Improving telehealth for persons with multiple sclerosis - a cross-sectional study from the Australian MS longitudinal study.

PURPOSE: The COVID-19 pandemic impacted healthcare delivery, especially for people with chronic disease. We investigated telehealth use by persons with multiple sclerosis (MS) during the COVID-19 pandemic and their suggestions to improve their telehealth experience. METHODS: From persons with MS, we collected data on demographic, disease-related and social determinants of health, telehealth use during the COVID-19 pandemic, satisfaction with telehealth, and suggestions to improve telehealth. We conducted univariate log-binomial regression to establish factors associated with telehealth use versus no use, summarised experiences and suggestions for improvement with frequency tables, and conducted thematic analysis on free-text suggestions for improvement. RESULTS: Of 1,485 participants, 69.8% used telehealth during the first phase of the COVID-19 pandemic. Only small differences were observed for demographic, disease and social health determinants between telehealth users and non-users. Most participants who used telehealth had good or very good experiences (new providers:74.3%; existing providers:78.6%). The most common suggestion for improving telehealth experience was "guidance on preparing for telehealth sessions." Participants also wanted expansion in telehealth availability and utility. CONCLUSION: Persons with MS in Australia commonly used telehealth during the COVID-19 pandemic and were generally satisfied with their experiences. Implementing the suggested improvements will help optimise telehealth for persons with MS. REGISTRATION: N/A.

Australians with multiple sclerosis (MS) had good or very good experiences of telehealth during the first year of the pandemic.Telehealth is a useful consultation tool for many rehabilitation professions and may be appropriate for use across the whole MS population.To improve the delivery of rehabilitation through telehealth, provision of better guidance on preparing for telehealth consultations and provision of digital equipment to monitor their health is wanted by persons with MS.Rehabilitation professionals and researchers should take opportunities to identify if proficiency in the English language and cultural background may influence experiences with telehealth in persons with MS.

The effect of the Australian bushfires and the COVID-19 pandemic on health behaviours in people with multiple sclerosis.

BACKGROUND: Crises and disasters disproportionally impact people with chronic health conditions such as multiple sclerosis (MS). OBJECTIVE: To assess the impact of the COVID-19 pandemic and the Australian Black Summer Bushfires on health behaviours in people with MS. METHODS: People with MS, carers, healthcare and advocacy professionals were recruited online between May-July 2020 for an online survey and telephone interviews. RESULTS: Survey items relating to health behaviours were completed by 113 people with MS, and 18 people with MS, 4 MS advocates, 5 healthcare professionals, and 2 carers were interviewed. The bushfires affected 34.5% and the pandemic affected 74.3% of survey participants with MS. The pandemic and bushfires caused a decrease in physical activity in 53.8% and 55.3% of participants respectively, as well as increases in unhealthy eating (43.6% and 24.3% respectively) and alcohol consumption (35.4% and 10.5% respectively), and a decrease in typical sleeping patterns (40.5% and 39.5% respectively). Conversely, 27.5% of participants reported an increase in physical activity during the pandemic. Interview data detailed the circumstances and motivations for changes in health behaviours, as well as consequences, including reduced mobility, fitness, mood disturbances, and weight gain. CONCLUSION: There is a need to increase support and health promotion for people with MS to maintain or initiate positive health behaviours, especially in times of adversity.

Self-reported cognitive function in a large international cohort of people with multiple sclerosis: associations with lifestyle and other factors.

BACKGROUND AND PURPOSE: We aimed to estimate the prevalence of perceived cognitive impairment (PCI) and explore its associations with lifestyle and disease characteristics in a large international cohort of people with multiple sclerosis (MS). METHODS: This study was a cross-sectional analysis. Participants rated their cognitive function over the preceding 4 weeks using four questions in a subscale within the Multiple Sclerosis Quality of Life questionnaire (MSQOL-54). These questions assessed perceived concentration, attention and memory by the patient and family/friends. Four definitions of PCI were derived, ranging from lowest to highest specificity. Associations with PCI were assessed by log-binomial regression. RESULTS: The prevalence of PCI in our sample ranged from 41.0% (95% confidence interval, 39.0-43.0) using the least-specific definition to 11.6% (95% confidence interval, 10.3-12.9) using the most specific definition. A number of factors were associated with PCI, increasing in magnitude as the definition specificity increased, including positive associations for smoking and body mass index, whereas physical activity, dietary quality and use of vitamin D/omega-3 supplements were inversely associated with PCI. CONCLUSIONS: Our study reports associations between healthy lifestyle behaviours and PCI in people with MS. Although reverse causality is a potential explanation for our findings, previous studies have shown comparable associations with healthy lifestyle and MS onset and progression. Subject to external validation, these results suggest benefits realized from a healthy lifestyle in people with MS.

Skills, expertise and role of Australian emergency clinicians in caring for people with advanced cancer.

OBJECTIVES: To explore the views of Australian emergency department (ED) clinicians about their skills, role and expertise in caring for people with advanced cancer. METHODS: A cross-sectional electronic survey of doctors and nurses working in Australian EDs was undertaken. Comparisons were made by demographics and whether respondents had received palliative care education. RESULTS: The sample comprised 444 doctors (response rate 13.5%), the majority Fellows (emergency medicine specialists) of the Australasian College for Emergency Medicine, and 237 nurses, from all states, territories and regions (metropolitan and regional). A minority (n=123, 20.6%) felt that the ED was not an appropriate place for patients with advanced cancer to present for acute care, while almost two-thirds (n=397, 64.8%) found caring for such patients rewarding, particularly nurses and those who had received palliative care education; very few (n=40, 6.5%) reported feeling uncomfortable talking to the families of dying patients. A minority (n=129, 21.0%) felt that it was not appropriate for junior medical staff to assess these patients, nurses much more than doctors (42.9% vs 8.5%, p<0.001). Over half (n=338, 55.1%) felt sufficiently skilled in managing pain for people with advanced cancer, with Fellows, more experienced doctors, and those who had received palliative care education more likely to feel skilled. CONCLUSIONS: ED clinicians in Australia, particularly those who have received palliative care education, feel comfortable and adequately skilled in managing people with advanced cancer presenting to EDs, and most find it rewarding. The importance of palliative care education to emergency clinicians' training should be recognised.

Potential donor families' experiences of organ and tissue donation-related communication, processes and outcome.

We aimed to describe the experiences of families of potential organ and tissue donors eligible for donation after circulatory death or brain death. Forty-nine family members of potential donors from four Melbourne hospitals were interviewed to assess their experiences of communication, processes and the outcomes of donation. Interviews were recorded, transcribed verbatim and analysed thematically. Families expressed a range of perspectives on themes of communication, hospital processes and care, the processes of consent and donation and reflected on decisions and outcomes. They expressed satisfaction overall with communication when receiving bad news, discussing death and donation. Honest and frank communication and being kept up-to-date and prepared for potential outcomes were important aspects for families, especially those of post circulatory death donors. Participants reported high levels of trust in healthcare professionals and satisfaction with the level of care received. Many donor families indicated the process was lengthy and stressful, but not significantly enough to adversely affect their satisfaction with the outcome. Both the decision itself and knowing others' lives had been saved provided them with consolation. No consenting families, and only some non-consenting families, regretted their decisions. Many expressed they would benefit from a follow-up opportunity to ask questions and clarify possible misunderstandings. Overall, while experiences varied, Australian families valued frank communication, trusted health professionals, were satisfied with the care their family member received and with donation processes, despite some apparent difficulties. Family satisfaction, infrequently assessed, is an important outcome and these findings may assist education for Australian organ donation professionals.

Understanding Australian families' organ donation decisions.

Numbers of deceased organ donors in Australia have increased, but rates of consent to donation remain at around 60%. Increasing family consent is a key target for the Australian Organ and Tissue Authority. Reasons for donation decisions have been reported in the international literature, but little is known of reasons for Australian families' decisions. Potential organ donors in four Melbourne hospitals were identified and 49 participants from 40 families (23 consenting and 17 non-consenting) were interviewed to understand reasons for consent decisions. Themes for consent to organ donation included that: donation was consistent with the deceased's explicit wishes or known values, the desire to help others or self-including themes of altruism, pragmatism, preventing others from being in the same position, consolation received from donation and aspects of the donation conversation and care that led families to believe donation was right for them. Themes for non-consent included: lack of knowledge of wishes; social, cultural and religious beliefs; factors related to the donation process and family exhaustion; and conversation factors where negative events influenced decisions. While reasons for consent were similar to those described in international literature, reasons for non-consent differed in that there was little emphasis on lack of trust of the medical profession, concerns regarding level of care provided to the potential donor, preserving the deceased's body, fears of body invasion or organ allocation fairness.

Factors relating to consent for organ donation: prospective data on potential organ donors.

BACKGROUND: Obtaining family consent to organ donation is a significant obstacle to improving further Australian deceased organ donation rates. Currently, neither the consent rates for donors eligible to donate after circulatory death, nor factors that influence decision to decline or consent to donation in general are known in Australia. METHODS: This study at four university teaching hospitals in Melbourne, Victoria, examined consecutive patients where organ donation was discussed with the family RESULTS: A total of 123 cases were identified; the family consent rate was 52.8%, and 34.1% proceeded to donation. Consent to donation was related to potential donor factors such as country of birth, cultural background in Australia, a non-religious or Christian background and registration on the Australian Organ Donor Register. Family-related factors included being English speaking and having knowledge of the deceased's wishes about organ donation. Family of donation after circulatory death-eligible donors were less likely to consent to donation than the family of donation after brain death-eligible donors, although not reaching statistical significance. Among consented potential donors, those eligible for donation after brain death and with a shorter length of stay were more likely to proceed to donating organs for transplantation. CONCLUSION: Despite a small sample size, these findings describe current consent and donation rates and associated factors and may assist in improving conversations about organ donation.

Care of the dying cancer patient in the emergency department: findings from a National survey of Australian emergency department clinicians.

BACKGROUND: Patients with cancer are presenting to emergency departments (ED) for end-of-life care with increasing frequency. Little is known about this experience for patients and ED clinicians in Australia. AIMS: To assess the barriers and enablers regarding end-of-life care for cancer patients as perceived by Australian ED clinicians. METHODS: There were 4501 Australian ED clinicians invited through their professional colleges to complete an online survey, using multiple-choice and free-text responses. RESULTS: A total of 681 ED clinicians responded, most (84.2%) felt comfortable providing care to the dying and found it to be rewarding (70.9%). Although 83.8% found caring for the dying a reasonable demand on their role as clinician, 83.8% also agreed that the ED is not the right place to die. Respondents demonstrated a wide range of views regarding caring for this patient group in ED through free-text responses. In addition, 64.5% reported that futile treatment is frequently provided in the ED; the main reasons reported were that limitations of care were not clearly documented, or discussed with the patient or their family. Almost all (94.6%) agreed that advance care plans assist in caring for dying patients in the ED. CONCLUSIONS: Our findings provide important new insights into a growing area of care for ED. Barriers and enablers to optimal care of the dying patient in ED were identified, and especially the reported high occurrence of futile care, likely a result of these barriers, is detrimental to both optimal patient care and allocation of valuable healthcare resources.

Ideal care and the realities of practice: interdisciplinary relationships in the management of advanced cancer patients in Australian emergency departments.

PURPOSE: Over the course of their illness, a person with cancer is likely to see a number of different healthcare professionals, including those in the emergency department (ED). There is limited research examining the interaction and communication between the involved healthcare professionals when such a patient presents to the ED. This study aimed to explore the views and experiences of interdisciplinary interactions of healthcare professionals caring for patients with advanced cancer who present to the ED. METHODS: Focus groups and semistructured interviews were conducted with clinical staff working in ED, oncology and community and hospital-based palliative care services. Interviews and focus groups were recorded and transcribed verbatim. Thematic analysis was undertaken by three researchers independently. These themes were then discussed by the wider team and consensus reached on themes and subthemes. RESULTS: Eighty-three healthcare professionals participated in focus groups, and 11 were interviewed. The over-arching theme to emerge was one of a conflict between ideal care and the realities of practice, particularly arising where clinicians from different services were required to work together to provide care. This idea was further understood through a series of subthemes including communication, decision-making and understanding of other services. CONCLUSIONS: Participants articulated agreed upon ideals of optimal care for advanced cancer patients across all three services, however there was frequently discord between these ideals and the actual care provided. Service demands and the day-to-day stressors of practice appeared to influence people's actions and engender conflict.

Donation after cardiac death: are Australian emergency clinicians supportive?

To improve organ donation processes and outcomes, many Australian hospitals have introduced donation after cardiac death (DCD) following the 2010 publication of the National Protocol for DCD. As emergency clinicians play a significant role in identifying potential DCD donors, it is critical to assess their support and knowledge. Although many support DCD, most are unaware of the protocol or procedures regarding DCD. Education is needed and desired by many emergency clinicians.