International psychometric validation of the Living with Chronic Illness Scale in Spanish-speaking patients with chronic obstructive pulmonary disease.

OBJECTIVES: To validate the Living with Chronic Illness (LW-CI) Scale in patients with chronic obstructive pulmonary disease (COPD). DESIGN: Observational, cross-sectional validation study with retest. Acceptability, reliability, precision and construct validity were tested. SETTING: The study took place in primary and secondary specialised units of public and private hospitals of Spain and Colombia. PARTICIPANTS: The study included 612 patients with COPD assessed from May 2018 to May 2019. A consecutive cases sampling was done. Inclusion criteria included: (A) patients with a diagnosis of COPD; (B) native Spanish speaking; (C) able to read and understand questionnaires; and (D) able to provide informed consent. Exclusion criteria included: (A) cognitive deterioration and (B) pharmacological effect or disorder that could disrupt the assessment. RESULTS: The LW-CI-COPD presented satisfactory data quality, with no missing data or floor/ceiling effects, showing high internal consistency for all the domains (Cronbach's alpha for the total score 0.92). Test-retest reliability was satisfactory (intraclass correlation coefficient=0.92). The LW-CI-COPD correlated 0.52-0.64 with quality of life and social support measures. The scale demonstrated satisfactory known-groups validity, yielding significantly different scores in patients grouped according to COPD severity levels. CONCLUSIONS: This has been the first validation study of the LW-CI-COPD. It is a feasible, reliable, valid and precise self-reported scale to measure living with COPD in the Spanish-speaking population. Therefore, it could be recommended for research and clinical practice to measure this concept and evaluate the impact of centred-care interdisciplinary interventions based on the patients' perspective, focused on providing holistic and comprehensive care to patients with COPD.

Validation of living with chronic illness scale in a type 2 diabetes mellitus population.

BACKGROUND: Worldwide, type 2 diabetes mellitus (T2DM) is one of the most prevalent chronic diseases and one of those producing greatest impact on patients' day-to-day quality of life. Our study aim is to validate the "Living with Chronic Illness Scale" for a Spanish-speaking T2DM population. METHODS: In this observational, international, cross-sectional study, 582 persons with T2DM were recruited in primary care and outpatient hospital consultations, in Spain and Colombia, during the period from May 2018 to June 2019. The properties analysed were feasibility/acceptability, internal consistency, reliability, precision and (structural) content-construct validity including confirmatory factor analysis. The COSMIN checklist was used to assess the methodological/psychometric quality of the instrument. RESULTS: The scale had an adequate internal consistency and test retest reliability (Cronbach's alpha = 0.90; intraclass correlation coefficient = 0.96, respectively). In addition, the instrument is precise (standard error of measurement = 3.34, with values < ½SD = 8.52) and correlates positively with social support (DUFSS) (rs = 0.56), quality of life (WHOQOL-BREF) (rs = 0.51-0.30) and ssatisfaction with life (SLS-6) (rs = 0.50-0.38). The original 26-items version of the scale did not support totally the confirmatory factor analysis. The COSMIN checklist is favourable for all the properties analysed, although weaknesses are detected for structural validity. CONCLUSIONS: The LW-CI-T2DM is a valid, reliable and accurate instrument for use in clinical practice to determine how a person's life is affected by the presence of diabetes. This instrument correlates well with the associated constructs of social support, quality of life and satisfaction. Additional research is needed to determine how well the questionnaire structure performs when robust factor analysis methods are applied.

Quality of Life, Physical and Mental Health of Family Caregivers of Dependent People with Complex Chronic Disease: Protocol of a Cohort Study.

BACKGROUND: informal caregivers have a high risk of suffering from diseases derived from the chronic stress to which they are subjected for their dedication to the care of their relatives. Such stress has a direct influence on the person cared for, mainly affecting the quality of their care. Therefore, the aim of the present study is to assess the association of caregiving on physical and mental perceived health in family caregivers of dependent adults with complex chronic diseases. METHODS: a prospective longitudinal cohort study, with a follow-up period of 36 months (HUELLA cohort). The exposed cohort will be formed by family caregivers of dependent patients with complex chronic pathologies. The unexposed cohort will be taken from the general population adjusted for age, sex and health. Outcome variables will include attendance to health services, consumption of psychoactive drugs, dedication to care (only in exposed cohort), concession of the Act on Promotion of Personal Autonomy and Care for dependent persons (exposed only), perceived physical and mental health, depression level, burden level and new diagnosis of chronic pathology of the caregiver during the study. RESULTS: the expected results will be applicable and will incorporate improvements to the usual health system clinical practice, providing feedback to professionals dedicated to the provision, planning and design of services to family caregivers, as well as to groups and organizations of caregivers. CONCLUSIONS: investments in preventing low-quality informal care are key, mainly through early identification and interventions to support caregivers who suffer from stress, anxiety or depression.

Health-Related Quality of Life and Use of Hospital Services by Patients with Heart Failure and Their Family Caregivers: A Multicenter Case-Control Study.

BACKGROUND: Heart failure (HF) causes high rates of hospital admissions. It is known that disease progression impacts the health-related quality of life (HRQoL) of both patients and caregivers, yet to date, this finding is based on cross-sectional studies with limited samples. OBJECTIVES: The study aim is to analyze the relationship between HF patients' use of hospital services (a proxy for disease progression) and the HRQoL of their family caregivers. METHODS: This work is a multicenter nested case-control study on a population of patients admitted to hospitals in southern Spain due to heart failure. The sample comprised 530 patient-caregiver dyads. Hospital admission data were retrospectively collected for the 5 years prior to inclusion in the study. Bivariate analyses and multivariate logistic regression were used to determine associations between patient deterioration and caregivers' quality of life. RESULTS: Patients' use of hospital services was associated with worsened quality of life for family caregivers, with an overall OR of 1.48 (95% CI: 1.23-1.79). A positive correlation was found between patients' perceptions of their physical health and the perceived mental health of caregivers (r = 0.127, p = 0.004) and between the perceived mental health of both (r = 0.291; p <0.0001). CONCLUSIONS: Greater use of hospital services by patients with HF is an independent predictor of deterioration of family caregivers' HRQoL. The physical and mental components of patients' and their family caregivers' HRQoL interact and influence each other. Additional factors, such as the nature and intensity of care provided, also determine the worsening of a family caregiver's HRQoL. CLINICAL RELEVANCE: These results can be used to identify family caregivers of people with heart failure at risk of suffering a deterioration in their health-related quality of life. Increased use of hospital services is an independent predictor of the deterioration of the family caregivers' health-related quality of life. Since clinical nurses are the main provider who gives support and education to family caregivers, they should be alert to this situation and individualize interventions to prevent this deterioration.

Overestimation of hours dedicated to family caregiving of persons with heart failure.

AIMS: The aim of this study is to profile the family caregivers of people living with heart failure, to determine the perceived and real time devoted to daily care and to identify the factors associated with caregivers' overestimation of time dedicated to care. BACKGROUND: The time spent by family caregivers on daily care is related to overload, but there are differences between real and perceived time spent. The reason for this difference is unknown, as is its impact on the caregiver. DESIGN: Multicentre, cross-sectional study. METHODS: This study forms part of a longitudinal, multicentre, ambispective cohort investigation. The study population was composed of 478 patient-family caregiver dyads and the data were collected over 2 years from 2014 - 2016. RESULTS: The mean time perceived to be spent on daily care was 8.79 hr versus a real value of 4.41 hr. These values were positively correlated. A significant correlation was also found between the overestimation of hours spent and the age of the caregiver, the duration of the caregiving relationship and the number of people providing support and with the patient's level of dependence and self-care. CONCLUSION: The overestimation of time dedicated to care seems to be related to patients' and caregivers' characteristics, such as functional status, caregiver burden, age and cohabitation. These patterns should be considered by nurses when carrying out assessment and care planning with these patients and their caregivers.

Evaluación de la motivación para la cesación tabáquica en pacientes hospitalizados / Assessing motivation to smoking cessation in hospitalized patients

Objetivo: Evaluación del nivel de motivación para la cesación tabáquica en los pacientes que ingresan en un hospital de agudos, identificación de los factores que predicen el inicio del cambio y establecimiento de un grupo de riesgo susceptible de intervención. Método: Estudio transversal descriptivo. Evaluación retrospectiva de las historias clínicas de 248 pacientes fumadores mayores de 18 años ingresados en unidades médicas y quirúrgicas de un hospital comarcal, entre mayo de 2014 y abril de 2015. Se valoraron datos sociodemográficos, variables relacionadas con la necesidad de respirar, consumo de cigarros/día, motivación para la cesación tabáquica, interés manifestado y antecedentes de patología respiratoria e ingresos previos. Resultados: El resultado del test de Richmond indicó que el 54% de los pacientes (n=134) tenía una baja motivación para dejar de fumar frente al 11,7% (n=29) que manifestaron una alta motivación. El grupo de pacientes que quería recibir ayuda (n=77) estaba constituido fundamentalmente por hombres (p=0,009), ingresados a cargo de especialidades médicas (p=0,026) principalmente cardiología (51,%) y consumidores de 11-29 cigarrillos/día (p=0,015). La presencia de disnea al ingreso, antecedentes de patología respiratoria e ingreso en el año previo por motivos respiratorios no constituyeron variables predictivas para obtener una respuesta motivadora hacia la cesación tabáquica. Conclusión: Se evidencia un grupo de pacientes afectados respiratoriamente con baja motivación para dejar de fumar que no quieren recibir ayuda y que deben ser considerados grupo diana para planificar estrategias motivadoras para el inicio del cambio (AU)

Aim: To assess motivation to quit smoking in patients admitted to an acute care hospital, determine predictors of readiness to change, and identify a risk group that requires targeted motivational interviewing. Methods: A cross-sectional descriptive study. A retrospective study was performed on the medical records of 248 patients aged >18 years with smoking habits admitted to the medical and surgery units of a district hospital between May 2014 and April 2015. The data collected included sociodemographic data, data on respiratory function, number of cigarettes smoked per day, motivation to quit smoking, patient-reported readiness to quit, history of respiratory diseases and previous admissions. Results: The Richmond test revealed that 54% of patients (n=134) were poorly motivated to quit smoking vs. 11.74% (n=29) who reported to be highly motivated. The group of patients who reported to be willing to receive support (n=77) was prevailingly composed of men (p=.009) admitted to a medical care unit (p=.026) -mainly the Unit of Cardiology (51%)- who smoked 11/29 cigarettes/day (p=.015). Dyspnoea at admission, a history of respiratory disease and previous admissions for respiratory problems were not predictors of readiness to quit. Conclusions: This study identifies a risk group of patients with respiratory disease, low motivation to quit smoking and poor readiness to receive smoke cessation support, that should be the target of motivational approaches to behavior change (AU)

Assessing motivation to smoking cessation in hospitalized patients. / Evaluación de la motivación para la cesación tabáquica en pacientes hospitalizados.

AIM: To assess motivation to quit smoking in patients admitted to an acute care hospital, determine predictors of readiness to change, and identify a risk group that requires targeted motivational interviewing. METHODS: A cross-sectional descriptive study. A retrospective study was performed on the medical records of 248 patients aged >18 years with smoking habits admitted to the medical and surgery units of a district hospital between May 2014 and April 2015. The data collected included sociodemographic data, data on respiratory function, number of cigarettes smoked per day, motivation to quit smoking, patient-reported readiness to quit, history of respiratory diseases and previous admissions. RESULTS: The Richmond test revealed that 54% of patients (n=134) were poorly motivated to quit smoking vs. 11.74% (n=29) who reported to be highly motivated. The group of patients who reported to be willing to receive support (n=77) was prevailingly composed of men (p=.009) admitted to a medical care unit (p=.026) -mainly the Unit of Cardiology (51%)- who smoked 11/29 cigarettes/day (p=.015). Dyspnoea at admission, a history of respiratory disease and previous admissions for respiratory problems were not predictors of readiness to quit. CONCLUSIONS: This study identifies a risk group of patients with respiratory disease, low motivation to quit smoking and poor readiness to receive smoke cessation support, that should be the target of motivational approaches to behavior change.

Análisis de la toma de decisiones compartidas al final de la vida en las historias clínicas / Analysis of medical records of the making of shared end of life decisions

OBJETIVO: Describir la información ofrecida al paciente y/o su familia sobre el pronóstico de la enfermedad, mediante la evaluación de los registros clínicos de los pacientes en situación de enfermedad avanzada fallecidos en la Agencia Sanitaria Costa del Sol, Marbella, Málaga y describir las diferencias halladas en el proceso de muerte en función de la información proporcionada. MÉTODO: Estudio transversal descriptivo. Se evaluaron de forma retrospectiva 398 historias clínicas de pacientes mayores de 18 años fallecidos en los años 2009 y 2011 en la Agencia Sanitaria Costa del Sol, Marbella, por enfermedad oncológica y no oncológica según McNamara. Se examinaron los registros clínicos de los 7 últimos días de vida y se determinó la presencia o ausencia de un conjunto de 20 variables elaboradas en función de las disposiciones que recoge la ley autonómica que regula el proceso de muerte digna en Andalucía. RESULTADOS: El registro de haber informado a la familia se encontró en 311 historias clínicas (78,1%) y la constancia de haber informado al paciente sobre su pronóstico apareció reflejada en 23 historias (5,8%). Cuando la familia estaba informada del pronóstico decidió significativamente sobre las intervenciones sanitarias que se llevaron a cabo; 34,7% vs 12,6% (p = 0,001), se limitó el esfuerzo terapéutico; 57,6% vs 26,4% (p = 0,001) y se retiró la medicación previo al fallecimiento 29,3% vs 14,1% (p = 0,011). El paciente informado de su pronóstico decidió sobre las opciones planteadas; 38,1% vs 3,7% (p = 0,001) tenían manifestadas voluntades anticipadas, 21,7% vs 2,1% (p = 0,001) y se les ofreció información sobre cuidados paliativos, 30,9% vs 7,7% (p = 0,001) y otras medidas para garantizar el bienestar 43,5% vs 17,1% (p = 0,004). CONCLUSIÓN: Los profesionales sanitarios debemos ofrecer mayor información al paciente y emprender una práctica sanitaria que lo implique en la toma de decisiones al igual que se hace con la familia, así como dejar constancia por escrito de todo el proceso tal y como establecen las leyes autonómicas que garantizan una muerte digna

OBJECTIVE: Describe the information provided to the patient and/or family about the prognosis of the disease, by evaluating the clinical records of patients who died of advanced disease in the Costa del Sol Healthcare Agency, Marbella (Malaga, Spain), and describe the differences found in the death process according to the information provided. METHOD: A descriptive cross-sectional study was conducted, to obtain a retrospective analysis of the medical records of 398 terminally-ill patients aged over 18 years, who died in 2009 or 2011 in the Costa del Sol Healthcare Agency. The diseases were classified as oncological or chronic non-oncological, according to McNamara. Clinical records of the last seven days of life were examined, as well as the presence or absence of a set of 20 variables based on the regulations contained in the law regulating autonomic process of a dignified death in Andalucía. RESULTS: The family was recorded to have been informed in 311 cases (78.1%) and records showed that the patient had been informed about his/her prognosis in 23 cases (5.8%). When the family was informed of the prognosis, this had a significant influence on the health interventions carried out; 34.7% vs 12.6% (P=.001), on limitations to the treatment provided; 57.6% vs 26.4% (P=.001), and on the withdrawal of medication prior to death; 29.3% vs 14.1% (P=.011). When the patient was given this information, he/she took decisions regarding the options available; 38.1% vs 3.7% (P=.001), expressed his/her preferences beforehand; 21.7% vs 2.1% (P=.001), and was given information about palliative care; 30.9% vs 7.7% (P=.001), and other measures to alleviate discomfort; 43.5% vs 17.1% (P=.004). CONCLUSIONS: Healthcare professionals should provide more information to patients and families and perform health practices that involve patients in the decision-making process, as established in current legislation

Gestión enfermera del dolor en pacientes hospitalizados con patologías médicas no oncológicas / Pain management nursing in hospitalized patients with non-oncological diseases

OBJETIVO: Evaluar la gestión del dolor en los pacientes hospitalizados con patologías médicas no oncológicas y analizar los factores que influyen en su valoración. MÉTODO: Estudio transversal descriptivo. Se evaluaron de forma retrospectiva los episodios de dolor reflejados en las historias clínicas de 105 pacientes mayores de 18 años ingresados en unidades médicas de un hospital comarcal entre septiembre y diciembre de 2014. Se examinó la documentación y gestión de los episodios de dolor a través de 22 variables definidas en base a los criterios de calidad del proceso de manejo del dolor. RESULTADOS: Se llevaron a cabo un total de 184 mediciones. En el 70,1% de los casos (n = 129) se evaluó y reflejó el valor de la escala visual analógica EVA, y en el 44,3% de los episodios (n = 54) se reevaluó el dolor. En el grupo de pacientes menores de 70 años el dolor se reevaluó de forma significativa superior a los mayores de 70 años; 53,1 vs.26,8% (p = 0,01), y en las mujeres fue considerado un dolor puntual sin relación con el motivo de ingreso (50 vs.25,7% p = 0,027). En el 21,1% de los casos (n = 26) la enfermera incluyó el diagnóstico de dolor como problema de colaboración en el plan de cuidados. CONCLUSIÓN: Se desprenden áreas de mejora en la gestión del dolor, fundamentalmente en lo referente al registro de sus características y reevaluación. La edad y el sexo de los pacientes influyen significativamente en su abordaje

AIM: To assess pain management in patients hospitalized with a non-oncological disease and evaluate factors involved in pain assessment. METHODS: A descriptive, cross-sectional study. We reviewed pain episodes documented in the medical records of 105 patients aged > 18 years admitted to the medical units of a regional hospital between September and December 2014. Reports of pain episodes were evaluated by assessing 22 variables related to pain management quality criteria. RESULTS: A total of 184 reports were reviewed. Pain was measured using the visual analogue scale (VAS) in 70.1% of patients (n = 129); pain was reassessed in 44.3% (n = 54) of PATIENTS: Pain reassessment was significantly more frequent in patients aged < 70 years, as compared to older patients (53.1 vs.26.8%, respectively; p = 0.01). Pain was more frequently considered to be unrelated to the cause of admission in women as compared to men (50 vs.25.7% p = 0.027). Pain was identified in the patient care plan as a collaborative problem by the nurse for 21.1% of the PATIENTS: CONCLUSIONS: Some aspects of pain management should be improved, especially those regarding pain description and reassessment. The age and sex of patients significantly influence the approach of pain

[Pain management nursing in hospitalized patients with non-oncological diseases]. / Gestión enfermera del dolor en pacientes hospitalizados con patologías médicas no oncológicas.

AIM: To assess pain management in patients hospitalized with a non-oncological disease and evaluate factors involved in pain assessment. METHODS: A descriptive, cross-sectional study. We reviewed pain episodes documented in the medical records of 105 patients aged>18 years admitted to the medical units of a regional hospital between September and December 2014. Reports of pain episodes were evaluated by assessing 22 variables related to pain management quality criteria. RESULTS: A total of 184 reports were reviewed. Pain was measured using the visual analogue scale (VAS) in 70.1% of patients (n=129); pain was reassessed in 44.3% (n=54) of patients. Pain reassessment was significantly more frequent in patients aged<70 years, as compared to older patients (53.1 vs. 26.8%, respectively; p=0.01). Pain was more frequently considered to be unrelated to the cause of admission in women as compared to men (50 vs. 25.7% p=0.027). Pain was identified in the patient care plan as a collaborative problem by the nurse for 21.1% of the patients. CONCLUSIONS: Some aspects of pain management should be improved, especially those regarding pain description and reassessment. The age and sex of patients significantly influence the approach of pain.

Effects and consequences of caring for persons with heart failure: (ECCUPENIC study) a nested case-control study.

AIM: Primary: To report a research protocol to analyse the relationship between the degree of heart failure and the health-related quality of life of patients and their family caregivers. Secondary: To identify the characteristics of heart failure patients and their caregivers and the association between these characteristics and hospital admissions. Moreover, to conduct a longitudinal analysis of the relationship between patients' and that of their family caregivers. BACKGROUND: As heart failure progresses, it reduces the patient's quality of life and progressive functional deterioration requires hospital admission and the provision of healthcare resources. The availability of a family caregiver is a key element in addressing and managing this healthcare problem and some research results have associated this factor with the prognosis for heart failure. DESIGN: Multicentre cohort nested case-control study. METHODS: Exploratory analysis: Descriptive statistics, measures of central tendency and dispersion or percentages. Bivariate analysis: Using Student's t-test and chi-square test, anova and non-parametric tests. Survival analysis: Kaplan-Meier curves. Multivariate analysis: Cox's proportional hazards model. All calculations performed with an alpha level of 0·05. DISCUSSION: Lack of family support for patients with HF or greater duration of care is associated with more hospitalizations and increased depression among caregivers. Further longitudinal studies with a large population sample are required.

El derecho a morir con dignidad en un hospital de agudos: un estudio cualitativo / The right to die with dignity in an acute-care hospital: A qualitative study

OBJETIVO: Explorar las percepciones, creencias, barreras y facilitadores que encuentran médicos y enfermeras ante el derecho a morir con dignidad en un hospital de agudos y la aplicabilidad de las disposiciones de la Ley 2/2010 del 8 de abril. MÉTODO: Estudio cualitativo descriptivo a través del análisis de los discursos de médicos y enfermeras que desempeñan su actividad asistencial con pacientes terminales oncológicos y no oncológicos en un hospital de agudos mediante la técnica de grupos focales. RESULTADOS: Los resultados muestran la existencia de diferentes obstáculos para garantizar los derechos de los pacientes en el proceso de muerte y el cumplimiento de los deberes de los profesionales y las instituciones sanitarias. Estas dificultades dependen de las características propias del paciente y la familia, del propio profesional sanitario, de la organización de la atención y de factores culturales. CONCLUSIONES: Se evidencia la necesidad de mejorar el proceso de comunicación con el paciente y su familia y favorecer la toma de decisiones compartidas, establecer medidas que clarifiquen la sedación paliativa y la limitación del esfuerzo terapéutico. Es necesario potenciar la aplicabilidad de la ley de muerte digna y voluntades anticipadas en áreas especializadas no oncológicas. Se precisa mayor formación en la dimensión ética, espiritual y antropológica del cuidado en estas situaciones

AIM: To examine the perceptions and beliefs of doctors and nurses, and the barriers and facilitators they must address as regards the right to die with dignity in an acute-care hospital, and to consider the applicability of the provisions of Law 2/2010 of 8 April in this respect. METHOD: A qualitative descriptive study, based on the focus group technique, using discourse analysis of the views of doctors and nurses responsible for the health care of terminal cancer and non-cancer patients in an acute-care hospital. RESULTS: The results obtained show that there are diverse obstacles to assure the rights of terminal patients, and to ensure the proper performance of their duties by healthcare professionals and institutions. The nature and impact of these difficulties depend on the characteristics of the patients and their families, the health workers involved, the organisation of health care, and cultural factors. CONCLUSIONS: The study highlights the need to improve the process of communication with patients and their families, to facilitate shared decision making and to establish measures to clarify issues such as palliative sedation and treatment limitation. It is necessary to improve the applicability of the law on living wills and dignified death in non-cancer specialist areas. Further training is needed regarding ethical, spiritual and anthropological aspects of care in these situations

[The right to die with dignity in an acute-care hospital: a qualitative study]. / El derecho a morir con dignidad en un hospital de agudos: un estudio cualitativo.

AIM: To examine the perceptions and beliefs of doctors and nurses, and the barriers and facilitators they must address as regards the right to die with dignity in an acute-care hospital, and to consider the applicability of the provisions of Law 2/2010 of 8 April in this respect. METHOD: A qualitative descriptive study, based on the focus group technique, using discourse analysis of the views of doctors and nurses responsible for the health care of terminal cancer and non-cancer patients in an acute-care hospital. RESULTS: The results obtained show that there are diverse obstacles to assure the rights of terminal patients, and to ensure the proper performance of their duties by healthcare professionals and institutions. The nature and impact of these difficulties depend on the characteristics of the patients and their families, the health workers involved, the organisation of health care, and cultural factors. CONCLUSIONS: The study highlights the need to improve the process of communication with patients and their families, to facilitate shared decision making and to establish measures to clarify issues such as palliative sedation and treatment limitation. It is necessary to improve the applicability of the law on living wills and dignified death in non-cancer specialist areas. Further training is needed regarding ethical, spiritual and anthropological aspects of care in these situations.