Key points

Introduction

Skin disease is highly prevalent in the United States, and it has been well-documented that patients with skin disease experience financial, psychological, social, and quality-of-life (QoL) burdens beyond those of the general population. Pediatric patients and their parents are particularly vulnerable to the burden of skin disease. Children and adolescents are unique in that they undergo rapid, formative stages of physical, intellectual, emotional, and social development, and are particularly vulnerable to disruptions, such as chronic diseases. Recent research has focused on describing and measuring the QoL impact (physical, psychological, and social) on children and adolescents affected by skin disorders. For clinicians, an understanding of current research on the QoL burden of skin disease on pediatric patients helps to frame patient interactions and to guide interventions for affected children and their parents.

Chronic disease in childhood may negatively affect development and overall QoL. Pediatric patients with skin disease are more likely to experience depression, low self-esteem, lack of sleep, bullying, poor social interactions, poor medical compliance, and poorer health outcomes as adults. Furthermore, the burden of pediatric skin disease affects the family unit as a whole.

Various scales and indices have been developed to measure QoL in children and adolescents affected by skin disease. However, pediatric patients represent a unique challenge when measuring and describing QoL. Multidimensional factors, such as patient age, communication ability, caregiver status, and socioeconomic status, must be taken into account.

This article provides a framework by which clinicians may understand QoL issues in six common pediatric dermatologic conditions and includes a summary of applicable QoL indices by diagnosis. Box 1 represents common indices that have been used in pediatric dermatology, although others may be considered. We also suggest realistic strategies to translate this information into practical means to improve clinical practice and research.

Introduction

Skin disease is highly prevalent in the United States, and it has been well-documented that patients with skin disease experience financial, psychological, social, and quality-of-life (QoL) burdens beyond those of the general population. Pediatric patients and their parents are particularly vulnerable to the burden of skin disease. Children and adolescents are unique in that they undergo rapid, formative stages of physical, intellectual, emotional, and social development, and are particularly vulnerable to disruptions, such as chronic diseases. Recent research has focused on describing and measuring the QoL impact (physical, psychological, and social) on children and adolescents affected by skin disorders. For clinicians, an understanding of current research on the QoL burden of skin disease on pediatric patients helps to frame patient interactions and to guide interventions for affected children and their parents.

Chronic disease in childhood may negatively affect development and overall QoL. Pediatric patients with skin disease are more likely to experience depression, low self-esteem, lack of sleep, bullying, poor social interactions, poor medical compliance, and poorer health outcomes as adults. Furthermore, the burden of pediatric skin disease affects the family unit as a whole.

Various scales and indices have been developed to measure QoL in children and adolescents affected by skin disease. However, pediatric patients represent a unique challenge when measuring and describing QoL. Multidimensional factors, such as patient age, communication ability, caregiver status, and socioeconomic status, must be taken into account.

This article provides a framework by which clinicians may understand QoL issues in six common pediatric dermatologic conditions and includes a summary of applicable QoL indices by diagnosis. Box 1 represents common indices that have been used in pediatric dermatology, although others may be considered. We also suggest realistic strategies to translate this information into practical means to improve clinical practice and research.

QoL measurement in pediatric dermatology

Interest in QoL measurement in pediatric patients with skin disease has grown in recent years, and started with an increased recognition of the psychosocial burden experienced by young patients with disease and their families, and recognition of the importance of patient-focused care. In 1995, Lewis-Jones and Finlay developed the Children’s Dermatology Life Quality Index (CDLQI). This was the first tool designed to specifically assess the impact of skin disease on children as a parallel to the Dermatology Life Quality Index (DLQI), the first dermatology-specific QoL index designed for adults.

The concept of patient-focused care takes into account the patients’ (or caregivers’) perceptions, knowledge, and concerns into the medical treatment plan. It is meant to merge patient and caregiver education with evidence-based medicine to achieve optimal medical management for a particular individual. Benefits of patient-focused care include improved patient-clinician communication, better monitoring of treatment progress, increased patient compliance, superior physician performance, and greater patient satisfaction. QoL measurement may facilitate patient-focused care, be useful in measuring clinical research outcomes, and provide the patient and the physician with an additional objective means to assess treatment.

There are multiple indices validated to measure QoL in adults with skin disease. A few examples of adult QoL indices include the DLQI, Dermatology-Specific Quality of Life, Dermatology Quality of Life Scale, Skindex-29, and Skindex-16.

Currently, two QoL indices specific for pediatric dermatology exist: the CDLQI and Skindex-Teen. Other disease-specific indices used in pediatric dermatology to measure QoL are detailed later. Some of these tools measure parental response to disease as a proxy for their young children. The 10-item CDLQI has been validated and widely used, is available in many languages, and also has been expanded to include a young patient-accessible cartoon version. The CDLQI is designed for use in patients 5 to 16 years old. The score range is 0 to 30, with a higher score representing greater QoL impairment.

Skindex-Teen, developed by our group, is a validated 22-item questionnaire that focuses on QoL in adolescents (ages 12–17 years) with skin disease. It includes subscales pertaining to physical symptoms and psychosocial functioning. The initial validation study of this index found that, in general, adolescents with skin disease are most often bothered by physical symptoms (especially itching and pain), appearance and impact on clothing choices, and effects on self-esteem and self-image. The score range is 0 to 84, with a higher score representing a greater QoL impairment.

Although few studies have used CDLQI and Skindex-Teen to measure QoL in general pediatric dermatology practices, over the past decade many disease-specific indices for QoL measurement have been developed. Most of this research has focused on acne, atopic dermatitis (AD), hemangiomas, ichythosis, psoriasis, and vitiligo.

Acne vulgaris

Acne vulgaris is extremely prevalent in adolescents (ages 12–17 years): more than 90% of males and 80% of females experience this condition during their lifetime. QoL issues have been well-studied in acne vulgaris. Adolescence is a critical time of development of self-worth, and there is much emphasis on body image during this period. Coexistent morbidities in many adolescent patients with acne vulgaris include low self-esteem, social isolation, and depression and suicidal ideation. Of note, scarring related to acne vulgaris may lead to permanent physical morbidity, and decreased social functioning into adulthood.

Adolescents with acne vulgaris have poorer mental health scores than peers with asthma, epilepsy, diabetes, coronary artery disease, back pain, or arthritis. The Acne Disability Index (ADI), Cardiff Acne Disability Index (CADI), and the Acne-QoL index are validated indices for identifying and assessing adolescents with acne vulgaris who experience QoL impairment.

The ADI is a validated 48-item acne QoL questionnaire that addresses the following categories: psychological, physical, recreational, employment, self-awareness, social reaction, skin care, and financial. A score is calculated by the sum of each category score, the total of which is then converted into the final percent score. This index is found to be somewhat cumbersome for use in routine clinical care. Simpler, more rapidly used, modified indices have been developed as alternatives to the ADI, including the CADI and Acne QoL index. The CADI is modeled after the ADI but contains only five questions, with a score range 0 to 15. A higher score indicates increased QoL impairment. Benefits include simplicity of use, adequate gauging of patient self-perception of acne vulgaris, and that it requires only minutes to complete. The Acne QoL index is another validated 19-item questionnaire that addresses four categories: (1) self-perception, (2) role-emotional, (3) role-social, and (4) acne symptoms. The total score is the sum of category scores: a higher score indicates better QoL. The CADI or Acne QoL indices offer validated, succinct measures of QoL impact on patients with acne.

Psychosocial impairment in adolescents with acne vulgaris can be quite significant. Patients with more severe QoL impairment should raise consideration by the physician of more aggressive or systemic treatments. In some cases, referral for an evaluation by a mental health specialist may be warranted. Effective treatment successfully minimizes the QoL burden of this common disease.

Atopic dermatitis

AD affects up to 17% of children in the United States, most commonly infants and young children, and is characterized by recurrent, chronic flares of inflammation and pruritus. The psychological, financial, and social burdens of AD are substantial.

Parents report that their children with AD experience sleep disturbance, and are more clingy, frustrated, and irritable. Studies have found a correlation between AD and attention-deficit/hyperactivity disorder. Infants with AD are also found to be at greater risk for development of mental health problems by age 10 years.

The Infants’ Dermatitis Quality of Life Index (IDQOL) is a validated 10-item questionnaire designed for parents of children younger than age 4 years. It addresses difficulty with mood, sleep, play, family activities, mealtime, treatment, dressing and bathing, and parental perception of their child’s current dermatitis severity. Increased impairment is associated with higher score. Scores range from 0 to 30, with 30 being the maximum. A higher score represents greater QoL impairment.

The Childhood Atopic Dermatitis Development Impact Scale (CADIS) is a validated tool for children younger than 6 years of age. It includes 45 items in the following four subscale categories: (1) physical health, (2) emotional health, (3) physical functioning, and (4) social functioning. Both parent and child are evaluated in each of the four subscales. The score range is 0 to 180, with a higher score reflecting greater QoL impairment.

Other QoL assessment indices, including the Quality of Life in Primary Caregivers of Children with Atopic Dermatitis, Parents’ Index of Quality of Life in Atopic Dermatitis, and the Dermatitis Family Impact Questionnaire (DFI), focus on qualifying the burden of AD on the family unit. These indices are useful because they may allow for greater clinical education focused on reducing the burden of AD on the family as a whole, or for support group referral (eg, the National Eczema Foundation).

The prevalence and burden of AD in teenagers is less well understood. Adolescents with AD are at significant risk of impaired QoL similar to that of acne vulgaris, including predisposition to depression, impaired social interaction with members of the opposite sex, and sexual functioning. Using Skindex-Teen, adolescents with AD generally experienced similar impairment in QoL as those with acne.

Indices to accurately measure QoL in pediatric patients with AD are highly relevant to clinical practice and research. To more completely gauge the comprehensive burden of disease, the clinician should aim to objectively review QoL and physical impairment.

Patients with severe QoL impairment caused by AD may be in greater need of aggressive treatment strategies to minimize comorbidities and the long-term psychosocial effects of their disease. It is critical to involve both the caregiver and patient in these treatment strategies.

Infantile hemangiomas

Infantile hemangiomas are found in 1% to 3% of all neonates and 10% of children within the first year of life. They are a benign, yet often disfiguring or function-threatening, vascular tumor that most commonly arises in a visible region, such as the head or neck. They usually increase in size during the first year of life and most regress or involute by school age. Of note, large facial hemangiomas and other large segmental hemangiomas can be associated with systemic findings (ie, PHACE syndrome, PELVIS syndrome, airway lesions), which may add to the emotional burden for the family.

Narrative data on QoL of children and caregivers of children with infantile hemangiomas is extensive. Patients and caregivers routinely experience social stigmatization, grief, guilt, sadness, and anxiety. Caregivers have been noted to undergo a predictable five-stage sequence of shock, denial, sadness, anger, and gradual acceptance of their child’s condition. Children, in particular, may experience decreased self-esteem and significantly reduced psychosocial functioning. Caregivers are at additional risk of extreme distress because of unwarranted accusations of child abuse.

Hoornweg and colleagues have designed a hemangioma-specific QoL questionnaire known as the TNO-AZL Quality of Life Questionnaire (TNO-AZL). These acronyms are abbreviated titles for the Netherlands Organization for Applied Scientific Research (TNO) and the Dutch hospital where the questionnaire was developed (AZL). The preschool version (TAPQoL) is designed for children age 6 months to 6 years, whereas the child form (TACQoL-CF) is for ages 6 to 15 years. In their study of 236 children with hemangiomas, affected children had comparable or better QoL scores than age-matched healthy children in all domains except anxiety. There was no significant difference in scores based on lesion location or presence of complicated associated medical course. Domains where children with hemangioma had slightly better QoL than healthy children included physical symptoms, motor function, cognitive, and emotions. However, when mothers were surveyed with the TAPQoL and TACQoL-CF, they reported that their children (especially those with complicated hemangiomas) experienced more negative emotions than healthy children. The score range of both TNO-AZL forms (TAPQoL and TACQoL-CF) is 0 to 100. A higher score reflects better QoL.

This study warrants further investigation because there is a discrepancy in the extensive narrative data indicating impaired QoL and the findings of this study, which describe QoL equal or better than that of the age-matched healthy children. This may reflect a paradox in that children with hemangiomas typically receive increased parental and healthcare support, which may encourage a higher level of self-esteem and functioning. Additionally, the findings in this study represent a population limited to Dutch patients in Amsterdam and may be caused by increased education and support through participation in the study.

The Mental Health Inventory has been used to collect data on parents of children with hemangiomas. When the Mental Health Inventory was used to study parental distress with infantile hemangiomas in a study involving six married couples, it was found that medical complications of the hemangioma were significantly associated with distress. Parental perception of surface area or visibility of the hemangioma was not significantly correlated with distress. Current descriptive data and generic outcome scales support a notable psychosocial burden on families of infants with hemangiomas and further work is needed to specifically measure this outcome.

Parents and caregivers of children with infantile hemangiomas often require extensive education on the natural history and clinical outcomes and may benefit from support group referral and counseling. QoL measurement may aid in identifying the needs of individual patients and their families for these services. Bibliotherapy (a means of exploring feelings and experiences through fiction) has been cited as a method to reduce feelings of social isolation in children and caregivers. Additional modes of intervention, such as interactive music therapy, may be considered.

Support groups are useful resources for affected families because they provide easily accessible advice and information on advocacy, daily activities, and information on financial resources ( Table 1 ). Additionally, clinician educators are excellent resources for children and caregivers of children with hemangiomas.

Table 1

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