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Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study.

ABSTRACT: Objective: Supportive care needs in glioma patients often remain unrecognized, and optimization in assessment is required. First, we aimed at assessing the support needed using a simple structured questionnaire. Second, we investigated the psychosocial burden and support requested from caregivers. Methods: Patients were assessed at three centers during their outpatient visits. They completed the Distress Thermometer (DT; score ≥ 6 indicated significant burden in brain tumor patients), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30+BN20, and the Patients' Perspective Questionnaire (PPQ) that assessed psychosocial distress as well as support requested and received by patients for specific domains (e.g., family, doctor, and mobile care). In each subgroup, patients' caregivers were assessed simultaneously by a questionnaire developed for the study. Multivariate backward logistic regressions were performed for investigating predictors of patients' request for support. Results: Assessments were conducted for 232 patients. Most patients (82%) had a high-grade glioma and a mean age of 52 years (range 20-87). The male to female ratio was 1.25:1. According to the PPQ results, 38% (87) of the patients felt depressed; 44% (103), anxious; and 39% (91), tense/nervous. Desired support was highest from doctors (59%) and psychologists (19%). A general request for support was associated with lower global health status (p = 0.03, odds ratio (OR) = 0.96, 95% CI: 0.92-0.99) according to EORTC QLQ-C30. Most of the assessed caregivers (n = 96) were life partners (64%; n = 61) who experienced higher distress than the corresponding patients (caregivers: 6.5 ± 2.5 vs. patients: 5.3 ± 2.4). When patients were on chemotherapy, caregivers indicated DT ≥ 6 significantly more frequently than patients themselves (p = 0.02). Conclusion: Our data showed that glioma patients and their caregivers were both highly burdened. The PPQ allowed us to evaluate the psychosocial support requested and perceived by patients, detect supportive care needs, and provide information at a glance. Patients in poorer clinical condition are at risk of having unmet needs. The caregivers' burden and unmet needs are not congruent with the patients' need for support. In particular, caregivers of patients on chemotherapy were more highly burdened than patients themselves.

SUBMITTER: Renovanz M

PROVIDER: S-EPMC6141995 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundWomen diagnosed with gynaecological cancer experience supportive care needs that require care provision to reduce the impact on their lives. International evidence suggests supportive care needs of women with gynaecological cancer are not being met and provision of holistic care is a priority area for action. Knowledge on gynaecological cancer supportive care needs is limited, specifically comparison of needs and cancer gynaecological subtype. Our aim was to identify supportive care needs of Western Australian women experiencing gynaecological cancer, their satisfaction with help and explore associations between participant's demographic characteristics and identified needs.MethodsA cross-sectional design incorporating a modified version of the Supportive Care Needs Survey - short form (SCNS-SF34) assessed 37 supportive care needs under five domains in conjunction with demographic data. Three hundred and forty three women with gynaecological cancer attending a tertiary public referral hospital completed the survey over 12 months. Statistical analysis was performed using the R environment for statistical computing. A linear regression model was fitted with factor scores for each domain and demographic characteristics as explanatory variables.ResultsThree hundred and three women (83%) identified at least one moderate or high level supportive care need. The five highest ranked needs were, 'being informed about your test results as soon as feasible' (54.8%), 'fears about cancer spreading' (53.7%), 'being treated like a person not just another case' (51.9%), 'being informed about cancer which is under control or diminishing (that is, remission)' (50.7%), and 'being adequately informed about the benefits and side-effects of treatments before you choose to have them' (49.9%). Eight of the top ten needs were from the 'health system and information' domain. Associations between supportive care items and demographic variables revealed 'cancer type', and 'time since completion of treatment' had no impact on level of perceived need for any domain.ConclusionsWestern Australian women with gynaecological cancer identified a high level of supportive care needs. The implementation of a supportive care screening tool is recommended to ensure needs are identified and care is patient-centred. Early identification and management of needs may help to reduce the burden on health system resources for managing ongoing needs.

Project description:BACKGROUND:The world is facing many socio-demographic changes, such as an increased average life expectancy and the presence of chronic and non-communicable diseases, which in turn, leads to an enhanced dependency on others. Consequently, the demand for informal caregivers has significantly increased during the past few years. Caring for a dependent person is linked to a series of burdens that often leads to physical, psychological and emotional difficulties. Taking into consideration the difficulties faced by informal caregivers, knowing in which areas of functioning they need more guidance may help to relieve their burden. Therefore, the main goal of this study is to better understand the needs and competencies of the informal caregiver when caring for a dependent person in the different self-care domains. METHODS:This cross-sectional study used a questionnaire administered on a single occasion by face-to-face interview. Descriptive and inferential statistics alongside non-parametric statistical techniques such as the Mann-Whitney test and Spearman's correlation were used. RESULTS:The average age of the 143 informal caregivers is 58 years old, with the youngest in our sample being 21 years of age. Most of them are female, and 50% of them are children taking care of one of their parents. Most of the dependent people are completely dependent in the areas of comfort and hygiene (53.8%) and medication management (55.9%). The female informal caregivers see themselves as having more competencies in sanitary hygiene than the male ones, with no significant differences in their competencies' perception in the other areas of self-care. Older caregivers see themselves as less competent in certain areas of self-care such as feeding, mobility, transfers, medication and symptoms management and communication. Most of the information given to the informal caregiver is about the disease (82.3%) and the medication management (80.4%). There are still a lot of areas of self-care, where no information, or almost none, is given to the informal caregivers. CONCLUSIONS:Before home discharge of a dependent person, it is important to acknowledge the needs and competencies of the informal caregiver, to capacitate them in looking after their relatives, to help decrease their burden and consequently, decrease the number of hospital readmissions.

Project description:ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision.DesignCross-sectional questionnaire survey of patients with pancreatic cancer in the UK.SettingIndividuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018.Participants274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British.Primary outcome measuresExperiences of communication and information; involvement in treatment decisions; supportive care needs.ResultsCommunication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease.ConclusionsPatients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

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Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study.

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