Clare founded HPR in 2003 to manage the licensing and linguistic validation of questionnaires designed and developed in the course of her research and that of the researchers and PhD students working in her research unit at Royal Holloway, University of London. Royal Holloway had previously undertaken the licensing but as demand for the measures increased, the College welcomed the foundation of HPR to undertake this work. Clare retired from Royal Holloway in 2020 and moved her Health Psychology Research Unit and on-going projects to her company, HPR, where she is now based. She is now Professor Emerita in the psychology department at Royal Holloway.
Starting with measures for diabetes needed for her own research, Clare went on to develop a range of Patient-Reported Outcome Measures (PROMs) for long-term health conditions, including, chronic kidney disease, eye conditions, HIV and others. These questionnaires include measures of well-being, quality of life, treatment satisfaction and symptoms. The quality of life and treatment satisfaction questionnaires are tailored to be suitable for specific, long-term conditions. For example, the ADDQoL quality-of-life measure for diabetes asks about the impact of diabetes on dietary freedom as well as other aspects of life known to be commonly impacted by diabetes and important for the quality of life of many individuals. The ADDQoL was instrumental in predicting and demonstrating the value of the diabetes management training programme, Dose Adjustment For Normal Eating (DAFNE), first published in the BMJ in 2002 and now in widespread use by people with type 1 diabetes. A further major advantage of Clare’s quality of life measures is that they share a common template, allowing for comparison of the impact of different conditions on quality of life using a common scoring metric.
Clare’s PROMs, linguistically validated in over 120 languages for use worldwide, have helped pharmaceutical companies and other researchers to evaluate treatments in terms of quality of life as well as quality of health and consider the well-being and treatment satisfaction of a range of patient populations.
Clare continues to contribute to the design and development of new PROMs, supervising the research led by other members of the team and participating, and training others, in patient interviews and design team meetings. She works closely with Alison to review and advise on protocols involving her PROMs and create trial-specific instructions for PROMs requiring them. She works closely with Anita on the updating of guidelines for use of the PROMs and related documentation. Together with other members of the team, Clare reviews manuscripts describing the use of her PROMs advising on clarifications to improve the value of the manuscripts and the accessibility of the PROMs.
With item libraries for Clare’s treatment satisfaction, quality of life and symptom questionnaires to expedite PROM design, the research team at HPR is well placed to create PROMs needed for conditions not already covered by existing questionnaires for adults, teenagers, children and parents of children with long-term conditions. Clare is happy to discuss, with pharmaceutical companies, other researchers and clinicians, the possibility of HPR designing new PROMs.