What can we learn from the experiences and expectations of patients on growing waiting lists for planned care in the COVID-19 pandemic?

AIMS: COVID-19 has compounded a growing waiting list problem, with over 4.5 million patients now waiting for planned elective care in the UK. Views of patients on waiting lists are rarely considered in prioritization. Our primary aim was to understand how to support patients on waiting lists by hearing their experiences, concerns, and expectations. The secondary aim was to capture objective change in disability and coping mechanisms. METHODS: A minimum representative sample of 824 patients was required for quantitative analysis to provide a 3% margin of error. Sampling was stratified by body region (upper/lower limb, spine) and duration on the waiting list. Questionnaires were sent to a random sample of elective orthopaedic waiting list patients with their planned intervention paused due to COVID-19. Analyzed parameters included baseline health, change in physical/mental health status, challenges and coping strategies, preferences/concerns regarding treatment, and objective quality of life (EuroQol five-dimension questionnaire (EQ-5D), Generalized Anxiety Disorder 2-item scale (GAD-2)). Qualitative analysis was performed via the Normalization Process Theory. RESULTS: A total of 888 patients responded. Better health, pain, and mood scores were reported by upper limb patients. The longest waiters reported better health but poorer mood and anxiety scores. Overall, 82% had tried self-help measures to ease symptoms; 94% wished to proceed with their intervention; and 21% were prepared to tolerate deferral. Qualitative analysis highlighted the overall patient mood to be represented by the terms ‘understandable’, ‘frustrated’, ‘pain’, ‘disappointed’, and ‘not happy/depressed’. COVID-19-mandated health and safety measures and technology solutions were felt to be implemented well. However, patients struggled with access to doctors and pain management, quality of life (physical and psychosocial) deterioration, and delay updates. CONCLUSION: This is the largest study to hear the views of this ‘hidden’ cohort. Our findings are widely relevant to ensure provision of better ongoing support and communication, mostly within the constraints of current resources. In response, we developed a reproducible local action plan to address highlighted issues. Cite this article: Bone Jt Open 2021;2(8):583–593.