Kidney Health Initiative (KHI): Prioritizing Symptoms of ESRD Patients for Developing Therapeutic Interventions workshop

By Rick Kempinski

The “Prioritizing Symptoms of ESRD Patients for Developing Therapeutic Interventions” workshop took place from January 8th through January 10th in Washington, DC. The meeting convened various stakeholders, including patients and care givers. Discussion centered around three symptoms of ESRD that were identified as priorities through previous patient focus groups: Fatigue, Insomnia, and Muscle Cramps.

The goal of the meeting was to:

  • Establish collaborative relationships with and an ongoing unified dialogue among the diverse set of stakeholders attempting to advance the development of improved therapies for patient-prioritized symptoms;
  • Develop a shared understanding of the symptoms that patients prioritize for intervention and the factors driving those decisions; and
  • Identify promising opportunities and pathways for future work related to both research and practice for symptom alleviation and how they can be approached collaboratively across key stakeholders.


During the meeting, the various members were asked to think about current treatment approaches and their positive attributes, as well as gaps. They were asked to envision what symptom treatments should be in the future and worked towards generating ideas for getting there. To do this, each member chose a symptom to focus on, and breakout groups were created to address these symptoms. These breakout groups convened to come up with ideas on addressing these during the morning of the first day, and then presented them to the larger group in the afternoon. On the second day, the groups came up with action plans and next steps on how to move forward with these priority symptoms to help patients.

IMG_20180109_151514.jpgIn attendance at the meeting were several patients from Baltimore, MD and Washington, DC who experience these symptoms after in-center dialysis. Their perspective and engagement in this workshop helped tremendously in coming up with an action plan and moving the project forward.

“We were pleased with the diversity of dialysis stakeholders — from nephrologists, patients, industry representatives, to payers — that the workshop brought together”, said Jenny Flythe, Co-chair of the workgroup. She continued, “This diversity in perspectives facilitated rich engagement about innovative ways to approach symptom research. We hope the workshop will spark new collaborations, research studies, innovation, and ultimately new approaches to the prevention and management of hemodialysis-related symptoms. The workshop marked the culmination of this KHI project but hopefully the beginning of a period of innovation in symptom research and clinical care.”

In attendance was Lamer Davis, a care-partner for his fiancé, Paris Jackson, who receives in-center hemodialysis at Johns Hopkins in Baltimore, MD. This was the first time that they participated in a KHI workshop and were pleased by their engagement in the event. Lamer stated, “I really enjoyed the welcome we received.  It was informative and a new experience for me.  I hope we have another opportunity to attend a workshop where the patient voice can be heard.”

To finalize this project, a report on the results of this workshop will be generated and available on the KHI website (www.kidneyhealthinitiative.org) in Summer 2018.

To learn more about the current project, please visit the workgroup page.

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The “Prioritizing Symptoms of ESRD Patients for Developing Therapeutic Interventions” workshop took place from January 8th through January 10th in Washington, DC. The meeting convened various stakeholders, including patients and care givers. Discussion centered around three symptoms of ESRD that were identified as priorities through previous patient focus groups: Fatigue, Insomnia, and Muscle Cramps.

The goal of the meeting was to:

  • Establish collaborative relationships with and an ongoing unified dialogue among the diverse set of stakeholders attempting to advance the development of improved therapies for patient-prioritized symptoms;
  • Develop a shared understanding of the symptoms that patients prioritize for intervention and the factors driving those decisions; and
  • Identify promising opportunities and pathways for future work related to both research and practice for symptom alleviation and how they can be approached collaboratively across key stakeholders.


During the meeting, the various members were asked to think about current treatment approaches and their positive attributes, as well as gaps. They were asked to envision what symptom treatments should be in the future and worked towards generating ideas for getting there. To do this, each member chose a symptom to focus on, and breakout groups were created to address these symptoms. These breakout groups convened to come up with ideas on addressing these during the morning of the first day, and then presented them to the larger group in the afternoon. On the second day, the groups came up with action plans and next steps on how to move forward with these priority symptoms to help patients.

IMG_20180109_151514.jpgIn attendance at the meeting were several patients from Baltimore, MD and Washington, DC who experience these symptoms after in-center dialysis. Their perspective and engagement in this workshop helped tremendously in coming up with an action plan and moving the project forward.

“We were pleased with the diversity of dialysis stakeholders — from nephrologists, patients, industry representatives, to payers — that the workshop brought together”, said Jenny Flythe, Co-chair of the workgroup. She continued, “This diversity in perspectives facilitated rich engagement about innovative ways to approach symptom research. We hope the workshop will spark new collaborations, research studies, innovation, and ultimately new approaches to the prevention and management of hemodialysis-related symptoms. The workshop marked the culmination of this KHI project but hopefully the beginning of a period of innovation in symptom research and clinical care.”

In attendance was Lamer Davis, a care-partner for his fiancé, Paris Jackson, who receives in-center hemodialysis at Johns Hopkins in Baltimore, MD. This was the first time that they participated in a KHI workshop and were pleased by their engagement in the event. Lamer stated, “I really enjoyed the welcome we received.  It was informative and a new experience for me.  I hope we have another opportunity to attend a workshop where the patient voice can be heard.”

To finalize this project, a report on the results of this workshop will be generated and available on the KHI website (www.kidneyhealthinitiative.org) in Summer 2018.

To learn more about the current project, please visit the workgroup page.

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Monday, February 5, 2018