Ehlers-Danlos Syndrome hypermobility type (EDS-HT) and joint hypermobility syndrome (JHS) are two overlapping heritable connective tissue disorders. Patients with these conditions have many and various complaints; limitations in performing daily activities, reduced muscle strength and proprioception, kinesiophobia, and pain. There is a lack of evidence-based treatment approaches; a few studies have shown effect of physiotherapy. Many authors propose multidisciplinary treatment, but this has neither been described nor evaluated for this patient group. The aim of this pilot study was to investigate if a multidisciplinary rehabilitation program combining physical and cognitive-behavioral therapy was feasible, safe and effective for 12 women with EDS-HT/JHS. Intervention was offered as a group program and consisted of three parts: (1) Two and a half week in a rehabilitation unit with testing, physical training, group discussions and lectures. (2) Individual home exercises for three months with weekly guidance by local physiotherapist. (3) Readmission four days for retesting and further training advice. All participants completed the intervention. We found significant changes in perceived performance of daily activities, significant increase of muscle strength and endurance and a significant reduction of kinesiophobia. There were smaller changes in self-perceived pain. The participants also reported increased participation in daily life.

Summary Background Atopic dermatitis (AD) is associated with high disease burden, with a significant physical and social impact. However, the association between disease severity and burden of disease, with work productivity and daily activities being one aspect, has not been well characterized. Objectives To investigate the impact of disease severity on work productivity and daily activities among adults with AD in Europe (France, Germany and the U.K.) and the U.S.A. Methods The survey panel participants for this cross‐sectional internet‐based survey on AD were sourced from the population‐based National Health and Wellness Survey (Europe 2016, U.S.A. 2015 and 2016). AD severity was determined by Patient‐Oriented Scoring Atopic Dermatitis (PO‐SCORAD). Work productivity and work activity impairment were assessed using the Work Productivity and Activity Impairment (WPAI) – Specific Health Problem questionnaire for AD. Results The study survey was completed by 1098 respondents with moderate‐to‐severe AD and 134 with mild AD. Overall, the negative impact on work productivity (all WPAI items) was suggested to increase with increasing AD severity (PO‐SCORAD) at the regional level (Europe and U.S.A.) and in the total sample. For overall work impairment due to AD, respondents with mild AD reported a mean of 2·4 h per week of potential work productivity lost, respondents with moderate AD 9·6 h and respondents with severe AD 19·0 h. Conclusions Higher AD severity was associated with a greater negative impact on work productivity in adults. This impact is a burden not only for the patient but also for society and may provide incentives for treatment optimization and more effective management of AD. What's already known about this topic? Atopic dermatitis (AD) is associated with a high disease burden. AD has a negative impact on several aspects of health‐related quality of life, one of which is work productivity. What does this study add? By using a population of participants with AD recruited from the National Health and Wellness Survey, which collects broad and representative data from the general population, survey data could be obtained from U.S. and European populations of patients with AD. The present study suggests an increasingly negative impact on work productivity with increasing severity of AD. The data indicate no regional differences in the impact of AD severity on work productivity.

Most adults with congenital limb deficiency (CLD) live ordinary lives and experience normal life events. However, several report chronic pain and retire before normal retirement age. In spite of free and accessible prosthetic services, a large fraction chooses not to use prosthesis, more use grip-improving devices for specific activities. These preferences should be acknowledged by rehabilitation specialists. Focus on individually adapted environments, more information about the consequences of overuse, and vocational guidance may moderate pain and prevent early retirement.

Summary Background Better understanding of the relationship between atopic dermatitis (AD) severity and health‐related quality of life (HRQoL) could help improve knowledge of a more effective treatment for people with AD. Objectives To assess the relationship between AD severity and HRQoL and perception of AD symptoms in adults with moderate‐to‐severe AD in Europe and the U.S.A. Methods Participants for this cross‐sectional, internet‐based survey were recruited from the larger population‐based National Health and Wellness Survey. AD severity was measured by Patient‐Oriented SCORing of AD. HRQoL was measured by the five‐level EuroQol‐5D, Dermatology Life Quality Index (DLQI) and Patient‐Oriented Eczema Measure (POEM). Results Altogether, 1232 respondents were included: 1098 (89·1%) with moderate‐to‐severe AD [221 (20·1%) from France, 209 (19·0%) from Germany, 118 (10·7%) from the U.K. and 550 (50·1%) from the U.S.A.]. An additional 134 (10·9%) respondents with mild AD were included. Sociodemographic and clinical AD characteristics were similar between countries. In adults with moderate‐to‐severe AD, higher AD severity correlated with poorer HRQoL (Spearman's r = –0·38 and 0·61 for EQ‐5D and DLQI, respectively; both P < 0·001). AD severity was positively correlated with POEM (Spearman's r = 0·51; P < 0·001). People with moderate‐to‐severe vs. those with mild AD had poorer health outcomes (EQ‐5D, DLQI and POEM, P < 0·001 for all). These results were similar and consistent for the European and the U.S. populations separately. Conclusions Higher AD severity is associated with poorer HRQoL across Europe and the U.S.A. This is a burden for patients and may provide encouragement for more effective management of AD. What's already known about this topic? Atopic dermatitis (AD) is associated with a detrimental effect on health‐related quality of life (HRQoL), including sleep disturbance, anxiety and depression. Limited data describing the relationship between different levels of AD severity and self‐reported HRQoL have been published. What does this study add? There is a positive association between increasing AD severity (Patient‐Oriented SCORing of AD) and decreasing HRQoL (EQ‐5D and Dermatology Life Quality Index) and the perception of AD symptoms (Patient‐Oriented Eczema Measure) from the patient's perspective. AD severity according to geographic locations was explored (France, Germany, the U.K., and the U.S.A.), showing that the decreasing HRQoL associated with increasing AD severity was quite consistent between the geographic locations. What are the clinical implications of this work? The results of this study showed that higher AD severity is associated with poorer HRQoL from the subject’s perspective in both Europe and the US. This fact confirms that there is a burden for these patients and may provide encouragement for a more effective management of AD, especially among those with greater AD severity.

PurposeTo describe Norwegian adults with congenital unilateral upper limb deficiency (CUULD) regarding self-reported chronic pain (intensity, locations, impact on daily life) and fatigue. Analyze associations between chronic pain and demographic/clinical factors and associations between fatigue and demographic/ clinical factors. Materials and methodsCross-sectional study. In 2012, a postal questionnaire was sent to 186 persons with congenital limb deficiency, age ! 20 years. Seventy seven persons with CUULD responded and are included in this paper. The questionnaire included questions on demographic and clinical factors, chronic pain (Brief Pain Inventory, Standardized Nordic Questionnaire) and fatigue (Fatigue severity scale (FSS)).

Persons with UULD reported reduced HRQoL on most SF-36 subscales, mostly in the physical health domain. Employment status, occurrence of comorbidity and chronic pain seem to have a negative impact on the HRQoL. Measures that can reduce pain and loss of function should be given particular attention in UULD rehabilitation. Implications for Rehabilitation Persons with congenital unilateral upper limb deficiency (UULD) who experience pain and discomfort should seek professional help for evaluating their everyday coping strategies. Professionals who meet persons with UULD should examine anomalies, comorbidity, pain and employment status before choosing advices and actions. Individually adapted grip-improving devices, environments, physical exercise and pain management programs should be implemented early to reduce pain, loss of function and decreased HRQoL. A multidisciplinary approach is often necessary when counseling persons with UULD.

Most children with CLD participated with their peers and managed well in everyday life. Children with MLD/LLD seemed to have more challenges than children with UULD. Approximately one-third of all the children had assistive devices and/or practical assistance in school. Implications for Rehabilitation Most children with upper-limb deficiency (UULD) in Norway manage well in everyday life and have HRQOL equal to other Norwegian children. Many choose grip-improving devices instead of prostheses. Their preferences should be respected and taken into account as the need for new assistive devices arise. For children with pronounced disabilities, access to, and use of, assistive devices, adaptions and practical assistance may be important for participation. Cooperation with the child and the parents is necessary to find useful measures. Physical education and practical subjects may provide special challenges, both for children and their teachers. Children themselves often find good solutions and the tasks should be planned ahead in cooperation with them.

ObjectivesTo describe level of education and work participation among adults with congenital unilateral upper limb deficiency (CUULD) in Norway and to explore associations between work participation and demographic and clinical factors.MethodsCross-sectional study. In 2012, a postal questionnaire was sent to 186 persons with congenital limb deficiency (CLD), age ≥ 20 years, registered at the TRS National Resource Center for Rare Disorders. In the original CLD study, 77 persons with CUULD responded. In this paper 64 persons with CUULD of working age (20–67 years) are included. Data on demographic factors as education level and work participation, and clinical factors including limb deficiency characteristics, chronic pain (Standardized Nordic Questionnaire), fatigue (Fatigue Severity Scale), physical and mental health (SF-36) were analyzed through descriptive and comparable statistics and logistic regression analyses.ResultsSixty-four persons participated, mean age 43.4 (SD 13.7; range 20–67 years), 45 were women. Education level >13 years was reported by 34. Forty- three of the 64 participants were employed, 21 were prematurely retired (disability benefits). 11 of the 43 employed, and 6 of the 21 prematurely retired had completed vocational education. Physically demanding occupations (work activities that required standing, walking and lifting) were reported by 25 of the 43 employed and 13 of the 21 prematurely retired. 17 of the 64 reported need for further adaptions in their workplaces. The strongest predictors of work participation were younger age (OR 0.86) and good physical health (OR 1.21).ConclusionTwo thirds of persons with CUULD were employed; while one third was prematurely retired and had left work earlier than expected. This suggests that persons with CUULD may experience challenges in work participation. Although levels of education were relatively high, several had chosen careers that required physical strain. Younger age and good physical health were the most important factors mediating work participation.