Table 4:

Key Themes, Lessons Learned from Expert Panels

Key Themes	Lessons Learned	Example Quote	Discussed in:
General Information regarding instrument			EP1	EP2	EP3
Multi-dimensional health model	importance of all three (physical, social, emotional) health – and balancing all three (e.g. physical safety vs social inclusion on riding bus) model of health vs disease	“I think the focus on these three parts of health is very important”- EP2, S5 “[He] defines health as feeling whole, and talks about how you can be healthy even if you have a disease present. And… that you can heal even if you’re not getting rid of an underlying condition. …But a person can still feel whole and healthy.”- EP2, S4 “Health is a much broader set of things that may encompass your family and where you live and what you eat and when you exercise and a lot of things” – EP1, S5		+	+
Respondent - Self vs proxy	perception of energy level different between parent and teen depending on age or developmental stage parents’ viewing and perceiving through parents’ eyes (and what would make parent feel happy / healthy) teacher assuming child would be unhappy b/c of doing different activity, vs child is happy to be doing a different activity if can be with friends reports could differ because of differences in context (school vs home –“I can’t say how my son would interact with 25 peers” so I have to give some validity to teacher) self-report should be tailored in a way that makes sense, and paired with visual stimuli, and abstract questions (like mental health) might be more appropriate for proxy self-report would be best ‘in the moment’ or based on ‘current’ status would get different responses: time (recent vs 12 years ago), memory, grief, rumination / repetition / perseveration without affect or emotion, might be easier to answer physical health (over mental or social health), sexuality age-based	“The young adult might say, “Oh. I’ve got lots of energy and I feel completely fine with what I’m doing,” and the parents saying, “You’re a couch potato.” So how those things-- same activity level, two different perspectives.”- EP1, S3 “For this section there probably needs to be a bigger distinction of who’s reporting, and maybe very separate questions for, “Is this the individual answering these questions or the parent answering these questions?” So yeah, especially I feel for the mental health, it just could be very-- it could be perceived very differently.- EP1, S6 “But [the teacher] had just assumed, “Well, I would be miserable if I couldn’t do XYZ.” But she’s not. There’s no school avoidance. There’s nothing to indicate that she’s not happy being here. She’s not crying, she’s not running away, she’s not under the table. So I think you do have to be careful with where some of the information is coming from and really carefully balance it.- EP2, S3 “We’ll have a patient say something that’s sort of either incongruent with their affect, and then the parent will be sitting side by side and sort of shaking their head, waiting for them to finish politely. And then all of a sudden the parent will sort of delicately navigate trying to validate what they’re feeling, but also say what they said wasn’t really what’s happening, I guess. That it’s not the full picture.”- EP3, S6 “…that self-report might be dependent just on that day for someone.”- EP2, S7 “Sometimes when parents report, we look at their life through our own eyes like, “What would make me happy?” And sitting in a room doing this repetitive activity would not make me happy, but he is actually happy doing that.”- EP2, S5 “But at the younger ages sometimes it is in terms of being able to identify emotions and label them and then be able to advocate to another person what it is that you’re feeling. And then there’s also as you get older your ability to advocate or communicate with a peer versus with an adult. Those are often different.”- EP2, S3	+	+	+
Time / reference period of instrument	to complete retrospectively about past health / history, or based on current views? to complete once, or to repeatedly assess?	“I wouldn’t focus on, necessarily, the diagnoses because I can have anxiety but it’s well managed. It’s more like, “What are my current sort of symptoms that are causing me ill health?”- EP1, S3 “-- I think, change from baseline, is a really important way to kind of think about it, too, because everyone has their own sense of what their health looks like.”- EP3, S4 “We know that a lot of times individuals with this profile tend to be very in the moment and will report on kind of how they’re doing right at that time, which especially if in a doctor’s office, might not be reflective of how they’re doing day to day.”- EP3, S4	+
Use of the instrument	Is it to standardize the demographic that people would be collecting for medical and health conditions, or is this to look at outcome measures for studies that might be changing health, or both? function of instrument – raise family awareness of symptoms and how family is managing – behavior, sleep complexity of instrument to assess each aspect in detail	“One, if you’re looking at it just for research to get a static measure of health outcomes, yes, you want to know if somebody has more of these [inaudible] contributors. But then if you’re looking at change over time for clinical trial, then I don’t know if any of these would actually change over time. So you might want to look. It sort of impacts-- it just impacts how you look at the domains, how you develop the items, and then how you put them into the measure.”- EP1, S3	+	+
Individual views	range in population with Down syndrome, and how to find a central concept of wellness – is there one concept of wellness? don’t make assumptions; don’t presume what someone can’t do based on number of diagnoses or list, or a number score, or IQ from perception of health to objective information such as weight the need for supports depending on cognition; some aspects of mental health would need support / not be able to be done independently, the outliers that would be possible regardless of cognition were resilience and empathy the concept of something meaningful and engaging – such as music and things that brings someone joy “what she enjoys, what will make her thrive, what will make her grow friendships, be a part of the community”; something they look forward to going to	“She is who she is and we’ll measure her against her own personal growth.”- EP2, S3 “It depends really whether fundamentally there is one concept of wellness or whether a different person has their own concept of wellness and really whether you’re trying to tap into whether that has changed or not I think?[…] Are you wanting to know that they’re in their own sense of wellness that the sense of wellness is better than it used to be or not or are you really going to be able to compare two very different people’s worlds with the same measure?”- EP1, S9 “I mean, if I were a marathon runner, I’d be in really, really bad shape right now, but if I was comparing myself to somebody who’s morbidly obese, I’d be in great shape, so it’s very much, a kind of a continuum, and it’s based on what your expectations of yourself are, I think.”- EP3, S5	+	+	+
Context in Family – intersection of child health and family health	health within the health of the family (stressors, alcoholism, etc) and family lifestyle (active) Are child’s medical needs – like sleep – impacting the family and causing stress? birth order could impact parent’s reaction or focus or attribution of things to Down syndrome	“So family health, how the family are coping, and this is not easy to see how you pick up all these measures easily. But something around how parents report their own health, their own situation, and how they feel and their mood and whether they participate in the community and feel they have support. There’s things around all of that that are definitely going to impact on the health of their children.”- EP2, S1 “What’s happening within the family, family resources, etc. and how that could impact the individual but perhaps causing them loss of sleep, so loss of sleep is going to cause more problems for an individual including fatigue, etc. so it’s hard to know which way that goes …and somebody’s health could actually have quite an impact on the family dynamic and family functionality.”- EP2, S6 “If there’s poor family dynamic, it’s probably impacting the other children in the family as well, with or without a child with Down syndrome.”- EP2, S5		+
Context in Culture	how one’s culture views things (e.g. culture view of “you don’t tell a teacher you’re sick”) or view of weight and exercise access and engagement in non-English speaking families – if there are different resources or support in place, and are there other sources of social support (church, extended family)	“Culture plays a bit into this too because in some cultures, you’re not supposed to tell that you’re not feeling well.”- EP2, S9		+	+
Context within Down syndrome	definition of health in Down syndrome the “normalcy” of things that are appropriate in the population but might not be in others – such as, self-talk, regulating behavior and mood communication – and how will the individual give a response / report – typing, speaking, with parent assistance	“For me, the definition of health for a child with Down syndrome would be the same as the definition of health for anybody else.”- EP2, S1 “There is certainly health issues that are different for people with Down syndrome and things that you have to be on the lookout for.”- EP2, S5		+	+
General information regarding conceptual model
Looking past diagnosis: From Medical to Symptoms / impact that person would perceive	how health intervenes in daily life, stability of diagnosis, manageability from diagnoses to symptoms (physical and mental health) functionality (how does list of diagnoses impact their function)	“As a psychiatrist, I wouldn’t be measuring too much about diagnosis. I don’t think that they’re so reliable. And I think that a lot of the questions can do a better job of sort of tapping into symptoms and factors and things rather than diagnosis.”- EP1, S9 “Between what you’re all saying about something that might be a list on paper and people going from that to making assumptions, where actually, what you need to do is observe, observe how the child engages, observe how they might be able to be engaged in sports and so on. It’s actually observing the child’s behaviors.”- EP2, S1 “Very often, people get a mindset the child’s like this because they have Down Syndrome. Not that this is something eminently changeable.”- EP1, S1	+	+
Motivation / desire	ability to do daily activity vs desire to do it	“I think about kind of comfort, both with regard to the absence of physical pain, and obviously, you want to be physically active without [pain]. I think just the comfort, both, I guess, from a physical perspective, but also from a mental health perspective-- the absence of stress, but also the presence of pleasure and interests and desires and motivation.- EP3, S4	+
Setting: Social interaction in classroom	engagement, observation in classroom the multiple steps to become part of group (approach, introduce, etc) noncompliance – due to environment and feeling overwhelmed / overstimulated	“So I think for the older population, the community participation, socialization, relationships all look very different if they don’t have support staff.”- EP3, S7 “Is it the child’s or is the environment? Because I remember being told my son was non-compliant in kindergarten because in centers, he would just sit down and not do anything and she’d say-- And I don’t understand it because he’s got all these choices. And I said, “Yeah. Well, he’s got all these choices. He’s totally overwhelmed. Give him two choices.” So that’s not non-compliance. That’s the environment being—overstimulating. …And so to tease that out from these reports is also important because otherwise, we’re trying to fix this kid when really the kid is not the issue.”- EP2, S5		+
Setting: School, and Mental health in the classroom	signs of school quality – inclusion in preschool, lifeskills program, therapies (OT/PT/ST) integrated into school day access to support staff ability to focus, attention; stamina to do a task (physical and mental) self-regulation – to filter out noise, keep attention to what I’m doing vs what other student is doing, a range of executive function to maintain attention, resilience (sensory, too much work / prioritize tasks communicating wants / needs, self-advocacy (saying “no” if a child takes something, how can I ask a friend to play or for help) and interplay with communication level feeling of acceptance in school	“If you’re including up to age 22 then you’re really capturing an age range of people who are just approaching that major change as they age out of school district services…. It seems like there’s huge variability who gets pulled out of that regular classroom and at what age.”- EP1, S8	+	+
Opportunities	class size, student: staff ratio, teachers (how educators model interactions) “appropriateness” of inclusion – depends on how you define it, for an individual child, in an individual setting, etc. and practicalities of the situation, location barriers to medical care or variation in advocacy / resources as impacting the number of opportunities and include the lack of opportunity – are they not doing something because it’s not available – dances, conventions (local and national), teen hang-outs, choirs, volunteering – “can’t fault someone for not participating if it’s not available to them”	“I work in an urban school district where a lot of families that were in poverty. And I had the programs that had a lot of children with Down syndrome and …the number of families that I found that were not connected to anybody and didn’t access or hadn’t seen a developmental pediatrician were astounding.”- EP2, S3 “So I guess what I’m trying to say is that appropriateness [of placement] depends on how you’re defining it- EP2, S5 “Kids who have general ed have a higher likelihood of being successful and employed as adults, which, overall, is going to give you better health and social opportunities as adults.”- EP2, S3 “I think one thing that just first comes to mind is first just having kind of your basic needs taken care of. That you have enough resources available to you. That you are able to do things like eat healthy and exercise and have leisure time and things like that. Kind of having that basic level of kind of thinking of the socioeconomic factors you were talking about. I think that does have a big impact on health, being able to access or have fewer barriers to those type of healthy behaviors.”- EP3, S3 “And services are widely different across the country and the state. If you have a really good advocate, someone that knows the system and knows how to advocate well, that person’s health may look much better than somebody who doesn’t know how to advocate or know how to fight for the things that they need to fight for. So we see a wildly different range of healthcare being provided based on advocacy.”- EP3, S7 “I guess what I’m saying also is that we shouldn’t fault somebody for not participating in something until we know that it’s available to them. It’s not that they’re not doing it, it’s that they can’t do it.”- EP3, S1		+	+
Communication	the comparison between speech vs communication vs language	“But there’s different ways of communicating and are they able to use the different ways of communicating and are they able to use all the different ways of communication? Well, some students might use a device to communicate. They might use text, they might use verbal, they might use signs, they might use-- So I feel like if you have social health and you’re looking at these relationships and stuff, can they use their communication to have opportunities and to build those relationships?”- EP2, S7		+	+
Interconnections between dimensions	inclusion vs social isolation – how this could impact social health, mental health and even physical health communication and relationships	“Language is very different. So language, we would have neurological as far as the brain functioning, and it would go into cognitive to mental health and also to social health. So it’d be different, but speech would fit in more, I think, with physical health. And I think one of the difficulties that families encounter is that the education system and speech-language pathologists don’t distinguish between those.”- EP3, S1 “Can you get where you need to go, for example? Are there transportation barriers? Maybe it’s not mobility in the sense of the actual person. I don’t know. Are there barriers to obtaining adaptive equipment? I’m just sort of thinking. Are there barriers within the system based on the psychosocial situation?”- EP3, S6		+	+