Health-related quality of life as a predictor of pediatric healthcare costs: A two-year prospective cohort analysis

BACKGROUND: The objective of this study was to test the primary hypothesis that parent proxy-report of pediatric health-related quality of life (HRQL) would prospectively predict pediatric healthcare costs over a two-year period. The exploratory hypothesis tested anticipated that a relatively small group of children would account for a disproportionately large percent of healthcare costs. METHODS: 317 children (157 girls) ages 2 to 18 years, members of a managed care health plan with prospective payment participated in a two-year prospective longitudinal study. At Time 1, parents reported child HRQL using the Pediatric Quality of Life Inventory™ (PedsQL™ 4.0) Generic Core Scales, and chronic health condition status. Costs, based on health plan utilization claims and encounters, were derived for 6, 12, and 24 months. RESULTS: In multiple linear regression equations, Time 1 parent proxy-reported HRQL prospectively accounted for significant variance in healthcare costs at 6, 12, and 24 months. Adjusted regression models that included both HRQL scores and chronic health condition status accounted for 10.1%, 14.4%, and 21.2% of the variance in healthcare costs at 6, 12, and 24 months. Parent proxy-reported HRQL and chronic health condition status together defined a 'high risk' group, constituting 8.7% of the sample and accounting for 37.4%, 59.2%, and 62% of healthcare costs at 6, 12, and 24 months. The high risk group's per member per month healthcare costs were, on average, 12 times that of other enrollees' at 24 months. CONCLUSIONS: While these findings should be further tested in a larger sample, our data suggest that parent proxy-reported HRQL can be used to prospectively predict healthcare costs. When combined with chronic health condition status, parent proxy-reported HRQL can identify an at risk group of children as candidates for proactive care coordination

Between 'desperation' and disability rights: a narrative analysis of complementary/alternative medicine use by parents for children with Down syndrome

This paper presents a narrative analysis of complementary/alternative medicine (CAM) use by parents for children with Down syndrome (DS), based on interviews conducted with thirty families. Critics often presume that CAM use for children with developmental disabilities reflects parental desperation in the face of limited biomedical options. Integrating insights from anthropological studies of CAM with narrative analyses in disability studies, we constructively complicate this interpretation in two ways. First, we suggest that the appeal of CAM may lie in its discursive consonance with the broader narrative strategies through which parents construct alternatives to conventional definitions of DS as a condition with a fixed, universal, and essentially pathological course. Second, we submit that the process of seeking and evaluating information about CAM is consonant with how parents construct their identities as 'good' parents through describing their roles as committed advocates and service coordinators for their children. In these ways, CAM can be conceptualized as a new discursive resource that parents engage in their culturally and historically specific efforts to articulate the essential human rights of their children, and to assert the moral soundness of their own parenthood. These findings provide a new conceptualization of parents' motives for choosing CAM, thereby posing new questions for further research about CAM use for developmental disabilities.Complementary/alternative medicine Down syndrome Narrative analysis Disability studies Consumerism USA

Upper Gastrointestinal Bleeding from Gastric Amyloidosis in a Patient with Smoldering Multiple Myeloma

Amyloidosis is a common complication of patients with monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma (SMM), and multiple myeloma (MM). This proteinaceous material can be deposited intercellularly in any organ system, including the gastrointestinal (GI) tract. In the GI tract, amyloidosis affects the duodenum most commonly, followed by the stomach and colorectum. Gastric amyloidosis causes symptoms of nausea, vomiting, early satiety, abdominal pain, and GI bleeding. A case of upper GI bleeding from gastric amyloidosis is presented in a patient with SMM. Esophagogastroduodenoscopy (EGD) revealed a gastric mass. Endoscopic biopsies revealed amyloid deposition in the lamina propria, consistent with gastric amyloidosis. Liquid chromatography tandem mass spectrometry performed on peptides extracted from Congo red-positive microdissected areas of paraffin-embedded stomach specimens revealed a peptide profile consistent with AL- (lambda-) type amyloidosis. Based on this and multiple other case reports, we recommend that patients with GI bleeding and MGUS, SMM, or MM undergo EGD and pathologic examination of endoscopic biopsies of identified lesions using Congo red stains for amyloidosis for early diagnosis and treatment

Expression of LMO2 is associated with t(14;18)/IGH-BCL2 fusion but not BCL6 translocations in diffuse large B-cell lymphoma

Diffuse large B-cell lymphoma (DLBCL) can be separated for prognostic purposes using gene expression profiling (GEP) into 2 subgroups: germinal center B-cell (GCB) and activated B-cell phenotypes. However, GEP is impractical for routine clinical use, and immunophenotyping is an imperfect surrogate. Therefore, we studied the relationship between expression of the purported germinal center marker LMO2 and the presence of IGH-BCL2 fusions, BCL6 translocations, and LMO2 translocations. In addition, we investigated the usefulness of LMO2 expression as a marker of GCB subtype in DLBCL. Immunohistochemical and fluorescence in situ hybridization studies were successfully performed on 101 cases of de novo DLBCL that had been incorporated into a tissue microarray. There was a statistically significant association between IGH-BCL2 fusion and LMO2 protein expression (P = .02) but not between BCL6 translocations and LMO2 expression. LMO2 translocations were not identified. Although uncommon, all cases that had both IGH-BCL2 fusion and BCL6 translocations expressed LMO2. The findings suggest LMO2 as a potential marker for the GCB phenotype