Improving Identification of At‐Risk Behaviors in Adolescents With Rheumatic Disease

Abstract

Objective

Many adolescent patients view their rheumatologist as their primary physician, and therefore it is important to screen youth for sexual activity and substance use as recommended by the American Academy of Pediatrics. We implemented an electronic social history questionnaire (SHQ) and alert system to identify at‐risk behaviors in adolescents with rheumatic disease.

Methods

The SHQ was administered to adolescents 14 years and older with a goal to survey patients’ sexual activity and alcohol, tobacco, and drug use. The SHQ was given via tablet at each rheumatology outpatient visit. A positive response triggered a best practice advisory (BPA) alert when the chart was opened to remind the clinician to discuss these results privately.

Results

A total of 877 unique patients were surveyed. Ninety patients (12%) reported being sexually active, and sexually active patients were significantly older than those who were not (17.2 vs 15 years; P < 0.001). Seventy‐two percent of patients were female, and the mean age was 15.8 years. Sexually active patients were more likely to be smokers, to drink alcohol, and to use other drugs (P < 0.001). Strong associations were observed between alcohol use and male sex (P = 0.0227), White race (P = 0.0052), and public insurance (P = 0.0021).

Conclusion

Overall, 12% of patients reported being sexually active, underscoring the need to screen adolescents for sexual activity given many rheumatology patients take teratogenic medication. A smaller proportion used substances. Implementing an electronic medical record–based SHQ can help identify patients most at risk, and the BPA serves as a useful tool to remind clinicians to discuss the SHQ privately.

INTRODUCTION

Adolescence is a unique and pivotal time in childhood development that involves transitioning from childhood to adulthood. During this time, adolescents and young adults (AYA) may become sexually active and experiment with licit and illicit substances.

SIGNIFICANCE & INNOVATIONS.

• Adolescents and young adults with rheumatic disease are as sexually active as their peers.

• As pediatric rheumatologists, we should be screening our patients for risky behaviors, but we assume our patients’ pediatricians are doing this.

• By implementing an electronic medical record (EMR)–based social history questionnaire (SHQ), we were able to identify that a significant number of our patients are sexually active and a smaller number use substances.

• Using an EMR alert system is a helpful tool for clinicians to identify which patients may need counseling or intervention based on SHQ responses.

The American Academy of Pediatrics (AAP) recommends pediatricians screen for sexual activity and substance use yearly, as well as perform risk screening for sexually transmitted infections (STIs). ¹ Although pediatric rheumatologists acknowledge the importance of sexual and substance use discussions, most assume their patients’ pediatricians are addressing these topics. ² Many rheumatologic patients, however, view their subspecialists as their primary care providers, making the subspecialty clinic visit an important opportunity to effectively screen and counsel AYAs on sexual activity and licit and illicit substance use. ³ , ⁴

Literature confirms AYA patients and their families desire to have reproductive health discussions with their rheumatologists. ⁵ Moreover, concurrent use of licit and illicit substances with certain teratogens in rheumatologic patients may result in additional health problems, such as cardiovascular and liver disease. ⁶ Although the American College of Rheumatology acknowledges a need for reproductive and sexual health education in patients with rheumatic disease, there are no clear guidelines for screening pediatric patients for sexual activity and licit and illicit substance use. ⁵ , ⁷ Research demonstrates that AYAs with chronic disease are as sexually active as their peers; however, data specific to AYA rheumatology patients are lacking. ⁸ , ⁹ Rheumatology AYA patients need to be screened for sexual activity and licit and illicit substance use to reduce their risk for harm.

Our goal is to use a survey as a tool to identify those who are participating in such behaviors. Phase 1 of this study includes implementing a social history questionnaire (SHQ) and alert system, and future phases may explore outcomes and possible solutions.

PATIENTS AND METHODS

Context

This study was conducted at a single‐center specialty outpatient clinic in an urban city. The project team included a rheumatology fellow as team lead, a rheumatology physician, an adolescent medicine physician, a research coordinator, a medical assistant (MA), and electronic medical record (EMR) specialists. This study was approved by the institutional review board, and a quality improvement consent was obtained. This study was conducted from December 2020 to October 2022 and is ongoing.

Design and intervention development

The intervention included implementing an adolescent SHQ that was provided to rheumatology patients confidentially. The project team met and selected the questionnaire, which included questions regarding sexual activity and drug, alcohol, and tobacco use (Table 1). The SHQ was already built into our institution's EMR and was provided in English only. The initial concerns raised by the project team involved patient confidentiality. Texas law was reviewed with the project team, and per Texas Family Code 32.003‐004, minors can legally give consent to diagnosis and treatment of STIs and counseling of substance use, and providers are legally required to maintain the confidentiality of care provided to a minor. ¹⁰

Table 1.

Social history questionnaire questions and responses^*

	Responses
Smoking questions
What is your smoking status?	Heavy smoker
	Current everyday smoker
	Light smoker
	Current some day smoker
	Former smoker
	Passive
	Never
If response is yes, select all types of tobacco	Cigarettes, pipe, cigars
	Optional: packs per day, years, start date, quit date
Do you use smokeless tobacco?	Current user
	Former user
	Never used
	Optional: quit date
Drug use questions
Do you use drugs?	Yes
	Not currently
	Never
	Optional: use per week
What types of drugs? (Select all that apply)	IV
	Cocaine
	Marijuana
	Methamphetamines
	Amyl nitrate
	Barbiturates
	“Crack” cocaine
	Fentanyl
	Amphetamines
	Anabolic steroids
	Benzodiazepines
	Codeine
	Heroin
	Solvent inhalants
	Hydromorphone
	PCP
	Nitrous oxide
	Other
Alcohol use questions
Do you use alcohol?	Yes
	Never
	Not currently
Alcohol use per week	Glasses of wine: 1, 2, 3, 4, other
	Cans of beer: 1, 2, 3, 4, other
	Shots of liquor: 1, 2, 3, 4, other
	Standard drinks or equivalent: 1, 2, 3, 4, other
Sexual activity questions
Are you sexually active?	Yes
	Not currently
	Never
If yes, select type of partner	Female
	Male
If yes, select birth control/protection. Select all that apply	Condom
	Pill
	Diaphragm
	IUD
	Surgical
	Spermicide
	Implant
	Rhythm method
	Injection
	Sponge
	Inserts
	Abstinence
	Coitus interruptus
	Cervical cap
	Ring
	Emergency contraception
	Other

^*IUD, intrauterine device; IV, intravenous; PCP, phencyclidine.

At every visit during the rooming process, all patients 14 years and older being seen in the rheumatology clinic were given the survey. The adolescent was given a tablet with a privacy screen to allow for optimal confidentiality and was instructed to complete the questionnaire without adult assistance or supervision. The MA on the team was trained on providing the SHQ to patients, discussing confidentiality, and releasing the SHQ into the EMR. If the SHQ was not completed by the patient by the time the patient completed rooming, the MA would receive a best practice advisory (BPA) to remind them to provide the tablet to the patient. This same SHQ was given at every rheumatology visit. The results were automatically inputted in the EMR questionnaire section and were not viewable by guardians unless specifically requested.

After discussion with the AYA specialist, it was decided to start screening youth 14 years and older because that is the age youth can legally have sex in Texas, although the age of consent is 17 years old. In the state of Texas, the Romeo and Juliet Statute may protect minors from prosecution provided that both participants are within three years of age, over the age of 14, and willingly engage in sexual conduct. ¹¹

If the patient had completed the SHQ previously, the responses were carried over from the previous visit, and patients could change their responses if warranted. If the patient were to select “yes” to any of the mentioned behaviors, the clinical staff would be notified by a BPA upon opening the patient chart. Clinical staff included attendings, fellows, pediatric residents, medical students, and registered nurses. The BPA would then notify the clinician of the positive result and direct them to review the questionnaire. The BPA would fire only once per clinical encounter to prevent BPA fatigue. After the BPA was triggered, the clinician would need to acknowledge the alert and click to verify that they will take action. If there were no identified risky behaviors, the clinical staff would not be notified of completion of the questionnaire and would need to review the results unprompted.

Following a positive survey response, the clinician would then interview the youth privately during the clinic encounter as appropriate. If there were concerns for substance use disorder or mental health issues, an in‐clinic social worker could meet with the patient.

Study of intervention

We evaluated the intervention with executed tests of change to improve staff awareness, the SHQ completion rate, and the BPA firing rate. The first issue we came across during this implementation was remembering to provide a patient with a survey and transferring the responses electronically into the EMR. The BPA alert was an important tool to remind the MA to give the patient a survey and upload responses.

In the following weeks during data review, we realized the positive response BPA was only firing for attending physicians and not for the trainees in the clinic. The project team met, and the EMR specialist was able to add subspecialty fellows, pediatric residents, and medical students to the BPA alerts for positive SHQ responses. Given the outpatient clinic was especially busy, a decision was made to add registered nurses to the BPA alerts to help prompt clinicians to review SHQ responses when positive. A review of positive SHQ responses and the BPA firing rate was done quarterly to ensure the project was working effectively.

Statistical measures

Measures were analyzed by a biostatistician. Responses to sexual activity and drug, alcohol, or tobacco use were compared to patient sex, body mass index, insurance status, race, and ethnicity. These data were extracted from the EMR, and the chi‐square test, Fisher's exact test, and the Kruskal‐Wallis test were used to evaluate differences in patients who did and did not have a positive response, as appropriate. Given the small number of positive responses, analysis stratified by covariates was unattainable. Considering some patients may have taken multiple SHQs and changed their answer, if they ever responded “yes” to a risky behavior, this was included in our analysis. Only one response per patient was recorded. Positive responses were consolidated over this study and are included in Table 2. Tablets were already in use, so no additional funds were needed to secure technology. Privacy screens were purchased at a low cost to help with patient confidentiality.

Table 2.

Positive SHQ responses^*

SHQ parameter	Positive responses, n	Percentage, %
Sexual activity	107	12.2
Type of contraception
Abstinence	2	1.87
Condoms	56	52.3
Diaphragm	1	0.93
Emergency contraception	1	0.93
IUD	10	9.3
Implant	6	5.6
Injectable contraception	7	6.5
Patch	2	1.87
Pill	25	23.4
Spermicide	1	0.93
None	6	5.6
Drug use	28	3.19
Marijuana	20	71.4
Anabolic steroids	1	3.57
Tobacco use	8	0.91
Cigars	2	25
Pipe	1	12.5
Alcohol use	29	3.31
Average drinks per week	2.1	–

^*All positive responses were consolidated over the course of the study and are depicted once per patient. Type of contraception, drug type, and average number of drinks per week were optional SHQ responses. IUD, intrauterine device; SHQ, social history questionnaire.

RESULTS

Eight hundred seventy‐seven unique patients were provided the SHQ and seen in the rheumatology clinic for a total of 2,673 individual surveys during the specified time period. During the first year (December 2020 to December 2021) there were 1,563 total visits, and all but 186 surveys were completed, making our screening rate 88% for the first year. During our second year (December 2021 to December 2022) the screening rate increased to 91%.

Patient demographics are depicted in Table 3. Most patients identified as being non‐Hispanic White (73%). More than 75% of clinic patients were female. The mean age overall was 15.8 years, and the mean age for those who reported being sexually active was 16.9 years. Overall, 12% of surveyed patients reported being sexually active. Three percent of patients reported using illicit drugs, 3% reported using alcohol, and 1% responded yes to tobacco use (Table 2). Notably, patients who reported use of alcohol, tobacco, and/or drugs were more likely to be sexually active (P < 0.0001). Patients were given the option to select a type of alcohol, tobacco, and drug, and responses are delineated in Table 2. There was no association between sexual activity and insurance status, although there was an association found for White race (P <0.0001). Two‐group comparisons for alcohol use, smoking status, and drug use were conducted using the chi‐square test or Fisher's exact test. Strong associations were observed between alcohol use and male sex (P = 0.0227), White race (P = 0.0052), and public insurance (P = 0.0021). Similarly, significant associations were found between smoking and White race (P = 0.0002), as well as private insurance (P = 0.0121), and between drug use and private insurance (P = 0.0157).

Table 3.

Demographics of rheumatology patients surveyed in the clinic^*

Parameter	Total no. of patients	Percentage of patients, %
Sex
Male	572	24.11
Female	1,800	75.89
Body mass index
Underweight (<5th percentile)	102	4.41
Healthy weight (5th–85th percentile)	1,313	56.77
Overweight (85th–95th percentile)	424	18.33
Obese (>95th percentile)	474	20.49
Race
White	1,738	73.27
Black or African American	309	13.03
Asian or Asian American	125	5.27
American Indian or Alaskan Native	41	1.73
Other	159	6.70
Ethnicity
Hispanic	796	33.56
Non‐Hispanic	1,571	66.23
Did not respond	5	0.21
Insurance status
Private commercial insurance	1,338	56.41
Government funded	876	36.93
None	158	6.66

^*Demographics include all patients who completed the social history questionnaire in the clinic over the course of the study.

DISCUSSION

In this study, we implemented an SHQ into our outpatient rheumatology clinic and increased surveying risky behaviors from a baseline of 0% to 88% in the first year. Of the reasons for a survey not being completed, we found the biggest issue to be in the first few weeks, when the staff was learning a new task. Reminders by word of mouth from the team and BPA instructions were essential.

We found that a significant number of our patients are sexually active, and a smaller portion are using illicit substances that pose a potential health risk. This is an important finding given we were not assessing such behaviors regularly before this study. Further data and chart review are needed to quantify by diagnosis the number of patients who are sexually active and/or using teratogenic medications. These findings mimic the literature and raise concerns regarding the need for more discussions surrounding reproductive health, substance use, and chronic disease. Although our rate of sexually active AYAs is less than reported by the Centers for Disease Control and Prevention (12.2% vs 29%), a similar percentage of our patients reported condom use (52.3%). Twenty‐five percent of our surveyed patients documented contraceptive use, which is lower than the national average of 33%, although many patients did not disclose any contraceptive use.

Our cohort demonstrated a lower rate of sexual activity (12% vs 21%) and alcohol use (3% vs 38%) compared with a study of adolescents with lupus diagnosed in Brazil. ¹² Although our group was substantially larger than the Brazilian cohort, the discrepancy could also be contributed to the difference in culture and legal drinking and smoking age. However, we feel that underreporting was likely the case, especially in the beginning, when the survey was first rolled out.

Barriers to providing the survey included hesitant patients or caregivers, time constraints, and confidentiality. In the beginning, many patient caregivers were accustomed to completing preappointment surveys for the adolescent, and the same was true when introducing this SHQ. Therefore, in the beginning and likely without our knowledge, the patient's caregiver was completing the survey in place of the patient. To deter caregivers from doing this, our MA was provided with a prompt to discuss the survey with families and instructed the patient to complete the survey independently. After a few initial cycles, we found this prompt worked for families, and most AYA patients became accustomed to completing the SHQ independently, with low rates of noncompletion.

Clinic disruption was also a barrier in the beginning of this implementation. The addition of another survey to complete before their visit caused slight delays to clinic flow. Once our team was familiar with the survey distribution and discussing with families, this time constraint became less burdensome. There were a few occasions when the patient did not complete the survey before the provider visited with them, and the BPA would not fire until after the clinic visit, potentially missing an opportunity to discuss risky behaviors.

Another limitation was the possibility of the patient not answering truthfully or copying forward their previous responses. An SHQ can be a successful screening measure, but it is imperative that the patient is aware of their confidentiality. Alone time with the adolescent without parental supervision is essential to effective AYA care and is supported by the AAP, among other groups. ¹ Unfortunately, many youths may not disclose information about sexual activity or drug use in front of parents given fear of being judged or retaliated against by a guardian, leading to unreliable or withheld information. ¹³ , ¹⁴ During primary care visits to discuss preventive care with adolescents, physicians spent a mean of 22 minutes in the examination room, and only 31% of physicians discussed confidentiality. ¹⁵ The same study reported the majority of physician and AYA conversations lasted less than 36 seconds. ¹⁵ We attempted to avoid this issue of youth not responding truthfully by using a privacy screen on the tablet, which prevented caregivers from viewing the answers, and ensuring the patient was aware their responses would be kept confidential. Additionally, while the youth was completing the SHQ on the tablet, the caregiver would be filling out additional clinic surveys simultaneously.

Unfortunately, the language used in the SHQ may not have been appropriate for the age range and therefore could have led to underreporting. It is likely that AYAs do not know terms such as coitus interruptus, diaphragm, or the rhythm method. This could be considered a study limitation, and future efforts will be made to change the language. Furthermore, because SHQ responses were carried forward to future encounters, this allowed for responses to be overwritten and potentially introduced bias and an underestimation of risk.

Legal protections in certain states also confound the difficulties clinicians and AYA patients face regarding confidentiality and the right to make autonomous medical decisions. ¹⁶ Most physicians are comfortable addressing sexual health and substance use with their patients, but the majority felt they needed more training on confidentiality laws. ¹⁷ Current research further discloses this issue in a study revealing that young people find confidentiality extremely important and may forego care if it is not achieved. ¹⁴ , ¹⁸

The study team raised concerns regarding who would be responsible for addressing positive responses to sexual activity or substance use. Our clinic has a designated social worker who was able to visit with the patient for concerns of sexual abuse or substance use if needed. They were also able to file legal reports if required. At the time of this study, we did not have a dedicated clinic psychologist, but there were psychology staff available if there were immediate needs such as suicidal or homicidal ideation. Although this study did not focus on counseling rates, our team decided that the provider should be counseling patients confidentially on sexual health, especially if they are on a prescribed teratogen. For patients desiring additional sexual and reproductive health counseling, and specifically contraception, we made referrals to our local AYA clinic.

Albeit this study was focused on pediatric rheumatology, we do feel its use would be beneficial to other subspecialties and pediatricians, especially for those that use teratogens. Therefore, the outcomes of this study are generalizable, and the study design can be repeated for use at other centers. Keys to success included consistent project leadership and involvement of an invested team, participant engagement and buy‐in, and support from the institution.

Further directions for this study include evaluating documented counseling rates, collecting feedback from AYAs on the SHQ language, and testing for trends between disease activity measures and at‐risk behaviors. This is especially important given that the data show a rate of documented contraception counseling to be only 46% in women on teratogens. ¹⁹ Other studies suggest that federal surveillance systems have the potential to improve contraceptive discussions and potentially relieve adverse effects of teratogens. ²⁰

In conclusion, adolescents with chronic disease are using licit and illicit drugs and are as sexually active as their peers. In‐clinic screening using an EMR tool such as a BPA can help clinicians identify patients who are at high risk for substance use disorder or unplanned pregnancy.

AUTHOR CONTRIBUTIONS

All authors contributed to at least one of the following manuscript preparation roles: conceptualization AND/OR methodology, software, investigation, formal analysis, data curation, visualization, and validation AND drafting or reviewing/editing the final draft. As corresponding author, Dr Ciaglia confirms that all authors have provided the final approval of the version to be published, and takes responsibility for the affirmations regarding article submission (eg, not under consideration by another journal), the integrity of the data presented, and the statements regarding compliance with institutional review board/Declaration of Helsinki requirements.

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