The aim of this study was to examine the prevalence of secondary impairments in young adults with spina bifida and to relate the prevalence to the type of spina bifida and the level of lesion. This cross-sectional study is part of the ASPINE (Adolescents with Spina Bifida in the Netherlands) study. Data were collected on medical history, hydrocephalus (shunt: yes/no), neurological level of lesion (International Standards for Neurological and Functional Classification of Spinal Cord Injury), visual acuity (Landolt rings), spasticity (Modified Ashworth Scale), contractures (range of motion), scoliosis (deviation from perpendicular), ambulation (Hoffer criteria), pressure sores and blood pressure (physical examination), epilepsy, pain, incontinence and sexuality (questionnaire), and cognitive functioning (Raven Standard Progressive Matrices). In total, 179 patients with spina bifida participated (41% male, age range 16 to 25 years, mean 20 years 9 months, SD 2 years 11 months). These were 37 patients with spina bifida occulta, 119 patients with spina bifida aperta and hydrocephalus (AHC+) and 23 patients with spina bifida aperta without hydrocephalus (AHC-). Of our patient group, 73 had a high-level lesion (L2 and above), 68 a mid-level lesion (L3 to L5), and 38 a low-level lesion (S1 and below). Both subdivisions were strongly related with patients with higher lesions more often having hydrocephalus. Most secondary impairments were found for patients with AHC+, and patients with AHC- were mostly comparable to patients with spina bifida occulta. According to level of lesion, most medical problems were found in the high-level lesion group. However, all subgroups suffered from health problems.

PurposeTo facilitate family doctor-driven follow-up for adult childhood cancer survivors, we developed a survivor care plan (SCP) for adult survivors and their family doctors.MethodsThe SCP was accessible for survivors and their family doctors on a secure website and as a printed booklet. It included data on diagnosis, treatment and potential risks as well as recommendations for follow-up. Childhood cancer survivors who were off-treatment ≥5 years, aged ≥18 years and not involved in a long-term follow-up program were eligible. They were advised to visit their family doctor. The endpoints were numbers of participants, adherence of family doctors to the guidelines and satisfaction ratings.ResultsThe eligibility criteria were fulfilled by 108 survivors. Three family doctors and 15 survivors refused, 10 survivors were non-responders. Of the remaining 80 survivors, 73 survivors visited 72 family doctors. Sixty-nine (96%) family doctors returned data of whom 60 (83%) fully adhered to the recommended tests. The majority of survivors and family doctors were satisfied about the SCP.ConclusionsA (web-based) SCP for survivors and family doctors can serve as an effective communication vehicle to provide adequate shared care by the long-term follow-up clinic and family doctors.

Study design: Cross-sectional study. Objectives: To study the prevalence of incontinence, problem perception and determinants of urinary and faecal incontinence in young adults with spina bifida. Setting: Nation-wide study in the Netherlands. Participants: A total of 179 of 350 invited patients participated, including 37 patients with spina bifida occulta and 142 with spina bifida aperta, of whom 119 had hydrocephalus; 41% were male and mean age was 20.4 (range 16-25 years). Methods: Data were collected from interviews, physical examination, neuropsychological tests and medical records. Results: Urinary and faecal incontinence was common in young adults with spina bifida (60.9 and 34.1%, respectively), regardless of the bladder and bowel management they used. The majority of urinary and faecal incontinent patients perceived this as a problem (69.7 and 77.0%, respectively). Spina bifida aperta, hydrocephalus and a level of lesion of L5 or above were associated with patients suffering from urinary and/or faecal incontinence. Predictors of perceiving urinary incontinence as a problem were, in addition to being incontinent, not having hydrocephalus and having a level of lesion of L5 or above. The only predictor of perceiving faecal incontinence as a problem was the frequency of incontinence. Conclusion: A majority of young adults with spina bifida suffer from urinary and faecal incontinence and most of them perceive their incontinence as a problem. Therefore, further efforts are important to improve urinary and faecal continence.

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Knowledge about the level of functional independence that can be expected in adulthood might support decisions on the treatment of newborn infants with spina bifida. This study determined functional independence among young adults with spina bifida and its relationships with pathological characteristics known from birth (hydrocephalus and level of lesion). Data were collected from medical records and by physical examination. Functional independence was assessed on six domains (self-care, sphincter control, transfers, locomotion, communication, and social cognition) using the Functional Independence Measure (FIM). Participants were 165 patients with spina bifida (69 males, 96 females; age range 16 to 25y, mean 20y 9mo [SD 2.9]; 117 with hydrocephalus). Patients without hydrocephalus were independent for all FIM domains except sphincter control, as were patients with hydrocephalus with a lesion level below L2. Most patients with hydrocephalus and a lesion at L2 or above were dependent as regards sphincter control (98%), locomotion (79%), and self-care (54%), and quite a few needed support in transfers (38%), social cognition (29%), and communication (15%).

The cognitive status of 168 Dutch young adults (103 females, 65 males; mean age 20 years 9 months, age range 16 to 25 years) with spina bifida (SB) was examined. The main purpose was to establish the effect of the type of SB (occulta or aperta) and the effect of hydrocephalus (HC) within the group with SB aperta (AHC+). Results indicated, on average, a lower cognitive status of persons with AHC+ (n=111) than of persons with SB occulta (n=37) and of persons with SB aperta without HC (AHC-; n=20). Almost half the young adults with AHC+ had cognitive impairments of some sort. These included more domain specific impairments (70%) as well as a more general cognitive deficit (30%). Cognitive status of persons with SB occulta and of those with AHC- was similar to that in the healthy population. The presence of associated pathology, rather than SB per se, has a negative effect on cognitive status.

This study concerns life satisfaction and its determinants in Dutch young adults with spina bifida (SB). Data on life satisfaction (Life Satisfaction Questionnaire ) were related to hydrocephalus, lesion level, disabilities, and demographic variables. In total, 179 young adults with SB participated (41% male, age range 16-25y; 79% SB aperta, 67% hydrocephalus [HC], 39% wheelchair-dependent). Most were satisfied with their life as a whole (24% dissatisfied). No difference was found from a population reference group (28% dissatisfied). Highest proportions of dissatisfaction were found for financial situation (44%), partnership relations (49%), and sex life (55%). Least dissatisfaction was found for contact with friends (17%) and families (15%). Young adults with SB and HC were more satisfied with their financial situation and family life but were less satisfied with self-care ability and partnership relations than those without HC and the reference group. However, except for self-care ability, relationships between life satisfaction and having SB were weak. In conclusion, self-care ability and partnership relations were rated least favourable and may need more attention from care providers. Overall, SB does not seem to be an important determinant of life satisfaction.Spina bifida (SB) is a congenital condition that may result in a wide variety of physical and cognitive limitations. 1-7 After the initial hazardous years, the survival rate for a person with SB is near normal, 8,9 although hydrocephalus (HC), bladder management, and kidney-sparing always remain an issue. 7,9 Several authors have proposed that chronic conditions such as SB confront youngsters with additional barriers in the transition from adolescence to adulthood compared with their typically developing peers. 10-12 They may find themselves, for example, disadvantaged with regard to career opportunities or finding a partner. Better insight into the quality of life (QoL) of young adults with SB might identify support needs and might, thereby, provide a basis for improving the support system. Knowledge of the QoL of persons with SB is also relevant with regard to today's policies of aborting pregnancies early in gestation, the use of new operation techniques such as in utero closure of the neural tube, 13 and deciding whether or not to treat early after birth. Such decisions by medical professionals are based on, among other considerations, the expected long-term QoL of the patients involved. However, professionals tend to rate the QoL of their patients much lower than the patients themselves do. 14 Only limited research into the QoL of persons born with SB is available, and the results are equivocal. Some authors 15 found that the healthrelated QoL of their study population was below normal, whereas others concluded that QoL was good 10 and comparable to that of persons without SB. 11,16 QoL is a notion with a rather broad meaning, but it is usually associated with well-being or life satisfaction. 17 Defining life satisfaction as an element of QoL, ra...

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...