Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations.

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.

Relationship between income and concerns about physical changes and help-seeking by older adult cancer survivors: a secondary analysis.

OBJECTIVE: Globally, the number of older adults surviving cancer is anticipated to grow rapidly over the next decades. Cancer and its treatment can leave survivors with a myriad of challenges including physical changes which impact independence and quality of life. This project explored the relationship of income level with concerns and help-seeking for physical changes following treatment in older Canadian survivors of cancer. METHODS: A Canada-wide survey of community-dwelling survivors of cancer explored their experiences with survivorship care one to three years following completion of treatment. A secondary trend analysis examined the relationship of income with older adults' level of concern and help-seeking experiences regarding physical consequences they attributed to their cancer treatment. RESULTS: In total, 7,975 people aged 65 years and older who survived cancer responded to the survey, of whom 5,891 (73.9%) indicated annual household income. Prostate (31.3%), colorectal (22.7%) and breast (21.8%) cancer accounted for the majority of respondents. Of those who reported household income data, over 90% wrote about the impact of physical changes following treatment, their concerns about the changes, and whether they sought help for their concerns. The most frequently identified physical challenge was fatigue (63.7%). Older survivors with low annual household incomes of less than $CA25,000 reported the highest levels of concern about multiple physical symptoms. 25% or more of the survey respondents across all income levels reported difficulty finding assistance for their concerns about the physical challenges, especially in their local communities. CONCLUSION: Older survivors of cancer can experience a range of physical changes, amenable to intervention by physical therapy, yet experience challenges obtaining relevant help. Those with low income are more severely affected, even within a universal healthcare system. Financial assessment and tailored follow-up are recommended.

The Acceptability of Behavioural Swallowing Interventions for Head and Neck Cancer Patients During Radiotherapy: A Qualitative Study Exploring Experiences of Clinical Trial Speech-Language Pathologists.

The PRO-ACTIVE randomized clinical trial offers 3 swallowing therapies to Head and Neck Cancer (HNC) patients during radiotherapy (RT) namely: reactive, proactive low- ("EAT-RT" only) and high-intensity ("EAT-RT + exercises"). Understanding the experiences of the trial Speech-Language Pathologists (SLPs) will be useful to inform clinical implementation. This study assessed SLP opinions of acceptability and clinical feasibility of the 3 trial therapies. 8 SLPs from 3 Canadian PRO-ACTIVE trial sites participated in individual interviews. Using a qualitative approach, data collection and thematic analysis were guided by the Theoretical Framework of Acceptability. Member checking was conducted through a follow-up focus group with willing participants. Seven themes were derived: intervention coherence, burden, barriers/facilitators, self-efficacy, attitude, ethicality, and perceived effectiveness. SLPs felt all 3 therapies had potential benefit yet perceived more advantages of proactive therapies compared to reactive. Compared to exercises, SLPs particularly endorsed the EAT-RT component. A major barrier was keeping patients motivated, which was impacted by acute toxicity and sometimes conflicting instructions from the healthcare team. Strategies utilized by to overcome barriers included: scaling exercises and/or diet up/down according to the changing patient needs and communicating therapy goals with healthcare team. A model was derived describing the perceived acceptability of the swallowing therapies according to SLPs, based on the interconnection of main themes. Proactive therapies were perceived as more acceptable to trial SLPs, for facilitating patient engagement. The perceived acceptability of the swallowing therapies was related to seven interconnected aspects of providers' experience. These findings will inform the implementation and potential uptake of the PRO-ACTIVE swallowing therapies in clinical practice.

Exploring the Acceptability of Behavioral Swallowing Interventions for Head and Neck Cancer Patients During Radiotherapy: A Qualitative Study of Patients' Experience.

The PRO-ACTIVE randomized clinical trial offers 3 swallowing therapies to Head and Neck Cancer (HNC) patients during radiotherapy namely: reactive, proactive low- ("EAT-RT" only), and high-intensity ("EAT-RT + exercises"). Understanding the perceived acceptability of these interventions is important to inform eventual implementation into clinical practice. This study explored patients' perspectives using qualitative methodology. At 2 Canadian PRO-ACTIVE trial sites, 24 trial participants were recruited for individual semi-structured interviews, representing each of the 3 trial arms. Data collection and thematic analysis were guided by the Theoretical Framework of Acceptability (TFA). Member checking was conducted through follow-up focus groups. Seven themes were derived reflecting the TFA constructs. Overall, regardless of trial arm, patients reported a positive experience with therapy. Patients identified benefits of EAT-RT therapy, reporting that it provided meaningful feedback on diet progress and supported goal setting for oral intake. Patients who received proactive therapies valued the opportunity to set expectations early, build mealtime routine iteratively over time, and have an extended engagement with the SLP. Regardless of trial arm, patients agreed proactive therapy aligned with what they think is best and that therapy intensity should accommodate individual needs. This study identified the value to HNC patients of receiving swallowing interventions during RT and setting realistic expectations around swallowing. Compared to reactive care, proactive therapies were perceived helpful in consolidating habits early, establishing realistic expectations around swallowing and building an extended rapport with the SLP. These findings will inform the implementation of proactive versus reactive swallowing therapies in clinical practice.

Challenges of Survivorship for Older Adults Diagnosed with Cancer.

PURPOSE OF REVIEW: The purpose of this brief review is to highlight significant recent developments in survivorship research and care of older adults following cancer treatment. The aim is to provide insight into care and support needs of older adults during cancer survivorship as well as directions for future research. RECENT FINDINGS: The numbers of older adult cancer survivors are increasing globally. Increased attention to the interaction between age-related and cancer-related concerns before, during, and after cancer treatment is needed to optimize outcomes and quality of life among older adult survivors. Issues of concern to older survivors, and ones associated with quality of life, include physical and cognitive functioning and emotional well-being. Maintaining activities of daily living, given limitations imposed by cancer treatment and other comorbidities, is of primary importance to older survivors. Evidence concerning the influence of income and rurality, experiences in care coordination and accessing services, and effectiveness of interventions remains scant for older adults during survivorship. There is a clear need for further research relating to tailored intervention and health care provider knowledge and education. Emerging issues, such as the use of medical assistance in dying, must be considered in this population.

Exercise counselling and referral in cancer care: an international scoping survey of health care practitioners' knowledge, practices, barriers, and facilitators.

PURPOSE: Evidence supports the role of prescribed exercise for cancer survivors, yet few are advised to exercise by a healthcare practitioner (HCP). We sought to investigate the gap between HCPs' knowledge and practice from an international perspective. METHODS: An online questionnaire was administered to HCPs working in cancer care between February 2020 and February 2021. The questionnaire assessed knowledge, beliefs, and practices regarding exercise counselling and referral of cancer survivors to exercise programs. RESULTS: The questionnaire was completed by 375 participants classified as medical practitioners (42%), nurses (28%), exercise specialists (14%), and non-exercise allied health practitioners (16%). Between 35 and 50% of participants self-reported poor knowledge of when, how, and which cancer survivors to refer to exercise programs or professionals, and how to counsel based on exercise guidelines. Commonly reported barriers to exercise counselling were safety concerns, time constraints, cancer survivors being told to rest by friends and family, and not knowing how to screen people for suitability to exercise (40-48%). Multivariable logistic regression models including age, gender, practitioner group, leisure-time physical activity, and recall of guidelines found significant effects for providing specific exercise advice (χ2(7) = 117.31, p < .001), discussing the role of exercise in symptom management (χ2(7) = 65.13, p < .001) and cancer outcomes (χ2(7) = 58.69, p < .001), and referring cancer survivors to an exercise program or specialist (χ2(7) = 72.76, p < .001). CONCLUSION: Additional education and practical support are needed to equip HCPs to provide cancer survivors with exercise guidelines, resources, and referrals to exercise specialists.

The use of patient-reported outcomes in routine cancer care: preliminary insights from a multinational scoping survey of oncology practitioners.

BACKGROUND: There exists scant evidence on the optimal approaches to integrating patient-reported outcomes (PROs) in clinical practice. This study gathered oncology practitioners' experiences with implementing PROs in cancer care. METHODS: Between December 2019 and June 2020, we surveyed practitioners who reported spending > 5% of their time providing clinical care to cancer patients. Respondents completed an online survey describing their experiences with and barriers to using PROs in clinical settings. RESULTS: In total, 362 practitioners (physicians 38.7%, nurses 46.7%, allied health professionals 14.6%) completed the survey, representing 41 countries (Asia-Pacific 42.5%, North America 30.1%, Europe 24.0%, others 3.3%). One quarter (25.4%) identified themselves as "high frequency users" who conducted PRO assessments on > 80% of their patients. Practitioners commonly used PROs to facilitate communication (60.2%) and monitor treatment responses (52.6%). The most commonly reported implementation barriers were a lack of technological support (70.4%) and absence of a robust workflow to integrate PROs in clinical care (61.5%). Compared to practitioners from high-income countries, more practitioners in low-middle income countries reported not having access to a local PRO expert (P < .0001) and difficulty in identifying the appropriate PRO domains (P = .006). Compared with nurses and allied health professionals, physicians were more likely to perceive disruptions in clinical care during PRO collection (P = .001) as an implementation barrier. CONCLUSIONS: Only a quarter of the surveyed practitioners reported capturing PROs in routine clinical practice. The implementation barriers to PRO use varied across respondents in different professions and levels of socioeconomic resources. Our findings can be applied to guide planning and implementation of PRO collection in cancer care.

Screening for distress in community settings.

Purpose: This project was designed to develop, refine and field-test a distress screening approach with survivors accessing community-based cancer support agencies. Methods: The project was conducted in phases including a literature review and focus groups with cancer survivors and community agency staff. Data were gathered to lay the foundation for building a subsequent development and implementation of a new screening approach suitable for community-based cancer support agencies to use in identifying psychosocial distress in their clients. Results: Standardized questionnaires used for distress screening approaches in clinical settings were not seen by cancer survivors as appropriate for community-based cancer support settings. A new screening approach was designed and implemented based on input from cancer survivors and staff in community-based agencies. The tool used in the distress screening approach focused on problems relevant to individuals in the community setting. If problems were identified, staff followed tailored care pathways to resolve them. Both patients and staff found the screening approach useful for quickly pinpointing problems and avenues for dealing with the issues. Conclusions: Screening for distress approaches can be useful in a community-based cancer support setting to identify individuals who are at greater risk for experiencing difficulties. Data from screening can be useful for agencies to report on their service effectiveness.

Coping style and typology of perceived social support of male partners of women with breast cancer.

This article reports on one component of an exploratory qualitative study, namely male partners' coping style of self-reliance, and the perceived social support that these partners relied upon to cope with their wife's breast cancer. Data were drawn from a larger study designed to explore male partners' perceived needs and the services they preferred to address these needs following their wife's diagnosis of breast cancer. The 27 male partners participating in this study were significantly affected by their wife's breast cancer. To cope, they relied on a coping style of self-reliance, drawing upon their own internal resources (self reliance) augmented by available informal social support to support themselves, their wife, and their family, and to manage the disease-, individual-, couple- and family-related stressors in their lives. Attention needs to be given to the self-support and social support needs of spouses to address unmet needs and facilitate coping. As the main providers of support for their wives, partners are in the unique position of needing support as well as providing it.

Exploring nursing engagement in providing virtual care to cancer patients in Canada.

As the world struggled with the COVID-19 pandemic, the provision of cancer care, along with all health services, moved more intentionally toward using virtual strategies. The implementation of virtual care had to happen quickly in an effort to provide safe care for individuals and avoid prolonged delays in patient care. Since then, the practice of virtual care and the involvement of oncology nurses in its delivery has evolved. However, there remains little evidence to guide oncology nurses in virtual care and establish best practices. A virtual workshop was held as part of the 2021 Annual Conference of the Canadian Association of Nurses in Oncology to explore the types of involvement oncology nurses have with virtual care, the barriers and facilitators of virtual care, and suggestions for the design of practice standards to guide oncology nurses in this arena of practice. This paper reports the findings of the workshop and shared implications for future priorities.

Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Exploring the impact of physical, emotional, and practical changes following treatment on the daily lives of cancer survivors.

OBJECTIVE: To understand the impact of changes following treatment on daily lives of cancer survivors. METHODS: A national survey was conducted with cancer survivors about experiences with follow-up care. The survey included open-ended questions about changes in daily lives following treatment. A qualitative descriptive analysis was completed with the written comments. RESULTS: A total of 4575 individuals (33.8% of survey respondents) wrote about impact of changes following cancer treatment. Sixty-one percent were females. Breast (35.2%) and colorectal (17.7%) cancer accounted for largest respondent groups. Survivors identified a myriad of physical, emotional, and practical changes. Impacts on daily living occurred from changes in each domain with change in one area impacting others as well. Predominant issues included physical limitations, mood swings, fear of recurrence, return to work, and financial burdens. IMPLICATIONS: Cancer survivors can experience a range of changes following cancer treatment that impact on their daily lives. Individualized assessment and tailored plans for follow-up are recommended.

Perspectives of survivors: Coping with lifestyle adjustments following cancer diagnosis and treatment.

Adjusting to a new "normal"! When I finished treatments, I thought I would be "over the top" happy... but I wasn't. It felt good to be done of course, but I found myself being in limbo. When I was undergoing treatment, people would ask how I was doing. When I was done nobody really asked anymore. It's like they think "Hey, you beat it... now you can go back to your everyday life". But it's not like that!! Cancer changes you! The trauma of a cancer diagnosis changes a lot of things, even if, in the end, everything has gone really well. (#2048 Q33 ONT).

Living with peripheral neuropathy following completion of cancer treatment.

I started to realize the side effects of the treatment. The main challenge is that all fingers and toes are numbed with poor sense of cold and hot. My hands lost the ability to grasp and hold things. My feet feel I walk on air all the time. I have to learn how to balance myself in walking and learn how to grasp things with hands. (#1362 Q33 MAN).

Looking within and beyond our borders: Exemplars of international initiatives involving CANO/ACIO members.

The Canadian Association of Nurses in Oncology/Association Canadienne des Infirmières en Oncologie (CANO/ACIO) is committed to being an influencing force globally. Its role in international work has been an important aspect of the Strategic Plan over the past five years. Beginning in 2015, following an environmental scan, literature review, and member input, the "Framework for International Engagement, Exchange, Influence and Partnerships" was articulated. This article focuses on experiences and exemplars of work in international settings that focus on symptom management, supportive care, education, and the integration of the CANO standards and competencies into other settings. Exemplars from East Africa (Rwanda and Kenya) and Central America (Costa Rica) in which CANO/ACIO members were involved will be highlighted.

Exploring the perspectives of patients about their care experience: identifying what patients perceive are important qualities in cancer care.

INTRODUCTION: Delivering person-centered care begins with understanding perspectives of individuals who are recipients of care about their experiences and what constitutes a "positive" experience. METHODS: This project explored views of individuals with cancer regarding their care experiences and identified aspects of care patients thought were important through a qualitative analysis of data from the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). Permission was obtained from seven Canadian provinces to access de-identified written comments to a final open-ended question on the survey: Is there anything else you would like to tell us about your cancer care experience? The descriptive qualitative analysis was guided by two questions: (1) what is the nature of the written comments and (2) what are key ideas expressed about care experiences? Key ideas were collated across provinces to identify significant themes within the national sample. RESULTS: The sample included comments from 6232 individuals. A total of 42.5% comments were positive, 29.7% were negative, and 19.8% were mixed. Four broad themes were identified from the comments: (1) characteristics of a "positive" experience, (2) personal care, (3) interaction with health care providers, and (4) service delivery. Respondents cited being treated as a person with respect and dignity, clear communication, access to relevant and timely information, and care that takes their needs into account as important aspects. Communication, consistency, and ongoing interactions with staff were highlighted as essential elements of a positive experience, yet areas where improvements in care are necessary. CONCLUSION: Patients reported a range of aspects that contribute to positive and negative care experiences which can be used to guide quality improvement initiatives in cancer centers. Results underscore the importance of having data collection systems in place to ensure agencies and providers have timely feedback about patients' experiences and concerns in order to provide responsive and individualized care.

Financial toxicity associated with a cancer diagnosis in publicly funded healthcare countries: a systematic review.

PURPOSE: Financial toxicity related to cancer diagnosis and treatment is a common issue in developed countries. We seek to systematically summarize the extent of the issue in very high development index countries with publicly funded healthcare. METHODS: We identified articles published Jan 1, 2005, to March 7, 2019, describing financial burden/toxicity experienced by cancer patients and/or informal caregivers using OVID Medline Embase and PsychInfo, CINAHL, Business Source Complete, and EconLit databases. Only English language peer-reviewed full papers describing studies conducted in very high development index countries with predominantly publicly funded healthcare were eligible (excluded the USA). All stages of the review were evaluated in teams of two researchers excepting the final data extraction (CJL only). RESULTS: The searches identified 7117 unique articles, 32 of which were eligible. Studies were undertaken in Canada, Australia, Ireland, UK, Germany, Denmark, Malaysia, Finland, France, South Korea, and the Netherlands. Eighteen studies reported patient/caregiver out-of-pocket costs (range US$17-US$506/month), 18 studies reported patient/caregiver lost income (range 17.6-67.3%), 14 studies reported patient/caregiver travel and accommodation costs (range US$8-US$393/month), and 6 studies reported financial stress (range 41-48%), strain (range 7-39%), or financial burden/distress/toxicity among patients/caregivers (range 22-27%). The majority of studies focused on patients, with some including caregivers. Financial toxicity was greater in those with early disease and/or more severe cancers. CONCLUSIONS: Despite government-funded universal public healthcare, financial toxicity is an issue for cancer patients and their families. Although levels of toxicity vary between countries, the findings suggest financial protection appears to be inadequate in many countries.

Advances and future directions in the use of mobile health in supportive cancer care: proceedings of the 2019 MASCC Annual Meeting symposium.

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.

Improving the outcomes for cancer survivors in Canada: An interactive approach to competency development using the newly released CANO/ACIO Survivorship Manual.

CANO/ACIO has long recognized the important role oncology nurses play in improving outcomes for cancer survivors. To ensure oncology nurses have easy access to the updated evidence, as a basis for their practice, CANO/ACIO undertook the important work of updating the CANO/ACIO self-learning modules on survivorship and creating several new ones. This article highlights the current gaps in care experienced by cancer survivors in the months and years after their cancer treatments are completed and the important contributions that nurses can have in improving the quality of survivorship care. It also provides an interactive approach to competency development using the newly revised and rereleased Pan-Canadian Survivorship Manual.

Returning to work after cancer: Survivors', caregivers', and employers' perspectives.

OBJECTIVE: The Return to Work Initiative was launched to build a comprehensive understanding of issues, needs, current resources, and available supports for Canadian cancer survivors returning to work as the basis for developing a national action plan. METHODS: This Initiative drew on perspectives of stakeholders through a survey and consultations with cancer survivors and caregivers to learn about challenges regarding return to work and interviews and focus groups with workplace representatives and employers to determine issues encountered in the workplace. Common perspectives across stakeholder groups were identified. RESULTS: Cancer survivors (n = 410) described reduction in income, positive and negative experiences returning to work, and work-related issues regarding side effects. Caregivers (n = 60) described loss of concentration and productivity, stress, and lack of support from coworkers. Employer representatives (n = 68) revealed challenges for managers knowing how best to support cancer survivors as there are few of them of which they are aware. All stakeholders agreed that returning to work for cancer survivors is challenging. Multiple strategies are needed to achieve success: in-depth understanding of the issues, consideration of accommodation, communication among stakeholders, education, resources, and financial support. CONCLUSIONS: The work provided a foundation for making decisions about how to proceed to improve return to work for Canadian cancer survivors.