{"title":"The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: a qualitative exploration.","authors":"Blossom Bell, Katherine Swainston","doi":"10.1007/s11764-023-01399-w","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Method: </strong>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.</p><p><strong>Results: </strong>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'.</p><p><strong>Conclusions: </strong>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.</p><p><strong>Implications for cancer survivors: </strong>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.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1000,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11424666/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Cancer Survivorship","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11764-023-01399-w","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/5/16 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Purpose: 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.
Method: 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.
Results: 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'.
Conclusions: 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.
Implications for cancer survivors: 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.
期刊介绍:
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.