What palliative care can do for motor neurone disease patients and their families

Appropriate palliative care is essential for people with motor neurone disease, a progressive and irreversible neurological condition that can have distressing symptoms in its later stages. David Oliver and Samar Aoun detail how and when the specialist palliative care team should get involved

CT Guided Cryoablation of Primary and Metastatic Lung Tumors: Low Recurrence and Complication Rates

Purpose: To assess technical feasibility, efficacy and complication rates of CT guided cryoablation of lung tumors in multiple locations. Materials and Methods: CT fluoroscopic-guided percutaneous cryoablation was performed in 277 procedures on 378 tumors (116 primary, 262 metastatic tumors) in 158 patients. Tumor and ablation volumes, location, abutting vessels \u3e3mm, recurrences, and PFT’s were reviewed for all patients. Complications were graded by the National Institutes of Health, Common Terminology of Complications and Adverse Events 4.0 (CTCAE). Results: All procedures were performed with conscious sedation. Mean FEV1 and DLCO2 were 80.2 (32-145) and 69.5 (27-110), respectively. Overall tumor and ablation median size was 2.4 cm (0.5 – 12.3 cm) and 4.6 cm (1.7-12.8), respectively. Total major complication rates were only 5.1% (14/277), however major complication rates were significantly lower in tumors ≤3 cm as opposed to ≥3cm, 2.6% (5/196) vs. 10.8% (9/83) (p\u3c0.005) No statistical significance was noted for major complications with central tumors or major vessel proximity. Recurrence rates of 6.3% (24/378) were significantly affected by tumor size (\u3c3cm or \u3e3cm) (p\u3c0.001). Recurrence rates increased for central tumors 9.5% (14/147) compared with peripheral tumors 4.3% (10/231) (p\u3c 0.05). Conclusions: CT guided percutaneous cryoablation in the lung provides a low morbidity alternative with superb efficacy. Complication rates are significantly lower for tumors \u3c3cm and total complications were low. Clinical relevance: Appropriately delivered thoracic cryoablation is affected by vessel location yet still produces low recurrence and complication rates.https://scholarlycommons.henryford.com/merf2019clinres/1020/thumbnail.jp

An assets-based approach to bereavement care

A survey of bereaved clients of four funeral providers in Australia confirms a public health model predicting that over half the group would demonstrate low risk of complicated grief, another third moderate risk, while a small minority would meet the criteria for prolonged grief disorder. The survey also shows differing patterns of need and sources of support for each of the three groups. While our findings support targeting the bereavement care provided by health services, our primary interest is in the care received by most bereaved people. Some is provided in the community through the everyday activities of healthcare professionals. Most comes from a range of people already involved in the everyday lives of those recently bereaved. We contend that the most effective way to provide bereavement care is to support these ‘everyday assets’, ensuring that their care is recognised, appreciated, and not disrupted by over-reach from professional services

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialling the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease

The role and influence of "Champions" in a community-based lifestyle risk modification programme

This article describes the training and implementation of the Waist Disposal Challenge in service clubs in Western Australia in 2009–2010. Ninety-three Champions from 52 clubs were trained to deliver educational presentations to 1100 peers and facilitate a BMI competition among 764 peers. Champions reported significant improvements in their knowledge and confidence to motivate their peers to make changes to their diet and physical activity with 82% of participants completing the BMI competition and on average 58% experiencing and sustaining a BMI reduction for 12 months. It is evident that the Champions had influenced the uptake and success of the intervention

Factors contributing to delayed diagnosis of cancer among Aboriginal people in Australia: a qualitative study.

BACKGROUND/OBJECTIVES: Delayed presentation of symptomatic cancer is associated with poorer survival. Aboriginal patients with cancer have higher rates of distant metastases at diagnosis compared with non-Aboriginal Australians. This paper examined factors contributing to delayed diagnosis of cancer among Aboriginal Australians from patient and service providers' perspectives. METHODS: In-depth, open-ended interviews were conducted in two stages (2006-2007 and 2011). Inductive thematic analysis was assisted by use of NVivo looking around delays in presentation, diagnosis and referral for cancer. PARTICIPANTS: Aboriginal patients with cancer/family members (n=30) and health service providers (n=62) were recruited from metropolitan Perth and six rural/remote regions of Western Australia. RESULTS: Three broad themes of factors were identified: (1) Contextual factors such as intergenerational impact of colonisation and racism and socioeconomic deprivation have negatively impacted on Aboriginal Australians' trust of the healthcare professionals; (2) health service-related factors included low accessibility to health services, long waiting periods, inadequate numbers of Aboriginal professionals and high staff turnover; (3) patient appraisal of symptoms and decision-making, fear of cancer and denial of symptoms were key reasons patients procrastinated in seeking help. Elements of shame, embarrassment, shyness of seeing the doctor, psychological 'fear of the whole health system', attachment to the land and 'fear of leaving home' for cancer treatment in metropolitan cities were other deterrents for Aboriginal people. Manifestation of masculinity and the belief that 'health is women's domain' emerged as a reason why Aboriginal men were reluctant to receive health checks. CONCLUSIONS: Solutions to improved Aboriginal cancer outcomes include focusing on the primary care sector encouraging general practitioners to be proactive to suspicion of symptoms with appropriate investigations to facilitate earlier diagnosis and the need to improve Aboriginal health literacy regarding cancer. Access to health services remains a critical problem affecting timely diagnosis

Product Service System Innovation in the Smart City

Product service systems (PSS) may usefully form part of the mix of innovations necessary to move society toward more sustainable futures. However, despite such potential, PSS implementation is highly uneven and limited. Drawing on an alternate socio-technical perspective of innovation, this paper provides fresh insights, on among other things the role of context in PSS innovation, to address this issue. Case study research is presented focusing on a use orientated PSS in an urban environment: the Copenhagen city bike scheme. The paper shows that PSS innovation is a situated complex process, shaped by actors and knowledge from other locales. It argues that further research is needed to investigate how actors interests shape PSS innovation. It recommends that institutional spaces should be provided in governance landscapes associated with urban environments to enable legitimate PSS concepts to co-evolve in light of locally articulated sustainability principles and priorities

Staying just one step ahead: providing care for patients with motor neurone disease

Introduction: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease(MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. Methods: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. Results: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual’s version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members).Conclusions: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs

Hospital postdischarge intervention trialled with family caregivers of older people in Western Australia: potential translation into practice

There is lack of a suitable assessment tool that can be used routinely and systematically by hospital staff to address family caregivers' (FCs') support needs. This paper describes a novel approach to identifying and addressing FCs' needs following hospital discharge of the older person receiving care. SETTING AND PARTICIPANTS: FC recruitment occurred on the patient's discharge from a tertiary hospital in Western Australia; 64 completed the study; 80% were female; mean age 63.2 years. INTERVENTION: The Further Enabling Care at Home (FECH) programme was delivered over the telephone by a specially trained nurse and included: support to facilitate understanding of the patient's discharge letter; caregiver support needs assessment and prioritisation of urgent needs; and collaborative guidance, from the nurse, regarding accessing supports. RESULTS: Sixty-four FCs completed the FECH programme. The top three support needs identified by the FCs were: knowing what to expect in the future (52%), knowing who to contact if they were concerned (52%) and practical help in the home (36%). The telephone-based outreach service worked well and was convenient for the nurse and the FCs, and saved on transport, time and money. Most of the FCs appreciated the systematic approach to identify and articulate their needs and were satisfied with the support they received, mainly navigation through the systems, problem solving, self-care strategies, explanation of illness, symptoms and medication and access to after-hours services. CONCLUSIONS: In order to guide services which may consider adopting this systematic approach to supporting FCs and integrating it into their routine practice, this evaluation of the FECH programme has described the processes implemented and highlighted the factors that hindered or facilitated these processes to engage caregivers with appropriate services in a timely manner. Positive feedback indicated that the programme was a useful addition to hospital discharge planning. TRIAL REGISTRATION NUMBER: ACTRN12614001174673; Results

Palliative care in motor neurone disease: where are we now?

Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death