Survivorship Care Plans Research Articles

Survivorship care plans and adherence to breast and cervical cancer screening guidelines among cancer survivors in a national sample

PurposeThe impact of the components of survivorship care plans on adherence to cancer screening guidelines among cancer survivors is limited. We examined the association of receipt of treatment summaries, follow-up instructions, and type of doctor providing survivorship care with adherence to breast cancer screening (BCS) and cervical cancer screening (CCS) guidelines in female cancer survivors.MethodsA cross-sectional analysis using Behavioral Risk Factor Surveillance System (BRFSS) data from 2014, 2016 and 2018 was conducted. BCS and CCS-eligible women were aged 40–74 and 30–64, respectively. BCS adherence was defined as a mammogram within 2 years and CCS adherence as a pap smear within 3 years or HPV test within 5 years. Univariate analysis with chi-square and multivariable logistic regression are reported.Results5,001 BCS and 3,014 CCS-eligible survivors were identified. In the BCS group, recipients of treatment summaries and follow-up instructions were significantly more adherent with BCS (84.1% vs. 77.4%; 83.4% vs. 74%, respectively, p < 0.001). In the CCS group, recipients of follow-up instructions were significantly more adherent with CCS (78.1% vs. 67.7%, p < 0.001). In both groups, there was no significant difference in BCS or CCS based on type of physician providing care (p = 0.087). On multivariate analysis, receipt of follow-up instructions was the only factor significantly associated with BCS (OR:2.81; 95%CI:1.76–4.49) and CCS (OR:3.14; 95%CI:1.88–5.23).ConclusionsFollow-up instructions, as part of survivorship care plans, have the strongest association with BCS and CCS among female cancer survivors. Additional research should focus on improving the distribution of survivorship care plans, particularly follow-up instructions, as a method to increase BCS and CCS among cancer survivors.

Cancer survivorship and long-term outcomes: navigating the challenges beyond treatment

The increasing number of cancer survivors due to advancements in early detection and treatment has shifted the focus of oncology to the long-term health and well-being of these individuals. Cancer survivorship encompasses a wide range of challenges that extend beyond the completion of treatment, including physical, psychological, social, and economic issues. This review explores the long-term physical health consequences of cancer treatment, such as neuropathy, cardiotoxicity, and chronic conditions, and highlights the psychological burdens, including anxiety, depression, and cognitive impairment, commonly faced by survivors. The article also addresses the social and economic impacts, such as difficulties in returning to work and financial toxicity, which further complicate the survivorship experience. Additionally, the review emphasizes the importance of assessing and improving the quality of life (QoL) for survivors through personalized interventions and the implementation of survivorship care plans (SCPs). Emerging research on biomarkers, telemedicine, and policy advocacy is discussed as critical components for advancing survivorship care. The review concludes that a comprehensive approach, including ongoing research, personalized care, and supportive policies, is essential to meet the diverse needs of cancer survivors and improve their long-term outcomes and QoL.

Experiences and needs of colorectal cancer survivors in resource-limited countries: A qualitative descriptive study in Syria

PurposeColorectal cancer (CRC) is one of the three most prevalent cancers globally, with incidence rates projected to increase. CRC survivors face various challenges due to the disease and its treatments. However, there is limited evidence on the experiences and needs of CRC survivors in resource-constrained countries. This study aimed to explore the experiences and needs of CRC survivors in Syria and to identify perceived opportunities for improvement. MethodsA descriptive qualitative study design was employed, using semi-structured in-depth interviews with 12 adult CRC survivors who had completed treatment at least 6 months prior, selected through purposive sampling. Data were analyzed using an inductive thematic analysis approach. ResultsThe interviews revealed 15 major themes: 11 concerning the experiences of CRC survivors and four related to their needs. The survivors’ experiences included physical burden, psychological expressions, economic burden, social withdrawal, stigmatization, family and friend supports, cultural and social impact, religion and coping mechanisms, relationship with healthcare professionals, support from healthcare system. Their needs encompassed emotional and psychological, informational, financial, and sexual needs. ConclusionThis study highlights the unpredictable psychological, economic and physical burdens experienced by Syrian CRC survivors. Personalized care plans that address unmet needs of survivors are crucial to improving their quality of life. Prioritizing the development of comprehensive survivorship care plans that address the multifaceted needs of CRC survivors is crucial. Additionally, further qualitative research is essential to gain a deeper understanding of the challenges faced by these survivors and to inform the design of effective interventions.

Surviving is just the beginning: Exposing unmet needs of cancer survivors through a patient-informed lens.

214 Background: Despite advancements in survivorship care over the past two decades, cancer survivors continue to grapple with unmet needs that impact their quality of life. While survivorship care plans and clinical interventions have made progress in addressing physical health concerns, a substantial gap remains in delivering comprehensive biopsychosocial support. For the growing population of cancer survivors, varied degrees of toxicity and trauma persist. Research shows only 40% of survivors feel their healthcare providers adequately support their transition to post-treatment care (1). Methods: We conducted a qualitative study among survivors of varying Dx, grouped into 3 cohorts, with a two-pronged approach: semi-structured focus groups using “Experience Group” methodology identified domains of care gaps; followed by in-person, human-design workshops mapping perceived gaps in care based on lived experiences. We held 4 Experience Groups; posing open-ended questions (i.e., “what was a good day like w/ cancer?”) to 21 participants. A trained facilitator guided discussion based on emerging patterns in conversation. We utilized an inductive approach: data gathered from groups was used to define &amp; develop codes to categorize responses from in-person workshops into domains &amp; subdomains for care gaps. We held 3, 3-hour workshops in 9 months. Survivors were asked to explore “challenges or unmet needs in extended and long term survivorship.” We collected 628 qualitative data points from 24 total participants. Results: Participants identified 66 discreet unmet needs across 7 predominant domains: psychological/emotional, physical health and safety, social/relational, practical, education/information, financial, and existential/spiritual. Most common themes among cohorts included: 1) Mental health concerns: managing anxiety, depression, and existential dread. 2) Physical health: managing long-term effects, daily functioning, and quality of life. 3) Social health: building and maintaining support networks, caregiver support and healthy relationships. Second most common themes included: practical day-to-day concerns, financial and sexual health.Notably, young adult survivors expressed heightened financial and existential concerns. Conclusions: While these data exemplify common themes in current literature, they also point to the deep gap between clinical survivorship care plans and real-life support. These findings, while specific to Central Texas, hold implications for survivorship care nationally: increasing awareness and timely use of interdisciplinary interventions delivered outside the clinical setting are needed to comprehensively address the diverse needs of survivors. 1. NCCS, 2022.

Beyond breast cancer: An exploration of the experiences of middle-aged female breast cancer survivors in Australia

ObjectivesMiddle-aged women (i.e., aged 40–65 years) who live with, through and beyond breast cancer (survivors) are an under-researched population, particularly within an Australian context. The unmet needs reported within this population include fatigue, psychological distress, body image concerns, early-onset menopause, and a lack of information on these issues. This study explores how the experiences of breast cancer survivorship impact the lives of Australian middle-aged women. Study designQualitative analysis of written comments in an open text field of a survey completed by 644 women reporting breast cancer in the middle-aged cohort of the Australian Longitudinal Study of Women's Health gathered between 1996 and 2013. Data was collected from any participants who reported breast cancer in any survey. Researchers conducted a thematic analysis using consensus coding on data and identified key themes. Main outcome measuresAny data where participants described their experiences of breast cancer survivorship. ResultsThis cohort reported a unique experience of breast cancer survivorship due to their age group. Analysis developed the following themes: the middle-aged context of breast cancer; care and support, body changes, overcoming fears and maintaining balance; and finding a ‘new normal’. ConclusionsBreast cancer survivorship is a diverse experience. For many it involves chronic limitations and challenges. Investigation and application of survivorship care plans in Australia could benefit breast cancer survivors by including multidisciplinary health professionals in their care. Unmet needs and psychological distress were described by participants rather than biomedical concerns. Further recommendations include development of online support groups providing access to rehabilitation professionals, especially for otherwise isolated rural women.

“There is a life before and after cancer”: experiences of resuming life and unmet care needs in stage I and II melanoma survivors

Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors’ experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives.

Abstract C042: iCCaRE qualitative interviews for Black prostate cancer survivors and quality of life

Abstract Intro: Compared to white men, Black men bear the highest burden of prostate cancer, experiencing a higher incidence and mortality rate, and poorer survivorship outcomes. Although prioritized, survivorship and quality of life (QOL) are under-studied in the fight against prostate cancer disparities. To address this issue, clinicians, researchers, and community advocates have formed the Inclusive Cancer Care Research Equity (iCCaRE) Consortium for Black Men. iCCaRE’s goal is to advance the science and practice of survivorship focused on the needs of Black men and their loved ones affected by prostate cancer. Methods: We developed a survivorship care plan (SCP) tailored to the whole person's needs. IRB-approved qualitative methods to preliminarily gain evaluation and guidance on the SCP. The SCP presented content in the following areas: diagnosis and treatment, follow-up care/surveillance, family history, care team, major co-morbidities, symptoms and quality of life, survivorship concerns, and health advisories. Results: 23 Black prostate cancer survivors (PCS) participated and provided feedback on the SCP Mean age was 64 years. PCS diagnosed between 2018-2023 between stages 1-4. The Majority of PCS were provided information for follow-up and side effects. But none had received a comprehensive SCP All agreed that the SCP would contribute to enhancing cancer knowledge, patient activation, and shared decision, and their QOL, if the SCP was obtained. A survivor noted “having inspirational quotes throughout the SCP is important”. An unforeseen consequence to the interviews was the emotional release for the men, justifying the need for the SCP and an expansion of its scope. Domains that the men wanted more contents were social support, sexuality, masculinity, and maintaining a healthy lifestyle. All PCS understood the value of having trusted family and friends to bear the burden of the disease despite some not having a solid support system. PCS emphasized the role of family support stating, “my wife and children helped me stay positive”. Another critical lifestyle component that survivors mentioned was their sexuality and how it directly reflects their masculinity. Although PCS adapted to other forms of intimacy like couples’ activities and stronger communication with their partners, majority of men struggle with adapting to their sexual performance. A quote by a survivor encompasses the mindset expressed by many of the men fear “Like a track star in his prime who can’t run anymore”. Erectile Dysfunction can lead to fear and anxiety among survivors, ultimately affecting QOL. Lastly, PCS wanted more options to stay fit and healthy. Further research and resources are needed to address survivor concerns in this area. Discussion: Overall, PCS have acknowledged that the SCP can assist them in these areas of concern, but more research is required. Life after prostate cancer treatment is an ongoing process; while some survivors cope better than others, it is evident a need for more information and guidance is not being provided to all those affected. Citation Format: James Morrison, Kimlin Ashing, Gaole Song, John McCall, Timethia J. Bonner, Che Ngufor, Getachew A. Dagne, Arnold Merriweather, Ewan Cobran, Cassandra N. Moore, Fornati Bedell, Rotimi Oladapo, Floyd B. Willis, JoAnne S. Oliver, Ernie Kaninjing, Roxana Dronca, Folakemi T. Odedina. iCCaRE qualitative interviews for Black prostate cancer survivors and quality of life [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C042.

Abstract C034: Impact of survivorship care plans on self-reported health and functional well-being

Abstract Introduction: Cancer survivors have varying physical, psychosocial, and informational needs. Organizations such as American Society of Clinical Oncology have developed survivorship care plans (SCP) for cancer screening, treatment side effect management, and care coordination. There is a need to better understand SCP utilization among underserved and diverse patient communities. Methods: Adults ages 18+ years with breast or colorectal cancer diagnosed between 2019 and 2021 were recruited from the Greater Bay Area Cancer Registry. Participants completed a 30-minute survey about their survivorship plans, quality of life, health behaviors, and social support. Analysis: Overall comparisons between groups were evaluated with chi-square tests. Associations between demographic characteristics and receipt of any type of survivorship plan were evaluated with univariate binomial logistic regression models, and associations between receipt of any type of survivorship plan and health/well-being outcomes were assessed using univariate ordinal regression models. Multivariable models will be built using relevant variables. Results: Participants (n=872) were on average 59 years (range=24-95) and mostly female (70.2%). Participants had either breast (41.3%) or colorectal cancer (58.7%). Participants were American Indian/Alaska Native (AIAN) (1.0%), Asian American (18.2%), NH Black (12.8%), NH White (38.0%), LatinX (29.0%), and Native Hawaiian or Pacific Islander (0.8%). Receipt of a SCP was reported by 258 (29.6%) participants, 328 (37.6%) had another type of post-treatment guide provided to them, and 224 (25.7%) were not offered any kind of survivorship plan. There were no differences in race/ethnicity, nativity status, non-English language spoken at home, marital status, or educational attainment between those who received any kind of survivorship plan vs. no plan. Being female was associated with 40% lower odds of receiving any kind of survivorship plan (OR=0.60, 95%CI=0.42-0.87). Being on public insurance was also associated with lower odds of receiving a survivorship plan than being on private insurance (OR=0.59, 95%CI=0.43-0.81). Receipt of a survivorship plan was associated with 52% higher odds of reporting a higher level of overall current health (OR=1.52, 95%CI=1.14-2.02) compared to those who did not receive any plan. Receiving a survivorship plan was also associated with higher odds of reporting a higher level of ability to work (OR=1.58, 95%CI=1.18-2.11), more fulfilling work (OR=1.69, 95%CI=1.27-2.23), ability to enjoy life (OR=1.55, 95%CI=1.17-2.06), ability to sleep well (OR=1.35, 95%CI=1.03-1.79), and contentment with their current quality of life (OR=1.51, 95%CI=1.14-1.99). Conclusion: Receipt of any survivorship plan was associated with higher levels of self-reported current overall health and measures of functional well-being. Women, as well as people on public insurance, are less likely to receive a survivorship plan, highlighting disparities in survivorship care planning for these populations. Citation Format: Aly M. Cortella, Katarina Wang, Debby Oh, Niharika Dixit, Zinnia Loya, Kathie Lau, Michelle Wadhwa, Chris Duffy, Salma Shariff-Marco, Kristan Olazo, Vlad Honcharov, Marika Dy, Urmimala Sarkar, Scarlett Lin Gomez. Impact of survivorship care plans on self-reported health and functional well-being [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C034.

Abstract B043: Improving quality of life for Hispanic breast cancer survivors: A culturally tailored education intervention

Abstract Purpose: To evaluate the effectiveness of the Breast Cancer Education Intervention (BCEI) program in increasing knowledge and awareness of survivorship topics among survivor advocates and survivors, and to assess the impact of survivorship care plans on quality of life. Breast cancer survivorship care is crucial for improving the quality of life among survivors. Hispanic/Latino women face greater challenges and disparities in accessing survivorship care due to cultural, socioeconomic, and systemic barriers. The BCEI program, adapted from the National Cancer Institute’s model, aims to address these disparities through culturally tailored survivorship education and support. Methods: The BCEI program was piloted with a group of 8 Hispanic/Latino breast cancer survivors, in collaboration with Cancer Support Community Arizona (CSCAZ). This six-month program, created and delivered in Spanish, consisted of bi- monthly in-person sessions and phone check-ins. The educational sessions featured topics such as emotional and physical changes, lifestyle behaviors, nutrition, exercise, and psychological distress along with the introduction of a personalized survivorship care plan. These sessions provided a sense of community and emotional support with essential knowledge and understanding of the cancer journey, addressing gaps caused by language barriers in clinical settings, and the lack of Spanish language support groups. Survivor advocates underwent specialized training to effectively support the survivor participants. Data for the BCEI program was collected through pre and post survey evaluations, participant check-ins, and qualitative feedback. Survivors were paired with bilingual Patient Navigators, who connected them to resources in the community. Results: Preliminary results show a significant improvement in survivors’ knowledge and satisfaction with survivorship care. Participants demonstrated an increased awareness of the importance of survivorship care plans and showed positive changes in lifestyle behaviors. The results highlighted the program’s cultural tailoring and sense of community as key success factors. Conclusion: The Breast Cancer Education Intervention program demonstrates potential in addressing health disparities in breast cancer survivorship among Hispanic/Latino women. Building on this success, we are expanding the BCEI program to include a second iteration focused on Black and African American breast cancer survivors, who also face similar challenges and disparities. The program will be implemented in collaboration with the Coalition of Blacks Against Breast Cancer (CBBC). Citation Format: Idali Cuellar, Farhia M. Omar. Improving quality of life for Hispanic breast cancer survivors: A culturally tailored education intervention [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B043.

Lesbian and bisexual breast cancer survivors' post-treatment resource needs.

The purpose of our study was to identify and describe determinants of lesbian and bisexual breast cancer survivors' post-treatment resources. We used a cross-sectional descriptive study design. The data reported here were gathered as part of OUT: The National Cancer Survey, administered electronically from September 2020 to March 2021 via social media and community partners. We used descriptive statistics, Fisher's exact tests, and thematic analysis to analyze survivor perceptions of information availability, treatment environment, care plans, social support, and health. Of those who participated in the survey, (N =430) 366 identified as lesbian, and 64 identified as bisexual. Mean age was 58.6 years (range 21 - 91 years). Fewer than 11% of our sample indicated they could find helpful information about being a queer person with cancer during their treatment. Over 75% of our sample that received a cancer survivorship care plan indicated that their plan did not include resources for queer individuals. Affirming cancer treatment environments and resources tailored to the needs of lesbian and bisexual breast cancer survivors are critical for reducing disparities. Survivorship care plans should include resources for queer individuals as a part of holistic cancer care.

Distressed personality is associated with late adverse effects in long-term survivors of Hodgkin lymphoma.

There are few studies of personality traits in long-term Hodgkin lymphoma survivors (HLSs) treated according to contemporary stage-and risk-adapted approaches. The Distressed Personality (DP) Scale covers negative affectivity and social inhibition. We examined differences in self-reported late adverse effects (LAEs) between HLSs with and without DP and other explanatory variables. This cross-sectional questionnaire-based study included a population-based cohort of HLSs treated from 1997 to 2006, aged 8-49 years at diagnosis, and alive in 2016. Among 518 eligible HLSs, 303 responded (58%), and 294 completed the DP scale. DP was defined by scores above cut-off on both the negative affectivity and social inhibition subscales. LAEs studied were major depression, posttraumatic stress disorder, sleep problems, obesity, neuropathy, fatigue, memory problems, and general health. DP and 10 other explanatory variables were tested against LAEs as dependent variables in multivariable regression analyses. The mean age at survey was 45.9 years (standard deviation [SD] 4.6), mean follow-up time 16.7 years (SD 3.0), and 48% were females. Eighty-two HLSs had DP (28%, 95% confidence interval 23% - 33%). All LAEs except obesity were significantly more common/had higher mean score in HLSs with DP. In multivariable analyses, presence of DP was significantly associated with all LAEs except obesity. The presence of DP is common among HLSs. The presence of DP was associated with most self-report LAEs examined. Including assessment of personality traits in the survivorship care plans of HLSs should be considered. Prospective studies assessing the influence of pretreatment DP on LAEs are warranted.

Cancer Survivorship Care in the United States at Facilities Accredited by the Commission on Cancer

Since 2021, American College of Surgeons Commission on Cancer (CoC) accreditation standards require providing a survivorship program for patients with adult-onset cancer treated with curative intent. Since more than 70% of all patients with cancer in the US are treated at CoC-accredited facilities, this presents an opportunity for a landscape analysis of survivorship care availability. To determine the prevalence, types, and outcomes of cancer survivorship services at CoC-accredited facilities. This survey study used an anonymous, online, cross-sectional survey conducted from May 4 to 25, 2023. Participants were CoC-accredited facilities in the US representing diverse CoC program categories, institutional characteristics, geographic regions, and practice types. Department of Veterans Affairs cancer programs were excluded due to data usage restrictions. Data were analyzed from July to October 2023. CoC Survivorship Standard 4.8 was released in October 2019 and programs were expected to adhere to the Standard beginning January 1, 2021. Questions included self-reported survivorship program characteristics, availability of services aligned to CoC Survivorship Standard 4.8, and perceived program impacts. Response frequencies and proportions were determined in aggregate and by CoC program category. There were 1400 eligible programs, and 384 programs participated (27.4% response rate). All regions and eligible program categories were represented, and most had analytic caseloads of 500 to 4999 patients in 2021. Most survivorship program personnel included nurses (334 programs [87.0%]) and social workers (278 programs [72.4%]), while physical (180 programs [46.9%]) and occupational (87 programs [22.7%]) therapists were less common. Services most endorsed as available for all survivors were screening for new cancers (330 programs [87.5%]), nutritional counseling (325 programs [85.3%]), and referrals to specialists (320 programs [84.7%]), while treatment summaries (242 programs [64.7%]), and survivorship care plans (173 programs [43.0%]), sexual health (217 programs [57.3%]), and fertility (214 programs [56.9%]) were less common. Survivorship services were usually delivered by cancer treatment teams (243 programs [63.3%]) rather than specialized survivorship clinics (120 programs [31.3%]). For resources needed, additional advanced practice clinicians with dedicated survivorship effort (205 programs [53.4%]) and electronic health record enhancements (185 programs [48.2%]) were most endorsed. Lack of referrals and low patient awareness were endorsed as the primary barriers. A total of 335 programs (87.2%) agreed that Survivorship Standard 4.8 helped advance their programs. These findings of this survey study of CoC-accredited programs establish a benchmark for survivorship care delivery in the US, identify gaps in specific services and opportunities for intervention, contribute to longitudinal reevaluation for tracking progress nationally, and suggest the value of survivorship care standards.

Voices of Black men: reflecting on prostate cancer survivorship care plans.

This study addresses the critical issue of survivorship care for Black prostate cancer survivors. The aim was to explore their awareness of survivorship care plans to improve prostate cancer care and survivorship within this high-risk group. Utilizing a thematic analysis approach, we conducted in-depth interviews focused on analyzing post-treatment experiences of Black prostate cancer survivors by applying interpretive explanations to data collected from participants. Participants reported a significant gap in survivorship care plan communication post-treatment, as these plans were seldom discussed. Survivors highlighted the adoption of post-treatment strategies and self-education as means to enhance their comprehension of the survivorship process. Black survivors demonstrated an intrinsic motivation, after feeling "discarded," to find suitable resources to enhance their survivorship care for a better quality of life. The prioritization of post-treatment care for Black prostate cancer survivors is important. By offering comprehensive post-treatment education, improving symptom transparency, and establishing safe spaces for open discussion, the quality of life of Black survivors may be substantially improved. There is a pressing need for dynamic post-treatment care coordination tailored to Black prostate cancer survivors. A lack of crucial post-treatment education for this population that experiences disproportionate burden of prostate cancer may exacerbate cancer health disparities. Addressing this care coordination gap may improve support systems, survivor well-being, and better cancer outcomes.

Survivorship after Hodgkin lymphoma and the right to be forgotten.

The significantly improved survivorship in Hodgkin lymphoma is fraught with challenges, including persistent symptoms, secondary health complications, and socio-professional obstacles. This review highlights the need for comprehensive survivorship care plans that include detection of relapse, assessment of long-term side effects, screening for secondary cancers, psychological support, and assistance with socio-professional integration. Cardiovascular diseases, secondary malignancies and other associated risks remains an important problem related to the effective treatment of patients with Hodgkin lymphoma. Furthermore, fertility concerns and endocrine disorders remain prevalent issues posttreatment. An optimal evaluation of the risks before and after treatment is essential to reduce the impact of these side effects on quality of life. Addressing the socio-professional reintegration of survivors, the concept of the 'Right to be forgotten' emerges as a critical consideration. This principle seeks to eliminate discrimination against cancer survivors in accessing financial services and aims for legislative changes to ensure that past cancer diagnosis does not unfairly affect survivors' futures. Implementation of this 'Right to be forgotten' in the legislature, is currently underway in European countries. The focus of survivorship care has shifted towards the holistic management of these long-term outcomes. Quality of life for Hodgkin lymphoma survivors is affected by various treatment-related factors, with evidence suggesting that physical, psychological and socio-professional domains remain impacted years after treatment.

A scoping review of the evidence on survivorship care plans among minority, rural, and low-income populations.

Despite recent advances in cancer control and the number of cancer survivors increasing substantially over the past years, some cancer survivors continue to experience disparities due to barriers to recommended survivorship care. The use of survivorship care plans (SCPs) may be a way to help care for these individuals and their respective issues after they complete their primary treatment. The purpose of this scoping review is to understand the evidence on SCPs among minority, rural, and low-income populations: groups that experience disproportionately poorer cancer health outcomes. Computer-based searches were conducted in four academic databases. We included peer-reviewed studies published in the English language and conducted in the USA. We systematically extracted information from each paper meeting our inclusion criteria. Our search identified 45 articles. The 4 major themes identified were (1) disparities in the receipt of SCPs where populations experience unmet needs; (2) benefits of SCPs, including improved care coordination and self-management of cancer; (3) needs and preferences for survivorship care; and (4) barriers and facilitators to using SCPs. Despite the potential benefits, underserved cancer survivors experience disparities in the receipt of SCPs and continue to have unmet needs in their survivorship care. Survivorship care may benefit from a risk-stratified approach where SCPs are prioritized to survivors belonging to high-risk groups. SCPs are a tool to deliver quality care for cancer survivors. While evidence is mixed on SCPs' benefits among the general population, SCPs show promise for underserved populations when it comes to proximal outcomes that contribute to disparities.

Applying Implementation Science to Identify Primary Care Providers' Enablers and Barriers to Using Survivorship Care Plans.

Primary care providers (PCPs) have been given the responsibility of managing the follow-up care of low-risk cancer survivors after they are discharged from the oncology center. Survivorship Care Plans (SCPs) were developed to facilitate this transition, but research indicates inconsistencies in how they are implemented. A detailed examination of enablers and barriers that influence their use by PCPs is needed to understand how to improve SCPs and ultimately facilitate cancer survivors' transition to primary care. An interview guide was developed based on the second version of the Theoretical Domains Framework (TDF-2). PCPs participated in semi-structured interviews. Qualitative content analysis was used to develop a codebook to code text into each of the 14 TDF-2 domains. Thematic analysis was also used to generate themes and subthemes. Thirteen PCPs completed the interview and identified the following barriers to SCP use: unfamiliarity with the side effects of cancer treatment (Knowledge), lack of clarity on the roles of different healthcare professionals (Social Professional Role and Identity), follow-up tasks being outside of scope of practice (Social Professional Role and Identity), increased workload, lack of options for psychosocial support for survivors, managing different electronic medical records systems, logistical issues with liaising with oncology (Environmental Context and Resources), and patient factors (Social Influences). PCPs value the information provided in SCPs and found the follow-up guidance provided to be most helpful. However, SCP use could be improved through streamlining methods of communication and collaboration between oncology centres and community-based primary care settings.

Survivorship care plans and fear of recurrence in patients with breast cancer (BC).

e13790 Background: A survivorship care plan (SCP) is recommended for all patients after curative treatment for cancer. It typically includes guidance on the type and interval of follow-up care as well as education on treatment received and potential long-term side effects. Fear of recurrence is a common unmet need reported by cancer survivors and is associated with higher depression and lower social functioning. It is unknown if SCPs are associated with reduced fear of recurrence. Methods: Between 7/2023-8/2023, active patients and survivors were recruited from Breastcancer.org and consented to participate in an anonymous online survey in English or Spanish. Eligibility included: US resident, age ≥18, and diagnosed with BC within the past 10 years. Survey assessed engagement in and satisfaction with survivorship care, receipt of a written SCP, and fear of recurrence (via the validated 9 question FCRI-SF, scored 0-36, higher scores indicate greater fear of recurrence) in patients with non-metastatic BC. Multivariate analysis (MVA) assessed relationship of SCP and FCRI-SF score ≥22 (indicating a clinically significant level of fear) after controlling for gender, age, race, ethnicity, and education. Results: Of 997 who completed the survey, 340 (34.1%) had completed all curative treatment and thus queried on receipt of SCP and fear of recurrence. Of this cohort, 97.4% identified as women, 78.8% White, 6.2% Black, and 3.3% Hispanic. Median age was 63 (interquartile range IQR 54-70) and median time since diagnosis 2.5 years (IQR 1.4-5.2). 76.2% had a college degree. Most were satisfied with their survivorship care (median score 4: scale: 1-very unsatisfied to 5-very satisfied). Less than a quarter (21.8%) had access to a cancer survivorship program at their facility; 60.0% did not; and 18.2% did not know. Of the 74 respondents who had access to a program, 56.8% used its services. 32.1% participants reported receiving a written SCP, 18.5% did not remember; almost half (49.4%) reported they did not receive one. Of those that received a SCP, most reported it was explained well to them (median score 4; scale: 1-poor to 5-excellent), and that they had “excellent” comprehension of the plan (median score 5). Median fear of recurrence score was 20 (IQR 14-25); 43.2% had a score ≥22, indicating a clinically significant level of fear. On MVA, patients who were older (OR 0.98, 95%CI 0.96-1.00, p=0.019) and who had received a SCP (OR 0.54, 95%CI 0.33-.88, p=0.013) were less likely to have clinically significant fear. Conclusions: Although overall satisfaction with survivorship care was high, less than one-third of surveyed BC survivors reported receiving a written SCP. Receipt of a SCP was associated with clinically significantly lower fear of recurrence. Future research should focus on provider barriers to SCP implementation, patient barriers to survivorship program use, and explore the role of SCP in mitigating psychosocial distress in diverse samples.

Automated survivorship care plan generation using large language models.

e13595 Background: Cancer survivorship, particularly from post-treatment to end-of-life, faces challenges such as communication gaps and coordination issues, leading to suboptimal care. A survivorship care plan (SCP) is a summarized record of patient cancer history and treatments, along with follow-up care recommendations. Despite extensive survivorship care guidelines from national cancer organizations, their adoption remains limited. Moreover, creating SCPs is time-intensive and burdensome for healthcare providers due to workforce limitations, hindering efficient personalization of care plans. Our study aims to address these issues by employing large language models (LLMs) to generate personalized SCPs. Methods: We introduce SurvGPT, a customized LLM designed to generate personalized SCPs focusing on its two main sections: the treatment summary and the follow-up care plan. Initially, our method extracts information from the structured and unstructured patient records to generate the treatment summary. Subsequently, it retrieves relevant context from a survivorship knowledge base crafted from existing medical literature and guidelines to generate a customized follow-up care plan. To mitigate LLM-related challenges such as hallucinations, our method ensures that the generated follow-up care plan is grounded on existing medical knowledge with a self-checking mechanism. Results: We created synthetic patient data based upon clinical inputs by a medical oncologist and an internist. We conducted a preliminary study using synthetic lung cancer patient EHR data to evaluate our approach. The evaluation focused on several key dimensions to validate the quality of the generated SCPs, including comprehensiveness, personalization, clarity, and actionable recommendations. The results presented in the table suggest promise for this approach yet also need for additional refinements both in degree of details extracted for ongoing care and then in formatting for effective use. The results also illustrate the complexity of generating synthetic cases for this work whose similarity to real patient care improved with iteration yet remained on occasion perceptibly different from current practice as noted by our clinical oncologist team member. Conclusions: In conclusion, our study demonstrates the potential of SurvGPT for generating personalized SCPs. The results of the preliminary results suggest that this approach is technically feasible with further validation required using real patient data. [Table: see text]

Communicating cardiovascular health information and improving coordination with primary care: A Childhood Cancer Survivor Study randomized trial.

10011 Background: Childhood cancer survivors are at risk of early cardiovascular disease (CVD). We conducted a survivorship care plan (SCP)-based counseling intervention to improve CVD risk factor control in adult-aged survivors. Methods: Randomized (1:1) trial of survivors at high CVD risk based on history of anthracycline or chest radiotherapy exposures with undertreated hypertension (≥130/80 mmHg), dyslipidemia (LDL ≥160 mg/dL or triglyceride ≥200 mg/dL), and/or glucose intolerance (threshold varied if history of pre-diabetes or diabetes) based on in-home testing. Approximating a survivorship clinic visit, the intervention consisted of a remotely delivered session with an advanced practice provider to review results, a SCP with personalized CVD risk information, and an action plan to help manage CVD risk factors. A remote booster session was provided 4 months later with the action plan updated. Control participants only received a copy of their in-home results with abnormalities noted and written encouragement to follow-up with their primary care provider (PCP). Blood pressure, lipid profile, and glucose tolerance were retested after 1y. For both groups, all participant materials were sent to PCPs throughout the study, and PCP medical records were abstracted at study completion. Logistic regression assessed the odds ratio (OR) for undertreatment at 1y associated with the intervention, adjusting for pre-specified variables (sex, current age, time since cancer, insurance status, recent history of survivorship clinic visit, and undertreated CVD risk factor). Results: Among 644 survivors who completed in-home testing, 347 met inclusion criteria and were randomized (175 intervention; overall 52% male, mean age 40y, 31y since cancer diagnosis); 264 with 1y follow-up (126 intervention). At baseline, rates of hypertension, dyslipidemia, and glucose intolerance were 53%, 52%, and 49%, respectively; 43% had &gt; 1 undertreated condition. Although the intervention achieved &gt; 95% satisfaction, it was not associated with reduced undertreatment vs control (OR 0.9, 95% CI 0.7-1.3). Notably, 48% of intervention and 44% of control participants had less undertreatment after 1y. In secondary analysis, greater internal locus of control was associated with less undertreatment at 1y (OR 0.7, 95% CI 0.6-0.9). The intervention group was more likely than controls to have CVD risk (+10 vs -1%), SCP (+17 vs -2%), and some late effects surveillance plan (+8 vs +2%) documented within PCP records at 1y vs baseline (p &lt; 0.05 for all). Conclusions: While a remotely delivered counseling intervention did not reduce CVD risk factor undertreatment compared with provision of test results alone, both study arms had &gt; 40% reduction in undertreatment. These results suggest that simply providing a formal CVD risk assessment to high-risk cancer survivors and their PCPs may be effective. Clinical trial information: NCT03104543 .

Understanding and comparing the views of specialty care providers and PCPs on addressing cancer survivorship needs via survivorship care plan portal.

e13799 Background: Individuals with colorectal cancer (CRC) experience persistent and disabling symptoms across the care trajectory. Consequently, Survivorship Care Plans (SCPs) have been developed to assist patients in navigating these experiences. However, there are mixed results regarding its effectiveness and implementation in helping cancer survivors. The purpose of this qualitative study is to explore and compare the attitudes of cancer specialists and PCPs on current practices for survivorship care coordination, and to identify potential barriers and facilitators to implementing a SCP-PHR tool. Methods: Semi-structured interviews were conducted with 22 providers involved in cancer care, including specialty care providers (n=16) and primary care providers (n=6). The interview guide was based upon the Consolidated Framework for Implementation Research (CFIR). The current analysis focused solely on the “tension for change” domain. Two researchers analyzed individual transcripts using a combined thematic approach (inductive and deductive) to identify common themes and important findings. Results: While multiple barriers were identified, care coordination/communication among different specialties emerged as a notable challenge. Providers indicated that a lack of well-defined responsibilities between various specialties led to challenges in providing proper follow-up care. Most providers had not routinely utilized SCPs in their practice. Several specialty care providers expressed uncertainty about who handles follow-up care (n=11; 68.7%) while others believed that PCPs or nurses should bear that responsibility (n=5; 31.2%). In contrast, many PCPs voiced that follow-up care responsibility should fall to oncologists (n= 5, 83.3%) due to provider burden and lack of familiarity with cancer symptomatology. As a result, providers noted that patients are not receiving adequate information about their care and are unaware of their treatment needs. Specialty care providers expressed concerns that areas of non-cancer symptom management and preventive care are not being adequately addressed alongside cancer-specific symptoms. Primary care providers echoed similar concerns and noted that care tools, like SCP-PHRs and warm hand-offs, could be implemented to address these concerns. Conclusions: Barriers surrounding survivorship care coordination underscore the need for creating a efficient SCP-PHRs, as providers seek support in providing care information to patients. Providers suggested a virtual platform should be structured in a concise format that delivers comprehensive information tailored to individual needs and addresses symptoms across all stages of their cancer continuum. Future studies may focus on understanding differences in perspectives among those who have actively engaged with SCPs in their care practices.