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SCI Care: What Really Matters
SCI Care: What Really Matters
What Influences Quality of Life During Inpatient Rehabilitation Early After Spinal Cord Injury?
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Hello everybody and welcome to this webinar today hosted by the ISCAS Quality of Life Special Interest Group. Just a little bit about the SIG before we get started today. My name is Dr Kimberly Mondin and I am vice chair of the SIG, along with Marcel Post. The overall aim of our SIG is to conduct a forum designed to educate members, discuss information about how quality of life outcomes can be used in research and practice and encourage collaboration. The objectives of the SIG are to improve knowledge and education about quality of life research among ISCOS members, promote a clear definition and measurement of quality of life related to SDI, encourage collaboration activities among members, discuss comparative and cross-cultural perspectives in quality of life and discuss the role of quality of life in STI-related trials. The title of our webinar today is what Influences Quality of Life During Inpatient Rehabilitation Early After Spinal Cord Injury Insights from Patients' Perspectives. Our presenters are Anka Shields-Sailor and Maren Westfall.
Speaker 1:Anca currently works as a head physician at a large rehab clinic for musculoskeletal rehabilitation near Bern in Switzerland, associated with the University of Bern, she lectures also at the University of Lucerne. She was head physician at the Swiss Paraplegic Center until 2023. Her research focused on the implementation of patient-centered and ICF-based rehabilitation for people with spinal cord injury. She has dealt with the topic of quality of life both as part of the Swiss Ski Cohort Study as lived experience and as part of quality management to improve the treatment of people with spinal cord injury. She authored or co-authored about 100 articles. Since several years she was a member of the Quality of Life Special Interest Group of ISCAS, and our next presenter is Maren Westfall, who is an Associate Professor of Psychology at Pace University. She's a licensed psychologist and conducts research on resilience, emotion regulation, mindfulness, self-compassion and quality of life in spinal cord injury.
Speaker 2:So, without further, ado I will hand it over to our presenters. Thanks a lot, kim, for the nice introduction and for the invitation to present this topic and somehow results from a qualitative study we conducted. So the topic is what influences quality of life during inpatient rehabilitation early after spinal cord injury and then insights from patients' perspectives Next slide. Yes, we declare no conflict of interest and perhaps what's important, when we are talking, marin and Anke and me, we are just here representing a group of collaborators and I think the group of collaborators is important to realize how many perspectives also looked at the conception of the study, at the results, the interpretation, and are ongoing for the second publication about the study. So my perspective is coming from the Swiss Paraplegic Center. So as a clinician that related really to the research, paraplegic Centre. So as a clinician that related really to the research, paraplegic research and what's important, that besides the collaboration with Marvin as a psychologist, we have Marcel Post on board in this project. We also have Sarah Rubinelli and she's a specialist for communication in healthcare. We also have Sarah Rubinelli and she's a specialist for communication in healthcare. We have this nice collaboration with people coming from different perspectives and disciplines to understand a patient's perspective. Yes, next slide slide. So what we are talking about now and sum up what we realized and worked with is the concept of quality of life during post-acute phase. So we like to wrap up some background information that we are more or less on the same level, and then I will present the study design and the setting, and then I will present some first results of what the participants, how they describe their concept of quality of life during this phase, and then we will especially a new focus on the environmental influence on quality of life during these early post-acute phase and finally, we have some idea about the lessons we learned and the clinical implications. And then we are really interested whether you have some questions or whether you have some feedback or some recommendation how to proceed. So when we start about talking about quality of life, as we mentioned, we always find a lot of literature from Marcel Post and I really like these publication. Um, and this is now from two, it's about nearly 10 years old, and marcel always said, okay, we are talking about quality of life.
Speaker 2:As I understood a long time, it's really complicated. We can, highly sophisticated, have some concepts, but the most important is that we perhaps pick up out of all these concepts, the relevant factors, and then make it feasible also in the clinical work. And he had the permission to present Diker's model of quality of life. You see it on the left side. And what's important is when we talk about quality of life we have these subjective evaluation and reaction. You see subjective well-being, life satisfaction, self-esteem, negative positive effects, happiness. So all what's well-being, life satisfaction, self-esteem, negative positive effects, happiness. So all what's partly being a feeling in this concept of quality of life. And then we also have these objective evaluation that we can refer to disability, adjusted life years and quality adjusted life years, life years and quality adjusted life years. So, and these all leads to an achievement with the status, performance, relationship characteristics. What's important in this concept and this goes back to 2005, that the healthcare system had to agree to integrate the really subjective perspective.
Speaker 2:Quality of life remains always a subjective perspective and when I started in my studies it was often the topic don't do anything about quality of life, we can't influence it and every patient is different. So it was really like a no-go. And when you look at the right side and the Wilson and clearly model of quality of life, you already see that 1995, there were some aspects and you will recognize these aspects as part of the quality of life, also in nowadays. So the old models are still relevant and are still working. So what? Wilson and Clary already said that there are characteristics in the individual. Yeah, that's right. There are characteristics of the environment and then these all influences the biological function, the symptoms, the functional state, the general health and the overall quality of life. So we are talking already 30 years about the same topics.
Speaker 2:Yes, the next slide. And then Marcel said what do we have to do when we're really talking about quality of life and how can we proceed to implement it even more intensive? To implement it even more intensive when we see at all the publications that are now done and include quality of life scales and feedback from patients, we see that it's really increasingly. You can't more or less plan any study without the subjective perspective and therefore what he said is that the most important is that we understand the concept. So physical, psychological, social, well-being factors and that affect the quality of life of persons. That's not like the quality of life.
Speaker 2:The quality of life is a more comprehensive concept, perhaps not really describable, but there are factors and there are patients talk about this topic and they can describe it. And then when we say the what, what we really want to describe overall for everybody, then he remains and picks up, based on the scoping review that it has to include physical health, mental health, everyday functioning in social activities, everyday functioning in role activities and general perception of well-being. So all these concepts that are broad everyday functioning in role activities and general perception of well-being. So all these concepts that are broad, but the same concepts appearing in all the other concepts that were published long ago. And then what's also important to understand is how measures of experience are called subjective because they rely completely on self-report. We can't judge and say he like or he might be not satisfied with his life because we don't understand it.
Speaker 2:The concept how patients or participants really experience their quality of life might be completely in line with what we expect or contrary. So the main milestones that were also the initial point for our research or for the quality management development we have to say is that we have to expect that the patient's perspective is versus the healthcare professional's perspective and that they have to talk to each other and the healthcare professional's perspective have to accept that it might be completely different and that the patients are the experts for their subjective experience. So this was the reason how we proceeded and what we then addressed was, you know, the international project, and we come back to this concept that quality of life is more or less studied a lot in the chronic phase and increasingly we have more data about quality of life and the judgment and the description of quality during the acute phase. When we talk about the acute phase and the former physicians, they really respected and said no, don't ask any patients about their quality of life in the acute phase, because they are in a shock phase, they can't say anything, don't touch them and motivate them.
Speaker 2:Perhaps one slide back shortly, because you see that in the acute phase there is a discrepancy. The healthcare professionals are really experts and we know what to do and often in the acute phase patients can't really decide anything because they have a lot of painkiller. They are completely in in a new situation. The spinal cord makes a trouble with everything. You lost half or more parts of your body, so you are really in a crazy phase without any safety and all the decision capacity might be different and all the perception also, but increasingly directly, as soon as you are awakened, you have to be in the rehabilitation and when you see how individualized rehabilitation phases, immediately we have to adapt all the intervention to the personal perspective and include patients and program the rehabilitation somehow from our perspective as experts, but increasingly with their participation goals.
Speaker 2:And this also led to the guidelines. That in the guidelines and this is a guideline we are using in the German speaking part In the guidelines and this is a guideline we are using in the German-speaking part and we established an overview and you recognize that the topics in this toolkit are similar to topics in the toolkit also in the American parts. So you see that in collaboration and based on knowledge of the cohort studies and everything else, we included quality of life as an essential outcome parameter from the rehabilitation functioning improvement, not only on caring for complication and health situation, but it's also focusing on and trying to achieve the best quality of life at the end of the initial rehabilitation. What we also did is in our cohort study, as well as in several cohort studies, we are using the SCI quality of life data set and this data set is an excellent one, and here I presented the version 2.0.
Speaker 2:And you know that these are really simple questions and when I started to think about asking the patients about these questions. I always had the impression they can't answer. It's too complicated and they will find a number to judge it. But when you do it, astonishingly, they will answer. We did it in a verbal version, but they are also answering in a paper-based version so you can use these SCI quality of life data set. It's short, there are data, it's validated, so it's really really interesting and it's just, and you see it also, it's a quality of life data set, but the question is about satisfaction of and with. So it's like whoa, we are dealing with all these concepts and the patient have to understand yes, but that's a quality of life data set.
Speaker 2:So what we did is we wanted to describe quality of life from the point of view of patients in the post-acute phase, in the inpatient settings patients in the post-acute phase, in the inpatient settings and we had the specific aim to identify what patients experience as their quality of life. And the second aim was to identify how environmental factors influence quality of life. When you think about the questions that are already integrated in the data set, you see that there is a social question for general physical, psychological and social quality of life, but the environmental aspect is still missing. So we had the idea to combine in a first step how patients talk and experience this quality of life and then to add another aspect about the environmental factors, because you remember, in the old quality of life models environmental factors were already mentioned and in the ICF they are also integrated. So we performed semi-structured interviews with 20 patients at least three months after the onset of SCI and at least two weeks before discharge, and then audiotaped verbatim, transcribed qualitative content analysis, coding with MaxQ data, and the content analysis and the coding was performed through two independent researchers, one experienced psychologist and one health scientist, and then when it wasn't clear, it was discussed in the author group. Finally, you know there are more male than female, so we had somehow a representative but, yes, male dominated interviews. It was German speaking due to the analysis of the scientists. Also, we had somehow a nice age group, so between 16 and 13, but also above 79, so somehow representative.
Speaker 2:Over the life we had a little bit more traumatic than non-traumatic and we really intended to have the same tetraplegic and paraplegic amount, no acute health care condition and so on. So what they described and this was somehow also a nice and surprising result and many of the quotations focused on satisfying a function with social life. So for me, quality of life means a good mutual understanding in the family, with the children in general, maybe going on vacation or just a little bit of well-being in the family or just those things. So they were already at the end of their first rehabilitation. Really thinking about life is going on and this is the most important, but for sure.
Speaker 2:The second concept and there were a lot of topics that influenced their quality of life was the health. Of course health is important. That's clear. The quality of life begins with health. If you are not healthy, it's no longer the same, and I will explain and bring some examples for this topic. And what was really surprising, what we detected as a new aspect and we didn't believe it at the beginning was that they said freedom, freedom that can you, that you can enjoy. So, for example, quality of life for me is being able to decide for myself what I do or don't do in my daily life. And this was something that we said OK, when freedom is so relevant and when they experience it. But because we ask them, what are the influencing factors or what can influence your quality of life, and then they decided, yes, when I can decide this or this or this and this, this helps me to really build up my identity. So when we go for these topics shortly, to summarize is that they also presented and then you can imagine and that's worldwide, it's not specifically in our center. You find a lot of publications about these topics.
Speaker 2:Social life includes family, friends, patients, but also the therapeutic team. I learned that in former times I had the impression that I'm really important for the patients, but I realized family is more important. So it's like, yes, we are there, but we are on the fourth place more or less, and all the others are so important. Enable patients to have social experience and this will help to adapt, to develop satisfaction. And yes, in the health, you also know that progress through therapies. And then there are the healthcare professional strengths and energy they really mentioned. As soon as I realize that I do some progresses in anything I learn to do, and then it might be to guide my powered wheelchair, to do a transfer a little bit more independently, just enjoy and respect that all these progresses are excellent and important for them.
Speaker 2:Psychological well-being they really said that motivation. Psychological well-being is important and therefore it's also, in fact, perhaps, that we can influence and that we should focus also during initial rehabilitation. And then, yes, this topic was freedom. And then you see also that the factors are related a little bit to the psychological well-being. So, the positive attitude, motivation, the independence, autonomy, self-confidence, freedom, this is all something we can strengthen because most of many, nearly all of our patients mention this. Most of many, nearly all of our patients mentioned this.
Speaker 2:And then, to summarize, we see that there are negative influences and, yes, the interviews were conducted during the COVID and, yes, this influenced also perhaps the meaning of the social contact, but I think there are a lot of results that can be transferred also to the others. And then, yes, psychological stress, loss of low motivation, loss of strength, physical complications, pain these all influence negatively. We know this. And concerning the freedom aspects, loss of control, dependency and, as we say, hilflosigkeit is something that they really experience as negatively. Social life, health and feeling of freedom influences quality of life. At the end of first rehabilitation, and although quality of life remains an individual experience, patients can answer these standardized quality of life data sets and we will see some concrete results soon. And we will see some concrete results soon. So what we had the impression is that combining these individualized evaluation with the standardized reporting can help to understand and stimulate the understanding of our patients and then also individualize the rehabilitation. So this is the first step, and now I hand over to the environmental factors.
Speaker 3:Thank you, anthe. I'm pleased to report on the second part of this research, which focused on environmental factors, of this research, which focused on environmental factors. So we know from the literature that there are numerous qualitative studies that have shown that environmental factors that help or hinder autonomy and social participation have an important influence on quality of life and chronic spell for injury, disease, and that some of these environmental factors are what we tend to think of if we think about quality of life, which is environmental factors and quality of life, and those include accessible structures, support relationships, assistive devices, but they also extend to individual and societal attitudes. That, in the World Health Organization, is considered the physical, social and attitudinal environment in which people live and conduct their lives. So we see here that environment is quite broad, similar to quality of life being a broad concept, and we really have to look at environmental factors to understand how people, after spinal cord injury, what might influence their ability to adapt to these very sudden major changes in their physical functioning and independence and also start interacting with others and grapple with that new identity as somebody with a physical disability. And so therefore, it's important to know about these environmental factors during this sensitive phase, because this knowledge can help us better address their needs and to help optimize their rehabilitation outcomes.
Speaker 3:So in the second aim of the study that we're presenting, we wanted to look at these incremental factors that can influence quality of life in people with newly-advised lung injury, and so we were bringing together and looking at the quality of life basic data set questions, the quality of life basic data set questions, but then also introducing an additional question, exploratory question really, about their experience, their satisfaction with their current situation here in this rehabilitation center, and then we followed that up with an open-ended question inviting them to provide more details about why they picked a value. So, with zero not satisfied at all and 10 being completely satisfied, why they answered in the way that they did, just to give you the quantitative results, which is not the main focus of this most qualitative study, but it's still important to look at in terms of giving you an idea of what their mean values are. So you can see that satisfaction with life in general has a mean value of 7.2. Is at a has a mean value of 7.2. Satisfaction with physical health um lower, but still um surprisingly high given the severity of um, the physical impact of the spinal cord injury and the satisfaction with psychological health also relatively high. But what was really striking is how um strongly satisfied people actually were with their social life and with their rehabilitation environment. So we see the two um uh, almost indistinguishable and uh, just to note that the satisfaction with rehabilitation environment was really.
Speaker 3:That was our additional, our exploratory question, not one that is already used in a quality of life data set in any routine way. For us, we considered this to be an important prompt and how clients answered, how our participants answered, that was really the focus of this investigation, was really the focus of this investigation. I would like to say something about how these findings. For those of you who are not as familiar with this research on self-reported quality of life, this actually is comparable to how people with spinal cord injury have responded to questions about quality of life. So, contrary to what some people would think, that after spinal cord injury a person has lower quality of life actually the majority of people do report levels of quality of life that are comparable to those without the injury and, as a researcher who has conducted research in resilience in people from exposed populations, it really converges with the findings that, despite exposure to very severe life events, still, most people actually carry on with their lives and do well and start acting and coping with their lives as is, and so these results converge with those findings.
Speaker 3:Now, in the quality of life study, we basically passed out two main factors which emerged from the qualitative analysis of the data, and really so what kept coming up in respondents' answers is that interpersonal factors were critical to their quality of life as related to the environment, and so interpersonal factors were broken down into qualities, attitudes, behaviors about the health care providers on the one hand, and then also the extent to which the institutional culture of the rehabilitation center was person-centered, and then, to the right, the physical environment and structural sensory was the other major aspect, and the one that again was people who think environmental factor might think about those, but, as we are showing here, the interpersonal effect of the interpersonal environment has a very important impact on how people experience their rehabilitation process, such as being transparent, trustworthy, sent to, which patients perceive the healthcare providers as having an interest in their lives, being empathic and also optimistic, motivating, encouraging and then also treating the individual, and I will give quotes in just a minute that illustrate these points, but basically having healthcare providers that are attentive and respectful and kind really led to greater environment-related quality of life. And also a sense of humor was mentioned by several respondents as factoring into their quality of life and explaining their high ratings that we saw earlier. Now there was also an emphasis on flexibility and being tough but also being considerate, so not having low expectations, trying to motivate and push the person to what they could still do within the limitations of the physical disability and also of the health care provider, to be a source of information to the patient that will consider it measured and informed, but also sort of a sense of being able to deal with the situation as it. So those are the healthcare providers attributes, attitudes and behaviors. And then, in terms of the second part, of the interpersonal factors that are part of the environment-related quality of life, what was really apparent was the importance of an individualized approach so there's the overlap here to healthcare providers.
Speaker 3:Individualized approach. So there's the overlap here to healthcare providers attributes, attitudes and behaviors, where this is also encouraged by the rehabilitation center and it's encouraged in as far as as part of the treatment interventions, there's an emphasis on patient involvement, so that client patients are encouraged to participate, take an active role in the planning and decision making and setting their routines up for the day, for the weeks. So really doing this with involvement of the clients and also including family members and friends in the rehabilitation process. Including family members and friends in the rehabilitation process. So really tying in with what Ankur presented earlier. If we think about quality of life, we need to also consider the social domains of quality of life, since that's such an important part and one that is reflected in the addition of quality of life, a BDS data set question on the person's satisfaction with the social life. Now, in terms of the physical environment and certain structural sensory aspects of it, a positive influence on quality of life was wheelchair accessibility. We think rehabilitation centers would be completely wheelchair accessible, but there were some responses that really made it clear that some concrete features might get in the way, whereas others really helped to encourage the sense of freedom that Anka presented earlier as being a central part of patients understanding and the way they define quality of life. So wheelchair accessibility, beautiful landscape, also factors such as food quality, cleanliness and accommodations.
Speaker 3:And then a major negative influence on people's quality of life was understaffing. A major negative influence on people's quality of life was understaffing, noise and lack of privacy. Now I'll present a particularly compelling quote that illustrates the impact of noise on patients' quality of life. So looking first at the attributes of health care providers, so this is one representative quote from one of the participants that's an incredibly upbeat person. He has no idea how much he meant to me in that difficult situation. It was never negative. He always treated me with a glass half full, not trying to be always sure he's right in case things don't turn out well, but with honesty, encouraging me to try to fight in a positive way. So what this quote really shows is a health care provider who encourages and conveys and really stimulates resilience, in essence, so to move ahead and cope with the situation that's in.
Speaker 3:And another example here you can ask him anything. He's always generous with his answers. He doesn't give answers in passing, he stands there and takes his time to answer, and that is very nice. That's quality form. Another one it's very important that you're treated in this way as me with my injury, not compared to others, because that simply doesn't help and because everyone is so different.
Speaker 3:Now some examples here of patient-centered institutional culture. And, as I said earlier, they really interact with each other. They're part of this interpersonal domain. So one what helped me most was the opportunity to have a say in certain areas that affect recovery, being able to express what is important to me. And then one example for um, the impact of, or the importance of, the health care providers and the institute as being really a safe space and one that encourages um a forward thinking mindset. So actually, the atmosphere in this building is generally very positive. It's not a classic hospital, it's a rehabilitation center with lots of positive thinking people. As long as I'm here, I'm pretty happy because we're still in a protected space, having people around you where you don't have to worry that something would happen if someone comes straight away.
Speaker 3:And then, finally, the importance of a rehabilitation center to really prepare the person for what happens next. And so here's the quote. I received information. Here's what to expect at home. Here are some things that you can do when you're at home. This is good because then I know about some possibilities for what might happen, and I'm not falling into it before might happen, and I'm not falling into before.
Speaker 3:Now I'm going to move into some examples of codes regarding the physical environment and specifically the structural and sensory aspects of the physical environment. So in this particular. So the rehabilitation center that we, where we interviewed clients, is not well in Switzerland and so if you were there you would see what the environment looks like. But basically I'll just read in the interest of time real quick it's great that there is a hotel nearby where you can experience a bit of normality as opposed to everyday hospital life, a neutral place where I can experience some peace and seclusion after three months. I'm really looking forward to it.
Speaker 3:And I just wanted to add something to this, which is so in a lot of rehabilitation hospitals. We know that there are rooms or the centers help to provide some information to significant others to stay nearby, but in this particular rehabilitation center it's Nextotel, so that really not only provides family members with an opportunity to interact with the you know, the family members with the new disability but also really to be to go someplace where you are. You can experience yourself outside of that clinical settings that many people spend up to nine months or even longer in some cases. So that's really important. That's part of the impact on environment-related quality of life. And then here is an example that illustrates well what Andy said earlier in terms of the freedom aspect of quality of life, how respondents saw their quality of life as merely being one that allows them to have maximum freedom. So, knowing that I can go anywhere on this side with my wheelchair, having the freedom to race around and having a certain degree of self-determination without any obstacles, I think that is very important for the beginning, as a part of paycheck, that you are not restricted in this way, and here is an example of something that was received as a negative influence. So the noise level you must put up with here is enormous.
Speaker 3:At the beginning, I had a hypersensitive phase. Every knock on the door sounded like the gunshot or doors opening. Suddenly like crazy, there was a door outside the building, a metal door, which opened and closed at irregular intervals from five to seven in the morning. At the beginning, I would just wait for the banging to start again for two hours. It was like torture. There are things you notice as a patient that employees can't imagine and that you wouldn't logically know they need to communicate. I think it's incredibly important to know these things.
Speaker 3:I want to add to this so, which was not mentioned at the beginning, but I'm a person with lived experience of spinal cord injury and this quote when I was analyzing the data just popped out at me and it's like, oh my God, this is so true. It's a long quote, but I do think this really speaks to the importance of the environment. Yes, the medical factors and the emphasis on medicine, and it's important that so is these early experiences where you are vulnerable and exposed to this and not in your regular home setting, and so that is an important aspect here of quality of life that is really reflected in this probe. And then the opposite of this and the positive aspects of the structural, sensory aspects of the physical environment. So just the view from the terrace at the back where you look over the lake, I find that incredibly calming. It's really beautiful and even wheelchair users can feel happy there.
Speaker 3:Another one I spend a lot of time in the room of silence down there just reflecting. I sit there and suddenly thoughts come to me. What do I still want to say to my wife? What is important, what is not important? And just to put this into context.
Speaker 3:So I said earlier, this comes from a research study conducted in Switzerland. I've been there multiple times now and it's really beautiful. I mean, you can see the mountains but there is also a movement towards recognizing the importance of these environmental factors on people's individual process of rehabilitation. So actually, here, what you see, to the right, there is a new garden that was privately funded in the US, everything, things like this are privately funded from donations. So this is a meditation garden that is going to be open at the end of May in Berkeley Meditation in Upstate New York, and so this just attests to the fact that there is a growing attention paid to the importance of having opportunities for patients to have these rooms for reflection that we see from the quotes that I just showed you and read to you, that are actually pretty important for the person's coping process.
Speaker 3:And so, just to summarize, so what we found in this research, in this qualitative study, really converges with research that has documented the rest and reflection and a sense of normality as depicted by our participants. But it's not the main focus of the study. It's also the similarities that we saw in the ratings for the environment-related quality of life question that we added to the standardized to the part of our measures for quality of life related to social relationships. So this strong similarity points to the importance of the healthcare providers being sensitive to the needs of individuals with spinal cord injury during post-op acute phase. So healthcare providers do matter and although, anka, you said that you know you realize that family is incredibly important Of course it is, but how the healthcare providers interact with the patients in the rehabilitation center clearly also has an important impact on quality of life.
Speaker 3:So, leading into the discussion in the Q&A to follow so some of these attitudes, personal qualities and behaviors that I just described as important for quality of life in the rehabilitation setting they do map onto individualized and patient-centered care that are in the literature have been shown to be quite essential for creating a working alliance and also sense of partnership, both in the rehabilitation setting and also, more broadly, the general medical setting. So the questions for further research and also our invitation to maybe start the conversation that you and I is how do we improve healthcare providers' attitudes and communication skills and behaviors? Clearly we see they're important, but what do we do to improve them? How can we promote a person-centered institutional culture? And what can we do to optimize the built environment? And then, what are the implications of measuring rehabilitation outcomes when we look at, when we think about, the role of the environment? So that's it for the slides portion. Thank you for your attention.
Speaker 1:Thank you so much. We have a couple. Well, we have one comment and one question in the Q&A. I'll start with the comment. So one of the participants said in the acute phase, I think rehab facilities, pain, physical social support, associated complications, including bowel and bladder complications, pressure sores, pain, family support, respiratory complications mainly affect quality of life, whereas in post-rehabilitation community dwelling, SCI, survivors, geography, environmental factors, availability of appliances, mobility, aid and jobs availability usually contribute to high quality of life. Any thoughts on that?
Speaker 2:Yes, yes, I think it's not necessary to argue about what's more important and for sure, when patients develop pressure injury and have to lay improvement and also this study is part of a continuous quality improvement is also integrated in how to reduce pressure injury incidence, how to optimize pain management.
Speaker 2:This is all in a whole concept. You can't see quality of life and what we presented isolated and therefore this presentation of the outcome parameter according to the guideline are also related in all the other processes that are ongoing. But nevertheless, I think one important factor is how you can care for the healthcare professionals to be motivated humor with humor, with stimulating, with individualized approach, just perhaps also suffering together with the patient, but having an idea, motivated, motivating. So it's not easy to influence attitude of healthcare professionals because you have to respect and help them to accompany all these other complications that can occur. And then you can perhaps also stimulate self-determination and engagement, self-management in the patient, and this influences already during the inpatient stay. So it's not one or the other, but it might be interesting to increase quality by integrating also these aspects a little bit more, not only.
Speaker 1:And then several people have been asking questions about whether this will be available by our recording. So we have recorded this webinar today and we will ask ISCAS to send it out to registrants, just so people are aware. And then also we have had several people from Australia, new Zealand who this is not a great time. If you have any colleagues with questions in those areas, we will be sending. Iscas will be sending the link out pretty widely. So thank you for your interest. The next question is how do the results of the PSYQUAL, the quality of life basic data set, change when looking at clinical characteristics like complete versus incomplete injuries or high versus low level?
Speaker 2:we know it's, it's just an attitude and um, the the most important is um, whether you talk, whether you talk to people with incomplete or complete, with tetraplegia or paraplegic, these are all individuals and they also all have to be listened and they can all talk about their experience, quality of life. I experienced, and I studied a little bit, people with an incomplete, para and tetraplegia and often they were under respected and under listened. Everybody said, oh, you can walk, don't worry. But they suffered from a changed body image, they suffered from pain and everybody said you can be lucky, you can walk.
Speaker 2:But this is not an attitude that really helps the patients. It's like I also accompanied patients with a complete C5 and they said I'm fine, I'm arranged and I learned this. So it's not directly and only related to body or patient characteristics. There are some association and, yes, pain negatively influences all the quality of life, that's no doubt. But the most important is we don't know where and how the patient is and we have to listen and stimulate in the communication that we can accompany him or her wherever she or he is.
Speaker 3:I just wanted to. Yeah, so we did, anke and I. We collaborated on three papers together where we validated, and also Marcel Post, among others, where we looked at quality of life and looked to validate the quality of life based data set in the acute, in the post-acute phase, and what we saw basically was that the levels of injury, level of impairment, were not the most important factors, whereas pain was really really important one. On the other hand, in the last study that we did, where we actually looked at the reciprocal influence of pain and quality of life using more complicated, sophisticated statistical modeling, what that really showed that there was not this interaction and but that really gives us pause and think there is something else going on. So quality of life and pain, at least in this very early phase, is not the key part. What else is happening? And that's really what got us curious and what speaks to the importance of taking a broader perspective on quality of life in this early phase. Yeah, yeah.
Speaker 2:And I just want to mention you know that, see how many times do you have to educate whom for what? So it's a continuous education in all these aspects that were mentioned bladder management, bowel management, skin management, everything. And in this communication, training, there was a focus of just giving skills to enable for self-management. And in these communication it's not so difficult. You just have to give structured information. You can learn it. You have to respect or deal with emotions. So having some skills how to integrate emotions, because, because it also helps for health, health care professionals to have enough energy to adapt all these treatment also in an individualized way. And, yes, and the mindfulness is also a way how to help everybody I I wanted, would you mind?
Speaker 1:sharing. Would you mind sharing your slide with your email, because there's several questions in the chat that I don't think we'll get to in the last three minutes, so then people could email you?
Speaker 3:Sure, I'm looking at the email and I actually have a question.
Speaker 2:Yeah, perfect In every case. We are really happy for all the interest.
Speaker 3:Yeah, we're so excited how many people chose to attend.
Speaker 3:I just saw the question pop up by Mr Zabah if I pronounce this, abdul Zabah and he's saying in Bangladesh, patients always fight for physical recovery rather than other health issues related to life and so how to improve quality of life.
Speaker 3:So I wanted to tie my answer back to what Anca said about burnout in healthcare providers.
Speaker 3:So one really important aspect of quality of life is others, but to the extent that the healthcare professionals bring in and take efforts to really include other clients and have the patients connect with each other, that's a really important aspect here, and we didn't show all the qualitative data from the first part of the study as much, but there was really sharing in some of the quotes patients talking about the importance of having buddies.
Speaker 3:And so the most important part really, when you have patients in this rehabilitation setting yes, the physical recovery, but then also having a perspective and having exposure to and hearing about the experiences of people that have come back into the rehabilitation setting and now with Zoom and with support groups, to get a perspective and see that you can have good quality of life after you get discharged I think that's a burning question and to the extent that healthcare professionals can really take an active role in connecting current and former patients, that can make that contribution even when people are in survival mode and clearly most of the resources have to be directed towards physical recovery, as mentioned.
Speaker 1:Thank you so much. We are out of time today. Thank you so much for everybody's interest in this webinar. I apologize to those whose questions we couldn't answer, but I hope you reach out to the speakers by email if you have any burning questions. Like the presenters are willing to share their slides, so if you wouldn't mind sharing them with me, then I'll share them with ISCLAS and then they can send them out to all of the participants. So thank you everybody for joining today and have a fabulous rest of your day, thank you. Thank you to our speakers again. Thank you.