Evaluating Survivorship Care Plans: Results of a Randomized, Clinical Trial of Patients With Breast Cancer

2011 ◽  
Vol 29 (36) ◽  
pp. 4755-4762 ◽  
Author(s):  
Eva Grunfeld ◽  
Jim A. Julian ◽  
Gregory Pond ◽  
Elizabeth Maunsell ◽  
Douglas Coyle ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Patient Reported Outcomes ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Event Scale ◽  
Care Plans ◽  
Patient Reported ◽  
Secondary Outcomes ◽  
The Impact

Purpose An Institute of Medicine report recommends that patients with cancer receive a survivorship care plan (SCP). The trial objective was to determine if an SCP for breast cancer survivors improves patient-reported outcomes. Patients and Methods Women with early-stage breast cancer who completed primary treatment at least 3 months previously were eligible. Consenting patients were allocated within two strata: less than 24 months and ≥ 24 months since diagnosis. All patients were transferred to their own primary care physician (PCP) for follow-up. In addition to a discharge visit, the intervention group received an SCP, which was reviewed during a 30-minute educational session with a nurse, and their PCP received the SCP and guideline on follow-up. The primary outcome was cancer-related distress at 12 months, assessed by the Impact of Event Scale (IES). Secondary outcomes included quality of life, patient satisfaction, continuity/coordination of care, and health service measures. Results Overall, 408 survivors were enrolled through nine tertiary cancer centers. There were no differences between groups on cancer-related distress or on any of the patient-reported secondary outcomes, and there were no differences when the two strata were analyzed separately. More patients in the intervention than control group correctly identify their PCP as primarily responsible for follow-up (98.7% v 89.1%; difference, 9.6%; 95% CI, 3.9 to 15.9; P = .005). Conclusion The results do not support the hypothesis that SCPs are beneficial for improving patient-reported outcomes. Transferring follow-up to PCPs is considered an important strategy to meet the demand for scarce oncology resources. SCPs were no better than a standard discharge visit with the oncologist to facilitate transfer.

Patient-reported survivorship care practices and late effects after treatment of Hodgkin (HL) and non-Hodgkin lymphoma (NHL).

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 119-119
Author(s):  
Melissa Frick ◽  
Carolyn Vachani ◽  
Margaret K. Hampshire ◽  
Christina Bach ◽  
Karen Arnold-Korzeniowski ◽  
...  
Keyword(s):  
Heart Disease ◽  
Cognitive Change ◽  
Transitions Of Care ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Convenience Sample ◽  
Care Plans ◽  
Patient Reported ◽  
Care Practices

119 Background: Multimodal treatment of HL and NHL yields excellent outcomes, however, survivors are at risk for developing myriad late- and long-term effects (LLTEs). We describe survivorship care practices and LLTEs reported by HL/ NHL survivors. Methods: From a convenience sample of 964 HL (37%) and NHL (63%) cancer survivors using a publicly available Internet-based survivorship care plan (SCP) tool between 2011-2016, we examined cancer care and toxicity profile data. Results: Of all survivors, 67% were female and 84% were Caucasian; median age of diagnosis was 28y for HL and 49y for NHL survivors with median fu of 5y and 2y, respectively. 88% were free of cancer, 9% with recurrent or secondary malignancy, and 3% with metastatic disease. Chemotherapy was delivered to 89% of HL and 94% of NHL survivors, and radiation (RT) to 64% and 28%, respectively. Of those receiving RT, 96% (n = 217) HL and 61% (n = 106) NHL survivors received chest/mantle RT. Few reported receipt of previous SCP (13%) or treatment summary (4%). Most reported continued care from an oncologist (49%) or in combination with a PCP (19%). A shift to PCP management alone was observed, increasing from 2% of survivors if < 2y fu to 30% once ≥2y fu. Survivors who received chest RT reported: hyper- or hypothyroidism (35%), thyroid nodules (8%), speaking/swallowing changes (20%), heart disease (14%), pulmonary fibrosis/pneumonitis (12%), and skin cancers within the RT field (9%). 6 of 321 (2%) who received chest RT reported secondary breast cancers, compared to zero in the group not receiving chest RT with median time to breast cancer 20.5y (R 6-32 years). Receipt of chemotherapy was associated with: chronic fatigue (56%), cognitive change (56%), peripheral neuropathy (35%), sexual changes (15% of males, 35% of females), and heart disease (10%). Conclusions: While this population achieves excellent disease outcomes, survivors report a substantial burden of LLTEs, suboptimal delivery of survivorship information, and transitions of care in follow-up. Multiple opportunities thus exist through which SCPs may be used to improve awareness regarding survivorship/ LLTEs and communicate follow-up care plans between survivors and treatment teams.

Effects of Survivorship Care Plans on patient reported outcomes in ovarian cancer during 2-year follow-up – The ROGY care trial

2017 ◽  
Vol 145 (2) ◽  
pp. 319-328 ◽  
Author(s):  
Belle H. de Rooij ◽  
Nicole P.M. Ezendam ◽  
Kim A.H. Nicolaije ◽  
M. Caroline Vos ◽  
Johanna M.A. Pijnenborg ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Patient Reported Outcomes ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Patient Reported

scholarly journals Exploring Interactive Survivorship Care Plans to Support Breast Cancer Survivors: Protocol for a Randomized Controlled Trial

10.2196/23414 ◽  
2020 ◽  
Vol 9 (12) ◽  
pp. e23414
Author(s):  
Akshat Kapoor ◽  
Priya Nambisan
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Self Management ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Breast Cancer Survivorship ◽  
Care Plans ◽  
The Impact

Background Breast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits. Objective The overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes. Methods We will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors’ online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties. Results We have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years. Conclusions The results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management. International Registered Report Identifier (IRRID) PRR1-10.2196/23414

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]

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.

scholarly journals Views of family physicians about survivorship care plans to provide breast cancer follow-up care: exploration of results from a randomized controlled trial

2015 ◽  
Vol 22 (4) ◽  
pp. 252 ◽  
Author(s):  
M.A. O'Brien ◽  
E. Grunfeld ◽  
J. Sussman ◽  
G. Porter ◽  
M. Hammond Mobilio
Keyword(s):  
Breast Cancer ◽  
Randomized Controlled Trial ◽  
Controlled Trial ◽  
Family Physicians ◽  
Survivorship Care Plan ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Randomized Controlled

Background The U.S. Institute of Medicine recommends that cancer patients receive survivorship care plans, but evaluations to date have found little evidence of the effectiveness of such plans. We conducted a qualitative follow-on study to a randomized controlled trial (rct) to understand the experiences of family physicians using survivorship care plans to support the follow-up of breast cancer patients.MethodsA subset of family physicians whose patients were enrolled in the parent rct in Ontario and Nova Scotia were eligible for this study. In interviews, the physicians discussed survivorship care plans (intervention) or usual discharge letters (control), and their confidence in providing follow-up cancer care.Results Of 123 eligible family physicians, 18 (10 intervention, 8 control) were interviewed. In general, physicians receiving a survivorship care plan found only the 1-page care record to be useful. Physicians who received only a discharge letter had variable views about the letter’s usefulness; several indicated that it lacked information about potential cancer- or treatment-related problems. Most physicians were comfortable providing care 3–5 years after diagnosis, but desired timely and informative communication with oncologists. Conclusions Although family physicians did not find extensive survivorship care plans useful, discharge letters might not be sufficiently comprehensive for follow-up breast cancer care. Effective strategies for two-way communication between family physicians and oncologists are still lacking.

Integrating the primary care physician into cancer follow-up.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 102-102 ◽  
Author(s):  
Andrew L. Salner ◽  
Deborah Walker ◽  
Amanda Seltzer ◽  
SarahLena Panzer ◽  
Carrie Stricker ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Primary Care ◽  
Primary Care Physician ◽  
Care Physician ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Plans ◽  
Follow Up Care

102 Background: After a diagnosis of breast cancer, it can be difficult for patients to understand the role their primary care physician (PCP) should play in their follow up care. Methods: 65 women (mean age 60 years, SD = 10) with breast cancer (stage 0-III) were seen by a nurse practitioner for a 60-90 minute consultative survivorship visit and received a treatment summary and personalized survivorship care plan (SCP) utilizing Carevive Care Planning Systems software. The Carevive system incorporates patient-reported and clinical data to create tailored care plans with personalized recommendations for follow up care and supportive referrals, including direction to follow up with primary care for specific care and health maintenance activities. Approximately 6 weeks following their survivorship care visit, patients completed a survey assessing their use of and satisfaction with the SCP. Patients were advised that the SCP would be mailed to their referring oncologist and primary care physician. Results: Out of 65 sent, 35 surveys have been completed to date. Survivors were diagnosed approximately 10 months prior, and all were within 6 months following completion of treatment. All patients (100%) reported that they read, or planned to read, their survivorship care plan packet carefully. While all care plans included a recommendation to follow up with their PCP, only (71%) of survivors remembered receiving this recommendation. Of those who did, most (74%) had either seen or scheduled an appointment with their PCP. Patients who reported higher anxiety at the time of the survivorship visit were more likely to report that the follow up care plan helped them take action about seeing their PCP (p = .03). Conclusions: Coordination between primary and oncology care providers has previously been shown to improve the quality of care for cancer survivors. SCPs that emphasize the importance of and activities to be undertaken in primary care may help to improve this coordination. Continuation of this research will help to better understand how to integrate the primary care physician into cancer follow up care. Updated data will be shared at time of presentation.

Breast cancer survivorship care plan: Patient satisfaction with a web-based application.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 50-50 ◽  
Author(s):  
Anne Moore ◽  
Anna Carlson ◽  
Naomi Kornhauser ◽  
Sarah E. Schneider ◽  
Eleni Andreopoulou ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Primary Care ◽  
Patient Satisfaction ◽  
Patient Data ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Web Based ◽  
Care Plans ◽  
Survey Results

50 Background: The American College of Surgeons Commission on Cancer Standard 3.3 mandates that by 2018, oncologists provide Survivorship Care Plans (SCPs) to more than 75% of Stage 1-3 breast cancer survivors. Preparation and delivery of SCPs is time-consuming and requires dedicated staff commitment. Working with PatientsWithPower(PWP), a digital health company supporting patient decision-making for breast cancer, we developed a web-based SCP and surveyed patients regarding their satisfaction with the SCP. The objective of this study was to assess patient satisfaction with the PWP SCP. Methods: SCP’s were prepared using data extracted from the electronic medical record (EMR) and PWP software. A one-page SCP was presented to each patient by the Nurse Practitioner (NP) during a routine visit after patients completed active treatment. Results were reviewed after all surveys were completed. Fifty women with Stage 0-3 breast cancer participated in the IRB approved study and reported their satisfaction with the PWP SCP via online survey. Results: Using patient data in the EMR, the PWP plan took about 45 minutes to prepare. Once completed, NPs spent 10-15 minutes with each patient reviewing the SCP. Patient surveys indicated that 98% of patients felt it was important to receive a SCP, 84% planned to use it to plan follow up management, and 75% intended to share the SCP with their primary care physician. According to patients, the most valuable parts of the SCP were diagnosis and treatment history, and the follow up schedule. More than 70% of women requested additional information about future screening for recurrence, nutrition, and long-term side effect management. 92% of women appreciated the electronic “living document” that can be easily updated at subsequent visits. Conclusions: Presenting SCPs to patients is an essential component of high-quality cancer care. PWP’s online platform facilitates the development and delivery of SCPs by organizing and storing on-going patient data to make future SCP updates easy and efficient. Our patient satisfaction survey results underscore the value of SCPs, particularly for follow-up management and communications with primary care doctors.

scholarly journals Exploring Interactive Survivorship Care Plans to Support Breast Cancer Survivors: Protocol for a Randomized Controlled Trial (Preprint)

2020 ◽  
Author(s):  
Akshat Kapoor ◽  
Priya Nambisan
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Self Management ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Breast Cancer Survivorship ◽  
Care Plans ◽  
The Impact

BACKGROUND Breast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits. OBJECTIVE The overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes. METHODS We will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors’ online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties. RESULTS We have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years. CONCLUSIONS The results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/23414

Patient-Reported Survivorship Care Practices and Late Effects After Treatment of Hodgkin and Non-Hodgkin Lymphoma

2018 ◽  
pp. 1-10
Author(s):  
Melissa A. Frick ◽  
Carolyn C. Vachani ◽  
Margaret K. Hampshire ◽  
Christina Bach ◽  
Karen Arnold-Korzeniowski ◽  
...  
Keyword(s):  
Adverse Effects ◽  
Hodgkin Lymphoma ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Convenience Sample ◽  
Care Plans ◽  
Non Hodgkin Lymphoma ◽  
Patient Reported

Purpose Multimodal treatment of Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL) yields excellent outcomes; however, survivors are at risk of developing myriad late and long-term effects. Methods From a convenience sample of 964 survivors of HL (37%) and NHL (63%) using a publicly available Internet-based survivorship care plan (SCP) tool between 2011 and 2016, we examined patient-reported cancer care, toxicities, and survivorship care data. Results Of all survivors, 67% were female and 84% were white and 88% were free of cancer. Median age of diagnosis was 28 years for survivors of HL and 49 years for NHL. Many survivors reported treatment with chemotherapy (92%), surgery (52%), and/or radiation (41%), with most radiation delivered to chest/mantle fields (81%). Survivors reported a diversity of radiation- and chemotherapy-related sequelae, including thyroid dysfunction, speaking and/or swallowing changes, pulmonary fibrosis/pneumonitis, heart disease, chronic fatigue, neurocognitive decline, neuropathy, sexual changes, and secondary breast cancers. Few reported receipt of previous survivorship information. Most reported management/comanagement by an oncology specialist after active treatment; however, a shift to management by primary care provider alone was observed as a trend over time in follow-up. Sixty-six percent of users who responded to a follow-up survey reported that they intend to share the SCP with their health care team. Conclusion Survivors of lymphoma, many of whom are free of disease, report a substantial burden of late and long-term adverse effects, suboptimal delivery of survivorship information, and transitions of care in follow-up in which fragmented systems and/or poor communication may contribute to unmet survivor needs. Multiple opportunities thus exist for which SCPs may be used to improve awareness regarding survivorship and associated adverse effects in addition to communicating follow-up care plans between survivors and treatment teams.

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