Patients' Perspectives of the Role of Care Providers in Amyotrophic Lateral Sclerosis

Beisecker, Analee E.; Cobb, Ann Kuckelman; Ziegler, Dewey K.

doi:10.1001/archneur.1988.00520290089019

Cited by 21 publications

(23 citation statements)

References 11 publications

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“…In their view, the management of MND centred around physical needs, with increasing physical assistance and equipment being required. This finding supports the conclusions drawn in the studies by Newrick and Langton Hewer6 and Beisecker et al 25 In this study, the lack of mobility and hand function were considered the major difficulties affecting daily life. The need for early referral to an OT has been discussed6 in relation to the provision and timing of equipment so that items of equipment can be anticipated, prior to need, for provision when required -timing being crucial to the management of MND.…”

Section: Discussionsupporting

confidence: 93%

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Perspectives of motor neurone disease

Cox

1992

Clin Rehabil

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This preliminary study explores the everyday needs and requirements of patients with motor neurone disease (MND) and indicates similarities and differences between the patient's viewpoint, that of their main carer and that of their occupational therapist (OT). The study highlights differences between the three subject groups. The MND subjects' views centred on physical needs, the carers on the emotional and psychological impact of MND and caring, while that of the OTs focused on the co-ordination of physical and psychological aspects of MND, both for patient and carer. The primary need agreed upon by all subject groups was the essential role of the carer in the management of MND.

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Section: Discussionsupporting

confidence: 93%

“…The study by Beisecker et al 25 commented that patients had sought information about the illness and how to manage the effects of the disease on a day-to-day basis, thus supporting this study's findings.…”

Section: Discussionsupporting

confidence: 79%

Perspectives of motor neurone disease

Cox

1992

Clin Rehabil

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“…A study on 35 ALS patients evaluated the patients' perception of the physicians' disclosure style. 13 Most responders categorized the style as straightforward, and considered it acceptable. Three patients perceived that the physician himself/herself was upset at having to give the diagnosis.…”

Section: Process and Content Of Diagnosis Communicationmentioning

confidence: 99%

“…The physician should not give the diagnosis immediately after the examination without reviewing and discussing the test results, since such practice might cause the patient to question whether the diagnosis has been reached prematurely. 8,13 Information should be given honestly, while preserving hope. 5,24 Three general underlying objectives of the communication process should be noted:…”

Section: Process and Content Of Diagnosis Communicationmentioning

confidence: 99%

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Breaking the news in amyotrophic lateral sclerosis

Chiò

Borasio²

2004

Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders

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Diagnosis communication is a mainstay of the patient-physician relationship and in ALS represents the beginning of the treatment. In Europe, the diagnosis is now communicated to most patients, but with some differences from north to south. Communication is the basis of the patient's autonomy. When adequately informed, patients are able to consider their preferences about life-extending interventions. However, this discussion is sometimes entertained too late. Both the style and the context of this discussion have profound impact on patient satisfaction. The content of the communication should include all relevant information about the disease and should be performed honestly while preserving hope. Collusion with relatives can create difficulties in the relationship with a patient and isolate them from their family. Diagnostic communication is an ongoing process and should form part of every follow-up visit. Communication with the dying patient is often reinforced by non-verbal messages, acknowledgements of patients' emotions, and by listening. Written material may increase satisfaction of patients and their relatives, but should never substitute for face-to-face discussion.

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Impact of riluzole on the relationship between patient and physician

Dengler

Tröger

1997

J Neurol

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To date, there has been little systematic research on the patient-physician relationship in amyotrophic lateral sclerosis (ALS). Important factors in this relationship are the emotional state, or mood, of the patients and their expectations of successful therapeutic intervention. In many patients there is a gradual deterioration of mood with disease progression-a view supported by studies comparing the initial and late phases of the disease. The few studies examining patients' expectations of therapy revealed a strong desire to be informed about the disease and its course without destroying every hope. In the later stages of the disease patients expected compassion and help with immediate problems. To our knowledge there has been no systematic study on the attitude of physicians towards ALS patients. The lack of effective treatment and the wish to avoid full information about the poor prognosis are almost unique problems involved in dealing with ALS patients. The new option to treat with a drug that slows disease progression provides some alleviation for the physician. Riluzole, at least, partially meets this expectation. Although its efficacy is too limited to satisfy fully the wishes of patients and physicians, it is the first available drug that has been shown to slow disease progression. Thus, it may bring to an end the feeling that there is nothing that can be done for these patients. In our experience this provides relevant alleviation in the management of ALS patients.

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Patients' Perspectives of the Role of Care Providers in Amyotrophic Lateral Sclerosis

Cited by 21 publications

References 11 publications

Perspectives of motor neurone disease

Perspectives of motor neurone disease

Breaking the news in amyotrophic lateral sclerosis

Impact of riluzole on the relationship between patient and physician

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