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Query: UMLS:C0002736 (amyotrophic lateral sclerosis)
 19,048 document(s) hit in 31,850,051 MEDLINE articles (0.00 seconds)

Many medical professionals feel that a choice of long-term ventilatory support leads to a life of hopeless desperation. We compared the sociodemographic, physical and psychological status of 18 amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) patients on ventilatory support for 1 to 120 months with that of 126 nonventilatory-supported ALS/MND patients. Patients filled out a comprehensive data form and completed ten psychological tests. A composite psychological status score was computed, representing a continuum from psychological distress to psychological well-being. Mann-Whitney and chi 2 tests were used to compare the two groups. There were no significant differences in sociodemographic makeup, depression, hopelessness, overall quality of life or psychological well-being. However, ventilatory-supported patients had a more internal health locus of control. Many patients on ventilatory support were able to live high quality lives. When ventilatory support is an option, we suggest that medical professionals be supportive of the patient's choices and recognise that a decision for ventilatory support is probably the best predictor of an acceptable quality of life on a ventilator.
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PMID:Evaluation of the psychological status of ventilatory-supported patients with ALS/MND. 882 Nov 86

Because the patient with amyotrophic lateral sclerosis (ALS) knows at the outset that he or she is facing an incurable and always fatal illness, the experience of hope may be different in the ALS community from that in the general palliative care community. Although the word "hope" is frequently and passionately used by both patients and professionals in the ALS community, to date there has been little published on the subject. Hopelessness and despair are a very real part of the ALS experience. But true hope, of a kind more powerful than mere physical survival, can also be part of the ALS journey. What is this "hope" the professional is expected to engender and the patient is encouraged not to lose? How can professionals help the ALS patient find hope and meaning? This article is an exploration of hope by someone who has experienced ALS, first as an occupational therapist, then as the daughter and caregiver of an ALS patient. Based on literature review and personal experience, factors leading to both hope and hopelessness are explored. Finally, the author offers several strategies that palliative care professionals can use to help ALS patients find hope.
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PMID:Beyond denial and despair: ALS and our heroic potential for hope. 1181 44

The purpose of this study was to investigate the relationship of psychosocial factors to the presence of hopelessness among patients with amyotrophic lateral sclerosis (ALS). Secondary cross-sectional analyses were conducted with data collected from 136 ALS patients. Primary research questions were examined using hierarchical multiple regression procedures. Results showed that health locus of control and purpose in life were significant predictors of hopelessness among ALS patients. Other factors, including socioeconomic and demographic variables, variables measuring length and severity of illness, and additional psychosocial variables (social support satisfaction and degree to which spiritual beliefs help to cope with ALS) were not significant predictors of hopelessness. Results are discussed in light of the benefit to ALS patients of psychosocial interventions in disease management.
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PMID:Amyotrophic lateral sclerosis and hopelessness: psychosocial factors. 1240 26

To understand the factors associated with interest in assisted suicide among terminally ill patients, we surveyed 50 caregivers of decedent amyotrophic lateral sclerosis (ALS) patients from Oregon and Washington regarding perceptions of patients' interest in assisted suicide and their physical and emotional state in the last month of life. For 38 caregivers, we had baseline information from the patients themselves, gathered a median of 11 months before death, regarding depression, hopelessness, sense of burden, social support, quality of life, pain, and suffering. According to our respondents, one-third of ALS patients discussed wanting assisted suicide in the last month of life. Hopelessness and interest in assisted suicide at baseline predicted desire for assisted suicide later on. ALS patients who were interested in assisted suicide, compared to those who were not, had greater distress at being a burden to others and more insomnia, pain, and discomfort other than pain.
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PMID:Predictors and correlates of interest in assisted suicide in the final month of life among ALS patients in Oregon and Washington. 1245 12

This study aimed at investigating attitudes toward assisted suicide among individuals with amyotrophic lateral sclerosis, and the differences in health status (illness severity and functional disability) and psychosocial adjustment (depression, perceived stress, social support, and coping) between those in favor of and those against assisted suicide. This study also aimed at describing the characteristics of terminally-ill individuals who acknowledge contemplating assisted suicide. Forty-four individuals diagnosed with amyotrophic lateral sclerosis were surveyed about their attitudes and the circumstances that would make them contemplate assisted suicide and filled out standardized measures of mood, stress, social support, coping, and illness status. Seventy percent of the sample found assisted suicide morally acceptable and 60% thought it should be legalized. In addition, 60% of patients agreed they could foresee circumstances that would make them contemplate assisted suicide, but only three (7%) indicated they would have requested it already if it had been legal. Willingness to contemplate assisted suicide was associated with reports of elevated levels of depressive symptoms and reports of hopelessness. Results highlight the need to assess psychological status carefully when terminally ill individuals begin contemplating assisted suicide or voice a request for it.
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PMID:Attitudes toward and desire for assisted suicide among persons with amyotrophic lateral sclerosis. 1568 43

Patients suffering from amyotrophic lateral sclerosis (ALS) eventually lose their ability to communicate their treatment preferences in later stages of the disease. A living will enables ALS patients to specify their choices concerning life-sustaining treatment in advance. Our premise was that completion of a living will should be preceded by a discussion between patient and physician. We conducted a qualitative study of a sample of 15 neurologists and 15 ALS patients from two neurology centers in Germany. Our aim was to explore how discussions about living wills are undertaken. Data analysis followed grounded theory techniques. Our findings showed that both the patients and the physicians considered living wills to be closely connected to forthcoming death. Physicians waited for respiratory failure to occur before they informed ALS patients about living wills, an information strategy that we called the "wait-and-see-policy". The patients completed their living will when they had accepted the hopelessness of their disease. They mostly used living will forms and did not see the necessity to set down disease-specific preferences. They intended to wait for symptoms to emerge before they made the decision about whether or not to accept life-sustaining treatment. The patients as well as the physicians pursued a wait-and-see policy towards end-of-life care, thus weakening the purpose of living wills. Our results point to the necessity and importance of an open and honest patient-physician communication which is a prerequisite for the discussion of living wills.
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PMID:Discussing living wills. A qualitative study of a German sample of neurologists and ALS patients. 1600 78

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease with no known effective treatment or cure. Clinicians often expect that ALS patients will experience depression following the diagnosis because ALS is a terminal disease. The objective of the current study was to examine the evidence from the literature on psychological health in ALS patients in order to determine the prevalence and severity of depression in this population. Twenty-eight studies of ALS patients, conducted over the past 20 years, were reviewed and evaluated. The cumulative evidence suggests that clinically significant depression is neither as prevalent nor as severe as might be expected. Methodological limitations that are inherent to the measurement of depression in ALS, including the lack of appropriate instruments, small sample sizes, and reliance on cross-sectional data, have contributed to the wide range of reported results. We conclude that ALS patients are more likely to present with hopelessness and end-of-life concerns than clinically significant depression. It is important to assess a broad range of potential psychological distress early in the course of ALS, rather than focus specifically on depression, because the manner in which patients cope with their disease can affect their longevity.
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PMID:Psychological health in patients with amyotrophic lateral sclerosis. 1765 23

The assessment of psychological morbidity in patients with ALS has centered around depression, hopelessness, and anxiety. The Brief Symptom Inventory (BSI) offers an opportunity to explore psychological morbidity more broadly. We administered this instrument to 111 patients with ALS as part of a larger study of quality of life. Scores of ALS patients on the Global Severity Index and Positive Symptom Distress Index were comparable to the majority of distressed psychiatric outpatients and significantly higher than those of non-patient adults. Among BSI subscales, scores on the Anxiety, Depression, Phobic Anxiety, and Somatization subscales also were not significantly different from distressed adult psychiatric outpatients, and were greater than normal mean scores for a non-patient population sample. Based on these data, ALS patients appear to be significantly more distressed than non-patients in the identified areas, and as distressed as approximately 68% of a distressed psychiatric outpatient sample. In conclusion, a substantial number of individuals with ALS experience psychological distress of various types. Because psychological health impacts lifespan and quality of life in these individuals, broadly-based mental health assessment and treatment should remain an important part of care for patients with ALS. The effects of physical symptoms on responses to questions used to assess psychological distress must be considered.
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PMID:Psychological morbidity in ALS: the importance of psychological assessment beyond depression alone. 2023 56

The literature on psychological aspects of amyotrophic lateral sclerosis (ALS) has explored quality of life, depression, anxiety, spirituality, hopelessness, and other constructs in an attempt to understand the patient's grief and other psychological responses to the disease. However, there is a lack of research on the efficacy of psychological interventions. We believe it is important to develop 'best practices' for the improvement of quality of life and the reduction of psychological distress related to ALS.
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PMID:Amyotrophic lateral sclerosis: time for research on psychological intervention? 2232 70

Amyotrophic lateral sclerosis is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The psychological impact of the disease is huge, on both patients and caregivers. This review summarizes studies that have investigated quality of life, depression, anxiety, pain, spiritual and existential issues, hope, and hopelessness in the ALS field, with attention to both patients and their caregivers. Psychological support and the possible role of psychologists in the ALS field are also discussed.
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PMID:Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. 2273 73


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