title: Health-related quality of life is compromised in individuals with spina bifida: results from qualitative and quantitative studies.
abstract: Spina bifida (SB) accounts for approximately 90% of total neural tube defects. According to the degree of SB severity, the range of associated symptoms and complications varies greatly. Given the complexity and diversity of these complications, individuals with SB might suffer from livelong impairment. This review presents an overview of the impact of SB on patients' health-related quality of life (HRQoL) and explores results from published quantitative and qualitative studies regarding the HRQoL impact of SB on patients, as well as comparing results of existing studies to national norms. A literature search using three electronic databases PUBMED, PsycINFO, and Embase was performed to identify relevant studies dating from January 1976 to November 2010. To satisfy the initial inclusion criteria, articles had to contain studies that were specific to HRQoL in patients with SB. Findings highlight that HRQoL is significantly impaired in patients with SB. Making sure that the public is aware of the disease and how to minimise the risk of NTD, such as SB (e.g., through adequate folate levels at time of conception, etc.) is essential to ensure that fewer individuals face the burden of NTDs in the future.
authors.affiliation: Adelphi Values, Adelphi Mill, Bollington, Macclesfield, Cheshire SK10 5JB, UK.
authors.forename: Diana
authors.initials: D
authors.lastname: Rofail
authors.affiliation: Adelphi Values, Adelphi Mill, Bollington, Macclesfield, Cheshire SK10 5JB, UK.
authors.forename: Laura
authors.initials: L
authors.lastname: Maguire
authors.affiliation: Bayer Pharma AG, Berlin, Germany. Electronic address: marion.kissner@bayer.com.
authors.forename: Marion
authors.initials: M
authors.lastname: Kissner
authors.affiliation: Bayer Pharma AG, Berlin, Germany.
authors.forename: Antje
authors.initials: A
authors.lastname: Colligs
authors.affiliation: Adelphi Values, Adelphi Mill, Bollington, Macclesfield, Cheshire SK10 5JB, UK.
authors.forename: Linda
authors.initials: L
authors.lastname: Abetz-Webb
mesh_terms: D004644:Emotions; D006304:Health Status; D006801:Humans; D008603:Mental Health; D010146:Pain / Q000209:etiology; D036301:Qualitative Research; D011788:Quality of Life; D012649:Self Concept; D012720:Severity of Illness Index; D058992:Social Participation; D016135:Spinal Dysraphism / Q000150:complications* / Q000517:prevention & control / Q000523:psychology*
keywords: Health-related quality of life; Questionnaires; Spina bifida