When examining equivalence between paper and electronic versions of PROs, formats are usually judged by authors to be equivalent. Participants prefer electronic formats. This literature review gives encouragement to the further widespread development and use of ePROs.

Planners of interventional studies in psoriasis face the dilemma of selecting suitable quality-of-life (QoL) measures. Systematic reviews have the potential of identifying psychometrically sound measures in a given therapeutic area, while guiding the development of practice guidelines. The aim of this systematic review was to generate evidence of the use of QoL instruments in randomized controlled trials (RCTs) for interventions in psoriasis. The methodology followed the PRISMA guidelines. Six databases were searched with 388 search terms. Abstracts of articles were reviewed independently by two assessors, and a third adjudicator resolved any opinion differences. Risk of bias was assessed using the Jadad scale. Of 3646 screened publications, 99 articles (100 trials) met the eligibility criteria for inclusion, describing research on 33 215 patients. Thirty-three trials tested topical therapy, 18 systemic, 39 biologics, nine phototherapy and 10 other interventions. The Dermatology Life Quality Index (DLQI) was the most commonly used QoL instrument (83 studies, 83%), followed by the 36-Item Short Form Survey (SF-36) (31, 31%), EuroQoL-5D (EQ-5D) (15, 15%), Psoriasis Disability Index (14, 14%) and Skindex (five, 5%). There was widespread inconsistency in the way that QoL data were reported. Of the 100 trials identified, 37 reported minimal clinically important difference (MCID): 32 for DLQI, 10 for SF-36 and six for EQ-5D. QoL measurement is increasingly being reported in RCTs of psoriasis. Formal guidelines are needed for assessment and publishing of QoL data. Researchers should consider whether MCID information is available, and development of MCID data should be encouraged.

ObjectiveThis study aimed to measure the impact of COVID-19 on the quality of life (QoL) of survivors and their partners and family members.Design and settingA prospective cross-sectional global online survey using social media.ParticipantsPatients with COVID-19 and partners or family members (age ≥18 years).InterventionOnline survey from June to August 2020.Main outcome measureThe EuroQol group five dimensions three level (EQ-5D-3L) to measure the QoL of survivors of COVID-19, and the Family Reported Outcome Measure (FROM-16) to assess the impact on their partner/family member’s QoL.ResultsThe survey was completed by 735 COVID-19 survivors (mean age=48 years; females=563) at a mean of 12.8 weeks after diagnosis and by 571 partners and 164 family members (n=735; mean age=47 years; females=246) from Europe (50.6%), North America (38.5%) and rest of the world (10.9%). The EQ-5D mean score for COVID-19 survivors was 8.65 (SD=1.9, median=9; range=6–14). 81.1% (596/735) reported pain and discomfort, 79.5% (584/735) problems with usual activities, 68.7% (505/735) anxiety and depression and 56.2% (413/735) problems with mobility. Hospitalised survivors (20.1%, n=148) and survivors with existing health conditions (30.9%, n=227) reported significantly more problems with mobility and usual activities (p<0.05), with hospitalised also experiencing more impact on self-care (p≤0.001). Among 735 partners and family members, the mean FROM-16 score (maximum score=highest impact =32) was 15 (median=15, range=0-32). 93.6% (688/735) reported being worried, 81.7% (601/735) frustrated, 78.4% (676/735) sad, 83.3% (612/735) reported impact on their family activities, 68.9% (507/735) on sleep and 68.1% (500/735) on their sex life.ConclusionCOVID-19 survivors reported a major persisting impact on their physical and psychosocial health. The lives of their partners and other family members were also severely affected. There is a need for a holistic support system sensitive to the needs of COVID-19 survivors and their family members who experience a major ‘secondary burden’.

This study identifies a specific psychological burden experienced by hand eczema patients, highlighting the need for focused psychosocial interventions. Physicians in particular should be aware of the need to identify anxiety and depression in female patients.

This is an open access article under the CC BY-NC license. www.medicaljournals.se/acta Acta Derm Venereol 2020; 100: adv00161 Centenary theme section: ATOPIC DERMATITIS SIGNIFICANCE Atopic dermatitis is the most common inflammatory skin condition globally that affects both children and adults. The symptoms of atopic dermatitis as well as the demands of treatment often contribute to a significant impact on patient quality of life (QoL). This QoL impairment may also extend to caregivers, partners and close family members of atopic dermatitis sufferers. This review aims to evaluate the impact of atopic dermatitis on the QoL of patients and close relatives. A myriad of tools are available for measuring QoL; a brief description of the most relevant instruments is also presented in this article. Atopic dermatitis is the most prevalent chronic inflammatory skin condition globally. The burden of atopic dermatitis on children and adults is extensive and there is also significant impact on the lives of patient caregivers and family members. It is important to be able to measure this impact to inform clinical decisions and to plan appropriate patient and carer support. The current impact of atopic dermatitis on children and adults can be measured using several different quality of life questionnaires: the most frequently used are the Dermatology Quality of Life (DLQI), Children's Dermatology Quality of Life and Infants Dermatology Quality of Life. The impact on partners and family can be measured using several atopic dermatitis specific questionnaires or the Family DLQI or the generic Family Reported Outcome Measure, FROM-16.

PurposeThe Dermatology Life Quality Index (DLQI) and the European Quality of Life-5 Dimension (EQ-5D) are separate measures that may be used to gather health-related quality of life (HRQoL) information from patients. The EQ-5D is a generic measure from which health utility estimates can be derived, whereas the DLQI is a specialty-specific measure to assess HRQoL. To reduce the burden of multiple measures being administered and to enable a more disease-specific calculation of health utility estimates, we explored an established mathematical technique known as ordinal logistic regression (OLR) to develop an appropriate model to map DLQI data to EQ-5D-based health utility estimates.MethodsRetrospective data from 4010 patients were randomly divided five times into two groups for the derivation and testing of the mapping model. Split-half cross-validation was utilized resulting in a total of ten ordinal logistic regression models for each of the five EQ-5D dimensions against age, sex, and all ten items of the DLQI. Using Monte Carlo simulation, predicted health utility estimates were derived and compared against those observed. This method was repeated for both OLR and a previously tested mapping methodology based on linear regression.ResultsThe model was shown to be highly predictive and its repeated fitting demonstrated a stable model using OLR as well as linear regression. The mean differences between OLR-predicted health utility estimates and observed health utility estimates ranged from 0.0024 to 0.0239 across the ten modeling exercises, with an average overall difference of 0.0120 (a 1.6% underestimate, not of clinical importance).ConclusionsThis modeling framework developed in this study will enable researchers to calculate EQ-5D health utility estimates from a specialty-specific study population, reducing patient and economic burden.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-017-1607-4) contains supplementary material, which is available to authorized users.

What's already known about this topic? The use of patient reported outcome measures (PROs) in electronic format has been increasing.  Electronic formats are usually not validated or compared to their original paper-based formats, but are assumed without evidence to be comparable.  The benefits of using electronic PROs include portability, real-time monitoring of patients' quality of life and improved data capture. What does this study add? There is equivalence between completing the DLQI on paper and in an electronic format.  Patients prefer the electronic format to the paper version: the electronic format takes slightly longer to complete.  This equivalence testing of the electronic format of the DLQI with the paper version will reassure and encourage such use in clinical and research settings. ABSTRACT BackgroundThe use of patient-reported outcome measures in electronic format has been increasing. However, these formats are usually not validated or compared to the original paper-based formats, so there is no evidence that they are completed in the same way.

Background Skin conditions may have a major impact on the psychological well-being of patients, ranging from depression to anxiety. The Dermatology Life Quality Index (DLQI) is the most commonly used quality of life tool in dermatology, though it has yet to be correlated with psychiatric measures used in clinical therapeutic trials. Objectives We conducted a systematic review to determine whether there is any correlation between the DLQI and psychiatric measure scores, potentially allowing the DLQI to be used as a surrogate measure for depression or psychiatric screening. Methods Six databases were searched using the keywords: 'DLQI', 'Dermatology Life Quality Index', 'Psych*', 'depression', 'anxiety', 'stress' and 'trial*'. All randomised trials where full DLQI and psychiatric scores were provided were included. PRISMA guidelines were followed. Results 462 records were screened but only seven met inclusion criteria. Hospital Anxiety and Depression Scale (HADS) was the most commonly used psychiatric measure; the 'depression' component score changes correlated strongly with the DLQI (r=0.715). Conclusions There needs to be guidance on psychiatric measurement and reporting in clinical trials. Though the DLQI correlated well with the 'depression' domain of the HADS scale, interviews and screening for depression are still vital for full assessment of patient psychological well-being as well as for fully understanding the wider impact of skin disease on patients