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Objectives: The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member)., Design: A patient-partner, multinational, subject-initiated, cross-sectional online survey., Setting: International survey using ME/CFS charities, support groups and social media., Participants: Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18-81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18-87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS., Interventions: EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members., Results: The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances., Conclusions: To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members., Competing Interests: Competing interests: AYF is joint copyright owner of FROM-16, a family member is deputy chair of the NICE ME/CFS guideline committee. JV has been on an Advisory board for Amgen and received honorarium from L’Oreal and support for conference attendance from UCB pharma . NM is Chair of the CMRC education working group for ME/CFS Research Collaborative, member of Forward ME, director of Doctors with ME, witness for NICE education, member of ME education working groups ICANCME (Canada) and the Centre for Solutions (USA), a workshop participant in the James Lind Alliance ME/CFS Priority Setting Partnership and a supporter of Action for ME. NM has received consultancy fees from Learn about ME Project and Ono Pharmaceuticals as well as honorarium from GW4 ME/CFS Carers Project. RE is a member of the Patient Advisory Group to the CMRC, a member of the ME/CFS Friendship group in Gloucestershire, a workshop participant in the James Lind Alliance ME/CFS Priority Setting Partnership, a supporter of Action for ME and is both a patient with ME/CFS and a family member of a patient with ME/CFS., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: This 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 Setting: A prospective cross-sectional global online survey using social media., Participants: Patients with COVID-19 and partners or family members (age ≥18 years)., Intervention: Online survey from June to August 2020., Main Outcome Measure: The 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., Results: The 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., Conclusion: COVID-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'., Competing Interests: Competing interests: RS and SJN declared no competing interest, AYF is joint copyright holder of FROM-16 and of other quality of life measures. AYF reports personal fees from Novartis. SMS is joint copyright holder of FROM-16 and of other quality of life measures. JRI reports personal fees from UCB Pharma, personal fees from Novartis, personal fees from Boehringer Ingelheim, personal fees from Kymera Therapeutics, personal fees from Viela Bio, personal fees from UpToDate, personal fees from Editor of British Journal of Dermatology, outside the submitted work; in addition, JRI is co-copyright holder of the Hidradenitis Suppurativa Quality of Life (HiSQOL) score. FA reports grants and personal fees from Janssen, personal fees from AbbVie, personal fees from Lilly Pharmaceuticals, personal fees from L'Oreal, personal fees from LEO Pharmaceuticals, personal fees from UCB, outside the submitted work., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members' quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient's reported quality of life scores and their family members' mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

Chronic diseases not only have a direct influence on patients' quality of life, but can also affect the life of family members. The aim of this study was to create the Polish language version of a questionnaire estimating impact of disease on quality of family life: the Family Reported Outcome Measure - 16 (FROM-16). A standard forward and backward translation procedure was used to convert the original English version of FROM-16 into the Polish language. Creation of the Polish version was performed in a group of 30 patients' family members. The Polish language version of FROM-16 showed very good internal consistency reliability, the Cronbach α coefficient was 0.89. Reproducibility level was established with an intraclass correlation coefficient of 0.98. The Polish language version of FROM-16 can potentially be used as a tool to assess quality of life of patients' family members.

Pain and discomfort are important symptoms in dermatology. The aim of this cross-sectional, multicentre study was to describe the prevalence of pain/discomfort and its associations in patients with several dermatological conditions across 13 European countries. The outcome was the prevalence of pain/discomfort according to a question of the EQ-5D questionnaire. Data collected from November 2011 to February 2013 were complete for 3,509 consecutive outpatients. Moderate or extreme pain/discomfort was reported by 55.5% of patients and 31.5% of controls with no skin conditions. The highest proportions were reported by patients with hidradenitis suppurativa (92.9%), leg ulcer (81.4%), prurigo (80%) and lichen planus (75.6%). Pain/discomfort was associated with older age, low educational level, clinical severity, flare on scalp or hands, itch, depression, anxiety, low quality of life, and thoughts of suicide. It is important to enquire specifically about pain/discomfort during clinical consultations and to address it when planning a patient's care.

Itch is a highly prevalent and multidimensional symptom. We aimed to analyze the association between itch and mental health in dermatological patients. This multicenter study is observational and cross-sectional and was conducted in dermatological clinics across 13 European countries. A total of 3,530 patients and 1,094 healthy controls were included. Patients were examined clinically. Outcome measures were itch (presence, chronicity, and intensity), the Hospital Anxiety and Depression Scale, EQ-5D visual analogue scale, sociodemographics, suicidal ideation, and stress (negative life events and economic difficulties). Ethical approval was obtained. Results showed significant association between the presence of itch in patients and clinical depression (odds ratio, 1.53; 95% confidence interval, 1.15-2.02), suicidal ideation (odds ratio, 1.27; 95% confidence interval, 1.01-1.60), and economic difficulties (odds ratio, 1.24; 95% confidence interval, 1.10-1.50). The mean score of reported generic health status assessed by the EQ-5D visual analogue scale was 65.9 (standard deviation = 20.1) in patients with itch, compared with 74.7 (standard deviation = 18.0) in patients without itch (P < 0.001) and 74.9 (standard deviation = 15.7) in controls with itch compared with 82.9 (standard deviation = 15.6) in controls without itch (P < 0.001). Itch contributes substantially to the psychological disease burden in dermatological patients, and the management of patients should include access to multidisciplinary care., (Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)

Introduction: Assessing the consequences of chronic spontaneous/idiopathic urticaria (CSU) requires the evaluation of health-related quality of life (HRQoL) associated with the severity of CSU signs and symptoms. It is important to understand how signs, symptoms, and HRQoL change over time in CSU. Evidence is lacking on how closely changes in signs and symptoms of CSU are related to changes in HRQoL. The objective of this study was to assess the correlation between changes in patient-reported outcome measures (PROMs) of signs and symptoms, dermatologic quality of life (QoL), and urticaria-specific QoL., Methods: Latent growth models (LGMs) were applied to longitudinal data from three randomized, Phase 3 clinical trials investigating the efficacy and safety of omalizumab in CSU., Results: A near-perfect association between changes in signs and symptoms and changes in dermatologic and urticaria-specific QoLs was identified in each clinical trial when using LGMs (correlation coefficient range 0.88-0.92)., Conclusion: Evidence showed that changes in signs and symptoms are closely related to changes in HRQoL. However, analyses were performed on clinical trial results of an extremely effective treatment; a less effective treatment with much smaller changes over time may not show such close correlations. Results suggest that any of these PROMs may be used to understand changes in CSU.

Chronic diseases can severely impair patients' quality of life but little information is available about the long-term impact of chronic diseases. The chronic nature of disease may decrease patients' psychosocial well-being, may change their attitude towards life goals and influence major life-changing decisions (MLCDs). Understanding of the impact on MLCDs is largely missing from health outcomes research. It is potentially important in the assessment of the overall burden and cumulative impact of chronic disease. This chapter reviews the concepts of life events, life transition, life goals concepts and what constitutes a long-term impact, essential background to this area. We also describe the relationship of the concept of MLCD with the concept of cumulative life course impairment. Chronic disease has long-term impact on patients' lives, particularly by influencing MLCDs related to career, job, relationships, education, having children and early retirement. We describe qualitative research carried out in Cardiff that has sought to give more detailed insight into what decisions constitute MLCDs, in patients both from dermatology and from several general medical disciplines. We have also proposed the MLCD Profile to measure the number of MLCDs that an individual patient may have experienced as being influenced by chronic disease. Adding the domain of MLCDs to how we think about the burden of disease experienced by an individual, could broaden understanding of the true extent of disease impact., (Copyright © 2013 S. Karger AG, Basel.)

Background: Financial and managerial constraints have resulted in the rationalization of dermatology inpatient services in the United Kingdom and the United States. Therapeutic regimes may vary locally, regionally, and internationally but the clinical outcome of treatment remains the same., Objective: We studied 2 inpatient units: the University of Wales College of Medicine, Cardiff, United Kingdom, and the University of Miami School of Medicine, Miami, Florida, to compare the use and effectiveness of the service provided., Methods: Data were collected prospectively from inpatients during a 12-month period. The Dermatology Life Quality Index was administered on admission and after discharge. Data were recorded about the diagnosis, duration of admission, and referring dermatologist., Results: In all, 295 patients (Cardiff, UK) and 366 patients (Miami, Fla) participated. The average duration of admission in Miami was 6.7 days compared with 14.2 (P <.0001) in Cardiff. In Miami, the most common reasons necessitating admission were extensive disease (54%), the patient being unwell (18%), photophoresis (14%), outpatient treatment failure (8%), and acute deterioration of disease (4%). In Cardiff, the common reasons were acute deterioration (35%), extensive disease (28%), outpatient treatment failure (22%), and liver biopsy (4%). The most common diagnoses in Cardiff were psoriasis (31%) and eczema (26%). In contrast, the most common diagnoses in Miami, were psoriasis (19%), leg ulcers (17%), and mycosis fungoides (14%). The mean Dermatology Life Quality Index value for all patients decreased after admission in Cardiff (14.9-8.2, P <.0001) and Miami (12.0-8.5, P <.0001)., Conclusion: Despite the differences in the 2 health care systems, inpatient therapy remains an important and effective therapeutic option in the United States and the United Kingdom.

Objective: To assess the impact of atopic dermatitis (AD) on total burden of illness and quality of life in a managed care population., Methods: This study included retrospective evaluation of electronic claims, patient surveys of financial burden and quality of life (QOL), and medical chart review. A total of 962 AD patients had 12 months of claims data available. Of these, the Dermatology Life Quality Index (DLQI), SF-36, and Children's Dermatology Life Quality Index (CDLQI) were mailed to 400 participants (42%) who consented to take part in the prospective evaluation, 298 of whom returned evaluable questionnaires (75% response rate to survey and 31% of eligible patients). Survey responders comprised the cohort used for determination of economic and humanistic burden of illness. Additionally, socioeconomic demographics, out-of-pocket expenses, and clinical history (including disease severity) were collected via survey. Provider assessments of disease severity were collected via chart review., Results: The patient mean age was 17.22+/-0.94 years, which was not unexpected considering AD is the eighth most common disease in people younger than 25 years. Mean 167 dollars per person, or only 27.4% of the total burden. A vast majority of the direct medical expenditures occurred in the outpatient setting and were composed primarily of clinic visits and medications. Approximately 50% of the total burden of illness associated with AD resulted from days lost from work. The remainder of the burden was out-of-pocket costs to the patients and their families. More than 75% of the out-of-pocket costs resulted from household items and medications. The mean DLQI score for the 107 adults was 6.6+/-5.4, and the mean CDLQI score among the 132 children aged 4 to 16 years was 5.8+/-5.9, compared with adults without skin disease (0.5+/-1.1) and children without skin disease (0.38+/-0.71) in the validation populations. Patient-assessed severity demonstrated a stronger correlation with CDLQI and DLQI than did provider-assessed severity., Conclusion: Atopic dermatitis, while not a life-threatening illness, imposes a financial burden on the health care system, but even more so on the individual. Indirect costs, such as the purchase of special household items and days lost from work, comprise a great proportion of this burden and should not be overlooked when evaluating this disease.