Assessing and predicting successful tube placement outcomes in ALS patients

Beggs, Kathleen; Choi, Marcia; Travlos, Andrew

doi:10.3109/17482960903207377

Cited by 10 publications

(8 citation statements)

References 7 publications

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“…Delaying decisions impacts on aspects of symptom management that are time-constrained and require forward planning, such as gastrostomy insertion41,70 and uptake of mobility and communication equipment 12. The “wait and see” approach is contradictory to practice recommendations for anticipatory symptom management,38,41 early end-of-life planning,71 and timing of palliative care involvement 72.…”

Section: Discussionmentioning

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: Discussionmentioning

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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“…Beggs and colleagues, 51 in a retrospective review of 69 ALS patients from an interdisciplinary ALS clinic in British Columbia between 2000 and 2005, found an average age of 64 years at the time of feeding tube placement. Sixty‐two patients received a gastrostomy, 5 patients received gastro‐jejunostomy, and in 2 patients, the type of the feeding tube was unavailable.…”

Section: Risk Factors For Malnutrition In Amyotrophic Lateral Sclerosmentioning

confidence: 99%

“…Ninety‐four percent of patients with a weight >74% of UBW at time of feeding tube placement survived 1 month, whereas only 58.3% survived longer than 1 month if <74% of UBW at the time of placement. The authors concluded that when respiratory assessment is unavailable, percentage of UBW can be used to determine whether feeding tube placement is appropriate 51 . Loss of 10% of UBW is the threshold for placement 51 .…”

Section: Risk Factors For Malnutrition In Amyotrophic Lateral Sclerosmentioning

confidence: 99%

“…The authors concluded that when respiratory assessment is unavailable, percentage of UBW can be used to determine whether feeding tube placement is appropriate 51 . Loss of 10% of UBW is the threshold for placement 51 . NIV during the PEG procedure may be feasible in patients with respiratory compromise 52 …”

Section: Risk Factors For Malnutrition In Amyotrophic Lateral Sclerosmentioning

confidence: 99%

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Nutrition Management of Amyotrophic Lateral Sclerosis

Greenwood

2013

Nut in Clin Prac

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Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease with high risk of malnutrition. Symptoms of dysphagia, depression, cognitive impairment, difficulty with self-feeding and meal preparation, hypermetabolism, anxiety, respiratory insufficiency, and fatigue with meals increase the risk of malnutrition. Malnutrition negatively affects prognosis and quality of life, making early and frequent nutrition assessment and intervention essential. Implementation of an adequate calorie diet, dietary texture modification, use of adaptive eating utensils, and placement of a feeding tube aid in preventing malnutrition. When nutrition status is compromised by dysphagia and weight loss (5%-10% of usual body weight) or body mass index <20 kg/m(2) without weight loss and when forced vital capacity is >50%, a percutaneous endoscopic gastrostomy placement is indicated. When forced vital capacity is <50%, a radiologically inserted gastrostomy is the preferred means of enteral placement due to lessened aspiration and respiratory risk. Parenteral nutrition (PN) is indicated only when enteral nutrition (EN) is contraindicated or impossible. This article reviews the background of ALS, nutrition implications and risk of malnutrition, treatment strategies to prevent malnutrition, the role of EN and PN, and feeding tube placement methods according to disease stage.

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“…As expected, published reports suggest higher rates of morbidity and mortality in ALS patients compared with other patients undergoing PEG tube insertion. Beggs et al published a review of 69 ALS patients and documented a postprocedure infection rate of 7.2 percent, with 1.4 percent developing peritonitis [40]. Bigard and Champigneulle reported a mortality rate of 0.6 percent in the general population [41] compared with reported mortality in ALS patients as high as 11.9 percent [42].…”

Section: Early Percutaneous Endoscopic Gastrostomymentioning

confidence: 99%

Guest Editorial: Early and innovative symptomatic care to improve quality of life of ALS patients at Cleveland VA ALS Center

McClellan¹,

Washington²,

Ruff³

et al. 2013

JRRD

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INTRODUCTIONAmyotrophic lateral sclerosis (ALS) is a neurodegenerative disease of unknown etiology. However, there is good evidence to validate the theory that military service predisposes the individual to the future development of the disease [1]. As a direct result of these data, in 2008 ALS became a presumptively compensable illness for all veterans with 90 days or more of continuously active service in the military. This decision led to an influx of ALS patients into the Department of Veterans Affairs (VA) healthcare system and the development of a nationwide plan of care [2]. The implementation of this plan at the Cleveland VA Spinal Cord Injury (SCI) Division has been challenging. However, it has offered the opportunity to review current practice parameters that dictate the care of ALS patients in a new context. Using these parameters and considering the strengths and weakness of the VA healthcare system, we have made significant improvements to current practice and applied novel technology to care for ALS patients. Herein we describe these innovations and the foundation we have established to provide high quality ALS care. BACKGROUNDALS is a terminal neurodegenerative disorder. The management of patients with ALS centers almost entirely around symptomatic care. Although many studies have examined the role of particular interventions in prolonging survival after diagnosis or decreasing the rate of decline in physical ability, perhaps the most important studies guiding intervention have investigated quality of life (QoL) over the course of the disease. In 1999, the American Academy of Neurology (AAN) published the first set of formal practice parameters based on a review of the literature [3]. These evidencebased practice parameters were revised in 2009 [4] and included important updates on how care is administered, as well as recommendations regarding the use of the first disease-modifying agent available. The European Federation of Neurological Societies (EFNS) published parallel recommendations in 2005 [5], with revised and updated practice guidelines published in 2012 [6]. A third publication in 2007 also summarized current evidence-based recommendations for care of ALS patients [7]. These three sets of recommendations are nearly identical and in many instances lack precise details in terms of when and how to implement care. This reveals a need for further studies to answer basic questions regarding interventions, such as when a percutaneous endoscopic gastrostomy (PEG) tube should be placed in a patient or how early respiratory support should be provided. This information would help standardize practice parameters and allow for a higher level of symptomatic care in patients with ALS.

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Assessing and predicting successful tube placement outcomes in ALS patients

Cited by 10 publications

References 7 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

Nutrition Management of Amyotrophic Lateral Sclerosis

Guest Editorial: Early and innovative symptomatic care to improve quality of life of ALS patients at Cleveland VA ALS Center

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