Biomedical subjects
A Y Finlay
Publications and source records attributed to A Y Finlay.
The Children's Dermatology Life Quality Index: validation of the cartoon version.
BACKGROUND: In 1995 the Children's Dermatology Life Quality Index (CDLQI) was developed as a tool to allow quality of life assessment of children with skin conditions. This initial questionnaire was in a written format. OBJECTIVES: Using the same validated questions, a full-colour cartoon version has been developed. The aim of this study was to validate this against the initial written questionnaire in a three-part study. METHODS: The first part of the study piloted the use of both versions in an outpatient setting. One hundred and one children completed both versions of the CDLQI in a random order. A further 66 children completed the cartoon CDLQI in outpatients, and subsequently completed the cartoon version on the same day at home, which was returned by post. The scores were compared. In the second part, in more controlled conditions to eliminate parental and investigator bias, 107 children with current dermatological problems were administered both versions of the CDLQI in a random order. The scores were analysed, and time to complete each version, and the child and parental preferences, were recorded. The third part assessed compliance by asking 546 children recently reviewed in dermatology clinics to return a single completed postal CDLQI. Half of the children were given the text, and half the cartoon version. RESULTS: The median age of participating children was 11 years. There was no significant difference in scores between the two versions in both parts 1 and 2, but the cartoon version was completed faster (median 90 s) than the written version (median 120 s) (P < 0.0001). Both children and their parents significantly preferred the cartoon version and found it easier to use. Forty-six per cent of the postal CDLQI questionnaires were returned; there was no difference in compliance between the two versions. CONCLUSIONS: The cartoon CDLQI is equivalent to the previously validated written CDLQI version, but is faster and easier for children to use, and is preferred by both children and parents.
Dermatology Life Quality Index: influence of an illustrated version.
BACKGROUND: An illustrated version of the Dermatology Life Quality Index (DLQI) was developed in order to improve the ease with which this standard questionnaire is answered. OBJECTIVES: To compare the illustrated version with the text-only version of the DLQI. METHODS: The two versions were administered to 206 patients attending Dermatology outpatient clinics. The time taken to complete either the illustrated or the text-only version was noted in 52 additional patients. RESULTS: One hundred and ninety-one of 206 patients completed both questionnaires satisfactorily. Their mean DLQI scores were 6.4 (median 4.0, lower quartile 1.0, upper quartile 11.0) for the illustrated version and 6.3 (median 4.0, lower quartile 1.0, upper quartile 10.0) for the text-only version. For the 98 patients who answered the illustrated version first, the mean DLQI scores were 6.9 (median 4.0, lower quartile 1.9, upper quartile 11.9) for the illustrated version and 6.4 (median 4.0, lower quartile 1.8, upper quartile 11.0) for the text-only version. For the 93 patients who answered the text-only version first, the mean DLQI scores were 5.9 (median 4.0, lower quartile 1.7, upper quartile 10.2) for the illustrated version and 6.2 (median 5.0, lower quartile 0.5, upper quartile 9.5) for the text-only version. The median time taken to complete the text-only version was 124 s (mean +/- SD 126 +/- 65, n = 27) and 88 s (mean +/- SD 101 +/- 52, n = 25) for the illustrated version (P = 0.08). There was a very close correlation (r = 0.98) between the scores of the text-only and the illustrated versions; 82.2% of patients either scored the same or had a DLQI score difference of only 1. One hundred and seven (59.8%) patients preferred using the illustrated version and 66 (36.9%) preferred the text-only version. One hundred and four (57.5%) found the illustrated version easier to use. CONCLUSIONS: The illustrated version was superior to the text-only version in terms of patient preference and ease of use, but it was not possible to demonstrate exact equivalence between the two versions.
Intramuscular alefacept improves health-related quality of life in patients with chronic plaque psoriasis.
BACKGROUND: Psoriasis profoundly affects patient quality of life (QOL). Amevive (alefacept), a novel and selective biologic agent, was clinically effective and significantly improved QOL in a phase 2 study. METHODS: The present placebo-controlled, randomized phase 3 study examined the effects of a 12-week course of intramuscular alefacept on QOL in 507 patients with chronic plaque psoriasis using both dermatology-specific questionnaires [Dermatology Life Quality Index (DLQI); Dermatology Quality of Life Scales (DQOLS)] and the Short Form-36 Health Survey (SF-36), a generic, general health questionnaire. RESULTS: All 3 QOL measures (DLQI, DQOLS, SF-36) demonstrated that alefacept 15 mg was significantly more effective than placebo in improving QOL in patients with chronic plaque psoriasis. In addition, the improvements in QOL for patients in the alefacept 15 mg group were of similar magnitude for all 3 QOL measures. CONCLUSION: The findings of this study are an important addition to the QOL literature for psoriasis treatments.
Patients' and doctors' assessment of skin disease handicap.
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Training inspection visits--pushing up quality of training in Europe.
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The Infants' Dermatitis Quality of Life Index.
BACKGROUND: The impact on quality of life (QOL) caused by atopic dermatitis (AD) has been quantified in children and adults using established QOL measures. However, these are not suitable for use in infants under the age of 4 years, when AD usually develops. OBJECTIVES: To validate a new parent-generated QOL questionnaire, the Infants' Dermatitis QOL Index (IDQOL), which measures the impact of AD on the infant, and to provide further validation of the Family Dermatitis Index (FDI), which measures the impact of a child's dermatitis on the family. METHODS: Parents of 102 predominately caucasian infants under 4 years with AD (34 postal and 68 outpatients) were asked to complete the IDQOL and the FDI on two separate occasions to test for repeat validity. The Infants' Behavioural Check List (BCL) was also given to the study group and to parents of 22 normal control infants. Post-treatment IDQOL and FDI questionnaires were obtained from 25 of the study group. RESULTS: The return rate for initial questionnaires was 87.3% (61 boys, 28 girls) and for retest 70.6%. The mean score for IDQOL was 7.89 and for FDI 8.87. Spearman rank correlation between the IDQOL and FDI was high (r = 0.87). Correlations of IDQOL and FDI with clinical severity assessment by parents were lower (r = 0.58 for IDQOL and r = 0.5 for FDI). Test-retest data for IDQOL and FDI confirmed repeatability, there being negligible differences between the pairs using the method of Bland and Altman. The three highest scoring questions for IDQOL referred to itching and scratching, mood change and sleep disturbance. For the FDI they were parental sleep disturbance, tiredness and exhaustion, and emotional distress. Post-treatment questionnaires from 25 patients indicated sensitivity to clinical change with both IDQOL and FDI. Parameters of behaviour measured using the BCL in 82 study infants and 22 controls showed greater problems with frequent night-time wakening (43% vs. 4.5%) and miserable mood changes (24.4% vs. 9%) in the study infants. CONCLUSIONS: Initial validation of the IDQOL and further validation of the FDI show good test-retest repeatability and apparent sensitivity to change with treatment. The effect on health-related QOL as measured by these methods is poorly correlated with clinical severity, confirming that QOL measures should be used in conjunction with clinical measures for global assessments of disease impact. This work requires further validation but suggests that QOL measures may be useful as outcome measures in clinical practice and research. Their simple construction allows quick and easy use, which is particularly valuable in large-scale and postal studies.
Thalidomide usage in Wales: the need to follow guidelines.
BACKGROUND: Thalidomide is a potentially useful drug for several dermatological disorders. OBJECTIVES: To assess prescribing and monitoring practices for this drug in Wales. METHODS: A questionnaire was completed by 17 of 19 consultant dermatologists concerning thalidomide usage in Wales (population 2.93 million). RESULTS: Eleven of the 17 respondents had used thalidomide in 40 patients. Only two consultants gave information leaflets and only five obtained written consent. Four obtained baseline nerve conduction studies and nine obtained these during therapy. Of seven women of child-bearing age currently taking thalidomide, none had had baseline pregnancy tests. CONCLUSIONS: We describe variability in prescribing practices for thalidomide. Published guidelines are reviewed and suggestions made concerning consent forms, pregnancy testing, nerve conduction studies and patient information.
Quality of life and clinical outcome in psoriasis patients using intermittent cyclosporin.
BACKGROUND: Psoriasis causes considerable patient morbidity and can seriously affect a patient's quality of life (QoL). OBJECTIVES: To investigate the relationships between changes in QoL and measures of severity and extent of disease, and itch, in patients with chronic plaque psoriasis receiving intermittent short courses of cyclosporin (Neoral). METHODS: This study was performed as part of an international trial investigating the safety, efficacy and total costs of intermittent short courses of cyclosporin (the PISCES study). All patients received cyclosporin until clearance and were then followed up until relapse. On relapsing, patients received another course. Patients were followed up for a minimum of 1 year during which they could receive as many courses of treatment as necessary. In a subgroup (n = 255) of patients in the trial, the Dermatology Life Quality Index (DLQI) was used to assess the impact of psoriasis and its treatment on the patients' health status at the beginning and end of each treatment period. At the beginning and end of each treatment period, as well as at 2-weekly visits, the extent and severity of disease, together calculated into a modified Psoriasis Area and Severity Index (PASI), and itch were recorded. Data were analysed using the Wilcoxon matched pairs test, multivariate Hotelling's T2 tests, and Spearman's rank correlation coefficients (rs). RESULTS: During treatment, a clear impact on the overall DLQI scores and in the scores in all six DLQI headings was found (i.e. an improvement in QoL; P < 0.001 in all scores). Also, significant decreases in PASI and itch scores were found (P < 0.001). Multivariate analyses confirmed that a decrease in PASI and itch scores was accompanied by an impact on the DLQI scores during and between the two treatment periods (P < 0.0001). Statistically significant but weak correlations were found between changes in QoL and changes in PASI (rs = 0.40 and 0.24 for the first and second treatment periods, respectively) and itch scores (rs = 0.31 and 0.42, respectively). CONCLUSIONS: Intermittent short courses of cyclosporin clearly improve the QoL of the patients and decrease the extent and severity of disease and itch. Changes in clinical outcome scores are accompanied by changes in QoL. The weak correlations between changes in QoL and clinical measures may suggest that no clear relationship between QoL and clinical outcomes exists. However, due to the inclusion and exclusion criteria of the study, both QoL and clinical outcome measures do not show much variation among this homogeneous group of patients. As long as the relationship between clinical outcome parameters and measures of QoL is not completely clear, both measures of health should be considered in adequate, patient-orientated clinical decision making.
Vitiligo following narrow-band TL-01 phototherapy for psoriasis.
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The effect of hair loss on quality of life.
BACKGROUND: The aim of this study was to quantify the effect of hair loss on quality of life. Patients were recruited from an alopecia support group, and were assessed using the Dermatology Life Quality Index (DLQI) and an adapted version of the DLQI. Financial utility questions, an abbreviated version of the Center for Epidemiologic Studies Depression Scale and open-ended questions were also used. OBSERVATIONS: Seventy (90% response rate) questionnaires were returned. DLQI scores in responders with hair loss (mean score = 8.3, SD = 5.6, range 0-23, n = 70) were similar to those recorded in severe psoriasis. The hair loss continued to have a significant impact on life quality well after the initial event (median duration of hair loss = 138 months +/- 114; range 7-588, n = 70). Forty per cent of patients also felt dissatisfied with the way in which their doctor dealt with them. CONCLUSIONS: This study specifically identifies the feelings of loss of self-confidence, low self-esteem and heightened self-consciousness in people affected by hair loss.
Quality of life in atopic dermatitis.
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Cyclosporin for atopic dermatitis in children.
This paper details a UK consensus conference held in London in April 2000 to establish guidelines for the use of cyclosporin A for atopic dermatitis in children. It should be reserved for the severest refractory atopic dermatitis. In view of its potential toxicity, careful monitoring is mandatory, in particular blood pressure and renal function.
Psoriasis from the patient's point of view.
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Inpatient dermatology. United Kingdom and United States similarities: moving with the times or being relegated to the back bench?
Financial and managerial pressures have resulted in the rationalization of inpatient dermatology beds in the United Kingdom. Although these two countries have different populations and health care systems, both have been subject to similar drives toward cost containment. Advances in dermatology have broadened the reach of outpatient-based dermatological care that provides for most skin patients; however, inpatient treatment remains an important and essential therapeutic option for a group of patients. Dermatologic inpatient care may be inadequately and inefficiently provided by nondermatologists. It is important to ensure that the quality of dermatology inpatient services is maintained at the highest standard while using, and working within, a constantly evolving system of health care. Only then can dermatologists tailor the specialty to maximize the benefits for the patients and the profession as a whole.
Cyclosporin for severe childhood atopic dermatitis: short course versus continuous therapy.
Cyclosporin (CyA) has been shown to be highly effective and well tolerated in the short-term treatment of severe childhood atopic dermatitis; however, there is limited experience in its longer-term use. The aim of this study was to compare multiple short courses of CyA with continuous therapy for 1 year, with respect to efficacy, safety, tolerability and quality of life. Children aged 2-16 years, with a diagnosis of severe atopic dermatitis refractory to topical steroid therapy, were randomly assigned to receive short course therapy (multiple courses of 12 weeks) or continuous therapy. The starting dose and maximum dose for all patients was 5 mg/kg per day. Disease activity was monitored using the Six Area Six Sign Atopic Dermatitis score and the 'Rule of Nines' area score. Pruritus, sleep disturbance and irritability were measured using visual analogue scales, and topical therapy was monitored. Safety measurements included monitoring of serum creatinine, blood pressure and adverse events. Forty patients were included in the efficacy analysis, 21 of whom were randomized to the short course group (of whom six were withdrawn) and 19 to the continuous group (of whom five were withdrawn). Significant improvements were seen in all efficacy parameters at every time-point. There were no significant differences between groups, although the improvement was more consistent in the continuous arm. In the short course arm, 7 out of 21 patients could be managed by at least two short courses. The remaining 14 patients includes 12 who could not be controlled by at least two short courses, one patient who failed to return after week 12 and another patient who was withdrawn at week 4 due to an adverse event. Quality of life improved for both the children and their families. Tolerability was considered good or very good in at least 80% of the patients at week 12 and at the end of the study. No clinically significant change was seen in mean serum creatinine and no change was seen in mean blood pressure in either group. CyA is effective in controlling severe atopic dermatitis in children over a 1-year period and is well tolerated. More consistent control is achieved with continuous treatment; however, short course therapy was adequate for some patients, indicating that treatment should be tailored to the individual patient's needs. Short course treatment may produce prolonged remission in some cases and reduce the cumulative exposure to the drug.
Staphyloccocal scalded skin syndrome in healthy adults.
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Impaired quality of life of adults with skin disease in primary care.
BACKGROUND: Although 75% of skin problems are managed exclusively in primary care, most information on the impact of skin disease on quality of life is hospital based. OBJECTIVES: To examine the ease of use of the Dermatology Life Quality Index (DLQI) in primary care and to measure the handicap levels found, analysed by skin disease, sex and age. METHODS: The handicap levels identified were compared with those published for patients with the same conditions attending hospital clinics. Some conditions that rarely present in secondary care were also studied. RESULT: S The overall mean +/- SD DLQI score was 7.37 +/- 5.71 (women 7.8 +/- 5.8, n = 196; men 6.8 +/- 5.6, n = 145). The scores for separate diseases were similar in ranking and only slightly lower than those in hospital-based studies. The possibility of bias towards surveying an unrepresentative sample of patients is discussed. There was no correlation between age and DLQI score. CONCLUSIONS: The DLQI proved easy to use in general practice. The impact of skin diseases on the quality of life of patients seen in primary care is comparable with that of patients seen in secondary care. This information could be used to inform the planning of services for these patients.