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1.
Article in English | MEDLINE | ID: mdl-37389407

ABSTRACT

Objective: Extreme Risk Protection Orders (ERPO) allow a petitioner to file a civil order to temporarily restrict access to firearms among individuals ("respondents") deemed to be at extreme risk of harming themselves, others, or both. Although unable to file ERPOs for their clients in most states, health professionals may play a pivotal role in the ERPO process by recommending an eligible petitioner initiate the process. We describe the process of filing an ERPO when a healthcare, mental health, or social service professional contacted an ERPO petitioner. Method: Court documents of ERPOs involving health professionals in Washington State between December 8th, 2016 and May 10th, 2019 were qualitatively analyzed (n=24). We constructed pen portraits from the documents and analyzed them using an inductive qualitative thematic approach. Results: Themes included factors influencing the process by which each professional evaluated respondent behaviors, factors considered during assessment, factors influencing interpretation of respondent behaviors and subsequent provider response during a crisis. These influenced the outcome of the crisis event that led to ERPO filing. Conclusions: Each professional group differed in their approach to risk assessment of respondent behaviors. Strategies to better coordinate and align approaches may improve the ERPO process.

2.
Biomed Res Int ; 2023: 7533111, 2023.
Article in English | MEDLINE | ID: mdl-36748060

ABSTRACT

Objective: Voxelotor is a first-in-class sickle hemoglobin-polymerization inhibitor that was approved in 2019 by the US Food and Drug Administration for treatment of patients with sickle cell disease (SCD) aged ≥12 years; in 2021, the approval was extended to children with SCD aged 4 to 11 years. Additionally, both the Ministry of Health and Prevention for the United Arab Emirates and the European Commission granted marketing authorization for voxelotor in September 2021 and February 2022, respectively, for treatment of SCD in adults and pediatric patients aged ≥12 years. Thus, additional information on the patient experience with voxelotor would be useful for patients, caregivers, and healthcare professionals alike. The purpose of this study was to conduct semistructured interviews in an effort to understand the experiences and perspectives of voxelotor-treated patients with SCD. Methods: One-time semistructured interviews with adults, adolescents, and children with SCD and their primary caregivers were conducted in the United States. Twenty-three adults and adolescents were recruited across 4 clinical sites, and 10 children-caregiver dyads were recruited from a single site. The interview was designed to elicit patient perspectives on symptomatic changes with voxelotor and the impact of treatment on patients' perceived health-related quality of life. Individual interview transcripts were analyzed using a thematic analytic approach, and concept saturation was assessed in both cohorts. Results: Most patients reported improvements in their SCD symptoms with voxelotor treatment, specifically regarding pain crises, jaundice, and fatigue. Almost all patients experienced improvements in self-reported health-related quality of life with voxelotor treatment. Conclusions: This study provides patient and caregiver perspectives on the symptomatic benefits of voxelotor treatment. These findings not only highlight the benefits of voxelotor treatment in improving symptoms and increasing health-related quality of life across the entire SCD population but also can inform further research on SCD-specific patient-reported outcomes.


Subject(s)
Anemia, Sickle Cell , Quality of Life , Adolescent , Humans , Adult , Child , United States , Anemia, Sickle Cell/drug therapy , Benzaldehydes , Qualitative Research
3.
Mol Genet Genomic Med ; 10(4): e1891, 2022 04.
Article in English | MEDLINE | ID: mdl-35138050

ABSTRACT

BACKGROUND: Achondroplasia, caused by a pathogenic variant in the fibroblast growth factor receptor 3 gene (FGFR3), leads to significant multisystem complications across the lifespan that may affect the health-related quality of life (HRQoL) of individuals and families living with the condition. METHODS: The objective of this qualitative study was to describe the HRQoL of children and adolescents with achondroplasia and their caregivers. Thirty-four caregivers and 12 adolescents from the United States and Spain participated in one of eight focus groups or completed an individual interview, which was audio-recorded and transcribed. Thematic analysis of qualitative data was performed to identify commonly occurring themes pertaining to HRQoL. RESULTS: Caregivers and adolescents described challenges with physical functioning and medical complications due to achondroplasia. Key challenges included difficulties performing activities of daily living, issues of accessibility, bullying, or unwanted attention in public, and negative effects on self-esteem. Caregivers were concerned about accessing appropriate medical care for their child, and also reported experiencing financial, relational, and emotional challenges in their families. Achondroplasia also affected individuals and their families in positive ways, including increasing empathy, receiving positive attention, and feeling supported by the achondroplasia community. CONCLUSIONS: These findings underscore the importance of regular assessments of HRQoL and the provision of psychosocial support to affected children and families.


Subject(s)
Achondroplasia , Caregivers , Achondroplasia/genetics , Activities of Daily Living , Adolescent , Child , Family , Humans , Quality of Life
4.
J Health Care Poor Underserved ; 32(4): 2125-2142, 2021.
Article in English | MEDLINE | ID: mdl-34803063

ABSTRACT

Research summary. Extreme risk protection orders (ERPOs) allow police, family, and household members to file an order to temporarily remove firearms or prevent purchasing among individuals at high risk for harming themselves or others. Using inductive qualitative content analysis, we examined 241 ERPOs filed December 8, 2016 through May 10, 2019 in Washington State. Focusing on recurring themes, we explored the circumstances and behaviors that led to an ERPO filing. Extreme risk protection orders were filed over concerns for domestic violence, mass shooting threats, direct threats to oneself or others, and other concerning behavior with a firearm. Factors at all levels of the social-ecological model were found to play a role in the dangerous behaviors of respondents that led to an ERPO petition. Policy implications. Extreme risk protection orders can serve an important role in both protecting people and facilitating the provision of care for substance use, mental illness, and assistance to vulnerable individuals.


Subject(s)
Domestic Violence , Firearms , Gun Violence , Humans , Policy , Washington
5.
Inj Prev ; 27(1): 87-92, 2021 02.
Article in English | MEDLINE | ID: mdl-32943492

ABSTRACT

To better understand motivations behind purchase and storage of firearms during the COVID-19 pandemic, we used Amazon Mechanical Turk to conduct an online survey of individuals who did and did not purchase a firearm since 1 January 2020 in response to COVID-19. The survey was fielded between 1 and 5 May 2020. We asked about motivations for purchase, changes in storage practices and concern for themselves or others due to COVID-19. There were 1105 survey respondents. Most people who purchased a firearm did so to protect themselves from people. Among respondents who had purchased a firearm in response to COVID-19 without prior household firearm ownership, 39.7% reported at least one firearm was stored unlocked. Public health efforts to improve firearm-related safety during COVID-19 should consider increasing access to training and framing messages around the concerns motivating new firearm purchase.


Subject(s)
COVID-19/epidemiology , Consumer Behavior/statistics & numerical data , Firearms/statistics & numerical data , Adolescent , Adult , Aged , COVID-19/psychology , Equipment Safety/statistics & numerical data , Female , Household Products/statistics & numerical data , Humans , Male , Middle Aged , Motivation , Ownership/statistics & numerical data , Pandemics , SARS-CoV-2 , Safety , Surveys and Questionnaires , Young Adult
7.
Ann Intern Med ; 173(5): 342-349, 2020 09 01.
Article in English | MEDLINE | ID: mdl-32598226

ABSTRACT

BACKGROUND: In the United States, 74% of homicides and 51% of suicides involve firearms. Using extreme risk protection order (ERPO) laws, petitioners can request restricting firearm access for individuals (known as "respondents") who pose a risk to themselves or others. OBJECTIVE: To characterize respondents and circumstances of ERPOs. DESIGN: Descriptive study. SETTING: State of Washington. PARTICIPANTS: All ERPO respondents during 8 December 2016 to 10 May 2019. MEASUREMENTS: Reason for filing the ERPO; characteristics of respondents; respondent's reported history of domestic violence perpetration, mental illness, substance misuse, and suicide ideation or attempt; number and type of firearms removed; and ERPO petition outcome (granted or not granted). RESULTS: The ERPOs were filed for concerns about harm to self (n = 67), harm to others (n = 86), or harm to both self and others (n = 84). Of all ERPOs, 87% were filed by law enforcement and 81% were granted. At least 1 firearm was removed from 64% of respondents, with a total of 641 firearms removed. The petitioner reported prior domestic violence perpetration by the respondent in 24% of cases, and a prior diagnosis of a mental health condition and substance misuse for the respondent in 40% and 47% of cases, respectively. Of all respondents, 62% had a history of suicidal ideation or attempt according to the petitioner. As part of the ERPO process, the court ordered mental health evaluation in 30% of cases. LIMITATION: Filing of the forms was inconsistent. CONCLUSION: Laws regarding ERPOs are a potential tool to help protect patients or family members from harming themselves or others by restricting firearm possession and purchase. Further studies are needed to determine the long-term effects of these laws and identify approaches to increase their use. PRIMARY FUNDING SOURCE: State of Washington.


Subject(s)
Firearms/legislation & jurisprudence , Gun Violence/prevention & control , Adolescent , Adult , Aged , Aged, 80 and over , Female , Gun Violence/legislation & jurisprudence , Gun Violence/psychology , Humans , Male , Middle Aged , Risk Assessment , Suicide/psychology , Washington , Young Adult , Suicide Prevention
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