Health-related quality of life is compromised in individuals with spina bifida: results from qualitative and quantitative studies

Rofail, Diana; Maguire, Laura; Kissner, Marion; Colligs, Antje; Abetz-Webb, Linda

doi:10.1016/j.ejogrb.2014.07.048

Cited by 16 publications

(11 citation statements)

References 84 publications

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“…There are two reviews of studies on the HRQOL in both paediatric and adult patients with spina bifida (SB) (Sawin & Bellin ; Rofail et al ), but none of them meet the minimum requirements for systematic reviews. In the first review, the HRQOL findings as well as clinical and psychosocial determinants of HRQOL in SB have been meticulously described.…”

Section: Introductionmentioning

confidence: 99%

“…Second, more recent review of studies published before 2011 explored results from qualitative and quantitative studies regarding the HRQOL of SB patients and compared results with national norms. This review did not provide summary of determinants of HRQOL as well as interventions that address HRQOL in SB (Rofail et al ). Both reviews did not ascertain the methodological quality of included studies, making it difficult to interpret and compare results.…”

Section: Introductionmentioning

confidence: 99%

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Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

Bakanienė

Prasauskienė

Vaičienė-Magistris

2016

Child

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Myelomeningocele (MMC) is the most complex congenital birth defect compatible with life. To provide the best health care for children with MMC, clinicians and researchers have to understand health and functional status of their patients as well as factors influencing their quality of life (QOL). The objective is to review studies that assess health-related quality of life (HRQOL) and determinants of HRQOL in children with MMC. The data sources include MEDLINE, along with reference lists of relevant reviews and included articles. Study eligibility criteria are quantitative studies that assess HRQOL using validated HRQOL instrument. Participants include children aged 0-18 years with diagnosis of MMC or spina bifida. Risk of bias was assessed using the Hayden system for non-randomized studies. Narrative synthesis and tables of results of HRQOL studies were conducted. Children with MMC have decreased HRQOL compared with normative population. Physical HRQOL is the most exposed aspect of QOL, while discrepancies in psychosocial domains vary by study. Many determinants of QOL have been found, and it is still not clear which determinant can be described as the strongest predictor. Psychosocial factors are the most consistent determinants of HRQOL.Heterogeneous study sample size, study designs, determinant and outcomes measures limited synthesis of findings. The HRQOL in children with MMC is complex and mediated by a number of associated medical problems, together with a variety of psychosocial and environmental factors. Future research is needed (a) on the relation between complex medical problems, functional independence, parent's and clinician's expectation and HRQOL in children and (b) to assess the differences in HRQOL by social environment and healthcare system.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

Bakanienė

Prasauskienė

Vaičienė-Magistris

2016

Child

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“…Anorectal complaints are common since 85% of patients are constipated and 70% have FI . These disorders severely impact their quality of life, especially FI …”

Section: Introductionmentioning

confidence: 99%

“…6 These disorders severely impact their quality of life, especially FI. 7 The singularities of SB patients are as follows: (i) disorders are often largely described in the pediatric population but their natural history over time is under reported; (ii) these patients commonly have multiple pelvic floor disorders, especially urinary, all contributing to quality of life impairment; (iii) the therapeutic target is difficult to define because their disorders are often severe and complex, with a broad spectrum of symptoms; and (iv) therapeutic trials are difficult to conduct as for any rare disease.…”

Section: Introductionmentioning

confidence: 99%

Defecation disorders in Spina Bifida: Realistic goals and best therapeutic approaches

Brochard

Peyronnet

Hascoët

et al. 2018

Neurourology and Urodynamics

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Aims Spina Bifida (SB) is a rare congenital condition that frequently impairs the neurological control of both fecal continence and defecation. Several therapeutic strategies have been proposed but impact assessment is lacking. Our objectives were to quantify the symptomatic improvement and to determine the optimal strategy in this rare condition where randomized controlled trials are difficult to conduct. Methods Data were extracted from a prospective database. The present analysis focused on patients having undergone at least two gastroenterological assessments. A standardized therapeutic approach was used from the first visit. Improvement was quantified by the variation of quantified symptomatic scores. Results The data of of 57 adults with SB (gender F/M: 30/27 [52.6/47.4%]; mean age: 33.8 [18.5] years) were extracted. After a mean follow‐up of 46 months, 23/57 patients (40.4%) had at least improvement of one point of the Cleveland Clinic Incontinence score (CCIS); 13/57 (22.8%) reported a significant improvement of continence (delta score >50%). Five of the twelve patients (41.6%) with CCIS < 5 at baseline became incontinent over time. The neurological level was not associated with a worse continence outcome. Work on stool consistency and transanal irrigation were the most useful strategies in those with significant improvement of continence. Conclusions Using conventional strategies, a benefit on fecal continence occurs in only one out of five patients suffering from Spina Bifida and continent patients at baseline can develop fecal incontinence over time. A strategy targeting improved control of defecation (transanal irrigation) and a standardization of follow‐up protocol might be beneficial.

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“…Spina bifida is the most prevalent major birth malformation with an incidence of 4:1000 to 5:1000 in the USA and 8.16:10,000 newborns in Europe . The meningomyelocele (MMC) is the most frequent form of spina bifida, characterized by the extrusion of the spinal cord and/or nerves through a bony defect of the spine . Despite not be a nonlethal condition with 85% of children surviving into adulthood , these individuals present several morbidities such as paralysis of the lower limbs and bladder dysfunctions.…”

Section: Introductionmentioning

confidence: 99%

Outcomes of infants followed‐up at least 12 months after fetal open and endoscopic surgery for meningomyelocele: a systematic review and meta‐analysis

Júnior

Tonni

Martins³

2016

J Evidence Based Medicine

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Health-related quality of life is compromised in individuals with spina bifida: results from qualitative and quantitative studies

Cited by 16 publications

References 84 publications

Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

Health‐related quality of life in children with myelomeningocele: a systematic review of the literature

Defecation disorders in Spina Bifida: Realistic goals and best therapeutic approaches

Outcomes of infants followed‐up at least 12 months after fetal open and endoscopic surgery for meningomyelocele: a systematic review and meta‐analysis

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