DOI:http://dx.doi.org/10.7314/APJCP.2014.15.21.9165
Palliative Care Program in Mesothelioma

RESEARCH ARTICLE
Caring for Patients with Malignant Pleural Mesothelioma inJapan: Evaluation of a Palliative Care Educational Program
Yasuko Nagamatsu1*, Yukiko Nakayama2, Helen Clayson3, Yuji Natori4, Misato
Ohata5, Shino Matsuura-Moriguchi6, Sarah E. Porter7
Abstract
Purpose: This study evaluated the effect of an Educational Program on Palliative Care for MPM for Nurses inJapan. Program: The 5-h program consisted of lectures and care planning group work. Materials and Methods:
This study used a pretest–posttest design with a single cohort of nurses and included a Difficulties in Palliative
Care for Patients with MPM (DPCMPM) Scale with 15 items. The pre- and posttest scores were compared using
a t-test. Results: We included 27 female nurses with a mean of 14.4 years of nursing experience. In 12 of 15
DPCMPM items, the posttest difficulty scores were lower than the pretest scores. Participants highly evaluatedthe program for validity, clarity, clinical usefulness, and the facilitators. The Palliative Care for MPM Handbook
for Nurses was developed as an educational tool for clinical settings. Conclusions: The Educational Program on
Palliative Care for MPM for Nurses was effective in reducing nursing difficulties.
Keywords: malignant pleural mesothelioma - palliative care - education - asbestos - quality of life
Asian Pac J Cancer Prev, 15 (21), 9165-9170

Introduction
Malignant mesothelioma is a rare malignancy that
affects the pleura, peritoneum and pericardium (Neumann
et al., 2013). It is estimated that 80%-85% of mesothelioma
is caused by direct asbestos exposure. Asbestos has beenused extensively in such areas as construction, plumbing
and working with insulation (van Zandwijk et al., 2013).
With a long latency period from exposure to diagnoses ofabout 15-50 years, the World Health Organization (WHO)estimated that around 107, 000 people die each year fromasbestos-related diseases resulting from occupational
exposure (WHO, 2014). Median survival after diagnosisof mesothelioma is 4-14 months (Musk et al., 2011; Utkan
et al., 2013).
Malignant Pleural Mesothelioma (MPM), the mostcommon type of mesothelioma, is almost always fatal (Yipet al, 2011; van Zandwijk et al., 2013) because there isno curative treatment. Radical resection of mesothelioma
combined with chemotherapy or radiotherapy improves
the survival and extent time to recurrence (Tilleman etal., 2009; Bolukbas et al., 2013). Standard chemotherapy
using combination of cisplatin and pemetrexed orcarboplatin (van Zandwijk et al., 2013) also prolong
survival, although, benefit of further lines of chemotherapy
has not been substantiated (Ceresoli et al., 2011; Mutlu,
et al., 2013).

Progressed MPM causes debilitating physicalsymptoms such as pain, dyspnea, and cough (Berk etal., 2012; Chihan et al., 2014) weight loss (Berk et al.,2012), fatigue and sweating (Neumann et al., 2013).
The management of symptoms of MPM is complicatedbecause symptoms of this aggressive form of cancer are
related directly to the accumulation of fluid in the pleura
and indirectly related to pain and the debilitation ofcancer and often appear simultaneously (Neumann et al.,2013). Ibrahim (2013) suggested introducing opioids inthe early stages to improve the quality of life of people
with mesothelioma.
Moore et al. (2010) have emphasized that understanding
the specific needs of people with MPM is essential to
improving care. Similar to other patients with cancer,
patients with MPM experience emotional difficulties suchas the shock of diagnosis (Lee et al., 2009), anxiety anddepression (Dooley, 2010; van Zandwijk et al., 2010). In
addition, patients with MPM experienced anger toward
their employers who did not alert them to the hazard ofasbestos (Lee et al., 2009), ambivalence about working inan unhealthy environment versus loyalty to company thatgave them longtime employment (Lee et al., 2009), and thestress of dealing with lawsuits (Hughes and Arber, 2008).
National Comprehensive Cancer Network (2012)
recommended palliative care and symptom control as
central to any management plan for mesothelioma patients.

St. Luke’s International University, College of Nursing, 2Koshikawa Hospital, 4Hirano-Kameido-Himawari-Clinic, 5St. Luke’s
International Hospital, 6Department of Nursing, Faculty of Human Sciences, Sophia University, Tokyo, Japan, 3Centre for the Social
History of Health and Healthcare, Glasgow Caledonian University and University of Strathclyde, Glasgow, The United Kingdom,
7
Oregon Health & Science University, School of Nursing, Portland, The United States of America *For correspondence: sarahnagamatsu@slcn.ac.jp
1

Asian Pacific Journal of Cancer Prevention, Vol 15, 20149165

Yasuko Nagamatsu et al

For successful symptom management, it is advisable tointroduce palliative care in the early stage of this incurable
disease (Ibrahim et al., 2013) by a multidisciplinary
care team (Lehto, 2014) including appropriately trained
specialist nurses in the care pathway for the patient andthe family throughout the course of the illness and whoare able to provide a strong liaison between hospital
services and primary care and can enable access to
specialist palliative care services as required.(National
Comprehensive Cancer Network, 2012).
In Eastern Asia, mesothelioma incidence was low
due to under diagnosis and recent industralization (Leeet al., 2009; Bianchi and Bianchi, 2012). The cases ofmesothelioma are expected to increase in the near future.
(Bianchi and Bianchi, 2012). Japan, a country famous for
its large number of earthquakes and fires, is one of theworld’s highest importers and users of asbestos (Furuya etal., 2013). The government has cautiously moved forward
in developing standards of asbestos control (Furuya et al.,2013). In 1995, the first year statistics documenting MPM
mortality became available in Japan, there were 500 deaths
and by 2012 the number had jumped to 1,400, a 180%
increase (Furuya et al., 2013; Japan Ministry of Health,2013). Although the National Comprehensive Cancer
Network offers the translated MPM guidelines in Japanese(National Comprehensive Cancer Network, 2012), themedical professional struggles to manage the complex
needs of people with MPM. Research demonstrated thatJapanese patients with MPM suffered from pain anddyspnea due to undertreated symptoms (Nagamatsu et al.,2012). Since educational resources are limited, Japanesenurses have relied on care that has been effective forother forms of cancer but unfortunately that strategy has
failed to manage symptoms of MPM (Nagamatsu et al.,2012). Therefore, patients with MPM are disadvantagedby the lack of effective treatment, high symptom burden,
traumatic and distressing medical interventions, and rather
complicated procedures to claim their asbestos-related
benefits. In summary, applying routine lung cancer care topatients with MPM in Japan has often failed (Nagamatsu
et al., 2012).
There have been many reports on the importance ofpalliative care for MPM because of the high mortality rate
and burden owing to symptoms (Scherpereel et al., 2010)
Given that the typical survival is only around two years(Cihan et al., 2014) there is an even more urgent needto manage symptoms of MPM and to improve patients’quality of life (QOL). Clearly nurses need to acquire
new knowledge and skills for symptom management forpatients suffering with MPM.
In response to these needs, our team, including apalliative care physician from the United Kingdom andfrom Japan, a respiratory physician and an oncology
specialist nurse, developed a palliative care educational
program and handbook for nurses in Japan focused on
patients with MPM. Previous research documented
the effectiveness of a two-day program in decreasing
nurses’ difficulty managing care for patients with MPM(Nagamatsu et al., 2014). The question was, would thisfive-hour program also be effective in decreasing nurses’
sense of difficulty in providing palliative care for patients

9166 Asian Pacific Journal of Cancer Prevention, Vol 15, 2014

with MPM? This study aimed to evaluate the effect of boththe Educational Program on Palliative Care for Patientswith MPM and the Palliative Care for MPM Handbook
for Nurses in Japan.

Materials and Methods
This classic one-group pretest-posttest design included
a questionnaire as the pretest before the educational
program intervention and the same questionnaire as theimmediate posttest with a purposive sample of 27 nurses.
The study was conducted on November 25, 2012.
Program
The five-hour program, in a workshop format,
consisted of lectures and group work. One of the authorsof this study, specialized in palliative care for MPM,
provided the main lectures: Palliative Care and Hospicein the UK and Multi-dimensional Symptom Managementin MPM, which included medication management.
Japanese oncology nurses presented a lecture on Symptom
Management in Japan. Participants then formed fivesmall groups, each supported by a facilitator. The goal of
the groups was to develop care plans to manage difficult
cases using the material they had learnt from the lectures.
Program handbook
The handbook was printed using A4 size paper andcontained the following: (1) symptoms of MPM; (2)the cause of pain and dyspnea in MPM; (3) the multidimensional management of symptoms of MPM; (4) the
management of dyspnea (medications, indwelling pleuraldrain, hand-held fan, psychological support); (5) typesof pain (inflammatory pain, neuropathic pain, bone pain,
breakthrough pain) and (6) pain management methods(medications and cordotomy). We also described the pain
reported after extraplural pneumonectomy, which is the
typical surgery for MPM in Japan, but this is no longer
the standard practice in the UK.
Sample and recruitment
Nurses with approximately two years or more ofclinical experience were recruited as participants.
Advertisement letters were sent nationwide to the heads
or nursing directors of health care facilities (including
hospitals with respiratory wards or palliative care wards,
cancer hospitals, home visiting nurse stations and healthcare centers). Recruitment was also conducted throughthe Mesothelioma Nursing Japan website established by
the researchers.
Evaluation tools
Difficulties in Palliative Care for Patients with
MPM (DPCMPM) Scale: We used the Difficulties in
Palliative Care for Patients with MPM (DPCMPM) Scale
before and after the educational intervention. This is a
novel 15-item self-report inventory developed for thisstudy by palliative care nurses, pulmonologists and athoracic surgeon based on the difficulties of nurses who
experienced caring for patient with MPM (Nagamatsu
et al., 2012). The DPCMPM consists of four subscalesabout care of patients with MPM: Symptom management
and maintenance of QOL (four items), Spiritual care (fiveitems), Care of family (two items) and Care coordinationof medical services (four items). Five expert nurses who
had experience in caring for more than 50 patients with
MPM established the content validity of the DPCMPM
scale and modifications were made as necessary.
Participants responded to items in a 5-point Likert scale(very difficult=5; difficult=4; neutral=3; not difficult=2;
not at all difficult=1). A total possible score ranged from10 to 50 and was summed to indicate overall difficulty.
A higher score reflected more difficulty. Pre-workshop
DPCMPM scores indicated participants’ difficulties basedon their actual experience with patients and post-workshop
score represented the participants’ anticipation of difficultyin the care of people with MPM.
Participants’ satisfaction form: Participants provided
feedback for the program by responding to the following
four items: 1) satisfaction with the overall program; 2) the
content was easy to understand; 3) the content was helpful
in solving your clinical problems and 4) the facilitator was
supportive. The program was evaluated according to theitems using a 5-point Likert scale (5=very much agree to
1=never agree). Higher scores indicated more positive
feedback for the program.
Comment form: This program was the first educational
program about palliative care in MPM therefore, it was
important to capture as much feedback as possible.
Participants were encouraged to provide written comments
about their experience of the program in an open-ended
format.
Data analysis
Descriptive data analyses were conducted to identify
characteristic demographics. The pre and post educational
program mean score for each item, total subscale score andtotal DPCMPM scores were examined using the paired
t-test for the items and the Wilcoxon signed-rank test
for the subscale scores based on score distribution. Data

DOI:http://dx.doi.org/10.7314/APJCP.2014.15.21.9165
Palliative Care Program in Mesothelioma

were analyzed using the Statistical Package for the Social
Science (SPSS version 19). A difference was consideredsignificant when the corresponding P-value was 0.05 orless. The comments from participants were qualitatively
analyzed by content analysis.
Ethical considerations
The Research Ethics Review Board of St. Luke’s
College of Nursing (approval no. 12-043) approved thisstudy. The study was conducted based on the ethicalprinciples of avoiding harm, voluntary participation,
anonymity and protection of privacy and personal
information. Participants were informed that this program
included research activity. The purpose, procedure andconfidentiality of the study were explained verbally atthe outset of the course and were also provided in written
format. Participants were informed that nonparticipation
would not disadvantage them. Data were collected fromthose who wished to participate and who completed theinformed consent form.

Results
Participants
Attending the Palliative Care for MPM program were
27 female nurses (response rate 100%). Although the mean
number of years of work experience was 14.4 (range of
1.9-40) and the majority (70%) worked in a respiratory
ward most (70%) had little or no experience of caring
for patients with MPM. Whereas the inclusion criteria
indicated two years of work experience, one nurse had
one year and nine months plus experience with patientswith MPM, therefore, she was included in the sample.
Evaluation of the program on palliative care for MPM
An item-by-item analysis indicated that 13 of the 15
DPCMPM item scores at post-workshop were significantly
lower (p>0.001) than the pre-workshop scores (Table 1).
The scores of all four subcategories also decreased after

Table 1. Difficulty Scores for Pre-and Post-Workshops
Items

Pre-workshop
Mean SD

Post-workshop
Mean SD

P-Value

0.86
1.04
0.84
0.82
1.04
0.86
1.12
1.25
0.94
0.92
0.98
20.3
0.98
1.09
0.99
1.04

3.37
1.25
3.33
1.11
3.11
1.05
2.78
0.95
2.85
0.99
3.48
1.01
3.44
1
3.07
1.17
3.33
0.88
3.15
1.03
3.37
0.93
3.3
0.95
2.41
0.97
25.0 0.97
2.63
2.67
1.21

<0.0010.007<0.001<0.001<0.001
0.133
0.408
0.026
<0.001<0.001<0.001<0.001<0.0010.020<0.001

3.07
54.2
1.46
4.17
3.33
10.55

13
3.82
6
1.95
31.3
16.1
4.15
11
3.52
46.04 11.64<0.0010.001<0.001<0.001<0.00138.0 Prevention, Vol 15, 2014
Asian Pacific 31.3
Journal of Cancer
31.3

9167

Symptom management Control pain and dyspnea
4.15
and maintenance of
Ensure symptom management
3.93
quality of life
Manage symptoms by patient request
4.37
Maintain the QOL of a patient
3.85
Care of family
Draw out the feelings of a family
3.67
Minimize misunderstandings between the patient and his/her family
3.78
Spiritual care
Draw out the honest feelings of a patient
3.63
Respond to patients who say “I do not want to die”
3.63
Diminish patient’s psychological, social, and spiritual pain
4.04
100.0
Ease pain of a victim of asbestos exposure
4Ease pain of a patient who cannot find effective treatment 6.3
4.26
10.1
Care coordination
Support a patient where he/she wants to die
4.04
of medical services
Work with other departments to ensure that the patient’s wish is fulfilled
3.22
75.0
Work in a team with same goal
3.15
Foster understanding in a physician who thinks negatively
3.63
regarding palliative care
46.8
56.3
Subscale scores
Symptom management and maintenance of quality of life
16.3
Care of family
7.5
50.0
Spiritual care
19.6
Care coordination of medical services
14
Total		56.78
*Items analyzed using Wilcoxon signed-rank test; ** Subscale scores and Total analyzed
25.0 using paired t-test

23.7

1
30.0

5
30.0

30.0

e

n

t

t

0
ce

Subscales		

3

Yasuko Nagamatsu et al

program.

Participants’ satisfaction
All participants rated the program either very high or
high in satisfaction regarding: the overall program; easy
to understand content; helpful in solving clinical problems
and supportiveness of facilitator (data not presented).
Comment from participants
The written comments from participants provided amore poignant picture of the nurses’ dilemmas. There
were requests to provide a detailed regimen for symptom
management in MPM and for educational equipmentthat could be used in a clinical setting and that could beshared with health care staff at their workplace (italics
indicate raw data).
“Tell us what exactly medicine we should give to
our MPM patient in hideous pain. I need to show myphysicians because they are not sure what they shouldprescribe.” (Nurse 2).
“I could not find any handbooks about palliative carefor MPM. I need more copies [of the handbook] to sharewith my colleagues.” (Nurse 14).
“I learnt the theory today. However, it is useful if wehave an actual handbook. It is good for me and easier forjunior nurses.” (Nurse 20).
“The handbook in A4 size is too big to carry in theward. I want to have a smaller one.” (Nurse 15).

Figure 1. Cover of the Handbook

The physician (Clayton) from the UK impressed
participants with her communication skills. Participantscommented that they were eager to learn how to use thesecommunication skills in a terminal care setting.
“Communication with MPM patient is tough. I was
impressed by the way the English physician communicatedwith her patient. If I were a patient, I want to be talked toin the same way she did.” (Nurse 5).
“I want to learn more about how to communicate witha dying patient.”(Nurse 3).
There were positive comments regarding care planninggroup work. This provided implications and indicationsof what nurses should do and how nurses could provide
support and empathy to their colleagues who experienced
difficulty in caring for patients with MPM.
“The case study helped me understand how totranslate theory into a real situation.” (Nurse 3).
“It was difficult to make a care plan during the group
discussion. We found we needed to ask many questions to
the patients and family. And it was what we need to do in
the clinical situation.” (Nurse 15) .
“I thought myself as useless because I failed to thecontrol symptoms of a patient. Empathy and understandingby other nurses and instructors encouraged me a lot. Now
I think that was all I could do. Support from other nurses
is so helpful.” (Nurse 23) .
Development of the palliative care for MPM handbook
As indicated by participants’ comments, there were9168 Asian Pacific Journal of Cancer Prevention, Vol 15, 2014

Figure 2. Analgesia in Mesothelioma
requests for educational equipment that could be used in
the clinical setting. To meet these needs, we modified theprogram handbook based on the participants’ comments
and our observations. We integrated this information
into a smaller size (B5 size: 176 mm×250 mm) handbook(Figure 1) with colorful pictures, a symptom management
model, analgesia in mesothelioma, (Figure 2) usefulreferences and communication skills. The handbooks
were distributed to medical facilities that provided careto patients with MPM. The content of the handbook isavailable on the Mesothelioma Nursing Japan website.

Discussion
Effectiveness of the educational program on palliative
care for MPM for nurses
In this study, the DPCMPM scores at pre and post-workshop were compared. Since the post-workshop
DPCMPM scores were significantly lower than the
pre-workshop scores, it is possible that the workshop
contributed to easing anticipated difficulties of nurses
providing palliative care for MPM. The learning strategy
contributed to this success.
First, we selected learning through conventional
lectures rather than e-learning; the latter is learner-centeredand offers flexibility for time and location and costeffectiveness while being potentially available to a global
audience with unlimited access to knowledge. Conversely,
learning through conventional lectures has the advantage
of allowing for immediate feedback, being familiar toboth the instructor and student, motivating students andcultivating a social community (Avillion, 2009). We
selected the conventional style because this program was
the very first to provide knowledge about palliative carefor MPM to nurses in Japan and our priority was to obtain
immediate feedback. In addition, conventional lectures
provide greater opportunity to communicate directly withnurses from different workplaces and provide mutual
support. We believe that this approach helped to decreasedifficulties experienced by nurses.
Second, the program maximized learning outcomesusing multiple learning methods. Avillion (2009) stressedthat innovative teaching strategies are needed to meet theneeds of nurses with different learning styles, thereby
contributing the best possible learning outcomes. The
presentation on the palliative care system in the UK
motivated participants, while lectures on palliative careprovided the required knowledge. Group work conducted
after these lectures involved care planning for difficult
cases then provided an opportunity to practice criticalthinking and to apply the newly acquired theory to actual
situations (Avillion, 2009). Inviting participants to provide
details of difficult cases raised enthusiasm and provided
a real-life context.
Communication skill needs
The scores for two DPCMPM items did not decreasesignificantly in the post-workshop results, as follows:“to draw out honest feelings of a quiet patient” and“to adjust the gap of willingness between patient andfamily.” Requests from participants indicated that they
wished to improve their communication skills further
when managing patients with MPM. Mitsuhashi andToda (2011) reported that quiet terminally ill patientswere often in extreme spiritual pain; MPM patients withsuch pain kept away from health care staff and family
members (Nagamatsu et al., 2012). The care of patientswith spiritual pain is difficult and causes suffering
among nurses (Lehto, 2014). Nagamatsu et al. (2012)
reported that nurses experienced strong distress whenattempting to communicate with patients with MPM
who could not accept their disease and prognosis. In
addition, improving the relationship between patientswith MPM and their family requires sensitivity in fully
understanding the multiple causal factors together with theability to empathize and use appropriate communication
skills to facilitate reconciliation (Lehto, 2014). In
conducting programs in the future, an additional module

DOI:http://dx.doi.org/10.7314/APJCP.2014.15.21.9165
Palliative Care Program in Mesothelioma

on communicating with patients in spiritual suffering andmanaging nurses’ compassion fatigue (Lombardo andEyre, 2011) should be considered.
Implications
Patients struggling with MPM have complex physicalproblems compounded by emotional and spiritual pain.
Nurses and other medical professionals caring for patientswith MPM and other complex lung cancer symptoms could
greatly benefit from the MPM program and handbook.
Limitation
The sample size in this study was small and included
many participants without the experience of caring forpatients with MPM. For progression of the program, it
is recommended to use larger samples collected froma variety of workplaces and for different durations. In
addition, the lack of a control group was an obvious
limitation; however as this was the first attempt to provide
the program, it was not considered feasible to establish
both intervention and control groups. The immediate
evaluation of participants after the workshop reduced theinternal threats of history and maturation. With the postworkshop evaluation period right after the program thelong-term effect of the program, particularly after applying
knowledge and skills to the clinical setting, should be
evaluated. The DPCMPM questionnaire only asks forparticipants’ perceptions. Ideally, the next step should
include observations in the clinical setting to evaluate
attitude and behavior changes after the program.
Finally, this program was developed based on
difficulties experienced by nurses who care for patientswith MPM in Japan, which may limit its use in countries
with different cultures and care systems. However, theprogram can serve as an example for those countries thatdesire to make culturally relevant modifications.
In conclusion, the five-hour Palliative Care for Patientswith MPM educational program was effective in reducing
perceptions of difficulties experienced by nurses caring forpatients with MPM. Based on the feedback and requests
from participants, we also revised and disseminated the
Palliative Care for MPM Handbook for Nurses.

Acknowledgements
Sasakawa Memorial Health Foundation supported
this study. The authors would like to thank Ms. Masako
Akiyama, Representative Director of Hakujuji Home-Visit
Nursing Station for her support and guidance.

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6.3

56.3

31.3

Newly diagnosed without treatment

Yasuko Nagamatsu et al