Impact of Child Psychiatry Access Programs on Mental Health Care in Pediatric Primary Care: Measuring the Parent Experience

Although 50% of all cases of mental illness start before the age of 14 (1), only one-third to one-half of children and adolescents with serious mental illness receive treatment (2) for what can be a debilitating condition. Pediatricians and other primary care providers (PCPs)—not psychiatrists—are often the clinicians who identify and treat mental health needs of their patients (3, 4). In fact, visits to nonpsychiatric physicians for mental health care of youths, including visits that result in prescription of a new psychotropic medication, are increasing at a significantly higher rate than visits to psychiatrists (5). In part, this trend is due to the lack of access to specialized mental health care and the well-documented national shortage of child and adolescent psychiatrists (6–8). However, even when services are available and referrals to mental health specialists are made, many families do not follow through with the referral for a variety of reasons, including stigma and financial and logistical barriers (9, 10).

Despite the vital role that PCPs play in the delivery of pediatric mental health care, they vary in their comfort to diagnose and treat mental health issues of children (9). Although most pediatricians report feeling comfortable with the assessment and treatment of attention-deficit hyperactivity disorder, confidence and desire to manage other psychiatric conditions common to children and adolescents is reported to be much lower (3, 11, 12).

Child psychiatry access programs (CPAPs) are state-specific, publicly funded programs established to increase access to high-quality pediatric mental health care services by supporting PCPs in their role as mental health providers through telephone and occasional in-person clinical consultations and through coordination of care (13). A previous study showed moderate to high parental satisfaction with the overall services provided by the Massachusetts Child Psychiatry Access Program (MCPAP) (14). However, no study has specifically explored parents’ perceptions of their child’s PCP and of the PCP’s management of their child’s mental health care after CPAP consultation. Given CPAPs’ primary objective of empowering PCPs as mental health providers (13), it is important to better understand parental perception of and satisfaction with PCPs who fill that role.

In this secondary exploratory analysis, our objective was to assess parents’ satisfaction with the role of the PCP in the treatment of their child’s mental health problems after their PCP consulted MCPAP. We also studied how parental satisfaction may vary across factors such as service utilization, parental perception of the child’s illness, and parental perception of certain PCP attributes.

Methods

Study Procedures

This cross-sectional study was approved by the institutional review board of Baystate Medical Center. Using the Baystate MCPAP database, the research team sampled 1,046 consecutive initial telephone consultations made from PCPs to the Baystate Medical Center MCPAP team between March 2010 and June 2012. A letter providing information about the study was mailed to the parent or guardian of the child discussed in the consultation. A scripted telephone survey was then administered to the parent or guardian by a member of the research staff. Parents and guardians were told that they could refuse to participate in the survey and could decline to answer any of the questions without their child’s care being affected. Surveys took 5–10 minutes to complete. Surveys involving patients whose PCP used only MCPAP case coordination services were excluded from this analysis.

Measures

Our primary outcome of interest was parents’ satisfaction with the role of the PCP in the treatment of their child’s mental health problems. The survey asked, “Please rate your overall satisfaction with your child’s primary care provider’s role in helping your child with a mental health problem,” and responses were measured with a 7-point Likert scale (1, not satisfied; 4 somewhat satisfied; 7, very satisfied). The sample was subsequently dichotomized as “not satisfied” for responses 1–5 and “satisfied” for responses 6–7. We restricted this question to participants who indicated that PCPs were still involved in their child's care.

Participants were asked whether their PCP referred them to each of the services identified on a predefined list and if so, whether the service had been scheduled. If no service had been scheduled, the reasons for this outcome were elicited. Mutually exclusive categories of referral and subsequent uptake (e.g., referred and scheduled, referred and not interested, etc.) were created for each service on the list.

Parents’ perceptions of their child's illness level were assessed with the following measures: awareness that their PCP called MCPAP for advice in helping with their child’s issue (yes or no); duration of the problem prior to contacting their PCP (<3 months, 3–6 months, 6–12 months, >1 year); degree of improvement in their child’s behavioral health condition since the MCPAP service date (measured on a 7-point Likert scale ranging from 1, not at all, to 7, very much; responses were subsequently categorized as 1–2, not at all; 3–5, somewhat; and 6–7, very much); and severity of their child’s mental health problems (measured on a 7-point scale ranging from 1, not severe, to 7, very severe; responses were subsequently categorized as 1–2, not severe; 3–5, moderate severity; and 6–7, very severe).

Finally, to measure parents’ perceptions of certain attributes of their child’s PCP, participants were asked to identify the degree to which they felt that the provider “is respectful of our personal beliefs and culture,” “spends an adequate amount of time with us,” “listens carefully to me and/or my family,” “helps me and my child understand the condition and treatment,” and “is skillful and knowledgeable about my child’s mental health problem.” All ratings were measured on a 7-point Likert scale ranging from 1, strongly disagree, to 7, strongly agree, and were subsequently categorized as 1–2, disagree; 3–5, neutral; and 6–7, agree.

Additional characteristics regarding the child’s age, sex, and psychiatric diagnoses and the type of clinician providing the service were gathered from the MCPAP database.

Data Analysis

Participant characteristics were summarized with means and standard deviations for continuous variables and frequencies and percentages for categorical variables. Satisfaction with PCP care was cross-tabulated by each service referral and uptake category, measure of parental perceptions of the PCP, and measure of parental perceptions of the child’s illness. Descriptive results are presented graphically and by using frequencies and percentages. Analysis was conducted with Stata, version 15.1.

Our sample size was specified in order to gain sufficient representation of rare diagnoses and sufficient precision in our estimates. We planned for our sample to contain at least 50 parents of children with rare diagnoses in order to estimate a 95% confidence interval of ±15 percentage points (assuming a conservative estimate of satisfaction of 50%). To be 80% sure that our survey had at least 50 parents or guardians of children with rare diagnoses (anticipating an additional 10% nonparticipation rate), we planned on surveying 1,030 parents and guardians.

Results

Responses were collected from 459 out of 1,046 participants, resulting in a response rate of 44%. Reasons for nonresponse included unanswered calls (N=498), incorrect phone numbers (N=74), and linguistic barriers (N=15). Assessment of care coordination received only 19 responses and was therefore excluded from this analysis. Another 66 participants did not respond to the question about overall satisfaction with the PCP’s role in helping their child with a mental health problem, resulting in a final analytic sample of 374.

A majority of calls (57%; N=210) were made within 3 to 6 months after the initial MCPAP consultation (Table 1). We found that the child’s age and sex and type of clinician were relatively balanced across satisfaction categories; however, children of participants who were not satisfied appeared to have a higher prevalence of anxiety diagnoses. Overall, there was a median of 1 total diagnosis, although some participants reported up to three separate diagnoses. In general, parents’ satisfaction with the role of the PCP in the care of their child's mental health problems was high (86%; N=322). In addition, 25% (N=92) of participants stated that they were satisfied with the service plan, 44% (N=163) were neutral, and only 25% (N=95) were not satisfied, while the remaining 6% (N=24) did not respond.

The median number of service recommendations was 4 (range 0–8), which was comparable across PCP satisfaction groups. The most common recommendation was a follow-up with participants’ PCP (94%; N=353), as opposed to a referral to a child psychiatrist (33%; N=122) or psychotherapist (58%; N=216) (Figure 1). The least common recommendations were to change (13%; N=49) or start (23%; N=84) a new psychiatric medication. Satisfaction with PCPs was generally high (>80%) for all service plans recommended by MCPAP. Lower levels of satisfaction (<80%) were observed among those who received a referral for a child psychiatrist but were not interested in the service, those who received a recommendation for MCPAP to find services but had insurance problems, those who received a recommendation for a return visit to their PCP but the status of their follow-up was unknown, and those who did not receive a recommendation for a return visit to their PCP.

Rates of satisfaction with PCPs varied minimally with regard to parent and caregiver perceptions of their child’s illness and were similar regardless of whether the parent was aware of the MCPAP consultation, although nearly all respondents noted that they knew their child’s doctor had made the consultation (Figure 2). Satisfaction rates were lowest (79%; N=66) for those who waited 6–12 months from the onset of their child’s issue prior to consulting their PCP. However, among those who waited >1 year, satisfaction improved to 87% (N=100). A majority (71%, N=250) of respondents rated their child’s mental health problem as moderately severe, and satisfaction rates decreased slightly (from 90% to 82%) as the perceived severity of illness increased from moderately severe to very severe, respectively. Although only 7% (N=24) of respondents noted very much improvement in their child’s condition between the time of the MCPAP consultation and the time of the survey, rates of satisfaction with their child’s PCP remained high and did not show much variation (84% among those who noted “somewhat improved” and 92% among those who noted “very much improved”).

Parents generally agreed (>80%) with the five statements presented to measure their perceptions of the PCP’s attributes. However, satisfaction with the PCP varied greatly in accordance with parents’ responses to these statements (Figure 3). Satisfaction with their child’s PCP was always high (ranging from 89% to 93% across all fives measures) among those who agreed with the statements overall. Although the stratified samples of participants were small, satisfaction with the child’s PCP was ≤60% among those who disagreed with or were neutral toward these statements overall. With one exception, the lowest satisfaction rates (<20%) were among those who felt that the PCP did not respect their personal beliefs and culture, did not spend adequate time with them, or did not listen carefully to them or their child.

Discussion

Our study of parents and guardians whose child’s PCP consulted with MCPAP found overall high levels of parental satisfaction with the PCP’s handling of their child’s mental health issues after MCPAP consultation. This is an important finding because past research has shown generally lower satisfaction with the primary care experience among parents pursuing care for their child’s mental health, compared with parents of children without such needs (15). In our study, 94% of families surveyed received recommendations to continue seeing their PCP for management of their child’s mental health needs, and of those, 89% returned for follow-up, suggesting positive regard for this service plan. The next most common recommendation was for short-term consultation with MCPAP (after which, treatment management is typically returned to the PCP)—not an outside psychiatrist. This pattern reflects that CPAPs are designed to operate within a consultative framework in order to empower PCPs to feel more confident in their ability to effectively manage their patients’ mental health concerns.

Parents in our study who expressed confidence in their PCP’s abilities (i.e., agreed that providers are “skillful and knowledgeable about my child’s mental health problem”) also expressed high levels of satisfaction with their PCP’s handling of their child’s mental health needs. Although we did not directly measure the impact of access to MCPAP consultation on a physician’s knowledge about and confidence with treating mental health issues, other studies have found that primary care doctors have expressed increased ability to care for their patients with mental health problems after enrolling in similar CPAPs, including MCPAP (13, 16). High levels of satisfaction with and confidence in a PCP’s abilities to handle mental health needs may be related to an increased feeling of efficacy experienced by PCPs after consulting with MCPAP.

Parents in our study similarly reported high levels of satisfaction with their child’s PCP in association with high ratings of markers of empathy (“spends an adequate amount of time with us”; “respectful of our personal beliefs and culture”) and communication (“listens carefully to me and/or my family”; “helps me and my child understand the condition and treatment”). This finding is in line with several other studies that have found higher rates of parental satisfaction when parents feel that their PCP understands their concerns, expresses empathy, communicates well, and collaborates with them during treatment planning (15, 17, 18). Thus, phone consultation with MCPAP did not appear to negatively affect the interpersonal style of the PCP.

Our study also measured relationships between several patient characteristics and parents’ satisfaction with the PCP’s management of their child’s mental health problems. For instance, this study showed an inverse relationship between parental satisfaction and the perceived severity of the child’s illness. This finding may be accounted for by the frustration that parents may feel when they perceive a high level of unmet need for their child. While this finding is in line with some past research on mental health (19) and on general chronic child illness (20, 21), the literature is mixed, as other studies have not shown parental satisfaction with mental health services to be correlated with severity of the child’s symptoms (22, 23).

Only 25% of parents surveyed were not satisfied with the mental health service plan put in place for their child after MCPAP consultation. Our study did not ask parents for specific reasons why they were dissatisfied with the service plan, but several factors may have contributed. For instance, some of the people who were referred to services did not receive those services because of insurance limitations and lack of parental interest, among other reasons. Of note, these reasons were also associated with lower levels of parents’ satisfaction with their child’s PCP. Parents and providers often hold divergent views of the seriousness of a problem and the necessity for referrals (24), which also likely affects the rate of follow-through. Other studies have shown high rates of dissatisfaction with coordination of referrals to outside resources among parents of children with special health care needs (21), which could be extended to a chronic and often debilitating condition like mental illness. The reasons why some families do not access mental health services outside of primary care may influence their satisfaction with their PCP and with the PCP’s plan for referral to a different provider. Furthermore, given that we used a one-time postconsultation survey and did not gather information regarding parents’ satisfaction with their child’s PCP prior to MCPAP consultation, the degree to which the consultation may have changed the level of satisfaction is not known. However, given the high overall satisfaction rates noted in our study, we show that MCPAP consultation did not appear to negatively affect parents’ perceptions of the PCPs.

Our study had several limitations. For one, we did not have a control group of families whose PCPs had not consulted MCPAP services; however, other studies have analyzed general parental rates of satisfaction with primary care for children with mental health problems, and those satisfaction rates tend to be lower (15). Also, our response rate was limited, at 44%, and some of the subgroups for our analysis consisted of smaller samples, which could account for some of the variability in satisfaction rates. We also did not account for the potential impact of demographic variables, including race-ethnicity, on parents’ satisfaction with their child’s PCP. This influence would be important to study in the future, as it has been well documented that racial-ethnic disparities can influence a patient’s health care quality and perception of care (25). Our study also did not include CPAPs other than MCPAP, possibly affecting the generalizability of the findings. However, since the basic consultation model is similar across CPAPs, we believe that results from this survey are relevant to programs across the country and offer insight into potential benefits of consultative programs in general. While our study was conducted several years ago, the core functions and services of the MCPAP today are unchanged from when the program was introduced in 2004. Thus, we believe that our findings remain relevant to the current program model and implementation.

Conclusions

CPAPs provide a key resource for primary care physicians and families seeking mental health care for children. In this survey of parents and guardians whose child’s PCP received assistance from the Baystate MCPAP, results indicated high use rates of recommended treatment services and high rates of parents’ satisfaction with the PCP’s management of their child’s mental health issues. These findings will hopefully encourage PCPs using consultative services such as MCPAP and help build their confidence in addressing the mental health needs of their patients. This study adds to the literature on the importance and acceptance of consultative models of delivery of psychiatric care for children.