Abstract
Objective:
The overuse of prescription opioids for chronic pain is recognized as a public health crisis. Yet, poor access to nonpharmacologic treatments is the norm in low-income, racially and ethnically diverse patients with chronic pain. The main objective of this study was to understand how chronic pain impacts low-income individuals with chronic pain and their communities from multiple perspectives.
Design:
This was a qualitative study using a Science Café methodology.
Setting:
The Science Café event was held at an urban community center in Boston, MA.
Subjects:
Inclusion criteria included the following: having the ability to attend the event, being at least 18 years of age or older, and participating in English.
Methods:
Data were collected through self-reported questionnaires and audio or video recordings of two focus groups. Quantitative and qualitative data were analyzed with SAS 9.3 and NVivo 10.
Results:
Thirty participants attended the Science Café event. The average age was 45 years, 77% reported as female, 42% identified as black, and 19% as Hispanic. Participants identified themselves as either patients (46%) or providers (54%) to the chronic pain community. Our forum revealed three major themes: (1) nonpharmacologic options for chronic pain management are warranted, (2) larger sociodemographic and contextual factors influence management of chronic pain, and (3) both patients and providers value the patient-provider relationship and acknowledge the need for better communication for patients with chronic pain.
Conclusions:
Future research should consider identifying and addressing disparities in access to nonpharmacologic treatments for chronic pain in relation to underlying social determinants of health, particularly for racially and ethnically diverse patients.
Introduction
In 2015, ∼56% of adults in the United States reported having daily chronic pain in the last 3 months. 1 This prevalent health condition is complicated by multiple socioeconomic factors, such as race/ethnicity, income levels, and neighborhood. 2 Health care disparities in chronic pain experience and treatment tend to correlate with low-income and racial/ethnic categories. 3 –6 Patients in the lowest wealth quartile are 58% more likely to report they have chronic pain compared to those in the wealthiest quartile; both non-Hispanic blacks and Hispanics also tend to deem their pain levels more severe relative to non-Hispanic whites (8.8% and 8.3% vs. 4.9%). 7 While there are various pharmacologic pain treatments available, the majority of patients report only mild-to-moderate relief. 3 This article reports the findings of a Science Café event attended by patients with chronic pain and various stakeholders (e.g., health care providers [HCPs], family, friends, and other community members) discussing chronic pain's effects on the community and access to nonpharmacologic treatments.
Today, prescription opioid abuse is recognized as a public health threat in the United States, 8 and is associated with a rise in fatal opioid overdoses. 9,10 In addition, the high prevalence of chronic pain and opioid abuse is especially apparent in low-income communities and urban areas. At the same time, HCPs and their patients are challenged to choose the most affordable, accessible, effective, and safest treatments for the complex illness of chronic pain. Patient-provider communication may suffer not only because of time constraints but also because of new prescribing requirements and laws, patient preference for treatment options, and the stigma of chronic pain and opioid use. 5,11 –17
Integrative medicine (IM), which focuses on nonpharmacologic techniques, offers a different avenue to manage chronic pain by considering the full range of influences that affect a person's health. 18 Specifically, IM chronic pain treatment involves multimodal interventions—including conventional and complementary approaches—to personalize care and improve overall health status. 18 Prior IM studies have shown reduction in pain, increased function, and enhanced quality of life. 19 –24 Despite these promising results, utilization of such modalities differs across patients with chronic pain by selected characteristics: race/ethnicity, education level, poverty status, and health insurance status. 25,26
Few qualitative trials have focused on perspectives of patients with chronic pain and the effects of pain on their individual and family members' lives. None to date has examined the perspectives of multiple stakeholders. 27,28 Most qualitative researchers have either reported only one perspective or recruited both patients and providers to offer feedback in separate groups. 17,29,30 By holding a Science Café, we brought together stakeholders from different backgrounds in the Boston community to discuss how chronic pain, opioid use, and experiences with nonpharmacologic therapies impact both individual and community levels. Our qualitative study is the first to (1) involve predominantly racially and ethnically diverse patients (e.g., African American and Hispanic) affected by chronic pain and (2) include various stakeholders within the same focus group in an urban setting.
Methods
Design
Science Cafés are live events that encourage conversation, debate, and dialogue between the scientists and the public. 31 In this case, our Science Café aimed to provide a public forum for discussing the Boston community's experience with chronic pain, as well as to gain information about treatment preferences (e.g., nonpharmacologic and medication) for chronic pain, and their effects on individuals and families from the perspectives of various stakeholders. The Science Café was a one-time, 2-h long event held on a weekday evening at an urban community center.
This study was approved by the Boston Medical Center (BMC) Institutional Review Board.
Recruitment and enrollment
Recruitment flyers were placed in primary care outpatient clinics, community health centers, and community organizations throughout the Boston area. By e-mail or telephone, research assistants (RAs) contacted the leaders of local community organizations to either invite them to participate and/or ask them to inform their members about the event. Stakeholders were also encouraged to contact other members in their family or neighborhood to attend the event. After their contact information was provided by stakeholders, RAs contacted potential participants by telephone or e-mail to further explain the study, screen for eligibility, and obtain informed consent. Other people who were interested also reached out to the RAs directly by telephone or e-mail, were screened for eligibility, and gave informed consent. Inclusion criteria included the ability to travel to the community center on the designated date, older than 18 years of age, and ability to provide informed consent and participate in the Science Café discussion in English. Participants provided verbal consent to the study over the telephone. Upon arrival to the event, participants received a paper copy of the consent form, were asked to consent for audio and/or video recordings of the focus groups, and completed a brief survey.
Implementation of Science Café
Upon arrival at the event, attendees were asked to fill out a brief survey, invited to share a simple meal, and asked to write on large posters boards with the prompt, “What does chronic pain mean to you?” Next, the principal investigator (PI) presented an overview of chronic pain in the Boston area. Participants were then invited to join one of two focus groups based on their consent: focus group 1 with audio and video recording, and focus group 2 with audio recording only. Groups were moderated by experienced qualitative researchers (a medical anthropologist or an occupational therapist) using a semistructured guide (Appendix 1).
Data collection
The following information was collected through self-reported questionnaires: demographics (including age, sex, race, and ethnicity), relationships to person with chronic pain (e.g., self, family member, HCP, volunteer, community member), reasons for attending the Science Café, how participants heard about the event, and their chronic pain levels. Data were collected from both patients and providers. Providers were broadly defined as anyone who had a connection to the chronic pain community through employment or volunteer work.
Data analysis
Descriptive statistics were used to analyze survey information. Means and standard deviations as well as frequencies and percentages were calculated for demographic characteristics. Comments from participants for specific questions were categorized and summarized into numbers. Fisher's exact test was used to test the association between different variables, which accounted for the small numbers (<5) in table cells. All quantitative analyses were conducted using SAS 9.3 software. 32
One RA transcribed both groups' transcripts from audio recordings. Two RAs trained in qualitative methodology independently coded both transcripts using NVivo 10 qualitative data analysis software. 33 The initial coding pass used a priori codes derived from the moderator guide. Using modified grounded theory, coders also inductively generated new codes. After transcripts were coded, the two RAs and PI reconciled the codes and resolved any difference by consensus and transcript review. The PI was not involved in the initial coding, and primarily served to resolve differences found between the two initial coders. Three RAs viewed the video recording of focus group 1 to assess nonverbal agreement (i.e., nodding) and dissent (i.e., head shaking) to participant responses during the discussion. From audio and video reviews, affirmation categories were created: low affirmation was defined as two participants or less agreeing to a response or statement, medium affirmation was defined as three to four participants, and high affirmation was defined as five participants or greater.
Coders identified high density codes and combined similar codes into categories, which were shared with the research team. Larger themes were created and defined, including (1) experiences with pharmacologic and nonpharmacologic treatment, (2) intersection of chronic pain with other health determinants, and (3) relationships between patients and providers.
Results
Quantitative results
Out of 40 people contacted for the event, 30 participants attended the Science Café event. Out of 26 participants who filled the surveys, the mean age was 45 years of age (range: 26–74 years) and 77% reported as female. Forty-two percent identified as black; 16% as white; 23% as other races; and 19% as Hispanic (Table 1).
Demographics of Participants in the Science Café
Reported as mean (std); remaining values in the table are reported as n (%).
One answer can be applied to multiple categories.
Other includes the following: “research purposes” and “unknown.”
Participants either had personal experiences or familiarity about others' experiences with chronic pain. Eighty-one percent reported having a history of chronic pain, and 65% reported having family member(s) with chronic pain. Fifty-four percent reported themselves as providers to the chronic pain community. Of those providers, 64% reported a current or past experience with chronic pain. In regard to the relationships between different variables, having chronic pain was significantly related to having family member(s) with chronic pain (p = 0.03). In addition, being a provider was significantly associated with having chronic pain (p = 0.04).
Reasons for attending the event are presented in Table 2; specific participant comments can be found in Appendix Table A1. Thirty-eighty percent of participants reported that they wanted to learn more about chronic pain, while 15% were seeking help or alternative care for chronic pain. Appendix Table A2 provides information on how participants heard about the Science Café event.
Reasons for Attendance and How Participants Heard About the Science Café
Two participants (8%) did not answer both questions, which were counted as missing.
One answer can be applied to multiple categories.
BMC, Boston Medical Center.
Qualitative results
Based on our analysis, we focused on three overarching themes: (1) nonpharmacologic and pharmacologic treatments for chronic pain, (2) contextual factors (health, financial, and social) affect access to chronic pain treatment, and (3) patient and provider perspectives on chronic pain in the health care system. Quotes listed in Tables 3 –5 were generally met with medium-to-high affirmation, noted by verbal agreement (i.e., “yea(h)”) and/or body cues (i.e., nodding).
Theme 1: Nonpharmacologic compared to pharmacologic management for chronic pain
Participants consistently discussed both pharmacologic and nonpharmacologic methods to manage or treat chronic pain (Table 3). Specific nonpharmacologic methods included the following: herbals, yoga, water (aerobics) therapy, exercise, relaxation, body scans, physical therapy, meditation, acupuncture, and home remedies.
Nonpharmacologic and Pharmacologic Methods to Chronic Pain Management
All quotes were from patients with chronic pain except where indicated.
Quotes listed were met with medium affirmation (three to four persons in agreement).
Quotes listed were met with high affirmation (five or more persons in agreement).
Generally, participants positively endorsed nonpharmacologic therapies for chronic pain management. Specifically, they observed and shared the benefits of using these types of methods: “I participated in integrative medicine… and it was probably the calmest time of my life, and… I wasn't in pain. I wasn't in pain the whole time.” Two participants mentioned that yoga helped to manage their chronic pain both physically and mentally.
On the other hand, some participants characterized pharmacologic methods negatively due to their limitations and their associations with addiction. Limitations, including medication ineffectiveness and unwanted side effects, appeared to outweigh the benefits of pain medications, with one participant even commenting that they “tried everything and it's like nothing's working.” When explaining perceptions of addiction, participants reported concerns in becoming addicted to the medication itself as well as the stigma of addiction that may be associated with taking medication. There was no explicit mention or discussion of nonopioid pharmacologic therapies.
Theme 2: Financial and social factors that are implicated in barriers to care
Participants also highlighted factors beyond direct therapy that impacted their chronic conditions (Table 4). Participants noted barriers to accessing and receiving adequate care, including nonpharmacologic therapies for chronic pain. As one person phrased, “It's just so many different things… those are all really great ideas. They're really great approaches to helping people cope with chronic pain, but if you can't really access them, they don't help.” Several participants mentioned difficulty in obtaining such resources, making them less able to properly manage their care. Similarly, one provider offered their experience as part of a care coordination program to emphasize the issue of accessibility: “…if we talk to someone about how to get to a food pantry where there's food access if you know, you can't actually access that service if you're in chronic pain and just the barriers of trying to get basic needs met while experiencing chronic pain.”
Health, Financial, and Social Factors That Affect Chronic Pain or Are Affected by Chronic Pain
All quotes were from patients with chronic pain except where indicated.
Quotes listed were met with medium affirmation (three to four persons in agreement).
Quotes listed were met with high affirmation (five or more persons in agreement).
Nonmedical needs included work/financial security, health insurance, and community resources. Other factors discussed frequently included health supply challenges, incomplete fulfillment of nonmedical needs (housing and healthy food), and relationships with family, friends, and HCPs.
Theme 3: Patient and provider perspectives on chronic pain in the health care system
Comments from both patients and providers reflected commonly identified subthemes on chronic pain within the health care system (Table 5).
Patient and Provider Perspectives on Chronic Pain Management in the Health Care System
Quotes listed were met with medium affirmation (three to four persons in agreement).
Quotes listed were met with high affirmation (five or more persons in agreement).
The first subtheme both patients and providers highlighted was the notion that chronic pain is not well understood or easy to treat. Patients felt that current HCPs had difficulty understanding when their patients were experiencing chronic pain and “can't [even] tell if you have chronic pain.” Some participants affirmed and agreed with that statement. Several providers added that more information was necessary to improve chronic pain treatment and management.
The second subtheme both patients and providers shared was the importance of the patient-provider relationship in treating chronic pain. Many patients explained that they only wanted to be listened to and have a voice when interacting with their doctors. Relatedly, one provider shared that their “primary responsibility is to listen” to their patients, which was met with responses of verbal agreement by patients in the same group. Other patients mentioned their desires to have actual, trusting relationships with their providers.
The third subtheme both parties discussed was the different types of stigma that affected the quality of health care for chronic pain patients. Specifically, these stigmas pertained to providers' assumptions of characteristics of chronic pain patients and the subsequent impact those perceptions had on the quality of care. Types of stigma identified by patients included addiction, narcotic use, homelessness, and race. Some patients discussed being denied medication for chronic pain due to the stigmas of addiction and recurrent narcotic use; other patients commented on their personal statuses of homelessness as reasons for receiving inferior care. In addition, specific comments were mentioned in relation to race; for example, one patient who identified as African American explained that in terms of chronic pain care, “we do get treated a little different from being African American… we do get treated a little different from Caucasians.”
Discussion
Patients, providers, and community stakeholders attending a Science Café elucidated three major themes: (1) nonpharmacologic methods to managing chronic pain are warranted, (2) larger contextual factors of health (i.e., individual, financial, and social) should be considered in care, and (3) both patients and providers agree that improved communication about chronic pain treatment and management is necessary.
Participants were interested in using nonpharmacologic methods to manage chronic pain due to concerns about pharmacologic treatments. These views are consistent with several qualitative studies, which have shown that patients found the use of prescription medication (i.e., opioids) as the primary solution to chronic pain management to be unnecessary and unwanted. 34 –38 Patient concerns about addiction to pain medications offer a new contribution: patients are not only concerned with the physical effects of being addicted to pain medication but also concerned about the stigma of addiction that may be associated with taking pain medication. As such, nonpharmacologic therapies may provide another option to relieve these concerns. However, despite strongly expressed interest in such modalities, patients of lower socioeconomic status (SES) may have more difficulties accessing these resources from a logistical and financial standpoint. 39 Often, these resources are not located in low-income neighborhoods or readily available after business hours. While several private insurances are starting to cover other therapies (including acupuncture, massage, and chiropractic), 40 many low SES patients tend to not have adequate coverage or disposable income to spend out of pocket. 41 Research is needed to understand the role of nonpharmacologic options for lower SES patients in reducing the risk of opioid overdose. Nonetheless, participants did not completely deny the role that pain medication played in treatment regimens for chronic pain.
Although nonpharmacologic treatments for chronic pain are warranted, other factors beyond direct treatment should be considered in the context of chronic pain. Using Maslow's Hierarchy of Needs as a theoretical framework, 42 we identified food insecurity, unstable housing, and lack of individual health necessities (i.e., insurance and assistive devices) as factors impacting adequate care for our patients. Lower SES individuals are more likely to experience food insecurity, live in public housing, and be diagnosed with chronic conditions. 43 –45 This may suggest that lower SES patients are financially constrained in accessing therapy options, as they may prioritize fulfillment of survival needs (i.e., food, shelter). However, more research is needed to study the complex relationship between these multifactorial influences and their impacts on chronic pain management.
The patient-provider relationship is an essential component of the health care experience; studies document disparities in the quality of communication, especially among low SES, racial, and ethnic patients. 46 –48 In our study, we found that patients were less likely to perceive their providers positively because of their race and/or ethnicity; White-Means et al. confirmed similar findings. 48 There are also several types of stigma that can affect the patient-provider relationship. For example, stigmas of addiction (specifically, addiction associated with prescription opioid medication use) and homelessness have an impact on the chronic pain experience. Several participants expressed fear of being perceived by their doctors as an addict due to their regular prescription medication use; Hurstak et al. confirmed similar findings. 17 To address the need for improved care through open, effective communication between providers and patients with chronic pain, additional training may be required so that providers are more knowledgeable about chronic pain not only as a medical condition 49 but also as a chronic condition and a socioeconomic experience prone to inadequate care.
The main strength of using the Science Café approach lies with the setting. By using a community-based focus group and shifting the context away from a medical setting, 50 we created a friendly atmosphere that was inviting to all participants regardless of their backgrounds. As the study took place in a community center, the event was made accessible to patients with chronic pain, their families, and other stakeholders. This allowed both participants and the study team to stimulate discussion and engagement through informal communication processes.
Limitations to our study include a small sample size and specific inclusion criteria. Participants were persons who could attend a Science Café on chronic pain at a specific scheduled date and time. The Science Café was also conducted in English, excluding participants who are not fluent in English. For participants who identified as patients, being in the presence of HCPs may have prevented them from speaking freely (and vice versa). In addition, participants may have responded to moderators' questions favorably, knowing that this was a research study and that they were being reimbursed for their participation.
Conclusions
Findings from our qualitative study strongly suggest that there is room to improve the health care experience for chronic pain patients, particularly those who are racially and ethnically diverse and/or low income. These patients are interested in nonpharmacologic modalities as a substitute or an accompaniment to prescribed pain medications. Given the valuable feedback garnered from numerous stakeholders involved in chronic pain, future studies should also consider inviting multiple perspectives. The emergent state of the opioid crisis prompts further research to identify and mitigate disparities of chronic pain care in relation to the full range of physical, emotional, mental, social, and environmental influences that affect health.
Footnotes
Acknowledgments
We would like to thank Joann Donnelly for providing the community space for the Science Café event, and Brendan Ross for technical edits. This work was supported by the Aetna Foundation (Grant no.: 6003433).
Author Disclosure Statement
No competing financial interests exist.
