Development and Initial Testing of a Health-Related Independence Measure for Autistic Young Adults as Reported by Caregivers

Abstract

Background:

Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents' independent management of health care and life needs. Lack of HCT services can result in negative outcomes such as unmet needs, overmedication, and loss of decision-making authority. Autistic young adults (AYA) are half as likely to receive HCT services compared with special needs young adults. Furthermore, there are no HCT readiness measures that address the unique needs of AYA.

Methods:

This study used a mixed-methods approach to develop and test a holistic caregiver-reported measure of HCT readiness for AYA Health-Related Independence (HRI). The phases used to create and test the HRI measure included: (1) construct and question topic development through qualitative data collection with AYA and caregivers; (2) question development with clinicians and caregivers; and (3) initial question testing utilizing cognitive interviews and pretesting of the instrument with caregivers.

Results:

Measure constructs were developed based on qualitative findings from AYA (n = 27) and caregivers (n = 39). The researchers identified 12 themes related to HRI from the data. Next, questions were developed for each theme by caregivers (n = 5) and clinicians (n = 25). Finally, questions and the survey format were tested using caregiver feedback in the form of cognitive interviews (n = 15) and pretests (n = 21). The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions.

Conclusion:

The development of the HRI measure was a comprehensive and iterative process. This article highlights the measurement development process and its potential impact on AYA, caregivers, and clinicians.

Lay summary

Why was this study done?

Health care transition services help youth keep their health insurance, transition to an adult doctor smoothly, and promote independence. To date, there is no health care transition intervention for autistic young adults. Few studies have examined how to prepare autistic young adults to manage their health and self-care needs and the transition to an adult model of care. We wanted to fill in these gaps by creating a measure of health care transition readiness for autistic young adults.

What was the purpose of this study?

The purpose of the study was to develop the Health-Related Independence measure based on autistic young adult and caregiver input. We define Health-Related Independence as a young adult's ability to manage their health, healthcare, and safety needs. We also wanted to examine the measure to make sure it was easy to read, made sense, and was easy to answer.

What did the researchers do?

We used a mixed-methods approach to develop and test the Health-Related Independence measure. There were three parts to the study: (1) we conducted individual interviews with autistic young adults and focus groups with caregivers to understand what topics should be included in the measure, (2) clinicians and caregivers then used those topics to create specific survey questions, (3) we conducted interviews and online pretest of the measure with caregivers.

What were the results of the study?

The autistic young adults and caregivers identified twelve topics/themes to include in the Health-Related Independence Measure. Caregiver feedback helped make the measure shorter and easier to understand and complete. The final version of the caregiver-reported HRI measure included 58 questions.

What do these findings add to what was already known?

We learned that young adults and caregivers have a broad understanding of health-related independence such as safety and sexuality/relationship knowledge. There weren't any measures to capture these ideas. This study created an important new measure that can be used in healthcare clinics, schools, and at home.

What are potential weaknesses in the study?

This study aimed to work with autistic young adults to develop the Health-Related Independence measure, but due to funding and study limitations, we only included young adults in the 1^st phase of the study. Caregivers were used as proxy reporters in phases 2 and 3. Not including autistic young adults in phases 2 and 3 was a weakness of the study. Future research should aim to fully incorporate young adults into the research process. Their views should inform the development of the qualitative interview guides and all portions of the study.

How will these findings help autistic adults now or in the future?

The Health-Related Independence measure can help caregivers and health care providers identify areas in which the autistic young adults are successful and areas of needed improvement to assist in the successful transition to adult care and adult life. The authors are currently working on a study proposal to validate the Health-Related Independence measure as a self-assessment tool for young adults to take themselves.

Introduction

Transitioning into adulthood is an intense time of growth and change in all aspects of a young adult's life. Autistic young adults (AYA) experience the same life changes but face additional challenges.^1,2 Social-communication impairments, executive functioning difficulty, and the importance of consistency can affect an AYA transition in numerous ways including difficulty in adjusting to new environments and expectations in college or work, maintaining current and developing new friendships, and implementing self-determination skills as they age.³ Without appropriate supports and transition planning, these changes and new expectations can feel insurmountable to many AYA and their caregivers.³ While transition services are an underresearched area in general, much research has documented the lack of available services and the need for additional supports in all aspects of the AYA life.^4–6

Health care transition (HCT) services planning and research were identified as a critical need by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine in 2002 and 2018.^7,8 HCT is the provision of structured transition services that help adolescents prepare for an adult model of care, ensure a smooth transition to adult care, and promote adolescents' independent management of health, health care, and adult life.^7–9 For young adults in the United States, these services are an important tool to support health insurance retention. Over half of autistic people have co-occurring conditions increasing their dependence on the health care system throughout the life course.^10,11 Although medical conditions are often not the young adult's first concern, their continued connection with the health care system and the need for coordinated care makes HCT services critical for AYA.

Many health, utilization, financial, and quality of care outcomes have been shown to improve when HCT services connect and support the transition from a child-based service system to adult-based care. Access to HCT services for special needs young adults has been shown to improve access to care, appropriate service utilization, patient satisfaction, decision-making skills, health outcomes, and reduce cost burdens to families.^12–16 Disturbingly, less than 40% of special needs young adults and less than a quarter of AYA receive HCT services.^17–19 Similarly, multiple studies noted the lack of HCT research for intellectual and developmental disabled individuals.^20–23 Two systematic reviews found that AYA were not included in any of HCT service-related intervention studies that met their eligibility criteria.^16,20

Current HCT readiness assessments focus on a limited set of skills including provider communication, medication management, and appointment keeping.^24–26 While the current set of skills are important for all young adults, research has documented additional challenges AYA face when becoming independent related to their health and health care needs.^27–30 Multiple studies have shown that transition support related to mental health conditions is a significant need for AYA but is not included in current HCT measures or interventions.^{25,27,30–32} Similarly, general, community, and sexual safety issues have been identified as health concerns by AYA, caregivers, and the clinical and research community.^25,27,31 The Interagency Autism Coordinating Committee (IACC) strategic plan identified Safety, Victimization, and Interactions with Law Enforcement as one of seven concentration areas of AYA and adult research and service improvements and named “improving safety” as one of three objectives for future research and funding.³¹

AYA have a variety of HCT and medical management needs, but few studies have examined AYA transition to an adult model of care or how to prepare AYA to manage their health and self-care needs.³³ The research team (three research faculty with expertise in qualitative methods, measurement development, and HCT in AYA) identified two aims to address this: (1) obtain a broad understanding of the Health-Related Independence (HRI) needs of AYA and caregivers based on their experiences; (2) develop and test a new caregiver-reported HRI measure based on those AYA and caregiver experiences. We define HRI as a holistic understanding of an AYA ability to manage their health, health care, and safety needs.^19,34–37

The development of self-reported measures for AYA should be a priority in all measurement development studies. Resource and sample limitations did not allow us to develop and test a multiple reporter measure—a caregiver-report and AYA self-report. A separate validation of a young adult self-report version of the HRI is ongoing but is outside the scope of this study. This article describes the development and initial testing of the caregiver-reported HRI measure in partnership with AYA, caregivers, and clinicians.

Methods

The HRI measure was developed using a multistage mixed-methods approach over the course of 3 years. The phases used to create and evaluate the HRI measure included: (1) construct and question topic development with AYA and caregivers; (2) question development and initial question testing with caregivers and clinicians; and (3) initial pretesting of the instrument with caregivers. A separate study was conducted to test the psychometric properties of the caregiver-reported HRI measure (under review).

Phase 1: construct and question topic development

A qualitative methodology was used to develop constructs and question topic areas. Specifically, AYA participated in individual interviews (n = 27) and six focus groups were conducted with caregivers (n = 39).

Recruitment and eligibility

Convenience sampling methods were used to recruit caregivers and young adult participants from three clinics and support service centers located in both urban and rural areas within the United States Midwest. Study flyers were posted throughout autism clinics, and information about the study was sent out to the clinics' listservs. Young adults were eligible to participate if they had an autism spectrum disorder (ASD) diagnosis, were between 16 and 25 years of age, able to communicate in the English language, and reported (self and caregiver) verbal and cognitive ability to answer our questions in an interview setting. Caregivers were eligible to participate in the study if they were a primary caregiver of an AYA between 16 and 25 years of age and were able to communicate in the English language. Although in most cases the AYA and caregiver participated in the interview or focus group, it was not a study requirement.

Data collection method

AYA participated in individual interviews to understand their perspectives and experiences about the transition process generally and HCT more specifically. Previous research has shown that individual interviews elicit in-depth information in a less threatening and more productive manner for AYA than focus groups.^27,38 Youth were allowed to invite an advocate (e.g., caregiver, sibling, another family member, or outside caregiver) to attend the interview process if so desired; however, none chose to bring an advocate. Caregivers participated in one of the six focus groups to assess their perspectives on health-related transitioning and identify additional caregiver and family needs. Focus groups provide rich qualitative data that capture the attitudes and opinions of participants as well as group norms—and are an appropriate method to learn about caregivers' common experiences.³⁹

Individual interview and focus group guides were based on a social-ecological model of readiness for transition to adult care, literature review of HCT service-related studies, and recommendations from our expert panel.⁴⁰ The expert panel included caregivers of AYA, clinicians specialized in treating AYA, and a psychologist with expertise in autism. The interview guides had 12 open-ended questions. The question topics were similar across the individual interviews and focus groups, but the wording varied to meet the goals of each method (e.g., group questions focused on the experiences of caregivers, whereas the interviews honed in on each participant's individual experiences). Question topics included but were not limited to: Has your AYA moved to an adult doctor, What was the experience like? How does your AYA take responsibility for their medical needs? What would independence look like for your AYA?

All participants completed a short survey including demographic questions and an HCT services and transition interest rating scale. The rating scale asked participants to rate, on a Likert scale, their desire for more research and work to be conducted on 11 specific transition topics. For instance, the first question asked, “How important is research on access to health transition resources for autistic young adults?” Topics included those covered on current HCT readiness measures and identified in the current autism literature. Autistic adults and caregivers received $20 cash incentive (in U.S. dollars) for completing the survey and focus group or individual interview participation.

Qualitative data analysis

All interview and focus group data were transcribed verbatim and entered into Atlas.ti for analysis.⁴¹ We analyzed interview and focus group data, separately, using thematic analysis, including initial and axial coding, analytical memos, and organizational matrices and reports.⁴² Two analysts independently generated codes for analysis by consulting the existing literature on HCT and issues of independence in AYA, and inductively, from data provided by the young adults and caregivers themselves.⁴² Initial coding involved reviewing the transcripts line by line to identify how participants' experiences matched the codes. Both coders started the analysis by coding 25% of the data independently and then meeting to calculate the coder agreement. After the first 25% of coding was complete, the agreement was 60%. The coders clarified the code definitions and coded another 25% of data. After the second round of coding, the coder agreement was 90%, so the coders completed the analysis on all the transcripts—meeting weekly to discuss coding, preliminary findings, and analysis memos. The coders then reviewed the initial coding analysis and conducted axial coding to consolidate, clarify, and expand the codes and identify final themes. Finally, a matrix that outlined and defined each of the final themes and a report that listed example quotes under each theme were created to organize the data for the results section.

Quantitative data analysis

Descriptive statistics were used to synthesize the demographic data and rating scale data. The HCT service and transition interest rating scales were averaged for young adults and caregivers separately.

Phase 2: question development

Themes and subthemes identified through Phase 1 were then used to develop constructs and survey questions for the caregiver-reported HRI measure. Two question development sessions were conducted with a mix of caregivers (n = 5) and clinical staff (n = 25).

Question development process

Major themes and the interest rating data drove the identification of topic areas for HRI question development. The research team and expert panel lead the question development process. Caregivers and clinicians from the local Autism Treatment Network Center were recruited to assist in the question development process. The question development process included two 1-hour sessions in which the collaborative team (1) reviewed the qualitative data including themes and quotes within each theme; (2) examined the quantitative HCT services and transition interest area rankings from Phase 1; (3) developed constructs out of themes and ranked data; and (4) created questions addressing each construct using wording from the focus groups and interviews when possible.^43,44 After the initial question development phase was complete, the research staff identified construct topics and questions that were similar to previously validated questions and scales. Questions similar to those already validated were used when appropriate.

Phase 3: initial testing of caregiver-reported HRI

Recruitment and eligibility

To further understand clarity, readability, bias, and ease of use of the HRI measure, we conducted cognitive interviews and pretest of the HRI.⁴⁵ Eligible participants included caregivers of AYA between the ages of 16 and 25 years, who had not participated in any other part of the study. Caregiver recruitment for cognitive interviews and pretesting was similar to the focus group recruitment process used in Phase 1.

Cognitive interview process

Cognitive interviewing is a qualitative method used to assist in item revision and validation of a newly developed scale. This strategy provides a structured method of examining survey items, assessing possible item confusion, evaluating the appropriateness of response options, and assessing the relevance of the item and construct to the participant.^46,47 Eligible caregivers participated in a one-on-one interviewer session. Following the cognitive interview framework, caregivers marked their responses to the HRI questions while thinking aloud about their understanding of and reaction to the questions and the instrument as a whole.⁴⁷ Understanding how the caregivers interpreted questions and how and why they selected each answer choice gave the expert panel insight on questions that were not well understood, worded confusingly, redundant, or need to be removed entirely. Caregivers received a $25 cash incentive (in U.S. dollars) for completing the cognitive interviews.

Cognitive interview analysis

Transcripts of the caregiver interviews and interview notes were used in the analysis. Data were reviewed by two members of the research team and a graduate research assistant to identify item or response problems, the accurate meaning of items and constructs, and overall challenges or issues with measurement questions. Each reviewer documented specific problems as well as groups or similarities within the observed problems or challenges that caregivers reported. The research team then reviewed each member's notes and developed an integrated report of needed revisions and overall challenges.⁴⁷

Pretesting process

Pretesting is a procedure used to evaluate and validate a new measure.⁴⁸ A full-scale pretest of the survey was administered to examine the format and flow, understandability, readability, and feasibility of the caregiver-reported HRI measure. Electronic and hard copy versions of the revised HRI measure were developed. Caregivers could choose which version (electronic or written) of the instrument to complete. A research assistant was available to talk to the participant in-person or online to review the instructions on how to complete the survey and answer questions as needed. After completing the survey, participants completed a short evaluation, either in-person or over the phone. This survey was used to rate their overall experience including issues/challenges with the survey, comprehension, readability, and completeness of questions, feasibility, and logistics. Respondents received a $20 cash incentive (in U.S. dollars) for completing the pretest.

Pretesting analysis

Data from the completed surveys were used to examine the average duration of time needed to complete survey and response choice variability. Response choice variability or ceiling and floor effect were explored by calculating the percentage of participants who choose the highest or lowest answer choices for each item. Follow-up discussion further examined participant's satisfaction and question or concept difficulty. Basic descriptive statistics using Likert-scale questions were used to assess these constructs.

Results

Phase 1

Qualitative results

Twenty-seven AYA completed qualitative interviews and 39 caregivers participated in focus groups. Individual interviews ranged from 30 to 90 minutes, with an average of 60 minutes. Six focus groups were conducted with each lasting around 90 minutes. Young adult participants had a mean age of 19.19 years (standard deviation = 2.83). The majority of AYA were male, Caucasian, and had completed high school by the time of the interview (Table 1). Caregivers were most often female and identified themselves as the mother of an AYA. Although there were slightly different perspectives presented in caregiver and AYA data, overall the two groups' themes aligned more than they differed (Table 2). AYA and caregiver interviews highlighted the following 12 HRI themes: Physical and mental health challenges and communication; Medication or illness management; Appointments/health care visits; Safety; Relationships and sexuality; Finances/financial management; Self-care/health and lifestyle; Health success/self-advocacy, Adulthood/adult health responsibilities; Transition to adult doctor; Resource needs; and Guardianship.

Table 1.

Demographic Characteristics of Autistic Young Adult and Caregiver Samples Used in the Development of the Health-Related Independence Measure

Variable	Phase 1	Phase 1	Phase 2	Phase 2
Variable	AYA	Caregiver	Cognitive interview	Pretest
Number of participants	27	39	15	21
Mean age (SD), years	19.19 (2.83)	^a	50.27 (7.88)	48.8 (11.79)
Males, n (%)	20 (74)	7 (17.9)	2 (13.4)	2 (9.5)
Race, n (%)
White	26 (96)	37 (94.6)	9 (60)	21 (85.7)
Minority	1 (4)	2 (5.4)	6 (40)	0 (0)
Education level, n (%)
In high school/no diploma	4 (14.8)	0 (0)	0 (0)	0 (0)
High school grade	17 (63)	6 (15.4)	1 (6.7)	0 (0)
Some college	6 (22.2)	17 (43.6)	3 (20)	9 (42.9)
Bachelor or higher	0	16 (41)	11 (73.3)	12 (57.1)
AYA behavioral/functional challenges, n (%)^b
Mild	21 (77.7)	17 (43.6)	3 (20)	9 (42.9)
Moderate	6 (22.2)	19 (48.7)	10 (66.6)	8 (38.1)
Severe	0 (0)	3 (7.6)	2 (13.4)	4 (19)
Relationship to AYA, n (%)
Mother		29 (74.4)	13 (86.6)	18 (85.7)
Father		6 (15.4)	2 (13.4)	2 (9.5)
Other		4 (10.3)	0 (0)	1 (4.8)

Age was erroneously not collected on caregiver participants.

AYA reported their own level of challenges when available (column 1). Caregivers reported AYA challenges in all other surveys.

AYA, autistic young adults; SD, standard deviation.

Table 2.

Themes and Measurement Constructs, Description of Theme/Construct, and Exemplar Quotes Included Across Phases of the Measurement Development Process

Phase 1		Phase 2	Phase 3
Youth interview HRI themes	Caregiver HRI themes	Question development	Cognitive interviewing and pretesting
Physical and mental health challenges and communication	Physical and mental health challenges and communication	Knowledge of medical conditions	Knowledge about medical and mental health conditions
Knowledge of health conditions and challenges; seek information about conditions when needed.
“I have severe anxiety and depression.” “I have ovarian cysts problems, so I have to take (medication) all the time” “I Googled autism”
Medication or illness management	Medication or illness management	Medication management	Medication management
Understanding of current medications and ability to take them independently.
“He needs help with medication. He needs reminders” “I take my (medication) on my own. I remind my mom when they need to be refilled.”
Appointments/health care visits	Appointments/health care visits	Health care visits	Health care visits
Managing a health care visit from getting there to talking to the providers to making the next appointment. “I let her (mom) do it. I don't feel like talking to people forever on the phone trying to figure out an appointment date” “He (son) talked to (doctor's name) about his medications.”
Safety	Safety	Safety	Safety
Ability to make safe choices and stay safe and healthy in your environment.
“Stay out of bad parts of town” “Don't reveal personal information to people” “He can't be outside, outside of an area where he can just roam and get lost -he's a runner.”
Relationships/sexuality/intimacy	Relationships/sexuality/intimacy	Sexuality and intimacy	Sexual health
Knowledge of sexual and reproductive health and understanding of abusive and nonabusive relationships.
“Sex education is really important … I hear nothing about sex.” “You should know more about it, recognizing good and bad in relationships.”
Finances/financial management	Financial/financial management/insurance	Health care insurance coverage/financial management	Health care financial management
Understanding of the cost of health care and the U.S. health care system (may apply to other countries as well).
“And I'm preparing to not have health insurance … when I turn 26. I looked at the market place. It will depend on my income, which is not steady.” “My son certainly knows you swipe that card and you can punch it in on a computer and everything like that, but money isn't real” “I try to get him to start paying (for things)”
Self-care/health and lifestyle	Self-care/health and lifestyle	Self-care/health and lifestyle	Self-care
Ability to stay physically and mentally healthy.
“I exercise a lot and I make sure I eat tons and tons of vegetables” “My mom does kind of remind me to brush my teeth.”
Health success/self-advocacy	Health success/self-advocacy	Self-advocacy	Developing goals for the future/self-advocacy
Examples of positive experiences with health care providers and young adult's success in advocating for their own health care needs.
“I really like her [family counselor], yeah, she's become like family, so … because like I can tell her, I'm comfortable with her, I can tell her anything.” “I think she (doctor) did everything she was supposed to because there was times where she'd ask mom to leave the room and say, is there anything you want to tell me?… I think that's really important.”
Adulthood/adult health responsibilities	Adulthood/adult health responsibilities	Adulthood/adult health responsibilities
Responsibility and skills needed to be an adult such as driving, working, and living on own.
“Being self-sufficient, not needing to rely on other people.” “It would be great if he learned to drive.” “Making my own decisions”
Transition to adult doctor	Transition to adult doctor
Descriptions of transition experiences and fears.
“She (paediatrician) may have talked to my mom a little bit about it … and I know my mom has brought it up.” “She's aged out of the paediatrician, and she has not seen a doctor in almost two years.”
Resource needs	Need for resources/suggestions
Identified supports young adults used.
“I really, really liked them [KYEA, the Kansas Youth Empowerment Academy] a lot. They do speeches on how to help people with autism” “We took him to a class, Growing With Your Child, which is a really good class.”
	Guardianship	Guardianship
Challenges understanding and managing guardianship issues.
“It [exploring guardianship] was pretty eye opening. I had no idea a guardianship takes all their rights away.” “I think that's the problem with healthcare is that once they turn 18, the doctors know like the parents legally can't be confided in if the child says no, but they also know they need this parents help”

Blank cells were no longer considered a theme/construct due to lack of data or relevant questions or coverage of topic in another theme/construct.

HRI, Health-Related Independence.

Thematic analysis results

Although it is not possible to review all 12 themes identified in the focus groups and individual interviews, the authors wanted to provide a more in-depth understanding of a few themes and how they were developed into survey questions (Table 3). The exemplar themes covered here will include (1) Safety and (2) Physical and mental health challenges and communication. Young adult and caregiver quotes are provided below and in Table 2. In all cases, pseudonyms replace participants' names.

Table 3.

Phase 1 Thematic Analysis Summary of Highlighted Constructs

			Related question
Safety—Young adult	Staying safe at home	“(I stay safe by) Keep(ing) the doors locked.”“Like, if I'm at home and a doorbell rings, I don't answer it. I'd be feeling like somebody is going to come in.”“(If someone wasn't home) I probably wouldn't cook. (I) don't want to burn the house down.”	My young adult knows who to answer and not answer the door to if [he/she] is home alone.My young adult can safely stay home alone for any length of time.
	Sharing information	“You don't reveal personal information to people … like, your sexuality, your social security number.”“I did have this weird guy send me a friend request on Facebook. I accepted it … there was a picture of me and some girls from school on there. He was like, ‘these look nice. Are these your kids or whatever?’ I'm like, ‘no, you pervert. It says on my Facebook I'm 16. I'm not married.’ So I went on there and de-friended him.”	My young adult knows what is appropriate to disclose on the Internet.
Safety—Caregiver	Relationships and vulnerability	“Too trusting. He trusts everybody. And I always tell him just because they look like a mom and just because they're trusting doesn't mean that they won't take advantage of you”“I think that's a big issue too. For them to be taken advantage of sexually because they are so naive.”	My young adult can distinguish between a romantic relationship and a friendship.My young adult can recognize when [he/she] is in an abusive relationship.My young adult can recognize if [he/she] was the recipient of inappropriate sexual contact.
Communicating concerns and law enforcement	“He gets in a little script, and if you ask, how are you? He'll say, fine. You know, even if he's bleeding”“I don't think that, at least my son, I don't think they understand how to deal with public safety personnel like police and so forth. My son would get pretty—he gets real freaked out about it.”	My young adult can accurately report area of pain or discomfort.My young adult can cooperate with law enforcement if needed.
Physical and mental health challenges and communication—Young adults	Advocate for self and issues	“I've used (describes AASPIRE accommodations report). I took that to the dentist because I didn't like how I was being treated. And I have it on file. And then they sat down with me and talked to me.”“I Googled autism, and it brought it up. And I'm like, holy crap, this is what I have.”	My young adult can seek out information about ASD and his/her other health conditions to learn more about them.My young adult can describe his/her mental health conditions to someone else.
	Seek help	“I just wear the pull-ups for adults … Yep, better than going to a doctor.”“I don't really like talking about it, but I have severe anxiety and depression. And lately, I'm probably going to go see somebody about it.”“She (doctor) was only talking to the—my mom … Because well, I don't know why, but I felt like I was left out. I felt like … Why don't you talk to me.”	My young adult can identify when his/her needs to seek care because his/her is experiencing mental health issues.My young adult can participate in routine health care visits.
Physical and mental health challenges and communication—Caregiver	Knowing diagnosis	“I mean, he got a hold of his sheet of his listed diagnoses. And he literally asked me what each one meant.”“She doesn't know about her own issues, she can't tell somebody about her issues.”	My young adult can describe his/her physical health conditions to someone else.
	Communicate with providers	“It's almost like some physicians need a translator (for our kids), you know, somebody there to be able to talk to.”“He (doctor) was interrogating him over and over and over … finally I said, ‘Listen, he's autistic. He's not going to understand your questions. You can't do that.’ And he continued. It didn't matter … It was terrible.”	My young adult can ask and answer questions of his/her doctor

ASD, autism spectrum disorder.

Safety

In group and interview discussions, both AYA and caregivers described safety as a core health and independence issue, particularly because if the young adult was not able to make safe choices or stay safe in their environment, then their lives would be in jeopardy. In general, caregivers talked about the same themes as young adults but to a less extent and identified other issues that were not readily discussed in young adult interviews (i.e., being overly trusting and vulnerable, relationship risks, and encounters with law enforcement; Table 3).

Both young adults and caregivers described safety issues about being at home or out in the community. AYA examples centered on avoidant and protective behaviors such as “locking doors,” “wouldn't cook (alone),” and not going out without a caregiver. As Gabriel said, “Well, sometimes I don't usually go outside, but I just stay in the house so I won't get hurt.” Similarly, Preston stated, “If I'm at home and the doorbell rings, I don't answer it, I'd feel like somebody (I don't know who) is going to come in.” Caregivers discussed this issue by talking about attempts to protect their young adult and safety practices. As when Sarah said, “He wouldn't shut it off. We have to remind him to shut the oven off after he's baked a pizza. He doesn't remember.” Similarly, Jennifer stated, “We had to lock up everything (in the house)- if it can pole you or cut you or anything. You keep it locked up …. I just don't think (son) ever has any fears.”

Caregivers described safety issues related to their young adults' overall vulnerability. Much of this discussion centered on the young adults' vulnerability in relationships and communication challenges particularly interacting with the designated helpers, such as law enforcement or emergency works (Table 3). Caregivers repeatedly stated that the young adult's overly trusting nature was a major safety concern. As Leslie stated, “He doesn't really predict outcomes very well. And he does think everybody is his friend.” Similarly, Alex said, “He trusts everybody. I always tell him just because they look like a mom … doesn't mean that they won't take advantage of you.” Many of these discussions included concerns for their young adult's sexual safety.

While only a few caregivers described negative experiences young adults had with law enforcement, many said it was something they were worried about. Kevin stated, “I don't think they understand how to deal with public safety personnel like police and so forth. He (son) gets real freaked out about it … Oh yeah, that freaks (son) out if I get pulled over.” Alison agreed, “If they (AYA) have a time where they're processing how to answer, how well does a police officer react to them processing the question.”

Young adults and caregivers also discussed the sharing of personal information as a safety issue. Although sharing information may not immediately seem like a health issue, a lack of knowledge about Internet safety and an understanding of appropriate disclosure could increase one's vulnerability to sexual and financial exploitation. AYA seemed to be cognizant of what information should and should not be shared with others and described experiences of learning how to be more private online. As Kim stated, “I would just accept every single request I would get because I'd be like, yes, another friend.” After a strange encounter on Facebook, she changed this habit. Other participants described their ideas of sensitive information and described avoiding dangerous situations. As Jason said, “If I feel iffy about it, I won't do it.” Michael discussed more general ideas about sharing information and building relationships when stating, “(You need to) be careful about your relationships to people, certain individuals, like criminals … take the time to get to know them slowly.” A caregiver, Tom, shared a similar concern, “He likes to play video games, and he has met people on the video games … when he's downstairs talking on the phone to a guy from Texas that he's met on Clash of Clans. I mean, it's just like oh my gosh.”

Physical and mental health challenges and communication

Young adults and caregivers had many of the same examples and concerns related to the young adult's physical and mental health conditions and the ability to communicate with the health care team. Both groups described the young adult's ability to describe their autism diagnosis and any other conditions they may have. Carol, an AYA, described in detail some reproductive health problems she had and how she had worked with her medical team to address the issues. While some young adults gave examples of resources they used such as the AASPIRE Health care toolkit, other young adults struggled to seek help and talk to providers about their medical conditions (for more information, visit the AASPIRE toolkit, online). In these instances, either the young adult described not feeling comfortable with the provider or having a medical provider who did not allow them to talk and/or treated them “rudely.”

The caregiver's similarly described experiences in which doctors did not address the young adult in a way that they could respond. Caregivers also described “worrying” about not being in the health care visit with the young adult to help provide information and communicate young adult's needs. Caregivers were also concerned about young adult's ability to report problems such as physical pain. They discussed young adults' “high tolerance for pain” and communication challenges. The caregiver's concerns were escalated by the idea of the young adult having to see a doctor who they had not seen before and/or not having the caregiver present to advocate for them.

Quantitative results

HCT services and transition interest ratings

AYA and caregiver interest rating scales were used to get a better understanding of the group's priority areas and utilize some quantitative data in the construct and question development process. The interest rating scale asked both AYA and caregivers the level of importance in research and work of different topics related to HCT services and transition more generally. Interest rating percentages for AYA and caregiver data (Table 4) were presented to caregivers and clinicians during the question development meetings.

Table 4.

Health Care Transition Interest Rating Scale for Young Adults and Caregivers

	Mean	Standard deviation
Young adult interest topics
Importance of research on safety concerns	4.35	1.017
Importance of research on necessary information for one to gain health-related independence	4.27	1.041
Importance of research on how expectations/goals and plans to reach goals develop	4.19	1.059
Importance of research on self-management skills	4.19	1.265
Importance of research on how caregivers can promote health-related independence	4.11	1.032
Importance of research on access to health care transition resources	4.04	0.999
Importance of research on the personal meaning of adulthood/independence	4.04	1.216
Importance of research on family and self-expectations for the future	4	1.166
Importance of research on needs for sex education	4	1.356
Importance of research on the personal meaning of health-related independence	3.96	1.148
Importance of research on motivation to transition to adult health care provider	3.92	1.017
Caregiver interest topics
Importance of research on safety concerns	4.77	0.504
Importance of research on how expectations/goals and plans to reach goals develop	4.76	0.511
Importance of research on self-management skills	4.63	0.615
Importance of research on the personal meaning of adulthood/independence	4.62	0.561
Importance of research on necessary information for one to gain health-related independence	4.53	0.629
Importance of research on needs for sex education	4.5	0.777
Importance of research on family and self-expectations for the future	4.48	0.749
Importance of research on access to health care transition resources	4.42	0.672
Importance of research on how caregivers can promote health-related independence	4.34	0.721
Importance of research on the personal meaning of health-related independence	4.31	0.761
Importance of research on motivation to transition to adult health care provider	3.68	0.945

Both AYA and caregivers expressed significant interest in more research on all the 11 interest areas included in the interest rating scale. On average, caregivers expressed a higher interest in research than young adults, with an average rating of 4.4 compared with 4 of a 5-point scale (Table 4). Young adults and caregivers deviated in their ranks on many topics but in general were consistent regarding what topics they thought were most and least important (Table 4). Both groups ranked “safety concerns” as the most important and “motivation to transition to an adult healthcare provider” lowest of all the interest areas.

Phase 2

Question development results

In all, 25 health care providers and 5 caregivers participated in question development sessions. Caregiver participants were present at each of the question development sessions. Based on the qualitative data, 10 subconstructs were developed. Approximately 27 questions were generated per construct, totaling 270 questions between the two group sessions. The expert panel reviewed all questions for readability, consistency within construct and subconstruct and repetitiveness. Two constructs were eliminated during the expert panel review process. The Adult health responsibility questions were moved to other constructs (i.e., medication management and developing goals). The Guardianship construct while important does not relate to skills young adults need to be medically independent; thus, this construct and questions were cut. The resulting version of the caregiver-reported HRI measure consisted of 58 questions and 8 constructs. Four-point Likert-scale response options were utilized to provide response options applicable to AYA of varied ages and with behavioral and functional differences. Answer choice descriptions gave caregivers context for each answer choice (e.g., Independent- My young adult can complete the task without adult guidance or support versus Dependent- My young adult is totally dependent on the parent or caregiver to complete the task). Nineteen questions utilized the alternative answer choice of “Strongly Agree,” “Agree,” “Disagree,” and “Strongly Disagree.”

Phase 3

Cognitive interview results

Fifteen caregivers completed cognitive interviews lasting ∼60 minutes each (Table 1). Based on these interviews, 9 questions were revised, 3 questions were added, 1 question was removed, and 27 explanations for keywords in questions were added for clarity. We also arranged the order of the questions so that similar topics were grouped. The additional questions were derived from other complex questions that were erroneously covering more than one concept. For instance, the original question, “My young adult can describe his or her physical and mental health conditions to someone else.” Was revised to make one question that focused on physical health and another that focused on mental health. Questions were changed to clarify meaning and clarity. For instance, an original question read, “My young adult can ask questions about a treatment plan provided by a doctor if it's something he/she/they does not agree with or understand.” The revised question read, “If my young adult does not agree with or understand a treatment plan given by a doctor, he/she/they can ask questions about it.” Finally, definitions and examples were added to many questions to further explain a concept or give a real-world example of the activity. For example, in the question, “My young adult knows what is appropriate to disclose on the Internet,” this text was provided for clarity, “For example, knowing not to give out a phone number, address, medical information, etc.” Similarly, when discussing “providers” in questions about health care workers, we provided the following examples of types of providers: general doctor, specialist, and counselor. These definitions and examples were able to be seen in the electronic survey by scrolling over, hovering, or clicking on the term or question that they related to. Paper formats of the survey had term definitions and examples attached to the back of the survey.

Pretest results

Pretest data were collected on 21 caregivers who completed the HRI survey and follow-up phone or in-person interview (Table 1). Nineteen participants completed the survey online with telephone follow-up, and two participants completed paper versions of the survey followed by an in-person interview. Data showed no indications of ceiling or floor effects in the participant's response choices. All participants completed the survey in 7 to 20 minutes. On average, participants took ∼10 minutes to complete the survey with several demographics questions added to the HRI survey question. When asked participants, all reported that they experienced no fatigue when completing the survey, found no redundant questions, and reported that the number of questions was appropriate. Three participants noted that some of the questions were not age-appropriate for the younger young adults. These questions included the transfer to an adult provider, the ability to manage a bank account, and the ability to take medication without assistance.

Participants also discussed individual question issues and specific wording changes. This discussion led to changes to the wording of five questions, changes in response options, additional explanations for seven words/concepts, and numerous formatting changes to the online survey. For response options, the term “prompting” was added to better describe possible assistance that AYA might receive. Response options for questions about young adults' knowledge were changed to a Likert-scale of strongly agree to strongly disagree to better reflect the question asked. For additional explanations, definitions and examples were added to the survey questions. Within the electronic version of the survey, participants can scroll over terms to reveal definitions and examples. For example, on a question about the effect of medications scrolling over the question allows the participant to see: “For example, your young adult knows if (s)he does not take his or her anxiety medication, (s)he knows that his or her anxiety is more likely to occur.”

Discussion

This study aimed to highlight the development of an important measure of independent skill development, which incorporated the perspectives of AYA and caregivers. This study used qualitative methods to obtain an in-depth understanding of AYA and caregiver transition needs. Twelve themes were identified as important to the successful transition to an adult model of care and overall HRI. These themes were then used to develop HRI constructs, subscales, and individual questions in a team-based approach with caregivers, clinicians, and autism researchers. Cognitive interviews and pretesting methods were used to clarify individual questions, answer choices, and formatting of the measure. The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions. An examination of the psychometric properties of this HRI measure was conducted and reported elsewhere (under review).

The caregiver-reported HRI measure examines what AYA and caregivers constitute as positive HCT and independence-related outcomes as well as what they identify as skills needed to successfully transition to adult care. Similar to other HCT readiness measures, the HRI will ideally be integrated into clinical care and conducted at AYA biannual or annual medical appointments.^8,49 Previous measures have been implemented around 14 years of age and conducted yearly with increased implementation as the young adult ages or based on need.^24,26,49 The measure may also be applicable for school and other services due to its multidimensional nature. Finally, when validated, the HRI will have important research benefits. This measure will help fill in the void of functional outcome measures for AYA described in the 2017 Report to Congress: Young Adults and Transitioning Youth with ASD.³¹

The 12 themes identified in the AYA interviews and caregiver focus groups cover a wide range of health topics and more general independence-related topics. Both groups discussed similar constructs and their interest rating scale scores aligned well. Although few studies specifically examine the HCT needs of AYA and their caregivers, previous studies have shown that AYA and their caregivers report many health-related concerns.^{25,28,30–32} Mental health condition knowledge and treatment have been consistently identified as an important health issue by caregivers and AYA alike.^25,30,32 Many AYA within this study discussed the importance of knowing their physical and mental health conditions and being able to seek out information and help. The HRI will include multiple questions about AYA mental health condition knowledge and management. The inclusion of these questions will provide clinicians and researchers with a better understanding of AYA mental health management needs.

Safety and sexual safety concerns have been well documented in the literature and were identified in two themes within this study.^27,31,50 Our findings extend beyond previous research in detailing significant concerns caregivers had about their young adult's vulnerability across numerous areas. Some AYA described similar fears and protective behaviors, such as not leaving the house alone, which may significantly limit their ability to learn independence and develop self-determination skills. Future research and educational programming are needed to teach important safety and sexual safety skills while encouraging AYA to take on greater responsibilities and participation in the community. This study identified several themes that are not often discussed in the HCT literature, including self-care skills, financial management, self-advocacy, adult responsibilities, and guardianship. These concepts may be outside the scope of HCT and/or are not significant areas of interest or concern for most AYA and caregivers. Additional research on these specific topics will determine the importance of the topic to this population and identify how HCT interventions may assist in their development.

The caregiver-reported HRI measure shares many of the same subscales as the most frequently used HCT readiness measures in the field—the STARx, TRAQ, and UNC TR_xANSITION.^24,26,51 Each measure includes questions about condition knowledge, medication management, and participation in the health care visit. For many of these topics, the HRI assesses a wider range of health-related and communication skills that may be more challenging for AYA or developmentally disabled individuals compared with those with physical health conditions. Furthermore, the HRI includes questions related to both physical and mental health conditions, identified as particularly important to AYA. Similar questions are likely applicable in future measures as the prevalence of mental health issues increases for many populations.^52,53

Several constructs within the HRI measure are not included in other HCT readiness measures, including Safety, Relationships and sexuality, Finances/financial management, Self-care/health and lifestyle, and Health success/self-advocacy. Future testing of the psychometric properties of the HRI measure will help determine if these constructs fit into the overall concept of HRI (under review). If a strong relationship between these constructs and the concept of HRI is identified, it will be important to examine how meaningful these topics are to other groups of young adults and caregivers. Identification of new HCT topics that are important to all special needs populations could have major implications on the field of HCT and special needs work.

Limitations

This study aimed to work with AYA and caregivers to develop the HRI measure but fell short in several key areas. While the study included young adults in Phase 1 of the study, they were not involved in the question development (Phase 2) or initial testing (Phase 3) of the study. Further to fully incorporate young adults into the research process, their views should inform the development of the qualitative interview guides and all portions of the study. These limitations were due to limited funding and scope of the project but should be corrected in future work and validation of the HRI self-assessment. Multi-rater reports of HRI in which both the AYA and caregiver provide their assessment of the young adult's level of independence are ideal. Current projects to develop and test a young adult self-report version of the HRI are ongoing.

Conclusion

Few studies have examined how to prepare AYA to manage their health and self-care needs and the transition to an adult model of care, and no autism-specific measure of HCT readiness was available. We used a mixed-methods approach to develop and test the caregiver-reported HRI measure. The caregiver-reported HRI provides a holistic understanding of an AYA ability to manage their health, health care, and safety needs. This measurement development description provided insight on the measure; how to collaborate with AYA, caregivers, and clinicians in measurement development; and provides lessons learned for future work.

The caregiver-reported HRI measure covers important concepts that promote successful HCT, greater independence, and improved safety across multiple settings. These concepts have been deemed important to AYA and caregivers yet are not included in current measures. Furthermore, increasing independence in one area of life has been shown to increase independence in other areas of life; thus, the HRI measure can have far-reaching impacts on autistic adults' health overall independence.

Authorship Confirmation Statement

N.C.-Z. conceptualized the study, conducted some data analysis, and wrote the article. M.T. conducted qualitative data analysis and contributed to writing the article. A.T. aided in the qualitative data analysis and formatting of the article. All co-authors have reviewed and approved the article before submission. This article is being submitted only to Autism in Adulthood, it will not be submitted elsewhere while under consideration, and, should it be published in Autism in Adulthood, it will not be published elsewhere—either in similar form or verbatim—without permission of the editors.

Footnotes

Acknowledgments

We give tremendous thanks to the autistic young adults and caregivers who participated in this study and for the many clinicians and advisors who provided thoughtful input and helped keep the project moving.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Department of Defense, U.S. Army Medical Research and Development Command (USAMRDC) Office of Research Protections, Human Research Protection Office (HRPO) Study number Proposal AR130405) and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This study was funded by the Assistant Secretary of Defense for Health Affairs, through the Autism Research Program, Idea Development Award under Award No. W81XWH-14-1-0604. Opinions, interpretations, conclusions, and recommendations are those of the author and are not necessarily endorsed by the Department of Defense. The U.S. Army Medical Research Acquisition Activity, 820 Chandler Street, Fort Detrick, MD 21702-5014, is the awarding and administering acquisition office.

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