Journal of Cancer Survivorship最新文献

Objectives: Taking an active role in managing post-treatment care has emerged as a key aspect of promoting a successful transition into survivorship and is associated with better patient outcomes. In this study, we focus on two key aspects of active self-management, activation and preparedness. Activation was defined as understanding one's role in the care process and having the knowledge, skill, and confidence to take on a role in managing self-care. Preparedness was defined as the extent to which individuals perceived they had sufficient information about what to expect after cancer treatments are completed. The study goal was to characterize survivorship preparedness and activation among lymphoma survivors within 5 years of treatment completion in New Jersey and examine the association of sociodemographic, medical, care transition experiences, practical concerns, and psychosocial factors with activation and preparedness.

Methods: One hundred and one Hodgkin lymphoma or non-Hodgkin lymphoma survivors who had completed treatment within 5 years completed a survey of survivorship care experiences (response rate = 34.12%).

Results: Approximately 60% of survivors reported high activation, with similar percentages for higher preparedness. Less activated survivors were significantly (p < .05) younger, married, resided in a more deprived geographic area, and reported more fatigue and information needs. Less activated survivors reported recalling that their providers were significantly (p < .05) less likely to discuss long-term side effects, psychosocial needs, risk-reducing lifestyle recommendations, and how to manage other medical concerns. Fewer care transition practices were most strongly associated with lower preparedness.

Conclusions: A significant proportion were not activated for survivorship, and both activation and preparedness were strongly associated with providers' survivorship transition practices.

Implications for cancer survivors: Implementing programs to foster more activation and preparedness for lymphoma survivorship care would benefit from education about recommended follow-up care and healthy lifestyle practices. Providers should routinely ask about their patients' confidence and preparedness for survivorship and provide referrals for appropriate care as needed.

Purpose: Androgen deprivation therapy (ADT) is a mainstay of treatment for prostate cancer (PCa) and is associated with increased risks of osteoporosis and fragility fractures. Despite international guidelines to mitigate fracture risk, osteoporosis is under-diagnosed and under-treated due to poor implementation. This scoping review aims to synthesise knowledge surrounding the implementation of guidelines to inform health service interventions to reduce fracture risk in men with PCa-taking ADT (PCa-ADT).

Method: Four databases and additional literature were searched for studies published between January 2000 and January 2023. Studies that provided evidence influencing guidelines implementation were included. The i-PARIHS (Promoting Action on Research Implementation in Health Services) implementation framework was used to inform the narrative synthesis.

Results: Of the 1229 studies identified, 9 studies met the inclusion criteria. Overall, an improvement in fracture risk assessment was observed across heterogeneous study designs and outcome measures. Six studies were from Canada. Two studies involved family physicians or a community healthcare programme. Two studies incorporated patient or specialist surveys. One utilised an implementation framework. Implementation barriers included the lack of knowledge for both patients and clinicians, time constraints, unsupportive organisational structures, and challenges in transferring patient care from specialists to primary care. Effective strategies included education, novel care pathways using a multidisciplinary approach, incorporating a healthy bone prescription tool into routine care, point-of-care interventions, and bespoke clinics.

Conclusion: There is an unmet need to provide evidence-based bone healthcare in men with PCa receiving ADT. This study highlights barriers and strategies in the implementation of fracture risk assessment for PCa-ADT patients.

Implications for cancer survivors: Primary care clinicians can play a significant role in the management of complications from long-term cancer treatment such as treatment-induced bone loss. Future studies should consult patients, families, specialists, and primary care clinicians in service re-design.

Purpose: Unhealthy lifestyle increases the risk of comorbidities, reduced quality of life, and cancer recurrence among breast cancer survivors. It is important to identify emotional and cognitive factors that may affect the maintenance of a healthy lifestyle over time. This study examined the associations of perceived lifestyle discrepancy, self-compassion, and emotional distress with the maintenance of a healthy lifestyle among breast cancer survivors and the mediating role of emotion regulation patterns (cognitive reappraisal and expressive suppression) in these associations.

Methods: A total of 145 female breast cancer survivors aged 31-77 completed self-reports on healthy lifestyle maintenance, perceived lifestyle discrepancy, self-compassion, emotional distress, and emotion regulation patterns. Structural equation modeling was used to analyze the data.

Results: Mean physical activity and healthy diet maintenance scores were moderate. The structural equation modeling analysis showed good fit indicators (χ2 = 4.21, df = 10, p = .94; χ2/df = 0.42; NFI = .98; TLI = 1.09; CFI = 1.00; RMSEA = .00, 95% CI (.00, .02)). Lower perceived lifestyle discrepancy was directly associated with higher physical activity (β = -.34, p < .01) and healthy diet (β =-.39, p < .01). Cognitive reappraisal was associated with higher physical activity (β = .19, p < .01), and expressive suppression was associated with lower physical activity (β = -.19, p < .01), and both mediated the association between self-compassion and physical activity.

Conclusions: The mediated associations reported in this study indicate that psychosocial factors, especially self-compassion, perceived lifestyle discrepancy, and emotional regulation patterns, are relevant to healthy lifestyle maintenance among breast cancer survivors, because solely providing healthy lifestyle recommendations does not motivate individuals to adhere to them.

Implications for cancer survivors: Short-term structured psychosocial interventions designed to reduce perceived health discrepancy and strengthen self-compassion should be implemented and their effect on lifestyle should be further evaluated.

Purpose: Multimorbidity is common in people with cancer and associated with increased complexity of care, symptoms, mortality, and costs. This study aimed to identify priorities for care and research for cancer survivors with multimorbidity.

Methods: A Delphi consensus process was conducted. Elements of care and research were based on Australia's National Strategic Framework for Chronic Conditions, a literature review, and expert input. In Round 1, health professionals, cancer survivors, and researchers rated the importance of 18 principles, 9 enablers, and 4 objectives. In Round 2, new elements were rated and all elements were ranked.

Results: In Round 1, all elements reached consensus for care delivery; three principles and one enabler did not reach consensus for research and were eliminated. One principle and two enablers were added, reaching consensus. In the final list, 19 principles, 10 enablers, and 4 objectives were included under care delivery; 14 principles, 9 enablers, and 4 objectives were included under research. For care delivery, principles of 'survivorship' and 'self-management' were ranked highest, and 'peer support' and 'technology' were the most important enablers. For research, 'survivorship' and 'coordinated care' were the highest-ranked principles, with 'peer support' and 'education' the most important enablers.

Conclusion: Most elements apply to the general population and cancer survivors; however, additional elements relevant to survivorship need consideration when managing multimorbidity in cancer survivors.

Implications for cancer survivors: Chronic disease frameworks should be more inclusive of issues prioritised by people with, managing, or researching cancer through interdisciplinary approaches including acute and primary care.

Purpose: Patient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients' experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format.

Methods: Cancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis.

Results: Twenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: "Understanding: I get the gist of it!"; "Usefulness: Tell me why I should complete PROMs"; "Format preferences: Numbers are cold, narratives are warm"; "Taking action: Can I do something about my score?"; "Personal relevance: Personalized narratives show me what life has in store for me"; and "Personal relevance: That's (not) me!" Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character.

Conclusion: Personalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition.

Implications for cancer survivors: Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.

Background: In the cancer context, exceptional response incorporates unusual or unexpected response to anti-cancer treatment. For this study, exceptionally 'good' responses are defined as progression-free survival of more than three times the median from comparable trials. We aimed to explore how people meeting the definition of exceptional response to systemic cancer treatment experience adjust to their unexpected survivorship.

Methods: Individuals with 'exceptional response' to anti-cancer therapy nationally were referred by their treating clinicians to the Exceptional Responders Program. We conducted a qualitative sub-study involving semi-structured interviews with purposively selected participants. Those eligible had metastatic cancer, had survived at least 3 times the expected time since diagnosis, spoke English, and were aged > 18 years. Interviews were audiorecorded, transcribed and analysed thematically; and continued until thematic saturation was achieved.

Results: Twenty participants were interviewed. Thirteen were male (65%) with a median age of 63 years. Median time since cancer diagnosis was 6.5 years (range 3-18); survival times ranged between 3 and 10 times that expected. We identified four themes which varied in importance between individuals and over time.

Conclusion: Exceptional responders may benefit from routine screening of distress and unmet needs to provide psychosocial support. Clinical services must focus on first capturing and then tailoring care to meet the diverse needs of this growing cohort.

Implications for cancer survivors: Adjustment to a diagnosis of advanced cancer and subsequent unexpected long-term survival is an often isolating experience and is common amongst exceptional responders. Seeking psychological and social support may assist with adjustment.

Purpose: Fear of cancer recurrence (FCR) is not routinely addressed in clinical practice, meaning many cancer survivors forego effective interventions. We established expert consensus on a clinical pathway to help health professionals identify and manage FCR in early-stage cancer survivors.

Methods: Australian health professionals and researchers working with adult cancer survivors participated in a three-round Delphi study promoted via oncology professional bodies and social media. The Round 1 online survey presented 38 items regarding FCR screening, triage, assessment, referral, and stepped care, based on a literature review, related pathways/guidelines, and expert input. Participants rated how representative of best-practice items were on a 5-point scale (strongly disagree-strongly agree), with optional qualitative feedback. Consensus was defined as ≥ 80% of participants strongly/agreeing with items. Items not reaching consensus were re-presented to Round 1 participants in two subsequent rounds with new items, derived from content analysis of qualitative feedback.

Results: From 94 participants in Round 1 (89% health professionals), 26/38 (68%) items reached consensus. By round 3, 35/38 (92%) items, including 8 new items, reached consensus. Routine FCR screening and triage conversations and stepped care management (i.e. tailored and staged treatment) were endorsed. However, the timing of FCR screening/triage did not reach consensus.

Conclusions: This world-first FCR clinical pathway incorporating contemporary evidence and expert opinion recommends routine screening and triage to stepped care management of FCR. Some pathway components, such as screening or triage timing, may need tailoring for different contexts.

Implications for cancer survivors: Implementation of the pathway could aid routine identification and management of FCR, reducing its burden on cancer survivors and the healthcare system.

Background: More than 60% of cancer survivors report unmet physical, psychosocial, and informational needs. The care of cancer survivors includes surveillance, health maintenance monitoring, referral for long-term adverse effects of cancer treatment, and coordination of care. Group medical visits (GMV) include medical care, education, and peer support and can be used to facilitate the delivery of multidisciplinary survivorship care. We aimed to characterize the current state of related research describing the role of GMV in cancer survivorship care.

Methods: For this scoping review, we searched for published literature using PubMed, Embase, and other resources. We included intervention studies of multidisciplinary care involving GMVs of adult patients with a history of cancer requiring the presence of medical personnel, physicians, advanced practitioners, or oncology nurses. We included studies that focused on broad cancer survivorship care, rather than those using specific modalities, such as yoga, or limited to specific aspects of cancer survivorship care, such as weight loss. We characterized the studies by cancer type, structure of GMVs, and reported outcomes.

Results: We identified 2311 studies (2122 from PubMed and 189 from Embase). We excluded 1524 duplicates and screened 787 studies for title and abstract review. Finally, 63 studies were retrieved for full-text review, and six were included in this scoping review. Of the included studies, four were non-randomized, and two were randomized. Breast cancer was the most common site (4); other studies included breast and other cancers (1) and hematopoietic transplant cancer survivors (1). There was heterogeneity in the structure and frequency of sessions and the survivorship domains addressed. The outcomes studied included quality of life, healthcare utilization, and costs.

Conclusions: Limited high-quality research exists on the role of GMV in cancer survivorship. Though shown to be effective in chronic disease, the evidence for the effectiveness of this important and widely used approach in multidisciplinary survivorship care remains inconsistent and preliminary; the literature to date provides a starting point for larger-scale studies of GMV in cancer survivorship care.

Implications for cancer survivors: While Group medical visits are a promising intervention to provide multidisciplinary care, larger studies are needed to support their benefit in the care of cancer survivors.

Purpose: This study aimed to examine the (age-specific) informational needs and support sources used by Adolescent and Young Adult (AYA) cancer survivors throughout their cancer trajectory and socio-demographic and clinical factors associated with most common AYA-related informational needs.

Methods: A cross-sectional questionnaire study was conducted among AYA cancer survivors (mean, 10.3 years after diagnosis, SD = 5.6). Informational needs and sources of support were examined via open questions and analyzed via a thematic inductive approach. Responses on informational needs were categorized according to the AYA anamnesis of the Dutch AYA "Young & Cancer" Care Network used in clinical practice. Chi-square and ANOVA tests were performed to assess differences in socio-demographic and clinical characteristics among AYA cancer survivors based on their varying levels of informational needs.

Results: In total, 593 AYA cancer survivors were included (mean, 32.2 years at diagnosis, SD = 5.6). Most common informational needs were related to: family and children (23%), fertility and pregnancy (23%), work and reintegration (20%), peers with cancer (13%), and intimacy and sexuality (13%). Females, AYA cancer survivors diagnosed a longer time ago, those with a college/university education, those diagnosed with breast or hematological malignancies, and those treated with chemotherapy were more likely to have AYA-related informational needs. The most often used sources of support were healthcare professionals (76%), family (72%), social life (69%), and websites (47%).

Conclusions: AYA cancer survivors have informational needs related to their life stage including topics like family and children, and fertility. Tailored information services and support are needed, including opportunities to connect with peers and support for relatives. By addressing the informational needs and sources of support for AYA cancer survivors, we can improve AYA care programs and empower AYA cancer survivors to better cope with the consequences associated with their disease.

Implications for cancer survivors: This study will help to inform the content of AYA websites and platforms and help AYA cancer survivors, relatives, and healthcare professionals to become more aware of the needs of AYA cancer survivors and facilitate better use of relevant information and support services.

Background: Early-stage upper gastrointestinal (UGI) cancer patients, after surgery, have altered gastrointestinal functions, compromising their nutritional status and health outcomes. Nutritional care provision to UGI survivors rarely focuses on long-term survivorship. Here, we explore recommendations for surveillance of micronutrient deficiency and supplementation for UGI cancer survivors after surgery.

Methods: A scoping review, based on the Joanna Briggs Institute methodology for scoping reviews. Six databases (Medline, Embase, CINAHL, Cochrane, Scopus, and PsycINFO) and 21 cancer-related organisation websites were searched. Publications between 2010 and March 2024 with recommendations aimed at adult UGI cancer (oesophageal, gastric, pancreatic, small bowel, and biliary tract) survivors were included.

Results: Twenty-six publications met the selection criteria: 11 reviews (8 narrative reviews, 2 systematic, 1 meta-analysis), 7 expert opinions, 6 guidelines, and 2 consensus papers. Twenty-two publications recommended monitoring of micronutrient deficiencies, and 23 suggested supplementation, with 8 lacking details. Most were targeted at patients with gastric cancer (n = 19), followed by pancreatic cancer (n = 7) and oesophageal cancer (n = 3) with none for biliary tract and small bowel cancers. Vitamin B12 and iron were the most consistently recommended micronutrients across the three tumour groups.

Conclusion: Limited publications recommend surveillance of micronutrient status in UGI cancer survivors during the survivorship phase, especially for oesophageal and pancreatic cancer survivors; most were narrative reviews. These recommendations lacked details, and information was inconsistent.

Implications for cancer survivors: Long-term UGI cancer survivors are at risk of micronutrient deficiency after surgery. A standardised approach to prevent, monitor, and treat micronutrient deficiencies is needed.