bluuebunny/crossref_metadata_2025_split huggingface dataset:
From community to validated measure: Development and validation of the patient-informed cancer communication scale (PICCS).
Authors: Hamel Lauren M. , Soulliere Roger , Baidoun Fatmeh , Foster Tanina , Heath Elisabeth I. , Eggly Susan 
Published: September 2021

159 Background: Assessing patient-centered communication (PCC) is critical to improving quality patient-centered cancer care. While shown to be reliable and valid, most PCC measures were created by researchers, likely neglecting concerns of patients, families, and community members. PCC measures should be driven, in part, by the patient population of interest, especially given disparities in clinical communication. Our objective was to develop and validate a patient-informed PCC scale to assess cancer treatment discussions. Methods: As part of a larger study on communication and minority accrual to trials, we convened a panel of black and white cancer survivors, caregivers, and advocates. Panel members (n = 11) included 5 black and 3 white men and 1 black and 2 white women. Among them were 6 survivors and 5 caregivers. Panel members met regularly over six months to observe and discuss video-recorded treatment discussions between black and white men with prostate cancer and their physicians. Through an iterative process of generating and refining a list of physician communication behaviors they considered to be critical to PCC in a diverse patient population, they produced a list of 22 items, titled Patient-Informed Cancer Communication Scale (PICCS). We then applied the list as an observational scale to a set of video-recorded treatment discussions (n = 61) from the larger study. Trained raters applied the list and had acceptable inter-rater reliability. We used findings to determine constructs using scale development and factor analysis, then validated the scale through correlation with established scales. Results: We evaluated each item for content validity and feasibility. We divided some items that were assessing multiple attributes. The result was a 28-item scale. Using Classical Test Theory, we reduced the scale to 22 items. Using factor analysis, we identified five factors, including: 1. Treatment options (10 items a =.92); 2. Clinical relationship (6-items a =.92); 3. Prognosis and goals of treatment (2-items a =.79); 4. Explanations (2-items a =.43); and 5. Context (1-item). To validate, we correlated factors with two validated scales, one measuring physician PCC and the other patient active participation. Factor 1 was positively correlated with patient active participation ( r=.46; p=.003); Factor 2 with PCC ( r=.54, p. <.001); Factor 3 with patient active participation ( r=.48; p=.002); and Factor 5 with PCC ( r=.47, p=.002). The full PICCS scale was positively correlated with patient active participation ( r=.37, p=.02). PICCS Factor 4 was not correlated to the scales. Conclusions: This community-engaged research produced a reliable and valid patient-informed scale to assess PCC during cancer clinical interactions. Next steps include translating the findings by using PICCS to train physicians to communicate effectively in a diverse patient population.
“I think that she would have wanted...”: Caregiver reflections on goal-concordant care for patients with cancer at the end of life.
Authors: Durieux Brigitte N. , Berrier Anna , Catzen Hannah Z. , Gray Tamryn , Tulsky James A. , Sanders Justin J. 
Published: September 2021

163 Background: Experts recognize goal-concordant care (GCC) as among the most important outcomes for those with advanced cancer. Despite a conceptual understanding about ways to measure goal-concordant care, we know little about what patient experiences align perceptions of goal concordance. Caregivers’ close proximity to patients give them a unique perspective on what factors contribute to perceived goal concordance. Methods: We conducted semi-structured interviews with 19 recently bereaved family caregivers of those with cancer to understand their experience of care, the extent to which they felt it was goal-concordant, and the factors of care which contextualized their experience. Caregivers were interviewed using a semi-structured guide based on the end-of-life planning module in Round 2 of the National Health and Aging Trends Survey (NHATS). We used template analysis to identify themes across the 19 interviews. Results: Most caregivers reported goal-concordant care when prompted, though many also recalled moments of goal discordance. Three high-level themes characterized their care perceptions: communication, relationships and humanistic care, and care transitions. Sub-themes of communication included clinician communication quality, prognostic communication, and information gaps. First, clear and transparent clinician communication facilitated GCC and high-quality care. Prognostic communication that did not align to patient preferences or consider patient hope was seen as harmful. Information gaps inhibited high-quality care as well as caregivers’ confidence that decisions were goal concordant. Second, relationships between patients and their clinicians enriched care, and humanistic care was seen as higher-quality. Lastly, logistical barriers, the need for relationship rebuilding, uncertain information communication, and a general lack of coordination characterized perceptions around care transitions and goal discordance. In particular, several caregivers noted issues and inter-specialty tensions around transitions specifically involving hospice. Conclusions: Caregivers consistently rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Measures that capture goal-concordant care may be subject to psychological bias and may not clearly align with or predict other measures of care quality. Communication, relationships and humanistic care, and care transitions are all modifiable targets for quality improvement and deserve clear attention for patients with advanced cancer.
Documentation of goals of care discussions: Lessons from the Improving Goal Concordant Care Collaborative.
Authors: McNiff Landrum Kristen K. , Reddy Akhila Sunkepally , Ross Tom , Kolosky Jack ,   IGCC Collaborators
Published: September 2021

166 Background: Patients with advanced cancer do not reliably receive care consistent with their goals and values. Goal-concordant care requires effective, efficient and timely communications between patients and their providers, as well as systems to capture patient goals and ensure future accessibility. Currently, electronic health records (EHR) in most oncology settings do not adequately support structured documentation that is most relevant to goals of cancer care. Methods: The Alliance of Dedicated Cancer Centers (ADCC) initiated the Improving Goal Concordant Care (IGCC) Initiative in 2019. ADCC members are 10 U.S. freestanding, academic cancer hospitals, which are also the IGCC participants. In 2019 and 2020, we convened palliative care and oncology experts in the IGCC’s planning phase, via a series of structured consensus building sessions. We employed modified Delphi processes - including literature review, brainstorming, voting, and refinement - in conceptualization four core components considered essential to improving goal concordant care for cancer patients. One of these core components is EHR documentation of GOC discussions; an additional EHR workgroup created detailed recommendations. The three-year IGCC implementation phase launched in September 2020. Results: We achieved consensus on minimum desired fields for GOC documentation: intent of the current treatment, physician's estimated prognosis, prognosis disclosed/discussed with patient, patient prognostic awareness, patient goals, recommendations. Further, GOC documentation must be discrete and structured whenever possible to ease entry and facilitate retrieval/reporting. As GOC discussions evolve over time, documentation may be iterated over multiple encounters. GOC documentation is distinct from, but may rely on, advance directives or other ACP documentation, such as code status, POLST/MOLST, and healthcare agents. At IGCC collaborative launch, none of the 10 cancer hospitals had EHRs that were fully compliant. Progress toward development, training, and use of structured GOC documentation is ongoing. Conclusions: Establishing feasible and useful expectations for electronic documentation of GOC discussions by oncologists presented unique challenges for the IGCC. Ongoing and planned work in this area includes: Facilitating collaborative learning and promoting sharing of best practices; Measuring the presence of GOC documentation among priority patients, as well as other measures including patient and family reported outcomes; Assessing quality of the GOC documentation; Ongoing engagement of patient and family advisors, including regarding patient access to records containing GOC documentation; Potential application of natural language processing/artificial intelligence in prompting GOC documentation and facilitating retrieval.
Potential barriers to lung cancer screening in a minority population: Assessing attitudes, beliefs, and values towards screening with low-dose computed tomography amongst a high-risk minority population.
Authors: Sheppard Richard Stephen , Beale Stefani , Joseph Janet , Achi Sai Santhoshini , Showunmi Abosede , Ayinla Raji , Ahluwalia Meena 
Published: September 2021

17 Background: While the National Lung Screening Trial (NLST) has shown a relative reduction in mortality from lung cancer with the application of the United States Preventative Services Task Force (USPSTF) guidelines for the use of Low-Dose Computed Tomography (LDCT) in a select high risk population, many studies have shown that the rate of screening has been below the national average in minority population. Furthermore, lung cancer mortality still appears to be disproportionately higher amongst minority populations. With this study, we aim to evaluate the attitudes, beliefs and values towards lung cancer screening with LDCT in a predominantly Black and Hispanic population in our outpatient clinic. Methods: A survey was conducted over a 3-month period in our outpatient department at an urban inner-city safety net hospital. We included high risk smokers, aged 50 to 80 years who reported no evidence of symptoms. The survey consisted of 20 questions; these included utilizing the Health Belief Model to assess beliefs on perceived susceptibility, severity, benefits and barriers to screening, questions exploring fears of cancer screening and questions assessing overall willingness to undergo lung cancer screening with LDCT. We also included a question on the willingness of participants to engage in educational sessions with regards to lung cancer screening and risk reduction. Results were collected and analyzed via univariate logistic regression model to compare patient populations. Results: 67 patients participated in our survey. 62% were Black, 34% were Hispanic and 4% were Asian/Pacific Islanders. The mean age of our population was 64.5 years and they had an average of 27.2 pack-years of smoking. Issues related to insurance coverage and co-pay were identified as the most significant concern with regards to the unwillingness to undergo screening (p < 0.05). Other concerns identified were the fear of a positive screening result, fear of radiation exposure and lack of understanding of the association with smoking history and lung cancer (p = 0.12). All participants responded yes to being open to be educated on reducing their risk of lung cancer (p < 0.05). Conclusions: While many factors still exist with regards to lung cancer screening in minority populations, the cost of medical care, fear of radiation exposure and anxiety were identified as potential barriers to willingness to screen. Structured educational programs were identified as a possible measure that can be implemented to address these factors, with the potential to increase the willingness to undergo screening in a high risk minority population.
Potential surrogates for performance status and survival in metastatic non-small cell lung cancer (NSCLC).
Authors: Akerley Wallace L. , Puri Sonam , Jo Yeonjung , Coletta Adriana M , Kerrigan Kathleen Claire , Patel Shiven B. , Moynahan Kelly , Cannon Laura , Gumbleton Matthew , Hillman Nicole , Embrey Kelsey , Haaland Benjamin 
Published: September 2021

170 Background: Performance status (PS), a physician-based, subjective assessment of a patient’s symptoms and ambulatory state, is an eligibility criterion for most clinical trials and a key clinical decision tool for treatment of NSCLC. Methods: Patients with metastatic NSCLC were asked to participate in a prospective, observational study of potential prognostic factors that includes demographics, laboratory, patient reported outcomes (PROs) by the patient reported outcomes measurement information system (PROMIS), PS reported by patient, PS assessed by physician, FitBit tracker (includes steps, distance, heart rate (HR), calories, METs), physical challenge and proteomics (Veristratâ). Correlation and regression analyses were performed for the initial 55 patients enrolled prior to COVID restrictions. Tracker data was collected and averaged over the first 7 days with wear > 500 minutes/day. Other data were collected at baseline. Results: We enrolled 55 patients with metastatic NSCLC. There were 35 females and 20 males with a median age of 67 years. A majority of patients were never (38%, n = 21) or former smokers (40%, n = 22); adenocarcinoma (83%, n = 83%) was the most common histology. 30% (n = 17) patients were 2nd or greater line of therapy. 52 were included for survival analysis and 21 expired with median survival 226 days (149, NA). There were minimal gender related differences in the study population except a higher incidence of adenocarcinoma in women (94% vs 65%, p = 0.012 and longer FiTBit assessed daily “very active minutes” (defined as METs > = 6) in men compared to women (4.21 vs 0.43, p = 0.036). Patient- and physician assessed PS were not statistically different, although patients tended underestimated their PS relative to physicians. Physician assessed PS, patient assessed PS, two-minute walk distance, proteomics by Veristratâ, total daily steps, total daily distance covered, and heart rate/activity mismatch were independent predictors of survival. Age, gender, smoking, BMI, histology, and various CBC-based indices were not prognostic. Conclusions: Patient- and physician-assessment of PS do not always match, many alternate measures to PS are prognostic of survival and tracker-based methods are objective and feasible in clinical practice.
Development of PRO-PMs assessing symptoms following completion of curative-intent chemotherapy.
Authors: Chenok Katherine Eresian , Ye Feifei , McNiff Landrum Kristen K. , Hoo Emma , Kong Valerie , Griggs Jennifer J. , Brodie Rachel 
Published: September 2021

171 Background: Few patient-reported outcome performance measures (PRO-PMs) have been validated for the cancer population. The testing that has occurred mostly focuses on advanced cancers despite the fact that the majority of people with cancer are diagnosed with earlier stage disease. We developed and tested PRO-PMs to assess quality of life, pain and fatigue in adult patients completing curative-intent chemotherapy for breast, colon and non-small cell lung cancers. Our goal is to develop measures that target symptoms that impact entry into the survivorship phase. Methods: We recruited 20 diverse test sites from the Michigan Oncology Quality Collaborative (MOQC) and the Alliance of Dedicated Cancer Centers (ADCC). Test sites enrolled patients, administered surveys, and collected clinical and demographic data. A Technical Expert Panel and the Patient and Caregiver Council selected PROMs and provided testing guidance. We assessed data collection feasibility and clinician/staff/patient burden throughout the testing process. Results: PROMIS instruments were selected due to psychometric testing in the target population, public availability and acceptability to patients and test sites. 1,753 patients were enrolled between 10/1/19 – 3/31/21. The COVID public health emergency disrupted testing and resulted in lower than expected enrolled patients/completed surveys; however, adaptations led to expansions in survey administration methods. Preliminary practice-level performance results from 10 sites show variation across sites for pain interference (mean = 50.5, SD = 2.8, with a range of 44.6—54.6) and fatigue (mean 49.2, SD = 2.8, with a range of 44.6--54.3). Some test sites reported PRO implementation to be burdensome; however, most patients evaluated did not find survey completion to be burdensome. Conclusions: Next steps include testing risk adjustment variables/model, creating adjusted performance scores, reliability and validity testing. Despite the consensus goal of PRO-PMs in oncology, barriers to implementation persist and important methodologic barriers exist (e.g., ability to achieve sufficient sample size in an oncology practice; defining the most appropriate numerator calculation that reports the desired quality concept and is appropriate for the PROM being used; analytic best practices for PRO-PM adjustment/testing). This project is contributing to the knowledge base as we seek to ensure that PRO-PMs provide meaningful, actionable, patient-centered quality data with benefits that outweigh the burden of implementation.
Patients’ perspective on the quality of prostate cancer follow-up care.
Authors: Wollersheim Barbara M. , van der Poel Henk G. , van Asselt Kristel M. , Pos Floris J. , Akdemir Emine , Vis Andre , Lampe Menuhin I. , van den Bergh Roderick , Somford Diederik Meindert , Knipscheer Ben , Cauberg Evelyne C.C. , Noordzij Arjen , Aaronson Neil K , Boekhout Annelies H. , van de Poll-Franse Lonneke V 
Published: September 2021

175 Background: Information about prostate cancer patients’ perspective on the quality of their follow-up care in the hospital is important to optimize survivorship care. This study assessed the quality of prostate cancer follow-up care as experienced by cancer patients and its association with patients’ sociodemographic and clinical characteristics, and treatment-related symptom burden. Methods: We surveyed 385 (response rate, 100%) patients with localized prostate cancer participating in a randomized controlled trial comparing the (cost)effectiveness of specialist- versus primary care-based prostate cancer follow-up. For this study, we used baseline data that were collected during patients’ first follow-up visit at the hospital (2-34 weeks) after primary treatment (radical prostatectomy or radiotherapy) prior to randomization. We assessed patients’ ratings of the quality of follow-up care using the Assessment of Patient Experiences of Cancer Care survey. This survey consists of thirteen scales: getting needed care, timeliness of care, waiting time in physician’s office, information exchange, physician’s affective behavior, physicians’ knowledge about patients’ life, interaction with nurses, interaction with office staff, symptom management, symptom information provision, health promotion, coordination of care, and overall rating of care. Logistic regression analysis was used to identify factors associated with perceived quality of follow-up care. Results: Patients reported positive experiences with follow-up care for 10 of 13 scales, with mean scores ranging from 72 to 97 (on a 0-100 response scale). The three scales where patients reported suboptimal follow-up care were symptom management (mean score of 43), health promotion (mean score of 45), and physicians’ knowledge about patients’ life (mean score of 66). Overall, patients’ report of suboptimal quality of follow-up care was associated significantly with being more highly educated, not having a partner, being older, having multiple comorbidities, and experiencing symptoms (urinary, bowel, and hormonal symptoms). Conclusions: Prostate cancer patients were generally positive about their initial, hospital-based follow-up care after primary surgery or radiation. However, physicians’ knowledge about patients’ lives, symptom management, and health promotion was rated as suboptimal. The findings point to areas where prostate cancer survivorship care can be improved.
Patient responses to weekly electronic patient-reported outcomes.
Authors: Dent D'Ambra , Ingram Stacey A. , Lawhon Valerie , Jamy Omer , Giri Smith , Scott Julie , Still Nadia , Wujcik Debra , Rocque Gabrielle Betty 
Published: September 2021

182 Background: Home-based symptom monitoring using patient reported outcomes has been shown to reduce symptom burden and hospitalizations, while improving quality of life and overall. The primary goal of this study was to evaluate the early feasibility of home-based symptom monitoring. Methods: This prospective single-arm pilot study evaluated a two-part education and technology intervention (home-based symptom monitoring) for clinicians treating Multiple Myeloma (MM) and Acute Myeloid Leukemia (AML) patients. Inclusion criteria included patients ≥ 60 who were anticipating a treatment decision. Participants completed a baseline survey and then enrolled into the PROmpt® symptom monitoring platform, which used text or email to prompt weekly symptom surveys. Patients receive an auto-generated self-management plan based on electronic patient reported outcomes (ePRO). If severe symptoms were reported (score of > 7/10), alerts were sent to clinical nurses. Outcomes for this study included proportion of patient approach who agreed to participate, patient completion rates (completion of weekly surveys), compliance rate (completion of total surveys), number of alerts generated, and type of alert. Feasibility was defined as a completion rate of > 70%. Results: Between September 1, 2020 –May 19, 2021; 114 patients were screened, 77 were approached, and 35 were enrolled (18) MM, (17) AML patients. Of non-participants, 11 were not seeking care at the institution, 10 patients were uninterested or did not have a smartphone, 9 patients were ineligible, and 9 were unsure and left with information about the study, 3 declined enrollment. The majority (80%) or participants were ages 60-74; 20% of patients were ages 75+. Over the 13-week period, AML patients completed 195/220 (compliance rate of 89%). The average completion rate was 92%. For MM, 192/233 surveys were completed (82% compliance rate). The average completion rate was 94%. For AML, 9 was the average number of completed surveys and the average number for MM was 8. Over 3 months, there were 294 moderate to severe alerts generated for AML and MM patients. For AML patients, there were 40 fatigue, 25 constipation, 21 pain, 17 decreased appetite, 11 insomnia, 11 rash, 6 anxiety, 7 dyspnea/cough, 7 diarrhea, 5 depression/sadness, 4 nausea/ vomiting, 4 mouth/ throat sores, 3 neuropathy, 3 fever, and 2 alerts for other symptoms. Within a 3 month time span for MM patients, there was 35 pain, 21 constipation, 18 fatigue, 11 rash, 10 neuropathy, 9 anxiety, 7 insomnia, 6 depression/sadness, 4 decreased appetite, 4 other symptom, and 1 nausea/vomiting alert. Conclusions: This study demonstrated early feasibility with over 80% of patient completing their surveys with a high compliance rate. Future analysis will include both final implementation outcomes as well as patient outcomes for all patients within the study.