Journal article
Uptake of health monitoring and disease self-management in Australian adults with neurofibromatosis type 1: strategies to improve care
Clinical genetics, Vol.89(3), pp.385-391
03/2016
PMID: 26081173
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Source: InCites
Abstract
Lifelong health monitoring is recommended in neurofibromatosis type 1 (NF1) because of the progressive and unpredictable range of disabling and potentially life-threatening symptoms that arise. In Australia, strategies for NF1 health surveillance are less well developed for adults than they are for children, resulting in inequalities between pediatric and adult care. The aims of this study were to determine the uptake of health monitoring and capacity of adults with NF1 to self-manage their health. Australian adults with NF1 (n = 94, 18-40 years) participated in a semi-structured interview. Almost half reported no regular health monitoring. Thematic analysis of interviews identified four main themes as to why: (i) did not know where to seek care, (ii) unaware of the need for regular monitoring, (iii) futility of health monitoring as nothing can be done for NF1, and (iv) feeling healthy, therefore monitoring unnecessary. Overall, there were low levels of patient activation, indicating that adults with NF1 lacked knowledge and confidence to manage their health and health care. Findings are discussed in the context of service provision for adults with NF1 in New South Wales, Australia.
Details
- Title
- Uptake of health monitoring and disease self-management in Australian adults with neurofibromatosis type 1: strategies to improve care
- Creators
- H. A. Crawford - University of SydneyB. Barton - Children's Hospital at WestmeadM. J. Wilson - Westmead HospitalY. Berman - Royal North Shore HospitalV. J. McKelvey-Martin - University of UlsterP. J. Morrison - Belfast Health and Social Care TrustK. N. North - Royal Children's Hospital
- Publication Details
- Clinical genetics, Vol.89(3), pp.385-391
- Publisher
- Wiley
- Number of pages
- 7
- Grant note
- This study was supported by a research grant, the Wingfield George Anderson Bequest from Ulster University, Coleraine, Co Londonderry, BT52 1SA, Northern Ireland, UK (Ms Crawford) with additional funding by the Institute for Neuroscience and Muscle Research, The Children’s Hospital at Westmead, NSW, 2145, Australia.
- Identifiers
- 991013092666302368
- Copyright
- © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
- Academic Unit
- Faculty of Health
- Language
- English
- Resource Type
- Journal article