Survivor feedback on a late effects-oriented survivorship care plan for head and neck cancer.

e21596 Background: Survivorship care plans (SCPs) typically include generic advice for the management of late effects (LEs) that can occur, rather than addressing LEs that the survivor actually has. We developed a platform called HN-STAR that uses electronic patient-reported outcomes (ePROs) and evidence-based LE management to generate a personalized SCP for survivors of head and neck cancer (HNC), a population vulnerable to various LEs. We assessed HNC survivors’ experiences with HN-STAR to ensure its acceptability and usefulness. Methods: Disease-free HNC survivors at two cancer hospitals used HN-STAR in conjunction with a routine survivorship visit. Prior to the visit, survivors used a validated ePRO measure (PRO-CTCAE) to report up to 22 physical LEs. Based on clinic visit discussions, HN-STAR generated an SCP that included a treatment summary and LE management plans. Survivors indicated their level of agreement to statements regarding the ease of use of the ePROs, content of the SCP, and intentions to adhere to LE management recommendations. Results: 47 survivors completed surveys (mean 5.4 years from treatment completion). Most were white (89%), male (85%), had an oropharynx tumor (58%), and received multimodality therapy (81%). More than half (51%) experienced at least 9 of the 22 LEs in the last 30 days (mean 8.2 per person). Most survivors reported that completing ePROs improved the discussions with their provider (98%), the quality of their care (96%), and their communication with their provider (98%). 91% agreed the SCP was the right length, and 98% agreed it was easy to follow. 98% intended to follow at least some of the recommendations for LEs management, and 98% reported feeling confident that they could follow the recommendations. The majority agreed that the SCP accurately summarized the clinic visit (98%), they would refer back to the SCP (98%), they trust the SCP (100%), and they plan to share the SCP with a primary care provider (87%). Conclusions: Among HNC survivors, an automatically generated SCP that was tailored to their LEs was acceptable, was trusted, and provided recommendations they intended to follow. Patient-centered SCPs that focus on existing LEs hold promise as a means to help survivors manage LEs.

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Survivorship care plan visits: Mixed methods analysis of patient surveys.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.34_suppl.174 ◽

2018 ◽

Vol 36 (34_suppl) ◽

pp. 174-174

Author(s):

Natalie Garces ◽

Daisuke Goto ◽

Carol J. Farhangfar ◽

Tara Eaton

Keyword(s):

Qualitative Analysis ◽

Head And Neck ◽

Subgroup Analysis ◽

Statistical Significance ◽

Care Plan ◽

Survivorship Care Plan ◽

Rank Test ◽

Survivorship Care ◽

Care Plans ◽

Patient Reported

174 Background: Survivorship Care Plans (SCPs) are endorsed by cancer advocacy groups and required for accreditation, yet benefits are unclear. The purpose of this quality initiative was to assess the benefit of SCPs. Methods: From June 2015 to September 2017, survivors who had a SCP visit were surveyed to report their understanding of key survivorship topics pre/post visit; the most valuable information learned and plans to use the information. Descriptive statistics and qualitative analysis were performed. Subgroup analysis was performed for age, insurance, marital status, and race. Wilcoxon signed-rank test computed statistical significance. Results: Of 794 surveys, 657 (83%) were complete and evaluable. Surveys were collected from breast (436 [66%]), lung (45 [7%]), colorectal (33 [5%]), head and neck (25 [4%]), melanoma (24 [4%]), endometrial and ovarian (20 each [3%]), and other (54 (8%) cancer survivors. Statistically significant ( p<0.05) improvements in all questions (Table 1) were noted across nearly all disease sites. Exceptions were endometrial, head and neck, and melanoma, which already had > 75% answering “completely understand” for selected questions pre- SCP visit. Subgroup analysis found no significant differences. Self-management was a theme in the “other” insurance status subgroup (14) qualitative analysis. Four (36%) indicated an interest in information about programs to improve healthy behaviors. Conclusions: There was major positive impact of the SCP visit on patient-reported understanding of all survivorship topics. Providers may benefit from focusing SCP discussion on areas the survivor reports as “some” or “no” understanding pre- SCP visit. Providers should connect survivors to resources to support self-identified needs. [Table: see text]

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Tailored survivorship care plans for head and neck cancer patients.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.7_suppl.51 ◽

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

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.73 ◽

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]

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

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.3_suppl.527 ◽

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.

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Innovation, education, and research: A multidisciplinary survivorship care model.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.10519 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 10519-10519

Author(s):

Hira Latif ◽

Patrick Martone ◽

James Edward Shaw ◽

Eric Wisotzky ◽

Asma Ali Dilawari

Keyword(s):

Physical Function ◽

Cardiovascular Health ◽

The United States ◽

Screening Tools ◽

Care Plan ◽

Survivorship Care Plan ◽

Institute Of Medicine ◽

Survivorship Care ◽

Care Plans ◽

Patient Reported

10519 Background: Advances in early detection, therapeutics, and an aging population are expected to lead to an increase in the number of cancer survivors in the United States to 20 million by year 2026. The Institute of Medicine and Commission on Cancer recommends delivery of survivorship care plans on completion of curative treatment. While models exist for high-quality survivorship care, institutions encounter barriers such as lack of resources and limited training in survivorship. Our institution piloted a unique model combining fellows’ education with guideline-driven recommendations from a multidisciplinary team to provide consolidated survivorship care. Methods: A survey for self-reported competence and experience was conducted amongst the hematology and oncology fellows at the MedStar Washington Hospital Center. A bimonthly clinic staffed by a medical oncologist, oncology fellow and a cancer rehabilitation fellow was initiated in September 2018. Didactic lectures, curriculum syllabus and recommended assessments were established. Screening tools for distress, patients’ confidence in knowledge about survivorship and physical function via PROMIS 20a were administered; clinical assessments including the “6-minute walk test” were used to assess cardiovascular health. Results: Most fellows had not encountered a survivor of lung (16%), GU (0%) and head and neck cancer (33%). Majority of the fellows had never delivered a survivorship care plan. Scores were low in competence and experience in survivorship. By December 2018, 15 patients with 17 diagnoses of cancer were referred to the clinic. 10 were survivors of hematologic malignancies while 7 were of solid tumors. The no-show rate was 40%. Fellows conducted the assessments and were supervised by an oncology attending. Of the 9 patients seen, 4 were referred for physical therapy; additional referrals for psychology and cardiology were frequent. Conclusions: A comprehensive multidisciplinary survivorship clinic focusing on fellows’ education is a feasible model for delivery of survivorship care and aims to bridge the gap in experience and competence of fellows. Future goals include re-assessment of patient-reported outcomes, physical function, and competence of fellows.

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Use of Internet-based Survivorship Care Plans by Survivors of Head and Neck Cancer

International Journal of Radiation Oncology*Biology*Physics ◽

10.1016/j.ijrobp.2009.07.889 ◽

2009 ◽

Vol 75 (3) ◽

pp. S388 ◽

Cited By ~ 2

Author(s):

C.E. Hill-Kayser ◽

C. Vachani ◽

M.K. Hampshire ◽

J.M. Metz

Keyword(s):

Head And Neck Cancer ◽

Head And Neck ◽

Neck Cancer ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans ◽

Use Of Internet

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

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.68 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. 68-68 ◽

Cited By ~ 1

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.

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Survivorship needs after head and neck cancer treatment.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.10062 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. 10062-10062

Author(s):

Callie Berkowitz ◽

Deborah H. Allen ◽

Jennifer Tenhover ◽

Leah L. Zullig ◽

Jonathan E. Fischer ◽

...

Keyword(s):

Hearing Loss ◽

Head And Neck Cancer ◽

Cancer Treatment ◽

Head And Neck ◽

Neck Cancer ◽

Primary Care Providers ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans

10062 Background: Head and neck cancer (HNC) survivors experience significant sequelae of treatment, including long-term physical side effects and ongoing surveillance for recurrence and secondary malignancy. Given the complicated trajectory of HNC survivors, survivorship care plans educating patients and their caregivers about treatment and recovery may be beneficial. However, little is known about patients’ knowledge gaps related to survivor issues. Methods: Through a prospective anonymous self-administered survey, we evaluated the baseline knowledge of HNC survivors regarding common post-treatment issues and mediating factors. Forty-one HNC patients within 3 months of completing treatment participated between July-November 2016. Descriptive statistics were used to characterize patient responses. Results: Patients had undergone a variety of treatment modalities: radiation (97%), chemotherapy (71%), and surgery (39%). 85% of patients had primary care providers, 56% had regular dental care, and 44% had dental insurance. 78% had caregivers. HNC survivors’ correct responses to side-effect (SE) knowledge questions were lowest for items regarding hearing loss (15%), sleep (33%), tiredness (38%), and anxiety (49%). Only 28% correctly identified cancer risk with alcohol intake. 87% correctly linked tobacco products to cancer recurrence. Patients were most interested in learning via discussions with nurse or doctor (76%) followed by reading written materials (61%), and researching online (32%). Most patients desired to learn more about their cancer (73%), short-term SE (80%), and long-term SE (77%). Conclusions: Our study demonstrated clear gaps in knowledge and healthcare access that may inform targeted, individualized survivorship care plans. Patients had the largest knowledge deficits for alcohol use and recurrence, hearing loss after treatment, and a variety of emotional effects of cancer treatment. These topics should be addressed during delivery of survivorship care plans and surveillance encounters to improve survivorship knowledge.

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