Perceived health in young adults with spina bifida

Abstract

The aims of this study were to compare the perceived health of young adults with spina bifida with a population without disability, and to determine the effect of the disease characteristics and resulting impairments on perceived health. This cross-sectional study is part of the Adolescents with Spina Bifida in the Netherlands study. Data were collected by physical examination and a questionnaire. In total, 179 patients (age range 16-25y) participated in the study and perceived health data were completed for 164 participants (92 females, 72 males; mean age 20y 7mo [SD 2y 9mo]). Twenty-six participants had spina bifida occulta and 138 had spina bifida aperta, of whom 115 also had hydrocephalus. Perceived health was measured with the Medical Outcome Study 36-item Short-form Health Survey (SF-36), a generic health status measure. SF-36 scores of young adults with spina bifida were below those of an agematched population group for six of the eight domains. This difference was largest for the physical functioning domain. Although these differences were statistically significant they were small. Findings for the emotional health domains (vitality, mental health, role problems due to emotional problems) did not differ at all from the population group.The life expectancy of patients with spina bifida has increased and many now live well into adulthood, which leads to new challenges. Most young adults with spina bifida face various impairments and activity limitations due to their condition, 1 which may affect their quality of life. Quality of life is a broad concept, covering aspects of health, participation, satisfaction with functioning, and general well-being. 2 Perceived health, also called self-reported health status or health-related quality of life (HRQL), covers symptoms of a disease or condition and the physical, cognitive, and social problems resulting from the symptoms. The perceived health of young adults with spina bifida is an important concept because it can help improve clinical care by describing the consequences of a disease or condition, and by improving the understanding of the impact of treatment options. 3 However, perceived health has only rarely been studied in this group; most studies have focused on physical independence and living conditions, 4,5 social relationships or vocation, 4-9 feelings of competence, 5, 6, 10 behavioural problems, 8,11,12 or well-being. 4 Parkin et al. 13 developed a specific HRQL scale for children and adolescents with spina bifida. This scale consists of 47 items in 10 domains, including physical independence, recreation, emotions, medical care, and finances. Several researchers have used the questionnaire, reporting good quality of life among young adults with spina bifida. 3,14 Unfortunately, the HRQL has only one total score for all 47 items, so that it cannot differentiate between, for example, physical independence and financial status.Health questionnaires that result in a useful profile of different aspects of health are available, but have rarely been used fo...

Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele

“…25 Furthermore, compared with their male counterparts, females with myelomeningocele have reported lower rates of employment 26,27 and decreased QOL. 28 However, until now, no study has examined sex differences in transition outcomes across multiple domains of health management and psychosocial functioning. Research on transition outcomes among young adults with myelomeningocele in the USA is particularly restricted in scope.…”

Health-related quality of life is compromised in individuals with spina bifida: results from qualitative and quantitative studies

“…No significant or meaningful differences were found for mental health and role-emotional scales [69].…”

“…There were 15 studies that used qualitative methods [9,12,[75][76][77][78][79][80][81][82][83][84][85][86][87][88]. Their findings indicated that SB affected the following aspects of patients' lives: self-image [9], feelings and emotions [75,77], social life [9,22,69,78], acceptance [9], independence [9], impact on school [75,77,85] impact on parents and siblings [9,76,[78][79][80] and concerns about the future [12,80,82,87]. In addition, patients' ability to cope with and adapt to SB has also been well documented.…”

“…Higher level of lesion, pain in the head, neck or back, and obstipation were all related to lower scores on 5 or more domains of the SF-36. Verhoef et al [69] theorised that these differences between occulta and aperta could be due to the patient's reference group. Occulta patients generally attended mainstream schools, thus comparing themselves to healthy peers.…”

Adolescents and young adults with spina bifida: psycho-pathological risks and quality of life

“…By contrast, the context in which patients live and the availability of family support are very important in determining quality of life and the degree of psycho-physical well-being achieved by patients (13)(14)(15). Verhoef et al have published several articles on the quality of life, satisfaction, independence and sexuality in Spina Bifida patients (16)(17)(18). Their latest paper of 2007 compared the self-reported health condition of young adults with Spina Bifida with that of healthy peers.…”