The unmet health care needs of people who inject drugs
In 2015, an estimated 27.1 million persons (10.1% of the population) in the United States had used illicit drugs within the last 30 days (Center for Behavioral Health Statistics and Quality, 2016). This increased use of illicit substances has resulted in a rising number of people who inject drugs (PWID). This population has higher rates of preventable conditions including HIV, hepatitis B virus (HBV), hepatitis C virus (HCV), endocarditis, sexually transmitted diseases (STDs), abscesses, and overdose (CDC, 2016). According to the CDC (2016), strategies and interventions aimed at persons who use drugs are imperative to decrease the spread of disease. Interventions include access to syringes, testing for infectious disease, vaccines, behavioral interventions to decrease the spread of transmittable diseases, risk reduction, and overdose prevention (CDC, 2016; WHO, 2014). Due to stigma, accessing health care services can be challenging for the PWID (McKnight et al., 2017).
Health care providers (HCPs) often have a preference to not work with individuals with a substance use disorder (Brener, Von Hippel, Kippax, & Preacher, 2010). Substance dependence is a chronic, relapsing brain disease (NIDA, 2014) that is highly stigmatized (Matthews, Dwyer, & Snoek, 2017). Drug use is particularly stigmatizing because it is perceived to be under the control of the person; therefore, the person is to blame for the outcomes of their drug use (Brener et al., 2010). In response to perceived marginalization from HCPs, PWID will often delay treatment until their situation becomes life-threatening or requires extensive treatment (McKnight et al., 2017). The leading cause of liver morbidity and mortality is chronic HCV, but this can be cured with antiviral treatment. Active injecting drug use is not an exclusion criterion for treatment, but many HCPs are reluctant or unwilling to provide education about this option, refer for treatment, or provide treatment for HCV (Grassi & Ballardini, 2017).
Although Syringe Access Programs (SAPs) provide harm reduction education, some STD and HIV testing, counseling, and clean supplies for the PWID, these settings often do not have licensed HCPs. The use of other venues such as the HCP's office, emergency departments, correctional systems, and mental health care settings may fill in the gaps of providing a comprehensive model of care. The incorporation of harm reduction education, preventative vaccines, and counseling and testing of high-risk persons by an informed and nonjudgmental HCP may reduce the risk of preventable chronic disease and illness for the PWID. Little is known about the factors that may facilitate the use of preventative services among PWID. Studies to identify the preventative care received, where care is received, and how often care was received are needed to design services aimed at improving the quality of preventive care received by PWID. To address this gap, the following aims guided the study: 1) Describe past year PWID health care service utilization; 2) Describe past year PWID preventative health care service utilization; 3) Describe past year receipt of PWID health care education; 4) Describe PWID openness of drug use with providers; and 5) Describe preventative health services that should be integrated into the scope of SAPs.
Descriptive cross-sectional study.
Sample and setting
Approval from the University Ethics Review Board was obtained. Data for this article came from a convenience sample of 141 persons recruited through flyers and word of mouth from two SAPs in the northeast aspect of the United States from April to May (7 weeks). The two SAPs are located approximately 15 miles from each other but represent diverse ethnic/racial, social, and economic environments. Criteria for inclusion in the study were being aged 18 years or older, able to speak and understand English or Spanish, and self-identify as a PWID. Exclusion criteria were those unable to follow simple directions, spoke a language other than English or Spanish, or did not identify as a PWID.
An investigator-developed survey was created to obtain information around the following variables: primary care provider (PCP) past year access, barriers to access care, harm reduction topics discussed with their PCP, recent injection-related infection/abscess/treatment, PCP-related care including preventative care and vaccinations, prior year urgent care access, emergency department care access, and inpatient and outpatient history over the prior year. Five content experts designed the survey, and nine PWID pilot tested the survey. Each preventative service option was recoded as ever received or never received (See Supplemental Digital Content 1, http://links.lww.com/JAANP/A19).
When asked to identify if they had seen their PCP in the past year, if they answered yes, they were instructed to move onto the next question. If they answered no, they were asked to identify any of the listed reasons for not seeing a PCP within the last year. The PCP was not defined and could include medical doctors, doctors of osteopathy, nurse practitioners (NPs), or physician's assistants. The medical literature and existing prevention guidelines were reviewed to identify the preventative services and harm reduction education to include in the survey for PWID (WHO, UNODC, UNAIDS, 2013). Participants were also asked to provide demographic information (e.g., age gender, and marital status).
Several summary variables were constructed after all data were obtained. Variable descriptions for each summary variable are described below.
- 1) The percent of preventative services received: women: Pap smear, anal Pap, mammogram, colonoscopy, cholesterol, tuberculosis (TB) test; men: anal Pap, colonoscopy, cholesterol, TB test (range = 0–100%).
- 2) The number of preventative vaccines obtained: flu, Pneumovax, hepatitis A, Hepatitis B virus (HBV), and tetanus (range = 0–6).
- 3) The number of harm reduction education topics discussed with PCP: safer injection technique, needle exchanges, intranasal naloxone, overdose prevention, safe sex education, drug counseling, pre-exposure prophylaxis (PrEP), testing for HBV, and Testing for Hepatitis C virus (HCV) (range = 0–9).
- 4) The number of barriers to seeing PCP: no insurance coverage, not needed, I am healthy, unable to afford co-pay, do not feel comfortable with provider, no time, scared to see a provider, do not have a provider, cannot get to provider's office, other (describe) (range = 0–9).
- 5) The number of health advice options chosen: partner, friend, family member, provider's office, needle exchange, other (describe) (range = 0–6).
- 6) The number of urgent care visits in the past year.
- 7) The number of emergency department visits in the past year.
- 8) The number of outpatients services accessed in the past year.
- 9) The number of inpatients services accessed in the past year.
- 10) The number of health issues received treatment for in the past year: hypertension, diabetes, asthma/Chronic Obstructive Pulmonary Disease (COPD), hepatitis A, HBV, HCV, HIV, arthritis, mental illness, sexually transmitted disease (STD), endocarditis (range = 0–11).
The institutional review board (IRB) at the university approved this study. All counselors at both SAPs were trained by the principal investigator to be research assistants and were members of the research team. Training included human subject protection, recruitment by the posted flyer and a copy of the consent form in the waiting room, reading an IRB reviewed script for participant recruitment, obtaining consent, completion of the survey, and ensuring data remained stored in a locked cabinet. On entering the waiting room of the SAP, participants were encouraged to review the posted flyer and copy of informed consent. After the individual received the services they visited the SAP for, the counselor asked if the participant was interested in completing the survey. After informed consent was obtained, the participant either completed the survey or at the request of the participant, the counselor asked the survey questions and filled in the survey for the participant in their presence after verbally confirming their response. All surveys were completed via paper/pencil administration and completed in a private room. At the completion of the survey, all participants were given a five-dollar gift card to a local coffee shop.
After all data were entered, they were analyzed via SPSS V.24. Descriptive statistics were performed for most analyses. To compare differences in outcomes based on past year health care utilization and PCP knowledge of drug use, independent t-tests and chi-square analyses were performed based on the level of measurement of the outcome variable.
For this study, 141 PWID were recruited from two independent recruitment locations: city A (n = 109; 77.3%) and city B (n = 32; 22.7%). Independent t-tests were performed to compare all study variables between the two locations. There were no significant differences identified in key study variables by study recruitment location (all p values > .10); thus, analyses were collapsed across study recruitment locations, and all analyses were performed on the total sample (n = 141).
Mean participant age was 37 years (SD = 9.8; range = 18–64 years); 63.1% were male. The majority (75.0%) was single, white (69.8%), and most had health insurance (92.9%). Many lived in an apartment (40.4%), and being homeless was the next most frequent response (36.9%). The remaining participants lived in a house (14.9%) or responded “other” (7.1%), and this included sleeping in a tent or “couch surfing.”
Of the 139 participants who provided information on drug injection history, the mean number of injections per day was 5.3 (SD = 3.6, minimum = 1, maximum = 20). The most frequent injected drug was heroin (70.9%) followed by cocaine (28.4%) and 40% injected both. Other reported drugs injected reported less frequently (6.4%) included buprenorphine, crushed opioid pills, benzodiazepines, methamphetamine, and ketamine. The mean years of injection drug use were 10.4 (SD = 8.9, minimum = 0.1 year, maximum = 45 years).
Primary care provider visit frequency, identified barriers, and drug use awareness
More than half of the sample (60.6%) reported seeing their PCP in the past year. Mean number of barriers to receiving primary care was low (mean = 0.5, SD = 0.8). The most common reason for not seeing their provider included not having a provider (17.1%), “other” (10.7%), “no time” (5.7%), “can't get to the office” (5.7%), and “not needed, I'm healthy” (4.3%). The least common reasons included “don't feel comfortable with provider” (2.9%), no insurance coverage (1.4%), unable to afford co-pay (1.4%), and scared to see a provider (1.4%). Reasons described under “other” included: not caring about going or feeling it is a waste of time, being incarcerated during this time, the backlog for an appointment, owing a copayment, kicked out of practice, and PCP unaware of participant's drug use.
Participants were asked to report if they had been treated for a variety of health conditions over the past year. Health conditions reported were hypertension, diabetes, asthma, HIV, arthritis, endocarditis, STDs, mental illness, and hepatitis A, B, and C.
The health condition that received the most treatment in the past year was mental illness (52.5%), followed by HCV (27.3%). The other commonly treated conditions were asthma (19.4%), arthritis (12.9%), and hypertension (10.9%). Very few participants received treatment for endocarditis (4.3%), diabetes (3.6%), HBV (2.2%), and HIV (1.4%), and none reported seeing their PCP for supportive treatment for hepatitis A. The mean number of health conditions, which were treated in the past year was 1.3 (SD = 1.1). Just under one-quarter of the sample (24.8%) received no treatment in the past year for any of the conditions queried; the maximum number of conditions treated in the past year was five.
When asked if their provider knew of their drug use, 62.1% (N = 124) reported that their provider was aware of their use and 12.1% did not respond to this question. Several participants wrote comments including, “has in the past, not aware of current use since relapse” and “not even a clue and I see him every month for my lupus.”
There was a significant difference in the percent of participants who saw their provider in the past year based on provider awareness of drug use. A more significant proportion of participants whose providers were aware of their drug use saw their provider in the past year (χ2 = 34.4, p < .001). Among those whose providers were aware of their use, 85.5% (n = 65) had seen their provider in the past year. Among those whose providers were unaware of their drug use, only 33.3% (n = 15) received care from their PCP in the past year.
Provider education about harm reduction
When queried about provider discussion surrounding nine harm reduction topics, the most frequently reported discussion topic was testing for HCV (44.3%), followed by drug counseling (37.9%) and testing for HBV (35.7%). Providers talked less often with participants about safer sex (33.6%), overdose prevention (30%), needle exchange programs (27.1%), safe injection techniques (24.3%), and PrEP (12.2%). The average number of harm reduction discussion topics reported was just under three topics (mean = 2.8, SD = 3.3). When examining only those who saw their provider in the past year, the average was four topics (mean = 4.1, SD = 3.4). However, 24.4% of the sample that saw their provider in the past year reported that they did not have any harm reduction conversations with their provider.
Soft tissue infections
Among the 44 participants who reported a soft tissue infection, all but four received some treatment for their infection. Among those who had an infection (N = 44), the most frequent treatment was antibiotics (56.8%), followed by a compress (36.3%) and then lanced (34.1%). The majority of the care was provided at the emergency department (56.8%) while only 4.5% received treatment at an urgent care location.
Access sites for health care needs
The most common sites at which health care was received were outpatient and emergency care, while inpatient care was used least. Of the 141 persons queried, 56.7% accessed the emergency department (ED), 56% sought outpatient care, 27.7% went to an urgent care clinic, and 21.3% had an inpatient admission in the previous year. Among the 30 patients who reported an inpatient stay, 80% had at least one inpatient stay due to a mental health concern. One patient reported 11 inpatient hospital stays due to mental health. Over half the participants who reported at least one inpatient stay (63.3%) indicated that the stay was due to self-harm or drug withdrawal (53.7%).
The most common reason for seeking care at an urgent care facility was illness. Mental health concerns were the second most prevalent reason. They went to an urgent care facility the least frequent when a disease or illness was worsening. Mental health concerns were the most common reason for a visit to an ED, followed by an infection. Similar to reasons for an urgent care visit, a disease or illness that was worsening was the least frequent reason reported. Just less than 10% of the sample went to the ED due to an overdose (Table 1). Reasons listed for seeking care at an urgent care center under “other” included: respiratory difficulties, “to seek depression meds,” and to seek a “buprenorphine prescription.” Reasons listed for going to the ED under “other” included: respiratory difficulties, complications of drug use, seeking detox, and injuries.
When asked if individuals would seek health care services at the SAP if it were available, 92.1% reported yes. Among the 92.1% who reported they would seek health care services at the SAP, 97.8% indicated they would feel comfortable receiving care at the SAP, and 78.9% reported it would be convenient. Only one participant reported that he or she would not be comfortable receiving health care services at the SAP. Many participants wrote comments reporting feelings of trust, not feeling judged, receiving excellent information, resources and counseling by the staff, and feeling respected and understood by the staff.
On average, participants had received 31.6% of the preventative health screening and testing services; 12.3% of the sample received none of the preventative health services queried, and not one of the participants had received all health services. The majority of women had received gynecologic care (88.2%), and the majority of participants had been tested for tuberculosis (TB) (76.3%) (Table 2). Participants reported more receipt of preventative health vaccinations (mean = 2.2, SD = 1.6), and only 20.6% of participants indicated that they had not received a single vaccine. The most common vaccine received was tetanus (68.3%) followed by Hepatitis B (48.2%) and Hepatitis A (46.0%).
Health support network
SAPs (57.9%) and friends (53.6%), family (46.4%), and partner (45.4%) were the most commonly used resources for health advice and support. The least common health support option chosen by participants was their PCP (25.7%) and other (7.9%). On average, participants reported obtaining health advice support from just over two health support options evaluated (mean = 2.4, SD = 1.6) and just over 10% obtained health advice from all the potential resources.
Evaluation of health care services received
As mentioned previously, several summary variables were constructed to evaluate overall services received by participants. Independent t-tests were performed to examine if the mean number of services was different based on three different dichotomous independent variables: 1) prior year access of a PCP, 2) PCP knows about their drug use, and 3) prior year access of PCP only for those whose PCP was aware of drug use.
Analyses examining summary variables based on whether a participant saw a PCP in the past year identified several significant differences based on group membership. Individuals who had seen their PCP in the past year had received more provider education about harm reduction concepts, identified fewer barriers to PCP care, received more health advice from family and friends, and had more conditions treated in the past year (Table 3).
Analyses examining summary variables based on whether a participant's PCP was aware of their drug use identified several significant differences based on group membership. Individuals whose provider was aware of their drug use received more vaccinations (t = −2.1, p = .039), received more provider education about harm reduction concepts (t = −8.9, p < .001), identified fewer barriers to PCP care (t = 2.5, p = .016), and received more health advice from family and friends (t = −2.8, p = .006) (Table 4).
In the final analyses, the sample was restricted only to those whose provider was aware of their drug use. This analysis examined summary variables mean differences between those who had seen their PCP in the past year and those who had not. Individuals who had seen their provider in the past year had an increased number of inpatient hospital stays (t = −2.3, p = .023), reported fewer barriers to PCP care (t = 5.2, p < .001), and had more conditions treated in the past year (t = −2.1, p = .037) (Table 5). Of interest, there were few other significant differences between groups. Participants did not differ on the number of preventative services, vaccinations, ED visits, and urgent care visits based on utilization of their PCP in the past year, and there were also no difference between these two groups in PCP discussion frequency and received health advice.
This study characterizes the preventative health needs, educational needs, and site of received health care for 141 PWID in two cities in the northeast United States. Our results show that PWID using SAPs in these two cities have substantial unmet preventative health services and harm reduction education needs. Prior to the Affordable Care Act, access to health insurance was thought to be a significant barrier to PWID's access to health care and preventative treatment (Riley, Wu, Junge, Marx, Strathedee & Viahov, 2002). The number of PWID in this study with health insurance was 92.9% and was higher than the national rate of 91.2% in 2016 (United States Census Bureau, 2017).
Despite having health insurance, only 60.6% saw their HCP in the previous year even though 75.2% reported having a chronic disease. According to the National Center for Health Statistics (2017) in 2016, the percentage of adults who had no health care visits in the past 12 months was 23.3% for adults aged 18–44 years and 13.7% of those aged 45–64 years. In the current sample, 40.5% of those aged 18–44 years and 47.1% of those aged 45 years and older had not seen a provider in the past year. In this sample, more than 25% reported having difficulty finding or accessing a provider due to actual or perceived barriers.
When the PWID does not see their PCP on an annual basis, their chronic diseases cannot be monitored, they miss opportunities to receive preventative care, and the ability to discuss their drug use with their provider is missed. For this sample, 52.5% reported having a mental illness, 27.3% had HCV, 19.4% had asthma, 12.9% had arthritis, and 10.9% had hypertension. These chronic conditions require ongoing surveillance and treatment and except for treatment for HCV, are conditions that can be initially treated by a PCP. Primary and preventative health care provided by a PCP can benefit the PWID and decrease their morbidity and mortality risk related to their drug use.
Abscesses and other soft tissue injuries are a common and potentially deadly complication of drug use. For this study, the mean number of injections per day was five, with a low of one and a high of 20. The risks of skin and soft tissue damage, sepsis, and endocarditis increase with each injection. Of the 141 persons in the study, 44 reported an abscess and 38 received treatment, with the majority (56.8%) receiving care in the ED. Although the reason for seeking care at the ED was not assessed in the study, fear of pain, withdrawals, and stigma from the HCP have been noted to be barriers to persons accessing care for their skin and soft tissue injuries (Harris, Richardson, Frasso, & Anderson, 2018). Developing a trusting relationship with the PCP early in an individual's drug use trajectory may allow for quicker intervention in reducing the risk of soft tissue injuries, drug-related infections, blood-borne diseases, and overdose. SAP counselors provide education and clean supplies for safer drug use. However, by the time an individual accesses a SAP, they may have already been engaging in risky behaviors exposing them to blood-borne diseases and STDs. Improving perceived and actual barriers to care and decreasing HCP stigma is a critical component of risk reduction services and general health care (Hawk, et al., 2017).
Research has shown that harm reduction is a practical and cost-effective approach to reducing the adverse outcomes of injecting drug use among PWID (WHO, UNODC, UNAIDS, 2013). For this sample, there was a significant difference in the care received between those that had a PCP that was aware of their drug use, than those that had a PCP that was unaware. Despite more than 60% of the study participants seeing their PCP within the previous year, the number and type of education received was low. Primary care providers must be provided with drug-related training and resources for referral and treatment for PWID to effectively decrease substance use related harm. Of those who did not see a provider, the primary reason was they did not have a provider to visit. Inquiring about an individual's access to and relationship with their PCP is an essential element to address during all health care encounters in any health care setting. For both SAP sites in this study, there was a hospital within a 3-mile radius and many HCPs located within the city. Ensuring that all HCPs receive training to implement a systematic way of inquiring about and assessing for substance use is critical to begin the conversations to incorporate harm reduction concepts for people who use drugs. Using the guidance of suggested preventative measures outlined in the WHO, UNODC, UNAIDS (2013), and CDC (2016), documents will provide the necessary information to provide evidence-based care to this population.
For PCPs that were aware of the individual's drug use, the individual received a higher number of preventative services, harm reduction education, vaccines, and had more of a support network than those whose PCP was unaware of their drug use. Data were not collected to determine if the person disclosed to the PCP or if the PCP inquired or discovered the individual's drug use. Of interest, the number of visits to an urgent care or ED setting was higher than those that had not been seen by their PCP. Data were not collected to determine if their PCP referred individuals to these settings or if the individual had a higher level of health-seeking behaviors as evidenced by having contact with their PCP. Mental health concerns were the most common reason for accessing care in an emergency department. This type of visit is well documented in the literature as persons with serious mental illness use the ED for care as they often have poor access to primary care treatment (Tang, Stein, Hsia, Maselli, & Gonzales, 2010). Primary care providers are the frontline for the treatment of mental health disorders and play a significant role in decreasing the comorbidities related to PWID and mental health disorders (National Institute on Drug Abuse, 2018). Finding ways to increase the PWID's access to a PCP may allow for diagnosis and initial treatment of mental health disorders, thereby decreasing the costs and utilization of the ED for nonemergent mental health issues.
Social support has been shown to increase access and decrease barriers to care (Matsuzaki, et al., 2018). This study did show reassuring health support networks for the PWID with friends and the SAP being the most common resource to get health advice. Participants reported that the SAP was a safe place where they did not feel judged and received nonbiased information about their drug use. Incorporating the PCP into the care team in a SAP can increase the PWID's willingness to engage in treatment as they are already in a setting they feel comfortable receiving harm reduction information (Bartlett, Brown, Shattell, Wright, & Lewallen, 2013). The NP can improve the health of the PWID and assist the individual with building relationships with HCPs outside of the program. In one study, a nurse-led health promotion program was held at five SAPs and resulted in an increase in individuals receiving care for wounds, access to perinatal care, sexual risk reduction counseling, nutritional counseling, vaccinations, TB testing, referrals, and linkages to care (Burr, et al., 2014). The authors of this study found that people who use drugs will seek out care that can be provided immediately, but additional services were often requested and received once the individual sought care.
More than 92% of the subjects in our study responded that they would obtain primary health care services at the SAP. However, the nonprescribing practitioner's scope of practice is limited without a licensed medical provider's oversight. In one study, observation of the NP visit showed that the NP spent the most time history taking, providing education, and planning treatment, in addition, they also did active listening and physical assessment (Weyer, Cook, & Riley, 2017). These are essential components of the needs of this population in an outpatient setting because their care can be fragmented due to their often chaotic drug use. Increasing the amount of health education services available at a SAP by employing an NP to provide care is one way to incorporate prevention, early identification, treatment, and referral for treatment for common health conditions seen in this population. In a study where managers and health navigators at SAPs located throughout Massachusetts were interviewed, one noted difficulty was referring individuals to treatment due to difficulty finding providers who were culturally competent toward providing care to PWID (Stopka, Hutcheson, & Donahue, 2017). Incorporating addiction trained NPs and nurses to see clients at the SAP and meeting people where they are can decrease drug-related harms experienced by this population.
Along with the counseling, education, and testing provided by SAP staff, the NP could diagnose and treat individuals early in their disease or illness, thereby reducing overall health care costs and decreasing long-term complications of the untreated condition. The use of PrEP has been shown to increase with the development of a good raport with the HCP and individualized support. (Scholl, 2016). In addition, buprenorphine prescribing can be an effective way of taking advantage of the spontaneous treatment requests for those wishing to cease their drug use. Providing a bridge of care transitions to specialists can improve medication and treatment adherence for those with HCV and HIV.
Memory recall of health care advice and care received within the last year was difficult at times and required further prompting if the individual asked questions while taking the survey. At times, some participants had difficulty understanding some of the medical terms queried (e.g., anal Pap, TB test). Although the additional explanation was provided, it is not clear if any confusion remained, which would lead to increased unreliability in subject responses. Finally, the findings are limited to two SAPs and may not be generalizable to PWID in other cities or parts of the country.
We found that the PWID do not receive the preventative health care screening and services they need. Having a PCP aware of an individuals' drug use increased the education provided and the preventative services being performed. Future research strategies using data obtained from the PWID's electronic health record should be considered. The PWID in this sample were in favor of receiving treatment at the SAP. The NP and nurse at the SAP could treat the unmet preventative health care services, education, and vaccinations, along with generalist care for common diseases such as hypertension, arthritis, and diabetes. Recognizing the unique needs of PWID is critical to reducing the health care disparities experienced by this vulnerable population.
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