Quality of life in ALS depends on factors other than strength and physical function

Simmons, Zachary; Bremer, Barbara A.; Robbins, Rosemary A.; Walsh, Susan; Fischer, S.

doi:10.1212/wnl.55.3.388

Cited by 239 publications

(185 citation statements)

References 26 publications

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“…However, the role of religiosity/spirituality in decision-making was not specifically asked about and this could be seen as a limitation: religiosity (found elsewhere to maintain quality of life in pwALS [44]) may be something that is only discussed once prompted. In our related quantitative study where pwALS were specifically asked about religiosity, lower levels of religiosity were more likely to be associated with intervention refusal [17].…”

Section: Discussionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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word count: 174 words 2 ABSTRACTThe objective was to identify factors associated with decisions made by patients with Amyotrophic Lateral Sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study.Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present.Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: i) patientcentric factors (including perceptions of control, acceptance and need, and aspects of fear); ii) external factors (including roles played by healthcare professionals, family, and information provision); and iii) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were interrelated. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.3

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Section: Discussionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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“…At home, particular attention is placed to family dynamics; the intervention here is characterized by the creation of a proper setting. In Help Groups the psychologist focuses on the resources of each participant; coping strategies [29] are shared among the participants to face distress and to create a networking against existential isolation [18][19][20][21][22][23][24][25][26][27][28][29][30]. During the last decade, attention to psychological approach in neuromuscular diseases increased [31], nevertheless a definite model of intervention is absent and there is a lack of guidelines in literature.…”

Section: Discussionmentioning

confidence: 99%

“…Psychological intervention during the progression of the disease consists in one or more psychoeducational sessions, psychological support and mediation. The aim is to restrain the distress and to reinforce the resources of the context [17][18][19][20][21].…”

Section: It Is Recommended To Plan Periodical Meetings With the Care mentioning

confidence: 99%

Psychological Intervention in Amyotrophic Lateral Sclerosis: Suggestions for Clinical Practice

Marconi¹

2017

JPCPY

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Objective: The present work collects considerations on the state of the art and the exchange of psychologists' professional opinions from all over Italy. Psychological support is offered along the whole progress of the disease, thus different settings are required. In this work we considered the three main areas of psychological intervention: hospital, home, help group. Main outcome measures:Qualitative approach was used to analyze suggestions from psychologists working in the ALS field. Focus groups were used to collect data.Results: Specific suggestions for each context were obtained collecting data from professional focus groups as the main purpose of the work. Conclusion:The base assumption for all of the professionals is to respect each patient's need and value. Common objectives of this area are promoting awareness, improving adjustment and reducing emotional distress, together with support in communication and decision-making processes.

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“…Multiple studies in several populations have shown that nonmotor symptoms over time are among the most function-limiting for patients, and affect caregiver burden and overall quality of life more than motor symptoms. [54][55][56] The management of these debilitating symptoms depends on their recognition by physicians. 57 Research suggests that as many as 50% of patients with PD who have depression are not treated, despite evidence that treatment parallels that of the general population (e.g., selective serotonin reuptake inhibitors for depression and anxiety).…”

Section: Symptom Assessment and Managementmentioning

confidence: 99%

Palliative care and neurology: Time for a paradigm shift

Gillum¹,

Kluger

2015

Neurology

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Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. Neurology ®

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Quality of life in ALS depends on factors other than strength and physical function

Cited by 239 publications

References 26 publications

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Psychological Intervention in Amyotrophic Lateral Sclerosis: Suggestions for Clinical Practice

Palliative care and neurology: Time for a paradigm shift

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