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McGill University Faculty of Medicine and Health Sciences, Montreal, Quebec, CanadaHarvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada
Good risk communication is essential both in the preoperative shared decision-making process and in postoperative follow-up care in pediatric surgery.
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What new information is contained in this article?
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Amongst the various patient-preferred risk communication methods, technology-based communication and written information appear most preferred by families of children undergoing surgery.
Abstract
Background
Effective patient-surgeon communication is vital in pediatric surgical practice. However, family (including child) preferences for the format and content of risk communication information are largely unknown. In order to optimize the shared-decision making process, this scoping review explored the family-preferred methods for risk communication in pediatric surgery.
Methods
A search was conducted in 7 databases from inception until June 2020 to identify family risk communication preferences in pediatric surgical patients, with language restricted to English and French. Two independent reviewers completed the screening in Rayyan software following PRISMA protocol. Included publications were reviewed for data extraction, analyzed, and assessed for risk of bias using standardized instruments.
Results
A total of 6,370 publications were retrieved, out of which 70 were included. Studies were predominantly from ENT (30.0%), general surgery (15.7%), and urology (11.4%). Family-preferred risk communication methods were classified as visual, verbal, technology-based, written, decision aids or other. Technological (32.4%) and written tools (29.7%) were most commonly chosen by families as their preferred risk communication methods. Written tools were frequently used in general surgery and urology, while technology-based tools were widely used in ENT. Most studies were cross-sectional and had a significant risk of bias.
Conclusion
Eliciting families’ preferences for risk communication methods is critical for the implementation of shared decision-making. Different risk communication media appear to be preferred within specific surgical domains. To further improve shared-decision making in pediatric surgery, the development and usage of robust, validated risk communication tools are necessary.
Arthega Selvarajan was funded by the McGill University Medical Class of 1964 Summer Research Bursary.
Dan Poenaru was funded by a Junior Investigator (J1) Salary Award from the Fonds de Recherche du Québec en Santé.
Introduction
The importance of effective communication in pediatric surgical practice cannot be overstated. A pediatric surgeon is trained to provide whole-patient-centered care through preoperative, operative and postoperative encounters with the patient; which in this field includes the parent/caregivers alongside the child or adolescent [
]. In some instances, up to 30% of parents experience uncertainty about the course of action to take (i.e. decisional conflict) and distress or remorse after the decision to have surgery [
Decisional regret after distal hypospadias repair: single institution prospective analysis of factors associated with subsequent parental remorse or distress.
]. Defined as a collaborative treatment decision process, SDM is recognized as an ideal model taking into consideration the patient’s preferences and values, as well as the physician’s clinical expertise with respect to risks, benefits and alternatives to treatment, in order to reach a consensus upon future management plans [
]. The transmission of risk information is considered to be the cornerstone of SDM, as it can directly influence the patient’s treatment preference.
Risk communication is defined as the “open, two-way exchange of information and opinion about risk, leading to a better understanding of the risk itself, and promoting better clinical decisions about management [
].” Previous literature has shown the beneficial effects of risk communication with Edwards et al.’s review emphasizing that treatment-specific interventions were associated with larger beneficial effects [
] The primary method of delivering risk information is often through verbal discussion.
However, this sole form of communication may be insufficient as it could result in poor patient retention, omittance of crucial risks and reduced patient recall [
]. Additionally, patients may have an even more difficult time adequately comprehending risk information due to the nature of surgical outcomes and actual probabilities of an outcome to occur in their particular case [
]. As Al-Taha et al. states, an inadequate understanding of surgical risks can undermine patient autonomy, decrease patient trust in the surgeon, and increase the likelihood of medicolegal action [
]. This can become particularly precarious in pediatric surgical care, where parents/caregivers assume the challenging role of proxy decision-makers for their children [
]. It is therefore imperative that adjuncts be utilized during risk communication.
Moreover, the manner in which the surgeon conveys information may strongly affect the patient’s preferences and risk perception of surgery, thus tools such as decision aids were developed to standardize the delivery of information [
]. However, they do not completely address the patient-specific concerns about lifestyle and health care, which could further influence the decision of a patient to proceed with surgery [
]. The main objective of this scoping review is to detail the patient-preferred methods of risk communication, in order to optimize information exchange in the pediatric surgical field.
Methods
We conducted a scoping review of the published literature to broadly look at risk communication preferences in pediatric surgery. The protocol for the study was designed in concordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews guidelines (PRISMA-ScR; refer to Supplementary Material A for checklist) and registered with PROSPERO (CRD42020196116), the international registry for systematic reviews [
]. A senior medical librarian (EG) searched the following databases from inception until June 22, 2020: Medline (Ovid), Embase (Ovid), Cochrane (Wiley), Global Health (Ovid), Web of Science (Clarivate Analytics), Africa Wide Information (Ebsco) and Global Index Medicus (WHO), and studies were limited to English or French. The search strategy used variations in text words found in the title, abstract or keyword fields, and relevant subject headings to retrieve articles looking at family or parent communication preferences, and shared decision-making in pediatric surgery (refer to the Supplemental Material B for the full search strategy). Embase conferences were excluded. The PRISMA-S extension was utilized for reporting (refer to Supplementary Material C for full checklist). A grey literature search was conducted separately, employing ProQuest and Google Search. Reference citations from included review articles were also searched. In keeping with the goal of this review to identify various patient-preferred modalities of risk communication, we excluded articles that focused on patient preferences for risk communication but did not mention specific modalities. References found were imported into EndNote X9, where duplicates were removed. Records were imported into the online platform, Rayyan to perform the screening [
]. In situations of uncertainty, the reviewers discussed the abstract in question to reach a conclusion. In cases of disagreement, conflicts were resolved by the senior author (DP). A full-text screen was then carried out on all included papers independently by AS and BA, and non-eligible studies were excluded.
Inclusion and exclusion criteria
Publications were included if they described a risk communication modality for patients and included some form of patient input, either qualitative or quantitative. All surgical disciplines were included. Studies were excluded if patients were over 18 years of age, if they did not include a risk communication modality, or included a modality but had no reference to patient input. This resulted in the inclusion of multiple study types, categorized mainly as randomized controlled trials, qualitative studies and cross-sectional studies.
Data Extraction
Following the full-text screen, all studies were reviewed and data was extracted. For each included publication the following was recorded: author(s), year, study design, country of origin, surgical specialty, surgical procedure, study population, risk communication modality discussed, method of patient input, and type of patient input.
Quality Assessment
All included publications were manually assessed for quality and risk of bias using established tools. Cross-sectional studies were assessed using the Joanna Brigg’s Institute (JBI) Critical Appraisal Checklist for Analytical Cross-Sectional Studies [
], while qualitative studies and randomized controlled trials were assessed using the respective Critical Appraisal Skills Programme (CASP) checklists [
]. Other study designs (i.e. case series and before-after studies) were assessed with Joanna Brigg’s Institute Critical Appraisal Checklist for Analytical Cross-Sectional Studies. To appropriately assess the included publications, some modifications were made to the CASP checklist for randomized controlled trials. Specifically, for question 4 (i.e. “Were patients, health
workers and study personnel ‘blind’ to treatment?”) we assessed whether studies single-blinded the researcher/healthcare professional from the modality; while for the open-ended questions (i.e. question 7/8) we utilized the probes suggested in the CASP checklist to enable the application of a Yes/Maybe/No grade to these questions [
As detailed in Fig. 1., a total of 6370 publications were retrieved from the literature search: 6368 from databases and 2 from other sources. Following the exclusion of duplicates, 6027 articles remained for screening. Of these, 5725 studies were removed during the title and abstract screen, leaving 312 articles for the full-text screen. This process excluded an additional 242 publications, thus 70 articles comprised the final set.
Citing all included studies, Table 1 describes the general characteristics of the reviewed studies. The majority of studies were based in the United States (45.7%), Canada (15.7%) and the United Kingdom (15.7%), with 12 additional countries comprising the remaining studies. Ten surgical specialties were represented, the most frequent being Ear, Nose and Throat Surgery (ENT) (30.0%), followed by general surgery (15.7%) and urology (11.4%).
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Comparing digital photography via email correspondence (PEC) to traditional telephone communication (TTC) for pediatric urology postoperative patients: a pilot, randomized, controlled trial.
Defining the Pathways of Parental Decision-making and Satisfaction Levels About Newborn Circumcision in a Setting Where Traditional Male Circumcision is Prevalent: An Online Survey Study.
Communicating risk information: the influence of graphical display format on quantitative information perception-Accuracy, comprehension and preferences.
Interactive web-based format vs conventional brochure material for information transfer to children and parents: a randomized controlled trial regarding preoperative information.
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Most studies focused on the parents/caregivers as the study population for communication modality preferences (74.3%), while 20.0% focused on the family as a unit (including both caregivers and children). Two publications (2.9%) studied children/adolescents as the main population, while the primary population for the remaining two studies was unclear/not reported. Eleven publications reported randomized controlled trials, 16 qualitative studies, 32 cross-sectional studies, and the remaining 11 included a mix of other study designs.
Risk Communication Modalities
As seen in Fig. 2. , 35 papers discussed technological modalities, 38 studied written communication, 21 evaluated verbal communication, 12 reported visual forms of communication, 5 addressed decision aids, and 6 focused on other modalities - with some discussing multiple modalities. Amongst the studies, technological (32.4%) and written tools (29.7%) were most commonly chosen by families as their preferred risk communication methods.
Patient preferences for risk communication modalities were reported by either testing a specific modality and soliciting feedback (40 studies), directly asking patients’ for their preferred modalities (25 studies) or reporting a mix of both patient tested and suggested modalities (5 studies).
Comparison of Tested Modalities
The most frequently tested modalities were hybrid written/visual tools, such as instructional cards or leaflets (11 studies), informed consent tools such as checklists (7 studies) and decision aids (5 studies).
Among studies testing a visual modality, 2 evaluated the use of 3D anatomical models among patients during consultations. Both studies found an improved level of understanding among patient families with the model. Another 2 articles evaluated the importance of pictures within the clinical consultation, both finding that the pictorial delivery of information was informative and effective.
The 5 articles which evaluated decision aids all noted improved patient family comprehension of treatment options and better perceptions of shared decision-making. Three of the 5 articles noticed lower decisional conflict and better certainty about the treatment plan with the use of a decision aid.
All technology-based modalities included in our review reported an increased patient understanding of surgical risk information. Three publications noted that messaging services reduced patient anxiety associated with the surgery. Studies that tested websites observed an increase in satisfaction with information transfer, whereas social media modalities were focused on education and testimonial transfer of knowledge. Notably, although the internet was widely utilized by patients, all patients still preferred to ultimately discuss surgical risk information with their respective surgical teams.
Out of the 20 articles testing written modalities, 11 noted that patients believed hybrid material, i.e. a combination of pictures and written material, were the most useful for comprehensively understanding the surgical process.
Comparison of Suggested Modalities
Multiple studies explored patients’ opinions for the most effective risk communication modalities. Out of all the studies, patients primarily chose healthcare professionals (11 studies), the internet (9 studies) and experience-based forums/support groups (8 studies) as their preferred form of risk communication. Twenty-four studies noted patients to prefer verbal forms of communication which included communications with healthcare professionals (11 studies), discussions in support groups (8 studies) and talks with family/friends (5 studies). Out of 25 studies in which patients suggested technological platforms as optimal risk communication tools, the patients mainly preferred either the internet/Google (9 studies) or specific videos/DVDs (5 studies). Twelve studies reported written modalities as a preferred risk communication method, with 5 studies favoring a list of complications as the preferred modality. Finally, only 4 studies noted pictures/photos as a preferred component of risk communication.
Study Quality
The results of the risk of bias assessment for the included studies is summarized in Fig. 3a - 3c. The study quality of the randomized controlled trials and qualitative studies was generally high, whereas the quality of the cross-sectional studies was mixed, ranging from high to low. The lower scores of the cross-sectional studies were due mainly to the JBI checklist criterion #3, as many studies had no comparator group, and #5-6, as many studies did not describe or employ strategies to mitigate potential confounders [
]. Among the qualitative studies, 10 out of 17 had unclear bias associated with the researcher’s participation in the study. As observed in Fig. 3a, 8 out of 11 randomized control studies were identified to have a high or unclear risk of bias with respect to intervention blinding. This was due to the inherent nature of risk communication modality dissemination, where generally the researchers and health care professionals were aware of the intervention being utilized, and hence were not blinded.
Fig. 3Critical Appraisal results for included studies.
With the current shift towards patient-centered care, the task of detailing the preferences of patients with respect to risk communication becomes paramount - confirming the need for this scoping review [
]. As noted in Fig. 4, the review identified that a majority of studies originated from three countries: United States, Canada and the United Kingdom. This is in keeping with the literature, and is understandable given that the primary languages explored within this review are English or French [
The review identified a paucity of studies investigating risk communication preferences of the entire family unit, with most publications addressing only the parents’/caregivers' preferences. The importance of including the children’s voices in the communication process has been previously stressed by the literature [
]. Furthermore, it has been reported that a large number of children undergoing elective surgery have developed maladaptive postoperative behavioral changes, such as nightmares and separation anxiety [
]. Children may benefit from being increasingly engaged and reassured within preoperative consultations. Hence, soliciting their preferences for risk communication is essential.
Preferred Modality by Surgical Specialty
As seen in Fig. 5a and 5b, our study indicated that a majority of articles came from the ENT specialty, followed by general surgery and urology respectively. It has been noted that an increased prevalence of elective same-day surgeries are performed in the aforementioned three specialties [
]. Moreover, previous literature identifies the need for increased patient-centered surgical decision-making, specifically with respect to elective same-day surgeries [
]. Contributing to this knowledge gap, our findings emphasize the importance of patient preferences with respect to risk communication media in elective day surgeries. With a majority of risk communication studies pertaining to the ENT specialty, the increase in technology-based modalities in that specialty is hardly surprising. Interestingly, patients in the other specialties appear to prefer written risk communication modalities.
Fig. 5Risk communication methods in relation to surgical specialties.
On review of the included studies, Tait et al. deemed pictographs superior to tables and text for improving patient understanding - a finding supported by the literature [
Communicating risk information: the influence of graphical display format on quantitative information perception-Accuracy, comprehension and preferences.
]. Pictures were found to be useful in both the preoperative and postoperative settings. Care et al. demonstrated that the use of a photobook comparing patients with craniosynostosis preoperatively and postoperatively was rated highly among patients considering surgery as a treatment; they found that it helped patients decide whether to proceed with surgery [
]. This is consistent with several other articles in this review which also suggest that patients appreciate seeing before-and-after photos when considering surgery [
Only one paper in our review tested a verbal modality of risk communication, noting significant anecdotal misconceptions amongst families whose children presented to the ER with suspected appendicitis [
It IS worth the effort: Patient knowledge of reproductive aspects of inflammatory bowel disease improves dramatically after a single group education session.
The included studies that evaluated the internet as a risk communication modality reported that it was remarkably helpful in terms of patient education and understanding [
]. However, in spite of the internet's ability to answer specific questions, it has also inadvertently led to an increase in questions requiring medical professionals' attention [
Interactive web-based format vs conventional brochure material for information transfer to children and parents: a randomized controlled trial regarding preoperative information.
]. This highlights the increasing online information-seeking behavior of patients, while also emphasizing the importance of physicians acknowledging it as a given aid to risk communication and inviting further discussion with patients [
Interactive web-based format vs conventional brochure material for information transfer to children and parents: a randomized controlled trial regarding preoperative information.
]. Real-time messaging features were noted to provide timely information regarding pain management, with a reduction of postoperative negative outcomes noted (i.e. increased visits to ED, improper management) [
]. In keeping with the literature, these publications cited messaging services as an adjunct means for helping families manage their own healthcare, and ultimately reduce their anxiety [
Regarding the benefits of social media platforms, such as Facebook, Twitter and YouTube, several included studies have systematically analyzed and categorized the data found on these respective sources [
Among the 20 publications that tested written risk communication modalities, 7 were focused on the modalities used during the informed consent process. Interestingly, when employing a surgeon checklist to facilitate the transfer of surgical risk information, overall patient’s anxiety levels did not improve [
]. Even when the patients were given a standardized consent form, Woodward et al. maintained that it was only useful if the patients took the time to thoroughly read it through - which was not always the case, since patients either did not recall many risks or did not comprehensively understand all the points on the form [
]. Both Weidler et al. and Chawla et al. evaluated the importance of the patient checklist in the consent form process, and noted that they both achieved the goal to improve confidence in decisions that were not known to exist prior to the utilization of the checklist [
]. However, Tait et al. and Rosenfeld et al. highlighted the importance of creating a clearer modified checklist. In both publications, when respective modifications were made to a checklist, a marked increase in understanding was noted [
As for hybrid forms of risk communication (e.g. including both text and pictures), most of the included studies highlighted an overall increased comprehension of risks [
The position of a written document in preoperative information for pediatric surgery: A randomized controlled trial on parental anxiety, knowledge, and satisfaction.
The position of a written document in preoperative information for pediatric surgery: A randomized controlled trial on parental anxiety, knowledge, and satisfaction.
Previous literature has noted technology to be an ever-evolving mode of risk communication, with some suggesting the use of technology as less effective, whereas others praising the incorporation of technology in consultations [
]. Based on our review, there has been a shift towards utilizing technology-based platforms for risk communication from earlier written/pictorial models. This includes the utilization of websites, social media platforms, slide decks, videos and DVDs, app/games and messaging services. With easily accessible information and support available on technological platforms for patients, this shift is not surprising. Notably however, although the internet was: (a) widely utilized by patients, (b) increased patient comprehension and (c) provided useful information, patients still preferred to ultimately discuss surgical risk information with their respective surgical team/healthcare professional. With technology rapidly advancing within medicine, the possibility of emerging artificial intelligence (AI) replacing medical professionals has been widely debated in the literature - with AI being hailed as the key to increased quality, productivity, and accuracy [
Nguyen TL, Le Nguyen T, Do TTH. Artificial Intelligence in Healthcare: A New Technology Benefit for Both Patients and Doctors. 2019 Portland International Conference on Management of Engineering and Technology (PICMET). 2019. doi:10.23919/picmet.2019.889388487.
]. Based on the findings of this review and existing literature, it is more likely that AI will exist rather as an agent to streamline logistic processes, leaving more time for physicians to participate in crucially needed risk communication [
Although this review highlights the different patient-preferred modalities within the various pediatric surgical subspecialties, it cannot make a generalized claim for the most preferred modality in pediatric surgery. This is in part due to the lack of equal representation from the various subspecialties included in this review, and the different modalities chosen by each patient population within each surgical subspecialty. Indeed, the main limitation of this review lies in the heterogeneity of the included studies, with a high variability in terms of setting, context and intervention dissemination. This made it difficult to perform comparative analyses amongst the articles, leading to a generalization of risk communication categories, reduced quality assessments and difficulty in identifying associations. Another inherent limitation to the scoping review was the limitation placed on languages, with the review solely examining articles written in English or French. This inherently excludes a majority of countries, which may also explain the prevalence of the aforementioned countries (i.e. United States, Canada and United Kingdom) in the included studies. Moreover, not all included articles took note of the demographic characteristics of the patient population, and hence this review cannot conclude that the aforementioned preferences are in accordance with all population groups’ preferences. Finally, another identified limitation was the lack of standardized outcome measures used to evaluate patient preference in relation to risk communication. However, our review was able to address this limitation by defining patient preference as: (a) the solicitation of patient feedback after testing a modality, or (b) the interpretation of suggestions provided by patients.
Our review has also highlighted the domains that require further investigation relative to SDM in the pediatric surgical field. For instance, in accordance with others, our review noted that there is still little experimental evidence whether the graphical representation of information was preferred by patients over numerical representation [
]. Furthermore, our review solely focused on identifying correlations amongst patient-preferred modalities within specific surgical specialties. Further investigation within distinct patient populations must be conducted to confirm the findings of this review.
Conclusion
Eliciting patients’ preferences for risk communication methods is of utmost importance in pediatric surgical care. We have shown that different risk communication media appear best suited for specific surgical domains. Although this review does not validate specific patient-preferred modalities based on demographic characteristics, social determinants, and age, it highlights the need to develop standardized patient-reported outcome measures to clarify patient preference. Ultimately, the review emphasizes the importance of developing personalized up-to-date risk communication tools in pediatric surgery, and learning through them what patients and families expect and prefer in their communication with the healthcare team.
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