Scheduled Clinic Appointments Research Articles

Deferring diagnostic evaluation of suspected deep vein thrombosis using direct oral anticoagulant or low-molecular-weight heparin as a single dose anticoagulant: A prospective real-world study in a regionwide care pathway

BackgroundPatients with suspected deep vein thrombosis (DVT) are typically referred to the emergency department for immediate evaluation. To enhance efficiency, our hospital implemented a regional, general practitioner (GP)-driven DVT care pathway, deferring diagnostic evaluation to a scheduled outpatient DVT clinic appointment the following day. Patients receive a single dose anticoagulant from their GP to prevent thrombosis progression while awaiting diagnostic workup. This prospective study aimed to evaluate the safety and patient preferences regarding the DVT care pathway and the type of single dose anticoagulant (low-molecular-weight heparin (LMWH) vs. direct oral anticoagulant (DOAC)). MethodsPatients enrolled in the DVT care pathway between June 2021 and July 2023 were eligible. Until July 2022, LMWH was administered, and thereafter, the protocol recommended DOAC as the single dose anticoagulant. Patients completed questionnaires, incorporating patient-reported outcome and experience measures (PROMs/PREMs), during their DVT clinic visit and after five days. The primary endpoint was bleeding events within 72 h of receiving the single dose anticoagulant. ResultsOf 460 included patients, 229 received LMWH and 231 received DOAC as the single dose anticoagulant. DVT was confirmed in 24.8 % of patients. No major or clinically relevant non-major bleeding were reported. LMWH was associated with more minor bleedings (22.3 % vs. DOAC 13.4 %), primarily attributed to injection site hematomas. Patients reported high satisfaction with the DVT care pathway (96.5 %) and generally preferred DOAC over LMWH. ConclusionDeferring diagnostic evaluation for DVT using a single dose of either LMWH or DOAC in a real-world population is deemed safe. Considering practical advantages, patient preferences, and fewer skin hematomas, we favor DOACs as the single dose anticoagulant in this care pathway.

Urine tenofovir testing for real-time PrEP adherence feedback: a qualitative study involving transgender women in Uganda.

Adherence counselling with point-of-care (POC) drug-level feedback using a novel tenofovir assay may support pre-exposure prophylaxis (PrEP) adherence; however, perceptions of urine testing and its impact on adherence are not well studied. We qualitatively examined how POC tenofovir testing was experienced by transgender women (TGW) in Uganda. Within a cluster randomized trial of peer-delivered HIV self-testing, self-sampling for sexually transmitted infections and PrEP among HIV-negative TGW showing overall low PrEP prevention-effective adherence (NCT04328025), we conducted a nested qualitative sub-study of the urine POC assay among a random sample of 30 TGW (August 2021-February 2022). TGW interviews explored: (1) experiences with POC urine tenofovir testing and (2) perceptions of PrEP adherence counselling with drug-level feedback. We used an inductive content analytic approach for analysis. Median age was 21 years (interquartile range 20-24), and 70% engaged in sex work. Four content categories describe how TGW experienced POC urine tenofovir testing: (1) Urine tenofovir testing was initially met with scepticism: Testing urine to detect PrEP initially induced anxiety, with some perceptions of being intrusive and unwarranted. With counselling, however, participants found POC testing acceptable and beneficial. (2) Alignment of urine test results and adherence behaviours: Drug-level feedback aligned with what TGW knew about their adherence. Concurrence between pill taking and tenofovir detection in urine reinforced confidence in test accuracy. (3) Interpretation of urine tenofovir results: TGW familiar with the interpretation of oral-fluid HIV self-tests knew that two lines on the test device signified positivity (presence of HIV). However, two lines on the urine test strip indicated a positive result for non-adherence (absence of tenofovir), causing confusion. Research nurses explained the difference in test interpretation to participants' satisfaction. (4) White coat dosing: Some TGW deliberately chose not to attend scheduled clinic appointments to avoid detecting their PrEP non-adherence during urine testing. They restarted PrEP before returning to clinic, a behaviour called "white coat dosing." Incorporating POC urine testing into routine PrEP adherence counselling was acceptable and potentially beneficial for TGW but required attention to context. Additional research is needed to identify effective strategies for optimizing adherence monitoring and counselling for this population.

Strategies to Increase Cervical Cancer Screening With Mailed Human Papillomavirus Self-Sampling Kits: A Randomized Clinical Trial

ABSTRACT In the United States, adherence for cervical cancer screening decreased from 86% to 77% between 2005 and 2019. Over 50% of cervical cancers are diagnosed in individuals overdue for screening, and promoting access and adherence is essential. Unlike traditional Papanicolaou testing, human papillomavirus (HPV) screening can use self-collected samples, which have comparable sensitivity and specificity to clinician-collected samples. Self-collecting has been shown to increase screening adherence, possibly by circumventing important barriers such as scheduling clinic appointments and negativity about pelvic examinations. Despite this, most individuals in prior studies remained unscreened with low follow-up of HPV-positive results, and kit uptake among populations that are screening adherent or have unknown screening history is unknown. The STEP trial (self-testing options in the era for primary HPV screening for cervical cancer) was a parallel, single-blind, randomized clinical trial comparing cervical cancer screening completion across groups of individuals with due (screening-adherent), overdue, or unknown screening history. Participants were randomized to traditional care (patient reminders and clinician electronic health record [HER] alerts), education (usual care plus educational materials about screening), direct mail (traditional care plus educational materials plus a mailed HPV self-collection kit), or to opt in (traditional care plus educational materials plus the option to request a self-collection kit). Patients were identified using the Kaiser Permanente Washington HER and administrative claims. Eligible participants were females aged 30 to 64 years with current Kaiser Permanente Washington insurance and primary care, intact cervix, who were either due or overdue for screening. The primary study outcome was screening completion within 6 months after randomization, which could be done either in clinic or using the self-collection kit. Modified Poisson regression was used to estimate relative risk (RR) of screening completion for the direct-mail and opt-in groups, relative to the education group. A total of 32,771 participants were randomized between November 2020 and January 2022, of which 13,356 were due for screening, 8682 were overdue, and 10,733 had unknown screening history. Of those due for screening, the RR for screening completion was 1.30 (95% confidence interval [CI], 1.23–1.36; absolute difference, 14.1% [95% CI, 11.2%–16.9%]) for direct mail and 1.07 (95% CI, 1.02–1.12; absolute difference, 3.5% [95% CI, 1.2%–5.7%]) for the opt-in group compared with education. Of those overdue for screening, the RR for screening completion was 1.90 (95% CI, 1.68–2.16; absolute difference 16.9% [95% CI, 13.8%–20.0%]) for direct mail compared with education. Of those with unknown screening history, the RR for screening completion was 1.14 (95% CI, 1.03–1.25; absolute difference 2.2% [95% CI, 0.5%–3.9%]) for the opt-in group compared with education. The results of this randomized controlled trial showed that directly mailing HPV self-collection kits increased cervical cancer screening by over 14% compared with education alone. The effect was similar between participants that were due or overdue for screening, and an opt-in approach was found to minimally increase screening.

The Prevalence and Severity of Acquired Blepharoptosis in US Eye Care Clinic Patients and Their Receptivity to Treatment.

To assess the presence and severity of acquired blepharoptosis (ptosis) among patients visiting an eye care clinic and the receptivity of eligible patients to pharmacologic treatment with oxymetazoline 0.1% ophthalmic solution. Patients aged 50 years or older who had a scheduled clinic appointment for any reason (eg, dry eye, cataract surgery consultation) were asked to respond to written questions about lid position and select whether their upper lid position most closely matched one of 4 images shown to them corresponding to no, mild, moderate, or severe ptosis. Patients selecting any of the mild, moderate, or severe ptosis were offered treatment with oxymetazoline 0.1% ophthalmic solution, barring any medical contraindications. The outcome measures were the proportion of patients with each self-reported lid position level (none to severe ptosis), the proportion of patients with asymmetric ptosis, and the proportion of patients willing to accept the treatment. Data for 188 eyes of 94 patients were analyzed. Overall, 73.4% of patients had ptosis in at least one eye, and 25.5% had an asymmetric upper eyelid presentation. The proportions of patients with self-reported mild, moderate, or severe ptosis in at least one eye were 41.5%, 25.5%, and 6.4%, respectively. Among those patients eligible for treatment, 19.7% were willing to accept the treatment. Based on patients' self-assessment of lid position, this study suggests a higher prevalence of ptosis than reported previously. Evaluation of the eyelids should be a standard part of the comprehensive eye examination.

More Tethered to the EHR: EHR Workload Trends Among Academic Primary Care Physicians, 2019-2023.

The purpose of this study is to evaluate recent trends in primary care physician (PCP) electronic health record (EHR) workload. This longitudinal study observed the EHR use of 141 academic PCPs over 4 years (May 2019 to March 2023). Ambulatory full-time equivalency (aFTE), visit volume, and panel size were evaluated. Electronic health record time and inbox message volume were measured per 8 hours of scheduled clinic appointments. From the pre-COVID-19 pandemic year (May 2019 to February 2020) to the most recent study year (April 2022 to March 2023), the average time PCPs spent in the EHR per 8 hours of scheduled clinic appointments increased (+28.4 minutes, 7.8%), as did time in orders (+23.1 minutes, 58.9%), inbox (+14.0 minutes, 24.4%), chart review (+7.2 minutes, 13.0%), notes (+2.9 minutes, 2.3%), outside scheduled hours on days with scheduled appointments (+6.4 minutes, 8.2%), and on unscheduled days (+13.6 minutes, 19.9%). Primary care physicians received more patient medical advice requests (+5.4 messages, 55.5%) and prescription messages (+2.3, 19.5%) per 8 hours of scheduled clinic appointments, but fewer patient calls (-2.8, -10.5%) and results messages (-0.3, -2.7%). While total time in the EHR continued to increase in the final study year (+7.7 minutes, 2.0%), inbox time decreased slightly from the year prior (-2.2 minutes, -3.0%). Primary care physicians' average aFTE decreased 5.2% from 0.66 to 0.63 over 4 years. Primary care physicians' time in the EHR continues to grow. While PCPs' inbox time may be stabilizing, it is still substantially higher than pre-pandemic levels. It is imperative health systems develop strategies to change the EHR workload trajectory to minimize PCPs' occupational stress and mitigate unnecessary reductions in effective physician workforce resulting from the increased EHR burden.

A systematic review of the effectiveness of patient-initiated follow-up after cancer.

The traditional cancer follow-up (FU) model for cancer survivors is by scheduled clinic appointments; however, this is not tailored to patient needs and is becoming unsustainable. Patient-initiated follow-up (PIFU) may be a more effective and flexible alternative. This systematic review aims to analyse all existing evidence from randomised controlled trials (RCTs) on the effectiveness of PIFU compared with other FU models that include routinely scheduled appointments in adults who have been treated with curative intent for any type of cancer. Standard systematic review methodology aimed at limiting bias was used for study identification, selection and data extraction. MEDLINE, Embase, CINAHL, the Cochrane Database of Systematic Reviews and Epistemonikos were searched for systematic reviews to March 2022, and Cochrane CENTRAL was searched for RCTs from 2018 (April 2023). Ongoing trial registers were searched (WHO ICTRP, ClinicalTrials.gov, April 2023). Eligible studies were randomised controlled trials comparing PIFU with an alternative FU model in adult cancer survivors. Risk of bias assessment was via the Cochrane risk of bias tool-2. Meta-analysis was precluded by clinical heterogeneity and results were reported narratively. Ten RCTs were included (six breast, two colorectal, one endometrial cancer and one melanoma, total n = 1754); all studies had risk of bias concerns, particularly relating to how missing data were handled, and populations were unlikely to be representative. Limited findings in breast cancer suggested that type of FU does not affect recurrence detection or patient-related outcomes, while PIFU may reduce the number of clinic visits. Adding patient-led surveillance to routine FU may increase melanoma detection. Evidence for other types of cancer is too limited to draw firm conclusions. PIFU may be a viable FU model in breast cancer, but further research is needed for other types of cancer and on long-term outcomes. A protocol was registered with PROSPERO (CRD42020181424).

P353 Impact of the withdrawal of CFTR modulator prescriptions on clinic attendance

Highly effective modulator therapy (HEMT) has revolutionised CF care. In response to improved health there has been anecdotal reports that people with CF (pwCF) are missing more scheduled clinic appointments than when HEMT was not available. In response to this we updated our did not attend appointment (DNA) policy so that if a pwCF fails to attend 2 sequential appointments without prior notice a final letter is sent stating HEMT supplies have been put on hold until they arrange and attend a clinic appointment. Here we assess the impact of this updated policy on those who missed 2 appointments in a row without prior warning.

Loss to Follow Up and Missing Clinical Information, a Challenge of Hiv Management Care In A Developing Country; a 14-Year Retrospective Analysis

Background: HIV/AIDS, a transmissible and deadly disease is now a chronic manageable disease. However, loss to follow-up (LTFU) is threatening its manageability by increasing the risk of drug resistance and transmission of resistant strains. Missing critical client information may not be random but predictive of LTFU. The study aims to determine the period prevalence, incidence rates, patterns, predictors and the predictive relationship of missing clinical information with LTFU in an HIV Treatment Program in a developing country. Methods: A 14-year retrospective analysis was conducted on routinely collected data validated using the Retention and Audit Determination Tool (RADET) from adult HIV clients who initiated treatment from 2008 to 2021 in the HIV treatment centre of Imo State University Teaching Hospital, Nigeria. LTFU was established when a client had not been seen at the clinic for at least 90 days after the last missed scheduled clinic appointment. Kaplan Meier (KM) curves, log-rank test and Cox proportional hazards regression analyses were used to determine the distributions of LTFU and predictors with the level of significance set at p≤ 0.05. Results: The 14-year period prevalence was 39.4% with an incidence rate of 13 new cases of loss to follow-up per 100 HIV clients per year. The majority of the HIV clients (59.3%) had at least one critical missing file information. LTFU were significantly more likely to occur in those aged less than 45 years old (aHR:1.38, p<0.001) who are males (aHR: 1.19, p=0.006), suspected or diagnosed with TB (aHR: 7.78, p<0.001) and weighing 70kg or less (aHR:1.79, p<0.001). Missing viral load information (aHR: 51.37 p<0.001) and missing HAART regimen line information (aHR: 8.44, p<0.001) were the most predictive of LTFU in the model. Conclusion: Though LTFU in HIV patients linked to treatment, appears to be reducing, it is still a significant threat in the management of HIV disease. Further reduction in LTFU could be achieved by institutionalizing biometric capture, improving HIV/TB services and training staff in HIV-enhanced adherence counselling services.

The effect of a mobile health App on treatment adherence and revenue at physical health clinics: a retrospective record review.

A significant proportion of patients do not adhere to their prescribed course of physical therapy or self-discharge themselves from care. Adhering to prescribed physical therapy, including attending physical therapy clinic appointments, contribute to patients achieving the goals of therapy including reducing pain and increasing functioning. Online platforms have been demonstrated to be effective means for managing clinical patients with musculoskeletal pain similar to managing them in person. Behavioral change techniques introduced through digital or online platforms can reduce nonadherence with prescribed physical therapy and improve patient outcomes. The literature also indicates that a phone-based App provided to patients that includes a reward incentive gamification to complement their care contributed to a greater number of kept appointments in a physical therapy clinic. The purpose of this study was to compare the rate of provider-discharge with self-discharge and the number of clinic visits among patients attending a physical health clinic who did and did not choose to adopt a phone-based App to complement their care. A secondary purpose was to compare the revenue generated by patients attending a physical health clinic who did and did not choose to adopt a phone-based App to complement their care. A retrospective analysis of all new outpatient medical records (n=5,328) from a multisite physical health practice were evaluated between January 2018 to December 2019. Patients in the sample self-selected into the 2018 Usual Care Group, the 2019 Usual Care Group and the 2019 Kanvas App Group who downloaded the Kanvas App. Kanvas is a customized private practice App, designed for patient engagement with their specific health care provider. This App included a gamification system that provided rewards to the patient for attending their scheduled clinic appointments. According to their medical record each patient was classified as completing prescribed therapy (Provider-Discharged) or not completing their prescribed therapy (Self-Discharged). Also, extracted from each patient's medical record were the total number of clinic visits each patient attended, the total charges for services and the total payments received by the clinic per patient. Patients in the 2019 Kanvas App Group exhibited a higher rate of provider-discharge compared to the patients who did not adopt the App. This greater rate of provider-discharges among the patients who adopted the Kanvas App likely contributed to this group attending more clinic visits (13.21+12.09) than the other study groups who did not download the App (10.72+9.80 - 11.35+11.10). This greater number of clinic visits in turn contributed to the patients who adopted the App generating more clinic charges and payments. Future investigators need to employ more rigorous methods to confirm these findings and healthcare providers need to weigh the anticipated benefits against the cost and staff involvement in managing the Kanvas App.

Comparative assessment of treatment efficiency and patient experience between Dental Monitoring and conventional monitoring of clear aligner therapy: A single-center randomized controlled trial

This 2-arm randomized controlled clinical trial (RCT) aimed to assess the effect of Dental Monitoring (DM) on the efficiency of clear aligner therapy (CAT) and patient experience compared with conventional monitoring (CM) used for regularly scheduled clinical appointments. Fifty-six patients with full permanent dentition treated with CAT participated in this RCT. Patients were recruited from a single private practice and treated by 1 experienced orthodontist. Randomization was performed with permutated blocks of 8 patients assigned to either a CM or DM group with allocations concealed in opaque, sealed envelopes. It was not feasible to blind subjects or investigators. The primary treatment efficiency outcome assessed was the number of appointments. Secondary outcomes included the time to reach the first refinement, the number of refinements, the total number of aligners, and treatment duration. The patient experience was assessed using a visual analog scale questionnaire administered at the end of CAT. No patients were lost to follow-up. There was no significant difference in the number of refinements (mean= 0.1; 95% confidence interval [CI], -0.2 to 0.5; P= 0.43) and the number of total aligners (median= 5; 95% CI, -1 to 13; P= 0.09). There was a significant difference in the number of appointments, with the DM group requiring 1.5 fewer visits (95% CI, -3.3, -0.7; p= 0.02) as well as overall treatment duration, with the DM group taking 1.9 months longer (95% CI, 0.0-3.6; P= 0.04). There was a difference between study groups regarding the importance of face-to-face appointments, with the DM group not perceiving face-to-face appointments as important (P= 0.03). DM with CAT resulted in 1.5 fewer clinical appointments and a longer treatment duration of 1.9 months. There were no significant intergroup differences in the number of refinements or total aligners. CM and DM groups had similarly high levels of satisfaction with CAT. The trial was registered at Australian New Zealand Clinical Trials Registry (ACTRN12620000475943). The protocol was published before trial commencement. This research did not receive any grant from funding agencies.

Use of a Screening Protocol to Identify Asymptomatic COVID-19 in a Free Community Health Clinic in Shelby County, Alabama, October 2020-February 2021.

Community of Hope Health Clinic (CHHC), a free and charitable clinic in Shelby County, Alabama, developed a screening protocol to identify patients with asymptomatic COVID-19 with the goal of minimizing infection risk for other patients, health care providers, and staff. We sought to determine whether the use of the CHHC screening protocol identified asymptomatic carriers of SARS-CoV-2 before their scheduled clinic visits. The CHHC screening protocol included the use of an adapted Centers for Disease Control and Prevention questionnaire via telephone 48-72 hours before a scheduled clinic appointment, coupled with a second administration of the questionnaire and a temperature check immediately before the patient's scheduled visit. Patients with positive responses to any questions or whose temperatures were greater than 100.4 °F were refused entry to the clinic, their appointments were rescheduled, and a SARS-CoV-2 test was recommended. SARS-CoV-2 laboratory testing was conducted on all patients with an appointment from October 26, 2020, through February 18, 2021, to verify whether the screening protocol was effective. Of 298 patient encounters, 20 patients screened positive on the SARS-CoV-2 patient screen. Another 278 patients screened negative, were seen for patient care, and received a SARS-CoV-2 test via nasal swab; 274 (98.6%) patients received a negative test result, and 4 (1.4%) patients received a positive test result. The CHHC SARS-CoV-2 screening protocol, as validated by SARS-CoV-2 assay, was effective in screening out asymptomatic patients infected with SARS-CoV-2 before they were seen in clinic. As clinics and office practices return to prepandemic volumes, the use of such a screening protocol can help mitigate the risk of serious COVID-19 infection, especially for unvaccinated patients, health care providers, and staff.

Factors Contributing To Clinic No-Show at a Safety Net Hospital

Appointment no-show refers to patient nonattendance to previously scheduled clinic or surgical appointments without canceling the appointment in advance. No-shows have been an ongoing issue nationally and incur significant strains on the healthcare system, while negatively impacting health outcomes. Furthermore, when no-shows occur in an academic institution, they can lead to fewer educational opportunities for healthcare trainees such as medical students and residents. Prior studies have demonstrated variable no-show rates depending on the location and the type of healthcare setting, with rates range between 15% and 30% in general medicine clinics and urban community centers. In academic otolaryngology clinics, the no-show rate has been estimated to be around 8.3% [5].

Posttraumatic stress disorder hyperarousal event detection using smartwatch physiological and activity data.

Posttraumatic Stress Disorder (PTSD) is a psychiatric condition affecting nearly a quarter of the United States war veterans who return from war zones. Treatment for PTSD typically consists of a combination of in-session therapy and medication. However; patients often experience their most severe PTSD symptoms outside of therapy sessions. Mobile health applications may address this gap, but their effectiveness is limited by the current gap in continuous monitoring and detection capabilities enabling timely intervention. The goal of this article is to develop a novel method to detect hyperarousal events using physiological and activity-based machine learning algorithms. Physiological data including heart rate and body acceleration as well as self-reported hyperarousal events were collected using a tool developed for commercial off-the-shelf wearable devices from 99 United States veterans diagnosed with PTSD over several days. The data were used to develop four machine learning algorithms: Random Forest, Support Vector Machine, Logistic Regression and XGBoost. The XGBoost model had the best performance in detecting onset of PTSD symptoms with over 83% accuracy and an AUC of 0.70. Post-hoc SHapley Additive exPlanations (SHAP) additive explanation analysis showed that algorithm predictions were correlated with average heart rate, minimum heart rate and average body acceleration. Findings show promise in detecting onset of PTSD symptoms which could be the basis for developing remote and continuous monitoring systems for PTSD. Such systems may address a vital gap in just-in-time interventions for PTSD self-management outside of scheduled clinical appointments.

Abstract P4-12-06: A patient experience model of diagnosis of pregnancy associated breast cancer (PABC)

Abstract Breast cancer is the most prevalent malignancy in pregnancy. Pregnancy-associated breast cancer (PABC), defined here as cancer detected during pregnancy or in the first year after miscarriage or delivery, accounts for nearly 7% of breast cancers in women under 45 years of age. This rate nearly doubles among women under 35. While there is increasing attention to the pathology of PABC, little is known about the pathways to diagnosis, how these young women navigate these pathways, and the barriers resulting in delays. Methods We conducted a qualitative study of young breast cancer survivors (YBCS) under age 45 to explore their paths to diagnosis. We administered a 52-item online survey to a convenience sample of YBCS (n=163), including open-ended questions about diagnosis experience and multiple-choice and short answer questions on demographics and disease status. This analysis focuses on the subset of women diagnosed with PABC (n=26). Data were analyzed using qualitative methods of content analysis. Results Our analysis generated a patient-experience model of YBCS diagnosis comprised of four phases: discovery, exploration, investigation, and confirmation. In discovery, women with PABC often delayed seeking care, attributing breast changes to pregnancy or breastfeeding and waiting to explore symptoms until their next scheduled clinic appointment. Participants also reported delays following discovery due to availability of newborn/child-care or insurance issues. In exploration, women with PABC frequently relied on their regular healthcare provider to assess their symptoms. They reported that providers often expressed confidence that symptoms were due to pregnancy or breastfeeding and did not recommend further investigation until symptoms worsened. Women with PABC generally demonstrated trust in providers’ assessments of symptoms, with limited evidence to suggest that respondents requested more aggressive or timely evaluation. In investigation, women with PABC reported that when symptoms progressed, the pace of the diagnostic process shifted, moving quickly with few delays or barriers, and rapid scheduling for diagnostic testing and follow-up managed by the healthcare provider. This rapid pace continued through confirmation, when respondents noted prompt, short intervals between diagnostics and intensive activities in preparation for treatment. Women with PABC also noted they often received referrals for mental health support as part of the diagnosis process. While participants reported frequent reliance on their partner, mother, and mother-in-law for support, they often experienced isolation due to the time and effort required to care for a newborn during preparation for breast cancer treatment. Conclusions This patient-experience model of pregnancy associated breast cancer diagnosis in young women documents the timing and nature of delays, including the phases where delays occur most frequently, and can help inform the development and evaluation of targeted interventions to improve timely care. Delays experienced in the discovery and exploration phases are often due to the attribution of symptoms to pregnancy or breastfeeding by both patients and possibly their healthcare providers. The intensity and pace of the diagnostic process shifts notably when symptoms progress, with healthcare providers taking an active role to ensure rapid diagnosis and treatment planning. The model identifies opportunities for health care systems to address barriers and facilitators to the diagnostic process for PABC and improve quality of care across all phases. A detailed understanding of the PABC patient experience identifies opportunities to reduce barriers to care, facilitate timely diagnosis, and provide a roadmap to support the unique needs of young women undergoing an evaluation for breast cancer while pregnant or postpartum. Citation Format: Tamara Hamlish, Sarah Strom, Pamela Ganschow. A patient experience model of diagnosis of pregnancy associated breast cancer (PABC) [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-12-06.

Affect and psychological well-being in spouses of cancer patients: the mediating role of meaning in life and self-efficacy

The examination of the psychological functioning of cancer patients’ spouses implies that affect and personal resources play an important role in their psychological well-being. This is a consequence of the severe stress caused by the medical conditions of a spouse and of responsibilities related to caregiving. This study aimed to examine the role of affect and purpose-oriented personal resources (meaning in life and self-efficacy) in shaping psychological well-being in the spouses of cancer patients. The participants were 214 spouses of gastrointestinal patients who were either undergoing medical treatment in hospital units or attending scheduled clinic appointments at outpatient medical clinics. The Positive and Negative Affect Schedule (PANAS-X), Psychological Well-Being Scale (PWB), Meaning in Life Questionnaire (MLQ), and General Self-Efficacy Scale (GSES) were used. The results indicated that positive affect was positively correlated with meaning in life, self-efficacy, and psychological well-being. In contrast, negative affect was negatively correlated with positive affect, meaning in life, self-efficacy, and psychological well-being. The mediation analyses demonstrated that meaning in life and self-efficacy were mediators between positive and negative affect and psychological well-being. The mediating function of meaning in life and self-efficacy revealed the significant role of personal resources based on purpose and self-motivation in the relationship between affect and psychological well-being. Positive and negative affect can influence motivational processes that enable patients and their families to constructively deal with challenging and illness-related situations. Caregivers and medical staff could take into account the important role of purpose-oriented resources as they affect the functioning of both patients and their families.

Improving Patient Education for Atopic Dermatitis: A Randomized Controlled Trial of a Caregiver Handbook

To evaluate if an educational handbook could improve atopic dermatitis (AD) symptoms, caregiver confidence in AD management skills, and AD-related quality of life.In the study, researchers included children ages 1 month to 16 years with AD and their caregivers who had scheduled new or follow-up clinic appointments for the evaluation and management of AD at Boston Children’s Hospital. Inclusion criteria consisted of AD diagnosis confirmed by the health care provider during a clinic visit and an English-speaking caregiver.A randomized nonblinded controlled trial that was stratified to handbook and control arm. In the handbook arm, participants received a handbook in addition to standard AD care, versus only standard care in the control arm. Furthermore, each clinical program from which the participants was recruited was a separate randomization block. These clinical programs included allergy, dermatology, the Atopic Dermatitis Center (an interdisciplinary specialty clinic for AD), and primary care. All caregivers completed a self-reported questionnaire at baseline and a 3-month follow-up. After the baseline visit, the participants in the handbook arm were given a handbook and told to read it as a tool to help manage the child’s AD. The symptoms associated with AD were measured by using the Patient-Oriented Eczema Measure (POEM). POEM scores range from 0 (clear; no eczema) to 28 (severe eczema).A total of 245 patients from the ages of 3 months to 16 years were randomly assigned in this study. Of the total 245 randomly assigned patients, 175 caregivers completed questionnaires and were included in the repeated-measure analysis. There were 91 caregivers in the handbook arm and 84 in the control arm. The patients lost to follow-up were more likely to be African American or Hispanic (P < .14). The adjusted mean POEM score (±SD) decreased from 12.1 ± 9.9 to 7.7 ± 8.7 (difference: −4.4 [95% confidence interval (CI): −5.7 to −3.0]) in the handbook arm and 12 ± 10 to 8.6 ± 8.8 in the control arm (difference: −3.4 [95% CI: −4.8 to −2.0]; P = .343). Confidence scores (P = .093), infant quality of life (P = .944), child quality of life scores (P = .114), and family impact scores (P = .933) were not significant between time and study arm. The adjusted mean confidence score among new patients increased from 67 (95% CI: 60 to 74) to 83 (95% CI: 77 to 88) in the handbook arm, compared with 74 (95% CI: 65 to 82) to 75 (95% CI: 67 to 83) in the control arm (P = .012). Most of the caregivers found the handbook to be helpful.The use of the handbook did not significantly improve AD symptoms, when compared with standard care alone. Nonetheless, caregivers did find the handbook useful, and it may be especially useful to families managing a new diagnosis of AD.As health care providers, we often look for new and innovative ways to improve the care for our patients. Although, in this study, researchers did not find a significant difference in symptom or quality of life outcomes versus standard management, it is not to say another or modified tool would not have the desired impact. Consequently, the analysis of educational resources among various study populations and diseases should continue in an effort to improve overall management and health outcomes.

Transitioning from Pediatric to Adult Care: The Role of an Education Curriculum for Adolescents and Young Adults with Sickle Cell Disease

Introduction: Sickle Cell Disease (SCD) is the most common inherited blood disorder, affecting over 100,000 people in the United States. The latest medical managements have yielded better outcomes in mortality and morbidity among people with SCD. Despite these advancements, emerging young adults have complications transitioning from pediatric care to adult care and remain with the highest mortality rate in the population. Got Transition is a federally funded national resource center that aims to support youth and young adults moving from pediatric to adult care by implementing the Six Core Elements of Transition. At our institution, we established a transition program aimed at improving clinical care, medical management, and improvement in the transition from pediatric to adult medical care. Our goal was to develop a standardized, age appropriate sickle cell education curriculum to implement at clinic visits for our patients aged 13 and older.Hypothesis: We hypothesize that with a structured transition curriculum, we would be able to improve patient knowledge in medical aspect of the disease, academic resources and a better understanding of their complex psychosocial needs.Methods: We developed a transition program called Adolescent and Young Adult Sickle Cell Uplift and Learn Program for Transition (AYA SCULPT) that would focus on patients starting at 13 years old with a multidisciplinary approach of care. We adopted the Got Transition model implementing the Six Core Elements of Transition. Our team not only wanted to address educational topics related to their medical care, but also psychosocial and academic topics. A transition education curriculum was created spanning three age groups on the three major topics and further broken up into three smaller sections for clinic use to accommodate for time restraints (Table 1). A pilot of the medical curriculum was started August 2019 addressing medical topics relating to better understanding of sickle cell disease. We then introduced our psychosocial curriculum in January 2021. A member of our comprehensive sickle cell team provides the four-question pre-test to the patient at the beginning of their regularly scheduled clinic appointment. At the end of the appointment the nurse or provider will grade the pre-test and provide verbal education as well as printed material on the topics for the day. Scoring and topics are tracked in the patient's note as well as in a transition education database. At the patient's next visit, the same test is administered as a post-test in order to determine knowledge acquired and retention of the materials. Post-test scores are also recorded in the patient note and transition education database. Once the patient finishes a module, we move to the next topic at the next regularly scheduled visit. Depending on the patient's genotype and medication management, post-tests can be given between two to six months after the pre-test.Results: Scores from pre-test were compared to those of post-test for patients that had the opportunity to complete the medical curriculum quizzes. One hundred and fifty six patients range from age 13-21 were included in this pilot study. Of patients aged 19-21, 69% have taken at least one pre-test and post-test for the medical education (63 total pre- and post-tests). Forty-three (78%) patients aged 16-18 have taken at least one pre-test and post-test (75 total pre- and post-tests). Thirty-three (67%) patients aged 13-15 have taken at least one pre-test and post-test (53 total pre- and post-tests). Results were categorized as score increased, score unchanged (pre-test score was not 100%), maintained 100% (unable to increase in score), and score decreased. In every age group, the category with the most results was “score increased.” Shown in Table 2.Conclusion: Further extrapolation suggests that the medical curriculum provided in clinic improves the sickle cell knowledge in this adolescent and young adult population. Though all age groups improved, the biggest improvement was noted in knowledge with our 13-15 year olds. These results suggest that early transition education can be impactful even if started at the early phases of adolescence. Studies are still ongoing with our medical curriculum and early psychosocial data is beginning to support our previous findings. As part of transition health care, focusing on disease education can provide better knowledge and hopefully improve patient outcomes. [Display omitted] DisclosuresClay: Novartis: Honoraria; GBT: Membership on an entity's Board of Directors or advisory committees.

A Quality Improvement Project to Implement Choking Prevention and First Aid Education in Prader-Willi Syndrome Caregivers.

Prader–Willi syndrome (PWS) is a complex neurodevelopmental genetic disorder characterized by hypotonia and hyperphagia. Consequently, individuals with PWS are at high risk of choking, and choking is a leading cause of morbidity and mortality. The aim of this quality improvement (QI) project is to provide choking prevention and first aid education from 0% to 80% of PWS caregivers seen in a multidisciplinary PWS clinic, and to assess the effectiveness of this education program. A QI initiative was developed to standardize and implement choking prevention and first aid education for PWS caregivers. Using a Likert scale, pre- and post-education assessments were conducted to measure caregiver (1) awareness of the PWS choking risk, (2) self-reported knowledge of choking prevention strategies, and (3) comfort in providing choking first aid. The American Heart Association Family and Friends® CPR (Dallas, TX, USA) curriculum was utilized. Education was provided during a regularly scheduled PWS clinic appointment. At project conclusion, 45/52 (87%) of PWS caregivers received education. A post-education assessment revealed an improvement in PWS caregivers’ awareness of choking risk, self-reported knowledge of choking prevention strategies, and comfort in providing choking first aid. This QI project supports a practice change to implement choking prevention and first aid education as standard process within our PWS clinic.

An Enhanced SMS Text Message-Based Support and Reminder Program for Young Adults With Type 2 Diabetes (TEXT2U): Randomized Controlled Trial.

BackgroundClinic attendance, metabolic control, engagement in self-management, and psychological health are suboptimal in young-onset (age of onset <40 years) type 2 diabetes.ObjectiveWe examined the effectiveness of an enhanced SMS text message–based support and reminder program in improving clinic attendance, metabolic control, engagement in self-management, and psychological health in young-onset type 2 diabetes.MethodsA 12-month, parallel-arm, randomized controlled trial comparing an enhanced, semipersonalized SMS text message–based intervention (incorporating 1-8 supportive and/or informative text messages per month) against standard care was conducted in a specialized clinic for young adult type 2 diabetes. The primary outcome was maintenance of 100% attendance at scheduled quarterly clinical appointments. Secondary outcomes included (1) metabolic indices, (2) pathology and self-monitored blood glucose (SMBG) data availability, and (3) psychosocial well-being.ResultsA total of 40 participants were randomized, and 32 completed their 12-month study visit. The average participant age was 32.7 (SD 5.1) years, 50% (20/40) were male, and baseline glycated hemoglobin A1c (HbA1c) was 7.3% (SD 1.9%) (56 mmol/mol, SD 20). A higher proportion of the intervention group achieved 100% attendance (12/21, 57%, vs 5/19, 26%, for the control group); Kaplan-Meier analysis demonstrated significantly greater cumulative attendance in the intervention group (P=.04). There were no between-group differences in HbA1c, BMI, lipids, or availability of pathology and SMBG data. Odds of recording an improvement in the Diabetes Empowerment Scale–Short Form score were higher in the intervention group at 6 months (odds ratio [OR] 4.3, 95% CI 1.1-17), with attenuation of this effect at study end (OR 3.1, 95% CI 0.9-11). Program acceptability was high; >90% of participants would recommend the program to new patients.ConclusionsAn enhanced SMS text message–based support and reminder program doubled scheduled clinic attendance rates for patients with young-onset type 2 diabetes. The program was highly acceptable and provided early support for patient empowerment but had no significant effect on measures of metabolic control or self-management.Trial RegistrationAustralian and New Zealand Clinical Trials Registry (ACTRN12618000479202); https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373579

Factors Contributing to Missed Appointments in a Pediatric Otolaryngology Clinic.

To understand why pediatric otolaryngology patients do not attend scheduled clinic appointments and identify factors correlated with no-show status. Retrospective cohort study. This is a retrospective cohort study that uses medical record data extraction of patients that was scheduled to attend new patient appointments at a pediatric otolaryngology clinic in 2018. Factors associated with no-shows included complex psychiatric history (OR (95% CI) 0.789 (0.71-0.88), P < .001), increased appointment lead time (OR (95% CI) 0.981 (0.976-0.987), P < .001), afternoon appointments (OR (95% CI) 0.783 (0.64-0.99), P=.038), and complex maternal medical history (OR (95% CI) 0.987 (0.979-0.996), P < .005). In contrast, factors associated with attendance included complex patients' medical history (OR (95% CI) 1.058 (0.98-1.02), P < .001), primary care physician at the same hospital (OR (95% CI) 2.766 (2.25-3.39), P < .001), and primary language being Spanish (OR (95% CI) 2.536 (1.75-3.67) P < .001). The factors of distance from the hospital (OR (95% CI) 1.001 (0.99-1.01), P=.868), season of appointment (P=.997), race (P=.623), and ethnicity (P=.804) were not associated with attendance or no-shows. Patient and maternal medical problems, mental health history, primary care location, appointment lead time, hour of appointment, and primary language, all contribute to appointment attendance, while appointment timing, race, and ethnicity are not associated with attendance. Further work must be performed to overcome these barriers to minimize healthcare risks and improve patient outcomes. Level 3 Laryngoscope, 132:895-900, 2022.