Levels of Evidence Table

https://doi.org/10.1177/0009922817701174

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Article

As more pediatric providers take on the task of univer- sal developmental screening, it is important to remem- ber that the ultimate goal of these programs is not only to screen more children but also to link more children who may have developmental delays with evaluation and services. Nationally the percentage of pediatric practices that report using a standardized developmen- tal screen has risen from 23%1 to between 47% and 60%.1,2 Unfortunately, studies of referrals for early intervention (EI) evaluation have shown that 60% to 80% of referred children do not complete an evalua- tion.3-5 This compares unfavorably with the 30% of pediatric specialist referrals that are never completed6 and up to 50% of children referred to mental health services that never receive care.7 Given that providers often have difficulties tracking referrals and are fre- quently unfamiliar with the referral process itself, there are few second chances to address developmen- tal delays when a first opportunity is missed.8,9 If pedi- atric providers are to successfully screen and link children, research is clearly needed to determine where the process fails, starting with the provider talk- ing to a family about a child’s possible developmental delay and ending with the EI program communicating its findings back to the provider.

A small number of qualitative studies with parents have examined their interactions with providers and the question of why they may not follow-up with a recom- mended EI or other specialty evaluation.10-13 In these studies, the following factors were found to contribute to lack of follow-through with an evaluation: provider’s inability to endorse or describe the EI process; providers using a reassuring approach that led parents to assume their child did not really need further evaluation despite the referral; a non-reassuring or alarmist tone that dis- couraged parental involvement; and failure of the pro- vider to follow-up. Unspoken fear, shame, and apprehension about the evaluation caused some parents to exaggerate their child’s development in one study,12 and negative experiences with community-based resources were found among low-income parents in another.11 EI employees assumed that many parents feared that EI was related to child protective services in

701174 CPJXXX10.1177/0009922817701174Clinical PediatricsMoore et al research-article2017

1University of Colorado Health, Denver, CO, USA 2Children’s Hospital Los Angeles, Los Angeles, CA, USA

Corresponding Author: Christopher Moore, University of Colorado Health, 5881 West 16th St, Greeley, CO 80631, USA. Email: [email protected]

Developmental Screening and Referrals: Assessing the Influence of Provider Specialty, Training, and Interagency Communication

Christopher Moore, MD1, Irina Zamora, PsyD2, Mona Patel Gera, MD, FAAP2, and Marian E. Williams, PhD2

Abstract Previous studies have shown that different provider approaches, amount of familiarity with the referral and screening process, and level of interagency communication can increase or decrease the likelihood of caregivers completing a recommended referral to early intervention (EI). We surveyed 60 family practitioners and pediatricians at 2 primary care clinics to assess these factors. Pediatricians were more likely than family practitioners to report using, evaluating, and discussing the results of developmental screens. Providers with more experience and recent training expressed more confidence in their ability to describe the EI system to families. Most providers expressed a lack of confidence in their own agency to complete referrals or EI to provide follow-up. The knowledge gaps and communication problems identified in this study could serve as a basis for future interventional work.

Keywords development screening, early intervention, family practitioner, provider communication

Moore et al 1041

a third study,10 but only one of the interviewed parents asserted such fears.

A larger number of studies has examined the barriers perceived by providers to making and pursuing a refer- ral.3,5,14-17 A lack of knowledge about the EI system was consistently identified as a barrier. In addition, some providers did not trust the accuracy of the developmen- tal screens or parent input and preferred to rely on their clinical judgement. Last, the question of potential harm with universal screening has gone largely unasked in the literature.18 If providers believe a false positive develop- mental screen could be harmful to patients or families, they might be less willing to make a referral.

This study presents findings from a pediatric pro- vider survey about developmental screening practices and the process of referral to EI. We hypothesized that (1) pediatricians (compared to family practice physi- cians) and (2) providers with recent training or experi- ence using screening measures (compared to those without such experience) would be more likely to use developmental screening measures, to report confidence in discussing abnormal screening results with parents, and to report approaches that encourage families to fol- low-through with the referral process. We hypothesized that malleable attributes (such as confidence in office procedures and EI follow-up, a belief that the screening tools were accurate and evaluations would not be harm- ful, knowledge of the EI system, and confidence in dis- cussing screening results with families) would be correlated with clinical approaches that would encour- age families to go through with the referral process.

Methods

Participants

Pediatric care providers working at 2 federally qualified health centers (FQHCs) serving Medicaid-insured patients in urban Los Angeles were surveyed. One of the FQHCs included 2 sites: one based in a community practice that served both adults and children and the other based in an academically affiliated children’s hos- pital. Both FQHCs were participating in a grant-funded project designed to increase the number of developmen- tal screenings and linkage to community resources. Eligible participants included pediatric providers at the 2 sites who reported routinely providing services to chil- dren under age 6.

Measure

The provider survey was developed for this study and consisted of 20 questions (available on request) in the

following domains: (1) provider background: profes- sional discipline/job role, past education and training in developmental screening, and personal experience with a child diagnosed with a developmental disability; (2) screening practices: current use of developmental screening measures when providing medical care to young children, and roles related to screening process; (3) confidence (using Likert-type scale): degree of con- fidence in their agency’s office procedures, confidence in the EI system’s procedures for follow-up, their own knowledge of the EI referral system, and their confi- dence in discussing screening results with parents; (4) opinions (using Likert-type scale): their own opinions about the accuracy of screening measures, and how to clinically approach abnormal screens; and (5) harm in screening (using Likert-type scale): provider percep- tions of potential harm in screening or concerns of par- ents about screening involving Child Protective Services or the immigration system. These domains and specific questions were developed through the literature review as well as interviews with providers at a fourth site that was not included in the final survey. The intent of the survey was to focus on established barriers to referrals from the providers’ perspective as well as providers’ knowledge or perceptions of barriers from the families’ perspective. The aim was to correlate knowledge or per- ceptions that could be altered with training with clinical approaches that have been shown in other studies to be conducive to completing referrals to EI.

Procedures

An electronic version of the survey was sent via email to 71 providers at one of the sites; 6 surveys were com- pleted for a response rate of 8%. A paper version of the survey was distributed in person at 4 meetings across the 3 sites. Providers were reminded about the emailed request at the beginning of the survey and asked not to fill out the survey if they had already done so. At 2 department meetings, out of 65 attendees, 34 completed the survey (52%). At 2 provider trainings focused on developmental screening, out of 20 attendees, 20 com- pleted the survey (100%). The total number of surveys completed by providers was 60, for an overall response rate of 38.5%. It is possible that some of the nonrespon- dents did not complete the survey because they deter- mined they were not eligible; the first question asked if they provided primary care to children younger than 6 years, and if the answer was no, they were instructed not to complete the survey. Informed consent was obtained at the time of survey completion. The study was approved by the institutional review board at the authors’ institution.

1042 Clinical Pediatrics 56(11)

Data Analysis

Descriptive statistics were used to summarize responses to the survey. Chi-square analyses were performed to compare training and screening practices by provider type and by agency. When comparing responses by pro- vider type, providers were grouped into pediatricians and family practice physicians; pediatric residents and nurse practitioners were removed from these analyses because there were insufficient numbers to make mean- ingful comparisons. Pearson correlations were com- puted to examine the relationship between responses to different Likert-type survey items.

Results

Of the 60 respondents, 34 (57%) were pediatricians, 16 (27%) were family practitioners, 7 (12%) were pediatric residents, and 3 (5%) were nurse practitioners. Respondents were fairly evenly represented among the agencies with 16 (27%) practicing at one community site, 20 (33%) at the other community site, and 24 (40%) at the children’s hospital site. Table 1 provides a sum- mary of providers’ responses to survey items.

Professional Training and Screening Practices

As detailed in Table 1, the majority of providers reported having been trained in developmental screening during medical or professional education, but less than half reported that they had received any developmental screening training in the previous 5 years. Almost all providers said they always or often used developmental screens for children under 5 years old, and often or always used a formal, standardized screening tool. However, when asked what specific roles related to developmental screening they had participated in dur- ing the past 6 months, many providers reported they had not interpreted screening results, reviewed screen- ing results with parents, nor made referrals for further assessment. There were no differences in developmen- tal screening training or reported use of screening tools between agencies. However, pediatricians were more likely than family practice physicians to report that they “always” use developmental screens with young chil- dren (79% vs 44%; χ2[1, N = 50] = 6.359, P = .012, ϕ = .357) and that within the past 6 months, they had inter- preted results of screening tools (94% vs 69%; Fisher exact test = .027; Cramer’s V = .341); reviewed screen- ing results with parents (94% vs 56%; Fisher exact test = .003; Cramer’s V = .460); and referred children for further assessment (97% vs 63%; Fisher exact test = .003; Cramer’s V = .465).

Confidence in Discussing Screening Results and Explaining the EI System

To identify factors that might be related to providers’ ability to effectively communicate with parents about screening results, the participants were divided into 2 groups for χ2 analyses: (1) providers (n = 29; 48%) who reported high levels of confidence and comfort in their skills in both discussing abnormal screening results with parents and explaining the process for seeking an EI evaluation (Likert-type scale ratings of 4 or 5 on the 5-point scale) and (2) providers (n = 31; 52%) who reported low levels of confidence on one or both of those skills. There was no difference between these 2 groups in terms of type of provider (pediatrician or fam- ily practice physician), agency, dedicated training in developmental screening during their professional edu- cation, or personal experience with a child with a devel- opmental disability. However, recent provider experience and training did predict greater confidence in their skills: providers who had training in developmental screening within the past 5 years were more likely to be confident in discussing results and explaining the EI system to parents than those without recent training (χ2[1, N = 60] = 5.384, P = .02, ϕ = .30). In addition, providers who reported that they had reviewed results of screening with parents within the past 6 months were more likely to be confident in their skills (χ2[1, N = 60] = 11.226, P = .001, ϕ = .433).

Confidence in Office Procedures, EI System Processes, and Screening Measures

As shown in Table 1, most providers were not confident that their office/agency would handle the paperwork needed to complete a referral to EI, and very few were confident that if a parent decided to “wait and see” after an abnormal screen, their child would be screened again at their next visit to the agency. Very few providers were confident that the EI system would provide them with feedback about the outcome of a referral. When asked about the accuracy of screening measures, 15% felt they underestimated the presence of developmental delay; 28% felt they overestimated delays, 50% of providers felt that the measures were accurate, and 7% had no opinion. Finally, 17% of providers felt that a referral to EI was harmful in situations where the child turned out not to have a developmental delay.

Provider Opinions and Approaches

Table 2 shows correlations between office and provider attributes that could be addressed with training or

Moore et al 1043

Table 1. Provider Responses to Survey Items.

Survey Item

Total (Pediatricians, Family Practice Physicians, Nurse Practitioners, and Medical

Residents) (N = 60) Pediatricians

(n = 34)

Family Practice

Physicians (n = 16)

Difference Between Pediatricians and Family Practice

Physicians

Provider training/experience Training on developmental screening in professional

education 52 (87%) 31 (93%) 12 (75%) n.s.

Training on developmental screening in past 5 years 24 (40%) 16 (47%) 5 (31%) n.s. Friend or family member has child with developmental

delay/disability 36 (60%) 24 (71%) 11 (69%) n.s.

Provider practices Always conduct developmental screening 40 (67%) 27 (79%) 7 (44%) P = .012 Always use formal screening tool 35 (58%) 20 (59%) 6 (38%) n.s. Provider roles in developmental screening in past 6 months Help parents complete developmental screening 41 (68%) 28 (82%) 6 (38%) P = .002 Score developmental screening measure 42 (70%) 25 (74%) 10 (63%) n.s. Interpret screening scores 50 (83%) 32 (94%) 11 (69%) P = .016 Review screening results with parents 48 (80%) 32 (94%) 9 (56%) P = .001 Provide written information about development to

parents 40 (67%) 27 (79%) 6 (38%) P = .004

Refer families to early intervention services 49 (82%) 33 (97%) 10 (62.5%) P = .001 None of the above roles 5 (8%) 1 (3%) 3 (19%) n.s. All of the above roles 32 (53%) 22 (65%) 3 (19%) P = .002 Provider comfort/confidence Comfortable discussing abnormal developmental

screening results with families 45 (75%) 29 (85%) 11 (69%) n.s.

Confident explaining to families the process for starting EI services

30 (50%) 23 (68%) 5 (31%) P = .016

Confident children whose parents decide to “wait and see” will be rescreened at the next visit to my agency

11 (18%) 6 (18%) 3 (19%) n.s.

Confident my agency will take care of the necessary paperwork and follow up

19 (32%) 8 (24%) 7 (44%) n.s.

Confident I will receive follow up information from EI services regarding the children I refer

6 (10%) 2 (6%) 2 (13%) n.s.

Provider beliefs Agree it is OK for a family to take a “wait and see”

approach when a developmental screen is abnormal 13 (22%) 6 (18%) 6 (38%) n.s.

Agree there is little that can be done to change a family’s mind if they chose not to have an evaluation

5 (9%) 3 (9%) 1 (6%) n.s.

Agree that they take a reassuring approach when talking with families about abnormal screens

32 (53%) 14 (41%) 12 (75%) P = .026

Expression of parental fears Families rarely or never express concerns that

EI involves immigration services or the risk of deportation

44 (74%) 24 (71%) 12 (75%) n.s.

Families rarely or never express concerns that EI involves Child Protective Services

46 (77%) 28 (82%) 11 (69%) n.s.

Families rarely or never express guilt or blame for their child’s delayed development

22 (36%) 11 (32%) 6 (38%) n.s.

Accuracy of screens Believe that standardized developmental screens are

usually accurate 30 (50%) 16 (47%) 8 (50%) n.s.

Harm caused by unnecessary referral Believe a family is helped by an EI evaluation even if it

does not confirm a developmental delay 32 (54%) 18 (53%) 9 (56%) n.s.

Abbreviation: EI, early intervention. aData are presented as n (%).

1044 Clinical Pediatrics 56(11)

policy changes, and approaches that providers are likely to use when addressing an abnormal screen with a fam- ily. T tests were used to compare provider types (pedia- trician and family practice physician) for each of the questions in Table 2, and no differences were found. Provider training and specialty were therefore unlikely to explain the significant correlations between clinical approaches and agency attributes or knowledge base. In addition, t tests were used to compare providers who had high versus lower levels of confidence in discuss- ing screening results with parents and explaining the EI system, and no differences were found between these 2 groups on the questions in Table 2. Significant correla- tions that could direct provider training included the following. Providers who were able to describe the EI referral process were more comfortable discussing abnormal screens with families. Also, providers who were more confident that they would receive follow up from EI tended to believe that an unnecessary referral was more helpful than harmful.

Discussion

This study surveyed pediatric and family medicine pri- mary providers serving low-income, urban children, to learn about their practices and views related to develop- mental screening with young children in their care. Almost all providers reported conducting developmen- tal screening using formal tools. This compares very

well to recent studies showing that 47% to 60% of sur- veyed pediatricians used formal developmental screen- ing tools.1,2 However, when asked about specific roles within the past 6 months, many providers had not inter- preted screening tools, discussed screening results with parents, nor referred children for further assessment. Since the American Academy of Pediatrics (AAP) guidelines recommend universal developmental screen- ing, there may be a substantial push for providers to respond that they follow this guideline; however, asking more specific questions about roles and procedures fol- lowed may lead to more accurate information about actual screening practices. It is likely that responses to specific questions about screening interpretation, dis- cussion, and referral reflect the actual rate of screening in the study sites. In addition, it may be that providers mistake surveillance for screening, leading them to overreport their screening practices when asked more broadly. As predicted, pediatricians (compared to family practice physicians) were more likely to report that they consistently use developmental screening, and more likely to report that they have recently interpreted screening results, discussed results with parents, and referred children for further evaluation. This may reflect the fact that the AAP initiated the recommendation for screening and referral despite a lack of endorsement from the United States Preventive Services Task Force (USPSTF). The American Academy of Family Physicians, in contrast, has generally followed USPSTF

Table 2. Pearson Correlations between Survey Itemsa.

Survey Item 1 2 3 4 5 6 7

Provider approaches 1. Agree there is little that can be done to change a family’s

mind if they chose not to have an evaluation

2. Agree it is OK for a family to take a “wait and see” approach when a developmental screen is abnormal

0.319*

3. Agree that they take a reassuring approach when talking with families about abnormal screens

0.210 0.426**

4. Comfortable discussing abnormal developmental screening results with families

−0.010 −0.080 0.084

Agency attributes and knowledge base 5. More confident explaining to families the process for

starting EI services −0.286* −0.206 −0.140 0.349**

6. More confident my agency will take care of the necessary paperwork and follow-up

0.278* 0.191 0.203 0.082 −0.023

7. Confident I will receive follow up information from EI services regarding the children I refer

0.079 0.151 0.244 0.142 0.111 0.501**

8. Belief that a family is more helped than harmed by an unnecessary EI referral

−0.117 −0.052 −0.045 0.188 0.238 0.148 0.326*

Abbreviation: EI, early intervention. aN = 60, except N = 59 for Item 3. *P < .05. **P < .01.

Moore et al 1045

recommendations and has either refused to endorse or actively discouraged screening.19

Almost all providers reported receiving training on developmental screening during their professional edu- cation, but less than half had received training in the past 5 years. When examining comfort and confidence in dis- cussing abnormal results with parents and explaining the EI process to parents, only about half of providers were confident in their skills, and 30% of the surveyed pro- viders were somewhat to very uncomfortable discussing abnormal screens with families. Comfort is something that parents look for in their provider,10,12,13,20 and the ability to instill confidence in a family hinges on the ability to convey a clear and confident plan for follow- up.14 Without knowing what to expect and what recourse is available when the referral process stalls, a family is likely to give up.10,21-23 A lack of knowledge of the refer- ral process is a self-identified barrier to a provider mak- ing a referral in the first place.14 We found that confidence in being able to describe the referral system to families was associated with being more comfortable discussing an abnormal screen, and providers with recent training and experience discussing results with parents were sig- nificantly more likely to express confidence in their skills. Teaching providers the intricacies of the EI pro- cess presents an opportunity for improved patient com- munication, measureable as a quality metric, and has been done in prior studies.14 Effective training would have the added benefit of opening lines of communica- tion between providers and the referral centers, and per- haps addressing the lack of feedback from the EI system that providers reported. In our study, there were no dif- ferences between provider types in confidence in their skills, so training on-the-job or through continuing edu- cation appears to increase confidence regardless of the type of residency training.

Survey results indicated problems with the opera- tions of the service system. These problems included lack of confidence in one’s own agency completing the necessary paperwork to make a referral to EI following an abnormal screen, and lack of confidence that if a par- ent decided to “wait and see” following an abnormal screen, their child would be screened again at their next visit to the agency. Finally, only 10% of providers were confident that the EI system would provide follow-up information about children they referred. Studies have demonstrated that problems with referral tracking and follow up are large obstacles to effective screening and evaluation.5,16,17,24

When deciding whether to encourage families to seek further evaluation based on an abnormal screen, provid- ers consider potential harm incurred from a false posi- tive screening result. To date there is little vigorous

literature demonstrating lack of harm from the screening process and this lack of data is one of the reasons that universal screening has not been recommended by the USPSTF.18 In our survey, 17% of providers felt that a false positive referral was at least somewhat harmful, and the majority of providers reported that parents expe- rience guilt or blame regarding their child’s develop- mental delays. In addition, there was a correlation between confidence that EI would provide follow-up from the referral and feeling that a referral was more helpful than harmful. Some studies have found that fam- ilies express general appreciation for a referral even if their child did not qualify for services.25-27 Even if a child does not qualify for services, they may have some delays and may benefit from some type of interven- tion.10,28 A discussion of the state of the research during medical training in addition to teaching the intricacies of an EI referral and an understanding of parents’ perspec- tives might foster a more productive discussion with families.

The literature on how to most effectively communi- cate with a family in the context of a potential develop- mental delay is contradictory.10,12 Sices et al12 showed that many families need time and reassurance to accept the possibility of a developmental delay. But Jimenez et al4,10 found that patients who opted for a “wait and see” approach often misinterpreted the wait as a reason to not follow-up, especially if there was not active office follow-up. In our survey, 22% of providers reported they felt it was okay for a family to “wait and see” following an abnormal screen, though only 9% felt there was little they could do to change a family’s mind if they did not want to have an evaluation. Providers who were willing to take a more reassuring approach were also more likely to find “wait and see” an acceptable option to immediate referral. Allowing a parent time to consider while actively following up may be the best way to assure an eventual evaluation. Although a correlation between confidence in follow-up and the acceptance of a “wait and see” approach could not be demonstrated, the ques- tion merits further research because office systems are malleable and have an effect on providers’ practice.

It is even less clear whether providers should use a reassuring approach with a family when discussing an abnormal screen. About half the providers in our survey said that they would take a reassuring approach. Sices et al12 found that most but not all parents appreciated reassurances from their pediatrician when dealing with the news that their child might have a developmental delay and that it helped them face the news and move forward. Conversely, Jimenez et al10 showed that mis- understood reassurances were a reason for parents not following through on a recommended referral. We

1046 Clinical Pediatrics 56(11)

found a strong correlation between a willingness to accept both a "wait and see" approach and use a reas- suring tone, a combination that may lead to delays in getting children into EI. Training programs should make providers aware that there are advantages and pit- falls to both approaches and that they need to pay care- ful attention to how their words are being received in an emotionally charged situation. Practices should create the time and space to allow an open discussion, ques- tions, and education that encourage the parent to be part of the collaborative team that moves forward with the EI evaluation and treatment.13

There are several limitations in the present study. The patient population served by the surveyed providers was primarily low income, in an urban, culturally diverse setting. Therefore, some findings may not generalize to providers serving other populations. Although the over- all response rate was low, this was mainly due to the lack of response to the electronic/emailed survey. When pro- viders were approached in person during a staff meeting or training, the majority agreed to participate and com- plete the survey.

Conclusion

Although the pediatric providers we surveyed reported high levels of use of developmental screening tools and training in developmental screening during professional education, many were not comfortable discussing abnor- mal screening results with parents or explaining the EI system to parents. In addition, the providers reported a lack of confidence in their own agency’s procedures and in the EI system. Likely clinical approaches were identi- fied that could possibly discourage families from going through with a referral. Taken together these specific factors will need to be addressed with follow-up train- ing, based in part on the experience of families, and measured with respect to their impact on the percentage of families that complete a developmental evaluation.

Acknowledgments

The developmental screening project described in this study, Early Identification and Intervention—Autism and other Developmental Delays, known as First Connections, was funded by a grant from First 5 LA. Drs. Williams and Zamora were Principal Investigator and Project Director, respectively, for the Children’s Hospital Los Angeles Training and Technical Assistance team for the project; Dr. Patel Gera was Principal Investigator for the AltaMed/Children’s Hospital Los Angeles project site. This project was completed in partial fulfillment of the requirements of Dr. Moore’s participation in the California Leadership Education in Neurodevelopmental Disabilities (CA-LEND) Interdisciplinary Training Program. The authors acknowledge the assistance of Sheela Rao, MD,

MACM who provided mentoring to Dr. Moore through CA-LEND; Dr. Rao, Carolina Pena-Ricardo, MD, Barbara Y. Wheeler, PhD, and Marie Kanne Poulsen, PhD, for guidance with drafting the survey; Project Coordinator, Olawunmi Akinsilo, MS, for assistance with data entry; Sheree Schrager, PhD, MS, for assistance with study design and data presenta- tion; Eugene Nguyen, for assistance with data analysis; Mireya Romero, for assistance with data collection; and the providers at AltaMed, Children’s Hospital Los Angeles, and Eisner Pediatric Medical Center, who participated in the study. Finally, we would like to thank Christine Park, MD, MPH, CLE, FAAP, Debra Rosen, RN, MPH, and Cynthia Nair Jimenez, MPH, CLE, from Northeast Valley Health Corporation, who generously offered their time and insight concerning providers’ experience with the ASQ.

Author Contributions

CM performed the literature review, contributed to the survey instrument and data collection and drafted portions of the final paper. MEW contributed to the survey, drafted portions of the final paper and oversaw editing, data interpretation and sub- mission of the final manuscript. IZ contributed to the survey, data collection and editing of the final paper. MPG contributed to data collection and editing of the final paper.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial sup- port for the research, authorship, and/or publication of this article: The developmental screening project described in this study was funded by a grant from First 5 LA.

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