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Communicating the diagnosis: a survey of patients with amyotrophic lateral sclerosis and their families in Japan

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Abstract

Objective

To assess the needs of patients with amyotrophic lateral sclerosis (ALS) and their families when being communicated the diagnosis.

Methods

We held a nationwide webinar in September 2020, titled “ALS Café”, and distributed a self-report questionnaire to participants.

Patients

This cross-sectional study included 56 respondents (patients, n = 32; family members, n = 24).

Results

Of the 56 respondents, 47 (84%) reported being anxious when they were communicated their diagnosis. The average time allocated for communicating the diagnosis was 36.3 ± 25.6 min, and 30% of respondents believed that insufficient time was allocated. Nearly half of the respondents were communicated their diagnosis by one physician, and 57% of the respondents received their diagnosis in one session. Approximately 80% of respondents received information about ventilators when they were being communicated their diagnosis, but most patients did not want to receive this information at that time. The anxious group tended to answer that the time to communicate the diagnosis was short. Meanwhile, all respondents in the mildly anxious group were provided with one or more information about the supportive contents along with the diagnosis. Moreover, in Japan, many patients with ALS and their families desire the legalization of euthanasia, which might affect decision-making.

Conclusions

This study shows that a longer amount of time spent communicating the diagnosis and provision of descriptions needed by patients and their families are important. This can help clinicians understand what the patient requires while being communicated their diagnosis.

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Abbreviations

ALS:

Amyotrophic lateral sclerosis

TIV:

Tracheostomy and invasive ventilator

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Acknowledgements

The authors would like to acknowledge Mrs. Yurika Okuma, executive assistant at the Department of Neurology, Toho University Faculty of Medicine, who supported this study.

Funding

This work was partially supported by Grants-in-Aid from the Research Committee of CNS Degenerative Disease, the Ministry of Health, Labour and Welfare of Japan.

Author information

Authors and Affiliations

  1. Department of Neurology, Toho University Faculty of Medicine, Tokyo, Japan

    Takehisa Hirayama, Mari Shibukawa & Osamu Kano

  2. Department of Neurology, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan

    Yuishin Izumi

  3. Unit for Intractable Disease Nursing Care, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan

    Yuki Nakayama

  4. Department of Rehabilitation Medicine, Toho University Faculty of Medicine, Tokyo, Japan

    Satoru Ebihara

Authors
  1. Takehisa Hirayama
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  2. Yuishin Izumi
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  3. Yuki Nakayama
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  4. Mari Shibukawa
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  5. Satoru Ebihara
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  6. Osamu Kano
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Contributions

TH and OK performed and reviewed literature searches, interpreted, and drafted the manuscript, and have both agreed to be personally accountable for the accuracy and integrity of the entire work. TH, OK, YI, YN and SE created a questionnaire and conducted a questionnaire survey. TH, OK, and MS aggregated and analyzed the results of the questionnaire. All authors reviewed and revised the manuscript and approved the final manuscript.

Corresponding author

Correspondence to Osamu Kano.

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Conflict of interest

All the authors report no conflict of interest relevant to the manuscript.

Availability of data and material

The data that support the findings of this study are available on request from the corresponding author, OK. The data are not publicly available as that contain information that could compromise the privacy of research participants.

Ethics approval

This study was conducted in accordance with ethical standards of the Ethics Committee of the Toho University Omori Hospital (reference no. M20020) and the Declaration of Helsinki for biomedical research involving human subjects.

Informed consent

Informed consent was obtained from all participants.

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Hirayama, T., Izumi, Y., Nakayama, Y. et al. Communicating the diagnosis: a survey of patients with amyotrophic lateral sclerosis and their families in Japan. Acta Neurol Belg 122, 471–478 (2022). https://doi.org/10.1007/s13760-021-01801-3

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  • DOI: https://doi.org/10.1007/s13760-021-01801-3

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