Adjuvant platinum versus capecitabine for residual, invasive, triple-negative breast cancer: Patient-reported outcomes in ECOG-ACRIN EA1131.

BACKGROUND: Patient-reported outcomes (PROs) are a better tool for evaluating the experiences of patients who have symptomatic, treatment-associated adverse events (AEs) compared with clinician-rated AEs. The authors present PROs assessing health-related quality of life (HRQoL) and treatment-related neurotoxicity for adjuvant capecitabine versus platinum on the Eastern Cooperative Oncology Group-American College of Radiology Imaging Network (ECOG-ACRIN) EA1131 trial (ClinicalTrials.gov identifier NCT02445391). METHODS: Participants completed the National Comprehensive Cancer Network Functional Assessment of Cancer Therapy-Breast Cancer Symptom Index (NFBSI-16) and the Functional Assessment of Cancer Therapy-Gynecologic Oncology Group neurotoxicity subscale (platinum arm only) at baseline, cycle 3 day 1 (C3D1), 6 months, and 15 months. Because of early termination, power was insufficient to test the hypothesis that HRQoL, as assessed by the NFBSI-16 treatment side-effect (TSE) subscale, would be better at 6 and 15 months in the capecitabine arm; all analyses were exploratory. Means were compared by using t-tests or the Wilcoxon rank-sum test, and proportions were compared by using the χ2 test. RESULTS: Two hundred ninety-six of 330 eligible patients provided PROs. The mean NFBSI-16 TSE subscale score was lower for the platinum arm at baseline (p = .02; absolute difference, 0.6 points) and for the capecitabine arm at C3D1 (p = .04; absolute difference, 0.5 points), but it did not differ at other times. The mean change in TSE subscale scores differed between the arms from baseline to C3D1 (platinum arm, 0.15; capecitabine arm, -0.72; p = .03), but not from baseline to later time points. The mean decline in Functional Assessment of Cancer Therapy-Gynecologic Oncology Group neurotoxicity subscale scores exceeded the minimal meaningful change (1.38 points) from baseline to each subsequent time point (all p < .05). CONCLUSIONS: Despite the similar frequency of clinician-rated AEs, PROs identified greater on-treatment symptom burden with capecitabine and complemented clinician-rated AEs by characterizing patients' experiences during chemotherapy.

Transforming the oncology data paradigm by creating, capturing, and retrieving structured cancer data at the point of care: A Mayo Clinic pilot.

INTRODUCTION: Structured data capture requires defined languages such as minimal Common Oncology Data Elements (mCODE). This pilot assessed the feasibility of capturing 5 mCODE categories (stage, disease status, performance status (PS), intent of therapy and intent to change therapy). METHODS: A tool (SmartPhrase) using existing and custom structured data elements was Built to capture 4 data categories (disease status, PS, intent of therapy and intent to change therapy) typically documented as free-text within notes. Existing functionality for stage was supported by the Build. Participant survey data, presence of data (per encounter), and time in chart were collected prior to go-live and repeat timepoints. The anticipated outcome was capture of >50% sustained over time without undue burden. RESULTS: Pre-intervention (5-weeks before go-live), participants had 1390 encounters (1207 patients). The median percent capture across all participants was 32% for stage; no structured data was available for other categories pre-intervention. During a 6-month pilot with 14 participants across three sites, 4995 encounters (3071 patients) occurred. The median percent capture across all participants and all post-intervention months increased to 64% for stage and 81%-82% for the other data categories post-intervention. No increase in participant time in chart was noted. Participants reported that data were meaningful to capture. CONCLUSIONS: Structured data can be captured (1) in real-time, (2) sustained over time without (3) undue provider burden using note-based tools. Our system is expanding the pilot, with integration of these data into clinical decision support, practice dashboards and potential for clinical trial matching.

NCCN Guidelines® Insights: Survivorship, Version 1.2023.

The NCCN Guidelines for Survivorship are intended to help healthcare professionals address the complex and varied needs of cancer survivors. The NCCN Guidelines provide screening, evaluation, and treatment recommendations for psychosocial and physical problems resulting from adult-onset cancer and its treatment; recommendations to help promote healthy behaviors and immunizations in survivors; and a framework for care coordination. These NCCN Guidelines Insights summarize recent guideline updates and panel discussions pertaining to sleep disorders, fatigue, and cognitive function in cancer survivors.

An evaluation of the effect of lithium on taxane-induced neuropathy.

PURPOSE: No medications are known to protect against chemotherapy-induced peripheral neuropathy (CIPN). Pre-clinical models suggest that lithium may lessen taxane-induced neuropathy. Our aim was to use clinical data to assess whether concurrent lithium usage decreased the frequency or severity of CIPN in patients receiving taxane chemotherapy. METHODS: A retrospective analysis was performed using the electronic health record at Mayo Clinic to identify all patients prescribed concurrent lithium and paclitaxel. Four controls were matched to each case based on clinical variables. Neuropathy severity was graded from available patient and clinician reports. Rates of any neuropathy, dose reduction for CIPN, and treatment discontinuation for CIPN were compared. Conditional regression analysis was performed with propensity score matching. RESULTS: Six patients, receiving concurrent lithium and paclitaxel, were included in the analysis, and compared to 24 control cases. A similar number of paclitaxel cycles were administered to both groups. Any neuropathy was experienced by 33% (2/6) of patients receiving lithium and 38% (9/24) patients who did not receive lithium (p = 1.000). There was no difference in neuropathy severity (p = 0.8565), rate of chemotherapy dose reduction (17% vs. 17%, p = 1.000), or treatment discontinuation (17% vs 4%, p = 0.3655) for CIPN. In the propensity score analysis, the odds ratio for developing any neuropathy was 0.63 (95% confidence interval, 0.06 to 6.96, p = 0.7079). CONCLUSIONS: Lithium does not appear to significantly lessen the risk of neuropathy for patients receiving paclitaxel. IMPLICATIONS FOR CANCER SURVIVORS: Targeted approaches for preventing CIPN are desperately needed. Despite sound scientific rationale, the current study did not identify neuroprotective properties of lithium.

Fatigue and endocrine symptoms among women with early breast cancer randomized to endocrine versus chemoendocrine therapy: Results from the TAILORx patient-reported outcomes substudy.

BACKGROUND: TAILORx (Trial Assigning Individualized Options for Treatment) prospectively assessed fatigue and endocrine symptoms among women with early-stage hormone receptor-positive breast cancer and a midrange risk of recurrence who were randomized to endocrine therapy (E) or chemotherapy followed by endocrine therapy (CT+E). METHODS: Participants completed the Functional Assessment of Chronic Illness Therapy-Fatigue, the Patient-Reported Outcomes Measurement Information System-Fatigue Short Form, and the Functional Assessment of Cancer Therapy-Endocrine Symptoms at the baseline and at 3, 6, 12, 24, and 36 months. Linear regression was used to model outcomes on baseline symptoms, treatment, and other factors. RESULTS: Participants (n = 458) in both treatment arms reported greater fatigue and endocrine symptoms at early follow-up in comparison with the baseline. The magnitude of change in fatigue was significantly greater for the CT+E arm than the E arm at 3 and 6 months but not at 12, 24, or 36 months. The CT+E arm reported significantly greater changes in endocrine symptoms from the baseline to 3 months in comparison with the E arm; change scores were not significantly different at later time points. Endocrine symptom trajectories by treatment differed by menopausal status, with the effect larger and increasing for postmenopausal patients. CONCLUSIONS: Adjuvant CT+E was associated with greater increases in fatigue and endocrine symptoms at early time points in comparison with E. These differences lessened over time, and this demonstrated early chemotherapy effects more than long-term ones. Treatment arm differences in endocrine symptoms were more evident in postmenopausal patients. LAY SUMMARY: Participants in TAILORx (Trial Assigning Individualized Options for Treatment) with early-stage hormone receptor-positive breast cancer and an intermediate risk of recurrence were randomly assigned to endocrine or chemoendocrine therapy. Four hundred fifty-eight women reported fatigue and endocrine symptoms at the baseline and at 3, 6, 12, 24, and 36 months. Both groups reported greater symptoms at early follow-up versus the baseline. Increases in fatigue were greater for the chemoendocrine group than the endocrine group at 3 and 6 months but not later. The chemoendocrine group reported greater changes in endocrine symptoms in comparison with the endocrine group at 3 months but not later.

Adoption of Patient-Generated Health Data in Oncology: A Report From the NCCN EHR Oncology Advisory Group.

BACKGROUND: Collecting, monitoring, and responding to patient-generated health data (PGHD) are associated with improved quality of life and patient satisfaction, and possibly with improved patient survival in oncology. However, the current state of adoption, types of PGHD collected, and degree of integration into electronic health records (EHRs) is unknown. METHODS: The NCCN EHR Oncology Advisory Group formed a Patient-Reported Outcomes (PRO) Workgroup to perform an assessment and provide recommendations for cancer centers, researchers, and EHR vendors to advance the collection and use of PGHD in oncology. The issues were evaluated via a survey of NCCN Member Institutions. Questions were designed to assess the current state of PGHD collection, including how, what, and where PGHD are collected. Additionally, detailed questions about governance and data integration into EHRs were asked. RESULTS: Of 28 Member Institutions surveyed, 23 responded. The collection and use of PGHD is widespread among NCCN Members Institutions (96%). Most centers (90%) embed at least some PGHD into the EHR, although challenges remain, as evidenced by 88% of respondents reporting the use of instruments not integrated. Forty-seven percent of respondents are leveraging PGHD for process automation and adherence to best evidence. Content type and integration touchpoints vary among the members, as well as governance maturity. CONCLUSIONS: The reported variability regarding PGHD suggests that it may not yet have reached its full potential for oncology care delivery. As the adoption of PGHD in oncology continues to expand, opportunities exist to enhance their utility. Among the recommendations for cancer centers is establishment of a governance process that includes patients. Researchers should consider determining which PGHD instruments confer the highest value. It is recommended that EHR vendors collaborate with cancer centers to develop solutions for the collection, interpretation, visualization, and use of PGHD.

NCCN Guidelines® Insights: Survivorship, Version 1.2022.

The NCCN Guidelines for Survivorship are intended to help healthcare professionals who work with survivors to ensure that the survivors' complex and varied needs are addressed. The NCCN Guidelines provide screening, evaluation, and treatment recommendations for the consequences of adult-onset cancer and its treatment; recommendations to help promote physical activity, weight management, and immunizations in survivors; and a framework for care coordination. This article summarizes updates to the NCCN Guidelines pertaining to preventive health for cancer survivors, including recommendations about alcohol consumption and vaccinations.

Unmet needs and problems related to employment and working as reported by survivors with metastatic breast cancer.

PURPOSE: By 2020, the US population living with metastatic breast cancer (MBC) has exceeded 165,000. A knowledge gap exists regarding the factors affecting work ability for these individuals. We sought to characterize the work status, importance of work, and work-related information needs for women living with MBC. METHODS: We conducted an online survey using an MBC listserv and clinic flyers in 2014-2015. Respondents working at the time of MBC diagnosis were divided into "stably-working" and "no-longer-working" based on employment status at the time of survey. Comparisons were made with chi-square or two-tailed t test. RESULTS: Respondents (n = 133) were predominantly non-Hispanic White (93.2%); 72 were stably-working, while 61 reported no-longer-working. Those no-longer-working were older (54.0 vs 49.5 years old, p < 0.01, Cohen's d = 0.55), further from initial diagnosis of MBC (4.6 vs 3.3 years, p < 0.01, Cohen's d = 0.36), and reported high rates of life interference due to MBC (n = 51, 83.6% vs n = 39, 54.2%, p < 0.01, Cramer's V = 0.32). Stably-working respondents considered work to be important (n = 58, 80.5% vs n = 18, 29.5%, p < 0.01, Cramer's V = 0.57); the top reasons cited were financial and/or insurance (80.4%), importance of staying busy (67.9%), and desire to support themselves and family (64.3%). The stably-working respondents more often valued information on how to talk with employers or co-workers about diagnosis (n = 38, 57.6% vs n = 16, 27.1%; p < 0.01), legal rights in workplace (n = 43, 65.2% vs n = 22, 36.7%; p < 0.01), when to think about stopping work (n = 45, 68.2% vs n = 18, 30%; p < 0.01), and applying for disability (n = 42, 63.6% vs n = 26, 42.6%; p < 0.05), when compared to no-longer-working. CONCLUSION: The decision to stop working may represent a subsequent event driven by cancer progression. This research highlights the ongoing need of information targeting MBC to facilitate the management of employment and financial issues early in the MBC trajectory.

Barriers and facilitators to the use of survivorship care plans by hematopoietic stem cell transplant survivors and clinicians.

PURPOSE: Survivors of hematopoietic stem cell transplants (HSCT) have complex care needs for the remainder of their lives, known as the survivorship period. Survivorship care plans (SCPs) have been proposed to improve care coordination and ultimately survivorship outcomes. We explored the barriers and facilitators of SCP use among HSCT survivors and their clinicians in order to develop more useful SCPs for the HSCT context. METHODS: Analogous surveys regarding perceived barriers to and facilitators of SCP use based on a sample SCP for a female allogenic HSCT survivor were administered to HSCT survivors and non-transplant oncology and primary care clinicians. RESULTS: Twenty-seven HSCT survivors and 18 clinicians completed the survey. The main barriers to SCP use were lack of awareness of SCP existence, uncertainty regarding where to find SCP, unclear roles and responsibilities among healthcare teams, length of SCP, and difficultly understanding SCPs. The facilitators of SCP use were increased understanding of survivorship care needs, clarified roles and responsibilities of survivors and clinicians, SCPs that are readily available and searchable in electronic health record, increased awareness of SCP existence and provision to all survivors, and if the SCP is survivor-specific and up-to-date. CONCLUSIONS: Much of the work regarding SCPs has looked at barriers to creation and provision; however, our study examines factors influencing use of SCPs. By determining the barriers and facilitators surrounding SCP use for HSCT survivors and their clinicians, we can create SCP templates and clinical workflows to optimize SCP use, ideally leading to better outcomes for HSCT survivors.

Results of Engineering, Primary Care, Oncology Collaborative Regarding a Survey of Primary Care on a Re-Engineered Survivorship Care Plan.

Survivorship care plans (SCPs) may facilitate cancer survivorship care shared between oncologists and primary care, particularly for patients more likely to receive care across healthcare systems such as rural patients. However, limited research has addressed primary care clinicians' information or workflow needs with regard to SCPs. This study's objective was to assess primary care clinicians' perceived usefulness with a re-engineered SCP previously developed by applying engineering approaches and informed by primary care preferences. An emailed survey of primary care clinicians assessed perceived usefulness with the re-engineered SCP. Clinicians were recruited across the USA from primary care practice-based research networks (PBRNs) with high concentrations of rural practices. Over 90% of respondents (n = 111) agreed that (1) the re-engineered SCP was useful (n = 95) and (2) they would want to receive a similar SCP (n = 93). The majority demonstrated high agreement regarding the SCP's relevance, understandability, content, and ability to help provide better survivorship care. Perceived usefulness was consistent between rural and non-rural clinicians. Suggested improvements involved decreased length, addition of a bulleted list, and electronic health record integration. Results indicate that the majority of primary care clinicians perceive the re-engineered SCP as useful. However, primary care clinicians indicated continued barriers despite end-user specific alterations. Future research should investigate additional strategies to support primary care survivorship-related workload, provide essential SCP content, and improve survivorship care delivery.

Re-engineering Survivorship Care Plans to Support Primary Care Needs and Workflow: Results From an Engineering, Primary Care and Oncology Collaborative for Survivorship Health (EPOCH).

Maintaining the health of survivors requires communication, collaboration and care coordination between oncology and primary care. Primary care clinicians have been acknowledged as important recipients of survivorship care plans (SCPs); however, current SCP templates have not been evaluated for usefulness in the primary care context. We surveyed and interviewed primary care clinicians from a rural research network regarding SCP content, format and layout (phase 1), and potential use and clinical workflows around SCPs (phase 2). Based on these data, an existing SCP template was iteratively redesigned to better support survivorship care in the primary care setting. A total of 13 clinicians (9 MDs, 4 APPs) participated. Interviewees advocated for maintaining a single SCP document shared by survivors and clinicians. Changes to the SCP template included prioritizing follow-up over summary of treatment and removing or down-playing screening recommendations not impacted by cancer or cancer treatment. The re-engineered SCP was regarded as highly relevant for survivors, but clinicians noted the significant effort to "disassemble" SCPs in order to enter the information into on the receiving health record. Primary care clinicians value the information in SCPs but had important recommendations regarding content, layout, and format. Additionally, a significant effort appears to be required by recipients in order to extract SCP information for future use.

Reported Concerns and Acceptance of Information or Referrals Among Breast Cancer Survivors Seen for Care Planning Visits: Results from the University of Wisconsin Carbone Cancer Center Survivorship Program.

Breast cancer survivors' experience physical and psychosocial concerns following active curative-intent treatment. Survivors' complex needs are often reviewed at survivorship care planning visits (SCP visits). However, little is known about the post-treatment concerns and resource needs addressed within the context of SCP visits. Using discretely collected electronic health record data, we examined characteristics, concerns, and acceptance of education materials and/or referrals among stages 0-3 breast cancer survivors seen for SCP visits. Most survivors reported concerns related to activity (n = 739; 72.7%) and nutrition (n = 677; 66.6%). Survivors of color were more likely to report concerns related to pain/swelling (odds ratio (OR), 4.4; 95% CI, 1.7-11.4) and employment/insurance (2.8; 1.4-5.7) compared to Whites. More than half accepted materials or referrals for concerns related to nutrition, activity/pain, substance use, sexual health, mood, and sleep (padj-value < 0.05). However, not all reported concerns led to acceptance of materials or referrals. Survivors seen for SCP visits report a wide range of concerns at the end of active curative-intent treatment but may not necessarily accept materials or referrals for their concerns within the context of these visits. Our findings highlight the importance of exercise, physical rehabilitation, and nutrition interventions for survivors following active curative-intent treatment. Further study is needed to elucidate the reasons for acceptance vs. non-acceptance of resources addressing reported concerns.

Usage of a Web-Based Workplace and Symptom Self-Management Intervention Tool to Improve Work Ability for Breast Cancer Survivors.

This work aimed to evaluate the usage of a web-based intervention (WISE: Work ability Improvement through Symptom and Ergonomic strategies) developed to improve work ability for women recently diagnosed with breast cancer. Twenty-two women undergoing adjuvant treatment for breast cancer were provided access to WISE. This website includes content pages (e.g., information on ergonomics, symptom management, and other work-related resources) and worksheets (e.g., journals to track symptoms or goals). It could be personalized based on individual work activities and symptoms. Measures assessed at 3 months included usage of the website and perceived usefulness. Thirteen of the 22 participants (60%) accessed WISE; 11 personalized their information. Content and worksheet pages had 97 and 79 visits, respectively. Most frequently visited pages were "setting goals" (i.e., prioritize and track symptoms; 45 visits) and "steps to creating your WISE plan" (i.e., incorporate symptom and ergonomic strategies; 16 visits). Median duration time was 11.05 (range 0.35-79.55) minutes. Usefulness of the content and worksheet pages assessed via a 7-point Likert scale (1 = strongly disagree, 7 = strongly agree) was 5.08 (SD = 1.59) and 4.26 (SD = 2.03), respectively. Participants were likely to recommend WISE to other women undergoing cancer treatment (mean = 6.11; SD = 1.05). The majority of participants personalized WISE work and symptom strategies. Overall, participants agreed that WISE content pages were useful and would recommend WISE for other breast cancer survivors. Results support that majority of breast cancer survivors, undergoing treatment with curative intent, accessed a web-based intervention that provided personalized information on workplace and symptom strategies.

Results from a prospective longitudinal survey of employment and work outcomes in newly diagnosed cancer patients during and after curative-intent chemotherapy: A Wisconsin Oncology Network study.

BACKGROUND: Postcancer work limitations may affect a substantial proportion of patients and contribute to the "financial toxicity" of cancer treatment. The degree and nature of work limitations and employment outcomes are poorly understood for cancer patients, particularly in the immediate period of transition after active treatment. We prospectively examined employment, work ability, and work limitations during and after treatment. METHODS: A total of 120 patients receiving curative therapy who were employed prior to their cancer diagnosis and who intended to work during or after end of treatment (EOT) completed surveys at baseline (pretreatment), EOT, and 3, 6, and 12 months after EOT. Surveys included measures of employment, work ability, and work limitations. Descriptive statistics (frequencies, percentages, means with standard deviations) were calculated. RESULTS: A total of 111 participants completed the baseline survey. On average, participants were 48 years of age and were mostly white (95%) and female (82%) with a diagnosis of breast cancer (69%). Full-time employment decreased during therapy (from 88% to 50%) and returned to near prediagnosis levels by 12-month follow-up (78%). Work-related productivity loss due to health was high during treatment. CONCLUSIONS: This study is the first to report the effects of curative intent cancer therapy on employment, work ability, and work limitations both during and after treatment. Perceived work ability was generally high overall 12 months after EOT, although a minority reported persistent difficulty. A prospective analysis of factors (eg, job type, education, symptoms) most associated with work limitations is underway to assist in identifying at-risk patients.

Survivorship, Version 1.2021.

The NCCN Guidelines for Survivorship are intended to help healthcare professionals working with cancer survivors to ensure that each survivor's complex and varied needs are addressed. The Guidelines provide screening, evaluation, and treatment recommendations for consequences of adult-onset cancer and its treatment; recommendations to help promote healthful lifestyle behaviors, weight management, and immunizations in survivors; and a framework for care coordination. This article summarizes the recommendations regarding employment and return to work for cancer survivors that were added in the 2021 version of the NCCN Guidelines.

NCCN Guidelines Insights: Survivorship, Version 2.2020.

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for consequences of adult-onset cancer and its treatment, with the goal of helping healthcare professionals who work with survivors, including those in primary care. The guidelines also provide recommendations to help clinicians promote physical activity, weight management, and proper immunizations in survivors and facilitate care coordination to ensure that all of the survivors' needs are addressed. These NCCN Guidelines Insights summarize additions and changes made to the guidelines in 2020 regarding cardiovascular disease risk assessment and screening for subsequent primary malignancies.

Effect of a technology-supported physical activity intervention on health-related quality of life, sleep, and processes of behavior change in cancer survivors: A randomized controlled trial.

OBJECTIVES: This pilot trial tested the effect of adding a multi-level, technology-based physical activity intervention module to a standard survivorship care plan for breast and colorectal cancer survivors. The objective of this analysis was to determine whether the physical activity module improved health-related quality of life, sleep, and factors key to lasting behavior change (eg, social support, self-efficacy). METHODS: Breast and colorectal cancer survivors (n = 50) were enrolled alongside a support partner. Survivors were assigned to receive a standard survivorship care plan either alone or augmented by a 12-week multi-component physical activity module. The module included a Fitbit tracker (with the physical activity data integrated into the electronic health record for clinician review) and customized email feedback. Physical activity was measured using the ActiGraph GT3X+. Psychosocial outcomes included the SF-36, FACT, ISEL, PROMIS sleep measures, and physical activity beliefs. Data were analyzed using linear mixed modeling. RESULTS: Cancer survivors were aged 54.4 ± 11.2 years and were 2.0 ± 1.5 years from diagnosis. Relative to comparison, the intervention was associated with moderate-to-large improvements in physical health (effect size: d = 0.39, 95% CI = 0.0, 0.78), mental health (d = 0.59, 95% CI = 0.19, 0.99), sleep impairment (d = 0.62, 95% CI = -1.02, -0.22), and exercise self-efficacy (d = 0.60, 95% CI = 0.20, 1.0). CONCLUSIONS: The intervention delivered meaningful improvements in survivors' quality of life, social support, and sleep impairment. If replicated in a larger sample, adding a technology-supported physical activity module to survivorship care plans may be a practical strategy for supporting healthy survivorship. TRIAL REGISTRATION: ClinicalTrials.gov#: NCT02677389.

Impact of Survivorship Care Plans and Planning on Breast, Colon, and Prostate Cancer Survivors in a Community Oncology Practice.

With a growing number of cancer survivors, survivorship care plans (SCPs) are recommended to communicate information about late effects of treatment and follow-up care. Community oncology practices follow 85% of adult cancer survivors but report more difficulty in providing SCPs compared to academic centers. Our objective was to evaluate the impact of delivering SCPs in a community oncology practice by examining awareness of SCP receipt as well as how provision affects survivors' perception of care quality and of their condition. Survivors who accepted a SCP as standard of care were recruited from a community oncology practice in the Midwest and completed surveys prior to SCP provision (baseline) and 4 weeks later (follow-up). Within-survivor changes in knowledge of SCP receipt, satisfaction and perceived care coordination were assessed. Thirty cancer survivors (breast, colon, and prostate) completed the baseline survey, while 24 completed the follow-up survey (80% response rate). Participants reported receiving SCPs and treatment summaries more frequently at follow-up after receiving a SCP. At follow-up, there was a significant increase in survivor activation and involvement in care along with satisfaction of knowledge of care. Communication about and during SCP provision may need to be clearer: 34% of survivors could not correctly identify SCP receipt in this study. This may place these survivors at a disadvantage, if this leads to less awareness of important information regarding follow-up surveillance and management. Of those aware of SCP receipt, SCP provision had positive impacts in this small, short-term study.

Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT survivors and nontransplantation clinicians (oncologists and primary care physicians) were invited to participate in a survey evaluating the usefulness and utility of a sample HSCT-specific SCP with a treatment summary generated by autopopulation from an electronic health record (EHR). All participating HSCT survivors (n = 29) and clinicians (n = 18) indicated a desire to receive an SCP. More than 85% of the participants perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, and graft-versus-host disease and other late/chronic side effects to be useful. The majority of survivors also believed that care team contact information was useful. In addition, >85% of survivors and clinicians agreed that the SCP increased their understanding of treatments and chronic/late side effects, improved health care provided, and were satisfied with the SCP and found it understandable and easy to use. The majority of survivors indicated that additional information should be added to the SCP, whereas some clinicians deemed the SCP too long. Survivors preferred to receive the SCP as a paper document at the end of a regular follow-up visit and review it with a cancer clinician, whereas clinicians preferred to receive the SCP through the EHR. These findings will help improve the design of future SCPs for use by HSCT survivors and clinicians. Future work will include leveraging the EHR to ease the burden of creating user-centered documents.

A randomized trial of immediate versus delayed survivorship care plan receipt on patient satisfaction and knowledge of diagnosis and treatment.

BACKGROUND: Survivorship care plans (SCPs) and care-planning sessions have been recommended for over a decade, yet evidence for their benefit remains mixed. In a randomized trial, changes in survivor knowledge and satisfaction before and after the receipt of an SCP were assessed. METHODS: Patients with breast cancer who had completed curative-intent treatment were randomized to immediate versus delayed receipt of an individualized SCP. All participants completed the modified Wisconsin Survey of Cancer Diagnosis and Management in Breast Cancer and the Preparing for Life As a New Survivor survey to assess individual knowledge about cancer diagnosis, treatment, side effects, and follow-up as well as satisfaction with communication and care coordination. Surveys were completed at baseline, at 4 weeks (before delayed receipt), and again at 12 weeks (after all participants had received SCPs); the primary outcome was change in knowledge at 4 weeks. RESULTS: In total, 127 eligible women were randomized. An improvement in individual knowledge was observed between baseline and week 12 for both arms combined (+1.6; 95% confidence interval, 0.9-2.3; P < .001). There was no statistically significant difference in the change in knowledge from baseline through week 4 between the arms. No significant change occurred for satisfaction scores over time. CONCLUSIONS: This randomized trial of immediate versus delayed SCP receipt demonstrated a small improvement (4%) in survivor knowledge. However, this improvement did not appear to be related to SCP provision. The authors hypothesized that the improvement was because of repeated administration of the knowledge survey. If improved survivor knowledge is a goal, then strategies beyond the 1-time provision and review of an SCP should be explored.