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1.
Open Respir Arch ; 6(3): 100327, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38764717

RESUMEN

Introduction: Lymphangioleiomyomatosis (LAM) is a rare disease that affects women almost exclusively. We aimed to determine the psychological profile in patients with LAM, and their potential association with sociodemographic and clinical features, and to know their role in coping with the disease. Material and methods: Cross-sectional and descriptive study in collaboration with the Spanish Association of LAM (AELAM). The variables measured were: socio-demographic, psychological (anxiety, depression, demoralization, spirituality, resilience, social support), clinical (treatment) and health-related quality of life. Results: We studied 87 LAM patients, with a mean (SD) age of 47.7 (7.7) years, and time since diagnose was 10.1 (5.4) years. 75.9% of patients were receiving sirolimus or everolimus, and oxygen therapy was required in 34.5% of patients. Anxiety was found in 46% of patients, depression in 55%, while only 2% presented demoralization and 14% deficit in spirituality. Social support and resilience were adequate. The "non-severe" group (without oxygen therapy) presented worse results in anxiety. A structural equation model to explore association between variables, showed very adequate fit indices: χ2(14) = 29.743 (p = .074); CFI = .983; TLI = .967; SRMR = .058; RMSEA = .075[.000-.128]. The model identifies resilience, spirituality and social support as "protective factors" from anxiety, depression, and demoralization. Conclusions: This study performed on a large series of women with LAM describes their psychological profile, in addition to showing how they cope with the disease. We have found that other psychological constructs, such as perceived social support and resilience, are protective factors. Early psychological evaluation and intervention is necessary to reduce comorbidities and prevent mental health problems in women with LAM.


Introducción: La linfangioleiomiomatosis (LAM) es una enfermedad rara que afecta casi exclusivamente a las mujeres. Nuestro objetivo fue determinar el perfil psicológico en los pacientes con LAM, y su potencial asociación con características sociodemográficas y clínicas, y conocer su papel en el afrontamiento de la enfermedad. Material y métodos: Estudio transversal y descriptivo en colaboración con la Asociación Española de LAM (AELAM). Las variables medidas fueron: sociodemográficas, psicológicas (ansiedad, depresión, desmoralización, espiritualidad, resiliencia, apoyo social), clínicas (tratamiento) y calidad de vida relacionada con la salud. Resultados: Se estudiaron 87 pacientes con LAM, con una edad media (DE) de 47,7 ± 7,7 años y un tiempo desde el diagnóstico de 10,1 ± 5,4 años. El 75,9% de los pacientes estaban recibiendo sirolimus o everolimus, y el 34,5% de los pacientes requirió oxigenoterapia. La ansiedad se encontró en el 46% de los pacientes, la depresión en el 55%, mientras que solo el 2% presentó desmoralización y el 14% déficit en la espiritualidad. El apoyo social y la resiliencia fueron adecuados. El grupo «no grave¼ (sin oxigenoterapia) presentó peores resultados en ansiedad. Un modelo de ecuaciones estructurales para explorar asociación entre variables, mostró índices de ajuste muy adecuados: χ2(14) = 29,743 (p = 0,074); CFI = 0,983; TLI = 0,967; SRMR = 0,058; RMSEA = 0,075 (0,000-0,128). El modelo identifica la resiliencia, la espiritualidad y el apoyo social como «factores protectores¼ contra la ansiedad, la depresión y la desmoralización. Conclusiones: Este estudio realizado en una amplia serie de mujeres con LAM describe su perfil psicológico, además de mostrar cómo afrontan la enfermedad. Hemos descubierto que otros constructos psicológicos, como el apoyo social percibido y la resiliencia, son factores protectores. La evaluación e intervención psicológica temprana es necesaria para reducir las comorbilidades y prevenir problemas de salud mental en mujeres con LAM.

2.
Open Respir Arch ; 6(2): 100304, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38496265

RESUMEN

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.

3.
Endocrinol Diabetes Nutr (Engl Ed) ; 70(1): 4-13, 2023 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-36764747

RESUMEN

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.


Asunto(s)
Diabetes Mellitus Tipo 1 , Calidad de Vida , Niño , Humanos , Adolescente , Adulto , Adulto Joven , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
4.
J Palliat Med ; 25(8): 1243-1248, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35442772

RESUMEN

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.


Asunto(s)
Dolor en Cáncer , Neoplasias , Analgésicos Opioides/uso terapéutico , Dolor en Cáncer/terapia , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Dolor/etiología , Manejo del Dolor , Pautas de la Práctica en Medicina
6.
Arch Bronconeumol (Engl Ed) ; 57(6): 399-405, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-34088391

RESUMEN

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.


Asunto(s)
Trastornos de Somnolencia Excesiva , Apnea Obstructiva del Sueño , Presión de las Vías Aéreas Positiva Contínua , Femenino , Humanos , Cooperación del Paciente , Calidad de Vida , Apnea Obstructiva del Sueño/terapia
7.
Open Respir Arch ; 3(4): 100132, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-37496843

RESUMEN

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.

8.
Open Respir Arch ; 3(2): 100088, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-37497068

RESUMEN

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.

9.
Front Psychol ; 11: 1979, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32973614

RESUMEN

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.

10.
Palliat Support Care ; 15(5): 516-523, 2017 10.
Artículo en Inglés | MEDLINE | ID: mdl-28065203

RESUMEN

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.


Asunto(s)
Esperanza , Cuidados Paliativos/psicología , Psicometría/instrumentación , Psicometría/normas , Enfermo Terminal/psicología , Distribución de Chi-Cuadrado , Estudios Transversales , Humanos , Cuidados Paliativos/estadística & datos numéricos , Psicometría/métodos , Calidad de Vida/psicología , Reproducibilidad de los Resultados , España , Estrés Psicológico/complicaciones , Estrés Psicológico/etiología , Encuestas y Cuestionarios , Enfermo Terminal/estadística & datos numéricos
11.
J Pain Symptom Manage ; 51(4): 769-775.e1, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26721749

RESUMEN

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.


Asunto(s)
Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Pruebas Psicológicas , Anciano , Ansiedad/diagnóstico , Estudios Transversales , Depresión/diagnóstico , Europa (Continente) , Análisis Factorial , Femenino , Estudios de Seguimiento , Humanos , Masculino , Análisis Multivariante , Psicometría , Reproducibilidad de los Resultados , Estrés Psicológico/diagnóstico , Traducción , Traducciones
12.
Palliat Support Care ; 14(4): 321-9, 2016 08.
Artículo en Inglés | MEDLINE | ID: mdl-26463012

RESUMEN

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.


Asunto(s)
Consejo/métodos , Servicios de Atención de Salud a Domicilio , Cuidados Paliativos/psicología , Calidad de Vida/psicología , Resiliencia Psicológica , Cuidado Terminal/psicología , Enfermo Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad/terapia , Actitud Frente a la Muerte , Actitud Frente a la Salud , Depresión/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Psicoterapia Breve , España , Encuestas y Cuestionarios
13.
Palliat Support Care ; 14(2): 99-108, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26062752

RESUMEN

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.


Asunto(s)
Servicios de Atención de Salud a Domicilio/normas , Psicometría/instrumentación , Reproducibilidad de los Resultados , Derecho a Morir , Femenino , Humanos , Masculino , Psicometría/métodos , Calidad de Vida , Encuestas y Cuestionarios , Enfermo Terminal/psicología
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