Gaps and Opportunities: An Agenda for Further Research, Services, and Program Development in Spina Bifida

Sawin, Kathleen J.; Betz, Cecily Lynn; Linroth, Ronna

doi:10.1016/j.pcl.2010.07.020

Cited by 9 publications

(4 citation statements)

References 43 publications

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“…Health disparities research suggests that among some specific racial/ethnic groups, inferior health status may be explained partly by divergent SDH (e.g., social gradients, social exclusion, and changes in the health care system) [55]. It is also acknowledged that in order to properly address gaps in providing care for patients with SB, a national research strategy must be multi-centered, longitudinal, and inclusive of ethnic and socioeconomic diversity [56]. Promisingly, investigators have also begun to recognize existing disparities through the use of the National Spina Bifida Patient Registry (NS-BPR) -a partnership between the CDC and SB clinics throughout the US.…”

Section: Discussionmentioning

confidence: 99%

Language and Latino immigrants living with spina bifida: Social determinants of health – the missing dimension in quality of life research

Castillo

Gandy

Bradko

et al. 2019

PRM

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PURPOSE: Aware of the higher birth prevalence of spina bifida (SB) among Hispanics/Latinos, we aimed to appraise the literature as it relates to cultural context through a review of quality of life (QOL) studies conducted among individuals with SB in order to improve care among immigrant families. METHODS: A systematic review was conducted consistent with the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines. The inclusion criteria were: (1) children and adolescents (5-21 years of age) with SB and/or myelomeningocele; (2) quantitative studies; (3) health-related QOL outcome measured by validated instrument determinants; and (4) US-based studies. Articles meeting inclusion criteria were assessed using the focused conceptual framework informing the study (i.e., social determinants of health). RESULTS: Eighteen studies met inclusion criteria, with eight different QOL instruments represented. The majority of studies used generic assessments of QOL (72%), two reported the use of both a generic and a SB-specific QOL measure (11%), and three (17%) documented QOL utilizing a SB-specific validated instrument. Only seven (39%) of the studies stated that they included Hispanics/Latinos and only six (33%) reported including Spanish-speaking individuals. CONCLUSIONS: QOL in individuals with SB is mediated by a wide-range of interrelated factors. In order to better serve this vulnerable population as they transition across the lifespan, multilingual condition-specific QOL measures need to be further developed and implemented among Hispanic/Latino individuals with SB, especially those who are recent immigrants.

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Section: Discussionmentioning

confidence: 99%

Language and Latino immigrants living with spina bifida: Social determinants of health – the missing dimension in quality of life research

Castillo

Gandy

Bradko

et al. 2019

PRM

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“…1–3 Many enter adulthood ill-prepared to manage their condition or handle issues such as sexuality and fertility. 4, 5 Pediatric genitourinary specialists with expertise in complex CGCs often view sexuality and fertility as outside the scope of their practice, while adult genitourinary specialists lack specific training on these topics within the context of CGCs. This has resulted in a crisis of care in the field: individuals with CGCs who were provided excellent, often multidisciplinary care in childhood but are at risk of receiving suboptimal urologic care in adulthood.…”

Section: Introductionmentioning

confidence: 99%

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases

Hsieh

Wood

Dicianno

et al. 2017

Urology

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Over the last five decades, healthcare advances have yielded quantum improvements in life expectancy for individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related healthcare issues, while adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This manuscript outlines identified research needs.

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“…Although organizations (American Academy of Pediatrics, ; American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, and Transitions Clinical Report Authoring Group, ) and individuals (Geenen, Powers & Sells, ; Patterson & Lanier, ; Reiss, Gibson & Walker, ) have identified potentially important components and barriers of a transition program (American Academy of Pediatrics, ; Boyle, Farukhi & Nosky, ; Flume, Taylor, Anderson, Gray & Turner, ; Giarelli, Bernhardt, Mack & Pyeritz, ), few have been developed. When transition programs are developed, few HCP systematically evaluate the process and outcomes of the transition to adult health care (McLaughlin et al., ; Sawin, Betz & Linroth, ). Additionally, even fewer evaluate AYAs and their family's needs and opinions related to transition to adulthood (Betz, ; Betz et al., ; Sawyer & Macnee, ).…”

Section: Introductionmentioning

confidence: 99%

Transitioning Adolescents and Young Adults with Spina Bifida to Adult Healthcare: Initial Findings from a Model Program

Sawin

Rauen

Bartelt

et al. 2015

Rehabilitation Nursing

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Gaps and Opportunities: An Agenda for Further Research, Services, and Program Development in Spina Bifida

Cited by 9 publications

References 43 publications

Language and Latino immigrants living with spina bifida: Social determinants of health – the missing dimension in quality of life research

Language and Latino immigrants living with spina bifida: Social determinants of health – the missing dimension in quality of life research

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases

Transitioning Adolescents and Young Adults with Spina Bifida to Adult Healthcare: Initial Findings from a Model Program

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