Perspectives of Cancer Survivors with Low Income: A Content Analysis Exploring Concerns, Positive Experiences, and Suggestions for Improvement in Survivorship Care.

The number of cancer survivors in Canada has reached 1.5 million and is expected to grow. It is important to understand cancer survivors' perspectives about the challenges they face after treatment is completed. Many factors create barriers to accessing assistance, and limited income may be a significant one. This study is a secondary analysis of data from a publicly available databank (Cancer Survivor Transitions Study) regarding the experiences of Canadian cancer survivors. The goal was to explore major challenges, positive experiences, and suggestions for improvement in survivorship care for low-income Canadian cancer survivors one to three years following treatment. A total of 1708 survey respondents indicated a low annual household income (<$25,000 CD). A content analysis was performed utilizing written comments to open-ended questions. The major challenges respondents described focused on physical capacity limits and treatment side effects; positive experiences emphasized support and attentive care; and suggestions for improvements highlighted the need for better support, information about self-care and side effect management, and timely follow-up care. The relationships between household income and the management of survivors' physical, emotional, and practical concerns require consideration. The design of follow-up care plans, programs, services, and financial assessments of patients may prepare survivors for predictable issues and costs in their transition to survivorship.

Cancer Survivors Living in Rural Settings: A Qualitative Exploration of Concerns, Positive Experiences and Suggestions for Improvements in Survivorship Care.

In Canada, the number of cancer survivors continues to increase. It is important to understand what continues to present difficulties after the completion of treatment from their perspectives. Various factors may present barriers to accessing help for the challenges they experience following treatment. Living rurally may be one such factor. This study was undertaken to explore the major challenges, positive experiences and suggestions for improvement in survivorship care from rural-dwelling Canadian cancer survivors one to three years following treatment. A qualitative descriptive analysis was conducted on written responses to open-ended questions from a national cross-sectional survey. A total of 4646 individuals living in rural areas responded to the survey. Fifty percent (2327) were male, and 2296 (49.4%) were female; 69 respondents were 18 to 29 years (1.5%); 1638 (35.3%) were 30 to 64 years; and 2926 (63.0%) were 65 years or older. The most frequently identified major challenges (n = 5448) were reduced physical capacity and the effects of treatment. Positive experiences included family and friend support and positive self-care practices. The suggestions for improvements focused on the need for better communication and information about self-care, side effect management, and programs and services, with more programs available locally for practical and emotional support.

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.

Cancer survivors 75 years and older: physical, emotional and practical needs.

OBJECTIVES: To describe physical, emotional and practical concerns and access to help of Canadian cancer survivors aged 75+ years following treatment. METHODS: A survey was designed to identify concerns and access to help across three supportive care domains for cancer survivors 1-3 years post-treatment. Random samples were drawn from 10 provincial cancer registries. Survey packages were mailed to 40 790 survivors with option to reply by mail or online in French or English. Descriptive analysis was conducted. RESULTS: In total, 3274 (25%) survivors aged 75+ years responded to the survey. Fifty-five per cent were men, 72% had not experienced metastatic spread and 75% reported comorbid conditions. Eighty-one per cent reported experiencing at least one physical concern, 63% experienced at least one emotional concern and 30% experienced at least one practical concern. The most commonly reported concerns were for two physical changes (fatigue 62% and bladder/urinary problems 39%) and one emotional change (anxiety/fear of recurrence 53%). More than 50% did not receive assistance for 15 concerns across the three domains. The most frequently cited reason for not seeking help for a concern was that they were told it was normal and they did not think anything could be done. Unmet needs existed for all physical, emotional and practical changes ranging from 41% to 88% of respondents. CONCLUSIONS: Many older adults are at risk for experiencing physical, emotional and practical concerns following cancer treatment yet are not obtaining help. Action is needed for early identification of these individuals to mitigate the impact of unmet needs for older cancer survivors.

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.

Relationships between Canadian adult cancer survivors' annual household income and emotional/practical concerns, help-seeking and unmet needs.

The objective of this study was to explore the relationship among income and emotional/practical concerns, help-seeking and unmet needs for cancer survivors aged 18 to 64 years one to three years after treatment. A cross-sectional survey was mailed in 2016 to 40,790 survivors randomly selected from 10 Canadian provincial cancer registries. Thirty-three percent responded. A trend analysis was conducted for survivors most likely to be in the workforce exploring the relationship across four income levels and emotional/practical concerns, whether help was sought for identified concerns, and whether help was received. A total of 4,264 respondents, aged 18-64, provided useable data with breast (34.4%) and colo-rectal (15.0%) accounting for the primary cancer type and 32.0% reporting annual household incomes of <$50,000. More than 94% of respondents indicated having emotional or practical concerns. Between one-third and one-half of the respondents sought help for their concerns and, of those, between one-third and one-half experienced difficulty finding help or did not obtain assistance. Significant trends across income categories indicated greater percentages of those in lower income categories experienced emotional and practical concerns, rated their concerns as 'big', sought help, and had difficulty finding help to address their concerns. Clearly adult cancer survivors experience emotional and practical concerns. Healthcare professionals have important roles monitoring these concerns and connecting those who desire help to relevant services. Opportunities should be given to individuals, regardless of income level, to indicate if they have concerns and if they would like assistance.

Exploring the relationships between income and emotional/practical concerns and help-seeking by older adult cancer survivors: A secondary analysis.

PURPOSE: The number of older cancer survivors is growing rapidly and expected to double through the next decade. Survivors can face challenges from treatment as well as other co-morbid conditions which may influence quality of living and generate distress. Understanding more about factors influencing whether older cancer survivors receive the help they desire is important for cancer program planning. The purpose of this analysis was to understand relationships between income and emotional/practical concerns, help-seeking experiences and unmet needs of adults 65+ years one to three years following cancer treatment. MATERIALS AND METHODS: A survey was conducted with randomly selected Canadian cancer survivors about their survivorship care. Drawing from these publicly available data, this secondary analysis examines prevalence of concerns, help-seeking, receipt of help, reasons for not seeking help, responses to information questions, and overall unmet needs for trends across income groups. RESULTS: 7975 respondents 65+ years responded, of which the 5891 (73.9%) indicating annual household income were analyzed. Over 80% responded to questions regarding emotional/practical concerns following treatment with the largest proportions reporting emotional concerns for anxiety/fear of cancer returning (63%) and depression (49%), and practical concerns regarding transportation for appointments (33%) and paying healthcare bills (31%). Individuals with household incomes <$25,000 reported higher levels of concern than other income groups and higher proportions sought assistance for their concerns. Across income levels, 20% reported difficulty finding assistance to address their concerns. DISCUSSION: Older cancer survivors across all income categories reported emotional/practical concerns, lack of information about these issues, and unmet needs regarding both emotional and practical concerns. Many encountered challenges obtaining help with those in lower income categories more severely affected despite Canada's universal health care system. Financial burden ought to be assessed with older survivors on an on-going basis to ensure relevant intervention.

Physical, emotional, and practical concerns, help-seeking and unmet needs of rural and urban dwelling adult cancer survivors.

PURPOSE: This study explores the influence of residency location on the experiences of cancer survivors. The influence of where individuals live during cancer screening, diagnosis, and treatment has been described in various countries. However, understanding the context of residency on experiences during survivorship has received less attention. METHODS: A survey was designed to assess experiences of cancer survivors transitioning to follow-up care. Descriptive statistics were used to contrast physical, emotional, and practical concerns, help-seeking, and unmet needs of rural and urban dwelling respondents. Difference in proportions of greater than 5% were considered clinically meaningful. RESULTS: In total, 13,319 respondents completed the survey of which 4646 met the criteria for rural dwelling (e.g., living in villages or towns with 10,000 or less residents or on an acreage, ranch, or farm). Proportions of respondents in rural and urban groups were similar in terms of level of concerns. Differences were observed for help seeking regarding return to work and for difficulty in obtaining help regarding taking care of children and other family members, changes in relationships with family, friends and co-workers, and getting to and from appointments. Unmet needs existed across all domains and were similar in both groups. A larger proportion of rural dwelling respondents experienced unmet needs regarding return to work. CONCLUSIONS: [implications]: High proportions of cancer survivors experienced concerns following cancer treatment. However, rural dwelling survivors were more challenged in obtaining help for selected concerns. Implications exist for development of community-based support services in rural settings.

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.

Improving survivorship care: Perspectives of cancer survivors 75 years and older.

PURPOSE: This work describes perspectives of older adult cancer survivors about improvements that should be considered during the early period of survivorship. Findings will be useful in program development of age-appropriate services following completion of cancer treatment for older adults. METHODS: A national survey was conducted across ten Canadian provinces to understand follow-up experiences of cancer survivors one to three years post-treatment. The survey included open-ended questions enabling respondents to offer insight into their experiences. This publication presents analysis of responses from older adults (75+ years) about suggestions for improving survivorship care. RESULTS: In total, 3274 older adults (75+ years) responded to the survey and 1424 responded to the question about improvements. Fifty-five percent of the older adults were male, 28% had experienced metastatic disease and 75% reported comorbid conditions. A total of 640 respondents offered 932 suggestions in the areas of service delivery (n = 763, 81.9%), support (n = 108, 11.6%), and practical assistance (n = 61, 6.5%). Improvements in information/communication (n = 291) and follow-up care (n = 180) accounted for the highest number of suggestions regarding service delivery. Thematic analysis revealed three key messages about improvement: 'offer me needed support', 'make access easy for me', and 'show me you care'. CONCLUSION: Suggestions for improvement in survivorship care by older adults treated for cancer emphasize need for changes in the approaches taken by health care providers in interactions and organization of care delivery. Proactive provision of information, detailed schedules for follow-up care, and ease of access to post-treatment care are needed.

Adolescent and Young Adult Perspectives on Challenges and Improvements to Cancer Survivorship Care: How Are We Doing?

Purpose: The purpose was to review main challenges experienced by adolescent and young adult (AYA) cancer survivors (18-34 years) during transition to survivorship and their suggestions regarding improvements needed in care. Methods: A national survey was conducted to identify experiences with follow-up care 1-3 years after cancer treatment. The survey included open-ended questions for respondents to add topics of importance and details for deeper insight. This study presents analysis of open-ended questions about main challenge faced by AYA respondents and their suggestions for improvements in care. Results: Of 575 AYA survey respondents, 497 (86.4%) commented regarding main challenges. Twenty-one indicated that they had no challenges. Of those reporting challenges, 209 (43.9%) named one challenge, 267 (56.1%) identified more than one. In total, 955 challenges were identified with the most frequently cited being physical (n = 462, 48.4%) and psychological (n = 234, 24.5%). A total of 391 survivors wrote 679 suggestions about improvements in care with the majority (n = 248, 69.4%) offering more than one. The most frequently cited suggestions included information/communication (n = 191, 29.8%), naming a range of topics for which information was desired, and access to post-treatment therapies/services (n = 164, 25.5%) such as counseling, physiotherapy, and occupational therapy. The overarching theme was, "I need follow-up care that fits me." Conclusions: AYA cancer survivors are diverse and face unique challenges following treatment, which can have life-long implications and impede their recovery. Personalized follow-up care is highly recommended by these survivors.

Main challenges in survivorship transitions: Perspectives of older adults with cancer.

OBJECTIVES: To describe main challenges experienced by older adults (75+ years) following primary cancer treatment as a basis for development of age-appropriate survivorship care. MATERIAL AND METHODS: A national survey was conducted across ten Canadian provinces to identify experiences with follow-up for cancer survivors one to three years post-treatment. The survey included open-ended questions for respondents to add details that offered deeper insight into their experiences. This publication presents analysis of responses from older adults (75+ years) about the main challenge they faced in transitioning to survivorship. RESULTS: In total, 3274 older adults (75+ years) responded to the survey and 2057 responded to the main challenge question. Fifty-five percent were male, 72% had not experienced metastatic disease and 75% reported comorbid conditions. The 1571 (48.0%) respondents reporting at least one main challenge described 2426 challenges categorized as physical, emotional, practical, lifestyle adjustments, health care delivery, and relationships/support. Physical challenges were identified most frequently (68.2%, n = 1655) including physical capacity (35.8%), symptoms/side effects (32.7%), and changes in bodily function/appearance (31.3%). Thematic analysis revealed three themes: 'getting back on my feet', 'adjusting to the changes', and 'finding the support I needed'. CONCLUSION: This work highlights gaps in early cancer survivorship for older adults and raises concerns about unexamined ageism within the Canadian cancer care system. A need for comprehensive geriatric assessments is evident before and toward the end of primary treatment to individualize care plans. Proactive provision of information about managing changes from treatment, offered in meaningful multi-modal ways, is important.

Exploring the reasons cancer survivors do not seek help for their concerns: a descriptive content analysis.

PURPOSE: To understand reasons why adult cancer survivors do not seek assistance as they transition from the end of cancer treatment to follow-up care. Understanding these reasons should inform survivorship care, help reduce the burden of suffering and increase quality of life for survivors. METHODS: A national survey was conducted in collaboration with ten Canadian provinces to identify unmet needs and experiences with follow-up for cancer survivors between one and 3 years post-treatment. The survey included open-ended questions to allow respondents to add topics of importance and details that offered a deeper insight into their experiences. This publication presents the analysis of the quantitative data and open-ended responses regarding reasons why the adult cancer population does not seek help with their concerns. RESULTS: In total, 13 319 respondents answered the question about seeking help. 87% had a physical concern of which 76% did not seek help; 77% had an emotional concern of which 82% did not seek help; and 45% had a practical concern of which 71% did not seek help. Frequently identified reasons for not seeking help included being told it was normal and not thinking anything could be done, not wanting to ask, not thinking services were available, handling it on their own and not thinking it was serious enough to seek help. CONCLUSIONS: Survivors have multiple reasons for not seeking help for their concerns. These findings can be useful to healthcare providers in proactively identifying and addressing the needs of these survivors.

Cancer survivor's perspectives on the major challenge in the transition to survivorship.

OBJECTIVES: To understand cancer survivors' perspectives regarding the major challenge in transitioning from cancer treatment to follow-up care. Identification of major issues should inform survivorship care and help reduce suffering. METHODS: A national survey was conducted to identify experiences with follow-up for cancer survivors one to three years post-treatment. The survey included open-ended questions for respondents to add topics of importance and details that offer deeper insight into their experiences. This publication presents analysis of the open-ended question about the major challenge faced by adult cancer population. RESULTS: Of 13,534 unique adult survey respondents, 8706 respondents identified major challenges. Of those reporting challenges, 4727 (54.3 %) named a single challenge but 3979 (45.7 %) identified more than one. In total, 15,351 challenges were identified. Responses to open-ended questions are summarized under significant themes: major concerns are often more than singular issues; recovery and fear of recurrence; and information needs. CONCLUSIONS AND PRACTICE IMPLICATIONS: Results indicate significant numbers of adult survivors have multiple concerns about physical, emotional, and practical issues but are not receiving assistance and/or appropriate information to help manage these concerns. It is important to determine how health care can be proactive in identifying and addressing needs of survivors.

Positive Cancer Experiences: Perspectives From Cancer Survivors.

The purpose was to review the perspectives of cancer survivors about what they perceive constitutes positive cancer experiences. A national survey was conducted in collaboration with 10 Canadian provinces to identify experiences and unmet needs for cancer survivors between 1 and 3 years of posttreatment. The survey included open-ended questions designed to allow the respondents to add topics and details of importance. This publication presents the analysis of quantitative data and open-ended questions regarding cancer survivors' perspectives about positive experiences and gaps in care during their cancer journey. Of the 13 534 unique adult survey respondents, 7794 (57.6%) responded to the positive experiences question and 6434 (47.5%) to the question about gaps in care. Elements of positive experiences included the compassionate health care workers, maintaining a positive outlook and the support of family and friends. Gaps in care included a lack of access to services, information, and support. Respondents were able to identify positive aspects of their cancer experiences and where improvements were needed. These findings assist in determining how health care professionals can address the needs of cancer patients based on what survivors have identified as helpful.

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.

Toward the development of a comprehensive cancer experience measurement framework.

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.

Reflections on the implementation of screening for distress (sixth vital sign) in Canada: key lessons learned.

BACKGROUND: Accreditation bodies in the USA, the UK, and Europe have mandated that jurisdictions regularly screen patients for distress. While these requirements have been in place for some time, recent reports suggest that facilities still struggle to overcome implementation barriers. In Canada, a Screening for Distress (the sixth vital sign) Initiative was implemented in eight cancer treatment facilities in seven provinces. With national support and coordination from the Canadian Partnership Against Cancer, the initiative's primary goal was to provide timely and appropriate response to cancer patients' distress to improve the patient experience. Patient experience is defined as the sum of an individual's perceptions, expectations and interactions related to his or her health and care throughout the cancer journey (CPAC 2012). The implementation included the application of evidence-informed tools by trained health care professionals to identify distress, facilitate intervention or referral, and enhance collaboration among health care providers to meet patient needs. Implementations have expanded in these facilities since the launch of the initiative and the success of this programmatic approach in Canada may assist other jurisdictions with successful implementation of Screening for Distress (sixth vital sign). PURPOSE AND METHODS: Lesson learned from the Screening for Distress (sixth vital sign) initiative are described in this article to share the experiences of the earlier adopter facilities that may assist other cancer centres wishing to implement a similar program. A description of the intiative and the evaluation approach is included to provide the context for the chief lessons learned about the implementation and sustainability of a Screening for Distress (sixth vital sign) program. RESULTS: Key lessons about the considerations for effective implementation and sustainability of a Screening for Distress (sixth vital sign) program included the critical significance of an effective change management strategy, leadership, integration, customization, project management, and program evaluation. A number of important knowledge dissemination and exchange strategies were also identified and the importance of overall co-ordination was emphasized. CONCLUSIONS: Cancer treatment centers in Canada have embraced the concept of a formal programmatic protocol for distress screening. The Screening for Distress (sixth vital sign) initiative built on early lessons, expanded to other facilities, and was reported to make a positive contribution to patient care. The distress screening model has a formal place in the cancer system. The lessons revealed through this evaluation are useful to other cancer centers planning a programmatic approach for distress screening.