Stakeholders’ views on reducing psychological distress in chronic obstructive pulmonary disease

Abstract

Context.

Psychological distress is highly prevalent among patients with chronic obstructive pulmonary disease (COPD), the top palliative care priority identified by such patients, and associated with poor outcomes. However, patients with COPD rarely receive care for psychological distress.

Objectives.

To identify the barriers and opportunities to reducing psychological distress among patients with COPD in the specialty pulmonary setting.

Methods.

We conducted semi-structured interviews based on Consolidated Framework for Implementation Research constructs with key stakeholders at two pulmonary clinics, including clinicians, staff, patients, and caregivers. We focused on the relevance, identification, and management of psychological distress in COPD care. We identified emergent patterns and concepts, developed and applied codes to the text, and examined the content in each code to identify key themes.

Results.

Thirty-one stakeholders participated in interviews (RR=64.6%). Nearly all pulmonary clinicians felt that psychological well-being was a critical, unmet patient need. Yet, most pulmonary clinicians reported that they lacked sufficient training and available resources to support patients, prioritized physical symptoms and medication management over emotional concerns, and perceived limited cultural support for such efforts in the pulmonary clinic setting. Patient and caregiver participants desired integration and prioritization of care addressing psychological distress into routine pulmonary care.

Conclusion.

Mitigating psychological distress is a palliative care priority in COPD. Integrating efficient, effective resources, such as tools or programs that address psychological distress, into pulmonary clinic settings serving a high volume of patients with COPD may improve the provision of supportive care to patients typically underserved by specialty palliative care.

INTRODUCTION

Chronic obstructive pulmonary disease (COPD) is a highly prevalent, debilitating, and incurable respiratory disease that often leads to breathlessness, functional limitations, and social isolation.¹ Psychological distress includes difficulties coping, negative changes in emotions, discomfort, and resulting harm.² Such distress is common among patients with COPD and is associated with poor health outcomes.^3–5 Depressive symptoms, a common manifestation of psychological distress in this population, are associated with worse quality of life, increased dyspnea, lower medication adherence, more frequent COPD exacerbations and hospitalizations, and increased risk of readmission after an acute exacerbation.^3–6 Care addressing psychological distress associated with COPD would likely improve patients’ clinical and functional outcomes. Patients with COPD and their family caregivers also identify coping with COPD and emotional symptoms as the two most important palliative care needs.⁷ Yet, specialty palliative care is rarely available or offered to patients with COPD.^8–12 Therefore, pulmonary and primary care physicians provide most supportive care to patients with COPD, also referred to as “primary palliative care” or “generalist palliative care.”^13,14 Much of the literature on improving palliative care in COPD focuses on end-of-life care or delivery in the most advanced phases of the disease.¹¹ However, the etiologies of depressive symptoms in COPD are complex. Psychological distress can occur with any level of COPD severity and the relationship is non-linear.^15,16

Pulmonologists provide longitudinal treatment and management to a large volume of patients with COPD and, therefore, are well-positioned to deliver supportive care to patients with COPD.^1,17 Integrated behavioral health could treat emotional distress, for which a large body of literature exists.^18,19 However, this existing evidence generally focuses on the identification and management of psychiatric conditions and is limited to primary care settings.^18,19 This is critically distinct from improving patients’ and caregivers’ ability to cope with serious illness and manage emotional symptoms co-occurring with debilitating chronic illness.¹⁹ Further, pulmonary clinics that serve COPD patients have not been a focus of integrated behavioral health delivery.

Given the prevalence of psychological distress among patients with COPD, the implications for untreated depressive symptoms on their clinical outcomes, and the importance of coping and emotional symptoms to patients and caregivers, improvements in primary palliative care delivery (i.e., supportive care delivered by pulmonologists and integrated into routine COPD care) should prioritize mental health needs. Towards our long-term goal of improving the quality of life of patients with COPD, we conducted a formative evaluation of the barriers and opportunities to identify and manage psychological distress in the pulmonary clinic setting.

METHODS

From July 2019 to May 2021, we conducted semi-structured interviews with clinicians, clinical staff, patients, and their caregivers drawn from two pulmonary specialty clinics as well as referring primary care clinicians. We selected these pulmonary clinics due to the high concentration of patients with COPD seeking care at these sites.¹ Both clinics serve a racially and economically diverse urban population. We recruited clinicians treating high numbers of patients with COPD and identified clinical staff, patients, and caregivers using convenience and snowball sampling.²⁰ All participants provided verbal consent to participate and they received $25 in compensation. The University of Pennsylvania Institutional Review Board approved all study procedures.

We based the overarching interview topics and discrete questions on Consolidated Framework for Implementation Research (CFIR) constructs.²¹ CFIR is an implementation science evaluation framework that guides the systematic assessment of factors likely to influence the successful implementation and effectiveness of complex health care delivery interventions.²² We chose CFIR because our central goal in this pre-implementation work was to identify key barriers, facilitators, and intervention characteristics necessary for successful future selection and implementation of programs to address this established clinical problem. The interview questions reflected the overall aim of the study and were based on CFIR constructs we chose based on their relevancy to this topic and stage of work: patient needs and resources, external policies or initiatives, culture, implementation climate, relative priority, available resources, self-efficacy, and necessary intervention characteristics.

Three research staff members (AS, DH, JLH) conducted the telephone-based, audio-recorded interviews and then performed thematic analysis of the transcripts using CFIR constructs to identify and classify emergent patterns and concepts.²³ All researchers are experienced in conducting qualitative research including thematic and content analysis. The process was supervised by a pulmonary and critical care physician with advanced training and specialized expertise in qualitative methods (JLH). JLH did not interview any pulmonary physicians to avoid bias in the responses, as she is a known colleague of these individuals. AS and DH are research staff familiar with the pulmonary clinic including some prior contact with clinicians, staff, and patients through prior research work but neither had personal relationships with any subjects. After developing a codebook, two research team members (AS and DH) independently reviewed each transcript, applying codes to the text and reaching consensus on any discrepancies in code applications. We managed the data using NVivo 12 (QSR International). Interviews continued until (a) no new themes emerged with subsequent interviews and (b) all team members agreed that the data represented sufficient information power for the aims and scope of the study.²⁴ After we conducted thematic coding, we organized the emergent themes and concepts into our pre-selected CFIR domains and constructs, combining constructs as necessary when there was thematic overlap.^23,25–27

RESULTS

Thirty-one stakeholders started and completed semi-structured interviews (response rate=64.6%). From pulmonary clinics, eight physicians, two nurse practitioners, and seven others (two registered nurses, two medical assistants, one pharmacist, one respiratory therapist, and one social worker) participated. We also interviewed three primary care physicians, one palliative care physician working with pulmonary patients, seven patients with COPD, and three caregivers of patients with COPD. Table 1 summarizes the themes, mapped to the final set of CFIR constructs.

Table 1.

Barriers and opportunities to reduce psychological distress among patients with COPD

Theme	Key Quotations
Patient needs and resources
Dominant view among staff and clinicians that psychological distress is common among patients with COPD and influences patients’ clinical outcomes	“I would say [that among patients with COPD,] there is an almost universal experience of some degree of depression and anxiety in terms of managing the chronic effects of the disease. There’s nothing in the world more anxiety provoking than feeling like a fish out of water, and this is a disease that causes that experience basically every time you try to move and do something.” Pulmonary Physician
	“In terms of a holistic approach to the disease, I feel like [mental health] is an indispensable component. I don’t think it necessarily is more important or less important than any other component, but I don’t think you can effectively manage the disease without understanding the mental health impacts and quality of life impacts it’s having.” Pulmonary Physician
Patients and caregivers desire emotional support as part of pulmonary specialty care	“[The doctor] can sit there and go through all the numbers you want with me and show me everything on a screen, but [the doctor] also needs to know what’s going on in my husband’s head and in his heart….I think given the severity of what these patients go through--I wholeheartedly know, I live it--it definitely affects the mental and emotional [well-being of] the patient. And I think it should be just as much of a priority as the actual, physical issue.” Caregiver
Patients’ caregivers should be integrated into interventions to provide support for patients between health system contar	“But if the person is around other people, I think all parties should be at the same counseling. At the same meeting, at the same setting, because you have to teach your surrounding on how to cope with a person [with COPD experiencing depression].” Patient
Self-efficacy
Pulmonary clinicians lack training and expertise in the identification and management of psychological distress	“[When I learned my patient was experiencing psychological distress], I went around and asked other physicians in our practice, what do you do in such a situation? Nobody had a good answer. A lot of them were like, not even aware that this was an issue. I asked our clinic nurses and they had no idea. They had no resources to offer and they felt caught off guard about like, we’re not trained to deal with this.” Pulmonary Physician
	“Unless a physician is really trained in mental illness, behavioral health problems, unless they’re tuned into figuring that out, their gut is responding to mental health and personality issues the same way they would have been in high school, for example. So, depending on what kind of person you are, if you were raised to be stoic, your response to depression might be, “it’s hard for everybody, but we just got to push through it.” That’s not necessarily very helpful for someone who’s actually suffering from depression.” Pulmonary Physician
Primary care physicians feel confident managing behavioral health needs of patients, but focus on psychiatric illness management rather than coping support for serious illness	“We see our patients on antidepressants, especially at the beginning, within four to six weeks of starting the medication to assess how they’re doing on it, assess for side effects, all of those kind of things, and then once they’re stable, you might get to a point of seeing them every six to 12 months, and then making an assessment of if they could come off of it. That to me seems better done in the primary care generalist or psychiatry setting rather than specifically in the pulmonology setting or if the pulmonologist is the only one.” Primary Care Physician
Relative priorities
Given the fixed and limited time available for patients’ appointments, pulmonary clinicians focused primarily on physical symptoms or medication management	“You have the pressures of getting through our clinic and like I said, addressing all of their primary pulmonary issues and, although their mental health issues probably are very integrally related to how they’re doing overall in terms of their health, it’s actually very difficult to address everything in the context of a 30-minute visit.” Pulmonary Physician
	“So I think that’s a barrier, just being such a specialty-focused center, it’s hard to give that attention to other aspects of the patienr’s life besides their pulmonary health. So we have to be really thoughtful about making that time, which is not focused upon currently.” Pulmonary Clinic Staff
Patients feel that psychological distress should be a priority in COPD care, given equal weight to physical symptoms	“[The ideal would be that the doctor and I are] just talking about the health thing for maybe about 10 to 15 minutes. And then, there will be another 15, 20 minutes on the mental issue.” Patient
	“You can’t intend for somebody to follow whatever procedures are necessary for good physical health, if you don’t address their mental health.” Patient
Available Resources
Pulmonary physicians lack access to necessary resources to support patients’ mental health	“But I find [referral to behavioral health] very, very difficult, so I don’t often refer. And if I do, I’m stumbling and bumbling around about how to do it. Of all the specialties in all of medicine, psychiatry is the most obscure and elusive, and the most difficult to figure out how to refer…. I don’t know who to call. Most psychiatrists.only take on a small panel of patients at a given time. it’s not like they’re wide open to referrals.” Pulmonary Physician
	“But because of the difficulties of getting people psychiatric care … I would be reticent to incorporate it into my overall practice unless there were systems in place to deal with the issues as they came up.” Pulmonary Fellow Physician
	“Probably, the other big gap is in access to clinics… Because the system is way backed up, the system is opaque, the system is not about … unless you’re in crisis, it’s not about immediate access. So, in the physical health side, we fall out of love with the mental health side pretty readily, and get frustrated and say, ‘I don’t know what to do.’” Pulmonary Physician
	“And Dr. [Pulmonologist] a couple times has recommended [counseling/therapy], and he said, well, ‘Why don’t you go see somebody.’ And I’m like, ‘Okay, well, who could you recommend?’ And he goes, well, he says, ‘I really don’t have anybody that I can recommend.’” Patient
Resources embedded in a pulmonary clinic facilitated management of patients’ mental health needs	“We do more recently have a social worker in our clinic now, so I would say I’m way more willing to explore those issues because I know that I can call him and have him help out.” Pulmonary Fellow Physician
	Again, time is concerning. I think, having a social worker present is, a social worker or equivalent, is necessary because I absolutely wouldn’t be able to deal with the arrangement of follow-up care. I mean, I can do it but it would be very taxing to do it and take away from my other duties.” Pulmonary Fellow Physician
An absence of closed-loop communication with primary care clinicians is a barrier to pulmonary clinicians’ use of this resource	“I would say, in an ideal world, I identify an issue, share it with our physician, our pulmonologist, who will contact physician-to-physician, their primary care doctor who would do something about it. Unfortunately, not all the primaries do. And I know that our doctors contact them, but often times nothing gets done.” Pulmonary Clinic Staff
Primary care clinicians identified mental health care as a priority, which was supported by their clinic structure and integrated resources	“We’re part of the Medicare CPC Plus program, which has given us money to have an integrated behavioral health provider in our office or part of the [health system integrated behavioral health center]. And so if someone has a positive depression screen, we’re able to refer directly to the [integrated behavioral health program] and get them set up often with a mental health provider in her office. Or if she doesn’t have the capacity to take on new patients, then they can refer them to community-based resources for therapy, medication management, those kinds of things.” -Primary Care Physician
Culture
Pulmonary specialty clinic culture is currently not supportive of addressing psychological distress	“I think it would be really challenging [to prioritize behavioral health care in the pulmonary clinic]. I think there would be a small group of really strong advocates. But I do think there would be a good deal of resistance mostly surrounding the barriers that we talked about. I do think if it’s bridged in the right way with actual resources people could come around on it…[Including] making people feel really comfortable that this is not going to add to their really long list of things [to do]. I think if all those things are accomplished, it’s possible, but definitely would need a lot of thought and coordination.” Pulmonary Fellow Physician
	“I wonder if some people might have the response of, ‘We’re a lung clinic. Why are we [addressing psychological distress]? There should be a mental health clinic that should address this issue, not us. Right?’ I don’t come from that viewpoint, certainly, because I think the holistic approach is really important, and there’s so much crosstalk between these issues that I think managing it in one kind of centralized location wouls be great.” Pulmonary Physician

Clinician recognition and patient needs and resources

Nearly all pulmonary clinicians felt that psychological well-being was a critical patient need that was not being met. They viewed this as a barrier to achieving comprehensive COPD care and optimal patient outcomes. However, they felt overwhelmed by the complexity of patients’ needs, including basic human needs, substance use, and medication adherence. Patient and caregiver participants all desired attention to emotional needs in pulmonary specialty care. They felt integration of systematic tools to recognize and mitigate psychological distress in this setting would reduce caregiver burden, decrease patients’ social isolation, and improve both patients’ and caregivers’ quality of life. They felt this would also facilitate management tailored to their disease and validate that distress may be part of the disease experience. Most felt their pulmonary and primary care physicians did not sufficiently support this aspect of their care, through lack of questioning about emotional symptoms or lack of tools to support them if they identified patients’ emotional distress. They recommended the use of telehealth modalities given patients’ functional limitations making in-person care burdensome or prohibitive. Some recommended interventions that incorporate caregivers or family members due to the high burden on family members and the need for caregivers to provide ongoing support to patients between visits.

Self-efficacy

Pulmonary clinicians reported that discussions of patients’ coping and psychological needs were rare and brief. Many pulmonary clinicians avoided the topic due to their perceived limited self-efficacy attributed to lack of training and available tools to triage and manage patient distress. This led pulmonary clinicians to frequently take no further action for patients presenting with distress, with a minority referring them back to primary care or, where available, the clinic-based social worker for further discussion. Primary care clinicians felt confident managing psychoactive medications and identifying patients who need specialized behavioral health care, in large part due to integrated care systems available within primary care, yet did not contextualize these symptoms as a part of the COPD experience.

Relative priorities

Given the fixed and limited time available for patients’ appointments, pulmonary clinicians focused primarily on physical symptoms or medication management. Treating clinicians themselves rarely reported directly engaging with psychological distress screening tools (e.g., Patient Health Questionnaire-2)²⁸ or the results when performed by medical assistants in their clinic. In contrast, primary care clinicians felt that the broad category of mental health, including coordination of care, was a priority in their clinical practice. They noted system-level initiatives and resources to improve behavioral health care, but did not directly relate this to palliative care. Patients and caregivers felt strongly that psychological needs should be a high priority in pulmonary clinics, with emotional symptoms and needs given equal weight to physical symptoms and needs. They felt that the physical and emotional aspects of the disease and its treatment were inextricably linked.

Available resources

Resources for addressing identified psychological distress varied. One pulmonary clinic had access to a social worker. Clinicians who used the social worker reported that knowledge of this resource allowed them to engage more with patients’ psychological distress and coping needs. However, despite the clinic investment in a social worker, many pulmonary clinicians did not use this resource for psychological distress despite the high needs of patients served by the clinic and the social worker’s commitment to providing this type of support. Clinicians who did not use this resource were either unaware they could access the social worker, did not know that the social worker was equipped to provide support for psychological distress, or did not assess their patients for psychological distress so needs remained unidentified. Primary care clinicians viewed themselves as an available resource to pulmonary clinicians, but pulmonary clinicians reported that an absence of closed-loop communication with primary care clinicians may cause gaps in care. Pulmonary clinicians also reported significant barriers to engaging with or referring patients to specialty behavioral health care due to limited insurance coverage, lack of appointment availability, difficulty navigating the referral system, and lack of professional relationships. Limited physical space, time, trained personnel, and financial resources were additional barriers to pulmonary clinic-based interventions. Some patients noted that if pulmonary clinicians identified emotional needs, the clinicians often had few resources to address them, leaving the patient frustrated.

Culture

Nearly all pulmonary clinicians and clinical staff reported that the culture of pulmonary specialty care did not currently support management of psychological distress. Some clinicians identified that psychological distress was outside the scope of the pulmonary clinic’s domain, which was instead focused on care such as respiratory medication management. Others felt that treating psychological distress primarily due to COPD was necessary to provide holistic COPD care but that the pulmonary clinic setting lacked this approach. Stakeholders identified that evidence that effective and scalable interventions directed towards reducing patient distress could improve patients’ clinical outcomes would lead to greater support within the existing clinic culture.

DISCUSSION

We conducted a formative evaluation of individual, structural, and contextual factors important to improving the delivery of care for psychological distress in pulmonary specialty settings. Findings from our 31 stakeholder interviews revealed that pulmonary clinicians recognize the emotional needs of patients with COPD, yet may avoid engaging patients in such discussions because they lack the necessary training, support, resources, and cultural environment to provide effective care. While primary care clinicians have training and integrated structures to support patients with behavioral health needs, these clinicians and resources may not adequately contextualize these emotional symptoms as manifestations of coping with COPD or as palliative care needs.

Our work builds upon existing evidence that the identification and response to psychological distress is a critical gap in the provision of comprehensive care in COPD management (Figure 1).^4,7,16,29 Although such distress is the top palliative care priority of patients with COPD and their caregivers,³⁰ screening for emotional symptoms has not been widely implemented and patients receive little supportive care to address these needs.³¹ Our findings confirmed that pulmonary clinicians are highly aware of the prevalence and impact of psychological distress in COPD but lack the self-efficacy and resources to identify and manage these symptoms. However, patients and clinicians reported that adding or training non-physician pulmonary staff to ensure effective screening and initial management was highly desirable. There are evidence-based treatments for symptoms of anxiety and depression in COPD, such as a coping skills training program delivered via telephone.^4,5,32,33 Targeting routine interventions at patients’ highly prevalent emotional symptoms and coping needs may also decrease the need for and improve the efficiency of specialty palliative care programs. These programs often consist of complex, multidisciplinary interventions deploying specialized staff who are already in short supply, limiting their ability to respond given the high burden of need among patients with COPD.^34–37 However, appropriate identification and management of psychological distress earlier in COPD and as part of routine pulmonary care may prevent future frequent hospitalizations, treatment non-adherence, and decline in physical functioning, all frequently proposed triggers for palliative care in COPD.^13,31 Reframing psychological distress as a palliative care need in COPD care, rather than a behavioral health concern, may improve clinical uptake of programs to address these needs. Further, generating and presenting high-quality evidence that such programs improve other health outcomes among patients with COPD may appeal to clinicians and health systems historically focused on managing physical symptoms and health care utilization.

Figure 1. Necessary components to expand routine pulmonary to include identification and response to psychological distress.

COPD: chronic obstructive pulmonary disease

This study has obvious limitations. We interviewed stakeholders from two pulmonary specialty clinics in a single urban health system, therefore limiting its generalizability. There may be self-selection bias represented in the findings, as stakeholders may have participated because they viewed psychological distress as important. Nevertheless, our findings provide insight into previously unexplored barriers to meeting the palliative care priorities of patients with COPD within the specialty pulmonary setting.

Mitigating psychological distress is well-established as a critical gap in high-quality COPD care and as a palliative care priority for this incurable, highly burdensome condition. Yet little progress has been made on identifying and implementing effective interventions to address this need. Integrating efficient and effective behavioral health resources into pulmonary specialty care of COPD should include (1) adding or training pulmonary staff to provide psychological risk assessment and basic behavioral health care tailored to the chronic lung disease experience and (2) augmenting referral and communication pathways to existing behavioral health and early palliative care resources outside the pulmonary clinic. This targeted approach to addressing high priority needs of patients with COPD may be an effective way of improving the provision of supportive care to a population of patients typically underserved by specialty palliative care. We now seek to build upon these findings by identifying the mechanisms through which palliative care interventions improve the outcomes of patients with COPD experiencing psychological distress and identifying specific barriers to future widespread implementation of such interventions.

KEY MESSAGE.

This article describes a formative evaluation of barriers and opportunities to addressing psychological distress among patients with chronic obstructive pulmonary disease, which is such patients’ top palliative care priority yet rarely addressed. The results indicate that stakeholders desire integration of such care into pulmonary settings but will require additional resources.