PRO Measures and Development

Developed for the Therapies for Long COVID in non-hospitalised individuals (TLC) Study, the Symptom Burden Questionnaire for Long COVID (SBQ-LC) is a patient-reported outcome (PRO) measure and multi-domain item bank that has been developed according to international best-practice and regulatory guidance. The SBQ™-LC system measures symptom burden in adults (18+ years) with post-acute sequelae of COVID-19 (PASC), also known as “post COVID-19 condition” or “Long COVID”. With uptake in over 70 countries, the SBQ-LC is available for use in routine care and as a research tool.

The SBQ-LC is currently being adapted adolescents (11 to 17 years) and validated for use in Long COVID and other conditions with significant symptom burden involving multiple body systems.

Related links:

• Symptom Burden Questionnaire™ for Long COVID | University of Birmingham

Led by Professor Derek Kyte at the University of Worcester, in collaboration with CPROR, the aim of this research was to create and authenticate a concise somatic kidney symptom burden questionnaire (KSB-Q) using Rasch Analysis. Assessing the somatic symptoms most relevant to patients with Chronic Kidney Disease (CKD) currently involves completing numerous patient-reported outcome measures (PROMs). This can result in a significant questionnaire burden and decreased compliance.

Additionally, many PROMs utilized in CKD lack substantial evidence regarding crucial measurement properties and were not crafted using robust contemporary psychometric techniques. The resultant measure - The KSB-Q - represents a short, accessible, symptom PRO with evidence of strong psychometric properties covering 9 key symptom areas (fatigue, pain, memory/concentration, poor sleep, skin problems, gastrointestinal problems, dizziness, restless legs, and shortness of breath)  which offers a valid, well-targeted, reliable, unidimensional measure of somatic kidney symptom burden.

Development, Rasch analysis and validation of the kidney symptom burden questionnaire (KSB-Q) - PubMed

Research led by the University of Birmingham and funded by the British Heart Foundation (BHF) could improve the lives of those living with an artificial heart pump.University of Birmingham and University Hospitals Birmingham NHS Foundation Trust worked with LVAD patients to produce a new Patient Reported Outcome Measure (PROM) that will better measure their quality of life.

Related links:

• New tool could lead to improved care of patients living with artificial heart pump

• Living with a left ventricular assist device: Capturing recipients experiences using group concept mapping software

• Development of a quality of life measure for left ventricular assist device recipients using a mixed methods approach

This work aimed to generate methodology for developing core outcome sets for use in population health research.