Journal of Pediatric Rehabilitation Medicine - Volume 13, issue 4

Authors: Beierwaltes, Patricia | Munoz, Sharon | Wilhelmy, Jennifer

Article Type: Review Article

Abstract: PURPOSE: Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics that participate in the National Spina Bifida Patient Registry reported that 26% of individuals had a history of pressure injuries with 19% having had one in the past year. The spina bifida community lack direct guidelines on prevention of these and other skin related issues. The Integument (skin) Guidelines focus on prevention, not treatment, of existing problems. METHODS: Using a consensus building methodology, the guidelines were written by experts …in spina bifida and wound care. RESULTS: The guidelines include age-grouped, evidence-based guidelines written in the context of an understanding of the whole person. They are presented in table format according to the age of the person with spina bifida. CONCLUSION: These guidelines present a standardized approach to prevention of skin-related issues in spina bifida. Discovering what results in successful minimization of skin-related issues with testing of technology or prevention strategies is the next step in protecting this vulnerable population. Show more

Keywords: Spina bifida, skin integrity, pressure injury, pressure ulcer, prevention

DOI: 10.3233/PRM-200723

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 543-548, 2020

Authors: O’Neil, Joseph | Fuqua, John S.

Article Type: Review Article

Abstract: It is estimated that a significant percentage of individuals with spina bifida (SB) are shorter than their age-matched typical peers. Parents of children with spina bifida may ask if human growth hormone is appropriate for their child. This article discusses short stature and the use of human growth hormone among children with SB. This guideline was developed for SB Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.

Keywords: Spina bifida, short stature, human growth hormone, obesity, myelomeningocele, neural tube defects

DOI: 10.3233/PRM-200710

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 549-555, 2020

Authors: Almutlaq, Nourah | O’Neil, Joseph | Fuqua, John S.

Article Type: Review Article

Abstract: Children with spina bifida are at greater risk of developing central precocious puberty (CPP) compared to others. Therefore, early recognition and timely referral for further evaluation by a pediatric endocrinologist allows appropriate management that reduces the impact of CPP. This article discusses the diagnosis and management of CPP in children with spina bifida. This guideline was developed for SB Transition Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.

Keywords: Spina bifida, myelomeningocele, neural tube defects, precocious puberty, GnRH analog

DOI: 10.3233/PRM-200728

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 557-563, 2020

Authors: Sawin, Kathleen J. | Brei, Timothy J. | Houtrow, Amy J.

Article Type: Review Article

Abstract: Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL Guidelines was to summarize the evidence and expert opinions on how to mitigate factors that negatively impact QOL/HRQOL or enhance the factors positively related to QOL/HRQOL, the measurement of QOL/HRQOL and the gaps that need to be addressed in future research.

Keywords: Myelomeningocele, spina bifida, pain, continence, quality of life, health-related quality of life, neural tube defects

DOI: 10.3233/PRM-200732

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 565-582, 2020

Authors: Logan, Lynne Romeiser | Sawin, Kathleen J. | Bellin, Melissa H. | Brei, Timothy | Woodward, Jason

Article Type: Review Article

Abstract: Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2–5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article …are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan. Show more

Keywords: Myelomeningocele, spina bifida, self-management, independence, guidelines, neural tube defects

DOI: 10.3233/PRM-200734

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 583-600, 2020

Authors: Meneses, Veronica | Parenti, Sarah | Burns, Heather | Adams, Richard

Article Type: Review Article

Abstract: An estimated 85% of individuals with spina bifida (SB) survive into adulthood, warranting SB-specific transition to adult healthcare guidelines to address the diverse and complex medical, adaptive, and social needs particular to this condition. Latex allergy constitutes one important health concern for this population that requires ongoing and life-long evidence-based management. This article discusses management of latex allergy according to the SB Latex Allergy Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida, reviews current care models in which such latex allergy guidelines can be implemented, and explores …further relevant research topics in SB care relative to latex allergy. Show more

Keywords: Myelomeningocele, allergy, spina bifida, latex, latex allergy, Hevea latex, latex-fruit syndrome, neural tube defects

DOI: 10.3233/PRM-200741

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 601-609, 2020

Authors: Houtrow, Amy | Roland, Michele

Article Type: Review Article

Abstract: Sexual development is not only comprised of the changes to a person’s body during puberty; it is a part of social development and should be considered in the context of basic and routine human desires for connectedness and intimacy, beliefs, values and aspirations. As is true for everyone, it is important that individuals with spina bifida have opportunities to acquire developmentally appropriate, relevant and accurate sexual health knowledge. Those with spina bifida need to be able to negotiate sexual desire, intimacy and sexual expression. They also need education about their sexual health and how to limit the negative outcomes of …sexual activity related to sexually transmitted infections, unplanned pregnancy or sexual coercion, violence, abuse or exploitation. This article discusses the Spina Bifida Sexual Health and Education Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida using the World Health Organization’s framing of sexual health and reviews the literature on sexual health and education for individuals with spina bifida. Show more

Keywords: Spina bifida, myelomeningocele, neural tube defects, sexuality, sex education, sexual health

DOI: 10.3233/PRM-200743

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 611-619, 2020

Authors: Wilson, Pamela E. | Mukherjee, Shubhra

Article Type: Review Article

Abstract: The Spina Bifida Association (SBA) is the organization that represents the needs of the population with spina bifida (SB). They are tasked with advocacy, education, optimizing care, and providing a social voice for those with spina bifida. In response to the tenet of optimizing care they were tasked with developing up to date clinical care guidelines which address health care needs for those impacted by spina bifida throughout their lifespan. This article will discuss the SB Mobility Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.

Keywords: Myelomeningocele, spina bifida, neural tube defects, mobility

DOI: 10.3233/PRM-200744

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 621-627, 2020

Authors: Conklin, Michael J. | Kishan, Shyam | Nanayakkara, Chanka B. | Rosenfeld, Samuel R.

Article Type: Review Article

Abstract: Orthopedic or musculoskeletal problems are common in individuals with spina bifida. They can affect function and mobility and, in the case of spinal deformity, affect pulmonary function. We discuss the current treatment guidelines developed through collaboration with the Spina Bifida Association and the Orthopedics and Mobility working group using a specific methodology previously reported [1,2]. General considerations are discussed followed by evaluation and treatment guidelines for specific age ranges. References are provided where applicable, but where data is lacking treatment guidelines fall under the umbrella of clinical consensus. This leaves “research gaps” where areas of possible future study could be …considered. Show more

Keywords: Spina bifida, myelomeningocele, neural tube defects, healthcare guidelines, scoliosis, kyphosis

DOI: 10.3233/PRM-200750

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 629-635, 2020

Authors: McPherson, Amy C. | Chen, Lorry | O’Neil, Joseph | Vanderbom, Kerri A.

Article Type: Review Article

Abstract: Nutritional challenges and a lack of activity can lead to health problems across the lifespan for people with spina bifida. Children and adults with spina bifida are also at greater risk of being classified as overweight or obese compared to their peers without the condition. Therefore, early recognition of nutrition problems, weight management counseling, and timely referrals for evaluation and management of diet and activity can help those with spina bifida and their families achieve a healthy lifestyle. This article details the development of the Nutrition, Metabolic Syndrome and Obesity Guidelines, which are part of the 2018 Spina Bifida Association’s …Fourth Edition of the Guidelines for the Care of People with Spina Bifida. It discusses the identification and management of poor nutrition and prevention of obesity for children, adolescents, and adults with spina bifida and highlights areas requiring further research. Show more

Keywords: Spina bifida, nutrition, obesity, guidelines, myelomeningocele, neural tube defects

DOI: 10.3233/PRM-200753

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 637-653, 2020