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INTRODUCTION: The COVID-19 pandemic created new challenges for cancer patients and caregivers. Little is known about the confluence of the pandemic and people with multiple marginalized identities, such as those in the Sexual and Gender Minority (SGM) community. METHODS: We conducted a mixed-methods pilot study using semi-structured interviews to elicit experiences of cancer among a diverse population of SGM patients and caregivers and a matched set of cisgender heterosexual (cishet) individuals. Here, we present qualitative findings focused on caregiver experiences as ascertained from the broader study. RESULTS: We discovered differences between SGM and cishet caregiving experiences, with SGM caregivers reporting less comfort in the cancer center environment; dissatisfaction with patient-provider communication; feeling excluded from their loved ones' care; and increased social isolation resulting from the caregiver experience. SGM and cishet caregivers described the detrimental impact of the pandemic. CONCLUSION: Our data suggest SGM caregivers experience additional burdens to cancer caregiving when compared to cishet peers. Although SGM and cishet caregivers reported challenges stemming from the COVID-19 pandemic, challenges appeared greater and more acute for SGM caregivers. Pandemic-related findings point to overall gaps in SGM cancer caregiver supports that may be remedied by additional research and targeted intervention development.
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COVID-19 , Neoplasias , Minorias Sexuais e de Gênero , Humanos , Cuidadores , Projetos Piloto , Pandemias , COVID-19/epidemiologia , Comportamento Sexual , Neoplasias/epidemiologiaRESUMO
This mixed method study developed multiple question types to understand and measure women's perceived benefit from adjuvant endocrine therapy. We hypothesis that patients do not understand this benefit and sought to develop the questions needed to test this hypothesis and obtain initial patient estimates. From 8/2022 to 3/2023, qualitative interviews focused on assessing and modifying 9 initial varied question types asking about the overall survival (OS) benefit from adjuvant endocrine therapy. Subsequent focus groups modified and selected the optimal questions. Patients' self-assessment of their OS benefit was compared to their individualized PREDICT model results. Fifty-three patients completed the survey; 42% Hispanic, 30% rural, and 47% with income < $39,999 per year. Patients reported adequate health care literacy (61.5%) and average confidence about treatment and medication decisions 49.4 (95% CI 24.4-59.5). From the original 9 questions, 3 modified questions were ultimately found to capture patients' perception of this OS benefit, focusing on graphical and prose styles. Patients estimated an OS benefit of 42% compared to 4.4% calculated from the PREDICT model (p < 0.001). In this group with considerable representation from ethnic minority, rural and low-income patients, qualitative data showed that more than one modality of question type was needed to clearly capture patients' understanding of treatment benefit. Women with breast cancer significantly overestimated their 10-year OS benefit from adjuvant endocrine therapy compared to the PREDICT model.
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Neoplasias da Mama , Humanos , Feminino , Projetos Piloto , Neoplasias da Mama/tratamento farmacológico , Etnicidade , Grupos Minoritários , Terapia CombinadaRESUMO
Background: Typically, shoulder range of motion (ROM) measurements are performed in a clinic setting, where physicians, physical therapists (PTs), and occupational therapists make use of a goniometer. Purpose: To determine the accuracy of a smartphone-based ROM software application (app) in assessing active shoulder ROM and compare the measurements with traditional goniometry as measured by a PT. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: This prospective, nonblinded study was conducted at a single institution with adult asymptomatic participants with full active ROM of both shoulders. Participants were enrolled between June 1 and 15, 2021. Each participant self-assessed their active shoulder ROM using the PeerWell smartphone app. A single PT concurrently measured each participant's active shoulder ROM using a handheld universal goniometer. Bilateral shoulder ROM (forward flexion, abduction [AB], external rotation, internal rotation [IR], and extension) was measured 2 times for each participant. Interrater reliability between the smartphone app and PT measurements as well as intrarater reliability for each method of measurement were assessed using the intraclass correlation coefficient (ICC), and limits of agreement were analyzed for the difference in measurement methods. Results: Data were analyzed for 60 shoulders (30 right, 30 left) from 30 participants (mean age, 31.4 ± 11.7 years; 73% female). The interrater reliability between the 2 methods was excellent for all movements (ICCs, 0.90-0.96). For all movements except shoulder AB, the mean difference in the measurements between the 2 methods was <1.3°; the mean difference in AB ROM was 2.08°. For all movements except IR, both PTs and the app showed excellent intrarater reliability (ICCs >0.90); for IR, good intrarater reliability (ICC ≥0.75) was observed. Conclusion: The PeerWell smartphone app provided measurements comparable with manual measurements taken by a PT using a goniometer. These data provide evidence that the smartphone app is a reliable and valid tool for measuring shoulder ROM and show promise for measuring and monitoring patient ROM remotely.
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Purpose: This mixed methods study developed multiple question types to understand and measure women's perceived benefit from adjuvant endocrine therapy. We hypothesis that patients do not understand this benefit and sought to develop the questions needed to test this hypothesis and obtain initial patient estimates. Methods: From 8/2022 to 3/2023, qualitative interviews focused on assessing and modifying 9 initial varied question types asking about the overall survival (OS) benefit from adjuvant endocrine therapy. Subsequent focus groups modified and selected the optimal questions. Patients' self-assessment of their OS benefit was compared to their individualized PREDICT model results. Results: Fifty-three patients completed the survey; 42% Hispanic, 30% rural, and 47% with income <$39,999 per year. Patients reported adequate health care literacy (61.5%) and average confidence about treatment and medication decisions 49.4 (95% CI 24.4-59.5). From the original 9 questions, 3 modified questions were ultimately found to capture patients' perception of this OS benefit, focusing on graphical and prose styles. Patients estimated an OS benefit of 42% compared to 4.4% calculated from the PREDICT model (p < 0.001). Conclusion: In this group with considerable representation from ethnic minority, rural and low-income patients, qualitative data showed that more than one modality of question type was needed to clearly capture patients' understanding of treatment benefit. Women with breast cancer significantly overestimated their 10-year OS benefit from adjuvant endocrine therapy compared to the PREDICT model.