Patient and Family Financial Burden in Cancer: A Focus on Differences across Four Provinces, and Reduced Spending Including Decisions to Forego Care in Canada.

GOAL: This study aimed to examine provincial differences in patient spending for cancer care and reductions in household spending including decisions to forego care in Canada. METHODS: Nine-hundred and one patients with cancer, from twenty cancer centers across Canada, completed a self-administered questionnaire (P-SAFE version 7.2.4) (344 breast, 183 colorectal, 158 lung, and 216 prostate) measuring direct and indirect costs and spending changes. RESULTS: Provincial variations showed a high mean out-of-pocket cost (OOPC) of CAD 938 (Alberta) and a low of CAD 280 (Manitoba). Differences were influenced by age and income. Income loss was highest for Alberta (CAD 2399) and lowest for Manitoba (CAD 1126). Travel costs were highest for Alberta (CAD 294) and lowest for British Columbia (CAD 67). Parking costs were highest for Ontario (CAD 103) and lowest for Manitoba (CAD 53). A total of 41% of patients reported reducing spending, but this increased to 52% for families earning

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.

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 with those with early-stage disease or those nearing the end of life. These Multinational Association for Supportive Care in Cancer (MASCC)-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: A MASCC-ASCO expert panel 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 eight 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-Centered 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; and (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 support optimization of health outcomes and care experiences by providing guidance to stakeholders (health care 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.Additional information is available at www.mascc.org, www.asco.org/standards and www.asco.org/survivorship-guidelines.

Perceived Barriers Toward Patient-Reported Outcome Implementation in Cancer Care: An International Scoping Survey.

PURPOSE: Implementation of patient-reported outcomes (PROs) collection is an important priority in cancer care. We examined perceived barriers toward implementing PRO collection between centers with and without PRO infrastructure and administrators and nonadministrators. PATIENTS AND METHODS: We performed a multinational survey of oncology practitioners on their perceived barriers to PRO implementations. Multivariable regression models evaluated for differences in perceived barriers to PRO implementation between groups, adjusted for demographic and institutional variables. RESULTS: Among 358 oncology practitioners representing six geographic regions, 31% worked at centers that did not have PRO infrastructure and 26% self-reported as administrators. Administrators were more likely to perceive concerns with liability issues (aOR, 2.00 [95% CI, 1.12 to 3.57]; P = .02) while having nonsignificant trend toward less likely perceiving concerns with disruption of workflow (aOR, 0.58 [95% CI, 0.32 to 1.03]; P = .06) and nonadherence of PRO reporting (aOR, 0.53 [95% CI, 0.26 to 1.08]; P = .08) as barriers. Respondents from centers without PRO infrastructure were more likely to perceive that not having access to a local PRO expert (aOR, 6.59 [95% CI, 3.81 to 11.42]; P < .001), being unsure how to apply PROs in clinical decisions (aOR, 4.20 [95% CI, 2.32 to 7.63]; P < .001), and being unsure about selecting PRO measures (aOR, 3.36 [95% CI, 2.00 to 5.66]; P < .001) as barriers. Heat map analyses identified the largest differences between participants from centers with and without PRO infrastructure in agreed-upon barriers were (1) not having a local PRO expert, (2) being unsure about selecting PRO measures, and (3) not recognizing the role of PROs at the institutional level. CONCLUSION: Perceived barriers toward PRO implementation differ between administrators and nonadministrators and practitioners at centers with and without PRO infrastructure. PRO implementation teams should consider as part of a comprehensive strategy including frontline clinicians and administrators and members with PRO experience within teams.

Patient-reported outcome measures for dysphagia in head and neck cancer: A systematic review and appraisal of content validity and internal structure.

Dysphagia is a major head and neck cancer (HNC) issue. Dysphagia-related patient-reported outcome measures (PROMs) are critical for patient-centred assessment and intervention tailoring. This systematic review aimed to derive a comprehensive inventory of HNC dysphagia PROMs and appraise their content validity and internal structure. Six electronic databases were searched to February 2023 for studies detailing PROM content validity or internal structure. Eligible PROMs were those developed or validated for HNC, with ≥20% of items related to swallowing. Two independent raters screened citations and full-text articles. Critical appraisal followed COSMIN guidelines. Overall, 114 studies were included, yielding 39 PROMs (17 dysphagia-specific and 22 generic). Of included studies, 33 addressed PROM content validity and 78 internal structure. Of all PROMs, only the SOAL met COSMIN standards for both sufficient content validity and internal structure. Notably, the development of 18 PROMs predated the publication of COSMIN standards. In conclusion, this review identified 39 PROMs addressing dysphagia in HNC, of which only one met COSMIN quality criteria. Given that half of PROMs were developed prior to COSMIN guidelines, future application of current standards is needed to establish their psychometric quality.

A core outcome set for patient-reported dysphagia for use in head and neck cancer clinical trials: An international multistakeholder Delphi study.

BACKGROUND: Measuring dysphagia-related patient-reported outcomes (PROs) in Head and Neck Cancer (HNC) patients is challenging due to dysphagia's multidimensional impact, causing inconsistency in outcome reporting. To address this issue, this study derived a consensus-based core outcome set (COS) for patient-reported dysphagia in HNC clinical trials where swallowing is a primary or secondary endpoint. METHODS: A sample of HNC clinicians, researchers, patients, and caregivers participated in a 2-Round Delphi technique. A Delphi survey, containing a comprehensive list of dysphagia-related PROs, was developed. In Round 1, participants rated item importance on a 5-point scale. Items rated ≥4 by >70% advanced to Round 2, where a consensus meeting addressed items with varied opinions, and the Delphi survey with remaining items was completed. Items rated ≥4 by >70% formed the final COS. RESULTS: Forty-five participants from nine countries were recruited. After Round 1, 40 items were excluded and 64 advanced to Round 2. After Round 2, a 7-outcome COS was established, comprising the domains of dysphagia symptoms, health status and quality of life. CONCLUSION: This study achieved consensus among HNC stakeholders on essential dysphagia PROs for HNC clinical trials. It is advisable to include these 7-core concepts in clinical trials involving people with HNC to facilitate treatment comparisons and data synthesis.

Oncology nursing research: a global perspective.

The specialty of oncology nursing began around the 1970s when oncology as a science became a significant practice in the clinical areas. As the practice of oncology grew in health care settings, physicians focused on providing care for individuals diagnosed with cancer with treatments like surgery, radiation, and novel chemotherapy agents. Physicians treated the physical disease, while oncology nurses cared for, and became specialised in, the assessment and management of side effects and symptoms, and supporting patients and families in coping with the impacts from the disease and treatments. Thus, the oncology nursing speciality focus is on physical, psychosocial, and practical management of patients' care; education of patients and families; and co-ordination of the complex care provided. This article focuses on how the science, or the evidence base, of oncology nursing has grown globally since those early years. The aim of this paper is to illustrate the growth and development in the body of evidence underpinning the oncology nursing specialty by highlighting scientific studies, publications, and evidence-based practice. Over the years, there has been a steady growth in the research evidence supporting the specialty, yet future challenges are ahead. These challenges include demonstrating impact of nursing interventions; infrastructure support; resources for capacity building; building research-mindedness; and strengthening equality, diversity, and inclusion.

Impact of Income on Physical Concerns, Help Seeking, and Unmet Needs of Adult Cancer Survivors.

Purpose: Cancer treatment can have consequences for individuals which may have profound impact on daily living. Accessing assistance can be problematic. This study explores associations between income and concerns, help-seeking, and unmet needs related to physical changes following cancer treatment. Method: A national survey was conducted with cancer survivors about experiences with follow-up care one to three years after treatment. We report a trend analysis describing associations between income and cancer survivors' concerns, help-seeking, and unmet needs related to physical changes after treatment. Results: In total 5,283 cancer survivors between 18 and 64 years responded, of which 4,264 (80.7%) indicated annual household income. The majority of respondents were survivors of breast (34.4%), colorectal (15.0%), and prostate (14.0%) cancers. Over 90% wrote about experiencing physical changes following cancer treatment. Survivors with low annual household incomes of less than $25,000 (CAN) reported the highest levels of concern about multiple physical changes and were more likely to seek help to address them. Conclusions: Cancer survivors can experience various physical challenges and unmet needs following cancer treatment and difficulty obtaining relevant help across all income levels. Those with low income are more severely affected. Financial assessment and tailored follow-up are recommended.

Objectif: le traitement du cancer peut avoir de profondes conséquences sur la vie quotidienne. Il peut être difficile d'accéder à de l'aide. La présente étude explore les associations entre le revenu et les inquiétudes, la demande d'aide et les besoins non respectés liés aux changements physiques après le traitement du cancer. Méthodologie: : les chercheurs ont mené une enquête nationale auprès des survivants du cancer sur leurs expériences des soins de suivi de un à trois ans après le traitement. Ils rendent compte d'une analyse des tendances qui décrit les associations entre le revenu et les préoccupations des survivants du cancer, la demande d'aide et les besoins non respectés liés aux changements physiques après le traitement. Résultats: au total, 5 283 survivants du cancer de 18 à 64 ans ont répondu, et 4 264 (80,7 %) ont précisé leur revenu familial annuel. La majorité des répondants étaient des survivants du cancer du sein (34,4 %), du cancer colorectal (15,0 %) ou du cancer de la prostate (14,0 %). Plus de 90 % ont écrit avoir vécu des changements physiques après le traitement du cancer. Les survivants dont le revenu familial annuel était inférieur à 25 000 $ CA étaient les plus inquiets des multiples changements physiques et les plus susceptibles de demander à l'aide pour les régler. Conclusions: les survivants du cancer peuvent vivre divers changements physiques et éprouver des besoins non respectés après le traitement d'un cancer, et éprouver de la difficulté à obtenir l'aide pertinente dans toutes les catégories de revenu. Ceux qui ont un faible revenu sont plus touchés. Il est recommandé de procéder à une évaluation financière et à un suivi adapté.

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.

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.

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.

Growth and development of oncology nursing in Africa.

There is a growing recognition that oncology nurses are vitally important for an effective cancer control system. Although there is variation among countries, oncology nursing is being recognized as a specialty practice and seen as a priority for development in cancer control plans in many settings. Ministries of Health in many countries are beginning to acknowledge the role nurses play in achieving successful cancer control outcomes. Additionally, the need for access to relevant education for oncology nursing practice is being recognized by nursing and policy leaders. The purpose of this paper is to highlight the growth and development of oncology nursing in Africa. Several vignettes are presented by nurse leaders in cancer care from several African countries. Their descriptions offer brief illustrations regarding the leadership nurses are providing in cancer control education, clinical practice, and research in their respective countries. The illustrations offer insight into the urgent need, and the potential, for future development of oncology nursing as a specialty given the many challenges nurses face across the African continent. The illustrations may also provide encouragement and ideas for nurses in countries where there is little current development of the specialty about how to proceed to mobilize efforts aimed toward its growth.

Growth and development of oncology nursing in Asia.

Oncology nursing is increasingly recognized around the world as being vitally important for an effective cancer control system. Granted, there is variation between and among countries/regions regarding the strength and nature of that recognition, but oncology nursing is clearly seen as a specialty practice and as a priority for development in cancer control plans, especially for high resource countries/regions. Many countries/regions are beginning to recognize that nurses are vitally important to their cancer control efforts and nurses require specialized education and infrastructure support to make a substantial contribution. The purpose of this paper is to highlight the growth and development of cancer nursing in Asia. Several brief summaries are presented by nurse leaders in cancer care from several Asian countries/regions. Their descriptions reflect illustrations of the leadership nurses are providing in cancer control practice, education, and research in their respective countries/regions. The illustrations also reflect the potential for future development and growth of oncology nursing as a specialty given the many challenges nurses face across Asia. The development of relevant education programs following basic nursing preparation, the establishment of specialty organizations for oncology nurses, and engagement by nurses in policy activity have been influential factors in the growth of oncology nursing in Asia.

Variations in Emergency Service Utilization among Cancer Survivors: Results from the Pan-Canadian Experiences of Cancer Patients in Transition Study Survey.

Purpose: The objective of this study was to examine variations in emergency service utilization (ESU) among cancer survivors during the first year after completing primary cancer treatment. Methods: In 2016, the Canadian Partnership Against Cancer collected survey responses from cancer survivors across Canada about self-reported ESU after completing primary cancer treatment. We included survey respondents diagnosed with nonmetastatic breast, hematologic, colorectal, melanoma, or prostate cancer. Multivariable, multinomial logistic regression analysis was used to examine factors associated with cancer survivors' ESU. Results: Of the 5,774 cancer survivors included in our analysis, 22% reported ESU during the first year after completing their primary cancer treatment, 16% reported ESU one to three times, and 6% reported ESU more than three times. Factors significantly associated with frequent ESU included younger age, colorectal and hematologic cancers, more frequent primary care provider and oncology specialist visits, single or retired status, lower income, and self-reported lower quality of life. Conclusion: Our study identified factors associated with more frequent ESU among cancer survivors in the first year after completing primary cancer treatment. These factors highlight differences in cancer survivors' demographics, their ability to access and need for healthcare services, and the complexity of using ESU as a metric for quality improvement in survivorship care. These variations must be considered in quality improvement initiatives.

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.