Patient-reported priorities for survivorship care and experience discussing available services.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 200-200
Author(s):  
Julia Rabin ◽  
Katharine Quain ◽  
Nora Horick ◽  
Garrett Chinn ◽  
Allison McDonough ◽  
...  
Keyword(s):  
Supportive Care ◽  
Early Stage ◽  
Female Gender ◽  
Cancer Center ◽  
Survivorship Care ◽  
Response Options ◽  
Cancer Symptoms ◽  
Factors Associated ◽  
Care Services ◽  
Patient Reported

200 Background: Despite the recognized need for high quality survivorship care, barriers to identifying and addressing patients’ needs still remain. We sought to evaluate cancer survivor care priorities, awareness of available services, and factors associated with care and informational needs. Methods: A needs assessment survey was distributed to patients presenting for routine follow-up care in adult oncology clinics at the MGH Cancer Center between February and August of 2016. The survey assessed sociodemographic characteristics, and preferences for care and communication. Care priorities were selected from a list of options including open ended response. Discussion of supportive care services was assessed by the item “have any of your providers informed you about the types of supportive care services that are available to cancer patients" with response options of “yes,” “no” or “don’t know.” Results: Among 637 total respondents, 339 patients with early stage cancer completed the survey. The majority of participants were between 50-69 years old (54%), white (89%), female (64%), and college educated (80%). Breast (32%) and hematological malignancies (21%) were the most prevalent diagnoses. Commonly endorsed priorities for care included: emotional concerns related to cancer (40%), strategies to increase self-care (33%), and management of physical cancer symptoms (30%). Demographic and clinical factors associated with endorsing emotional concerns as a care priority included female gender, and moderate or greater levels of fatigue, depression, or anxiety (all p< 0.01). Factors associated with endorsing management of physical cancer symptoms as a care priority included younger age, and moderate or greater levels of fatigue or depression (all p≤0.01). Despite these priorities for care, only 41% of patients reported receiving information from providers about available supportive care services. Conclusions: Cancer survivors’ preferences for emotional support and symptom management are strongly associated with self-reported depression and fatigue. Routine screening for these issues and improvement in communication regarding available services should be prioritized in survivorship care.

Distress screening through PROMIS at an academic cancer center and network site: Implementation of a hybrid model.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 2021-2021
Author(s):  
Mohana Roy ◽  
Joel W. Neal ◽  
Kelly Bugos ◽  
Christopher Sharp ◽  
Patricia Falconer ◽  
...  
Keyword(s):  
Supportive Care ◽  
Screening Tool ◽  
Cancer Center ◽  
Patient Portal ◽  
Supportive Services ◽  
Distress Screening ◽  
Positive Screen ◽  
Network Site ◽  
Care Services ◽  
Patient Reported

2021 Background: The NCCN guidelines recommend routine distress screening of patients with cancer, but the implementation of such programs is inconsistent. Up to one in three such patients experience distress, however fewer than half of them are identified and referred for supportive services. Methods: We implemented a hybrid (electronic and paper) distress screening tool, using a modified version of the PROMIS-Global Health questionnaire. Patients received either an electronic or in-clinic paper questionnaire to assess overall health and distress at the Stanford Cancer Center and its associated integrated network site. Iterative changes were made including integration with the electronic health record (EHR) to trigger questionnaires for appointments every 60 days. A consensus “positive screen” threshold was defined, with data collected on responses and subsequent referrals placed to a supportive care services platform. Results: Between June 2015 and December 2017, 53,954 unique questionnaires representing 12,744 distinct patients were collected, with an average completion rate of 58%. Approximately 30% of the questionnaires were completed prior to the visit electronically through a patient portal. The number of patients meeting the positive screen threshold remained ~ 40% throughout this period. Following assessment by the clinical team, there were 3763 referrals to cancer supportive services. Among the six most common referral categories, those with a positive screen were more likely to have a referral placed (OR 6.4, 95% CI 5.8-6.9 p- < 0.0001), with a sensitivity of 80% and a specificity of 61%. However, 89% of responses with a positive screen did not have a referral to supportive care services. Conclusions: The hybrid electronic and paper use of a commonly available patient reported outcome tool, as a high throughput distress screening tool, is feasible at a multi-site academic cancer center. Our positive screen rate for referrals was sensitive and consistent, but with a low positive predictive value. This screening also resulted in variable clinical response and overall increased clinical burden. Future directions for our group have included refining the threshold for a positive screen and implementation of a real-time response system, especially to address acute concerns.

scholarly journals Enhancing Patient-Provider Communication With the Electronic Self-Report Assessment for Cancer: A Randomized Trial

2011 ◽  
Vol 29 (8) ◽  
pp. 1029-1035 ◽  
Author(s):  
Donna L. Berry ◽  
Brent A. Blumenstein ◽  
Barbara Halpenny ◽  
Seth Wolpin ◽  
Jesse R. Fann ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Clinic Visit ◽  
Self Report ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Control Group ◽  
Cancer Symptoms ◽  
Patient Reported ◽  
Life Issues ◽  
Clinic Visits

Purpose Although patient-reported cancer symptoms and quality-of-life issues (SQLIs) have been promoted as essential to a comprehensive assessment, efficient and efficacious methods have not been widely tested in clinical settings. The purpose of this trial was to determine the effect of the Electronic Self-Report Assessment–Cancer (ESRA-C) on the likelihood of SQLIs discussed between clinicians and patients with cancer in ambulatory clinic visits. Secondary objectives included comparison of visit duration between groups and usefulness of the ESRA-C as reported by clinicians. Patients and Methods This randomized controlled trial was conducted in 660 patients with various cancer diagnoses and stages at two institutions of a comprehensive cancer center. Patient-reported SQLIs were automatically displayed on a graphical summary and provided to the clinical team before an on-treatment visit (n = 327); in the control group, no summary was provided (n = 333). SQLIs were scored for level of severity or distress. One on-treatment clinic visit was audio recorded for each participant and then scored for discussion of each SQLI. We hypothesized that problematic SQLIs would be discussed more often when the intervention was delivered to the clinicians. Results The likelihood of SQLIs being discussed differed by randomized group and depended on whether an SQLI was first reported as problematic (P = .032). Clinic visits were similar with regard to duration between groups, and clinicians reported the summary as useful. Conclusion The ESRA-C is the first electronic self-report application to increase discussion of SQLIs in a US randomized clinical trial.

Patient reported sexual concerns in routine cancer care.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 12128-12128
Author(s):  
Brittany Lees ◽  
Smitha Vilasagar ◽  
Jubilee Brown ◽  
Peter E Clark ◽  
Maxim McKibben ◽  
...  
Keyword(s):  
Sexual Health ◽  
Cancer Care ◽  
Unmet Need ◽  
Well Being ◽  
Cancer Site ◽  
Cancer Center ◽  
Cancer Symptoms ◽  
Health Concerns ◽  
Patient Reported ◽  
Sexual Concerns

12128 Background: Sexual health is an important component of overall well-being and can be adversely impacted by chemotherapy, surgery, radiation, in addition to the psychological effects of cancer treatments. Sexual health is challenging to discuss and may be overlooked or avoided during cancer care. Methods: Patients presenting for consultation in an outpatient multisite cancer center completed electronic distress screening (EDS) between January 2017 and December 2020. The EDS contains 42 questions; demographic information, cancer symptoms and side effects, and psychosocial factors. The EDS is completed by patients before a clinical encounter for early symptom identification and intervention. We conducted a retrospective data analysis of sexual health concerns (>5; scale 0-10) and evaluated patient characteristics and clinically relevant distress (>4; NCCN Distress Tool), depression risk (>3; PhQ2), and anxiety risk (>3; GAD2). Our primary aim was to identify the prevalence of sexual health concerns. The secondary aim was to examine the relationship between sexual health and emotional well-being. Results: 57,375 EDS screens were completed. 13,950 patients (24%) reported sexual concerns or lack of interest in sex (>5) within the last 2 weeks. The frequency of these concerns at specific clinics ranged from 12% to 48%, with the highest rates at Palliative care (39%) and Psycho-Oncology (48%) clinics. Genitourinary (30%), Gynecologic (27%) and Gastroenterology (26%) reported the highest frequency of sexual concerns from cancer site specific clinics. Males reported a higher rate of sexual problems compared to females (30% vs 21%, p < 0.001), but a lower rate of relationship concern distress (12% vs 13%, p < 0.05). Patients with a risk for depression (n = 9,126) or anxiety (n = 10,809) had higher rates of self-reported sexual concerns than those with a negative screen (44% vs 21% depression, p < 0.001; 40% vs 21% anxiety, p < 0.001). Conclusions: Sexual health is a concern for approximately one-quarter of patients presenting for cancer care. Sexual health concerns were prevalent across cancer sites. Patients with positive screens for anxiety and/or depression have nearly double the rates of reported sexual health concerns. Sexual health is a current unmet need that impacts cancer patients and warrants attention.

Comparison of prognostic factors and survival outcome between gastrointestinal tract and cutaneous invasive malignant melanoma.

2012 ◽  
Vol 30 (4_suppl) ◽  
pp. 618-618
Author(s):  
Chi Lin ◽  
Christopher K Brown ◽  
Charles Arthur Enke ◽  
Fausto R. Loberiza
Keyword(s):  
Prognostic Factors ◽  
Proportional Hazards ◽  
Early Stage ◽  
Female Gender ◽  
Cox Proportional Hazards ◽  
Lymph Node Status ◽  
Cancer Specific Survival ◽  
White Race ◽  
Factors Associated ◽  
Cox Analysis

618 Background: Gastrointestinal melanoma (GIM) is a rare disease. The objective of this study is to compare the overall survival (OS), cancer specific survival (CSS) and prognostic factors of GIM to those of skin melanoma (SKM) using the Surveillance, Epidemiology, and End Results (SEER) registry. Methods: Patients diagnosed with invasive GIM (406) and SKM (173,622) between 1973 and 2008 were identified from the SEER database. Factors analyzed included age (18-40/41-60/61-100), gender, race (White/nonwhite), marital status, stage (localized/regional/distant), year of diagnosis (1973-87/1988-97/1998-2008), and type of treatment (radiotherapy (RT)/surgery). OS and CSS were evaluated using the Kaplan-Meier method. Cox proportional hazards regression analysis examined what factors were prognostic of survival. Results: The median age was 69 and 57 for patients with GIM and SKM, respectively. The GIM group was older with more advanced-stage cancer than the SKM group. Surgery was performed on 85% and 95%, while RT was received by 18% and 2% of GIM and SKM patients, respectively. The GIM group had a median OS and CSS of 15 and 16 months, respectively, while the SKM group had a median OS of 283 months and did not reach a median CSS. Cox analysis showed that SKM had significantly lower risk of total and cancer-specific mortality compared to GIM (Hazard Ratio (HR) 0.40, p<0.0001) and (HR 0.34, p<0.0001). Factors associated with improved OS and CSS in SKM included: age ≤60, female gender, non-white race, early stage, being married, more recent diagnosis, undergoing surgery and not receiving RT. Factors associated with improved OS and CSS in GIM included: age ≤60, early stage, non-white race and undergoing surgery. Subgroup analysis on patients who underwent surgery showed that lymph node status was the only prognostic factor for GIM, while all of the previously identified prognostic factors except for race were associated with OS and CSS for SKM. Conclusions: Outcomes of patients with GIM are inferior to those with SKM. The melanomas in these two sites also have different prognostic factors. Future studies should explore the reasons behind these differences to improve treatment outcomes.

The availability versus accessibility gap in supportive care services at 40 NCI-designated cancer centers.

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 283-283 ◽  
Author(s):  
Kathryn Hutchins ◽  
Geoffrey Hamlyn ◽  
Abby Johnston ◽  
Rishonda Thomas ◽  
James Tian ◽  
...  
Keyword(s):  
Supportive Care ◽  
Cancer Education ◽  
Private Insurance ◽  
Quantitative Measure ◽  
Complete Information ◽  
Cancer Center ◽  
Team Approach ◽  
Supportive Services ◽  
Cancer Centers ◽  
Care Services

283 Background: Many cancer centers have developed and fostered several supportive care services to ease the stress of a cancer diagnosis. The availability of such services is key to Commission on Cancer (CoC) for accreditation, which many cancer centers pursue and patients seek as a measure of quality. Despite the stated availability of supportive care services, we wondered how easily new patients could access these services when first contacting a major cancer center. Methods: We used a ‘mystery shopper’ format to simulate calls made by a family member of a recently diagnosed patient to 40 NCI-designated cancer centers. We called each center four times on different days, twice with the caller reporting Medicaid insurance, twice with private insurance. We evaluated quantitative and qualitative components of the call, including time to next available appointment and reported availability of the 7 supportive services reported to the CoC. Descriptive statistics were calculated for each quantitative measure. Results: We placed 160 calls to 40 NCI-designated cancer centers. 38.2% of callers were unable to receive complete information about the number of supportive care services offered, whether because they were unable to reach a person or because the person they reached did not know whether one or more of the services was offered. Overall, only 37.6% of callers (60.8% of those who reached a person who could answer their questions) were told that all seven supportive care services were offered. Call recipients responded with an answer other than yes to whether the cancer center offered a multidisciplinary team approach (14.6%), patient navigation services (12.1%), genetic assessment/counseling (9.5%), palliative care (9.5%), counseling/psychological services (7.6%), or cancer education services (6.4%). Conclusions: Despite the stated availability of seven key supportive care services, we were unable to access all services during a call to establish an appointment about one-third of the time. For individual services, about 10% of the time we were told such services did not exist at the cancer center. Further research is needed to close the availability vs. accessibility gap in oncology supportive care.

Understanding the supportive care needs of early-phase cancer clinical trial (CT) participants.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 26-26
Author(s):  
Debra Lundquist ◽  
Dejan Juric ◽  
Rachel Jimenez ◽  
Virginia Capasso ◽  
Casandra McIntyre ◽  
...  
Keyword(s):  
Supportive Care ◽  
Early Phase ◽  
Poor Prognosis ◽  
Phase 1 ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Targeted Interventions ◽  
Care Services ◽  
Patient Reported ◽  
Prognosis Score

26 Background: Early phase CTs investigate novel therapeutic approaches for patients with cancer, but little is known about the use of supportive care services among participants in early phase CTs. Methods: We conducted a retrospective chart review of consecutive patients enrolled in Phase 1 CTs from 2017-2019, capturing sociodemographics, clinical data, and use of supportive care services from the electronic health record. We calculated the Royal Marsden Hospital (RMH) prognostic score using data at the time of CT trial enrollment based on patients’ lactate dehydrogenase, albumin, and number of sites of metastasis. The RMH score ranges from 0-3, with scores of 2+ indicating a poor prognosis. We explored differences in patient characteristics, supportive care use, and clinical outcomes based on the RMH prognosis score. Results: Among 426 patients treated on Phase 1 CTs during the study period, the median age was 63.0 years (range 20.5-85.2 years), and most were female (56.1%), white race (85.1%), and had metastatic cancer (97.7%). The most common cancer types were gastrointestinal (22.1%), lung (20.0%), and breast (10.6%) cancer. Under half (31.6%) had an RMH score indicating a poor prognosis. Patients with a poor prognosis score had a worse performance status (ECOG ≥1: 80.2% v 58.3%, p < .001) and more prior treatment (3+ prior lines: 49.5% v 35.0%, p = .001) compared to those without a poor prognosis score. Those with a poor prognosis score were more likely to receive palliative care before or during CT participation (40.5% v 27.1%, p = .011). We observed no significant differences in the rates of nutrition (69.1% v 64.0%), social work (62.2% v 63.8%), or physical therapy (64.5% v 61.7%) consults between those with and without a poor prognosis score. We found that those with an RMH score indicating a poor prognosis had a shorter time on trial (median: 49 vs 87 days, p < .001) and worse survival (median: 139 v 379 days, p < .001). Conclusions: Early phase CT participants represent an advanced cancer population with unique supportive care needs, and we identified a group with a particularly poor prognosis for whom earlier intervention with supportive care services may be needed. Our findings highlight the need to prospectively examine these characteristics along with patient-reported outcomes to better understand the distinct supportive care needs of this population and guide the development of targeted interventions.

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.

scholarly journals Complications to 6 months following total hip or knee arthroplasty: Observations from an Australian clinical outcomes registry

2020 ◽  
Author(s):  
Sung Mu Heo ◽  
Ian Harris ◽  
Justine Naylor ◽  
Adriane Lewin
Keyword(s):  
Knee Arthroplasty ◽  
Joint Stiffness ◽  
Female Gender ◽  
Complication Rates ◽  
Patient Factors ◽  
Factors Associated ◽  
Total Hip ◽  
Operative Care ◽  
Increased Risk ◽  
Patient Reported

Abstract Background: Total hip and total knee arthroplasty (THA/TKA) are increasing in incidence annually. While these procedures are effective in improving pain and function, there is a risk of complications. Methods: Using data from an arthroplasty registry, we described complication rates including reasons for reoperation and readmission from the acute period to six months following THA and TKA in an Australian context. Data collection at 6 months was conducted via telephone interview, and included patient-reported complications such as joint stiffness, swelling and paraesthesia. We used logistic regression to identify risk factors for complications. Results: In the 8,444 procedures included for analysis, major complications were reported by 9.5% and 14.4% of THA and TKA patients, respectively, whilst minor complications were reported by 34.0% and 46.6% of THA and TKA patients, respectively. Overall complications rates were 39.7% and 53.6% for THA and TKA patients, respectively. In THA patients, factors associated with increased risk for complications included increased BMI, previous THA and bilateral surgery, whereas in TKA patient factors were heart disease, neurological disease, and pre-operative back pain and arthritis in a separate joint. Female gender and previous TKA were identified as protective factors for minor complications in TKA patients.Conclusion: We found moderate rates of major and high rates of minor postoperative complications following THA and TKA in Australia and have identified several patient factors associated with these complications. Efforts should be focused on identifying patients with higher risk and optimising pre- and post-operative care to reduce the rates of these complications.

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