Advancing Patient-Centered Care: An International Survey of Adolescent Perspectives on Insomnia

Abstract

Objective:

The study objective was to inform patient-centered care for adolescent insomnia by describing adolescents’ perspectives on insomnia. Specific constructs of interest included: 1) factors that contributed to insomnia development or maintenance, 2) impact of insomnia on their day-to-day lives, 3) recommended research priorities, and 4) overall experience living with insomnia.

Method:

A convenience sample of adolescents (ages 13-18 years) self-identifying with insomnia symptoms was recruited through social media. Respondents (n=3,014) completed an online survey. Responses to an open-ended item assessing patient experience were coded using thematic analysis.

Results:

Participants identified as 70.8% White non-Hispanic, 77.0% female, and lived in one of five English-speaking countries (United States, United Kingdom, Canada, Australia, or New Zealand). Most (87.5%) met DSM-V diagnostic criteria for insomnia. The most common contributory factors to insomnia endorsed were stress (72.1%) and depressed mood (63.6%), while common impact areas were mood (72.2%), focus (61.0%), and pain (49.7%). Patient-centered research priorities were identifying insomnia causes (66.4%) and early detection (66.1%). Common adolescent experiences included high distress levels, feelings of invalidation, and helplessness about their insomnia.

Conclusions:

Adolescents with insomnia offer a unique perspective that should inform patient-centered research and care. There is a need for heightened screening and awareness about insomnia as a condition that causes significant distress and impairment for adolescents. To provide validating care, providers should recognize the multifaceted causes of insomnia.

Insomnia is a sleep disorder defined by difficulty initiating and/or maintaining sleep (AASM, 2014; APA, 2022). An estimated 25-40% of adolescents report insomnia symptoms, with an estimated 7.5-18.5% meeting DSM-5 insomnia disorder diagnostic criteria (Falch-Madsen, Wichstrom, Pallesen, & Steinsbekk, 2020; Hysing et al. 2020; APA, 2013). Normative developmental changes in sleep physiology, lifestyle, and cognitive style during adolescence can contribute to the development and maintenance of insomnia. For example, adolescents experience a normative circadian delay and slower accumulation of sleep pressure, making it difficult to fall asleep at an earlier bedtime (Crowley et al., 2018). Factors such as increased screen use (Hale & Guan, 2015; Lemola et al., 2014), reduced parental involvement at bedtime (Gangwisch et al., 2010; Short et al., 2011) , and a heightened sensitivity to stress and rumination (Spear, 2009) can further contribute to insomnia. Cross-sectionally, adolescent insomnia has been associated with mood, fatigue or sleepiness, substance use and health complaints (de Zambotti et al., 2018). Further, adolescent insomnia symptoms increase subsequent risk for somatic complaints, mood difficulties, substance use, and insomnia in adulthood (Baglioni et al., 2011; de Zambotti et al., 2018; Roberts, Roberts, & Duong, 2008; Roberts & Duong, 2013).

Given the high prevalence of insomnia as well as its associated risk for future health problems (Scott, et al. 2021; Roberts, Roberts, & Huong, 2008) it is important to study insomnia in adolescents. A more robust understanding of the factors that contribute to insomnia development and maintenance during adolescence is critical for identifying therapeutic targets and intervention strategies. While many studies have examined the etiology, prevalence, and consequences of insomnia in adolescents, examination of adolescents’ perspectives and experiences are lacking.

Patient-centered care and research requires the identification of patient perspectives on key areas such as contributors to illness, symptom impacts or consequences, recommended research priorities, and personal meaning of the illness (Frank et al., 2014; Mead & Bower, 2000). A critical assumption in patient-centeredness is that patients have a unique and valuable perspective that can alter and enhance research and care. Several studies have identified etiological factors associated with adolescent insomnia that offer potential treatment targets (de Zambotti et al., 2018); however, direct input from adolescents about key contributory factors is lacking. Patient experiences are uniquely valuable in developing interventions and providing care that addresses these factors. For instance, research on the perspectives of adults with insomnia suggests that patients feel misunderstood by significant others and their care team (Carey et al., 2005), which may adversely impact treatment engagement and effectiveness (Cheung et al., 2013).

While adolescent perspectives on insomnia are lacking, several recent studies have examined adolescent views on sleep health promotion via focus groups. For example, Levenson et al. (2021) identified adolescent perspectives on contributors to good sleep (e.g., physical activity), poor sleep (e.g., excessive homework) and strategies for promoting behavior change (e.g., individual feedback on behavior change goals). A study of healthy sleep in Swedish adolescents highlighted themes around the importance of parental support and family routines in promoting healthy sleep habits (Jakobsson et al., 2022). Finally, Quante et al. (2019) found that adolescent participants identified low prioritization of sleep, electronic use at bedtime, caffeine intake, and environmental disruption as barriers to healthy sleep. While these studies offer important insights about adolescent views on sleep, adolescents with insomnia differ in the type and severity of their sleep disruption (APA, 2022), and thus could have different perspectives.

The study objective was to inform patient-centered research and care for adolescent insomnia by describing adolescent perspectives on insomnia, including key factors contributing to insomnia development or maintenance, areas of impact, research priorities, and overall experience.

Methods

Study Design and Participants

A convenience sample of adolescents with insomnia was recruited through the Facebook social media platform between January and July 2019. Using paid advertising, a post was promoted that included study information and a survey link. The post was targeted to adolescents (13-18 years) who self-identified as currently having difficulty falling or staying asleep, and who were living in one of several English-speaking countries, specifically the United States (US), United Kingdom (UK), Canada, Australia, and New Zealand. The study was over-marketed to specific subgroups to promote sample diversity (e.g., males; racially/ethnically minoritized groups). Eligibility criteria were: 1) aged 13 to 18 years at the time of survey completion; and 2) self-endorsement of one or more insomnia symptoms. The survey was housed on the REDCap electronic data capture platform (Harris et al., 2019). The study was considered by the Office of Research Compliance at the Indiana University School of Medicine as exempt from Human Subjects Review. Participants did not receive any payment or incentive for survey completion.

Survey

Survey content (Appendix A) was developed by the authors, who have considerable combined expertise in clinical care and research on adolescent insomnia. Because existing theoretical models of adolescent insomnia are sparse, and have not incorporated adolescent perspectives, survey development was informed by models of normal adolescent sleep (Crowley et al., 2018; Dahl & Lewin, 2002) and adult insomnia (Gehrman et al., 2012), as well as the overarching objective of informing patient-centered care and research. We elected to use survey methodology to recruit a large sample size that would reflect the diversity of experiences and backgrounds in adolescents with insomnia. An open-ended item and qualitative analysis was also incorporated into the methodology to assess for important perspectives and experiences that may not be identified through survey questions. Specific survey items pertained directly to the aims of identifying key contributory factors, areas of impact, research priorities, and overall experience. For contributory factors, areas of impact, and research priorities, participants had the option to select “other” and provide a written response. Items were piloted with a small group (n=3) of adolescents with insomnia symptoms for clarity and comprehensiveness of response options.

Sociodemographic Information.

Adolescents reported their age, gender, race, ethnicity, and any diagnosed comorbid health conditions, including sleep disorders (e.g., obstructive sleep apnea), behavioral health disorders (e.g., depression; autism), and medical conditions (e.g., asthma; diabetes).

Insomnia Symptoms.

Participants endorsed experiencing one or more insomnia symptoms: 1) difficulty falling asleep at bedtime; 2) difficulty staying asleep; 3) waking up too early (i.e., before your alarm goes off); and 4) difficulty sleeping without a parent, sibling, or pet in the room. Items comprise all DSM-5-TR symptoms for Insomnia Disorder (APA, 2022) and four of the Chronic Insomnia Disorder symptoms included in the International Classification of Sleep Disorders - 3rd edition (ICSD-3; AASM, 2014). A 5^th insomnia symptom (bedtime resistance) was omitted from the survey as it presents most often in young children (Honaker & Meltzer, 2014). Adolescents rated the frequency (<1; 1-2; 3-4; 5-6; 7 nights per week), duration (<3 months; 3-6 months; 6-12 months; 1-2 years; 3-5 years; 5+ years), and problem severity (not a problem; small problem; medium problem; big problem) for each symptom endorsed.

Contributory Factors.

Adolescents endorsed up to three factors they perceived as contributing most to their insomnia from a list of 13 options that included worries/stress, pain, an irregular sleep schedule, and caffeine, among other factors, with one free response (“other”) option (see Appendix A). Response choices were selected by the authors informed by their clinical experience, models of adolescent sleep (Crowley et al., 2018), models of adult insomnia (Gehrman et al., 2012), and prior research on risk factors for insomnia in adolescents (de Zambotti et al., 2018).

Areas of Impact.

Adolescents selected up to three areas of impairment caused by their insomnia that they found to be most difficult from a list of 14 options that included fatigue, mood, and headaches or muscle pain, among other areas, with one free response (“other”) option (see Appendix A). Response choices were informed by the authors’ clinical experience and prior research on the impact of insomnia in adolescents (de Zambotti et al., 2018; Roberts, Roberts, & Duong, 2008).

Research Priorities.

Adolescents were asked “What areas of insomnia do you think are most important for scientists to study?” Respondents could select up to three from a list of nine options, such as causes, diagnosis, pharmacologic and non-pharmacologic treatment, and public awareness (see Appendix A).

Overall Experience.

The survey concluded with an open-ended question, “What else do you think is important for us to know about what it is like to be a teen with insomnia?”

Diagnostic Criteria.

Symptom ratings were used to determine which participants met DSM-5-TR criteria for Chronic Insomnia Disorder using the following metrics: reported difficulties with sleep onset, maintenance, and/or early morning awakenings ≥3 nights per week for ≥3 months resulting in ≥1 area of resulting impairment. Impairment was defined as rating the insomnia symptoms as a “medium” or “big” problem and identifying at least one area of impact. As part of a sensitivity analysis, we also identified those individuals with a symptom profile that could be consistent with insomnia and/or Delayed Sleep Wake Phase Disorder (DSWPD), a distinct sleep disorder that can present similarly to insomnia (Richardson et al., 2019). Based on common clinical characteristics of DSWPD, we operationalized this symptom profile as follows: problematic sleep onset (but not maintenance) ≥3 nights per week for ≥3 months, identification of “not tired” as a contributory factor to difficulty falling asleep, and ≥1 area of resulting impairment.

Analysis Plan

Consistent with the aim of describing patient perspectives, descriptive statistics (frequencies or means and SDs) were reported. We conducted thematic analysis for the open-ended item assessing overall experience. Thematic analysis was selected to identify patterns in the data that reflected common or important experiences among adolescents with insomnia. An initial codebook was created by the first author using open coding, identifying content themes based on the first 100 survey responses. The codebook included a detailed description of each code with content examples. The first author and two research assistants then coded the first 200 survey responses, highlighting any survey responses that did not fit into the existing coding framework. Codes were iteratively refined or added during weekly team meetings. The final codebook was used to double-code 50 by the first author and two coders; the coders initiated independent coding upon receiving ≥80% agreement with the first author. The final codebook is available upon request to the corresponding author. Responses identified as difficult to code were discussed at a weekly team meeting, with disagreement resolved via discussion and consensus. A random sample of survey responses (n=305) were double-coded, yielding a percent agreement of 98.6% and a Cohen’s Kappa of 0.74, suggesting good agreement (Gisev et al., 2013). A word cloud using the text from all open-ended responses was created in Microsoft Word (Figure 3).

Figure 3:

Word Cloud Depicting Adolescents’ Experience with Insomnia

The word cloud is comprised of text from 2,194 participant responses to the open-ended question, “What else do you think it is important for us to know about what it is like to be a teen with insomnia?” The size of each word corresponds to its frequency, with larger words presenting more frequently than smaller words.

Results

Survey Response

Participant recruitment is presented in Figure 1. Per Facebook analytics, the post reached 187,387 unique individuals, of whom 6,767 (3.6%) engaged with the post by clicking on the survey link to learn more about the study. Of note, the target reach for the post was any adolescent living in the five countries, including those without insomnia symptoms who would presumably have been unlikely to click survey link. Of those who clicked the survey link, 3,034 started the survey (44.8%), with 99.3% eligible (n=3,014). A total of twenty participants were excluded either due to having a reported age outside the eligible range of 13-18 years (n=11), no endorsed insomnia symptoms (n=8), or incomplete items beyond insomnia symptoms (n=1). The final sample size (n=3,014) was sufficient to provide population prevalence estimates with a margin of error of ~1.8%.

Figure 1.

Participant Recruitment Flow Chart

Participant Sociodemographic Characteristics

Table 1 shows self-reported sociodemographic characteristics. Estimated participation by country (based on Facebook analytics) was 83.4% United States (US), 8.7% United Kingdom (UK), 4.2% Canada, 2.5% Australia, and 1.2% New Zealand. Approximately 70% of respondents identified as White non-Hispanic. Respondents had a mean age of 16.1 years (SD=1.3). A small proportion of respondents (2.9%) did not provide an age but were included in the analysis as they did report meeting age eligibility criteria (13-18 years).

Table 1.

Self-Reported Participant Sociodemographic Characteristics

Characteristics	Participants (n=3,014)
Gender, n (%)
Female	2,320 (77.0)
Male	519 (17.2)
Other	125 (4.1)
Did not report	50 (1.7)
Race or ethnicity, n (%)
American Indian / Alaskan Native	31 (1.0)
Asian	60 (2.0)
Black / African-American	131 (4.3)
Hispanic	218 (7.2)
Native Hawaiian / Pacific Islander	3 (0.1)
White	2,134 (70.8)
Endorsed more than one race or ethnicity	283 (9.4)
Do not wish to disclose / Did not report	60 (2.0)
Age, n (%)
13	89 (3.0)
14	270 (9.0)
15	491 (16.3)
16	716 (23.8)
17	1,003 (33.3)
18	357 (11.8)
Did not report	88 (2.9)

Insomnia Characteristics and Comorbid Diagnoses

Table 2 presents insomnia symptoms and comorbid diagnoses for the study sample. Key results are also presented by gender, age, and race/ethnicity (Appendix B). Sleep onset difficulty was the most frequently reported symptom (94.4%), followed by sleep maintenance difficulty (65.3%), early morning awakening (54.5%), and sleep-onset associations (22.3%). Another insomnia symptom (“Other”) was reported by 5.3% of respondents. Common “other” responses included nightmares, sleeping lightly, difficulty falling asleep without an association (e.g., TV, overhead light on), waking up feeling unrefreshed, or racing thoughts at bedtime. Only five participants endorsed “Other” without also endorsing another insomnia symptom. Most (87.5%) respondents met DSM-V diagnostic criteria for Chronic Insomnia Disorder. Only 8.3% of the sample had a symptom profile consistent with DSWPD and/or Chronic Insomnia Disorder. Sensitivity analysis excluding those whose symptoms aligned with this profile of DSWPD and/or Chronic Insomnia Disorder did not meaningfully change the study outcomes and thus these individuals were retained. The number of reported comorbid diagnoses were: 0 (2.3%), 1 (24.6%), 2-3 (37.2%), 4-5 (25.0%), 6-7 (8.5%), 8 or more (2.5%). Anxiety (63.2%) and/or depression (55.3%) were the most common comorbidities.

Table 2.

Participant Insomnia Symptoms and Comorbid Diagnoses

Characteristics	Number of Participants (n=3,014)	Most Common Frequency of Symptoms (n[%])
Insomnia Symptom, n (%)
Sleep onset difficulty	2,851 (94.6)	Nightly (1468 [51.4])
Sleep maintenance difficulty	1,991 (66.1)	Nightly (655 [32.6]
Early morning awakening	1,669 (55.4)	3-4x/week (515 [30.8])
Sleep association	701 (23.3)	Nightly (316 [45.0])
Other	160 (5.3)	Nightly (90 [58.8])
Comorbid Diagnosis, n (%)
Anxiety	1,904 (63.2)
Depression	1,666 (55.3)
Allergies	1,060 (35.2)
Asthma	769 (25.5)
Overweight / Obesity	641 (21.3)
Chronic Pain	611 (20.3)
ADHD	533 (17.7)
Eczema	326 (10.8)
Restless Legs Syndrome	219 (7.3)
GERD	207 (6.9)
High Blood Pressure	155 (5.1)
Thyroid Condition	143 (4.7)
Autism Spectrum Disorder	129 (4.3)
Obstructive Sleep Apnea	71 (2.4)
Diabetes	58 (1.9)
Heart Disease	30 (1.0)
Sickle Cell Disease	7 (0.2)
Other	324 (10.7)

Note: ADHD = Attention-Deficit / Hyperactivity Disorder

GERD = Gastroesophageal Reflux Disease.

Contributory Factors, Areas of Impact, and Research Priorities

Figure 2 displays the proportion of respondents who endorsed each contributory factor, area of impact, and research priority. Stress (72.1%), racing thoughts (71.3%) and depression (63.6%) were the most endorsed contributory factors. Areas of impact reported most frequently were mood (72.2%) and focus (61.0%). Respondents perceived identifying the causes of insomnia (66.4%) and early detection (66.1%) as important areas of research priority.

Figure 2.

Patient Perspectives on Contributory Factors, Areas of Impact, and Research Priorities

2a depicts the ten most frequently endorsed contributory factors. Not included in the figure were noises (10.5%), caffeine (9.0%), physical activity close to bedtime (3.1%), and other (2.4%). 2b depicts the ten most frequently endorsed areas of impact. Not included in the figure is Other (1.3%). Figure 2c depicts respondent perspectives on the most important areas of study (research priorities). All response options are depicted aside from other (0.5%).

Patient Experience

Six themes and eight sub-themes were identified (Table 3) from responses to the open-ended item. Responses were coded from 72.8% (n=2,194) of the sample. Responses were not coded if the respondent did not write anything or wrote something that was judged non-responsive to the question (e.g., a series of letters that did not form words; a single word unrelated to the question). Text from coded responses is presented in a word cloud (Figure 3). Adolescents perceived high levels of distress associated with their insomnia (Distress). A variety of adjectives and descriptive terms were used to describe insomnia-related distress (e.g., hard, frustrating, defeating, stressful, awful, hellish, worst, crippling, nightmare). Adolescents frequently described insomnia-related Impairment, with three sub-themes: Causes Problems, Makes Things Harder, and Exacerbates. Respondents attributed a variety of problems to their insomnia (Causes Problems). Consistent with survey results, common areas of impairment included problems with focus, school performance, emotion regulation, and relationships (“It effects my grades and ruins my relationships.” ID8). Adolescents also perceived insomnia as making it more difficult to function (Makes Things Harder) in their daily lives and in specific domains, such as academics (“School feels a hundred times harder.” ID748). Many adolescents described insomnia as having an exacerbating effect (Exacerbates), such as worsening a mental health condition, adding to existing high levels of stress, or making a difficult developmental period (i.e., adolescence) even more challenging (“Being a teen is already hard enough.” ID986).

Table 3.

Adolescent Experiences with Insomnia

Theme	Sub-theme	Sample Quotations
Distress (n=532)		It is extremely stressful. [ID 418] It’s not something anyone gets used to, it’s a living nightmare. [ID 413] It’s physically and emotionally and mentally pains you. [ID 1905] Being a teen with insomnia is crippling. [ID 398]
Impairment	Causes Problems (n=644)	Has a huge effect on social life, skills, emotions. [ID54] It really really messes with school. You’re too tired to do homework and too tired to pay attention in class. [ID 185] It’s ruining my life and my family. [ID 249] I was late so often that I had to be put on probation for missing school. [ID 410] It drains my energy and makes me have headaches. [ID 1422]
	Makes things Harder (n=389)	Everyday things that used to be simply annoying become impossible. [ID9] Insomnia makes it difficult to do even the simplest of tasks. [ID 317] It’s difficult to find joy in activities or do good at school with this issue. It’s hard to focus on things as well. [ID 2841] School feels a hundred times harder. [ID 748]
	Exacerbates other Difficulties (n=59)	I feel like it adds to my anxiety and depression. [ID 313] It’s a physical and mental strain to an already stressful time in life. [ID 167] Life is hard and it’s even harder when you’re unable to sleep regularly. [ID 1514] We’re under so much pressure all the time. When you add insomnia is just keeps building up until we crash. [ID 2113]
Invalidation	Minimization (n=247)	It’s a lot harder and more complicated than adults think. [ID 47] It’s the worst because you’re a teen. It’s your fault you have it and no one’s going to sympathize with you. [ID 262] People often don’t take us seriously. They say it’s just hormones and we will get over it. They need to understand it’s an actual problem and it can effect all aspects of our life. [ID 363] None of the adults in my life truly understand how much of a struggle it is to pull myself out of bed every day. [ID 398]
	Misplaced Blame (n=103)	People say that we are up too late on or phones but in all actuality I get in my phone because I lay there not able to sleep. [ID 60] We actually have this condition. We don’t just spend all night on our phones like our parents seem to think. [ID 208] It’s hard, and most adults just say “just go to sleep” or “it’s because you’re always on that phone/electronic. [ID 1775]
	False Attribution (n=71)	When we are tired and unmotivated during the day it associated with laziness and unwillingness. [ID 160] That I’m not just trying to rebel. Insomnia is an actual problem that a lot of adults and people of authority seem to overlook or brush off as just “being a rebellious teenager.” I’m not looking for attention. If anything, the only thing I’m looking for is good sleep so I can function like a normal human being. [ID 497] That we’re not lazy or grumpy. [ID 610] We’re seen as not respectful if we fall asleep in class. [ID 2524] We are not lazy, we are constantly tired and anxious. [ID 1900]
Helplessness and Hopelessness (n=300)		It's not our fault we can't sleep, just that our brains aren't letting us. [ID 5] We try and fix it, but we can never figure it out. [ID 119] Sometimes someone may try something for a while and when it doesn't work they just give up and feel like there's no point in trying because they'll never get the Insomnia to go away. [ID 151] It’s like there’s no escape. [ID 40]
Overburdened (n=113)		School, be it tests, grades, or the worry of disappointing people, can contribute a lot to not being able to sleep at night. [ID 901] Too much is expected of us. [ID 611] It’s important to know that school causes insomnia due to the stressful environment it creates such as drama, school work, and fitting in your own personal life. [ID 2120] We are expected to do so much when we have no energy. The pressures are massive. [ID 915] It sucks, man. I take care of my mom and do all the chores. I also need to pass my classes and maintain my extra curricular (theatre). So much is expected of me and I’m always worrying. [ID 1682]
Wishes and Solutions	Awareness, Education, and Screening (n=61)	I think more education on insomnia and its causes and symptoms is needed. [ID19] I don’t think insomnia gets enough attention… The thing that needs to happen is more focus on insomnia as a medical condition with treatment available and outreach to teens and preteens so they can get the information and help they need. [ID 2589]
	Validation (n=65)	It shouldn't be ignored or overlooked because a lot of us are struggling on the inside and are too embarrassed/anxious to fully speak about it. [ID 834] Parents and teacher think we're making an excuse, but we aren't. We don't like it just as much as you don't like it. So instead of yelling, maybe try helping us. [ID 2877] Parents need to stop telling their kids they are being dramatic. [ID 37] Be gentle with us, we are struggling and we are not lazy. We need you to be patient. [ID 1258]

Invalidation was a common experience identified by respondents (Invalidation), and was divided into three sub-themes: Minimization, Misplaced Blame, and False Attribution. Adolescents sometimes described that their insomnia was not taken seriously, most often by parents or teachers, but sometimes also by health care providers or peers (Minimization; “People tend to dismiss the problems we are having and act as if they are not a big deal.” ID55). Some respondents felt unfairly blamed for their insomnia (Misplaced Blame), or that their insomnia was incorrectly attributed to a specific behavior, most often nighttime electronics usage or staying up late (“People are convinced you’re just staying up late by choice.” ID521). Another form of invalidation occurred when respondents felt unfairly perceived as having a negative character trait, such as laziness or irritability, due to their insomnia (False Attribution; “We aren’t lazy; we’re just tired.” ID18).

A fourth theme was feelings of Helplessness and Hopelessness. This included feeling little or no control over one’s sleep (“We try to sleep but we simply can’t.” ID45), pessimism about potential treatments or solutions (“You can try so many different things and none of them help.” ID162), and/or hopelessness about their insomnia (“It’s like there’s no escape.” ID40). Another theme pertaining to insomnia-related emotional experiences was feeling Overburdened, with multiple responsibilities and associated stress contributing to insomnia. Some adolescents emphasized a high volume of responsibilities (e.g., homework; jobs) as playing a role in their insomnia, whereas other adolescents focused on the stress or pressure associated with those responsibilities (“So much is expected of me and I’m always worrying.” ID1682.)

Adolescents also offered strategies for addressing problems with teen insomnia (Wishes and Solutions), with two sub-themes reflecting the most common types of solutions. Increased validation from others was the most frequently identified solution (Validation), consistent with the experience of invalidation. Responses ranged from a more general wish for validation (“It shouldn’t be ignored or overlooked.” ID834) to specific advice for adults (“You should never, EVER, tell teenagers that this is just a phase, or it is easy to just go to sleep. It will just degrade them.” ID2944). A second sub-theme focused on the need for Awareness, Education, and Screening around insomnia in adolescents (“Being able to spread awareness and how common it is, so people don’t feel alone.” ID540).

Discussion

This study is the first to describe the perspectives of adolescents with insomnia in a large, international sample. Study findings from over 3,000 adolescents living in the US, UK, Canada, Australia, and New Zealand highlight common experiences of adolescents with insomnia.

A noteworthy finding is the degree of distress and impairment endorsed by adolescents with insomnia. Adolescents ranked distress and/or impairment associated with insomnia as their most important concern impacting a variety of relevant domains. While fatigue and/or sleepiness might be considered primary areas of impairment, more adolescents in this study identified difficulties with mood, focus, and pain as the greatest areas of insomnia impairment. Recognition of the scope of insomnia impairment beyond fatigue/sleepiness is critical for providers evaluating insomnia in adolescent patients. Moreover, other commonly endorsed areas of impairment were associated with disorders other than insomnia (e.g., mood with depression), which may contribute to under-detection of insomnia in adolescents. Although this study was cross-sectional, other studies have identified bidirectional relationships between insomnia and mood disorders (Roberts & Duong, 2013), chronic pain (Badawy et al., 2019), and ADHD (Lunsford-Avery et al., 2016), highlighting the need to screen for insomnia when evaluating these other prevalent conditions, and vice versa. Of note, co-morbid anxiety and/or depression were reported by more than half of the sample, likely reflecting the high degree of bidirectionality between insomnia and internalizing difficulties. Finally, clinical trials of insomnia treatment should also consider these adolescent-identified areas of greatest impairment as potential treatment outcomes. This high degree of distress and impairment was not found in studies of adolescents without insomnia (e.g., Quante at al., 2019), and seems to be an important factor differentiating adolescents with insomnia.

Adolescents identified stress, especially related to school and other responsibilities and racing thoughts among the most common contributors to insomnia. Indeed, the term “school” is prominent in the word cloud (Figure 3), suggesting high frequency of use in open-ended responses, which could reflect school as both a source of stress and as one of the areas that insomnia impacts. Adolescents are known to have high stress levels (APA, 2008) and school stress has been shown to be an independent predictor of insomnia (Roberts, Roberts, & Duong, 2008). It is important to consider both the amount of stress adolescents experience, as well as individual differences in how adolescents respond to stress. In adults, perceived lack of control of stress has been identified as a risk factor for insomnia (Harvey et al., 2014; Jarrin et al., 2014). Interventions or policies that reduce stress (e.g., reduced homework load) and/or promote resilience in managing stress (e.g., targeted interventions; see Baños et al., 2017) could also reduce adolescent insomnia prevalence and impact.

Of note, adolescents did not perceive sleep hygiene-related factors as being strong contributors to insomnia. Although nighttime screen use has been shown to have adverse effects on sleep in adolescents (e.g., longer sleep onset latency; delayed bedtime; Hale & Guan, 2015; Harbard et al., 2016) providers should not automatically assume that adolescent screen use is a primary causal factor for insomnia, or that reducing screen use alone is an adequate solution. This is consistent with findings from a sleep health promotion study, in which parents and providers, but not adolescents, identified electronic screen use as a contributor to poor sleep (Levenson et al., 2022). In this sample, only 18% endorsed screen use as a primary contributory factor, and many perceived the recommendation to reduce screens as invalidating. Instead, when speaking to adolescents about their insomnia, providers should acknowledge that screen use may be only one of many potential contributory factors.

Not feeling tired was endorsed by 39% of the sample, which could be attributed to a mismatch between a normative circadian delay and the early bedtime required to obtain sufficient sleep considering early school start times. Relatedly, adolescents (36%) endorsed alternate activities (wanting to do other things when it is time to sleep) as a common contributor. The tendency to engage in other activities instead of trying to sleep could be related to not feeling tired at bedtime, feeling overburdened (e.g., not having time to relax or engage in preferred activities during the day), anxiety or stress associated with lying awake in bed, and/or difficulty with consistent habits around sleep (e.g., adhering to a set bedtime). Adolescents identified a few other salient contributory factors, including feeling unsafe (21.6% of respondents). As it is not clear to what extent feeling unsafe pertains to perceived verses actual risk of harm, this area warrants further investigation. Although 11.9% of respondents identified pain as a contributory factor, almost half (49.7%) of respondents identified pain as an insomnia-related impairment. Given research demonstrating bidirectional associations between sleep and pain, with potentially shared neurobiological mechanisms (Badawy et al., 2019), clinicians should screen for pain symptoms in patients who present with insomnia, and for insomnia in patients who present with pain.

Adolescents called for prioritization of research on insomnia causes, awareness, and detection, with treatment research (behavioral or pharmacologic) endorsed less frequently. Relatedly, in our qualitative findings, adolescents expressed a desire for better societal awareness of insomnia as well as validation of the seriousness and complexity of insomnia. Many respondents described a perceived lack of control over their sleep and insomnia symptoms, as well as the perception that treatments would not be helpful. Given that there are efficacious non-pharmacologic insomnia treatments for adolescents (Meltzer et al., 2021), it will be important to promote treatment awareness, access, and engagement. At the same time, there is a need to better disseminate these treatments to outpatient behavioral health providers, as very few clinicians are trained in pediatric behavioral sleep medicine (Thomas et al., 2016).

Strengths and Limitations

This study included a large sample of adolescents from five countries, but findings likely do not reflect global experiences of adolescents with insomnia. The sample only included five English-speaking countries, respondents were predominantly from the US, and more than two-thirds of the sample identified as non-Hispanic White. The sample was predominantly female (77.0%), although this is consistent with the higher prevalence of insomnia in adolescent females vs. males (Zhang et al., 2016).

The use of survey methodology, compared to other methodologies such as semi-structured interviews, limited the depth of the data, though did allow for a large sample size which reflects greater breadth of adolescent experiences. As with all surveys, the data is heavily influenced by aspects of the survey items. For example, in asking respondents to identify up to three responses for key constructs (contributory factors, areas of impact, research priorities), we may have missed important information both regarding the hierarchy of responses (e.g., which was the most important) and additional responses that were also important (e.g., the 4^th most problematic area of impact).

The use of social media recruitment offered both advantages and disadvantages. We were able to recruit a large sample in a cost-effective manner across a broad geographic area. Further, social media recruitment, particularly when participation is anonymous, can reach participants who would not typically participate in research (Stern et al., 2020), including those who are not receiving care for their symptoms. Given our aim of informing patient-centered care, a large and diverse sample is important to capture a broad range of experiences. The use of just one social media platform may have limited generalizability, as Facebook users may not be representative of the broader adolescent population. Another limitation is that we were not able to verify participant characteristics or insomnia diagnoses. Although almost all adolescents in this study met criteria for insomnia based on symptom report, most respondents had not been previously evaluated and diagnosed with an insomnia disorder by a healthcare provider. Nonetheless, insomnia is diagnosed primarily by patient reports of clinical symptoms, supporting our assumption that our sample consisted primarily of adolescents experiencing insomnia. Further, as no incentives were offered for study completion, there was no clear motive for participants to misrepresent themselves or their experiences.

Some respondents may have met criteria for insomnia but had a symptom profile more consistent with another sleep disorder, such as DSWPD. However, those reporting a symptom profile consistent with insomnia and/or DSWPD represented only a minority of the sample (8.3%).

Summary

This study is the first to examine perspectives and experiences of adolescents with self-identified insomnia. Adolescents reported high insomnia-related distress and hopelessness, perceiving their insomnia as both difficult to control and as a major source of impairment. Taken with feelings of invalidation and overburden, findings point to a crucial need for enhanced patient-centeredness in adolescent insomnia research and care. Particularly given the ongoing youth behavioral health crisis (Benton et al., 2022), proactive insomnia screening and a focus on instilling validation, hope, and distress-tolerance into clinical encounters and interventions for adolescent insomnia are crucial next steps in preventing the adverse outcomes of this highly prevalent disorder.

STROBE Statement—checklist of items that should be included in reports of observational studies

	Item No.	Recommendation	Page No.	Relevant text from manuscript
Title and abstract	1	(a) Indicate the study’s design with a commonly used term in the title or the abstract	1	Survey
		(b) Provide in the abstract an informative and balanced summary of what was done and what was found	2
Introduction
Background/rationale	2	Explain the scientific background and rationale for the investigation being reported	3
Objectives	3	State specific objectives, including any prespecified hypotheses	3
Methods
Study design	4	Present key elements of study design early in the paper	4
Setting	5	Describe the setting, locations, and relevant dates, including periods of recruitment, exposure, follow-up, and data collection	4
Participants	6	(a) Cohort study—Give the eligibility criteria, and the sources and methods of selection of participants. Describe methods of follow-up Case-control study—Give the eligibility criteria, and the sources and methods of case ascertainment and control selection. Give the rationale for the choice of cases and controls Cross-sectional study—Give the eligibility criteria, and the sources and methods of selection of participants	4
		(b) Cohort study—For matched studies, give matching criteria and number of exposed and unexposed Case-control study—For matched studies, give matching criteria and the number of controls per case
Variables	7	Clearly define all outcomes, exposures, predictors, potential confounders, and effect modifiers. Give diagnostic criteria, if applicable	4-6
Data sources/measurement	8*	For each variable of interest, give sources of data and details of methods of assessment (measurement). Describe comparability of assessment methods if there is more than one group	4-6
Bias	9	Describe any efforts to address potential sources of bias	7	Double-coding
Study size	10	Explain how the study size was arrived at	7 and Figure 1
Quantitative variables	11	Explain how quantitative variables were handled in the analyses. If applicable, describe which groupings were chosen and why	6-7
Statistical methods	12	(a) Describe all statistical methods, including those used to control for confounding	6-7
		(b) Describe any methods used to examine subgroups and interactions	NA
		(c) Explain how missing data were addressed	NA
		(d) Cohort study—If applicable, explain how loss to follow-up was addressed Case-control study—If applicable, explain how matching of cases and controls was addressed Cross-sectional study—If applicable, describe analytical methods taking account of sampling strategy	NA
		(e) Describe any sensitivity analyses	8
Results
Participants	13*	(a) Report numbers of individuals at each stage of study—eg numbers potentially eligible, examined for eligibility, confirmed eligible, included in the study, completing follow-up, and analysed	7 & Figure 1
		(b) Give reasons for non-participation at each stage	7 & Figure 1
		(c) Consider use of a flow diagram	Figure 1
Descriptive data	14*	(a) Give characteristics of study participants (eg demographic, clinical, social) and information on exposures and potential confounders	8 & Tables 1-2
		(b) Indicate number of participants with missing data for each variable of interest	Tables 1-3
		(c) Cohort study—Summarise follow-up time (eg, average and total amount)	NA
Outcome data	15*	Cohort study—Report numbers of outcome events or summary measures over time	NA
		Case-control study—Report numbers in each exposure category, or summary measures of exposure	NA
		Cross-sectional study—Report numbers of outcome events or summary measures	Tables 1-3
Main results	16	(a) Give unadjusted estimates and, if applicable, confounder-adjusted estimates and their precision (eg, 95% confidence interval). Make clear which confounders were adjusted for and why they were included	NA
		(b) Report category boundaries when continuous variables were categorized	5-7
		(c) If relevant, consider translating estimates of relative risk into absolute risk for a meaningful time period	NA
Other analyses	17	Report other analyses done—eg analyses of subgroups and interactions, and sensitivity analyses	NA
Discussion
Key results	18	Summarise key results with reference to study objectives	11
Limitations	19	Discuss limitations of the study, taking into account sources of potential bias or imprecision. Discuss both direction and magnitude of any potential bias	13-14
Interpretation	20	Give a cautious overall interpretation of results considering objectives, limitations, multiplicity of analyses, results from similar studies, and other relevant evidence	14
Generalisability	21	Discuss the generalisability (external validity) of the study results	13-14
Other information
Funding	22	Give the source of funding and the role of the funders for the present study and, if applicable, for the original study on which the present article is based	Title

^*Give information separately for cases and controls in case-control studies and, if applicable, for exposed and unexposed groups in cohort and cross-sectional studies.

Note: An Explanation and Elaboration article discusses each checklist item and gives methodological background and published examples of transparent reporting. The STROBE checklist is best used in conjunction with this article (freely available on the Web sites of PLoS Medicine at http://www.plosmedicine.org/, Annals of Internal Medicine at http://www.annals.org/, and Epidemiology at http://www.epidem.com/). Information on the STROBE Initiative is available at www.strobe-statement.org

Abbreviations:

ADHD

Attention Deficit and Hyperactivity Disorders

CI

Confidence interval

ID

Identification

SD

Standard Deviation

US

United States

UK

United Kingdom

Appendix A: Survey Items

Sociodemographic Information

How old are you in years?

What is your gender? Male ∣ Female ∣ Other

What is your race/ethnicity? Check all that apply.

White ∣ Black ∣ Asian ∣ American Indian or Alaska Native ∣ Native Hawaiian or Pacific Islander ∣ Hispanic ∣ Do not wish to disclose ∣ Other

Has a healthcare provider (e.g., doctor, nurse, counselor) ever told you that you have any of the following health conditions? Please check all that apply.

Obstructive sleep apnea ∣ Restless legs syndrome ∣ Allergies ∣ Asthma ∣ GERD / Reflux ∣ Overweight or obese ∣ Heart disease ∣ High blood pressure ∣ Thyroid problems ∣ Sickle cell disease ∣ Eczema / atopic dermatitis ∣ Diabetes ∣ Autism ∣ Depression ∣ ADHD ∣ Anxiety ∣ Chronic pain (e.g., headache; stomach; nerves) ∣ None of these ∣ Other

Insomnia Symptoms

Which of these insomnia symptoms do you experience? Check all that apply.

Difficulty falling asleep at bedtime ∣ Difficulty staying asleep ∣ Waking up too early (i.e., before your alarm goes off) ∣ Difficulty sleeping without a parent, sibling, or pet in the room ∣ Other

If other selected:

Which other insomnia symptom(s) do you experience?

For insomnia symptom(s) endorsed above:

About how often do you have each of these insomnia symptoms?

I don’t usually have this symptom ∣ 1 or 2 nights a week ∣ 3 or 4 nights a week ∣ 5 or 6 nights a week ∣ Every night

Please rate how much of a problem each of these insomnia symptoms is for you.

Not a problem ∣ A small problem ∣ A medium problem ∣ A big problem

How long has insomnia been a problem for you?

I do not have a problem with insomnia ∣ Less than 3 months ∣ 3-6 months ∣ 6-12 months ∣ 1-2 years ∣ 3-5 years ∣ 5 or more years

Contributory Factors

What factors do you think contribute most to your insomnia? Choose up to 3.

Worries/stress ∣ Racing thoughts (i.e., having a hard time shutting down your brain) ∣ Not feeling tired at bedtime ∣ Pain ∣ Depression or feeling sad ∣ Not having a regular bedtime and wake time ∣ Not enough physical activity during the day ∣ Physical activity too close to bedtime ∣ Caffeine (e.g., coffee; soda) too close to bedtime ∣ Feeling unsafe at night ∣ Loud noises ∣ Bright light (i.e., electronic screens) too close to bedtime ∣ Wanting to do other things when it’s time to sleep ∣ Other

If other selected:

What other factor(s) contribute to your insomnia?

Areas of Impact

What are the three problems that occur because of your insomnia that are the most difficult for you?

Choose up to 3.

Fatigue (feeling physically tired but not able to sleep) ∣ Sleepiness (falling asleep without meaning to) ∣ Hard to focus or remember things ∣ Arguments with friends or family ∣ Mood problems (e.g., feeling irritable, getting upset easily) ∣ Behavior problems (e.g., feeling hyperactive, impulsive, aggressive) ∣ Don’t feel like doing anything ∣ Worry about not being able to sleep or about getting enough sleep ∣ Worrying in general ∣ Mistakes or accidents ∣ Headaches or body pains ∣ Stomach upset ∣ Other physical health problem ∣ Other

If other selected:

What is the other problem(s) that occurs because of your insomnia that is difficult for you?

Research Priorities

What areas of insomnia do you think are most important for scientists to study? Choose up to 3.

Causes of insomnia ∣ Diagnosing teens earlier (i.e., when symptoms start) ∣ Figuring out which adult medications are safe for teens ∣ Developing new medications for insomnia in teens ∣ Developing new (non-medication) treatments for insomnia in teens ∣ Developing new ways to deliver treatments, such as on-line ∣ Figuring out how more kids can participate in (non-medication) insomnia treatment ∣ Teaching the public about healthy sleep and preventing insomnia ∣ Other

If other selected:

What else do you think scientists should study about insomnia?

Overall Experience

What else do you think it is important for us to know about what it is like to be a teen with insomnia?

Appendix B: Key Findings by Gender, Age, and Race/Ethnicity

By Gender

Patient-reported gender: male (n=519), female (n=2320), other (n=125), not reported (n=50)

Symptoms and Frequency

Male

Insomnia Symptom, n(%)	Number of Participants (n=519)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	498 (95.9)	Nightly (249 [50.0])
Sleep maintenance difficulty	293 (56.4)	3-4x/week (86 [29.4])
Early morning awakening	265 (51.0)	3-4x/week (84 [31.7])
Sleep association	77 (14.8)	Nightly (38 [49.4])
Other	26 (5.0)	Nightly (13 [52.0])

Female

Insomnia Symptom, n(%)	Number of Participants (n=2,320)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	2,188 (94.3)	Nightly (1,121 [51.3])
Sleep maintenance difficulty	1,586 (68.3)	Nightly (533 [33.6]
Early morning awakening	1,305 (56.3)	3-4x/week (310 [23.8])
Sleep association	572 (24.6)	Nightly (247 [43.2])
Other	117 (5.0)	Nightly (70 [61.9])

Other

Insomnia Symptom, n(%)	Number of Participants (n=125)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	121 (96.8)	Nightly (75 [61.9])
Sleep maintenance difficulty	83 (66.4)	3-4x/week (26 [20.8]
Early morning awakening	73 (58.4)	1-2x/week (19 [26.0])
Sleep association	42 (33.6)	Nightly (26 [61.9])
Other	12 (9.6)	Nightly (5 [45.5])

Contributory Factors

Contributory Factors	Frequency of Endorsement n(%)
	Gender
	Male (n=521)	Female (n=2,333)	Other (n=126)
Stress	332 (64.0)	1,721 (74.2)	86 (68.8)
Racing Thoughts	357 (68.8)	1,673 (72.1)	84 (67.2)
Depression	310 (59.7)	1,497 (64.5)	90 (72.0)
Not Tired	233 (44.7)	876 (37.5)	49 (38.9)
Alternate Activities	202 (38.9)	818 (35.3)	51 (40.8)
Feeling Unsafe	76 (14.6)	518 (22.3)	44 (35.2)
Irregular Sleep/Wake Schedule	104 (20.0)	475 (20.5)	27 (21.6)
Light from Screens	92 (17.7)	424 (18.3)	21 (16.8)
Lack of Physical Activity	80 (15.4)	411 (17.7)	27 (21.6)
Pain	55 (10.6)	276 (11.9)	24 (19.2)
Noises	28 (5.4)	268 (11.6)	18 (14.4)
Caffeine	52 (10.0)	204 (8.8)	9 (7.2)
Physical Activity Close to Bedtime	11 (2.1)	80 (3.4)	3 (2.4)
Other	10 (1.9)	57 (2.5)	5 (4.0)

Areas of Impact

Areas of Impact	Frequency of Endorsement n(%)
	Gender
	Male (n=519)	Female (n=2,320)	Other (n=125)
Mood	344 (66.3)	1,708 (73.6)	33 (26.4)
Focus	308 (59.3)	1,411 (60.8)	88 (70.4)
Pain	196 (37.8)	1,218 (52.5)	61 (48.8)
Worries	203 (39.1)	1,106 (47.7)	59 (47.2)
Sleepiness	208 (40.1)	891 (38.4)	52 (41.6)
Fatigue	408 (78.6)	1,855 (80.0)	107 (85.6)
Behavior	194 (37.4)	854 (36.8)	56 (44.8)
Anhedonia	290 (55.9)	1,387 (59.8)	82 (65.6)
Sleep-specific Worries	192 (37.0)	868 (37.4)	37 (29.6)
Interpersonal	135 (26.0)	769 (33.1)	36 (28.8)
Mistakes	142 (27.4)	526 (22.7)	46 (36.8)
Other	7 (1.3)	28 (1.2)	2 (1.6)

Research Priorities

Research Priorities	Frequency of Endorsement n(%)
	Gender
	Male (n=521)	Female (n=2,333)	Other (n=126)
Causes	342 (65.9)	1,548 (66.7)	84 (67.2)
Early Detection	333 (64.2)	1,551 (66.9)	85 (68.0)
Public Education	236 (45.5)	1,162 (50.1)	62 (49.6)
Non-Pharm Treatments	232 (44.7)	1,138 (49.1)	62 (49.6)
Clinical Trials: Teen Meds	242 (46.4)	1,013 (43.4)	51 (40.5)
Clinical Trials: Adult Meds	181 (34.7)	746 (32.0)	48 (38.1)
Treatment Access	138 (26.6)	712 (30.7)	36 (28.8)
Treatment Delivery	92 (17.7)	474 (20.4)	24 (19.2)

By Age

Patient-reported age: Younger (13-15 years; n=849), Older (16-18 years; n=2076)

Missing (n=89)

Symptoms and Frequency

Older Adolescents

Insomnia Symptom n(%)	Number of Participants (n=2,076)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	1,963 (94.5)	Nightly (998 [50.8])
Sleep maintenance difficulty	1,436 (69.2)	Nightly (466 [32.5]
Early morning awakening	1,178 (55.4)	3-4x/week (368 [31.3])
Sleep association	486 (23.4)	Nightly (230 [47.4])
Other	106 (5.1)	Nightly (63 [60.5])

Younger adolescents

Insomnia Symptom n(%)	Number of Participants (n=849)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	807 (95.1)	Nightly (429 [53.2])
Sleep maintenance difficulty	501 (66.1)	Nightly (168 [33.5])
Early morning awakening	443 (52.2)	3-4x/week (134 [30.2])
Sleep association	199 (23.4)	Nightly (76 [38.2])
Other	49 (5.7)	Nightly (26 [57.8])

Contributory Factors

Contributory Factors	Frequency of Endorsement n(%)
	Age Group
	Younger Adolescents (13-15 years) n=849	Older Adolescents (16-18 years) n=2,076
Stress	606 (71.4)	1,503 (72.4)
Racing Thoughts	590 (69.5)	1,493 (71.9)
Depression	543 (64.0)	1,328 (64.0)
Not Tired	364 (42.6)	774 (37.1)
Alternate Activities	309 (36.4)	750 (36.1)
Feeling Unsafe	219 (25.8)	410 (19.7)
Irregular Sleep/Wake Schedule	159 (18.7)	436 (21.0)
Light from Screens	175 (20.6)	353 (17.0)
Lack of Physical Activity	160 (18.8)	348 (16.8)
Pain	112 (13.2)	235 (11.3)
Noises	115 (13.5)	191 (9.2)
Caffeine	73 (8.6)	186 (9.0)
Physical Activity Close to Bedtime	31 (3.7)	60 (2.9)
Other	17 (2.0)	53 (2.6)

Areas of Impact

Areas of Impact	Frequency of Endorsement n(%)
	Age Group
	Younger Adolescents (13-15 years) n=849	Older Adolescents (16-18 years) n=2,076
Mood	242 (28.5)	570 (27.5)
Focus	536 (63.1)	1,245 (60.0)
Pain	425 (50.1)	1,030 (49.6)
Worries	421 (49.6)	928 (44.7)
Sleepiness	334 (39.3)	798 (38.4)
Fatigue	657 (77.4)	1,680 (80.9)
Behavior	348 (41.0)	739 (35.6)
Anhedonia	504 (59.4)	1227 (59.1)
Sleep-specific Worries	328 (38.6)	750 (36.1)
Interpersonal	323 (38.0)	602 (29.0)
Mistakes	230 (27.1)	471 (22.7)
Other	16 (1.9)	22 (1.1)

Research Priorities

Research Priorities	Frequency of Endorsement n(%)
	Age Group
	Younger Adolescents (13-15 years) n=849	Older Adolescents (16-18 years) n=2,076
Causes	562 (66.2)	1,386 (66.8)
Early Detection	585 (68.9)	1,356 (65.3)
Public Education	432 (50.9)	1,009 (48.6)
Non-Pharm Treatments	394 (46.4)	1,020 (49.1)
Clinical Trials: Teen Meds	370 (43.3)	917 (44.0)
Clinical Trials: Adult Meds	285 (33.3)	674 (32.3)
Treatment Access	260 (30.6)	615 (29.6)
Treatment Delivery	176 (20.7)	406 (19.6)

By Race/Ethnicity

Patient-reported race/ethnicity: Black / African American (n=131), Hispanic (n=218), Multiracial (n=293),

White (n=2134)

Note: Data for other racial/ethnic groups are not presented due to small sample sizes but is available upon request to the corresponding author.

Symptoms and Frequency

Black / African American

Insomnia Symptom, n(%)	Number of Participants (n=131)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	126 (96.2)	Nightly (67 [53.2])
Sleep maintenance difficulty	85 (64.9)	Nightly (28 [32.9]
Early morning awakening	80 (61.0)	3-4x/week (24 [30.0])
Sleep association	22 (16.8)	Nightly (7 [31.8])
Other	3 (2.3)	NA*

^*Frequency data only available for two participants, who selected Nightly (n=1) and 5-6x/week (n=1).

Hispanic

Insomnia Symptom, n(%)	Number of Participants (n=218)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	209 (95.9)	Nightly (97 [46.4])
Sleep maintenance difficulty	133 (61.0)	3-4x/week (40 [30.0]
Early morning awakening	122 (55.9)	3-4x/week (37 [30.3])
Sleep association	50 (22.9)	Nightly (30 [60.0])
Other	12 (5.5)	Nightly (4 [33.3])

Multiracial

Insomnia Symptom, n(%)	Number of Participants (n=293)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	268 (91.5)	Nightly (143 [53.3])
Sleep maintenance difficulty	207 (70.6)	Nightly (68 [32.8]
Early morning awakening	175 (59.7)	Nightly (49 [28.0])
Sleep association	83 (28.3)	Nightly (42 [50.6])
Other	22 (7.5)	Nightly (12 [54.5)

White

Insomnia Symptom, n(%)	Number of Participants (n=2,134)	Most Common Frequency of Symptoms (n[%])
Sleep onset difficulty	2,012 (94.3)	Nightly (1032 [51.3])
Sleep maintenance difficulty	1,419 (66.5)	Nightly (475 [33.5]
Early morning awakening	1,165 (55.4)	3-4x/week (370 [31.8])
Sleep association	494 (23.1)	Nightly (211 [42.8])
Other	113 (7.0)	Nightly (67 [59.3])

Contributory Factors

Contributory Factors	Frequency of Endorsement n(%)
	Race/Ethnicity
	Black/African American (n=133)	Hispanic (n=218)	Multiracial (n=283)	White (n=2,144)
Stress	80 (61.1)	169 (77.5)	194 (68.6)	1551 (72.7)
Racing Thoughts	97 (74.0)	158 (72.5)	219 (77.4)	1506 (70.6)
Depression	73 (55.7)	144 (66.1)	178 (62.9)	1772 (64.1)
Not Tired	67 (50.4)	78 (35.8)	116 (41.0)	817 (38.1)
Alternate Activities	58 (44.3)	73 (33.5)	121 (42.8)	732 (34.3)
Feeling Unsafe	23 (17.6)	43 (19.7)	74 (26.1)	456 (21.4)
Irregular Sleep/Wake Schedule	42 (32.1)	50 (22.9)	52 (18.4)	404 (18.9)
Light from Screens	27 (20.6)	39 (17.9)	49 (17.3)	381 (17.9)
Lack of Physical Activity	35 (26.7)	44 (20.2)	50 (17.7)	346 (16.2)
Pain	9 (6.9)	28 (12.8)	36 (12.7)	266 (12.5)
Noises	18 (13.7)	31 (14.2)	36 (12.7)	209 (9.8)
Caffeine	10 (7.6)	13 (6.0)	23 (8.1)	200 (9.4)
Physical Activity Close to Bedtime	8 (6.1)	8 (3.7)	10 (3.5)	62 (2.9)
Other	2 (1.5)	3 (1.4)	11 (3.9)	54 (2.5)

Areas of Impact

Areas of Impact	Frequency of Endorsement n(%)
	Race/Ethnicity Group
	Black/African American (n=131)	Hispanic (n=218)	Multiracial (n=283)	White (n=2,134)
Mood	92 (70.2)	164 (75.2)	204 (72.1)	1,551 (72.7)
Focus	83 (63.4)	142 (65.1)	163 (57.6)	1,290 (60.4)
Pain	57 (43.5)	121 (55.5)	136 (48.1)	1,068 (50.0)
Worries	45 (34.4)	100 (45.9)	128 (45.2)	1,000 (46.9)
Sleepiness	60 (45.8)	91 (41.7)	116 (41.0)	802 (37.6)
Fatigue	97 (74.0)	182 (83.5)	232 (82.0)	1,706 (79.9)
Behavior	774 (36.3)	94 (43.1)	117 (41.3)	1,360 (63.7)
Anhedonia	79 (60.3)	146 (67.0)	168 (59.4)	1,239 (58.1)
Sleep-specific Worries	53 (40.5)	88 (40.4)	109 (38.5)	756 (35.4)
Interpersonal	38 (29.0)	84 (38.5)	94 (33.2)	666 (31.2)
Mistakes	21 (16.0)	58 (26.6)	83 (29.3)	503 (23.6)
Other	0 (0.0)	3 (1.4)	6 (2.1)	24 (1.1)

Research Priorities

Research Priorities	Frequency of Endorsement n(%)
	Race/Ethnicity Group
	Black/African American (n=133)	Hispanic (n=218)	Multiracial (n=283)	White (n=2,144)
Causes	88 (67.2)	151 (69.3)	189 (66.8)	716 (33.6)
Early Detection	95 (72.5)	156 (71.6)	178 (62.9)	1.407 (65.9)
Public Education	67 (51.1)	116 (53.2)	144 (50.9)	1,029 (48.2)
Non-Pharm Treatments	60 (45.8)	102 (46.8)	134 (47.3)	1.023 (47.9)
Clinical Trials: Teen Meds	51 (38.3)	96 (44.0)	120 (42.4)	960 (44.8)
Clinical Trials: Adult Meds	33 (24.8)	60 (27.5)	99 (35.0)	713 (33.3)
Treatment Access	41 (31.3)	73 (33.5)	96 (33.9)	610 (28.6)
Treatment Delivery	22 (16.8)	43 (19.7)	60 (21.2)	425 (19.9)