Translation and Validation of the Dutch Version of the Sun Exposure and Protection Index.

INTRODUCTION: Skin cancer is currently the most common cancer type worldwide, and numbers are rapidly increasing. To improve primary prevention, individualised prevention strategies may be of interest as this enhances the chance of long-term behavioural change. The Sun Exposure and Protection Index (SEPI), previously validated in multiple languages, is a tool that could help identify individuals with risky behaviour and tailor interventions to the person's propensity to change. The aim of the present study was to investigate the reliability and validity of a Dutch version of the SEPI for both usage in daily clinical practice and research. METHODS: Patients were included at primary care settings and dermatology outpatient settings in a 1:1 ratio. Participants were asked to fill out the SEPI together with some baseline characteristics and the previously validated FACE-Q Skin Cancer - Sun Protection module. Construct validity was tested by comparing SEPI part I and the FACE-Q module using Spearman's Rho. Internal consistency was assessed with Cronbach's Alpha for both SEPI parts separately. To assess test-retest reliability, the SEPI was again filled out 3 weeks later, and scores were compared with Cohen's weighted Kappa. RESULTS: Of the 171 participants completing the first questionnaire, 147 (86.0%) participants also completed the follow-up questionnaire. Comparison between the corresponding SEPI part I and FACE-Q module questions showed good correlations regarding sun exposure habits (correlation coefficients ranging from 0.61 to 0.85). Internal consistency of SEPI part I was 0.63 and SEPI part II was 0.65. The test-retest analysis indicated reproducibility over time (weighted Kappa ranging from 0.38 to 0.76). CONCLUSION: In conclusion, the Dutch version of the SEPI is shown to be a valid and reliable tool for both usages in daily clinical practice and research to evaluate individual ultraviolet exposure and measure a person's propensity to limit it.

Skin Distress Screening: Validation of an Efficient One-question Tool.

Skin diseases are often accompanied by physical, emotional and social problems, which may negatively impact health-related quality of life and result in skin-related distress. It is essential to identify patients with skin-related distress within the short time-window of an outpatient dermatological visit. Therefore the one-question screening tool, the Distress Thermometer adjusted for skin conditions, was validated in a cross-sectional questionnaire study. In 2 medical centres in Amsterdam, 214 patients with a chronic skin disease were invited to complete the Distress Thermometer and additional health-related quality of life questionnaires. To validate the Distress Thermometer, the Skindex29 was used as gold standard. To test test-retest reliability, the questionnaires were answered at 2 different time-points. Severely impaired health-related quality of life was present in 30% of respondents according to the Skindex29 using a cut-off score of 44. Receiver operating characteristic curve analyses yielded an area under the curve of 0.813 (standard error 0.04, 95% confidence interval 0.74-0.89). A cut-off score ≥ 4 on the Distress Thermometer provided the optimal ratio of sensitivity (90.7%) to specificity (56.1%). Therefore, for general practice, a cut-off score of ≥ 4 on the Distress Thermometer is advised. The Distress Thermometer seems to be a rapid, valid and reliable screening tool for identifying skin-related distress in patients with a chronic skin disease in the outpatient dermatology setting.

Which Health-Related Quality of Life Items Most Affect Acne Patients?

BACKGROUND: Health-related quality of life (HRQoL) assessment in patients with acne is recommended by several national guidelines. There are several acne-specific HRQoL instruments. OBJECTIVES: Participants of the European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on QoL and Patient Oriented Outcomes (PO) and Acne, Rosacea, and Hidradenitis Suppurativa (ARHS) agreed to scrutinize aspects of existing acne-specific HRQoL instruments for their relevance in international study. METHODS: Consensus agreement on items related to QoL was reached after an independent assessment by seven experts from the EADV TFs on QoL and PO, and a list of 97 items was prepared and proposed to a group of acne patients. In order to have data from patients to check if any important topics were overseen, another group of acne patients from participating countries was asked to list how acne influenced different aspects of their lives. RESULTS: Based on results obtained from 601 acne patients from nine countries, most of the items and topics showed low relevance for acne patients especially during the previous month or shorter time periods. Based on percentage of relevance and factor analysis, short (6 items) and long (45 items) lists of the most relevant topics were formed. CONCLUSION: Most of the items and topics from the initial list showed low relevance for acne patients. None of the identified acne-specific HRQoL instruments contain all the items that were deemed most relevant to acne patients. For this reason, participating members of the EADV TFs on QoL and PO, and ARHs are in the process of developing a new acne-specific HRQoL instrument.

Influence of infantile hemangioma severity and activity on QoL of patients and their parents: A cross-sectional study.

BACKGROUND: Quality of life (QoL) data are lacking in children with infantile hemangioma (IH) and their parents/caregivers. Available data are conflicting. OBJECTIVES: To determine QoL of (parents of) patients with IH in the proliferative phase related to IH-severity and activity. METHODS: Parents of 59 IH-patients (≤ 6 months) were asked to fill in the Dutch IH-specific QoL-questionnaire (D-IH-QoL) within 1 month after their first visit to our tertiary referral center. Hemangioma Severity Scale (HSS) score and Hemangioma Activity Score (HAS) were assessed. RESULTS: D-IH-QoL-scores were low; mean: 22.6 (range 1-56; max 116). Mean HSS score and HAS score were 8.4 (range 2-28) and 4.0 (range 1.5-6), respectively. Higher HSS scores correlated with worse QoL (ρ = .358; P = .005). HAS scores did not correlate with QoL scores. CONCLUSION: An IH only seems to have limited influence on QoL in young children and their parents in the first month of their first doctor's visit. QoL is more affected in more severe IH. Physicians should be alert to the impact of IH, optionally guided by the HSS score.

Propranolol treatment of infantile hemangioma is not associated with psychological problems at 7 years of age.

BACKGROUND: Concern has been raised about the potential long-term effects of propranolol treatment for infantile hemangioma (IH). OBJECTIVES: We sought to assess psychologic (social, emotional, behavioral, and executive) functioning in children treated with propranolol for IH. METHODS: Twenty-seven patients with IH (6.1-7.6 years of age) treated with propranolol for ≥6 months during infancy, and without other developmental risk factors, were recruited. Parents completed the Behavior Rating Inventory of Executive Function, Social Emotional Questionnaire, Child Behavior Checklist, and Strengths and Difficulties Questionnaire. For each questionnaire, the number of patients with abnormal scores, based on established cutoff points, was calculated. RESULTS: Only 1 child (3.7%) scored outside the normal range. The Hemangioma Severity Scale did not correlate with psychologic problems in these patients. Longer treatment duration was found to correlate with less attention-deficit hyperactivity disorder (ADHD) characteristics (ρ = -0.476; P = .012) and better executive functioning (ρ = -0.466; P = .014). LIMITATIONS: Exclusion of children born at gestational age <36 weeks or small for gestational age, no reference group and relatively small study size. CONCLUSION: We found no increased risk for psychologic problems at age 7 in IH patients treated with propranolol.

Propranolol treatment of infantile hemangioma (IH) is not associated with developmental risk or growth impairment at age 4 years.

BACKGROUND: Long-term adverse effects of propranolol treatment for infantile hemangioma (IH) in young children have been suggested. OBJECTIVE: To compare growth and development in children treated with propranolol for IH with nontreated healthy controls. METHODS: Eighty two (73%) children with IH aged 43 to 51 months treated with propranolol for 6 months or longer, and without other developmental risk factors, were recruited (cases) and matched with 4 twin counterparts and 78 children from a community-based cohort (control subjects). Parents completed the 48-months Ages and Stages Questionnaire (ASQ). Percentages of children with abnormal ASQ results were compared using χ(2) analyses. Mean ASQ scores and growth were compared using Mann-Whitney U tests. RESULTS: Six (7.3%) cases had abnormal ASQ results, compared with 10 (12.2%) controls (P = .292). Mean ASQ total score (25th-75th percentile) was 52.9 (50.8-57.0) for cases and 51.9 (49.0-56.0) for controls (P = .383). Height and weight of cases and controls were comparable. LIMITATIONS: A parent-completed screening instrument was used. The exclusion of children born at gestational age less than 36 weeks and/or children born small for gestational age partly limits generalizability. CONCLUSION: We found no increased developmental risk or growth impairment at age 4 years in patients with IH treated with propranolol.