IDENTIFYING Priority Challenges of Older Adults with COPD - A Multiphase Intervention Refinement Study

Abstract

Background:

Identifying priority challenges of older adults with COPD is critical to designing interventions aimed at improving their wellbeing and independence.

Objective:

To prioritize challenges of older adults with COPD and those who care for them to guide refinement of a telephonic nurse coach intervention for patients with COPD and their family caregivers (EPIC: Empowering People to Independence in COPD).

Design:

Multiphase study guided by Baltes Theory of Successful Aging and the 5Ms Framework: Phase 1: Nominal group technique (NGT), a structured process of prioritizing responses to a question through group consensus. Phase 2: Rapid qualitative analysis. Phase 3: Intervention mapping and refinement.

Setting:

Ambulatory, virtual

Participants:

Older adults with COPD, family caregivers, clinic staff (nurses, respiratory therapists), clinicians (physicians, nurse practitioners), and health system leaders

Results:

NGT sessions were conducted by constituency group with 37 participants (n=7 patients, n=6 family caregivers, n=8 clinic staff, n=9 clinicians, n=7 health system leaders) (Phase 1). Participants generated 92 statements across five themes (Phase 2): 1) “Barriers to care”, 2) “Family caregiver needs”, 3) “Functional status and mobility issues”, 4) “Illness understanding”, and 5) “COPD care complexities”. Supplemental oxygen challenges emerged as a critical problem, and prioritized challenges differed by group. Patients and clinic staff prioritized “Functional status and mobility issues”, family caregivers prioritized “Family caregiver needs”, and clinicians and health system leaders prioritized “COPD care complexities”. Intervention mapping (Phase 3) guided EPIC refinement focused on meeting patient priorities of independence and mobility but accounting for all priorities.

Conclusions:

Diverse constituency groups identified priority challenges for older adults with COPD. Functional status and mobility issues, particularly related to supplemental oxygen, emerged as patient prioritized challenges.

Implications:

Patient-centered interventions for older adults with COPD must account for their prioritized functional and supplemental oxygen needs and explore diverse constituent perspectives to facilitate intervention enrichment.

INTRODUCTION

Chronic obstructive pulmonary disease (COPD) is a leading cause of global disability and death among older Americans¹. Progressively debilitating breathlessness and functional decline lead to significant burden for patients and their family caregivers as well as high healthcare utilization near the end of life^2,3. The effect on the U.S. health system will be amplified in the next decade when over half of adults with COPD will be over age 75⁴, yet the highest priority care needs for this population have not been systematically defined. Understanding their priority challenges is critical to developing interventions and policies to improve individuals’ wellbeing and independence⁵.

We have conducted a multiphase formative and summative evaluation called “Project EPIC”, which has sought to develop, refine, and test EPIC (previously “Early Palliative Care In COPD”, now “Empowering People to Independence in COPD”), a telephonic nurse coach intervention in COPD to address their care needs⁶. EPIC was adapted from the rigorously tested ENABLE (Educate, Nurture, Advise, Before Life Ends) intervention that improved quality of life and mood for patients with advanced cancer and their families^7–12. Project EPIC has followed the NIH Stage Model for Behavioral Intervention Development¹³ and engaged patients, family caregivers, and clinicians across multiple phases. We identified priority early palliative care needs of adults with COPD and their family caregivers (NIH Stage 0, EPIC Phase I)¹⁴, explored barriers and facilitators to early palliative care integration in COPD (EPIC Phase II)¹⁵, and demonstrated broad support for early palliative care and the development of EPIC. We subsequently found EPIC to be feasible and acceptable in a cohort of patients with COPD and their family caregivers (NIH Stage I, EPIC Phase III])⁶, informing the current study¹⁶.

A limitation of Project EPIC thus far echoes a broader issue in COPD clinical research of insufficient inclusion of older adults.¹⁷ Older adults with COPD often have unique challenges, and the Institute for Healthcare Innovation and the American Geriatrics Society identified the “5Ms” Framework for Age-Friendly Health System to address values and care needs of older adults specifically: Mind, Medications, Mobility, What Matters, and Multicomplexity¹⁸. The fourth “M” (What Matters) emphasizes the need to identify what matters most to older adults, a gap in COPD research^17,19. Without knowledge of their daily challenges and values, interventions may be inadequate in meeting their specific needs. To ensure that EPIC includes essential elements to meet the challenges of adults growing older with COPD, the current multiphase intervention refinement study (NIH Stage I, EPIC Phase IV) takes the critical next step in Project EPIC of identifying their priority challenges and refining EPIC to be more applicable across the lifespan, with the following research questions: 1) What are the greatest challenges of being older and living with COPD?, 2) What are the greatest challenges of caring for this population?, 3) What gaps exist in the EPIC intervention for older adults?, and 4) How can EPIC be refined to meet their prioritized challenges?

METHODS

We conducted a multiphase intervention development study from January 2021 to August 2021 guided by Baltes’ Theory of Successful Aging and the 5Ms framework^16,18,20,21 with 3 key phases (Figure 1): Phase 1: Nominal group technique (NGT), a structured process of prioritizing responses to a question through group consensus, identified statements and priorities of a diverse cohort of constituents²²; Phase 2: Rapid qualitative analysis of statements generated actionable themes and subthemes; and, Phase 3: EPIC was refined through intervention mapping and gap identification.

Figure 1. Study Phases and Products from Nominal Group Technique Sessions to Rapid Qualitative Analysis to Intervention Mapping.

This figure details the three phases of our intervention development study through Nominal Group Technique, rapid qualitative analysis, and intervention mapping, gap identification, and refinement. Abbreviations: EPIC = Empowering People to Independence in COPD

Phase 1: Nominal Group Technique

We conducted Phase 1 (NGT) from January 2021 to May 2021 (Figure 1), comprising five NGT sessions with representation from constituency groups informed by Wagner’s Chronic Care Model²³: 1) older adults with COPD, 2) family caregivers, 3) clinic staff (nurses, respiratory therapists, lay navigators), 4) clinicians (physicians and nurse practitioners from internal medicine and pulmonary medicine), and 5) health system leaders (physician, nursing, and care transitions leaders). Patient participants were identified and recruited by phone from the University of Alabama at Birmingham (UAB) pulmonary clinic with the following inclusion criteria as we have previously done⁶,¹⁴: 1) ≥65 years; 2) spirometry within the past year demonstrating an FEV₁/FVC <0.70 with an FEV₁ <80%; 3) able to speak and read English; 4) have a family caregiver, defined as a “family member, partner, or friend who plays an important role in helping you with day-to-day activities or medical care”; and 6) at least one of the following: a) hospitalization for COPD in the year prior; b) modified Medical Research Council (mMRC) scale for dyspnea ≥2; or c) on supplemental oxygen. Exclusions were: 1) other major pulmonary diagnoses, i.e. idiopathic pulmonary fibrosis, bronchiectasis, or asthma; 2) treated in the prior two years for cancer; 3) have a history of self-reported or chart reviewed major mental health condition; and 4) have no access to a computer or smart phone with internet access. Family caregiver participants were included if they were ≥19 years and were able to speak and read English, and they were similarly excluded if they did not have access to a computer or smart phone with internet access. Patients and their family caregivers provided written informed consent to participate. Clinic staff were recruited by emails sent to our pulmonary clinic, and clinicians were recruited by emails sent to our pulmonary, primary care, and hospitalist teams at UAB. Health system leaders were also recruited by email outreach mostly to UAB leaders, while some were identified using purposive and snowball sampling from national leaders in geriatrics. Clinicians, clinic staff, and health system leaders were provided a study information sheet by email and provided verbal consent to participate. All participants were remunerated $50 for participation. The UAB Institutional Review Board approved this study (IRB-170209003).

NGT is a structured process to prioritize aspects of a research problem or question through group consensus²². It was developed to include perspectives of all key informants in a problem space and to balance all participants’ input equally. NGT uses a ranking process that involves participants selecting and prioritizing issues from their own perspective after an idea generation phase. The approach is frequently used to order challenges in a specific problem space based on importance^24–27. The advantages of this approach include an egalitarian elicitation of responses from all members of a given group, development of multiple perspectives on an issue, effective prioritization of a problem’s root causes, and enabling each group to reach a saturation of statements through multiple rounds of statement generation²⁴.

As we have done previously, we conducted the NGT process virtually using Zoom and a proprietary software system developed at the UAB Division of Continuing Medical Education²⁸. The NGT sessions were conducted by constituency group. Three study team members (ASI, MAB, and RO) iteratively refined a single question per group, with the following final questions delivered to each group:

• Patients: “What are some unique challenges you face as an older adult living with COPD?”

• Family caregivers: “As your loved one with COPD has gotten older, what are some unique challenges you face when caring for them?”

• Clinic staff and health system leaders: “What are some unique challenges you face in caring for or supporting the care of people who are older and have COPD?”

• Clinicians: “What are some unique challenges you face when caring for people who are older and have COPD?”

Participants logged in online to the internally developed proprietary web software system and concurrently logged in or called in to a Zoom videoconference call. A trained NGT moderator (RO) facilitated each session. Following introductions, the moderator commenced with the idea generation phase, presented the question, and asked participants to write down responses to the question during a 5-minute silent period. In a round-robin format, each participant then contributed a single idea expressed as a phrase or brief statement based on their experiences, knowledge, and perspectives. Each contribution was captured verbatim in a round-robin fashion and displayed on the shared participant screen as part of a list of contributed items. This process was repeated until the group felt that all significant ideas had been captured. Each listed statement was reviewed to ensure that all participants had a shared understanding of each item. Using the online software, participants then clicked their three most important/significant statements. Once everyone had completed the selection process, participants ranked three items from the modified list in the second round. The statement that each participant perceived as most important was assigned a weight of 3, the second most important a weight of 2, and the third most important a weight of 1. These votes were tabulated and presented to the group, who were asked to share their impressions. This process was repeated for each constituency group until a final spreadsheet table was generated that included all statements and their priority ranking within each constituency group.

Phase 2: Rapid Qualitative Analysis

We conducted Phase 2 (Rapid Qualitative Analysis (RQA)), between May 2021 to June 2021 (Figure 1). RQA efficiently provides actionable items to guide intervention refinement^29–32. Two study team qualitative experts who did not participate in the NGT sessions (ASI and RDW) reviewed the spreadsheet output from Phase 1 and iteratively organized all statements into broad themes and subthemes using Excel. ASI and RDW individually coded the statements and reconvened in stages to explore inter-coder reliability and to continue refining themes and subthemes for all statements, with a third study team member (MAB) arbitrating areas of disagreement. Ultimately, a finalized table of broad themes and subthemes was generated for all statements.

Phase 3: Intervention Mapping and Geriatrics Refinement

We conducted Phase 3, “Intervention Mapping, Gap Identification, and Refinement”, between June 2021 to August 2021 (Figure 1). Using a modified Intervention Mapping approach³³, study team members (ASI, RDW, MA, AB, JCD) took the RQA-generated tables from Phase 2 and systematically mapped all broad themes, subthemes, and statements directly to the EPIC intervention. We identified intervention gaps and refined EPIC to fill those gaps with a focus on enhancing intervention uptake and dissemination. Though we entered this phase with an intentional goal of prioritizing patient prioritized challenges, we examined all statements, themes, and subthemes from all constituency groups to guide intervention refinement and to focus specific areas. Details of the existing EPIC intervention have been described elsewhere.^6,14,16

Target Sample Size

We selected a target sample size of approximately 50 total participants for this study. This goal accounted for recommended sample sizes for nominal group technique sessions, in which approximately 10 participants per session is appropriate.³⁴ We also accounted for recommendations on sample sizes for rapid qualitative analyses that focus on generating information power and sufficiency.^30,35,36

RESULTS

NGT Sessions (Phase 1) and Rapid Qualitative Analysis (Phase 2)

Of the 55 total participants who consented to participate, 37 participants (67%) attended and completed the virtual NGT sessions by constituency group as follows: patients (n=7), family caregivers (n=6), clinic staff (n=8), clinicians (n=9), and health system leaders (n=7) (Table 1). Overall, 27 (73%) participants were female, and 9 (25%) were Non-Hispanic Black or Hispanic. Patient participants were a mean age of 68.4 years, with an average %-predicted FEV₁ of 36%±11%, and 86% were on continuous supplemental oxygen. Family caregivers were an average age of 55.5 years and were equally represented by spouses and children of patient participants. Clinicians were mostly physicians who practiced across care settings and represented pulmonary, primary care, and hospitalist medicine. Clinic staff were nurses, respiratory therapists, and a lay navigator, and health system leaders included physicians (57%) and non-physician administrators (29%).

Table 1.

Participant Characteristics by Constituency Group (N=37)

	Patients with COPD (n=7)	Family Caregivers* (n=6)	Clinic Staff (n=8)	Clinicians (n=9)	Health System Leaders (n=7)
Age (years)	68.4 (64–72)	55.5 (34–67)	35.9 (17–56)	40.3 (31–58)	47.4 (37–62)
Sex (Female)	3 (43%)	6 (100%)	7 (88%)	7 (78%)	4 (57%)
Race (Black and Hispanic)	1 (14%)	2 (33%)	3 (25%)	2 (22%)	1 (14%)
Highest Grade Completed
Some college or technical school	4 (57%)	4 (67%)
College degree	1 (14%)	2 (33%)
Graduate degree	1 (14%)
Married	3 (43%)	4 (67%)
Currently Employed	0	1 (17%)
Health Insurance	7 (100%)	5 (83%)
FEV1 (%-predicted)	36% (11%) (17%−53%)
On Continuous Supplemental Oxygen	6 (86%)
Modified Medical Research Council Dyspnea Scale (Range 0–4)	2.1±1.5
≥1 Hospitalization in Prior Year	2 (29%)
Current Practice Role
Physician				8 (89%)	4 (57%)
Nurse Practitioner				1 (13%)
Nurse			4 (50%)
Respiratory Therapy			3 (38%)
Care Guide			1 (13%)
Administrator					3 (29%)
Practice Site
Hospital Only				3 (33%)	5 (71%)
Ambulatory Clinic Only				3 (33%)	1 (14%)
Hospital and Clinic				3 (33%)	1 (14%)
Specialty
Pulmonary				3 (33%)	1 (14%)
Primary Care				3 (33%)	1 (14%)
Geriatrics and Palliative Care				1 (11%)	2 (29%)
Hospital Medicine				2 (22%)
Care Transitions/Service Line					2 (29%)
Academic Rank
Assistant Professor				4 (44%)
Associate Professor				1 (11%)
Professor				1 (11%)

^*50% spouses and 50% children of patients

Participants generated a total of 92 distinct statements during the NGT sessions that we grouped into five broad themes and 18 subthemes (Figure 2, Supplemental Tables 1 and 2). The five broad themes were: 1) “Barriers to care”, 2) “Family caregiver needs”, 3) “Functional status and mobility issues”, 4) “Illness understanding”, and 5) “COPD care complexities”. Table 2a demonstrates how subthemes were situated across constituency group and illustrates some shared subthemes, eg. “Barriers to treatment” and “Managing expectations in coping with advanced COPD”.

Figure 2. Themes and Subthemes of Challenges Experienced by Older Adults Living with COPD - Contextualized within the 5Ms Framework.

This figure illustrates the five broad themes and 18 subthemes that emerged from statements generated during the rapid qualitative analysis of Nominal Group Technique sessions and contextualized around the 5Ms framework. An overarching thread of supplemental oxygen challenges emerged and was shared across broad themes and constituency groups.

Table 2:

Themes, Prioritization, and a Shared Thread of Supplemental Oxygen Challenges

Table 2a. Themes and Subthemes on Challenges of Being Older and Living with COPD or Caring for this Population Across Constituency Groups
Themes	Subthemes		Subtheme Present within Constituent Groupa
			Patients	Caregivers	Clinic Staff	Clinicians	Health System Leaders
Barriers to Care	Barriers to care access				a
	Barriers to early palliative care
	Difficulty traveling		a		a
	Barriers to treatment		a			a
	Navigating complex healthcare systems
Family Caregiver Needs	Family caregiver burden
	Challenges supporting patient needs			a
Functional Status and Mobility issues	Difficulty maintaining functional status
	Impaired mobility		a	a	a
Illness Understanding	COPD and the environment
	Understanding COPD and its progression
	Importance of diet, exercise, inhaler use
	Inhaler education
	Recognizing symptoms and when to seek care
COPD Care Complexities	Managing advanced COPD
	Managing COPD specifically in older adults						a
	Managing expectations in coping with progressive COPD
	Managing multimorbidity in COPD
Table 2b. Nominal Group Technique Prioritized Top 3 Challenges by Constituency Group
Themes	Subthemes		Patients	Family Caregivers	Clinic Staff	Clinicians	Health System Leaders
Barriers to Care	Barriers to care access		3			3
	Barriers to early palliative care
	Difficulty traveling		2a
	Barriers to treatment			3	3
	Navigating complex healthcare systems						3
Family Caregiver Needs	Family caregiver burden			1
	Challenges supporting patient needs			2a
Functional Status and Mobility issues	Difficulty maintaining functional status		3
	Impaired mobility		1a		1
Illness Understanding	COPD and the environment
	Understanding COPD and its progression
	Importance of diet, exercise, inhaler use				2
	Inhaler education					2
	Recognizing symptoms and when to seek care				3
COPD Care Complexities	Managing advanced COPD						2
	Managing COPD specifically in older adults						1
	Managing expectations in coping with progressive COPD		3			1
	Managing multimorbidity in COPD					3
Table 2c. Shared Thread of Supplemental Oxygen Challenges Across These and Subthemes
Themes	Subthemes	Shared Thread of Supplemental Oxygen	Statement and Constituency Group (1=Patients, 2=Family Caregivers, 3=Clinic Staff, 4=Clinicians, 5=Health System Leaders)
Barriers to Care	Barriers to care access	How supplemental oxygen impacts care access	“Access to care can be restricted when mobility is impaired, i.e. transport issues due to oxygen tanks” (3)
	Difficulty traveling	How supplemental oxygen impacts travel	“When you carry the tank around you have to figure out how long it’s going to last” (1)
	Barriers to treatment	Barriers to getting supplemental oxygen	“It’s been very difficult to get a portable concentrator” (1) “Difficulty obtaining an appropriate delivery system for supplemental oxygen” (4)
Functional Status and Mobility	Impaired mobility	Oxygen impacts mobility	“Having to lug these oxygen tanks around” (1) “Difficulties moving a breathing tank around the living space” (2) “Patients find it difficult to move around due to shortness of breath and being tethered to a tank” (3)
COPD Care Complexities	Managing COPD specifically in older adults	Oxygen and falls	“Difficulty with falls particularly patients falling over equipment when on supplemental oxygen” (5)

^aRelated specifically to supplemental oxygen issues and exemplified in Table 2c.

Notes: Table 2a shows how the themes and subthemes were shared across constituency groups. The shaded boxes indicates the presence of a subtheme in that constituent group. For example, “Barriers to care access” was present in patients, clinic staff, clinicians, and health system leaders. Table 2b shows how constituent groups prioritized a subtheme. Table 2c illustrates the shared thread of supplemental oxygen challenges that crossed themes and subthemes, alongside exemplary statements.

In contrast, Table 2b illustrates how each constituency group prioritized challenges differently. For example, patient and clinic staff participants prioritized statements within the subtheme of “Impaired mobility”, while family caregiver participants prioritized ‘Family caregiver burden’, clinician participants prioritized ‘Managing expectations in coping with progressive COPD’, and health system leaders prioritized a statement in ‘Managing COPD specifically in older adults’. Many of the prioritized challenges included the overarching thread of ‘Supplemental oxygen challenges’ (Table 2c), which spanned the themes of “Barriers to care” [“When you carry the tank around you have to figure out how long it’s going to last” (Patients)], “Functional status and mobility issues” [“Having to lug these oxygen tanks around.” (Patients) and “Difficulties moving a breathing tank around the living space.” (Family caregivers)], and ‘COPD care complexities’ [“Difficulty with falls particularly patients falling over equipment when on supplemental oxygen.” (Health system leaders)].

EPIC Mapping, Gap Identification, and Refinement (Phase 3)

We identified gaps in the EPIC intervention across 12 of the 18 (67%) subthemes and across all constituency groups, with a focus on patient-identified priorities of functional status and mobility (Table 3). Priorities of other constituency groups from Table 2b helped us identify further areas of focus. Major refinements included generating entirely new sub-sections on geriatrics syndromes, mobility, and falls [supervised by an expert in geriatrics and mobility (CJB)] and refining a problem-solving exercise to focus on impaired mobility due to supplemental oxygen (Table 3).

Table 3.

Themes, Subthemes, and Statements Identified as Gaps and How EPIC is Being Refined

Themes	Subthemes	Exemplary Statements Identified as Gap by Constituency Group*	How EPIC is Being Refined to Address Gaps
Barriers to Care	Barriers to care access	General access to care - older patients are dependent on others to bring them for care and explain appropriate care to them. (4); Many older adults live in facilities without access to care. (3)	Add to resources document for family caregivers.
		Access to pulmonology (5)	Provide resources on pulmonologists.
	Barriers to early palliative care	Encouraging innovation and willingness to pilot programs [early palliative care] in these areas (5); Pulmonologists’ reluctance to speak about palliative care earlier in the disease cycle (5)	Improve palliative care definition and the explanation of the spectrum of palliative care to hospice. Discuss how to talk to clinicians about palliative care.
	Difficulty traveling	When you carry the tank around, you have to figure out how long it’s going to last (1); Access to care can be restricted when mobility is impaired, i.e., transport issues due to oxygen tanks (3)	Add transportation resources/services, specifically related to older adults. Add mobility and oxygen to problem solving.
	Barriers to treatment	It’s been very difficult to get a portable concentrator (1); Difficulty obtaining an appropriate delivery system for supplemental oxygen (4)	Add supplemental oxygen delivery systems to transcripts. Encourage asking clinician about supplemental oxygen in transcripts.
		Lack of compliance with medication at home (3)	Add medication adherence to script.
		Unwillingness to change habits that hinder breathing process (e.g., reducing use of perfume) (2)	Add lines in script about goals for each week and meeting goals.
		Patients tend to hesitate to seek care during the pandemic, this leads to problems tracking breathing (3)	Add to script – “How are you dealing with the changes related to the pandemic?” Reiterate need for seeking care and telehealth options.
	Navigating complex healthcare systems	Learning the healthcare system: e.g. figuring out how to work with oxygen tank suppliers (2)	Encourage patient to talk with Durable Medical Equipment company. Add to resources. Help patients and family caregivers define barriers to accessing care and navigating system.
Caregiver Needs	Family caregiver burden	Striking the right balance between being helpful and hovering (2)	Add sentence in the script that the right dose of support can look different at different times. Discuss open lines of communication. Effective social support requires really good communication.
	Challenges supporting patient needs	Making sure that oxygen is always handy (backup batteries/tanks) (2)	Add mobility and oxygen to problem solving.
		Taking over some of the physical tasks that your partner used to do (2); Being able to take all activities off a patient’s plate (that they don’t want to do) (2)	Add information on balancing roles and dyadic communication.
		Relocating to a more conducive breathing environment (2)	Add more on improving environment at home.
Functional Status and Mobility	Difficulty maintaining functional status and Impaired mobility	Having to lug oxygen tanks around (1); Doing housework - mopping the floor (1); Taking a shower or a bath is a real chore; particularly drying off (1); Difficulties moving a breathing tank around the living space (2); Patients find it difficult to move around due to shortness of breath and being tethered to a tank (3)	Add mobility and oxygen to problem solving.
		I can only walk a little bit before I have to rest (1); Making sure that patients can complete daily activities - due to lack of mobility and support this may be a challenge (3)	Add section on mobility and growing older.
		Patient’s mobility is more challenging because she has become unsteady (2)	Add questions to script and information about mobility aides, balance, gait instability, safety.
Illness Understanding	Importance of diet, exercise, inhaler use	Communicating to patients how important proper inhaler use, diet and exercise are to the patient’s health (3); Lack of compliance with medication at home (3)	Add to sections on exercise and nutrition. Add to script about medication adherence.
COPD Care Complexities	Managing expectations in coping with progressive COPD	Navigating patients’ goals and expectations as they progress through the stages of COPD (e.g. limits of physical activity and how it changes over time and how to manage symptoms) (4); The hardest thing is recognizing what I cannot do, seems it’s something new every day (1)	Discuss practical examples of functional limitations. Emphasize discussing functional limitations and changes with clinicians.
	Managing advanced COPD	COPD patients who experience air hunger despite having regular [oxygen saturation] (3); Low evidence in treating dyspnea effectively (5)	Refine breathlessness action plan. Include more on breathing techniques.
	Managing COPD specifically in older adults	Difficulty with falls; patients falling over equipment on oxygen (5)	Add section on mobility, falls, and home safety.
		Difficulty adhering to medication regimen due to cognitive and functional impairment, sensory impairment, and/or inadequate resources or support (5)	Add to transcript about functional, sensory, cognitive barriers and how these resonate. Talk to clinician and pulmonary clinic. Encourage participants to discuss these issues with their clinician. Add resources for interventions that may help older adults with functional impairments.
		Memory loss in the patient, e.g. forgets conversations and forgets treatment (2)
		Cachexia and frailty (5)	Add a section on geriatrics syndromes. Add to diet and nutrition section regarding weight loss.

^*This table includes statements that identified as gaps in the EPIC intervention. For all statements and their rankings, see supplemental table. 1=Patients, 2=Family Caregivers, 3=Clinic Staff, 4=Clinicians, 5=Health System Leaders

Abbreviations: EPIC = Empowering People to Independence in COPD

DISCUSSION

This multiphase intervention development study engaged diverse constituency groups to identify challenges specific to older adults with COPD, which involved five broad themes: 1) “Barriers to care”, 2) “Family caregiver needs”, 3) “Functional status and mobility issues”, 4) “Illness understanding”, and 5) “COPD care complexities”. Though some themes were shared across constituency groups, with supplemental oxygen challenges emerging as a critical problem, groups prioritized challenges differently. Generated topics guided geriatrics refinement of EPIC, our novel telephonic nurse coaching intervention in COPD. This approach illustrates how a 5Ms framework to COPD care can create a thorough understanding of the challenges patients and their families experience, and our data highlight the importance of engaging diverse constituents during intervention development and refinement.

Compared to the literature on palliative care in COPD^5,37, data on specific care needs of older adults with COPD and their families are limited. In a survey-based study, older adults with COPD assigned amounts of time they would want to spend discussing a set of healthcare priority items with their clinician.³⁸ Similar to our results, improving functional status and physical well-being were high priority items. Adults living with COPD often experience reduced functional status, decreased mobility, and multimorbidity, and these frequently occur ahead of their chronological age^39–41. Patient participants in our study overwhelmingly discussed functional- and mobility-related challenges; these results demonstrate that addressing geriatrics syndromes in COPD is central to patient wellbeing at a similar or higher priority to other factors traditionally focused on by clinicians and health systems.

We grounded our study in the 5Ms framework of Age-Friendly Health Systems, with a particular focus on the fourth M of what matter most to patients as challenges. We enriched the intervention by also including diverse constituents’ perspectives. Supplemental oxygen challenges emerged as a critical priority across all constituency groups and 5Ms domains of Mobility to What Matters and to Mind (Figure 2). Patient and family caregiver participants generated statements related to the barriers that supplemental oxygen presented for mobility, functional status, and travel. Clinicians voiced concerns about difficulties in prescribing portable oxygen delivery systems, and health system leaders were concerned about older adults with COPD falling due to long oxygen tubing. We previously found that older adults with COPD who used supplemental oxygen were twice as likely to report social isolation and loneliness compared to the general population without COPD⁴². Combined with our current results, we highlight an important tradeoff between mortality benefit in a select subgroup of people living with COPD and an increased risk of impaired mobility and isolation. This emphasizes the need to incorporate a 5Ms approach for all patients who may be on supplemental oxygen. Most prescribed supplemental oxygen delivery systems rely on heavy metal tanks that are difficult to transport, especially for older adults with COPD who often have frailty and reduced muscle mass. While increasing portability of supplemental oxygen deliver systems may help older adults to maintain independence, such systems are expensive and frequently out of reach, especially for those without health insurance. Clinicians should use evidence-based guidelines to correctly identify supplemental oxygen eligibility, assess for ongoing clinical necessity, and prescribe portable and lightweight options for this population whenever possible; meanwhile, nationwide policies must match this need for independence by making portability a priority and reducing the high costs of portable supplemental oxygen delivery systems^43–46.

Our project continued an arc of Project EPIC⁶ which employed the NIH Stage Model for Behavioral Intervention Development to iteratively create and refine EPIC with a geriatrics lens. We engaged diverse constituents to identify and prioritize challenges of being older and living with COPD and then integrated their priority challenges to fill intervention gaps. We intentionally sought to fill patient-identified gaps in the EPIC intervention leading to major EPIC refinements. However, we also included diverse constituency groups in this study, which is a major strength of our approach (Table 3). Including a diversity of constituency groups with divergent priorities enriched the EPIC intervention and identified additional focus areas that might have otherwise been missed, e.g. communication with clinicians and staff, medication adherence, and falls, thus emphasizing how patients and their families are members of a broader healthcare team, thus enriching the intervention. We are taking the next step to test EPIC in a pilot hybrid randomized controlled trial of older adults with COPD and their family caregivers¹⁶, and future research will explore how proactively addressing geriatrics and palliative care needs could also help middle-aged adults with COPD who often face aging-related challenges before their peers.

This is a single-site study and could benefit from replication in other settings. Notably, our study was conducted in the rural Southern United States, where COPD prevalence is high, mortality is rising in rural areas, and geriatrics and palliative care resources are limited⁴⁷; hence providing a unique, previously under-recognized perspective. Our use of NGT is a major strength that offers an egalitarian way to elicit diverse prioritized challenges for patients and their family caregivers. While a virtual format was convenient for many, safer for vulnerable populations during the COVID-19 pandemic, and how NGT is historically conducted, it may have made it difficult for participants without internet access. Future research should seek to diversify perspectives of individuals without internet access and those from historically disadvantaged populations who may have unique challenges as they age.

CONCLUSION

Using Baltes Theory of Aging and the 5Ms framework, we engaged diverse constituency groups in a multiphase study that identified key priorities of growing older with COPD and caring for this population that informed comprehensive refinement of the EPIC intervention aimed at improving wellbeing and independence in COPD across the lifespan. Challenges related to supplemental oxygen and its lack of portability emerged as a critical problem. Addressing this priority will require a concerted effort by payors, policy makers, and providers with great potential to improve the wellbeing of patients and their families.

Supplementary Material

Supinfo

Supplementary Table S1. Patient and Family Caregiver Statements, Scores, and Rankings

Supplementary Table S2. Clinic Staff, Clinicians, and Health System Leader Statements, Scores, and Rankings

Key points

• In a cohort of older adults with COPD, family caregivers, clinic staff, clinicians, and health system leaders, five themes emerged on the greatest challenges of living with COPD or caring for this population: “Barriers to care”, “Caregiver needs”, “Functional status and mobility issues”, “Illness understanding”, and “COPD care complexities”.

• Patients prioritized functional and mobility issues, especially related to supplemental oxygen challenges.

• Intervention mapping informed refinement of our EPIC telephonic COPD nurse coaching intervention.

Why does this paper matter?

Patient-centered interventions for older adults with COPD must account for their prioritized challenges and seek diverse perspectives to enrich the intervention.