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Return to work (RTW) is a marker of functional recovery for working-age cancer survivors. Identifying factors that impact on RTW in cancer survivors is an essential step to guide further research and interventions to support RTW. This systematic review aimed to identify nontreatment, non-cancer-related variables impacting RTW in Australian cancer survivors. A systematic search was conducted in EMBASE, PsycINFO, CINAHL, PubMed, and Google Scholar. Studies were eligible if they included: (1) adults living post diagnosis of malignancy; (2) quantitative data for nontreatment, non-cancer-related variables impacting RTW; (3) only Australian participants. Included studies were critically appraised, and relevant data extracted and synthesized narratively. Six studies were included in the review, published between 2008 and 2020. Studies were of variable quality and mixed methodologies. One study included malignancies of any type with the remainder focusing on survivors of colorectal cancer (n = 3), oropharyngeal cancer (n = 1), and glioblastoma multiforme (n = 1). Multiple factors were related to RTW in individual studies, including older age, presence of three or more comorbidities, fewer work hours pre-morbidly, lower body mass index, longer than recommended sleep duration, and not having private health insurance; however, there was limited consistency in findings between studies. Other variables examined included: occupation type, household income, healthy lifestyle behaviors, flexibility, and duration of employment with workplace; however, no significant associations with RTW were reported. Further research is required to gather compelling evidence on factors that influence RTW in Australian cancer survivors.
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Supervivientes de Cáncer , Neoplasias , Adulto , Humanos , Reinserción al Trabajo , Australia/epidemiología , Sobrevivientes , Neoplasias/diagnóstico , Neoplasias/terapiaRESUMEN
OBJECTIVES: The number of colorectal cancer (CRC) survivors is increasing and current models of survivorship care are unsustainable. There is a drive to implement alternative models of care including shared care between general practitioners (GPs) and hospital-based providers. The primary objective of this study was to explore perspectives on facilitators and barriers to shared care. The secondary objective was to explore experiences of telehealth-delivered care. METHOD: Qualitative data were collected via semi-structured interviews with participants in the Shared Care for Colorectal Cancer Survivors (SCORE) randomised controlled trial. Interviews explored patient experiences of usual and shared survivorship care during the SCORE trial. In response to the COVID pandemic, participant experiences of telehealth appointments were also explored. Interviews were recorded and transcribed for thematic analysis. RESULTS: Twenty survivors of CRC were interviewed with an even number in the shared and usual care arms; 14 (70%) were male. Facilitators to shared care included: good relationships with GPs; convenience of GPs; good communication between providers; desire to reduce public health system pressures. Barriers included: poor communication between clinicians; inaccessibility of GPs; beliefs about GP capacity; and a preference for follow-up care with the hospital after positive treatment experiences. Participants also commonly expressed a preference for telehealth-based follow-up when there was no need for a clinical examination. CONCLUSIONS: This is one of few studies that have explored patient experiences with shared and telehealth-based survivorship care. Findings can guide the implementation of these models, particularly around care coordination, communication, preparation, and personalised pathways of care.
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Supervivientes de Cáncer , Neoplasias Colorrectales , Telemedicina , Femenino , Humanos , Masculino , Neoplasias Colorrectales/terapia , Sobrevivientes , Supervivencia , Investigación Cualitativa , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
Background: SCORE is the first randomised controlled trial (RCT) to examine shared oncologist and general practitioner (GP) follow-up for survivors of colorectal cancer (CRC). SCORE aimed to show that shared care (SC) was non-inferior to usual care (UC) on the EORTC QLQ-C30 Global Health Status/Quality of Life (GHQ-QoL) scale to 12 months. Methods: The study recruited patients from five public hospitals in Melbourne, Australia between February 2017 and May 2021. Patients post curative intent treatment for stage I-III CRC underwent 1:1 randomisation to SC and UC. SC replaced two oncologist visits with GP visits and included a survivorship care plan and primary care management guidelines. Assessments were at baseline, 6 and 12 months. Difference between groups on GHQ-QoL to 12 months was estimated from a mixed model for repeated measures (MMRM), with a non-inferiority margin (NIM) of -10 points. Secondary endpoints included quality of life (QoL); patient perceptions of care; costs and clinical care processes (CEA tests, recurrences). Registration ACTRN12617000004369p. Findings: 150 consenting patients were randomised to SC (N = 74) or UC (N = 76); 11 GPs declined. The mean (SD) GHQ-QoL scores at 12 months were 72 (20.2) for SC versus 73 (17.2) for UC. The MMRM mean estimate of GHQ-QoL across the 6 month and 12 month follow-up was 69 for SC and 73 for UC, mean difference -4.0 (95% CI: -9.0 to 0.9). The lower limit of the 95% CI did not cross the NIM. There was no clear evidence of differences on other QoL, unmet needs or satisfaction scales. At 12 months, the majority preferred SC (40/63; 63%) in the SC group, with equal preference for SC (22/62; 35%) and specialist care (22/62; 35%) in UC group. CEA completion was higher in SC. Recurrences similar between arms. Patients in SC on average incurred USD314 less in health costs versus UC patients. Interpretation: SC seems to be an appropriate and cost-effective model of follow-up for CRC survivors. Funding: Victorian Cancer Agency and Cancer Australia.
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PURPOSE: Increasing use of immune checkpoint inhibitors (ICIs) in routine cancer care will increase the incidence of immune-related adverse events (irAEs). Systems are needed to support remote monitoring for irAEs. Electronic patient-reported outcome (ePRO) symptom monitoring systems can help monitor and manage symptoms and side effects. We assessed the content and features of ePRO symptom monitoring systems for irAEs, and their feasibility, acceptability, and impact on patient outcomes and health care utilization. METHODS: A systematic literature search was conducted in May 2022 on MEDLINE, Embase, PsycINFO, and Cochrane Central Register of Controlled Trials. Quantitative and qualitative data relevant to the review questions were extracted and synthesized in tables. RESULTS: Seven papers describing five ePRO systems were included. All systems collected PROs between clinic visits. Two of five used validated symptom questionnaires, 3/5 provided prompts to complete questionnaires, 4/5 provided reminders to self-report, and 3/5 provided clinician alerts for severe/worsening side effects. Four of five provided coverage of ≥26/30 irAEs in the ASCO irAE guideline. Feasibility and acceptability were demonstrated with consent rates of 54%-100%, 17%-27% of questionnaires generating alerts, and adherence rates of 74%-75%. One paper showed a reduction in grade 3-4 irAEs, treatment discontinuation, clinic visit duration, and emergency department presentations, while another showed no difference in these outcomes or the rate of steroid use. CONCLUSION: There is preliminary evidence of the feasibility and acceptability of ePRO symptom monitoring for irAEs. However, further studies are needed to confirm the impact on ICI-specific outcomes, such as the frequency of grade 3-4 irAEs and duration of immunosuppression. Suggestions for the content and features of future ePRO systems for irAEs are provided.
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Atención Ambulatoria , Inhibidores de Puntos de Control Inmunológico , Humanos , Estudios de Factibilidad , Medición de Resultados Informados por el Paciente , ElectrónicaRESUMEN
BACKGROUND: There is widespread recognition of the need to achieve equitable outcomes for all cancer survivors. This requires understanding of the experiences and outcomes of vulnerable groups. People who identify as sexually or gender diverse are known to be at risk of inferior cancer and survivorship outcomes, however, the posttreatment survivorship experiences of transgender and gender diverse (TGD) people have not been well studied. This study explored the survivorship experiences of people who identify as TGD, focusing on the physical and psychological aspects of the posttreatment survivorship phase and their experiences of follow-up cancer care. METHODS: A qualitative study of 10 TGD cancer survivors. Interviews were transcribed verbatim and data were analyzed by thematic analysis. RESULTS: Six themes were generated from the data. TGD people reported (1) anxiety when attending appointments and avoidance of necessary follow-up care, (2) experiences of transphobia and discrimination within oncology care settings and (3) lack of consideration of TGD identity by providers. Themes further describe (4) physical aspects of being both TGD and a cancer survivor, (5) absence of inclusive and diverse supportive care resources, as well as (6) positive growth after cancer. CONCLUSION: Approaches to mitigate these issues are urgently called for. These include training in TGD health for health-care providers, inclusion of TGD health in medical and nursing curricula, processes to collect and use gender identity and preferred pronoun data in clinical settings, and development of TGD-inclusive information and peer-support resources.
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Supervivientes de Cáncer , Neoplasias , Personas Transgénero , Humanos , Masculino , Femenino , Personas Transgénero/psicología , Identidad de Género , Australia/epidemiología , Neoplasias/epidemiología , Neoplasias/terapiaRESUMEN
BACKGROUND: Immune checkpoint inhibitors (ICI) and targeted therapies (TT) have significantly improved disease control and survival in people with stage III and IV cutaneous melanoma. Understanding the impact of therapy on health-related quality of life (HRQL) is vital for treatment decision-making and determining targets for supportive care intervention. We conducted a mixed-methods systematic review to synthesise the impact of ICIs and TT on all domains of HRQL in these populations. METHODS: A systematic literature search was conducted in April 2022 on MEDLINE, PsycINFO, Embase and the Cochrane Central Register of Controlled Trials. Quantitative and qualitative data relevant to the review question were extracted and synthesised in tables according to setting (adjuvant versus metastatic), treatment type (ICI versus TT) and HRQL issue. RESULTS: Twenty-eight papers describing 27 studies were included: 15 randomised controlled trials (RCTs), four cohort studies, four single arm cross-sectional studies, two qualitative studies, one case control study and one mixed-methods study. In four studies of people with resected stage III melanoma, adjuvant pembrolizumab and dabrafenib-trametinib did not clinically or statistically change HRQL compared to baseline. In 17 studies of people with unresectable stage III/IV melanoma, inconsistencies in the impact of ICI on symptoms, functioning and overall HRQL were noted across different study designs. TT was associated with improvements in symptoms, functioning and HRQL across six studies. CONCLUSION: This review highlights the key physical, psychological and social issues experienced by people with stage III and IV melanoma treated with ICI and TT. Inconsistencies in the impact of ICI on HRQL were observed in different study designs. This highlights the need for treatment-specific patient-reported outcome measures for determining the impact of these therapies on HRQL and real-world data to inform treatment decision-making and appropriate supportive care interventions.
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Inhibidores de Puntos de Control Inmunológico , Melanoma , Calidad de Vida , Neoplasias Cutáneas , Humanos , Inhibidores de Puntos de Control Inmunológico/uso terapéutico , Melanoma/tratamiento farmacológico , Neoplasias Cutáneas/tratamiento farmacológico , Melanoma Cutáneo MalignoRESUMEN
AIM: Response to the substantial and long-term impacts that a cancer diagnosis and treatment has on the growing population of cancer survivors, requires priority-driven, impactful research. This study aimed to map Australian cancer survivorship research activities to identify gaps and opportunities for improvement and compare activities against identified survivorship research priorities. METHODS: An online survey was completed by Australian researchers regarding their cancer survivorship research, and the barriers they identified to conducting such research. Current research activity was compared to recently established Australian survivorship research priorities. RESULTS: Overall, 178 participants completed the online survey. The majority of the research undertaken utilized survey or qualitative designs and focused on breast cancer, adult populations, and those in early survivorship (<5 years post-treatment). Barriers to conducting survivorship research included funding, collaboration and networking, mentoring, and time constraints. There was moderate alignment with existing research priorities. Investigating models of care and health service delivery were the most frequently researched priorities. Research priorities that were less commonly investigated included patient navigation, patient-reported outcomes, multimorbidity, fear of cancer recurrence, and economic issues. CONCLUSION: This study provides the first snapshot of Australian survivorship research activity. Comparison to established priorities demonstrates health services research is receiving attention and highlights areas for potential pursuits, such as rare cancers or multimorbidity. Findings indicate the need for improved funding and infrastructure to support researchers in advancing the survivorship research agenda.
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Neoplasias de la Mama , Supervivientes de Cáncer , Adulto , Humanos , Femenino , Australia/epidemiología , Recurrencia Local de Neoplasia , InvestigaciónRESUMEN
PURPOSE: Cancer survivors face higher rates of unemployment compared with individuals without a history of cancer. Compared to other cancer types, head and neck cancer (HNC) survivors face unique disease and treatment-specific issues that may limit return to work (RTW). This review aimed to determine employment outcomes of HNC survivors post-treatment and identify factors associated with RTW. METHODS: A systematic search was conducted in MEDLINE, CINAHL and PsycINFO in December 2021. Inclusion criteria included adults (≥ 18 years); completed treatment for HNC; data available on RTW post-treatment. Both quantitative and qualitative studies were considered. Studies were critically appraised and data synthesised narratively. RESULTS: Twenty-nine publications were included: 22 quantitative, four qualitative and three mixed methods. The proportion of HNC survivors who RTW ranged from 32 to 90%, with participants taking 3.6-11 months to RTW. Working in a professional role and having a supportive work environment were positively associated with RTW. CONCLUSIONS: The proportion of HNC survivors who RTW varies significantly which may be due to the heterogeneity between the studies including difference in clinical characteristics of the participants and/or sample size. Future studies that are longitudinal, adequately powered and measure a range of clinical and demographic variables are needed to better understand the RTW experience and assist development of effective RTW strategies. IMPLICATIONS FOR CANCER SURVIVORS: This review suggests potential areas for intervention, including enhanced symptom management and engaging with employers to foster supportive work environments to support RTW of HNC survivors.
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Supervivientes de Cáncer , Neoplasias de Cabeza y Cuello , Adulto , Humanos , Reinserción al Trabajo , Neoplasias de Cabeza y Cuello/terapia , Sobrevivientes , EmpleoRESUMEN
PURPOSE: The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales. METHODS: We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales. RESULTS: Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items. CONCLUSIONS: The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study. IMPLICATIONS FOR CANCER SURVIVORS: The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.
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Supervivientes de Cáncer , Neoplasias , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida , Neoplasias/terapia , Neoplasias/diagnóstico , Supervivencia , Encuestas y CuestionariosRESUMEN
PURPOSE: To critically assess the effectiveness and implementation of different models of post-treatment cancer survivorship care compared to specialist-led models of survivorship care assessed in published systematic reviews. METHODS: MEDLINE, CINAHL, Embase, and Cochrane CENTRAL databases were searched from January 2005 to May 2021. Systematic reviews that compared at least two models of cancer survivorship care were included. Article selection, data extraction, and critical appraisal were conducted independently by two authors. The models were evaluated according to cancer survivorship care domains, patient and caregiver experience, communication and decision-making, care coordination, quality of life, healthcare utilization, costs, and mortality. Barriers and facilitators to implementation were also synthesized. RESULTS: Twelve systematic reviews were included, capturing 53 primary studies. Effectiveness for managing survivors' physical and psychosocial outcomes was found to be no different across models. Nurse-led and primary care provider-led models may produce cost savings to cancer survivors and healthcare systems. Barriers to the implementation of different models of care included limited resources, communication, and care coordination, while facilitators included survivor engagement, planning, and flexible services. CONCLUSIONS: Despite evidence regarding the equivalent effectiveness of nurse-led, primary care-led, or shared care models, these models are not widely adopted, and evidence-based recommendations to guide implementation are required. Further research is needed to address effectiveness in understudied domains of care and outcomes and across different population groups. IMPLICATIONS FOR CANCER SURVIVORS: Rather than aiming for an optimal "one-size fits all" model of survivorship care, applying the most appropriate model in distinct contexts can improve outcomes and healthcare efficiency.
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Supervivientes de Cáncer , Neoplasias , Humanos , Supervivencia , Calidad de Vida/psicología , Revisiones Sistemáticas como Asunto , Atención a la Salud , Neoplasias/psicologíaRESUMEN
The number of survivors of cancer is increasing substantially. Current models of care are unsustainable and fail to address the many unmet needs of survivors of cancer. Numerous trials have investigated alternate models of care, including models led by primary-care providers, care shared between oncology specialists and primary-care providers, and care led by oncology nurses. These alternate models appear to be at least as effective as specialist-led care and are applicable to many survivors of cancer. Choosing the most appropriate care model for each patient depends on patient-level factors (such as risk of longer-term effects, late effects, individual desire, and capacity to self-manage), local services, and health-care policy. Wider implementation of alternative models requires appropriate support for non-oncologist care providers and endorsement of these models by cancer teams with their patients. The COVID-19 pandemic has driven some changes in practice that are more patient-centred and should continue. Improved models should shift from a predominant focus on detection of cancer recurrence and seek to improve the quality of life, functional outcomes, experience, and survival of survivors of cancer, reduce the risk of recurrence and new cancers, improve the management of comorbidities, and reduce costs to patients and payers. This Series paper focuses primarily on high-income countries, where most data have been derived. However, future research should consider the applicability of these models in a wider range of health-care settings and for a wider range of cancers.
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COVID-19 , Supervivientes de Cáncer , Neoplasias , COVID-19/epidemiología , Humanos , Neoplasias/terapia , Pandemias , Calidad de Vida , SobrevivientesRESUMEN
PURPOSE: To examine how socio-demographic, comorbidities and information needs influence quality of life (QoL) outcomes of survivors of breast, colorectal, or prostate cancer, non-Hodgkin lymphoma or melanoma. METHODS: Cross-sectional postal survey with eligible participants identified through a population-based cancer registry. QoL outcomes were assessed by EQ-5D-5L, social difficulties index (SDI) and, for those employed at diagnosis, current employment. Regression analyses explored associations between outcome variables and cancer type, age, time since diagnosis, residential location, socio-economic disadvantage, comorbidities and unmet information needs. Mediation analyses examined whether comorbidities and information needs explained relationships between outcome variables and socio-economic disadvantage. RESULTS: 2115 survivors participated. Mean EQ-5D-5L scores (mean = 0.84) were similar to population averages and SDI scores were low for the entire sample (mean = 3.80). In multivariate analyses, being aged over 80, greater socio-economic disadvantage, comorbidities and unmet information needs decreased EQ-5D-5L scores. Higher SDI scores were associated with socio-economic disadvantage, comorbidities and unmet information needs. Not being employed was associated with being aged over 50, more comorbidities and socio-economic disadvantage. Comorbidities but not information needs partially mediated the impact of socio-economic disadvantage on EQ-5D-5L and SDI accounting for 17% and 14% of the total effect of socio-economic disadvantage respectively. Neither comorbidities nor information needs mediated the association between socio-economic disadvantage and employment outcomes. CONCLUSIONS: To improve quality of life, survivorship care should be better tailored to address the needs of individuals given their overall health and impact of comorbidities, their age and type of cancer and not simply time since diagnosis.
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Supervivientes de Cáncer , Melanoma , Anciano , Australia/epidemiología , Estudios Transversales , Empleo , Humanos , Masculino , Calidad de Vida , Encuestas y CuestionariosRESUMEN
PURPOSE: The aim of this study was to establish research and infrastructure priorities for cancer survivorship. METHODS: A two-round modified online Delphi study was completed by Australian experts in cancer survivorship. Initial priorities were generated from the literature and organized into four research categories: physiological outcomes, psychosocial outcomes, population groups, and health services; and one research infrastructure category. In round 1 (R1), panelists ranked the importance of 77 items on a five-point scale (not at all important to very important). In round 2 (R2), panelists ranked their top 5 priorities within each category. Panelists also specified the type of research needed, such as biological, exploratory, intervention development, or implementation, for the items within each research category. RESULTS: Response rates were 76% (63/82) and 82% (68/82) respectively. After R1, 12 items were added, and 16 items combined or reworded. In R2, the highest prioritized research topics and the preferred type of research in each category were: biological research in cancer progression and recurrence; implementation and dissemination research for fear of recurrence; exploratory research for rare cancer types; and implementation research for quality of care topics. Data availability was listed as the most important priority for research infrastructure. CONCLUSIONS: This study has defined priorities that can be used to support coordinated action between researchers, funding bodies, and other key stakeholders. Designing future research which addresses these priorities will expand our ability to meet survivors' diverse needs and lead to improved outcomes.
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Supervivientes de Cáncer , Neoplasias , Australia , Técnica Delphi , Humanos , Neoplasias/terapia , Proyectos de Investigación , Encuestas y CuestionariosRESUMEN
This research sought to answer the question 'what quality criteria do survivorship experts consider to be important in achieving optimal cancer survivorship care?'. An online modified reactive Delphi survey consisting of two rounds was completed with experts including consumers, clinicians, researchers, policymakers and quality and accreditation professionals. Survey items were based on international literature and considered three domains: Policy, process and outcome. In round 1 (R1), experts ranked the importance of 68 criteria on a five-point Likert scale. Criteria were retained if scored 4 (important) or 5 (very important) by >75% participants. In round 2 (R2), experts ranked top 10 criteria per domain. Response rates were 79% (70/89) and 84% (76/91), respectively. After R1, six criteria were removed and six were added. From R2, ten items for each domain were retained. These 30 items formed the Quality Framework. A consensus meeting considered priority items from the Quality Framework and feasibility of data collection. Prioritized items included having a policy on survivorship care; the existence of a multidisciplinary survivorship program (policy); appropriate processes to assess survivors' emotional, psychological and physical needs following treatment and stratification to appropriate models of care (process); and collecting patient-reported outcomes, quality of life and survival rates (outcome).
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PURPOSE: To care for the growing population of cancer survivors, health services worldwide must reconsider how to deliver care to people living with and beyond a cancer diagnosis. Shared care, defined as cancer care that is shared between specialist and primary care providers, is one model that has been investigated; however, practical guidance to support implementation is lacking. This systematic review aimed to explore facilitators and barriers to implementing shared cancer care and to develop practice and policy recommendations to support implementation. METHODS: A systematic literature search was conducted in June 2019 across MEDLINE, Embase, Emcare, and PsycINFO databases. Quantitative and qualitative data relevant to the review question were extracted and synthesized following a mixed methods approach. RESULTS: Thirteen papers were included in the review, 10 qualitative and three quantitative. Included articles were from Australia (n = 8), the USA (n = 3), and one each from the UK and the Netherlands. Sixteen themes were developed under four categories of patient, healthcare professional, process, and policy factors. Key themes included the perceived need for primary care provider training, having clearly defined roles for each healthcare provider, providing general practitioners with diagnostic and treatment summaries, as well as protocols or guidelines for follow-up care, ensuring rapid and accurate communication between providers, utilizing electronic medical records and survivorship care plans as communication tools, and developing consistent policy to reduce fragmentation across services. CONCLUSION: Recommendations for practice and policy were generated based on review findings that may support broader implementation of shared cancer care.
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Cuidados Posteriores/métodos , Supervivientes de Cáncer/estadística & datos numéricos , Personal de Salud/estadística & datos numéricos , Relaciones Interprofesionales , Atención Primaria de Salud/métodos , Australia , Femenino , Humanos , Neoplasias/terapia , Países Bajos , SupervivenciaRESUMEN
INTRODUCTION AND AIMS: The burden of treatment toxicities in breast cancer requires longitudinal assessment of patient-centered outcomes. The current study aimed to assess the feasibility of collecting general and breast cancer-specific quality of life (QoL), ongoing symptoms and unmet needs, in patients identified from a population-based cancer registry, and to assess the contribution of demographic, disease, and care-related factors. METHODS: Eligible patients were identified from the Victorian Cancer Registry (Victoria, Australia) using the ICD-10 code C50, diagnosed during 2013, 2011, and 2009. Data included age, area of residence, cancer diagnosis, date of diagnosis, treatment modality, and staging. Patients completed a number of validated tools including the EQ-5D-5L and FACT-B, symptom items, and unmet needs. RESULTS: Of 1006 eligible patients, the overall response rate was 45.6%. Survivors 1 year post-diagnosis had significantly greater problems with pain or discomfort (59.2%) and with anxiety or depression (51.3%) compared with survivors 5 years post-diagnosis (45.1% with pain or discomfort, p < 0.05, and 32.7% with anxiety or depression, p < 0.01). For the 5 years group, pain or discomfort and anxiety or depression were significantly higher than for the general population (32.2% and 21.6%, respectively). Improved quality of life was found in those who did not receive chemotherapy (coefficient = 0.2269, p = 0.0409) and those who did not have a longstanding health condition (coefficient = 0.6342, p < 0.001). Poorer quality of life was associated with those who were not certain what was happening with their breast cancer (coefficient = - 0.3674, p = 0.0094) and those whose cancer had not been treated, had been treated but was still present, or had returned after treatment (coefficient = - 0.5314, p = 0.0136). Across the total cohort, women were bothered by changes in weight (21.3%) and concerned about the effects of stress on their cancer (19.6%). Fear of cancer recurrence was commonly reported and did not diminish over time (60.7%, 52.2%, and 56.9% at 1, 3, and 5 years, respectively). CONCLUSION: Collecting patient-reported outcomes from a population-based sample of breast cancer survivors was feasible. Physical symptoms and psychosocial issues are common and are persistent. Use of chemotherapy was the only treatment modality that significantly impacted on QoL.
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Neoplasias de la Mama/psicología , Supervivientes de Cáncer/psicología , Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Adulto , Anciano , Neoplasias de la Mama/mortalidad , Estudios de Factibilidad , Femenino , Humanos , Persona de Mediana Edad , Sistema de Registros , Factores de TiempoRESUMEN
Survivorship care that is shared between oncology and primary care providers may be a suitable model to effectively and efficiently care for the growing survivor population, however recommendations supporting implementation are lacking. This qualitative study aimed to explore health care professionals' (HCPs) perceived facilitators and barriers to the implementation, delivery and sustainability of shared survivorship care. Data were collected via semi-structured focus groups and analysed by inductive thematic analysis. Results identified four overarching themes: (1) considerations for HCPs; (2) considerations regarding patients; (3) considerations for planning and process; and (4) policy implications. For HCPs, subthemes included general practitioner (GP, primary care physician) knowledge and need for further training, having clear protocols for follow-up, and direct communication channels between providers. Patient considerations included identifying patients suitable for shared care, discussing shared care with patients early in their cancer journey, and patients' relationships with their GPs. Regarding process, subthemes included rapid referral pathways back to hospital, care coordination, and ongoing data collection to inform refinement of a dynamic model. Finally, policy implications included development of policy to support a consistent shared care model, and reliable and sustainable funding mechanisms. Based on study findings, a set of recommendations for practice and policy were developed.
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Survivors of colorectal cancer (CRC) may experience a range of physical, psychosocial, and practical challenges as a consequence of their diagnosis. We assessed the patterns and documented content of follow-up visits within the first three years following treatment, in comparison to survivorship care guidelines. Survivors with stage I-III CRC who underwent curative resection at Peter MacCallum Cancer Centre from July 2015 to January 2018 were followed for up to 1080 days. Patterns of follow-up were calculated by recording the date and specialty of each visit; documented content was assessed using a study-specific audit tool for the first year (360 days) of follow-up. Forty-eight survivors comprised the study population, 34 of whom (71%) attended the recommended two to four follow-up visits in their first year. Visit notes documented new symptoms (96%), physical changes (85%), physical examination (63%), and investigations (56%-90%); none had documented discussions of screening for other primary cancers, or regular health checks and/or screening. Each survivor had at least one outpatient letter that was sent to their primary care physician, but responsibilities were not adequately defined (31%). Although survivors had regular follow-up in their first year, documentation did not consistently address aspects of wider survivorship care.
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PURPOSE: There is a lack of population-based data describing patient reported outcomes (PROs) in melanoma survivors which could guide the development of interventions and resources. This study assessed overall quality of life (QoL), self-reported symptoms and unmet information needs in melanoma survivors 1, 3 or 5 years post-diagnosis. METHODS: A cross-sectional postal survey was conducted in Victoria, Australia, with eligible melanoma survivors identified from a population-based cancer registry. Patient-reported outcome measures included the EuroQoL 5-Dimension 5-Level (EQ-5D-5L), and self-reported symptoms, difficulties and information needs. Associations between demographic, disease and care-related factors and QoL were also assessed. RESULTS: A total of 476 melanoma survivors participated in the study (response rate 46.5%). Anxiety and depressive symptoms were more prevalent in survivors compared to the general population (30.7% vs 21.6%; p < 0.01). Fear of cancer recurrence (48.3%) and fear of cancer spreading (37.8%) were the most commonly reported symptom items, and approximately one in five melanoma survivors had unmet information needs related to psychological aspects of living with melanoma. Recurrent melanoma, living in a nursing home, chronic comorbidities, and melanoma diagnosed at > 2 mm thickness were associated with lower QoL. CONCLUSION: A large proportion of melanoma survivors reported ongoing quality of life deficits, fear of cancer recurrence, as well as unmet information needs up to 5 years after diagnosis. Patients may benefit from tailored informational resources and interventions that address the psychological aspects of living with and beyond melanoma.