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2.
BMC Health Serv Res ; 24(1): 690, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38822307

RESUMO

BACKGROUND: There has been a longstanding effort to integrate behavioral health and HIV care for people with comorbid HIV and behavioral health needs, including those with severe mental illness (SMI). As this population frequents both behavioral health and HIV care settings, they were likely to experience new obstacles to the quality and availability of care during the COVID-19 pandemic. This study aims to describe how clinics for HIV services or behavioral healthcare-as well as co-located sites providing both-sought to rapidly shift protocols to maintain a standard of patient care for people with comorbid HIV and SMI while adapting to the unprecedented circumstances of the pandemic. METHODS: We interviewed HIV and behavioral healthcare providers, clinic leaders, and support service agencies that served clients impacted by both HIV and SMI. Seventeen key informants across three settings (HIV care settings, behavioral health care settings, and integrated or co-located care settings) were interviewed in 2022. Interviews focused on changes in clinical services, protocols, and care provision strategies during and at the onset of the COVID-19 pandemic. Interviews were transcribed and coded using thematic analysis. RESULTS: Commonly endorsed themes included both positive and negative changes in care and care provision during the pandemic. Negative impacts of the pandemic included the loss of physical space, exacerbated mental health needs and disengagement in HIV care, patient barriers to telehealth and the digital divide, and increased healthcare workforce burnout. Positive changes included improved healthcare delivery and care engagement through telehealth, new opportunities to provide a wide range of social services, paradoxical increases in engagement in HIV care for certain patients, and broad institution of workforce wellness practices. CONCLUSIONS: Though COVID-19 presented several complex barriers to care for providers serving patients with comorbid HIV and SMI, the increased flexibility afforded by telehealth and a greater focus on collaborative approaches to patient care may benefit this patient population in the future. Additionally, the focus on workforce wellness may serve to increase retention and avoid burnout among providers. The strategies and lessons learned through adapting to COVID-19 may be invaluable moving forward as healthcare systems respond to future pandemics.


Assuntos
COVID-19 , Infecções por HIV , Transtornos Mentais , Serviços de Saúde Mental , Pesquisa Qualitativa , SARS-CoV-2 , Humanos , COVID-19/epidemiologia , COVID-19/psicologia , Infecções por HIV/terapia , Infecções por HIV/psicologia , Infecções por HIV/epidemiologia , Transtornos Mentais/terapia , Transtornos Mentais/epidemiologia , Serviços de Saúde Mental/organização & administração , Pandemias , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Comorbidade
3.
Pediatr Emerg Care ; 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38713849

RESUMO

OBJECTIVES: Youth suicide is a pressing global concern. Prior research has developed evidence-driven clinical pathways to screen and identify suicide risk among pediatric patients in outpatient clinics, emergency departments (ED) and inpatient hospital units. However, the feasibility of implementing these pathways remains to be established. Here, we share the results of a hospital-wide "youth suicide risk screening pathway" implementation trial at an urban academic pediatric hospital to address this gap. METHODS: A 3-tier "youth suicide risk screening pathway" using The Ask Suicide-Screening Questions (ASQ) was implemented for patients aged 10 to 26 years who received care at an urban academic pediatric hospital's emergency department or inpatient units. We retrospectively reviewed implementation outcomes of this pathway from January 1 to August 31, 2019. The feasibility of this implementation was measured by assessing the pathway's degree of execution, fidelity, resource utilization, and acceptability. RESULTS: Of 4108 eligible patient encounters, 3424 (83%) completed the screen. Forty-eight (1%) screened acute positive, 263 (8%) screened nonacute positive and 3113 (91%) screened negative. Patients reporting positive suicide risk were more likely to be older and female, although more males required specialty mental health evaluations. Pathway fidelity was 83% among all positive screens and 94% among acute positive screens. The clinical pathway implementation required 16 hours of provider training time and was associated with slightly longer length of stay for inpatients that screened positive (4 vs 3 days). Sixty-five percent of nurses and 78% of social work providers surveyed supported participation in this effort. CONCLUSIONS: It is feasible to implement a youth suicide risk screening pathway without overburdening the system at an urban academic pediatric hospital.

4.
J Med Internet Res ; 25: e40635, 2023 06 08.
Artigo em Inglês | MEDLINE | ID: mdl-37146178

RESUMO

BACKGROUND: During the COVID-19 pandemic, health care systems were faced with the urgent need to implement strategies to address the behavioral health needs of health care workers. A primary concern of any large health care system is developing an easy-to-access, streamlined system of triage and support despite limited behavioral health resources. OBJECTIVE: This study provides a detailed description of the design and implementation of a chatbot program designed to triage and facilitate access to behavioral health assessment and treatment for the workforce of a large academic medical center. The University of California, San Francisco (UCSF) Faculty, Staff, and Trainee Coping and Resiliency Program (UCSF Cope) aimed to provide timely access to a live telehealth navigator for triage and live telehealth assessment and treatment, curated web-based self-management tools, and nontreatment support groups for those experiencing stress related to their unique roles. METHODS: In a public-private partnership, the UCSF Cope team built a chatbot to triage employees based on behavioral health needs. The chatbot is an algorithm-based, automated, and interactive artificial intelligence conversational tool that uses natural language understanding to engage users by presenting a series of questions with simple multiple-choice answers. The goal of each chatbot session was to guide users to services that were appropriate for their needs. Designers developed a chatbot data dashboard to identify and follow trends directly through the chatbot. Regarding other program elements, website user data were collected monthly and participant satisfaction was gathered for each nontreatment support group. RESULTS: The UCSF Cope chatbot was rapidly developed and launched on April 20, 2020. As of May 31, 2022, a total of 10.88% (3785/34,790) of employees accessed the technology. Among those reporting any form of psychological distress, 39.7% (708/1783) of employees requested in-person services, including those who had an existing provider. UCSF employees responded positively to all program elements. As of May 31, 2022, the UCSF Cope website had 615,334 unique users, with 66,585 unique views of webinars and 601,471 unique views of video shorts. All units across UCSF were reached by UCSF Cope staff for special interventions, with >40 units requesting these services. Town halls were particularly well received, with >80% of attendees reporting the experience as helpful. CONCLUSIONS: UCSF Cope used chatbot technology to incorporate individualized behavioral health triage, assessment, treatment, and general emotional support for an entire employee base (N=34,790). This level of triage for a population of this size would not have been possible without the use of chatbot technology. The UCSF Cope model has the potential to be scaled, adapted, and implemented across both academically and nonacademically affiliated medical settings.


Assuntos
COVID-19 , Humanos , Pandemias , Inteligência Artificial , Pessoal de Saúde , Comunicação
5.
Alzheimers Dement ; 19(8): 3426-3434, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36800287

RESUMO

INTRODUCTION: Black students attending predominantly White institutions (PWIs) versus historically Black colleges and universities (HBCUs) report more harmful discrimination and develop worse mental health outcomes, potentially offsetting the established benefits of college for lowering dementia incidence. METHODS: Black participants in two cohorts (the Kaiser Healthy Aging and Diverse Life Experiences [KHANDLE] and the Study of Healthy Aging in African Americans [STAR]) who had attended college (N = 716) self-reported the college name (classified as HBCU vs. PWI) and completed three waves of executive function (EF) and verbal episodic memory (VEM) assessments. HBCU effects on cognitive level and decline were estimated using adjusted linear mixed-effects models. RESULTS: HBCU (vs. PWI) attendees averaged better EF (ß = 0.05 [-0.22, 0.32]) and VEM (ß = 0.21 [-0.06, 0.46]) at age 70 though neither association was statistically significant. HBCU attendance was associated with slightly faster VEM decline (ß = -0.03 [-0.05, 0.00]). DISCUSSION: Harmonized analyses with larger studies are needed to estimate important effects of HBCU attendance. HIGHLIGHTS: Higher education is robustly linked to lower dementia risk, yet Black-White inequities persist among college-educated adults. Black students attending predominantly White institutions (PWIs) versus historically Black colleges and universities (HBCUs) report more harmful discrimination and develop worse mental health outcomes, which may offset the established benefits of college for lowering dementia incidence. HBCU (vs. non-HBCU) attendees averaged better executive function and verbal episodic memory (VEM) at average age 70, though confidence intervals were wide and associations were not statistically significant, and averaged slightly faster decline in VEM. Harmonized analyses using larger nationally representative studies are likely needed to avoid underestimating the health effects of HBCU attendance.


Assuntos
Disfunção Cognitiva , Demência , Envelhecimento Saudável , Humanos , Adulto , Idoso , Universidades , Acontecimentos que Mudam a Vida , Disfunção Cognitiva/epidemiologia
6.
Acad Psychiatry ; 2023 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-37821717

RESUMO

OBJECTIVE: This article aims to determine the prevalence of caregiving among faculty at a large academic health sciences institution, to examine the effect of gender and other demographic and professional covariates on caregiving status, and to explore caregiver-generated policy recommendations. METHOD: A cross-sectional, mixed-methods survey was collected from June through August 2018. Participants were faculty within one of the institution's health professional schools (dentistry, medicine, nursing, or pharmacy) receiving at least 50% salary from the institution. In addition to demographic information, we collected academic series and rank, and assessed association between covariates on caregiving status using logistic regression. We analyzed open-ended responses using thematic analysis to identify themes in caregiver barriers and policy suggestions. RESULTS: Among 657 eligible respondents, 11.4% were informal caregivers. Women were more likely to be caregivers than men (aOR 2.53, 95% CI: 1.40, 4.78), as were older faculty. Caregivers identified unsupportive climate or unrealistic work expectations, concern about career advancement, insufficient information about policies, and concern about colleague burden as barriers to support. Suggestions for workplace support included improved leave policies, increased flexibility, caregiver resource support, improved clarity and dissemination of policy information, and financial support. CONCLUSIONS: Women faculty are more likely to be informal caregivers, exacerbating disparities within academic medicine for promotion and retention among women faculty. Institutions might include caregiving status in annual burnout surveys to guide the development of structural support and policies for extension of family leave beyond childbearing (or catastrophic leave), flexibility in work hours, and subsidized eldercare services.

8.
Alzheimer Dis Assoc Disord ; 36(3): 215-221, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35791067

RESUMO

BACKGROUND: Higher education consistently predicts improved late-life cognition. Racial differences in educational attainment likely contribute to inequities in dementia risk. However, few studies of education and cognition have controlled for prospectively measured early-life confounders or evaluated whether the education late-life cognition association is modified by race/ethnicity. METHODS: Among 2343 Black and White Project Talent Aging Study participants who completed telephone cognitive assessments, we evaluated whether the association between years of education and cognition (verbal fluency, memory/recall, attention, and a composite cognitive measure) differed by race, and whether these differences persisted when adjusting for childhood factors, including the cognitive ability. RESULTS: In fully adjusted linear regression models, each additional year of education was associated with higher composite cognitive scores for Black [ß=0.137; 95% confidence interval (CI)=0.068, 0.206] and White respondents (ß=0.056; CI=0.034, 0.078) with an interaction with race ( P =0.03). Associations between education and memory/recall among Black adults (ß=0.036; CI=-0.037, 0.109) and attention among White adults (ß=0.022; CI=-0.002, 0.046) were nonsignificant. However, there were significant race-education interactions for the composite ( P =0.03) and attention measures ( P <0.001) but not verbal fluency ( P =0.61) or memory/recall ( P =0.95). CONCLUSION: Education predicted better overall cognition for both Black and White adults, even with stringent control for prospectively measured early-life confounders.


Assuntos
População Negra , Cognição , Adulto , Envelhecimento , Criança , Escolaridade , Etnicidade , Humanos
9.
BMC Psychiatry ; 22(1): 687, 2022 11 09.
Artigo em Inglês | MEDLINE | ID: mdl-36348280

RESUMO

BACKGROUND: Individuals with serious mental illness often do not receive guideline-concordant metabolic screening and human immunodeficiency virus (HIV) testing, contributing to increased morbidity and premature mortality. This study evaluates the effectiveness of CRANIUM (Cardiometabolic Risk Assessment and treatment through a Novel Integration model for Underserved populations with Mental illness), an intervention to increase metabolic screening and HIV testing among patients with serious mental illness in a community mental health clinic compared to usual care. METHODS: The study used a quasi-experimental design, prospectively comparing a preventive care screening intervention at one community mental health clinic (n = 536 patients) to usual care at the remaining clinics within an urban behavioural health system (n = 4,847 patients). Psychiatrists at the intervention site received training in preventive health screening and had access to a primary care consultant, screening and treatment algorithms, patient registries, and a peer support specialist. Outcomes were the change in screening rates of A1c, lipid, and HIV testing post-intervention at the intervention site compared to usual care sites. RESULTS: Rates of lipid screening and HIV testing increased significantly at the intervention site compared to usual care, with and without multivariable adjustment [Lipid: aOR 1.90, 95% CI 1.32-2.75, P = .001; HIV: aOR 23.42, 95% CI 5.94-92.41, P < .001]. While we observed a significant increase in A1c screening rates at the intervention site, this increase did not persist after multivariable adjustment (aOR 1.37, 95% CI .95-1.99, P = .09). CONCLUSIONS: This low-cost, reverse integrated care model targeting community psychiatrist practices had modest effects on increasing preventive care screenings, with the biggest effect seen for HIV testing rates. Additional incentives and structural supports may be needed to further promote screening practices for individuals with serious mental illness.


Assuntos
Infecções por HIV , Saúde Mental , Humanos , Hemoglobinas Glicadas , Infecções por HIV/diagnóstico , Teste de HIV , Crânio , Lipídeos
10.
Ann Pharmacother ; 55(4): 452-458, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32885983

RESUMO

BACKGROUND: HIV infection is more prevalent among people with severe mental illness (SMI) than in the general population. People with SMI may lack access to recommended antiretroviral therapy (ART), and inpatient psychiatric admissions may be opportunities to ensure that individuals receive recommended treatment. OBJECTIVE: To evaluate ART prescription patterns on an inpatient psychiatry service. METHODS: In this retrospective, observational study, patient and admission characteristics and ART prescriptions were obtained for 248 HIV-positive inpatients between 2006 and 2012. Receipt of any ART, any recommended ART regimen, and ART with potentially harmful adverse events and drug interactions were examined. General estimating equation models were used to evaluate prescription patterns in relation to patient and admission characteristics. RESULTS: ART was prescribed at 39% of discharges and increased by 51% during the study. Prescription was more common in admissions with an AIDS diagnosis and age greater than 29 years and less common in admissions associated with a psychotic diagnosis and shorter inpatient stays. When ART was prescribed, regimens were consistent with guideline recommendations 91% of the time. Prescription of potentially harmful regimens was limited. CONCLUSION AND RELEVANCE: In an acute inpatient psychiatry setting in an urban HIV/AIDS epicenter, where psychotic disorders and brief and involuntary admissions were the norm, guideline-recommended ART regimens were prescribed at almost 60% of discharges by the end of the study. Future studies should explore interventions to increase ART for high-risk subpopulations with SMI, including younger individuals or those with brief inpatient psychiatry hospitalizations.


Assuntos
Antirretrovirais/uso terapêutico , Infecções por HIV/tratamento farmacológico , Hospitais Urbanos/tendências , Pacientes Internados , Transtornos Mentais/tratamento farmacológico , Alta do Paciente/tendências , Síndrome da Imunodeficiência Adquirida/tratamento farmacológico , Síndrome da Imunodeficiência Adquirida/epidemiologia , Síndrome da Imunodeficiência Adquirida/psicologia , Adolescente , Adulto , Fármacos Anti-HIV/uso terapêutico , Prescrições de Medicamentos , Feminino , Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Hospitalização/tendências , Humanos , Pacientes Internados/psicologia , Masculino , Transtornos Mentais/epidemiologia , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Estudos Retrospectivos , Adulto Jovem
11.
Psychiatr Q ; 92(2): 601-607, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-32829448

RESUMO

To assess whether primary care medical homes (PCMHs) are accurately identified for patients receiving care in a specialty mental health clinic within an integrated public delivery system. This study reviewed the electronic records of patients in a large urban mental health clinic. The study defined 'matching PCMH' if the same primary care clinic was listed in both the mental health and medical electronic records. This study designated all others as 'PCMH unknown.' This study assessed whether demographic factors predicted PCMH status using chi-square tests. Among 229 patients (66% male; mean age 49; 36% White, 30% Black, and 17% Asian), 72% had a matching PCMH. Sex, age, race, psychiatric diagnosis, and psychotropic medication use were not associated with matching PCMH. To improve care coordination and health outcomes for people with severe mental illness, greater efforts are needed to ensure the accurate designation of PCMHs in all mental health patient electronic records.


Assuntos
Transtornos Mentais/terapia , Serviços de Saúde Mental , Atenção Primária à Saúde , Registros Eletrônicos de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente
12.
Acad Psychiatry ; 45(2): 180-184, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33174107

RESUMO

OBJECTIVE: Although women attend medical school and residency at similar rates to men, they experience lower levels of academic career advancement than men. To inform national gender equity efforts, the authors conducted a qualitative study to explore potential gender differences in the career experiences of junior research faculty at a premier research institution. METHODS: Focus group discussions were conducted among women and men junior research faculty at the School of Medicine at an urban public research university. Participants were early mentored career development award recipients (K-awardees). Two same-gender focus groups of nine women and six men were conducted. Discussions focused on two domains: barriers to maintaining a research career and facilitators for research career development. Data were analyzed using ATLAS.ti and content analysis methods. RESULTS: Both women and men identified a challenging funding environment, difficulty bridging the salary gap, and lack of institutional support as barriers to maintaining their research careers. Women perceived two primary barriers to their career advancement that were different from their male counterparts: They were more likely to feel undervalued at the institution and to experience significant strains related to both childbearing and childcare. Women also reported receiving inadequate mentorship, having poor negotiation skills, and experiencing a lack of negotiation opportunities. CONCLUSIONS: Academic research institutions should consider interventions that provide financial, emotional, and practical support to women research faculty, particularly during their childbearing and childrearing years.


Assuntos
Centros Médicos Acadêmicos , Docentes de Medicina , Mobilidade Ocupacional , Feminino , Humanos , Masculino , Mentores , Pesquisadores , Faculdades de Medicina
14.
J Gen Intern Med ; 35(1): 160-166, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31705468

RESUMO

BACKGROUND: Diabetes prevalence is twice as high among people with severe mental illness (SMI) when compared to the general population. Despite high prevalence, care outcomes are not well understood. OBJECTIVE: To compare diabetes health outcomes received by people with and without comorbid SMI, and to understand demographic factors associated with poor diabetes control among those with SMI. DESIGN: Retrospective cohort study PARTICIPANTS: 269,243 adults with diabetes MAIN MEASURES: Primary outcomes included optimal glycemic control (A1c < 7) or poor diabetes control (A1c > 9) in 2014. Secondary outcomes included control of other cardiometabolic risk factors (hypertension, dyslipidemia, smoking) and recommended diabetes monitoring. KEY RESULTS: Among this cohort, people with SMI (N = 4,399), compared to those without SMI (N = 264,844), were more likely to have optimal glycemic control, adjusting for various covariates (adjusted relative risk (aRR) 1.25, 95% CI 1.21-1.28, p < .001) and less likely to have poor control (aRR 0.92, 95% CI 0.87-0.98, p = 0.012). Better blood pressure and lipid control was more prevalent among people with SMI when compared to those without SMI (aRR 1.03; 95% CI 1.02-1.05, p < .001; aRR 1.02; 95% CI 1.00-1.05, p = 0.044, respectively). No differences were observed in recommended A1c or LDL testing, but people with SMI were more likely to have blood pressure checked (aRR 1.02, 95% CI 1.02-1.03, p < .001) and less likely to receive retinopathy screening (aRR 0.80, 95% CI 0.71-0.91, p < .001) than those without SMI. Among people with diabetes and comorbid SMI, younger adults and Hispanics were more likely to have poor diabetes control. CONCLUSIONS: Adults with diabetes and comorbid SMI had better cardiometabolic control than people with diabetes who did not have SMI, despite lower rates of retinopathy screening. Among those with comorbid SMI, younger adults and Hispanics were more vulnerable to poor A1c control.


Assuntos
Diabetes Mellitus , Hipertensão , Transtornos Mentais , Adulto , Atenção à Saúde , Diabetes Mellitus/epidemiologia , Diabetes Mellitus/terapia , Humanos , Transtornos Mentais/epidemiologia , Transtornos Mentais/terapia , Estudos Retrospectivos
15.
Compr Psychiatry ; 103: 152197, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32992073

RESUMO

BACKGROUND: Social media holds exciting promise for advancing mental health research recruitment, however, the extent and efficacy to which these platforms are currently in use are underexplored. OBJECTIVE: A systematic review was conducted to characterize the current use and efficacy of social media in recruiting participants for mental health research. METHOD: A literature review was performed using MEDLINE, EMBASE, and PsychINFO. Only non-duplicative manuscripts written in the English language and published between 1/1/2004-3/31/2019 were selected for further screening. Data extracted included study type and design, participant inclusion criteria, social media platform, advertising strategy, final recruited sample size, recruitment location, year, monetary incentives, comparison to other recruitment methods if performed, and final cost per participant. RESULTS: A total of 176 unique studies that used social media for mental health research recruitment were reviewed. The majority of studies were cross-sectional (62.5%) in design and recruited adults. Facebook was overwhelmingly the recruitment platform of choice (92.6%), with the use of paid advertisements being the predominant strategy (60.8%). Of the reviewed studies, substance abuse (43.8%) and mood disorders (15.3%) were the primary subjects of investigation. In 68.3% of studies, social media recruitment performed as well as or better than traditional recruitment methods in the number and cost of final enrolled participants. The majority of studies used Facebook for recruitment at a median cost per final recruited study participant of $19.47. In 55.6% of the studies, social media recruitment was the more cost-effective recruitment method when compared to traditional methods (e.g., referrals, mailing). CONCLUSION: Social media appears to be an effective and economical recruitment tool for mental health research. The platform raises methodological and privacy concerns not covered in current research regulations that warrant additional consideration.


Assuntos
Saúde Mental , Mídias Sociais , Adulto , Publicidade , Estudos Transversais , Humanos , Projetos de Pesquisa
16.
J Allergy Clin Immunol ; 143(6): 2271-2278, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31178019

RESUMO

BACKGROUND: Caregivers of children with primary immunodeficiency disorders (PIDs) experience significant psychological distress during their child's hematopoietic cell transplantation (HCT) process. OBJECTIVES: This study aims to understand caregiver challenges and identify areas for health care system-level improvements to enhance caregiver well-being. METHODS: In this mixed-methods study caregivers of children with PIDs were contacted in August to November 2017 through online and electronic mailing lists of rare disease consortiums and foundations. Caregivers were invited to participate in an online survey assessing sociodemographic variables, the child's medical characteristics, psychosocial support use, and the World Health Organization-5 Well-Being Index. Open-ended questions about health care system improvements were included. Descriptive statistics and linear multivariate regression analyses were conducted. A modified content analysis method was used to code responses and identify emergent themes. RESULTS: Among the 80 caregiver respondents, caregivers had a median age of 34 years (range, 23-62 years) and were predominantly female, white, and married with male children given a diagnosis of severe combined immune deficiency. In the adjusted regression model lower caregiver well-being was significantly associated with lower household income and medical complications. Challenges during HCT include maintaining relationships with partners and the child's healthy sibling or siblings, managing self-care, and coping with feelings of uncertainty. Caregivers suggested several organizational-level solutions to enhance psychosocial support, including respite services, online connections to other PID caregivers, and bedside mental health services. CONCLUSIONS: Certain high-risk subpopulations of caregivers might need more targeted psychosocial support to reduce the long-term effect of the HCT experience on their well-being. Caregivers suggested several organizational-level solutions for provision of this support.


Assuntos
Cuidadores/estatística & dados numéricos , Transplante de Células-Tronco Hematopoéticas , Doenças da Imunodeficiência Primária/epidemiologia , Sistemas de Apoio Psicossocial , Estresse Psicológico/epidemiologia , Adulto , Criança , Atenção à Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doenças da Imunodeficiência Primária/terapia , Melhoria de Qualidade , Qualidade de Vida , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
17.
J Clin Immunol ; 39(8): 786-794, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31620947

RESUMO

BACKGROUND: We undertook a study to determine the impact of Wiskott Aldrich Syndrome (WAS) and X-linked thrombocytopenia (XLT) and their therapies upon the health-related quality of life (HRQOL) of patients and their families. MATERIALS AND METHODS: We undertook a survey of patients and their families, who self-identified as having either WAS or XLT. We assessed the PedsQL™ 4.0, the parent proxy form, and the family impact module. These results were compared with normative data from previously published reports. RESULTS: Sixty-eight patients (29 patients completed both the PedsQL™ 4.0 and the parent proxy form; 21 completed only the PedsQL™ 4.0; and 18 completed only the parent proxy form) were included. In contrast to patient-reported outcomes, parents of patients who had a bone marrow transplant (BMT) reported that their children had better QOL scores compared with those who did not (82.6 vs. 73.3, p = 0.023). The QOL of patients vs. previously published normative data showed decreases in patient scores for psychosocial health (72.62 vs. 86.58, p = < 0.001), emotional functioning (69.91 vs. 82.64, p = < 0.001), social functioning (77.55 vs. 91.56, p = < 0.001), and school functioning (70.46 vs. 85.67, p = < 0.001). The family impact study revealed deficits in emotional, social, and cognitive functioning, communication, and worry. CONCLUSION: These results show that patients with WAS/XLT are significantly impacted with respect to QOL. BMT offered a better QOL for patients according to parents, but not as reported by the patients. Future studies should incorporate QOL to provide more data and a better understanding of outcomes for long-term survivors and decision-making regarding BMT.


Assuntos
Doenças Genéticas Ligadas ao Cromossomo X/psicologia , Pais/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Trombocitopenia/psicologia , Síndrome de Wiskott-Aldrich/psicologia , Adolescente , Transplante de Medula Óssea , Cuidadores/psicologia , Criança , Pré-Escolar , Tomada de Decisões , Doenças Genéticas Ligadas ao Cromossomo X/complicações , Doenças Genéticas Ligadas ao Cromossomo X/imunologia , Doenças Genéticas Ligadas ao Cromossomo X/terapia , Humanos , Masculino , Inquéritos e Questionários/estatística & dados numéricos , Sobreviventes/psicologia , Trombocitopenia/complicações , Trombocitopenia/imunologia , Trombocitopenia/terapia , Síndrome de Wiskott-Aldrich/complicações , Síndrome de Wiskott-Aldrich/imunologia , Síndrome de Wiskott-Aldrich/terapia , Adulto Jovem
19.
Community Ment Health J ; 55(6): 979-982, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31102164

RESUMO

This study examined whether transitioning patients from oral antipsychotics (POs) to long-acting injectable antipsychotics (LAIs) helps patients achieve recovery-oriented goals. Data was extracted from San Francisco County's electronic medical record system for this retrospective pre-post observational study. Patients reflect a safety-net population treated in community-based mental health settings during 2015. The San Francisco Adult Strengths and Needs Assessment (SF ANSA), a measure of psychosocial functioning, was used to assess within-subject change when treated with POs versus LAIs. In our study sample (N = 77), LAI SF ANSA scores showed significant improvements in criminal behaviors (p = .017), medication adherence (p = .008), and spirituality (p = .028), and a non-significant trend for residential stability (p = .073). This is the first study to evaluate improvements in key psychosocial areas after treatment with LAIs. This work suggests that LAIs can be another tool for providers to help patients work towards their recovery-oriented goals.


Assuntos
Antipsicóticos/uso terapêutico , Esquizofrenia/tratamento farmacológico , Adulto , Idoso , Comportamento Criminoso/efeitos dos fármacos , Feminino , Humanos , Injeções , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , São Francisco , Resultado do Tratamento , População Urbana
20.
Palliat Support Care ; 17(4): 409-414, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30223912

RESUMO

OBJECTIVE: Caregivers for patients undergoing hematopoietic cell transplantation (HCT) are susceptible to significant psychosocial distress. This cross-sectional study aimed to describe psychosocial support services offered and used by caregivers of pediatric primary immune deficiency (PID) during HCT at 35 hospitals across North America. METHOD: Caregivers of pediatric patients with PID were recruited by e-mail to participate in an anonymous 140-question survey instrument between April and May 2016 (N = 171). RESULT: Of those meeting inclusion criteria (53%), family counseling services were only offered to fewer than half of caregivers (42%). Of the survey participants not offered counseling services, the majority desired family counseling (70%) and sibling counseling (73%). That said, when offered counseling, utilization rates were low, with 22% of caregivers using family counseling and none using sibling counseling. SIGNIFICANCE OF RESULTS: These results indicate the need to offer and tailor counseling services for families throughout the HCT process. Further research should focus on reducing barriers to utilization of counseling services such as offering bedside counseling services, online modalities, and/or financial assistance.


Assuntos
Cuidadores/psicologia , Família/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Doenças da Imunodeficiência Primária/complicações , Adulto , Idoso , Estudos Transversais , Feminino , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Masculino , Pessoa de Meia-Idade , América do Norte , Pediatria/métodos , Doenças da Imunodeficiência Primária/psicologia , Inquéritos e Questionários
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