Exploring the values, preferences, and information needs of patients with NKX2-1-related disorders: A qualitative study protocol.

BACKGROUND: NKX2-1-related disorders have a prevalence of 1:500,000 and are therefore considered a rare condition according to the European Commission's definition. The European Reference Network of Rare Neurological Disorders is developing the first clinical practice guideline on the management of this condition, with the support of the Andalusian Health Technology Assessment Area, Endo-ERN, ERN-Lung and Imegen, within the framework of the ERNs Guidelines programme (DG SANTE/2018/B3/030). Within the scope of this programme, it becomes necessary to explore the patient perspective in order to include it in the ongoing clinical practice guideline and accompanying patient information booklet. METHODS AND ANALYSIS: This study will use qualitative methods to explore the values, preferences and information needs of patient with NKX2-1-related disorders and their caregivers. Participants will come from a variety of countries throughout Europe. One focus group and four semi-structured interviews will be conducted. Pairs will analyse the data using Grounded Theory. The Andalusian Regional Ministry of Health's Ethics Coordinating Committee for Biomedical Research (Sevilla, Andalucía, Spain) has approved this study protocol (29/03/2022). DISCUSSION: This is the first study to explore the values, preferences, and information needs of patients with NKX2-1-related disorders. The proposed study's findings will contribute to the generation of useful knowledge that will provide guidance to improve the care given to patients with the studied condition. While this study will provide valuable insights into the perspectives of patients with NKX2-1-related disorders, the findings are unlikely to be generalizable to patients with other conditions.

Efectividad de los programas de deshabituación tabáquica para enfermos mentales graves / Effectiveness of smoking cessation programs for seriously mentally ill

Introducción. Numerosas investigaciones señalan la asociación significativa entre enfermedad mental y fumar, relativamente independiente de factores socioculturales. El objeto de este estudio fue examinar las estrategias eficaces para la deshabituación tabáquica en adultos con depresión mayor, esquizofrenia y psicosis. Material y métodos. Se ha realizado una búsqueda bibliográfica extensa en Medline, Embase, Psyc INFO, Cochrane Library, Centre for Reviews and Dissemination, ECRI, clinical trials. gov, UK National Research Register, Current Controlled Trials, Trip Database, NLM Gateway, Networked Digital Library of Theses and Dissertations (electronic theses and dissertations (ETDs)), TESEO, Dialnet, Lilacs, Scielo, IME, Doymay Catalogue et Index des Sites Médicaux Francophones. Se seleccionaron todas las revisiones sistemáticas, informes completos, ensayos clínicos, estudios observacionales y recomendaciones, que hubieran evaluado programas de deshabituación tabáquica en enfermos con patología mental grave. Resultados. Existen pocos estudios que se centren en la deshabituación tabáquica en enfermos mentales graves. En el tratamiento del tabaquismo en pacientes que padecen alguna de estas patologías mentales es conveniente: incrementar y prolongar el tiempo de tratamiento, poner en práctica técnicas conjuntas de psicoeducación, cognitivo conductuales y la utilización de algún tratamiento farmacológico que ayude a controlar y/o reducir la aparición de recaídas en el consumo de tabaco o en la sintomatología psiquiátrica de base. No obstante, existe una gran heterogeneidad en las recomendaciones de los estudios. Conclusiones. Permanece confuso si las personas con enfermedad mental grave pueden beneficiarse del acceso a tratamientos de deshabituación tabáquica. En el mejor de los casos, la terapia farmacológica y las intervenciones psicosociales apuntan a la abstinencia a los 6 meses para muy pocos pacientes (AU)

Introduction. Many studies have supported the significant association between mental illness and smoking habit, with relative independence of sociocultural factors. The aim of this study was to review effective strategies for smoking cessation of adults with major depression, schizophrenia and psychosis. Material and methods. An extensive literature search was performed in Medline, Embase, Psyc INFO, Cochrane Library, Center for Reviews and Dissemination, ECRI,clinicaltrials.gov, UK National Research Register, Current Controlled Trials, Trip Database, NLM Gateway, Networked Digital Library of Theses and Dissertations (electronic theses and dissertations (ETDs)), TESEO, Dialnet, Lilacs, SciELO, EMI, Doyma, and Catalogue et Index des Sites Medical Francophones. We selected all systematic reviews, comprehensive reports, clinical trials, observational studies and recommendations, which had evaluated smoking cessation programs in patients with severe mental illness. Results. Few studies focusing on smoking cessation in severe mental illness were found. In the treatment of smokers who suffer these mental disorders, it is recommended to increase and prolong the treatment period, to implement joint psycho education techniques, cognitive-behavioral techniques and the use of any drug treatment that helps to control and / or reduce the occurrence of relapses in tobacco consumption or baseline psychiatric symptoms. However, there is great heterogeneity in the recommendations given by the studies. Conclusions. It remains unclear whether people with severe mental illness could benefit from access to smoking cessation treatments. In the best of the scenarios, it was seen that drug therapy and psychosocial interventions have indicated abstinence at 6 months for a few patients (AU)

Effectiveness of smoking cessation programs for seriously mentally ill.

INTRODUCTION: Many studies have supported the significant association between mental illness and smoking habit, with relative independence of socio-cultural factors. The aim of this study was to review effective strategies for smoking cessation of adults with major depression, schizophrenia and psychosis. MATERIAL AND METHODS: An extensive literature search was performed in Medline, Embase, PsycINFO, Cochrane Library, Center for Reviews and Dissemination, ECRI, clinicaltrials.gov, UK National Research Register, Current Controlled Trials, Trip Database, NLM Gateway, Networked Digital Library of Theses and Dissertations (electronic theses and dissertations (ETDs)), TESEO, Dialnet, Lilacs, SciELO, EMI, Doyma, and Catalogue et Index des Sites Medical Francophones. We selected all systematic reviews, comprehensive reports, clinical trials, observational studies and recommendations, which had evaluated smoking cessation programs in patients with severe mental illness. RESULTS: Few studies focusing on smoking cessation in severe mental illness were found. In the treatment of smokers who suffer these mental disorders, it is recommended to increase and prolong the treatment period, to implement joint psychoeducation techniques, cognitive-behavioral techniques and the use of any drug treatment that helps to control and / or reduce the occurrence of relapses in tobacco consumption or baseline psychiatric symptoms. However, there is great heterogeneity in the recommendations given by the studies. CONCLUSIONS: It remains unclear whether people with severe mental illness could benefit from access to smoking cessation treatments. In the best of the scenarios, it was seen that drug therapy and psychosocial interventions have indicated abstinence at 6 months for a few patients.