The Impact of Monetary Incentives on Delay Discounting Within a Year-Long Physical Activity Intervention.

BACKGROUND: Delay discounting is the depreciation in a reward's perceived value as a function of the time until receipt. Monetary incentive programs that provide rewards contingent on meeting daily physical activity (PA) goals may change participants' delay discounting preferences. PURPOSE: Determine if monetary incentives provided in close temporal proximity to meeting PA goals changed delay discounting, and if such changes mediated intervention effects. METHODS: Inactive adults (n = 512) wore accelerometers during a 12-month intervention where they received proximal monetary incentives for meeting daily moderate-to-vigorous PA (MVPA) goals or delayed incentives for study participation. Delay discount rate and average MVPA were assessed at baseline, end of intervention, and a 24-month follow-up. Using structural equation modeling, we tested effects of proximal versus delayed rewards on delay discounting and whether any changes mediated intervention effects on MVPA. PA self-efficacy was also evaluated as a potential mediator, and both self-efficacy and delay discounting were assessed as potential moderators of intervention effects. RESULTS: Proximal rewards significantly increased participants' delay discounting (ß = 0.238, confidence interval [CI]: -0.078, 0.380), indicating greater sensitivity to reinforcement timing. This change did not mediate incentive-associated increases in MVPA at the end of the 12-month intervention (ß = -0.016, CI: -0.053, 0.019) or at a 24-month follow-up (ß = -0.020, CI: -0.059, 0.018). Moderation effects were not found. CONCLUSIONS: Incentive-induced increases in delay discounting did not deleteriously impact MVPA. This finding may help assuage concerns about using monetary incentives for PA promotion, but further research regarding the consequences of changes in delay discounting is warranted.

This study examined the effects of providing proximal monetary incentives for meeting daily exercise goals on people's tendency to value immediate versus delayed rewards. Inactive adults (n = 512) participated in a year-long program where they wore an accelerometer each day and received either (i) small monetary rewards in close temporal proximity to instances of meeting daily exercise goals or (ii) larger rewards at 2-month intervals for ongoing participation. Those receiving proximal incentives showed an increased preference for immediate rewards, yet this reported change did not compromise long-term physical activity gains. In a comparison analysis, we found that proximal monetary incentives were not associated with changes in exercise self-efficacy. Overall, the findings suggest that monetary incentives for exercise do not negatively impact people's activity levels, though more research is needed to fully understand the implications of changes in reward timing preferences.

The moderating impact of neighborhood walkability on mHealth interventions to increase moderate to vigorous physical activity for insufficiently active adults in a randomized trial.

BACKGROUND: Ecological models suggest that interventions targeting specific behaviors are most effective when supported by the environment. This study prospectively examined the interactions between neighborhood walkability and an mHealth intervention in a large-scale, adequately powered trial to increase moderate-to-vigorous physical activity (MVPA). METHODS: Healthy, insufficiently active adults (N = 512) were recruited purposefully from census block groups ranked on walkability (high/low) and socioeconomic status (SES, high/low). Participants were block-randomized in groups of four to WalkIT Arizona, a 12-month, 2 × 2 factorial trial evaluating adaptive versus static goal setting and immediate versus delayed financial reinforcement delivered via text messages. Participants wore ActiGraph GT9X accelerometers daily for one year. After recruitment, a walkability index was calculated uniquely for every participant using a 500-m street network buffer. Generalized linear mixed-effects hurdle models tested for interactions between walkability, intervention components, and phase (baseline vs. intervention) on: (1) likelihood of any (versus no) MVPA and (2) daily MVPA minutes, after adjusting for accelerometer wear time, neighborhood SES, and calendar month. Neighborhood walkability was probed at 5th, 25th, 50th, 75th, and 95th percentiles to explore the full range of effects. RESULTS: Adaptive goal setting was more effective in increasing the likelihood of any MVPA and daily MVPA minutes, especially in lower walkable neighborhoods, while the magnitude of intervention effect declined as walkability increased. Immediate reinforcement showed a greater increase in any and daily MVPA compared to delayed reinforcement, especially relatively greater in higher walkable neighborhoods. CONCLUSIONS: Results partially supported the synergy hypotheses between neighborhood walkability and PA interventions and suggest the potential of tailoring interventions to individuals' neighborhood characteristics. TRIAL REGISTRATION: Preregistered at clinicaltrials.gov (NCT02717663).

Male pediatric, adolescent, and young adult reproductive survivorship.

As pediatric, adolescent, and young adult cancer survival rates increase, emphasis is placed on reducing late effects, including reproductive complications and potential impact to fertility. Male survivors are at risk of abnormalities in sperm, hormone deficiencies, and sexual dysfunction. This can impact one's progression into puberty and ability to have a biological child and impacts quality of life following treatment. Access to reproductive care is important and requires patient assessment and appropriate referral to reproductive specialists. This review addresses reproductive complications associated with therapy, standard-of-care testing, and therapeutic interventions. The psychologic impact on psychosexual functioning is also addressed.

Durable remissions achieved with reinfusion of CD19-directed CAR-T despite failure to induce or maintain B-cell aplasia and single-center experience with reinfusion of tisagenlecleucel.

CD19-directed chimeric antigen receptor T lymphocytes (CAR-T) have led to durable remissions in children with refractory and/or multiply relapsed B-lymphoblastic leukemia. For those who relapse or lose B-cell aplasia post CAR-T, the role of CAR-T reinfusion is unclear. We report two cases of durable remission with tisagenlecleucel reinfusion despite failure to achieve or maintain B-cell aplasia, and compare these cases to six additional children who received multiple tisagenlecleucel infusions at our institution. Our experience suggests that reinfusion is safe and may be a definitive therapy for a small subset of patients. Reinfusion can also reintroduce remission and/or B-cell aplasia, allowing for subsequent therapies.

Opportunities for primary health care: a qualitative study of perinatal health and wellbeing during bushfire crises.

BACKGROUND: During the summer of 2019/2020, Australia experienced a catastrophic wildfire season that affected nearly 80% of Australians either directly or indirectly. The impacts of climate crisis on perinatal health have only recently begun to receive attention. The objective of this study was to understand experiences of perinatal women during the bushfire and smoke events of 2019-2020 regarding health, health care, and public health messaging. METHODS: Semistructured interviews were conducted by phone or web conferencing platforms with 43 participants living in the south-east of Australia who were either pregnant or who had recently had a baby during the 2019/2020 fires. RESULTS: The health impacts on participants of the fires, associated smoke, and evacuations for some, were both physical and psychological. Many participants sought information regarding how to protect their own health and that of their unborn/recently born children, but reported this difficult to find. CONCLUSIONS: Pregnant women and new mothers exposed to bushfire events are a risk group for adverse physical and psychological outcomes. At the time of the 2019/2020 Australian bushfires, exposed women could not easily access evidence-based information to mitigate this risk. Family practitioners are well placed to provide pregnant women and new mothers with this sought-after information, but they need to be prepared well in advance of future similar events.

'A human face and voice': transgender patient-educator and medical student perspectives on gender-diversity teaching.

BACKGROUND: Transgender and gender diverse (TGD) people face many obstacles in accessing health care, including discrimination, institutional bias, and clinician knowledge deficits. We developed a clinical skills and education module on gender-affirming care for pre-clinical medical students, in collaboration with a TGD-led civil society organisation. The module consisted of an educational session followed by preceptor-facilitated small group tutorials, led by TGD patient-educators (n = 22) who used their lived experience to explore medical history-taking and broader issues related to TGD healthcare with students (n = 199). This study aimed to explore the views of students and TGD patient-educators on the structure, delivery and impact of the module. METHODS: Analysis of responses of TGD patient-educators and students to the module (2020 and 2021), in post-intervention surveys using open-ended questions for TGD patient-educators (18 responses from 22 educators) and free text comments as part of a quantitative survey for medical students (89 responses). RESULTS: Responses from students and patient-educators to the session were highly positive. Students and patient-educators emphasised that the teaching session succeeded through elevating the centrality of shared experience and creating a safe space for learning and teaching. Safety was experienced by patient-educators through the recognition of their own expertise in a medical environment, while students reported a non-judgemental teaching space which allowed them to explore and redress recognised limitations in knowledge and skill. Patient-educators described their motivation to teach as being driven by a sense of responsibility to their community. Preceptor attitudes may function as a barrier to the effectiveness of this teaching, and further attention should be paid to supporting the education of clinical facilitators in TGD health. CONCLUSION: The experiences of TGD patient-educators and medical students in this study suggest that this model of teaching could serve as a transferable template for TGD health and the inclusion of other historically marginalised groups in medical education.

A framework for involving coproduction partners in research about young people with type 1 diabetes.

BACKGROUND: Involvement of end-users in research can enhance its quality, relevance, credibility and legitimacy; however, the processes through which these changes occur are unclear. Our aim was to explore a coproduction research team's experiences of their involvement in research about young people with type 1 diabetes mellitus (T1DM). METHODS: Semi-structured interviews conducted with two young people with T1DM, two parents, one diabetes educator, one endocrinologist-scientist and one research-engineer explored experiences of coproduction research and its impact on both the research and the participants. Drawing on grounded theory, we undertook inductive analysis and storyline mapping to develop a theorized framework of mechanisms supporting the process of coproduction in T1DM research with young people. FINDINGS: The framework involving coproduction partners in research about young people with type 1 diabetes centres on the unique expertize that different team members bring to the research and describes conditions that enable expert contributions through the enactment of a variety of expert roles. The framework also describes outcomes-the impact of the expert contributions on both the research and the team members involved. CONCLUSION: The findings of this small exploratory study provide a sound foundation to develop further understanding about structures and processes that are integral for the success of coproduction research teams. The framework may provide a guide for researchers planning to incorporate coproduction, on elements that are important for this model of research to succeed. It may also inform coproduction impact assessment research and be used for hypothesis testing and expansion in future studies.

Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. METHODS: Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. RESULTS: Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. CONCLUSION: People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. PATIENT AND PUBLIC INVOLVEMENT: Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.

COVID-19 and mental health in Australia - a scoping review.

BACKGROUND: The COVID-19 outbreak has spread to almost every country around the world and caused more than 3 million deaths. The pandemic has triggered enormous disruption in people's daily lives with profound impacts globally. This has also been the case in Australia, despite the country's comparative low mortality and physical morbidity due to the virus. This scoping review aims to provide a broad summary of the research activity focused on mental health during the first 10 months of the pandemic in Australia. RESULTS: A search of the Australian literature was conducted between August-November 2020 to capture published scientific papers, online reports and pre-prints, as well as gaps in research activities. The search identified 228 unique records in total. Twelve general population and 30 subpopulation group studies were included in the review. CONCLUSIONS: Few studies were able to confidently report changes in mental health driven by the COVID-19 context (at the population or sub-group level) due to a lack of pre-COVID comparative data and non-representative sampling. Never-the-less, in aggregate, the findings show an increase in poor mental health over the early period of 2020. Results suggest that young people, those with pre-existing mental health conditions, and the financially disadvantaged, experienced greater declines in mental health. The need for rapid research appears to have left some groups under-researched (e.g. Culturally and Linguistically Diverse populations and Indigenous peoples were not studied), and some research methods under-employed (e.g. there was a lack of qualitative and mixed-methods studies). There is a need for further reviews as the follow-up results of longitudinal studies emerge and understandings of the impact of the pandemic are refined.

Treatment of posttransplant lymphoproliferative disorder with poor prognostic features in children and young adults: Short-course EPOCH regimens are safe and effective.

No guidelines exist for which intensive chemotherapy regimen is best in pediatric or young adult patients with high-risk posttransplant lymphoproliferative disorder (PTLD). We retrospectively reviewed patients with PTLD who received interval-compressed short-course etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin (SC-EPOCH) regimens at our institution. Eight patients were included with median age of 12 years. All patients achieved a complete response with a manageable toxicity profile. Two patients developed second, clonally unrelated, EBV-positive PTLD and one patient had recurrence at 6 months off therapy. No graft rejection occurred during therapy. All eight patients are alive with median follow-up of 29 months.

Use of CD19-directed CAR T-Cell Therapy in an Infant With Refractory Acute Lymphoblastic Leukemia.

Infants with KMT2A-rearranged acute lymphoblastic leukemia (ALL) have historically poor outcomes despite maximal intensification of chemotherapy. Chimeric antigen receptor (CAR) T-cell therapy has revolutionized our approach to pediatric patients with relapsed/refractory ALL. Unfortunately, infants were excluded from early CAR T-cell trials due to concerns regarding the feasibility of T-cell collection and expansion. Here, we report the use of tisagenlecleucel in an infant with chemotherapy-refractory KMT2A-rearranged ALL. While CAR T-cell therapy was not curative for this patient, collection and expansion of T-cells proved feasible despite prior chemotherapy, he achieved minimal residual disease negative remission with excellent quality of life, and it facilitated a delay in hematopoietic stem cell transplantation.

Hyperdiploid Precursor B-acute Lymphoblastic Leukemia Presenting as a Cavernous Sinus Mass in a 4-Year-old Male.

Risk stratification and appropriate treatment selection for children with precursor B-acute lymphoblastic leukemia (B-ALL) have improved outcomes. We report the case of a 4-year-old male with a lymphomatous cavernous sinus mass, a previously undescribed presentation of newly diagnosed hyperdiploid B-ALL. Few case reports in the literature describe lymphomatous involvement in this region, but none are associated with pediatric B-ALL. This case presented unique treatment and risk assignment challenges given the intracranial location of this tumor and proximity to the central nervous system.

'Traversing difficult terrain'. Advance care planning in residential aged care through multidisciplinary case conferences: A qualitative interview study exploring the experiences of families, staff and health professionals.

BACKGROUND: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. AIM: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. DESIGN: A qualitative study (February-July 2019) using semi-structured interviews. SETTING: Two residential aged care facilities in one Australian rural town. PARTICIPANTS: Fifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. RESULTS: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The 'conversation' was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. CONCLUSION: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

Lessons for the global primary care response to COVID-19: a rapid review of evidence from past epidemics.

BACKGROUND: COVID-19 is the fifth and most significant infectious disease epidemic this century. Primary health care providers, which include those working in primary care and public health roles, have critical responsibilities in the management of health emergencies. OBJECTIVE: To synthesize accounts of primary care lessons learnt from past epidemics and their relevance to COVID-19. METHODS: We conducted a review of lessons learnt from previous infectious disease epidemics for primary care, and their relevance to COVID-19. We searched PubMed/MEDLINE, PROQUEST and Google Scholar, hand-searched reference lists of included studies, and included research identified through professional contacts. RESULTS: Of 173 publications identified, 31 publications describing experiences of four epidemics in 11 countries were included. Synthesis of findings identified six key lessons: (i) improve collaboration, communication and integration between public health and primary care; (ii) strengthen the primary health care system; (iii) provide consistent, coordinated and reliable information emanating from a trusted source; (iv) define the role of primary care during pandemics; (v) protect the primary care workforce and the community and (vi) evaluate the effectiveness of interventions. CONCLUSIONS: Evidence highlights distinct challenges to integrating and supporting primary care in response to infectious disease epidemics that have persisted over time, emerging again during COVID-19. These insights provide an opportunity for strengthening, and improved preparedness, that cannot be ignored in a world where the frequency, virility and global reach of infectious disease outbreaks are increasing. It is not too soon to plan for the next pandemic, which may already be on the horizon.

Infectious disease epidemics are increasing in frequency and spread. Primary health care providers are at the forefront of community health care, and have an important role in managing health emergencies such as infectious disease epidemics. It is important to use lessons learnt from past epidemics to inform current health system responses. We examined evidence from past epidemics and identified six key lessons that have emerged in 11 countries during four previous epidemics and again during the COVID-19 pandemic. These lessons highlight the importance of integrating pandemic responses across health care disciplines, strengthening the primary health care system, defining the role of primary care during epidemics, protecting the health care workforce and the community, providing clear and consistent information and evaluating the effectiveness of health care responses. Health system weaknesses are exposed to health emergencies. Identification of these recurring lessons for primary health care provides an opportunity to definitively prepare for future infectious disease epidemics.

'They're getting a taste of our world': A qualitative study of people with multiple sclerosis' experiences of accessing health care during the COVID-19 pandemic in the Australian Capital Territory.

BACKGROUND: People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health-care providers to manage their health. OBJECTIVE: To elucidate people with MS' experiences of accessing health care during the COVID-19 pandemic in Australia. DESIGN: A qualitative study involving semi-structured interviews and thematic analysis. SETTINGS AND PARTICIPANTS: Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020. RESULTS: Participants were aware that having MS made them more vulnerable to contracting COVID-19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face-to-face consultation. Benefits of telehealth consultations included improved access, convenience and being contact-free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health-care routines. DISCUSSION AND CONCLUSION: Personal risk assessment and trust in health-care professionals are determinants of the mode through which people with MS accessed health care during the COVID-19 pandemic. Telehealth has been a valuable tool to mitigate COVID-19 transmission through enabling contact-free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers.

Funeral and interment practices of rural residents: A mixed methods study.

There are few studies on interment preferences and practices for people in remote and rural regions of developed countries. This mixed methods study in rural Australia collated data on funeral and interment practices with an ethnographic exploration of the post-death preferences of terminally-ill rural residents. In the region, between February 2015 and May 2016, 44% of decedents were cremated. Burial preferences reflected family traditions, generational connections to historic cemeteries, and the wish to instantiate belonging to people and place. Cremation provided the opportunity for ashes to be scattered at personally-significant places. Funeral planning was important for patients and family caregivers, and funerals are valued rural community rituals.

Chimeric Antigen Receptor T Cell Therapy in Patients with Multiply Relapsed or Refractory Extramedullary Leukemia.

Autologous CD19-directed chimeric antigen receptor T lymphocyte (CAR-T) therapy is an approved and effective treatment for the management of patients with refractory and multiply relapsed B cell precursor acute lymphoblastic leukemia (B-ALL). Experience using this therapy in pediatric patients with extramedullary (EM) disease is limited, in part because these patients have frequently been excluded from clinical trials owing to concerns for an increased risk of immune effector cell-associated neurotoxicity syndrome (ICANS). We infused 7 patients with refractory or multiply relapsed B-ALL who presented with isolated EM relapse with tisagenlecleucel. Six patients had isolated central nervous system (CNS) leukemia, and 1 patient had an isolated testicular relapse. An initial complete response was seen in all patients, with 5 patients remaining in CAR-T-induced remission at a median of 18 months from first infusion. Reversible ICANS was seen in 1 patient with CNS leukemia. Durable B cell aplasia occurred in 3 patients, with a median time to B cell recovery of 6.5 months in the other patients. These data suggest that CAR-T therapy has promising safety and efficacy in treating EM leukemia, although definitive conclusions are limited by the small size of the cohort and limited follow-up period.

Chimeric antigen receptor T-cell therapy in patients with neurologic comorbidities.

Chimeric antigen receptor T cells (CAR-T) are an effective and potentially durable treatment for refractory and multiply relapsed B-cell acute lymphoblastic leukemia. Neurotoxicity is frequent after CAR-T cell therapy. Mechanisms driving neurotoxicity are incompletely understood, and symptoms can range from transient and mild to severe and life-threatening. Providers have exercised caution in providing CAR-T to patients with neurological comorbidities or extramedullary disease. Here, we report three patients with prior significant neurologic morbidity who safely tolerated CAR-T cell infusion after bridging therapy with conventional chemotherapy.

Should professional interpreters be able to conscientiously object in healthcare settings?

In a globalised world, healthcare professionals will inevitably find themselves caring for patients whose first language differs from their own. Drawing on experiences in Australia, this paper examines a specific problem that can arise in medical consultations using professional interpreters: whether the moral objections of interpreters should be accommodated as conscientious objections if and when their services are required in contexts where healthcare professionals have such entitlements, most notably in relation to consultations concerning termination of pregnancy and voluntary assisted dying. We argue that existing statements of professional ethics suggest that interpreters should not be accorded such rights. The social organisation of healthcare and interpreting services in Australia may mean those who have serious objections to particular medical practices could provide their services in restricted healthcare contexts. Nevertheless, as a general rule, interpreters who have such objections should avoid working within healthcare.

'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis.

BACKGROUND: People with multiple sclerosis (MS) have varied experiences and approaches to self-management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research. METHODS: A meta-synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge-users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease. RESULTS: Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health-care sector; and work, social and family life). CONCLUSION: The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.