Health-related quality of life compared to life situation and incontinence in adults with myelomeningocele: Is SF-36 a reliable tool?

AimTo evaluate health-related quality of life (HRQoL) in adults with myelomeningocele (MMC) measured by SF-36.Materials and methodsAll 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).ResultsThe 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.ConclusionOur 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.