Validity of two common asthma-specific quality of life questionnaires: Juniper mini asthma quality of life questionnaire and Sydney asthma quality of life questionnaire

Background This study explored the psychometric properties (internal consistency, construct validity, discriminative ability) of the Juniper Mini Asthma Quality of Life Questionnaire (Mini AQLQ-J) and the Sydney Asthma Quality of Life Questionnaire (AQLQ-S). Methods One hundred fourty-six adults (18-45 years) with asthma requiring regular inhaled corticosteroids were recruited to a trial of written emotional disclosure. Correlational analyses were performed to understand the relationship of the two measures with each other, with symptoms, lung function, asthma control, asthma bother and generic quality of life. Median quality of life scores were compared according to gender, health care usage and levels of asthma severity. Results AQLQ-J and AQLQ-S total scores correlated strongly with each other (rho = -0.80) and moderately with the EuroQol Current Health Status Scale (AQLQ-J: rho = 0.35; AQLQ-S: rho = -0.40). Domain score correlations between AQLQ-J and AQLQ-S were mostly moderate (0.5 < rho < 0.8). Both QoL measures were significantly correlated with symptom score. Correlations with the symptom score asthma module (AQLQ-J: rho = -0.69; AQLQ-S: rho = 0.50) were stronger compared with the total symptom score and the symptom score rhinitis module (AQLQ-J: rho = -0.41; AQLQ-M: rho =0.31). Neither QoL measure was significantly correlated with FEV1 % predicted at the total or the domain level. Total scores of both measures were significantly correlated with subjective asthma control (AQLQ-J: rho = 0.68; AQLQ-S: rho = -0.61) and asthma bother (AQLQ-J: rho = -0.73; AQLQ-M: rho = 0.73). Conclusions This study provides further evidence for the validity of the AQLQ-J and the AQLQ-S in a British population of adult patients with asthma managed in primary care. Correlations with lung function parameters were weak or absent. Correlations with generic quality of life were moderate, those with asthma symptoms, asthma control and asthma bother were strong. Both measures are able to discriminate between levels of asthma severity

Validation of the German Day-to-Day Impact of Vaginal Aging (DIVA) Questionnaire in Peri- and Postmenopausal Women.

BACKGROUND The Day-to-Day Impact of Vaginal Aging (DIVA) questionnaire is a validated patient-reported outcome measure (PROM) capturing the impacts of vaginal symptoms in postmenopausal women. AIM We aimed to psychometrically validate the German version of the DIVA questionnaire. METHODS Data was collected online and by paper-pencil. We ran confirmatory factor analyses to confirm the a priori four-factor structure of the DIVA. Internal consistency was calculated using Cronbach's alpha. Correlations with other outcome measures such as the Patient Health Questionnaire-4 (PHQ-4), the SF-12 SOEP (socio-economic panel) version and self-created anchor questions were calculated regarding convergent validity. Known groups regarding age, home country and disease severity were analyzed. Test-retest reliability after 1 week and responsiveness after 4 weeks were only descriptively assessed due to low sample sizes. MAIN OUTCOME MEASURES The DIVA questionnaire, the Menopause Rating Scale (MRS II), the PHQ-4 and the SF-12 SOEP version were the main outcome measures. RESULTS 185 postmenopausal women reporting vaginal complaints participated in the survey. The mode of administration did not influence the severity of vaginal symptoms. The four-factor structure of the DIVA could be confirmed and the model fit indicated sufficient structural validity. Furthermore, strong internal consistency in all of the DIVA domains was found. Regarding convergent validity, no hypothesis has failed completely. The results regarding known-groups validity were mostly in line with our a priori hypotheses. Descriptive evidence for sufficient test-retest reliability and responsiveness was given, however, the sample size for the assessment of those two measurement properties was low. CONCLUSION This study supports the excellent structural validity, internal consistency and construct validity of the German version of the DIVA questionnaire. It can be recommended for the assessment of the impacts of vaginal symptoms in postmenopausal women in future clinical GSM trials. Gabes M, Stute P, Apfelbacher C. Validation of the German Day-to-Day Impact of Vaginal Aging (DIVA) Questionnaire in Peri- and Postmenopausal Women. Sex Med 2021;9:100382

Measurement properties of quality-of-life outcome measures for children and adults with eczema: an updated systematic review

Objective The aim of this updated systematic review was to systematically assess the measurement properties of previously discussed and new quality‐of‐life patient‐reported outcome measures (PROMs) in children and adults with eczema using the new COSMIN guideline. Methods A systematic literature search was conducted in PubMed and EMBASE. Eligible studies reported on measurement properties of quality‐of‐life PROMs for children and adults with eczema. The methodological quality of selected already known PROMs and new evidence identified through the literature search was assessed with the COSMIN Risk of Bias checklist. The adequacy of included PROMs was judged with updated quality criteria, and the quality of evidence of the summarized results was graded. Finally, PROMs were placed in a recommendation category (A‐C). Results In total, 133 measurement properties of nine different PROMs were assessed. No PROM could be placed in category A due to a lack of validation studies. Only the DLQI fulfilled the criteria for category C and therefore should not be recommended for use. All other PROMs were placed in category B, that is, they still have the opportunity to be recommended, but need further validation. Conclusions Currently, no PROM for quality of life can be recommended for use in children and adults with eczema. Further validation is needed. The DLQI cannot be recommended for future use

Validity of three asthma-specific quality of life questionnaires: the patients’ perspective

Objectives: It is not known which of the many asthma-specific quality of life (QoL) questionnaires best capture the lived experience of people with asthma. The objective of this study was to explore patients' views of three commonly used asthma-specific QoL questionnaires. Design: Qualitative study using semistructured interviews. Setting: Primary and secondary care in Brighton and Hove, UK. Participants: 30 adult people with a physician-diagnosis of asthma who were asked to complete the Juniper Asthma Quality of Life Questionnaire (AQLQ-J), the Sydney Asthma Quality of Life Questionnaire (AQLQ-S) and the Living with Asthma Questionnaire (LWAQ) to elicit their views on the content validity of these. Results: Thematic content analysis revealed a lack of congruence between the concerns of people with asthma and the questionnaire content in terms of missing (eg, allergies) and irrelevant (eg, smoky restaurants) content. The AQLQ-J was perceived as a ‘narrow’, ‘medical’ questionnaire focused on symptoms, the environment and functional ability. In contrast, the LWAQ and the AQLQ-S were perceived to be ‘non-medical’. The LWAQ was described as a ‘test’ and as a wide-ranging, embracing and holistic questionnaire. Its strong emotional focus was irritating to some. The AQLQ-S was described as a simple, quick and easy questionnaire, although there was a perception that it was lacking in depth. Conclusions: Patient interviews highlighted strengths and shortcomings in the content validity of these three asthma-specific questionnaires. For patients, the AQLQ-S content seemed to be the most pertinent in its adequacy of coverage of medical, social and emotional aspects of health-related QoL in asthma

Implementing the Patient Needs in Asthma Treatment (NEAT) questionnaire in routine care:a qualitative study among patients and health professionals

Abstract Background Many patients with asthma report unmet health care needs. The Patient Needs in Asthma Treatment (NEAT) questionnaire is a validated instrument to quantify these unmet needs. We explored how health professionals evaluated the instrument’s utility as well as patients’ and professionals’ perspectives of how NEAT could be incorporated into routine clinical practice. Methods Qualitative interviews were conducted by telephone between February and September 2021 with 19 patients with asthma and 21 health professionals (i.e., general practitioners, pneumologists, health professionals in pulmonary rehabilitation, and medical assistants). Interview recordings were transcribed verbatim and content-analyzed using both deductive and inductive approaches using MAXQDA. Results Health professionals could see the potential value of using NEAT to inform clinical decisions. However, health professionals tended to be skeptical towards the routine use of NEAT in outpatient settings, mainly due to a lack of time. Implementation of NEAT was seen as more valuable in the context of patient education (i.e., in Disease Management Programs [DMPs] or pulmonary rehabilitation) by patients and health professionals alike, because it offered greater opportunities to address any unmet needs identified. Both patients and health professionals considered it more useful to use the questionnaire for the first time some time after the initial diagnosis has been made (e.g., when the treatment regime is found rather than at time of initial diagnosis). In the context of DMPs and pulmonary rehabilitation, NEAT could be used twice, i.e., before and after patient education to support patient-centered planning and evaluation. Conclusion Both patients and health professionals consider the use of the NEAT, in particular in educational programs (i.e., during DMPs or pulmonary rehabilitation), as feasible and useful. There is now a need to undertake a feasibility trial in routine care

Pediatricians’ experiences of managing outpatient care during the COVID-19 pandemic: A qualitative study in Germany

BackgroundPediatricians are important sources of information for parents regarding their children's health. During the COVID-19 pandemic, pediatricians faced a variety of challenges regarding information uptake and transfer to patients, practice organization and consultations for families. This qualitative study aimed at shedding light on German pediatricians’ experiences of providing outpatient care during the first year of the pandemic.MethodsWe conducted 19 semi-structured, in-depth interviews with pediatricians in Germany from July 2020 to February 2021. All interviews were audio recorded, transcribed, pseudonymized, coded, and subjected to content analysis.ResultsPediatricians felt able to keep up to date regarding COVID-19 regulations. However, staying informed was time consuming and onerous. Informing the patients was perceived as strenuous, especially when political decisions had not been officially communicated to pediatricians or if the recommendations were not supported by the professional judgment of the interviewees. Some felt that they were not taken seriously or adequately involved in political decisions. Parents were reported to consider pediatric practices as sources of information also for non-medical inquiries. Answering these questions was time consuming for the practice personnel and involved non-billable hours. Practices had to adapt their set-up and organization immediately to the new circumstances of the pandemic, which proved costly and laborious as well. Some changes in the organization of routine care, such as the separation of appointments for patients with acute infection from preventive appointments, were perceived as positive and effective by some study participants. Telephone and online consultations were established at the beginning of the pandemic and considered helpful for some situations, whereas for others these methods were deemed insufficient (e.g. for examinations of sick children). All pediatricians reported reduced utilization mainly due to a decline in acute infections. However, preventive medical check-ups and immunization appointments were reported to be mostly attended.ConclusionPositive experiences of reorganizing pediatric practice should be disseminated as “best practices” in order to improve future pediatric health services. Further research could show how some of these positive experiences in reorganizing care during the pandemic are to be maintained by pediatricians in the future

Measurement properties of quality-of-life measurement instruments for infants, children and adolescents with eczema: a systematic review

Background: Quality of life (QoL) is one of the core outcome domains identified by the Harmonising Outcome Measures for Eczema (HOME) initiative to be assessed in every eczema trial. There is uncertainty about the most appropriate QoL instrument to measure this domain in infants, children and adolescents. Objectives: To systematically evaluate the measurement properties of existing measurement instruments developed and/or validated for the measurement of QoL in infants, children and adolescents with eczema. Methods: A systematic literature search in PubMed and EMBASE, complemented by a thorough hand search of reference lists, retrieved studies on measurement properties of eczema QoL instruments for infants, children and adolescents. For all eligible studies, we judged the adequacy of the measurement properties and the methodological study quality with the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Results from different studies were summarized in a best evidence synthesis and formed the basis to assign four degrees of recommendation. Results: 17 articles, 3 of which were found by hand search, were included. These 17 articles reported on 24 instruments. No instrument can be recommended for use in all eczema trials because none fulfilled all required adequacy criteria. With adequate internal consistency, reliability and hypothesis testing, the US version of the Childhood Atopic Dermatitis Impact Scale (CADIS), a proxy-reported instrument, has the potential to be recommended depending on the results of further validation studies. All other instruments, including all self-reported ones, lacked significant validation data. Conclusions: Currently, no QoL instrument for infants, children and adolescents with eczema can be highly recommended. Future validation research should primarily focus on the CADIS, but also attempt to broaden the evidence base for the validity of self-reported instruments

Association of analgosedation with psychiatric symptoms and health-related quality of life in ARDS survivors: post hoc analyses of the DACAPO study

Background The acute respiratory distress syndrome (ARDS) is a life-threatening condition with the risk of developing hypoxia and thus requires for invasive mechanical ventilation a long-term analgosedation. Yet, prolonged analgosedation may be a reason for declining health-related quality of life (HRQoL) and the development of psychiatric disorders. Methods We used data from the prospective observational nation‑wide ARDS study across Germany (DACAPO) to investigate the influence of sedation and analgesia on HRQoL and the risk of psychiatric symptoms in ARDS survivors 3, 6 and 12 months after their discharge from the intensive care unit (ICU). HRQoL was measured with the Physical and Mental Component Scale of the Short‑Form 12 Questionnaire (PCS‑12, MCS‑12). The prevalence of psychiatric symptoms (depression and post‑traumatic stress disorder [PTSD]) was assessed using the Patient Health Questionnaire‑9 and the Post‑Traumatic Stress Syndrome‑14. The associations of analgosedation with HRQoL and psychiatric symptoms were investigated by means of multivariable linear regression models. Results The data of 134 ARDS survivors (median age [IQR]: 55 [44–64], 67% men) did not show any significant association between analgosedation and physical or mental HRQoL up to 1 year after ICU discharge. Multivariable linear regression analysis (B [95%‑CI]) yielded a significant association between symptoms of psychiatric disorders and increased cumulative doses of ketamine up to 6 months after ICU discharge (after 3 months: depression: 0.15 [0.05, 0.25]; after 6 months: depression: 0.13 [0.03, 0.24] and PTSD: 0.42 [0.04, 0.80)]). Conclusions Up to 1 year after ICU discharge, analgosedation did not influence HRQoL of ARDS survivors. Prolonged administration of ketamine during ICU treatment, however, was positively associated with the risk of psychiatric symptoms. The administration of ketamine to ICU patients with ARDS should be with caution

Determinants of patients' needs in asthma treatment:a cross-sectional study

Patients’ needs in asthma remain insufficiently understood and met. We therefore aimed to investigate the potential determinants of patients’ needs in asthma treatment. Our study was based on survey data on 189 adults with asthma. Needs were measured using the 13-item Needs in Asthma Treatment questionnaire, which yields a total score and subscale-specific scores (‘exacerbations’, ‘patient expertise’, ‘handling drugs’ and ‘drug effects’). We considered age, sex, education, years since diagnosis and anxiety/depression (measured by the Patient Health Questionnaire-4) as potential determinants. Associations were estimated by multivariable linear regression. Overall, we observed that younger age, poor mental health and a more recently established asthma diagnosis were independently associated with increased needs. Information on drug effects was an exception to this pattern as the need in that domain was solely determined by sex (being greater in men). In conclusion, our study provides novel evidence on patient characteristics that are associated with needs in asthma treatment. If confirmed by future studies, our observations may assist healthcare professionals to identify asthma patients with potentially elevated information, support and training needs and could contribute to the development of tailored interventions