Measurement of health-related quality of life in dermatological research and practice: outcome of the EADV Taskforce on Quality of Life.

In the last decade, the importance of the measurement of health-related quality of life (HRQoL) has grown significantly. Today, HRQoL measurement is generally considered to be important in clinical trials, in the assessment of disease severity, in patient management and in the field of health economics. Therefore, a good understanding of the concept of HRQoL and its measurement instruments is a prerequisite for both researchers and clinicians. The European Academy for Dermatology and Venereology (EADV) Taskforce on Quality of Life encourages the application of HRQoL instruments in research and clinical practice, and with this manuscript, the Taskforce aims to contribute to the quality of this application. In dermatology, a large number of HRQoL instruments exist and herewith, we summarize the most commonly used generic and dermatology-specific HRQoL instruments. Information is given on the most important psychometric characteristics of these instruments, including: scale structure, reliability, validity and responsiveness. Furthermore, a flow chart is provided to support researchers and clinicians in selecting an existing instrument or, in case an appropriate instrument does not exist, in finding alternative solutions. The present manuscript is the first of a series of manuscripts to be written on behalf of the EADV Taskforce on Quality of Life, aiming to contribute to the scientific knowledge and measurement of patient reported outcomes in dermatological research and practice.

Patient-Oriented SCORAD (PO-SCORAD): a new self-assessment scale in atopic dermatitis validated in Europe.

BACKGROUND: Patient-oriented medicine is an emerging concept, encouraged by the World Health Organization, to greater involvement of the patient in the management of chronic diseases. The Patient-Oriented SCORing Atopic Dermatitis (PO-SCORAD) index is a self-assessment score allowing the patient to comprehensively evaluate the actual course of atopic dermatitis (AD), using subjective and objective criteria derived mainly from the SCORAD, a validated AD severity clinical assessment tool. OBJECTIVES: To validate the PO-SCORAD index in a large European population of patients exhibiting all forms of AD severity by assessing its correlation with the SCORAD index. PATIENTS/METHODS: Four hundred and seventy-one patients (185 adults, 286 children) consulting for AD in hospitals from 9 European countries were recruited. The investigators and the patients used the SCORAD and PO-SCORAD scales, respectively, to assess AD severity at inclusion (D0) and 28 ± 7 days later (D28). RESULTS: Patient-Oriented SCORing Atopic Dermatitis and SCORAD scores were significantly correlated at D0 [r = 0.67 (95% CI: 0.62; 0.72), P < 0.0001]. Consistency was confirmed at D28, with a stronger linear correlation between both scales [r = 0.79 (95% CI: 0.75; 0.83), P < 0.0001]. Absolute changes from baseline in SCORAD and PO-SCORAD scores were also significantly correlated [r= 0.71 (95% CI: 0.64; 0.76), P < 0.0001]. Although no specific intervention was investigated, AD improved over the study, with a decrease of PO-SCORAD and SCORAD scores from D0 to D28 by -19.19% and -24.39%, respectively. The consistency of the correlations was similar in the adult and children groups. CONCLUSIONS: This study validated the use of PO-SCORAD to self-assess AD severity and demonstrated its good correlation with SCORAD.

Assessment of atopic eczema: clinical scoring and noninvasive measurements.

BACKGROUND: Clinical scoring systems are widely used in clinical trials of atopic eczema (AE), while noninvasive methods are more often used for research purposes. Positive correlations between the two types of methods may be used in support of the validity of both in a clinical context. Few studies are available of the association between clinical scores and instrumental assessment of disease severity obtained with noninvasive instruments. OBJECTIVES: To compare clinical scores in AE with biometric data in AE. METHODS: Transepidermal water loss, stratum corneum hydration, erythema, scaling and subepidermal oedema were measured. 'Scoring of Atopic Dermatitis (SCORAD)', 'Eczema Area and Severity Index (EASI)' and 'Atopic Dermatitis Severity Index (ADSI)' were used for clinical scores. Two assessments at 6-month intervals at the antecubital fossa, dorsal forearm and popliteal fossa in 101 patients with AE and 30 controls were carried out. RESULTS: Significant correlations were found within the clinical scores (P < 0.0001 and r = 0.85-0.91) and between instruments and clinical scores (P < 0.0001 and r = 0.61-0.79). CONCLUSIONS: The various instruments and clinical scores showed internal agreement and noninvasive methods correlated significantly with the three different clinical scorings systems. This observation suggests that both methods provide data of clinical (scores) and biological (instrumental measures) relevance, and may be useful in future studies of AE. It is speculated that combined measures including scores and selected instruments may be particularly useful.

Life quality assessment among patients with atopic eczema.

BACKGROUND: Quantification of quality of life (QoL) related to disease severity is important in patients with atopic eczema (AE), because the assessment provides additional information to the traditional objective clinical scoring systems. OBJECTIVES: To measure health-related QoL (HRQoL) in patients with AE; to analyse discriminant, divergent and convergent validity by examining the association between various QoL methods; and to examine the association between disease severity assessed by an objective Severity Scoring of Atopic Dermatitis (SCORAD) and QoL. METHODS: HRQoL was assessed at two visits at a 6-monthly interval in 101 patients with AE and 30 controls with one dermatology-specific questionnaire [Dermatology Life Quality Index (DLQI) or Children's DLQI (CDLQI)], one generic instrument (SF-36) and three visual analogue scales (VASs) of severity and pruritus. Objective SCORAD was used to measure disease severity. RESULTS: Patients with AE had significantly lower QoL than healthy controls and the general population. DLQI /CDLQI, pruritus, and patient and investigator overall assessment of eczema severity were significantly (P < 0.0001) and positively correlated with SCORAD, while the generic questionnaire showed only poor correlation. A gender difference was found for the mental component score of SF-36 (P = 0.019). CONCLUSIONS: AE has an impact on HRQoL. Patients' mental health, social functioning and role emotional functioning seem to be more affected than physical functioning. A simple VAS score of patients' assessment of disease severity showed the highest and most significant correlations with most of the HRQoL methods used. There is evidence to support the ability of patients with AE to make an accurate determination of their disease severity and QoL.

The handicap caused by atopic dermatitis--sick leave and job avoidance.

BACKGROUND: The handicap caused by skin diseases is insufficiently described in comparison to other types of diseases (e.g. rheumatological diseases). Estimates of disease handicap provide important data for overall disease assessment, resource planning and background data for planning possible preventive intervention studies. OBJECTIVE: Primarily to describe the degree of handicap caused by atopic dermatitis (AD) in relation to the choice of education and occupation. Secondarily to describe the frequency of social pensions awarded due to AD in Denmark and the development of pensions awarded over time. METHODS: A descriptive study based on questionnaires gathered from members of the Danish Association of Atopic Eczema. Information was obtained on age, disease duration, severity, localization of eczema and Dermatology Life Quality Index (DLQI). Additional data about sick days due to eczema and patients' choice of education or employment were obtained from the Danish Ministry of Social Affairs. RESULTS: Study population 112 (24 males and 88 females), aged 15 years and older, self-assessed morbidity was mild (1/3), moderate (1/2) or severe (approximately 1/5). Mean DLQI score was 9.67. Mean loss of working days due to AD was 5.8 days/6 months (95% CI: 0.36-11.30). The mean total loss of working days due to eczema alone was 148% of the national average, and 38% of the respondents had abstained from a specific education or a job due to AD. Since 1970, the average number of pension due to AD awarded in Denmark has grown from 4.2 per year for 1970-1976 to 18.0 per year for 1999-2002. CONCLUSION: Even mild to moderate AD causes handicap as seen from increased sick leave and the number of awarded early retirement pensions. There are therefore both individual as well as societal consequences of AD.

Parent gender and assessment of infant life quality.

OBJECTIVES: The primary objective was to examine the influence of parents' gender on the assessment of quality of life among infants with atopic dermatitis. The secondary objective was to examine the psychological factors affecting the assessment. METHODS: Questionnaires were completed by 28 couples, as a basis for gender comparison. Data were gathered on disease severity, confidence of treatment, Major Depression Index (MDI), Spielberger Trait Anxiety Inventory (STAI) and the Infants' Dermatitis Quality of Life Index (IDQOL). RESULTS: The mothers' scores were higher than those of fathers for all assessments, although differences were not statistically significant. Significant correlations were found between MDI and severity assessment for mothers only and between MDI and STAI for both genders. Multiple linear regression analysis suggested gender differences in the proposed model, where only depression was appearing statistically significant (P = 0.029). CONCLUSION: Our data presented suggest that no significant gender-dependent differences occur in parents' overall severity assessment of the eczema in their children, but the influence of the different factors studied is not equal in the two sexes. Future instruments aimed at surrogate assessment of disease severity in children by their parents should take this into account and provide explicit testing of possible gender differences.

Exercises versus arthroscopic decompression in patients with subacromial impingement: a randomised, controlled study in 90 cases with a one year follow up.

OBJECTIVES: To compare the effect of graded physiotherapeutic training of the rotator cuff versus arthroscopic subacromial decompression in patients with subacromial impingement. METHODS: Randomised controlled trial with 12 months' follow up in a hospital setting. Ninety consecutive patients aged 18 to 55 years were enrolled. Symptom duration was between six months and three years. All fulfilled a set of diagnostic criteria for rotator cuff disease, including a positive impingement sign. Patients were randomised either to arthroscopic subacromial decompression, or to physiotherapy with exercises aiming at strengthening the stabilisers and decompressors of the shoulder. Outcome was shoulder function as measured by the Constant score and a pain and dysfunction score. "Intention to treat" analysis was used, with comparison of means and control of confounding variables by general equation estimation analysis. RESULTS: Of 90 patients enrolled, 84 completed follow up (41 in the surgery group, 43 in the training group). The mean Constant score at baseline was 34.8 in the training group and 33.7 in the surgery group. After 12 months the mean scores improved to 57.0 and 52.7, respectively, the difference being non-significant. No group differences in mean pain and dysfunction score improvement were found. CONCLUSIONS: Surgical treatment of rotator cuff syndrome with subacromial impingement was not superior to physiotherapy with training. Further studies are needed to qualify treatment choice decisions, and it is recommended that samples are stratified according to disability level.

Statistical physics of grain-boundary engineering.

Percolation theory is now standard in the analysis of polycrystalline materials where the grain boundaries can be divided into two distinct classes, namely "good" boundaries that have favorable properties and "bad" boundaries that seriously degrade the material performance. Grain-boundary engineering (GBE) strives to improve material behavior by engineering the volume fraction c and arrangement of good grain boundaries. Two key percolative processes in GBE materials are the onset of percolation of a strongly connected aggregate of grains, and the onset of a connected path of weak grain boundaries. Using realistic polycrystalline microstructures, we find that in two dimensions the threshold for strong aggregate percolation c(SAP) and the threshold for weak boundary percolation c(WBP) are equivalent and have the value c(SAP) = c(WBP) =0.38 (1) , which is slightly higher than the threshold found for regular hexagonal grain structures, c(RH) =2 sin (pi/18) =0.347... . In three dimensions strong aggregate percolation and weak boundary percolation occur at different locations and we find c(SAP) =0.12 (3) and c(WBP) =0.77 (3) . The critical current in high T(c) materials and the cohesive energy in structural systems are related to the critical manifold problem in statistical physics. We develop a theory of critical manifolds in GBE materials, which has three distinct regimes: (i) low concentrations, where random manifold theory applies, (ii) critical concentrations where percolative scaling theory applies, and (iii) high concentrations, c> c(SAP) , where the theory of periodic elastic media applies. Regime (iii) is perhaps most important practically and is characterized by a critical length L(c) , which is the size of cleavage regions on the critical manifold. In the limit of high contrast epsilon-->0 , we find that in two dimensions L(c) proportional, gc/ (1-c) , while in three dimensions L(c) proportional, g exp [ b(0) c/ (1-c) ] / [c (1-c) ](1/2) , where g is the average grain size, epsilon is the ratio of the bonding energy of the weak boundaries to that of the strong boundaries, and b(0) is a constant which is of order 1. Many of the properties of GBE materials can be related to L(c) , which diverges algebraically on approach to c=1 in two dimensions, but diverges exponentially in that limit in three dimensions. We emphasize that GBE percolation processes and critical manifold behavior are very different in two dimensions as compared to three dimensions. For this reason, the use of two dimensional models to understand the behavior of bulk GBE materials can be misleading.

Scaling laws for critical manifolds in polycrystalline materials.

We study the surfaces of lowest energy through model polycrystalline materials in two and three dimensions. When the grain boundaries are sufficiently weak, these critical manifolds (CM's) lie entirely on grain boundaries, while when the grain boundaries are strong, cleavage occurs. A scaling theory for the intergranular to transgranular transition of CM's is developed. The key parameters are the average grain size g, the ratio of grain boundary to the grain interior energy, epsilon, and the sample size L. The key result is that a critical length scale exists, L(c)(g,epsilon), so that on short length scales lL(c), the critical manifold is rough. We develop a scaling theory for L(c) and find that in two dimensions L(c) approximately gx(y(2)), while in three dimensions L(c) approximately g exp(bx(y(3))), where x=epsilon/(1-epsilon) and b is a constant. Data from realistic polycrystalline grain structures are used to test the scaling theory. The exact lowest energy surface through model grain structures is found using a mapping to the minimum-cut/maximum-flow problem in computer science. As a function of grain-boundary energy, we observe the crossover from grain-boundary rupture to mixed mode failure (a mixture of transgramular and intergranular modes) and finally cleavage and that the two-dimensional data are consistent with y(2) approximately 3.0+/-0.3, while the three-dimensional data are more difficult to analyze, but are consistent with y(3) approximately 3.5+/-1.0.

Vasculitis occurring during leflunomide therapy.

Leflunomide has recently been introduced for systemic treatment of rheumatoid arthritis. It has both immunosuppressive effects and anti-inflammatory properties. We report a patient treated with leflunomide who developed vasculitis as an adverse side effect. As far as we are aware, this is the first published report of vasculitis associated with leflunomide therapy.

[Acne neonatorum/acne infantum]. / Acne neonatorum/acne infantum.

Acne is generally considered to be a disease of adolescence. However 20% of newborns have acne neonatorum, which may to be overlooked because it is usually mild and transient. Acne can also be seen in infants and children, where the skin lesions are normally more severe. We describe a case of a ten-month-old boy with severe acne without other underlying diseases. Treatment with systemic erythromycin and local application with isotretinoin gel was moderately successful, but the eruption cleared when treated with isotretinoin 0.5 mg/kg.

Dietary protein restriction and the progression of chronic renal insufficiency: a review of the literature.

It is well known that dietary protein restriction can delay the appearance of uraemic symptoms and give symptomatic relief in patients with chronic renal failure. During the last decade, several investigators have argued that protein restriction instituted at an early phase in renal disease may influence the rate of progression of renal failure favourably. Animal experiments have given strong evidence that, in the case of nephron loss, high dietary protein promotes further loss of renal function. Many studies have been conducted to investigate the possible favourable effect of a protein-restricted diet in patients with renal disease. However, the scientific proof that long-term protein restriction delays the progression of chronic renal insufficiency in man is still missing.

[Alcoholic ketoacidosis]. / Alkoholisk ketoacidose.

Alcoholic ketoacidosis is an acute metabolic disorder that occurs in ethanol abusers who because of gastritis or other concurrent illness stop eating and drinking and vomit repeatedly. This causes dehydration and ketoacidosis with little or no hyperglycaemia and glucosuria. A case of severe alcoholic ketoacidosis is presented and the literature on alcoholic ketoacidosis is reviewed.

[The yellow nail syndrome]. / De gule negles syndrom.

The yellow nail syndrome is the combination of slow growing yellow discoloured nails, lymphoedema and pleural effusion. The symptoms are supposed to be due to impaired lymphatic drainage. It is a rare clinical condition: through the last 30 years only about a hundred cases have been reported. The treatment is symptomatic (diuretics and pleuradesis). We review the literature and report four cases.

[Patterns of tuberculosis manifestation in the county of Roskilde]. / Tuberkulosens manifestationssmønster i Roskilde Amt.

The epidemiological and clinical features of all adult tuberculosis (tbc) cases in a Danish county over a 12 year period (82 cases) are presented. Most patients with pulmonary disease have thorax X-ray pictures showing pathological changes. Of the patients who only have extrapulmonary disease, 88% have normal X-ray examinations of the lungs. The patients can be divided into two groups: Danes and foreigners. The Danish patients are older, 81% are over the age of forty. They mostly have pulmonary disease (85%). They often have one or several concomitant diseases. The foreigners are younger, 90% are below the age of forty. They frequently have extrapulmonary disease (35%). They seldom have concomitant diseases.