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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. Global Mandate For COPD Care And COPD Patients’ Bill Of Rights.

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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

slide2

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 society’s 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

slide3

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 (> 40 y.o.)

diagnosed

0.22 mil.

Disease Prevention,

early diagnosis, and

early intervention

are required.

Undiagnosed

> 5 mil.

slide4

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

slide6

Japanese White Paper on Home Respiratory Care

Based on surveys on 4,000 medical staff and on 5,000 patients (2004-2005.)

slide7

White Paper – Survey on Medical Staff

Issues on LTOT raised by medical staff;

1. Need for reevaluation of LTOT criteria (>50%)

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%

slide8

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 >12,000yen/mo. (26%)

Indirect medical cost >10,000yen/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).

slide12

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 Japan’s health ministry in cooperate with patient organizations to implement these guidelines.