Fear of cancer recurrence: A qualitative systematic review and meta-synthesis of patients' experiences

Almeida, Susana N.; Elliott, Robert; Silva, Eunice R.; Sales, Célia

doi:10.1016/j.cpr.2018.12.001

Cited by 77 publications

(86 citation statements)

References 81 publications

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“…In the oncology setting, fear of cancer recurrence is widely acknowledged to interfere with health behaviours. For some, the fear of illness may drive unnecessary or excessive engagement with health services while for others, fear may serve to delay seeking care when needed [58, 59]. In our study, carers reported worries that their loved one with SMA at times underestimated their symptoms or tried to ignore indications of declining function.…”

Section: Discussionmentioning

confidence: 85%

“Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being

Wan

Carey

D’Silva

et al. 2019

Orphanet J Rare Dis

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Background Spinal muscular atrophy (SMA) has profound implications across a lifetime for people with the condition and their families. Those affected need long-term multidisciplinary medical and supportive care to maintain functional mobility, independence and quality of life. Little is known about how adults with SMA experience healthcare, or the components of care perceived as important in promoting well-being. The purpose of this study was to use qualitative research methodology to explore the lived experiences of healthcare and wellbeing of adults with SMA. Purposive sampling was used to recruit adolescents and adults with SMA, their parents and partners. Face-to-face or telephone-based semi-structured interviews were recorded and analysed using inductive thematic analysis. Results Across a total of 25 interviews (19 people with SMA, 5 parents, 1 partner) many participants described disengagement from health services and major gaps in care throughout adulthood. Disengagement was attributed to the perceived low value of care, as well as pragmatic, financial and social barriers to navigating the complex healthcare system and accessing disability services. Adults with SMA valued healthcare services that set collaborative goals, and resources with a positive impact on their quality of life. Mental health care was highlighted as a major unmet need, particularly during times of fear and frustration in response to loss of function, social isolation, stigma, and questions of self-worth. Alongside this, participants reported resilience and pride in their coping approaches, particularly when supported by informal networks of family, friends and peers with SMA. Conclusions These findings provide insight into the lived experiences, values and perspectives of adults with SMA and their carers, revealing major, ongoing unmet healthcare needs, despite many realising meaningful and productive lives. Findings indicate the necessity of accessible, patient- and family-centered multidisciplinary care clinics that address currently unmet physical and mental health needs. Understanding the lived experiences of people with SMA, particularly during times of transition, is critical to advancing health policy, practice and research. Future studies are needed to quantify the prevalence, burden and impact of mental health needs whilst also exploring potential supportive and therapeutic strategies. Electronic supplementary material The online version of this article (10.1186/s13023-019-1052-2) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 85%

“Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being

Wan

Carey

D’Silva

et al. 2019

Orphanet J Rare Dis

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“…Cancer is one of the major noncommunicable chronic diseases that seriously affect human health (1)(2)(3). Although treatment methods and drug research and development continue to improve, many problems such as drug resistance and recurrence still hinder progress (4)(5)(6)(7)(8)(9). The treatment of malignant tumors encompasses multidisciplinary comprehensive diagnosis and treatment (10)(11)(12) and reasonable combination and arrangement of multiple treatment methods including surgery, radiotherapy, chemotherapy, targeted therapy, immunotherapy, endocrine therapy, interventional therapy (13)(14)(15)(16)(17)(18)(19).…”

Section: Introductionmentioning

confidence: 99%

Research Status and Molecular Mechanism of the Traditional Chinese Medicine and Antitumor Therapy Combined Strategy Based on Tumor Microenvironment

Zhang

Lou

Wang³

et al. 2021

Front. Immunol.

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Treatment of malignant tumors encompasses multidisciplinary comprehensive diagnosis and treatment and reasonable combination and arrangement of multidisciplinary treatment, which is not a simple superimposition of multiple treatment methods, but a comprehensive consideration of the characteristics and specific conditions of the patients and the tumor. The mechanism of tumor elimination by restoring the body’s immune ability is consistent with the concept of “nourishing positive accumulation and eliminating cancer by itself” in traditional Chinese medicine (TCM). The formation and dynamic changes in the tumor microenvironment (TME) involve many different types of cells and multiple signaling pathways. Those changes are similar to the multitarget and bidirectional regulation of immunity by TCM. Discussing the relationship and mutual influence of TCM and antitumor therapy on the TME is a current research hotspot. TCM has been applied in the treatment of more than 70% of cancer patients in China. Data have shown that TCM can significantly enhance the sensitivity to chemotherapeutic drugs, enhance tumor-suppressing effects, and significantly improve cancer-related fatigue, bone marrow suppression, and other adverse reactions. TCM treatments include the application of Chinese medicine monomers, extracts, classic traditional compound prescriptions, listed compound drugs, self-made compound prescriptions, as well as acupuncture and moxibustion. Studies have shown that the TCM functional mechanism related to the positive regulation of cytotoxic T cells, natural killer cells, dendritic cells, and interleukin-12, while negatively regulating of regulatory T cells, tumor-associated macrophages, myeloid-derived suppressive cells, PD-1/PD-L1, and other immune regulatory factors. However, the application of TCM in cancer therapy needs further study and confirmation. This article summarizes the existing research on the molecular mechanism of TCM regulation of the TME and provides a theoretical basis for further screening of the predominant population. Moreover, it predicts the effects of the combination of TCM and antitumor therapy and proposes further developments in clinical practice to optimize the combined strategy.

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“…While some work has been previously done exploring predictors of FCR, summarised in systematic reviews such as by Simard et al, these have been primarily demographic or disease related. Previous research regarding psychological, social, or environmental predictors, has mostly been qualitative, although complementary quantitative research in this area is increasing. Smith et al recently explored the role of metacognitions and cognitive style in relation to FCR, finding that psychological factors (ie, more intrusive thoughts and negative beliefs about worry) play an important role in FCR morbidity after controlling for demographic/medical factors.…”

Section: Discussionmentioning

confidence: 99%

A research agenda for fear of cancer recurrence: A Delphi study conducted in Australia

et al. 2019

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Objective: Fear of cancer recurrence (FCR) is common, debilitating, and costly to the health system. While there has been a rising trajectory in FCR-related research, there remain many unanswered questions. A research agenda is required to clarify priorities and ensure that research dollars and effort are expended wisely. This study aimed to elicit research topics and priorities from clinical and academic experts in FCR.Methods: Phase 1 consisted of elicitation by survey of prioritised FCR research topics from 20 members of the Psycho-Oncology Co-operative Research Group (PoCoG) FCR special interest group, followed by a focus group discussion with 28 clinicians, researchers, and cancer survivors, at which survey results were presented and further reflection was encouraged. This resulted in 28 research topics that were then subjected to a Delphi process to establish consensus (phase 2).Results: Thirty-one participants completed round 1 of the Delphi process and 23 round 2, after which satisfactory consensus was reached. Five broad areas of research were identified as priorities. In rank order, they were (1) intervention models; (2) definition, predictors, and outcomes of FCR; (3) detection and screening;(4) training for health professionals; and (5) reaching specific populations.Conclusions: It is hoped that the current findings will guide FCR researchers towards clinically relevant, significant research that will move the field forward.Experts nominated intervention research as the top priority, specifically exploring optimal formats of delivery including stepped care and blended models incorporating online or phone elements to increase accessibility. KEYWORDS cancer, Delphi method, fear of cancer recurrence, oncology, research priorities 1 | INTRODUCTION Fear of cancer recurrence (FCR), defined as "fear, worry or concernrelating to the possibility that cancer will come back or progress," 1(p3266) is pervasive among cancer survivors. While some degree of FCR among cancer survivors is considered normal, 1 approximately 50% experience moderate to high FCR levels. 2 High FCR does not appear to diminish over time and is associated with greater psychological distress, impaired quality of life, and increased health care utilisation. 2 While FCR overlaps with other forms of psychological distress, FCR is often an isolated focus of worry in otherwise mentally well individuals. 3 Up to 79% of survivors report an unmet need for

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Fear of cancer recurrence: A qualitative systematic review and meta-synthesis of patients' experiences

Cited by 77 publications

References 81 publications

“Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being

“Getting ready for the adult world”: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being

Research Status and Molecular Mechanism of the Traditional Chinese Medicine and Antitumor Therapy Combined Strategy Based on Tumor Microenvironment

A research agenda for fear of cancer recurrence: A Delphi study conducted in Australia

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