AVALIAÇÃO DA QUALIDADE DE VIDA RELACIONADA À SAÚDE DE INSULINODEPENDENTES CADASTRADOS NO PROGRAMA DE AUTOMONITORAMENTO GLICÊMICO

Introdução: O diabetes mellitus por se tratar de uma doença progressiva com tendência ao desenvolvimento de complicações crônicas ao decorrer da vida, impõem na vida dos indivíduos acometidos uma série de limitações que influenciam diretamente na qualidade de vida relacionada à saúde. Objetivo: Estimar a percepção da qualidade de vida de pacientes insulinodependentes, testando sua associação com o controle glicêmico. Metodologia: Trata-se de um estudo corte transversal, desenvolvido dentro de uma abordagem quantitativa, cuja coleta de dados foi realizada por meio do instrumento brasileiro resumido Diabetes Quality of Life Measure (DQOL-Brasil-8). A amostra foi constituída por indivíduos acompanhados no programa de automonitoramento glicêmico, em duas Farmácias Públicas Distritais no interior da Bahia. Utilizou-se o software Microsoft Office Excel 2010® e o Statistical Package for the Social Sciences para processamento dos dados e realização de análises descritivas. O estudo foi aprovado pelo Comitê de Ética em Pesquisa (número 3.419.915). Resultados: Foram elegíveis 125 pacientes, no qual observou-se o predomínio de (62,4%; n=78) do sexo feminino e (82,4%; n=103) dos indivíduos referiu diagnóstico de DM2. Somente (13,6%; n=17) dos pacientes apresentaram diabetes controlada. No domínio satisfação, (28,8%; n=36) estão médio satisfeitos com a dieta e vida sexual. Cerca de (50,4%; n=63) dos pacientes se sentem incomodados por ter diabetes e para (48,8%; n=61) a diabetes não interfere na realização de exercícios físicos. Em relação a preocupações sociais/vocacionais, ter filhos não é uma preocupação para (92,8%; n=116) dos indivíduos. Quanto a preocupação com a ocorrência de complicações decorrentes da diabetes e desmaios, (63,2%; n=79) e (31,2%; n=39) estão sempre preocupados. A média geral alcançada pelos domínios avaliados foi de (2,68), indicando uma qualidade de vida regular. Discussão/Conclusão: Pode-se perceber que questões abordadas frequentemente em estudos, ainda influenciam negativamente a vida dos pacientes levando a interferências na qualidade de vida. Desse modo, os achados subjetivos que o instrumento proporciona pode servir como base para profissionais de saúde que desenvolvem atividades clinico-assistenciais, visando incentivar esses profissionais a traçar novas estratégias de cuidado e tornar a monitorização da qualidade de vida dos pacientes diabéticos uma ação rotineira.

Linguistic Validation of Indonesian Version of the Audit of Diabetes-Dependent Quality of Life Questionnaire

Background: One of the impacts experienced by diabetes mellitus patients is a decrease in their quality of life. The Audit of Diabetes-Dependent Quality of Life (ADDQoL) is a widely used individualized diabetes-specific quality of life measure. However, there was no version available in the Indonesian language. Objective: This study is aimed to undertake linguistic validation, including a cultural adaptation of the ADDQoL questionnaire into the Indonesian language. Method: The original developer granted permission to use and modify the questionnaire. The international linguistic validation procedure developed by the Mapi Research Institute was used. There were six steps involved: forward translation, reconciliation, back translation, expert panel review by a psychologist and clinician, cognitive debriefing with diabetes patients, and proofreading. Result: Problems that arose during the linguistic validation process were resolved by finding conceptually equivalent alternatives and changing sentence structures to achieve equivalence in language, concept, and culture with the original version of the ADDQoL. The developer's team reviewed and discussed all actions taken. Cognitive debriefing interviews with five respondents showed that the ADDQoL questionnaire was simple to understand. Conclusion: The Indonesian version of the ADDQoL is linguistically and culturally validated. Further studies are needed to confirm the structure and reliability of the Indonesian ADDQoL.

Re: Caron et al., 2021, sociocultural context and autistics quality of life: A comparison between Quebec and France

The purpose of this letter to the editors is to highlight to the readership of Autism the recommended use of the Autism Quality of Life measure (ASQoL) for research with autistic adults. The ASQoL was developed for use alongside the World Health Organization Quality of Life – Bref (WHOQOL-Bref) and the World Health Organization disabilities module. The letter raises some concerns about the use of the ASQoL as a standalone measure in a recent study by Caron et al. published in Autism. Lay abstract This letter to the editors discusses the use of the ASQoL for research with autistic adults. The autism quality of life measure was developed for use alongside two existing measures of quality of life developed by the World Health Organization. It was not developed as a questionnaire to be used in its own. The letter raises some concerns about the use of the autism quality of life measure as a standalone measure in a recent study by Caron et al., published in Autism.

Re: Caron et al. (2021) sociocultural context and autistics quality of life: A comparison between Quebec and France

The purpose of this letter to the editors is to highlight to the readership of Autism the recommended use of the Autism Quality of Life measure for research with autistic adults. The Autism Quality of Life was developed for use alongside the WHOQoL-BREF and WHO Disabilities module. The letter raises some concerns about the use of the Autism Quality of Life as a stand-alone measure in a recent study by Caron et al. published in Autism.

Validation of a vascular access specific quality of life measure (VASQoL)

Background: A self-administered 11 item vascular access specific quality of life measure (VASQoL) was previously derived from detailed qualitative interviews with adult patients with kidney failure who have experienced vascular access using the Capabilities Approach as a theoretical base. This study reports the psychometric validation of the VASQoL measure including its reliability, content validity and responsiveness to change. Methods: Cognitive interviews were conducted with 23 adult patients with kidney failure after completion of the VASQoL measure. Focus group discussion with a vascular access professional multidisciplinary team was undertaken ( n = 8) and subsequently a further 101 adult kidney failure patients with vascular access (TCVC, AVF or AVG) completed the digital VASQoL measure, EQ-5D and SF-36 questionnaires in a longitudinal study with prospectively recorded vascular access events. Results: Transcript analysis of cognitive interviews after VASQoL completion indicated that the content was comprehensive and well understood by participants. Assessment of Internal reliability for the VASQoL measure was high (Cronbach’s alpha 0.858). Test-retest reliability of the overall VASQoL measure was high (intra class correlation coefficient 0.916). In those patients who experienced a vascular access event, significant differences were observed in paired analysis of the VASQoL physical domain questions and vascular access function domain questions and in the EQ-5D usual activities, pain and anxiety domains. In those with no vascular access event, variation was observed in longitudinal analysis in VASQoL questions relating to worry about VA function and capability domains, whilst no variation was observed in the EQ5D measure. Conclusion: The VASQoL measure has good internal consistency, test-retest reliability, convergent validity and responsiveness to change for clinically relevant vascular access outcomes. This provides a validated, vascular access specific quality of life measure that can be used in future trials of vascular access, evaluation of new technologies and routine use as a patient reported outcome measure (PROM).

Responsiveness of the Spanish Version of Newcastle Stroke-Specific Quality of Life Measure (NEWSQOL)

Objective: To evaluate the responsiveness of the Spanish version of the Newcastle Stroke-specific Quality of Life measure (NEWSQOL) to assess quality of life in Spanish people after suffering a stroke. Design: A prospective observational study was conducted to assess the responsiveness of the Spanish version of NEWSQOL. The sample contained 128 patients who filled in the questionnaires before and after a physical therapy intervention. The responsiveness was assessed with p-values using the effect size (ES) and the standardized response means (SRMs) of the change. Besides, two other external criteria were used to distinguish patients who improved with the treatment from those who remained stable. This classification was based on one functional independence measure (the Barthel Index) and one disability measure (the modified Rankin Scale). Results: There was a statistically significant correlation (Spearman’s coefficient = p < 0.01) between the domains of the Spanish version of NEWSQOL in relation to the Barthel Index and the modified Rankin Scale. All domains showed between marked-to-mild change responsiveness except sleep and relationships; mobility (ES 0.66 and SRM 0.92) and activities of daily living (ES 0.75 and SRM 0.87) were markedly responsive; communication (ES 0.38 and SRM 0.61) was moderately responsive; and pain, vision, cognition, feelings, emotions and fatigue were mildly responsive (ES 0.21-0.41 and SRM 0.23-0.44). Conclusion: The Spanish version of NEWSQOL shows between marked and mild responsiveness to measure the perception of QoL in post-stroke patients. Therefore, its use can be suitable for evaluation studies, clinical trials and clinical practice.

Validation and utility of the Meaning in Life Measure for Turkish university students

The Meaning in Life Measure (MILM) is a new measure for assessing meaning in life by addressing problems associated with existing measures of meaning in life (absence of items related to reflectivity, felt sense, and mattering). For the first time, this study aimed to test the psychometric properties of the MILM for university students in Turkey. We used a sample of 376 university students (Mage=24.03±4.65 years) who participated in an online survey including the MILM, the Adult Dispositional Hope Scale, and the Depression, Anxiety, and Stress Scale – 21. To study the factor structure of the MILM, we firstly employed a dual approach including exploratory and confirmatory factor analysis, which provided support for the goodness of a two-factor model (experience and reflectivity). We secondly tested the convergent and predictive validity of the measure by respectively applying correlation and regression analyses. Our findings supported the convergent validity of the MILM, showing correlations with hope, anxiety, and depression. The predictive validity was also confirmed; the experience subscale of MILM uniquely predicted hope, anxiety, and depression after controlling for covariates (age and gender). Thirdly, our findings showed that the MILM and its subscales had high internal consistency reliability. The Turkish version of the MILM is provided to be a reliable and valid instrument for assessing meaning in life for university students in Turkey.