Difficulties COPD patients face in everyday life

Professor Takayuki Kuriyama
Dept. of Respirology,
Graduate School of Medicine,
Chiba University

(From Respiratory Home Care White Paper by the Japanese Respiratory Society)

Compilation of white paper consolidates COPD patient needs and helps respiratory home care

Respiratory home care is a medical strategy that provides both a means and an environment to enable COPD patients to maintain their quality of life (QOL) outside the hospital (home oxygen therapy and home ventilation therapy).

The number of patients receiving respiratory home care has risen to over 130,000 and is on the rise each year. The year 2005 marks a milestone as it is the 20th year since oxygen therapy home care was added to health insurance coverage in Japan. The Respiratory Home Care White Paper was compiled under the auspices of the Japanese Respiratory Society to help achieve the goals of respiratory home care through discovering the common problems of patients with respiratory disorders and clarifying their needs (Table 1). This white paper includes the results compiled from surveys conducted among both health care professionals and patients. For the survey among health care professionals, we received cooperation from the certified facilities of the Japanese Respiratory Society and from the physicians of certified facilities of the Japan Physicians Association, and for the survey among the patients, we received cooperation from five patient organizations belonging to the Japanese Coalition of Respiratory Disease Patient Associations.

According to the patient survey, 39% of home care patients had COPD as an underlying disease. The survey reveals the difficulties in the daily lives of home care patients due to shortness of breath and limitation of activity, and anxiety and dissatisfaction concerning home oxygen therapy.

The Respiratory Home Care White Paper Committee put together the following items and presented them in the white paper as a consolidated request to meet the needs of the patients: "thoroughness in guidance about a lifestyle during treatment", "approach to public welfare," "creation of a secure and safe respiratory home care system," and "raising awareness about respiratory disease and respiratory disorders in society."

The following themes were brought up as guidelines for respiratory home care based on the white paper: "enhancement of home oxygen therapy and home ventilation therapy in Japan based on the evidence presented in the white paper," "provision of scientific rationale for future priority issues such as introduction of early home oxygen therapy and early home respiratory assistance therapy," and "reaching out to society with collaboration between the Japanese Respiratory Society and the Japanese Coalition of Respiratory Disease Patient Joint Associations to encourage the improvement of the medical environment and welfare."

Some of the medical environmental issues that must be developed include: "user-friendliness and maintenance system for equipment" and "securing and educating manpower." In particular, we would like to actively work on education for the general public with the cooperation of the mass media.

♦The Japanese Respiratory Society (Respiratory Home Care White Paper)♦

First edition/ first printing published June 7th, 2005 Part 1: Survey results from questionnaires to health care professionals Part 2: Survey results from questionnaires to patients Part 3: Summary and proposals by Respiratory Home Care White Paper Committee The Japanese Respiratory Society, Respiratory Home Care White Paper Writing Committee President: Yoshinosuke Fukuchi Juntendo University President, (NPO) the Asian Pacific Society of Respirology Vice presidents: Takeo Kawashiro National Higashi Saitama Hospital Michiaki Mishima Dept. of Respiratory Medicine, Graduate School of Medicine, Kyoto University Commissioners: Hideki Ishihara Osaka Prefectural Medical Center for Respiratory and Allergic Diseases, Dept. of Respiratory Medicine, ICU Jun Ueki School of Health Care and Nursing, Juntendo University (secretariat) Koichiro Tatsumi Department of Respirology, Graduate School of Medicine, Chiba University Keisaku Fujimoto First Dept. of Internal Medicine, Shinshu University School of Medicine Kenji Miyamoto Department of Physical Therapy, College of Medical Technology, Hokkaido University School of Medicine