Canadians in Chronic Pain: Cost, access to treatment pose significant barriers for those suffering the most

One-in-five report living with significant chronic pain, most say they’d be better off if care more affordable

July 12, 2019 – For many Canadians, the activities and experiences that many of us take for granted are significantly hindered by something unseen by the naked eye: persistent, ongoing pain.

A new public opinion survey from the non-profit Angus Reid Institute, in partnership with Pain BC and Mindset Social Innovation Foundation, delves deeply into the lives of those who experience ongoing pain, in order to better understand its causes, effects and potential resolutions.

Overall, one-in-three Canadian adults (34%) say they are currently experiencing some form of pain that has lasted longer than three months. That said, for a core group of one-in-five (22%), that pain is considered significant, due to the considerable emotional and physical impact it has on their day-to-day activities. This represents millions of people within the Canadian population who are living with moderate to severe pain that interferes with their lives.

From their working lives, to sleeping habits, to personal relationships and mood, the often-invisible consequences of chronic pain are a harsh reality for many.

Consider that four-in-five Canadians experiencing significant ongoing pain (83%) say it prevents them from doing regular activities, and for more than half (57%), it contributes to anxiety and depression. Indeed, among those living with significant chronic pain, 23 per cent say they experience feelings that “life isn’t worth living.”

The importance of this issue is evident to nearly all Canadians. More than nine-in-ten say that every Canadian – regardless of income – should have access to pain treatment that works for them. This is not the current reality for many, however. Two-thirds of those experiencing ongoing pain (64%) say that if they could afford to pay for more of the available treatments offered, their discomfort and quality of life would be improved.

Canadians – whether they have personal experience of ongoing pain – are overwhelmingly supportive of proposed policy changes that could alleviate pain. Such proposals include increasing subsidies for those who cannot afford the treatments they need (89% say this would be worthwhile for government to pursue), to supporting more funding for research on effective therapies (89%), to increasing the number of treatments that are covered as a part of public health care (88%), this is an area of strong public support.

More Key Findings:

Lower-income households and women over the age of 35 significantly overrepresented in their prevalence of living with chronic pain

Three-quarters of Canadians who say they experience ongoing pain have had it for more than three years (76%). For three-in-ten (29%), this pain has lasted more than a decade

Eight-in-ten Canadians (79%) say they are concerned about the abuse of opioids due to pain. Among those who experience long-term pain, 17 per cent say they avoid opioids entirely and one-quarter (25%) curtail their usage of these types of medications because of health concerns

A sizable minority of Canadians living with chronic pain, including nearly four-in-ten (37%) of those with severe pain, have experienced difficulties in accessing prescription pain drugs because of their doctor’s or the healthcare system’s concerns about addiction and abuse

Cannabis is reported as effective by three-quarters (74%) of those who have used it to treat their pain. This is the highest number among all physical or medicinal treatment methods

Canadians are near-unanimous (92%) in their agreement that those living with pain should have access to pain treatment that works for them, regardless of income

About ARI

The Angus Reid Institute (ARI) was founded in October 2014 by pollster and sociologist, Dr. Angus Reid. ARI is a national, not-for-profit, non-partisan public opinion research foundation established to advance education by commissioning, conducting and disseminating to the public accessible and impartial statistical data, research and policy analysis on economics, political science, philanthropy, public administration, domestic and international affairs and other socio-economic issues of importance to Canada and its world.

INDEX:

Women more likely to live with ongoing pain

Income is a factor

Living with pain

Pain Experience Index

Who suffers least and most?

Emotional and Psychological Impacts One-in-five have felt life not worth living Frustration and hopelessness

Physical Impacts

How Canadians treat their pain

Which treatments work best?

Costs prevent many from accessing care

Those in pain are more critical of provincial healthcare

Doctors graded mostly favourably

Consensus on value of more support from government

What should be covered?

Opioids a source of anxiety; barriers to access remain

Part 1: Prevalence and Impact of Pain

Chronic pain affects millions of people in Canada and costs the country tens of billions of dollars in medical care and lost work. The medical system has, by many estimates, failed to keep pace, with treatment of this pain.

To understand prevalence, Canadians were asked whether they have had noticeable pain that either lasts or recurs for more than three months. One-in-three Canadians (34%) meet this definition. This statistic is significant, given that studies have found that Canadians dealing with chronic pain suffer from a worse quality of life than those dealing with chronic diseases such as lung or heart disease. Those in severe pain will be discussed in more detail throughout this report.

Women more likely to live with ongoing pain

Chronic pain is an experience that more than half of the population says they have dealt with at some point in their lives, with women over 35 reporting at the highest rates. Young men, meantime, are the least likely to say they’ve been dealing with this issue in an ongoing manner, though 16 per cent still do:

It is also worth noting that two-thirds of those dealing with pain are over the age of 45. Indeed, that age appears to be a key marker for separating Canadians who are currently dealing with ongoing pain, as seen in the following graph:

Income is a factor

There is a notable income angle to this discussion as well, which speaks to some of the broader issues that will be discussed in this study, including access to treatments and cost. The proportion of those dealing with chronic pain issues is considerably higher among Canadians with household incomes under $100,000 a year. The occurrence of chronic pain drops significantly at this income cut-off point:

Living with pain

Looking at the one-third of Canadians who self-identify as living with chronic pain, one can see a range of lived experiences. For example, the severity of pain diverges significantly. Most (61%) say that on average their pain is moderate, though more than half also say that, at its worst, the pain is severe (46%) or as bad as they could imagine (12%):

The length of time Canadians have spent with this pain is also varied. Older Canadians are much more likely to have been dealing with pain for a longer period of time, as one might expect, but notably, a significant portion of those who experience pain in all age groups have been dealing with this for at least three years. Among those over the age of 35, three-in-ten have been dealing with this pain for more than a decade:

Beyond personal experience, a significant number of Canadians are surrounded by chronic pain in their lives. More than half (54%) say they have a friend or family member dealing with this type of issue, and one-quarter (25%) say they spend time with someone who does.

Further, approximately one-in-ten Canadians (9%) are involved in caring for someone who has difficulties related to chronic pain. These measures of exposure help to provide a more contextualized picture. The table below shows the full slate of Canadians’ exposure to chronic pain:

Part Two: The Pain Experience

Pain Experience Index

The Angus Reid Institute was able to further segment individuals living with chronic pain into groups based on degrees of intensity and experience with pain, including the emotional and functional impact it has on their lives.

While the methodology and terminology used when discussing this topic can oftentimes change, in this report the Angus Reid Institute will focus in on this group of one-in-five Canadians living with “significant” pain. This group is categorized as being Severely or Moderately Affected by their pain. Others are relatively encumbered, i.e. Minimally Affected, but risk joining the two other groups if their pain worsens or persists.

As a percentage of the general population, the distribution breaks down as follows:

Who suffers least and most?

Note that everyone within these three groups, the Severely Affected, Moderately Affected and Minimally Affected, said they experience some ongoing pain that has lasted at least three months. That said, their experiences and the impact of their pain diverge significantly (See methodology at the end of this report).

There are also notable demographic differences between these groups.

First, women are found in each of the three groups at much higher rates than their male counterparts. Further, they are significantly overrepresented in the most extreme group, the Severely Affected, accounting for two-thirds (67%) of that population:

The age and gender distribution of the Severely Affected group indicates just how much Canadian women over 35 are shouldering the burden of chronic pain. Approximately six-in-ten (58%) of those in this Severe group are women over 35, with one-third over the age of 55.

Importantly, those who are experiencing pain across each of the three groups are more likely than the general population to have lower income levels. Further, those Severely Affected by pain are much more likely than the other cohorts to have household incomes under $50,000. Meanwhile, the Minimally Affected are twice as likely to have incomes over $150,000.

This becomes increasingly relevant when discussing access and affordability issues, which we will do shortly:

Emotional and Psychological impacts

In order to understand pain in Canada, it is worth considering how these lingering issues can affect a person’s life, both physically and emotionally.

These impacts are a key input in understanding and categorizing the three levels of ongoing pain (see methodology at end of report).

Overall, one-in-three Canadians (31%) who currently experience pain say it interferes significantly with their mood day-to-day. Another one-in-three (34%) say they feel a negative impact “to some degree.” Those in the Moderately Affected group are most likely to choose this middle option, while the Severely Affected are far and away the most negatively impacted when it comes to their mood:

Perhaps unsurprisingly then, those who have the most difficulty keeping their spirits up because of their pain are also the most likely to feel their relationships are being harmed because of how they feel physically. Two-thirds of Canadians in the Severe group say their relationships have been strained:

One-in-five have felt life not worth living

Among the Severely Affected, psychological impacts are particularly prevalent. Two-thirds (66%) from this group say they experience stress and anxiety as a result of their pain and 57 per cent say it has led them to depression. Those who are Severely Affected are also considerably more likely than those with Moderate or Minimal Pain to feel isolated, lonely or hopeless.

Most troublingly, one-third of those in the Severely Affected group say that they have felt at times that life is not worth living. Long-term pain sufferers are at a significantly higher suicide risk than the general population, and that documented data is affirmed in this study.

Virtually all those in the Moderately and Severely Affected groups have been negatively impacted in some way by their chronic pain. Only 6 per cent and 2 per cent of these groups, respectively, have not experienced any of the effects canvassed, compared to one-five (21%) among the Minimally Affected.

Frustration and hopelessness

The frequency and unpredictability of pain is a source of frustration for many.

As seen in the following table, four-in-ten who face pain issues say their pain is constant while slightly fewer say it is intermittent. The percentage of those facing constant pain is highest among the Severely Affected, a population that is also much more likely than the Moderately or Minimally Affected to report that their pain is both unpredictable (45%) and out of control (49%):

What this translates into is a significant amount of psychological stress, including frustration and pessimism among those who experience pain. Three-in-ten (31%) say they are pessimistic they will ever be fully free of pain, and half (52%) say they feel frustrated from day-to-day. As would be expected, the sentiments of those in the Moderate and Severe categories are considerably more negative than those of the Minimal:

One of the documented elements of ongoing pain is the hopelessness that it can generate as it persists. Demoralization can be a significant problem for those with pain to overcome. This study finds a significant group of Canadians saying they feel hopeless due to their pain. Close to three-in-ten Canadians with pain (27%) say this overall, rising to almost four-in-ten among the Severely Affected:

Physical Impacts

Three-in-ten Canadians who experience ongoing pain also find their day to day physical activities significant affected: (29%) say that it significantly hampers their basic mobility – the ability to walk comfortably – while a similar proportion say they are hindered to some degree. Half of the Severely Affected say their ability to walk is hampered to a great extent:

The same can be said of Canadians’ ability to get a good night’s rest. Roughly one-third (32%) of those who experience chronic pain say it interferes with their sleep substantially, while close to the same number (30%) say this it does to some degree:

Overall, among those dealing with pain, four-in-ten say their normal working lives have been disrupted, while close to the same number say it has become more difficult to enjoy their lives (see comprehensive tables).

Three-quarters of those who experience ongoing pain say that it has kept them from participating in activities and events that they would have, and the proportion rises to nine-in-ten among the most Severe cases.

For many, self-medication becomes part of trying to numb the agony, compounded by significant access barriers to both opioids (see Part Four) and non-pharmacological treatments (see Part Three). One-in-five (21%) say their pain has led them to take non-prescribed drugs, while similar proportions have turned to smoking (14%), alcohol (15%) or prescription drug overuse (15%). All three of the pain groups have at least one-in-ten individuals who have done each of these:

Part Three: Accessibility and Assessment

How Canadians treat their pain

In Canada, treatment of chronic pain offers a wide array of options that come with a similarly wide range of costs and availabilities. The most common avenues for treatment, pharmaceuticals, are the most common. Among those who are experiencing pain, 91 per cent say they’ve turned to such medication. Two-thirds have used over the counter medications (69%) while a similar number have been prescribed something for their pain (65%). One-third have used cannabis, often with a great deal of self-reported success, as will be discussed shortly.

Four-in-five (79%) have explored physical treatments such as exercise, yoga, or physical therapy, while three-in-ten have had to use medical treatments like surgery or medical devices.

Which treatments worked best?

Among the people who have used each, the treatment with the highest effectiveness rate was cannabis, with three-in-four (74%) users reporting that it was at least “quite effective” in managing their pain. On the other hand, over the counter (OTC) medications, the single most-commonly used treatment, had one of the lowest rates of effectiveness (38%).

*Hypnosis, support groups and other psychological treatments not shown due to small respondent sample sizes

Opinions regarding the effectiveness of treatments varies significantly between the three pain groups. For example, prescription pain medication is widely viewed as effective by the Minimally Affected, with three-quarters (76%) saying it contributed to making them feel better. This number drops to half (54%) among the Severely Affected.

The same can be said of physical therapy. While two-thirds (65%) of the Minimally Affected have found success with this type of treatment, just four-in-ten (42%) of the Severe group say the same. The higher intensity and persistence of pain for those in the Severely Affected group, often requiring multidisciplinary or highly specialized care rather than a single treatment, may help to explain this finding.

Notably, cannabis is found to be highly effective across each of the three groups:

At the same time, when asked if there are any treatments that they consider essential to managing their pain, respondents most frequently cited prescribed medications and over the counter (OTC) options. Prescription treatments appear especially critical for those experiencing severe pain.

Interestingly, for those Moderately or Severely Affected, cannabis is the third most-mentioned treatment, with about one-in-four from those groups describing it as essential to their pain management. Those in the Minimally Affected group are more likely to mention physical exercise/yoga.

*Treatments receiving at least 10% overall response displayed on graph

Costs prevent many from accessing care

For Canadians living with ongoing pain, particularly those Moderately or Severely Affected, the cost of various treatments represents a daunting obstacle. Two-thirds (66%) of those in the Moderate pain group and three-quarters (75%) of those in the Severe pain group believe they would be living with less pain today if they could afford to pay for more of the available treatments.

When respondents are asked about specific treatments they would use (or, use more) if they could afford it, many of the most frequently cited options are non-pharmaceutical. For example, only 7 per cent of people with ongoing pain mention physical therapy/physiotherapy as an essential treatment for managing their pain, but if it were more affordable for them, about three-in-ten respondents from all three pain groups say they would use it. Nearly half (45%) of the Severely Affected say the same of manual therapy.

For nearly all treatments discussed, people in the Severe pain group are more likely than those in the Moderately and Minimally Affected groups to say they would use the treatment if they could afford it.

Canadians of all income levels say they would use more services offered by the health care system if they were not prevented from doing so due to costs. For example, half of Canadians in pain say they would use more physical treatments like physiotherapy but are unable.

That said, on each of the four major categories of treatment, those with lower household income levels are more likely to say they would use more if they were financially viable. Overall, three-quarters of those in the lowest income bracket say there is at least one type of treatment they would use if they could:

The extent to which Canadians have health insurance coverage plays a significant role in their ability to access treatment. Overall, a significant proportion of those experiencing ongoing pain incur out-of-pocket costs for their treatments, with half (49%) saying they “mostly” or “always” pay for pain treatments themselves.

Approximately three-quarters (75%) of those who pay for at least half of their treatment say they would like to access some form of treatment that they consider cost-prohibitive. Notably, however, even a large proportion of those whose insurance coverage pays for most or all of their treatments say they would use more if cost were less of a factor:

Those in pain are more critical of provincial healthcare

While Canadians overall appear relatively divided on whether their provincial healthcare system sufficiently addresses the problem of chronic pain, those currently living with pain are much more critical.

The general population is more positive than negative, with 47 per cent saying their province does a good job and four-in-ten (39%) saying it does a poor job. Among those who are experiencing pain, just over half (53%) are negative in their appraisal, while fewer than four-in-ten are positive (37%):

Most, whether they have pain or not, would like to see the public health system do more to address the needs of those with ongoing pain issues:

This sentiment is one with which nearly all Canadians agree. Indeed, 92 per cent agree that “every Canadian – regardless of income – should have access to pain treatment that works for them” (see comprehensive data tables). Six-in-ten Canadians (60%) strongly agree with this sentiment. At the same time, significant concerns remain about the public health risks of allowing increased access to pain medications (see Part Five).

In terms of regional standards of healthcare, a majority of Canadians living with ongoing pain (54%) appear dissatisfied with their province’s current approach to chronic pain. In every region of the country except Quebec, the proportion of people who believe their provincial healthcare system is doing a poor job addressing the problem widely outpaces the proportion who believe it is doing a good job. This is especially true in Manitoba and Atlantic Canada, where seven-in-ten believe their province is failing to support those living with chronic pain.

Canadians near-unanimously agree that “people shouldn’t have to wait for months and months for pain treatment”: 95 per cent of the general population agrees with this statement.

This, however, is identified as a problem by a number of Canadians. The most common source of wait time frustration is when trying to access surgical care. One-in-three (33%) of those experiencing ongoing pain say they would likely have to wait six months or more to have surgery, while another one-in-five (18%) say other medical interventions would require a significant wait.

Doctors graded mostly favourably

One aspect of the health system that receives relatively high marks is the care those in pain receive from their doctors. Canadians who said they have ongoing pain were asked to evaluate a number of different areas as they relate to physician care, and most offer praise. Seven-in-ten (69%) say the doctor they saw, or have been seeing, was sympathetic and caring about their pain, while two-thirds (64%) say their doctor is knowledgeable and has done a good job helping them overall. Nonetheless, it is notable that while opinions of doctors are mostly favourable, about one-quarter give them a poor rating on most of the questions, as seen below:

Notably, while the majority of Canadians across each of the three Pain Experience groups tend to offer positive ratings of their doctors, those in the more Severe category are slightly more negative (see comprehensive tables).

Part Four: Remedies and policy propositions

Consensus on value of more support from government

There are many policies that have been proposed to address the issue of chronic pain including:

covering the costs of more pain treatments through public healthcare

subsidizing people who can’t afford pain treatment

expanding publicly funded research into new pain treatment therapies

Those experiencing chronic pain are near-unanimous in their support for such ideas, saying each would be worthwhile to undertake.

One proposal that appears to be more divisive is the prospect of increasing coverage for medicinal cannabis. While seven-in-ten (71%) of those experiencing pain still say this would “definitely” or “probably” be worthwhile, a higher degree of uncertainty surrounds the issue than with other policy options. This is also the case for expanding access to support groups, the only proposal canvassed where “definitely worthwhile” was not the most popular response.

Looking at this through the lens of the general public more broadly, support remains high. The proportion of Canadians saying each proposal is “definitely” worthwhile is somewhat diminished, but the total saying each is at least “probably” worthwhile remains similar overall:

What should be covered?

Currently, Canadian public healthcare coverage for chronic pain treatments is largely limited to empirically supported pharmaceuticals, often including opioid prescriptions. Some provinces, such as Ontario, Alberta and Quebec, do provide coverage for medically-required physiotherapy following an injury, with the condition that these services be provided in a government-funded clinic or hospital rather than by a private practitioner.

In British Columbia, residents eligible for First Nations Health Authority benefits or MSP Premium Assistance (i.e. financial support for permanent residents and citizens with a net annual income of less than $42,000) receive partial funding of many supplementary healthcare benefits, including physical therapy, massage therapy, chiropractic visits, acupuncture and other commonly cited pain treatments.

At least two-thirds of Canadians support provincial funding for a number of treatments, such as prescribed pain medications (75% support), surgical interventions (74%) and physiotherapy (66%).

Half of Canadians say their province should cover counselling services, something the government of British Columbia recently announced that they would begin subsidizing to address mental health concerns.

Cannabis is perhaps the most interesting medication option on this list, due to what this study finds among patients who use it. Just 31 per cent of Canadians would like to see their provincial government cover the costs of cannabis, but among those who have pain and use cannabis to treat it, it is reported as effective at the highest rate of any treatment (74% said this).

A number of other treatments, those with less developed scientific research, such as hypnosis or meditation, are supported by far fewer Canadians:

Opioids a source of anxiety; barriers to access remain

Although some proposals to expand health coverage of more pain treatments enjoy significant public support, Canadians are less sanguine about opioid pain medications. Strong majorities express significant concern about the potential for people to over-use (79%), become addicted to (80%) or even overdose (73%) from such medications, with these worries particularly pronounced among women.

Even among those currently experiencing ongoing pain, four-in-ten (42%) say they have either avoided using prescription pain medications or reduced their usage because of related health concerns.

Many of those who have curtailed their usage of prescription pain medications or avoided them altogether say that this decision has come with a major trade-off: more pain and less activity.

This is especially true of the Severely Affected group, where nearly two-in-three (64%) say they are in more pain as a result of limiting their opioid usage. Conversely, those in the Moderate Pain group are more likely to say they have “found other ways to deal with the pain.”

It would appear, therefore, that prescription pain medications carry the greatest additional value for those Severely Affected by pain, despite their potential side effects and risk of abuse.

While most Canadians with ongoing pain have been able to get the prescription medications they need, significant barriers to access remain for a sizable minority of this group. Among the Severely Affected, one-in-eight (13%) say they have been unable to obtain pain medications because a doctor would not prescribe them at all, with smaller proportions saying their doctor insisted on a lower dose or would not renew the prescription after initially doing so. For those in the Minimally Affected group, the more pressing challenge seems to be convincing doctors of their need for certain prescription pain medications.

This apparent reluctance on the part of many doctors to prescribe opioid pain medications comes in the midst of a nationwide public health strategy to significantly reduce the healthcare system’s reliance on these drugs for treating chronic pain, after more than 10,000 Canadians died of opioid-related overdoses in less than a three-year period. One of the unintended consequences of this response has been the increased stigmatization surrounding opioid use of any kind, potentially preventing those with a genuine need for such treatments from accessing them.

Notes on Methodology

Sample augment

In order to enhance our view of Canadians with experience of on-going pain, the Angus Reid Institute augmented this key portion of the survey sample up to the total of 1,662.

The general population sample size for the study was initially 2,137 and yielded a sub-sample of 721 respondents (34%) reporting they are dealing with ongoing pain to at least some degree (two-thirds of whom – 22 per cent of the total population – further qualified as living with chronic pain). To provide a more robust sub-sample for analytical purposes, the overall group was “boosted” with an oversampling of 941 additional respondents.

Those in this “booster” sample had been previously profiled on the Angus Reid Forum and re-qualified on the initial overall chronic pain screening question used in this special survey. The sample augment was statistically weighted to reflect the demographic makeup and overall pain profile of the original general population group dealing with some form of ongoing pain.

Pain Experience Index

With respect to the “pain profile”, the one-in-three respondents initially indicating some experience with on-going pain were sorted into three roughly equal-sized groups based on the severity of their pain and its impact on their lives.

More specifically:

The “Severely Affected” includes those further indicating they have had the pain for at least a year; that it is at least “severe” at its worst and “moderate” on average; and that their pain has a significant impact on them emotionally and/or functionally.

The “Moderately Affected” group experiences somewhat less severe pain and reports less interference with their lives, though are still affected to at “at least some degree” in one or more ways.

The “Minimally Affected” group are the remaining individuals who report a more minor pain level and less impact on their lives (and many have experienced the pain for less than a year).

For detailed breakdowns of the general population by age, gender, region, education, and other demographics, click here.

For detailed breakdowns of those with chronic pain by age, gender, region, education, and other demographics, click here.

For detailed results by the Pain Experience Index, click here.

Click here for the full questionnaire used in this survey

Click here for the full report, including data tables and methodology

MEDIA CONTACTS:

Shachi Kurl, Executive Director, Angus Reid Institute: 604.908.1693 shachi.kurl@angusreid.org @shachikurl

Maria Hudspith, Executive Director, Pain BC: 604.349.0150 maria@painbc.ca

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