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1.
Res Sq ; 2024 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-39483889

RESUMO

Background: Though social determinants are the primary drivers of health, few studies of people living with HIV (PLWH) focus on non-clinical correlates of insecure and/or fragmented connections with the care system. Our team has used linked clinical and multisector non-clinical data to study how residential mobility and connection to social services influence the HIV care continuum. We engage a diverse group of invested patients and community members to guide and inform this research. Our objective is to generate stakeholder-informed, research-based interventions that are relevant to the community, and to share our engagement approach and findings so that other researchers can do the same. Methods: Our research team partnered with the Indiana Clinical and Translational Sciences Institute's Research Jam, to develop and implement a human-centered design research plan to engage with individuals with lived experience relevant to our research. We recruited a panel composed of PLWH as well as clinicians and individuals from agencies that provide medical and non-medical services to PLWH in Marion County, Indiana. We used a variety of human-centered design tools and activities to engage individuals during six sessions, with results informing our engagement and research activities. Results: Since the inception of the project, 48 individuals have joined the stakeholder panel. Thirty-five are actively engaged and have participated in one or more of the six sessions conducted to date. The panel helped guide and prioritize analyses, aided in identification of data missing from our ecosystem, helped interpret results, provided feedback on future interventions, and co-presented with us at a local health equity conference. Conclusions: We utilized community engagement to expand the scope of our research and found that the process provided value to both stakeholders and research team members. Human-centered design enhanced this partnership by keeping it person-centered, developing empathy and trust, increasing stakeholder retention, and empowering stakeholders to collaborate meaningfully with the research team. The use of these methods is essential to conducting relevant, impactful, and sustainable research. We anticipate that these methods will be important for academic and public health researchers wishing to engage with and integrate the ideas of community stakeholders.

2.
J Pediatr Urol ; 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39153923

RESUMO

INTRODUCTION/BACKGROUND: Patient-reported outcome measures (PROMs) for hypospadias care are lacking, and most existing instruments were developed without patient input. OBJECTIVE: The objective of this study was to 1) use our previously developed Hypospadias Journal for concept elicitation in a sample of adolescent and young adult hypospadias patients and 2) develop a new hypospadias PROM. STUDY DESIGN: We recruited English-speaking males ages 13-30 living in the United States with a self-reported history of hypospadias through targeted advertisements on Facebook and Instagram from March to June 2022. Using a Qualtrics screening survey ineligible respondents were identified using automated fraud detection and manual review. Consenting participants were sent an electronic Hypospadias Journal containing brief creative writing exercises and multiple-choice scales to facilitate participant reflections about genital appearance, urination, sexual function, and psychosocial well-being. Demographics were summarized using descriptive statistics. Human-centered design researchers synthesized the journals' key themes to 1) create an affinity diagram with hypospadias-related quality of life (QOL) domains and 2) draft items for the PROM covering each domain and sub-domain. Journal participants were asked to complete a survey to 1) rank hypospadias QOL domains, subdomains, and draft items for the PROM, and 2) explore their preferences for item phrasing. In a small group virtual interview, a urologist and a hypospadias patient reviewed and revised draft PROM items, and a final PROM was created. RESULTS: Of the 411 completed screening surveys, 391 were ineligible. Journals were sent to 20 eligible participants. Of these, 12 completed journals: 8 adults; 4 adolescents (11 surgical/1 non-surgical): 66.7% White, 8.3% Black, 16.7% Asian, 8.3% >1 race. The meatal location was distal for 41.7%, proximal for 41.7%, unknown/missing for 16.7%. We identified four hypospadias-related quality-of-life domains and 13 respective sub-domains (Extended Summary Figure) of these, two were novel domains: 1) knowledge about the condition/treatment and comfort with treatment decision, and 2) impact on relationships with caregivers, medical providers, and sexual partners. A final PROM prototype, the Patient Assessment Tool for Hypospadias (PATH) was created, covering all QOL domains identified by participants. DISCUSSION: We created a simple, brief hypospadias PROM to screen for salient topics to be addressed by providers in the clinical setting. Limitations include the small sample size and limited clinical details about participants. CONCLUSIONS: Our study provides a hypospadias PROM that is ready for psychometric assessment in a larger sample.

3.
BMJ Nutr Prev Health ; 7(1): 212-215, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38966097

RESUMO

To develop robust prediction models for infant obesity risk, we need data spanning multiple levels of influence, including child clinical health outcomes (eg, height and weight), information about maternal pregnancy history, detailed sociodemographic information of parents and community-level factors. Few data sources contain all of this information. This manuscript describes the creation of the Obesity Prevention in Early Life (OPEL) database, a longitudinal, population-based database that links clinical data with birth certificates and geocoded area-level indicators for 19 437 children born in Marion County, Indiana between 2004 and 2019. This brief describes the methodology of linking administrative data, the establishment of the OPEL database, and the clinical and public health implications facilitated by these data. The OPEL database provides a strong basis for further longitudinal child health outcomes studies and supports the continued development of intergenerational linked clinical-public health databases.

4.
JMIR Hum Factors ; 11: e57239, 2024 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-38861717

RESUMO

BACKGROUND: Overdose Fatality Review (OFR) is an important public health tool for shaping overdose prevention strategies in communities. However, OFR teams review only a few cases at a time, which typically represent a small fraction of the total fatalities in their jurisdiction. Such limited review could result in a partial understanding of local overdose patterns, leading to policy recommendations that do not fully address the broader community needs. OBJECTIVE: This study explored the potential to enhance conventional OFRs with a data dashboard, incorporating visualizations of touchpoints-events that precede overdoses-to highlight prevention opportunities. METHODS: We conducted 2 focus groups and a survey of OFR experts to characterize their information needs and design a real-time dashboard that tracks and measures decedents' past interactions with services in Indiana. Experts (N=27) were engaged, yielding insights on essential data features to incorporate and providing feedback to guide the development of visualizations. RESULTS: The findings highlighted the importance of showing decedents' interactions with health services (emergency medical services) and the justice system (incarcerations). Emphasis was also placed on maintaining decedent anonymity, particularly in small communities, and the need for training OFR members in data interpretation. The developed dashboard summarizes key touchpoint metrics, including prevalence, interaction frequency, and time intervals between touchpoints and overdoses, with data viewable at the county and state levels. In an initial evaluation, the dashboard was well received for its comprehensive data coverage and its potential for enhancing OFR recommendations and case selection. CONCLUSIONS: The Indiana touchpoints dashboard is the first to display real-time visualizations that link administrative and overdose mortality data across the state. This resource equips local health officials and OFRs with timely, quantitative, and spatiotemporal insights into overdose risk factors in their communities, facilitating data-driven interventions and policy changes. However, fully integrating the dashboard into OFR practices will likely require training teams in data interpretation and decision-making.


Assuntos
Overdose de Drogas , Grupos Focais , Design Centrado no Usuário , Humanos , Overdose de Drogas/prevenção & controle , Overdose de Drogas/epidemiologia , Indiana/epidemiologia , Inquéritos e Questionários
5.
BMC Health Serv Res ; 24(1): 687, 2024 May 30.
Artigo em Inglês | MEDLINE | ID: mdl-38816829

RESUMO

INTRODUCTION: Rates of substance use are high among youth involved in the legal system (YILS); however, YILS are less likely to initiate and complete substance use treatment compared to their non legally-involved peers. There are multiple steps involved in connecting youth to needed services, from screening and referral within the juvenile legal system to treatment initiation and completion within the behavioral health system. Understanding potential gaps in the care continuum requires data and decision-making from these two systems. The current study reports on the development of data dashboards that integrate these systems' data to help guide decisions to improve substance use screening and treatment for YILS, focusing on end-user feedback regarding dashboard utility. METHODS: Three focus groups were conducted with n = 21 end-users from juvenile legal systems and community mental health centers in front-line positions and in decision-making roles across 8 counties to gather feedback on an early version of the data dashboards; dashboards were then modified based on feedback. RESULTS: Qualitative analysis revealed topics related to (1) important aesthetic features of the dashboard, (2) user features such as filtering options and benchmarking to compare local data with other counties, and (3) the centrality of consistent terminology for data dashboard elements. Results also revealed the use of dashboards to facilitate collaboration between legal and behavioral health systems. CONCLUSIONS: Feedback from end-users highlight important design elements and dashboard utility as well as the challenges of working with cross-system and cross-jurisdiction data.


Assuntos
Grupos Focais , Pesquisa Qualitativa , Transtornos Relacionados ao Uso de Substâncias , Humanos , Adolescente , Transtornos Relacionados ao Uso de Substâncias/terapia , Masculino , Feminino , Delinquência Juvenil/legislação & jurisprudência , Continuidade da Assistência ao Paciente
6.
Inquiry ; 61: 469580241237051, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38528783

RESUMO

Substance use disorders among reproductive aged women are a major public health issue. There is little work investigating the validity and reliability of electronic health record (EHR) data for measuring substance use in this population. This study examined the concordance of self-reported substance use with clinical diagnoses of substance use, substance abuse and substance use disorder in EHR data. Reproductive age women enrolled in the Community-Based Addiction Reduction (CARE) program were interviewed by peer recovery coaches (PRC) at enrollment. That survey data was linked with EHR data (n = 102). Concordance between self-reported substance use and clinical diagnoses in the EHR was examined for opioids, cannabis/THC, and cocaine. Cohen's kappa, sensitivity, and specificity were calculated. The survey captured a higher number of women who use substances compared to the EHR. The concordance of self-report with EHR diagnosis varied by substance and was higher for opioids (17.6%) relative to cannabis/THC (8.8%), and cocaine (3.0%). Additionally, opioids had higher sensitivity (46.2%) and lower specificity (76.2%) relative to cannabis/THC and cocaine. Survey data collected by PRCs captured more substance use than EHRs, suggesting that EHRs underestimate substance use prevalence. The higher sensitivity and lower specificity of opioids was due to a larger number of women who had a diagnosis of opioid use in the EHR who did not self-report opioid use in the self-report survey relative to cannabis/THC and cocaine. Opioid self-report and diagnosis may be influenced by research setting, question wording, or receipt of medication for opioid use disorder.


Assuntos
Cocaína , Transtornos Relacionados ao Uso de Substâncias , Humanos , Feminino , Adulto , Autorrelato , Registros Eletrônicos de Saúde , Analgésicos Opioides , Reprodutibilidade dos Testes , Transtornos Relacionados ao Uso de Substâncias/diagnóstico , Transtornos Relacionados ao Uso de Substâncias/epidemiologia
7.
Public Health Rep ; 139(1): 88-93, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37119181

RESUMO

OBJECTIVE: The opioid epidemic has led to a surge in diagnoses of neonatal opioid withdrawal syndrome (NOWS). Many states track the incidence of NOWS by using the P96.1 International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) code for "neonatal withdrawal symptoms from maternal use of drugs of addiction." In October 2018, an ICD-10-CM code for neonatal opioid exposure (P04.14) was introduced. This code can be used when an infant is exposed to opioids in utero but does not have clinically significant withdrawal symptoms. We analyzed the effect of the P04.14 code on the incidence rate of NOWS (P96.1) and "other" neonatal drug exposure diagnoses (P04.49). METHODS: We used private health insurance data collected for infants in the United States from the first quarter of 2016 through the third quarter of 2021 to describe incidence rates for each code over time and examine absolute and percentage changes before and after the introduction of code P04.14. RESULTS: The exclusive use of code P96.1 declined from an incidence rate per 1000 births of 1.08 in 2016-2018 to 0.70 in 2019-2021, a -35.7% (95% CI, -47.6% to -23.8%) reduction. Use of code P04.49 only declined from an incidence rate of 2.34 in 2016-2018 to 1.64 in 2019-2021, a -30.0% (95% CI, -36.4% to -23.7%) reduction. Use of multiple codes during the course of treatment increased from an average incidence per 1000 births of 0.56 in 2016-2018 to 0.79 in 2019-2021, a 45.5% (95% CI, 24.8%-66.1%) increase. CONCLUSION: The introduction of ICD-10-CM code P04.14 altered the use of other neonatal opioid exposure codes. The use of multiple codes increased, indicating that some ambiguity may exist about which ICD-10-CM code is most appropriate for a given set of symptoms.


Assuntos
Síndrome de Abstinência Neonatal , Transtornos Relacionados ao Uso de Opioides , Síndrome de Abstinência a Substâncias , Recém-Nascido , Humanos , Estados Unidos/epidemiologia , Analgésicos Opioides/efeitos adversos , Classificação Internacional de Doenças , Síndrome de Abstinência Neonatal/epidemiologia , Seguro Saúde , Transtornos Relacionados ao Uso de Opioides/epidemiologia
8.
J Acquir Immune Defic Syndr ; 94(5): 403-411, 2023 12 15.
Artigo em Inglês | MEDLINE | ID: mdl-37949443

RESUMO

OBJECTIVE: Justice involvement and psychiatric comorbidities contribute to excess HIV morbidity, yet their interaction is poorly understood. We examined associations of this overlap with HIV outcomes among people living with HIV (PLWH). METHODS: We conducted a retrospective cohort study of PLWH aged 13 years and older residing in Marion County (Indianapolis), IN, during 2018 (n = 5730) using linked HIV surveillance, arrest, and clinical data. We used univariable and multivariable regression to evaluate main and interaction effects of 2010-2017 arrest and mental health diagnosis on 2018 linkage to care (LTC), retention in care (RIC), and undetectable viral load (UVL). RESULTS: LTC decreased among those with, versus without, an arrest (P = 0.02), although mental health diagnoses had no significant effect on LTC. When controlling for demographics and substance use disorder, analyses indicated a protective effect of arrest history on odds of RIC (adjusted odds ratio [aOR] = 1.54) and UVL (aOR = 1.26). Mental health diagnosis also increased odds of RIC (aOR = 2.02) and UVL (aOR = 1.95). Post hoc tests demonstrated that these results were mediated by outpatient care utilization, although an arrest or mental health diagnosis did increase odds of RIC among PLWH and a history of low outpatient utilization. CONCLUSIONS: Outpatient care utilization improves HIV outcomes, even among those with justice involvement and psychiatric comorbidities. Holistic approaches to care can increase utilization. Implementation of "no wrong door" approaches, such as integration of mental health care in the primary care setting, simplifies health care navigation and improves access. Among those arrested, access to a Behavioral Court program can improve, rather than disrupt, HIV care.


Assuntos
Infecções por HIV , Saúde Mental , Humanos , Estudos Retrospectivos , Infecções por HIV/complicações , Infecções por HIV/diagnóstico , Infecções por HIV/tratamento farmacológico , Continuidade da Assistência ao Paciente , Atenção à Saúde
9.
JAMA Netw Open ; 6(10): e2340246, 2023 10 02.
Artigo em Inglês | MEDLINE | ID: mdl-37902754

RESUMO

Importance: Despite the prevalence of posttraumatic stress symptoms after firearm injury, little is known about how firearm injury survivors connect with mental health services. Objective: To determine facilitators and barriers to mental health care engagement among firearm injury survivors. Design, Setting, and Participants: A qualitative study of 1-on-1, semistructured interviews conducted within a community setting in Indianapolis, Indiana, between June 2021 and January 2022. Participants were recruited via community partners and snowball sampling. Participants who survived an intentional firearm injury, were shot within Indianapolis, were aged 13 years or older, and were English speaking were eligible. Participants were asked to discuss their lives after firearm injury, the emotional consequences of their injury, and their utilization patterns of mental health services. Data were analyzed from August 2022 to June 2023. Main Outcomes and Measures: Survivors' lived experience after firearm injury, sources of emotional support, mental health utilization, and their desired engagement with mental health care after firearm injury. Results: A total of 18 participants (17 were Black [94%], 16 were male [89%], and 14 were aged between 13 and 24 years [77%]) who survived a firearm injury were interviewed. Survivors described family members, friends, and informal networks as their main source of emotional support. Barriers to mental health care utilization were perceived as a lack of benefit to services, distrust in practitioners, and fear of stigma. Credible messengers served as facilitators to mental health care. Survivors also described the emotional impact their shooting had on their families, particularly mothers, partners, and children. Conclusions and Relevance: In this study of survivors of firearm injury, findings illustrated the consequences of stigma and fear when seeking mental health care, inadequate trusted resources, and the need for awareness of and access to mental health resources for family members and communities most impacted by firearm injury. Future studies should evaluate whether community capacity building, digital health delivery, and trauma-informed public health campaigns could overcome these barriers to mitigate the emotional trauma of firearm injuries to reduce health disparities and prevent future firearm violence.


Assuntos
Armas de Fogo , Serviços de Saúde Mental , Ferimentos por Arma de Fogo , Criança , Feminino , Masculino , Humanos , Adolescente , Adulto Jovem , Adulto , Ferimentos por Arma de Fogo/epidemiologia , Saúde Mental , Mães
10.
Health Justice ; 11(1): 30, 2023 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-37542571

RESUMO

BACKGROUND: For youth involved in the juvenile justice (JJ) system, caregiver involvement and engagement in the system is crucial for youth development and outcomes of JJ cases; however, there are challenges to establishing positive/productive partnerships between caregivers and JJ representatives. The current project examines perspectives of caregivers and JJ personnel regarding facilitators and barriers to establishing JJ-caregiver partnerships, as well as their perceptions of the use of a caregiver navigator program to support caregivers of system-involved youth. Results are used to inform development of a caregiver navigator program to support caregivers and help them navigate the JJ system. RESULTS: Semi-structured interviews were conducted with caregivers of youth involved in JJ (n = 15, 53% White, 93% female), JJ personnel (n = 7, 100% White, 50% female), and JJ family advisory board members (n = 5, 100% Black, 100% female). Caregivers reported varying experiences across intake/arrest, court, and probation processes. Positive experiences were characterized by effective communication and feeling supported by JJ. Negative experiences related to feeling blamed and punished for their child's system involvement and feeling unsupported. JJ interviews corroborated caregiver sentiments and also illustrated facilitators and barriers to JJ-caregiver partnerships. Both JJ personnel and caregivers endorsed potential benefits of a peer-based caregiver navigator program to provide social, informational, and emotional support. CONCLUSION: Continued work is needed to improve JJ-caregiver partnerships and use of a peer-based navigator program has the potential to address barriers to caregiver engagement in the JJ system.

11.
Prev Med Rep ; 35: 102333, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37564121

RESUMO

Objective: How we communicate about obesity is critical as treatment paradigms shift upstream. We previously identified parental perceptions, concerns, beliefs, and communication preferences about early life obesity risk. We engaged parents of children 0 to 24 months of age and pediatricians from Indianapolis, Indiana, USA in the co-design of messages and tools that can be used to facilitate parent/provider conversations about early life obesity prevention. Methods: From April to June 2021, we conducted a series of co-design workshops with parents of children ages 0 to 24 months and pediatricians to identify their preferences for communicating obesity prevention in the setting of a pediatric well visit. Human-centered design techniques, including affinity diagraming and model building, were used to inform key elements of a communication model and communication strategy messages. These elements were combined and refined to create prototype tools that were subsequently refined using stakeholder feedback. Results: Parent participants included 11 mothers and 2 fathers: 8 white, 4 black, and 1 Asian; median age 33 years with 38% reporting annual household incomes less than $50,000. Pediatricians included 7 female and 6 male providers; 69% white. Through an iterative process of co-design, we created an exam room poster that addresses common misconceptions about infant feeding, sleep and exercise, and a behavior change plan to foster parent/provider collaboration focused on achieving children's healthy weight. Conclusions: Our hands-on, collaborative approach may ultimately improve uptake, acceptability and usability of early life obesity interventions by ensuring that parents remain at the center of prevention efforts.

12.
J Pediatr Urol ; 19(4): 404.e1-404.e10, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37002023

RESUMO

INTRODUCTION: No tools exist to help children with spina bifida (SB) describe their incontinence concerns and to help their providers account for them when evaluating management success. Our aim was to understand patients', parents', and clinicians' preferences about how a SB continence goal-selection tool (MyGoal-C) should look and function, and to create a tool prototype. METHODS: We used a qualitative research approach integrated with human-centered design methods. We recruited children with SB (8-17 years old), parents ( ≥ 18 years old) of children with SB (8-17 years old) in clinic and online, and urology healthcare providers at our institution. We surveyed children and parents, and conducted parent and provider Zoom-based prototyping sessions to iteratively design the app. Design researchers analyzed online activities using affinity diagramming, group analysis and modeling activities. Provider sessions were analyzed with qualitative thematic analysis based on grounded theory. Recruitment continued until saturation was reached. RESULTS: Thirteen children with SB participated (median age: 10 years old, 4 female, 9 shunted, 10 using bladder catheterizations). Thirty-seven parents participated (33 mothers, median age: 43 years old). Children and parents unanimously recommended an app and their comments generated 6 major theme domains: goal-setting process, in-app content, working toward goals, urology provider check-in, app customization, and using big data to improve future functionality. Twenty-one of the parents participated in 3 prototyping sessions with 6 breakout groups. The remaining 16 parents and 13 children then completed the Prototype Testing Survey, leading to a refined prototype and a visual flow map of the app experience (Figure). Feedback from 11 urology healthcare providers (7 female, 6 advanced practice providers) generated 8 themes: patient engagement/autonomy, clearly displaying results, integration into clinic workflow, not increasing clinical staff burden, potential clinician bias, parental involvement, limitations of the app, and future app adaptation. These cumulative data allowed for a construction of a final app prototype. COMMENT: Findings of our study lay the foundation for creating a goal-selection app that meets preferences and needs of children, parents, and providers. Next steps involve building the app, testing its usability and assessing it prospectively in a clinical setting. CONCLUSIONS: Children with SB and parents preferred an app to help them set and track continence goals. All stakeholders, including urology providers, offered complementary and mutually reinforcing feedback to guide the creation of an app prototype that would ultimately be integrated into a clinic visit.


Assuntos
Disrafismo Espinal , Urologia , Humanos , Criança , Feminino , Adulto , Adolescente , Objetivos , Pais , Inquéritos e Questionários , Disrafismo Espinal/complicações
13.
Child Abuse Negl ; 140: 106136, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36948028

RESUMO

BACKGROUND: As part of the implementation of Family First Preservation Services Act, and to meet legal requirements set by the Indiana State Legislature in 2019, Indiana Department of Child Services (DCS) implemented Indiana Family Preservation Services (INFPS) to maintain children in the home when it is deemed safe to do so. OBJECTIVE: This paper explores the effects of INFPS on child removal episodes and repeat maltreatment. PARTICIPANTS AND SETTING: This study compares all children and families receiving INFPS between January 1, 2021 to March 31, 2021 to a similar cohort of in-home cases that opened between January 1, 2019 and March 31, 2019. METHODS: Contribution analysis and a quasi-experimental design are employed by using administrative records and survey data collected from service providers. RESULTS: INFPS is associated with reduced repeat maltreatment by about 3-4 % at the case-level and about 2-3 % at the child-level. In contrast to repeat maltreatment, in both case-level and child-level analyses, INFPS was not significantly associated with decreased likelihood of child removal. CONCLUSION: Overall, these results identify short-term effectiveness of INFPS on reducing repeat maltreatment during the treatment period. Results highlight the potential utility of INFPS to improving such outcomes, through increased use of evidence-based practices (EBP). Current findings demonstrate the need for continued research on the long-term effects of INFPS on child and family outcomes.


Assuntos
Maus-Tratos Infantis , Humanos , Criança , Maus-Tratos Infantis/prevenção & controle , Indiana
14.
Clin Child Psychol Psychiatry ; 28(4): 1380-1392, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36737059

RESUMO

The current manuscript examines concurrent and longitudinal associations between the utilization of outpatient and intensive psychiatric services among Medicaid-enrolled youth. Using an administrative dataset of Medicaid claims from 2007 to 2017, youth were included if they were between the ages of 10-18 (M = 13.4, SD = 2.6) and had a psychiatric Medicaid claim (N = 33,590). Psychiatric services were coded as outpatient, emergency department (ED), inpatient, or residential based on Medicaid codes. Logistic regression analyses indicated that the receipt of even one outpatient visit significantly reduced the odds of having an ED, inpatient, and residential visit within 60-, 90-, and 120-day windows. Survival analyses indicated most youth did not have any ED, inpatient, or residential visit following their first outpatient visit. For remaining youth, having an outpatient visit significantly increased the risk of having an ED, inpatient, and residential visit following their initial appointment, which may suggest these youth are being triaged to a more appropriate level of care. Classification accuracy analyses indicated a cutoff of 2 outpatient visits yielded maximum accuracy in determining youth with ED, inpatient, and residential visits. Findings highlight use of outpatient-level services in reducing risk of more intensive service utilization.


Assuntos
Assistência Ambulatorial , Pacientes Ambulatoriais , Adolescente , Estados Unidos , Humanos , Criança , Medicaid , Serviço Hospitalar de Emergência , Atenção à Saúde
15.
J Clin Transl Sci ; 7(1): e17, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36755531

RESUMO

Effective stakeholder engagement increases research relevance and utility. Though published principles of community-based participatory research and patient-centered outcomes research offer guidance, few resources offer effective techniques to engage stakeholders and translate their engagement into improvements in research process and outcomes. The Indiana Clinical and Translational Sciences Institute (Indiana CTSI) is home to Research Jam (RJ), an interdisciplinary team of researchers, project management professionals, and design experts, that employs human-centered design (HCD) to engage stakeholders in the research process. Establishing HCD services at the Indiana CTSI has allowed for accessible and innovative stakeholder-engaged research. RJ offers services for stakeholder-informed study design, measurement, implementation, and dissemination. RJ's services are in demand to address research barriers pertaining to a diverse array of health topics and stakeholder groups. As a result, the RJ team has grown significantly with both institutional and extramural support. Researchers involved in RJ projects report that working with RJ helped them learn how to better engage with stakeholders in research and changed the way they approach working with stakeholders. RJ can serve as a potential model for effectively engaging stakeholders through HCD to improve translational research.

16.
Psychiatr Serv ; 74(4): 374-380, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36597697

RESUMO

OBJECTIVE: Adolescents with behavioral health disorders (i.e., mental health disorders and substance use) often experience frequent recurrence of symptoms, suggesting a need for an ongoing behavioral health intervention, rather than a single course of treatment. However, little is known about mental health care service use among adolescents over longer periods. The authors examined longitudinal patterns of outpatient behavioral health service utilization in a large sample of adolescents. METHODS: Medicaid claims for 8,197 adolescents (ages 10.0-13.9 years, mean±SD=11.5±1.2; 61% male) from one Indiana county between 2006 and 2017 were examined, with a focus on outpatient psychotherapy visits. Latent class analysis (LCA) was used to detect clusters of longitudinal patterns of outpatient psychotherapy visits across 5 years, beginning with an adolescent's first behavioral health visit. RESULTS: A five-class LCA model emerged with unique classes of service use based on duration and level of engagement (frequency) of monthly outpatient psychotherapy visits. Most adolescents fell in the nonuse class (38.7% of the sample). Additional classes were defined as late-onset low engagement (17.1%), early-onset high engagement (15.5%), early-onset moderate engagement (16.7%), and continuously high engagement (11.9%). Statistically significant differences were found across the classes in average duration and frequency of involvement (p<0.001), as well as in demographic characteristics (race, age, gender, and ethnicity) and behavioral health diagnoses (p<0.001). CONCLUSIONS: These findings confirm that adolescents with behavioral health diagnoses do not follow a uniform pattern of psychotherapy utilization. The distinct patterns of service use point toward the need to identify appropriate long-term service recommendations for adolescents.


Assuntos
Serviços de Saúde Mental , Transtornos Relacionados ao Uso de Substâncias , Estados Unidos , Humanos , Masculino , Adolescente , Criança , Feminino , Medicaid , Estudos Longitudinais , Psicoterapia
17.
Open Forum Infect Dis ; 10(1): ofac671, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36655190

RESUMO

Background: Musculoskeletal infections (MSKI), including osteomyelitis and septic arthritis, are among the most common invasive infections in children and have the potential to cause significant morbidity. Guidelines have been developed to optimize care based on clinician-developed endpoints. Patient-centered outcomes have not been defined for children with MSKI. This study identified outcomes most important to caregivers and patients with MSKI. Methods: This was a single-center prospective qualitative study of children 6 months to 18 years of age hospitalized with MSKI from November 2019 to September 2021. Using design-research methods, patients and caregivers participated in interviews and/or completed journals to describe their experiences during acute infection and recovery from MSKI. Results: A total of 51 patient/caregivers were approached to participate in the study, 35 of whom declined to participate, resulting in 8 interviews conducted and 14 journals collected from 16 patient/caregivers. From these, a journey map was created highlighting points of stress during the onset of symptoms, through hospitalization, and returning home with new challenges. In addition, patient-centered outcomes were identified. For caregivers, these included managing mental health, managing responsibilities, and receiving support. Both caregivers and patients shared the importance of understanding of treatment plans and responsibilities. For patients, improving mental and physical health was important. Conclusions: Management of children with MSKI is complex and requires a multidisciplinary team approach. Validation of the outcomes identified and development of a measurement tool are needed. Addressing the patient-centered outcomes we identified in this study can greatly improve the holistic care of children with MSKI.

18.
Glob Public Health ; 18(1): 2102202, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-35877989

RESUMO

Global health researchers often discount mutual learning and benefit to address shared health challenges across high and low- and middle-income settings. Drawing from a 30-year partnership called AMPATH that started between Indiana University in the US and Moi University in Kenya, we describe an innovative approach and program for mutual learning and benefit coined 'reciprocal innovation.' Reciprocal innovation harnesses a bidirectional, co-constituted, and iterative exchange of ideas, resources, and innovations to address shared health challenges across diverse global settings. The success of AMPATH in Kenya, particularly in HIV/AIDS and community health, resulted in several innovations being 'brought back' to the US. To promote the bidirectional flow of learning and innovations, the Indiana CTSI reciprocal innovation program hosts annual meetings of multinational researchers and practitioners to identify shared health challenges, supports pilot grants for projects with reciprocal exchange and benefit, and produces educational and training materials for investigators. The transformative power of global health to address systemic health inequities embraces equitable and reciprocal partnerships with mutual benefit across countries and communities of academics, practitioners, and policymakers. Leveraging a long-standing partnership, the Indiana CTSI has built a reciprocal innovation program with promise to redefine global health for shared wellbeing at a global scale.


Assuntos
Síndrome da Imunodeficiência Adquirida , Saúde Global , Humanos , Saúde Pública , Renda , Indiana
19.
J Pediatr Urol ; 19(2): 181-189, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36347777

RESUMO

INTRODUCTION: Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient-centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal-setting tool to guide incontinence management (Figure). Our aim was to understand patient experiences of UI and FI, and what goals should be included in the tool. METHODS: We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>=18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design researchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached. RESULTS: Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/unpleasant incontinence management, (4) inconvenient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identified six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, independence, interruptions at school and social/friends. Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas (FI). COMMENT: Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. CONCLUSIONS: Children with SB experience incontinence as distressing and unpredictable. Incontinence management can be challenging and unreliable. Patient-centered continence goals cluster in domains, indicating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.


Assuntos
Incontinência Fecal , Disrafismo Espinal , Sistema Urinário , Humanos , Feminino , Adolescente , Adulto , Criança , Incontinência Fecal/etiologia , Incontinência Fecal/terapia , Pais , Disrafismo Espinal/complicações , Disrafismo Espinal/psicologia , Mães
20.
J Health Care Poor Underserved ; 33(3): 1461-1477, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36245175

RESUMO

The purpose of the program WeCare was to provide a personalized approach to addressing the wide array of psycho-social-cultural-fiscal needs to reduce risk factors for infant mortality (IM) by supporting maternal and infant health through health coaching by community health workers (CHWs). A prospective cohort study of 1,513 women from highest risk ZIP codes for IM in central Indiana were followed over three years. The WeCare program focused on training and deploying CHWs to provide evidence-based, patient-centered social care and support to pregnant and postpartum women and tracked outcomes in health risk categories (mental health, nutrition, safe sleep, breastfeeding) targeted for behavioral change. The low birth weight rate among program participants was lower (8.9%) than Marion County's rate (10%) (p=0.23) with statistically significant improvement in many risk behaviors. Despite limitations, the personalized coaching provided by the CHWs provided an effective, practical approach to maternal and child health disparities.


Assuntos
Agentes Comunitários de Saúde , Mortalidade Infantil , Criança , Feminino , Humanos , Indiana/epidemiologia , Lactente , Gravidez , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Fatores de Risco
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