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Efficacy and cost-utility of the eHealth self-management application 'Oncokompas', helping partners of patients with incurable cancer to identify their unmet supportive care needs and to take actions to meet their needs: a study protocol of a randomized controlled trial.

ABSTRACT: BACKGROUND:Incurable cancer does not only affect patients, it also affects the lives of their partners. Many partners take on caregiving responsibilities. The burden of these caregiving tasks are often associated with physical, psychological, and social difficulties and many partners have unmet supportive care needs. Oncokompas is an eHealth self-management application to support partners in finding and obtaining optimal supportive care, tailored to their quality of life and personal preferences. A randomized controlled trial will be carried out to determine the efficacy and cost-utility of Oncokompas. METHODS:A total of 136 adult partners of patients with incurable cancer will be included. Partners will be randomly assigned to the intervention group, which directly gets access to Oncokompas, or the waiting-list control group, which gets access to Oncokompas after three months. The primary outcome measure is caregiver burden. Secondary outcome measures comprise self-efficacy, health-related quality of life, and costs. Measures will be assessed at baseline, two weeks after randomization, and three months after the baseline measurement. DISCUSSION:This study will result in evidence on the efficacy and cost-utility of Oncokompas among partners of patients with incurable cancer, which might lead to implementation of Oncokompas as a health service for partners of patients with incurable cancer. TRIAL REGISTRATION:Netherlands Trial Register, NTR 7636. Registered on 23 November 2018.

SUBMITTER: Schuit AS

PROVIDER: S-EPMC6995084 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Efficacy and cost-utility of the eHealth self-management application 'Oncokompas', helping partners of patients with incurable cancer to identify their unmet supportive care needs and to take actions to meet their needs: a study protocol of a randomized controlled trial.

Schuit Anouk S AS Holtmaat Karen K Hooghiemstra Nienke N Jansen Femke F Lissenberg-Witte Birgit I BI Coupé Veerle M H VMH Verdonck-de Leeuw Irma M IM

Trials 20200131 1

<h4>Background</h4>Incurable cancer does not only affect patients, it also affects the lives of their partners. Many partners take on caregiving responsibilities. The burden of these caregiving tasks are often associated with physical, psychological, and social difficulties and many partners have unmet supportive care needs. Oncokompas is an eHealth self-management application to support partners in finding and obtaining optimal supportive care, tailored to their quality of life and personal pre ...[more]

PMID: 32005280

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Project description:BACKGROUND:Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. METHODS:Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. RESULTS:Participants had a mean age of 57?years (SD 13). Most were male (n?=?10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. CONCLUSIONS:To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

Project description:ImportancePatients with cancer experience multiple supportive care needs (eg, coping and financial counseling) that, if not addressed, may result in poor clinical outcomes. Limited work has assessed the factors associated with unmet needs in large and diverse samples of ambulatory oncology patients.ObjectiveTo characterize the factors associated with unmet supportive care needs among ambulatory oncology patients and to assess whether such needs were associated with emergency department (ED) visits and hospitalizations.Design, setting, and participantsBetween October 1, 2019, and June 30, 2022, cross-sectional retrospective analyses were performed in a large and diverse ambulatory cancer population via My Wellness Check, an electronic health record (EHR)-based supportive care needs and patient-reported outcomes (PROs) screening and referral program.Main outcomes and measuresDemographic characteristics, clinical characteristics, and clinical outcomes were extracted from EHRs. Data on PROs (ie, anxiety, depression, fatigue, pain, and physical function), health-related quality of life (HRQOL), and supportive care needs were also collected. Logistic regressions examined factors associated with unmet needs. Cumulative incidence of ED visits and hospitalizations were assessed by Cox proportional hazards regression models adjusting for covariates.ResultsThe 5236 patients in the study had a mean (SD) age of 62.6 (13.1) years and included 2949 women (56.3%), 2506 Hispanic or Latino patients (47.9%), and 4618 White patients (88.2%); 1370 patients (26.2%) indicated Spanish as their preferred language, according to their EHR. A total of 940 patients (18.0%) reported 1 or more unmet needs. Black race (adjusted odds ratio [AOR], 1.97 [95% CI, 1.49-2.60]), Hispanic ethnicity (AOR, 1.31 [95% CI, 1.10-1.55]), 1 to 5 years after diagnosis (AOR, 0.64 [95% CI, 0.54-0.77]), more than 5 years after diagnosis (AOR, 0.60 [95% CI, 0.48-0.76]), anxiety (AOR, 2.25 [95% CI, 1.71-2.95]), depression (AOR, 2.07 [95% CI, 1.58-2.70]), poor physical function (AOR, 1.38 [95% CI, 1.07-1.79]), and low HRQOL scores (AOR, 1.89 [95% CI, 1.50-2.39]) were associated with greater unmet needs. Patients with unmet needs had a significantly higher risk of ED visits (adjusted hazard ratio [AHR], 1.45 [95% CI, 1.20-1.74]) and hospitalizations (AHR, 1.36 [95% CI, 1.13-1.63]) relative to patients without unmet needs.Conclusions and relevanceIn this cohort study of ambulatory oncology patients, unmet supportive care needs were associated with worse clinical outcomes. Patients from racial and ethnic minority groups and those with greater emotional or physical burden were more likely to have 1 or more unmet needs. Results suggest that addressing unmet supportive care needs may be crucial for improving clinical outcomes, and targeted efforts should focus on specific populations.

Project description:Patients with cirrhosis have significant physical, psychological, and practical needs. We documented patients' perceived need for support with these issues and the differences with increasing liver disease severity, etiology, and age. Using the supportive needs assessment tool for cirrhosis (SNAC), we examined the rate of moderate-to-high unmet needs (Poisson regression; incidence rate ratio [IRR]) and the correlation between needs and sociodemographic/clinical characteristics (multivariable linear regression) in 458 Australians adults with cirrhosis. Primary liver disease etiology was alcohol in 37.6% of patients, chronic viral hepatitis C in 25.5%, and nonalcoholic fatty liver disease (NAFLD)/nonalcoholic steatohepatitis (NASH) in 23.8%. A total of 64.6% of patients had Child-Pugh class A cirrhosis. Most patients (81.2%) had at least one moderate-to-high unmet need item; more than 25% reported a moderate-to-high need for help with "lack of energy," "sleep poorly," "feel unwell," "worry about … illness getting worse (liver cancer)," "have anxiety/stress," and "difficulty with daily tasks." Adjusting for key sociodemographic/clinical factors, patients with Child-Pugh C had a greater rate of "practical and physical needs" (vs. Child-Pugh A; IRR = 2.94, 95% confidence interval [CI] 2.57-3.37), patients with NAFLD/NASH had a greater rate of needs with "lifestyle changes" (vs. alcohol; IRR = 1.81, 95% CI 1.18-2.77) and "practical and physical needs" (IRR = 1.43, 95% CI 1.23-1.65), and patients aged ≥65 years had fewer needs overall (vs. 18-64 years; IRR = 0.70, 95% CI 0.64-0.76). Higher overall SNAC scores were associated with Child-Pugh B and C (both P < 0.001), NAFLD/NASH (P = 0.028), patients with "no partner, do not live alone" (P = 0.004), unemployment (P = 0.039), ascites (P = 0.022), and dyslipidemia (P = 0.024) compared with their counterparts. Conclusion: Very high levels of needs were reported by patients with cirrhosis. This information is important to tailor patient-centered care and facilitate timely interventions or referral to support services.

Project description:Key summary points Aim To assess the impact on the older population of policies to decrease the overall impact of the COVID-19 pandemic in Europe. Findings Ageism has occurred during the COVID-19 pandemic. Message Analysis of the effects of the COVID-19 pandemic on the older population will help us to develop fairer and more inclusive policies in the future. Purpose The United Nations (UN) has published a Policy Brief on the impact of the Coronavirus Disease 2019 (COVID-19) that identifies policies and responses to protect older adults. Our objective was to summarize actions, health policies and clinical guidelines adopted by six European countries (Belgium, France, Italy, Poland, Spain and United Kingdom) during the pandemic, and to assess the impact of national policies on reducing adverse effects of the COVID-19 pandemic in older populations. Methods Reports by geriatricians on the measures and actions undertaken by governmental institutions in each country between March and July 2020, as well as the role of primary care during the pandemic, covered three areas: (a) general health strategies related to the pandemic; (b) impact of COVID-19 on health inequity; and (c) initiatives and challenges for the COVID-19 pandemic and beyond. Results In the six countries, COVID-19 mortality in nursing homes ranged from 26 to 66%. Although all countries endorsed the World Health Organization general recommendations, the reports identified the lack of harmonized European guidelines and policies for nursing homes, with competencies transferred to national (or regional) governments. All countries restricted visits in nursing homes, but no specific action plans were provided. The role of primary care was limited by the centralization of the crisis in hospital settings. Conclusions The older population has been greatly affected by COVID-19 and by the policies initiated to control its spread. The right to health and dignity are transgenerational; chronological age should not be the sole criterion in policy decisions.

Dataset Information

Efficacy and cost-utility of the eHealth self-management application 'Oncokompas', helping partners of patients with incurable cancer to identify their unmet supportive care needs and to take actions to meet their needs: a study protocol of a randomized controlled trial.

Publications

Efficacy and cost-utility of the eHealth self-management application 'Oncokompas', helping partners of patients with incurable cancer to identify their unmet supportive care needs and to take actions to meet their needs: a study protocol of a randomized controlled trial.

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