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Purpose: Previous randomized controlled trials have demonstrated benefit from remote symptom monitoring (RSM) with electronic patient-reported outcomes. However, the racial diversity of enrolled patients was low and did not reflect the real-world racial proportions for individuals with cancer., Methods: This secondary, cross-sectional analysis evaluated engagement of patients with cancer in a RSM program. Patient-reported race was grouped as Black, Other, or White. Patient address was used to map patient residence to determine rurality using Rural-Urban Commuting Area Codes and neighborhood disadvantage using Area Deprivation Index. Key outcomes included (1) being approached for RSM enrollment, (2) declining enrollment, (3) adherence with RSM via continuous completion of symptom surveys, and (4) withdrawal from RSM participation. Risk ratios (RR) and 95% CI were estimated from modified Poisson models with robust SEs., Results: Between May 2021 and May 2023, 883 patients were approached to participate, of which 56 (6%) declined RSM. Of those who enrolled in RSM, a total of 27% of patients were Black or African American and 67% were White. In adjusted models, all patient population subgroups of interest had similar likelihoods of being approached for RSM participation; however, Black or African American patients were more than 3× more likely to decline participation than White participants (RR, 3.09 [95% CI, 1.73 to 5.53]). Patients living in more disadvantaged neighborhoods were less likely to decline (RR, 0.49 [95% CI, 0.24 to 1.02]), but less likely to adhere to surveys (RR, 0.81 [95% CI, 0.68 to 0.97]). All patient populations had a similar likelihood of withdrawing., Conclusion: Black patients and individuals living in more disadvantaged neighborhoods are at risk for lower engagement in RSM. Further work is needed to identify and overcome barriers to equitable participation.

Background: Radiotherapy delivery regimens can vary between a single fraction (SF) and multiple fractions (MF) given daily for up to several weeks depending on the location of the cancer or metastases. With limited evidence comparing fractionation regimens for oligometastases, there is support to explore toxicity levels to nearby organs at risk as a primary outcome while using SF and MF stereotactic ablative radiotherapy (SABR) as well as explore differences in patient-reported quality of life and experience., Methods: This study will randomize 598 patients in a 1:1 ratio between the standard arm (MF SABR) and the experimental arm (SF SABR). This trial is designed as two randomized controlled trials within one patient population for resource efficiency. The primary objective of the first randomization is to determine if SF SABR is non-inferior to MF SABR, with respect to healthcare provider (HCP)-reported grade 3-5 adverse events (AEs) that are related to SABR. Primary endpoint is toxicity while secondary endpoints include lesional control rate (LCR), and progression-free survival (PFS). The second randomization (BC Cancer sites only) will allocate participants to either complete quality of life (QoL) questionnaires only; or QoL questionnaires and a symptom-specific survey with symptom-guided HCP intervention. The primary objective of the second randomization is to determine if radiation-related symptom questionnaire-guided HCP intervention results in improved reported QoL as measured by the EuroQoL-5-dimensions-5levels (EQ-5D-5L) instrument. The primary endpoint is patient-reported QoL and secondary endpoints include: persistence/resolution of symptom reporting, QoL, intervention cost effectiveness, resource utilization, and overall survival., Discussion: This study will compare SF and MF SABR in the treatment of oligometastases and oligoprogression to determine if there is non-inferior toxicity for SF SABR in selected participants with 1-5 oligometastatic lesions. This study will also compare patient-reported QoL between participants who receive radiation-related symptom-guided HCP intervention and those who complete questionnaires alone., Trial Registration: Clinicaltrials.gov identifier: NCT05784428. Date of Registration: 23 March 2023., (© 2024. The Author(s).)

Introduction: Remote symptom monitoring (RSM) allows patients to electronically self-report symptoms to their healthcare team for individual management. Clinical trials have demonstrated overarching benefits; however, little is known regarding patient-perceived benefits and limitations of RSM programs used during patient care., Methods: This prospective qualitative study from December 2021 to May 2023 included patients with cancer participating in standard-of-care RSM at the University of Alabama at Birmingham (UAB) in Birmingham, AL, and the Univeristy of South Alabama (USA) Health Mitchell Cancer Institute (MCI) in Mobile, AL. Semi-structured interviews focused on patient experiences with and perceptions surrounding RSM participation. Interviews occurred over the phone, via digital videoconference, or in person, at the convenience of the patient. Grounded theory was used to conduct content coding and identify recurring themes and exemplary quotes using NVivo., Results: Forty patients (20 UAB, 20 MCI) were interviewed. Participants were predominately female (87.5%), aged 41-65 (50%), and married (57.5%). Data is consistent with local demographics, comprising mainly White (72.5%) and 27.5% Black individuals. Three main themes emerged regarding perceived benefits of RSM: (1) Facilitation of Proactive Management , identifying the patient's needs and intervening earlier to alleviate symptom burden; (2) Promotion of Symptom Self-Management , providing patients autonomy in their cancer care; and (3) Improvement in Patient-Healthcare Provider Relationships , fostering genuine connections based on healthcare team's responses. However, participants also noted Perceived Limitations of RSM ; particularly when support of symptom management was unnecessary, ineffective, or felt impersonal., Conclusion: This study focused on patient experiences when utilizing a RSM program while undergoing treatment for cancer and found benefits to its implementation that extended beyond symptom management. At the same time, patients noted drawbacks experienced during RSM, which can help with future tailoring of RSM programs. Patient perceptions should be regularly assessed and highlighted for successful and sustained implementation., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Stover has received unrelated research funding in the past two years from non-profit organizations [PCORI, NIH, AHRQ, Bladder Cancer Advocacy Network, Hematology/Oncology Pharmacy Association, Cancer and Aging Research Group (CARG), and the American Society of Clinical Oncology] and for-profit organizations [Sivan Innovation, UroGen Pharma Ltd., and Pfizer Global]). Dr. Basch has received payments as a scientific advisor for Navigating Cancer, AstraZenenca, Resilience, N-Power Medicine, and Verily). Dr. Rocque: Research/Contracts to Institution: Pfizer, Genetech, Armada, and Daiichi Sankyo and Consulting: Pfizer and Gilead). All other authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: The United Kingdom Childhood Cancer Study's (UKCCS's) matched cohort was established to examine the longer term morbidity and mortality of individuals previously diagnosed with cancer before 15 years of age, comparing future healthcare patterns in 5-year cancer survivors to baseline activity seen in age- and sex-matched individuals from the general population., Participants: Predicated on a national childhood cancer case-control study conducted in the early 1990s (4430 cases, 9753 controls) in England, Scotland and Wales, the case population comprises 3125 cancer survivors (>5 years), and the control population 7156 age- and sex-matched individuals from the general population who did not have cancer as a child. Participants are now being followed up via linkage to national administrative healthcare databases (deaths, cancers and secondary care hospital activity)., Findings to Date: Enabling the creation of cohorts with minimal selection bias and loss to follow-up, the original case-control study registered all newly diagnosed cases of childhood cancer and their corresponding controls, regardless of their family's participation. Early findings based on the registered case population found marked survival variations with age and sex across subtypes and differences with deprivation among acute lymphoblastic leukaemia (ALL) survivors. More recently, comparing the health-activity patterns of the case and control populations revealed that survivors of childhood ALL experienced excess outpatient and inpatient activity across their teenage/young adult years. Adding to increased risks of cancer and death and involving most clinical specialties, excesses were not related to routine follow-up monitoring and showed no signs of diminishing over time., Future Plans: With annual linkage updates, the UKCCS's maturing population-based matched cohorts provide the foundation for tracking the health of individuals through their lifetime. Comparing the experience of childhood cancer survivors to that of unaffected general-population counterparts, this will include examining subsequent morbidity and mortality, secondary care hospital activity and the impact of deprivation on longer term outcomes., Competing Interests: Competing interests: None of the authors have any conflicts of interest, (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Background: In 2007, Cancer Care Ontario began standardised symptom assessment as part of routine care using the Edmonton Symptom Assessment System (ESAS)., Aim: The purpose of this study was to evaluate the impact of ESAS on receipt of palliative care when compared with a matched group of unexposed patients., Design: A retrospective-matched cohort study examined the impact of ESAS screening on initiation of palliative care services provided by physicians or homecare nurses. The study included adult patients diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using 4 hard and 14 propensity score-matched variables, patients with cancer exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or end of study., Results: The final cohort consisted of 204 688 matched patients with no prior palliative care consult. The pairs were well matched. The cumulative incidence of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared with those who were not (27.9% (95% CI: 27.5% to 28.2%) versus 27.9% (95% CI: 27.5% to 28.2%)), when death is considered as a competing event. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04 to 1.08)., Conclusion: We have demonstrated that patients exposed to ESAS were more likely to receive palliative care services compared with patients who were not exposed. This observation provides real-world data of the impact of routine assessment with a patient-reported outcome., Competing Interests: Competing interests: LB: Genentech (honorarium). DH: Carevive (consultancy fees, member of scientific advisory board)., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: Although early palliative care is recommended, resource limitations prevent its routine implementation. We report on the preliminary findings of a mixed methods study involving a randomized controlled trial (RCT) of Symptom screening with Targeted Early Palliative care (STEP) and qualitative interviews., Methods: Adults with advanced solid tumors and an oncologist-estimated prognosis of 6-36 months were randomized to STEP or symptom screening alone. STEP involved symptom screening at each outpatient oncology visit; moderate to severe scores triggered an email to a palliative care nurse, who offered referral to in-person outpatient palliative care. Patient-reported outcomes of quality of life (FACT-G7; primary outcome), depression (PHQ-9), symptom control (ESAS-r-CS), and satisfaction with care (FAMCARE P-16) were measured at baseline and 2, 4, and 6 months. Semi-structured interviews were conducted with a subset of participants., Results: From Aug/2019 to Mar/2020 (trial halted due to COVID-19 pandemic), 69 participants were randomized to STEP (n = 33) or usual care (n = 36). At 6 months, 45% of STEP arm patients and 17% of screening alone participants had received palliative care (p = 0.009). Nonsignificant differences for all outcomes favored STEP: difference in change scores for FACT-G7 = 1.67 (95% CI: -1.43, 4.77); ESAS-r-CS = -5.51 (-14.29, 3.27); FAMCARE P-16 = 4.10 (-0.31, 8.51); PHQ-9 = -2.41 (-5.02, 0.20). Sixteen patients completed qualitative interviews, describing symptom screening as helpful to initiate communication; triggered referral as initially jarring but ultimately beneficial; and referral to palliative care as timely., Conclusion: Despite lack of power for this halted trial, preliminary results favored STEP and qualitative results demonstrated acceptability. Findings will inform an RCT of combined in-person and virtual STEP., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

In cancer care, gaps in support to help patients manage and live with the side-effects from cancer treatments have increased the emphasis on empowering patients to be more active and involved in managing their own health. However, empowerment in relation to promoting self-management behaviors is not well understood. Using the social constructivist grounded theory approach, our goal was to develop a theoretical understanding of this phenomenon in relation to the self-management behaviors of post-treatment cancer patients. Twenty-two post-treatment cancer patients participated in a semi-structured focused interview to co-construct with us how empowerment is defined, described, and experienced in relation to their capacity to self-manage. Through this co-construction, we defined empowerment as a process of personal growth, a display of fortitude and strength when participants confronted the impact of their illness that emerged in two dynamic and paradoxical ways: 1) establishing control over the impact of the illness as a means to maintain normalcy and to circumvent change over an eroding and changing sense of self and 2) relinquishing control over aspects of the illness deemed irrepressible and acknowledging and accepting change. When successful at establishing and/or relinquishing control, participants no longer viewed cancer as a threat, but re-interpreted their illness as also having a beneficial "empowering" experience and more capable of managing. Findings will guide the development of self-management interventions that use empowerment as a core construct.

Background: Older adults living with cancer can experience significant challenges in managing their cancer treatment[s], care, and health. Cancer self-management is much discussed in the research literature, but less is known about the perceptions and experiences of older adults', including their self-management capacities and challenges. This study explored the factors that supported and hindered cancer self-management for older Canadian adults living with cancer., Methods: We conducted a 17-item population-based telephone survey in the Canadian province of British Columbia among older adults (age ≥ 65) living with cancer. Descriptive and inferential statistics were used to analyze quantitative data and thematic analysis for open-text responses., Results: 129 older adults participated in the study (median age 76, range: 65-93), of which 51% were living with at least one other chronic illness. 20% reported challenges managing their cancer treatment and appointments, while only ~4% reported financial barriers to managing cancer. We organized the findings around enabling and encumbering factors to older adults cancer self-management. The main encumbering factors to self-management included health system and personal factors (physical and emotional challenges + travel). Whereas enablers included: access to interpersonal support, helpful care team, interpersonal support and individual mindset., Conclusions: Considering factors which enable or encumber older adults' cancer self-management is critical to supporting the growing aging population in the work required to manage cancer treatment and navigate cancer services. Our findings may guide the development of tailored resources for bolstering effectual self-management for older Canadians living with cancer.

Competing Interests: Disclosure MDM reports honoraria from AstraZeneca, Boehringer Ingelheim, Janssen, Merck Sharp & Dohme (MSD), Novartis, Pfizer, Roche, Takeda for consultancy or participation to advisory boards and direct research funding from Tesaro/GlaxoSmithKline, institutional funding for work in clinical trials/contracted research from Beigene, Exelixis, MSD, Pfizer and Roche; EB reports institutional research funding from the United States National Cancer Institute and Patient-Centered Outcomes Research Institute (PCORI), payments for activities as an Associate Editor for the Journal of the American Medical Association (JAMA), and payments as a scientific advisor from the Research Triangle Institute, AstraZeneca, Carevive, Sivan, Navigating Cancer, Resilience and N-Power Medicine; FD has reported personal fees as an invited speaker from AstraZeneca, Bristol Myers Squibb (BMS), Chugai, Ipsen, Merck and Takeda; personal fees for advisory board membership of Roche; institutional fees for advisory board membership received from Sivan, institutional receiver was Hyperion and advisory board membership stopped 14 April 2020; member of Board of Directors for Kelindi (institutional receiver, Hyperion); institution (Hyperion) has participations and stocks in Kelindi (non-oncological software editor) and in the National Institut of e-Health; he has also reported non-remunerated activities as a member of ASCO; LJF reports honoraria from Genomic Health, Novartis, Eli Lilly, prIME a Medscape Oncology Company, Pfizer, Sobi, MSD, 3P Solution, Veracyte, Voluntis and AstraZeneca for consultancy/participation on advisory boards. Also, grant funding from Veracyte, Eli Lilly, Roche and BMS; PAG reports honoraria from InformedDNA as member of Scientific Advisory Board, Oxford University Press as Editor-in-Chief of the Journal of the National Cancer Institute, royalties from Up-to-date as section editor on Cancer Survivorship, institutional funding for work in clinical trials/contracted research from Blue Note Therapeutics, consultant for Grail and Blue Note Therapeutics and non-remunerated leadership roles for the Breast Cancer Research Foundation as member of Scientific Advisory Board; DH reports honoraria for consultancy and participation on the scientific advisory board of Carevive Systems, institutional funding for work on clinical trials from AstraZeneca and contracted research funding from the Leukemia and Lymphoma Society of Canada, contractual payment from York University, ON, Canada for course development and teaching; CK is a full-time employee of the German Cancer Society, a non-profit. He reports non-remunerated leadership roles for the non-profits German Association of Medical Sociology (board of directors, treasurer) and the German Network on Health Services Research (section chair, oncology section); FP reports honoraria from Bayer, Pierre Fabre, AstraZeneca, Incyte, Ipsen, Clovis, Astellas, Sanofi, institutional funding for work in clinical trials/contracted research from Roche, Bayer, AstraZeneca, Pfizer, Incyte, Tesaro/GlaxoSmithKline, Merck, non-remunerated leadership roles for Associazione Italiana di Oncologia Medica – AIOM (future President); AMS reports honoraria from the Association of Community Cancer Centers, Pfizer, Genentech, Purchaser Business Group on Health, and Henry Ford Cancer Center, a financially compensated leadership role in Navigating Cancer (consultant in 2021 for less than 5000 USD), institutional funding for work in clinical trials/contracted research from Sivan Innovation and UroGen Pharma Ltd, and grant funding from PCORI, National Institutes of Health, Agency for Healthcare Research and Quality, Bladder Cancer Advocacy Network, Hematology/Oncology Pharmacy Association, Cancer and Aging Research Group; PS reports non-remunerated leadership roles with the Trans Tasman Radiation Oncology Group, Clinical Oncology Society of Australia and Head and Neck Cancer Australia; JFD reports honoraria from International Association for the Study of Lung Cancer (invited speaker), Fred Hutchinson Cancer Research Center (PCORI project), Genentech (advisory board), Pfizer (advisory board); financial compensation from International Association for the Study of Lung Cancer (independent consultant) and the United States government as a special employee and member of the Secretary's Advisory Committee for Human Research Protections (SACHRP); non-remunerated activities for LUNGevity (Scientific Advisory Board), National Cancer Institute (scientific panels); non-remunerated leadership roles for The ROS1ders (Vice President, Board Chair); and non-remunerated membership or affiliation with the International Association for the Study of Lung Cancer, American Society of Clinical Oncology, American Association for Cancer Research, Nuvalent, AnHeart Therapeutics and Turning Point Therapeutics; CIR reports honoraria from Kyowa Kirin, Molteni Pharma Spa, Mundipharma and Angelini Pharma for educational events and invited speaker; LW, LZ, KA and DS have declared no potential conflicts of interest.

Electronic patient-reported outcome (ePRO) applications promise great added value for improving symptom management and health-related quality of life. The aim of this narrative review is to describe the collection and use of ePROs for cancer survivorship care, with an emphasis on ePRO-symptom monitoring. It offers many different perspectives from research settings, while current implementation in routine care is ongoing. ePRO collection optimizes survivorship care by providing insight into the patients' well-being and prioritizing their unmet needs during the whole trajectory from diagnosis to end-of-life. ePRO-symptom monitoring can contribute to timely health risk detection and subsequently allow earlier intervention. Detection is optimized by automatically generated alerts that vary from simple to complex and multilayered. Using ePRO-symptoms during in-hospital consultation enhances the patients' conversation with the health care provider before making informed decisions about treatments, other interventions, or self-management. ePRO(-symptoms) entail specific implementation issues and complementary ethics considerations. The latter is due to privacy concerns, digital divide, and scarcity of adequately representative data for particular groups of patients.

After treatment, cancer survivors require ongoing, comprehensive care to improve quality of life, reduce disability, limit complications, and restore function. In Canada and internationally, follow-up care continues to be delivered most often by oncologists in institution-based settings. There is extensive evidence to demonstrate that this model of care does not work well for many survivors or our cancer systems. Randomized controlled trials have clearly demonstrated that alternate approaches to follow-up care are equivalent to oncologist-led follow-up in terms of patient outcomes, such as recurrence, survival, and quality of life in a number of common cancers. In this paper, we discuss the state of follow-up care for survivors of prevalent cancers and the need for more personalized models of follow-up. Indeed, there is no one-size-fits-all solution to post-treatment follow-up care, and more personalized approaches to follow-up that are based on individual risks and needs after cancer treatment are warranted. Canada lags behind when it comes to personalizing follow-up care for cancer survivors. There are many reasons for this, including difficulty in determining who is best served by different follow-up pathways, a paucity of evidence-informed self-management education and supports for most survivors, poorly developed IT solutions and systems, and uneven coordination of care. Using implementation science theories, approaches, and methods may help in addressing these challenges and delineating what might work best in particular settings and circumstances.

Background: Symptoms in patients with advanced cancer are often inadequately captured during encounters with the healthcare team. Emerging evidence demonstrates that weekly electronic home-based patient-reported symptom monitoring with automated alerts to clinicians reduces healthcare utilization, improves health-related quality of life, and lengthens survival. However, oncology practices have lagged in adopting remote symptom monitoring into routine practice, where specific patient populations may have unique barriers. One approach to overcoming barriers is utilizing resources from value-based payment models, such as patient navigators who are ideally positioned to assume a leadership role in remote symptom monitoring implementation. This implementation approach has not been tested in standard of care, and thus optimal implementation strategies are needed for large-scale roll-out., Methods: This hybrid type 2 study design evaluates the implementation and effectiveness of remote symptom monitoring for all patients and for diverse populations in two Southern academic medical centers from 2021 to 2026. This study will utilize a pragmatic approach, evaluating real-world data collected during routine care for quantitative implementation and patient outcomes. The Consolidated Framework for Implementation Research (CFIR) will be used to conduct a qualitative evaluation at key time points to assess barriers and facilitators, implementation strategies, fidelity to implementation strategies, and perceived utility of these strategies. We will use a mixed-methods approach for data interpretation to finalize a formal implementation blueprint., Discussion: This pragmatic evaluation of real-world implementation of remote symptom monitoring will generate a blueprint for future efforts to scale interventions across health systems with diverse patient populations within value-based healthcare models., Trial Registration: NCT04809740 ; date of registration 3/22/2021., (© 2022. The Author(s).)

The number of survivors of cancer is increasing substantially. Current models of care are unsustainable and fail to address the many unmet needs of survivors of cancer. Numerous trials have investigated alternate models of care, including models led by primary-care providers, care shared between oncology specialists and primary-care providers, and care led by oncology nurses. These alternate models appear to be at least as effective as specialist-led care and are applicable to many survivors of cancer. Choosing the most appropriate care model for each patient depends on patient-level factors (such as risk of longer-term effects, late effects, individual desire, and capacity to self-manage), local services, and health-care policy. Wider implementation of alternative models requires appropriate support for non-oncologist care providers and endorsement of these models by cancer teams with their patients. The COVID-19 pandemic has driven some changes in practice that are more patient-centred and should continue. Improved models should shift from a predominant focus on detection of cancer recurrence and seek to improve the quality of life, functional outcomes, experience, and survival of survivors of cancer, reduce the risk of recurrence and new cancers, improve the management of comorbidities, and reduce costs to patients and payers. This Series paper focuses primarily on high-income countries, where most data have been derived. However, future research should consider the applicability of these models in a wider range of health-care settings and for a wider range of cancers., Competing Interests: Declaration of interests DH reports personal fees and other support from Carevive and personal fees from York University (Toronto, ON, Canada), outside the submitted work., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Objectives: To examine morbidity and mortality among teenagers and young adults (TYAs) previously diagnosed with acute lymphoblastic leukaemia (ALL) in childhood, and compare to the general TYA population., Design: National population-based sex-matched and age-matched case-control study converted into a matched cohort, with follow-up linkage to administrative healthcare databases., Setting: The study population comprised all children (0-14 years) registered for primary care with the National Health Service (NHS) in England 1992-1996., Participants: 1082 5-year survivors of ALL diagnosed<15 years of age (1992-1996) and 2018 unaffected individuals; followed up to 15 March 2020., Main Outcome Measures: Associations with hospital activity, cancer and mortality were assessed using incidence rate ratios (IRR) and differences., Results: Mortality in the 5-year ALL survivor cohort was 20 times higher than in the comparison cohort (rate ratio 21.3, 95% CI 11.2 to 45.6), and cancer incidence 10 times higher (IRR 9.9 95% CI 4.1 to 29.1). Hospital activity was increased for many clinical specialties, the strongest associations being for endocrinology; outpatient IRR 36.7, 95% CI 17.3 to 93.4 and inpatient 19.7, 95% CI 7.9 to 63.2 for males, and 11.0, 95% CI 6.2 to 21.1 and 6.2 95% CI 3.1 to 13.5, respectively, for females. Notable excesses were also evident for cardiology, neurology, ophthalmology, respiratory medicine and general medicine. Males were also more likely to attend gastroenterology; ear, nose and throat; urology; and dermatology, while females were more likely to be seen in plastic surgery and less likely in midwifery., Conclusions: Adding to excess risks of death and cancer, survivors of childhood ALL experience excess outpatient and inpatient activity across their TYA years, which is not related to routine follow-up monitoring. Involving most clinical specialties, associations are striking, showing no signs of diminishing over time. Recognising that all survivors are potentially at risk of late treatment-associated effects, our findings underscore the need to take prior ALL diagnosis into account when interpreting seemingly unrelated symptoms later in life., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

Introduction: Improving the quality of self-management support (SMS) for treatment-related toxicities is a priority in cancer care. Successful implementation of SMS programmes depends on tailoring implementation strategies to organisational readiness factors and barriers/enablers, however, a systematic process for this is lacking. In this formative phase of our implementation-effectiveness trial, Self-Management and Activation to Reduce Treatment-Related Toxicities, we evaluated readiness based on constructs in the Consolidated Framework for Implementation Research (CFIR) and Normalisation Process Theory (NPT) and developed a process for mapping implementation strategies to local contexts., Methods: In this convergent mixed-method study, surveys and interviews were used to assess readiness and barriers/enablers for SMS among stakeholders in 3 disease site groups at 3 regional cancer centres (RCCs) in Ontario, Canada. Median survey responses were classified as a barrier, enabler or neutral based on a priori cut-off values. Barriers/enablers at each centre were mapped to CFIR and then inputted into the CFIR-Expert Recommendations for Implementing Change Strategy Matching Tool V.1.0 (CFIR-ERIC) to identify centre-specific implementation strategies. Qualitative data were separately analysed and themes mapped to CFIR constructs to provide a deeper understanding of barriers/enablers., Results: SMS in most of the RCCs was not systematically delivered, yet most stakeholders (n=78; respondent rate=50%) valued SMS. For centre 1, 7 barriers/12 enablers were identified, 14 barriers/9 enablers for centre 2 and 11 barriers/5 enablers for centre 3. Of the total 46 strategies identified, 30 (65%) were common across centres as core implementation strategies and 5 tailored implementation recommendations were identified for centres 1 and 3, and 4 for centre 2., Conclusions: The CFIR and CFIR-ERIC were valuable tools for tailoring SMS implementation to readiness and barriers/enablers, whereas NPT helped to clarify the clinical work of implementation. Our approach to tailoring of implementation strategies may have relevance for other studies., Competing Interests: Competing interests: HA and LM were employees of Cancer Care Ontario (CCO, now part of Ontario Health), who provided in-kind support for this study., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

The interventions used in cancer-survivorship care do not always address outcomes important to survivors. This study sought to understand stakeholders' views on the key concerns of cancer survivors after treatment and the interventions needed to meet survivors' and families' psychosocial needs after completing cancer treatment. We conducted a descriptive qualitative study using semi-structured interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) from across Canada. For the data analysis, we used techniques commonly employed in descriptive qualitative research, such as coding, grouping, detailing, and comparing the data. There were 44 study participants: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-/policy-makers. Stakeholder-relevant interventions to address survivors' psychosocial needs were categorized into five groups, as follows: information provision, peer support, navigation, knowledge translation interventions, and caregiver-specific supports. These findings, particularly interventions that deliver timely and relevant information about the post-treatment period and knowledge translation interventions that strive to integrate effective tools and programs into survivorship care, have implications for future research and practice.

Background: Routine early palliative care (EPC) improves quality of life (QoL) for patients with advanced cancer, but it may not be necessary for all patients. We assessed the feasibility of Symptom screening with Targeted Early Palliative care (STEP) in a phase II trial., Methods: Patients with advanced cancer were recruited from medical oncology clinics. Symptoms were screened at each visit using the Edmonton Symptom Assessment System-revised (ESAS-r); moderate to severe scores (screen-positive) triggered an email to a palliative care nurse, who called the patient and offered EPC. Patient-reported outcomes of QoL, depression, symptom control, and satisfaction with care were measured at baseline and at 2, 4, and 6 months. The primary aim was to determine feasibility, according to predefined criteria. Secondary aims were to assess whether STEP identified patients with worse patient-reported outcomes and whether screen-positive patients who accepted and received EPC had better outcomes over time than those who did not receive EPC., Results: In total, 116 patients were enrolled, of which 89 (77%) completed screening for ≥70% of visits. Of the 70 screen-positive patients, 39 (56%) received EPC during the 6-month study and 4 (6%) received EPC after the study end. Measure completion was 76% at 2 months, 68% at 4 months, and 63% at 6 months. Among screen-negative patients, QoL, depression, and symptom control were substantially better than for screen-positive patients at baseline (all P<.0001) and remained stable over time. Among screen-positive patients, mood and symptom control improved over time for those who accepted and received EPC and worsened for those who did not receive EPC (P<.01 for trend over time), with no difference in QoL or satisfaction with care., Conclusions: STEP is feasible in ambulatory patients with advanced cancer and distinguishes between patients who remain stable without EPC and those who benefit from targeted EPC. Acceptance of the triggered EPC visit should be encouraged., Clinicaltrials: gov identifier: NCT04044040.

The outcomes assessed in cancer survivorship research do not always match the outcomes that survivors and health system stakeholders identify as most important in the post-treatment follow-up period. This study sought to identify stakeholder-relevant outcomes pertinent to post-treatment follow-up care interventions. We conducted a descriptive qualitative study using semi-structured telephone interviews with stakeholders (survivors, family/friend caregivers, oncology providers, primary care providers, and cancer system decision-/policy-makers) across Canada. Data analysis involved coding, grouping, detailing, and comparing the data by using the techniques commonly employed in descriptive qualitative research. Forty-four participants took part in this study: 11 survivors, seven family/friend caregivers, 18 health care providers, and eight decision-makers. Thirteen stakeholder-relevant outcomes were identified across participants and categorized into five outcome domains: psychosocial, physical, economic, informational, and patterns and quality of care. In the psychosocial domain, one's reintegration after cancer treatment was described by all stakeholder groups as one of the most important challenges faced by survivors and identified as a priority outcome to address in future research. The outcomes identified in this study provide a succinct suite of stakeholder-relevant outcomes, common across cancer types and populations, that should be used in future research on cancer survivorship care.

Aim: The purpose of this systematic review was to determine the effectiveness of self-management interventions for older adults with cancer and to determine the effective components of said interventions., Methods: We conducted a systematic review of self-management interventions for older adults (65+) with cancer guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement. We conducted an exhaustive search of the following databases: Ageline, AMED, ASSIA, CINAHL, Cochrane, Embase, Medline, PsychINFO, and Sociological Abstracts. We assessed for quality using the Cochrane Risk of Bias tool and Down & Black for quasi-experimental studies, with data synthesized in a narrative and tabular format., Results: Sixteen thousand nine hundred and eight-five titles and abstracts were screened, subsequently 452 full-text papers were reviewed by two independent reviewers, of which 13 full-text papers were included in the final review. All self-management interventions included in this review measured Quality of Life; other outcomes included mood, self-care activity, supportive care needs, self-advocacy, pain intensity, and analgesic intake; only one intervention measured frailty. Effective interventions were delivered by a multidisciplinary teams (n = 4), nurses (n = 3), and mental health professionals (n = 1). Self-management core skills most commonly targeted included: problem solving; behavioural self-monitoring and tailoring; and settings goals and action planning., Conclusions: Global calls to action argue for increased emphasize on self-management but presently, few interventions exist that explicitly target the self-management needs of older adults with cancer. Future work should focus on explicit pathways to support older adults and their caregivers to prepare for and engage in cancer self-management processes and behaviours., (© 2021 John Wiley & Sons Ltd.)

Individuals with cancer and their families assume responsibility for management of cancer as an acute and chronic disease. Yet, cancer lags other chronic diseases in its provision of proactive self-management support in routine, everyday care leaving this population vulnerable to worse health status, long-term disability, and poorer survival. Enabling cancer patients to manage the medical and emotional consequences and lifestyle and work changes due to cancer and treatment is essential to optimizing health and recovery across the continuum of cancer. In this paper, the Global Partners on Self-Management in Cancer puts forth six priority areas for action: Action 1: Prepare patients and survivors for active involvement in care; Action 2: Shift the care culture to support patients as partners in cocreating health and embed self-management support in everyday health-care provider practices and in care pathways; Action 3: Prepare the workforce in the knowledge and skills necessary to enable patients in effective self-management and reach consensus on core curricula; Action 4: Establish and reach consensus on a patient-reported outcome system for measuring the effects of self-management support and performance accountability; Action 5: Advance the evidence and stimulate research on self-management and self-management support in cancer populations; Action 6: Expand reach and access to self-management support programs across care sectors and tailored to diversity of need and stimulation of research to advance knowledge. It is time for a revolution to better integrate self-management support as part of high-quality, person-centered support and precision medicine in cancer care to optimize health outcomes, accelerate recovery, and possibly improve survival., (© The Author(s) 2020. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Purpose: People with cancer benefit from self-management support, but report limitations in the type/amount of support they receive from healthcare professionals during cancer treatment. To intervene in this critical period, our team is developing a web-based self-management system, called I Can Manage Cancer (ICMC). The purpose of this paper is to report patient and clinician perspectives on the preferred features and functions in a self-management system that informed the development of the ICMC program., Methods: We used descriptive qualitative methods, conducting interviews with people diagnosed with cancer (n = 16) and focus groups with cancer clinicians (n = 19). Data were thematically analyzed using the NVivo qualitative software., Findings: People with cancer describe engaging in hard work when employing cancer self-management. Our findings lend insight into features and functions they deem vital in a self-management system to support this work. Based on patient and clinician accounts, we developed three themes describing specific content and design features for the ICMC program to support self-management needs of people with cancer during the acute phase of treatment: (1) being able to connect, observe, and learn from others; (2) the ability to tailor and customize information; and (3) the capacity to track symptoms over time. Clinicians and patients emphasized the need to optimize all available resources to support people with cancer as they engage in the work to manage their diagnosis., Conclusions: Our findings describe the how peoples' cancer experiences and the gaps in self-management care can be enhanced by specific features and functions within the ICMC.

Background: The use of patient-reported outcomes (PROs) for routine cancer distress screening is endorsed globally as a quality-care standard. However, there is little research on the integration of PROs in "real-world" oncology practices using implementation science methods. The Improving Patient Experience and Health Outcome Collaborative (iPEHOC) intervention was established at multisite disease clinics to facilitate the use of PRO data by clinicians for precision symptom care. The aim of this study was to examine if patients exposed to the intervention differed in their healthcare utilization compared with contemporaneous controls in the same time frame., Methods: We used a PRE- and DURING-intervention population cohort comparison study design to estimate the effects of the iPEHOC intervention on the difference in difference (DID) for relative rates (RR) for emergency department (ED) visits, hospitalizations, psychosocial oncology (PSO), palliative care visits, and prescription rates for opioids and antidepressants compared with controls., Results: A small significantly lower Difference in Difference (DID) (- 0.223) in the RR for ED visits was noted for the intervention compared with controls over time (0.947, CI 0.900-0.996); and a DID (- 0.0329) for patients meeting ESAS symptom thresholds (0.927, CI 0.869-0.990). A lower DID in palliative care visits (- 0.0097), psychosocial oncology visits (- 0.0248), antidepressant prescriptions (- 0.0260) and an increase in opioid prescriptions (0.0456) in the exposed population compared with controls was also noted. A similar pattern was shown for ESAS as a secondary exposure variable., Conclusion: Facilitating uptake of PROs data may impact healthcare utilization but requires examination in larger scale "real-world" trials.

Background: The Edmonton Symptom Assessment System (ESAS) is a validated instrument whose use has been standardized in the Ontario cancer system to measure symptoms among ambulatory cancer patients. The objective was to examine the effect of ESAS exposure on overall survival. We hypothesized, a priori, that patients exposed to ESAS would have higher rates of overall survival than those who were not exposed., Methods: This was a retrospective matched cohort study of adults diagnosed with cancer between 2007 and 2015. Patients were considered exposed if they were screened with ESAS at least once during the study period. Their first ESAS screening date defined the index date. Each exposed patient was matched randomly to a cancer patient without ESAS using a combination of hard matching (4 variables) and propensity score matching (14 variables). Kaplan-Meier curves and multivariable Cox regression were used to evaluate the impact of ESAS exposure on survival., Results: There were 128,893 pairs well matched on all baseline characteristics. The probability of survival within the first 5 years was higher among those exposed to ESAS compared to those who were not (81.9% vs. 76.4% at 1 year, 68.3% vs. 66.1% at 3 years, 61.9% vs. 61.4% at 5 years, P-value < .0001). In the multivariable Cox regression model, ESAS was significantly associated with a decreased mortality risk (HR: 0.48, 95% CI: 0.47-0.49)., Conclusions: Our results show that ESAS exposure is associated with improved survival in cancer patients. This provides real world evidence of the impact of routine symptom assessment in cancer care., (© 2020 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Purpose: The role of mobile health (mHealth) technology in cancer care has evolved alongside the rapid development in digital technology. Its use can come with significant potential benefits; however, such use may also be associated with risks. This paper summarizes the latest developments around mHealth use in cancer care presented by a panel of experts at the 2019 Annual Meeting of the Multinational Association of Supportive Care in Cancer., Methods: Through lectures, case studies, and panel discussions, speakers and participants (including cancer specialist doctors, nurses, and allied health professionals) evaluated current and emerging mHealth methods for supportive care in cancer survivorship. Focus areas and special considerations were agreed upon by consensus., Results: Three focus areas for the use of mHealth in cancer care were identified: activation and support of self-management, exercise oncology, and enablement of survivorship care delivery. In addition to these focus areas, two special considerations were highlighted: technology-enhanced supportive cancer care for disparate populations, and ethical considerations relevant to the use of technology in supportive care., Conclusion: mHealth has the potential to revolutionize and transform cancer care delivery. Future research should guide further advances in the use of technology in supportive cancer care and carefully explore the safety, efficacy, cost-effectiveness, and implementation of interventions delivered through mHealth platforms.

Introduction: Technology is emerging as a solution to develop home-based, proactive 'real-time' symptom monitoring and management in cancer care. The Advanced Symptom Monitoring and Management System-Canada (ASyMS-Can) is a remote phone-based symptom management system that enables real-time remote monitoring of systemic chemotherapy toxicities., Methods and Analysis: This study is an open-label, prospective, mixed-method, Phase II, 2-arm parallel group assignment (ASyMS-Can vs usual care) feasibility study in patients with cancer receiving systemic (neo-adjuvant or adjuvant) chemotherapy at Princess Margaret Cancer Centre. A total of 114 patients will be recruited in oncology clinics prior to initiation of chemotherapy. Patients in both arms will complete a demographic and a set of questionnaires at enrolment, mid and end of treatment. Patients in intervention arm will be provided with an encrypted, secure, preprogrammed ASyMS phone for symptom reporting daily for the first 14 days of each chemotherapy treatment cycle up to sixth cycle (16 weeks). Feasibility metrics (recruitment, retention and protocol adherence) and outcomes to assess impact of ASyMS-Can include symptom severity, emotional distress, quality of life and acceptability to patients and clinicians., Ethics and Dissemination: The study has received ethical and institutional approvals from the University Health Network. Dissemination will include presentations at national/international conferences, and publications in peer-reviewed journals., Trial Registration Number: NCT03335189., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Context: Patients with advanced breast cancer have low rates of survival that can be associated with symptom burden., Objectives: This study seeks to characterize the effect of longitudinally collected symptom scores on predicting time to death for patients with advanced breast cancer., Methods: A cohort of 993 Stage IV breast cancer patients was constructed using linked population-level health administrative databases that captured longitudinally collected symptom data using the Edmonton Symptom Assessment System. Data were captured on individual symptom scores (20,371 assessments) for pain, tiredness, drowsiness, nausea, appetite, dyspnea, depression, anxiety, and wellbeing, as well as three summative scores of total symptom distress score, physical subscore, and psychological subscore. A joint modeling approach was undertaken to simultaneously model repeated-measures longitudinal data and time-to-event data., Results: Of patients who died in the study, 56.11% survived for a mean time of less than three years and had lower mean symptom scores for all symptoms except shortness of breath, in comparison with patients who lived for more than three years. Symptom burden was predictive of patient time to death for all symptoms, with risk of death increasing with worsening symptom scores. For total symptom distress score, age at diagnosis (0.009; P < 0.05), chemotherapy (-0.63; P < 0.001), and palliative care (3.15; P < 0.001) were significant predictors of patient time to death., Conclusion: Patients with advanced breast cancer experience chronic ongoing low symptom burden, which predicts patient time to death. Future research should examine the mechanisms by which patient characteristics, treatment, and supportive and palliative care can have an impact on patient survival., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Cancer predominates in adults over age 65. Cancer treatments are known to create physical and psychosocial challenges, which may be amplified for older adults with cancer. Learning and applying self-management behaviours and skills during treatment with cancer can help to manage/recover health and improve quality of life. In many other chronic illnesses, self-management interventions are known to improve health outcomes and lower healthcare costs. The purpose of this systematic review is to determine the effectiveness of self-management interventions for older adults with cancer on physical, psychosocial, and health system-related outcomes., Methods: We are conducting a systematic review of self-management interventions for older adults (65+) diagnosed with cancer (solid tumour or haematological) in the active treatment phase of cancer. This systematic review is guided by the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement. Studies are limited to experimental or quasi-experimental methods published in English, French, German, or Dutch. A search strategy was designed with a Health Sciences librarian and performed using the following electronic databases: Ageline, AMED, ASSIA, Cinahl, Cochrane, Embase, Medline, PsychINFO, and Sociological Abstracts. Approximately 14,000 titles and abstracts are being electronically screened by a minimum of 2 reviewers, with relevant studies to be screened for full text. The final sample of included studies will be assessed for quality using the Cochrane Risk of Bias tool and Down and Black for quasi-experimental studies, with data synthesized in a narrative and tabular format., Discussion: This systematic review will expand the knowledge base of interventions supporting self-management for older adults with cancer. This study will inform future intervention development by identifying gaps and strengths in effective self-management interventions targeting the needs of older adults receiving active treatment for cancer., Systematic Review Registration: PROPERO registry ID# CRD42019134113.

Background: Patient-reported outcomes (pros) are essential to capture the patient's perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting., Methods: The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14-15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice., Results: The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections covering 4 theme areas: Patient and Families, Health Policy, Clinical Implementation, and Research. The patient voice perfectly mirrors the recommendations that the experts reached by consensus and provides an overriding impetus for the use of pros in health care., Conclusions: Although our vision of pros transforming the health care system to be more patient-centred is still aspirational, the Position Statement presented here takes a first step toward providing recommendations in key areas to align Canadian efforts. The Position Statement is directed toward a health policy audience; future iterations will target other audiences, including researchers, clinicians, and patients. Our intent is that future versions will broaden the focus to include chronic diseases beyond cancer., Competing Interests: CONFLICT OF INTEREST DISCLOSURES We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and with the exceptions of the authors listed below, we declare that we have none or were unable to respond to the request for disclosures because of covid-19–related activities. LB has received an honorarium from Genentech and travel support from Elekta. AFK has received consulting fees from Allergan. RO has received grant funding from Varian Medical Systems., (2020 Multimed Inc.)

Although many studies have previously examined medicalisation, we add a new dimension to the concept as we explore how contemporary oncological medicine shapes the dying self as predominantly medical. Through an analysis of multiple case studies collected within a comprehensive cancer centre in Ontario, Canada, we examine how people with late-stage cancer and their healthcare providers enacted the process of medicalisation through engaging in the search for oncological treatments, such as experimental drug trials, despite the incurability of their disease. The seven cases included 20 interviews with patients, family, physicians and nurses, the analysis of 30 documents and 5 hr of field observation. A poststructural perspective informed our study. We propose that searching for life extension enacts medicalisation by shaping the dying person afflicted with terminal cancer into new medical subjectivities that are knowledgeable, active, entrepreneurial and curative. Participants initially took up medical thinking from the formal oncology system, but then began to apply and internalise medical rationalities to alter their personhood, thereby generating new curative possibilities for themselves. For people seeking life extension, the embodied and day-to-day experiences of suffering and being close to death became expressed and moderated in fundamentally medicalised terms., (© 2019 John Wiley & Sons Ltd.)

Background: We assessed whether the presence and severity of common cancer symptoms are associated with the health utility score (hus) generated from the EQ-5D (EuroQol Research Foundation, Rotterdam, Netherlands) in patients with cancer and evaluated whether it is possible pragmatically to integrate routine hus and symptom evaluation in our cancer population., Methods: Adult outpatients at Princess Margaret Cancer Centre with any cancer were surveyed cross-sectionally using the Edmonton Symptom Assessment System (esas) and the EQ-5D-3L, and results were compared using Spearman correlation coefficients and regression analyses., Results: Of 764 patients analyzed, 27% had incurable disease. We observed mild-to-moderate correlations between each esas symptom score and the hus (Spearman coefficients: -0.204 to -0.416; p < 0.0001 for each comparison), with the strongest associations being those for pain ( R = -0.416), tiredness ( R = -0.387), and depression ( R =-0.354). Multivariable analyses identified pain and depression as highly associated (both p < 0.0001) and tiredness as associated ( p = 0.03) with the hus. The ability of the esas to predict the hus was low, at 0.25. However, by mapping esas pain, anxiety, and depression scores to the corresponding EQ-5D questions, we could derive the hus using partial esas data, with Spearman correlations of 0.83-0.91 in comparisons with direct EQ-5D measurement of the hus., Conclusions: The hus derived from the EQ-5D-3L is associated with all major cancer symptoms as captured by the esas. The esas scores alone could not predict EQ-5D scores with high accuracy. However, esas-derived questions assessing the same domains as the EQ-5D-3L questions could be mapped to their corresponding EQ-5D questions to generate the hus, with high correlation to the directly measured hus. That finding suggests a potential approach to integrating routine symptom and hus evaluations after confirmatory studies., Competing Interests: CONFLICT OF INTEREST DISCLOSURES We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none., (2019 Multimed Inc.)

Background: Recent studies have demonstrated improved outcomes with real-time patient-reported outcome questionnaires (PRO questionnaires) using questions adapted for patient use from the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE). Outside of the clinical trial setting, limited information exists on factors affecting the completion of PRO questionnaires in routine practice. The primary aim of this prospective cross-sectional study was to evaluate patient willingness to complete PRO questionnaires on a regular basis and to better understand responder biases to improve patient feedback., Materials and Methods: Patients performing PRO-CTCAE toxicity and symptom PRO questionnaires in oncology clinics at Princess Margaret Cancer Centre from 2013 to 2016 were assessed for their willingness to complete PRO questionnaires using a nine-item, tablet-based acceptability survey. Patient-reported characteristics (i.e., age, sex, language, marital status, education, occupation, etc.), cancer type, treatment modalities, and health metrics (i.e., Eastern Cooperative Oncology Group) were also collected. Characteristics were evaluated by logistic regression (odds ratios [OR]) using the primary outcome with prespecified levels of significance for univariate ( p ≤ .10), and additional multivariate ( p ≤ .05) testing., Results: A total of 1,792 patients (median age 60 years; range 18-97) with various cancer diagnoses were assessed. A greater proportion of female (56%) and white (74%) respondents with an annual household income of <$100,000 (69%) participated. More than half (58%) of respondents were willing to complete PRO questionnaires at every clinic visit, and a high proportion (77%) found utility in reporting physical and emotional feelings to clinicians using PRO questionnaires. In general, patients did not find that PRO questionnaires made clinic visits more difficult (93%). In uni- and multivariable testing, patients were more willing to complete sleep- and fatigue-related PRO questionnaires relative to chemotoxicity-based PRO questionnaires (OR 1.52; p = .012). Patients aged 40-65 versus 18-40 years were also more likely to report high PRO questionnaire acceptability (OR 1.49; p = .025). Additional patient characteristics such as white ethnicity (OR 1.76), Canada as country of birth (OR 1.66), and English language (OR 2.15) relative to other had higher acceptability on uni- ( p < .001) and multivariable ( p < .001) analyses. Patients reporting treatment intent as palliative (OR 0.69; p = .0013) or hematological (OR 0.73; p = .027) were less likely to report high PRO questionnaire acceptability on univariable analysis; however, only palliative patients (OR 0.72) maintained this effect on multivariable testing ( p = .012). Patients reporting higher health utility scores (per change in .05) also had significantly increased PRO questionnaire acceptability in uni- (OR 1.06; p < .001) and multivariable (OR 1.05; p = .008) analyses. No significant differences in PRO questionnaire acceptability were seen between cancer types, education level, household income, employment status, or treatment modality., Conclusion: Routine assessment using PRO questionnaires is associated with moderate acceptability by patients with cancer. Specific patient characteristics are associated with higher completion willingness. Additional research is necessary to identify factors associated with low acceptability of PRO questionnaires and to develop site-, ethnicity-, and treatment-specific instruments to assess the value of PRO questionnaires for symptom monitoring in clinical practice., Implications for Practice: This study will help to identify the clinical, demographic, and survey characteristics associated with willingness to complete patient-reported outcome questionnaires regularly in the cancer outpatient setting., Competing Interests: Disclosures of potential conflicts of interest may be found at the end of this article., (© 2019 The Authors. The Oncologist published by Wiley Periodicals, Inc. on behalf of AlphaMed Press.)

A diagnosis of cancer and its treatment often have a profound impact on an individual's health-related quality of life-affecting physical, psychological, social, occupational, and financial domains. Person-centered care (PCC)-defined as a respectful, responsive, and tailored approach that meets patients' needs, values, and preferences-is becoming an integral part of comprehensive cancer care. The implementation of PCC into clinical practice provides benefits such as improvement in the quality of patient care, enhanced health-related outcomes, and significantly higher satisfaction with care. However, to guide and document more precisely the effects of PCC, various authors have argued that a more comprehensive measurement framework is needed. The primary goal of this paper is to present such an evolving framework based on extant evidence and developed in the context of a series of expert stakeholder meetings spearheaded by the Canadian Partnership Against Cancer (CPAC) that began in 2012. Developed collaboratively, the Cancer Experience Measurement Framework goes beyond existing patient experience frameworks by focusing on four key elements and related measures: the patient perspective, the family perspective, the combined patient-family perspective, and interactions with the healthcare system. In light of current healthcare trends promoting cancer self-management, patients as partners, and patient and family engagement in care, it is imperative that we conduct ongoing assessments using shared and psychometrically sound measures to ensure sound comparisons across settings, as well as better cancer-related processes and outcomes for indivduals affected by cancer.

Background: Health behaviors including smoking cessation, physical activity (PA), and alcohol moderation are key aspects of cancer survivorship. Immigrants may have unique survivorship needs. We evaluated whether immigrant cancer survivors had health behaviors and perceptions that were distinct from native-born cancer survivors., Methods: Adult cancer patients from Princess Margaret Cancer Centre were surveyed on their smoking, PA, and alcohol habits and perceptions of the effects of these behaviors on quality of life (QoL), 5-year survival, and fatigue. Multivariable models evaluated the association of immigration status and region-of-origin on behaviors and perceptions., Results: Of the 784 patients, 39% self-identified as immigrants. Median time of survey was 24 months after histological diagnosis. At baseline, immigrants had trends toward not meeting Canadian PA guidelines or being ever-drinkers; patients from non-Western countries were less likely to smoke (aOR current  = 0.46, aOR ex-smoker  = 0.47, P = 0.02), drink alcohol (aOR current  = 0.22, aOR ex-drinker  = 0.52, P < 0.001), or meet PA guidelines (aOR = 0.44, P = 0.006). Among immigrants, remote immigrants (migrated ≥40 years ago) were more likely to be consuming alcohol at diagnosis (aOR = 5.70, P < 0.001) compared to recent immigrants. Compared to nonimmigrants, immigrants were less likely to perceive smoking as harmful on QoL (aOR = 0.58, P = 0.008) and survival (aOR = 0.56, P = 0.002), and less likely to perceive that PA improved fatigue (aOR = 0.62, P = 0.04) and survival (aOR = 0.64, P = 0.08)., Conclusions: Immigrants had different patterns of health behaviors than nonimmigrants. Immigrants were less likely to perceive continued smoking as harmful and were less likely to be aware of PA benefits. Culturally tailored counselling may be required for immigrants who smoke or are physically sedentary at diagnosis., (© 2019 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Competing Interests: Competing interests: None declared.

Patients with advanced cancer can experience illness trajectories similar to other progressive chronic disease conditions where undertaking self-management (SM) and provision of self-management support (SMS) becomes important. The main objectives of this study were to map the literature of SM strategies and SMS needs of patients with advanced cancer and to describe SMS interventions tested in this patient population. A scoping review of all literature published between 2002 and 2016 was conducted. A total of 11 094 articles were generated for screening from MEDLINE, Embase, PsychINFO, CINAHL and Cochrane Library databases. A final 55 articles were extracted for inclusion in the review. Included studies identified a wide variety of SM behaviours used by patients with advanced cancer including controlling and coping with the physical components of the disease and facilitating emotional and psychosocial adjustments to a life-limiting illness. Studies also described a wide range of SMS needs, SMS interventions and their effectiveness in this patient population. Findings suggest that SMS interventions addressing SMS needs should be based on a sound understanding of the core skills required for effective SM and theoretical and conceptual frameworks. Future research should examine how a patient-oriented SMS approach can be incorporated into existing models of care delivery and the effects of SMS on quality of life and health system utilisation in this population., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: A patient's physical function is a critical outcome variable for measuring and improving chronic care management. However, patient-reported outcome measures of physical function are not routinely assessed in cancer outpatients, in part due to limitations of tools available. This study presents the development and evaluation of the Cancer Ambulatory Patient Physical Function Longitudinal Evaluation Tool (CAPLET) as an adaptive response tool for routinely screening for physical dysfunction in oncology clinical practice., Methods: In phase 1, 407 adult outpatients at Princess Margaret Cancer Centre completed the World Health Organization Disability Assessment Schedule (WHODAS) 2.0, Health Assessment Questionnaire Disability Index (HAQ-DI), EuroQuol-5D-3L ( EQ-5D-3L), and patient-reported outcome (PRO)-Eastern Cooperative Oncology Group (ECOG). CAPLET was developed based on a branching logic algorithm navigating patients to appropriate domains of HAQ-DI/WHOAS using their responses to the PRO-ECOG/EQ-5D-3L as screeners. Sensitivity/specificity of CAPLET screeners for HAQ-DI/WHODAS items were reported. In phase 2, CAPLET vs the WHODAS/HAQ-DI were alternatively administrated to 318 adult outpatients in a two-arm trial comparing time to completion and acceptability between the tools., Results: Using a patient's ECOG status and the sum of the mobility, self-care, and usual activity dimensions of the EQ-5D-3L to dichotomize patients as with or without difficulty, CAPLET achieved a sensitivity > 90% against recommended WHODAS and HAQ-DI cutoffs for significant dysfunction. Sensitivity of screeners for capturing dysfunction in individual WHODAS/HAQ-DI items ranged from 85 to 100%. Compared to the HAQ-DI/WHODAS, CAPLET was associated with a 50% reduction in administration times and improved patient acceptability, while reducing question burden by 84% for half the sample population., Conclusions: CAPLET improves the feasibility of capturing detailed assessments of patient-reported physical function in cancer outpatients.

Background: Cancer survivors face a myriad of biopsychosocial consequences due to cancer and treatment that may be potentially mitigated through enabling their self-management skills and behaviors for managing illness. Unfortunately, the cancer system lags in its systematic provision of self-management support (SMS) in routine care, and it is unclear what implementation approaches or strategies work to embed SMS in the cancer context to inform health policy and administrator decision-making., Methods/design: A comprehensive scoping review study of the literature will be conducted based on methods and steps identified by Arksey and O'Malley and experts in the field. Electronic searches will be conducted in multiple databases including CINAHL, CENTRAL, EMBASE, PsycINFO, MEDLINE, AMED, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE) (up to Issue 2, 2015), ISI Proceedings (Web of Science), PsychAbstracts, and Sociological Abstracts from January 1997 to November 5, 2018. Following the PRISMA-Extension for Scoping Reviews (PRISMA-ScR), two authors will independently screen all titles/abstracts to determine eligibility, data will be abstracted by one author and checked by a second author, and findings will be narratively summarized based on constructs of implementation in the Normalization Process Theory., Discussion: This will be the first scoping review study to synthesize knowledge of implementation of SMS in the cancer care context and the implementation approaches and strategies on embedding in care. This information will be critical to inform health policy and knowledge end users about the necessary changes in care to embed SMS in practices and to stimulate future research.

Purpose: Physical activity (PA) during and after cancer treatment is associated with improved cancer- and non-cancer-related outcomes. We assessed for predictors of change in PA levels among cancer survivors., Methods: Adult cancer survivors from a comprehensive cancer center completed a one-time questionnaire retrospectively assessing PA levels before, during, and after cancer treatment along with their perceptions of PA. Multivariable logistic regression models evaluated the association of clinico-demographics variables and perceptions of PA with changes in whether patients were meeting PA guidelines after cancer diagnosis., Results: Among the 1003 patients, 319 (32%) met moderate to vigorous PA (MVPA) guidelines before diagnosis. Among those meeting guidelines before diagnosis, 50% still met guidelines after treatment; 12% not meeting MVPA guidelines initially met them after treatment/at follow-up. Among patients meeting guidelines before diagnosis, better ECOG performance status at follow-up, receiving curative therapy, and spending a longer time on PA initially were each associated with meeting guidelines at follow-up. After controlling for other variables, perceiving that PA improves quality of life (adjusted odds ratio, aOR = 11.09, 95%CI [1.42-86.64], P = 0.02) and overall survival (aOR = 8.52, 95%CI [1.12-64.71], P = 0.04) was each associated with meeting MVPA guidelines during/after treatment, in patients who did not meet guidelines initially. Only 13% reported receiving counseling, which was not associated with PA levels. Common reported barriers to PA included fatigue, lacking motivation, and being too busy., Conclusions: Patient perceptions of PA benefits are strongly associated with improving PA levels after a cancer diagnosis. Clinician counseling should focus on patient education and changing patient perceptions.

Background: Increasing demands on health care systems require patients to take on more active roles in their health. Effective self-management has been linked to improved health outcomes, and evidence shows that effective self-management is linked to health literacy (HL). HL is an important predictor of successful self-management in other chronic diseases but has had minimal testing in cancer., Methods: A scoping review was conducted to examine and summarize what is known about the association between HL and self-management behaviors and health service utilization in the cancer setting. The methodological framework articulated by Arksey and O'Malley was used and was further refined with the Joanna Briggs Institute methodology. Inclusion criteria included the following: peer review; publication in English; and adult patients and caregivers of all races, ethnicities, and cultural groups. Use of a validated instrument to measure HL was required., Results: The search yielded 2414 articles. After the removal of duplicates and the performance of title scans and abstract reviews, the number was reduced to 44. Of the 44 full-text articles reviewed, 17 met the inclusion criteria. A number of important self-management behaviors and related outcomes were found to be associated with HL. These included the uptake of cancer screening, the receipt of prescribed chemotherapy, and a greater risk of postoperative complications., Conclusions: This literature review shows that HL is associated with important self-management behaviors in cancer. The implications of these associations for individuals with inadequate HL and for the health care system are significant. More research is needed to explore these associations., (© 2018 American Cancer Society.)

Objective: The Therapeutic Practices for Distress Management (TPDM) project was carried out to support clinicians in integrating recommendations from four clinical practice guidelines (CPGs) in routine care at five Pan Canadian cancer care sites., Methods: Using a concurrent, mixed-method study design and knowledge translation (KT) activities, this project included two phases: phase I-a baseline/preparation phase and phase II-an intervention phase plus evaluation. The intervention phase (the focus of this report) included a one-year education and supervision program (24 hours in virtual class; 12-hour group supervision). Primary outcomes were knowledge and self-efficacy in practicing CPGs as measured by a Knowledge and Self-Efficacy Survey (KSES). A secondary outcome was observer-rated performances with standardized patients (objective structured clinical exams). Participants included 80 (90%) nurses, and 9 (10%) social workers (N = 89)., Results: The TPDM program was effective in accomplishing change in knowledge, self-efficacy, and performance. All measures demonstrated significant change pre and post module, with evidence of increasing knowledge (P < .01) and confidence (P < .01) over time. Further, there was evidence of a shift in barriers and enablers to practicing in alignment with the CPGs., Conclusions: A tailored education program using case-based learning and supervision over time improves knowledge and practice among front line clinicians. The findings have implications for quality improvement in cancer care., (© 2018 John Wiley & Sons, Ltd.)

Purpose: Continued smoking after a cancer diagnosis leads to poorer treatment outcomes, survival, and quality of life. We evaluated the perceptions of the effects of continued smoking on quality of life, survival, and fatigue among patients with cancer after a cancer diagnosis and the effects of these perceptions on smoking cessation., Patients and Methods: Patients with cancer from all disease subsites from Princess Margaret Cancer Centre (Toronto, Ontario) were surveyed between April 2014 and May 2016 for sociodemographic variables, smoking history, and perceptions of continued smoking on quality of life, survival, and fatigue. Multivariable regression models evaluated the association between patients' perceptions and smoking cessation and the factors influencing patients' perceptions of smoking., Results: Among 1,121 patients, 277 (23%) were smoking cigarettes up to 1 year before diagnosis, and 54% subsequently quit; 23% had lung cancer, and 27% had head and neck cancers. The majority felt that continued smoking after a cancer diagnosis negatively affected quality of life (83%), survival (86%), and fatigue (82%). Current smokers during the peridiagnosis period were less likely to perceive that continued smoking was harmful when compared with ex-smokers and never-smokers ( P < .01). Among current smokers, perceiving that smoking negatively affected quality of life (adjusted odds ratio [aOR], 2.68 [95% CI, 1.26 to 5.72]; P = .011), survival (aOR, 5.00 [95% CI, 2.19 to 11.43]; P < .001), and fatigue (aOR, 3.57 [95% CI, 1.69 to 7.54]; P < .001) were each strongly associated with smoking cessation. Among all patients, those with a greater smoking history were less likely to believe that smoking was harmful in terms of quality of life (aOR, 0.98 [95% CI, 0.98 to 0.99]; P < .001), survival (aOR, 0.98 [95% CI, 0.98 to 0.99]; P < .001), and fatigue (aOR, 0.99 [95% CI, 0.98 to 0.99]; P < .001)., Conclusion: The perceptions of continued smoking after a cancer diagnosis among patients with cancer are strongly associated with smoking cessation. Counseling about the harms of continued smoking in patients with cancer, and in particular among those who have lower risk perceptions, should be considered when developing a smoking cessation program.

Purpose: The aims of this review were to (1) examine the effectiveness of Internet-based interventions on cancer chemotherapy-related physical symptoms (severity and/or distress) and health-related quality of life (HRQOL) outcomes and (2) identify the design elements and processes for implementing these interventions in oncology practices., Methods: A systematic review was performed. The Cochrane Database of Systematic Reviews, and Cochrane Central Register of Controlled Trials, EMBASE, MEDLINE, CINAHL, and PsycINFO were searched for studies dating from January 2000 through to October 2016. Based on pre-determined selection criteria, data was extracted from eligible studies. Methodological quality of studies was assessed using an adapted version of the Cochrane Collaboration Back Review Group checklist., Results: The literature search yielded 1766 studies of which only six RCTs fulfilled the eligibility criteria. Although the content, duration, and frequency of interventions varied considerably across studies, commonly used elements included tailored information, education, self-management support, and communication with clinicians. Five studies measured symptom distress and four of them reported statistically significant differences between study groups. Of the three studies that measured HRQOL, two reported improvement (or no deterioration over time) for the intervention group. However, several methodological issues including high attrition rates, poor adherence to interventions, and use of non-validated measures affect confidence in the strength of evidence., Conclusion: Despite the evidence in support of using the Internet as a worthwhile tool for effective patient engagement and self-management of chemotherapy-related symptoms outside clinic visits, methodological limitations in the evidence base require further well-planned and quality research.

Purpose: Previous work in Ontario demonstrated that 33% of patients with cancer with severe pain did not receive opioids at the time of their pain assessment. With efforts to increase symptom screening and management since then, the objective of this study was to examine temporal trends in opioid prescribing., Methods: The cohort was comprised of Ontario residents ≥ 65 years of age with a cancer history who were eligible for the government pharmacare program and had a pain assessment using the Edmonton Symptom Assessment System. Use of the Edmonton Symptom Assessment System is part of a provincial initiative to screen ambulatory patients with cancer for symptoms. Annually between 2007 and 2013, we used the date of an individual's highest pain score as the index date to calculate annual opioid prescription rates for claims within 30 days before and up to 7 days after the index date. A logistic regression model evaluated the association between index year and odds of receiving an opioid prescription., Results: During the study period, the number of individuals undergoing symptom assessment annually increased more than eight-fold. Opioid prescription rates were directly related to pain scores, but there was an annual 5% relative decrease in the odds of receiving an opioid prescription during the era from 2009 to 2013., Conclusion: We are doing better at screening for pain, but this has not led to an increase in analgesic intervention for those identified. Additional work is required to determine what opioid prescribing rate is optimal to ensure we are not missing opportunities to improve patient comfort.

Context: In 2007, Cancer Care Ontario introduced a provincial symptom screening program, which included pain, for cancer patients. Over this same time, opioid prescribing has been increasingly scrutinized among non-cancer patients. The study purpose was to see if opioid prescribing changed among older adults after 2007 in the context of changing opioid regulations, and whether effects were different among patients with a cancer history., Methods: Ontario residents aged ≥65 years were identified from 2004 to 2013. Subjects were annually stratified into three groups: no cancer history, cancer diagnosis >5 years ago, and cancer diagnosis ≤5 years ago. We evaluated time trends by year for: 1) opioid prescription rate, comparing trends before and after 2007 and 2) mean daily opioid dose., Results: Between 2004 and 2013, opioid prescribing was relatively constant for cancer patients with no observed change in trends after 2007. For non-cancer patients, there was a 2% relative annual increase during this period. Significant changes were seen for opioid sub-classes (e.g., decreasing use of long-acting oxycodone). These were similar for those with or without a history of cancer. Among all groups, changes in the mean daily dose over time were similar in all drug classes., Conclusion: Overall prescribing rates for cancer patients aged ≥65 years remain unchanged over time, in spite of the introduction of a provincial symptom screening program. Decreasing prescription rates in some drug sub-classes were observed. The potential impact of these changes on the quality of symptom control for cancer patients needs further investigation., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose: This systematic review was intended to identify the effectiveness and inclusion of essential components of self-management education interventions to support patients with cancer in developing the skills needed for effective self-management of their disease and the acute or immediate, long-term, and late harmful effects of treatments., Methods: Self-management education interventions were included if they were randomized controlled trials (RCTs) containing at least one of the eight core elements outlined by the research team. A systematic search was conducted in Ovid MEDLINE (2005 through April 2015), Embase (2005 to 2015, week 15), the Cochrane Database of Systematic Reviews (Issue 4, April 2015), CINAHL (2005 to 2015) and PsychINFO (2005 to 2015). Keywords searched include 'self-management patient education' or 'patient education'., Results: Forty-two RCTs examining self-management education interventions for patients with cancer were identified. Heterogeneity of interventions precluded meta-analysis, but narrative qualitative synthesis suggested that self-management education interventions improve symptoms of fatigue, pain, depression, anxiety, emotional distress and quality of life. Results for specific combinations of core elements were inconclusive. Very few studies used the same combinations of core elements, and among those that did, results were conflicting. Thus, conclusions as to the components or elements of self-management education interventions associated with the strength of the effects could not be assessed by this review., Conclusion: Defining the core components of cancer self-management education and the fundamental elements for inclusion in supporting effective self-management will be critical to ensure consistent and effective provision of self-management support in the cancer system.

Background: Cancer survivors face a range of negative physical and psychological effects that can be mitigated by participating in physical activity. Despite this, most do not meet recommended levels. Health care providers may be in a unique position to promote participation in physical activity among cancer survivors. The aim of this systematic review and meta-analysis is to synthesize the findings from randomized controlled trials and controlled clinical trials investigating the effectiveness of health care provider-administered physical activity recommendations on participation in physical activity among cancer survivors., Methods/design: Ten electronic databases (CINAHL, CENTRAL, Education Source, EMBASE, LILACS, MEDLINE, OTSeeker, PEDro, PsycINFO, SPORTDiscus) will be searched to identify relevant studies. The electronic searches will be supplemented by scanning the reference lists of relevant articles retrieved during these searches to ensure all potentially relevant studies are identified. Two reviewers will independently screen all titles and abstracts resulting from the searches to identify potentially eligible studies. They will then screen the full-text articles passing the first screen to identify studies for inclusion using predetermined inclusion/exclusion criteria, extract data from studies meeting all criteria, and assess the risk of bias of these studies. Results will be summarized narratively and statistically., Discussion: By summarizing the best available evidence for the effectiveness of health care provider physical activity recommendations for increasing participation in physical activity among cancer survivors, the results of this systematic review and meta-analysis will help determine if making physical activity recommendations effectively changes cancer survivors behaviour. It will also help to identify knowledge gaps and highlight areas in need of additional research.

Background: To improve the precision of health economics analyses in oncology, reference datasets of health utility (HU) scores are needed from cancer survivors across different disease sites. These data are particularly sparse amongst Canadian survivors., Methods: A survey was completed by 1759 ambulatory cancer survivors at the Princess Margaret Cancer Centre which contained demographic questions and the EuroQol-5D (EQ-5D) instrument. Clinical information was abstracted from electronic records and HU scores were calculated using Canadian health state valuations. Construct validity was assessed through correlation of HU and visual analog scale (VAS) scores (Spearman) and by comparing HU scores between performance status groups (effect size). The influence of socio-demographic clinical variables on HU was analyzed by non-parametric between-group comparisons and multiple linear regression., Results: Mean EQ-5D HU scores were derived for 26 cancers. Among all survivors, the mean ± standard error of the mean EQ-5D utility score was 0.81 ± 0.004. Scores varied significantly by performance status (p < 0.0001) and correlated with VAS (Spearman r = 0.61). The cancer sites with the lowest mean HU scores were acute lymphoblastic leukemia (0.70 ± 0.03) and pancreatic cancer (0.76 ± 0.03); testicular cancer (0.89 ± 0.02) and chronic lymphocytic leukemia (0.90 ± 0.05) had the highest mean scores. A multiple regression model showed that scores were influenced by disease site (p < 0.001), education level (p < 0.001), partner status (p < 0.001), disease extent (p = 0.0029), and type of most recent treatment (p = 0.0061)., Conclusions: This work represents the first set of HU scores for numerous cancer sites derived using Canadian preference weights. The dataset demonstrated construct validity and HU scores varied by general socio-demographic and clinical parameters.

Background: Routine screening for problematic symptoms is emerging as a best practice in cancer systems globally. The objective of this observational study was to assess the feasibility and diagnostic accuracy of Patient-Reported Outcomes Measurement Information System (PROMIS) computerized adaptive testing (CAT) for fatigue and sleep-disturbance items compared with legacy measures in routine ambulatory cancer care., Methods: Patients who attended outpatient clinics at the Princess Margaret Cancer Center completed PROMIS CAT item banks and legacy measures (the Functional Assessment of Chronic Illness Therapy [FACIT]-Fatigue scale and the Insomnia Severity Index [ISI]) using tablet computers during clinic visits. The completion rates, patient acceptability, and diagnostic accuracy of PROMIS CAT were evaluated against legacy measures using receiver operating characteristic (ROC) curve analysis., Results: Participants consisted of 336 patients (mean age ± standard deviation, 57.4 ± 15.7 years; 55% females; 75% Caucasian). Over 98% of patients did not find symptom screening was burdensome, although only 65% were willing to complete the survey at every visit. PROMIS CAT scores were significantly correlated with both FACIT-Fatigue scores (r = -0.83) and ISI scores (r = -0.57; p < 0.0001 for all). Areas under the curve (AUC) by ROC analysis for fatigue were 0.946 using the FACIT-Fatigue cutoff ≤30, 0.910 for sleep disturbance, and 0.922 for sleep impairment using the ISI cutoff ≥15. The recommended T-score cut-off for PROMIS CAT Fatigue was 57, Sleep Disturbance was 57, and Sleep Impairment was 57., Conclusions: The current results support the feasibility and accuracy of PROMIS CAT and its potential for use in routine ambulatory cancer care. Future research will assess feedback of these data to clinicians and evaluate effects on earlier identification of and intervention for these problems. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2906-2917. © 2016 American Cancer Society., (© 2016 American Cancer Society.)

Background: Health utility (HU) scores play an essential role in pharmacoeconomic analyses. Routine clinical administration of the EuroQol-5 Dimensions (EQ-5D) can allow for HU and health related quality of life (HRQOL) assessments in the real-world setting., Objectives: The primary goals of this study were to evaluate whether patients were willing to complete the EQ-5D instrument on a routine basis and which clinical or demographic factors influence this willingness., Methods: 618 adult cancer survivors across multiple cancer disease sites at the Princess Margaret Cancer Centre completed an acceptability survey after completing the EQ-5D instrument., Results: The mean (SD) EQ-5D score was 0.81 (0.15). Among those surveyed, 88% reported that the EQ-5D was easy to complete. 91% took under 5 minutes and 88% were satisfied with its length. 85% were satisfied with the types of questions asked on the EQ-5D. Importantly, 92% reported that they would complete the EQ-5D, even if it were used solely for research purposes; 73% agreed with the notion of completing it regularly at their clinic visits. Patients with lower EQ-5D scores (p=0.0006), and non-Caucasians (p=0.0024; 60% willing) were less willing to complete the instrument on a regular basis. Curability of tumour, disease site, age, and gender did not influence willingness., Conclusions: The majority of cancer patients across disease sites are willing to complete the EQ-5D instrument regularly, even if it were solely for research purposes, but up to 39% declined participation in the first place.

Purpose: Cancer-related fatigue (CRF) is the most prevalent and distressing symptom among cancer patients and survivors. However, research on its prevalence and related disability in the post-treatment survivorship period remains limited. We sought to describe the occurrence of CRF within three time points in the post-treatment survivorship trajectory., Methods: A self-administered mail-based questionnaire which included the Functional Assessment of Cancer Therapy-Fatigue (FACT-F) and the World Health Organisation Disability Assessment Schedule 2.0 was sent to three cohorts of disease-free breast, prostate or colorectal cancer survivors (6-18 months; 2-3 years; and 5-6 years post-treatment). Clinical information was extracted from chart review. Frequencies of significant fatigue by diagnostic group and time cohorts were studied and compared. Multivariate logistic regressions were conducted to examine the associations between CRF and demographic, clinical, and psychosocial variables., Results: One thousand two hundred ninety-four questionnaire packages were returned (63 % response rate). A total of 29 % (95 % CI [27 % to 32 %]) of the sample reported significant fatigue (FACT-F ≤34), and this was associated with much higher levels of disability (p < 0.0001). Breast (40 % [35 % to 44 %]) and colorectal (33 % [27 % to 38 %]) cancer survivors had significantly higher rates of fatigue compared with the prostate group (17 % [14 % to 21 %]) (p < 0.0001). Fatigue levels did not differ between the three time cohorts. The main factors associated with CRF included physical symptom burden, depression, and co-morbidity (AUC, 0.919 [0.903 to 0.936])., Conclusions: Clinically relevant levels of CRF are present in approximately 1/3 of cancer survivors up to 6 years post-treatment, and this is associated with high levels of disability., Implications for Cancer Survivors: Clinicians need to be aware of the chronicity of CRF and assess for it routinely in medical practice. While there is no gold standard treatment, non-pharmacological interventions with established efficacy can reduce its severity and possibly minimize its disabling impact on patient functioning. Attention must be paid to the co-occurrence and need for possible treatment of depression and other co-occurring physical symptoms as contributing factors.