scholarly journals Use of Survivorship Care Plans and Analysis of Patient-Reported Outcomes in Multinational Patients With Lung Cancer

2016 ◽  
Vol 12 (5) ◽  
pp. e527-e535 ◽  
Author(s):  
Abigail T. Berman ◽  
Cristina M. DeCesaris ◽  
Charles B. Simone ◽  
Carolyn Vachani ◽  
Gloria DiLullo ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Patient Reported Outcomes ◽  
Primary Lung Cancer ◽  
The United States ◽  
Cancer Center ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Cognitive Changes ◽  
Care Plans ◽  
Patient Reported

Purpose: Lung cancer is the leading cause of cancer death and is a significant source of morbidity. Patient-reported outcomes (PROs) have been shown to be prognostic for survival. We have analyzed emerging patterns of longitudinal PROs collected in the development of survivorship care plans (SCPs). Methods: OncoLife and the LIVESTRONG Care Plans are Internet-based programs designed to generate unique SCPs. We selected SCPs from patients identifying as survivors of primary lung cancer. Patient-reported demographics and treatment and toxicity data were examined. Effects were categorized by the physiologic system that they affected. Results: Six hundred eighty-nine plans were created for users self-identifying as survivors of primary lung cancer. Average time from diagnosis to reporting was 1.68 years (range, 0 to 24 years). Most were white (85.9%), well educated (61.1% “some college” or higher), and lived in the United States (90.7%). Patients underwent chemotherapy (75.8%), radiotherapy (54.7%), and surgery (54.4%). Neurocognitive symptoms (eg, fatigue, cognitive changes) were the most common (48.8%), especially among those receiving chemotherapy, followed by musculoskeletal/dermatologic symptoms (14.1%) and thoracic symptoms (13.5%). Only 11.2% were initially offered an SCP. Of those offered SCPs, 54.5% were offered by their health care provider, and most often were at a non–university-based cancer center (66.2%). Conclusion: For patients with lung cancer worldwide, it is feasible to obtain PROs and to create SCPs through an Internet-based program. As patients with lung cancer achieve improved survival, further attention should be paid to PROs. Surprisingly, neurocognitive symptoms seem to be the most common issues and therefore the most important to address. Increased effort should be made to provide SCPs, particularly in urban and university cancer center settings.

Use of online survivorship care plans by young adult cancer survivors: Patient characteristics and patient reported outcomes.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 55-55
Author(s):  
Dava Szalda ◽  
Marilyn M. Schapira ◽  
Linda A. Jacobs ◽  
Carolyn Vachani ◽  
James M. Metz ◽  
...  
Keyword(s):  
Young Adult ◽  
Side Effects ◽  
Patient Reported Outcomes ◽  
Adult Survivors ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Providers ◽  
Care Plans ◽  
Adult Cancer Survivors ◽  
Patient Reported

55 Background: Young adult survivors (YAS) are at risk for side effects of cancer therapy and poor post treatment self-management relative to older adult survivors (AS). Survivorship care plans (SCPs) have proved feasible to provide education on symptom management, but the characteristics of YAS who utilize SCPs and patient-reported outcomes (PROs) of YAS via SCPs remains unstudied. Methods: Patient-reported characteristics and outcomes of YAS, age 18 to 39 years, who used a free online SCP generator (OncoLife), between May 2010 and May 2012 are reported. PROs of YAS were compared to AS, age 40-70 years, via frequencies and chi-squared analyses. PROs were queried upon generation of SCP based on diagnosis and treatments received. Results: YAS (n = 1,445, Mage= 31.5 years) and AS (n = 6301, Mage= 56.3 years) were primarily female (69% vs. 78%), Caucasian (76% vs. 86%) and an average of 2.6 years (range 0-20years) vs. 3.2 years (range 0-46 years) since diagnosis and treatment. Most common diagnoses were breast cancer, testicular cancer, lymphoma, thyroid cancer, and sarcomas in YAS vs. breast, colon, lymphoma, prostate, and lung cancer in AS. Three-quarters (75%) of YAS and 70% of AS generated the SCP themselves with the remaining SCPs generated by health care providers. Less than a quarter (22%) of YAS or AS (18%) reported previously receiving a treatment summary. The most commonly endorsed PROs in YAS and AS were neurocognitive changes and fatigue. Fewer YAS than AS endorsed pulmonary concerns and male sexual side effects. The majority of PROs were reported at similar proportions by YAS and AS (see table). Conclusions: In patients who generated an OncoLife SCP, YAS reported similar rates of treatment-related side effects to those reported by AS demonstrating SCPs as a mechanism to capture and address off-therapy issues for all survivors. [Table: see text]

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

Updated patient reported outcomes and survivorship care plan use by survivors of colorectal cancer (CRC).

2014 ◽  
Vol 32 (3_suppl) ◽  
pp. 527-527
Author(s):  
James M. Metz ◽  
Margaret K. Hampshire ◽  
Carolyn Vachani ◽  
Gloria A. Di Lullo ◽  
Christine Hill-Kayser
Keyword(s):  
Colorectal Cancer ◽  
Sexual Function ◽  
Late Effects ◽  
Patient Reported Outcomes ◽  
Care Plan ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Patient Reported ◽  
Gi Toxicity

527 Background: Colorectal cancer patients may be at risk for late effects after treatment, the impact of which may difficult to evaluate using conventional methods. Here, we described patient reported outcomes after CRC, as well as use of survivorship care plans. Methods: Patient-reported data were gathered via a convenience sample frame from CRC survivors voluntarily utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and through the OncoLinkwebsite, the tool allows survivors to enter data regarding diagnosis, demographics, and treatments, and provides customized guidelines for future care. During use of the tool, CRC survivors are queried regarding late effects associated with specific treatments, and asked to answer “yes,” “no,” or “I don’t know.” They are also asked to score GI toxicity using WHO criteria. All data have been maintained with IRB approval. Results: 657 CRC survivors utilized the care plan and answered queries regarding late effects; 64% were female and 82% Caucasian. Median diagnosis age was 50 (24 – 76) and median current age 54 (24 – 77). Many reported having had multimodality therapy - 97% surgery, 89% chemotherapy, and 37% radiation. Overall, 63% reported chronic changes in bowel patterns, 38% chronic diarrhea, 9% bowel obstruction, 18% hernia development, 8% radiation colitis, and 2% fistula formation. Of 249 survivors who graded GI toxicity, 23% reported 4-6 stools per day, and 18% > 6 stools per day or incontinence. When queried regarding sexual function, 35% of men reported worse erectile function than pre-treatment, and 42% of women reported sexual changes such as vaginal dryness. A follow-up survey was completed by 31 (5%) of users, who reported that care plans improved knowledge about late effects (90%) and potential related treatments and tests (83%). Conclusions: Survivors using this tool report significant toxicity after cancer treatment, mainly related to GI and sexual function. Survivors appear to gain knowledge from survivorship care plans. The data reported here may be of significant impact in future study of quality of life, as well as patient counseling and survivor care.

A health system wide approach to the delivery of survivorship care plans.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 42-42
Author(s):  
Jennifer R. Klemp ◽  
Heather Vanbebber ◽  
Tanya Folker ◽  
Lisa Serig ◽  
Tim Metcalf ◽  
...  
Keyword(s):  
Health System ◽  
Medical Center ◽  
Academic Medical Center ◽  
Cancer Center ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Clinical Patient ◽  
Care Plans ◽  
Accreditation Standards ◽  
Patient Reported

42 Background: Survivorship care plans (SCPs) are recognized by organizations including the American Society of Clinical Oncology and the American College of Surgeons Commission on Cancer, as a best practice for improving survivor care. Little evidence supports this and hospitals and cancer centers are scrambling to meet deadlines for SCP development and delivery. The University of Kansas Cancer Center (KUCC) addressed this utilizing electronic health record (EHR) integration, developing a health system wide approach to education and delivery, and building referral workflows to primary care and specialists. We report on this approach to developing and growing a survivorship care program. Methods: KUCC is a NCI designated cancer center within an academic medical center and health system, with 11 outpatient locations across the Kansas City. Under the guidance of a multidisciplinary team: providers, health care informatics, administrators, nursing, tumor registry, quality improvement, and researchers, KUCC developed a step-wise process to deliver comprehensive survivorship care across the health system. This multi-year initiative aligned with institutional accreditation standards and an ongoing focus on expanding evidence based, comprehensive cancer and supportive care. Results: In 2014 a formal survivorship program plan was put into action: Support from leadership, providers, research priority; Staff and patient survivorship education & training; Integrated delivery of survivorship care at all locations with direct interaction and feedback from cancer care teams; Short & long-term programmatic goals; Management and referral of late effects of cancer; EPIC integrated SCP template: auto-populated, customized, personalized; treatment summary uses tools that pull in data stored discreetly in the patient "file"; SCP delivery targeting COC phase-in timeline: 2015: n= 539 (10% projection n= 434); 2016: n= 1,355 (25% projection n=1,253). Conclusions: This step-wise, integrated approach to survivorship care has resulted in a health system wide delivery of SCPs and meeting national accreditation standards. Next steps include the evaluation of cost and clinical/patient reported outcomes.

Challenges in the implementation of survivorship care plans in an NCI-designated cancer center.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 68-68 ◽  
Author(s):  
Mary Mendelsohn ◽  
Joanne E. Mortimer ◽  
Leslie Popplewell ◽  
Lily L. Lai ◽  
Ellie Maghami ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Cancer Center ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Coordinator ◽  
Nurse Care ◽  
Care Plans ◽  
Patient Reported

68 Background: The development and initiation of Survivorship Care Plans (SCPs) across all disease sites was identified as a Strategic Initiative Goals for 2015 by the Clinical Cancer Committee. The 2012 Commission on Cancer requirements for certification provided an additional incentive to meet this goal. Establishing a process that includes the development and distribution of a SCP’s within the electronic medical record (EMR) is necessary to improve on the completion of SCP’s and to improve the utilization of surveillance tests in cancer survivors. We describe the process developed at a free-standing NCI cancer center to meet the standard of SCP provision to all cancer patients. Methods: A multi-disciplinary subcommittee of the Cancer Committee was designated to develop the overall strategic plan for the implementation of this standard. It met with disease teams to facilitate a treatment summary from Cancer Registry data, identify patient reported symptoms using a self report tablet (SupportScreen). Electronic care plans were created using survivorship research program templates and ASCO framework for each disease site team. The disease team Nurse Care Coordinator inputs information into the eSCP. Results: Templates have been established within the EMR in the documents section under survivorship care plan title. These can be initiated and modified when the Nurse Care Coordinator chooses to start them. The disease teams have established their time points for SCP presentation to their patients. Using the cancer registry to provide data related to staging, treatments and genetic testing has helped minimize development time. Individual survivor’s concerns will be reflected in patient reports and physician symptom documentation. This eSCP completion process is a pilot program within the breast cancer disease team and will be expanded to include patients with head & neck and hematologic malignancies with a goal of including all patients by mid 2016. Conclusions: The goal of improving survivorship care coordination and compliance with surveillance guidelines is challenging. Maximizing available interdisciplinary resources has helped to create a viable Survivorship Care plan at our institution.

scholarly journals Use of Survivorship Care Plans in the United States: Associations With Survivorship Care

2013 ◽  
Vol 105 (20) ◽  
pp. 1579-1587 ◽  
Author(s):  
L. P. Forsythe ◽  
C. Parry ◽  
C. M. Alfano ◽  
E. E. Kent ◽  
C. R. Leach ◽  
...  
Keyword(s):  
United States ◽  
The United States ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans

First Report of Worldwide Use of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

2008 ◽  
Vol 9 (5) ◽  
pp. 298
Author(s):  
J.M. Metz ◽  
C.E. Hill-Kayser ◽  
M.K. Hampshire ◽  
L.A. Jacobs ◽  
C. Vachani
Keyword(s):  
Lung Cancer ◽  
Cancer Survivors ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
First Report ◽  
Care Plans ◽  
Use Of Internet

Who is receiving survivorship care plans? Findings from the 2012 Livestrong survey.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9608-9608
Author(s):  
Ruth Rechis ◽  
Carla Bann ◽  
Stephanie Nutt ◽  
Linda Squiers ◽  
Naveen Rao
Keyword(s):  
Medical Center ◽  
Care Plan ◽  
Cancer Center ◽  
Survivorship Care Plans ◽  
Institute Of Medicine ◽  
Survivorship Care ◽  
Long Term Effects ◽  
Care Plans ◽  
Key Stakeholders

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

Tailored survivorship care plans for head and neck cancer patients.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 51-51
Author(s):  
Andrew L. Salner ◽  
Shrujal S. Baxi ◽  
Elizabeth Fortier ◽  
Talya Salz
Keyword(s):  
Head And Neck Cancer ◽  
Head And Neck ◽  
Neck Cancer ◽  
Primary Care Providers ◽  
Cancer Surveillance ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Providers ◽  
Care Plans ◽  
Patient Reported

51 Background: Survivorship care plans SCPs typically include generic advice for cancer surveillance, management of late effects (LEs), wellness recommendations (WRs), and cancer screening. We developed a platform called HN-STAR that uses electronic patient-reported outcomes (ePROs) and evidence-based management guidelines to generate tailored SCPs for head and neck cancer survivors (HNCSs), a population particularly vulnerable to various LEs. We surveyed HNCSs and their primary care providers (PCPs) regarding the SCP to assess its acceptability and usefulness. Methods: HNCSs at 2 cancer hospitals used HN-STAR. Prior to a routine clinic visit, HNCSs used a validated ePRO measure (PRO-CTCAE) to report 22 physical LEs and other measures to assess wellness. Based on the visit discussion, HN-STAR generated an SCP that included a treatment summary, WRs, and LE management plans. HNCSs indicated their perceptions of the SCP and intentions to adhere to WR and LE management recommendations. PCPs reported on the SCP utility and their comfort in managing WRs and LEs. Results: 47 HNCSs completed surveys (mean 5.4 yrs. from treatment completion). Most were white (89%), male (85%), had an oropharynx tumor (58%), and received multimodality therapy (81%). 51% experienced at least 9 of the 22 LEs in the last month (mean 8.2/person). 91% of HNCSs felt the SCP was easy to follow. 98% intended to follow recommendations for LEs management and 98% reported they would refer back to the SCP. 87% said they plan to share the SCP with a PCP. 23 PCPs completed the survey. 95% were satisfied with the SCP and 95% reported they would like to have one for every cancer patient. PCPs expressed varying levels of comfort in managing specific LEs of head and neck cancer (30-80%). Conclusions: Among HNCSs, an automatically generated SCP that was tailored to their WRs and LEs was acceptable, was trusted, and provided recommendations they intended to follow. PCPs found the SCP useful, and SCPs may help improve their comfort with LE management. Patient-centered SCPs that focus on existing LEs hold promise as a means to help survivors and PCPs manage survivorship issues.

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