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Gastroenterologists’ Perceptions and Practice Regarding
Shared Decision-making for Patients with Crohn’s Disease
Maya Nunotani ＊＊Chinatsu Ishibashi ＊＊Mukogawa Women’s University＊＊

Nara Medical University

クローン病患者を診療する消化器専門医の Shared Decision Making の認識と実践
布谷麻耶＊＊

武庫川女子大学

石橋千夏＊＊＊＊

奈良県立医科大学〈Abstract〉
Objectives: This study examined the perceptions and practice of gastroenterologists regarding shared decisionmaking (SDM) in patients treated for Crohn’s disease. It then explored factors that could affect this practice.
Methods: In Japan, from December 2018 to January 2019, we conducted a nationwide online survey ofgastroenterologists who had treated patients with Crohn’s disease. We asked about the recognition, benefits,barriers, methods, and important aspects of SDM-related treatment. We used a chi-square or Fisher’s exact
test, and multiple logistic regression, to analyze factors associated with practicing SDM.
Results: We analyzed data on 93 gastroenterologists, of whom 58% were familiar with SDM and 52% practiced
it. Respondents cited either a lack of time (91%) or tools (51%) as the main barriers to conducting SDM. Actual
practice was related to the surveyed gastroenterologists’ views concerning what aspects were important intreatment decisions. The multiple logistic regression analyses identified that the surveyed gastroenterologists
regarded patients’ preferences or values as the most relevant factor in treatment-related SDM.
Conclusions: Over half of the surveyed gastroenterologists were familiar with SDM, and most used it when
making treatment decisions. Views regarding what was important in treatment decisions affected actual
practice of SDM. Healthcare professionals should examine the time required for SDM and develop usefultools to promote its practice.
〈要旨〉
目的：本研究は，クローン病患者を診療する日本の消化器専門医の shared decision-making（SDM）の認識と実践状況を明らかにし，SDM 実践の関連要因について検討することを目的とした。
方法：クローン病患者の診療経験のある日本在住の消化器専門医を対象に 2018 年 12 月から 2019 年１月にかけて全国規模のオンライン調査を実施した。調査内容は SDM の認知度，SDM とその効果に対する認識，
SDM 実践の障壁，治療法の決め方，治療法の決定に関わる際に重視するものとした。SDM 実践に関連する要因についてＸ２検定または Fisher の正確確率検定，多重ロジスティック回帰分析を用いて分析を行った。
結果：93 名の分析対象者のうち，SDM について「知っている」と回答した者が 58% であり，SDM を実践していた者は 52% であった。SDM 実践の障壁として「時間の不足」（91%）と「ツールの不足」（51%）が挙げられた。SDM の実践は治療法の決定の際に医師が何を重視するかに関連しており，多重ロジスティック回帰
分析の結果，「患者の希望・選好・価値観」を重視するか否かが最大の関連要因として特定された。
結論：クローン病患者を診療する消化器専門医の約半数が SDM を知っており，SDM を用いて治療を決めていた。

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医師が治療の決定に関わる際に重視するものが SDM の実践に関連していた。SDM を促進するには，実践にかかる時間について検討するとともに SDM を具現化するための有用なツールを開発する必要性が示唆された。

Key words
Crohn’s disease
gastroenterologist
shared decision-making

クローン病
消化器専門医シェアードディシジョンメイキング

Ⅰ．Introduction

coupled with the range of available options,

Crohn’s disease (CD) is an intractable

treatment decisions for CD are ideally suited toinflammatory bowel disease (IBD) of unknown

shared decision-making (SDM). SDM is “anetiology. It is thought to result from a complex

approach where clinicians and patients share theinterplay among genetic susceptibility,

best available evidence when faced with the task ofenvironmental factors, and altered gut microbiota

making decisions, and where patients are supported

that leads to dysregulated innate and adaptive

to consider options, to achieve informed

1,2)

immune responses . Most patients develop thepreferences”7). The SDM concept has permeatedcondition at around 20 years old and require

mainstream clinical practice in Europe and North

lifelong medical treatment, going through periods

America, with several decision aids now availableof relapse and remission. The prevalence of CD

to structure its application when deciding on2)

has increased steadily in most regions worldwide ,treatment for patients with IBD8,9). An investigationand in 2016, the number of Japanese patients withof U.S. gastroenterologists found that 80% had a

3)

CD was estimated above 40,000 .
Management of CD typically involves starting

positive view of SDM for patients with CD, yet it
also showed only 12% actually practiced SDM10).

patients on aminosalicylates, steroids, or thiopurine,

In a survey of Japanese patients with IBD, mostwith escalation to other treatments only after these

respondents felt SDM was very important11). A

options fail (i.e., step-up therapy). A novel “treat-to–clear correlation was also found between thetarget” strategy was recently proposed; thisextent to which patients and their doctors agreed

necessitates regular assessment of disease activity

on decision-sharing and overall patient satisfaction

by objective clinical and biological outcome

with treatment12). Despite this, we were unable tomeasures, with treatment adjustments made if

find any research on SDM or the decision methods

needed. The approach facilitates earlier use ofused by gastroenterologists in Japan who treat

immunosuppression or combination therapy withpatients with CD. Factors affecting Japanese

biologics in high-risk patients1,4). Coupled with thesegastroenterologists’ use of each decision-making

changes in management, therapeutic options formethod are also unknown. Charles et al. 13)

CD have expanded; thus, patients and healthcaresuggested four key characteristics of SDM: (1) at

professionals may have difficulty deciding onleast two participants, (2) both parties share

optimal treatments. Such choices could be on

information, (3) both parties take steps to build awhether to use an aggressive top-down approachconsensus about the preferred treatment, and (4)with biologics or use conventional step-up therapy.

agreement is reached on the treatment choice. If a

Both patients’ and healthcare professionals’

doctor does not actively seek to engage in SDM, apreferences affect treatment decisions5,6), and when

patient’s wishes could be treated as irrelevant,布谷・石橋／日本保健医療行動科学会雑誌

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which may reduce the standard of care.

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the practice results at specific institutions. We thenSDM should become increasingly central tocontacted the gastroenterologists by telephonetreatment-related decisions given the growing

using information provided on each facility’s

prevalence of CD in Japan and advances in both

website. Those who showed intent to participate

new medications and treatment approaches. To

were emailed a link/URL for accessing the survey.

add to existing research on patient perceptions,

We collected and analyzed the results upon survey

we therefore sought to investigate SDM-related

completion.

perceptions and practice of gastroenterologists in

２．Questionnaire

treating patients with CD, and to explore thefactors that affect such practice.

The survey questionnaire was created withreference to that developed by Siegel et al.10) andcomprised 17 items among seven modules: (1)Ⅱ．Methods

gastroenterologists’ characteristics, (2) recognition

１．Study design and participantsof the term “shared decision-making,” (3)We conducted a nationwide online survey ofagreement with SDM and its benefits, (4) barriers

gastroenterologists in Japan who had managed

to practicing SDM, (5) treatment decisions deemedpatients with CD. The survey was conducted fromappropriate for SDM, (6) preferred decision-making

December 2018 to January 2019 by the Nippon

approach when treating CD, and (7) what

Research Center, a specialist provider of online

gastroenterologists viewed as important whensurveys, and accessing a panel of registered

they were involved in treatment decisions for CD.

physicians. Using this panel introduced the risk of

３．Statistical analysis

preferentially including respondents from specificDescriptive statistics are shown as a number

medical institutions or who were more active(percentage) for categorical variables such as

among physicians in sharing information. Such

respondents’ characteristics and perceptions ofrisks may lead to biased results regarding

SDM and decision-making methods. We used agastroenterologists’ perceptions and the practice of

chi-square or Fisher’s exact test to analyze theSDM. To mitigate this, we generated a candidate

factors related to practicing SDM. We also used

list of gastroenterologists who met certain

multiple logistic regression analysis (forced entry)

requirements. First, we performed an exhaustive

to explore three independent variables that could

survey of 3,238 large-scale domestic hospitals that,

affect SDM: evidence about treatment risks,

14)

based on published results , provided medical

evidence about treatment benefits, and patient

treatment for CD (≥10 patients hospitalized

preferences or values. All analyses wereannually). We then confirmed whether each facility

performed using IBM SPSS Version 25.0 for

had a practicing gastroenterologist and added these

Windows (IBM Corp., Armonk, NY, USA), with pfacilities and gastroenterologists to our candidate＜0.05 considered statistically significant.

list. We also extracted candidates from a list of

４．Ethical considerations

doctors who treated patients in Japan, as recordedThis study was approved by the ethics

on the Crohn’s and Colitis Foundation of Japan

committee of Mukogawa Women’s University (No.

15)

website . The final list included 247 facilities (223

18–23). The first page of the online survey

hospitals and 24 clinics) comprising 647 candidate

explained the study’s purpose, methods, data

participants (1–13 per facility). We set a maximum

handling (e.g., personal information), and contactof three candidates per facility to avoid bias towarddetails to the participants. Only participants who布谷・石橋／日本保健医療行動科学会雑誌

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read the document and clicked “I agree” could

using SDM could lead to better clinical outcomesthen access the response pages.

(34% strongly agreed and 51% somewhat agreed),and over 90% disagreed that patients were

Ⅲ．Results

unqualified to participate in treatment decisions

１．Gastroenterologists’ characteristics(86% strongly disagreed and 11% somewhat

Of the 95 gastroenterologists who completed thedisagreed). In contrast, fewer respondents (67%)

survey, two were excluded for not answering

disagreed with the statement that SDM was notquestions on recognition of the term “SDM” or on

worth the time it takes (19% strongly disagreed

methods used when making treatment-related

and 48% somewhat disagreed) (Figure 1).

decisions. Consequently, 93 respondents wereLack of time (91%) was the most commonly

included in the final analyses (Table 1).

reported barrier to practicing SDM. All other

２．Perception of SDM

perceived barriers were mentioned, including the

Of the surveyed gastroenterologists, 58% werelack of decision aids or tools to assist with SDM

familiar with the term “SDM” (9% extremely(51%), belief there was insufficient evidence thatfamiliar, 11% familiar, and 38% somewhat familiar),

SDM would improve clinical outcomes (33%), lack

whereas 42% were not familiar (38% not at allof reimbursement (28%), and lack of space in one’s

familiar and 4% not familiar) (Table 2).

office or other practice setting (24%) (Table 2).

The participants had a largely positive

The respondents indicated that SDM wasperception of SDM and its benefits, with more

appropriate in many situations, with most agreeing

than 90% agreeing that SDM leads to increased

it was useful when selecting a course of treatment

patient satisfaction (58% strongly agreed and 36%

that may have significant risks and benefits (94%)

somewhat agreed). Additionally, 85% agreed thatand in deciding on selective surgical procedures

Table 1

Surveyed gastroenterologists’ characteristics

Variables
Gendern
Male83
Female10Age≤ 39 years
15
40–49 years
35
50–59 years
33
60–69 years
9≥ 70 years
1Years’ experience treating patients with Crohn’s disease≤ 9 years
23
10–19 years
32≥ 20 years
38
No. patients with Crohn’s disease seen in an average month≤ 10 patients28
11–25 patients26
26–75 patients25≥ 76 patients
14
Main type of medical facility
Specialist hospital
34
University hospital
17
General hospital
31
Clinics11

N = 93
(%)
(89)
(11)
(16)
(38)
(35)
(10)
(1)
(25)
(34)
(41)
(30)
(28)
(27)
(15)
(37)
(18)
(33)
(12)

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Shared decision-making leads to increased paentsasfacon

Shared decision-making leads to beer clinicaloutcomes

Strongly disagree

Somewhat disagreePaents are not qualified to parcipate intraetment decisions

Somewhat agree

Strongly agree

Shared decision-making is not worth the me it
takes
0

Figure 1

20

40

60

80

100 (%)

Surveyed gastroenterologists’ perceptions of shared decision-making benefits(80%) (Table 2).

patient showed an interest in participating in the

３．SDM practicedecision-making. Meanwhile, 10% reported theAbout half (52%) of the respondents reported

decision was to be made by the gastroenterologist

they decided on actual treatment together withalone or in consultation with other healthcare

their patients irrespective of the patients’professionals. Evidence about treatment benefits

preference toward or interest in decision-making(77%) and reported disease severity (73%) were the(i.e., the SDM group). However, 39% reported theymain factors considered important when making

decided on treatment with a patient only if thetreatment-related decisions. Evidence about

Table 2

Surveyed gastroenterologists’ perceptions of shared decision-making

Variables
Recognition of SDM term
Not at all familiar
Not familiar
Somewhat familiar
Familiar
Extremely familiar
The key barrier to practicing SDM (select all that apply)
Lack of time
Lack of decision aids or tools
Insufficient evidence that SDM will improve clinical outcomes
Lack of reimbursement
Lack of space in their office or practice setting
Insufficient evidence that SDM will increase patient satisfaction
Fear of legal liability
What types of decisions that are appropriate for SDM (select all that apply)
Selecting a course of treatment that may have significant risks and benefits
Deciding on selective surgical procedures
Prescribing treatment for a chronic disease with several relatively low risktreatment options
Making critical, consequential decisions in life threatening circumstances when
there are several options
Routine, low risk medical interventions
Urgent, life-saving intervention

n
35
4
35
11
8

N＝93
(%)
(38)
(4)
(38)
(11)
(9)

85
47
31
26
22
12
5

(91)
(51)
(33)
(28)
(24)
(13)
(5)

87
74

(94)
(80)

45

(48)

43

(46)

27
17

(29)
(18)

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treatment risks (49%), patient preferences or values

tend to make SDM-informed treatment decisions(46%), and patient characteristics and backgrounds(Ｘ2＝6.682, df＝1, p＝0.010; Ｘ2＝9.195, df＝1, p＝(30%) were other important considerations.

0.002), whereas those who regarded patient

４．Factors affecting the practice of SDM

preferences or values as important did tend to

The chi-square test results showed the type of

make SDM-informed treatment decisions (Ｘ2＝

medical facility at which the respondent worked
2

9.322, df＝1, p＝0.002) (Table 3).

(Ｘ ＝8.226, degrees of freedom [df]＝3, p＝0.042)

Finally, Table 4 details the multiple logistic

was the main characteristic associated with SDM

regression results. Whether gastroenterologists

practice. Gastroenterologists working in universities

regarded patient preferences or values asor specialized medical facilities tended to respond

important in treatment-related decision-making

that SDM informed their treatment decisions.

(odds ratio＝3.04; 95% confidence interval＝1.21–

Additionally, those who regarded evidence about

7.64; p＝0.018) was the most strongly predictive

treatment risks or methods as important did notfactor of practicing SDM.

Table 3

Factors associated with methods used for treatment-related decisions
nonSDM
Total
Ｘ2
df
p
SDM
n (%)
48 (52)45 (48)93
Gender0.316
10.412b)Male
42 (51)41 (49)83
Female6 (60)
4 (40)
10
Age
3.046
1
0.081a)<50 years
30 (60)20 (40)50≥ 50 years
18 (42)25 (58)43
Years’ experience treating patients with Crohn’s disease
1.216
10.270a)31 (56)24 (44)55<20 years≥ 20 years
17 (45)21 (55)38
No. patients with Crohn’s disease seen in an average month0.134
10.714a)<25 patients
27 (50)54≥ 26 patients
21 (54)18 (46)39
Main type of medical facility
8.226
30.042a)Specialist hospital
19 (56)15 (44)34
University hospital
13 (77)4 (23)
17
General hospital
13 (42)18 (58)31
Clinics
3 (27)
8 (73)
11
Recognition of SDM
2.768
20.251a)Extremely familiar/ familiar
13 (68)6 (32)
19
Somewhat familiar
16 (46)19 (54)35
Not at all familiar/ not familiar
19 (49)20 (51)
39
What gastroenterologists view as important in treatment decision-making
Evidence about the treatment risks
17 (38)28 (62)456.682
10.010a)Evidence about the treatment benefits
37 (52)34 (48)710.030
10.862a)Severity of disease37 (56)29 (44)661.801
10.180a)Treatment methods
2 (14)
12 (86)149.195
10.002a)Treatment costs
5 (71)
2 (29)
71.190
10.245b)Patient’s characteristics and backgrounds
10 (37)17 (63)27
3.237
10.072a)Patient’s preferences or values
29 (69)13 (31)429.322
10.002a)Data are presented as n (%).
Shared decision-making (SDM) indicates that healthcare professionals decide on treatments with all patients
regardless of the patients’ interest in that process.
a)
Chi-square test; b) Fisher’s exact test

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Table 4

Factors affecting surveyed gastroenterologists’ use of shared decision-making
OR
95% CI
p value*
What gastroenterologists view as important in treatment decision-making (n ＝ 93)
Evidence about the treatment risks
0.45
0.18–1.11
0.084(reference do not view as important)
Evidence about the treatment benefits
1.46
0.52–4.07
0.474(reference do not view as important)Patient’s preferences or values
3.04
1.21–7.64
0.018(reference do not view as important)Abbreviations: OR, odds ratio; CI, confidence interval; SDM, shared decision-making. *Multiple logistic
regression analysis (forced entry) was performed whether or not SDM was used as a dependent variable,
and the above three factors were independent variables.

Ⅳ．Discussion

risks and benefits. Biologics provide an example forThis was the first nationwide survey in Japan

which viable treatment choices (e.g., infliximab,

to detail gastroenterologists’ perceptions andadalimumab, and ustekinumab) exist, and for which

practice regarding SDM. In a U.S. study, 77% of

the expected high efficacy must be weighed against

10)

gastroenterologists were familiar with SDM . In

increased risks of, for example, lymphoma or serious

the current study, 58% were familiar with it andinfection, that endanger the patient’s life. Use of

38% were not at all familiar with it, indicating

biologics for treating CD is increasing in Japan, with

SDM has not fully permeated Japanese clinicalapproximately 50%–60% of patients receiving them21).

practice. The SDM concept was introduced in

Ensuring patient involvement via SDM when

medicine in the 1980s, at which time it drew uponmaking treatment-related decisions should therefore

and deepened the principles of patient-centeredplay an increasingly important role in the future.

16)

care . In North America, SDM is well-established,

Gastroenterologists in the United States perceived

with practical models having been developed andlack of time (74%), lack of reimbursement (70%), andrevised for how to implement it in routine clinicallack of decision aids or tools (51%) as the main

. The study and practice of SDM inbarriers to SDM in clinical practice10). Similarly, weJapan, however, is in its relative infancy, with theshowed gastroenterologists in Japan perceived lack

low recognition in the current study confirmingof time (91%) and lack of decision aids or tools (51%)

this nascent level.

as the main barriers. Of note is the higher

settings

17–19)

In our survey results, most gastroenterologists

percentage of Japanese gastroenterologists’ citing

viewed SDM and its benefits positively, similar tolack of time as an issue. This is also consistent with10)

the results in a U.S.-based survey . In both surveys,

a systematic review that found lack of time was theselecting a course of treatment that may havemost common barrier to healthcare professionals’

significant risks and benefits (94% in our survey,

using SDM22). Another systematic review, on the

87% in a U.S.-based survey10)) was the decisionutility of decision aids, showed they added only aconsidered most appropriate for SDM. Whitney etmedian 2.6 minutes to the length of a typicaldemonstrated a model that placed medical

consultation23). We assert that many of the barriers

decisions along two axes—risk and certainty—with

healthcare professionals perceive might be myths in

SDM being most appropriate in uncertain situations

need of dispelling24). Further research is required toin which there were two or more clinically feasible

evaluate the time needed to practice SDM and toalternatives. Thus, SDM is compatible with selecting

develop validated aids or tools for conducting SDM

a course of treatment that may have substantial

in Japan.

al.

20)

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In our study, just over half (52%) of the surveyed

collected via self-reported questionnaires, which cangastroenterologists reported basing their actual

affect data reliability. Respondents may also havetreatment decisions on SDM. A previous survey

been more likely to have an interest in SDM or

showed only 15% of general physicians at clinics inpatient-centered medicine, which could affect their

25)

Tokyo practiced SDM . Compared with thosepositive views regarding SDM and its benefits.

results, our study may indicate that

Nevertheless, we obtained informative responses

gastroenterologists may practice SDM morefrom a relatively large number of gastroenterologists

actively than other physicians. Gastroenterologists’in Japan, including those from specialized, university,

work settings were also relevant to use of SDM,

and general hospitals. This latter point improves thewith those working in universities or specialized

potential generalizability of our data.

medical facilities tending to report SDM-informed

The concept of SDM has recently expanded

treatment decisions. Those working in general

beyond the physician–patient dyad to include thehospitals or clinics, however, tended to respondinterprofessional healthcare team 26) . Further

that SDM did not inform their treatment decisions.

research is therefore still needed to examine

25)

Kuga et al.

suggested that doctors who examined

perceptions of SDM among other healthcare

patients from a generalist perspective tended toprofessionals involved in the treatment of patients

unilaterally decide on treatment more often thanwith CD, with the aim of promoting an

specialists who examined patients with specificinterprofessional approach to SDM.

diseases. This may account for the difference in use

In conclusion, we examined the perceptions andof SDM between the university or specializedpractices of gastroenterologists in Japan regarding

medical facilities and the general hospitals or clinics.

SDM for patients with CD. Our survey showed

The gastroenterologists in our study regarded

SDM has yet to be fully applied among thisevidence about treatment risks, treatment

physician population, despite most practitioners

methods, and patient preferences or values asviewing it positively and about half using it

important toward treatment-related decisions androutinely. The results also showed that the workstrongly related with the practice of SDM. Thosesetting and the views of gastroenterologists

who placed importance on evidence about

concerning what aspects are important intreatment risks or methods largely tended to nottreatment decisions affected the practice of SDM.

practice SDM. Additionally, they saw clinicallyappropriate treatment decisions as achievableAcknowledgments

without SDM because evidence about treatment

We would like to thank all the gastroenterologists

risks and methods is available in articles andwho responded to our survey. This work was

guidelines. Gastroenterologists who regarded

supported by JSPS KAKENHI Grant Number

patients’ preferences or values as important,

JP18K10372. We also thank Adam Goulston, MS,

however, largely tended to practice SDM. Given

ELS, from Edanz Group (https://en-author-services.

that only the patient can communicate theseedanzgroup.com/ac) for editing the English text ofpreferences or values, this belief may lead toa draft of this manuscript.

better and more active communication withpatients, and thus result in SDM.

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