Patient Preferences for Shared Decision Making: Not All Decisions Should Be Shared

Abstract

Introduction:

To assess bounds of shared decision making in orthopaedic surgery, we conducted an exploratory study to examine the extent to which patients want to be involved in decision making in the management of a musculoskeletal condition.

Methods:

One hundred fifteen patients at an orthopaedic surgery clinic were asked to rate preferred level of involvement in 25 common theoretical clinical decisions (passive [0], semipassive [1 to 4], equally shared involvement between patient and surgeon [5], semiactive [6 to 9], active [10]).

Results:

Patients preferred semipassive roles in 92% of decisions assessed. Patients wanted to be most involved in scheduling surgical treatments (4.75 ± 2.65) and least involved in determining incision sizes (1.13 ± 1.98). No difference exists in desired decision-making responsibility between patients who had undergone orthopaedic surgery previously and those who had not. Younger and educated patients preferred more decision-making responsibility. Those with Medicare desired more passive roles.

Discussion:

Despite the importance of shared decision making on delivering patient-centered care, our results suggest that patients do not prefer to share all decisions.

Due to advances in surgical treatment options, patients are sometimes confronted with multiple ways to treat an orthopaedic condition without a clear superior option (treatment equipoise). Shared decision making (SDM) is thought to be the preferred method of decision making when patients are faced with treatment equipoise.^1,2 SDM increases patient involvement in decision making and also leads to improved knowledge of the options available, and a feeling of empowerment to be more active in the decision-making process.^3–7 Furthermore, the SDM approach has been shown to be cost effective, which is significant as health care shifts its focus to value.^8–12 Orthopaedic surgeons may benefit from using the SDM approach as payers have begun implementing programs that incentivize the use of SDM.^13,14 Because of its many advantages, SDM is recommended by multiple organizations such as the National Health Service, Centers for Medicare and Medicaid Services, and Agency for Healthcare Research and Quality.

When evaluating the effects of SDM, previous studies have focused on a single diagnostic or treatment decision.^7–15 During an episode of orthopaedic surgery, multiple decisions are made, spanning several phases of care such as diagnosis (eg, obtaining a nerve test), treatment (eg, arthroscopic versus open surgery), and postoperative management (office-based physical therapy versus home-based physical therapy). Despite previous works on SDM for isolated decisions, little investigation has focused on the many decisions that are made during a surgical episode of care for orthopaedic surgery—should all decisions be shared? Using the SDM approach toward decisions that are most important to a patient can result in a more individualized, patient-centered approach. For example, patients may prefer to be involved in some aspects of treatment (eg, wide-awake hand surgery versus with sedation) or whether postoperative rehabilitation is conducted with a therapist.¹⁶ However, a patient might prefer not to be involved with some of the more technical aspects of care such as surgical positioning, incision size, and sutures used for closure. Patient preferences for SDM during the numerous care decisions that are made during a surgical episode of care have not previously been analyzed in a single study. This area warrants exploration because it informs patient-centered care pathways that incorporate SDM (eg, decision aids) during the continuum of care.

We conducted a prospective, exploratory study to evaluate the extent to which patients prefer to be involved in decision making in the diagnosis, treatment, and postoperative management of a musculoskeletal condition. The secondary aims of this study were to investigate (1) preferred involvement in decision making between preoperative, surgical, and postoperative decisions, (2) potential differences in preferences for SDM between preoperative and postoperative patients, and (3) other factors that may be involved in preferred involvement in decision making.

Methods

We performed an Institutional Review Board-approved observational, prospective study of patients who had recently undergone orthopaedic surgery (postoperative) and those who had not (preoperative), who were seeking care at a multispecialty orthopaedic surgery clinic (trauma, tumor, foot and ankle, sports, spine, and hand/upper extremity subspecialties) from July 2017 to January 2018.

Our study was based on a framework by Entwistle and Watt,¹⁷ which described the elicitation of patient preferences to understand the degree to which patients want to control decision making in care. The framework used in this study encourages a broader approach to patient involvement in decision making by acknowledging that patients can be involved in decision making by both directly through their actions and indirectly through their thoughts and feelings. We used this framework in conjunction with the Control Preference Scale (a survey designed to elicit the degree of control a patient desires to assume in his or her care) to create a questionnaire for patients to rate their preferred level of involvement in their care for 25 decisions that were made during the surgical course of an orthopaedic condition.¹⁸ A focus group of orthopaedic surgeons was convened to compile a list of decisions made during the treatment course of common orthopaedic conditions. Each surgeon was asked to consider his or her subspecialty and to complete a mapping exercise of the care pathway relevant for the most common conditions treated. These exercises were aggregated by the focus group, and themes were noted to identify key decision points. These were subsequently merged to create a list of 25 decisions that could apply to all orthopaedic subspecialties (Supplemental Digital Content 1, http://links.lww.com/JAAOS/A410). Decisions included selection of surgical treatment, the date and time of surgery, the type of implant, the discharge location, and the use of postoperative imaging, for example (Supplemental Digital Content 1, http://links.lww.com/JAAOS/A410). The decision to have surgery was not included in our analysis because that requires written consent and therefore inherently necessitates patient involvement. Furthermore, it has been the focus of a previous work on the importance of SDM.¹⁹

Based on previous works using the Control Preference Scale, questions were evaluated with a score of 0 to 10 for each decision, where 0 indicated no patient involvement (fully passive), 1 to 4 indicated a semipassive role, 5 indicated equally shared involvement between patient and surgeon, 6 to 9 indicated a semiactive role, and 10 indicated no surgeon involvement (fully active).^17–20

Consecutive sampling by a research assistant was used to enroll subjects meeting the inclusion criteria until our required sample size was achieved. Inclusion criteria were the following: patients who had not yet undergone an orthopaedic procedure (preoperative patients), patients who had already undergone an orthopaedic procedure (postoperative patients), the ability to provide informed consent, and English fluency or literacy. A total of 127 patients were offered enrollment in the study. One hundred fifteen patients completed the survey and were included in this study (12 trauma, 6 tumor, 29 foot and ankle, 8 sports, 47 spine, and 13 hand/upper extremity). Patients presented with a variety of orthopaedic conditions including ankle fracture and vertebral compression injuries (Supplemental Digital Content 1, http://links.lww.com/JAAOS/A410). Eligible participants were asked to complete the questionnaire at the end of their clinic visit. Information obtained was used only for research purposes, and no identifiable information was collected.

Variables collected in the survey included the following: age, sex, surgery type, whether patients researched their surgery, and socioeconomic elements (race/ethnicity, health insurance, educational attainment, work status, relationship status, and annual salary) (Table 1). The primary response variable was degree of patient involvement for each decision.

Table 1.

Patient Demographics

Demographic	Value
N	115
Age
Mean ± SD	55.59 ± 18.26
Range	18–88
Sex, n (%)
Male	55 (48.2)
Female	59 (51.8)
Preoperative, n (SD)	59 (51.3)
Postoperative, n (SD)	56 (48.7)
Racea, n (%)
White	81 (70.4)
Black	6 (5.2)
Hispanic	9 (7.8)
Asian	16 (13.9)
Native Hawaiian or other Pacific Islander	1 (0.9)
American Indian or Alaska Native	2 (1.7)
Other	2 (1.7)
Education, n (%)
Some high school	7 (6.1)
High school graduate	12 (10.4)
Some college	31 (27.0)
College graduate	26 (22.6)
Masters	23 (20.0)
PhD or professional degree	16 (13.9)
Employment status, n (%)
Working	46 (43.4)
Retired	38 (35.8)
Disabled	11 (10.4)
Unemployed	5 (4.7)
Student	6 (5.7)
Income, n (%)
Less than $50,000	31 (29.0)
From $50,000 to $99,999	16 (15.0)
From $100,000 to $149,999	22 (20.5)
From $150,000 to $199,999	8 (7.5)
From $200,000 to $249,999	10 (9.3)
From $250,000 to $299,999	4 (3.7)
More than $300,000	16 (15.0)
Job title, n (%)
Intern	4 (6.3)
Entry level	6 (9.4)
Analyst/associate	8 (12.7)
Manager	8 (12.7)
Senior manager	11 (17.5)
Director	10 (15.9)
Vice president	2 (3.2)
C-level executive (CIO, CTO, COO, CMO, etc.)	2 (3.2)
President or CEO	1 (1.6)
Owner	11 (17.5)
Marital status, n (%)
Single	21 (18.6)
Married	67 (59.3)
Separated	2 (1.8)
Divorced	13 (11.5)
Widowed	10 (8.8)
Insurance typeb, n (%)
Medicaid	10 (8.8)
Medicare	40 (35.1)
Health insurance from employer/spouse’s	64 (56.1)
employer
Health insurance purchased out of pocket	14 (12.3)
Supplemental insurance that they and/or	11 (9.6)
spouse pays
Health insurance from school	1 (0.9)
No health insurance	0 (0)
Other	3 (2.6)
Research before visit, n (%)
No	41 (36.0)
Yes	73 (64.0)

^aTwo patients selected more than one option.

^bTwenty-seven patients selected more than one option.

Statistical Analysis

This was an exploratory study examining an area previously unstudied in orthopaedic surgery. We chose a sample size based on previous works on SDM and reported summary statistics of the results.^15,21–24

Descriptive statistics were performed for each outcome of interest and shown as the frequency for categorical variables and mean (± SD) for continuous variables. Mean and SD were calculated to yield mean preferred involvement for each of the 25 decisions assessed. Patients were dichotomized into 2 groups indicating those who wished to have no decision-making responsibility (ie, marked 0) for 50% or more of the queried clinical questions and those who wished to have at least some decision-making responsibility (ie, marked a number between 1 and 10) for 50% or more of the queried clinical questions.²⁵ Percentages were calculated for the categorical demographic variables, and means with SDs were calculated for the continuous variable related to each of these dichotomized groups. Chi square and a Student paired t-test were used to analyze each, respectively. All P values < 0.05 were considered statistically significant.

Results

Demographics

Patients had an average age of 55.6 ± 18.3 years, and 51.8% were female individuals. Of the patients, 51.3% were surveyed before receiving surgery (preoperative cohort), whereas 48.7% were surveyed after receiving surgery (postoperative cohort). Most patients (64.0%) had spent time researching their diagnosis before their visit (Table 1).

Preferred Involvement in Overall Decision Making

Patients wanted to be most involved in deciding when the surgical treatment should be scheduled (4.75 ± 2.65), whether they use virtual care after surgery (4.29 ± 2.59), and whether they want to see a physical therapist or be taught by the surgeon to do exercises at home after surgery (3.96 ± 2.43). Patients wanted to be least involved in deciding the size of the incision (1.13 ± 1.98), position during surgery (1.26 ± 2.05), and when the surgical site can get wet after surgery (1.26 ± 2.02) (Table 2). Overall, patients tended to prefer a semipassive role in decision making. In 92% of the decisions assessed, the average patient preferred a semipassive role in the decision-making process. In 8% of the decisions assessed, the average patient wanted to share decisions assessed with his or her surgeon. These decisions were deciding when the surgical treatment should be scheduled and deciding whether to use virtual care after surgery. Sixty-seven percent of patients wanted at least a semipassive role in greater than 50% of the decisions assessed.

Table 2.

Mean Preferred Involvement

Decision	Mean Preferred Involvement ± SD
1. Who should decide which diagnostic workup tools are used? Examples of diagnostic workup tools include laboratory tests and imaging such as radiographs or MRIs.	2.6 ± 2.24
2. Who should decide which nonsurgical therapies are used? Examples include physical therapy, splinting/bracing treatment, medications such as anti-inflammatories, and injections like steroid injections.	3.76 ± 2.26
3. Who should decide which surgical treatment is used?	3.09 ± 2.33
4. Who should make the decision if I need to see my primary care provider or a specialist before surgery to make sure I am safe for surgery?	3.37 ± 2.85
5. Who should decide which laboratory tests are used before surgery?	2.14 ± 2.63
6. Who should decide when my surgical treatment is scheduled? Examples include time of the day and day of the week.	4.75 ± 2.65
7. Who should decide where my surgery takes place?	3.81 ± 2.70
8. Who should decide whether I use a special soap to clean my skin at home before surgery?	1.77 ± 2.46
9. Who should make the decision if I need to have presurgery antibiotics?	1.56 ± 2.15
10. Who should decide how to position me during surgery? Examples of positioning include on your back or on your stomach.	1.26 ± 2.05
11. Who should decide which implants are used? Examples of implants include plates, screws, and replacements.	2.02 ± 2.33
12. Who should decide which sutures are used to close my incision? Examples of sutures include dissolvable and nondissolvable.	1.29 ± 1.90
13. Who should decide the size of my surgical incision?	1.13 ± 1.98
14. Who should decide which anesthesia is used during my surgery? Examples of anesthesia include asleep during surgery, sedation, and local.	2.37 ± 2.36
15. Who should decide which type of immobilization is used after my surgery? Examples of immobilization include casts and braces.	1.83 ± 2.22
16. Who should decide what type of postsurgery pain medication I receive?	3.35 ± 2.39
17. Who should decide how I do my therapy? Examples include seeing a physical therapist or being taught by my surgeon to do my own exercises.	3.97 ± 2.43
18. Who should decide whether I use virtual care after surgery?	4.30 ± 2.59
19. Who should decide when I can get your surgical site wet after surgery?	1.27 ± 2.03
20. Who should decide when the dressing or splint should be removed after my surgery? Examples include 3 d after the surgery or 2 wk after the surgery.	1.29 ± 1.95
21. Who should decide when I can return to normal activities? Examples of activities include sports.	2.37 ± 2.30
22. Who should decide when I can return to work or school?	3.15 ± 2.53
23. Who should decide whether I get radiographs at my follow-up appointments?	1.56 ± 2.14
24. Who should decide when I stop seeing my surgeon for a follow-up appointments?	2.65 ± 2.50
25. Who should decide when my implant can be removed?	1.58 ± 2.25

Questions were evaluated with a score of 0–10 for each decision, where 0 indicated no patient involvement (fully passive role),1–4 indicated a semipassive role, 5 indicated equally shared involvement between patient and surgeon, 6–9 indicated a semiactive role, and 10 indicated no surgeon involvement (fully active role).

Preferred Involvement in Decision Making Between Preoperative, Surgical, and Postoperative Decisions

On average, patients wanted a semipassive role in 89% of preoperative decisions assessed and wanted to share 11% of the decisions. The average patient wanted a semipassive role in all decisions made intraoperatively. And, on average, patients wanted a semipassive role in 91% of postoperative decisions assessed and wanted to share 9% of these decisions (Table 2).

This trend was true for both patients who preferred a passive role in greater than 50% of decisions assessed and those who preferred some decision-making responsibility in greater than 50% of decisions assessed (Table 3).

Table 3.

Mean Preferred Involvement by Decision Type

Factor	Question #	Prefers Passive Role in >50% of Decisions Assessed, Average (SD)	Prefers Some Role in >50% of Decisions Assessed, Average (SD)
Preoperative decisions	1	0.90 (1.55)	0 (0)
	2	1.0 (1.66)	0 (0)
	3	1.09 (1.72)	0 (0)
	4	1.16 (1.72)	0 (0)
	5	1.27 (1.82)	0 (0)
	6	1.34 (1.82)	0 (0)
	7	1.39 (1.81)	0 (0)
	8	1.58 (1.83)	0 (0)
	9	1.77 (1.93)	0 (0)
Intraoperative decisions	10	1.97 (1.97)	0 (0)
	11	2.23 (2.04)	0 (0)
	12	2.51 (2.04)	0 (0)
	13	2.79 (1.84)	0 (0)
	14	3.03 (1.83)	0.37 (1.17)
	15	3.31 (1.85)	0.55 (1.42)
Postoperative decisions	16	3.69 (1.79)	1.08 (1.85)
	17	3.88 (1.71)	1.42 (1.95)
	18	4.10 (1.69)	1.92 (2.15)
	19	4.39 (1.58)	2.39 (2.19)
	20	4.66 (1.58)	2.89 (2.17)
	21	4.92 (1.53)	3.37 (2.06)
	22	5.26 (1.66)	3.87 (2.09)
	23	5.64 (1.74)	4.03 (2.07)
	24	6.22 (1.83)	4.74 (2.19)
	25	7.03 (2.15)	5.76 (2.35)

Preferred Involvement in Decision Making Between Preoperative and Postoperative Patients

Patients were divided into groups based on whether they had undergone an orthopaedic procedure (postoperative patients) or they had not (preoperative patients). No difference (P = 0.5859) exists between those who wanted a semipassive role in greater than 50% of the decisions assessed and those who wanted a passive role in greater than 50% of the decisions assessed (Table 4).

Table 4.

Comparison of Desired Patient Role by Demographic Factors

Factor	Prefers Passive Role in >50% of Decisions Assessed	Prefers Some Role in >50% of Decisions Assessed	P Value
Age ± SD	63.1 ± 19.0	51.9 ± 16.8	0.0015a
Preoperative (%)	39.4	57.1	0.0746
Sex (% women)	48.7	54.5	0.5252
Race (% non-white)	23.7	32.5	0.9426
Employment (% working)	36.8	41.6	0.2358
Married (%)	58.4	57.9	0.9554
Insurance (% Medicaid or Medicare)	63.1	31.1	0.0026a
Education (% college graduate)	39.5	64.9	0.0096a
Income (>$100,000/yr), %	44.4	62.0	0.0843
Job title (% at a manager position or above)	76.0	68.4	0.5147
% Researched diagnosis before the visit	67.6	62.3	0.5859

^aP < 0.05

Other Factors that May be Involved in Preferred Involvement in Decision Making

A greater proportion of younger patients preferred a semipassive role in greater than 50% of the decisions assessed (P = 0.0015). College-educated patients wanted at least a semipassive role in greater than 50% of the decisions assessed (0.0096). Patients who had Medicare insurance wanted a passive role in greater than 50% of the decisions assessed (P = 0.0026).

Discussion

Although the SDM approach is often advantageous, we found that patients undergoing orthopaedic surgery preferred to share decisions with their physicians for only certain decisions. Patients preferred to share decisions such as when to have surgery, the use of virtual care after surgery, and postoperative rehabilitation. Importantly, they did not care to share in all surgical decisions. Although there has been growing enthusiasm for SDM to improve patient-centered care, implementation efforts may be most effective by focusing on the specific decisions patients prefer to share while allowing for surgeon autonomy for those that patients prefer not to share. For example, our results suggest that patients do not want to be involved in deciding what type of suture is used to close the incision and prefer to defer to expert opinion. Therefore, spending time deliberating these decisions with patients and minimizing surgeon autonomy for technical aspects of care are unsupported by our study and are likely of low value.

Although this is an exploratory study examining a largely unstudied area of orthopaedic surgery, the conclusions should be interpreted while considering the limitations of our study design. First, we studied a cohort of patients from one suburban academic surgery center within the United States. Further studies are needed to ensure that demographic, geographic, and cultural (eg, United States versus the United Kingdom) factors do not influence preferences for SDM. Second, the number of previous procedures a patient had undergone before this study and their experience during/after that procedure may have affected their preferred involvement, for which we did not account. It is possible that patients who underwent successful procedures in the past may have less desire for SDM than those who are surgically naive or those who have had negative experiences. Third, our questions asked patients to consider a hypothetical orthopaedic surgery so the same survey could be standardized across subspecialty clinics. We mitigated this shortcoming by only surveying patients with an active orthopaedic conditions who were facing the prospect of having surgery. We justified this strategy using a conceptual framework that suggests that patients experiencing a problem can most accurately answer questions for a condition.²⁶

Our results suggest that patients may prefer a semipassive role in most decisions made during an episode of surgical care (excluding the decision to have surgery). While one may think it is intuitive that patients want to be involved in all aspects of care to tailor their treatment to their needs, they do not necessarily prefer to be involved in technical decisions that require medical knowledge or problem solving, such as those made in the operating room.^16,27,28 For example, patients in our cohort wanted to be least involved in determining incision sizes, even though incision appearance may be an important influence on surgical decisions for patients.²⁸ Patients may, however, want to share in logistical decisions that affect accessibility and their daily lives. For example, in our study, patients wanted to be most involved in deciding when treatment is scheduled, the use of virtual care postoperatively, and whether they have to see a physical therapist or are able to perform exercises at home.

We found no difference in preference for SDM between patients who had previously undergone surgery and those who had not. This is dissimilar to other work, which has found that patient preferences for SDM may be sensitive to condition and change over time as a patient’s experience with his or her illness changes. For example, patients attending their first visit were more likely to pursue greater involvement in the decision-making process compared with patients attending follow-up appointments.²⁹ By contrast, patients who were closer to the time of diagnosis were less likely to prefer an active role.³⁰ Additionally, Butow et al²⁹ found that patients were more likely to want more involvement over time if they were having routine follow-ups versus patients whose visit involved a substantial change in their illness.

We found that older patients preferred less involvement overall during an episode of care. Older patients may prefer a more paternalistic relationship with their physician. This aligns with previous literature as older patients have been shown to prefer a more passive role in the decision-making process compared with younger patients.^{21,28,30–32} Understanding the generational differences in preference for SDM is important in approaching different subgroups of patients. Because race can be an important factor affecting patient outcomes and experiences in surgery, we collected and analyzed patient race as a demographic factor. We found that race was not a significant factor predicting preferred decision-making involvement in our study. This is dissimilar to other studies which found that white patients prefer to be more involved.³³

The evidence supporting SDM in delivering high-quality, patient-centered care continues to grow. The results of our study reiterate this importance and highlights that patients have preferences for which decisions are shared. As health policy continues to emphasize engaging patients in SDM, understanding which decisions are most important to a patient helps prioritize and direct SDM efforts toward specific aspects of care. Future work in SDM within orthopaedic surgery may be most useful and relevant when focused on those decisions that are most important to patients.