Follow-up needs after paediatric critical care: A survey

Abstract

INTRODUCTION

Admission to a paediatric intensive care unit (PICU) carries significant burden for both a child and their caregivers. A proportion of paediatric patients discharged from a PICU suffer from persistent impairments across physical, neurocognitive and psychosocial domains (1–3). Emergence and persistence of a combination of these comorbidities beyond hospitalization are well described in intensive care unit (ICU) survivors and commonly referenced as post-intensive care syndrome in paediatrics (PICS-p) (4), a framework that acknowledges the importance of the child’s baseline status, psychosocial development, social supports and trajectories of health recovery (5).

There is emerging evidence in the adult critical care literature outlining significant benefits of outpatient follow-up for critical care survivors, including reduced depression and improved patient satisfaction (6,7). A 2019 systematic review on the effects of post-ICU follow-up demonstrated improvements in mental-health-related quality of life in the short term, and reduced PTSD symptoms in the medium term (8). Within Canada, a number of outpatient clinics have been piloted in the past decade within adult critical care centres (9), but a paucity of paediatric clinics persists (10–14).

There is a national (10) and international (15) drive to establish PICU follow-up programs (PFUP) as a method of providing comprehensive, specialized follow-up for a unique set of sequelae that require better description and understanding. PFUPs may act as a conduit for appropriate onward referral within a tertiary system, provide prompt access to needed services and may afford a space to probe patient and caregiver understanding as well as their health literacy (7). Yet gaps remain in our knowledge of current follow-up needs (perceived and actual) and healthcare usage by PICU survivors after discharge in the Canadian healthcare landscape. This survey aimed to better understand whether there is an unmet need for PFUPs among PICU survivors. Additionally, this survey aimed to describe PICU survivors’ existing healthcare usage, primary care and specialist follow-up, and return to school and work for patients and their caregivers, respectively.

METHODS

This is a cross-sectional survey of patients surviving their PICU admission at the Hospital for Sick Children (HSC), a 22-bed, quaternary care paediatric referral centre in Toronto, Ontario, Canada. We approached patients and their caregivers for consent to receive an invitation to complete an anonymous electronic survey, over a period of 3 weeks in November and December of 2022, and 2 weeks in May of 2023. Patients admitted for greater than 24 hours were considered eligible and constituted the target population. Patients who were not expected to survive were not approached, otherwise attempts at approach were made for all other patients admitted during those time periods. A link to the anonymous survey was sent by e-mail to the patient’s caregiver three months after PICU discharge. One e-mail reminder was sent out seven days after the initial electronic survey was sent. The survey was administered through Research Electronic Data Capture (REDCap) and responses were anonymous. Re-identification of caregivers or patients was not possible. Purposive sampling was used, and we chose a sample size of convenience to inform a local Quality Improvement project using survey responses to understand local needs and to use survey results to design an institutional follow-up program. The survey domains of interest were healthcare access after PICU discharge, return to work and school after PICU discharge, and caregiver interest in a PICU follow-up program. We used literature review, expert opinion and a multidisciplinary team for item generation within the domains of interest. Item reduction was performed by members of the team for each domain to eliminate redundant questions. Pilot testing was performed by team members and parent representatives. Clinical sensibility and face validity were assessed with hospital Quality Improvement leaders, team members and parent representatives, to ensure the survey questions were easily understood and to ensure survey content mapped domains of interest. In addition to English, the electronic survey was translated into the two other most commonly spoken languages among patients at the hospital. The survey was approved by Quality Improvement Ethics Review at HSC (QIP-2023-09-08T09-39-49) and the Revised Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0) guidelines were followed. We used descriptive statistics to describe patient and caregiver characteristics and responses, and Likert scale responses were summarized. RStudio was used for statistical analysis.

RESULTS

A total of 162 patients were admitted to the PICU during the 5-week recruitment period who had a length of stay greater than 24 hours. Of these, 14 (9%) patients died, one declined to participate and seven (4%) were unable to be approached for consent. Of the 139 surveys sent, 62 (45%) completed surveys were received from caregivers of PICU survivors (Figure 1).

Figure 1.

Survey respondent flowchart

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Nearly half of the patients were less than 12 months of age at PICU admission (Table 1). Prior to their PICU admission, 73% of surveyed children were not followed by any hospital specialists. Almost all had a primary care provider and two-thirds did not take any regular medications. Acute lower respiratory tract infection was the most commonly reported admission diagnosis, two-thirds were intubated and 45% had a length of stay greater than 7 days. Primary care providers had been made aware of the child’s PICU admission in 85% of cases. Two patients remained hospital inpatients at the time of completing the survey.

Three months after PICU discharge, 39% of children had a new medication, 19% had revisited the Emergency Department and 23% had been readmitted to hospital (Table 2). Following discharge from the hospital, 44% had a scheduled follow-up within 1 week of hospital discharge and less than 10% had no organized follow-up. After discharge, 39% had follow-up scheduled with a hospital specialist and 53% had planned follow-up with a new allied health professional.

Three months after PICU discharge, 77% of caregivers reported feeling well supported. When asked whether the respondent believed a PICU follow-up program would be beneficial for their child, 59% agreed or strongly agreed, and 84% agreed or strongly agreed that they would attend an in-person PICU follow-up appointment (Figure 2). These data are consistent among previously healthy children, as well as those with significant prior medical histories (Supplementary Table 1). Seven (70%) of the caregivers of children with follow-up in Complex Care and 11 (65%) of the caregivers whose children had follow-up with specialists agreed or strongly agreed that a PICU follow-up program would also be beneficial for their child. Among caregivers who reported feeling unsupported after discharge, six (75%) strongly agreed that follow-up would be beneficial and all caregivers who had unaddressed concerns were strongly supportive of follow-up.

Figure 2.

Likert scale responses for perceived follow-up needs

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Of patients who attended school or daycare, a third had not returned within 3 months of PICU discharge, 46% had missed more than 1 month of school or daycare and 23% of those children who had returned to school required a specialized education plan (Table 3). Among employed caregivers, 21% (12/58) were yet to return to work 3 months after discharge, and 47% had missed more than 2 weeks of employment.

DISCUSSION

This survey aimed to better understand survivorship experiences and follow-up needs by asking families directly and anonymously about their experiences, healthcare use and perceived follow-up requirements. This survey has three main findings. First, the caregivers of many PICU patients responded favourably when asked whether follow-up in some form after a PICU admission would be beneficial to their child, despite 77% already feeling well supported, suggesting there may be a gap in current post-PICU management. Second, survivors of critical illness have significant healthcare use after discharge. And third, significant impacts on both school and employment absenteeism follow a child’s PICU admission, which needs to be carefully considered when designing follow-up programs.

In this survey, we demonstrated an interest in attendance at a PICU follow-up program amongst 84% of caregivers, including caregivers of previously healthy children, and children with existing medical conditions and pre-established follow-up. This interest in PICU follow-up, despite 77% of caregivers reporting feeling well supported and many reporting improved or stable health status, may be suggestive of gaps in existing follow-up or may highlight a desire to be reacquainted with members of the PICU team (Supplementary Table 2). Building from the extensive and successful neonatal follow-up programs, there are a few Canadian groups that have begun reporting on survivors of paediatric critical illness (10–12), and they have described a variety of psychosocial impairments and developmental delays present at follow-up, and acknowledged their program facilitated more specific detection of issues such as sleep and feeding issues, breathing difficulties and learning challenges (10). In the adult critical care literature, a 2019 systematic review and meta-analysis collating 26 studies, including 16 randomized trials, investigated the effects of post-ICU follow-up on over 35,000 patients (8). They identified improvements in depression and mental-health-related quality-of-life scores in the short term, and improvements in post-traumatic stress disorder (PTSD) symptoms in the medium term, amongst adult ICU survivors (8). However, findings from a recent randomized control study on multidisciplinary follow-up after ICU provide conflicting findings on the benefits among adult ICU survivors (16). Ultimately, our survey’s finding of interest in PICU follow-up warrants further investigation to properly respond to clinical needs or gaps in care without redundancy.

Ongoing reliance on the healthcare system was prevalent within this cohort, with 39% having organized follow-up with a hospital specialist and 53% having follow-up with at least one new allied health specialist, within 3 months of PICU discharge. The typical patient within this survey was one who was previously healthy (73% not known to a hospital specialist prior to admission, 61% not on regular medications, 85% first PICU admission), young (45% less than 12 months old), admitted with a new acute illness (29% acute lower respiratory tract infection, 10% sepsis/septic shock and meningitis/encephalitis), and intubated (61%) during their admission. Our data align with the current literature highlighting the healthcare dependency patients have after critical illness. Resource utilization following an admission to the ICU has been well described in the adult literature (17–20), with subsets of paediatric populations also being reported (21). Yagiela et al. reported healthcare utilization in a cohort of 163 patients, following discharge from PICU having been admitted with respiratory failure. At 2 years, over three-quarters required new regular medications, over a quarter had new home care equipment and over half had ongoing abnormalities in functional status (21). A growing number of patients with increasing healthcare needs puts added pressure on healthcare resource allocation and balancing the allocation of PICU team members between inpatient and potentially outpatient care adds further complexities to an already stretched system. A PICU follow-up program may enable early recognition of a subset of patients and facilitate more efficient and cost-effective outpatient-focused care coordination through community programs or family physicians. Of course, many specialists and multidisciplinary team members outside of the ICU could be well suited to lead a specific post-PICU follow-up program. Our survey focused on patient and caregiver perspectives on a PICU-led follow-up program; however, there is scope to explore other follow-up designs, and the inclusion of other paediatric specialists who may be well suited to providing follow-up care to this patient population.

The educational impact of PICU admission has been studied (22–26), and these data are consistent with the growing evidence that children admitted to the PICU may require additional care coordination and school-based interventions. In this survey, 23% of those children who had returned to school within 3 months following their discharge required a new specialized education plan. PFUP may provide a welcomed space to identify deficits necessitating escalation to thorough psychosocial and cognitive evaluations and support services, and linkage with school liaison services may also provide a beneficial conduit for accessing earlier screening for additional educational resources. When facilitating PFUP for patients and their families, awareness of the burden on families for yet further hospital follow-up is important to consider. Ducharme-Crevier et al. described in-person consultations as being better placed to comprehend the true burden faced by families (10); however, this should be balanced against further missed employment and school absenteeism with in-person visits. The optimal timing of PFUP consultations is also yet to be determined, with current programs in Canada having a first visit ranging from 2 to 6 months post-PICU discharge (9,10). This population was surveyed 3 months following PICU discharge, with 21% of caregivers and 34% of school-aged children not having returned to work and school, respectively, prompting careful consideration for the appropriate timing of follow-up, particularly in relation to a patient and family’s return to ‘normality’.

A number of strengths exist within this survey. First, caregivers were provided with an opportunity to directly and anonymously describe their experiences with medical follow-up and to describe their interest in a specific follow-up program. Confirming that efforts to establish follow-up are both welcome and needed is important. Second, the patient characteristics of those who responded are generally representative of expected heterogeneity in admission diagnoses and medical complexity among children admitted to intensive care. Third, recruitment was performed across two separate seasons to minimize selection bias.

There are five main limitations to the survey. First, the proportion of consented caregivers who were lost to follow-up introduced selection bias. It is also important to acknowledge that caregivers who had not returned to work may have had more time to complete the survey. Second, as with any survey, recall bias may have impacted the responses provided. Third, explanations of responses were not explored in this survey, providing scope for future follow-up work. Fourth, the generalizability of the survey findings may be geographically limited given variability in healthcare insurance and delivery across countries, as well as significant variability in access to primary care physicians across Canada. Additionally, the timing of this survey, during and immediately after the viral respiratory surge, in addition to the preceding pandemic years, may have influenced the survey responses. Fifth, the survey did not seek to describe what the ‘ideal’ PFUP would look like, and what structure patients and caregivers envisaged would be of most benefit. Despite these limitations, this survey provides important local data identifying healthcare reliance and school/work absenteeism following PICU admission reflective of what is described in survivorship literature.

CONCLUSIONS

This survey demonstrates an ongoing use of healthcare services following discharge from the PICU and more than half of PICU survivor caregivers are supportive of PICU follow-up. The potential financial burden associated with delays in caregivers’ return to work and the number of children requiring specialized education plans highlight the importance of supporting this vulnerable population, and timing and tailoring follow-up appropriately. Further work is required to better understand which populations amongst PICU survivors would be likely to benefit most from tailored followed up, what time interval and format is favoured, where resource allocation should be targeted to provide the greatest impact on patient outcomes, and prospective data are required to evaluate the implementation and value-added of post-PICU follow-up programs.

ACKNOWLEDGEMENTS

We would like to thank Francine Buchanan and Andrea McCormick for their invaluable support and contributions.

FUNDING

No funding to report.

POTENTIAL CONFLICT OF INTEREST

All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.

REFERENCES