RESUMO
PURPOSE: Neurogenic bowel dysfunction (NBD) is a common comorbidity of myelomeningocele (MMC), the most common and severe form of spina bifida. The National Spina Bifida Patient Registry (NSBPR) is a research collaboration between the CDC and Spina Bifida Clinics. Fecal continence (continence) outcomes for common treatment modalities for NBD have not been described in a large sample of individuals with MMC. NSBPR patients with MMC and NBD were studied to determine variation in continence status and their ability to perform their treatment independently according to treatment modality and individual characteristics. METHODS: Continence was defined as < 1 episode of incontinence per month. Eleven common treatments were evaluated. Inclusion criteria were established diagnoses of both MMC and NBD, as well as age ⩾ 5 years (n= 3670). Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate the odds of continence outcomes by age, sex, race/ethnicity, level of motor function, and insurance status. RESULTS: At total of 3670 members of the NSBPR met inclusion criteria between November 2013 and December 2017. Overall prevalence of continence was 45%. Prevalence ranged from 40-69% across different treatments. Among continent individuals, 60% achieved continence without surgery. Antegrade enemas were the most commonly used treatment and had the highest associated continence rate. Ability to carry out a treatment independently increased with age. Multivariable logistic regression showed significantly higher odds of continence among individuals aged ⩾ 12 years, female, non-Hispanic white, and with private insurance.
Assuntos
Incontinência Fecal/etiologia , Incontinência Fecal/terapia , Meningomielocele/complicações , Intestino Neurogênico/complicações , Intestino Neurogênico/terapia , Adolescente , Adulto , Criança , Pré-Escolar , Enema , Feminino , Humanos , Masculino , Estimulação Física/métodos , Supositórios , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: Urban families face many challenges that affect life satisfaction, including low income, limited access to resources, and unstable neighborhoods. PURPOSE: To investigate life satisfaction and identify potential mediators: neighborhood stability, emotional coping strategies, religion, and spirituality. METHODS: A convenience sample of families presenting to an urban primary care clinic for routine care filled out an anonymous, voluntary survey that included demographic data, the Satisfaction with Life Scale (SWLS), the Spiritual Inventory and Beliefs Scale, and an emotional coping inventory. RESULTS: 127 individuals filled out the survey. Life satisfaction was high (21.3 ± 9). Families in the lowest quartile of the SWLS were 4.5 times as likely to have a child with a chronic medical illness. SWLS correlated with strategy planning (r = 0.24, P < .01), external practices of religion (r = 0.23, P < .01), and humility (r = 0.18, P < .05). CONCLUSIONS: Encouraging patients' involvement in religion and certain coping strategies, especially among those families coping with children with special health care needs, may improve life satisfaction.