Anne Hogden

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Background Patients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS. Methods An exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes. Results Decision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs. Conclusion Decision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals.

Background The aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making. Methods Thirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically. Results Respondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information. Conclusion Patient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.

A longer diagnostic interval is a risk for depression in amyotrophic lateral sclerosis

OBJECTIVE Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression. METHOD Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale-21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). RESULTS At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS-R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ²(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05. SIGNIFICANCE OF RESULTS The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers.

Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach.

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.

Disentangling quality and safety indicator data: A longitudinal, comparative study of hand hygiene compliance and accreditation outcomes in 96 Australian hospitals

Objectives The study aims are twofold. First, to investigate the suitability of hand hygiene as an indicator of accreditation outcomes and, second, to test the hypothesis that hospitals with better accreditation outcomes achieve higher hand hygiene compliance rates. Design A retrospective, longitudinal, multisite comparative survey. Setting Acute public hospitals in New South Wales, Australia. Participants 96 acute hospitals with accreditation survey results from two surveys during 2009–2012 and submitted data for more than four hand hygiene audits between 2010 and 2013. Outcomes Our primary outcome comprised observational hand hygiene compliance data from eight audits during 2010–2013. The explanatory variables in our multilevel regression model included: accreditation outcomes and scores for the infection control standard; timing of the surveys; and hospital size and activity. Results Average hand hygiene compliance rates increased from 67.7% to 80.3% during the study period (2010–2013), with 46.7% of hospitals achieving target compliance rates of 70% in audit 1, versus 92.3% in audit 8. Average hand hygiene rates at small hospitals were 7.8 percentage points (pp) higher than those at the largest hospitals (p<0.05). The association between hand hygiene rates, accreditation outcomes and infection control scores is less clear. Conclusions Our results indicate that accreditation outcomes and hand hygiene audit data are measuring different parts of the quality and safety spectrum. Understanding what is being measured when selecting indicators to assess the impact of accreditation is critical as focusing on accreditation results would discount successful hand hygiene implementation by smaller hospitals. Conversely, relying on hand hygiene results would discount the infection control related research and leadership investment by larger hospitals. Our hypothesis appears to be confounded by an accreditation programme that makes it more difficult for smaller hospitals to achieve high infection control scores.

Analysing 'big picture' policy reform mechanisms : the Australian health service safety and quality accreditation scheme

Agencies promoting national health‐care accreditation reform to improve the quality of care and safety of patients are largely working without specific blueprints that can increase the likelihood of success.

Counting the costs of accreditation in acute care: An activity-based costing approach

Objectives To assess the costs of hospital accreditation in Australia. Design Mixed methods design incorporating: stakeholder analysis; survey design and implementation; activity-based costs analysis; and expert panel review. Setting Acute care hospitals accredited by the Australian Council for Health Care Standards. Participants Six acute public hospitals across four States. Results Accreditation costs varied from 0.03% to 0.60% of total hospital operating costs per year, averaged across the 4-year accreditation cycle. Relatively higher costs were associated with the surveys years and with smaller facilities. At a national level these costs translate to

Optimizing patient autonomy in amyotrophic lateral sclerosis: inclusive decision-making in multidisciplinary care.

A36.83 million, equivalent to 0.1% of acute public hospital recurrent expenditure in the 2012 fiscal year. Conclusions This is the first time accreditation costs have been independently evaluated across a wide range of hospitals and highlights the additional cost burden for smaller facilities. A better understanding of the costs allows policymakers to assess alternative accreditation and other quality improvement strategies, and understand their impact across a range of facilities. This methodology can be adapted to assess international accreditation programmes.

Development of patient decision support tools for motor neuron disease using stakeholder consultation : a study protocol

and may impede the timing and quality of their decisions. Several interventions for ALS care, including nutrition, hydration and respiratory support, are contingent on well-timed implementation [5,6]. However, optimal timing of symptom management may be at odds with patients’ readiness to consider these complex interventions. Patients and families need time to come to terms with their changing situation before they can fully participate in decision-making. Reactions to the diagnosis can have an influence on patients’ willingness to engage with healthcare services [7] and their preferred role in decisionmaking. Desire for autonomy is an individual choice, reflecting patients’ attitudes to life, personal circumstances and healthcare experiences [7]. Patients and families are confronted by escalating degeneration and loss, over which they have no control. Autonomy over choices of symptom management and quality of life may become a way for patients to exert control over their continually changing situation [8]. Three aspects of ALS service delivery have been found to facilitate patient autonomy in decision-making: access to specialized ALS multidisciplinary care [7];