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Healthcare
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Improving Care for People Living with ALS/MND
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Improving Care for People Living with ALS/MND

A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Nursing".

Deadline for manuscript submissions: 30 June 2026 | Viewed by 1752

Special Issue Editor

Dr. Anne Vaughan Hogden

E-Mail Website
Guest Editor
School of Population Health, University of New South Wales, Sydney, NSW 2052, Australia
Interests: motor neurone disease; amyotropic lateral sclerosis; decision-making; patient decision support tools; co-design; safety and quality of care

Special Issue Information

Dear Colleagues,

1) Introduction, including scientific background and highlighting the importance of this research area.
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a multisystem and fatal neurodegenerative condition that continues to elude a cure or effective disease-delaying treatments. Until these are achieved, the focus remains on improving the quality of care for people living with ALS/MND and supporting their family carers. Evidence-based best practise includes care delivered by specialised multidisciplinary ALS/MND clinics. However, many people living with ALS/MND are unable to access specialised ALS/MND services, and, as a rare disease, many health professionals are unfamiliar with the often-rapid disease trajectory and the urgency of receiving care that meets patients’ needs.

We are pleased to invite you to contribute to this Special Issue on ALS/MND care.

2) Aim of the Special Issue and how the subject relates to the journal scope. Please make sure that your Special Issue is in the scope of the journal. You can check the scope in the Journal menu: Aims and Scope. Additionally, the scope should not be too broad or too narrow.
This Special Issue aims to highlight the recent research on developments in care for people living with ALS/MND, regardless of where they receive their care. Topics may include (but are by no means limited to) symptom management; palliative care; perspectives of people with lived experience of ALS/MND; models of care; service delivery; e-health; service co-design; and equitable access to care. We invite contributors to submit manuscripts that broaden our understanding of ALS/MND care and demonstrate how the delivery of care can be improved.

3) Suggested themes and article types for submissions
In this Special Issue, original research articles and reviews are welcome. Articles may include (but are not limited to) the following:

  • Original research;
  • Literature reviews, including systematic, scoping, narrative, and rapid reviews;
  • Perspectives papers.

We look forward to receiving your contributions.

Dr. Anne Vaughan Hogden
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Healthcare is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2700 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • evidence-based practise
  • patient-centred care
  • patient-centred decision making
  • multidisciplinary care
  • interprofessional care
  • regional and rural ALS/MND care
  • e-health
  • virtual care
  • co-design
  • equity of access

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Further information on MDPI's Special Issue policies can be found here.

Published Papers (3 papers)

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Research

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20 pages, 1776 KiB  
Article
Connecting Care Closer to Home: Evaluation of a Regional Motor Neurone Disease Multidisciplinary Clinic
by Karen Hutchinson, Georgia Fisher, Anna Schutz, Sally Carr, Sophie Heard, Molly Reynolds, Nicholas Goodwin and Anne Hogden
Healthcare 2025, 13(7), 801; https://doi.org/10.3390/healthcare13070801 - 2 Apr 2025
Viewed by 682
Abstract
The optimal approach to managing motor neurone disease (MND) is through integrated, person-centred care (PCC), complemented by access to specialised MND multidisciplinary clinics (MDCs). However, in Australia, MND care is fragmented and uncoordinated. Objectives: To evaluate participant experiences of the implementation of a [...] Read more.
The optimal approach to managing motor neurone disease (MND) is through integrated, person-centred care (PCC), complemented by access to specialised MND multidisciplinary clinics (MDCs). However, in Australia, MND care is fragmented and uncoordinated. Objectives: To evaluate participant experiences of the implementation of a new regional MND MDC in New South Wales, Australia, and explore factors influencing its implementation. Methods: A qualitative evaluation was conducted. We used semi-structured interviews with people living with MND (plwMND) (n = 4), family carers (n = 2), healthcare providers (n = 6), and social care providers (n = 2). First, deductive analysis using the Theoretical Domains Framework and COM-B model was applied to identify factors influencing the adoption and sustainability of the MDC. Then, an inductive thematic analysis identified the impact of the MND MDC from participant perspectives. Results: The MND MDC was found to be appropriate and acceptable for providing equitable access to PCC MND care that was ‘closer to home’. The three main themes from the inductive analysis indicated that: 1. Implementing it was a ‘good idea’ [the MND-MDC]; 2. It ‘flushes out’ local service gaps and/or challenges; and 3. It results in positive outcomes. Key facilitators to implementation identified from the deductive analysis were staff expertise, strong trusting relationships with all clinic participants, and the belief that the MND MDC optimised care. Barriers to implementation included a lack of staff remuneration, organisational boundaries, limited representation of specialities, and anticipated difficulties in coordinating care with existing services. Conclusions: The commitment to providing equitable access to an MND MDC in a regional area is crucial to optimise care for plwMND and their families. However, overcoming complex organisational boundaries, creating local solutions, and building strong partnerships are key challenges to securing ongoing financial support and local health district ‘buy-in’ to support sustainability. Full article
(This article belongs to the Special Issue Improving Care for People Living with ALS/MND)
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12 pages, 1178 KiB  
Perspective
‘Finally, in Hands I Can Trust’: Perspectives on Trust in Motor Neurone Disease Care
by Dominika Lisiecka, Neil Dyson, Keith Malpress, Anthea Smith, Ellen McNeice, Peter Shack and Karen Hutchinson
Healthcare 2025, 13(16), 1994; https://doi.org/10.3390/healthcare13161994 - 14 Aug 2025
Abstract
Integrated multidisciplinary care is recognised as essential for people living with motor neurone disease (PlwMND) and their families. The values underpinning integrated care, such as person-centredness, respect, empowerment, and co-production, are central to delivering meaningful and comprehensive support. Trust is an essential yet [...] Read more.
Integrated multidisciplinary care is recognised as essential for people living with motor neurone disease (PlwMND) and their families. The values underpinning integrated care, such as person-centredness, respect, empowerment, and co-production, are central to delivering meaningful and comprehensive support. Trust is an essential yet often overlooked element of effective person- and family-centred integrated care, particularly for PlwMND. While specialist multidisciplinary MND clinics represent the benchmark for evidence-based care, many PlwMND and their families depend significantly on local and community-based support services to maintain quality of life. Trust directly influences their engagement with these services and the continuity of care provided. Trust enables understanding of personal priorities and how they change as the disease progresses, ultimately allowing for person-centred care to happen. Trust is necessary to enable service co-production, which is a strong value of integrated care. Research highlights seven key domains of support essential to PlwMND and their carers: practical, social, informational, psychological, physical, emotional, and spiritual. Effective integrated care requires strong relationships built upon trust, shared decision-making, respect for individuality, and clear communication. Furthermore, due to the rapidly progressive nature of MND, care priorities and perceived symptom burdens may shift significantly over short periods, making flexible, temporally sensitive approaches critical. A dynamic, inclusive model of decision-making that fosters autonomy within and regular co-review of needs is recommended. This perspective paper examines how person- and family-centred integrated care is currently being delivered, what is working well, and how these practices can be further strengthened to enhance the care experiences of PlwMND, their families, and the health and social care providers involved. This paper builds on both theoretical knowledge and clinical experience to offer our perspective on the critical role of trust in co-producing integrated care for PlwMND. It brings together the voices of clinicians and researchers, alongside those with lived experience of MND. We propose a diagram of care that embeds the core values of integrated, person-centred care within the specific context of MND. Our aim is to enhance collaborative practices, strengthen cross-sector partnerships, and ultimately improve the care experiences for professionals, PlwMND, and their families. Full article
(This article belongs to the Special Issue Improving Care for People Living with ALS/MND)
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13 pages, 1177 KiB  
Perspective
Banking on My Voice: Life with Motor Neurone Disease
by Ian Barry and Sarah El-Wahsh
Healthcare 2025, 13(14), 1770; https://doi.org/10.3390/healthcare13141770 - 21 Jul 2025
Viewed by 429
Abstract
This perspective paper presents a first-person account of life with motor neurone disease (MND). Through the lens of lived experience, it explores the complex and often prolonged diagnostic journey, shaped in part by the protective grip of denial. This paper then delves into [...] Read more.
This perspective paper presents a first-person account of life with motor neurone disease (MND). Through the lens of lived experience, it explores the complex and often prolonged diagnostic journey, shaped in part by the protective grip of denial. This paper then delves into the emotional impact of MND on the individual and their close relationships, capturing the strain on identity and family dynamics. It also highlights the vital role of the multidisciplinary team in providing support throughout the journey. A central focus of the paper is the personal journey of voice banking. It reflects on the restorative experience of reclaiming a pre-disease voice through tools such as ElevenLabsTM. This narrative underscores the critical importance of early intervention and timely access to voice banking, positioning voice not only as a tool for communication but also as a powerful anchor of identity, dignity, and agency. The paper concludes by highlighting key systemic gaps in MND care. It calls for earlier referral to speech pathology, earlier access to voice banking, access to psychological support from the time of diagnosis, and better integration between research and clinical care. Full article
(This article belongs to the Special Issue Improving Care for People Living with ALS/MND)
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