There are now close to 17 million cancer survivors in the United States, and this number is expected to continue to grow. One decade ago the Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, outlined 10 recommendations aiming to provide coordinated, comprehensive care for cancer survivors. Although there has been noteworthy progress made since the release of the report, gaps remain in research, clinical practice, and policy. Specifically, the recommendation calling for the development of quality measures in cancer survivorship care has yet to be fulfilled. In this commentary, we describe the development of a comprehensive, evidence-based cancer survivorship care quality framework and propose the next steps to systematically apply it in clinical settings, research, and policy.

Purpose Perceived quality of care (QOC) is an increasingly important metric of care quality and can be affected by such factors among patients with cancer as quality of life and physician trust. This study sought to evaluate whether informal caregiver well-being was also associated with perceived QOC among patients with cancer and assessed potential pathways that link these factors. Methods This study used data from the Cancer Care Outcomes Research and Surveillance (CanCORS) consortium. Patients with lung and colorectal cancer enrolled in CanCORS (N = 689) nominated an informal caregiver to participate in a caregiving survey. Both groups self-reported sociodemographic, psychosocial, and caregiving characteristics; cancer characteristics were obtained from the CanCORS core data set. Multivariable logistic regression was used to assess the association between caregiver psychosocial factors and subsequent patient-perceived QOC, controlling for earlier patient-perceived QOC and covariates. Secondary analysis examined potential pathways that link these factors. Results Patients whose informal caregiver had higher levels of depressive symptoms were significantly more likely to report fair or poor QOC (odds ratio, 1.06; 95% CI, 1.01 to 1.13). When caregivers reported fair or poor self-rated health, patients were more than three times more likely to report fair or poor perceived QOC (odds ratio, 3.76; 95% CI, 1.76 to 9.55). Controlling for patient psychosocial factors and physician communication and coordination of medical care reduced the effect size and/or statistical significance of these relationships. Conclusion Informal caregivers are an important part of the care team and their well-being is associated with patient-perceived QOC. Engaging informal cancer caregivers as part of the care team and conducting ongoing risk stratification screening and intervention to optimize their health may improve patient-reported outcomes and QOC.

Purpose/Objectives Adjuvant endocrine therapy (AET) has been shown to improve survival in hormone receptor–positive breast cancer survivors, but as many as half do not complete recommended treatment. Management of medication-related side effects and engagement with providers are two potentially modifiable factors, but their associations with adherence are not well understood. The aims were to build on survey results to qualitatively explore survivors’ experiences with prescribed AET to (a) describe appraisal and management of AET side effects and (b) deconstruct decisions to initiate, discontinue, or maintain AET. Research Approach The authors used a mixed-methods explanatory sequence research design with a qualitative emphasis. Setting Survivors were recruited from a clinical cancer registry maintained at the University of Texas Southwestern Medical Center, which includes the Harold C. Simmons Comprehensive Cancer Center (National Cancer Institute–designated), in Dallas. Participants 452 survivors completed a survey, and 30 took part in telephone interviews. Methodologic Approach Qualitative methods were used in which the authors recorded and transcribed interviews for analysis and used open coding to reduce data into themes. Findings Among adherent survivors, the themes of tolerance of side effects and perseverance were strong. Nonadherent survivors expressed more difficulty managing side effects and perceived fewer benefits when side effects were bothersome. The most common side effects mentioned by all survivors were menopausal symptoms and joint pain; less common side effects were cognitive decline and cardiac distress. Some sought advice from their oncology team. Nonadherent survivors appeared initially motivated to maintain AET but identified a tolerance limit for side effects after which a provider’s recommendation was less influential in their decision to maintain or discontinue AET. Interpretation This study elucidated adherence as a complex continuum of behaviors, appraisals, and decision points. These insights may be particularly useful in counseling survivors taking AET and promoting timely delivery of clinical interventions to enhance adherence. Implications for Nursing Nurses should be involved in the planning and implementation of clinical interventions to manage side effects and other barriers to AET adherence.

Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.

Today, there are more than 16.9 million cancer survivors in the United States; this number is projected to grow to 22.2 million by 2030. While much progress has been made in understanding cancer survivors needs and in improving survivorship care since the seminal 2006 Institute of Medicine report From Cancer Patient to Cancer Survivor: Lost in Transition, there is a need to identify evidence gaps and research priorities pertaining to cancer survivorship. Thus, in April 2019, the National Cancer Institute convened grant-funded extramural cancer survivorship researchers, representatives of professional organizations, cancer survivors, and advocates for a one-day in-person meeting. At this meeting, and in a subsequent webinar aimed at soliciting input from the wider survivorship community, evidence gaps and ideas for next steps in the following six areas, identified from the 2006 Institute of Medicine report, were discussed: surveillance for recurrence and new cancers, management of long-term and late physical effects, management of long-term and late psychosocial effects, health promotion, care coordination, and financial hardship. Identified evidence gaps and next steps across the areas included the need to understand and address disparities among cancer survivors, to conduct longitudinal studies as well as longer-term (>5 years post-diagnosis) follow-up studies, to leverage existing data, and to incorporate implementation science strategies to translate findings into practice. Designing studies to address these broad evidence gaps, as well as those identified in each area, will expand our understanding of cancer survivors’ diverse needs, ultimately leading to the development and delivery of more comprehensive evidence-based quality care.

Background Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assistance with activities of daily living, and offering social support. We examined associations between receipt of medical/nursing skills training with caregiver burden, and the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients. Methods Caregivers identified by cancer patients in the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium completed a questionnaire assessing care provided, type of medical/nursing skills training received, burden (measured by the short-form Zarit Burden Interview), and confidence caring for the patient’s physical needs. Regression models adjusting for sociodemographic, caregiver, and care recipient characteristics assessed the relationship between training received and burden, and mediation analysis assessed the role of confidence in this relationship. Results 641 caregivers performed some type of medical/nursing task, with 59% (n=377) reporting that they did not receive training for all care provided. Caregivers reported moderate levels of burden (mean summary score = 32.07, SD = 12.66, possible range 14–70), and lack of receipt of training was associated with greater levels of burden (b = 2.60; SE 0.98; p-=0.01). Confidence partially mediated the relationship between training and burden (Sobel’s t =1.90; p= 0.03). Conclusions As the number of cancer patients and caregivers increase, understanding how best to reduce caregiver burden is necessary. Skills training is a potential area for interventions, but research on how best to provide training for caregivers (i.e., content, mode of delivery, timing) is needed.

Objective: Social support may have a positive impact on health outcomes for patients and caregivers, but the extent to which social support and health outcomes are interrelated for both is unknown. We examine the dyadic interrelationships between social support and health among cancer patients and their caregivers. Methods: Lung and colorectal cancer (CRC) patient and caregiver dyadic data were obtained from the Cancer Care Outcomes Research and Surveillance Consortium. Patients and caregivers self-reported sociodemographic, social support, and caregiving characteristics at 5-(n=218 lung; n=222 CRC) or 12-months post-diagnosis (n=198 lung; n=290 CRC). Structural equation modeling was used to examine actor-partner interdependence models (APIM) of lung and CRC dyads at 5- and 12-months post-diagnosis. Results: At 5-months post-diagnosis, no interdependence between patient and caregiver social support was detected for CRC or lung dyads (all p>0.05). At 12-months post-diagnosis, no interdependence was detected for CRC dyads (all p>0.70); lung dyads showed complete interdependence, indicating patient social support is associated with better caregiver self-reported health (β=0.15, p<0.001), and caregiver social support is associated with better patient self-reported health (β=0.18, p<0.001). Conclusion: Social support has positive impact on patient and caregiver perceived health across the cancer trajectory, and these effects may differ by cancer site and time. Future research and translational efforts are needed to identify effective ways to bolster both patient and caregiver social support and to determine critical moments for intervention.

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