Evaluating a fast-track service for diagnosing MND/ALS against traditional pathways

Callagher, Pauline; Mitchell, Douglas; Bennett, Wendy L; Addison-Jones, Robert

doi:10.12968/bjnn.2009.5.7.43241

Cited by 8 publications

(7 citation statements)

References 7 publications

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“…Receiving such a complex diagnosis required time for them to digest the information provided, express their feelings and ask questions. The evaluation of a fast-track diagnostic service based on principles of good practice in breaking bad news showed positive patient satisfaction regarding the communication of the diagnosis and the time taken [37]. Similarly, a qualitative study which assessed patients' perspectives on diagnosis delivery in a 2-tiered approach reported positive outcomes.…”

Section: Consultation Durationmentioning

confidence: 99%

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Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Anestis

Eccles

Fletcher

et al. 2020

Patient Education and Counseling

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Objective: Delivering a life changing diagnosis can be a distressing experience for patients and a challenging task for professionals. Diagnosis delivery can be especially difficult for individuals with neurodegenerative diseases such as motor neurone disease (MND), multiple sclerosis (MS) and Parkinson's disease (PD). This review aims to scope the literature on doctors' and patients' perspectives on diagnosis delivery for these conditions in order to enhance our understanding in this area and identify potential research gaps. Methods: A scoping review methodology was used, and data were summarised using content analysis.Results: 47 studies fulfilled the inclusion criteria. Studies showed that although patients were generally satisfied with diagnosis delivery, a considerable proportion was still dissatisfied with aspects of the consultation, especially the information and time provided and the doctor's approach. Only six studies addressed doctors' perspectives, which focused more on doctors' practice. Conclusion:There was a significant research gap in professionals' perspectives. The review also found that although basic standards of good practice were being met, a significant proportion of patients were dissatisfied with diagnosis communication. Practice Implications: Professionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.

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Section: Consultation Durationmentioning

confidence: 99%

“…However, some patients felt that there was limited potential for further information due to the poor prognosis [36] and a qualitative study highlighted that patients' receptivity to information differed dramatically [37].…”

Section: Information Provisionmentioning

confidence: 99%

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Anestis

Eccles

Fletcher

et al. 2020

Patient Education and Counseling

View full text Add to dashboard Cite

show abstract

“…24,25 However, some studies report satisfaction with disclosure. [26][27][28] Studies that focus on the use of assistive devices report satisfaction with the use of these devices. [29][30][31][32][33][34][35] Patient satisfaction with services has also been captured by defined Web-based data sets.…”

Section: Satisfaction and Dissatisfaction With Als Services: The Patimentioning

confidence: 99%

“…One possible factor for influencing outcomes and satisfaction with services could be care provided by specialized ALS centers versus general neurology care, and it is important to note that the studies that have yielded positive outcomes in multidisciplinary care sampled patients who attended specialized ALS clinics. [39][40][41][42][43][44][45] It is also of relevance that the majority of multidisciplinary clinic settings that have sought to measure patient satisfaction report high level of patient satisfaction with health care services 49,53 and/or satisfaction with respect to distinct components of care [26][27][28][29][30][31][32][33][34][35] (note 1).…”

Section: Patient Satisfactionmentioning

confidence: 99%

Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care

Foley

Timonen

Hardiman

2011

Am J Hosp Palliat Care

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People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals' conceptualization of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.

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“…The average diagnostic timeline in ALS has been shown to range between 10 months and 18 months 16,63,66,67,69. Notwithstanding the complex referral trajectory encountered by ALS patients and their families, a fast-track system for diagnosing ALS at a specialized ALS center reduced diagnostic delays when compared to general neurology diagnostic care pathways 69,70. In addition, a “red flag” tool has also been developed in the UK to facilitate timely referral to specialist services 71…”

Section: Introductionmentioning

confidence: 99%

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

Hogden¹,

Foley²,

Henderson³

et al. 2017

JMDH

141

107

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Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2–3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients’ quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered.

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Evaluating a fast-track service for diagnosing MND/ALS against traditional pathways

Cited by 8 publications

References 7 publications

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

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