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A Parent-Driven, Computer-Based Vaccine Information System: Addressing Variability in

Information Needs for the Varicella Vaccine

Raman, Subha V ; Jacobson, Robert M ; Poland, Gregory A . Mayo Clinic Proceedings 80. 2
(Feb 2005): 187-92.

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To determine the variability of parental interest in the depth of detail provided regarding vaccine
information.

We performed a cross-sectional, observational study in a primary care pediatric practice from

September 1 to September 30, 1995. We provided each participant an opportunity to use a self-
directed, computer-based information system using the varicella vaccine as a prototype. The
system covered 7 topics regarding the vaccine and offered 5 stages of information, ranging from
general, indisputable information at stage 1 to less common, potentially unresolved details at
stage 5. Parents viewed stage 1 information for each topic. Parents would then choose to either
view more stages or view the next topic.

Of 130 parents visiting the pediatric practice, 112 (86%) agreed to participate. We found
substantial variability in the amount of information sought. Some parents stopped with stage 1
information (15%-45%, depending on the topic), whereas others indicated they would seek more
information beyond the fifth stage (2%-14%). Overall, parents reported high satisfaction with the
system.

Quantifiable variability exists in parents' requirements for vaccine information, and our
information system addresses this issue.

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Headnote

OBJECTIVE: To determine the variability of parental interest in the depth of detail provided
regarding vaccine Information.

PARTICIPANTS AND METHODS: We performed a cross-sectional, observational study in a

primary care pediatric practice from September 1 to September 30, 1995. We provided each
participant an opportunity to use a self-directed, computer-based Information system using the
varicella vaccine as a prototype. The system covered 7 topics regarding the vaccine and offered 5
stages of information, ranging from general, indisputable information at stage 1 to less common,
potentially unresolved details at stage 5. Parents viewed stage 1 information for each topic.
Parents would then choose to either view more stages or view the next topic.

RESULTS: Of 130 parents visiting the pediatric practice, 112 (86%) agreed to participate. We
found substantial variability in the amount of information sought. Some parents stopped with
stage 1 information (15%-45%, depending on the topic), whereas others indicated they would
seek more information beyond the fifth stage (2%-14%). Overall, parents reported high
satisfaction with the system.

CONCLUSION: Quantifiable variability exists in parents' requirements for vaccine information,

and our information system addresses this issue.

Mayo Clin Proc. 2005;80(2):187-192

Although federal regulations require that childhood vaccine information must be provided to
parents,1 communicating this information remains problematic. The Centers for Disease Control
and Prevention (CDC) developed vaccine information pamphlets to facilitate this process in
1991. The pamphlets were comprehensive but lengthy.2 Studies showed that many parents
believed that the pamphlets provided too much information and that the parents may not
adequately process the information received.3,4 In a textual analysis, we found that even the
abbreviated 2-page statements introduced in 1994-the Vaccine Information Statements5-were no
more readable than their lengthier predecessors and that they also had other correctable stylistic
impairments to readability.6 A national survey of pediatricians, family physicians, and nurses
found that only 60% gave the Vaccine Information Statements at every immunization visit
(despite a federal mandate).7,8 Furthermore, although most participants responded that they
discussed vaccination with parents, 40% of physicians indicated that they did not discuss severe
adverse effects of the vaccine with the parent during the visit.7 One study has examined
variability in information sought with respect to diabetes mellitus,9 but a similar examination has
not been performed for vaccines.

We sought to quantify the variability in parent information needs regarding childhood

vaccination. Specifically, we sought to determine how much detail of information different
parents attending a pediatric primary care practice would want regarding the then newly
approved varicella vaccine. To accomplish this, we created a novel parent-driven, computer-
based vaccine information system. This obviated the usual constraints to vaccine information,
including practitioner time and unclear needs of the parent. This system addressed issues
regarding time limitations of the parent and other limitations of the paperbased Vaccine
Information Statements. We sought to correlate the stages of information desired with parental
education achieved, past experience with varicella, and past experience with vaccination in
general. We also examined intrasubject variation in the stages selected among the different
topics. Finally, we determined the feasibility and the time involved in using the system and
measured parental satisfaction.

PARTICIPANTS AND METHODS

We conducted a cross-sectional, observational study at the primary care pediatric practice site at
the Mayo Clinic in Rochester, Minn, from September 1 to September 30, 1995. This practice
serves the predominantly upper middle-class community of Rochester. We chose the varicella
vaccine because it was newly approved that year10 and was associated with some controversy
even among health care officials and physicians. We believed that parents would be eager for the
new information regarding this vaccine. The clinic had adopted routine use of the vaccine several
months before, and practitioners were routinely administering the vaccine to children 12 to 15
months old and offering it to all children older than 15 months who had not yet had chickenpox.
Parents attending this clinic had not previously received any written or oral information
regarding the varicella vaccine. The study intervention preceded the actual physician visit and
any vaccinations associated with that visit.

We enrolled parents whose children presented consecutively to the clinic for vaccine-only visits,
well-child visits, or acute care visits in which vaccination was discussed. We did not restrict the
study to visits in which the varicella vaccine would necessarily be considered. We chose a
sample size of 100 for practical reasons. We did not include patients who were unaccompanied
by a parent, for example, an adolescent who presented alone for a vaccine. We obtained
informed consent from parents to participate in this Mayo Foundation Institutional Review
Board-approved protocol. We explained to the parents that they would not have to operate the
computer to participate; one of the investigators could point, click, and type for the parent. Our
approach facilitated parents who might be apprehensive about computers.

VACCINE INFORMATION SYSTEM

We developed the text from several sources but primarily from the recommendations of the
American Academy of Pediatrics Committee on Infectious Diseases.10 After making minor
modifications from piloting the program with focus groups of parents and others, we calibrated
the Flesch grade level11 (a measure of reading ability) to be at the eighth-grade reading level.
Studies of literacy in the adult population guided the selection of this particular reading level.12
We used FileMaker Pro software13 to present the text of the vaccine information system and a
demographics survey. This platform provided a user-friendly interface that allowed us to record
parental responses for later analysis.

We organized the information into 7 topics: (1) information about the disease; (2) complications
that may result from the disease; (3) the nature of the vaccine, the number of doses, the route of
administration, and the timing of the doses; (4) the health benefits of the vaccine; (5) the
potential health risks of the vaccine; (6) a description of who should get the vaccine; and (7) a
list of those who should not get the vaccine. We chose these topics from the categories in the
CDC vaccine information pamphlets.1 The information in each topic was further divided into a
hierarchy of 5 stages. Stage 1 addressed the most general and indisputable information. Stage 2
dealt with specific, common issues without numbers. Stage 3 offered specifics with numbers.
Stage 4 concerned uncommon issues, whereas stage 5 included unresolved issues. Table 1
provides a specific example from the actual text for the topic "About the Vaccine Risks" that we
used in this study. We wrote each passage for each stage aiming for an eighth-grade reading
level, thus maintaining readability and comprehension throughout the 5 stages.

PARENT ENCOUNTERS

One of us (S.V.R.) introduced herself to parents as they waited with the patient for a visit with a
health care practitioner. She explained the study and sought verbal consent. Consenting parents
were then shown how to access the self-directed, computer-based vaccine information system.
After viewing the list of topics on the screen, the parent viewed descriptions of the 5 stages of
detail. After reading the stage 1 text for a topic, the screen prompt directed the parent to select
either to receive more detail at the next stage on the same topic or to move to the next topic.
Thus, the parent initially read stage 1 for the first topic, "About the Disease." If the parent
wanted more detail about the disease, the parent went to stage 2; otherwise, if satisfied with this
information, the parent went to the next topic, "Complications of the Disease." The highest stage
that the parent read represented the depth of information sought by the parent. When the parent
reached the last stage for a topic (stage 5), the prompt asked if more information (if available)
would have been desired. For parents who indicated they would have desired more information
than stage 5 offered, we recorded their depth sought as "beyond" and treated it statistically as a
sixth stage.

For each of the 7 topics, we recorded the depth of detail sought by each parent. We also used the
computer's built-in clock to record the amount of time each parent spent proceeding through the
vaccine information system. The session concluded with several demographic questions to elicit
information about the visit, child, and parent. The prompt sought answers to the following: (1)
"How satisfied were you with this form of presentation for learning vaccine information?" and
(2) "How do you feel about computers?" If necessary, one of us (S.V.R.) assisted the parent in
the use of the computer but neither read the material out loud nor answered questions regarding
the vaccine. At any time, the parent could terminate the process.

STATISTICAL ANALYSES AND OTHER ISSUES

For the primary end point, we report for the 7 topics the greatest depth or highest stage of
information sought by a parent. To examine intrasubject variation, we defined 2 summary
variables to represent what a given parent sought-median depth sought and greatest depth sought.
Median depth sought represents the median number of stages of information for 1 parent across
all 7 topics. Greatest depth sought represents the greatest depth or highest stage of information
read across all 7 topics. We used the Spearman correlation (the correlation of the median depth
sought with parental education or with prior experience with the disease) to examine secondary
end points. We used the Friedman test to examine across the 7 topics whether the differences in
variation in median depth sought were statistically significant.
We used the mean and SD to report the time the process took for parents. We measured
satisfaction with the information system using the following 5-point Likert scale: very
dissatisfied, somewhat dissatisfied, neutral, somewhat satisfied, and very satisfied. Similarly, to
assess comfort with computers, we used the following 5-item scale: very ill at ease, somewhat ill
at ease, neutral, fairly comfortable, and very comfortable.

RESULTS

Of the 130 parents who were offered, during their child's medical appointment, the option of
participating in this study, 17 (13%) declined participation. We did not obtain demographic
information from these 17 parents because most of them declined participation due to concerns
regarding the time that participation would have taken. Exclusions included 1 adolescent who
presented for vaccination without a parent, and 1 parent who could not read English, leaving a
total of 112 parents. All participants were white. Table 2 summarizes the characteristics of the
sample. Thirty-eight percent of the parents attended the clinic that day for a vaccine-only visit,
4% for an acute care visit, and 59% for a well-child visit.

Figure 1 shows the different depths of information sought across all topics; the distribution of
results captures the variation in topic choice among parents in median and greatest depth sought.
The median of greatest depth sought was 5, meaning that the median depth a given parent read
through was to stage 5 on at least 1 topic. The inter-90th percentile range for median depth
sought was 1 to 5, thus including the most basic and most comprehensive information as
expected. A total of 15% to 45% of parents stopped with stage 1 information depending on the
topic, whereas others sought detail beyond stage 5, ranging from 2% to 14%. As given in Table
3, the interquartile ranges show substantial variability among parents across topics: 54% varied
by 3 or more stages across topics, and 10% varied by 5 stages across topics. The Friedman test
indicated that the variation in median depth sought among parents across topics is statistically
significant (P<.001). Table 4 gives the maximum depth sought across the sample of parents.
Only 1 parent stopped reading at the same stage for all 7 topics; 28% sought the fifth stage for at
least 1 topic, and another 28% sought more information beyond the fifth stage.

We examined the correlation of choices made with various parental characteristics. The median
depth sought did not correlate with the parent's amount of education (Spearman =0.131, 2-tailed
P=.17). We also found that previous experience with chickenpox did not significantly affect the
median depth sought (Spearman =-0.0938, 2-tailed P=.32) but that previous experience with the
chickenpox vaccine had a small effect (Spearman = -0.186, 2-tailed P=.05). When comparing
by visit type, we found no appreciable difference in depth. Since most parents had no prior
experience with a major vaccine adverse effect (97%) or with the varicella vaccine (89%), we
could not assess the impact of these variables.

The mean time required for a participant to go through the instructions and all 7 topics was 7.00
minutes, with an SD of 2.87 minutes. Overall, satisfaction with the computer-based, parent-
driven format was high, with 73% reporting "very satisfied," 25% "somewhat satisfied," and the
remainder "neutral." We found that most participants were fairly or very comfortable with
computers. The median response was "very comfortable," with the 25th percentile being "fairly
comfortable" and the 10th percentile being "neutral." However, comfort with computers
correlated with neither median depth sought (Spearman =0.0728, 2-tailed P=.44) nor
satisfaction (Spearman = -0.100, 2-tailed P=.29).

DISCUSSION

One might argue that all parents should receive the same amount of information. This concern
cannot be answered by our study; we sought instead to learn the variability among parents in the
depth of information they would seek when offered a choice. We found that a hierarchical, self-
directed information system allowed individuals to select and read the information of interest to
them. We found that parents chose, on average, the second or third of 5 stages of information for
various aspects of varicella vaccine information, but we also found significant variation across
topics and across the sample. We could not attribute this variation to differences in the amount of
education or prior experience with varicella.

The refusal rate (13%) mainly constituted parents who stated that they did not have time to
participate after completing their scheduled visit. In our study, parents remained in the
examination room to use the information system. Their child, the patient, and any siblings who
accompanied the patient also remained in the room. This might force a practical limitation on
how long some parents could take in using the information system, but it also models the typical
situation the average parent would face in practice. Alternatively, the system could be used by
parents in the waiting area preceding the clinical encounter. The information system could be
placed on a Web site for parents to read at their leisure. This would also facilitate dissemination
of information in a large managed care setting where patient volume may be high.

A substantial percentage of parents (28%) wished at some point to have more detail than what
was provided. Parents were told at the outset of the encounter to ask their clinicians any further
questions once they completed the program. This allows the parent to receive information
concerning a particular vaccine and to focus the limited time in the clinical encounter on any
remaining unanswered questions. Thus, we envision this system as a valuable supplement to the
process of communicating vaccine information to parents. We recognize that our lowest stage
might contain too little information to meet minimal standards for an informed decision. In 1995,
no Vaccine Information Statements on varicella existed. The CDC had set no standard for
parental communication regarding the vaccine. One can imagine a computer-based information
system for a vaccine in which the lowest stage contains all the information given in the current
Vaccine Information Statements. We also recognize that we chose an eighthgrade reading level,
which worked well in our upper middle-class community but may require revision in other
settings. The CDC's current varicella Vaccine Information Statements has a Flesch-Kincaid
reading ease grade level of 6.0.

One limitation to the generalizability of our study is that the population surveyed was fairly well
educated (more than half had advanced education beyond high school) and probably more
comfortable with computers than the average parent, although only minimal computer skills
were needed to use the program (pointing and clicking) and help was available for these tasks.
Although we found that the computerized form of presentation satisfied even parents who
identified themselves as ill at ease with computers, further studies in other populations are
required to confirm this acceptability. Further work is also needed to quantify the impact of this
system on patient education and behavior regarding immunization. Inadequate parental education
may contribute to delayed immunizations14; in at least one other area, tailored educational
materials have been shown to improve patients' participation in preventive health strategies.15

A second limitation of our study is that it failed to give information now required by law
regarding the Vaccine Information Compensation Program.1 It would be useful in subsequent
studies to determine how much more information parents would seek beyond the material
published in the Vaccine Information Statements regarding this program. A third limitation is the
relative sophistication and homogeneity of the parent sample. Again, subsequent studies should
address the utility and acceptability of this information system in different populations. Finally,
although efforts were made to mimic an office visit, the focus on a single, novel vaccine does not
address the time necessary or the acceptability of an information system that would address all
vaccines that are due.

CONCLUSION

Our parent-driven vaccine information system addresses variability in information needs and is
acceptable in an upper middle-class practice. We believe that this represents a major advance in
the dissemination of patient information by appropriately using technology to determine
variability in information needs not only among parents for a given vaccine but also across topics
among parents, neither of which is appreciated in the monolithic use of a single, federally
mandated information statement. This computer-based system could be used to supplement those
statements and might be particularly useful with the introduction of a new vaccine. We suspect
that the provision of information in other fields of medicine would also benefit from a user-
centered, hierarchical approach. The actual device used in our work may serve well in other
areas; by simply modifying the text of the software, one can assess and address variability in
virtually any clinical setting that requires the communication of complex information. The
ultimate goal of addressing variability in patient information needs is a more useful clinician-
patient encounter; this work represents one step in that direction.

We acknowledge funding for this study from the Mayo Clinic. We thank the parents, patients,
nurses, and patient service representatives of the Division of Community Pediatric and
Adolescent Medicine in the Department of Pediatric and Adolescent Medicine at Mayo Clinic.
We also acknowledge Kim S. Zabel for her editorial suggestions.

References

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