Comparison of Provider - Versus Patient-Reported Late and Long-Term Effects (LLTEs) Following Cancer Treatment: Results from an Internet-Based Survivorship Care Plan (SCP) Tool

2018 ◽  
Vol 102 (3) ◽  
pp. S33-S34
Author(s):  
M. Frick ◽  
C. Vachani ◽  
M.K. Hampshire ◽  
C. Bach ◽  
K. Arnold-Korzeniowski ◽  
...  
Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4123-4123
Author(s):  
Sanghee Hong ◽  
Jing Zhao ◽  
Ji-Hyun Lee ◽  
Nosha Farhadfar ◽  
Jean C. Yi ◽  
...  

Abstract 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. Figure 1 Figure 1. Disclosures Hong: 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.


2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9608-9608
Author(s):  
Ruth Rechis ◽  
Carla Bann ◽  
Stephanie Nutt ◽  
Linda Squiers ◽  
Naveen Rao

9608 Background: There are more than 14 million cancer survivors in the US – a number that is on the rise. Care coordination resources will be essential to provide support to this growing population. Key stakeholders, including the Commission on Cancer (CoC) and the Institute of Medicine, have proposed survivorship care plans (SCPs) as a way to extend support. However, limited research has been conducted to date on SCPs. Methods: In 2012, the LIVESTRONG Foundation (LIVESTRONG) administered a survey to understand the role of a treatment summary (TS) and SCPs and how they fit into survivors’ care. Logistic regression models were conducted to identify factors associated with receiving SCPs or TS. Results: 5,303 survivors responded to these questions (Table). While 92% of these respondents received information about where to return to for cancer check-ups, only 51% reported receiving a TS and 17% reported receiving a SCP. Survivors who were more likely to receive SCPs if they had a navigator (p<.001) and if they were male, Black, had finished treatment within the past year, or received care at a university-based medical center or community cancer center (p < 0.05). Also, those receiving a SCP were significantly more likely to have had a detailed discussion with a provider regarding long-term side effects, emotional needs, and lifestyle recommendations. Specifically, 60% of those with a SCP discussed long-term effects compared to 39% who did not. Conclusions: Results here indicate that few survivors receive SCPs but survivors reported benefits from receiving them. Currently many workflow barriers impede delivering SCPs, and LIVESTRONG is working with key stakeholders including the CoC to automate the LIVESTRONG Care Plan powered by Penn Medicine’s OncoLink through a registry and EMR system to understand how to address this issue. [Table: see text]


2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20567-e20567
Author(s):  
Rutika Mehta ◽  
Rohit Jain ◽  
Lori Rhodes ◽  
Joseph Abraham ◽  
Kenneth David Miller

e20567 Background: Long-term cancer survivors require comprehensive care. The purpose of this study was to describe how survivorship care fits into oncologists’ clinical time, and characterize long-term cancer survivors’ problems and oncology follow-up care. Methods: We abstracted 18,882 medical records of unique cancer patient visits during 2010 at a major NCI-designated cancer center and then evaluated survivor care for one week in April, 2010 to characterize how oncologists spend their clinical time. Finally, we selected three subgroups from the survivor population (n≈100 each) of survivors at 1-5 years, 6-10 years, and >10 years after diagnosis. We collected demographic data, purpose of visit, cancer-specific information, late and long-term effects, and type of care delivered, including surveillance for recurrence, intervention, prevention, and coordination of care. Results: In the larger group of 18,882, only 14% of survivors were more than 10 years post-diagnosis. Approximately two-thirds of the survivors were women. Breast cancer survivors comprised 38%, and survivors of hematologic malignancies accounted for 21% of the population. During the one week studied, the majority of oncologists' patients (74%) were actively receiving treatment; only 5% of their patients were 5 or more years post-diagnosis. Second or secondary malignancies were noted in 8% of patients. Late and long-term effects were uncommon. Approximately 25% of survivors beyond five years were observed to have late effects due to cancer treatment, most common being fatigue, neurological endocrine, and cardiac. Of the 300 selected survivors, sixty-two percent received only surveillance care during their visit. Only 3% of these patients received an entire array of survivorship care that included surveillance, intervention, co-ordination and prevention. Conclusions: A small proportion of oncologists’ visits were with long-term cancer survivors (5-14%) of whom only 25% had late or long-term effects of cancer treatment so overall very few of office visits were with long-term survivors who had late and long-term complications. All visits involved surveillance for cancer recurrence but there was little focus on prevention, intervention, and coordination of care for cancer survivors.


2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 174-174
Author(s):  
Natalie Garces ◽  
Daisuke Goto ◽  
Carol J. Farhangfar ◽  
Tara Eaton

174 Background: Survivorship Care Plans (SCPs) are endorsed by cancer advocacy groups and required for accreditation, yet benefits are unclear. The purpose of this quality initiative was to assess the benefit of SCPs. Methods: From June 2015 to September 2017, survivors who had a SCP visit were surveyed to report their understanding of key survivorship topics pre/post visit; the most valuable information learned and plans to use the information. Descriptive statistics and qualitative analysis were performed. Subgroup analysis was performed for age, insurance, marital status, and race. Wilcoxon signed-rank test computed statistical significance. Results: Of 794 surveys, 657 (83%) were complete and evaluable. Surveys were collected from breast (436 [66%]), lung (45 [7%]), colorectal (33 [5%]), head and neck (25 [4%]), melanoma (24 [4%]), endometrial and ovarian (20 each [3%]), and other (54 (8%) cancer survivors. Statistically significant ( p<0.05) improvements in all questions (Table 1) were noted across nearly all disease sites. Exceptions were endometrial, head and neck, and melanoma, which already had > 75% answering “completely understand” for selected questions pre- SCP visit. Subgroup analysis found no significant differences. Self-management was a theme in the “other” insurance status subgroup (14) qualitative analysis. Four (36%) indicated an interest in information about programs to improve healthy behaviors. Conclusions: There was major positive impact of the SCP visit on patient-reported understanding of all survivorship topics. Providers may benefit from focusing SCP discussion on areas the survivor reports as “some” or “no” understanding pre- SCP visit. Providers should connect survivors to resources to support self-identified needs. [Table: see text]


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21596-e21596
Author(s):  
Talya Salz ◽  
Mary S. McCabe ◽  
Kevin C. Oeffinger ◽  
Rebecca B Schnall ◽  
Stacie Corcoran ◽  
...  

e21596 Background: Survivorship care plans (SCPs) typically include generic advice for the management of late effects (LEs) that can occur, rather than addressing LEs that the survivor actually has. We developed a platform called HN-STAR that uses electronic patient-reported outcomes (ePROs) and evidence-based LE management to generate a personalized SCP for survivors of head and neck cancer (HNC), a population vulnerable to various LEs. We assessed HNC survivors’ experiences with HN-STAR to ensure its acceptability and usefulness. Methods: Disease-free HNC survivors at two cancer hospitals used HN-STAR in conjunction with a routine survivorship visit. Prior to the visit, survivors used a validated ePRO measure (PRO-CTCAE) to report up to 22 physical LEs. Based on clinic visit discussions, HN-STAR generated an SCP that included a treatment summary and LE management plans. Survivors indicated their level of agreement to statements regarding the ease of use of the ePROs, content of the SCP, and intentions to adhere to LE management recommendations. Results: 47 survivors completed surveys (mean 5.4 years from treatment completion). Most were white (89%), male (85%), had an oropharynx tumor (58%), and received multimodality therapy (81%). More than half (51%) experienced at least 9 of the 22 LEs in the last 30 days (mean 8.2 per person). Most survivors reported that completing ePROs improved the discussions with their provider (98%), the quality of their care (96%), and their communication with their provider (98%). 91% agreed the SCP was the right length, and 98% agreed it was easy to follow. 98% intended to follow at least some of the recommendations for LEs management, and 98% reported feeling confident that they could follow the recommendations. The majority agreed that the SCP accurately summarized the clinic visit (98%), they would refer back to the SCP (98%), they trust the SCP (100%), and they plan to share the SCP with a primary care provider (87%). Conclusions: Among HNC survivors, an automatically generated SCP that was tailored to their LEs was acceptable, was trusted, and provided recommendations they intended to follow. Patient-centered SCPs that focus on existing LEs hold promise as a means to help survivors manage LEs.


2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 39-39 ◽  
Author(s):  
Kelly Bugos ◽  
Sarah Stenger ◽  
Andrea Segura Smith ◽  
Laura Johnston ◽  
Morgan Gross ◽  
...  

39 Background: AlloBMT patients are at risk for chronic morbidity and late effects. Prior to 2015, the Stanford BMT program conducted group classes at three months post-transplant to prepare alloBMT patients and their families for the transition to survivorship, but no formal cancer survivorship program existed. Cancer survivorship care is required by the Foundation for the Accreditation of Cellular Therapy ( FACT). In order to fill this gap, we developed a standardized pathway to survivorship care for alloBMT survivors. Aim: To implement an initial cancer survivorship care consultation with comprehensive symptom assessment, late effects monitoring, and development of a survivorship care plan (SCP) three to six months after alloBMT. Methods: Standard work was implemented including patient introduction to survivorship by the BMT nurses and Advanced Practice Providers [APP] and during group ‘moving home’ class; responsibility for referral to survivorship; metric tracking, and administration of patient survey. The survivorship visit included an evaluation by the patient’s BMT social worker, introduction to post-BMT nurse coordinator and consult with cancer survivorship APP. Eligible patients were alloBMT recipients receiving care in the outpatient setting. Results: From July 28, 2015 to January 25, 2016, 90% (66/72) of eligible alloBMT patients were referred to cancer survivorship by day 100, 66% (42/66) of referred patient s were seen in survivorship clinic by day 180, 33% (22/66) deferred the visit or were unreachable, 1% (2/66) died. Of the 42 patients who received a cancer survivorship visit, 38% (13/42) responded to a post-visit survey. Responses indicated the patients believed their health goals and needs were addressed, and a SCP in the context of a comprehensive visit was valuable. Conclusions: Integrating standardized cancer survivorship care into the alloBMT recovery period is feasible, satisfactory to patients, and adds a structured approach for long-term effects monitoring and treatment. Early experience and patient surveys demonstrate value in an individual visits 3-6 months after alloBMT with a focus on returning to life and goal oriented post-transplant care.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 10519-10519
Author(s):  
Hira Latif ◽  
Patrick Martone ◽  
James Edward Shaw ◽  
Eric Wisotzky ◽  
Asma Ali Dilawari

10519 Background: Advances in early detection, therapeutics, and an aging population are expected to lead to an increase in the number of cancer survivors in the United States to 20 million by year 2026. The Institute of Medicine and Commission on Cancer recommends delivery of survivorship care plans on completion of curative treatment. While models exist for high-quality survivorship care, institutions encounter barriers such as lack of resources and limited training in survivorship. Our institution piloted a unique model combining fellows’ education with guideline-driven recommendations from a multidisciplinary team to provide consolidated survivorship care. Methods: A survey for self-reported competence and experience was conducted amongst the hematology and oncology fellows at the MedStar Washington Hospital Center. A bimonthly clinic staffed by a medical oncologist, oncology fellow and a cancer rehabilitation fellow was initiated in September 2018. Didactic lectures, curriculum syllabus and recommended assessments were established. Screening tools for distress, patients’ confidence in knowledge about survivorship and physical function via PROMIS 20a were administered; clinical assessments including the “6-minute walk test” were used to assess cardiovascular health. Results: Most fellows had not encountered a survivor of lung (16%), GU (0%) and head and neck cancer (33%). Majority of the fellows had never delivered a survivorship care plan. Scores were low in competence and experience in survivorship. By December 2018, 15 patients with 17 diagnoses of cancer were referred to the clinic. 10 were survivors of hematologic malignancies while 7 were of solid tumors. The no-show rate was 40%. Fellows conducted the assessments and were supervised by an oncology attending. Of the 9 patients seen, 4 were referred for physical therapy; additional referrals for psychology and cardiology were frequent. Conclusions: A comprehensive multidisciplinary survivorship clinic focusing on fellows’ education is a feasible model for delivery of survivorship care and aims to bridge the gap in experience and competence of fellows. Future goals include re-assessment of patient-reported outcomes, physical function, and competence of fellows.


2009 ◽  
Vol 5 (3) ◽  
pp. 110-112 ◽  
Author(s):  
Marc E. Horowitz ◽  
Michael Fordis ◽  
Susan Krause ◽  
Julie McKellar ◽  
David G. Poplack

Approximately 12,000 children in the United States are diagnosed with cancer each year, and roughly 75% of these patients become long-term survivors. The Passport for Care was developed to support these survivors and their health care providers.


2008 ◽  
Vol 26 (5) ◽  
pp. 759-767 ◽  
Author(s):  
Patricia A. Ganz ◽  
Erin E. Hahn

Breast cancer survivors account for 23% of the more than 10 million cancer survivors in the United States today. The treatments for breast cancer are complex and extend over a long period of time. The post-treatment period is characterized by gradual recovery from many adverse effects from treatment; however, many symptoms and problems persist as late effects (eg, infertility, menopausal symptoms, fatigue), and there may be less frequent long-term effects (eg, second cancers, lymphedema, osteoporosis). There is increasing recognition of the need to summarize the patient's course of treatment into a formal document, called the cancer treatment summary, that also includes recommendations for subsequent cancer surveillance, management of late effects, and strategies for health promotion. This article provides guidance on how oncologists can implement a cancer treatment summary and survivorship care plan for breast cancer survivors, with examples and linkage to useful resources. Providing the breast cancer treatment summary and survivorship care plan is being recognized as a key component of coordination of care that will foster the delivery of high-quality cancer care.


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