50 Years and older – born with spina bifida: participation, health issues and physical function

Abstract

Purpose: To study physical function perspectives in persons with spina bifida (SB) aged ≥50 years. In relation to this, we also wanted to survey participation perspectives, health issues and health services usage.

Methods: We used predefined fixed questions to interview community-dwelling adults with SB in Norway. Physical function assessments included Timed Up and Go, the Six Minute Walk Test, and BMI was calculated. Descriptive statistics were used, and logistic regression was performed to study variables associated with community walking.

Results: Eighteen women and twelve men, twenty-four of them without hydrocephalus, participated in the study. Their mean age was 57.5 years (range 51–76). The majority were well-functioning persons, with 53% employed. However, deterioration in ambulation started at a median age of 40 years in >80% of the participants. Higher odds for being a community walker were found for sacral SB, BMI < 30, and/or being more physical active per week. More than 60% of the study sample used antihypertensive medication, and 43% were obese (BMI ≥ 30). Pain was a commonly perceived health problem. About 50% had been through a comprehensive SB-specific health evaluation in adulthood.

Conclusion: The striking results on obesity, hypertension, pain and deterioration in ambulatory function in middle-aged and elderly SB cases call for action. Our findings elucidate the importance of prevention and clinical follow-up throughout the lifespan, even in well-functioning SB cases.

Implications for rehabilitation

• Weight-management and interventions to reduce hypertension are issues that need attention in follow-up and as part of secondary rehabilitation in spina bifida.

• Early deterioration in ambulatory function and pain in spina bifida are target areas for multidisciplinary secondary rehabilitation, and should adequately focus on maintaining or improving “real-life” functioning performance.

• Neurogenic bowel and fecal incontinence are important in relation to social participation in ageing spina bifida.

• Rehabilitation programs and research should take the level of cele and hydrocephalus into account.

Keywords:

• Spina bifida
• ageing
• physical function
• adult
• participation

Acknowledgements

We want to thank The Norwegian Association for Spina Bifida and Hydrocephalus, especially our reference group, and our expert colleagues for advices during the planning of the study. We are most grateful to the participants who willingly shared their information. We also want to thank Kjersti Vardeberg and Jan Erik Wilhelmsen at the TRS resource center for rare disorders, Sunnaas rehabilitation hospital, for reading and commenting on our manuscript.

Disclosure statement

The authors declare to have no conflict of interest.