Patient-reported outcome measures in dysphagia: a systematic review of instrument development and validation.

OBJECTIVE: Patient-reported outcome (PRO) measures are commonly used to capture patient experience with dysphagia and to evaluate treatment effectiveness. Inappropriate application can lead to distorted results in clinical studies. A systematic review of the literature on dysphagia-related PRO measures was performed to (1) identify all currently available measures and (2) to evaluate each for the presence of important measurement properties that would affect their applicability. DESIGN: MEDLINE via the PubMed interface, the Cumulative Index of Nursing and Allied Health Literature, and the Health and Psychosocial Instrument database were searched using relevant vocabulary terms and key terms related to PRO measures and dysphagia. Three independent investigators performed abstract and full text reviews. Each study meeting criteria was evaluated using an 18-item checklist developed a priori that assessed multiple domains: (1) conceptual model, (2) content validity, (3) reliability, (4) construct validity, (6) scoring and interpretation, and (7) burden and presentation. RESULTS: Of 4950 abstracts reviewed, a total of 34 dysphagia-related PRO measures (publication year 1987-2014) met criteria for extraction and analysis. Several PRO measures were of high quality (MADS for achalasia, SWAL-QOL and SSQ for oropharyngeal dysphagia, PROMIS-GI for general dysphagia, EORTC-QLQ-OG25 for esophageal cancer, ROMP-swallowing for Parkinson's Disease, DSQ-EoE for eosinophilic esophagitis, and SOAL for total laryngectomy-related dysphagia). In all, 17 met at least one criterion per domain. Thematic deficiencies in current measures were evident including: (1) direct patient involvement in content development, (2) empirically justified dimensionality, (3) demonstrable responsiveness to change, (4) plan for interpreting missing responses, and (5) literacy level assessment. CONCLUSION: This is the first comprehensive systematic review assessing developmental properties of all available dysphagia-related PRO measures. We identified several instruments with robust measurement properties in multiple diseases including achalasia, oropharyngeal dysphagia, post-surgical dysphagia, esophageal cancer, and dysphagia related to neurological diseases. Findings herein can assist clinicians and researchers in making more informed decisions in selecting the most fundamentally sound PRO measure for a given clinical, research, or quality initiative.

Evaluating the Impact of Performance Improvement Initiatives on Transplant Center Reporting Compliance and Patient Follow-Up After Living Kidney Donation.

With the changing demographics of the living donor population and increased regulatory oversight, it is important that transplant centers report outcomes accurately. The aim of our retrospective cohort study of 312 living donors who underwent nephrectomy between 2008 and 2013 was to evaluate the impact of living donor program performance improvement initiatives on: (i) transplant center program reporting compliance; (ii) patient compliance with postdonation follow-up and its associated factors; and (iii) overall financial costs to the transplant center. The effect of the initiatives (donation eras 2008-2010 and 2011-2013) on compliance at key reporting points (6 months, 1 year, 2 years) was analyzed using correlation coefficients, χ(2) and Fisher's exact tests. Multivariable logistic regression models tested the initiatives' effect on the likelihood of patient follow-up. The initiatives were associated with significant improvement in form reporting compliance (r ≥ 0.862, p ≤ 0.027; 1 and 2 year Fisher's Exact p ≤ 0.002) and patient follow-up (χ(2) p ≤ 0.009) with acceptable transplant center costs. Multivariable analyses demonstrated that donation era was consistently and significantly (p < 0.001) associated with increased likelihood of postdonation patient follow-up. Institution of performance improvement initiatives with dedicated program resources is financially feasible and leads to more accurate and complete form reporting and improved patient follow-up after nephrectomy.

A web-based application for initial screening of living kidney donors: development, implementation and evaluation.

Most centers utilize phone or written surveys to screen candidates who self-refer to be living kidney donors. To increase efficiency and reduce resource utilization, we developed a web-based application to screen kidney donor candidates. The aim of this study was to evaluate the use of this web-based application. Method and time of referral were tabulated and descriptive statistics summarized demographic characteristics. Time series analyses evaluated use over time. Between January 1, 2011 and March 31, 2012, 1200 candidates self-referred to be living kidney donors at our center. Eight hundred one candidates (67%) completed the web-based survey and 399 (33%) completed a phone survey. Thirty-nine percent of donors accessed the application on nights and weekends. Postimplementation of the web-based application, there was a statistically significant increase (p < 0.001) in the number of self-referrals via the web-based application as opposed to telephone contact. Also, there was a significant increase (p = 0.025) in the total number of self-referrals post-implementation from 61 to 116 per month. An interactive web-based application is an effective strategy for the initial screening of donor candidates. The web-based application increased the ability to interface with donors, process them efficiently and ultimately increased donor self-referral at our center.

Profile of health-related quality of life outcomes after liver transplantation: univariate effects and multivariate models.

AIM: To test the effects of pre- and post-transplant clinical covariates on post-transplant health-related quality of life (HRQOL) score profiles in liver transplant recipients. MATERIAL AND METHODS: HRQOL was measured before and after transplantation using the SF-36 Health Survey. Clinical data [diagnosis, model of end-stage liver disease (MELD) score, post-transplant rejection and infection episodes], pre-transplant functional performance (FP), and demographics were collected. Multivariate models for the eight SF-36 scales and two summary components were developed using multiple regression. Discriminant analysis was used to test whether the score profiles differentiated among recipients with and without hepatitis C virus (HCV) infection. RESULTS: 104 adults reported pre- and post-transplant HRQOL. Time post-transplant averaged 9+/-8 months (range 1-39). Scores on all SF-36 measures improved from pre- to post-transplant (p<0.001), and 7 of 10 models were significant (p<0.05). After controlling for pre-transplant HRQOL and time post-transplant, HCV infection had a negative effect on the role physical, bodily pain, and role emotional scales. History of a rejection episode had a negative effect on the bodily pain and vitality scales. MELD scores > or = 18 had a positive effect on the role physical scale. Pre-transplant FP and post-transplant infection episodes did not affect post-transplant HRQOL. HCV infection had a significant effect on the SF-36 score profile (canonical correlation=0.50; p<0.001). CONCLUSIONS: Pre-transplant HCV infection, MELD score, and post-transplant rejection episodes have significant independent effects on HRQOL after liver transplantation. Their specific effects vary among the individual SF-36 scales, and HRQOL score profiles differ among HCV+ and HCV- recipients.

The impact of a laparoscopic colorectal surgeon on the laparoscopic colectomy experience of a single academic center.

BACKGROUND: The objective of this study was to evaluate the impact of a laparoscopic colorectal surgeon (LCRS) on the laparoscopic colectomy experience of a single academic center. METHODS: We performed a retrospective review of case complexity, patient characteristics, operative and preparation time, and trends over time for the LCRS compared to two veteran laparoscopic surgeons (VLS). RESULTS: The LCRS performed 48 of the procedures (83%) and the VLS 10 (17%) for a total of 58 laparoscopic colon cases. The LCRS handled a greater number of complex cases (p = 0.07). For less complex cases, overall operative time differed for the two groups (LCRS = 220 +/- 11 vs VLS = 152 +/- 15 min, p = 0.004). Overall hospital stay was 4.8 +/- 0.6 days (range, 2-33). Minor complications occurred in 12 cases (21%); major complications in occurred in seven cases (12%). Among procedures performed by the LCRS, comparison of the first 24 cases to the second 24 demonstrated that operative and preparation time decreased in the second cohort (all p < 0.05). CONCLUSION: The addition of an LCRS had a significant impact on this center's experience with laparoscopic colectomies in terms of both volume and case complexity.

Health-related quality of life before and after solid organ transplantation. Measurement consideration, reported outcomes, and future directions.

The initial focus in organ transplantation clinical research was demonstrating acceptable technical and survival outcomes. Both patient and graft survival have reached well-documented, laudable levels, and solid organ (liver, heart, kidney, lung) transplantation procedures are now relatively common. As with any complex medical procedure that entails relatively high risk, financial costs, and life-long follow-up care, reliable and valid assessments of the "quality" of the extended life years are of interest to patients, their families, policy makers, and payers. This review focuses on health-related quality of life (HRQOL) and functional performance in adults following solid organ transplantation, with an emphasis on: 1) instruments and methods; 2) outcomes in liver, heart, kidney, and lung transplant recipients; and 3) future research directions. Practical considerations for developing longitudinal HRQOL assessment strategies are reviewed. The current emphasis on modeling demographic and clinical factors that promote or limit optimal HRQOL is illustrated. These lines of research will help identify potential interventions designed to promote better HRQOL in organ transplant recipients.

Decreased bone mineral density in Prader-Willi syndrome: comparison with obese subjects.

Bone density, anthropometric data, and markers of bone turnover were collected on 21 subjects diagnosed with Prader-Willi syndrome (PWS) and compared with 9 subjects with obesity of unknown cause. In addition, urinary N-telopeptide levels were obtained in all subjects. N-telopeptides are the peptide fragments of type I collagen, the major bone matrix material. During periods of active bone degradation or high bone turnover, high levels of N-telopeptides are excreted in the urine. However, no significant difference was detected in the urinary N-telopeptide levels when corrected for creatinine excretion (raw or transformed data) between our subjects with obesity or PWS and the observed effect size of the between-group difference was small. Although N-telopeptide levels were higher but not significantly different in the subjects with PWS compared with obese controls, the subjects with PWS had significantly decreased total bone and spine mineral density and total bone mineral content (all P < 0.001). No differences in N-telopeptide levels or bone mineral density were observed between subjects with PWS and chromosome 15q deletion or maternal disomy. Thus, decreased bone mineral density in subjects with PWS may relate to the lack of depositing bone mineral during growth when bones are becoming more dense (e.g., during adolescence), possibly because of decreased production of sex or growth hormones and/or long-standing hypotonia. It may not be caused by loss, or active degradation, of bone matrix measurable by the methods described in this study further supporting the possible need for hormone therapy during adolescence.

Kinetic form discrimination in Prader-Willi syndrome.

Discrimination of the shape of motion-produced forms generated by random elements (i.e. second-order stimuli varying in element density and temporal correlation) was tested in four groups: (1) subjects with Prader-Willi syndrome (PWS), chromosome 15q deletion subtype; (2) subjects with PWS, uniparental maternal disomy (UPD) subtype; (3) equivalent non-PWS controls; and (4) normal controls. The performance of the normal controls exceeded that of all other groups (78% correct, P < 0.009). The PWS deletion (66%) and the equivalent control groups (59%) did not differ (P < 0.95). The UPD group performed significantly less well (38%, P < 0.04) than all the other groups. The performance of the PWS deletion and equivalent control groups is consistent with other data indicating that these populations encounter difficulty meeting the processing demands posed by second-order stimuli. The inferior performance of the UPD group may be attributed to receiving two active alleles of a maternally expressed gene influencing neural development. One candidate is the ubiquitin protein ligase gene (UBE3A), which is maternally expressed only and localized to the 15q region. Other possibilities include the requirement of a paternally expressed gene, residual mosaic trisomy 15 in the brain tissue or complex interactions including specific ratios of differentially spliced gene products.

Emergence of compulsive behavior and tantrums in children with Prader-Willi syndrome.

Many adults with Prader-Willi syndrome are affected by behaviors such as tantrums, skin-picking, and compulsions. The nature and extent of these problems suggest more attention be directed to their emergence in childhood. Our purpose was to investigate behavior problems in children with this syndrome and identify the age at which these behaviors emerge. Parents of children with Prader-Willi syndrome, Down syndrome, and those developing typically completed questionnaires. Children with Prader-Willi syndrome exhibited more compulsions, skin-picking, and tantrums than did the other groups. A discriminant analysis of behavior variables derived two statistically significant functions that were interpreted as developmental milestones and problematic behavior. These functions correctly predicted membership for 79% of grouped cases.

Effect of dopamine infusion on hemodynamics after hepatic denervation.

BACKGROUND: . The effects of dopamine (DA) on systemic hemodynamics are better understood than its effects on hepatic hemodynamics, especially after liver denervation occurring during liver transplantation. Therefore, a porcine model was used to study DA's effects on hemodynamics after hepatic denervation. MATERIALS AND METHODS: Fifteen pigs underwent laparotomy for catheter and flow probe placement. The experimental group (n = 7) also underwent hepatic denervation. After 1 week, all pigs underwent DA infusion at increasing doses (3-30 mcg/kg/min) while measuring hepatic parameters [portal vein flow (PVF), hepatic artery flow (HAF), total hepatic blood flow (THBF = HAF + PVF), portal and hepatic vein pressures] and systemic parameters [heart rate (HR), mean arterial pressure (MAP)]. RESULTS: There was a significant increase in HAF from baseline to the 30 mcg/kg/min DA infusion rate (within-subjects P < 0.01), but the differences between the two groups were not significant. PVF and THBF showed large effects (increases) with denervation, but the increase in flow with DA infusion was not present after denervation. Perihepatic pressures were unchanged by denervation or DA. Heart rate differed significantly between the control and denervated animals at baseline, 3, 6, 12 (all P < 0.05), and 30 mcg/kg/min DA (P = 0.10). Control vs denervation MAP at baseline was 100 +/- 4 vs 98 +/- 4 Torr and at 30 mcg/kg/min it was 110 +/- 3 vs 101 +/- 5 mm Hg. CONCLUSIONS: Hepatic flows tended to be higher after denervation. HAF showed similar increases with DA in both control and denervation groups. Increases in PVF and THBF with DA infusion were not present after denervation. HR was significantly decreased and MAP tended to be lower after denervation. The HR and MAP response to DA was similar in both groups. Therefore, both denervation and DA infusion have an effect on systemic and hepatic hemodynamics.

Plasma cholecystokinin levels in Prader-Willi syndrome and obese subjects.

The cardinal feature of individuals with Prader-Willi syndrome (PWS) is severe hyperphagia-mediated obesity resulting from a faulty satiety mechanism. PWS is the most common genetic cause of marked obesity. Cholecystokinin (CCK) is a 33-amino-acid peptide found in high levels in the gut and brain involved in mediating the satiety response to meals. Free fatty acids (FFA) are responsible for the stimulation of CCK release after a fatty meal, and CCK and plasma FFA levels rise in tandem in normal individuals. Fasting plasma CCK levels were measured by radio-immunoassay in 33 PWS subjects with a mean age of 22.2 years +/- 8.1 years and 24 obese control subjects without a known cause of their obesity with a mean age of 28.7 years +/- 12.9 years. Consistent with previous findings, neither fasting plasma FFA levels (617.5 versus 486.8 microm/mL) or CCK levels (21.0 versus 19.1 pg/mL) were significantly different in PWS or control subjects, respectively. However, there was a significant correlation between fasting plasma FFA and CCK levels in obese subjects (r = 0. 64, P < 0.01), this correlation was completely lacking in PWS subjects (r = -0.06, P = 0.79). This difference in correlation coefficients constitutes a large effect. There were no significant effects observed for genetic subtypes (15q11-q13 deletion or maternal disomy 15), body mass index, percentage of fat, plasma levels of insulin, C-peptide, glucagon or leptin, age, or gender on CCK levels in our PWS subjects. These results suggest that differences in the peripheral CCK response to FFA levels may be a factor contributing to the altered satiety response in PWS subjects.

Health-related quality of life after different types of solid organ transplantation.

OBJECTIVE: To describe functional health and health-related quality of life (QOL) before and after transplantation; to compare and contrast outcomes among liver, heart, lung, and kidney transplant patients, and compare these outcomes with selected norms; and to explore whether physiologic performance, demographics, and other clinical variables are predictors of posttransplantation overall subjective QOL. SUMMARY BACKGROUND DATA: There is increasing demand for outcomes analysis, including health-related QOL, after medical and surgical interventions. Because of the high cost, interest in transplantation outcomes is particularly intense. With technical surgical experience and improved immunosuppression, survival after solid organ transplantation has matured to acceptable levels. More sensitive measures of outcomes are necessary to evaluate further developments in clinical transplantation, including data on objective functional outcome and subjective QOL. METHODS: The Karnofsky Performance Status was assessed objectively for patients before transplantation and up to 4 years after transplantation, and scores were compared by repeated measures analysis of variance. Subjective evaluation of QOL over time was obtained using the Short Form-36 (SF-36) and the Psychosocial Adjustment to Illness Scale (PAIS). These data were analyzed using multivariate and univariate analysis of variance. A summary model of health-related QOL was tested by path analysis. RESULTS: Tools were administered to 100 liver, 94 heart, 112 kidney, and 65 lung transplant patients. Mean age at transplantation was 48 years; 36% of recipients were female. The Karnofsky Performance Status before transplantation was 37 +/- 1 for lung, 38 +/- 2 for heart, 53 +/- 3 for liver, and 75 +/- 1 for kidney recipients. After transplantation, the scores improved to 67 +/- 1 at 3 months, 77 +/- 1 at 6 months, 82 +/- 1 at 12 months, 86 +/- 1 at 24 months, 84 +/- 2 at 36 months, and 83 +/- 3 at 48 months. When patients were stratified by initial performance score as disabled or able, both groups merged in terms of performance by 6 months after liver and heart transplantation; kidney transplant patients maintained their stratification 2 years after transplantation. The SF-36 physical and mental component scales improved after transplantation. The PAIS score improved globally. Path analysis demonstrated a direct effect on the posttransplant Karnofsky score by time after transplantation and diabetes, with trends evident for education and preoperative serum creatinine level. Although neither time after transplantation nor diabetes was directly predictive of a composite QOL score that incorporated all 15 subjective domains, recent Karnofsky score and education level were directly predictive of the QOL composite score. CONCLUSIONS: Different types of transplant patients have a different health-related QOL before transplantation. Performance improved after transplantation for all four types of transplants, but the trajectories were not the same. Subjective QOL measured by the SF-36 and the PAIS also improved after transplantation. Path analysis shows the important predictors of health-related QOL. These data provide clearly defined and widely useful QOL outcome benchmarks for different types of solid organ transplants.

Appetitive behavior, compulsivity, and neurochemistry in Prader-Willi syndrome.

Advances in genetic research have led to an increased understanding of genotype-phenotype relationships. Excessive eating and weight gain characteristic of Prader-Willi syndrome (PWS) have been the understandable focus of much of the research. The intense preoccupation with food, lack of satiation, and incessant food seeking are among the most striking features of PWS. It has become increasingly clear that the behavioral phenotype of PWS also includes symptoms similar to obsessive compulsive disorder, which in all probability interact with the incessant hunger and lack of satiation to engender the intense preoccupation and food seeking behavior that is characteristic of this disorder. Several lines of evidence suggest that genetic material on chromosome 15 may alter synthesis, release, metabolism, binding, intrinsic activity, or reuptake of specific neurotransmitters, or alter the receptor numbers and/or distribution involved in modulating feeding. Among the likely candidates are GABAnergic, serotonergic, and neuropeptidergic mechanisms. This review summarizes what is known about the appetitive behavior and compulsivity in PWS and discusses the possible mechanisms underlying these behaviors. MRDD Research Reviews 2000;6:125-130.

Intellectual characteristics of Prader-Willi syndrome: comparison of genetic subtypes.

Advances in genetics have led to an increased understanding of the role of the genotype on behavioural functioning. The purpose of the present study was to examine differences in intellectual functioning in individuals with Prader-Willi syndrome (PWS) with a paternal 15q11-q13 deletion versus maternal uniparental disomy (UPD) of chromosome 15. Measures of intelligence and academic achievement were administered to 38 individuals with PWS (24 with deletion and 14 with UPD). The subjects with UPD had significantly higher verbal IQ scores than those with deletion (P< 0.01). The magnitude of the difference in verbal IQ was 9.1 points (69.9 versus 60.8 for UPD and deletion PWS subjects, respectively). Only 17% of subjects with the 15q11-q13 deletion had a verbal IQ > or = 70, while 50% of those with UPD had a verbal IQ > or = 70. Performance IQ scores did not differ between the two PWS genetic subtype groups. This is the first report to document the difference between verbal and performance IQ score patterns among subjects with PWS of the deletion versus the UPD subtype.

Effect of dopamine infusion (3-30 microg/kg/min) on hepatic hemodynamics.

BACKGROUND: While dopamine produces well-characterized dose-dependent effects on systemic hemodynamics, there is a paucity of information regarding its effects on hepatic hemodynamics. Infusion rates above 10 microg/kg/min are reported to produce significant vasoconstriction and impair organ perfusion. Therefore, donors are sometimes considered unsuitable when higher doses of dopamine are in use. The aim of this study was to determine the effect of increasing doses of dopamine on hepatic hemodynamics in a nonanesthetized swine model. MATERIALS AND METHODS: Sixteen pigs were instrumented with indwelling catheters in a peripheral artery, peripheral vein, portal vein, and hepatic vein and flow probes around the portal vein and hepatic artery. After recovery, the following variables were measured 10 +/- 1 days postinstrumentation: hepatic arterial flow (HAF), portal venous flow (PVF), mean systemic arterial pressure (MAP), central venous pressure (CVP), portal venous pressure (PVP), hepatic venous pressure (HVP), heart rate (HR). Recordings were obtained at baseline and subsequently when dopamine was infused at rates of 3, 6, 12, 15, 21, and 30 microg/kg/min increasing at 1-h intervals. RESULTS: HAF and PVF increased linearly over the entire infusion range, to 69 and 13% over baseline, respectively (P < 0.001, P < 0.05). Total hepatic blood flow rose 23% over baseline at the 30 microg/kg/min dosage (P < 0.01). MAP increased linearly 13% over the range 12 to 30 microg/kg/min (P < 0.001). CVP, HVP, and PVP did not change significantly. HR decreased from 12 to 15 microg/kg/min (P < 0.01), then increased from 15 to 30 microg/kg/min (P < 0.05). CONCLUSION: These data show that dopamine infused at dosages of 3-30 microg/kg/min augments HAF, PVF, and THBF and that this effect is linear. These results suggest high-dose dopamine infusion does not disqualify a potential donor liver for transplantation.

Self-injurious behavior and Prader-Willi syndrome: behavioral forms and body locations.

With few exceptions (e.g., Lesch-Nyhan syndrome), the specific nature of self-injury in relation to identified genetic syndromes associated with mental retardation is poorly understood. In the present study we surveyed the families of 62 persons with Prader-Willi syndrome to determine the prevalence, topographies, and specific body locations of self-injurious behavior. Self-injury was reported for 81% of the participants. Skin-picking was the most prevalent form, with the front of the legs and head being disproportionately targeted as preferred self-injury body sites. Individuals with the 15q11-q13 deletion injured significantly more body sites than did individuals with maternal disomy 15. Results are discussed in relation to previous self-injury body site findings and implications for the relevance of syndrome-specific behavioral phenotypes.

Visual capacity and Prader-Willi syndrome.

PURPOSE: Prader-Willi syndrome (PWS) refers to a genetic disorder induced by an anomaly on chromosome 15 occurring with a frequency of one in 10,000 to 20,000. It is characterized by a unique set of features including infantile hypotonia, obesity in childhood, small hands and feet, hypogonadism, and mental retardation. Reported here are the results of ophthalmic examinations of persons with PWS, together with results from controls comparable in age, percentage of body fat, and intelligence. These data bear on the hypothesis that the ocular anomalies in PWS are unique to this syndrome. METHOD: A comprehensive investigation of PWS brought children and adults to Vanderbilt University for extended testing, which included an ophthalmic examination. Genetic analysis determined unequivocally the PWS diagnosis and identified subgroups-deletion and maternal disomy. A group of persons without PWS but generally comparable in age, body composition, and intelligence served as controls. RESULTS: Significant differences between the deletion and disomy subgroups were not found for the clinical ophthalmic measures. The incidence of anomalies in the combined PWS was similar to those reported in previous studies. A similar pattern was present in the control group except for myopia and stereopsis. An effect of genetic subgroup, however, was observed for random element stereopsis with the maternal disomy group having a greater degree of impairment. CONCLUSION: The overall similarity between the PWS and control groups on all measures except myopia and stereopsis suggest that many of the anomalies in PWS found in prior studies are due to factors inherent in a general dysfunctional population, rather than reflective of an ocular signature unique to PWS.

Genetic variants of the human obesity (OB) gene in subjects with and without Prader-Willi syndrome: comparison with body mass index and weight.

We investigated whether an association exists between genetic variants of the human obesity (OB or leptin) gene and body mass index (BMI) or weight in subjects with Prader Willi syndrome (PWS) and in age- and gender-matched lean and obese subjects without PWS. The study included 51 subjects with PWS (mean age = 17.7 +/- 9.5 years, BMI = 29.7 +/- 8.3 kg/m2); 50 non-PWS obese subjects (mean age = 18.2 +/- 10.8 years, BMI = 33.3 +/- 9.5 kg/m2); and 53 non-PWS lean subjects (mean age = 17.8 +/- 9.5 years, BMI = 19.5 +/- 2.9 kg/m2). Allele sizes were determined via standard polymerase chain reaction of the D7S1875 locus, a dinucleotide repeat polymorphism close to the OB gene and classified as trichotomous (homozygous < 208 bp, heterozygous < 208/ > or = 208 bp, homozygous > or = 208 bp) or dichotomous (homozygous < 208 bp or not). Non-PWS males showed a marked decrease in weight with larger alleles while females did not (interaction effect, p < 0.05). Comparable effects were not observed among the PWS subjects. Associations between BMI and genotype were statistically significant (r = 0.22, one-tailed p < 0.05) and comparable to previous research among the non-PWS subjects < 18 years, but not the adults (r = 0.05, one-tailed p = 0.38). Correlations were not statistically significant among either the adult or non-adult PWS subjects.

An analysis of concordance among hospital databases and physician records.

BACKGROUND: Hospital databases contain vital demographic patient information, which is increasingly being used as a basis to dictate care. It is hypothesized that the validity of data administratively generated from such sources is suboptimal, especially for rare subspecialties. The authors examined three databases to determine their concordance in an academic orthopaedic oncology subspecialty practice. METHODS: A 2-year retrospective review was performed on three databases searching for seven fundamental variables: additions/deletions; identification number; birthdate; procedure date; admit/discharge date; procedure code; and diagnostic code. Two university-maintained hospital databases (medical records and physician billing) were compared to the surgeon's personal handwritten daily log, which served as the "gold standard." RESULTS: All seven variables were in agreement with the physician's log in only 60% of the medical records and 61% of the physician billing patient entries (n = 564). On more detailed statistical analysis using chi(2), cross tabulations, and the K statistic for interobserver agreement, it was determined that poor concordance exists among the databases. CONCLUSION: Surgeons delivering quartenary care should maintain his or her own database because the hospital's information often differs on one or more important variables. Further investigation into the accuracy of hospital databases regarding commonly practiced medical disciplines appears warranted.