Quality of Life and Continence in Patients with Spina Bifida

Lemelle, J.L.; Guillemin, Françis; Aubert, D.; Guys, Jean Michel; Lottmann, Henri; Lortat-Jacob, S.; Mouriquand, Pierre; Ruffion, A.; Moscovici, J.; Schmitt, M.

doi:10.1007/s11136-006-0032-x

Cited by 87 publications

(78 citation statements)

References 36 publications

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“…In Table II this study many participants reported ongoing transient and/or persistent physical and psychosocial morbidity, such as bowel and/or urinary dysfunction and psychosocial issues, consistent with other published reports (32,35,36). There is evidence that urinary and faecal incontinence not only interfere with everyday life, but are also associated with poorer self-concept, self-esteem and participation (educational achievement, employment, etc.)…”

Section: Discussionsupporting

confidence: 87%

Rehabilitation outcomes in persons with spina bifida: A randomised controlled trial

Khan¹,

Amatya²,

Ng³

et al. 2015

J Rehabil Med

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Objective: To assess the effectiveness of an interdisciplinary ambulatory rehabilitation programme for persons with spina bifida in an Australian community cohort. Methods: Fifty-four participants randomized to a treatment group (n = 27) for a high-intensity rehabilitation programme (with cognitive behavioural therapy) or a control group (n = 27) comprising usual care. Outcome measures include: Disability: Urogenital Distress Inventory (UDI6), Incontinence Impact Questionnaire-7 (IIQ7), American Urological Association Symptom Index (AUA), Wexner-Faecal Incontinence Score (WFIS), Neurological Disability Scale (NDS); Participation: Depression, Anxiety Stress Scale (DASS), McGill Quality of Life (MQOL), Brief COPE Scale, Generalized Self-efficacy Scale (GSE). Assessments were made at baseline and 3-months post-intervention. Results: Adjusted for baseline disease and demographic covariates, the intervention group improved significantly at 3-month follow-up for primary and secondary outcomes, with moderate to large effect sizes (r): urinary/bowel dysfunction (AUA, UDI6, IIQ7, WFIS) (p < 0.001 for all, r = 0.4-0.7); and cognitive function: NDS "cognitive" and "mood" (p < 0.01, r = 0.6 for both); DASS "depression", "anxiety" and "stress" (p < 0.001 for all, r = 0.5-0.7); MQOL total (p = 0.013, r = 0.5), "psychological symptoms" (p < 0.001, r = 0.8); "active coping" (p = 0.035) and "self-efficacy" scores (GSE p < 0.001). No difference between groups was noted in other subscales. Conclusion: Targeted rehabilitation can improve clinical outcomes in persons with spina bifida. Further research is needed for longer-term outcomes related to "ageing" and participation restriction.

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Section: Discussionsupporting

confidence: 87%

Rehabilitation outcomes in persons with spina bifida: A randomised controlled trial

Khan¹,

Amatya²,

Ng³

et al. 2015

J Rehabil Med

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“…In this study many participants reported ongoing transient and/or persistent physical and psychosocial morbidity such as bowel and/or urinary dysfunction and psychosocial issues, consistent with other reports [28,31,32]. Further, cognitive impairments are common, with detrimental effect on their emotional health and coping ability [33].…”

Section: Discussionsupporting

confidence: 87%

“…The treatment group showed a significant reduction in bladder and bowel related disability and psychological distress, and improved QoL (and psychosocial gains) at 3-month follow-up. Participants in this study were similar to those in other studies in terms of age, gender, disease severity and treatment [26][27][28][29][30].…”

Section: Discussionsupporting

confidence: 54%

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

Khan¹,

Amatya²

2015

PHCOA

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“…[14][15][16] In contrast, research on QOL in adults with myelomeningocele has produced mixed findings (for a review, see Sawin and Bellin 17 ). Although some investigations endorse a heightened risk for poor overall and domain-specific dimensions of QOL in individuals with myelomeningocele compared with peer groups, 16,18 other studies revealed moderate to high levels of satisfaction with QOL in adolescents and young adults with myelomeningocele (see, for example, Leger 19 ) or found QOL scores within the average range. 20 Young females with myelomeningocele may be especially vulnerable to poor psychosocial outcomes owing to their double jeopardy status related to sex and disability.…”

mentioning

confidence: 99%

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

Bellin

Dicianno

Levey

et al. 2011

Developmental Medicine &Amp; Child Neurology

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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...

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Quality of Life and Continence in Patients with Spina Bifida

Cited by 87 publications

References 36 publications

Rehabilitation outcomes in persons with spina bifida: A randomised controlled trial

Rehabilitation outcomes in persons with spina bifida: A randomised controlled trial

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

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

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