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

BACKGROUND: End-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. OBJECTIVE: The 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. METHODS: The 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. RESULTS: Ethical 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. CONCLUSIONS: The 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 IDENTIFIER: RR1-10.2196/10515.

[Palliative care support teams and the commitment of primary care teams to terminally ill patients in their homes]. / Equipos de soporte de cuidados paliativos y dedicación de los equipos de atención primaria a pacientes en situación terminal en sus domicilios.

OBJECTIVE: To find out if the activity of palliative care support teams (PCST) does not negatively influences the performance of the primary care "care of terminally ill patients" service. PARTICIPANTS: Terminally ill patients cared for at home. DESIGN: Multicentre observational study. MAIN MEASUREMENTS: The observed variable is the increase in the number of registered patients in primary care, and the number of patients covered between the years 2002 and 2003 and the 4 intervention variables are: total visits, joint visits, assessments, and teaching sessions. RESULTS: The number of patients covered in 2002 was 41.19%, increasing to 45.44% in 2003. The activity rate of the PCST for each 100 000 inhabitants was 526 home visits in 2003, 86.15 joint visits, 313.68 professional assessments, and 23.14 teaching sessions. The joint visits and the teaching sessions were strongly associated with an improvement in the coverage of primary care (Pearson correlation of 0.784 and 0.759, respectively). The total visits were moderately associated (0.525) and the assessments were weakly associated (0.245). CONCLUSIONS: Joint visits and teaching sessions of a PCST are associated to an increase in the activity of primary care teams. Assessments and total visits did not have a negative influence.

Equipos de soporte de cuidados paliativos y dedicación de los equipos de atención primaria a pacientes en situación terminal en sus domicilios / Palliative care support teams and the commitment of primary care teams to terminally ill patients in their homes

Objetivo. Comprobar si la actividad de los equipos de soporte de cuidados paliativos (ECP) influye negativamente en el cumplimiento del servicio de «atención a pacientes terminales» en atención primaria. Participantes. Pacientes en situación terminal atendidos en el domicilio. Diseño. Estudio observacional, multicéntrico. Mediciones principales. La variable observada es el aumento en el número de pacientes registrados en atención primaria, y la cobertura de cartera entre los años 2002 y 2003 y las 4 variables de intervención son: visitas totales, visitas conjuntas, asesorías y sesiones docentes. Resultados. La cobertura de cartera en el año 2002 fue del 41,19%, aumentando al 45,44% en 2003. La tasa de actividad de los ECP por cada 100.000 habitantes en 2003 fue de 526 visitas a domicilio; 86,15 visitas conjuntas; 313,68 asesorías a profesionales y 23,14 sesiones docentes. Las visitas conjuntas y las sesiones docentes se asociaron fuertemente con una mejora de cartera de atención primaria (correlación de Pearson de 0,784 y 0,759, respectivamente). Las visitas totales tuvieron una asociación moderada (0,525) y las asesorías, una asociación débil (0,245). Conclusiones. Las visitas conjuntas y las sesiones docentes de un ECP se asocian con un aumento de la actividad de los equipos de atención primaria. Asesorías y visitas totales no influyen negativamente

Objective. To find out if the activity of palliative care support teams (PCST) does not negatively influences the performance of the primary care "care of terminally ill patients" service. Participants. Terminally ill patients cared for at home. Design. Multicentre observational study. Main measurements. The observed variable is the increase in the number of registered patients in primary care, and the number of patients covered between the years 2002 and 2003 and the 4 intervention variables are: total visits, joint visits, assessments, and teaching sessions. Results. The number of patients covered in 2002 was 41.19%, increasing to 45.44% in 2003. The activity rate of the PCST for each 100 000 inhabitants was 526 home visits in 2003, 86.15 joint visits, 313.68 professional assessments, and 23.14 teaching sessions. The joint visits and the teaching sessions were strongly associated with an improvement in the coverage of primary care (Pearson correlation of 0.784 and 0.759, respectively). The total visits were moderately associated (0.525) and the assessments were weakly associated (0.245). Conclusions. Joint visits and teaching sessions of a PCST are associated to an increase in the activity of primary care teams. Assessments and total visits did not have a negative influence