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This perspectives paper discusses patient-centered care for people living with motor neuron disease. We identify challenges and offer solutions from the patient-centered care literature for this population in frontline care, service delivery, research and health system organization. Examples from Australian and international motor neuron disease care are used to illustrate interrelated issues for practice and policy.

Developments in amyotrophic lateral sclerosis research and care delivery have created new arenas, and new dilemmas, for patients' decision making. This review explores three aspects of amyotrophic lateral sclerosis patient-centered care and decision making: patient-centered service delivery through the expanding multidisciplinary team; decision making for genetic testing and the implications of undergoing testing; and development of user-designed decision support tools to help patients and families make decisions as their choices become more complex. Until a cure is found, well-timed and effective decision making will rely on patient and family preferences to guide them through an increasingly complicated disease landscape.

Objectives: Men diagnosed with low‐risk prostate cancer are typically eligible for active surveillance of their cancer, involving monitoring for cancer progression and making judgements about the risks of prostate cancer against those of active intervention. Our study examined how risk for prostate cancer is perceived and experienced by patients undergoing active surveillance with their clinicians, how risk is communicated in clinical consultations, and the implications for treatment and care. Method: Participants were nine patients and three clinicians from a university hospital urology clinic. A staged, qualitative, multi‐method data collection approach was undertaken, comprising: observations of consultations; patient and clinician interviews; and patient surveys. The three data sets were analysed separately using thematic analysis and then integrated to give a comprehensive view of patient and clinician views. Results: Thirty data points (eight patient surveys; 10 observations of consultations between patients and clinicians; 10 patient interviews; and two clinician interviews) combined to create a detailed picture of how patients perceived and appraised risk, in three themes of "Making sense of risk", "Talking about risk" and "Responding to risk". Conclusion: Effective risk communication needs to be finely tuned and timed to individual patient's priorities and information requirements. A structured information exchange process that identifies patients' priorities, and details key moments in risk assessment, so that complexities of risk are discussed in ways that are meaningful to patients, may benefit patient care. These findings could inform the development of patient‐centric risk assessment procedures and service delivery models in prostate cancer care more broadly. [ABSTRACT FROM AUTHOR]

Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered. [ABSTRACT FROM AUTHOR]

Background: The ward round is an opportunity to plan and deliver patient-centered care. Benefits include an effective and safer clinician-patient relationship, patient empowerment, reduced anxiety and increased trust in the health care system. Factors contributing to patient involvement in ward rounds is shaped by their preferences, ability, and opportunity. Aim: To investigate ward rounds and the patient experience with them, the relationship between the patient and clinicians, and how rounds facilitate collaboration between them. Patients and methods: A multimethod study was conducted in a single Australian facility in acute medicine and rehabilitation specialties. An observational study of ward rounds in each setting was conducted with 14 patients, aged between 55 and 89 years followed by semi-structured interviews conducted with the patients observed. Descriptive and thematic analysis was undertaken. Results: One third of participants had not heard of the term ward round or could describe their purpose. Three main influencers on the patient experience of rounds were: self; the health system; and medical officers. No meaningful difference was found between patients in acute medicine and rehabilitation although all wanted to receive information from the senior medical officers. Patients more familiar with the health system were more active participants and took greater responsibility for their involvement in rounds and described higher satisfaction. Conclusion: There is a level of acceptance within the health system that patients understand what a ward round is. However, their role on the round is complex and this may only be developed through experiencing them. High system users teach themselves to navigate rounding processes to ensure their needs are met. To ensure equity in participation patients should be educated on ward rounds, what to expect and how to they can participate. [ABSTRACT FROM AUTHOR]

Purpose Quality of care in the residential aged sector has changed over the past decade. The purpose of this paper is to examine these changes from the perspectives of staff to identify factors influencing quality of residential aged care, and the role and influence of an aged care accreditation programme.Design/methodology/approach Focus groups were held with 66 aged care staff from 11 Australian aged care facilities. Data from semi-structured interviews were analysed to capture categories representing participant views.Findings Participants reported two factors stimulating change: developments in the aged care regulatory and policy framework, and rising consumer expectations. Four corresponding effects on service quality were identified: increasing complexity of resident care, renewed built environments of aged care facilities, growing focus on resident-centred care and the influence of accreditation on resident quality of life. The accreditation programme was viewed as maintaining minimum standards of quality throughout regulatory and social change, yet was considered to lack capacity of itself to explicitly promote or improve resident quality of life.Research limitations/implications For an increasingly complex aged care population, regulatory and societal change has led to a shift in service provision from institutional care models to one that is becoming more responsive to consumer expectations. The capacity of long-established and relatively static accreditation standards to better accommodate changing consumer needs comes into question.Originality/value This is the first study to examine the relationship between accreditation and residential aged care service quality from the perspectives of staff, and offers a nuanced view of “quality” in this setting. [ABSTRACT FROM AUTHOR]

Background: 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. Objective: The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care? Setting and participants: Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically. Results: Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’. Discussion: Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients' cyclic decision‐making patterns and facilitating carer inclusion in decision processes. Conclusions: The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment. [ABSTRACT FROM AUTHOR]

Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care. Participants and methods: An exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes. Results: Carers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients' decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients' independence and patients' best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care. Conclusion: Carers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge. [ABSTRACT FROM AUTHOR]