Abstract
The diagnosis and treatment of developmental dysplasia of the hip (DDH) can be stressful for parents, often worsened by inadequate information. The primary aim of this study is to assess whether the information preferences of parents of children with DDH, identified in a prior single-center study, are generalizable across the Netherlands. A secondary aim is to compare these preferences with the perspectives of pediatric orthopedic surgeons. An online survey was conducted between September and November 2023 among parents of children with DDH and pediatric orthopedic surgeons in the Netherlands. Based on prior qualitative research, the survey included closed- and open-ended questions regarding the content, timing, and format of information delivery. A total of 177 parents and 20 pediatric orthopedic surgeons completed the survey. Median response scores were ≥7 across all questions, suggesting that previously identified parental preferences are applicable nationwide. Both parents and pediatric orthopedic surgeons emphasized the importance of accessible and understandable information to people at all levels of society. Parents strongly preferred reliable DDH-related information before diagnosis and valued resources they could revisit at home, such as websites or printed materials. However, parents showed minimal interest in a smartphone application, a preference that contrasted with pediatric orthopedic surgeons’ perspectives. This nationwide study provides a comprehensive overview of the information preferences of parents in DDH care. Comparing these findings with the perspectives of pediatric orthopedic surgeons offers valuable insights for optimizing information delivery. This can help refine information delivery strategies, ultimately enhancing disease understanding, parental satisfaction, and treatment adherence.
Keywords: developmental dysplasia of the hip, hip dysplasia, information, parents, pediatric orthopedic surgeon
Introduction
Developmental dysplasia of the hip (DDH) is the most common hip disorder in newborns [1]. The term DDH refers to a wide spectrum of pediatric hip conditions, ranging in severity from stable hip dysplasia to hip dislocations. Late or undiagnosed DDH can, in a later stage, lead to pain, gait problems, and early adulthood hip osteoarthritis [2]. The uncertainty associated with the diagnostic and treatment process significantly impacts both parents and children early in life [3,4]. This stressful period – marked by practical, emotional, and social challenges – is often worsened by a lack of understandable and reliable information about the disease [3,4].
Gaining insight into the information needs of parents is essential to optimize the quality of pediatric orthopedic care and improve parental satisfaction [5]. Nevertheless, there is limited knowledge about the information preferences of parents caring for a child with DDH. A survey among Australian parents found that 60.6% of them lacked practical information and 41.4% felt not or minimally informed about the diagnosis during the treatment of their child with DDH [4]. A recent qualitative study highlighted that parents of children with DDH reported insufficient pre-hospital information, struggled navigating through unfiltered online content, and lacked practical information [6]. However, the broader applicability of these findings to other hospitals and healthcare systems has been questioned, as this was a single-center study. Considerable variability exists among hospitals in terms of the number of DDH cases treated annually, the local infrastructure for DDH care, and the involvement of various healthcare professionals. Further research is therefore needed to verify the information preferences of parents in other hospitals.
In response to the unmet information needs of parents of children with DDH, there is increasing reliance on the internet as the primary source of information [7]. Over 80% of parents with a child diagnosed with a pediatric orthopedic condition search for online resources before their first consultation with a pediatric orthopedic surgeon [8]. However, the readability, understandability, and actionability of online information on DDH are questionable [9]. Much of the online content on DDH is written at an average reading grade level of 12 [9], which contrasts with the American Medical Association’s recommendation that patient education materials be written at a 6th-grade reading level or lower [10]. This discrepancy underscores the urgent need for more accessible and easily understandable information that accommodates individuals across all levels of society.
To address these challenges, it is essential to gain a deeper understanding of the specific information needs of parents. The primary aim of this study is to assess whether the information preferences of parents of children with DDH, identified in a previous single-center study, are generalizable on a national scale across the Netherlands. A secondary aim is to compare these parental information preferences with the perspectives of pediatric orthopedic surgeons. This comparison may reveal important information topics valued by parents, but potentially overlooked by pediatric orthopedic surgeons.
Methods
Survey development
An online survey was designed based on the findings from a qualitative study (Supplementary File 1 and 2, Supplemental digital content 1, http://links.lww.com/JPOB/A124) [6]. The survey was reviewed by two board members of the Dutch Patient Association for DDH (Vereniging Afwijkende Heupontwikkeling) and piloted among three parents to assess clarity and comprehensibility. The survey comprised four sections:
-
1.
Respondent characteristics.
-
2.
Content of information across three phases of the healthcare trajectory:
-
(a)
screening phase,
-
(b)
diagnostic and treatment phase,
-
(c)
follow-up phase.
-
(a)
-
3.
Timing of information.
-
4.
Format of information.
Parents were asked to rate the importance of receiving information on different topics within the DDH healthcare trajectory. Pediatric orthopedic surgeons were similarly asked to rate the importance of giving this information in their DDH practice. Answer options varied from 1 (low importance) to 10 (high importance). For parents, the total number of survey items ranged from 44 to 47, depending on their child’s treatment type. Pediatric orthopedic surgeons were presented a total of 55 items. Each section concluded with an open-ended question asking respondents if they felt any information related to that section was missing in the provided questions. Section two, focusing on information content, ended with the question to rank the top-5 most important topics. Respondents could review and modify their answers throughout the questionnaire. Time to complete the survey was on average 10 min. The survey was administered using Enalyzer (Copenhagen, Denmark) between September and November 2023.
Study population
Parents of children previously diagnosed with hip dysplasia, aged 6–18 months, were eligible for inclusion. Recruitment took place through two approaches. First, recruitment occurred via letters sent directly to parents from five hospitals in the Netherlands (one academic and four general hospitals). Second, the Dutch Patient Association of hip dysplasia facilitated recruitment by inviting parents through their private Facebook group. Pediatric orthopedic surgeons were invited to participate through the Dutch Paediatric Orthopaedic Society which is affiliated with the European Paediatric Orthopaedic Society. The survey was accessible online via a link and QR code. Parents and pediatric orthopedic surgeons were granted access to the survey after giving their informed consent to participate in the opening question of the survey. Participation in the survey was entirely anonymous, as no directly identifying information was collected. Respondents did not receive any financial incentives for completing the survey.
Diagnostic and treatment protocol
In the Netherlands, universal clinical screening combined with selective ultrasound screening is used. Children were diagnosed based on the Graf classification and treated according to the national guideline [11]. Treatment options were: active surveillance (= observing hip development with repeated ultrasound imaging), Pavlik harness, closed reduction, or open surgical reduction with cast immobilization. In case of insufficient treatment response, a combination of treatment options was possible [11]. In the Netherlands, the time interval between the diagnostic ultrasound and consultation with a pediatric orthopedic surgeon has some variation. Some hospitals utilize a one-stop-shop system, where the ultrasound and consultation take place on the same day. Whereas in other hospitals, parents may have to wait several days between these appointments.
Statistical analysis
The study was conducted and reported following the CHERRIES guidelines (Supplementary file 3, Supplemental digital content 2, http://links.lww.com/JPOB/A125) [12]. Only data from participants who completed all items were included in the analysis. Descriptive statistics, including median, interquartile ranges, frequency, and percentages, were calculated to summarize the survey responses. To compare responses between parents and pediatric orthopedic surgeons, a Mann–Whitney U test was employed with a significance set at P < 0.05. Data visualization was achieved through bar charts and boxplots. The top-5 most important information items were identified based on their frequency in the top-5; items ranked first received 5 points, while those ranked fifth received 1 point. The total points for each item were divided by the number of respondents. Data analysis was performed using Microsoft Excel (Redmond, Washington, USA) and SPSS Statistics V.29.0.0.0 (IBM Corp, Armonk, New York, USA).
Results
A total of 242 parents of children with DDH and 25 pediatric orthopedic surgeons participated in the online survey. Of these, 177 parents (73%) and 20 pediatric orthopedic surgeons (80%) completed the survey in its entirety (Tables 1 and 2). The participants in this study reflected a representative cross-section of the DDH population in the Netherlands (Fig. 1).
Table 1.
Demographics of participating parents
| Characteristic | Number (%) |
|---|---|
| Age <25 years 25–29 years 30–34 years 35–39 years >39 years |
5 (3%) 30 (17%) 89 (50%) 48 (27%) 5 (3%) |
| Sex | |
| Male Female |
21 (12%) 156 (88%) |
| Education level Elementary school Lower general secondary education Higher general secondary education Secondary vocational education Higher professional education University |
2 (1%) 2 (1%) 3 (2%) 43 (24%) 81 (46%) 46 (26%) |
| Recruitement for survey via Hospital Patient association Both |
103 (58%) 70 (40%) 4 (2%) |
| Treatment type childa Active surveillance Pavlik harness Closed reduction & spica cast Surgery |
65 (37%) 112 (63%) 44 (25%) 19 (11%) |
A combination of multiple treatments was possible.
Table 2.
Demographics of participating pediatric orthopedic surgeons
| Characteristic | Number (%) |
|---|---|
| Age 35–39 years 40–44 years 45–49 years 50–54 years 55–59 years ≥60 years |
5 (25%) 5 (25%) 1 (5%) 4 (20%) 2 (10%) 3 (15%) |
| Sex Male Female Unknown |
10 (50%) 9 (45%) 1 (5%) |
| Hospital setting Academic hospital General hospital |
12 (60%) 8 (40%) |
| Years of expertise with treatment of DDH <5 years 5–10 years >10 years |
6 (30%) 3 (15%) 11 (55%) |
| Number of new DDH patients treated yearly 25–50 patients 50–100 patients 100–200 patients >200 patients |
4 (20%) 8 (40%) 6 (30%) 2 (10%) |
DDH, developmental dysplasia of the hip.
Fig. 1.
(a) Geographical distribution of participating parents based on the hospital where their child was treated. (b). Geographical distribution of participating pediatric orthopedic surgeons according to the location of the hospital where they work.
Generalizability of information preferences
Parents responded with a median score of 7 or higher to all items in the screening phase, 10 to all items in the diagnostic and treatment phase, and 8 or higher to all items in the follow-up phase (Figs. 2–4). Three main topics emerged from the open-ended questions that were not captured in the closed-ended questions.
Fig. 2.
Overview of the importance of information in different phases of the patient journey. Boxplots presented as median (number) + interquartile range.
Fig. 4.
Top-5 most important questions on developmental dysplasia of the hip.
1. Being better prepared for the diagnosis
There was a strong desire by parents to be better prepared for the official diagnosis. Numerous remarks were made by parents who received little or no information before the diagnosis, which left them feeling shocked when the diagnosis was confirmed.
‘We barely got any information before the official diagnosis, leaving us unprepared for the treatment with a Pavlik harness. It was a shock to us. In the future, we would appreciate having some general information in advance to help us be better prepared.’
2. Accessible and understandable information
Parents emphasized the need for accessible and understandable information for parents in all layers of society. Pediatric orthopedic surgeons supported this, stressing the importance of providing information in multiple languages in a multicultural society.
‘Using simple and understandable language in patient leaflets and websites is often underrated. It is important to make this information accessible both online and offline. For instance, pilot test the information with the parents to ensure it is clear.’
3. Ability to review information at home
Parents commonly expressed the need for information to be provided repeatedly throughout the screening, diagnostic, treatment, and follow-up phases. They particularly stressed the importance of receiving verbal information at the time of diagnosis, along with the option to review and re-read this information at home.
‘The amount of verbal information you receive at the moment of diagnosis is a lot and hard to retain. Hearing the diagnosis feels like being on a rollercoaster as a parent. Making it challenging to remember everything. Therefore, it is crucial to have the ability to re-read the information at home on a trustworthy website or in a leaflet.’
Content of information
There was a broad consensus between the importance parents placed on the information they wanted to receive and the importance pediatric orthopedic surgeons placed on the information they intended to provide. Yet, some notable differences were observed. In the screening phase, parents placed greater importance on receiving information on: prevalence, risk factors, diagnostic process, treatment options, and overview of the patient journey compared to pediatric orthopedic surgeons (Fig. 2a). In the diagnostic and treatment phase, parents rated information on the duration of treatment, advantages and disadvantages of treatment, and working mechanism of treatment higher than pediatric orthopedic surgeons (Fig. 2b). In the follow-up phase, parents cared more about information concerning the treatment’s impact on their child, longterm consequences and longterm follow-up compared with pediatric orthopedic surgeons (Fig. 2c).
Parents of children in the active surveillance treatment group indicated that information pertaining to their role in the treatment process was more important to them compared with pediatric orthopedic surgeons (Fig. 3a). In the Pavlik harness treatment group, information on applying the Pavlik harness under supervision and practical information had a higher priority for parents compared with pediatric orthopedic surgeons (Fig. 3b). Among parents whose children underwent surgery, notable differences regarding information on the duration of hospital stay, duration of recovery, allowed movements and activities after surgery, and tips from other parents were seen between parents and pediatric orthopedic surgeons (Fig. 3c).
Fig. 3.
Overview of the importance of information on different treatment options. Boxplots presented as median (number) + interquartile range.
Regarding the top-5 most important information topics, parents included information from all three phases of the patient journey (screening phase, diagnostic and treatment phase, and follow-up phase) in their top-5, whereas pediatric orthopedic surgeons did not prioritize items from the follow-up phase in their top-5 (Fig. 4). There was consensus on the significance of receiving information regarding ‘an overview of the diagnostic and treatment process’ during the screening phase, with parents ranking this as their second priority and pediatric orthopedic surgeons as their top priority. Noteworthy was the emphasis placed by parents on the follow-up phase, as they included two items in their top-5 ‘What is the impact of the treatment on my child?’ and ‘What are red flags during and after treatment?’.
Timing of information
Parents reported a significantly higher level of importance to the statement ‘I want to be informed with general information on DDH before the first hospital visit’ compared with pediatric orthopedic surgeons (Fig. 5a). Furthermore, it appeared that parents strongly preferred a one-stop-shop system, where diagnostic hip ultrasound and official diagnosis occur consecutively on the same day (Fig. 5b). A comparison between parents whose children were treated in a hospital with a one-stop shop system and those treated in a hospital without it, showed no difference in the strong desire for a one-stop shop system.
Fig. 5.
Boxplots presented as median (number) + interquartile range.
Format of information
Verbal explanation (85% of parents, 95% of pediatric orthopedic surgeons) was the most preferred format of information (Fig. 6). Followed by information on a website (46% of parents, 75% of pediatric orthopedic surgeons) and a printed leaflet (25% of parents, 45% of pediatric orthopedic surgeons). Information via a smartphone application was less appealing to parents (16%) compared with pediatric orthopedic surgeons (45%). The combination of verbal explanation and a website was most preferred, chosen by 43% of the parents. This was followed by a combination of verbal explanation and a printed leaflet (40%). Both parents (median 8) and pediatric orthopedic surgeons (median 7) emphasized the importance of visual information regarding the diagnosis and the treatment effect.
Fig. 6.
What is your preferred format of receiving information on the diagnosis and treatment of DDH?
Discussion
This nationwide study provides a comprehensive overview of the information preferences of parents in DDH care and offers a unique comparison with the perspectives of pediatric orthopedic surgeons on information delivery. The discrepancies between parental preferences and pediatric orthopedic surgeons’ perspectives offer valuable insights that can guide future improvements in the communication and delivery of information for DDH care.
Gaining insight into the parental information needs can assist both national and international pediatric orthopedic societies, as well as hospitals, in developing tailored DDH information resources. This is an essential element of patient-centered care [13] and is considered a prerequisite for a genuine partnership between parents and the pediatric orthopedic surgeon [14]. Conversely, scrutinizing the perception of pediatric orthopedic surgeons on information delivery in hip dysplasia care is crucial. Research indicates that poorly delivered information is the major factor contributing to patient dissatisfaction with the communication of orthopedic surgeons [15]. A survey by the American Academy of Orthopaedic Surgeons revealed that while 75% of orthopedic surgeons believed they communicated satisfactorily with their patients, only 21% of the patients agreed [15].
Based on the findings from this nationwide survey, where parents rated all questions with a median score ≥7, we can infer that the results of our previous single-center qualitative study on information needs and preferences of parents on DDH [6] are applicable on a nationwide level in the Netherlands. The diagnosis of DDH is an overwhelming experience for parents [3]. They are often inundated with an abundance of information during this stressful time [3]. This nationwide survey highlights a strong parental wish to receive general information about DDH before the diagnosis is made. Providing parents with this information beforehand can help them feel more prepared and engage as effective partners during the diagnostic process, potentially reducing anxiety and uncertainty [3]. Additionally, new medical information is better retained when it aligns with existing knowledge [16]. However, care should be taken not to provide overly detailed information about DDH before the official diagnosis, as most infants referred to a pediatric orthopedic surgeon do not receive a DDH diagnosis; the condition is often ruled out during the clinical visit. This raises the question of whether potentially concerning information should be shared with families when the likelihood of their child having DDH is relatively low.
DDH has a broad range of treatment options. Parents attribute the highest importance to information on the working mechanism, the duration of treatment, and the advantages and disadvantages of treatment. Maintaining treatment adherence is paramount to prevent treatment failures and achieve maximum outcomes. It has been shown that clearly explaining the rationale behind a treatment is pivotal for ensuring treatment adherence in general orthopedic care [17]. Interestingly, pediatric orthopedic surgeons rated ‘information on the working mechanism’ significantly lower compared with the parents. Additionally, parents of a child who received active surveillance as a treatment indicated that information pertaining to their role in treatment was more important to them compared with pediatric orthopedic surgeons. Parents want to know what they can do to stimulate hip development and which activities to avoid. This desire of being actively involved in the treatment process aligns with a previous study on parental experiences of having a child in an ICU [18].
In today’s digitalized society, there is a numerous amount of medical information resources available, including smartphone applications that offer information 24/7 [19]. Surprisingly, only 16% of the parents in the current study were interested in a smartphone application as a resource for information on DDH, compared to 45% of pediatric orthopedic surgeons. This disparity may be attributed to the concept of ‘app overload’ as described by Van Velsen et al. [20] The rapid proliferation of medical health apps in recent years has led to an overwhelming number of smartphone applications, making it challenging for users to navigate this abundance effectively [20]. Additionally, research indicates that when it comes to critical information, individuals often prefer written formats over smartphone applications [21]. Moreover, multiple studies suggest that online information serves as a supplement rather than a replacement for verbal information provided by healthcare professionals [15,22].
Parents place significant value on the ability to review and re-read medical information at home, particularly in the context of a stressful situation such as the diagnosis of DDH. Research indicates that during such stressful moments, parents may find it difficult to effectively process the extensive information provided to them. It has been noted that 40–80% of medical information provided by healthcare professionals is forgotten immediately, and of what is remembered, half is recalled incorrectly [23]. Given these challenges, it becomes essential for parents to have opportunities to review and re-read the medical information they receive. This allows them to digest the information at their own pace, clarify uncertainties they may have, and improve retention of important details related to their child’s condition and treatment plan.
Parents prioritize a one-stop-shop system where both the diagnostic hip ultrasound and pediatric orthopedic surgeon review take place on the same day. This preference was also highlighted in a previous qualitative study, which revealed parental dissatisfaction when they had to wait several days for the pediatric orthopedic consultation following the hip ultrasound [3]. Meanwhile, many – though not all – hospitals in the Netherlands have implemented a one-stop-shop system. Interestingly, the United Kindom’s national guideline supports this parental preference by recommending that hip ultrasound should be conducted in a one-stop-shop setting [24,25]. Implementing this approach in all hospitals could reduce the stress associated with waiting times between diagnostic procedures and consultations with pediatric orthopedic surgeons.
There are several limitations to acknowledge in this study. First, this study design is susceptible to recall and selection bias. We have attempted to minimize the recall bias by including only parents of children aged 6–18 months, who had recently undergone treatment for DDH. Second, as this study was conducted in the Netherlands, the generalizability of our findings to countries with different DDH screening systems may be limited [26]. Finally, survey questions inherently carry some level of subjectivity, which could unintentionally influence participant responses and lead to misinterpretations. To address this concern, predistribution testing was conducted among parents, pediatric orthopedic surgeons, and the Dutch patient association for hip dysplasia. Additionally, the inclusion of open-ended questions alongside closed-ended ones aimed to ensure comprehensive data collection without overlooking important insights.
This study is the first to broadly identify the parental information needs in hip dysplasia care and compare them with the perspectives of pediatric orthopedic surgeons. Our findings can guide hospitals and national and international pediatric orthopedic societies to tailor their routine information pack to the parental needs. Based on our study’s findings, we advocate for three fundamental principles in providing information for DDH care.
Providing trustworthy information on DDH before the diagnosis, which can help parents better understand the condition and prepare for potential treatment options.
Ensuring that information is easily accessible and comprehensible to people at all levels of society.
Allowing parents to re-read and review the information at home, enabling them to digest the details at their own pace and seek clarification on any uncertainties they may have.
By aligning the information provided by the pediatric orthopedic surgeons with the needs of parents, we aim to further optimize the care for children with DDH.
Acknowledgements
W.T.: study design, data collection, data analysis, statistical analysis, and writing – original manuscript. J.T.: study design, data collection, data analysis, supervision, and writing – review and editing manuscript. M.V.V.: data collection, data analysis, writing – review and editing manuscript. C.V.B., S.G., A.M., A.B., and F.V.D.: data collection, writing – review and editing manuscript. M.V.d.S.: study design, data analysis, supervision, writing – review and editing manuscript.
Conflicts of interest
There are no conflicts of interest.
Supplementary Material
Footnotes
Supplemental Digital Content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's website, www.jpo-b.com.
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