- Email: [email protected]
Defining patient-centered recovery after critical illness – A qualitative study
Journal Pre-proof Defining patient-centered recovery after critical illness – A qualitative study
Lynda M. Thurston, Sharyn L. Milnes, Carol L. Hodgson, Danielle E. Berkovic, Darshini R. Ayton, Theodore J. Iwashyna, Neil R. Orford PII:
S0883-9441(19)31743-5
DOI:
https://doi.org/10.1016/j.jcrc.2020.01.028
Reference:
YJCRC 53486
To appear in:
Journal of Critical Care
Please cite this article as: L.M. Thurston, S.L. Milnes, C.L. Hodgson, et al., Defining patient-centered recovery after critical illness – A qualitative study, Journal of Critical Care(2019), https://doi.org/10.1016/j.jcrc.2020.01.028
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© 2019 Published by Elsevier.
Journal Pre-proof Defining Patient-Centered Recovery after Critical Illness – A Qualitative Study Lynda M Thurston MBChB, PGDipOMG, MPH, FACEM [email protected]
1
Sharyn L Milnes MBioethics, GDEd, GCCCN, GCHE, RN [email protected] Carol L Hodgson PhD FACP BAppSc(PT), [email protected] Danielle E Berkovic BHSC danielle.berkovic@monas h.edu
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Darshini R Ayton PhD, MPH, BBiomedSci [email protected] Theodore J Iwashyna MD, PhD [email protected]
1,2
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3,5,6
1,2,3
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Neil R Orford MBBS, FCICM, PGDipEcho, PhD [email protected]
Authors Affiliations
University Hospital Geelong, Barwon Health, Geelong, VIC, Australia
2.
School of Medicine, Deakin University, Geelong, VIC, Australia
3.
Australian and New Zealand Intensive Care Research Centre, Department of Epidemiology and
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Preventive Medicine, Monash University, Melbourne, VIC, Australia Department of Physiotherapy, Alfred Hospital, Melbourne, VIC, Australia
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Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA
6.
Center for Clinical Management Research, VA Ann Arbor Health System, Ann Arbor, MI, USA
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Care
Unit,
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Corresponding Author: Lynda Thurston. Telephone +61342151723. Fax +61342151761. Intensive University
Hospital
Geelong,
Ryrie
St,
Geelong,
Victoria,
3220,
Australia
E-mail [email protected] CRediT Statement
Lynda Thurston: Methodology, Formal analysis, Investigation, Writing – Original Draft, Review and Editing. Sharyn Milnes: Conceptualization, Methodology, Validation, Formal analysis, Writing – Review and Editing. Carol Hodgson: Conceptualization, Methodology, Writing – Review and Editing. Danielle Berkovic: Formal analysis. Darshini Ayton: Formal analysis, Data curation. Theodore Iwashyna: Conceptualization, Methodology. Neil Orford: Conceptualization, Methodology, Validation, Writing – Review and Editing, Supervision, Project administration.
Journal Pre-proof ABSTRACT
Purpose: To explore perspectives of adult critical illness survivors and identify important aspects to care and recovery.
Materials and Methods: A descriptive, qualitative study of adult survivors of prolonged critical illness, sixmonths after Intensive Care Unit (ICU) discharge, using semi-structured interviews and thematic analysis. The study was undertaken in an academic, tertiary, regional hospital in Victoria, Australia.
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Results: Thirty-five patients participated in the study. Most were male (69%) with median age 64 years. Admissions were predominantly medical (51%), followed by cardiothoracic (26%) and general surgical (23%).
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Median ICU and hospital length of stay were 5 and 17 days respectively. Qualitative analysis revealed two key
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theme categories, recovery status and care experience. Three recovery states were identified based on physical and neuropsychological recovery. Care experiences varied across recovery states, including care encounters,
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communication, support and impact on family and friends, and use of community health services.
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Conclusion: Critical illness survivors frame their recovery in terms of recovery status and care experience,
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reflecting existing qualitative domains of physical health, psychological healt h, cognitive function, social health and life satisfaction. Theme content varied with recovery status, raising the possibility that modifying care
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experiences or patient perceptions could change recovery outcomes.
Key Words: Intensive Care, Patient-centered outcomes research, Qualitative research, Recovery of function, Survivorship.
Journal Pre-proof INTRODUCTION Dynamic change is a cardinal feature of critical illness. It is dogma that any given physiologic measurement in the intensive care unit (ICU) mus t be interpreted in light of its trajectory and pattern of change. Yet early efforts to grapple with ICU recovery have emphasized cross-sectional measurement of the problem’s patients and caregivers face at any one point. These problems have been organized under the rubric of the Post-Intensive Care Syndrome (PICS) [1], encompassing physical health, psychological health, cognitive function, quality of life, and ongoing economic and social costs to families and caregivers [2-7].
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Recent quantitative work has begun to fill this gap and create trajectories of critical illness recovery over time using empirical measurement tools, with ICU survivors classified into distinct recovery groups based on mental
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and physical health impairment [2], functional dependency [8] and functional disability [3, 4, 9]. This new quantitative research has not been matched by a similar qualitative exploration of the dynamics of recovery from
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patients’ perspectives. Earlier qualitative work in ICU survivorship focused on exploring recall of ICU
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experience [10-12], subsequent review of which called for research with more focus on the whole illness recovery trajectory [13]. A recent systematic review of recovery orientated qualitative studies [5] conducted in critical illness survivors identified distinct domains of patient important outcomes, and reinforced the known
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gaps between patient perspective on recovery and standard quantitative measures [6].
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To add to the literature in this area, we conducted semi-structured interviews with survivors of critical illness, emphasizing a minimally guided opportunity for patients to tell their story and reconstruct their time since ICU. By exploring their perspectives and experiences we hoped to identify areas of importance to their recovery and how these may have shaped their self-perceived outcomes.
Journal Pre-proof METHODS Design, and Setting This descriptive qualitative study was conducted in a mixed surgical, medical, and cardiac surgical ICU in a tertiary regional hospital servicing a population of approximately 500,000 people in South Western Victoria, Australia. Ethics approval was obtained from the institutional Human Research Ethics Committee prior to study commencement.
Participants
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Adult (over 18-years of age) patients discharged from ICU in June 2016 and January 2017, requiring greater than 24-hours mechanical ventilation and surviving to six-months after ICU discharge were eligible for
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inclusion in the study. Patients excluded were non-English speaking, had cognitive impairment of an extent that prevented consent and interview, were acutely unwell, were travelers who had returned to their home country or
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were uncontactable. Potential participant lists were generated through interrogation of the ICU electronic record
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(SLIC©) and hospital electronic record at two discrete timepoints depend ent on availability of the study research doctor (LT) to perform the eligibility screen, consent process and interviews. The lists generated allowed for an expected delay for the consent process to optimize six-month interview timing. Patients who
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fulfilled eligibility criteria were then contacted via telephone by the study research doctor who introduced
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herself, gave a simple explanation of the study and asked if they were prepared to receive further information
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via post. Patients that agreed were contacted again approximately a fortnight after the initial call and given opportunity to discuss the study. Consent was explained and the ability to withdraw at any point reiterated. If the patient was willing to proceed, they were asked to return written consent by self-addressed envelope included with the postal information.
Research Team, Interview development, and Data Collection The semi-structured interview schedule was developed through a process of evidence review relating to patient centered care, followed by development of a set of questions by the investigator team (SM, CH, JI, NO). Questions were designed to be descriptive, aiming to prompt participants to “tell their story” and reduce leading bias, although partial question prompts were included to allow some replication and standardization of the interviews. Interviews were conducted by a female ICU post Fellowship Registrar (LT) who had undertaken clinical communication training, was interested in long-term patient-centered outcomes, and had no previous
Journal Pre-proof relationship with participants. Pilot interviews were conducted with two participants before revision and final interview questions agreed upon (Supplement Table 1).
Patients were given the option of doing the interview with or without a support person, over the phone or faceto-face.
Interviews
were
recorded
using
a
handheld
recording
device.
Hospital record data collected included age, sex, comorbidity data in the form of age -adjusted Charlson Comorbidity Index (ACCI) [7] and presence of life-limiting illness (LLI) [8] (Supplement Table 2), admission diagnosis, severity of illness score, mechanical ventilation duration, ICU and hospital length of stay and
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discharge destination.
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Analysis and Sample Size
Recorded interviews were de-identified, transcribed verbatim and uploaded to QSR International's NVivo 12
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software [14], a qualitative data management program. Given the absence of substantial empirical data from
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which to structure a rigid pre-hoc coding scheme or closed ended survey questions, inductive coding using open, axial and selective coding techniques was applied to the transcribed data by two qualitative researchers (DB, DA). Thematic analysis of the initial cohort of 18 analyzed interviews from December 2016 determined data
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saturation had not occurred due to the heterogeneity of the participants. A further 17 patients were interviewed
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and analyzed in June 2017, and investigator review determined saturation had been reached. Transcripts were
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not returned to participants for checking, to avoid causing repeat distress from revisiting their experiences.
Transcripts of all participants were analyzed by four investigators (DA, DB, LT, SM). Investigators fully immersed in the data, and through a process of constant comparative coding and thematic analysis, main categories were identified, then clustered into major themes and subthemes. Discussion between investigators occurred to provide discussion and feedback on credibility and validity of themes. After agreement was reached, two investigators (LT, SM) re-analyzed transcripts to establish the relationship between themes and subthemes. Results were reviewed with the coordinating researcher (NO) and consensus reached.
Journal Pre-proof RESULTS A total of 89 patients were eligible for inclusion, with 48 (54%) alive at six-months with no exclusion criteria (Figure 1). Of the 48 patients contacted for participation, 35 (73%) consented to interview. Median interview length was 18 minutes (range 6 to 38 minutes ) and timing was 6.2 months after ICU discharge (range 5 to 7.4months). The median age was 65 years [Interquartile range (IQR) 54,72], 69% were men, 20% had a preexisting life limiting illness, and 51% were medical with 49% surgical or cardiac surgical. Patients were discharged either directly home, home with hospital in the home (HITH) support, to a rehabilitation unit or
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another hospital (Table 1). By the time of interview all participants had returned home.
Two key analytical theme categories emerged from participant interviews, relating broadly to (1) recovery status
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and (2) care experience. Recovery status was described in terms of physical and neuropsychological recovery. Physical recovery included subthemes of strength, stamina, and returning to activities of daily living (ADLs),
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while neuropsychological recovery included subthemes of emotional control, cognitive function and the ability
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to construct an illness narrative. Care experience described the participants perspectives from critical illness through to time of interview, and was categorized into sub-themes of care encounters, communication,
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transitions in care, support from family and friends, and health service support.
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A model of three clear recovery states – recovered, recovering, not recovered – emerged from the participants
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description of their recovery. Physical and neuropsychological recovery themes, including most of their related subthemes, varied with recovery status. As such, further discussion of results is categorized by recovery status. The demographic characteristics and thematic analysis by recovery groups are provided in Table 2 and 3.
Journal Pre-proof
Eligible -
patients (n=89) Adult Ventilated >24 hours Survived to hospital discharge
Deceased (n = 10)
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Contacted for participation (n = 48)
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Excluded (n=31) Non-English speaking (n=4) Significant cognitive impairment (n = 5) Acutely unwell (n=3) Returned to other country (n=2) Unable to contact (n=17)
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Declined participation (n = 13)
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Enrolled (n = 35)
Figure 1: Patient Enrolment and Flow
Journal Pre-proof Table 1: Patient Demographics and Critical Care Characteristics. Vari able
Participants (n=35)
Age (years)
64.5 [54, 71.5]
Men
24 (69.0)
Co-morbidity Comorbidity Index (ACCI)
3 [2,5]
Life limiting illness (LLI)
7 (20.0)
Medical
18 (51.4)
Surgical elective
2 (5.7)
Surgical emergency
6 (17.1)
Cardiothoracic
9 (25.7)
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Admission category
66 [50.8, 78.3]
Mechanical Ventilation (hours)
71.1 [43.5, 120.4]
ICU LOS (days)
5.0 [3.0, 12.8]
Hospital LOS (days)
17.4 [8.8, 29.3]
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Apache III Score
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Discharge Destination Other hospital
7 (20.0)
15 (42.9)
Hospital in the home
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Home
7 (20.0)
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Rehabilitation unit
6 (17.1)
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1. Abbreviations: ACCI = Age-Adjusted Charlson Comorbidity Index; LLI = Life limiting illness; APACHE = Acute Physiology, Age, Chronic Health Evaluation; MV = mechanical ventilation; LOS = length of stay; HITH= Hospital in the Home; ICU = intensive care unit. 2. Data are shown as number (percentage), or median [interquartile range]
Journal Pre-proof Table 2: Participant demographics and critical care characteristics by Recovery Status
Variable
Recovered (n=10)
Recovering (n=20)
Not Recovered (n=5)
Age (years)
65 [53.8, 70]
63 [54.8, 70]
64.5 [55, 74]
Men
9 (90.0)
12 (60.0)
3 (60.0)
Comorbidity Index (ACCI)
3 [2 ,4]
4 [1.8, 5]
6 [2, 7]
Life limiting illness (LLI)
1 (10.0)
3 (15.0)
3 (60.0)
Medical
4 (40.0)
10 (50.0)
4 (80.0)
General surgical
1 (10.0)
7 (35.0)
0 (0.0)
Cardiothoracic
5 (50.0)
3 (15.0)
1 (20.0)
APACHE 3 score
64.5 [57.5, 81.3]
66.5 [50.8, 78.3]
62 [45, 72.3]
Mechanical Ventilation (hours)
102.9 [40.2, 196.6]
ICU LOS (days)
8.8 [2.8, 13.6]
Hospital LOS (days)
21.8 [18, 28.5]
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69.4 [46.5, 101.7]
70.9 [50.4, 90.6]
4.7 [3.1, 9.2]
5.0 [2.9, 7.7]
16.3 [7.7, 36.9]
13 [11, 19.8]
3 (15.0)
3 (60.0)
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Discharge Destination
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Admission category
1 (10.0)
Rehabilitation unit
3 (30.0)
2 (10.0)
2 (40.0)
Home
5 (50.0)
10 (50.0)
0 (0.0)
1 (10.0)
5 (25.0)
0 (0.0)
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Home with HITH
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Other hospital
1. Abbreviations: ACCI = Age-Adjusted Charlson Comorbidity Index; LLI = Life limiting illness; APACHE = Acute Physiology, Age, Chronic Health Evaluation; MV = mechanical ventilation; LOS = length of stay; HITH= Hospital in the Home; ICU = intensive care unit. 2. Data are shown as number (percentage), or median [interquartile range]
Journal Pre-proof Recovery Status
Not Recovered “I can’t do anything” The not recovered group had the highest proportion of patients admitted with a medical diagnosis (80%), LLI (60%), and highest ACCI (6 [IQR 2,7]). Duration of mechanical ventilation (71 hours [IQR 50, 91 hours]) and ICU length of stay (5 days [IQR 3, 8 days]) were similar to the recovering group, whereas hospital len gth of stay (13 days [IQR 11, 20 days]) was shortest of all trajectories. No-one in this group was discharged directly home,
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going to rehabilitation units or regional hospitals instead.
Physical Recovery
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Participants described deterioration of functional abilities following critical illness, overwhelming fatigue, weakness, pain, and inability to return to previous activities.
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“I can’t do anything. You know, I’m too weak to do anything. So, I can’t vacuum, I can’t make a bed, I
because I’m debilitated.” (27)
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can’t do things like that… I was such an active person before I got ill, it’s …really, really depressing
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“I have slowed down quite a lot… I use a mobility scooter now to go to the shops and back again. I
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used to walk down and, you know, bring my shopping bag and backpack…. But I don’t do so much
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walking as I would like”. (21)
“I get a lot of dizziness and weakness and feel like dropping dead sometimes” (23)
Neuropsychological Recovery Participants discussed feelings of fear of relapse and consequent restriction of activities. They spoke of emotional and psychological burden including emotional lability, depression, anxiety, time spent considering mortality, distressing memories of hallucinations and ongoing difficulty separating reality from non-reality. “I pretty much like staying indoors, staying out of shopping centers, avoiding all that kind of stuff… I’m still scared to death I’m going to die.” (27)
Care Experience
Journal Pre-proof This group reported negative care experiences relating primarily to poor communication , including lack of explanation of disease events or progress during illness and recovery, poor or absent transition of care between the primary hospital and discharge destination health services, general practitioners, regional hospitals and specialists. “When I came out the coma, I felt that no one was telling me why, not the nurses or the doctors wanted to go into it with me. So, it’s like I’m just left in the dark. Which made it worse. I didn’t know what’s real and what’s reality” (27)
reported feeling like a burden on friends, family and society.
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This group were less engaged in rehabilitation, more likely to have poor social supports in place, and
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“I feel like a burden upon people. To the point where I actually asked my case worker… I said to
I’m not a burden on anyone.” (27)
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Recovering “I’m getting there”
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her look, I probably aren’t going to get better, probably easier to just go into a nursing home. So,
The recovering group had a similar comorbidity prevalence (LLI 15% and ACCI 4 [IQR 2,5]) to the recovered
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group, and the highest proportion of general surgical patients (35%). Duration of mechanical ventilation (69
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hours [IQR 47, 102 hours]), ICU length of stay (5 days [IQR 3, 9 days]) and hospital length of stay (16 days
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[IQR 8, 37 days]) were similar to the not recovered group. This group had the highest proportion of patients discharged home (75%) from hospital.
Physical Recovery
Participants described functional limitations, however they reported gradual improvements in their physical strength and pain, with ongoing fatigue and reduced energy levels. Most had not returned to previous social functioning and involvement in prior hobbies, and those workin g were on reduced hours or workloads. “I’m getting there. But I notice I’ll do something, and I’ll think wow, this is hard work, it never used to be! I’m not doing half of much as I used to be doing…. I don’t know whether I don’t want to or I don’t think I can.” (10)
Journal Pre-proof “It’s just getting better and better…just got to take my time. I’ve put some driving restrictions on myself, I don’t go driving long distances, just short distances at the moment.… I’m back cooking again, and things like that.” (33)
Neuropsychological Recovery Emotional lability and cognitive impairment were described by several participants, resulting in reduced confidence and reluctance to return to previous activities. Participants described difficulty understanding the nature and severity of their illness, and delayed distress with awareness of how sick or close to death
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they had been. ““as soon as I felt pressured I started collapsing, and mentally I just couldn’t handle any
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pressure at all. In any shape or form. That’s probably been the most difficult part to deal with”
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(25)
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“I wasn’t aware that I was out for all those days and all that stuff until I got home. And then I’m kind of finding it out and that was very, very frustrating and made me feel very negative about
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Care Experience
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myself” (14)
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The reports of care experience were predominantly positive, with negative experiences relating primarily to communication and transitions of care between the acute hospital and primary care provider. “Just the way sometimes doctors treat you could be a bit more tactful…. he comes in and stands at the door and like announces it to the whole of the ICU unit. Not that everyone’s well enough to hear, but a little bit more tact and decorum as far as I’m concerned. It’s a tender subject with me now.” (14)
“[My GP] had to ring the hospital to find out exactly what happened and what was going on with me…You’re asking me to go to my GP and get all of this done, and then there’s no [communication] with them.” (14)
Journal Pre-proof This group reported strong supports with most having a partner or family caring for them both in-hospital and once home, and most engaged with community-based health services post discharge. “[my daughter] was very good to me, she came up and wiped cream up where I was all chafed and washed me and done lots of stuff that the nurses didn’t seem to have the time for, so.” (15)
“I’ve had excellent care from the district nurses who’ve been absolutely amazing and I’ve been back and forward into hospital quite a bit.” (1)
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Recovered “I feel quite normal” The recovered group were predominantly men (90%), with the highest proportion of cardiac surgical admissions
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(50%), lowest proportion of medical admissions (40%) patients with LLI (10%), and lowest ACCI (3 [IQR 2,4]). Duration of mechanical ventilation (103 hours [IQR 40, 197 hours]), ICU length of stay (9 days [IQR 3,
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14 days]) and hospital length of stay (22 days [IQR 19, 29 days]) were the longest in this group. Sixty percent
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were discharged home from hospital, independently or with support.
Physical Recovery
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Participants categorized as ‘recovered’ tended to state they were “back to normal” (24). They described initial
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frustration with physical recovery and inability to perform daily activities, followed by active involvement in
normal.
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rehabilitation, dedication to recovery goals, increased energy levels, and considered themselves back to a new
“The rehab has been wonderful, you go there, and you think some of the exercises don’t seem to be anything at all, but they really are. And bring you on in leaps and bounds. So yeah , I’m doing really well now.” (3)
“And I suppose you’re concerned about how far your recovery will go and what you’re going to be left with. But I feel quite normal which is fantastic, because stories from other people have not been as positive.” (8)
Neuropsychological Recovery
Journal Pre-proof Most participants reported a positive emotional reaction to admission and recovery, with subsequent improving cognitive function. Some expressed initial shock when realizing how sick they had been, but with help of family and services they had developed an understanding and acceptance of their illness journey. “I’m thankful I can do everything, I’m thankful I can look after my grandchildren, I’m thankful I can look after my husband. So, life’s good.” (10)
Care Experience
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None of the recovered participants reported negative care experiences, despite some reports of vulnerability with care transitions.
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“You wake up and you’re recovering, you’ve found all this stuff that happened to you and gosh, you can’t even move your own legs let alone anything else. And then you’re moved to the ward and have all
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the issues with the ward. And then from there moved to rehab, you just feel a little bit insecure and a
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bit emotional.” (26)
This group had strong community support, including family and health services. Family were spoken of with
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supported by friends and community.
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gratitude, with many identifying a strong supportive spouse. Those who lived alone accepted care and were well
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“Without [my wife] I’d have been, you know, wouldn’t have survived the whole ordeal. Yeah, so she’s been my rock, and she’s, um, yeah, amazing.” (6)
Journal Pre-proof Table 3: Overview of patient experience with associated example quotes categorized by recovery status (excluding quotes already in body of text) Physical Recovery
Recovered
Recovering
Not Recovered
Strength
“I’d lost all my muscle tone… that wasted away a fair bit. I lost about 20 kilos but I’ve put most of that back on” (6)
“I can’t do any heavy work on it anymore. I’ve just lost the strength in my arms and my shoulders.” (33)
“there’s a few projects here that I think I can do, the trouble is that my whole body, she doesn’t like doing them, you know” (9)
Stamina
“So, I’ve put the weight back on, I’m fit enough to walk around the golf course, so um, I’m happy about that” (8)
“I am getting better, like I can feel I am… I just don’t want to wear myself out either if you know what I mean. I’m quite happy to walk and do all that kind of stuff, but I don’t want to go out and chop up wood” (20)
“Now that I’ve built up my strength I can do everything I could before” (24)
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Activities of daily living
“I’m back dancing now, that’s another thing too. That’s a fantastic thing. My husband and I do ballroom dancing. Just for fun, we don’t do competition or anything like that. So, you know, I’ve been able to do that, so those sorts of goals that I wanted to reach I’ve reached, which is fantastic” (26)
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“I haven’t got the initial strength that I used to have... I don’t have that stamina that I had a year ago” (14) “I can sort of get up and do housework, you know. You’d have to restrict things. Have a shower and then you sit down for a minute. Then you make the bed and then you sit down for a minute” (35)
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“But I certainly haven’t got the get up and go, the get up and go has got up and went let me tell you.” (2) “Well having no energy, you know. Wanting to do something and I just couldn’t do it” (2)
“I have got no activity whatsoever. I can’t do anything that I used to be able to… I just feel like I’m paralyzed” (27)
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Neuropsychological Recovery Emotional wellbeing
Recovered
Recovering
Not Recovered
“I would occasionally get weepy but it wasn’t, it was only if I thought of what had happened” (10)
“Sometimes I just lose my emotions and start crying. I’m not sure why.” (25)
“I am going through the terrors and stuff like that” (27)
“a bit of depression and emotion. The first…four weeks I think I was very weak… I was emotionally stressed” (14)
“I’ve still got that fear that I’m not going to make it. For some reason, I don’t know whether it was because I was in the coma, it’s just scared the crap out of me” (27)
“being grateful for what you have, and being incredibly grateful for being fit and healthy and normal” (26)
Cognitive function
“I’d start getting a bit brain foggy… you can feel that fatigue that you get in your brain that you then find it hard to think… you know, because you’re dealing with money and all that sort of stuff” (26)
Illness narrative
“I didn’t know that I had actually died. I didn’t find that out until a bit after I got home. But I knew that at that stage after I’d died, a few days later my family were called in to say goodbye. So, I knew that much. That um, yeah, it was just sort of trying to get my head around that sort of thing” (26)
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“I can’t work… can’t organize things that I need. And that includes all those things that I just can’t concentrate sufficiently on. That I regularly used to be able to… paying bills and all those sort of things I really struggle with now” (30) “Like nobody ever took me through… what actually happened to me. So, when I actually got home, different people would say things to me and I would get all really shocked and worried. Because I didn’t even know I’d had things.” (15)
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“The strange thing is, because my memory’s gone, so has my ability to spell words. So, I can’t even understand my own writing or my own words” (27) “I’ve never known what happened to me. Nobody’s told me” (2) “I was just left to deal with it by myself. And I haven’t dealt with it good at all. And I’m still not dealing with it” (27)
Journal Pre-proof Care Experience
Recovered
Recovering
Not Recovered
Care encounters
“Apart from the food, all the attention, the nurses really looked after me and I was really pleased with that. So was my partner, she was wrapped with the girls. Some of them made themselves feel very welcome, she was always up to date with what was going on and kept up a good rapport with a couple of them, so that was really good” (8)
“Probably the only thing I sort of felt was when the surgeons came around and did their rounds, they were a little bit loud with their vocals, they sort of let everyone in the room know what was going on with you and I’m a fairly private person and hadn’t told anyone what was wrong with me in there. But they sort of were very, very vocal so anyone could have heard what was wrong with you” (35)
“It was debilitating that I couldn’t do anything. I couldn’t move any part of my body apart from my head. I couldn’t talk, couldn’t nothing. I remember myself getting frustrated because nobody could understand what I was trying to tell them. And as I said, I thought this doctor was out to kill me. And I was scared to death, absolutely scared to death” (27)
“I left ICU and just had a bit of a chat [with the Liaison nurse]. That was quite good because I was very emotional. I think it was just the physical stress that made me emotional… I thought it was very good to have somebody like that to talk to” (24)
“It was communication, it was like – they told you things, but they don’t actually cover the whole – it’s not like when you get home they say please can you make an appointment with your doctor. You know, and all that. And nothing that was told to me and that was an issue with me. As you can gather with the Warfarin and my other medication, so yeah.” (14)
“Look if they sent me to another doctor I’d scream. I’ve just stopped. As I go to them and they do nothing, they say make up an appointment, come back in 3 months, come back in 3 months. They don’t do anything. So, I’ve just stopped making the next appointment. I’ve given that up” (2)
“I went down to the general ward. And I couldn’t sleep there, I just wanted to go home. There was no point in me staying in hospital because I just couldn’t sleep” (20)
“I asked my doctor [about what the infection was] and she couldn’t, it wasn’t on my file, they hadn’t sent through exactly what it was. And when I’d seen the lung doctors, they didn’t know what it was” (27)
Communication
Transitions in care
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“that was already daunting because I could hardly stand, let alone – you feel very vulnerable because you can’t really move properly or walk. so, going from security and having someone there, to boom on the ward, you’ve got to try and ring a buzz and wait for them” (26)
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“I should have had the thickest file you’ve ever seen, but I don’t think it got out to the GP and to the [local] heart specialist... or even not through [the local] hospital” (30)
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Care Experience
Recovered
Recovering
Not Recovered
Support from family and friends
“I’ve put [my wife] through enough, she had the whole time off from work, from everything. She was in every day, yeah she took annual leave, [carers] leave and she had some... long service offer as well. She literally had off from when I went in … ‘til July. Just tended to me, you know?... I certainly got a lot of attention, on both sides” (8)
“I’ve never really had a relationship with my brother, but he’s sort of buckled up and he sort of just helps me out” (22)
“my partner… I tried to talk to him but he tried to brush it off. He didn’t want to hear about it type thing. And, like a few other people, it’s like, not really interested” (27)
“I get meals on wheels here too. So that’s helped a lot because my diet wasn’t all that good. See I live by myself, and, so I had to rely on a bit of takeaway food, that sort of thing. But now that’s pretty much stopped because I get meals on wheels.” (12)
“the first month I had Hospital in the Home, so they came and saw me every day, everyone was wonderful” (17)
Health service support
“[my wife] was very good to me but very hard on me, so that was good. The first few days I was just struggling to even move my own arms. And she didn’t cut me a break. She says you’ve got to move yourself. And it was the best advice I got.” (25)
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“I’ve had lots of support from the stoma nurses at the hospital. Stephan has been wonderful there. I had a bit of trouble with lacerations at the start and you know, getting the right sized bag. They’ve been fantastic getting me in for last minute appointments to get things sorted” (35)
“I just feel a burden on people. Because I can’t handle people doing anything for me. It’s hard to accept that I can’t do it.” (27)
“I’ve been to dieticians and all they are is theories. There’s no action, they’re too young. There’s no experience in them… they have got all the knowledge but they have no people knowledge.” (21) “At first I wouldn’t even let workers come and see me, but you know, because I just thought no, I can do this by myself. And then I realized no, I can’t by myself. So, I had to let them come in and do what they needed to do.” (27)
Journal Pre-proof DISCUSSION
Key findings Six-months after critical illness, survivors frame their experience in terms of recovery status and care experiences, reflecting existing qualitative domains of physical health, psychological health, cognitive function, social health and satisfaction of life. In this study adult survivors of critical illness described three recovery states, framed by physical recovery, neuropsychological recovery and care experience. In addition, survivors described patient experience themes that varied between recovery groups. Those who described themselves as
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recovered more commonly identified positive care experiences, an acceptance of their illness journey, strong support from a spouse, friends or the community and dedication to goals of recovery includ ing active
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involvement in rehabilitation. Demographics also varied, with more recovered participants being male, post surgical, lacking LLI, but having surprisingly longer lengths of stay. The reason for these findings can only be
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hypothesized in this type of study. Perhaps longer stays lead to greater staff investment and improved discharge
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care, the sex discrepancy may be related to differing rates of critical illness myopathy and polyneuropathy, or
Relation to previous literature
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underlying societal gender roles effecting support on d ischarge.
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The qualitative analytical themes identified in this study were consistent with domains identified in the
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PROMIS framework (Patient-Reported Outcome Measurement Information System) [15], developed by the US National Institute of Health as a framework of healthcare domains for patient -centered outcomes. These include psychological health, physical health, cognitive function, social health (relationships with surrogates and society, ability to participate in work and hobbies that bring pleasure or sense of purpose), and global satisfaction of life (positive and negative emotional response to illness and recovery ). Although these have been reported in previous ICU survivorship research [5, 16-20], the organization into patient perceived recovery patterns is unique.
The description of recovery trajectory over time has begun to emerge in quantitative ICU survivor res earch. Brown et al described 4 distinct subtypes in a cohort of 645 Acute Respiratory Distress Syndrome (ARDS) survivors based on severity of physical and psychological health outcomes, and associated with baseline health, sex, ethnicity, other risk factors, but not ARDS severity [2]. In comparison Herridge et al classified 391 ARDS
Journal Pre-proof survivors in the RECOVER program into 4 groups of functional dependency by age and ICU length of stay [21]. In the general ICU population, Ferrante et al have described long -term functional disability trajectory in elderly ICU patients, the association between pre- and post-ICU trajectory, and potentially modifiable factors including hearing and vision impairment, body mass index, and functional self-efficacy with recovery trajectory [3, 4]. Understanding the relationship between measured trajectories and patient -reported recovery patterns would add an important component to ICU survivorship models.
This study reinforces the conceptual framework of PICS [1, 22-28], and the recognition of gaps between patient-
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reported qualitative outcomes and outcomes measured using current quantitative tools . Physical health, psychological health, and cognitive function are represented in both qualitative and quantitative domains of
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critical illness survivorship [3, 5, 6, 8, 21] and emerged as themes in this study. This study confirmed the importance to survivors of social health and satisfaction with life. However, these domains are difficult to
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measure using quantitative outcome tools, such as the Short Form 36 Survey (SF-36) [29], Hospital Anxiety and
Assessment Schedule 2.0 (WHODAS) [32].
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Depression Score (HADS) [30], EuroQol-5D (EQ5D) [31], and World Health Organization Disability
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Finally, this study reinforced the importance of care experience to ICU survivors . Previous cross-sectional and
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qualitative ICU survivor studies from around the world describe this. Creating a compelling picture of the
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impact of change in personality, appearance, residence, relationships, the sense of burden, gratitude, the impact of delusions, fatigue, loss of concentration and confidence, boredom, dehumanization, and the importance of transitions, milestones, and goal-setting and support needs [6, 10-13, 15, 17, 33-35]. A recent review of qualitative literature also confirms the importance of support requirements when recovering from critical illness [36]. This study builds on the reporting of patient experience and adds patterns th at vary with recovery status. This raises the possibility of modifying care experience or patient perception to change recovery outcome.
Study Implications Our study implies patients perceive recovery after critical illness according to common patterns of physical and neuropsychological wellbeing, as well as experience of care. Patient important outcomes of physical health, psychological health, cognitive health, social health, and life satisfaction are consistent with current recovery frameworks. The difference and importance of care experience by recovery status, including communication,
Journal Pre-proof understanding illness narrative, and family and community support provides an opportunity to explore the relationship between patient, illness, care experience, supports, and subsequent recovery.
Strengths and limitations The strengths of our study include the heterogenous cohort of ICU survivors, continuation of interviews to thematic saturation, and open interview format designed to illicit genuine p atient-driven themes. Limitations include the single-center nature of the study which limits its generalizability. It is worth mentioning that at the time this study was conducted there were no ICU specific discharge supports available to the participants, such
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as use of ICU diaries, follow up clinics, counselling or support groups. Participants excluded due to inability to perform the interview, to be contacted, or those who declined to participate may represent cohorts with different
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outcomes and experience. Prospective enrollment was not deemed achievable due to unforeseen availability of the study research doctor and expected high mortality and dropout rates. By interviewing participants at a single
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time point, it is possible we missed changes in perception of recovery over time.
CONCLUSIONS
Six-months after critical illness, patients perceive three recovery states. Outcome domains included physical
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health, neuropsychological wellbeing, social health, and satisfaction with life. Experience of care, inc luding
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communication and behavior of health professionals, transition of care issues, surrogate and health support
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systems, and understanding of illness narrative were important to patients. Both outcomes and experience varied with perceived recovery status.
Declarations of Interest: None
Sources of Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Acknowledgements The authors would like to thank the intensive care patients and their families who participated in this study. We would also like to thank the ICU research and project staff, Tania Elderkin, Alison Bone and Gerry Keely who helped with elements of recruitment, document review and patient care.
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Journal Pre-proof HIGHLIGHTS:
Outcomes and experience of care vary depending on critical illness survivors self-perceived recovery status.
Those who see themselves as recovered more commonly identified positive care experiences, acceptance of their illness journey, strong spousal and community support and dedication to goals of recovery. Differences found in recovery groups outcomes and experience suggest an opportunity to
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explore the relationship between patient, illness, care experience, supports, and subsequent
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recovery.
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Lynda M. Thurston, Sharyn L. Milnes, Carol L. Hodgson, Danielle E. Berkovic, Darshini R. Ayton, Theodore J. Iwashyna, Neil R. Orford PII:
S0883-9441(19)31743-5
DOI:
https://doi.org/10.1016/j.jcrc.2020.01.028
Reference:
YJCRC 53486
To appear in:
Journal of Critical Care
Please cite this article as: L.M. Thurston, S.L. Milnes, C.L. Hodgson, et al., Defining patient-centered recovery after critical illness – A qualitative study, Journal of Critical Care(2019), https://doi.org/10.1016/j.jcrc.2020.01.028
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
© 2019 Published by Elsevier.
Journal Pre-proof Defining Patient-Centered Recovery after Critical Illness – A Qualitative Study Lynda M Thurston MBChB, PGDipOMG, MPH, FACEM [email protected]
1
Sharyn L Milnes MBioethics, GDEd, GCCCN, GCHE, RN [email protected] Carol L Hodgson PhD FACP BAppSc(PT), [email protected] Danielle E Berkovic BHSC danielle.berkovic@monas h.edu
3,4
3
Darshini R Ayton PhD, MPH, BBiomedSci [email protected] Theodore J Iwashyna MD, PhD [email protected]
1,2
3
3,5,6
1,2,3
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Neil R Orford MBBS, FCICM, PGDipEcho, PhD [email protected]
Authors Affiliations
University Hospital Geelong, Barwon Health, Geelong, VIC, Australia
2.
School of Medicine, Deakin University, Geelong, VIC, Australia
3.
Australian and New Zealand Intensive Care Research Centre, Department of Epidemiology and
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Preventive Medicine, Monash University, Melbourne, VIC, Australia Department of Physiotherapy, Alfred Hospital, Melbourne, VIC, Australia
5.
Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA
6.
Center for Clinical Management Research, VA Ann Arbor Health System, Ann Arbor, MI, USA
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4.
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Unit,
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Corresponding Author: Lynda Thurston. Telephone +61342151723. Fax +61342151761. Intensive University
Hospital
Geelong,
Ryrie
St,
Geelong,
Victoria,
3220,
Australia
E-mail [email protected] CRediT Statement
Lynda Thurston: Methodology, Formal analysis, Investigation, Writing – Original Draft, Review and Editing. Sharyn Milnes: Conceptualization, Methodology, Validation, Formal analysis, Writing – Review and Editing. Carol Hodgson: Conceptualization, Methodology, Writing – Review and Editing. Danielle Berkovic: Formal analysis. Darshini Ayton: Formal analysis, Data curation. Theodore Iwashyna: Conceptualization, Methodology. Neil Orford: Conceptualization, Methodology, Validation, Writing – Review and Editing, Supervision, Project administration.
Journal Pre-proof ABSTRACT
Purpose: To explore perspectives of adult critical illness survivors and identify important aspects to care and recovery.
Materials and Methods: A descriptive, qualitative study of adult survivors of prolonged critical illness, sixmonths after Intensive Care Unit (ICU) discharge, using semi-structured interviews and thematic analysis. The study was undertaken in an academic, tertiary, regional hospital in Victoria, Australia.
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Results: Thirty-five patients participated in the study. Most were male (69%) with median age 64 years. Admissions were predominantly medical (51%), followed by cardiothoracic (26%) and general surgical (23%).
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Median ICU and hospital length of stay were 5 and 17 days respectively. Qualitative analysis revealed two key
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theme categories, recovery status and care experience. Three recovery states were identified based on physical and neuropsychological recovery. Care experiences varied across recovery states, including care encounters,
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communication, support and impact on family and friends, and use of community health services.
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Conclusion: Critical illness survivors frame their recovery in terms of recovery status and care experience,
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reflecting existing qualitative domains of physical health, psychological healt h, cognitive function, social health and life satisfaction. Theme content varied with recovery status, raising the possibility that modifying care
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experiences or patient perceptions could change recovery outcomes.
Key Words: Intensive Care, Patient-centered outcomes research, Qualitative research, Recovery of function, Survivorship.
Journal Pre-proof INTRODUCTION Dynamic change is a cardinal feature of critical illness. It is dogma that any given physiologic measurement in the intensive care unit (ICU) mus t be interpreted in light of its trajectory and pattern of change. Yet early efforts to grapple with ICU recovery have emphasized cross-sectional measurement of the problem’s patients and caregivers face at any one point. These problems have been organized under the rubric of the Post-Intensive Care Syndrome (PICS) [1], encompassing physical health, psychological health, cognitive function, quality of life, and ongoing economic and social costs to families and caregivers [2-7].
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Recent quantitative work has begun to fill this gap and create trajectories of critical illness recovery over time using empirical measurement tools, with ICU survivors classified into distinct recovery groups based on mental
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and physical health impairment [2], functional dependency [8] and functional disability [3, 4, 9]. This new quantitative research has not been matched by a similar qualitative exploration of the dynamics of recovery from
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patients’ perspectives. Earlier qualitative work in ICU survivorship focused on exploring recall of ICU
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experience [10-12], subsequent review of which called for research with more focus on the whole illness recovery trajectory [13]. A recent systematic review of recovery orientated qualitative studies [5] conducted in critical illness survivors identified distinct domains of patient important outcomes, and reinforced the known
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gaps between patient perspective on recovery and standard quantitative measures [6].
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To add to the literature in this area, we conducted semi-structured interviews with survivors of critical illness, emphasizing a minimally guided opportunity for patients to tell their story and reconstruct their time since ICU. By exploring their perspectives and experiences we hoped to identify areas of importance to their recovery and how these may have shaped their self-perceived outcomes.
Journal Pre-proof METHODS Design, and Setting This descriptive qualitative study was conducted in a mixed surgical, medical, and cardiac surgical ICU in a tertiary regional hospital servicing a population of approximately 500,000 people in South Western Victoria, Australia. Ethics approval was obtained from the institutional Human Research Ethics Committee prior to study commencement.
Participants
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Adult (over 18-years of age) patients discharged from ICU in June 2016 and January 2017, requiring greater than 24-hours mechanical ventilation and surviving to six-months after ICU discharge were eligible for
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inclusion in the study. Patients excluded were non-English speaking, had cognitive impairment of an extent that prevented consent and interview, were acutely unwell, were travelers who had returned to their home country or
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were uncontactable. Potential participant lists were generated through interrogation of the ICU electronic record
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(SLIC©) and hospital electronic record at two discrete timepoints depend ent on availability of the study research doctor (LT) to perform the eligibility screen, consent process and interviews. The lists generated allowed for an expected delay for the consent process to optimize six-month interview timing. Patients who
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fulfilled eligibility criteria were then contacted via telephone by the study research doctor who introduced
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herself, gave a simple explanation of the study and asked if they were prepared to receive further information
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via post. Patients that agreed were contacted again approximately a fortnight after the initial call and given opportunity to discuss the study. Consent was explained and the ability to withdraw at any point reiterated. If the patient was willing to proceed, they were asked to return written consent by self-addressed envelope included with the postal information.
Research Team, Interview development, and Data Collection The semi-structured interview schedule was developed through a process of evidence review relating to patient centered care, followed by development of a set of questions by the investigator team (SM, CH, JI, NO). Questions were designed to be descriptive, aiming to prompt participants to “tell their story” and reduce leading bias, although partial question prompts were included to allow some replication and standardization of the interviews. Interviews were conducted by a female ICU post Fellowship Registrar (LT) who had undertaken clinical communication training, was interested in long-term patient-centered outcomes, and had no previous
Journal Pre-proof relationship with participants. Pilot interviews were conducted with two participants before revision and final interview questions agreed upon (Supplement Table 1).
Patients were given the option of doing the interview with or without a support person, over the phone or faceto-face.
Interviews
were
recorded
using
a
handheld
recording
device.
Hospital record data collected included age, sex, comorbidity data in the form of age -adjusted Charlson Comorbidity Index (ACCI) [7] and presence of life-limiting illness (LLI) [8] (Supplement Table 2), admission diagnosis, severity of illness score, mechanical ventilation duration, ICU and hospital length of stay and
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discharge destination.
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Analysis and Sample Size
Recorded interviews were de-identified, transcribed verbatim and uploaded to QSR International's NVivo 12
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software [14], a qualitative data management program. Given the absence of substantial empirical data from
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which to structure a rigid pre-hoc coding scheme or closed ended survey questions, inductive coding using open, axial and selective coding techniques was applied to the transcribed data by two qualitative researchers (DB, DA). Thematic analysis of the initial cohort of 18 analyzed interviews from December 2016 determined data
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saturation had not occurred due to the heterogeneity of the participants. A further 17 patients were interviewed
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and analyzed in June 2017, and investigator review determined saturation had been reached. Transcripts were
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not returned to participants for checking, to avoid causing repeat distress from revisiting their experiences.
Transcripts of all participants were analyzed by four investigators (DA, DB, LT, SM). Investigators fully immersed in the data, and through a process of constant comparative coding and thematic analysis, main categories were identified, then clustered into major themes and subthemes. Discussion between investigators occurred to provide discussion and feedback on credibility and validity of themes. After agreement was reached, two investigators (LT, SM) re-analyzed transcripts to establish the relationship between themes and subthemes. Results were reviewed with the coordinating researcher (NO) and consensus reached.
Journal Pre-proof RESULTS A total of 89 patients were eligible for inclusion, with 48 (54%) alive at six-months with no exclusion criteria (Figure 1). Of the 48 patients contacted for participation, 35 (73%) consented to interview. Median interview length was 18 minutes (range 6 to 38 minutes ) and timing was 6.2 months after ICU discharge (range 5 to 7.4months). The median age was 65 years [Interquartile range (IQR) 54,72], 69% were men, 20% had a preexisting life limiting illness, and 51% were medical with 49% surgical or cardiac surgical. Patients were discharged either directly home, home with hospital in the home (HITH) support, to a rehabilitation unit or
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another hospital (Table 1). By the time of interview all participants had returned home.
Two key analytical theme categories emerged from participant interviews, relating broadly to (1) recovery status
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and (2) care experience. Recovery status was described in terms of physical and neuropsychological recovery. Physical recovery included subthemes of strength, stamina, and returning to activities of daily living (ADLs),
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while neuropsychological recovery included subthemes of emotional control, cognitive function and the ability
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to construct an illness narrative. Care experience described the participants perspectives from critical illness through to time of interview, and was categorized into sub-themes of care encounters, communication,
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transitions in care, support from family and friends, and health service support.
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A model of three clear recovery states – recovered, recovering, not recovered – emerged from the participants
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description of their recovery. Physical and neuropsychological recovery themes, including most of their related subthemes, varied with recovery status. As such, further discussion of results is categorized by recovery status. The demographic characteristics and thematic analysis by recovery groups are provided in Table 2 and 3.
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Eligible -
patients (n=89) Adult Ventilated >24 hours Survived to hospital discharge
Deceased (n = 10)
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Contacted for participation (n = 48)
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Excluded (n=31) Non-English speaking (n=4) Significant cognitive impairment (n = 5) Acutely unwell (n=3) Returned to other country (n=2) Unable to contact (n=17)
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Declined participation (n = 13)
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Enrolled (n = 35)
Figure 1: Patient Enrolment and Flow
Journal Pre-proof Table 1: Patient Demographics and Critical Care Characteristics. Vari able
Participants (n=35)
Age (years)
64.5 [54, 71.5]
Men
24 (69.0)
Co-morbidity Comorbidity Index (ACCI)
3 [2,5]
Life limiting illness (LLI)
7 (20.0)
Medical
18 (51.4)
Surgical elective
2 (5.7)
Surgical emergency
6 (17.1)
Cardiothoracic
9 (25.7)
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Admission category
66 [50.8, 78.3]
Mechanical Ventilation (hours)
71.1 [43.5, 120.4]
ICU LOS (days)
5.0 [3.0, 12.8]
Hospital LOS (days)
17.4 [8.8, 29.3]
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Apache III Score
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Discharge Destination Other hospital
7 (20.0)
15 (42.9)
Hospital in the home
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Home
7 (20.0)
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Rehabilitation unit
6 (17.1)
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1. Abbreviations: ACCI = Age-Adjusted Charlson Comorbidity Index; LLI = Life limiting illness; APACHE = Acute Physiology, Age, Chronic Health Evaluation; MV = mechanical ventilation; LOS = length of stay; HITH= Hospital in the Home; ICU = intensive care unit. 2. Data are shown as number (percentage), or median [interquartile range]
Journal Pre-proof Table 2: Participant demographics and critical care characteristics by Recovery Status
Variable
Recovered (n=10)
Recovering (n=20)
Not Recovered (n=5)
Age (years)
65 [53.8, 70]
63 [54.8, 70]
64.5 [55, 74]
Men
9 (90.0)
12 (60.0)
3 (60.0)
Comorbidity Index (ACCI)
3 [2 ,4]
4 [1.8, 5]
6 [2, 7]
Life limiting illness (LLI)
1 (10.0)
3 (15.0)
3 (60.0)
Medical
4 (40.0)
10 (50.0)
4 (80.0)
General surgical
1 (10.0)
7 (35.0)
0 (0.0)
Cardiothoracic
5 (50.0)
3 (15.0)
1 (20.0)
APACHE 3 score
64.5 [57.5, 81.3]
66.5 [50.8, 78.3]
62 [45, 72.3]
Mechanical Ventilation (hours)
102.9 [40.2, 196.6]
ICU LOS (days)
8.8 [2.8, 13.6]
Hospital LOS (days)
21.8 [18, 28.5]
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69.4 [46.5, 101.7]
70.9 [50.4, 90.6]
4.7 [3.1, 9.2]
5.0 [2.9, 7.7]
16.3 [7.7, 36.9]
13 [11, 19.8]
3 (15.0)
3 (60.0)
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Discharge Destination
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Admission category
1 (10.0)
Rehabilitation unit
3 (30.0)
2 (10.0)
2 (40.0)
Home
5 (50.0)
10 (50.0)
0 (0.0)
1 (10.0)
5 (25.0)
0 (0.0)
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Home with HITH
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Other hospital
1. Abbreviations: ACCI = Age-Adjusted Charlson Comorbidity Index; LLI = Life limiting illness; APACHE = Acute Physiology, Age, Chronic Health Evaluation; MV = mechanical ventilation; LOS = length of stay; HITH= Hospital in the Home; ICU = intensive care unit. 2. Data are shown as number (percentage), or median [interquartile range]
Journal Pre-proof Recovery Status
Not Recovered “I can’t do anything” The not recovered group had the highest proportion of patients admitted with a medical diagnosis (80%), LLI (60%), and highest ACCI (6 [IQR 2,7]). Duration of mechanical ventilation (71 hours [IQR 50, 91 hours]) and ICU length of stay (5 days [IQR 3, 8 days]) were similar to the recovering group, whereas hospital len gth of stay (13 days [IQR 11, 20 days]) was shortest of all trajectories. No-one in this group was discharged directly home,
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going to rehabilitation units or regional hospitals instead.
Physical Recovery
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Participants described deterioration of functional abilities following critical illness, overwhelming fatigue, weakness, pain, and inability to return to previous activities.
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“I can’t do anything. You know, I’m too weak to do anything. So, I can’t vacuum, I can’t make a bed, I
because I’m debilitated.” (27)
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can’t do things like that… I was such an active person before I got ill, it’s …really, really depressing
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“I have slowed down quite a lot… I use a mobility scooter now to go to the shops and back again. I
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used to walk down and, you know, bring my shopping bag and backpack…. But I don’t do so much
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walking as I would like”. (21)
“I get a lot of dizziness and weakness and feel like dropping dead sometimes” (23)
Neuropsychological Recovery Participants discussed feelings of fear of relapse and consequent restriction of activities. They spoke of emotional and psychological burden including emotional lability, depression, anxiety, time spent considering mortality, distressing memories of hallucinations and ongoing difficulty separating reality from non-reality. “I pretty much like staying indoors, staying out of shopping centers, avoiding all that kind of stuff… I’m still scared to death I’m going to die.” (27)
Care Experience
Journal Pre-proof This group reported negative care experiences relating primarily to poor communication , including lack of explanation of disease events or progress during illness and recovery, poor or absent transition of care between the primary hospital and discharge destination health services, general practitioners, regional hospitals and specialists. “When I came out the coma, I felt that no one was telling me why, not the nurses or the doctors wanted to go into it with me. So, it’s like I’m just left in the dark. Which made it worse. I didn’t know what’s real and what’s reality” (27)
reported feeling like a burden on friends, family and society.
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This group were less engaged in rehabilitation, more likely to have poor social supports in place, and
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“I feel like a burden upon people. To the point where I actually asked my case worker… I said to
I’m not a burden on anyone.” (27)
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Recovering “I’m getting there”
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her look, I probably aren’t going to get better, probably easier to just go into a nursing home. So,
The recovering group had a similar comorbidity prevalence (LLI 15% and ACCI 4 [IQR 2,5]) to the recovered
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group, and the highest proportion of general surgical patients (35%). Duration of mechanical ventilation (69
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hours [IQR 47, 102 hours]), ICU length of stay (5 days [IQR 3, 9 days]) and hospital length of stay (16 days
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[IQR 8, 37 days]) were similar to the not recovered group. This group had the highest proportion of patients discharged home (75%) from hospital.
Physical Recovery
Participants described functional limitations, however they reported gradual improvements in their physical strength and pain, with ongoing fatigue and reduced energy levels. Most had not returned to previous social functioning and involvement in prior hobbies, and those workin g were on reduced hours or workloads. “I’m getting there. But I notice I’ll do something, and I’ll think wow, this is hard work, it never used to be! I’m not doing half of much as I used to be doing…. I don’t know whether I don’t want to or I don’t think I can.” (10)
Journal Pre-proof “It’s just getting better and better…just got to take my time. I’ve put some driving restrictions on myself, I don’t go driving long distances, just short distances at the moment.… I’m back cooking again, and things like that.” (33)
Neuropsychological Recovery Emotional lability and cognitive impairment were described by several participants, resulting in reduced confidence and reluctance to return to previous activities. Participants described difficulty understanding the nature and severity of their illness, and delayed distress with awareness of how sick or close to death
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they had been. ““as soon as I felt pressured I started collapsing, and mentally I just couldn’t handle any
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pressure at all. In any shape or form. That’s probably been the most difficult part to deal with”
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(25)
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“I wasn’t aware that I was out for all those days and all that stuff until I got home. And then I’m kind of finding it out and that was very, very frustrating and made me feel very negative about
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Care Experience
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myself” (14)
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The reports of care experience were predominantly positive, with negative experiences relating primarily to communication and transitions of care between the acute hospital and primary care provider. “Just the way sometimes doctors treat you could be a bit more tactful…. he comes in and stands at the door and like announces it to the whole of the ICU unit. Not that everyone’s well enough to hear, but a little bit more tact and decorum as far as I’m concerned. It’s a tender subject with me now.” (14)
“[My GP] had to ring the hospital to find out exactly what happened and what was going on with me…You’re asking me to go to my GP and get all of this done, and then there’s no [communication] with them.” (14)
Journal Pre-proof This group reported strong supports with most having a partner or family caring for them both in-hospital and once home, and most engaged with community-based health services post discharge. “[my daughter] was very good to me, she came up and wiped cream up where I was all chafed and washed me and done lots of stuff that the nurses didn’t seem to have the time for, so.” (15)
“I’ve had excellent care from the district nurses who’ve been absolutely amazing and I’ve been back and forward into hospital quite a bit.” (1)
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Recovered “I feel quite normal” The recovered group were predominantly men (90%), with the highest proportion of cardiac surgical admissions
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(50%), lowest proportion of medical admissions (40%) patients with LLI (10%), and lowest ACCI (3 [IQR 2,4]). Duration of mechanical ventilation (103 hours [IQR 40, 197 hours]), ICU length of stay (9 days [IQR 3,
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14 days]) and hospital length of stay (22 days [IQR 19, 29 days]) were the longest in this group. Sixty percent
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were discharged home from hospital, independently or with support.
Physical Recovery
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Participants categorized as ‘recovered’ tended to state they were “back to normal” (24). They described initial
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frustration with physical recovery and inability to perform daily activities, followed by active involvement in
normal.
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rehabilitation, dedication to recovery goals, increased energy levels, and considered themselves back to a new
“The rehab has been wonderful, you go there, and you think some of the exercises don’t seem to be anything at all, but they really are. And bring you on in leaps and bounds. So yeah , I’m doing really well now.” (3)
“And I suppose you’re concerned about how far your recovery will go and what you’re going to be left with. But I feel quite normal which is fantastic, because stories from other people have not been as positive.” (8)
Neuropsychological Recovery
Journal Pre-proof Most participants reported a positive emotional reaction to admission and recovery, with subsequent improving cognitive function. Some expressed initial shock when realizing how sick they had been, but with help of family and services they had developed an understanding and acceptance of their illness journey. “I’m thankful I can do everything, I’m thankful I can look after my grandchildren, I’m thankful I can look after my husband. So, life’s good.” (10)
Care Experience
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None of the recovered participants reported negative care experiences, despite some reports of vulnerability with care transitions.
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“You wake up and you’re recovering, you’ve found all this stuff that happened to you and gosh, you can’t even move your own legs let alone anything else. And then you’re moved to the ward and have all
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the issues with the ward. And then from there moved to rehab, you just feel a little bit insecure and a
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bit emotional.” (26)
This group had strong community support, including family and health services. Family were spoken of with
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supported by friends and community.
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gratitude, with many identifying a strong supportive spouse. Those who lived alone accepted care and were well
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“Without [my wife] I’d have been, you know, wouldn’t have survived the whole ordeal. Yeah, so she’s been my rock, and she’s, um, yeah, amazing.” (6)
Journal Pre-proof Table 3: Overview of patient experience with associated example quotes categorized by recovery status (excluding quotes already in body of text) Physical Recovery
Recovered
Recovering
Not Recovered
Strength
“I’d lost all my muscle tone… that wasted away a fair bit. I lost about 20 kilos but I’ve put most of that back on” (6)
“I can’t do any heavy work on it anymore. I’ve just lost the strength in my arms and my shoulders.” (33)
“there’s a few projects here that I think I can do, the trouble is that my whole body, she doesn’t like doing them, you know” (9)
Stamina
“So, I’ve put the weight back on, I’m fit enough to walk around the golf course, so um, I’m happy about that” (8)
“I am getting better, like I can feel I am… I just don’t want to wear myself out either if you know what I mean. I’m quite happy to walk and do all that kind of stuff, but I don’t want to go out and chop up wood” (20)
“Now that I’ve built up my strength I can do everything I could before” (24)
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Activities of daily living
“I’m back dancing now, that’s another thing too. That’s a fantastic thing. My husband and I do ballroom dancing. Just for fun, we don’t do competition or anything like that. So, you know, I’ve been able to do that, so those sorts of goals that I wanted to reach I’ve reached, which is fantastic” (26)
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“I haven’t got the initial strength that I used to have... I don’t have that stamina that I had a year ago” (14) “I can sort of get up and do housework, you know. You’d have to restrict things. Have a shower and then you sit down for a minute. Then you make the bed and then you sit down for a minute” (35)
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“But I certainly haven’t got the get up and go, the get up and go has got up and went let me tell you.” (2) “Well having no energy, you know. Wanting to do something and I just couldn’t do it” (2)
“I have got no activity whatsoever. I can’t do anything that I used to be able to… I just feel like I’m paralyzed” (27)
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Neuropsychological Recovery Emotional wellbeing
Recovered
Recovering
Not Recovered
“I would occasionally get weepy but it wasn’t, it was only if I thought of what had happened” (10)
“Sometimes I just lose my emotions and start crying. I’m not sure why.” (25)
“I am going through the terrors and stuff like that” (27)
“a bit of depression and emotion. The first…four weeks I think I was very weak… I was emotionally stressed” (14)
“I’ve still got that fear that I’m not going to make it. For some reason, I don’t know whether it was because I was in the coma, it’s just scared the crap out of me” (27)
“being grateful for what you have, and being incredibly grateful for being fit and healthy and normal” (26)
Cognitive function
“I’d start getting a bit brain foggy… you can feel that fatigue that you get in your brain that you then find it hard to think… you know, because you’re dealing with money and all that sort of stuff” (26)
Illness narrative
“I didn’t know that I had actually died. I didn’t find that out until a bit after I got home. But I knew that at that stage after I’d died, a few days later my family were called in to say goodbye. So, I knew that much. That um, yeah, it was just sort of trying to get my head around that sort of thing” (26)
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“I can’t work… can’t organize things that I need. And that includes all those things that I just can’t concentrate sufficiently on. That I regularly used to be able to… paying bills and all those sort of things I really struggle with now” (30) “Like nobody ever took me through… what actually happened to me. So, when I actually got home, different people would say things to me and I would get all really shocked and worried. Because I didn’t even know I’d had things.” (15)
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“The strange thing is, because my memory’s gone, so has my ability to spell words. So, I can’t even understand my own writing or my own words” (27) “I’ve never known what happened to me. Nobody’s told me” (2) “I was just left to deal with it by myself. And I haven’t dealt with it good at all. And I’m still not dealing with it” (27)
Journal Pre-proof Care Experience
Recovered
Recovering
Not Recovered
Care encounters
“Apart from the food, all the attention, the nurses really looked after me and I was really pleased with that. So was my partner, she was wrapped with the girls. Some of them made themselves feel very welcome, she was always up to date with what was going on and kept up a good rapport with a couple of them, so that was really good” (8)
“Probably the only thing I sort of felt was when the surgeons came around and did their rounds, they were a little bit loud with their vocals, they sort of let everyone in the room know what was going on with you and I’m a fairly private person and hadn’t told anyone what was wrong with me in there. But they sort of were very, very vocal so anyone could have heard what was wrong with you” (35)
“It was debilitating that I couldn’t do anything. I couldn’t move any part of my body apart from my head. I couldn’t talk, couldn’t nothing. I remember myself getting frustrated because nobody could understand what I was trying to tell them. And as I said, I thought this doctor was out to kill me. And I was scared to death, absolutely scared to death” (27)
“I left ICU and just had a bit of a chat [with the Liaison nurse]. That was quite good because I was very emotional. I think it was just the physical stress that made me emotional… I thought it was very good to have somebody like that to talk to” (24)
“It was communication, it was like – they told you things, but they don’t actually cover the whole – it’s not like when you get home they say please can you make an appointment with your doctor. You know, and all that. And nothing that was told to me and that was an issue with me. As you can gather with the Warfarin and my other medication, so yeah.” (14)
“Look if they sent me to another doctor I’d scream. I’ve just stopped. As I go to them and they do nothing, they say make up an appointment, come back in 3 months, come back in 3 months. They don’t do anything. So, I’ve just stopped making the next appointment. I’ve given that up” (2)
“I went down to the general ward. And I couldn’t sleep there, I just wanted to go home. There was no point in me staying in hospital because I just couldn’t sleep” (20)
“I asked my doctor [about what the infection was] and she couldn’t, it wasn’t on my file, they hadn’t sent through exactly what it was. And when I’d seen the lung doctors, they didn’t know what it was” (27)
Communication
Transitions in care
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“that was already daunting because I could hardly stand, let alone – you feel very vulnerable because you can’t really move properly or walk. so, going from security and having someone there, to boom on the ward, you’ve got to try and ring a buzz and wait for them” (26)
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“I should have had the thickest file you’ve ever seen, but I don’t think it got out to the GP and to the [local] heart specialist... or even not through [the local] hospital” (30)
Journal Pre-proof
Care Experience
Recovered
Recovering
Not Recovered
Support from family and friends
“I’ve put [my wife] through enough, she had the whole time off from work, from everything. She was in every day, yeah she took annual leave, [carers] leave and she had some... long service offer as well. She literally had off from when I went in … ‘til July. Just tended to me, you know?... I certainly got a lot of attention, on both sides” (8)
“I’ve never really had a relationship with my brother, but he’s sort of buckled up and he sort of just helps me out” (22)
“my partner… I tried to talk to him but he tried to brush it off. He didn’t want to hear about it type thing. And, like a few other people, it’s like, not really interested” (27)
“I get meals on wheels here too. So that’s helped a lot because my diet wasn’t all that good. See I live by myself, and, so I had to rely on a bit of takeaway food, that sort of thing. But now that’s pretty much stopped because I get meals on wheels.” (12)
“the first month I had Hospital in the Home, so they came and saw me every day, everyone was wonderful” (17)
Health service support
“[my wife] was very good to me but very hard on me, so that was good. The first few days I was just struggling to even move my own arms. And she didn’t cut me a break. She says you’ve got to move yourself. And it was the best advice I got.” (25)
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“I’ve had lots of support from the stoma nurses at the hospital. Stephan has been wonderful there. I had a bit of trouble with lacerations at the start and you know, getting the right sized bag. They’ve been fantastic getting me in for last minute appointments to get things sorted” (35)
“I just feel a burden on people. Because I can’t handle people doing anything for me. It’s hard to accept that I can’t do it.” (27)
“I’ve been to dieticians and all they are is theories. There’s no action, they’re too young. There’s no experience in them… they have got all the knowledge but they have no people knowledge.” (21) “At first I wouldn’t even let workers come and see me, but you know, because I just thought no, I can do this by myself. And then I realized no, I can’t by myself. So, I had to let them come in and do what they needed to do.” (27)
Journal Pre-proof DISCUSSION
Key findings Six-months after critical illness, survivors frame their experience in terms of recovery status and care experiences, reflecting existing qualitative domains of physical health, psychological health, cognitive function, social health and satisfaction of life. In this study adult survivors of critical illness described three recovery states, framed by physical recovery, neuropsychological recovery and care experience. In addition, survivors described patient experience themes that varied between recovery groups. Those who described themselves as
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recovered more commonly identified positive care experiences, an acceptance of their illness journey, strong support from a spouse, friends or the community and dedication to goals of recovery includ ing active
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involvement in rehabilitation. Demographics also varied, with more recovered participants being male, post surgical, lacking LLI, but having surprisingly longer lengths of stay. The reason for these findings can only be
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hypothesized in this type of study. Perhaps longer stays lead to greater staff investment and improved discharge
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care, the sex discrepancy may be related to differing rates of critical illness myopathy and polyneuropathy, or
Relation to previous literature
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underlying societal gender roles effecting support on d ischarge.
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The qualitative analytical themes identified in this study were consistent with domains identified in the
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PROMIS framework (Patient-Reported Outcome Measurement Information System) [15], developed by the US National Institute of Health as a framework of healthcare domains for patient -centered outcomes. These include psychological health, physical health, cognitive function, social health (relationships with surrogates and society, ability to participate in work and hobbies that bring pleasure or sense of purpose), and global satisfaction of life (positive and negative emotional response to illness and recovery ). Although these have been reported in previous ICU survivorship research [5, 16-20], the organization into patient perceived recovery patterns is unique.
The description of recovery trajectory over time has begun to emerge in quantitative ICU survivor res earch. Brown et al described 4 distinct subtypes in a cohort of 645 Acute Respiratory Distress Syndrome (ARDS) survivors based on severity of physical and psychological health outcomes, and associated with baseline health, sex, ethnicity, other risk factors, but not ARDS severity [2]. In comparison Herridge et al classified 391 ARDS
Journal Pre-proof survivors in the RECOVER program into 4 groups of functional dependency by age and ICU length of stay [21]. In the general ICU population, Ferrante et al have described long -term functional disability trajectory in elderly ICU patients, the association between pre- and post-ICU trajectory, and potentially modifiable factors including hearing and vision impairment, body mass index, and functional self-efficacy with recovery trajectory [3, 4]. Understanding the relationship between measured trajectories and patient -reported recovery patterns would add an important component to ICU survivorship models.
This study reinforces the conceptual framework of PICS [1, 22-28], and the recognition of gaps between patient-
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reported qualitative outcomes and outcomes measured using current quantitative tools . Physical health, psychological health, and cognitive function are represented in both qualitative and quantitative domains of
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critical illness survivorship [3, 5, 6, 8, 21] and emerged as themes in this study. This study confirmed the importance to survivors of social health and satisfaction with life. However, these domains are difficult to
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measure using quantitative outcome tools, such as the Short Form 36 Survey (SF-36) [29], Hospital Anxiety and
Assessment Schedule 2.0 (WHODAS) [32].
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Depression Score (HADS) [30], EuroQol-5D (EQ5D) [31], and World Health Organization Disability
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Finally, this study reinforced the importance of care experience to ICU survivors . Previous cross-sectional and
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qualitative ICU survivor studies from around the world describe this. Creating a compelling picture of the
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impact of change in personality, appearance, residence, relationships, the sense of burden, gratitude, the impact of delusions, fatigue, loss of concentration and confidence, boredom, dehumanization, and the importance of transitions, milestones, and goal-setting and support needs [6, 10-13, 15, 17, 33-35]. A recent review of qualitative literature also confirms the importance of support requirements when recovering from critical illness [36]. This study builds on the reporting of patient experience and adds patterns th at vary with recovery status. This raises the possibility of modifying care experience or patient perception to change recovery outcome.
Study Implications Our study implies patients perceive recovery after critical illness according to common patterns of physical and neuropsychological wellbeing, as well as experience of care. Patient important outcomes of physical health, psychological health, cognitive health, social health, and life satisfaction are consistent with current recovery frameworks. The difference and importance of care experience by recovery status, including communication,
Journal Pre-proof understanding illness narrative, and family and community support provides an opportunity to explore the relationship between patient, illness, care experience, supports, and subsequent recovery.
Strengths and limitations The strengths of our study include the heterogenous cohort of ICU survivors, continuation of interviews to thematic saturation, and open interview format designed to illicit genuine p atient-driven themes. Limitations include the single-center nature of the study which limits its generalizability. It is worth mentioning that at the time this study was conducted there were no ICU specific discharge supports available to the participants, such
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as use of ICU diaries, follow up clinics, counselling or support groups. Participants excluded due to inability to perform the interview, to be contacted, or those who declined to participate may represent cohorts with different
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outcomes and experience. Prospective enrollment was not deemed achievable due to unforeseen availability of the study research doctor and expected high mortality and dropout rates. By interviewing participants at a single
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time point, it is possible we missed changes in perception of recovery over time.
CONCLUSIONS
Six-months after critical illness, patients perceive three recovery states. Outcome domains included physical
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health, neuropsychological wellbeing, social health, and satisfaction with life. Experience of care, inc luding
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communication and behavior of health professionals, transition of care issues, surrogate and health support
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systems, and understanding of illness narrative were important to patients. Both outcomes and experience varied with perceived recovery status.
Declarations of Interest: None
Sources of Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Acknowledgements The authors would like to thank the intensive care patients and their families who participated in this study. We would also like to thank the ICU research and project staff, Tania Elderkin, Alison Bone and Gerry Keely who helped with elements of recruitment, document review and patient care.
Journal Pre-proof References
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[17]
[18]
[19] [20]
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Outcomes and experience of care vary depending on critical illness survivors self-perceived recovery status.
Those who see themselves as recovered more commonly identified positive care experiences, acceptance of their illness journey, strong spousal and community support and dedication to goals of recovery. Differences found in recovery groups outcomes and experience suggest an opportunity to
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explore the relationship between patient, illness, care experience, supports, and subsequent
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