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PubMed2006

Resource allocation for community-based therapy.

PURPOSE: Adequate and equitable resourcing of services for children with disabilities and their families is a challenge that is faced by agencies as the growth in client numbers outstrips any increase in available funding. While funding models have been developed within the acute health care and education sectors, there have been few attempts to develop funding models for therapy (occupational therapy, physiotherapy, psychology, and speech pathology) provided within community-based, paediatric disability services. This paper outlines a model for allocating staff resources to provide therapy services for children with physical disabilities based on a project conducted by Novita Children's Services (formerly the Crippled Children's Association of South Australia, Inc.). METHOD: Services were mapped using a framework based on the International Classification of Function developed by the World Health Organization and adopted by the Australian Institute of Health and Welfare. An action research methodology was employed that included focus groups held with staff to identify potential resource drivers; collection of travel time data, client caseload numbers; and developing profiles of services and client groups. A model for allocating staff time was developed to reflect the differing service demands, travel time, leave allowances and time for activities to develop the social environment for individuals with disabilities. RESULTS AND CONCLUSIONS: Analysis indicated that the drivers of staff resources were the type of service delivery (early intervention versus school aged services), model specific (e.g., time required to provide community-based services and work within multi-disciplinary teams), and specific client (need for complex technology or equipment; school/preschool transition times; high health care needs due to dysphagia, deteriorating conditions with changing needs, or post surgery/medication rehabilitation) and family well-being issues. While further data collection and refinement of the model is needed, it provides the organization with more objective and equitable resource allocation and enables improved advocacy for client needs.

Child↗
PubMed2003

Developing a human immunodeficiency virus/acquired immunodeficiency syndrome therapeutic research agenda for resource-limited countries: a consensus statement.

To develop a research agenda for use of antiretroviral therapy (ART) in countries with highly limited resources for health, research questions focused on 3 areas: when therapy should be initiated, what therapies should be used, and the most appropriate methods for patient monitoring. Participants from 23 countries and 6 continents were clinical and academic researchers, health care practitioners, policy authorities, pharmaceutical experts, and health care advocates. The conference attendees reviewed background materials and participated in 13 state-of-the-art presentations on ART provision in resource-limited countries, treatment access, ethics, community issues, and sustainability. Conferees separated into smaller groups to identify priorities for specific research agendas. Existing multinational human immunodeficiency virus (HIV) clinical trials networks, such as the HIVNAT (The Netherlands, Australia, and Thailand) Network, were studied as infrastructure models for research into affordable, sustainable treatment and monitoring strategies suitable for resource-limited settings. The delivery of ART in resource-limited countries is a vital priority for health care providers and the millions of people living with HIV disease. To achieve sustainable approaches to HIV/acquired immunodeficiency syndrome care, research relevant to resource-limited settings must involve local researchers and community representatives to promote development of local capacity.

Clinical Trials as Topic↗
PubMed1998

Medical-resource use for suspected tuberculosis in a New York City hospital.

OBJECTIVE: To compare resource use by diagnostic outcome among hospital admissions during which tuberculosis (TB) was suspected. DESIGN: Retrospective study based on chart review and microbiology laboratory data. SETTING: The department of medicine in a municipal hospital serving central Brooklyn, New York. PARTICIPANTS: We identified all adult admissions in 1993 during which TB was suspected. We assigned each admission to one of four mutually exclusive groups defined by the results of microbiological tests (acid-fast bacilli [AFB] smear and culture): culture-positive and smear-positive (C+S+); culture-positive and smear-negative (C+S-); culture-negative and smear-positive (C-S+); or culture-negative and smear-negative (C-S-). Each admission was divided into two separate periods to which the utilization of medical resources was assigned: the diagnostic and the postdiagnostic periods, which were separated by the date of receipt of the first definitive culture report. RESULTS: Data on 519 admissions (93 C+S+; 57 C+S-; 30 C-S+; and 339 C-S-) were analyzed. Although C+S+ were more likely than other groups to have an admitting diagnosis of TB, approximately one quarter of the admissions without TB (C-S+, C-S-) were admitted with the principal diagnosis of TB. For the four groups, C+S+, C+S-, C-S+, and C-S-, the respective rates of TB isolation and anti-TB treatment, and median lengths of isolation were 98%, 87%, and 34 days; 74%, 74%, and 7 days; 83%, 83%, and 15 days; and 44%, 29%, and 0 days. During the diagnostic period, the rate and length of isolation were similar in the AFB-smear-positive groups (C+S+ and C-S+). We estimated that admissions without culture-proven TB (C-S+ and C-S-) accounted for 3,174 (36%) of the 8,712 days of TB isolation expended and for 65% of the 16,671 days of anti-TB treatment. The vast majority of this resource consumption (2,737 [86%] of 3,174 days of isolation) occurred during the diagnostic period before a definitive culture result was known. CONCLUSIONS: Our results suggest that prolonged diagnostic uncertainty and misclassification of cases due to false-positive and false-negative smears are associated with substantial medical-resource consumption. New diagnostic modalities that reduce the period of diagnostic uncertainty could reduce the utilization of resources later found to be unnecessary.

Adult↗
PubMed2004

The systemic lupus erythematosus Tri-nation Study: absence of a link between health resource use and health outcome.

OBJECTIVE: Health consumption and health status in SLE in three countries with different health funding structures were compared. METHODS: Seven hundred and fifteen SLE patients (Canada 231, USA 269, UK 215) were surveyed semi-annually over 4 yr for health resource utilization and health status. Cross-country comparisons of (i) cumulative health expenditure (calculated by applying 2002 Canadian prices to resources in all countries) and (ii) disease damage (Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index, SLICC/ACR DI) at study conclusion were performed after adjustment. Missing expenditure and damage data were managed through multiple imputation using best predictive regressions with all available data from all patients as potential covariates. RESULTS: Four hundred and eighty-five patients provided data at study entry and conclusion and at least four resource questionnaires (Canada 162, USA 157, UK 166); 41 died (Canada 13, USA 18, UK 10); 189 withdrew, were lost to follow-up or provided data at entry and conclusion but fewer than four resource questionnaires (Canada 56, USA 94, UK 39). At conclusion, after imputation, in Canada, the USA and the UK respectively, mean cumulative costs per patient over 4 yr [95% confidence interval (CI)] were $15,845 (13,509, 18,182), $20,244 (17,764, 22,724) and $17,647 (15,557, 19,737) and mean changes in SLICC/ACR DI were 0.49 (0.39, 0.60), 0.63 (0.52, 0.74) and 0.48 (0.39, 0.57). After adjustment for baseline differences, on average (95% CI), Canadian and British patients utilized 20% (8%, 32%) and 13% (1%, 24%) less resources than patients in the USA respectively, but experienced similar health outcomes. CONCLUSION: Despite patients in the USA incurring higher health expenditures, they did not experience superior health outcomes.

Adult↗
PubMed2003

Doubts about DOT: antiretroviral therapy for resource-poor countries.

INTRODUCTION: Directly observed therapy programs developed for tuberculosis (TB) have been suggested as a model for the provision of HIV medications in resource-poor countries in order to ensure adherence and prevent drug resistance. METHODS: Opinions were formed based on a review of scientific literature regarding the effectiveness of witnessed dosing in directly observed TB therapy programs, adherence to HIV antiretroviral therapy in resource-rich and resource-poor settings, relationship between adherence and HIV antiretroviral drug resistance, HIV viral load and risk of HIV transmission, and stigmatization concerns related to HIV and TB in resource-poor settings. RESULTS/CONCLUSIONS: We suggest that the enthusiasm for HIV directly observed therapy programs is premature based on: equivocal evidence that witnessed dosing is superior to self administered therapy; mistaken assumptions that resource-poor countries are a 'special case' with respect to adherence; possible paradoxical impact of good adherence on HIV drug resistance; unproven efficacy of antiretroviral therapy in preventing HIV transmission; and potential stigmatization of daily antiretroviral dosing.

Acquired Immunodeficiency Syndrome↗
PubMed1997

Resource support and heart patient recovery.

This prospective study examines the effects of resources utilized by myocardial infarction (MI) and coronary artery bypass (BY) patients in the recovery process. The resource support model incorporates formal (institutionalized) and semi-formal (mutual aid) services along with informal assistance (social networks). Patient interview data were collected on 147 MI and 159 BY patients at hospitalization and at 3 months. Sociodemographic, illness and resource data were obtained, and hospital records were abstracted. Two outcomes were evaluated: activity limitations and work capacity. Bivariate and multivariate analyses were used to assess individual and resource effects. Multivariate analyses revealed that, for MI patients, a higher level of activity prior to hospitalization and a shorter hospital stay were significantly related to recovery. A smaller social network with greater frequency of contact enhanced recovery. For BY patients, recovery was significantly associated with higher social class higher level of activity prior to hospitalization and fewer health care visits. Outcome based on work capacity revealed that MI patients who were younger in age, male sex and who had fewer prescribed medications were more likely to recover. By patients had a similar pattern as that observed for MI patients in terms of age and sex. Co-morbidity had a negative effect on recovery. Those with less affective informal support were more likely to have recovered. The resource support model employed in this prospective study proved to have mixed results. However, the model may be a useful multifactorial framework for examining the effects on patient recovery over a longer duration.

Activities of Daily Living↗
PubMed2006

Nonsurgical resource utilization in adult spinal deformity.

STUDY DESIGN: The enrollment data were retrospectively reviewed for 1,061 patients entered into a prospective multicenter study of adult spinal deformity between January 2002 and June 2004. OBJECTIVE: The purpose of this study is to quantify and analyze the use of nonsurgical resources in patients with adult spinal deformity. SUMMARY OF BACKGROUND DATA: Limited data exist regarding the utilization of nonsurgical treatment methods for adult spinal deformity. METHODS: Demographic data, surgical history, symptom assessment, and nonsurgical treatment regimen were reviewed. Health status measures were the SF-12, SRS-29, and ODI. Nonsurgical patients were divided into low- and high-symptom subgroups based on age adjusted ODI score. Resource utilization was analyzed based on both patient and physician questionnaire responses. RESULTS: High- and low-symptom nonsurgical subgroups differed significantly on all reported health status measures (P < 0.0001). High-symptom patients used greater resources in terms of narcotics, epidural blocks, and physical agent methods (P < 0.001), analgesics (P < 0.01), pain management referral and bed rest (P < 0.02), strength training, nerve root blocks, and stabilization exercises (P < 0.05). CONCLUSIONS: The results of this study demonstrate that, within the population of adult deformity patients, distinct high- and low-symptom groups exist and can be clearly identified. While high-symptom patients used significantly greater resources, most low-symptom patients used nonsurgical resources as well.

Adult↗
PubMed2003

Neurologic intensive care resource use after brain tumor surgery: an analysis of indications and alternative strategies.

OBJECTIVE: Greater demand and limited resources for intensive care monitoring for patients with neurologic disease may change patterns of intensive care unit utilization. The necessity and duration of intensive care unit management for all neurosurgical patients after brain tumor resection are not clear. This study evaluates a) the preoperative and perioperative variables predictive of extended need for intensive care unit monitoring (>1 day); and b) the type and timing of intensive care unit resources in patients for whom less intensive postoperative monitoring may be feasible. DESIGN: Retrospective chart review. SETTING: A neurocritical care unit of a university teaching hospital. PATIENTS: Patients were 158 consecutive postoperative brain tumor resection patients admitted to a neurocritical care unit within a 1-yr period (1998-1999). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Twenty-three patients (15%) admitted to the neurocritical care unit for >24 hrs were compared with 135 (85%) patients admitted for <24 hrs. Predictors of >1-day stay in the neurocritical care unit in a logistic regression model were a tumor severity index comprising radiologic characteristics of tumor location, mass effect, and midline shift on the preoperative magnetic resonance imaging scan (odds ratio, 12.5; 95% confidence interval, 3.1-50.5); an intraoperative fluid score comprising estimated blood loss, total volume of crystalloid, and other colloid/hypertonic solutions administered (odds ratio, 1.8; 95% confidence interval, 1.2-2.6); and postoperative intubation (odds ratio, 67.5; 95% confidence interval, 6.5-702.0). Area under the receiver operating characteristic curve for the model of independent predictors for staying >1 day in the neurocritical care unit was 0.91. Neurocritical care unit resource use was reviewed in detail for 134 of 135 patients who stayed in the neurocritical care unit for <1 day. Sixty-five (49%) patients required no interventions beyond postanesthetic care and frequent neurologic exams. A total of 226 intensive care unit interventions were performed (mean +/- sd, 1.7 +/- 2.6) in 69 (51%) patients. Ninety (67%) patients had no further interventions after the first 4 hrs. Neurocritical care unit resource use beyond 4 hrs, largely consisting of intravenous analgesic use (72% of orders), was significantly associated with female gender, benign tumor on frozen section biopsy, and postoperative intubation (chi-square, p <.05). CONCLUSIONS: A small fraction of patients require prolonged intensive care unit stay after craniotomy for tumor resection. A patient's risk of prolonged stay can be well predicted by certain radiologic findings, large intraoperative blood loss, fluid requirements, and the decision to keep the patient intubated at the end of surgery. Of those patients requiring intensive care unit resources beyond the first 4 hrs, the interventions may not be critical in nature. A prospective outcome study is required to determine feasibility, cost, and outcome of patients cared for in extended recovery and then transferred to a skilled nursing ward.

Aged↗
PubMed2005

Hospital health care resource utilization and costs of colorectal cancer during the first 3-year period following diagnosis in Switzerland.

BACKGROUND: In industrialized countries, colorectal cancer is a leading cause of morbidity and mortality. Decisions on colorectal cancer screening are based on cost-effectiveness analyses that rely on colorectal cancer cost studies. Additionally, the study of the resource utilization pattern may lead to cost-saving strategies in the care of colorectal cancer. AIM: To estimate hospital resource utilization, the use of various therapy modalities and costs of colorectal cancer cases undergoing surgery during the first 3 years following the diagnosis at a Swiss university hospital. METHODS: Consecutive colorectal cancer patients from 1997 to 1998 were identified using the surgery database of the University Hospital of Basel and followed for a period of 3 years. In-hospital resource utilization and costs were retrieved from the computerized administrative records. Treatment outside of the hospital during the study period constituted an exclusion criterion. RESULTS: Eighty-three (94%) of 89 patients undergoing surgery for colorectal cancer were included in the study, 58 with colon cancer and 25 with rectal cancer. The average ages were 70.3 and 63.6 years, respectively. Overall, 59% of the patients were treated with surgery alone, 27% also had chemotherapy and 15% received additional chemoradiotherapy. These percentages and resource utilization varied broadly between the two colorectal cancer groups. On average, patients were admitted to the hospital 2.7 times and the hospital length of stay amounted to 35 days. They were visited by doctors 69 times, and examined with colonoscopy, ultrasonography and computerized tomography 2.7, 3.2 and 2.4 times, respectively. Mean costs incurred for rectal cancer (US dollars 40,230) were about 22% higher than for colon cancer patients (US dollars 33,079). Hospitalization and surgical therapy generated the greatest costs. Expenses were highest for the first year and with more severe disease stages at diagnosis. CONCLUSIONS: Colorectal cancer is an expensive disease. Economic analyses on screening should take into account the large resource utilization and cost variability by performing sensitivity analysis on broad cost ranges. Furthermore, they should consider stage shifting at diagnosis and include stage-specific costs.

Adult↗
PubMed2005

Is gastric electrical stimulation superior to standard pharmacologic therapy in improving GI symptoms, healthcare resources, and long-term health care benefits?

CONTEXT: Severe upper gastrointestinal (GI) motor disorders, including gastroparesis (GP), can consume significant health care resources. Many patients are refractory to traditional drug therapy. OBJECTIVE: To compare symptoms, healthcare resource utilization and costs in two groups of patients with the symptoms of GP: those treated via gastric electrical stimulation (GES) and those treated with traditional pharmacological agents in an intensive outpatient program (MED). DESIGN: A long-term comparison of patients with devices (n = 9) vs intensive medical therapy (n = 9). SETTING AND PATIENTS: A total of 18 eligible patients with the symptoms of GP reported for 1-year baseline and long-term treatment for 3 years. INTERVENTIONS: Patients with the symptoms of GP were treated by a GES or intensive medical therapy (MED). MAIN OUTCOME MEASURES: GP Symptoms, healthcare resource utilization using investigator-derived independent outcome measure score (IDIOMS) and total hospital (inpatient and outpatient) billing costs. RESULTS: Gastrointestinal symptoms were significantly different from baseline (F = 3.03, P < 0.017) with GP patients treated via GES showing more sustained improvement over 36 months than those treated via MED. Healthcare resource usage, measured via the IDIOMS, significantly improved at 12, 24 and 36 month follow-up for GES patients (F = 10.49, P < 0.001), compared with patients receiving medical therapy, who demonstrated further deterioration. GP patients treated via GES also proved superior to medical therapy at 24 and 36 months with regard to decreased costs (F = 4.85, P < 0.001). Within group comparisons indicated significantly reduced hospital days for both patient groups; however, no statistical differences were noted between groups in terms of hospital days. Three of nine patients in the MED group died primarily from i.v. access related problems; none of the GES patients died. CONCLUSION: We conclude that GES is more effective in improving long-term GI symptoms and costs, and decreasing use of healthcare resources than intensive medical therapy, in this sample of patients with the symptoms of GP followed for 3 years. Certain patients with GP form a high-risk group in terms of costs, quality of life, morbidity and mortality.

Adult↗
PubMed1992

Use of formal community resources by spouse caregivers of chronically ill adults.

This descriptive correlational study examined the use of formal community resources of spouse caregivers of progressively chronically ill individuals. The convenience sample was 61 individuals with a definitive diagnosis of multiple sclerosis and their spouse caregivers. Results indicated that 34.4% of the sample used community resources. Relationships among caregiver demographics, extent of caregiving tasks, subjective burden, perceived uncertainty of the caregiver, functional incapacity of the chronically ill individual, level of social support, and the use of formal community resources were analyzed. Positively correlated (P less than 0.05) with the criterion variable of use of formal community resources were the variables of caregiver age (rpb = 0.342), number of caregiving tasks (rpb = 0.424), caregiver employment level (chi 2 = 8.25), and functional incapacity of the care receiver (rpb = 0.565). Results of discriminate function analysis indicated that three variables, functional incapacity, caregiver age, and number of caregiving tasks, correctly classified users versus nonusers of community resources 83.6% of the time.

Adult↗
PubMed2005

Direct costs of glaucoma and severity of the disease: a multinational long term study of resource utilisation in Europe.

BACKGROUND: Resource utilisation and direct costs associated with glaucoma progression in Europe are unknown. As population progressively ages, the economic impact of the disease will increase. METHODS: From a total of 1655 consecutive cases, the records of 194 patients were selected and stratified by disease severity. Record selection was based on diagnoses of primary open angle glaucoma, glaucoma suspect, ocular hypertension, or normal tension glaucoma; 5 years minimum follow up were required. Glaucoma severity was assessed using a six stage glaucoma staging system based on static threshold visual field parameters. Resource utilisation data were abstracted from the charts and unit costs were applied to estimate direct costs to the payer. Resource utilisation and estimated direct cost of treatment, per person year, were calculated. RESULTS: A statistically significant increasing linear trend (p = 0.018) in direct cost as disease severity worsened was demonstrated. The direct cost of treatment increased by an estimated 86 for each incremental step ranging from 455 euro per person year for stage 0 to 969 euro per person year for stage 4 disease. Medication costs ranged from 42% to 56% of total direct cost for all stages of disease. CONCLUSIONS: These results demonstrate for the first time in Europe that resource utilisation and direct medical costs of glaucoma management increase with worsening disease severity. Based on these findings, managing glaucoma and effectively delaying disease progression would be expected to significantly reduce the economic burden of this disease. These data are relevant to general practitioners and healthcare administrators who have a direct influence on the distribution of resources.

Adult↗
PubMed1980

An approach to the analysis of health care needs and resources.

A semi-quantitative method of analysing the relationship between health care resources and need is described. It utilises the Donabedian model which expresses needs and resources in equivalent units in order to estimate the ratio of resources to need. The optimum resource/need ratio is regarded as that pertaining to the reference population; deviation from this optimum ratio in the subunits of the reference population is interpreted as a manifestation of inequitable resource distribution. An example is presented of the application of the method to the Greater Glasgow Health Board and its five constituent districts for the years 1974-77. It is argued that this method might, without undermining the principle of geographical equity, meet some of the objections to the more rigid 'formula' approach in the report of the Resource Allocation Working Party (RAWP) and in the Scottish Health Authorities Revenue Equalisation (SHARE) report.

Health Resources↗
PubMed1997

Ethics and the GMC core curriculum: a survey of resources in UK medical schools.

OBJECTIVES: To study the resources available and resources needed for ethics teaching to medical students in UK medical schools as required by the new GMC core curriculum. DESIGN: A structured questionnaire was piloted and then circulated to deans of medical schools. SETTING: All UK medical schools. RESULTS: Eighteen out of 28 schools completed the questionnaire, the remainder either indicating that their arrangements were "under review" (4) or not responding (6). Among those responding: 1) library resources, including video and information technology were found to be fairly well developed; 2) many schools had a good supply of handouts and sample cases for teaching; 3) most had a written syllabus, and 4) two-thirds examined in the subject. However, many schools indicated that there was an urgent need for: 1) full-time teachers (most ethics teaching is still by part-time and voluntary staff); funding for books and journals, and 3) additional teaching materials (including further case vignettes, handouts and sample exam questions). CONCLUSIONS: There has been a considerable overall improvement in resources for medical ethics teaching since the time of the last national survey (The Pond Report). However, provision varies widely from medical school to medical school. The particular needs identified were for full-time teachers, library resources and teaching materials. Wider use of existing organisations concerned with medical ethics could help to meet these needs.

Curriculum↗
PubMed2001

Treatment pathways, resource use and costs in the management of small cell lung cancer.

BACKGROUND: Small cell lung cancer (SCLC) represents about 20% of primary lung tumours and the costs associated with the management of SCLC can be significant. The main objective of this study was to obtain information on current patterns of care and associated resource use and costs for patients with SCLC from initial diagnosis and treatment phase, throughout disease progression and terminal care. METHODS: A 4 year retrospective patient chart analysis (1994-7) was conducted on a consecutive series of 109 patients diagnosed with SCLC in two Newcastle hospitals. For this consecutive series of patients all details about care received including tests and procedures, treatment, and medication from diagnosis till death were recorded. Pathways of care and forms were designed to enable resource use to be captured for different disease phases. Unit costs were determined from a variety of sources including the Newcastle Hospitals NHS Trust Finance Department and the British National Formulary. RESULTS: The average total cost per patient calculated for the full cohort of 109 patients was pound 11,556. Initial treatment was the most resource use intensive constituting 48.2% of the total cost. The major cost element throughout all disease phases was hospitalisation. Twenty eight percent of the total costs of care occur after recurrence of the disease until death, of which 73% are generated by terminal care. CONCLUSION: The results of this retrospective medical chart analysis show that the costs of care of SCLC are considerable, although the variability between patients in terms of the type and quantity of resource use is very high. Analyses such as this provide a useful insight into resources used in actual clinical practice.

Aged↗
PubMed2003

Factors that explain how policy makers distribute resources to mental health services.

Advocates hope to influence the resource allocation decisions of legislators and other policy makers to capture more resources for mental health programs. Findings from social psychological research suggest factors that, if pursued, may improve advocacy efforts. In particular, allocation decisions are affected by policy makers' perceptions of the scarcity of resources, effectiveness of specific programs, needs of people who have problems that are served by these programs, and extent of personal responsibility for these problems. These perceptions are further influenced by political ideology. Conservatives are motivated by a tendency to punish persons who are perceived as having personal responsibility for their problems by withholding resources, whereas liberals are likely to avoid tough allocation decisions. Moreover, these perceptions are affected by political accountability, that is, whether politicians perceive that their constituents will closely monitor their decisions. Just as the quality of clinical interventions improves when informed by basic research on human behavior, the efforts of mental health advocates will be advanced when they understand the psychological forces that affect policy makers' decisions about resources.

Budgets↗
PubMed1999

Prevalence and predictors of the use of self-care resources.

Health care reform goals are to reduce costs and increase access while maintaining quality of care. A potentially effective avenue for achieving these difficult goals is to activate the untapped potential of consumers in managing their own health care. This study focuses on three Northwest communities and examines the prevalence of the use of self-care resources and the correlates of use. A random sample of households was surveyed using a mail-out questionnaire. The findings indicated that the use of self-care resources was high in the three community populations. Consulting a self-care book was the most commonly used resource, followed by telephone advice nurses. Communities do vary in their level of self-care resource use. Understanding this variability may help communities to expand the use of such resources and lessen the demand for formal health care services. Suggestions for future studies are discussed.

Adolescent↗
PubMed2006

An informatics model for tissue banks--lessons learned from the Cooperative Prostate Cancer Tissue Resource.

BACKGROUND: Advances in molecular biology and growing requirements from biomarker validation studies have generated a need for tissue banks to provide quality-controlled tissue samples with standardized clinical annotation. The NCI Cooperative Prostate Cancer Tissue Resource (CPCTR) is a distributed tissue bank that comprises four academic centers and provides thousands of clinically annotated prostate cancer specimens to researchers. Here we describe the CPCTR information management system architecture, common data element (CDE) development, query interfaces, data curation, and quality control. METHODS: Data managers review the medical records to collect and continuously update information for the 145 clinical, pathological and inventorial CDEs that the Resource maintains for each case. An Access-based data entry tool provides de-identification and a standard communication mechanism between each group and a central CPCTR database. Standardized automated quality control audits have been implemented. Centrally, an Oracle database has web interfaces allowing multiple user-types, including the general public, to mine de-identified information from all of the sites with three levels of specificity and granularity as well as to request tissues through a formal letter of intent. RESULTS: Since July 2003, CPCTR has offered over 6,000 cases (38,000 blocks) of highly characterized prostate cancer biospecimens, including several tissue microarrays (TMA). The Resource developed a website with interfaces for the general public as well as researchers and internal members. These user groups have utilized the web-tools for public query of summary data on the cases that were available, to prepare requests, and to receive tissues. As of December 2005, the Resource received over 130 tissue requests, of which 45 have been reviewed, approved and filled. Additionally, the Resource implemented the TMA Data Exchange Specification in its TMA program and created a computer program for calculating PSA recurrence. CONCLUSION: Building a biorepository infrastructure that meets today's research needs involves time and input of many individuals from diverse disciplines. The CPCTR can provide large volumes of carefully annotated prostate tissue for research initiatives such as Specialized Programs of Research Excellence (SPOREs) and for biomarker validation studies and its experience can help development of collaborative, large scale, virtual tissue banks in other organ systems.

Databases as Topic↗