services Clinical Reference Group for Blood and Marrow Transplantation. Clinical commissioning policy: haematopoietic stem cell transplantation (HSCT) (all ages) (NHS England B04/P/a). In: Blood and marrow transplantation. NHS England. 2021. https://www.england.nhs.uk/wp-content/uploads/2022/10/Haematopoietic-Stem-Cell-Transplantation-HSCT-All-Ages.pdf . Accessed 3 Nov 2022.

The Foundation for the Accreditation of Cellular Therapy and the Joint Accreditation Committee of the International Society for Cellular Therapy and the European Society for Blood and Marrow Transplantation. FACT-JACIE International Standards for Hematopoietic Cellular Therapy Product Collection, Processing, and Administration (7

Majhail NS, Rizzo JD, Lee SJ, Alijurf M, Atsuta Y, Bonfirm C, Burns LJ, Chaudhri N, Davies S, Okamoto S, Seber A, Socie G, Szer J, Van Lint MT, Wingard JR, Tichelli A. Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation. Bone Marrow Transplant. 2012. https://doi.org/10.1038/bmt.2012.5 .

doi: 10.1038/bmt.2012.5 pubmed: 23222378 pmcid: 3596484

Hashmi S, Carpenter P, Khera N, Tichelli A, Savani BN. Lost in transition: the essential need for long-term follow-up clinic for blood and marrow transplantation survivors. Biol Blood Marrow Transplant. 2015. https://doi.org/10.1016/j.bbmt.2014.06.035 .

doi: 10.1016/j.bbmt.2014.06.035 pubmed: 26524731

Giaccone L, Felicetti F, Butera S, Faraci D, Cerrano M, Dionisi Vici M, Brunello L, Fortunati N, Brignardello E, Bruno B. Optimal delivery of follow-up care after allogeneic hematopoietic stem-cell transplant: improving patient outcomes with a multidisciplinary approach. J Blood Med. 2020. https://doi.org/10.2147/JBM.S206027 .

doi: 10.2147/JBM.S206027 pubmed: 32523389 pmcid: 7237112

Hamblin A, Greenfield DM, Gilleece M, Salooja N, Kenyon M, Morris E, Glover N, Miller P, Braund H, Peniket A, Shaw BE, Snowden JA. Provision of long-term monitoring and late effects services following adult allogeneic haematopoietic stem cell transplant: a survey of UK NHS-based programmes. Bone Marrow Transplant. 2017. https://doi.org/10.1038/bmt.2017.67 .

doi: 10.1038/bmt.2017.67 pubmed: 28677683

Hashmi SK, Lee SJ, Savani BN, Burns L, Wingard JR, Perales MA, Palmer J, Chow E, Meyer E, Marks D, Mohty M, Inamoto Y, Rodriguez C, Nagler A, Sauter C, Komanduri KV, Pidala J, Hamadani M, Johnston L, Shah N, Shaughnessy P, Hamilton BK, Majhail N, Kharfan-Dabaja MA, Schriber J, DeFilipp Z, Tarlock KG, Fanning S, Curtin P, Rizzo JD, Carpenter PA. ASBMT practice guidelines committee survey on long-term follow-up clinics for hematopoietic cell transplant survivors. Biol Blood Marrow Transplant. 2018. https://doi.org/10.1016/j.bbmt.2018.03.023 .

Dignan FL, Hamblin A, Chong A, Lee J, Kenyon M, Miller P, Gilleece M, Hunter H, Snowden JA. Survivorship care for allogeneic transplant patients in the UK NHS: changes centre practice, impact of health service policy and JACIE accreditation over 5 years. Bone Marrow Transplant. 2021. https://doi.org/10.1038/s41409-020-01067-y .

doi: 10.1038/s41409-020-01067-y pubmed: 34446853

de Vere HI, Kilgour JM, Danby R, Peniket A, Matin RN. “Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service. Health Qual Life Outcomes. 2021. https://doi.org/10.1186/s12955-020-01651-2 .

doi: 10.1186/s12955-020-01651-2

Parisek M, Loss J, Holler E, Barata A, Weber D, Edinger M, Wolff D, Schoemans H, Herrmann A. “This graft-vs.-host disease determines my life. that’s it.”—a qualitative analysis of the experiences and needs of allogenic hematopoietic stem cells transplantation survivors in Germany. Front Public Health. 2021. https://doi.org/10.3389/fpubh.2021.687675 .

Sharin UBM, Hwang CCJ, Ang WHD, Lopez V. The haematopoietic stem cell transplant survivors’ sense of coherence about their experiences: a qualitative study. Support Care Cancer. 2020. https://doi.org/10.1007/s00520-019-05273-3 .

doi: 10.1007/s00520-019-05273-3 pubmed: 31900616

Van Manen M. Researching lived experiences: human science for an action sensitive pedagogy. New York, NY: State University of New York Press; 1990.

Braun V, Clarke V, Boulton E, Davey L, McEvoy C. The online survey as a qualitative research tool. Int J Soc Res Methodol. 2020. https://doi.org/10.1080/13645579.2020.1805550 .

doi: 10.1080/13645579.2020.1805550

Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. London: SAGE; 2013. p. 45–50.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006. https://doi.org/10.1191/1478088706qp063oa .

doi: 10.1191/1478088706qp063oa

Terry G, Hayfield N, Clarke V, Braun V. Thematic analysis. In: Willig C, Stainton-Rogers W, editors. The SAGE handbook of qualitative research in Psychology. London: SAGE; 2017. pp. 17–37.

The National Health Service. The NHS Long Term Plan. In: The NHS Long Term Plan. The National Health Service. 2019. https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf . Accessed 3 Nov 2022.

American Society of Clinical Oncology. ASCO Survivorship Care Plans. In: ASCOCancer Treatment and Survivorship Care Plans. n.d. https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans . Accessed 22 Apr 2023.

Benedict Hahn AL, Diefenbach MA, Ford JS. Recruitment via social media: advantages and potential biases. Digital Health. 2019. https://doi.org/10.1177/2055207619867223 .

doi: 10.1177/2055207619867223 pubmed: 31431827

Kenyon M, Murray J, Quinn B, Greenfield D, Trigoso E. Late effects and long-term follow-up. In: Kenyon M. Babic A, editors. The European blood and marrow transplantation textbook for nurses: under the auspices of EBMT. Switzerland: Springer Open; 2018. pp. 271–299.