Health status and satisfaction of asymptomatic HIV‐positive haemophiliacs in Kyushu, Japan

Abstract

The purpose of this study was to elucidate the effects of human immunodeficiency virus (HIV) on haemophiliacs with physical functional disabilities induced by haemophilia in Kyushu, Japan. The subjects were 38 adult haemophiliacs who were selected from 129 patients registered with the North Kyushu Haemophilia Centre. They were divided into 21 asymptomatic HIV-positive and 17 HIV-negative adult haemophiliacs. Coagulation factor levels, modified DePalma classification, Arthritis Impact Measurement Scale 2 (AIMS 2), and a satisfaction in daily life (SDL) questionnaire were used to investigate the clinical severity of their haemophilia and arthropathy, physical functional disabilities, and satisfaction. Although there were no significant differences in the objective assessments of health status between the HIV-positive and -negative haemophiliacs, the HIV-positive haemophiliacs were significantly more dissatisfied with their social activities and mood, according to AIMS 2, and with social intercourse, job, self-development, and social security and pension according to SDL assessment. These dissatisfactions were due to the effects of HIV, in addition to the physical functional disabilities that were caused by haemophilia. Dissatisfaction with social security and pension may be a specific feature in HIV-positive haemophiliacs in Japan resulting from the origin of HIV infection.

Health‐related quality of life assessment in adult haemophilia patients: a systematic review and evaluation of instruments

“…Tanaka et al . [30] and Triemstra et al . [31] selected various types of patient‐reported outcomes instruments to address various aspects of the ‘well‐being’ of haemophilia patients.…”

Evaluation of outcome of care in patients with haemophilia

“…Tanaka et al . [25] used the AIMS2 and a Satisfaction with Daily Life (SDL) questionnaire to evaluate QoL in 21 asymptomatic HIV positive and 17 HIV negative patients. The AIMS2 demonstrated that the HIV positive patients were significantly more dissatisfied with social activities and had lower mood.…”

“…The SDL questionnaire identified more differences than the AIMS2 and was therefore considered to be more responsive. There were no significant differences between the groups in overall satisfaction or health perception [25]. There were also no differences in the clinical severity of arthropathy between groups; however, this was only determined by X‐ray changes that may not be a sensitive measure of clinical symptoms [26].…”

Characteristics of disabilities in patients with subacutemyelo-optico-neuropathy living at home: Satisfaction in daily life and short form-36

“…SDL had seven items on a 5-point scale, and was revised to have 11 items on a 5-point scale in order to make this universally adaptable to elderly persons, based on the results of a random sampling study on the factors involved in the satisfaction of daily living for elderly individuals living at home [7]. Later, we also proved the validity of SDL in using for patients with stroke living at home [8], elderly persons living at home [9] and hemophiliacs [10].…”