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Aim: To measure the impact of type 1 and 2 diabetes mellitus (T1D and T2D) on the QoL of a person's family members/partner and assess if there is any difference in family impact. Methods: A cross‐sectional study, recruited online through patient support groups, involved UK family members/partners of people with diabetes completing the Family Reported Outcome Measure‐16 (FROM‐16). Results: Two hundred and sixty‐one family members/partners (mean age = 57.9 years, SD = 13.8; females = 68.2%) of people with diabetes (mean age = 57.7, SD = 20.6; females = 38.3%; T1D n = 100; T2D n = 161) completed the FROM‐16. The overall FROM‐16 mean score was 10.47, SD = 7.8, suggesting a moderate effect on the QoL of family members of people with diabetes. A quarter (24.5%) of family members experienced a 'very large effect' or 'extremely large effect' on their QoL. The family impact of T1D (mean FROM‐16 = 12.61, SD = 7.9) was greater than that of T2D (mean = 9.15, SD = 7.5, p < 0.01), with being 'female' and 'parents of children and adolescents' rendered as significant predictors of greater impact. Family members of T2D had a lower risk of experiencing a high family impact (FROM‐16 score >16) compared with T1D (RR 0.561, 95% CI 0.371–0.849). Conclusions: Compared to T2D, family members of T1D experience a greater impact on their QoL, particularly those caring for children and adolescents. These findings have clinical and resource implications, indicating a need to assess this impact as a part of routine diabetes care to support impacted family members. The FROM‐16 could assess this impact in routine practice and further facilitate referral of family members to appropriate support services. [ABSTRACT FROM AUTHOR]

Background Primary endpoint measures in clinical trials are typically measures of disease severity, with patient-reported outcome measures (PROMs) relegated as secondary endpoints. However, validation of some PROMs may be more rigorous than that of disease severity measures, which could provide support for a primary role for PROMs. Objectives This study reports on 24 peer reviewed journal articles that used the Dermatology Life Quality Index (DLQI) as primary outcome, derived from a systematic review of randomized controlled trials (RCTs) utlizing DLQI, covering all diseases and interventions. Methods The study protocol was prospectively published on the PROSPERO database, and the study followed PRISMA guidelines. Searches were made using MEDLINE, The Cochrane Library, Embase, Web of Science, Scopus, CINAHL (EBSCO) and PsycINFO databases and records were combined into an Endnote database. Records were filtered for duplicates and selected based on study inclusion/exclusion criteria. Full-text articles were sourced and data were extracted by two reviewers into a bespoke REDCap database, with a third reviewer adjudicating disagreements. The Jadad scoring method was used to determine risk of bias. Results Of the 3220 publications retrieved from online searching, 457 articles met the eligibility criteria and included 198 587 patients. DLQI scores were used as primary outcomes in 24 (5.3%) of these studies comprising 15 different diseases and 3436 patients. Most study interventions (17 of 24 studies, 68%) were systemic drugs, with biologics (liraglutide, alefacept, secukinumab, ustekinumab, adalimumab) accounting for 5 of 25 pharmacological interventions (20%). Topical treatments comprised 32% (8 studies), whereas nonpharmacological interventions (n = 8) were 24% of the total interventions (N = 33). Three studies used nontraditional medicines. Eight studies were multicentred (33.3%), with trials conducted in at least 14 different countries, and four studies (16.7%) were conducted in multiple countries. The Jadad risk of bias scale showed that bias was uncertain or low, as 87.5% of studies had Jadad scores of ≥ 3. Conclusions This study provides evidence for use of the DLQI as a primary outcome in clinical trials. Researchers and clinicians can use this data to inform decisions about further use of the DLQI as a primary outcome. [ABSTRACT FROM AUTHOR]

Background and Objectives: We previously reported on the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the QoL of persons with ME/CFS and their family members. Here, we present the findings of the impact on the QoL of individuals with ME/CFS whose family members did not participate in the survey. Materials and Methods: A prospective multinational online survey was disseminated via patient charities, support groups and social media. Persons with ME/CFS completed the EuroQoL questionnaire (EQ-5D-3L). Results: Data were analysed from 876 participants from 26 countries who reported a health care professional diagnosis of ME/CFS. In total, 742 participants identified as female, 124 male and 10 preferred not to say. The mean age of the participants was 47 years (range 18–82), and the mean time to diagnosis was 14 years. The mean overall health status on a visual analogue scale for people with ME/CFS was 36.4 (100 = best health). People with ME/CFS were most often affected by inability to perform usual activities (n = 852, 97%), followed by pain (n = 809, 92%), impaired mobility (n = 724, 83%), difficulty in self-care (n = 561, 64%) and least often affected by anxiety and depression (n = 540, 62%). Conclusions: The QoL of people with ME/CFS is significantly affected globally. There was no significant difference in quality of life compared with previously published data on those with ME/CFS who did have a family member complete the family member quality of life questionnaire (FROM16). Contrary to popular misconception, anxiety and depression are the least often affected areas in persons with ME/CFS who are most impacted by their inability to perform usual activities. [ABSTRACT FROM AUTHOR]

Background Over 29 years of clinical application, the Dermatology Life Quality Index (DLQI) has remained the most used patient-reported outcome (PRO) in dermatology due to its robustness, simplicity and ease of use. Objectives To generate further evidence of the DLQI's utility in randomized controlled trials (RCTs) and to cover all diseases and interventions. Methods The methodology followed PRISMA guidelines and included seven bibliographical databases, searching articles published from 1 January 1994 until 16 November 2021. Articles were reviewed independently by two assessors, and an adjudicator resolved any opinion differences. Results Of 3220 screened publications, 454 articles meeting the eligibility criteria for inclusion, describing research on 198 190 patients, were analysed. DLQI scores were primary endpoints in 24 (5.3%) of studies. Most studies were of psoriasis (54.1%), although 69 different diseases were studied. Most study drugs were systemic (85.1%), with biologics comprising 55.9% of all pharmacological interventions. Topical treatments comprised 17.0% of total pharmacological interventions. Nonpharmacological interventions, mainly laser therapy and ultraviolet radiation treatment, comprised 12.2% of the total number of interventions. The majority of studies (63.7%) were multicentric, with trials conducted in at least 42 different countries; 40.2% were conducted in multiple countries. The minimal clinically importance difference (MCID) was reported in the analysis of 15.0% of studies, but only 1.3% considered full score meaning banding of the DLQI. Forty-seven (10.4%) of the studies investigated statistical correlation of the DLQI with clinical severity assessment or other PRO/quality of life tools; and 61–86% of studies had within-group scores differences greater than the MCID in 'active treatment arms'. The Jadad risk-of-bias scale showed that bias was generally low, as 91.8% of the studies had Jadad scores of ≥ 3; only 0.4% of studies showed a high risk of bias from randomization. Thirteen per cent had a high risk of bias from blinding and 10.1% had a high risk of bias from unknown outcomes of all participants in the studies. In 18.5% of the studies the authors declared that they followed an intention-to-treat protocol; imputation for missing DLQI data was used in 34.4% of studies. Conclusions This systematic review provides a wealth of evidence of the use of the DLQI in clinical trials to inform researchers' and -clinicians' decisions for its further use. Recommendations are also made for improving the reporting of data from future RCTs using the DLQI. [ABSTRACT FROM AUTHOR]

This study systematically analysed peer-reviewed publications describing validation aspects of the Dermatology Life Quality Index (DLQI) and used Naicker's Critically Appraising for Antiracism Tool to assess risk of racial bias. Seven online databases were searched from 1994 until 2022 for articles containing DLQI validation data. Methodology followed PRISMA guidelines, the protocol was registered in PROSPERO, and articles reviewed independently by two assessors. Of 1,717 screened publications, 207 articles including 58,828 patients from > 49 different countries and 41 diseases met the inclusion criteria. The DLQI demonstrated strong test--retest reliability; 43 studies confirmed good internal consistency. Twelve studies were performed using anchors to assess change responsiveness with effect sizes from small to large, giving confidence that the DLQI responds appropriately to change. Forty-two studies tested known-groups validity, providing confidence in construct and use of the DLQI over many parameters, including disease severity, anxiety, depression, stigma, scarring, well-being, sexual function, disease location and duration. DLQI correlation was demonstrated with 119 Patient Reported Outcomes/Quality of Life measures in 207 studies. Only 15% of studies explicitly recruited minority ethnic participants; 3.9% stratified results by race/ethnicity. This review summarizes knowledge concerning DLQI validation, confirms many strengths of the DLQI and identifies areas for further validation. [ABSTRACT FROM AUTHOR]

Introduction: Skin diseases affect patients at any age, but as each period in life is different, tools used to assess quality of life impairment should be adjusted according to the particular age group. Adolescence is a unique time, when young individuals go through many changes, making them especially vulnerable to stress. Aim: Translation and validation of a Polish language version of the Teenagers Quality of Life questionnaire (T-QoL) questionnaire. Material and methods: T-QoL was translated following international guidelines. A group of 34 dermatological patients, aged 12-19 years old, with various skin diseases were given the T-QoL as well as the CDLQI or DLQI to complete. They were also asked to complete the T-QoL questionnaire for the second time after 3-5 days. Statistical analysis of the results was performed. Results: The Polish version of T-QoL is internally consistent (Cronbach a 0.893 for the whole questionnaire). Moreover, it presents very good convergent validity (ICC = 0.864). No statistically significant differences between each question were noticed between the first and second time of completing the form. T-QoL scores correlated significantly with DLQI (p = 0.008, r = 0.636) and CDLQI (p < 0.001, r = 0.777) scores. Conclusions: The Polish version of the T-QoL questionnaire is a reliable instrument with adequate convergent validity, consistency and reproducibility. It can be successfully used to measure quality of life impairment among teenagers. [ABSTRACT FROM AUTHOR]

The article discusses a case of an 88-year-old man with dementia who has been diagnosed with basal cell carcinoma on his ear. The patient's son, who has lasting power of attorney, wants his father to undergo Mohs surgery for treatment. The article highlights the importance of assessing the patient's capacity to make decisions, considering the best interests of the patient, and involving an Independent Mental Capacity Advocate if needed. It also emphasizes the need for clear communication, exploring alternative treatment options, and ensuring that the patient's wishes are respected. [Extracted from the article]

The measurement of the impact of skin diseases on patients' quality of life is important. This review explains the reasons for this, explains the main methods of measuring quality of [...]

Summary: Background: Body dysmorphic disorder (BDD) is a common psychiatric disorder associated with high costs for healthcare systems as patients may repeatedly ask for different, often not effective, interventions. BDD symptoms are more prevalent in patients with dermatological conditions than in the general population, but there are no large sample studies comparing the prevalence of BDD symptoms between patients with dermatological conditions and healthy skin controls. Objectives: To compare the prevalence of BDD symptoms between patients with different dermatological conditions and healthy skin controls and to describe sociodemographic, physical and psychological factors associated with BDD symptoms to identify patients who may have a particularly high chance of having this condition. Methods: This observational, cross‐sectional, comparative multicentre study included 8295 participants: 5487 consecutive patients with different skin diseases (56% female) recruited among dermatological outpatients at 22 clinics in 17 European countries, and 2808 healthy skin controls (66% female). BDD symptoms were assessed by the Dysmorphic Concern Questionnaire. Sociodemographic data and information on psychological factors and physical conditions were collected. Each patient was given a dermatological diagnosis according to ICD‐10 by a dermatologist. The study was registered with number DRKS00012745. Results: The average participation rate of invited dermatological patients was 82.4% across all centres. BDD symptoms were five times more prevalent in patients with dermatological conditions than in healthy skin controls (10.5% vs. 2.1%). Patients with hyperhidrosis, alopecia and vitiligo had a more than 11‐fold increased chance (adjusted Odds Ratio (OR) > 11) of having BDD symptoms compared with healthy skin controls, and patients with atopic dermatitis, psoriasis, acne, hidradenitis suppurativa, prurigo and bullous diseases had a more than sixfold increased chance (adjusted OR > 6) of having BDD symptoms. Using a logistic regression model, BDD symptoms were significantly related to lower age, female sex, higher psychological stress and feelings of stigmatization. Conclusions: Clinical BDD symptoms are significantly associated with common dermatological diseases. As such symptoms are associated with higher levels of psychological distress and multiple unhelpful consultations, general practitioners and dermatologists should consider BDD and refer patients when identified to an appropriate service for BDD screening and management. What is already known about this topic?Body dysmorphic disorder (BDD) is a common psychiatric disorder with a prevalence of about 2% in the general population.Skin diseases pose a high psychological burden on patients. People with these problems often experience increased self‐consciousness, skin‐related shame and stigmatization.Single‐centre studies including small samples of patients with skin conditions showed that these patients show symptoms of a similar nature to BDD more often than the general population. What does this study add?In this large multicentre study, BDD symptoms were fivefold more prevalent in dermatological patients than in healthy skin controls, and were related to young age, female sex, psychological stress and stigmatization experience.Certain patient groups (e.g. hyperhidrosis) had a greater than 11‐fold increased chance of BDD symptoms compared with controls.Doctors should consider appearance‐related concern and BDD more often and refer patients when needed to an appropriate service for assessment and treatment. Body dysmorphic disorder (BDD) is a psychiatric condition affecting about 2.5 % of the general population. Patients with this condition are preoccupied with negative thoughts about their own appearance which highly impair their daily functioning. Skin diseases can pose a high psychological burden on patients partly due to visible skin lesions. BDD has been shown to affect dermatological patients quite often, but there are no large studies that include both patients with different dermatological conditions and healthy skin controls. This study included 8295 participants: 5487 patients with different skin diseases (56% female) recruited among dermatological out‐patients at 22 clinics in 17 European countries and 2808 people with healthy skin (66% female). Symptoms of BDD were measured using a self‐report questionnaire. In addition, each patient was given a dermatological diagnosis by a dermatologist. It was shown that BDD symptoms were five times more prevalent in patients with dermatological conditions than in people with healthy skin (10.5% vs. 2.1%). Certain dermatological patients (e.g. with excessive sweating, circular hairloss and white spot disease) had a more than eleven‐fold increased chance of BDD symptoms compared to people with healthy skin. It was also shown that BDD symptoms more often occurred in younger and in female persons, and those experiencing higher psychological stress and feeling stigmatized. As BDD symptoms are so common in dermatological patients, general practitioners and dermatologists should consider both BDD and appearance related distress and refer patients when identified to an appropriate service for further assessment and management. Linked Comment: P. Magin and K. Fisher. Br J Dermatol 2022; 187:5. Plain language summary available online [ABSTRACT FROM AUTHOR]