Between Hope and Despair: ALS patients and riluzole.

S.F.S. Jensen; F.B. Kristensen; B. Rudbeck; H. Sigmund; Thorkil Thorsen

Between Hope and Despair: ALS patients and riluzole.

S.F.S. Jensen, F.B. Kristensen, B. Rudbeck, H. Sigmund, Thorkil Thorsen

Forskningsenheden for Almen Praksis

Abstract

Amyotrophic lateral sclerosis (ALS), or motor neurone disease (MND), is a severe, chronic illness with a fatal outcome. The disease is characterised by a steadily progressive course, during which the muscles of the body gradually waste away, resulting in extensive handicap. The sufferers retain consciousness, their intellect and their personality, however. There is no effective treatment at this time, but the new drug riluzole is thought to be able to prolong life to a certain extent.This report is based upon a study and assessment of riluzole, which is used to treat ALS. The sufferers' perceptions and experience of their disease were investigated using research interviews with ALS patients and their nearest relatives. Interviews with the neurologists treating them were also carried out. Their perceptions of the disease and its treatment are given less attention, since the patient's perspective formed the primary focus of the study.We learn about the sufferers' first symptoms, and about how difficult it can be to get a diagnosis for these. We gain insight into the patients' experience of life with the illness, how they acquire knowledge about the disease, and what significance they attach to patient associations. We hear about their reflections on why they became ill. Finally, we gain insight into the thought, reflections and experiences arising in connection with the decision to accept or refuse riluzole treatment. The picture emerging isthat of patients as active participants in the medical process, with the strength and ability to participate in decisions relating to the disease and its treatment.In addition, the report contains a short appraisal of the clinical, organisational and health economic aspects of riluzole treatment.

Originalsprog	Engelsk

Udgivelsessted	Copenhagen
Status	Udgivet - 1998

Citationsformater

@book{348b39e0af6911debc73000ea68e967b,

title = "Between Hope and Despair: ALS patients and riluzole.",

abstract = "Amyotrophic lateral sclerosis (ALS), or motor neurone disease (MND), is a severe, chronic illness with a fatal outcome. The disease is characterised by a steadily progressive course, during which the muscles of the body gradually waste away, resulting in extensive handicap. The sufferers retain consciousness, their intellect and their personality, however. There is no effective treatment at this time, but the new drug riluzole is thought to be able to prolong life to a certain extent.This report is based upon a study and assessment of riluzole, which is used to treat ALS. The sufferers' perceptions and experience of their disease were investigated using research interviews with ALS patients and their nearest relatives. Interviews with the neurologists treating them were also carried out. Their perceptions of the disease and its treatment are given less attention, since the patient's perspective formed the primary focus of the study.We learn about the sufferers' first symptoms, and about how difficult it can be to get a diagnosis for these. We gain insight into the patients' experience of life with the illness, how they acquire knowledge about the disease, and what significance they attach to patient associations. We hear about their reflections on why they became ill. Finally, we gain insight into the thought, reflections and experiences arising in connection with the decision to accept or refuse riluzole treatment. The picture emerging isthat of patients as active participants in the medical process, with the strength and ability to participate in decisions relating to the disease and its treatment.In addition, the report contains a short appraisal of the clinical, organisational and health economic aspects of riluzole treatment.",

author = "S.F.S. Jensen and F.B. Kristensen and B. Rudbeck and H. Sigmund and Thorkil Thorsen",

year = "1998",

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TY - RPRT

T1 - Between Hope and Despair: ALS patients and riluzole.

AU - Jensen, S.F.S.

AU - Kristensen, F.B.

AU - Rudbeck, B.

AU - Sigmund, H.

AU - Thorsen, Thorkil

PY - 1998

Y1 - 1998

N2 - Amyotrophic lateral sclerosis (ALS), or motor neurone disease (MND), is a severe, chronic illness with a fatal outcome. The disease is characterised by a steadily progressive course, during which the muscles of the body gradually waste away, resulting in extensive handicap. The sufferers retain consciousness, their intellect and their personality, however. There is no effective treatment at this time, but the new drug riluzole is thought to be able to prolong life to a certain extent.This report is based upon a study and assessment of riluzole, which is used to treat ALS. The sufferers' perceptions and experience of their disease were investigated using research interviews with ALS patients and their nearest relatives. Interviews with the neurologists treating them were also carried out. Their perceptions of the disease and its treatment are given less attention, since the patient's perspective formed the primary focus of the study.We learn about the sufferers' first symptoms, and about how difficult it can be to get a diagnosis for these. We gain insight into the patients' experience of life with the illness, how they acquire knowledge about the disease, and what significance they attach to patient associations. We hear about their reflections on why they became ill. Finally, we gain insight into the thought, reflections and experiences arising in connection with the decision to accept or refuse riluzole treatment. The picture emerging isthat of patients as active participants in the medical process, with the strength and ability to participate in decisions relating to the disease and its treatment.In addition, the report contains a short appraisal of the clinical, organisational and health economic aspects of riluzole treatment.

AB - Amyotrophic lateral sclerosis (ALS), or motor neurone disease (MND), is a severe, chronic illness with a fatal outcome. The disease is characterised by a steadily progressive course, during which the muscles of the body gradually waste away, resulting in extensive handicap. The sufferers retain consciousness, their intellect and their personality, however. There is no effective treatment at this time, but the new drug riluzole is thought to be able to prolong life to a certain extent.This report is based upon a study and assessment of riluzole, which is used to treat ALS. The sufferers' perceptions and experience of their disease were investigated using research interviews with ALS patients and their nearest relatives. Interviews with the neurologists treating them were also carried out. Their perceptions of the disease and its treatment are given less attention, since the patient's perspective formed the primary focus of the study.We learn about the sufferers' first symptoms, and about how difficult it can be to get a diagnosis for these. We gain insight into the patients' experience of life with the illness, how they acquire knowledge about the disease, and what significance they attach to patient associations. We hear about their reflections on why they became ill. Finally, we gain insight into the thought, reflections and experiences arising in connection with the decision to accept or refuse riluzole treatment. The picture emerging isthat of patients as active participants in the medical process, with the strength and ability to participate in decisions relating to the disease and its treatment.In addition, the report contains a short appraisal of the clinical, organisational and health economic aspects of riluzole treatment.

M3 - Report

BT - Between Hope and Despair: ALS patients and riluzole.

CY - Copenhagen

ER -