Problems accessing pain care, and the adverse outcomes among adults with chronic pain: a cross-sectional survey study

ABSTRACT

Aims

Prescribing restrictions have significantly impacted patients with chronic pain, leading to opioid medication tapering and reduced access. This study examines the consequences of these restrictions and their impact on patient health and pain management strategies.

Patients & Methods/Materials & Methods

This research explores barriers to pain care, especially opioid therapy, adverse health outcomes resulting from reduced access to pain medications, and alternative pain management strategies. The study analyzes data from a cross-sectional survey conducted by the American Chronic Pain Association (ACPA) between November 2014 and January 2015. The survey gathered quantitative data on demographics, healthcare access, pain management strategies, and challenges in obtaining prescribed medications, alongside qualitative responses. Descriptive statistics summarized quantitative findings; chi-square and t-tests compared those with and without medication access difficulties. Thematic analysis revealed recurring themes in qualitative responses.

Results

The study reveals that over half of the respondents faced difficulties obtaining prescribed pain medications, leading to significant adverse health consequences, including unmanaged pain, psychological distress, and suicidal ideation.

Conclusion

These findings highlight the urgent need to address systemic and personal barriers to pain medication access, and the need for patient-centered care that incorporates evidence-based, holistic pain management strategies and shared decision-making between clinicians and patients.

Plain Language Summary

Chronic pain affects millions of people and can seriously impact their physical and emotional well-being. For many, opioid medications are the last resort to help manage severe pain. However, restrictions on opioid prescribing, introduced in response to the opioid crisis, have made it harder for some people with chronic pain to get the medications they need. This study examines the effects of these restrictions on people’s access to pain medications and their health outcomes.

The research is based on a survey conducted by the American Chronic Pain Association (ACPA) in 2014–2015. The survey collected information from 1,001 individuals with chronic pain, including their experiences with getting prescribed pain medications. The study found that more than half of the participants had trouble accessing their pain medications, leading to negative health consequences, such as unmanaged pain, psychological distress, and suicidal thoughts.The findings highlight the urgent need for better access to pain care, including opioid therapy when necessary. It is crucial for healthcare providers to work closely with patients to make decisions about pain management that prioritize the patient’s well-being. A more patient-centered approach to pain care can help improve quality of life and overall health for people suffering from chronic pain.

1. Introduction

Chronic pain is a public health concern that has adverse effects on individuals’ physical and psychological well-being [1,2]. Defined as persistent or recurring pain lasting for at least three months, it can be accompanied by significant emotional distress and functional impairment that hinder an individual’s ability to engage in daily activities and fulfill social roles [3]. In the absence of effective treatment, chronic pain can result in enduring consequences, including anxiety, depression, suicidal ideation, substance use and use disorders (SUDs), and impaired personal and societal functioning [2,4–6].

Chronic pain frequently resists conventional therapeutic approaches, including physical therapy, psychological treatments, non-opioid pharmacotherapy, interventional or surgical interventions, and complementary and integrative health modalities, such as acupuncture or chiropractic care [7–9]. Consequently, individuals suffering from refractory chronic pain may need opioid medications as the “last resort” treatment to ameliorate pain, enhance functionality, and improve quality of life (QoL) [10]. However, even when administered as prescribed, opioids, particularly at higher doses, have been linked to adverse effects, such as cognitive dysfunction, psychiatric disorders, opioid use disorder (OUD), disruption of endocrine function, and overdose [11,12].

Yet, the lack of uniformly effective treatments for chronic non-cancer pain, combined with insufficient Food and Drug Administration (FDA) supervision and regulations in the pharmaceutical sector, enabled pharmaceutical companies to aggressively market opioids to patients and clinicians, and even engage in deceitful practices advertising opioids as safe and effective for chronic pain, despite the lack of research evidence to support such claims [13,14]. This marketing, along with boosting opioid production at an alarming rate, led to a widespread increase in opioid prescribing, contributing to the opioid crisis [15].

To address this crisis, increased scrutiny and changes in the rules and guidelines regarding opioid therapy for chronic non-cancer pain in the United States followed [16], with calls for a reduction in opioid prescribing and more stringent monitoring practices when opioid therapy was used. Patients with severe chronic pain, especially those requiring opioid therapy, had started experiencing the consequences of these changes in the early 2010s, increasingly reporting difficulties with accessing opioid medications, even when they were used appropriately and responsibly for a longer period, and effectively helped their pain [17]. The reductions in prescribing opioids for chronic non-cancer pain had accelerated after the release in 2016 of a comprehensive “Guideline for Prescribing Opioids for Chronic Pain” by the Center for Disease Control Prevention (CDC) that aimed at curbing inappropriate opioid prescribing [17]. Unfortunately, the misapplication of this guideline, with resulting opioid tapers, led to harm among some patients, with the resulting Food and Drug Administration (FDA’s) warning against the general practices of forced, fast tapering or discontinuation of opioids [18]. The CDC revised its guidelines in 2022 [19]. The new recommendations embrace a patient-centered approach, emphasizing the importance of shared decision-making between clinicians and patients, and consideration of both the risks and benefits of continued opioid therapy versus its tapering or discontinuation.

Although the efforts to reduce opioid prescribing for chronic non-cancer pain have been underway for approximately two decades now, our understanding of the impact on patients affected by the tightened rules and regulations remains limited, despite evidence that, in general, this can substantially influence patients’ physical and mental well-being, quality of life (QoL), and overall health. Research has primarily focused on the efficacy and risks linked to opioid therapy and the obstacles that physicians face when caring for patients with chronic pain [20,21]. Some studies have examined barriers to accessing pain medication, e.g., due to insurance restrictions or regulatory hurdles [22,23], but few have focused on how this affects patients. Limited evidence indicates that inappropriate tapering or discontinuation of opioid therapy can cause withdrawal symptoms, uncontrolled pain, and psychological distress, with some patients resorting to illicit substance use for self-medication and contemplating or even attempting suicide [24]. This evidence offers some insights into the interplay between opioid therapy and related regulations, but research on how these factors intersect and impact individuals is sparse. Our study aims to address this gap by providing a unique examination of the real-world experiences of patients, using data collected from the American Chronic Pain Association (ACPA) survey, and contributing new insights on the barriers to medication access and the resulting physical, emotional, and psychological toll on patients. More information in this regard is needed, as it is critical to understand the human toll of regulations and practices to prevent (typically unintended) harm to individuals.

The American Chronic Pain Association (ACPA), a not-for-profit organization whose members include patients with chronic pain, focuses on bringing the voices and perspectives of people with chronic pain and advocating for improving access to evidence-based pain care. In the early 2010’s, the ACPA started receiving feedback from its members about challenges with accessing pain medications and associated severe impacts, and requests for help with improving access to pain medications. In response, the ACPA developed and conducted a survey between 2014 and 2015 to better understand their members’ experiences related to pain medications. The results of this survey, completed by 1,001 individuals with chronic pain, helped inform the ACPA’s advocacy efforts but have not been shared with a broader audience. Since research on patient-level perspectives and experiences in this area has overall been sparse, findings from this survey have remained relevant even now, close to a decade after these data had been collected.

In contrast to previous studies that focus on the broad statistics of opioid access or treatment efficacy, this study utilizes the ACPA data to illuminate the nuanced and personal experiences of individuals, shedding light on the direct consequences of opioid access issues and offering valuable insights for improving policy and patient care. Therefore, this study leveraged the existing, ACPA-collected quantitative and qualitative survey data to characterize the experiences of individuals treated with pain medications for chronic pain, identify the impact of perceived barriers to accessing pain medications, and strategies and coping mechanisms adopted when facing challenges with medication access. While this study focuses on the systemic barriers faced by individuals with chronic pain in the United States, the findings may offer insights into similar healthcare settings worldwide. By examining these U.S.-specific regulatory changes and prescribing practices, this research aims to contribute to global discussions on improving access to pain care and reducing unintended harms from policy shifts. Our deeper understanding of these interwoven issues could help facilitate the optimization of pain care and opioid therapy, with improved health outcomes and quality of life (QoL) among adults with chronic non-cancer pain.

2. Methods

2.1. Study design

This cross-sectional survey study anonymously collected both quantitative and qualitative data to enable a more in-depth understanding of individual experiences related to challenges with accessing medications needed for chronic pain treatment. This study did not meet the definition of human subject research as defined in 45 CFR 46.102(e) and/or (I); therefore, a review and approval by Institutional Review Board (IRB) was not required.

2.2. Study procedures

The survey was developed by the American Chronic Pain Association (ACPA) with input from diverse stakeholders, including healthcare professionals and those with lived experience of pain, in response to the ACPA members’ concerns about worsening access to pain medications. The survey was not formally validated. From November 2014 to January 2015, the ACPA disseminated a link to the Qualtrics-based survey by emailing it to its members (three times in total) and making it available on its website, calling for feedback from the members who suffered from chronic pain and encountered difficulty accessing their prescribed pain medications. The survey was completed anonymously; its respondents were not compensated.

The American Chronic Pain Association (ACPA) shared the anonymous dataset with our research team by providing a link to the online database with raw data derived from each respondent’s response. We then inputted each respondent’s raw data into Microsoft Excel. The research team members were not involved in the survey development or data collection.

2.3. Study survey

The survey comprised 29 questions (see Supplemental File 1) on several domains, including demographics (age, gender, race, urbanicity status, geographic area location, and insurance type); healthcare access; approaches to pain management; availability of pain medicine; concerns of opioid medications being stolen; challenges with obtaining pain medications from pharmacies and healthcare professionals; and the impact of subpar access to pain medications.

The survey questions included single- versus multiple-choice response options to collect quantitative data, with some of these questions enabling additional qualitative responses to expand upon quantitative information. Qualitative responses to eight open-ended questions were used for qualitative analysis: three questions inquired about the adverse outcomes associated with perceived barriers to accessing pain medications; two questions inquired about alternative strategies and coping mechanisms to manage pain where access to pain medication was inadequate; and three questions inquired about the barriers to accessing pain medications.

To be included in the study, respondents needed to answer “Yes” to the question: “Are you a person with pain?” and must have provided an answer (Yes/No) to the question on whether they had trouble obtaining a prescription for their pain medication: “Have you had any issues obtaining a prescription for your pain medications?.” Responses to this latter question resulted in forming two subgroups: those who responded “Yes” and those who responded “No” to experiencing issues with obtaining prescriptions for pain medications. The data were presented in groups for specific questions due to the nature of the questions; therefore, not all percentages will add up to 100% due to missing or declined responses. Additionally, survey questions with a multiple-choice response option had a “Yes” next to the response option from the question and a number/percentage of people who endorsed a given specific category out of the entire group.

2.4. Data analysis

2.4.1. Quantitative data

Descriptive statistics were used to summarize sample demographics and outcomes of interest in Table 2. . Chi-square (for categorical variables) or independent-sample t-test (for continuous variables) analyses assessed for differences between the groups (those who experienced vs did not experience challenges with access to pain medications), with a statistical significance level set at two-tailed p < 0. 05. All analyses were performed utilizing SAS (Version 9.4) statistical software.

Table 2.

Sample demographics by group status. Due to missing data, the percentages may not add up to 100%.

	Overall (N = 973)	Experienced Issues Obtaining Prescription for Pain Medications (n = 540)	Did Not Experience Issues Obtaining Prescription for Pain Medications (n = 433)	P-value
Demographics
What is your gender? N (%) Female Male	736 (76.4) 228 (23.7)	406 (76.2) 127 (23.8)	330 (76.6) 101 (23.4)	0.886
What is your age? N (%) 18–25 26–40 41–55 56–65 Over 65	34 (3.5) 157 (16.2) 432 (44.7) 252 (26.1) 92 (9.5)	18 (3.4) 77 (14.4) 240 (44.8) 150 (28.0) 51 (9.5)	16 (3.7) 80 (18.6) 192 (44.6) 102 (23.7) 41 (9.5)	0.356
Which of the following best describes your race? N (%) Caucasian/Non-Hispanic White African American/non-Hispanic black Mexican American/Hispanic American Indian/Alaska Native Asian American/Pacific Islander Other	889 (92.4) 24 (2.5) 22 (2.3) 16 (1.7) 7 (0.7) 4 (0.4)	494 (92.9) 12 (2.3) 9 (1.7) 9 (1.7) 6 (1.1) 2 (0.4)	395 (91.9) 12 (2.8) 9 (3.0) 7 (1.6) 1 (0.2) 2 (0.5)	0.439
Which of the following best describes the area you live? N (%) Suburban Rural Urban	516 (53.1) 287 (29.6) 168 (17.3)	298 (55.3) 145 (26.9) 96 (17.8)	218 (50.5) 142 (32.9) 72 (16.7)	0.134 0.043 0.640
In what region do you live? N (%) South West Northeast Midwest Puerto Rico/Outside US	305 (31.4) 243 (25.0) 203 (20.9) 196 (20.2) 25 (2.6)	174 (32.2) 134 (24.8) 111 (20.6) 106 (19.6) 15 (2.8)	131 (30.3) 109 (25.2) 92 (21.3) 90 (20.8) 10 (2.3)	0.948
What type of health insurance do you have? N (%) Private, Yes Medicare, Yes Medicaid, Yes No insurance, Yes	470 (48.3) 267 (27.4) 89 (9.2) 59 (6.1)	272 (57.9) 143 (26.5) 51 (9.4) 29 (5.4)	198 (42.13) 124 (28.6) 38 (8.8) 30 (6.9)	0.454

Chi-square or independent sample t tests were used to compare the groups and generate p-values indicating statistical significance (p < 0.05).

2.4.2. Qualitative data

An inductive thematic qualitative analysis was used to discover recurring themes and patterns within the qualitative responses to questions listed in Table 1, using the MAXQDA software version 24.5. The thematic analysis code was developed by two coders (M.C., J.Y.); the initial coding was iteratively revised as needed when new information emerged. All disagreements were resolved using the consensus approach. After the coding approach was finalized, an analysis was conducted on the coded data to discover initial patterns, by clustering codes into potential categories, and their themes and subthemes, before formulating a narrative that encompassed the results stemming from qualitative data.

Table 1.

Questions utilized within thematic analysis.

Aim	Survey Questions with Open-Ended Response Options
What are the adverse outcomes associated with perceived barriers to accessing pain medications?	1. Have you ever gone to the emergency room because you did not have your medication for your pain? 2. Have you ever contemplated suicide because you cannot find relief? 3. What do you do if you cannot get access to your medication?
What are alternative strategies and coping mechanisms individuals employ to manage pain in situations where access to pain medication is inadequate?	1. How are you treating your pain? 2. What do you do if you cannot get access to your medication?
What are barriers to accessing pain medications?	1. Have you had any issues obtaining a prescription for your pain medication? 2. If you have had any problems obtaining a prescription for pain medications from your physician, why? 3. If you have had problems obtaining your prescription pain medications from a retail pharmacy, why?

3. Results

3.1. Study sample

A total of 1,001 individuals completed the survey. The study sample for the present analysis included 973 individuals who responded “Yes” to having chronic pain and either “Yes” or “No” to the question about issues obtaining a prescription for pain medications. Among the study sample, 540/973 (55.5%) answered “Yes” and 433/973 (44.5%) answered “No” to experiencing such difficulties.

3.2. Sample demographics

The majority of the study sample (n = 973) identified as Caucasian/Non-Hispanic White (92.4%) and female (76.4%), with 44.7% of respondents falling within the 41–55 years old age range. Geographically, 31.4% of the respondents lived in southern and 25.0% lived in western regions in the U.S., with the majority residing within suburban communities (53.1%), followed by rural (29.6%) and urban (17.3%) areas. Private insurance (48.3%) and Medicare (27.4%) were the most prominent health plans among respondents.

Demographic characteristics did not statistically differ between the groups except one: rural residents were less likely to report problems with obtaining their prescriptions, with 26.9% reporting such issues, and 32.9% not experiencing such issues (p = 0.043).

3.3. Pain medication-related harms

Approximately one-third of respondents were concerned about the potential for their opioid medication to be stolen or misused by others and reported needing to visit an emergency department because of a lack of pain medication. Almost half (40.6%) reported experiencing medication shortages (40.6%), with the primary reason, cited by 92.0%, being inadequate pain control, which led to needing to use more of the medication than prescribed. At the same time, almost half (47.5%) stated they contemplated suicide due to the lack of relief from pain.

The subgroup who experienced issues obtaining opioid pain medication prescriptions was more likely to be concerned about their opioid medications being stolen/misused by others (8.7% versus 4%, p < 0.001). However, those who did not experience issues obtaining their prescriptions were more likely to ever contemplate suicide because they could not find pain relief (51.3% versus 44.4%, p = 0.034).

3.4. Alleviating pain

Nearly all respondents reported managing their pain with prescription medications (90.1%), with the majority taking three or more prescription medications (56.6%). Almost all (88.0%) were reporting taking some over-the-counter (OTC) medications. In addition, 15.7% of the sample used complementary and integrated health (CIH) therapies, and 7.8% reported marijuana use to help manage pain. Approximately one-third (33.3%) stated they ‘never’ take their pain medications ‘as needed’ rather than ‘as prescribed.’

There were no differences in methods used to alleviate pain between those who experienced issues obtaining prescription for pain medication and those who did not experience such issues.

3.5. Healthcare provider access

Most respondents (82.3%) reported currently having a healthcare provider, with pain care specialists (51.3%) being most common, followed by primary care/general practitioners (29.1%). Approximately one-half of the respondents traveled over 20 minutes to see their provider, with 28.8% needing to travel at least 40 minutes. Only 56.4% reported spending at least 20 minutes with their provider during a visit, with the remaining respondents recalling only shorter visits, including 19.7% who reported visits of lesser than 10-minute length. Over one-half of the respondents had to ask at least two providers before being able to obtain their prescription for pain medications, with 29.4% needing to ask at least four providers.

Individuals who did not experience issues obtaining prescription for opioid pain medication were more likely to have a healthcare provider (85.5% vs 80.5%, p = 0.041) and travel at least 20 minutes to see their provider (33.6% vs 24.9%, p = 0.010).

3.6. Pharmacies

Most respondents (56.7%) filled their prescriptions in retail pharmacies, with a large proportion traveling distances of up to 10 minutes (62.2%) and needing to visit only one pharmacy in order to fill their most recent prescription (73.9%), mostly (96.6%) within their state of residence.

Respondents who did experience issues obtaining prescription for opioid pain medication were more likely to fill their prescriptions for pain medication from large retail pharmacies (59.8% vs 52.9%, p = 0.030); while those who did not experience such issues were more likely to travel out of state (4.8% vs 2.3%, p = 0.036) to fill their prescriptions.

3.7. Qualitative responses

Qualitative responses to eight open-ended survey questions were a priori categorized into three distinct thematic analysis categories: adverse health outcomes (three questions), alternative coping mechanisms (two questions), and barriers accessing pain medication (three questions). The thematic analysis of each question within these categories was conducted separately to identify themes and subthemes; findings are summarized below, with examples of representative responses presented in Supplemental Table 1.

3.8. Category 1: adverse health outcomes

3.8.1. Theme: suffering

The perception of enduring physical discomfort and suffering in silence when faced with hindered access to pain medications was a prevalent theme. One respondent articulated this sentiment by stating, “- … I cannot work, parent my kids, walk, eat, or sleep.” [26–40 years old, Caucasian, Female]. Numerous individuals expressed distress about their incapacity to partake in activities of daily living, for example by saying, “Suffer in pain and cannot work or function normally.” [56–65 years old, Caucasian, Male].

3.8.2. Theme: psychological and physical toll

When unable to obtain pain medications, numerous individuals experienced emotional distress, marked by feelings of hopelessness and sorrow. As one respondent remarked, “I cry, weep, nash teeth, […] hoping that I can find relief.” [56–65 years old, Caucasian, Female]

Respondents also underscored the psychological burden associated with the persistent concern and worries about potential medication tapering or discontinuation, with subsequent withdrawal symptoms and worsened pain. A subset of individuals presented a thorough description of prior withdrawal experience after abrupt cessation of their pain medications; for example: “I am in severe pain and go through withdrawal sickness.” [56–65 years old, Caucasian, Female]

3.8.3. Theme: self-harm

Many respondents described a very concerning facet of their experiences, i.e., thoughts that suicide might be a strategy for dealing with the profound misery arising from their inability to obtain pain medications. For example, this respondent’s described what they do when they do not have their pain medication, “I suffer and cry … sometimes I just wish I would go on and die, the pain is making my life unbearable!” [41–55 years old, Caucasian, Female] Likewise, many spoke about suicidal ideation as they could not find any other form of relief, “I have no choice but to commit suicide when I am no longer able to travel out of state every three months to get a prescription.” [41–55 years old, Caucasian, Female]

Some individuals resorted to engaging in acts of self-harm and self-destructive behaviors as their last resort coping with their anguish when unable to get their prescribed medications. One participant said, “Usually, I become too jumpy and try to cause other pain, to where the hospital ER will seclude me for a while until they obtain medication records … ” [41–55 years old, Caucasian, Female]

3.9. Category 2: alternative coping mechanisms

Respondents described diverse alternative coping mechanisms and approaches to manage pain in response to medication unavailability that fell into three main themes: seeking assistance from healthcare professionals, adopting proactive measures, and resorting to potentially dangerous alternatives.

3.9.1. Theme: seek medical help

Many individuals indicated their dependence on getting help from healthcare professionals when faced with such circumstances. One respondent stated: “I call my GP and when he has closed, I call another doctor, … ” [26–40 years old, Caucasian, Female]. Several respondents chose to call their providers in the absence of pain medication, for example: “I call my pain clinic to talk to the on-call doctor and then they can call the ER first and let them know we are coming in … ” [26–40 years old, Caucasian, Female]

Likewise, many respondents also reported seeking urgent care: “I go to urgent care […] to see when I can get it.” [18–25 years old, Caucasian, Female]; “Panic, call main clinic repeatedly until seen.” [41–55 years old, Caucasian, Female]

3.9.2. Theme: proactive approaches

When unable to acquire their pain medications, many respondents tried to utilize over-the-counter treatments or CIH therapies to alleviate symptoms, including heat or cold, exercise, relaxation techniques, and meditation. “Use alternative methods to reduce pain (ice, heat, OTC pain meds).” [26–40 years old, Caucasian, Female]; “Visualization, progressive muscle relaxation, meditation, vitamins, and herbal supplements” [41–55 years old, Caucasian, Female]

Some individuals described a very proactive stance toward their pain care: “Exercise, lifestyle changes, cognitive behavior therapy, chiropractor, massage … ” [18–25 years old, Caucasian, Male], actively pursuing alternative remedies: “A topical lotion with the many active ingredients … ” [56–65 years old, Caucasian, Female]. Other common alternatives to their routine pain medications included ketamine infusions, interventional pain injections, intrathecal pumps, and nerve blocks, “At times I would resort to using ketamine infusions, lumbar sympathetic blocks, and stellate ganglion blocks…” [41–55 years old, Caucasian, Female]; “I regularly used spinal cord stimulator, morphine pump, and soaking in hot water/bath every day … ” [41–55 years old, Caucasian, Male]

3.9.3. Theme: self-medication

A substantial number of respondents expressed resorting to more risky self-administered approaches, such as using marijuana, alcohol, or even stealing medicines from family or friends to cope with discomfort and mitigate their symptoms. For example: “Consume and smoke as much pot as I can. Go through […] withdrawals cold turkey – highly dangerous I might add because of the many meds, and the many diagnoses I suffer from.” [56–65 years old, Caucasian, Male]; “Suffer, use alcohol. A few months ago I was late for an appointment with a pain specialist and he wouldn’t see me for 5 days and according to my contract I could not seek help elsewhere so I was very sick for 5 days.” [56–65 years old, Caucasian, Male]

A few individuals even expressed how they would buy illicit drugs ‘off the streets’ as a method to obtain opioids to meet their health needs and alleviate pain: “I started using illegal opiates after I was not able to get medication. I had no history of abusing prescription medication until this but found withdrawals and the existing pain too much to handle.” [41–55 years old, Caucasian, Male]; “I have fraudulently called in prescriptions and bought them off the street…” [26–40 years old, Caucasian, Male]

3.10. Category 3: barriers to accessing pain medications

This category identified barriers to accessing pain medications and effective pain management strategies that encompassed healthcare provider, pharmacy, and geographical types of barriers, and insurance-related complexities, collectively imposing substantial burdens on persons seeking pain relief.

3.10.1. Theme: healthcare provider barriers

Many respondents described challenges they encountered when seeking prescriptions for pain medications from their clinicians. One recurring issue that emerged was the hesitancy of clinicians to prescribe opioids, leading them to choose alternative treatment options: “Primary doesn’t want to prescribe opioids, he is afraid of the state […] monitoring him, I had to go into pain management.” [56–65 years old, Caucasian, Female] “My primary care doctor and my spine specialist refuse to write opioids for any of their patients” [41–55 years old, Caucasian, Female]

The comments provided by the respondents depicted their negative experiences with clinicians who, in turn, exhibited a sense of unease regarding the potential legal or professional impacts in association with opioid prescribing. One respondent summarized this issue in the following way: “Because he doesn’t want to lose his license, he prescribes the absolute minimum in pain pills often leaving us the patient without sufficient pain relief.” [41–55 years old, Mexican American, Female]

Furthermore, individuals provided accounts of situations, in which their clinicians decreased the prescription medicine dosages. “ … Once I came back to my doctor, he no longer wanted to prescribe the same number of meds to me and reduced my dosage.” [56–65 years old, Caucasian, Male]

Many respondents reported needing to see a pain specialist to obtain pain medications, yet experiencing challenges with accessing specialty care due to limited availability of pain specialists. For example, one respondent said, “I have had to contact several doctors, pain doctors are hard to find in my area.” [41–55 years old, Caucasian, Female]

3.10.2. Theme: pharmacy barriers

Along with provider-related barriers, respondents frequently expressed concerns about the lack of uniformity in their ability to fill their prescribed medications, as some pharmacies encountered difficulties sustaining a sufficient inventory of specific medications. As one individual remarked, “Sometimes I have to go to 5 or 6 pharmacies locally to get my medication because they never have it in stock when I need it.” [41–55 years old, Caucasian, Female]

This lack of consistency resulted in frustration and impeded respondents’ ability to fill their prescriptions, intensifying their experience of pain. “Their orders are not being fulfilled! They are being cut! Ultimately, patients suffering! Currently I have been waiting 8 days from 3 rite aids and 2 cvs for a rx I can’t fill!” [26–40 years old, Caucasian, Female]

Discrimination encountered in pharmacies were commonly reported, with many individuals sharing accounts of being subjected to judgment or stigmatization by pharmacy personnel. As stated by a respondent: “First time I went to Rite Aid, the pharmacist took one look at me and said no, I was refused medications and discriminated…” [18–25 years old, Mexican American, Female]

3.10.3. Theme: geographical and travel barriers

Transportation and geographically-driven obstacles to reaching healthcare practitioners and pharmacies were often noted by the respondents. “I have to travel an hour and a half each way (at a minimum) to obtain a written prescription from my physician when I need refills.” [41–55 years old, Caucasian, Female]

Considerable distance to healthcare practitioners and pharmacies often impeded the prompt renewal of prescriptions and posed a substantial challenge, especially for those living in rural regions who sought specialty care. “Rural clinic took on a new doctor who refused to treat any chronic pain patients, I had to find another doctor who is located 126 miles from my home, I travel over 4+ hours round trip monthly for Rx.” [56–65 years old, Caucasian, Female]

3.10.4. Theme: health insurance

Many respondents disclosed that certain insurance plans did not provide coverage for their medications, resulting in considerable financial and other hardships when seeking treatment. A respondent articulated this by stating: “Health insurance is also giving me a hard time because the pharmacy changed my prescription dosage to get it filled, and now my insurance won’t cover a higher dosage.” [56–65 years old, Caucasian, Female]

Some individuals also expressed not being able to continue their pain care due to insurance restrictions, “Was unable to continue seeing pain specialist due to insurance change and then loss.” [41–55 years old, Caucasian, Female]

4. Discussion

This cross-sectional survey study documented that a substantial proportion of adults with chronic pain encountered difficulties in receiving pain care and accessing pain medications, even though nearly all depended on prescription medicines for pain relief, with associated suffering, and adverse health consequences including suicidal ideation, and physical and emotional suffering.

The study identified several significant differences between persons who reported issues with obtaining prescriptions for pain medications and those who did not report such issues, shedding light on the multifaceted factors that may contribute to the individual experience of chronic pain. Individuals who had problems obtaining prescriptions for pain medications were more likely to run out of pain medications, not have a clinician, and worry about their opioid medication being stolen or misused by others, suggesting complex safety implications associated with more restricted access to pain medications. On the other hand, those who did not experience issues with obtaining their prescriptions tended to live in rural areas, drive longer distances to see their clinicians and to fill their prescriptions, including out of state, and relied less on large retail pharmacies, suggesting they had intentionally created environments, which enabled continued access to their pain medications at the expense of convenience (e.g., driving shorter distances), while those who experienced issues obtaining prescriptions relied more on local providers to prescribe/dispense the medications.

The overall extensive difficulties in securing continued, uninterrupted access to pain medications and overall pain care, despite the heavy reliance on prescribed pharmacotherapy for pain management, underscore systemic barriers to pain care, especially when it involves opioids. Reasons for running out of pain medicine included exceeding prescribed doses due to inadequate pain control, with a notable portion experiencing suicidal ideation due to insufficient pain relief, highlighting further both personal and systemic challenges in pain care that can lead to medication scarcity with suboptimal pain control. Our findings further contribute to the understanding of these challenges by documenting the real-world consequences of these medication access issues, which have been exacerbated by increasing regulatory restrictions and stigma, ultimately leading to worsened patient outcomes. The respondents also reported pervasive disparities and stigma associated with pain care involving opioid therapy. The toll of undertreated pain, due to medication access challenges, was already profound at the time of this survey, which took place in 2014–2015. Unfortunately, the scope of this problem has likely further worsened after 2016, when the initial Centers for Disease Control and Preventions (CDC’s) guidelines on opioid prescribing in chronic non-cancer pain were issued [17].

These findings underscore the importance of assessing the patient-level effects of policies, regulations, guidelines, and shifts in treatment and prescribing practices. Additionally, they highlight the need for targeted interventions to mitigate the adverse consequences that reduced access to opioid medications may have on patient well-being. Prior research has emphasized individuals’ difficulties in obtaining pain medicine and their dependence on prescription pharmaceuticals for pain relief [23,25,26]. However, our study offers a deeper understanding of the obstacles encountered by patients, including geographical limitations affecting prescription access, and worries about substance misuse and mental health consequences. Moreover, our study advances the field by highlighting the critical intersection of opioid access with broader social and psychological factors, such as stigma and emotional distress, which have not been sufficiently explored in previous research. In addition, although prior studies have focused on the high prevalence of chronic pain and the utilization of prescription medications [27], this study explored the intricate causes as well as impacts of medicine shortages, and the psychological and physical toll felt by persons dealing with insufficient pain alleviation. To address these complexities more effectively, interventions could prioritize improving telemedicine services and healthcare infrastructure, especially in rural areas, supporting community-based programs for mental health and addiction, and fostering collaboration between healthcare providers, payors, and policymakers to ensure adequate access to pain care [23,28,29].

Our thematic analyses found numerous reports of respondents voicing challenges associated with subpar pain medicine access with both physical and emotional anguish, which hindered their capacity to engage in crucial everyday tasks, such as working, child-rearing, movement, nourishment, and sleep. Notably, many respondents conveyed their experiences of contemplating suicide and seeking emergency and urgent care as a result of their inability to obtain medications from “regular” providers and alleviate suffering. These findings align with those from recent studies, which noted worsened suicidal ideation, pain, function, and quality of health (QoL) among many patients whose long-term opioid therapy was tapered or discontinued [30,31]. The available evidence, although limited, indicates that healthcare professionals must carefully evaluate the pros and cons of tapering opioid medications used for chronic pain care, and engage stable patients in shared decision-making about long-term opioid therapy management [19,32,33].

An examination of demographic data and responses revealed some potential patterns. For example, individuals in rural areas who faced fewer challenges with obtaining pain medications often reported more stable access and greater reliance on local healthcare providers. Conversely, individuals facing barriers to medication access frequently indicated that their pain management involved significant disruptions, such as a reliance on emergency or urgent care settings, often exacerbated by stigma. Additionally, respondents from specific socioeconomic or geographic backgrounds seemed to report differing levels of concern regarding medication misuse, with rural populations exhibiting heightened concerns about opioid theft or misuse. These patterns suggest that while further statistical analysis would be necessary to establish formal correlations, there may be distinct relationships between patient demographics and their experiences with accessing care.

As a result of the distress and negative consequences faced by patients who encountered challenges in accessing pain medications, we discovered that a significant number of respondents turned to healthcare professionals and emergency departments for assistance. Nevertheless, this method was not uniformly effective since patients frequently encountered distrust from healthcare practitioners and societal prejudice linked to seeking opioids in emergency or urgent care environments. The lack of trust may be linked to several factors, such as worries about the misuse of opioids or doubt over the truthfulness of patients’ assertions about their pain level [34,35], as well as the societal and regulatory push toward reduced opioid prescribing as a means to curb the opioid crisis. The erosion of trust not only endangers the clinician-patient relationship but can also have significant implications for the quality of care delivered [36], and may be a sign of the widespread stigma surrounding opioid therapy [34,37].

Obtaining prescriptions for pain medications from primary care providers was noted as challenging, with many clinicians exhibiting hesitancy due to concerns about legal and other consequences. Multiple studies have yielded consistent findings, demonstrating that physicians are apprehensive about regulatory scrutiny regarding prescribed opioids, and that the worries about the potential negative personal and professional consequences deter clinicians from prescribing opioids to alleviate pain, especially chronic nonmalignant pain [23,38,39]. However, studies have also demonstrated that the absence of clearly defined standards and pain management protocols can greatly influence healthcare professionals’ behaviors, contribute to substantial variations in opioid prescribing [10,40], and might be a possible contributor to clinicians’ lack of confidence in effectively managing chronic pain [41].

4.1. Future directions

Our findings underscore the need for healthcare systems and providers to be better equipped to meet the needs of patients seeking chronic pain management. This calls for a multi-faceted approach, encompassing enhanced education and training for healthcare professionals regarding pain management and opioid therapy, and the societal prejudice and stigma associated with opioids [36,42]. Moreover, it is crucial to adopt a more patient-centered, holistic strategy for pain management that focuses on improved communication between patients and their healthcare teams [10]. In terms of opioid tapering, providers should consider developing an evaluation plan tailored to the specific needs of each patient, while also considering the potential dangers of too-quickly reducing or stopping opioids [43,44], and the approach to tapering process, such as the rate of tapering and the use of additional medications to mitigate any withdrawal symptoms [45,46]. Lastly, policymakers should enact regulations and enforcement policies that ensure the protection of providers who engage in caring for patients with complex chronic pain on opioids in an appropriate and ethical fashion.

4.2. Strengths and limitations

The study’s strength was the use of a survey developed by healthcare professionals, American Chronic Pain Association (ACPA) staff, and individuals with chronic pain experience, and its pragmatic deployment in real-world settings, i.e., among the ACPA members; this likely improved the survey’s external validity. The utilization of a consensus-based checklist for reporting of survey studies (CROSS) framework for reporting of the survey findings ensured a thorough, organized approach, combining evidence-based and expert consensus-based features to improve the quality of result reporting [47]. Furthermore, the study’s reliance on qualitative open-ended responses provided rich insights into the emotional distress, physical limitations, and systemic barriers experienced by participants, even though standardized quantitative measures, were not utilized.

Despite the strengths, the pragmatic approach to the survey development and deployment also led to some shortcomings, such as not applying the CROSS recommendations during the study design phase. Moreover, incomplete survey responses and lack of safeguards to prevent “multiple participation” of a given respondent were also limitations. The reliance on Yes/No responses to assess chronic pain experiences and the lack of explicit questions about chronic pain or opioid use in every survey item represent limitations, despite the collaborative development of the survey ensuring the study’s intent was captured. In addition, while qualitative responses indicate that respondents were primarily people with chronic pain treated with pain medications, suggesting that the intent of the study was captured, survey questions did not specifically ask about chronic pain or opioids. Finally, while the survey was conducted before the release of the 2016 Centers for Disease Control and Prevention (CDC) opioid prescribing guidelines, the findings remain highly relevant, as they highlight enduring systemic barriers, geographic disparities, and stigmatization faced by patients. These insights, though contextualized within a pre-2016 framework, underscore critical issues that continue to inform pain management strategies in a post-guideline landscape.

5. Conclusion

This survey study shed light on the pressing issues faced by adults suffering from chronic pain requiring prescribed analgesics: the pervasive scope of difficulties in obtaining pain medication and accessing pain care that, in turn, lead to deleterious quality of life, and physical and mental health impacts, including suicidal ideation. It is imperative to adopt a multi-faceted approach to enhance pain management and care access in this population and address the societal bias and negative perceptions associated with chronic non-cancer pain care. Moreover, clinician education and adoption of a more patient-centered, personalized, holistic strategy for pain management and (when needed) opioid tapering are important to ensure adequate pain management and alleviate suffering.

Funding Statement

The authors received no funding for this work.

Article highlights

Introduction

• Chronic pain is a significant public health issue with widespread physical and psychological consequences.

• Opioids have been used as a “last resort” treatment for managing chronic pain, but their use is controversial due to associated risks.

• Efforts to reduce opioid prescribing due to the opioid crisis have led to stricter guidelines and increased patient challenges in accessing pain medications.

Materials & Methods

• The study uses data from a survey conducted by the American Chronic Pain Association (ACPA), gathering responses from 1,001 individuals with chronic pain.

• Quantitative data was analyzed to assess patient demographics, healthcare access, and barriers to obtaining prescribed medications.

• Qualitative data was analyzed using thematic analysis to explore patient experiences and coping mechanisms related to medication access.

Results

• Over 50% of survey respondents reported significant difficulties accessing pain medications, leading to unmanaged pain, psychological distress, and suicidal ideation.

• Patients with limited access to medications had poorer health outcomes, including increased anxiety, depression, and social isolation.

• Strategies adopted by patients to cope with medication access challenges include seeking alternative treatments and self-medication, with some turning to illicit drugs.

Discussion

• Findings highlight the urgent need to address systemic and personal barriers to accessing pain medications.

• A patient-centered approach to pain management, including shared decision-making, is essential to improving patient outcomes and quality of life.

• Policymakers and healthcare providers must work together to implement more flexible and individualized pain care strategies.

Conclusion

• The study emphasizes the detrimental impact of prescribing restrictions on patients with chronic pain and the importance of addressing these challenges through a comprehensive, evidence-based pain management approach.

• Long-term solutions should focus on ensuring adequate access to appropriate pain care while minimizing the risks associated with opioid use.

Author contributions

Matthew Carrillo: Conceptualization, Methodology, Software, Validation, Investigation, Writing – Original Draft, Writing – Editing and Review, Visualization

Jessica Yingst: Validation, Formal Analysis, Resources, Writing – Review and Editing, Supervision, Project Administration

Wen-Jan: Software, Formal Analysis, Data Curation

David Giampetro: Writing – Editing and Review, Supervision, Project Administration

Jennifer Nyland: Writing – Editing and Review, Supervision, Project Administration

Aleksandra E. Zgierska: Conceptualization, MethodologyWriting – Editing and Review, Supervision, Project Administration

Disclosure statement

AEZ holds an uncompensated position as the American Society of Addiction Medicine’s Vice President and Board of Directors member. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Ethical declaration

This study utilized data from a prior survey conducted by the American Chronic Pain Association (ACPA) between 2014 and 2015. The survey was designed and deployed by Penney Cowan, the founder and former Chief Executive Officer of the ACPA, who granted permission for the authors to access and analyze the collected data. As the authors were not involved in administering the survey, they did not oversee informing participants about the research aims, data collection or storage methods, or associated risks. However, the survey was conducted anonymously, ensuring that no identifying information was collected.

As stated by Penney Cowan: “It was an anonymous survey done online. Those who took the survey did so of their own free will, and the ACPA has never collected or retained any personal information about our members. Since there was no identifiable personal information, there was no need for any IRB. We are a nonprofit organization that has been doing online surveys for as long as that system has been available. It is a cost-effective way for us to understand our membership and what their needs are and understanding of topics.”

The study did not meet the definition of human subject research as defined in 45 CFR 46.102(e) and/or (i); therefore, review and approval by an Institutional Review Board (IRB) was not required. Nevertheless, the principles of ethical research were upheld. Participants’ confidentiality and anonymity were protected throughout the data collection process, and no data breaches or risks to participants were identified. Any legal requirements related to data protection at the time of the survey were adhered to by the ACPA.

Data availability statement

The data underlying the findings of this study are not publicly available. The survey data, including both quantitative and qualitative responses, were shared with the research team by the American Chronic Pain Association (ACPA) in an anonymized format. Given the sensitive nature of the data, particularly concerning personal health information, we have opted not to make the full dataset available. Additionally, the quantitative and qualitative findings necessary to understand the study’s outcomes are fully presented in the manuscript, and we believe these analyses sufficiently capture the essence of the respondents’ experiences and challenges with accessing pain medications. Further, the study did not meet the criteria for human subject research, as defined by 45 CFR 46.102(e) and/or (I), and did not require Institutional Review Board (IRB) approval. Consequently, the dataset is not available for public access in alignment with privacy and confidentiality considerations.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17581869.2025.2463865