J. de Korte

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.

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).

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.

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.

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.

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.

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.

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.

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

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).