The impact of the survivorship care plan on health care use: 2-year follow-up results of the ROGY care trial

2017 ◽  
Vol 12 (1) ◽  
pp. 18-27 ◽  
Author(s):  
Mette Moustgaard Jeppesen ◽  
Nicole P. M. Ezendam ◽  
Johanna M. A. Pijnenborg ◽  
M. Caroline Vos ◽  
Dorry Boll ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Use ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
The Impact

The impact of an automatically generated survivorship care plan on patient reported outcomes (ROGY Care): Results of a pragmatic cluster randomized controlled trial among endometrial cancer patients.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e16517-e16517
Author(s):  
Lonneke V. van de Poll-Franse ◽  
Kim A.H. Nicolaije ◽  
Nicole P.M. Ezendam ◽  
M. Caroline Vos ◽  
Dorry Boll ◽  
...  
Keyword(s):  
Health Care ◽  
Endometrial Cancer ◽  
Usual Care ◽  
Cancer Patients ◽  
Health Care Use ◽  
Survivorship Care Plan ◽  
Satisfaction With Care ◽  
Survivorship Care ◽  
Cluster Randomized ◽  
The Impact

e16517 Background: More patient tailored information for cancer survivors is needed. Evidence on effects of implementing Survivorship Care Plans (SCPs), is limited. Aim of this pragmatic cluster randomized trial is to assess the impact of SCPs in routine clinical practice. Primary endpoint is patient satisfaction with information. Secondary endpoints are QoL and health care use. Methods: We built an SCP-application in the web-based Registrationsystem Oncological GYnecology (ROGY), used in our area since 2006. By clicking the SCP-icon in ROGY, a personalized SCP is automatically generated. Twelve hospitals were randomized to usual care or SCP care. In usual care, gynecologists did not have access to the SCP-icon. In SCP care, SCPs are personally discussed and handed to patients. All newly diagnosed endometrial cancer patients (age ≥ 18) were asked to complete a questionnaire after surgery, 6, 12 and 24 months after diagnosis. The questionnaire included the EORTC INFO25 and asked whether patients actually received an SCP. We expected 150 endometrial cancer patients: 75 per arm. We hypothesized that patients receiving SCP care are more satisfied with the information. Results: 201 patients (74%) returned a questionnaire after surgery: 109 SCP arm, 92 usual care arm. Of the patients in the SCP arm, 69% reported receiving an SCP. Analyses according to randomization arm showed that patients in both arms reported similar scores on all scales of the INFO25, including satisfaction with care (87% vs. 82%, SCP vs usual care, p=0.20). Analyses according to actual care received showed that patients who received SCP care reported significantly higher scores (4-18 points) on all scales of the INFO25, including satisfaction with care (91% vs. 78%, SCP vs usual care, p=0.046) compared to those who did not receive SCP care. Conclusions: Even in a situation where SCPs are automatically generated, still one third does not receive an SCP. But, those who receive SCP care report better information provision and satisfaction. Follow-up measures will show whether this ultimately results in better QoL and decreased health care use. Clinical trial information: NCT01185626.

scholarly journals Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study (Preprint)

2018 ◽  
Author(s):  
Will L Tarver ◽  
Bruce W Robb ◽  
David A Haggstrom
Keyword(s):  
Colorectal Cancer ◽  
Health Care ◽  
Cancer Survivors ◽  
Personal Health Record ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Personal Health ◽  
Health Record ◽  
Survivorship Care ◽  
The Impact

BACKGROUND As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. OBJECTIVE The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. METHODS Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. RESULTS CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. CONCLUSIONS For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management.

scholarly journals Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study

JMIR Cancer ◽  
10.2196/10692 ◽  
2019 ◽  
Vol 5 (2) ◽  
pp. e10692
Author(s):  
Will L Tarver ◽  
Bruce W Robb ◽  
David A Haggstrom
Keyword(s):  
Colorectal Cancer ◽  
Health Care ◽  
Cancer Survivors ◽  
Personal Health Record ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Personal Health ◽  
Health Record ◽  
Survivorship Care ◽  
The Impact

Background As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. Objective The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. Methods Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. Results CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. Conclusions For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management.

Evaluating a clinically and culturally informed survivorship care plan trial for African American breast cancer survivors (AABCS).

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 71-71
Author(s):  
Kimlin Tan Ashing ◽  
Kommah McDowell ◽  
Shirley Brown ◽  
Mayra Serrano ◽  
Lily L. Lai ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Breast Imaging ◽  
Self Report ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Trial Participation ◽  
Survivorship Care ◽  
Culturally Informed ◽  
The Impact

71 Background: This randomized control study was designed to evaluate the impact of trial participation on access to survivorship care planning (SCP) and adherence to surveillance recommendations among AABCS. Methods: AABCS were recruited from the State Cancer Registry and support groups. This trial consisted of 1:1 randomization into two conditions: 1) peer navigation + clinically- and culturally-informed breast cancer (BC) materials, and 2) clinically- and culturally-informed BC materials, only. AABCS (N= 29) from advocacy groups were trained as peer navigators, with on-going supervision and monitoring by the research team. The ASCO-SCP template was modified based on input from survivor-advocates to increase clinical, cultural and socio-ecological relevance. The study was implemented using community based-participatory approach. Mailed, self-report assessments were taken at baseline and at 6- and 12-month follow-up. Results: In total, 112 AABCS who were 6-18 months post initial primary treatment for stage 0-3 BC participated in the study. There was a 74% participation rate and a 64% completion rate. At 6- and 12-month follow-up, 65% and 73% reported access to a SCP, respectively. Improvements from baseline in adherence to SCP surveillance recommendations were observed at 6- and 12- month follow-up assessments regarding physical exam (45.6%, 71.2%, 71.0%, respectively), pelvic exam (39.7%, 45.2%, 46.5%, respectively), breast self-exam (45.0%, 79.0%, 81.2%, respectively), and breast imaging (31.1%, 75.6%, 81.1%, respectively) (p< 0.05). There we no significant demographic, medical or study outcome differences by study condition. Conclusions: Our study findings demonstrate the effectiveness of trial participation in facilitating access to SCP and improved adherence to recommended surveillance. Participation of survivor-advocates in developing culturally-informed BC informational and survivorship care strategies can enhance acceptability and sustainability, especially in community and primary care settings. Untapped opportunities exist for survivor-advocate engagement in survivorship research and practice to address inequities. Clinical trial information: NCT01824745.

A model for delivering survivorship care: Integrating the oncology and the primary care setting: Follow-up of the first cohort of patients.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 40-40
Author(s):  
Elena Lorenzi ◽  
Lucia Morello ◽  
Rita Mazza ◽  
Isabella Maria Giovanna Garassino ◽  
Raffaele Cavina ◽  
...  
Keyword(s):  
Primary Care ◽  
Early Stage ◽  
Cumulative Risk ◽  
Latency Period ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Median Latency ◽  
Early Stage Disease

40 Background: In our Institution, we started a survivorship care program that integrates survivors’ health care provided by the oncologist and the primary care physician (PCP).We present the follow-up analysis of the first cohort of patients (pts) enrolled from April to July 2015. Methods: We included adult pts affected by hematologic or solid tumors without evidence of disease from at least 5 years (yrs). They are referred to the PCP with a survivorship care plan. An online platform for cancer survivors (CS) and their PCPs will be available. Progression free survival (PFS), overall survival (OS) and treatment related clinical events were calculated after 17 months from the start of the project. Results: We analyzed data from 269 CS. The median age was 67 yrs, they were mainly females (77%). The most frequent histological types were breast (157), colorectal (37), and hematologic (30) tumors. 189 pts had an early stage disease. 161 pts received chemotherapy with 95 pts receiving anthracycline-based-chemotherapy (ABC), 86% at a cumulative dose > 240 mg/mq. 154 pts underwent radiation therapy (RT), 94% at a dose > 30 Gy. 58 pts received both ABC and RT. The 10-yr cumulative risk of secondary cancer (SC) was 4% with a median latency period from the first cancer diagnosis of 11.3 yrs. 15-yr OS was 98% (one patient died of myocardial infarction), and 15-yr PFS was 96%. The 10-yr cumulative risk of late cardiologic toxicity (LCT) was 11% and 37 pts developed cardiologic complications with a median latency period from treatment of 10.5 yrs. The adhesion to the survivorship care plan was 84%. 13% of pts returned to our Center. The main non-clinical reason for returning was the lack of confidence in PCP. No association was observed between ABC and/or RT exposure and LCT or SC development. Conclusions: In this cohort of patients a high risk of LCT was observed. The risk and latency of SC was similar to the ones reported in literature. The number of cardiac events and SC is too low to give solid conclusions about the association with therapeutic exposure. So far, the compliance of patients and PCPs with the program was high. More data and longer follow-up period are necessary to confirm the accuracy of this model of care.

Measuring impact of survivorship care plans on head and neck cancer patients.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 73-73
Author(s):  
Bridgett Ann Harr ◽  
Joanna Bodmann ◽  
Shlomo A. Koyfman ◽  
Tobenna Igweonu Nwizu ◽  
Nikhil Purushottam Joshi ◽  
...  
Keyword(s):  
Head And Neck Cancer ◽  
Head And Neck ◽  
Neck Cancer ◽  
Survivorship Care Plan ◽  
Patient Specific ◽  
Survivorship Care ◽  
Care Plans ◽  
The Impact ◽  
Over Time

73 Background: At our institution, patients who have completed treatment for a locoregionally confined head and neck cancer are followed in a multidisciplinary head and neck survivorship clinic initiated by the administration of a formal, patient specific survivorship care plan (SCP). We sought to assess the impact of these SCP visits on patient understanding of their disease, its treatment, and potential late effects and follow up plans. Methods: An IRB approved survey was administered by an uninvolved third party, to an unselected sequential series of head and neck cancer survivorship patients at the time of a regularly scheduled follow up visit. The survey focused on the knowledge recalled from the SCP, and whether this changed over time. We analyzed two cohorts of patients, based on whether the SCP had been given to them within the last 18 months or not. Results: Preliminary results from the first 20 patients surveyed are presented. These patients received their SCP 3-27 months before being surveyed. Primary tumor sites included oropharynx (16) and larynx (4) and most patients had been treated with intensity modulated radiation therapy (19) and concurrent cisplatin (11). Conclusions: Although patients’ recall about receiving a formal SCP appeared to diminish over time, the information provided by this SCP plan and subsequent survivorship visits was retained. Whether this reflected the SCP itself, or the reinforcement of continued close follow up survivorship visits cannot be determined, but merits further investigation. [Table: see text]

Is survivorship care plan discussion important to patients?

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. e276-e276
Author(s):  
Amy Eiko Leatherwood ◽  
Charles R. Thomas
Keyword(s):  
Early Stage ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Personalized Care ◽  
Face To Face ◽  
Anonymous Questionnaire ◽  
Need To Evaluate ◽  
Full Discussion

e276 Background: The 2015 Commission on Cancer standard requires that cancer survivors receive a personalized survivorship care plan (SCP). There are variations on how this plan is delivered, depending on time and available staff. These can include mailing the SCP, delivering the SCP at the conclusion of a visit, and fully discussing the SCP at a survivorship visit. There is a need to evaluate the growth in patient satisfaction with not only receipt of SCP, but also personalized care and education regarding the SCP and follow up. Methods: A simple, anonymous questionnaire was routinely given, for quality assurance purposes, to cancer patients who had completed treatment in a radiation oncology setting. Patients were given the questionnaire at the conclusion of a survivorship visit, during which they had received an SCP with full discussion and explanation by the nurse practitioner. The questionnaire asks two questions: 1) Did you find the survivorship visit helpful and/or educational? 2) Was it more helpful to have the survivorship summary explained to you in person? These questions could be answered with a “yes” or “no” answer. Results: This data collection is at a preliminary stage. We received 19 completed questionnaires from patients. Of these 19 questionnaires, 18/19 or 95% of responses were “yes” for question 1. For question 2, 18/19 or 95% of responses were “yes.” Conclusions: This information on patient-perceived value of survivorship visits and SCPs is at an early stage, and more responses will be needed to confirm its validity in the future; however, preliminary data show that the majority of patients are finding survivorship summaries to be helpful and educational to them. Patients are also indicating that visits “in person,” with face-to-face explanation of survivorship summaries, are more helpful than receiving a summary without verbal involvement or explanation.

An evaluation of survivorship care plan program.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 62-62
Author(s):  
Debra Spoljaric ◽  
Brittany Depp ◽  
Allison A. King
Keyword(s):  
Side Effects ◽  
Phase I ◽  
Phase Ii ◽  
Cancer Survivor ◽  
Late Effects ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Plans ◽  
The Impact

62 Background: The Commission on Cancer mandated the development and implementation of survivorship care plans (SCP) in 2015. Minimal evidence exists to suggest SCP are meaningful to survivors and primary care physicians (PCP). We sought to evaluate the usefulness of the SCP as perceived by both survivors and PCP. Methods: Phase I was 8-month pilot using a 7-page SCP detailing medical information and follow up sections addressed to the survivor and to the PCP. To evaluate patient and PCP views on the SCP, a telephone survey was created for patients and a two-page Likert scale survey for PCP was faxed. Phase I evaluations revealed 90% of survivors did not look past page 2 of the document and 16% of PCP felt it was too long and busy to read. The SCP was edited for a 3-page version and implemented in Phase II over 11-months. Results: In Phase I, 78 SCP were delivered to survivors, 58% were surveyed. Of PCP, 24% responded. In Phase II, 895 SCP were delivered, and 274 (31%) survivors surveyed. In Phase I and II, when asked to identify themselves as a cancer survivor, 282 (88%) confirmed and 21 (7%) were unsure. After reviewing the SCP, 93.1% understood their plan of care; 79.6% understood potential late effects; 33% were aware of support or resources available; 96% would recommend to another cancer survivor to get one. In Phase II, 16% (43) of PCP responded. Overall replies were positive: 61% found resource list helpful; 66% wanted more specific information about patient potential late effects; 87% agreed knowing symptoms of late effects is helpful. 70% wanted clarity on follow up tests needed and who should order. PCP overwhelmingly agreed (88%) the SCP is helpful. 90% agreed that knowing ongoing side effects of treatment was important. Conclusions: Survivors liked having their cancer treatment in one concise document and PCP physicians feel that the SCP is meeting their basic needs. PCP are interested in more specific long term side effects to monitor in their patients and direction on what follow-up tests are needed and who is ordering them. Further research is needed to study the impact of SCP on survivors’ health.

Perceived value of cancer survivorship care among Asians and Native Hawaiian/Pacific Islanders.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e22522-e22522
Author(s):  
Jared David Acoba ◽  
Sharon Tamashiro ◽  
Marci Chock
Keyword(s):  
Cancer Survivors ◽  
Racial Differences ◽  
Cancer Survivorship ◽  
Native Hawaiian ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans

e22522 Background: Numerous studies have evaluated the impact of cancer survivorship care. However, no study to date has focused on Asian or Native Hawaiian/Pacific Islander (NH/PI) cancer survivors. It has been well documented that Asian and NH/PI patients often suffer from inferior cancer outcomes compared to White patients, and differences in their experience with cancer survivorship care could contribute to this disparity. Methods: Surveys were sent to 1410 cancer survivors who were treated at a community cancer center with curative intent and who had received survivorship care plans between Jan 2014 and June 2018. The 26-item questionnaire evaluated patients’ perception of various aspects of their survivorship care plan and follow-up physician visits. All responses were anonymous. Results: Of the 360 patients who responded, 24% were White, 54% Asian, and 13% NH/PI. Compared to Whites, Asian and NH/PI patients were younger (p = 0.004), less educated (p = 0.004), and reported a lower income (p < 0.0005). Among all patients, 62% reported that the survivorship care plan was “very helpful” and 86% rated their satisfaction with physician follow-up visits as “very good” to “excellent.” There were no racial differences in satisfaction with either survivorship care plan or physician follow-up. In a multivariate binary logistic regression, Asians and NH/PI patients were significantly more likely to rate ongoing survivorship care as helpful compared to Whites, OR 4.08 (95%CI, 2.13-7.82). Conclusions: There were no racial differences in patient satisfaction with their survivorship care plans and follow-up care. However, Asian and NH/PI patients valued ongoing cancer survivorship care follow-up significantly more than White patients. Whether more extensive survivorship care would lead to improved outcomes among Asian and NH/PI cancer patients should be investigated further.

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