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

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]

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.

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.

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.

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.

Variations in recommended surveillance in colorectal cancer survivorship care plans.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 13-13
Author(s):  
Alaina Chodoff ◽  
Katherine Clegg Smith ◽  
Aishwarya Shukla ◽  
Amanda L. Blackford ◽  
Nita Ahuja ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Cancer Risk ◽  
Controlled Trial ◽  
Center Frequency ◽  
Cancer Center ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Follow Up Care

13 Background: Survivorship care plans (SCPs) outline pertinent information about a cancer survivor’s treatment and follow-up care. We describe the content of colorectal cancer (CRC) SCPs, completed as part of a randomized controlled trial of SCPs, and evaluate whether follow-up recommendations are guideline concordant. Methods: We analyzed 74 CRC SCPs from an academic and community cancer center. Frequency distributions and descriptive statistics were calculated for the entire cohort and separately by recruiting site. Follow-up recommendations were compared to American Cancer Society (ACS), American Society of Clinical Oncology (ASCO) and National Comprehensive Cancer Network (NCCN) guidelines (Table). Results: Content routinely provided in SCPs (>80%) included patient demographics, cancer diagnosis, treatment details (surgery, chemotherapy, radiation therapy) as well as treatment-related side effects. SCP content specified less frequently included cancer stage, cancer risk (predisposing conditions), and recommendations for genetic counseling/testing and health promotion. Nearly all SCPs from the community site provided uniform, guideline-concordant follow-up. At the academic site, on average, more than 15 follow-up recommendations were listed for each surveillance modality, except colonoscopy. Among the SCPs that specified the frequency of follow-up care, the rate of guideline-concordant recommendations was 15/42 (36%) for follow-up visits, 29/43 (67%) for imaging, 12/45 (27%) for laboratory and 39/39 (100%) for colonoscopy. Conclusions: SCPs consistently provided information about CRC diagnosis and treatment, but often omitted information about cancer risk, staging and prognosis. There was considerable variation between cancer centers in the follow-up recommendations suggested for CRC survivors. Future work to improve the consistency of SCP follow-up recommendations with guidelines may be needed. Clinical trial information: NCT03035773 . [Table: see text]

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