Search

e24127 Background: Patients with a rare cancer (RC) diagnosis face unique challenges affecting psychological wellbeing. Vast geographical distances further compound challenges in accessing RC sub-specialist expertise, clinical trials, research and non-reimbursed therapies. The Australian Rare Cancer (ARC) Portal is a novel model of care delivery that has a positive psychological impact on these patients. Methods: The ARC Portal is a national free online referral platform implemented to overcome barriers to accessing excellent care. It is funded by Omico, with support from BioGrid Australia, Rare Cancers Australia (RCA), and The WEHI Stafford Fox Rare Cancer Program (SFRCP). We have recorded 924 referrals for a diverse range of RC in early (30%) and late stages (70%). Our 162 referring clinicians derive from every Australian state and from both regional and metropolitan centres. Over 50 content experts from Australia and internationally have provided case advice. Referring clinical impact surveys and patient feedback surveys were analysed to identify psychosocial impacts of the ARC Portal. Results: Our model of care keeps patients with their primary oncologists by equipping referrers with increased expertise drawing from, on average, two to five experts. The entirely online consent process overcomes geographical barriers to enrolment, and is of particular importance in the context of the ongoing COVID-19 restrictions removing in person interaction. Provision of expertise and treatment recommendations meets informational needs and increased the patient confidence patients in their treating clinicians. Report recommendations directly altered the treatment delivered to patients in 20/48 of surveyed referrer respondents. Early stage patients are eligible for referral to guide neoadjuvant and adjuvant therapy, and those in remission for anticipatory identification of next lines of therapy. We identify appropriate access to investigator-driven research efforts to overcome financial barriers to genomic sequencing e.g. via the MoST Program funded by OMICO and the WEHI-SFRCP enabling access to molecularly-guided therapy. A lack of reimbursed therapeutic options in RC poses financial stress on patients. The ARC Portal expands patients’ treatment options via links with clinical trial networks, coordination with industry, and cross-referral to the charity, RCA, for fundraising assistance. We provide patients with the opportunity for involvement in research, which for many provides hope, either for themselves, or for others, as they can opt to provide access to biomarker and tumour specimens via the WEHI-SFRCP; the majority of patients (82.5%) have provided consent. Conclusions: The ARC Portal offers patients access to excellent rare cancer care resulting in positive impacts upon patients’ psychological wellbeing. These initial observations require more formal assessment.

e18581 Background: Rare cancers (RC) occur at incidence < 6/100,000 and accessing treatment and evidence-based care can be challenging. Australia’s geographical distance adds complexity when referring to RC sub-specialists, clinical trials or research. The Australian Rare Cancer (ARC) Portal aims to address this unmet need. Methods: The ARC Portal is a free online academic referral hub designed to facilitate rare cancer clinical care and research. Registered cancer specialists can request RC guidelines, expert advice and molecular testing/interpretation. Patient consent allows researchers access to de-identified clinical data, with optional consent for biospecimen access, for dedicated rare cancer research projects (Melbourne Health HREC/15/MH/396). Portal case reports are collated by research fellows with reference to published evidence and expert opinion to inform treating clinician decision making. Surveys are sent at 3 time points following case completion to assess the ARC Portal impact on patient management. The ARC Portal is funded by Omico, with support from BioGrid Australia, Rare Cancers Australia and the Stafford Fox Rare Cancer Program. Results: Over two years, 924 patients have been enrolled into the ARC Portal. Demographics include 73% females, 27% males, at different disease stages from initial diagnosis (23%), on relapse/ progression (48%) or with stable disease/in remission (29%). The spread of incidence of individual cancers varied from 6/100,000 to < 0.1/100,000. Primary tumour types include gynaecological (44.4%), gastrointestinal (19%), thoracic (6%), ocular (5.2%), soft tissue (3.8%), breast (3.6%), skin (3.0%), and CNS tumors (2.5%). Endocrine, head and neck, urological, and cancers of unknown primary comprised the remaining 12.5% of cases. Longer term follow up of 100 cases demonstrated ARC Portal reports impacted clinician decision making in at least 42%. This included subsequent lines of treatment, molecular testing access or clinical trial enrolment. Conclusions: The ARC Portal uses an online centralized streamlined approach to overcome challenges and inequities inherent in rare cancer care, by optimizing clinician access to RC expertise and clinical trials; and to facilitate future RC discoveries by enabling research through collection of clinical data and accessible annotated biospecimens.

Date Presented 4/20/2018 This study analyzed the knowledge, skills, and dispositions considered necessary by occupational therapy practitioners who own a private practice. A total of 162 U.S. private practitioners responded. Study results have implications for occupational therapy curricula, fieldwork placement, and continuing education. Primary Author and Speaker: Brenda Coppard Additional Authors and Speakers: Maureen Turner, Samantha Preuss, Sarah Fisher, Samuel Troia, Abigail Murphy Contributing Authors: Christine Apodaca; Yongyue Qi

Despite widespread use of genomic sequencing in research, there are gaps in our understanding of the performance and provision of genomic sequencing in clinical practice. The Melbourne Genomics Health Alliance (the Alliance), has been established to determine the feasibility, performance and impact of using genomic sequencing as a diagnostic tool. The Alliance has partnered with BioGrid Australia to enable the linkage of genomic sequencing, clinical treatment and outcome data for this project. This integrated dataset of genetic, clinical and patient sourced information will be used by the Alliance to evaluate the potential diagnostic value of genomic sequencing in routine clinical practice. This project will allow the Alliance to provide recommendations to facilitate the integration of genomic sequencing into clinical practice to enable personalised disease treatment.

PURPOSE: Pulmonary rehabilitation (PR) services often are used for people with chronic obstructive pulmonary disease (COPD). This study describes the development and evaluation of a tiered service in North Tyneside, United Kingdom, which aimed to increase access to PR without negatively affecting clinical outcomes. METHODS: Data were collected retrospectively. Subjects, identified as having COPD by their general practitioner, based on spirometry, were tiered for PR on the basis of their dyspnea score. Tier 1 (1-2 dyspnea score) patients were prescribed exercise and referred to an exercise program. Those in tier 2 (3-4 dyspnea score) were referred to a specialized "healthy living" exercise and education group run by an exercise health trainer. Those scoring 4 (tier 3) received physiotherapist-led group exercise and education classes. Those scoring 5 were seen at home by trained health care professionals. Scores in the Chronic Respiratory Diseases Questionnaire, COPD assessment test, and 6-minute walk test were recorded at baseline and immediately after rehabilitation. RESULTS: Data were available for 199 cases recruited. Four patients (2.0%) were placed into tier 1, 107 (53.8%) into tier 2, 85 (42.7%) into tier 3, and 3 (1.5%) into tier 4. Because of the small number involved, data for tiers 1 and 4 were not analyzed further. In tiers 2 and 3, there was a significant improvement in performance across all 3 outcome measures. CONCLUSIONS: Tiered PR may be an effective way of increasing access to PR services. Further prospective data are needed to evaluate the service fully with regard to patient throughput and costs.