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Self-Perceived Autism Competency of Primary Care Nurse Practitioners
ORIGINAL RESEARCH
Self-Perceived Autism Competency of Primary Care Nurse Practitioners Denise Will, DNP, PMHNP-BC, Janet Barnfather, PhD, RN, and Marsha Lesley, PhD, MLIS
ABSTRACT The incidence of autism spectrum disorder (ASD) is increasing in children. Primary care providers lack training in managing patients with ASD. This study examined the self-perceived autism competency and barriers of 126 nurse practitioners (NPs) who provide primary care to patients under the age of 18. NPs reported a lack of self perceived competency (P < .05) and identified significant barriers to providing care to children with ASD compared to children with neurodevelopmental or medical conditions. Based on study results, education is needed to expand NPs’ knowledge that may improve the delivery of care to patients with ASD. Keywords: autism spectrum disorders, ASD, competency, nurse practitioners, primary care Ó 2013 Elsevier, Inc. All rights reserved.
A
utism spectrum disorders (ASD) are present from birth or very early in development and share 3 core features: delays in social interaction, impairments in language, and restricted and repetitive behaviors.1 Comorbidities can include but are not limited to sleep disorders, learning disabilities, epilepsy, gastrointestinal problems, motor impairments, and a variety of psychiatric conditions, such as aggression, depression, anxiety, and obsessivecompulsive disorders.1 Over the past decade, there has been a dramatic increase in the occurrence of ASD in the United States. According to the Centers for Disease Control and Prevention (CDC),2 the prevalence has been increasing steadily. In 2002, the rate was 1 in 150 children, and in 2008 (the most recent data) the rate of ASD was 1 in 88 children. The cause of this 78% increase is difficult to determine. The CDC attributes it in part to improved awareness and access to services but is unable to determine what percentage is from an actual increase in ASD incidence. The etiology of ASD is not certain, and our understanding is perpetually evolving. What we do know is that it is a highly inheritable condition with a recurrence rate of ASD in siblings of affected children that is 10-fold higher than in the general population.1 The term ASD includes the following conditions: autistic disorder, childhood disintegrative disorder, Asperger’s disorder, Rett’s disorder, and 350
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pervasive developmental disorder not otherwise specified (PDD-NOS). 3 The diagnostic criteria for each condition are different, but all exhibit deficiencies in 3 core areas: social delays, language impairments, and restrictive interests and repetitive behaviors.1 The variability of symptoms, a lack of lab test or specific clinical signs to confirm the diagnosis, and the absence of a definitive cause make diagnosis challenging. The medical care of children with special needs can be quite complex. When studying the quality of health care, it is necessary to consider the experiences and satisfaction of the patients who receive the care. Several studies have documented the frustration and dissatisfaction that parents of ASD children often experience with initial diagnosis and ongoing management of their child’s care.4-6 In 2001, the American Academy of Pediatrics (AAP) published its first guidelines for screening and managing children with ASD, which were later revised in 20077,8 and reaffirmed in 2010.9 The AAP suggests that at a minimum, the Modified Checklist for Autism in Toddlers be used to screen children for ASD when they are seen for their 18- and 24-month well child visits.7 Despite these recommendations, there seems to be little standardization of practice related to ASD screening. Concerns voiced by primary care providers (PCPs) that may impact their willingness to screen include demands on provider Volume 9, Issue 6, June 2013
time, lack of information regarding validated tools, or the belief that current screening practices are sufficient.10 Currently, no medications are available to treat the core deficits of ASD.11 There are very few medications approved by the Food and Drug Administration for use to treat self-injurious, aggressive, or oppositional behaviors, but they are useful only when used in conjunction with special education and behaviormodification programs.11 Parents must be counseled to consider using treatments that have been thoroughly tested in clinical trials. Of the behavioral interventions available, only applied behavioral analysis has been shown superior to other interventions.8 While numerous complementary and alternative medicine (CAM) treatments exist, none have been found to prevent or improve autism (avoidance of vaccinations, vitamin and mineral supplements, dietary changes, or secretin), and many have the potential to be harmful (chelation or antifungals).8 Based on CDC2 prevalence rates, a PCP could expect to see as many as 11 children with an ASD for every 1,000 children in his or her practice. Physicians who provide primary care have little training in managing patients with ASD.4,12 Because of their early and regular contact with these children, PCPs are ideally placed to identify those at risk for ASD and to refer children to another professional who is better prepared to make such a diagnosis. In many areas of the country, referral to an ASD specialist can be difficult because of extensive waiting lists, long distances that must be traveled for evaluation, or insurance issues. In this situation, the PCP may be required to provide a provisional diagnosis and begin treatment until resources become available. Several studies have documented physician uneasiness and lack of confidence in diagnosing and treating those with ASD.4,12 It is not clear if this perceived lack of competency is related to the rapid pace with which our insight into ASD is growing, a lack of resources available to the PCP, or simply a lack of education. Physician participants in the study done by Carbone et al4 recognized the mandate for early diagnosis but did not feel that they had adequate treatment and referral resources available, few saw themselves as a direct provider of comprehensive ASD care and found that coordination of care was difficult, www.npjournal.org
especially when it involved reimbursement. Other barriers included a lack of time, expertise, reimbursement, awareness of community resources, and availability of up-to-date knowledge on prescribing psychotropic medications, as well as CAM. Similar results were obtained in the study done by Golnik et al.12 Surveys were sent to a random sample of 3100 PCPs drawn from the American Medical Association Masterfile. Of the 359 responses received, 90% were pediatricians. Respondents reported a lower competency in providing primary care to children with ASD than those with other neurodevelopmental (ND) conditions, such as cerebral palsy or attention deficit disorder, and chronic/complex (CC) medical conditions, like asthma and diabetes. Most of the physicians who responded desired education regarding the use of CAM and identified several barriers to primary care for those with ASD, including lack of coordination of services, reimbursement issues, physician education, family skepticism of vaccines, and patients’ frequent use of CAM. It can be challenging to provide primary care to children with complex health care needs. There is no known research to date that examines the experiences, beliefs, and perceived competencies of nurse practitioners (NPs) who provide care for children with ASD. The purpose of this study was to examine how primary care NPs perceive their level of competency and what barriers they experience when providing primary care to children with ASD compared to children with ND and CC conditions. METHODS Participants
A convenience sample was obtained from nurse practitioners (NPs) attending a national NP conference held in June 2011. NPs who provide primary health care to patients under 18 years old were invited to participate. Throughout the 5-day conference, surveys were distributed to qualified and interested participants from a table set up in the main concourse of the convention area. Participants who returned a survey at the conference were invited to enter a drawing for a $100 Amazon.com gift certificate by providing their name and E-mail address. The certificate was E-mailed to the winner within 1 week of the conclusion of the conference. The Journal for Nurse Practitioners - JNP
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Ethical Issues
The risk associated with this study was determined to be minimal, and the institutional review board at a Midwestern university granted approval for the study on February 8, 2011. Completing and returning the survey constituted consent to participate. No identifying data were recorded on the survey.
Perceived Barriers. Nine questions measured the NPs’ perceived barriers to providing care to children with ASD, CC, and ND disorders. NPs identified “barriers that I experience when caring for these pediatric patients” from a list, including lack of care coordination, family skepticism of vaccines, lack of time during office visit, lack of provider education, and lack of practice guidelines.
Sample Size
Using data provided by the author of the original physician study,12 a power analysis was completed.13 Power calculations to estimate sample size were based on effect size of .409 with 90% power and a ¼ .05 to detect a difference in means of .437 between competency scores for ASD and CC groups. The power analysis indicated a need for 67 participants. Other calculations for sample size were based on effect size of .552 with 90% power and a ¼ .05 to detect a difference in means of .500 for ASD and ND groups. The analysis indicated 37 participants. Study Instrument
A self-report survey developed by Golnik et al12 for their physician study was used, with permission of the author, to obtain data for measures of self-perceived competency and barriers to providing care for patients with ASD, CC, and ND disorders. CC medical conditions include congenital heart disease, chronic asthma, early cystic fibrosis, and diabetes. ND conditions include hypoxic ischemic encephalopathy, cerebral palsy, mental retardation, and attention deficit hyperactivity disorder. The only modification to the original tool was made to the demographic questions to reflect NP education and practice. The competency and barrier questions remained unchanged. Competency. The tool contained 4 questions that were used to measure the NPs’ self-perceived ASD competency. These questions asked participants to respond using a Likert scale from 1 (strongly disagree) and 7 (strongly agree). Questions included their perceived capacity to provide primary care to children with ASD, CC, and ND; the availability of resources to answer questions of patients and family of children with these conditions, patient and family trust of the NP, and patient and family satisfaction with the care provided. Scores for these 4 questions were combined into an overall competency score. 352
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Analysis
Data were analyzed using SPSS version 19 (IBM, Armonk, NY). Descriptive statistics were used to examine the demographic data. Data were analyzed using a paired t-test to compare the competency scores when caring for patients with ASD, CC, or ND disorders. McNemar’s test was used to determine perceived barriers to care. Values with a P < 0.05 (2tailed) were considered statistically significant. RESULTS Demographics
Responses totaled 126. Most participants were family NPs (n ¼ 106, 84%). Other specialties included pediatric NPs (n ¼ 15, 11.9%), and adult NPs (n ¼ 2, 1.6%); 1 participant identified his or her certification as “other” (0.8%). Study participants were overwhelmingly female (n ¼ 117, 92.9%) and reported their highest level of education as master of science in nursing (n ¼ 108, 85.7%). Their average years in practice were 9 years (SD 7.2) and the mean age of respondents was 48 years (SD ¼ 7.2). Self-Perceived Competency
Perceptions regarding respondent competency are summarized in Table 1. NPs rated their competency significantly lower when providing primary care to children with ASD than their competency providing care to children with CC conditions. However, there was no significant difference in the overall competency scores between caring for children with ASD and children with ND conditions. By combining the scores from the 4 competency components (capacity, resources, trust, and satisfaction), an overall competency score was obtained. The NP score was 4.75 (SD 1.18). The Cronbach’s a for the overall competency scale was 0.79. Volume 9, Issue 6, June 2013
Table 1. Competency Scale
Patients with Autism
Patients with Neurodevelopmental Conditions, Mean (SD)
I have the capacity to provide primary care for these pediatric patients (poor to excellent)
4.13 (1.48)
4.20 (1.42)
4.98 (1.25)a
I have the resources to answer a family’s questions related to a child’s condition (strongly disagree to strongly agree)
4.31 (1.66)
4.44 (1.60)
5.05 (1.46)a
Pediatric patients and their families trust me and will follow my instructions or advice (strongly disagree to strongly agree)
5.22 (1.37)
5.26 (1.34)
5.69 (1.00)a
Pediatric patients and their families are satisfied with the primary care I provide (strongly agree to strongly agree)
5.30 (1.27)
5.34 (1.28)
5.60 (1.10)a
Overall autism competency score (above 4 items combined)
4.75 (1.18)
4.84 (1.19)
5.35 (0.98)a
Items Rated on a 1-7 Likert scale
Patients with Chronic/ Complex Conditions, Mean (SD)
P < .05.
a
Perceived Barriers to Care
Of the 9 possible barriers to providing care to children with ASD, more than 65% of NPs identified that 5 items posed significant barriers to providing primary care for children with ASD (Table 2). For example, 79% reported that a lack of care coordination was a significant barrier compared to caring for children with CC conditions but not those with ND conditions. ASD Education
Using a Likert scale (1 ¼ never, 7 ¼ always), NPs rated their desire for more primary care education for pediatric patients with ASD; the score was 6.42 (SD 1.02). When questioned regarding the desire for more CAM training for these same patients, the response was 6.23 (SD 1.29). DISCUSSION
NPs, like their physician counterparts, rated their competency to provide primary care for children with ASD lower than for those with CC conditions. Unlike physicians, there was no statistically significant difference between NP competency when caring for children with ASD or ND conditions. The competency scales had acceptable reliability values for both NPs and physicians, making it reasonable to compare scores between physicians and NPs. The overall www.npjournal.org
autism competency score in the physician study was 4.92 (SD 1.16) and a was .86.12 The highest rated barriers to care were similar between both physicians and NPs. Both groups identified family skepticism of vaccines, lack of care coordination, and lack of time as the top 3 barriers, although each group ranked them differently. The statistically significant barriers most frequently identified by physicians included family is skeptical of vaccines (66%), lack of time (65%), lack of care coordination (60%), lack of reimbursement (60%), patients’ use of CAM (48%), and lack of practice guidelines (48%).12 It was not unexpected that that both NPs and physicians listed family skepticism of vaccines as a significant barrier to providing primary care for children with ASD. Since 1999, the autism community has voiced concerns there may be a link between vaccines that contain thimerosal and the development of ASD, even though a number of studies have failed to support this connection.14,15 NPs identified lack of provider education regarding ASD as 4th on the list of barriers, whereas physicians ranked it 8th, only slightly higher than the patients’ use of outside providers. Several studies4,12 have identified the need for further ASD education for pediatric health care professionals. In an effort to provide further provider education, the CDC has The Journal for Nurse Practitioners - JNP
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Table 2. Perceived Barriers to Care
Patients with Autism
Patients with Neurodevelopmental Conditions
Patients with Chronic/ Complex Conditions
Lack of care coordination
79%
75%
63%a
Family is skeptical of vaccines
73%
38%a
35%a
Lack of time during office visit
70%
d
61%
61%d
Lack of provider education about the disorder
68%
67%
47%a
Lack of practice guidelines
67%
55%c
42%a
Lack of reimbursement
50%
39%b
37%b
Patients frequent use of CAM
30%
22%d
20%d
Patients use of outside providers (specialists, therapists, chiropractors)
29%
21%c
26%
Family is skeptical of traditional medicine
24%
16%d
15%d
Barrier
P < .0001. P < .005. P < .01. d P < .05. a
b c
developed the Autism Case Training16 continuing education course for health professionals. It can be accessed free of charge on the CDC website. LIMITATIONS AND STRENGTHS
Although not all of the conference attendees qualified to participate in the study, with conference attendance of more than 5,000, the response rate was notably low. In addition, most study participants were family NPs, so a comparison between NP specialties is limited. This research examined NPs’ perceptions of their ability to provide care to children with ASD but did not examine the perceptions of families. Lastly, the questionnaire results were from a small convenience sample, so findings cannot be generalized to NPs beyond the study. However, this study is the first known to look at NP competency and perceived barriers toward caring for children with ASD in primary care. The survey was distributed and collected at a national conference, which allowed for time-limited data collection, minimized the perceived inconvenience to participants, and enable access to NPs from across the United States. Results from this study add important scientific knowledge for NP practice and can be used to expand the conversation concerning the need for further ASD training for NPs. Further study is 354
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needed. Future research could replicate and expand on study methods to include more participants and details about results of educational programs on ASD. Research that examines the parental perceptions to ASD care provide by NPs would also be of significance. Another area for further inquiry includes exploration of perceived barriers and competencies with an emphasis on pediatric NPs to determine if a disparity exists between pediatric specialists and their family NP counterparts. Since ASD is a lifelong condition, further research related to the care of adults on the spectrum would also add valuable knowledge. CONCLUSION
A number of studies have highlighted parental concerns about the delivery of primary care to their children with ASD and the lack of knowledge demonstrated by physician providers.4-6 This study revealed that the NP participants did not feel prepared to provide primary care for children with ASD. They also identified a number of barriers that impeded their ability to provide care to these children. NPs overwhelmingly expressed a desire for more education related to ASD and the use of CAM. One of the most interesting and unanticipated findings in this study was that participants reported a similar lack of perceived competency in caring for Volume 9, Issue 6, June 2013
children with ASD and other ND conditions. This may indicate a need to augment the education of NPs across a wide range of ND problems in addition to ASD. With health care reform and a shortage of primary care physicians, NPs are positioned to take on more primary care responsibility. NPs must be able to advocate on behalf these patients, refer appropriately, and collaborate with a multidisciplinary team. In order to do this successfully and cost-effectively, training programs and continuing education providers must afford NPs the preparation needed to provide competent, quality care and education to children with ASD and their families.
8. Myers S, Johnson C. Management of children with autism spectrum disorders. Pediatrics. 2007;120(5):1162-1182. 9. AAP Publications Retired and Reaffirmed. Pediatrics. 2010;126:e1622. 10. Barton M, Dumont-Mathieu T, Fein D. Screening young children for autism spectrum disorders in primary practice. J Autism Dev Disord. 2012;42:1165-1174. 11. Peckham C. The current state in autism—still tough to treat but encouraging progress. An expert interview with Fred R Volkmar, MD. http://www.medscape. com/viewarticle/720802. Accessed October 4, 2012. 12. Golnik A, Ireland M, Borowsky I. Medical homes for children with autism: a physician survey. Pediatrics. 2009;123:966-971. 13. O’Brien RG, Mullerm KE. Unified power analysis for t-tests through multivariate hypothesis. In: Edwards, ed. Applied Analysis of Variance in Behavioral Science. New York, NY: Marcel Dekker; 1993:297-344. 14. Price CS, Thompson WW, Goodson B, et al. Prenatal and infant exposure to thimerosal from vaccines and immunoglogins and risk of autism. Pediatrics. 2010;126(4):656-684. 15. Mrozek-Budsyn D, Kieltyka A, Majewska R. Lack of association between measles-mumps-rubella vaccination and autism in children: a case-control study. Pediatr Infect Dis J. 2010;29(5):397-400. 16. Centers for Disease Control and Prevention. Autism Case Training. http://www. cdc.gov/ncbddd/actearly/autism/index.html Accessed November 20, 2012.
References
All authors are affiliated with the University of Michigan in Flint. Denise Will, DNP, MSN, PMHNP-BC, is a psychiatric mental health nurse practitioner in Flint, MI, and a lecturer; she can be reached at dewill@umflint.edu. Janet Barnfather, PhD, RN, is an associate professor emerita in the department of nursing. Marsha Lesley, PhD, MLIS, BSN, is an assistant professor in the department of nursing. In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.
1. Carbone P, Farley M, Davis T. Primary care for children with autism. Am Fam Physician. 2010;81(4):453-460. 2. Centers for Disease Control & Prevention. Prevalence of Autism Spectrum Disorders-Autism, & Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR. 2012;61(3):1-24. 3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 2000. 4. Carbone P, Behl D, Azor V, Murphy N. The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. J Autism Dev Disord. 2010;40:317-324. 5. Sansosti F, Lavik K, Sansosti J. Family experiences through the autism process. Focus Autism Dev Disabil. 2012;27(2):81-92. 6. Kogan M, Strickland B, Blumberg S, Singh G, Perrin J, van Dyck P. A national profile of the health care experience and family impact of autism spectrum disorder among children in the United States, 2005 2006. Pediatrics. 2008;122(6):e1149-e1158. 7. Johnson C, Myers S. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183-1215.
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1555-4155/13/$ see front matter © 2013 Elsevier, Inc. All rights reserved. http://dx.doi.org/10.1016/j.nurpra.2013.02.016
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Self-Perceived Autism Competency of Primary Care Nurse Practitioners Denise Will, DNP, PMHNP-BC, Janet Barnfather, PhD, RN, and Marsha Lesley, PhD, MLIS
ABSTRACT The incidence of autism spectrum disorder (ASD) is increasing in children. Primary care providers lack training in managing patients with ASD. This study examined the self-perceived autism competency and barriers of 126 nurse practitioners (NPs) who provide primary care to patients under the age of 18. NPs reported a lack of self perceived competency (P < .05) and identified significant barriers to providing care to children with ASD compared to children with neurodevelopmental or medical conditions. Based on study results, education is needed to expand NPs’ knowledge that may improve the delivery of care to patients with ASD. Keywords: autism spectrum disorders, ASD, competency, nurse practitioners, primary care Ó 2013 Elsevier, Inc. All rights reserved.
A
utism spectrum disorders (ASD) are present from birth or very early in development and share 3 core features: delays in social interaction, impairments in language, and restricted and repetitive behaviors.1 Comorbidities can include but are not limited to sleep disorders, learning disabilities, epilepsy, gastrointestinal problems, motor impairments, and a variety of psychiatric conditions, such as aggression, depression, anxiety, and obsessivecompulsive disorders.1 Over the past decade, there has been a dramatic increase in the occurrence of ASD in the United States. According to the Centers for Disease Control and Prevention (CDC),2 the prevalence has been increasing steadily. In 2002, the rate was 1 in 150 children, and in 2008 (the most recent data) the rate of ASD was 1 in 88 children. The cause of this 78% increase is difficult to determine. The CDC attributes it in part to improved awareness and access to services but is unable to determine what percentage is from an actual increase in ASD incidence. The etiology of ASD is not certain, and our understanding is perpetually evolving. What we do know is that it is a highly inheritable condition with a recurrence rate of ASD in siblings of affected children that is 10-fold higher than in the general population.1 The term ASD includes the following conditions: autistic disorder, childhood disintegrative disorder, Asperger’s disorder, Rett’s disorder, and 350
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pervasive developmental disorder not otherwise specified (PDD-NOS). 3 The diagnostic criteria for each condition are different, but all exhibit deficiencies in 3 core areas: social delays, language impairments, and restrictive interests and repetitive behaviors.1 The variability of symptoms, a lack of lab test or specific clinical signs to confirm the diagnosis, and the absence of a definitive cause make diagnosis challenging. The medical care of children with special needs can be quite complex. When studying the quality of health care, it is necessary to consider the experiences and satisfaction of the patients who receive the care. Several studies have documented the frustration and dissatisfaction that parents of ASD children often experience with initial diagnosis and ongoing management of their child’s care.4-6 In 2001, the American Academy of Pediatrics (AAP) published its first guidelines for screening and managing children with ASD, which were later revised in 20077,8 and reaffirmed in 2010.9 The AAP suggests that at a minimum, the Modified Checklist for Autism in Toddlers be used to screen children for ASD when they are seen for their 18- and 24-month well child visits.7 Despite these recommendations, there seems to be little standardization of practice related to ASD screening. Concerns voiced by primary care providers (PCPs) that may impact their willingness to screen include demands on provider Volume 9, Issue 6, June 2013
time, lack of information regarding validated tools, or the belief that current screening practices are sufficient.10 Currently, no medications are available to treat the core deficits of ASD.11 There are very few medications approved by the Food and Drug Administration for use to treat self-injurious, aggressive, or oppositional behaviors, but they are useful only when used in conjunction with special education and behaviormodification programs.11 Parents must be counseled to consider using treatments that have been thoroughly tested in clinical trials. Of the behavioral interventions available, only applied behavioral analysis has been shown superior to other interventions.8 While numerous complementary and alternative medicine (CAM) treatments exist, none have been found to prevent or improve autism (avoidance of vaccinations, vitamin and mineral supplements, dietary changes, or secretin), and many have the potential to be harmful (chelation or antifungals).8 Based on CDC2 prevalence rates, a PCP could expect to see as many as 11 children with an ASD for every 1,000 children in his or her practice. Physicians who provide primary care have little training in managing patients with ASD.4,12 Because of their early and regular contact with these children, PCPs are ideally placed to identify those at risk for ASD and to refer children to another professional who is better prepared to make such a diagnosis. In many areas of the country, referral to an ASD specialist can be difficult because of extensive waiting lists, long distances that must be traveled for evaluation, or insurance issues. In this situation, the PCP may be required to provide a provisional diagnosis and begin treatment until resources become available. Several studies have documented physician uneasiness and lack of confidence in diagnosing and treating those with ASD.4,12 It is not clear if this perceived lack of competency is related to the rapid pace with which our insight into ASD is growing, a lack of resources available to the PCP, or simply a lack of education. Physician participants in the study done by Carbone et al4 recognized the mandate for early diagnosis but did not feel that they had adequate treatment and referral resources available, few saw themselves as a direct provider of comprehensive ASD care and found that coordination of care was difficult, www.npjournal.org
especially when it involved reimbursement. Other barriers included a lack of time, expertise, reimbursement, awareness of community resources, and availability of up-to-date knowledge on prescribing psychotropic medications, as well as CAM. Similar results were obtained in the study done by Golnik et al.12 Surveys were sent to a random sample of 3100 PCPs drawn from the American Medical Association Masterfile. Of the 359 responses received, 90% were pediatricians. Respondents reported a lower competency in providing primary care to children with ASD than those with other neurodevelopmental (ND) conditions, such as cerebral palsy or attention deficit disorder, and chronic/complex (CC) medical conditions, like asthma and diabetes. Most of the physicians who responded desired education regarding the use of CAM and identified several barriers to primary care for those with ASD, including lack of coordination of services, reimbursement issues, physician education, family skepticism of vaccines, and patients’ frequent use of CAM. It can be challenging to provide primary care to children with complex health care needs. There is no known research to date that examines the experiences, beliefs, and perceived competencies of nurse practitioners (NPs) who provide care for children with ASD. The purpose of this study was to examine how primary care NPs perceive their level of competency and what barriers they experience when providing primary care to children with ASD compared to children with ND and CC conditions. METHODS Participants
A convenience sample was obtained from nurse practitioners (NPs) attending a national NP conference held in June 2011. NPs who provide primary health care to patients under 18 years old were invited to participate. Throughout the 5-day conference, surveys were distributed to qualified and interested participants from a table set up in the main concourse of the convention area. Participants who returned a survey at the conference were invited to enter a drawing for a $100 Amazon.com gift certificate by providing their name and E-mail address. The certificate was E-mailed to the winner within 1 week of the conclusion of the conference. The Journal for Nurse Practitioners - JNP
351
Ethical Issues
The risk associated with this study was determined to be minimal, and the institutional review board at a Midwestern university granted approval for the study on February 8, 2011. Completing and returning the survey constituted consent to participate. No identifying data were recorded on the survey.
Perceived Barriers. Nine questions measured the NPs’ perceived barriers to providing care to children with ASD, CC, and ND disorders. NPs identified “barriers that I experience when caring for these pediatric patients” from a list, including lack of care coordination, family skepticism of vaccines, lack of time during office visit, lack of provider education, and lack of practice guidelines.
Sample Size
Using data provided by the author of the original physician study,12 a power analysis was completed.13 Power calculations to estimate sample size were based on effect size of .409 with 90% power and a ¼ .05 to detect a difference in means of .437 between competency scores for ASD and CC groups. The power analysis indicated a need for 67 participants. Other calculations for sample size were based on effect size of .552 with 90% power and a ¼ .05 to detect a difference in means of .500 for ASD and ND groups. The analysis indicated 37 participants. Study Instrument
A self-report survey developed by Golnik et al12 for their physician study was used, with permission of the author, to obtain data for measures of self-perceived competency and barriers to providing care for patients with ASD, CC, and ND disorders. CC medical conditions include congenital heart disease, chronic asthma, early cystic fibrosis, and diabetes. ND conditions include hypoxic ischemic encephalopathy, cerebral palsy, mental retardation, and attention deficit hyperactivity disorder. The only modification to the original tool was made to the demographic questions to reflect NP education and practice. The competency and barrier questions remained unchanged. Competency. The tool contained 4 questions that were used to measure the NPs’ self-perceived ASD competency. These questions asked participants to respond using a Likert scale from 1 (strongly disagree) and 7 (strongly agree). Questions included their perceived capacity to provide primary care to children with ASD, CC, and ND; the availability of resources to answer questions of patients and family of children with these conditions, patient and family trust of the NP, and patient and family satisfaction with the care provided. Scores for these 4 questions were combined into an overall competency score. 352
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Analysis
Data were analyzed using SPSS version 19 (IBM, Armonk, NY). Descriptive statistics were used to examine the demographic data. Data were analyzed using a paired t-test to compare the competency scores when caring for patients with ASD, CC, or ND disorders. McNemar’s test was used to determine perceived barriers to care. Values with a P < 0.05 (2tailed) were considered statistically significant. RESULTS Demographics
Responses totaled 126. Most participants were family NPs (n ¼ 106, 84%). Other specialties included pediatric NPs (n ¼ 15, 11.9%), and adult NPs (n ¼ 2, 1.6%); 1 participant identified his or her certification as “other” (0.8%). Study participants were overwhelmingly female (n ¼ 117, 92.9%) and reported their highest level of education as master of science in nursing (n ¼ 108, 85.7%). Their average years in practice were 9 years (SD 7.2) and the mean age of respondents was 48 years (SD ¼ 7.2). Self-Perceived Competency
Perceptions regarding respondent competency are summarized in Table 1. NPs rated their competency significantly lower when providing primary care to children with ASD than their competency providing care to children with CC conditions. However, there was no significant difference in the overall competency scores between caring for children with ASD and children with ND conditions. By combining the scores from the 4 competency components (capacity, resources, trust, and satisfaction), an overall competency score was obtained. The NP score was 4.75 (SD 1.18). The Cronbach’s a for the overall competency scale was 0.79. Volume 9, Issue 6, June 2013
Table 1. Competency Scale
Patients with Autism
Patients with Neurodevelopmental Conditions, Mean (SD)
I have the capacity to provide primary care for these pediatric patients (poor to excellent)
4.13 (1.48)
4.20 (1.42)
4.98 (1.25)a
I have the resources to answer a family’s questions related to a child’s condition (strongly disagree to strongly agree)
4.31 (1.66)
4.44 (1.60)
5.05 (1.46)a
Pediatric patients and their families trust me and will follow my instructions or advice (strongly disagree to strongly agree)
5.22 (1.37)
5.26 (1.34)
5.69 (1.00)a
Pediatric patients and their families are satisfied with the primary care I provide (strongly agree to strongly agree)
5.30 (1.27)
5.34 (1.28)
5.60 (1.10)a
Overall autism competency score (above 4 items combined)
4.75 (1.18)
4.84 (1.19)
5.35 (0.98)a
Items Rated on a 1-7 Likert scale
Patients with Chronic/ Complex Conditions, Mean (SD)
P < .05.
a
Perceived Barriers to Care
Of the 9 possible barriers to providing care to children with ASD, more than 65% of NPs identified that 5 items posed significant barriers to providing primary care for children with ASD (Table 2). For example, 79% reported that a lack of care coordination was a significant barrier compared to caring for children with CC conditions but not those with ND conditions. ASD Education
Using a Likert scale (1 ¼ never, 7 ¼ always), NPs rated their desire for more primary care education for pediatric patients with ASD; the score was 6.42 (SD 1.02). When questioned regarding the desire for more CAM training for these same patients, the response was 6.23 (SD 1.29). DISCUSSION
NPs, like their physician counterparts, rated their competency to provide primary care for children with ASD lower than for those with CC conditions. Unlike physicians, there was no statistically significant difference between NP competency when caring for children with ASD or ND conditions. The competency scales had acceptable reliability values for both NPs and physicians, making it reasonable to compare scores between physicians and NPs. The overall www.npjournal.org
autism competency score in the physician study was 4.92 (SD 1.16) and a was .86.12 The highest rated barriers to care were similar between both physicians and NPs. Both groups identified family skepticism of vaccines, lack of care coordination, and lack of time as the top 3 barriers, although each group ranked them differently. The statistically significant barriers most frequently identified by physicians included family is skeptical of vaccines (66%), lack of time (65%), lack of care coordination (60%), lack of reimbursement (60%), patients’ use of CAM (48%), and lack of practice guidelines (48%).12 It was not unexpected that that both NPs and physicians listed family skepticism of vaccines as a significant barrier to providing primary care for children with ASD. Since 1999, the autism community has voiced concerns there may be a link between vaccines that contain thimerosal and the development of ASD, even though a number of studies have failed to support this connection.14,15 NPs identified lack of provider education regarding ASD as 4th on the list of barriers, whereas physicians ranked it 8th, only slightly higher than the patients’ use of outside providers. Several studies4,12 have identified the need for further ASD education for pediatric health care professionals. In an effort to provide further provider education, the CDC has The Journal for Nurse Practitioners - JNP
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Table 2. Perceived Barriers to Care
Patients with Autism
Patients with Neurodevelopmental Conditions
Patients with Chronic/ Complex Conditions
Lack of care coordination
79%
75%
63%a
Family is skeptical of vaccines
73%
38%a
35%a
Lack of time during office visit
70%
d
61%
61%d
Lack of provider education about the disorder
68%
67%
47%a
Lack of practice guidelines
67%
55%c
42%a
Lack of reimbursement
50%
39%b
37%b
Patients frequent use of CAM
30%
22%d
20%d
Patients use of outside providers (specialists, therapists, chiropractors)
29%
21%c
26%
Family is skeptical of traditional medicine
24%
16%d
15%d
Barrier
P < .0001. P < .005. P < .01. d P < .05. a
b c
developed the Autism Case Training16 continuing education course for health professionals. It can be accessed free of charge on the CDC website. LIMITATIONS AND STRENGTHS
Although not all of the conference attendees qualified to participate in the study, with conference attendance of more than 5,000, the response rate was notably low. In addition, most study participants were family NPs, so a comparison between NP specialties is limited. This research examined NPs’ perceptions of their ability to provide care to children with ASD but did not examine the perceptions of families. Lastly, the questionnaire results were from a small convenience sample, so findings cannot be generalized to NPs beyond the study. However, this study is the first known to look at NP competency and perceived barriers toward caring for children with ASD in primary care. The survey was distributed and collected at a national conference, which allowed for time-limited data collection, minimized the perceived inconvenience to participants, and enable access to NPs from across the United States. Results from this study add important scientific knowledge for NP practice and can be used to expand the conversation concerning the need for further ASD training for NPs. Further study is 354
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needed. Future research could replicate and expand on study methods to include more participants and details about results of educational programs on ASD. Research that examines the parental perceptions to ASD care provide by NPs would also be of significance. Another area for further inquiry includes exploration of perceived barriers and competencies with an emphasis on pediatric NPs to determine if a disparity exists between pediatric specialists and their family NP counterparts. Since ASD is a lifelong condition, further research related to the care of adults on the spectrum would also add valuable knowledge. CONCLUSION
A number of studies have highlighted parental concerns about the delivery of primary care to their children with ASD and the lack of knowledge demonstrated by physician providers.4-6 This study revealed that the NP participants did not feel prepared to provide primary care for children with ASD. They also identified a number of barriers that impeded their ability to provide care to these children. NPs overwhelmingly expressed a desire for more education related to ASD and the use of CAM. One of the most interesting and unanticipated findings in this study was that participants reported a similar lack of perceived competency in caring for Volume 9, Issue 6, June 2013
children with ASD and other ND conditions. This may indicate a need to augment the education of NPs across a wide range of ND problems in addition to ASD. With health care reform and a shortage of primary care physicians, NPs are positioned to take on more primary care responsibility. NPs must be able to advocate on behalf these patients, refer appropriately, and collaborate with a multidisciplinary team. In order to do this successfully and cost-effectively, training programs and continuing education providers must afford NPs the preparation needed to provide competent, quality care and education to children with ASD and their families.
8. Myers S, Johnson C. Management of children with autism spectrum disorders. Pediatrics. 2007;120(5):1162-1182. 9. AAP Publications Retired and Reaffirmed. Pediatrics. 2010;126:e1622. 10. Barton M, Dumont-Mathieu T, Fein D. Screening young children for autism spectrum disorders in primary practice. J Autism Dev Disord. 2012;42:1165-1174. 11. Peckham C. The current state in autism—still tough to treat but encouraging progress. An expert interview with Fred R Volkmar, MD. http://www.medscape. com/viewarticle/720802. Accessed October 4, 2012. 12. Golnik A, Ireland M, Borowsky I. Medical homes for children with autism: a physician survey. Pediatrics. 2009;123:966-971. 13. O’Brien RG, Mullerm KE. Unified power analysis for t-tests through multivariate hypothesis. In: Edwards, ed. Applied Analysis of Variance in Behavioral Science. New York, NY: Marcel Dekker; 1993:297-344. 14. Price CS, Thompson WW, Goodson B, et al. Prenatal and infant exposure to thimerosal from vaccines and immunoglogins and risk of autism. Pediatrics. 2010;126(4):656-684. 15. Mrozek-Budsyn D, Kieltyka A, Majewska R. Lack of association between measles-mumps-rubella vaccination and autism in children: a case-control study. Pediatr Infect Dis J. 2010;29(5):397-400. 16. Centers for Disease Control and Prevention. Autism Case Training. http://www. cdc.gov/ncbddd/actearly/autism/index.html Accessed November 20, 2012.
References
All authors are affiliated with the University of Michigan in Flint. Denise Will, DNP, MSN, PMHNP-BC, is a psychiatric mental health nurse practitioner in Flint, MI, and a lecturer; she can be reached at dewill@umflint.edu. Janet Barnfather, PhD, RN, is an associate professor emerita in the department of nursing. Marsha Lesley, PhD, MLIS, BSN, is an assistant professor in the department of nursing. In compliance with national ethical guidelines, the authors report no relationships with business or industry that would pose a conflict of interest.
1. Carbone P, Farley M, Davis T. Primary care for children with autism. Am Fam Physician. 2010;81(4):453-460. 2. Centers for Disease Control & Prevention. Prevalence of Autism Spectrum Disorders-Autism, & Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR. 2012;61(3):1-24. 3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Association; 2000. 4. Carbone P, Behl D, Azor V, Murphy N. The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. J Autism Dev Disord. 2010;40:317-324. 5. Sansosti F, Lavik K, Sansosti J. Family experiences through the autism process. Focus Autism Dev Disabil. 2012;27(2):81-92. 6. Kogan M, Strickland B, Blumberg S, Singh G, Perrin J, van Dyck P. A national profile of the health care experience and family impact of autism spectrum disorder among children in the United States, 2005 2006. Pediatrics. 2008;122(6):e1149-e1158. 7. Johnson C, Myers S. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183-1215.
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