Patient and staff perspectives on pain treatment experiences in a community clinic serving under-resourced older adults

ABSTRACT

Aims

Chronic pain affects up to 37.8% of older adults with higher prevalence among those in under-resourced communities. While there are many treatments for chronic pain, there are complexities to treating under-resourced older adults in community clinics, including multimorbidity, barriers to treatment access, and varying degrees of openness to different treatment approaches. Understanding patient and clinic staff perceptions of treatment options for chronic pain is critical for implementing treatment approaches that will work sustainably in the community. This study aimed to understand clinic staff and patients’ perspectives on chronic pain treatment experiences.

Methods

Focus groups and individual interviews were analyzed using a hybrid inductive-deductive approach.

Results

Themes are: (1) Limited patient and clinic resources and availability affecting pain treatment experiences (e.g., copays, transportation challenges, and conflicting responsibilities), (2) Discrepancies in patient and staff approaches to treatment and the importance of trialing different pain management techniques to alleviate pain (e.g., trialing multiple treatments with varied success), and (3) Conflict between patients’ desire for pain elimination vs. staffs’ focus on symptom reduction and function (e.g., patient-staff disconnect).

Conclusions

These findings are important for determining how treatments can best fit the needs of under-resourced older adults with chronic pain.

1. Introduction

Chronic pain affects up to 37.8% of older adults [1] and rates drastically increase among those in under-resourced and underrepresented communities [2]. Among under-resourced older adults, chronic pain is associated with multiple indicators of adverse mental and physical health outcomes, including anxiety, depression, social isolation, sleep impairment, sedentarism, and impairments in balance and gait [3–6]. Chronic pain is often complicated to treat for older adults, given its multifaceted nature with pain at multiple sites alongside the presence of multiple comorbidities [7]. Chronic pain can be more challenging to treat in under-resourced communities, as these populations often have lower health literacy which can impact pain management [8,9]. Pain medications are less commonly used in under-resourced communities due to limited access [10,11], but even when medications are accessible, this approach is not ideal in older adults as side effects can be worse and multimorbidity can lead to limitations in prescription options [12,13].

Nonpharmacological treatments (e.g., physical therapy, acupuncture, massages, exercise, and mind-body interventions) can be effective alternatives for addressing chronic pain [14–17], but individuals’ experiences, openness, and perceptions of these approaches vary [18,19]. For treatments to be sustained in practice, they must be perceived by patients as having benefits that outweigh costs, and clinic staff and patients need to share a conceptualization of treatment goals and processes [20]. Understanding patient and clinic staff perceptions of treatment options for chronic pain is thus critical for prioritizing treatment approaches that will work sustainably in community clinics where treatments are implemented. Prioritizing treatments to fit the needs of the population is particularly important for under-resourced older adults, as they often report poorer healthcare experiences across all domains of care (e.g., access, communication, delivery, provider satisfaction) [21].

Existing research suggests that older adults with chronic pain and their clinical staff may differ in their perceptions of the goals of chronic pain treatments. Patients with chronic pain tend to prefer curative approaches [20,22] and can subsequently feel discouraged when treatments fall short of this goal [20]. Clinic staff report difficulty with finding biomedical cures for pain and express a desire for patients to learn to embrace self-management approaches [23]. Discrepancies in treatment perceptions and expectations can contribute to a disconnect between patients and staff, as patients can report feeling rushed, misunderstood, dismissed, or invalidated [24,25], while staff express that they feel powerless to achieve older adults’ desired pain reduction [26]. To date, much of the data gathered on chronic pain treatments among older adults has focused on relatively affluent populations and clinics. Little is known about the perspectives of staff and older adults with chronic pain from under-resourced communities, who may face unique barriers to treatment access and engagement, including financial barriers and limited staff resources [7,27].

Qualitative methods can be useful tools for understanding the lived experience of older adults and staff in under-resourced communities. Qualitative assessments provide in-depth information about how staff and older adult patients live with existing treatment options, including their openness to different treatment avenues and perspectives on barriers to care [24,28]. Additionally, qualitative assessments provide rich information about how patients and staff plan care for the future [29]. Such information can aid in developing interventions that best fit the needs of a population and promote sustainable, long-term care. Qualitative assessments can also generate information on improving the delivery and implementation of treatments tailored to under-resourced older adult patients who have historically had limited access to care and limited involvement in pain treatment research.

The present study sought to qualitatively describe the treatment experiences of older adult patients with chronic pain and clinic staff in a community clinic providing care for them to better inform effective chronic pain treatment interventions in under-resourced communities.

2. Methods

2.1. Study overview

This was a secondary data analysis from a qualitative study that utilized focus groups and individual interviews to understand the needs and experiences of under-resourced older adults with chronic pain in an urban community clinic. Information was gathered on the influences of pain in this population at the individual, interpersonal, community, and societal levels, their prior treatment experiences, and their feedback on an evidencebased mind-body activity intervention, including barriers and facilitators to treatment engagement. Data were used to inform the adaptation of a mind-body activity intervention for this setting. For full details of materials and methods, please see McDermott et al. [30]. The present analyses explored clinic staff and patients’ perspectives on prior chronic pain treatment experiences. We conducted 4 focus groups and 2 individual interviews with clinic staff (n = 25) and 3 focus groups and 7 individual interviews (n = 18) with older under-resourced adults (age 55+) with chronic pain at a specific urban community clinic. We used the Criteria for Reporting Qualitative Research [COREQ; [31]] for conducting qualitative data collection and analysis. Quantitative methods were not suitable for this study because we sought to gather direct and in-depth thoughts and experiences from patients and clinic staff to develop a treatment intervention specific to the clinic [32]. The Mass General Brigham Institutional Review Board approved all study procedures and determined this study exempt from written informed consent.

2.2. Participants

2.2.1. Clinic staff

Clinic staff were recruited using purposive sampling, with the assistance of the medical director, administrative staff, and clinic “champions.” Staff included primary care physicians, nurse practitioners, and physical therapists to capture a range of perspectives. Clinic staff were eligible if they were employed in an administrative or clinical role at the community clinic where interviews were held.

2.2.2. Patients

Older adults (55+) with chronic pain were recruited by clinic champions and other clinic staff, as well as through a hospital-wide platform for advertising research studies. Staff who participated in focus groups were encouraged to recruit patient participants. Eligibility criteria for patients included: 1) older adult (55+); 2) self-reported chronic musculoskeletal pain (e.g., pain ≥3 months); 3) Numerical Rating Scale Pain Score ≥ 4; 4) no self-reported cognitive challenges that would interfere with participation (e.g., cognitive impairment or dementia); 5) no self-reported current active, untreated psychotic or substance use disorder that would interfere with participation; 6) self-reported ability to walk for at least 6 minutes including with assistive devices; 7) patient at community clinic; 8) English language fluency. Exclusion criteria included: 1) current serious medical illness that is expected to worsen in the next 6 months (e.g., cancer). Inclusion and exclusion criteria were chosen based on the expected eligibility criteria for the anticipated open-pilot trial for the mind-body activity intervention. We chose 55+ because studies suggest that those in later middle-age who have experienced adverse social determinants of health prematurely develop chronic illnesses and geriatric conditions at earlier chronological ages [33,34]. Research assistants contacted potential participants by phone to introduce the study and obtain verbal consent for participation, per Massachusetts General Hospital IRB protocol.

Only those participating in the study were present for staff and patient qualitative assessments. Participants were made aware of the research purpose prior to participation but did not have a prior relationship with the interviewers.

2.3. Procedure

We developed two semi-structured interview guides, one for staff and one for patients, informed by prior chronic pain literature [30,35]. The guides covered participants’ perceptions of their experience with chronic pain and pain treatment. Patient participants were asked about the helpfulness of pain treatment, what they would consider to be a successful outcome, and which services they would like but are not receiving. Staff participants were asked which treatments they typically use for patients with chronic pain, their perception of patients’ treatment expectations, and what could be done to improve chronic pain care for older adults.

Two PhD-level clinical psychologists (female: KM, male: JG) and one master’s level research assistant trained by the clinical psychologists (female: ME) conducted the qualitative assessments either in person, by Zoom video calls, or through telephone audio calls. There were no repeat interviews. The PhD-level facilitators had backgrounds in chronic pain and made conscious efforts to remain cognizant of potential biases frequently held toward patients with chronic pain and community-dwelling older adults. One master’s level or bachelor’s level female trained research assistant (RA) took field notes during the interview which were then used in rapid data analysis [36]. The focus groups and interviews lasted 30–60 minutes and were audio recorded, de-identified, and transcribed verbatim.

2.4. Data analysis

De-identified data were stored and coded on the qualitative platform Dedoose (version 9.0.90). Neither data (i.e., transcripts) nor results were returned to participants. We used the Framework Method [37] to guide a hybrid inductive-deductive thematic analysis of our transcripts. We (KM, JG, and two additional PhD-level clinical psychologists) first developed two separate codebooks using a hybrid approach to specify parent codes such as “perception of current treatment” and child codes such as “helpful/preferred treatment (and why)” based deductively on prior research in chronic pain and our interview guide, in combination with inductive information gathered from conducting the interviews and rapid data analysis [36]. We allowed for themes to partially overlap. We met to review and integrate preliminary codes into a single codebook, and each team member reviewed a transcript to inform further edits to the codebook.

Two trained RAs then independently coded 20% of the transcripts. They met with two PhD-level clinical psychologists to discuss any novel, inductive codes they independently generated and to examine coding discrepancies, which were resolved via discussion informed by the codebook. After iteratively refining the codebook, the RAs recoded the 20% of transcripts they initially coded and coded the remaining 80%. The coded excerpts were then extracted from Dedoose and compiled into an Excel document. JB and KM independently and systematically reviewed the excerpts and compiled suggested themes and subthemes using an inductive approach by allowing themes to emerge from the data. JB and KM then met to group independently suggested themes into larger categories. We met weekly to discuss and resolve discrepancies and finalize themes.

3. Results

Patients and staff were mainly White (Patients: 83%, Staff: 84%), non-Hispanic or Latino (Patients: 89%, Staff: 88%), and female (Patients: 67%, Staff: 84%). Patients were mostly employed with part-time work (72%) and either completed a high school (44%) or college degree (39%). At the time of the interviews, staff had an average of 18.84 years of experience. A full table of demographic data and further description of the study sample and procedures are reported elsewhere [30].

We identified three major themes regarding clinic staff and patients’ perspectives on chronic pain treatment experiences: 1) Limited patient and clinic resources and availability affecting pain treatment experiences, 2) Discrepancies in patient and staff approaches to treatment and the importance of trialing different pain management techniques to alleviate pain, and 3) Conflict between patients’ desire for pain elimination vs. staffs’ focus on symptom reduction and function.

3.1. Theme 1: limited patient and clinic resources and availability affecting pain treatment experiences

Patients and staff reported on financial and logistical factors that influenced the patient experience of pain treatment, which we separated into two subthemes.

3.1.1. Financial factors influencing pain treatment experiences

Patients and staff alike highlighted how socioeconomic status and financial hardship influence patients’ experiences with pain treatment. Staff emphasized that the cost of numerous appointments and accompanying copays for patients with chronic pain can limit treatment accessibility. This may be particularly burdensome for treatment techniques that require recurring appointments (e.g., regular acupuncture or psychosocial treatments). Although staff may attempt to take steps to lower or eliminate costs for the patient population, they themselves can be limited by the clinic’s resources, which can preclude long-term maintenance of care:

Copays can be expensive. The copays per visit adds up to quite a lot if they’re doing a series of [visits] like this. – Staff

I haven’t done [acupuncture] anymore because then, as time went by, I could no longer afford it. – Patient

We had some leftover funding, so I was able to send people to acupuncture. They actually really liked it, but it was paid for because again we have a patient population that is really poor. - Staff

3.1.2. Logistical factors influencing pain treatment experiences

Patients and staff commented on a variety of logistical and scheduling barriers that impact patients’ ability to coordinate and engage in various treatments, including the challenge of providing services that fit in the schedules of medical professionals but do not conflict with the working, transportation, and caregiving responsibilities of patients. Staff reported using multiple techniques to overcome these barriers to adherence and engagement, including dedicating significant time and resources to encouraging participants to meaningfully engage with their treatment plan against competing responsibilities:

I think there’s a lot of logistical barriers like everyone’s been saying: transportation, work, childcare, and that kind of thing. – Staff

I think [Doctor’s name] has recommended a few things, but a couple of them I wasn’t able to go to. A couple programs that they had, but I wasn’t able to attend that. No one else has ever reached out to me to do anything else. - Patient

We call them a lot. We remind them of their appointments. We ask them about their barriers, or if they need transportation, we reach out to primary care and try to get them transportation. But it’s challenging, it’s really challenging. – Staff

If childcare is a barrier often times I’ll tell patients it’s okay to bring their child in to treatment. I think we’ve all done that with variable amounts of success. I also just think in general like with chronic pain, it’s just tough to get patients to buy in.” - Staff

3.2. Theme 2: discrepancies in patient and staff approaches to treatment and the importance of trialing different pain management techniques to alleviate pain

Both patients and staff emphasized the importance of trialing different pain management techniques and approaches to alleviate pain. We identified 3 subthemes: 1) prior treatment attempts, 2) cautionary approaches to treatment, and 3) staff flexibility to treatment.

3.2.1. Prior treatment attempts

Many patients reported trying multiple treatments with varying degrees of success, including medications, physical therapy, acupuncture, steroid injections, surgery, exercise, and alternative treatments (e.g., yoga, herbals):

And then the steroids, and then the Lyrica. What else is there? Cymbalta. Many different things that just – methotrexate, all those things we had tried, but I couldn’t take them. - Patient

So I have done nerve blocks, trigger injections, the whole gamut of injections. I have done acupuncture. I have done physical therapy … I’ve added Valium when the pain level gets to be a 9 or a 10, and it completely affects even just getting up. - Patient

Importantly, patients had differing opinions on the effectiveness of each treatment technique. While some patients reported satisfaction with medications, physical therapy, and acupuncture, others did not find these approaches to be helpful in managing their pain:

Medications:

I take the oxycodone, and that does help for the most part. – Patient

I take my medicine. Yeah, the pain will go away for a few – I won’t even say few hours because any emotional thing can open the gate and have the pain back again. – Patient

Physical therapy:

I can’t wait till I get to physical therapy. I know that will help. – Patient

I tried physical therapy numerous times, and it doesn’t help. – Patient

Acupuncture:

I did acupuncture. And that worked for a while, and that helped me a lot in the beginning. That helped a lot. – Patient

They tried that thing you stick the needles in your back … and I didn’t like that either, so, I don’t think nobody’s sticking needles in my back is worth anything either. – Patient

3.2.2. Cautionary approaches to treatment

Patients’ willingness to engage in certain treatment techniques was also dependent on their perception of surgeries and medications, including potential side effects. Some participants felt as though they had exhausted other treatment techniques for their pain but were unwilling to try surgical or pharmacological interventions, contributing to a feeling of hopelessness about finding treatment that adequately treats their pain:

[The pain is] not going to go away unless I get the operation and I’m not going to do that. – Patient

To ease the pain, I really don’t know what to take because I don’t want to take all those pills … - Patient

I think mostly … they sort of fear medication and side effects. - Staff

3.2.3. Staff flexibility with treatment

Staff described a treatment approach that includes flexibility, patience, and pragmatism in response to individual patient’s needs, such as lifestyle, health literacy, and motivation/engagement. When asked about considerations for informing the adaptation of a mind-body activity intervention in the clinic, one clinic staff member noted that they have to think about the impact of high-activity employment on patients’ willingness to engage with the common treatment approach of recommending increasing physical activity to manage chronic pain:

A number of our patients have very physical jobs, so they generally end up being very exhausted, and so additional activity to them seems not necessarily tangible and not necessarily a way to relieve their pain where they take a proactive stance on it … I have a number of barriers trying to redirect people around, ‘If you have fibromyalgia, we actually want you to exercise, but that’s going to make more pain. But that eventually will be okay.’ – Staff

Staff emphasized the importance of meeting participants at their health literacy level, including the need to spend additional time providing education regarding the physiology and treatment of pain to help patients understand the justification for treatment recommendations. Pain education includes “myth-busting,” or challenging patients’ prior beliefs and expectations about their pain trajectory, including that chronic pain will always be debilitating as a result of natural aging:

They feel like the pain and the decreased abilities in terms of movement and stuff like that are part of aging. - Staff

[The patient] was convinced that she was always going to have neck pain, and I think that’s because she’s seen so much of it in her kind of family and culture. And kind of breaking down those cultural bits is important. – Staff

But I think it’s saying it in three or four different ways, approaching it in different ways … So doing the risk-benefit approach to them and kind of weigh those benefits versus pros and cons can sometimes help motivate patients a little bit. - Staff

3.3. Theme 3: conflict between patients’ desire for pain elimination vs. staffs’ focus on symptom reduction and function

The final theme highlighted the disconnect between patient and staff expectations of chronic pain treatment techniques. Patients largely reported seeking a treatment that would eliminate or greatly reduce their pain. They evaluated the effectiveness of a treatment on whether it successfully changed the severity of their pain, as opposed to whether it influenced their physical function:

I had cortisone shots … I’ve had multiple ones, and the only thing is, it makes me numb for that day. The next day, it doesn’t make anything. The pain does not go away… I wish it would. I wish. – Patient

When doctor prescribed me omeprazole twice a day, my pain became easier. But it’s not like it disappeared. – Patient

When treatments did not lead to desired pain reduction, some patients demonstrated resignation that could lead to reductions in physical activity:

Well, I tried exercising, I tried physical therapy numerous times, and it doesn’t help … it makes it worse […] when you become a certain age and you’re in chronic pain, nothing’s going to help it, nothing’s going to backtrack that, it is what it is, you know what I’m saying? … I have osteoarthritis - do you really think that there’s going to be some miracle that’s going to make me pain free? No. Not going to happen. And I came to terms with that and I try to manage the best I can to my ability. I don’t overstep myself where I push myself or force myself to make my pain any worse than what it is. – Patient

And I mean, there’s a subset of the population … they don’t want to have surgery or injections or procedures, and they’re just living with a lot of pain but they’re more kind of limiting their activity and stuff like that. - Staff

Of those who tried various treatments, many expressed frustrations that their pain is being under-treated, and they do not feel heard by the clinic staff:

I’d actually like better pain medicine but… I don’t know… My doctor seems resistant to give me anything stronger than what I’ve been taking. – Patient

I don’t think that they take into consideration the individuality of the clients that they do have. They just lump sum of everybody in a group. Like a herd of cattle, they’re just mowing you in. That’s how I feel. – Patient

By contrast, staff took a different approach to pain management. Staff discussed the importance of letting patients know that managing and treating chronic pain can be a gradual, slow process that requires trialing multiple treatment options. They described difficulty with bridging communication divides with patients. Part of the disconnect was that staff emphasized improving physical function as a key treatment goal, as opposed to solely pain reduction.

So the generational differences, cultural differences, to have them try to contextualize things and realize this is where we are today, isn’t always necessarily going to be like this … We may not get to be pain-free, right, but we can probably improve your function - Staff

We have some patients that have a very kind of all-or-nothing feeling about their pain … they’re expecting that we should be able to make them completely pain free rather than thinking of it as something where they may have good days and bad days and kind of gradually be working on improvement. - Staff

4. Discussion

The present study aimed to understand clinic staff and patients’ perspectives on chronic pain treatment experiences in a clinic that serves an economically diverse, under-resourced community. Through a hybrid deductive-inductive approach, we examined the unique barriers to treatment engagement, patients’ and staffs’ approaches to treatment experiences, and the discrepancies between patients’ and staff treatment expectations. This qualitative research provides information about the lived experience of patients and staff, that is, what motivates patients to engage with various treatment approaches, areas in which patients may need more support to promote sustainable engagement, and areas where communication between patients and staff can be improved. These findings are important for determining how treatments can best fit the needs of under-resourced older adults with chronic pain.

Findings from the first theme highlighted the role of financial and logistical factors impacting treatment engagement, such as interfering with appointment attendance. Patients and staff alike commented on the difficulties of finding time for appointments amidst patients’ competing work, personal, and family responsibilities. Additionally, consistent with prior literature [20], we found that treatment cost is a significant limitation to access and care. The accumulation of multiple financial and logistical barriers can make it especially challenging to find care options that meet patients’ needs [38,39]. In this community clinic, staff described efforts to provide flexible treatment approaches by way of facilitating transportation, covering copays, and inviting family members to attend appointments. While troubleshooting barriers can help patients engage in treatments, offering adaptable and flexible treatments to match patients’ needs requires more time-intensive work, which is not always available in community clinics given the high quantity of appointments each week and limited staffing [40,41].

Themes two and three highlighted the disconnect between patients and staff in their approach to pain management. Patients described variable experiences with existing approaches, as certain treatments that worked for one individual were not perceived to be effective or well-tolerated for others. Some patients expressed trepidation regarding surgeries and medications, consistent with prior literature [42,43], while others perceived they were under-medicated. Tailoring treatments to the needs of an individual patient is crucial for improving pain management engagement and adherence [40,41], and staff described taking a flexible approach to pain treatments by considering patients’ health literacy, lifestyles, and engagement while managing pain. Nevertheless, there appeared to be a core conflict at the center of patient and staff approaches, that is that patients understandably wanted their pain to be eliminated [22], while staff expressed a more measured outcome expectation focused on some pain reduction and improvements in patients’ physical function despite pain. It is notable that despite staff being well aware of this divide and indeed often attempting to bridge it, they still reported difficulty reconciling their and patients’ contrasting approaches to pain treatment. Potential contributing barriers included cultural and generational divides in communication, as well as lower health literacy in this population alongside limited staff resources (especially time) for patient education. Treatments to address health literacy have potential to increase overall engagement and adherence in treatment techniques [44,45]. But as identified in the first theme, patients from this community clinic generally lack the time and financial resources to attend numerous appointments to find a treatment that works well for their pain. Patients may feel pressured to find a treatment that works quickly and effectively to limit the impact of pain on work and caregiving responsibilities [46]. Patients may not feel they have the same luxury of flexibility as staff.

Differing expectations and appraisals of treatment suggest that more needs to be done to bridge the communication disconnect between patients and staff. Better communication has the potential to improve health outcomes by fostering positive and collaborative relationships between patients and staff [47–49]. This research supports the development of brief communication interventions to facilitate patient buy-in for non-curative pain treatments.

It is also possible that the communication disconnect may be the result of the culture surrounding pain management, which goes far beyond an individual provider’s communication style. In particular, providers are encouraged to quickly find a solution to pain, one that is biomedical in nature, and patients are encouraged to think of pain as a problem of the tissues, such as the muscles, bones, and joints [50] rather than as a problem of the nervous system [51]. Multiple mind-body approaches, including pain neuroscience education, Pain Reprocessing Therapy [52], and Cognitive Functional Therapy [50], advocate for an approach in which patients are told from the beginning of their pain treatment journey that pain is a brain disease. In this vein, mind-body treatments can be encouraged from the beginning alongside other approaches to regulate the nervous system, reduce fear of pain, and improve physical function. Providers often lack training in how to deliver pain neuroscience education themselves, and thus their attempts to ameliorate pain actually contribute to patients’ frustrations and the disconnect in expectations. More research is needed to determine how we can encourage learning and communication on both sides of the patient and provider partnership to ensure successful treatment engagement.

The present study has several limitations. Because this analysis was embedded in a larger study, the qualitative script was broad in nature, which limited the depth of information we were able to gather. Additionally, we recruited a small sample size of participants from a single northeastern community clinic and may not reflect views of older patients with chronic pain outside this setting. Nevertheless, our findings dovetail with other research and can serve to supplement existing quantitative studies by providing in-depth information on patients’ and staffs’ lived experiences.

5. Conclusion

We assessed the treatment experiences of under-resourced older adult patients with chronic pain and clinic staff in a community clinic. Key findings highlight the financial and logistical barriers to care for patients in this community setting, as well as variability in perceptions of treatment effectiveness. Further, patients and staff presented different perspectives on treatment goals and expectations, and more intervention may be needed to bridge these communication divides. These findings point to the importance of fully understanding the perspectives of patients and staff from under-resourced communities in order to effectively implement pain treatments in community settings.

Funding Statement

This work was supported by the National Institute on Aging/National Institute of Neurological Disorders and Stroke [1R61AG08103401 to AMV and CR], the National Institute on Aging [3R61AG081034-01S1 to KM], and the National Center for Complementary and Integrative Health [K24AT011760 to AMV, K23AT012789-01 to KM, K23AT01065301A1 to JG].

Article highlights

Introduction

• Chronic pain is widespread, costly, and affects under-resourced older adults in much higher rates.

• Understanding patient and staff perceptions of existing treatment options is critical for developing interventions that fit the needs of older adults with chronic pain in the community.

Methods

• The present study used focus groups and individual interviews with older adult patients and clinic staff members to explore perspectives on chronic pain treatment experiences.

• This study used a hybrid inductive-deductive thematic analysis.

Results

• We identified three themes about staff and patients’ perspectives on pain treatments:

  1. 1) Limited patient and clinic resources and availability affecting pain treatment experiences.

  2. 2) Discrepancies in patient and staff approaches to treatment and the importance of trialing different pain management techniques to alleviate pain.

  3. 3) Conflict between patients’ desire for pain elimination vs. staff’ focus on symptom reduction and function.

Discussion

• Clinic staff and patients highlighted numerous logistical and financial barriers to treatment engagement.

• Patients trialed many treatment options with varying effects.

• Patients and staff reported conflicting approaches to and expectations of pain treatments (e.g., patients seek pain elimination, staff seek pain reduction and improved function).

• Results highlight the need for improvement in communication between clinic staff and patients focusing on encouraging shared goals for treatment.

Disclosure statement

The authors have no 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. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Ethical declaration

This work was conducted with approval of the Mass General Brigham Institutional Review Board (IRB #: 2022P001691). The Mass General Brigham Institutional Review Board approved all study procedures and determined this study exempt from written informed consent. Research assistants contacted potential participants by phone to introduce the study and obtain verbal consent for participation, per Massachusetts General Hospital IRB protocol.

Author contributions

Julie Brewer: Writing – Original draft, Formal analysis

Katherine McDermott: Writing – Original draft, Formal analysis, Project administration

Jonathan Greenberg: Writing – Review & editing, Project administration

Alexander Presciutti: Data curation, Writing – Review & editing

Danielle LaCamera: Writing – Review & editing

Christine Ritchie: Funding acquisition, Writing – Review, Methodology

Ana-Maria Vranceanu: Funding acquisition, Writing – Review & editing, Supervision, Investigation, Conceptualization, Methodology

Data Accessibility statement

Our qualitative study was not pre-registered. The analysis plan of this manuscript was not formally pre-registered. De-identified data from this study are available in the Vivli data repository. There is no analytic code associated with this qualitative study. The interview is available in the supplementary material for this manuscript.

Data sharing statement

Our data is available as cited in the main analysis (McDermott et al., 2023) [30].