UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

Qualitative exploration of the renal stone patients' experience and development of the renal stone-specific patient-reported outcome measure

Ragab, M; Baldin, N; Collie, J; Tran, MGB; Al-Hayek, S; S Parsy, K; Armitage, J; (2020) Qualitative exploration of the renal stone patients' experience and development of the renal stone-specific patient-reported outcome measure. BJU International , 125 (1) pp. 123-132. 10.1111/bju.14873. Green open access

[thumbnail of Tran_Qualitative exploration of the renal stone patients' experience and development of the renal stone-specific patient-reported outcome measure_AAM.pdf]
Preview
Text
Tran_Qualitative exploration of the renal stone patients' experience and development of the renal stone-specific patient-reported outcome measure_AAM.pdf - Accepted version

Download (763kB) | Preview

Abstract

OBJECTIVES: To investigate the experience of patients living with renal calculi via a qualitative methodology, aiming to develop and validate a disease-specific patient-reported outcome measure (PROM) for renal stones, the Cambridge Renal Stone PROM (CReSP). PATIENTS, SUBJECTS AND METHODS: Patients with radiologically confirmed renal calculi who had undergone a range of management options were invited to focus groups or semi-structured interviews to elicit patient input and generate the PROM content. The developed renal stone PROM underwent validity studies included Cronbach's α for internal consistency, Spearman's and Pearson's correlation coefficients for test-retest reliability. Discriminant validity was assessed by Pearson's correlation coefficients vs the EuroQol five-dimensional five-level questionnaire (EQ-5D-5L). Our project has Health and Social Care Research Ethics Committee approval. RESULTS: A total of 106 subjects participated in creating the newly developed PROM. In all, 36 patients were invited to 22 semi-structured interviews and four focus groups, until reaching saturation. Major issues reported, and themes selected for the renal stone PROM included pain, anxiety, limitations to social life and tiredness, urinary symptoms, dietary changes' impacts, and gastrointestinal tract symptoms. Reliability analysis for 30 patients to determine internal consistency using Cronbach's α with a mean (range) of 0.91 (0.90-0.93) within domains and Cronbach's α between domains was 0.92. Average inter-item Pearson's and Spearman's correlation within domains was performed, with a Pearson's correlation mean (range) of 0.77 (0.73-0.85) and Spearman's correlation mean (range) of 0.72 (0.63-0.77). The test-retest Pearson's correlation mean (range) was 0.85 (0.57-0.95). Validity assessment was performed for 20 patients vs 20 controls. Pearson's correlation with EQ-5D-5L was -0.74, showing the newly developed PROM successfully discriminated patients with kidney stones. Our final renal stone PROM consists of 14 questions that are rated on a Likert scale; the higher the score, the worse the effect on a patient's quality of life. CONCLUSIONS: Although pain was the most frequent symptom, other health-related and social well-being issues significantly impacted patients' lives. Our validated patient-derived CReSP is a new instrument, specifically tailored to measure renal stone disease health outcomes from the patient's point of view.

Type: Article
Title: Qualitative exploration of the renal stone patients' experience and development of the renal stone-specific patient-reported outcome measure
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/bju.14873
Publisher version: https://doi.org/10.1111/bju.14873
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: #KidneyStones, #UroStone, patient-reported outcome measure, quality of life, renal calculi
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Surgery and Interventional Sci
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Surgery and Interventional Sci > Department of Surgical Biotechnology
URI: https://discovery.ucl.ac.uk/id/eprint/10085681
Downloads since deposit
83Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item