Aim Patient Reported Outcome and Experience Measures (PROMs and PREMs) offer potential for quality improvement within paediatrics. There are Measures for certain adult conditions, only recently emerging in paediatrics. They can inform NHS decision-making on several levels, including resource allocation, hospital management and patients’ decisions about their treatment. We identified the need for an Osteogenesis Imperfecta (OI) appropriate PROM/PREM tool and aimed to develop it within the Nationally Commissioned Highly Specialised OI Service in consultation with providers and service users.
Methods We reviewed PREM/PROM literature in other conditions, consulted an Occupational Psychologist specialising in healthcare outcome measures development to inform content, design structure and formatting of questions within the PREM/PROM tool. We held consultations with the four national OI centres’ multidisciplinary teams to generate staff opinions on service improvement and patient experience markers. We conducted focus groups with families to explore their important themes and later to provide feedback on the developed OI PREM/PROM tool. An eight week pilot was conducted in clinics at all four centres to check patient understanding of the tool, examine the data it could generate and test the process of administering the tool.
Results 22 parents and seven young people from the four OI centres took part in the pilot. Responses were reassuringly positive and revealed the OI PREM/PROM tool can highlight areas where the service is working well and can identify areas for teams to address. Parents and young people were very satisfied or satisfied with the input they received regarding receiving written and verbal OI-specific information, discussions about goals, treatment options and managing physical symptoms. Areas for improvement identified by parents and young people included developing independence, improving school staff understanding of OI, and concerns about transition. The tool proved feasible to use in the clinical setting.
Conclusion Ongoing use of the OI PREM/PROM tool has the potential to centrally place patient views and values in the National Highly Specialist Osteogenesis Imperfecta Service. It provides a useful way to identify areas for improvement, enabling multidisciplinary teams to develop action plans and to compare year-on-year trends of patient experience and outcomes.