Patients with lichen sclerosus experience moderate satisfaction with treatment and impairment of quality of life: results of a cross-sectional study.

BACKGROUND: Although they are considered relevant, little is known about satisfaction with treatment and health-related quality of life (HRQoL) among patients with lichen sclerosus (LS). OBJECTIVES: In a cross-sectional study, we aimed to examine (i) satisfaction with treatment, (ii) patient characteristics associated with satisfaction and (iii) HRQoL in Dutch patients with LS. METHODS: Members of the Dutch LS Patient Association (n = 750) were invited to complete a web-based survey. We measured satisfaction with treatment with a study-specific questionnaire, and HRQoL with the Skindex-29. We calculated domain scores for symptoms, emotions and functioning, and categorized scores into little, mildly, moderately or severely impaired HRQoL. We used a multiple linear regression analysis to examine whether patient characteristics were associated with treatment satisfaction. RESULTS: In total 303 patients (40·4%) were included. Patients under current treatment (n = 265, 87·5%) were moderately satisfied with their treatment. Patients rated 'treatment effectiveness' as most important, although 58 (22%) were dissatisfied with the effectiveness of their current treatment. More impairment on the HRQoL emotions domain and a higher degree of disease severity were both associated with lower satisfaction with treatment and explained in total 13·5% of the variance in treatment satisfaction. On all HRQoL domains, one-third of the patients (range 34·7-38·9%) reported severe impairment. CONCLUSIONS: Patients with LS are moderately satisfied with their treatment, and one-third of patients experience severe impairment of HRQoL. To improve dermatological care, we recommend enhancement of doctor-patient communication, information provision and organization, which may be more amenable to change than treatment effectiveness or safety.

Consumer Quality Index Chronic Skin Disease (CQI-CSD): a new instrument to measure quality of care from the patient's perspective.

BACKGROUND: Assessing quality of care from the patient's perspective is considered to be highly relevant. As a standardized instrument in dermatology was lacking, we developed a patient experience questionnaire regarding chronic skin disease care: the Consumer Quality Index Chronic Skin Disease (CQI-CSD). OBJECTIVES: (i) To evaluate the dimensional structure of the CQI-CSD, (ii) to assess its ability to distinguish between hospitals according to patients' experiences with quality of care, (iii) to explore patients' experiences with dermatological care and priorities for quality improvement according to the patients, and (iv) to optimize the questionnaire based on psychometric results and stakeholders' input. METHODS: In a cross-sectional study 5647 adult patients who received dermatological care in the past 12 months in 20 hospitals were randomly selected and invited to fill out the questionnaire. RESULTS: Overall 1160 of 3989 eligible respondents (29% response rate, 30-87 per hospital) were included for analysis. The CQI-CSD comprised seven scales with high internal consistency (Cronbach's α = 0·74-0·92). The instrument's discriminative power was limited. Patients were positive about the care provided by nurses and doctors, but the provision of information by healthcare providers, accessibility of care and patient involvement could be improved. We optimized the CQI-CSD, resulting in a revised questionnaire containing 65 items. CONCLUSIONS: In conclusion, the CQI-CSD is a useful instrument to measure patient experiences with dermatological care.

EADV Taskforce's recommendations on measurement of health-related quality of life in paediatric dermatology.

The impact of skin conditions in children can profoundly affect a variety of lifestyle parameters that may have important personal consequences. Several national guidelines for children with different skin conditions recommend health-related quality of life (HRQoL) measurement as part of the assessment process. HRQoL also plays an important role in educational programmes for children with chronic skin conditions and their parents. In this paper, the EADV Taskforce on Quality of life provides researchers and clinicians data on the achievements in this field, as well as the peculiarities of HRQoL assessment in children, and an overview of the most commonly used and validated generic, dermatology-specific and disease-specific instruments related to paediatric dermatology. Finally, an analysis of the current problems of HRQoL assessment in children with skin diseases and directions for future studies are also discussed. The main goal of this paper is to help dermatologists decide which HRQoL instrument to use with children, depending on the context.

Summary of the Dutch S3-guidelines on the treatment of psoriasis 2011. Dutch Society of Dermatology and Venereology.

This document provides a summary of the Dutch S3-guidelines on the treatment of psoriasis. These guidelines were finalized in December 2011 and contain unique chapters on the treatment of psoriasis of the face and flexures, childhood psoriasis as well as the patient's perspective on treatment. They also cover the topical treatment of psoriasis, photo(chemo)therapy, conventional systemic therapy and biological therapy.

Satisfaction with treatment among patients with psoriasis: a web-based survey study.

BACKGROUND: Various psoriasis treatments are currently available: topical therapy, photo(chemo)therapy, oral agents and biologics. Little is known about patients' satisfaction with these treatment options. Moreover, the few available studies show methodological shortcomings. OBJECTIVES: To answer the following questions: firstly, how satisfied are patients with psoriasis with their current treatment and does patients' satisfaction significantly differ between treatment types when controlling for demographic and clinical factors? Secondly, how important are specific domains of satisfaction to patients, and when taking perceived importance into account, which domains merit the most attention in improving quality of care? METHODS: Members of the two existing Dutch associations for patients with psoriasis were invited to complete a web-based survey, which included a study-specific satisfaction questionnaire. RESULTS: A total of 1293 patients completed the survey (response rate 32%). Overall, patients were moderately satisfied with their current treatment. Patients receiving topical treatment were significantly least satisfied; patients receiving biologic treatment were significantly most satisfied. Overall, patients rated 'treatment effectiveness' as most important, followed by 'treatment safety' and 'doctor-patient communication'. Domains with the highest 'room for improvement' scores were effectiveness of topical therapy, phototherapy and oral agents (but not biologic treatment), convenience of topical treatment and safety of systemic treatments (both oral agents and biologics). CONCLUSIONS: From the perspective of patients, biologic treatment is promising. To improve further the quality of psoriasis care, the effectiveness and convenience of topical therapies, the safety of systemic therapies, and doctors' communication skills need to be addressed.

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.

Health-related quality-of-life assessment in dermatologic practice: relevance and application.

Health-related quality of life (HRQoL) is gradually becoming a standard outcome in clinical research and health care management. Nevertheless, application in dermatologic practice is not customary and many practical and attitudinal barriers need to be overcome. To contribute to the discussion on and the implementation of HRQoL assessment in routine dermatologic practice, this article describes (1) why HRQoL assessment is relevant for dermatologic practice, (2) which patients would benefit most from routine HRQoL assessment, and (3) how HRQoL assessment can be applied in clinical practice.

A randomized comparison of excimer laser versus narrow-band ultraviolet B phototherapy after punch grafting in stable vitiligo patients.

Background Ultraviolet radiation following punch grafting may stimulate the migration of melanocytes from the grafts into the vitiliginous skin, thereby increasing the rate of repigmentation. We compared the effects of the 308-nm xenon chloride excimer laser (EL) vs. narrow-band ultraviolet B (NB-UVB) after punch grafting in patients with vitiligo. Objectives The aims of this study were to evaluate (i) repigmentation (%); (ii) treatment satisfaction; and (iii) patient preferences for EL vs. NB-UVB therapy after punch grafting in vitiligo. Methods Fourteen patients were treated with the punch-grafting technique on two symmetrical vitiligo patches. Starting 1 week after the punch grafting, the vitiligo patches were treated twice a week during 3 months, with EL on one side and with NB-UVB on the other side. Repigmentation (%) was measured by a digital image analysis system. Patients' satisfaction and preference for treatment were also assessed. Results Whereas both treatment modalities induced repigmentation, no statistically significant difference was found in grade of repigmentation after 3 months. With EL, 71.4% lower cumulative dose was reached. Patients were significantly more satisfied with NB-UVB and preferred it over EL. Conclusions The choice between EL and NB-UVB cannot solely be based on repigmentation, but rather on other factors, such as patients' preferences. However, given the lower UV dose of EL, we recommend its use in vulnerable populations, such as in small children and patients with sun-damaged skin with a history of long-term UVB treatment.

Impact of childhood vitiligo on adult life.

BACKGROUND: The onset of vitiligo occurs before the age of 20 years in 50% of patients. Having a chronic disease in childhood can impede a child's health-related quality of life (HRQL). OBJECTIVES: Firstly, to compare the social and psychosexual development and current HRQL of young adult patients with childhood vitiligo with those of a group of healthy controls. Secondly, to compare these outcomes in patients reporting negative childhood experiences with those of patients not reporting negative childhood experiences. METHODS: Eligible patients were mailed questionnaires on (i) sociodemographic and clinical characteristics, (ii) social and psychosexual development, (iii) generic and dermatology-specific HRQL, (iv) presence of negative childhood experiences related to vitiligo, (v) specification of these negative experiences and (vi) patients' recommendations for further care. RESULTS: A total of 232 patients with vitiligo completed the questionnaires. Social and psychosexual development and generic HRQL in young adult patients with childhood vitiligo were not different from those of healthy controls. However, patients reporting negative childhood experiences reported significantly more problems in social development than those not reporting negative experiences. Furthermore, negative childhood experiences were significantly associated with more HRQL impairment in early adulthood. CONCLUSIONS: Reporting negative experiences from childhood vitiligo appears to be associated with HRQL impairment in young adults with vitiligo.

A comparison of twice-daily calcipotriol ointment with once-daily short-contact dithranol cream therapy: quality-of-life outcomes of a randomized controlled trial of supervised treatment of psoriasis in a day-care setting.

BACKGROUND: Calcipotriol ointment and short-contact dithranol cream therapy are well-established topical treatments for psoriasis. Quality of life, i.e. the physical, psychological, and social functioning and well-being of the patient, has become an essential outcome measure in chronic skin disease. OBJECTIVES: To compare the quality-of-life outcomes of calcipotriol ointment with that of short-contact dithranol cream in a supervised treatment regimen, and to determine the degree of improvement in quality of life these topical treatments can accomplish. METHODS: In a multicentre randomized controlled trial in six centres in the Netherlands, 106 patients with chronic plaque psoriasis were included, 54 receiving calcipotriol ointment twice daily and 52 dithranol cream once daily in a 12-week intensive treatment programme. Patients were treated at the day-care centre, using the care instruction principle of daily visits during the first week and twice-weekly visits subsequently for up to 12 weeks. Quality of life was assessed with the Skindex-29 and the Medical Outcomes Study 36-item Short-Form General Health Survey (SF-36). RESULTS: At the end of treatment, no statistically significant differences were found between the calcipotriol and the dithranol group in any of the quality-of-life domains or scales of the Skindex-29 and the SF-36. Over time, a significant improvement of quality of life was found on all three scales of the dermatology-specific Skindex-29, predominantly of a moderate magnitude. In the calcipotriol group, a significant change of a small magnitude was found in the Physical Component Summary of the SF-36. No significant changes were found in the Mental Component Summary (or on any of the eight scales composing the questionnaire) of the SF-36. CONCLUSIONS: The hypothesis was confirmed, that no statistically significant differences in improvement of quality of life could be found between calcipotriol ointment and dithranol short-contact cream in a day-care setting. Given this result, both calcipotriol and dithranol can be welcome alternatives for the patient. Calcipotriol, being more practical and patient friendly, can be considered as a first-line approach in clinical practice. However, in patients recalcitrant to calcipotriol and/or other topical treatments, preference should be given to the dithranol regimen. Topical treatment in combination with interventions explicitly focusing on improvement of coping behaviour and psychosocial functioning may further increase the degree of improvement in the psychosocial domains of quality of life. The results of this study are likely to give further evidence to the notion that the generic SF-36 is little or not responsive to small to moderate changes in quality of life in mild to moderate psoriasis.

Quality of care in patients with psoriasis: an initial clinical study of an international disease management programme.

BACKGROUND: Patients with psoriasis have to cope with their disease for many years or even throughout their entire life. To provide optimal care, a disease management programme was developed. This programme consisted of disease education, disease management training, and psychological support, together with topical treatment. OBJECTIVE: To test a disease management programme in dermatological practice, to assess patients' satisfaction with this programme, and adherence to topical treatment. Additionally, disease severity and quality of life were assessed. METHODS: An initial clinical investigation was conducted in 10 European treatment centres. A total of 330 patients were included. Patient satisfaction, adherence, disease severity and quality of life were measured with study-specific and standardized self-report questionnaires. RESULTS: Patients reported a high degree of satisfaction with the programme, and a high degree of adherence to topical treatment. Disease severity and quality of life significantly improved. The programme was well received by the participating professionals. CONCLUSIONS: The disease management programme was found to be a useful tool in the management of psoriasis, providing patients with relief from the burden of psoriasis in everyday life. A full-scale evaluation is recommended.

Patient compliance and disease management in the treatment of psoriasis in the Netherlands.

BACKGROUND: Compliance behaviour and disease management are important issues in chronic skin diseases. Psoriasis patients are 'experts by experience' because of many years of treatment. Therefore, it is relevant to gather data from patients on the actual use of antipsoriatic treatments. OBJECTIVE: The following questions are addressed: (1) What is the present mode of prescription and actual use of antipsoriatic treatments, including topical treatments, photo(chemo)therapy and systemic treatments? (2) What information do patients expect from their doctor, and do they actually receive this information. METHODS: To answer these questions, a questionnaire survey was mailed to the subscribers of Psoriasis, the journal of the Dutch Psoriasis Patients' Organisation. RESULTS: (1) Major issues in the treatment of psoriasis are (a) long-term management, (b) control of mild, moderate but also extensive psoriasis and (c) control of psoriasis on difficult localisations. Patients perceive itch, scaliness and visibility as major criteria for efficacy. (2) Topical treatment is the mainstay in the management of psoriasis. Calcipotriol is the most prescribed drug. Photo(chemo)therapy has an intermediate position between topical and systemic treatments. UVB is prescribed more than twice as frequently as PUVA and 10% of the patients on photo(chemo)therapy proved to be treated with UVB at home. Only 16% of the patients were on a systemic treatment; methotrexate and acitretin were the most frequently used systemic treatments. (3) More than 70% of the patients indicated that they had taken part in the selection of a treatment. In general, the patients were satisfied about the contact with their dermatologist and general practitioner. Compliance with the duration of treatment is limited, especially with regard to topical treatment. Patient compliance with the dose of the treatment is better. Again compliance is the worst in topical treatments. (4) Patients have a strong preference for an effective treatment which is safe for long-term use. Only a minority of patients wants a fast clearing treatment. CONCLUSION: Itch, scaliness and visibility provide the most relevant information on the severity of psoriasis, as the patients perceive themselves. Treatment duration is often unrestricted, especially with regard to topical treatments, which implies that the cumulative toxicity potential of these treatments may have a serious impact on their safety profile. Patients regard it of importance to have a vote in the selection of the treatment and regard safety as more important than fast clearing.

Scalp psoriasis, clinical presentations and therapeutic management.

BACKGROUND: The scalp is a well-known predilection site for psoriasis. Many patients indicate that scalp psoriasis is both psychologically and socially distressing. OBJECTIVE: The aim of the present investigation is to provide epidemiological data on the various manifestations of scalp psoriasis, as well as on its therapeutic management. METHODS: A questionnaire, targeted on scalp psoriasis, was mailed to patient subscribers of a Dutch journal on psoriasis. In total 1,023 forms were returned and evaluated. RESULTS: Remarkably, a relatively high occurrence of facial psoriasis (25%) and nail psoriasis (40%) was recorded. The dynamics of scalp psoriasis were rather similar to psoriasis at other sites with respect to the total duration of the disease and exacerbations/remissions. In 57% of the patients, psoriasis was psychologically and socially distressing, at least occasionally. Itch and scaling proved to be the leading symptoms, in terms of frequency of occurrence as well as in terms of distress. Therefore, these parameters should be regarded as primary efficacy criteria in the treatment of scalp psoriasis. On average, most patients were seen by the dermatologist 5 times a year. The majority of prescriptions (76%) was given by the dermatologist. The application of topical corticosteroids was by far the most frequent treatment modality. To our surprise, calcipotriol was used by 28% of patients. At the time of investigation calcipotriol was only available as ointment. Tar shampoos were used by 51% of the patients, although the clinical efficacy of such a shampoo has never been demonstrated in a controlled study. A remarkable observation was the lack of instruction on the duration of treatment and the frequency of applications. In fact, 72% of the patients used topical treatments, including topical corticosteroids, for more than 8 weeks, and 42% of the patients used an intermittent schedule of a few applications per week. CONCLUSIONS: Based on the present survey, the following profile for an optimal treatment of scalp psoriasis can be constructed: (1) effective applications a few times per week; (2) either a lotion or an emulsion, and (3) safety for long-term use.

Enigmatic phylogeny of skuas (Aves:Stercorariidae)

Multiple sources of evidence show that the skuas (Aves:Stercorariidae) are a monophyletic group, closely related to gulls (Laridae. On morphological and behavioural evidence the Stercorariidae are divided into two widely divergent genera, Catharacta and Stercorarius, consistent with observed levels of nuclear and mitochondrial gene divergence. Catharacta skuas are large-bodied and with one exception breed in the Southern Hemisphere. Stercorarius skuas otherwise known as jaegers) are smaller bodied and breed exclusively in the Northern Hemisphere. Evidence from both mitochondrial and nuclear genomes and from ectoparasitic lice (Insecta:Phthiraptera) shows that the Pomarine skua, S. pomarinus, which has been recognized as being somewhat intermediate in certain morphological and behavioural characteristics, is much more closely related to species in the genus Catharacta, especially to the Northern Hemisphere-breeding Great skua, C. skua, than it is to the other two Stercorarius skuas, the Arctic skua, S. parasiticus and the Longtailed skua, S. longicaudus. Three possible explanations that might account for this discordant aspect of skua phylogeny are explored. These involve (i) the segregation of ancestral polymorphism, (ii) convergent evolution of morphology and behaviour or (iii) inter-generic hybridization. The available evidence from both nuclear and mitochondrial genomes does not exclude any of these hypotheses. Thus, resolution of this enigma of skua phylogeny awaits further work.

[The treatment of psoriasis in a day care center]. / Behandeling van psoriasis in een dagbehandelingscentrum.

We describe the treatment of 196 patients with psoriasis, in the psoriasis day care centre at Ede. Treatments involve salt water baths followed by radiation of UVB, additional radiation of the scalp and therapy-resistant parts of the skin and anthralin 'short contact therapy'. During the anthralin therapy the hairy scalp is treated with liq. carb. dexerg. 5% in soya oleum. The results were evaluated by means of the psoriasis area and severity index (PASI) and of a questionnaire which was completed by 144 patients. In an average course of 28.4 treatment sessions (range 9-51), the PASI decreased by 84.3%. Evaluation of the PASI included the hairy scalp, the axillae and the inguinal region. The answers to the questionnaire indicated a risk of rather rapid relapse however, according to many patients, only a small part of the skin surface was affected. The additional value of the treatment is attributed to the setting of the psoriasis day care centre and the relatively safe therapeutic possibilities offered there.

New triple-lumen balloon catheter for percutaneous (pulmonary) valvuloplasty.

Percutaneous transluminal balloon pulmonary valvuloplasty has been performed since 1982. In publications, the most critical problems mentioned are severe systemic hypotension and bradycardia due to stasis of blood flow. A triple-lumen balloon was developed to allow more rapid inflation and deflation and to preserve the preexistent forward blood flow during maximal inflation. Only a slight systemic hypotension and no bradycardia were seen in the first two patients with pulmonary valve stenosis treated with this type of balloon. Thus, the maximal inflation time is not a critical parameter, whereas with the former types of balloon, maximal inflation times were critical, and, if longer than 5 to 10 sec, severe systemic hypotension was registered. We conclude that the triple-lumen pulmonary valve-dilatation balloon catheter is superior to the single-lumen balloon catheter used up to now.