Amber Daniëlle Zegers, Pieter Coenen, Amy Heeren, Nadia Takke, Hilko Ardon, Annette Compter, Desiree Dona, Mathilde Kouwenhoven, Sanne B Schagen, Filip de Vos, Saskia F A Duijts
{"title":"恶性胶质瘤患者和相关专业人员的工作相关经历和未满足的需求：BrainWork研究。","authors":"Amber Daniëlle Zegers, Pieter Coenen, Amy Heeren, Nadia Takke, Hilko Ardon, Annette Compter, Desiree Dona, Mathilde Kouwenhoven, Sanne B Schagen, Filip de Vos, Saskia F A Duijts","doi":"10.1007/s11764-023-01469-z","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Many patients with a malignant (i.e., grade II-IV) glioma are of working age, yet they are rarely included in \"cancer and work\" studies. Here, we explored (1) the work-related experiences and unmet needs of patients with a malignant glioma and (2) the experiences and needs of relevant healthcare and occupational (health) professionals (\"professionals\") in providing work-related support to this patient group.</p><p><strong>Methods: </strong>Individual semi-structured interviews were held with patients with a malignant glioma who were of working age and had an employment contract at diagnosis, and relevant professionals. Interviews were transcribed verbatim and analysed thematically.</p><p><strong>Results: </strong>Patients (n = 22) were on average 46 ± 13 years of age (64% male) and diagnosed with a grade II (n = 12), III (n = 4), or IV glioma (n = 6). Professionals (n = 16) had on average 15 ± 9 years of relevant work experience with the patient group. Four themes emerged from the data: (1) having a malignant glioma: experienced consequences on work ability, (2) communicating about the consequences of a malignant glioma at work, (3) distilling the right approach: generic or tailored work-related support, and (4) accessibility of work-related support.</p><p><strong>Conclusions: </strong>Glioma-specific consequences on patients' work ability necessitate better communication between, and tailored guidance for, patients, relevant professionals, and the workplace. Suggestions for improvement, e.g., the periodic use of comprehensive neuropsychological assessments, are provided in the article.</p><p><strong>Implications for cancer survivors: </strong>Patients with a malignant glioma would benefit from tailored and proactive outreach about work-related issues bv relevant professionals.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"326-338"},"PeriodicalIF":3.1000,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11814035/pdf/","citationCount":"0","resultStr":"{\"title\":\"Work-related experiences and unmet needs of patients with a malignant glioma and relevant professionals: the BrainWork study.\",\"authors\":\"Amber Daniëlle Zegers, Pieter Coenen, Amy Heeren, Nadia Takke, Hilko Ardon, Annette Compter, Desiree Dona, Mathilde Kouwenhoven, Sanne B Schagen, Filip de Vos, Saskia F A Duijts\",\"doi\":\"10.1007/s11764-023-01469-z\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>Many patients with a malignant (i.e., grade II-IV) glioma are of working age, yet they are rarely included in \\\"cancer and work\\\" studies. Here, we explored (1) the work-related experiences and unmet needs of patients with a malignant glioma and (2) the experiences and needs of relevant healthcare and occupational (health) professionals (\\\"professionals\\\") in providing work-related support to this patient group.</p><p><strong>Methods: </strong>Individual semi-structured interviews were held with patients with a malignant glioma who were of working age and had an employment contract at diagnosis, and relevant professionals. Interviews were transcribed verbatim and analysed thematically.</p><p><strong>Results: </strong>Patients (n = 22) were on average 46 ± 13 years of age (64% male) and diagnosed with a grade II (n = 12), III (n = 4), or IV glioma (n = 6). Professionals (n = 16) had on average 15 ± 9 years of relevant work experience with the patient group. Four themes emerged from the data: (1) having a malignant glioma: experienced consequences on work ability, (2) communicating about the consequences of a malignant glioma at work, (3) distilling the right approach: generic or tailored work-related support, and (4) accessibility of work-related support.</p><p><strong>Conclusions: </strong>Glioma-specific consequences on patients' work ability necessitate better communication between, and tailored guidance for, patients, relevant professionals, and the workplace. Suggestions for improvement, e.g., the periodic use of comprehensive neuropsychological assessments, are provided in the article.</p><p><strong>Implications for cancer survivors: </strong>Patients with a malignant glioma would benefit from tailored and proactive outreach about work-related issues bv relevant professionals.</p>\",\"PeriodicalId\":15284,\"journal\":{\"name\":\"Journal of Cancer Survivorship\",\"volume\":\" \",\"pages\":\"326-338\"},\"PeriodicalIF\":3.1000,\"publicationDate\":\"2025-02-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11814035/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Cancer Survivorship\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s11764-023-01469-z\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2023/10/2 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Cancer Survivorship","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11764-023-01469-z","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/10/2 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
Work-related experiences and unmet needs of patients with a malignant glioma and relevant professionals: the BrainWork study.
Purpose: Many patients with a malignant (i.e., grade II-IV) glioma are of working age, yet they are rarely included in "cancer and work" studies. Here, we explored (1) the work-related experiences and unmet needs of patients with a malignant glioma and (2) the experiences and needs of relevant healthcare and occupational (health) professionals ("professionals") in providing work-related support to this patient group.
Methods: Individual semi-structured interviews were held with patients with a malignant glioma who were of working age and had an employment contract at diagnosis, and relevant professionals. Interviews were transcribed verbatim and analysed thematically.
Results: Patients (n = 22) were on average 46 ± 13 years of age (64% male) and diagnosed with a grade II (n = 12), III (n = 4), or IV glioma (n = 6). Professionals (n = 16) had on average 15 ± 9 years of relevant work experience with the patient group. Four themes emerged from the data: (1) having a malignant glioma: experienced consequences on work ability, (2) communicating about the consequences of a malignant glioma at work, (3) distilling the right approach: generic or tailored work-related support, and (4) accessibility of work-related support.
Conclusions: Glioma-specific consequences on patients' work ability necessitate better communication between, and tailored guidance for, patients, relevant professionals, and the workplace. Suggestions for improvement, e.g., the periodic use of comprehensive neuropsychological assessments, are provided in the article.
Implications for cancer survivors: Patients with a malignant glioma would benefit from tailored and proactive outreach about work-related issues bv relevant professionals.
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.
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