Survey of U.S. adults with spina bifida

Morley, Christopher P.; Struwe, Sara; Pratte, Morgan A.; Clayton, Gerald H.; Wilson, Pamela E.; Dicianno, Brad E.; Formica, Margaret K.; Schad, Laura A; Thibadeau, Judy; Turk, Margaret A.

doi:10.1016/j.dhjo.2019.100833

Cited by 21 publications

(16 citation statements)

References 19 publications

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“…including nociceptive, nociplastic, neuropathic) in CP or SB and how they contribute to psychological morbidity onset/progression. Pain is experienced by adults with CP and SB when completing normal tasks, such as dressing and transferring, or other activities that require medical interventions (Fox et al, 2019; Morley et al, 2020). Prior research has found that nearly 40% of adults with CP and 45% of those diagnosed with SB commonly experienced pain and severe fatigue (Benner et al, 2017; van Gorp et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

“…When compared to individuals without CP, about 70–75% of adults with CP report chronic pain (Fox et al, 2019; van der Slot et al, 2020). Individuals with SB are likely to have pain in all regions of their bodies, with pain in legs (thigh, hip, knee, shin, and ankle) reported most often (Morley et al, 2020). Assessment of putative pain mechanisms could provide new insight into the pain experience in adults with CP and SB and inform interventions to address pain and psychological morbidity.…”

Section: Discussionmentioning

confidence: 99%

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Psychological morbidity among adults with cerebral palsy and spina bifida

et al. 2020

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Background Very little is known about the risk of developing psychological morbidities among adults living with cerebral palsy (CP) or spina bifida (SB). The objective of this study was to compare the incidence of and adjusted hazards for psychological morbidities among adults with and without CP or SB. Methods Privately insured beneficiaries were included if they had an International Classification of Diseases, Ninth revision, Clinical Modification diagnostic code for CP or SB (n = 15 302). Adults without CP or SB were also included (n = 1 935 480). Incidence estimates of common psychological morbidities were compared at 4-years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident psychological morbidities. Results Adults living with CP or SB had a higher 4-year incidence of any psychological morbidity (38.8% v. 24.2%) as compared to adults without CP or SB, and differences were to a clinically meaningful extent. Fully adjusted survival models demonstrated that adults with CP or SB had a greater hazard for any psychological morbidity [hazard ratio (HR): 1.60; 95% CI 1.55–1.65], and all but one psychological disorder (alcohol-related disorders), and ranged from HR: 1.32 (1.23, 1.42) for substance disorders, to HR: 4.12 (3.24, 5.25) for impulse control disorders. Conclusions Adults with CP or SB have a significantly higher incidence of and risk for common psychological morbidities, as compared to adults without CP or SB. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce the risk of disease onset/progression in these higher-risk populations.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Psychological morbidity among adults with cerebral palsy and spina bifida

et al. 2020

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“…For more information on nutrition and obesity as well as anthropomorphic measurements, please see the Nutrition, Metabolic Syndrome and Obesity Guidelines article in this special issue. Other common secondary/chronic conditions of concern for people with SB include pain, bowel/bladder management, pressure ulcers, depression, sleep disturbance, and limited social and community participation [35][36][37]. The most common medical condition reported in a US survey of adults with SB (n = 852) was pain within the past 7 days (46.9% of respondents), involving the low back and lower limbs [37].…”

Section: Discussionmentioning

confidence: 99%

“…Other common secondary/chronic conditions of concern for people with SB include pain, bowel/bladder management, pressure ulcers, depression, sleep disturbance, and limited social and community participation [35][36][37]. The most common medical condition reported in a US survey of adults with SB (n = 852) was pain within the past 7 days (46.9% of respondents), involving the low back and lower limbs [37]. Bowel and bladder concerns should also be addressed since they significantly impact quality of life and function [35,37,38] and are related to increased care utilization in all age groups [24,39,40].…”

Section: Discussionmentioning

confidence: 99%

“…The most common medical condition reported in a US survey of adults with SB (n = 852) was pain within the past 7 days (46.9% of respondents), involving the low back and lower limbs [37]. Bowel and bladder concerns should also be addressed since they significantly impact quality of life and function [35,37,38] and are related to increased care utilization in all age groups [24,39,40]. Recurrent urinary tract infections occur in approximately 30% of individuals with SB and have implications for antibiotic stewardship and long-term renal function [37,41].…”

Section: Discussionmentioning

confidence: 99%

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Health promotion and preventive health care service guidelines for the care of people with spina bifida

Fremion

Kanter

Turk

2020

PRM

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Individuals with Spina Bifida (SB) have unique lifelong medical and social needs. Thus, when considering how to promote health and offer preventive care, providers must consider how to adapt general healthcare screening and counseling recommendations to their patients’ physical and cognitive impairments along with discerning how to monitor secondary or chronic conditions common to the population. This article provides an update on the health promotion and preventive health care guidelines developed as part of the Spina Bifida Association’s fourth edition of the Guidelines for the Care of People with Spina Bifida. The guidelines highlight accommodations needed to promote general preventive health, common secondary/chronic conditions that require monitoring such as obesity, metabolic syndrome, hypertension, musculoskeletal pain, and considerations for preventing acute care utilization for the SB population throughout the lifespan. Further research is needed to understand the effectiveness of preventive care interventions in promoting positive health outcomes and mitigating potentially preventable acute care utilization.

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Pain interference, pain type, and quality of life among adults with spina bifida

Smith,

Richardson,

Cowan

2023

PM&R

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IntroductionIndividuals with spina bifida (SB) experience nociceptive and neuropathic pain, and women with SB report more pain. However, the relationship between pain type and gender on pain interference and QOL among those with SB is less understood.ObjectiveTo assess relationships among pain interference, pain quality, participation quality of life (QOL) and gender among adults with spina bifida (SB).Design51 adults with SB completed a self‐report survey assessing SB characteristics, pain severity, pain type, pain interference and QOL.SettingHospital outpatient adult SB clinic.InterventionsNot applicable. Main Outcome Measures: Measures of nociceptive pain quality, neuropathic pain quality, participation‐related quality of life as well as pain interference with general activities, mood, and sleep were selected a priori as study measures.ResultsFifty‐eight percent (N=30) reported pain and more women than men reported pain (69% vs 38%, p=0.003). Higher general pain interference was associated with lower QOL (r=0.444, p=0.042), but not mood or sleep pain interference (both p≥0.451). There was no significant difference in pain interference between genders (p=0.138). Nociceptive pain was more common. Levels of nociceptive pain were positively associated with general pain interference, sleep pain interference, and mood pain inference. Neither pain type was associated with QOL (both p >0.082).ConclusionsThe results from this study reveal key differences/similarities amongst four interrelated factors: pain, pain interference, QOL, and gender. Pertinent information gathered on pain type and quality of life, like increased prevalence of nociceptive pain, can be utilized to formulate proactive and effective treatment plans for individuals with SB that may benefit their sleep pain interference and mood pain interference .This article is protected by copyright. All rights reserved.

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Survey of U.S. adults with spina bifida

Cited by 21 publications

References 19 publications

Psychological morbidity among adults with cerebral palsy and spina bifida

Psychological morbidity among adults with cerebral palsy and spina bifida

Health promotion and preventive health care service guidelines for the care of people with spina bifida

Pain interference, pain type, and quality of life among adults with spina bifida

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