Opportunities - Healthcare needs of Women with Polycystic Ovary Syndrome

Healthcare needs of Women with Polycystic Ovary Syndrome

University of Alberta

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Project Background

Polycystic ovary syndrome (PCOS) is a disorder that affects 15-20% of women in Canada and globally. Women with PCOS can face multiple health risks including obesity, metabolic syndrome, type 2 diabetes, and heart disease. Due to the high prevalence of PCOS, it’s important that these women are identified within the healthcare system and support is provided in managing risks proactively throughout their lives. Unfortunately, we simply do not know how well the Canadian healthcare system currently identifies and supports these patients and their health.

 

The aim of this research is to find out more about diagnosis of PCOS, patient experiences with the healthcare system in Alberta, and the healthcare needs of these women. We also intend to explore how women with PCOS and their families could get involved in PCOS research in a way that will improve outcomes. Our goal is not only to obtain this knowledge, but also inform clinicians and future health policy. We are looking for both research participants and patient partners in research. Patient partners help advise and inform the development of research studies, participant recruitment strategies and dissemination of findings.

 

We will work with the Alberta Strategy for Patient-Oriented Research Unit (AbSPORU; Patient Engagement platform) and Alberta Health Services to develop surveys and determine strategies for including patients as partners and participants in research. Using this valuable lived-experience, we will work with other health experts and professionals to assess the patient-centered healthcare needs and concerns of these women to ensure better healthcare, intervention, preventative and support strategies.

 

Roles and Responsibilities

This study requires input from patients and their families in order to identify outcomes that are meaningful and relevant to patients and to design realistic intervention strategies. We are looking for both patient partners and participants.

 

There are 3 ways to engage in this project:

  1. Patient Partner: As a research team member, input from patient partners may include: informing research priorities and/or topics, aiding in development of research questions and outcomes to be studied, identifying ways to effectively share the findings of research with patients and doctors, giving advice on potential issues and solutions such as compliance, ensuring transparency and practical strategies for recruitment, helping recruit research participants and helping develop written information and input on key findings.
  2. Study Participant: We are looking for participants in studies currently underway or planned for the near future. A study we are recruiting for in 2020 (study title: Heart Health in PCOS) will help us understand why women with PCOS are at increased risk for heart disease. We will be looking for participants previously diagnosed with Polycystic Ovary Syndrome (PCOS) or who are a healthy individuals who can be included as part of a ‘control group’ (age 30 to 45 yrs and overweight). In this study we will measure early markers of heart disease including high blood fats, heart function and blood vessel disease. We want to test how fat and sugars are processed in the body by women with and without PCOS and if it is related to blood vessel and heart function in women with PCOS. This is a pilot study that is similar to but will not be part of a larger study (about 130 women) that is being planned for a later date, unless you decide you would like to participate in that one as well.
  3. Survey Participant: We are looking for research participants to help in evaluating the lived experience and health of patients (study title: Understanding Health Care in PCOS). We aim to find out more about the diagnosis of PCOS, patient contact with the health care system, and the health-care needs of women with PCOS. As a PCOS patient, you can provide valuable insight into your lived experience with PCOS and the experiences you have had with the Alberta healthcare system. Sharing your knowledge and experiences will help us understand the gaps in care encountered along the health journey of each patient, and by evaluating trends, we can be informed as to how to best support patients going forward. We will be collecting data though surveys and some of the data collected can be published and/or put into action. In the end, we hope these findings will influence clinician treatment decisions and even healthcare policy in an effort to improve the quality of life and health of women with PCOS.

 

Time Commitment

  1. Patient Partner: There are many options and the time commitment will be determined by the patient partner. Involvement can be reviewing a study design and giving your input – perhaps 6 hours. Or the commitment can be involvement in a particular study, where consultation and/or a particular role is required throughout.
  1. Study Participant: The current study (Heart Health in PCOS; Pilot study) will only require about 5 hours of your time. Future studies planned for a later date may require more of your time if it involves a dietary intervention.
  2. Survey Participant: Your involvement could be only one or two 30-minute surveys.

 

Reimbursement/Compensation

  1. Patient Partner: Remuneration will be provided for time spent.
  2. Study Participant: Reimbursement for parking and a small gift certificate of appreciation (up to $50, depending on time commitment) may be provided.
  3. Survey Participant: Surveys would be volunteer only.

 

Contact

Interested in getting involved or want more information or register with us today?

 

Connect with the contact person:

 

Principle Investigator

Dr. Donna Vine

 

Clinical Coordinator

Dr. Mich Wilke
780.248.1252

PCOS.Together@ualberta.ca

 

If you choose to send us an email, please only send your contact information (not personal details or health information) as it is not secure and your privacy cannot be guaranteed.