Intro Treatment summaries prepared as part of surivivorship care planning should correctly and thoroughly report diagnosis and treatment information. Methods As part of a clinical trial, summaries were prepared for Stage 0–3 breast cancer patients at two cancer centers. Summaries were prepared per the standard-of-care at each center via two methods: using the electronic health record (EHR) to create and facilitate auto-population of content or using manual data entry into an external software program to create the summary. Each participant’s clinical data was abstracted and cross-checked against each sumary. Errors were defined as inaccurate information, while omissions were defined as missing information based on the Institute of Medicine (IOM) recommended elements. Results 121 summaries were reviewed: 80 EHR-based versus 41 software-based. Twenty-four (30%) EHR- versus 6 (15%) software-based summaries contained ≥1 omission. Omissions included failure to provide dates and specify all axillary surgeries for EHR-based summaries and failure to specify receptors for software-based summaries. Eight (10%) EHR- versus 19 (46%) software-based summaries contained ≥1 error. Errors in EHR-based summaries were mostly discrepancies in dates, while errors in software-based summaries included incorrect stage, surgeries, chemotherapy and receptors. Conclusion A significant proportion of summaries contained at least 1 error or omission; some were potential clinically significant. Mismatches between the clinical scenario and templates contributed to many of the errors and omissions. In an era of required care plan provision, quality measures should be considered and tracked to reduce rates, decrease inadvertent contributions from templates, and support audited data use.
Purpose: Efforts to inform survivors about long-term risks and planned follow-up after cancer treatment have increased. Survivorship Care Plans (SCPs) and care planning sessions have been recommended since 2005, yet the benefits of both SCP provision and care planning are only now being assessed. The impact of SCPs separate from care planning sessions is unclear, however SCPs alone require less time and cost to provide than SCPs combined with care planning sessions. We hypothesized that SCPs alone might enhance patient knowledge. In a randomized trial, we assessed change in patient knowledge of diagnosis, treatment, late/chronic side effects and followup care pre and post receipt of SCP. Methods: Patients who completed primary treatment within the past 2 years for Stage 0-3 breast cancer were consented, enrolled, and randomized to immediate (intervention) versus delayed receipt (control) of an individualized SCP without care planning. All participants completed the Wisconsin Survey of DiagnOsis and Management in Breast cancer (WiSDOM-B), a test of knowledge about one’s own breast cancer diagnosis, treatment and late effects scored out of 40 points. The survey was completed at both baseline and at four weeks (prior to delayed receipt); the primary outcome was change in score. The study was designed with 90% power to detect a between-group difference of 4 points (out of 40 possible). Results: Between November 2013 and March 2014, we recruited 64 women aged 36-78 with Stage 0-3 breast cancer. Most participants were Stage 1-2 (n=50, 79%) with n=7 (10.9%) in Stage 3. Most had received chemotherapy (62.5%), endocrine therapy (89.1%), or radiation (76.6%). At baseline, the average WiSDOM-B score was 28.3 out of 40 (70.8%), range 15.5-38.5. There was no evidence of change in score from baseline to four weeks for either the immediate SCP group (+0.41, 95% CI [-0.97,+1.79]) or delayed receipt control group (+0.95, 95% CI [-0.48,2.38]). Observed variation was consistent with sample size assumptions, and the observed treatment difference (-0.55, 95% CI [-2.53,1.44], p=n.s.) ruled out the prespecified clinically significant effect size of +4.0 (+10%). Overall, participants scored better on questions testing knowledge of diagnosis (side, year of diagnosis, lymph node test results, receptor status, and stage) and surgical side effects than on questions testing knowledge of other treatment (chemotherapy, radiation or endocrine therapy) side effects. Participant satisfaction with knowledge and care team communication was collected pre and post SCP, as well as feedback on SCP content and use of the SCP. These and analyses of selected questions shown to change post SCP by Nissen et al will also be presented. Conclusion: In a controlled, randomized clinical trial, receipt of a SCP without care planning sessions did not appear to significantly increase survivor knowledge about cancer diagnosis, treatment and followup as assessed by the WiSDOM-B survey. Efforts to improve survivor knowledge should investigate the impact of care planning sessions or other interactive health information tools. A second study of patients (n=64) randomized to immediate or delayed receipt of SCPs, in conjunction with care planning sessions, is currently enrolling. Citation Format: Amye J Tevaarwerk, Kevin A Buhr, Kari B Wisinski, Mark Burkard, Mindy Gribble, Willam Hocking, Wenjun Sun, SarahMaria Donohue, Jamie Zeal, Abigail Terhaar, Douglas A Wiegman, Mary E Sesto. Randomized clinical trial assessing the impact of survivorship care plans on survivor knowledge [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-09-15.
83 Background: Survivorship care plans (SCP) are recommended to improve communication between breast cancer survivors (BCS), primary care, and oncology. Objective evaluation of survivor access of specific care plan content is challenging as commonly-used formats (e.g., paper or electronic file) prevent tracking of usage. This project aimed to evaluate the usage and usefulness of an electronic survivorship care plan (eSCP) that could track access and pages visited. Methods: We recruited 128 BCS from outpatient oncology clinics. 121 BCS received eSCP access via an online secure patient portal; seven received paper copies and are not included in this analysis. The research team customized the portal to track eSCP usage and page visits during the study period (at least 12 weeks of eSCP access). The eSCP consisted of four internal pages (Guide, Treatment Summary, Followup Plan, and Glossary) plus 21 external hyperlinks to survivorship resources. eSCP usefulness and understandability were evaluated using 10-item Likert scales: 1 (not at all useful/very hard to understand to 10 very useful/very easy to understand). Results: 90 out of 121 (74.38%) participants accessed the eSCP. The majority accessed the eSCP within two days of receiving access (N = 70/90, 77.8%) and visited 1 to 3 times (N = 81/90, 90%). Treatment Summary was the most frequently visited internal page (158 visits by 69 participants). Other page usage: Followup Plan (124 visits by 65 participants), Guide (113 visits by 62 participants), and Glossary (46 visits by 31 participants). 34 participants (37.78%) accessed external pages from the eSCP. Participants perceived the overall care plan as useful (8.78, 95% CI [8.38, 9.19]) and easy to understand (8.81, 95% CI [8.47, 9.16]). Conclusions: We found high usage rates among BCS provided an eSCP and the majority perceived the eSCP as useful and easy to understand. Based on favorable assessment and use, it is reasonable for eSCPs to serve as a tool to facilitate communication and care coordination for survivors, especially as access to and use of mobile device technology and electronic patient health portals increase. Minority and rural survivors access and use of such features may require further research.
The International Staging Evaluation and Response Criteria Harmonization for Childhood, Adolescent, and Young Adult Hodgkin Lymphoma (SEARCH for CAYAHL) seeks to provide an appropriate, universal differentiation between E-lesions and stage IV extranodal disease in Hodgkin lymphoma (HL). A literature search was performed through the PubMed database using the terms "Hodgkin disease," and "extranodal," "extralymphatic," "E lesions," "E stage," or "E disease." Publications were reviewed for the number of participants, median age and age range, diagnostic modalities used for staging, and the definition, incidence, and prognostic significance of E-lesions. Thirty-five articles describing 11,928 patients met the inclusion criteria. Most studies reported staging according to the Ann Arbor (74%) or Cotswolds modification of the Ann Arbor staging criteria (23%), and articles rarely defined E-lesions or disambiguated "extranodal disease." The overall incidence of E-lesions for patients with stage I-III HL was 12.6%. Available stage-specific incidence analysis of 3,175 patients showed the highest incidence of E-lesions in stage II (28%), followed by stage III (22%), with E-lesions rarely seen with stage I disease (1.3%). E-lesions likely remain predictive, but we cannot unequivocally conclude that identifying E-lesions in HL imparts prognostic value in the modern era of the more selective use of targeted radiation therapy. A harmonized definition was reached based on the available evidence and the consensus of the SEARCH working group. We recommend that this definition of E-lesion be applied in future clinical trials with explicit reporting to confirm the prognostic value of E-lesions.
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