The impact of a regionally based translational cancer research collaborative in Australia using the FAIT methodology.

BACKGROUND: Translating research, achieving impact, and assessing impact are important aspirations for all research collaboratives but can prove challenging. The Hunter Cancer Research Alliance (HCRA) was funded from 2014 to 2021 to enhance capacity and productivity in cancer research in a regional centre in Australia. This study aimed to assess the impact and benefit of the HCRA to help inform future research investments of this type. METHOD: The Framework to Assess the Impact from Translational health research (FAIT) was selected as the preferred methodology. FAIT incorporates three validated methodologies for assessing impact: 1) Modified Payback; 2) Economic Analysis; and 3) Narrative overview and case studies. All three FAIT methods are underpinned by a Program Logic Model. Data were collected from HCRA and the University of Newcastle administrative records, directly from HCRA members, and website searches. RESULTS: In addition to advancing knowledge and providing capacity building support to members via grants, fellowships, scholarships, training, events and targeted translation support, key impacts of HCRA-member research teams included: (i) the establishment of a regional biobank that has distributed over 13,600 samples and became largely self-sustaining; (ii) conservatively leveraging $43.8 M (s.a.$20.5 M - $160.5 M) in funding and support from the initial $9.7 M investment; (iii) contributing to clinical practice guidelines and securing a patent for identification of stem cells for endometrial cell regeneration; (iv) shifting the treatment paradigm for all tumour types that rely on nerve cell innervation, (v) development and implementation of the world's first real-time patient treatment verification system (Watchdog); (vi) inventing the effective 'EAT' psychological intervention to improve nutrition and outcomes in people experiencing radiotherapy for head and neck cancer; (vi) developing effective interventions to reduce smoking rates among priority groups, currently being rolled out to disadvantaged populations in NSW; and (vii) establishing a Consumer Advisory Panel and Consumer Engagement Committee to increase consumer involvement in research. CONCLUSION: Using FAIT methodology, we have demonstrated the significant impact and downstream benefits that can be achieved by the provision of infrastructure-type funding to regional and rural research collaboratives to help address inequities in research activity and health outcomes and demonstrates a positive return on investment.

Adapting to a global pandemic through live virtual delivery of a cancer collaborative trial group conference: The TROG 2020 experience.

INTRODUCTION: The global COVID-19 pandemic forced the cancellation of the TROG 2020 face to face Annual Scientific Meeting (ASM). It was instead delivered as a live virtual meeting with 6 days of planning. Here, we report the participants' experience of this live virtual meeting. METHOD: Participants were invited to complete custom-developed, pre- and post-meeting surveys to assess their expectations of and satisfaction with the live virtual format. Speakers and moderators were also invited to complete a custom-developed satisfaction survey. The working parties of TROG (head/neck/skin, genitourinary, breast and lung) were also sampled. RESULTS: In total, 188/273 (69%) registered participants logged in to the live virtual meeting. The online engagement for each of the oral sessions ranged from 53 to 66%. There were 102 and 57 responders to the online pre- and post-meeting surveys, respectively. The majority of pre-meeting responders indicated a significant level of employer support to attend the virtual meeting. Post-meeting satisfaction exceeded pre-meeting expectations ('very much' and 'quite a bit'; 86% vs. 54%; P < 0.0001). The majority indicated they would be 'quite a bit' or 'very much' interested in future live virtual meetings. CONCLUSION: The TROG 2020 ASM was conducted as a live virtual meeting. Participant satisfaction and future interest in a live virtual meeting was high, indicating this is a viable platform for other CCTG's faced with the decision to deliver virtual content at times of global public health threats.

Marrow adipose tissue in adolescent girls with obesity.

BACKGROUND: Marrow adipose tissue (MAT) is increasingly recognized as an active and dynamic endocrine organ that responds to changes in nutrition and environmental milieu. Compared to normal weight controls, adolescent girls with anorexia nervosa have higher MAT content, which is associated with impaired skeletal integrity, but data are limited regarding MAT content in adolescents with obesity and how this interacts with bone endpoints. OBJECTIVE: To evaluate (i) MAT content in adolescents with obesity compared to normal-weight controls, (ii) the association of MAT with bone endpoints, and (iii) whether these associations of MAT are affected by body weight. METHODS: We assessed MAT, bone endpoints, and body composition in 60 adolescent girls 14-21 years old: 45 with obesity (OB) and 15 normal-weight controls (NW-C). We used (i) DXA to assess areal bone mineral density (aBMD) at the lumbar spine and total hip, and total body fat and lean mass, (ii) proton magnetic resonance spectroscopy (1H-MRS) to assess MAT at the 4th lumbar vertebra and femur, and MRI to assess visceral (VAT) and subcutaneous adipose tissue (SAT), (iii) high resolution peripheral quantitative CT (HR-pQCT) to assess volumetric BMD (vBMD), (iv) individual trabeculae segmentation to evaluate trabecular bone (plate-rod morphology), and (v) finite element analysis to assess stiffness (a strength estimate) at the distal radius and tibia. RESULTS: Groups did not differ for age or height. Weight, BMI, and areal BMD Z-scores at all sites were higher in the OB group (p<0.0001). MAT was lower in OB at the femoral diaphysis (p= <0.0001) and the lumbar spine (p=0.0039). For the whole group, MAT at the lumbar spine and femoral diaphysis was inversely associated with BMI, total fat mass, lean mass, and VAT. Even after controlling for body weight, independent inverse associations were observed of femoral diaphyseal and lumbar MAT with total tibial vBMD, and of lumbar MAT with radial trabecular vBMD. CONCLUSION: Adolescent girls with obesity have lower MAT than normal-weight controls despite having an excess of total body fat. These findings confirm that MAT is regulated uniquely from other adipose depots in obesity. MAT was inversely associated with vBMD, emphasizing an inverse relationship between MAT and bone even in adolescent girls with obesity.

Attitudes to Alzheimer's disease testing of Australian general practice patients: a cross-sectional questionnaire-based study.

OBJECTIVE: In view of proposed screening for presymptomatic Alzheimer's disease (AD) with advanced imaging, and blood and cerebral spinal fluid analysis, we aimed to establish levels, and associations, of acceptance of AD testing modalities by general practice patients. METHODS: A cross-sectional questionnaire-based study of consecutive patients (aged 50 years and over) of general practices of an Australian practice-based research network was used. The questionnaire elicited demographic data and attitudes to screening for other diseases and included the screening acceptance domain of the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC) instrument. This assesses receptivity to modalities of testing for AD: short questionnaire, blood test, cerebral imaging, and annual physician examination. Reflecting speculation of possible future AD diagnostic methods, an item regarding testing cerebral spinal fluid was also included. Associations of PRISM-PC scores were analyzed with multiple linear regression. RESULTS: Of 489 participants (response rate 87%), 66.2% would like to know if they had AD. Participants were more accepting of testing modalities that were noninvasive or familiar (questionnaire, physician's examination, and blood test) as opposed to cerebral imaging or lumbar puncture. Attitudes to AD testing are influenced by a positive attitude to disease screening in general. Patients with a self-perceived higher risk of AD were less accepting of testing, as were participants with an educational level of junior high school (10 school years) or less. CONCLUSIONS: This study demonstrates that a majority of patients would like to know if they have AD. Acceptability of testing modalities, however, varies. Noninvasive, familiar methods are more acceptable.

Biobank classification in an Australian setting.

In 2011, Watson and Barnes proposed a schema for classifying biobanks into 3 groups (mono-, oligo-, and poly-user), primarily based upon biospecimen access policies. We used results from a recent comprehensive survey of cancer biobanks in New South Wales, Australia to assess the applicability of this biobank classification schema in an Australian setting. Cancer biobanks were identified using publically available data, and by consulting with research managers. A comprehensive survey was developed and administered through a face-to-face setting. Data were analyzed using Microsoft Excel™ 2010 and IBM SPSS Statistics™ version 21.0. The cancer biobank cohort (n=23) represented 5 mono-user biobanks, 7 oligo-user biobanks, and 11 poly-user biobanks, and was analyzed as two groups (mono-/oligo- versus poly-user biobanks). Poly-user biobanks employed significantly more full-time equivalent staff, and were significantly more likely to have a website, share staff between biobanks, access governance support, utilize quality control measures, be aware of biobanking best practice documents, and offer staff training. Mono-/oligo-user biobanks were significantly more likely to seek advice from other biobanks. Our results further delineate a biobank classification system that is primarily based on access policy, and demonstrate its relevance in an Australian setting.

Patients' responses to transient ischaemic attack symptoms: a cross-sectional questionnaire study in Australian general practices.

BACKGROUND: Consensus guidelines for transient ischaemic attack (TIA) recommend urgent investigation and management, but delays in management occur and are attributable to patient and health system factors. AIM: To establish general practice patients' anticipated responses to TIA symptoms, and associations of appropriate responses. DESIGN AND SETTING: A cross-sectional questionnaire-based study in Australian general practices. METHOD: Consecutive patients attending general practices completed questionnaires that contained the Stroke Action Test (STAT) adapted for TIA about demographic, health system use, and stroke risk factors. STAT elicits appropriate or inappropriate anticipated responses to 28 symptom complexes. Anticipated actions in-hours and out-of-hours were elicited. Associations of independent variables with adapted-STAT scores were tested with multiple linear regression. RESULTS: There were 854 participants (response rate 76.9%). Urgent healthcare-seeking responses to transient neurological symptoms ranged from 96.8% for right-sided weakness with dysphasia to 59.1% for sudden dizziness. Associations of higher adapted-STAT scores were older age, Indigenous status, previous after-hours services use, self-perception of health as poor, and familiarity with a stroke public awareness campaign. A personal or family history of stroke, smoking status, and time of event (in-hours/out-of-hours) were not significantly associated with adapted-STAT scores. CONCLUSION: Most general practice attendees expressed intentions to seek health care urgently for most symptoms suggestive of TIA, with highest levels of urgency observed in high stroke-risk scenarios. Intentions were not associated with a number of major risk factors for TIA and might be improved by further educational interventions, either targeted or at population level.

An evaluation of the prescription of opioids for chronic nonmalignant pain by Australian general practitioners.

OBJECTIVE: Our objective was to evaluate the quality of opioid analgesia prescribing in chronic nonmalignant pain (CNMP) by general practitioners (GPs, family physicians). DESIGN: An anonymous, cross-sectional questionnaire-based survey. SETTING: The setting was five Australian divisions of general practice (geographically based associations of GPs). METHODS: A questionnaire was mailed to all division members. Outcome measures were adherence to individual recommendations of locally derived CNMP practice guidelines. RESULTS: We received 404 responses (response rate 23.3%). In the previous fortnight, GPs prescribed long-term continuous opioids for CNMP for a median of 4 and a mean of 7.1 (±8.7) patients with CNMP. Guideline concordance (GLC) was poor, with no GP always compliant with all guideline items, and only 31% GPs usually employing most items. GLC was highest for the avoidance of high dosages or fast-acting formulations. It was lowest for strategies minimizing individual and public health harms, such as the initiation of opioids on a time-limited trial basis, use of contracts, and the preclusion or management of aberrant behaviors. GLC was positively associated with relevant training or qualifications, registration with the Australian Prescription Drug Monitoring Programme, being an opioid substitution therapy prescriber, and female gender. CONCLUSIONS: In this study, long-term opioids were frequently initiated for CNMP without a quality use-of-medicine approach. Potential sequelae are inadequate treatment of pain and escalating opioid-related harms. These data suggest a need for improved resourcing and training in opioid management across pain and addictions.

Rectal biopsies obtained with jumbo biopsy forceps in the evaluation of Hirschsprung disease.

BACKGROUND AND AIM: Refractory constipation is an extremely common problem in infants and children. The diagnostic suspicion of Hirschsprung disease often arises in this clinical setting. Diagnosing Hirschsprung disease can be difficult; however, excluding the diagnosis is much easier, only requiring the demonstration of ganglion cells in the distal rectum. The most common method for obtaining tissue from the rectum involves a blind suction biopsy. This technique has been complicated by serious adverse events, equipment malfunction, and inadequate specimens. Our goal was to evaluate the adequacy of specimens obtained with a flexible endoscope and jumbo biopsy forceps to rule out Hirschsprung disease in the child outside the newborn period. PATIENTS AND METHODS: We retrospectively reviewed 668 rectal biopsies taken during 167 endoscopies on 156 patients being evaluated for Hirschsprung disease from 2001 to 2008 at the Baystate Medical Center Children's Hospital. Four biopsies were taken from each patient approximately 2.5 cm from the anal verge. Biopsies were obtained using a flexible endoscope and jumbo biopsy forceps. During the first 6 years the Olympus FB-50U-1 large cup fenestrated biopsy forceps was used. During the last 2 years the Boston Scientific Radial Jaw 4 Jumbo biopsy forceps was used instead. RESULTS: The Boston Scientific Radial Jaw 4 Jumbo biopsy forceps yielded adequate specimens 93% of the time, which surpassed most published results of other techniques. There were no complications reported. CONCLUSIONS: Obtaining rectal biopsies with a flexible endoscope and jumbo biopsy forceps is a safe and effective means to rule out the diagnosis of Hirschsprung disease in children.

New-onset psychiatric disorders in individuals with autism.

A follow-up study to at least the age of 21 years of 135 individuals with an autism spectrum disorder diagnosed in childhood and an IQ of over 30 was conducted. The study is distinctive in its large size, low attrition rate and use of systematic interviews to obtain clinical information. Questionnaires completed by caregivers asked about the development of new psychiatric disorders. For the 39 individuals with a possible new disorder, a detailed psychiatric assessment was undertaken through parental interview. Of all participants, 16 percent developed a definite new psychiatric disorder. A further 6 percent developed a possible new disorder. Five individuals developed an obsessive-compulsive disorder and/or catatonia; eight an affective disorder with marked obsessional features; three complex affective disorders; four more straightforward affective disorders; one a bipolar disorder; and one an acute anxiety state complicated by alcohol excess. There was no case of schizophrenia.