Nursing role in the multidisciplinary management of motor neurone disease

Skelton, Jane

doi:10.12968/bjon.2005.14.1.17367

Cited by 13 publications

(4 citation statements)

References 20 publications

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“… 2 Patients with severe dysphagia often experience weight loss, choking, and coughing on attempting to swallow, episodes of aspiration, and prolonged and effortful mealtimes. 3–6 …”

Section: Introductionmentioning

confidence: 99%

Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study

Morrison¹

2015

The Lancet Neurology

133

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SummaryBackgroundGastrostomy feeding is commonly used to support patients with amyotrophic lateral sclerosis who develop severe dysphagia. Although recommended by both the American Academy of Neurology and the European Federation of Neurological Societies, currently little evidence indicates the optimum method and timing for gastrostomy insertion. We aimed to compare gastrostomy insertion approaches in terms of safety and clinical outcomes.MethodsIn this large, longitudinal, prospective cohort study (ProGas), we enrolled patients with a diagnosis of definite, probable, laboratory supported, or possible amyotrophic lateral sclerosis who had agreed with their treating clinicians to undergo gastrostomy at 24 motor neuron disease care centres or clinics in the UK. The primary outcome was 30-day mortality after gastrostomy. This study was registered on the UK Clinical Research Network database, identification number 9923.FindingsBetween Nov 2, 2010, and Jan 31, 2014, 345 patients were recruited of whom 330 had gastrostomy. 163 (49%) patients underwent percutaneous endoscopic gastrostomy, 121 (37%) underwent radiologically inserted gastrostomy, 43 (13%) underwent per-oral image-guided gastrostomy, and three (1%) underwent surgical gastrostomy. 12 patients (4%, 95% CI 2·1–6·2) died within the first 30 days after gastrostomy: five (3%) of 163 after percutaneous endoscopic gastrostomy, four (3%) of 121 after radiologically inserted gastrostomy, and three (7%) of 43 after per-oral image-guided gastrostomy (p=0·46). Including repeat attempts in 14 patients, 21 (6%) of 344 gastrostomy procedures could not be completed: 11 (6%) of 171 percutaneous endoscopic gastrostomies, seven (6%) of 121 radiologically inserted gastrostomies, and three (6%) of 45 per-oral image-guided gastrostomies (p=0·947).InterpretationThe three methods of gastrostomy seemed to be as safe as each other in relation to survival and procedural complications. In the absence of data from randomised trials, our findings could inform clinicians and patients in reaching decisions about gastrostomy and will stimulate further research into the nutritional management in patients with amyotrophic lateral sclerosis.FundingMotor Neurone Disease Association of Great Britain and Northern Ireland (MNDA) and the Sheffield Institute for Translational Neuroscience (SITraN).

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“… 2 Patients with severe dysphagia often experience weight loss, choking, and coughing on attempting to swallow, episodes of aspiration, and prolonged and effortful mealtimes. 3–6 …”

Section: Introductionmentioning

confidence: 99%

Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study

Morrison¹

2015

The Lancet Neurology

133

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“…Вони можуть надавати емоційну підтримку, пояснювати пацієнтам та їхнім близьким характеристики хво-роби, допомагати справлятися зі стресом та невпевненістю [29][30]. Медичні сестри виступають у ролі посередників між пацієнтами, їхніми сім'ями та іншими членами медичного колективу, сприяючи координації та забезпеченню безперервного догляду [1, [31][32][33]. Окрім того, медичні сестри повинні виконувати освітню роль у центрах орфанних захворювань, -надавати інформацію пацієнтам та їхнім сім'ям про хворобу, методи лікування, превентивні заходи та рекомендації щодо поліпшення якості життя [34][35].…”

Section: вступunclassified

Knowledge and Skills of Nurses Regarding Orphan Diseases

Boyarchuk,

Antoniuk

2023

Neonatol. hìr. perinat. med.

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Introduction. The role of the nurse in providing comprehensive and individualized care to patients with rare diseases is one ofthe key roles. Nurses work closely with physicians and patients and play an educational role for patients and their families, facilitating coordination, monitoring and continuity of care. Therefore, nurses should have a certain range of knowledge and skills regarding the most common rare diseases.The aim of research was to determine the knowledge and skills of nurses regarding some specifi c rare diseases.Material and methods. An anonymous and voluntary survey of nurses was conducted at the regional children’s clinical hospitalfrom April to May 2023. A total of 63 nurses from the hospital participated in the survey. The questionnaire consisted of 27 questions related to the sociodemographic data of the respondents and rare diseases. The most common rare diseases encountered in the practice of nurses at the hospital were primary immunodefi ciencies (PID), spina bifi da (SB), cystic fi brosis, and juvenile idiopathic arthritis.The research results are presented in the form of descriptive statistics. Comparisons of frequency parameters were made using the Chi-square test. Diff erences between parameters were considered statistically signifi cant at p<0.05. Statistical analysis of the survey results was performed using the statistical package STATISTICA 10.0 and Microsoft Excel 2003 spreadsheet editor.The research and the publication of the materials were approved by the Bioethics Committee of the I. Horbachevsky Ternopil National Medical University (protocol № 73 dated 03.04.2023).The study was conducted within the framework of the research project of the Department of Children’s Diseases with PediatricSurgery of the I. Horbachevsky Ternopil National Medical University “Improvement of methods of diagnostics, treatment and rehabilitation of the most common children’s diseases”, registration number 0122U000039.Results. The majority of respondents were female (96.8%), between the ages of 31 and 50 (63.5%), and employed in the hospitalsetting (90.5%). Most were experienced workers with more than 20 years of experience (52.4%). Overall, the majority of respondents (71.0%) correctly identifi ed which diseases are rare. The percentage of correct answers regarding knowledge of rare diseases ranged from 47.9% for PID to 77.5% for SB, while correct answers regarding skills ranged from 41.3% for SB to 63.0% for PID. Overall, nurses demonstrated better knowledge than skills regarding rare diseases (p=0.0003). The most problematic issues were that HIV/AIDS was classifi ed as PID (31.7%), lack of knowledge about standards of neurogenic bladder control in children with SB (49.2%), unfamiliarity with the technique of subcutaneous immunoglobulin administration (87.3%), and bowel cleansing procedures in children with SB (95.2%), as well as infection control in patients with cystic fi brosis (66.1%).Conclusion. The study revealed a lack of awareness among nurses regarding certain rare diseases. The lowest level of knowledge was found for primary immunodefi ciencies. There is a need to improve nurses’ knowledge and skills regarding rare diseases, which can improve the quality of care for rare disease patients and their families. The development of educational interventions for nurses can help to increase their awareness of rare diseases.

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“…Dysphagia may occur in MND due to loss of coordination, weakness of muscles of mastication, weakness of tongue, and impaired swallowing. This can be complicated by weight loss, distressing choking, prolonged effortful meal times, frequent aspiration, and increase risk of chest infection [ 60 – 62 ]. Malnutrition positively correlates with a shortened survival rate and is a poor prognostic factor [ 63 ].…”

Section: Evidence For Multidisciplinary Care (Mdc) Strategies and mentioning

confidence: 99%

Multidisciplinary Interventions in Motor Neuron Disease

Williams

Philip-Ephraim

Oparah

2014

Journal of Neurodegenerative Diseases

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Motor neuron disease is a neurodegenerative disease characterized by loss of upper motor neuron in the motor cortex and lower motor neurons in the brain stem and spinal cord. Death occurs 2–4 years after the onset of the disease. A complex interplay of cellular processes such as mitochondrial dysfunction, oxidative stress, excitotoxicity, and impaired axonal transport are proposed pathogenetic processes underlying neuronal cell loss. Currently evidence exists for the use of riluzole as a disease modifying drug; multidisciplinary team care approach to patient management; noninvasive ventilation for respiratory management; botulinum toxin B for sialorrhoea treatment; palliative care throughout the course of the disease; and Modafinil use for fatigue treatment. Further research is needed in management of dysphagia, bronchial secretion, pseudobulbar affect, spasticity, cramps, insomnia, cognitive impairment, and communication in motor neuron disease.

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Nursing role in the multidisciplinary management of motor neurone disease

Cited by 13 publications

References 20 publications

Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study

Gastrostomy in patients with amyotrophic lateral sclerosis (ProGas): a prospective cohort study

Knowledge and Skills of Nurses Regarding Orphan Diseases

Multidisciplinary Interventions in Motor Neuron Disease

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