# Symptom Burden and Patient-Reported Outcomes in Kidney Transplant Recipients: Results From the TransplantLines Biobank and Cohort Studies

## TL;DR

This study identifies common and distressing symptoms in kidney transplant recipients and links them to factors like gender and medication use, showing how these symptoms affect quality of life and healthcare outcomes.

## Contribution

The study provides novel insights into symptom burden determinants and their impact on patient-reported outcomes in kidney transplant recipients.

## Key findings

- The most occurring symptoms in kidney transplant recipients are tiredness, bruises, and lack of energy.
- Higher symptom burden is associated with lower health-related quality of life and increased medication nonadherence.
- Female sex, malnutrition, cyclosporine use, and proton pump inhibitor use are key determinants of symptom burden.

## Abstract

A multitude of symptoms may contribute to low health-related quality of life (HRQoL) in kidney transplant recipients (KTR). We aimed to identify the most occurring and distressing symptoms, to explore potential determinants of symptom burden, and to examine associations with patient-reported outcomes in KTR.

A cross-sectional retrospective patient-reported outcome measures study.

Stable KTR ≥1 year after transplantation participating in the TransplantLines Biobank and Cohort Studies.

Clinical variables, including sex, age, and time after transplantation.

Symptom occurrence/distress/burden, medication adherence, symptoms of depression/anxiety, societal participation, and HRQoL.

Symptoms were evaluated using ridit analyses. A burden score was calculated to explore determinants of symptom burden and its associations with other patient-reported outcomes.

We included 936 KTR (38.8% female; mean ± SD age, 55.6 ± 13.0 years) at a median [IQR] of 2.0 [1.0-9.0] years after transplantation. Based on ridit scores, most occurring symptoms were tiredness [0.724], bruises [0.718], and lack of energy [0.688]; most distressful symptoms were menstrual problems [0.679], impotence [0.654], and joint pain [0.611]. Worse nutritional status (P < 0.001), being female (P < 0.001), cyclosporine use (P = 0.005), and proton pomp inhibitor use (P < 0.001) were associated with higher symptom burden. Higher symptom burden was associated with medication nonadherence, symptoms of depression and anxiety, lower societal participation, and lower physical and mental HRQoL (st.β = –0.53, 95% CI –0.59 to –0.47, P <0.001 and st.β=-0.53, 95% CI –0.60 to –0.46, P < 0.001, respectively).

No causality can be established because of the cross-sectional design.

The most occurring symptoms were tiredness, bruises, and lack of energy, and the most distressing symptoms were menstrual problems, impotence, and joint pain. The strongest determinants of symptom burden were female sex, malnutrition, cyclosporine use, and proton pump inhibitor use. The associations of symptom burden with patient-related outcomes underline the importance of addressing symptom status after transplant.

Symptom burden of immunosuppressive medication may cause lower health-related quality of life (HRQoL) in kidney transplant recipients (KTR). Therefore, we aimed to assess (1) symptom occurrence and distress, (2) determinants of symptom burden, and (3) associations of symptom burden with HRQoL and other patient-reported outcomes. In 936 KTR, the most occurring symptoms were tiredness, bruises, and lack of energy, and the most distressing symptoms were menstrual problems, impotence, and joint pain. Being female, having malnutrition, using cyclosporine, and using proton pump inhibitors were determinants of high symptom burden. Furthermore, a higher symptom burden was associated with more medication nonadherence, more symptoms of anxiety/depression, lower societal participation, and lower physical and mental HRQoL. These findings may help improve patient-centered health care.