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the missing measurement: how emerging tools and strategies unlock better quality of life
8 minute read
the goal of rehabilitation is giving patients control over their pain, disability or disease with education and support.
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defining quality of life can be a challenge at the best of times. one person’s outlook on good quality could be not so great for someone else. and if you’re living with chronic pain, it becomes that much more difficult at any given point in your life.
science shows that boosting your outlook starts with knowing what’s causing your pain, like bursitis in your hip, gastrointestinal issues or arthritis in your joints. a diagnosis or identifying a cause can be the beginning of being able to manage it and carry on with your daily activities. but if you don’t know what’s causing your pain, that unknown and uncertainty can put your quality of life into a tailspin.
quality of life improves when you have control over your health
for dr. andrea furlan, pain expert and physician at the university health network’s toronto rehabilitation institute, improving quality of life is central to her work. the term is becoming more widely talked about by practitioners and patient associations who are looking at quality of life alongside treatment advances. in her specialty of physiatry, which is physical medicine and rehabilitation, quality of life has been foundational for rehab for decades. intervention programs start with empathy, listening to patient concerns, and move to education and tools to have control over their physical and mental health and healing.
in fact, physiatry became prominent when veterans returned after world war 1 with physical disabilities and mental health issues. many couldn’t work because of these health setbacks and there was an overwhelming need for treatment and care. a lot of the rehabilitation focus back then and today surrounds the patient’s perception and ability to manage pain.
“quality of life is a concept that is very complicated to define because it varies from cultures, gender, phases of life. for patients, it depends on their health, their body, but also their mental health that depends on how much access they have to information and knowledge about what’s happening with them and access to care,” furlan explains. “it’s very subjective.”
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someone who has a minimal impairment like a painful toe might say that their quality of life is terrible. while another person who has physical disabilities, has gone through many surgeries and uses devices to help them walk or is in a wheelchair, says their quality of life is amazing.
“whatever the person perceives their quality of life – if they say ‘my life is terrible’ – that impacts the healthcare organization. and pain, which is my area, like chronic pain, is one of the biggest drivers of healthcare utilization because people don’t know what’s happening. it creates this confusion which we then translate as poor quality of life. and we hear people say, ‘i don’t want to live anymore’ or ‘why should i live like this?’”
pain is the ‘invisible’ impairment that others don’t recognize
it becomes even more difficult for people who don’t appear to be ill on the outside and their pain is dismissed by others as all in their head. the first thing furlan teaches her resident medical students is the approach to patients is always about listening so their concerns and their perceptions are heard and validated – especially with pain because “it’s invisible,” she says. “you have to listen attentively and validate their suffering because that in itself is therapy.”
patients have told her they would prefer to have an amputation, become a paraplegic or have cancer because then others would believe their suffering and poor quality of life. they look like normal people, but they have chronic pain, fibromyalgia, headache, arthritis and others not visible to the naked eye. she works with a range of patients, like those who have a spinal cord injury, stroke, amputations, brain injury and chronic pain.
furlan says the goal of rehabilitation is giving patients control over their pain, disability or disease with education and support. this comes with a combination of exercises, heat or cold packs, assistive devices, acupuncture, medication and counselling.
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she stresses that education is critical for people to manage their own health and improve their quality of life. her father, for example, has type 1 diabetes and is dependent on insulin. he needed to learn all about controlling blood sugar and using the technology available. he did, and now he’s enjoying a cruise in the middle of the atlantic ocean right now because his quality of life is amazing. he knows how to control his diabetes.
“once people feel that they have control, they can plan their life, they can go back to work, they can have a good night of sleep,” she adds, which changes their perspective. “even with the same impairment, they will say ‘my quality of life is much better now.’ nothing else has changed except how they feel about it.”
psychology researchers looked at patient empowerment and satisfaction with chronic pain management in a study published in the journal of patient experience in 2021. they found that better outcomes are related to moving away from reliance on biomedical solutions and establishing a self-management approach to pain. the most valuable patient takeaway from attending a pain management program was a sense of confidence in learned skills in self-management. when we have some control over our lives, we feel better about and more confident to deal with adversity.
quality of life improvement is also about helping patients focus on the function that they have and make the most of their abilities. “i tell them that a person who has become paraplegic might find a sport they like [and train to compete] in the paralympics,” furlan says, adding the right education and instruction from the rehab team is empowerment. “they see what opportunities they have and what they need to overcome.”
technology tools can track the ‘missing measurement’
when you look at emerging technology, there are many tools for people to take ownership of their health, like mobile health apps for a calendar view of medication dosages, guided meditation and lifestyle trackers for nutrition, sleep and fitness habits. there’s also popular wearable technology including smartwatches and fitness trackers to promote preventative care and healthy lifestyles. these are all opportunities for people to combine healthcare system support with personal empowerment, ideally finding a more holistic approach to better health.
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quality of life is the focus of the metrics platform from reformulary group, a toronto-based company with a committee of medical experts who reviews new drugs and compares them with drugs on the market, curating a list called the reformulary. the information is available to organizations on a subscription basis to help their members make informed drug choices and promote sustainable drug plans.
the metrics platform has two surveys, developed in collaboration with the university of cambridge, for people to measure key health metrics. one survey is about productivity related to daily responsibilities, whatever those may look like for a senior, someone who does paid work, a caregiver, or person on disability. the other survey on the platform is dedicated to quality of life – a focus that reformulary group founder and ceo helen stevenson, like furlan, is deeply passionate about.
“quality of life is often referred to as the ‘missing measurement’ because it’s very specific to you as an individual and it has different components to it being physical, social, environmental, etc.,” she says. historically, quality of life surveys are really when “a healthcare professional is sitting down and asking the questions, and the answers stay in your file and probably in a lot of cases people don’t get a copy of them. they don’t get to see the difference between last month and this month.”
the metrics platform gives people access to high quality evidence-based survey tools so they can use them and see their progression. for those with arthritis who have chronic pain, the survey can help them evaluate how medication and other therapies impact their life. they could see if a major event like moving house or a death in the family prompted a temporary flareup in symptoms and was not an indication of their disease getting worse.
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also, mental health struggles that often come with chronic pain can also be validated by survey evidence. “sometimes people are hesitant to go to their doctor. it’s not like you have a cut on your arm or broken arm that you can show them. it’s more about how you feel,” stevenson notes.
with the metrics platform dashboard, where you can generate reports on quality of life impact and progress, people gain knowledge and understanding of their own condition. “they can really know and understand their day-to-day experiences of living with a certain therapy [for treatment].”
arthritis society canada participated in a pilot for the metrics platform where innovation ambassadors with arthritis gave feedback on the tools. they found that it was easy to access and use from a laptop or tablet, and said it would be especially helpful for someone who is newly diagnosed and searching for self-help tools. further, the reports, available in both english and french, were comprehensive. the quality of life report in particular was well-presented with simple language, graphs and a printable format.
patient surveys help you monitor your response to medication
taking the surveys is a great “gut check” to see how patients are feeling since doctors rarely have time to discuss the impact of treatment on quality of life. as one ambassador notes, “doctors are super-busy and overworked. appointments are brief and time is generally taken up by doctors performing a joint exam, reviewing test results and medication effectiveness in keeping rheumatoid arthritis under control.”
stevenson has shared the platform with physician groups for insights on whether they felt their patients could access and use the tool. many agreed that the primary physician responsibility is focused on the medication and treatment therapy, and said it would be an advantage for patients to have a tool to help them self-monitor the quality of life aspects of treatment and living with health issues.
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the aim is the empowerment that comes with more knowledge and self-awareness of life experience. patients can print out the last three months of survey tracking to keep for their own information, for instance, or show their doctor the data on what’s been happening. “it’s very informative, because now you’ve got an evidence-based tool. if you’re feeling that your mental quality of life has deteriorated, you can see it in the data now,” says stevenson.
there are other applications for the platform, such as helping patient partners like family caregivers monitor how their personal quality of life is impacted – as a wake-up call to make time for self-care and avoid burnout. and when you think about, quality of life and productivity could be evaluated for any number of reasons to have a reference guide. there’s potential for patients to use the surveys for feedback on medication in drug development trials or for organizations who are focused on disability and return to work.
“it’s not specific to a medical condition or a drug or treatment,” she says of the possibilities for metrics in measuring quality of life and productivity. “there’s much broader applicability for this that could be very powerful.”
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