title: Health-related quality of life compared to life situation and incontinence in adults with myelomeningocele: is SF-36 a reliable tool?
abstract: OBJECTIVE
  To evaluate health-related quality of life (HRQoL) in adults with myelomeningocele (MMC) measured by SF-36.
  
  
  METHODS
  All individuals (134) with MMC from western Sweden born before 1981, 69 with a median age of 34 years (range 27-50), participated in a telephone interview. Of these, 61 took part in SF-36 (short form 36 health questionnaire survey).
  
  
  RESULTS
  The group overall had significant impairment of physical functioning (PF)***, role physical (RP)***, general health GH*** as well as a lower physical component summary (PCS)*** compared to the reference group, while the mental component summary (MCS) was significantly higher***. The comparison between life situation and PCS was favorable for individuals 20-29 years of age or employed. In individuals exhibiting dysphoria during the interview, PCS was negatively affected, however MCS was unaffected. MCS was higher in non-ambulatory individuals* and in those not able to name a negative life experience* (* < 0.05, ** < 0.001, *** < 0.0001). HRQoL as evaluated by SF-36 was unaffected by fecal incontinence, partnership and offspring.
  
  
  CONCLUSIONS
  Our findings indicate that life situation and incontinence were not truly reflected by SF-36. A personal interview with a qualitative approach is likely to be a better tool.
authors.affiliation: Regional Rehabilitation Center, Queen Silvia Children's Hospital, Sahlgrenska Academy, University of Gothenburg, SE-418 04 Gothenburg, Sweden. magdalena.vuminh-arnell@vgregion.se
authors.forename: Magdalena
authors.initials: M
authors.lastname: Vu Minh Arnell
authors.forename: Katarina
authors.initials: K
authors.lastname: Seljee Svedberg
authors.forename: Birgitta
authors.initials: B
authors.lastname: Lindehall
authors.forename: Anders
authors.initials: A
authors.lastname: Möller
authors.forename: Kate
authors.initials: K
authors.lastname: Abrahamsson
mesh_terms: D000328:Adult; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D008591:Meningomyelocele / Q000453:epidemiology*; D008875:Middle Aged; D011788:Quality of Life; D013548:Sweden / Q000453:epidemiology; D014549:Urinary Incontinence / Q000453:epidemiology*
keywords: Adults; HRQoL; Incontinence; Life situation; Myelomeningocele; SF-36