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

Abstract

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):573–583.

The Oxford Knee Score is a reliable predictor of patients in a health state worse than death and awaiting total knee arthroplasty

“…A recent study by Kulkarni et al (2021) [34] highlighted the plight of those on NHS waiting lists, describing their experiences. They found that patients felt their physical and mental health had deteriorated, and that they had struggled to access doctors and obtain help with their pain management.…”

The health-related quality of life of patients with musculoskeletal disorders after the COVID-19 pandemic

“…Furthermore, patients with musculoskeletal disorders could experience delays in timely access to the hospital owing to fear of exposure to the infection, or could hesitate before visiting the hospital in order to prevent spreading the infection. [ 3 ]…”

“…Furthermore, patients with musculoskeletal disorders could experience delays in timely access to the hospital owing to fear of exposure to the infection, or could hesitate before visiting the hospital in order to prevent spreading the infection. [3] Hence, we aimed to determine whether the current situation in which fundamental daily activity is limited owing to the COVID-19 pandemic could negatively affect the health-related QOL (HRQOL), especially the mental health, of patients with musculoskeletal disorders. We, therefore, sought (1) to assess the changes in the HRQOL of patients with musculoskeletal disorders after the first and second Level of evidence: Level IV waves of the pandemic, and (2) to assess the relationship between the patient's reported changes in several daily life activities and in the HRQOL, to discover factors to prevent and/or improve HRQOL deterioration.…”

Significant deterioration in quality of life and increased frailty in patients waiting more than six months for total hip or knee arthroplasty

“…This was for ease of completion of the questionnaire, and there was no mechanism in place to reassesspatientsradiologically.Collectingtheseparameterswould haveallowedfurtheranalysistoassessmorespecificallyifthe joint-specificfunctionhadalsodeterioratedinassociationwith theradiologicalchanges,orwhetherthedeteriorationwasdue totheprogressionofothercomorbidities.Similarly,assessing associatedpaininotherjointsandtheeffectofothercomorbid-itiesonHRQoLwerenotaccountedfor.Theothermajorfactor which was not accounted for was the effect of the prolonged waiting for surgery on the patient's mood, which has been showntobelowerinthosewhowaitalongtimeforsurgery, who also have increased anxiety. 46 This may have adversely influenced the EQ-5D used to assess HRQoL, as part of this measure assesses "anxiety and depression". 24 We used the 3L version of the EQ-5D, however the 5L offers five levels of responseforeachquestionandhasbeenshowntohavegreater validity.…”

“…The other major factor which was not accounted for was the effect of the prolonged waiting for surgery on the patient’s mood, which has been shown to be lower in those who wait a long time for surgery, who also have increased anxiety. 46 This may have adversely influenced the EQ-5D used to assess HRQoL, as part of this measure assesses “anxiety and depression”. 24 We used the 3L version of the EQ-5D, however the 5L offers five levels of response for each question and has been shown to have greater validity.…”