Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida.

Spina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The aim of this study was to describe the establishment of linguistic, content and face validity of the Swedish version of a Quality-of-Life Assessment for children (QUALAS-C, n = 10 items), teenagers (QUALAS-T, n = 10 items) and adults with spina bifida (QUALAS-A, n = 15 items) based on the original US English versions. The process included close collaboration with the original instrument developer and complied with international standards on patient-reported outcome measurements. The procedure includes forward translation, expert and patient/parent review and reconciliation, back translation, back translation review and cognitive debriefing interviews with 16 people with spina bifida aged 8 to 33, providing them with the possibility of evaluating the clarity, adequacy, and comprehensiveness of QUALAS-C, QUALAS-T and QUALAS-A, respectively. The interviews lasted a median of 15 min (range 8-16) for QUALAS-C, 10 min (range 9-15) for QUALAS-T and 24 min (range 9-38) for QUALAS-A. Four main issues/topics needed attention and discussion after both the forward and back translation. Following the back translation review, all issues were resolved. The patient feedback revealed recognition of the HRQoL issues included in QUALAS, and also difficulties in understanding some questions. After the patients' evaluation, four items were reworded for clarity. No study participant reported a wish to add to or remove questions from QUALAS. Hence, the Swedish versions of QUALAS became conceptually equivalent to the original US English versions and achieved linguistic, content and face validity. While empowering the voices of people with spina bifida, these results also enable their HRQoL to be properly assessed in research and clinical care in Sweden and in international studies.

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

AIM: To evaluate health-related quality of life (HRQoL) in adults with myelomeningocele (MMC) measured by SF-36. MATERIALS AND 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. CONCLUSION: 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.

Adults with myelomeningocele: an interview study about life situation and bladder and bowel management.

AIM: To assess life situation, and bladder and bowel management in individuals with myelomeningocele (MMC) after transferal to adult medical care. MATERIALS AND METHODS: All individuals (134) with myelomeningocele from western Sweden, born before 1981, and assessed on at least two occasions by a pediatric urologist, were invited to participate in a telephone interview according to a structured protocol. Sixty-nine individuals (32 males, 37 females) with a median age of 34 years (range 27-50) agreed to participate. RESULTS: Sixty-two individuals (90%) passed high school or had university education and 46 (67%) were employed. Fifty-three (77%) had their own apartment and 27 (39%) lived with a partner. Clean intermittent catheterization was used by 49 (71%), more commonly in females (p < 0.05). Pads were used by 60 (87%) individuals. Ten (14%) had urotherapy support. Of those operated on, 16 (53%) had a consultation with a urologist every 3 years; the corresponding number for the non-operated was 12 (31%). Eight individuals were treated with anticholinergic drugs. None had support for improvement of the fecal emptying regimen. CONCLUSIONS: Of the participants in the study, one third had no or rare contact with a urologist, few had urotherapy support and none had support for bowel regimen.