We assess and determine which measurement tools work well for people with chronic kidney disease and best help clinicians assess patients . Specifically, we assess tools that measure Patient-Reported Outcomes (PROs), which are tools that directly measure symptoms, quality of life, satisfaction with care etc. based on information given by patients. These tools are especially invaluable to assessing and treating patients because they avoid adding other’s interpretation to the results. We have validated and are currently validating PROs tools for patients with chronic kidney disease including:
- PROMIS-29 Adult Profile
Why is this project important?
Quality patient care requires patients to be able to communicate their symptoms and how they are feeling with their health care providers. PROs are valuable to patients, clinicians, and policy-makers as they:
- Allow patients to report information about their health status and quality of life without directly speaking to their health care provider
- inform therapeutic choices, disease management practices, reimbursement decisions, and health policy
- provide information that supplements other measures of clinical outcomes, such as mortality or hospitalization
Despite their value, PROs measurement tools have not been validated among patients with chronic kidney disease. Validation tests whether or not a tool is suitable for a specific group of people. Lack of validation creates uncertainty when choosing between tools or deciding whether to use it. To fill this gap, we conduct validation studies to find the best tool for people with chronic kidney disease.
How are we carrying out this project?
PROMIS are tested for internal reliability, test-retest reliability, convergent validity and known group comparisons. We test against existing, validated, standard tools that measure similar dimensions of emotional and social distress, depression, and anxiety. Including:
- Kidney Disease Quality of Life (KDQoL) questionnaire
- Patient Health Questionnaire (PHQ9)
- General Anxiety Disorder (GAD7)
- Social Difficulties Inventory (SDI)
How to Get Involved
Contact us at firstname.lastname@example.org. We welcome community partnerships, collaborations with researchers, volunteers, and research students.
If you are applying to join our team as a research student or volunteer, email us with:
- Motivation letter (1 page)
- Transcript (if applicable)
How to Support Us
We are a non-profit organization and your support goes a long way in pushing the frontier for chronic kidney disease research and improving care for patients whose lives are affected by the life-changing disease. If you are able to, we invite you to support our work.