Evaluación cualitativa de una intervención para reducir la pobreza energética

OBJECTIVE: To evaluate the “Energía, la justa” program, aimed at reducing energy poverty in the city of Barcelona, from the point of view of the target population and the workers involved in the intervention. METHODS: A qualitative, descriptive and exploratory pilot study was carried out, with a phenomenological approach. Twelve semi-structured interviews were conducted: to three users, three energy agents who performed interventions in the homes, and six professionals who participated in the program coordination. A thematic content analysis was carried out using Atlas-ti software. Interviews were conducted between October 2016 and March 2017. RESULTS: Trust in a contact person (e.g. social workers) facilitated the participation, although there were difficulties reaching people who had illegal energy supplies, immigrant women or immigrants who subrent properties. Regarding implementation, home visits, energy efficiency advice and the relationship with energy agents were the best assessed aspects. However, not being able to carry out reforms in deteriorated dwellings was considered a limitation. The program also contributed to raise awareness on energy rights, to save on utility bills and to generate tranquility and social support. CONCLUSIONS: Programs such as this one can promote energy empowerment and improve psychosocial status. However, strategies with a gender and equity perspective should be considered to reach other vulnerable groups.OBJETIVO: Conocer las valoraciones del programa “Energía, la justa” orientado a reducir la pobreza energética en la ciudad de Barcelona, desde la perspectiva de las personas destinatarias y de las personas trabajadoras involucradas en la intervención. MÉTODOS: Estudio piloto realizado con metodología cualitativa, de tipo descriptivo y exploratorio, analizado desde un enfoque fenomenológico. Se realizaron 12 entrevistas semi-estructuradas: a tres personas destinatarias, a tres agentes energéticos que realizaron intervención en los hogares y a seis profesionales que participaron en la coordinación del programa. Se realizó un análisis de contenido temático mediante el software Atlas-ti. Las entrevistas se realizaron entre octubre de 2016 y marzo de 2017. RESULTADOS: La confianza con una persona de contacto (por ejemplo, trabajadoras sociales) facilitó la participación, pero hubo dificultad para acceder a personas que tenían los suministros ilegales, mujeres inmigrantes o inmigrantes que subalquilaban pisos. Respecto a la implementación, las visitas domiciliarias, el asesoramiento en materia de eficiencia energética y la relación con los agentes energéticos, fueron los aspectos mejor valorados. Sin embargo, se consideró como limitación no poder realizar reformas en viviendas muy deterioradas. A nivel de impacto, el programa contribuyó al conocimiento de los derechos energéticos, a ahorrar en las facturas de los suministros y a generar mayor tranquilidad y soporte social. CONCLUSIONES: Programas como este fomentan el empoderamiento en materia energética y producen mejoras a nivel psicosocial. No obstante, se deberían desarrollar estrategias con perspectiva de género y de equidad para llegar a otros colectivos especialmente vulnerable

Comparison of the web-based and digital questionnaires of the Spanish and Catalan versions of the KIDSCREEN-52

Background: The objectives of the study were to develop web-based Spanish and Catalan versions of the KIDSCREEN, and to compare scores and psychometric properties with the paper version. Methods: Internet and paper Spanish and Catalan versions of the KIDSCREEN-52 were included in a cross-sectional study in school-age children. Web-based and paper Spanish or Catalan versions of the KIDSCREEN-52 were administered to students aged 8 to 18 years from primary and secondary schools in Palafolls (Barcelona, Spain, n5923). All students completed both web-based and paper versions during school time with an interval of at least 2 hours between administrations. The order of administration was randomized. The KIDSCREEN-52, the Strengths and Difficulties Questionnaire (SDQ), and sociodemographic variables were collected. Missing values, floor and ceiling effects, and internal consistency were compared between both versions, as well as mean score differences, level of agreement, and known groups and construct validity. Results: Participation rate was 77% (n5715). Web-based and paper versions showed low percentage of missing values and similar high ceiling effect (range 0 to 44%). Mean score differences showed an effect size (ES) lower than 0.2 in all dimensions. Internal consistency ranged from 0.7 to 0.88, and degree of agreement was excellent (Intraclass correlation coefficient [ICC] range 0.75 to 0.87). Expected differences were seen by sex, age, socioeconomic status and mental health status. Conclusions: The web-based KIDSCREEN-52 showed similar scale score and reliability and validity than the paper version. It will incorporate the child population in the assessment of quality of life providing a more attractive format

Systematic Collaborative Reanalysis of Genomic Data Improves Diagnostic Yield in Neurologic Rare Diseases

Altres ajuts: Generalitat de Catalunya, Departament de Salut; Generalitat de Catalunya, Departament d'Empresa i Coneixement i CERCA Program; Ministerio de Ciencia e Innovación; Instituto Nacional de Bioinformática; ELIXIR Implementation Studies (CNAG-CRG); Centro de Investigaciones Biomédicas en Red de Enfermedades Raras; Centro de Excelencia Severo Ochoa; European Regional Development Fund (FEDER).Many patients experiencing a rare disease remain undiagnosed even after genomic testing. Reanalysis of existing genomic data has shown to increase diagnostic yield, although there are few systematic and comprehensive reanalysis efforts that enable collaborative interpretation and future reinterpretation. The Undiagnosed Rare Disease Program of Catalonia project collated previously inconclusive good quality genomic data (panels, exomes, and genomes) and standardized phenotypic profiles from 323 families (543 individuals) with a neurologic rare disease. The data were reanalyzed systematically to identify relatedness, runs of homozygosity, consanguinity, single-nucleotide variants, insertions and deletions, and copy number variants. Data were shared and collaboratively interpreted within the consortium through a customized Genome-Phenome Analysis Platform, which also enables future data reinterpretation. Reanalysis of existing genomic data provided a diagnosis for 20.7% of the patients, including 1.8% diagnosed after the generation of additional genomic data to identify a second pathogenic heterozygous variant. Diagnostic rate was significantly higher for family-based exome/genome reanalysis compared with singleton panels. Most new diagnoses were attributable to recent gene-disease associations (50.8%), additional or improved bioinformatic analysis (19.7%), and standardized phenotyping data integrated within the Undiagnosed Rare Disease Program of Catalonia Genome-Phenome Analysis Platform functionalities (18%)

Development of the web-based Spanish and Catalan versions of the Euroqol 5D-Y (EQ-5D-Y) and comparison of results with the paper version.

BACKGROUND: The objectives of the study were to develop web-based Spanish and Catalan versions of the EQ-5D-Y, and to compare scores and psychometric properties with the paper version. METHODS: Web-based and paper versions of EQ-5D-Y were included in a cross-sectional study in Palafolls (Barcelona), Spain and administered to students (n = 923) aged 8 to 18 years from 2 primary and 1 secondary school and their parents. All students completed both the web-based and paper versions during school time with an interval of at least 2 h between administrations. The order of administration was randomized. Participants completed EQ-5D-Y, a measure of mental health status (the Strengths and Difficulties Questionnaire), and sociodemographic variables using a self-administered questionnaire. Parents questionnaire included parental level of education and presence of chronic conditions in children. Missing values, and floor and ceiling effects were compared between versions. Mean score differences were computed for the visual analogue scale (VAS). Percentage of agreement, kappa index (k) and intraclass correlation coefficient (ICC) were computed to analyze the level of agreement between web-based and paper versions on EQ-5D-Y dimensions and VAS. Known groups validity was analyzed and compared between the two formats. RESULTS: Participation rate was 77 % (n = 715). Both formats of EQ-5D-Y showed low percentages of missing values (n = 2, and 4 to 9 for web and paper versions respectively), and a high ceiling effect by dimension (range from 79 % to 96 %). Percent agreement for EQ-5D-Y dimensions on the web and paper versions was acceptable (range 89 % to 97 %), and k ranged from 0.55 (0.48-0.61, usual activities dimension) to 0.75 (0.68-0.82, mobility dimension). Mean score difference on the VAS was 0.07, and the ICC for VAS scores on the two formats was 0.84 (0.82-0.86). Both formats showed acceptable ability to discriminate according to self-perceived health, reporting chronic conditions, and mental health status. CONCLUSIONS: The digital EQ-5D-Y showed almost identical VAS scores and acceptable levels of agreement on dimensions. Both formats demonstrated acceptable levels of construct validity. Availability of the Spanish and Catalan web-version will facilitate its use in HRQOL assessment and in economic evaluation.The study was financed by the Spanish Ministry of Health, contract N° PI12/01296

Comparison of the web and paper versions of the KIDSCREEN by mental health status according to the Strengths and Difficulties Questionnaire (SDQ, probable case), Palafolls study, 2013 (n = 682–713).

<p>PHY Physical well-being; PSY: Psychological well-being; ME: Moods and emotions; AU: Autonomy: SP: Self-perception; PA: Parent Relation and Home Life; PE: Social Support and Peers; SC: School Environment; BU: Social Acceptance (bullying); FI: Financial Resources; KS-10 Index: KIDSCREEN-10 Index.</p><p>Comparison of the web and paper versions of the KIDSCREEN by mental health status according to the Strengths and Difficulties Questionnaire (SDQ, probable case), Palafolls study, 2013 (n = 682–713).</p

Sociodemographic characteristics of the 713 participants in a comparison of digital and paper versions of the Spanish and Catalan versions of the KIDSCREEN-52.

<p>SD: standard deviation. Missing value: age (2); sex (2); type of family (33); family affluence scale (18); level of education (65); order of administration (2).</p><p>Sociodemographic characteristics of the 713 participants in a comparison of digital and paper versions of the Spanish and Catalan versions of the KIDSCREEN-52.</p

Comparison of scores according to the language (Spanish or Catalan) and order of administration (web or paper first) first (n = 682–713), Palafolls study, 2013.

<p>SD: standard deviation; ES: Standardized mean differences (effect size). Missing values: web version (2); paper version (ranged from n = 7 for BU to n = 30 for the KDS-10 Index). PHY Physical well-being; PSY: Psychological well-being; ME: Moods and emotions; AU: Autonomy: SP: Self-perception; PA: Parent Relation and Home Life; PE: Social Support and Peers; SC: School Environment; BU: Social Acceptance (bullying); FI: Financial Resources.</p><p>Comparison of scores according to the language (Spanish or Catalan) and order of administration (web or paper first) first (n = 682–713), Palafolls study, 2013.</p

Level of agreement of web and paper versions of the KIDSCREEN-52 (n = 682–713). Palafolls study, 2013.

<p>95%CI: 95% confidence interval; ICC: intraclass correlation coefficient. PHY Physical well-being; PSY: Psychological well-being; ME: Moods and emotions; AU: Autonomy: SP: Self-perception; PA: Parent Relation and Home Life; PE: Social Support and Peers; SC: School Environment; BU: Social Acceptance (bullying); FI: Financial Resources; KS-10 Index: KIDSCREEN-10 Index.</p><p>Level of agreement of web and paper versions of the KIDSCREEN-52 (n = 682–713). Palafolls study, 2013.</p

Comparison of scores, floor and ceiling effect, and internal consistency coefficients between the web and paper versions of the KIDSCREEN (n = 682–713), Palafolls study, 2013.

<p>SD: standard deviation; ES: Standardized mean differences (effect size). Missing values: web version (2); paper version (ranged from n = 7 for BU to n = 30 for the KDS-10 Index). PHY Physical well-being; PSY: Psychological well-being; ME: Moods and emotions; AU: Autonomy: SP: Self-perception; PA: Parent Relation and Home Life; PE: Social Support and Peers; SC: School Environment; BU: Social Acceptance (bullying); FI: Financial Resources; KS-10 Index: KIDSCREEN-10 Index.</p><p>Comparison of scores, floor and ceiling effect, and internal consistency coefficients between the web and paper versions of the KIDSCREEN (n = 682–713), Palafolls study, 2013.</p