Aim: There are many challenges to navigating young adulthood with type 1 diabetes (T1D). The COVID-19 pandemic has negatively impacted mental health, particularly in young adults (YA) who may already struggle to find structure and support. Methods: Surveys were distributed electronically to YA with T1D (ages 17-30) associated with the College Diabetes Network, a nonprofit organization serving YA with diabetes, in Spring and Fall 2020. Participants in each cohort were asked to rate their worry about contracting COVID-19 (scale of 1-5, 5=”very worried”), and report current diagnoses of depression or anxiety by a healthcare professional (yes/no). T-tests and chi-square tests examined the differences in reported COVID-19 worry, anxiety, and depression from Spring to Fall, as well as the association between worry and diagnosed depression/anxiety at both time points. Results: Participants were demographically similar at both time points ((M±SD) Spring: n=468, age 22.1±2.7 years, 82% female, 84% white; Fall: n=375, 22.4±3.2 years, 79% female, 82% white; p>.10). Overall, participants endorsed significantly more COVID-19 worry in Fall than in Spring (3.57±1.1 vs. 3.29±1.4; p<.001). Self-reported anxiety diagnoses showed an increasing trend from Spring to Fall (p=.065), while self-reported depression diagnoses showed no change between time points (p>.10). Participants with a pre-existing diagnosis of anxiety or depression endorsed significantly more COVID-19 worry than those without a mental health diagnosis at both time points during the pandemic (Spring: anxiety p=.012, depression p=.031; Fall: anxiety: p=.001, depression: p=.004). Conclusions: YA with T1D endorse more worry about contracting COVID-19 as the pandemic progresses, with an upward trend in anxiety diagnoses. Worry was exacerbated in those with a pre-existing mental health condition. These results underscore the need for greater support for YA with T1D, to reduce COVID-19 related worry and protect mental health outcomes. Disclosure P. V. Commissariat: None. D. St. pierre: None. A. Sabino: None. S. Lee: None. J. Saylor: None.
Background Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and have been associated with increased morbidity and mortality. The Sickle Cell Pain Diary- Self Report (SCPD-S) was developed as a daily patient-reported outcome (PRO) measure primarily intended to capture the frequency and severity of SCD-related pain during and outside of a SCPC. The SCPD-S also examines the impact of the pain associated with an SCPC on other health-related quality of life concepts. The objective of this study was to investigate the content validity of the SCPD-S. Methods The content validation testing included 18 in-depth hybrid concept elicitation and cognitive debriefing interviews conducted with SCD patients in the US aged 12 years and older. Interviewers used a semi-structured interview guide and a think-aloud approach for the cognitive debriefing portion. All interviews were recorded, transcribed, coded and analyzed. Results Eighteen interviews across two rounds were conducted. Round 1 hybrid interviews (n = 12) resulted in the expansion of the SCPD-S from 13 to 19 items. Items on the impact of an SCPC on social and recreational activities, sleep, and emotional well-being were added. Five items were significantly revised, as were three response choice sets. Round 2 hybrid interviews (n = 6) confirmed the comprehensiveness of the revised diary, understandability of the wording, and appropriateness of the recall period and response sets. Saturation analyses specific to concept elicitation revealed that no additional interviews were needed. Conclusions This study provided evidence to support the content validity of the SCPD-S, a self-report daily diary. Data gathered during patient interviews indicated that the SCPD-S is a fit for purpose measure of SCD and SCPC-related pain frequency and severity and the impact of this pain on other health-related quality of life concepts including fatigue and emotional health. The numerous changes to the SCPD-S as a result of the study findings highlight the importance of the content validation process when developing a PRO measure.
Aim: Young adults (YA) with type 1 diabetes (T1D) are particularly vulnerable to direct and indirect effects of COVID-19 on their diabetes care, due to the intensive nature of managing their disease while simultaneously transitioning into adulthood during this ongoing global health crises. This study examined glucose management and diabetes-related hospitalizations in YA with T1D during the COVID-19 pandemic. Method: Surveys were distributed electronically to YA between 17-30 years old and associated with the College Diabetes Network at two timepoints (spring and fall 2020). The survey included questions about hospitalization for diabetic ketoacidosis and/or severe hypoglycemia and challenges filling prescriptions. Chi-Square statistics were used for analyses. Results: No demographic differences were found between the spring (n=473) and fall (n=375) participants. There was a significant increase in hospitalizations for severe hypoglycemia from 3.4% in the spring to 10.4% in the fall (p<.001). In the spring, 21% of participants reported difficulty filling prescriptions due to COVID-19, compared to 7.3% in the fall. Among those who reported difficulty filling prescriptions, insulin (Spring [n=58], Fall [n=43]) and CGM supplies (Spring [n=41], Fall [n=22]) were most commonly cited. Reported hospitalizations for DKA increased from 6.7% in the spring to 10.1% in the fall and trending towards statistical significance (p=.077). Conclusions: YA with T1D reported increased incidence of severe hypoglycemia hospitalization during COVID-19, with many YA reporting difficulty filling and obtaining insulin and CGM supplies. Increased support may be necessary to protect health outcomes during this difficult time. Future work should utilize longitudinal methods to further assess the impacts of the COVID-19 pandemic on diabetes management. Disclosure J. Saylor: None. S. Lee: None. P. V. Commissariat: None. A. Sabino: None. D. St. pierre: None.
Background Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as sickle cell pain crises (SCPCs). The Sickle Cell Pain Diary-Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years with SCD. This study reports on the content validity of the SCPD-C. Methods The SCPD-C was developed based on a literature review, measurement expert input, and a patient advisory board including clinicians. Three rounds of interviews (including both concept elicitation and cognitive debriefing methodologies) were conducted with caregivers of children with SCD aged < 12 to evaluate the content validity of the SCPD-C. Results Across three rounds of interviews, caregivers confirmed concepts in the SCPD-C and described observed impacts that were important and were added. Overall, caregivers evaluated the SCPD-C as easy to understand, with some minor adaptations for clarity. Additionally, the diary was split into two versions based on the child’s age and school enrollment status (SCPD-CS for school-aged and SCPD-CN for non-school age children). Conclusions Caregivers provided valuable input that led to important additions and changes to the measures. The SCPD-CS and SCPD-CN are appropriate and fit-for-purpose observer-reported outcome measures of SCPC-related pain frequency and severity, and impacts on health-related quality of life.
Background Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as sickle cell pain crises (SCPCs). The Sickle Cell Pain Diary - Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years with SCD. This study reports on the content validity of the SCPD-C. Methods The SCPD-C was developed based on a literature review, measurement expert input, and a patient advisory board including clinicians. Three rounds of interviews (including both concept elicitation and cognitive debriefing methodologies) were conducted with caregivers of children with SCD aged < 12 to evaluate the content validity of the SCPD-C. Results Across three rounds of interviews, caregivers confirmed concepts in the SCPD-C and described observed impacts that were important and were added. Overall, caregivers evaluated the SCPD-C as easy to understand, with some minor adaptations for clarity. Additionally, the diary was split into two versions based on the child’s age and school enrollment status (SCPD-CS for school-aged and SCPD-CN for non-school age children). Conclusions Caregivers provided valuable input that led to important additions and changes to the measures. The SCPD-CS and SCPD-CN are appropriate and fit-for-purpose observer-reported outcome measures of SCPC-related pain frequency and severity, and the impacts on health-related quality of life.
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