Meetings with Patients
During our interviews with community members who have used current cholesterol medications, the need for an alternative medication became evident to our team. In one interview, the patient described the symptoms after their doctor prescribed them two different kinds of statins. The prescription caused the person to experience discomfort that made it seem like their body had aged thirty years. They described extreme joint pain and muscle stiffness in knees, fingers and wrists. The patient described the side effects from the medication as lowering their quality of life to a point where they'd prefer the 10% increased risk of a heart attack than continuing with statin treatments. The patient was referred to a cardiologist who prescribed him Praluent as an alternative treatment and while the patient no longer experienced adverse side effects, the injection added up to $750 a month.
Survey
Overview
In pursuit of collecting valuable qualitative and subjective data directly from patients, we conducted a comprehensive survey spanning four months. The survey questions investigates various areas, such as lifestyle, demographics, patient experiences, perspectives on current medication, and medical history. These data are essential for evaluating the efficacy of existing medical treatments and interventions. Furthermore, our survey also allows us to identify potential risk factors, patient-reported outcomes, and levels of patient satisfaction. These insights are instrumental in the development of evidence-based solutions aimed at enhancing the quality of life for our patients. The survey empowers us to investigate their specific needs and preferences in depth, directing our efforts to provide more tailored and effective solutions.
Ethical Considerations and Participant's Safety
As part of our integrated human practices effort, we recognized the importance of prioritising ethical conduct and safeguarding the well-being of the individuals involved. Our team embarked on a journey to understand patients' perspectives on current high cholesterol treatments and the challenges around them. We initiated a survey and interview, capturing insights from patients and addressing the problem from their perspective. To ensure the study proposal met the ethical standards, we approached the University of Calgary Ethics Review Board (REB) to review and approve our study protocol, consent forms, and survey/interview questions, ensuring we addressed all ethical considerations.
Iterative Survey Development Process
The University of Calgary promotes high ethics standards consistent with the Tri-Council Policy Statement (TCPS2 2022), Ethical Conduct for Research Involving Humans, thereby ensuring respect for persons, concern for their welfare and justice.
The review and approval process with REB is collaborative and iterative. They conducted a thorough review of our ethics approval application, including our study proposal, assessing its design, methods, and potential impact on participants. We worked closely with them to continue modifying and improving our study design to ensure that the research approach aligns with established guidelines.
Furthermore, we actively collaborated with Georgia Balsevich from Genome Alberta to review the survey questions. Her invaluable input led to the incorporation of lifestyle-related inquiries, encompassing exercise frequency, smoking and alcohol consumption, as well as perceived stress levels. These additions were made with the goal of providing a comprehensive perspective on patients' experiences.
Informed Consent and Participant Privacy
Respecting the autonomy of participating and their right to informed consent was a crucial part of our human practices effort. The survey is anonymous and no personal identifiers such as name, location, and contact information are recorded. The interviewed participants' identities are only known to the primary investigators listed in the ethics approval, and their personal information remains protected and encrypted on the REB-approved data retention software. Every participant in the survey and interviews received comprehensive information about the study's purpose, procedures, potential risks, and benefits. Since the interviews are also recorded and shared on various podcast platforms, we ensured that participants were aware of the interview questions and granted us media consent to release their audio to the public.
Data Retention and Protection
We adhere to strict data retention and protection from the REB, ensuring that all collected information is stored securely on the University of Calgary's authorised data retention software. Personal information is stored encrypted and anonymized. All data collected will be retained for five years after the data project is closed in adherence to the retention period enforced by the University of Calgary and will be deleted at the discretion of the principal investigator or the University after the retention period.
Survey results
- 25/114 people have high cholesterol
- 15/25 are on cholesterol medication or was on the medication
Prevalence of High Cholesterol
The survey collected a total of 114 responses. From the individuals with cholesterol, the survey revealed that only 22% of participants were taking medication.
Medication Usage
Among these high cholesterol patients, 40% of them don’t take any medication and 60% of them managed their condition with the use of high cholesterol medication, suggesting that pharmaceutical interventions are commonly employed to manage their condition.
Familial High Cholesterol
A significant portion (76%) of the subgroup of high cholesterol patients have familial high cholesterol, indicating potential genetic predisposition to the condition among these individuals. 67% of familial high cholesterol patients are currently taking medication for managing and monitoring their conditions.
Satisfaction Levels
While some individuals were neither satisfied nor dissatisfied (6 out of 14) with their medication, others expressed a degree of dissatisfaction (1 out 14). The majority fell in the “Somewhat Satisfied” and “Satisfied” categories (7 out 14), suggesting that most patients have generally positive experience with their medications.
Long-Term Medication Use
Majority of high cholesterol patients who are on medication had been taking them for more than 3 years (12 out of 15) suggests that chronic management is often necessary for this condition, especially for those who have familial hypercholesterolemia in which diet and exercise are not effective in their case. This highlights the importance of long-term adherence to medication regimens and continuous monitoring of cholesterol level.
Reported Side Effects
- Muscle pain
- Chronic fatigue
- Migraines
- Poor vision
- Difficulties exercising
These side effects can significantly impact an individual’s quality of life and may influence their adherence to medication. However, the survey results indicated that most individuals experiencing these side effects reported “Neither satisfied nor dissatisfied” and “somewhat satisfied/satisfied”, suggesting that these side effects might not have as much impact on their satisfaction level with the drug. It is also worth noting that the sample size is very small so it is difficult to make a definite conclusion from the results.
Conclusion and Reflection
The survey results on high cholesterol management offer insights into the experiences and strategies of individuals with this health condition. One surprising observation is the prevalence of familial hypercholesterolemia among respondents, as the majority of high cholesterol patients in this survey fell into this category. This finding has implications for tailoring treatments to address genetic factors in cholesterol management.
Another unexpected outcome relates to the satisfaction level results. Despite experiencing side effects that could potentially impact their quality of life, most patients reported a level of satisfaction with their medication. This contrasts with our initial presumptions and biases, which led us to anticipate dissatisfaction due to adverse side effects. This suggests a need for a closer examination of the need of a new medication for high cholesterol patients, and if there are other underlying reasons that may contribute to dissatisfaction toward existing treatments. Further investigation may be necessary to understand the complexity of patient experiences.
It is crucial to take into account that the sample size used in this study is relatively small. As a result, the scope and generalizability of the conclusion we can draw are constrained. The reliability and validity of the findings from the survey are in doubt due to the limited sample size. Therefore, while the survey results provide valuable insights, caution should be exercised when making definitive statements based solely on this limited sample. Expanding the sample size in the future may yield a more comprehensive view of patients' experience.