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1.
Med J Malaysia ; 74(4): 281-287, 2019 08.
Article in English | MEDLINE | ID: mdl-31424034

ABSTRACT

INTRODUCTION: The average incidence of spina bifida (SB) in Malaysia is 0.43 among 1,000 live births. The burden of the disease and its impact on the overall development and health though tremendously improved, remains significant. Therefore, current patient management strategies must include quality of life (QOL) measures. METHODS: This was a prospective, cross-sectional study on spina bifida children aged 5-20 years, attending the paediatric spina bifida clinics of Universiti Kebangsaan Malaysia Medical Centre Kuala Lumpur and Hospital Tuanku Jaanku Seremban. Scores were obtained using the validated disease specific Parkin QOL questionnaire. Univariate and multivariate analysis were used to investigate factors that were determinants for these outcomes. Results were expressed as beta coefficient and 95% confidence intervals (95%CI). RESULTS: A total of 54 children and adolescents aged between 5-20 years completed the questionnaires. Presence of neurogenic bowel (p=0.003), neurogenic bladder (p=0.041), shunt (p=0.044), non-ambulators (p=0.007) and being the only child in the family (p=0.037) were associated with lower QOL scores. Multivariate analysis showed presence of neurogenic bowel (ß=0.375, 95%CI: 0.00, 0.15) and being the only child in the family (ß=0.250, 95%CI: 0.04, 0.17) explained 22.1% of the variance in the QOL mean percentage scores. CONCLUSION: Being a single child in the family was the only socio-demographic variable associated with lower QOL scores. Although several clinical factors appeared to contribute significantly to QOL in spina bifida children, the presence of neurogenic bowel had the greatest impact.


Subject(s)
Quality of Life/psychology , Spinal Dysraphism/psychology , Adolescent , Child , Child, Preschool , Cross-Sectional Studies , Female , Health Status Indicators , Humans , Linear Models , Malaysia , Male , Neurogenic Bowel/etiology , Neurogenic Bowel/psychology , Only Child/psychology , Prospective Studies , Spinal Dysraphism/complications , Spinal Dysraphism/physiopathology , Spinal Dysraphism/therapy , Young Adult
2.
Top Spinal Cord Inj Rehabil ; 25(1): 1-22, 2019.
Article in English | MEDLINE | ID: mdl-30774286

ABSTRACT

Objectives: To identify and classify tools for assessing the influence of neurogenic bowel dysfunction (NBD) on quality of life (QoL) after spinal cord injury (SCI). Methods: In this systematic review, MEDLINE/PubMed, CINAHL, and PsycInfo were searched to identify studies assessing the influence of NBD on QoL (or related construct) after SCI. Two independent reviewers screened titles and abstracts, and both reviewers classified tools as subjective or objective according to Dijkers' theoretical QoL framework. Results: Seventy-two studies were identified, and 35 studies met the inclusion criteria. Five objective measures assessed the influence of NBD on QoL, which were validated for use in SCI, but no measure was condition-specific to NBD. Eight measures were classified as subjective tools; two had an established reliability and validity for SCI while six had some psychometric evidence for use in the SCI population. Five subjective measures (NBD score, Burwood QoL Questionnaire, Impediments to Community Integration [ICI] Scale, SCI-QoL Bowel Management Difficulties, and Survey of Neurogenic Bowel Characteristics) were developed specifically for SCI. The NBD score showed sensitivity to the influence of NBD on QoL in experimental trials. Conclusion: Thirteen tools assessed the influence of NBD on QoL in SCI. Although not developed specifically for SCI, the Health Utility Index (HUI-III) was the only tool identified that provided data on "QoL as utility" on the impact of NBD. The validated NBD score was the only condition-specific tool to assess QoL as "subjective well-being." Further validation of existing tools could help to inform practice and policy related to resource allocation for bowel care post SCI.


Subject(s)
Neurogenic Bowel/psychology , Quality of Life/psychology , Spinal Cord Injuries/psychology , Activities of Daily Living , Adolescent , Adult , Aged , Female , Health Status Indicators , Humans , Male , Middle Aged , Patient Satisfaction , Prognosis , Surveys and Questionnaires/classification , Young Adult
3.
Top Spinal Cord Inj Rehabil ; 25(1): 23-30, 2019.
Article in English | MEDLINE | ID: mdl-30774287

ABSTRACT

Background: Colostomy formation can solve complications of bowel management following spinal cord injury (SCI). Newly injured patients at this spinal unit have chosen colostomy as a preferred option for bowel management. Objectives: To discover the reasons patients choose colostomy formation early following SCI and make comparison with those choosing it later, and to establish whether early colostomy is safe and advisable. Methods: Medical and nursing records of patients with SCI who chose to have a colostomy during the period 2005-2016 were examined retrospectively. Data were gathered concerning reasons for choosing a colostomy, early and later complications, the need for further surgery, and independence with bowel care before and after surgery. Patients were divided into two groups: those who chose a colostomy "early" during inpatient rehabilitation and those who chose it "later" as is traditional. Results: Reasons for choosing colostomy differed. Reducing reliance on caregiver and independence were of more importance to the early group; the later group chose colostomy to solve bowel care problems. Early complication rates in both groups were low. Longer term complications were higher in the early group, with the most common complication being rectal discharge. Parastomal hernia rates were low in both groups, as was the need for further surgery. Colostomy formation led to 20.8% of all patients gaining independence with bowel care. Conclusion: This study found colostomy to be a safe and effective option when performed early after SCI and demonstrates colostomy can be a means of gaining independence and making bowel care easier and more acceptable to the newly injured patient.


Subject(s)
Colostomy/psychology , Neurogenic Bowel/surgery , Patient Acceptance of Health Care/psychology , Quality of Life , Spinal Cord Injuries/psychology , Adult , Aged , Choice Behavior , Colostomy/adverse effects , Colostomy/methods , Female , Humans , Male , Middle Aged , Neurogenic Bowel/psychology , Postoperative Complications/etiology , Retrospective Studies , Time Factors
4.
Curr Gastroenterol Rep ; 20(10): 47, 2018 Aug 29.
Article in English | MEDLINE | ID: mdl-30159690

ABSTRACT

PURPOSE OF REVIEW: To evaluate and report current evidence regarding the management of bowel dysfunction in spinal cord injury. There is a paucity of high-quality large studies on which to base management advice. RECENT FINDINGS: Recent research has focused on defining the nature of symptomatology of bowel dysfunction in SCI and describing the effects on quality of life and social interactions. Technical aspects of colonoscopy have received attention, and aspects of understanding the pathophysiology in relation to both neural and non-neural dysfunction have been studied. There has been refinement and expansion of the pharmacological and non-pharmacological treatment options for bowel dysfunction in SCI. Management of bowel dysfunction in SCI requires a comprehensive and individualized approach, encompassing lifestyle, toileting routine, stimulation, diet, medications, and surgery. Further high-quality research is required to inform best practice.


Subject(s)
Gastrointestinal Diseases/physiopathology , Neurogenic Bowel/therapy , Spinal Cord Injuries/epidemiology , Constipation/etiology , Constipation/physiopathology , Constipation/psychology , Constipation/therapy , Fecal Incontinence/etiology , Fecal Incontinence/physiopathology , Fecal Incontinence/psychology , Fecal Incontinence/therapy , Gastrointestinal Diseases/etiology , Humans , Neurogenic Bowel/etiology , Neurogenic Bowel/physiopathology , Neurogenic Bowel/psychology , Quality of Life , Spinal Cord Injuries/complications , Spinal Cord Injuries/psychology
5.
Eur J Phys Rehabil Med ; 54(6): 873-879, 2018 Dec.
Article in English | MEDLINE | ID: mdl-29745625

ABSTRACT

BACKGROUND: Bowel function is frequently compromised after spinal cord injury (SCI). Regardless of this crucial importance in patients' lives, there is still scarce literature on the Neurogenic Bowel Dysfunction (NBD) deleterious impact on SCI patient's lives and only few studies correlating NBD severity with quality of life (QoL). To our knowledge there are no studies assessing the impact of NBD on the context of ICF domains. AIM: To assess NBD after SCI using ICF domains and to assess its impact in QoL. DESIGN: Retrospective data analysis and cross-sectional phone survey. SETTING: Outpatient spinal cord injury setting. POPULATION: Portuguese adult spinal cord injury patients. METHODS: Retrospective analysis of demographic data, lesion characteristics and bowel management methods at last inpatient discharge. Cross-sectional phone survey assessing current bowel management methods, the Neurogenic Bowel Dysfunction Score and a Likert Scale questionnaire about the impact on ICF domains and QoL. RESULTS: Sixty-four patients answered the questionnaire. The majority was male (65.6%), mean age 56.6±15.6 years, AIS A lesion (39.1%), with a traumatic cause (71.9%). The main bowel management methods were contact laxatives, suppositories and osmotic laxatives. 50.1% of patients scored moderate or severe NBD. Considering ICF domains, the greatest impact was in personal and environmental factors, with 39.1% reporting impact in financial costs, 45.3% in need of assistance, 45.3% in emotional health and 46.9% in loss of privacy. There was a significant association between severity of NBD and negative impact on QoL (P<0.05). CONCLUSIONS: The study confirms the major impact of NBD on personal and environmental factors of ICF and on the quality of life of SCI population. CLINICAL REHABILITATION IMPACT: These findings confirm that it is relevant to identify the main ICF domains affected by NBD after SCI in order to address targeted interventions, working toward changes in health policies and psychosocial aspects.


Subject(s)
Neurogenic Bowel/diagnosis , Neurogenic Bowel/etiology , Spinal Cord Injuries/complications , Adult , Aged , Cross-Sectional Studies , Female , Humans , International Classification of Functioning, Disability and Health , Male , Middle Aged , Neurogenic Bowel/psychology , Quality of Life , Retrospective Studies , Spinal Cord Injuries/psychology , Surveys and Questionnaires
6.
J Neurotrauma ; 35(9): 1091-1105, 2018 05 01.
Article in English | MEDLINE | ID: mdl-29239268

ABSTRACT

Autonomic dysfunction is common in individuals with spinal cord injury (SCI) and leads to numerous abnormalities, including profound cardiovascular and bowel dysfunction. In those with high-level lesions, bowel management is a common trigger for autonomic dysreflexia (AD; hypertension provoked by sensory stimuli below the injury level). Improving bowel care is integral for enhancing quality of life (QoL). We aimed to describe the relationships between bowel care, AD, and QoL in individuals with SCI. We performed an online community survey of individuals with SCI. Those with injury at or above T7 were considered at risk for AD. Responses were received from 287 individuals with SCI (injury levels C1-sacral and average duration of injury 17.1 ± 12.9 [standard deviation] years). Survey completion rate was 73% (n = 210). Bowel management was a problem for 78%: it interfered with personal relationships (60%) and prevented staying (62%) and working (41%) away from home. The normal bowel care duration was >60 min in 24% and most used digital rectal stimulation (59%); 33% reported bowel incontinence at least monthly. Of those at risk for AD (n = 163), 74% had AD symptoms during bowel care; 32% described palpitations. AD interfered with activities of daily living in 51%. Longer durations of bowel care (p < 0.001) and more severe AD (p = 0.04) were associated with lower QoL. Bowel management is a key concern for individuals with SCI and is commonly associated with symptoms of AD. Further studies should explore ways to manage bowel dysfunction, increase self-efficacy, and ameliorate the impact of AD to improve QoL.


Subject(s)
Autonomic Dysreflexia/etiology , Autonomic Dysreflexia/psychology , Neurogenic Bowel/etiology , Neurogenic Bowel/psychology , Spinal Cord Injuries/complications , Activities of Daily Living , Adult , Aged , Aged, 80 and over , Disease Management , Female , Humans , Male , Middle Aged , Neurogenic Bowel/therapy , Quality of Life , Surveys and Questionnaires , Young Adult
7.
J Neurol ; 264(7): 1354-1361, 2017 Jul.
Article in English | MEDLINE | ID: mdl-28550483

ABSTRACT

Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand 'what it is like' to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about the management of bowel dysfunction can inform clinical care and referral pathways.


Subject(s)
Caregivers/psychology , Multiple Sclerosis/complications , Multiple Sclerosis/psychology , Neurogenic Bowel/etiology , Neurogenic Bowel/psychology , Adult , Aged , Constipation/etiology , Constipation/physiopathology , Constipation/psychology , Constipation/therapy , Family/psychology , Fecal Incontinence/etiology , Fecal Incontinence/physiopathology , Fecal Incontinence/psychology , Fecal Incontinence/therapy , Female , Health Communication , Humans , Interviews as Topic , Male , Middle Aged , Multiple Sclerosis/physiopathology , Multiple Sclerosis/therapy , Neurogenic Bowel/physiopathology , Neurogenic Bowel/therapy , Professional-Patient Relations , Qualitative Research , Quality of Life , Self-Management , Social Behavior
8.
Arch Phys Med Rehabil ; 98(2): 241-248, 2017 Feb.
Article in English | MEDLINE | ID: mdl-27473299

ABSTRACT

OBJECTIVES: To describe long-term outcomes of neurogenic bowel dysfunction (NBD), determine changes over time in the type of bowel program, and determine changes in psychosocial outcomes associated with NBD-related factors in adults with pediatric-onset spinal cord injury (SCI). DESIGN: Longitudinal cohort survey. Follow-up occurred annually for a total of 466 interviews, with most participants (75%) contributing to at least 3 consecutive interviews. SETTING: Community. PARTICIPANTS: Adults (N=131) who had sustained an SCI before the age of 19 years (men, 64.1%; tetraplegia, 58.8%; mean age ± SD, 33.4±6.1y; mean time since injury ± SD, 19.5±7.0y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Type and evacuation time of bowel management programs; standardized measures assessing life satisfaction, health perception, depressive symptoms, and participation. Generalized estimating equations were formulated to determine odds of change in outcomes over time. RESULTS: At first interview, rectal suppository/enema use was most common (51%). Over time, the likelihood of using manual evacuation (odds ratio [OR]=1.077; 95% confidence interval [CI], 1.023-1.134; P=.005), oral laxatives (OR=1.052; 95% CI, 1.001-1.107; P=.047), and colostomy (OR=1.071; 95% CI, 1.001-1.147; P=.047) increased, whereas the odds of rectal suppository use decreased (OR=.933; 95% CI, .896-.973; P=.001). Bowel evacuation times were likely to decrease over time in participants using manual evacuation (OR=.499; 95% CI, .256-.974; P=.042) and digital rectal stimulation (OR=.490; 95% CI, .274-.881; P=.017), but increase for rectal suppository/enema use (OR=1.871; 95% CI, 1.264-2.771; P=.002). When the level of injury was controlled for, participants using manual evacuation and digital rectal stimulation were more likely to have increases in community participation scores (P<.05). CONCLUSIONS: Changes in type of bowel program over time may be associated with the time required to complete bowel evacuation in this relatively young adult SCI population.


Subject(s)
Cathartics/therapeutic use , Neurogenic Bowel/psychology , Neurogenic Bowel/therapy , Spinal Cord Injuries/complications , Abdominal Pain/therapy , Adult , Depression/psychology , Fecal Incontinence/therapy , Female , Health Status , Humans , Longitudinal Studies , Male , Middle Aged , Neurogenic Bowel/etiology , Personal Satisfaction , Social Participation , Time Factors
9.
Spinal Cord ; 54(12): 1132-1138, 2016 Dec.
Article in English | MEDLINE | ID: mdl-27184916

ABSTRACT

STUDY DESIGN: A case-control study of prospectively collected data was performed. OBJECTIVES: To compare anorectal biofeedback (BF) outcomes in patients with incomplete motor spinal cord injury (SCI) and neurogenic bowel dysfunction (NBD) with a group of functional anorectal disorder-matched control patients. SETTING: Neurogastroenterology Unit affiliated with a Spinal Injury Unit in a tertiary referral centre in Sydney, Australia. METHODS: All consecutive patients with SCI and NBD referred for anorectal manometry and BF were matched in a 1:2 ratio with age, gender, parity and functional anorectal disorder-matched control patients. Instrumented BF was performed in six nurse-guided weekly visits. Outcomes included changes in anorectal physiology measures, symptom scores and quality-of-life measures. RESULTS: Twenty-one patients were included. These were matched with 42 patient controls. Following BF, symptom scores improved significantly in both groups, as did effect of bowel disorder on quality of life. Improvement in these measures did not differ between the groups. Patients with SCI and NBD showed improvement in their sensory and motor anorectal function, including lowering of first sensation threshold and more effective balloon expulsion. CONCLUSIONS: Patients with incomplete motor SCI responded as well to anorectal BF as functional anorectal disorder-matched controls. Spinal cord-injured patients also showed improvement in anorectal sensorimotor dysfunction and balloon expulsion. These novel findings indicate that clinicians should not be dissuaded from considering behaviour-based therapeutic interventions such as anorectal BF in selected spinal cord-injured patients.


Subject(s)
Biofeedback, Psychology/methods , Neurogenic Bowel/etiology , Neurogenic Bowel/therapy , Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation , Anal Canal/physiopathology , Case-Control Studies , Female , Humans , Male , Middle Aged , Neurogenic Bowel/physiopathology , Neurogenic Bowel/psychology , Prospective Studies , Quality of Life , Rectum/physiopathology , Severity of Illness Index , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/psychology , Treatment Outcome
10.
Neurourol Urodyn ; 35(2): 212-7, 2016 Feb.
Article in English | MEDLINE | ID: mdl-25400229

ABSTRACT

OBJECTIVE: To develop a reliable and valid questionnaire to monitor neurogenic bowel symptoms in children. PATIENTS: Thirty-four children aged 6-18 with neurogenic bowel and their caregivers. Eighteen control patients. METHODS: An expert panel generated a domain of observables and formative/reflective content. Response options were scaled following Likert-type items. Key informant interviews revised the measures. A final questionnaire was given to patients twice to calculate intra-rater reliability using Cohen's Kappa Coefficient (k) and paired t-test. Blinded interviews were conducted after physical examination and health assessment and questionnaires completed by a nurse to determine construct validity and inter-rater reliability using k and Spearman's rank-order correlation. Control patients completed the questionnaire once, their results were used to determine discriminate validity and a receiver operating characteristic (ROC) curve. RESULTS: Intra-rater reliability showed 85% of the questionnaires having k >0.6. Paired t-test results of t(33) = 1.997, P = 0.054, d = 0.53, confirmed there was not a significant difference between the scores of the two completed questionnaires. Inter-rater reliability showed 97% of the questionnaires having k >0.6 between the nurse and the patient/caregiver responses. Scores had a strong positive correlation at rs (32) = 0.943, P < 0.0005. Mean score with neurogenic bowel was 15.18(STD ± 5.77) and control group 4.68(STD ± 2.98). ROC analysis showed an area under the curve of 0.9. A score of 8.5 correlated with presence of neurogenic bowel with sensitivity of 94% and specificity of 87%. CONCLUSION: The questionnaire shows positive reliability and validity when used for pediatric neurogenic bowel patients. The questionnaire differentiates between normal and neurogenic patients. Larger studies are necessary to conduct further validation.


Subject(s)
Fecal Incontinence/diagnosis , Neurogenic Bowel/diagnosis , Spinal Dysraphism/complications , Surveys and Questionnaires , Activities of Daily Living , Adolescent , Age Factors , Area Under Curve , Case-Control Studies , Child , Cost of Illness , Defecation , Fecal Incontinence/etiology , Fecal Incontinence/physiopathology , Fecal Incontinence/psychology , Female , Humans , Male , Neurogenic Bowel/etiology , Neurogenic Bowel/physiopathology , Neurogenic Bowel/psychology , Observer Variation , Predictive Value of Tests , Quality of Life , ROC Curve , Reproducibility of Results , Spinal Dysraphism/diagnosis
11.
Mult Scler Relat Disord ; 4(6): 614-8, 2015 Nov.
Article in English | MEDLINE | ID: mdl-26590671

ABSTRACT

BACKGROUND: Transverse myelitis (TM) associated with Neuromyelitis Optica (NMO) can be severe and is well known to reduce mobility early in the disease. However the burden of bladder and bowel dysfunction is unknown and overlooked. We studied the frequency of bladder and bowel dysfunction and their impact on quality of life. METHODS: A cross-sectional study of 60 patients who had AQP4-IgG positive NMO associated TM was performed using the Bladder Control Scale, Lower Urinary Tract Quality of Life, Bowel Control Scale and Neurogenic Bowel Score, Short-Form-36 Health Survey and EDSS. The relationships between the variables were analysed with multiple linear regression. RESULTS: Fifty women and 10 men participated. 78% (47/60) patients reported bladder symptoms and a similar number reported bowel problems. 87% (52/60) patients reported either bladder or bowel dysfunction. 65% (39/60) developed residual symptoms after the first episode of myelitis and the remaining by the second episode. Both bladder and bowel dysfunction reduced quality of life and required modification of lifestyle in 83% (39/47) and 70% (33/47) respectively. CONCLUSION: Bladder and bowel dysfunction is very common in NMO associated myelitis developing early in the disease and significantly affects quality of life.


Subject(s)
Neurogenic Bowel/psychology , Neuromyelitis Optica/physiopathology , Neuromyelitis Optica/psychology , Quality of Life , Urinary Bladder Diseases/epidemiology , Urination Disorders/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Aquaporin 4/immunology , Autoantibodies/blood , Cross-Sectional Studies , Disability Evaluation , Female , Humans , Immunoglobulin G/blood , Linear Models , Male , Middle Aged , Neurogenic Bowel/epidemiology , Neurogenic Bowel/physiopathology , Neuromyelitis Optica/epidemiology , Severity of Illness Index , United Kingdom/epidemiology , Urinary Bladder Diseases/physiopathology , Urinary Bladder Diseases/psychology , Urination Disorders/epidemiology , Urination Disorders/physiopathology , Young Adult
12.
J Vasc Interv Radiol ; 26(10): 1526-1532.e1, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26208742

ABSTRACT

PURPOSE: To assess the safety and quality of life in adult patients undergoing cecostomy tube placement. MATERIALS AND METHODS: Percutaneous cecostomy was performed in 23 adults (10 men and 13 women) with neurogenic bowel for whom noninvasive therapeutic approaches for chronic refractory constipation or fecal incontinence had failed. Mean patient age was 41 years (range, 19-74 y). A retrospective, standardized questionnaire evaluated satisfaction and quality of life before and after cecostomy. RESULTS: All 23 cecostomy procedures were technically successful with no intraprocedural complications. At a mean follow-up of 42 months (range, 1-160 mo), there was one (5%) major complication, a pericecal abscess. One or more minor complications in 11 of 23 (48%) patients included leaking around the tube (5 of 23; 22%) and partial or complete dislodgment of the tube (3 of 23; 13%). In all cases, the cecostomy tube was exchanged successfully. Satisfaction scores improved from a mean of 2.2 points (range, 0-6 points; median, 1.5) to 7.6 points (range, 4-10 points; median, 8). The percentage of patients using laxative softeners decreased from 74% to 40%, and patients requiring assistance decreased from 52% to 35% after cecostomy placement. CONCLUSIONS: Percutaneous cecostomy is a safe procedure for the management of adult patients. Patients are able to achieve greater independence in their activities of daily living and are highly satisfied with the outcomes.


Subject(s)
Cecostomy/psychology , Neurogenic Bowel/psychology , Neurogenic Bowel/surgery , Patient Satisfaction , Postoperative Complications/psychology , Quality of Life/psychology , Adult , Aged , Aged, 80 and over , Cecostomy/adverse effects , Female , Humans , Male , Middle Aged , Patient Safety , Postoperative Complications/etiology , Treatment Outcome , Young Adult
13.
Arch Phys Med Rehabil ; 96(1): 49-55, 2015 Jan.
Article in English | MEDLINE | ID: mdl-25172370

ABSTRACT

OBJECTIVE: To gain greater insight into the lived experience of individuals with spinal cord injury (SCI) and neurogenic bowel dysfunction (NBD). DESIGN: Qualitative (phenomenologic) interviews and analysis. SETTING: Community. PARTICIPANTS: Individuals with SCI and NBD (N=19) residing in the community. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Concerns related to living with NBD after SCI. RESULTS: Challenges related to living with SCI and NBD included costs and requirements, emotional impact, diet, education and employment, intimacy and interpersonal relations, social participation, spontaneity and daily schedule, travel, lack of appropriate and consistent assistance, loss of autonomy (independence, privacy), lack of predictability and fear of incontinence, medical complications, pain or discomfort, physical effort of the bowel routine, physical experience, and time requirements. CONCLUSIONS: Living with NBD presents many challenges. When categorized according to the International Classification of Functioning, Disability and Health, identified domains include body functions and structures, activity, participation, environmental factors, and personal factors. Identified issues have implications for improving clinical management and should be assessed when determining the impact and efficacy of interventions.


Subject(s)
Neurogenic Bowel/etiology , Neurogenic Bowel/psychology , Quality of Life , Spinal Cord Injuries/complications , Adult , Diet , Employment/psychology , Humans , Interpersonal Relations , Middle Aged , Pain/etiology , Social Participation
14.
Child Care Health Dev ; 40(6): 863-9, 2014 Nov.
Article in English | MEDLINE | ID: mdl-24261461

ABSTRACT

BACKGROUND: Neurogenic bowel dysfunction in children is a lifelong condition often resulting in the need for active bowel management programmes, such as transanal irrigation. Parents are central in the decision-making process to initiate and carry out treatments until such a time their child becomes independent. Minimal research has focussed on examining parents' experiences of undertaking transanal irrigation with their child. This study aimed to explore parents' experiences of learning about and using irrigation with their child and how parents motivated their children to become independent. METHODS: Semi-structured telephone interviews were conducted with parents with experience of using transanal irrigation with their child. Interviews were undertaken by a parent researcher. Data were analysed using qualitative content analysis. RESULTS: Eighteen telephone interviews (16 mothers, 1 father and 1 carer) were conducted. Parents shared how they had negotiated getting started and using transanal irrigation with their child. They discussed a sense of success derived from their confidence in using and mastering irrigation, the process of making decisions to continue or stop using irrigation and how they motivated themselves and their child to continue with the irrigation regime. Challenges included minimizing their child's distress during the irrigation procedure and how they negotiated and moved towards their child becoming independent. CONCLUSION: Despite the emotional difficulty parents experienced as a result of the invasive nature of transanal irrigation most parents reported an improvement in their child's faecal continence which positively impacted on the child and family's lives. The child's physical ability and emotional readiness to develop independent irrigation skills in the future concerned some parents. The experiences shared by parents in this study has the capacity to inform transanal irrigation nursing and medical care.


Subject(s)
Activities of Daily Living/psychology , Child Rearing/psychology , Fecal Incontinence/psychology , Neurogenic Bowel/psychology , Parents/psychology , Self Care/psychology , Therapeutic Irrigation , Adolescent , Adult , Age Factors , Child , Child, Preschool , Decision Making , Evidence-Based Medicine , Fecal Incontinence/prevention & control , Female , Humans , Male , Middle Aged , Motivation , Neurogenic Bowel/therapy , Qualitative Research , Surveys and Questionnaires , Therapeutic Irrigation/methods , Therapeutic Irrigation/psychology
16.
Rehabil Nurs ; 37(3): 128-35, 2012.
Article in English | MEDLINE | ID: mdl-22549630

ABSTRACT

PURPOSE: To investigate the association between characteristics of individuals with spinal cord injury and neurogenic bowel and their perceived quality of life. DESIGN/METHODS: The study design is an exploratory, descriptive correlational design. To measure the variables of the study the Quality of Life Survey developed by Randell et al. (2001) was used to measure perceived quality of life related to bowel management. Individual bowel management preferences and subjective costs and benefits of the preferences were gathered through the Neurogenic Bowel Characteristics Survey. PARTICIPANTS/METHOD: Data were collected from a random half of the individuals who met the inclusion criteria from the patient database (n=1193). Two hundred and forty one surveys were analyzed for this study. DISCUSSION: More than half of the sample (n=134) provided their own bowel management consisting of digital stimulation, suppositories, and other aids; 8% (n=19) had a colostomy. Regardless of the bowel management program 54% (n=127) were satisfied with current methods. Although time reported to complete bowel programs ranged from 1 to 120 minutes, there was no difference in rating of satisfaction with time. There was a statistically significant difference between those satisfied and dissatisfied with current bowel management and quality of life; those satisfied demonstrated a higher quality of life on three subscales, work function (p= .021), bowel problems (p< .001), and social function (p< .001). Those dissatisfied with their bowel program perceived a lower quality of life and indicated problems of time (p= .001), pain or discomfort (p= .033), and poor results (p< .001). CLINICAL RELEVANCE: Research data provide the patient's perspective on bowel management characteristics, complications, satisfaction, and their perceived quality of life. Results of this research will be incorporated into bowel management education and possible modification of the current inpatient bowel management program.


Subject(s)
Neurogenic Bowel/nursing , Neurogenic Bowel/rehabilitation , Quality of Life , Spinal Cord Injuries/nursing , Spinal Cord Injuries/rehabilitation , Health Surveys , Humans , Neurogenic Bowel/psychology , Qualitative Research , Random Allocation , Rehabilitation Nursing/methods , Spinal Cord Injuries/psychology , Surveys and Questionnaires
17.
Neurourol Urodyn ; 31(7): 1170-4, 2012 Sep.
Article in English | MEDLINE | ID: mdl-22460386

ABSTRACT

Most children with neurogenic bladder dysfunction arrive into adolescence with reasonably managed lower urinary tract function only to experience bladder and kidney function deterioration after puberty. The aim of this article is to identify issues that contribute to adverse changes in bladder and renal function during adolescence and to highlight strategies to preserve urinary tract integrity, social continence, patient autonomy, and independence. Surveillance of bladder function requires patient attendance at review appointments and compliance with treatment plans. While encouraging independence and treatment compliance the clinician also needs to consider altered mental concentrating ability and fine motor skills of these patients. A keen eye for imminent loss of patient compliance to treatment protocol should be the mainstay of each encounter during puberty and adolescence. Annual surveillance of adolescent neurogenic bladder patients facilitates early identification of risk factors for urinary tract deterioration. Investigations include renal and bladder ultrasonography, urodynamic study when indicated, substantiated by videocystometry when anatomical status dictates. Serum creatinine should be measured and renal scintigraphy performed when upper urinary tract dilation, renal scarring, or atrophy are suspected. Optimal management of adolescents with neurologic disease of the urinary tract included strategies to reduce elevated detrusor pressure, maintain bladder compliance, and maximize dryness. Antimuscarinic medications, botulinum toxin A, and surgical procedures are enhanced by bowel management regimens and regular nurse or urotherapist patient contact. Caring for the patient as a whole requires discussion of sexuality, fertility status, and behaviors that increase the risk of progressive urinary tract damage.


Subject(s)
Adolescent Behavior , Neurogenic Bowel/therapy , Patient Compliance , Urinary Bladder, Neurogenic/therapy , Urinary Bladder/physiopathology , Adolescent , Age Factors , Biomarkers/blood , Combined Modality Therapy , Creatinine/blood , Disease Progression , Humans , Kidney/pathology , Kidney/physiopathology , Meningomyelocele/complications , Neurogenic Bowel/diagnosis , Neurogenic Bowel/etiology , Neurogenic Bowel/physiopathology , Neurogenic Bowel/psychology , Predictive Value of Tests , Risk Factors , Self Care , Treatment Outcome , Urinary Bladder, Neurogenic/diagnosis , Urinary Bladder, Neurogenic/etiology , Urinary Bladder, Neurogenic/physiopathology , Urinary Bladder, Neurogenic/psychology , Urodynamics , Video Recording
18.
Spinal Cord ; 48(7): 554-9, 2010 Jul.
Article in English | MEDLINE | ID: mdl-20065986

ABSTRACT

STUDY DESIGN: Cross-sectional study. OBJECTIVE: To analyze the predictors of severe neurogenic bowel dysfunction (NBD) in persons with spinal cord injury (SCI). SETTING: The Kaohsiung Medical University Hospital, Taiwan. METHODS: Two questionnaires-the NBD score and the Beck Depression Inventory second edition-were sent to 232 persons with SCI by mail. The demographic factors and injury-related factors were recorded to evaluate any relationships with severe NBD. The associations between the severity of NBD and psychological condition were also measured. RESULTS: In all, 39.4% of the respondents suffered from severe NBD. Multiple logistic regression analysis showed that those with a cervical injury (odds ratios (OR)=10.5, 95% confidence interval (CI) 1.6-67.7) or a thoracic injury (OR=7.1, 95% CI 1.2-40.3) had a higher risk of severe NBD than those with a lumbar injury. Persons with American Spinal Injury Association (ASIA) A had a 12.8-fold higher risk of severe NBD than persons with ASIA D (OR=12.8, 95% CI 3.3-50.1). Longer duration of injury (> or =10 years) was another risk factor of severe NBD. Moderate-to-severe depression was associated with reduced bowel function. CONCLUSIONS: This study showed that high level of cord lesion, completeness of cord injury and longer duration of injury (> or =10 years) could predict the severity of NBD in patients with SCI.


Subject(s)
Neurogenic Bowel/diagnosis , Neurogenic Bowel/etiology , Spinal Cord Injuries/complications , Adolescent , Adult , Age Factors , Aged , Aged, 80 and over , Female , Humans , Logistic Models , Male , Middle Aged , Neurogenic Bowel/psychology , Predictive Value of Tests , Retrospective Studies , Risk Factors , Severity of Illness Index , Spinal Cord Injuries/psychology , Surveys and Questionnaires , Young Adult
19.
Br J Nurs ; 17(13): 836-41, 2008.
Article in English | MEDLINE | ID: mdl-18856146

ABSTRACT

There are a number of neurological conditions that cause bladder and bowel problems in the form of neurogenic bladder and bowel dysfunction. Both have a considerable impact on a person's quality of life. Nurses have an important role to play in supporting patients when considering the options available to manage their neurogenic bladder and bowel problems. This article is the first of a series of three. Part 1 outlines the physiology of micturition and defecation. It discusses the pathophysiological changes in neurogenic bladder and bowel in spinal cord injury, spina bifida, multiple sclerosis, stroke and acquired brain injury, cerebral palsy, Parkinson's disease and diabetes mellitus. The psychosocial impact of this neurogenic dysfunction is addressed. Part 2 discusses the physical and psychosocial issues related to the management of neurogenic bowel dysfunction, and part 3 goes on to discuss the physical and psychosocial management of neurogenic bladder dysfunction.


Subject(s)
Neurogenic Bowel/physiopathology , Quality of Life , Urinary Bladder, Neurogenic/physiopathology , Humans , Neurogenic Bowel/etiology , Neurogenic Bowel/psychology , Urinary Bladder, Neurogenic/etiology , Urinary Bladder, Neurogenic/psychology
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