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

The September 11, 2001 (9/11) terrorist attacks on the World Trade Center (WTC) killed thousands and exposed hundreds of thousands to horrific events and potentially harmful environmental conditions. The WTC Health Registry (the Registry) is a cohort study which tracks the physical and mental health of over 71,000 enrollees exposed to the WTC disaster [1]. The Registry and others have documented a substantial burden of physical and mental health outcomes related to 9/11 including immediate injuries, as well as subsequent psychological outcomes including stress, anxiety, posttraumatic stress disorder (PTSD), and depression, and physical outcomes such as asthma, other respiratory problems, and gastroesophageal reflux symptoms [1‐8]. Nearly two-thirds of adult Registry enrollees reported new or worsening respiratory symptoms two to three years after 9/11 [6]. Five to six years after 9/11, new post-disaster asthma incidence was 10.2% and nearly one-fourth (23.8%) of enrollees without a diagnosis of PTSD prior to 9/11 screened positive for symptoms of probable PTSD [1].

Despite increases in psychological and physical symptoms, there was a decline in inpatient, outpatient, emergency department, and mental health care utilization in New York City (NYC) in the weeks following 9/11 compared to utilization in the month prior to 9/11 [9] or to expected utilization [10]. Many survivors encountered barriers to mental health treatment, including stigma associated with mental illness, lack of knowledge about services, inadequate finances or time, beliefs that others are in greater need of services or that individuals can care for themselves, mistrust of mental health professionals, and fear of discussing the attacks [5, 11]. After the 9/11 disaster, numerous programs that provided physical and mental health services were available to different groups during different time periods [12].

In 2009, the Registry developed a Treatment Referral Program (TRP) in collaboration with the NYC Health and Hospital Corporation’s (HHC) WTC Environmental Health Center (EHC), which has provided specialized services to 9/11 survivors (individuals who resided, worked, or were present in lower Manhattan on 9/11) since 2005. The 9/11 specialty programs see thousands of patients who were exposed to the disaster. As such, they are well equipped to recognize and accurately diagnose emerging conditions within this vulnerable population.

Services are provided for 9/11-related physical and mental conditions at no out-of-pocket cost [13]. Although insurance providers are billed for services, individuals who have public or commercial insurance are not held responsible for co-payments, deductibles, or services not covered by their insurance. Uninsured persons are covered in-full for services related to WTC conditions. In fiscal year 2009, of patients who received care at the EHC 50% were uninsured, 35% had some form of commercial insurance, and 7% had Medicaid for at least one point during the year [13]. Initial visits to the EHC may include: laboratory testing, radiology, pulmonary function testing, mental health screening, and complete physical examination as appropriate.

Despite widespread outreach efforts, including media campaigns, subway ads, and mass mailings by the EHC, the Registry, and a coalition of community-based organizations, only a small proportion of survivors have utilized services available at the EHC. For this reason, the TRP initiated personalized outreach to encourage enrollees and others with 9/11-related physical or mental health conditions to seek 9/11 specialty care at the EHC. Early interactions with enrollees revealed their limited knowledge of available 9/11 services and numerous barriers to care.

The literature on post-9/11 health care utilization is limited to broad based samples of NYC residents and does not focus on the use of WTC specialty care. As such, little is known about the use of 9/11-related specialty care among those directly exposed to the disaster. The purpose of this study is to learn more about enrollees’ perceptions of 9/11-related physical and mental health outcomes and health care services, as well as utilization of and barriers to 9/11-related health care services.

Six focus groups of between 8 and 12 participants each were held in January 2010 in NYC. Participants were recruited from enrollees in the Registry who were aged 18 years and older, were not professional rescue and recovery workers, and who resided in NYC at the time of the focus groups. We used stratified random sampling [14] in order that each group represented a particular subgroup of Registry enrollees who were eligible for care at the EHC: presumed active enrollees (PA), new adults (NA), lower Manhattan residents (LM), rescue and recovery volunteers (RR), Mandarin speakers (M), and Spanish speakers (S). Presumed active enrollees have had no confirmed contact with the Registry since their initial survey (2003–04) and did not complete the Registry’s second survey (2006–07). New adults are enrollees currently aged 18 to 25 years that were enrolled into the Registry by their parents as children. Rescue and recovery volunteers recruited for this study were presumed eligible for the EHC and ineligible for services at a program for responders based on their report of working less than 40 hours between 09/11/01 and 06/30/02 at any WTC site.

Participants were recruited by phone from randomized lists of enrollees potentially eligible for one of the groups. Potential participants were told that the purpose of the focus group was to develop more effective communication tools to inform individuals about 9/11 health care services. Participants received $100 as compensation for their time. The moderator’s guide was developed by two of the authors (AEW and AP) and an outside vendor with input from health care professionals at the Registry and the EHC. Table 1 displays topics and questions from the guide. Recruitment, moderation, translation, and transcription for the focus groups were performed by the vendor. The groups lasted approximately 90 to 120 minutes and were facilitated by a trained and highly experienced moderator. All six groups were recorded and professionally transcribed. Foreign language groups were simultaneously translated and transcribed in English. Except for the moderator, specific individuals were not personally identified in the transcripts and no demographic characteristics could be associated with individual comments. The quotes used to exemplify each theme are identified only by the transcript from which they were taken. The study was deemed market research and not human subjects research by the institutional review board of the NYC Department of Health and Mental Hygiene. To maintain confidentiality, the full identities of participants were not disclosed to researchers at the Registry.

This study helped to identify barriers to care as well as enrollees’ concerns about their current health symptoms, sources of 9/11 health care, and their ability to access services. Consistent with previous 9/11 research, participants reported a range of physical and mental health symptoms and disorders with varying severity and duration [1‐8]. Similar to what has been previously described in the literature on post-9/11 health care utilization, participants experienced barriers to care, including the stigma associated with mental illness, lack of knowledge about services, difficulty accessing services, conflicting personal obligations, individual belief that they did not have a problem, and fear of treatment [5, 11].

Participants described logistical barriers such as difficulty contacting programs, physical distance from program locations, and inconvenient program hours. Many individuals indicated that these obstacles may ultimately have prevented them from accessing needed services. As logistical barriers are often overlooked when analyzing reasons for lack of service utilization, we suggest that 9/11 programs consider methods to address these barriers in order to improve program access and utilization. Suggested changes include a simplified enrollment process and extended clinic hours that include evenings and weekends, as well as increased phone bank staffing during peak hours.

Several participants discussed their relationships with their current primary care providers, describing them as long-standing and important. Many stated that they value their providers’ clinical assessment and advice and were concerned or skeptical about receiving care from 9/11 program providers rather than their own physicians or a provider who would feel like a “stranger”. As previously mentioned, providers at the 9/11 programs are experts in their field and are eager to coordinate care with patients’ primary care providers. Similarly, the biomedical literature suggests that for specialist referrals to be successful, the process requires coordination between the patient, the primary care provider, and the specialist [18, 19]. Referrals are most effective when endorsed by an individual’s primary care provider and when the individual understands the reason for the referral [19]. Findings from a 2007 study by Forrest et al. showed that patients were most likely to attend an appointment with a specialist when they had a long-term relationship with the referring provider, they agreed with the need for the referral, and when they were motivated to keep the appointment [20]. Participants also reported that they did not seek 9/11-specialty care because their personal health care providers had dismissed the possibility of an association between their symptoms and 9/11.

This indicates an important area for further research, as primary providers may be a key element in the process of referring affected individuals to a 9/11 program. Insights gained from further investigation of health care providers’ knowledge about 9/11 health and health care services may suggest more effective targeted educational campaigns for primary providers. Therefore, it is our suggestion that agencies administering 9/11 health care programs consider medical providers in their plans for education and outreach, such as provider education, public health detailing, or continuing medical education events.

Many participants discussed the stigma of mental illness. As evidenced in the literature, in addition to the dual individual and interpersonal burden associated with mental illness, those who suffer from mental health problems are often subjected to prejudice, discrimination, rejection, and stigmatization [21]. In many circumstances, stigma may act as a major barrier to mental health service utilization and treatment compliance [22]. Moreover, participants exhibited feelings of fear associated with connecting their symptoms to their exposure. For some, learning that exposure to 9/11 has left them with a potentially chronic or life-threatening medical condition may evoke feelings of re-victimization. We suggest that front-line clinic and outreach staff receive training to enhance their ability to address patients’ concerns about receiving mental health care. The TRP has trained its staff in motivational interviewing techniques [23] to facilitate enrollee access to care and normalize enrollees’ beliefs about mental illness and treatment. As such, staff are better able to reinforce the acceptability and benefits of seeking care for a mental health condition. To date, the TRP has been successful in motivating over 600 enrollees to schedule their first appointment at the EHC, many of whom have mental health symptoms. An additional 400 enrollees that received the TRP’s educational materials scheduled their first appointment at the EHC without the assistance of a TRP staff member.

There are several potential explanations for participants’ reluctance to consider the possibility of an association between their current physical and mental health symptoms and the disaster, including avoidance and attribution to other causes. Although many of the currently reported conditions may be caused by other factors and are therefore unrelated to 9/11, it is appropriate for symptomatic 9/11 survivors to receive screenings for 9/11-related conditions to ensure that they are receiving accurate diagnoses and optimal health care. Many participants exhibited a lack of knowledge about medical conditions that may be related to 9/11, as well as difficulty discerning the differences between 9/11-related illnesses and conditions attributable to other causes. Several were concerned about “proving” to their current provider or to a 9/11 program that a symptom or condition was connected to their 9/11 exposure. Moreover, many participants were not aware that 9/11 services are still available. Those that were aware of services did not necessarily believe that specialty care for 9/11 conditions was superior to the care they were currently receiving. These findings highlight a need for better translation of research findings into educational materials that can be readily understood by affected general populations.

These focus groups served to inform the continuing work of the Registry’s Treatment Referral Program (TRP). Based on these findings, the Registry has placed additional emphasis on specialized training of staff to enhance motivational interviewing skills. This allows staff to better educate enrollees on the possible connection between their symptoms and the 9/11 disaster and minimize feelings of apprehension about the connection, address barriers to care, and ultimately provide optimal linkages to 9/11 specialty care. Moreover, to address the stigma surrounding mental health, staff members are trained to normalize enrollees’ feelings about their post-9/11 mental health symptoms and health care. Additionally, understanding the differences among subpopulations of enrollees enhances the Registry’s ability to customize its outreach activities for the TRP and other initiatives. The Registry partnered with the Environmental Health Center to send a letter and 9/11 pediatric clinical guidelines [24] to pediatricians in the NYC area to increase awareness of the potential impact of 9/11 on children, as well as pediatric services available at the EHC. The Registry is considering other methods to engage NYC primary care providers in the referral process, including in-depth interviews, continuing education, and additional mailings. The Registry will continue to provide referral services to all enrollees and conduct outreach based on updated health information received from the Registry’s third survey (2011–12).

Beyond its use in guiding the Registry’s TRP, the information gleaned from these focus groups highlights areas for consideration in the implementation of and outreach for the new federal WTC Health Program under the James Zadroga 9/11 Health and Compensation Act (PL 111-347) [25], which includes and expands upon the survivor and responder services already in place. These findings may also be relevant when planning and providing services in the wake of future disasters. Specifically, program administrators should consider simplifying the enrollment process, offering extended clinic hours, and improving the ease of contacting programs. Focus group discussions demonstrate that among persons directly exposed to the disaster, knowledge about 9/11 programs and eligibility, as well as 9/11-related health conditions was limited and replete with misinformation and confusion, signifying a need for enhanced education and outreach to both potential patients and providers. In addition to broad-based national and regional advertising campaigns, program administrators should consider outreach activities within affected communities. Moreover, these findings indicate the pivotal role that primary care providers can play in the detection of potentially 9/11-related conditions and ultimately make appropriate referrals for 9/11 specialty care. The engagement of primary care providers would likely enhance the understanding of the health impact of 9/11 among providers and their affected patients.