RC-FOL Long-term patient follow-up

Conduct high response rate follow-ups

Direct Epidemio-Statistics helps you design, organize, and conduct long-term health data collection of patients. In order to minimize loss to follow-up and result variability, the epidemiological follow-up mission includes:

• Filtering patients from the target population
• Designing letters and questionnaires
• Sending, collecting, and sorting mailings
• Investigating lost to follow-up

• Clarity, specificity (target), and relevance of the question
• Ease of understanding the question (ambiguity, technicality)
• Measurability considering resources and study population

• Representativeness — will the results apply to a broad population?
• Feasibility — is there the capacity to recruit and follow patients?
• Are there any confounding factors, biases, or factors that could obscure the results?
• Ethical considerations, ensuring that vulnerable populations are not excluded with the inclusion and exclusion criteria.

• Review the inclusion and exclusion criteria
• Refine the target population, e.g., patients who received a specific treatment or therapy or are from a certain region
• Recruit through multiple channels (prescription, social media, advertising, mailings, brochures)
• Review the targeted number of patients, both initially and enrolled
• Establish an operational schedule for the recruitment plan

• Design the survey (questions, variables, and measurement instruments)
• Test the survey (clarity and ease of understanding, internally or through a pilot sample)
• Determine the mode of delivery (online, mail, in-person)
• If applicable, obtain approval from an Institutional Review Board (IRB) or participant consent
• Prepare and send the surveys (printing, mailing, or electronic delivery)
• Follow up with non-respondents to encourage survey completion
• Collect and manage data (enter into the database, verify accuracy, ensure data integrity and security)

• Electronic health records (demographics, history, treatment)
• Laboratory tests (blood analysis, imaging, other diagnostics)
• Medical records (paper-based, potentially from other hospitals)
• Clinical databases (treatment guidelines, clinical trial results, others)

• Identify and account for lost to follow-up cases (by examining records)
• Attempt to contact them (via phone, email, or mail)
• Identify possible reasons (nursing home, relocation, history, death)
• Conduct investigations online, with the last known doctors, laboratories, or other institutions, or with municipalities

• Store data securely to protect confidentiality
• Organize surveys per patient (with a unique identifier per patient)
• Backup surveys (to avoid data loss)
• Check unanswered questions, data entry, validity, accuracy (audit)

• Designing the database structure (types of stored data, relationships)
• Populating the database (medical records, previous surveys, manual entry)
• Data entry management (entry standards, quality controls)
• Data backup (copies on a server, separate storage, cloud)