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Lived experience of Silver-Russell syndrome: implications for management during childhood and into adulthood.

Abstract：

OBJECTIVE:There is limited information on the psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by slow growth in utero leading to short stature in adulthood. Such information could aid families in making difficult treatment decisions and guide management strategies for health professionals. We aimed to explore the lived experience of people with SRS across the lifespan. DESIGN/SETTING/PATIENTS:In-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of 15 adults (six women) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences: codes were then grouped to form overarching themes. RESULTS:Four themes were identified from participant accounts: (1) appearance-related concerns extending beyond height; (2) strategies to deal with real and perceived threats; (3) women's experiences of pain, disability and feeling older than their years; and (4) feeling overlooked in romantic relationships. These themes show that other factors, beyond short stature, affect patient well-being and indicate a mismatch between patient need and healthcare provision. CONCLUSIONS:Challenges in SRS during childhood and adolescence were central to the psychosocial impact of SRS, and were not limited to height. These challenges, as well as symptoms such as pain and fatigue for women, have not previously been documented. To help individuals with SRS develop strategies to manage psychosocial issues, we recommend clinicians incorporate psychological services as an integral part of multidisciplinary teams managing individuals with SRS during childhood, adolescence and adulthood.

journal_name

Arch Dis Child

journal_title

Archives of disease in childhood

authors

Ballard LM,Jenkinson E,Byrne CD,Child JC,Davies JH,Inskip H,Lokulo-Sodipe O,Mackay DJG,Wakeling EL,Temple IK,Fenwick A

doi

10.1136/archdischild-2018-314952

subject

Has Abstract

pub_date

2019-01-01 00:00:00

pages

76-82

issue

eissn

0003-9888

issn

1468-2044

pii

archdischild-2018-314952

journal_volume

104

pub_type

杂志文章

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Lived experience of Silver-Russell syndrome: implications for management during childhood and into adulthood.