“Unravelling the Hidden Burden: Palliative Needs and Frailty among Complex Chronic
Patients in Primary Care”
LUISA MARÍA LEIVA HERVÁS1, Marta Castro López2, Francisco Javier Valverde Bolívar3
1Atención Primaria. Centro de Salud de Torredonjimeno, Jaen. 2Atención Primaria. Centro de Salud de Torredonjimeno, Martos. 3Unidad Docente Distrito AP Jaén-Jaén Sur. UDM AFyC, Jaén
Background: The growing presence of complex chronic patients (CCPs) and frail individuals in Primary Care reflects a demographic and epidemiological shift closely linked to the Global Burden of Disease (GBD). These patients typically present with multiple comorbidities, significant functional impairment, and frequently unmet or unidentified palliative care needs.
Objective: To assess the prevalence of frailty and palliative needs among CCPs and their association with clinical and sociodemographic indicators in a Primary Health Care Area.
Methods: Descriptive cross-sectional study in 401 patients identified as CCPs in a in a southern Spanish Primary Health Care area. Sociodemographic, clinical, and functional variables were analyzed, as well as frailty status and the identification of palliative needs. A bivariate analysis was performed to analyze the association between frailty and the variables collected.
Results: 46.6% of patients were classified as frail, 34.4% as pre-frail, and 19% as robust. 11.5% of patients were NECPAL positive, mostly frail (80.4%)
Conclusions: There is a high prevalence of frailty and palliative care needs in CCPs in PC, representing a hidden burden on the healthcare system. There is a clear need to identify these patients early and adapt comprehensive strategies to optimize care, improve quality of life, and reduce overload.
DOI: 10.20986/medpal.2025.1620/2025
Two-year experience of the “Pediatric Home Care Program for Complex Chronic Patients with Palliative Needs of the Primary Care Management of Tenerife”
Yurena Valencia Afonso1, Dinesh Lalchandani Lalchandani1, Dácil Parrilla Toribio2, Alfonso Miguel García Hernández3
1Unidad de Atención Domiciliaria Pediátrica de AP. Gerencia de Atención Primaria de Tenerife, Santa Cruz de Tenerife. 2Unidad de Medicina Intensiva. Complejo Hospitalario Universitario Nuestra Señora La Candelaria, Santa Cruz de Tenerife. 3Universidad de La Laguna, Santa Cruz de Tenerife
Introduction: Pediatric care has improved significantly in recent years, and one of the most notable programs in this field is the “Pediatric Home Care Program for Complex Chronic Patients with Palliative Needs”, promoted by the Primary Care Management of Tenerife. This program, which celebrated its second year in 2024, has been a pioneer in the care of children with serious chronic illnesses or who require palliative care, providing home care and improving the quality of life of boys and girls and their families, in addition to avoid many long hospital stays. The program responds to the limited availability of specialized resources on the island and to hospital overload, establishing a pioneering model in Spain based on a multidisciplinary team composed of a pediatrician, a nurse and with the collaboration of psychologists and social workers. This approach allows for personalized and continuous care, ranging from medical treatments to emotional support for patients and their families.
Patients and methods: Patient selection is based on rigorous complexity criteria, made by the team. Since its inception, 70 patients have been integrated, distributed across various municipalities in Tenerife, most of them with neurological diseases, high recognized disability and use of medical devices.
Results: Among the highlighted services are the management of critical episodes, administration of medications at home, palliative support, vaccination and emotional support. This model has proven to be efficient and cost-effective, reducing unnecessary hospitalizations and alleviating the burden on the health system.
Discussion: The program has achieved a significant impact on the quality of life of patients and their families, consolidating itself as a benchmark for comprehensive home care in pediatrics. Its patient-centered approach and technological innovation position it as a model to be replicated in other regions, with the goal of expanding its coverage and continuing to transform child health care in Tenerife.
DOI: 10.20986/medpal.2025.1566/2024
Forgotten diseases even in Palliative Care. A case report.
Marta Lobo Antuña1, Victoria Lobo Antuña2, Cristina Martín Fuertes3, Antonio Pita Carranza3
1Equipo de Soporte Hospitalario Cuidados Paliativos. Hospital Universitario de la Princesa, Madrid. 2Medicina Interna. Consorcio Universitario Hospital General de Valencia, . 3Equipo de Soporte Hospitalario Cuidados Paliativos. Hospital Universitario de la Princesa,
We present the case of a 71-year-old woman with a complex history of rheumatoid arthritis and interstitial pneumonitis with pulmonary fibrosis receiving palliative care. She consulted our department for the appearance of skin lesions that initially did not improve with antibiotic treatment and corticosteroids. After an exhaustive interdisciplinary assessment, she was given a diagnosis of pellagra, a vitamin B3 deficiency, which was effectively treated with niacinamide and dietary adjustments. This case underlines the importance of early identification of nutritional deficiencies also in palliative patients, as well as the need for close collaboration between medical specialties to optimize comprehensive patient management.
DOI: 10.20986/medpal.2025.1567/2024
“Palliative care saves our lives”. A phenomenological perspective of families.
Lourdes Chocarro González1, Purificación González Villanueva2, María Avilés Martínez3, Irene Martin Romero Martin Romero3, Juan Manuel Vázquez Sánchez3, Ana Alcaide Donoso4, Alcora de los Santos Mora4
1Cuidados paliativos pediatricos. Hospital Infamntil Niño Jesús, Las Rozas. 2Enfermería. Universidad Alcalá de Henares (España), Alcalá de Henares. 3Cuidados paliativos pediatricos . Hospital Infantil Universitario Niño Jesús, Madrid. 4Cuidados paliativos pediátricos. Fundación Porque viven, Madrid
Introduction: The perspective of families caring at home for children with life-limiting illnesses, who are attended by a paediatric palliative care team 24 hours a day, 365 days a year (24/7), has been little explored.
Objective: To know families’ experiences regarding the care received at home (24/7) by a Paediatric Palliative Care Team.
Patients and Method: Interpretative phenomenological study. Intentional sampling was conducted among mothers, fathers, and caregivers (families) of children cared for by a specific team in Spain. Data collection was carried out through open-ended online questionnaires, focus groups, and field notes. Thematic analysis was performed following COREQ guidelines and the established norms for qualitative research reporting.
Results: Twenty-nine subjects participated in the study. 86.20% were women, most of them being mothers (89,65%), and 72,41% were dedicated full-time to the child’s care.
Two main topics (Normalizing the extraordinary; and Paediatric Palliative Care saved our lives), and 7 subtopics (difficulties of daily life; the child provides the sense; experience; support; my life before palliative care; the moment I was referred to palliative care; and care in pediatric palliative care) arise.
Discussion - Conclusions: These families expressed their suffering until they were treated by this Paediatric Palliative Care Team. They felt they had arrived there too late. Home hospitalisation 24/7 through a Paediatric Palliative Care Team is a new mode of care in Spain that prevents hospital admissions and improves the lives of these families. "Palliative care has saved our lives" reflects the change that this resource has brought to their lives. Further research is needed to explore the feasibility of implementing this model of care, to improve information-communication processes, and to enhance coordination between care levels.
DOI: 10.20986/medpal.2025.1503/2024
A Systematic Review of Demoralization Syndrome, its Assessment and
Treatment in Patients at the End of Life
María Isabel Cajiao Bolaños1, Laura Martínez García2, Paulo César Silva Trejos3, CELIA IBÁÑEZ DEL PRADO4
1Facultad Psicología. Universidad Complutense de Madrid, Pozuelo de Alarcón. 2Psicología . Cruz Roja Española, Santa Cruz de Tenerife. 3Facultad Psicología. Universidad Complutense de Madrid, Houston. 4PERSONALIDAD EVALUACIÓN Y TTO EN PSICOLOGÍA CLÍNIC. 913942136, Boadilla del Monte
Objective: To review demoralization syndrome (DS), concept, measurement scales and treatment options.
Methodology: Systematic review of DS between January 2008 and Febreury 2024.
Results: There are different definitions of DS and specialized instruments for its evaluation. Some therapeutic management, group and individual, could be applied to patients with DS. However, no specific treatment for DS was found.
Conclusions: Kissane (2001) proposes a more complete definition of DS. The most widely used instrument for the assessment of DS is the simplified DS-II scale. There are no psychological therapies to address DS, but some intervention techniques may have favorable results in addressing some of the symptoms of DS.
DOI: 10.20986/medpal.2025.1516/2024
A new Gnosticism
Alvaro Sanz1, María del Valle2, Luis Alberto Flores3
1Oncología Médica. Hospital Universitario del Río Hortega, . 2Servicio de Radioterapia. Hospital Clínico Universitario, . 3Servicio de Formación y Evaluación de las Especial. Gerencia de Salud de Castilla y León,
DOI: 10.20986/medpal.2025.1592/2025