Quality of life and healthcare utilization during the COVID-19 pandemic are more restricted in chronically ill than in healthy children: a tertiary care children’s hospital experience

The coronavirus disease 2019 (COVID-19) pandemic caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and the associated containment measures to prevent the spread of the virus profoundly influenced daily routine of individuals and families worldwide [1].

Children of all ages are at risk for COVID-19 [2], although the disease course is often milder and the prognosis better than in adults [3]. However, severe medical courses do occur, especially in high-risk patient groups including children with underlying diseases [4, 5]. In addition, serious secondary phenomena following COVID-19 such as the pediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) and long COVID have been documented in children [6‐8]. While the number of emergency department visits markedly dropped during the pandemic, there is evidence that caregivers delay presentation of their children to the emergency departments due to fear of contracting SARS-CoV-2 [9, 10]. Furthermore, as part of the containment measures, access to specialized medical care was restricted [11]. Reduced access to healthcare services is especially demanding for children with chronic diseases that require regular appointments and high standard of medical care.

Children and adolescents experienced a changed psychosocial environment and high levels of socio-emotional stress due to social distancing, lockdown and containment, isolation, temporary school and kindergarten closures as well as restrictions in activities [1, 12, 13]. Two nationwide representative studies of German and Norwegian children and adolescents reported high burdens caused by the pandemic and additionally led to significantly lower health-related quality of life than prior to the pandemic [14, 15].

Evidence on the impact of the COVID-19 pandemic on families with chronically ill children is limited [16, 17]. To our knowledge, there is no study evaluating and comparing the perceived impact on quality of life and healthcare utilization of their children among both, parents caring for chronically ill children and parents with healthy children.

The primary objectives of this study were to assess the differences between participants with chronically ill compared to participants with healthy children during the COVID-19 pandemic analyzing (i) concerns of contracting a SARS-CoV-2 infection, (ii) caregivers-reported health related and overall quality of life (HRQoL and QoL) of their children, and (iii) utilization and accessibility of medical care. The study was conducted spanning the second SARS-CoV-2 infection wave in Germany from October 2020 to March 2021 when infection numbers starting increasing again for the third wave [18‐20]. While during the second wave, no vaccination was available for the broad population, there was a substantial rise in COVID-19-related deaths, a massive impairment of mental health in the German population, and ongoing COVID-19-related restrictions in daily life [18].

The COVID-19 pandemic and the associated containment measures had a severe impact on everyday life of families and children. As many hospitals limited their services, disruption of healthcare is especially challenging for children with a chronic underlying disease and substantial medical demands. Furthermore, chronical ill patients could be at risk for a severe disease course when contracting COVID-19. These circumstances put children with a chronic disease at risk for psychosocial and health impairments. Recent publications have evaluated the impact of the COVID-19 pandemic on chronically ill compared to healthy adults [28‐30] and analyzed the differences in HRQoL before and during the pandemic in children with specific chronic diseases [31, 32]. However, this is the first study evaluating and comparing the caregivers’ concerns of COVID-19 for their children, the perceived impact on quality of life of their fosterlings, and the utilization of healthcare services in both, families caring for chronically ill children and families with healthy children.

Almost 50% of our questionnaire participants expressed major concerns about their children contracting SARS-CoV-2. This is in line with data presented by Nicholson et al., reporting 41% of parents of healthy children being majorly concerned about their children contracting COVID-19 [33]. Since our study was conducted spanning the second SARS-CoV-2 infection wave in Germany when the COVID-19-related death rate was drastically rising while a vaccination was not yet available for the broad population, at this time period the general level of uncertainty and fear from infection was extraordinarily high [18, 20]. Notably, we found no significant difference between the level of concern in families with chronically ill versus healthy children. Compared to our more heterogenous group of different chronic diseases in this study, Darlington et al. reported 85.4% of parents being concerned about their children contracting COVID-19 in a specific cohort of children suffering from cancer [34]. This is in line with our finding that guardians of children with a hemato-oncological condition were more concerned about their child contracting COVID-19 than were caregivers of other patient groups. Such differences may be explained by disease group specificities, current disease status such as higher perceived infection risks in cancer patients under chemotherapy as well as differences in public discussion and media coverage. To capture this aspect systematically, a larger cohort group with a detailed questionnaire would be required. We show that caregivers of chronically ill children evaluated the risk of a SARS-CoV-2 infection at the children’s hospital significantly less as “unlikely.” Darlington et al. support these findings by reporting a high-risk evaluation of COVID-19 transmission in the hospital by parents with children suffering from cancer [34]. This knowledge should be addressed in patient guidance through the hospital and outpatient clinic as well as in isolation considerations.

While there are multiple studies assessing the HRQoL of children and adolescents during the COVID-19 pandemic [22, 35], only a few of those are focusing on HRQoL of chronically ill children [31, 32]. In our study, 37% of all participants reported that the COVID-19 pandemic and the accompanying restrictive measures had a negative impact on their children’s health-related quality of life. Rihm et al. demonstrated a reduced caregivers-reported HRQoL in children with rare diseases during the COVID-19 pandemic [31]. In our study, for adolescents over 13 years of age but not for younger children, caregivers of chronically ill adolescents reported negative effects on HRQoL significantly more often than caregivers of healthy adolescents. This age dependency may be explained by more comprehensive impairment of social needs in an older child due to social distancing and school closure which could further be multiplied by the presence and respective burden of a chronic disease. This may be supported by the findings of Aman et al. who showed in 2022 that higher age of children with nephrotic syndrome was related with greater sleep disruption and therefore a decline in HRQoL during the COVID-19 pandemic [32]. When assessing caregivers-reported non-health-related QoL, over 50% of healthy children were reported that the COVID-19 pandemic and its associated restrictions had a negative impact. Several other studies assessing healthy children indicated similar results [35, 36]. Chronically ill children in our study cohort were reported to be significantly more often negatively impacted in their QoL due to the COVID-19 pandemic. This is in line with Onal et al., who reported an increase of treatment anxiety, lower satisfaction scores, and decrease of QoL in pediatric cancer patients during the COVID-19 pandemic [37].

Chronically ill children are dependent on continuous medical care and have regular follow-up and multidisciplinary visits. Healthy children usually only present for screening check-ups or with acute health issues. Alarmingly, our data indicated that medical appointments of chronically ill children were significantly more often postponed or canceled, although Remppis et al. showed that cancelation of routine appointments was perceived as a particular burden by healthcare providers while not being a suitable measure to prevent SARS-CoV-2 transmission [38]. Considering only the inpatient appointments, for which patients had a planned admission to a hospital ward for a diagnostic or interventional procedure, we show that almost as many appointment delays or cancelations were initiated by the patients’ families as were by the healthcare providers. Therefore, the combination of hospitals reducing healthcare services and caregivers avoiding healthcare utilization due to the fear of contracting COVID-19 points to a multi-faceted problem in healthcare for chronically ill children during a pandemic. Of note, caregivers of chronically ill children reported significantly more often to be willing to delay medical appointments in case of health issues. At the time of our study in the pandemic, the severity of COVID-19 for children and adolescents was still unclear but first reports assigned both adults and children with certain pre-existing conditions as higher risk groups for severe COVID-19 [39, 40]. Further, the German population’s fear from infection was presumable very high during that time which we could confirm for the participants we analyzed (Fig. 1). These facts could have provoked an increased avoidance behavior of caregivers of chronically ill children. Avoidance of medical facilities due to concerns of SARS-CoV-2 transmission has been shown in multiple other studies, including parents with healthy children [33] as well as parents with chronically ill children [34]. Remppis et al. demonstrated a considerable drop of emergency department visits, as well as hospital admissions at a tertiary care children’s hospital during the first year of the COVID-19 pandemic compared to previous years [38]. It is noteworthy that a few of the families with chronically ill and with healthy children stated that they would even delay seeking medical help in case of a life-threatening emergency. This is supported by the findings of Neill et al. in 2021, who illustrated in a retrospective survey that parents of healthy children did not always seek medical help even when their children were showing severe symptoms [41]. We therefore highlight the need to strongly instruct caregivers to utilize the healthcare system irrespective of pandemics, such as COVID-19, especially considering that children and adolescents experience mostly mild symptoms and are not in the risk group for severe COVID-19 infections [3]. Contactless digital healthcare options could counteract avoidance behavior of caregivers and therefore support good patient care, with 30.7% of our participants with chronically ill children stating to prefer contactless healthcare options during the COVID-19 pandemic. Mercuri et al. described a personalized telehealth model specifically designed for the treatment and follow-up examinations of chronic pediatric diseases [42]. The implementation of telehealth care services during the COVID-19 era is anticipated to become a permanent part of the healthcare system, providing long-term benefits, particularly for patients with chronic conditions who require frequent medical appointments and are at a higher risk of germ transmission [43] and chronically ill patients living in remote areas. 22.6% of the families with chronically ill children would have appreciated more specific information about the risks and precautions necessary for their children. The high emotional burden of families with chronically ill children as well as the caregivers’ avoidance behavior towards healthcare during the pandemic could be minimized through appropriate delivery of disease-specific information by healthcare providers.

There were limitations to this study. It was conducted at a large academic tertiary care children’s hospital and may therefore not be representative for other hospitals. The study could only be conducted in participants that were actually presenting in our hospital. Families who avoided hospital visits due to fear of infection could not be included in the study. Further, families that were not able to speak and read German meeting at least reference level B2 defined by the CEFR were excluded as they were not able to fully understand the questionnaire. The measured results could therefore even underestimate the multi-faceted problem of healthcare utilization and quality of life. There could be some additional unmeasured confounding factors (e.g., specific chronic disease, treatment intensity, disease severity) that may affect the results of the survey. The study measured the implications of COVID-19 only between October 2020 and March 2021, missing potential developments over the long-lasting course of the pandemic and the different restrictions at various time points. The study does not use validated questionnaires to evaluate the HRQoL, like the SF-36 [44], but rather single questions, not accounting for the different aspects of HRQoL which is proxy-reported in our study. Furthermore, the study does not explore HRQoL, other quality of life or healthcare utilization before the COVID-19 pandemic, denying the possibility of pre- and post-pandemic comparisons. Nevertheless, the consistency of findings of this study with the results from multiple other studies suggests that the results can be applied to a larger cohort.

According to their caregivers, chronically ill children suffered significantly more often from negative impacts of the COVID-19 pandemic on their quality of life than healthy children. Their medical appointments were more frequently postponed or canceled and parents were significantly more willing to delay medical consultations than parents of healthy children. In exceptional situations like the COVID-19 pandemic and its associated restrictions, it is therefore indispensable to particularly support families with chronically ill children in their specific concerns and needs. This could be achieved by reliable appointment allocation by the healthcare provider, offering contactless healthcare options, as well as frequently delivering information tailored to susceptibilities and precautions specifically necessary for their children.