IntroductionExisting research has linked increased patient participation in oncology care to greater patient satisfaction, enhanced quality of life, and improved healthcare utilization among patients with cancer. Yet, current measures of patient engagement and similar constructs do not reflect the unique experiences of patients with metastatic breast cancer; they also have limitations in terms of modality, cost, and potential for integration into clinical care. To address this, we sought to develop a new measure of participatory care in metastatic breast cancer care, referred to as the Capacity, Opportunity, and Resources in Metastatic Breast Cancer (CORe-MBC) that could be easily used in clinical care.MethodsA comprehensive pool of candidate items for CORe-MBC was created with input from MBC patients, oncologists, and experts in measure development. Items were tested among 130 English-speaking patients with MBC recruited from a large academic oncology center; participants also completed validated measures of health activation, self-efficacy, satisfaction with care, and social support (e.g., emotional, informational, and tangible). Psychometric testing included exploratory factor analyses, using oblique rotations to evaluate factor structure, and parallel analysis to test for dimensionality.ResultsPatients’ ages ranged from 34 to 90 years. The majority (82%) identified as White, one-third (34%) had less than a college degree, and almost all (99%) were female. Candidate items loaded onto three factors (all factor loadings >.5), reflecting the domains of capacity, opportunity, and resources. A total of 10 items were selected for the final measure. Items demonstrated high internal consistency (α = 0.83). Domains of capacity, opportunity, and resources demonstrated moderate to high construct validity with comparable measures of patient activation (r = 0.56, p <.0001) and self-efficacy (r = 0.31–0.40, p < 0.0005), and multiple measures of satisfaction with healthcare (r = 0.42–0.55, p <.0001), and social support (r = 0.52–0.75, p <.0001), respectively.ConclusionThe CORe-MBC measure appears to be psychometrically valid and reliable. Additional studies are ongoing to further validate use of the tool among diverse populations and within a variety of oncology practices, with the goal of providing clinicians with actionable insights to tailor and improve care.
BACKGROUND:Glucagon-like peptide-1 receptor agonists (GLP-1 RAs) offer important cardiovascular-kidney-metabolic benefits to women with type 2 diabetes (T2D) but are contraindicated during pregnancy. We sought to describe the frequency of GLP-1 RA prescribing among young women with T2D and to examine pregnancy intention, contraceptive use, and receipt of reproductive health counseling in this population. METHODS:A total of 382 English- and Spanish-speaking women with T2D, aged 18-44, were recruited from 38 health centers in Chicago. Patients were enrolled in the usual care arm of an ongoing clinical trial testing a preconception health intervention. GLP-1 RA prescribing was determined via self-report with chart verification. Bilingual research coordinators administered structured surveys measuring pregnancy intention, contraceptive use, and receipt of reproductive health counseling. RESULTS:Participants were sociodemographically diverse; 42.5% had a household income less than $35,000/year, 46% had limited health literacy, and the average age was 36 years. Half (50.8%) were prescribed a GLP-1 RA. Among women prescribed GLP-1 RAs (n = 194), 54.6% intended a future pregnancy; 40.7% used hormonal contraceptives or an intrauterine device. Few reported discussing pregnancy intention (11.9%), contraceptive use (11.4%), or preconception health (13.4%) during their recent visit. Women with limited health literacy were less likely to report discussing preconception health (6.3%, 95% confidence interval [CI]: 1.4-11.2 versus 18.4%, 95% CI: 12.0-24.9, p = 0.01). CONCLUSION:GLP-1 RAs are commonly prescribed to young women with T2D, many of whom intend a future pregnancy, yet reproductive health counseling is scarce. Optimizing preconception care is critical to improve outcomes, particularly for women with limited health literacy.
Background Poor medication adherence among older adults with multiple chronic conditions and polypharmacy is a public health concern stemming from distinct challenges. Prior interventions have largely used a one-size-fits-all approach or resource-intensive approaches inappropriate for busy primary care clinics. Objective To address this, Phenotyping Adherence Through Technology-Enabled Reports and Navigation (PATTERN) was adapted from prior work. PATTERN is a portal-based intervention for monitoring self-reported medication adherence challenges among older adults in primary care. This study sought to implement and evaluate PATTERN’s feasibility and acceptability. Methods We conducted a patient randomized study with a posttest design. Primary care physicians at the participating health center were informed of the study, and approval was obtained to contact their patients. Patient eligibility included being aged 60 years or older, having prescription medications for ≥8 chronic conditions, and an upcoming visit with a physician who had provided approval. Potentially eligible patients were identified using an electronic health record query, and a research coordinator phoned them to confirm eligibility, assess interest, obtain consent, and conduct enrollment. Randomization occurred following enrollment. Those randomized to PATTERN received a medication adherence assessment in their patient portal accounts several days ahead of their visit. The assessment identified whether a patient was experiencing a medication adherence challenge, and if so, the type (cognitive, psychological, medical, regimen-related, social, or economic). Identified challenges were sent to the patient’s primary care physician. Assessment delivery several days ahead of a visit was thought to offer sufficient time for patients to complete it and clinicians to review any challenges. Approximately 2 weeks after visits, the coordinator recontacted participants to conduct posttest interviews. This ensured clinicians had sufficient time to respond to challenges during or after visits. Posttest interviews measured the self-reported use of the portal, demographic and health characteristics, and for those randomized to PATTERN, intervention satisfaction. Self-reported data were captured in REDCap and analyzed descriptively. Electronic health record data were also analyzed descriptively to objectively identify feasibility, that is, whether intervention arm participants completed the PATTERN assessment. Results We enrolled 64 participants (32 received usual care, and 32 received intervention). Most were female (66%, 42/64), not Hispanic or Latino (94%, 60/64), and identified as White (58%, 37/64). The average (SD) age was 75 (6.8) years. Most participants (80%) self-reported using the patient portal ≥12 times per year. However, electronic health record data revealed that less than half of all participants randomized to PATTERN (47%, 15/32) completed the medication adherence assessment. Of those who remembered completing it, 60% (3/5) were very satisfied with the experience and 20% (1/5) were a little satisfied. Conclusions PATTERN has the potential for use with older primary care patients experiencing multiple chronic conditions and polypharmacy. Yet, further adaptation is needed to ensure recipients access their patient portal accounts and complete assessments.
377 Background: Greater patient participation in oncology care has been linked to enhanced patient-provider communication, improved symptom management, greater treatment adherence, and improved healthcare utilization among adults with cancer. While measures of patient engagement exist, few are tailored to the unique healthcare challenges and care decisions of patients with metastatic breast cancer (MBC); most also have limitations in terms of modality, cost, and potential for integration into oncology care. We sought to develop a measure of participatory care for MBC, referred to as the CORe-MBC (Capacity, Opportunity, and Resources in MBC), that would be easy for patients to complete as part of routine care. The purpose of the tool was to identify patients who have difficulty managing their care and to pinpoint the types of challenges encountered to help health systems better align limited resources. Methods: In consultation with MBC patients and oncologists, we conceptualized key components of participatory care, which included: 1) an individual’s capacity, or the knowledge and motivation needed to participate in MBC decision-making; 2) opportunity, or an inclusive healthcare environment with providers who listen to patients and seek to optimize MBC care in line with patient goals; and 3) resources, or the external factors that enable patients to manage their MBC. Candidate items for each domain were generated then refined following cognitive interviews with MBC patients. Resulting items were evaluated among English-speaking adults with MBC recruited from a large academic oncology center. Participants also completed structured surveys assessing health activation, self-efficacy, satisfaction with healthcare, and social support. Psychometric testing included exploratory factor analyses, using oblique rotations to evaluate factor structure, and parallel analysis to test for dimensionality. Results: A total of 130 patients were enrolled. Participants mostly identified as White (82%) and one-third (34%) had less than a college degree; the average age was 62.9 years (range 34-90). Candidate items loaded onto three factors (all factor loadings > .5), reflecting the domains of capacity, opportunity, and resources. A total of 10 items were selected for the final measure. Items demonstrated high internal consistency ( α = 0.83). Domains of capacity, opportunity, and resources demonstrated moderate to high construct validity with measures of health activation ( r = 0.56, p < 0.0001) and self-efficacy ( r = 0.31–0.40, p < 0.0005), satisfaction with healthcare ( r = 0.42–0.55, p < 0.0001), and social support ( r = 0.52–0.75, p < 0.0001), respectively. Conclusions: The CORe-MBC appears to be a valid and reliable tool. Further studies are planned to test the tool among diverse populations in a large academic health center and community oncology center in Chicago, IL and Memphis, TN.
Approximately one in five HIV infections in the United States occurs among cisgender women, those whose gender identity matches their sex assigned at birth. Pre-exposure prophylaxis (PrEP) is a highly effective preventive option for all genders, yet lack of awareness and stigma have hindered uptake. To address this gap, we sought to develop and pilot test an electronic health record-based strategy among cisgender women in primary care. Our strategy, informed by prior work, identified cisgender women in primary care who might benefit from PrEP, provided them with person-centered PrEP educational materials via the patient portal, and offered an opportunity to electronically request a dedicated PrEP visit with a PrEP champion – a female primary care physician – if desired. We conducted two sequential patient-randomized pilot studies to test: (1) the efficacy of the materials compared to usual care, and (2) the preliminary effectiveness of our strategy compared to usual care. The primary outcomes for the efficacy study included PrEP knowledge and PrEP stigma, while the primary outcome for the preliminary effectiveness study was PrEP uptake over a three-month period. In total, we enrolled 200 women. The efficacy study (n = 100, n = 50 per arm) revealed our PrEP educational materials significantly increased PrEP knowledge scores among women who were directly shown the materials, compared to those who were not (9.4 (standard deviation (SD) 0.9) vs. 5.8 (SD 1.8) out of 10, p-value < 0.01, respectively). However, the preliminary effectiveness study (n = 100, n = 50 per arm) resulted in no significant differences, other than PrEP awareness, between women randomized to our strategy and those randomized to usual care. PrEP educational materials have the potential to increase PrEP knowledge among cisgender women. For the patient portal to be an effective delivery channel, additional support efforts should be considered. The study was registered at ClinicalTrials.Gov, Clinical Trial number NCT05709860 registered on 2023-01-17.
Undiagnosed obstructive Sleep Apnea (OSA) is prevalent among older adults and poses health risks. The feasibility and effectiveness of routine OSA screening in primary care remain underexplored. We developed and pilot-tested an electronic health record (EHR)-embedded OSA screening strategy across 10 primary care clinics within a large health system (9/6/2023-6/30/2024). Patients aged 65+ without prior OSA diagnosis were invited to complete an OSA screener (‘STOP’) via patient portal before Medicare Annual Wellness Visits. Screening results and next-step recommendations were auto-populated in the EHR for clinician review. Fidelity data were extracted from EHR through 12/16/2024 to allow sleep study completion. Acceptability, feasibility, and implementation barriers were examined via semi-structured interviews (21 high-risk patients and 7 clinicians), supplemented by a clinician close-out survey. Of 1105 eligible patients, 48.1% (n=532; age 73.5±6.1; 49.4% female; 86.3% non-Hispanic White; BMI 27.3±5.2) completed the screener, with 30.1% (n=160/532) identified as high-risk for OSA. High-risk patients had higher BMI (28.2 [IQR 25.1-31.7] vs. 26.4 [23.6-29.2], p< 0.001) and more comorbidities (4 [3-6] vs. 3 [2-5], p< 0.001) than low-risk patients. Sleep studies were ordered for 35.6% (n=57/160) of high-risk patients, with 52.6% (30/57) completing them at a median of 60 days (range: 8-153). Clinicians reported consistently discussing screening results but cited patient refusal as the main barrier to ordering studies. Barriers for patients included limited awareness of OSA significance and misconceptions about diagnostic procedures and treatments. Among patients who completed sleep studies, 76.7% (n=23/30) received new diagnoses, including OSA (n=20 overall; n=10 moderate-to-severe), periodic limb movement disorder (n=4), and non-obstructive hypoxia (n=3). Treatment recommendations included specialty referral (n=20), positive airway pressure therapy (n=13), and positional therapy (n=3). Overall, 14.4% of high-risk patients (n=23/160) and 4.3% of all screened patients (n=23/532) received new diagnoses prompting clinical intervention. Both clinicians and patients reported minimal burden from the process. An EHR-integrated OSA screening strategy for older adults was feasible in primary care, diagnosing one OSA case per 27 patients screened. Future studies should focus on strategies to promote screening among non-portal users and to improve patient education about the health impacts, diagnostic procedures, and treatment options of OSA. P30AG059988, K23AG088497-01
Background Older adults with HIV are at increased risk of developing certain chronic health conditions including type 2 diabetes mellitus (T2DM). As the number and complexity of conditions increases, so do treatment and health care needs. We explored patient and clinician preferences for HIV+T2DM care and perceived solutions to improving care. Methods We conducted an exploratory qualitative study comprised of individual in-depth interviews. Participants included English-speaking patients aged 50 and older living with HIV and T2DM and infectious disease (ID) and primary care (PC) clinicians from a large academic health center in Chicago. Thematic analysis drew from the Framework Method. Results A total of 19 patient and 10 clinician participants were interviewed. Many patients reported seeking HIV and T2DM care from the same clinician; they valued rapport and a ‘one-stop-shop’. Others reported having separate clinicians; they valued perceived expertise and specialty care. Nearly all clinicians reported comfort screening for T2DM and initiating first line oral therapy; ID clinicians reported placing referrals for newer, complex therapies. Patients would like educational support for T2DM management; clinicians would like to learn more about newer therapies and easier referral processes. Conclusions Patient-centered care includes managing T2DM from a variety of clinical settings for individuals with HIV, yet strategies are needed to better support clinicians. Future research should examine how best to implement these strategies.
BackgroundOlder adults with multiple chronic conditions (MCC) and polypharmacy often face challenges with medication adherence. Nonadherence can lead to suboptimal treatment outcomes, adverse drug events, and poor quality of life. ObjectiveTo facilitate medication adherence among older adults with MCC and polypharmacy in primary care, we are adapting a technology-enabled intervention previously implemented in a specialty clinic. The objective of this study was to obtain multilevel feedback to inform the adaptation of the proposed intervention (Phenotyping Adherence Through Technology-Enabled Reports and Navigation [PATTERN]). MethodsWe conducted a formative qualitative study among patients, clinicians, and clinic administrators affiliated with a large academic health center in Chicago, Illinois. Patient eligibility included being aged 65 years or older, living with MCC, and contending with polypharmacy. Eligibility criteria for clinicians and administrators included being employed by any primary care clinic affiliated with the participating health center. Individual semistructured interviews were conducted remotely by a trained member of the study team using interview guides informed by the Exploration, Preparation, Implementation, and Sustainment Framework. Thematic analysis of interview audio recordings drew from the Rapid Identification of Themes from Audio Recordings procedures. ResultsIn total, we conducted 25 interviews, including 12 with clinicians and administrators, and 13 with patients. Thematic analysis revealed participants largely found the idea of technology-based medication adherence monitoring to be acceptable and appropriate for the target population in primary care, although several concerns were raised; we discuss these in detail. ConclusionsOur medication adherence monitoring intervention, adapted from specialty care, will be implemented in primary care. Formative interviews, informed by the Exploration, Preparation, Implementation, and Sustainment Framework and conducted among patients, clinicians, and administrators, have identified intervention adaptation needs. Results from this study could inform other interventions using the patient portal with older adults.
Telehealth applications such as Video-over-IP and remote sensor monitoring are rapidly growing in utilisation and it has now expanded to the patient's homes. These Telehealth applications are, however highly delay sensitive and require high quality (and bandwidth priority) in order to provide satisfactory performances. However, at the patient's home area network (HAN) environment, typically there is no Internet traffic management system which highly affects the quality of these applications. As HAN expands its capacity by adding new devices in its network, the need for a network management system become urgent and necessary. In this study, we propose an infrastructure based method to improve Telehealth application quality by managing the quality and distribution of the Internet traffic among the connected devices in a HAN environment. We setup a HAN environment using existing devices readily available at home and tested the setting with typical Telehealth application needs that includes Video-over-IP, VoIP, data and other multimedia traffic. Our simulation results showed that our method is capable of providing better services. Our method indicated that it can provide ~11% lesser packet-loss under 12Mbps background traffic, while increasing 10% of the CPU load for Traffic management.
Introduction Women with type 2 diabetes (T2DM) are more likely to experience adverse reproductive outcomes, yet preconception care can significantly reduce these risks. For women with T2DM, preconception care includes reproductive planning and patient education on: (1) the importance of achieving glycaemic control before pregnancy, (2) using effective contraception until pregnancy is desired, (3) discontinuing teratogenic medications if pregnancy could occur, (4) taking folic acid, and (5) managing cardiovascular and other risks. Despite its importance, few women with T2DM receive recommended preconception care.Methods and analysis We are conducting a two-arm, clinic-randomised trial at 51 primary care practices in Chicago, Illinois to evaluate a technology-based strategy to ‘hardwire’ preconception care for women of reproductive age with T2DM (the PREPARED (Promoting REproductive Planning And REadiness in Diabetes) strategy) versus usual care. PREPARED leverages electronic health record (EHR) technology before and during primary care visits to: (1) promote medication safety, (2) prompt preconception counselling and reproductive planning, and (3) deliver patient-friendly educational tools to reinforce counselling. Post-visit, text messaging is used to: (4) encourage healthy lifestyle behaviours. English and Spanish-speaking women, aged 18–44 years, with T2DM will be enrolled (N=840; n=420 per arm) and will receive either PREPARED or usual care based on their clinic’s assignment. Data will be collected from patient interviews and the EHR. Outcomes include haemoglobin A1c (primary), reproductive knowledge and self-management behaviours. We will use generalised linear mixed-effects models (GLMMs) to evaluate the impact of PREPARED on these outcomes. GLMMs will include a fixed effect for treatment assignment (PREPARED vs usual care) and random clinic effects.Ethics and dissemination This study was approved by the Northwestern University Institutional Review Board (STU00214604). Study results will be published in journals with summaries shared online and with participants upon request.Trial registration number ClinicalTrials.gov Registry (NCT04976881).
Objective: To investigate well-being, lifestyle behaviors, self-management capacity and healthcare utilization among adults with chronic conditions at the outbreak of the COVID-19 pandemic. Methods: Data was collected from two interviewer-administered telephone surveys conducted between March 27-May 22, 2020. Participants were patients at Chicago-area clinics. Self-report and validated measures were used for study-related outcomes. Results: A total of 553 participants (age range 23-88) completed data collection at both timepoints. One in five (20.7%) participants experienced stress due to the coronavirus most or all the time and rates of negative well-being were high (WHO-5 Index mean = 58.7%). Almost a quarter (22.3%) engaged in hazardous drinking and 79.7% reported insufficient physical activity. Nearly one in four participants (23.7%) avoided seeking medical care due to worry about COVID-19. In multivariable analyses, greater COVID-19 related stress was associated with less physical activity, lower self-efficacy, greater difficulty managing health and medications, and delays in seeking medical care due to the coronavirus. Conclusions: Mental well-being, lifestyle behaviors, self-management capacity, and healthcare utilization were impacted in the months following the COVID outbreak. Innovation: These findings suggest health systems should implement proactive measures for detecting and treating emotional and behavioral COVID-related concerns.
Introduction COVID-19 is an unprecedented public health threat in modern times, especially for older adults or those with chronic illness. Beyond the threat of infection, the pandemic may also have longer-term impacts on mental and physical health. The COVID-19 & Chronic Conditions (‘C3’) study offers a unique opportunity to assess psychosocial and health/healthcare trajectories over 5 years among a diverse cohort of adults with comorbidities well-characterised from before the pandemic, at its onset, through multiple surges, vaccine rollouts and through the gradual easing of restrictions as society slowly returns to ‘normal’.Methods and analysis The C3 study is an extension of an ongoing longitudinal cohort study of ‘high-risk’ adults (aged 23–88 at baseline) with one or more chronic medical conditions during the COVID-19 pandemic. Five active studies with uniform data collection prior to COVID-19 were leveraged to establish the C3 cohort; 673 adults in Chicago were interviewed during the first week of the outbreak. The C3 cohort has since expanded to include 1044 participants across eight survey waves (T1–T8). Four additional survey waves (T9–T12) will be conducted via telephone interviews spaced 1 year apart and supplemented by electronic health record and pharmacy fill data, for a total of 5 years of data post pandemic onset. Measurement will include COVID-19-related attitudes/behaviours, mental health, social behaviour, lifestyle/health behaviours, healthcare use, chronic disease self-management and health outcomes. Mental health trajectories and associations with health behaviours/outcomes will be examined in a series of latent group and mixed effects modelling, while also examining mediating and moderating factors.Ethics and dissemination This study was approved by Northwestern University’s Feinberg School of Medicine Institutional Review Board (STU00215360). Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study.