Plain English summary
Introduction
Methods
Study design
Settings and sample
Data collection
Data analysis methods for objective 1
Data analysis methods for objective 2
Rigor
Results
Phase 1: Description of knowledge gaps and supportive resources
Demographic information | Older adults | Caregivers | Healthcare providers | Healthcare leaders | Government leaders | Total |
---|---|---|---|---|---|---|
Total unique participants | 7 | 5 | 13 | 14 | 11 | 50 |
Phase 1 (Phase 2) | 7 (4) | 4 (5) | 13 (4) | 14 (6) | 9 (4) | 47 (23) |
Province of residence | ||||||
British Columbia | 3 (2) | 2 (3) | 6 (1) | 11 (5) | 2 (2) | 24 (13) |
Alberta | 4 (2) | 2 (2) | 7 (3) | 1 (1) | 2 (0) | 16 (8) |
Other | 0 (0) | 0 (0) | 0 (0) | 2 (0) | 5 (2) | 7 (2) |
Gender | ||||||
Female | 6 (3) | 4 (4) | 9 (2) | 13 (6) | 5 (3) | 37 (18) |
Male | 1 (1) | 0 (1) | 4 (2) | 1 (0) | 4 (1) | 10 (5) |
Age | ||||||
Mean age (years) | 84 (85) | 69 (67) | 46 (56) | 53 (54) | 47 (52) | |
Range (min–max) | 67–93 | 65–77 | 33–63 | 37–65 | 31–58 | |
Marital status | ||||||
Married | 1 (1) | 4 (5) | N/A | N/A | N/A | |
Widowed | 4 (2) | 0 (0) | N/A | N/A | N/A | |
Never married | 2 (1) | 0 (0) | N/A | N/A | N/A | |
Highest level of education | ||||||
High school | 1 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 1 (0) |
College, trade, or CEGEP degree | 4 (2) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 4 (2) |
University Undergraduate | 1 (1) | 1 (1) | 4 (0) | 1 (1) | 0 (0) | 7 (4) |
University Master’s | 1 (1) | 3 (4) | 7 (4) | 9 (3) | 6 (2) | 26 (13) |
University Doctoral/Medical | 0 (0) | 0 (0) | 2 (0) | 4 (2) | 3 (2) | 9 (4) |
Employment status | ||||||
Part time work | 0 (0) | 0 (0) | 0 (0) | 2 (1) | 0 (0) | 2 (1) |
Full time work | 0 (0) | 1 (1) | 13 (4) | 12 (5) | 9 (4) | 35 (14) |
Retired | 7 (4) | 3 (4) | 0 (0) | 0 (0) | 0 (0) | 10 (8) |
Range in current position (years) | N/A | N/A | 1–29 | 1–15 | 1–18 | |
Annual salary | ||||||
< $31,000 | 1 (1) | 0 (0) | N/A | N/A | N/A | |
$31,000 to $50,000 | 5 (3) | 1 (1) | N/A | N/A | N/A | |
$50,000 to $70,000 | 1 (0) | 0 (0) | N/A | N/A | N/A | |
$70,000 to $90,000 | 0 (0) | 1 (1) | N/A | N/A | N/A | |
> $90,000 | 0 (0) | 2 (3) | N/A | N/A | N/A | |
Self-reported ethnic backgroundb | ||||||
Canadian | 2 (0) | 0 (0) | 1 (1) | N/A | N/A | |
Caucasian | 0 (0) | 1 (2) | 6 (2) | N/A | N/A | |
European decent (English, English/Scottish/Irish, German, Scottish/French, Ango-Saxon, Scottish/British, Irish/Scottish, European) | 5 (4) | 2 (2) | 2 (0) | N/A | N/A | |
Japanese Canadian | 0 (0) | 1 (1) | 0 (0) | N/A | N/A | |
Indo-Canadian, Asian, Pilipino | 0 (0) | 0 (0) | 3 (1) | N/A | N/A | |
Iranian | 0 (0) | 0 (0) | 1 (0) | N/A | N/A | |
Born in Canada | 5 (3) | 4 (5) | 11 (4) | N/A | N/A |
Older adults and caregivers | ||
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Objectives (mapped onto interview questions) | Categories | Exemplar Quotes |
Knowledge gaps (barriers) to using QOL assessment tools (“Please share with me your experience using QOL assessment tools?”) | • What does quality of life assessment mean? • What is the objective of these assessments? • Who is filling out the assessments? • How is the data going to be utilized? • How are the tools going to improve my care? • How is the data going to accurately represent my quality of life? | “You’ll have to refresh my memory because I’m not quite sure what you mean by quality of life assessment”PAC#1 “I understand them, but I don’t know how helpful they would be, no matter what you put down there. Say for example like you ask me, “Over the past two days, my life was utterly meaningless and without purpose,” zero to 10. I mean if you pick the zero, I presume you’re ready to jump in the river, right? But a 10, what would that tell you? What are you going to do with information like that?” PAC#10 |
Supports to using QOL assessment tools: Perceived benefits (“I’d like to know about any ways in which QPSS assessments has been helpful to you and your care, and ways it could be more helpful in your care?”) | • Helpful in self-care • Helpful to other patients • Helpful to the system in making changes and improvements | “Well, every time you’re asked questions about activities, personal activities, maintaining health… like, health maintenance is so important at an advanced age, and every time you’re reminded of something, I think it encourages you to keep on doing whatever health activities you’ve been told you must maintain. I think that the more seniors can be reminded that they’re not alone, there’s a whole lot of us out there, the better it is, and the more encouraged we are to participate in our own healthcare maintenance." PAC#14 |
Supports to using QOL assessment tools: Recommendations of resources (“Are there any resources that might be useful to you or other patients/caregivers or that would help you and other patients/caregivers complete these QOL assessments routinely either by yourself or with your healthcare provider?”) | • Material (pamphlet or videos, written blurbs, read-aloud surveys) • Services (routine training, active one-on-one or group engagement sessions) | “Well, whatever information it is that you’re trying to present, you would want people to be able to see it, to hear it well, and to come away from it feeling that they had new information, would help not only themselves but other people, maybe in their family or down the street.” PAC#14 “Yeah, it might be helpful to have a video tutorial. I don’t think, for most people, having more written material is the way most people want to go. But it’s the kind of thing I’m sure that if you said, “We had a two-minute video” or “a five-minute video” or something, I may watch. If you sent me a package of material that’s 20 pages long, I’m probably not going to read it, or at least all of it or with a great deal of attention.” PAC#3 |
Healthcare providers | ||
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Objectives (mapped onto interview questions) | Categories | Exemplar Quotes |
Knowledge gaps (barriers) to using QOL assessment tools (“Please share with me your experiences with using QOL assessment tools or using the Quality of Life and Practice Support System in your practice?”) | • How to use it in our practice? • Who is going to initiate the assessment? • How is success going to be measured? • How are different case loads being considered? • How are caregivers being supported? | “I think the knowledge piece… I think a few things. There’s the lack of recognition of the tool, the awareness that the tool exists and how to access it, where it’s found in the chart, how to get that data, and the validity of the data. And really the question is, how will clinicians be able to process this information in a way that kind of makes it fun, makes them think they’re really changing up how they practice, but that doesn’t add workload?” HCP#4 |
Supports to using QOL assessment tools: Perceived benefits (“How has the electronic QPSS system or paper QOL assessment tools been helpful to you in providing care to the frail elderly and their caregivers?”) | • Improves healthcare providers’ critical thinking and reasoning to provide better patient- and family-centred care | “We can see the trends and we can just discuss ‘Okay, well, what’s changed compared to last month or a couple of months ago?’ We could use it as a case study, so we can see what’s happening on a specific client, you know, the graph was here and now the graph is down here, and that would be kind of interesting to see, why is this… what’s happening with this client and the family and bringing that up. I think it improves our critical thinking skills and coming together as a team, it will help us, each other, and for the client and family as well.” FG#1 P1 |
Supports to using QOL assessment tools: recommendations of resources “Thinking about your experiences using QOL assessment tools in your care, can you recommend any resources, like educational material for example, that would be especially beneficial in helping you routinely use these tools?” | • Material (electronic and paper guidelines /quick tips/checklist; educational resources; online learning modules; a resource directory/referral list/resource tree; infographics) • Services (training and mentoring; continuing education; alarm or trigger notification; system integration) | “The quick tips, because I know P3 has made up these little quick-tip sheets for us that make it… you can sort of access it and what exactly are you looking. Anything that can help you manage a system or do a process… Checklists. Like a quick checklist. it just makes it easier and quicker … kind of like a quick overview… Because a lot of times when you’re sitting and you have multiple systems open on your desktop and then I have this piece of paper here that I just kind of flip through, and I just kind of go through and make sure that I have everything I need before I save and complete.” FG #1 P2 |
Healthcare managers and leaders | ||
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Objectives (mapped onto interview questions) | Categories | Exemplar Q uotes |
Knowledge gaps (barriers) to using QOL assessment tools (What concerns might you, or other people in your organization or program have or foresee regarding the use of PROMs and PREMs?”) | • How to operationalize deploying PROMs and PREMs in the real world? • How to use PREMs information to change clinical practice? • What are the similarities and differences between QoL information and clinician’s assessments? • What are the financial implications of using QoL information in decision-making at the organizational level? | “How does that (QPSS tools) help support the journey of the patient to get to where they feel or how they define health and wellness for themselves? How are we empowering the patients to understand what this data is and what we could use it for, and being able to speak to it and bring it to the conversation? How are we thinking provincially on a bigger scale? What are we actually using this information for? How are we then translating that down to the people who need what information?” HML#15 “Would this be a completely separate system? How would it interact with the current health authority systems? Are there any confidentiality and privacy issues with that?” HML#16 |
Supports to using QOL assessment tools: Perceived benefits (“Please share the successes if any, your organization or program have had regarding the use of PROMs and PREMs.”) | • Helpful in providing better quality care/service • Ensuring client’s needs are met • Helpful as a decision-making tool | “All of that data that the patient is pushing to the home care nurse enables them to make different decisions. The other thing it does is it enables them to go more deeply into assessment on the call. If you have the reported outcomes being pushed to the nurse, who then can view them, then she or he can do more deeply in, and not spend all of that time in screening.” HML#9 |
Supports to using QOL assessment tools: Recommendations of resources (“Based on your experience using PROMs and PREMs, please share with me any resources, like clinical pathways, guidelines, forums, list serves etc. that would help leaders integrate PROMs and PREMs in their organization or program?”) | • Material (short online modules and webinars; journal article, lunch and learn; PDF cycles; clinical education, right assessment tool) • Services (quality of life coach; helpline; interpreter; communities of practice; user groups; Task group with weekly Conferences-Brief Action Planning tool; incentives like accreditation) | “I think multiple mediums is always a good thing, clinical support tools, maybe a learning module, a video. You know, a YouTube video. I think that the practical application piece you can only do through some sort of media medium. Because I find that a lot of the nurses and interprofessional team really prefer being able to access educational information any time of the day or night. So being able to have those platforms of access to educational resources to me would be the best way to go when we talk about continuing education. And that is current, right? So, it’s current, it’s evidence-informed.” HML#42 |
Government leaders and decision-makers | ||
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Themes | Categories | Exemplar Quotes |
Knowledge gaps (barriers) to using QOL assessment tools (“What concerns might you, or other people in your organization have and what challenge do you foresee regarding the use of PROMs and PREMs/QOL assessments informing healthcare decision-making or healthcare policy?”) | • How the data collected could be useful in driving quality improvement initiatives • How the assessment data can be used at the macro-level to inform decision-making | “I think the challenge for us is, how do we collect the data? And then, if we collect the data, is it for system planning or is it for individual patient feedback? And it’s a challenge to collect for both, because probably the way you collect it might be different and so it is sort of a question of, what are we going to use the data for? And then, how do we collect it routinely? How does it get used?” GML#2 “I think that they’re [leaders] well aware of the importance of including patient voice, even if they’re not sort of aware of quality of life assessment tools. But I’m not sure that they have the knowledge to work with that information at this point and to… you know, they just haven’t been taught that this is a good way of making decisions or contributing to decisions.” GML#5 |
Supports to using QOL assessment tools: Perceived benefits (“What do you think is the value of collecting patient perspectives to guide and inform complex policy decisions?”) | • In resource allocation decisions in partnership with patients • Understand trends and relationships for policy and evaluation • Improving quality, service, and patient outcomes | “The dream for me is that it is useful for being able to direct resources to those areas that patients are telling us is most needed, rather than something for clinicians or administrators to think they know where the resources should go. But the dream is that we’re making these kinds of decisions not just from behind the desk but in partnership with patients. That’s what PREMs and PROMs are all about is making sure the patients are included. So, that’s the dream, whether or not it’s a realistic reality.” GML#5 |
Supports to using QOL assessment tools: Recommendations of resources (“Are there any recommendations or resources that you need or that might be useful to you or other government leaders to use PROMs and PREMs for health policy at regional, provincial or national levels?”) | • Material (case studies demonstrating relevance or resources; educational sessions where people manipulate their own data; stories and visualizations; face to face sit-downs with providers and policy makers; webinars, workshops, educational sessions, interactive online modules; toolkits; interactive database; sharing information through journals short videos.) • Services (in-house internal data manager or QI specialist; research support unit like the APERSU (Alberta PROMs and EQ-5D Research and Support Unit) | “I think the best resources are when the data is presented in using data visualization where you can see by looking… it’s intuitive when you look at the picture or the infographic or whatever it is. It’s about the data display in a way that people can understand it without necessarily understanding all the methodologies and statistics that sit underneath it. So, data display techniques that are clear and intuitive, I think those are the best kind of resources. The other thing that we talk a lot about is storytelling as being effective means to communicate, right? So, what’s the story, and what’s the patient’s story and the individual that might, you know, shed light on what the data means?” GML#1 “I think like brief toolkit, like brochure-ish type explanations, graphic examples, little videos. I think those would be… Definitely demonstrations of actual use, like vignettes of how the systems can be… how quality of life information can be incorporated into decisions, like with real examples” GML#7 |
Phase 2: Development of tailored KT resources
Description of initial KT resources
Participant group | KT resource* | Description |
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Older adults and family caregivers | Brochure: "Live your Best Life Possible" | Provides a general overview about QOL assessments |
Brochure: “Frequently Asked Questions (FAQs) about QOL Assessments” | Addresses questions that older adults and family caregivers asked, with responses informed by evidence-based sources | |
Healthcare providers | Brochure: “Start the Conversation about QOL Assessments” | "Conversation starters" for clinicians to introduce QOL assessment tools, along with talking points to use in their interactions with older adults and family caregivers |
Brochure: “The Truth about QOL Assessments” | An infographic that addresses possible misconceptions about QOL assessment tools, as well as evidence-informed responses to address them | |
Healthcare managers and leaders | Brochure: “Start the Conversation about QOL Assessments” | Provides talking points for healthcare managers and leaders when speaking with other leaders or decision-makers |
Brochure: “Making a Difference with QOL Assessments” | A fact sheet that offers statistics and details about QOL assessment tools for older adults and family caregivers | |
Government leaders and decision-makers | Brochure: “Fact Sheet about QOL Assessments” | Provides an overview of what and how QOL assessment data can be used to inform decision-making, and offers evidence about the value of QOL assessments |
Brochure: “Frequently Asked Questions (FAQs) about QOL Assessments” | Addresses questions that decision-makers asked about use of data to inform decision-making, with responses informed by evidence-based sources | |
All four participant groups | Whiteboard: “A Better Life: QOL Assessments” | Whiteboard style animation introducing QOL assessment tools and their use in decision-making at the micro level of healthcare |
Video: “A Better Life” | Live-action video describing the use of QOL assessments in clinical practice and its impact on older adults and family caregivers | |
Additional Resources and Supporting Evidence | Additional resources include a full references list for all KT resources, an environmental scan of available resources, and acknowledgements | |
Webpage: www.healthyqol.com/older-adults “QOL Assessments for Older Family Caregivers” | Webpage that provides an introduction and access to each of the above resources |
Formative evaluation to refine KT resources
Older adults and family caregivers | ||
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Exemplar quotes by participants: overall responses to the resource | Exemplar quotes by participants: suggested revisions | Revisions made to the KT resource |
Brochure: “Live your Best Life Possible” | ||
“Oh, from my perspective, this is fine because it tells you what you need. I think I sort of got the picture, so I don’t think I have any particular misunderstandings about what they’re for. So, if this were first exposure, it’s reasonably clear. So, better understand your health, better understand… Yeah, so it’s there, and readers are going to read it, and they’re going to get it. These tools support quality of life assessments. They consist of simple-to-answer questions about your health, your life, your care. I like the repeating of the phrase ‘living your best life possible,’ because some days that doesn’t look very good for a lot of people.” PAC#15 | “I’m trying to put myself in the shoes, the moccasins of somebody who has a Grade 8 reading level. I think it’s probably still pretty good, but for instance, ‘healthcare team,’ what does that mean because that term is used several times on this pamphlet, and I don’t know what that means to the average home care client.” PAC#9 | Made some minor edits that included adding an extra letter spacing and different font in tabs; Changed title above Venn diagram to "Quality of Life Assessments"; Changed sentence under "Proven Healthcare Tools Can Help" to "Tools for Quality of Life Assessments"; Added "Assessment" to title of sample questions; Changed "team" to “providers” in multiple places |
Brochure: “Frequently Asked Questions (FAQs) about QOL Assessments” | ||
“I don’t think the average person knows terribly much (about QOL assessments) unless somebody directly says that to them. I certainly hope this resource would probably get them thinking about some of those things a little bit." PAC#15 | “I’m sorry, my reaction is, ‘Frequently asked questions about quality of life…’ they’re not questions about quality of life. They’re about quality of life assessments. The emphasis needs to be on the fact that this an FAQ about assessments, a how-to on assessments or a why-to, actually… It’s more like a why-to on assessments, rather than anything else. Not about quality of life- very confusing if you keep intermixing those terms.” PAC#15 “Well, what is meant by ‘support system’? I don’t think you’re talking about people’s walkers there…?” PAC# 9 | Edited brochure to include extra letter spacing and different font in tabs; Added "Assessments" to title; Changed "support system" to "social support"; Combined first 2 bullets under "Your answers can help you"; Corrected grammatical word errors |
Healthcare providers | ||
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Exemplar quotes by participants: overall responses to the resource | Exemplar quotes by participants: suggested revisions | Revisions made to the KT resource |
Brochure: “Start the Conversation about QOL Assessments” | ||
“I think the visual that you have – sorry, that cloud or whatever – I think that that nicely outlines, start the conversation because you relate that type of symbol or that drawing to a discussion. I think that just the way that’s set up on the left-hand side, I’m assuming you’re trying to make it look like it flows from one – you know, from professionals down to family – and then down to client and then down to… like, client, families, and then down to the assessment. So, I think the flow is good. It’s not focusing just on the client, but it’s also pulling in the family caregiver or the primary caregiver, which I think is really important if we’re going to be looking at a sort of patient-centred, family-centred care.” HCP#9 | “There’s too many words. When you’re targeting healthcare providers, less is more because otherwise you just get the ‘zzz.’ They’re just not going to read it. So, you could leave out that, ‘Ask older adults living with chronic condition or their family care…’ You just say, ‘Quality of life assessments include a series of questions about their viewpoint, their health, what matters to them in their healthcare experiences.’ Less is more, and condensing it more.” HCP#3 | Shortened description in the title, and corrected "populations" and "groups" to “population” and “people” |
Brochure: “The Truth about QOL Assessments” | ||
“It was just reassuring because it sounds like, you know, sometimes you feel that if you’re giving too many questionnaires, that people feel like you’re not relating to them personally. But it sounds like it’s the opposite that it can enhance your professional relationship because they understand that you care about them and want to find out more. … it seems like there’s no lose and it’s a win/win. So if anything, it can just enhance the information that you already think you know about them and help you deliver better care.” HCP#10 | “I thought it would be nice, and perhaps it’s just myself, but I’d love to see some references to support the statements – myths and/or fact – even just as a footnote on the bottom so if anyone was interested they’d be able to see where it was coming from.” HCP#8 | Made some minor edits for consistency across the material; Moved the description under the title; Used abbreviated QOL; Included tagline “Learn more at: healthyqol.com and find additional resources and supporting evidence” |
Healthcare managers and leaders | ||
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Exemplar quotes by participants: overall responses to the resource | Exemplar quotes by participants: suggested revisions | Revisions made to the KT resource |
Brochure: “Start the Conversation about QOL Assessments” | ||
“I like it. I think that it’s to the point, it’s clean. It has information that will be good to start the conversation if we were to start a conversation with staff. The language, I think it’s perfect. I really like it. I think this is going to be a good resource. If you were asking me to approve it, I would approve it as it is.” HML#6 “Having some tools and resources that you would be able to take to discussions in order to be able to facilitate why it’s important to have a focus on this from a policy and a practice perspective is helpful. And it does I think help to guide some of the key points. I think it’s also good, particularly when you’re using it from a strategic perspective, to have the individuals who are going to be taking this forward have some consistent key messages” HML#11 | “This tool, the infographic tool, is part of it for home health in the context of populations you’ve talked about, as well as for older adults, to give them some information? So, frailty is not defined anywhere, at least that I could… I couldn’t find it. I would re-sequence the introduction, and I would first start with the needs of the older adults versus it being first about the home care performance and accountability, so that the driver always becomes about the older adults and it’s very client-centred versus it being about performance and accountability.” HML-042 There’s just too much information, too many words. That there are talking points. Yeah, I think they could be ‘conciser.’ It’s quite a bit of narrative. Managers and leaders, what I find is the more that you go up the organization, the simpler things have to get because the – what do you call it – the bandwidth is very narrow. So, having a seven-line paragraph is too much.” HML#9 “So, for a leader, everything should be meaningful, right? So, talking point one, well, what is that about? What is the stuff underneath about? I think you could take up the talking point one, two, and three and have those provide a very concise bit about what the talking point is about.” HML#9 | Provided more clarity throughout the document; Added the word "Assessments" in the title; Bolded and italicized "family caregiver" and "older adults" in the title; Broke up the information into shorter bullet points instead of a long paragraph; Removed word titles under "Talking Point” and replaced with numbers; Switched the order of numbers; Made #3 into two paragraphs; Quotes put in bold purple for better contrast |
Brochure: “Making a Difference with QOL Assessments” | ||
“I thought it did a great job, I can see both at the patient level and the benefits at the population level why would it be beneficial, because I think sometimes when you’re down more on the ground level, like me as a physician, I could argue I could get the information maybe in a different way than a standardized tool but then to say, “Okay, but when we’re trying to take that up to the next level of the population,” and the value of that, I thought that made that very clear.” HML#10 | “Like I have short hair, so I don’t necessarily think that this is a man or this is a woman, or that they are only men. This is my thing. Well, the only thing that it could be different maybe, it is to have some colour on these people, as they are all-white. So, have like different colours maybe. This could be something. But only that.” HML#6 “If we had another tab that would have literature about quality of life assessments in general, like the importance, all those things that you ended up putting into this. So, I would like to see some papers here, like to have them available for me to look at if I wanted.” HML#6 | Moved sentence "this resource focuses on…" to the introduction; Bolded "older adults" and "family caregivers" in the introduction; Deleted the line between individual and population level; Revised #1 under population level to read, "optimize quality improvement initiatives to better meet the needs of older adults and their family caregivers" instead of "optimize healthcare system performance and quality today and over time"; Included a line at the bottom of this resource “Learn more at: healthyqol.com and find additional resources and supporting evidence” to steer readers towards the references |
Government leaders and decision-makers | ||
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Exemplar quotes by participants: overall responses to the resource | Exemplar quotes by participants: suggested revisions | Revisions made to the KT resource |
Brochure: “Fact Sheet about QOL Assessments” | ||
“I think the fact sheet is… you know, it’s clear. It’s concise. It avoids, for the most part, healthcare jargon. Again, it’s because I would see this potentially being a tool that could be used more broadly than in healthcare. So, I think it, for the most part, avoids some of the healthcare jargon that we very easily get tied into, I think the potential here is that this could be quite useful. It’s a good look. It’s clean. It’s eye-catching. I think colour is used appropriately. Text quality is good. I like the graphic. ‘Together, let’s build a person-centred healthcare system.’ I like the graphic. I think they can broadly apply across government so that they can utilize it in their planning and thinking about their service delivery models.” GML#9 | “…the only thing I don’t like about this actually is this first paragraph, ‘these tools are for all persons that live with health challenges, including caregivers.’ I find that wording to be a little awkward. Like it’s not 100% entirely clear on what the ‘all persons’ mean. Also, I mean I think the intention there is, is it only for patient-reported? And it would be better off to say that QOL assessments could be used with any respondent type. But I think that QOL can be person- or patient-reported, just they can be used with any respondent I didn’t like about this one. I just found that a little bit confusing.” GML#7 “So, this is quite health-centric. I would suggest that you could change your tagline to, ‘Together, let’s build a person-centred provincial system’ – something that leaves the opportunity for this to be available and utilized more broadly than just in health.” GML#9 | Tweaked wording and graphics including added "data" to fact 1 after "patient reported"; Merged first 2 bullets into 1 bullet; Changed “groups” to “populations”; Made font size of "Quality of Life Assessments" larger and "Fact Sheet About" smaller in the title; Removed abbreviation from heading; Italicized introduction and bolded "older adults" and "family caregivers; Revised tagline for all documents to read “Together, let’s build a person-centred healthcare system for everyone.” |
Brochure: “Frequently Asked Questions (FAQs) about QOL Assessments” | ||
“So, for me and this office, it’s a good introductory tool. Its concepts are good. It certainly highlights the key aspects of how this office looks at quality of life and looks at the opportunities for monitoring, measuring, and comparing quality of life in the long-term care sector. I could see that this office would make reference to these materials and conversations with other sectors of government – for example, Ministry of Finance or Ministry of Transportation, etc. Ministry of Health, they kind of already get this and understand this part. But other aspects of government that are not as involved with frailty issues, this is a nice primer that helps them understand what we mean by quality of life as an example and why it matters for seniors and how it can be advantageous.” GML#9 | “Those who analyse and interpret these QOL assessment data must be experts in measurement. This [wording] may be a deterrent.” GML#7,8,9 and 10 “As a government leader, I’d be looking for the documents that informed this FAQ. So, I’d be wanting to see where the linkage is to the more fulsome documents that have informed the FAQ.” GML#9 | Moved "What are QOL assessments" to introduction; Removed "person reported" under the “Improve Quality” section; Changed words “or their" to "and" and “over" to "across" under the top right fact; Changed the font size in the title; Removed abbreviation from heading; Italicized introduction and bolded "older adults" and "family caregivers"; Replaced “must” to “need” in the sentence “Those who analyse and interpret these QOL assessment data need to be experts in measurement”; Added the link to the peer-reviewed bibliography |
All four participant groups | ||
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Exemplar quotes by participants: overall responses to the resource | Exemplar quotes by participants: suggested revisions | Revisions made to the KT resource |
Whiteboard video: “A Better Life: QOL Assessments” | ||
“Yes, her voice was succinct and clear., the general message was good. especially the ending. I liked the ending because say it’s… make it better for you. Yes, and to know that it is helpful and that there’s somebody working to try and make it easier for seniors as they approach a time of leaving this planet. It was everything that should be there. It was just the little bits of too fast. Other than that, it’s excellent.” PAC#2 “I think it got the general message across, again, as well – that’s improving quality of life and, briefly, why it’s so important. I think on the positive it was a short, short audio clip, which is good, I think it was clear enough.” HCP#8 | “My parents are just average 80-year-old people. We need to tidy up the language and make it simple and straightforward so that people can follow… People who are going to be interested in this information are going to be people who are under stress. Either it’ll be a family caregiver who’s stressed and trying to understand frailty in regard to their own family, it needs to be simple and straightforward. it’s not warm and engaging sounding. The person has a great voice. So, the voice is good, but the language is not warm and engaging. It’s not about sort of a conversation with someone, even though the second person isn’t there.” GML#9 “Okay, first of all, it’s way too fast, way too fast. There’s a lot of words that have… You noticed I had my head turning? I don’t have a hearing aid in my left ear, but I do in my right ear. In my right ear, a lot of that was… I would’ve needed to read along with it to get everything. Even from my left ear, there were words that I knew what they were only because I could anticipate what was going to be said. Yeah, that is much too fast, and if possible, bring it down just a little bit.” PAC#14 | Began video with an older adult living with frailty to make it more relational; Built QOL definition into the video; Improved the language including increasing frailty language and personalizing it through “our” and “we” language; Added a tagline "resource allocation" and changed tagline to "build a better healthcare system for everyone"; Decreased distracting qualities (for e.g., slowed down recording, muted colors and changed them to match other resources); Replaced house painting graphics with graphics suggesting preparing meals to make it more realistic |
Video: “A Better Life” | ||
“So, I’m a very visual person, and I think the movie, video clip just captured all. It was very real. It didn’t feel staged. We see this all the time in the community, and it just sent that message out very strongly and clearly that this is something that’s happening more often than we actually realize – caregiver burnout, caregivers are underappreciated, they’re not compensated for this, and that there is that potential. So, yeah, very powerful and relational. I thought it had a significant impact. It was just very attention catching I think the video would be good specially to get the buy-in amongst other clinicians. So, whether that be in a rounds or a team meeting sort of setting, initiate, maybe, that the video run at the start and perhaps then working with them to try and get them on board with either participating in these questionnaires or running them to better capture.” HCP#8 “It’s a narrative, so it’s not just a lesson or a lecture, yeah. It was pretty human. Yeah. I wouldn’t hesitate to use it or steer people to it. Yeah, and the facial language was clear and easy to understand, too. [laughs]I thought it was interesting that they would choose a father and a son. I mean, it’s absolutely legitimate, so there’s no reason why they wouldn’t, but it certainly is probably not the most common.” PAC#15 | “I assume the perky young lady is your doctor. We don’t know that for sure, but it looks like a doctor’s office and got the regulation stethoscope around her neck and so on. When the doctor was running through the list of the different kinds of areas that the QOL questionnaires cover, social wellbeing… Again, I think the average person on the street is going to say, ‘What?’” PAC#9 “I think it certainly gives you a hint, and as I said, it is only a short clip. But I wonder if sort of in that middle part if there couldn’t have been a little bit more explanatory… So, we looked at this and looked at this, and this is something that they seem to have in common and they both enjoyed, and so they opted to do this – you know, just that there was some thought process going on, not just you filled out this questionnaire and then we put it through some machine and came out and said, ‘This is what you need to do,’ right?” PAC#3 “I mean, it wasn’t offensive, but it wasn’t very realistic either. Because it just seemed so completely barren. Not even regular clutter, nothing like that. Just basically like a… like you just moved into a condo, but you didn’t even bring anything with you, yeah. Also, I’m thinking that maybe something more middle of the road, that there could be more discussion about oh, I didn’t realize that you were feeling so overburdened and that you needed a break, for example. Like, if there was some type of dialogue in it, that it might have been better.” HCP#10 | Changed title from "A Good Life" to "A Better Life"; Streamlined the video to capture and hold the attention of the audience all the way through; Shortened the introduction montage (toothbrush sequence); Fixed lip-synch errors and removed fist bump; Color-corrected the kitchen scene; Ensured the video setting made clear that the “perky young lady” is a doctor by adding a clinic like surroundings; Provided more details about the process especially visuals showing father-son communicating and completing QOL assessment tools together |