Patients with incurable cancer as a separate group of survivors in the primary care setting

Buiting, Hilde; Bolt, Eva E.

doi:10.1002/cncr.32473

Cited by 2 publications

(5 citation statements)

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“…Defining the trajectory of patients living longer with incurable cancer Awareness of patients living longer with incurable cancer than the estimated period of one year (the recommended period for 'mainstream' palliative care) is the first step to improve care for these patients (Boyd et al 2019;Buiting and Bolt 2019;Schildmann et al 2020). Our study convincingly showed that even in those 8 months study period, a switch in mindset seemed to have arisen.…”

Section: Findings In Relation To Other Studiesmentioning

confidence: 61%

“…Awareness of patients living longer with incurable cancer than the estimated period of one year (the recommended period for ‘mainstream’ palliative care) is the first step to improve care for these patients (Boyd et al . 2019 ; Buiting and Bolt 2019 ; Schildmann et al . 2020 ).…”

Section: Discussionmentioning

confidence: 99%

“…Preventing reluctance of PCPs wanting to become involved, a clear role of both specialties need to be further explored. We previously reported that – at present – the role of PCPs taking care for patients living longer with incurable cancer is mostly limited to the psychosocial aspects of the decision-making process and treatment of common comorbidities (Buiting and Bolt 2019 ).…”

Section: Discussionmentioning

confidence: 99%

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Clinicians’ experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands

Buiting

Botman

Velden

et al. 2023

Prim Health Care Res Dev

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Aim: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). Background: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a ‘palliative care’ or a ‘survivorship/psychosocial care’ approach. It is unknown what happens in actual medical practice. Methods: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. Findings and conclusions: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients’ physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label ‘chronic’ can possibly assist patients to live their life in the best possible way.

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Section: Findings In Relation To Other Studiesmentioning

confidence: 61%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Clinicians’ experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands

Buiting

Botman

Velden

et al. 2023

Prim Health Care Res Dev

Self Cite

View full text Add to dashboard Cite

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“…Patients being unsure about their prognosis, balance in preparing themselves for their approaching death and having a desire to live their life such as before their diagnosis of cancer. 10 This disease phase therefore opens up new (unconscious and unmet) needs of patients and their close relatives in which social support, in the most broadest sense, could play an important role. The chronic nature of cancer thus may bring along challenges for friends also, since the disease trajectory is less clear and therefore may impact their relationship.…”

Section: Introductionmentioning

confidence: 99%

“…Although the label 'chronic' can be a relief for the patient, the differences across cancers bring along heated discussions among healthcare professionals. Patients being unsure about their prognosis, balance in preparing themselves for their approaching death and having a desire to live their life such as before their diagnosis of cancer 10. This disease phase therefore opens up new (unconscious and unmet) needs of patients and their close relatives in which social support, in the most broadest sense, could play an important role.…”

Section: Introductionmentioning

confidence: 99%

Friendship during patients’ stable and unstable phases of incurable cancer: a qualitative interview study

et al. 2022

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ObjectivesLittle is known about the added value of friendship during the care of intensive cancer disease trajectories. Friends, however, can play an important (caring-)role to increase their friends’ (mental) well-being. We explored the experiences and desires of friends while their ill friends were—most of the time—in a stable phase of incurable cancer.DesignQualitative study in the Netherlands based on 14 in-depth interviews with friends of patients living with incurable cancer. Interviews were performed at the home setting or the friend’s office. Data gathering was inspired by grounded theory and analysed with a thematic analysis.SettingThe home setting/friend’s office.ResultsFriends reported to experience difficulties in how and how often they wanted to approach their ill friends. They emphasised the ever-present knowledge of cancer inside their friends’ body as a ‘time bomb’. They seemed to balance between the wish to take care for their ill friend, having a good time and not knowing what their ill friend desired at specific times. Some friends felt burdened with or forced to provide more care than they could, although they acknowledged that this relationship provided space to reflect about their own life.ConclusionsFriends are constantly negotiating and renegotiating their relationship depending on the severity of the disease, transparency of patients about their illness, their previous experiences and personal circumstances in life. Although a decrease in friendship may impact a patient’s quality of life, friends also need to be protected against providing more care than they are willing or able to give. Healthcare professionals, being aware of this phenomenon, can assist in this.

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Patients with incurable cancer as a separate group of survivors in the primary care setting

Cited by 2 publications

References 5 publications

Clinicians’ experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands

Clinicians’ experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands

Friendship during patients’ stable and unstable phases of incurable cancer: a qualitative interview study

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