We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- Title
Nursing patients with xeroderma pigmentosum in the UK.
- Authors
Turner, Sally; Mullard, Katie; Fassihi, Hiva; Sarkany, Robert
- Abstract
'Children of the night' and 'moon children' are examples of the names used to describe those with xeroderma pigmentosum (XP), a severe, lifelong, genetic DNA repair disorder. Those with XP live their life in potential fear of daylight, which has the ability to harm them. Normal everyday tasks many people take for granted expose people with XP to skin cancer-inducing ultraviolet (UV) radiation. However, if protective measures are put in place early in life, some of the complications seen from XP - in particular skin cancers - can be reduced or avoided all together. This article looks at the national specialised service that was established at St John's Institute of Dermatology, London, in 2010. The service provides a new model of care for XP patients of all ages in the UK, centred around the XP CNS working as an autonomous outreach practitioner as well as being part of a hospital-based XP multidisciplinary team. The patient's care is shared between local services and the national XP centre.
- Subjects
UNITED Kingdom; GENETIC disorder diagnosis; GENETIC disorder treatment; SKIN disease diagnosis; SKIN tumors; ENVIRONMENTAL exposure prevention; SKIN disease treatment; DERMATOLOGIC nursing; GENETIC disorders; HEALTH care teams; HEALTH education; PATIENT education; SCHOOL nursing; SKIN diseases; TEACHING aids; WORLD Wide Web; INFORMATION resources; SYMPTOMS; PREVENTION
- Publication
Dermatological Nursing, 2013, Vol 12, Issue 3, p20
- ISSN
1477-3368
- Publication type
Article