A descriptive study of foot problems in children with juvenile rheumatoid arthritis (JRA).

In this study, we evaluated the feet of 144 consecutive children with juvenile rheumatoid arthritis (JRA) during a routine outpatient visit to discover patterns of foot problems. We found that all but nine subjects had at least 1 of 21 foot problems, categorized as inflammation, limitation of motion, and abnormal alignment. Overall, pronated rearfoot and midfoot were observed in 73% and 72% of JRA patients, respectively. Additionally, 36% had splayfoot, whereas 35% of subjects had ankle limitation of motion. Other common foot problems included pronated forefoot, rearfoot and forefoot synovitis, forefoot limitation of motion, and toe valgus. Significant differences in the occurrence of various foot problems were observed among JRA onset/course subgroups and were influenced by both age and disease duration. Specifically, subjects with polyarticular JRA had more forefoot limitation and toe valgus, whereas subjects with pauciarticular JRA had pronated forefoot more often. Ankle limitation of motion, although unrelated to the JRA sub-group, was related to the duration of JRA. Subjects with longer disease histories also had toe valgus more often. Conversely, forefoot limitation of motion seemed to be more a function of age than of disease duration. These results indicate that foot problems are common in the JRA population, and they underscore the need for thorough evaluation and physical therapy management.

An educational needs assessment of children with juvenile rheumatoid arthritis.

OBJECTIVE: Our objective is to describe the use of the PRECEDE model (predisposing, reinforcing, and enabling causes in educational diagnosis and evaluation) to organize needs assessment data in order to define self-management behaviors and plan an educational intervention for children with juvenile rheumatoid arthritis (JRA) and their families. METHODS: Analysis was done of needs assessment data collected from several sources: 1) literature review, 2) survey of parents of 51 children with JRA, 3) group interview of seven parents of children with JRA, 4) results of pilot programs, and 5) clinical experience of an interdisciplinary pediatric rheumatology team. RESULTS: Two sets of interrelated behavioral factors were identified through the needs assessment: 1) those related to managing the school environment to facilitate optimal participation and to minimize school-related disability, and 2) those related to treating pain and stiffness, intervening in the disease process, and preserving joint function. CONCLUSION: Both of these sets of behavioral factors may be related to the optimization of children's mobility, joint function, and autonomy of activities of daily living and should be targets of an educational intervention.

Bridging the "med-ed gap" for students with special health care needs: a model school liaison program.

A successful school experience is critical to the development of all children, particularly in the areas of academic achievement, regular school attendance, and social competency. Vulnerabilities in achieving each of these three goals have been documented among students with special health care needs (SSHCN), and ascribed to the influence of their health-related disabilities. Despite recognition of these vulnerabilities, barriers still exist to successful integration of SSHCN into educational settings. A key barrier to successful integration involves poor linkages between the health and education systems. This article describes a model linkage system--the School Liaison Program at Texas Children's Hospital, developed as a U.S. Dept. of Health and Human Services Maternal and Child Health Bureau Special Project of Regional and National Significance. The program provides educational liaison services between the largest pediatric hospital in the United States and school districts in the fourth largest city. A description of the linkage system emphasizes interdisciplinary staffing by both special educators and health providers. The model for educational liaison service delivery presented includes the elements of eligibility, assessment of the educational implications of illness, plan development and referral, involvement in educational placement, and monitoring. Resources for integrating SSHCN into educational settings are suggested.

Health services delivery to students with special health care needs in Texas public schools.

A statewide survey of 2,875 Texas public school nurses was conducted to determine the characteristics, needs, and involvement of nurses in the health and education management of students with special health care needs (SSHCN). The 1,574 survey respondents (response rate = 55%) were primarily registered nurses (84%) with a mean of 8.6 years (SD = 7.1) of experience in the school setting. Respondents served 1.5 school campuses on average; the mean nurse-to-student ratio per campus was 1:728 (SD = 518). Respondents identified 106,650 SSHCN (6% of total enrollment). Asthma (47%), attention deficit disorder (26%), and seizure disorders (8%) were the most prevalent conditions encountered among SSHCN. Medication administration (54%), diapering (12%), and inhalation respiratory treatments (11%) were the most common of 48,569 health procedures delivered daily to SSHCN by nurses, clerical staff, assistants, and teachers. Parents were identified as the primary source of both child-specific health (70%) and training (68%) information in the school setting. Although nurses, of all school personnel, are likely best able to speak to the impact of a child's health impairment and needed school services, only 32% of respondents reported routine participation in special education eligibility evaluations and only 18% reported routine attendance at special education meetings for SSHCN. Moreover, 84% and 92%, respectively, reported discomfort at participating in special education eligibility evaluations and attending special education meetings.

Brief report: adherence-facilitating behaviors of a multidisciplinary pediatric rheumatology staff.

Investigated the behaviors of pediatric rheumatology health care providers that were expected to be related to patient or parent adherence. Medical charts of 108 patients ages 1 to 20 years diagnosed with Juvenile Rheumatoid Arthritis were examined. The 473 outpatient visits over 15 months yielded a total of 2,578 treatment recommendations, but only 1,390 adherence-facilitating behaviors by medical staff were documented. Providing information about how often to perform the recommendation was the most common staff behavior. In contrast, care providers rarely indicated that they addressed their patients' concerns and barriers to implementing the recommendations, or employed behavior modification strategies to increase adherence. Implications of these findings for development of programs designed to increase treatment adherence in children with chronic diseases requiring time-consuming, intrusive medical regimens are discussed.

Mineral metabolism in children with dermatomyositis.

OBJECTIVE: To measure calcium metabolism in 12 children with juvenile dermatomyositis (JDM). METHODS: We used dual-tracer stable isotope studies to measure calcium metabolism in 12 children with JDM and a group of 43 healthy children (Group HC) of similar ages. Five of the JDM subjects were receiving steroids (Group JDM-ST) and 7 were not (Group JDM-NS). RESULTS: The rate of calcium absorption in Group JDM-ST was lower than that in Group HC (19 +/- 10% vs 30 +/- 11%, p < 0.05). The lower rate of absorption was associated with a net loss of calcium each day (calculated calcium retention, Vbal, of -35 +/- 14 mg/day compared to +140 +/- 97 mg/day in Group HC, p < 0.01). Group JDM-NS showed slightly lower calcium absorption than Group HC and significantly lower Vbal (+33 +/- 70 mg/day, p < 0.01 vs Group HC) than Group HC. Group JDM-ST subjects also had decreased bone calcium deposition rates. CONCLUSION: Patients with JDM may be at risk for significant loss of bone mineral associated with decreased calcium absorption, especially in the acute phase of their disease when they are receiving steroid therapy.