Introduction
Appendicitis is one of the most commonly encountered pediatric surgical diagnoses,1–7 with over 30% of children presenting with perforation.4 8 Successful non-operative management of pediatric perforated appendicitis typically leads to two treatment options: an interval appendectomy (IA) or expectant management, where the appendix is only removed if symptoms of appendicitis recur. Both options carry relatively low risks, and neither has been proven superior.9–11 In cases where there are multiple viable treatments, decision-making can be difficult, especially among pediatric patients. Decision-making regarding elective IA is often left to the discretion of children’s caregivers’ preferences in North America, as both management approaches have similar rates of low complications.12
Parents facing the decision of whether or not to have their child undergo elective IA may face decisional conflict. For example, at our institution there are many instances where parents express decisional conflict regarding this elective procedure. Decisional conflict is defined as when an individual experiences uncertainty regarding a particular course of action where the options involve high stakes.13 Decisional conflict can increase when decision-makers feel uninformed and experience a lack of clarity regarding their own personal values, experience social pressure regarding a particular course of action, and feel minimal confidence regarding their own decision-making ability.14 As a result, parents may experience emotional distress that can lead to indecisiveness, delayed decision-making, and decisional regret.15 16
Shared decision-making (SDM) may facilitate value-based informed decision-making, thereby potentially reducing decisional conflict.17 SDM is a collaborative model of healthcare decision-making in which children, their parents, and their healthcare provider work together to reach a mutual decision about tests, treatments, or care plans.18 SDM is particularly important in cases of ‘preference-sensitive’ decisions, where more than one reasonable option exists and there is a difference between how individuals weigh the risks and benefits of each option in terms of their personal values and preferences.19 Additionally, there is growing evidence that parents and their children prefer to be involved in treatment decision-making.19–21
SDM interventions can help to facilitate this process. Among these, patient decision aids (PDAs) are evidence-based tools that can help to prepare for SDM typically among parents facing difficult decisions and their healthcare providers. The use of PDAs has been shown to improve knowledge of the available options, allowing parents to feel more informed and clear about what matters most to them and giving them more accurate expectations of possible benefits and harms.22 Recent PDA developers have engaged multiple patient and healthcare provider stakeholders in the design, development, and testing of PDAs as recommended by shared decision-making experts.23 24 PDAs have been developed for a variety of adult and pediatric medical and surgical conditions. However, there are very few PDAs for pediatric surgery, despite the fact that a number of common pediatric surgical conditions exist where optimal management is not always clear.
Based on our experience, parents considering elective IA would benefit from SDM. For example, we recently attempted to carry out a randomized controlled trial to compare IA and conservative management. However, recruitment was very low, indicating that parents are not comfortable with the treatment decision being made for their child (randomization) and prefer to be involved in the decision-making process. Also, many parents still delay the decision or make comments that indicate decisional conflict, such as mentioning things like “I am worried that if we do nothing, the appendicitis will come back, but I am scared of my child having surgery”. For these reasons, we believe an SDM intervention, such as a PDA, is needed for parents, with consideration of parental decision-making needs.
Thus, the primary objectives of this study were to assess the decision-making needs of parents considering elective IA for their child and to determine the need for a patient decision aid. The secondary objective was to determine parent preferences regarding the format and distribution plan of a drafted PDA.
If there is a need for a PDA, it could be the first decision aid developed as part of the Canadian Association of Paediatric Surgeons (CAPS) Decision Aids Project. Our research team collaborates with CAPS to produce the CAPS Evidence-Based Resource (CAPS EBR),25 which provides summaries of the best available evidence on a variety of pediatric surgical topics. The corresponding author’s team produces these summaries by reviewing the scientific literature (ie, systematic reviews), which is an essential step in the development of a PDA. Furthermore, when the results of the systematic reviews for the CAPS EBR reveal clinical equipoise for a condition where it is appropriate for children and their families to be involved in SDM, a needs assessment for a PDA will follow.
This study took place at the Children’s Hospital of Eastern Ontario (CHEO), a tertiary care hospital located in Ottawa, the capital city of Canada. Healthcare is covered under the Canada Health Care Act (eg, hospital stays that are medically necessary).