Observational studyBMJ open2019
Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands.
Observational study in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
13 citing papers in PubMed, 22 citations in OpenAlex.
- Article
- Enhancing nurses' communication about psychosocial needs and changes in intimacy and sexuality in patients with advanced cancer: a mixed-method study.International journal of nursing studies advances · 2025Article
- Getting back on track after treatment of cancer: A qualitative interview study of cancer survivors' experiences.PloS one · 2025Article
- Application of a revised model for coping with advanced cancer to qualitatively explore lung cancer survivors' experiences of ongoing physical effects, novel treatments, uncertainty, and coping.Journal of cancer survivorship : research and practice · 2024Article
- "There is a life before and after cancer": experiences of resuming life and unmet care needs in stage I and II melanoma survivors.Archives of dermatological research · 2024Article
- Setting the Stage for Cancer: Stay Soft and Optimistic.The Yale journal of biology and medicine · 2024Review
- Determining the destination: a co-designed chronic advanced cancer rehabilitation conceptual framework for engagement of individuals with lived experience in rehabilitation research.Research involvement and engagement · 2024Article
- Illness trajectories of incurable solid cancers.BMJ (Clinical research ed.) · 2024Article
- Clinicians' experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands.Primary health care research & development · 2023Article
- Friendship during patients' stable and unstable phases of incurable cancer: a qualitative interview study.BMJ open · 2022Article
- Experiences of resuming life after immunotherapy and associated survivorship care needs: a qualitative study among patients with metastatic melanoma.The British journal of dermatology · 2022Article
- Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives.Patient preference and adherence · 2021Review
- Humour and laughing in patients with prolonged incurable cancer: an ethnographic study in a comprehensive cancer centre.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAdvances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. In this disease phase, patients are aware of the incurable nature of cancer although they are not yet approaching the last phase of life. We explored the challenges for patients confronted with protracted incurable cancer.
designEthnographic study (2015-2017) based on conversations with patients, observations at a day-care unit and a selection of information from the medical records of patients who died during the study period.
settingThe day-care unit of a comprehensive cancer centre in the Netherlands.
participantsNineteen patients with stage IV breast cancer (in remission, >1 year after diagnosis) and 11 patients with stage IV lung-cancer (in remission, >6 months after diagnosis).
resultsIn patients who had died during the study period, the treatment response often fluctuated between stable, remission and progression throughout the course of the disease. Patients reported that this fluctuation could be overwhelming. However, as patients grew accustomed to having protracted incurable cancer, the distress associated with fluctuations (perceived in scan results) slowly faded. Patients reported that cancer became part of who they were. At the day-care unit, most patients talked about their disease in an optimistic or neutral way and expressed delight in life. They often expressed gratefulness for the possible prolongation of life, expressed hope and tried to stay optimistic. This was frequently reinforced by optimistic doctors and nurses. Relatives, however, could downplay such optimism. Moreover, some patients acknowledged that hope was qualified by their personal challenges regarding their disease.
conclusionsIn situations where tumours remained in remission or were stable for extended periods, patients grew accustomed to having cancer. At the day-care unit, medical professionals typically encouraged an attitude of being hopeful and optimistic, which could be downplayed by relatives. More research is warranted to explore this protracted disease phase and this optimistic view among healthcare professionals.
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