Recruiting and motivating black subjects to complete a lengthy survey in a large cohort study: an exploration of different strategies.

BACKGROUND: The effectiveness of multiple innovative recruitment strategies for enrolling Black/African American participants to the Adventist Health Study-2 (AHS-2) is described. The study's focus is diet and breast, prostate and colon cancer. METHODS: Promotions centered on trust, relationship building and incentives for increasing enrollment and questionnaire return rate. Of the sub-studies described, one had a randomized control group, and the others, informal controls. The subjects are from all states of the U.S. and some provinces of Canada. The offer of a Black art piece, follow-up calls, a competitive tournament as well as other strategies accounted for nearly 3,000 additional returns even though they were often used in small subsets. RESULTS: Flexibility and multiple strategies proved advantageous in gaining the cooperation of Blacks, who are usually reluctant to participate in research studies. CONCLUSIONS: Lessons learned during initial enrollment should help us retain our final Black cohort of 26,000, and obtain new information when required.

Recruiting black Americans in a large cohort study: the Adventist Health Study-2 (AHS-2) design, methods and participant characteristics.

OBJECTIVE: The goal of the prospective Adventist Health Study-2 (AHS-2) was to examine the relationship between diet and risk of breast, prostate and colon cancers in Black and White participants. This paper describes the study design, recruitment methods, response rates, and characteristics of Blacks in the AHS-2, thus providing insights about effective strategies to recruit Blacks to participate in research studies. DESIGN: We designed a church-based recruitment model and trained local recruiters who used various strategies to recruit participants in their churches. Participants completed a 50-page self-administered dietary and lifestyle questionnaire. PARTICIPANTS: Participants are Black Seventh-day Adventists, aged 30-109 years, and members of 1,209 Black churches throughout the United States and Canada. RESULTS: Approximately 48,328 Blacks from an estimated target group of over 90,000 signed up for the study and 25,087 completed the questionnaire, comprising about 26% of the larger 97,000 AHS-2-member cohort. Participants were diverse in age, geographic location, education, and income. Seventy percent were female with a median age of 59 years. CONCLUSION: In spite of many recruitment challenges and barriers, we successfully recruited a large cohort whose data should provide some answers as to why Blacks have poorer health outcomes than several other ethnic groups, and help explain existing health disparities.

Lung cancer: an exploration of patient and general practitioner perspectives on the realities of care in rural Western Australia.

OBJECTIVE: This study investigates if the pattern of diagnostic testing for suspected lung cancer, stage at diagnosis, patterns of specialist referral and treatment options offered to people in rural Western Australia are similar to those in the metropolitan area. It then explores the barriers to quality care in rural areas as perceived by GPs and patients. METHODS: There was a review of GP records to obtain clinical and referral information and an in-depth interview with patients and GPs concerning their perspectives of the quality of care. RESULTS/DISCUSSION: We selected age and sex-matched samples of 22 rural and 21 metropolitan patients. Rural patients had more symptoms and took longer to consult their GPs, leading to later diagnosis and fewer treatment options. They experienced longer waits for specialist consultation and underwent less diagnostic testing. The GPs always referred lung cancer patients to a specialist, usually a respiratory physician. Teaching hospitals were preferred because of their comprehensive facilities and multidisciplinary teams. Rural GPs reported distance, time and availability of appointments as barriers; they also raised concerns about late confirmation of diagnosis. Rural and metropolitan patients were equally satisfied with their quality of care, but rural patients desired more information and better communication between hospital and GPs. Facilities for rural patients at some metropolitan hospitals were criticised. In conclusion, rural patients received a different care pattern from metropolitan patients and they and their GPs raised concerns about the equity and quality of lung cancer care.

Subsequent surgery after initial breast conserving surgery: a population based study.

BACKGROUND: In line with current Australian early breast cancer management guidelines, more women are having breast conserving surgery to treat breast cancer when appropriate. Some women will undergo further surgery because of involved margins, early local relapse, or other factors including patient choice. The aim of this study was to investigate whether socio-economic, demographic or hospital factors were associated with the risk of re-excision or subsequent mastectomy. METHODS: A record linkage population-based study on 12 711 women diagnosed with breast cancer in Western Australia from 1982 to 2000 who underwent breast surgery within 12 months of diagnosis was performed. Logistic regression was used to identify social, demographic and hospital factors associated with the risk of undergoing further surgery following initial breast conserving surgery. RESULTS: The proportion of women undergoing initial breast conserving surgery doubled from 33% in 1982-1985 to 72% in 1998-2000. The proportion of women who underwent further surgery following initial breast conserving surgery decreased from 50 to 30% over the same period. The risk of re-excision or subsequent mastectomy was between 2.4 (95% CI 1.7-3.4) and 5.0 (95% CI 3.4-7.4) times greater if initial surgery was performed in a non-metropolitan hospital compared to Perth hospitals. Younger women were between 1.7 (95% CI 1.4-2.0) and 2.1 (95% CI 1.5-3.0) times more likely to undergo re-excisions compared to women aged 50-64 years of age. CONCLUSIONS: Young women and women initially treated in non-metropolitan hospitals were at an increased risk of re-excision or a subsequent mastectomy following initial breast conserving surgery to treat breast cancer. Efforts need to be directed towards improving specialist health services outside of Perth if women continue to be treated for breast cancer in non-metropolitan hospitals.

Inequalities in rural health care: differences in surgical intervention between metropolitan and rural Western Australia.

BACKGROUND: To compare surgical procedure rates between metropolitan and rural/remote residents in Western Australia (WA). METHODS: The WA Data Linkage System was used to identify all patients who underwent a procedure for cataract, ureteric calculi or urinary outflow obstruction symptoms for the time periods 1981-2000, 1981-1997 and 1981-1995, respectively. Age-standardized procedure rates were calculated and Poisson regression modelling was used to estimate effects of locality of residence and demographic covariates. RESULTS: Overall, rural/remote patients underwent first-time procedures for cataract (IRR 0.92; 95% CI 0.90-0.94), ureteric calculi (0.76; 0.72-0.80), or urinary outflow obstruction (0.71; 0.69-0.74) less frequently than patients in the metropolitan area. They were also significantly less likely to undergo multiple procedures for cataracts (0.90; 0.88-0.91) and ureteric calculi (0.69; 0.67-0.73). CONCLUSION: A distinctly reduced level of surgical intervention was found in rural patients for three generally non-life threatening conditions. The reasons for this require further investigation.

Colorectal cancer surgical care and survival: do private health insurance, socioeconomic and locational status make a difference?

BACKGROUND: The purpose of the present paper was to examine patterns of surgical care and the likelihood of death within 5 years after a diagnosis of colorectal cancer, including the effects of demographic, locational and socioeconomic disadvantage and the possession of private health insurance. METHODS: The Western Australian Data Linkage System was used to extract all hospital morbidity, cancer and death records for people with a diagnosis of colorectal cancer from 1982 to 2001. Demographic, hospital and private health insurance information was available for all years and measures of socioeconomic and locational disadvantage from 1991. A logistic regression model estimated the probability of receiving colorectal surgery. A Cox regression model estimated the likelihood of death from any cause within 5 years of diagnosis. RESULTS: People were more likely to undergo colorectal surgery if they were younger, had less comorbidity and were married/defacto or divorced. People with a first admission to a private hospital (odds ratio (OR) 1.31, 95% confidence interval (CI): 1.16-1.48) or with private health insurance (OR 1.27, 95% CI: 1.14-1.42) were more likely to undergo surgery. Living in a rural or remote area made little difference, but a first admission to a rural hospital reduced the likelihood of surgery (OR 0.76, 95% CI: 0.66-0.87). Residency in lower socioeconomic areas also made no difference to the likelihood of having surgical treatment. The likelihood of death from any cause was lower in those who were younger, had less comorbidity, were elective admissions and underwent surgery. Residency in lower socioeconomic status and rural areas, admission to a rural hospital or a private hospital and possession of private health insurance had no effect on the likelihood of death. CONCLUSIONS: The present study demonstrates that socioeconomic and locational status and access to private health care had no significant effects on surgical patterns of care in people with colorectal cancer. However, despite the higher rates of surgery in the private hospitals and among those with private health insurance, their survival was no better.

A prospective study of the costs of falls in older adults living in the community.

OBJECTIVE: To establish the hospital cost and three-month, post-hospital community and personal costs associated with older adults discharged to the community after a fall. The timing, incidence and the determinants of these costs to the various sectors were also examined. METHODS: Patients who attended the Emergency. Department of a teaching hospital in Perth, Western Australia, were asked to complete a daily diary for three months of all community and informal care they received due to their fall and any associated expenses. Unit costs were collected from various sources and used to estimate the cost of community and informal care. Hospital inpatient costs were estimated using a patient-based costing system. RESULTS: Seventy-nine patients participated with a total estimated falls-related cost for the three-month period of $316,155 to $333,648 (depending on assumptions used) and a mean cost per patient of between $4,291 and $4,642. The hospital cost accounted for 80%, community costs 16% and personal costs 4% of the total. Of community and personal costs, 60% was spent in the first month. Type of injury was the most significant determinant of hospital and community costs. Extrapolating these figures to the WA population provided an estimate of the total hospital and three-month, post-hospital cost of falls of $24.12 million per year, with $12.1 million funded by the Federal Government, $10.1 million by State/local government and $1.7 million in out-of pocket expenses by patients. CONCLUSION: In the acute and immediate post-discharge period, hospital costs accounted for most of the cost of care for older adults discharged to the community after a fall. Community and personal costs, however, were also incurred. The cost estimates provide useful information for planners of hospital and community care for older people who have sustained a fall.

The influence of socio-economic and locational disadvantage on survival after a diagnosis of lung or breast cancer in Western Australia.

OBJECTIVE: The effects of demographic, locational and socio-economic disadvantage, and the influence of private health care on five-year mortality rates in patients with lung cancer or after breast cancer surgery in Western Australia were examined. METHODS: The Western Australian Record Linkage Project was used to extract all hospital morbidity, cancer and death records of all people with lung or breast cancer in Western Australia from 1982 to 1996. Mortality rate ratios after a diagnosis of lung cancer or breast cancer surgery were estimated using Cox regression. Two sets of analyses were carried out: demographically adjusted from 1982 to 1996; and demographically and disadvantage adjusted from 1992 to 1996. RESULTS: Overall, 87.7% of lung cancer and 17.8% of breast cancer patients were deceased by five years. Lung and breast cancer patients treated in rural hospitals had higher mortality rates (1992-1996: relative risk (RR) 1.24, 95% confidence interval (CI) 1.07-1.44, and RR 1.20, 95% CI 0.92-1.56, respectively; 1982-1996: RR 1.20, 95% CI 1.11-1.30, and RR 1.19, 95% CI 1.06-1.33, respectively), whereas location of residence had little effect. Lung and breast cancer patients treated in private hospitals had lower mortality (1992-1996: RR 0.85, 95% CI 0.76-0.95, and RR 0.90, 95% CI 0.77-1.05, respectively; 1982-1996: RR 0.91, 95% CI 0.84-0.97, and RR 0.92, 95% CI 0.85-0.99, respectively), although insurance status was not a factor. Women with breast cancer had significantly worse survival in the more socio-economically disadvantaged groups (1992-1996: RR 1.41 to 1.26; 1982-1996: RR 1.45 to 1.29). CONCLUSIONS: Survival was poorer in patients treated in the public hospital system, but the possession of private health insurance was not predictive of better outcomes. People treated in rural hospitals had worse survival, whereas location of residence was not an independent factor. Women in more socio-economically advantaged groups who underwent breast cancer surgery had improved survival.

Unequal access to breast-conserving surgery in Western Australia 1982-2000.

BACKGROUND: The purpose of the present study was to examine the effects of demographic, locational and social disadvantage and the possession of private health insurance in Western Australia on the likelihood of women with breast cancer receiving breast-conserving surgery rather than mastectomy. METHODS: The WA Record Linkage Project was used to extract all hospital morbidity, cancer and death records of women with breast cancer in Western Australia from 1982 to 2000 inclusive. Comparisons between those receiving breast-conserving surgery and mastectomy were made after adjustment for covariates in logistic regression. RESULTS: Younger women, especially those aged less than 60 years, and those with less comorbidity were more likely to receive breast-conserving surgery (BCS). In lower socio-economic groups, women were less likely to receive BCS (OR 0.73; 95% CI 0.60-0.90). Women resident in rural areas tended to receive less BCS than those from metropolitan areas (OR 0.84; 95% CI 0.55-1.29). Women treated in a rural hospital had a reduced likelihood of BCS (OR 0.74; 95% CI 0.61-0.89). Treatment in a private hospital reduced the likelihood of BCS (OR 0.70; 95% CI 0.54-0.90), while women with private health insurance were much more likely to receive BCS (OR 1.39; 95% CI 1.08-1.79). CONCLUSION: Several factors were found to affect the likelihood of women with breast cancer receiving breast-conserving surgery, in particular, women from disadvantaged backgrounds were significantly less likely to receive breast-conserving surgery than those from more privileged groups.

The influence of socio-economic and locational disadvantage on patterns of surgical care for lung cancer in Western Australia 1982-2001.

OBJECTIVE: Patterns of in-hospital surgical care for lung cancer in Western Australia were examined, including the effects of demographic, locational and socio-economic disadvantage and the possession of private health insurance, on the likelihood of receiving surgery. PATIENTS AND METHODS: The WA Record Linkage Project was used to extract hospital morbidity, cancer and death records of all people with lung cancer in Western Australia from 1982 to 2001. The likelihood of receiving lung cancer surgery was estimated, after adjustment for co-variates, using logistic regression. RESULTS: Overall, 16% of patients received surgery for their lung cancer, although this varied according to histology. Patients who received surgery were typically younger, female, non-indigenous and had less comorbidity. Patients from socio-economically disadvantaged groups tended to be less likely to receive surgery (OR 0.79; 95% CI 0.61-1.04) although this was not significant for each category of disadvantage. Those who had their first hospital admission, with a mention of lung cancer, in a rural hospital were less likely to receive surgery (OR 0.26; 95% CI 0.19-0.36) than those in metropolitan hospitals, although residential location generally had less effect (OR 0.36; 95% CI 0.14-0.92). Patients admitted as a private patient either to a private or public hospital for their first mention of lung cancer had increased likelihood of receiving surgery (OR 1.15; 95% CI 1.02-1.30); however first admission to a private hospital had no effect (OR 0.99: 95% CI 0.85-1.16). CONCLUSION: The utilisation of lung cancer surgery was low with several factors found to affect the rate. Patients from socio-economically or locationally disadvantaged backgrounds, indigenous patients or patients without private health insurance were less likely to receive lung cancer surgery than those from more advantaged groups.

Health system costs of falls of older adults in Western Australia.

The aim of this study was to determine the health system costs associated with falls in older adults who had attended an emergency department (ED) in Western Australia. The data relating to the ED presentations and hospital admissions were obtained from population-based hospital administrative records for 2001-2002. The type of other health services (eg, outpatient, medical, community, ancillary and residential care), the quantity, and their cost were estimated from the literature. In adults aged 65 years and above, there were 18 706 ED presentations and 6222 hospital admissions for fall-related injuries. The estimated cost of falls to the health system was $86.4 million, with more than half of this attributable to hospital inpatient treatment. Assuming the current rate of falls remains constant for each age group and gender, the projected health system costs of falls in older adults will increase to $181 million in 2021 (expressed in 2001-02 Australian dollars). The economic burden to the health services imposed by falls in older adults is substantial, and a long-term strategic approach to falls prevention needs to be adopted. Policy in this area should be targeted at both reducing the current rate of falls through preventing injury in people from high-risk groups and reducing the future rate of falls through reducing population risk.

Effects of extensive practice on bradykinesia in Parkinson's disease: improvement, retention and transfer.

We investigated the effects of extensive practice of rapid aiming on bradykinesia and, more specifically, generation of peak velocity, in discrete rapid aiming and in transfer to reach-to-grasp. Twenty-one participants (seven young adults, seven older adults, and seven adults with mild to moderate Parkinson's disease (PD) while on medication) engaged in eight practice periods per week for three weeks (> 700 trials), with changes in performance measured weekly. Retention was measured weekly for three weeks postpractice. Movement time decreased with one week of practice, primarily due to a decrease in time-to-peak velocity. With practice and after retention, the PD group generated peak velocity as consistently as both neurologically healthy groups, but remained more variable in time-to-peak velocity. Transfer was observed in the neurologically healthy groups, but not in the PD group. We concluded that short-term practice (one week in our paradigm) is sufficient for decreasing movement time, but more extensive practice is needed to improve consistency of rapid aiming performance for people with mild to moderate PD.

The association between behavior and genotype in Rett syndrome using the Australian Rett Syndrome Database.

This study compared the behavior profile of cases in the Australian Rett Syndrome Database (ARSD) with those in a British study using the Rett Syndrome Behavior Questionnaire (RSBQ) and then examined behavioral patterns as measured by the RSBQ by genetic status. There were 145 Australian cases meeting the criteria for the first arm of the study and 135 for the second arm. Comparison of the scores obtained from the British and Australian cohorts indicated that the RSBQ was a satisfactory measure for describing behaviors in Rett Syndrome (RS). Overall, there were some differences among the behavior patterns of cases with the well-known common mutations. Fear/anxiety was more commonly reported in those with R133C and R306C. Those with the R294X mutation were more likely to have mood difficulties and body rocking but less likely to have hand behaviors and to display repetitive face movements. In contrast, hand behaviors were more commonly reported in those with R270X or R255X. We found the RSBQ is an appropriate instrument for measuring behavior in girls with RS. Some behaviors differ according to genetic mutation but there is both inter and intra mutation variation in behavior and there is a need for larger studies involving international collaboration to improve statistical power.

Improving the evidence base for promoting quality and equity of surgical care using population-based linkage of administrative health records.

This paper highlights the uses of population-based linkage of administrative health records to improve the quality, safety, and equity of surgical care. The primary focus of the paper is on the transfer of this type of research into policy and practice. In the modern era of evidence-based medicine, it is essential that not only is new evidence incorporated into clinical practice, but that the implementation and associated costs are monitored; this requires the setting of appropriate benchmarking criteria. Furthermore, it is imperative that all members of the population receive optimal health care and people are not discriminated against because of socio-economic, locational, or racial factors. The use of data linkage can assist with examining these aspects of health care and this paper provides real-life examples such as costs and adverse events from laparoscopic cholecystectomy, event monitoring for post-operative venous thrombosis, and inequalities in cancer care. The influence of these studies on clinical practice and policy is also discussed. Furthermore, this paper discusses the strengths and weaknesses of data linkage research and how to avoid pitfalls. Health researchers, clinicians, and policy-makers will find the discussion of these issues useful in their everyday practice.

Prostate cancer: socio-economic, geographical and private-health insurance effects on care and survival.

OBJECTIVE: To examine the effects of demographic, geographical and socio-economic factors, and the influence of private health insurance, on patterns of prostate cancer care and 3-year survival in Western Australia (WA). PATIENTS AND METHODS: The WA Record Linkage Project was used to extract all hospital morbidity, cancer and death records of men diagnosed with prostate cancer between 1982 and 2001. The likelihood of having a radical prostatectomy (RP) was estimated using logistic regression, and the likelihood of death 3 years after diagnosis was estimated using Cox regression. RESULTS: The proportion of men undergoing RP increased six-fold, from 3.1% to 20.1%, over the 20 years, whilst non-radical surgery (transurethral, open or closed prostatectomy) simultaneously halved to 29%. Men who had RP were typically younger, married and with less comorbidity. Patients with a first admission to a rural hospital were much less likely to have RP (odds ratio 0.15; 95% confidence interval, CI, 0.11-0.21), whereas residence alone in a rural area had less effect (0.54, 0.29-1.03). A first admission to a private hospital increased the likelihood of having RP (2.40, 2.11-2.72), as did having private health insurance (1.77, 1.56-2.00); being more socio-economically disadvantaged reduced RP (0.63, 0.47-0.83). The 3-year mortality rate was greater with a first admission to a rural hospital (relative risk 1.22; 95% CI 1.09-1.36) and in more socio-economically disadvantaged groups (1.34, 1.10-1.64), whereas those admitted to a private hospital (0.77, 0.71-0.84) or with private health insurance (0.82, 0.76-0.89) fared better. Men who had RP had better survival than those who had non-radical surgery (4.85, 3.52-6.68) or no surgery (6.42, 4.65-8.84), although this may be an artefact of a screening effect. CONCLUSION: The 3-year survival was poorer and the use of RP less frequent in men from socio-economically and geographically disadvantaged backgrounds, particularly those admitted to rural or public hospitals, and those with no private health insurance.

The determinants of reproductive health service provision by general practitioners in Pakistan.

OBJECTIVE: The aim of this cross-sectional study was to identify the factors that influence the provision of reproductive health services by General Practitioners (GPs) working in the province of Sind, Pakistan. METHODS AND PARTICIPANTS: One hundred and ninety-eight GPs were selected as the study participants by a multistage, randomized stratified, proportionate sampling procedure. Data were collected using a self-completed questionnaire, which was validated for content validity by an expert review panel and for face validity by a pilot test administered to doctors from developing countries. Data collection took place between November 2000 and February 2001. RESULTS: Eighty-six percent of GPs (171/198) responded to the questionnaire. Of those, only 25% reported providing reproductive health services in their clinics. The major determinants of reproductive health service provision were found to be the urban location of the GP clinic, being a female GP, postgraduate training in reproductive health and a good knowledge of reproductive health. CONCLUSIONS: The findings of this study suggest that the provision of reproductive health services in Sind could be improved by increasing the involvement of female GPs. This can be achieved by encouraging more female GPs into the specialty, with the use of incentives if necessary, and providing adequate postgraduate training to improve their reproductive health knowledge and skills. The results of this study have broadened understanding of the factors that influence GPs in their provision of reproductive health services, and will contribute significantly to research on reproductive health in Pakistan.

Treatment patterns for cancer in Western Australia: does being Indigenous make a difference?

OBJECTIVE: To examine whether hospital patients with cancer who were identified as Indigenous were as likely to receive surgery for the cancer as non-Indigenous patients. DESIGN, SETTING AND PATIENTS: Epidemiological survey of all Western Australian (WA) patients who had a cancer registration in the state-based WA Record Linkage Project that mentioned cancer of the breast (1982-2000) or cancer of the lung or prostate (1982-2001). MAIN OUTCOME MEASURES: The likelihoods of receiving breast-conserving surgery or mastectomy for breast cancer, lung surgery for lung cancer, or radical or non-radical prostatectomy for prostate cancer were compared between the Indigenous and non-Indigenous populations using adjusted logistic regression analyses. RESULTS: Indigenous people were less likely to receive surgery for their lung cancer (odds ratio [OR], 0.64; 95% CI, 0.41-0.98). Indigenous men were as likely as non-Indigenous men to receive non-radical prostatectomy (OR, 0.69; 95% CI, 0.40-1.17); only one Indigenous man out of 64 received radical prostatectomy. Indigenous women were as likely as non-Indigenous women to undergo breast-conserving surgery (OR, 0.86; 95% CI, 0.60-1.21). CONCLUSIONS: These results indicate a different pattern of surgical care for Indigenous patients in relation to lung and prostate, but not breast, cancer. Reasons for these disparities, such as treatment choice and barriers to care, require further investigation.