Community Based Participatory Research For The Development of a Compassionate Community: The Case of Getxo Zurekin.

INTRODUCTION: In the face of a growing ageing population and rising care needs, compassionate communities seek to visualize the community as an equal partner in the complex task of providing quality social and health care at the end of life. DESCRIPTION: Getxo Zurekin is a social innovation example for the creation of a compassionate community in Getxo, one of the most populated cities in the province of Biscay, with 25.46% of its population aged over 65. Mixed methodologies have been applied, active listening and co-creation of actions and strategies towards improving care and quality of life for people and families facing advanced disease and end of life situations, with more than 80 people interviewed to conform the basis for a collective sense making. The initiative has reached more than 1,000 people in Getxo. DISCUSSION: Following a systemic approach, horizontal relationships and cross-sectoral collaborations have allowed engaging the active involvement of local agents in the collective sense making and co- creation process. CONCLUSION: Getxo Zurekin represents an example of a participatory action research model, which has shown to be effective to meet initial targets towards creation of a compassionate community.

Hospital and outpatient models for Hematopoietic Stem Cell Transplantation: A systematic review of comparative studies for health outcomes, experience of care and costs.

The number of Hematopoietic Stem Cell Transplantations has risen in the past 20 years. The practice of outpatient Hematopoietic Stem Cell Transplantation programs is increasing in an attempt to improve the quality of patient care and reduce the demand for hospital admission. A systematic review of 29 comparative studies between in-hospital and outpatient treatment of Hematopoietic Stem Cell Transplantation, with no restriction by outpatient regime was conducted. This study aims to analyse the current evidence on the effects of the outpatient model on patient-centred outcomes, comparing both in-hospital and outpatient models for autologous and allogeneic HSCT using the Triple Aim framework: health outcomes, costs and experience of care. We found evidence on improved health outcomes and quality of life, on enhanced safety and effectiveness and on reduced overall costs and hospital stays, with similar results on overall survival rates comparing both models for autologous and allogeneic patients. We also found that the outpatient Hematopoietic Stem Cell Transplantation is a safe practice as well as less costly, it requires fewer days of hospital stay both for autologous and allogeneic transplantations. Under a situation of an increasing number of transplants, rising healthcare costs and shortages of hospital capacity, incorporating outpatient models could improve the quality of care for people requiring Hematopoietic Stem Cell Transplantation programs.

Inequalities in Health Care Experience of Patients with Chronic Conditions: Results from a Population-Based Study.

Patients' experience is an acknowledged key factor for the improvement of healthcare delivery quality. This study aims to explore the differences in healthcare experience among patients with chronic conditions according to individual sociodemographic and health-related variables. A population-based and cross-sectional study was conducted. The sample consisted of 3981 respondents of the Basque Health Survey (out of 8036 total respondents to the individual questionnaire), living in the Basque Country, aged 15 or older, self-reporting at least one chronic condition. Patient experience was assessed with the Instrument for Evaluation of the Experience of Chronic Patients questionnaire, which encompasses three major factors: interactions between patients and professionals oriented to improve outcomes (productive interactions); new ways of patient interaction with the health care system (the new relational model); and the ability of individuals to manage their care and improve their wellbeing based on professional-mediated interventions (self-management). We conducted descriptive and regression analyses. We estimated linear regression models with robust variances that allow testing for differences in experience according to sociodemographic characteristics, the number of comorbidities and the condition (for all chronic or for chronic patients' subgroups). Although no unique inequality patterns by these characteristics can be inferred, females reported worse global results than males and older age was related to poorer experience with the new relational model in health care. Individuals with lower education levels tend to report lower experiences. There is not a clear pattern observed for the type of occupation. Multimorbidity and several specific chronic conditions were associated (positive or negatively) with patients' experience. Health care experience was better in patients with greater quality of life. Understanding the relations among the patients' experience and their sociodemographic and health-related characteristics is an essential issue for health care systems to improve quality of assistance.

Factors Influencing Healthcare Experience of Patients with Self-Declared Diabetes: A Cross-Sectional Population-Based Study in the Basque Country.

BACKGROUND: Diabetes affects more than 400 million people around the world. Few published studies incorporate questionnaires that comprehensively cover every aspect of a patient's experience of healthcare. This study analyzes potential differences in the healthcare experience for patients with diabetes based on their sociodemographic, economic, and health-related characteristics from a comprehensive viewpoint in an integrated delivery system. METHODS: We used data from the 2018 Basque Health Survey, which includes a questionnaire for the measurement of the experiences of patients with chronic problems. We present descriptive and regression analyses to explore differences by sociodemographic, economic, and health-related characteristics of patients' experiences with different healthcare services. RESULTS: Having diabetes plus other comorbidities significantly decreases the quality of the experience with all healthcare services and decreases the global healthcare experience score. When comorbidities are present, the elderly seem to report better experiences than younger patients. Some differences in experience can be explained by sociodemographic and economic factors. No differences exist between conditions co-occurring with diabetes. CONCLUSION: Patients with diabetes who also suffer from other conditions report worse experiences than individuals who suffer from diabetes only. No specific conditions explain the differences in care experience.

Estudio exploratorio sobre la sexualidad en procesos de enfermedad avanzada y final de vida desde la perspectiva de los profesionales de cuidados paliativos / An exploratory study on sexuality in advanced disease and at the end of life from the perspective of palliative care professionals

INTRODUCCIÓN: La expresión de la sexualidad es un factor importante de la calidad de vida de los pacientes en situación de enfermedad avanzada y final de vida. Sin embargo, sus necesidades en relación con la sexualidad son frecuentemente desconocidas y no cubiertas por la falta de consideración, confianza y habilidades por parte de los profesionales de la salud. Este estudio exploratorio analiza la percepción de los profesionales de cuidados paliativos de cómo se hace y cómo se debería abordar la atención a la sexualidad en la práctica asistencial. MÉTODOS: Estudio cualitativo fenomenológico conducido desde un paradigma naturalista. Se realizan entrevistas semiestructuradas a 6 profesionales sanitarios en julio de 2019, atendiendo a los siguientes criterios: perfil profesional, años de experiencia, edad y género. La información se categoriza y analiza siguiendo un marco de codificación elaborado a partir de las variables identificadas previamente en la literatura y las emergentes que surgen de la lectura de las transcripciones y notas de campo. RESULTADOS: Aunque se reconoce la responsabilidad de atender la esfera de la sexualidad desde los cuidados paliativos, su abordaje queda relegado en general a un segundo plano. Cuando se hace, la atención se centra mayormente en explorar la dimensión afectiva y relacional. Entre los motivos para la falta de atención a la sexualidad se reportan la percepción de una escasa formación, la no consideración de la sexualidad en protocolos de actuación, y las limitaciones de tiempo para entablar vínculos de relación con los pacientes. Las experiencias personales y pudores impactan sobre el nivel de atención, y las normas sociales que dificultan su expresión. DISCUSIÓN: El estudio demuestra un déficit en la atención para atender todas las necesidades y esferas de la sexualidad de los pacientes. Los resultados añaden robustez a lo previamente publicado, aportando posibles estrategias para el abordaje

BACKGROUND: The expression of sexuality is an important factor in the quality of life of patients with advanced disease or at the end of life. However, necessities in the area of sexuality are scarcely covered due to lack of consideration, capabilities, and trust of healthcare professionals. This exploratory study analyzes the perception of palliative care professionals on how sexuality is addressed, and how this should be handled in palliative care. MATERIALS AND METHODS: A phenomenological qualitative study has been carried out from a naturalistic paradigm. Semi-structured interviews were conducted with six healthcare professionals with different professional profiles, backgrounds, ages and genders in July 2019. The information has been categorized following a codification frame prepared on the basis of the previously identified variables in the literature, as well as of emergent variables arising from the transcriptions and field notes. RESULTS: Sexuality is recognized as an essential aspect of all human beings, and the responsibility to address needs in this area from a palliative care standpoint is assumed. However, its care is generally relegated to the sidelines. When addressed, it focuses largely on the affective and relational dimensions of people. Perceived lack of training on the matter, absence of specific guidelines in care plans, and time limits to building trust relations with patients are reported as reasons for the scarce attention sexuality draws in healthcare. Personal experiences and shame affect the level of care provided in relation to sexuality, as do social norms and taboos that hinder the expression of issues related with sexuality in healthcare. DISCUSSION: This study reveals failure to satisfy patient needs in this regard from a comprehensive perspective. Our results add robustness to the existing literature in this knowledge area, and allow to continue developing strategies for adding value to palliative care in addressing situations and needs relevant to patients

Direct Cost of Parkinson's Disease: A Real-World Data Study of Second-Line Therapies.

Parkinson's disease is one of the main reasons for neurological consultation in Spain. Due to the nature of the disease, it impacts patients, families, and caregivers. Parkinson's disease is a degenerative disease with no cure, although second-line therapies have recently improved the quality of life of patients in advanced stages. The aim of this study was to analyse the costs of the following therapies: deep brain stimulation (DBS), continuous duodenal levodopa/carbidopa infusion (CDLCI), and continuous subcutaneous apomorphine infusion (CSAI). The methodology used was based on real-world data obtained from an integrated healthcare organization in the Basque Country from 2016 to 2018. This bottom-up retrospective approach only took into account the healthcare perspective. The results revealed the annual cost over 3 years and the projected cost for an additional 2 years. The total costs for 5 years of treatment were as follows: €53,217 for DBS, €208,163 for CDLCI, and €170,591 for CSAI. These costs are in line with those found in the available literature on the subject. Additionally, the analysis provided details of the different costs incurred during intervention with the therapies and compared the costs to those reported in other studies.

Solidarity against healthcare access restrictions on undocumented immigrants in Spain: the REDER case study.

BACKGROUND: In the context of public expenditure reduction and cuts, in 2012, the Spanish government approved the RDL 16/2012, which significantly affected the core values of the national health system. The measure particularly affected undocumented immigrants over 18 years of age, excluding them from accessing the full range of healthcare services in Spain, except for emergency care. In 2014, Red de Denuncia y Resistencia al RDL 16/2012 (REDER) was created as a public awareness and resistance network to defend universal access to healthcare and to stop its infringement. This study aims to analyse the social impact of REDER as a solidarity movement in response to the exclusion of undocumented immigrants from their universal right to health. METHODS: Qualitative research methodologies were used for the research. Data were collected between November 2017 and December 2017, using eight semi-structured interviews with key informants from the main REDER stakeholders. Additionally, key publications, documents, and presentations of researchers and experts in the field were analysed. For data analysis, a framework extracted from the literature on exclusionary and transformative dimensions of solidarity was used to identify barriers and drivers in REDER's intervention. RESULTS: From its creation to the present, REDER has been able to achieve many of its objectives to defend the right to medical care of groups in irregular situations, contributing to the identification of 4,755 cases of discrimination in healthcare access and helping solve over 90% of these cases by delivering either healthcare assistance or administrative support. REDER has also played an important role in: stimulating social activation and empowering citizens to claim their fundamental rights, organising actions against restrictions on accessibility and creating synergies to restore universal healthcare coverage. CONCLUSIONS: REDER has been shown to be effective in leading the defence of universal healthcare rights, and some achievements in the years following 2012 could be directly attributed to the work done by the network, such as the elimination of legal requirements to obtain health cards or the reduction of the minimum time required to access healthcare. Despite context particularities, the initiatives and main actions of this network may be implemented in other settings that are facing similar limitations to healthcare access, in order to address injustices and promote solidarity.