“Everyone Screens to Some Extent”: Barriers and Facilitators of Developmental Screening Among Children with Sickle Cell Disease: A Mixed Methods Study

Abstract

Background:

Developmental delays are common among children with sickle cell disease (SCD). Existing guidelines support consistent screening to increase the identification of deficits and support referral to rehabilitative interventions, yet adherence remains variable. This study sought to assess current practices and identify barriers and facilitators to improve developmental screening for children 0-3 years with SCD.

Procedure:

A mixed methods approach, guided by The Exploration and Preparation stages of the EPIS framework, assessed developmental screening practices among primary care providers and hematologists. Phase 1 included the SCD Developmental Surveillance and Screening Guideline and Practice Survey. Phase 2 included the SCD Developmental Screening Organizational Survey alongside semi-structured interviews. Descriptive and qualitative methods summarized the findings.

Results:

Thirty-three providers from general pediatrics and hematology completed Phase 1. Use of standardized developmental screening measures was variable, with the most frequently used being the Modified Checklist for Autism in Toddlers (77%) and the Ages and Stages Questionnaire (55%). Fifteen providers participated in Phase 2, and reported they were most likely to engage in changes to improve their practice (mean = 4.4/5) and least likely to support spiritual health and well-being (mean = 3.5/5). Three themes emerged: 1) developmental screening is not standardized or specific to SCD, 2) children with SCD benefit from a multidisciplinary team, and 3) healthcare system limitations are a barrier.

Conclusions:

Developmental screening is inconsistent and insufficient for young children with SCD. Providers are interested in supporting children with SCD but report a lack of standardized measures and consistent guidance as barriers.

INTRODUCTION

Sickle cell disease (SCD) is associated with developmental delay and cognitive deficits.^1-3 Chronic anemia, low oxygen saturation,⁴ sleep-disordered breathing,⁵ cerebral infarcts,⁴ and low socioeconomic status⁴ are risk factors for cognitive impairments. Developmental delay affects between 17.5% and 50% of children with SCD under 4 years of age.⁶ However, developmental progress is not carefully monitored among children with SCD, and deficits often remain undiagnosed.⁷ Early childhood is a critical time to screen for delays because children can receive evidence-based and federally mandated resources to remediate developmental deficits before entering school.

The American Academy of Pediatrics (AAP) and American Society for Hematology (ASH) guidelines recommend preventive, routine developmental screening at 9-, 18-, and 30-month-old visits in the medical home.^8,9 The average national adherence to these guidelines has improved over the past 20 years, but screening rates remain variable.^10-13 An AAP pilot project increased rates of screening to 85%, but when developmental delay was indicated, referrals for early intervention services occurred for only 61% of children.¹⁴

Most children with SCD in the United States have a hybrid medical home between the primary care provider (PCP) and the hematologist. A gap exists between these healthcare providers as to who should be responsible for developmental screening. Our team found that 50% of infants and toddlers within our SCD clinic population were delayed in cognition and language development, yet none had been referred to early intervention services.¹⁵

The purpose of this study was to determine the current practice of developmental screening and referral to early intervention and to understand barriers and facilitators of surveillance and screening of development among children with SCD. The results will inform interventions to improve developmental screening practices among providers.

METHODS

The Institutional Review Board at Washington University School of Medicine approved this study. A mixed-methods prospective approach including surveys (Phase 1 & 2) with supporting interviews (Phase 2) was used to identify: (1) current practices of developmental screening and referral to early intervention and (2) barriers and facilitators to guideline adherence among clinical practices serving children with SCD. This study focused on the Exploration and Preparation stages of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework.¹⁶ Surveys and interviews were used to assess the system, organization, provider, and client-level factors affecting developmental screening (Exploration) and strategies to support more consistent implementation of developmental screening (Preparation). Qualitative methods followed the Consolidated Criteria for Reporting Qualitative Research Checklist (COREQ).¹⁷

Participants

Participants were eligible if they were pediatric providers in primary care (PCPs) or hematology who could potentially provide care to young children with SCD. Initial recruitment was through the Pediatric and Adolescent Ambulatory Research Consortium hosted at Washington University in St. Louis. Participants were asked to identify additional team members who were involved in screening or referring children with SCD. We sought to recruit 40 participants to complete surveys and interviews (20 medical providers, 20 staff members) to accurately represent clinical perspectives and achieve saturation of themes.^18,19

Phase 1: Developmental Surveillance, Screening Guideline, and Practice Survey

The Developmental Surveillance, Screening Guideline and Practice Survey consisted of 15 multiple-choice items to assess the awareness, practices, attitudes, and barriers of developmental surveillance and screening. The survey was developed by the research team and piloted with providers. Surveys were distributed online through the Research Electronic Data Capture (REDCap) tool hosted at Washington University.^20,21 Providers were asked about their level of involvement in developmental surveillance in their practice. The 5 components, as defined by the AAP, included: (1) eliciting/attending to parents’ concerns about their child’s development, (2) documenting and maintaining developmental history, (3) making accurate observations about the child, (4) identifying risk and protective factors, and (5) maintaining an accurate record of documenting the process and findings.²² The survey is available in the supplemental materials and at https://wustl.box.com/v/SCANSshare1224. Demographic information including age, gender, ethnicity, race, profession, and practice setting was collected.

Phase 2: Developmental Screening Organizational Survey and Practice Interviews

The survey and a semi-structured interview guide were developed using the results from the results from Phase 1 and informed by the inner and outer contexts of EPIS. The Organizational Survey was adapted from the Practice Adaptive Reserve Scale²³ to understand the commitment of individuals, norms, and values of the organization as the climate for implementing new methods. The survey consisted of 15 items that were scored on a 5-point Likert scale from “strongly disagree” to “strongly agree” and is available in the supplementary materials and online at the link above.

The interview guide is included in the supplemental materials, at the above link and covered topics exploring: (1) attitudes and perceptions regarding developmental screening, (2) practices of developmental screening and referrals for children with SCD, and (3) barriers and facilitators for developmental screening and referral for children with SCD. A team that included a pediatric hematologist, pediatric occupational therapists, implementation scientists, and psychologists developed and reviewed the interview guide. Interviews were conducted by 2 individuals experienced and trained in qualitative methodology (NS, CRH).

Analysis

Descriptive statistics were used to summarize responses on surveys in Phase 1 and Phase 2. Interviews were audio recorded, transcribed verbatim, and de-identified using a professional transcription service (Landmark Associates, Inc., Phoenix, AZ). Qualitative data were managed in NVivo 20 version 1.6.1 qualitative analysis software. The coding team (HER, AP, NQ) was supervised by a team member with over a decade of qualitative research experience (AJH). The initial set of codes was developed using a mixed deductive and inductive coding approach from the EPIS-informed semi-structured interview guide. Two members of the coding team (AP, NQ) independently coded the first two transcripts and met with the full coding team (AJH, HER, AP, NQ) to discuss findings, resolve inconsistencies, inductively add additional codes to the codebook, and develop a preliminary coding scheme. The remaining transcripts were coded, and the coding scheme was refined as new codes were identified. The coding team used a constant comparison approach to compare concepts across categories to identify links, patterns, and differences to inform themes identified within the data.^24-26 Data collection was determined complete when the coding team reached data saturation.¹⁸

RESULTS

Thirty-three healthcare providers and clinical staff participated in this study. Of those, 22 reported to work as PCPs and 11 in hematology.

Phase 1: Developmental Surveillance, Screening Guideline and Practice Survey

All participants completed the General Developmental Surveillance and Screening Guideline and Practice Survey. About one-third of PCPs (n=7) reported to be overseeing care for a child with SCD. Of the 11 hematology providers, the majority (n=10) reported they were currently overseeing care for at least one child with SCD. Participant characteristics and key results from the Developmental Surveillance, Screening Guidelines, and Practice Survey are outlined in Table 1.

TABLE 1.

Demographic characteristics of participants and key results

		Primary Care Providers (n=22) n (%)	Hematologists (n=11) n (%)
Gender
	Male	11 (50)	1 (10)
	Female	11 (50)	10 (90)
Race/Ethnicity
	White	17 (77)	7 (64)
	Black or African American	1 (5)	3 (27)
	Asian	2 (10)	1 (10)
	Hispanic	1 (5)	1 (10)
	No response	1 (5)	0
Region of Clinical Practice
	Urban	5 (23)	11 (100)
	Suburban	16 (73)	0 (0)
	Rural	1 (5)	0 (0)
Age in years (mean, range)		50 (31-65)	41.1 (35-52)
Years in practice (mean, range)		20.5 (4-36)	10.5 (3-29)
Role
	Medical doctor	22 (100)	7 (64)
	Nurse practitioner	0 (0)	4 (36)
Engagement in 5 Core Components of Developmental Surveillance
	Five	11 (50)	2 (18)
	Four	7 (32)	3 (27)
	Three	3 (14)	4 (36)
	Two	0 (0)	2 (18)
	One	1 (5)	0 (0)
Awareness of AAP Screening Recommendations
	Aware	19 (86)	3 (27)
	Aware, not familiar with details	3 (14)	4 (36)
	Not aware	0 (0)	4 (36)
Methods for Learning about Screening Recommendations*
	Medical journals	12 (55)	1 (10)
	Training	5 (23)	4 (36)
	Peers	5 (23)	2 (18)
	Continuing education	8 (36)	0 (0)
Screening Timepoints
	All patients	17 (77)	0 (0)
	Some patients	3 (14)	3 (27)
	None or no policy	2 (10)	8 (73)
Instruments Used*
	ASQ	12 (55)	0 (0)
	DDST	1 (5)	1 (10)
	MCHAT	17 (77)	0 (0)
	PEDS	2 (10)	0 (0)
	DAYC	1 (5)	0 (0)
	Custom tool	1 (5)	0 (0)
	SWB-YC	1 (5)	0 (0)
	CSBS	1 (5)	0 (0)
	Not	0 (0)	2 (18)
	standardized	0 (0)	2 (18)
	Not sure	0 (0)	1 (9)
	No screening	0 (0)	7 (63.7)
Reported Barriers to Developmental Screening
	Time	15 (68)	10 (91)
	Reimbursement	11 (50)	0 (0)
	Lack of knowledge about guidelines	1 (5)	6 (55)
	Staff	4 (18)	4 (36)
	Confidence	0 (0)	1 (10)
	Referral options	2 (10)	0 (0)
	Treatment options	1 (5)	2 (18)
	Not necessary	0 (0)	0 (0)
	Language	0 (0)	0 (0)
	Caregiver completion	1 (5)	0 (0)
Beliefs Related to SCD and Developmental Delay
	Same risk	1 (5)	0 (0)
	Higher risk	16 (73)	11 (100)
	Not sure	5 (23)	0 (0)

Note. *participants could select more than one instrument; AAP = American Academy of Pediatrics; ASQ = Ages and Stages Questionnaire 3; DDST = Denver Developmental Screening Test; MCHAT = Modified Checklist for Autism in Toddlers; PEDS = Parents’ Evaluation of Developmental Status; DAYC = Developmental Assessment of Young Children; SWB-YC = Survey of Well-Being of Young Children; CSBS = Communication and Symbolic Behavior Scale; SCD = sickle cell disease.

Providers were asked to self-report their awareness of the developmental screening recommendations as outlined by the AAP. Only 1 hematologist reported using standardized measures to track the development of young children, whereas PCPs reported using a handful of different measures, with the most commonly reported being the Modified Checklist for Autism in Toddlers (MCHAT) and the Ages and Stages Questionnaire (ASQ).^27,28

Phase 2: SCD Developmental Screening Organizational Survey and Interviews

Fifteen providers participated in Phase 2. Participants included 6 pediatricians, 4 nurse practitioners, and one of each of the following: hematologist, nurse coordinator, nurse navigator, medical assistant, and triage nurse.

SCD Developmental Screening Organizational Survey

Respondents were most likely to agree that people in their practice actively sought new ways to improve (mean = 4.4), understand their role (mean = 4.3), and that their colleagues valued different points of view (mean = 4.1). Respondents were least likely to endorse the following: their practice supported spiritual health and well-being (mean = 3.5), leadership ensures sufficient time to improve care (mean = 3.6), and providers have the information needed to do their jobs well (mean = 3.7). Responses are summarized in Figure 1 and complete survey results are in Table 2.

Figure 1.

Organizational Survey Results

TABLE 2.

SCD Developmental Screening Organizational Survey Results

Please indicate how strongly you agree or disagree with the following statements (n=15)
	Strongly disagree (1)	Disagree (2)	Neutral (3)	Agree (4)	Strongly agree (5)	Mean
1. People in our practice actively seek new ways to improve how we do things	0	0	0	9	6	4.4
2. This practice values people who have different points of view	0	0	3	7	5	4.1
3. We regularly take time to consider ways to improve how we do things	0	1	4	6	4	3.9
4. The leadership in this practice is available for consultation on problems	1	0	2	7	5	4.0
5. People in this practice understand how their jobs fit into the rest of the practice	0	0	0	11	4	4.3
6. Difficult problems are solved through face-to-face discussions in this practice	0	1	1	10	3	4.0
7. Staff rarely get together to talk about their work	0	1	1	10	3	4.0
8. People in this practice have the information that they need to do their jobs well	1	0	2	8	4	3.7
9. The practice leadership makes sure that we have the time and space necessary to discuss changes to improve care	1	0	3	6	5	3.6
10. Staff feel like their mistakes are held against them	0	2	1	9	3	3.9
11. It is just by chance that most serious mistakes don’t happen in our practice	0	0	4	8	3	3.9
12. We encourage patients to spend more time outside in nature	0	1	2	8	4	4.0
13. Most people in this practice are willing to change how they do things in response to feedback from others	0	1	4	8	2	3.7
14. Decisions are made in this practice with little input from those doing the work	0	1	1	10	3	4.0
15. We give the attention to spiritual health and well-being that patients feel they need	0	1	4	6	3	3.8

Developmental Screening Practice Interviews

Participants described that developmental screening occurred in pediatric practice, but the emphasis was on identifying major delays and commonly recognized neurodevelopmental disorders (e.g., autism spectrum disorder). Participants described following personal and clinic norms, often without a standardized protocol. Consequently, providers felt that children with more subtle indicators of developmental delay may not get adequate screening, diagnosis, or referral to intervention. Barriers and facilitators were described for screening for developmental delay, referring to supportive services, and engaging family members in the process. We identified 3 themes: (1) developmental screening is not standardized or specific to SCD; (2) children with SCD benefit from multiple disciplines of care; and (3) healthcare system limitations are a barrier.

Theme 1: Developmental screening is not standardized or specific to SCD

Overall, participants agreed that screening for developmental delay is necessary and described positive attitudes toward the AAP guidelines. One participant stated, “Standardized screenings are really, really important to help make sure we don’t miss things” (P.14). However, some participants described that many providers do not use standardized assessments: “We don’t have any formal developmental screen, except the questions we know about” (P.6). Providers emphasized the importance of time efficiency in developmental screening, stating:

I would certainly be interested in doing something more and better as long as it’s something that is time-efficient because we have 15 minutes to do the entire visit…if it’s some long developmental questionnaire that we have to ask, or a parent with a kid running wild around the room has to fill out, that never happens.

(P.9)

When standardized measures were used, participants reported most frequently using the ASQ and the MCHAT, which screen for moderate developmental delay and autism spectrum disorder, respectively.^29,30 However, multiple participants described that these commonly used tools may be missing important developmental information or that families may require more support to complete them. One provider described, “I think that some of the questions could be freshened up a little” (P.3), and another stated, “I would say some of the questions, particularly like on the MCHAT, I have to explain the question to get a good answer. They are certainly not perfect” (P.12).

Participants felt that most providers engage in some type of developmental screening, but the process is highly variable and is not customized based on a child’s diagnosis or risk for delay. Participants were interested in a tool specific for SCD, stating, “I think the current screening practices are adequate, but I think I would like to see a little more just for the sickle cell patients because there are some subtle things we may be missing” (P.12). One provider stated, “We treat those patients exactly the same as our non-sickle cell patients and we do the screening questionnaires that they do” (P.1).

Theme 2. Children with SCD benefit from multiple disciplines of care

Participants described that monitoring child development is typically the responsibility of the PCP: “It [developmental screening] is one of the most important things we do in primary care” (P.14). The focus of developmental screening in primary care was reiterated by hematologists as well: “We don’t have the formal developmental screening. For those, we rely on the primary care physician” (P.6). Participants described that referral to therapy services occurred when a delay was identified during screening, with expressive language being the most frequent trigger for referral: “Expressive language delay, exactly like you would expect, is the most common thing I end up referring for speech therapy” (P.3).

Participants expressed that children with SCD benefit from having multiple providers assessing their development: “I also think that they’ve already been plugged into children’s hematology sickle cell clinics, so I think they get 2 different opportunities for assessment and evaluation and intervention” (P.1). Other participants expressed uncertainty about caring for a child with SCD: “It’s hard to know whether or not it’s from their sickle cell, or if it’s—and also, you don’t want to fail a child” (P.4). Participants commented that disease-specific, intentional services make a big difference. One participant reported:

I think that would be useful for a lot of these families [with children with SCD] to have social work assistance…having access to services right there in the hospital and the parents get familiar with that, lend more so that you guys might have a leg up on us with coordinating some of these things for some of the families.

(P.1)

Because of the challenges and symptoms associated with SCD, children with SCD often have more interactions with their hematologist than their PCP, and participants shared that children with SCD could benefit from specialized screening as a part of their clinical visits in hematology. As one participant stated, “I’m not opposed to the hematologist thinking it’s their primary responsibility, too” (P.14).

Theme 3: Time, funding, trust, and provider communication are barriers to consistent developmental screening

Participants described time limitations, lack of staff, and inadequate reimbursement as barriers to completing developmental screening regularly. One participant commented on reimbursement, saying:

You’re talking about safety, nutrition, home environment, social issues. All of the things that are required in addition to parental concerns and physician concerns, I would say, would need an hour to see every patient and cover all of that. There aren’t enough hours in the day to do that, and no one could make a living doing that. It’s impossible.

(P.12)

Participants also described that staffing has been especially difficult in recent years. The pandemic had a large impact, as described by one participant:

During the pandemic, our office has been chronically understaffed, and we don’t have the staff to administer the questionnaires, so we are doing it all ourselves. We don’t even have the personnel in place to officially do that and see our patients.

(P.12)

Many providers discussed the impact of racism and historical and present exclusion from the healthcare system. Specifically, as one participant described:

I think because of distrust of the medical community and various socioeconomic factors, many people don’t want somebody coming to their home….Particularly for a lot of low-income people, there are not good resources to help them just with parenting. Like years ago, and it’s not that they’re still available… again, the pandemic hit, and things are just not as available.

(P.12)

Participants also described long wait times for children to be fully evaluated: “A neuropsych testing situation—that is months out. We only currently have 1 neuropsychologist” (P.8). Another participant noted that getting connected with rehabilitation providers through a state-run early intervention system is time consuming and difficult: “I’d say it’s taken 2 to 3 months. I’ve had parents say to me like, ‘We can’t get in. We can’t get in. They’re so backed up. I get no communication from [state early intervention system], and I just rely on the parents telling me. I’ll usually be like, ‘What services are you getting, how often?’” (P.9).

Subtheme 3a: Importance of family partnerships

Participants described that families with children with SCD often juggle multiple competing priorities in their lives, and developmental screening may not appear to be a top priority. As one participant stated:

Particularly in [SCD], because it is a chronic disease and a lot of parents are just getting through in that 0 to 3 range, and they’re just coming to grips with the fact that their child has this disease that is awful, and so just can’t deal with anything else right now.

(P.2)

Many participants described the importance of the caregiver and family in getting a child connected to follow-up services. This was summarized by one participant, saying:

It’s beyond my control once I refer them, getting it set up. But it could be the parents’ work schedules, and there’s no times that they can get there. You know? There’s all different kinds of variables. Also, if it’s a parent who may not even voice to me that, “Oh, I don’t think anything’s wrong and I really don’t wanna do this, but the doctor said I should,” that could take longer as well.

(P.9)

Subtheme 3b: Intentional programming can support developmental screening

Despite barriers in time, staff, and funding, participants acknowledged the importance of completing standardized developmental screening regularly. Participants commented that referring children to providers within the same system helped to increase communication: “We can refer them to a pediatrician in our hospital. Then it’s more collaboration, because they’re also being seen for sickle cell there too” (P.10). Support staff that can specifically focus on supporting families in connecting to community and school-based services can increase access to intervention for children with SCD:

We do have a school liaison that works with our program. She is always on the neuropsych testing just because that targets where the problem is so that she can help come up with interventions with the school. She does talk to the school.

(P.2)

Additionally, participants noted that referring to outside programming such as early intervention is helpful for supporting children with SCD. One participant shared:

I personally think that we should probably start referring more of our patients to the [state early intervention] program ‘cause I do think that they are a great help, not only with just the milestones, but just helping the parents with parenting in general, and just knowing what to look for that should raise red flags for the families as well.

(P.10)

DISCUSSION

This mixed-method study explored providers’ awareness, practice, and perceived challenges regarding developmental screening for young children with SCD from both the primary and specialized care perspectives. While participants endorsed the importance of developmental screening, multiple barriers were acknowledged. Results from the organizational survey revealed generally positive ratings about their practices, but the qualitative results provided more specific barriers to developmental screening. Intervention at the individual, clinic, and system levels is needed.

There is no consistency in the use of validated screening tools. Children with SCD are likely screened with measures that are not standardized or specific to SCD, likely contributing to insufficient identification of subtle deficits emerging in the first years of life. Of standardized measures, the ASQ and MCHAT were the most used. Both the ASQ and MCHAT typically rely on caregiver report and do not offer a high level of specificity in domains most affected among those with SCD. The MCHAT has reported similar rates of detection across racial identities.³¹ However, bias within the screening tools themselves or in the procedures likely affects responses and results of developmental screening.^32,33 There is a need for improvement and validation of psychometric measures as it is not clear if the instruments being used are sensitive or specific enough to identify subtle indicators of cognitive delay among young children with SCD.³⁴ More research is needed to determine to what extent current screening measures adequately identify developmental delay among young children with SCD.

Participants suggested the need for multilevel interventions that include scaffolding services and supporting caregiver follow-through. Providers' interest in more training and support for comprehensive services corresponds to our previous study with early intervention providers, which identified the value of connecting children with SCD to other follow-up care, such as early intervention services.³⁵ Developmental screening and referring to intervention has been a consistent challenge, with caregivers often being responsible for supporting the process.^36-38 To our knowledge, children with SCD are not automatically eligible for early intervention services in most states.³⁴ To increase screening and intervention for all children, as emphasized in Healthy People 2030,^11,39 targeted efforts are needed to identify ways to support embedded developmental screening in both routine and specialized care, with support for follow-up and referral to intervention services.

Few hematology practices had established policies or instruments to complete developmental screening. Most hematologists were less familiar with screening guidelines and indicated less comfort with developmental screening compared to PCPs. The feasibility of implementing developmental screening in specialized services for individuals with SCD has been reported.⁴⁰ Yet specialty providers may lack the knowledge to conduct screening and have limited capacity (e.g., limited time, personnel) to do so at their clinic. Providers perceived barriers in communication, leadership support, and less willingness in the practice to improve in response to feedback, which may hinder implementation and sustainment efforts⁴¹ to integrate screening into hematology practices. These results demonstrate the need to develop tailored strategies targeting hematologists to increase the awareness of developmental delay risks among children with SCD, boost organizational readiness in instilling change,⁴² and showcase the success of how hematology practice may contribute to improved screening, identification of developmental delays, and linking children with services.

As with all studies, there are limitations. This study recruited participants from 1 metropolitan area, primarily consisting of providers in urban or suburban settings. Additionally, we did not collect demographic information for participants in Phase 1 to minimize participant burden and could not compare respondents and non-respondents. While we did not meet our recruitment targets, we did recruit representatives from the majority of treatment sites in our region and feel this is an accurate reflection of clinical perspectives. Additional work is needed to embed perspectives of individuals living with SCD and community advocates. Previous research has highlighted that regional disparities, like variations in state-level practices, might significantly contribute to differences in screening practices.¹¹ However, perspectives of PCPs and specialists likely reflect larger trends, particularly because PCPs and hematologists are the primary healthcare providers for children with SCD in the United States. Future studies should explore caregiver perspectives related to developmental screening. This study focused on self-reported data to gauge awareness and implementation of developmental screening. Self-reported data is susceptible to social desirability bias,⁴³ however we feel this risk was minimized.

In summary, this study describes the evolving landscape of developmental screening for young children with SCD among PCPs and hematologists. The most used developmental screening measures are insufficient for identifying delays in SCD and ensuring that children get necessary intervention services early in life that could lead to greater academic achievement and community participation. The findings from this study indicate a need for multilevel interventions to support developmental screening with both PCPs and hematologists, caregivers, and the referral process.

Abbreviations

AAP

American Academy of Pediatrics

ASH

American Society of Hematology

ASQ

Ages and Stages Questionnaire

COREQ

Consolidated Criteria for Reporting Qualitative Research Checklist

EPIS

Exploration, Preparation, Implementation, Sustainment

MCHAT

Modified Checklist for Autism in Toddlers

PCP

Primary Care Provider

REDCap

Research Electronic Data Capture

SCD

Sickle Cell Disease