scholarly journals Bowel function and care: Guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 491-498
Author(s):  
Patricia Beierwaltes ◽  
Paige Church ◽  
Tiffany Gordon ◽  
Lusine Ambartsumyan
Keyword(s):  
Spina Bifida ◽  
Bowel Function ◽  
Bowel Dysfunction ◽  
Secondary Complications ◽  
Social Opportunities ◽  
Care Guidelines ◽  
Children And Young Adults ◽  
Evidence Based Guidelines ◽  
Neurogenic Bowel

PURPOSE: Bowel dysfunction, such as constipation and fecal incontinence, has a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Secondary complications may result from bowel dysfunction and include urologic dysfunction, loss of skin integrity, shunt (hydrocephalus) function, as well as loss of social opportunities and employability. METHODS: Using a consensus building methodology, the guidelines for management of bowel dysfunction in spina bifida were written by experts in the field of spina bifida and bowel function and care. RESULTS: The evidence-based guidelines are presented in table format and provide age-specific recommendations to achieve fecal continence without constipation. Recommended treatments are presented from least to most invasive options. Literature supporting the recommendations and the interval research published to date is also presented. CONCLUSION: These guidelines present a standardized approach to management of bowel dysfunction in spina bifida. Bowel management in children and young adults with spina bifida is limited by variability in clinical practice and paucity of robust research in neurogenic bowel. Collaborative multi-institutional efforts are needed to overcome research barriers and provide innovative solutions.

scholarly journals Neurogenic bowel dysfunction

F1000Research ◽  
2019 ◽  
Vol 8 ◽  
pp. 1800 ◽  
Author(s):  
Anton Emmanuel
Keyword(s):  
Quality Of Life ◽  
Neurological Diseases ◽  
Bowel Function ◽  
Bowel Dysfunction ◽  
Laxative Use ◽  
Cord Injury ◽  
Surgical Options ◽  
Neurogenic Bowel ◽  
Monitoring Response

The symptoms of neurogenic bowel dysfunction (NBD) comprise constipation and fecal incontinence. These have a major impact on quality of life and dignity. Bowel symptoms occur in the majority of patients with chronic neurological diseases like multiple sclerosis, spinal cord injury, and Parkinson’s disease. Management relies on obtaining a careful bowel history, including assessment of bowel function prior to the onset of neurological symptoms. Objective measures of NBD are available and important in terms of monitoring response for what are often intensely personal and difficult-to-elicit symptoms. Conservative management begins by establishing an effective and regular bowel regime by optimizing diet and laxative use. If this is insufficient, as seen in about half of patients, transanal irrigation has been shown to reduce NBD symptoms and improve quality of life. Failing that, there are more invasive surgical options available. This review aims to provide practical guidance for the clinician who encounters these patients, focusing on a stepwise approach to assessment, interventions, and monitoring.

scholarly journals Evaluation and Treatment of Neurogenic Bowel Dysfunction – A Review

2016 ◽  
Vol 11 (2) ◽  
pp. 109 ◽  
Author(s):  
Lalit Kumar ◽  
Eleni Athanasakos ◽  
Anton V Emmanuel ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Neurological Disease ◽  
Bowel Dysfunction ◽  
Initial Assessment ◽  
Conservative Approach ◽  
Secondary Complications ◽  
Comprehensive Review ◽  
Neurogenic Bowel

Neurogenic bowel dysfunction is a severely troubling entity for patients with neurological disease or injury. The complex symptom cluster presents a challenge, not only for the patients but also for the treating clinician. Without intervention, patients are bound to have a reduced quality of life, and experience social impacts and secondary complications that come along with it. A careful initial assessment provides an idea of symptom severity and is crucial for successful rehabilitation. The mainstay of treatment remains a conservative approach of managing faecal incontinence or optimising the mechanics of defecation to improve patient’s quality of life. This article attempts to provide a comprehensive review of existing literature on pathophysiology, assessment and management of neurogenic bowel dysfunction.

Who is managing the bowels? A survey of clinical practice patterns in spina bifida clinics

2021 ◽  
pp. 1-5
Author(s):  
Maryellen S. Kelly ◽  
Jennifer Stout ◽  
John S. Wiener
Keyword(s):  
Spina Bifida ◽  
Nurse Practitioners ◽  
Practice Patterns ◽  
Response Rate ◽  
Bowel Dysfunction ◽  
Rehabilitation Medicine ◽  
The United States ◽  
Medical Specialties ◽  
Dissemination Of Research ◽  
Neurogenic Bowel

PURPOSE: Neurogenic bowel dysfunction (NBD) affects 80% of individuals with spina bifida. Performing and disseminating research on NBD to reach the appropriate audience is difficult given the variability among medical specialties managing NBD. This study aimed to identify which medical specialties and types of providers are currently managing NBD in the United States. METHODS: A survey was developed and sent to 75 spina bifida clinics. Surveys queried which specialty was primarily responsible for medical and surgical management of NBD and any others that assist in NBD care. The license and certification level of the providers were collected. Descriptive statistics were performed to describe the results. RESULTS: Response rate was 68%. Urology was the leading specialty primarily responsible for NBD management (39%) followed by rehabilitation medicine and developmental pediatrics (22% and 20%, respectively). Physicians were the primary providers of care followed by nurse practitioners (54% vs 31%). Urology performs 65% of NBD surgeries. CONCLUSION: Multiple specialties and providers are involved in NBD management with variation among clinics. Development of improved NBD care should include a spectrum of specialties and providers. Dissemination of research should be aimed at multiple specialty groups.

scholarly journals Integument: Guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 543-548
Author(s):  
Patricia Beierwaltes ◽  
Sharon Munoz ◽  
Jennifer Wilhelmy
Keyword(s):  
Spina Bifida ◽  
Daily Living ◽  
Wound Care ◽  
Consensus Building ◽  
Existing Problems ◽  
The Past ◽  
Whole Person ◽  
History Of ◽  
Evidence Based Guidelines

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.

The Care Triangle: Determining the Gaps in the Management of Atopic Dermatitis

2013 ◽  
Vol 17 (4) ◽  
pp. 276-282 ◽  
Author(s):  
Ashley O'Toole ◽  
Bjorn Thomas ◽  
Richard Thomas
Keyword(s):  
Atopic Dermatitis ◽  
Response To Treatment ◽  
Care Process ◽  
Evidence Based ◽  
Previous Response ◽  
Children And Young Adults ◽  
The Individual ◽  
Evidence Based Guidelines ◽  
Based Medicine

Background: Atopic dermatitis (AD) is a chronic, relapsing, intensely pruritic dermatosis that usually affects infants, children, and young adults. The treatment of AD entails an individualized regimen that depends on the age of the patient, the stage and variety of lesions present, the sites and extent of involvement, the presence of infection, and the previous response to treatment. Objectives: To identify the evidence surrounding potential strategies for closing these gaps—ultimately improving the quality of care, the care process itself, and patient outcomes—and to encourage discussions that help develop tools to bridge the gap between suggested therapy and what is done by the patient. Methods: Review of the literature including searches on PubMed Central and Medline and in seminal dermatology texts. Results: There are several disconnections between the evidence-based guidelines in the management of AD, what the individual dermatologist recommends, and what the patient does. Conclusion: Applying the concept of the care triangle requires a balance of evidence-based medicine, the physician's experiences and the patient's needs and expectations in the decisions surrounding appropriate management of the disease.

scholarly journals Identifying and Classifying Quality of Life Tools for Assessing Neurogenic Bowel Dysfunction After Spinal Cord Injury

2019 ◽  
Vol 25 (1) ◽  
pp. 1-22 ◽  
Author(s):  
Mohamed-Amine Choukou ◽  
Krista L. Best ◽  
B. Catharine Craven ◽  
Sander L. Hitzig
Keyword(s):  
Quality Of Life ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Bowel Dysfunction ◽  
Cord Injury ◽  
Neurogenic Bowel
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