Clinical effectiveness of the psychological therapy Mental Health Intervention for Children with Epilepsy in addition to usual care compared with assessment-enhanced usual care alone: a multicentre, randomised controlled clinical trial in the UK.

BACKGROUND: Mental health difficulties are common in children and young people with chronic health conditions, but many of those in need do not access evidence-based psychological treatments. The study aim was to evaluate the clinical effectiveness of integrated mental health treatment for children and young people with epilepsy, a common chronic health condition known to be associated with a particularly high rate of co-occurring mental health difficulties. METHODS: We conducted a parallel group, multicentre, open-label, randomised controlled trial of participants aged 3-18 years, attending epilepsy clinics across England and Northern Ireland who met diagnostic criteria for a common mental health disorder. Participants were randomised (1:1; using an independent web-based system) to receive the Mental Health Intervention for Children with Epilepsy (MICE) in addition to usual care, or assessment-enhanced usual care alone (control). Children and young people in both groups received a full diagnostic mental health assessment. MICE was a modular psychological intervention designed to treat common mental health conditions in children and young people using evidence-based approaches such as cognitive behaviour therapy and behavioural parenting strategies. Usual care for mental health disorders varied by site but typically included referral to appropriate services. Participants, along with their caregivers, and clinicians were not masked to treatment allocation but statisticians were masked until the point of analysis. The primary outcome, analysed by modified intention-to-treat, was the parent-report Strengths and Difficulties Questionnaire (SDQ) at 6 months post-randomisation. The study is complete and registered with ISRCTN (57823197). FINDINGS: 1401 young people were potentially deemed eligible for study inclusion. Following the exclusion of 531 young people, 870 participants were assessed for eligibility and completed the SDQ, and 480 caregivers provided consent for study inclusion between May 20, 2019, and Jan 31, 2022. Between Aug 28, 2019, and Feb 21, 2022, 334 participants (mean ages 10·5 years [SD 3·6] in the MICE group vs 10·3 [4·0] in control group at baseline) were randomly assigned to an intervention using minimisation balanced by age, primary mental health disorder, diagnosis of intellectual disability, and autistic spectrum disorder at baseline. 168 (50%) of the participants were female and 166 (50%) were male. 166 participants were randomly assigned to the MICE group and 168 were randomly assigned to the control group. At 6 months, the mean SDQ difficulties for the 148 participants in the MICE group was 17·6 (SD 6·3) and 19·6 (6·1) for the 148 participants in the control group. The adjusted effect of MICE was -1·7 (95% CI -2·8 to -0·5; p=0·0040; Cohen's d, 0·3). 14 (8%) patients in the MICE group experienced at least one serious adverse event compared with 24 (14%) in the control group. 68% percent of serious adverse events (50 events) were admission due to seizures. INTERPRETATION: MICE was superior to assessment-enhanced usual care in improving symptoms of emotional and behavioural difficulties in young people with epilepsy and common mental health disorders. The trial therefore shows that mental health comorbidities can be effectively and safely treated by a variety of clinicians, utilising an integrated intervention across ages and in the context of intellectual disability and autism. The evidence from this trial suggests that such a model should be fully embedded in epilepsy services and serves as a model for other chronic health conditions in young people. FUNDING: UK National Institute for Health Research Programme Grants for Applied Research programme and Epilepsy Research UK Endeavour Project Grant.

Study protocol for a multisite randomized controlled trial of a peer navigator intervention for emergency department patients with nonfatal opioid overdose.

BACKGROUND: Patients presenting to emergency departments (EDs) after a nonfatal opioid-involved overdose are at high risk for future overdose and death. Responding to this risk, the New York City (NYC) Department of Health and Mental Hygiene operates the Relay initiative, which dispatches trained peer "Wellness Advocates" to meet patients in the ED after a suspected opioid-involved overdose and follow them for up to 90 days to provide support, education, referrals to treatment, and other resources using a harm reduction framework. METHODS: In this article, we describe the protocol for a multisite randomized controlled trial of Relay. Study participants are recruited from four NYC EDs and are randomized to receive the Relay intervention or site-directed care (the control arm). Outcomes are assessed through survey questionnaires conducted at 1-, 3-, and 6-months after the baseline visit, as well as through administrative health data. The primary outcome is the number of opioid-related adverse events, including any opioid-involved overdose or any other substance use-related ED visit, in the 12 months post-baseline. Secondary and exploratory outcomes will also be analyzed, as well as hypothesized mediators and moderators of Relay program effectiveness. CONCLUSION: We present the protocol for a multisite randomized controlled trial of a peer-delivered OD prevention intervention in EDs. We describe how the study was designed to minimize disruption to routine ED operations, and how the study was implemented and adapted during the COVID-19 pandemic. This trial is registered with ClinicalTrials.gov [NCT04317053].

Implementation of buprenorphine services in NYC syringe services programs: a qualitative process evaluation.

BACKGROUND: Syringe services programs (SSPs) hold promise for providing buprenorphine treatment access to people with opioid use disorder (OUD) who are reluctant to seek care elsewhere. In 2017, the New York City Department of Health and Mental Hygiene (DOHMH) provided funding and technical assistance to nine SSPs to develop "low-threshold" buprenorphine services as part of a multipronged initiative to lower opioid-related overdose rates. The aim of this study was to identify barriers to and facilitators of implementing SSP-based buprenorphine services. METHODS: We conducted 26 semi-structured qualitative interviews from April 2019 to November 2019 at eight SSPs in NYC that received funding and technical assistance from DOHMH. Interviews were conducted with three categories of staff: leadership (i.e., buprenorphine program management or leadership, eight interviews), staff (i.e., buprenorphine coordinators or other staff, eleven interviews), and buprenorphine providers (six interviews). We identified themes related to barriers and facilitators to program implementation using thematic analysis. We make recommendations for implementation based on our findings. RESULTS: Programs differed in their stage of development, location of services provided, and provider type, availability, and practices. Barriers to providing buprenorphine services at SSPs included gaps in staff knowledge and comfort communicating with participants about buprenorphine, difficulty hiring buprenorphine providers, managing tension between harm reduction and traditional OUD treatment philosophies, and financial constraints. Challenges also arose from serving a population with unmet psychosocial needs. Implementation facilitators included technical assistance from DOHMH, designated buprenorphine coordinators, offering other supportive services to participants, and telehealth to bridge gaps in provider availability. Key recommendations include: (1) health departments should provide support for SSPs in training staff, building health service infrastructure and developing policies and procedures, (2) SSPs should designate a buprenorphine coordinator and ensure regular training on buprenorphine for frontline staff, and (3) buprenorphine providers should be selected or supported to use a harm reduction approach to buprenorphine treatment. CONCLUSIONS: Despite encountering challenges, SSPs implemented buprenorphine services outside of conventional OUD treatment settings. Our findings have implications for health departments, SSPs, and other community organizations implementing buprenorphine services. Expansion of low-threshold buprenorphine services is a promising strategy to address the opioid overdose epidemic.

Costs of opioid overdose education and naloxone distribution in New York City.

Background: Naloxone is an opioid antagonist medication that can be administered by lay people or medical professionals to reverse opioid overdoses and reduce overdose mortality. Cost was identified as a potential barrier to providing expanded overdose education and naloxone distribution (OEND) in New York City (NYC) in 2017. We estimated the cost of delivering OEND for different types of opioid overdose prevention programs (OOPPs) in NYC. Methods: We interviewed naloxone coordinators at 11 syringe service programs (SSPs) and 10 purposively sampled non-SSPs in NYC from December 2017 to September 2019. The samples included diverse non-SSP program types, program sizes, and OEND funding sources. We calculated one-time start up costs and ongoing operating costs using micro-costing methods to estimate the cost of personnel time and materials for OEND activities from the program perspective, but excluding naloxone kit costs. Results: Implementing an OEND program required a one-time median startup cost of $874 for SSPs and $2,548 for other programs excluding overhead, with 80% of those costs attributed to time and travel for training staff. SSPs spent a median of $90 per staff member trained and non-SSPs spent $150 per staff member. The median monthly cost of OEND program activities excluding overhead was $1,579 for SSPs and $2,529 for non-SSPs. The costs for non-SSPs varied by size, with larger, multi-site programs having higher median costs compared to single-site programs. The estimated median cost per kit dispensed excluding and including overhead was $19 versus $25 per kit for SSPs, and $36 versus $43 per kit for non-SSPs, respectively. Conclusions: OEND operating costs vary by program type and number of sites. Funders should consider that providing free naloxone to OEND programs does not cover full operating costs. Further exploration of cost-effectiveness and program efficiency should be considered across different types of OEND settings.

The Intentional Self-Medication of 9/11-Related PTSD Symptoms with Alcohol: 15 Years after the Disaster.

The self-medication hypothesis may explain the co-morbidity of affective and substance use disorders. Research shows increased prevalence, frequency, and intensity of binge drinking and post-traumatic stress disorder (PTSD) among those directly exposed to the 9/11 terrorist attacks on the World Trade Center (WTC), however, little is known about PTSD symptomology and intentional self-medication with alcohol (ISMA) among this group. We used WTC Health Registry data (N = 28,935) to describe the relationship between ISMA and specific symptom clusters of probable 9/11-related PTSD, the number of PTSD symptom clusters endorsed, and binge drinking intensity. Multivariable logistic regression models were used to estimate the adjusted odds ratios (AORs) and 95% confidence intervals (CI). ISMA was most strongly associated with the hyperarousal PTSD symptom cluster (AOR = 2.04 [1.88, 2.21]) and the endorsement of one (AOR = 1.80 CI [1.65, 1.95]), two (AOR = 2.51 CI [2.28, 2.77]), or three (AOR = 2.84 CI [2.55, 3.17]) PTSD symptom clusters, indicating a clear dose-response relationship. A significant number of 9/11-exposed persons continue to experience PTSD symptoms and engage in ISMA as a potential coping mechanism. Repeated screenings for self-medicative alcohol use among survivors of mass traumas with PTSD symptoms is of public health importance.

Optimising Evidence-Based Psychological Treatment for the Mental Health Needs of Children with Epilepsy: Principles and Methods.

There are potent evidence-based psychological treatments for youth with mental health needs, yet they are rarely implemented in clinical practice, especially for youth with mental health disorders in the context of chronic physical illness such as epilepsy. Implementation science, the study of the translation of research into practice, can promote the uptake of existing effective interventions in routine clinical practice and aid the sustainable integration of psychological treatments with routine health care. The aim of this report was to use four implementation science methods to develop a version of an existing effective psychological treatment for mental health disorders [the Modular Approach to Treatment of Children with Anxiety, Depression or Conduct Problems (MATCH-ADTC)] for use within paediatric epilepsy services: (a) literature search; (b) iterative focus groups underpinned by normalisation process theory; (c) Plan-Do-Study-Act methods; and (d) qualitative patient interviews. Findings: Three modifications were deemed necessary to facilitate implementation in children with both mental health disorders and epilepsy. These were (a) a universal brief psychoeducational component addressing the relationship between epilepsy and mental health; (b) supplementary, conditionally activated interventions addressing stigma, parental mental health and the transition to adulthood; and (c) additional training and supervision. The intervention needed relatively little alteration for implementation in paediatric epilepsy services. The modified treatment reflected the scientific literature and the views of clinicians and service users. The multi-method approach used in this report can serve as a model for implementation of evidence-based psychological treatments for children with mental health needs in the context of other chronic illnesses.

Relay: A Peer-Delivered Emergency Department-Based Response to Nonfatal Opioid Overdose.

Relay, a peer-delivered response to nonfatal opioid overdoses, provides overdose prevention education, naloxone, support, and linkage to care to opioid overdose survivors for 90 days after an overdose event. From June 2017 to December 2018, Relay operated in seven New York City emergency departments and enrolled 649 of the 876 eligible individuals seen (74%). Preliminary data show high engagement, primarily among individuals not touched by harm reduction or naloxone distribution networks. Relay is a novel and replicable response to the opioid epidemic.

Alcohol and Drug-Related Mortality Among Enrollees in the World Trade Center Health Registry (WTCHR), 2004 to 2012.

OBJECTIVE: Have World Trade Center Health Registry (WTCHR) enrollees experienced increased alcohol and drug-related mortality associated with exposures to the events of 9/11/01? METHODS: Cases involving death due to alcohol or drugs between 2003 and 2012 in New York City (NYC) were obtained through a match of the Registry with NYC Vital Records. We compared ICD-10-coded deaths where alcohol and/or drug use was the underlying cause of death to deaths from all other causes. RESULTS: Of 1193 deaths, 66 (5.5%) were alcohol/drug-related. Adjusted odds ratios for dying from alcohol/drug-related causes were significantly elevated for enrollees who were male, age 18 to 44 years, smoked at enrollment, had 9/11-related probable posttraumatic stress disorder, were rescue/recovery workers, or sustained an injury on 9/11/01. CONCLUSION: Following a major disaster, alcohol and drug-related mortality may be increased.

Post-9/11 drug- and alcohol- related hospitalizations among World Trade Center Health Registry enrollees, 2003-2010.

OBJECTIVE: To describe patterns of drug- and alcohol-related hospitalizations among persons exposed to the 2001 World Trade Center (WTC) terrorist attacks and to assess whether 9/11-related exposures or post-9/11 post-traumatic stress disorder (PTSD) were associated with increased odds of hospitalization. METHODS: Data for adult enrollees in the WTC Health Registry, a prospective cohort study, were linked to New York State (NYS) administrative hospitalization data to identify alcohol- and drug-related hospitalizations from enrollment to December 31, 2010. Logistic regression was used to analyze the associations between substance use-related hospitalization, 9/11-related exposure and PTSD. RESULTS: Of 41,176 NYS resident enrollees, we identified 626 (1.5%) who had at least one alcohol- or drug-related hospitalization; 53.4% (n = 591) of these hospitalizations were for alcohol only diagnoses and 46.6% (n = 515) were drug-related. Witnessing ≥3 traumatic events on 9/11 was significantly associated with having a drug-related hospitalization (AOR 1.4, 95% CI = [1.1, 1.9]). PTSD was significantly associated with both having a drug-related hospitalization as well as an alcohol only-related hospitalization. (AOR 2.6, 95% CI = [2.0, 3.3], AOR 1.8, 95% CI = [1.4, 2.3], respectively). CONCLUSIONS: Witnessing traumatic events and having PTSD were independently associated with substance use-related hospitalizations. Targeting people who witnessed traumatic events on 9/11 and/or who have PTSD for substance use- treatment could reduce alcohol and drug-related hospitalizations connected to 9/11.

Usual care for mental health problems in children with epilepsy: A cohort study.

Background: Epilepsy is one of the most common chronic paediatric conditions. Children and young people with epilepsy are at a significantly higher risk of developing mental health problems relative to the general population, yet the majority of these problems are unrecognised and under-treated in clinical practice. Although there is little epilepsy-specific guidance as to what interventions to use, researchers suggest there is no reason why clinicians should not be using the evidence base. Given the poor prognosis of untreated mental health difficulties, this cohort study sought to identify what psychological treatment young people with epilepsy with mental health needs receive in routine practice. Methods: Participants were children and young people aged 3 to 18 attending paediatric neurology clinics. The parents of those children who met threshold for impairing symptoms on the Strengths and Difficulties questionnaire were asked to complete the Development and Well-being Assessment (DAWBA), an online clinical assessment designed to generate psychiatric diagnoses. Participants who met clinical threshold for a disorder according to the DAWBA were provided with a bespoke measure asking questions regarding their experience with treatment for mental health support. Results: 16 of the 46 parents who completed the DAWBA reported that they had experienced previous or current support for their child's mental health difficulties. The mental health support offered to families was highly variable, inadequate and often not clearly compliant with existing UK National Institute for Health and Clinical Excellence (NICE) guidelines for mental health treatment in children and young people. Conclusions: The present study demonstrates the inconsistency and inadequacy of mental health provision for children and young people with epilepsy. Future work should explore reasons for the treatments offered failing to adhere to existing guidance for mental health difficulties in children, as well as possible solutions to this.

Intensity of Binge Drinking a Decade After the September 11th Terror Attacks Among Exposed Individuals.

INTRODUCTION: The 9/11 terrorist attacks on the World Trade Center resulted in elevated post-traumatic stress disorder (PTSD) and alcohol use among exposed individuals. The relationship among traumatic exposure, PTSD, and excessive drinking is well documented; however, little is known about these relationships in the long term. This study examines factors increasing binge drinking risk among exposed individuals a decade post-9/11. METHODS: In 2015-2016, data were analyzed from 28,592 World Trade Center Health Registry enrollees aged ≥18 years who completed the Wave 3 (2011-2012) survey. Women comprised 38.9% of participants. Binge drinking in the last 30 days was categorized as low (men, five to seven drinks; women, four to six drinks) or high intensity (men, eight or more drinks; women, seven or more drinks). Probable 9/11-related PTSD was defined as scoring ≥44 on the PTSD Checklist. Exposures to 9/11 (e.g., witnessing horror, sustaining an injury) were categorized as none/low (zero to two) or high (three or more). RESULTS: Binge drinking was reported by 24.7% of participants, of whom 36.9% reported high-intensity binge drinking. Compared with non-binge drinkers, the odds of low- and high-intensity binge drinking were greater among enrollees who were male, aged 18-34 years, non-Hispanic white, had income >$75,000, were rescue/recovery workers, had high 9/11 exposure, or 9/11-related PTSD. CONCLUSIONS: The observed associations among traumatic exposure, PTSD, and excessive drinking underscore the need for improved therapies addressing excessive drinking and PTSD concurrently, inclusion of repeated post-event screening for excessive drinking, and evidence-based population-level interventions to reduce alcohol consumption.

Trajectories of PTSD Among Lower Manhattan Residents and Area Workers Following the 2001 World Trade Center Disaster, 2003-2012.

Group-based trajectory modeling was used to explore empirical trajectories of symptoms of posttraumatic stress disorder (PTSD) among 17,062 adult area residents/workers (nonrescue/recovery workers) enrolled in the World Trade Center (WTC) Health Registry using 3 administrations of the PTSD Checklist (PCL) over 9 years of observation. Six trajectories described PTSD over time: low-stable (48.9%), moderate-stable (28.3%), moderate-increasing (8.2%), high-stable (6.0%), high-decreasing (6.6 %), and very high-stable (2.0%). To examine factors associated with improving or worsening PTSD symptoms, groups with similar intercepts, but different trajectories were compared using bivariate analyses and logistic regression. The adjusted odds of being in the moderate-increasing relative to the moderate-stable group were significantly greater among enrollees reporting low social integration (OR = 2.18), WTC exposures (range = 1.34 to 1.53), job loss related to the September 11, 2001 disaster (OR = 1.41), or unmet mental health need/treatment (OR = 4.37). The odds of being in the high-stable relative to the high-decreasing group were significantly greater among enrollees reporting low social integration (OR = 2.23), WTC exposures (range = 1.39 to 1.45), or unmet mental health need/treatment (OR = 3.42). The influence of severe exposures, scarce personal/financial resources, and treatment barriers on PTSD trajectories suggest a need for early and ongoing PTSD screening postdisaster.

Trajectories of Scores on a Screening Instrument for PTSD Among World Trade Center Rescue, Recovery, and Clean-Up Workers.

The longitudinal course of posttraumatic stress disorder (PTSD) over 8-9 years was examined among 16,488 rescue and recovery workers who responded to the events of September 11, 2001 (9/11) at the World Trade Center (WTC; New York, NY), and were enrolled in the World Trade Center Health Registry. Latent class growth analysis identified 5 groups of rescue and recovery workers with similar score trajectories at 3 administrations of the PTSD Checklist (PCL): low-stable (53.3%), moderate- stable (28.7%), moderate-increasing (6.4%), high-decreasing (7.7%), and high-stable (4.0%). Relative to the low-stable group, membership in higher risk groups was associated with 9/11-related exposures including duration of WTC work, with adjusted odds ratios ranging from 1.3 to 2.0, witnessing of horrific events (range = 1.3 to 2.1), being injured (range = 1.4 to 2.3), perceiving threat to life or safety (range = 2.2 to 5.2), bereavement (range = 1.6 to 4.8), and job loss due to 9/11 (range = 2.4 to 15.8). Within groups, higher PCL scores were associated with adverse social circumstances including lower social support, with B coefficients ranging from 0.2 to 0.6, divorce, separation, or widowhood (range = 0.4-0.7), and unemployment (range = 0.4-0.5). Given baseline, exposure-related, and contextual influences that affect divergent PTSD trajectories, screening for both PTSD and adverse circumstances should occur immediately, and at regular intervals postdisaster.

Cigarette smoking and 9/11-related posttraumatic stress disorder among World Trade Center Health Registry enrollees, 2003-12.

OBJECTIVE: Numerous studies have observed higher rates of smoking among adults with mental health conditions. We examined posttraumatic stress disorder (PTSD) and smoking over a 7-9year period among adults with firsthand exposure to the 9/11 attacks enrolled in the World Trade Center Health Registry. METHOD: Data were collected at three waves: W1 (2003-04), W2 (2006-07), and W3 (2011-12). Enrollees aged ≥25 at W1 and who completed all three waves (n=34,458) were categorized by smoker-type: non-smoker, non-daily (smoked some days in last 30days), light (1-10 cigarettes per day (CPD)), or heavy (11+ CPD). Enrollees who smoked at W1 but not W3 were considered to have quit. PTSD was defined as a score of ≥44 on the PTSD Checklist-Civilian Version. RESULTS: Smoking declined significantly from W1 (12.6%) to W3 (9.2%). Smoking prevalence was higher among enrollees with PTSD. In multivariable models, odds of quitting were 25-39% lower among heavy, light, and non-daily smokers with PTSD compared to those without. CONCLUSION: PTSD was associated with reduced odds of quitting regardless of smoker-type. Disaster-exposed smokers with PTSD are likely in need of more supportive services in order to abstain from smoking.

Nonfatal injuries 1 week after hurricane sandy--New York city metropolitan area, October 2012.

On October 29, 2012, Hurricane Sandy (Sandy) made landfall in densely populated areas of New York, New Jersey, and Connecticut. Flooding affected 51 square miles (132 square kilometers) of New York City (NYC) and resulted in 43 deaths, many caused by drowning in the home, along with numerous storm-related injuries. Thousands of those affected were survivors of the World Trade Center (WTC) disaster of September 11, 2001 (9/11) who had previously enrolled in the WTC Health Registry (Registry) cohort study. To assess Sandy-related injuries and associated risk factors among those who lived in Hurricane Sandy-flooded areas and elsewhere, the NYC Department of Health and Mental Hygiene surveyed 8,870 WTC survivors, who had provided physical and mental health updates 8 to 16 months before Sandy. Approximately 10% of the respondents in flooded areas reported injuries in the first week after Sandy; nearly 75% of those had more than one injury. Injuries occurred during evacuation and clean-up/repair of damaged or destroyed homes. Hurricane preparation and precautionary messages emphasizing potential for injury hazards during both evacuation and clean-up or repair of damaged residences might help mitigate the occurrence and severity of injury after a hurricane.

Frequent binge drinking five to six years after exposure to 9/11: findings from the World Trade Center Health Registry.

BACKGROUND: Exposure to 9/11 may have considerable long-term impact on health behaviors, including increased alcohol consumption. We examined the association between frequent binge drinking, posttraumatic stress disorder (PTSD), and number of 9/11-specific experiences among World Trade Center Health Registry (Registry) enrollees five-to-six years after 9/11. METHODS: Participants included 41,284 lower Manhattan residents, workers, passers-by, and rescue/recovery workers aged 18 or older without a pre-9/11 PTSD diagnosis who completed Wave 1 (2003-2004) and Wave 2 (2006-2007) interviews. Frequent binge drinking was defined as consuming five or more drinks on five or more occasions in the prior 30 days at Wave 2. Probable PTSD was defined as scoring 44 or greater on the PTSD Checklist. 9/11 exposure was measured as the sum of 12 experiences and grouped as none/low (0-1), medium (2-3), high (4-5) and very high (6+). RESULTS: Frequent binge drinking was significantly associated with increasing 9/11 exposure and PTSD. Those with very high and high exposures had a higher prevalence of frequent binge drinking (13.7% and 9.8%, respectively) than those with medium and low exposures (7.5% and 4.4%, respectively). Upon stratification, very high and high exposures were associated with frequent binge drinking in both the PTSD and no PTSD subgroups. CONCLUSIONS: Our findings suggest that 9/11 exposure had an impact on frequent binge drinking five-to-six years later among Registry enrollees. Understanding the effects of traumatic exposure on alcohol use is important to identify risk factors for post-disaster alcohol misuse, inform policy, and improve post-disaster psychological and alcohol screening and counseling.

Translating research into action: An evaluation of the World Trade Center Health Registry's Treatment Referral Program.

This manuscript describes the design, implementation and evaluation of the World Trade Center (WTC) Health Registry's Treatment Referral Program (TRP), created to respond to enrollees' self-reported 9/11-related physical and mental health needs and promote the use of WTC-specific health care. In 2009-2011, the TRP conducted personalized outreach, including an individualized educational mailing and telephone follow-up to 7,518 selected enrollees who resided in New York City, did not participate in rescue/recovery work, and reported symptoms of 9/11-related physical conditions or posttraumatic stress disorder (PTSD) on their most recently completed Registry survey. TRP staff spoke with enrollees to address barriers to care and schedule appointments at the WTC Environmental Health Center for those eligible. We assessed three nested outcomes: TRP participation (e.g., contact with TRP staff), scheduling appointments, and keeping scheduled appointments. A total of 1,232 (16.4%) eligible enrollees participated in the TRP; 32% of them scheduled a first-time appointment. We reached 84% of participants who scheduled appointments; 79.4% reported having kept the appointment. Scheduling an appointment, but not keeping it, was associated with self-reported unmet health care need, PTSD, and poor functioning (≥14 days of poor physical or mental health in the past 30 days) (P < 0.05). Neither scheduling nor keeping an appointment was associated with demographic characteristics. Successful outreach to disaster-exposed populations may require a sustained effort that employs a variety of methods in order to encourage and facilitate use of post-disaster services. Findings from this evaluation can inform outreach to the population exposed to 9/11 being conducted by other organizations.

A qualitative examination of health and health care utilization after the September 11th terror attacks among World Trade Center Health Registry enrollees.

BACKGROUND: Many individuals who have 9/11-related physical and mental health symptoms do not use or are unaware of 9/11-related health care services despite extensive education and outreach efforts by the World Trade Center (WTC) Health Registry (the Registry) and various other organizations. This study sought to evaluate Registry enrollees' perceptions of the relationship between physical and mental health outcomes and 9/11, as well as utilization of and barriers to 9/11-related health care services. METHODS: Six focus groups were conducted in January 2010 with diverse subgroups of enrollees, who were likely eligible for 9/11-related treatment services. The 48 participants were of differing race/ethnicities, ages, and boroughs of residence. Qualitative analysis of focus group transcripts was conducted using open coding and the identification of recurring themes. RESULTS: Participants described a variety of physical and mental symptoms and conditions, yet their knowledge and utilization of 9/11 health care services were low. Participants highlighted numerous barriers to accessing 9/11 services, including programmatic barriers (lack of program visibility and accessibility), personal barriers such as stigmatization and unfamiliarity with 9/11-related health problems and services, and a lack of referrals from their primary care providers. Moreover, many participants were reluctant to connect their symptoms to the events of 9/11 due to lack of knowledge, the amount of time that had elapsed since 9/11, and the attribution of current health symptoms to the aging process. CONCLUSIONS: Knowledge of the barriers to 9/11-related health care has led to improvements in the Registry's ability to refer eligible enrollees to appropriate treatment programs. These findings highlight areas for consideration in the implementation of the new federal WTC Health Program, now funded under the James Zadroga 9/11 Health and Compensation Act (PL 111-347), which includes provisions for outreach and education.

Comparison of health outcomes among affiliated and lay disaster volunteers enrolled in the World Trade Center Health Registry.

BACKGROUND: Volunteers (non-professional rescue/recovery workers) are universally present at man-made and natural disasters and share experiences and exposures with victims. Little is known of their disaster-related health outcomes. METHODS: We studied 4974 adult volunteers who completed the World Trade Center Health Registry 2006-07 survey to examine associations between volunteer type (affiliated vs. lay) and probable posttraumatic stress disorder (PTSD); new or worsening respiratory symptoms; post-9/11 first diagnosis of anxiety disorder, depression, and/or PTSD; and asthma or reactive airway dysfunction syndrome (RADS). Affiliated volunteers reported membership in a recognized organization. Lay volunteers reported no organizational affiliation and occupations unrelated to rescue/recovery work. Adjusted odds ratios (OR(adj)) were calculated using multinomial regression. RESULTS: Lay volunteers were more likely than affiliated volunteers to have been present in lower Manhattan, experience the dust cloud, horrific events and injury on 9/11 and subsequently to report unmet healthcare needs. They had greater odds of early post-9/11 mental health diagnosis (OR(adj) 1.6; 95% CI: 1.4-2.0) and asthma/RADS (1.8; 1.2-2.7), chronic PTSD (2.2; 1.7-2.8), late-onset PTSD (1.9; 1.5-2.5), and new or worsening lower respiratory symptoms (2.0; 1.8-2.4). CONCLUSIONS: Lay volunteers' poorer health outcomes reflect earlier, more intense exposure to and lack of protection from physical and psychological hazards. There is a need to limit volunteers' exposures during and after disasters, as well as to provide timely screening and health care post-disaster.

From bench to clinic: accessing promising investigational medications for patients with HIV infection in an urban family health center.

BACKGROUND: Patients who experience failure of treatment for human immunodeficiency virus and who have no other treatment options can sometimes obtain promising investigational medications through expanded access programs. However, psychosocial and socioeconomic factors, common among underserved populations, create barriers to enrollment at referral centers. To increase access for unstable patients, an urban family health center developed the capacity to provide investigational medications directly to patients. This article describes that process and the treatment outcomes. METHODS: The necessary steps to implement the program were outlined and accomplished. Patient outcomes were analyzed and the project's value to the organization and its clients was evaluated. RESULTS: Twenty-five patients received one or more investigational antiretroviral medications. Within 24 weeks of enrollment, the majority of patients achieved undetectable viral levels (80% achieved <400 copies/mL and 64% achieved <50 copies/mL), with a median decrease of 49,173 copies/mL (P = .0002) and a median increase in CD4 lymphocyte count of 95 cells/mm(3) (P < .0001). CONCLUSION: Community health centers can mitigate barriers to access and meet the needs of unstable patients who have no therapeutic options by incorporating access to promising investigational treatments into primary care. The use of centralized institutional review boards can increase efficiency of the review process, but provisions to address local cultural and social issues should be included.