Survivorship Information Research Articles

To Close the Gap of Survivorship Education: A Series of Breast Cancer Webinars in Collaboration with Wellspring

Background and Aims: Breast cancer survivors face uncertainties post-treatment, requiring ongoing support and education. Digital media online training courses may be used to disseminate evidence-based cancer information. In this study, we hosted a series of webinars which aimed to empower survivors with evidence-based survivorship information. Materials and Methods: A four-part weekly online webinar series (1 hour each) including expert presentations, survivor insights, and interactive question-and-answer sessions, was held in October 2023 during Breast Cancer Awareness Month, via the Zoom digital platform. Topics covered included surveillance, mental health, adjuvant antihormonal therapy, and sexual health. After the webinar series, participants completed a post-webinar survey electronically. The post-webinar survey assessed participant satisfaction, understanding of topics, and suggestions for improvement. Likert scales were used to measure self-reported changes in understanding of the discussed topics. Results: 99 participants took part in the Breast Survivorship and Surveillance webinar, 97 participated in the Mental Health in Breast Survivorship webinar, 108 participated in the Adjuvant Antihormonal Therapy for Breast Cancer webinar, and 74 participated in the Sexual Health after Breast Cancer webinar. 25 participants completed the post-webinar survey, administered after the final webinar (sexual health). Among the 25 survey participants, 96% (24/25) expressed that the information presented in the series of webinars was very useful or extremely useful. Furthermore, 80% (20/25) noted significant knowledge improvement. Conclusions: This breast cancer webinar series effectively bridges the knowledge gap in survivorship, offering valuable insights, emotional support, and practical guidance. The results emphasize the importance of ongoing education and support for breast cancer survivors.

Evaluation of NCI-Designated Cancer Center and Comprehensive Cancer Center Survivorship-Focused Websites: Information Provided and Accessibility.

Individuals with a history of cancer increasingly seek health information from online resources, including NCI-designated Cancer Center websites. Centers receive NCI designation because they provide excellent care and engage in cutting-edge research. However, the information presented on these webpages and their accessibility is unknown. An evaluation of the survivorship-focused webpages from NCI-designated Cancer Centers is needed to assess survivorship information and accessibility of these webpages. We conducted an evaluation of the survivorship-focused webpages from 64 NCI-designated Cancer Centers. We evaluated where survivorship-focused webpages were housed, if there was a survivorship clinic or program, target audience of the webpage, how cancer survivor was defined, contact methods, and available resources. Accessibility outcomes included readability, font type, font size, color scheme, and alternative text (alt text) descriptors. An artificial intelligence (AI) audit was conducted to assess if the webpage was compliant with national accessibility guidelines. Most cancer centers had a survivorship-focused webpage, with 72% located on the cancer center's website and 28% on a health system website. Survivorship information available varied considerably and was often lacking in detail. Although three-quarters of webpages targeted patients only, variable definitions of cancer survivor were observed. Accessibility issues identified included inconsistent use of alt text descriptors, font size smaller than 15 points, and color schemes without adequate contrast. The average reading-level of information presented was above 12th grade. Only 9% of webpages were compliant with online accessibility guidelines; 72% semicompliant and 21% were noncompliant. Information presented on NCI-designated Cancer Center survivorship-focused webpages was inconsistent, often lacking, and inaccessible. NCI-designated Cancer Centers are role models for cancer research in the United States and have an obligation to provide survivorship information. Changes to content and website design are needed to provide better information for individuals seeking resources and health information relative to their cancer and care.

Unveiling perspectives on the psychosocial impacts of childhood cancer survival on young adult survivors' reassimilation journey: A qualitative exploration.

Approximately 82% of children with childhood cancer survive more than five years after diagnosis. Living as a cancer survivor elicits a new reality that can include psychosocial impacts. These psychosocial impacts interact collectively, especially regarding reassimilation, and are rarely explored. To explore the psychosocial impacts of surviving childhood cancer and reassimilation back into society in young adult survivors of childhood cancer. Individual in-depth semi-structured interviews were conducted with childhood cancer survivors and explored psychosocial aspects associated with returning to work, school, and social environments after remission. Interpretive phenomenological analysis was conducted once interviews were manually transcribed. A group interview with survivors was held to discuss the study's findings and interpretation. Individual interviews and the group interview revealed three major themes: outlook on reassimilating, outlook on coping, and outlook on cancer. This work is a first step to understanding how survivors' personal outlook on coping and healthcare system barriers play influential roles in reassimilation following cancer treatment. Survivors expressed the need for reliable survivorship information and improved communication with healthcare providers regarding what to expect, so they could feel prepared for life post-cancer. These aspects need to be explored more deeply through other qualitative studies.

What are the mechanisms underlying the delivery of survivorship care information in Australia? A realist review.

Quality survivorship information is an essential component of cancer care. However, survivors often report not receiving this information and healthcare professionals report limited practical guidance on how to effectively deliver survivorship information. Therefore, this study used realist review methods to identify mechanisms reported within the published literature for communicating survivorship information and to understand the contextual factors that make these mechanisms effective. Full-text papers published in CINAHL, PubMed, Web of Science, Scopus, Cochrane Library, and Academic Search Ultimate were included. Studies included in this review were conducted in Australia between January 2006 and December 2023, and reported on how information regarding survivorship care was communicated to adult cancer survivors living in the community. This review utilized realist methodologies: text extracts were converted to if-then statements used to generate context-mechanism-outcome theories. Fifty-one studies were included and six theories for mechanisms that underpin the effective delivery of survivorship information were formed. These include: (1) tailoring information based on the survivors' background, (2) enhancing communication among providers, (3) employing dedicated survivorship staff, (4) providing survivorship training, (5) reducing the burden on survivors to navigate their care, and (6) using multiple modalities to provide information. Findings can inform practical guidance for how survivorship care information is best delivered in practice. Clinicians can apply this guidance to improve their individual interactions with cancer survivors, as can policymakers to develop healthcare systems and procedures that support effective communication of cancer survivorship information.

INFORMATION SEEKING IN OLDER ADULT RURAL CANCER SURVIVORS: UNMET NEEDS AND SEARCH EXPERIENCES

Abstract Cancer survivors over the age of sixty-five have specialized supportive care needs related to maintaining their health and quality of life after treatment. However, cancer survivors living in rural areas may experience barriers like limited digital infrastructure and/or low health literacy when attempting to access necessary informational resources. This project sought to identify older adult rural cancer survivors’ domains of unmet informational support and experiences searching for supportive informational resources. Data from a survey administered to cancer survivors (N=292 with complete age data) in rural areas of Western New York (RUCA codes 7-10) were analyzed using descriptive statistics. Variables of interest included Internet access, information-seeking activities, cancer-related topics of interest, and information search experiences. Fifty-four percent of participants in the sample self-identified as over the age of 65. Among older adult cancer survivors, 62% reported using the Internet. The following topics were identified as unmet cancer survivorship information needs: (1) decreasing the risk of cancer recurrence, (2) new symptoms that warrant contacting one’s doctor, and (3) medical advances in treatment. Most older adult respondents (70%) were confident in their ability to find needed health information but 40% were concerned about the quality of the information they found and 31% found their search experience frustrating. While rural cancer survivors have access to digital resources and report confidence in their ability to find survivorship information, our findings highlight the need for tailored information on cancer survivorship and interventions to support information appraisal and selecting high quality informational sources.

Health-Related Quality of Life Outcomes in Older Hematopoietic Cell Transplantation Survivors

The use of hematopoietic cell transplantation (HCT) has been increasing in older patients. However, the levels if distress, psychosocial functioning, and health-related quality of life (HRQOL) among older HCT survivors remains largely unknown. In this secondary analysis using data from 2 randomized controlled trials, we analyzed baseline Cancer and Treatment Distress (CTXD) and Confidence In Survivorship Information (CSI) surveys of HCT survivors who were age ≥60 years at the time of transplantation and alive and disease-free ≥1 year post-autologous or -allogeneic HCT. We analyzed associations of these parameters with the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the 12-Item Short Form Survey (SF-12) and a healthcare adherence (HCA) scale, after adjusting for transplantation and patient demographic factors. A total of 567 patients were included. The median patient age at HCT was 65 years, and 68% of the patients underwent autologous HCT. The median CTXD score was .7 (mild), and the greatest distress was reported in the "health burden" subscale. The median CSI score was 1.4 (moderate-high), with the lowest confidence reported in the "late effects" subscale. We found negative Spearman correlations between CTXD score and SF-12 PCS (P=-.59) and MCS (P=-.54) and positive Spearman correlations between CSI score and SF-12 PCS (P=.23) and MCS (P=.30). The median HCA scale score was high at .8. Male sex, autologous HCT, increased distress level, and worse CSI score were associated with lower use of preventive care. Older survivors experienced a low level of distress and moderate-high level of CSI at ≥1 year post-HCT. As lower distress and higher CSI were associated with improved HRQOL and optimized preventive HCA, CTXD/CSI measures can be used to individualize the care of older adult HCT survivors.

Cancer Survivors' Evolving Perceptions of a New Supportive Virtual Program.

This qualitative study begins to explore cancer survivors' evolving perceptions of "Focus on the Future," a 6-week supportive virtual program led by trained volunteers and health care professionals. Through purposive sampling, participants (n = 10) enrolled in the program were individually interviewed shortly before attending, mid-way through, and at program completion. Interviews were digitally recorded and transcribed verbatim. Thematic analysis was used to develop key elements of program expectations and users' perceptions over time. Three themes transpired from the data: (1) Trustworthiness and timeliness of survivorship information and expert guidance, (2) Normalization of survivors' experiences, and (3) Virtual program delivery issues. Some participants' perceptions remained unchanged from pre-program expectations to post-program completion such as appreciating the efficiency of virtual delivery and "health safe" exchanges given the COVID-19 pandemic. In contrast, other perceptions became more polarized including drawbacks related to "more superficial" virtual connections and uneven topic relevance as the program evolved. Program participants appreciated timely information and support from volunteers and experts through virtual means and consecutive weekly sessions. Gauging participants' perceptions across time also offer opportunities to adjust program content and delivery features. Future research should explore key program development strategies to ensure that cancer supportive programs are optimally person-centered, co-designed, and situation-responsive.

Living with or beyond lymphoma: A rapid review of the unmet needs of lymphoma survivors.

ObjectiveTo establish an understanding of the unmet needs of people living with or beyond a lymphoma diagnosis. Survivors of lymphoma are at increased risk of unmet needs due to cancer, treatment‐related toxicities and extended survivorship. Despite the rapidly growing numbers of lymphoma survivors, their needs and research priorities are underserved and undervalued, therefore left largely unaddressed.MethodsA rapid review method and reflexive thematic analysis approach assimilated current knowledge. Eligibility criteria included quantitative, qualitative, or mixed approaches employing cross‐sectional, longitudinal, cohort or review designs focused on the needs of adult lymphoma survivors (any subtype or stage of disease). Five databases: CINAHL, EMBASE, Medline, PsycInfo and Scopus, were systematically searched.ResultsForty‐seven studies met the inclusion criteria via a stringent screening process facilitated by NVivo. Almost 60 per cent of articles were published within the last five years and investigated a homogenous lymphoma sample. Most studies employed quantitative approaches (77%) and cross‐sectional designs (67%). Studies were of high methodological quality. Five major themes were identified: disparity in health service delivery, the psychological impact of cancer, impactful and debilitating concerns, the monetary cost of survival and insufficient provision of survivorship information. A meta‐analytical approach was not feasible due to the breadth of methodologies of included studies.ConclusionsThis review shows that lymphoma survivors experience a myriad of unmet needs across multiple domains, reinforcing the need for lymphoma‐specific research. However, more research is needed to advance and achieve informed decision‐making relating to survivorship care, placing due attention to the needs and research priorities of lymphoma survivors.

Breast Cancer Survivors' Satisfaction and Information Recall of Telehealth Survivorship Care Plan Appointments During the COVID-19 Pandemic.

To examine patient satisfaction and information recall after telehealth breast cancer survivorship visits with a nurse practitioner. Female survivors of breast cancer after their first visit with a nurse practitioner in the outpatient survivorship clinic post-treatment. Participants included female survivors who were originally diagnosed with stage 0-III breast cancer and have since completed an initial telehealth appointment to review the survivorship care plan. Survivors were invited to complete a 20-question electronic survey about their satisfaction and recall of visit information. 62 participants completed the survey and indicated an overall high level of satisfaction with telehealth survivorship appointments. Most recalled key survivorship information from the visit and felt the appropriate amount of information was discussed. Overall satisfaction was significantly correlated with the length and convenience of the appointment, and the personal manner and technical skills of the nurse practitioner. Survivors' age was not associated with significant differences in overall satisfaction. Telehealth for initial survivorship visits demonstrated high satisfaction with telehealth and the overall visit as a low-cost intervention to treat symptoms.

Still Lost in Transition? Perspectives of Ongoing Cancer Survivorship Care Needs from Comprehensive Cancer Control Programs, Survivors, and Health Care Providers.

Public health agencies have played a critical role in addressing the complex health and mental health needs of cancer survivors. We conducted a mixed-methods evaluation via a Web-based survey (n = 51) and focus groups (n = 11) with National Comprehensive Cancer Control Program (NCCCP) recipients and interviews (n = 9) with survivors, health care providers (HCPs), and patient navigators to explore these audiences’ cancer survivorship information needs and strategies to improve resource dissemination. Participants revealed a need for tailored resources and support for survivors on healthy lifestyle, post-treatment survivorship concerns, psychosocial health, and navigating the health system. HCP needs included education on survivorship care plans and care coordination to facilitate the transition between oncology and primary care. HCPs were survivors’ most trusted source for information; however, participants noted difficulties engaging HCPs in survivorship care. These findings can help public health practitioners focus their efforts to better meet the needs of cancer survivors and their HCPs.

Southern California Pediatric and Adolescent Cancer Survivorship (SC-PACS): Establishing a Multi-Institutional Childhood, Adolescent, and Young Adult Cancer Survivorship Consortium in Southern California.

IntroductionGiven their risk for late effects and early mortality, childhood/adolescent cancer survivors (CACSs) should receive longitudinal monitoring and care. The Southern California Pediatric and Adolescent Cancer Survivorship (SC-PACS) consortium was established in February 2017 to combine resources and expertise across seven participating survivorship programs. Its over-arching objective is to address the unique needs of its demographically diverse CACS population through collaborative survivorship research and care initiatives. The first SC-PACS study was an assessment of survivorship needs and evaluation of current services as reported by CACSs and their parents/primary care givers (PPCGs) receiving survivorship care at consortium sites.MethodsAs an initial investigation, a cross-sectional survey for CACSs and their parents/primary care givers was conducted. The goal was to enroll 10 CACSs and 10 PPCGs from each of the seven institutions (total of 140 participants). The eligibility criteria for CACSs were age ≥13 years at the time of enrollment, >2 years from the end of treatment, sufficient cognitive function to complete the survey, and English or Spanish language proficiency. For CACSs <13 years old, their PPCGs completed the survey. This was a convenience sample using frequencies and proportions to describe participant characteristics and survey responses, which were entered into a Research Electronic Data Capture (REDCap) database.ResultsAcross the consortium, of the recruitment target of 140 participants (CACSs, n=70; PPCGs, n=70), 127 (90.7%) participants were enrolled. Of the 127 participants enrolled, 65 (51.2%) were CACSs and 62 (48.8%) were PPCGs. The majority of participants were female (51.2%), were Hispanic (62.2%), spoke English as the primary language at home (57.5%), and were diagnosed between one to four years of age (45.7%). Information considered most important by both CACSs and PPCGs was related to cancer diagnosis (90.8%) and future risks as a result of cancer treatment received (98.0%). Overall, 78% of CACSs and PPCGs found the survivorship information (treatment summary) useful, and 83% felt that they received the right amount of information about their cancer.ConclusionOur aim was to obtain baseline data that would characterize our CACS population, inform consortium priorities, and establish a collaborative research platform. The ultimate goal of the consortium is to develop a comprehensive survivorship care approach that addresses the most important needs of cancer survivors in our catchment area and promotes best practice interventions. Future plans are to expand the needs assessment survey to obtain a wider representation of the survivor population at SC-PACS institutions, helping create strategies to improve cancer-specific education, delivery of treatment summary, and access to community resources for this demographically and socioeconomically diverse population.

Information needs and preferences among rural cancer survivors in Queensland, Australia: a qualitative examination

ObjectiveThis study aimed to understand how cancer survivors in rural Queensland seek and receive information, as well as their preferences regarding the content and delivery of health‐related information. MethodsThis study explored cancer survivors’ experiences in seeking and comprehending health information using a qualitative descriptive approach. Semi‐structured interviews were conducted with 24 participants. Data were analysed using reflexive thematic analysis. ResultsTwo major themes and six sub‐themes were identified including 1) information content and gaps – a) information about diagnosis and treatment, b) survivorship information gaps and c) practical support needs and 2) delivery and acceptance of information – a) sources of information, b) personalised information needs and c) information seeking or avoidance. Findings suggested that health information provision was inconsistent; survivors’ attitudes towards seeking information varied greatly; and survivors’ had difficulty processing information due to emotional distress. ConclusionThe role of the health professional is critical in providing information and support to rural cancer survivors. Information provided should be tailored to meet the needs and preferences of individuals taking into consideration demographic factors and attitudes. Implications for public healthThe current findings imply that quality information provision after cancer treatment would facilitate improvements in satisfaction among rural cancer survivors.

CASIDE: A data model for interoperable cancer survivorship information based on FHIR

Cancer survivorship has traditionally received little research attention although it is associated with a variety of long-term consequences and also many other comorbidities. There is an urgent need to increase research on this area, and the secondary use of healthcare data has the potential to provide valuable insights on survivors' health trajectories. However, cancer survivors' data is often stored in silos and collected inconsistently. In this study we present CASIDE, an interoperable data model for cancer survivorship information that aims to accelerate the secondary use of healthcare data and data sharing across institutions. It is designed to provide a holistic view of the cancer survivor, taking into account not just the clinical data but also the patient’s own perspective, and is built upon the emerging Health Level Seven (HL7) Fast Healthcare Interoperability Resources (FHIR) standard. Advantages of adopting FHIR and challenges in information modelling using this standard are discussed. CASIDE is a generalizable approach that is already being used as a support tool for the development of downstream applications to support clinical decision making and can contribute to translational collaborative research on cancer survivorship.

Distress, Health-Related Quality of Life (HQOL) and Confidence in Survivorship Information (CSI) in Older (≥60 Years) Hematopoietic Cell Transplant (HCT) Patients

Background: The use of HCT to treat older (≥60 years) patients with hematological malignancies has markedly increased in recent years, however, the long-term effects of HCT on distress, psychosocial functioning, and HQOL in older HCT survivors is largely unknown. Though older HCT survivors have a higher risk of disease recurrence, they may have less access to resources and subsequently experience more pronounced late effects of disease and treatment. Confidence in Survivorship Information (CSI) in this specific age group has not been reported.Methods: We conducted a secondary analysis on a subgroup of patients enrolled in INSPIRE (NCT01602211) and PCORI-SCP (NCT02200133) clinical trials. Eligibility criteria for inclusion include HCT patients who were ≥ 60 years at time of transplant performed in 2003-2014, survived ≥ 1 year post-transplant with no evidence of disease relapse or secondary cancers. Patients were eligible for inclusion irrespective of transplant type (autologous or allogeneic), diagnosis, donor source or conditioning regimen. Primary endpoint was distress level in older HCT survivors; secondary endpoints included CSI and HQOL outcomes. We collected baseline distress level as measured by Cancer and Treatment Distress (CTXD) score, HQOL (measured by SF-12 Mental and Physical Component Summaries (PCS/MCS) and CSI (measured by a 15-item CSI questionnaire). Sociodemographic, disease and transplant factors were extracted from medical databases. Nonparametric (Wilcoxon rank sum/Kruskal-Wallis) test was conducted for comparing 2 or 3 groups. Spearman correlation and univariate linear regression model were used to evaluate associations between CTXD/CSI and PCS/MCS. Bonferroni correlation was used to adjust for multiple pairwise comparisons within age group.Results: A total of 567 patients satisfied the eligibility criteria and were included in this analysis. Median age at time of HCT was 69 years with 57% male; two-thirds were autologous HCT recipients. Table 1 details patient characteristics. The median CTXD score for older HCT survivors was 0.7 (range 0-2.7, SD 0.6) indicating low/insignificant level of distress post-HCT. 20-30% of HCT survivors reported moderate distress when asked about concerns regarding relapse risk, loss of energy and functional decline. Type of transplant (auto vs allo), age group (<65 years, 65-70 years, ≥70 years), and time from HCT (≤2 years vs > 2 years) showed no apparent effect on reported distress level. CSI median score was 1.4 (range 0-2) which remains consistent with the score reported previously by the original trial including all age groups, indicating that older HCT survivors may have similar level of confidence in their survivorship information as their younger counterparts. Of note, close to 20% of the older HCT survivors reported poor CSI when asked about strategies for prevention and treatment of long-term effects of HCT and when asked about their confidence in availability of community resources to deal with long-term HCT complications. No statistically significant correlation was identified between CSI in older survivors and transplant type, time from HCT, or age group. HQOL outcomes indicated a median PCS of 48.2 (range 21.1 - 62.9) and a median MCS of 54.7 (range of 14.9 - 67.2). Interestingly, even though not reflected on the overall median CTXD and CSI scores for this cohort, a significant individual association between CTXD/CSI and PCS/MCS measures of HQOL was found (Figure 1). A subgroup analysis conducted on older alloHCT recipients confirmed the same findings of clinically insignificant distress level (mean CTXD ≤1.1) while having a similar level of CSI when compared to all age groups. Interestingly, time from HCT (≤2 years vs > 2 years) showed no significant effect on distress level reported by older alloHCT survivors, and cGVHD status did not correlate with CTXD or CSI scores nor with PCS/MCS in older alloHCT survivors.Conclusion: This is the largest study to date to investigate patient-reported distress, CSI and HQOL in older HCT survivors. Our data indicate that older HCT survivors have low levels of stress after HCT and had confidence in survivorship information in most aspects of their care. However, targeted interventions should focus on improving strategies for prevention, treatment and availability of community resources to deal with late effects of HCT; aspects reported as points of low CSI by older HCT survivors. [Display omitted] DisclosuresFarhadfar: Incyte: Consultancy. Shaw: Orca bio: Consultancy; mallinkrodt: Other: payments. Devine: Be the Match: Current Employment; Orca Bio: Consultancy, Research Funding; Johnsonand Johnson: Consultancy, Research Funding; Sanofi: Consultancy, Research Funding; Magenta Therapeutics: Current Employment, Research Funding; Tmunity: Current Employment, Research Funding; Vor Bio: Research Funding; Kiadis: Consultancy, Research Funding. Majhail: Anthem, Inc: Consultancy; Incyte Corporation: Consultancy. Wingard: Merck: Consultancy; AlloVir: Consultancy; Celgene: Consultancy; Shire: Consultancy; Janssen: Consultancy; Cidara Therapeutics: Consultancy.

Cancer and Treatment Distress (CTXD) and Confidence in Survivorship Information (CSI) Trends in Older (≥60 Years) Allogeneic Hematopoietic Cell Transplantation (AlloHCT) Survivors

Background:AlloHCT survivors generally report higher rates of cancer- and treatment-related distress compared to the general population, although data on cancer and treatment Distress (CTXD) and Confidence in Survivorship Information (CSI) in older alloHCT recipients are limited. We have reported that older HCT survivors have generally low levels of distress and intermediate-high level of CSI (Al-Mansour et al, abstract submitted to ASH 2021 meeting). In this study, we describe specific distress and CSI concerns reported by older alloHCT survivors and their association with other patient-reported outcomes and transplant-related factors.Methods:This cross-sectional retrospective secondary analysis used baseline data from two randomized controlled trials of survivorship interventions in alloHCT recipients enrolled in 18 US transplant centers (combined dataset from survivorship care plan trial [NCT00799461] and internet based self-management intervention trial [NCT01602211]). A total of 181 enrolled patients transplanted from 2003-2014 were ≥60 years of age at alloHCT and were alive and disease-free at ≥1-year post-transplant. All donor and graft types were included in this analysis. Distress was measured by CTXD scale, in which higher values indicate higher levels of distress. Survivorship confidence was based on the CSI questionnaire, in which higher values indicate greater confidence. Health-related quality of life (HQOL) was assessed with the SF-12, with high scores indicating better physical function (PCS) and mental function (MCS). Clinical and sociodemographic variables were summarized in descriptive statistics. Non-parametric test (Wilcoxon rank sum test / Kruskal-Wallis test) was conducted for comparing two or three groups for CTXD/CSI. Spearman correlation and univariate linear regression model were used to evaluate associations between CTXD/CSI and PCS/MCS. Bonferroni correlation was used to adjust for multiple pairwise comparisons within age group at transplant.Results:The median age of this older sample at alloHCT was 64 (range 60-81), with the largest proportions non-Hispanic (96%), White (97%), and males (57%). The majority received peripheral blood grafts (88%) from an unrelated donor (65%) for their first (96%) transplant. At the time of the survey, survivors were at a median of 3 years (range 1-9) from alloHCT. Mean CTXD overall score was 0.85 (standard deviation [SD] 0.44). Among CTXD items, highest distress was reported for “low energy” (mean 1.42, SD 0.97) followed by “feeling tired and worn out” (mean 1.32, SD 0.93) and “not being able to do what I used to do” (mean 1.28, SD 0.98), while the lowest distress was reported for “communication with medical people”(mean 0.32, SD 0.66) and “getting information when I need it” (mean 0.39, SD 0.70; Figure 1). Similarly, mean CSI overall score was 1.39 (SD 0.44) in this Among CSI items, information on “disease treated” (mean 1.79, SD 0.41) scored the highest in confidence level followed by “treatment received for transplant” (mean 1.75, SD 0.46); meanwhile, information on “community resources for long-term effects of disease” (mean 1.14, SD 0.72) followed by “strategies for treating long-term physical effects of your treatment” (mean 1.15, SD 0.71) scored the lowest in confidence level (Figure 2). There were negative correlations between CTXD and PCS/MCS (P<0.001) and positive correlation between CSI and PCS/MCS (P<0.001). Different age groups at transplant (<65, 65-<70, vs. ≥70), history of chronic graft-versus-host disease, and enrollment time from transplant (≤2 vs. >2 years) showed no apparent effect on CTXD or CSI overall scores.Conclusion:Older alloHCT survivors report low level of cancer- and treatment-related distress and a relatively high level of CSI. Physical and mental function were associated with lower distress and increased CSI. Survivorship intervention needs in older alloHCT recipients include management of fatigue, education on long-term effects, and improving knowledge of and access to resources for long-term recovery and reintegration to society. The CTXD and CSI scales provide opportunities to evaluate and tailor interventions to the needs of older survivors with the potential to improve alloHCT survivorship care for older adults. [Display omitted] DisclosuresHong: Adaptive Biotechnology: Other: Current employment of my spouse. Farhadfar: Incyte: Consultancy. Shaw: Orca bio: Consultancy; mallinkrodt: Other: payments. Devine: Sanofi: Consultancy, Research Funding; Johnsonand Johnson: Consultancy, Research Funding; Orca Bio: Consultancy, Research Funding; Be the Match: Current Employment; Vor Bio: Research Funding; Tmunity: Current Employment, Research Funding; Magenta Therapeutics: Current Employment, Research Funding; Kiadis: Consultancy, Research Funding. Wingard: Merck: Consultancy; AlloVir: Consultancy; Celgene: Consultancy; Shire: Consultancy; Janssen: Consultancy; Cidara Therapeutics: Consultancy. Majhail: Anthem, Inc: Consultancy; Incyte Corporation: Consultancy.

Individualized Treatment Summaries and Survivorship Care Plans (SCPs) for Hematopoietic Cell Transplant (HCT) Survivors Reduces Cancer Treatment Distress in a Randomized, Multicenter Study

Purpose: As HCT recipients are at risk for late effects, SCPs are increasingly being used in clinical practice to facilitate survivor care despite the lack of high-quality data on their implementation or efficacy. We conducted a randomized study to evaluate the impact of SCPs on HCT survivors' confidence in survivorship information (CSI), with secondary analyses evaluating cancer treatment distress (CTXD), knowledge of transplant exposures, health behaviors, health care utilization (HCU) and health general self-efficacy.Methods: Adult (≥18 yrs at HCT) survivors who were 1-5 years post-transplant, proficient in English, and without relapse or second cancers were eligible. To enhance generalizability, recipients with any diagnosis, HCT/donor type, and conditioning regimen could participate. Treatment summaries were generated using patient-specific clinical data submitted by transplant centers to the Center for International Blood and Marrow Transplant Research (CIBMTR). Focus group feedback from patients/caregivers, HCT physicians/nurses/social workers and general hematologist-oncologists informed the design of paper-based SCPs. Individualized SCPs were developed based on patient risk-factors and treatment exposures (e.g., age, sex, HCT type, graft-versus-host disease [GVHD], and use of total body irradiation [TBI] or steroids) and published guidelines for long-term followup of HCT survivors (Majhail et al, BBMT 2012). A baseline phone survey was conducted after enrollment and included standardized patient-reported outcomes (PROs) related to the objectives listed above. Patients were then randomized to SCP or routine care (RC) per their transplant center. A phone survey 2 weeks later assessed health literacy for patients on both arms and asked questions related to use of SCP for patients on the intervention arm. End-of-study phone PRO surveys were then administered at 6 months. The study was powered to detect a standardized effect size of ≥0.3 for the intent-to-treat primary outcome of CSI.Results: A total of 495 patients were enrolled at 17 transplant centers, of whom 458 completed baseline survey and were randomized (SCP=231, RC=227); 201 (87%) SCP and 199 (88%) RC patients completed 6 month assessments. Patient and transplant characteristics (including health literacy scores) were well balanced between the two arms. Median age was 59 yrs in both arms; 96% (SCP) and 92% (RC) patients were White, 49% and 60% were male, 48% and 44% had received allogeneic HCT, 11% and 16% had received a previous HCT, and 21% and 20% had received TBI based conditioning, respectively. Among allogeneic HCT recipients, 63% and 67% had a history of acute GVHD and 60% and 66% had a history of chronic GVHD, respectively. Receiving a SCP was not associated with a change in CSI, but was significantly associated with reduction in CTXD after Bonferroni correction for multiple outcomes (Table). Decrease in CTXD score in the SCP arm was independent of sex, transplant type, GVHD status, diagnosis, and health literacy. Age was significantly associated with CTXD scores (with higher distress among younger patients), although not with the SCP effect size (no significant interaction). No SCP effect was observed on any of the other secondary outcomes.Summary: In this large multicenter randomized study, we demonstrate that SCPs generated automatically using a centralized clinical registry (CIBMTR) to individualize to patient risk-factors, without clinical contact to interpret or personalize the SCP, is feasible and can produce a tool that lowers CTXD scores at 6 months in HCT survivors. Our study supports further development and implementation of individualized SCPs in this population that is at significant risk for late morbidity and mortality from transplantation. [Display omitted] DisclosuresMajhail:Anthem, Inc.: Consultancy; Sanofi: Honoraria.

Conditional Long-Term Survival Among Diffuse Large B-Cell Lymphoma (DLBCL) Patients Treated with Autologous Hematopoietic Cell Transplantation (AHCT)

Introduction: AHCT is standard therapy for chemosensitive relapsed DLBCL and survival from the time of AHCT has been well described in large patient cohorts. Outcomes have not been well described for patients who survive a certain time period after transplantation, when the risks of relapse have diminished. We performed a retrospective cohort study to delineate conditional survival in patients with DLBCL who survived 1, 2, and 5 yrs after AHCT. We also compare survival for these cohorts to their general population controls.Methods: We included 371 consecutive adult (≥18 yrs) patients with DLBCL who received AHCT at our institution from 2000-2014. 10-year overall survival (OS), progression-free survival (PFS), relapse mortality (RM) and non-relapse mortality (NRM) from AHCT were determined for three cohorts: 1-yr survivors (N=272), 2-yr survivors (N=232), and 5-yr survivors (N=157). Outcomes were estimated with Kaplan-Meier (OS, PFS) or cumulative incidence (RM, NRM). Cox regression analyses were performed to evaluate prognostic factors for OS and PFS. In addition, standardized mortality ratio (SMR) compared to the age-, gender- and race-matched healthy population was estimated for each survivor cohort.Results: Median age for 1-yr cohort was 56 yrs (19-78 yrs). 61% were male, 78% were stage III/IV and 45% had B-symptoms at diagnosis, 28% had received prior radiation and 81% had received prior rituximab. 77% patients received chemotherapy mobilization and Bu/Cy/VP was conditioning regimen for 97% patients. Median followup for this 1 yr cohort was 8 yrs (1.3-16.5 yrs). OS, PFS, RM and NRM at 10 yrs after AHCT are described in Table 1. OS and PFS improved with increasing survival after transplantation. Relapse was the primary cause of death in 1- and 2-yr survivors; cumulative incidence of RM and NRM was low but similar in 5-yr survivors. As expected, in multivariable analyses, lymphoma relapse prior to landmark time was associated with significantly worse OS and PFS for 1-, 2- and 5-yr survivors. Among other patient and disease characteristics evaluated in risk factor analysis, age and duration of AHCT hospitalization were the only factors associated with OS and PFS. Older age (10 yr increments) was associated with greater mortality risk among 1- and 2-yr but not 5-yr survivors. Older age at AHCT was associated with worse PFS in all three survivor cohorts. Prolonged hospital stay, as a surrogate for early post-transplant complications, was also associated with lower OS for all three cohorts, and lower PFS for 2-yr and 5-yr survivors. Survival was lower compared to the general population, although it improved and approached that of healthy peers with increasing post-transplant survival (SMR 4.0, 3.0 and 1.8 among 1-, 2- and 5-yr survivors, respectively, Figure 1).Conclusions: Conditional OS and PFS for DLBCL patients treated with AHCT improves with increasing survival post-transplantation. Relapse is the primary driver of poor survival, although the probability of death due to relapse decreases over time. NRM continues to be an important cause of treatment failure even among patients surviving 5-years after AHCT. Our data provide personalized survivorship information for DLBCL AHCT recipients and identify risk factors for poor survival. Our study also underscores the need for continued research on decreasing relapse risk and for surveillance for prevention and management of late-complications in this population. [Display omitted] DisclosuresKharfan-Dabaja:Incyte: Speakers Bureau; Alexion Pharmaceuticals: Speakers Bureau; Seattle Genetics: Speakers Bureau. Majhail:Anthem, Inc.: Consultancy; Sanofi: Honoraria.

We need to do better: Readability analysis of online patient information on cancer survivorship and fertility preservation

ObjectiveNational Institute of Health recommends that patient education material should be written at no greater than 6th-grade level. Cancer survivorship and fertility preservation discussion with patients is recommended by many national societies and being done more frequently. We sought to analyze online patient information on cancer survivorship and fertility preservation to see if they meet the criteria set by national guidelines. MethodsOnline patient information on cancer survivorship and fertility preservation was collected and analyzed by six of the most common readability tests. Only websites in English and free to access were used. ResultsA total of 15 separate websites for cancer survivorship and fertility preservation was used. All websites failed to meet national guidelines. Cancer survivorship information was written at a high school senior and a 12th-grade level. Fertility preservation information was written at a high school-senior and junior college level. ConclusionOnline patient information on cancer survivorship and fertility preservation did not meet national guidelines. Testing across six of the most used readability indexes showed that information is challenging to understand for the general patient population. Policy statementThis article shares an insight into the complex and growing fields of cancer survivorship and fertility preservation. Educating patients about their condition is critical and improves outcomes and participation in shared decision making. Healthcare policy should focus on implementing a system that will provide culturally and linguistically appropriate information in the community for patients about their disease.

What are the key barriers to the implementation of guideline recommendations for breast cancer survivors? Protocol of a mixed methods study

The cancer survival rate has increased and family physicians (FPs) follow cancer survivors who experience long-term problems. Clinical practice guidelines outline best practices in cancer survivor care, but most FPs are unaware of this information. Little is known about specific barriers to survivo rship guideline implementation in primary health care. Thus, our objectives are to identify patterns of FP non-use of survivorship guideline recommendations and describe key use-related barriers. The present paper reports a mixed methods study protocol that is implemented. Participants are FPs providing care to at least one breast cancer survivor. Quantitative component: Recommendations are integrated in a mobile application. Through this app, we deliver a weekly alert to one recommendation. FPs can rate recommendations using the validated Information Assessment Method (IAM) questionnaire. We will identify patterns of non-use of recommendations. Qualitative component: We will interview FPs who do not use a recommendation, identify use-related barriers, and assign them to themes related to information non-use. Integration: We will compare quantitative and qualitative results. We anticipate that results will identify unique barriers to implementation of survivorship information, as well as potential solutions and strategies to improve patient care, for example, information specialists producing and disseminating patient health information. Thus, finding barriers and solutions will contribute to the practice of informationists and FPs.

Survivorship care engagement with American Indian and Alaska Native survivors of gastrointestinal (GI) cancers.

814 Background: American Indian and Alaska Native (AI/AN) survivors are at significant risk for GI cancers, and also represent an underserved medical population. Gastrointestinal cancers represent the third most commonly diagnosed cancers in the AI/AN population and are a leading cause of death. Survivorship resources tailored for the AI/AN population are sparse and patterns of survivorship care poorly understood. Methods: The OncoLife survivorship care plan has been through the OncoLink website since 2007. The tool is free and publically available. It asks survivors to enter data regarding diagnosis, demographics, and treatments, and provides customized guidelines for future care. All research is IRB approved. Results: Over the past 12 years, the OncoLife tool has been utilized by &gt;85,000 persons, with survivors of GI cancer representing 10-12% of users each year. Most users are women (75%) and Caucasian (80%). American Indian and Alaska Native survivors represent &lt;1% of users since the launch of the tool. Of 519 AI/AN users, median age was 54 years, and 76% identified as female. Of plans created for AI/AN survivors, 13% were for survivors of GI cancers, with the most common GI diagnosis being colorectal cancer (74%), followed by pancreas (11%) and anal (6%). Most plans (73%) were created by HCP, with the remainder by survivors themselves; 20% of AI/ AN users completing plans requested information on smoking cessation as part of their care plan. Conclusions: American Indian and Alaska Native survivors represent a very small minority of survivors utilizing this free Internet-based tool, with most plans for this population being created by healthcare providers and not by survivors themselves. Future efforts should be directed at supporting this underserved population with survivorship information, particularly given high risk of morbidity and mortality related to GI cancers.