Original Research
Understanding Shared Decision Making in Pediatric Otolaryngology Jill Chorney, PhD1,2,3, Rebecca Haworth1,2, M. Elise Graham, MD1,2, Krista Ritchie, PhD1, Janet A. Curran, PhD1,4, and Paul Hong, MD1,2
Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.
Abstract Objective. The aim of this study was to describe the level of decisional conflict experienced by parents considering surgery for their children and to determine if decisional conflict and perceptions of shared decision making are related. Study design. Prospective cohort study. Setting. Academic pediatric otolaryngology clinic. Subjects and methods. Sixty-five consecutive parents of children who underwent surgical consultation for elective otolaryngological procedures were prospectively enrolled. Participants completed the Shared Decision Making Questionnaire and the Decisional Conflict Scale. Surgeons completed the Shared Decision Making Questionnaire–Physician version. Results. Eleven participants (16.9%) scored over 25 on the Decisional Conflict Scale, a previously defined clinical cutoff indicating significant decisional conflict. Parent years of education and parent ratings of shared decision making were significantly correlated with decisional conflict (positively and negatively correlated, respectively). A logistic regression indicated that shared decision making but not education predicted the presence of significant decisional conflict. Parent and physician ratings of shared decision making were not related, and there was no correlation between physician ratings of shared decision making and parental decisional conflict. Conclusions. Many parents experienced considerable decisional conflict when making decisions about their child’s surgical treatment. Parents who perceived themselves as being more involved in the decision-making process reported less decisional conflict. Parents and physicians had different perceptions of shared decision making. Future research should develop and assess interventions to increase parents’ involvement in decision making and explore the impact of significant decisional conflict on health outcomes. Keywords shared decision making, decisional conflict, pediatric otolaryngology, informed consent
Otolaryngology– Head and Neck Surgery 1–7 Ó American Academy of Otolaryngology—Head and Neck Surgery Foundation 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0194599815574998 http://otojournal.org
Received November 14, 2014; revised January 19, 2015; accepted February 6, 2015.
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hen considering elective surgeries, patients can often have difficulty deciding on a treatment course when there is more than one reasonable option. This uncertainty, referred to as decisional conflict, is frequently accompanied by emotional distress and can lead to delays in decision making.1,2 Decisional conflict has received relatively little empirical attention in pediatrics despite the inherent challenges in parents making proxy decisions for their children.3,4 The few pediatric studies to date suggest that parents do struggle with health care decisions for their children.5,6 Taking a shared approach to decision making has been shown to reduce decisional conflict.7 Shared decision making is a collaborative approach in which patients and providers work together to make a treatment decision that is based on current medical evidence and considers patient values and decisional needs.8 In pediatrics, previous research suggests that parents may not be as involved in decision making as they would like,9 and there appears to be a difference in how parents and physicians perceive shared decision making.10 Pediatric otolaryngology involves a surgical setting in which elective treatment decisions are common. This study has 3 aims: (1) to describe the extent to which parents considering otolaryngology surgeries for their children experience decisional conflict, (2) to determine if parents’ involvement in shared decision making is associated with lower levels of decisional conflict, and (3) to examine the concordance between parent and physician perceptions of the degree of shared decision making.
1
IWK Health Centre, Halifax, Nova Scotia, Canada Division of Otolaryngology–Head and Neck Surgery, Department of Surgery, Dalhousie University, Halifax, Nova Scotia, Canada 3 Department of Anesthesia, Pain Management and Perioperative Medicine, Dalhousie University, Halifax, Nova Scotia, Canada 4 School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada 2
Corresponding Author: Paul Hong, MD, IWK Health Centre, 5850 University Ave, PO Box 9700, Halifax, NS B3K 6R8, Canada. Email: [email protected]
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Materials and Methods Participants New referrals with chronic/recurrent tonsillitis (considering tonsillectomy), obstructive sleep apnea (considering tonsillectomy and/or adenoidectomy), chronic/recurrent acute otitis media (considering tympanostomy tube insertion), or chronic/recurrent sinusitis/nasal obstruction (considering adenoidectomy) from June to August 2012 were prospectively enrolled from an academic pediatric otolaryngology practice in eastern Canada. All surgical procedures were considered elective. Exclusion criteria for parents included lacking decisionmaking authority or not being fluent in English. If both parents were present, only the mother was included as mothers participated most often, and past research has focused on the experience of the mother.6 Three pediatric otolaryngologists at the same health care center participated.
Procedure IWK Health Centre Research Ethics Board approval was obtained. Parents were informed of the study following a consultation with 1 of 3 pediatric otolaryngologists. After obtaining informed consent, a research assistant administered the study questionnaires in a dedicated research room, and the otolaryngologists completed their questionnaire after the consultation visit.
Measures Demographic Form. This form was used to collect some baseline demographic information and whether previous surgical experience was present in the family. Shared Decision Making Questionnaire–Patient Version (SDM-Q9). This 9-item survey assessed perceptions of parents’ involvement in the decision-making process. Sample items include the following: ‘‘My doctor and I selected a treatment option together’’ and ‘‘My doctor made it clear that a decision had to be made.’’ Each item is rated on a Likert scale from completely disagree to completely agree. The questionnaire yields scores that range from 0 (no shared decision making) to 100 (extremely high level of shared decision making). Development of the scale demonstrated face validity and 1-dimensional structure, as well as high reliability.11 In the present study, the internal consistency or Cronbach’s alpha was 0.86, indicating good scale reliability.12 Shared Decision Making Questionnaire–Physician Version (SDMQ-Doc). This 9-item survey was developed by altering the wording of the SDM-Q-9 such that it is applicable for the physician who was involved in the consultation.13 Sample items include the following: ‘‘I wanted to know exactly from my patient how he/she wants to be involved in making the decision’’ and ‘‘I told my patient that there are different options for treating his/ her medical condition.’’ This scale has previously demonstrated high reliability, and factor analysis confirmed a 1-dimensional structure. In our study, the Cronbach’s alpha for this measure was 0.88, indicating good scale reliability.12
Decisional Conflict Scale (DCS). This 16-item measure assessed parent uncertainty about a decision. Each of the 16 items is rated on a Likert scale of strongly agree to strongly disagree. Sample items include the following: ‘‘I am clear about what benefits matter most to me,’’‘‘I feel sure about what to choose,’’ and ‘‘My decision shows what is important to me.’’ The DCS is designed to be context nonspecific and has been administered to parents considering pediatric surgery (hypospadias repair).5 The scale has shown high test-retest reliability and high content validity, with higher DCS scores for patients who delayed or were unsure of their decision in comparison to those who accepted or rejected treatments.14 Previous research has defined a cutoff point of 25 as indicative of the presence of decisional conflict.2 In the present study, the Cronbach’s alpha for the total DCS score was 0.94, indicating excellent scale reliability.12
Data Analysis All analyses were conducted using SPSS version 17 (SPSS, Inc, an IBM Company, Chicago, Illinois). Aim 1: DCS scores were not normally distributed; therefore, nonparametric tests were used to analyze this scale. Descriptive statistics (median, interquartile range, SE) of the total DCS score are reported. The number of parents who scored above 25 on the DCS (ie, significant decisional conflict) is also reported. Preliminary analyses were conducted to determine if factors other than shared decision making (analyzed in aim 2) contributed to DCS scores. Mann-Whitney U tests were used to examine DCS scores by surgery type (tympanostomy tube insertion/other procedures) and previous surgery for the index child (yes/no) or any child in the family (yes/no), by decision type (pursue surgery/watch and wait). Bivariate Spearman’s r correlations were used to examine the relation of child age and parent education to DCS scores. Aim 2: Two bivariate Spearman’s r correlations were also used to examine the relation between shared decision making and level of decisional conflict. The first correlation was conducted between parent SDM-Q-9 score and DCS score, and the second was conducted between physician SDM-Q-Doc score and DCS score. Finally, a logistic regression was conducted to predict significant decisional conflict (yes/no based on a cutoff of 25 on the DCS) on the basis of parent education and SDM-Q-9 scores. Aim 3: Descriptive statistics (mean, minimum, maximum, 95% confidence interval [CI]) of the SDM-Q-9 and SDM-Q-Doc total scores are reported. A single measure, 2way consistency intraclass correlation (ICC) was used to examine the relation between these 2 measures.
Sample size calculation. A sample size of 52 participants would provide 80% power to detect a correlation coefficient between decisional conflict and shared decision making of 0.38. This correlation coefficient has been found in previous research examining the DCS and shared decision making.15 A sample size of 51 participants would provide 80% power to detect significance for a regression with 2 predictors with an anticipated effect size (r2) of at least 0.2. To account for potential attrition or incomplete survey responses, we recruited 65 participants.
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Table 1. Summary of Participants’ Baseline Information.
Sex Age, mean (SD) [range], y
Conditions, No. Chronic/recurrent acute tonsillitis Obstructive sleep apnea Chronic/recurrent acute otitis media Chronic/recurrent adenoiditis/nasal obstruction Combination of above Previous surgery, No. Index child Other child in family Parent education, mean (SD) [range], y Annual household income Less than $30,000 $31,000-$50,000 $51,000-$80,000 $81,000-$100,000 More than $100,000
Parent
Child
Mothers, n = 59 Fathers, n = 6 Mothers: 33.83 (5.18) [23-42] Fathers: 38.67 (5.13) [33-48]
Girls, n = 25 Boys, n = 40 3.23 (1.77) [1-8]
There were no significant differences in total DCS scores by surgery type, child’s previous surgical experience, previous surgical experience of any child in the family, or the decision to pursue or not to pursue surgery (Table 2). The total DCS scores were not related to child age, rs(65) = 2.062, P = .624, but number of years of parent education was modestly but significantly positively correlated with DCS scores, rs(61) = 0.28, P \ .05, with more educated parents reporting higher decisional conflict (Figure 1).
Aim 2: To Determine if Parents’ Perceived Involvement in Shared Decision Making Is Associated With Lower Levels of Decisional Conflict
1 11 43 4
6 13 25 16.26 (2.94) [10-20]
8 6 17 13 19
Parent SDM-Q-9 and DCS scores were significantly negatively correlated, rs(60) = 2.463, P \ .001. There was no significant correlation between SDM-Q-Doc and the DCS scores, rs(63) = .007, P = .957. Scatterplots of DCS scores by SDM-Q-9 and SDM-Q-Doc scores are shown in Figures 2 and 3, respectively. Given the potential relation of both parent years of education and SDM-Q-9 scores to decisional conflict, a hierarchical logistic regression was conducted to examine the ability of SDM-Q-9 scores and parent years of education to predict the presence or absence of significant decisional conflict (DCS . 25). The model including both predictors accounted for a significant amount of the variance for the presence of decisional conflict, Nagelkerke R2 = 0.22, x2 (2) = 7.9, P \ .01. In terms of individual predictors, parent years of education was nonsignificant (b = 20.05, Wald = 0.13, P . .05), whereas SDM-Q-9 scores significantly negatively contributed to prediction (b = 20.07, Wald = 6.02, P \ .05).
Aim 3: To Examine the Concordance between Parent and Physician Perceptions of the Degree of Shared Decision Making Results Participants Sixty-five consecutive caregivers of children presenting to the pediatric otolaryngology clinic who met the inclusion criteria participated in this study (Table 1). All 65 parents completed the study. Three fellowship-trained pediatric otolaryngologists, who ranged in age from 35 to 45 years, participated. All were male. All were in a salaried academic practice; 2 trained in North America, and 1 trained in Australia.
Aim 1: To Describe the Extent to Which Parents Considering Otolaryngology Surgeries for Their Children Experienced Decisional Conflict The DCS scores were positively skewed (skewness = 3.01, SE = 0.29). The median total DCS score was 6.25 (0-98.4; interquartile range, 0-17.19). Eleven participants (16.9%) rated DCS scores at or above the clinical cutoff of 25, which indicates clinically significant decisional conflict.
Mean SDM-Q-9 score for parents was 77.20 (95% CI, 73.18-81.22; range, 40-100), and mean SDM-Q-Doc score for physicians was 77.09 (95% CI, 73.80-80.39; range, 53.33-100.00). Of note, the range of SDM scores for both parents and surgeons was somewhat restricted, with no scores below 40 (potential range is 0-100). There was no overall difference between mean SDM-Q-9 and SDM-QDoc scores, t(61) = .039, P = .969. Despite similarities in mean scores, there was no significant pairwise relation between physician and parent ratings, ICC = 2.139, P = .861 (Figure 4).
Discussion Many procedures in pediatric otolaryngology are conducted on an elective basis, and current systematic reviews often provide equivocal evidence for surgery over medical management or watchful waiting.16 Such equivocal evidence, coupled with potential risks of surgery and relatively short consultation times, may increase the risk of parents experiencing uncertainty around decision making. In this study, we found that many parents experienced some degree of
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Table 2. Total Decisional Conflict Scale Scores by Decision Type, Surgery Type, and Previous Surgery.
Decision type Pursue surgery (n = 51) Watch and wait (n = 14) Surgery type M&T (n = 43) Other (n = 22) Index child previous surgery Yes (n = 13) No (n = 52) Any child previous surgery Yes (n = 25) No (n = 40)
Median DCS Score
Interquartile Range
Mean Rank
Mann-Whitney U
4.7 11.7
0.0-15.6 1.2-23.5
31.7 37.7
422.5, P . .05
4.7 9.4
0.0-17.2 0.0-18.0
32.8 33.4
482.0, P . .05
1.6 7.0
0.0-10.2 1.6-20.0
25.4 34.9
436.5, P . .05
4.7 7.0
0.0-16.4 1.6-19.9
29.8 35.0
390.5, P . .05
Abbreviations: DCS, decisional conflict scare; M&T, myringotomy and tympanostomy tube insertion; Other, all procedures other than M&T.
Figure 1. Scatterplot of parent education and Decisional Conflict Scale scores with a linear regression line.
conflict. In fact, nearly one-fifth of parents reported a level of decisional conflict that has been described as clinically significant. Given that pediatric otolaryngology procedures are the most commonly performed surgeries, this result suggests that many parents are at risk of experiencing significant stress and uncertainty in decision making.17 Given the probable prevalence, there is a need to better understand the contributors to this potential negative outcome and ways in which it can be reduced. There was no significant difference in parents’ reports of decisional conflict across surgery type, and although our sample size was limited for this comparison, the interquartile ranges of each surgery type overlapped significantly. Thus, despite the fact that tympanostomy tube insertion could be considered a less invasive procedure than tonsillectomy, parents did not experience significantly less decisional conflict when considering the former treatment option. Similarly, parents’ experiences with previous surgeries were not related to
Figure 2. Scatterplot of scores on the Decisional Conflict Scale and the Shared Decision Making Questionnaire with a linear regression line.
decisional conflict, potentially indicating that making prior decisions about surgery did not necessarily translate into lower decisional conflict during subsequent decision making. Taken together, these findings may suggest that regardless of the surgical procedure itself, the act of making a decision about a surgical procedure is stressful for parents. This finding has implications for how surgical procedures are discussed with parents. Although invasive surgeries could be thought to require more discussion and preparation, it appears that parents are likely to benefit from decisional support even in the case of relatively minor surgeries. There was also no significant difference in parents’ reports of decisional conflict between those who decided to proceed with surgery and those who decided to watch and wait. However, the median DCS scores were dissimilar, albeit with a significantly overlapping interquartile ranges, with those not choosing surgery reporting higher DCS scores (Table 2).
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Figure 3. Scatterplot of scores on the Decisional Conflict Scale and the Shared Decision Making Questionnaire–Physician version with a linear regression line.
Figure 4. Histogram of the difference values between physicianrated shared decision making and parent-rated shared decision making. Positive values illustrate instances where the parent-rated shared decision making higher. SDM-Q-9, Shared Decision Making Questionnaire–Patient version; SDM-Q-Doc, Shared Decision Making Questionnaire–Physician version.
This can be intuited, as parents who feel more decisional conflict may tend to not proceed with surgery. Furthermore, parents who choose to have surgery have a more defined treatment course compared with those who choose to watch and wait. This certainty in treatment course may also contribute to lowering decisional conflict. These implications are important, and although not significant in this study, these trends should be further examined in future studies. The current findings also highlight the potential importance of considering parent education. We found a significant, although modest, correlation between years of parent education and higher levels of decisional conflict. The explanation for this finding is unclear but may indicate that
parents with more education are more attuned to the nuances of balancing risks and benefits of surgery. Of note, although education was related as a continuous variable to decisional conflict, it did not predict the presence or absence of significant decisional conflict in parents, and the size of the correlation may indicate that this finding may be statistically but not clinically significant. Further research is needed, but these findings highlight the possibility that parents with higher education may be at more risk of decisional conflict. Shared decision making has been shown to improve informed consent, improve health-related quality of life, and decrease uncertainty about decisions.2,18 This process may also reduce decisional conflict. In the current study, parents’ ratings of shared decision making were relatively high and negatively correlated with decisional conflict. Thus, parents who felt that they were more involved in the decision experienced less decisional conflict. These findings are consistent with research in other areas9,18,19 and are important because they demonstrate a potential benefit of shared decision making. Taken together, existing literature and current findings highlight the potential importance of developing interventions to support parent involvement in decision making. Indeed, research in other areas suggests that tools such as decision aids can substantially decrease decisional conflict.20 Physicians’ perceptions of shared decision making were not correlated with parents’ ratings. There was no overall difference between parent and physician ratings of shared decision making, indicating that physicians did not consistently over- or underrate the level of perceived shared decision making compared with parents. The explanation for this finding is unclear, but it is possible that physicians rated their interactions compared with other similar interactions with patients, whereas parents may have been rating interactions compared with their experiences with other health care providers. There is little research on the implications of a difference in perceived level of shared decision making; however, some relevant research has found that it has a negative impact on parents.10 Furthermore, research examining the effects of physician interaction style found that when the preferred interaction style of the physician and parent does not match, the parent is less satisfied.21 Of particular note in our data, both physicians and parents perceived relatively high levels of shared decision making. This finding is in light of data on the variability in surgeon practice that suggest surgeons may lead treatment decisions. And although physicians are likely guiding these decisions, and appropriately so, parents and physicians still perceived some degree of shared decision making to be taking place. This study provides preliminary information about the prevalence of decisional conflict in parents considering pediatric elective surgery, the relation between shared decision making and decisional conflict, and the potential disparity in perceptions of parental involvement between caregivers and clinicians. Results of this study should be interpreted in light of some limitations. First, the
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generalizability is unclear as this study included only a small number of providers, thus representing a relatively restricted range of potential provider influences. Given this small sample, we were unable to examine intersurgeon variability in agreement with parent ratings of shared decision making or decisional conflict. Presumably, differences in interview style across surgeons could influence patient perception of the decision-making process. Second, although physician and parent ratings of shared decision making were not related, it is impossible to comment on which of these ratings reflect what ‘‘truly’’ happened in practice. Although parents’ (and not surgeons’) ratings were related to decisional conflict, this could be because of shared method variance (ie, similar measures completed by the same person) vs a true difference in the degree to which parents were involved. Third, some demographic factors (eg, ethnicity) not assessed in this study also may have significantly influenced the degree of perceived shared decision making and the level of decisional conflict. Last, although decisional conflict was observed in several participants, we cannot comment on the long-term impacts of this experience. To address some of these issues, future studies in this area should consider incorporating observations of interactions (via audio or video) of a larger number of providers across multiple sites with additional demographic factors. Furthermore, research should examine longer term outcomes of decisional conflict, including knowledge about the procedure and postoperative care, as well as potential decisional regret. As well, future research should also work to identify factors that could improve the decision-making process for parents and clinicians with the potential aim of developing a decision aid to assist in this process. Finally, what truly constitutes shared decision making in pediatrics and the implementation of such a system requires further research.
Conclusion A subset of parents experienced significant decisional conflict and thus were uncertain when making decisions about their child’s health care. This uncertainty can lead to cancelled surgeries, nonadherence to treatment plans, and lengthened consultations while parents vacillate between treatment options.22 Although causation cannot be implied, this study showed that parents who were highly involved in the decisionmaking process experienced lower levels of this conflict. Efforts should therefore be made to increase parent involvement in the decision-making process in an attempt to reduce parent uncertainty. Last, there was a difference in how parents and physicians perceived shared decision making. The implications of this have not yet been examined; however, some related research suggests that this difference may result in undesired outcomes.10,21,23 Therefore, further research to improve the shared decision-making process is required. Acknowledgments We thank all families and otolaryngologists who participated in this study, as well as the research assistants and clinic staff who assisted in data collection.
Author Contributions Jill Chorney, designed study, collected and analyzed data, wrote and revised article; Rebecca Haworth, designed study, collected and analyzed data, wrote and revised article; M. Elise Graham, designed study, collected and analyzed data, wrote and revised article; Krista Ritchie, designed study, collected and analyzed data, revised article; Janet A. Curran, designed study, collected and analyzed data, revised article; Paul Hong, designed study, collected and analyzed data, wrote and revised article.
Disclosures Competing interests: Jill Chorney, Nova Scotia Health Research Foundation REDI grant; Rebecca Haworth, IWK Summer Studentship; Paul Hong, Nova Scotia Health Research Foundation REDI grant. Sponsorships: None. Funding source: NSHRF and IWK Health Centre. No role in study.
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13. Scholl I, Kriston L, Dirmaier J, Buchholz A, Ha¨rter M. Development and psychometric properties of the Shared Decision Making Questionnaire–Physician version (SDM-QDoc). Patient Educ Couns. 2012;88:284-290. 14. Smith MY, Winkel G, Egert J, Diaz-Wionczek M, DuHamel KN. Patient-physician communication in the context of persistent pain: validation of a modified version of the patients’ Perceived Involvement in Care Scale. J Pain Symptom Manage. 2006;32:71-81. 15. Watson D, Clark LA, Tellegen A. Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Soc Psychol. 1988;54:1063-1070. 16. Kasper J, Heeson C, Ko¨pke S, Fulcher G, Geiger F. Patients’ and observers’ perceptions of involvement differ: validation study on inter-relating measures for shared decision making. PLoS One. 2011;(10):e26255. 17. Burton MJ, Glasziou PP. Tonsillectomy or adeno-tonsillectomy versus non-surgical treatment for chronic/recurrent acute tonsillitis. Cochrane Database Syst Rev. 2009;(1):CD001802.
18. Owings MF, Kozak LJ. Ambulatory and inpatient procedures in the United States, 1996. Vital Health Stat. 1998;139:1-119. 19. Hess EP, Knoedler MA, Shah ND, et al. The chest pain choice decision aid: a randomized trial. Circ Cardiovasc Qual Outcomes. 2012;5:251-259. 20. Tait AR, Voepel-Lewis T, Gauger V. Parental recall of anesthesia information: informing the practice of informed consent. Anesth Analg. 2011;112:918-923. 21. O’Connor AM, Wennberg JE, Legare F, et al. Toward the ‘tipping point’: decision aids and informed patient choice. Health Aff (Millwood). 2007;26:716-725. 22. Knops AM, Goossens A, Ubbink DT, Legemate DA, Stalpers LJ, Bossuyt PM. Interpreting patient decisional conflict scores behavior and emotions in decisions about treatment. Med Decis Making. 2013;33:78-84. 23. Krupat E, Rosenkranz SL, Yeager CM, Barnard K, Putnam SM, Inui TS. The practice orientations of physicians and patients: the effect of doctor-patient congruence on satisfaction. Patient Educ Couns. 2000;39:49-59.
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Understanding Shared Decision Making in Pediatric Otolaryngology Jill Chorney, PhD1,2,3, Rebecca Haworth1,2, M. Elise Graham, MD1,2, Krista Ritchie, PhD1, Janet A. Curran, PhD1,4, and Paul Hong, MD1,2
Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.
Abstract Objective. The aim of this study was to describe the level of decisional conflict experienced by parents considering surgery for their children and to determine if decisional conflict and perceptions of shared decision making are related. Study design. Prospective cohort study. Setting. Academic pediatric otolaryngology clinic. Subjects and methods. Sixty-five consecutive parents of children who underwent surgical consultation for elective otolaryngological procedures were prospectively enrolled. Participants completed the Shared Decision Making Questionnaire and the Decisional Conflict Scale. Surgeons completed the Shared Decision Making Questionnaire–Physician version. Results. Eleven participants (16.9%) scored over 25 on the Decisional Conflict Scale, a previously defined clinical cutoff indicating significant decisional conflict. Parent years of education and parent ratings of shared decision making were significantly correlated with decisional conflict (positively and negatively correlated, respectively). A logistic regression indicated that shared decision making but not education predicted the presence of significant decisional conflict. Parent and physician ratings of shared decision making were not related, and there was no correlation between physician ratings of shared decision making and parental decisional conflict. Conclusions. Many parents experienced considerable decisional conflict when making decisions about their child’s surgical treatment. Parents who perceived themselves as being more involved in the decision-making process reported less decisional conflict. Parents and physicians had different perceptions of shared decision making. Future research should develop and assess interventions to increase parents’ involvement in decision making and explore the impact of significant decisional conflict on health outcomes. Keywords shared decision making, decisional conflict, pediatric otolaryngology, informed consent
Otolaryngology– Head and Neck Surgery 1–7 Ó American Academy of Otolaryngology—Head and Neck Surgery Foundation 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0194599815574998 http://otojournal.org
Received November 14, 2014; revised January 19, 2015; accepted February 6, 2015.
W
hen considering elective surgeries, patients can often have difficulty deciding on a treatment course when there is more than one reasonable option. This uncertainty, referred to as decisional conflict, is frequently accompanied by emotional distress and can lead to delays in decision making.1,2 Decisional conflict has received relatively little empirical attention in pediatrics despite the inherent challenges in parents making proxy decisions for their children.3,4 The few pediatric studies to date suggest that parents do struggle with health care decisions for their children.5,6 Taking a shared approach to decision making has been shown to reduce decisional conflict.7 Shared decision making is a collaborative approach in which patients and providers work together to make a treatment decision that is based on current medical evidence and considers patient values and decisional needs.8 In pediatrics, previous research suggests that parents may not be as involved in decision making as they would like,9 and there appears to be a difference in how parents and physicians perceive shared decision making.10 Pediatric otolaryngology involves a surgical setting in which elective treatment decisions are common. This study has 3 aims: (1) to describe the extent to which parents considering otolaryngology surgeries for their children experience decisional conflict, (2) to determine if parents’ involvement in shared decision making is associated with lower levels of decisional conflict, and (3) to examine the concordance between parent and physician perceptions of the degree of shared decision making.
1
IWK Health Centre, Halifax, Nova Scotia, Canada Division of Otolaryngology–Head and Neck Surgery, Department of Surgery, Dalhousie University, Halifax, Nova Scotia, Canada 3 Department of Anesthesia, Pain Management and Perioperative Medicine, Dalhousie University, Halifax, Nova Scotia, Canada 4 School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada 2
Corresponding Author: Paul Hong, MD, IWK Health Centre, 5850 University Ave, PO Box 9700, Halifax, NS B3K 6R8, Canada. Email: [email protected]
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Materials and Methods Participants New referrals with chronic/recurrent tonsillitis (considering tonsillectomy), obstructive sleep apnea (considering tonsillectomy and/or adenoidectomy), chronic/recurrent acute otitis media (considering tympanostomy tube insertion), or chronic/recurrent sinusitis/nasal obstruction (considering adenoidectomy) from June to August 2012 were prospectively enrolled from an academic pediatric otolaryngology practice in eastern Canada. All surgical procedures were considered elective. Exclusion criteria for parents included lacking decisionmaking authority or not being fluent in English. If both parents were present, only the mother was included as mothers participated most often, and past research has focused on the experience of the mother.6 Three pediatric otolaryngologists at the same health care center participated.
Procedure IWK Health Centre Research Ethics Board approval was obtained. Parents were informed of the study following a consultation with 1 of 3 pediatric otolaryngologists. After obtaining informed consent, a research assistant administered the study questionnaires in a dedicated research room, and the otolaryngologists completed their questionnaire after the consultation visit.
Measures Demographic Form. This form was used to collect some baseline demographic information and whether previous surgical experience was present in the family. Shared Decision Making Questionnaire–Patient Version (SDM-Q9). This 9-item survey assessed perceptions of parents’ involvement in the decision-making process. Sample items include the following: ‘‘My doctor and I selected a treatment option together’’ and ‘‘My doctor made it clear that a decision had to be made.’’ Each item is rated on a Likert scale from completely disagree to completely agree. The questionnaire yields scores that range from 0 (no shared decision making) to 100 (extremely high level of shared decision making). Development of the scale demonstrated face validity and 1-dimensional structure, as well as high reliability.11 In the present study, the internal consistency or Cronbach’s alpha was 0.86, indicating good scale reliability.12 Shared Decision Making Questionnaire–Physician Version (SDMQ-Doc). This 9-item survey was developed by altering the wording of the SDM-Q-9 such that it is applicable for the physician who was involved in the consultation.13 Sample items include the following: ‘‘I wanted to know exactly from my patient how he/she wants to be involved in making the decision’’ and ‘‘I told my patient that there are different options for treating his/ her medical condition.’’ This scale has previously demonstrated high reliability, and factor analysis confirmed a 1-dimensional structure. In our study, the Cronbach’s alpha for this measure was 0.88, indicating good scale reliability.12
Decisional Conflict Scale (DCS). This 16-item measure assessed parent uncertainty about a decision. Each of the 16 items is rated on a Likert scale of strongly agree to strongly disagree. Sample items include the following: ‘‘I am clear about what benefits matter most to me,’’‘‘I feel sure about what to choose,’’ and ‘‘My decision shows what is important to me.’’ The DCS is designed to be context nonspecific and has been administered to parents considering pediatric surgery (hypospadias repair).5 The scale has shown high test-retest reliability and high content validity, with higher DCS scores for patients who delayed or were unsure of their decision in comparison to those who accepted or rejected treatments.14 Previous research has defined a cutoff point of 25 as indicative of the presence of decisional conflict.2 In the present study, the Cronbach’s alpha for the total DCS score was 0.94, indicating excellent scale reliability.12
Data Analysis All analyses were conducted using SPSS version 17 (SPSS, Inc, an IBM Company, Chicago, Illinois). Aim 1: DCS scores were not normally distributed; therefore, nonparametric tests were used to analyze this scale. Descriptive statistics (median, interquartile range, SE) of the total DCS score are reported. The number of parents who scored above 25 on the DCS (ie, significant decisional conflict) is also reported. Preliminary analyses were conducted to determine if factors other than shared decision making (analyzed in aim 2) contributed to DCS scores. Mann-Whitney U tests were used to examine DCS scores by surgery type (tympanostomy tube insertion/other procedures) and previous surgery for the index child (yes/no) or any child in the family (yes/no), by decision type (pursue surgery/watch and wait). Bivariate Spearman’s r correlations were used to examine the relation of child age and parent education to DCS scores. Aim 2: Two bivariate Spearman’s r correlations were also used to examine the relation between shared decision making and level of decisional conflict. The first correlation was conducted between parent SDM-Q-9 score and DCS score, and the second was conducted between physician SDM-Q-Doc score and DCS score. Finally, a logistic regression was conducted to predict significant decisional conflict (yes/no based on a cutoff of 25 on the DCS) on the basis of parent education and SDM-Q-9 scores. Aim 3: Descriptive statistics (mean, minimum, maximum, 95% confidence interval [CI]) of the SDM-Q-9 and SDM-Q-Doc total scores are reported. A single measure, 2way consistency intraclass correlation (ICC) was used to examine the relation between these 2 measures.
Sample size calculation. A sample size of 52 participants would provide 80% power to detect a correlation coefficient between decisional conflict and shared decision making of 0.38. This correlation coefficient has been found in previous research examining the DCS and shared decision making.15 A sample size of 51 participants would provide 80% power to detect significance for a regression with 2 predictors with an anticipated effect size (r2) of at least 0.2. To account for potential attrition or incomplete survey responses, we recruited 65 participants.
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Table 1. Summary of Participants’ Baseline Information.
Sex Age, mean (SD) [range], y
Conditions, No. Chronic/recurrent acute tonsillitis Obstructive sleep apnea Chronic/recurrent acute otitis media Chronic/recurrent adenoiditis/nasal obstruction Combination of above Previous surgery, No. Index child Other child in family Parent education, mean (SD) [range], y Annual household income Less than $30,000 $31,000-$50,000 $51,000-$80,000 $81,000-$100,000 More than $100,000
Parent
Child
Mothers, n = 59 Fathers, n = 6 Mothers: 33.83 (5.18) [23-42] Fathers: 38.67 (5.13) [33-48]
Girls, n = 25 Boys, n = 40 3.23 (1.77) [1-8]
There were no significant differences in total DCS scores by surgery type, child’s previous surgical experience, previous surgical experience of any child in the family, or the decision to pursue or not to pursue surgery (Table 2). The total DCS scores were not related to child age, rs(65) = 2.062, P = .624, but number of years of parent education was modestly but significantly positively correlated with DCS scores, rs(61) = 0.28, P \ .05, with more educated parents reporting higher decisional conflict (Figure 1).
Aim 2: To Determine if Parents’ Perceived Involvement in Shared Decision Making Is Associated With Lower Levels of Decisional Conflict
1 11 43 4
6 13 25 16.26 (2.94) [10-20]
8 6 17 13 19
Parent SDM-Q-9 and DCS scores were significantly negatively correlated, rs(60) = 2.463, P \ .001. There was no significant correlation between SDM-Q-Doc and the DCS scores, rs(63) = .007, P = .957. Scatterplots of DCS scores by SDM-Q-9 and SDM-Q-Doc scores are shown in Figures 2 and 3, respectively. Given the potential relation of both parent years of education and SDM-Q-9 scores to decisional conflict, a hierarchical logistic regression was conducted to examine the ability of SDM-Q-9 scores and parent years of education to predict the presence or absence of significant decisional conflict (DCS . 25). The model including both predictors accounted for a significant amount of the variance for the presence of decisional conflict, Nagelkerke R2 = 0.22, x2 (2) = 7.9, P \ .01. In terms of individual predictors, parent years of education was nonsignificant (b = 20.05, Wald = 0.13, P . .05), whereas SDM-Q-9 scores significantly negatively contributed to prediction (b = 20.07, Wald = 6.02, P \ .05).
Aim 3: To Examine the Concordance between Parent and Physician Perceptions of the Degree of Shared Decision Making Results Participants Sixty-five consecutive caregivers of children presenting to the pediatric otolaryngology clinic who met the inclusion criteria participated in this study (Table 1). All 65 parents completed the study. Three fellowship-trained pediatric otolaryngologists, who ranged in age from 35 to 45 years, participated. All were male. All were in a salaried academic practice; 2 trained in North America, and 1 trained in Australia.
Aim 1: To Describe the Extent to Which Parents Considering Otolaryngology Surgeries for Their Children Experienced Decisional Conflict The DCS scores were positively skewed (skewness = 3.01, SE = 0.29). The median total DCS score was 6.25 (0-98.4; interquartile range, 0-17.19). Eleven participants (16.9%) rated DCS scores at or above the clinical cutoff of 25, which indicates clinically significant decisional conflict.
Mean SDM-Q-9 score for parents was 77.20 (95% CI, 73.18-81.22; range, 40-100), and mean SDM-Q-Doc score for physicians was 77.09 (95% CI, 73.80-80.39; range, 53.33-100.00). Of note, the range of SDM scores for both parents and surgeons was somewhat restricted, with no scores below 40 (potential range is 0-100). There was no overall difference between mean SDM-Q-9 and SDM-QDoc scores, t(61) = .039, P = .969. Despite similarities in mean scores, there was no significant pairwise relation between physician and parent ratings, ICC = 2.139, P = .861 (Figure 4).
Discussion Many procedures in pediatric otolaryngology are conducted on an elective basis, and current systematic reviews often provide equivocal evidence for surgery over medical management or watchful waiting.16 Such equivocal evidence, coupled with potential risks of surgery and relatively short consultation times, may increase the risk of parents experiencing uncertainty around decision making. In this study, we found that many parents experienced some degree of
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Table 2. Total Decisional Conflict Scale Scores by Decision Type, Surgery Type, and Previous Surgery.
Decision type Pursue surgery (n = 51) Watch and wait (n = 14) Surgery type M&T (n = 43) Other (n = 22) Index child previous surgery Yes (n = 13) No (n = 52) Any child previous surgery Yes (n = 25) No (n = 40)
Median DCS Score
Interquartile Range
Mean Rank
Mann-Whitney U
4.7 11.7
0.0-15.6 1.2-23.5
31.7 37.7
422.5, P . .05
4.7 9.4
0.0-17.2 0.0-18.0
32.8 33.4
482.0, P . .05
1.6 7.0
0.0-10.2 1.6-20.0
25.4 34.9
436.5, P . .05
4.7 7.0
0.0-16.4 1.6-19.9
29.8 35.0
390.5, P . .05
Abbreviations: DCS, decisional conflict scare; M&T, myringotomy and tympanostomy tube insertion; Other, all procedures other than M&T.
Figure 1. Scatterplot of parent education and Decisional Conflict Scale scores with a linear regression line.
conflict. In fact, nearly one-fifth of parents reported a level of decisional conflict that has been described as clinically significant. Given that pediatric otolaryngology procedures are the most commonly performed surgeries, this result suggests that many parents are at risk of experiencing significant stress and uncertainty in decision making.17 Given the probable prevalence, there is a need to better understand the contributors to this potential negative outcome and ways in which it can be reduced. There was no significant difference in parents’ reports of decisional conflict across surgery type, and although our sample size was limited for this comparison, the interquartile ranges of each surgery type overlapped significantly. Thus, despite the fact that tympanostomy tube insertion could be considered a less invasive procedure than tonsillectomy, parents did not experience significantly less decisional conflict when considering the former treatment option. Similarly, parents’ experiences with previous surgeries were not related to
Figure 2. Scatterplot of scores on the Decisional Conflict Scale and the Shared Decision Making Questionnaire with a linear regression line.
decisional conflict, potentially indicating that making prior decisions about surgery did not necessarily translate into lower decisional conflict during subsequent decision making. Taken together, these findings may suggest that regardless of the surgical procedure itself, the act of making a decision about a surgical procedure is stressful for parents. This finding has implications for how surgical procedures are discussed with parents. Although invasive surgeries could be thought to require more discussion and preparation, it appears that parents are likely to benefit from decisional support even in the case of relatively minor surgeries. There was also no significant difference in parents’ reports of decisional conflict between those who decided to proceed with surgery and those who decided to watch and wait. However, the median DCS scores were dissimilar, albeit with a significantly overlapping interquartile ranges, with those not choosing surgery reporting higher DCS scores (Table 2).
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Figure 3. Scatterplot of scores on the Decisional Conflict Scale and the Shared Decision Making Questionnaire–Physician version with a linear regression line.
Figure 4. Histogram of the difference values between physicianrated shared decision making and parent-rated shared decision making. Positive values illustrate instances where the parent-rated shared decision making higher. SDM-Q-9, Shared Decision Making Questionnaire–Patient version; SDM-Q-Doc, Shared Decision Making Questionnaire–Physician version.
This can be intuited, as parents who feel more decisional conflict may tend to not proceed with surgery. Furthermore, parents who choose to have surgery have a more defined treatment course compared with those who choose to watch and wait. This certainty in treatment course may also contribute to lowering decisional conflict. These implications are important, and although not significant in this study, these trends should be further examined in future studies. The current findings also highlight the potential importance of considering parent education. We found a significant, although modest, correlation between years of parent education and higher levels of decisional conflict. The explanation for this finding is unclear but may indicate that
parents with more education are more attuned to the nuances of balancing risks and benefits of surgery. Of note, although education was related as a continuous variable to decisional conflict, it did not predict the presence or absence of significant decisional conflict in parents, and the size of the correlation may indicate that this finding may be statistically but not clinically significant. Further research is needed, but these findings highlight the possibility that parents with higher education may be at more risk of decisional conflict. Shared decision making has been shown to improve informed consent, improve health-related quality of life, and decrease uncertainty about decisions.2,18 This process may also reduce decisional conflict. In the current study, parents’ ratings of shared decision making were relatively high and negatively correlated with decisional conflict. Thus, parents who felt that they were more involved in the decision experienced less decisional conflict. These findings are consistent with research in other areas9,18,19 and are important because they demonstrate a potential benefit of shared decision making. Taken together, existing literature and current findings highlight the potential importance of developing interventions to support parent involvement in decision making. Indeed, research in other areas suggests that tools such as decision aids can substantially decrease decisional conflict.20 Physicians’ perceptions of shared decision making were not correlated with parents’ ratings. There was no overall difference between parent and physician ratings of shared decision making, indicating that physicians did not consistently over- or underrate the level of perceived shared decision making compared with parents. The explanation for this finding is unclear, but it is possible that physicians rated their interactions compared with other similar interactions with patients, whereas parents may have been rating interactions compared with their experiences with other health care providers. There is little research on the implications of a difference in perceived level of shared decision making; however, some relevant research has found that it has a negative impact on parents.10 Furthermore, research examining the effects of physician interaction style found that when the preferred interaction style of the physician and parent does not match, the parent is less satisfied.21 Of particular note in our data, both physicians and parents perceived relatively high levels of shared decision making. This finding is in light of data on the variability in surgeon practice that suggest surgeons may lead treatment decisions. And although physicians are likely guiding these decisions, and appropriately so, parents and physicians still perceived some degree of shared decision making to be taking place. This study provides preliminary information about the prevalence of decisional conflict in parents considering pediatric elective surgery, the relation between shared decision making and decisional conflict, and the potential disparity in perceptions of parental involvement between caregivers and clinicians. Results of this study should be interpreted in light of some limitations. First, the
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generalizability is unclear as this study included only a small number of providers, thus representing a relatively restricted range of potential provider influences. Given this small sample, we were unable to examine intersurgeon variability in agreement with parent ratings of shared decision making or decisional conflict. Presumably, differences in interview style across surgeons could influence patient perception of the decision-making process. Second, although physician and parent ratings of shared decision making were not related, it is impossible to comment on which of these ratings reflect what ‘‘truly’’ happened in practice. Although parents’ (and not surgeons’) ratings were related to decisional conflict, this could be because of shared method variance (ie, similar measures completed by the same person) vs a true difference in the degree to which parents were involved. Third, some demographic factors (eg, ethnicity) not assessed in this study also may have significantly influenced the degree of perceived shared decision making and the level of decisional conflict. Last, although decisional conflict was observed in several participants, we cannot comment on the long-term impacts of this experience. To address some of these issues, future studies in this area should consider incorporating observations of interactions (via audio or video) of a larger number of providers across multiple sites with additional demographic factors. Furthermore, research should examine longer term outcomes of decisional conflict, including knowledge about the procedure and postoperative care, as well as potential decisional regret. As well, future research should also work to identify factors that could improve the decision-making process for parents and clinicians with the potential aim of developing a decision aid to assist in this process. Finally, what truly constitutes shared decision making in pediatrics and the implementation of such a system requires further research.
Conclusion A subset of parents experienced significant decisional conflict and thus were uncertain when making decisions about their child’s health care. This uncertainty can lead to cancelled surgeries, nonadherence to treatment plans, and lengthened consultations while parents vacillate between treatment options.22 Although causation cannot be implied, this study showed that parents who were highly involved in the decisionmaking process experienced lower levels of this conflict. Efforts should therefore be made to increase parent involvement in the decision-making process in an attempt to reduce parent uncertainty. Last, there was a difference in how parents and physicians perceived shared decision making. The implications of this have not yet been examined; however, some related research suggests that this difference may result in undesired outcomes.10,21,23 Therefore, further research to improve the shared decision-making process is required. Acknowledgments We thank all families and otolaryngologists who participated in this study, as well as the research assistants and clinic staff who assisted in data collection.
Author Contributions Jill Chorney, designed study, collected and analyzed data, wrote and revised article; Rebecca Haworth, designed study, collected and analyzed data, wrote and revised article; M. Elise Graham, designed study, collected and analyzed data, wrote and revised article; Krista Ritchie, designed study, collected and analyzed data, revised article; Janet A. Curran, designed study, collected and analyzed data, revised article; Paul Hong, designed study, collected and analyzed data, wrote and revised article.
Disclosures Competing interests: Jill Chorney, Nova Scotia Health Research Foundation REDI grant; Rebecca Haworth, IWK Summer Studentship; Paul Hong, Nova Scotia Health Research Foundation REDI grant. Sponsorships: None. Funding source: NSHRF and IWK Health Centre. No role in study.
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