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.

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.

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.

The feasibility of an online educational lifestyle program for people with multiple sclerosis: A qualitative analysis of participant semi-structured interviews.

Objective: To explore the feasibility of a randomised controlled trial of a multiple sclerosis online course (MSOC) via qualitative analysis of participant semi-structured interviews. Methods: The MSOC was developed in two arms: intervention arm which contained evidence-based lifestyle modification recommendations, and standard-care arm which delivered information from MS websites reflecting standard advice. Participants were recruited via online advertisements, completed a baseline questionnaire, and randomised. Seven modules were delivered over six weeks. Course completers were invited to participate in semi-structured interviews. Within a qualitative paradigm, interviews were analysed using reflexive thematic analysis. Results: Fourteen of the 17 course completers were interviewed: 86% (12/14) female; mean age 50 years; residing in Australia, New Zealand, and the USA, predominantly had relapsing-remitting MS, mean time from diagnosis 9.5 years, and patient-determined disease steps disability assessment distributed evenly across all three categories. Four themes were identified: 1) "Hearing our stories" (hope for the future, feeling represented, exploring the journey of others with MS, learning from diversity, and wanting to connect with others); 2) "Taking the plunge" (not wanting to be first, feelings of nervousness or reluctance and feeling confronted); 3) "The accessibility and safety of being online" (ease of access, going at your own pace, making it work and not letting others down); and 4) "unpacking the course" (ease of navigation, visuals, understandability, and length and timing). Conclusion: Participants felt represented, found the course accessible and content was easy to understand. These experiences provide important insights and considerations for this digital health intervention.

Characteristics of mHealth app use in an international sample of people with multiple sclerosis.

The management of multiple sclerosis (MS) has progressed significantly with the emergence of mHealth technologies. Uptake of mHealth apps amongst people with MS, and clinical and demographic characteristics of mHealth adopters is unknown outside North America. Participants of the HOLISM study were queried about their mHealth apps use. We summarize mHealth app usage, and clinical and demographic characteristics of mHealth app adopters using descriptive statistics. Overall, 3.1% of respondents reported using an mHealth app, most of whom were located in Australasia and North America. This study provides insight regarding mHealth app usage within a large international cohort of people with MS.

Mastery is associated with greater physical and mental health-related quality of life in two international cohorts of people with multiple sclerosis.

BACKGROUND: Mastery is the sense of being in control of one's life and improvement in mastery may help to enhance quality of life. Little research has explored mastery in people with multiple sclerosis (MS), including its association with quality of life. OBJECTIVE: To explore the association between mastery and health-related quality of life (HRQOL) in people with MS. METHOD: Two cross-sectional cohorts of adults with MS (n = 1401 and n = 573), recruited through convenience sampling, completed an online survey which measured mastery using the Pearlin Mastery Scale, physical and mental HRQOL via physical and mental health composite scores of MSQOL-54, along with other covariates, including demographics, clinical characteristics and lifestyle factors. Linear regression assessed associations between mastery and physical HRQOL adjusting for age, sex, education, disability and depression, and between mastery and mental HRQOL adjusting for age, sex, education, disability and clinically significant fatigue. RESULTS: Greater mastery score was associated with higher physical and mental HRQOL in both cohorts, such that a one-point increase in the PMS was associated with an increase of 2.9 (95% Confidence Interval (CI): 2.6, 3.1) and 2.8 points (95% CI: 2.4, 3.2) in the means of physical HRQOL score in the first and second cohorts respectively, and a 2.9-point (95% CI: 2.7, 3.1) and 3.1-point (95% CI: 2.7, 3.4) increase in the means of mental HRQOL score. A dose-dependent relationship was demonstrated between a quartile categorical mastery variable and both physical and mental HRQOL in both cohorts. Mastery was associated with all subscores of both physical and mental HRQOL. CONCLUSIONS: Greater mastery is associated with better physical and mental quality of life. Efforts to improve the sense of self control and agency of people with MS may have benefits for their quality of life, even despite clinical features of the illness.

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.