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Quality of Life and Needs for Support in Japanese Patients With Pulmonary Hypertension

N Sato

N Takemura

N Murakami

Hiruyoki Fukushima

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Conference: 2018 PHA International PH Conference & Scientific Sessions

Release Date: 06.28.2018

Presentation Type: Abstracts

File Download: Conference 2018_1049

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2018 International PH Conference and Scientific SeAbstract presented at the 2018 International PH Conference and Scientific Sessions in Orlando, Fla., June 28-July 1, 2018.

Background

Treatment of pulmonary hypertension (PH) has developed and prognosis of patients with PH has improved. In addition, the quality of life (QOL) of patients with PH is estimated to be better. However, the QOL and the needs for support have not been evaluated sufficiently in Japanese patients with PH.

Methods

To evaluate the QOL and needs for support of Japanese patients with PH, we planned a questionnaires survey targeted the members of Pulmonary Hypertension Association Japan over 16 years of age. The questionnaires consisted of the patients’ profiles, the 36-item Short Forum (SF-36v2) QOL questionnaire and our original questionnaire about the needs for support.

Results

Eighty-nine patients (17 males and 72 females, response rate: 54.8%) filled out the questionnaires. Out of 89 patients, 51 patients were pulmonary arterial hypertension, 27 patients were chronic thromboembolic PH and 11 patients were PH with combined or unknown origins. The SF-36v2 questionnaire revealed physical component summary score (34.7+/-13.2, mean+/-SD) and role-social component summary score (34.7+/-13.2) of PH patients were significantly lower compared to Japanese standard values (50). On the other hand, mental component summary score (50.9+/-9.9) of the patients was equal to Japanese standard values (50). The questionnaire according to the needs for support clarified the level of satisfaction about familial support was high. In contrary, the level of satisfaction about social support, understanding of colleagues about patients’ life with PH and the information provision about PH were low.

Conclusions

We demonstrated that role-social component of QOL is still compromised in Japanese patients with PH. It is hoped that the enhancement of social support including the awareness of PH is made to improve role-social component of QOL in addition to the physical and mental components.