Current pregnancy among women with spinal cord injury: findings from the US national spinal cord injury database.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To examine the prevalence of pregnancy and associations with sociodemographic and clinical factors among women with spinal cord injury (SCI). SETTING: US National Spinal Cord Injury Database, an SCI registry that interviews participants 1, 5 and then every 5 years post injury. Data include SCI clinical details, functional impairments, participation measures, depressive symptoms and life satisfaction. Women aged 18-49 are asked about hospitalizations in the last year relating to pregnancy or its complications. Data represent 1907 women, who completed 3054 interviews. METHODS: We used generalized estimating equations to examine bivariable associations between pregnancy and clinical and psychosocial variables and to perform multivariable regressions predicting pregnancy. RESULTS: Across all women, 2.0% reported pregnancy during the prior 12 months. This annual prevalence differed significantly by the years elapsed since injury; the highest rate occurred 15 years post injury (3.7%). Bivariable analyses found that younger age at injury was significantly associated with current pregnancy (P<0.0001). Compared with nonpregnant women, those reporting current pregnancy were significantly more likely to be married or partnered, have sport-related SCI, have higher motor scores and have more positive psychosocial status scores. Multivariable analyses found significant associations between current pregnancy and age, marital status, motor score and mobility and occupation scale scores. CONCLUSION: Current pregnancy rates among reproductive-aged women with SCI are similar to rates of other US women with chronic mobility impairments. More information is needed about pregnancy experiences and outcomes to inform both women with SCI seeking childbearing and clinicians providing their care.

Working-age persons with multiple sclerosis and access to disease-modifying medications.

US residents can face serious financial barriers to obtaining prescription medications, including disease-modifying medications for multiple sclerosis (MS). We conducted 30-min telephone surveys with 983 persons with MS nationwide, 21-64 years old, to explore how financial and health insurance concerns affect access to services including MS drugs. Almost everyone (96.3%) had some health insurance. Multivariable logistic regression analyses accounted for demographic, disease and insurance characteristics. Only 10.8% of those <40 years old had never received disease-modifying medications, compared with 41.1% of persons aged 60-64. Among the uninsured, 36.8% reported having never taken these medications, compared with 21.2% of persons with health insurance. Adjusted odds ratio (95% CI) of using these drugs in prior 12 months among the uninsured (compared with insured persons) was 0.28 (0.08, 0.95). Just over 16% of persons with public health plans reported that their insurer initially denied coverage for MS medication. When asked about MS medications in general, 22.3% reported having not filled prescriptions, skipping doses or splitting pills because of cost concerns; 22.4% worried ;a lot' about getting MS medications when they needed them. Substantial fractions of persons with MS confront financial and health plan-related barriers to obtaining MS drugs.

Health, disability, and life insurance experiences of working-age persons with multiple sclerosis.

Working-age Americans with multiple sclerosis (MS) may face considerable financial insecurities when they become unable to work and lack the health, disability, and life insurance typically offered through employers. In order to estimate the rates of having these insurance policies, as well as how insurance status affects reports of financial stress, we conducted half-hour telephone interviews with 983 working-age persons across the US, who reported being diagnosed with MS. The interviews occurred from May through November 2005, and among the sampled individuals contacted and confirmed eligible, 93.2% completed the interview. The study population was largely female (78.9%), Caucasian (86.4%), married (68.6%), with at least some college education (71.5%), and unemployed (60.2%). Overall, 96.3% had some health insurance (40.3% with public health insurance, primarily Medicare), 56.7% had long-term disability insurance (36.4% with public programs), and 68.3% had life insurance. Notably, 27.4% indicated that, since being diagnosed with MS, health insurance concerns had significantly affected employment decisions. In addition, 16.4% reported considerable difficulty paying for health care, 27.4% put off or postponed seeking needed health care because of costs, and 22.3% delayed filling prescriptions, skipped medication doses, or split pills because of costs. Overall, 26.6% reported considerable worries about affording even basic necessities, such as food, utilities, and housing.

Physician-reviewers' perceptions and judgments about quality of care.

OBJECTIVE: Although Peer Review Organizations (PROs) and researchers rely on physicians to assess quality of care, little is known about what physicians think about when they judge quality. We sought to identify features of individual cases that are associated with physicians' judgments. DESIGN: Using 1994 Medicare data, we selected hospitalizations for 1134 beneficiaries in 42 acute care hospitals in California and Connecticut. The sample was enriched with 17 surgical and six medical complications identified using diagnosis and procedure codes. PRO physicians confirmed quality problems using a structured implicit chart review instrument and provided written open-ended comments about each case. We coded physicians' comments for factors presumed to influence judgments about quality. RESULTS: In crude and adjusted comparisons, reviewers questioned quality more frequently in cases with serious or fatal outcomes, technical mishaps and inadequate documentation. Among surgical (but not medical) patients, they were less likely to record poor quality among patients presenting with an acute illness. CONCLUSION: Factors other than the adequacy of key processes of care are associated with physician-reviewers' judgments about quality.

Use of screening and preventive services among women with disabilities.

Roughly 54 million Americans have some disability; at older ages, women are more likely to be disabled than men. Many people with disabilities today live virtually normal life spans, and therefore routine screening and preventive services are essential to their overall quality of care. We used the 1994-1995 National Health Interview Survey (NHIS), with Disability, Family Resources, and Healthy People 2000 supplements, to examine screening and preventive service use for adult women with disabilities living in the community--about 18.4% of women (estimated 18.28 million). Disability was associated with higher age-adjusted rates of: poverty; living alone; low education; inability to work; obesity; and being frequently depressed or anxious. Disabled women generally reported screening and preventive services at rates comparable to all women. Women with major lower extremity mobility difficulties had much lower adjusted odds of Papanicolaou smears (odds ratio, 0.6; 95% confidence interval, 0.4-0.9), mammograms (odds ratio, 0.7; 95% confidence interval, 0.5-0.9), and smoking queries (odds ratio, 0.6; 95% confidence interval, 0.5-0.8). Various approaches exist to improve access for disabled women to health care services.

Mobility difficulties are not only a problem of old age.

BACKGROUND: Lower extremity mobility difficulties often result from common medical conditions and can disrupt both physical and emotional well-being. OBJECTIVES: To assess the national prevalence of mobility difficulties among noninstitutionalized adults and to examine associations with demographic characteristics and other physical and mental health problems. DESIGN: Cross-sectional survey using the 1994-1995 National Health Interview Survey-Disability Supplement (NHIS-D). We constructed measures of minor, moderate, and major lower extremity mobility difficulties using questions about ability to walk, climb stairs, and stand, and use of mobility aids (e.g., canes, wheelchairs). Age and gender adjustment used direct standardization methods in Software for the Statistical Analysis of Correlated Data (SUDAAN). PARTICIPANTS: Noninstitutionalized, civilian U.S. residents aged 18 years and older. National Health Interview Survey sampling weights with SUDAAN provided nationally representative population estimates. RESULTS: An estimated 19 million people (10.1%) reported some mobility difficulty. The mean age of those with minor, moderate, or major difficulty ranged from 59 to 67 years. Of those reporting major difficulties, 32% said their problems began at aged 50 years or younger. Adjusted problem rates were higher among women (11.8%) than men (8.8%), and higher among African American (15.0%) than whites (10.0%). Persons with mobility difficulties were more likely to be poorly educated, living alone, impoverished, obese, and having problems conducting daily activities. Among persons with major mobility difficulties, 30.6% reported being frequently depressed or anxious, compared to 3.8% for persons without mobility difficulties. CONCLUSIONS: Reports of mobility difficulties are common, including among middle-aged adults. Associations with poor performance of daily activities, depression, anxiety, and poverty highlight the need for comprehensive care for persons with mobility problems.

Mobility problems and perceptions of disability by self-respondents and proxy respondents.

BACKGROUND: The Americans With Disabilities Act defines disability on the basis of physical or mental impairments or external perceptions of impairment. OBJECTIVES: The objective of this study was to examine perceptions of disability among people with lower-extremity mobility difficulties. RESEARCH DESIGN: This study used a cross-sectional, nationally representative survey, the 1994 to 1995 National Health Interview Survey-Disability (NHIS-D) supplement. Using SAS-callable SUDAAN for all analyses, we produced national population estimates. SUBJECTS: This study included 142,572 noninstitutionalized, civilian residents of the United States who were > or =18 years of age, with 80,423 self-respondents and 49,883 proxy respondents. MEASURES: We created a 4-level mobility variable using NHIS-D questions about the ability to walk, climb stairs, stand and the use of mobility aids. We examined associations between mobility and answers to 2 questions about self- and external perceptions of disability. RESULTS: The results showed that 3.1% (estimated 5.82 million persons) reported major mobility difficulties, including 3.7% of self-respondents and 2.7% of those with proxy respondents. Among persons with major mobility problems, 70.8% perceived themselves as disabled, whereas 64.8% thought other people see them as disabled. Also, 80.5% of manual wheelchair users saw themselves as disabled. Proxies were somewhat more likely to perceive disability than self-respondents, although differences were not generally statistically significant. In multivariable regressions, mobility level was the strongest predictor of self-perceived disability, followed by general health status. CONCLUSIONS: Mobility problems increase the likelihood that people will see themselves as disabled, but these perceptions are not universal. Although the schematic of wheelchair users has become an international symbol of disability, many people with serious mobility problems do not view themselves as disabled.

Identification of in-hospital complications from claims data. Is it valid?

OBJECTIVES: This study examined the validity of the Complications Screening Program (CSP) by testing whether (1) ICD-9-CM codes used to identify a complication are coded completely and accurately and (2) the CSP algorithm successfully separates conditions present on admission from those occurring in the hospital. METHODS: We compared diagnosis and procedure codes contained in the Medicare claim with codes abstracted from an independent re-review of more than 1,200 medical records from Connecticut and California. RESULTS: Eighty-nine percent of the surgical cases and 84% of the medical cases had their CSP trigger codes corroborated by re-review of the medical record. For 13% of the surgical cases and 58% of the medical cases, the condition represented by the code was judged to be present on admission rather than occurring in-hospital. The positive predictive value of the claim was greater than 80% for the surgical risk pool, suggesting the value of the CSP as a screening tool. CONCLUSIONS: The CSP has validity as a screen for most surgical complications but only for 1 medical complication. The CSP does not have validity as a "stand-alone" tool to identify more than a few in-hospital surgery-related events. The addition of an indicator to the Medicare claim to capture the timing of secondary diagnoses would improve the validity of the CSP for identifying both surgical and medical in-hospital events.

Use of administrative data to find substandard care: validation of the complications screening program.

OBJECTIVE: The use of administrative data to identify inpatient complications is technically feasible and inexpensive but unproven as a quality measure. Our objective was to validate whether a screening method that uses data from standard hospital discharge abstracts identifies complications of care and potential quality problems. DESIGN: This was a case-control study with structured implicit physician reviews. SETTING: Acute-care hospitals in California and Connecticut in 1994. PATIENTS: The study included 1,025 Medicare beneficiaries greater than 265 years of age. METHODS: Using administrative data, we stratified acute-care hospitals by observed-to-expected complication rates and randomly selected hospitals within each state. We randomly selected cases flagged with 1 of 17 surgical complications and 6 medical complications. We randomly selected controls from unflagged cases. MAIN OUTCOME MEASURE: Peer-review organization physicians' judgments about the presence of the flagged complication and potential quality-of-care problems. RESULTS: Physicians confirmed flagged complications in 68.4% of surgical and 27.2% of medical cases. They identified potential quality problems in 29.5% of flagged surgical and 15.7% of medical cases but in only 2.1% of surgical and medical controls. The rate of physician-identified potential quality problems among flagged cases exceeded 25% in 9 surgical screens and 1 medical screen. Reviewers noted several potentially mitigating circumstances that affected their judgments about quality, including factors related to the patients' illness, the complexity of the case, and technical difficulties that clinicians encountered. CONCLUSIONS: For some types of complications, screening administrative data may offer an efficient approach for identifying potentially problematic cases for physician review. Understanding the basis for physicians' judgments about quality requires more investigation.

Does clinical evidence support ICD-9-CM diagnosis coding of complications?

BACKGROUND: Hospital discharge diagnoses, coded by use of the International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM), increasingly determine reimbursement and support quality monitoring. Prior studies of coding validity have investigated whether coding guidelines were met, not whether the clinical condition was actually present. OBJECTIVE: To determine whether clinical evidence in medical records confirms selected ICD-9-CM discharge diagnoses coded by hospitals. RESEARCH DESIGN AND SUBJECTS: Retrospective record review of 485 randomly sampled 1994 hospitalizations of elderly Medicare beneficiaries in Califomia and Connecticut. MAIN OUTCOME MEASURE: Proportion of patients with specified ICD-9-CM codes representing potential complications who had clinical evidence confirming the coded condition. RESULTS: Clinical evidence supported most postoperative acute myocardial infarction diagnoses, but fewer than 60% of other diagnoses had confirmatory clinical evidence by explicit clinical criteria; 30% of medical and 19% of surgical patients lacked objective confirmatory evidence in the medical record. Across 11 surgical and 2 medical complications, objective clinical criteria or physicians' notes supported the coded diagnosis in >90% of patients for 2 complications, 80% to 90% of patients for 4 complications, 70% to <80% of patients for 5 complications, and <70% for 2 complications. For some complications (postoperative pneumonia, aspiration pneumonia, and hemorrhage or hematoma), a large fraction of patients had only a physician's note reporting the complication. CONCLUSIONS: Our findings raise questions about whether the clinical conditions represented by ICD-9-CM codes used by the Complications Screening Program were in fact always present. These findings highlight concerns about the clinical validity of using ICD-9-CM codes for quality monitoring.

Patient-centered quality measures for Asian Americans: research in progress.

We aim to develop and validate a questionnaire that examines quality of care from the patient's perspective for limited-English-proficient Asian Americans (AA) of Chinese and Vietnamese descent. We will conduct focus groups of patients to identify issues important to them, with an emphasis on communication and access to care. We will then draft a questionnaire and test its validity using standard survey research methods and direct observation of patient-provider encounters. Subsequent field testing will involve face-to-face patient interviews 1 month after an outpatient visit. We will evaluate alternate modes of administration to test feasibility and to maximize response. The result of our study will be a validated, culturally sensitive, patient-centered instrument that measures health care quality for limited-English-proficient AA patients. Our research will provide a template for developing future quality measures for other vulnerable populations.

Mobility impairments and use of screening and preventive services.

OBJECTIVES: Primary care for people with disabilities often concentrates on underlying debilitating disorders to the exclusion of preventive health concerns. This study examined use of screening and preventive services among adults with mobility problems (difficulty walking, climbing stairs, or standing for extended periods). METHODS: The responses of non-institutionalized adults to the 1994 National Health Interview Survey, including the disability and Healthy People 2000 supplements, were analyzed. Multivariable logistic regressions predicted service use on the basis of mobility level, demographic characteristics, and indicators of health care access. RESULTS: Ten percent of the sample reported some mobility impairment; 3% experienced major problems. People with mobility problems were as likely as others to receive pneumonia and influenza immunizations but were less likely to receive other services. Adjusted odds ratios for women with major mobility difficulties were 0.6 (95% confidence interval [CI] = 0.4, 0.9) for the Papanicolaou test and 0.7 (95% CI = 0.5, 0.9) for mammography. CONCLUSIONS: More attention should be paid to screening and preventive services for people with mobility difficulties. Shortened appointment times, physically inaccessible care sites, and inadequate equipment could further compromise preventive care for this population.

Using diagnoses to describe populations and predict costs.

The Diagnostic Cost Group Hierarchical Condition Category (DCG/HCC) payment models summarize the health care problems and predict the future health care costs of populations. These models use the diagnoses generated during patient encounters with the medical delivery system to infer which medical problems are present. Patient demographics and diagnostic profiles are, in turn, used to predict costs. We describe the logic, structure, coefficients and performance of DCG/HCC models, as developed and validated on three important data bases (privately insured, Medicaid, and Medicare) with more than 1 million people each.

Principal inpatient diagnostic cost group model for Medicare risk adjustment.

The Balanced Budget Act (BBA) of 1997 required HCFA to implement health-status-based risk adjustment for Medicare capitation payments for managed care plans by January 1, 2000. In support of this mandate, HCFA has been collecting inpatient encounter data from health plans since 1997. These data include diagnoses and other information that can be used to identify chronic medical problems that contribute to higher costs, so that health plans can be paid more when they care for sicker patients. In this article, the authors describe the risk-adjustment model HCFA is implementing in the year 2000, known as the Principal Inpatient Diagnostic Cost Group (PIPDCG) model.

Does the Complications Screening Program flag cases with process of care problems? Using explicit criteria to judge processes.

BACKGROUND: The Complications Screening Program (CSP) aims to identify 28 potentially preventable complications of hospital care using computerized discharge abstracts, including demographic information, diagnosis and procedure codes. OBJECTIVE: To validate the CSP as a quality indicator by using explicit process of care criteria to determine whether hospital discharges flagged by the CSP experienced more process problems than unflagged discharges. METHODS: The (CSP was applied to computerized hospital discharge abstracts from Mledicare beneficiaries > 65 years old admitted in 1994 to hospitals in California and Connecticut for major surgery or medical treatment. ()f 28 CSP complications, 17 occurred sufficient frequently to study. Discharges flagged (cases) and unflagged (controls) by the (CSP were sampled and photocopied medical records were obtained. Physicians specified detailed, objective, explicit criteria, itemizing 'key steps' in processes of care that could potentially have prevented or caused complications. Trained nurses abstracted medical records using these explicit criteria. Process problem rates between cases and controls were compared. RESULTS: The final sample included 740 surgical and 416 medical discharges. Rates of process problems were high, ranging from 24.4 to 82.5% across CSP screens for surgical cases. Problems were lower for medical cases, ranging from 2.0 to 69.1% across CSP screens. Problem rates were 45.7% for surgical and 5.0% for medical controls. Rates of problems did not differ significantly across flagged and unflagged discharges. CONCLUSIONS: The CSP did not flag discharges with significantly higher rates of explicit process problems than unflagged discharges. Various initiatives throughout the USA use techniques similar to the CSP to identify complications of care. Based on these CSP findings, such approaches should be evaluated cautiously.

Explaining differences in English hospital death rates using routinely collected data.

OBJECTIVES: To ascertain hospital inpatient mortality in England and to determine which factors best explain variation in standardised hospital death ratios. DESIGN: Weighted linear regression analysis of routinely collected data over four years, with hospital standardised mortality ratios as the dependent variable. SETTING: England. SUBJECTS: Eight million discharges from NHS hospitals when the primary diagnosis was one of the diagnoses accounting for 80% of inpatient deaths. MAIN OUTCOME MEASURES: Hospital standardised mortality ratios and predictors of variations in these ratios. RESULTS: The four year crude death rates varied across hospitals from 3.4% to 13.6% (average for England 8.5%), and standardised hospital mortality ratios ranged from 53 to 137 (average for England 100). The percentage of cases that were emergency admissions (60% of total hospital admissions) was the best predictor of this variation in mortality, with the ratio of hospital doctors to beds and general practitioners to head of population the next best predictors. When analyses were restricted to emergency admissions (which covered 93% of all patient deaths analysed) number of doctors per bed was the best predictor. CONCLUSION: Analysis of hospital episode statistics reveals wide variation in standardised hospital mortality ratios in England. The percentage of total admissions classified as emergencies is the most powerful predictor of variation in mortality. The ratios of doctors to head of population served, both in hospital and in general practice, seem to be critical determinants of standardised hospital death rates; the higher these ratios, the lower the death rates in both cases.