CCSN Long Covid FINAL.pptx

Cancer Patients & long COVID
1

RESEARCH CONTEXT AND OBJECTIVES
Leger, on behalf of the Canadian Cancer Survivor Network (CCSN), conducted an online study
to assess the long-term impact of COVID-19 on cancer patients.
Specifically, how long COVID impacts cancer patients and their ability to receive treatment.
• Are cancer patients and caregivers concerned about long COVID?
• Do cancer patients & caregivers get mild/severe COVID or COVID more than once?
• COVID-19 vaccination status
• How long have they experienced long COVID? Was it diagnosed by an HCP?
• Symptoms caused by long COVID? Are symptoms improving or much the same?
• Do cancer patients with long COVID have other comorbidities/chronic diseases?
• Impact of long COVID on lifestyle, ability to go back to work or to contribute to society in
other ways, other activities (sports, hobbies, etc.)?
• What financial impact, if any, is long COVID causing?
• Are they getting any help (medical, counselling, etc.) for long COVID symptoms?
• What is “normal” now to cancer patients and caregivers?
Key topics addressed
in the survey
2

RESEARCH METHODOLOGY – SAMPLE SIZE
Data collection took place from March 2nd to May
3rd, 2023.
 Web survey of 119 Canadians with cancer
 The survey was made available in both
English and French
REGIONAL ACHIEVEMENTS
QUE 31%
(37)
ON 38%
(45)
AB 10%
(12)
BC 11%
(13)
SK 3%
(4)
ATL 3%
(3)
MB 3%
(4)
3

RESEARCH METHODOLOGY – RECRUITMENT
SCREENING CRITERIA:
• 18 years or older and currently living in Canada
• Respondents qualification criteria:
 Diagnosed with cancer within the past 10 years
 They, or their caretaker, have had long covid
RECRUITMENT:
• N=86 respondents were recruited via our LEO PANEL – Leger’s proprietary consumer panel
with nearly 500,000 members (largest in Canada)
• N=33 respondents were recruited via open links sent out to CCSN members and CCSN partner
organization members
4

 Nearly half of
respondents were
first infected with
COVID-19 more
than 1 year ago.
Half rate the
severity of their
infection as
Moderate.
 Cough, Fatigue,
Body ache / pain,
Headache, and
Fever were the
most common
symptoms
experienced
 Nearly nine in ten
respondents
confirmed their
infection, mostly
through rapid or
PCR tests
 Only 4% of
respondents say
they are not
vaccinated against
COVID-19 and do
not intend to
receive any
vaccinations
7
FIRST INFECTED
WITH COVID-19
Within the past 3 months
From 3 to 6 months ago
From 6 months to 1 year ago
More than 1 year ago
11%
18%
25%
46%
1% do not recall
SEVERITY OF COVID-19
INFECTION
Mild
Moderate
Severe
I don’t know
25%
50%
22%
3%
SYMPTOMS EXPERIENCED
Cough
Fatigue
Body ache / pain
Headache
Fever
Breathing problems
Loss of taste
Difficulty concentrating
Loss of smell
Sleep problems
Digestive symptoms
Inability to exercise
Dizziness when you stand
Heart symptoms / conditions
Pins-and-needles feeling
Nausea / vomiting
Anxiety / depression
Other
73%
70%
67%
61%
59%
49%
37%
33%
32%
25%
25%
25%
24%
21%
19%
17%
16%
9%
8%
HOSPITALIZED FOR
TREATMENT OF
COVID-19
87%
CONFIRMED
INFECTION
VACCINATION
STATUS
96%
Vaccinated
3% One dose
12% Two doses
81% One or more boosters
4% Not
vaccinated
<55: 73%
Female: 68%
<55: 75%
Female: 56%
ROC: 50%
Male: 35%
QC: 56%
QC: 6%
QC: 95%
PR: 95%
COVID DEVELOPMENT DETAILS AND VACCINATION STATUS

SEVEN IN TEN experience FATIGUE as a symptom of LONG COVID, with about ONE-QUARTER of
respondents reporting experiencing symptoms for MORE THAN ONE YEAR since initial infection.
NEARLY NINE IN TEN report still feeling the impact of COVID-19.
8
LONG COVID
SYMPTOMS
Fatigue
Difficulty breathing
Memory, concentration or
sleep problems
Muscle aches
Persistent cough
Depression or anxiety
Loss of smell or taste
Chest pain
Trouble speaking
Fever
Digestive symptoms
Other
72%
57%
53%
47%
43%
36%
29%
19%
15%
10%
5%
11%
LENGTH OF TIME EXPERIENCED
LONG COVID SYMPTOMS
Less than 6 months
7 months – 1 year
Between a year and a year
and a half
More than a year and a half
I don't know
38%
21%
10%
14%
17%
LENGTH OF TIME TO RECOVER
FROM LONG COVID
Less than 3 months
3 – 4 months
5 – 6 months
7 months – 2 years
Still feeling the impact
of COVID-19
SYMPTOMS EXPERIENCING
Fatigue
Memory, concentration or
sleep problems
Difficulty breathing
Muscle aches
Persistent cough
Trouble speaking
Chest pain
Digestive symptoms
Fever
Other
77%
52%
50%
45%
34%
33%
24%
17%
14%
6%
3%
14%
Self-diagnosed based on
symptoms
A healthcare professional
diagnosed me / my caregiver
A friend / family made me
realize I may have long COVID
My caregiver made me realized I
had / have long COVID
Other
56%
30%
11%
5%
10%
ROC: 62%
QC: 22%
ROC: 62%
Stage 4*: 57%
*Caution: Low base (<20)
Remission: 47%
<55: 19%
QC: 37%
Stage 4*: 67%
*Caution: Low
base (<20)
n=98
5%
3%
3%
3%
86%
Of those who feel
they have
recovered, it took
an average of
5 months to
feel that they had
completely
recovered
DIAGNOSING LONG COVID

MORE THAN HALF (57%) of respondents have consulted a HEALTHCARE PRACTITIONER to manage
their LONG COVID. However, when it comes to treatment, nearly HALF say they’re NOT GETTING
ANY HELP and ONE IN FIVE say they DON’T NEED ANY HELP.
9
HEALTHCARE PRACTITIONERS
CONSULTED TO MANAGE
LONG COVID
Consulted Healthcare
Practitioner (Net)
I don't know who to consult
I haven't consulted any
healthcare practitioner
57%
9%
34%
GETTING HELP NEEDED TO OVERCOME
LONG COVID / ACCESS TO LONG COVID
TREATMENT PROGRAMS
Getting help (Net)
I'm / they're not getting
any help
I / they don't need any
help
I / they don't know where
to seek help
26%
47%
18%
9%
BARRIERS IN GETTING HELP TO
OVERCOME LONG COVID / ACCESS
LONG COVID TREATMENT PROGRAMS -
Unaided
Difficulty discussing subject with
doctor
Difficulty to obtain diagnosis
Access to a (family) doctor
Lack of information regarding Long
COVID treatment programs
Lack of proper treatment
Other
I don't know
20%
13%
11%
11%
9%
29%
15%
<55: 15%
55+: 41%
Male: 29%
ON: 29%
<55: 25%
55+: 19%
(Among those who indicated they are not getting any help to overcome
their long COVID / access long COVID treatment programs n=55)
Healthcare Practitioners Consulted:
• Family doctor / general practitioner (50%)
• Another physician (11%)
• Oncologist (10%)
• Long COVID clinic (6%)
• Pharmacist (5%)
• Mental health counsellor (4%)
• Nurse (3%)
• Other (4%)
Getting Help Needed:
• Medical treatment (17%)
• Counselling (6%)
• Rehabilitation (4%)
• Long COVID clinic (3%)
• Other (11%)
55+: 22%

10
7%
6%
19%
39%
29%
68% Very
or
Somewhat
Concerned
Very Concerned (n=31): (Unaided)
•Worried about long term issues / persistence of symptoms
(11 mentions)
•Lack of knowledge / uncertainty of effects (7 mentions)
•Symptoms / conditions are worsening (7 mentions)
•Reduced quality of life / wellbeing (6 mentions)
•Lack of medical support (5 mentions)
Somewhat Concerned (n=39): (Unaided)
•Worried about long term issues / persistence of symptoms
(14 mentions)
•Reduced quality of life / wellbeing (9 mentions)
•It can worsen other medical conditions (5 mentions)
Being able to see the doctor managing cancer in-person for regular follow-up appts
Being able to get help if I experience side effects related to treatment or new symptoms
Ability to be cared for in emergency room at hospital if needed
Being able to receive post-treatment rehabilitative care
Ability to receive hospital care (other than emergency room) if needed
Being able to get tests related to my cancer
Ability to receive adequate care / support from family / friends
Being able to receive cancer treatment in a timely fashion
Ability to receive adequate care / support from caregiver
Top 2
Box**
37%
37%
36%
35%
34%
34%
31%
27%
25%
IMPACT OF HAVING LONG COVID ON
ABILITY TO RECEIVE CANCER CARE
CONCERN ABOUT LONG COVID
IMPACT OF HAVING COVID ON
OTHER ASPECTS OF LIFE
Overall state of health and wellbeing
Ability to exercise
Ability to participate in social engagements
Ability to participate in hobbies, sports, volunteering or other such activities
Mental health
Diet/ nutrition
Time to care for others in family
Ability to go back to work (inside or outside the home)
Financial wellbeing
Top 2
Box**
82%
74%
70%
67%
66%
60%
59%
52%
43%
VERY
CONCERNED
SOMEWHAT
CONCERNED
NOT VERY
CONCERNED
NOT AT ALL
CONCERNED
I DON’T
KNOW
Stage 4*: 100%
Female: 77%
QC: 51%
Stage 4*: 57%
QC: 41%
<55: 47%
<55: 51%
ROC: 16%
<55: 49%
ROC: 24%
<55: 84%
Female: 79%
55+: 79%
55+: 84%
QC: 49%
55+: 72%
Female: 67%
<55: 58%
Female: 52%
TWO IN THREE are VERY OR SOMEWHAT CONCERNED about their LONG COVID – mainly due to the potential LONG TERM
ISSUES, REDUCED QOL, and UNCERTAINTY OF EFFECTS. ONE-QUARTER to nearly TWO IN FIVE report COVID having an IMPACT
ON THEIR ABILITY TO RECEIVE CANCER CARE. However, respondents report a LARGER IMPACT on OTHER ASPECTS OF LIFE.
<55: 44%
Female: 41%
should we sa
Significant + So
Impact instea
Added footno
**On a 4-point scale: Significant impact, some impact, not
much impact, or no impact at all. Top 2 box is a net of
respondents who chose significant impact or some impact

Of those who report experiencing LONG COVID impacts their FINANCIAL WELLBEING, half say this is
due to the INABILITY TO WORK full-time or as usual. Respondents feel BETTER ACCESS TO AND
SUPPORT FROM A DOCTOR would help them overcome LONG COVID.
11
Inability to work as usual
(full time)
Increase in expenses
Inability to work / loss of
income
Difficulty to pay the rent /
bills
Indebted
Other
49%
26%
23%
9%
4%
17%
FINANCIAL IMPACT OF
LONG COVID - Unaided
Better access / support from a
(family) doctor
Treatment / medication / cure
Information / counselling
Better access to a long covid
clinic / specialist
Psychotherapy
Physiotherapy
Housekeeping service (free)
Financial support
Diagnosis / test
More research / studies
Specialist
Others
None / nothing in particular / I
don't know
13%
13%
11%
8%
4%
4%
4%
4%
3%
3%
3%
10%
34%
SUPPORT / SERVICES NEEDED TO
OVERCOME SYMPTOMS OF LONG
COVID - Unaided
Fatigue / lack of energy
Reduced quality of life /
wellbeing
Being more careful / follow
health measures
Isolation
Weakness / reduced physical
capacity
Accept and learn to live
differently
Shortness of breath or difficulty
breathing
Frustration of struggling
Other
Nothing has changed
18%
15%
11%
11%
10%
9%
8%
7%
6%
24%
14%
NEW “NORMAL” LIVING WITH CANCER
AND EXPERIENCING / HAVING
EXPERIENCED LONG COVID - Unaided
55+: 18%
Female: 17%
Female only
Male only
55+ only
<55: 28%
ON: 2%
(Among those who indicated having long COVID had a
significant or some impact on their life n=47)

KEY STUDY FINDINGS
Among those surveyed, HALF of patients diagnosed with cancer within the past 10 years, or their caregivers, DEVELOPED COVID-19. Of those,
about ONE IN SIX have experienced or are EXPERIENCING LONG COVID.
Nearly half of patients were FIRST INFECTED with COVID-19 MORE THAN ONE YEAR AGO. Half rate the severity of their infection as MODERATE.
The most common symptoms experienced were cough (73%), fatigue (70%), body aches / pains (67%), headaches (61%), and fever (59%).
• Nearly nine in ten were able to CONFIRM THEIR COVID-19 INFECTION. Two-thirds confirmed their infection via Rapid test, and one-
quarter via PCR test
• Fewer than one in ten (8%) were HOSPITALIZED for treatment of COVID-19
Respondents most often continued to experience fatigue, shortness of breath or difficulty breathing, memory, concentration or sleep problems,
and other COVID symptoms. THREE IN TEN WERE FORMALLY DIAGNOSED WITH LONG COVID by a healthcare professional, but the largest
proportion (56%) SELF-DIAGNOSED long COVID based on symptoms.
• Of those diagnosed by a healthcare professional, three in four (78%) were DIAGNOSED BY A GP and 11% were diagnosed by a specialist
Nearly TWO IN FIVE respondents (37%) reported DIFFICULTIES BEING DIAGNOSED with long covid. Nearly one-quarter consulted a healthcare
professional regarding their symptoms, but they did not receive a formal diagnosis. However, 38% DID NOT CONSULT A HEALTHCARE
PROFESSIONAL for their long COVID symptoms.
One-quarter of respondents experienced or have been experiencing long COVID symptoms for MORE THAN ONE YEAR at the time of survey.
86% report that they are STILL FEELING THE EFFECTS of long COVID. Of those who feel fully recovered, it took them an average of 5 months to
feel completely recovered.
1
2
4
5
3
13

KEY STUDY FINDINGS
Those who are still feeling the effects of long COVID are most likely experiencing FATIGUE (77%), memory, concentration or sleep problems
(52%), or shortness of breath or difficulty breathing (50%).
Of the symptoms they are still experiencing, the majority say the SYMPTOMS ARE UNCHANGING, they are not improving or getting worse.
However, more than two in five who are experiencing DEPRESSION OR ANXIETY report their symptoms are GETTING WORSE.
When it comes to treating and managing long COVID, MORE THAN HALF OF PATIENTS have CONSULTED A HEALTHCARE PRACTITIONER. Some
have consulted specialists like neurologists and lung specialists. One-third have not consulted any healthcare practitioner.
• Nearly half DID NOT or ARE NOT GETTING ANY HELP to overcome long COVID or access long COVID treatment programs. Of those not
receiving help, one in five say it’s a difficult subject to discuss with their doctor – some feel there is a LACK OF KNOWLEDGE or receptivity
to their having long COVID on the doctor’s part.
TWO-THIRDS are VERY or SOMEWHAT CONCERNED about long COVID, mainly due to the unknown of long-term issues, unchanging symptoms,
the reduced quality of life, and the lack of medical support or treatment
• FEMALES are MORE LIKELY TO BE CONCERNED about their long COVID than males
• Those in QUEBEC are LESS LIKELY TO BE CONCERNED about their long COVID than other provinces
1
2
4
3
14

KEY STUDY FINDINGS
Nearly two in five patients say their ABILITY TO SEE THEIR DOCTOR IN-PERSON FOR REGULAR FOLLOW-UP APPOINTMENTS and ABILITY TO GET
HELP RELATED TO SIDE EFFECTS OR NEW SYMPTOMS from a treatment was impacted in some or a significant way due to their or their caregiver’s
long COVID.
• Those YOUNGER THAN 55 report their long COVID having MORE OF AN IMPACT ON THEIR CANCER CARE than those 55 years of age or older.
Specifically, being able to get help if they experience side effects related to treatment, ability to be cared of in emergency room if needed, and
being able to receive post-treatment rehabilitative care
Additionally, OVERALL STATE OF HEALTH AND WELLBEING was reported to have been impacted the most due to their or their caregiver’s long
COVID.
• As with impact on cancer care, those YOUNGER THAN 55 report MORE OF AN IMPACT on other aspects of their life such as exercise, hobbies,
mental health, diet / nutrition, and financial wellbeing.
• FEMALES also report MORE OF AN IMPACT on other aspects of their life.
The FINANCIAL IMPACT of long COVID on respondent’s lives is mostly due to an INABILITY TO WORK AS USUAL (full time). Additionally, an increase
in expenses due to needing to arrange for things to be delivered or pay for other services has put a strain on some with long COVID.
Patients feel that BETTER ACCESS TO AND SUPPORT FROM THEIR FAMILY DOCTORS, access to treatments and medication, and additional
information or counselling would help them to overcome their long COVID
Nearly one in five respondents feel that their new “normal” is LIVING WITH FATIGUE or a lack of energy along with INCREASED ANXIETY OR
DEPRESSION and REDUCED QUALITY OF LIFE.
1
2
4
5
3
15

KEY TAKEAWAYS
Of Cancer patients who were infected with COVID-19, one in six may experience long COVID
While three in ten cancer patients showing symptoms of long COVID were formally diagnosed by a healthcare professional, about one in five consulted a
healthcare practitioner but did not receive a formal diagnosis. 37% in total reported having difficulties being diagnosed. In some cases, this was later
problematic as to access long COVID treatment clinics, patients needed a referral. This was additionally problematic for those without a GP.
Nearly three in five respondents have looked to a healthcare practitioner for assistance with managing long COVID and treatment options, while one-third
have not discussed their long-COVID with any healthcare practitioner.
About one-quarter are getting help to manage or treat their long COVID, but half say they’re not getting any help. Of those not getting any help, they feel
their doctor has a lack of knowledge of long COVID or a lack of receptivity to their having long COVID.
Patients feel that better access / support from a (family) doctor, a treatment or medication for long COVID, and more information and counselling
about long COVID would help them to better manage their long COVID.
The two biggest areas of impact that having long COVID had on receiving cancer treatment were related to being able to see the doctor who is managing
cancer in-person for regular follow-up appts and being able to get help if the patient experiences side effects related to treatment or new symptoms.
Being able to receive cancer treatment in a timely fashion and receiving support from a caregiver were less impacted.
In other areas of their life, cancer patients who experienced or are experiencing long COVID felt that long COVID had an impact on their overall health
and wellbeing, as well as their ability to exercise, participate in social activities, or other hobbies and activities. 43% said long COVID had a significant or
some impact on their financial wellbeing, with more than half of females (52%) and those less than 55 years old (58%) reporting some or significant
impact on their financial wellbeing.
While some patients have fully recovered others think the new “normal” is adjusting to life with an ongoing sense of fatigue or lack of energy, along with
anxiety, depression, and a reduced quality of life.
16

Of 1,505 respondents diagnosed with cancer in the past 10 years, half have had, or their
caregiver has had, COVID-19. Of those who have had COVID-19, 16% have experienced or are
experiencing long COVID
1,505 respondents
diagnosed with cancer in the
past 10 years
760 have either had COVID-19 or
their caregiver has had COVID-19
124 have experienced or are
experiencing long COVID
100%
50%
8%
16% of cancer patients surveyed who
developed COVID-19 experienced or
are experiencing long COVID
Patient or caregiver
has had COVID-19
Patient or caregiver has
had long COVID-19
18

Nearly half of patients were first infected with COVID-19 more than one year ago and about the
same proportion rated the severity of their infection as moderate
Q2. When were you first infected with COVID-19? / Q3. How would you rate the severity of your / your cargiver’s COVID-19 infection?
FIRST INFECTED WITH COVID-19
Within the past 3 months
From 3 to 6 months ago
From 6 months to 1 year ago
More than 1 year ago
11%
18%
25%
46%
Base: Total Patients (n=114) / Total Respondents (n=119)
1% do not recall
SEVERITY OF COVID-19 INFECTION
Mild
Moderate
Severe
I don’t know
25%
50%
22%
3%
Stage 2*: 44%
QC: 22%
<55: 58%
19

The most common symptoms experienced that led respondents to believe that they had COVID were
cough, fatigue, body ache / pain, headache, and fever
Q4. What symptoms did you experience that led you to believe you had COVID?
Cough
Fatigue
Body ache / pain
Headache
Fever
Shortness of breath / breathing problems
Loss of taste
Difficulty thinking or concentrating
Loss of smell
Sleep problems
Digestive symptoms, including diarrhea and stomach pain
Heart symptoms or conditions
Nausea / vomiting
Other
Other mentions (<10%):
Rash, Sore throat, Cold symptoms, Blood clots and
blood vessel (vascular) issues, Changes in menstrual
cycle, High sensitivity of smell, Sneezing, Runny
nose, Fast aging
Base: Total Patients (n=114)
73%
70%
67%
61%
59%
49%
37%
33%
32%
25%
25%
25%
24%
21%
19%
17%
16%
9%
Dr. dx LC: 85%
Dr. dx LC: 85%
Dr. dx LC: 65%
Stage 2*: 57%
20

Symptoms experienced – in detail
Q4. What symptoms did you experience that led you to believe you had COVID?
TOTAL ON QC ROC MALE FEMALE 18-54 55+
n=114 n=44 n=36 n=34 n=37 n=77 n=40 n=74
Cough 73% 77% 56% 85% 81% 69% 78% 70%
Fatigue 70% 70% 64% 76% 70% 70% 78% 66%
Body ache / pain 67% 73% 58% 68% 70% 65% 70% 65%
Headache 61% 52% 64% 71% 49% 68% 73% 55%
Fever 59% 61% 61% 53% 51% 62% 75% 50%
Shortness of breath / breathing problems 49% 52% 42% 53% 35% 56% 53% 47%
Loss of taste 37% 39% 31% 41% 32% 39% 38% 36%
Difficulty thinking or concentrating 33% 30% 22% 50% 35% 32% 30% 35%
Loss of smell 32% 30% 31% 35% 32% 31% 40% 27%
Sleep problems 25% 25% 31% 21% 35% 21% 23% 27%
Digestive symptoms, diarrhea and stomach pain 25% 34% 14% 26% 24% 26% 28% 24%
Inability to exercise 25% 30% 19% 24% 24% 25% 33% 20%
Dizziness when you stand 24% 23% 19% 29% 22% 25% 25% 23%
Heart symptoms or conditions 21% 20% 14% 29% 16% 23% 28% 18%
Pins-and-needles feeling 19% 27% 6% 24% 14% 22% 28% 15%
Nausea / vomiting 17% 20% 14% 15% 11% 19% 23% 14%
Anxiety / depression 16% 23% 6% 18% 14% 17% 15% 16%
Other 9% 14% 3% 9% 8% 9% 8% 9%
Mentions <10% not shown
21

Six in seven respondents were able to confirm their COVID-19 infection – majority via rapid test
Q5. How did you confirm that you were infected with COVID-19?
Base: Total Respondents (n=119)
CONFIRMED INFECTION
Confirmed (Net)
Confirmed through a Rapid test
Confirmed through a PCR test
Tested positive when went to hospital for treatment for another condition
Confirmed through blood serum test
Consulted doctor who suggested COVID-19 but did not take a COVID test to confirm
Did not take COVID-19 test but believe it to be COVID-19 infection because of
symptoms
87%
68%
24%
8%
3%
7%
6%
QC: 95%
PR: 95%
Remission: 79%
Female: 28%
22

8% of respondents were hospitalized for treatment of their COVID-19 infection.
Of all cancer patients, 96% are vaccinated, with most having received at least one booster.
Q6. Were you hospitalized for the treatment of COVID-19? / Q7. Have you been vaccinated against COVID-19? / Q9. As far as you know, have you / your caregiver been infected with
COVID-19 once or more than once?
Base: Total Patients (n=114) / Total Patients (n=114) / Total Respondents (n=119)
8%
VACCINATION STATUS
Vaccinated (Net)
One dose
Two doses
One or more booster doses (in
addition to two doses)
Not vaccinated, and do not
intend to
96%
3%
12%
81%
4%
66%
28%
6%
Once More than
once
Don't
know
NUMBER OF TIMES INFECTED
WITH COVID-19
HOSPITALIZED FOR TREATMENT
OF COVID-19
ROC: 65%
<55: 70%
55+: 74%
Those hospitalized are all
vaccinated to some extent
(unknown if they were vaccinated
at the time of hospitalization)
ROC: 24%
23

Fatigue is the most common long COVID symptom respondents experienced or are still experiencing,
by nearly three-quarters. More than half also experience(d) shortness of breath or difficulty breathing
and memory, concentration or sleep problems
S12. Which of the following long COVID symptoms did you or do you experience? / As far as you know, which of the following long COVID symptoms did your caregiver experience or are
currently experiencing?
Base: Total respondents (n=119)
SYMPTOMS
EXPERIENCED/EXPERIENCING
Fatigue
Shortness of breath or difficulty breathing
Memory, concentration or sleep problems
Muscle aches
Persistent cough
Chest pain
Trouble speaking
Fever
Digestive symptoms
Other
72%
57%
53%
47%
43%
36%
29%
19%
15%
10%
5%
11%
Ear issues (painful, blocked), dizziness, weakened
immune system, throat issues, phantosmia,
phlegm, shakes
QC: 22%
ROC: 62%
Dr. dx LC: 61%
ROC: 62%
Stage 2*: 69%
Stage 4*: 57%
Dr. dx LC: 19%
24

One-quarter of respondents experienced or have been experiencing long COVID symptoms for more than one
year. On average, respondents or their caregivers experienced symptoms for 11 months
Q10. Earlier you mentioned that you have experienced / are experiencing long COVID. For how long did you experience / have you been experiencing long COVID symptoms?
LENGTH OF TIME EXPERIENCED
LONG COVID SYMPTOMS
Less than 3 months
4 - 6 months
7 - 9 months
10 months - 1 year
Between a year and a year and a half
More than a year and a half
I don't know
22%
16%
8%
13%
10%
14%
17%
On average, respondents or their
caregivers experienced, or have been
experiencing, long COVID symptoms for
11 months
Stage 4*:
19 months
Dr. dx LC: 25%
Remission: 11%
25

Nearly nine in ten respondents who reported having experienced long COVID report that they are
still feeling the impact of COVID-19
Q14. How long did it take for you to feel that you had completely recovered from long COVID?
LENGTH OF TIME TO RECOVER
FROM LONG COVID
Less than 3 months
3 – 4 months
5 – 6 months
7 months – 2 years
Still feeling the impact of COVID-19
5%
3%
3%
3%
86%
Of those who feel as though they have recovered
from long COVID, it took an average of
5 months to feel that they had completely
recovered
26

Three in ten respondents were diagnosed by a healthcare professional with long COVID, while the
remainder are self-diagnosed based on symptoms. Of those diagnosed by a healthcare professional,
three in four were diagnosed by their GP
Q11. How did you / your caregiver find out that you are / were experiencing long COVID? / Q13. Which healthcare professional diagnosed you with long COVID?
CONFIRMING LONG COVID
Self-diagnosed based on symptoms, did not receive a formal diagnosis
A healthcare professional diagnosed me / my caregiver with long COVID
A friend / family member made me / my caregiver realized I / they may
have long COVID, but did not receive a formal diagnosis
My caregiver made me realized I had / have long COVID but did not
receive a formal diagnosis
Other
56%
30%
11%
5%
10%
<55: 19%
Remission: 47%
<55: 40%
Of the 27 respondents formally
diagnosed with long COVID, three-
quarters (78%) were diagnosed by their
GP and 11% were diagnosed by another
specialist physician
27

Nearly two in five respondents experienced difficulties being diagnosed with long COVID, mainly that
they consulted a healthcare professional but they did not receive a formal diagnosis. An additional
two in five did not consult a healthcare professional for their long COVID symptoms
Q12. Did you / your caregiver or do you face any difficulty being formally diagnosed with long COVID by a healthcare professional?
DIFFICULTIES BEING DIAGNOSED WITH LONG COVID
Difficulties being diagnosed (Net)
YES – I consulted a healthcare professional for my symptoms, but they did not
formally diagnose with long COVID
YES – because I was diagnosed with COVID-19 through a rapid test at home and did
not have proof of COVID-19 when started experiencing long COVID symptoms
YES – because I did not take any tests to confirm COVID-19
YES – because I did not have a confirmation of COVID-19 through a positive PCR /
blood test
YES – other reason
No difficulty - I consulted a healthcare professional for my symptoms and they
formally diagnosed me with long COVID
I did not consult a healthcare professional for long COVID symptoms
37%
22%
3%
3%
2%
8%
25%
38%
Female: 45%
<55: 33%
28

Three in four respondents who are still feeling the impact of long COVID are experiencing fatigue and
half are experiencing memory, concentration or sleep problems
Q15. What symptoms do you continue to experience since your initial COVID-19 diagnosis?
Base: Those still feeling impact of long COVID (n=98)
SYMPTOMS EXPERIENCING
Fatigue
Memory, concentration or sleep problems
Muscle aches
Persistent cough
Trouble speaking
Chest pain
Digestive symptoms
Fever
Other
77%
52%
50%
45%
34%
33%
24%
17%
14%
6%
3%
14%
Ear issues (painful, blocked), throat issues,
insomnia, phantosmia, GERD, hives, headaches
QC: 37%
55+: 22%
Stage 4*: 67%
29

Of the symptoms they are still experiencing, the majority report they are unchanging, not improving
or getting worse. However, more than two in five who are experiencing depression or anxiety report
their symptoms are getting worse
Q16. Are you seeing any change in the long COVID symptoms you continue to experience?
Base: Those still feeling impact of long COVID (n=98)
CHANGE IN CONTINUED LONG COVID SYMPTOMS
Chest pain (n=14*)
Shortness of breath or difficulty breathing (n=49)
Fatigue (n=75)
Memory, concentration or sleep problems (n=51)
Depression or anxiety (n=32)
Persistent cough (n=33)
Muscle aches (n=44)
Trouble speaking (n=17*)
Loss of smell or taste (n=24)
Other (n=14*)
36%
31%
28%
25%
25%
21%
20%
18%
17%
43%
50%
57%
61%
57%
31%
58%
59%
71%
79%
43%
14%
12%
11%
18%
44%
21%
20%
12%
4%
14%
Improving Much the
same
Getting
worse
Symptoms with 10 or fewer respondents experiencing them not shown
ROC: 74%
ON: 35%
Male*: 92%
<55*: 42%
ON: 0%
Remission* only
30

Two in five patients experienced fatigue as a new symptom after their initial COVID-19 infection.
Other commonly experienced symptoms were body aches / pain, shortness of breath / breathing
problems, and dizziness when standing
Q17. Are there any new symptoms you experienced for the first time after your initial COVID-19 infection which you did not experience before you had COVID-19?
NEW SYMPTOMS AFTER INITIAL COVID-19 INFECTION
Fatigue
Body ache / pain (joint or muscle pain)
Shortness of breath / breathing problems
Cough
Difficulty thinking or concentrating
Loss of taste
Sleep problems
Headache
Loss of smell
Digestive symptoms, including diarrhea and stomach pain
Heart symptoms or conditions
Fever
Other
39%
33%
30%
27%
24%
24%
24%
23%
21%
19%
16%
15%
14%
13%
13%
12%
11%
Rash, Nausea / vomiting, Blood clots and blood
vessel issues, Changes in menstrual cycle, Throat
issues, Skin issues
55+: 26%
55+: 28%
55+: 32%
Female only
31

Half of patients consulted their family doctor to help them manage long COVID, while one-third say
they have not consulted any healthcare practitioner
Q18. Did you consult any healthcare practitioner to help you manage long COVID?
HEALTHCARE PRACTITIONERS
CONSULTED TO MANAGE LONG COVID
Consulted healthcare practitioner (Net)
Family doctor / General Practitioner
Another physician
Oncologist
Long COVID clinic
Pharmacist
Mental health counsellor
Nurse
Other
I don't know who to consult to for long COVID symptoms
I haven't consulted any healthcare practitioner
57%
50%
11%
10%
6%
5%
4%
3%
4%
9%
34%
“ENT, Neurologist” - ON
“Lung specialist” - BC
“Naturopath” - BC
Female only
“One of the hospitals had a
COVID outreach team” - ON
<55: 15%
55+: 41%
33

Nearly half of respondents did not or are not getting help to overcome long COVID or access long
COVID treatment programs
Q19. Did you / your caregiver or are you getting the help you need to overcome long COVID / access to long COVID treatment programs?
GETTING HELP NEEDED TO OVERCOME LONG COVID
/ ACCESS TO LONG COVID TREATMENT PROGRAMS
Getting help (Net)
Medical treatment
Counselling
Rehabilitation
Long COVID clinic
Other
I'm / they're not getting any help
I / they don't need any help
I / they don't know where to seek help
26%
17%
6%
4%
3%
11%
47%
18%
9%
“First long COVID clinic was
underwhelming. On waiting list for
Toronto Western- a year’s waiting list. I
desperately need nutritional counseling
because of competing dietary needs for
different conditions - not available
under OHIP, and a dietician only focuses
on one condition not competitors. None
of the specialists or the family doctor
will deal with or manage LC” - ON
“Inadequate help with long waitlists for
tests and specialists” - BC
<55: 9%
Male: 29%
QC: 14%
55+: 22%
34

Of respondents who are not getting help to manage their long COVID, one in five say it’s because the
subject is difficult to discuss with their doctor due to a lack of knowledge or receptivity, while others
say it’s difficult to obtain a diagnosis or even access the doctor
BARRIERS IN GETTING HELP TO OVERCOME LONG COVID /
ACCESS LONG COVID TREATMENT PROGRAMS - Unaided
Difficulty discussing subject with doctor (lack of knowledge, receptivity)
Difficulty to obtain diagnosis
Access to a (family) doctor
Lack of information regarding long COVID treatment programs
Lack of proper treatment
Other
I don't know
20%
13%
11%
11%
9%
29%
15%
“Wait times at clinics” - AB
“There's nothing really available with my
insurance here. You have to pay for it out
of pocket and that is impossible for me
right now.” - SK
Q19b. As far as you know, what are the barriers [for your caregiver] in getting help to overcome long COVID / access to long COVID treatment programs?
Base: Respondents not getting help to manage long COVID (n=55)
ON: 29% <55: 25%
55+ only
35

Respondents not getting help to manage their long COVID believe barriers to care are a lack of
knowledge on the doctor’s part or access to the doctor
Q19b. As far as you know, what are the barriers [for your caregiver] in getting help to overcome long COVID / access to long COVID treatment programs?
Base: Respondents not getting help to manage long COVID (n=55)
BARRIERS IN GETTING HELP TO OVERCOME LONG COVID /
ACCESS LONG COVID TREATMENT PROGRAMS
“Having a supportive GP
that cares, isn’t burnt out
and knows anything
about long COVID” - ON
“Having different medical issues, including
cancer tend to get doctors to concentrate on
those issues. And when they find that all Is
normal with those health issues, they
disregard the rest and it seems they don't
want to say it is long covid” - ON
“I am not aware of COVID-
long management programs
or how to access them” - QC
“Doctor does not
seem to believe or
understand my
discomfort” - QC
“There's not enough general knowledge by GPs or the
public regarding this matter. Provide access to long covid
clinics without the required physician referral.” - ON
“No family doctor so
difficult to get
referral.” - ON
“I have been told
there is nothing that
can be done to get rid
of long COVID” - BC
36

Two in three are very or somewhat concerned about long COVID, mainly due to any long-term
issues, reduced quality of life, and uncertainty of long-term effects
Q20. How concerned are you about your / your caregiver’s long COVID? / Q20b. Why do you say that?
CONCERN ABOUT LONG COVID
7%
6%
19%
39%
29%
VERY
CONCERNED
SOMEWHAT
CONCERNED
NOT VERY
CONCERNED NOT AT ALL
CONCERNED
I DON’T
KNOW
68% Very or
Somewhat
Concerned
Very Concerned (n=31): (Unaided)
• Worried about long term issues / persistence of symptoms (11 mentions)
• Lack of knowledge / uncertainty of effects (7 mentions)
• Symptoms / conditions are worsening (7 mentions)
• Reduced quality of life / wellbeing (6 mentions)
• Lack of medical support (5 mentions)
Other mentions (<5): It can worsen other medical conditions, Symptoms are concerning,
Worried about getting COVID again, Learning to live differently, Stories from others, I have
other conditions to deal with, Worried about worsening symptoms
Somewhat Concerned (n=39): (Unaided)
• Worried about long term issues / persistence of symptoms (14 mentions)
• Reduced quality of life / wellbeing (9 mentions)
• It can worsen other medical conditions (5 mentions)
Other mentions (<5): Symptoms are concerning, Vaccinated and still worried, I have other
conditions to deal with, Hope it will resolve, Worried about getting COVID again, Learning to
live differently, Stories from others, Lack of knowledge and effects, Symptoms / conditions are
worsening
QC: 8%
Male: 34%
Stage 4*: 100%
Female: 77%
QC: 51%
37

Those who are ‘Very Concerned’ about long COVID mention the various areas that COVID has impacted their life
including social, physical, mental, emotional, and financial, and feeling like there is no help or treatment options
“Its impact on my life has been
devastating in all aspects.
Physical, mental, emotional,
financial ruin. And it hasn’t
stopped- just keeps appearing in
different body systems. Nor is
there any substantive support,
treatments or management of
symptoms. Specialists are not
interested in extending their
perspectives to include LC. And in
3 years I’ve had 2 new family
doctors and both have now
closed their practices. So as of
May I’ll have no family doctor
and no understanding of how to
access ongoing care for complex
comorbidities.” - ON
Base: Those very concerned about long COVID (n=31)
“VERY CONCERNED” ABOUT LONG COVID
“No treatment in sight. Lack of appropriate
tests that indicate a LC condition. No
effective LC testing within individual
symptoms by specialists. Have gone into
financial free fall and am heading towards
eviction. Have gone into hoarding behaviours
with stress. Had to have my long term
roommate go into LTC because I couldn’t
support his life needs anymore. Loss of family
doctor.” - ON
“Because I am finding it hard to speak
clearly without forgetting or misplacing
words. My memory is getting worse.” - BC
“When I got COVID and long COVID, it was horrible. I
was off for 3 months and then it took an additional 6
to get back to full time work. At various points I
thought I had irreversible brain damage. I couldn’t
even make out simple words like “the”, it was that
bad. There was nothing available to help. I NEVER
want to go through anything like that again. It was
terrifying. To this day, there are times where I feel
there are glimmers of long COVID in my brain. I’m
worried that if I get COVID again, the impact on my
brain will be even worse.” - ON
“Smell of smoke is quite constant, I choke and
sensation also in the eyes. Do not feel anymore or
sense anything else. Fear of staying like that
always. I also get out of breath easily.” - QC
38

Those ‘Somewhat Concerned’ mention the impact that long COVID has had on their cancer
treatment or that long COVID prevents them from focusing on their cancer treatments
“Because I can not always do my
chemo and radiation treatments, they
always test me before having a
treatment and if I have a fever and
my blood tests are not good, either it
is my red or white blood cells that
have been affected, I can’t get
treatment.” - QC
Base: Those somewhat concerned about long COVID (n=39)
“SOMEWHAT CONCERNED” ABOUT LONG COVID
“Because chest pain does not
go away. I passed several
exams, CT scans, cardiac echo
and I have nothing.” - QC
“Don’t like not
being able to
concentrate.” - BC
“I worry about how changes in
my lungs will affect my future
cancer outcomes.” - ON
“It's hard to tell the
difference from long
term covid to my cancer
symptoms.” - ON
“I am just hoping this is not permanent
and will eventually resolve. I do have
bigger issues of health to worry about
and would just like to go on living my
life.” - AB
“The ghost smell of
cigarette really
annoys me.” - QC
“It's scary when I can't catch my
breath. I have sleep apnea at night
- stop 60 times an hour use a CPAP
- now I have to lay in bed with
CPAP part of day to be able to
breathe comfortably” - ON
39

Nearly two in five patients say their ability to see their doctor in-person for regular follow-up
appointments and ability to get help related to side effects or new symptoms from a treatment was
impacted in some or a significant way
Q21. We would like to understand how long COVID / your caregiver’s long COVID has impacted you personally as a cancer patient. Please indicate the extent to which it has impacted
your ability to receive cancer care
IMPACT OF HAVING COVID ON ABILITY
TO RECEIVE CANCER CARE
17%
12%
18%
19%
19%
18%
18%
14%
13%
19%
25%
18%
16%
14%
15%
13%
13%
13%
22%
16%
13%
9%
13%
17%
15%
13%
14%
36%
37%
37%
37%
36%
42%
44%
45%
46%
6%
10%
14%
18%
18%
8%
10%
15%
14%
Significant
impact
Some
impact
Not much
impact
No impact
at all
Don't
know
Being able to see the doctor managing cancer in-person for regular
follow-up appts
Being able to get help if I experience side effects related to treatment or
new symptoms
Ability to be cared for in emergency room at hospital if needed
Being able to receive post-treatment rehabilitative care
Ability to receive hospital care (other than emergency room) if needed
Being able to get tests related to my cancer
Ability to receive adequate care / support from family / friends
Being able to receive cancer treatment in a timely fashion
Ability to receive adequate care / support from caregiver
Top 2
Box
37%
37%
36%
35%
34%
34%
31%
27%
25%
QC: 27%
Stage 4*: 57%
40

Top 2 Box Ratings TOTAL ON QC ROC MALE FEMALE 18-54 55+
n=119 n=45 n=37 n=37 n=38 n=81 n=43 n=76
Being able to see the doctor managing cancer in-
person for regular follow-up appts 37% 40% 38% 32% 37% 37% 44% 33%
Being able to get help if I experience side effects
related to treatment or new symptoms 37% 42% 43% 24% 34% 38% 49% 30%
Ability to be cared for in emergency room at
hospital if needed 36% 38% 41% 30% 34% 37% 47% 30%
Being able to receive post-treatment
rehabilitative care 35% 36% 35% 35% 24% 41% 51% 26%
Ability to receive hospital care (other than
emergency room) if needed 34% 29% 38% 35% 34% 33% 42% 29%
Being able to get tests related to my cancer 34% 42% 35% 22% 24% 38% 44% 28%
Ability to receive adequate care / support from
family / friends 31% 40% 35% 16% 21% 36% 33% 30%
Being able to receive cancer treatment in a timely
fashion 27% 24% 41% 16% 26% 27% 35% 22%
Ability to receive adequate care / support from
caregiver 25% 24% 30% 22% 18% 28% 30% 22%
Impact of Having COVID on Ability to Receive Cancer Care – in detail (Top 2 Box)
IMPACT OF HAVING COVID ON ABILITY TO RECEIVE CANCER CARE
Q21. We would like to understand how long COVID / your caregiver’s long COVID has impacted you personally as a cancer patient. Please indicate the extent to which it has impacted
your ability to receive cancer care
41

Four in five respondents say long COVID has had a significant or some impact on their overall state
of health and wellbeing
Q22. We would like to understand how long COVID / your caregiver’s long COVID has impacted other aspects of your life. Please indicate the extent to which it has impacted the following
IMPACT OF HAVING COVID ON OTHER ASPECTS OF LIFE
34%
41%
31%
34%
28%
20%
29%
30%
19%
48%
33%
39%
33%
38%
39%
30%
22%
24%
12%
10%
10%
11%
13%
15%
13%
8%
16%
6%
15%
19%
19%
21%
24%
25%
33%
39%
1%
1%
3%
2%
3%
7%
3%
Significant
impact
Some
impact
Not much
impact
No impact
at all
Don't
know
Overall state of health and wellbeing
Ability to exercise
Ability to participate in social engagements
Ability to participate in hobbies, sports, volunteering or other such activities
Mental health
Diet/ nutrition
Time to care for others in family
Ability to go back to work (inside or outside the home)
Financial wellbeing
Top 2
Box
82%
74%
70%
67%
66%
60%
59%
52%
43%
42

Top 2 Box Ratings TOTAL ON QC ROC MALE FEMALE 18-54 55+
n=119 n=45 n=37 n=37 n=38 n=81 n=43 n=76
Overall state of health and wellbeing 82% 89% 81% 76% 82% 83% 86% 80%
Ability to exercise 74% 80% 68% 73% 63% 79% 84% 68%
Ability to participate in social engagements 70% 76% 62% 70% 68% 70% 77% 66%
Ability to participate in hobbies, sports,
volunteering or other such activities
67% 73% 65% 62% 63% 69% 79% 61%
Mental health 66% 73% 49% 73% 55% 70% 84% 55%
Diet/ nutrition 60% 69% 51% 57% 53% 63% 72% 53%
Time to care for others in family 59% 62% 51% 62% 42% 67% 65% 55%
Ability to go back to work (inside or outside the
home)
52% 49% 49% 59% 45% 56% 60% 47%
Financial wellbeing 43% 44% 32% 51% 24% 52% 58% 34%
Impact of Having COVID on Other Aspects of Life – in detail (Top 2 Box)
43

Of those who say long COVID has had an impact on their financial wellbeing, half say that they are
unable to work full time anymore
Inability to work as usual (full time)
Increase in expenses (delivery fees, care fees, other services)
Inability to work / loss of income
Difficulty to pay the rent / bills
Indebted
Other
49%
26%
23%
9%
4%
17%
Q23. You mentioned that long COVID had an impact on your financial wellbeing. What financial impact is long COVID causing?
Base: Those whose long COVID has had an impact on their financial wellbeing (n=47)
FINANCIAL IMPACT OF LONG COVID - Unaided
44

Better access to and support from a doctor and specifically a family doctor, treatment / medication,
and additional information / counselling would help cancer patients and caregivers who have had, or
have, long COVID to better overcome their symptoms
Better access / support from a (family) doctor
Treatment / medication / cure
Information / counselling
Better access to a long covid clinic / specialist
Psychotherapy
Physiotherapy
Housekeeping service (free)
Financial support
Diagnosis / test
More research / studies
Specialist
Others
None / nothing in particular / I don't know
13%
13%
11%
8%
4%
4%
4%
4%
3%
3%
3%
10%
34%
Q24. What support / services, if available to you, would help you better in overcoming symptoms of long COVID?
SUPPORT / SERVICES NEEDED TO OVERCOME SYMPTOMS OF
LONG COVID - Unaided
Free health care services, help line, breathing
enhancer, in-home cooking service, support
programs / groups, awareness / media coverage,
more frequent treatments, work policies to take
time off
55+: 18%
Female: 17%
Female only
Male only
55+ only
45

Respondents feel that the support they need to overcome long COVID symptoms involved GPs
and other support / services that may require a referral from a GP
Q24. What support / services, if available to you, would help you better in overcoming symptoms of long COVID?
SUPPORT / SERVICES NEEDED TO OVERCOME SYMPTOMS OF
LONG COVID
“Having a family
doctor” - QC “Having a GP would help to
get a referral for some sort of
physio or to a respiratory
treatment would help greatly.
It's next to impossible to even
get a phone appointment with
the urgent care place and we
no longer have any walk in
clinics in our city. I don't want
to and have avoided the
emergency department as it's
not the place to go to and they
are overwhelmed there as
well.” - BC
“Fewer months of waiting at the
specialized clinic. More knowledge
from GPs - I would have been referred
to it sooner instead of fighting for
months to be.” - QC
“Patient self-referral to
long covid supports for
when GPs brush your
symptoms off.” - ON
“Proper
assessment,
treatment plan and
specialized service
providers.” - SK
“Any direction on
how to support
my immune
system in
recovery.” - ON
“Free caregiver
services.” - ON
“Better and easier access to healthcare
providers who actually know about long COVID
and where you don’t have to be a patient at that
particular hospital. Having family doctors gain
knowledge about what can be done with
patients to manage/treat long COVID.” - ON
46

Fatigue, anxiety / depression, reduced quality of life, and feelings of having to be more careful are all
new “normal” as someone living with cancer and experiencing / having experienced long COVID
Fatigue / lack of energy
Reduced quality of life / wellbeing
Being more careful / follow health measures
Isolation
Weakness / reduced physical capacity
Accept and learn to live differently
Frustration of struggling
Other
Nothing has changed
18%
15%
11%
11%
10%
9%
8%
7%
6%
24%
14%
Q25. According to you, what is the new “normal” as someone living with cancer and experiencing / having experienced long COVID?
NEW “NORMAL” LIVING WITH CANCER AND EXPERIENCING /
HAVING EXPERIENCED LONG COVID - Unaided
Pain; Memory, concentration or sleep
problems; Slower pace of life; Reduced
working hours; High sensitivity of smell /
phantosmia; Considering medical assistance
in dying (MAID); Immunocompromised; Not
being understood
<55: 28%
ON: 2%
47

Lack of energy leading to having to leave their full-time position and decreased quality of life in
general are not uncommon reports for cancer patients who experience / experienced long COVID
Q25. According to you, what is the new “normal” as someone living with cancer and experiencing / having experienced long COVID?
NEW “NORMAL” LIVING WITH CANCER AND EXPERIENCING /
HAVING EXPERIENCED LONG COVID
“Accepting that I may
never regain physical
and mental stamina I
had pre-Covid.” - ON
“Decreased quality of
life.” - ON
“Generally being fatigued in the
afternoon. If I can I will have a brief nap. I
have had to leave a full-time position and
go to part-time as my body cannot handle
so many hours of work.” - AB
“New normal life is no life at all, just a
burden on all around me. MAID is very
much on my mind.” - MB
“Having energy levels similar to levels
during cancer treatment. Inconsistent
energy, chronic pain, increased brain
fog and memory issues. Needing a lot of
extra time to complete tasks or inability
to do tasks altogether. Inability to
maintain focus. I recently caught a virus
and it took 5 weeks to recover then only
days later caught Norovirus and was
sick another week. Challenging to live a
normal life with a further compromised
immune system. Challenging to get
others to understand the severity of the
impact long COVID has had on me. The
denial in the medical field and public is
frustrating and isolating. I work hard to
not let it negatively affect me but it’s a
constant frustration.” - AB
“Things are no longer “normal”.
The side effects and symptoms
have changed my life and things
will never go back to normal.” -
ON
“Once cured
from cancer and
long covid is
gone, life is really
just normal as
before.” - BC
48

BACKGROUND / RESPONDENT PROFILE
49

RESPONDENT PROFILE – PATIENTS
Tend to skew older: 58 YEARS on average
Fairly regionally representative
across Canada
QUE 31%
(37)
ON 38%
(45)
AB 10%
(12)
BC 11%
(13)
SK 3%
(4)
ATL 3%
(3)
MB 3%
(4)
BREAST (25%) and LYMPHOMA (11%) cancer
account for about one-third of cases.
Other cancers among ~1 in 11 patients include prostate,
lung, and skin cancer (excluding melanoma).
Stage 1
15%
Stage 2
13%
Stage 3
13%
Stage 4 /
Metastatic
6%
Remission
39%
1 in 9 (13%) say they are unsure of their stage of cancer.
<6 MONTHS
8%
6 MO-<2 YEARS
15%
2-5 YEARS
39%
6-10 YEARS
39%
TIME SINCE
DIAGNOSIS
varies greatly
among patients;
~1 IN 4
were diagnosed in
the PAST 2
YEARS.
32%
68%
Good mix of locations by population
RURAL: 27%
TOWN/CITY: 26%
URBAN/METRO: 47%
50
More Females
than Males
26% 11%

With a female leaning sample, 25% of the total respondents report being diagnosed with breast cancer
Breast cancer
Lymphoma
Lung cancer
Prostate cancer
Skin cancer (excluding Melanoma)
Colorectal cancer
Melanoma
Thyroid cancer
Bladder cancer
Leukemia
Uterine / endometrial cancer
Other cancer
26%
11%
9%
9%
8%
8%
8%
7%
6%
6%
6%
8%
S6. What type of cancer were you diagnosed with?
CANCER DIAGNOSIS
Brain cancer, kidney cancer,
cervical cancer, liver cancer,
bone cancer, sarcoma, ovarian
cancer, pancreatic cancer
Male: 16%
55+: 13%
<55: 14%
<55: 12%
QC: 0%
QC: 0%
ON: 0%
51

Three in ten respondents report having Anxiety or Hypertension / high blood pressure. Overall, 89%
of respondents report having some other chronic health condition
Anxiety
Hypertension / high blood pressure
High cholesterol
Osteoarthritis
Migraine
Skin conditions
Depression
Type 1 or Type 2 Diabetes
Thyroid disorders
Asthma
Heart / cardiovascular disease
Obesity
Insomnia
EE / GERD
Other
None
29%
28%
19%
18%
17%
17%
16%
15%
15%
13%
12%
12%
11%
10%
17%
11%
Q1. Do you currently have any chronic health condition, other than cancer? / As far as you know, does your caregiver currently have any chronic health condition?
OTHER CHRONIC HEALTH CONDITIONS
COPD, Irritable bowel syndrome (IBS),
Rheumatoid arthritis, Glaucoma,
Osteoporosis, Ulcerative colitis, Age-Related
Macular Degeneration (AMD),
Fibromyalgia, Psoriasis, Crohn’s disease,
Kidney diseases, Epilepsy, Lupus
52

TOTAL ON QC ROC MALE FEMALE 18-54 55+
n=119 n=45 n=37 n=37 n=38 n=81 n=43 n=76
Anxiety 29% 24% 38% 27% 18% 35% 51% 17%
Hypertension / high blood pressure 28% 20% 30% 35% 34% 25% 12% 37%
High cholesterol 19% 22% 19% 16% 29% 15% 9% 25%
Osteoarthritis 18% 20% 19% 16% 16% 20% 7% 25%
Migraine 17% 9% 24% 19% 5% 22% 21% 14%
Skin conditions 17% 13% 16% 22% 13% 19% 16% 17%
Depression 16% 22% 5% 19% 16% 16% 23% 12%
Type 1 or Type 2 Diabetes 15% 11% 16% 19% 18% 14% 7% 20%
Thyroid disorders 15% 16% 14% 16% 16% 15% 19% 13%
Asthma 13% 9% 14% 19% 8% 16% 16% 12%
Heart / cardiovascular disease 12% 13% 5% 16% 11% 12% 7% 14%
Obesity 12% 11% 3% 22% 11% 12% 14% 11%
Insomnia 11% 13% 14% 5% 13% 10% 7% 13%
EE / GERD 10% 9% 8% 14% 8% 11% 5% 13%
Other 17% 22% 11% 16% 8% 21% 14% 18%
None 11% 18% - 14% 11% 11% 16% 8%
Other Chronic Health Conditions – in detail
OTHER CHRONIC HEALTH CONDITIONS
Q1. Do you currently have any chronic health condition, other than cancer? / As far as you know, does your caregiver currently have any chronic health condition?
53

S9. Do you have a caregiver or access to a caregiver when needed? / S13. What is your relationship to your caregiver?
Base: Total Respondents (n=119) / Those with a caregiver who developed long COVID (n=5)
CAREGIVERS
Have a Caregiver or Access
to a Caregiver
58%
Of the 5 patients with caregivers who have had their caregiver
develop long COVID:
4 say their caregiver is a family member – 3 of them say their family
member lives with them.
The last patient says their caregiver is a close friend, as close as family,
but not blood related
54

Top Box Ratings TOTAL ON QC ROC MALE FEMALE 18-54 55+
n=119 n=45 n=37 n=37 n=38 n=81 n=43 n=76
Ability to exercise 41% 38% 43% 43% 34% 44% 47% 38%
Overall state of health and wellbeing 34% 36% 32% 35% 24% 40% 42% 30%
Ability to participate in hobbies, sports,
volunteering or other such activities
34% 36% 41% 27% 18% 42% 33% 36%
Ability to participate in social engagements 31% 31% 30% 32% 26% 33% 33% 30%
Ability to go back to work (inside or outside the
home)
30% 31% 27% 32% 24% 33% 40% 25%
Time to care for others in family 29% 36% 19% 30% 21% 32% 33% 26%
Mental health 28% 31% 24% 27% 21% 31% 42% 20%
Diet/ nutrition 20% 27% 8% 24% 5% 27% 21% 20%
Financial wellbeing 19% 16% 16% 27% 8% 25% 35% 11%
Impact of Having COVID on Other Aspects of Life – in detail (Top Box)
56

@leger360 /LegerCanada /company/leger360 @leger360
leger360.com

CCSN Long Covid FINAL.pptx

Recommended

Recommended

More Related Content

Similar to CCSN Long Covid FINAL.pptx

Similar to CCSN Long Covid FINAL.pptx (20)

More from Canadian Cancer Survivor Network

More from Canadian Cancer Survivor Network (20)

Recently uploaded

Recently uploaded (20)

CCSN Long Covid FINAL.pptx