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Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease:
David T Selewski1, Susan F Massengill, Jonathan P Troost
1Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, 1500 E Medical Center Drive, SPC5297, Ann Arbor, MI, 48109-5297, USA, dselewsk@med.umich.edu.
Insights
Patient-reported outcomes using the PROMIS pediatric instrument effectively capture the impact of chronic kidney disease (CKD) in children. PROMIS domains sensitively reflect disease activity and severity, aiding in CKD management.
Area of Science:
- Pediatric Nephrology
- Clinical Outcomes Research
- Patient-Reported Outcomes
Background:
- Chronic kidney disease (CKD) is a significant health concern in pediatric nephrology.
- Assessing the impact of CKD on children's quality of life is crucial for effective management.
Purpose of the Study:
- To evaluate the sensitivity of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric instrument.
- To determine if PROMIS pediatric domains correlate with indicators of disease severity and activity in pediatric CKD.
Main Methods:
- A cross-sectional study involving 233 children (8-17 years) with CKD across 16 North American institutions.
- Collected data on disease activity (hospitalization, edema, medications) and severity (kidney function, comorbidities).
- Administered PROMIS pediatric domains (depression, anxiety, social-peer relationships, pain interference, fatigue, mobility, upper extremity function) via web-based questionnaires.
Main Results:
- PROMIS domains demonstrated responsiveness to CKD activity indicators and comorbidities.
- Worse PROMIS scores were observed with recent hospitalizations, edema, and coexisting medical conditions.
- Specific PROMIS domains like depression, anxiety, pain interference, fatigue, and mobility showed significant impact (Absolute Effect Sizes ranging from 0.33 to 0.83).
Conclusions:
- PROMIS pediatric domains (depression, anxiety, social-peer relationships, pain interference, mobility) are sensitive to the clinical status of children with CKD.
- PROMIS instruments offer a valuable tool for studying the impact of CKD in pediatric populations.
- Further research is needed to assess PROMIS responsiveness to changes in disease status over time.
Background And Objectives:
Chronic kidney disease is a persistent chronic health condition commonly seen in pediatric nephrology programs. Our study aims to evaluate the sensitivity of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric instrument to indicators of disease severity and activity in pediatric chronic kidney disease.
Methods:
This cross sectional study included 233 children 8-17 years old, with chronic kidney disease from 16 participating institutions in North America. Disease activity indicators, including hospitalization in the previous 6 months, edema, and number of medications consumed daily, as well as disease severity indicators of kidney function and coexisting medical conditions were captured. PROMIS domains, including depression, anxiety, social-peer relationships, pain interference, fatigue, mobility, and upper extremity function, were administered via web-based questionnaires. Absolute effect sizes (AES) were generated to demonstrate the impact of disease on domain scores. Four children were excluded because of missing glomerular filtration rate (GFR) estimations.
Results:
Of the 229 children included in the final analysis, 221 completed the entire PROMIS questionnaire. Unadjusted PROMIS domains were responsive to chronic kidney disease activity indicators and number of coexisting conditions. PROMIS domain scores were worse in the presence of recent hospitalizations (depression AES 0.33, anxiety AES 0.42, pain interference AES 0.46, fatigue AES 0.50, mobility AES 0.49), edema (depression AES 0.50, anxiety AES 0.60, pain interference AES 0.77, mobility AES 0.54) and coexisting medical conditions (social peer-relationships AES 0.66, fatigue AES 0.83, mobility AES 0.60, upper extremity function AES 0.48).
Conclusions:
The PROMIS pediatric domains of depression, anxiety, social-peer relationships, pain interference, and mobility were sensitive to the clinical status of children with chronic kidney disease in this multi-center cross sectional study. We demonstrated that a number of important clinical characteristics including recent history of hospitalization and edema, affected patient perceptions of depression, anxiety, pain interference, fatigue and mobility. The PROMIS instruments provide a potentially valuable tool to study the impact of chronic kidney disease. Additional studies will be required to assess responsiveness in PROMIS score with changes in disease status over time.
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