Psychometric Validation of the Patient-Reported Experience Measure (PREM) Questionnaire "HowRwe" in Patients With Respiratory Disease Receiving Home Respiratory Therapies.

Introduction: The patient experience is defined as all the interactions that occur between patients and the healthcare system. The experience of patients with respiratory disease with home respiratory treatments (HRT) is not captured in currently available Patient-Reported Outcome Measures (PROM). We present the psychometric validation of the Patient-Reported Experience Measure (PREM) 'HowRwe' in Spanish and for respiratory patients with HRT. Methods: After translation following ISPOR guidelines (International Society for Pharmacoeconomics and Outcomes Research), the questionnaire was administered to adult respiratory patients who were receiving treatment at Hospital Universitario de La Princesa. The administration was done in two stages with 6 months of difference between the pre- and post-test. Results: We studied 228 respiratory patients, with a mean (SD) age of 64.1 (13.2) years, 52.2% were men, 68.0% were married or coupled, and 56.6% were retired. Reliability coefficients of the scale were adequate, with α = .921 and Ω = .929 for pre-test, and α = .940 and Ω = .958 for post. The confirmatory factor analysis tested for pre- and post-intervention, showed an excellent overall fit: χ2(2) = 49.380 (p < .001), CFI = .941 and SRMR = .072; and χ2(2) = 37.579 (p < .001), CFI = .982 and SRMR = .046, respectively. No statistically significant associations were observed for neither age, adherence nor quality of life, except between HowRwe post-test and quality of life pre-test (r = .14 [.01,.26]; p = .035). No significant differences were found in sociodemographic variables. No differences in pre-test or post-test were found in effect of HRT. 85.6% of patients found the content of HowRwe "Useful", and the preferred channel to respond it were paper, app and email. Conclusions: The Spanish version of the 'HowRwe' questionnaire to measure the experience in respiratory patients with home respiratory treatments (HRT), has adequate psychometric properties and conceptual and semantic equivalence with the original English version.

Introducción: La experiencia del paciente se define como todas las interacciones que ocurren entre los pacientes y el sistema de salud. La experiencia de los pacientes con enfermedades respiratorias con terapias respiratorias domiciliarios (TRD) no se refleja en las Medidas de resultados informados por el paciente (PROM) disponibles actualmente. Presentamos la validación psicométrica de la Medida de Experiencia Reportada por el Paciente (PREM por sus siglas en inglés) 'HowRwe' en español y para pacientes respiratorios con TRD. Métodos: Después de la traducción siguiendo las pautas de ISPOR (Sociedad Internacional de Farmacoeconomía e Investigación de Resultados), el cuestionario se administró a pacientes respiratorios adultos que estaban recibiendo tratamiento en el Hospital Universitario de La Princesa. La administración se realizó en dos etapas con 6 meses de diferencia entre el pre y post test. Resultados: Se estudiaron 228 pacientes respiratorios, con una edad media (DE) de 64,1 ± 13,2 años, el 52,2% eran hombres, el 68,0% estaban casados o en pareja y el 56,6% eran jubilados. Los coeficientes de confiabilidad de la escala fueron adecuados, con α = .921 y Ω = .929 para el pretest, y α = .940 y Ω = .958 para el post. El análisis factorial confirmatorio testado para pre y postintervención, mostró un ajuste global excelente: χ2(2) = 49.380 (p < .001), CFI = .941 y SRMR = .072; y χ2(2) = 37,579 (p < .001), CFI = .982 y SRMR = .046, respectivamente. No se observaron asociaciones estadísticamente significativas ni para la edad, la adherencia ni para la calidad de vida, excepto entre HowRwe postest y calidad de vida pretest (r = .14 [.01,.26];p = .035). No se encontraron diferencias significativas en las variables sociodemográficas. No se encontraron diferencias en el efecto de la TRH en el pretest o postest. El 85,6% de los pacientes encontró "útil" el contenido de HowRwe y el canal preferido para responder fue el papel, la aplicación y el correo electrónico. Conclusiones: La versión española del cuestionario 'HowRwe' para medir la experiencia en pacientes respiratorios con tratamientos respiratorios domiciliarios (TRH), tiene adecuadas propiedades psicométricas y equivalencia conceptual y semántica con la versión original en inglés.

Psychometric validation of the MIND Youth Questionnaire (MY-Q) to assess quality of life in Spanish patients with type 1 diabetes between 12 and 25 years old.

AIM: Validate in Spanish the Monitoring Individual Needs in Diabetes Youth Questionnaire (MY-Q), a multi-dimensional self-report HRQoL questionnaire designed for paediatric diabetes care. DESIGN AND METHODS: After translation, 209 patients diagnosed with type 1 diabetes, between 12 and 25 years old were assessed. The patients belonged to 12 hospitals in Spain. RESULTS: Exploratory factor analysis including one-factor up to seven-factor solutions were tested. The three-factor solution (Negative Impact of Diabetes, Empowerment and Control of Diabetes and Worries) was the most parsimonious model with adequate fit: χ2(723)=568.856 (p<0.001), CFI=0.913, RMSEA=0.072 [0.064, 0.080], SRMR=0.075. The three-factor solution and the grouping of the items followed a clear rationale. Cronbach's alpha was 0.816 for Negative Impact, 0.700 for Empowerment and Control and 0.795 for Worries. The study of the relationship between the MY-Q dimensions and socio-demographics variables show a relationship between age and the MY-Q: F(6,410)=10.873 (p<0.001), η2=0.137. Participants younger than 14 years old showed greater scores on Empowerment and Control when compared to participants between 14 and 17 years old (p=0.021); statistically significant differences were found for the participants 18 years old or older, who showed lower levels of Worries than the younger patients. Concurrent validity found that the dimension of Negative Impact of Diabetes was positively related to WHO-5, and the PedsQL Diabetes Module. CONCLUSION: The Spanish version of the MY-Q to measure HRQoL in patients with type 1 diabetes between the ages of 12 and 25, has adequate psychometric properties and conceptual and semantic equivalence with the original version in Dutch.

Evaluating Pain Management Practices for Cancer Patients among Health Professionals: A Global Survey.

Background: Cancer incidence in the world is predicted to increase in the next decade. While progress has been in diagnosis and treatment, much still remains to be done to improve cancer pain therapy, mainly in underserved communities in low-income countries. Objective: To determine knowledge, beliefs, and barriers regarding pain management in both high- and low-income countries (according to the WHO classification); and to learn about ways to improve the current state of affairs. Design: Descriptive survey. Setting/Subjects: Fifty-six countries worldwide; convenience sample of 1639 consisted of 36.8% physicians; 45.1% nurses, and 4.5% pharmacists employed in varied settings. Results: Improved pain management services are key elements. Top barriers include religion factors, lack of appropriate education and training at all levels, nonadherence to guidelines, patients' reluctance to report on pains, over regulation associated with prescribing and access to opioid analgesics, fear of addiction to opioids, and lack of discussions around prognosis and treatment planning. Conclusion: The majority of patients with cancer in low-income countries are undertreated for their pain. Promoting cancer pain accredited program of training and education on pain management for physicians and nurses is crucial, as well as advocating policymakers and the public at large.

Psychological Profile of Patients Diagnosed With Idiopathic Pulmonary Fibrosis / Perfil psicológico de pacientes diagnosticados de fibrosis pulmonar idiopática

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Development and Validation of the OSA-CPAP Perceived Competence Evaluation Interview.

INTRODUCTION: Continuous positive airway pressure (CPAP) is one of the most common therapies for Obstructive Sleep Apnea (OSA). We present a brief, patient-reported outcome measure used to assess patients' levels of adherence with CPAP treatment. METHODS: A questionnaire was developed based on academic literature. We qualitatively tested a pool of 18 items. It was tested in a sample of 174 patients from the Hospital La Princesa. Next, 1021 patients from Catalonia were evaluated. RESULTS: 5 items were removed. Nominal groups referred to three areas: general knowledge about OSA and its risks; CPAP treatment information and expectations; CPAP use, monitoring, and confidence with its use. The 13 retained items maintained the same meaning as the original questionnaire (r=.986; p<.001) and the three proposed dimensions detected a significant increase in general knowledge of OSA (t[173]=8.097, p<.001); CPAP treatment information (t[173]=15.170, p<.001); and CPAP use (t[173]=14.642, p<.001). The final 12-item version was reliable (CRI=.793) and its internal structure was adequate (χ2[51]=72.073; p=.027, CFI=.967, RMSEA=.020 [.000, .030]). Women had a better general knowledge of OSA (t[1,018]=2.190, p=.029), CPAP treatment information (t[1,018]=2.920, p=.004), and higher overall OSA-CPAP scores (t[1,018]=3.093, p=.002). Scores were positively related to quality of life and motivation, adherence was positively related to CPAP use and monitoring, and the total score was negatively related to daytime sleepiness. CONCLUSIONS: The interview could help clinicians prevent some dropouts by targeting patients with lower adherence. It's a tool for assessing patient adherence to CPAP and to promote strategies through education and external motivational stimuli.

Development and Validation of the OSA-CPAP Perceived Competence Evaluation Interview / Desarrollo y validación de la Entrevista para la evaluación de la competencia percibida en AOS-CPAP

Introducción: La presión positiva continua en la vía aérea (CPAP) es uno de los tratamientos más frecuentes para la apnea obstructiva del sueño (AOS). Presentamos una breve medida de resultados percibidos por el paciente para evaluar los niveles de adhesión de los pacientes al tratamiento con CPAP.Métodos: Se desarrolló un cuestionario basado en la literatura académica. Se ensayó cualitativamente un conjunto de 18 ítems en una muestra de 174 pacientes del Hospital La Princesa (Madrid). A continuación se evaluaron 1.021 pacientes de Cataluña.Resultados: Se eliminaron 5 ítems. Los grupos nominales se refirieron a tres áreas: conocimiento general sobre la AOS y sus riesgos; información y expectativas de tratamiento con CPAP; uso de la CPAP, seguimiento y desenvoltura en su manejo. Los 13 ítems conservados mantuvieron el mismo significado que el cuestionario original (r=0,986; p<0,001) y las tres dimensiones propuestas detectaron un aumento significativo en el conocimiento general de la AOS (t[173]=8,097, p<0,001); información sobre el tratamiento con CPAP (t[173]=15,170, p<0,001); y uso de la CPAP (t[173]=14,642, p<0,001). La versión final de 12 ítems fue fiable (CRI=0,793) y su estructura interna fue adecuada (χ2 [51]=72,073; p=0,027, CFI=0,967, RMSEA=0,020 [0,000, 0,030]). Las mujeres mostraron mejor conocimiento general de la AOS (t[1,018]=2,190, p=0,029), de la información sobre el tratamiento con CPAP (t[1,018]=2,920, p=0,004), y obtuvieron mejores puntuaciones globales en la entrevista OSA-CPAP (t[1,018]=3,093, p=0,002). Las puntuaciones se relacionaron positivamente con la calidad de vida y la motivación, la adhesión se relacionó positivamente con el uso y el seguimiento con CPAP, y la puntuación total se relacionó negativamente con la somnolencia diurna. (AU)

Introduction: Continuous positive airway pressure (CPAP) is one of the most common therapies for Obstructive Sleep Apnea (OSA). We present a brief, patient-reported outcome measure used to assess patients’ levels of adherence with CPAP treatment.Methods: A questionnaire was developed based on academic literature. We qualitatively tested a pool of 18 items. It was tested in a sample of 174 patients from the Hospital La Princesa. Next, 1021 patients from Catalonia were evaluated.Results: 5 items were removed. Nominal groups referred to three areas: general knowledge about OSA and its risks; CPAP treatment information and expectations; CPAP use, monitoring, and confidence with its use. The 13 retained items maintained the same meaning as the original questionnaire (r=.986; p<.001) and the three proposed dimensions detected a significant increase in general knowledge of OSA (t[173]=8.097, p<.001); CPAP treatment information (t[173]=15.170, p<.001); and CPAP use (t[173]=14.642, p<.001). The final 12-item version was reliable (CRI=.793) and its internal structure was adequate (χ2[51]=72.073; p=.027, CFI=.967, RMSEA=.020 [.000, .030]). Women had a better general knowledge of OSA (t[1,018]=2.190, p=.029), CPAP treatment information (t[1,018]=2.920, p=.004), and higher overall OSA-CPAP scores (t[1,018]=3.093, p=.002). Scores were positively related to quality of life and motivation, adherence was positively related to CPAP use and monitoring, and the total score was negatively related to daytime sleepiness. (AU)

Development and Validation of Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) in Home Respiratory Therapies: Oxygen Therapy, CPAP Treatment, Mechanical Ventilation, and Aerosol Therapy.

Introduction: Home respiratory therapies (HRT) are treatments aimed at diseases that are generally chronic and that have a significant impact on the biopsychosocial aspects of patients' lives. No validated patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) are available to assess the impact of these treatments on quality of life (QoL) in HRT. The objective of this work was to identify and validate PROMs and PREMs in HRT. Methods: The process was divided into 5 stages: review of the literature, patient interviews, qualitative validation workshops, cognitive validation, and psychometric validation. For the identification of PROM and PREM, consensus techniques were used with patients, caregivers, specialist doctors, and therapists. The evaluation was based on items that were collected from questionnaires on diseases commonly treated with HRT techniques in clinical practice. The psychometric validation was analyzed by a team of psychologists trained in the methodology. Results: For the literature review, 20 articles met the inclusion and exclusion criteria. After patient interviews, the research team selected 40 PROM items for each treatment from the total of 51 PROM questionnaires found for respiratory diseases. For the validation workshops, the list of selected items had to be reduced to a final number of 15. After the workshops, 8 preliminary questionnaires were drawn up (4 PROMs and 4 PREMs). A second validation round was then held and the questionnaires were modified with the list of PREMs and PROMs resulting from the whole process. The psychometric validation of PROM and PREM questionnaires for each of the therapies consisted of an exploratory factor analysis (EFA) and a confirmatory factor analysis (CFA). Overall, 1299 questionnaires answered by 650 patients were obtained. Conclusions: A preliminary set of PREMs and PROMs associated with HRT with good reliability indexes was developed: Cronbach's alpha and Composite Reliability Index (CRI). These are questionnaires with a 5-point Likert scale that the patient can quickly complete and which provide excellent scores for acceptability, reliability, and validity in psychometric tests. This may offer HRT units a robust basis for better monitoring of patient outcomes and needs and improve healthcare quality and clinical outcomes.

Introducción: Las terapias respiratorias domiciliarias (TRD) son tratamientos dirigidos a patologías, generalmente crónicas, que tienen un impacto significativo en los aspectos biopsicosociales de la vida del paciente. No hay PROM y PREM validados informados por los pacientes para evaluar el impacto de los tratamientos en sí mismos en la calidad de vida (CdV) en la TRD. El objetivo de este trabajo es identificar y validar las PROM y PREM en las TRD. Métodos: Se ha realizado un proceso de cinco etapas: investigación bibliográfica, entrevistas a pacientes, talleres de validación cualitativa, validación cognitiva y validación psicométrica. Para la identificación de PRO y PRE se utilizaron técnicas de consenso con pacientes, cuidadores, médicos especialistas y terapeutas. Se basó en ítems recogidos de cuestionarios relacionados con patologías prevalentes tratadas con TRD y que se utilizan en la práctica clínica. Para la validación psicométrica, un equipo de psicólogos metodólogos realizó los análisis. Resultados: Para la revisión bibliográfica, 20 artículos cumplieron con los criterios de inclusión y exclusión. Después de las entrevistas con los pacientes, el equipo de investigación seleccionó 40 ítems PRO para cada terapia de un total de 51 cuestionarios PRO encontrados para enfermedades respiratorias. Con los talleres de validación se tuvo que reducir la lista de ítems seleccionados a una lista final de 15. Después de los talleres se realizaron 8 cuestionarios preliminares (4 PRO y 4 PRE). Luego de una segunda validación, los cuestionarios fueron modificados con la lista de PRE y PRO resultante de todo el proceso. La validación psicométrica de los cuestionarios PROM y PREM en cada una de las terapias consistió en un análisis factorial exploratorio (EFA) y un análisis factorial confirmatorio (AFC). Se obtuvieron 1.299 cuestionarios respondidos por 650 pacientes. Conclusiones: Se ha desarrollado un primer conjunto de PREM y PROM relacionados con la TRD, con buenos índices de fiabilidad: alfa de Cronbach y Composite Reliability Index (CRI). Se trata de cuestionarios con una escala de 5 puntos Likert que el paciente puede completar rápidamente con excelentes puntuaciones de aceptabilidad, fiabilidad y validez en las pruebas psicométricas. Los servicios de TRD ahora podrían tener una base para un mejor seguimiento de los resultados y las necesidades de los pacientes y, por lo tanto, para mejorar la calidad de la atención médica y los resultados clínicos.

MEntA Program Based on Motivational Interview to Improve Adherence to Treatment of Obstructive Sleep Apnea With Continuous Positive Airway Pressure (CPAP): A Randomized Controlled Trial.

Introduction: The first-line treatment for obstructive sleep apnoea is (OSA) continuous positive airway pressure (CPAP) therapy, which achieves a high level of efficacy with continuous use. However, daily application of this therapy requires a motivated patient profile, as lack of adherence is the main problem with this therapy. The aim of this study was to determine whether an educational and training program based on motivational interviewing and proper feedback, improved adherence. Methods: A randomized, controlled, single-center trial design was performed. The interventions were standard of care vs MEntA Program based on motivational interview for adherence. The main outcome was the adherence with the CPAP therapy after 90 days of treatment. Secondary outcomes were the motivation, perceived competence, quality of life, sleepiness, emotional state, activities and social relations. Results: For adherence, statistically significant results were obtained in favor of the interventional arm with the MEntA (p < 0.01), with a mean difference of 1.60 h (95% CI, 0.60 to 2.61). The Questionnaire of Evaluation of Perceived Competence in Adherence to CPAP in OSA show also a statistically significant change in favor of the MEntA intervention with a mean difference of 4.61 (95% CI, 3.49 to 5.72) (p < 0.001), as well as quality of life p < 0.001. Conclusions: The MEntA intervention included as part of an educational and training program for patients with OSA with CPAP therapy shows solid results in terms of its efficacy.

Introducción: El tratamiento de primera línea para la apnea obstructiva del sueño (AOS) es la terapia de presión positiva continua en las vías respiratorias (CPAP), que alcanza un alto nivel de eficacia con el uso continuo. Sin embargo, la aplicación diaria de esta terapia requiere un perfil de paciente motivado, ya que la falta de adherencia es el principal problema de esta terapia. El objetivo de este estudio fue determinar si un programa educativo y de capacitación basado en entrevistas motivacionales y una adecuada retroalimentación, mejoró la adherencia. Métodos: Se realizó un diseño de ensayo aleatorizado, controlado y de un solo centro. Las intervenciones fueron el estándar de atención frente al programa MEntA basado en la entrevista motivacional para la adherencia. El outcome principal fue la adherencia a la terapia CPAP después de 90 días de tratamiento. Los outcomes secundarios fueron la motivación, la competencia percibida, la calidad de vida, la somnolencia, el estado emocional, las actividades y las relaciones sociales. Resultados: Para la adherencia se obtuvieron resultados estadísticamente significativos a favor de la intervención con MEntA (p < 0.01), con una diferencia media de 1.60 horas (IC95%, 0.60 a 2.61). El Cuestionario de Evaluación de la Competencia Percibida en Adherencia a CPAP en SAHOS muestra también un cambio estadísticamente significativo a favor de la intervención MEntA con una diferencia media de 4,61 (IC95%, 3,49 a 5,72) (p < 0,001), así como calidad de vida p < 0,001. Conclusiones: La intervención MEntA incluida como parte de un programa educativo y formativo para pacientes con AOS con terapia CPAP muestra sólidos resultados en cuanto a su eficacia.

Responding to the Spiritual Needs of Palliative Care Patients: A Randomized Controlled Trial to Test the Effectiveness of the Kibo Therapeutic Interview.

CONTEXT: The WHO recognizes the need to attend to patients' spiritual needs as being fundamental to comprehensive and high-quality end-of-life care. Spiritual needs must be attended to since the resolution of biological and psychosocial issues is insufficient to reduce patients' suffering. Associations have been found between spiritual needs and other variables of importance for patients in palliative care. Despite the consensus that exists regarding the importance of assessing and attending to spiritual needs, professionals encounter many difficulties in attempting to do so. OBJECTIVES: Our study aims to demonstrate the benefits that the Kibo therapeutic interview in palliative care patients can have for spirituality, demoralization, and resilience. METHODS: A parallel randomized controlled trial of two groups was undertaken. Information on 60 palliative care patients during pre- and post-intervention time points was gathered. RESULTS: ANOVAs showed a statistically significant effect of the intervention on the dimension of transpersonal spirituality. The ANCOVA for the effect of the intervention on resilience also pointed to its effectiveness. When the means of demoralization were examined, a higher decrease in the levels of demoralization for patients in the intervention group was observed, when compared to patients in the control group. CONCLUSION: Our findings point to this interview as an effective means to attend to the spiritual needs of palliative patients, reducing demoralization and increasing resilience. Future research could focus on a broader sample and on the effects of this interview on family caregivers, mourners, and health care professionals. CLINICAL TRIAL REGISTRATION NUMBER: https://clinicaltrials.gov/ct2/show/ Identifier NCT03995095.

Chronic obstructive pulmonary disease (COPD) in Spain and the different aspects of its social impact: a multidisciplinary opinion document / Enfermedad Pulmonar Obstructiva Crónica (EPOC) y diferentes aspectos de su impacto social: un documento multidisciplinar de opinión

Chronic obstructive pulmonary disease (COPD) is one of the most prevalent diseases in the World, and one of the most important causes of mortality and morbidity. In adults 40 years and older, it affects more than 10% of the population and has enormous personal, family and social burden. Tobacco smoking is its main cause, but not the only one, and there is probably a genetic predisposition that increases the risk in some patients. The paradigm of this disease is changing in Spain, with an increase of women that has occurred in recent years. Many of the physio pathological mechanisms of this condition are well known, but the psychological alterations to which it leads, the impact of COPD on relatives and caregivers, the limitation of daily life observed in these patients, and the economic and societal burden that they represent for the health system, are not so well-known. A major problem is the high under-diagnosis, mainly due to difficulties for obtaining, in a systematic way, spirometries in hospitals and health-care centers. For this reason, the Fundación de Ciencias de la Salud and the Spanish National Network Center for Research in Respiratory Diseases (CIBERES) have brought together experts in COPD, patients and their organizations, clinical psychologists, experts in health economics, nurses and journalists to obtain their opinion about COPD in Spain. They also discussed the scientific bibliometrics on COPD that is being carried out from the CIBERES and speculated on the future of this condition. The format of the meeting consisted in the discussion of a series of questions that were addressed by different speakers and discussed until a consensus conclusion was reached

La enfermedad pulmonar obstructiva crónica (EPOC) es una de las enfermedades más prevalentes en el mundo y una de las causas más importantes de mortalidad y morbilidad. En los adultos de más de 40 años, afecta al menos al 10% de la población y tiene una enorme carga personal, familiar y social. El tabaquismo es su principal causa, pero no la única, y probablemente existe una predisposición genética que aumenta el riesgo en algunos pacientes. El paradigma de esta enfermedad está cambiando en España, con un aumento de la incidencia en mujeres que se ha producido en los últimos años. Muchos de los mecanismos fisiopatológicos de la EPOC son bien conocidos, pero no lo son tanto las alteraciones psicológicas a las que conduce, el impacto de la enfermedad en los familiares y cuidadores, la limitación de la vida cotidiana que se observa en estos pacientes y la carga económica y social que representan para el sistema sanitario. Un problema importante es el elevado infradiagnóstico, debido principalmente a las dificultades para obtener, de forma sistemática, espirometrías en los hospitales y centros de salud. Por este motivo, la Fundación de Ciencias de la Salud y el Centro de Investigación en Enfermedades Respiratorias (CIBERES) han reunido a expertos en EPOC, pacientes y sus organizaciones, psicólogos clínicos, expertos en economía de la salud, enfermeras y periodistas para obtener su opinión sobre la EPOC en España. También se ha hablado de la bibliometría científica sobre la EPOC que se está llevando a cabo desde el CIBERES y se ha especulado sobre el futuro de esta enfermedad. El formato de la reunión consistió en la discusión de una serie de cuestiones que fueron abordadas por diferentes ponentes y discutidas hasta llegar a una conclusión consensuada

Intervenciones psicológicas en espiritualidad en cuidados paliativos: una revisión sistemática / Psychological interventions in spirituality: A systematic review in palliative care

CONTEXTO: La espiritualidad puede entenderse como una condición fundamental del sentido de la persona. Se incluye dentro de los objetivos fundamentales de trabajo de los cuidados paliativos, considerándose que la calidad de vida del paciente no puede favorecerse en su conjunto si no se aborda la dimensión espiritual. Objetivo: El objetivo de esta revisión sistemática es sintetizar la evidencia científica más reciente en espiritualidad en pacientes paliativos con enfermedad avanzada, atendiendo sobre todo a qué tipo de intervención que contemple la dimensión espiritual se ha llevado a cabo con ellos. Se recogen datos sobre el tipo de estudio y resultados estadísticos encontrados en cuanto a espiritualidad. Método: Se llevó a cabo una búsqueda en la literatura científica siguiendo las guías PRISMA en 13 bases bibliográficas electrónicas, resultando 10 estudios experimentales o cuasiexperimentales (1.067 participantes) y 38 revisiones de intervenciones y conceptos teóricos en espiritualidad en cuidados paliativos. Los estudios fueron seleccionados en función del nivel de información que aportaban sobre la evidencia requerida en los objetivos del estudio y siguiendo los criterios de inclusión/exclusión. Resultados: A diferencia de lo que sucede con otros conceptos como el distrés emocional o la dignidad, nuestros resultados sugieren que, aunque la espiritualidad es un aspecto que en cuidados paliativos se contempla de manera continuada, no existe todavía una metodología/protocolo consensuado de trabajo, concreto y sistematizado. La mejoría observada en algunos estudios en aspectos de la espiritualidad es obtenida de manera tangencial o colateral. En cuanto a los instrumentos, el FACIT-Sp es el instrumento más empleado para medir los resultados en espiritualidad. Conclusión: Esta revisión se ha visto muy limitada por la amplia variabilidad de las características de los estudios. Existe una gran dificultad a la hora de seleccionar criterios de comparación, dado que el diseño de los estudios es muy diverso, así como las variables estudiadas y los instrumentos de evaluación. Aunque se han encontrado intervenciones que implican una mejora en la espiritualidad, estas no se centran en el trabajo concreto de esta dimensión. Todo esto dificulta la evaluación de la eficacia de los protocolos de actuación en espiritualidad, obstaculizando el acceso al conocimiento relativo a la atención, por parte de los profesionales de la salud, de las necesidades espirituales del paciente paliativo

CONTEXT: Spirituality can be seen as a fundamental condition of a person's sense of being. It is included among the fundamental objectives of palliative care work, considering that the quality of life of patients cannot be enhanced as a whole if the spiritual dimension is not addressed. OBJECTIVE: The objective of this systematic review is to summarize the latest scientific evidence on spirituality in palliative patients with advanced disease, paying particular attention to the kind of intervention that addresses the spiritual dimension that has been used. Data on the type of study and statistical results regarding spirituality were collected. METHOD: We conducted a search of the scientific literature following the PRISMA guidelines in 13 electronic bibliographic databases, resulting in 10 experimental or quasi-experimental studies (1,067 participants) and 38 reviews of interventions and theoretical concepts on spirituality in the hospice. The studies were selected based on the level of information they supplied for the evidence required in the study objectives and the criteria for inclusion/exclusion. RESULTS: Unlike with other concepts such as emotional distress or dignity, our results suggest that, while spirituality is an aspect that is continually contemplated in palliative care, there is still an agreed, specific and systematic methodology/protocol,. The improvement observed in some studies on aspects of spirituality is obtained tangentially or collaterally. The FACIT-Sp is the instrument most used to measure results in spirituality. CONCLUSION: This review has been severely limited by the wide variability of the characteristics of the studies. There is great difficulty in selecting benchmarks, since the design of the studies is very diverse, as well as the variables and testing instruments. Although interventions were found that implied an improvement in spirituality, they do not focus on the actual work on this element. All this makes an evaluation of the effectiveness of protocols on spirituality difficult and hinders access to knowledge concerning the care by health professionals of the spiritual needs of palliative patients

Estudio comparativo de la eficacia del counselling y de la terapia de la dignidad en pacientes paliativos / Comparative study on the efficacy of Counselling and Dignity Therapy in palliative care patients

OBJETIVO: Existen múltiples trabajos que contemplan el conjunto de las necesidades de los pacientes al final de la vida, contando con propuestas de modelos integrales para una intervención terapéutica paliativa. La metodología más común que aborda estas necesidades es la intervención de counselling, aunque recientemente también ha crecido el uso internacional de la «terapia de la dignidad». Este estudio tiene como objetivo identificar y cuantificar diferencias en términos de distrés emocional, calidad de vida y preservación de la dignidad tras el tratamiento con estos 2 tipos de INTERVENCIONES: MÉTODO: Diseño cuasi-experimental en la Unidad de Hospitalización a Domicilio (UHD) del Hospital General Universitario de Valencia. Tras aplicar criterios de inclusión y exclusión, 30 pacientes con diagnóstico oncológico avanzado fueron asignados aleatoriamente a los 2 grupos de intervención. Se registraron datos sociodemográficos, clínicos, sobre malestar emocional (EVA sufrimiento), ansiedad (HADS), depresión (HADS), dignidad (IPD) y calidad de vida (EORT-QLQ-30). Siguiéndose las guías de intervención, los pacientes recibieron tratamiento psicológico de 2-3 sesiones semanales en sus domicilios. Se llevaron a cabo pruebas t y χ2para comparar las características de los grupos en la línea base, pruebas t de medidas repetidas para evaluar la eficacia de los tratamientos y pruebas t para muestras independientes para comparar las diferencias entre INTERVENCIONES: RESULTADOS: Los grupos no fueron diferentes en la línea base en ninguna de las variables, a excepción del género. El grupo counselling mejoró las variables sufrimiento, calidad de vida y 2 de las dimensiones de dignidad (angustia existencial y angustia dependencia). El grupo Dignidad obtuvo los mismos resultados, a excepción de la variable ansiedad, en la que no se encontró mejoría tras la intervención. La comparación de la eficacia de las intervenciones no mostró diferencias entre estas. CONCLUSIONES: Ambas intervenciones fueron beneficiosas para los pacientes, en la misma medida, mejorando su calidad de vida, bienestar emocional y distrés. Futuras investigaciones deberían abordar esta problemática haciendo frente a una de las limitaciones del estudio, el reducido tamaño muestral, y estudiar la posible replicabilidad de los resultados encontrados en este trabajo, pionero en terapia de la dignidad en el contexto español

AIM: Many works contemplate patient needs at the end of life, with many integral models for palliative care INTERVENTIONS: The most commonly used methodology for meeting these needs is Counselling therapy, although recently there has been an increase in the international use of the Dignity therapy. This study aims to identify and quantify differences in emotional distress, quality of life, and preservation of dignity after both of these types of INTERVENTIONS: Method: A study of quasi-experimental design was developed in the Home Hospitalization Service (HHS) of University General Hospital of Valencia. After applying inclusion and exclusion criteria, 30 patients with an advanced oncology diagnosis were randomly assigned to the two intervention groups. Data were collected on sociodemographic, clinical, emotional distress (EVA), anxiety (HADS), depression (HADS), dignity (PDI) and quality of life (EORT-QLQ-30). Following intervention guides, patients received psychological treatment of 2-3 sessions per week at home. The statistics tests t and χ2 were used to compare the baseline characteristics of both groups, t tests for repeated measures to assess treatments efficacy, and t tests for independent groups to compare differences between INTERVENTIONS: RESULTS: There were no differences between the groups at baseline, except for gender. The Counselling group improved in suffering, quality of life, and in two of the dignity dimensions (existential and dependence anguish). The Dignity group results were similar, except for anxiety, which did not improve after the intervention. The comparison of efficacy showed no differences between the INTERVENTIONS: CONCLUSIONS: Both interventions were beneficial for patients, to the same extent, improving their quality of life, emotional well-being, and distress. Future research should study this situation taking into account one of the limitations of this study, the small sample size, and studying the repeatability of the results found in this ground-breaking work on Dignity Therapy in the Spanish context

The Short Demoralization Scale (SDS): A new tool to appraise demoralization in palliative care patients.

OBJECTIVE: The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS). METHOD: We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS). RESULTS: The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI 95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument. SIGNIFICANCE OF RESULTS: The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.

Demoralization Scale in Spanish-Speaking Palliative Care Patients.

CONTEXT: Among the approaches to the demoralization syndrome, the one proposed by Kissane et al. is prevalent in the literature. These authors developed the Demoralization Scale (DS) to assess emotional distress, conceived as demoralization. OBJECTIVES: To present the Spanish adaptation of the Demoralization Scale in palliative care patients, with a new and more comprehensive approach to its factorial structure. METHODS: A cross-sectional study was carried out in 226 Spanish palliative care patients in three different settings: hospital, home care unit, and continued care unit. Outcome measures included the DS and the Hospital Anxiety and Depression Scale. Analyses comprised confirmatory factor analyses to test the original, German, and Irish structure of the DS, exploratory structural equation modeling (ESEM), estimations of internal consistency, and multivariate analyses of variance for criterion-related validity. RESULTS: The confirmatory factor analyses showed inappropriate fit for the previous structures when studied in the Spanish version of the DS. With ESEM, the best fitting structure was the five-factor solution, without item 18. Reliability results offered good estimations of internal consistency for all the dimensions except for sense of failure. Cronbach alpha coefficients were appropriate for the dimensions of loss of meaning (0.86), helplessness (0.79), disheartenment (0.88), and dysphoria (0.80), but low reliability was found for sense of failure (0.62). Convergent and discriminant validity showed positive correlations between demoralization, anxiety, and depression. Patients with higher levels of anxiety had higher scores on every dimension of demoralization, and those with higher levels of depression had higher scores on loss of meaning, disheartenment, and sense of failure, but not on dysphoria or helplessness. CONCLUSION: The Spanish adaptation of the DS has shown appropriate psychometric properties. It has been useful to differentiate between depression and the demoralization syndrome, pointing to helplessness and dysphoria as unique characteristics of demoralized palliative care patients.

Comparing counseling and dignity therapies in home care patients: A pilot study.

OBJECTIVE: Several studies have successfully tested psychosocial interventions in palliative care patients. Counseling is the technique most often employed. Dignity therapy (DT) has recently emerged as a tool that can be utilized to address patients' needs at the end of life. The aims of our study were to examine the effects of DT and counseling and to offer useful information that could be put into practice to better meet patients' needs. METHOD: We developed a pilot randomized controlled trial at the Home Care Unit of the General University Hospital of Valencia (Spain). Some 70 patients were assigned to two therapy groups. The measurement instruments employed included the Patient Dignity Inventory (PDI), the Hospital Anxiety and Depression Scale (HADS), the Brief Resilient Coping Scale (BRCS), the GES Questionnaire, the Duke-UNC-11 Functional Social Support Questionnaire, and two items from the EORTC Quality of Life C30 Questionnaire (EORTC-QLQ-C30). RESULTS: The results of repeated-measures t tests showed statistically significant differences with respect to the dimensions of dignity, anxiety, spirituality, and quality of life for both groups. However, depression increased in the DT group after the intervention, and there were no differences with respect to resilience. Therapy in the counseling group did not negatively affect depression, and resilience did improve. When post-intervention differences between groups were calculated, statistically significant differences in anxiety were found, with lower scores in the counseling group (t(68) = -2.341, p = 0.022, d = 0.560). SIGNIFICANCE OF RESULTS: Our study provided evidence for the efficacy of dignity therapy and counseling in improving the well-being of palliative home care patients, and it found better results in the counseling therapy group with respect to depression, resilience, and anxiety.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS).

OBJECTIVE: This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity. METHOD: Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support. RESULTS: After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale. SIGNIFICANCE OF RESULTS: The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Síndrome de desmoralización como alternativa diagnóstica al estado de ánimo deprimido en pacientes paliativos / Demoralization syndrome as an alternative diagnostic to depressed mood in palliative patients

El estado de ánimo de los pacientes paliativos es uno de los objetivos fundamentales en la atención profesional a los mismos. Distintos autores han estudiado dicho estado de ánimo tomando como base definiciones de la depresión tal como se entiende en la población general. Son muchas las voces y los datos de investigación que apuntan a la necesidad de adecuar la investigación a la situación del paciente en final de vida. Quizá una de las ideas más interesantes es la planteada por Frank y desarrollada por Kissanne y colaboradores, proponiendo la diferenciación entre depresión y desmoralización. Siguiendo esta línea de pensamiento, la desmoralización reflejaría mejor la situación observada en estos pacientes, permitiendo un mejor diagnóstico diferencial y promoviendo un afinamiento mayor en las intervenciones. El síndrome de desmoralización vendría definido como la presencia de desánimo, desaliento, desamparo, pérdida de sentido de la vida y fracaso, sin que los síntomas somáticos propios de la conceptualización de la depresión tengan un peso importante. Teniendo en cuenta esta definición, las intervenciones psicológicas tendrían unos objetivos operativos distintos al tratamiento de depresión, obteniéndose resultados en el bienestar del paciente paliativo. En este trabajo se realiza un planteamiento crítico y se invita a reflexionar sobre las intervenciones psicológicas que actualmente se llevan a cabo en pacientes paliativos

The emotional state of palliative patients is one of the main aims in their professional attention. Several authors have approach this matter using depression definitions as defined for the general population. There are also many expert professional opinions and research data pointing to the need for adequate research at the patient’s end of life situation. Perhaps one of the most interesting ideas is that one initially expressed by Frank and developed by Kissanne et al., suggesting differentiation between depression and demoralization. Following this line of thought, demoralization would more accurately reflect the situation observed in these patients, allows a better differential diagnosis and promotes more tailored interventions. Demoralization syndrome would be defined as the presence of discouragement, despair, helplessness, loss of meaning in life and feelings of failure. That approach leaves aside somatic symptoms of depression scores. This work exposes a critical view and being thought-provoking about current interventions in palliative care

Teoría y práctica de la dignidad en cuidados paliativos: una revisión / Theory and praxis of dignity in palliative care: a review

Se realiza un estudio de revisión sobre la dignidad humana, con el objetivo de entender este concepto a nivel teórico en los cuidados paliativos, y además, saber en qué medida estas ideas están desarrolladas a nivel práctico. Se realiza un estudio de textos centrados en revisiones de la dignidad humana desde diferentes disciplinas: filosofía, derecho, religión, bioética, atención sanitaria y cuidados paliativos. También se realiza un trabajo consistente en hallar coincidencias entre los diferentes puntos de vista, encontrando algunas semejanzas entre todas las disciplinas pero también diferencias que en Cuidados Paliativos generan el debate actual. Los autores consideran que es necesaria una revisión del tema de la dignidad humana más cercana a la práctica clínica en Cuidados Paliativos

A review study on human dignity is performed in order to theoretically understand this concept in the framework of palliative care, and in which extent these ideas have been developed on a practical level. Specifically, a review of those texts focused on human dignity from philosophy, law, religion, bioethics, health care and palliative care was carried out. This review also tried to find and report some similarities and differences among different approaches. Those differences are the basis of current debate on palliative care. Authors conclude that any approach to human dignity should be closer to the clinical practice in palliative care