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Impact and characteristics of quality of life in Japanese patients with multiple sclerosis

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Abstract

Purpose

To evaluate health-related quality of life (HRQOL) in Japanese patients with multiple sclerosis (MS) and investigate associations between the results of these QOL assessments and disease severity.

Methods

One-hundred sixty-three Japanese MS patients completed a questionnaire battery comprising the Functional Assessment of MS (FAMS), the Nottingham Adjustment Scale-Japanese version (NAS-J), and the European QOL scale (EQ-5D). Additional five factors affecting QOL as identified by MS patients in a focus group interview were also investigated: employment status, change of income, availability of disease information, communication with medical staff, and care received. Disease severity was determined using the Expanded Disability Status Scale (EDSS).

Results

There was a strong negative correlation of the subscale scores for mobility, symptoms, emotional well-being, thinking and fatigue, and additional concerns on the FAMS with EDSS score. For the NAS-J, only acceptance of the condition was correlated with disease severity. Among the five additional aspects of the condition identified by patients, employment status, income, and disease information were shown to be important for maintaining QOL in patients with MS.

Conclusions

Support for finding employment and having increased or maintained household income and readily available information about the disease contribute to improving QOL in Japanese MS patients.

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Abbreviations

MS:

Multiple sclerosis

CNS:

Central nervous system

QOL:

Quality of life

HRQOL:

Health-related quality of life

MSQLI:

Multiple Sclerosis Quality of Life Inventory

HAQUAMS:

Hamburg Quality of Life Questionnaire in Multiple Sclerosis

MSIS-29:

Multiple Sclerosis Impact Scale-29

FAMS:

Functional Assessment of Multiple Sclerosis

NAS-J:

Nottingham Adjustment Scale-Japanese version

EQ-5D:

EuroQol-5D

FGI:

Focus group interview

EDSS:

Expanded Disability Status Scale

ACTH:

Adrenocorticotropic hormone

CBT:

Cognitive behavioral therapy

RT:

Relaxation training

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Acknowledgments

We thank the following colleagues for enrolling patients in the study: Dr. Keiko Tanaka, Department of Neurology, Brain Research Institute, Niigata University; Drs. Takashi Ohashi, and Yuko Shimizu, Department of Neurology, Tokyo Women’s Medical University School of Medicine; Dr. Masahiro Iijima, Department of Neurology, Nagoya University Graduate School of Medicine, Ms. Kyoko Tsunamoto, Clinical Research Center, Utano National Hospital; Ms. Hisami Hashida, and Chie Masuda, Department of Clinical Neuroscience and Therapeutics, Graduate School of Biomedical Sciences, Hiroshima University; Drs. Ken Matsuoka, and Yuji Kawano, Department of Neurology, Neurological Institute, Graduate School of Medical Sciences, Kyushu University; and Drs. Yusei Miyazaki, Ichiro Yabe, Jun Tashiro, Riichiro Kishimoto, Department of Neurology, Hokkaido University Graduate School of Medicine. This work was supported in part by a grant from the Research Committees of Neuroimmunological Diseases, the Ministry of Health, Labor and Welfare, Japan.

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Authors and Affiliations

  1. College of Nursing, Sapporo City University, Sapporo, Japan

    Hiromi Kikuchi

  2. Department of Healthcare Systems Research, Hokkaido University Graduate School of Medicine, Sapporo, Japan

    Hiromi Kikuchi & Masaji Maezawa

  3. Department of Behavioral Science, Hokkaido University Graduate School of Letters, Sapporo, Japan

    Nobuhiro Mifune

  4. Department of Neurology, Hokkaido University Graduate School of Medicine, Kita-15, Nishi-7, Kita-ku, Sapporo, 060-8638, Japan

    Masaaki Niino

  5. Department of Sociology, Rikkyo University, Tokyo, Japan

    Sadayoshi Ohbu

  6. Department of Neurology, Neurological Institute, Graduate School of Medical Sciences, Kyushu University, Fukuoka, Japan

    Jun-ichi Kira & Hirofumi Ochi

  7. Department of Clinical Neuroscience and Therapeutics, Graduate School of Biomedical Sciences, Hiroshima University, Hiroshima, Japan

    Tatsuo Kohriyama

  8. Faculty of Science, Tokyo University of Science, Tokyo, Japan

    Kohei Ota

  9. MS Center, Utano National Hospital, Kyoto, Japan

    Masami Tanaka

  10. Department of Neurology, Nagasaki Kawatana Medical Center, Kawatana, Japan

    Shunya Nakane

  11. Department of Neurology, Sapporo-Minami National Hospital, Sapporo, Japan

    Seiji Kikuchi

Authors
  1. Hiromi Kikuchi
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  2. Nobuhiro Mifune
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  3. Masaaki Niino
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  4. Sadayoshi Ohbu
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  5. Jun-ichi Kira
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  6. Tatsuo Kohriyama
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  7. Kohei Ota
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  8. Masami Tanaka
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  9. Hirofumi Ochi
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  10. Shunya Nakane
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  11. Masaji Maezawa
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  12. Seiji Kikuchi
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Corresponding author

Correspondence to Masaaki Niino.

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Kikuchi, H., Mifune, N., Niino, M. et al. Impact and characteristics of quality of life in Japanese patients with multiple sclerosis. Qual Life Res 20, 119–131 (2011). https://doi.org/10.1007/s11136-010-9725-2

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