Telehealth Use Before and During the COVID-19 Pandemic Among Children with Sickle Cell Anemia
Introduction
Sickle cell disease is a group of rare, congenital conditions that predominantly affect minority populations in the United States.1 The most common and severe subtype is sickle cell anemia (SCA).2 Children with SCA are at an increased risk of serious complications, including infection, stroke, and severe pain.3–5 Much of this morbidity can be prevented through receipt of routine preventive services, including daily medications and annual screenings.6 However, individuals living with SCA frequently lack access to these routine services, as evident through a paucity of experienced providers, low adherence to outpatient medical appointments and preventive services, and care fragmented across institutions and settings.7–10
The lack of access to care among those living with SCA is further compounded by racial inequity. As the majority of those living with SCA are Black, individuals face the challenges of managing a complex chronic condition while also experiencing racism and discrimination both within and outside of the health care system.11 For example, sickle cell disease receives 10 times less funding per patient than cystic fibrosis, despite affecting nearly three times the individuals in the United States.11–13 Food and Drug Administration-approved medications for those living with sickle cell disease are far fewer than for other rare, chronic conditions.12 Those living with SCA often face significant discrimination and delays when seeking emergency care for pain, often being inappropriately labeled as drug-seeking or addicts.11,14,15
The cycles of poverty that result from structural racism result in excess vulnerability to adverse social determinants of health among those living with SCA.11 These social needs, such as inadequate housing, lack of insurance and transportation, and discrimination, have been identified as barriers to accessing care.16–19 This is particularly pronounced among children with SCA, as nearly 90% of these children are enrolled in Medicaid at some point in their lives.20 The COVID-19 pandemic has likely exacerbated these barriers to accessing care among children and adolescents with SCA.
Also a result of the pandemic, health care providers have rapidly expanded telehealth. Telehealth is the use of telecommunications technology, such as live video conference and telephone, to manage health.21 Telehealth may be a high-impact opportunity to increase access to care among those living with SCA.21,22 However, little is known about the use of telehealth among this population. Therefore, our objective was to evaluate the receipt of outpatient care and the use of telehealth for these visits by children with SCA before and during the COVID-19 pandemic. In doing so, we aim to establish the feasibility of telehealth as an option for outpatient care for this population.
Methods
The study population included children 1–17 years old with SCA that were continuously enrolled in Michigan Medicaid from January 2019 to December 2020: an enrollment gap of 1 month per year were allowed. To be enrolled in Michigan Medicaid, families must meet predetermined criteria that reflect low income and/or the lack of access to other affordable health insurance.23 Therefore, Medicaid enrollment can be considered a proxy for low income. Children with any additional forms of health insurance were excluded to ensure complete capture of health services during this time. Children with SCA were identified using a validated claims-based definition. This definition identifies children with SCA with a high level of accuracy when compared with the gold standard of newborn screening.24
All outpatient visits for those in the study population were identified through this time period using validated Healthcare Effectiveness Data and Information Set (HEDIS) definitions.25 Outpatient visits were further classified as in-person visits or telehealth visits. Telehealth visits were identified using validated HEDIS definitions based on procedure modifier codes “GT,” “GQ,” or “95,” place of service code “02,” and telehealth service Healthcare Common Procedure Coding System codes.26–28 Among telehealth visits during the pandemic, the National Provider Identifier was obtained and linked to provider specialty. The study was approved by the institutional review board of the University of Michigan (#HUM00113310).
STATISTICAL ANALYSIS
Demographics (age, sex, race) were calculated for the study population as reported within the Michigan Medicaid data. The number of in-person and telehealth outpatient visits (web or telephone) were identified and summarized prepandemic (January 2019–February 2020) and during the pandemic (March 2020–December 2020), as stay-at-home executive orders due to the pandemic were implemented in Michigan in mid-March.29 The proportion of children with in-person outpatient visits only, telehealth visits only, and both types of visits during the pandemic was calculated. The rate of telehealth visits per 100 person-months was calculated prepandemic and for each month during the pandemic. Finally, the proportion of telehealth visits was assessed by provider specialty.
Results
There were 493 children with SCA enrolled in Michigan Medicaid during the study period. Mean age was 8.7 (±4.9) years at study entry; 51% were female and 89% were recorded in Medicaid enrollment files as non-Hispanic Black (Table 1). Prepandemic, there were 4,367 outpatient visits; 4,348 (99.6%) were in-person and 19 (0.4%) were telehealth (Fig. 1). During the pandemic, there were a total of 2,307 outpatient visits; 2,059 (89%) were in-person and 248 (11%) were telehealth; 345 children (70%) had in-person visits only, 5 children (1%) had telehealth visits only, and 90 children (18%) had both types of visits; 53 children (11%) did not have either type of visit during the pandemic (Table 2). Table 3 shows the breakdown for the modality of outpatient care during the pandemic by age group.
Fig. 1. Number of monthly in-person and telehealth outpatient visits among children with sickle cell anemia enrolled in Michigan Medicaid (n = 493).
| MEAN (SD) | n (%) | |
|---|---|---|
| Age at study entry | 8.7 (4.9) | |
| Age group at study entry (years) | ||
| 1–5 | 150 (30.4) | |
| 6–11 | 185 (37.5) | |
| 12–17 | 158 (32.1) | |
| Race/ethnicity | ||
| Black, non-Hispanic | 438 (88.8) | |
| White, non-Hispanic | 22 (4.5) | |
| Asian/Pacific Islander, non-Hispanic | <10 | |
| American Indian/Alaskan Native, non-Hispanic | <10 | |
| Unknown, non-Hispanic | 23 (4.7) | |
| Hispanic, regardless of race | <10 | |
| Sex | ||
| Male | 241 (48.9) | |
| Female | 252 (51.1) | |
| VISIT TYPE | n (%) |
|---|---|
| In-person only | 345 (70) |
| Telehealth only | 5 (1) |
| Both telehealth and in-person | 90 (18.3) |
| Neither | 53 (10.7) |
| VISIT TYPE | 1–5 YEARS OLD AT STUDY ENTRY (n = 150), n (%) | 6–11 YEARS OLD AT STUDY ENTRY (n = 185), n (%) | 12–17 YEARS OLD AT STUDY ENTRY (n = 158), n (%) |
|---|---|---|---|
| In-person only | 114 (76.0) | 125 (67.6) | 106 (67.1) |
| Telehealth only | 0 (0) | 4 (2.2) | 1 (0.6) |
| Both telehealth and in-person | 19 (12.7) | 35 (18.9) | 36 (22.8) |
| Neither | 17 (11.3) | 21 (11.3) | 15 (9.5) |
During the early part of the pandemic, there was a sharp increase in telehealth use compared with prepandemic levels (prepandemic: 0.28 visit per 100 person-months, March–May 2020: 6.02 visits per 100 person-months). As the pandemic progressed, there was a decline in use (June–December 2020: 4.61 visits per 100 person-months); however, this still represented nearly a 16-fold increase in telehealth compared with prepandemic levels. Specialties associated with telehealth visits were hematology (49%), adult subspecialists (27%), or pediatrics/family medicine (14%). Younger children had a higher proportion of in-person visits as compared with older children (Table 3). Please see Appendix Table A1 for provider specialties for all telehealth outpatient visits.
Discussion
This is the first study to assess trends in telehealth use among children and adolescents with SCA. Before the pandemic, the use of telehealth for outpatient care was nearly nonexistent among this population. However, similar to other conditions, use of telehealth rapidly increased during the pandemic.30,31 This suggests that telehealth may be a feasible option to increase access to care for children with SCA.
Telehealth may improve access to care among children with SCA through several mechanisms. First, telehealth can be used to connect those with SCA to the limited number of health care providers who have expertise in managing their condition, such as hematologists (the primary subspecialists caring for those with SCA) or primary care providers knowledgeable about sickle cell care.32 Indeed, our results show that the majority of telehealth visits during the pandemic were with hematologists. Increased access to knowledgeable providers may also help bridge gaps in care for adolescents transitioning from pediatric to adult care.33 Second, because telehealth may reduce transportation costs and requires less time off of work and school, it may improve the ability of individuals living with SCA to adhere to routine outpatient care and obtain preventive services.
It is important to note, however, that patients may still be required to travel and take time off for follow-up procedures or laboratory visits depending on the type of visit done through telehealth. Finally, telehealth can be used on-demand to help patients manage pain exacerbations with providers who know them well. This type of access has the potential to reduce emergency department visits and hospitalizations for pain control.
Our finding that telehealth visits began to decline after the early part of the pandemic suggests that there are gaps in knowledge about the ways in which telehealth must be optimized to increase access to care. For instance, it is unclear as to what types of outpatient visits are most appropriate and effective for telehealth delivery; for example, a visit to decide on a medication may be best suited for in-person, while a follow-up visit for such a medication may be appropriate for telehealth.
Although this study indicates that telehealth may be a feasible option to provide outpatient care to children with SCA, this does not equate to an improvement in access to care for these children and families. To optimize telehealth use among children and adolescents with SCA, a deep understanding of family, child, and adolescent preferences regarding telehealth delivery is required.34 Incorporating patient preferences for telehealth will provide key insights regarding the accessibility, accommodation, and acceptability of this method of health care delivery among individuals living with SCA. Identification of the specific barriers and facilitators for telehealth use provides critical knowledge that may inform best practices for the implementation of telehealth programs.34,35
In addition, providers such as experienced hematologists and primary care providers must be willing to engage with this method of care delivery. Prior research has identified historical barriers to telehealth adoption among providers, including reimbursement restrictions, lack of interest, complex technology, and low patient demand.36,37 However, recent changes in health policy have altered the landscape for telehealth adoption.38 For instance, during the COVID-19 pandemic, nearly all commercial and public insurance programs introduced reimbursement reforms that have eliminated past barriers to telehealth use.39 However, our study showed that telehealth visits decreased as the pandemic continued. Therefore, it is clear that nonmonetary barriers impact continued use of telehealth by health care providers. To fully understand the optimal delivery of telehealth for those with SCA, further research is necessary to identify the contemporary barriers and facilitators to telehealth use among providers who care for this population.
This study has limitations. First, the dataset is limited to those continuously enrolled in Medicaid; therefore, the patterns of telehealth use observed among this population may be different than those that are commercially insured, uninsured, or have gaps in insurance coverage. Second, our study population, children with SCA, was identified using administrative claims as opposed to the gold standard of newborn screening. While some misclassification is possible, our case definition has a high level of sensitivity and specificity to identify children with SCA.24
We could not validate the training of nurse practitioners in a reliable fashion; therefore, we did not attribute nurse practitioners into specialties in which they may have received advanced training. In addition, we were unable to determine if the telehealth visit occurred with a provider familiar to the child or family. Finally, we did not stratify by race in the analysis due to the inability to examine any societal, environmental, or structural factors among Medicaid enrollees for which race is serving as a proxy measure; this precludes assessment of which specific subgroups of children may benefit from telehealth.40
Conclusions
The use of telehealth rapidly increased among children and adolescents with SCA during the COVID-19 pandemic; the largest percentage of these visits were with hematologists. Additional research is necessary to understand patient and provider preferences for telehealth and the roles that federal and state policies play in physician participation in telehealth.
Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.
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Appendix
| PROVIDER SPECIALTY | NUMBER OF VISITS (%) |
|---|---|
| Pediatric hematology/oncology | 131 (49.1) |
| Adult subspecialist | 71 (26.6) |
| Pediatrics | 38 (14.2) |
| Nurse practitioner | 15 (5.6) |
| Pediatric subspecialist | 5 (1.9) |
| Family medicine | 3 (1.1) |
| Adult subspecialist (OB-GYN) | 2 (0.7) |
| Physician assistant | 1 (0.4) |
| Social worker | 1 (0.4) |