Shinshu Med J, 66⑶：205～212, 2018

Examining the Validity of Efforts of the Muscular Dystrophy
Medical Network in Nagano : A Questionnaire Study
Hitomi Nishizawa1）, Hiroko Takahashi1）, Kaoru Aoki1）
Tomoki Kosho2）3）, Yuji Inaba4）5） and Akinori Nakamura6）7）＊
1） School of Health Sciences, Faculty of Medicine, Shinshu University
2） Center for Medical Genetics, Shinshu University Hospital3） Department of Medical Genetics, Shinshu University School of Medicine
4） Department of Pediatrics, Shinshu University School of Medicine
5） Division of Pediatric Neurology, Nagano Children’s Hospital6） Third Department of Medicine, Shinshu University School of Medicine
7） Department of Neurology, National Hospital Organization, Matsumoto Medical Center

Background : We administered questionnaires to six institutions in Nagano prefecture that make up the Muscu­
lar Dystrophy Medical Network in Nagano. The organization was established in 2011 and aims to improve theeffective treatment of Duchenne muscular dystrophy (DMD). Specifically, we examined the validity of the
network’s activities.
Materials and Methods : Questionnaires were distributed to team members, including 20 physical therapists, 6
occupational therapists, 2 clinical genetic counselors, and 17 doctors. Participants’ responses were returned to an
unrelated person, who was not directly associated with this research. An unrelated person then provided the
responses to the first author of this study.
Results : Significant improvements were seen in all items, such as “the ease of solving patient problems” and“the ease of communication with other occupations and staff at other facilities.”
Conclusion : All team members recognized the activities of the Muscular Dystrophy Medical Network in
Nagano as effective. Specifically, the understanding of information about other institutions, treatment methods,
and evaluation methods was deepened, and the activities of the Muscular Dystrophy Medical Network in
Nagano could contribute to the reduction of disparity in medical treatment for DMD among prefectural facilities.
Shinshu Med J 66 : 205―212, 2018
(Received for publication November 22, 2017 ; accepted in revised form February 6, 2018)
Key words : Duchenne muscular dystrophy, medical network, questionnaire

Ⅰ Introduction

begins with gait disturbance at age 2-5 years. Then,
whole-body muscle atrophy and weakness progress,

Duchenne muscular dystrophy (DMD) is an X chromo­

and patients become unable to walk when they aresome-linked disorder that causes progressive muscle

approximately 13 years old4）. They typically die ofatrophy and weakness. It is the most prevalent he­respiratory or cardiac failure at around age 305）.

reditary muscle disease, with an occurrence rate1）
-3）

of one in every 3,600 male births. The onset of DMD

To date, a radical therapy for DMD has not yet
been established, nor are there standardized assess­ments or therapeutic methods available in physical＊Corresponding author : Akinori Nakamura
Third Department of Medicine, Shinshu University Schoolof Medicine, 3-1-1 Asahi, Matsumoto, Nagano 390-8621,
Japan
E-mail : anakamu@shinshu-u.ac.jp

No. 3, 2018

therapy. However, in addition to the active develop­
ment of treatments, such as gene and regeneration
therapies, insurance adaptation and clinical trials
for corticosteroids use6）-9） are also being considered.
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Nishizawa・Takahashi・Aoki et al.

Moreover, in Japan, the muscular dystrophy patientregistration system, the Registry of Muscular Dystro­phy (REMUDY) (http : //www.remudy.jp/), has been
established10）, and the Muscular Dystrophy Clinical
Trial Network has been created to help facilitate
clinical trials and clinical research. Consequently, since
the medical circumstances surrounding patients with
DMD is changing rapidly, consideration and ingenuity
are required to ensure there are no differences inmedical treatment and physical therapy among com­munities or medical institutions.
In order to overcome these potential complica­
tions, a multidisciplinary medical team comprised ofpediatricians, neurologists, geneticists, and physicaltherapists from six medical institutions, known as
the Muscular Dystrophy Medical Network in Naga­no, was established in May 2011 in Nagano prefec­
ture. This network conducts comprehensive medicalcare and support, including sharing information

Fig. 1 Night splints
This photograph shows a model of night splints
created at each institution. This type is made ofplastic, and is securely fitted to the patient’s lower
leg and ankle joints with straps.

about patients with DMD. To date, there are no oth­er network systems from multiple disciplines andsuch as the North Star Ambulatory Assessment

multiple institutions for muscular dystrophy in Ja­(NSAA) and the Six-Minute Walk Test (6MWT), ispan. This network is considered to be a multi-center

essential to eliminate bias among doctors’ evaluation

multi-occupation collaboration within the same pre­results. Based on the current situation, it is import­

fecture. This approach reduces disparity among fa­

ant to understand the perception of physical thera­

cilities. Furthermore, it is advantageous because itpists regarding the medical treatment of DMD, par­could have access to many patient cases and new

ticularly the change in perception due to subscrip-

findings.

tion to this network. Only the physical therapists

The Muscular Dystrophy Medical Network in Na­

answered other question items.

gano holds a bimonthly conference using the remote

As such, the primary purpose of the network is toconference system of each facility. In these meetings,

judge the timing of corticosteroids introduction andteam members discuss treatment policies for “pa­standardize motor-function evaluation methods, suchtient-in-charge,” share information on evaluation

as how to introduce night splints effectively (Fig. 1)

results, and discuss how to solve problems. Addition­in order to maintain a patient’s gait function. Conse­

ally, conference attendees may obtain a wide range

quently, we evaluated the effectiveness of the Mus­of information other than that which directly in­cular Dystrophy Medical Network in Nagano’s activ­

volves the patient, which can also aid in the reduc­ities, and examined how to best utilize the obtainedtion of medical disparities between facilities. Particu­

information to provide effective muscular dystrophy

larly in the area of physical therapy, there is no

medical treatment and reduce disparity between

standard evaluation or treatment for DMD ; there­

institutions and care workers. Specifically, in thefore, disparity among facilities tends to be substan­questionnaire, we addressed (1) the effectiveness oftial. Furthermore, for international clinical trials andthe Muscular Dystrophy Medical Network in Nagano’s

clinical investigations on DMD, independent assess­activity in deciding treatment and evaluation choicement of physical therapists in motor function tests

for each medical carer, and (2) the effectiveness of

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Vol. 66Duchenne muscular dystrophy treatment effectivenessthe Muscular Dystrophy Medical Network in Nagano’s

3. “Neither ; ” 4. “Relatively agree (relatively true) ; ”

information sharing.

and 5. “I think so (very true).” Questions were an­

ⅡA

Materials and Methods

Participants

swered once before network participation and onceat the time of the survey.
3

The team comprises 20 physical therapists, six oc­

Distribution and collection method and data
analyses method

cupational therapists, two clinical genetic counselors,

Questionnaires were distributed to those on theten pediatricians, three neurologists, two geneticists,

mailing list of the DMD network. Participants who

one pulmonologist, and one orthopedic surgeon. Team

provided consent to participate in the study com­members were affiliated with Shinshu University

pleted the questionnaire and emailed their responses

Hospital, Shinano Handicapped Children’s Hospital,

to an unrelated person, who was not directly associ­the Inariyama Medical Welfare Center, Nagano Chil­ated with the Muscular Dystrophy Medical Network

dren’s Hospital, the National Hospital Organizationin Nagano. The unrelated person printed only the

Matsumoto Medical Center, and the Kakeyu-Misa­

answer sheets and provided them to the first author

yama Rehabilitation Center at Misayama Hospital.

(Fig. 2). Next, the authors analyzed the collected

B

Questionnaire method

answer sheets, which were responded to anony­

1

Questionnaire contents

mously. For data analyses, we used paired t-tests.

There were two questionnaires : one targeted physi­

All analyses were conducted using the PASW Statis­

cal therapists and the other targeted all other health­tics software (version 24.0, SPSS, Inc., Chicago, IL,

care occupations (Table 1). On the questionnaireUSA).

for physical therapists, question items addressed

This study was approved by the institutional eth­

how much they understood evaluation methods, andics committee of the Shinshu University School of

the importance of NSAA and 6MWT. Both NSAA

Medicine, Japan (approval number : 3763).

and 6MWT are necessary for determining the tim­Ⅲ

ing and effectiveness of corticosteroids introduction,
and are required for development and promotion toA

Results

Questionnaire results of all members (Table 2)

clinical trials. Conversely, in preparation of night

Of all members, 71 % responded to the question­

splints, which is related to treatment standardization,

naire. Among all question items, mean scores at thequestion items were prepared that addressed wheth­time of the questionnaire were significantly higher

er physical therapists understood the purpose andthan before participation. The ease of solving patient

importance of creating night splints. Night splints

problems (p＜.001), utilizing information about otherare the most commonly prescribed brace during theoccupations (p＜.001), and the ease of communication

initial stages of DMD that help prevent Achilles

with other occupations and staff at other facilities (ptendon contracture and promote maintenance of gait＜.001) were significant (Table 2).

11）
-14）

ability. The basic policy of this network is to

B

Questionnaire results of physical therapists

prepare night splints, which were developed through(Table 3)

reference of previous studies and international

Among physical therapists, 75 % responded to the

15）
-17）

, for all DMD patients older than age

questionnaire. Among all question items, meanfour. All the questionnaire surveys conducted werescores at the time of the questionnaire were signifi­

in Japanese.

cantly higher than before participation. Specifically,2

understanding the evaluation method and impor­

guidelines

Answering method
All questions were answered using a five-pointtance of NSAA and 6MWT (p＝.001), understanding

Likert scale : 1. “I do not think so at all (absolutely not

the purpose and importance of night splints (p＝.01),

applicable) ; ” 2. “I do not think so (not very much) ; ”

and grasping the contents of doctors’ treatments (pNo. 3, 2018207

Nishizawa・Takahashi・Aoki et al.
Table 1

Questionnaire contents

Questions for all members
Q-1. Is it easy for you to solve the problems of patients with DMD in your work environment?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)
Q-2. Do you use information from other occupations and facilities for medical treatment of DMD patients?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)→ Please describe concretely when you mark ○ in (5), (4) of [At the time of survey]
Q-3. Is it easy for you to communicate with other professions or staff at other facilities?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)
Questions for physical therapists
QP-1. Do you understand the evaluation method and importance of NSAA or the Six-Minute Walk Test?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)
QP-2. Do you know the purpose and importance of making night splints?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)
QP-3. Are you performing physical therapy while referring to the doctor’s treatment?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)→ Please describe concretely when you mark ○ in (5), (4) of [At the time of survey]
Questions for other occupations
QO-1. Do you get confused concerning the treatment policy decisions for DMD patients?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)
QO-2．Do you not get confused in grasping the condition of patients other than the ones you are responsible for?
[At the time of survey][Before participation in this team medicine](5) I think so (very true)(5) I think so (very true)(4) Relatively agree (relatively true)(4) Relatively agree (relatively true)(3) Neither(3) Neither(2) I do not think so (not very much)(2) I do not think so (not very much)(1) I do not think so at all (absolutely not applicable)(1) I do not think so at all (absolutely not applicable)
DMD ; Duchenne muscular dystrophy, NSAA ; North Star Ambulatory Assessment.
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Vol. 66Duchenne muscular dystrophy treatment effectivenessResearch director (Author)
Distribution of questionnaires tomailing list
Participants agreeing toresearch
Answer sheets sent by email to an
unrelated person
An unrelated person
Answer sheets printed and given to
research director
Research director (Author)
Fig 2 Questionnaire distribution and collection procedure
The questionnaires were distributed to participants using the mailing list that the Muscular Dystrophy Medical
Network in Nagano routinely uses. Participants who provided consent responded to the questionnaires andemailed their results to an unrelated person not directly involved in this research. The unrelated person printed
only the answer sheets, which were responded to anonymously, and turned them over to the first author.

Table 2

Questionnaire results of all members. (n＝32)
p-valuea

mean±SD ( /5)
Q-1
Q-2
Q-3
a

Before participation in this team medicine
At the time of survey
Before participation in this team medicine

3.0±0.9
4.0±0.8
2.6±0.9At the time of survey
Before participation in this team medicine

3.8±0.9
2.8±0.9At the time of survey

3.8±0.9＜0.001＊＊＊＜0.001＊＊＊

Wilcoxon signed-rank test ; ＊＊＊ p＜0.001.

Table 3

Questionnaire results of physical therapists. (n＝15)
mean±SD ( /5)

QP-1
QP-2
QP-3
b

＜0.001＊＊＊

Before participation in this team medicine

2.8±0.9At the time of survey
Before participation in this team medicine

3.5±0.92.8±1.2

At the time of survey
Before participation in this team medicine

3.8±1.1
2.9±0.9At the time of survey

3.8±0.7

p-valueb
0.001＊＊
0.01＊＜0.001＊＊＊paired t-test ; ＊p＜0.05 ; ＊＊ p＜0.01 ; ＊＊＊ p＜0.001.

＜.001) were significant (Table 3).
In participants’ free descriptions, which were con­C

Questionnaire results of occupations other thanphysical therapists (Table 4)

crete examples related to problem-solving, someAmong occupations other than physical therapists,

opinions included “grasping the condition by medica­

68 % responded to the questionnaire. Among all ques­tion and introduction of equipment” (23 %), “ventila­

tion items, mean scores at the time of the question­

tor setting” (23 %), and “information sharing withnaire were significantly higher than before partici­

other facilities and departments” (15 %) (Table 5).

pation. Specifically, the ease of deciding a treatment

No. 3, 2018209

Nishizawa・Takahashi・Aoki et al.
Table 4

Questionnaire results of occupations other than physical therapists. (n＝17)mean±SD ( /5)

QO-1
QO-2
b

Before participation in this team medicine

2.6±0.9At the time of survey
Before participation in this team medicine

3.4±0.8
2.8±1.3

At the time of survey

4.0±0.8

p-valueb＜0.001＊＊＊＜0.001＊＊＊paired t-test ; ＊＊＊p＜0.001.
Table 5

Free descriptions of physical therapists and other occupations in the questionnaire

Job category

Contents of free description

Physical therapists

I was able to learn about the patients’ status by their medication and equipment
introduction. (23 %)I was able to learn about the ventilator setting. (23 %)I was able to share and understand the information with other facilities and depart­ments. (15 %)I would like to discuss cases of adult DMD. (15 %)I want to learn more about other diseases. (10 %)Other occupations

I became easier to consult about DMD. (47 %)I was able to learn the status of rehabilitation. (31 %)I was able to learn about daily life and appearance at school for DMD. (13 %)I was able to obtain information on both early and advanced conditions for DMD. (13 %)I would like to focus on the necessary matters of the case. (13 %)I want to learn more about other diseases. (12 %)I would like to discuss cases of adult DMD. (8 %)DMD ; Duchenne muscular dystrophy.

for patients (p＜.001), and the ease of grasping thequestionnaires, it was found that participation in thestatus of other patients (p＜.001) were significant

Muscular Dystrophy Medical Network in Nagano(Table 4).

made it feel easier to solve patients’ problems. By

In participants’ free descriptions, which were con­participating in the activities of the network, partici­

crete examples related to problem-solving, somepants could use information from other occupations

opinions that were expressed included “becoming

to enhance their own level of care. This avenue ofeasier to consult” (47 %), “a policy of rehabilitation”

information-sharing was promoted because partici­(13 %), and “future treatment policies” (13%) (Table 5).

pants felt comfortable communicating with staff

In addition, participants’ free descriptions regardingfrom other occupations and facilities through the use

whether other information about other occupationsof the remote conferencing system. Furthermore,

and facilities was useful included “status of rehabili­

per the free description results of both question­tation” (31 %), “daily life and appearance at school”

naires, problems relating to treatment policies and(13 %), and “information on both early and advanced

understanding the status of patients-in-charge areconditions” (13 %) (Table 5).

being solved. Particularly, physical therapists felt it

Ⅳ Discussion
In this study, questionnaires were used to examine

was easier to grasp medical concepts, whereas
others grasped the implementation contents of phys­
ical therapy.

the effectiveness of the Muscular Dystrophy Medical

Furthermore, there were suggestions for improve­

Network in Nagano, which has been working toments to conference management, such as it being

treat DMD for six years. Based on the results of the

too arduous to use information because participants

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Vol. 66Duchenne muscular dystrophy treatment effectivenessdo not have a patient, how to improve current con­bility that participants positively evaluated what

ferences, and suggestions for new themes. These

they had learned in the 6-year activities of our net­suggestions were related to how to continue thework, and the bias could influence the results, at the

team’s activities more effectively, thus engendering

time of survey ; this is a limitation of this study. Sincea feeling of successful collaboration among all partic­

we need to review the activities in this network, andipating occupations. Meanwhile, physical therapists

to clarify the problem of developing further activities

are required to evaluate independently from doctors

for future network efforts, we conducted the ques­

and others when conducting clinical trials ; hence,tionnaire survey in a way that members looked backraising awareness about the evaluation and treat­to the past around the present moment. In fact, freement for muscular disorders among physical thera­

descriptions, such as “I want to learn more about

pists is important. Therefore, in this questionnaire

other diseases” and “I would like to discuss cases ofsurvey, a specific question on the evaluation andadult DMD,” were included in Table 5. We speculate

treatment was set only for physical therapists, whichthat these opinions should be improved in the future.

helped us analyze the change in perception of theMoreover, this questionnaire survey was conduct­

physical therapists. Moreover, the results showed

ed for a limited number of members, the recovery

that almost all physical therapists were able torate being 75 % and 68 % for physical therapists andunderstand the content and purpose of the evaluation

other occupations, respectively ; therefore, there might

and treatment better than before participation in

be biases that opinions not reflected in the survey

this survey.

and negative opinions were hidden. We need to take

Furthermore, disparity in medical treatment for

into consideration that the opinions of all members

DMD in Nagano prefecture has been reduced be­

were not reflected in the survey results, devise mea­cause of effective utilization of medical treatment in­sures to address the issues written in the free entry

formation between occupations and facilities. In thesection, and further improve the interests of the

future, we will expand the other rare and intractable

members.

diseases that the Muscular Dystrophy Medical Net­

Funding

work in Nagano addresses, and consider new themes
to improve the quality of medical care by continuing
activities and disseminating new findings.

This study was supported by an Intramural Re­
search Grant (26-6) for Neurological and PsychiatricIn this study, we used a questionnaire only at thetime of survey. With this method, there was a possi­

Disorders of the National Center of Neurology andPsychiatry.

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