Development and Management of Networks of Care at the End of Life (the REDCUIDA Intervention): Protocol for a Nonrandomized Controlled Trial

Abstract

BackgroundEnd-of-life needs can be only partly met by formalized health and palliative care resources. This creates the opportunity for the social support network of family and community to play a crucial role in this stage of life. Compassionate communities can be the missing piece to a complete care model at the end of life.ObjectiveThe main objective of this study is to evaluate the REDCUIDA (Redes de Cuidados or Network of Care) intervention for the development and management of networks of care around people with advanced disease or at the end of life.MethodsThe study is a 2-year nonrandomized controlled trial using 2 parallel groups. For the intervention group, we will combine palliative care treatment with a community promoter intervention, compared with a control group without intervention. Participants will be patients under a community palliative care team’s supervision with and without intervention. The community promotor will deliver the intervention in 7 sessions at 2 levels: the patient and family level will identify unmet needs, and the community level will activate resources to develop social networks to satisfy patient and family needs. A sample size of 320 patients per group per 100,000 inhabitants will offer adequate information and will give the study 80% power to detect a 20% increase in unmet needs, decrease families’ burden, improve families’ satisfaction, and decrease the use of health system resources, the primary end point. Results will be based on patients’ baseline and final analysis (after 7 weeks of the intervention). We will carry out descriptive analyses of variables related to patients’ needs and of people involved in the social network. We will analyze pre- and postintervention data for each group, including measures of central tendency, confidence intervals for the 95% average, contingency tables, and a linear regression. For continuous variables, we will use Student t test to compare independent samples with normal distribution and Mann-Whitney U test for nonnormal distributions. For discrete variables, we will use Mann-Whitney U test. For dichotomous variables we will use Pearson chi-square test. All tests will be carried out with a significance level alpha=.05.ResultsEthical approval for this study was given by the Clinical Research Committee of Andalusian Health Service, Spain (CI 1020-N-17), in June 2018. The community promoter has been identified, received an expert community-based palliative care course, and will start making contacts in the community and the palliative care teams involved in the research project.ConclusionsThe results of this study will provide evidence of the benefit of the REDCUIDA protocol on the development and assessment of networks of compassionate communities at the end of life. It will provide information about clinical and emotional improvements, satisfaction, proxy burden, and health care resource consumption regarding patients in palliative care.Registered Report IdentifierRR1-10.2196/10515

A Survey of Attitudes and Beliefs about Care, Compassion and Communities Networks in Palliative Care. A Preliminary Study for the Development of a Compassionate University

“…The increase in these care networks improves the quality of life of the person, reduces the burden of the main caregiver and improves the satisfaction of patients and their families. These results are already being analyzed in a community intervention process through the RedCuida protocol for the creation and management of care networks [18,19].…”

The impact of public health palliative care interventions on health system outcomes: A systematic review

“…Of 35 studies, we identified five (14%) that specifically measured a health system outcome (Table 2) in a public health palliative care context, [36][37][38][39][40] including three studies examining this outcome as a primary endpoint. 36,37,39 The quality of these studies was classified as high, with scores ranging from 31 to 36. Two studies identified were trial design papers outlining protocols for work currently being undertaken, 37,38 meaning evidence on health service use outcomes from public health approaches was limited to the findings of three studies.…”

“…40 These studies typically involved cohorts of selected 'patients' who were seriously ill, frail, or with clinically identified vulnerabilities. This ranged from broadly people with advanced disease 37,38 including specifically advanced cancer 39 expected to be at 37 or within their last year of life, 38,40 and/or in addition: those screened as dependent for basic and instrumental daily activities (Barthel Activities of Daily Living Index Scale <3), with more than 40% of their needs unmet by community, and experiencing loneliness (ESTE score > 20 points) with a caregiver experiencing burden (Zarit Cale > 56); 37 those with unmet social and/or practical needs who are socially isolated or dependent upon just one other person to meet their needs and at having least two indicators of deteriorating health as outlined in the Supportive & Palliative Care Indicators Tool (SPICTTM) 38 ; patients clinically identified at risk of unplanned admission. 36 The commonality across the public health palliative care approaches described was the systematic leveraging of enhanced community networks of care by a centrally coordinated programme which sought to aid the person with serious illness through the linkage to and bolstering of regionally based resources.…”

“…As highlighted by others, 37 there is a lack of uniform evaluation tools or frameworks available to systemically assess these types of public health palliative care initiatives. This means it remains difficult to compare and assess the comparative effect of different interventions.…”

Researching two Compassionate Cities: study protocol for a mixed-methods process and outcome evaluation

“…changes in the patients' quality of life when involving volunteers; evaluation of a model to develop networks of care around people) instead of on the project as a whole. [15][16][17][18] Publishing study protocols of studies, including both process and outcome evaluations, helps in better understanding the development, implementation and outcomes of Compassionate Cities.…”