As providers of pediatric medical care, we routinely involve parents in health care decisions for their children. More involved discussion takes place when the approach to diagnostics or treatment has more than one viable option from which to choose. As common as such collaborative discussions are, we lack standardized approaches and evaluation processes that would help assure communication that is consistent and effective. Currently, the term “shared decision-making” (SDM) has come into common use, and it is now considered the standard decision-making model in medicine.1 Although studies on SDM have appeared in the adult medical literature for a number of years, the topic is currently emerging as a trend in pediatrics. For healthy and sick children, decision-making involves the child's primary caretaker, usually a parent, a fact that makes pediatric SDM unique. Certainly, active clinicians regularly consider the question, “what do the parents (patients) want?” but SDM goes beyond addressing this question by considering engagement of patients in a partnership that not only considers their preferences and values but is based on best available scientific evidence.2 The best ways to involve parents and other caregivers in discussions are not known, standardized tools have not been developed, and an approach to teaching students and residents these techniques does not exist. So, although the general approach of SDM is a time-honored process in pediatrics, there is much room for improvement and innovation in how we approach this practice.
The pediatric literature on SDM is scant but slowly growing. Most trials of approaches and related tools have been conducted in adult health care settings. Even federal policy makers have turned to SDM as a potential way to reduce costs while increasing quality and patient-centeredness for what has been termed, “high cost, preference-sensitive conditions.” There is evidence suggesting that costs can be reduced when SDM is integrated in the treatment approach.3 This study used a team of health care coaches to deliver an intervention that gave participants treatment options and knowledge about their choices in a structured way. The coaches (nurses, dieticians, respiratory therapists, pharmacists) engaged participants in active discussions to help them sort out their treatment options.3 Participants were patients with a variety of preference-sensitive conditions (eg, hip pain, knee pain, back pain) for which there was more than one treatment option. Patients elected less costly/less invasive therapy (ie, nonsurgical) significantly more often than surgical approaches if they were in the SDM group.3 Additionally, formalized SDM approaches in adult settings have been found to improve patient engagement and knowledge as well as enhance the choice of options consistent with personal values.4
Little is known about SDM and associated tools (often called “decision aids”) in child health care settings. References to SDM in pediatrics sharply increased in 2010 but the methods remain poorly defined and trials relevant to children are lacking.5 Pediatric care is unique in ways that directly affect SDM. Parents serve as surrogate decision-makers for their children and pediatricians have legal and ethical obligations to protect children. That protection extends to parental decisions and actions that may place the child at risk. The scenario of a severely ill child with clinical signs of meningitis whose parents refuse permission for a lumbar puncture and/or antibiotics is one example. These instances present a significant challenge to SDM as “choices” are not really present. An additional feature of pediatrics is that as children mature, they give input into decisions that affect their health and well-being and thus become active participants in decision-making with their parents. Lastly, parental decisions may affect not only their individual child but also the health of the public, for which health care providers have some obligation. The most salient example is parental choice of withholding immunizations.
Examples of Shared Decision-Making in Pediatrics
A systematic review and meta-analysis of the existing pediatric literature found a lack of rigorous trials, some suggestion that SDM techniques improve knowledge and decrease decisional conflict, no evidence of improvement in patient satisfaction, and no study of how to engage children in medical decisions.5 SDM has been mostly studied in the management of children and teens with chronic conditions such as inflammatory bowel disease (IBD) or juvenile idiopathic arthritis (JIA). Lipstein et al.6 observed clinic visits for patients with IBD or JIA in which prescription of biologics was discussed. They found limited use of SDM or bi-directional discussion in clinic visits and suggest that this might be in part remedied through the development of clinical discussion tools.6 In contrast, these same researchers found that physicians caring for patients with IBD or JIA do report that they use SDM and perceive few barriers to its use.7 The authors speculate that physicians may not fully understand that SDM includes an exchange of information between the provider and the patient as well as a collaborative decision-making process.7 Formal decision aids or other tools that facilitate collaborative discussion for children and teens with chronic disease appear to have promise as they are acceptable to their users; however, implementation in practice is difficult.8
SDM can be applied to acute child health problems in several common conditions and clinical scenarios. Examples include acute minor head injury (head computed tomography [CT] scan versus observation), otitis media (antibiotics versus none), and acute abdominal pain (abdominal CT or ultrasound versus observation). Kuppermann et al.9 recently published a trial of a decision aids to be used by providers and parents in the discussion of whether or not to obtain a head CT in children with minor head injury presenting to the emergency department. Using the Pediatric Emergency Care Research Network head injury guidelines, Hess et al.10 built a practical decision aid for engaging parents in a collaborative discussion. They found that for families in the decision aid group, parents had greater knowledge, less decisional conflict, and were more involved in the decision-making than those in the usual-care group.10 Interestingly, those in the intervention group endorsed greater trust in their doctors than those in the usual-care group. Rates for obtaining a head CT did not differ between the two groups, but subsequent medical visits related to the head injury were significantly less in the decision aid group.10
Future of Shared Decision-Making
Progress in finding the best SDM practices in pediatrics will require much more study to construct viable and practical approaches and tools. Besides the unique pediatric factors discussed above, there are several questions that remain unanswered. What is the impact on patient flow through an office or department and what is the impact on provider productivity? Does this approach improve patient/parent satisfaction? Is training on use of SDM tools necessary or desirable? One expert has suggested that a specific pediatric conceptual framework be developed that addresses the unique features of child health care discussed above.1 This approach recognizes that there are boundaries to SDM in pediatrics that spring from individual and public health potential harm and that care must be taken to apply SDM techniques when appropriate and to not use it when not appropriate. Answering the question “what do the parents want?” in a way that takes into account their values and preferences and the scientific evidence while fulfilling our duty to protect children will require a thoughtful and complete approach.
- Opel DJ. A push for progress with shared decision making in pediatrics. Pediatrics. 2017;139(2):e20162526. doi:. doi:10.1542/peds.2016-2526 [CrossRef]
- Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean?Soc Sci Med. 1997;44:681–692. doi:10.1016/S0277-9536(96)00221-3 [CrossRef]
- Veroff D, Marr A, Wennberg DE. Enhanced support for shared decision making reduced costs of care for patients with preference-sensitive conditions. Health Affairs. 2013;32(2):285–293. doi:. doi:10.1377/hlthaff.2011.0941 [CrossRef]
- Stacey D, Legare F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;(1):CD001431. doi:10.1002/14651858.CD001431.pub4 [CrossRef].
- Wyatt KD, List B, Brinkman WB, et al. Shared decision making in pediatrics: a systematic review and meta-analysis. Acad Pediatr. 2015;15:573–583. doi:. doi:10.1016/j.acap.2015.03.011 [CrossRef]
- Lipstein EM, Dodds CM, Britto MT. Real life clinic visits do not match the ideals of shared decision making. J Pediatr. 2014;165:178–183. doi:. doi:10.1016/j.jpeds.2014.03.042 [CrossRef]
- Dodds CM, Britto MT, Denson LA, et al. Physicians' perceptions of shared decision making in chronic disease and its barriers and facilitators. J Pediatr. 2016;171:307–309. doi:. doi:10.1016/j.jpeds.2015.12.071 [CrossRef]
- Brinkman WB, Lipstein EA, Taylor J, et al. Design and implementation of a decision aid for juvenile idiopathic arthritis medication choices. Pediatr Rheumatol. 2017;15:48. doi:. doi:10.1186/s12969-017-0177-x [CrossRef]
- Kuppermann N, Holmes JF, Dayan PS, et al. Pediatric Emergency Care Applied Research Network (PECARN). Identification of children at very low risk of clinically-important brain injuries after head trauma: a prospective cohort study. Lancet.2009;374(9696):1160–1170. doi:. doi:10.1016/S0140-6736(09)61558-0 [CrossRef]
- Hess EP, Homme JL, Kharbanda AB, et al. Effect of the head tomography choice decision aid in parents of children with minor head trauma: a cluster randomized trial. JAMA Netw Open. 2018;1(5):e182430. doi:. doi:10.1001/jamanetworkopen.2018.2430 [CrossRef]