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Patients as Collaborators: Using Focus Groups and Feedback Sessions to Develop an Interactive, Web-Based Self-Management Intervention for Chronic Pain

Sarah K. Moore PhD, MSW, Honoria Guarino PhD, Michelle C. Acosta PhD, Ian David Aronson PhD, Lisa A. Marsch PhD, Andrew Rosenblum PhD, Michael J. Grabinski BS, Dennis C. Turk PhD
DOI: http://dx.doi.org/10.1111/pme.12200 1730-1740 First published online: 1 November 2013

Abstract

Objectives To describe the development of an interactive, web-based self-management intervention for opioid-treated, chronic pain patients with aberrant drug-related behavior.

Methods Fifty-three chronic pain patients participated in either focus groups (N = 23) or individual feedback sessions (N = 30). Focus groups probed interest in and relevance of the planned content and structure of the program. Individual session participants reviewed draft program modules and provided feedback on acceptability, ease of use, and usefulness. Focus group transcripts were thematically analyzed, and summary statistics were performed on feedback data.

Results Focus group participants stressed the need for additional pain management strategies and emphasized themes consistent with planned program content related to: 1) ambivalence about opioids; 2) reciprocal relationships among cognition, mood, and pain; 3) importance of recognizing physical limitations; and 4) effectiveness of goal setting for increasing motivation and functioning. Participants also offered insights on: 5) the loss of identity due to chronic pain; and 6) the desire to connect with pain peers to share strategies for managing daily life. Feedback session data demonstrate that participants believed that a web-based tool would be potentially useful and acceptable, and that exposure to program sections significantly increased participants' knowledge of key topics related to self-management of chronic pain.

Conclusions Results suggest the potential value of self-management for chronic pain patients and the potential acceptability of web-based delivery of intervention content. Focus group and feedback methodologies highlight the usefulness of including potential program users in intervention development.

  • Self-Management
  • Chronic Pain
  • Cognitive-Behavior Therapy
  • Internet

Introduction

The prevalence of clinically significant chronic pain in the US population has been estimated to exceed 100 million adults in the United States and is likely to escalate in the future due to many factors, including the aging of the population, the rising prevalence of obesity, and medical advances in saving the lives of people with devastating injuries . Chronic pain impacts all domains of function and may interfere with daily activities and relationships at home, work, or school. Individuals with chronic pain also may demonstrate maladaptive or dysfunctional behaviors, social isolation, poor sleep patterns, and frequent health care utilization . The annual economic cost associated with chronic pain in adults, inclusive of health care costs and lost productivity, is $560–635 billion in the United States .

The experience of chronic pain is affected by many factors: its characteristics and etiology; underlying pathology; and individual differences in genetic background, physiological and medical factors, and culture. The chronic pain experience is additionally affected by psychological, cognitive, and behavioral factors such as beliefs about pain, resilience, and coping; beliefs about the effectiveness and availability of treatments, environmental variables (e.g., physical layout of home, life stressors); and responses of both family and friends, and health care professionals . Chronic pain is typically addressed in the primary care setting. A very small proportion of patients are treated by pain specialists. There are numerous and diverse potential treatments, including drug therapies, so-called interventions (e.g., injections, nerve blocks, and implants), physical therapy, psychological, rehabilitative, and alternative modalities. It is a very challenging condition, however, and empirical evidence suggests only, “modest improvements in pain [severity] and minimum improvements in physical and emotional functioning” for patients receiving any type of treatment .

Opioid therapy is a standard of care for the treatment of moderate to severe pain associated with cancer . Although pain specialists generally agree that long-term opioid therapy can be safe and effective in carefully selected patients with chronic pain of other types, this use has become more controversial as the increased prevalence of this therapy has become associated with rising rates of adverse outcomes . With no adequate studies of long-term effectiveness , existing data that question efficacy in some patient cohorts and raise concerns about safety have led to efforts to improve patient selection and management strategies for long-term treatment. Among the issues that must be addressed as part of this effort is the potential for problematic nonadherence behaviors . This constellation of behaviors has been described as aberrant drug-related behaviors (ADRBs and may include: obtaining drugs from nonmedical sources; not following the prescribed dose and schedule; repeatedly seeking prescribed drugs from other providers or emergency rooms; and concurrent use of illicit drugs). Across 17 studies (N = 2,466) included in a recent structured evidence-based review, the prevalence of ADRBs among patients with chronic pain who were prescribed opioids was 11.5% .

If no single treatment significantly reduces pain and improves functioning for all people with chronic pain, a logical next step is to consider combinations of treatments—psychological, pharmacological, and physical —to maximize improvements in pain, functioning, and quality of life. Psychosocial factors have been shown to play a significant role in the experience, maintenance, and exacerbation of pain. It is now increasingly recognized that interventions that facilitate patients' self-management of symptoms are critical in restoring function and reducing pain severity and the distress associated with pain .

Chronic disease self-management support programs, including those focused on pain, have demonstrated improvements in clinical and behavioral outcomes, and reductions in health care utilization . Specifically, enhancing self-management skills among people with chronic pain has been shown to decrease pain severity and improve functional status . However, most self-management programs are delivered face-to-face and are limited by barriers to traditional clinic-based therapy for people living with pain, including low participation rates due to symptoms that limit mobility, the burden of travel to treatment sites, limited access to qualified providers, and cost .

Given the challenges of traditional delivery of behavioral health interventions, technology-based approaches, such as Internet- or mobile phone-based programs, have clear advantages. The effects of these innovative delivery systems rival the efficacy of traditional face-to-face interventions . Moreover, they have the advantages of offering privacy and anonymity, patient convenience, and are cost-effective. Technology-based approaches also extend the reach of evidence-based behavioral treatments into rural communities where access may be limited or nonexistent . Computer-based interactive technology has been used to deliver treatment interventions and strengthen prohealth behaviors in people with a number of chronic medical problems (e.g., arthritis , asthma , diabetes , human immunodeficiency virus , hypertension ). Computer-based treatments have also been developed for substance abuse prevention and for various psychiatric disorders (i.e., anxiety and depression). There is growing evidence supporting the effectiveness of technology-based interventions to promote health behavior change. Notably, comparisons of web-based interventions to person-delivered interventions report comparable outcomes .

Two recent systematic reviews of the efficacy of web-based cognitive-behavior therapy (CBT) for chronic pain, the most widely researched application of self-management interventions, concluded that most randomized controlled trials demonstrated significant reductions in pain for the CBT intervention groups compared with wait list control groups or usual care . However, some questions remain unanswered. First, additional research is required to determine the optimal role for web-based interventions as part of a combined therapy approach, such as in combination with pharmacotherapy . Second, of the different models evaluated thus far, none have been designed specifically for chronic pain patients with ADRBs . Third, as Keogh et al. have noted , many web-based tools claiming to be therapeutic have been developed in response to a technological innovation rather than being driven by user need. These authors and others suggest that the needs and perspectives of individuals in pain should be integral to the development process of web-based therapies. Finally, in a recent overview of why the Internet holds great potential for filling a gap in pain practice, the authors write: “The translation of an evidence-based intervention (e.g., CBT) into an electronic format is not a straightforward process. It requires the use of focus groups, expert consultation, beta testing, usability analysis, and outcomes assessment to conclude that a given e-health delivery platform has retained the efficacy of its more traditional face-to-face predecessor. Most currently available e-health offerings for pain have not established this level of validation” , p. 547.

With these issues in mind, the objectives of the current study were to: 1) describe the process of developing an interactive, web-based psychosocial treatment for opioid-treated, chronic pain patients with ADRBs that is grounded in CBT principles. The data presented herein are part of a larger effort described below to develop and conduct a randomized, controlled trial of this web-based intervention.

Overview of Development Process

Translating an evidence-based behavioral intervention into an electronic format can benefit from an iterative development methodology that includes input and feedback from both patients and professionals. To this end, the first step was soliciting and incorporating expert input (i.e., pain management—medical doctors [MDs], psychologists) into a draft outline of planned content that specified key intervention topics, the organization of each section, or module, of the program (see Table for a list of program modules), and a rudimentary description of interactive exercises. The concepts in the outline content were primarily drawn from two manuals on behavioral health treatment of chronic pain and focused on the main components that are generally recognized as representing CBT tailored for patients with chronic pain . The next step entailed conducting a series of four focus groups with opioid-treated chronic pain patients with ADRBs (i.e., people living with chronic pain) who provided input on all aspects of program content, structure, and presentation style. Based on input from the focus groups, the planned content and organization of the program was revised.

View this table:
Table 1

Topics of final modules

Introduction
Activity, Rest and Pacing
Education About Pain
Myths and Facts About Opioids and Addiction
Muscle Relaxation
Stress Management
Attention-diverting Coping Strategies
Automatic Thoughts
Challenging Automatic Thoughts
How to Prevent Pain from Ruining Relationships
Identifying and Managing Triggers for Misusing Medication
Effective Problem Solving (EPS)*
Using Effective Pain Management Strategies in Everyday Life
Goal Setting*
Calendar Feature (Goal Tracking)*
  • * All modules have a Part 1 and Part 2 except EPS (which stands alone) and Goal Setting and the Calendar Feature.

  • Note: The expected length of completing each part of a module is 20–30 minutes.

Development of the web-based program proceeded whereby each program section was developed by means of a cooperative effort by project collaborators who oversaw the preparation of the program content, as well as all technical aspects of the development including interactive program features (e.g., calendar on which to set goals and track progress, graphs showing pain interference and goals achieved, interactive quizzes), animation, graphics, and back-end tracking systems. This effort culminated in the creation of alpha versions of the modules. Both experts and project team members reviewed the initial versions and changes were made based on their feedback, producing beta versions of the modules.

A second sample of persons with chronic pain and ADRBs was then asked to provide feedback on the web-delivered program content and interactive features during one-on-one feedback sessions. Feedback sessions included surveys measuring perceived usefulness, likeability, ease of use, and so forth, assessed on 100 mm visual analogue scale (VAS) items (see Table for a complete listing of items), as well as pre-post knowledge tests for each module to assess mastery over content. According to predetermined criteria, any program aspect that received a score of less than 60 on the VAS would be revised based on patient feedback. This cut-point has been used for revising computerized modules in other projects conducted by members of our group . Also, based on prior experiences using knowledge measures as part of feedback sessions when developing and evaluating other web-based interventions within the research group, it was expected that participants' accuracy on knowledge measures would increase to 80–100% postsession. If this criterion was not achieved, the content of the knowledge test would be revised as necessary. Based on data from feedback sessions, final versions of the modules were prepared.

View this table:
Table 2

Individual feedback session VAS scores

M (SD)
Understandable?90.2 (10.03)
Easy to use?84.7 (16.72)
Likeable?82.6 (17.98)
Useful as part of treatment for chronic pain (CP) patients taking opioids?82.6 (15.8)
Useful?82.3 (18.57)
Interesting?81.6 (17.51)
Applicable to people with CP treated with opioids?80.6 (23.63)
Applicable to your life?77.1 (24.03)
Comparable to other previous education or treatment on this topic?76.3 (15.54)
New information?75.6 (26.73)
Change your behavior?70.2 (23.98)
Threatening?14.9 (18.28)
  • Visual analog scale (VAS): 0–100.

Methods

Design

A series of four audiotaped focus groups was conducted with opioid-treated, chronic pain patients with ADRBs. In responding to focus group questions, participants referred to their own lives and experiences with chronic pain to provide input about the web-based program. The focus group methodology was particularly well suited to this goal because, as authors of a recent study that used this methodology to improve understanding of chronic pain, “the chronic pain experience is both individual and collectively constructed … the complexities of individual perspectives are enhanced by group dynamics” . Additional patient input was elicited during 30 one-on-one feedback sessions conducted with participants drawn from the same population (see Overview of Development Process for more detail).

Participants

Participants for both the focus groups (N = 23) and individual feedback sessions (N = 30) were recruited from a large specialty pain treatment clinic in New York City. Inclusion criteria were: ≥18 years of age; experiencing chronic pain for ≥3 months; worst pain in the past week being ≥5 on a 0–10 point numerical rating scale (Brief Pain Inventory) ; maintained on opioid medication for pain; and endorsing at least four items associated with ADRB on the Current Opioid Misuse Measure (COMM) . Exclusion criteria included: primary headache pain, primary cancer pain, and an inability to understand or speak English. Participants in both focus groups and feedback sessions were compensated $50 for their time. An average of five pain patients participated in each of the four focus groups.

Procedures

All relevant institutional review board approvals were obtained prior to the commencement of the research. For focus groups, research assistants (RAs), in collaboration with a senior MD at the pain clinic, recruited eligible participants in the lobby of the pain clinic while people waited for appointments. Screening for eligibility was conducted in a confidential manner; for example, the COMM was administered by paper-and-pencil, and the RA then reviewed the form to determine eligibility without any discussion of individual items or criteria generally. Focus groups were conducted in-person in a conference room at the hospital hosting the pain clinic. For feedback sessions, an RA contacted individuals who had previously participated in studies conducted at the pain clinic and screened potential participants for eligibility over the phone.

The 90-minute focus group discussions were structured by sets of 8–10 questions probing the following areas: interest in web-based programs; how to increase the appeal of the program; how to motivate people to use a computer for self-management; interest in, and comprehensiveness of, module topics (see Table ); comprehension of and interest in interactive components (e.g., goal setting, graphs); acceptability of planned narration; program name; and recommendations for features to include in future iterations. Consistent with our iterative development process, focus group questions were refined based on input from each prior focus group before being presented to the current group. Feedback from the focus groups was incorporated into the development of the alpha version of the web-based program.

After the beta version of the program was developed, a new cohort of participants was recruited to participate in one-on-one 60–90-minute feedback sessions, which entailed participants reviewing specific program sections on a study computer with an RA nearby. After completing a brief demographic form, participants completed a 2–5-item presession knowledge test to probe baseline familiarity with the content of the section topic to be reviewed. Participants then completed the web-based section at their own pace, answered the knowledge test items again, and completed a brief 17-item survey inclusive of 12 VAS items and five open-ended response items (see Table for VAS items). Possible values for VAS scores ranged from 0 to 100 mm, anchored in terms of the variable of interest probed in the item. For example, for the first item—“how interesting was the section of the program you just completed?”—0 was anchored by the phrase “not interesting,” while 100 was anchored by “very interesting.” Most participants reviewed two sections in a single feedback session and completed separate pre/postsession knowledge tests and feedback items for each section.

Analysis

An outside consultant transcribed the focus group audiotapes and the project director (SM) reviewed the transcripts while listening to the audiotapes to ensure accuracy. SM and an ethnographer (HG) independently coded the transcripts and subsequently met to discuss discrepancies and reach consensus on a final code list. Using the constant comparative method , data were compared across the focus groups, and only themes that emerged across all four groups are included in the results.

For the feedback sessions, mean VAS scores were calculated for each item. Paired t-tests were used to compare pre- and postsession knowledge test accuracy data, collapsed across modules and participants.

Results

Participant Characteristics

Participants in focus groups and feedback sessions were: half male (51%); predominantly White (58%), Black (19%), and Mixed/Other (23%); 19% of Hispanic ethnicity; well educated (Associate's degree or greater education—60%); and generally unfamiliar with CBT (55%), with a minority reporting prior participation in any form of CBT (11%). When screened for ADRB eligibility, participants endorsed an average of 8 of a possible 17 items on the COMM and had an average scale score of 15.4, well above the clinical cutoff of 9 . Seventy-five percent or more of the sample endorsed four COMM items probing behavior occurring in the past 30 days: 1) gotten angry with people (87%); 2) had trouble thinking clearly or had memory problems (81%); 3) spent time thinking about opioid medications (e.g., having them, taking them, dosing schedule) (81%); and, 4) been in an argument (79%) (see Table for more detail).

View this table:
Table 3

Focus group and feedback session participant characteristics

Focus Groups (N = 23)Individual Feedback Sessions (N = 30)Combined (N = 53)
Age51 (13.3)53 (9.1)52 (11.1)
Gender
  Female(15) 65%(11) 37%(26) 49%
  Male(8) 35%(19) 63%(27) 51%
Ethnicity
  Non-Hispanic(16) 76%(27) 90%(43) 81%
Race
  White(15) 65%(16) 53%(31) 58%
  Black(2) 9%(8) 27%(10) 19%
  Mixed/other(6) 26%(6) 20%(12) 23%
Education
   <High school(2) 9%(7) 23%(9) 17%
  High school/GED(3) 13%(9) 30%(12) 23%
  Associates/BA(16) 69%(10) 34%(26) 49%
  Masters/PhD(2) 9%(4) 13%(6) 11%
COMM
  Mean # of items endorsed8
  Mean scale score15.04
Familiar with CBT?(10) 43%(14) 47%(24) 45%
Prior participation in CBT?(3) 13%(3) 10%(6) 11%
  • GED = general education diploma; BA = Bachelor of Arts; COMM = Current Opioid Misuse Measure; CBT = cognitive-behavior therapy.

Focus Groups

Data analysis revealed four themes (1–4) that were affirmations of planned intervention content. Two additional themes (5–6) offered insights into the lived experience of people with chronic pain and how web-based content might be tailored to address the needs of this population.

Themes Identified by Focus Group Participants

The first four themes reference topics that had been identified by the development team as essential for inclusion in the web-based program. (Semi-colons between quotes are used to signal a new speaker or participant.)

Theme 1: Ambivalence about opioid treatment is a pervasive theme that surfaced repeatedly throughout the focus groups, driven by misunderstandings and fears of addiction, a desire for alternative modes of treatment, as well as perceived stigmatization of opioid use. One woman said, “I see opioid treatment as prescribed addiction … it becomes blurry as to what you are actually treating—the opioid addiction or the pain that prompted the opioid treatment.” Comments by others suggested fear and greater ambivalence: “It [taking opioids] is kind of scary when you know that it's supposed to help the pain but then you are addicted to it also”; “I am taking eleven pills a day, man, and it's not doing anything. All I'm doing is just maintaining … the habit they [doctors] gave me”; “What concerns me is medication. All three medications I was taking stopped working … Percocet got me back on my feet again and my concern is that the medication will stop working.”

Ambivalence was further underscored by comments from participants that stressed disdain for opioid treatment. Responding to whether they might be willing to try a new form of treatment, one noted, “As long as it does not involve any more medication”; “[Responding to a read description of CBT] In no part of that description does it mention medication, which is a good thing”; and “Please give us something else … we want something else [other than opioids].” These sentiments are consistent with the COMM screening data results showing that 81% of participants endorsed spending some time in the past 30 days thinking about opioid medications (having them, taking them, dosing schedules, etc.).

Lastly, ambivalence about opioid use was linked to perceived societal stigmatization of opioid use for a few participants: “You are not going to be the same person anymore … until you get some decent pain management, you are just a drug seeker … like no medication until your urine test comes back and until your X-rays and MRIs come back to prove you're injured.” For another, “this is all madness in this country, you know. They just punish anybody who has anything to do with opiates.” Accepting the loss of the identity participants had prior to a diagnosis of chronic pain often implies the concomitant acceptance of the identity of someone who is restricted in their ability to develop to their potential due to the stigma associated with taking opioids to manage pain, especially pain that does not respond well to available treatments . It is not uncommon for doctors, family members, employers, and friends of people with chronic pain to wonder both privately and publicly whether they are actually in pain, drug-seeking, malingering, or just seeking disability assistance. The ramifications of stigma are often unintended but can be devastating to the recovery of the person with chronic pain . Our planned program sections addressing Myths and Facts about Opioids and Addiction, Education about Pain, as well as Identifying and Managing Triggers for Misusing Medication seemed particularly relevant and warranted in light of these focus group findings.

Theme 2: Attesting to the need for planned sections like Stress Management, as well as Education about Pain, many participants described the Reciprocal relationships among cognitions, mood, and pain. Stressing the interrelated and sometimes confusing nature of these relationships, one man said, “The effects of it [pain] and the causes become so blurred,” while two others echoed this sentiment: “Being treated for anxiety … that can often have a much greater effect on pain than any opioid [because] it seems to be treating the causes as opposed to the symptoms”; “My mood about my pain … doesn't always correlate anymore with how intense the pain is.” Another commented on pain and loss of control, “My head sits on top of my body for one reason, it controls everything underneath it and I control my head. But when it comes to this pain, all that goes out the window …” One participant lamented, “If you are dealing with a lot of emotional stuff, you just don't have energy left to deal with the physical.”

While the first two themes suggest a need for greater education and skills training among participants in the focus groups, the next two themes suggest that participants already had a good sense of some basic strategies for successful self-management. Theme 3: Participants frequently mentioned the Importance of recognizing physical limitations and pacing activity accordingly. Relevant comments substantiating this theme include: “I love working in the garden but I hurt like hell, can't bend down, can't lift anything … so if the trees need pruning, I will [do it] just for five minutes and we'll see how we do with that …”; and “I use an egg timer … I don't care how good [I] feel … no … twenty minutes, get up, stretch, walk around, do something else.”

Theme 4: Participants also appreciated the effectiveness of Goal setting for increasing motivation and activity: “I learned I need to make an agenda for the next day, to make a list of the things I want to accomplish”; “Structures are important … also when you set something up, you set up a date with someone, then you have that motivation.” Participants thus reaffirmed the relevance (from the chronic pain patient's perspective) of the Activity, Rest, and Pacing module and the interactive Goal Setting/Calendar feature.

Beyond confirmation of planned content, two additional dimensions of the chronic pain experience emerged that warrant attention by those developing treatments for this population. Theme 5: Participants stressed the need to Accept the loss of their former (pre-pain) identity. The following text passages are illustrative: “Along with the pain and not being able to do things comes a lot of emotional baggage … you feel like you are not needed anymore”; “What frightens me is the fact that, like you were saying, to have to depend on someone”; “The fact that I'm not working now drives me crazy because I always worked, you know, and that's a lot of stress for me”; “I'm seeing a therapist once a week … I have to learn to live with my disability. I've had it for 20 years and even after 20 years I can't quite adjust to it because I was always a very active person, loved sports, worked, played hard. [I have to] adjust to the fact that I'm going to be disabled for the rest of my life … and create a [new] life for myself.” Whether it is a feeling of uselessness, fear of dependence, longing for meaningful/lucrative work, or missing the active life prior to chronic pain diagnosis, acceptance of the lost or altered identity appeared to be essential to moving on.

Theme 6: Lastly, a Desire for a community of peers with whom to address feelings of isolation and to share strategies emerged repeatedly across the four focus group discussions. Some participants were very direct: “People want to talk, they want to talk about their pain, you know? I think it would be good if there was some kind of mechanism where people could talk with experts, and people could talk with other people who are in the same situation”; “When you hear other people sharing their stories, it motivates you one way or another because you are like wow, I am not the only person in the world that feels like that.” Others were less direct in expression of this theme, yet their behavior during groups revealed a desire to share lived experiences and “homegrown” self-management techniques with others living with chronic pain. Across each of the four sessions, participants intermittently shared strategies to manage pain with one another as opportunities arose. Reinforcing this affiliation theme, it appeared that the groups themselves proved therapeutic for most of the participants. In fact, it was the facilitators' (MA, SM, AR) experience that if we had not intervened with focused questions, these groups would likely have had a lively conversation about pain, strategies for managing pain, medication regimens, and life in general. In addition, after the focus groups, some participants spontaneously asked each other for contact information and others expressed how helpful they found talking about pain management strategies with peers.

The six themes referenced above were substantiated by evidence emerging from all four focus groups. However, unanticipated insights from individual focus group sessions also helped shape the content and tone of the web-based program. One of the biggest challenges for web-based programs is sustaining adherence and decreasing user dropout . Thus, learning from participants how to harness and maintain their motivation to complete the program was essential. For example, while an interactive goal setting and planning module had been identified for inclusion in the program package prior to the conduct of focus groups, these interactive features changed in a very significant way after focus group feedback. The original plan was for users to be able to indicate the number of plans they accomplished or did not accomplish toward reaching goals they set for themselves weekly, and in the longer term. However, after the second focus group, we learned that users felt a third category—plans not accomplished due to pain—was needed. One man clarified: “If you're not including what your pain level is, it's not a real base [i.e., sensitive to the day-to-day reality of the person living with chronic pain] because people that don't have pain don't have that component to think about.”

In the last of the four focus groups, participants had the opportunity to hear planned narration for both the introductory and closing modules. These sections had been written with a congratulatory tone, crafted to increase people's motivation to login and make progress through the modules. The feedback from participants was unanimous, well represented by the following: “To me, it just seems ludicrous … that congratulatory thing—cut it. That's what I'd do. It's almost insulting, you know?” Therefore, we modified the tone from being “congratulatory” to more of one of positive reinforcement and encouragement. As a result of eliciting patient input early in the development process, the core interactive feature of the program, as well as the tone, was tailored to the needs and perspectives of people in pain.

Individual Feedback Sessions

Individual session scores indicated that participants were able to make significant knowledge gains. The mean number of correctly answered items on the knowledge pre- and posttests was 1.49 (standard deviation [SD] = 0.90) and 2.41 (SD = 0.74), respectively [t(43) = −7.87, P < 0.001]. Participants correctly answered an average of 55% of knowledge test items before module access and 89% after reviewing the program sections.

In addition to significant knowledge gains, participants rated the program sections positively. As shown in Table , most of the responses to the 12 VAS items on the feedback session survey instrument fell between 80 and 100, indicating that participants found the modules to be “very interesting”; “useful”; “easy to use”; “understandable”; “likeable”; “applicable to chronic pain patients treated with opioids”; and “useful as part of treatment for chronic pain patients who are taking opioid medications.” The remaining scale scores (e.g., “new information,” “applicable to your life,” “comparable to other information or treatment on this topic,” “helpful [in terms of] change[ing] behavior”) fell between 70 and 80, with the exception of one reverse-coded item that probed whether participants found the modules threatening. This item had a mean score of 14 (SD = 14.28), indicating the modules were nonthreatening.

Discussion

The development of our web-based intervention greatly benefitted from including individuals living with chronic pain in the development process. The following are noteworthy findings that warrant discussion. First, planned module content was affirmed. After the conduct of the four focus groups, no previously planned content was excluded based on participant input. One of the four most frequently referenced themes regarding planned content was ambivalence about opioid treatment, suggestive of a need for greater education about opioids in the chronic pain population. This theme dovetails with the call for a cultural transformation in the way pain is viewed and treated that was issued by the Institute of Medicine (IOM) in a 2010 report . Pointing to the “conundrum of opioids,” the IOM committee wrote, “The committee recognizes the serious problem of diversion and abuse of opioid drugs, as well as questions about their long-term usefulness. However, the committee believes that when opioids are used as prescribed and appropriately monitored, they can be safe and effective …” p. 3.

The IOM also emphasized that “chronic pain can be a disease in itself,” with “significant psychological and cognitive correlates” . Participants in the focus groups grappled with the reciprocal relationships among cognitions, mood, and pain. There is a clear need for increased education about the nature of these relationships and how this knowledge can be harnessed to reduce distress and potentially reduce pain severity.

In a recent survey by Howe and colleagues of patients with chronic noncancer pain (CNCP) receiving long-term opioid therapy who perceived opioids to be helpful in relieving their pain, 43% of respondents found opioids helpful; however, they also reported a desire to stop or cut down their use. Half of those who wanted to stop or cut down were depressed compared with one third of those who did not want to cut down or stop. Also, depression was strongly linked with patient-reported opioid-related psychosocial problems and concerns about opioid control. These associations resonate with the two themes of ambivalence about opioids and reciprocal relationships between cognitions, mood, and pain, suggesting that if chronic pain patients can learn to more effectively manage their emotions and cognitions about pain, their ambivalence about opioid treatment may also potentially be reduced. Howe and colleagues suggested that eliciting psychosocial problems that patients deem to be a function of opioid use, and concerns related to opioid use, during clinical encounters may facilitate discussion of patient ambivalence about long-term use of opioid medications. For those who think they may want to quit and are misusing opioid medication, this type of discussion may create an opening for a conversation about discontinuing opioids. The transtheoretical model of change may be a useful framework for conversations like these given research demonstrating that patient readiness to adopt new beliefs and coping responses to pain may predict response to cognitive-behavioral pain treatments that emphasize changes in beliefs and coping behaviors . Thus, monitoring ambivalence among patients with ADRBs seems particularly warranted. The themes affirming planned content facilitated the development process by providing necessary feedback that the program was on the right track, but also highlighted some ongoing issues in pain management more generally.

In addition to affirming planned content, focus group participants also raised an important feature for future web-based tools for people living with chronic pain. Text passages supporting the theme of peer affiliation (a desire for a community of peers with whom to share strategies for managing daily life) were pervasive, as were intermittently shared strategies to manage pain with one another as opportunities arose during group sessions. The mere process of bringing people with pain together in the focus group format seemed to prove therapeutic for many to the extent that they were able to share survivor stories, as has been documented in previous research . Given budget and feasibility constraints, developing a web-based program that enables users to connect with others was not feasible for this project. However, this finding has strong face validity, given the isolation experienced by so many living with chronic pain, and provides direction for a potentially potent ingredient for future program packages.

The patient input gathered in this study demonstrates the potential value of self-management for chronic pain patients as well as the potential acceptability of web-based delivery of intervention content. Focus group and feedback session methodologies highlight the usefulness of including potential program users in the process of intervention development. Also, feedback session data demonstrate the promise and potential effectiveness of such an approach given the statistically significant increases in participant knowledge between pre- and postsession module reviews, as well as the overall positive assessment of program acceptability, likability, usefulness, and so forth.

The data presented herein contribute to a greater understanding of the benefit web-based interventions designed for patients with CNCP may provide when used as adjuncts to pharmacotherapy. In addition, our translation of an evidence-based intervention into electronic format included many steps (e.g., expert consultation, beta testing) in an effort to establish a high level of validation. Attending to the needs and perspectives of people in pain through the conduct of focus groups and individual feedback sessions played an essential role in this process. The intervention was developed by attending to user needs, as opposed to responding to a technological innovation, potentially making this tool more effective in real-world settings.

Acknowledging these strengths, there are some limitations to these efforts. Although the small sample size is appropriate for our methodology and yielded data that enriched our intervention, it is possible that we were not able to capture as many perspectives on program dimensions as we would have had we conducted more focus groups . Also, we cannot rule out the possibility of self-selection bias. Those who declined participation may have had more negative experiences with either web-based or cognitive-behavioral interventions, or may have been in greater distress due to pain. Thus, we may have sampled patients who were more comfortable with computers and psychological approaches to the treatment of pain, and in less distress, which would limit the transferability of the findings. A third limitation was our inability to incorporate all themes into our web-based intervention, especially the desire for connection with supportive peers. The budgetary and logistical difficulties involved in maintaining program user confidentiality while also providing a safe, monitored forum for peer interaction was beyond the scope of our current project. We did include a link on the homepage to resources like the American Chronic Pain Association as a potential avenue for patients to pursue to connect with peers. However, only future research may indicate how effective this aspect of a behavioral intervention might be for patients with CNCP.

In sum, people living with chronic pain—potential end-users—seemed genuinely appreciative of the opportunity to participate in the development process for a behaviorally based pain management tool to complement opioid and other therapies. The results suggest the potential value of self-management for chronic pain patients and the potential acceptability of web-based delivery of intervention content. Focus group and feedback methodologies highlight the usefulness of including potential program users in intervention development.

Acknowledgments

Research funded by US National Institute on Drug Abuse (NIDA), National Institutes of Health (NIH)- 1R01DA026887. The authors would like to thank Drs. Ricardo Cruciani and Russell Portenoy for their expert input into the development of the web-based program, as well as their feedback on this manuscript.

Footnotes

  • Disclosures: Nothing to disclose in relation to the contents of this paper.

References

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