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Care for children with severe chronic skin diseases

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European Journal of Pediatrics Aims and scope Submit manuscript

Abstract

In this study, the care for children with a severe chronic skin disease in our national expert center of pediatric dermatology was evaluated. Patients and their parents were questioned by using existing questionnaires: 50 pediatric patients completed the modified “my positive health” questionnaire of Huber and 51 parents completed Pelentsov parental needs scale. Nineteen involved professionals answered a questionnaire with open boxes. Parents of children with a variety of chronic skin diseases and young adult patients were interviewed to find out what an optimal approach would look like according to them. Children with a severe chronic and/or congenital skin disorder score high on the “my positive health” questionnaire, indicating they are able to adapt and self-manage. Their highest median score was measured for the dimension “quality of life.” Their parents expect improvement of “working with health care professionals,” more specifically they want them to adopt a more holistic approach throughout the patient’s life. Structured interviews showed they expect that a multidisciplinary team of care providers determine together with the patient and its family—in advance—which care is needed, at what time and by whom. The interviewed professionals indicated adoption of a holistic multidisciplinary approach as the single largest improvement to achieve better care.

Conclusion: Although these children with a severe chronic and/or congenital skin disease were able to adapt and self-manage, they need a more personalized integrative multidisciplinary and systematic transmural approach covering all aspects of life during their lifetime.

What is Known:

• Severe skin disorders affect the child and its family in several ways. In our expert center, we try to optimize the care for these children through a multidisciplinary approach.

What is New:

• To our knowledge, no English publication describes the requirements for good care for pediatric patients with severe chronic skin disorders and how to optimize this care. We evaluated the health status of children with severe chronic skin disorders and the strengths and weaknesses of past and current care by questioning these children, their parents, adult patients, and involved professionals.

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Abbreviations

CDLE:

Chronic discoid lupus erythematosus

CLOVES:

Congenital, lipomatous, overgrowth, vascular malformations, epidermal nevi, and spinal/skeletal anomalies and/or scoliosis

CMN:

Congenital melanocytic naevus

DIM:

Dimension

ED:

Ectodermal dysplasia

e.g.:

For example

Erasmus MC:

Erasmus University Medical Center

etc.:

Etcetera

F:

Female

IFAP:

Ichthyosis follicularis, alopecia, and photophobia

IPEX:

Immune dysregulation, polyendrocrinopathy, enteropathy, X-linked

LUMBAR:

Lower body hemangioma, urogenital anomalies, myelopathy, bone deformities, anorectal malformations, renal anomalies

M:

Male

N/A:

Not applicable

Pt:

Patient

SWS:

Sturge-Weber syndrome

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Acknowledgements

Special thanks go to all the children and parents who participated in this study. We thank Machteld Huber and Lemuel Pelentsov for their permission to use their questionnaires. Further, we thank Anneke Jonker, Jolien van der Geugten, Hanneke Vandijk and Karin Veldman for their input in the preparing interviews. This project is a contribution to the aims of the European Reference Network Skin (ERN-SKIN).

Author information

Authors and Affiliations

  1. Department of Pediatrics, O.L.Vrouw Hospital, Aalst, Belgium

    Hannelore De Maeseneer & Dirk Van Gysel

  2. Department of Dermatology, Ghent University Hospital, Ghent, Belgium

    Sofie De Schepper

  3. Department of Pediatrics, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands

    Carsten R. Lincke & Barbara J. Sibbles

  4. Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands

    Josette J. W. M. Versteegh

  5. Department of Dermatology, Erasmus MC-Sophia Children’s Hospital Rotterdam-Center of Pediatric Dermatology, Rotterdam, The Netherlands

    Welling Oei

  6. Department of Rehabilitation Medicine, Erasmus MC University Medical Center, Rotterdam, The Netherlands

    Robert F. Pangalila

  7. Department of Dermatology, Erasmus MC-Sophia Children’s Hospital Rotterdam - Center of Pediatric Dermatology, Health Care Provider of the European Reference Network SKIN, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands

    Suzanne G. M. A. Pasmans

Authors
  1. Hannelore De Maeseneer
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  2. Dirk Van Gysel
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  3. Sofie De Schepper
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  4. Carsten R. Lincke
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  5. Barbara J. Sibbles
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  6. Josette J. W. M. Versteegh
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  7. Welling Oei
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  8. Robert F. Pangalila
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  9. Suzanne G. M. A. Pasmans
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Contributions

Hannelore De Maeseneer designed the study, performed data collection and analysis, and drafted the manuscript.

Dirk Van Gysel and Sofie De Schepper critically reviewed the manuscript.

Carsten R. Lincke, Barbara J. Sibbles, Josette J.W.M. Versteegh, Welling Oei, and Robert F. Pangalila were involved in the design of the study and in data interpretation and they critically reviewed the manuscript.

Suzanne G.M.A. Pasmans conceived the study, coordinated all study phases, and has supervised and extensively revised the manuscript.

All authors read and approved the final manuscript including the authorship list.

Corresponding author

Correspondence to Suzanne G. M. A. Pasmans.

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Conflict of interest

The first author (Hannelore De Maeseneer) has received an unrestricted grant of Laboratoires Expanscience. The other authors declare that they have no conflict of interest.

Ethical approval

This article does not contain any studies with human participants or animals performed by any of the authors.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Communicated by Peter de Winter

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De Maeseneer, H., Van Gysel, D., De Schepper, S. et al. Care for children with severe chronic skin diseases. Eur J Pediatr 178, 1095–1103 (2019). https://doi.org/10.1007/s00431-019-03366-z

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  • DOI: https://doi.org/10.1007/s00431-019-03366-z

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