|Appears in Collections:||Faculty of Health Sciences and Sport Journal Articles|
|Peer Review Status:||Refereed|
|Title:||Challenging symptom profiles of life-limiting conditions in children: A survey of care professionals and families|
|Citation:||Malcolm C, Forbat L, Anderson G, Gibson F & Hain R (2011) Challenging symptom profiles of life-limiting conditions in children: A survey of care professionals and families, Palliative Medicine, 25 (4), pp. 357-364.|
|Abstract:||This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in childrenwhere, because of their rarity, little is understood regarding the significant symptom challenges of families and careprofessionals who support them. In this initial phase, care professionals (n¼43) and families (n¼16) completed a surveyto identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage.Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals'rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirementfor additional clinical evidence to support symptom management, and the progressive nature of these diseaseswhere symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties,visual impairments and communication impairments as those being most difficult to manage and having mostimpact on quality of life for children and families.|
|Rights:||The publisher does not allow this work to be made publicly available in this Repository. Please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study.|
|Affiliation:||HS Research - Stirling|
HS Research - Stirling
Great Ormond Street Hospital for Sick Children
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