Validación de la escala de convivencia con artrosis en la población española / Validation of the living with osteoarthritis in Spanish population

Objetivo: Presentar los resultados psicométricos de la escala de convivencia con artrosis (EC-Artrosis) en la población española. Diseño: Estudio observacional, multicéntrico y transversal, con retest en una fracción de la muestra. Emplazamiento: Centros públicos y privados de atención primaria y secundaria, así como asociaciones de pacientes con artrosis de Navarra, La Rioja, Madrid, Valencia y Málaga. Participantes: La muestra estuvo compuesta por un total de 291 pacientes con diagnóstico de artrosis por su médico, en cualquier estadio de la enfermedad de atención primaria o especializada, nacionalidad española, y no hospitalizados. Intervenciones: De manera adicional a la EC-Artrosis, se incluyó un cuestionario sociodemográfico y escalas para evaluar el apoyo social percibido por el paciente (DUFSS), la calidad de vida relacionada con la salud (WHOQOL-BREF) y la escala de satisfacción con la vida del paciente. Mediciones principales: Se analizaron las propiedades psicométricas de la escala EC-Artrosis, tales como viabilidad y aceptabilidad, fiabilidad (consistencia interna y estabilidad), precisión y validez de constructo (convergente, interna y para grupos conocidos). Resultados : El 100% de los datos fueron computados. La calidad de los datos y la aceptabilidad fueron excelentes. El alfa de Cronbach para el total de la escala fue de 0,87 y el índice de homogeneidad de 0,22. El ICC para el total de la escala fue de 0,88. En cuanto a la precisión, el valor del EEM fue de 5,18 (<½DE=7,47). Conclusiones: La EC-Artrosis ha mostrado ser un instrumento válido y fiable para evaluar la convivencia del paciente con artrosis a nivel nacional.(AU)

Objective: Present the psychometric results of the Living with Osteoarthritis (LW-OA) in Spanish population. Design: Observational, cross-sectional and multicenter study, with retest on a fraction of the sample. Location: Public and private centres of primary and secondary healthcare, as well as patient associations from Navarra, La Rioja, Madrid, Valencia and Malaga. Participants: The sample was composed by 291 patients with OA with a medical diagnosis in every stage of the disease from primary or secondary healthcare, Spanish nationality and not hospitalized. Interventions: In addition to LW-OA, a sociodemographic questionnaire was included, as well as scales to evaluate social support perceived from the patient (DUFSS), quality of life (WHOQOL-BREF) and satisfaction with life. Main measurements: Psychometric properties of the LW-OA were measured, as viability and acceptability, reliability (internal consistency and reproducibility), precision and construct validity (convergent, internal and known-groups). Results: 100% of the data were computable. Excellent data quality was obtained. Cronbach's alpha for the scale total was 0.87 and the homogeneity index 0.22. ICC for the scale total was 0.88. As for precision, the SEM was 5.18 (<½DE=7.47). Conclusions: The LW-OA is a valid and feasible measure to evaluate the process of living with OA in Spain.(AU)

[Validation of the living with osteoarthritis in Spanish population]. / Validación de la escala de convivencia con artrosis en la población española.

OBJECTIVE: Present the psychometric results of the Living with Osteoarthritis (LW-OA) in Spanish population. DESIGN: Observational, cross-sectional and multicenter study, with retest on a fraction of the sample. LOCATION: Public and private centres of primary and secondary healthcare, as well as patient associations from Navarra, La Rioja, Madrid, Valencia and Malaga. PARTICIPANTS: The sample was composed by 291 patients with OA with a medical diagnosis in every stage of the disease from primary or secondary healthcare, Spanish nationality and not hospitalized. INTERVENTIONS: In addition to LW-OA, a sociodemographic questionnaire was included, as well as scales to evaluate social support perceived from the patient (DUFSS), quality of life (WHOQOL-BREF) and satisfaction with life. MAIN MEASUREMENTS: Psychometric properties of the LW-OA were measured, as viability and acceptability, reliability (internal consistency and reproducibility), precision and construct validity (convergent, internal and known-groups). RESULTS: 100% of the data were computable. Excellent data quality was obtained. Cronbach's alpha for the scale total was 0.87 and the homogeneity index 0.22. ICC for the scale total was 0.88. As for precision, the SEM was 5.18 (<½DE=7.47). CONCLUSIONS: The LW-OA is a valid and feasible measure to evaluate the process of living with OA in Spain.

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.

Psychometric Validation of the Living with Chronic Illness Scale in Patients with Chronic Heart Failure.

It is necessary to develop self-reported instruments that evaluate the process of living with chronic heart failure (HF) holistically. The Living with Chronic Illness Scale-HF (LW-CI-HF) is the only available tool to evaluate how patients are living with HF. The aim is to analyse the psychometric properties of the LW-CI scale in the HF population. An international, cross-sectional validation study was carried out in 603 patients living with HF from Spain and Colombia. The variables measured were living with HF, perceived social support, satisfaction with life, quality of life and global impression of severity. The LW-CI-HF scale presented good data quality and acceptability. All domains showed high internal consistency with Cronbach's alpha coefficient ≥ 0.7. The intraclass correlation coefficient for the total score was satisfactory (0.9) in test-retest reliability. The LW-CI-HF correlated 0.7 with social support and quality of life measures. Standard error of measurement was 6.5 for total scale. The LW-CI-HF scale is feasible, reliable and valid. However, results should be taken with caution in order to be used in clinical practice to evaluate the complex process of living with HF. Further research is proposed.

Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study.

AIMS: The aim of this study were: (1) To explore the meaning that coping with Parkinson's disease has for patients and family carers; (2) To suggest the components of an intervention focused on enhancing their coping with the disease. BACKGROUND: Adapting to Parkinson's disease involves going through many difficult changes; however, it may improve quality of life in patients and family carers. One of the key aspects for facilitating the psychosocial adjustment to Parkinson's disease is the strengthening of coping skills. DESIGN: A sequential explanatory mixed methods study was carried out. Findings from the qualitative phase are presented. METHODS: Data were collected in May 2014 through three focus groups: one of people with Parkinson's disease (n = 9), one of family carers (n = 7) and one of healthcare professionals (n = 5). All focus groups were digitally recorded and transcribed verbatim and content analysis was independently carried out by two researchers. FINDINGS: The participants coincided in highlighting that coping with Parkinson's disease helped the patient and the family carer in their search for balance; and it implied a transformation in their lives. To aid the process of coping with Parkinson's disease, a multifaceted intervention is proposed. CONCLUSION: Coping with Parkinson's disease is a complex process for both patients and family carers and it should therefore be considered a standard service in healthcare policies aimed at this group. The proposed intervention constitutes a nursing tool which has great potential to improve the quality of life in Parkinson's disease and in other long-term conditions.

Estrategias psicosociales para fortalecer el afrontamiento de la enfermedad de Parkinson: perspectiva de pacientes, familiares y profesionales sociosanitarios / Psychosocial strategies to strengthen the coping with Parkinson’s disease: Perspectives from patients, family carers and healthcare professionals

OBJETIVO: Explorar los principales aspectos psicosociales que influyen en el afrontamiento de la enfermedad de los pacientes con enfermedad de Parkinson (EP) y sus familiares cuidadores. DISEÑO: Estudio cualitativo exploratorio que constituye la segunda fase de un proyecto de metodología combinada. Emplazamiento: Estudio multicéntrico realizado en la Comunidad Autónoma de Navarra en 2014 con la colaboración de Atención Primaria del Servicio Navarro de Salud-Osasunbidea, la Clínica Universidad de Navarra y la Asociación Navarra de Parkinson. PARTICIPANTES: Un total de 21 participantes: 9 personas con EP, 7 familiares cuidadores y 5 profesionales sociosanitarios. MÉTODO: Los participantes fueron seleccionados mediante muestreo opinático. Se realizaron grupos focales hasta que se consideró adecuada la saturación de los datos. Las transcripciones fueron analizadas por 2 investigadores a través de un análisis de contenido. RESULTADOS: Se identificaron 3 aspectos que influían en cómo pacientes y familiares afrontaban la EP: funcionalidad de la atención sanitaria; entorno familiar, y aceptación de la enfermedad. Considerando estos resultados, se proponen estrategias que podrían promover estos aspectos desde atención primaria, para así mejorar la adaptación a esta enfermedad en pacientes y en sus familiares cuidadores. CONCLUSIONES: La atención sociosanitaria de las personas con EP debería adoptar un enfoque integral que aborde el control de los síntomas del paciente y que responda también a los aspectos psicosociales que influyen en el afrontamiento de la enfermedad, tanto en los pacientes como en sus familiares cuidadores

OBJECTIVE: To explore the main psychosocial aspects which have influence on the coping with the disease in patients with Parkinson's disease (PD) and their family carers. DESIGN: An exploratory qualitative study which constitutes the second phase of a mixedmethods project. SETTING: Multicenter study carried out in Navarre in 2014 in collaboration with Primary Care of Navarre Service of Health-Osasunbidea, Clínica Universidad de Navarra and Navarre Association of Parkinson's patients. PARTICIPANTS: A total of 21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. METHOD: Participants were selected through purposive sampling. Focus groups were conducted until a suitable saturation data was achieved. Transcriptions were analysed by 2 researchers through a content analysis. RESULTS: Three aspects that affected how patients and family carers coped with PD were identified: features of the clinical practice; family environment, and disease's acceptance. Taking account of these findings, some strategies which could foster these aspects from primary healthcare are suggested in order to improve the adjustment to the disease in patients and family carers. CONCLUSIONS: The healthcare in people with PD should have an integral approach that tackle the symptoms control in patients and also deal with psychosocial aspects that influence on the coping with the disease, in patients and family carers

[Psychosocial strategies to strengthen the coping with Parkinson's disease: Perspectives from patients, family carers and healthcare professionals]. / Estrategias psicosociales para fortalecer el afrontamiento de la enfermedad de Parkinson: perspectiva de pacientes, familiares y profesionales sociosanitarios.

OBJECTIVE: To explore the main psychosocial aspects which have influence on the coping with the disease in patients with Parkinson's disease (PD) and their family carers. DESIGN: An exploratory qualitative study which constitutes the second phase of a mixed-methods project. SETTING: Multicenter study carried out in Navarre in 2014 in collaboration with Primary Care of Navarre Service of Health-Osasunbidea, Clínica Universidad de Navarra and Navarre Association of Parkinson's patients. PARTICIPANTS: A total of 21 participants: 9 people with PD, 7 family carers and 5 healthcare professionals. METHOD: Participants were selected through purposive sampling. Focus groups were conducted until a suitable saturation data was achieved. Transcriptions were analysed by 2 researchers through a content analysis. RESULTS: Three aspects that affected how patients and family carers coped with PD were identified: features of the clinical practice; family environment, and disease's acceptance. Taking account of these findings, some strategies which could foster these aspects from primary healthcare are suggested in order to improve the adjustment to the disease in patients and family carers. CONCLUSIONS: The healthcare in people with PD should have an integral approach that tackle the symptoms control in patients and also deal with psychosocial aspects that influence on the coping with the disease, in patients and family carers.

Living with chronic illness in adults: a concept analysis.

AIMS AND OBJECTIVES: To report an analysis of the concept of Living with chronic illness in adults, using Rodger's evolutionary analytical methodology. BACKGROUND: In the literature, several qualitative studies exist that address the question of Living with chronic illness from the adult patient's perspective. However, the lack of clarity and consensus among the existing studies renders this concept ambiguous when it is analysed in depth. DESIGN: A narrative review. METHODS: A systematic search has been carried out on electronic databases such as Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo. This was limited to articles published in either Spanish or English, from 2003-2013. RESULTS: Living with chronic illness is a complex, dynamic, cyclic and multidimensional process, and involves the development of five different attributes: Acceptance, Coping, Self-management, Integration and Adjustment. Depending on how these attributes operate, there are four different ways of living which can result from the process of Living with chronic illness: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption. CONCLUSIONS: This paper contributes to the understanding of the concept 'Living with chronic illness'. Findings in this analysis have to be evaluated with caution and further research is needed on this topic to confirm them. Also, more studies in evaluating how patients live a long-term condition are recommended to foster patient-centred care. RELEVANCE TO CLINICAL PRACTICE: Findings generated from this concept analysis can raise awareness of Living with chronic illness so that this process could be assessed in a correct and uniform way in the clinical community and improved when needed.