Towards cancer equity via patient outreach

Abstract BACKGROUND Reddit, ranking 6th in worldwide Internet site traffic, is a commonly used forum among patients and caregivers affected by brain tumors to discuss diagnoses, treatment, and self-care management. The use of the online forum may suggest patients and caregivers have unmet needs and are seeking further support outside of the clinical setting. We aimed to examine trends from Reddit discussion treads on brain tumors to identify areas of need in patient care. METHODS We used a qualitative, descriptive design to understand patient and caregivers unmet and met needs. We analyzed the top 100 posts and accompanying 271 comments from the ‘braincancer’ subreddit to identify common themes. RESULTS The qualitative content analysis revealed three major topic areas: (1) moving through the grief process; (2) processing diagnostic pathway; and (3) expressing gratitude toward other Reddit users. Most of the authors of the posts were patients with brain tumors (n = 32; 38.5%) who used Reddit as a reflective journaling tool to move through the grief process for themselves or loved ones. About 47% of theses posts discussed the diagnostic process of glioblastoma multiforme (GBM) brain tumors, where users requested an inclusive/welcoming environment in the clinic by their healthcare professionals (HPs). Users also solicited and gave support for other members in the online community. CONCLUSIONS This study highlights the need of implementing social media as a part of HPs’ repertoire for patient outreach/needs. Furthermore, social media outlets like Reddit can help HPs understand the level of support they can give to their patients. Plans of action for physicians seeking to meet the needs of brain tumor patients include monitoring the concerns of patients, becoming verified on the platform/openly identifying themselves online, or conducting ‘Ask Me Anything’ discussions to educate patients.

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Health Literacy in Non-Communicable Diseases

Research Anthology on Public Health Services, Policies, and Education ◽

10.4018/978-1-7998-8960-1.ch013 ◽

2021 ◽

pp. 257-297

Author(s):

Christina Zarcadoolas ◽

Barbara K. Kondilis

Keyword(s):

New York ◽

Health Literacy ◽

Communicable Diseases ◽

Behavior Changes ◽

Non Communicable Diseases ◽

Case Examples ◽

Education Material ◽

Short And Long Term ◽

Patient Outreach

The chapter highlights some of the methods used to embed health literacy principles into patient outreach and education materials about non-communicable diseases: chronic conditions including mental health conditions. A person's or population's understanding and engagement with health represents its health literacy. Health literacy is a form social capital. The authors use an ecological, socially contextualized model of health literacy and demonstrate how it guides the structure and content of health education material in case examples from New York City, United States, and Greece in Europe. While the specific methods used in these cases vary, the essential principal is that it is critical to identify and build on information about an individual's health literacy contextualized in the individual's or group's socio-cultural and lived experiences. Only this way can an individual's or group's health literacy be advanced so that they can engage in behavior changes for both short- and long-term health outcomes.

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Benchmarking HIV Quality Measures in the US OPERA HIV Cohort

Open Forum Infectious Diseases ◽

10.1093/ofid/ofz418 ◽

2019 ◽

Vol 6 (10) ◽

Author(s):

Robert Heglar ◽

Rodney Mood ◽

Julie L Priest ◽

Kathy L Schulman ◽

Gregory P Fusco

Keyword(s):

Viral Suppression ◽

Retention In Care ◽

Quality Measures ◽

Medical Visit ◽

Visit Frequency ◽

National Quality ◽

The Us ◽

Patient Outreach ◽

Assess Quality ◽

Improve Patient

Abstract Background Quality measures are effective tools to improve patient outreach, retention in care, adherence, and outcomes. This study benchmarks National Quality Forum–endorsed HIV quality measures in a US clinical cohort. Methods This observational study utilized prospectively captured data from the Observational Pharmaco-Epidemiology Research and Analysis (OPERA) database over 2014−2016 to assess quality measure achievement among patients with HIV in terms of medical visit frequency (#2079), medical visit gaps (#2080), viral suppression (#2082), and antiretroviral therapy (ART) prescriptions (#2083). The proportion of patients meeting each measure was calculated. Generalized estimating equations assessed trends in measure achievement. Results The OPERA sample included 23 059−42 285 patients with similar demographics and characteristics across measurement periods. Overall, 62%−66% of patients met the visit frequency measure (#2079), 81%−85% had no gaps between visits (#2080), 71%−73% achieved viral suppression (#2082), and 92%−94% were prescribed ART (#2083). The adjusted odds of achieving viral suppression and being prescribed ART increased over time by 3% and 19%, respectively, despite a significant decline in patient engagement (16% for #2079, 25% for #2080). Patients <30 years of age were significantly less likely to meet all measures than older patients (P < .0001), with particularly low levels of engagement. Measure achievement also varied by gender, ethnicity, region, and select clinical characteristics. Conclusions Despite gains in the rate of ART prescription and viral suppression, there remains room for improvement in the care of patients with HIV. Strategies for quality improvement may be more effective if tailored by age group.

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0636 Using AI To Predict Future CPAP Adherence and the Impact of Behavioral and Technical Interventions

SLEEP ◽

10.1093/sleep/zsaa056.632 ◽

2020 ◽

Vol 43 (Supplement_1) ◽

pp. A243-A243

Author(s):

W Hevener ◽

B Beine ◽

J Woodruff ◽

D Munafo ◽

C Fernandez ◽

...

Keyword(s):

Effect Size ◽

Statistical Significance ◽

Post Intervention ◽

Cpap Adherence ◽

Cohen’S D ◽

Usage Patterns ◽

Patient Outreach ◽

Cohen's D ◽

The Impact ◽

Usage Data

Abstract Introduction Clinical management of CPAP adherence remains an ongoing challenge. Behavioral and technical interventions such as patient outreach, coaching, troubleshooting, and resupply may be deployed to positively impact adherence. Previous authors have described adherence phenotypes that retrospectively categorize patients by discrete usage patterns. We design an AI model that predictively categorizes patients into previously studied adherence phenotypes and analyzes the statistical significance and effect size of several types of interventions on subsequent CPAP adherence. Methods We collected a cross-sectional cohort of subjects (N = 13,917) with 455 days of daily CPAP usage data acquired. Patient outreach notes and resupply data were temporally synchronized with daily CPAP usage. Each 30-days of usage was categorized into one of four adherence phenotypes as defined by Aloia et al. (2008) including Good Users, Variable Users, Occasional Attempters, and Non-Users. Cross-validation was used to train and evaluate a Recurrent Neural Network model for predicting future adherence phenotypes based on the dynamics of prior usage patterns. Two-sided 95% bootstrap confidence intervals and Cohen’s d statistic were used to analyze the significance and effect size of changes in usage behavior 30-days before and after administration of several resupply interventions. Results The AI model predicted the next 30-day adherence phenotype with an average of 90% sensitivity, 96% specificity, 95% accuracy, and 0.83 Cohen’s Kappa. The AI model predicted the number of days of CPAP non-use, use under 4-hours, and use over 4-hours for the next 30-days with OLS Regression R-squared values of 0.94, 0.88, and 0.95 compared to ground truth. Ten resupply interventions were associated with statistically significant increases in adherence, and ranked by adherence effect size using Cohen’s d. The most impactful were new cushions or masks, with a mean post-intervention CPAP adherence increase of 7-14% observed in Variable User, Occasional Attempter, and Non-User groups. Conclusion The AI model applied past CPAP usage data to predict future adherence phenotypes and usage with high sensitivity and specificity. We identified resupply interventions that were associated with significant increases in adherence for struggling patients. This work demonstrates a novel application for AI to aid clinicians in maintaining CPAP adherence. Support

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Identify chf and copd paitients at high risk of hospitalization: Using predictive analytics for patient outreach

Value in Health ◽

10.1016/j.jval.2014.03.1174 ◽

2014 ◽

Vol 17 (3) ◽

pp. A201

Author(s):

Q.C. Wang ◽

S.L. Higgins ◽

R. Chawla ◽

S. Nigam

Keyword(s):

High Risk ◽

Predictive Analytics ◽

Patient Outreach

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Video education to facilitate patient outreach about living kidney donation: A proof of concept

Clinical Transplantation ◽

10.1111/ctr.14477 ◽

2021 ◽

Author(s):

Liise K. Kayler ◽

Rachel E. Seibert ◽

Beth A. Dolph ◽

Maria M. Keller ◽

Renee B. Cadzow ◽

...

Keyword(s):

Kidney Donation ◽

Proof Of Concept ◽

Living Kidney Donation ◽

Patient Outreach ◽

Video Education

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Observational Study of the Effect of Patient Outreach on Return to Care

JAIDS Journal of Acquired Immune Deficiency Syndromes ◽

10.1097/qai.0000000000001474 ◽

2017 ◽

Vol 76 (2) ◽

pp. 141-148 ◽

Cited By ~ 5

Author(s):

Peter F. Rebeiro ◽

Giorgos Bakoyannis ◽

Beverly S. Musick ◽

Ronald S. Braithwaite ◽

Kara K. Wools-Kaloustian ◽

...

Keyword(s):

Observational Study ◽

Patient Outreach

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A Multifaceted Intervention to Improve Influenza, Pneumococcal, and Herpes Zoster Vaccination among Patients with Rheumatoid Arthritis

The Journal of Rheumatology ◽

10.3899/jrheum.150984 ◽

2016 ◽

Vol 43 (6) ◽

pp. 1030-1037 ◽

Cited By ~ 16

Author(s):

David W. Baker ◽

Tiffany Brown ◽

Ji Young Lee ◽

Amanda Ozanich ◽

David T. Liss ◽

...

Keyword(s):

Rheumatoid Arthritis ◽

Insurance Coverage ◽

Pneumococcal Vaccination ◽

Vaccination Rate ◽

Rate Of Change ◽

System Level ◽

Vaccination Rates ◽

Order Sets ◽

Vaccination History ◽

Patient Outreach

Objective.Vaccination rates for influenza, pneumococcus, and zoster in patients with rheumatoid arthritis (RA) have remained low. Simple electronic or paper reminders have produced only small increases in vaccination rates. We sought to identify a more effective approach to improve vaccination rates.Methods.We conducted a system-level intervention at an academic rheumatology clinic that included electronic reminders with linked order sets, physician auditing and feedback, patient outreach, and optional printed prescriptions for zoster vaccination at an outside pharmacy.Results.We targeted 1255 eligible patients with RA. There was no change in patients’ self-reported influenza vaccination rates, although the baseline self-reported rate was already high and much higher than that documented in the electronic health record. Pneumococcal vaccination rates increased from 28.7% to 45.8%; in regression analysis, the rate of change in pneumococcal vaccination increased by 9.4% per year above baseline trends (95% CI 3.9–15.5, p = 0.002). The rate of zoster vaccination increased from 2.5% to 4.5% overall (p = 0.01) and from 3.0% to 6.6% among patients not receiving biologic therapy that precluded zoster vaccination.Conclusion.Although the intervention improved pneumococcal and zoster vaccination rates, the improvement in pneumococcal vaccination rate was less than expected, and the zoster vaccination rate remained low even for ideal candidates. Likely barriers include lack of familiarity and difficulty using electronic reminders and order sets, uncertainty about the value and safety of recommended vaccines, and uncertainty about patients’ insurance coverage and prior vaccination history. Future interventions should include strategies to address these.

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Proceedings of the Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) Oligodendroglioma Workshop

Neuro-Oncology Advances ◽

10.1093/noajnl/vdz048 ◽

2019 ◽

Vol 2 (1) ◽

Author(s):

Marta Penas-Prado ◽

Jing Wu ◽

Daniel P Cahill ◽

Daniel J Brat ◽

Joseph F Costello ◽

...

Keyword(s):

Health Care Providers ◽

Scientific Progress ◽

Clinical Trial Design ◽

Care Providers ◽

Advocacy Groups ◽

Advocacy Organizations ◽

Call To Action ◽

International Collaborations ◽

Advance Research ◽

Patient Outreach

Abstract Background Oligodendroglioma is a rare primary central nervous system (CNS) tumor with highly variable outcome and for which therapy is usually not curative. At present, little is known regarding the pathways involved with progression of oligodendrogliomas or optimal biomarkers for stratifying risk. Developing new therapies for this rare cancer is especially challenging. To overcome these challenges, the neuro-oncology community must be particularly innovative, seeking multi-institutional and international collaborations, and establishing partnerships with patients and advocacy groups thereby ensuring that each patient enrolled in a study is as informative as possible. Methods The mission of the National Cancer Institute’s NCI-CONNECT program is to address the challenges and unmet needs in rare CNS cancer research and treatment by connecting patients, health care providers, researchers, and advocacy organizations to work in partnership. On November 19, 2018, the program convened a workshop on oligodendroglioma, one of the 12 rare CNS cancers included in its initial portfolio. The purpose of this workshop was to discuss scientific progress and regulatory challenges in oligodendroglioma research and develop a call to action to advance research and treatment for this cancer. Results The recommendations of the workshop include a multifaceted and interrelated approach covering: biology and preclinical models, data sharing and advanced molecular diagnosis and imaging; clinical trial design; and patient outreach and engagement. Conclusions The NCI-CONNECT program is well positioned to address challenges in oligodendroglioma care and research in collaboration with other stakeholders and is developing a list of action items for future initiatives.

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