Lesley Moody

Symptom Burden in the First Year After Cancer Diagnosis: An Analysis of Patient-Reported Outcomes

Purpose Improvement in the quality of life of patients with cancer requires attention to symptom burden across the continuum of care, with the use of patient-reported outcomes key to achieving optimal care. Yet there have been few studies that have examined symptoms in the early postdiagnosis period during which suboptimal symptom control may be common. A comprehensive analysis of temporal trends and risk factors for symptom burden in newly diagnosed patients with cancer is essential to guide supportive care strategies. Methods A retrospective observational study was performed of patients who were diagnosed with cancer between January 2007 and December 2014 and who survived at least 1 year. Patient-reported Edmonton Symptom Assessment System scores, which are prospectively collected at outpatient visits, were linked to provincial administrative health care data. We described the proportion of patients who reported moderate-to-severe symptom scores by month during the first year after diagnosis according to disease site. Multivariable logistic regression models were constructed to identify risk factors for moderate-to-severe symptom scores. Results Of 120,745 patients, 729,861 symptom assessments were recorded within 12 months of diagnosis. For most symptoms, odds of elevated scores were highest in the first month, whereas nausea had increased odds of elevated scores up to 6 months after diagnosis. On multivariable analysis, cancer site, younger age, higher comorbidity, female sex, lower income, and urban residence were associated with significantly higher odds of elevated symptom burden. Conclusion A high prevalence of moderate-to-severe symptom scores was observed in cancers of all sites. Patients are at risk of experiencing multiple symptoms in the immediate postdiagnosis period, which underscores the need to address supportive care requirements early in the cancer journey. Patient subgroups who are at higher risk of experiencing moderate-to-severe symptoms should be targeted for tailored supportive care interventions.

Recurrence in Resected Gastroenteropancreatic Neuroendocrine Tumors

This cohort study examines recurrence outcomes in patients with fully resected gastroenteropancreatic neuroendocrine tumors.

Follow-Up for Resected Gastroenteropancreatic Neuroendocrine Tumours: A Practice Survey of the Commonwealth Neuroendocrine Tumour Collaboration (CommNETS) and the North American Neuroendocrine Tumor Society (NANETS)

Objectives: There is no consensus regarding optimal follow-up in resected gastroenteropancreatic neuroendocrine tumours (NETs). We aimed to perform a practice survey to ascertain follow-up patterns by health care practitioners and highlight areas of variation that may benefit from further quantitative research. Methods: A Web-based survey targeted at NET health care providers in Australia, New Zealand, Canada, and the USA was developed by a steering committee of medical oncologists and a research methodologist. Thirty-seven questions elicited information regarding adherence to guidelines, the influence of risk factors on follow-up, and the frequency and choice of modality in follow-up. Results: There were 163 respondents: 59 from Australia, 25 from New Zealand, 46 from Canada, and 33 from the USA (50% medical oncology, 23% surgery, 13% nuclear medicine, and 15% other). Thirty-eight percent of the respondents were “very familiar” with the NCCN NET guidelines, 33% with the ENETS guidelines, and 17% with the ESMO guidelines; however, only 15, 27, and 10%, respectively, found them “very useful”; 63% reported not using guidelines at their institution. The commonest investigations used were CT scans (66%) and chromogranin A (86%). The US respondents were more likely to follow patients up past 5 years, and the Australian respondents utilized more functional and less cross-sectional imaging. When poor prognostic factors were introduced, the respondents recommended more visits and tests. Conclusions: This large international survey highlights variation in current follow-up practices not well addressed by the current guidelines. More quantitative research is required to inform the development of evidence-based guidelines tailored to the pattern of recurrence in NETs.

Follow-up recommendations for completely resected gastroenteropancreatic neuroendocrine tumors

There is no consensus on optimal follow-up for completely resected gastroenteropancreatic neuroendocrine tumors. Published guidelines for follow-up are complex and emphasize closer surveillance in the first 3 years after resection. Neuroendocrine tumors have a different pattern and timescale of recurrence, and thus require more practical and tailored follow-up. The Commonwealth Neuroendocrine Tumour Collaboration convened an international multidisciplinary expert panel, in collaboration with the North American Neuroendocrine Tumor Society, to create patient-centered follow-up recommendations for completely resected gastroenteropancreatic neuroendocrine tumors. This panel used the RAND/UCLA (University of California, Los Angeles) Appropriateness Method to generate recommendations. A large international survey was conducted outlining current the surveillance practice of neuroendocrine tumor practitioners and shortcomings of the current guidelines. A systematic review of available data to date was supplemented by recurrence data from 2 large patient series. The resultant guidelines suggest follow-up for at least 10 years for fully resected small-bowel and pancreatic neuroendocrine tumors and also identify clinical situations in which no follow-up is required. These recommendations stratify follow-up strategies based on evidence-based prognostic factors that allow for a more individualized patient-centered approach to this complex and heterogeneous malignant neoplasm.

Bringing person-centered care to practice with CCO’s guideline for person-centred care in adult oncology services.

65 Background: CCO ensures quality cancer care for 16 million residents in Ontario. CCO has identified person-centered care (PCC) as a top strategy in driving the quality agenda. CCO, in collaboration with the Program in Evidence-Based Care, developed a PCC Guideline to set the standard of care for people experiencing cancer in Ontario. A PCC video was developed as a tool for translating this knowledge to support healthcare providers to integrate Guideline recommendations into their practice. METHODS A Guideline Working Group (GWG), including patients and health care providers, conducted a literature review and assessed the quality, relevance and utility of available evidence. An Expert Panel reviewed the decisions of the GWG and an External Review was conducted to validate the final guideline. The PCC video was developed as a tool for knowledge translation by defining fundamental concepts of PCC with the objective of promoting uptake of the guideline. A 4-question survey based on the Kirkpatrick Model was embedded to evaluate the videos effectiveness. RESULTS Of 110 articles, only one guideline was found and was therefore reviewed exclusively. The GWG reviewed 68 recommendations, modifying 48, accepting 13 and rejecting 4; for a final set of 65 recommendations. External Review returned 73 responses. A total of 196 health care providers, 134 administrators, 53 patients and 103 others stakeholders participated in the video survey. The results in the table below compare the educational state of PCC before and after the video. CONCLUSIONS CCO has adapted and endorsed 65 recommendations to create a PCC Guideline for adult oncology in Ontario. The results of the video showed that baseline PCC knowledge is poor, and that the PCC Video initiated significant (p = 0.972) growth in this knowledge. Anecdotal evidence also suggests that the video positively affected health care providers confidence in adopting PCC. Future work is required to promote uptake and utilization of PCC Guideline at system-level. [Table: see text].

Assessing person-centered care readiness at a cancer system level through a provincial environmental scan in Ontario.

70 Background: Cancer Care Ontario (CCO) is an Ontario government agency which drives quality and improvement for the Ontario cancer system. Person-Centred Care (PCC) has been an identified goal both from the recent Institute of Medicine (IOM) report and as a corporate strategic priority at CCO. CCO is assessing the degree of PCC practiced in Ontarios Cancer system to design interventions to improve this aspect of care delivery and design. Currently no established or validated indicators for PCC have been tested and evaluation methodology of PCC is unclear. A baseline of the systems focus on PCC is required to establish a provincial plan to drive quality improvement. METHODS A series of 14 semi-structured interviews were conducted at Ontarios regional cancer centers (RCCs) to determine the degree of development of a PCC culture in Ontarios cancer system. Interviews were conducted with all 14 Regional Cancer Programs (RCPs) including: - 10 Patient and Family Advisors (PFAs); and - 56 RCPs and hospital leaders (Directors, Managers, Physicians, Nursing, Psychosocial Oncology providers). Sixty-six participants (direct interviews/questionnaires) were interviewed; questionnaires were received from 28 organizations (hospitals/RCCs). RESULTS Although 86% of interviewed organizations reported having a PCC corporate strategy, 41% of hospitals and 73% of RCCs do not have dedicated staff to support the strategy. 53% of organizations work with a Patient and Family Advisory Council (PFAC) and only 43% engage PFAs in decision-making tables with 94% of RCPs expressing a need for guidance on PFA engagement. Key facilitators to promote PCC are: strong and committed leadership and continuous staff engagement/education. Primary barriers include: equity in PFA recruitment, cultural resistance to PCC, and lack of evaluation frameworks. CONCLUSIONS Advancing PCC requires strong provincial direction, training to foster PFA engagement, and measurement and accountability frameworks for cultural change. Clear definitions on accountabilities for PCC roles and expectations for PFAs and staff are also key to supporting PCC regionally.

Using the experience-based design (EBD) approach to strengthen patients’ impact.

69 Background: The Experience Based Design (EBD) approach uses patient and clinician experiences to identify opportunities for improvement in the healthcare system. The EBD approach elicits subjective and personal patient, carer, and staff experiences at crucial points in the care pathway by encouraging them to share their stories. METHODS Cancer Care Ontario (CCO), an agency that oversees cancer services in Ontario, held an EBD workshop with the objectives of capacity building and facilitating healthcare improvements throughout the province. 110 participants (27 teams) from across Ontario attended the workshop to engage participants to take an active role in developing actionable plans to address patient experience issues. An evaluation following two years of EBD was necessary to: (a) determine EBD progress and effectiveness; (b) identify successes/challenges for getting projects off the ground; and (c) identify additional resources required to spread EBD across Ontario. The evaluation consisted of: 1) two province-wide electronic surveys (long survey for those directly involved in EBD projects; short survey for frontline staff) and 2) semi-structured phone interviews with patients/caregivers. RESULTS Some EBD projects have completed multiple initiatives; others are just beginning. Projects address process improvement (e.g., streamlining patient bookings), resource/tool development (e.g., symptom screening tools) and establishing patient advisory boards and committees. Five (28%) survey respondents said that EBD projects elicited implementation of 6 to 10 changes and 6 (38%) respondents indicated that: (1) respect for patient preferences and (2) communication, information and education were two principles of Person-Centred Care (PCC) that improved the most. CONCLUSIONS Future steps include development of a collaborative website, a symposium to showcase projects, an evaluation of the EBD initiative and peer-reviewed publication.

Evaluation of a system-level organizational approach to person-centered care education and implementation toolkit.

67 Background: Cancer Care Ontario (CCO) is an Ontario government agency which drives quality and improvement in the delivery of care and the patient experience for the Ontario cancer system. Person-Centred Care (PCC) has been identified as a goal from the recent Institute of Medicine (IOM) report and as a corporate strategic priority at CCO. As an initial step in a province-wide PCC strategy, CCO is developing and internally disseminating a patient engagement toolkit and eLearning module with expansion to regional cancer programs. METHODS The PCC eLearning module defines the care approach and explains the corporate goals and objectives of practicing PCC at CCO. Pre- and post-evaluation metrics are embedded to measure module impact on a rating scale with respect to: (1) understanding of PCC; (2) willingness to include the patient voice in CCO work; and (3) understanding of the role of patients who serve as advisors at CCO. The Patient Engagement Toolkit was developed as a step-by-step guide on why and how to engage Patients and Family Advisors (PFAs) in different organizational contexts. To test effectiveness and impact, we piloted the toolkit in 6 interactive sessions across 7 departments with 184 CCO employees over 2 months (Clinical Program and Quality Initiatives, Regional Program, Communication, Finance/Procurement/Facilities, HR, Business Analyst/Project Management Office). We are taking a comprehensive mixed methods evaluation approach with online surveys and key informant interviews to identify uptake and barriers. RESULTS Preliminary findings suggest considerable increase in the understanding of PCC and the role of PFAs at CCO, with 138 current instances of patient engagement in 1 quarter. After an introduction to the toolkit, many employees (86.7%) understood the value of engaging PFAs and most (63.7%) felt willing to start. CONCLUSIONS Initial program evaluation demonstrates an increase in the understanding and implementation of direct (e.g., joining committees/working groups) and indirect PFA engagement (e.g., speaking at events/in focus groups) across CCO departments. Further evaluation of the toolkit at a provincial level is needed.