Patient and Clinician Perspectives on Chronic Pain Communication in Advanced Kidney Disease

Abstract

Background:

Chronic pain is highly prevalent among older adults with advanced chronic kidney disease (CKD stage 4, stage 5, and end-stage kidney disease (ESKD]). Yet, pain management involves a delicate balance between alleviating symptoms and avoiding harm related to impaired renal drug clearance and the high risk of medication side effects. Because little is known about how patients and clinicians navigate these complex pain management conversations, we examined patient and provider perspectives on communication and decision making in chronic pain and advanced kidney disease.

Methods:

We conducted a qualitative study using semi-structured interviews based on the Ottawa Decision Support Framework. Participants included older adults (age ≥ 65) with both advanced CKD and chronic pain lasting ≥ 3 months and physicians and advanced practice providers from primary care, geriatrics, nephrology, and palliative care. We used thematic analysis to summarize major themes on communication and decision making.

Results:

We interviewed 48 participants, including 24 older adults with advanced kidney disease and chronic pain and 24 clinicians, with 6 clinicians from each specialty. Three major themes about barriers to effective communication emerged: 1) Treatment complexity and uncertainty; 2) Fragmentation of care across specialties and the care team; and 3) Divergent treatment preferences between patients and clinicians. Communication strategies to overcome these barriers included: open communication, multidisciplinary care team collaboration, patient advocacy, and relationship- and values-centered decision making.

Conclusions:

This study highlighted key barriers and potential communication strategies among older adults with chronic pain and advanced kidney disease. These findings can inform the development of targeted interventions that support patients and clinicians in navigating these complex conversations and decisions.

Introduction

Over half of older adults with advanced chronic kidney disease (CKD stage 4, 5, or end-stage kidney disease (ESKD)) have chronic pain that impairs their quality of life, physical function, and independence.^1–3 A known consequence of advanced CKD is reduced renal drug clearance and increased risk of toxic metabolite accumulation of pain medications, such as opioids and gabapentinoids.^4,5 Therefore, treatment with these medications comes at the risk of worsening delirium, hospitalizations, and mortality.^6–9 Evidence to guide non-pharmacological and pharmacological pain treatments in this population is limited, which leaves shared decision making between clinicians and patients regarding treatment risks, benefits, and alternatives inadequately informed.

For older adults, treatment decisions need to balance alleviating chronic pain and avoiding harm. Clarifying these priorities requires effective communication between patients and clinicians. However, communication challenges hinder care in chronic pain. Patients with chronic pain report feelings of distrust, feeling misunderstood, or perceiving stigma, all of which may negatively affect patient-clinician communication about pain management.^10–13 Limited visit times, competing non-pain medical priorities, and concerns of opioid misuse impact how clinicians discuss pain management options, risks, and benefits with patients.¹⁴ These challenges are amplified in older adults with advanced CKD due to the added risks and differing priorities that influence how they understand and weigh treatment options.^15–17 Despite these challenges, little is known about older adults and clinician perceptions about communication and decision making regarding pain management in advanced CKD.

In this qualitative study, we examined how clinicians and older adults with advanced CKD navigate conversations about chronic pain management. We used thematic analysis to identify communication barriers and potential strategies to support these complex conversations.

Methods

Study Design and Setting

This qualitative descriptive study consisted of individual semi-structured interviews with patients and clinicians at one tertiary health system between January and June 2024. The Duke Institutional Review Board approved the study (Pro00113257). We reported the study according to the Consolidated Criteria for Reporting Qualitative Studies checklist¹⁸ and used NVivo software (Lumivero, version 14) for the analysis.

Participants

We first identified a population of older adults likely to have CKD and chronic pain using the electronic health record (EHR) with the following inclusion criteria: 1) age 65 years or older; 2) at least 2 estimated glomerular filtration rate (eGFR) less than 30 ml/min/1.73 m² separated by at least 90 days in the past year to identify CKD stage 4 or above¹⁹; 3) at least two EHR numerical pain scores of 4 or higher, or outpatient opioid prescription (for example, morphine, oxycodone, hydromorphone) in the past year to identify patients with chronic pain²⁰; and 4) able to communicate in English. To capture as large a population as possible, we extended eGFR and numerical pain score criteria to the last two years. To confirm a history of chronic pain, we then screened patients by telephone with the Pain intensity, Enjoyment of life, and interference with General activity (PEG) scale and pain lasting more than 3 months.²¹ We selected a PEG cutoff of 5 or higher to identify participants with moderate or severe pain, a group more likely to seek and discuss pharmacological or non-pharmacological treatments.^22,23 To capture potential differences in how disease severity shapes understanding of the role of CKD and treatment options, we intentionally included patients on and not on dialysis.

Practicing clinicians (physicians and advanced practice providers (APPs)) were identified through departmental email listservs and purposive sampling. We included APPs and physician trainees as they have independent prescription authority and can prescribe controlled substances in North Carolina. We aimed to recruit 6 participants from each of 4 specialties (primary care, geriatrics, nephrology, and palliative care (n=24 total), focusing on specialists who frequently interact with older adults with advanced CKD. The choice of 6 respondents per clinician specialty was based on the high information power in this respondent group.²⁴

Interview Guide

The semi-structured interview guide was adapted from the Ottawa Decision Support Framework (ODSF) and developed with input from experts in qualitative analysis (JS, KS), chronic pain (ALC, KAL), geriatrics (CBB), palliative care (JEM, KS, KAL), and a patient with lived experience (LM).²⁵ LM provided feedback on the overall study aims, interview guide, recruitment materials, burden of the study, and time required to participate.

The ODSF was chosen due to its wide application across many clinical areas, including in pain management.^26,27 The three key domains in the ODSF include (1) Decisional needs, (2) Decision support, and (3) Decisional outcomes. Decisional needs are deficits that impact quality of a decision and require decision support, such as unrealistic expectations or inadequate knowledge. Decision support is an intervention that improves decision quality. Decisional outcomes refer to a decision’s effect, including decision-making quality and process.²⁵ Based on initial interviews with 3 patients and 4 clinicians, we revised the interview guide to include additional probes and enhance question clarity (Supplemental File S1: Interview Guide).

Data Collection and Analysis

All participants gave verbal consent and received $50 compensation for their participation. Two female team members with qualitative experience (JEM, physician; TL, research program leader) led data collection via phone or Zoom. TL conducted one-time patient interviews and did not have any prior relationship with participants. JEM conducted one-time clinician interviews. At the time of the interviews, JEM had professional relationships with 10 clinician participants without any supervisory role. Participant interviews focused on lived experience and clinician interviews addressed clinical expertise. At the start of each interview, JEM and TL identified themselves, their professional roles, and the study aims. Participants answered a brief demographic survey after the interview.

Interviews were audio recorded, transcribed, and reviewed. Participants did not review transcripts or provide feedback on findings. The analysis team (JEM, EU, SQ, JG, DP, and JS with qualitative expertise) used a deductive and inductive approach to develop the codebook. Four interviews (two patient interviews and two clinician interviews) were randomly selected and coded independently by the analysis team, and differences in coding were discussed during team meetings. Through discussion, the analysis team reached agreement, characterized by over 90% similarity of coding. When consensus was met after four interviews, the remaining transcripts were divided and coded individually. Regular team meetings were convened to discuss codes grouped in overarching themes, deliberate discrepancies, and adapt the codebook as necessary. This process reflects suggested practices for achieving rigorous qualitative alignment without the use of inter-rater reliability.^28,29 Through team meetings and using thematic analysis, themes emerged regarding communication in chronic pain management.^30,31 We reached data saturation as no new themes appeared in the analysis of final interviews.

Results

Of the 83 patients identified through EHR screening, 27 met full inclusion criteria and 26 consented to participate. One patient withdrew after consent, and another was excluded after unsuccessful call attempts, resulting in 24 interviews. Twenty-four clinicians consented and completed interviews, including 6 geriatrics, 6 primary care, 6 nephrology, and 6 palliative care clinicians (Table 1). Interviews averaged 27.5 (range 13.8 – 92.2) minutes. Figure 1 outlines codes, themes, and communication strategies.

Table 1:

Patient and Clinician Demographics

Characteristics1	N (%)2
Patients
Age (mean, SD)3	73.0 (5.4)
Sex
Female	15 (62.5)
Male	9 (37.5)
Race
Black	11 (45.8)
White	11(45.8)
Other	2 (8.4)
Outpatient Opioid Therapy4	5 (20.8)
Dialysis	12 (50.0)
Clinicians
Sex
Female	18 (75.0)
Male	6 (25.0)
Race
Black	2 (8.3)
White	16 (66.7)
Other	6 (25.0)
Training
Physician	19 (79.2)
Physician Trainee	1 (4.2)
Advanced Practice Provider	4 (16.7)
Years in Practice Since Completion of Terminal Training, Median (IQR)	9 (5 – 16)

¹Self-reported, unless otherwise noted

²N (%), unless otherwise noted

³From date of consent

⁴Opioid listed on outpatient medication list in the electronic health record

Figure 1:

Flowchart of codes, themes, and strategies

Theme 1: Treatment complexity and uncertainty

Challenges

Clinicians described a structured, formulaic approach to general chronic pain management, by assessing the pain’s type and etiology and reviewing current and prior therapies. However, when treating older adults with advanced CKD, clinicians weighed multiple, sometimes competing factors in developing treatment plans. These factors included: medication types and safe doses for patients with CKD, potential side effects, addiction risk, polypharmacy, insurance coverage, cognitive ability connected to medication regimen adherence, and access to transportation for physical or behavioral therapy. Clinicians described a “barrier of knowledge” due to the absence of formal training in managing chronic pain in the context of CKD. Without structured education, one clinician relied on “self-learning over the years” and described their experience as “trial by fire” (Clinician 2). This gap in formal training, combined with the complexity of decision making, made it difficult for clinicians to clearly communicate treatment options and the uncertainties involved to patients. As one clinician noted, “It’s complicated and there’s so many things…it’s very easy for patients to get overwhelmed.” (Clinician 18)

Although most patients acknowledged their medications were limited by advanced CKD, few described the range of complex factors contributing to pain treatment plans. However, patients expressed frustration when providers failed to communicate a clear plan for managing their chronic pain. Sources of frustration included waiting for “lab work,” “see[ing] another doctor,” or transferring to another institution. This limited communication by clinicians around treatment options or rationale for next steps left patients feeling their pain was unaddressed and that there was no clear path forward.

Potential Strategy

When approaching complexity, patients benefited from open communication tailored to their health literacy and current understanding (Table 2A).

“[Clinicians] should communicate with honesty. It can… be a brutal experience. It can be a life altering experience… They should communicate very clearly that there are things [that] can be done to manage the pain but unless they can find why the pain is being generated, then it could very well be a long issue for the individual.”

(Patient 17)

Table 2:

Communication Strategies for Chronic Pain Management in Advanced Kidney Disease

Communication Strategy	Clinician Examples	Patient Examples
A: Open Communication	Speaking directly and simply in a straightforward manner Clearly articulating thought processes and reasoning with attention to patient health literacy Sharing expectations of treatment management Stating explicit reasons for referral and the need for specialist involvement	Letting the clinician know the information needed to feel informed and confident to make decisions Feeling safe to be transparent about the impact of chronic pain, views on treatments, concerns related to chronic pain and stigma
B: Care Team Approach (inclusive of patient, primary and specialty clinicians, and family and care partners)	Developing direct communication pathways to improve clinician-to-clinician coordination for complex pain management Identifying and involving the care team in shared decision making to support chronic pain management Including family or care partners in decision making when appropriate	Clarifying how the patient’s and/or family or care partners can be active member(s) of the care team Asking about and clarifying the roles of their providers Engaging a family member or care partner in conversations, especially when discussing complex treatment options
C: Patient advocacy	Teaching patients how to advocate for themselves, such as emphasizing questions to ask during appointments	Following up with the clinician, through the electronic health record portal or other clinic communication avenues as needed Preparing a list of questions and talking points prior to the visit Speaking up during and after the visit if explanations or treatment plans are unclear
D: Relationship- and Values-Centered Decision Making	Listening attentively and ensuring the patient feels heard without judgment Asking about patient goals and values and identifying treatments that align with those goals Using motivational interviewing to support patient-centered decision making Sharing and setting mutual expectations for chronic pain management	Sharing goals and values related to chronic pain management that are important to their quality of life Working collaboratively with clinicians to develop a personalized treatment plan

In addition to communicating treatment options clearly, clinicians should be transparent about the limitations in advanced CKD. These open conversations helped patients better understand clinicians’ reasoning behind their pain management plan.

“I sort of tell [patients] that… all of us take on risk in our daily lives, when you go and drive a car, for instance, and occasionally you run a stop light and sometimes you speed. There are occasions that you have to do that, maybe you’re rushing to get home….So that’s sort of the analogy I give… in your situation with your kidneys, it is a little more risky but it might not be that risky. It’s not like you’re going 150 on the 30 or something, but maybe just a little bit and maybe in the same range… we typically go about a normal day and the risks we take and the decisions we make, but the alternative is to live with a lot of pain.”

(Clinician 1)

Theme 2: Fragmented care across specialties and the care team

Challenges

Faced with complexity and uncertainty over the best course of action, clinicians referred patients to specialists for support in managing chronic pain. Yet, these referrals led to what several clinicians described as “fragmentation of care” or lack of cohesive communication or coordination between clinicians. This fragmentation was particularly problematic when providers offered divergent recommendations, leaving patients unsure which treatment option was most appropriate for them. In some cases, differing recommendations were harmful. One clinician noted how clinicians who do not regularly manage patients with CKD occasionally ordered “dangerous things for patients with CKD.” (Clinician 2) This was especially challenging for patients with advanced CKD and multiple comorbidities.

“It’s just hard to communicate with the patient and…they end up seeing lots of different people like an orthopedist and a pain doctor and a neurologist and everybody’s throwing different things at them and they come back to see me and they’re like I’m still in pain but they’ve seen all these other people. So that makes it harder for me cause I feel like I might be recommending things they’re not recommending. So sometimes I feel like… there’s kind of fractured care there, which makes it hard.”

(Clinician 2)

Patients described the lack of communication and coordination from multi-specialty teams, without a single provider overseeing the actions and communication between specialists. This led to communication challenges, such as repeating questions to different specialists and having issues get lost across their multiple clinicians. As one patient described:

“So I would say that’s a little frustrating and confusing and trying to find a continuum [of] care…. I would say there’s not a consistent thread it seems… in terms of talking about pain and then pain management… So then it could get confusing because you ask them and say well then should I cross reference another physician that I have to make sure this is okay to take because the kidney failure or do I need to go back [to] the docs addressing the sarcoid and so forth and so on… but it seems like there’s no one person overlooking everything and you as a patient are left to try and filter out and make sense out of everything that’s kind of been tossed onto your plate so to speak and I find that frustrating and I find that difficult to try and navigate.”

(Patient 16)

Potential Strategies

Patients and clinicians described team-based approaches to address communication challenges across specialties. Direct communication pathways between specialists may decrease missed communication and improve overall pain management. This includes access to palliative care specialists via chat or a palliative care specialist embedded within a primary or nephrology clinic (see Table 2B for additional strategies). Specialist collaboration determined the most appropriate treatment:

“I have a patient that had this intractable shoulder pain and she’s a bit older… but I had a kind of discussion with her orthopedic surgeon and we decided collectively that surgery was really the best option for her and she’s in her mid-70’s but she’s a really active, really vibrant 70 year old and it was so incapacitating like she just was losing her ability to like care for herself.”

(Clinician 21)

One patient described effective communication between their care team.

“I must say my doctors do, my care team as I call them, do communicate with each other…. My primary care. He follows what’s going on with my cardiologist…My hematologist follows what’s going on with my nephrologist. So, I just feel like my care team communicates very well with each other.”

(Patient 8)

Lastly, advocacy may bridge communication when care is fragmented (Table 2C). Explicit and inclusive communication between patients and their care teams can facilitate complex multi-specialty care. Some patients naturally advocated for themselves. One patient shared how they will “reach out if [the doctor] never reach[es] out,” (Patient 9) while another created a list of questions for short appointment visits. One clinician described how their clinic has “a lot of [patient] education about advocating for themselves” because:

“Patients don’t know what they’re taking and why, they just have sometimes a very general sense. I’m like, you need to know and you need to ask every doctor, particularly, …. how is this medicine going to affect my kidney.”

(Clinician 18)

Theme 3: Divergent treatment preferences between patients and clinicians

Challenges

Patient preferences that differ from clinician recommendations further strain patient-provider communication. Conflicts may arise from patient reluctance to reduce or discontinue a medication, to start a treatment with potential side effects, or from limited options to manage their chronic pain. They also stem from differing perceptions of the benefits and risks towards medications, such as opioids, and non-pharmacologic treatments, such as acupuncture.

“I have nieces and nephews that got hooked on that[oxycodone]… I did take that and that did help me with my back but right now with that I’m scared to take that because of my kidney right now… I don’t want to take nothing that’s really going to put me down…I try to go no, no further than Tylenol….Because I’m afraid of the other one and I don’t want to go through that hallucinating and have my husband scared.”

(Patient 24)

Potential Strategies

Relationship-centered strategies supported communication amid treatment disagreements (Table 2D).Clinicians and patients described strategies aimed at ensuring patients felt respected and heard, using empathic language, and fostering trust. Two patients emphasized the importance of engaging directly with clinicians through focused, face-to-face conversations. Conversely, one patient described the consequences of not feeling heard and feeling dismissed about their chronic pain:

“I don’t know how I would want that conversation to go…When I had this pain severely, I talked to her about it. She didn’t feel like it was a problem for me. So, I don’t even discuss it with her anymore. That’s why I went to urgent care. That was what started me going, taking the time to go to urgent care.”

(Patient 7)

When treatment preferences differed, focusing on both patient and clinician goals helped bridge gaps and set mutual expectations. These value-driven conversations could also include family members or care partners to address chronic pain concerns at home. This approach acknowledged differences and supported collaborative decision making.

“I think it helps to have them reflect on… what are the things that are most important to them to be able to do, like what brings meaning to their life, what activities are really important to them and just to reflect on what they’re… able to do as a result of the pain and what they potentially could be able to do if the pain was better treated… that type of conversation that’s more guided by the patient and their… individual preferences.”

(Clinician 5)

Lastly, one clinician employed motivational interviewing, an empathetic, person-centered communication technique that encourages intrinsic motivation for change. Others reframed the recommendation to navigate disagreements and empower patients in the shared decision-making process. One clinician described:

“A lot of it I think is trying to enlist their help to choose something. I mean often times patients will [have] preferences about what they would like to use. Many of them at that point have already tried things in the past that maybe worked or didn’t work… when you ask them that, that seems to be a good starting point of trying to figure out what has worked in the past, what hasn’t worked and then starting from there.”

(Clinician 23)

Discussion

In this study, we found that chronic pain communication between older adults with advanced CKD and clinicians is hindered by treatment complexity and uncertainty, fragmented care across clinicians, and divergent treatment preferences. Clinicians and patients identified several strategies to address these challenges, including open communication that elaborates on clinician reasoning and validates patients’ experiences, a relationship- and values-centered approach to decision making, care team coordination, and patient advocacy. These findings highlight the need to further evaluate these communication processes and to develop targeted interventions that support chronic pain management in this population.

Consistent with studies in primary care, oncology, and physical therapy, both patients and clinicians in our study emphasized the need for validation, feeling understood, trust, rapport, and collaboration.^32–36 Our findings extend this literature by providing practical strategies to strengthen communication between clinicians and older adults with advanced CKD and chronic pain. The strategies outlined in Table 2 may prompt effective communication and reduce clinician and patient misunderstanding in a highly complex clinical context. For example, brief, proactive guidance helps patients ask targeted questions, navigate care from multiple specialties, and understand treatment risks in the setting of complexity. Yet, additional studies are needed to determine which communication strategies improve patient-clinician communication and patient-centered outcomes, such as pain interference and pain self-efficacy, in chronic pain.^37,38 Furthermore, our work describes the intersection of communication challenges and strategies specific to older adults with chronic pain and advanced CKD, demonstrating that previously identified strategies are critical to this patient population. Our study also identified distinct communication needs and strategies across care teams, patient advocacy, and values-based care. In particular, our study highlights the importance of team communication and values-centered communication within this population.

Our study identified an interpersonal layer of communication beyond the patient-provider dyad: the care team. Older adults with advanced CKD interact with multiple clinicians across different health systems. These multidisciplinary care teams, including primary care providers, specialists, family members or care partners, play critical roles in managing chronic pain in this population.^39,40 Therefore, interventions need to consider both person-centered, multidisciplinary, and system-level approaches to effectively care for older adults with CKD and chronic pain. Existing interventions for patients with advanced CKD focus on dialysis decision making.^41,42 In contrast, chronic pain interventions in primary care include decision aids for patients and EHR-based decision support tools for clinicians.^14,43,44 However, these interventions primarily target individual patient or patient-provider decision making. Future research should develop communication strategies at the intrapersonal, interpersonal, and system-level to optimize chronic pain management in this population. These efforts could build upon existing collaborations, such as the combined palliative care and nephrology service.⁴⁵

Our study has several limitations. First, this was a single center study which may limit generalizability. Second, given the limited empirical evidence on pain decision making in older adults with both chronic pain and advanced CKD, this study is exploratory and hypothesis generating. While we interviewed clinicians across multiple specialties and patients across the trajectory of advanced CKD, these qualitative findings should be taken as in-depth explanations and meaning rather than overarching generalizations.⁴⁶ Lastly, the data presented are based on semi-structured interviews and may not reflect interactions that occur within routine clinical care.

This qualitative study adds novel findings in chronic pain communication and decision making among older adults with advanced CKD. It highlights key barriers to effective communication and identifies strategies that are relevant to the complexities of this patient population. These findings underscore the need for patient- and system-directed interventions to support effective, collaborative pain conversations between patients and their clinicians.

Key Points:

• Barriers to chronic pain communication among older adults with advanced kidney disease include treatment complexity and uncertainty, fragmented care, and differences in treatment preferences.

• Strategies to navigate these conversations between older adults with advanced kidney disease and clinicians include open communication, collaborative care team approaches, patient advocacy, and relationship- and values-centered decision making.

Why does this matter?

This paper examines a novel intersection of chronic pain communication among older adults with advanced kidney disease. The findings identify key communication barriers and strategies and highlight the need for targeted interventions to support complex conversations between patients and clinicians.