Psoriasis: is it the tip of the iceberg for the quality of life of patients and their families?

Objective To evaluate the impact of psoriasis on patients’ and their relatives’ quality of life (QoL). Methods Eighty patients with their accompanying family members were included in the study. For measuring health related QoL (HRQoL) of patients with psoriasis, two questionnaires were used: Short Form 36 Health Survey (SF‐36) and EuroQol (EQ‐5D). Disease‐specific HRQoL was assessed by the Dermatology Life Quality Index. For measuring the quality of life of patients’ relatives, a specific questionnaire for dermatological diseases was used (Family Dermatology Life Quality Index, FDLQI). Results Of our patients, 88.3% reported that their disease affects in many and different ways their QoL whereas only 11.2% reported that psoriasis does not influence at all their life. Regarding FDLQI, 90% of the participating family members, responded that their relative’s psoriasis affected their own QoL. Conclusions Psoriasis is a chronic disease that affects in a cumulative way the quality of life of both patients and their close relatives.     

The influence of treatments in daily clinical practice on the Children's Dermatology Life Quality Index in juvenile psoriasis: a longitudinal study from the Child-CAPTURE patient registry

Background Juvenile psoriasis has a negative effect on the quality of life (QoL). The influence of treatments on QoL of these children has never been investigated before in a prospective observational study. Objectives To assess the Children’s Dermatology Life Quality Index (CDLQI) in a cohort of patients with juvenile psoriasis and to evaluate the influence of treatments in daily clinical practice on CDLQI. Methods We conducted a prospective observational study of children with psoriasis from a registry containing daily clinical practice data. Before and after treatment, QoL was assessed by the CDLQI and disease severity was documented by the Psoriasis Area and Severity Index (PASI). Three clusters of treatments were analysed: topical, dithranol and systemic therapy. Results In total, 125 patients were enrolled in the registry. Cross‐sectionally, a mean ± SD CDLQI score of 7·5 ± 5·0 and a mean ± SD PASI of 7·0 ± 5·8 were recorded. Itching and problems with treatment had the highest impact on the children’s QoL. Longitudinally, 85 patients were analysed with a total of 137 treatment episodes. All treatments contributed to a significant decline in total CDLQI score, with the largest decrease seen in dithranol and systemic treatments. A significant correlation was found between ΔCDLQI and ΔPASI for all treatment modalities. The highest positive impact of treatments was found in a decline of itch and sleep disturbance. Conclusions In this first prospective observational study on CDLQI in juvenile psoriasis, a positive influence of treatments in daily clinical practice on QoL was demonstrated.     

Psychiatric symptoms and health-related quality of life in children and adolescents with psoriasis

Information about the relationship between psoriasis and psychiatric morbidity and quality of life in children and adolescents is limited. We aimed to examine the symptoms of depression and anxiety and health-related quality of life levels in children and adolescents with psoriasis. Forty-eight outpatients with psoriasis aged 8 to 18 years are included in this study. Child Depression Inventory (CDI), State-Trait Anxiety Inventories for Children (STAI-C) and Pediatric Quality of Life Inventory Parent and Child Versions (PedQL-P and C) were applied to both patient and control groups. Psoriasis symptom severity was measured by the Psoriasis Area Severity Index (PASI). Both study and control groups were divided into two age groups, child (8-12 yrs) and adolescent (13-18 yrs), to exclude the effect of puberty on psychological condition. The mean CDI score was higher, and PedQL-C psychosocial and total scores were lower in the children compared with controls. Duration of psoriasis had an increasing effect on physical-health and total scores of PedQL-C in the child group and all PedQL-C scores in the entire sample. Psoriasis severity showed a negative correlation with psychosocial and total scores of PedQL-P in the adolescent group and PedQL-P physical-health scores in the entire sample. Psoriasis is related to depression and impaired quality of life in children. The depressive symptoms in children with psoriasis should not be overlooked and psychiatric assessment of these children should be provided.     

A cross‐sectional study using the Children’s Dermatology Life Quality Index (CDLQI) in childhood psoriasis: negative effect on quality of life and moderate correlation of CDLQI with severity scores

Background Juvenile psoriasis is a chronic and incurable skin disease that affects approximately 0·7% of children. Objectives To achieve more insight into the quality of life (QoL) in childhood psoriasis and to investigate whether disease severity scores correlate with QoL scores. Methods All consecutive patients with juvenile plaque psoriasis (≤ 18 years old) who visited our outpatient department were included. At baseline, the Children’s Dermatology Life Quality Index (CDLQI) questionnaire was completed and disease severity was assessed by the Psoriasis Area and Severity Index (PASI) and the Physician Global Assessment (PGA). Results Thirty‐nine patients were included in the study. A median CDLQI of 6 [interquartile range (IQR) 5–9] was reported. Median PASI was 6·3 (IQR 3·3–8·2) and median PGA was 2 (IQR 1–3). The correlation coefficient between PASI and CDLQI was 0·47 (P = 0·003), whereas the correlation coefficient between PGA and CDLQI was 0·51 (P = 0·001). Conclusions The negative effect on QoL in juvenile psoriasis was confirmed in the largest cohort presented up to now. The correlation between disease severity scores and disease‐related QoL in children with psoriasis is only moderate. Therefore, both clinical outcome parameters (PASI, PGA) and measures of QoL (CDLQI) should be included in adequate, patient‐oriented clinical decision making.     

Quality of life and clinical features in Swedish children with psoriasis

Psoriasis is a common, chronic disease and in one-third of the patients it begins during the first 2 decades of life. The burdens of psoriasis are many, and some can be assessed with quality of life questionnaires. The aim was to investigate the impact of childhood psoriasis on quality of life in children and their parents and to correlate certain clinical findings with quality of life. Forty-five Swedish children (4-16 years, 28 girls) with psoriasis, and their parents, were investigated with the validated questionnaires Children's Dermatology Life Quality Index (5-16 years, n = 42), The Infant's Dermatitis Quality of Life Index (4 years, n = 3), and Dermatitis Family Impact (n = 45), the two latter with the word eczema replaced by psoriasis. Clinical examination was performed, and psoriasis severity was scored with Psoriasis Area and Severity Index. Chronic plaque psoriasis was the most common clinical type (87%). Four of the children had joint complaints. Ninety-three percent had pruritus the preceding 3 days. Ninety-three percent were receiving treatment. Median Psoriasis Area and Severity Index score was 3.3 (range 0.5-12.3). Median score for the Infant's Dermatitis Quality of Life Index was 4.0 (range 2-12), for Children's Dermatology Life Quality Index 4.0 (0-24), and for Dermatitis Family Impact questionnaire 4.0 (0-25). No significant gender difference existed. The Children's Dermatology Life Quality Index scores were higher for younger (5-8 yrs) than older (9-16 yrs) children and higher for those with joint complaints. The Dermatitis family impact scores correlated significantly with Children's Dermatology Life Quality Index and Psoriasis Area and Severity Index scores, but the Children's Dermatology Life Quality Index did not correlate with Psoriasis Area and Severity Index. The Visual Analog Scale and quality of life scores were significantly correlated. Psoriasis in children affects quality of life in the subjects and their parents. Joint complaints and pruritus significantly impair quality of life.     

基于萨提亚模式的医疗情景游戏对住院银屑病患儿及家属生活质量和遵医行为的影响

目的：评价基于萨提亚模式的医疗情景游戏对银屑病患儿及家属生活质量、负性情绪、遵医行为的作用。方法：选取我院过敏与风湿免疫科病区2019年3~7月入院患儿为对照组,2019年8月至2020年1月入院患儿为干预组。对照组接受病房常规诊疗活动及健康教育,干预组由3名接受过统一培训的护师实施基于萨提亚模式的医疗情景游戏。干预前、出院时和出院后1个月检测COLQI评分、FDLQI评分、家长疾病管理能力评分和家长积极感受评分。结果：对照组34 例,干预组35 例。出院时干预组患儿COLQI评分低于对照组患儿,出院时和出院后1个月干预组FDLQI评分低于对照组,干预组积极感受评分、疾病管理能力评分高于对照组,差异有统计学意义（P＜0.05）。结论：基于萨提亚模式的医疗情景游戏可改善银屑病患儿及其家长生活质量、遵医行为,可提高家长积极感受和疾病管理能力。     

Quality of life in mothers of children with psoriasis

Background

Patients' and their mothers' quality of life is severely affected by childhood psoriasis. Almost all children have a chronic illness that lasts until adulthood, which puts them at risk for lifelong difficulties like stigma, psychiatric comorbidity, and suicide.

Objective

Evaluation of the effects of childhood psoriasis on the mothers' quality of life was the project's primary objective.

Subjects and Methods

100 mothers of children with various kinds of psoriasis participated in the study. The Family Dermatology Life Quality Index (FDLQI) was used to evaluate the mothers' quality of life.

Results

The mother's FDLQI score was between 3 and 25, with a mean of 13. In terms of how the FDLQI was interpreted, 8 moms had an incredibly enormous impact, 63 mothers had a very significant impact, 26 mothers had a moderate impact, and 3 mothers had a modest impact. We discovered a substantial direct link between the mother's FDLQI and the children's PASI scores. Furthermore, we discovered that scalp and pustular psoriasis had the highest FDLQI scores, indicating a poor quality of life.

Conclusion

Both the quality of life for affected children and their cares may be negatively impacted by childhood psoriasis. Age of the children, PASI score, and kind of psoriasis can all have an impact on how psoriasis in childhood affects the mother.     

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology‐specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents’ Index QoL Atopic Dermatitis, PiQoL‐AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB‐BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.     

Age, gender, quality of life and psychological distress in patients hospitalized with psoriasis

BACKGROUND: Psoriasis has a great impact on the quality of life of patients, and the ageing population is an important public health issue. OBJECTIVES: To investigate whether older patients with psoriasis have a different impairment in quality of life compared with younger patients, considering level of severity, duration of disease, gender and psychological distress. METHODS: The study was performed between February 2000 and February 2002 at the inpatient wards of the Dermatological Institute IDI-IRCCS, Rome, Italy, in the framework of a large project on clinical, epidemiological, emotional and quality of life aspects of psoriasis (IMPROVE study). This is a hospital-based cross-sectional study, with measures of quality of life (Skindex-29, Dermatology Life Quality Index and Psoriasis Disability Index) and of psychological distress, generic (12-item General Health Questionnaire) and psoriasis-related (Psoriasis Life Stress Inventory), all self-assessed by patients. We compared the mean scores of each quality of life instrument in patients aged < 65 years and >/= 65 years, in subsets of patients based on clinical and sociodemographic characteristics. RESULTS: We analysed 936 patients hospitalized at IDI-IRCCS with a diagnosis of psoriasis. Quality of life was significantly more impaired in the older group for all the Skindex-29 scales, and psychological distress was higher in older patients. In particular, older women suffering from anxiety or depression had the greatest impairment in quality of life. The results were somewhat different using the other quality of life instruments. CONCLUSIONS: These results should alert dermatologists that similar levels of clinical severity in psoriasis may be associated with different levels of quality of life and psychological distress of patients. Particular attention should be devoted to older patients, and especially to older women.     

The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease

BACKGROUND: Skin diseases are known to have a major impact on the lives of patients and their families. Many instruments are available to measure the health-related quality of life (HRQoL) of patients but no measure has been developed so far to quantify the secondary impact on family members of the patients. OBJECTIVES: To develop and validate a dermatology-specific instrument to measure the adverse impact on the HRQoL of family members of patients with skin disease. METHODS: Detailed semi-structured interviews were conducted with family members of patients to identify different aspects of HRQoL affected. An initial draft version of the questionnaire based on the main topic areas was pilot tested to assess the face and content validity. A 10-item questionnaire, the Family Dermatology Life Quality Index (FDLQI), was finalized after modifications to the draft questionnaire based on feedback from families and dermatology professionals and on item reduction. Psychometric evaluation was conducted on a new cohort of family members (n = 132) who completed the FDLQI and the patients (n = 109) who completed the Dermatology Life Quality Index (DLQI). RESULTS: Fifty-nine different aspects of family members' HRQoL were identified from the analysis of the interviews, which were categorized into main topic areas. Factor analysis of 10 items of the final questionnaire revealed two factors and together these explained 60% of the common variance. The FDLQI demonstrated high internal consistency (Cronbach's alpha = 0.88) and test-retest (intraclass correlation coefficient = 0.94) reliabilities. The responsiveness of the instrument to change was shown by significant change in the family members' FDLQI scores in cases where patients' clinical condition either improved or worsened. Construct validity was assessed by testing a number of a priori hypotheses. A strong correlation was seen between the family members' FDLQI scores and patients' DLQI scores (r = 0.69), a significantly higher FDLQI score was seen for inflammatory skin diseases compared with noninflammatory diseases/isolated lesions (P < 0.0001), and there was a positive relationship between the family members' FDLQI scores and patients' disease severity (r = 0.49). CONCLUSIONS: The FDLQI is simple and practical and seems to have the potential to be used as an additional outcome measure in clinical practice and evaluation research.     

Randomized controlled trial of a single dermatology nurse consultation in primary care on the quality of life of children with atopic eczema

BACKGROUND: Atopic eczema is mostly managed in primary care but there is often insufficient time for patient education; a nurse practitioner could help with this. OBJECTIVES: To evaluate the effects of a single consultation with a primary care nurse on the quality of life (QOL) of children with atopic eczema aged 0.5-16 years and the impact of the disease on their families. PATIENTS AND METHODS: Children with eczema were invited to join the trial. Volunteers were randomized to a control group or an intervention group who attended the nurse for a single 30-min session. Family impact was determined using the Family Dermatitis Index (FDI), and QOL was assessed using the Infant Dermatitis Quality of Life questionnaire (IDQOL) or, in children aged 4-16 years, the Children's Dermatology Life Quality Index (CDLQI). Baseline scores for family impact and QOL were compared with those at 4 weeks and 12 weeks post-intervention. RESULTS: Two hundred and thirty-five children were recruited over 12 months; 115 were aged 0.5-4 years and 120 were aged 4-16 years. Follow-up data were missing for 38 children (84% completion rate, n = 197). All measures of QOL or family impact at baseline were skewed. The median scores were IDQOL, 5, and CDLQI, 6. About 20% of children had zero scores for the FDI (no impact on family life); median FDI scores were 2 or 3. At baseline the FDI correlated with the IDQOL or CDLQI. In addition, the FDI and IDQOL were related to parental assessment of disease severity. Non-responders had, on average, worse QOL at baseline than those who provided complete data. In the children with complete data, the mean differences in CD < Q1 and 1DQO< scores between intervention and control children were small at 4 and 12 weeks (P > 0.05). The improvement in FDI at 4 weeks was slightly better in intervention than control children (P < 0.06). CONCLUSIONS: The impact on QOL of a single intervention by a dermatology nurse was marginal for family impact at 4 weeks and was not apparent for other measures, either in the short or longer term. The planned sample size was derived from data in hospital patients but in our population disease activity was milder and the effects on QOL were less. On this account the present study was of low statistical power for some measures. Further studies in larger populations using additional outcome measures are required before advocating the wider introduction of nurse specialists.     

Quality of life assessment and disease experience of patient members of a web-based hydroa vacciniforme support group

Background/Purpose: Hydroa vacciniforme (HV) is a rare photodermatosis that primarily affects children. It is characterized by photodistributed vesicles that heal with scarring. The purposes of this study are to perform the initial investigation into the effect of HV on quality of life (QoL) and gain insight into disease diagnosis and management.
Methods: Using the listserv from a web-based, international HV support group, either the Dermatology Life Quality Index (DLQI) or the Children's DLQI (CDLQI), and an HV-specific questionnaire were administered.
Results: Fifteen HV patients participated, nine (60%) males and six (40%) females. Median age at onset was 7 years, and 11/15 (73%) were younger than 18 years. The majority of patients were Caucasian (73%). Children cited life quality as being negatively impacted by an inability to play outdoors while adults noted QoL influences due to limitations on clothing choices. The mean CLDLQI and DLQI scores, 12.1 and 8.5, respectively, suggest a higher negative QoL impact than previously reported indices for generalized eczema, atopic dermatitis, and psoriasis.
Conclusion: When compared with other dermatoses, HV appears to have an equal or greater impact on patients' QoL. Dermatologists should be aware of the psychosociologic impact of this disease, especially on young HV patients.     

72例银屑病患者生活质量调查及影响因素研究

目的：探讨银屑病对患者生活质量的影响状况及对生活质量主要影响因素的分析。方法：采用皮肤病生活质量指数（dermatology life quality index,DLQI）和银屑病无能指数（psoriasis disability index,PDI）量表调查72例银屑病患者,记录患者的一般情况;同时采用银屑病面积和严重程度指数（psoriasis area and severity index,PASI）评分评判患者病情的严重程度,采用方差分析比较不同病情严重程度患者间生活质量的差异。结果：DLQI与PDI调查结果均显示银屑病患者在工作学习方面的分值（DLQI：1．69±1．31,PDI：2．92±2．61）最高,受到影响最大;PDI量表显示男性患者总分平均值高于女性患者,差异有统计学意义（t=2．73,P〈0．05）,DLQI与PDI量表均显示重度（PASI〉10）患者的总分平均值高于轻度（0〈PASI≤5）患者,差异有统计学意义（DLOQ：t=0．72;PDI：t=1．45,P值均〈0．05）。结论：银屑病为一种身心性疾病,患者在工作学习方面受到的影响较明显;与患者生活质量最为相关的是病情的严重程度,病情严重程度越高的患者生活质量受到的影响越大。     

Measures of clinical severity, quality of life, and psychological distress in patients with psoriasis: a cluster analysis

The impact of psoriasis on patients' quality of life may be quite destructive, and measures of disease status alone seem to have questionable validity in describing the true burden of illness. Our aim was to study, in patients with psoriasis, the relationship between classical measures of clinical status (i.e., PASI and SAPASI) and quality-of-life indexes (i.e., Skindex-29, Dermatology Life Quality Index, Psoriasis Disability Index, Impact of Psoriasis Questionnaire). In addition, two psychological distress indexes (i.e., Psoriasis Life Stress Inventory, 12-item General Health Questionnaire) were assessed. Data were collected between February 2000 and July 2001 at the inpatient wards of the Dermatological Institute IDI-IRCCS, Rome, Italy, in the framework of a large project on clinical, epidemiologic, emotional, and quality-of-life aspects of psoriasis. A cluster analysis of all the above-mentioned instruments was conducted on 786 eligible patients hospitalized with a diagnosis of psoriasis. Correlations between instruments were also analyzed in subsets of patients based on the main variables of interest. The instruments clustered in two distinct groups, one formed by clinical severity measurements and the other grouping all the quality-of-life and psychological indexes. The correlations between instruments observed in the subgroups determined by different sociodemographic and clinical variables showed the same pattern. In conclusion, the dissimilarity between clinical severity assessment and patient-centered measures stresses the need for a more comprehensive assessment of severity of psoriasis.     

A comparative study of the impairment of quality of life in Czech children with atopic dermatitis of different age groups and their families

Background Atopic dermatitis (AD) still remains one of the most common childhood inflammatory skin diseases. As a chronic disease, it can have a physical and psychological effect on social functioning of the affected child as well as their family. The objective of this study was to evaluate the quality of life of children with AD of different age groups and their families. Methods A total of 203 children with a diagnosis of AD from newborn to 18 years of age and 202 of their parents took part in our study (as one parent did not return the questionnaire). All participants, according to their age, completed the following questionnaires: Infants’ Dermatitis Quality of Life Index (IDQOL); Children’s Dermatology Life Quality Index (CDLQI) – text and cartoon version; and Dermatitis Family Impact questionnaire (DFI). Results The mean total IDQOL score in our study was 8.18 (SD = 5.84, n = 120). The mean total CDLQI scores in the groups of children from 7 to 13 and from 14 to 18 years were 8.58 (SD = 4.98, n = 48) and 9.89 (SD = 5.26, n = 35). There was also a proven influence of the child’s AD on the quality of life of his parents with the mean score: 7.98 (SD = 6.41, n = 202). Conclusions The study demonstrated and confirmed that AD significantly impairs the children’s quality of life in all age groups and also quality of life of their families. Such data give us patient‐oriented information that is of great importance for understanding the situation of individuals with AD and its influence on members of their family.     

Measuring quality of life of patients with different clinical types of psoriasis using the SF-36

BACKGROUND: Different specific and generic instruments are used to evaluate quality of life in dermatology, but their interrelationship is not well known. OBJECTIVES: To describe the quality of life in patients with different clinical types of psoriasis using the 36-item short form of the Medical Outcomes Study questionnaire (SF-36), and to study its correlation with dermatology-specific instruments. METHODS: We conducted a cross-sectional study of 380 inpatients with psoriasis. SF-36 mean scores were compared with the norms for medical and psychiatric disorders. Quality of life was also measured by both dermatology-specific (Skindex-29 and Dermatology Life Quality Index, DLQI) and psoriasis-specific instruments (Psoriasis Disability Index, PDI, and the Impact of Psoriasis Questionnaire, IPSO). A specific (Psoriasis Life Stress Inventory, PLSI) and a generic (12-item General Health Questionnaire, GHQ-12) measure of psychological distress was also used. A cluster analysis was performed to study the relationship among the different questionnaires. RESULTS: Our study population showed SF-36 physical health scores similar to minor medical conditions (e.g. physical functioning 79 for psoriasis, 80 for minor medical conditions, and 57 for severe medical conditions), but mental health scores quite similar to psychiatric illnesses (e.g. mental health 57 for psoriasis, 81 for minor medical conditions, 79 for severe medical conditions, and 53 for psychiatric conditions). The SF-36 showed two distinct patterns of impairment of quality of life, with a greater burden of disease for palmoplantar, pustular and arthropathic psoriasis. SF-36 scales tended to form separate clusters from the other dermatology-specific quality of life instruments. CONCLUSIONS: A generic quality of life instrument (e.g. the SF-36) provides information that is complementary to that derived from dermatological questionnaires, and may give further insight in the evaluation of the burden of psoriasis.     

Quality of life in epidermolysis bullosa

The quality of life of people with epidermolysis bullosa (EB) living in Scotland was assessed by postal questionnaire using the Dermatology Life Quality Index (DLQI) and the Children's Dermatology Life Quality Index (CDLQI). There were 143 people with EB simplex (EBS) and 99 individuals with non-Hallopeau--Siemens subtypes of dystrophic EB (DEB). A further six individuals had the severe Hallopeau--Siemens subtype of DEB (RDEB-HS). The overall response was 48% (EBS 52%, DEB 40% and RDEB-HS 83%). Impairment of quality of life (QOL) was greatest in those with RDEB-HS, mean scores (adults, 18; children, 22) exceeding those of any skin disorder previously assessed. The effect on QOL of EBS and other subtypes of DEB was similar to that of moderately severe psoriasis and eczema. EBS had a greater impact on QOL than the non-Hallopeau--Siemens subtypes of DEB (EBS adults mean score, 10.7; EBS children mean score, 15; DEB adults mean score, 7.5; DEB children mean score, 11.5).     

Current severe psoriasis and the rule of tens

This review addresses the problems of defining severity of psoriasis. Concepts of severity depend on the timescale perspective from which judgement is made. Measurement needs to include assessment of signs, impact on the patient's life and the history of the disease. The concept of severity in relationship to quality of life measurement scores has been defined, so it is now possible to postulate a standard, easily remembered concept to help define 'severe psoriasis' in the clinic. The proposed Rule of Tens for current severe psoriasis from the clinician's viewpoint is: 'Current Severe Psoriasis = Body Surface Area involved > 10% or Psoriasis Area and Severity Index score > 10 or Dermatology Life Quality Index score > 10'.     

Disease‐related behavioral patterns and experiences affect quality of life in children and adolescents with vitiligo

Background Vitiligo is an acquired, non‐contagious depigmentation disorder involving a patchy loss of skin color. It often leads to stigmatization, embarrassment, and reduced quality of life (QoL) in adult patients. Little is known about children’s reactions. Objectives This study aimed to explore disease‐related QoL and experiences in a multinational group of children and adolescents. Methods Quality of life, disease‐related experiences and behavior, and sociodemographic data were examined in 24 boys and 50 girls (age range: 7–17 years) using the Children’s Dermatology Life Quality Index (CDLQI) and additional questions. Eighteen children without skin disorders served as age‐, sex‐ and skin color‐matched controls. Results The mean disease duration was 3.5 years. The most common sites of onset were the trunk, legs, and head and neck. Overall, 35.1% of the 74 subjects reported a positive family history, 91.9% had visited a doctor, and 75.7% had received treatment. Two‐thirds (66.2%) were distressed by their vitiligo, and 93.2% had experienced low‐key stigmatization, 44.6% nasty comments, and 21.7% bullying. A total of 24.4% had concealed their disease, and 29.7% had avoided situations because of vitiligo. Frequency of stigmatization influenced avoidant behavior. Parents, particularly mothers, and friends were important sources of support. Patients and controls had similar numbers of friends and leisure time activities. The mean CDLQI score of the group was low (2.8). Higher CDLQI scores were related to stigmatization, hiding of white spots, facial depigmentation, avoidance of situations, and a vitiligo‐negative family history. Conclusions Disease‐related stigmatization, negative experiences, and avoidant behavior affect QoL. Therefore, the CDLQI should be combined with other instruments to screen for disease burden. These results call for the careful evaluation of young patients with vitiligo.     

Dermatology life quality index scores in children with vitiligo: comparison with atopic dermatitis and healthy control subjects

Vitiligo and atopic dermatitis (AD) are two major cutaneous diseases that affect quality of life (QoL) by causing functional and psychosocial disorders. Our objective was to calculate Children’s Dermatology Life Quality Index (CDLQI) scores in children with vitiligo and to compare these values with those in AD patients and healthy control subjects. The CDLQI was completed for 50 vitiligo and 50 AD patients presenting at the dermatology polyclinic, as well as for 50 age‐ and sex‐matched healthy controls. All subgroups in the vitiligo patient group had significantly higher total CDLQI scores than healthy controls. Vitiligo patients were found to have increased scores on all parameters, except itch, clothes/shoes, and sleep, compared with the AD patient group. Scores on itch and sleep were significantly higher in the AD group than in the vitiligo patients. Quality of life in children with vitiligo is substantially lower than in children with AD. This decline in QoL is critical in the psychosocial development of the former group.