Quality of life assessment in esophageal atresia patients: a systematic review focusing on long-gap esophageal atresia.

BACKGROUND: Children born with esophageal atresia (EA) have inherent abnormalities in esophageal motility which may impact upon patient and family Quality of Life (QoL). Currently, paucity of data exists for long-term outcomes of long-gap EA. We aimed to: (1) summarize QoL tools reported in the literature, focusing upon studies involving long-gap EA patients, and (2) compare QoL for long-gap versus non-long-gap EA patients. METHOD: We performed a systematic review of Cochrane Register of Controlled Trials, PubMed, EMBASE, and Ovid databases (January 1980-May 2018) in accordance with the PRISMA protocol. RESULT: Six studies were identified (536 patients total), and 419/536 (78%) patients completed QoL assessment. Response rates ranged from 29% to 100%. Median study size was 86 (range 8-159). Esophageal atresia type was described in 477 patients, and 74/477 (16%) were long-gap. Common assessment tools were Gastrointestinal Quality of Life Index and 36-Item Short-Form Health Survey. Compared with healthy individuals, long-gap EA patients suffered more gastrointestinal symptoms. There were no significant differences in QoL outcomes between long-gap and non-long-gap EA patients. CONCLUSION: Current literature suggests no significant difference in QoL outcomes between long-gap and non-long-gap EA patients. However, due to questionnaire variability and range of response rates, the data should be interpreted with care. LEVEL OF EVIDENCE: Level II.

Sporting opportunities for people with physical disabilities: Mixed methods study of web-based searches and sport provider interviews.

ISSUE ADDRESSED: To assess web-based information about sport opportunities for people with physical disabilities and to explore barriers and potential solutions to offering such opportunities from the perspective of sporting organisations. METHODS: A mixed method study was conducted in 2 stages focusing on 26 high-participation sports. Stage One involved conducting web-based searches of sporting organisations at national (Australia), state (NSW) and local club levels and auditing the websites to identify the mention of sport opportunities for people with disabilities. Stage Two involved conducting semi-structured phone interviews with 25 sport providers identified from Stage One to discuss barriers and potential solutions to providing these opportunities. Data from interviews were transcribed verbatim and thematically analysed. RESULTS: Across 26 sports, 138 organisations (43 national, 33 states, 62 local clubs) were identified. Information about sport opportunities for people with disabilities decreased from national (86% of websites mentioned such opportunities) to state (76%) to club (37%) level. Barriers identified included funding, awareness, lack of coordination between organisations and people's attitudes. Potential solutions included fostering working partnerships and increasing understanding. CONCLUSION: Greater awareness within sporting organisations of the role of sport for people with disabilities is needed. Finding information on what disability sport opportunities are available particularly at a local participation level is currently challenging. SO WHAT?: Organisations need to work in partnership within and between sports and with other sectors to provide accessible information and appropriate opportunities. This should be supported by government policy and funding and informed by the needs of people with disabilities.