Patient-Reported Characteristics and Care-Seeking among Canadian Adults with Chronic Pain: An Online Cross-Sectional Survey

ABSTRACT

Background

The objective of our study was to describe the clinical characteristics and care-seeking of Canadian adults living with chronic pain.

Methods

We disseminated a 41-item online survey, in French and English, through social media and pain organizations from February to May 2023, to characterize respondents’ demographics, their chronic pain, and utilization of health services. Eligible individuals were ≥18 years, resided in Canada, and had persistent pain for ≥3 months.

Results

We acquired 770 completed surveys, predominantly from females (90%) aged 35–65 years (76%). Most (60.3%) reported living with chronic pain for ≥10 years. Average pain intensity was often moderate (58%) or severe (24%). Respondents were more likely to report frequent use of cannabis (OR 5.24; 95%CI 3.09–9.39) and never or rarely engaging in physical activity (OR 9.36; 95%CI 6.18–14.8) after developing chronic pain.

Most (52%) reported no current engagement with a health care provider for their chronic pain. Past treatments included pain clinics (96%), physiotherapy (69%), opioids (56%), complementary and alternative medicine (47%), cannabis (42%), psychotherapy (35%), and interventional procedures (22%); however, current use of any of these modalities was significantly lower (ORs ranged from 0.32 to −0.06). Most respondents indicated that treatment to date had resulted in ≤40% pain relief (55%) and ≤40% functional improvement (56%); they were either dissatisfied (29%) or strongly dissatisfied (24%) with their care.

Conclusion

Canadian adults living with chronic pain who responded to our survey indicated long durations of moderate to severe pain that interfered with daily activities, and most were dissatisfied with their care.

Introduction

Chronic pain affects between 20% and 30% of people worldwide, including 8 million Canadians.^1–3 The International Association for the Study of Pain (IASP) defines chronic pain an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage, lasting more than 3 months.⁴ While chronic secondary pain has discernible etiology, chronic primary pain persists beyond the normal duration of tissue healing and lacks the acute warning function of physiologic nociception,^5,6 suggesting that it is a distinct medical condition rather than a symptom of underlying pathology. In 2019, costs (e.g., healthcare costs, productivity loss) associated with chronic pain in Canada were more than $39 billion.^7,8 Chronic pain has a profound impact on the physical, mental, emotional, social, and spiritual wellbeing of individuals, with nearly 40% reporting substantial impairment in their quality of life.^2,9,10 Management strategies and individual treatment responses are highly variable, depending on the type of chronic pain, patient, health care provider, and available resources.^11–16 Inadequate pain relief, characterized by a lack of important pain reduction and/or improvement in function, has been reported by up to 50% of people living with chronic pain in North America and Asia.^17–19

In 2019, the Canadian Pain Task Force reported that many Canadians may not have access to adequate pain management services,²⁰ which refers to tailored treatments and interventions to address biological, social, and psychologic aspects of pain. The Task Force acknowledged that these data were from the STOPPAIN project which focused on multidisciplinary clinics, and that little was known about other types of pain services.²¹ In 2021, the Canadian Pain Task Force recommended expanded surveys to capture more comprehensive data on the impact of chronic pain and effectiveness of treatment.²² Previous population studies on chronic pain in Canada have focused on restricted geographic locations and/or information on treatments.^8,23,24 As such, we conducted a survey of Canadian adults living with chronic pain to inform characteristics of this population, care-seeking and satisfaction with care.

Methods

Study design

Our study adhered to the Checklist for Reporting of Survey Studies (CROSS), integrating elements from STROBE, CHERRIES, and SURGE guidelines to ensure comprehensive reporting of observational, survey-based, and online research methodologies.²⁵ With the assistance of pain clinicians, methodologists, and people living with chronic pain, we developed a 41-item cross-sectional survey to investigate characteristics of Canadians living with chronic pain and their treatment experiences. Our questionnaire incorporated current terminology and definitions from the IASP, including chronic primary and secondary pain.²⁶ We pretested the final questionnaire with three people living with chronic pain who commented on the clarity and comprehensiveness of the survey and the time required for completion (approximately 20–30 minutes). Pretest respondents provided feedback, including but not limited to organization, wording, and redundancy, all of which were incorporated in our final version. We translated the survey into French to facilitate completion in both of Canada’s official languages and two French‑speaking members of the team validated the wording. Our study was approved by the Hamilton Integrated Research Ethics Board (HiREB). A copy of our survey is available in the Appendix.

Survey administration

From February 14 to May 31, 2023 (15 weeks), we disseminated our survey through web-based hyperlinks and QR codes distributed via community patient associations, pain organizations, research networks, and social media platforms, Facebook and X (formerly known as Twitter). English organizations included the Alberta Association of Physiotherapy (albertaphysio.com), Arthritis Society – Northeast Ontario (arthritis.ca), Canadian Arthritis Patient Alliance (arthritispatient.ca), Canadian Mental Health Association (cmha.ca), Canadian Mental Health Association of NS (novascotia.cmha.ca/), Canadian Migraine Society (migrainesociety.ca), Canadian Musculoskeletal Rehabilitation Research Center (mskrehabnet.com), Canadian Spondylitis Association (sparthritis.ca), Chronic Pain Center of Excellence for Canadian Veterans (veteranschronicpain.ca), Chronic Pain Network (cpn-rdc.ca), Fibromyalgia Association of Canada (fibrocanada.ca), Fibromyalgia Canada (facebook.com/groups/fibrocanada), Fibromyalgia London Ontario (fibrosupportnetwork.ca), Fibromyalgia Support Group – Newfoundland and Labrador (facebook.com/groups/111741402510036/), Fibromyalgia Support Group – North Bay Ontario (fibromyalgianorthbay.ca), Fibromyalgia Support Group – Winnipeg (fmswinnipeg.com), HELP AB (helpalbertaspain.com), HELP Ontario’s Pain (painontario.ca), the Michael G. DeGroote National Pain Center (npc.healthsci.mcmaster.ca), Migraine Canada (migrainecanada.org), Migraine Warriors Alberta Support Group (facebook.com/groups/355353438279969), Ontario Rehab Alliance (ontariorehaballiance.com), Pain BC (painbc.ca), People in Pain Network (pipain.com), Saskatchewan Pain (saskpain.ca), Saskatchewan Pelvic Pain and Endometriosis Warriors (facebook.com/groups/SaskEndoWarriors/), and the Society of Alberta Occupational Therapist (saot.ca). French organizations included Association de Fibromyalgie – région de Québec (fibromyalgie-quebec.com), Association de la Fibromyalgie de l’Estrie (fibromyalgie.ca), Association québécoise de la douleur chronique (douleurquebec.ca), and Société québécoise de la douleur (sqd.ca).

Interested individuals were directed to a LimeSurvey platform containing the details of our study with video instructions. After providing consent electronically, individuals were required to indicate the following screening questions to confirm eligibility: (1) 18 years or older, (2) residing in Canada, (3) fluent in English and/or French, and (4) lived with pain that had persisted for at least 3 months. LimeSurvey makes it possible to collect and store encrypted data in a local secure server. We enabled LimeSurvey’s online “cookie” feature to prevent repeated participation of respondents (only one completed survey per IP address was permitted). No incentives were provided for survey completion.

Survey variables

The first part of the survey acquired demographic information (e.g., age, ethnicity, sex, gender) and details on respondent’s pain such as location(s), perceived cause(s), diagnoses, and intensity. The second part inquired about utilization of health services, treatment response, and impact of their pain on function and daily activities. We used standardized short-forms of Patient-Reported Outcome Measurement Information System (PROMIS) domains from the National Institute of Health (NIH) minimum dataset to assess pain intensity (SF3a), pain interference (SF4a), and social isolation (SF4a).²⁷ Response options for PROMIS questionnaires consist of 5-point Likert scales, and interpretation of results using T-scores has been validated in several populations including Canadians living with chronic pain.^28–32

We collected data on comorbidities, substance use, and engagement in physical activity before and after the development of chronic pain through self-report. We also asked respondents to indicate current and past treatments sought for chronic pain, as well as the overall impact of care on pain and function. Regarding pharmacotherapy, we specifically focused on the use of opioids and cannabis. The use of opioids for chronic pain is most prevalent in North America;³³ however, recent guidelines recommend that they should only be offered after available non-opioid therapy has been optimized and only to individuals without factors that increase the risk of serious harm. Cannabis has emerged as a possible replacement for opioid therapy,³⁴ and 20% of Canadians endorse past-year use for therapeutic purposes, recreational purposes, or both.^35,36

Statistical analysis

All survey responses were populated into a de-identified database, with a unique identifier number assigned to each respondent. As respondents were permitted to skip questions, missing values were present, and only reported data contributed to our analyses. If respondents completed <50% of survey items or were missing data for main variables, such as demographics, pain location, perceived etiology, and treatments, their questionnaire was removed from all analyses.

We summarized survey data using descriptive statistics. Categorical variables were presented as frequencies and percentages. Continuous variables were presented as the mean and standard deviation (SD) if normally distributed, or the median and inter-quartile range (IQR) if not. Scores from the PROMIS survey instrument were converted to T scores according to algorithms provided in the PROMIS Scoring Manuals.³⁷ A T-score of 50 represents the average of the reference population, and 10 is equivalent to one SD, with higher values suggesting worse pain intensity, pain interference, and social isolation.³⁸

For categorical data, we used McNemar’s test to calculate the odds ratio (OR) with an associated 95% confidence interval (CI) when the data were paired (e.g., comparing substance use before versus after the development of chronic pain, utilization of treatments in the past versus present). If a response category had less than 10 respondents, then, we merged categories (e.g., “frequently” and “always” into “frequently or always” as shown in Table 4) to exceed this threshold and ensure the reliability of the statistical analysis. All analyses were performed using Stata (StataCorp, Release 17.0, College Station, TX).

Table 1.

Demographic Information (N = 770*).

	Count	%		Count	%
Age Group			Receiving Disability Benefit
Less than 35	80	10.4	None	492	63.9
35 – 44 years	155	20.1	Group benefit	85	11.0
45 – 54 years	221	28.7	Veterans benefit	54	7.0
55 – 65 years	206	26.8	Education
More than 65	108	14.0	University	336	43.6
Sex			College	252	32.7
Female	692	89.9	High school	148	19.2
Male	76	9.9	Occupation
Gender			Services/Sales	69	9.0
Female	679	88.2	Clerical	139	18.1
Male	77	10.0	Professional	199	25.8
Non-binary	13	1.7	Manager	76	9.9
Social Group			Employment
Disability	217	28.2	Modified	98	12.7
2SLGBTQIA+	51	6.6	Unemployed	196	25.5
Racialized	24	3.1	Income
Immigrants, Refugee	17	2.2	Under $40,000	212	27.5
Veterans	6	0.8	$40,000 to $59,999	99	12.9
Indigenous	16	2.1	$60,000 to $79,999	93	12.1
Family History: Chronic Pain			$80,000 to $99,999	81	10.5
Yes	410	53.2	$100,000 or higher	186	24.2

* Note, “prefer not to answer” or items with count less than 5 omitted; % are not mutually exclusive.

Results

Study respondents

A total of 852 individuals from all Canadian provinces provided consent to complete our online survey; however, 3 did not meet eligibility criteria and 79 were missing data for main variables or completed <50% of questionnaire items, resulting in 770 usable surveys from respondents from all 13 Canadian provinces and territories (Fig. 1). Respondents were predominantly female (90% [682 of 770]) between the ages 35 and 65 years (76% [582 of 770]) who had completed post-graduate education (76% [588 of 770]). More than one third (38% [293 of 770]) reported changes in their employment after developing chronic pain with 26% (196 of 770) being unable to work. Forty percent (311 of 770) reported a total household income of less than $60,000 per year. Approximately half (53% [410 of 770]) reported immediate family members that lived with chronic pain (Table 1).

Figure 1.

Geographical location of respondents (n = 770).

Characteristics of chronic pain

Based on PROMIS pain scales, half of respondents had lived with chronic pain for more than 15 years (51%; 393 of 770), and most indicated moderate (58% [444 of 770]) or severe (24% [182 of 770]) average pain severity that interfered with social activities either quite a bit (21% [164 of 770]) or very much (48% [372 of 770]). Although 74% (566 of 770) reported being around someone else 6–7 days a week, almost half (45% [349 of 770]) agreed that they felt isolated “usually or always” (Table 2).

Table 2.

Pain characteristics and experiences (N = 770*).

		Count	%					Count	%
Pain Intensity on Average					Feeling Isolated
	Mild	112	14.5			Never		64	8.3
	Moderate	444	57.7			Rarely		110	14.3
	Severe	182	23.6			Sometimes		121	15.7
	Very severe	26	3.4			Usually		216	28.1
Pain Intensity at Worst						Always		133	17.3
	Mild	24	3.1		Being with Someone Else
	Moderate	210	27.3			0-1 days per week		118	15.3
	Severe	370	48.1			2-3 days per week		42	5.5
	Very severe	164	21.3			4-5 days per week		27	3.5
Pain Interfering with Daily Activities						6-7 days per week		566	73.5
	A little bit	100	13.0		Duration of Pain
	Somewhat	128	16.6			3 months to < 2 year		23	3.0
	Quite a bit	270	35.1			2 to < 5 years		91	11.8
	Very much	261	33.9			5 to < 10 years		139	18.1
Pain Interfering with Social Activities						10 to < 15 years		73	9.5
	A little bit	84	10.9			15 to < 20 years		96	12.5
	Somewhat	90	11.7			20 years or more		297	38.6
	Quite a bit	164	21.3
	Very much	372	48.3

*Note, “prefer not to answer” or items with count less than 5 omitted in this table.

When asked to consider their most significant chronic pain complaint, 79% (608 of 770) reported having 2 or more body parts affected concurrently. Most respondents (76% [585 of 770]) also reported other, less significant chronic pain. Common locations for the most prominent pain complaints were the lower back (44% [339 of 770]), neck (41% [319 of 770]), and head/face (38% [289 of 770]) (Fig. 2). The majority of respondents perceived that their complaints were not the result of a specific disease or injury (chronic primary pain; 58% [408 of 770]). Among those that identified a specific cause of their chronic pain (i.e., chronic secondary pain), usual sources were degenerative changes (31% [243 of 770]), nerve damage (28% [215 of 770]), or injury (22% [172 of 770]) (Fig. 3). The most common self-reported diagnoses for their most significant chronic pain, including both primary and secondary types, were fibromyalgia (32% [246 of 770]), migraine headaches (28% [216 of 770]), and osteoarthritis (27% [208 of 770]). Another 16% (123 of 770) indicated that fibromyalgia contributed to their less intense chronic pain, and 12% (95 of 770) reported having chronic post-surgical pain (Fig. 4).

Figure 2.

Locations of most significant and other chronic pain (n = 770).

*Joints refer to the elbow, wrist, knee and ankle.

Figure 3.

* Respondents could report more than one cause.

Figure 4.

Self-reported chronic pain diagnoses (n = 770)*.

*Respondents could report more than one diagnosis, and some categories included multiple diagnoses.

Co-morbidity and substance use

Approximately half of respondents (47% [362 of 770]) had medical and/or psychiatric co-morbidity before developing chronic pain, which increased to 79% (535 of 770) afterward. The most commonly reported comorbidity associated with chronic pain was sleep disorders, which were more likely to be reported after the development of chronic pain (OR 3.4; 95%CI 2.6 to 4.4) (Table 3). The relationship between chronic pain and substance use was variable. After developing chronic pain, respondents indicated that their regular use of tobacco (OR 0.47; 95%CI 0.18 to 1.15) and alcohol (OR 0.70; 95%CI 0.43 to 1.14) decreased, whereas their use of either recreational or medical cannabis increased (OR 5.24; 95%CI 3.09 to 9.39). Individuals reported much higher rates of “never or rarely” engaging in physical activity after developing chronic pain compared to before (OR 9.36; 95%CI 6.18 to 14.8) (Table 4).

Table 3.

Comorbidity before and after diagnosis of chronic pain.

		Before diagnosis (N = 770a)		After diagnosis (N = 770a)		OR	95% CI
		Count	(%)	Count	(%)
No comorbidity		362	(47.0)	165	(21.4)	0.29	0.22–0.37
Cardiovascular (e.g., MI)		23	(3.0)	46	(6.0)	2.35	1.30–4.43
Neurology (e.g., stroke)		22	(2.9)	44	(5.7)	2.47	1.32–4.84
Musculoskeletal (e.g., OA)		128	(16.6)	239	(31.0)	2.63	1.98–3.53
Endocrinology (e.g., obesity, DM)		80	(10.4)	165	(21.4)	2.70	1.94–3.81
Rheumatology (e.g., RA)		34	(4.4)	62	(8.1)	2.27	1.35–3.94
Psychiatry (e.g., depression)		160	(20.8)	288	(37.4)	2.45	1.91–3.18
Sleep (e.g., OSA)		145	(18.8)	340	(44.2)	3.38	2.63–4.38

^aNote: “prefer not to answer” or items with count less than 5 omitted in this table. MI: Myocardial Infraction, OA: Osteoarthritis, DM: Diabetes Mellitus, RA: Rheumatoid Arthritis, OSA: Obstructive Sleep Apnea.

Table 4.

Substance use and activity level before and after diagnosis of chronic pain (N = 770).

		Before	(%)	After	(%)	OR	95% CI
Cannabis	Never	546	(70.9)	369	(47.9)	0.21	0.15–0.28
	Rarely	113	(14.7)	125	(16.2)	1.15	0.84–1.57
	Sometimes	71	(9.2)	118	(15.3)	1.87	1.33–2.65
	Frequently or Always	40	(5.2)	158	(20.5)	5.24	3.09–9.39
Tobacco	Never	499	(64.8)	620	(80.5)	12.0	6.49–24.6
	Rarely	64	(8.3)	12	(1.6)	0.13	0.06–0.28
	Sometimes	57	(7.4)	35	(4.5)	0.44	0.23–0.79
	Frequently	98	(12.7)	60	(7.8)	0.21	0.09–0.42
	Always	52	(6.8)	43	(5.6)	0.47	0.18–1.15
Alcohol	Never	145	(18.8)	239	(31.0)	3.94	2.65–6.00
	Rarely	276	(35.8)	274	(35.6)	0.98	0.74–1.31
	Sometimes	256	(33.2)	181	(23.5)	0.41	0.29–0.57
	Frequently or Always	93	(12.1)	76	(9.9)	0.70	0.43–1.14
Physical	Never or Rarely	47	(6.1)	299	(38.8)	9.36	6.18–14.8
Activity	Sometimes	233	(30.3)	288	(37.4)	1.43	1.14–1.81
	Frequently	334	(43.4)	145	(18.8)	0.28	0.22–0.37
	Always	156	(20.3)	38	(4.9)	0.11	0.06–0.18

Management of chronic pain

Most respondents received treatment by physicians for their chronic pain (88% [678 of 770]) since the onset of chronic pain, most commonly a family medicine provider (82% [633 of 770]) followed by a specialist in pain medicine (42% [320 of 770)) and a neurologist (26% [200 of 770]). Use of allied health services was high, with 68% [523 of 770] reporting having attended a massage therapist, physiotherapist, chiropractor, and/or psychologist (Table 5). Approximately half of respondents (52% [400 of 770]) reported no current support for their chronic pain; specifically, regular communication or follow-up from a healthcare provider (Fig. 5). Past use of treatments was high, ranging from 96% (742 of 770) for attending a pain clinic to 22% (166 of 770) for receipt use of interventional procedures; however, use of any treatment was significantly lower at the time of survey completion ranging from 94% lower odds for physiotherapy (OR 0.06; 95%CI 0.04 to 0.10) to 68% lower odds for interventional procedures (OR 0.32; 95%CI 0.20 to 0.49) (Table 6). At the time of the survey, 20% (154 of 770) were not receiving any treatment, including conservative, medical, and interventional, for their chronic pain, with no follow‑up plans. Among 614 individuals receiving active treatment, 241 (39%) attended tertiary pain clinics, 549 (89%) community clinics, and 176 (29%) both. Among those attending tertiary clinics, 54% (130 of 241) reported receiving care for more than 5 years in the same location. Most respondents indicated a partial response to treatment with approximately 25% reporting less than 20% pain relief or functional improvement, and 30% reporting between 20–40% pain relief or functional improvement in daily activities and social roles. Only 24% (181 of 770) reported that they were satisfied or very satisfied with treatment to date (Table 7).

Table 5.

Utilization of health services for chronic pain management since onset of chronic pain (N = 770^a).

		Count	%
Pain Specialists		320	41.6
	Tertiary Clinic	216	28.1
	Community Clinic	129	16.8
Medical Specialists		339	44.0
	Rheumatologist	121	15.7
	Neurologist	199	25.8
	Physiatrist	84	10.9
	Psychiatrist	72	9.4
Surgical Specialists		112	14.5
	Neurosurgeon	34	4.4
	Orthopedics	62	8.1
Family Physician		633	82.2
Allied Health Team		523	67.9
	Physiotherapist	286	37.1
	Chiropractor	246	31.9
	Psychologist	241	31.3
	Massage therapist	365	47.4

^aNote, “prefer not to answer” or items with a count less than 5 were omitted.

Figure 5.

Current Support from Health Care Professionals (n=770).

Table 6.

Past and current chronic pain treatments (N = 770).

	Past (%)			Currenta (%)		OR	95% CI	Current tertiary	Current non-tertiary
Physiotherapy		534	(69.4)	253	(32.9)	0.06	0.04–0.10	49 (19.4)	229 (90.5)
Psychotherapy		267	(34.7)	149	(19.4)	0.16	0.10–0.25	30 (20.1)	132 (88.6)
Opioids		431	(56.0)	248	(32.2)	0.07	0.04–0.12	79 (31.9)	192 (77.4)
Cannabis		324	(42.1)	162	(21.0)	0.14	0.09–0.21	27 (16.7)	143 (88.3)
CAM		363	(47.1)	227	(29.5)	0.24	0.17–0.34	32 (14.1)	216 (95.2)
Interventions		166	(21.6)	106	(13.8)	0.32	0.20–0.49	57 (53.8)	57 (53.8)
Pain Clinic Use		742	(96.4)	614	(79.7)	0.12	0.07–0.20	241 (39.3)	549 (89.4)

^aNote, some individuals reported using both tertiary and non-tertiary pain clinics concurrently. CAM: Complementary and Alternative Medicines

Table 7.

Response to current pain treatments (N = 770).

		Count	%
Pain relief
	Less than 20%	188	24.4
	20 to 40%	235	30.5
	41 to 60%	181	23.5
	61 to 80%	126	16.4
	81 to 100%	40	5.2
Functional Improvement
	Less than 20%	203	26.4
	20 to 40%	229	29.7
	41 to 60%	190	24.7
	61 to 80%	107	13.9
	81 to 100%	41	5.3
Satisfaction
	Very dissatisfied	186	24.2
	Dissatisfied	220	28.6
	Undecided	183	23.8
	Satisfied	126	16.4
	Very satisfied	55	7.1

Discussion

Canadian adults who responded to our survey typically reported many years of living with moderate to severe pain. Most presented with chronic primary pain that affected their spine and/or head. Reduced capacity to work and social isolation were common, and approximately half had immediate family members living with chronic pain. Both sleep disorders and physical disability were strongly associated with chronic pain, as was reduced physical activity. Use of tobacco and alcohol among respondents decreased after they developed chronic pain, whereas use of cannabis increased.

Our respondents reported high attendance to a range of physicians and other chronic pain professionals in the past, but far less at present with half currently attending no healthcare provider for their chronic pain. Similarly, our respondents indicated widespread use of a range of treatments in the past, but much less at present with 1 in 5 currently receiving no treatment for their chronic pain. Most reported partial improvements in pain or function because of treatment, and only 1 in 4 were satisfied with the management of their chronic pain.

Relevant literature

Current literature suggests a bidirectional relationship in which multiple biopsychosocial components, including lifestyle, preexisting medical conditions, emotional trauma, and socioeconomic status, may lead to the development of chronic pain, which in turn may influence those contributing factors, creating a vicious cycle.^3,39–41 Perception and experience of pain is idiosyncratic within a dynamic environment,⁴² which may further complicate response to specific therapies and medical interventions. The most common locations affected by chronic pain in our sample were the lower back, followed by neck and head/face, which is consistent with prior epidemiologic studies.^43–45 Fibromyalgia was the third most common self-reported diagnosis among our respondents, affecting almost 1 in 3. Past studies have found that 3% of the Canadian population meets criteria for fibromyalgia;⁴⁶ however, the large majority of our respondents were women who are affected 6 to 9 times as often as males.⁴⁷

One in eight respondents had chronic post-surgical pain, which is consistent with previous reports ranging from 2 to 23%.^1,23,48 Population data from Britain in 1998 and Canada in 2021 identified degenerative or medical conditions (25–34%), traumatic injury (11–47%), and surgery (2–23%) as the most common secondary causes of chronic pain.^23,24,48 In these studies, 20 to 26% of cases were classified as chronic primary or idiopathic chronic pain, a diagnosis that is made independently of biological or psychological contributors, unless better explained by another chronic pain condition.²⁶ A chart review of 644 chronic pain patients in the Greater Toronto Area during 2016–2017²³ showed that 16% had psychopathology with no biomedical cause of pain, which was significantly lower than the 58% of individuals in our study who reported no identifiable biomedical causes of their pain. Many of our respondents noted increased use of cannabis after developing chronic pain, and decreased use of alcohol and tobacco. This may reflect the increasing availability of cannabis in Canada^35,49 and the substitution effect shown in several prior studies.^50–52

In 2021, the Canadian Social Survey⁵³ showed that 13% of Canadians aged 15 and older reported feeling lonely often or always, compared to 45.4% in our sample population. Evidence has shown an association between social isolation and loneliness and poor physical and mental health, including heart disease, depression, dementia, and mortality;^54,55 however, the impact in the context of chronic pain remains to be elucidated. In our cohort, 53% reported having family members with chronic pain. This high rate is supported by a nested cohort of dyads (n = 2714) from the Scottish Family Health Study that demonstrated a 30% increase in odds of reporting chronic pain (OR 1.30, 95%CI 1.02 to 1.65) with a positive family history of chronic pain.⁵⁶

Our findings suggest decreasing care-seeking for chronic pain over time; half of our respondents had no current active engagement with a healthcare provider, defined as no support or regular communication. Similar results were reported in a cohort study of 2,929 adults with chronic musculoskeletal pain in Denmark, in which 39% had no or very few annual healthcare contacts over a 10-year follow-up.⁵⁷ A qualitative study exploring use of services for chronic pain identified four influencing factors: (1) availability of services, (2) perceived effectiveness, (3) alignment of services with patients’ values and preferences, and (4) recommendations from healthcare providers or others.⁵⁸

Reviews of the literature have found that many funded treatments for chronic pain are largely ineffective and potentially unsafe.⁵⁹ In our sample, the use of interventional procedures was common despite limited evidence for effectiveness.⁶⁰ The use of opioids and cannabis was also common, although evidence has shown that these treatments are not effective for most people living with chronic pain^61,62 and, in the case of opioids, may result in serious harms.⁶³ Converging evidence for the management of chronic low back pain,⁶⁴ fibromyalgia,⁶⁵ and chronic temporomandibular joint pain⁶⁶ suggests that conservative care directed at improving coping and increasing physical activation is likely to be helpful for many patients; however, such therapies are often unfunded through public health insurance.⁶⁷

Strengths and limitations

Strengths of our study include the pretesting of our survey questionnaire and providing our survey in both English and French. Further, we received responses from all 13 Canadian provinces and territories.

This study also has several limitations. First, this was an online survey which precludes our ability to calculate a response rate. Most of our respondents were non-racialized females with post-secondary education, which limits generalizations to other subsets of individuals. However, previous population studies on chronic pain in Canada, including the COPE cohort, have reported similar observations in their samples, including female predominance (89.5% in our study compared to 82.2–86.4%), age (mean age of 50.9 years compared to 46.6–49.7), duration of chronic pain (60.3% having pain duration > 10 years compared to 46–53.9%), education level (80.9% with post-secondary education compared to 78.5–80.8%), and pain locations.^24,68 Second, our findings are limited by reliance on self-reported data which may be affected by recall and social desirability bias. Self-reported diagnoses may be incongruent with physicians’ medical diagnoses; however, we found consistency between respondents’ perceived etiology and reported chronic pain diagnosis. Third, a high proportion of respondents indicated receiving treatments at non-tertiary pain clinics, where types of care provided may be highly variable.⁶⁹ Endorsement of physiotherapy or complementary and alternative medicine is similarly challenging to interpret, given that treatment may range from delivery of passive modalities only to guided physical activation. Use of treatment modalities can also be influenced by access and financial support. The majority of our respondents (63.9%) were not receiving disability benefits, and it is unknown how many had access to extended health benefits and coverage. We interpreted respondents who endorsed a lack of support from healthcare providers to mean they were not engaged in care for their chronic pain. However, alternate interpretations are that they remained engaged with a healthcare provider, but care was perceived as unhelpful, invalidating, insufficient, or not aligned with the patient’s needs and expectations. Finally, our reliance on cross-sectional data means that causal associations cannot be confirmed.

Implications

Our results are consistent with previous findings that adults living with chronic pain experience long durations of moderate to severe symptoms that interfere with their ability to function.^7,23 Our respondents reported extensive care-seeking that sharply declined over time. Approximately 5% of our respondents reported large reductions in their pain and increases in function which may have reduced care-seeking; however, most did not. As such, for most, discontinuation of care seeking may be due to limited effectiveness of care, dissatisfaction with healthcare provider interactions, and/or loss of hope. There may be a critical window of time during which health care professionals can make a meaningful impact, and a patient-centered, holistic approach to pain management may promote continuation of therapeutic relationships. Future research should evaluate the concordance between evidence and management options that are available for people living with chronic pain and explore why many Canadians living with chronic pain may have disengaged from the healthcare system.

Exercise is probably effective for many forms of chronic pain.^70–72 Our finding of a large decrease in physical activity among people living with chronic pain may be attributable to several issues, including fear of movement (pain catastrophizing), a gap in health care provider education, or lack of access to facilities/expertise. Efforts to improve engagement in regular activity among people living with chronic pain may be important, both to increase function, reduce social isolation, and mitigate the effects of deconditioning.

Disclosure statement

The authors have no conflicts of interest to disclose.

Funding

The study was funded by the Michael G DeGroote Institute for Pain Research and Care. Jason Busse is supported, in part, by a CIHR Research Chair in the prevention and management of chronic pain.

Ethical approval

We obtained ethical approval for our study from the Hamilton Integrated Research Ethics Board (HiREB), REB # 15867.

Role of funder

The funding organization was not involved in any aspect of the study, including its design, conduct, manuscript preparation, review, approval, or submission for publication.