How parents feel when their child’s operation is delayed – Their experience during the pandemic

07 Oct 2021

By Alpesh Kothari1, John Jeffery2, Rachel Buckingham1, Andrew Wainwright1 and Tim Theologis1
1Consultant Paediatric Orthopaedic Surgeon, Department of Paediatric Orthopaedics, Oxford University Hospitals NHS Foundation Trust.
2Specialist Trainee, Trauma and Orthopaedic Surgery, Oxford University Hospitals NHS Foundation Trust.

Corresponding author e-mail: alpesh.kothari@ndorms.ox.ac.uk

Published 07 October 2021

COVID-19 has had a profound effect on healthcare globally. In response to this existential threat, hospitals have had to reduce the provision of elective surgery1. In one estimate, over 28 million elective procedures were postponed globally at the peak of the COVID-19 crisis1. As such, waiting lists for elective surgery are at an unprecedented high.

Elective orthopaedic surgery comprises a large proportion of the postponed and delayed surgery, as the majority of listed cases would be regarded as low urgency1. Prolonged time on a waiting list is not benign, for example waiting for hip arthroplasty can be perceived as being worse than death2. The FSSA have devised a recovery prioritisation matrix for lower urgency cases to take on board physical and psychosocial factors as well as time on the waiting list. Whilst this is useful, providers alone may not have enough information to implement this matrix, without the perspectives and experiences of the patient.

We conducted a survey to gain an insight from the parents of children on a paediatric orthopaedic waiting list at a tertiary referral centre at two time-points during the COVID-19 pandemic. The key areas of interest were:

1.   Physical, psychological health and function of children on the waiting list.

2.   Access to physiotherapy services during the pandemic.

3.  Longitudinal evaluation of measured parameters over the course of the pandemic.

The survey focussed on a population served by a paediatric consultant unit at a tertiary referral centre with a local catchment area of approximately 600,000 people, along with regional referrals from across the South of England.

As no formally validated questionnaires exist for such a survey, a questionnaire based on that used by Miller et al.  was constructed to capture parents’ perspectives of being on the waiting list3.

The first survey was undertaken in July 2020 and a link to the survey was sent electronically via email from a secure NHS server to all parents of children fulfilling the selection criteria. The second survey was undertaken in February 2021 and was sent to all parents of children fulfilling the selection criteria by either email or secure text message. There was good response rates with 69% on the first and 65% on the follow-up survey.

Respondents to the first survey suggested that whilst on the waiting list there was a deterioration in physical health in over half of children (58%). Pain was experienced sometimes or more frequently in 79% of children. A similar proportion of children experienced difficulties sometimes or more frequently in participating in recreational activities (73%), and slightly less with respect to non-recreational physical activities (47%).

Waiting was also felt to have caused worsening emotional stress and anxiety in over three-quarters of children and almost two-thirds of adults. The results of the second survey in general were consistent and stable for these domains when compared to the first survey.

At the time of the first survey 71% of respondents reported that since the beginning of the pandemic they had not received any physiotherapy, with only 14% receiving the normal frequency of physiotherapy. An improvement was noted in February 2021 with slightly over half of individuals having some physiotherapy provision. It was also noted that the model of providing physiotherapy had changed from a tendency for either face to face or virtual appointments to a blended provision comprising face to face and virtual appointments.

At the time of the first survey, 11% of respondents had been on the waiting list for over a year, and this rose to 29% at the time of the second survey. In terms of parents’ belief about the urgency of surgery, the median value at both time points was 7 out of 10, with 10 being most urgent, and 1 being least urgent.

The main focus of the additional comments in July 2020 was on the uncertainty around restarting elective surgery and the desire for more regular communication and updates from the unit. In February 2021, whilst there were still some concerns about insufficient communication from the department, the focus was the ongoing reduction in access to physiotherapy services.

An important and concerning finding of this study was that whilst on the waiting list over half of parents felt that the physical health of their child had deteriorated as a result of their orthopaedic condition. As well as physical deterioration, there was a psychological effect on both children and parents in over two-thirds of cases. These findings echo those observed by Miller et al. in their evaluation of children awaiting paediatric general surgery3.

A number of additional comments raised concerns about the perceived paucity of communication between the unit and parents. Optimising communication has been highlighted by other groups, and in response to these comments we have instituted routine update circulars to all children on our waiting list4. It is hoped that this will allay some of the added emotional stress and anxiety.

An almost three-fold increase in the proportion of children waiting over a year for their surgery was observed between the two surveys.  Delays in surgical intervention can also increase the complexity of surgery required and as such the complication profile. This raises the concept of acceptable wait times. This has been investigated in adult arthroplasty surgery, and adolescent idiopathic scoliosis, but not in other paediatric orthopaedic surgical interventions, and is an avenue for future investigation. However, irrespective of what the clinician feels is acceptable; with a median value of 7/10 parents evidently thought that their child’s surgery was reasonably urgent.

In the context of longer waiting times for surgery, physiotherapy may serve to optimise function and pain for individuals making the wait more tolerable. Prehabilitation may also help post-operative recovery and outcomes. Indeed, in the context of orthopaedic surgery the BOA have released a statement to waiting-list patients with links to the Chartered Society of Physiotherapists to help manage bone, joint or muscle pain. The results of this study suggest that there has been insufficient provision of physiotherapy during the pandemic but we observed a slightly larger proportion of children that were receiving physiotherapy at the time of the second survey.

Waiting for paediatric orthopaedic surgery during the COVID-19 pandemic appears to have had an adverse effect on the physical functioning of some children and caused worsening emotional stress and anxiety to patient and parent alike. Whilst a delay in surgery may be inevitable for some, it is important for children’s well-being to have a clear line of communication with the department and timely, sufficient access to physiotherapy.

Without formally evaluating children’s and parents’ perspectives it is impossible to equitably stratify and prioritise them for surgery, and we would recommend this approach across all surgical specialities. Whilst the last year has had an impact of seismic proportion on elective surgery, lessons learnt now will also be beneficial for future waiting-list management strategies.

References

1.   Negopdiev D, Collaborative C, Hoste E. Elective surgery cancellations due to the COVID-19 pandemic: global predictive modelling to inform surgical recovery plans. British Journal of Surgery. 2020;107(11):1440-9.

2.   Scott CEH, MacDonald DJ, Howie CR. 'Worse than death' and waiting for a joint arthroplasty. Bone Joint J. 2019;101-B(8):941-50.

3.   Miller GG. Waiting for an operation: parents' perspectives. Canadian journal of surgery. 2004;47(3):179.

4.   Keshet D, Bernstein M, Dahan-Oliel N, Ouellet J, Pauyo T, Rabau O, et al. Management of common elective paediatric orthopaedic conditions during the COVID-19 pandemic: the Montreal experience. Journal of Children's Orthopaedics. 2020;14(3):161-6.

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