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1.  WOMEN’S INTENTIONS TO RECEIVE CERVICAL CANCER SCREENING WITH PRIMARY HUMAN PAPILLOMAVIRUS TESTING 
We explored the potential impact of HPV testing on women’s intentions to be screened for cervical cancer in a cohort of Canadian women. Participants aged 25-65 from an ongoing trial were sent a questionnaire to assess women’s intentions to be screened for cervical cancer with HPV testing instead of Pap smears and to be screened every 4 years or after 25 years of age. We created scales for attitudes about HPV testing, perceived behavioural control and direct and indirect subjective norms. Demographic data and scales that were significantly different (p<0.1) between women who intended to be screened with HPV and those who did not intend were included in a stepwise logistic regression model. Of the 2016 invitations emailed, 1538 were received, and 981 completed surveys for a response rate of 63% (981/1538). Eighty-four percent of women (826/981) responded that they intended to attend for HPV-based cervical cancer screening, which decreased to 54.2% when the screening interval was extended, and decreased further to 51.4% when screening start was delayed to age 25. Predictors of intentions to undergo screening were attitudes (OR 1.22; 95%CI 1.15, 1.30), indirect subjective norms (OR 1.02; 95%CI 1.01, 1.03) and perceived behavioural control (OR 1.16; 95% CI 1.10; 1.22). Intentions to be screened for cervical cancer with HPV testing decreased substantially when the screening interval was extended and screening started at age 25. Use of primary HPV testing may optimize the screening paradigm, but programs should ensure robust planning and education to mitigate any negative impact on screening attendance rates.
doi:10.1002/ijc.28324
PMCID: PMC4515309  PMID: 23754203
HPV; cervical cancer screening; intention; Theory of Planned Behavior
2.  High-cost health care users in Ontario, Canada: demographic, socio-economic, and health status characteristics 
Background
Health care spending is overwhelmingly concentrated within a very small proportion of the population, referred to as the high-cost users (HCU). To date, research on HCU has been limited in scope, focusing mostly on those characteristics available through administrative databases, which have been largely clinical in nature, or have relied on ecological measures of socio-demographics. This study links population health surveys to administrative data, allowing for the investigation of a broad range of individual-level characteristics and provides a more thorough characterization of community-dwelling HCU across demographic, social, behavioral and clinical characteristics.
Methods
We linked three cycles of the Canadian Community Health Survey (CCHS) to medical claim data for the years 2003–2008 for Ontario, Canada. Participants were ranked according to gradients of cost (Top 1%, Top 2-5%, Top 6-50% and Bottom 50%) and multinomial logistic regression was used to investigate a wide range of factors, including health behaviors and socio-demographics, likely associated with HCU status.
Results
Using a total sample of 91,223 adults (18 and older), we found that HCU status was strongly associated with being older, having multiple chronic conditions, and reporting poorer self-perceived health. Specifically, in the fully-adjusted model, poor self-rated health (vs. good) was associated with a 26-fold increase in odds of becoming a Top 1% HCU (vs. Bottom 50% user) [95% CI: (18.9, 36.9)]. Further, HCU tended to be of lower socio-economic status, former daily smokers, physically inactive, current non-drinkers, and obese.
Conclusions
The results of this study have provided valuable insights into the broader characteristics of community-dwelling HCU, including unique demographic and behavioral characteristics. Additionally, strong associations with self-reported clinical variables, such as self-rated general and mental health, highlight the importance of the patient perspective for HCU. These findings have the potential to inform policies for health care and public health, particularly in light of increasing decision-maker attention in the sustainability of the health care system, improving patient outcomes and, more generally, in order to achieve the common goal of improving population health outcomes.
doi:10.1186/s12913-014-0532-2
PMCID: PMC4221677  PMID: 25359294
Health care utilization; High-cost users; Upstream determinants; Population perspective; Canadian Community Health Survey
5.  A holiday wish list for Canada’s Early Years System 
Paediatrics & Child Health  2012;17(10):541-543.
The evidence is clear that early childhood interventions and supports have long-term health and social benefits – coordinated action is required to ensure that every Canadian child benefits. While many advances have been made to improve the chances for Canadian children to have a healthy opportunity for early childhood development, there is much to be done to ensure that they have the best opportunities possible. To ensure every child is able to reach their full potential, the following wishes are identified for Canadian children: a fairer share of the GDP for Canadian children; the development of a strong early years system; designation of a national lead on behalf of children and youth; a focus on prevention; and development of systems to monitor success and failure.
PMCID: PMC3549689  PMID: 24294059
Child Development; Health Policy; Prevention
6.  Congenital scoliosis – Quo vadis? 
Indian Journal of Orthopaedics  2010;44(2):137-147.
Congenital spinal vertebral anomalies can present as scoliosis or kyphosis or both. The worldwide prevalence of the vertebral anomalies is 0.5-1 per 1000 live births. Vertebral anomalies can range from hemi vertebrae (HV) which may be single or multiple, vertebral bar with or without HV, block vertebrae, wedge shaped or butterfly vertebrae. Seventy per cent of congenital vertebral anomalies result in progressive deformities. The risk factors for progression include: type of defect, site of defect (junctional regions) and patient's age at the time of diagnosis. The key to success in managing these spinal deformities is early diagnosis and anticipation of progression. One must intervene surgically to halt the progression of deformity and prevent further complications associated with progressive deformity. Planning for surgery includes a preoperative MRI scan to rule out spinal anomalies such as diastematomyelia. The goals of surgical treatment for congenital spinal deformity are to achieve a straight growing spine, a normal standing sagittal profile, and a short fusion segment. The options of surgery include in situ fusion, convex hemi epiphysiodesis and hemi vertebra excision. These basic surgical procedures can be combined with curve correction, instrumentation and short segment fusion. Most surgeons prefer posterior (only) surgery for uncomplicated HV excision and short segment fusion. These surgical procedures can be performed through posterior, anterior or combined approaches. The advocates of combined approaches suggest greater deformity correction possibilities with reduced incidence of pseudoarthrosis and minimize crankshaft phenomenon. We recommend posterior surgery for curves involving only an element of kyphosis or modest deformity, whereas combined anterior and posterior approach is indicated for large or lordotic deformities. In the last decade, the use of growing rods and vertebral expandable prosthetic titanium rib has improved the armamentarium of the spinal surgeon in dealing with certain difficult congenital spinal deformities. The goal of growing rod treatment is to provide simultaneous deformity correction and allow for continued spinal growth. Once maximal spinal growth has been achieved, definitive fusion and instrumentation is performed.
doi:10.4103/0019-5413.61997
PMCID: PMC2856388  PMID: 20419000
Congenital scoliosis; hemivertebrae; scoliosis
7.  Inter-Facility Patient Transfers in Ontario: Do You Know What Your Local Ambulance Is Being Used For? 
Healthcare Policy  2009;4(3):53-66.
Background:
Little is known about inter-facility patient transfers in populations. In 2003, detailed information about inter-facility patient transfers began to be systematically collected in Ontario.
Methodology:
The authors undertook a descriptive examination of inter-facility patient transfers using a newly created population-based information system.
Results:
Approximately 1,000 inter-facility patient transfers occur in Ontario each day, and every day and a half, the total distance travelled for these transfers equals the distance around the earth's circumference. The annual cost for patient transfers is approximately $283 million. Most common were routine and non-urgent inter-facility patient transfers. Eighty-five thousand patients (24.3% of transferred patients) were transported between healthcare facilities for dialysis appointments, appointments with physicians and return trips home. Patients with circulatory conditions were the most commonly transferred diagnostic group. Although 70% of all transfers were within 25 kilometres, some were for longer distances: for example, those involving pregnant women and newborn babies required travelling a median distance of 40.3 kilometres for continued care. Cardiac patients (54,000 patient transfers per year) travelled a median of 24.2 kilometres to reach a catheterization lab for treatment and further investigation. There was considerable lateral movement between academic health sciences centres (AHSCs). Over 16,000 patients per year (4.7% of all transfers) were transferred from one AHSC to another, predominantly for cardiac care.
Discussion:
Patients in Ontario are often transferred between healthcare facilities. Most transfers are for routine, non–life-threatening reasons, using the Emergency Medical Services (EMS) system. This practice diverts resources from more emergent requests. Although patient transportation is a necessary part of any healthcare system, the results of this study highlight the current demands on a system that was not intended for the volume of inter-facility patient transfers it is supporting. These results call into question the use of sophisticated, highly trained, expensive patient transfer resources to provide routine medical services in Ontario.
PMCID: PMC2653709  PMID: 19377355
8.  Validation of the Provincial Transfer Authorization Centre database: a comprehensive database containing records of all inter-facility patient transfers in the province of Ontario 
Background
The Provincial Transfer Authorization Centre (PTAC) was established as a part of the emergency response in Ontario, Canada to the Severe Acute Respiratory Syndrome (SARS) outbreak in 2003. Prior to 2003, data relating to inter-facility patient transfers were not collected in a systematic manner. Then, in an emergency setting, a comprehensive database with a complex data collection process was established. For the first time in Ontario, population-based data for patient movement between healthcare facilities for a population of twelve million are available. The PTAC database stores all patient transfer data in a large database. There are few population-based patient transfer databases and the PTAC database is believed to be the largest example to house this novel dataset. A patient transfer database has also never been validated. This paper presents the validation of the PTAC database.
Methods
A random sample of 100 patient inter-facility transfer records was compared to the corresponding institutional patient records from the sending healthcare facilities. Measures of agreement, including sensitivity, were calculated for the 12 common data variables.
Results
Of the 100 randomly selected patient transfer records, 95 (95%) of the corresponding institutional patient records were located. Data variables in the categories patient demographics, facility identification and timing of transfer and reason and urgency of transfer had strong agreement levels. The 10 most commonly used data variables had accuracy rates that ranged from 85.3% to 100% and error rates ranging from 0 to 12.6%. These same variables had sensitivity values ranging from 0.87 to 1.0.
Conclusion
The very high level of agreement between institutional patient records and the PTAC data for fields compared in this study supports the validity of the PTAC database. For the first time, a population-based patient transfer database has been established. Although it was created during an emergency situation and data collection is dependent on front-line medical workers, the PTAC data has achieved a high level of validity, perhaps even higher than many purpose built databases created during non-emergency settings.
doi:10.1186/1472-6963-6-129
PMCID: PMC1609112  PMID: 17026763
9.  Perspectives on colorectal cancer screening: a focus group study 
Abstract
Objective  To assess attitudes and acceptability of Ontario consumers and doctors towards colorectal screening with faecal occult blood testing (FOBT) and colonoscopy.
Design, setting and participants  Focus groups with gender‐specific samples of the population, high‐risk gastroenterology patients and family doctors.
Method  Semi‐structured interview guides used by facilitator to lead groups through knowledge of risk factors and prevention of colorectal cancer, the screening modalities, requirements for implementing screening programmes, barriers to screening and preferences towards screening.
Main findings  There were low levels of knowledge about colorectal cancer and its prevention in the general population. FOBT was an acceptable screening modality, but considerable education about its use and benefits would be necessary to implement a screening programme. Colonoscopy was not perceived to be a good choice for a primary screen in the general population. The high‐risk group supported use of FOBT in the general population and emphasized the need for education. The doctors were more reluctant about screening, requesting clear guidelines. They also identified the time and resources that would be required if a screening programme were initiated.
Conclusion  While colorectal screening is acceptable in this sample, information and decision aids are required to enable consumers and providers to make effective decisions. Implementation of colorectal screening programmes requires substantial educational efforts for both consumers and doctors.
doi:10.1046/j.1369-6513.2003.00252.x
PMCID: PMC5060210  PMID: 14982499
attitudes; colorectal neoplasms; health education; knowledge; mass screening; practice
10.  Feasibility study of multidisciplinary oncology rounds by videoconference for surgeons in remote locales 
Background
This study was undertaken to assess the feasibility of using videoconferencing to involve community-based surgeons in interactive, multidisciplinary oncology rounds so they may benefit from the type of community of practice that is usually only available in academic cancer centres.
Methods
An existing videoconference service provider with sites across Ontario was chosen and the series was accredited. Indirect needs assessment involved examining responses to a previously conducted survey of provincial surgeons; interviewing three cancer surgeons from different regions of Ontario; and by analyzing an online portfolio of self-directed learning projects. Direct needs assessment involved a survey of surgeons at videoconference-enabled sites. A surgical, medical and radiation oncologist plus a facilitator were scheduled to guide discussion for each session. A patient scenario developed by the discussants was distributed to participants one week prior to each session.
Results
Direct and indirect needs assessment confirmed that breast cancer and colorectal cancer topics were of greatest importance to community surgeons. Six one-hour sessions were offered (two breast, two colorectal, one gynecologic and one lung cancer). A median of 22 physicians and a median of eight sites participated in each session. The majority of respondents were satisfied with the videoconference format, presenters and content. Many noted that discussion prompted reflection on practice and that current practice would change.
Conclusions
This pilot study demonstrated that it is possible to engage remote surgeons in multidisciplinary oncology rounds by videoconference. Continued assessment of videoconferencing is warranted but further research is required to develop frameworks by which to evaluate the benefits of telehealth initiatives.
doi:10.1186/1472-6947-3-7
PMCID: PMC165596  PMID: 12816548
11.  Educating women about breast cancer. An intervention for women with a family history of breast cancer. 
Canadian Family Physician  2003;49:56-63.
OBJECTIVE: To evaluate an "information aid" for women with a family history of breast cancer. DESIGN: Before-after descriptive study. SETTING: Family practices in Ontario. PARTICIPANTS: Of 405 randomly selected Ontario physician members of the College of Family Physician's of Canada's National Research System, 97 agreed to participate and to recruit three consecutive female patients with any family history of breast cancer. INTERVENTIONS: Patients completed a baseline questionnaire and, after reviewing the information aid, a satisfaction questionnaire. Four weeks later, they completed a third questionnaire. MAIN OUTCOME MEASURES: Patient satisfaction, knowledge, worries related to breast cancer, risk perception, and attitudes toward screening. RESULTS: Of 203 patients recruited, 160 (79%) completed all three questionnaires. The information aid was rated excellent or very good by 91% of the women; 99% would recommend it to other women. Knowledge improved significantly; worry about breast cancer did not increase. CONCLUSION: The information aid is a useful resource for women and primary care physicians and could facilitate appropriate risk assessment and management of women with a family history of breast cancer.
PMCID: PMC2214123  PMID: 12602843
12.  Medical informatics in an undergraduate curriculum: a qualitative study 
Background
There is strong support for educating physicians in medical informatics, and the benefits of such education have been clearly identified. Despite this, North American medical schools do not routinely provide education in medical informatics.
Methods
We conducted a qualitative study to identify issues facing the introduction of medical informatics into an undergraduate medical curriculum. Nine key informants at the University of Toronto medical school were interviewed, and their responses were transcribed and analyzed to identify consistent themes.
Results
The field of medical informatics was not clearly understood by participants. There was, however, strong support for medical informatics education, and the benefits of such education were consistently identified. In the curriculum we examined, medical informatics education was delivered informally and inconsistently through mainly optional activities. Issues facing the introduction of medical informatics education included: an unclear understanding of the discipline; faculty and administrative detractors and, the dense nature of the existing undergraduate medical curriculum.
Conclusions
The identified issues may present serious obstacles to the introduction of medical informatics education into an undergraduate medicine curriculum, and we present some possible strategies for addressing these issues.
doi:10.1186/1472-6947-2-6
PMCID: PMC126228  PMID: 12207827
14.  Waiting times from abnormal breast screen to diagnosis in 7 Canadian provinces 
Background
Delay to breast cancer diagnosis following an abnormal screening result is associated with anxiety and personal disruption. We assessed the patterns and timeliness of diagnostic follow-up after breast cancer screening for women with abnormal results who attended organized screening programs in 7 provinces.
Methods
Using data from the Canadian Breast Cancer Screening Database, we identified 203 141 women aged 50–69 years who underwent screening in 1996 through provincially organized breast cancer screening programs in British Columbia, Alberta, Saskatchewan, Manitoba, Ontario, Nova Scotia and Newfoundland. We prospectively followed women with an abnormal screening result through to the completion of the assessment process. We evaluated the waiting times from screening examination to first assessment, from screening examination to first imaging, from screening examination to diagnosis and from first assessment to diagnosis for 13 958 women, stratified according to screening program, mode of detection, whether a biopsy was performed and whether cancer was diagnosed.
Results
We observed considerable variations between and within programs in the time to diagnosis. The median time from screening examination to first assessment was 2.6 weeks. The median time from screening examination to diagnosis was 3.7 weeks; this time increased to 6.9 weeks for women undergoing biopsy. Even when no biopsy was performed, 10% of the women waited 9.6 weeks or longer for a diagnosis, as compared with 15.0 weeks or longer for 10% of the women undergoing biopsy. Among the women who had a biopsy, the use of core biopsy was associated with a shorter median time to diagnosis than was open biopsy, and those found to have cancer had shorter waiting times than women with benign biopsy findings.
Interpretation
Women undergoing assessment of an abnormal breast cancer screening result waited many weeks for a diagnosis, especially when a biopsy was performed. To ensure that targets for timeliness, adopted nationally in 1999, are realized, improved models of care or dissemination of existing efficient techniques to reach a diagnosis will be needed.
PMCID: PMC81326  PMID: 11517642
17.  The health care information directive 
Background
Developments in information technology promise to revolutionise the delivery of health care by providing access to data in a timely and efficient way. Information technology also raises several important concerns about the confidentiality and privacy of health data. New and existing legislation in Europe and North America may make access to patient level data difficult with consequent impact on research and health surveillance. Although research is being conducted on technical solutions to protect the privacy of personal health information, there is very little research on ways to improve individuals power over their health information. This paper proposes a health care information directive, analogous to an advance directive, to facilitate choices regarding health information disclosure.
Results and Discussion
A health care information directive is described which creates a decision matrix that combines the ethical appropriateness of the use of personal health information with the sensitivity of the data. It creates a range of possibilities with in which individuals can choose to contribute health information with or without consent, or not to contribute information at all.
Conclusion
The health care information directive may increase individuals understanding of the uses of health information and increase their willingness to contribute certain kinds of health information. Further refinement and evaluation of the directive is required.
doi:10.1186/1472-6947-1-1
PMCID: PMC32178  PMID: 11331535
19.  Breast cancer survival by teaching status of the initial treating hospital 
Background
A number of studies have documented variation in treatment patterns by treatment setting or by region. In order to better understand how treatment setting might affect survival, we compared the survival outcomes of women with node-negative breast cancer who were initially treated at teaching hospitals with those of women initially treated at community hospitals.
Methods
We constructed a retrospective cohort consisting of a random sample of 938 cases, initially diagnosed in 1991, drawn from the Ontario Cancer Registry. Exposure was defined by the type of hospital in which the initial breast cancer surgery was performed. Outcomes were ascertained through follow-up of vital statistics.
Results
The crude 5-year survival rate was 88.7% for women who had their initial surgery in a community hospital and 92.5% for women who had their initial surgery in a teaching hospital. Women in higher income neighbourhoods experienced better survival at 5 years regardless of which type of hospital they were treated in. Multivariate proportional hazards regression modelling demonstrated a 53% relative reduction in risk of death among women with tumours less than or equal to 20 mm in diameter who were treated at a teaching hospital (relative risk [RR] = 0.47, 95% confidence interval [CI] 0.23–0.96), whereas among those with larger tumours there was no demonstrated difference in survival (RR = 1.32, 95% CI 0.73–2.32). Other variables that were significant in the model were age at diagnosis, estrogen receptor status and the use of radiation therapy.
Interpretation
Women with node-negative breast cancer and tumours less than or equal to 20 mm in diameter who were initially seen at a teaching hospital had significantly better survival than women with similar tumours who were initially seen at a community hospital. Survival among women with larger tumours was not statistically significantly different for the 2 types of hospital.
PMCID: PMC80677  PMID: 11332310
20.  Pilot study of an information aid for women with a family history of breast cancer 
Objective
To develop and pilot study an information aid for women with a family history of breast cancer.
Design, setting and participants
The information aid, consisting of a booklet and audiotape, was developed by a multi‐disciplinary team of health care professionals, breast cancer survivors and their relatives. Women with no personal history of breast cancer, on the waiting list for a familial breast cancer clinic at either of two centres, who could read English, were eligible for the pilot study which consisted of three sets of mailed questionnaires.
Main outcome measures
The baseline questionnaires included: demographic information: the Breast Cancer and Heredity Knowledge Scale (BCHK); psychological measures (the State‐Trait Anxiety Inventory [STAI], Centre for Epidemiologic Studies Depression Scale [CES‐D] and an item about breast cancer worry), and an item about breast cancer risk perception. Immediately after reviewing the information aid, participants completed a satisfaction survey, the risk perception and cancer worry items and a checklist about their personal family history. The third set of questionnaires, completed 2–4 weeks after reviewing the aid, was identical to the first. Patients then attended their scheduled clinic visit and an objective hereditary breast cancer risk assessment was made by the genetic counselling team.
Results and conclusions
Of 97 eligible women who were contacted, 67 completed all three sets of questionnaires. Overall, women were very satisfied with the aid and 96% would recommend it to other women. There was a highly significant improvement in their knowledge scores after they reviewed the aid. Anxiety and depression did not change and there was a decline in breast cancer worry. Risk perception did not change significantly. Ninety per cent of women completed their personal family history checklist accurately. Several important improvements have been made in the information aid and it will now be evaluated in the community.
doi:10.1046/j.1369-6513.1999.00038.x
PMCID: PMC5061447  PMID: 11281885
audiotape; booklet; family history; hereditary breast cancer; information aid; risk assessment
21.  Development of a patient decision aid for choice of surgical treatment for breast cancer 
Purpose A patient decision aid for the surgical treatment of early stage breast cancer was developed and evaluated. The rationale for its development was the knowledge that breast conserving therapy (lumpectomy followed by breast radiation) and mastectomy produce equivalent outcomes, and the current general agreement that the decision for the type of surgery should rest with the patient.
Methods A decision aid was developed and evaluated in sequential pilot studies of 18 and 10 women with newly diagnosed breast cancer who were facing a decision for breast conserving therapy or mastectomy. Both qualitative (general reaction, self‐reported anxiety, clarity, satisfaction) and quantitative (knowledge and decisional conflict) measures were assessed.
Results The decision aid consists of an audiotape and workbook and takes 36 min to complete. Based on qualitative comments and satisfaction ratings, 17 of 18 women reported a positive reaction to the decision aid, and all 18 reported that it helped clarify information given by the surgeon. Women did not report an increase in anxiety and 17 of 18 women were either satisfied or very satisfied with the decision aid.
Conclusion This pilot study supports the hypothesis that this decision aid may be a helpful adjunct in the decision for surgical management of early stage breast cancer. We are currently conducting a randomized trial of the decision aid versus a simple educational pamphlet to evaluate its efficacy as measured by knowledge, decisional conflict, anxiety and post‐decisional regret.
doi:10.1046/j.1369-6513.1998.00003.x
PMCID: PMC5081065  PMID: 11281859
breast cancer surgery; decision aid

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