Barreras y facilitadores en la implantación de estándares de calidad en las unidades de hospital de día reumatológicas. Análisis cualitativo del proyecto VALORA / Barriers to and facilitators of implementing quality standards in Hospital Day Care Units in Rheumatology: Qualitative approach to the VALORA study

Objetivo: Identificar las barreras y los facilitadores en la implantación de estándares de calidad en las unidades de hospital de día (UHdD) reumatológicas. Material y métodos: Se analizaron las valoraciones sobre UHdD clasificadas en torno a estándares de estructura, procesos y resultados. La aproximación cualitativa se llevó a cabo mediante 13 grupos de discusión (GD) formados por profesionales de Reumatología (7), de Enfermería (4) y pacientes (2) de UHdD. La captación de informantes se realizó mediante muestreo intencionado atendiendo a variables que configuran las percepciones de las UHdD. El análisis de los datos se realizó siguiendo una perspectiva descriptiva-interpretativa. Resultados: La especialización de las UHdD monovalentes y la formación específica en Reumatología para Enfermería se perciben como los principales facilitadores para la implantación de estándares. Por el contrario, la demora en la disponibilidad de los fármacos en las UHdD se identifica como una barrera que prolonga la estancia de pacientes y desaprovecha recursos. Las diferencias en regulaciones locales se perciben como una posible barrera para el acceso equitativo a fármacos. El elemento mejor valorado por los pacientes fue la atención recibida, por encima de las variables estructurales o de proceso. Conclusiones: Los hallazgos de este estudio sugieren que las mejoras para la implantación de estándares de calidad en las UHdD pueden incluir 3 niveles de actuación: la propia UHdD, el centro hospitalario, y un tercero relacionado con regulaciones locales de acceso a fármacos

Objective: To identify barriers and facilitators in the implementation of quality standards in hospital day care units (HDCU) in rheumatology. Material and methods: We analyzed appraisals of HDCU in terms of standards for structure, processes and results. The qualitative approach was conducted through 13 discussion groups created by rheumatology health professionals (7), nursing professionals (4) and HDCU patients (2). The recruitment of informants was done through purposive sampling, attending to variables that form the perceptions of the HDCU. Data analysis was performed using a descriptive-interpretive method. Results: The specialization of the HDCU and specific training in rheumatology for nursing are perceived as the main facilitator for the implementation of standards. Conversely, the delay in the availability of medicines at the HDCU is identified as a barrier that prolongs patient stay and wastes resources. Differences in local regulations are perceived as a potential barrier to equitable access to medicines. The patients gave higher ratings to the care received than to structural variables or those related to process. Conclusions: The findings of this study suggest that improvements in the implementation of quality standards in HDCU may include three levels of action: the HDCU, the hospital and a third related to local regulations to access to medicines

Recomendaciones del Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa (GETECCU) y de la Confederación de Asociaciones de Enfermedad de Crohn y Colitis Ulcerosa (ACCU) para el manejo de los aspectos psicológicos en la enfermedad inflamatoria intestinal / Recommendations of the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU) and the Association of Crohn's Disease and Ulcerative Colitis Patients (ACCU) in the management of psychological problems in Inflammatory Bowel Disease patients

Objetivos. Establecer recomendaciones para el manejo de los aspectos psicológicos de los pacientes con enfermedad inflamatoria intestinal (EII). Métodos. Se llevó a cabo una reunión con un grupo de expertos en EII formado por médicos, psicólogos, enfermeras y representantes de pacientes. Se presentaron resultados de: 1) un grupo focal previo, 2) encuestas a médicos y pacientes y 3) una revisión sistemática sobre instrumentos de cribado de ansiedad y depresión. Se realizó una discusión guiada sobre los aspectos psicológicos y emocionales más importantes en EII, los criterios de derivación apropiados y situaciones a evitar. Se seleccionó el instrumento validado más aplicable a la práctica clínica. Se diseñó un documento con recomendaciones, así como una encuesta Delphi. La encuesta fue enviada al grupo y a un comité científico seleccionado del grupo GETECCU, con el objetivo de establecer el grado de apoyo a las recomendaciones establecidas. Resultados. Se establecieron 15 recomendaciones, pertenecientes a 3 procesos clave: 1) qué pasos dar para identificar problemas psicológicos en consulta de EII, 2) criterios de derivación a profesionales de la salud mental y 3) abordaje de los problemas psicológicos. Conclusiones. Se deben facilitar recursos a los profesionales sanitarios para que puedan tratar estos aspectos en consulta, identificar los trastornos que puedan afectar el curso de la enfermedad o su impacto en la vida del paciente, para ser tratados y seguidos por el profesional más adecuado. Estas recomendaciones pueden servir de base para el rediseño de los servicios o procesos de EII y como justificación para la formación del personal sanitario (AU)

Aims. To establish recommendations for the management of psychological problems affecting patients with inflammatory bowel disease (IBD). Methods. A meeting of a group of IBD experts made up of doctors, psychologists, nurses and patient representatives was held. The following were presented: 1) Results of a previous focal group, 2) Results of doctor and patient surveys, 3) Results of a systematic review of tools for detecting anxiety and depression. A guided discussion was then held about the most important psychological and emotional problems associated with IBD, appropriate referral criteria and situations to be avoided. The validated instrument most applicable to clinical practice was selected. A recommendations document and a Delphi survey were designed. The survey was sent to the group and to a scientific committee of the GETECCU group in order to establish the level of agreement with these recommendations. Results. Fifteen recommendations were established linked to 3 key processes: 1) What steps should be taken to identify psychological problems at an IBD appointment; 2) What are the criteria for referring patients to a mental health specialist; 3) How to approach psychological problems. Conclusions. Resources should be made available to healthcare professionals so that they can treat these problems during consultations, identify the disorders which could affect the clinical course of the disease and determine their impact on the patient's life in order that these can be treated and followed up by the most suitable professional. These recommendations could serve as a basis for redesigning IBD services or processes and as justification for the training of healthcare personnel (AU)

Recommendations of the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU) and the Association of Crohn's Disease and Ulcerative Colitis Patients (ACCU) in the management of psychological problems in Inflammatory Bowel Disease patients. / Recomendaciones del Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa (GETECCU) y de la Confederación de Asociaciones de Enfermedad de Crohn y Colitis Ulcerosa (ACCU) para el manejo de los aspectos psicológicos en la enfermedad inflamatoria intestinal.

AIMS: To establish recommendations for the management of psychological problems affecting patients with inflammatory bowel disease (IBD). METHODS: A meeting of a group of IBD experts made up of doctors, psychologists, nurses and patient representatives was held. The following were presented: 1) Results of a previous focal group, 2) Results of doctor and patient surveys, 3) Results of a systematic review of tools for detecting anxiety and depression. A guided discussion was then held about the most important psychological and emotional problems associated with IBD, appropriate referral criteria and situations to be avoided. The validated instrument most applicable to clinical practice was selected. A recommendations document and a Delphi survey were designed. The survey was sent to the group and to a scientific committee of the GETECCU group in order to establish the level of agreement with these recommendations. RESULTS: Fifteen recommendations were established linked to 3 key processes: 1) What steps should be taken to identify psychological problems at an IBD appointment; 2) What are the criteria for referring patients to a mental health specialist; 3) How to approach psychological problems. CONCLUSIONS: Resources should be made available to healthcare professionals so that they can treat these problems during consultations, identify the disorders which could affect the clinical course of the disease and determine their impact on the patient's life in order that these can be treated and followed up by the most suitable professional. These recommendations could serve as a basis for redesigning IBD services or processes and as justification for the training of healthcare personnel.

Barriers to and facilitators of implementing quality standards in Hospital Day Care Units in Rheumatology: Qualitative approach to the VALORA study. / Barreras y facilitadores en la implantación de estándares de calidad en las unidades de hospital de día reumatológicas. Análisis cualitativo del proyecto VALORA.

OBJECTIVE: To identify barriers and facilitators in the implementation of quality standards in hospital day care units (HDCU) in rheumatology. MATERIAL AND METHODS: We analyzed appraisals of HDCU in terms of standards for structure, processes and results. The qualitative approach was conducted through 13 discussion groups created by rheumatology health professionals (7), nursing professionals (4) and HDCU patients (2). The recruitment of informants was done through purposive sampling, attending to variables that form the perceptions of the HDCU. Data analysis was performed using a descriptive-interpretive method. RESULTS: The specialization of the HDCU and specific training in rheumatology for nursing are perceived as the main facilitator for the implementation of standards. Conversely, the delay in the availability of medicines at the HDCU is identified as a barrier that prolongs patient stay and wastes resources. Differences in local regulations are perceived as a potential barrier to equitable access to medicines. The patients gave higher ratings to the care received than to structural variables or those related to process. CONCLUSIONS: The findings of this study suggest that improvements in the implementation of quality standards in HDCU may include three levels of action: the HDCU, the hospital and a third related to local regulations to access to medicines.

Management of the Psychological Impact of Inflammatory Bowel Disease: Perspective of Doctors and Patients-The ENMENTE Project.

BACKGROUND: To explore the perception of patients and gastroenterologists specialized in inflammatory bowel disease (IBD) on the impact of psychological factors on IBD course and its management. METHODS: Online surveys were sent to patients with IBD recruited from a national patient association and IBD specialists recruited from a national scientific society. These surveys were based on the results of a focus group and discussion group that explored the psychological aspects of IBD. Descriptive statistical analyses were performed, and the physicians' responses regarding impact and management were compared with those of a random patient sample. RESULTS: Responses were obtained from 170 physicians and 903 patients. Most patients emphasized the impact of psychological aspects, namely anxiety and depression, related to suffering from IBD, with 28% declaring that they perceived health professionals to not be interested in this area. A third of the physicians declared not feeling qualified to detect psychological problems. Although 50% of doctors stated that they regularly enquire about these aspects in their clinics, the patients perceived that this was done only 25% of the time. Both groups agreed on the need of a psychologist in IBD care teams. CONCLUSIONS: A discrepancy exists between physician and patient perceptions of the impact of psychological aspects in IBD, with patients perceiving higher impact and more under treatment than physicians. Given the influence of these aspects on patient well-being, it seems advisable to enrich professionals' training, improve the clinical management of psychological aspects of IBD, and probably include psychologists in IBD care teams.

Understanding knee osteoarthritis from the patients' perspective: a qualitative study.

BACKGROUND: No studies of Health Coach Interventions for knee OA sufferers that include patients' perspectives have been published. The study assesses current clinical practice and primary care professionals' advice from the patients' perspective, in order to obtain a participative design for a complex intervention based on coaching psychology. Moreover, wants to analyse the experiences, perceptions, cognitive evaluation, values, emotions, beliefs and coping strategies of patients with knee osteoarthritis, and secondly the impact of these factors in the Self-management of this condition. METHODS: It is an interpretative qualitative study. The study included patients with diagnosis of knee osteoarthritis (OA) from 4 primary health care centres in Barcelona. A theoretical sampling based on a prior definition of participants' characteristics was carried out. Ten semi-structured interviews with knee OA patients were carried out. A content thematic analysis was performed following a mixed-strategy text codification in Lazarus framework and in emerging codes from the data. RESULTS: The results are structured in two blocks: Experiences and perceptions of informants and Experiences of knee osteoarthritis according to the Lazarus model. Regarding experiences and perceptions of informants: Some participants reported that the information was mostly provided by health professionals. Informants know which food they should eat to lose weight and the benefits of weight loss. Moreover, participants explained that they like walking but that sometimes it is difficult to put into practice. Regarding experiences of knee osteoarthritis according Lazarus model: Cognitive evaluation is influenced by cognitive distortions such as obligation, guilt, dramatization and catastrophism. VALUES: Family is the value most associated with wellbeing. Helping others is another recurring value. Emotions: Most participants explain that they feel anxiety, irritability or sadness. Beliefs: To some, physiotherapy helps them feel less pain. However, others explain that it is of no use to them. Participants are aware of the association overweight- pain. Coping strategies: The strategies for coping with emotions aim to reduce psychological distress (anxiety, sadness, anger) and some are more active than others. CONCLUSIONS: The study highlights that patients with knee osteoarthritis require a person-centered approach that provides them with strategies to overcome the psychological distress caused by this condition.

Effectiveness and cost-effectiveness of a health coaching intervention to improve the lifestyle of patients with knee osteoarthritis: cluster randomized clinical trial.

BACKGROUND: The prevalence of osteoarthritis and knee osteoarthritis in the Spanish population is estimated at 17% and 10.2%, respectively. The clinical guidelines concur that the first line treatment for knee osteoarthritis should be non-pharmacological and include weight loss, physical activity and self-management of pain. Health Coaching has been defined as an intervention that facilitates the achievement of health improvement goals, the reduction of unhealthy lifestyles, the improvement of self-management for chronic conditions and quality of life enhancement. The aim of this study is to analyze the effectiveness, cost-effectiveness and cost-utility of a health coaching intervention on quality of life, pain, overweight and physical activity in patients from 18 primary care centres of Barcelona with knee osteoarthritis. METHODS/DESIGN: Methodology from the Medical Research Council on developing complex interventions. Phase 1: Intervention modelling and operationalization through a qualitative, socioconstructivist study using theoretical sampling with 10 in-depth interviews to patients with knee osteoarthritis and 4 discussion groups of 8-12 primary care professionals, evaluated using a sociological discourse analysis. Phase 2: Effectiveness, cost-effectiveness and cost-utility study with a community-based randomized clinical trial. PARTICIPANTS: 360 patients with knee osteoarthritis (180 in each group). Randomization unit: Primary Care Centre. Intervention Group: will receive standard care plus 20-hour health coaching and follow-up sessions. CONTROL GROUP: will receive standard care. MAIN OUTCOME VARIABLE: quality of life as measured by the WOMAC index. Data Analyses: will include standardized response mean and multilevel analysis of repeated measures. Economic analysis: based on cost-effectiveness and cost-utility measures. Phase 3: Evaluation of the intervention programme with a qualitative study. Methodology as in Phase 1. DISCUSSION: If the analyses show the cost-effectiveness and cost-utility of the intervention the results can be incorporated into the clinical guidelines for the management of knee osteoarthritis in primary care. TRIAL REGISTRATION: ISRCTN57405925. Registred 20 June 2014.

Características de la enfermedad ósea de Paget en España. Datos del Registro Nacional de Paget / Characteristics of Paget`s disease in Spain. Data from the National Paget´s Register

Objetivo Describir las características clínicas y epidemiológicas de los sujetos incluidos en el Registro Nacional de Paget. Sujetos y método Registro de pacientes con enfermedad ósea de Paget (EOP), confirmada radiológicamente, de 25 centros participantes. Se recogieron datos clínico epidemiológicos (edad, sexo, fecha y manifestaciones al diagnóstico y tratamientos), calidad de vida (CV) (cuestionario EuroQol de 5 dimensiones), estado de salud, factores ambientales (profesión, antecedentes de sarampión, contacto con animales, consumo de lácteos, condiciones de la vivienda, lugar de nacimiento y domicilio) y familiares (historia de EOP, procedencia de los ascendientes y número de hijos). Se realizó una descripción estadística de los datos. Resultados El registro incluyó a 602 sujetos con edad media de 62 ± 11 años con predominio de varones (55%). El 79% de los sujetos presentaba síntomas en el momento del diagnóstico, fundamentalmente dolor (83%). El 82% de los sujetos había recibido tratamiento, principalmente bisfosfonatos, con más de un fármaco en el 47% de los casos. A pesar del tratamiento, una proporción importante tenía limitación de la CV, especialmente relacionada con dolor (64%), movilidad (47%) y ansiedad junto con malestar (33%). La mayor parte de los sujetos habían estado expuestos a situaciones que se consideran factores de riesgo. El 14% de los sujetos tenía historia familiar de EOP y el 1,5% de los sujetos tenía hijos con EOP. Los ascendientes de los casos familiares procedían con más frecuencia de Ávila, Salamanca, Málaga y La Coruña. Conclusiones El dolor y la limitación de la movilidad disminuyen la CV del sujeto con EOP a pesar del tratamiento. Son frecuentes los antecedentes de exposición a factores de riesgo (AU)

Objectives To describe the clinical and epidemiological characteristics of patients included in the National Register of Paget's disease. Methods A Register of patients with Paget disease (PD), radiologically confirmed, and pertaining to 25 hospitals was analysed. Clinical and epidemiological data were collected, including age, sex, date and presentations at time of diagnosis, treatment, quality of life (QL) (EuroQol 5D) and perceived health, environmental factors (profession, history of measles, contact with animals, dairy consumption, housing conditions, place of birth and address) and family history (PD history, origin of the ancestors, number of children). We conducted a statistical description of the data. Results The register included 602 patients with an average age of 62±11 years and a predominance of male (55%). Of the patients included, 79% showed symptoms at the time of diagnosis, mainly pain (83%); 82% had received treatment, mainly bisphosphonates (47% more than one drug). Despite treatment, a significant proportion had limitations in their QL, especially related to pain (64%), mobility (47%) and anxiety/depression (33%). Most of the patients had been exposed to situations which were considered as risk factors. Of the patients included, 14% had family history of PD and 1.5% had children with PD. The ancestors of the familial cases came more frequently from Avila, Salamanca, La Coruña and Malaga. Conclusions The pain and the limitation of mobility decrease the QL of patients with PD despite treatment. Frequently, patients have a history of exposure to risk factors (AU)

Habilidades de comunicación con el paciente. La perspectiva del psicólogo / Communication skills with patients. The psychologists’ point of view

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[Characteristics of Paget's disease in Spain. Data from the National Paget's Register]. / Características de la enfermedad ósea de Paget en España. Datos del Registro Nacional de Paget.

OBJECTIVES: To describe the clinical and epidemiological characteristics of patients included in the National Register of Paget's disease. METHODS: A Register of patients with Paget disease (PD), radiologically confirmed, and pertaining to 25 hospitals was analysed. Clinical and epidemiological data were collected, including age, sex, date and presentations at time of diagnosis, treatment, quality of life (QL) (EuroQol 5D) and perceived health, environmental factors (profession, history of measles, contact with animals, dairy consumption, housing conditions, place of birth and address) and family history (PD history, origin of the ancestors, number of children). We conducted a statistical description of the data. RESULTS: The register included 602 patients with an average age of 62±11 years and a predominance of male (55%). Of the patients included, 79% showed symptoms at the time of diagnosis, mainly pain (83%); 82% had received treatment, mainly bisphosphonates (47% more than one drug). Despite treatment, a significant proportion had limitations in their QL, especially related to pain (64%), mobility (47%) and anxiety/depression (33%). Most of the patients had been exposed to situations which were considered as risk factors. Of the patients included, 14% had family history of PD and 1.5% had children with PD. The ancestors of the familial cases came more frequently from Avila, Salamanca, La Coruña and Malaga. CONCLUSIONS: The pain and the limitation of mobility decrease the QL of patients with PD despite treatment. Frequently, patients have a history of exposure to risk factors.

Oncologists' perceptions of cancer pain management in Spain: the real and the ideal.

AIM: Studies in some countries suggest that cancer pain is often not adequately controlled, but little is known about the situation in Spain. The objective of this study was to identify medical oncologists' perceptions about pain management in their patients. METHODS: Two-round Delphi survey of 24 medical oncologists from 22 large, geographically diverse hospitals in Spain. Physicians rated each of 150 statements on a Likert scale (1=strongly disagree; 5=strongly agree). The mean, standard deviation and frequency of replies in three agreement categories were calculated for each item. Statements allowing comparison of oncologists' perceptions of how pain is managed in routine clinical practice with how it should be managed were grouped together and analyzed. RESULTS: The most notable discrepancies between the real and the ideal occurred in the failure to provide written information or to confirm that patients understand what they are told, the lack of comprehensive and systematic evaluation of pain, and the lack of use of non-pharmacological treatments (NPTs) for cancer pain. CONCLUSIONS: Medical oncologists need to improve their communication skills, providing patients with both written and verbal information about their disease and the plan for pain management. Pain should be evaluated at each patient visit using validated scales, and greater attention should be paid to the possible use of NPTs.