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Involving children and young people in how healthcare is organised
Published in Ruth Chambers, Kirsty Licence, AI Aynsley-Green, Looking after Children in Primary Care, 2018
Trust’s Patients Advice and Liaison Groups (PALS) should be accessible to everyone, including children and young people.15 So PALS should be proactive in approaching children and young people to obtain their views of health services through: email, working through and with others, e.g. youth workers, childcare facilitators, visiting and talking to children and young people, via parents and young people groups or councils or advisory panels (combined patient/child or individual groups) or schools councils (SC) or healthy school partnership models.
Management of a patient with amyotrophic lateral sclerosis
Published in Margaret Walshe, Maggie-Lee Huckabee, Clinical Cases in Dysphagia, 2018
Paige Nalipinski, Stacey Sullivan
PALS are often seen in a multidisciplinary center where clinical experts help facilitate optimal care that addresses the complex needs associated with the disease. Research suggests that survival is improved when patients participate in this model of care (Traynor et al., 2003). During each visit, a patient will meet with a neurologist, registered nurse (RN), physiotherapist (PT), occupational therapist (OT), SLP and research coordinators, when appropriate. Also available to the patient may be a brace clinic, respiratory therapy (RT) and nutrition services, as needed (Paganoni et al., 2015).
Pleural space problems
Published in Larry R. Kaiser, Sarah K. Thompson, Glyn G. Jamieson, Operative Thoracic Surgery, 2017
Konrad Hoetzenecker, Walter Klepetko
PAL due to parenchymal leakage can be treated in the following ways:The vast majority of PALs will eventually close in the course of time. Chest tubes should be reduced to one drainage tube and a mobile drainage system or a chest drain valve can be installed. Patients can be fully mobilized and discharged from hospital with these devices. Prolonged antibiotic coverage is necessary and patients should be regularly checked up on, on an outpatient basis. When air leakage subsides and chest radiography is inconspicuous, the chest tube can be removed.There is limited evidence that installation of autologous blood in the pleural space might be successful in treating PAL. As the exact volume of blood is not clear and the risk of infections and empyema is increased, this is not routinely used.Another novel approach is the temporary implantation of an endobronchial one-way valve into the affected segmental or subsegmental bronchus.
ALSUntangled #65: glucocorticoid corticosteroids
Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2023
Jill Ann Goslinga, Mark Terrelonge, Richard Bedlack, Paul Barkhaus, Benjamin Barnes, Tulio Bertorini, Mark Bromberg, Gregory Carter, Amy Chen, Jesse Crayle, Mazen Dimachkie, Leanne Jiang, Gleb Levitsky, Isaac Lund, Sarah Martin, Christopher Mcdermott, Gary Pattee, Kaitlyn Pierce, Dylan Ratner, Lenka Slachtova, Yuyao Sun, Paul Wicks
An open-label clinical trial (NCT01884571 (18)) enrolled 31 PALS to assess the effect of immune modulation on ALS disease progression and biomarkers. PALS were treated with a combination of multiple immunosuppressants: basiliximab (20 mg IV on days 1 and 4), tacrolimus (1–5 mg twice daily titrated to goal trough 4–8 ng/mL, for 6 months), mycophenolate mofetil (titrated up to 1000 mg twice daily, for 6 months), and prednisone (methylprednisolone 125 mg IV once, then prednisone 60 mg daily tapered down to 10 mg daily over 1 month). Outcome measures included monthly ALSFRS-R. CSF cytokines including IL-2, 4, and 6 were assessed as well. Overall, this immunosuppression regimen had no effect on the rate of ALSFRS-R decline (compared to the rate of decline before treatment). In addition, no change in peripheral regulatory T lymphocyte populations was observed. Of note, CSF IL-2 levels were increased post-immunosuppression, then later decreased after cessation of treatment. The clinical implication of this finding is unclear; IL-2 maintains regulatory T lymphocytes to prevent autoimmunity as well as stimulates T lymphocytes to promote the immune response (19).
Refining items for a preference-based, amyotrophic lateral sclerosis specific, health-related quality of life scale
Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2022
Jill Van Damme, Ayse Kuspinar, Wendy Johnston, Colleen O’Connell, John Turnbull, Marvin Chum, Patricia Strachan, Westerly Luth, Shane McCullum, Nicole Peters, Joy MacDermid, Vanina Dal Bello-Haas
Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disease with no known cure (1). ALS, increasingly acknowledged as a multi-system disease (2), causes upper and lower motor neuron, cognitive, and behavioral signs and sytmptoms (1). The progressive nature of the disease (1) results in loss of function and autonomy (3). Over time people with ALS (PALS) become increasingly dependent on others for care, resulting in both physical and emotional concerns (3). Care plans should be developed collaboratively with PALS to maximize function and independence, manage symptoms, and address goals (2). Measuring health-related quality of life (HRQL) is important when evaluating whether care plans are meeting PALS' needs (4,5). HRQL refers to the “aspects of self-perceived well-being that are related to or affected by the presence of disease or treatment” (6, p. 1834). HRQL is distinct from quality of life (QoL) which describes general well-being (7). HRQL provides clinicians and researchers with a quantitative measure to understand the impact of ALS and its treatment, compare interventions, predict PALS outcomes (4), and incorporate PALS’ perspectives on the evaluation of care (8).
A Four-Year-Old with History of Kawasaki Disease Presenting in Acute Shock
Published in Prehospital Emergency Care, 2021
Katherine Staats, Adriana H. Tremoulet, Helen Harvey, Jane C. Burns, J. Joelle Donofrio-Odmann
With pre-arrival forewarning by EMS to the ED, preparations for these sick children can make the difference between life and death. Knowing their potential to have coronary artery associated pathology, physicians can ready the department for the ill child and have the necessary specialists primed to assist and potentially intervene. While our case was not a candidate for ECMO the discussion did take place and this technology is being increasingly used. In fact, extracorporeal cardiopulmonary resuscitation has been suggested by 2015 PALS to be considered for pediatric patients with cardiac diagnoses who have in hospital cardiac arrests in settings with existing ECMO protocols, expertise and equipment (3). Prehospital warning about these patients and the acuity of their condition, if in shock, can help prepare for the necessary personnel and equipment upon patient arrival.