An examination of referrals declined for chronic pain treatment: There is increasing mental health complexity within treatment seeking patients with chronic pain over time

ABSTRACT

Background

Chronic pain is a complex disease that requires interprofessional care for effective management. Despite the need for multidisciplinary care, disease and healthcare inequities can prevent individuals from attaining adequate treatment. Factors such as mental health, cost, and distance to a healthcare center can contribute to healthcare accessibility inequality. The aim of this study is to examine declined referrals at the Toronto Academic Pain Medicine Institute (TAPMI) to determine the reason for declining care and number of declined referrals.

Methods

A retrospective chart review of all declined referrals at TAPMI in 2018 and 2022 was conducted. Referral documentation and the intake decision was extracted from the electronic medical charts by the research team and verified by the clinical intake team. Chi-square tests were conducted to determine if the proportion of declined referrals changed between the years reviewed.

Results

The number of declined referrals due to mental health complexities increased significantly from 51 (11%) in 2018 to 180 (18%) in 2022 (χ² = 10.9, P = .0009). A significant rise in the number of declines due to mental health service requests was also observed (ꭓ² = 24.53, P < .00001). Other common reasons for declined referrals in 2018 and 2022 included duplicate service, no primary care provider, and healthcare service changes.

Conclusion

: Mental health complexities continue to be a significant barrier to healthcare service acquisition for individuals living with chronic pain. The increase in patient complexity from 2018 to 2022 highlights the need for integrated healthcare resources.

KEYWORDS:

• Chronic pain
• Mental Health
• Healthcare Referral

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Introduction

Chronic pain affects approximately 19% of the Canadian adult population and is one of the leading contributors to years lived with disability globally.^1,2 The Canadian government estimates that the prevalence of chronic pain will increase by 17.5% from 2019 to 2030, further necessitating the development of comprehensive healthcare options.³ The complexity of chronic pain requires an interprofessional treatment approach utilizing the biopsychosocial model to manage the patient specific factors that may play a role in pain perception and in response to pain-relieving treatments.⁴

Despite the high prevalence of pain and the necessity of interprofessional care approaches, access to comprehensive pain care is a challenge for many seeking care as these services are often sparse, have long wait times, and are often located in urban centers.⁵ Access to interprofessional care is further limited by stringent exclusion criteria within interprofessional clinics.⁶ For example, approximately one in four Canadian multidisciplinary pain treatment centers excluded patients if a co-occurring mental health disorder and/or a substance use disorder was present.⁶ The Canadian pain taskforce has recently acknowledged the disparity in healthcare due to mental health concerns and has highlighted equitable access to comprehensive care as pillar of focus.³

Among the various biological, psychological, and social factors that can interfere with pain management, mental health related issues are among the most prominent and well established. Mental health related complexities include mood, anxiety, stress, personality, substance use, and psychotic disorders.⁷ Mental health disorders have been found to be more prevalent in the chronic pain population when compared to the general population, although the specific prevalence varies depending on the diagnosis.⁸ For example, a recent meta-analysis of the prevalence of co-occurring chronic pain and posttraumatic stress disorder (PTSD) revealed that among persons with pain the rate is 11.7%, however, in general populations it is 5.1%.⁹ The higher pain intensity, increased disability, and reduced quality of life that is often associated with the co-occurrence of a mental health issue and chronic pain further complicates pain management recommendations.^10–12 Despite this, individuals living with complex mental health issues lack access to care due to common exclusion criteria around mental comorbidities for accessing pain clinics. However, the impact of co-occurring mental health on access to care for the chronic pain population remains unknown.

The pandemic exacerbated the systemic inequalities perceived by people living with chronic pain in Canada.¹³ It also led to a rise in the demand for mental health services. Given the common co-morbidities of pain and mental health needs, the lack of integrated pain and mental health services in many interprofessional pain clinics, and the rise in the demand for pain services, it is essential to understand the reasons people are being declined chronic pain services, who is impacted, and whether this has shifted pre vs. post pandemic.

To address this, we conducted a retrospective review of all declined referrals at the Toronto Academic Pain Medicine Institute; a partnership of five Toronto academic pain Institutions that receive approximately 7000 referrals/ year. We describe and contrast the reason and number of declined referrals in a pre-pandemic (2018) and post pandemic (2022) year.

Methods

This retrospective chart review was conducted at the Toronto Academic Pain Medicine Institute at Women’s College Hospital (WCH) and received approval from the Assessment Process for Quality Improvement Projects ethics board (APQIP # 2023-0007-P). TAPMI is a comprehensive, interdisciplinary pain program supported by a collaborative partnership across five institutions in Toronto, offering a single-site entry system for referrals and a centralized referral assignment process. The TAPMI clinic receives between 3500 to7000 referrals per year. Two trained members of the research team (social work student SJ and research coordinator EB) reviewed the referral documentation for all declined referrals in 2018 and 2022 to determine the reason for the referral decline. These years were chosen because TAPMI was well established by 2018 and 2022 represents a return to normalcy from COVID. If the reason for declining the referral was not clear from the documentation in the patient’s electronic medical chart, the research team would review the referral package with a Registered Practical Nurse (RPN) on the intake team. Some referrals contained multiple reasons for the decline, in which case all reasons were reported.

We took a modified content analysis approach to categorizing the themes of the declined referrals.¹⁴ Free text was used to document referral information, which was used to create codes for categorization of the reasons referrals were declined. The research team (RB, AN, EB, BR), in collaboration with the intake team (TD, CS, CA, KC), continually refined the code list to best categorize the data. Once the preliminary data was pulled from the charts and coded, the codes were grouped into categories for further analysis which led to broader categories (i.e., themes). Rigorous discussions with the research and intake nursing team based on inductive reasoning and prior literature lead to the development of the categories shown below. For example, “unresolved mental health service needs” includes referrals that were declined for reasons of untreated and unstable mental health (e.g., untreated and active schizophrenia, not seeking treatment for substance use disorder), those who decline services for mental health care (e.g., refused treatment), and those not actively receiving mental health care despite the need for this care (e.g., suspected schizophrenia but declined participating in an assessment). Note that referrals were not declined due to the presence of any mental health diagnosis (e.g., generalized anxiety disorder or substance use disorder), but exclusion criteria were determined by clinical decision making per case on the basis of unstable and untreated mental health.

Statistical Methods

To determine if the proportion of declined referrals differed between 2018 and 2022, chi-square tests were conducted using SPSS ver. 29. For all tests a P value of < .05 was considered significant.

Results

A total of 3520 referrals were received at TAPMI in 2018, with 446 (12.67%) being declined. In 2022, 6796 referrals were assessed by the intake team and 979 (14.41%) were declined. The top reasons for declined referrals in 2018 and 2022 are depicted in Figure 1. In 2018, 278 (62.33%) of the declined referrals were female and 168 (37.67%) were male, with an average age of 53.71 (SD = 14.84) years. In 2022, 685 (69.97%) of the declined referrals were female and 294 (30.03%) were male with average age of 52.08 (SD = 17.05) years.

Figure 1. The most prominent reason for declined referrals in 2018 and 2022. a) depicts the top reasons for declined referrals in 2018 and b) depicts the top reasons for declined referrals in 2022. The other category includes various declined referrals such as incomplete referrals, inappropriate referrals (not related to a chronic pain condition), or requests for pain services not provided.

Figure 2. The number of referals that were declined in 2018 and 2022 due to duplicate care. a) is due to duplicate referrals and b) is due to the patient being seen at another pain clinic within the past year.

Mental health

In 2018, a total of 51 referrals (11.43% of declined referrals) were declined due to co-occurring complexity in mental health concerns (e.g., untreated substance use disorder and instability due to borderline personality disorder) that precluded pain care in 2018. In 2022 the number of referrals that were declined due to a complexity in mental health that precluded pain care significantly increased to 180 (18.39%) referrals (ꭓ² = 10.9, P = .000962). Upon further investigation the proportion of those with complex mental health diagnoses did not change over time (ꭓ² = 0.063, P = .80) but the proportion of those seeking services for mental health services did significantly increase (ꭓ² = 24.53, P < 0.00001).

Duplication of pain services

Referrals requesting duplicate services, which include multiple referrals for the same patient and patients that received the same care offered at another pain clinic in the previous year can be found in Figure 1. Duplicate referrals increased significantly from 24 (5.38%) to 235 (24.00%) between 2018 and 2022 (ꭓ² = 71.45, P < .0001). The number of referrals that were declined due to receiving care at a separate pain clinic within the previous year increased significantly from 28 (6.28%) referrals in 2018 to 135 (13.79%) referrals in 2022 (ꭓ² = 17.07, P < .0001).

No primary care provider

In 2018 only 2 (0.45%) referrals were declined because they did not have a primary care provider. This number significantly increased to 35 (3.58%) declined referrals in 2022 (ꭓ² = 11.84, P = .00058).

Change in clinic service criteria

Declined referrals due to changes to the services offered at the clinic, which include referrals for services that have been paused (e.g., ketamine infusions), active insurance claims (WSIB, MVA), or if the patient is outside of the TAPMI catchment area. Between 2018 and 2022 there was a decrease in the number of patients that were declined due to being outside of the catchment area from 216 (48.43%) to 136 (13.89%). The number of patients that were declined due to service pause of clinical programs that were once accepting referrals increased from 4 (0.90%) in 2018 to 165 (16.85%) in 2022. In 2018 zero referrals were declined due to an active insurance claim while 74 (7.56%) referrals declined in 2022.

Discussion

Here we set out to explore the barriers to chronic pain care, determine the number of patients declined due to exclusion criteria used by TAPMI partner sites, and explore the changes in declined referrals between 2018 and 2022. We found that common reasons for declining patient referrals were due to the complexity in mental health, lack of a primary care provider, duplicate care requests, and service-related changes.

Our results indicate that the co-occurrence of complex mental health issues, in addition to a lack of services required to manage mental health complications, is a significant barrier to care for individuals living with chronic pain. Consistent with the marked rise in mental health distress observed during the Covid-19 pandemic,^13,15 we found a significant increase from 11% in 2018 (pre-pandemic) to almost 20% in 2022 (post-pandemic) in the number of individuals seeking pain care alongside complexities in mental health. Despite the Canadian Pain Task force acknowledging the most impactful method to treat chronic pain is through the application of the biopsychosocial model and a multidisciplinary approach, current models of care lack the resources or funding to effectively integrate mental health care.³ With approximately one in four Canadian multidisciplinary pain treatment centers excluding patients with a co-occurring mental health and/or substance use disorder, access to care is challenging.⁶ The disproportionate rise in referrals requesting one-on-one therapy or consultation with a psychiatrist indicates the necessity of integrated mental health and pain management. However, even with a psychologist or psychiatrist present, multidisciplinary pain centers remained apprehensive to include patients with complex mental health needs.⁶ Psychologists that specialize in pain management are rare, with a majority of psychologists expressing low perceived competency and confidence to manage pain¹⁶. Despite the high interest in pain education, pathways to equip psychologists with pain management skills are not yet widespread.¹⁶ Furthermore, to address overwhelming patient volumes and long wait times, many interprofessional chronic pain clinics offer group-based programing which may limit the enrollment for individuals with co-occurring mental health. Literature suggests that enrolling individuals into group management sessions without managing psychiatric conditions could disrupt care for other members and interfere with treatment outcomes.^17,18 To tackle the complexity of the patient population, further specialized resources that combine both pain and mental health care are required. Additionally, patients with co-occurring pain and mental health concerns may require longitudinal care. This is at odds with healthcare models, such as in Ontario, in which funding for pain care is based on the number of new referrals and patients are expected to be discharged within a year (i.e., acute care model).

Duplicate services, which includes duplicate referrals and referrals for services already provided, were a common reason for declined referrals. We observed a substantial increase in the number of duplicate referrals, which rose by approximately 5-times from 24 (5.38%) declined referrals in 2018 to 235 (24.00%) declined referrals in 2022. This could be indicative of patients facing diagnostic uncertainty and seeking care from multiple providers who then provide the same referral to the pain clinic. Duplicate referrals could also reflect long wait times in which patients are re-referred when they have not received an appointment in a timely manner. Wait times for chronic pain care in Ontario have been estimated to be 176 days, with some conditions exceeding one year for treatment. With wait-times of 6-months being deemed medically unacceptable and linked with poor patient outcomes, patients or healthcare providers may attempt a re-referral.¹⁹ Regardless, multiple referrals for the same patient are administratively resource intensive and contribute to inefficiencies in the triage process.

Table 1. The number of referrals declined in 2018 and 2022 due to mental health complexities. The percentage of patients declined for the specific reason out of the total number of declined referrals for the year is shown in brackets.

Reason for declined referral	2017/2018	2022/2023
Total Mental health complexities	51 (11.43%)	180 (18.39%)
Mental health service	10 (2.24%)	94 (9.60%)
Requesting 1:1 counselling/therapy	6 (1.35%)	0 (0%)
Requesting 1:1 psychiatric care	3 (0.67%)	72 (7.35%)
Unresolved mental health service needs	1 (0.22%)	22 (2.45%)
Mental health concerns	41 (9.19%)	86 (9.90%)
Mental health not specified	0 (0%)	10 (1.02%)
Substance use: not seeking treatment	10 (2.24%)	20 (2.04%)
Schizophrenia	0 (0%)	2 (0.20%)
Personality disorders	19 (4.26%)	17 (1.74%)
Complex trauma presentations	12 (2.69%)	37 (3.78%)

We also report a significant increase in the number of patients who were declined because they already received comparable services from other health service providers from 6.28% in 2018 to 13.79% in 2022. Referral decisions at TAPMI are made after careful consideration of the referral documentation, patient history, and the services requested on the referral. In response, referring healthcare providers are offered e-consultation services to further support the patients care management plan. Despite utilizing appropriate care (e.g., physiotherapy, pain-related psychotherapy, pain medication management) in the past, these patients continue to be referred to a specialist pain service.

It is possible that the rise in both duplicate referrals and patients seeking duplicate care may indicate that patients are dissatisfied with the service they have received or that the care received does not align with patient expectations. For example, 50% of individuals living with pain reported being satisfied with the care they received.²⁰ Literature also reveals that patients often set high expectations for the treatment to reduce pain (e.g., “find a cause for my pain and fix it”), which does not align with the treatment outcomes set by healthcare professionals, which focus on improving pain function and reducing disability.^21,22 Patient expectations have also been shown to predict treatment outcomes, and a misalignment may predispose the patient to be dissatisfied with care.²³ Discharge planning may also play a role in seeking duplicate care as prior literature has shown effective discharge planning can reduce hospital re-admission of chronic conditions and improve patient satisfaction, but the effect of discharge within chronic pain remains unknown.^24,25 Towards this effort, patient-provider communication, whether from the initial referral process to set timeline expectations, the initial appointment to set expectations about care, or a separate clinic upon discharge, are all helpful for adequately managing patients with chronic pain. Future studies could work towards understanding the underlying factors that may be motivating patients to seek additional chronic pain care. Such information could help alleviate the excessive use of healthcare resources required to manage duplicate service requests.

The lack of resources to provide consistent long-term chronic pain management from specialist tertiary care clinics necessitates primary care providers (PCP) help manage a treatment plan and prescriptions in collaboration with the patient after tertiary care. However, according to recent estimates from the Canadian government more than one in five Canadians do not have a designated family practitioner, ranking Canada as 29^th out of 36 high-income nations.²⁶ Ontario specifically has the largest population per primary care provider in all of Canada, further straining healthcare providers and limiting access.²⁶ The decline in access to primary care was further exacerbated during the pandemic, in which there was a marked increase the percentage of family physicians who stopped practicing.²⁷ This is exemplified by the approximately 3.5% of declined referrals for individuals who do not have a PCP. Furthermore, the increase in patients that do not have a primary care provider is underrepresented in our sample, as mid-2022, we relaxed the requirement to have a PCP to facilitate access to chronic pain care. Not only does the decline of primary care providers impact patients with chronic pain by disrupting access to a tertiary pain clinic and interfere with long-term management plans, but evidence suggests that primary care providers help to lower total healthcare costs, improve population health, and reduce emergency visits for chronic conditions.^28,29

Service-related changes at TAPMI, such as treatment service pauses, and catchment area changes also provide insight into the changes in widespread management of chronic pain across the province. TAPMI provides highly specialized and novel pain management programs such as management for young adults, neuromodulation, and pelvic pain physiotherapy that may not be available elsewhere. Not only are the specialized services highly sought after, but due to the lack of programs providing similar service elsewhere the catchment area is expanded to accommodate individuals in need. The expanded catchment area to include patients from Hamilton or Thunder Bay in combination with the abundance of referrals results in an extended waitlist for treatment. Highly specialized services can create an imbalance in the supply of resources and the demand from patients and results in a waitlist of over one year for pelvic pain care. Further research is required to assess the inequality of care and guide stakeholders to develop new programs that fill the healthcare gap. Despite the rising prevalence of chronic pain, the development of resources to accommodate the patient population are lagging behind.

The most notable limitation of the study is due to the nature of the retrospective design lacking data on confounding variables. Additionally, a lack of standardized reporting for the declined referrals limited our understanding of the specific reasons for the declined referral. While this may not have impacted the overall understanding of the barriers to healthcare, novel and nuanced information may have been lost. Additionally, TAPMI is a continually evolving healthcare center that tailors care to the needs of the public based on current literature and research. As a result, services offered and referral exclusion criteria change to meet patient and system needs and may have resulted in the underestimation of results.

Conclusion

This study provides key insight into the service operations for chronic pain, and highlight barriers and inequities related to care are. Mental health has been found to act as a barrier to comprehensive chronic pain care in 2018 and has only continued to grow as of 2022. Whether the underlying cause of the increase is due to the increased complexity of the patient population or due to the effect of the COVID-19 pandemic on mental health remains unknown. Other factors that have increased include the lack of a primary care provider TAPMI, duplicate referrals, and being seen at another pain clinic. Widespread systematic healthcare changes to increase the ability for patients in need to receive care is desperately required to tackle the rising rate of chronic pain and lack of service providers. As patients with chronic pain become more complex and require more advanced care to treat, the further development and implementation of resources to manage this complexity is required.

Declaration of Interest

Rachael Bosma has declared no conflict of interest. Emeralda Burke has declared no conflict of interest. Cara Stanley has declared no conflict of interest. Christian Aquino has declared no conflict of interest. Kimberly Coombs has declared no conflict of interest. Brittany N. Rosenbloom has declared no conflict of interest. Adriano Nella has declared no conflict of interest. Shamalla James has declared no conflict of interest. Hance Clarke is funded via a Merit Award from the Department of Anesthesiology and Pain Medicine at the University of Toronto and is the president-elect of the Canadian Pain Society. David Flammer has declared no conflict of interest. Anuj Bhatia has declared no conflict of interest. John Flannery has declared no conflict of interest. Andrew Smith has declared no conflict of interest. Tania Di Renna has declared no conflict of interest.