OBJECTIVE. In this study we assessed the views of parents of children referred to specialty care and the views of the children's primary care and specialty physicians about parents' roles as information intermediaries.
METHODS. We enrolled 179 patients who were newly referred from primary care pediatricians in 22 practices to 15 pediatric subspecialists in 5 specialties in a study of primary care pediatrician-specialist communication. Parents, primary care pediatricians, and specialists completed questionnaires by mail or telephone at the first visit and 6 months later. Questions included perceived responsibilities of parents as information conduits between primary care pediatricians and specialists. Opinions of parents, primary care pediatricians, and specialists about parents' roles were compared for the sample as a whole, as well as for individual cases. Agreement between parents and providers was assessed. Demographic and clinical determinants of parents reporting themselves as “comfortable with” or “acting” as primary intermediaries were assessed using logistic regression.
RESULTS. More parents (44%) than primary care physicians (30%) felt comfortable with parents acting as primary communicators between their children's physicians; 31% of parents who reported that they were the primary communicators felt uncomfortable in that role, and there was no agreement between parents and physicians about the role of parents in individual cases. Although no demographic characteristics of children or parents were associated with parent comfort as the primary communicator, parents of children who saw the same specialist more than once during the 6-month period felt more comfortable in this role. The presence of a chronic condition was not associated with parent comfort.
CONCLUSIONS. Although parents report more comfort with their own ability as information intermediaries than do their children's physicians, the role in which they feel comfortable is highly variable. Physicians should discuss with parents the roles they feel comfortable in assuming when specialty referrals are initiated.
More than one half of children and youths with special health care needs require specialty care annually.1 To meet the needs of children with complex conditions, coordination of care between a child's primary care medical home and specialists is essential.2,3 However, one essential part of care coordination, that is, communication of medical information between referring and consulting physicians, is frequently a problem. Several characteristics of the health care system contribute to this,4–6 including the following: medical charts are not easily sharable across care settings,7,8 reimbursement for communication is limited at best,9 and chronic condition management is not part of the prevalent model for providing outpatient care.10 Inadequate communication (especially from primary care physicians to specialists) is therefore prevalent11 and is associated with specialist reports of problems providing optimal care.8 Deficient communication also can lead to problems such as duplication or omission of needed services and medical errors.6
Multiple forces contribute to parents being left as the default method of information exchange between physicians, such as failure of multiple physicians caring for the same child to communicate with one another and the natural role that parents take as communicators between their younger children and their children's physicians. Parent participation in decision-making and in information sharing, 2 elements of family-centered care,12 is generally accepted as beneficial.6,13,14 However, leaving parents as the only method of information sharing between physicians may not be desired by parents and may not be appropriate for good care of their children. Parents of a child with a condition requiring specialty care must cope with a new and worrisome diagnosis, absorb a large amount of new information, and master a potentially complex treatment plan. Individual parents may be able to communicate complex medical information between their child's physicians to varying degrees and should be supported in that role. It seems inappropriate, however, to expect parents to assume full responsibility in all cases.
The extent to which parents act as information intermediaries between their child's primary care and specialty physicians has not been described, and its desirability by parents and physicians has not been investigated. Our goals in this study were to determine the degree to which parents served as information intermediaries in a sample of children referred from community primary care practices to an academic referral center, to assess the desirability of this role, as perceived by parents and physicians, and to assess agreement between parents and physicians about the parent role. We also sought to determine demographic and treatment characteristics associated with parent roles.
Setting and Subjects
This study was conducted as a component of a larger study to examine communication between community primary care pediatricians (PCPs) and pediatric medical specialists in central Massachusetts between April 2002 and January 2004. Full descriptions of eligible physician practices and patients are provided elsewhere.8 Briefly, we recruited parents of children and youths with special health care needs who were referred from 1 of 30 community pediatric practices to 1 of 5 pediatric medical specialties at a university-based referral center and a large multispecialty group practice, which together provide >90% of specialty care to children in the area. Parents whose child was referred to a participating specialty for a new patient appointment by a participating PCP, who spoke English as a first or second language, and who were planning to be available for contact 6 months after the specialty visit were eligible. Parents were made aware of the study through a letter or telephone call, after being initially identified by the computerized scheduling system at each site 2 weeks before the specialty visit. Consecutive families were recruited either in person at their clinic appointment or via telephone after their child's visit. Eligibility was confirmed by the research assistant, and informed consent was obtained from all interested parents, according to policies of the institutional review boards of the University of Massachusetts Medical School and the Fallon Clinic. Verbal assent was obtained from children >7 years of age who were able to give assent.
At the time of enrollment, the research assistant obtained demographic data about the child and parent, data about the condition for which the child was referred and other conditions the child had, and other specialists seen by the child. To identify children with chronic conditions, the Questionnaire for Identifying Children With Chronic Conditions-Revised (QUICCC-R)15 was administered to parents. Because the processes of diagnosis, treatment planning, and relationship building between parents and physicians typically take several months, another survey was administered to the same parents 6 months after the first specialty visit, via telephone or mail, to obtain information about satisfaction with care,16 perceptions of communication between the child's PCP and specialist, and the parent's perceived role in information transfer between the child's PCP and specialist. Questions were asked on three topics, expanded from questions that were asked of physicians in a previous study7 to assess the spectrum of physician and parent views: (1) the importance of playing an active role in helping their child's doctors communicate with one another; (2) comfort with the scenario in which they might be the primary way for their child's doctors to communicate with one another; and (3) whether they actually serve as the primary way for their child's doctors to communicate with one another. Responses for the first 2 of these questions were on a 4-point scale, ranging from very important to not at all important and from very comfortable to very uncomfortable.
At the time of administration of the follow-up parent surveys 6 months after each child's initial specialty visit, the PCP and specialist were given written questionnaires about receipt of communication from one another, as well as their perceptions of communication with one another about the child's care and the parent's role in PCP-specialist communication. Physicians were encouraged to consult medical charts when completing follow-up questionnaires about communication, to maximize the accuracy of recall. Questions addressed whether PCPs and specialists had received any communication from one another and perceptions of the parent role in information transfer and comfort with that role. Questions and possible answers about the parent role in PCP-specialist communication were worded similarly on parent and physician questionnaires, to enable comparison of responses between groups. Before implementation, study procedures were pilot tested with parents and physicians for a sample of 10 children at each specialty site.
Differences in opinions of parents, PCPs, and specialists about parent roles in information transfer for the sample as a whole were assessed by using Mann-Whitney U tests for ordinal variables and χ2 tests for categorical variables. To assess agreement or disagreement between parent, PCP, and specialist responses for individual parents about each of the 3 questions on the parent's role in information transfer, concordance was assessed by using Cohen's κ, collapsing parent and physician responses from 4 to 2 categories when applicable. As another way of examining the relationship between parent, PCP, and specialist responses on this topic, a 9 × 9 matrix of Pearson correlation coefficients between paired questions was constructed.
We used logistic regression models to identify characteristics of the patients, families, and reported PCP-specialist communication that were determinants of 2 outcome variables, that is, parent comfort as the primary means of PCP-specialist communication and parent report of actually serving as the primary means of PCP-specialist communication. After univariate distributions were examined, continuous variables (except patient age) were collapsed into 2 to 4 categories for reporting and analyses. Model building then proceeded in 2 steps. First, for independent variables, bivariate logistic regression models were constructed to identify and to estimate the relative importance of characteristics associated with the 2 outcome variables. Variables associated with the outcome at a level of α ≤ .20 were evaluated further for inclusion in multivariate models, guided by goodness-of-fit statistics that included Akaike information criterion, residual analysis, and C statistics.17 Variables chosen were then entered into multivariate logistic regression models by using forward stepwise selection, for which a level of α ≤ .05 was used to determine significance. Odds ratios (ORs) and 95% confidence intervals (CIs) are presented.
Of 179 children who were enrolled and found to be eligible for the study, completed 6-month questionnaires were received from PCPs for 173 children (97%), from specialists for 157 children (88%), and from parents for 121 children (68%). Demographic characteristics of the 179 children and parents, along with disease and specialty visit characteristics, are shown in Table 1. There were no differences in any of these characteristics between children of parents who completed 6-month questionnaires and those who did not complete them. After 6 months, PCPs reported receiving any information from specialists for 96% of children, but specialists had received communication from the PCPs in only 50% of cases.
Table 2 describes parent, PCP, and specialist opinions on the importance of parents playing a role in interphysician communication for the children enrolled in the study. Most parents felt comfortable in this role; as a group, parents felt that it was more important that they play a role (mean: 3.7 on a 4-point scale) than did PCPs (mean: 3.3; P < .001), who in turn felt more strongly than specialists that it was important for parents to play a role in communication (mean: 2.7; P < .001, compared with PCPs).
Table 3 describes parent, PCP, and specialist comfort with the more-stringent situation in which parents would be the primary method of information transfer between physicians. Overall, comfort with this scenario was less than that with the scenario of parents simply playing a role in information transfer. As in the preceding scenario, parents as a group felt more comfortable than PCPs (mean: 2.4 vs 2.1; P = .03), but there was no difference between PCP and specialist responses (2.1 vs 2.2; P = .26). There was also no significant difference between responses of parents and specialists (P = .13). When parents and physicians were asked if the parent of the child actually was the primary means of communication between PCPs and specialists, 45 parents (38%), 34 PCPs (21%), and 17 specialists (12%) replied affirmatively. When parent-PCP, parent-specialist, and PCP-specialist proportions were compared, all were significantly different from one another (P ≤ .03). Of parents who reported that they were the primary means of communication, 14 (31%) felt uncomfortable in their role.
When concordance between parent-PCP, parent-specialist, and PCP-specialist pairs were examined for individual patients by using the κ statistic for each of the 3 questions about parent roles in communication, there was only slight agreement between PCPs and specialists about whether parents actually were the primary means of communication, with a κ of 0.17. All other κ values among the 8 other comparisons ranged from −0.07 to 0.07.
Relationships between parent, PCP, and specialist responses to questions about the importance of parents playing an active role in PCP-specialist communication, comfort with parents being the primary means of communication, and whether parents actually were the primary means of communication were also examined by using a correlation matrix. Moderately positive correlations (r = 0.24–0.55; P < .01) existed between (1) parent comfort as the primary communicators and parents thinking that they are the primary communicators, (2) PCP comfort with parents being the primary communicators and PCPs thinking that parents should play an active role, (3) PCP comfort with parents being the primary communicators and PCPs thinking that parents actually are the primary communicators, and (4) specialist comfort with parents being the primary communicators and specialists thinking that parents should play an active role. However, no significant correlations were found for any responses across groups of respondents (parent-PCP, parent-specialist, or PCP-specialist).
Independent patient-level predictors of the outcome of parent comfort with the scenario in which the parent would be the primary communicator from the child's PCP to the specialist are described in Table 4. No demographic variables were associated independently with the outcome and neither were most characteristics of the child's condition. However, parents of children with >1 visit to the specialist during the 6-month enrollment period were more likely to report comfort with this scenario than were those whose children had only 1 visit (53% vs 34%). Not surprisingly, parents who thought that they actually served as primary communicators were also more likely to report comfort with this role than were those who did not think that they were the primary communicators (69% vs 28%).
Table 5 describes independent patient-level determinants of parent reports that they actually serve as the primary communicators from PCPs to specialists. Parents of older children were more likely than those of younger children to report that they were the primary communicators between their children's physicians; children of parents who responded affirmatively were 9.2 ± 5.3 years of age (mean ± SD), compared with 6.8 ± 5.2 years of age for parents who responded negatively. Parent comfort with being the primary communicator remained a significant determinant of parent reports of being the primary communicator in this analysis. No other demographic characteristics of children or parents and no characteristics of the specialty visit or condition were significant determinants of parents reporting that they were the primary communicators between PCPs and specialists.
To our knowledge, this is the first report describing parents' perceptions of their roles as communication intermediaries between their children's PCPs and specialty physicians. In our sample of referrals from community primary care pediatric practices to pediatric medical specialties at an academic referral center, we found that a large majority of parents thought that it was important for them to take an active role in communication between their children's physicians. A smaller but still substantial proportion (38%) of parents perceived themselves as the primary method of communication between their children's physicians and, whereas most of them felt comfortable in that role, almost 1 in 3 did not. Moreover, in individual cases, parents and physicians did not agree on comfort with or occurrence of parents acting as primary information intermediaries. Parents who felt comfortable in this role were more likely to have children who experienced more visits to the specialty in question during the 6-month period, whereas parents who thought that they were primary information intermediaries were more likely to have children who were older at the time they were enrolled.
In general, parents felt more comfortable with themselves as information intermediaries than did either PCPs or specialists. In responses to both the more-general question regarding comfort playing an active role and the more-specific question regarding comfort playing the primary role as information intermediary, parents felt more comfortable than did their children's physicians. Notably, PCPs felt more comfortable with parents playing at least some role in the communication process than did specialists. Because our study examined only new referrals and only approximately one half of children in the study had >1 visit to the specialist during the 6-month period, it is possible that PCPs' greater familiarity with the family contributed to their increased comfort, compared with specialists. Alternatively, unmeasured differences between PCPs and specialists in attitudes about parent roles in communication might have contributed to differences in comfort.
Our data also suggest that parents had the most realistic view of their role as information intermediaries, compared with their children's physicians. Because specialists reported communication from referring PCPs for only 50% of enrolled children, it is likely that parents played the role of intermediary in some capacity for the remainder of cases. However, only 12% of specialists and 21% of PCPs thought that parents played this role, compared with 38% of parents. Fortunately, the majority of parents who thought that they were the primary information intermediaries felt comfortable in that role; however, a significant minority did not. These findings agree with those from a previous study,18 in which many parents reported being the only coordinators of care for their children and some reported dissatisfaction with this situation; they also agree with previous qualitative work on the topic, which showed that families emphasize collaborative relationships more strongly than do physicians when conceptualizing family-centered care.14
The lack of correlation between responses of parent, PCP, and specialist groups to any questions about the parent role as information intermediary, and in particular the lack of agreement between individual parent-PCP, parent-specialist, and PCP-specialist pairs regarding comfort with or identification of parents as information intermediaries, is striking. It is not surprising, however, because division of responsibility for communication between parents and their children's physicians is a subject that is unlikely to be at the forefront of discussions during the referral and consultation process. However, these findings, combined with the findings that parents do assume the role of information intermediary in a large number of cases, point strongly to the need for physicians and parents to discuss this role when children receive specialty care. Because some parents may feel more capable than others in this role, parents should be given choices about their role in communicating information between their children's physicians. Parents who desire an active role should then be supported by physicians and their practices, with tools including copies of referral and consultation letters and supporting medical information.
Examination of demographic and clinical characteristics associated with parent comfort with being the primary information intermediary between the child's PCP and specialist revealed few characteristics associated independently with parent comfort. Parents whose children required >1 specialty visit during the 6-month period felt significantly more comfortable in this role than did those whose children had only 1 visit, as well as parents who thought they acted as primary communicators between their children's physicians. Interestingly, neither the presence of a chronic condition nor other factors potentially associated with parents' experience with the health care system were associated with parent comfort as the primary communicator. Also, although more-educated parents felt less comfortable as primary communicators in the univariate analysis, the multivariate analysis did not support this association. These findings suggest that familiarity with a given specialist, rather than more experience with their children's illness and with other aspects of the health care system for children and youths with special health care needs or parent/child demographic features, is a stronger predictor of parent comfort with being an information intermediary. Because few specialists in our study felt comfortable with parents as primary information intermediaries, it is possible that parents sensed this at the beginning of their relationship with the specialist but became more comfortable in this role over time.
Assessments of determinants of parents thinking that they were the primary information intermediaries between their children's physicians revealed that parents of older children were more likely to report acting in this role, with a mean difference of >2 years between the 2 groups. Again, no other demographic or clinical characteristics were associated with this outcome. To explore this association more thoroughly, we conducted a limited analysis of the relationship of the children's ages with PCP and specialist reports of parents as primary communicators and found no relationship. Although we did not gather data about parents' ages or the length of time that the children had had their conditions, we speculate that parents, over time, are more likely to see themselves as having a greater role in communication between their children's physicians.
Our findings point to a need for assessment of parents' preferred roles as information intermediaries when their children are referred to a specialist, with facilitation when appropriate. One previously published study described parents' dual feelings of responsibility and unease with their role as information intermediary,14 as well as a desire to work closely with health care providers to share information. However, few published articles describe processes through which parents' capabilities in information sharing can be assessed or promoted in the context of a busy practice. In general, parents of children with chronic illnesses desire more information about their child's illness.19 Other studies found that providing large amounts of information contributed to greater satisfaction in parents of children with developmental disabilities20 and that spending more time, having more appointments, and providing written instructions contributed to greater information recall and satisfaction.21 Kaplan22 found that parents want physicians to coach them and their children in treatment planning. However, individual parents' abilities to understand, to process, and to communicate information are likely to vary in different situations, which suggests that an individualized approach to assessing and promoting parent partnership in communication may be necessary. Truly collaborative relationships between families and physicians need to include assessments of preferences, role negotiation, and support of parent roles.14 More research on this topic is needed, to construct practical interventions to promote parent partnerships in the pediatric outpatient setting.
This study's main limitation is that information was obtained primarily through parent and physician reports. Factors dependent on individual physician-parent interactions could not be assessed, because no observation of individual visits was undertaken. In addition, although the study is representative of referrals between community practices and academic and nonacademic pediatric medical specialists, it was performed in a single area with an English-speaking sample, which limits its generalizability to other populations. Nonetheless, the primary finding that parents often serve as information intermediaries between their children's physicians corroborates findings in other national studies.
Although better communication between PCPs and specialists is needed to prevent parents being put into the role of primary information intermediaries, parents do play a role in information exchange in the current system, and many think that this is appropriate. When children are referred to specialty care, physicians should discuss with parents how information will be communicated, ask parents about their desired role in this process, and facilitate parents' participation to the degree they desire. More information is needed on the range of responsibility that parents desire in information exchange and use and how best to define parents' roles as team members with their children's primary care and specialty physicians.
This work was supported in part by Robert Wood Johnson Foundation Generalist Physician Faculty Scholars Program grant 42206.
We thank physicians and staff members at the participating practices for support in completing this study; Suzanne Gottlieb, MEd (Massachusetts Department of Public Health), for helpful review of the manuscript; and Andrew Giese and Christine Gagne for expert technical assistance.
- Accepted June 12, 2007.
- Address correspondence to Christopher J. Stille, MD, MPH, Division of General Pediatrics, University of Massachusetts, Benedict A3-125, 55 Lake Ave N, Worcester, MA 01655. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
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- Copyright © 2007 by the American Academy of Pediatrics