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

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. 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. 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 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. Demographic Information (N = 770*). * Note, “prefer not to answer” or items with count less than 5 omitted; % are not mutually exclusive.

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). A pie chart showing number of respondents by Canadian region, from 3 to 332 respondents. Geographical location of respondents (n = 770). 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. Pain characteristics and experiences (N = 770*). *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). A grouped horizontal bar graph titled, Locations of Chronic Pain left parenthesis N equals 770 right parenthesis. Legend: Most Significant Chronic Pain and Other Chronic Pain. X axis label is not shown; tick labels run from 0 to 400. Y axis lists body locations. Values shown at bar ends: Lower Back, Most Significant Chronic Pain 339, Other Chronic Pain 195. Neck, 319 and 182. Head and or Face, 289 and 120. Leg and or foot, 272 and 179. Hip and or Buttocks, 257 and 172. Joints asterisk, 246 and 188. Shoulder, 239 and 164. Upper Back, 213 and 120. Arm and or hand, 209 and 154. Entire body, 178 and 168. Stomach, 72 and 77. Chest, 65 and 56. Internal organs, 50 and 50. Genitals and or anus, 39 and 34. A grouped horizontal bar graph showing locations of most significant and other chronic pain. *Joints refer to the elbow, wrist, knee and ankle. Figure 3. A horizontal bar graph titled, Perceived Causes of Chronic Pain left parenthesis N equals 770 right parenthesis. X axis label, Count, range 0 to 500. Y axis label, Pain location, categories Headache, Neck Pain, Low Back Pain, Overall. Headache values: Primary Causes 204; Inflammation slash Cancer 30; Iatrogenic 17; Injury slash Accident 55; Nerve Damage 56; Degeneration 63; Unknown slash Unclear 50. Neck Pain values: Primary Causes 194; Inflammation slash Cancer 54; Iatrogenic 36; Injury slash Accident 102; Nerve Damage 97; Degeneration 135; Unknown slash Unclear 39. Low Back Pain values: Primary Causes 166; Inflammation slash Cancer 69; Iatrogenic 45; Injury slash Accident 97; Nerve Damage 148; Degeneration 175; Unknown slash Unclear 36. Overall values: Primary Causes 408; Inflammation slash Cancer 119; Iatrogenic 72; Injury slash Accident 172; Nerve Damage 215; Degeneration 243; Unknown slash Unclear 96. A horizontal bar graph showing perceived causes of chronic pain by pain location and overall. * Respondents could report more than one cause. Figure 4. Self-reported chronic pain diagnoses (n = 770)*. A horizontal bar graph showing self reported chronic pain diagnosis counts. *Respondents could report more than one diagnosis, and some categories included multiple diagnoses. Locations of most significant and other chronic pain (n = 770). Self-reported chronic pain diagnoses (n = 770)*. 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 = 770 a ) After diagnosis (N = 770 a ) 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 a Note: “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 Comorbidity before and after diagnosis of chronic pain. a Note: “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. Substance use and activity level before and after diagnosis of chronic pain (N = 770). 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 ). Figure 5. Current Support from Health Care Professionals (n=770). A pie chart showing lack of support from health care professionals, percent 4.9 to 43.6. 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 a Note, “prefer not to answer” or items with a count less than 5 were omitted. Table 6. Past and current chronic pain treatments (N = 770).   Past (%) Current a (%) 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) a Note, 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 Current Support from Health Care Professionals (n=770). Utilization of health services for chronic pain management since onset of chronic pain (N = 770 a ). a Note, “prefer not to answer” or items with a count less than 5 were omitted. Past and current chronic pain treatments (N = 770). a Note, some individuals reported using both tertiary and non-tertiary pain clinics concurrently. CAM: Complementary and Alternative Medicines Response to current pain treatments (N = 770).

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. 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 2016–2017 23 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 Survey 53 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 pain 66 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 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. 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.

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.