Survivors’ preferences for the organization and delivery of supportive care after treatment: An integrative review

Mayo, Samantha; Ajaj, Rand; Drury, Amanda

doi:10.1016/j.ejon.2021.102040

Cited by 18 publications

(11 citation statements)

References 104 publications

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“…Concerns that follow‐up care varies among treatment centres has previously been identified by patients of multiple cancer types [10,13]. While some studies have found that patients wanted a more ‘flexible’ or ‘holistic’ approach to follow‐up care [15,17], this was not reflected in the views of the participants in our study, who were more concerned that practices and information should be standardized.…”

Section: Discussionmentioning

confidence: 70%

Patient experience of follow‐up after surgery for kidney cancer: a focus group study

2023

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To explore patient experience of follow-up care after kidney cancer surgery and to develop recommendations for best practice. MethodsWe conducted two focus groups, including 14 participants with experience of kidney cancer follow-up after surgery, to elicit patient views on current follow-up care. Thematic analysis was used to identify unifying themes to describe the patient experience of follow-up, and the results were then used to develop a set of recommendations for best practice. ResultsWe identified six themes (feelings of abandonment; uncertainty about the plan; anxiety about appointments; variation in care; a need for information; and a need for emotional support) that described current patient experience and areas in which current care could be improved. In particular, while most of the participants felt that their physical needs had been met, many had struggled with unmet emotional needs and a lack of information and resources. This was especially noted in the period immediately following surgery, when feelings of abandonment were common, and around follow-up scans and routine appointments, which were a source of anxiety. Our participants also described concerns about the lack of consistency between different hospitals and centres around the United Kingdom, with differences in the content and quality of follow-up care. Based on the results, we developed a list of recommendations to address some of the challenges described through relatively minor changes to the care pathway. ConclusionsWe identified gaps and variability in current follow-up care after kidney cancer surgery, and have developed a set of recommendations that, if implemented, would improve the follow-up care experience for these patients.

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Section: Discussionmentioning

confidence: 70%

Patient experience of follow‐up after surgery for kidney cancer: a focus group study

2023

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“…Survivors may feel uncertain about their fertility post‐treatment and available preservation strategies (i.e., egg harvesting, sperm banking) 80 . Being cognisant of survivors' preferences is essential in developing novel survivorship services to optimise engagement 81 . However, the current evidence on the fertility and sexual needs of lymphoma survivors is scarce, limiting the capacity to direct care and support systems for this group.…”

Section: Discussionmentioning

confidence: 99%

“…80 Being cognisant of survivors' preferences is essential in developing novel survivorship services to optimise engagement. 81 However, the current evidence on the fertility and sexual needs of lymphoma survivors is scarce, limiting the capacity to direct care and support systems for this group. There is minimal evidence of the spiritual needs of this population.…”

Section: Insufficient Provision Of Survivorship Informationmentioning

confidence: 99%

Living with or beyond lymphoma: A rapid review of the unmet needs of lymphoma survivors

Boland¹,

Drury²,

Sheaf

et al. 2022

Psycho-Oncology

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Objective: To establish an understanding of the unmet needs of people living with or beyond a lymphoma diagnosis. Survivors of lymphoma are at increased risk of unmet needs due to cancer, treatment-related toxicities and extended survivorship.Despite the rapidly growing numbers of lymphoma survivors, their needs and research priorities are underserved and undervalued, therefore left largely unaddressed.Methods: A rapid review method and reflexive thematic analysis approach assimilated current knowledge. Eligibility criteria included quantitative, qualitative, or mixed approaches employing cross-sectional, longitudinal, cohort or review designs focused on the needs of adult lymphoma survivors (any subtype or stage of disease).Five databases: CINAHL, EMBASE, Medline, PsycInfo and Scopus, were systematically searched.Results: Forty-seven studies met the inclusion criteria via a stringent screening process facilitated by NVivo. Almost 60 per cent of articles were published within the last five years and investigated a homogenous lymphoma sample. Most studies employed quantitative approaches (77%) and cross-sectional designs (67%). Studies were of high methodological quality. Five major themes were identified: disparity in health service delivery, the psychological impact of cancer, impactful and debilitating concerns, the monetary cost of survival and insufficient provision of survivorship information. A meta-analytical approach was not feasible due to the breadth of methodologies of included studies. Conclusions:This review shows that lymphoma survivors experience a myriad of unmet needs across multiple domains, reinforcing the need for lymphoma-specific research. However, more research is needed to advance and achieve informed decision-making relating to survivorship care, placing due attention to the needs and research priorities of lymphoma survivors.

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“…Reorganizing this routine demands close collaboration between primary and secondary care providers, and it asks for change in the behavior of patients, clinicians, and in the organization of care [9]. To date, most studies have focused on cancer survivors' preferences for cancer follow-up care [10][11][12][13] and general practitioners' (GPs) willingness to provide cancer follow-up care [14][15][16]. Since most of these studies were conducted in a setting where specialist-based follow-up was current practice, it is important to investigate primary care-based follow-up in a setting where patients and clinicians actually have the opportunity to experience primary care-based care as well.…”

Section: Introductionmentioning

confidence: 99%

Specialist versus Primary Care Prostate Cancer Follow-Up: A Process Evaluation of a Randomized Controlled Trial

Wollersheim

Asselt

Pos

et al. 2022

Cancers

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Background: A randomized controlled trial (RCT) is currently comparing the effectiveness of specialist- versus primary care-based prostate cancer follow-up. This process evaluation assesses the reach and identified constructs for the implementation of primary care-based follow-up. Methods: A mixed-methods approach is used to assess the reach and the implementation through the Consolidated Framework for Implementation Research. We use quantitative data to evaluate the reach of the RCT and qualitative data (interviews) to indicate the perspectives of patients (n = 15), general practitioners (GPs) (n = 10), and specialists (n = 8). Thematic analysis is used to analyze the interview transcripts. Results: In total, we reached 402 (67%) patients from 12 hospitals and randomized them to specialist- (n = 201) or to primary care-based (n = 201) follow-up. From the interviews, we identify several advantages of primary care- versus specialist-based follow-up: it is closer to home, more accessible, and the relationship is more personal. Nevertheless, participants also identified challenges: guidelines should be implemented, communication and collaboration between primary and secondary care should be improved, quality indicators should be collected, and GPs should be compensated. Conclusion: Within an RCT context, 402 (67%) patients and their GPs were willing to receive/provide primary care-based follow-up. If the RCT shows that primary care is equally as effective as specialist-based follow-up, the challenges identified in this study need to be addressed to enable a smooth transition of prostate cancer follow-up to primary care.

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Survivors’ preferences for the organization and delivery of supportive care after treatment: An integrative review

Cited by 18 publications

References 104 publications

Patient experience of follow‐up after surgery for kidney cancer: a focus group study

Patient experience of follow‐up after surgery for kidney cancer: a focus group study

Living with or beyond lymphoma: A rapid review of the unmet needs of lymphoma survivors

Specialist versus Primary Care Prostate Cancer Follow-Up: A Process Evaluation of a Randomized Controlled Trial

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