Patients’ and Caregivers’ Experiences With Atopic Dermatitis–Related Burden, Medical Care, and Treatments in 8 Countries

Capozza, Korey; Funk, Melanie; Hering, Marjolaine; Lang, Jessica; Merhand, Stéphanie; Manion, Rachael; Orevillo, Kara; Picozza, Mario; Proctor, Andrew; Schwennesen, Thomas; Begolka, Wendy Smith; Tullos, Kathryn Z.; Talent, Cheryl; Tu, Michelle; Vastrup, Anne Skov; Schwartz, Alan

doi:10.1016/j.jaip.2022.10.032

Cited by 24 publications

(15 citation statements)

References 16 publications

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“…Acceptance in health education is possibly due to emotion during the experience of the game [ 55 ]. More severe AD is marked by mental health consequences and emotional burdens [ 14 , 25 ].…”

Section: Discussionmentioning

confidence: 99%

“…Calcineurin inhibitors are approved for children above six months of age. Specialist care is essential for the treatment of severe AD patients [ 25 ]. In those who do not respond to conventional treatment, alternative diagnosis and therapy were also considered [ 24 , 26 ].…”

Section: Introductionmentioning

confidence: 99%

“…Involving both children and parents in decision making has been reported to enhance treatment outcomes related to psychosocial difficulties and functioning [ 43 ]. SDM for AD patients was commonly reported in the United States and was associated with better long-term outcomes of symptom control and higher satisfaction in both adults and children [ 25 ]. Under the supervision of the Joint Commission of Taiwan, many SDMs for AD have been created in medical institutions.…”

Section: Introductionmentioning

confidence: 99%

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Multimedia Mixed Reality Interactive Shared Decision-Making Game in Children with Moderate to Severe Atopic Dermatitis, a Pilot Study

et al. 2023

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(1) Objective: Atopic dermatitis (AD) is a recurring skin disease that affects children’s daily activities and sleep quality. Due to the limitations of children’s understanding and ability to express themselves, shared decision making (SDM) is often made by guardians, which thus affects the acceptance and effectiveness of children’s treatments. Previous studies have demonstrated that involving both children and parents in decision making may help improve treatment outcomes; thus, we designed a multimedia mixed reality (MR) interactive game of SDM for children with moderate to severe AD. (2) Methods: Research participants included 6–18-year-old patients with moderate to severe AD. This research consisted of the following steps: designing SDM; character setting and visual design; performing games; system modification and optimization; screen editing and dubbing; and user testing and questionnaires by the System Usability Scale (SUS). (3) Results: We completed the SDM design for children with moderate to severe AD. Four different treatments were biologics, oral immune-modulating drugs, phototherapy, and wet wrap. An animated PowerPoint slide showed the AD apple rolling around before treatments and the AD apple sleeping soundly after treatments. Instructions with video teaching for the four different treatments were played, and then, the MR was turned on so that the patients could help the AD apple in the metaverse to undergo these four treatments. A total of 12 moderate to severe AD patients and six control patients used the game, all aged between six and eighteen years old, with an average SUS score of 81.0 and a standard error of 2.1 points. Adjective ratings yielded a rating between good and excellent. The game showed acceptable usability. We found no statistically significant differences in SUS scores between patients with and without moderate to severe AD or between boys and girls nor significant associations between SUS and age or severity. The analysis identified that the two items with the lowest SUS scores were “I think that I would need the support of a technical person to be able to use this product” and “I needed to learn a lot of things before I could get going with this product”. Both of these comments show the limitations of this game. (4) Conclusions: Overall, this study provides the first MR SDM game that has passed the SUS and can be used as an aid in clinical SDM.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Multimedia Mixed Reality Interactive Shared Decision-Making Game in Children with Moderate to Severe Atopic Dermatitis, a Pilot Study

et al. 2023

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“…Finally, educating parents may help to overcome the underestimation of disease severity and enhance the effectiveness of shared decision-making, to improve willingness to start/adhere to therapy and the use of appropriate daily care routines able to prevent AD flaring up. 51 …”

Section: Discussionmentioning

confidence: 99%

“…Approximately half of the children reported consulting the dermatologist (47.9%), the pediatrician (50.0%) or the GP (46.4%) once every 2-3 months. In the previous week, only 51.9% used specific detergents and 48.7% moisturizing creams, 92% were on active treatment for AD, whereas 8% were not, primarily for fear of corticosteroids. In the past year, despite the support of multiple physicians and the availability of alternative treatments, 91.9% of parents reported at least one flare of the disease (mean value 7.6 flares); in 30.0% of cases, flares required a visit to the emergency room (mean value 2.9 visits) and in 15.0% of cases, a hospitalization (mean value 2.5 admissions).…”

Section: Population Characteristics and Clinical Manifestations Of Admentioning

confidence: 99%

Implications of Atopic Dermatitis on the Quality of Life of 6–11 Years Old Children and Caregivers (PEDI-BURDEN)

Neri¹,

Galli²,

Baiardini³

et al. 2023

JAA

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Purpose Atopic dermatitis (AD) is a chronic, relapsing and remitting inflammatory skin disease characterized by intense itch. The disease burden includes physical limitations, psychosocial discomfort, and a reduced quality of life (HRQoL). This study presents the results of a parent-reported survey on the psychosocial impact of AD on Italian pre-adolescent children (6–11 years old), with a specific focus on bullying, self-isolation, absenteeism, and presenteeism. Methods An online questionnaire was sent to 3067 random recipients and 160 matched the inclusion criteria for age, self-reported AD diagnosis, localizations (according to ISAAC), and disease severity (POEM ≥8). 100 children, with comparable ages, not matching the inclusion criteria for AD, were recruited as a control group. Results Children with AD and their caregivers had a significantly lower quality of sleep (QoS) compared to the control group. The presence of AD was directly responsible for many restless nights, both in children and caregivers (58.9 and 55.4 respectively). Children with AD and their parents also experienced significantly more daytime drowsiness (43.6 and 54.6 days, respectively). Children with AD were more frequently victims of bullying at school (20.0% vs 9.0%; p≤0.05) or in other social environments (16.9% vs 3.0%; p≤0.05). AD caused 17.7 days of absenteeism and 20.1 days of presenteeism per student over the previous 12 months, accounting for 37.8 days of study impairment overall. Severe/very severe AD had a significantly greater impact on presenteeism than moderate AD (25.1 vs 17.5 days; p≤0.05). Presenteeism, which was more pronounced among bullied students, was positively correlated with absenteeism only in the AD cohort. Conclusion AD has a detrimental impact on the HRQoL of pediatric patients, causing stigmatization and social isolation. Functional distress was also reported by caregivers. Our study might inform the public and policymakers about the disease burden of AD at a young age.

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Treatment satisfaction in adults with atopic dermatitis: a cross-sectional, population-based study examining patient and physician perspectives in the US.

C. Chiesa Fuxench,

Smith Begolka,

Simpson

2024

Arch Dermatol Res

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Patients’ and Caregivers’ Experiences With Atopic Dermatitis–Related Burden, Medical Care, and Treatments in 8 Countries

Cited by 24 publications

References 16 publications

Multimedia Mixed Reality Interactive Shared Decision-Making Game in Children with Moderate to Severe Atopic Dermatitis, a Pilot Study

Multimedia Mixed Reality Interactive Shared Decision-Making Game in Children with Moderate to Severe Atopic Dermatitis, a Pilot Study

Implications of Atopic Dermatitis on the Quality of Life of 6–11 Years Old Children and Caregivers (PEDI-BURDEN)

Treatment satisfaction in adults with atopic dermatitis: a cross-sectional, population-based study examining patient and physician perspectives in the US.

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