2025 - The power of PROMs

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THE POWER OF PROMs

(Patient Reported Outcome Measures)

Patients as partners: Getting the most out of your cancer care

The relevance and benefits of PROMs in your cancer care

Myth busting: Don’t believe everything you’ve heard about PROMs

How to use PROMs

What to do when your healthcare team doesn’t mention your PROMs results

Why self-management is an important part of your cancer care

THE POWER OF PROMs

Topic 1 Patients as partners: Getting the most out of your cancer care

introduction

Podcast

FAQ

2-minute read

TOOLS

Success stories

What you and your healthcare team know can make a difference

THE POWER OF PROMs

Patient Success Stories

I’m not a person that’s used to talking a lot about my symptoms. So, the questionnaires helped me a lot to bring to my doctor’s attention every little symptom. Especially for things I didn’t think were necessary to mention. Sometimes it is necessary. It opened my eyes a lot in certain things.

The advantages of using the questionnaires are that it allows you to familiarize yourself with the possible symptoms and it allows you to express yourself about your symptoms, even if you don’t want to talk about them. But you can express them by answering the questions.

THE POWER OF PROMs

Patient Success Stories

I think this approach is great way to have a global, holistic vision of how we are doing. It takes into account physical problems like fatigue and emotional ones like stress. I feel like my body and mind are being treated, that I’m being treated like a whole person.

Filling out the questionnaires helps me feel less overwhelmed. At first it might seem like extra work because we’re not used to doing it – but it’s actually easier for me because I have less to remember and figure out when I use these forms. They kind of do the work for me, which is helpful if I’m really tired or don’t feel well.

THE POWER OF PROMs

Clinican Success Story

It's something that was missing, it helped us a lot to look at the patient's point of view, not what the doctor or the caregiver think of a problem. It's kind of a mirror that helps identify the concern of the patient in addition to the concern of the treating team. So it's an important part.

THE POWER OF PROMs

PATIENT FEEDBACK:

This just seems like something else they’re putting on patients to do. I already feel overwhelmed by everything that’s happening and don’t have enough time to do what I already have to do. Also, sometimes I don’t feel well and it’s hard to concentrate. Why should I have to do this extra work – why can’t I just talk to my doctor? My doctor can just tell me what to do, she’s the expert!

2-minute read Patients as partners: Getting the most out of your cancer care

PROMs allow healthcare professionals to evaluate how the patient is doing—physically and emotionally—completely from the patient’s perspective. This is very important because to provide patient-centered care, clinicians need to understand what is going on with the patient. Only the patient can provide this information. Patients have expressed concern that they are not qualified to assess their symptoms or health and worry about answering the PROMs questions wrong. The good news is that there is no wrong way of answering PROMs. Patients need to answer the PROMs as honestly as they can. Patients are the ones who know their bodies best and are the experts about how they are doing and what is most concerning to them. It is important to remember that patients and healthcare professionals are on the same team and the goal is to get patients through cancer treatment in the best health possible. PROMs are one of the best ways for healthcare professionals to assess symptoms and get patients on the right track.

Although many cancer clinics recognize the value of PROMs and want patients to complete them, the approach is often a bit ad hoc—PROMs are not always done systematically at every visit and for all patients. However, this is the gold standard that healthcare systems are working towards. The research has shown that having patients involved in their care results in better care, better satisfaction, and better clinical outcomes, even in terms of survival in certain cases. So, there's a real advantage for patients to be involved in their healthcare and to participate in PROMs. Their engagement in their care can actually make them feel better both physically and mentally.

THE POWER OF PROMs

PROMs give patients more control over their healthcare—they’re influencing and shaping their experience. Usually, patients who feel more in control, confident and prepared, are better able to plan ahead – they have more choices and can help customize their care plan according to their wishes and preferences. However, some patients feel overwhelmed by their diagnosis and treatment, and don’t want more control or to be more engaged in their care; doing this might even make them feel more anxious. PROMs can still work very well for these patients, as filling out PROMs is all that is needed to communicate their most important needs to their healthcare team, so clinicians can then best plan their care.

Clinics are often busy and rushed during appointments. They don’t always have the time to ask all of the necessary questions or cover everything. The discussions with patients are not necessarily structured—questions get forgotten or the focus is on the wrong thing. PROMs make sure that every question is covered and that the focus is on the symptoms that are most important to the patient.

In the podcast episode of topic 1, Dr. Tarek Hijal, Chief of the Division of Radiation Oncology at the McGill University Health Centre and Associate Professor in the Gerald Bronfman Department of Oncology, shared a story about how PROMs can directly benefit patients. One patient was experiencing pain during treatment. During the first appointment with Dr. Hijal, PROMs were not done and during their appointment, the pain didn’t come up. The following week, the patient completed the PROMs, and it was clear from the answers that pain was a concern. They then spent the whole appointment discussing this symptom and ways to manage it.

You know, these questionnaires are very helpful. They resulted in us taking care of my biggest problem—we didn’t waste time going over things that were not bothering me. I now feel confident that I will be able to get some relief from my pain.

THE POWER OF PROMs

Frequently asked questions

What is patient-centered healthcare?

What is the role of PROMs in patient-centered healthcare?

Why should I want to actively participate in my care?

What are PROMs?

What is patient-centered healthcare?

What is the role of PROMs in patient-centered healthcare?

What are PROMs?

Why should I want to actively participate in my care?

Patient-centered healthcare is an approach to care that focuses on the patient’s specific needs and desired outcomes. In patient-centered healthcare, patients are seen as partners with their healthcare teams and are encouraged to actively participate in their care. PROMs are one way patients can contribute to their care.

PROMs are a set of standardized questionnaires that evaluate how the patient is feeling — physically and emotionally — completely from the patient’s perspective. PROMs are completed by patients without any input from healthcare professionals.

PROMs help healthcare professionals put patients at the centre of their care. PROMs communicate patients’ most important needs and concerns—what they are experiencing and what matters most to them.

Research has shown that when patients actively participate in their care, they benefit from better care and better clinical outcomes, including survival in some cases. When patients engage in their care, they feel better physically and mentally, and are generally less overwhelmed.

THE POWER OF PROMs

Frequently asked questions

Am I qualified to assess my symptoms and my health in answering PROMs?

What if I answer something wrong on PROMs?

Why do I need to complete PROMs when my doctor asks me questions about my health in appointments?

What is the main benefit to me of completing PROMs?

What is the main benefit to me of completing PROMs?

Why do I need to complete PROMs when my doctor asks me questions about my health in appointments?

What if I answer something wrong on PROMs?

Am I qualified to assess my symptoms and my health in answering PROMs?

PROMs are the most effective way for healthcare professionals to accurately assess all your symptoms. They are able to identify the most immediate concerns (e.g., severe pain), as well as issues that are important to patients’ wellbeing but may not rate a “10” on a PROMs scale, such as chronic mild nausea.

There are no right or wrong answers for PROMs. PROMs are a measure of how the patient is feeling, physically and emotionally, from the patient’s point of view. Patients just have to answer honestly how they are feeling.

Clinics are often very busy, and doctors may have limited time during appointments. Questions may get forgotten, or they focus on issues that are not the most important to the patient. PROMs make sure that every question is covered and that the focus is on the symptoms that are most important to the patients.

Patients are definitely qualified to assess their symptoms and health. They are the ones who know their bodies best and are the experts about their symptoms and health experiences.

THE POWER OF PROMs

Tools

Topic 1 Patients as partners: Getting the most out of your cancer care

Introduction to patient-reported health outcome measures (PROMs) – Video realized by apersu

The Process of Using Patient Reported Outcome Measures

THE POWER OF PROMs

Topic 2 The relevance and benefits of PROMs in your cancer care

introduction

Podcast

FAQ

2-minutes read

TOOLS

Success stories

What you and your healthcare team know can make a difference

THE POWER OF PROMs

PATIENT FEEDBACK:

I don’t understand how PROMs help me. My doctor is my main source of information; he’s the one who answers all my questions about my symptoms. This way of doing things works just fine, it doesn’t need to be changed. Maybe PROMs could be good for people who have serious problems and really need help, but in general it seems like a waste of time.

2-minute read The relevance and benefits of PROMs in your cancer care

It can be challenging to understand how answering the same questions over and over benefits your cancer care, or tells you anything you don’t already know. A one-on-one conversation with your doctor may seem like a more effective way to learn about your individual situation. While these interactions are important, PROMs complement patient discussions with the healthcare team and provide clinicians with a better understanding of patients’ experiences. PROMs help the healthcare team to better meet patient needs by facilitating assessment of symptoms as well as monitoring and treating these. PROMs result is an improved, more personalized healthcare experience.

PROMs can help maximize the little time patients have with their healthcare team during appointments by providing a broader view of the patient’s symptoms and concerns than what generally is covered during appointments, where the focus may be on a few particular issues. The health care team often focuses on severe symptoms and symptoms that are getting worse—there’s not always enough time in appointments to ask patients about everything that may be bothering them. PROMs are often completed prior to the appointment, so the healthcare team has in-hand information about many symptoms and can quickly see those that are important for the patient that may have otherwise been missed. By flagging to the healthcare team the most important issues to the patient, PROMs can facilitate communication between the healthcare team and patients.

THE POWER OF PROMs

PROMs complement other clinical tools like blood tests and x-rays, giving a unique view of symptoms from the patient perspective. When combined with other clinical tests and discussions, PROMs offer a more complete health picture of what is going on with patients and help bring the patient experience to life for the healthcare team. This is true even if the questions seem very general. PROMs are a set of standardized questionnaires that are developed to apply to as many situations and patients as possible. They may not always fit each patient exactly; however, the information they collect still tells an important and meaningful health story for the healthcare team.

Many patients find PROMs have encouraged them to stop and think about what’s going on with their health and prompted self-reflection about their condition. The information that PROMs provide empowers patients with a better understanding of their health. PROMs can help patients keep track of all the issues that may be important to them. It is easy to forget details about symptoms and concerns, especially if there are weeks between appointments or patients feel rushed during appointments. PROMs help organize this information for patients, and provide a strong foundation for patients to ask the healthcare team questions to help address their concerns. By extending the conversation between patients and healthcare teams in this way, PROMs contribute to improved patient care.

For other patients, however, the information that PROMs provide can be too much and a source of stress and anxiety, especially if PROMs indicate that symptoms worsen. While some anxiety may be unavoidable as patients complete PROMs, patients don’t need to review the PROM results if this causes too much stress, this can be left to their healthcare team. The important part is completing the PROMs to help the healthcare team gain a more complete picture of what is going on and make better treatment and care decisions.

THE POWER OF PROMs

Patient Success Stories

PROMs really helped me understand my condition better and encouraged me to think about how I really feel more. The questions helped me organize my thoughts about my symptoms and I found it helpful to see the how my answers changed or didn’t from appointment to appointment. Before I start to fill in my answers, I stop and think carefully about why the questions are there in the first place. And that makes you aware of symptoms that you must be attentive to.

It made me think more about what was actually happening. I knew there was sleep disruption and answering these questions helped me analyze this better. It helped me identify problems and think more deeply about them. It was very reassuring to know which things I had to worry about and which ones I didn’t. I could focus on the more important issues then.

THE POWER OF PROMs

Patient Success Stories

I actually think that just filling in the questionnaires and ticking those boxes made me more conscious about what I was feeling. And then I said to myself, okay now I need to take on responsibility, because it is my life. It made me feel stronger and like I could do something.

I struggle with depression and sometimes I don’t want to tell people how I’m feeling. You know, pride or I don’t want to bring somebody else down. Also, when I’m talking to people, even doctors, I’m more likely to lie because I still find a lot of stigma attached to depression. So I like this way of doing it. I can communicate difficult emotions in this more impersonal way of just marking answers to the questions on paper - you’re not actually telling somebody face-to-face.

THE POWER OF PROMs

Clinican Success Story

I think using questionnaires in patient consultations offers significant benefits. Mostly, it gives patients a sense of involvement in their treatment because they spend time answering them, which they're then happy to discuss. Typically, during a visit, we may not ask all necessary questions, especially if things seem to be going well. To me, having these answers beforehand makes the consultation more thorough.

THE POWER OF PROMs

Frequently asked questions

How are PROMs used by my healthcare team to help me?

How can PROMs give an accurate picture of my health situation?

How do PROMs improve communication with my healthcare team?

How do PROMs benefit my cancer care?

How are PROMs used by my healthcare team to help me?

How do PROMs improve communication with my healthcare team?

How can PROMs give an accurate picture of my individual health situation when a lot of the questions are so general and generic?

How do PROMs benefit my cancer care?

PROMs are a set of standardized questionnaires that were developed to apply to as many situations and patients as possible. They may not always fit each patient exactly; however, the information they collect still tells an important and meaningful health story for the healthcare team. Some questions that may not seem relevant for your symptoms or cancer situation can have significance for your doctor when looked at with the rest of the PROMs results and other clinical tests. PROMs results do provide accurate and important information for the healthcare team to help identify problems, guide symptom management and provide high quality care overall.

PROMs help improve communication between patients and the healthcare team by extending the conversation beyond the traditional patient-doctor discussion. Doctors don’t always have time to go over everything during appointments—they tend to focus on severe symptoms and symptoms that are getting worse. PROMs help the healthcare teams see the bigger symptom picture and draw attention to important items to discuss with patients that may have otherwise been missed. PROMs also help patients keep track of the details of their symptoms and make it easier for them to ask the healthcare team questions to help address their concerns.

PROMs are a tool, like blood tests and x-rays, that your healthcare team uses to get the most complete picture possible of your health. In the same way that the results of blood tests and x-rays provide a specific kind of information about what is happening in your body, PROMs results tell a unique story about you—an evaluation of your symptoms completely from your point of view. Once the healthcare team has this information, they are able to address issues and direct care for better outcomes, as they can with medical tests such as x-rays.

PROMs provide your healthcare team with a better understanding of your symptoms and your overall health. The results from PROMs describe a more complete picture—physically and emotionally—of what you are experiencing and help guide your healthcare team to address your most important concerns and needs. PROMs help your healthcare team provide an improved, more personalized healthcare experience.

Frequently asked questions

Isn’t PROMs just a way of shifting responsibility from the healthcare team to patients?

What if having more information about my health makes me anxious?

Why is the summary report relevant and helpful?

What if having more information about my health makes me anxious?

Why is the summary report relevant and helpful?

Isn’t PROMs just a way of shifting responsibility from the healthcare team to patients?

A little anxiety may be unavoidable when you are completing PROMs as you may have to think about the questions to answer them as honestly as you can. And although patients are encouraged to look at the PROMs results and the summary reports, if this causes you too much stress, you do not have to do it. Regardless of how much you interact with or think about your PROMs health information, it will still help you by providing your healthcare team with the details they need to make better treatment and care decisions.

The healthcare team is not trying to shift responsibility by asking patients to complete PROMs. Patients are not doing the work of the healthcare team by answering the PROMs questionnaires—they are contributing input about their health situation to help the healthcare team provide better care. The value of PROMs depends completely on participation from the patient.

The summary reports that are generated each time you answer PROMs questionnaires show how your symptoms are changing over time and help the healthcare team understand if your treatment and care need to be adjusted.

THE POWER OF PROMs

Tools

Topic 2 The relevance and benefits of PROMs in your cancer care

A summary of the article “What is Patient-Centered Care?” published by the New England Journal of Medicine

An example summary report displaying PROMs results

THE POWER OF PROMs

Topic 3 Myth Busting : Don’t believe everything you’ve heard about PROMs

introduction

myths and facts

What you and your healthcare team know can make a difference

Myth busting: Don’t believe everything you’ve heard about PROMs

Myth 1: Patients are not qualified to accurately assess their own health

Myth 2: PROMs are just for research — they don’t help me directly

Myth 3: A lot of the questions are meaningless and not very accurate

Myth 4: It’s not necessary to complete PROMs if I don’t have any symptoms

Myth 5: PROMs aren’t needed — my doctor asks me about my symptoms

Myth 6: Doctors don’t have time to use PROMs — they don’t change anything

Myth 7: PROMs will replace or change the relationship I have with my doctor

Myth 8: It is not useful for patients to know if their situation is getting worse

THE POWER OF PROMs

Myth 1: Patients are not qualified to accurately assess their own health

We are not supposed to be doctors; we are not supposed to have to assess our own health. We don’t have enough knowledge to do that properly. And what if we choose the wrong answer on the 0 to 10 scale how is that going to affect us? The doctors are the experts, they’re the ones professionally educated to understand this sort of thing and it should be left up to them.

Debunk this myth

Patients are, in fact, experts when it comes to describing their symptoms and how they are feeling. It is their input that provides the complete health picture. There are also no right or wrong answers for PROMs. Many aspects of health, such as pain and fatigue, are inherently subjective and may not be captured through conversations with the doctor alone. These can only be accurately reported by the patient.

Fact 1: Patients are the experts when it comes to their health, including their symptoms

Read the quote

THE POWER OF PROMs

Myth 2: PROMs are just for research—they don’t help me directly

PROMs are just for the doctors and research-related activities—they’re not specifically for patients so I don’t take this seriously.

Debunk this myth

It’s true that originally PROMs data were mostly used for research—and a lot of the information is still helpful for research purposes. But it’s the research that has allowed us to discover the power of PROMs to directly benefit patients. So, the focus now is how PROMs can be used in clinical care to provide personalized care to patients by highlighting the areas that are most important to them. Patient care can then be tailored to individual needs.

Fact 2: PROMs provide valuable information that can be used to personalize care for patients

Read the quote

THE POWER OF PROMs

Myth 3: A lot of the questions are meaningless and not very accurate

I think the questions are silly and repetitive. A lot of them don’t make any sense for my situation. Take me for an example—my spine is collapsed, and I have pain in my shoulders and hip. Then you ask if I have pain. I answer yes. Nevertheless, this has nothing to do with my leukemia.

Debunk this myth

PROMs are based on a set of standardized questionnaires that were developed to apply to as many situations and patients as possible. They may not always fit each patient exactly; however, the information they collect still tells an important and meaningful health story to the healthcare team. The summary report shows how your symptoms and health have changed—or not changed—over time. This information is extremely useful for clinicians in planning your care.

Fact 3: PROMs provide useful data by capturing a wide range of symptoms that can inform the healthcare team

Read the quote

THE POWER OF PROMs

Myth 4: It’s not necessary to complete PROMs if I don’t have any symptoms

I think PROMs are only for people who really need help, who have a lot of symptoms or really bad symptoms. Completing these questionnaires is not useful if you don’t have any symptoms or they’re just mild.

Debunk this myth

The purpose and usefulness of PROMs might not seem obvious for patients who have no symptoms; however, even if all of the answers are 0, they help establish a baseline for the patient. This information becomes important if the patient’s situation changes, if they develop symptoms in the future. The healthcare team can then see how things changed and develop an appropriate and personalized care plan.

Fact 4: PROMs help establish a baseline, even when symptoms are not present, which is useful for future care

Read the quote

THE POWER OF PROMs

Doctors tend to focus on the most severe symptoms, mainly because they have a limited amount of time. PROMs offer a structured way to provide comprehensive symptom information, including those not thoroughly discussed—or not discussed at all—during appointments. By getting a more complete picture of patients’ health, doctors are in a better position to identify and address symptoms before they become severe.

Fact 5: PROMs offer a more comprehensive view of a patient's health, covering symptoms often missed during appointments

Read the quote

Myth 5: PROMs aren’t needed—my doctor asks me about my symptoms

PROMs don’t tell me anything I don’t already know and, also, my doctor is the main source of information. She will discuss with me anything I need to know.

Debunk this myth

THE POWER OF PROMs

Myth 6: Doctors don't have time to use PROMs – they don’t change anything

"I think my doctor looked at it once and said it looked nice, but otherwise he hasn’t talked about it. To get patients to understand the value of it, the doctor needs to use it. Why am I going to bother filling it out if they’re not going to look at it?"

Debunk this myth

The integration of PROMs into patient appointments and routine care is challenging for everyone in the healthcare team. A lot of progress has been made, however, to make sure that healthcare teams have easy access to PROMs information, and that the review and use of this information is a consistent part of patient appointments. Patients should never hesitate to use PROMs to initiate a discussion with their doctor or other members of their healthcare team about symptoms that concern them.

Fact 6: PROMs should be used to facilitate conversations with your healthcare team

Read the quote

THE POWER OF PROMs

It has been shown that PROMs improve communication between patients and the healthcare team. Patients have said that PROMs gave them a feeling of “being taken more seriously” because PROMs were more detailed than the usual general questions. PROMs improve patient-clinician communication by providing structure and a consistent vocabulary for when discussing symptoms, which helped highlight the most important issues and created an opportunity to discuss broader health issues and care plans that suited the patient best.

Fact 7: PROMs improve communication between patients and doctors, enriching the relationship

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Myth 7: PROMs will replace or change the relationship I have with my doctor

I get along really well with my doctor, and I feel that we have good discussions about my health and my symptoms. There’s so much information in the PROMs questionnaires...I don’t want to bother my doctor or complain too much about things that may not be important.

Debunk this myth

THE POWER OF PROMs

Myth 8: It is not useful for patients to know if their situation is getting worse

I can’t see how it helps me to know if my symptoms are getting worse. Focusing on anything like this or on my symptoms in general just stresses me out and makes me feel worse. I try not to think too much about it.

Debunk this myth

Many symptoms are easier to manage when they are caught early—before they have a chance to get worse and interfere with daily life. When patients complete PROMs regularly, the healthcare team is better able to treat symptoms and help patients manage them successfully. Although patients might not want to focus on worsening symptoms, identifying them early can lead to better outcomes and better overall management.

Fact 8: Identifying changes in symptoms early allows for better management and treatment

Read the quote

THE POWER OF PROMs

Topic 4 How to use PROMs

introduction

Podcast

FAQ

2-minute read

TOOLS

Success stories

What you and your healthcare team know can make a difference

THE POWER OF PROMs

PATIENT FEEDBACK:

The disadvantage of these questionnaires is that they measure a specific moment in time. That is difficult since my health problems differ each day. Every once in a while when I fill in the questionnaire on a relatively good day I wonder if my doctor is getting representative picture of how I am. And the questions are so general I don’t know how they can accurately describe how my symptoms change.

2-minute read How to use PROMs

PROMs are standardized questionnaires developed to be applicable to as many patients as possible. As a result, they may not always fit each patient’s circumstances; however, they still collect important information for your healthcare team. Clinicians are familiar with standardized tools like PROMs and know how to use the information they provide in the context of the individual patient. Although certain questions may not apply to some patients for their situation, the whole bank of questions helps healthcare teams understand to keep the big picture in mind—think more broadly about what the results mean and see if they are missing anything or need to follow up with the patient. In addition, PROMs can be a starting point to initiate conversations with patients, this is where the healthcare team will get a more personalized picture of the patient’s situation.

PROMs are particularly informative to healthcare teams when they are repeated over time, because then they can see how symptoms evolve over time and better understand patients’ individual experiences of symptoms. If a symptom is rated as a 2/10 and then the following week a 4/10, for example, the healthcare team will take this as an indication that they need to intervene before it becomes perhaps a 10/10. In general, symptoms are easier to treat when they are mild to moderate.

PROMs results are important tools for healthcare teams, particularly in fast-paced clinic environments. They complement other tools, such as blood tests, x-rays. They give clinicians a snapshot of a patient’s overall health and flag issues requiring follow-up.

THE POWER OF PROMs

PROMs results not only help the healthcare team track symptoms and develop care plans, they can also be a resource for patient by providing valuable perspective on the evolution of their health situation. Patients can use PROMs results over time to get a better understanding of what makes their symptoms better or worse, and what they or their healthcare team can do for symptom management.

The 0–10 symptom scoring scale in PROMs is often a source of stress for patients. As many patients have reported, it may be simple to calculate no pain, but if this is the first time they’re experiencing intense pain, they may have no point of comparison. Is it a 7 or an 8? Or is it, in fact, a 10? It is important to keep in mind that there are no wrong answers when answering PROMs. The accurate score is whichever number the patient thinks best represents their symptom. What may be a 5 for one person is a 7 for someone else—and that is perfectly normal. Clinicians don’t compare scores between patients when they are looking at PROMs results; they interpret the results in the context of the individual.

Some patients worry that if they give a symptom a high score, their treatment will be stopped. PROMs results are only one part of the information that clinicians use to make decisions about treatment; they are used along with other criteria, such as blood tests, patient history and discussions, to guide treatment plans.

Honesty is always the best policy when it comes to PROMs. For PROMs results to be beneficial, they must communicate patients’ experiences candidly. Unfortunately, patients sometimes downplay their symptoms because they don’t want to bother the healthcare team or take time and resources away from other patients. A patient said that one time she scored her nausea high and her doctor called to follow up. After that, she rated her nausea lower regardless of how she was feeling so she wouldn’t trigger a call. However, the healthcare team needs accurate information about what patients are experiencing. They want to hear what patients have to say!

It is also important to complete PROMs even in the absence of symptoms. If a patient develops symptoms later on, the healthcare team has a baseline reference and a timeline to evaluate the changes. This information can help them to manage new symptoms and identify their cause. The absence of symptoms may also mean they have been resolved or successfully managed, which is also valuable information. So “no symptoms” can provide a lot of important information for the healthcare team!

THE POWER OF PROMs

Patient Success Story

If I was talking to other patients, I would tell them to definitely do it. And to be as honest as they could possibly be. Because it will definitely benefit them. Because sometimes people don't realise the services that are available to them. That if doctors and nurses knew something was wrong they could offer patients these services.

When you’re initially in treatment and they give you all this information, it’s hard to pay attention. You’re in shock, and your mind is like a million miles away. You can't remember anything anyone tells you. Doing the questionnaires helps keep me focussed and constantly reminds me that there are services available and that it’s on a more personal level. And when I’m talking to a nurse or doctor it’s about something specific to me.

THE POWER OF PROMs

Patient Success Story

I had a really good experience as a result of filling out the questionnaire. I felt very well supported. I was able to access some sessions of therapy with the psychologist who was very helpful to me at the time. I wouldn’t have known about this or asked for this kind of help if someone hadn’t told me after seeing my answers. And then post treatment, to get information that gives you resources that you can refer to if you have questions in addition to talking to my doctor is very helpful. I’m very happy about this.

The graphs were particularly helpful for me. When I could see what was happening to me from month to month, it gave me a sense of having a little bit of control. And I can see what I need to make sure I speak to the doctor about. It gave me that sense of control, that things were being addressed and that I could see what was happening and how it was changing.

THE POWER OF PROMs

Patient Success Story

You know they always say you have to be your own advocate for your treatment, but it really helps to have tools like the questionnaires. So you can say, look, this is getting bad and nobody has addressed it. Or the doctor notices it and brings it up with you. You feel it’s being addressed. So I think it gives you a little more control in a sense of taking care of things.

The biggest thing I remember before doing the questionnaires was that I’d always say I was fine. I'm fine, I'm fine. They'd ask me "How are you?" On a scale of one to whatever it was, and other general questions and I’d always say I was fine. But then doing the questionnaire, answering the questions on the computer was more honest and real for me. It really showed me that I was not always fine!

THE POWER OF PROMs

Frequently asked questions

How can I use the summary report to help me understand my symptoms better.

How can PROMs help me when I only answer the questions on the day of my appointment?

What if I answer a question wrong?

How to I use the 0-10 scale to rate my symptoms?

How can I use the summary report to help me understand my symptoms better.

What if I answer a question wrong?

How to I use the 0-10 scale to rate my symptoms?

How can PROMs help me when I only answer the questions on the day of my appointment and my health problems are different every day?

There are no wrong answers for scoring symptoms in PROMs. Each patient’s experience is unique. People feel symptoms, such as pain and fatigue, differently. What may be a 5 for you could be a 7 for someone else. Clinicians don’t compare the scores of patients when they are looking at PROMs results; they interpret the results in the context of one individual patient experience. It is just important to answer the questions as honestly as you can.

Choose the number that you think most accurately represents your symptom. It may be easy to figure out if your symptom is mild, moderate or severe but more difficult to choose a number from 0-10, especially if you have no point of comparison. For example, you may feel that your pain is really bad but you don’t know if it is best described by 7 or 8, or a 10 and the worst possible pain. Don’t worry about this—just choose the score that feels the most accurate to you.

Your doctor understands when they review your PROMs results that you are giving feedback on your symptoms at a specific time. They know that if on one day your PROMs results show that you are experiencing no symptoms or a couple of mild ones, it doesn’t mean that you feel fine every day. When the same questions are asked many times over a period of time, as with PROMs, your doctor can see how your symptoms are evolving. When the measurements of these specific moments in time are looked at all together, they provide accurate and meaningful information.

The summary report can be a powerful tool to help you gain perspective on your health situation. You can use the presentation of the PROMs results over time to get a better understanding of the symptoms you are experiencing, what may be making them better or worse, and what you or your doctor can do to manage them. The report can also be used to trigger important conversations with your healthcare team.

THE POWER OF PROMs

Frequently asked questions

Why is it important to answer the questions honestly?

Should I complete the PROMs even if I have no symptoms?

If I answer a question with a high score will my treatment be stopped?

Should I complete the PROMs even if I have no symptoms?

If I answer a question with a high score will my treatment be stopped?

Why is it important to answer the questions honestly?

Yes—it is important to complete PROMs even if you have no symptoms. If you do develop symptoms later on, your healthcare team has a baseline reference and a timeline to compare the changes to, which can help them understand what caused new symptoms and how to manage them. If you don’t have any symptoms because they have resolved or have been successfully managed, it is also valuable to have this information if anything changes.

In order for PROMs results to be beneficial in-patient care, they have to be as true a representation as possible of what the patient is experiencing. If you downplay your symptoms because you don’t want to bother anyone or because you’re afraid it could affect your treatment, your healthcare team won’t be aware of the support and care you may need. You are never bothering your healthcare team when you are honest about how you are feeling!

PROMs results are only one part of the information that the healthcare team uses to make decisions about treatment. PROMs results are used with other criteria, such as clinical tests, patient history and patient discussions, to determine if changes or adjustments need to be made to a treatment plan.

THE POWER OF PROMs

Tools

Topic 4 How to use PROMs

A guide on how to fill out certain Patient Reported Outcome Measures

THE POWER OF PROMs

Topic 5 What to do when your healthcare team doesn’t mention your PROMs results

introduction

Podcast

2-minute read

FAQ

TOOLS

Success stories

What you and your healthcare team know can make a difference

THE POWER OF PROMs

PATIENT FEEDBACK:

2-minute read What to do when your healthcare team doesn’t mention your PROMs results

My doctor has never discussed my answers to the questionnaires with me. I think maybe once he said “this looks really nice” but otherwise nothing. I mean, I don’t understand the value of doing this, why am I going to fill it out if my doctor is not going to look at it. I guess it’s really just for my information —something I can refer to and keep track of things.

It’s normal for patients to find it frustrating when they complete the PROMs, and their healthcare team doesn’t discuss or even mention the results. However, if the results don’t come up during an appointment, it doesn’t mean that the healthcare team doesn’t care about the PROMs or the work that patients put into them.

PROMs are almost as new for healthcare teams as they are for patients. Most healthcare teams are still working to integrate PROMs into routine clinical care and the follow up is not always consistent. Healthcare teams have to become familiar with PROMs and their results and figure out how all of this information fits into patient care in a consistent and meaningful way. Also, sometimes a busy clinic means the “new kid on the block” doesn’t always get the attention it should. It’s important to remember that even if your healthcare team doesn’t discuss the PROMs results with you, it doesn’t mean they aren’t using them. The PROM results become part of the patient's file, and it is often reviewed and integrated into the healthcare team’s assessment.

If your PROMs aren't discussed during an appointment and you'd like to talk about them, the best approach is to ask questions. PROMs are a great communication tool and can help prompt a discussion. For instance, you can try asking “I noticed my pain has been getting worse, and I'm concerned—what do you think?” Or “Can we go over my PROMs results? I have a few questions.” These questions can remind the healthcare team about the importance of the PROMs, while putting the focus on symptoms or concerns relevant to your care.

THE POWER OF PROMs

It can be challenging for patients to take the initiative with the healthcare team; but it’s really important that you find out what you need to know. Don’t worry if your doctor seems busy—you’re not bothering anyone by asking questions. The patient's role is crucial in effective communication around their health care: don't wait to ask your questions. And don't be afraid to step outside of your comfort zone and invite yourself into the discussion if your doctor doesn’t mention your PROMs results and there’s something you want to discuss.

Many patients assume that if their doctor or nurse needs to know something they will ask. Or if there’s some information they need, their doctor or nurse will give it to them. So, they wait for the healthcare team to bring up issues. But at the same time, clinicians assume that if patients have questions or want information, they will ask. And if they have new information about symptoms, for example, they will just automatically offer it.

The communication, then, is mostly one sided – doctor to patient. Communication is much more effective when it goes both ways. During appointments, doctors and nurses tend to focus on the most severe symptoms or symptoms that are getting worse. While this covers an important part of the patient’s care, it may not deal with everything the patient is concerned about. When patients ask questions or add information on their own, a comprehensive picture of their health evolves that can impact treatment and care plans. If patients don't communicate by asking questions and sharing information about themselves, they may feel like the care they get doesn't match what they want, expect or need. By contributing to the conversation, patients are more likely to get a personalized healthcare experience.

Lack of communication can also impact patients’ health. Patients may feel anxious or stressed because they don't have the answers or information that would help them. These emotions can make symptoms worse. Valuable time during appointments can also be lost in focusing on issues that are not the most important for the patient.

Research has shown that when patients actively participate in their healthcare, they have improved health outcomes and an overall much better experience. So never hesitate to invite yourself into the discussion with your healthcare team—your voice can make a difference!

THE POWER OF PROMs

Patient Success Story

Each time I had a meeting with my doctor I was able to look at my report and review the different symptoms, and to remember if I had a question even if he didn’t ask me about something. I don’t worry if he doesn’t mention my PROMs – I know what I want to ask and need to ask.

My doctor is really nice and helpful, but she is always so busy and sometimes I feel like she’s rushing through the appointment. Sometimes she mentions the PROMs results and sometimes she doesn’t. But I always have my list of questions ready and organized, and she never says she doesn’t have time to answer them. I often feel that I get more information because I ask questions.

THE POWER OF PROMs

Patient Success Story

I have always been very nervous around doctors and afraid that they will get impatient or think I’m stupid if I ask questions. Since I started filling out the PROMs questionnaires, it made me think more about the things that were bothering me and what wasn’t a problem. They helped me think of things I would like to know more about. So I started to get my courage up and ask my oncologist a few questions, and then it became easier and easier.

I wish I had asked more questions sooner instead of just going with the flow. As soon as I did, my doctor helped me make some changes that improved my fatigue. I used to circle a 4 on the rating scale because I didn’t think it was that bad. But one appointment I asked if it was normal to be so tired every day that I didn’t feel like I could do anything. He said, “But you only circled a 4.” And then we really started talking about it.

THE POWER OF PROMs

Clinican Success Story

Sometimes, we might forget to ask certain questions or underestimate their importance, but these might be crucial to the patient. I review answers before seeing the patient, so I know which areas need focus or discussion. Standardizing this process helps, as everyone uses the same questionnaire, ensuring consistency. Overall, I think it definitely adds value to the patient care process.

THE POWER OF PROMs

Frequently asked questions

Why should I complete PROMs if my doctor doesn’t mention the results?

Why didn’t my doctor mention my PROMs results during my appointment?

Why is it important to ask questions—won’t my doctor just tell me everything I need to know?

What can I do if my doctor doesn’t mention my PROMs results but I would like to discuss them?

Why should I complete PROMs if my doctor doesn’t mention the results?

Why is it important to ask questions—won’t my doctor just tell me everything I need to know?

Why didn’t my doctor mention my PROMs results during my appointment?

What can I do if my doctor doesn’t mention my PROMs results but I would like to discuss them?

Healthcare teams are still getting used to integrating PROMs into routine care and figuring out the best ways to do this—and this can take time. Also, if the clinic is really busy, doctors sometimes can’t take the time to discuss everything and they focus on the standard issues.

In the same way you may assume that your doctor will ask you if they need to know something or give you all the information you need, your doctor assumes that if you want information you will ask and you will offer information about your health, like if you are experiencing a new symptom, without being asked. Patients have an important role to play in effective communication around their healthcare.

Even if your doctor doesn’t bring up your PROMs results, it doesn’t mean they don’t think they’re important or that they don’t use them. The PROMs summary report is part of your file, and your doctor often reviews this outside of the appointment, notes issues, and integrates the results into your health assessment.

The best thing you can do is ask questions. For example: “There are some things that concern me in my PROMs results—can I ask you a couple of questions?” In this simple way, you can redirect the focus of the discussion to your PROMs results and issues that are important to you but haven’t come up in the discussion.

Frequently asked questions

What are some consequences of me just waiting for my doctor to bring things up or give me information?

Am I bothering my doctor when I ask questions?

How can PROMs help me ask questions?

Am I bothering my doctor when I ask questions?

What are some consequences of me just waiting for my doctor to bring things up or give me information?

How can PROMs help me ask questions?

You are never bothering any member of your healthcare team when you ask questions! It is important that you get the information that you want and need. Asking questions is an important way for you to participate in your healthcare.

PROMs are a very effective communication tool. They can help focus the conversation during appointments on what is bothering you the most and provide an opportunity to discuss broader health issues with your doctor that may not come up otherwise.

During appointments, doctors tend to focus on serious symptoms or symptoms that are getting worse. But this doesn’t mean that these are the only issues that are bothering you and affecting your health and wellbeing. Not knowing something or not having the answers can also cause stress and anxiety and make symptoms worse. So, it is essential to step forward and ask questions and offer information that is important to you. The more personalized the information your healthcare team has, the more personalized care you will receive.

THE POWER OF PROMs

Tools

Topic 5: What to do when your healthcare team doesn’t mention your PROMs results

Tips on how to talk to your healthcare team

THE POWER OF PROMs

Topic 6 Why self-management is an important part of your cancer care

introduction

Podcast

FAQ

2-minute read

TOOLS

Success stories

What you and your healthcare team know can make a difference

THE POWER OF PROMs

2-minute read Why self-management is an important part of your cancer care

PATIENT FEEDBACK:

I shouldn’t have to read medical-type information and figure out what to do myself about my chemo side effects. I’m so tired and this is stressful and a lot of work. My doctor is my main source of information—he’ll tell me what to do. And if he doesn’t tell me, it’s probably not important or can’t be fixed.

Self-management involves patients using strategies to manage their health, such as addressing physical and emotional symptoms. For example, adjusting your diet to control nausea or practicing meditation to reduce stress. Research shows that self-management can improve symptoms and overall wellness, preventing issues from worsening and affecting daily life.

In a podcast on this topic, Sylvie Lambert, an associate professor at McGill University and researcher St. Mary's Research Center, spoke with Lisa Marcovici, a breast cancer survivor, about her experience with self-management during her treatment. They discussed how she took charge of her cancer care and the benefits that followed and encourage others to do the same.

LISA SHARES:

Information is the magic key. Educating ourselves and doing the homework is part of our responsibility to take the best care of ourselves. The more we learn, the easier it is to set the fertile ground for health. I see self-management as something we should embrace as a way forward.

THE POWER OF PROMs

PROMs and Self-Management

Patient-reported outcome measures (PROMs) provide an overview of your physical and emotional health. Doctors use PROMs to focus on serious symptoms that may require medical attention, but they might not address everything you’re experiencing. This is where self-management comes in. PROMs give insight into your symptoms, and self-management offers strategies to manage them.

Making Information Work for You

Cancer-related information can feel overwhelming, especially when you're already dealing with so much. Some dive deep into research and personal experiences, but if you’re unsure where to start, ask your healthcare team for guidance. The key is to make information your ally. Gather information from credible sources like the Canadian Cancer Society. The more you learn, the more prepared you’ll feel, which can reduce fear and uncertainty around a cancer diagnosis.

Self-Management Can Be Empowering

Self-management isn’t meant to be a burden; it’s about empowerment. Healthcare professionals aren’t shifting responsibility onto patients. When patients actively participate in their care, they receive more personalized treatment, leading to better health. Everyday life offers many examples of self-management, like treating a minor cut with an ointment to prevent infection instead of going to the hospital. These small actions can be empowering, and self-management during cancer care works similarly.

A Sense of Control

Self-management provides a sense of control and can help anchor you during uncertain times. It provides you with the opportunity to take actions that make a real difference in your health. Whether it’s working with a nutritionist, practicing yoga, or joining a support group, finding strategies that work for you can shape your experience. Some patients find peace in organizing their day-to-day routine—knowing exactly what’s happening and when. Trial and error are a natural part of self-management, and discovering what works best for you can be very rewarding.

THE POWER OF PROMs

A Symptom Diary is self-management’s best friend

A symptom diary is an essential tool in self-management. It helps you track patterns—what helps, what doesn’t, and what makes certain symptoms better or worse. Keeping a record of what you eat, how you feel, and your emotional state allows you to find correlations and make adjustments. For instance, you’re better able to identify when certain triggers, like foods or other habits, worsen symptoms like nausea, or which support system works best when you’re feeling stressed or anxious. This practice of regular self-reflection can help you better manage your wellbeing.

Invite Yourself into the Discussion

Asking questions is another important part of self-management. It’s essential to understand your health situation and feel comfortable seeking clarification. Doctors may not always address all your concerns, so bringing a list of questions to your appointments ensures you get the information you need. Don’t wait for your healthcare team to fill in the gaps—being proactive helps personalize your care and empowers you to make informed decisions. The way in is simple: “Can I ask you a few questions?”. Here is a guide containing a list of other questions you can use at your next appointment to start the discussion on self-management:

Self-management is more than symptom management

Self-management strategies help manage both physical and emotional symptoms, but it can go beyond that. Common recommendations for managing nausea, pain, or stress work for most people, but personalizing these strategies can improve your well-being even further. For instance, creating a calming routine for treatment days—such as listening to music during chemo or having a special meal afterward—can give you more control. Self-management can also help you prepare for upcoming treatments by practicing relaxation techniques, eating well, and staying active. Ultimately, self-management is about discovering ways to get the most out of your life, no matter the challenges.

THE POWER OF PROMs

Patient Success Story

In the old days, you’d go to the hospital and they’d say you need x, y, z. But you’d have no information on what they're doing and you're in the dark, so the stress is there. Not knowing is the worst thing possible. If you have the information and understand the information, then your mind is at ease. PROMs were a first step for me because they helped me think about the symptoms that were bothering. And then I really got into the self-management part because it helped me understand and made me see I could actually do something to make my situation better.

Answering the PROMs questions and knowing that there are resources available—and also just knowing that you’re not the only one with these symptoms you’re going through, that it’s something many people deal with, was so helpful. In my case, I found that reading up on the feelings I was experiencing helped me change my psychological approach to my situation—I learned, yeah ok, this is how I can deal with this. I would say always be curious about what you can do to help your health.

THE POWER OF PROMs

Patient Success Story

Yes, I definitely learned a lot. I knew the factsheets for self-management were resources I could trust—I didn’t have to go randomly searching online. And it’s great to know the information is medically solid. If you wanted more information, they recommended websites to check. Then that way I didn’t have to be worried about the source.

The more things I can control or help on my own, the better I like it! If I know a symptom or problem is common and I have the information to manage it, this is so much better than wondering and worrying, and trying to contact my doctor. I can always check with my doctor later and ask questions, but at least I’m not just sitting around worrying in the meantime.

THE POWER OF PROMs

Frequently asked questions

How do I handle all of the self-management information?

What effect can self-management have on my health?

What is self-management?

What is the relationship between PROMs and self-management?

What effect can self-management have on my health?

How do I handle all of the self-management information?

What is the relationship between PROMs and self-management?

What is self-management?

If you are not sure where to begin with self-management information, ask your healthcare team for help. They may be able to provide you with what you need or they will point you in the right direction of credible sources. The more you learn and know, the better you will be able manage the ups and downs of treatment. Information can also help reduce the fear and uncertainty a cancer diagnosis can provoke by shedding light on unfamiliar territory and providing solutions for to help you cope.

Self-management involves patients using strategies to help manage aspects of their own health, such as physical and/or emotional symptoms. For example, self-management strategies could include adjusting your diet to manage nausea or practicing meditation to relieve stress.

PROMs provide you with detailed information about your symptoms and concerns and self-management provides you with the tools to handle them. Doctors tend to focus on serious symptoms and concerns—the items that score high on PROMs and may require medical intervention. However, you can use self-management strategies—in consultation with your healthcare team—to address the symptoms and concerns that score lower on PROMs but are still important to you and may be affecting your wellbeing.

Research has shown that self-management can significantly improve certain symptoms and lead to improved overall health and wellness. It can also help symptoms from getting worse and interfering with daily life.

THE POWER OF PROMs

Frequently asked questions

How can self-management help empower me when I’m dealing with cancer treatment?

Is asking questions part of self-management?

How can a symptom diary help me?

How can a symptom diary help me?

Is asking questions part of self-management?

How can self-management help empower me when I’m dealing with cancer treatment?

Asking questions to understand your health situation is an important part of self-management. Accessing available information is one way to fill knowledge gaps—and asking questions is another. Asking questions can help you build self-management content, point you in the direction of reliable information, and help you make important decisions as you go through treatment. Every patient’s experience is inherently unique and asking questions is one way you can help your healthcare team personalize your care.

Self-management can empower you by giving you back some control over your health when you may feel like everything is spinning out of control. Self-management provides you with an opportunity to make a difference in your care by giving you the tools to take the best possible care of yourself. And this can be very empowering—to know you can make a real difference even with all of the medical things happening to you. You have probably already successfully self-managed your health many times in your everyday life—for minor cuts, pulled muscles or when you have a cold. To be able to do this can shape your experience for the better.

A symptom diary can help identify patterns to facilitate self-management: what works; what doesn’t work; and what makes symptoms better or worse. It helps you keep track of details and behaviours that can be hard to remember but that can make a difference when you’re managing your health and completing PROMs. You can, then, capitalize on the things that make your symptoms better during treatment.

THE POWER OF PROMs

Tools

Topic 6 Why self-management is an important part of your cancer care

A symptom diary to help you keep track of your symptoms

Factsheets to help you understand and manage your symptoms

Topic 4 How to use PROMs

In this podcast, Sylvie Lambert, Associate Professor at the Ingram School of Nursing at McGill University and Researcher at St. Mary’s Research Centre, talks to Lisa-Marie Fitzwilliam, assistant head nurse of the Oncology Clinic at the Lakeshore General Hospital, about how to use PROMs effectively and the importance of answering the questions as honestly as possible.

16 minutes

I feel somehow stronger, like I’m doing something important to help myself by answering these questions. And they cover many more details than what I discuss with my doctor. You can certainly end up with more accurate treatment by filling in this kind of questionnaire. These questions help me focus on my main issues and symptoms, and prepare me to have a good conversation with my doctor.

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

I like the PROMs very much. The questions are everyday questions. That makes it much easier to explain and describe how you feel. Because you try to explain how it is and how it feels to your doctors, but it is so hard to explain in a way that people can imagine how your feel.

Topic 6 Why self-management is an important part of your cancer care

In this podcast, Sylvie Lambert, associate professor at the Ingram School of Nursing at McGill University and researcher at St. Mary’s Research Centre, talks to Lisa Marcovici, a breast cancer survivor, about the importance of self-management in cancer care. Lisa describes her experiences and lessons learned using self-management during her treatment for breast cancer, how she took charge of her cancer care and the benefits that resulted.

25 minutes

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

My doctor forgot to mention the PROMs during a lot of my appointments, but they helped me to remember to ask questions about certain symptoms that I would have forgotten about. It’s hard to remember everything between appointments. The last appointment when my doctor asked about nausea I didn’t have any, but because of the PROMs questions, I was able to see that it had been a bit of a problem since the last appointment. I found that the PROMs were a good way to trigger discussions.

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

I’ve noticed in my appointments that my doctor has a better understanding of my condition since I started filling in the PROMs questionnaires—a fuller, more accurate picture. I think it should be mandatory to do this. That way the doctors get to know much better how you are feeling, or how you think you are feeling.

Topic 1 Patients as partners: Getting the most out of your cancer care

In this podcast, Sylvie Lambert, Associate Professor at the Ingram School of Nursing at McGill University and Researcher at St. Mary’s Research Centre, talks to Dr. Tarek Hijal, Chief of the Division of Radiation Oncology at the McGill University Health Centre and Associate Professor in the Gerald Bronfman Department of Oncology, about the role of PROMs in patient-centered care and how PROMs can make a difference in your cancer care.

13 minutes

Topic 5 What to do when your healthcare team doesn’t mention your PROMs results

In this podcast, Sylvie Lambert, Associate Professor at the Ingram School of Nursing at McGill University and Researcher at St. Mary’s Research Centre, talks to Dr. Shereen Ghali, a hematologist-oncologist at the Lakeshore General Hospital, about what patients can do when they complete the PROMs questionnaires, but their doctor doesn’t mention the results.

12 minutes

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

I found the PROMs provided a great “icebreaker” to discuss all kinds of things with my doctor. It is extraordinarily helpful when you sit down with your doctor and he says, “This is what I see…” and I say, “Well, this is what I see…”. And we talk about how we can improve those areas that I would like to see improved, or maybe manage better those areas that may not be able to be improved."

I usually like to deal with things on my own, but I would have appreciated knowing how PROMs could help someone like me who didn’t have any big problems. Mostly things were okay but sometimes I didn’t understand what was happening with the way my body was feeling. I would have appreciated a little push from someone to let me know that I don’t have to be in a critical situation to ask for help.

Disclaimer

The information on this website is for informational purposes only and is not intended to replace professional medical advice or care from a health care professional. It is not set up to provide specific advice on which you should rely. In particular, the Website and the information which may be accessed through it is not a substitute for professional medical care by a qualified doctor or other healthcare professional. You should always consult a qualified health care professional for answers to personal medical questions or before taking, or not taking, any action on the basis of the content on the website. Medical information changes constantly. Therefore, the information on this website or on the linked websites should not be considered current, complete or exhaustive, nor should you rely on such information to recommend a course of treatment for you or any other individual. Reliance on any information provided on this website or any linked websites is solely at your own risk. The creators of this website do not accept any liability for any claims, losses or damages (whether direct or indirect) to any person who relies on the content of this website. The creators of this website are not responsible for the content of any third-party website which may be linked to this website. We do not endorse any specific test, products, processes, service providers, diets, or other information that may be mentioned on the website or the linked website. No advice or information, whether oral or written, obtained by you from the website shall create any guarantee, warranty or other obligation not expressly stated in this Disclaimer.

I realized at a certain point that ignoring how I was feeling was making me feel worse than keeping a symptom journal and completing the PROMs questionnaires. Sometimes my doctor had had ways to improve my symptoms. Sometimes it just helped when my doctor said what I was feeling was normal.

Topic 2 The relevance and benefits of PROMs in your cancer care

In this podcast, Sylvie Lambert, Associate Professor at the Ingram School of Nursing at McGill University and Researcher at St. Mary’s Hospital Research Centre, talks to Maya Jeanty, Department Manager of Community Oncology Medicine at St. Mary’s Hospital Centre and the Lakeshore General Hospital Oncology Clinic, about relevance and specific benefits for patients of incorporating PROMs into their cancer care.

13 minutes

I never actually understood completely that PROMs could be used in the consultation. I’ve always believed that it was just something that was saved in some big databases somewhere and that there were researchers who sat and looked at it. When my doctor actually started talking about my questionnaire answers and how we could improve something that was bothering me I was amazed. We had a really good discussion, and he suggested some strategies that really helped.