Emotional health and coping in spina bifida after goal management training: A randomized controlled trial.

Stubberud, Jan; Langenbahn, Donna M.; Levine, Brian; Stanghelle, Johan Kvalvik; Schanke, Anne‐Kristine

doi:10.1037/rep0000018

Cited by 24 publications

(17 citation statements)

References 92 publications

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“…(32,37,38). Furthermore, cognitive impairments are common in this patient population, with detrimental effect on their emotional health and coping ability (39). Consistent with other reports (40), many participants (almost 50%) in this study were dependent on their carers for management and support.…”

Section: Discussionsupporting

confidence: 80%

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: 80%

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]. Similar to other cohorts, many participants (almost 50%) in this study were dependent on their carers for management and support [34].…”

Section: Discussionsupporting

confidence: 78%

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

Khan¹,

Amatya²

2015

PHCOA

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“…Although few randomized clinical trials (RCTs) have been reported in any of the salient psychosocial domains (e.g. quality of life, social skills, independent decision making, depressive symptoms), a recent study found that goals management training reduced anxiety and psychological distress in a small randomized study of adults with spina bifida 195. A manualized summer camp-based intervention has also been developed that targets independence and social skills among children, adolescents, and young adults with spina bifida.…”

Section: Discussionmentioning

confidence: 99%

Spina bifida

Copp

Adzick

Chitty

et al. 2015

Nat Rev Dis Primers

551

432

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Spina bifida is a birth defect in which the vertebral column is open (bifid), often with spinal cord involvement. Clinically most significant is myelomeningocele (MMC; open spina bifida) in which the spinal neural tube fails to close during embryonic development. The exposed neural tissue degenerates in utero, resulting in neurological deficit that varies with level of the lesion. Occurring in around 1 per 1000 births worldwide, MMC is one of the commonest congenital malformations, yet its causation is largely unknown. The genetic component of MMC is estimated at 60-70% but few genes have yet been identified, despite much information from mouse models. Non-genetic risk factors include reduced folate intake, maternal anticonvulsant therapy, diabetes mellitus and obesity. Primary prevention by peri-conceptional folic acid has been demonstrated in clinical trials, leading to food fortification programmes in many countries. Prenatal diagnosis is by ultrasound enabling termination of pregnancy. Individuals who survive to birth have their lesions closed surgically, with subsequent management of associated defects, including the Chiari II malformation, hydrocephalus, and urological and orthopaedic sequelae. Fetal surgical repair of MMC has been associated with improved early neurological outcome compared with postnatal operation. MMC affects quality of life during childhood, adolescence, and into adulthood, posing a challenge for individuals, families and society as a whole.

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Emotional health and coping in spina bifida after goal management training: A randomized controlled trial.

Abstract: Overall, findings indicate that by us a compensatory intervention to manage executive dysfunction, effective and lasting benefits can be achieved with regard to aspects of perceived emotional health and coping.

Cited by 24 publications

References 92 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

Spina bifida

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