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Abstract Background The Australian Capital Territory and South East New South Wales branch of BreastScreen Australia (BreastScreen ACT&SENSW) performs over 20,000 screening mammograms annually. This study describes the outcome of surgical biopsies of the breast performed as a result of a borderline lesion being identified after screening mammography and subsequent workup. A secondary aim was to identify any parameters, such as a family history of breast cancer, or radiological findings that may indicate which borderline lesions are likely to be upgraded to malignancy after surgery. Methods From a period of just over eight years, all patients of BreastScreen ACT&SENSW who were diagnosed with a borderline breast lesion were identified. These women had undergone needle biopsy in Breastscreen ACT&SENSW and either atypical ductal hyperplasia (ADH), flat epithelial atypia (FEA), atypical lobular hyperplasia (ALH), radial scar/complex sclerosing lesion, papillary lesion, mucocoele-like lesion (MLL) or lobular carcinoma in situ (LCIS) was found. Final outcomes for each type of borderline lesion after referral for surgical biopsy were recorded and analysed. Results of the surgical biopsy were compared to the type of needle biopsy and its result, radiological findings and family history status. Results Of the 94 surgical biopsies performed due to the presence of a borderline breast lesion, 20% showed benign pathology, 55% remained as borderline lesions, 17% showed non-invasive malignancy and 7% showed invasive malignancy. VALCS biopsy was the most common needle biopsy method used to identify the lesions in this study (76%). Malignant outcomes resulted from 24% of the surgical biopsies, with the most common malignant lesion being non-comedo ductal carcinoma in situ (DCIS). The most common borderline lesion for which women underwent surgical biopsy was ADH (38%). Of these women, 22% were confirmed as ADH on surgical biopsy and 47% with a malignancy. Conclusions Further research is required to determine whether characteristics of the mammographic lesion (particularly calcification patterns), the area targeted for biopsy and number of core samples retrieved, can indicate a closer correlation with eventual pathology. This study identified no findings in the diagnostic assessment that could exclude women with borderline lesions from surgical biopsy.

Introduction: In 1948, the indirect ophthalmoscope revealed full intra-ocular retinoblastoma, documented on paper with coloured pencils. At SickKids, eCancerCare RB (eCC RB ) digital drawings and timeline have facilitated patient care, education, and research., Methods: Each child's eCC RB timeline shows treatments and dates. The Swimmer RB tool presents eCC RB data for research with time "0" start of intervention. Any tumour treatment after the intervention indicates recurrence; no cancer treatments indicate complete response. To further quantify the impact of retinoblastoma on child/family, we arbitrarily assigned a "consequence" score to each standard treatment (i.e., focal = 1, intra-arterial chemotherapy = 3, enucleation last eye = 30). Retrospective control eCC RB patients were matched to study participants by similar "propensity" scores before time "0." Postintervention scores indicated effectiveness., Results: eCC RB included 700 patients with retinoblastoma treated between 2001 and 2023 at SickKids. Swimmer RB facilitated comparing eCC RB patients treated with single- versus triple-drug intra-arterial chemotherapy. In the phase 1 Chemoplaque Clinical Trial, Swimmer RB analysis compared number of treatments before and after the Chemoplaque. Consequence scores quantitating negative outcomes will be refined by quality-of-life studies including those with lived experience. DEPICT HEALTH (DEPICT) on the cloud-hosted technology will soon replace eCC RB (now-outdated technology), offering digital retinoblastoma care to the world., Discussion: eCC RB (only in SickKids) is the time-tested prototype for DEPICT on the cloud. DEPICT brings digital retinal drawings, timeline, research, and clinical consultation to full view for families as partners in retinoblastoma care. DEPICT will be offered through the International Retinoblastoma Consortium to any site caring for children with retinoblastoma., (Copyright © 2024. Published by Elsevier Inc.)

Introduction Retinoblastoma treatment and follow-up is complex and varies between patients. Pathways of care can enhance quality of care, patient outcomes, safety, satisfaction, and resource optimization. Developing a pathway of care for retinoblastoma was identified as a top research priority by the retinoblastoma community. This study aimed to co-design and pilot a pathway of care called the "Retinoblastoma Journey Map" tailored for caregivers of newly diagnosed children with retinoblastoma. Methods A working group of patients, health professionals and researchers used human-centred design to ideate, prototype and refine the Retinoblastoma Journey Map. Caregivers of affected children were recruited to use and evaluate the Map. Mixed-methods data was collected on feasibility, acceptability, usability and perceived impact on communication, self-efficacy, anxiety, depression, and the quality of physician-patient interaction. Results The Retinoblastoma Journey Map consisted of an illustrated roadmap with 25 child-friendly stickers covering clinical treatment, medical education and milestones. Quantitative analysis revealed that the Map was feasible, acceptable, and usable; however, no significant effect on communication, self-efficacy, anxiety, depression or quality of physician-patient interaction was observed. Qualitative analysis identified 6 themes: Primary Use, Challenges, Impact, Limitations, Feasibility, Acceptability and Usability, and Unmet Needs. Conclusion A pathway of care for retinoblastoma, co-designed by researchers, health professionals and patients, was usable, acceptable, and feasible by caregivers of children with retinoblastoma. While significant effects on communication and physician-patient interaction were not observed, 'legacy building' - documentation of the pathway of care by families for later education of their child - emerged as an unanticipated yet important use of the Retinoblastoma Journey Map., (The Author(s). Published by S. Karger AG, Basel.)

Objective: The primary aim of this study was to identify the frequency of death, metastasis, enucleation, and use of external beam radiation therapy (EBRT) among retinoblastoma patients. The secondary aim was to determine whether any events were associated with suboptimal clinical management to identify areas for clinical care improvement., Methods: Patients diagnosed with retinoblastoma between January 1, 2000, and December 31, 2015, at The Hospital for Sick Children were included. Medical records of eligible patients underwent a comprehensive 2-part review. First, a chart review collected diagnostic details, treatment course, and occurrence of 4 events: death, metastasis, use of EBRT, and enucleation. Next, events were reviewed in detail, and a multidisciplinary committee reached consensus on cases managed suboptimally., Results: The study included 209 patients (292 eyes). There were 8 deaths, 11 metastases, 177 enucleations (143 primary, 34 secondary), and 8 uses of EBRT. Thirteen patients were reviewed by the multidisciplinary committee, which confirmed that 5 of these patients had events associated with suboptimal clinical management. Three patients developed metastases leading to death (misdiagnosis and mismanagement of trilateral retinoblastoma [1], parental refusal of enucleation [1], and inaccurate histopathology after primary enucleation [1]). One patient developed extraocular extension related to scleral invasion following aggressive focal therapy. One patient underwent secondary enucleation for a Group B eye related to mismanagement of a treatment complication., Discussion: Deaths, metastases, and enucleations with documented instances of suboptimal care highlighted a need to enhance medical team and patient communication, histopathology interpretation, laser treatment guidelines, and trilateral retinoblastoma management. Routine clinical audit of retinoblastoma management can identify areas for clinical practice change., (Copyright © 2021 Canadian Ophthalmological Society. Published by Elsevier Inc. All rights reserved.)

While it is recognized that research priorities should reflect and integrate the perspectives and needs of patients along with those of health professionals and researchers, it remains challenging to actualize such priorities into tangible research projects. Targeted dissemination is required to catalyze research on these priorities. To create awareness of and inspire action toward actualizing the top 10 retinoblastoma research priorities in Canada, Canadian Retinoblastoma Research Advisory Board (CRRAB) members developed a wide range of dissemination tools and processes. These resources, co-produced with patients, were instrumental to CRRAB sharing the top 10 priorities internationally to mobilize action toward solving them., (Copyright © 2022 Longwoods Publishing.)

Peer-to-peer recruitment efforts are important in generating interest and participation of patients as partners in research but difficult to sustain when face-to-face interactions are limited. The Retinoblastoma Research and You! booklet, co-developed by patients, researchers and health professionals, serves as a guide for patient engagement in research while retaining an element of personalization. The Retinoblastoma Research and You! booklet was developed through two virtual workshops to iterate and finalize the booklet design and content. The booklet outlines how individual patients' lived experiences and skills can influence retinoblastoma research and highlights real-world examples of patient-partnered research activities at different stages of the research process., (Copyright © 2022 Longwoods Publishing.)

Global cooperation is an integral component of global health research and practice. One Retinoblastoma World (1RBW) is a cooperative network of global treatment centers that care for children affected by retinoblastoma. The study aimed to determine the number, scope and nature of collaborations within 1RBW, and uncover how they are perceived to contribute towards improving retinoblastoma outcomes. A cross-sectional, mixed-methods egocentric network analysis was conducted. Treatment centers (n = 170) were invited to complete an electronic survey to identify collaborative activities between their institution (ego), and respective partners (alters). Network maps were generated to visualize connectivity. Key informants (n = 18) participated in semi-structured interviews to add details about the reported collaborations. Interviews were analysed through inductive thematic analysis. Surveys were completed by 56/170 (33%) of 1RBW treatment centers. Collectively, they identified 112 unique alters (80 treatment centers; 32 other organizations) for a total network size of 168 nodes. Most collaborations involved patient referrals, consultations and twinning/capacity building. Interviews identified four main themes: conceptualization of partnership; primary motivation for collaborations; common challenges to collaboration; and benefits to partnership. There is extensive global collaboration to reduce global retinoblastoma mortality, but there is room to expand connectivity through active efforts to include actors located at network peripheries., Competing Interests: The authors have no competing interests to disclose., (Copyright: © 2021 Girdler et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Primary health care is essential for equitable, cost-effective and sustainable health care. It is the cornerstone to achieving universal health coverage against a backdrop of rising health expenditure and aging populations. Implementing strong primary health care requires grassroots understanding of health system performance. Comparing successes and barriers between countries may help identify mutual challenges and possible solutions. This paper compares and analyses primary health care policy in Australia, Malaysia, Mongolia, Myanmar, Thailand and Vietnam. Data were collected at the World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians (WONCA) Asia-Pacific regional conference in November 2017 using a predetermined framework. The six countries varied in maturity of their primary health care systems, including the extent to which family doctors contribute to care delivery. Challenges included an insufficient trained and competent workforce, particularly in rural and remote communities, and deficits in coordination within primary health care, as well as between primary and secondary care. Asia-Pacific regional policy needs to: (1) focus on better collaboration between public and private sectors; (2) take a structured approach to information sharing by bridging gaps in technology, health literacy and interprofessional working; (3) build systems that can evaluate and improve quality of care; and (4) promote community-based, high-quality training programs.

Background: Retinoblastoma is a childhood cancer of the eye that can have lifelong effects on patients and families. The purpose of this study was for people affected by retinoblastoma, clinicians and researchers to jointly determine the top 10 retinoblastoma research priorities in Canada., Methods: An adaptation of the James Lind Alliance Priority Setting Partnership (PSP) methodology was employed. People were invited to participate in any stage of the priority-setting process if they were a resident of Canada, and were a patient with retinoblastoma (or a family member or friend of someone diagnosed with retinoblastoma) or a clinician or researcher interested in retinoblastoma. Patients were full partners in study design and implementation, and result dissemination, through involvement in a national working group (1 patient and 9 nonpatients) and steering committee (4 patients and 11 nonpatients). In phase 1 of the study, participants responded to an online survey that asked, "What questions about retinoblastoma would you like to see answered by research?" In phase 2, the steering committee reviewed and refined the list of survey responses and decided on a list of 30 questions to be ranked by means of the nominal group technique in phase 3, a priority-setting workshop., Results: In total, 175 retinoblastoma research questions were suggested by 59 survey participants (38 patients and 21 nonpatients). The categories with the greatest number of questions were genetics and molecular (45 [25.7%]), second cancer (29 [16.6%]) and psychosocial (27 [15.4%]). The top 10 questions as ranked by the workshop participants (10 patients and 10 nonpatients) fell into 7 categories: second cancer (2 questions), follow-up (2), psychosocial (2), treatment (1), diagnosis (1), global health (1) and miscellaneous (1). The early diagnosis of retinoblastoma was identified as the top retinoblastoma research priority in Canada., Interpretation: The list of priorities will serve as a resource for advocacy groups, research teams and funding agencies that focus on retinoblastoma. The inclusion of researchers as participants was an adaptation of the James Lind Alliance PSP methodology and enriched the research prioritization process., Competing Interests: Competing interests: None declared., (Copyright 2020, Joule Inc. or its licensors.)

Background: We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents., Methods: Focus groups were held in Toronto and Calgary, including both in-person and remote participants (via videoconference). Discussions centred on experience with retinoblastoma, knowledge of the disease and engagement with research. Focus group transcripts were evaluated by inductive thematic analysis., Results: Four focus groups (3 in Toronto, 1 in Calgary) were held with a collective total of 34 participants. Retinoblastoma had a substantial impact on the life of participants, but overall, patients reported being able to adapt and persevere. Experiential knowledge of retinoblastoma was identified as distinct from the theoretical knowledge held by their clinicians. Participants indicated they often acted as a knowledge broker, communicating information about the cancer to their social networks. Participants were willing to engage in research as partners, but recognized barriers such as time and appropriate training., Conclusions: Patients view their experiential knowledge of retinoblastoma as valuable to improving care and directing research. There is a unique role for research engagement in meeting the educational needs of patients., (© 2020 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Plain English Summary: Retinoblastoma is a rare eye cancer that occurs in one or both eyes of infants and young children as a result of errors in the RB1 gene. There are approximately 2000 retinoblastoma survivors in Canada. Those with the heritable form of the disease are at risk of passing the gene to the next generation and developing a second cancer. Many retinoblastoma survivors and families therefore interact with the healthcare system throughout their lives.The retinoblastoma community has a longstanding history of engaging patients in research, however without any formal process. The literature establishes benefits to patient engagement such as research results which are more applicable, credible, and transparent. Building on the established interest among stakeholders, the Canadian Retinoblastoma Research Advisory Board (CRRAB) was established in 2016 to foster sustainable and meaningful collaboration between patients (survivors and family members), advocacy groups, healthcare professionals, and researchers in the retinoblastoma community.The aim of this study was to evaluate the utility of CRRAB in fostering patient engagement in research. Members of CRRAB were surveyed to uncover their attitudes towards and experience with patient engagement in research. Participants perceived CRRAB to provide diverse and accessible opportunities for patient engagement in research and perceived their participation to have a meaningful impact. The results suggest that CRRAB promotes patient engagement in retinoblastoma research, and provides direction to sustain and enhance future patient engagement., Abstract: Background The Canadian Retinoblastoma Research Advisory Board (CRRAB) is a multidisciplinary group, including patients (survivors and family members), advocacy groups, healthcare professionals, and researchers, which aims to establish and sustain patient engagement in retinoblastoma research. The purpose of this study was to describe the development of CRRAB and to uncover members' understanding of and attitudes towards patient engagement in research. As well, to determine their level of engagement. Methods Retinoblastoma patients, healthcare professionals, and researchers provided leadership to co-develop CRRAB. CRRAB members were surveyed by pre- and post-test questionnaire at the 2016 Annual General Meeting to assess experience with, understanding of, and attitudes towards patient engagement in research. A second questionnaire was administered before the 2017 CRRAB meeting to assess awareness and perceived impact of CRRAB activities, and individual engagement in research. Data were analyzed by descriptive statistics and paired t-test (for pre/post-test). Thematic analysis of chart board discussions at both meetings revealed the joint goals of CRRAB and reasons for and barriers to patient engagement. Results In 2016, 21 individuals participated and self-identified as patients (11, 52%), healthcare professionals (6, 29%), and/or researchers (7, 33%) (participants could overlap stakeholder groups). Overall, participants believed that research is relevant to all stakeholders and that patients can have meaningful impact on research. In 2017, 35 individuals participated and identified as patients (21, 60%), healthcare professionals (9, 26%), and/or researchers (8, 23%). 94% of participants were aware of CRRAB initiatives and 67% had participated in at least one over the previous year. Participants perceived that CRRAB provides diverse opportunities and increases accessibility for patient engagement in research, and perceived patient engagement to have meaningful impact on retinoblastoma research. Chart board discussions revealed that participants wanted to be part of CRRAB to increase knowledge, support innovation and patient engagement, and be part of a community. Members most commonly faced barriers including time and cost restraints. Conclusions The results of this study suggest that CRRAB has supported the engagement needs of patients affected by retinoblastoma, and has provided an opportunity for engaging patients in retinoblastoma research. CRRAB will continue to be used as a framework for patient engagement, with improvements based on participant feedback., Competing Interests: Competing interestsThe authors declare that they have no competing interests., (© The Author(s). 2020.)

Background: Breast cancer is the commonest cancerous cause of mortality in Australian women. It is now well established that mammography is effective in reducing this mortality through screening. To this end all states of Australia have established breast cancer screening programs using mammography as their investigative modality. The purpose of this review is to determine the value of clinical breast examination as another screening tool available to general practitioners., Objective: We identified and examined a large amount of literature relating to this subject through Medline search, the Cochrane Library and hand searching (using keywords 'breast neoplasm', 'screening', 'breast self examination' and 'clinical breast examination'). The review of articles was undertaken by both authors, one of whom has extensive experience as a breast physician., Discussion: Clinical breast examination for symptomatic women shows a true positive rate or sensitivity of 85%, a false positive rate of 20% and specificity of 80% for detecting the probability of cancer. The positive predictive value of this test is 81% and the negative predictive value is 84%. The sensitivity would be lower for asymptomatic women., Conclusion: Much has been written about screening for breast cancer. However, the absence of comprehensive studies leaves the evidence for CBE somewhat in dispute. In the absence of any harm from the procedure, it is difficult to support the currently accepted Australian evidence based guidelines which discourage the practice of CBE. It would seem more prudent given the disagreement in the literature and the acceptability of CBE to both GPs and patients to consider that there is value in using CBE as a screening tool.