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Wiener klinische Wochenschrift

, Volume 126, Issue 1–2, pp 15–22 | Cite as

Patient-reported outcome reference values for patients after kidney transplantation

  • Martin KumnigEmail author
  • Gerhard Rumpold
  • Stefan Höfer
  • Paul König
  • Bernhard Holzner
  • Johannes Giesinger
  • Eva-Maria Gamper
  • August Zabernigg
  • Andrea Hoflehner
original article

Summary

Background

Patient-reported outcomes (PROs) are important in managing kidney transplant patients. Although, there are many instruments available to assess PROs, such as health-related quality of life (HRQOL), they are rarely collected in routine nephrology practices. Therefore, the aim of this study was the determination of reference values for physical and psychosocial symptom burden in kidney transplant patients.

Methods

Patients with a history of kidney transplantation being in aftercare at a nephrological outpatient unit (n = 120) were consecutively recruited, and a computer-based PRO assessment was used to assess their HRQOL reference values. It covered a broad range of clinically relevant physical and psychological symptoms, adherence to immunosuppressants, and disease-specific quality of life. On an average, PROs were assessed 2.9 times per patient, 351 times in total.

Results

For PRO monitoring in kidney transplant patients, we consider the 10th/90th percentile as being of particular clinical relevance, as patients exceeding these scores are likely to be in need of additional care.

Conclusions

With continuously rising survival rates after kidney transplantation, HRQOL of long-term transplant patients becomes increasingly important, and it is generally accepted that HRQOL improves after successful kidney transplantation. We used a computerized PRO monitoring to determine HRQOL reference values for outpatient kidney transplant patients. Routine PRO monitoring may facilitate the identification of patient issues relevant to treatment, and may contribute to improved symptom and side-effect management. Future studies providing detailed PRO values for stratified patient samples are needed.

Keywords

Health-related quality of life (HRQOL) Patient-reported outcomes (PROs) Kidney transplantation Reference values Monitoring Quality assurance 

Gesundheits- und lebensqualitätsbezogene Referenzwerte für NierentransplantpatientInnen

Zusammenfassung

Grundlagen

PatientInnenbezogene Ergebnisparameter (‚Patient-Reported Outcomes‘, PROs) sind wichtig im Therapiemanagement von NierentransplantpatientInnen. Obwohl mittlerweile zahlreiche Instrumente zur Beurteilung der gesundheitsbezogenen Lebensqualität (‚Health Related Quality of Life‘, HRQOL) zur Verfügung stehen, werden diese nur selten im Rahmen der klinischen Routine angewendet. Zielsetzung dieser Studie war daher die Entwicklung von Referenzwerten hinsichtlich der physischen und psychosozialen Belastungen von PatientInnen nach erfolgter Nierentransplantation.

Methodik

NierentransplantpatientInnen (n = 120) wurden im Rahmen ihrer postoperativen Nachsorge an einer nephrologischen Ambulanz konsekutiv rekrutiert und unter Anwendung eines computerunterstützten PRO-Assessments untersucht, um HRQOL-Referenzwerte zu erheben. Dieses Assessment umfasste klinisch relevante physische und psychische Symptome, die Adhärenz hinsichtlich der immunsuppressiven Therapie sowie die krankheitsspezifische Lebensqualität. Durchschnittlich wurde das PRO-Assessment 2,9 Mal pro PatientIn durchgeführt; über alle PatientInnen wurden gesamt 351 Assessments erhoben.

Ergebnisse

Für das PRO-Monitoring wurden Werte außerhalb des 10. und 90. Perzentils als klinisch relevant beurteilt, da bei diesen PatientInnen die Notwendigkeit einer supportiven Behandlung festgestellt wurde.

Schlussfolgerungen

Mit kontinuierlich steigenden Überlebensraten nach erfolgter Nierentransplantationen gewinnt auch die HRQOL von Langzeit-TransplantationspatientInnen an Bedeutung, und es ist allgemein anerkannt, dass sich die HRQOL nach erfolgreicher Nierentransplantation verbessert. Wir verwendeten ein computerunterstütztes PRO-Monitoring, um Referenzwerte für ambulant behandelte NierentransplantpatientInnen zu entwickeln. Ein routinemäßiges PRO-Monitoring kann die Identifikation von behandlungsrelevanten Fragen der PatientInnen erleichtern und zu einem verbesserten Management behandlungsassoziierter Symptome und Nebenwirkungen beitragen. Zukünftige Studien, die eine Erfassung detaillierter PRO-Referenzwerte für stratifizierte PatientInnengruppen gewährleisten, sind erforderlich.

Schlüsselwörter

Gesundheitsbezogene Lebensqualität (‚Health Related Quality of Life‘, HRQOL) PatientInnenorientierte Ergebnisparameter (‚Patient-Reported Outcomes‘, PROs) Nierentransplantation Referenzwerte Monitoring Qualitätssicherung 

Notes

Acknowledgments

We want to thank Jakob Pinggera, Stefan Zugal, and Barbara Weber for help with software programming and Desiree Antlinger and Christine Semmer for help with data collection. The project was partly funded by the Quality Promotion Program of the Tyrolean Health Fund (TGF-10-00-00-00-02/367).

Conflict of interest

The authors of this manuscript declare the following competing interests: Profs. Bernhard Holzner and Gerhard Rumpold are the developer and distributor of the CHES software tool.

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Copyright information

© Springer-Verlag Wien 2013

Authors and Affiliations

  • Martin Kumnig
    • 1
    Email author
  • Gerhard Rumpold
    • 1
  • Stefan Höfer
    • 1
  • Paul König
    • 2
  • Bernhard Holzner
    • 3
  • Johannes Giesinger
    • 3
  • Eva-Maria Gamper
    • 3
  • August Zabernigg
    • 4
  • Andrea Hoflehner
    • 1
  1. 1.Department of Medical PsychologyInnsbruck Medical UniversityInnsbruckAustria
  2. 2.Department of Internal Medicine IV—Nephrology and HypertensionInnsbruck Medical UniversityInnsbruckAustria
  3. 3.Department of Biological PsychiatryInnsbruck Medical UniversityInnsbruckAustria
  4. 4.Department of Internal MedicineKufstein County HospitalKufsteinAustria

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