Psychosocial Care Needs of Melanoma Survivors: Are They Being Met?
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ABSTRACT:
SUBMITTER: Fischbeck S
PROVIDER: S-EPMC4546620 | biostudies-other | 2015
REPOSITORIES: biostudies-other
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Project description:Importance:Understanding supportive care needs in patients with cancer is important for developing approaches that enhance quality of life and promote satisfaction with care. Objective:To characterize the nature and frequency of sociodemographic, medical, and psychosocial factors associated with unmet needs in patients with uveal melanoma 1 week and 3 months after diagnosis. Design, Setting, and Participants:This 3-month, prospective, longitudinal survey study was conducted at a university-based ophthalmology practice from June 1, 2007, to July 1, 2011. Data were analyzed in April 2017. Consecutive patients (n?=?429) scheduled for diagnostic evaluation for an intraocular abnormality were assessed for eligibility. Participants were ineligible (n?=?25) if they were younger than 18 years, had previous advanced cancer, or evidenced cognitive impairment. Of the patients who provided informed consent (n?=?306), those subsequently diagnosed with uveal melanoma by an ophthalmologist (n?=?107) were included in the analysis. Main Outcomes and Measures:Unmet needs (ie, desire for help in psychological, physical, health information, communication, or social domains) were assessed using the Cancer Needs Questionnaire. Multivariable regression analyses determined factors associated with unmet need severity across 3 months. Results:One hundred seven patients (58 [54%] men; mean [SD] age, 59.0 [12.8] years) completed the baseline assessment. At 1 week after diagnosis, nearly all patients (85 of 86 [99%]) expressed at least 1 unmet need, as did 68 of 79 (86%) 3 months later. The most frequently endorsed needs were in the health information and psychological domains. Patients' unmet needs declined significantly over 3 months (mean [SD] change, -10.0 [14.4]; 95% CI, -6.4 to -13.6; t?=?-5.6). Sociodemographic and medical characteristics were unrelated to unmet need severity. However, higher prediagnosis instrumental social support (b?=?-0.2; 95% CI, -0.3 to -0.1; z?=?-2.8) and lower neuroticism (b?=?0.3; 95% CI, 0.1-0.5; z?=?2.9) predicted lower unmet need severity 1 week after diagnosis. Having a smaller social network predicted lower unmet need severity 3 months after diagnosis (b?<?0.1; 95% CI, <0.1 to <0.1; z?=?2.4) as well as a decline in needs from diagnosis to 3 months later (b?<?0.1; 95% CI, <0.1 to <0.1; z?=?2.3). Conclusions and Relevance:Within 1 week after diagnosis and 3 months later, most patients with uveal melanoma cited important health information and psychological needs. These findings suggest that prior to or at diagnosis, the severity of such needs and psychosocial factors that may be associated can be identified for proactive supportive intervention.
| S-EPMC5876854 | biostudies-literature
Project description:IntroductionLife-threatening critical illness affects over a quarter of a million children and adolescents (0-18 years old) annually in the USA and the UK. Death from critical illness is rare; however, survivors and their families can be exposed to a complex array of negative physical, psychological and social problems. Currently, within the literature, there is a distinct paucity of child and adolescent survivor self-reports, thus limiting our understanding of how survivors perceive this adversity and subsequently cope and grow in the long-term following their critical illness. This study aims to explore and understand psychosocial well-being and needs of critical illness survivors, 6-20 months post paediatric intensive care admission.Methods and analysisA longitudinal, qualitative approach will provide a platform for a holistic and contextualised exploration of outcomes and mechanisms at an individual level. Up to 80 participants, including 20 childhood critical illness survivors and 60 associated family members or health professionals/teachers, will be recruited. Three interviews, 7-9 weeks apart, will be conducted with critical illness survivors, allowing for the exploration of psychosocial well-being over time. A single interview will be conducted with the other participants enabling the exploration of contextual information and how psychosocial well-being may inter-relate between critical illness survivors and themselves. A 'tool box' of qualitative methods (semi-structured interviews, draw and tell, photo-elicitation, graphic-elicitation) will be used to collect data. Narrative analysis and pattern matching will be used to identify emergent themes across participants.Ethics and disseminationThis study will provide an insight and understanding of participants' experiences and perspectives of surviving critical illness in the long term with specific relation to their psychosocial well-being. Multiple methods will be used to ensure that the findings are effectively disseminated to service users, clinicians, policy and academic audiences. The study has full ethical approval from the East Midlands Research Ethics Committee and has received National Health Service (NHS) governance clearance.
| S-EPMC3902363 | biostudies-literature
Project description:The interventions used in cancer-survivorship care do not always address outcomes important to survivors. This study sought to understand stakeholders' views on the key concerns of cancer survivors after treatment and the interventions needed to meet survivors' and families' psychosocial needs after completing cancer treatment. We conducted a descriptive qualitative study using semi-structured interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) from across Canada. For the data analysis, we used techniques commonly employed in descriptive qualitative research, such as coding, grouping, detailing, and comparing the data. There were 44 study participants: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-/policy-makers. Stakeholder-relevant interventions to address survivors' psychosocial needs were categorized into five groups, as follows: information provision, peer support, navigation, knowledge translation interventions, and caregiver-specific supports. These findings, particularly interventions that deliver timely and relevant information about the post-treatment period and knowledge translation interventions that strive to integrate effective tools and programs into survivorship care, have implications for future research and practice.
| S-EPMC8700656 | biostudies-literature
Project description:Background: Emerging data from Africa indicates remarkably low numbers of reported COVID-19 deaths despite high levels of disease transmission. However, evolution of these trends as the pandemic progresses remains unknown. More certain are the devastating long-term impacts of the pandemic on health and development evident globally. Research tailored to the unique needs of African countries is crucial. UKCDR and GloPID-R have launched a tracker of funded COVID-19 projects mapped to the WHO research priorities and research priorities of Africa and less-resourced countries and published a baseline analysis of a living systematic review (LSR) of these projects. Methods: In-depth analyses of the baseline LSR for COVID-19 funded research projects in Africa (as of 15th July 2020) to determine the funding landscape and alignment of the projects to research priorities of relevance to Africa. Results: The limited COVID-19 related research across Africa appears to be supported mainly by international funding, especially from Europe, although with notably limited funding from United States-based funders. At the time of this analysis no research projects funded by an African-based funder were identified in the tracker although there are several active funding calls geared at research in Africa and there may be funding data that has not been made publicly available. Many projects mapped to the WHO research priorities and five particular gaps in research funding were identified, namely: investigating the role of children in COVID-19 transmission; effective modes of community engagement; health systems research; communication of uncertainties surrounding mother-to-child transmission of COVID-19; and identifying ways to promote international cooperation. Capacity strengthening was identified as a dominant theme in funded research project plans. Conclusions: We found significantly lower funding investments in COVID-19 research in Africa compared to high-income countries, seven months into the pandemic, indicating a paucity of research targeting the research priorities of relevance to Africa.
| S-EPMC7927206 | biostudies-literature
Project description:The rapid development of metastatic melanoma treatment options has significantly improved overall survival, but paralleled patient educational and supportive care resources have fallen behind. Particularly, the need for grassroots programs targeting environments outside urban centers has grown. Accordingly, an environmental scan of the Durham region in Ontario, Canada, showed the lack of melanoma-specific resources for outpatients. The goal of this study was to identify the needs of metastatic melanoma patients and survivors attending a large outpatient clinic in Durham, and then develop a patient-reviewed intervention plan. Needs were assessed in 5 domains through a melanoma-specific supportive care needs assessment survey. Among 75 surveyed melanoma patients and survivors, high-level needs were identified in 3 domains: psychological, health system information, and melanoma-specific information. Furthermore, domain-specific needs were heightened in specific sociodemographic groups. Based on these survey results, a multifaceted intervention plan was developed to mitigate future needs. The intervention plan was patient-reviewed in focus groups prior to implementation, refining the developed intervention plan.
| S-EPMC8312183 | biostudies-literature
Project description:Background:Disabled older adults' needs for help with daily activities sometimes go unmet with potentially long-term negative consequences for health and well-being. Objectives:To examine the relationship between care recipient unmet needs and (1) concerns about being a burden; (2) perceptions of caregiver burden; and (3) and caregiver self-reports of burden in community-dwelling care recipient-caregiver dyads. Research Design and Methods:Telephone surveys with 196 linked caregiver-care recipient dyads from the 2017 Pittsburgh Regional Caregiver Survey. Of 376 caregivers who gave initial permission to contact the recipient (February-July), 262 caregivers were recontacted and gave permission to attempt a care recipient survey (September-October; n = 196 completed; 74.8% response rate). In addition to the burden measures, we controlled for several covariates, including disability level, receipt of paid help, and care recipient and caregiver sociodemographics. Results:Slightly more than one fourth (27.2%) of care recipients were "very concerned" about being a burden, and 43.6% were "somewhat concerned." Care recipient concerns about being a burden (exp(B) = 1.71, 95% confidence interval [CI] exp(B) [1.15, 2.54]); and caregiver self-reported burden (exp(B) = 1.82, 95% CI exp(B) [1.17, 2.85]) were independent predictors of more care recipient unmet needs. Recipient perceptions of caregiver burden were not independently predictive. Care recipients with higher disability levels, those without paid help, and those whose caregiver was not a spouse/child also reported more unmet needs. The impact of burden on unmet needs was stronger for instrumental activities of daily living/mobility needs than for activities of daily living needs. Discussion and Implications:Potential interventions to reduce unmet needs should take a dyadic approach, focusing on reducing both care recipient perceptions of being a burden and caregiver experienced burden.
| S-EPMC6186011 | biostudies-literature
Project description:INTRODUCTION:Chemotherapy for breast cancer has been associated with cognitive problems; however, the impact of adjuvant hormone therapy is less clear. No studies have explored provider discussions about cognitive concerns or factors associated with neurocognitive treatment. This study examined cognitive problems, factors associated with having a provider discussion, and receipt of neurocognitive treatment. METHODS:Female breast cancer survivors (N=2,537) from the Sister Study and the Two Sister Study who were at least 1 year post-treatment were surveyed in 2012 about their cancer therapies (confirmed by medical records); cognitive concerns; related provider discussions; and neurocognitive treatment. A total of 2,296 women were included in the current 2014 analysis. Extensive covariate information was also ascertained for predictive multivariate models. RESULTS:The prevalence of self-reported cognitive problems after treatment was 60%. Of those reporting cognitive problems, only 37% had discussed those concerns with a provider and 15% had been treated for cognitive symptoms. The odds of reported cognitive concerns that started during and after treatment were elevated for those who received only hormone therapy and no chemotherapy (OR=1.64, 95% CI=1.15, 2.33); chemotherapy and no hormone therapy (OR=5.63, 95% CI=3.52, 9.00); or both (OR=6.33, 95% CI=4.21, 9.54) compared with those reporting neither treatment. CONCLUSIONS:The high prevalence of cognitive concerns underscores the importance of monitoring breast cancer survivors for potential neurocognitive effects of hormone and chemotherapy, discussions with survivors about those concerns, and treatment referrals. Monitoring changes over time can help to evaluate both psychosocial and neurocognitive care provided for survivors.
| S-EPMC4656130 | biostudies-literature
Project description:PurposeBreast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs.MethodsSemi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics.ResultsThere was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding.ConclusionsThis study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.
| S-EPMC8639634 | biostudies-literature
Project description:BackgroundThe number of cancer survivors is increasing due to improved treatments. Consequently, general practitioners will treat more and more cancer survivors in the upcoming years. Only little is known about the care needs of these survivors and guidelines to support general practitioners in their treatment of these patients are lacking. The aim of this study was to gain insight in the health care needs of cancer survivors in general practice.MethodsA systematic review on cancer survivors' general practice needs was conducted in PubMed, Embase and the Cochrane Library of Systematic Reviews. Eligible studies could be qualitative or quantitative studies examining cancer survivors' needs in general practice. Studies of adult survivors, with any cancer type, considered free of active disease and no longer receiving active treatment, were included. For each study a quality score was given using a form developed specifically for this study. Statements about survivors' general practice needs were collected and corresponding themes were grouped.ResultsFifteen studies were included, of which twelve were qualitative. Most mentioned general practice needs were psychosocial needs, mainly being support received form the GP, followed by a need for help with medical issues, and a need for information on cancer, recovery, late treatment effects and on adjusting to life after treatment.ConclusionsCancer survivors have different types of general practice needs that are currently not or insufficiently met. This review provides a starting point for the development of new guidelines for general practitioners to support in cancer survivorship.
| S-EPMC4031325 | biostudies-literature
Project description:ImportanceYoung women with breast cancer are increasingly choosing bilateral mastectomy (BM), yet little is known about short-term and long-term physical and psychosocial well-being following surgery in this population.ObjectiveTo evaluate the differential associations of surgery with quality of life (QOL) and psychosocial outcomes from 1 to 5 years following diagnosis.Design, setting, and participantsCohort study.SettingMulticenter, including academic and community hospitals in North America.ParticipantsWomen age ≤40 when diagnosed with Stage 0-3 with unilateral breast cancer between 2006 and 2016 who had surgery and completed QOL and psychosocial assessments.Exposures (for observational studies)Primary breast surgery including breast-conserving surgery (BCS), unilateral mastectomy (UM), and BM.Main outcomes and measuresPhysical functioning, body image, sexual health, anxiety and depressive symptoms were assessed in follow-up.ResultsOf 826 women, mean age at diagnosis was 36.1 years; most women were White non-Hispanic (86.7%). Regarding surgery, 45% had BM, 31% BCS, and 24% UM. Of women who had BM/UM, 84% had reconstruction. While physical functioning, sexuality, and body image improved over time, sexuality and body image were consistently worse (higher adjusted mean scores) among women who had BM vs BCS (body image: year 1, 1.32 vs 0.64; P < .001; year 5, 1.19 vs 0.48; P < .001; sexuality: year 1, 1.66 vs 1.20, P < .001; year 5, 1.43 vs 0.96; P < .001) or UM (body image: year 1, 1.32 vs 1.15; P = .06; year 5, 1.19 vs 0.96; P = .02; sexuality: year 1, 1.66 vs 1.41; P = .02; year 5, 1.43 vs 1.09; P = .002). Anxiety improved across groups, but adjusted mean scores remained higher among women who had BM vs BCS/UM at 1 year (BM, 7.75 vs BCS, 6.94; P = .005; BM, 7.75 vs UM, 6.58; P = .005), 2 years (BM, 7.47 vs BCS, 6.18; P < .001; BM, 7.47 vs UM, 6.07; P < .001) and 5 years (BM, 6.67 vs BCS, 5.91; P = .05; BM, 6.67 vs UM, 5.79; P = .05). There were minimal between-group differences in depression levels in follow-up.Conclusions and relevanceWhile QOL improves over time, young breast cancer survivors who undergo more extensive surgery have worse body image, sexual health, and anxiety compared with women undergoing less extensive surgery. Ensuring young women are aware of the short-term and long-term effects of surgery and receive support when making surgical decisions is warranted.
| S-EPMC7495332 | biostudies-literature