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why quality of life deserves a spot in every treatment plan

what does quality of life actually mean? and how do we define it when we cope with life’s challenges?

what does quality of life actually mean? and how do we define it when we cope with life’s challenges? 
quality of life needs to be a critical part of how doctors and patients approach health because of its profound mental and physical impact on overall well-being and condition management. getty images
what does quality of life actually mean? we think about it when we’re waking up january 1 and making resolutions for the new year (which may have fizzled by now). but how do we define it when we cope with life’s challenges? 
it’s a question that healthcare providers have weighed for decades alongside the hard outcomes of a treatment plan to prevent hospitalization and death. although quality of life as an outcome is not as prioritized in the decision-making framework for treatment, for the individual patient and family, quality of life may well be more relevant. 
dr. paul oh, an internal medicine specialist and scientist at the toronto rehabilitation institute, helps people on multiple medications manage their health and live happier lives—despite the challenges of feeling vulnerable, frail and uncertain. the job entails counselling people on drug therapy, coping with medication side effects and adopting lifestyle habits like getting more time on the treadmill. he genuinely wants to know how they’re doing overall.  
“i had a conversation with a person who is living with a chronic heart condition, so-called heart failure syndrome,” says oh. he is also medical director of the cardiovascular disease prevention and rehabilitation program at toronto’s university health network. in his clinical setting, he works with people with cardiovascular disease and chronic conditions. 
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“the impacts on a person’s life are profound, with fatigue, depression, sometimes inability to work. physical symptoms like shortness of breath or swelling, poor sleep, poor energy, challenges in work and recreation. maybe they also withdraw from the family environment and then there’s the specter of ‘i may land in hospital because i’ve got too much fluid in my chest or some other complication like a rhythm disturbance of my heart. or ultimately i may be facing mortality.’” 
when a patient like this is offered complex regimens of four, five or 15 different drugs, they are left with the question why? the healthcare practitioner says you’ve got to take this because this is going to keep you alive, but then questions come back from patients, like ‘i understand that could be important, but i don’t feel good on a day-to-day basis, and is that from the medicines that i’m taking or is it my  condition or is it something else?’ 
as oh points out, “there is this kind of balancing point of what are the drugs doing for me? how are they impacting me? are they actually making me feel better because that’s their experience on a day-to-day basis. do i feel good or don’t i feel good?” 
having that discussion is often missed during medical appointments because of the time restrictions when doctors need to get your blood pressure, weight and review bloodwork or other test results to evaluate how you’re doing.  
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quality of life is a critical part of prescription for health

that said, quality of life needs to be a critical part of how doctors and patients approach health because of its profound mental and physical impact on overall well-being and condition management. if we’re kicking ourselves about those long-lost new year’s resolutions, our reset should build on the small, daily things we can do to help us improve our quality of life, because that’s foundational for 2022年世界杯名单猜测.  
if you work in rehabilitation, quality of life as a defining factor becomes more crystalized when you see people with chronic pain who want to be active and strong enough to carry a bag of groceries or a toddler.  
“the stakes are real, the tangible outcomes are real because we put ourselves in the position of our patients and say, ‘is this the right decision or not?’ and then we can see these things go into action. so that’s really important,” oh says of how quality of life is affected by treatment therapies. 
“absolutely every person whom i see is on medications and most are on multiple medications. the mean number would be five, although i met someone today who was on 18 different medications. this is a part of life, especially as we get older.”  
 dr. paul oh, medical director of the cardiovascular disease prevention and rehabilitation program at toronto’s university health network.
dr. paul oh, medical director of the cardiovascular disease prevention and rehabilitation program at toronto’s university health network. supplied
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statistics canada and other organizations tell us that the number of chronic conditions increases as we age. the norm for older adults is that we’ll live with three conditions at least, which means that medications are part of people’s health plan alongside important lifestyle interventions. 
so, the purpose of medications is a good question. when it’s viewed from a scientific trial framework lens, the aim is to identify if a drug reduces a serious medical outcome. hospitalization, a medical health event or death are important metrics that reveal whether a specific drug is important and has value. 
there are, however, many other therapies where the impact is more about how we feel physically and psychologically and allows us to function more on a day-to-day basis in our social roles at home or ability to work. those impacts are not well captured by ‘are you in hospital or not?’ for chronic conditions that last years or a lifetime, the functional, psychological, social and environmental domains arguably are more significant for that individual, oh says. “we tend not to do that unless we have some sort of research or rigorous quality framework that that we’re measuring.”  

virtual tools and wearables encourage self-responsibility for quality of life

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so, how do you monitor quality of life in a way that can be incorporated into brief medical appointments with your gp or specialist?  
one solution that’s gaining recognition is using technology that is patient-centred and simple to use.  
“sometimes we have lab tests that we can look at, or we know that you haven’t been in hospital in a few months, so we’re probably doing ok. but the real metric is around quality of life. we don’t do it explicitly. but i think if we did uncover it more fully, especially if people have something they can track and report on they can start to measure these things today.” you can measure how you feel today and then at the next time point and see your progress. if you start a new therapy, you can also assess it for yourself,” oh says.  
“then if you share that with your healthcare practitioners there is something we can track together.” 
along those same lines, oh chairs the expert committee of practicing physicians and pharmacists who reviews new prescription drugs for the reformulary group, a toronto company that curates a list of medications called the reformulary. the list is available for canadian companies and organizations to use as their drug plan. 
the company also has a metrics platform with surveys on quality of life and productivity that measure key health metrics. users can use the surveys and then generate reports on quality of life impact and progress to see how different therapies are affecting them.  
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oh says the survey tool is one example that reflects the movement for people to take responsibility for their own health—a positive trend reinforced by the growing number of health-related apps and wearable devices on the market. he conducts research that’s funded by apple, where his team has distributed more than 1,300 apple watches to people living with heart conditions for tracking, measurement and monitoring.  
“there’s great value in the data about people’s personal activities which i think is really important. we don’t have insights into that kind of activity or those health data points without something like these devices,” he says. 
“lots of folks have told me spontaneously,  ‘i use my device and then i get information from it and then i change my behaviour as a result.’” 
when people have a daily goal, they tend to embrace it because it wasn’t given to them by someone else, thinking ‘if i said it, then i’ll do it.’ so tracking mechanisms can go a long way to spark motivation. for a person with heart failure who’s on many medications and has challenges with quality of life on a daily basis, these devices can now tell what’s going on with their health even before they know it. the digital system becomes a health champion, noting if the patient is less active, vital signs are going out of whack or body weight is going up, for instance. it can signal the patient to see their healthcare provider to avoid an impending heart issue that could mean hospitalization or worse.  
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the next evolution is integrating wearable devices, your blood pressure cuff, your blood sugar meter and quality of life metrics all into the same place—the person’s digital health record. this is critical data at your fingertips, oh says.  
“we can gather the intelligence that makes our encounters with patients that much better. and the patient can actually see what’s going on and then share that with practitioners. that would be amazing, and there’s a lot of interest in this in hospitals.” 
karen hawthorne
karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

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