Teasing from peers, unwanted questions from others, and side effects from treatment were all problems reported in the study, “Exploring the impact of paediatric localized scleroderma on health‐related quality of life: Focus groups with youth and caregivers,” published in the journal British Journal of Dermatology.
People with localized scleroderma typically have thickened patches of skin on different areas of the body. In children and adolescents, this form of the disease can limit limb growth, and impair physical and social functioning.
While the experiences of affected youth may guide clinical decisions, patient-reported data on how localized scleroderma affects HRQoL remain scarce.
The study involved 11 scleroderma patients ranging in age from 9 to 15. They were divided into focus groups of three to four children (younger children, ages 8–10; early adolescents, ages 11–13; and adolescents, 14–19). A total of 16 caregivers (at least one for each patient) also participated. These included mothers, fathers, grandparents, and extended family members.
Each group started with a drawing activity as an icebreaker, followed by in-depth discussions of topics including skin symptoms, functional impairment, physical appearance, family and peer relationships, and the impact of treatment.
Some patients reported mild, uncomfortable sensations in their skin, though descriptions varied. Some described their skin as feeling “rough and hard,” “shiny and smooth,” “wrinkly … just like a scar,” “flaky,” or “different,” and some reported mild pain. Caregivers, in contrast, rarely mentioned these skin sensations.
Limits on physical activities depended on the location of scarring. Those with scarring on the limbs reported limitations to activities such as martial arts, playing a musical instrument, or dancing.
“I used to do tap dance, and I couldn’t do most of the steps because … I couldn’t balance … all my weight onto like one leg,” said one child.
Scarring on the hands and arms led to difficulties writing or taking tests. One youth reported problems washing, and another spoke of trying to “protect” the lesions during activities. Those without limb scarring did not report physical limitations.
Patients also reported symptoms not directly related to skin scarring, such as joint and muscle pain. Complaints included loss of limb and joint mobility, cramping in the limbs, and joint pain interfering with sleep. “My legs go into like [Charley] horses,” one youth said. “It always wakes me up a night.” Caregivers often confirmed those reports.
Issues with body image were more prominent in older youth. The 11- to 15-year-olds reported insecurities about their bodies where lesions were most visible.
“You wake up and you just like look in the mirror and you’re just like what’s wrong?” asked one. “Like, why is that here?”
Some patients said they needed to cover affected sites using clothing, hair, makeup, or false teeth.
Caregivers were less aware of the impact on body image.
The patients said other people, including peers and members of the public, would stare and judge them, and make comments on their visible scars or weight gain caused by prednisone treatment.
Unwanted questions often triggered feelings of “being different” or worries about explaining localized scleroderma, they said.
Nausea and weight gain, the most frequent side effects of treatment, “seemed extremely distressing and burdensome for both youth and caregivers,” the researchers said.
Several participants said prednisone was the worst part of the disease. The associated weight gain was described as being very noticeable to peers and others.
“This is the first qualitative evaluation of HRQoL in caregivers and youth with all major subtypes of localized scleroderma,” the researchers said. “These results support formal, longitudinal evaluations of HRQoL in paediatric LS patients to determine ongoing needs for clinical and psychological services.”
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