Adolescent and Young Adult Perspectives on Quality and Value in Health Care

Abstract

Objective:

To describe adolescent and young adult (AYA) perspectives on defining quality and value in health care and to gain understanding of their knowledge of value-based payment.

Methods:

A text message-based survey was sent to a convenience sample of AYAs aged 14 to 24 in 2019. Participants were asked 4 open-ended questions: 1) how they would define “good health care,” 2) what factors to consider in rating doctors, 3) whose opinions should matter most when rating doctors, and 4) the best ways to collect AYA opinions on doctors, and one yes/no question on their awareness of value-based payment. Analyses included descriptive demographic statistics and an inductive thematic approach with multivariable models comparing adolescent (14–18) and young adult (19–24) responses.

Results:

Response rate was 61.0% (782/1283). Most participants were White (63.3%), female (53.3%), and adolescents (55.6%). Common themes from the first 2 questions included accessibility (specifically affordability), coverage benefits, and care experience (including compassion, respect, and clinical competence). Young adults more commonly mentioned affordability than adolescents (54.4% vs 43.3%, P = .001) and more commonly felt their opinion should matter more than their parents when rating doctors (80.6% vs 62.0%, P < .001). Only 21.0% of AYAs were familiar with the potential value-based link between physician payment and care quality.

Conclusions:

When considering quality and value in health care, AYAs expressed their desired agency in rating the quality of their care and clinicians. AYAs’ perspectives on health care quality, including the importance of care accessibility and affordability, should be considered when designing youth-centered care delivery and value-based payment models.

US health care systems are increasingly transforming from fee-for-service models toward payment structures that hold systems accountable for value.¹ With value defined as health care quality and patient experience over cost, value-based care aims to improve quality and experience while lowering costs.² Examples of value-based payment models include accountable care organizations and bundled payments, where payments are linked to health outcomes and quality of care.¹ The transformation to value has occurred predominantly in adult health care, with fewer models focused on children and adolescents.² New initiatives, such as the federally-funded Integrated Care for Kids model, have created opportunities to accelerate the move toward value-based care and payment for children.³

As value-based payments expand,⁴ adolescents and young adults (AYAs) are unique populations deserving of attention. During the transition from childhood to adolescence and young adulthood, AYAs gradually gain autonomy in managing their health and health care.⁵ The shifting autonomy and shared decision-making between AYAs and their parents are dynamic and sometimes specific to certain care situations.⁶ Parents may focus more on routine preventive or chronic care visits than AYA-specific confidential concerns,^7,8 and these AYA-specific clinical areas may warrant special consideration in value-based health care transformation for AYAs.

Quality measure selection is a critical component of value-based payment models, with increasing focus on measures that reflect patient values.⁹ The Consumer Assessment of Healthcare Providers and Systems, for example, measures patient experience with clinicians, including the degree to which they understand the patient’s medical history, show respect, spend enough time, and give easily understood information, as well as whether they would recommend the physician to family and friends.¹⁰ While some of these measures are applicable to AYA populations, a paucity of patient-reported outcomes exist that specifically address AYA values and perspectives.¹¹ Whether and how these patient experience measures are linked to payments in value-based models is a developing area.¹² For example, AYA patient satisfaction and ratings of clinicians could be considered for value-based payment, insurance network inclusion, and reimbursement under value-based contracts.

Quality measures that assess patient experience are needed to design and implement more patient-centered care models rooted in understanding what patients, specifically AYAs, want and need.¹³ A prior systematic review identified that AYAs with cancer wanted to have their voices heard, to be involved in decision-making, and to develop trust with their doctors.¹⁴ Providing opportunities to build agency among AYAs in health care both helps optimize health outcomes and is critical for AYA development.¹⁵ In the era of value-based care models, few studies have captured AYA-specific insights on quality or patient-reported outcome measures.¹⁶ We sought to describe AYA perspectives on defining the quality component of value in health care and to gain understanding of their knowledge of value-based payment.

METHODS

Study Overview

We distributed an electronic survey in August 2019 to AYAs aged 14 to 24 across the United States through MyVoice, a text message-based research platform. MyVoice was developed in 2016–17 as a method to engage AYAs in research through text messaging, a medium that is youth-friendly, easily implemented, readily accessible to low-income communities, and informal and approachable, even for sensitive questions.¹⁷

Study Sample

AYAs were recruited to MyVoice in person, through community and youth-centered events, and online through Facebook and Instagram advertisements, which allowed for targeted recruitment of AYAs from low-income families, those of minority backgrounds, and those not enrolled in school.¹⁸ Eligible participants had to be able to read and communicate in English and have access to a phone that could receive and respond to text messages. AYAs provided consent or assent online prior to enrolling and provided demographic information through an online form (gender, race, ZIP code, education level, parent/guardian education level, and socioeconomic status). Parental consent was not required due to minimal risk. Convenience sampling was used in MyVoice, where recruitment targets were based on weighted samples of the 2016 American Community Survey (ACS), a yearly census of the US population.¹⁸

Study Procedures and Outcomes

Questions were developed by the research team through an iterative process with 5 rounds of feedback from AYAs within the targeted age range who were affiliated with 2 universities. Participants received 4 open-ended questions about quality in health care and one yes/no question about the potential value-based link between quality and cost: 1) “How would you define ‘good health care’ for people your age?” 2) “If you were rating your doctor, what factors would you consider?” 3) “Whose opinion should matter most in rating how well your doctor cares for you: yours, parents, insurance companies, others? Why?” 4) “What would be the best 2 ways to collect opinions on your doctor (in-person, phone, text, email, online, paper survey, etc.)?” and 5) “Doctors are sometimes paid based on the quality of care they provide. Did you know that?” Despite many AYAs being treated by nonphysician clinicians, the term “doctor” was used rather than “provider” or “clinician” based on pilot feedback to avoid confusion. These questions were sent sequentially so that participants needed to submit a response before receiving the next question; fewer than 10% of responses were missing for any question. Modest incentives of $1 for each completed survey were provided for AYA participation on the MyVoice platform.

Covariates were selected a priori based on existing literature and included age, race, gender, ethnicity, US region, and prior or current qualification for free or reduced-price lunch as a proxy for low socioeconomic status.¹⁹

Analysis

Responses for the first 2 questions were reviewed by 4 researchers using an inductive thematic approach to develop a preliminary codebook of major themes and concepts with definitions and examples for each. Three researchers triple-coded 50 responses per question to assess the codebook’s validity and refine its contents. Participant responses could be coded for multiple concepts.

After finalizing the codebook, 2 researchers double-coded 15% of responses for questions 1 and 2. Cohen’s kappa was calculated for each code to test for interrater reliability, with all Cohen’s kappa values above 0.80. The prevalence of each theme and code was calculated and stratified into 2 age groups: adolescents (age 14–18) and young adults (age 19–24).

Responses to the remaining 3 questions were categorized and summarized with descriptive statistics. For question 3 on whose opinion should matter when rating a doctor, responses were categorized as their own (ie, the AYA), their parents’, both their own and their parents’, the opinion of insurance companies, others, or all opinions. For question 4 on the 2 best methods to collect AYA opinions, responses were categorized as online, through text, in-person, email, paper survey, phone, all, and other methods. Responses to question 5 on awareness of quality-based payment were categorized as yes or no/unsure. Comparisons between the frequency of AYA responses were tested with multivariable logistic regressions that controlled for the following potential confounders: gender, race, ethnicity, region, and socioeconomic status. All analyses were conducted using Stata 16.1 (College Station, TX), and P values <.05 were considered statistically significant.

Ethical Approval

This study was reviewed and approved as exempt by the Duke Institutional Review Board.

RESULTS

The overall response rate was 61.0%, as 782 AYAs responded out of a sample of 1283. Among the 782 respondents (Table 1), 55.6% were adolescents (ages 14–18). Most participants identified as female (53.3%), while 38.0% were male, and 8.6% another gender (eg, transgender). A majority identified as White (63.3%), with 13.8% Asian and 9.5% Black race, as well as 12.8% as Hispanic or Latino ethnicity. Approximately one-third (36.7%) had qualified or currently qualified for free or reduced-price lunch.

Table 1.

Participant Characteristics (N = 782)

Sociodemographics	Count (%)
Age group
Adolescent (14–18)	435 (55.6%)
Young adult (19–24)	347 (44.4%)
Gender
Female	417 (53.3%)
Male	297 (38.0%)
Transgender	32 (4.1%)
Nonbinary	24 (3.1%)
Other	11 (1.4%)
Race
White or Caucasian	495 (63.3%)
Asian or Pacific Islander	108 (13.8%)
Black or African American	74 (9.5%)
Mixed race	75 (9.6%)
Other	29 (3.7%)
Ethnicity
Hispanic/Latino	100 (12.8%)
Low socioeconomic status
Yes	287 (36.7%)
No	490 (62.7%)
Region
Midwest	320 (40.9%)
South	218 (27.9%)
West	133 (17.0%)
Northeast	103 (13.2%)

Three themes were identified in AYA responses to the 2 questions on defining good health care and rating clinicians: accessibility, coverage benefits, and care experience. Accessibility referred to responses that mentioned the affordability or availability of care. Coverage benefits included AYA statements describing what types of coverage they preferred, which were categorized as preventive or comprehensive care coverage, dental or vision services, acute or emergency care, mental health services, reproductive health services, medications, and other. Care experience included AYA responses on how they desired to experience their health care and interactions with their doctors, including clinicians demonstrating compassion and respect, exhibiting clinical competence, and providing informative communication.

Question 1: Defining “Good Health Care”

In response to the question, “how would you define ‘good health care’ for people your age?,” over half of AYAs mentioned accessibility (59.7%; Table 2), with the majority of these responses referencing affordability (eg, “low deductible”). Of responses mentioning coverage benefits (48.1%), AYAs most often mentioned preventive care or comprehensive coverage (eg, “comprehensive holistic health care” and “coverage that spans the most common health issues”), dental/vision services, acute/emergency care (eg, “coverage for emergencies or unexpected injuries”), and mental health (eg, “easy access to...addiction therapy”). Some respondents also raised the importance of various elements within the care experience (21.0%), most often referencing compassionate and respectful care (eg, “I want the provider to care enough to listen and believe what I’m telling them. I want them to see me as a person and do what’s in my best interest.” and “... doctors not treating us like small children who don’t know anything about our own bodies, but also not expecting us to know everything like a fully educated adult.”).

Table 2.

Question 1: How Adolescents and Young Adults (AYAs) Defined “Good Healthcare”

Topic	All AYAs (n = 705)	Adolescents (n = 383)	Young Adults (YAs) (n = 322)	aOR Ref: YAs (95% CI)	Illustrative Quotes
Accessibility	421 (59.7%)	211 (55.1%)	210 (65.2%)	0.63** (0.45, 0.88)
Affordability	341	166	175	0.57** (0.41, 0.79)	“Ideally health care would be free or at least affordable”
Population-based	54	30	24	0.95 (0.52, 1.74)	“I’m for Medicare for all...” “Easily accessible healthcare for not just the elite”
Availability	46	20	26	0.69 (0.36, 1.32)	“being able to see the doctor whenever you need”
Other Accessibility	43	25	18	1.66 (0.84, 3.28)	“Access to all medicine and health care they may need” “accessible, even/especially without parental permission/knowledge”
Coverage benefits	339 (48.1%)	182 (47.5%)	157 (48.8%)	1.02 (0.74, 1.41)
Preventive Care/Comprehensive Coverage	189	98	91	0.89 (0.62, 1.28)	“I think for my age, it’s about prevention and keeping things at bay before they become big issues” “Access to...complete mental and physical health services.”
Dental/Vision	61	30	31	0.80 (0.46, 1.41)	“Good health care for people my age...covers the cost of vision appointments, glasses, dental”
Acute/Emergency Care	60	35	25	1.09 (0.61, 1.95)	“Good health care...covers more accidents than diseases, since younger people are more prone to injuring themselves accidentally than having a serious, life threatening disease”
Mental Health	57	37	20	1.62 (0.88, 2.98)	“People my age tend to need mental health counseling and therapists.”
Reproductive Health	44	26	18	1.16 (0.59, 2.26)	“proper sex ed, access to contraceptive.” “Covering transgender and gender affirming surgeries.”
Medications	37	23	14	1.61 (0.78, 3.32)	“Covers all my prescriptions and medical supplies”
Other Coverage	33	12	21	0.61 (0.28, 1.34)	“Easier access to specialists” “An insurance plan that covers most medical costs”
Care Experience	147 (20.9%)	71 (18.5%)	76 (23.6%)	0.69 (0.47, 1.02)
Compassion/Respect	74	31	43	0.56* (0.33, 0.94)	“Judgment free, mindful of different types of people” “I believe that good health care [sic] for people my age is having care that is confidential...and culturally sensitive.”
Clinical Competence	37	16	21	0.47* (0.23, 0.97)	“...know how to screen for common threats to health for people my age” “...having good quality care from medical personnel.”
Informative Communication	20	12	8	1.29 (0.50, 3.37)	“Essentially receiving information in a way that students can understand.” “a doctor that takes time to listen and explain things.” “... educating them on staying healthy and safe during their teenage age”
Other Care Experience	35	21	14	1.46 (0.67, 3.20)	“Efficient, holistic, all encompassing” “troublesome symptoms being followed up on” “‘Good health care’ is health care that allows flexibility for us” “Good health Care...should also be fast and efficient.”

aOR indicates adjusted odds ratio from multivariable regression controlling for gender, race, ethnicity, socioeconomic status, and US region, and where young adult is the reference group; 95% CI, 95% confidence interval.

^*, p < .05

^**, p < .01

^***, p < .001 for comparisons by row between adolescent and young adult responses.

Multivariable analyses revealed that adolescents were less likely than young adults to mention affordability (adjusted odds ratio [aOR] 0.57; 95% confidence interval [CI] 0.41–0.79) and compassion/respect (aOR 0.56, 95% CI, 0.33–0.94). African American AYAs were less likely than White AYAs to mention accessibility (P < .001) or affordability (P < .001; Supplemental Table). Males were less likely than females to mention reproductive health (P < .01) or medications (P < .05) as coverage benefits.

Question 2: Rating Doctors

When asked about what factors they would consider when rating their doctor, almost all AYAs mentioned their care experience (94.9%; Table 3). Within responses on care experience, AYAs most frequently mentioned the importance of compassion and respect, highlighting attributes they desired (e.g., “willingness to listen,” “takes their time with me,” “trust,” “nonjudgmental,” “how comfortable they make me”) and those they wanted to avoid (eg, “bigoted toward my identity,” “fatphobic”). AYAs also referenced clinical competence, such as a clinician’s educational background and credentials, their public ratings or reviews, and “their expertise” and “accuracy of diagnoses.” The theme of accessibility was also raised among 28.9% of respondents, most frequently mentioning the importance of a doctor’s availability (eg, “appointment availability,” “closeness to home”). Fewer adolescents than young adults mentioned compassion/respect (aOR 0.62, 95% CI, 0.43–0.88).

Table 3.

Question 2: Factors Adolescents and Young Adults (AYAs) Would Consider in Rating Their Doctors

Topic	All AYAs (n = 705)	Adolescents (n = 393)	Young Adults (YAs) (n = 312	aOR Ref: YAs (95% CI)	Illustrative Quotes
Care experience	669 (94.9%)	368 (93.6%)	301 (96.5%)	0.48 (0.22, 1.02)
Compassion/Respect	486	254	232	0.62** (0.43, 0.88)	“ability to listen/empathize” “How personable they were and how comfortable they made me feel at my visit and how well they listened to me”
Clinical Competence	405	219	186	0.76 (0.55, 1.06)	“how educated they are on what needs to be done” “good education in the field” “Experience and age and if they have a past of misdiagnosis” “expertise, capability, reliability” “how knowledgeable they seem”
Informative Communication	116	61	55	0.93 (0.60, 1.44)	“ability to explain in simple terms” “How helpful their explanations are, how detailed they are” “their ability to talk me through things” “if they presented me with a multitude of treatment options”
Other Care Experience	27	15	12	1.38 (0.59, 3.23)	“how quickly they authorize my prescription” “I would consider how often the doctor checked in” “time spent with me” “how clean and friendly there [sic] staff was” “Nurses and secretaries” “Time spent actually talking” “Punctuality,...speed, thoroughness”

aOR indicates adjusted odds ratio from multivariable regression controlling for gender, race, ethnicity, socioeconomic status, and US region, and where young adult is the reference group; 95% CI, 95% confidence interval.

^*, p < .05

^**, p < .01

^***, p < .001 for comparisons by row between adolescent and young adult responses.

Question 3: Assessing Health Care Quality and Value

Most AYAs wanted their own opinion (70.4%) to matter most when rating how well their doctor cared for them; adolescents (62.0%) less often responded that way than young adults (80.6%; aOR 0.39, 95% CI, 0.27–0.56, Table 4). For example, one participant stated, “my opinion should matter most because I’m the one who is gonna be receiving the care and I would know what’s best for me.” Fewer AYAs believed that their parents’ opinion (7.9%) or both theirs and their parents’ opinions (11.6%) should matter most. More adolescents than young adults expressed these sentiments (parents most: aOR 4.12, 95% CI, 1.99–8.51; both: aOR 2.60, 95% CI, 1.52–4.45).

Table 4.

Adolescent and Young Adult (AYA) Perspectives on Assessing Quality and Value in Health Care

Response	All AYAs N (%)	Adolescents N (%)	Young Adults (YAs) N (%)	aOR Ref: YAs (95% CI)
Q3. Whose opinion should matter most in rating how well your doctor cares for you: yours, parents, insurance companies, others? Why?
Mine	508/722 (70.4%)	246/397 (62.0%)	262/325 (80.6%)	0.39*** (0.27, 0.56)
Parents	57 (7.9%)	47 (11.8%)	10 (3.1%)	4.12*** (1.99, 8.51)
Both	84 (11.6%)	60 (15.1%)	24 (7.4%)	2.60*** (1.52, 4.45)
Insurance	24 (3.3%)	13 (3.3%)	11 (3.4%)	0.79 (0.33, 1.89)
Others	55 (7.6%)	23 (5.8%)	32 (9.8%)	0.48* (0.26, 0.89)
All	25 (3.5%)	17 (4.3%)	8 (2.5%)	2.37 (0.95, 5.91)
Q4. What would be the best 2 ways to collect your opinion on your doctor? (in-person, phone, text, email, online, paper survey, etc.)
Online	328/714 (45.9%)	158/389 (40.6%)	170/325 (52.3%)	0.58** (0.42, 0.80)
Text	282 (39.5%)	157 (40.4%)	125 (38.5%)	1.03 (0.74, 1.43)
In-person	247 (34.6%)	151 (38.8%)	96 (29.5%)	1.71** (1.22, 2.40)
Email	190 (26.6%)	85 (21.9%)	105 (32.3%)	0.59** (0.41, 0.85)
Paper Survey	101 (14.1%)	62 (15.9%)	39 (12.0%)	1.43 (0.90, 2.28)
Phone	100 (14.0%)	66 (17.0%)	34 (10.5%)	1.51 (0.94, 2.41)
All and Other Methods	59 (8.3%)	35 (9.0%)	24 (7.4%)	1.17 (0.66, 2.10)
Q5. Doctors are sometimes paid based on the quality of care they provide. Did you know that?
Yes	149/710 (21.0%)	81/391 (20.7%)	68/319 (21.3%)	0.89 (0.60, 1.32)

aOR indicates adjusted odds ratio from multivariable regression controlling for gender, race, ethnicity, socioeconomic status, and US region, and where young adult is the reference group; 95% CI, 95% confidence interval.

^*, p < .05

^**, p < .01

^***, p < .001 for comparisons by row between adolescent and young adult responses.

Question 4: Preferred Survey Medium

AYA preferences for how to collect their opinions about their clinician ratings included online (45.9%), text (39.5%), and in person (34.6%, Table 4). A lower proportion of adolescents preferred online data collection (52.3% vs 40.6%; aOR 0.58, 95% CI, 0.42–0.80) and e-mail (32.3% vs 21.9%; aOR 0.59, 95% CI, 0.41–0.85) for rating doctors, while more adolescents than young adults preferred rating their doctors in person (38.8% vs 29.5%; aOR 1.71, 95% CI, 1.22–2.40). “Online” data collection was most commonly clarified as “online survey.” African American AYAs were less likely than White AYAs to prefer online data collection (P < .01).

Question 5: Value-Based Payment Awareness

A minority of AYAs (21.0%) responded that they were aware of the potential value-based approach in which doctors are sometimes paid based on their quality of care, with no difference between age groups (Table 4). One respondent commented that they “thought [doctors] got paid the same no matter the quality of care,” while another identified it as “value-based purchasing.”

DISCUSSION

Our sample of AYAs were clear in wanting the opportunity to make their voices heard in rating the quality of their care and their clinicians. Care affordability and accessibility were the most common ways in which AYAs defined good health care, particularly among young adults, which is consistent with prior literature.²⁰ When rating their doctors, the care experience was critical, including how AYAs were treated and how they assessed the clinical competence of their clinicians. These AYA insights on quality and value parallel what adult patients report,^12,13,21 suggesting early formation of these view-points.

Most AYAs preferred rating their own clinicians rather than having their parents do so and likely desired more agency. If AYAs’ ratings are tied to clinical payment rather than their parent’s ratings, AYA agency is potentially more important as health care moves toward value. However, adolescents are rarely asked directly for their own ratings, currently. Instead, parents or caregivers serve as the respondents for patient-reported outcomes like patient satisfaction.¹² Adolescents and parents are both stakeholders in adolescent health and seek health information from clinicians during a visit,²¹ and both should rate the quality of their care. Their perspectives on care quality may contradict: a parent may rate nonconfidential, parent-driven care as high quality, while the adolescent may have desired confidential care and rate quality lower. Parent perspectives alone cannot be presumed to capture AYA perspectives.²² Because AYAs, like adults, expressed a preference for providing their quality ratings electronically, health care systems should prioritize developing electronic platforms to capture these patient-reported measures.²³ These electronic ratings completed by AYAs could be directly incorporated into value-based models as one of the parameters with which the quality of care is assessed.

In assessing health care value, AYAs, especially young adults and African Americans, highlighted costs and affordability.²⁴ Young adults more often mentioned cost of care than adolescents as they transition to more financial independence. Clinicians can prepare adolescents for this growing independence by initiating conversations on financial literacy and self-efficacy in navigating the health care system. These discussions are increasingly important as patients, young and old, have rising out-of-pocket costs and surprisingly expensive bills through high-deductible plans and out-of-network care.^25,26 Young adults are sensitive to increased care costs, such as when adding 10 Euro co-pays resulted in lower primary care visits by Swedish young adults.²⁷ AYAs have also responded to lower out-of-pocket expenses, such as rising rates of contraceptive use when out-of-pocket expenses for these medications were mostly eliminated by Medicaid expansion under the Affordable Care Act.²⁸ The out-of-pocket costs relative for high-value care (eg, Chlamydia screening and contraception) should be low to none for AYAs in value-based models.

Cost of care is influenced by coverage benefits, and AYAs explicitly mentioned several services that are typically excluded from insurance plans, such as dental, vision, and mental health coverage.²⁹ Better health insurance literacy can help AYAs anticipate their costs and coverage benefits, while also ensuring that care is accessible at times and locations convenient for AYAs.²⁹ Medic-aid expansion, health insurance exchanges, and essential benefit requirements have improved insurance and benefit coverage for AYAs. Uninsured rates, however, increased significantly from 2018 to 2019 for 14-year-olds, 16 to 21-year-olds, and 24 to 26-year-olds, with the highest uninsured rate for 26-year-olds, at 18.3% in 2019.³⁰ These rates may worsen with COVID-related unemployment and efforts to eliminate the Affordable Care Act. Interestingly, AYAs in this study expressed sentiments of wanting broader care access when defining good health care (eg, “easily accessible health care for not just the elite”). With increasing focus on equity in value-based payment, there are opportunities to select performance measures to promote more equitable access to care and ensure the reporting of performance and cost by equity strata (eg, race/ethnicity and rural/urban).³¹

AYAs identified comfort with their doctor’s approach to care and the content of that care as factors defining high-quality health care. AYAs focused on concepts related to dignity and respect, access to confidential services,^20,32 and doctors’ sensitivity to stigmatized topics, such as gender, obesity, and mental health.³³ Building relationships between AYAs and their clinicians can be a protective factor for well-being and is predictive of continuity of care; prior studies have demonstrated that AYAs carefully assess health care providers’ sense of comfort and expertise in working with AYAs.²² AYAs also valued external indications of their doctors’ clinical competence, such as physician ratings and educational credentials. Popular platforms like Yelp and Health-grades.com allow patients (both AYAs and others) to publicly rate clinicians and care experiences, though these ratings often do not correlate with other validated quality measures, including patient satisfaction.^34,35 AYAs provided explicit areas for physicians to focus on to improve the care experience and their subsequent ratings: compassion, respect, trust, listening, lack of judgment, taking time, and helping patients feel comfortable. Clinicians can provide a nonjudgmental, confidential environment and use normative language (eg, “Are you noticing that your friends are starting to smoke or drink?” or “Sometimes my patients tell me that they have unprotected sex with multiple partners. Tell me about your sexual history”) to invite AYA trust and promote transparency.^36,37

This study’s limitations included data collection through text messages and sample selection. Four of the 5 questions were open-ended, which allowed a fuller expression of AYA perspectives than a multiple-choice survey. Data collection through text message likely improved accessibility and response rates for AYAs, but responses may have been less in-depth than an online survey or interview. While there was no character limit, AYAs may have typed shorter messages via text, and no follow-up questions could be asked to clarify responses. The free-response format also imparted a level of inference in analysis since it was assumed that the absence of a theme in a response equated to a respondent not valuing it when it is possible the respondent simply did not think of that theme when texting a response. Future analyses could build upon these novel insights by directly asking about findings from this study. Participation was restricted to a volunteer sample of AYAs with access to phones with texting, though over 95% of adolescents in the United States have access to a smartphone.³⁸ While several socio-demographic variables were included, insurance coverage was unavailable. Finally, while the overall sample was recruited with a goal of weighting to the 2016 ACS, those who responded to our study’s questions were more likely to be Asian/Pacific Islander (13.8% vs 7.1%) and less likely to be Hispanic (12.8% vs 22.2%), White (63.3% vs 71.9%), or Black (9.5% vs 20.1%), though multiracial was a separate category for our data versus categorized together with single races in the ACS data. Midwest participants were purposely oversampled by the MyVoice team (40.9% vs 21.2% per 2016 ACS).¹⁸ The perspectives of over 700 AYA participants may not be generalizable to all groups of AYAs, as there is heterogeneity in navigating health care systems, but the breadth of the sample and identified themes are likely to capture many of the most important AYA perspectives nationally.

AYAs expressed an understanding and strong preferences on important aspects of their health care, including quality and cost, that should be considered when designing value-based payment models for young people. AYA responses in this study all preceded the rapid increase in telehealth availability during the COVID-19 pandemic yet still highlighted the importance of technology while providing confidential and nonjudgmental care even pre-pandemic.³⁹ The rise in telehealth services covered by insurance allows physicians an opportunity to tailor care to AYA preferences through increased electronic means that are confidential, accessible, and affordable. The pandemic has also accelerated improvements to electronic health platforms, such as patient portals, that could be used to collect patient reported outcomes and patient satisfaction surveys directly from AYAs. A health care system committed to adopting multiple strategies to meet the dynamic needs and expectations of AYAs will assure that they have access to high quality care. Such strategies can range from easily accessible and affordable care to clinician training to ensure compassionate and competent care for AYAs. Offering care that is of high quality and value to AYAs can set the foundation for nurturing them into better and more engaged health care consumers, particularly as we move to value-based care—ultimately improving their health trajectories over a lifetime.

What’s New.

In this cross-sectional study of 782 adolescents and young adults, value was defined as having their voices heard in rating clinicians, health care being affordable and accessible, and the care experience being respectful and competent.