Correlates of care for young men with Duchenne and Becker muscular dystrophy.

INTRODUCTION: In progressive conditions, such as Duchenne and Becker muscular dystrophy (DBMD), the need for care may outpace care use. We examined correlates that contribute to utilization of needed care. METHODS: Structured interviews were conducted on use of care among 34 young men with DBMD who were born before 1982. RESULTS: Disease severity, per capita income, and presence of other relatives with DBMD predicted greater use of services. Race/ethnicity, acculturation, and level of caregiver education did not significantly predict service utilization. CONCLUSIONS: We identified disparities in receipt of healthcare and related services in adult men with DBMD that can affect quality of life. Despite the high disease severity identified in this population, these men utilized only half of the services available to individuals with significant progressive conditions. Providers should be aware of low service utilization and focus on awareness and assistance to ensure access to available care.

Palliative care services in families of males with Duchenne muscular dystrophy.

INTRODUCTION: Palliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD). METHODS: The objective of this study was to describe the palliative care services that families of males with DMD report they receive. A questionnaire was administered to families of males with DMD born prior to January 1, 1982. Thirty-four families responded. RESULTS: Most families (85%) had never heard the term palliative care. Only attendant care and skilled nursing services showed much usage, with 44% and 50% indicating receipt of these services, respectively. Receipt of other services was reported less frequently: pastoral care (27%); respite care (18%); pain management (12%); and hospice care (6%). Only 8 respondents (25%) reported having any type of directive document in place. CONCLUSION: The data suggest a need for improved awareness of palliative care and related services among families of young men with DMD.

Measuring impairment and functional limitations in children with cerebral palsy.

OBJECTIVE: The disablement model provides a theoretical framework for the assessments of individuals with cerebral palsy (CP). The purpose of this study was to evaluate the relative validity of multiple measures for impairment and functional limitations and to estimate the relationship between the two global factors using confirmatory factor analysis. METHODS: Over 50 measures of impairment and functional limitations were collected for 57 children with spastic CP. There were 12, 10, 5, 7 and 23 children who were classified in Gross Motor Function Classification System (GMFCS) Levels I to V, respectively. RESULTS: The measures of impairment with the highest factor loadings were several single-item ratings of spasticity; the Modified Ashworth hamstring and biceps ratings, and goniometric measures. All of the functional limitation measures had high factor loadings, including the gross motor function measure, GMFCS, the Paediatric Evaluation of Disability Inventory and WeeFIM self care and mobility scales. The correlation between the global factors of impairment and functional limitations was 0.96, indicating that the two factors are highly correlated in spastic CP. CONCLUSION: The disablement model is a valuable theoretical tool that can be used to organise assessments in CP and to explain how they are related.

Motivational interviewing versus prescriptive advice for smokers who are not ready to quit.

OBJECTIVE: Smokers who are not ready to quit are a very difficult group to treat. Physicians, nurses, and nurse practitioners are in a unique position to encourage patients to quit smoking. However, the best approach to do so is not clear. METHODS: A two-group randomized controlled trial with 218 pack-a-day precontemplative and contemplative smokers recruited from the community. The laboratory-based study was designed to simulate outpatient visits to general practitioners. Participants were randomized to a 15-min intervention to compare the effectiveness of brief motivational or prescriptive counseling by a health professional. Thirteen outcome variables included intentions to quit and verbal reports at 1 and 6 months with biological verification. A composite outcome measure was constructed to provide greater power to detect study differences. RESULTS: Approximately 33% of the sample reported at least one 24-h quit period during the 6 months they were followed after the trial. Results suggest that while neither treatment was superior, there were subgroup differences. Participants in the motivational condition were also more likely to respond to follow-up calls. CONCLUSIONS AND PRACTICE IMPLICATIONS: Motivational interviewing and prescriptive advice were equally effective for precontemplative and contemplative smokers. Practitioners should use the method that appeals to them.

Using Rasch modeling to measure acculturation in youth.

Ethnic differences in health outcomes are assumed to reflect levels of acculturation, among other factors. Health surveys frequently include language and social interaction items taken from existing acculturation instruments. This study evaluated the dimensionality of responses to typical bilinear items in Latino youth using Rasch modeling. Two seven-item scales measuring Anglo-Hispanic orientation were adapted from Marin and Gamba (1996) and Cuellar, Arnold, and Maldonado (1995). Most of the items fit the Rasch model. However, there were gaps in both the Hispanic and Anglo scales. The Anglo items were not well targeted for the sample because most students reported they always spoke English. The lack of variability found in a heterogeneous sample of Latino youth has negative implications for the common practice of relying on language as a measure of acculturation. Acculturation instruments for youth probably need more sensitive items to discriminate linguistic differences, or to measure other factors.

Supportive psychotherapy for perinatal depression: preliminary data for adherence and response.

BACKGROUND: We sought to determine patient factors associated with adherence and response to a manualized supportive psychotherapy designed for pregnant and postpartum women with major depressive disorder (MDD). METHODS: Supportive psychotherapy was provided to all participants in parallel to a placebo-controlled trial of omega-3 fatty acids. The supportive psychotherapy was a six-session, manualized intervention. Clinicians recorded participation and adherence. Symptom rating scales were completed at baseline and every 2 weeks and included the Hamilton Depression Rating Scale (HAM-D) as the primary outcome. N=59 participants were enrolled. Subjects were referred by obstetrical and pediatric health-care providers. Descriptive statistics and general linear models were used to assess the study outcomes. RESULTS: The mean number of completed sessions was 4.4 out of a full course of 6. There were no significant differences found between omega-3 fatty acid and placebo groups in the parallel assessments. We found significantly lower adherence to the psychotherapy sessions for women who were not married, were unemployed, and those with higher scores on the HAM-D at baseline. Completion of a greater number of psychotherapy sessions, lower baseline depression scores, and postpartum status (compared with pregnant status) were associated with lower final HAM-D scores. Overall, the response rate was 52.9% (> or =50% decrease on HAM-D scores), and the remission rate (final score<8) was 31.4%. CONCLUSIONS: Study limitations included small sample size, and possible nonspecific and placebo effects. Adherence appears important in response to supportive psychotherapy in women with perinatal MDD, and future efforts to improve adherence in perinatal women with MDD are warranted.

Pharmacokinetics of sertraline across pregnancy and postpartum.

Insufficient data inform dosing of antidepressants and clinical monitoring for major depressive disorder (MDD) during the perinatal period. The objectives were to assess the pharmacokinetics of sertraline (SER) across pregnancy and postpartum. Participants treated with SER for MDD underwent serial sampling to measure steady-state concentrations of SER and norsertraline during the second and third trimesters and postpartum (total of 3 assessments). Blood was drawn before observed SER administration and 0.5, 1, 2, 4, 6, 8, 10, 12, and 24 hours after administration. A sensitive high-performance liquid chromatography/mass spectrometric method for simultaneous determination of serum concentrations of SER and norsertraline was developed and validated. For each sampling period for SER, area under the serum concentration versus time curve, maximal serum concentration (Cmax), and the time at which Cmax occurred (Tmax) were determined. Of 11 women initially enrolled, 6 completed second- and third-trimester assessments, and 3 completed all 3 assessments (including the postpartum assessment). Mean changes on all pharmacokinetic parameters were nonsignificant between assessments, although there was a marked heterogeneity among individuals. Results were not significantly altered by incorporation of body weights into the analyses. The range of pharmacokinetic changes between individuals was broad, indicating heterogeneity regarding the impact of pregnancy on SER metabolism. Overall, lowest observed SER area under the curve and Cmax occurred in the third trimester (observed in 5 of 6 participants). Despite nonsignificant mean pharmacokinetic changes, the range of pharmacokinetic changes across pregnancy warrants careful monitoring of depressive symptoms in women with MDD in late pregnancy and further study.

Confirmatory factor analysis in osteopathic medicine: fascial and spinal motion restrictions as correlates of muscle spasticity in children with cerebral palsy.

CONTEXT: While numerous measures are available to assist physicians in assessing patients with cerebral palsy, there is a paucity of instruments that capture data relevant to osteopathic assessment. The lack of such tools limits the reach of research in key osteopathic indicators. METHODS: A structured objective form designed to assist osteopathic physicians in the evaluation of fascial restriction, restriction of spinal motion, and muscle spasticity was developed for use during osteopathic musculoskeletal structural examinations. Data were collected as part of a larger study investigating the effects of osteopathic manipulative treatment versus acupuncture in children with cerebral palsy. In the present study, confirmatory factor analysis was used to examine the relationships between fascial and spinal motion restrictions in addition to spasticity. RESULTS: In 57 children with spastic cerebral palsy, latent factors for fascial restrictions and spinal motion restriction fit the data well and both factors were correlated with a visual analog scale rating of the child's muscle spasticity. CONCLUSIONS: These findings provide preliminary evidence for the factorial and concurrent validity of fascial and spinal motion restrictions, demonstrating the benefits of an instrument for assessing the results of osteopathic musculoskeletal structural examinations.

Measuring progress toward smoking cessation.

Measuring the effect of behavioral interventions is often limited to a single outcome variable for ease of analysis. In the case of low probability outcomes, this narrow focus may often result in Type II errors, reducing the likelihood of detecting an effect of an intervention. The development and use of a scale to measure progress toward the ultimate desired change in behavior might result in greater sensitivity to subtle, but important, effects of interventions. That possibility is illustrated by the development and exploratory testing of a scale meant to measure penetration into the process of change with respect to smoking cessation. The scale consists of a set of outcome indicators that are intended to represent the sequential steps that smokers go through in moving toward and ultimately giving up smoking. Rasch analyses indicate that the scale is coherent and merits further development. It seems likely that similar scales might be developed to assess progress toward change for many other behaviors that seem to require a gradual process of change that can be indexed by items representing discrete steps along the way.

Use of complementary and alternative medical therapies among children with special health care needs in southern Arizona.

OBJECTIVE: The objective of this study was to assess the frequency and type of complementary and alternative medicine (CAM) therapies used by families of children with special health care needs in southern Arizona, as well as the correlates of their use. METHODS: Families of 376 children who were receiving services in a regional facility that serves children with special health care needs and were residing in southern Arizona were surveyed regarding CAM use. RESULTS: Sixty-four percent of these families reported using CAM for their child. The most common CAM therapies were spiritual healing/prayer/blessings. Of the conditions that were evaluated as correctable, the use rate was 24% as compared with a 76% use rate for children with a nonrepairable condition. Use of CAM for the child was strongly related to the use of CAM in the past by the family member who responded to the survey. The reasons that parents most frequently chose for using CAM were advice from a medical practitioner and advice from a family member. CONCLUSIONS: Use of CAM for children with special health care needs is common. Its frequency and type are significantly associated with the child's condition and prognosis.

Systematic review of treatments for recurrent abdominal pain.

OBJECTIVE: To conduct a systematic review of evaluated treatments for recurrent abdominal pain (RAP) in children. METHODS: Online bibliographic databases were searched for the terms "recurrent abdominal pain," "functional abdominal pain," "children," or "alternative therapies" in articles classified as randomized controlled trials. The abstracts or full text of 57 relevant articles were examined; 10 of these met inclusion criteria. Inclusion criteria required that the study involve children aged 5 to 18 years, subjects have a diagnosis of RAP, and that subjects were allocated randomly to treatment or control groups. The methodology and findings of these articles were evaluated critically, and data were extracted from each article regarding study methods, specific interventions, outcomes measured, and results. RESULTS: Studies that evaluated famotidine, pizotifen, cognitive-behavioral therapy, biofeedback, and peppermint oil enteric-coated capsules showed a decrease in measured pain outcomes for those who received the interventions when compared with others in control groups. The studies that evaluated dietary interventions had conflicting results, in the case of fiber, or showed no efficacy, in the case of lactose avoidance. CONCLUSIONS: Evidence for efficacy of treatment of RAP in children was found for therapies that used famotidine, pizotifen, cognitive-behavioral therapy, biofeedback, and peppermint oil enteric-coated capsules. The effects of dietary fiber were less conclusive, and the use of a lactose-free diet showed no improvement. There seemed to be greater improvement when therapy (famotidine, pizotifen, peppermint oil) was targeted to the specific functional gastrointestinal disorder (dyspepsia, abdominal migraine, irritable bowel syndrome). The behavioral interventions seemed to have a general positive effect on children with nonspecific RAP. Many of these therapies have not been used widely as standard treatment for children with RAP. Although the mechanism of action for each effective therapy is not fully understood, each is believed to be safe for use in RAP.