Patterns of Survivorship Care and Patient-Reported Outcomes after Treatment for Extremity Sarcoma

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]

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

Journal of Oncology Practice ◽

10.1200/jop.2015.008904 ◽

2016 ◽

Vol 12 (5) ◽

pp. e527-e535 ◽

Cited By ~ 4

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.

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

Gynecologic Oncology ◽

10.1016/j.ygyno.2017.02.041 ◽

2017 ◽

Vol 145 (2) ◽

pp. 319-328 ◽

Cited By ~ 23

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

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Pilot Use of Selected Measures from the Patient-Reported Outcomes Measurement Information System Social and Mental Health Domains with Young Adult Cancer Patients During the Transition to Survivorship Care

Journal of Adolescent and Young Adult Oncology ◽

10.1089/jayao.2019.0022 ◽

2019 ◽

Vol 8 (5) ◽

pp. 635-639 ◽

Cited By ~ 2

Author(s):

Casey Walsh ◽

Yuri Jang ◽

Jennifer Currin-McCulloch ◽

Pamela Simon ◽

Catherine Cubbin ◽

...

Keyword(s):

Mental Health ◽

Information System ◽

Patient Reported Outcomes ◽

Measurement Information ◽

Survivorship Care ◽

Outcomes Measurement ◽

Patient Reported ◽

Health Domains ◽

Measurement Information System ◽

Young Adult Cancer

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

Journal of Clinical Oncology ◽

10.1200/jco.2011.36.8373 ◽

2011 ◽

Vol 29 (36) ◽

pp. 4755-4762 ◽

Cited By ~ 216

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.

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Associations between patient-reported outcomes and physiatry assessments in an integrative model of a survivorship clinic.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e14032 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e14032-e14032

Author(s):

Hira Latif ◽

Kristi D Graves ◽

Cristina Kline-Quiroz ◽

Patrick Martone ◽

Asma Ali Dilawari

Keyword(s):

Cancer Survivors ◽

Physical Functioning ◽

Patient Reported Outcomes ◽

Social Roles ◽

Walk Test ◽

Survivorship Care ◽

Timed Up And Go ◽

Patient Reported ◽

6 Minute Walk Test ◽

Minute Walk

e14032 Background: The Institute of Medicine and Commission on Cancer recommends delivery of comprehensive survivorship care to all cancer survivors. While models exist for high-quality survivorship care, institutions encounter barriers such as lack of resources and training in cancer survivorship. We introduce a shared-care model with physical medicine and rehab (PM&R) to provide comprehensive care to cancer survivors at MedStar Washington Hospital Center. Methods: We implemented a bimonthly survivorship clinic in September 2018, staffed by a medical oncologist, oncology fellow and a cancer rehabilitation fellow. We assessed patient reported outcomes through PROMIS short forms for physical functioning, companionship, satisfaction with social roles and depression. Physiatry assessments included the 6-minute walk test and the Timed Up and Go test. All patients received a treatment summary and survivorship care plan. Results: We evaluated 30 cancer survivors between Sept 2018 and December 2019; mean age was 55.6 years (SD = 10.6 years). Majority were female (60%) and Black (60%). Most patients were overweight or obese (93%) with a mean body mass index of 30.6 mg/m2 (SD = 4.7). Breast (43%) and hematologic malignancy (33%) were the most common cancer diagnoses. The median time between cancer remission and the clinic visit was 16 months (Range = 1 to 65 months). The average score for Timed Up and Go test was within the reference normal value of < 12 sec (8.22 seconds, n = 23). Average distance for the 6-minute walk test was 465.87 meters (n = 18). Survivor age was negatively correlated with the distance walked for the 6-min walk test (r = -0.51, p = 0.027). Better psychosocial functioning assessed with PROMIS were significantly associated with lower scores on the Timed Up and Go Test: satisfaction with social roles (r = -0.67, p = 0.033) and companionship (r = -0.64, p = 0.046); we identified a trend between Timed Up and Go scores and depression (r = 0.47, p = 0.099). Conclusions: An integrative survivorship clinic to provide multidisciplinary survivorship care is a feasible model and results suggest that patients’ physical functioning is significantly associated with psychosocial outcomes. Our approach highlights the importance of assessing both physical functioning and patient-reported outcomes. Future research can evaluate assessments of these outcomes over time.

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