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1.
BMC Palliat Care ; 23(1): 103, 2024 Apr 18.
Article En | MEDLINE | ID: mdl-38637806

BACKGROUND: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. METHODS: For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. RESULTS: We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. CONCLUSIONS: These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model.


Hospice and Palliative Care Nursing , Lung Diseases , Telemedicine , Humans , Palliative Care/methods , Quality of Life , Telemedicine/methods , Lung Diseases/therapy
2.
Article En | MEDLINE | ID: mdl-38673415

Children with mental illness commonly live with caregivers who suffer from mental illness. Integrated mental-health-treatment approaches can provide more convenient and comprehensive care for families. This case report describes family-based treatment (FBT) for one parent/child dyad. The parent was a 37-year-old female with a history of anxiety and major depressive disorder and concern for symptoms of attention-deficit/hyperactivity disorder (ADHD). The child was an 8-year-old female with generalized anxiety disorder and concern for ADHD and behavioral problems. The parent received individual cognitive behavioral therapy (CBT) and parent management training. The child received CBT. Both also received medication management. The FBT team met regularly for coordinated treatment planning. Self-reported assessments via the Child Behavior Checklist showed meaningful improvement; anxiety decreased to nonclinical range week 12 and depression decreased to nonclinical range week 8. Clinician assessments showed improvement for both patients. Though more time intensive, FBT can yield significant improvement, particularly for children. Pragmatic approaches to treatment planning are important to minimize barriers to FBT.


Attention Deficit Disorder with Hyperactivity , Cognitive Behavioral Therapy , Humans , Female , Child , Adult , Attention Deficit Disorder with Hyperactivity/therapy , Attention Deficit Disorder with Hyperactivity/psychology , Parents/psychology , Anxiety/therapy , Depression/therapy , Anxiety Disorders/therapy , Family Therapy/methods , Depressive Disorder, Major/therapy
4.
Prim Health Care Res Dev ; 23: e21, 2022 03 28.
Article En | MEDLINE | ID: mdl-35343417

BACKGROUND: Newly arriving Syrian refugees can present with specific health characteristics and medical conditions when entering the United States. Given the lack of epidemiological data available for the refugee populations, our study examined the demographic features of Syrian refugees resettled in the state of Kentucky. Specifically, we examined mental and physical health clinical data in both pre-departure health screenings and domestic Refugee Health Assessments (RHA; Kentucky Office for Refugees, n.d.) performed after resettlement. METHOD: The current study adopted a cross-sectional research design. We analyzed outcome data collected from participants from 2013 and 2015. Specifically, a comparative cross-sectional analysis was performed using clinical data from Syrian refugees who underwent an RHA as part of the resettlement process between January 2015 and August 2016. Those data were compared to data derived from refugees from other countries who resettled in Kentucky between 2013 and 2015. RESULTS: Mental health screenings using the Refugee Health Screener (RHS-15; Hollifield et al., 2013) found that 19.5% (n = 34) of adult Syrian refugees reported signs and symptoms from posttraumatic stress, depressive symptoms, and/or anxiety, and nearly 40% (n = 69) reported personal experiences of imprisonment or violence, and/or having witnessed someone experiencing torture or violence. Intestinal parasites and lack of immunity to varicella were the most prevalent communicable diseases among Syrian refugees. Dental abnormalities and decreased visual acuity account for the first and second most prevalent non-communicable conditions. When comparing these results to all refugees arriving during the same years, significant differences arose in demographic variables, social history, communicable diseases, and non-communicable diseases. CONCLUSION: This study provides an initial health profile of Syrian refugees resettling in Kentucky, which reflects mental health as a major healthcare concern. Posttraumatic stress and related symptoms are severe mental health conditions among Syrian refugees above and beyond other severe physical problems.


Refugees , Adult , Anxiety , Cross-Sectional Studies , Humans , Mental Health , Refugees/psychology , Syria
5.
Life (Basel) ; 12(3)2022 Mar 19.
Article En | MEDLINE | ID: mdl-35330204

Despite the widespread availability of effective vaccines, new cases of infection with severe acute respiratory syndrome coronavirus-2, the cause of coronavirus disease 2019 (COVID-19), remain a concern in the settings of vaccine hesitancy and vaccine breakthrough. In this randomized, controlled, phase 2 trial, we hypothesized that high-dose ascorbic acid delivered intravenously to achieve pharmacologic concentrations may target the high viral phase of COVID-19 and thus improve early clinical outcomes. Sixty-six patients admitted with COVID-19 and requiring supplemental oxygen were randomized to receive either escalating doses of intravenous ascorbic acid plus standard of care or standard of care alone. The demographic and clinical characteristics were well-balanced between the two study arms. The primary outcome evaluated in this study was clinical improvement at 72 h after randomization. While the primary outcome was not achieved, point estimates for the composite outcome and its individual components of decreased use of supplemental oxygen, decreased use of bronchodilators, and the time to discharge were all favorable for the treatment arm. Possible favorable effects of ascorbic acid were most apparent during the first 72 h of hospitalization, although these effects disappeared over the course of the entire hospitalization. Future larger trials of intravenous ascorbic acid should be based on our current understanding of COVID-19 with a focus on the potential early benefits of ascorbic in hospitalized patients.

6.
Cell Rep Med ; 1(9): 100158, 2020 12 22.
Article En | MEDLINE | ID: mdl-33377129

Geographically dispersed patients, inconsistent treatment tracking, and limited infrastructure slow research for many orphan diseases. We assess the feasibility of a patient-powered study design to overcome these challenges for Castleman disease, a rare hematologic disorder. Here, we report initial results from the ACCELERATE natural history registry. ACCELERATE includes a traditional physician-reported arm and a patient-powered arm, which enables patients to directly contribute medical data and biospecimens. This study design enables successful enrollment, with the 5-year minimum enrollment goal being met in 2 years. A median of 683 clinical, laboratory, and imaging data elements are captured per patient in the patient-powered arm compared with 37 in the physician-reported arm. These data reveal subgrouping characteristics, identify off-label treatments, support treatment guidelines, and are used in 17 clinical and translational studies. This feasibility study demonstrates that the direct-to-patient design is effective for collecting natural history data and biospecimens, tracking therapies, and providing critical research infrastructure.


Data Collection , Rare Diseases/therapy , Registries/statistics & numerical data , Research Design , Adolescent , Adult , Aged , Aged, 80 and over , Castleman Disease/diagnosis , Castleman Disease/therapy , Child , Child, Preschool , Data Collection/standards , Female , Humans , Infant , Male , Middle Aged , Rare Diseases/diagnosis , Research Design/standards , Young Adult
7.
JCI Insight ; 5(9)2020 05 07.
Article En | MEDLINE | ID: mdl-32376796

The TAFRO clinical subtype of idiopathic multicentric Castleman disease (iMCD-TAFRO) is a rare hematologic illness involving episodic disease flares of thrombocytopenia, anasarca, fever, reticulin myelofibrosis, renal dysfunction, and organomegaly (TAFRO) and progressive multiple organ dysfunction. We previously showed that the mTOR signaling pathway is elevated in lymph nodes of iMCD-TAFRO patients and that an mTOR inhibitor is effective in a small cohort of patients. However, the upstream mechanisms, cell types, and mediators involved in disease pathogenesis remain unknown. Here, we developed a targeted approach to identify candidate cellular drivers and mechanisms in iMCD-TAFRO through cellular and transcriptomic studies. Using paired iMCD-TAFRO PBMC samples collected during flare and remission, we identified T cell activation and alterations in NK cell and monocyte subset frequencies during iMCD-TAFRO flare. These changes were associated with increased Type I IFN (IFN-I) response gene signatures across CD8+ T cells, NK cells, and monocytes. Finally, we found that IFN-ß stimulation of monocytes and T cells from iMCD-TAFRO patient remission samples induced increased mTOR activation compared with healthy donors, and this was abrogated with either mTORC1 or JAK1/2 inhibition. The data presented here support a potentially novel role for IFN-I signaling as a driver of increased mTOR signaling in iMCD-TAFRO.


CD8-Positive T-Lymphocytes , Castleman Disease/immunology , Interferon Type I/immunology , Killer Cells, Natural , Monocytes , TOR Serine-Threonine Kinases/immunology , Adolescent , Adult , Aged , CD8-Positive T-Lymphocytes/cytology , CD8-Positive T-Lymphocytes/immunology , Female , Humans , Killer Cells, Natural/cytology , Killer Cells, Natural/immunology , Longitudinal Studies , Male , Middle Aged , Monocytes/cytology , Monocytes/immunology
8.
Infect Dis Ther ; 9(3): 435-449, 2020 Sep.
Article En | MEDLINE | ID: mdl-32462545

The emergence of SARS-CoV-2/2019 novel coronavirus (COVID-19) has created a global pandemic with no approved treatments or vaccines. Many treatments have already been administered to COVID-19 patients but have not been systematically evaluated. We performed a systematic literature review to identify all treatments reported to be administered to COVID-19 patients and to assess time to clinically meaningful response for treatments with sufficient data. We searched PubMed, BioRxiv, MedRxiv, and ChinaXiv for articles reporting treatments for COVID-19 patients published between 1 December 2019 and 27 March 2020. Data were analyzed descriptively. Of the 2706 articles identified, 155 studies met the inclusion criteria, comprising 9152 patients. The cohort was 45.4% female and 98.3% hospitalized, and mean (SD) age was 44.4 years (SD 21.0). The most frequently administered drug classes were antivirals, antibiotics, and corticosteroids, and of the 115 reported drugs, the most frequently administered was combination lopinavir/ritonavir, which was associated with a time to clinically meaningful response (complete symptom resolution or hospital discharge) of 11.7 (1.09) days. There were insufficient data to compare across treatments. Many treatments have been administered to the first 9152 reported cases of COVID-19. These data serve as the basis for an open-source registry of all reported treatments given to COVID-19 patients at www.CDCN.org/CORONA . Further work is needed to prioritize drugs for investigation in well-controlled clinical trials and treatment protocols.

9.
BMC Psychiatry ; 13: 188, 2013 Jul 13.
Article En | MEDLINE | ID: mdl-23849084

BACKGROUND: Domestic violence and abuse is threatening behavior, violence/abuse used by one person to control the other within an intimate or family-type relationship. Women experience more severe physical and sexual domestic violence and abuse and more mental health consequences than men. The current study aims at exploring of the role of hypothalamic-pituitary-adrenocortical axis activity in abuse impact on women's mental health. STUDY OBJECTIVES: 1) To evaluate diurnal cortisol slope, cortisol awakening response, and the mean cortisol concentration in women with a current or recent experience of abuse; 2) To estimate whether cortisol secretion is associated with type, severity, duration and cessation of abuse; 3) To investigate whether cortisol acts as mediator between abuse and mental health condition; 4) To examine whether there is any distinction in cortisol levels between those women exposed to both childhood abuse and domestic violence and abuse and those experienced only the latter. 4) To explore whether cortisol secretion differs between women living in refuge and those still living in the community. METHODS/DESIGN: To meet study objectives 128 women will be recruited in a domestic violence agency and local communities. Baseline and 3-month follow-up measures will be taken over 6 months after recruitment. Each assessment will include: (1) standardized self-administered questionnaires to evaluate socio-demographics, experience of violence and abuse, mental and physical health; (2) weight and height measurement; (3) self-completion of wakening, post-wakening and evening saliva samples. Saliva will be analysed for cortisol and cortisone using Ultra performance liquid chromatography-tandem mass spectrometry. We will compare diurnal cortisol parameters between non-abused controls and abuse survivors with and without mental health conditions. First following descriptive statistics for all the cortisol and mental health outcomes, relationships between them will be investigated using appropriate regression models. Second, these techniques will be used to investigate the extent to which cortisol measures act as potential mediators between type, severity, duration of abuse and mental disorders. DISCUSSION: Results of the study will increase our understanding of the pathophysiological mechanisms of abuse-related mental health disorders in women and inform researchers and practitioners on the possibility of using salivary cortisol as a biological marker for prognosis, diagnosis, and treatment evaluation among abuse survivors. TRIAL REGISTRATION: ClinicalTrials.gov registration NCT01632553.


Domestic Violence/psychology , Hydrocortisone/analysis , Saliva/chemistry , Spouse Abuse/psychology , Stress, Psychological/diagnosis , Women's Health , Adult , Biomarkers/analysis , Clinical Protocols , Female , Humans , Mental Health , Middle Aged , Research Design , Severity of Illness Index , Social Environment , Stress, Psychological/metabolism , Stress, Psychological/psychology , Surveys and Questionnaires , Tandem Mass Spectrometry
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