Tonje Lundeby, Asta Bye, Olav Eric Yri, Torunn Elin Wester, Nina Aass, Sjur Bjørnar Hanssen, Stein Kaasa, Marianne Jensen Hjermstad
{"title":"Living with brain metastases-A longitudinal qualitative study of patient experiences from time of diagnosis.","authors":"Tonje Lundeby, Asta Bye, Olav Eric Yri, Torunn Elin Wester, Nina Aass, Sjur Bjørnar Hanssen, Stein Kaasa, Marianne Jensen Hjermstad","doi":"10.1093/nop/npag019","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Brain metastases (BM) are prevalent intracranial neoplasms in adults, affecting 20%-40% of cancer patients. With improved systemic therapies and neuroimaging, the frequency of BM diagnoses is rising. Despite advancements and longer survival time, the prognosis remains poor, with survival rates ranging from 3 months to over a year, depending on the diagnosis. This qualitative study provides insight into the patients' needs, experiences, and perspectives upon BM diagnosis. The aim of the study was to explore how patients experience being diagnosed with BM, their care and follow-up, and how BM impacts their lives and concerns.</p><p><strong>Methods: </strong>A qualitative study using longitudinal semi-structured interviews with patients recently diagnosed with first-time BM. Participants were recruited from one Norwegian hospital, with interviews conducted at 3 intervals over 4 months. Inclusion criteria included age ≥18, verified BM diagnosis, and ability to consent and participate in interviews. Inductive thematic analyses were performed to identify overarching themes.</p><p><strong>Results: </strong>Twenty-two patients participated, with interviews revealing 4 themes: (1) BM as either an additional burden or more of the same, (2) trust in the healthcare system despite unmet needs, (3) distancing from illness, and (4) acceptance of and adjustment to symptom burden. Patients expressed varied emotional responses, practical challenges, and evolving information needs over time.</p><p><strong>Conclusion: </strong>Patients diagnosed with BM face multifaceted challenges. A patient-centered approach, emphasizing clear communication, symptom management, and tailored care, is essential. Understanding patient experiences can help healthcare providers offer personalized care. Continued research is needed to address the unique needs of this population and improve care practices.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 4","pages":"723-732"},"PeriodicalIF":2.5000,"publicationDate":"2026-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13365131/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuro-oncology practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/nop/npag019","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2026/8/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Background: Brain metastases (BM) are prevalent intracranial neoplasms in adults, affecting 20%-40% of cancer patients. With improved systemic therapies and neuroimaging, the frequency of BM diagnoses is rising. Despite advancements and longer survival time, the prognosis remains poor, with survival rates ranging from 3 months to over a year, depending on the diagnosis. This qualitative study provides insight into the patients' needs, experiences, and perspectives upon BM diagnosis. The aim of the study was to explore how patients experience being diagnosed with BM, their care and follow-up, and how BM impacts their lives and concerns.
Methods: A qualitative study using longitudinal semi-structured interviews with patients recently diagnosed with first-time BM. Participants were recruited from one Norwegian hospital, with interviews conducted at 3 intervals over 4 months. Inclusion criteria included age ≥18, verified BM diagnosis, and ability to consent and participate in interviews. Inductive thematic analyses were performed to identify overarching themes.
Results: Twenty-two patients participated, with interviews revealing 4 themes: (1) BM as either an additional burden or more of the same, (2) trust in the healthcare system despite unmet needs, (3) distancing from illness, and (4) acceptance of and adjustment to symptom burden. Patients expressed varied emotional responses, practical challenges, and evolving information needs over time.
Conclusion: Patients diagnosed with BM face multifaceted challenges. A patient-centered approach, emphasizing clear communication, symptom management, and tailored care, is essential. Understanding patient experiences can help healthcare providers offer personalized care. Continued research is needed to address the unique needs of this population and improve care practices.
期刊介绍：
Neuro-Oncology Practice focuses on the clinical aspects of the subspecialty for practicing clinicians and healthcare specialists from a variety of disciplines including physicians, nurses, physical/occupational therapists, neuropsychologists, and palliative care specialists, who have focused their careers on clinical patient care and who want to apply the latest treatment advances to their practice. These include: Applying new trial results to improve standards of patient care Translating scientific advances such as tumor molecular profiling and advanced imaging into clinical treatment decision making and personalized brain tumor therapies Raising awareness of basic, translational and clinical research in areas of symptom management, survivorship, neurocognitive function, end of life issues and caregiving
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
