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1.
Clin Gastroenterol Hepatol ; 22(4): 760-767.e1, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37544418

ABSTRACT

BACKGROUND: The overall value of hepatocellular carcinoma screening is defined by the balance of benefits and harms. Studies have only reported physical harms with none describing financial harms. METHODS: We conducted a multicenter pragmatic randomized clinical trial of hepatocellular carcinoma screening outreach among 2872 patients with cirrhosis from March 2018 to April 2021. Patients with positive or indeterminate results and matched patients with negative results completed surveys at baseline and at follow-up measuring financial harms via Cancer Self-Administered Questionnaire and financial burden via Comprehensive Score for Financial Toxicity Functional Assessment of Chronic Illness Therapy. Univariable and multivariable longitudinal regression analyses were performed to compare changes in financial harms across groups: true positive, true negative, false positive, and indeterminate. Semistructured interviews were conducted in a subset of patients, sampled by center and test result. RESULTS: Of 311 patients who completed at least 1 follow-up survey (75% response rate), 37 had true positive, 133 true negative, 64 false positive, and 77 indeterminate results. Financial harms increased in true positive and false positive patients with no significant changes noted among those with true negative or indeterminate results. At follow-up, 21.8% of patients reported moderate-severe financial burden, which was not significantly associated with test results. Semistructured interviews revealed variation in the frequency and severity of financial harms based on test results, with increased harm in those with false positive results. CONCLUSIONS: Financial harms of hepatocellular carcinoma screening vary by test result and can pose a barrier that must be considered when determining the optimal screening program.


Subject(s)
Carcinoma, Hepatocellular , Liver Neoplasms , Humans , Carcinoma, Hepatocellular/diagnosis , Liver Neoplasms/diagnosis , Financial Stress , Liver Cirrhosis/complications , Liver Cirrhosis/diagnosis
2.
Hepatology ; 79(1): 107-117, 2024 Jan 01.
Article in English | MEDLINE | ID: mdl-37401857

ABSTRACT

BACKGROUND AND AIMS: The value of HCC surveillance is determined by the balance between benefits and harms; however, no studies have enumerated psychological harms. APPROACH AND RESULTS: We fielded surveys measuring psychological harms to patients with cirrhosis in a multicenter randomized trial of HCC surveillance outreach. All patients with positive or indeterminate surveillance results and matched patients with negative results were invited to complete surveys measuring (1) depression through the Patient Health Questionnaire-ninth version, (2) anxiety through State-Trait Anxiety Inventory, (3) HCC-specific worry through Psychological Consequences Questionnaire, and (4) decisional regret. Patients were classified into 4 groups: true positive (TP), false positive (FP), indeterminate, and true negative (TN). Multivariable longitudinal regression analysis using the generalized estimating equation method was performed to compare the means of measures across groups. We conducted 89 semistructured interviews in a subset of patients stratified by health system and test results. Of 2872 patients in the trial, 311 completed 1+ follow-up survey (63 FP, 77 indeterminate, 38 TP, and 133 TN). Moderate depression decreased in TN patients, increased in TP, and had intermittent but mild increases in those with FP and indeterminate results. High anxiety temporarily increased in patients with TP results but resolved over time and was stable in those with FP and indeterminate results. Decisional regret was low and did not differ across groups. In semistructured interviews, patients reported apprehension, anxiety, emotional distress, and coping related to HCC surveillance. CONCLUSIONS: Psychological harms of HCC surveillance appear mild but differ by test result. Future research should determine the impact of psychological harms on the value of HCC surveillance programs.


Subject(s)
Carcinoma, Hepatocellular , Liver Neoplasms , Humans , Carcinoma, Hepatocellular/epidemiology , Liver Neoplasms/epidemiology , Liver Cirrhosis/complications , Anxiety , Surveys and Questionnaires
3.
Ann Otol Rhinol Laryngol ; 132(11): 1443-1452, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37005576

ABSTRACT

OBJECTIVES: To qualitatively characterize pretreatment head and neck cancer (HNC) patients' supportive care (SC) needs, attitudes toward SC, and barriers to SC utilization. MATERIALS AND METHODS: A prospective, nested, bi-institutional, cross-sectional pilot study design was employed. Participants were sub-selected from a representative sample of 50 patients newly diagnosed with mucosal or salivary gland HNC or sarcoma of the head and neck. Eligibility criteria included reporting ≥2 unmet needs (according to the Supportive Care Needs Survey-Short Form 34) or clinically-significant distress (National Comprehensive Cancer Network Distress Thermometer score ≥4). Semi-structured interviews were performed prior to initiation of oncologic treatment. Audio-recorded interviews were transcribed and thematically analyzed using NVivo 12.0 (QSR Australia). Thematic findings and representative quotes were interpreted by the entire research team. RESULTS: Twenty-seven patients were interviewed. One-third were treated at the county safety-net hospital and the remainder were treated at the university health system. An equal proportion of patients presented with oral cavity, oropharyngeal, and laryngeal or other tumors. Two significant findings were identified on semi-structured interviews. First, patients did not perceive the relevance of SC prior to treatment. Second, anxiety surrounding the HNC diagnosis and impending treatment dominated in the pretreatment phase. CONCLUSION: Improved HNC patient education about the relevance and importance of SC in the pretreatment setting is needed. Integration of social work or psychological services in HNC clinics is warranted to address patients' cancer-related worry-a discrete, dominant pretreatment SC need.


Subject(s)
Head and Neck Neoplasms , Humans , Cross-Sectional Studies , Prospective Studies , Pilot Projects , Surveys and Questionnaires , Head and Neck Neoplasms/therapy
4.
Public Health Nutr ; 25(4): 1027-1037, 2022 04.
Article in English | MEDLINE | ID: mdl-34865672

ABSTRACT

OBJECTIVE: The COVID-19 pandemic initially doubled the rates of food insecurity across the USA and tripled rates among households with children. Despite the association among food insecurity, chronic disease and psychological distress, narratives depicting the experiences of already food insecure populations are notably underrepresented in the literature. The current study assessed the impact of COVID-19 on clients of a food pantry who were also enrolled in the Supplemental Nutrition Assistance Program (SNAP). DESIGN: A qualitative study probing the effects of the pandemic on daily living, food needs, food buying and food insecurity. Interview transcripts were analysed using a combined deductive and inductive approach. SETTING: Interviews were conducted via telephone between May and June of 2020. PARTICIPANTS: Equal numbers of English- and Spanish-speaking clients (n 40 total). RESULTS: Three main findings emerged: (1) the pandemic increased economic distress, such as from job loss or increased utility bills due to sustained home occupancy and (2) the pandemic increased food needs, food prices and food shortages. In combination with economic stressors, this led to greater food insecurity; (3) increased economic stress and food insecurity contributed to increased psychological stress, such as from fear of infection, isolation and children being confined at home. CONCLUSIONS: Despite federal legislation and state and local programmes to alleviate food insecurity, COVID-19 exacerbated economic hardship, food insecurity and psychological distress among urban SNAP and food pantry clients. Additional research is needed to identify the most effective policies and programmes to ameliorate the short- and long-term health and economic inequities exacerbated by the pandemic.


Subject(s)
COVID-19 , Food Assistance , Psychological Distress , COVID-19/epidemiology , Child , Food Insecurity , Food Supply , Humans , Pandemics
5.
Community Ment Health J ; 55(3): 440-447, 2019 04.
Article in English | MEDLINE | ID: mdl-30825072

ABSTRACT

While there are high rates of food insecurity among individuals with serious mental illnesses, and among African Americans, there is very little research on the ways African Americans in public-sector mental health services cope with food insecurity. This research paper presents qualitative data from a mixed methods study on the prevalence and management of food insecurity among African Americans using public sector mental health services. We interviewed 21 people about their everyday experiences of food insecurity and strategies they used to cope. While participants reported experiencing high levels of food insecurity, they also described the use of communal strategies to help them cope, including sharing food and cooking meals jointly, which seemed to reduce the negative effects of living with high levels of food insecurity as well as a serious mental illness. Policy innovations like communal gardens and kitchens provided through public mental health services may be particularly helpful.


Subject(s)
Adaptation, Psychological , Black or African American/psychology , Community Mental Health Services , Food Supply , Public Sector , Adolescent , Adult , Aged , District of Columbia/epidemiology , Female , Humans , Interviews as Topic , Male , Mental Disorders/epidemiology , Mental Disorders/psychology , Mental Health , Middle Aged , Prevalence , Qualitative Research , Young Adult
6.
Psychiatr Serv ; 70(3): 184-190, 2019 03 01.
Article in English | MEDLINE | ID: mdl-30554560

ABSTRACT

OBJECTIVE: This study elicited factors that shaped treatment decision making for young adults and their key supporters after an initial hospitalization for psychosis to generate hypotheses about how to improve service engagement. METHODS: This prospective, longitudinal, ethnographic study (using home visits, interviews, and hospital-based fieldwork) asked what mattered to 18 young adults primarily from racial-ethnic minority groups and 19 of their self-identified key supporters (N=37) as they made decisions about treatment during the 12-week critical period after an initial hospitalization for psychosis. The analytical approach used inductive coding and constructivist grounded theory methods to analyze interview transcripts and field notes from home visits and generate hypotheses about key factors that seemed to affect treatment decision making. Factors were ranked in order of frequency across all participants (overall, young adults only, and key supporters only). RESULTS: Among the 37 total participants (young adults and key supporters), more than two-thirds were concerned with getting back to normal, the insufficient mental health care on offer, police involvement in their pathway to care, feeling worse, and needing help with repairing strained relationships. More than one-half were concerned with how young adults would be able to live independently in the future, paying for mental health care, distrusting mental health diagnoses, managing social pressure to use substances, feeling disempowered by hospitalization experiences, and managing transportation challenges. CONCLUSIONS: To better engage young adults with early psychosis in care, including those from racial-ethnic minority groups, there is a need to design services that address the specific concerns of their everyday lives in the context of the initial hospitalization and posthospitalization period.


Subject(s)
Decision Making , Patient Acceptance of Health Care/ethnology , Patient Acceptance of Health Care/psychology , Psychotic Disorders/ethnology , Psychotic Disorders/psychology , Acculturation , Adolescent , Female , Hospitalization , Humans , Interviews as Topic , Male , Minority Groups , Prospective Studies , Psychotic Disorders/therapy , Texas , Young Adult
7.
Transcult Psychiatry ; 53(6): 766-782, 2016 12.
Article in English | MEDLINE | ID: mdl-28317468

ABSTRACT

This article considers the impact of the global mental health discourse on India's traditional healing systems. Folk mental health traditions, based in religious lifeways and etiologies of supernatural affliction, are overwhelmingly sought by Indians in times of mental ill-health. This is despite the fact that the postcolonial Indian state has historically considered the popularity of these indigenous treatments regressive, and claimed Western psychiatry as the only mental health system befitting the country's aspirations as a modern nation-state. In the last decade however, as global mental health concerns for scaling up psychiatric interventions and instituting bioethical practices in mental health services begin to shape India's mental health policy formulations, the state's disapproving stance towards traditional healing has turned to vehement condemnation. In present-day India, traditional treatments are denounced for being antithetical to global mental health tenets and harmful for the population, while biomedical psychiatry is espoused as the only legitimate form of mental health care. Based on ethnographic research in the Hindu healing temple of Balaji, Rajasthan, and analysis of India's mental health policy environment, I demonstrate how the tenor of the global mental health agenda is negatively impacting the functioning of the country's traditional healing sites. I argue that crucial changes in the therapeutic culture of the Balaji temple, including the disappearance of a number of key healing rituals, are consequences of global mental health-inspired policy in India which is reducing the plural mental health landscape.


Subject(s)
Global Health/ethnology , Medicine, Traditional , Mental Health Services , Mental Health/ethnology , Religion and Psychology , Humans , India/ethnology
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