key: cord-0803429-13kv4q35 authors: Diskin, C.; Orkin, J.; Dharmaraj, B.; Agarwal, T.; Parmar, A.; Mc Naughton, K.; Cohen, E.; Sunderji, A.; Faraoni, D.; Fecteau, A.; Fischer, J.; Mahant, S.; Friedman, J. title: Disruptions in Care: Consequences of the COVID-19 Pandemic in a Children's Hospital date: 2021-12-05 journal: nan DOI: 10.1101/2021.12.02.21266778 sha: 528a81751eb3ea86968764f65c8682c06c63f31e doc_id: 803429 cord_uid: 13kv4q35 Background Public health restrictions are an essential strategy to prevent the spread of COVID-19; however, unintended consequences of these interventions may have led to significant delays, deferrals and disruptions in medical care. This study explores clinical cases where the care of children was perceived to have been negatively impacted as a result of public health measures and changes in healthcare delivery and access due to the COVID-19 pandemic. Methods This study used a qualitative multiple case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a childrens hospital. A quantitative analysis of overall hospital activity data during the study period was performed. Results The COVID-19 pandemic has resulted in significant change to hospital activity at our tertiary care hospital, including an initial reduction in Emergency Department attendance by 38% and an increase in ambulatory virtual care from 4% before COVID-19, to 67% in August, 2020. Two hundred and twelve clinicians reported a total of 116 unique cases. Themes including (1) timeliness of care, (2) disruption of patient-centered care, (3) new pressures in the provision of safe and efficient care and (4) inequity in the experience of the COVID-19 pandemic emerged, each impacting patients, their families and healthcare providers. Conclusion Being aware of the breadth of the impact of the COVID-19 pandemic across all of the identified themes is important to enable the delivery of timely, safe, high-quality, family-centred pediatric care moving forward. Public health restrictions are an essential strategy to prevent the spread of COVID-19; however, unintended consequences of these interventions may have led to significant delays, deferrals and disruptions in medical care. This study explores clinical cases where the care of children was perceived to have been negatively impacted as a result of public health measures and changes in healthcare delivery and access due to the COVID-19 pandemic. This study used a qualitative multiple case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a children's hospital. A quantitative analysis of overall hospital activity data during the study period was performed. The COVID-19 pandemic has resulted in significant change to hospital activity at our tertiary care hospital, including an initial reduction in Emergency Department attendance by 38% and an increase in ambulatory virtual care from 4% before COVID-19, to 67% in August, 2020. Two hundred and twelve clinicians reported a total of 116 unique cases. Themes including (1) timeliness of care, (2) disruption of patient-centered care, (3) new pressures in the provision of safe and efficient care and (4) inequity in the experience of the COVID-19 pandemic emerged, each impacting patients, their families and healthcare providers. Being aware of the breadth of the impact of the COVID-19 pandemic across all of the identified themes is important to enable the delivery of timely, safe, high-quality, family-centred pediatric care moving forward. This study demonstrates the breadth of its' impact on the delivery of timely, safe, equitable and patient and family centered care, highlighting considerations for paediatric providers as we move forward. Since the onset of the COVID-19 pandemic, much of society, including healthcare delivery, has changed. 1 In March 2020, healthcare services underwent a major reorganization, 2 with nonessential activity including in-person ambulatory activity and elective surgery curtailed, guided by a provincial directive. 3 Clinicians raised concerns regarding the potential impact on morbidity and mortality of patients experiencing illness during the pandemic. Delayed presentation to care, deferral of care, impact on cancer treatment and disruption of clinical pathways to accommodate COVID-19 have been described. 4, 5 Children have been affected by multiple consequences that have spanned their physical, social developmental and emotional wellbeing. 6, 7 Early data from Italy highlighted a sharp reduction in children presenting to acute care 6 and significant morbidity, including presumed preventable intensive care admissions due to children presenting late in their course of illness. 6, 8 Although important for reducing viral transmission, the potential risk of school closure and societal lockdown to children has led to a call for urgent monitoring and systematically collected data. 9 , 10, 11, We hypothesized that the COVID-19 pandemic and efforts undertaken in the hospital sector to mitigate the effects may have unintended secondary consequences. This study's primary objective is to describe courses of care for hospitalized children that were altered by the COVID-19 pandemic from the clinician's perspective. We planned to identify thematic similarities to inform clinical practice and explore the associated negative effects of health care and hospital policy changes associated with the COVID-19 pandemic. This mixed-methods study was performed at the Hospital for Sick Children, a 350-bed tertiarycare children's hospital in Toronto, Canada, and describes the experience between March and August 2020, which coincides with the first wave of the COVID-19 pandemic in Canada. 12 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint This prospective study involved a qualitative multiple case study design with descriptive thematic analysis of clinician-reported consequences of the COVID-19 pandemic on care provided at a children's hospital. Study data was collected and managed using the Research Electronic Data Capture (REDCap) platform. REDCap is a secure, web-based software platform designed to support data capture for research studies. 13, 14 A quantitative review of hospital data was also performed to understand and contextualize patterns of clinical activity changes during the study period. The study protocol was reviewed and approved by the Hospital for Sick Children's Research Ethics Board (#1000070386). A brief interim report, completed mid-way through the study, was previously published. 15 We disseminated early results in real-time to inform healthcare leaders and decision-makers about the breadth of the impact associated with the COVID-19 pandemic. (1) Case series Cases were identified in two ways in order to facilitate comprehensive capture; 1) a prospective bi-weekly email survey, and 2) monthly review of clinical cases submitted for morbidity and mortality (M&M) review hospital-wide. The review of cases submitted as part of the M&M process was intended to enhance the comprehensiveness of data. A bi-weekly survey was sent to all physicians (including trainees), dentists and advanced practice nurses (n=1727) from May 25 to August 25, 2020. The survey included demographic information as well as case identification questions. They were asked to identify any patients they perceived to have experienced a suboptimal quality of care or health outcome related to changes that had occurred as a result of the COVID-19 pandemic, including their perception of the impact (Supplementary appendix - Table 1 ). Individuals could complete the survey on more than one occasion if they experienced other cases that met the criteria. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint Two reviewers considered written reports of hospital-wide morbidity and mortality (M+M) meetings until December 31, 2020, to identify any additional cases that listed the COVID-19 pandemic as contributing to the reported morbidity. New cases that were identified within the M+M reporting structure (i.e., those not already identified by clinicians) were included in the same database as those identified by the clinician-survey and subsequent case study analysis. Analysis followed a qualitative case series methodology using a narrative synthesis approach to determine similarities and associated themes. 16 Data were extracted from the hospital record for all reported clinical cases (Supplementary appendix - Table 2 ) focussing on the morbidity experienced. Three independent research team members (TA, CD and JO) undertook the thematic analysis. This involved (1) data familiarization, (2) data coding, (3) consideration of themes, (4) revision of themes, and (5) analysis of individual themes. 17 A pattern that emerged from the dataset as key to understanding the study question was identified as a theme. 17 Several overarching themes emerged, and data were grouped into clusters to characterize and situate the data. 17 Themes were reviewed and defined such that the analytic narrative and data extracts are weaved together and contextualized within real-life context 16 , within the existing literature. 17 When reviewers disagreed, cases were discussed including a review of objective evidence, until a consensus was reached. Some cases reflected multiple themes. Using the institutions' decision support analytics, hospital activity data was obtained to understand changes in clinical care activity, including presentations to the Emergency Department (ED), hospital admissions, surgeries, and radiological tests. Hospital activity data was compared between March-August 2019 to March-August 2020. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint Two hundred and twelve clinicians from all hospital departments (Pediatrics, Perioperative Services, Diagnostic Imaging, Psychiatry and Laboratory Medicine) completed at least one survey during the study period (Table 1) . Twenty clinical sub-specialties within the Department of Pediatrics and 10 in Perioperative Services were represented (Supplementary appendix - Table 3 ). One hundred and sixteen cases were reported (some respondents completed the survey and did not report a case). Four cases were previously reported, and nine cases did not have sufficient detail to guide a case review. One case reported as a delayed acute presentation was excluded, as on review, symptoms were present for less than 24 hours. A review of M&M data identified 3 cases where the pandemic was listed as a contributory factor, two of which were already reported by survey respondents. Several broad themes emerged, including (1) timeliness of care, (2) disruption of patient- Clinicians reported parents describing deferral and delay in accessing acute medical care because of concerns of COVID-19 exposure. For example, a clinician reported a perceived delay in presentation due to family reluctance to attend healthcare in the care of an adolescent later . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint diagnosed with Burkitt's lymphoma presenting with a 5-week-history of dyspnea and dysphagia. Parents also rescheduled planned care, including surgical procedures and ambulatory care, due to fear of exposure to COVID-19. Clinicians highlighted that the deferral of scheduled clinical activity was associated with consequences. Examples ranged from the inability to remove port-acaths quickly, resulting in a perceived increased risk of central line-associated bloodstream infections, to a child's loss of motor skills and increased pain while awaiting orthopedic intervention for hip subluxation. Further, cases reported challenges beyond the hospital, including access to community services. Rehabilitation services, including access to physiotherapy and occupational therapy, were reduced. Also, concerns regarding community services such as the newborn hearing screening program being suspended, leading to concerns regarding potential harm. Clinicians described how families adapted their decision-making, e.g., when to seek medical care. Some decided to wait based on their ability to reach their primary care provider. Clinicians also described their perception of increased caregiver burden related to deferred interventions such as orthopedic surgical care whereby children/youth experienced increasing pain necessitating additional services including referrals to the chronic pain service. In addition to providing clinical care and supporting patients and families to navigate the healthcare system during a pandemic, clinicians adjusted their decision-making during a time of enforced restricted activity, e.g., reviewing and re-prioritizing previously planned interventions including diagnostic imaging investigations, interventional radiology procedures and surgeries. They reported distress prioritizing cases in ways they never had to do before. Clinicians managed the ramp-up of clinical activity, e.g., resumption of surgical activity, with many additional restrictions and polices in place such as infection control procedures and/or enhanced environmental decontamination procedures, contributing to a stressful experience. (2) Disruption to the delivery of patient and family-centered care (18 cases) . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint Eighteen cases described the impact on the hospital or clinicians' ability to provide patient and family-centered care; 9 related directly to the child's experience and 9 to the family experience. As part of routine screening for COVID-19, multiple nasopharyngeal swab tests mandated by hospital policy (e.g., screening before a procedure or on admission) was a reported cause of distress to patients. Some children described by survey respondents had four swabs performed in less than three weeks. Visitor policy restrictions were put in place at the hospital to limit presence and decrease risk of infectious spread; and clinicians reported related challenges e.g., at the end of a child's life, when siblings and extended family were not present. Clinicians highlighted the broader impact of limiting family presence on the entire family. The lack of two caregivers was often described as causing additional distress amongst both children and parents alike. Conversations involving the disclosure of important information, e.g., providing a new serious diagnosis, often involved one parent present and another joining remotely, causing distress amongst the family as reported by clinicians. Also, the family policy restriction limited family caregivers to only one caregiver at the bedside, which for children with complex needs was sometimes inadequate. Lastly, the usual supports, including parental overnight accommodation, were closed, and alternatives, e.g., hotels, were expensive, which clinicians reported increased stress and burden on families. Clinicians described how they were required to enforce policies to miminize infectious spread that conflicted with their ability to provide optimal patient and family-centered care. An example of this was the enforcement of the reduced family presence at the bedside policy. Clinicians described experiencing moral distress when caring for a child at end of life where family presence, including siblings, remained limited. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint 1 0 Impact on children Clinicians described the impact of school closures on children, specifically those who require specialized services within the school setting, such as those with developmental disabilities requiring specialized therapy. For example, one case reported a young person with autism presenting with increased anxiety and skill regression perceived to be associated with loss of resources due to school closure, resulting in increased medication and additional support required for the family. Another report described the challenges a family experienced supporting their child with autism participate in virtual learning, ultimately opting for home-schooling, thereby creating additional stress in the home. Clinicians reported disruption to services designed to ensure child wellbeing, e.g., child protection services were limited in their ability to complete in-home visits for child protection concerns on account of inadequate personal protective equipment (PPE) availability. The provision of virtual care highlighted various issues relating to equity explored when discussing safe and effective care (next section). Clinicians reported missed or cancelled appointments as parents, especially those who were essential workers unable to work from home, struggled to find adequate support due to the closure of daycare and/or school and decreased availability of family members to care for siblings because of social distancing measures. Also, the hospital closed its child-minding services, including supervised space for siblings to play while their family attends an appointment. Some families opted to defer appointments, investigations or treatment, including essential services and treatments such as chemotherapy for ongoing cancer care. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) 1 1 Clinicians described their frustration and stress due to the limited ability to respond to the inequities they witnessed while trying to help families navigate diminished supports, e.g., access to low-cost accommodation during their child's prolonged hospital stay remote from their home. The safe and effective care of patients was impacted by the previously described themes, including timeliness of care and equity. Additional challenges to providing effective care are illustrated by a case that reflected the difficulties in establishing a therapeutic relationship through virtual care with a young person with severe anxiety. Another case described a child who required admission to the hospital to complete imaging investigations for a headache. This would typically be completed in the Emergency Department; however, admission was required as COVID-19 test results were necessary before the provision of general anesthesia. Clinicians reported increased challenges related to complex discharge planning. For example, discharge home from hospital for a child with medical complexity and multiple technology dependencies (ventilator-dependent, tracheostomy, enterostomy feeds) was delayed due to lack of community homecare supports. This was coupled with parental hesitancy to receive home care services related to the risk of COVID-19 exposure. Ten cases reported were related to the provision of virtual care, with staff and families experiencing challenges relating to communication, e.g., providing laboratory requisitions was more challenging with many families not owning a printer. Staff described that physical signs were missed, e.g., pleural effusion, contributing to delay in arriving at correct diagnosis and treatment provision. In addition, examples of communication challenges related to not being face-to-face contributing to error, e.g., incorrect dosage of medication being taken, were reported. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint Clinicians reported difficulties in adapting to care provision in an environment of rapid change with new, frequently updated policies. The requirement for the use of PPE, including a mask and eye protection for all patient encounters was reported as a distraction. One case reported fogging of eyewear to have contributed to the incorrect reading of a medication pump and additional communication challenges were reported including the reduced opportunity to read non-verbal cues. One case reported that the absence of team members on in-patient ward rounds, a result of efforts to reduce gatherings on the ward, impacted team performance, e.g., the pharmacist's absence on the ward round reduced the opportunity to identify medication-related errors. A clinician described increased diagnostic anchoring with a tendency toward COVID-19 related diagnoses. For example, a child presenting with extremity changes, swelling and redness of the right foot was misdiagnosed as having 'COVID toes,' and the correct diagnosis of arterial thrombus was initially missed, compounded by the virtual nature of the physical examination. Attendance in the ED ( From April to August 2020, there was a 17% reduction in surgeries and 33% reduction in outpatient radiological investigations compared with the same period in 2019. The number of children awaiting surgical intervention in August 2020 had increased by 31% since the start of the COVID-19 pandemic. The pandemic triggered an increase in virtual care, particularly in ambulatory care. Virtual visits increased from 4% of all ambulatory visits before COVID-19, to 67% of all ambulatory visits in August, 2020. The study results explore the broad impact of the COVID-19 pandemic on pediatric hospital care from the perspective of a large group of clinicians. Delays in presentation for care during the . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint pandemic, and the potential impact on morbidity, including hospitalization and financial cost, have been previously described. 18, 19, 20 Our hospital data confirm a drop in ED attendance as well as reductions in surgical and ambulatory activity, and a large switch to virtual care in the ambulatory setting. Our results illustrate that the impact of the COVID-19 pandemic extend beyond simply access to timely care to much broader health quality domains including patientcenteredness, equity and safety. Our findings highlight three key areas of concern specifically relating to patient and family-centered care, the expansion of virtual care and care of vulnerable populations. Family-centered care, a standard of care in many institutions caring for children, involves taking a partnered healthcare decision-making approach. 21 The provision of patient and family-centered care during the pandemic was challenged. The core tenant of shared-decision making was often limited due to policies in place including family presence at the bedside. 22 Particular situations, e.g. when providing a new diagnosis require careful consideration as family presence can support parental coping and mitigate decisional conflict 23, 24 . Hospitals need to continue to learn from their growing experience of providing healthcare during a pandemic and balance policies to align with the best care, including family-centeredness, an essential contributor to patient and family wellbeing. 25 Innovative interventions could support healthcare providers to engage with families, e.g. using technology to support sibling involvement at the bedside. Clinicians reported the challenges they encountered as they adapted to virtual care delivery in a rapidly changing environment, echoing previous experience that emphasized integrating virtual care with existing systems. 26 They were often unable to provide care as they previously did, e.g., not completing a physical examination or reduced ability to read non-verbal communication cues. This highlights that the delivery of virtual care requires a particular skillset on the part of the healthcare provider including decision-making about the appropriateness of virtual care. 27 The expansion of virtual care is associated with benefit, possibly enhancing family and patientcentered care delivery. For example, virtual ambulatory care can reduce the frequency with which families have to travel and attend hospital, reducing the need for caregivers to take time off work and associated costs. Coordinating the involvement of multiple professionals in a clinical interaction is potentially easier, with many able to join virtually. As a potentially valuable means to support patient-centered care, virtual care needs to be championed. 26 . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprint this version posted December 5, 2021. ; https://doi.org/10.1101/2021.12.02.21266778 doi: medRxiv preprint However, as healthcare providers, we need to be aware that inequities in digital health exist alongside other factors contributing to poorer health outcomes such as poverty. Lack of access to technology or the expertise to navigate it can contribute to health inequities associated with increased age, lower level of educational attainment and lower socio-economic status. 28 Advances in virtual care need to be accompanied by a concerted effort to prevent disparities in care for patients without access to internet or devices, 29 including alternatives for families unable to attend virtual appointments. Our findings support previously published commentaries and research studies, highlighting subgroups of children as particularly vulnerable, including those with medical complexity, developmental disabilities and mental health diagnoses. [30] [31] [32] [33] As families continue to provide care to their children with additional needs during the pandemic, 34 we need to consider children who are particularly vulnerable to its impact, e.g., those who receive healthcare and therapy via the educational system. Clinicians must continue to advocate for paid sick leave and other policies which support and facilitate family caregiver's interactions with healthcare. Clinicians reported increasing moral distress and burnout throughout the COVID-19 pandemic. 35 Cases reported highlighted the challenges clinicians face as witnesses of the inequity within society and healthcare. In addition, clinicians themselves are also likely experiencing similar issues such as reduced childcare availability, school closures, and sick loved ones. It is important to remind leaders and managers in healthcare to be mindful of the burden that healthcare professionals are currently bearing, particularly as the pandemic stretches on. Understanding the link between clinicians, family and patient experience, the role of societal and institutional policies, and actions undertaken at various levels in response to lived experience and policies is an important area of study, both to support healthcare workers and deliver family and patient-centered care. This study was performed in a single tertiary-care pediatric academic centre, limiting its generalizability. We recognize that the approach taken by hospitals to the COVID-19 pandemic may vary. 36 The case finding methodology used was not real-time and cannot provide a denominator or frequency for events. However, a thorough review of M&M records uncovered only 1 additional case, suggesting that the frequency of survey distribution and its prospective . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) 1 5 nature might mitigate this limitation. The study is clinician-centric, but involved only doctors and advanced practice nurses. A broader representation of health care providers including bedside nurses and allied health professionals would result in a richer understanding of the disruption in care related to the COVID-19 pandemic. The involvement of patients and family caregivers is required to enhance our understanding 37 , as the challenges faced by patients due to delays might be overlooked. More subtle manifestations of inequity may have been overlooked as the study did not examine the various contributing factors to the individual experience of the pandemic. Lastly, the results reflect the experience of frontline clinicians who chose to respond and are therefore subject to their bias. To truly understand the parent and child perspective, we plan to further engage with families and describe their experiences as a future step in this work. The broad consequences of health system changes as a result of the COVID-19 pandemic have impacted patients, families, healthcare providers and the healthcare system as a whole. Understanding the breadth of this impact is essential as we strive to deliver safe, high-quality, family-centered pediatric care in this new era. As the pandemic continues, we need to carefully consider how best to provide elective and ambulatory care, including surgery, in this era of infection control. Particular attention should be paid to ensuring timely access to safe care for children with special needs and families from disadvantaged settings lacking in resources, as well as the impact of the COVID-19 pandemic on the frontline clinician. . 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