Patient satisfaction, beyond its essential intrinsic importance, has also been associated with improved patient outcomes and treatment/medication compliance.1,2 The latter is of particular importance in the emergency department (ED) setting because of the typically transitory nature of the physician-patient relationship. In addition, patient satisfaction scores have become requisite reporting metrics for hospitals and physicians alike and are frequently linked to financial reimbursement.3–5 ED satisfaction ratings are especially important because research has shown that ED satisfaction scores disproportionately affect overall hospital satisfaction scores.6,7

Although much of the literature surrounding patient satisfaction has focused on adults, there is a growing body of work exploring pediatric patient/caregiver satisfaction. Specific factors that have been found to be positively associated with pediatric patient/caregiver satisfaction in the ED include pain control, clear communication regarding diagnosis/treatment/delays, shorter wait times, nursing attention, Spanish as a primary language, government insurance, and staff attitudes.8–12 However, most research to date has focused on neurotypical patients.

Notably, children with neurodevelopmental disorders (NDDs), including children with autism spectrum disorder (ASD), intellectual disability, developmental delays, and attention-deficit/hyperactivity disorder (ADHD), face increased challenges in health care settings while also using the health care system more frequently.13–17 For example, children with ASD are more than 4 times more likely than neurotypical children to present to the ED and, once there, are at increased risk for sedation/restraints.18,19 The complex challenges faced by patients with NDDs, their caregivers, and their medical providers are augmented by the prevalence of psychiatric comorbidity in this population and additional ED visits for mental health or behavioral concerns.20,21 The as-yet limited literature regarding patient/caregiver satisfaction in the ED for patients with NDDs has identified staff-patient interactions and shorter than expected wait times as important variables.22 The objective of this study was to explore the pediatric ED experience for patients with a broad range of NDDs and their caregivers compared with patients without NDDs in hopes of informing current patient care and directing future research for patients with NDDs.

METHODS

This was a retrospective review of National Research Corporation (NRC) survey questionnaires and corresponding electronic medical records (EMRs) for patients younger than 18 years presenting to a pediatric ED between May 2018 and September 2019. This pediatric level 2 trauma center is located in the Southwestern United States and has an annual census of approximately 96,000 visits; most patients are seen primarily by pediatric emergency medicine fellowship-trained physicians. This study was approved by the study institution's IRB.

The NRC is a validated patient experience survey questionnaire that includes questions, such as caregiver confidence in care, adequate treatment of the patient's pain and discomfort, overall rating of the ED, and if the caregiver would recommend the facility. The pediatric version of this survey is routinely used to assess caregiver satisfaction in multiple children's hospitals in the United States.23 At the study institution, NRC surveys are distributed to all caregivers of all patients the day after discharge from the ED. Surveys are preferentially sent through e-mail if an e-mail address is included in the patient's record. If there is no response, an automated phone call is placed, and if there is no response after a call, a text is then sent. If an e-mail address is not listed, this delivery approach is skipped, and if a phone does not receive text messages, this contact method is replaced by a second phone call.

Data retrieved from the EMR (linked from NRC surveys through unique encounter identifiers) included demographics, insurance status, primary language, Emergency Severity Index (ESI), ED length of stay (LOS), time from arrival to triage, time to provider assessment, and diagnoses. In this study, NDD was defined by International Classification of Diseases, Tenth Revision (ICD-10) codes; patients with intellectual disabilities (F70-F79), pervasive and specific developmental disorders (F80-F89), or ADHDs (F90) were included in the NDD cohort. All patient records were examined for confirmed diagnosis codes of the aforementioned diagnoses at either ED discharge or any prior encounter found in the study institution's electronic health record system.

Primary Outcome—Emergency Department Satisfaction

Consistent with the patient experience literature, the overall facility rating item of the NRC survey was used as a proxy for overall satisfaction with the ED.24 This item read, “Using any number from 0 to 10, where 0 is the worst facility possible and 10 is the best facility possible, what number would you use to rate this emergency department?” Responses were coded following a top-box approach in which selections of either 9 or 10 were considered a positive outcome and reflective of high satisfaction with the ED.24 Any other scores were considered negative and reflective of a lack of satisfaction with the ED.

Statistical Analysis

One-to-one propensity score matching between patients with and without NDDs was performed to reduce bias secondary to confounding variables/characteristics. Matching criteria included age, sex, ethnicity, health insurance payer, and ESI score. Health insurance payer and ESI score were included as grossly simplified yet still valuable indications of socioeconomic status and visit acuity. Caliper width on the logit of the propensity scores was set to 0.2 SDs of the logit.25 A multivariable logistic regression model, which controlled for age, sex, ethnicity, primary language (English vs Spanish), insurance payer, ESI score, time of the ED visit, ED LOS, time to triage, and time to provider assessment, was built on the matched cohort. All analyses were performed in R (version 4.1.0).

RESULTS

The overall survey response rate was 28.9%. All further statistics apply to the survey respondent population. Patients with NDDs made 1168 visits, and patients without NDDs made 14,929 visits. Demographics of all patients with and without NDDs may be found in Supplemental Digital Content 1, https://links.lww.com/JDBP/A424. Matching was successful for 1162 patients with NDDs (99.5%), resulting in a matched cohort sample size of 2324.

Matched Sample Demographics

In the matched cohort, the median age was 6 years, with an interquartile range (IQR) of 7 years. 33.8% of patients were female, 54.6% were Hispanic, and 78.7% had Medicaid insurance. 38.0% of patients had an ESI of 3. There were 358 (30.8%) patients with pervasive developmental disorders such as autism (F84), 208 (17.9%) patients with ADHDs (F90), 52 (4.48%) patients with intellectual disabilities (F70–79), 736 (63.3%) patients with specific developmental disorders of speech and language/specific developmental disorders of scholastic skills/specific developmental disorder of motor function (F80, F81, and F82), and 204 (17.6%) patients with other disorders of psychological development/unspecified disorders of psychological development (F88 and 89). Three hundred seventeen patients, 27.3%, had multiple diagnoses. Table 1 demonstrates the full summary statistics for the matched cohort. Propensity score matching balance data may be found in Supplemental Digital Content 1, https://links.lww.com/JDBP/A424.

Table 1. - Demographics and Visit Characteristics of the Matched Cohort as Stratified by Caregiver Satisfaction, N = 2324 Variable Highly Satisfied, n (%) Unadjusted OR (95% CI) p No Yes Age 6.92 (4.69)a 6.93 (4.57)a 1.00 (0.98–1.02) 0.942 Sex 0.505  Female 207 (35.03) 579 (33.41) 2.80 (2.39–3.29)  Male 384 (64.97) 1154 (66.59) 1.07 (0.88–1.31) Ethnicity 0.225  Hispanic or Latino 305 (51.61) 965 (55.68) 3.16 (2.79–3.60)  Not Hispanic or Latino 283 (47.88) 759 (43.80) 0.85 (0.70–1.02)  Unknown 3 (0.51) 9 (0.52) 0.95 (0.28–4.29) Language <0.001  English 437 (73.94) 1101 (63.53) 2.52 (2.26–2.82)  Spanish 154 (26.06) 632 (36.47) 1.63 (1.33–2.01) Health insurance <0.001  Commercial 158 (26.73) 338 (19.50) 2.14 (1.77–2.59)  Medicaid 433 (73.27) 1395 (80.50) 1.51 (1.21–1.87) Acuity (ESI score)b 0.471  ESI 2 73 (12.35) 213 (12.29) 2.92 (2.25–3.83)  ESI 3 218 (36.89) 664 (38.32) 1.04 (0.76–1.41)  ESI 4 264 (44.67) 724 (41.78) 0.94 (0.69–1.26)  ESI 5 36 (6.09) 132 (7.62) 1.26 (0.80–1.99) Hour of arrival 0.198  8 am to 10 pm 509 (86.13) 1452 (83.79) 2.85 (2.58–3.16)  11 pm to 7 am 82 (13.87) 281 (16.21) 1.20 (0.92–1.57) ED LOS (hours) 3.29 (2.34)a 2.79 (1.92)a 0.90 (0.86–0.94) <0.001 Time to triage (minutes) 1.33 (1.60)a 1.48 (2.02)a 1.05 (0.99–1.11) 0.058 Time to provider assessmentc (hours) 0.94 (1.13)a 0.61 (0.84)a 0.72 (0.65–0.79) <0.001 NDD <0.001  No 256 (43.32) 906 (52.28) 3.54 (3.09–4.07)  Yes 335 (56.68) 827 (47.72) 0.70 (0.58–0.84)

aMedian (IQR).

bThere were no patients with an ESI of 1 in this study.

cTime to provider assessment = time a provider signs up for a patient − that patient's triage time.

CI, confidence interval; ED LOS, emergency department length of stay; ESI, Emergency Severity Index; IQR, interquartile range; NDD, neurodevelopmental disorder; OR, odds ratio.

Primary Outcome—Overall Patient/Caregiver Satisfaction

Among patients with NDDs, 827 caregivers (71.2%) rated the ED highly (9 or 10/10); among patients without NDDs, 906 caregivers (78.0%) rated the ED highly (9 or 10/10; p = 0.0002). Multivariable analysis demonstrated a significant difference in the odds of rating the ED highly between patients with and without NDDs; caregivers of patients with NDDs had 25% lower odds of reporting high ED satisfaction (OR, 0.75; 95% confidence interval [CI], 0.62–0.91, p = 0.004). Complete multivariable analysis may be found in Table 2.

Table 2. - Multivariable Logistic Regression Model Built on the Matched Cohort Predicting ORs of Caregiver Satisfaction Variable OR (95% CI) p Age 1.00 (0.98–1.02) 0.728 Sex  Female Reference  Male 1.09 (0.89–1.34) 0.393 Ethnicity  Hispanic/Latino Reference  Not Hispanic or Latino 0.97 (0.80–1.19) 0.791  Unknown 1.23 (0.32–4.70) 0.760 Primary language  English Reference  Spanish 1.50 (1.19–1.89) <0.001 Medicaid  No Reference  Yes 1.37 (1.08–1.75) 0.011 Acuitya  ESI 2 Reference  ESI 3 0.97 (0.70–1.35) 0.853  ESI 4 0.73 (0.51–1.05) 0.091  ESI 5 0.92 (0.55–1.53) 0.744 Hour of arrival  8 am to 10 pm Reference  11 pm to 7 am 1.17 (0.89–1.53) 0.269 ED LOS 0.97 (0.91–1.03) 0.311 Time to triage 1.06 (1.00–1.12) 0.063 Time to provider assessmentb 0.76 (0.67–0.85) <0.001 NDD  No Reference  Yes 0.75 (0.62–0.91) 0.004

aThere were no patients with an ESI of 1 in this study.

bTime to provider assessment = time a provider signs up for a patient − that patient's triage time.

CI, confidence interval; ED LOS, emergency department length of stay; ESI, Emergency Severity Index; IQR, interquartile range; NDD, neurodevelopmental disorder; OR, odds ratio.

Secondary Outcomes

Among all patients in the matched cohort, primarily Spanish-speaking caregivers had 50% higher odds of reporting high ED satisfaction (OR, 1.50; 95% CI, 1.18–1.89). Medicaid insurance was associated with 39% higher odds of high ED satisfaction (OR, 1.39; 95% CI, 1.09–1.77). Every additional hour of wait time before seeing a provider was associated with 24% decreased odds of high satisfaction (OR, 0.76; 95% CI, 0.67–0.86).

DISCUSSION

In this study, we found a significant difference in caregiver-reported satisfaction with ED care between patients with and without NDDs. Caregivers of patients with NDDs were less likely to be satisfied with the ED. This study appears to be the first of its kind with respect to sample size, inclusion of patients with and without a broad array of NDDs, and use of a validated satisfaction survey used by many hospitals. Patients with NDDs represent a substantial proportion of patients seen in the ED; although it is difficult to compare the percentage of survey respondents with the percentage of overall ED visits, it is notable that asthma, for example, represents only about 5% of all pediatric ED visits, whereas over 7% of survey respondents in this study were caregivers of patients with NDDs.26 These results have profound implications for patients, providers, and institutions.

The unpredictable nature of the ED, with its high sensory load, uncertain wait times, and litany of transitions, can be a particularly stressful environment for patients with NDDs and their caregivers.17 Research has identified many interventional techniques to combat some of these challenges, including reducing visual and auditory stimuli, inclusion of caregivers, and staff education.17,27–29 These interventions reflect the importance of communication and interpersonal skills; 2 themes that almost universally throughout the NDD literature have been shown to be associated with satisfaction. In 2018, Kirsch et al.22 surveyed 378 families of patients with autism and demonstrated that these were the most important factors contributing to patient satisfaction in ED and urgent care visits. Unsurprisingly, communication has also been shown to be a driving factor of patient/caregiver satisfaction among the general pediatric ED population.8,10,30 It is important to recognize that caregivers of children with NDDs face potentially different challenges than caregivers of patients without NDDs, and these baseline characteristics may contribute in unpredictable ways to reported satisfaction.

Another factor found throughout the patient satisfaction literature for both patients with and without NDDs is wait times, which was identified as well in the current study. Every additional hour of wait time before provider assessment was associated with decreased odds of overall satisfaction. Interestingly, overall ED LOS was not significantly associated with decreased odds of satisfaction. This may be at least partially explained by the results of several studies that have delved further and demonstrated that perceived wait time is also a crucial determinant of patient satisfaction and potential earlier communication.12,31,32 Although wait times may not be modifiable, perception of wait times and communication regarding wait times are modifiable. In addition, physicians and nurses have been shown to be poor at predicting patient satisfaction; thus, patient/caregiver feedback is critical.3 Synthesis of research examining both general and population-specific factors is important because variables may be readily apparent in one population compared with another yet may be quite applicable.

The current study findings echo a recent study published by Campbell et al., which found that caregivers of hospitalized patients with ASD were less likely to “recommend the facility.”33 It is important to note that both this and the current study took place at PED/pediatric hospitals with providers trained specifically in working with children, with the additional benefits of child-life and other resources commonly found in specialized children's facilities. These collective results suggest that although there have been considerable contributions to the literature regarding children with NDDs and their experiences with the health care system, there is a lack of universal implementation of recommended techniques that these approaches are difficult to introduce into specific workflows/environments or are not as effective as expected.

An important limitation of this study is one inherent to many survey-based studies in that data are limited to the opinions of those who responded to the survey, and nonresponse bias is always a potential concern. The survey response rate in this study, although low at 28.9%, is comparable with standard patient satisfaction response rates.34,35 Another limitation of this study is the use of ICD codes as inclusion criteria and the inclusion of a broad range of NDD diagnoses; the use of ICD codes may overrepresent or underrepresent diagnoses, and the use of broad inclusion criteria may result in an inability to translate these data to specific individual disorders. Because of limitations in statistical power, we were unable to stratify by individual NDD diagnosis. Also, given the retrospective nature of the study, we were unable to analyze the reason for a patient's visit or the degree to which a patient's underlying NDD diagnosis played a role in the decision to seek ED care. We did not use ICD-9 codes in our search, but we anticipate minimal impact on sample size given that the date range of the study was well after institutional conversion to ICD-10. Another limitation of this study was the decision to base the outcome, high ED satisfaction, on a single question (ED rating) rather than a combination of questions, limiting our ability to examine and interpret the results. It is important to note that pediatric NRC surveys are completed by caregivers, not patients, and thus reflect patient satisfaction through the lens of the caregiver (although caregiver and patient experience are undoubtedly distinct yet closely intertwined). Future research may benefit from examining the 2 in both a discrete and unified manner.

CONCLUSION

Caregivers of patients with NDDs were less likely to be highly satisfied with the ED than caregivers of patients without NDDs. This disparity in reported satisfaction likely reflects a complex interaction of multiple factors, including modifiable and nonmodifiable visits, as well as patient and caregiver characteristics. Further research may evaluate specific, reproducible, and easily systematized interventions that improve the ED experience for caregivers of patients with NDDs and ultimately patients with NDDs.

REFERENCES 1. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013;3:e001570. 2. Lee MO, Altamirano J, Garcia LC, et al. Patient age, Race and emergency department treatment area associated with "Topbox" press Ganey scores. West J Emerg Med. 2020;21:117–124. 3. DeLaney MC, Page DB, Kunstadt EB, et al. Inability of physicians and nurses to predict patient satisfaction in the emergency department. West J Emerg Med. 2015;16:1088–1093. 4. Martin SR, Heyming TW, Fortier MA, et al. Do pediatrician interpersonal and personality characteristics affect patient experience? Acad Pediatr. 2022;23:336–342. 5. Mercer MP, Hernandez-Boussard T, Mahadevan SV, et al. Physician identification and patient satisfaction in the emergency department: are they related? J Emerg Med. 2014;46:711–718. 6. Abass G, Asery A, Al Badr A, et al. Patient satisfaction with the emergency department services at an academic teaching hospital. J Fam Med Prim Care. 2021;10:1718–1725. 7. Fenton JJ, Jerant AF, Bertakis KD, et al. The cost of satisfaction: a national study of patient satisfaction, health care utilization, expenditures, and mortality. Arch Intern Med. 2012;172:405–411. 8. Byczkowski TL, Fitzgerald M, Kennebeck S, et al. A comprehensive view of parental satisfaction with pediatric emergency department visits. Ann Emerg Med. 2013;62:340–350. 9. Heyming TW, Donaldson CD, Ehwerhemuepha L, et al. Multivariable analysis of patient satisfaction in the pediatric emergency department. Pediatr Emerg Care. 2022;38:e544–e549. 10. Locke R, Stefano M, Koster A, et al. Optimizing patient/caregiver satisfaction through quality of communication in the pediatric emergency department. Pediatr Emerg Care. 2011;27:1016–1021. 11. Magaret ND, Clark TA, Warden CR, et al. Patient satisfaction in the emergency department--a survey of pediatric patients and their parents. Acad Emerg Med. 2002;9:1379–1388. 12. Pagnamenta R, Benger JR. Factors influencing parent satisfaction in a children's emergency department: prospective questionnaire-based study. Emerg Med J. 2008;25:417–419. 13. Gurney JG, McPheeters ML, Davis MM. Parental report of health conditions and health care use among children with and without autism: National Survey of Children's Health. Arch Pediatr Adolesc Med. 2006;160:825–830. 14. Hand BN, Boan AD, Bradley CC, et al. Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group. Autism Res. 2019;12:1129–1138. 15. Lindgren S, Lauer E, Momany E, et al. Disability, hospital care, and cost: utilization of emergency and inpatient care by a cohort of children with intellectual and developmental disabilities. J Pediatr. 2021;229:259–266. 16. Lytle S, Hunt A, Moratschek S, et al. Youth with autism spectrum disorder in the emergency department. J Clin Psychiatry. 2018;79:17r11506. 17. Nicholas DB, Zwaigenbaum L, Muskat B, et al. Toward practice advancement in emergency care for children with autism spectrum disorder. Pediatrics. 2016;137(suppl 2):S205–S211. 18. Liu G, Pearl AM, Kong L, et al. A profile on emergency department utilization in adolescents and young adults with autism spectrum disorders. J Autism Dev Disord. 2017;47:347–358. 19. Lunsky Y, Paquette-Smith M, Weiss JA, et al. Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family. Emerg Med J. 2015;32:787–792. 20. Iannuzzi DA, Cheng ER, Broder-Fingert S, et al. Brief report: emergency department utilization by individuals with autism. J Autism Dev Disord. 2015;45:1096–1102. 21. Schott W, Tao S, Shea L. Emergency visits for autistic children and children with ADHD. Pediatrics. 2022;149(suppl 4):e2020049437V. 22. Kirsch SF, Meryash DL, González-Arévalo B. Determinants of parent satisfaction with emergency or urgent care when the patient has autism. J Dev Behav Pediatr. 2018;39:365–375. 23. National Research Corporation (NRC) Health. Available at: https://nrchealth.com. Accessed February 1, 2023. 24. Centers for Medicare & Medicaid Services. Available at: https://www.hcahpsonline.org. Accessed August 15, 2022. 25. Austin PC. Optimal caliper widths for propensity-score matching when estimating differences in means and differences in proportions in observational studies. Pharm Stat. 2011;10:150–161. 26. Simoneau T, Greco KF, Hammond A, et al. Impact of the COVID-19 pandemic on pediatric emergency department use for asthma. Ann Am Thorac Soc Apr. 2021;18:717–719. 27. Kouo T, Bharadwaj N, Kouo J, et al. Assessing ease of delivering emergency care for patients with autism spectrum disorders. J Dev Behav Pediatr. 2021;42:704–710. 28. Samet D, Luterman S. See-hear-feel-speak: a protocol for improving outcomes in emergency department interactions with patients with autism spectrum disorder. Pediatr Emerg Care. 2019;35:157–159. 29. Straus J, Coburn S, Maskell S, et al. Medical encounters for youth with autism spectrum disorder: a comprehensive review of environmental considerations and interventions. Clin Med Insights Pediatr. 2019;13:1179556519842816. 30. Johnson MB, Castillo EM, Harley J, et al. Impact of patient and family communication in a pediatric emergency department on likelihood to recommend. Pediatr Emerg Care. 2012;28:243–246. 31. Bidari A, Jafarnejad S, Alaei Faradonbeh N. Effect of queue management system on patient satisfaction in emergency department; a Randomized controlled trial. Arch Acad Emerg Med. 2021;9:e59. 32. Waseem M, Ravi L, Radeos M, et al. Parental perception of waiting time and its influence on parental satisfaction in an urban pediatric emergency department: are parents accurate in determining waiting time? South Med J. 2003;96:880–883. 33. Campbell K, Cunningham S, Neeley A, et al. Ratings of physician communication by caregivers of hospitalized children with and without autism. Hosp Pediatr. 2021;11:547–553. 34. Lee B, Hollenbeck-Pringle D, Goldman V, et al. Are caregivers who respond to the child HCAHPS survey reflective of all hospitalized pediatric patients? Hosp Pediatr. 2019;9:162–169. 35. Presson AP, Zhang C, Abtahi AM, et al. Psychometric properties of the Press Ganey® outpatient medical practice survey. Health Qual Life Outcomes. 2017;15:32.