[Does the present medical care system satisfy patients with home oxygen therapy (HOT) and home therapy with assisted ventilation (HTAV) in Japan?: an answer from a questionnaire analysis].

The aim of this study was to determine whether the present Japanese medical care system for home oxygen therapy (HOT) and home therapy with assisted ventilation (HTAV) satisfies patients (HOT & HTAV Pts) who receive these therapies. To clarify this issue, we sent questionnaires to 807 patients with HOT and HTAV, 816 practitioners (DRs), and 110 nursing stations (NSs) in metropolitan Tokyo. Responses were eventually received from 79.9% of HOT & HTAV Pts, 32.7% of Drs and 60.9% of NSs. As a result, going to hospitals on regular basis itself (1.3 times a month) forces HOT & HTAV Pts to spend a lot of money and time at present (22.4% spent more than 5,000 yen, and 15.5% more than 60 minutes for a consultation). Although a majority of HOT & HTAV Pts now see a respiratory specialist in larger hospitals, HOT & HTAV Pts wish to see DRs, if the DRs have sufficient ability in HOT and HTAV management. On the other hand, both DRs (86.9%) and NSs (90.6%) consider that case conferences and lectures regarding HOT and HTAV on a regular basis are essential. These meetings are attended by respiratory specialists, DRs, NSs, medical equipment dealers, HOT & HTAV Pts's family members and so forth, because both DRs and NSs feel a certain anxiety about seeing HOT & HTAV Pts (68.3% DRs and 7.5% NSs do not want to see HOT & HTAV Pts). In summary, 1) a majority of HOT & HTAV Pts remain unsatisfied with the present medical care system, 2) a vague anxiety about seeing HOT & HTAV Pts makes DRs tend to avoid HOT & HTAV Pts consultations, 3) NSs frequently feel unsure how to recognize and respond properly to problems concerning HOT & HTAV Pts (62.3%). We therefore conclude that if we could succeed in organizing a better medical care system for HOT & HTAV Pts than the present one, we could turn substantially improve the quality of life of HOT & HTAV Pts in Japan.