World COPD Conference

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COPD Patients' Unmet Needs The Japanese
Experience
First World Conference of COPD Patients Jun 14,
2009 (Rome, Italy) Yuma Hoshino MD, PhD and
Michiaki Mishima MD, PhD Dept. of Respiratory
Medicine, Kyoto University, Japan
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Global Mandate For COPD Care And COPD Patients
Bill Of Rights
1. The right to receive early and accurate
diagnosis 2. The right for information and
education about COPD 3. The right for support and
understanding 4. The right to receive care and
treatment that will benefit them 5. The right to
their fair share of societys involvement and
investment in their welfare and care 6. The
right to advocate with other COPD patients and
supporters for improved COPD care and COPD
prevention 7. The right to safe air and
environment
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95 of COPD patients have been undiagnosed in
Japan
Nippon COPD Epidemiology (NICE) Study A
Nation-wide Survey of COPD in Japan
('00) Airflow Limitation in 10.9 of 2343
subjects (gt 40 y.o.)
diagnosed 0.22 mil.
Disease Prevention, early diagnosis, and early
intervention are required.
Undiagnosed gt 5 mil.
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Raising Awareness of COPD GOLD Japan
Activities on World COPD Day
year Media forum Public event (COPD
screening) 2002 Early intervention of
COPD airflow limitation 2003 COPD - state of
art Tokyo 7.3 (33/452) 2004 COPD -
treatable and preventable disease Tokyo 8.2
(53/643) 2005 Regional effort on COPD
care Tokyo, Kyoto 7.6 (79/1,044) 2006 A
Revised guideline for COPD Kyoto, Fukuoka 9.1
(73/803) 2007 Medical network for COPD
care Sapporo 9.5 (41/433) 2008 Lung age for
management of COPD
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Lung Age for Patient Education

• Easy to understand compared to
  conventional spirometric indexes.
• Facilitate awareness of health status, useful
  for smoking cessation, early detection and
  intervention of COPD.

actual age Lung age
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Japanese White Paper on Home Respiratory Care
Based on surveys on 4,000 medical staff and on
5,000 patients (2004-2005.)
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White Paper Survey on Medical Staff
Issues on LTOT raised by medical staff 1. Need
for reevaluation of LTOT criteria (gt50) pulse
oxymetry on exercise (42), during sleep (40) 2.
Poorly distributed pulse oximeter (16) 3.
Clinical care system not well established
(43) 4. Unsatisfactory LTOT equipment oxygen
concentrator 85, portable oxygen 94
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White Paper Patient Survey
LTOT-receiving patients hoped to improve 1.
Limited activities of daily living Fear of
breathlessness (88) Not confident being alone
(50) Restricted at home (21) 2. Treatment,
education and support Hope for self management
of breathlessness (80) Limited access to
pulmonary rehabilitation (49) and educational
program (55) Expensive pulse oximeter (49) 3.
LTOT service Worry about service in emergency
(57) Poor portability of oxygen device
(62) Demands on reduced electricity cost and
rental of pulse oximeter
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White Paper Patient Survey
LTOT receiving patients hoped to improve 4.
Economic burden Direct medical cost
gt12,000yen/mo. (26) Indirect medical cost
gt10,000yen/mo. (36) 5. Use of physical
disability welfare Receiving the service
(83) Class I (severe, 36), Class III
(moderate, 52) Dissatisfied with the
classification (30) 6. Long-term health
insurance care service Receiving the service
(32) Class I (minimal service,
66) Dissatisfied with the service (32)
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Recent Activities of JRS and Patient organization
1. Improve the education and support for
self-management for respiratory care
patients Guidelines for Respiratory Care and
Rehabilitation. Web announcement of pulmonary
rehabilitation centers. 2. Approaches to
welfare Proposal to the Japanese Health Ministry
on 1) improving the quality of LTOT service, 2)
reduction of medical cost for respiratory
care, 3) classification of respiratory
disability.
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Recent Activities of JRS and Patient organization
3. Creating a system of safe and anxiety-free
home respiratory care Revision of White Paper
(Due in '10) 4. Increase public awareness of
respiratory diseases and patients with
respiratory disabilities Media forum and public
event on World COPD day. Lung Day (Aug 1),
Respiration Day (May 9).
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Conclusions

• The White Paper of Respiratory Care is
  informative to reveal COPD patients' unmet
  needs.
• Based on the White Paper, the JRS has proposed
  national guidelines for respiratory care, and
  worked with Japans health ministry in
  cooperate with patient organizations to
  implement these guidelines.