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. 2025 Oct 31;8(1):101168.
doi: 10.1016/j.xkme.2025.101168. eCollection 2026 Jan.

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

Niels L Riemersma  1 , Tim J Knobbe  1 , Daan Kremer  1 , Svea Nolte  1 , Ute Bültmann  2 , Coby Annema  3 , Naser B N Shehab  1 , Michele F Eisenga  1 , Stefan P Berger  1 , Stephan J L Bakker  1 ; TransplantLines Investigators; C Annema  4 , S J L Bakker  4 , S P Berger  4 , H Blokzijl  4 , F A J A Bodewes  4 , M T de Boer  4 , Damman  4 , M H de Borst  4 , A Diepstra  4 , G Dijkstra  4 , R M Douwes  4 , C S E Doorenbos  4 , M F Eisenga  4 , M E Erasmus  4 , C T Gan  4 , A W Gomes Neto  4 , A M Posthumus  4 , E Hak  4 , B G Hepkema  4 , J Jonker  4 , F Klont  4 , T J Knobbe  4 , D Kremer  4 , H G D Leuvenink  4 , W S Lexmond  4 , V E de Meijer  4 , G J Nieuwenhuis-Moeke  4 , H G M Niesters  4 , L J van Pelt  4 , R A Pol  4 , A V Ranchor  4 , J S F Sanders  4 , M J Siebelink  4 , R J H J A Slart  4 , J C Swarte  4 , D J Touw  4 , M C van den Heuvel  4 , C van Leer-Buter  4 , M van Londen  4 , Charlotte A Te Velde-Keyzer  4 , E A M Verschuuren  4 , M J Vos  4 , R K Weersma  4
Affiliations

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

Niels L Riemersma et al. Kidney Med. .

Abstract

Rationale & objective: 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.

Study design: A cross-sectional retrospective patient-reported outcome measures study.

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

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

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

Analytical approach: 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.

Results: 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).

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

Conclusions: 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.

Keywords: Health-related quality of life; kidney transplant recipients; medication nonadherence; patient-reported outcomes symptom burden; symptoms of anxiety; symptoms of depression.

Plain language summary

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.

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Figures

Figure 1
Figure 1
The 10 most (A) occurring and (B) distressing symptoms based on ridit scores in 936 kidney transplant recipients.
Figure 2
Figure 2
Overview of the ridit scores of symptom occurrence and symptom distress in 936 kidney transplant recipients. A ridit (relative to an identified distribution integral transformation) score ranges between 0 and 1, in which a score >0.5 indicates a higher occurrence or distress of the symptom compared with the chosen reference group, whereas a ridit score <0.5 indicates a lower occurrence or distress of the symptom compared with the chosen reference group. The reference group in this figure is the symptom occurrence or symptom distress of all symptoms of all KTR.
See this image and copyright information in PMC

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