Springer Science and Business Media LLC

Management of atopic dermatitis (AD) typically requires application of topical treatments, often multiple times a day. The cosmetic properties and burdensome application of these treatments can be detrimental to quality of life (QoL). Patients who achieve good disease control through use of systemic therapies may reduce the frequency and amount of topical applications, improving QoL. This study aimed to quantify the utility and disutility for topical AD treatment processes. Seven vignettes describing different skincare regimens for people with moderate-to-severe AD were developed with input from healthcare professionals. 484 respondents from the general population completed time trade-off items for each vignette. Utility values for each regimen, and disutilities associated with the impact of changes to skincare regimens, were calculated. Analysis of variance assessed differences between skincare regimens. As skincare regimens increased in intensity (0.7968 for the most intense; 0.9999 for the least), utility values decreased. There were no statistically significant differences between skincare regimens followed by patients with good disease control (0.9862 to 0.9999); however, when compared to those involving topical corticosteroids and emollient combinations (0.7968 to 0.8835), significant differences were observed (p < 0.001). The largest disutilities (0.1521 to 0.1705) were between skincare regimens describing the use of topical corticosteroids plus emollient and those followed by patients with good disease control. The application of topical treatments has a detrimental effect on QoL, which increases with the duration and frequency of applications. Further research is needed to investigate how health and process utilities interact and both can be integrated into medical decision-making.

Objective: To determine the level of diabetes-related symptom distress and its association with negative mood in subjects participating in a targeted population-screening program, comparing those identified as having type 2 diabetes vs. those who did not. Research design and methods: This study was conducted within the framework of a targeted screening project for type 2 diabetes in a general Dutch population (age 50–75 years). The study sample consisted of 246 subjects, pre-selected on the basis of a high-risk profile; 116 of whom were subsequently identified as having type 2 diabetes, and 130 who were non-diabetic subjects. Diabetes-related symptom distress and negative mood was assessed ∼2 weeks, 6 months, and 12 months after the diagnosis of type 2 diabetes, with the Type 2 Diabetes Symptom Checklist and the Negative well-being sub scale of the Well-being Questionnaire (W-BQ12), respectively. Results: Screening-detected diabetic patients reported significantly greater burden of hyperglycemic (F=6.0, df=1, p=0.015) and of fatigue (F=5.3, df=1, p=0.023) symptoms in the first year following diagnosis type 2 diabetes compared to non-diabetic subjects. These outcomes did not change over time. The total symptom distress (range 0–4) was relatively low for both screening-detected diabetic patients (median at ∼2 weeks, 6 months, and 12 months; 0.24, 0.24, 0.29) and non-diabetic subjects (0.15, 0.15, 0.18), and not significantly different. No average difference and change over time in negative well-being was found between screening-detected diabetic patients and non-diabetic subjects. Negative well-being was significantly positive related with the total symptom distress score (regression coefficient β=2.86, 95% CI 2.15–3.58). Conclusions: The screening-detected diabetic patients were bothered more by symptoms of hyperglycemia and fatigue in the first year following diagnosis type 2 diabetes than non-diabetic subjects. More symptom distress is associated with increased negative mood in both screening-detected diabetic patients and non-diabetic subjects.

The objective of this qualitative study was to develop the items and support the content validity of the PedsQL™ Sickle Cell Disease Module for pediatric patients with sickle cell disease (SCD). The iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews. Ten healthcare experts with clinical experience in SCD participated in the development of the conceptual framework. A total of 13 pediatric patients with SCD ages 5–18 and 18 parents of patients ages 2–18 participated in the individual in-depth interviews. A total of 33 pediatric patients with SCD ages 5–18 and 39 parents of patients ages 2–18 participated in individually conducted cognitive interviews that included both think aloud and cognitive debriefing techniques to assess the interpretability and readability of the item stems. Six domains were derived from the qualitative methods involving patient/parent interviews and expert opinion, with content saturation achieved, resulting in 48 items. The six domains consisted of items measuring Pain Intensity/Location (9 items), Pain Interference (11 items), Worry (7 items), Emotions (3 items), Disease Symptoms/Treatment, (12 items), and Communication (6 items). Qualitative methods involving pediatric patients and parents in the item development process support the content validity for the PedsQL™ SCD Module. The PedsQL™ SCD Module is now undergoing national multisite field testing for the psychometric validation phase of instrument development.

To determine the impact of genetic muscle disorders and identify the sociodemographic, illness, and symptom factors influencing quality of life. Adults (aged 16–90 years) with a confirmed clinical or molecular diagnosis of a genetic muscle disorder identified as part of a nationwide prevalence study were invited to complete an assessment of the impact of their condition. Quality of life was measured using the World Health Organization Quality of Life questionnaire. Impact was measured via the prevalence of symptoms and comparisons of quality of life against New Zealand norms. Multivariate regression models were used to identify the most significant predictors of quality of life domains. 490/596 participants completed the assessment (82.2% consent rate). Quality of life was lower than the general population on physical (t = 9.37 p < 0.0001, d = 0.54) social (t = 2.27 p = 0.02, d = 0.13) and environmental domains (t = 2.28 p = 0.02, d = 0.13), although effect sizes were small. No difference was found on the psychological domain (t = − 1.17 p = 0.24, d = 0.07). Multivariate regression models (predicting 42%–64% of the variance) revealed personal factors (younger age, being in employment and in a relationship), symptoms (lower pain, fatigue, and sleep difficulties), physical health (no need for ventilation support, fewer activity limitations and no comorbidities), and psychosocial factors (lower depression, anxiety, behavioural dyscontrol and higher self-efficacy, satisfaction with health care and social support) contributed to improved quality of life. A range of factors influence the quality of life in adults diagnosed with a genetic muscle disorder and some may serve as targets for multi-faceted intervention.

There is growing interest in the use of item response theory (IRT) for creation of measures of health-related quality of life (HRQOL). A first step in IRT modeling is development of item banks. Our aim is to describe the value of including librarians and to describe processes used by librarians, in the creation of such banks. Working collaboratively with PROMIS researchers at the University of Pittsburgh, a team of librarians designed and implemented comprehensive literature searches in a selected set of information resources, for the purpose of identifying existing measures of patient-reported emotional distress. A step-by-step search protocol developed by librarians produced a set of 525 keywords and controlled vocabulary terms for use in search statements in 3 bibliographic databases. These searches produced 6,169 literature citations, allowing investigators to add 444 measurement scales to their item banks. Inclusion of librarians on the Pittsburgh PROMIS research team allowed investigators to create large initial item banks, increasing the likelihood that the banks would attain high measurement precision during subsequent psychometric analyses. In addition, a comprehensive literature search protocol was developed that can now serve as a guide for other investigators in the creation of IRT item banks.

To evaluate the effect of multidisciplinary treatment on obesity and health-related quality of life (HRQOL). Obese children were randomized to a multidisciplinary lifestyle treatment, including medical, nutritional, physical, and psychological counseling during 3 months, (n = 40, BMI-SDS; 4.2 ± 0.7, age; 13.3 ± 2.0) or standard care, including an initial advice on nutrition and physical activity by the pediatrician (n = 39, BMI-SDS; 4.3 ± 0.7, age; 13.1 ± 1.9). At baseline, after 3 months of treatment and at 12 months follow-up, data were collected for BMI-SDS and a European validated questionnaire for assessing HRQOL (DISABKIDS). A significantly reduced BMI-SDS was found for the intervention group after 3 months treatment (4.0 ± 0.9 vs. 4.2 ± 0.7, P = 0.02) and at 12 months follow-up (3.8 ± 1.1 vs. 4.2 ± 0.7, P = 0.03). HRQOL in the intervention group was significantly improved at 12 months follow-up and unchanged in the obese control group. Agreement between child and parent report was moderate (67–85%), with parents reporting a lower HRQOL for their obese children than children themselves in both groups. Multidisciplinary treatment is effective in reducing BMI-SDS and improving HRQOL after 12 months follow-up.

Mental well-being has aroused interest in Europe as an indicator of population health. The Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) was developed in the United Kingdom showing good face validity and has been previously adapted into Spanish. The aim of this study is to assess the validity and reliability of the Spanish version of WEMWBS in the general population. Cross-sectional home face-to-face interview survey with computer-assisted personal interviewing was administered with the 2011 Catalan Health Interview Survey Wave 3, which is representative of the non-institutionalized general population of Catalonia, Spain. A total of 1,900 participants 15+ years of age were interviewed. The Spanish version of WEMWBS was administered together with socioeconomic and health-related variables, with a hypothesized level of association. Similar to the original, confirmatory factor analysis fits a one-factor model adequately (CFI = 0.974; TLI = 0.970; RMSEA = 0.059; χ 2 = 584.82; df = 77; p < .001) and has a high internal consistency (Cronbach’s alpha = 0.930; Guttman’s lambda 2 = 0.932). The WEMWBS discriminated between population groups in all health-related and socioeconomic variables, except in gender (p = 0.119), with a magnitude similar to that hypothesized. Overall, mental well-being was higher for the general population of Catalonia (average and whole distribution) than that for Scotland general population. The Spanish version of WEMWBS showed good psychometric properties similar to the UK original scale. Whether better mental well-being in Catalonia is due to methodological or substantive cultural, social, or environmental factors should be further researched.

Patient-reported outcomes are recognized as strong predictors of cancer prognosis. This study examines racial and ethnic differences in self-reported general health status (GHS) and mental health status (MHS) among patients with colorectal cancer (CRC). A retrospective analysis of Medicare beneficiaries between 1998 and 2011 with non-distant CRC who underwent curative resection and completed a Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey within 6–36 months of CRC diagnosis. Analysis included a stepwise logistic regression to examine the relationship between race and ethnicity and fair or poor health status, and a proportional hazards model to determine the mortality risk associated with fair or poor health status. Of 1867 patients, Non-Hispanic Black (OR 1.56, 95% CI 1.06–2.28) and Hispanic (OR 1.48, 95% CI 1.04–2.11) patients had higher unadjusted odds for fair or poor GHS compared to Non-Hispanic White patients, also Hispanic patients had higher unadjusted odds for fair or poor MHS (OR 1.92, 95% CI 1.23–3.01). These relationships persisted after adjusting for clinical factors but were attenuated after subsequently adjusting for sociodemographic factors. Compared to those reporting good to excellent health status, patients reporting fair or poor GHS or MHS had an increased mortality risk (OR 1.52, 95% CI 1.31–1.76 and OR 1.63, 95% CI 1.34–1.99, respectively). Racial and ethnic differences in GHS and MHS reported after CRC diagnosis are mainly driven by sociodemographic factors and reflect a higher risk of mortality. Identifying unmet biopsychosocial needs is necessary to promote equitable care.