Non-invasive ventilation for people with neuromuscular disorders in Australia and New Zealand: a qualitative study of clinician perspectives.
Health services research
Health systems
Neuromuscular diseases
Respiration disorders
Journal
The Medical journal of Australia
ISSN: 1326-5377
Titre abrégé: Med J Aust
Pays: Australia
ID NLM: 0400714
Informations de publication
Date de publication:
18 09 2023
18 09 2023
Historique:
revised:
22
05
2023
received:
30
12
2022
accepted:
29
05
2023
medline:
19
9
2023
pubmed:
14
7
2023
entrez:
14
7
2023
Statut:
ppublish
Résumé
To explore the experiences of Australian and New Zealand clinicians with respect to care pathways, their awareness and use of non-invasive ventilation guidelines, and their perspectives on delivering quality non-invasive ventilation services to people with neuromuscular disorders. Qualitative study; semi-structured focus groups and individual interviews with Australian and New Zealand clinicians who provide non-invasive ventilation services to people with neuromuscular disorders, recruited from participants at a 2017 sleep medicine conference. Interviews were conducted during 1 October 2017 - 31 May 2018. Major themes identified by an iterative, semantic, and inductive analysis. A total of 28 participants attended the four focus group sessions and five individual interviews; fourteen each from New Zealand and Australia, seventeen women and eleven men, eighteen physicians and ten other clinicians. Two major themes were identified: decision making for current practice, and resource constraints. Participants noted variable use of clinical guidelines and limited training to meet the needs of people with neuromuscular disorders who require non-invasive ventilation. They described a lack of dedicated funding, unstructured care pathways, equipment supply levels that do not meet need, low staff-to-patient ratios and staff shortages, and the inability to deliver quality multidisciplinary care. The need for clinical guidelines and service specifications was highlighted as requisite for reducing variation in clinical care. Systemic factors influence the needs-based provision of non-invasive ventilation for people with neuromuscular disorders. Development of clinical guidelines for Australia and New Zealand, dedicated funding for respiratory services for people with neuromuscular disorders, and specialist clinician training are important for equitable and high quality non-invasive ventilation care.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
270-274Subventions
Organisme : Muscular Dystrophy Association of New Zealand
Informations de copyright
© 2023 The Authors. Medical Journal of Australia published by John Wiley & Sons Australia, Ltd on behalf of AMPCo Pty Ltd.
Références
Theadom A, Rodrigues M, Poke G, et al; the MDPrev Research Group. A nationwide, population-based prevalence study of genetic muscle disorders. Neuroepidemiology 2019; 52: 128-135.
Muscular Dystrophy Foundation Australia. What is MD? 2020. https://mdaustralia.org.au/what-is-md (viewed Dec 2022).
Berella E, Banfi P, Paneroni M, et al. Early initiation of night-time NIV in an outpatient setting: A randomized non-inferiority study in ALS patients. Eur J Phy Rehabil Med 2017; 53: 892-899.
Sharma R, Wolfe L. Use of non-invasive ventilation in neuromuscular disease. Curr Sleep Med Rep 2017; 3: 290-298.
Gonzalez Calzada N, Prats Soro E, Mateu Gomez L, et al. Factors predicting survival in amyotrophic lateral sclerosis patients on non-invasive ventilation. Amyotroph Lateral Scler Frontotemporal Degener 2016; 17: 337-342.
Simonds AK. Home mechanical ventilation: an overview. Ann Am Thorac 2016; 13: 2035-2044.
Voulgaris A, Antoniadou M, Agrafiotis M, Steiropoulos P. Respiratory involvement in patients with neuromuscular diseases: a narrative review. Pulm Med 2019: 2734054.
Garner DJ, Berlowitz DJ, Douglas J, et al. Home mechanical ventilation in Australia and New Zealand. Eur Respir 2013; 41: 39-45.
Neill A, Ingham TR, Perry MA, et al. Noninvasive ventilation in New Zealand: a national prevalence survey. Intern Med J 2022; https://doi.org/10.1111/imj.15960 [online ahead of print].
Bach JR, Gonçalves MR, Hon A, et al. Changing trends in the management of end-stage neuromuscular respiratory muscle failure: recommendations of an international consensus. Am J Phys Med Rehabil 2013; 92: 267-277.
Ngandu H, Gale N, Hopkinson JB. Experiences of noninvasive ventilation in adults with hypercapnic respiratory failure: a review of evidence. Eur Respir Rev 2016; 25: 451-471.
MacIntyre EJ, Asadi L, Mckim DA, Bagshaw SMJ. Clinical outcomes associated with home mechanical ventilation: a systematic review. Can Respir 2016; 2016: 6547180.
Agency for Clinical Innovation (New South Wales). Non-invasive ventilation for patients with acute respiratory failure. Clinical practice guide. Feb 2023. https://aci.health.nsw.gov.au/networks/icnsw/clinicians/non-invasive-ventilation (viewed July 2023).
Chang A, Marsh S, Smith N, Neill A. Long-term community non-invasive ventilation. Intern Med J 2010; 40: 764-771.
Perry M, Jones B, Jenkins M, et al. Health system constraints affecting the experience of non-invasive ventilation provision of people with neuromuscular disorders in New Zealand. Int J Environ Res Public Health 2023; 20: 4758.
All Party Parliament Group for Muscular Dystrophy (UK). Access to specialist neuromuscular care: the Walton report. 5 Jan 2012. https://issuu.com/musculardystrophycampaign/docs/walton_report (viewed Mar 2018).
Thomas DR. A general inductive approach for analyzing qualitative evaluation data. Am J Eval 2006; 27: 237-246.
Ministry of Health (New Zealand). Equity of health care for Māori: a framework. Updated 14 Nov 2021. https://www.health.govt.nz/publication/equity-health-care-maori-framework (viewed May 2023).
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349-357.
Braun V, Clarke V. Thematic analysis: a practical guide. London: SAGE Publications, 2021.
Bloom SR, Kuhlthau K, Van Cleave J, et al. Health care transition for youth with special health care needs. J Adolesc Health 2012; 51: 213-219.
Lloyd-Owen S, Donaldson G, Ambrosino N, et al. Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. Eur Respir 2005; 25: 1025-1031.
Ndoro S. Effective multidisciplinary working: the key to high-quality care. Br J Nurs 2014; 23: 724-727.
Paganoni S, Nicholson K, Leigh F, et al. Developing multidisciplinary clinics for neuromuscular care and research. Muscle Nerve 2017; 56: 848-858.
Lane H, Martin JM, Haines T. Healthcare decision making: allied health and equity. In: Martin JM, editor. Mental health policy, practice, and service accessibility in contemporary society. Hershey (PA): IGI Global, 2019; pp. 41-56. https://www.irma-international.org/chapter/healthcare-decision-making/213558 (viewed June 2023).
Francke AL, Smit MC, de Veer AJE, Mistiaen P. Factors influencing the implementation of clinical guidelines for health care professionals: a systematic meta-review. BMC Med Inform Decis Mak 2008: 8: 38.