Power Wheelchair Prescription, Utilization, Satisfaction, and Cost for Patients With Amyotrophic Lateral Sclerosis: Preliminary Data for Evidence-Based Guidelines

Ward, Amber; Sanjak, Mohammed; Duffy, Kerry; Bravver, Elena; Williams, Nicole; Nichols, Mindy; Brooks, Benjamin Rix

doi:10.1016/j.apmr.2009.10.023

Cited by 56 publications

(35 citation statements)

References 17 publications

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“…Against this background, patients make many decisions concerning symptom management and quality of life throughout the course of the disease. Decisions may include choices between invasive and noninvasive ventilation,7–9 insertion of gastrostomy to facilitate adequate nutrition and hydration,10,11 choices of mobility and communication equipment as independence decreases,12,13 completion of advance care plans anticipating future needs,14 involvement with home-based or inpatient palliative care services,15 and preferences for end-of-life care 16,17…”

Section: Introductionmentioning

confidence: 99%

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

111

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BackgroundPatients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.MethodsAn exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.ResultsDecision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.ConclusionDecision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

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Section: Introductionmentioning

confidence: 99%

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

111

View full text Add to dashboard Cite

show abstract

“…Care is underpinned by recurrent decisions about symptom management and quality of life as the patient’s condition deteriorates 11. Patients’ decisions may include uptake of artificial nutrition and hydration,12 assisted ventilation,13,14 equipment needs,15,16 advance care plans,17 palliative care,18 and endof-life choices 19,20…”

Section: Introductionmentioning

confidence: 99%

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

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BackgroundThe aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making.MethodsThirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically.ResultsRespondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information.ConclusionPatient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.

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“…Due to difficulties in obtaining insurance reimbursement for more than one wheelchair, it is recommended that ALS patients rent or borrow a manual or transport wheelchair instead of purchasing one. Insurance coverage should be reserved for the expensive (Ward et al, 2010), customized power wheelchairs. Proper seating and positioning in the wheelchair are critical to ensure comfort and prevent secondary problems such as skin breakdown and back pain.…”

Section: Early Als: Exercise and Adaptive Equipmentmentioning

confidence: 99%

Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis

Paganoni

Karam

Joyce

et al. 2015

NRE

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Background Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) is a neurodegenerative disease that results in progressive muscle weakness and wasting. There is no known cure and the disease is uniformly fatal. Purpose This review discusses current concepts in ALS care, from breaking the diagnosis to end-of-life care. People with ALS have several multidisciplinary needs due to a complex and dynamic disease process. They benefit from rehabilitation interventions that are individualized and have the goal of optimizing independence, function, and safety. These strategies also help minimize symptomatic burden and maximize quality of life. Conclusion Patient-centered, multidisciplinary care has a significant impact on the life of people with ALS and is the current standard of care for this patient population.

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Power Wheelchair Prescription, Utilization, Satisfaction, and Cost for Patients With Amyotrophic Lateral Sclerosis: Preliminary Data for Evidence-Based Guidelines

Cited by 56 publications

References 17 publications

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis

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