Patients’ Adaptations after Acute Respiratory Distress Syndrome: A Qualitative Study

Abstract

Background:

Many patients confront physical, cognitive, and emotional problems after acute respiratory distress syndrome (ARDS). No proven therapies exist to address these problems and many patients and families manage new disability and recovery with little formal support. Eliciting patients’ adaptations to problems following their ARDS hospitalization may help identify opportunities to improve recovery.

Objectives:

To explore how patients adapted to physical, cognitive, and emotional changes brought about or exacerbated by their ARDS hospitalization.

Methods:

Semi-structured interviews were conducted following patients’ hospitalization as an ancillary study to a multi-center RCT among mechanically ventilated ARDS patients. Consecutive surviving patients were recruited who were English-speaking, consented to follow-up, and were randomized between 11/12/2017 and 4/5/2018 (N=79). Patients were interviewed 9–16 months post-randomization.

Results:

46/79 (58%) eligible ARDS survivors participated; their median age was 58 (IQR 48, 63). All patients reported strategies to address physical, emotional, and/or cognitive problems that arose following their ARDS hospitalization. For physical and cognitive problems, patients reported accommodative strategies aimed at adapting to new disabilities and recuperative strategies focused on recovering previous ability. For emotional issues, there was not a clear distinction between accommodative- and recuperative-focused strategies. Social support and previous familiarity with the healthcare system helped patients generate and utilize many strategies. 31/46 patients reported at least one persistent problem for which they had not identified an acceptable adaptation.

Conclusions:

Patients report employing varied strategies to manage problems after ARDS, but more work is needed to identify and disseminate effective strategies to patients and their families.

INTRODUCTION

Survivors of Acute Respiratory Distress Syndrome (ARDS) and mechanical ventilation experience persistent physical limitations, cognitive impairments, and emotional difficulties.^1–3 Despite strength and pulmonary function recovery, over half of patients still report decreases in physical functioning two years after ARDS.^4,5 Estimates of cognitive impairment at one year range from 25 to 78%, including issues with memory, executive function, and verbal fluency.^6–8 Depression, anxiety, and post-traumatic stress disorder (PTSD) are common and long-lasting; approximately 25% of survivors report PTSD 5 years after ARDS.^4,9

Yet there are no proven therapies to prevent or systematically treat these problems.^10,11 Many patients and families navigate life after ARDS on their own. Patients’ and families’ reports have helped identify the problems ARDS survivors face,^12–14 and what services they utilize or report needing.¹⁵ Understanding how they adapt to problems and what solutions or resources they draw upon to address disability may reveal opportunities to improve recovery after ARDS.

This study elicited patients’ adaptations to ARDS-related changes by interviewing survivors 9–16 months after diagnosis. We explored how patients adapted to physical, cognitive, and emotional changes brought about or exacerbated by their hospitalization. We used semi-structured interviews to capture the breadth of patient strategies and to identify unexpected adaptations and resources patients used to address disability after ARDS.

METHODS

Sampling and Data Collection

Semi-structured interviews were conducted with patients in the Reevaluation Of Systemic Early Neuromuscular Blockade (ROSE) trial.¹⁶ ROSE was a multi-site randomized trial examining use of a 48-hour early continuous infusion of cisatracurium with concurrent deep sedation or usual care approach with lighter sedation and no routine neuromuscular blockade. ROSE found no differences in mortality or patient-centered outcomes. We approached all English-speaking, surviving patients who were randomized between 11/12/2017 and 4/5/2018, consented to long-term survey follow-up, and completed either the 3- or 6-month survey (N=79). Patients were mailed a letter and contacted by telephone for recruitment. Respondents received $10. This was approved by the Vanderbilt University Medical Center Institutional Review Board (IRB) as central IRB for this NIH multicenter network.

Telephone interviews were conducted by K.H., a qualitative sociologist. Two other team members took notes. We drew on the National Health and Aging Trends Study (NHATS) model of disability and sense-making theory to develop the interview guide (see Appendix A for additional information and guide).^17,18 Interviews were recorded and transcribed. We pilot-tested the interview guide among a similar group of critically ill patients.¹⁹

Data Analysis

We used open and directed approaches to identify patterns in how patients addressed disability and recovery following ARDS (see Appendix A).^20,21 K.H. and C.S. independently open-coded each transcript and then compared interpretations to refine codes. K.H., C.S., T.J.I., and C.L.H. then discussed emerging patterns and refined the codebook and interview guide. K.H. and C.S. continued coding the remaining transcripts independently, discussing and resolving discrepancies. After consensus, coded transcripts were uploaded into NVivo, a qualitative analysis software. We identified no new codes in the last 12 interviews, suggesting data saturation.²² Code reports were created for review and themes identified reflected key aspects of the NHATS disability model, as well as Freedman’s conceptualization of both rehabilitative and accommodative adaptation after critical illness.^23,24

RESULTS

79 ROSE patients were alive, eligible, and contacted for inclusion; 46 agreed to participate, 27 were not reached and 6 declined. Interviews averaged 32 minutes in length (13–57 minutes). Table 1 presents background characteristics of participants; interview participants were generally similar in illness severity and demographics to the broader sample of eligible ROSE patients (see Appendix B).

Table 1:

Patients in Interview Sample

Characteristics	Value a
Age, mean (range), y	55 (20–84)
Sex
Male	29 (61)
Female	17 (39)
Race
White	32 (70)
Black	4 (9)
Asian, American Indian, or Alaska Native	3 (7)
Not Reported	7 (15)
Ethnicity
Hispanic or Latino	4 (9)
Non-Hispanic/ Latino	41 (89)
Not Reported	1 (2)
Geographic Region
West Coast (6 sites)	15 (33)
Mountain West (7 sites)	12 (26)
Midwest (3 sites)	6 (13)
South (3 sites)	5 (11)
Northeast (3 sites)	8 (17)
HS degree or higher	45 (98)
Enrolled in Medicare	17 (37)
Primary cause of lung injury
Pneumonia	32 (70)
Aspiration	7 (15)
Nonpulmonary Sepsis	3 (7)
Other Causes	4 (9)
Assessments and measurements
APACHE III score, mean b	98.00
Total SOFA score, mean c	7.59
Tidal volume - ml/kg of predicted body weight, mean	6.06
FIO2, mean	0.77
Inspiratory plateau pressure -- cm of water, mean	25.67
PEEP-- cm of water, mean	12.62
Pao2:FIO2, mean	100.14
Imputed Pao2:FIO2, mean d	76.30
Treatment Status
Neuromuscular Blockade	20 (43)
Usual Care	26 (57)
Days post-randomization, median (range)	360 (288–484)
12-month Disability Score, mean (SD) e	3.38 (±2.4) (n=45)
12-month PTSS Score, mean (SD) f	34.5 ((±20.2) (n=44)
12-month MOCA Score, mean, (SD) g	23.5 (±4.4) (n=44)
12-month Living arrangement
Home independently	17 (37)
Home with help	20 (43)
Home with professional help	4 (9)
Intermediate care, rehabilitation, or nursing facility	2 (4)
Other	3 (7)

^aData are presented as number (percentage) unless otherwise noted; percentages may sum to greater than 100% due to rounding.

^bThe Acute Physiology and Chronic Health Evaluation (APACHE) III score consists of several parts including reason for ICU admission, age, sex, race, preexisting conditions, other factors; it ranges from 0 to 299 points with higher scores associated with greater mortality.

^cThe Sequential Organ Failure Assessment (SOFA) score measures respiratory, cardiovascular, hepatic, coagulatory, renal, and neurologic dysfunction; it ranges from 0–24 and higher scores are associated with increased morbidity and mortality.

^dIf an arterial blood gas was not available at randomization, the ratio was inferred from oxygen saturation as measured by pulse oximetry.

^eThe disability score ranges from 0 to 10 and is the number of 10 activities of daily living and instrumental activities of daily living (ADL/IADL) items on which the respondent or their proxy reported difficulty due to health conditions at 12 months post-randomization; scores of 4 or greater are interpretable as representing severe disability.

^fThe Post-Traumatic Stress Symptom (PTSS) score ranges from 0–70 and measures the frequency of 10 common symptoms of post-traumatic stress. A total score above 35 is considered suggestive of post-traumatic stress disorder.

^gThe Montreal Cognitive Assessment (MoCA) is a 30-question test measuring validated to measure mild cognitive impairment and dementia. A score of 25 or less is considered at-risk for impairment.

Accommodative and Recuperative Strategies

For physical and cognitive difficulties, all patients reported at least one of the following: (1) accommodative strategies, which helped them work around new disabilities; and (2) recuperative strategies, focused on recovering previous ability.

Accommodative Strategies

The most common accommodative strategy was the use of assistive devices like canes, walkers, shower chairs, or other tools to navigate physical and mobility limitations (30/46 patients, 65%). (See Table 2 for accommodative strategies.) Patients also reported relying on family to help with daily tasks, like cooking, bathing, or climbing stairs, and for transportation (19/46, 41%).

Table 2:

Patients’ Accommodative Strategies

Strategies for Physical Problems	N reporting this strategy
Assistive devices (shower chairs/bars, walkers, hand grippers, portable oxygen, etc.)	30
Rely on family for assistance/support with daily tasks	14
Rely on family for transportation	8
Navigate home differently (i.e., use 1st floor)/ change living arrangements (i.e., live with relatives)	17
Limited return to work/ Different job/ retired	15a
Formal in-home caregiver	7
Take frequent rests/breaks	6
Medical marijuana	2
Strategies for Cognitive Problems
Writing notes/making lists	8
Reminders/assistance from family	6
Assistance/adaptations at work	2

^aThree people reported returning to work part-time but later starting a full-time schedule

Female, Age 44: I had my in-laws come to stay with my daughter and husband—my mother-in-law. She had been here the whole time I was in the hospital… so, she was here [when I came home], to help with cooking and help with my daughter.

Many patients reported changes to their living environments, including navigating their homes differently, such as using only one floor, or moving, most often to live with family who could offer physical assistance (17/46, 37%). 15 patients (33%) accommodated physical limitations by returning to work part-time, changing jobs, or permanently leaving the workforce.

Female, Age 47: I have a downstairs apartment [now], just one step in the door and I’m here… It’s pretty good now. I got a walk-in shower. I have a bench seat in the shower. I’m good.

{I: What was it like before?}

Oh, it was terrible. Someone would have to get in the shower with me, get my left leg over the tub, and it was just misery. Taking the risk on falling, slipping, it was pure hell.

Patients reported accommodating cognitive issues by writing things down (8/46, 17%) and relying on family members to provide information or jog patients’ memories (6/46, 13%). Two patients reported accommodations at work, including increased supervision.

Female, Age 57: I remember some, but I don’t remember a lot. Sometimes when people tell me stuff—like do something later in the day—I forget it almost after they say it.

{I: What do you do to help yourself remember things?}

I write it down. That’s the only way I’m going to remember some stuff.

Recuperative Strategies

Recuperative strategies for physical issues were also the most commonly reported. (See Table 3 for recuperative strategies.) Most patients reported some outpatient physical or occupational therapy (32/46, 70%). Outpatient therapies were described by patients as recovery-focused, although these services often include accommodative instruction. Additional efforts to improve endurance or strength were the most common patient-initiated strategy for physical problems (18/46, 39%).

Table 3:

Patients’ Recuperative Strategies

Strategies for Physical Problems	N reporting this strategy
Formal out-patient PT/OT	32
Manage/maintain overall health (avoid illness, dietary changes, quit smoking, etc.)	17
Continue formal PT/OT exercises at home/on their own	10
Add daily tasks over time	8
Self-initiated exercises to build strength over time (did not participate in any outpatient PT/OT)	6
Continue breathing exercises	5
Walk increasing frequency or distance over time	5
Transition to less-assistive devices/support over time (ex. walker to cane, decrease oxygen levels)	3
Staying busy/ finding things to do/ having a routine	3
Avoid assistance that might cause additional decline (elevators, wheelchair, etc.)	2
Draw/ paint to build dexterity	1
See chiropractor	1
Strategies for Cognitive Problems
Solve games/puzzles (word searches, puzzles, video games, etc.)	7
Getting back into routine/daily tasks/using brain more	4
Formal outpatient therapies	2
Use memory/cognitive skills mobile or computer apps	1
Improve overall health	1
Listen to audio books he’s heard before	1

{I: Was there anything else that was difficult physically?}

Male, Age 63: Just endurance, trying to walk.

{I: How did you tackle that?}

I did it in the pool. I got a pool, so I went in the pool a lot… and just kept walking around the pool with the grandkids and stuff… it was less wear and tear on my body…

Patients sought to recover cognitive abilities using puzzles, word searches, or video games to stimulate memory and cognitive skills (7/46, 15%). Two patients described outpatient therapy to address cognitive issues.

{I: What sort of cognitive problems did you have?}

Male, Age 60: Working on basic problems, like working with my bank accounts, things like that. I made real silly errors there for a while… Logic puzzles helped a lot—Especially with the math. I’m able to do math in my head again.

Strategies for Emotional Problems

When asked how patients were dealing with the emotional problems they reported, there was no clear distinction between accommodative and recuperative focused strategies. (See Table 4 for emotional strategies.) The most common strategies to address emotional issues were talking to and receiving encouragement from family (19/46, 41%), focusing on the positive things in their lives (15/46, 33%), and seeking out formal treatment through therapy or medications (11/46, 24%).

Table 4:

Strategies for Emotional Problems

Strategies for Emotional Problems	N reporting this strategy
Emotional support/assistance from family	19
Focus on the positives/ survival	15
Talking to a therapist/counselor	11
Prayer/belief in God	11
Return home	11
Medications	9
Spending time with family/friends	7
Acceptance of limitations	7
Find distractions/ things that help patient relax	5
Finding/focusing on motivations/purpose	3
Keeping busy	3
Understanding illness	3
Self-medicate	2
Avoid thinking about hospitalization	2
Different job	1

Female, Age 62: When I first got out of the hospital, everything was challenging. I cried at everything. I got upset very easily. It was like a whole different personality for about a month.

{I: What did you do to deal with what was going on?}

I have a super good therapist that I started seeing and they switched my meds around.

Prayer and support from their faith also helped patients address emotional issues (11/46, 24%). For some respondents being hospitalized was a distinct emotional challenge and they described coming home as providing emotional relief (11/46, 24%).

Male, Age 20: I have even more faith in God and what he’s doing… I think that God is a real important part of my recovery… even though it sucked to be where I was—that’s where I was supposed to be, and I’m going to be okay.

Contextual Factors Influencing Adaptations

Contextual factors were related to strategy utilization. Social support was important in helping patients identify and facilitate strategies necessary for recovery. Patients’ family members helped them problem solve around disabilities, encouraged them throughout recovery, and sometimes coaxed patients towards formal services, especially around emotional difficulties.

Male, Age 70: They got me a new dog. [My wife] said you need a dog just so you have to get up all the time.

Male, Age 55: [My wife] was a very important advocate, both in terms of helping me keep track of medications and appointments and helping to keep me focused on recovery—keeping a positive outlook and helping me learn to live within my limitations.

Male, Age 58: When I have anxiety, sometimes I talk to somebody—sometimes I pick up the phone and call friends.

Previous familiarity with the health system also facilitated identifying strategies. Patients reported relying on their own or family members’ professional clinical training (therapists, nursing, etc.) to navigate recovery, or drawing on previous illness or injury experiences. Continuing exercises from physical therapy after formal services ended was commonly reported (10/46, 22%).

Male, Age 60: I learned a long time ago how to do acupressure and all that stuff… from my chiropractor, I learned a lot of it—I had my neck surgery in 1987… I got a lot of little pieces of paper saying do this—from my therapists, from my chiropractor.

Male, Age 68: A really close friend of mine is an RN. So, when I came home, this friend of mine made sure that I had a walker, a bath chair—that I had everything that they wanted me to have. She did my MediSet with all the medicines in it—she set all that up—I would not have been able to do that when I got home.

Persistent Problems Without Successful Adaptations

Some patients reported physical, emotional, and cognitive issues that they had not been able to adapt to or recover from; 31/46 (67%) reported at least one issue without a successful adaptation, i.e., a persistent problem. Respectively 28 (61%), 13 (28%), and 10 (22%) patients reported unremedied physical, emotional, and cognitive problems.

Female, Age 62: The hard part is I just have no energy. I mean I go to PT for an hour and a half and I come home and sleep for 3 hours, because I do not have the stamina and that’s what agitates me the most…

Male, Age 49: My thought processes seemed to have changed, where before, I could string a sentence together fairly well… Now, I found myself stuttering, trying to find the right word to fit the sentence… I’m 48 years old—I shouldn’t have that many problems with it, but right now, I feel like—what’s the word I’m looking for—it’s just hard.

When asked about addressing an ongoing problem, some patients reported they were unsure of whether services would help or felt that treatments weren’t working. Although two-thirds of patients reported participating in formal outpatient rehabilitation services, few sought additional therapy if disabilities or problems persisted after services ended. One patient reported doing physical therapy for a month, and tried to continue exercises on her own, but also voiced concern that she was still quite limited.

Female, Age 51: [Physical therapy] did come to my home. Right after, for 6 or 8 visits, and then they said I was fine. I feel like I’m kind of at a stalemate now, and I – it’s kind of depressing, like I’m not sure that I’m going to get much better than I am now. It’s hard to think of… but this may be as good as it gets.

Of the persistent problems patients reported, in only 4 instances did patients report no attempted strategies to address the issue. Thus, patients’ strategies were of unclear efficacy more often than a failure to attempt any resolution. Persistent problems were noted across every demographic group and treatment randomization status (see Appendix C for comparisons). Some strategies that patients reported may also be of limited effectiveness and potentially maladaptive. These may include avoiding thinking about their hospitalization (2/46, 4%) and self-medicating (2/46, 4%) as conscious strategies for emotional problems, or the use of medical marijuana (2/46, 4%) for physical problems.

DISCUSSION

Our study asked: what strategies do patients utilize to address disability after ARDS hospitalization? The prevalence of problems after ARDS in this sample was consistent with the published literature.^1,25 All patients reported efforts to address physical, emotional, and/or cognitive issues following ARDS. Patient-driven strategies included novel ways of managing disability and increasing progress over time as well as extensions of skills learned in structured rehabilitative services accessed earlier in their recovery. Social support and previous familiarity with the healthcare system helped patients generate and utilize many of the strategies reported. However, many patients also reported persistent problems for which they had not identified an acceptable accommodation. For the great majority of persistent problems, patients reported insufficient, rather than no strategies.

We found that patients and families were actively involved in developing self-management strategies to correct or attenuate the impact of new problems, often with modest support from the healthcare system. For some patients, familiarity with health system resources due to previous illness or chronic conditions proved beneficial;²⁶ they drew on earlier experiences and knowledge in identifying strategies and accommodations. Yet whether or not survivors had access to formal healthcare system services, most exerted agency in actively working to fill the gaps.

This active exploration by survivors and their caregivers implies that neither clinical care nor trials should assume that just because a patient was not prescribed something, nothing is being done. In either clinical or research contexts, goal-setting²⁷ and patient- and family-activation^28,29 efforts may benefit from identifying patients’ current self-management approaches. There may be a clinician role for not only prescribing new strategies, but also helping survivors select the most effective strategies and replace less effective or potentially harmful strategies. If ways can be found to identify and selectively disseminate more effective adaptations, such as through moderated peer support, that may help patients and families learn about and implement useful adaptations.³⁰

Throughout the interviews, the critical role of informal caregivers in the development of strategies was clear. This is consistent with the literature on the importance of social support.³¹ Yet after ARDS, there may be new, acute challenges for those informal caregivers. Cameron et al.³² noted most caregivers experience high levels of depressive symptoms, consistent with findings after sepsis (the most common cause of ARDS).³³ Netzer and colleagues found high levels of learned helplessness in families of patients in the ICU, which may limit their effectiveness in the early post-ICU period.^34,35 This suggests that efforts to support families during and immediately after critical illness may indirectly provide benefits to patients, and clinicians should consider supporting caregiver involvement in post-ICU follow-up and recovery.

For clinicians seeking to improve the ability of patients to function physically, these interviews emphasized the particularly potent role of assistive devices²³—yet also, their incomplete penetrance among patients. Patients’ access to assistive technologies may be dependent on the kinds of follow-up care they receive (rehabilitation therapy, pulmonary clinic, primary care visits), which clinicians can support. These interviews also emphasized the evolution of disability and both accommodative and recuperative strategies over months after ARDS, consistent with longitudinal cohort data.^1,36 Whether patients might benefit from serial evaluations by both physical and occupational therapy during recovery may warrant exploration. Certainly, many patients reported ongoing efforts to engage in self-directed exercise without clinician supervision.

For clinicians seeking to improve cognitive and behavioral functioning, fewer clear adaptations were available. Patients emphasized the importance of being home. Early supported discharge (ESD) by a skilled multi-disciplinary team, which aims to offer patients earlier hospital discharge with coordinated rehabilitation in the patient’s home, is now commonplace among stroke patients with mild to moderate disability.³⁷ For these patients, ESD reduces initial hospital length-of-stay, long-term dependency and admission to institutional care; patients are also more likely to be independent in daily activities at six months.³⁸ Some ARDS survivors described emotional and cognitive improvement upon returning home and it is possible ESD may provide similar benefits for ARDS survivors. However, it is not clear to what extent return to home causes better mental and emotional function or is a marker of such improvement. These interviews also suggest that additional research is needed for identifying effective coping strategies.

We note several limitations to our study. First, we interviewed patients; caregivers may have identified additional strategies. Given the significant role of social support we identified, caregivers may have implemented strategies that patients were not aware of and/or did not report. Second, as we relied on patients’ reports of strategies utilized, we are not able to assess their actual usage or frequency. Third, we interviewed patients with sufficient social support to have been enrolled in a randomized clinical trial, many of whom will have consent signed for that trial by a legally appointed representative. These patients may have had higher levels of social support than the 6% of patients who lacked an available surrogate when assessed for eligibility in the original trial.¹⁶ Lastly, given the exploratory nature of this project, we were not able to determine the efficacy of particular strategies.

CONCLUSIONS

Among our cohort of 46 ARDS survivors, we find patients, especially supported by their families, are engaged in a range of activities to attempt to address disability after ARDS. However, many patients still have ongoing problems and have not developed effective strategies for adapting. Patients without social support may be at greater risk. Our work suggests clinicians should consider implementing standard screening for impairments following ARDS and that future work is needed to analyze the effectiveness of patient- and family-generated strategies and accommodations, and whether their dissemination to survivors would be beneficial.