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1.
PLoS One ; 18(12): e0295330, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38113212

RESUMO

BACKGROUND AND AIMS: To date, no epidemiological survey has estimated the prevalence of adolescents identifying as being in recovery. This is necessary for planning and identifying the needs of youth with current and remitted substance use disorders. This study estimated the prevalence of recovery status in a large statewide epidemiological survey administered between January and March 2020. PARTICIPANTS: Participants were high school students in 9th through 12th grades throughout Illinois. MEASUREMENTS: Youth were asked if they were in recovery and if they had resolved problems with substances. Youth who reported recovery and problem resolving dual status (DS), recovery only (RO), and problem resolution only (PRO) were compared to propensity score matched control groups who reported neither status (neither/nor; NN). Outcomes included alcohol use, binge alcohol use, cannabis use, and prescription drug use in the past 30 days. FINDINGS: Prevalence estimates were 884 (1.4%) for DS, 1546 (2.5%) for PRO, and 1,811 (2.9%) for RO. Relative to propensity matched control samples, all three groups had significantly lower odds of prescription drug use. The PRO group had lower odds of past month cannabis use. There were no significant differences for either alcohol outcome. CONCLUSIONS: Prevalence estimates of youth in recovery are slightly lower than those of adults in recovery, and estimates should be replicated. Youth in recovery and those resolving problems have numerous behavioral health needs, and relative to matched controls, have even odds for past 30-day alcohol use. These findings compel us to further define recovery for adolescents and emerging adults to allow for improving treatments and epidemiological research.


Assuntos
Cannabis , Medicamentos sob Prescrição , Transtornos Relacionados ao Uso de Substâncias , Adulto , Humanos , Adolescente , Prevalência , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Consumo de Bebidas Alcoólicas/epidemiologia , Estudantes
2.
BMC Med Res Methodol ; 23(1): 210, 2023 09 21.
Artigo em Inglês | MEDLINE | ID: mdl-37735353

RESUMO

BACKGROUND: Epidemiological surveys offer essential data on adolescent substance use. Nevertheless, the precision of these self-report-based surveys often faces mistrust from researchers and the public. We evaluate the efficacy of a direct method to assess data quality by asking adolescents if they were honest. The main goal of our study was to assess the accuracy of a self-report honesty item and designate an optimal threshold for it, allowing us to better account for its impact on point estimates. METHODS: The participants were from the 2020 Illinois Youth Survey, a self-report school-based survey. We divided the primary dataset into subsets based on responses to an honesty item. Then, for each dataset, we examined two distinct data analysis methodologies: supervised machine learning, using the random forest algorithm, and a conventional inferential statistical method, logistic regression. We evaluated item thresholds from both analyses, investigating probable relationships with reported fake drug use, social desirability biases, and missingness in the datasets. RESULTS: The study results corroborate the appropriateness and reliability of the honesty item and its corresponding threshold. These contain the agreeing honesty thresholds determined in both data analyses, the identified association between reported fake drug use and lower honesty scores, increased missingness and lower honesty, and the determined link between the social desirability bias and honesty threshold. CONCLUSIONS: Confirming the honesty threshold via missing data analysis also strengthens these collective findings, emphasizing our methodology's and findings' robustness. Researchers are encouraged to use self-report honesty items in epidemiological research. This will permit the modeling of accurate point estimates by addressing questionable reporting.


Assuntos
Medicamentos Falsificados , Adolescente , Humanos , Autorrelato , Reprodutibilidade dos Testes , Aprendizado de Máquina Supervisionado , Confiabilidade dos Dados
3.
Children (Basel) ; 10(6)2023 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-37371233

RESUMO

Understanding how parents, and other primary caregivers, perceive and experience early childhood programs and services is essential for identifying family-centered facilitators and barriers to service utilization. Therefore, this paper aims to explore parent knowledge of and experiences with community efforts of an early childhood system in Illinois: the All Our Kids Early Childhood Networks (AOK Networks). Our research team conducted focus group interviews with 20 parents across four Illinois counties. A semi-structured interview guide was used to examine parent perceptions of an early childhood system's community efforts in promoting the health and well-being of children aged from birth to five. Thematic network analysis was used to analyze all focus group data. Parents indicated three salient themes, including: (1) comprehensive information sharing practices, (2) diverse service engagement, and (3) barriers to service access. Overall, parents reported general satisfaction with the quality of available services and provided feedback regarding identified areas of need to increase the accessibility and utilization of local services. Engaging parents as partners is essential to the effective implementation of family-centered early childhood services. Families are the experts of their lived experiences, and incorporating their voices in program development and evaluation efforts works to increase positive child and family outcomes.

4.
Contemp Clin Trials ; 124: 107019, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36414208

RESUMO

BACKGROUND: Young adulthood (YA) is a complex phase of life, marked by key developmental goals, including educational and vocational attainment, housing independence, maintenance of social relationships, and financial stability. A cancer diagnosis during, or prior to, this phase of life can compromise the achievement of these milestones. Studies of adults with cancer have demonstrated that >70% report experiencing financial side-effects, which are associated with increased mortality, diminished health-related quality of life, and forgone medical care. The goal of this project is to evaluate financial distress of YA-aged survivors of blood cancers, and the impact of financial navigation on alleviating this distress. METHODS: This three-arm, multi-site, hybrid type 2 randomized effectiveness-implementation design (EID) study will be conducted through remote consent, remote data capture and telephone-based/virtual financial navigation. Participants will be aged 18-39, and more than three years from their blood cancer diagnosis. In this six-month intervention, the study will compare the primary outcome of financial distress in three arms: (1) usual care (2) participant-initiated, ad hoc navigation, and (3) study-directed proactive navigation. The study will be evaluated via the five-component Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) outcome strategy with a mixed-methods approach through quantitative assessment of participant-reported financial distress using the Personal Financial Wellness Scale™, as the primary outcome measure, and qualitative assessment through interviews. CONCLUSION: The study will address many unanswered questions regarding financial navigation within the YA survivor population and will inform the most successful strategies to mitigate financial distress in this vulnerable population.


Assuntos
Neoplasias Hematológicas , Neoplasias , Adulto , Humanos , Adulto Jovem , Qualidade de Vida
5.
Nat Microbiol ; 7(5): 640-652, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35484231

RESUMO

The dynamics of SARS-CoV-2 replication and shedding in humans remain poorly understood. We captured the dynamics of infectious virus and viral RNA shedding during acute infection through daily longitudinal sampling of 60 individuals for up to 14 days. By fitting mechanistic models, we directly estimated viral expansion and clearance rates and overall infectiousness for each individual. Significant person-to-person variation in infectious virus shedding suggests that individual-level heterogeneity in viral dynamics contributes to 'superspreading'. Viral genome loads often peaked days earlier in saliva than in nasal swabs, indicating strong tissue compartmentalization and suggesting that saliva may serve as a superior sampling site for early detection of infection. Viral loads and clearance kinetics of Alpha (B.1.1.7) and previously circulating non-variant-of-concern viruses were mostly indistinguishable, indicating that the enhanced transmissibility of this variant cannot be explained simply by higher viral loads or delayed clearance. These results provide a high-resolution portrait of SARS-CoV-2 infection dynamics and implicate individual-level heterogeneity in infectiousness in superspreading.


Assuntos
COVID-19 , SARS-CoV-2 , Humanos , Carga Viral , Eliminação de Partículas Virais
6.
Cannabis ; 5(3): 36-46, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-37287932

RESUMO

Introduction: In the United States, 19 states permit recreational use of cannabis, with 16 more permitting medical use (Marijuana Policy Project, 2021). Concerns remain about whether liberalized policies result in increased adolescent cannabis use. To date, limited evidence exists that the statewide prevalence of adolescent cannabis use increased in states with liberalized policies. However, analyses at local levels show some negative impacts. Thus, we analyzed if living in a ZIP code with a dispensary (ZCWD) was associated with adolescent cannabis use. Methods: Dispensary ZIP codes from public records were matched to self- reported ZIP codes on the Illinois Youth Survey (IYS). We compared past 30-day and past-year cannabis use among youth living in a ZCWD and not living in a ZCWD. Results: About one in eight adolescents (12.8%, n = 1,348) in the weighted sample (n=10,569) resided in a ZCWD. Overall, past 30-day use was lower among youth who lived in ZIP codes with dispensaries (OR = .69, p < .05), with variation by grade. For example, only 10th (OR = .62, p < .05) and 12th graders (OR = .59, p < .05) living in a ZCWD had lower odds of past 30-day cannabis use. Additionally, only 12th graders in a ZCWD had lower odds of past-year use (OR = .70, p < .05). Finally, suburban youth living in a ZCWD also had lower odds of cannabis use (OR = .54, p < .01). Conclusion/Discussion: Cannabis use was significantly lower among 10th and 12th graders living in a ZCWD. Additional research should continue to monitor evolving state policies and whether they are associated with adolescent cannabis use.

7.
Transgend Health ; 7(5): 416-422, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36644491

RESUMO

Purpose: Suicide is a leading public health concern among transgender and gender expansive adolescents, although little research has examined mechanisms through which gender identity is associated with suicidal ideation. This study examined the indirect effects of peer victimization, dating violence, substance use (SU), SU problems, and depressive symptoms in the relationship between gender identity and suicidal ideation. Methods: Secondary data analysis was conducted from a 2018 statewide survey, including 4464 adolescents who identified as male, female, transgender, or gender expansive (n=1116 per gender). The sample was frequency matched on grade, race, geographic region, and free/reduced lunch status. Mediation analyses were performed. Results: Reports of suicidal ideation were highest among transgender (49.29%) and gender expansive (41.31%) adolescents compared with male (10.82%) and female adolescents (19.08%). Using the Karlson, Holm, and Breen approach, 50.45% of the effect of being transgender on suicidal ideation was mediated through peer victimization, dating violence, and depressive symptoms, and 39.29% through SU, SU problems, and depressive symptoms. The mediation through the same pathways for being gender expansive was 46.37% and 39.89%, respectively. Across both models, depressive symptoms predominately accounted for the mediating effect. Conclusion: Transgender and gender expansive youth are at alarming risk for suicidal ideation, which illustrates the critical need for suicide prevention within this population. Programs that promote mental health and work to prevent bullying, dating violence, SU, and SU problems are crucial; although longitudinal research is needed, targeting these mechanisms may play a critical role in reducing suicidal ideation and risk.

8.
medRxiv ; 2021 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-34282424

RESUMO

The dynamics of SARS-CoV-2 replication and shedding in humans remain poorly understood. We captured the dynamics of infectious virus and viral RNA shedding during acute infection through daily longitudinal sampling of 60 individuals for up to 14 days. By fitting mechanistic models, we directly estimate viral reproduction and clearance rates, and overall infectiousness for each individual. Significant person-to-person variation in infectious virus shedding suggests that individual-level heterogeneity in viral dynamics contributes to superspreading. Viral genome load often peaked days earlier in saliva than in nasal swabs, indicating strong compartmentalization and suggesting that saliva may serve as a superior sampling site for early detection of infection. Viral loads and clearance kinetics of B.1.1.7 and non-B.1.1.7 viruses in nasal swabs were indistinguishable, however B.1.1.7 exhibited a significantly slower pre-peak growth rate in saliva. These results provide a high-resolution portrait of SARS-CoV-2 infection dynamics and implicate individual-level heterogeneity in infectiousness in superspreading.

9.
J Infect Dis ; 224(6): 976-982, 2021 09 17.
Artigo em Inglês | MEDLINE | ID: mdl-34191025

RESUMO

BACKGROUND: Serial screening is critical for restricting spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) by facilitating timely identification of infected individuals to interrupt transmission. Variation in sensitivity of different diagnostic tests at different stages of infection has not been well documented. METHODS: In a longitudinal study of 43 adults newly infected with SARS-CoV-2, all provided daily saliva and nasal swabs for quantitative reverse transcription polymerase chain reaction (RT-qPCR), Quidel SARS Sofia antigen fluorescent immunoassay (FIA), and live virus culture. RESULTS: Both RT-qPCR and Quidel SARS Sofia antigen FIA peaked in sensitivity during the period in which live virus was detected in nasal swabs, but sensitivity of RT-qPCR tests rose more rapidly prior to this period. We also found that serial testing multiple times per week increases the sensitivity of antigen tests. CONCLUSIONS: RT-qPCR tests are more effective than antigen tests at identifying infected individuals prior to or early during the infectious period and thus for minimizing forward transmission (given timely results reporting). All tests showed >98% sensitivity for identifying infected individuals if used at least every 3 days. Daily screening using antigen tests can achieve approximately 90% sensitivity for identifying infected individuals while they are viral culture positive.


Assuntos
Teste para COVID-19 , COVID-19/diagnóstico , Testes Diagnósticos de Rotina , SARS-CoV-2/isolamento & purificação , Adulto , Idoso , Animais , Antígenos Virais/análise , Chlorocebus aethiops , Feminino , Humanos , Estudos Longitudinais , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Reação em Cadeia da Polimerase em Tempo Real , Saliva , Sensibilidade e Especificidade , Células Vero , Adulto Jovem
10.
medRxiv ; 2021 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-33791719

RESUMO

WHAT IS ALREADY KNOWN ABOUT THIS TOPIC?: Diagnostic tests and sample types for SARS-CoV-2 vary in sensitivity across the infection period. WHAT IS ADDED BY THIS REPORT?: We show that both RTqPCR (from nasal swab and saliva) and the Quidel SARS Sofia FIA rapid antigen tests peak in sensitivity during the period in which live virus can be detected in nasal swabs, but that the sensitivity of RTqPCR tests rises more rapidly in the pre-infectious period. We also use empirical data to estimate the sensitivities of RTqPCR and antigen tests as a function of testing frequency. WHAT ARE THE IMPLICATIONS FOR PUBLIC HEALTH PRACTICE?: RTqPCR tests will be more effective than rapid antigen tests at identifying infected individuals prior to or early during the infectious period and thus for minimizing forward transmission (provided results reporting is timely). All modalities, including rapid antigen tests, showed >94% sensitivity to detect infection if used at least twice per week. Regular surveillance/screening using rapid antigen tests 2-3 times per week can be an effective strategy to achieve high sensitivity (>95%) for identifying infected individuals.

11.
Psychooncology ; 30(7): 1104-1111, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33544421

RESUMO

CONTEXT: Although patients with acute myeloid leukemia (AML) experience significant toxicities and poor outcomes, few studies have quantified patients' experience. METHODS: A community-centered approach was used to develop an AML-specific best-worst scaling (BWS) instrument involving 13 items in four domains (psychological, physical, decision-making, and treatment delivery) to quantify patient worry. A survey of patients and caregivers was conducted using the instrument. Data were analyzed using conditional logistic regression. RESULTS: The survey was completed by 832 patients and 237 caregivers. Patients were predominantly white (88%), married/partnered (72%), and in remission (95%). The median age was 55 years (range: 19-87). Median time since diagnosis was 8 years (range: 1-40). Patients worried most about "the possibility of dying from AML" (BWS score = 15.5, confidence interval [CI] [14.2-16.7]) and "long-term side effects of treatments" (14.0, CI [12.9-15.2]). Patients found these items more than twice as worrisome as all items within the domains of care delivery and decision-making. Patients were least worried about "communicating openly with doctors" (2.50, CI [1.97-3.04]) and "having access to the best medical care" (3.90, CI [3.28-4.61]). Caregiver reports were highly correlated to patients' (Spearman's ρ = 0.89) though noted significantly more worry about the possibility of dying and spending time in the hospital. CONCLUSION: This large convenience sample demonstrates that AML patients have two principal worries: dying from their disease and suffering long-term side effects from treatment. To better foster patient-centered care, therapeutic decision-making and drug development should reflect the importance of both potential outcomes. Further work should explore interventions to address these worries.


Assuntos
Cuidadores , Leucemia Mieloide Aguda , Ansiedade , Humanos , Leucemia Mieloide Aguda/terapia , Pessoa de Meia-Idade , Avaliação de Resultados da Assistência ao Paciente , Inquéritos e Questionários
12.
J Sch Health ; 91(3): 250-257, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33417736

RESUMO

BACKGROUND: Epidemiological surveys are designed to collect representative trend data. School-based surveys are important to utilize so systems can effectively create prevention and intervention programs to alter youths' perceptions and behaviors related to substance use. However, there are many barriers when implementing a school-based survey. METHODS: This mixed methods study sought to uncover 30 school personnel's challenges when making the decision to implement the Illinois Youth Survey (IYS). Through a descriptive and interpretive approach, participants' thoughts to improve future recruitment procedures and reduce barriers for implementation were analyzed. RESULTS: Results found challenges included: (1) time; (2) parent-opt out consent letter; (3) wording of the survey responses; (4) honesty of the students' responses; (5) importance and use of the data. Moreover, the most common suggestions to improve recruitment included: (1) sharing knowledge about trend data; (2) year-round communication with school personnel; (3) targeting school personnel groups; and (4) providing examples of data use. CONCLUSIONS: Findings can be used to improve recruitment procedures for others who have similar challenges. If schools, counties, and states have representative data they can more precisely tailor their programming to meet the needs of their population.


Assuntos
Comportamento do Adolescente , Transtornos Relacionados ao Uso de Substâncias , Adolescente , Humanos , Instituições Acadêmicas , Estudantes , Inquéritos e Questionários
13.
Addict Behav ; 114: 106757, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33310393

RESUMO

BACKGROUND: Although rates of nonmedical opioid use are highest in late adolescence and emerging adulthood, efforts to understand the extent of the heterogeneity in opioid misuse during this time have been limited. The current study aimed to derive and define typologies of opioid use in high school students at the onset of emerging adulthood. METHODS: Survey responses from a statewide sample of high school students aged 18 and 19 (N = 26,223) were analyzed. Group-based comparisons between participants reporting opioid use and those not reporting opioid use were conducted. Among those reporting opioid use (n = 1,636), we conducted a latent class analysis (LCA) to identify heterogeneous subgroups of opioid users on the basis of non-medical use of prescription opioids (NMUPO) and heroin use. The resulting classes were then compared across various risk and protective factors using multinominal logistic regression. RESULTS: Consistent differences were observed between participants using opioids and participants not using opioids, with moderate to large effect sizes. Results from LCA revealed three subclasses: NMUPO-Any Use, NMUPO To Get High, and Heroin Use. Subclass differences were observed for non-opioid substance use, mental health, and demographics. CONCLUSIONS: Findings from this study underscore the variability of youth who engage in opioid use in late adolescence. Results also indicate that opioid use during adolescence is likely indicative of a broader set of substance use and mental health issues.


Assuntos
Transtornos Relacionados ao Uso de Opioides , Uso Indevido de Medicamentos sob Prescrição , Adolescente , Adulto , Analgésicos Opioides , Heroína , Humanos , Análise de Classes Latentes , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Prescrições , Adulto Jovem
14.
J Cancer Surviv ; 14(1): 43-47, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31741249

RESUMO

PURPOSE: This study explored survivorship services provided at National Cancer Institute (NCI)-Designated Cancer Centers for patients with blood cancer to identify gaps in services, unmet needs, and barriers to access. METHODS: Qualitative interviews with national experts and blood cancer survivors aided the development of an online survey distributed to a survivorship clinic director or staff at 63 NCI-Designated Cancer Centers. RESULTS: Staff at 71% of centers participated (n = 45). Survivorship needs identified as most important-follow-up for health issues due to treatment side effects, healthy behavior programming, and individual mental health services-were reported as offered at 91%, 84%, and 84% of centers, respectively. However, respondents indicated that satellite centers offered these services 20% of the time or less. Forty-five percent reported that they believed the majority of survivorship needs of patients with blood cancer who have completed treatment were not adequately met by their center or other organizations. Most frequently indicated barriers to accessing services were distance from the patient's home and lack of primary care physician adherence to best practices or knowledge of late/long-term effects. CONCLUSIONS: To enhance survivorship services for patients with blood cancer, NCI-Designated Cancer Centers and non-profits should focus on increasing access to services for survivors who do not reside near the main center and improving coordination between oncology, mental health, and primary care. IMPLICATIONS FOR CANCER SURVIVORS: Understanding survivorship service delivery is an important step toward developing solutions that help survivors seek and access support at their site of care and from other non-profit organizations.


Assuntos
Atenção à Saúde/métodos , Neoplasias Hematológicas/mortalidade , Sobrevivência , Feminino , Humanos , National Cancer Institute (U.S.) , Estados Unidos
15.
Curr Med Res Opin ; 35(11): 1965-1970, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31188058

RESUMO

Objective: Acute myeloid leukemia (AML) is experiencing a therapeutic renaissance due to the heightened biomedical understanding of AML and patient-focused drug development (PFDD). Many AML patients now live long-term with the side effects of treatment. This study documents the prevalence and severity of AML treatment-related side effects. Methods: A national cross-sectional survey designed with the Leukemia & Lymphoma Society assessed patients' experiences with short-term (nausea/vomiting, diarrhea, hair loss, mouth sores, infection, rash) and long-term (organ dysfunction, chemobrain, fatigue, neuropathy) treatment side effects. Patient and caregiver participants rated side effect severity (none-severe). Results: Survey participants (n = 1182) were mostly female (65%), AML patients (76%), and had undergone chemotherapy (94%). Eighty-seven per cent of participants reported severe short-term effects, and 33% reported severe long-term effects of treatment. Only 11% of respondents did not have any severe effects. Hair loss and fatigue were the most common severe short- and long-term side effects (78%, 33%). There was a moderate correlation between having short- and long-term adverse effects (r = 0.41, p < 0.001). Caregivers were more likely than patients to report severe organ dysfunction, fatigue, and neuropathy (p-values < 0.05). Conclusions: Survivors experience a high burden of side effects from AML treatments highlighting the need for the development of less toxic therapies. Differences in patients' and caregivers' experiences illustrate the importance of sampling from diverse sources to understand the full burden of AML treatment, and the need for less toxic drugs. This study informs patients, patient-advocacy groups, clinicians, and regulators about AML treatment burdens and provides the community with information to inform PFDD.


Assuntos
Antineoplásicos/efeitos adversos , Leucemia Mieloide Aguda/tratamento farmacológico , Adulto , Idoso , Idoso de 80 Anos ou mais , Alopecia/induzido quimicamente , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
16.
Patient Prefer Adherence ; 12: 647-655, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29731612

RESUMO

BACKGROUND: Acute myeloid leukemia (AML) is a rapidly progressing blood cancer for which new treatments are needed. We sought to promote patient-focused drug development (PFDD) for AML by developing and piloting an instrument to prioritize the worries of patients with AML. PATIENTS AND METHODS: An innovative community-centered approach was used to engage expert and community stakeholders in the development, pretesting, pilot testing, and dissemination of a novel best-worst scaling instrument. Patient worries were identified through individual interviews (n=15) and group calls. The instrument was developed through rigorous pretesting (n=13) and then piloted among patients and caregivers engaged in this study (n=25). Priorities were assessed using best-worst scores (spanning from +1 to -1) representing the relative number of times that items were endorsed as the most and the least worrying. All findings were presented at a PFDD meeting at the US Food and Drug Administration (FDA) that was attended by >80 stakeholders. RESULTS: The final instrument included 13 worries spanning issues such as decision making, treatment delivery, physical impacts, and psychosocial effects. Patients and caregivers most prioritized worries about dying from their disease (best minus worst [BW] score=0.73), long-term side effects (BW=0.28), and time in hospital (BW=0.25). CONCLUSION: Community-centered approaches are valuable in designing and executing PFDD meetings and associated quantitative surveys to document the experience of patients. Expert and community stakeholders welcomed the opportunity to share their experiences with the FDA and strongly endorsed implementing this survey nationally.

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