Correlates of suffering in amyotrophic lateral sclerosis

Linda Ganzini, Wendy S. Johnston, William F. Hoffman

    Research output: Contribution to journalArticle

    173 Citations (Scopus)

    Abstract

    Objectives: 1) To determine the prevalence of pain, suffering, poor quality of life, depression, and hopelessness in people with ALS, and the correlates of suffering and poor quality of life; 2) to analyze the relationship between pain, suffering, quality of life, and attitudes toward life-sustaining medical treatment and physician-assisted suicide; and 3) to determine concordance between patients with ALS and their caregivers in rating the patients' pain, quality of life, and suffering. Methods: Subjects completed a single interview. We measured the subject's pain, quality of life, suffering, hopelessness, depression, social support, perception of burden to others, level of disability, desire for life-sustaining medical treatment, and interest in assisted suicide. Caregivers also rated the patient's quality of life, pain, and suffering. Results: A total of 100 subjects with ALS and 91 caregivers participated. Suffering was rated as 4 or greater on a six-point scale by 20% of subjects with ALS, and 19% rated their pain as 4 or greater on a six-point scale. Eleven percent had clinical depression. Physicians frequently failed to recognize and treat pain and depression. The correlates of suffering were increasing pain, hopelessness, and level of disability. The correlates of poor quality of life were poor social support and increasing hopelessness. The correlation between subjects' and caregivers' rating of the patient's suffering was r = 0.47. There was no relationship between subjects' ratings of pain, suffering, and quality of life, and their interest in life-sustaining treatment or physician-assisted suicide. Conclusion: Many patients with ALS suffer, and their suffering is correlated to pain and hopelessness. Physicians caring for patients with ALS frequently fail to recognize and treat their patients' pain and depression.

    Original languageEnglish (US)
    Pages (from-to)1434-1440
    Number of pages7
    JournalNeurology
    Volume52
    Issue number7
    StatePublished - Apr 22 1999

    Fingerprint

    Amyotrophic Lateral Sclerosis
    Pain
    Psychological Stress
    Quality of Life
    Assisted Suicide
    Caregivers
    Depression
    Social Support
    Social Perception
    Physicians
    Therapeutics
    Interviews

    ASJC Scopus subject areas

    • Neuroscience(all)

    Cite this

    Ganzini, L., Johnston, W. S., & Hoffman, W. F. (1999). Correlates of suffering in amyotrophic lateral sclerosis. Neurology, 52(7), 1434-1440.

    Correlates of suffering in amyotrophic lateral sclerosis. / Ganzini, Linda; Johnston, Wendy S.; Hoffman, William F.

    In: Neurology, Vol. 52, No. 7, 22.04.1999, p. 1434-1440.

    Research output: Contribution to journalArticle

    Ganzini, L, Johnston, WS & Hoffman, WF 1999, 'Correlates of suffering in amyotrophic lateral sclerosis', Neurology, vol. 52, no. 7, pp. 1434-1440.
    Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999 Apr 22;52(7):1434-1440.
    Ganzini, Linda ; Johnston, Wendy S. ; Hoffman, William F. / Correlates of suffering in amyotrophic lateral sclerosis. In: Neurology. 1999 ; Vol. 52, No. 7. pp. 1434-1440.
    @article{a83794d8f42c451294f559ca1939177c,
    title = "Correlates of suffering in amyotrophic lateral sclerosis",
    abstract = "Objectives: 1) To determine the prevalence of pain, suffering, poor quality of life, depression, and hopelessness in people with ALS, and the correlates of suffering and poor quality of life; 2) to analyze the relationship between pain, suffering, quality of life, and attitudes toward life-sustaining medical treatment and physician-assisted suicide; and 3) to determine concordance between patients with ALS and their caregivers in rating the patients' pain, quality of life, and suffering. Methods: Subjects completed a single interview. We measured the subject's pain, quality of life, suffering, hopelessness, depression, social support, perception of burden to others, level of disability, desire for life-sustaining medical treatment, and interest in assisted suicide. Caregivers also rated the patient's quality of life, pain, and suffering. Results: A total of 100 subjects with ALS and 91 caregivers participated. Suffering was rated as 4 or greater on a six-point scale by 20{\%} of subjects with ALS, and 19{\%} rated their pain as 4 or greater on a six-point scale. Eleven percent had clinical depression. Physicians frequently failed to recognize and treat pain and depression. The correlates of suffering were increasing pain, hopelessness, and level of disability. The correlates of poor quality of life were poor social support and increasing hopelessness. The correlation between subjects' and caregivers' rating of the patient's suffering was r = 0.47. There was no relationship between subjects' ratings of pain, suffering, and quality of life, and their interest in life-sustaining treatment or physician-assisted suicide. Conclusion: Many patients with ALS suffer, and their suffering is correlated to pain and hopelessness. Physicians caring for patients with ALS frequently fail to recognize and treat their patients' pain and depression.",
    author = "Linda Ganzini and Johnston, {Wendy S.} and Hoffman, {William F.}",
    year = "1999",
    month = "4",
    day = "22",
    language = "English (US)",
    volume = "52",
    pages = "1434--1440",
    journal = "Neurology",
    issn = "0028-3878",
    publisher = "Lippincott Williams and Wilkins",
    number = "7",

    }

    TY - JOUR

    T1 - Correlates of suffering in amyotrophic lateral sclerosis

    AU - Ganzini, Linda

    AU - Johnston, Wendy S.

    AU - Hoffman, William F.

    PY - 1999/4/22

    Y1 - 1999/4/22

    N2 - Objectives: 1) To determine the prevalence of pain, suffering, poor quality of life, depression, and hopelessness in people with ALS, and the correlates of suffering and poor quality of life; 2) to analyze the relationship between pain, suffering, quality of life, and attitudes toward life-sustaining medical treatment and physician-assisted suicide; and 3) to determine concordance between patients with ALS and their caregivers in rating the patients' pain, quality of life, and suffering. Methods: Subjects completed a single interview. We measured the subject's pain, quality of life, suffering, hopelessness, depression, social support, perception of burden to others, level of disability, desire for life-sustaining medical treatment, and interest in assisted suicide. Caregivers also rated the patient's quality of life, pain, and suffering. Results: A total of 100 subjects with ALS and 91 caregivers participated. Suffering was rated as 4 or greater on a six-point scale by 20% of subjects with ALS, and 19% rated their pain as 4 or greater on a six-point scale. Eleven percent had clinical depression. Physicians frequently failed to recognize and treat pain and depression. The correlates of suffering were increasing pain, hopelessness, and level of disability. The correlates of poor quality of life were poor social support and increasing hopelessness. The correlation between subjects' and caregivers' rating of the patient's suffering was r = 0.47. There was no relationship between subjects' ratings of pain, suffering, and quality of life, and their interest in life-sustaining treatment or physician-assisted suicide. Conclusion: Many patients with ALS suffer, and their suffering is correlated to pain and hopelessness. Physicians caring for patients with ALS frequently fail to recognize and treat their patients' pain and depression.

    AB - Objectives: 1) To determine the prevalence of pain, suffering, poor quality of life, depression, and hopelessness in people with ALS, and the correlates of suffering and poor quality of life; 2) to analyze the relationship between pain, suffering, quality of life, and attitudes toward life-sustaining medical treatment and physician-assisted suicide; and 3) to determine concordance between patients with ALS and their caregivers in rating the patients' pain, quality of life, and suffering. Methods: Subjects completed a single interview. We measured the subject's pain, quality of life, suffering, hopelessness, depression, social support, perception of burden to others, level of disability, desire for life-sustaining medical treatment, and interest in assisted suicide. Caregivers also rated the patient's quality of life, pain, and suffering. Results: A total of 100 subjects with ALS and 91 caregivers participated. Suffering was rated as 4 or greater on a six-point scale by 20% of subjects with ALS, and 19% rated their pain as 4 or greater on a six-point scale. Eleven percent had clinical depression. Physicians frequently failed to recognize and treat pain and depression. The correlates of suffering were increasing pain, hopelessness, and level of disability. The correlates of poor quality of life were poor social support and increasing hopelessness. The correlation between subjects' and caregivers' rating of the patient's suffering was r = 0.47. There was no relationship between subjects' ratings of pain, suffering, and quality of life, and their interest in life-sustaining treatment or physician-assisted suicide. Conclusion: Many patients with ALS suffer, and their suffering is correlated to pain and hopelessness. Physicians caring for patients with ALS frequently fail to recognize and treat their patients' pain and depression.

    UR - http://www.scopus.com/inward/record.url?scp=0033594435&partnerID=8YFLogxK

    UR - http://www.scopus.com/inward/citedby.url?scp=0033594435&partnerID=8YFLogxK

    M3 - Article

    VL - 52

    SP - 1434

    EP - 1440

    JO - Neurology

    JF - Neurology

    SN - 0028-3878

    IS - 7

    ER -