bluuebunny/crossref_metadata_2025_split huggingface dataset:
Development of a patient-reported outcome measure (PROM) screening strategy for early palliative care needs in outpatients with advanced cancer.
Authors: Kaufmann Tara L. , Rocque Gabrielle Betty , Kvale Elizabeth Ann , Kamal Arif , Pignone Michael , Bennett Antonia Vickery , Saxton John , Hernandez Rabecca-Kimberly , Stover Angela M. 
Published: September 2022

203 Background: There is a critical need to develop standardized and feasible methods to monitor patients for unmet palliative needs and direct timely referral to specialty palliative care. We developed a patient reported outcome measure (PROM) measurement strategy to screen patients for multidimensional palliative care needs. Methods: Guided by evidence-based frameworks for early palliative care in oncology, we identified 8 key domains for PROM monitoring that are meaningful and actionable in clinical care and appropriate for direct patient report. We conducted a systematic search for PROMs assessing these key domains using the Palliative Care Research Cooperative (PCRC) Measurement Core resources and the Grid-Enabled Measures Database. PROMs for each domain were compared for content coverage, psychometric properties, proprietary availability, Spanish translation, and attributes (response options, length, literacy demand). Results: We selected 13 PRO items for weekly monitoring (Symptom PROs) and 11 PRO items for monthly monitoring (Palliative PROs) (Table). We did not identify any validated PROMs to assess caregiver burden from the patient perspective. Validated PROMs in short formats for spiritual/existential needs are limited. Conclusions: Existing PROMs are limited in capturing the multi-dimensionality of palliative care needs for patients with cancer, particularly for spiritual needs and patient-reported caregiver burden. Future work will focus on piloting identified PROMs to monitor patients for early palliative care needs and determining thresholds to trigger referrals to specialty palliative care.[Table: see text]
Efficacy of a brief telemedicine-based cognitive behavioral treatment (BRIGHT) versus attention control for head and neck cancer survivors with body image distress: A randomized trial.
Authors: Graboyes Evan Michael , Maurer Stacey N , Balliet Wendy , Li Hong , Williams Amy M. , Osazuwa-Peters Nosayaba , Padgett Lynne , Yan Flora , Gordis Tamar , Rush Angie , Ruggiero Kenneth J. , Sterba Katherine R. 
Published: September 2022

212 Background: Nearly 1 in 3 head and neck cancer (HNC) survivors suffer from body image distress (BID), a source of devastating psychosocial morbidity that impairs quality of life. Evidence-based strategies to manage BID among HNC survivors are lacking. This trial evaluates the preliminary efficacy of BRIGHT (Building a Renewed ImaGe after Head & neck cancer Treatment), a brief tele-cognitive behavioral intervention, relative to attention control (AC), at reducing BID among HNC survivors. Methods: HNC survivors with clinically significant BID were randomized to BRIGHT (n = 20) or AC (n = 24). BRIGHT was delivered by a psychologist in 5 weekly video tele-medicine sessions. AC consisted of dose- and delivery-matched survivorship education. Changes in HNC-related BID and cancer-related BID were assessed using the IMAGE-HN and Body Image Scale (BIS), respectively. The effect of BRIGHT vs AC was analyzed using generalized linear models. Clinical response (proportion of patients with a clinically meaningful change in IMAGE-HN and BIS scores) for BRIGHT vs AC was analyzed with logistic regression. Results: The median age was 63 years (range 41-80) and 61% had stage III/IV HNC. BRIGHT decreased HNC-related BID from baseline to 1- and 3-months post-intervention relative to AC (Table). At 3-months post intervention, the response rate of BRIGHT on HNC-related BID was 6.6-fold higher than AC (OR = 6.6; 90% CI 2.0 to 21.8). BRIGHT decreased cancer-related BID from baseline to 3-months post-intervention vs AC (Table). The improvement in HNC-related BID and cancer-related BID for BRIGHT vs AC at 3-months was clinically significant and the effect size was large (Cohen’s d = -0.9, 90% CI -1.4 to -0.4 for each). Conclusions: In this pilot RCT, BRIGHT results in clinically meaningful improvements in BID among HNC survivors. These promising preliminary data support conducting a large efficacy trial to establish BRIGHT as the first evidence-based treatment for HNC survivors with BID. Clinical trial information: NCT03831100. [Table: see text]
Defining the needs of lung cancer survivors: Physical, social, emotional, and medical needs.
Authors: Guo Matthew , Miller Mattea , Olson Sarah , Eaton Cyd , Boulanger Mary , Turner Michelle , Hsu Melinda Laine , Feliciano Josephine Louella 
Published: September 2022

225 Background: Lung cancer survivors (LCS) are a rapidly growing population. Cancer survivors benefit from dedicated survivorship care, but the physical, psychosocial, and medical needs of LCS are poorly defined. Methods: Non-small cell LCS (defined as alive ≥1 years from diagnosis) of any stage treated at Johns Hopkins were invited to complete an IRB-approved cross-sectional survey of needs of 4 subscales (physical, social, emotional, and medical needs) rated on a 5-point Likert scale (1 = no need, 5 = highest need). Demographic and clinical information were collected by chart review and patient reported questionnaire. Multiple regression models identified factors that were significantly associated with greater total number of needs on each subscale. Results: 235 surveys were completed. We excluded surveys with < 80% completion. Non-Caucasian race was associated with a significantly lower rate of survey completion (p = 0.002). Median age of LCS who completed the survey was 69, most were female (62%), Caucasian (74%), married (71%), or had stage III/IV cancer (60%). More than half of respondents reported emotional needs of fear of recurrence (79%) and living with uncertainty (74%). Common physical needs included fatigue (70%), sleep disturbance (60%), memory and concentration (57%), and weakness (54%). Multivariate analysis identified factors associated with higher needs in physical, social, and emotional needs (Table). We did not identify any factors associated with differences in medical needs. NS – non-significant value. Conclusions: We identified physical, emotional, social, and medical needs that burden survivors of NSCLC. Emotional needs are prevalent. Clinical and demographic factors are independently associated with higher needs in physical, social, and emotional domains. These results are critical in identifying high-impact gaps in providing survivorship care for lung cancer survivors. Future work to identify interventions to address needs is crucial.[Table: see text]
Shift in survivorship care delivery.
Authors: McGrath Elizabeth Boutin , Willyard Jennifer , Langa Maya , Walsh Sarah K. , Buccellato Andrea B 
Published: September 2022

230 Background: Survivorship care often occurs within a single visit at the end of treatment to discuss a treatment summary and/or survivorship care plan with a patient. With increased understanding of both immediate and long-term effects of cancer and cancer treatment we need to consider support for the patient from the time of diagnosis through the end of the patient’s life. In this quality improvement (QI) initiative, a team of survivorship stakeholders utilized survey and focus group methodology to develop a set of recommendations to support a large, academic medical center in a rural setting to move toward this holistic notion of survivorship care. Methods: Surveys regarding experience with survivorship care were deployed to oncology providers, allied health providers, and patients and care partners. Surveys were deployed via a web-based survey tool using email groups and lists developed by the oncology department, as well as printed handouts with the survey URL and a QR code available to patients during clinic visits. A focus group was conducted with oncology APPs to discuss findings and to develop recommendations to support survivorship care delivery. Results: Responses received from 59 patients, 20 care partners, 24 allied health providers, and 19 providers. Over half (52.6%) of patients and care partners indicated that survivorship services were “very important” to their care, with less than 10 respondents (11.5%) indicating that they were “not at all important.” Providers indicated that they do discuss and/or provide survivorship support to their patients (84.2% of respondents), but almost 80% indicated that they were only somewhat knowledgeable (36.8%) or not knowledgeable at all (42.1%) about survivorship services available to patients and care partners. Both allied health and providers indicated that documenting survivorship care was complex. Only 12.5% of providers indicated that patients had a formal survivorship visit; instead, providers indicated that survivorship care is incorporated into routine follow-up visits (75%) and/or active treatment visits (50%). Both allied health (60.0%) and providers (69.2%) indicated that documentation, if done at all, was entered through a free text note. Many acknowledged that this made data tracking, whether for continuity of care or program analysis purposes, labor-intensive. Conclusions: This QI initiative revealed the need for two supportive mechanisms to facilitate the shift from survivorship care that’s limited to a dedicated visit type or tied to a specific document to survivorship care that is woven into all aspects of a patient’s treatment and life beyond treatment. The first mechanism is a robust set of informational resources to ensure providers are knowledgeable about the services that are available to their patients and the referral mechanisms for those services. The second is a mechanism within the EHR to allow survivorship notes to be entered into any visit type and be extracted easily from the system.
Developing a standardized approach to prevention and outpatient management of febrile neutropenia.
Authors: Crespo Andrea , Gallo-Hershberg Daniela , Enright Katherine , Forbes Leta Marie , Vu Kathy 
Published: September 2022

234 Background: Optimal prevention and safe management of febrile neutropenia (FN) in the outpatient setting, when clinically appropriate, can help to keep vulnerable patients from experiencing severe complications requiring hospitalization. Variation in the prevention and outpatient management of FN was identified as a quality and safety gap by Ontario clinicians. This initiative aimed to facilitate a standardized approach to prevention and outpatient management of FN through the development of practical, evidence-based health-care provider and patient resources. Methods: A clinical practice guideline was developed by a 15-member multidisciplinary Working Group (WG) consisting of physicians, pharmacists, nurses, and administrators who are knowledgeable in the areas of prevention and management of FN. The WG reviewed current relevant international guidelines and available literature on primary and secondary FN prophylaxis and FN management, with an emphasis on the optimal use of granulocyte colony-stimulating factor (G-CSF) and appropriate FN management in the outpatient setting. The 2016 Cancer Care Ontario recommendations on the use of G-CSF were used as a foundation for the prevention of FN content. Key clinical questions were identified by the WG, and content was approached with an Ontario-specific lens. Recommendations were developed using an iterative consensus-building process over six WG meetings. The guideline report was reviewed by external clinical experts who validated final content. Accompanying patient information was informed by health literacy best practices, existing symptom management resources, and input from patient education experts, patients, and caregivers. Results: A user-friendly clinical practice guideline was created. Definitions, risk factors, FN prophylaxis strategies based on risk/treatment intent, and appropriate outpatient management of FN are described. Key clinical questions are reviewed and a total of 25 evidence-informed consensus-based recommendations are presented. The guideline includes FN risk assessment and outpatient FN management algorithms, as well as summaries of available literature and WG discussion. The accompanying patient information explains what neutropenia and neutropenic fever are, lists potential symptoms, and describes management strategies in patient-friendly language. All resources are publicly available on the Ontario Health-Cancer Care Ontario website and have been disseminated broadly to relevant stakeholders via email, social media, and webinars. Conclusions: Review of current evidence and expertise from oncology and infectious disease clinicians resulted in an evidence-informed, consensus-based guideline. This clinical practice guideline and accompanying patient information resource can help to facilitate safe, standardized prevention and appropriate outpatient management of FN.
Evaluating the use of web versus mobile devices for ePRO reporting and severe symptom responses at 6 cancer centers.
Authors: Cronin Christine , Tramontano Angela , Schrag Deborah , Wong Sandra L. , Osarogiagbon Raymond U. , Hazard-Jenkins Hannah W. , Dizon Don S. , Bian Jessica J , Hassett Michael J. 
Published: September 2022

241 Background: Monitoring electronic patient-reported outcomes (ePROs) improves quality of life, reduces acute care, and extends survival in cancer patients. Different modalities for collecting ePROs exist. Many efforts focus on mobile apps, but optimal methods for reporting are not well established. We sought to determine whether patient engagement and symptom reporting patterns differed by submission modality. Methods: Through the SIMPRO Consortium, ePRO questionnaires (eSyM) were collected from medical oncology (MO) and surgical (SUR) patients at six health systems between September 2019-March 2022. Questionnaires assessing 12 symptoms plus functional status and overall wellbeing were sent 2-3 times per week via patient portal and made accessible through two modalities: a web platform or mobile device app (mobile). Patterns and predictors of reporting modality were ascertained using descriptive statistics and logistic regression. Results: In total, 6460 patients submitted 47,736 questionnaires: 74% via web and 26% via mobile. Of 2679 MO responders, 53% reported via web, 0.7% via mobile only, and 43% via both. Older, black, and unemployed MO patients were more likely to report via web only. Of 3781 SUR responders, 55% reported via web, 0.3% via mobile only, and 45% via both. Older and unemployed SUR patients were more likely to report via web only; disabled SUR patients were less likely to use web only. Patients utilizing both modalities reported significantly more moderate-severe symptoms than web only responders [Table]. Conclusions: Very few patients reported via mobile only, which was unexpected in the context of trends toward mobile-based patient engagement. Moderate-severe symptoms were reported more frequently by dual-modality responders. Patients with access to both modalities may be more likely to report symptoms in real-time compared to web-users who may delay reporting until they have access to a device. The resulting difference between web and mobile reporting modalities could be due to age, race, and employment; future studies should assess other factors, such as locality and cellular coverage. This work emphasizes the importance of deploying ePROs via multiple modalities to maximize accessibility and response rates. Clinical trial information: NCT03850912. [Table: see text]
Are YouTube videos a reliable information source for young women with metastatic breast cancer?
Authors: Morena Nina , Ahisar Yitzchok , Wang Xena , Nguyen Diana , Rentschler Carrie A. , Meguerditchian Ari N. 
Published: September 2022

244 Background: Young women with metastatic breast cancer (MBC) are an underserved population, rendering them susceptible to media sources that lack in credibility and reliability. YouTube (YT) is the most commonly used search engine following Google. This study aims to assess the quality of MBC YT videos and to identify common themes in MBC experiences. Methods: A systematic review of YT videos with search terms “metastatic breast cancer young” was conducted in 08/2021. Title, date uploaded, length, poster identity, number of likes, dislikes, and comments were collected. Understandability, actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT) for audiovisual (A/V) materials; information reliability/quality was assessed with DISCERN. Scoring was done by 3 reviewers. Themes, presence of sponsorships, healthcare professionals’ and patients’ narratives were also reported. Results: 101 videos were identified. Of these, 78.2% were sponsored. Average video length was 14.9 minutes (SD 22.5). Majority were posted by nonprofit groups and breast cancer advocacy organizations. Mean PEMAT A/V score was 78.8% (SD 15.3) and 43.1% (SD 45.2) for understandability and actionability, respectively. Overall, videos had moderate reliability and quality levels; mean DISCERN score was 2.44/5 (SD 0.7). Patient narratives were shared in 63.3% and healthcare professionals in 57.4%. Identified themes include treatment (66.3%), family relationship (45.5%), motherhood (37.6%), terminal status (31.6%), the path to diagnosis (28.7%), and spousal relationship (24.7%). Conclusions: YouTube videos about MBC are highly understandable but demonstrate low to moderate rates of actionability, with low reliability and quality scores. Many have a potential commercial bias. More research is needed to evaluate their impact on patient decisions and possible interventions provided by healthcare institutions.[Table: see text]
Communication with caregivers about tumor genomic sequencing in childhood cancers.
Authors: Lee Brittany M. , Bonkowski Emily , Marron Jonathan M , Barton Krysta S. , Rosenberg Abby R. 
Published: September 2022

245 Background: Advances in genomic testing have the potential to improve the diagnosis, risk stratification, and targeted treatment of childhood cancers, and tumor genomic sequencing (TGS) at diagnosis is becoming standard of care. Nevertheless, little is known about how best to communicate information about the process and intent of TGS to patients and their caregivers, nor about discussion of TGS results and their implications. This demonstrates a glaring need, particularly given the already distressing time of a new diagnosis. Methods: This qualitative study included English-speaking caregivers (> 18yo) of children (< 18yo) with cancer (diagnosed 2mo-3yr prior), who had TGS sent at diagnosis. Caregivers completed a short demographic survey, and we extracted child medical data from the electronic health record. We conducted semi-structured, one-on-one interviews with participants about their experiences with and recommendations for communication about TGS at diagnosis. We transcribed the interviews verbatim and used Dedoose qualitative software to code the transcripts. We employed a conventional content approach for codebook development and used inductive coding, followed by deeper thematic analyses. Results: A total of 12 caregivers enrolled. Their median age was 39 years (range 32 – 52) and most were white (11, 92%), female (9, 75%), and had at least a bachelor’s degree (8, 67%). Their children had leukemia (8, 67%), neuroblastoma (2, 17%), or brain tumors (2, 17%). Ten (83%) of the children had somatic findings on TGS, 3 (25%) of which prompted the recommendation for germline testing. On average, interviews lasted 36 minutes (19-46). We found two information-delivery themes, both of which underscored existing communication recommendations in pediatric oncology. (1) Caregivers experience informational and emotional overload at the time of their child’s cancer diagnosis. The intensity of emotions negatively impacts information processing, and comprehension of information generally occurs best over time. Some parents described managing their emotions through eliciting more information. (2) Caregivers recommended a systematic delivery of information about TGS. Many preferred concise, direct information about TGS upfront, along with written information and opportunities to request more information over time. Some caregivers specifically cited the value of receiving information that would allow them to be “mentally prepared,” such as hearing about the potential for unexpected findings. Conclusions: Caregivers’ preferences for communication about TGS at diagnosis fit within established communication practices in pediatric oncology. Given both the complexity and potential psychosocial impacts of TGS, particular attention to systematic, standardized but tailorable information delivery to caregivers about TGS is warranted.
Advice from one patient to another: A qualitative analysis of patients’ perspectives about chemotherapy initiation.
Authors: Malinowski Catalina , Housten Ashley , Paredes Edna , Chavez Mac Gregor Mariana 
Published: September 2022

255 Background: Although the association between delays in (neo)adjuvant chemotherapy initiation and adverse outcomes is well-documented, research into what those with breast cancer experience during their delay is sparse. This information can provide insight for newly diagnosed women on preparing for chemotherapy initiation and inform potential interventions to facilitate chemotherapy initiation. This study aimed to assess and identify the multilevel factors contributing to the barriers and facilitators of initiating chemotherapy. We present a qualitative exploration of patient shared experiences navigating the cancer care journey from breast cancer diagnosis to treatment activation. Methods: In this qualitative study, we included English or Spanish-speaking women diagnosed with primary invasive breast cancer who experienced chemotherapy initiation delay. We conducted semi-structured interviews exploring perceptions about individual, community, and system-level barriers and facilitators contributing to starting chemotherapy. We prompted participants to reflect on their personal experience navigating their cancer journeys from initial diagnosis to treatment initiation. Interviews were audio-recorded, transcribed verbatim, and coded using the Sort and Sift, Think and Shift qualitative approach to identify concepts and themes within and across transcripts. Results: Twenty-two participants completed semi-structured interviews and questionnaires (range 27-70 years); they identified as Latina (n = 8), Black (n = 5), and non-Latina White (n = 9). Our participants thought that engaging their medical teams and seeking support earlier was essential for their treatment journeys. They emphasized being proactive and thorough in all aspects of their journey, particularly in processing medical recommendations, communicating with medical personnel, and identifying areas of need. Although explicit insight into chemotherapy delay was rare, participants expressed the importance of beginning treatment promptly. They shared advice on acquiring support (e.g., financial, emotional, logistical, spiritual) and suggested connecting with breast cancer survivors to overcome the complex challenges of cancer care. Conclusions: Patients outlined the benefit of attaining support outside of their medical teams to overcome barriers and initiate treatment promptly. Family, friends, and connecting with breast cancer survivors were vital in achieving activation. Patient perspectives regarding barriers and treatment facilitators are an essential insight into cancer care journeys that can inform interventions to support patients and improve outcomes. We are using these results to develop a pilot study, to test the acceptability and feasibility of a culturally relevant patient navigation intervention to increase self-efficacy and avoid treatment delays.