Care for children with severe chronic skin diseases

Maeseneer, Hannelore De; Gysel, Dirk Van; Schepper, Sofie De; Lincke, Carsten R.; Sibbles, Barbara; Versteegh, Josette; Oei, Welling; Pangalila, Robert; Pasmans, Suzanne G.M.A.

doi:10.1007/s00431-019-03366-z

Cited by 11 publications

(12 citation statements)

References 12 publications

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“…Objective and subjective domains are described by Muldoon et al (1998) 1CADIS, Childhood Atopic Dermatitis Impact Scale; CarGOQoL, The CareGiver Oncology Quality of Life; DFI, Dermatitis Family Index; EB-BoD, Epidermolysis Bullosa Burden of Disease; Family Pso, Family Psoriasis; FBI, Family Burden Ichthyosis; FDLQI, Family Dermatology Life Quality Index; MCID, minimal clinically important difference; PASECI, Parental Self-Efficacy with Eczema Care Index; PFI-15, Psoriasis Family Index; PiQoL-AD, Parents’ Index of Quality of Life in Atopic Dermatitis; QoL, quality of life; QPCAD, QoL in Primary Caregivers of Children with Atopic Dermatitis.…”

Section: Resultsmentioning

confidence: 99%

“…Paediatric dermatology is a unique speciality in that children with lifelong and life-limiting skin disorders are increasingly being cared for by caregivers at home,1 which requires considerable cognitive, emotional and physical resources 2. Skin disease is the fourth leading cause of global disease burden with associated prevalence, care requirements and costs comparable with other diseases, such as cardiovascular disease and diabetes 3–5.…”

Section: Introductionmentioning

confidence: 99%

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Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions

2022

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ObjectiveTo identify validated dermatology-specific and disease-specific psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions. A secondary objective was to assess the adequacy of their measurement properties.DesignSystematic review.Data sourcesEMBASE, PsycINFO, MEDLINE (in Ovid SP), Cochrane, Cumulative Index to Nursing and Allied Health EBSCO, U Search and Web of Science were searched (2000–5 October 2021). Grey literature, bibliographies, online databases of QoL tools and several trial registers were searched (2000–5 Oct 2021).Eligibility criteriaEligible studies involved adult caregivers caring for a child (no age limit) with any form of any skin condition. Predetermined exclusion criteria, as per protocol, were applied to the search results.Data abstraction and synthesisTitle, abstract, full-text screening and data abstraction (standardised forms) were done independently in duplicate. Both’s predefined methodological criteria assessed risk of bias. Narrative synthesis was used to present the findings.Results187 full-text articles were examined from a total of 8979 records. Most tools were generic QoL tools, relevant to spouse/partner or based on their child’s perception of the disease or assessed patients’ quality of life. Following quality appraisal, 26 articles were identified, and 11 tools (1 dermatology-specific and 10 disease-specific) were included. Information outcome domains were provided for each tool (study specific, questionnaire specific, adequacy of measurement properties and risk of bias). No literature was found pertaining to the use of these tools within healthcare settings and/or as e-tools.DiscussionWith limited evidence supporting the quality of their methodological and measurement properties, this review will inform future dermatological Core Outcome Set development and improve evidence-based clinical decisions. Increasing demand on limited healthcare resources justifies the codevelopment of an accessible solution-focused psychosocial needs assessment e-tool to promote caregiver health outcomes.PROSPERO registration numberPROSPERO (CRD42019159956).

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions

2022

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“…Early, reasonable and short-term use of isotretinoin seems to reduce the incidence of acne in the future. Comfortable functioning in the society is important [30]. The financial benefits are also flowing from this.…”

Section: Discussionmentioning

confidence: 99%

The use of isotretinoin in acne therapy in early childhood and its effect on the occurrence of acne symptoms later in life. Eight-year follow-up

Brzeziński¹,

Wollina²,

Śmigielski³

et al. 2022

pdia

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Introduction: Acne vulgaris is a chronic inflammatory skin disease of the pilosebaceous follicles that affects patients of all ages. Aim: Use of isotretinoin in the early stages of the disease to prevent subsequent lesions of acne, including prolonged treatment and acne scars at a later age. Material and methods: A retrospective, comparative study was carried between January 2010 and November 2018. The study population consisted of 90 children aged 9-18 years with acne. During treatment by isotretinoin the clinical evaluation was done every month. Patients were divided into three groups according to age. One of the qualification criteria was follow-up visits. Results: A total of 90 children (67.8% females; mean age: 13.5 years) were enrolled. In group A (30 individuals -aged 9-11) and B (30 individuals -aged 12-13), treatment was terminated 2 months after clinical improvement (mean: 3 months). In control group C (30 individuals -aged 14-18), treatment was carried out using average cumulative dose 135 mg/kg bw/day. All groups showed up for follow-up. after 1 to 8 years. In groups A and B, 13 people underwent a second acne treatment; in 3.33% oral isotretinoin was used, in 18.33% topical treatment. In group C, 30 (100%) individuals underwent a second acne treatment; in 20% oral isotretinoin was used, and 80% required a topical treatment. Acne scars and post acne hyperpigmentation have been documented in 73.33% in group C. Conclusions: Early, reasonable and short-term use of isotretinoin can reduce the incidence of acne in the future and reduce the occurrence of secondary acne symptoms.

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“…[1][2][3] Childhood skin conditions have potential to create a psychological burden at a time when identity is developing and may affect individuals equally, regardless of gender. 4 There might also be implications for the family, specifically for the child's main caregiver's psychological wellbeing 5 and sleep. 6,7 Parents may share the burden of their child's skin condition from the demands of attending appointments, and increased housework from shedding skin and unpleasant treatments.…”

Section: Introductionmentioning

confidence: 99%

Parent and child experience of skin conditions: relevance for the provision of mindfulness-based interventions

Hughes

Shelton

Penny

et al. 2022

British Journal of Dermatology

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Background Managing a skin condition can be difficult, and there is a lack of psychological support for children and their families. Objectives The objectives of this study were to identify issues surrounding caring for a child with a skin condition, investigate experiences of current psychological support to gain a sense of what is needed, and determine the relevance of offering mindfulness-based interventions for children and families. Design This study employed a mixed inductive and deductive form of qualitative inquiry to understand children and families experiences and needs. Methods Twenty-three participants (n = 12 parents/carers, n = 11 female, n = 1 male), (n = 11 children, n = 6 female, n = 5 male, aged 8-11 years) were recruited with an advert posted on social media. In-depth data was collected from semi-structured interviews. Interviews were recorded, transcribed, and analysed with a descriptive form of thematic analysis. Results Systematic analysis of the data led to five themes being developed: (1) Caregiver burden of childhood skin conditions; (2) Skin condition overshadowing childhood; (3) Battling for recognition and lack of support; (4) Naturalistic use and understanding of mindfulness in everyday coping: and (5) Openness and relevance of offering a mindfulness-based interventions. Conclusions Living with a skin condition was reported as being associated with mood disturbance, with impacts on schooling, sleep, and daily life. Parents and children expressed a desire for short/accessible interventions that could fit with daily routines and might provide the opportunity to connect with other families. The findings indicate that mindfulness-based interventions may be likely to be accepted, as many participants had experience of using mindful techniques in school, and described that they were naturalistically using ‘mindfulness’ to manage itch and stress. However, the findings indicate that a number of misconceptions exist about the fundamental nature and aims of mindfulness. Addressing misconceptions related to mindfulness need to be considered when planning both future studies and service delivery.

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Care for children with severe chronic skin diseases

Cited by 11 publications

References 12 publications

Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions

Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions

The use of isotretinoin in acne therapy in early childhood and its effect on the occurrence of acne symptoms later in life. Eight-year follow-up

Parent and child experience of skin conditions: relevance for the provision of mindfulness-based interventions

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