RESUMEN
As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families.
Asunto(s)
Demencia , Neoplasias , Humanos , Demencia/complicaciones , Demencia/diagnóstico , Demencia/terapia , Cuidadores , Neoplasias/complicaciones , Neoplasias/terapiaRESUMEN
Tools have been developed to facilitate communication and support information exchange between people diagnosed with cancer and their physicians. Patient-reported outcome measures, question prompt lists, patient-held records, tape recordings of consultations, decision aids, and survivorship care plans have all been promoted as potential tools, and there is extensive literature exploring their impact on patient outcomes. Eleven systematic reviews of studies evaluating tools to facilitate patient-physician communication were reviewed and summarized in this overview of systematic reviews. Across the systematic reviews, 87 publications reported on 84 primary studies involving 15,381 participants. Routine use of patient-reported outcome measures and feedback of results to clinicians can improve pain management, physician-patient communication, and symptom detection and control; increase utilization of supportive care; and increase patient involvement in care. Question prompt lists can increase the number of questions asked by patients without increasing consultation length and may encourage them to reflect and plan questions before the consultation. There is limited benefit in audio recording consultations or using patient-held records during consultations. Physicians should be supported by adequately resourced health services to respond effectively to the range of clinical and broader patient needs identified through the routine use of tools to facilitate communication.
Asunto(s)
Comunicación , Neoplasias , Relaciones Médico-Paciente , Derivación y Consulta , Humanos , Neoplasias/diagnóstico , Neoplasias/psicología , Neoplasias/terapia , Participación del Paciente , Medición de Resultados Informados por el PacienteRESUMEN
OBJECTIVE: As the Internet is a ubiquitous resource for information, we aimed to replicate a patient's Google search to identify and assess the quality of online mental health/wellbeing materials available to support women living with or beyond cancer. METHODS: A Google search was performed using a key term search strategy including search strings 'cancer', 'wellbeing', 'distress' and 'resources' to identify online resources of diverse formats (i.e., factsheet, website, program, course, video, webinar, e-book, podcast). The quality evaluation scoring tool (QUEST) was used to analyse the quality of health information provided. RESULTS: The search strategy resulted in 283 resources, 117 of which met inclusion criteria across four countries: Australia, USA, UK, and Canada. Websites and factsheets were primarily retrieved. The average QUEST score was 10.04 (highest possible score is 28), indicating low quality, with 92.31% of resources lacking references to sources of information. CONCLUSIONS: Our data indicated a lack of evidence-based support resources and engaging information available online for people living with or beyond cancer. The majority of online resources were non-specific to breast cancer and lacked authorship and attribution.
Asunto(s)
Neoplasias de la Mama , Humanos , Femenino , Neoplasias de la Mama/terapia , Salud Mental , Motor de Búsqueda , Internet , SobrevivientesRESUMEN
PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.
Asunto(s)
Supervivientes de Cáncer , Neoplasias , Cuidados Paliativos , Supervivencia , Humanos , Técnica Delphi , Metástasis de la Neoplasia , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Atención Dirigida al Paciente/normas , Atención Dirigida al Paciente/organización & administración , Guías de Práctica Clínica como Asunto , Calidad de la Atención de Salud/normasRESUMEN
Over 18 million people worldwide were diagnosed with cancer in 2020, including over 150,000 people in Australia. Although improved early detection and treatment have increased the survival rates, cardiotoxic treatment and inadequate management of cardiovascular risk factors have resulted in cardiovascular disease (CVD) being one of the leading causes of non-cancer-related death and disability among cancer survivors. International guidelines outline the standards of care for CVD risk surveillance and management. However, Australian cardio-oncology policies and clinical guidelines are limited. There is increasing growth of cardio-oncology research in Australia and support from leading Australian professional bodies and advocacy and research networks, including the Cardiac Society of Australia and New Zealand, the Clinical Oncology Society of Australia, the National Heart Foundation of Australia, and the Australian Cardiovascular Alliance (ACvA). Thus, opportunities to drive multidisciplinary cardio-oncology initiatives are growing, including grant funding, position statements, and novel research to inform new policies. The ACvA has a unique flagship structure that spans the translational research pipeline from drug discovery to implementation science. This article aims to highlight how multidisciplinary cardio-oncology innovations could intersect with the seven ACvA flagships, and to showcase Australian achievements in cardio-oncology thus far. We summarise eight key priority areas for future cardio-oncology research that emerged. These strategies will strengthen cardio-oncology research and care in Australia, and drive new guidelines, policies, and government initiatives to ensure equity in health outcomes for all cardio-oncology patients.
Asunto(s)
Cardiología , Enfermedades Cardiovasculares , Oncología Médica , Humanos , Australia/epidemiología , Enfermedades Cardiovasculares/terapia , Enfermedades Cardiovasculares/epidemiología , Oncología Médica/organización & administración , Oncología Médica/normas , Cardiología/normas , Neoplasias/terapia , Neoplasias/complicaciones , Investigación Biomédica , CardiooncologíaRESUMEN
BACKGROUND: Pain is a common, debilitating, and feared symptom, including among cancer survivors. However, large-scale population-based evidence on pain and its impact in cancer survivors is limited. We quantified the prevalence of pain in community-dwelling people with and without cancer, and its relation to physical functioning, psychological distress, and quality of life (QoL). METHODS: Questionnaire data from participants in the 45 and Up Study (Wave 2, n = 122,398, 2012-2015, mean age = 60.8 years), an Australian population-based cohort study, were linked to cancer registration data to ascertain prior cancer diagnoses. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for bodily pain and pain sufficient to interfere with daily activities (high-impact pain) in people with versus without cancer, for 13 cancer types, overall and according to clinical, personal, and health characteristics. The relation of high-impact pain to physical and mental health outcomes was quantified in people with and without cancer. RESULTS: Overall, 34.9% (5,436/15,570) of cancer survivors and 31.3% (32,471/103,604) of participants without cancer reported bodily pain (PR = 1.07 [95% CI = 1.05-1.10]), and 15.9% (2,468/15,550) versus 13.1% (13,573/103,623), respectively, reported high-impact pain (PR = 1.13 [1.09-1.18]). Pain was greater with more recent cancer diagnosis, more advanced disease, and recent cancer treatment. High-impact pain varied by cancer type; compared to cancer-free participants, PRs were: 2.23 (1.71-2.90) for multiple myeloma; 1.87 (1.53-2.29) for lung cancer; 1.06 (0.98-1.16) for breast cancer; 1.05 (0.94-1.17) for colorectal cancer; 1.04 (0.96-1.13) for prostate cancer; and 1.02 (0.92-1.12) for melanoma. Regardless of cancer diagnosis, high-impact pain was strongly related to impaired physical functioning, psychological distress, and reduced QoL. CONCLUSIONS: Pain is common, interfering with daily life in around one-in-eight older community-dwelling participants. Pain was elevated overall in cancer survivors, particularly for certain cancer types, around diagnosis and treatment, and with advanced disease. However, pain was comparable to population levels for many common cancers, including breast, prostate and colorectal cancer, and melanoma.
Asunto(s)
Neoplasias de la Mama , Supervivientes de Cáncer , Neoplasias Colorrectales , Melanoma , Masculino , Humanos , Persona de Mediana Edad , Calidad de Vida , Estudios de Cohortes , Australia/epidemiología , Dolor/epidemiología , Dolor/etiologíaRESUMEN
Answer questions and earn CME/CNE Comorbidity is common among cancer patients and, with an aging population, is becoming more so. Comorbidity potentially affects the development, stage at diagnosis, treatment, and outcomes of people with cancer. Despite the intimate relationship between comorbidity and cancer, there is limited consensus on how to record, interpret, or manage comorbidity in the context of cancer, with the result that patients who have comorbidity are less likely to receive treatment with curative intent. Evidence in this area is lacking because of the frequent exclusion of patients with comorbidity from randomized controlled trials. There is evidence that some patients with comorbidity have potentially curative treatment unnecessarily modified, compromising optimal care. Patients with comorbidity have poorer survival, poorer quality of life, and higher health care costs. Strategies to address these issues include improving the evidence base for patients with comorbidity, further development of clinical tools to assist decision making, improved integration and coordination of care, and skill development for clinicians. CA Cancer J Clin 2016;66:337-350. © 2016 American Cancer Society.
Asunto(s)
Envejecimiento , Neoplasias/enfermería , Calidad de Vida , American Cancer Society , Comorbilidad , Educación Continua en Enfermería , Humanos , Neoplasias/economía , Neoplasias/epidemiología , Neoplasias/terapia , Prevalencia , Factores de Riesgo , Tasa de Supervivencia , Estados Unidos/epidemiologíaRESUMEN
PURPOSES: User preferences for how programs are delivered are an important consideration when developing healthy living interventions. The aim of this study was to investigate (a) if cancer survivors prefer telephone or internet delivery for a healthy living intervention and (b) what factors were associated with delivery preference. METHODS: Australian cancer survivors (18 + years) were invited to complete an online or hardcopy cross-sectional survey measuring social and clinical demographic factors and validated measures of self-efficacy, health literacy, and social support. RESULTS: Of the 168 respondents, the majority were female (n = 147, 92%) and breast cancer survivors (n = 122, 80%) and preferred internet delivery (n = 109, 65%). Participants who preferred internet delivery had a longer time since diagnosis (M = 9.85 years, SD = 8.20) compared to those who preferred telephone (M = 6.80 years, SD = 5.54), p = .03. However, logistic regression analyses demonstrated that no other variables (age, gender, socio-economic status, BMI, education, self-efficacy, health literacy, nor social support) had a direct association on delivery preference. CONCLUSIONS: Cancer survivors appear to prefer internet delivery to telephone, particularly for those further along the survivorship trajectory. Future intervention development should therefore consider the internet modality for delivering accessible health interventions and offer the program to long-term cancer survivors. Whether these findings are replicable in the current post-pandemic phase is an important avenue for future research.
Asunto(s)
Neoplasias de la Mama , Supervivientes de Cáncer , Humanos , Masculino , Femenino , Estudios Transversales , Australia , Conductas Relacionadas con la Salud , InternetRESUMEN
PURPOSE: Breast cancer survivors experience significant burden from comorbid chronic conditions, but little is known about how well these conditions are managed. We conducted a national survey of Australian breast cancer survivors to examine the burden of chronic conditions, their impact and care alignment with the principles of chronic condition management. METHODS: A study-specific survey incorporated questions about chronic conditions using the Charlson Comorbidity Index (CCI), functional status using the Vulnerable Elders Survey (VES) and perceived quality of care for cancer and non-cancer conditions using the Patient Assessment of Care for Chronic Conditions Survey (PACIC). Members of Breast Cancer Network Australia (BCNA) were invited via email to complete the survey either online or through direct mail. RESULTS: The survey was sent to 2198 BCNA members and 177 responses were received (8.1%). Respondents were women aged 32-88 years (median 60.1 years). The majority were married (116; 67.7%) and had private insurance (137; 80.0%) and reported good to excellent health (119; 73.5%). Other health conditions were reported by 157 (88.7%), the most common being chronic pain (27.1%) and fatigue (22.0%). When asked about management of comorbidities or cancer, less than 20% were routinely asked about management goals, helped to set goals or asked about health habits. CONCLUSIONS: In this population of survivors with good health status and high rates of private insurance, comorbidities were common and their management, as well as management of breast cancer, was poorly aligned with chronic condition management principles.
Asunto(s)
Neoplasias de la Mama , Supervivientes de Cáncer , Femenino , Humanos , Anciano , Masculino , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/terapia , Australia/epidemiología , Comorbilidad , Sobrevivientes , Encuestas y Cuestionarios , Enfermedad CrónicaRESUMEN
Older adults represent a growing population amongst cancer survivors who require specific consideration given the complex and largely unknown interactions between cancer-related concerns and age-related conditions. The increasing use of geriatric assessment (GA) has enabled oncologists to appropriately assess older patients' overall health status, personalise anti-cancer treatment and improve survival. However, whilst current research and practice focus on improving the management of older adults with cancer in the acute setting, the progress in the field of survivorship research in geriatric oncology is lagging. As cancer survivorship is a continuum, planning for a healthy survivorship should start at the time of cancer diagnosis. GA can play an important role in identifying potential survivorship issues and optimising delivery of survivorship care. A goal-directed, patient-focused geriatric survivorship care plan that involves a multidisciplinary team provides a framework for a personalised delivery of survivorship care in this patient group and there is a need for tailored interventions that support self-management and care integration. Research on the impact of cancer and its treatment on geriatric-specific outcomes needs to be prioritised through global initiatives to encompass a diverse and heterogenous population of adult cancer survivors.
Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Anciano , Neoplasias/diagnóstico , Neoplasias/terapia , Neoplasias/epidemiología , Supervivencia , Planificación de Atención al PacienteRESUMEN
Cancer and cardiovascular disease (CVD) commonly coexist, with increasing evidence that long-term cancer survivors are more likely to die from CVD than the general population. Effective management of CVD and its risk factors requires identification of patients at increased risk who may benefit from early intervention and their appropriate monitoring across the disease trajectory. Improving outcomes requires new models of multidisciplinary cancer care supported by care pathways. Such pathways require a clear delineation of the roles and responsibilities of all team members and provision of appropriate enablers for their delivery. These include accessible point-of-care tools/risk calculators, patient resources, and the provision of tailored training opportunities for health care providers.
RESUMEN
BACKGROUND: Women living with metastatic breast cancer (MBC) are at risk of significantly impaired quality of life (QOL), symptom burden, distress and fear of progression, and unmet needs, yet they face barriers to accessing evidence-based psychosocial treatments. Our group therefore developed Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. This study aims to assess its efficacy in improving mental and other QOL domains, distress, fear of progression, unmet needs, and health service utilisation. METHODS: The multi-site randomised controlled trial (RCT) will enrol 370 Australian participants. Eligible participants are adult (18 years +) women diagnosed with MBC, with a life expectancy of 6 months or more, with sufficient English-language literacy to provide informed consent. Participants will be identified, screened and referred from one of 10 Australian sites, or via self-referral in response to advertisements. Participants complete four online questionnaires: prior to accessing their program ('baseline'), 6 weeks later ('post-intervention'), then 3 months and 6 months post-intervention. Consenting participants will be randomised to either FMW-A (intervention), or Breast Cancer Network Australia's (BCNA) online/app resource My Journey (minimal intervention attention-control). This is a single-blind study, with randomisation computer-generated and stratified by site. FMW-A is a 6-module program addressing some of the most common issues experienced by women with MBC, with BCNA control resources integrated within the 'resources' section. All modules are immediately accessible, with an additional booster module released 10 weeks later. The primary outcome is mental QOL; statistical criteria for superiority is defined as a 4-point difference between groups at post-treatment. Secondary outcomes include other QOL domains, distress, fear of progression, health service use, intervention adherence, and user satisfaction. DISCUSSION: This will be the first adequately powered RCT of a self-directed online intervention for women with MBC. If efficacious, FMW-A will help address two national key priorities for management of MBC - enhancing QOL and reducing symptom burden. FMW-A has the potential to address unmet needs and overcome access barriers for this overlooked population, while reducing health system burden. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 29/10/2021. Trial ID ACTRN12621001482853p. https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382714&isReview=true.
Asunto(s)
Neoplasias de la Mama , Intervención basada en la Internet , Adulto , Femenino , Humanos , Intervención Psicosocial , Australia , Neoplasias de la Mama/terapia , Calidad de Vida/psicología , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
PURPOSE: Few digital psycho-oncology programs have been adopted into routine practice; how these programs are used after trial completion remains unexplored. To address this, the present study transitioned our evidence-based 6-module CBT-based program, Finding My Way, into open access (OA) after completion of the RCT, and compared uptake, usage, and psychosocial outcomes to the earlier RCT. METHODS: Recruitment was passive, via promotion through (1) media and social media releases, (2) public lectures, (3) radio interviews and podcasts, and (4) clinician-initiated referral. Measures included number of enrolled users, number of modules completed, and pre- and optional post-measures of distress and quality of life (QOL). RESULTS: Uptake was lower in OA (n = 120; 63% of RCT). Usage was markedly lower: 1.5 modules were completed on average (vs 3.7 in RCT), and only 13% completed a 'therapeutic dose' of 4 + modules (vs. 50% in RCT). Research attrition was high; n = 13 completed post-measures. OA users were more sociodemographically and clinically diverse than RCT users, had higher baseline distress (OA Mpre = 36.7, SD = 26.5; RCT Mpre = 26.5, SD = 21.7), and reported larger pre-post reductions than their RCT counterparts (OA Mpost = 23.9, SD = 20.7; RCT Mpost = 21.2, SD = 21.2). Moderate improvements in mental QOL occurred during OA (Mpre = 37.3, SD = 12.6; Mpost = 44.5, SD = 12.1), broadly replicating RCT findings. CONCLUSION: Findings that OA users were more medically and sociodemographically diverse and distressed at baseline than their RCT counterparts, and - despite having lower usage of the program - achieved larger changes from baseline to post-program, will help to shape future intervention design, tailoring, and dissemination.
Asunto(s)
Neoplasias , Calidad de Vida , Acceso a la Información , Humanos , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida/psicologíaRESUMEN
PURPOSE: Individuals diagnosed with cancer have a range of supportive care needs that are often unmet despite substantial evidence supporting interventions to address them. Addressing this knowledge-translation gap represents a significant opportunity to improve health outcomes. A scoping review of reviews was conducted to map the breadth of evidence for interventions, highlighting those with an existing evidence base, as well as those requiring further research. METHODS: Systematic or meta-analytic reviews that examined interventions targeting supportive care needs of adults and children with cancer published between 2009 and 2019 were identified via searches in Medline, PsycINFO, CINAHL, Scopus and Cochrane. RESULTS: Five hundred fifty-one systematic reviews, including 250 meta-analyses, of interventions addressing supportive care needs, were included. Most reviews focused on interventions to address the physical and psychosocial needs of individuals with few reviews identified to address practical needs. Interventions using mental health therapies and physical activity were most commonly used to address all supportive care needs, followed by the use of pharmaceutical and medical devices, complementary and alternative therapies, information and education resources, dietary information and specific spirituality and return-to-work interventions. CONCLUSION: This scoping review of reviews presents the first broad overview of the literature addressing the supportive care needs of people living with or beyond cancer. It provides a database that health service providers can search to identify appropriate interventions. Results highlight specific research gaps, particularly for practical needs, where reviews are needed. It highlights where a substantial evidence base exists that researchers and policy-makers can consider when implementing interventions.
Asunto(s)
Neoplasias , Adulto , Niño , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , EspiritualidadRESUMEN
PURPOSE: To investigate if comorbidity predicts mortality and functional impairment in middle-aged individuals with cancer (50-64 years) as compared to older individuals. METHODS: A prospective cohort study. Outcomes were mortality and functional impairment at 5 years follow-up. Comorbidity was assessed using adjusted Charlson comorbidity index and polypharmacy (≥ 5 drugs) as surrogate for comorbidity. Multivariate Cox-proportional hazards and binary logit models were used to assess the risk of 5-year mortality and functional impairment respectively. RESULTS: We included 477 middle-aged (50-64 years) and 563 older (65 + years) individuals with cancer. The prevalence of comorbidity (at least one disease in addition to cancer) was 29% for middle-aged and 45% for older individuals, with polypharmacy observed in 15% and 31% respectively. Presence of ≥ 3 comorbidities was associated with nearly three times as high a risk of mortality in middle-aged individuals (HR 2.97, 95% CI: 1.43-6.16). In older individuals, the HR was 1.7 (95% CI 1.1-2.8). Polypharmacy was associated with a higher risk of mortality in middle-aged (HR 2.35, 95% CI 1.32-4.16) but not in older individuals (HR 1.2, 95% CI 0.9-1.8). Polypharmacy was associated with the four time the risk of functional impairment in middle-aged (OR 4.0, 95% CI 1.59-10.06) and older individuals (OR 4.4, 95% CI 1.6-11.7). CONCLUSION: This study of middle-aged and older adults with cancer shows that comorbid disease is common in younger and older individuals with cancer and are associated with inferior outcomes. Assessment and management of comorbidity should be a priority for cancer care across all age groups.
Asunto(s)
Neoplasias , Anciano , Comorbilidad , Humanos , Persona de Mediana Edad , Neoplasias/epidemiología , Polifarmacia , Prevalencia , Estudios ProspectivosRESUMEN
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.
Asunto(s)
Supervivientes de Cáncer , Neoplasias , Australia , Técnica Delphi , Humanos , Neoplasias/terapia , Proyectos de Investigación , Encuestas y CuestionariosRESUMEN
PURPOSE: To evaluate the implementation of a web-based system of screening for symptoms and needs in people with diverse cancers in a general hospital in Australia. METHODS: This was a prospective, single-arm, pragmatic intervention study. After local adaptation of an online portal and training, cancer nurses were asked to register patients to screen via the portal in clinic or at home. Symptoms were scored according to severity, and scores above cut-off were reported to nurses for assessment and management, according to best practice. RESULTS: Fifteen nurses working across diverse tumour types agreed to approach patients for screening. Of these, 7 nurses approached 68 patients, with 5 approaching more than 1 during the 7-month study period. Forty-seven (69%) patients completed screening, and 22 rescreened at least once. At first screening, 33 (70%) patients reported at least one symptom, most commonly tiredness (n = 27; 57%), reduced wellbeing (n = 24; 51%) and drowsiness (n = 17; 36%). Of the total 75 screens undertaken during the study, 56 (75%) identified at least one symptom, and 22 (29%) identified at least one severe symptom. All patients with a positive first screen were followed up by a nurse assessment and intervention-mostly reassurance (n = 19, 59%) or referral to another health professional (n = 11, 34%). CONCLUSION: Screening for symptoms and needs using a web-based portal identified many unmet needs, but the uptake of this intervention by nurses and patients was lower than expected.
Asunto(s)
Detección Precoz del Cáncer , Neoplasias , Humanos , Estudios Prospectivos , Medición de Resultados Informados por el Paciente , InternetRESUMEN
INTRODUCTION: Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are well-positioned to foster and endorse best practice. METHODS: Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as "people affected by cancer". Recruitment to an online cross-sectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies. RESULTS: The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as 'patient' from a set of defined terms; however, this only accounted for 49-67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%). CONCLUSIONS: This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.
Asunto(s)
Neoplasias , Participación del Paciente , Humanos , Femenino , Masculino , Estudios Transversales , Comunicación , Neoplasias/terapia , Derivación y ConsultaRESUMEN
PURPOSE: Continuing employment or returning to work (RTW) as a cancer survivor can be meaningful and financially necessary, yet challenging. However, there is a lack of qualitative research on RTW experiences and financial wellbeing of people with advanced colorectal cancer (CRC-A). This study aimed to fill this gap. METHODS: Adults treated for CRC-A were recruited 0.5-2 years post-surgery (or post-diagnosis of CRC-A for palliative chemotherapy participants). Semi-structured telephone interviews, exploring RTW and finances, were subjected to framework analysis. Demographic, clinical, and quality of life data (FACT-C, Distress Thermometer, COST measure) were collected to characterise the sample and inform the framework analysis. RESULTS: Analysis of 38 interviews revealed five overarching themes: work as a struggle, work as my identity, work as my saviour, work as a financial necessity, and employer and colleague response. Many survivors with CRC-A desired to, and had the capacity to, continue work or RTW, yet faced unique challenges from compounded stigma of both cancer and toileting issues. Inability to RTW negatively impacted financial and psychosocial wellbeing. Workplace support was an important facilitator of RTW. CONCLUSION: For survivors with CRC-A, continuing or RTW is fraught with challenges, including physical functioning challenges, financial anxiety, and unsupportive workplace environments. Survivors require psychosocial, financial, and employer support to manage these difficulties. This paper recommends a multiprong approach, including education programmes (facilitated through workers' union groups, human resource institutions, and/or large consumer CRC groups) and policies, to support workers and for employers to understand the unique challenges of employees with CRC-A.
Asunto(s)
Supervivientes de Cáncer , Neoplasias Colorrectales , Adulto , Humanos , Supervivientes de Cáncer/psicología , Calidad de Vida , Empleo/psicología , Sobrevivientes/psicología , Investigación Cualitativa , Lugar de Trabajo/psicologíaRESUMEN
PURPOSE: To examine the perspectives of medical and nursing health professionals concerning their roles and responsibilities in providing dietary and exercise advice to cancer survivors, and referrals to allied health professionals. METHODS: An integrative review. PubMed, CINAHL, PsycINFO, Embase, Web of Science databases, and bibliographies of relevant studies were searched from December 2011 to June 2021. All studies were eligible for inclusion. The Mixed-Methods Appraisal Tool (MMAT) was used to critically appraise included studies. Data were extracted and synthesised regarding the perspectives of medical and nursing health professionals on their roles, responsibilities, barriers, and facilitators. RESULTS: Twenty-one studies involving 3401 medical and nursing health professionals and 264 cancer survivors of diverse cancer types were included. Ten quantitative, nine qualitative, and two mixed-methods studies were eligible. All included studies met at least 80% of the quality criteria in the MMAT. Major findings include the following: (1) medical and nursing health professionals were unclear on their roles in providing dietary and exercise advice to cancer survivors but agreed they play a key role in referrals to dietitians and exercise professionals; (2) most cancer survivors valued the involvement of their general practitioner when receiving dietary and exercise advice. CONCLUSION: Although medical and nursing health professionals understand that referrals to allied health professionals form part of their role, there is a lack of clarity regarding their roles to provide dietary and exercise advice to cancer survivors. Future studies should address barriers and facilitators of dietary and exercise advice and referral by medical and nursing health professionals.