Volume 1 Supplement 1

48th Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida

Open Access

Quality of life in spina bifida patients: results of an Italian survey

  • P Buffa1Email author,
  • M De Gennaro1,
  • F Battaglino1,
  • U Beseghi1,
  • F Di Lorenzo1 and
  • M Torre1
Cerebrospinal Fluid Research20041(Suppl 1):S41

https://doi.org/10.1186/1743-8454-1-S1-S41

Published: 23 December 2004

Background

The objectives were: 1. to investigate the major topics on the Quality of Life (QOL) of Spina Bifida patients; 2. to evaluate attitudes, the experienced and the behaviours concerning everyday activities, social life participation and familial relationship; 3. to evaluate the information needs; 4. to evaluate the physical and psychological problems related to vesical and intestinal management.

Materials and Methods

1. Qualitative study based on focus groups with parents of patients < 18 years, adult spina bifida patients and care givers (2001); 2. Statistical validation of the questionnaire was based on test-retest analysis (Nov. 2002–Jan. 2003), alpha index of Cronbach and follow up (recall) on 15 patients; 3. The questionnaires were anonymous, self compiled (some help by the parents being allowed) and sent by mail (the whole Italian territory was represented); 4. Statistical analysis of the results was made.

The sample was of 173 patients (51% female and 49% male) with an estimated number of prevalent cases of 4000. The standard error was ± 10% and the confidence index 95%. Some subgroups were studied with test for trend.

Results

Open spina bifida were 83% (of which 88% of myelomeningocele); 91% had VP shunt (>40% had had more than 1 procedure). The most important problems affecting the QOL were vesical management (26%), intestinal management (11%) or both (20%), followed by disability due to ambulatory impairment (25%) and sexual problems (15%). Management of urinary incontinence was based on CIC (96% of the sample, started at an early age and self managed in 82%) and drugs (anticholinergics in 53%): 74% wear diapers (no leakage in 19%, once per month in 19%, once per week in 11%, once per day in 17%, more than twice daily in 35%). Stool leakage was absent in 46%, once in a month in 34%, once weekly in 11%, once daily in 4 % and more than once in 5%); for bowel management 68% did not use any treatment, 16% enemas, 4% anal plug, 9% drugs). Everyday activities, school attendance, work and hobbies have been investigated: 73% have a computer (versus 9% of Italian population) and 63% access to the internet (versus 18%). The majority of these patients showed a good autonomy about personal hygiene and dressing, less about housework. Decisional autonomy and familial dialogue were poor with excessive protection by the family or care givers.

Authors’ Affiliations

(1)
IRCCS "G. Gaslini"

Copyright

© The Author(s) 2004

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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