Epidermolysis Bullosa
Conditions
Keywords
Hereditary epidermolysis bullosa (HEB), Pain control, Analgesic treatments
Brief summary
Hereditary epidermolysis bullosa (HEB) are rare genodermatoses, clinically characterized by epithelial and subepithelial fragility leading to the formation of blisters and spontaneous erosions on skin at the slightest contact, with possible mucosal damage. The care of these patients consists of therapeutic baths leading to renew bandages that sometimes covering the entire integument. These are difficult, delicate and painful moments that patients experience daily at home. For an unexplained reason for 70 to 80% of them, the weak or strong opioid analgesics, deemed necessary and prescribed for good pain control, are not taken on a regular basis as a premedication for baths and dressing changes. The aim of the study is to understand the child's brakes on taking weak or strong opioid analgesics at the time of care and the parents' difficulties in giving these treatments by means of individual interviews.
Detailed description
Hereditary epidermolysis bullosa (HEB) are rare genodermatoses, clinically characterized by epithelial and subepithelial fragility leading to the formation of blisters and spontaneous erosions on skin at the slightest contact, with possible mucosal damage. The Pain Medicine and Palliative Medicine Functional Unit (UFMDP) of Necker Hospital is involved on a daily basis in supporting the complex and multidisciplinary management of patients with the most serious forms of hereditary epidermolysis bullosa and their family. The care of these patients consists of therapeutic baths leading to renew bandages that sometimes covering the entire integument. These are difficult, delicate and painful moments that patients experience daily at home. The medical and paramedical professionals, from the UFMDP and from the reference center for Genetic Diseases with Cutaneous Expression (MAGEC) (Dermatology Department) of the Necker Hospital, surrounding these children, note that for an unexplained reason for 70 to 80% of them, the weak or strong opioid analgesics, deemed necessary and prescribed for good pain control, are not taken on a regular basis as a premedication for baths and dressing changes. Care is painful, increasing the vicious circle of anxiety, conflict with caregivers, family and ultimately pain. The aim of the study is to understand the child's brakes on taking weak or strong opioid analgesics at the time of care and the parents' difficulties in giving these treatments by means of individual interviews.
Interventions
OTHERInterview
Semi-structured interview, lasting a maximum of one hour
Sponsors
Assistance Publique - Hôpitaux de Paris
URC-CIC Paris Descartes Necker Cochin
Study design
Observational model
FAMILY_BASED
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
6 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Francophone children and adolescents with hereditary epidermolysis bullosa and of an age to express themselves verbally * French-speaking holders of parental authority * Regular follow-ups at the reference center for genetic diseases with cutaneous expression (MAGEC), dermatology department of Necker hospital * Pain at the time of treatment, the evaluation of which is greater than 4/10 (visual analogue scale VAS) without taking weak or strong opioid analgesics, yet prescribed as premedication * Holders of parental authority and patients informed and not opposing their participation in the study
Exclusion criteria
* Children and adolescents without pain at the time of treatment or for whom paracetamol is sufficient to obtain good pain control * Children and adolescents already taking analgesic treatments even if their pain is not well balanced at the time of care
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Barriers to taking weak or strong opioid analgesics prescribed | Day 0 | Qualitative analysis of the semi-structured interview |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Barriers to giving weak or strong opioid analgesics prescribed | Day 0 | Qualitative analysis of the semi-structured interview |
Countries
France
Contacts
PRINCIPAL_INVESTIGATORSarah Chaumon
Assistance Publique - Hôpitaux de Paris
STUDY_DIRECTORCéline Greco, MD
Assistance Publique - Hôpitaux de Paris
Outcome results
None listed