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

Abstract

AIM To advance understanding of the interrelationships of sex, level of lesion (LOL), self-management, community integration (employment, independent living), and quality of life (QOL) in young adults with myelomeningocele.METHOD A multicenter convenience sample of 50 individuals with myelomeningocele, 18 to 25 years of age (mean age 21y 5mo, SD 2y), participated in a structured clinical interview on selfmanagement (Adolescent Self-Management and Independence Scale II [AMIS II]) and completed a self-report questionnaire comprising standardized measures. QOL was assessed using the World Health Organization Quality of Life (WHOQOL)-BREF instrument. A chart review yielded clinical data.RESULTS Most participants were Caucasian (78%), female (56%: 28 females, 22 males), unemployed (58%), and in supervised living environments (74%). Eighty per cent had a history of hydrocephalus requiring shunt placement. A lumbar LOL was most frequently reported (64%), followed by a sacral LOL (22%), and thoracic LOL (7%). Males were more likely to report employment (p=0.008), but females had greater success in transitioning into independent living settings (p=0.015). LOL was a significant predictor of specific dimensions of self-management, employment, and QOL (p < 0.05). Mean scores on the AMIS II reflected deficits in condition management activities and tasks of everyday life. Limited QOL was also observed. INTERPRETATIONThe overall low rates of employment and independent living suggest that individuals with myelomeningocele are experiencing great difficulty in achieving these milestones of emerging adulthood, regardless of sex. Limited success in developing self-management skills and restricted QOL also highlight vulnerability in this population.Improved health interventions have increased the survival rate of young people born with myelomeningocele over the past three decades, with data suggesting the vast majority of affected individuals can be expected to survive long into adulthood. 1 Less progress has been made to support their psychosocial functioning as these individuals transition from adolescence into young adulthood.2 However, a range of medical (e.g. muscle weakness and paralysis, bladder and bowel dysfunction, orthopedic abnormalities), 3 neurocognitive, 4 and social deficits present challenges to completing the developmental outcomes associated with early adulthood including self-management and community integration.5 These health and social difficulties also place them at risk for psychological distress 6 and poor quality of life (QOL). 7 Consequently, young adulthood is regarded as a critical period of developmental change. 8For young adults with myelomeningocele, self-management of condition-specific tasks, such as medication ordering ⁄ administration and clean intermittent self-catheterization, as well as more general activities of daily living, are considered to be essential skills for community integration and have been associated with higher QOL ratings.9 However, research suggests that independence in these t...

Outcome and life satisfaction of adults with myelomeningocele

“…While these data are informative, these studies are not readily transferrable to adults with MMC. Adolescents and young adults may not have had adequate time to achieve life goals, have less medical complications and better preserved mobility than adults [3,6,12,14,19–22]. Impairments in body structure and functions such as scoliosis, renal damage and pressure sores often worsen with age and the likelihood of independent mobility decreases, which may reduce the ability of adults to actively participate in society [23–25].…”

“…As individuals with MMC reach adulthood, they face challenges in attaining milestones commonly used to indicate positive outcomes, such as obtaining postsecondary education, employment, living independently and forming partner relationships [14,26]. Previous research indicates that a reduced number of young adults with MMC pursue postsecondary or graduate education [7,11,13,20,27].…”

“…Previous research indicates that a reduced number of young adults with MMC pursue postsecondary or graduate education [7,11,13,20,27]. Individuals with MMC also have significantly higher unemployment rates than the general population and those who are employed tend to hold low-wage jobs [4,6,7,13,14,17,20,28,29]. …”

“…However, research has shown that the majority of individuals with MMC require some form of living assistance, have difficulty forming romantic relationships and have low rates of marriage [4,6,7,13,14,16,19,28,30,31]. Though the majority of women with MMC do not have children, there is no evidence suggesting decreased fertility in this population [4,6,20,31,32].…”

“…However, certain aspects such as finances, self-care ability and partner relationships are often reported to be less satisfying [12,15,19,23]. Unfortunately, life satisfaction research on adults with MMC is minimal, which leads to unclear expectations for the future [14,39]. …”