The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

BACKGROUND Relevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors. METHODS The relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18-80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability. RESULTS Results from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach's alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains. CONCLUSIONS The SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.This project was co-funded by beyondblue and Cancer Australia (Grant ID:569290). Miss Hall was funded by an Australian Postgraduate Award and was previously funded by a 2012 Asia Australia Prime Minister’s Endeavour Award. Dr Flora Tzelepis was supported by a Leukaemia Foundation of Australia and Cure Cancer Australia Foundation Post-Doctoral Research Fellowship

What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs

BACKGROUND: This study aimed to identify the most prevalent unmet needs of haematological cancer survivors. METHODS: Haematological cancer survivors aged 18–80 years at time of recruitment were selected from four Australian state cancer registries. Survivors completed the Survivor Unmet Needs Survey. The most frequently reported “high/very high” unmet needs items were identified, as well as characteristics associated with the three most prevalent “high/very high” unmet needs reported by haematological cancer survivors. RESULTS: A total of 715 eligible survivors returned a completed survey. “Dealing with feeling tired” (17%), was the most frequently endorsed “high/very high” unmet need. Seven out of the ten most frequently endorsed unmet needs related to emotional health. Higher levels of psychological distress (e.g., anxiety, depression and stress) and indicators of financial burden as a result of cancer (e.g., having used up savings and trouble meeting day-to-day expenses due to cancer) were consistently identified as characteristics associated with the three most prevalent “high/very high” unmet needs. CONCLUSIONS: A minority of haematological cancer survivors endorsed a “high/very high” unmet need on individual items. Additional emotional support may be needed by a minority of survivors. Survivors reporting high levels of psychological distress or those who experience increased financial burden as a result of their cancer diagnosis may be at risk of experiencing the most prevalent “high/very high” unmet needs identified by this study.This project was co-funded by beyondblue and Cancer Australia (Grant ID: 569290)

Interventions to prevent obesity in school-aged children 6-18 years: An update of a Cochrane systematic review and meta-analysis including studies from 2015–2021

Background Childhood obesity remains a global public health priority due to the enormous burden it generates. Recent surveillance data suggests there has been a sharp increase in the prevalence of childhood obesity during the COVID-19 pandemic. The Cochrane review of childhood obesity prevention interventions (0–18 years) updated to 2015 is the most rigorous and comprehensive review of randomised controlled trials (RCTs) on this topic. A burgeoning number of high quality studies have been published since that are yet to be synthesised. Methods An update of the Cochrane systematic review was conducted to include RCT studies in school-aged children (6-18 years) published to 30 June 2021 that assessed effectiveness on child weight (PROSPERO registration: CRD42020218928). Available cost-effectiveness and adverse effect data were extracted. Intervention effects on body mass index (BMI) were synthesised in random effects meta-analyses by setting (school, after-school program, community, home), and meta-regression examined the association of study characteristics with intervention effect. Findings Meta-analysis of 140 of 195 included studies (183,063 participants) found a very small positive effect on body mass index for school-based studies (SMD –0·03, 95%CI –0·06,–0·01; trials = 93; participants = 131,443; moderate certainty evidence) but not after-school programs, community or home-based studies. Subgroup analysis by age (6–12 years; 13–18 years) found no differential effects in any setting. Meta-regression found no associations between study characteristics (including setting, income level) and intervention effect. Ten of 53 studies assessing adverse effects reported presence of an adverse event. Insufficient data was available to draw conclusions on cost-effectiveness. Interpretation This updated synthesis of obesity prevention interventions for children aged 6–18 years, found a small beneficial impact on child BMI for school-based obesity prevention interventions. A more comprehensive assessment of interventions is required to identify mechanisms of effective interventions to inform future obesity prevention public health policy, which may be particularly salient in for COVID-19 recovery planning. Funding This research was funded by the National Health and Medical Research Council (NHMRC), Australia (Application No APP1153479)

Can a multicomponent multidisciplinary implementation package change physicians' and nurses' perceptions and practices regarding thrombolysis for acute ischemic stroke? : an exploratory analysis of a cluster-randomized trial

Background: The Thrombolysis ImPlementation in Stroke (TIPS) trial tested the effect of a multicomponent, multidisciplinary, collaborative intervention designed to increase the rates of intravenous thrombolysis via a cluster randomized controlled trial at 20 Australian hospitals (ten intervention, ten control). This sub-study investigated changes in self-reported perceptions and practices of physicians and nurses working in acute stroke care at the participating hospitals. Methods: A survey with 74 statements was administered during the pre-and post-intervention periods to staff at 19 of the 20 hospitals. An exploratory factor analysis identified the structure of the survey items and linear mixed modeling was applied to the final survey domain scores to explore the differences between groups over time. Result: The response rate was 45% for both the pre-(503 out of 1127 eligible staff from 19 hospitals) and post-intervention (414 out of 919 eligible staff from 18 hospitals) period. Four survey domains were identified: (1) hospital performance indicators, feedback, and training; (2) personal perceptions about thrombolysis evidence and implementation; (3) personal stroke skills and hospital stroke care policies; and (4) emergency and ambulance procedures. There was a significant pre-to post-intervention mean increase (0.21 95% CI 0.09; 0.34; p < 0.01) in scores relating to hospital performance indicators, feedback, and training; for the intervention hospitals compared to control hospitals. There was a corresponding increase in mean scores regarding perceptions about the thrombolysis evidence and implementation (0.21, 95% CI 0.06; 0.36; p < 0.05). Sub-group analysis indicated that the improvements were restricted to nurses' responses. Conclusion: TIPS resulted in changes in some aspects of nurses' perceptions relating to the evidence for intravenous thrombolysis and its implementation and hospital performance indicators, feedback, and training. However, there is a need to explore further strategies for influencing the views of physicians given limited statistical power in the physician sample

Ngaa-bi-nya-nhumi-nya (to test first) : piloting the feasibility of using the growth and empowerment measure with Aboriginal pregnant women who smoke

Introduction. Aboriginal pregnant women who smoke experience barriers to quitting, including challenges to social and emotional well-being, but these are infrequently quantified. Finding an appropriate measurement tool in this setting is crucial to increase knowledge for holistic smoking cessation interventions. Aims. To pilot the Growth and Empowerment Measure (GEM) with a sample of pregnant Aboriginal women who smoke. Methods. Aboriginal women participating in the step-wedge ICAN QUIT in Pregnancy pilot study completed the GEM comprised of 14-item Emotional Empowerment Scale (EES14), 12 Scenarios (12S), and K6 items at baseline, 4 weeks, and 12 weeks. Qualitative interviews with service staff were held at the end of the study to assess feasibility. Results. 15 pregnant Aboriginal women took part between November 2016 and July 2017. At 12 weeks, n=8/12 (67%) of women reported an increase in both the EES14 and 12S scores. Total 12S scores were significantly higher at 12 weeks (p=0.0186). Total K6 had a nonsignificant trend for reduction (p=0.0547). Staff reported that the length of the survey presents challenges in this setting. Conclusions. A shortened, modified GEM is recommended in this setting. We recommend the GEM to be tested in a larger study, powered to assess its associations with smoking behaviours

Prosthetics services in Uganda : a series of studies to inform the design of a low cost, but fit-for-purpose, body-powered prosthesis

The majority of people with upper limb absence (PWULA) live in lower, or middle-income countries (LMICs). However, efforts to develop improved prostheses have largely focused on electrically powered devices, sustainable deployment of which, in LMICs, is difficult. In the ‘Fit-for-purpose, affordable body-powered prostheses’ project, teams from the UK, Uganda and Jordan are developing mechanically-operated prostheses, optimised for LMICs, and establishing local methods for fabrication, fitting and evaluation. Here we first report on preliminary studies aimed at grounding the project in the reality of current prosthetics services and the experiences of people with limb absence in Uganda. Finally, we outline our ongoing work in the context of our findings. In our first two studies we reviewed current prosthetics and associated repair services. An issue which came up repeatedly was the difficulty faced by orthopaedic technologists in accessing componentry/materials. All specialised prosthetics components and materials are imported, often at a high cost. Purchasing does not appear to be well coordinated between centres, meaning potential economies of scale are not being fully exploited. Although there is supposed to be government funding for prosthetics, in practice budgets are often inadequate and a reliance on donations is common. The resource limitations mean Orthopaedic Technologists often resort to ad-hoc solutions; unsurprisingly perhaps, failures in prostheses were reported. In particular, lamination-based socket manufacture is very difficult, given the complexity (and cost) of the processes involved. Repair services are also limited, in part also due to problems accessing materials/components. Despite (or in part, as a result of) these challenges, the orthopaedic technologists are generally an extremely resourceful and multi-skilled group and there is genuine enthusiasm to see services improve. Further, there is a growth in interest and capabilities in the area of medical device innovation. In the third of our studies, we interviewed 17 PWULA and present preliminary results from the analysis of a subset of five participants. Firstly, we found that only 2 of the participants reported experience with using an upper limb prosthesis, again supporting the picture which emerged from the other studies. The findings illustrate the emergence of four key themes: a) attitude towards disability; b) barriers to prosthesis use; c) coping without a prosthesis; and d) communication with other PWULA. Although attitudes to those with limb loss varied, participants reported impacts in terms of social isolation and a mixed experience of emotions that appeared predominantly negative; barriers to prosthesis use were broader than just cost and functionality, and included a lack of training and psychological support; given that it is difficult to access an upper limb prosthesis, PWULA have found ways to perform daily life activities without relying on one; finally, most PWULA find the suggestion of communicating with other people with the same experience appealing. In our project we are addressing some of the issues found in the preliminary studies. To make socket manufacture less dependent on access to imported materials and specialised equipment, we are investigating the development of lattice-style, adjustable sockets, made from locally available materials. We are also investigating alternatives to the traditional harness-controlled, body-powered prosthetic hands. Given that clinicians have no objective means of evaluating the value of the prosthesis to their clients, we are testing the use of low-cost digital monitoring tools. We are also exploring the potential value of using mobile-phones to reduce the isolation of PWULA. Finally, we are exploring how these innovations may be translated into the Ugandan health setting

School-level factors associated with the sustainment of weekly physical activity scheduled in Australian elementary schools: an observational study

Background We aimed to: (1) identify school-level factors associated with the sustainment of weekly physical activity (PA) scheduled in elementary schools following withdrawal of effective implementation support; and (2) determine teacher’s perceived usefulness of suggested strategies for sustaining the scheduling of weekly PA. Methods A secondary exploratory analysis was employed of data from the intervention arm (n = 31 schools) of a randomised controlled trial. Self-report survey data from 134 classroom teachers in New South Wales, Australia, collected following withdrawal of initial implementation support (follow-up T1) and six-months following completion of support (follow-up T2) were used. The outcomes of sustainment of weekly overall PA and energisers (short classroom PA breaks) scheduled were measured via teachers’ completion of a daily activity logbook, with results presented as the difference in mean minutes of PA and energisers scheduled at T1 and T2. An adapted version of the Program Sustainability Assessment Tool (PSAT) was used to measure capacity for program sustainability across seven key domains at follow-up T2. Linear mixed regressions were conducted to evaluate associations between school-level sociodemographic characteristics (e.g., school size, remoteness, and type), teacher-reported school factors (i.e., seven adapted PSAT domains) and the sustainment of PA and energisers scheduled across the school week. Perceived usefulness of 14 proposed sustainability strategies was measured via the teacher survey at follow-up T2 and reported descriptively. Results No school-level factor was statistically associated with the sustainment of overall weekly PA or energisers scheduled. Teacher-reported factors in two PSAT domains – ‘strategic planning’ and ‘program evaluation’ were statistically negatively associated with the sustainment of weekly energisers scheduled (− 6.74, 95% CI: − 13.02; − 0.47, p = 0.036 and − 6.65, 95% CI: − 12.17; − 1.12, p = 0.019 respectively). The proposed support sustainability strategy – ‘provision of PA equipment packs that enable energisers or integrated lessons’ was perceived useful by the most teachers (85%). Conclusions Further research is required to explore additional contextual-specific, and end-user appropriate factors associated with schools’ sustainment of weekly PA scheduled. This will help accurately inform the development of strategies to address these determinants and support the sustainment and long-term benefits of school-based health interventions more broadly

Clinical trial recruitment of people who speak languages other than English: a Childrens Oncology Group report.

BACKGROUND: Persons who speak languages other than English are underrepresented in clinical trials, likely in part because of inadequate multilevel resources. We conducted a survey of institutions affiliated with the Childrens Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services. METHODS: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak languages other than English to COG trials. Descriptive statistics were used to summarize responses; responses were compared by institution size and type as well as respondent role. RESULTS: The survey was sent to 230 institutions, and the response rate was 60% (n = 139). In total, 60% (n = 83) of those respondents had access to short-form consent forms. Full consent form translation was required at 50% of institutions, and 12% of institutional review boards restricted use of centrally translated consent forms. Forty-six percent (n = 64) of institutions reported insufficient funding to support translation costs; 19% (n = 26) had access to no-cost translation services. Forty-four percent (n = 61) were required to use in-person interpreters for consent discussions; the most frequently cited barrier (56%) to obtaining consent was lack of available in-person interpreters. Forty-seven percent (n = 65) reported that recruiting persons who speak languages other than English to clinical trials was somewhat or very difficult. CONCLUSIONS: Institutions affiliated with COG face resource-specific challenges that impede recruitment of participants who speak languages other than English for clinical trials. These findings indicate an urgent need to identify strategies aimed at reducing recruitment barriers to ensure equitable access to clinical trials