Prevalence of parenthood in wheelchair-dependent persons with long-term spinal cord injury in the Netherlands.

STUDY DESIGN: Multicenter  cross-sectional study. OBJECTIVES: To determine the prevalence of parenthood in long-term wheelchair-dependent persons who sustained a spinal cord injury (SCI) during their reproductive years. Secondary aims were to (1) explore patient-specific and disease-related factors associated with parenthood after SCI; and (2) quantify fertility aids used by men with SCI. SETTING: Eight specialized SCI rehabilitation centers in the Netherlands. METHODS: Questionnaires and physical examination were applied in 255 persons with SCI. Prevalence rates of parenthood among the general Dutch population were used for comparison. Logistic regression analyses were used to explore factors associated with parenthood after SCI. RESULTS: Prevalence of parenthood in SCI was 50% in men and 45% in women, which was significantly (P < 0.05) lower than rates in the general population (74% in men and 81% in women). Among the parents with SCI, most (66% of males and 72% of females) of them had children after SCI. Parenting children after SCI was associated with partnership (OR = 14.5, P < .001 [men]; OR = 3.7, P = .05 [women]), normal micturition (OR = 4.9, P = .02 [men]), incomplete lesion (OR = 5.4, P = .03 [women]), and paraplegia (OR = 7.3, P = .02 [women]). The most frequently used methods for ejaculation and fertilization were electroejaculation (29%) and intracytoplasmatic sperm injection (23%). CONCLUSIONS: Prevalence of parenthood in SCI persons is low. However, half of the persons with SCI do become parents, with most doing so following SCI. Demographic and disease-related factors may contribute to this.

Associations between disability-management self-efficacy, participation and life satisfaction in people with long-standing spinal cord injury.

OBJECTIVES: To study disability-management self-efficacy (DMSE) and its correlates in a large sample of Dutch people with long-standing spinal cord injury (SCI). DMSE is the confidence that people with SCI may have in their ability to manage the consequences of their condition with respect to the various domains in their life. Research questions were: (1) What is the level of DMSE in Dutch people with long-standing SCI?; (2) Is DMSE associated with demographic and lesion characteristics?; and (3) Is DMSE associated with participation and life satisfaction if these associations are adjusted for demographic and lesion characteristics and mood? METHODS: Eligible people were identified from all eight rehabilitation centers with a specialty in SCI rehabilitation in the Netherlands (N=261). Data were collected using a self-report questionnaire. DMSE was measured using the University of Washington Self-Efficacy Scale-Short Form (UW-SES-6). Correlation and linear regression analyses were used. RESULTS: Levels of UW-SES-6 scores were largely independent of demographic and lesion characteristics. UW-SES-6 scores were bivariately moderately to strongly associated with mood (0.47), participation (0.39-0.51) and life satisfaction (0.46). In the regression analyses, UW-SES-6 scores still explained a significant amount of variance of participation (standardized ß 0.31-0.33) and life satisfaction (standardized ß 0.21) when controlling for demographic and lesion characteristics and mood, and explained an additional 3.2-8.1% of the variance of participation and life satisfaction. CONCLUSION: DMSE is a psychological resource associated with higher levels of participation and life satisfaction after SCI. The UW-SES-6 is a brief and easy to use measure of this psychological resource.

Good validity of the international spinal cord injury quality of life basic data set.

STUDY DESIGN: Cross-sectional validation study. OBJECTIVES: To examine the construct and concurrent validity of the International Spinal Cord Injury (SCI) Quality of Life (QoL) Basic Data Set. SETTING: Dutch community. PARTICIPANTS: People 28-65 years of age, who obtained their SCI between 18 and 35 years of age, were at least 10 years post SCI and were wheelchair users in daily life. MEASURE(S): The International SCI QoL Basic Data Set consists of three single items on satisfaction with life as a whole, physical health and psychological health (0=complete dissatisfaction; 10=complete satisfaction). Reference measures were the Mental Health Inventory-5 and three items of the World Health Organization Quality of Life measure. RESULTS: Data of 261 participants were available. Mean time after SCI was 24.1 years (s.d. 9.1); 90.4% had a traumatic SCI, 81.5% a motor complete SCI and 40% had tetraplegia. Mean age was 47.9 years (s.d. 8.8) and 73.2% were male. Mean scores were 6.9 (s.d. 1.9) for general QoL, 5.8 (s.d. 2.2) for physical health and 7.1 (s.d. 1.9) for psychological health. No floor or ceiling effects were found. Strong inter-correlations (0.48-0.71) were found between the items, and Cronbach's alpha of the scale was good (0.81). Correlations with the reference measures showed the strongest correlations between the WHOQOL general satisfaction item and general QoL (0.64), the WHOQOL health and daily activities items and physical health (0.69 and 0.60) and the Mental Health Inventory-5 and psychological health (0.70). CONCLUSIONS: This first validity study of the International SCI QoL Basic Data Set shows that it appears valid for persons with SCI.