Tags

Type your tag names separated by a space and hit enter

Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease - a four-phase mixed methods study.
BMC Nephrol. 2019 09 02; 20(1):344.BN

Abstract

BACKGROUND

Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD.

METHODS

A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires.

RESULTS

The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal.

CONCLUSIONS

The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare.

Links

PMC Free PDF

Authors+Show Affiliations

van der Willik EM
Department of Clinical Epidemiology, Leiden University Medical Centre, PO Box 9600, 2300 RC, Leiden, The Netherlands. E.M.van_der_Willik@lumc.nl.
Meuleman Y
Department of Clinical Epidemiology, Leiden University Medical Centre, PO Box 9600, 2300 RC, Leiden, The Netherlands.
Prantl K
Dutch Kidney Patients Association, Groot Hertoginnelaan 34, 1405 EE, Bussum, The Netherlands.
van Rijn G
Department of Clinical Epidemiology, Leiden University Medical Centre, PO Box 9600, 2300 RC, Leiden, The Netherlands.
Bos WJW
Department of Nephrology, Leiden University Medical Centre, PO Box 9600, 2300 RC, Leiden, The Netherlands. Department of Internal Medicine, St Antonius Hospital, Koekoekslaan 1, 3435 CM, Nieuwegein, The Netherlands.
van Ittersum FJ
Department of Nephrology, Amsterdam University Medical Centre, De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands.
Bart HAJ
Dutch Kidney Patients Association, Groot Hertoginnelaan 34, 1405 EE, Bussum, The Netherlands.
Hemmelder MH
Nefrovisie Foundation, Moreelsepark 1, 3511 EP, Utrecht, The Netherlands. Department of Internal Medicine, Medical Centre Leeuwarden, Henri Dunantweg 2, 8934 AD, Leeuwarden, The Netherlands.
Dekker FW
Department of Clinical Epidemiology, Leiden University Medical Centre, PO Box 9600, 2300 RC, Leiden, The Netherlands.

MeSH

AdultAgedAged, 80 and overFemaleHumansMaleMiddle AgedNetherlandsPatient Reported Outcome MeasuresRegistriesRenal Insufficiency, ChronicReproducibility of ResultsSurveys and QuestionnairesYoung Adult

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

31477039

Clinical Trial Links

RECOVAC - Long Term Efficacy and Safety of COVID-19 (SARS-CoV-2) Vaccination in Kidney Disease Patients

Citation

van der Willik, Esmee M., et al. "Patient-reported Outcome Measures: Selection of a Valid Questionnaire for Routine Symptom Assessment in Patients With Advanced Chronic Kidney Disease - a Four-phase Mixed Methods Study." BMC Nephrology, vol. 20, no. 1, 2019, p. 344.
van der Willik EM, Meuleman Y, Prantl K, et al. Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease - a four-phase mixed methods study. BMC Nephrol. 2019;20(1):344.
van der Willik, E. M., Meuleman, Y., Prantl, K., van Rijn, G., Bos, W. J. W., van Ittersum, F. J., Bart, H. A. J., Hemmelder, M. H., & Dekker, F. W. (2019). Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease - a four-phase mixed methods study. BMC Nephrology, 20(1), 344. https://doi.org/10.1186/s12882-019-1521-9
van der Willik EM, et al. Patient-reported Outcome Measures: Selection of a Valid Questionnaire for Routine Symptom Assessment in Patients With Advanced Chronic Kidney Disease - a Four-phase Mixed Methods Study. BMC Nephrol. 2019 09 2;20(1):344. PubMed PMID: 31477039.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease - a four-phase mixed methods study. AU - van der Willik,Esmee M, AU - Meuleman,Yvette, AU - Prantl,Karen, AU - van Rijn,Giel, AU - Bos,Willem Jan W, AU - van Ittersum,Frans J, AU - Bart,Hans A J, AU - Hemmelder,Marc H, AU - Dekker,Friedo W, Y1 - 2019/09/02/ PY - 2018/12/06/received PY - 2019/08/12/accepted PY - 2019/9/4/entrez PY - 2019/9/4/pubmed PY - 2020/11/5/medline KW - Chronic kidney disease (CKD) KW - Dialysis KW - End-stage kidney disease (ESKD) KW - Patient-reported outcome measures (PROMs) KW - Pre-dialysis KW - Questionnaire KW - Symptom burden KW - Value-based healthcare SP - 344 EP - 344 JF - BMC nephrology JO - BMC Nephrol VL - 20 IS - 1 N2 - BACKGROUND: Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD. METHODS: A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires. RESULTS: The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal. CONCLUSIONS: The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare. SN - 1471-2369 UR - https://www.unboundmedicine.com/medline/citation/31477039/Patient_reported_outcome_measures:_selection_of_a_valid_questionnaire_for_routine_symptom_assessment_in_patients_with_advanced_chronic_kidney_disease___a_four_phase_mixed_methods_study_ DB - PRIME DP - Unbound Medicine ER -