Patient-reported wait times and the impact of living with chronic pain on their quality of life: A waiting room survey in chronic pain clinics in Ontario, Manitoba, and Quebec

Figures & data

Table 1. Patient Demographics.

​	Hamilton (n=93)  ​	London (n=100)  ​	Montreal Pediatrics  ​(n=100)  ​	Montreal (n=101)  ​	Ottawa (n=99)  ​	Winnipeg (n=100)  ​	Adult Total (n=493) ​
Gender	(n=92)	(n=99)	(n=96)	(n=99)	(n=98)	(n=99)	(n=487)
Female  ​	64 (69.6%)  ​	62 (62.6%) ​	82 (82.8%) ​	64 (64.6%) ​	64 (65.3%) ​	55 (55.6%)​	309 (63.4%)
Male  ​	27 (29.3%)  ​	37 (37.4%) ​	16 (16.2%) ​	35 (35.4%) ​	34 (34.7%) ​	44 (44.4%)​	177 (36.3%)
Other  ​	1 (1.1%)  ​	0 ​	0 ​	0 ​	0 ​	0 ​	1 (0.2%)
Prefer not to say  ​	0  ​	0 ​	1 (1.0%) ​	0 ​	0 ​	0 ​	0
Age	(n=90)	(n=98)	(n=99)	(n=99)	(n=98)	(n=99)	(n=484)
Range  ​	17-92 ​	21-90 ​	9-20 ​	19-89​	24-92 ​	20-86​	17-92
Median  ​	59​	59​	17​	56​	55.5 ​	62​	​ 59
Duration of Pain	(n=91)	(n=98)	(n=99)	(n=99)	(n=98)	(n=100)	(n=486)
Less than 3 months ​	0 ​	2 (2%) ​	5 (5.1%) ​	3 (3%) ​	2 (2%) ​	1 (1%) ​	8 (1.6%)
3 months to 6 months  ​	5 (5.5%) ​	11 (11.2%) ​	10 (10.1%) ​	2 (2%) ​	3 (3.1%) ​	2 (2%) ​	​23 (4.7%)
6 months to 1 year  ​	7 (7.7%) ​	7 (7.1%) ​	19 (19.2%) ​	9 (9.1%) ​	4 (4.1%) ​	6 (6%) ​	33 (6.8%)
1 year to 2 years  ​	17 (18.7%) ​	23 (23.5%) ​	28 (28.3%) ​	22 (22.2%) ​	26 (26.5%) ​	11 (11%) ​	99 (20.4%)
3 years to 5 years  ​	30 (33%) ​	19 (19.4%) ​	26 (26.3%) ​	22 (22.2%) ​	28 (28.6%) ​	22 (22%) ​	121 (24.9%)
6 years to 10 years  ​	11 (12.1%) ​	16 (16.3%) ​	6 (6.1%) ​	12 (12.1%) ​	18 (18.4%) ​	17 (17%) ​	74 (15.2%)
More than 10 years ​	21 (23.1%) ​	20 (20.4%) ​	5 (5.1%) ​	29 (29.3%) ​	17 (17.3%) ​	41 (41%) ​	​128 (26.3%)
Main Activity Last Week	(n=89)	(n=95)	(n=91)	(n=96)	(n=96)	(n=98)	(n=474)
Paid employment	29 (32.6%)  ​	33 (34.7%) ​	1 (1.1%) ​	21 (21.9%) ​	27 (28.1%) ​	21(21.4%) ​	131 (27.6%)
Vacation (from paid ​work)  ​	1 (1.1%)  ​	1 (1.1%) ​	0 ​	5 (5.2%) ​	0 ​	1 (1.0%) ​	8 (1.7%)
Looking for paid work  ​	1 (1.1%)   ​	0 ​	2 (2.2%) ​	1 (1.0%) ​	2 (2.1%) ​	2 (2.0%) ​	6 (1.3%)
Going to school  ​	2 (2.2%)  ​	1 (1.1%) ​	75 (82.4%) ​	2 (2.1%) ​	1 (1.0%) ​	1 (1.0%) ​	7 (1.5%)
Caring for children  ​	1 (1.1%)   ​	1 (1.1%) ​	1 (1.1%) ​	3 (3.1%) ​	2 (2.1%) ​	1 (1.0%) ​	8 (1.7%)
Household work  ​	5 (5.6%)  ​	10 (10.5%) ​	2 (2.2%) ​	7 (7.3%) ​	2 (2.1%) ​	12(12.2%) ​	36 (7.6%)
Retired  ​	25 (28.1%)  ​	31 (32.6%) ​	0 ​	23 (24%) ​	31 (32.3%) ​	34 (34.7%) ​	144 (30.4%)
Long term illness  ​	9 (10.1%)  ​	5 (5.3%) ​	0 ​	22 (22.9%) ​	13 (13.5%) ​	12(12.2%) ​	61 (12.9%)
Other  ​	15 (16.9%)  ​	12 (12.6%) ​	10 (11%) ​	12 (12.5%) ​	19 (19.8%) ​	14 (14.3%) ​	72 (15.2%)
Regular Healthcare Provider	(n=92)	(n=98)	(n=98)	(n=98)	(n=97)	(n=100)	(n=485)
Yes ​	87 (94.6%) ​	93 (94.9%) ​	85 (86.7%) ​	86 (87.8%) ​	92 (94.8%) ​	97 (97%) ​	455 (93.8%)
No ​	5 (5.4%) ​	5 (5.1%) ​	13 (13.3%) ​	12 (12.2%) ​	5 (5.2%) ​	3 (3%) ​	30 (6.2%)
Insurance Coverage for Prescription Medication	(n=91)	(n=99)	(n=97)	(n=99)	(n=97)	(n=100)	(n=486)
Yes ​	75 (82.4%) ​	80 (80.8%)​	81 (83.5%) ​	76 (77%) ​	81 (83.5%) ​	79 (79%) ​	391 (80.5%)
No ​	16 (17.6%) ​	19 (19.2%) ​	16 (16.5%) ​	23 (23%) ​	16 (16.5%) ​	21 (21%) ​	95 (19.5%)
Insurance Coverage for Long-term Care*	(n=87)	(n=88)	(n=87)	(n=97)	(n=96)	(n=98)	(n=466)
Yes  ​	44 (50.6%) ​	37 (42%) ​	46 (52.9%) ​	32 (33%) ​	25 (26.0%) ​	31 (31.6%) ​	169 (36.3%)
No  ​	43 (49.4%) ​	51 (58.0%) ​	41 (47.1%) ​	65 (67%) ​	71 (74.0%) ​	67 (68.4%) ​	297 (63.7%)

* Long term care insurance can cover some of the costs of a care facility or a caregiver in a person’s own home following an accident or illness. In Canada, many long-term care facilities and home-care services receive public funding, however, most also charge co-payments or extra fees for additional services that are not provided under the long-term plan.

Table 2. Appointment Characteristics.

​	Hamilton (n=93)  ​	London (n=100)  ​	Montreal Pediatrics  (n=100)  ​	Montreal (n=101)  ​	Ottawa (n=99)  ​	Winnipeg (n=100)  ​	Adult Total (n=493)
Referrer  ​	(n=92)	(n=98)	(n=99)	(n=99)	(n=98)	(n=100)	(n=487)
Patient’s usual primary care provider	43 (46.7%)  ​	64 (65.3%) ​	16 (16.2%) ​	38 (38.4%) ​	53 (54.1%) ​	63 (63%) ​	261 (53.6%) ​
Patient’s usual nurse practitioner  ​	0 ​	1 (1.0%) ​	1 (1.0%) ​	1 (1.0%) ​	1(1.0%) ​	1 (1.0%)​	4 (0.8%) ​
Walk-in clinic doctor  ​	1 (1.1%)  ​	1 (1.0%) ​	1 (1.0%) ​	1 (1.0%) ​	0 ​	2 (2.0%) ​	5 (1.0%) ​
Emergency room ​doctor  ​	1 (1.1%)​	2 (2.0%) ​	9 (9.1%) ​	4 (4.0%) ​	3 (3.1%) ​	1 (1.0%) ​	11 (2.3%)
Specialist physician  ​	40  (43.5)  ​	27 (27.6%) ​	66 (66.7%) ​	50 (50.5%)​	39 (39.8%)​	24 (24.0%) ​	181 (37.2%)
“I don’t know” ​	0 ​	0 ​	2 (2.0%) ​	0 ​	0 ​	6 (6%) ​	6 (1.2%)
Other ​	7 (7.6%) ​	3 (3.1%) ​	4 (4.0%) ​	5 (5.1%) ​	2 (2.0%) ​	2 (2.0%) ​	19 (3.9%) ​
Main reason(s) for visit	(n=92)	(n=98)	(n=99)	(n=99)	(n=98)	(n=100)	(n=487)
New Pain (acute,​ less than 3 months)  ​	4 (4.3%)​	7 (7.1%)​	6 (6.1%)​	6 (6.1%) ​	2 (2.0%) ​	4 (4.0%) ​	23 (4.7%)​
Chronic Pain (more ​than 3 months)  ​	85 (92.4%)​	87 (88.8%)​	93 (93.9%)​	92 (92.9%) ​	91 (92.9%) ​	98 (98%) ​	453 (93.0%)​
Cancer Pain  ​	2 (2.2%)​	0 ​	0 ​	1 (1.0%) ​	1 (1.0%) ​	4 (4.0%) ​	8 (1.6%)​
Post-operative pain  ​	8 (8.7%)​	5 (5.1%)​	2 (2.0%)​	10 (10.1%) ​	20 (20.4%) ​	5 (5.0%) ​	48(9.9%)​
Other  ​	10 (10.9%)​	3 (3.1%)​	1 (1.0%)​	7 (7.1%) ​	7 (7.1%) ​	4 (4.0%) ​	31 (6.4%)​
Method of transport to appointment ​	(n=92)	(n=99)	(n=94)	(n=97)	(n=94)	(n=99)	(n=481)
Regular bus  ​	2 (2.2%)  ​	1 (1.0%) ​	6 (6.4%) ​	10 (10.3%) ​	1 (1.1%) ​	4 (4.0%) ​	18 (3.7%)​
Special transport (i.e. handicap ​bus)  ​	2 (2.2%)   ​	3 (3.0%) ​	1 (1.1%) ​	7 (7.2%) ​	0 ​	5 (5.1%) ​	17 (3.5%)​
Someone came with me or dropped me off ​	28 (30.4%) ​	51 (51.5%) ​	26 (27.7%) ​	37 (38.1%) ​	6 (6.4%) ​	41 (41.4%) ​	163 (33.9%)​
Walked  ​	0  ​	0 ​	0 ​	1 (1.0%) ​	1 (1.1%) ​	0 ​	2 (0.4%)​
By personal car  ​	52 (56.5%)  ​	42 (42.4%) ​	43 (45.7%) ​	29 (29.9%) ​	18 (19.1%) ​	44 (44.4%) ​	185 (38.5%)​
Taxi/drive sharing service  ​	2 (2.2%)   ​	2 (2.0%) ​	0 ​	5 (5.2%) ​	2 (2.1%) ​	2 (2.0%) ​	13 (2.7%)​
Other  ​	6 (6.5%)  ​	1 (1.0%) ​	18 (19.1%) ​	8 (8.2%) ​	66 (70.2%)​	3 (3.0%) ​	84 (17.5%)​
Reasons for missing a health care appointment in the past	(n=92)	(n=99)	(n=98)	(n=99)	(n=98)	(n=100)	(n=488)
Didn’t have a way to get to the appointment (no transportation)	5 (5.4%)	4 (4.0%)	2 (2.0%)	13 (13.1%)	6 (6.1%)	8 (8.0%)	36 (7.4%)
It was too far away	2 (2.2%)	2 (2.0%)	5 (5.1%)	7 (7.1%)	5 (5.1%)	3 (3.0%)	19 (3.9%)
It was too expensive to get there	0 (0%)	3 (3.0%)	0 (0%)	5 (5.1%)	3 (3.1%)	3 (3.0%)	14 (2.9%)
I had no one to take me that day	7 (7.6%)	4 (4.0%)	1 (1.0%)	10 (10.1%)	5 (5.1%)	3 (3.0%)	29 (5.9%)
My pain was too severe	12 (13.0%)	10 (10.1%)	9 (9.2%)	22 (22.2%)	18 (18.4%)	18 (18.0%)	80 (16.4%)
I had to care for another person	2 (2.2%)	3 (3.0%)	0 (0%)	2 (2.0%)	3 (3.1%)	4 (4.0%)	14 (2.9%)
I couldn’t pay for the visit (e.g. no provincial insurance)	3 (3.3%)	0 (0%)	1 (1.0%)	6 (6.1%)	3 (3.1%)	2 (2.0%)	14 (2.9%)
My communication needs could not be met (e.g. interpreter)	0 (0%)	1 (1.0%)	0 (0%)	1 (1%)	0 (0%)	0 (0%)	2 (0.4%)
The office could not accommodate my physical needs (e.g. wheelchair, lifts)	0 (0%)	0 (0%)	0 (0%)	3 (3.0%)	1 (1.0%)	2 (2.0%)	6 (1.2%)
Forgot about the appointment	9 (9.8%)	11 (11.1%)	2 (2.0%)	6 (6.1%)	8 (8.2%)	6 (6.0%)	40 (8.2%)
I couldn’t attend because of work or school/exams	8 (8.7%)	7 (7.1%)	7 (7.1%)	4 (4.0%)	6 (6.1%)	3 (3.0%)	28 (5.7%)
Other	9 (9.8%)	4 (4.0%)	4 (4.1%)	5 (5.1%)	6 (6.1%)	8 (8.0%)	32 (6.6%)
Immediate Support (family or friends) who help with health care appointments if needed	(n=92)	(n=97)	(n=98)	(n=100)	(n=97)	(n=99)	(n=485)
Yes ​	82 (89.1%) ​	92 (94.8%) ​	93 (94.9%) ​	78 (78.0%) ​	85 (87.6%) ​	88 (88.9%) ​	425 (87.6%)
No ​	10 (10.9%) ​	6 (6.2%) ​	2 (2.0%) ​	16 (16.2%) ​	8 (8.2%) ​	7 (7.1%) ​	47 (9.7%)
Other ​	0 ​	1 (1.0%) ​	3 (3.1%) ​	5 (5.0%) ​	4 (4.1%) ​	4 (4.0%) ​	14 (2.9%)

Figure 1. Chronic pain clinic wait times across the six participating sites.

Figure 2. Impact of chronic pain on quality-of-life measures.

Figure 3. Other healthcare professionals seen by patients while waiting for their chronic pain clinic appointment (NP = Nurse Practitioner).

Table 3. Themes from qualitative analysis of free text responses.

Theme	Description	Sample Quote
System Navigation Issues	Going to and/or bouncing between multiple clinics, physicians, specialties to try to establish a diagnosis and/or manage pain. Trying to figure out how to get help with or without physician support; unclear path to pain clinics.	“Attempting to access different specialists, even with the help of my GP has been a slow process where my condition continued to degrade and where considerable expenses have been incurred and significant impact of my life.”
Administrative Issues	Problems with referrals (e.g., lost referrals or lengthy and/or complicated process).	“As time went on I called the office whereby I was informed that I was not on the referral list. After contacting the hospital it was determined that the referral was not done and this error was corrected. “​
Decreased Quality of Life	Negative personal impacts of living with chronic pain on lifestyle and activities of daily living.	“I have been drinking more alcohol, and taking Diloted (carefully) when needed to manage the pain. It is so horrible. I have left my life. I have 2 kids … […] My 8 yr old only know me as a person who cannot do [any]thing because of pain”
Distress	A sense feeling alone and unsupported, and a loss of hope.	“I can’t sleep, I can’t work, I’m in so much pain. I can’t get medication that I need. I feel devalued as a human and I feel like a junkie.”
Self-Advocacy	Patients advocating for themselves by initiating the pain clinic referral via their request and/or contacts pain clinic for information after referral for scheduling.	“I had to call repeatedly to ensure that progress was being made. I finally received an appointment for June 2022. Had I not repeatedly followed up I would still be waiting while dealing with unmanaged chronic pain.” ​
Coping Strategies	Range of techniques and efforts patients use to manage their pain	“Prior to being referred to the pain clinic I had also invested in chiropractic treatment, an inversion table, tens type device, ice packs and heating pads, topical ointments, etc., in an attempt to control the pain.”​
Communication	Patients not knowing what to expect, feeling uninformed about the true length of wait times, whether referrals were made, the types of issues they can bring to the pain clinic, and what the pain clinic can offer.	“I called many times over the summer and fall to get different answers. I wasn’t told the real truth of the wait time until the fall. I was then told it would still be 18 months probably! This is disgusting. Specialists and people who are answering the calls should be honest!! Stop giving people in pain HOPE, when that HOPE will not be coming for years!”
Distrust	Patients’ perception of not being believed or their concerns not being taken seriously by one or more physicians (paternalistic model of doctor-patient interactions)	“As I was told many times it’s impossible that I’m in this much pain, well I live it everyday and the pain is real.”

Data Availability Statement

The data that support the findings of this study are available from the corresponding author, C.L., upon reasonable request.