Katherine Ramsey Gilmore

Bereaved Parents' Perspectives on Pediatric Palliative Care

This studys goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their childs death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.

Abstract 3464: Low concordance with CEA tumor marker monitoring in colorectal cancer survivors

Purpose: To assess providers’ concordance with surveillance and risk reduction recommendations for colorectal cancer (CRC) survivors after completion of their curative treatment. Patients and Methods: This was a longitudinal study of survivors who met the following eligibility criteria: diagnosed with a primary colon or rectal cancer before their first visit (V) to the CRC Survivorship Clinic, adult survivor ≥ 18 years old, no evidence of disease, alive at the time of data abstraction, and 1-3 clinic visits between 9/01/2011 and 8/31/2014. Data were collected at V1 scheduled between 9/1/2011 and 8/31/2012. V2 was scheduled 9-15 months after the first visit. V3 was also scheduled 9-15 months after V2. Data sources were survivorship care plans, electronic medical records, and CRC survivorship algorithms. For an annual visit, CRC algorithms recommended history/physical exams (H & PEs), carcinoembryonic antigen (CEA) testing when previously elevated, and colonoscopies for surveillance of cancer recurrence. Concordance rates (CR) were measured as the percent of yes/no responses to whether the providers followed minimum standards for the 3 procedures. Demographic and clinical characteristics were also collected. Descriptive statistics were used to summarize all data. Results: 81 of 117 CRC survivors who met all eligibility criteria were included in this sub-analysis. The number of survivors visits varied across time, V1 = 81, V2 = 56, and V3 = 36. Most survivors were male (51.9%) and Caucasian (66.7%). 67.9% reported being 5-8 years post-treatment. 58% were diagnosed with colon cancer and of those 61.7% were Stage IIIA-IV compared to 55.8% of rectal cancer survivors with advanced disease. Table 1 summarizes the percentage of CR rates across the 3 visits. Conclusion: CRs for H & PEs and colonoscopies remained high across the 3 visits. CRs were lowest for CEA recommendations. These low rates suggest further work is needed to determine barriers in clinical practice that limit use of CEA tumor marker monitoring in CRC survivors. Citation Format: Guadalupe Palos, Katherine R. Gilmore, Patricia Chapman, Paula Lewis-Patterson, Weiqi Bi, Maria Alma Rodriguez. Low concordance with CEA tumor marker monitoring in colorectal cancer survivors. [abstract]. In: Proceedings of the 107th Annual Meeting of the American Association for Cancer Research; 2016 Apr 16-20; New Orleans, LA. Philadelphia (PA): AACR; Cancer Res 2016;76(14 Suppl):Abstract nr 3464.

Changing Nursing Practice in Survivorship Care With Clinical Decision Tools

The paradigm shift to include survivorship care as part of the cancer care continuum underscores the critical need for a change in nursing practice. One way to ensure that change in practice is delivered in a safe and efficient manner is through the use of clinical decision tools (CDTs). Such tools can be used to increase relevant knowledge and skills of nurses and patients. Despite the widespread recognition of their value, CDTs to educate providers on cancer survivors’ care are limited and, when available, often are not used. Clinical practice algorithms were developed for disease-specific survivorship clinics in a cancer academic center. This article reviews the conceptual framework of the survivorship algorithms, describes the application of the algorithms in multidisciplinary disease-specific survivorship clinics, and discusses the implementation strategies used to promote clinicians’ adoption and implementation of the algorithms. At a Glance • The authors found that algorithms can be successfully used as clinical decision tools(CDTs) to deliver survivorship care. • Algorithms and other CDTs are powerful tools to enhance professional practice. • Additional studies are needed to assess their effect on clinical practice and survivor outcomes.

Application of a standard practice-based system to measure and compare quality of cancer survivorship care.

239 Background: Despite the growing committment to improve survivorship care, measuring its quality remains difficult. In 2006, the American Society of Clinical Oncologists (ASCO) launched a practice-based system known as the Quality Oncology Practice Initiative (QOPI) to measure the quality of cancer care. Here, we demonstrate the use of QOPI procedures to compare compliance with survivorship care plans (SCPs) across different disease-specific clinics. METHODS Measures based on survivorship clinical practice guidelines were abstracted from SCPs issued to survivors scheduled for appointments in site-specific clinics. Following QOPI procedures, we identified the target condition as cancer, selected data collection methods, and determined core measures for abstraction. Procedures included; identifying the number of survivors arriving for appointments within the specified time period, standardizing denominators and numerators used per clinic, determining the number of full-time providers per clinic, and calculating the number of records to audit per clinic. All data were obtained from completed care plans, institutional electronic medical records, and scheduling systems. Descriptive statistics were used to conduct aggregate analyses of de-identified data. The same procedures were followed in each clinic. RESULTS From September 1, 2014, to August 31, 2015, we used a standard process to assess compliance for issuing survivorship care plans across 9 clinics. There were a total of 8864 arrived appointments; 46 providers completed a total of 7448 electronic survivorship care plans over the time period. Analysis of compliance rates indicated broad variation across clinics, including: breast (85.3%), gastrointestinal (80.2%), genitourinary (88.5%), gynecology (78.6%), head/neck (96.8%), lymphoma (99.3%), melanoma (62.2%), thyroid (75.4%) and thoracic (63.3%). CONCLUSIONS Establishing uniform procedures, such as the QOPI process, to measure and compare compliance with SCPs will help achieve high quality standards of care for long-term cancer survivors. Further examination is warranted to determine longitudinal trends and factors contributing to variation in compliance rates.

Abstract P3-08-15: Improving survivors’ quality of care through use of self-reported satisfaction data

Background: Despite numerous initiatives to improve the quality and safety of care for the growing number of cancer survivors, little empirical evidence is available about survivor satisfaction with post-treatment care or whether their information needs are met. Our specific aim was to conduct a comparative evaluation of 2 cohorts of survivors to determine their satisfaction with services provided in a breast survivorship clinic. Methods: We compared satisfaction in 2 separate cohorts of women who completed their curative treatment. Eligibility criteria for both groups included being a woman diagnosed with breast cancer and transitioned to “long-term survivor” status by their primary oncologist. Women were then grouped into no-visit, those who had never been to a breast survivorship clinic or completed-visit, survivors who had completed a visit to the survivorship clinic. Data was collected for the no-visit group in 2009, when the breast survivorship clinic was initially launched. Data collection for the comparative or completed-visit cohort is ongoing. The instrument consisted of 6 items reflecting 2 subscales: satisfaction and information needs. The first subscale focused on satisfaction with their visit, time spent with provider, and management of emotional distress. The second sub-scale focused on information received related to disease surveillance, late effects, health promotion, and social services. Survivors in both groups received the questionnaire upon their clinic arrival and completed it during their visit. Descriptive statistics were used to summarize all responses. All data were de-identified. Results: The no-visit cohort consisted of 81 breast cancer survivors who had never been seen in any type of survivorship clinic. Responses indicating that the survivors strongly agreed with an item were reported as follows: 79.5% satisfied with their visit, 77.3% information received, and 77.8% adequate time with provider. Of survivors who reported they were experiencing emotional distress, 50% strongly agreed that the clinicians in the clinic did all possible to address their distress, such as making referrals to the clinic social worker or to community-based mental health services. Bone health, cancer education, recurrence, and screening were the educational topics most requested. Final data collection and analysis for the comparative cohort, completed-visit, will be concluded by August 2013. Discussion: The no-visit cohort reported high satisfaction with survivorship care and information before they were seen in any type of institutional survivorship clinic. This finding could be a bias resulting from satisfaction with care received as a patient in active treatment. Results however, also suggest survivors of breast cancer who had not been seen in a survivorship clinic were aware of the type of specialized care or education needed to maintain their health after curative treatment. Further evaluation and research is needed to determine how satisfaction and unmet educational needs can be used to optimize outcomes for our growing population of cancer survivors. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-08-15.

Prevalence and trajectory of disease- and treatment-related symptom burden in patients with multiple myeloma undergoing induction therapy.

e19627 Background: Patients with multiple myeloma (MM) undergoing induction therapy experience both disease- and therapy-related symptoms. This study selectively focused on the trajectory of pain, fatigue, numbness and bone aches from patient-reported outcome. METHODS MM patients (N=62) repeatedly rated symptoms via the M. D. Anderson Symptom Inventory (MDASI) (twice a week for 12 weeks, then weekly for 6 weeks). Ordinal regression analysis was used to describe symptom trajectories across time. Group-based trajectory modeling was used 1) to estimate the proportion of MM patients belonging to high, medium or low group by symptom severity; and 2) to examine the patterns of each group derived for each symptom. RESULTS During induction period, fatigue was persistently the most severe symptom, while therapy-induced neuropathy (MDASI numbness item) increased significantly from baseline (P=.0008). Group-based trajectory modeling resulted in 3 groups as the best model fit for 4 symptoms. The proportions of patients categorized as having high, medium or low symptom severity, respectively, were: for pain, 27%, 41% and 32%; for bone ache, 22%, 43% and 35%; for numbness, 22%, 48% and 30%; for fatigue, 28%, 58% and 14%. For pain, we observed a significant linear increased trend in the medium group (P<.001). For fatigue, bone ache and numbness, the medium and low groups exhibited only a slight change in slope, while the high symptom group showed a significant initial increase followed by a decrease trend (all quadratic trends, P<.001). Other than baseline performance status (P<.01), no clinical or patient factor was related to group membership. CONCLUSIONS The majority of patients reported moderate or greater fatigue, pain and bone aches throughout the induction treatment, with little evidence of reduction, while numbness/tingling dramatically increased over time. We also observed that some MM patients persistently reported low symptom burden compared to others, despite similar disease burden and therapy. These results warrant further translational studies to identify biomarker(s) related to high symptom burden, so as to guide personalized patient care during standard induction therapy.