| Autor: |
King A; Department of Rehabilitation, Phoenix Children's Hospital, 1919 East Thomas Rd, Phoenix, AZ, 85016, USA. AKing4@phoenixchildrens.com., Hanley H; DEBRA New Zealand, 123 Daniell Street, Newtown, Wellington, 6021, New Zealand., Popenhagen M; Department of Rehabilitation, Phoenix Children's Hospital, 1919 East Thomas Rd, Phoenix, AZ, 85016, USA., Perez F; DEBRA Chile, Francisco de Villagra 392, 7760099, Ñuñoa, Santiago, Chile., Thompson K; Royal Adelaide Hospital, Port Road, Adelaide, SA, 5000, Australia., Purvis D; Starship Children's Hospital, Park Road, Grafton, Auckland, 1023, New Zealand., Garcia N; DEBRA Spain, Asociación DEBRA-Piel de Mariopsa, C/ Jacinto Benavente No 12, 29601, Marbella, Málaga, Spain., Steinlein I; DEBRA Norge, Oslo, Norway., Werkentoft M; DEBRA Sweden, Stockholm, Sweden., Lightfoot M; DEBRA UK, The Capitol Building, Oldbury, Bracknell, Berkshire, RG12 8FZ, UK., Lahat M; Children's Hospital of Los Angeles, 4650 Sunset Boulevard, Los Angeles, CA, 90027, USA., Begum K; University Hospitals Birmingham NHS Foundation Trust, Mindelsohn Way, Edgbaston, Birmingham, B15 2GW, UK., Tanabe J; Douglas, AZ, USA. |
| Abstrakt: |
This article presents evidence-based Clinical Practice Guidelines (CPG) for the provision of healthcare services to address sexuality for people living with epidermolysis bullosa (EB). Currently, a lack of EB-specific research limits these services to sexual health assessment and intervention strategies designed for the general population. Due to the unique challenges of EB, a rare skin-fragility condition causing blistering responses to minor skin trauma and other systemic and secondary complications, condition-specific strategies are needed to support people with EB in achieving valued sexual lifestyles. This CPG represents the work of an international panel comprised of thirteen members including a medical doctor, nurses, psychologists, a social worker, an occupational therapist, and patient population involvement members living with EB. It describes the development of EB-specific recommendations for two primary domains of assessment and intervention related to sexuality: psychosocial and mechanical. Following a rigorous evidence-based guideline development process, this CPG establishes the first internationally actionable clinical practice recommendations for sexuality-related assessment and intervention for this population. Future research priorities are identified. Supplemental materials included provide additional support to clinicians in developing the necessary understanding and skills to promote equity and efficacy in this care domain. |
