Developing Electronic Patient-Reported Outcome Measurement Toolkit for Transplant Recipients and Candidates

Our team is developing an electronic Patient-Reported Outcome Measurement toolkit (ePROM) that is designed specifically to care for transplant recipients and connects to their electronic patient record. Similar to other PROM tools, it will assess patients’ symptoms, well-being and quality of life, improving patient care and long-term health outcomes. However, unlike other tools, our tool will be designed for transplant recipients .
Our toolkit will focus on the physical symptoms and psychosocial needs that lead to lower quality of life, emergency room visits, and hospital admissions for transplant recipients. At its core, it is designed to have superb measurement precision and flexibility by using the innovative computer adaptive testing item banks developed by the NIH Patient Reported Outcomes Measurement Information System. Altogether, the toolkit will contain:

  • Short questionnaires that assess illness and treatment
  • Guides for symptom management
  • Education for patients and staff
  • Questionnaires to determine acceptability

Our initiative creates an innovative electronic assessment toolkit that introduces a successful approach from other medical areas to transplant care.

Why is this important?

When similar measurement tools to ePROM are used regularly in other medical fields, studies have shown they

  • Improves patients’ satisfaction and quality of life
  • Prevents hospital admissions
  • Improves communication between patients and clinicians
  • Improves self-care
  • Improves survival
  • Increases adherence to treatment

We hope to bring these successes into transplant care, where currently, 30-40% of transplant recipients face symptoms and distress that go unnoticed after transplants. These physical and psychosocial signs can lead to lower quality of life, emergency room visits, and hospital admissions. These adverse results may be avoided with the routine use of a PROM tool.

Unfortunately, no known PROM tools exist that are designed specifically for transplant care. Our initiative to research, design, and test the ePROM will ensure a PROM tool that is optimally suited for transplant recipients can be introduced to their care.

How are we carrying out this project?

Our research will achieve 3 objectives, each entailing a set of different research activities.

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How to Get Involved

Contact us at 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:

  1. Resume
  2. Motivation letter (1 page)
  3. 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.

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