Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study

Putterman, Elana; Patel, Deepa; Andrade, Gabriela; Harfmann, Katya; Hogeling, Marcia; Cheng, Carol E.; Goh, Carolyn; Rogers, Rachel; Castelo‐Soccio, Leslie

doi:10.1016/j.jaad.2018.12.051

Cited by 40 publications

(54 citation statements)

References 14 publications

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“…In this study, we describe and evaluate QoL in parents of patients with vitiligo. FDLQI scores (12.3-15.8, Table 2) were lower than those reported in parents of children with atopic dermatitis (13.6-17), but higher than the range of scores reported in psoriasis (8.8) and alopecia areata patients (6.5) [6,[13][14][15]. On average, QLCCDQ emotional domain scores (5.1) were slightly higher than those reported in parents of children with stable, chronic medical disease (4.5) such as type 1 diabetes and asthma [11].…”

Section: Discussionmentioning

confidence: 67%

“…Patient age did not correlate with QLCCDQ per-item scores, but there was a slight correlation between patient age and FLDQI overall scores (r = − 0.19, p = 0.036, Table 3). A relationship between patient age and parental scores has been previously described in a study done on the QoL in parents of children with alopecia areata [15]. The alopecia areata study suggests that overall parental QoL may decrease as children age through a slight negative correlation between QQLCDQ per-item scores, but not FLDQI overall scores.…”

Section: Discussionmentioning

confidence: 75%

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Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers

Andrade

Rangu

Provini

et al. 2020

J Patient Rep Outcomes

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Background/objectives: Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focused on caregivers of children with vitiligo. To address this, we determined the QoL impact in parents of children with vitiligo to assess the relationship between QoL parameters and disease duration, location, and severity. Methods: We performed a cross-sectional study involving 123 parents of children diagnosed with vitiligo for at least 3 months, and who presented to the pediatric dermatology clinic of a major United States children's hospital. Parents completed a demographics survey, Quality of Life in a Child's Chronic Disease Questionnaire (QLCCDQ) and Family Dermatology Life Quality Index (FDLQI) to assess QoL measures. The lower the QLCCDQ score and higher the FLDQI score, the more quality of life is impaired. Results: Subject age ranged from 20 to 57, and 13.9% received mental health intervention. QLCCDQ emotional domain scores were most impaired, and severity and location of disease impacted these scores. FDLQI scores decreased as children age, indicating overall parent wellbeing increased as children age. Conclusions: Childhood vitiligo has great emotional impact on the quality of life of caregivers. Recognizing this will enable dermatologist who primarily care for these patients to incorporate care giver specific interventions during clinical visits. Emotional domain scores for parents of children with vitiligo were the most impaired as much or more than of those seen in parents of children with chronic stable medical disease such as type 1 diabetes and asthma.

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Section: Discussionmentioning

confidence: 67%

Section: Discussionmentioning

confidence: 75%

Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers

Andrade

Rangu

Provini

et al. 2020

J Patient Rep Outcomes

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“…The impact of AA on patients' health-related quality of life (HRQoL) has been explored in several quantitative studies that have identified low HRQoL in adults [7][8][9][10][11][12][13], in children [14,15], and in family members (of those affected by AA) [8,15,16], with particularly significant impairment in emotional functioning and mental health [17]. These studies involved quantitative collection of patient-reported data and did not seek to qualitatively conceptualize patients' disease experience.…”

Section: Introductionmentioning

confidence: 99%

“‘You lose your hair, what’s the big deal?’ I was so embarrassed, I was so self-conscious, I was so depressed:” a qualitative interview study to understand the psychosocial burden of alopecia areata

Aldhouse¹,

Kitchen²,

Knight³

et al. 2020

J Patient Rep Outcomes

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Background Alopecia areata (AA) is characterized by hair loss that can affect the scalp and body. This study describes the psychosocial burden of AA. Methods Participants diagnosed with AA who had experienced ≥50% scalp hair loss according to the Severity of Alopecia Tool (SALT) were identified by clinicians. A semi-structured interview guide, developed with expert clinician input, included open-ended questions to explore patients’ experiences of living with AA. Data were thematically analyzed to identify concepts and relationships. Results Participants (n = 45, 58% female, mean age 33.3 years [range 15–72], mean SALT 67.2 [range 0–100]) described the AA diagnosis as “devastating”. Both males and females reported emotional and psychological impacts of AA including feeling sad/depressed (n = 21), embarrassed/ashamed (n = 10) and angry/frustrated (n = 3). Patients felt helpless (n = 5) due to the unpredictability of disease recurrence, and anxious (n = 19) about judgement from others. Many patients avoided social situations (n = 18), which impaired relationships and increased isolation. Coping strategies included concealment of hair loss through wigs or make-up, although fear of the displacement of these coverings also caused anxiety and the avoidance of activities that could result in scalp exposure (n = 22). Some patients became more accepting of AA over time, which lessened the emotional impact, though efficacious treatment was still desired. A conceptual framework was developed, and a conceptual model was created to depict the relationship between the physical signs/symptoms and the associated psychosocial effects of AA. Conclusion AA impairs patients’ emotional and psychological wellbeing, relationships and lifestyles. Greater disease awareness and effective treatments are needed.

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“…Alopecia areata (AA) is a chronic inflammatory disease characterized by an autoimmune reaction to hair follicles (HFs), [1][2][3][4][5][6][7] yet its exact pathobiology remains to be fully characterized. The current review attempts to highlight as yet insufficiently investigated frontiers in current AA pathobiology research, with emphasis on selected potential ''new'' players in AA pathobiology that deserve more systematic exploration.…”

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confidence: 99%

Frontiers in alopecia areata pathobiology research

Gilhar

Laufer-Britva

Keren

et al. 2019

Journal of Allergy and Clinical Immunology

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This current review explores selected and as yet insufficiently investigated frontiers in current alopecia areata (AA) pathobiology research, with an emphasis on potential ''new'' players in AA pathobiology that deserve more systematic exploration and therapeutic targeting. Indeed, new evidence suggests that CD8 1 T cells, which have long been thought to be the central players in AA pathobiology, are not the only drivers of disease. Instead, subsets of natural killer (NK) and so-called ''unconventional'' T cells (invariant NK T cells, gd T cells, classic NK cells, and type 1 innate lymphoid cells), all of which can produce large amounts of IFN-g, might also drive AA pathobiology independent of classical, autoantigen-dependent CD8 1 T-cell functions. Another important new frontier is the role of regulatory lymphocyte subsets, such as regulatory T cells, gd regulatory T cells, NKT10 cells, and perifollicular mast cells, in maintaining physiologic hair follicle immune privilege (IP); the extent to which these functions are defective in patients with AA; and how this IP-protective role could be restored therapeutically in patients with established AA. Broadening our AA research horizon along the lines suggested above promises not only to open the door to innovative and even more effective immunotherapy strategies for AA but will also likely be relevant for other autoimmune disorders in which pathobiology, ectopic MHC class I expression, and IP collapse play an important role.

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Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study

Cited by 40 publications

References 14 publications

Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers

Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers

“‘You lose your hair, what’s the big deal?’ I was so embarrassed, I was so self-conscious, I was so depressed:” a qualitative interview study to understand the psychosocial burden of alopecia areata

Frontiers in alopecia areata pathobiology research

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