Long-term satisfaction and parental decision making about treatment of deformational plagiocephaly.

ORIGINAL ARTICLE

Long-Term Satisfaction and Parental Decision Making About Treatment of Deformational Plagiocephaly Sybill D. Naidoo, PhD, RN* and An-Lin Cheng, PhDÞ Abstract: The incidence of deformational plagiocephaly (DP) has increased greatly during the last 2 decades since the recommendation of supine sleeping. Currently, there are 2 treatment options for DP, helmet therapy and repositioning therapy. This research investigated factors that influenced parental decision making about treatment choice and long-term satisfaction with head shape. A retrospective chart review identified 1660 children, now aged 2 to 10 years, seen in the DP clinic meeting inclusion criteria. Questionnaires were mailed to all eligible families. Four-hundred fifty-six completed questionnaires were returned. The questionnaires evaluated demographics of the family, factors that influenced treatment choice, and satisfaction with current head shape. Most of the respondents had white (93%) and male (70%) children. The mothers’ mean age at the time of childbirth was 31 years; most of the mothers had a college degree or higher (77%) and household incomes of more than $76,000 (52.6%). Fifteen factors were used to evaluate which ones were significant in influencing parental treatment choice. Severity of the DP and time off work for follow-up appointments were the only 2 factors identified that significantly affected treatment choice. More parents who used helmet therapy reported that they were satisfied with their child’s long-term head shape and would choose the same treatment again (P = 0.002) compared with those who used repositioning therapy. Key Words: Deformational plagiocephaly, long-term outcomes, factors influencing treatment, demographics, parental satisfaction (J Craniofac Surg 2014;25: 160Y165)

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upine sleeping and positioning frequently cause deformational plagiocephaly (DP).1Y4 However, there are many other risk factors that may contribute to the development of DP. Some of these risk factors are multiple births, primagravidity, restricted intrauterine environment, assisted delivery, male sex, positional head preference, torticollis, developmental delays, or prematurity.2,5Y8 Up to 48% of infants may develop some degree of DP.2,9,10 The incidence of DP has increased significantly since 1992, when the Back to Sleep Campaign for the prevention of sudden infant death syndrome began.9,11,12 With the growing number of cases of DP during the last 2 decades, questions have arisen among parents and pediatric health care providers as to the most effective treatment. There are few long-term studies documenting parental satisfaction with the child’s head shape at 2 years or older. There are also no studies identifying factors that drive parental decision making about treatment of the child’s DP. Currently, there are 2 available options for treating DP: repositioning and helmeting.13Y17 The specific aims of this study were the following: 1. To examine parental satisfaction with the treatment option selected and the child’s long-term head shape 2. To identify factors that influenced parental decision making with regard to the treatment option selected (helmet versus repositioning).

MATERIALS AND METHODS Population A retrospective chart review was done to identify patients evaluated in the DP clinic during the last 10 years. The inclusion criteria for this study were the following: (1) the child is between 2 and 10 years of age, (2) baseline assessment was performed in the DP clinic at age 0 to 6 months, and (3) the child was seen by a single provider in the DP clinic. Exclusions were the presence of any other craniofacial deformities, anomalies, and syndromes and initial diagnosis after the age of 6 months. The age of 2 years or older was used because approximately 85% of skull growth occurs during the first year or so of life.18,19 Approximately 1700 met the age and diagnostic criteria for inclusion in this study.

Procedures From the *Cleft Palate-Craniofacial Institute, Division of Plastic and Reconstructive Surgery, Washington University School of Medicine, St. Louis Children’s Hospital, St Louis, Missouri; and †University of MissouriYKansas City, School of Nursing and Health Studies, Kansas City, Missouri. Received March 6, 2013. Accepted for publication August 24, 2013. Address correspondence and reprint requests to Sybill D. Naidoo, RN, CPNP, PhD(c), Division of Plastic and Reconstructive Surgery, Washington University School of Medicine, 660 S. Euclid Ave, Campus Box 8238, St Louis, MO 63110; E-mail: [email protected] The authors report no conflicts of interest. Copyright * 2014 by Mutaz B. Habal, MD ISSN: 1049-2275 DOI: 10.1097/SCS.0000000000000383

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A letter explaining this study along with the DP questionnaire was mailed to all potential participants. The parents were asked to complete the questionnaire and return it in the postage-paid, addressed envelope provided. The DP questionnaire identified factors influencing parental decision making with regard to the treatment option selected (helmet versus repositioning). The questionnaire also evaluated parental satisfaction with the treatment choice and the child’s current head shape. This paper questionnaire consisted of 24 questions and took approximately 5 to 10 minutes to complete. Of the 24 questions, 3 were yes/no responses, 7 were 5-point Likert scale items, 3 were open-ended questions, and 11 were for demographic and/or classification purposes. There were no questionnaires in the literature evaluating these specific aspects of DP. Therefore, this questionnaire was developed specifically for this population.

The Journal of Craniofacial Surgery

& Volume 25, Number 1, January 2014

Copyright © 2014 Mutaz B. Habal, MD. Unauthorized reproduction of this article is prohibited.



Institutional review board approval was obtained before beginning any research activities. The subjects completing the questionnaire gave implied consent by returning the anonymous completed questionnaire.

RESULTS A total of 1660 questionnaires were mailed to the families meeting the inclusion criteria. A second reminder questionnaire was mailed out approximately 12 weeks after the first one. A total of 456 completed questionnaires were returned, which represents a response rate of 27.5%. Ten completed questionnaires were excluded because the parents documented an anomaly that affects craniofacial growth, leaving 446 questionnaires for use in the analysis. Demographics from this questionnaire are presented in Table 1.

Parental Satisfaction Data from the questionnaires were examined for the level of parental satisfaction with the child’s long-term posttreatment head shape. The findings showed that the parents who used either repositioning or helmeting to treat their child’s DP were both satisfied. More than 90% (n = 391) of the respondents were satisfied with their child’s current head shape. The results of whether the parents would choose the same DP treatment option again are shown in Table 2. The parents who used the helmet were more likely to choose the same treatment method again. This finding was significant with a P value of 0.002.

Factors Associated With Helmet Use The association of factors such as primagravidity, plural births, torticollis, sex, prematurity, age at the time of treatment, mothers’ age in years at the time of birth, mothers’ education level, household income, race, distance traveled to clinic, time off work for follow-up appointments, transportation issues, parental perception of severity of the DP, and insurance coverage for the helmet with the type of DP treatment selected was analyzed with a logistic regression. The results of the logistic regression analysis (Table 3) found that only 2 variables were significant predictors of treatment decision: time off work for the parent and severity of the DP at the time of treatment.

Qualitative Analysis of Open-Ended Questions The first open-ended question was ‘‘If you had to choose between helmeting versus repositioning again, would you make the same choice? Why or why not?’’ The responses fell into 3 broad groups: satisfied with outcome and would use the same treatment again, not satisfied with outcome and would not use the same treatment again, and those who were unsure of what they would do (Fig. 1). The largest group was those who answered that they were satisfied with the outcome and would use the same treatment again. One parent stated, ‘‘Yes, I believe that the helmet was the best option. I repositioned him from birth to 6 months with little results.’’ Another parent said, ‘‘Yes, the helmeting made a big difference and a noticeable change quickly. He looks like a normal kid now.’’ Those who used repositioning and were happy with the outcome said that it was easier and less expensive. The second largest group was those who were not satisfied with their child’s head shape. The theme that emerged from this group is that the child’s outcome did not meet their expectations. Responses from this group included some of the following statements: ‘‘Probably should have done the helmet’’ and ‘‘No, I do not believe the helmet did much, if anything, to correct my child’s head shape.’’ The third group was those who were unsure whether they would select the same treatment method again. The main theme that came from this group is that the parents feel that they were not offered or do not recall being offered both types of therapy. Statements

Long-term Satisfaction of DP Outcomes

TABLE 1. Demographic Characteristics of Survey Respondents Demographic Child’s sex Male Female Children who did use a helmet Yes No Insurance coverage of helmet Yes No Child’s race White African American/black Asian Hispanic/non-Latino Other Pregnancy associated with Singleton birth Twins Triplets Child with DP was the first the mother gave birth to Yes No Weeks of pregnancy for this child 937 wk 33Y36 wk 30Y32 wk G29 wk Did the child have torticollis? Yes No Mother’s age at time of childbirth Mean age Age range Mother’s highest level of education Lower than high school High school graduate/GED Some college College graduate Advanced college degree Household income G$25,000 $26,000Y$50,000 $51,000Y$75,000 $76,000Y$100,000 9$100,000 Chose not to answer Age of child at time of treatment G3 mo 4Y6 mo 7Y9 mo 910 mo Distance from DP clinic 0Y25 miles 26Y50 miles 51Y75 miles 76Y100 miles 101Y150 miles 9150 miles

Percentage

n

70.4% 29.6%

305 128

72.7% 27.3%

323 121

58% 42%

199 144

93.1% 1.4% 2.3% 0.5% 2.8%

404 6 10 2 12

85.9% 13.9% 0.2%

377 61 1

45.7% 54.3%

199 236

72.4% 23.7% 3% 0.9%

315 103 13 4

40% 60%

173 260

31.2 y (SD, 4.8) 17Y47 y 2.1% 5.1% 15.7% 42.4% 34.8%

9 22 68 184 151

6.1% 9.5% 17.5% 29% 23.6% 14.3%

27 42 77 128 104 63

8.3% 69.2% 17.6% 4.9%

36 299 76 21

51% 21.9% 7.5% 4.3% 9.6% 5.7%

224 96 33 19 42 25

GED, General Educational Development.

* 2014 Mutaz B. Habal, MD


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TABLE 2. Parental Satisfaction With Treatment Choice

Helmeted Repositioned Total

Parent Would Make the Same Treatment Choice Again

Parent Would Not Make the Same Treatment Choice Again

Total

271 81 352

7 9 16

278 90 368

included ‘‘helmeting was the only choice we knew about. We were not told about repositioning’’ and ‘‘Not given option of helmeting.’’ The second open-ended question was ‘‘What advice would you give to another family making the decision of using a helmet versus repositioning?’’ These replies could be grouped into 2 large groups, those in favor of helmeting and those in favor of repositioning. Seven themes materialized from these 2 groups: 1. Try repositioning before use of the helmet. One parent stated, ‘‘I would advise trying repositioning for a month or two, and if there is novisible improvement, the helmet therapy is the way to go.’’ 2. Treatment should be based on the severity of the DP. Helmets should be used for more severe cases; and repositioning, for milder ones. 3. Follow the advice of a medical professional. 4. Consider the cost of the helmet in treatment decision. 5. Seek treatment early and do not wait. The parents advised others ‘‘Not to wait, to do something when you notice a problem’’ and ‘‘start as soon as possible.’’ 6. ‘‘Do a lot of research’’ and ‘‘educate yourself first, before making any decisions.’’ 7. ‘‘Do what feels right’’ and ‘‘whatever works best for your family.’’ The third open-ended question was ‘‘Is there anything else that factored into your decision making about which treatment option to choose that I did not ask today?’’ Five major themes were demonstrated. 1. The parents factored in sex and hairstyles (girls would have hair to cover up asymmetry) and cosmesis. One parent stated, ‘‘We wouldn’t have been as concerned with a girl, but because we had a boy we were thinking of his head shape as a grown-up with little to no hair covering his head,’’ and another said, ‘‘No, we just didn’t want our daughter to have a cosmetic difference from other kids. For us, deciding on the helmet was 99% for cosmetic reasons.’’ 2. The parents wanted to do what they felt was best for their child. A parent said, ‘‘I would have done anything for my child. I wanted his head to look as normal as possible.’’ 3. Issues related to transportation, time off work, and distance traveled for follow-up appointments. This was supported by statements such as ‘‘We drove 2.5 hours each way for our appointments, but it was well worth it!’’ and ‘‘Time off work was main concern.’’ 4. Concern for comfort and appearance of the helmet. A parent said, ‘‘I thought the helmet would be uncomfortable for my baby and I didn’t want to have to explain it to people,’’ and another stated, ‘‘Yes, I didn’t want people staring at my son’s helmet and making him self-conscious.’’ 5. Follow professional advice.

DISCUSSION

Losee et al7 performed a retrospective chart review and follow-up telephone survey of patients treated at the Cleft-Craniofacial Center at Children’s Hospital of Pittsburgh regarding factors that influence the development of DP. The findings of their study were very similar to the findings of the current study (Table 4). With such similarities, it can be assumed that the findings of these cohorts are fairly representative of the DP population. Deformational plagiocephaly is typically found in males more than females. It has been hypothesized that this is related to the fact the male fetus is often larger and less flexible and has a more rapidly growing head circumference.22 Deformational plagiocephaly also seems to be correlated with higher socioeconomic status. That may be because most infants with DP are born to white women in their 30s, with college educations and higher household incomes. Minority women are more likely to put their infants to sleep in the prone position, putting them at a greater risk for sudden infant death syndrome but at lower risk for DP.22 Advanced education often delays childbearing for women. This may lead to better health care options and compliance with the recommendations of back sleeping but a greater risk for DP.7,22,24 Infants with torticollis are also at greater risk for the development of DP. This may be a function of intrauterine positioning or of birth trauma. Multiple gestation pregnancy is another known risk factor. There is greater intrauterine constraint on the fetuses in twins and higher-order multiple pregnancies. The incidence of twinning in this study, as well as others, is greater than that of the general population.7,22

Parental Perceptions This research demonstrated that the parents are, in general, satisfied with their child’s long-term head shape. These finding are similar to what other researchers have established.23,25,26 Steinbok et al26 (2007) reported that 95% of parents whose child had used a helmet and 92% of parents whose child used repositioning had minimal to no concern about head shape at 5 years or older. This research established that, among those who used a helmet, 93.5% (n = 292) rated their satisfaction as satisfied or very satisfied. The ratings were similar in the repositioned group, with 83.7% (n = 98) rating their satisfaction as satisfied or very satisfied. In addition to the improvement in head shape over time, there are several other possible explanations for this. The first is that as the child’s hair fills in and reaches more of an adult thickness and texture, mild asymmetry may be camouflaged. This is especially true with children who have longer hair. Residual asymmetry may be more apparent in children with shaved heads or very short haircuts. Parents also note that the asymmetry is more apparent when the child’s hair is wet.23 The second possibility is that parents get used to the asymmetry over time and seem not to notice it as much as they once did. A third possibility is that parents may rationalize that their treatment choice was for the best and that no problems have resulted from their decision. This may be especially true for those who used a helmet. Because they did more than just repositioning, they may feel more satisfied with the outcome. When the parents were asked whether they would choose the same treatment again, more would choose helmet again over the repositioning. Only 2.5% (n = 7) of those who used a helmet would not choose the same treatment again, whereas 11% (n = 9) would not choose repositioning again. This leads to the tentative TABLE 3. Factors Predicting DP Treatment Choice P

Odds Ratio

0.030 0.000

1.399 4.572

Factors

Demographics Most of the demographic findings in this study are similar to the findings reported by other authors in the DP literature.5,7,8,20Y23

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Time off work Severity of DP (mild Y severe) at intake






FIGURE 1. Groups and themes noted in the first open-ended question.

conclusion that there is a higher level of satisfaction with the helmet. As noted by others, this could be due to the fact that the parents who did not opt to use the helmet still have some feelings of guilt about not ‘‘doing everything’’ to treat the child and may feel that the child would have had a better long-term outcome had the helmet been used.26

Factors That Influenced Treatment All children in this survey were seen by the same provider in the same DP clinic. It is standard procedure in this DP clinic to leave the final treatment choice up to the parent(s). Families are never told that their child has to use a helmet or their child needs only positioning. Parents always have the final say in the treatment decision. The survey results demonstrated that severity played the greatest role in the parents deciding whether to use a helmet or repositioning. The greater the severity was, the more likely the parents were to choose a helmet. This was followed by time off

from work. If the parents were willing and/or able to take time off work, they were more likely to choose helmeting over positioning. Insurance coverage of the helmet is often considered to be a barrier to obtaining this treatment because helmets can range from $1500 to $5000, and many insurance companies will not pay for the treatment.10,27 The population served in this DP clinic is represented by approximately 40% Medicaid and 60% private insurance. Helmets are frequently covered by Medicaid. Coverage with private insurance varies widely. Another factor that is often considered an obstacle to helmet treatment is the distance families have to travel to the DP clinic for follow-up care. Of the survey respondents for this research, 72.9% (n = 320) lived within 50 miles of the DP clinic. However, the families that lived greater than 50 miles away did not note that distance traveled to the DP clinic was a factor that influenced treatment. In the DP clinic, parents frequently verbalize that they would be more likely to treat their male child with a helmet over a female child. This is due to societal norms of males typically wearing



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TABLE 4. Comparing Demographic Findings Demographic Sex Male Female Race White Pregnancy associated with Singleton birth Twins Triplets Weeks of pregnancy 937 wk Associated torticollis Yes No Mother’s age at time of childbirth Mean age Age range Mother’s highest level of education College graduate Advanced college degree Household income $50,000Y$100,000 9$100,000 Age at time of treatment 4Y6 mo

Current Findings

Losee et al (2007)

70.4% 29.6%

70% 30%

93.1%

95%

85.9% 13.9% 0.2%

84.7% 12.4% 2.9%

72.4%

85.7%

40% 60%

20% 80%

31.2 y 17Y47 y

31.7 y 18Y42 y

42.4% 34.8

62% 23%

46.5% 23.6%

52% 18%

69.2%

Mean, 6.5 mo

shorter hairstyles as they get older, making any residual asymmery more apparent. However, this research did not find sex as an influencing factor. It was hypothesized that parental perception of the severity of the DP will influence their treatment choice, families that live in closer geographic proximity to the clinic and families with insurance coverage for helmet therapy will be more likely to use this option, and the ability of the family to travel to and from the clinic (ie, time off work and transportation) would be important factors in the treatment of DP. The findings from this study suggest that only severity of the DP and time off work were significant factors in predicting DP treatment with a helmet. Reasons for this may involve several different factors. One factor is that most of the sampled population lived within 50 miles of the DP clinic; therefore, distance traveled was not much of an issue. A second is that with the higher levels of education of the mothers and the higher household incomes, transportation and cost of helmet did not seem to be an issue with this more affluent group. A third possibility is that DP is not life threatening and ultimately focused more on appearance than function.

Qualitative Analysis of Open-Ended Questions The major theme that emerged throughout all 3 open-ended questions is that the parents are, in general, satisfied with their child’s long-term outcome of head shape. Most of the parents are happy with the treatment they selected, and most would choose the same treatment again. Several of the factors that were used as possible predictors of treatment choice emerged as recurring themes in the open-ended questions, although these were not found to be statistically significant factors. Severity seemed to be the factor that came up most. The parents felt that more severe cases should be treated with a helmet; and milder cases, with repositioning. Cost of the helmet was another factor that was frequently mentioned; however, few stated that they based treatment solely on cost. Some responses did mention sex, although this factor was also not significant in

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predicting treatment. Issues of transportation, time off work, and travel also presented as a theme. The fact that many of the factors analyzed were mentioned in the open-ended responses leads one to believe that these are important to parents, although these may not have statistical significance in predicting treatment choice by parents. Trust of professional opinion also seemed to be quite important to most of the parents. The theme of age, younger is better, was also quite prevalent. Many of the parents were concerned about comfort of the child in the helmet and what others would think of the child if he/she was wearing a helmet (ie, if there is something wrong with the baby that he/she needs the helmet).

Limitations All data were collected from 1 craniofacial center and may not be generalizable to other populations. Parental opinion may result in a participant bias. Parents may be satisfied with the child’s head shape and feel that it looks good although significant asymmetry remains. Parents may be hypersensitive to very minor asymmetry and feel that head shape is still abnormal. There may be a recall bias on factors that influenced parental treatment choice because the surveys were sent to families of children who were seen up to 8 years ago. The surveys were anonymous so that these could not be correlated with actual clinical data. Most of the survey respondents helmeted their children; therefore, this may have biased the results. The provider may have influenced treatment choice. There may be other factors not evaluated by this survey that influenced treatment, for example, parental opinion of ease of helmet use versus repositioning.

CONCLUSIONS The parents are satisfied with the long-term outcome of head shape. More parents who used the helmet would choose the same therapy again versus those who used repositioning. Severity of the DP at time of intake had the greatest influence over choice. The more severe the DP was, the more likely the family was to choose helmeting. Taking time off from work for follow-up appointments was the second greatest determining factor with helmeting. Those who could take time off work for follow-up were more likely to helmet. Factors such as insurance coverage of the helmet and travel distance to the clinic really did not seem to matter in regard to decision making about treatment.

ACKNOWLEDGMENT The authors thank St. Louis Children’s Hospital Foundation.

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