Family planning health services research

Unplanned pregnancy is a problem in BC, especially among vulnerable populations who face stark economic, education-related, and work consequences. Women in BC spend almost 30 years trying to avoid pregnancy, compared with an average of less than three years spent pregnant or trying to conceive. Current surveys indicate that few women use highly effective contraception methods. Half of all pregnancies are unplanned and almost a third of BC women have an abortion. BC has Canada’s second highest abortion rate, and without the recent rate declines seen nationally. Moreover, vulnerable populations are overrepresented among those with unplanned pregnancies and especially among those seeking abortion.

Dr. Wendy Norman’s research program will develop evidence to support improvements to family planning access, quality of care, and health policy. This research will involve innovation end-users (health professionals, health system leaders, and an advisory board of citizens) in problem identification, prioritization, and research design leading to facilitated uptake of solutions. Norman’s research utilizes content expertise, collaborations, and trust established over decades as a respected and effective physician leader in this field. This program builds on more than $1.3 million dollars of project-based funding already in place and infrastructure support from research institutes, hospitals, and the University of British Columbia. Research partnerships have been established with all relevant health service organizations and health decision leaders in BC and are now forming with those across Canada.

This innovative program of research and capacity-building will transform health service delivery of family planning in BC and throughout Canada. Women, especially among vulnerable populations, will experience improved access to high quality family planning via. equity-enhancing strategies within BC’s evolving health-care system.

Health economic evaluation to inform strategies for HIV treatment and prevention

HIV treatment has advanced remarkably since 1996, with the advent of highly active antiretroviral therapy (HAART). HAART stops HIV replication and, as a result, the virus is reduced to undetectable levels. This allows immune reconstitution to take place, leading to long-term disease remission and prolonged survival.

The BC Centre for Excellence in HIV/AIDS (BC-CfE) has demonstrated that HAART renders HIV undetectable in sexual fluids and can dramatically reduce HIV transmission. As a result, the BC-CfE is engaged in a number of HIV “treatment as prevention” initiatives aimed at expanding HIV testing and treatment within BC and internationally to decrease HIV-related morbidity and mortality, as well as HIV transmission.

Dr. Bohdan Nosyk’s research is focused on cost-effectiveness analysis of treatment as prevention strategies to inform the most effective allocation of scarce health resources. The initial objective of this proposal is to construct a mathematical cohort simulation model to determine the cost-effectiveness of HAART scale-up in terms of the total costs accumulated, quality adjusted life years, and HIV incidence in BC from 1996 to 2010. A series of statistical and econometric analyses are required to estimate the relevant clinical and economic parameters needed to populate the simulation model. These analyses will be facilitated by the availability of linked administrative datasets and prospectively collected longitudinal data of HAART utilization, duration, and health outcomes at the population level in BC. The analyses will be stratified by HIV acquisition risk factor. This model will be used to predict the potential impact and cost-effectiveness of future policy changes in BC and internationally.

Health Service Needs of Adolescent and Young Adult Survivors of Childhood Cancer

Although cure rates for childhood cancer now exceed 80 percent, many childhood cancer survivors will experience long-term effects of both their cancer and its therapies. These long-term effects may be medical, emotional or psychosocial and can include second cancers, neurocognitive deficits, reproductive challenges and mental illness. For these reasons, follow-up health care for young cancer survivors is recommended and should include screening for second cancers, surveillance and management of physical and psychosocial late effects of cancer and treatment, and promotion of psychosocial adjustment.

Despite these recommendations, the majority of adolescent and young adult cancer survivors are lost in transition from pediatric to adult follow-up care; at the age of 19 years, cancer survivors in BC are no longer cared for in the children's system and are advised to obtain follow-up care from a family physician who manages adults. Yet, some adolescents and young adults do not have a family physician, and still others are unaware of their heightened risk for second cancers and late effects stemming from cancer treatments. Moreover, the delivery of health services varies widely across urban, rural and remote areas of British Columbia, undoubtedly resulting in differences in medical and psychosocial needs.

Dr. Fuchsia Howard's work will determine the medical and psychosocial needs of cancer survivors in their adolescent and young adult years. First, she will determine the specific medical and psychosocial issues faced by these survivors and what their experiences are in managing and obtaining assistance with these issues. The second objective of this study is to determine health care professionals' experiences and challenges in providing medical and psychosocial services to these cancer survivors. The third objective will be to engage cancer survivors and health care professionals in the exchange and translation of knowledge to lead to health service recommendations and interventions tailored to benefit this high-risk population. Young adulthood, in particular, is a stage of development involving many life-related changes, including decisions about education, employment, relationships and family that can be severely affected by the late effects of cancer.

Ultimately, this work will contribute to a comprehensive program of research focused on understanding and addressing the unique needs of high-risk patients throughout the cancer trajectory, from prevention to survivorship. Addressing medical and psychosocial challenges in the transition from adolescence to young and middle adulthood is key to bolstering the formative years that promote, or limit, lifetime potential.

Outcome-based Performance Metrics in Canadian Health Care: Moving from “How Many” to “How Well”

Performance in the health sector has conventionally been viewed in terms of volumes, such as the number of additional surgeries that were performed in a given year. Unfortunately, health status and outcomes are not routinely assessed in Canada. This is a substantive concern — imagine the case where your car manufacturer's performance metric did not include car safety and performance but merely focused on production volume. Health status is a more appropriate outcome than volume for assessing system performance, and understanding variation in performance of the health system provides the opportunity to improve patients’ health-related quality of life. This study aims to develop a system to assess the performance of the health care system by measuring what it produces in terms of "health," such as health-related quality of life rather than only measuring the "production of health care" — for example, surgical volumes.

Dr. Jennifer Davis' research will address the use and analysis of “performance metrics” within health care, with a particular focus on patient-centred and outcome-based measures using Patient Reported Outcome Measures (PROMs). PROMs are detailed surveys that allow patients to report important changes as a result of a medical intervention and allow the assessment of health-related quality of life. Thus, instead of just measuring that a surgery took place, PROMs measure the patient’s perception of how the surgery has improved their life.

Dr. Davis will be applying knowledge from fields outside the health care sector, such as engineering and education, to improve performance assessment within the health care sector. By determining how specific measures improve performance outcomes in other fields, and by identifying which of these are most effective, she will then specifically determine the potential to adapt these measures as PROMS within the health care context to enhance the health of Canadians. This critical platform will enable the first performance assessments using a patient-centred and outcome-based approach in Canada.

Adherence to Immunomodulators in Multiple Sclerosis: Prevalence and Clinical Impact (The AIMS Study)

Taking prescribed medications as intended, or “”adherence”” is an important strategy for the management of chronic diseases. Half of the individuals with a chronic disease have poor medication adherence, and research has shown that people with poor medication adherence often have more health problems, higher hospitalization rates and a higher risk of death. Not surprisingly, medication non-adherence is extremely expensive, and is estimated to cost the Canadian health care system $8 – 10 billion every year. With an estimated 75,000 Canadians affected, and three new people being diagnosed every day, Canada has one of the highest rates of MS in the world. Multiple sclerosis (MS) is a chronic disease of the brain and spinal cord, leading to disability, severe fatigue and coordination problems. Although there is no known cure, immunomodulatory drugs (IMDs), are now commonly prescribed for MS and can lead to a substantial improvement in the health of people with MS. The benefits of IMD therapy might not be realized in people who have poor adherence; currently very little information is known about adherence to these medications. Dr. Charity Evans is working to determine how many individuals with MS have good adherence to these medications, and if people with poor adherence have higher rates of hospitalizations or worsening of the disease. She will also work to identify any time periods during therapy when an individual is more likely to be non-adherent to their IMD. Dr. Evans will be using administrative health data from three provinces (British Columbia, Saskatchewan and Manitoba), and will be studying those individuals with MS who have received an IMD between 1995 and 2008. The results of this research study will be important to determine the impact that non-adherence may have on patient health outcomes in MS, and will also help identify factors to optimize adherence to MS therapies. These methods will also be applicable to the study of adherence in other chronic diseases requiring similar drug therapies.

Improving the integration of informal caregiving in long-term residential care

Informal caregiving is defined as care provided by family and friends to a relative or friend residing in a long-term residential care (LTRC) situation. The role of informal caregivers is significant. Informal caregivers contribute more than 44 million hours of care work in LTRC facilities each year; a number that will more than double to 107 million hours in 2038 (source: Canadian Alzheimer Society). These contributions are essential given the current pressures on LTRC, which include an increasingly acute and medically/socially complex resident population and staffing levels that are typically below industry standards. Dr. Jennifer Baumbusch is conducting a series of studies focused on understanding how informal caregivers currently participate in LTRC. Dr. Baumbusch is asking the following research questions in order to better understand the role of informal caregiving and to develop and refine policies and practices to improve the integration of informal caregiving in LTRC. In what ways do informal caregivers contribute to the care of their relative? In what ways do informal caregivers contribute to the care of other residents? How do the informal caregivers’ contributions affect the everyday facility routines, such as recreational activities and meal times? Research will take place on regular units and on Special Care Units for residents with Alzheimer disease and related dementias and will recognize the unique needs of this specialized population. This program will incorporate ethnographic approaches and will be guided by input from community stakeholders. Research findings will be consolidated with existing literature to provide the basis for knowledge translation activities which will include policy forums that foster a national dialogue about caregiving in LTRC, collaborative knowledge translation research, and arts-based knowledge translation approaches. The aim of this program is to improve the integration and recognize the unique contributions of both informal caregivers and formal caregivers (staff) to care provision. Generating new policy directions will contribute to more effective healthcare services within LTRC and will ultimately improve the health of aging Canadians living in LTRC.

Optimal timing of delivery for high risk pregnancies

Early delivery (delivery before spontaneous labour by induced labour or caesarean birth) is often considered for high-risk pregnancies to prevent stillbirths and protect the mother from developing pregnancy complications. However, the optimal time for early delivery is often unclear. Although birth between 37 and 41 weeks of pregnancy was once considered ideal, babies delivered early at 37 to 38 weeks are more likely to have breathing complications than babies delivered later. Deciding when a higher-risk pregnancy should be delivered therefore involves balancing the risks to the baby from delivering too early against the risks to the mother and fetus from delaying delivery too long.

Dr. Jennifer Hutcheon's research focuses on better understanding the risks and benefits associated with early delivery and how they change on a week-by-week basis. She is studying the optimal timing of delivery for repeat caesarean surgeries (a caesarean scheduled after the caesarean delivery of a previous child). Delivery before 39 weeks is not recommended because it will increase the risk of breathing complications in the infant at birth. However, planning the surgery for a later week of pregnancy makes it more likely that the mother will go into spontaneous labour before her scheduled surgery. Early work has found that despite the risks to the baby, 62% of repeat caesarean births in British Columbia happen before 39 weeks.

Dr. Hutcheon will review the medical records from all pregnancies in BC between 2001 and 2010 stored in the BC Perinatal Database Registry to better understand the factors causing the high rate of early-term delivery in women having repeat caesareans and the potential risks associated with delaying delivery until 39 weeks or later. Using large population and clinical databases, she will also examine the week-by-week risks of delivery and delaying delivery in other higher-risk populations, such as twin pregnancies and older mothers.

Dr. Hutcheon will use the information she obtains to calculate the week-by-week risks for mother and infant associated with delivery and with delaying delivery, in order to highlight the time in pregnancy at which both risks are lowest. She anticipates that her work will help inform best practice in the province and will ultimately have a positive influence on the health of babies born in BC.

Optimizing health outcomes in arthritis care: Promoting knowledge translation through digital media

Arthritis consists of more than 100 types of conditions and is the most common cause of severe chronic pain and disability in Canada, affecting 4.4 million Canadians. While effective treatments are available, they are not consistently prescribed by health professionals or used by patients. Currently, researchers and research funding agencies have focused on tailoring research findings to specific audiences via methods such as plain language summaries, education sessions, public symposia, and media events. However, the impact of this information can be limited if it is provided at a different time and place than when people need to use it. Digital media offer a range of applications – social networking tools, interactive games, animation, and video/audio recordings – that provide tremendous flexibility for delivering “just-in-time” information when and where it is needed by the user. The depth, richness, and accessibility of this information are infinitely greater when conveyed via digital media than the current methods of publishing research results.

The goal of Dr. Linda Li's research program is to optimize the health of Canadians with arthritis by studying how people make treatment decisions and by improving the use of effective treatments using innovative digital media tools. Her program focuses in three areas: 1) understanding how patients with arthritis make treatment decisions; 2) evaluating models for health professionals who provide arthritis care; and 3) developing digital media interventions and evaluating their effectiveness to improve clinical practice, treatment decisions, and patient health.

This research program focuses on improving the health outcomes of people with arthritis by harnessing the engaging power of digital media to deliver research knowledge when and where it is needed. This approach is unique because it targets both patients’ behaviors and health professional practices to help close the gaps between what we know about arthritis management and the actual use of effective treatments. This innovative combination of health and digital media will help us modernize the way we deliver evidence-based treatment information for the 21st Century.

Optimal Timing of Medical Decisions

Questions regarding the proper timing of various medical interventions arise frequently in health care. How often should people be screened for a type of cancer? How often should patients go for laboratory tests to measure the progress of an existing disease? What is the optimal time to initiate a therapy or to switch therapies when one appears to lose its effectiveness? These are difficult decisions because of the need to trade off costs and benefits under uncertainty. For example, screening too frequently results in high system costs as well as inconvenience (and possibly harm) to the patients being screened. On the other hand, treatment outcomes are almost always better when disease is treated earlier than later. Dr. Shechter’s research program aims to develop and apply advanced analytical techniques from the field of operations research (OR) to aid decision-making in questions of clinical timing. The methodological tools of OR were designed specifically to deal with complex decision-making under uncertainty and have been applied for more than 50 years in a variety of areas. With the growing complexity of medical decision-making and the increasing availability of patient medical data, these techniques have become extremely relevant for seeking cost-effective solutions to health-care problems. Clinical timing decisions alone provide a large class of difficult decisions that are well suited for study using these analytical techniques. Dr. Shechter’s research includes two specific projects that will analyze key timing decisions for patients with chronic kidney disease: 1) when is the optimal time to prepare an arteriovenous fistula for patients who eventually start dialysis?; and 2) how often should patients on the kidney transplant waitlist be screened for conditions that may put them at increased surgical risks should a donation become available? With a 500 per cent increase in chronic kidney disease among British Columbians over the past decade, improvements in treatment and screening policies can result in substantial health benefits to patients province-wide. Dr. Shechter will work closely with frontline decision-makers, including nephrologists and kidney transplant surgeons, to develop and validate useful data-driven decision models to address these questions.

Socioeconomic status as a predictor of prenatal mental health, use of selective serotonin reuptake inhibitors during pregnancy, and infant outcomes

During pregnancy, approximately 15 per cent of women experience depression requiring medical intervention. Although these conditions are often treated with Serotonin Reuptake Inhibitor (SRI) antidepressants, these drugs are reported to increase the risks of adverse infant outcomes, including preterm birth, small for gestational age (SGA) birth, respiratory distress, and some congenital heart malformations. Infant outcomes are also influenced by other factors, including socioeconomic status, and research has shown that mothers of lower socioeconomic status are at increased risk of preterm birth, SGA birth, stillbirth, and neonatal and infant death. To complicate things further, data shows that mothers of low socioeconomic status are significantly more likely to experience depression during pregnancy and are significantly more likely to use one or more psychotropic medications (including antidepressants) to manage mental illness during pregnancy than women of higher income. The relationships between prenatal depression, socioeconomic status, use of antidepressants, and infant outcomes are complex and poorly understood.

Dr. Gillian Hanley will systematically address questions about the role socioeconomic status plays in maternal depression, antidepressant use, and infant developmental outcomes during the first year of life. She has hypothesized that maternal socioeconomic status accounts for an increased risk of adverse infant outcomes previously attributed to antidepressant exposure during pregnancy. For this study, Dr. Hanley will link a number of BC population-level administrative datasets to build the most comprehensive source of data on pregnant women of its kind in the world. This dataset will include all pregnancies and births in British Columbia between 2002 and 2009 (approximately 300,000 infants) and will provide sufficient sample size to detect differences in rare outcomes, such as congenital anomalies and neonatal/infant death. In this project, socioeconomic status will be studied as a predictor of antenatal maternal depression, antidepressant use, and infant developmental health.

These results will illuminate complex relationships between prenatal depression, antidepressant use, and infant outcomes. Given that it is ethically and medically unadvisable to undertake a randomized trial of prenatal antidepressant exposure, this population-based study will provide an unprecedented opportunity to examine key influences on infant health. Dr. Hanley's findings should help clinicians and mothers make more informed treatment decisions for their health and that of their infants.