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.

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.

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.

Recall and uptake of survivorship care plan recommendations.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 67-67
Author(s):  
Andrew L. Salner ◽  
Deborah Walker ◽  
Amanda Seltzer ◽  
SarahLena Panzer ◽  
Carrie Stricker ◽  
...  
Keyword(s):  
Breast Cancer Survivors ◽  
Pilot Project ◽  
Planning System ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Plans ◽  
Patient Reported ◽  
Treatment Data

67 Background: Despite the growing delivery of survivorship care plans (SCPs), little research has examined survivors’ recall and adoption of SCP recommendations, including those based on patient-reported symptoms and concerns. Methods: 65 stage 0-III breast cancer survivors participated in this pilot project. Patients completed an electronic patient-reported outcomes (ePRO) survey prior to a visit with a nurse practitioner, who delivered a tailored SCP generated by the Carevive Care Planning System (CPS) using evidence-based algorithms driven by ePRO and diagnosis/treatment data. Approximately 6 weeks later, patients completed a survey to evaluate their recall and any corresponding action taken. Actual SCP recommendations were extracted from the Carevive CPS database and matched to follow-up surveys to determine recall accuracy. Results: Data were analyzed for 35 patients completing follow-up surveys to date. SCPs contained an average of 22.2 recommendations per patient, almost half (n = 10.7) for active symptoms/supportive care issues. Recommendations were broken down into 3 groups 1) Surveillance, 2) Prevention, and 3) Intervention; see table below for select results. Of note, lymphedema-related recommendations were recalled accurately more often (p = 0.005) by those with symptoms vs. those advised on prevention. Conclusions: Incorporating an ePRO survey into SCP delivery enables tailoring to patient needs and concerns, which may in turn enhance recall and follow through given saliency. Patients tended to recall more accurately SCP recommendations for active or more severe symptoms. Additional research is needed to maximize retention and follow through on SCP recommendations. [Table: see text]

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

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]

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

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]

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

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21596-e21596
Author(s):  
Talya Salz ◽  
Mary S. McCabe ◽  
Kevin C. Oeffinger ◽  
Rebecca B Schnall ◽  
Stacie Corcoran ◽  
...  
Keyword(s):  
Head And Neck Cancer ◽  
Head And Neck ◽  
Neck Cancer ◽  
Late Effects ◽  
Clinic Visit ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Plans ◽  
Patient Reported

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.

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.

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

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.

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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