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Abstract
Objectives To explore trauma patients’ experiences of the long-term recovery pathway during 18 months following hospital discharge.
Design Longitudinal qualitative study.
Setting and participants Thirteen trauma patients with injuries associated with pain that had been interviewed 6 weeks after discharge from Oslo University Hospital in Norway, were followed up with an interview 18 months postdischarge.
Method The illness trajectory framework informed the data collection, with semistructured, in-depth interviews that were analysed thematically.
Results Compared with the subacute phase 6 weeks postdischarge, several participants reported exacerbated mental and physical health, including increased pain during 18 months following discharge. This, andalternating periods of deteriorated health status during recovery, made the pathway unpredictable. At 18 months post-discharge, participants were coping with experiences of reduced mental and physical health and socioeconomic losses. Three main themes were identified: (1) coping with persistent pain and reduced physical function, (2) experiencing mental distress without access to mental healthcare and (3) unmet needs for follow-up care. Moreover, at 18 months postdischarge, prescribed opioids were found to be easily accessible from GPs. In addition to relieving chronic pain, motivations to use opioids were to induce sleep, reduce withdrawal symptoms and relieve mental distress.
Conclusions and implications The patients’ experiences from this study establish knowledge of several challenges in the trauma population’s recovery trajectories, which may imply that subacute health status is a poor predictor of long-term outcomes. Throughout recovery, the participants struggled with physical and mental health needs without being met by the healthcare system. Therefore, it is necessary to provide long-term follow-up of trauma patients’ health status in the specialist health service based on individual needs. Additionally, to prevent long-term opioid use beyond the subacute phase, there is a need to systematically follow-up and reassess motivations and indications for continued use throughout the recovery pathway.
- TRAUMA MANAGEMENT
- Follow-Up Studies
- Chronic Pain
- PAIN MANAGEMENT
- Adult orthopaedics
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Strengths and limitations of this study
A notable strength of this study is that all participants took part in a follow-up interview at 18 months postdischarge, which provided an opportunity to reflect on the experiences that had been discussed during the first interview, to explore new perspectives and topics, and to identify changes over time.
The study sample consisted of patients with orthopaedic injuries, which limits the extent to which the findings can be generalised to trauma patients with different injuries.
All participants were recruited from one trauma centre in the Southeast region of Norway, and we cannot know to what extent their experiences reflect those of trauma patients with similar injuries in other parts of the country.
Portions of the recovery period overlapped with the COVID-19 pandemic, and it is possible that not only the trauma but also the strict contagion control measures, had an impact on the participants’ lives and experienced well-being.
Introduction
Traumatic injuries constitute a significant burden of disease and are of global public health concern.1 In 2019, injuries accounted for 12 000 daily deaths, representing 8% of global mortality.2 Despite being a leading cause of death, injuries contribute significantly to morbidity. While nearly 1.3 million people suffer a fatal outcome from road traffic accidents every year, between 20 and 50 million individuals survive and live with permanent or temporary disabilities.3 Furthermore, as medical technology and trauma system improvements have reduced trauma-related mortality,4 5 an increased interest has been directed towards injury survivors and the challenges they experience following hospital discharge.6–9
Trauma survivors frequently sustain mental and physical impairments that significantly affect their quality of life,9 10 and research has shown that more than one-third of trauma patients do not return to work 1 year after injury,11 reflecting the severe injury burden. Furthermore, longitudinal cohort studies conducted during the 3 years following injury have shown that trauma patients report a high prevalence of ongoing problems with pain, anxiety, depression, daily activities and reduced mobility and self-care.12 13
Pain is a natural and expected consequence of acute injury,14 and opioids have established efficacy in acute pain management during hospitalisation.15 Although the incidence of pain varies across studies, it has been shown that persistent pain is present up to 7 years following traumatic injury16 17 and that 20%–35% of trauma patients continue long-term opioid use following hospital discharge.18 19 Compared with the general population, these patients are at higher risk of misusing psychoactive substances, including opioids,20 and long-term opioid therapy for chronic pain increases the risk of overdose and death.21 Nevertheless, few qualitative studies have explored trauma patients’ pain management experiences or addressed the need for knowledge regarding appropriate opioid use during recovery. The published studies have identified a lack of individual follow-up and limited information about pain management, including the adverse effects of opioids and the risk of addiction.9 22–24 Still, these findings need to be explored further, and there is a need for qualitative longitudinal studies of trauma survivors’ experiences of opioid use during recovery.
Overall, injury-related mental and physical health problems, including pain, impede recovery. Physical trauma also often persists as a chronic disorder, and injury survivors are prone to face challenges during the long and complex recovery pathway,12 underscoring their long-term needs for various health services.
To improve the quality of trauma care following hospital discharge and to subsequently increase the quality of life among survivors,12 it is essential to understand what factors may influence health outcomes and how, with attention to the patterns that emerge across the recovery trajectory. There is a knowledge gap regarding trauma patients’ postdischarge experiences of long-term follow-up and persistent use of prescribed opioids, including how these experiences change over time. Although previous research has described the importance of longitudinal follow-up,13 there remains a need for qualitative longitudinal research. With this background, this study aimed to generate nuanced knowledge about the long-term recovery pathway by exploring understandings and experiences of pain, opioid use and postdischarge follow-up among trauma patients with injuries associated with pain, during the 18 months following hospital discharge.
Methodology
This longitudinal qualitative study builds on a study that explored patients’ post-trauma experiences 6 weeks after discharge from the trauma centre.9 To explore the patients’ experiences of long-term recovery and change over time, a follow-up study was conducted among the same participants at 18 months postdischarge. Figure 1 depicts the time gap between the two studies.
Time gap between study 1 and study 2.
Theoretical framework
The illness trajectory framework, initially proposed by Corbin and Strauss25 and which Halcomb and Davidson26 have applied to recovery from traumatic physical injury, provides the theoretical framework for this study. In this framework, the trauma care continuum is understood as a trajectory or illness path that consists of multiple phases, beginning when the injury occurs and continuing through the acute and stable phases of recovery. The acute phase encompasses resuscitation and critical care. Successful interventions will enable the patient to enter a stable phase, which may incorporate various medical interventions to maintain the current health status. For many survivors, the stable phase may be sustained for many years, but their health may at some point deteriorate, and they may re-enter the unstable phase, which includes health challenges and complications.
According to Halcomb and Davidson,26 movements between phases and subphases, described as daily or weekly fluctuations in health status, can be of variable duration and direction.
In this study, we explored patients’ experiences during recovery, including the trajectory’s stable and unstable phases. To do so, we engaged a longitudinal qualitative research (LQR) methodology, which aims to generate insight into how perspectives evolve over time and in relation to circumstances as they unfold.27 We used the illness trajectory framework to develop the interview guide and structure the data.28 Furthermore, using an inductive approach, the framework guided the analysis as we specifically focused on participants’' holistic experiences of health including biological, psychological, and social aspects of the trauma care experiences. As the framework emphasises both the physical manifestations and biopsychosocial impact of injury, questions regarding physical, social and psychosocial health, including experiences of loss, were included in the interview guide. The framework highlights that preinjury factors, such as risk-taking behaviour, substance use, and socioeconomic status, may affect recovery. These factors were mapped during the interviews conducted at 6 weeks postdischarge.9
Context
Study participants were recruited solely from Norway’s largest hospital, Oslo University Hospital (OUH), which treats close to 2000 trauma patients yearly29 and is the only trauma centre that meets the American College of Surgeons Level 1 trauma centre criterium.30 The hospital is situated in the South-East Health Region with a population of approximately 3.1 million. Norway has universal health coverage and is publicly funded.31 Thus, this study reflects orthopaedic patients with severe trauma experiences from the public healthcare system.
Participants and recruitment
All the included patients were 18 years of age or older, were able to consent, had suffered complex and/or severe surgical trauma and had received care from a trauma team. The inclusion criteria were as follows: one or more of the following types of injuries: (1) more than one fracture of the extremities, spine or pelvis, of which at least one of the fractures required surgical treatment; (2) isolated pelvic fracture with neurological injury (acetabulum or pelvic ring) and/or (3) isolated thoracic injury with more than two rib fractures. Participants with severe head injuries were not included in the study.
Purposive sampling was used to recruit participants who met the inclusion criteria. Potential participants were first identified during the daily trauma reporting meetings at the trauma centre. To prevent the researcher from influencing eligible participants to participate, independent nurses made the initial contact by asking permission for the researcher, who was not involved in the treatment of the patients, to provide oral and written information about the study. Sixteen patients who met the inclusion criteria were invited to participate, and 15 were enrolled (13 men and two women). However, one participant was lost to follow-up, and one could not consent, so 11 men and 2 women were included in the study after providing written informed consent. The most frequent mechanism of injury (MOI) was motor vehicle crashes, which had been survived by five participants. Three participants were injured in skiing accidents, two by a falling object, two by falling from a height and one in a sledding accident. The participants’ length of hospital stay ranged from 2 to 43 days and none of the participants required invasive ventilation support or was admitted to the intensive care unit. The included participants from the targeted trauma population had a desired variety32 of patient characteristics (eg, age, occupation, MOI, injury severity, length of hospital stay, prior experience with healthcare, premorbid health problems). Initially, a wide range of experiences and perceptions were described, and in the latter interviews, similar experiences and no new insights were added regarding the research aims. Hence, the authors reached a consensus that the sample size of 13 was adequate to reach sufficient information power and thus stopped the inclusion.33
Data collection
All participants agreed to be contacted by telephone after discharge from the trauma centre to arrange the first in-depth interview. After the first interview was conducted 6 weeks postdischarge, all participants agreed to be contacted by telephone or SMS to schedule an 18-month follow-up interview, which took place in September, October and November 2020. Author JF (PhD candidate and clinician with more than 10 years’ experience as nurse anaesthetist in trauma care) conducted the interviews, they were audio recorded and transcribed verbatim. The mean time of the interviews was 59 min (range 43–70 min) and the phone interview that lasted for 43 min was conducted during COVID-19. Independent field notes were written for all participants following the interviews to provide context and clarification and to point out elements of importance to include or improve in subsequent interviews. All interviews were conducted during the COVID-19 pandemic and due to contagion measures, 3 were conducted by telephone and 10 were performed at the participants’ residences. A thorough description of the interview approach, including general reflections on methodological and ethical challenges when conducting qualitative research during COVID-19, is described elsewhere.8
Interview guide
The interview guide was based on the findings from the interviews that were conducted 6-weeks postdischarge. It consisted of open-ended and probing questions, and individualised follow-up questions based on the first interview and each participant’s trajectory. For example, among participants who lacked a taper plan for opioids at the time of the first interview, follow-up questions regarding tapering experiences over time were asked during the second interview. The following themes were explored: experiences of pain, use of opioids, postdischarge follow-up, mental health, and quality of life, see online supplemental appendix A.
Supplemental material
Analysis
To understand the participants’ experiences of the recovery pathway, a longitudinal analysis was conducted. LQR focuses on how and why experiences change over time, with a possible focus on critical moments involved in change.27 34 This approach is thus beneficial when studying changes in health experience and behaviour over time, such as during recovery.34 35 Furthermore, the method enables an examination of cross-sectional data and patterns present within the participant sample at each time point as well as the evolving narrative of each participant in a longitudinal perspective.27
The transcripts were coded in NVIVO V.11 (Lumivero, Denver, Colorado), after which a six-step inductive thematic analysis, as described by Braun and Clarke,36 was undertaken. The primary coding was performed by author JF, who identified the codes and grouped them into broader preliminary themes, after which a summary of findings, and the preliminary codes and themes, were discussed and adjusted within the interdisciplinary team of coauthors. Thereafter, authors JF and IAH held regular meetings to reach a consensus, consisting of three overarching themes, each of which comprised several subthemes. The last step of a thematic analysis involved producing a report and providing a complete description of the themes with supporting empirical material (quotations from the study participants). The COnsolidated criteria for REporting Qualitative research (COREQ) Checklist37 was used when planning and conducting the study, and pseudonyms were used for all the participants. To determine the severity of the injuries suffered by the participants, New Injury Severity Scores (NISSs), calculated by a certified trauma registrar, were retrieved from the Norwegian National Trauma Registry and described in detail in 2021.38 The NISS is defined as the sum of the squares of the Abbreviated Injury Scale (AIS) scores of a patients three most severe AIS injuries, regardless of body region in which they occur.39
Patient and public involvement
Two patients with previous orthopaedic polytraumatic injury with long-term experience as trauma patients were involved in the planning of study design, development and testing of the interview guide for the first interview 6-week postdischarge.
Results
All participants had been involved in a traumatic accident, had suffered orthopaedic injuries and were 18 months into the recovery pathway. The mean NISS score for the study participants was 23 (range 13–29). An overview of the characteristics of the participants is presented in table 1.
Characteristics of the study participants (n=13)
Longitudinal perspective: development and change over time
The participants described the 18-month recovery period as complex and challenging. For most participants, the subacute phase that they found themselves in 6-weeks postdischarge marked the beginning of a recovery period towards regaining optimum function, increasing independence and reintegrating into the community. However, several participants experienced the recovery pathway from the subacute phase at 6 weeks postdischarge to the time of the 18-month follow-up interview as unpredictable due to alterations between improvement and periods of deteriorated health status with increased pain and reduced physical function. Seven participants had a positive development as they, 18 months following discharge, experienced an improved health status with less pain and increased physical function, compared with 6 weeks following discharge. Three experienced a negative development and reported an exacerbated health status with increased pain and reduced physical function at 18-month follow-up compared with 6 weeks. Likewise, three participants felt that their pain and physical function were unchanged from the first and last interview. It has been documented that chronic pain has a negative effect on psychosocial aspects of everyday life40 and thus, lack of improvements was interpreted as a negative development during the recovery pathway. Figure 2 illustrates the participants’ self-perceived experiences of pain during the recovery trajectory.
The participants' self-perceived experiences of pain during the recovery trajectory.
The overarching theme was that the participants were ‘coping with experiences of loss, but still struggling’. In this context, experiences of loss are linked to reduced physical and/or mental health and/or socioeconomic status following the injury. Moreover, ‘struggling’ conveys an experience of proceeding through recovery, but with difficulty.
Although there were variations in extent, all the participants experienced loss of physical, mental or socioeconomic status during recovery. Three themes, each of which comprises subthemes, were identified as contributing factors to the participants’ experiences of loss and perceptions of struggling: (1) coping with persistent pain and reduced physical function, (2) experiencing mental distress without access to mental healthcare and (3) unmet needs for follow-up care. A detailed overview of the themes and subthemes is presented in figure 3.
Themes and subthemes.
Coping with persistent pain and reduced physical function
At the time of the first interviews, 6 weeks postdischarge, all participants experienced injury-related pain of various degrees and eight participants used opioids daily. At 18 months postdischarge, 12 of the 13 participants experienced injury-related pain. There were significant variations in the pain intensity, and eight participants did not use pain medication to function in everyday life. Nonetheless, all participants had a common understanding, independent of opioid use, that persistent pain negatively affected their physical function.
Evolving problematic opioid use to cope with additional challenges during persistent pain
Throughout the 18-month recovery period, five study participants continued using opioids, two of whom reported daily use and three who used according to need. A few described a pattern of opioid use and side effects, such as changes in mood, but without reflecting on the possibility that this could indicate problematic use and the development of opioid use disorder. For example, one of the participants, who was diagnosed with chronic pain and used short and long-acting opioids during recovery, found that short-acting agents not only alleviated the pain temporarily but also experienced deteriorating mental health, in line with the duration of opioid use. Thus, the participant tried to reduce the dosages:
I am in much pain, so now I have two days a week where I take oxycodone, it helps so much, and it feels absolutely wonderful when I take them. I have been very unstable this autumn with many ups and downs in my mood, I easily cry […] That’s why I don't want to go on those medicines, it gets completely… it gets so dark… then it’s so dark, then I've stopped taking them and I've been myself again, not that I am not vulnerable and sad, but not so dark.
Although the participant understood that oxycodone contributed to feelings of depression, the possibility that these symptoms could indicate the development of opioid dependence was not considered.
Another participant, Fred, experienced hallucinations, paranoia and severe nightmares during his initial stay at the trauma centre, which he interpreted as severe side effects of the oxycodone prescribed for his pain.9 Hence, throughout recovery, he resisted oxycodone. Instead, he used codeine, which he felt he tolerated better. Although Fred did not use codeine daily, he was anxious about running out of a prescription, as he experienced that it could alleviate challenges beyond physical pain:
If we think about the addiction thing…. what I’ve been anxious about is if I’m running out of these pills… because if it’s been way too bad then I know I can take a couple of these to calm down… and there was a period when I took them when I went to bed and the doctor said it wasn’t exactly a smart practice move…. I don’t know why but at least I got to sleep enough.
Experiences of needing easy access to opioids
The common denominator among the participants who used opioids was their experiences of having easy access to the medication, which some considered important, particularly when motivated to use opioids for reasons in addition to pain. Some saw opioid access as a safety measure, some had developed strategies to ensure continuous access to prescribed opioids, and some experienced unnecessarily easy access. Andre provides an example of the latter. He had experienced severe pain during his initial stay at the trauma centre and throughout the 6-week subacute phase postdischarge, which persisted during recovery. However, at 18 months postdischarge, Andre reported a stable but reduced pain intensity. He had learnt to live with the pain and did not take opioids. Although Andre had not used opioids since the subacute phase, his electronic prescription was still active. He reflected:
No, there was very little information about it (side effects and addiction) right from the time I quit, nothing concerning tapering… Not at all… So there is probably a lot that could have been done differently. I have only read a bit online and it seems that this is one of the most common ways of becoming dependent […] I don’t know how long I could have run that race and taken those pills, because I still have a prescription for it… if I hadn’t chosen to taper off myself, I probably could have continued for quite a long time before I’d get any questions about it, because then I could just say that I’m in terrible pain-I need them.
Andre experienced that, in both the specialist and primary healthcare services in the subacute phase and during recovery, there was a lack of focus on and control over persistent opioid use, including a lack of a tapering plan and no information about opioids being addictive agents. Furthermore, his perception was that trauma survivors in recovery could easily receive opioids from their general practitioner (GP) by claiming they were suffering from pain, despite having other motives.
Helge provides another example of experiencing a need to have access to opioids but for reasons other than pain relief. Helge struggled with severe pain during recovery but did not want to use opioids because he feared dependence. However, one of his critical challenges in everyday life was insomnia. Hence, since discharging from the trauma centre, he continued using Targinique (long-acting oxycodone with naloxone), as a sleep medication. His GP kept prescribing it, and taking opioids every night had become a regular habit for Helge:
No, I’m not a big fan of pills… but I take the Targinique 5mg to sleep, then once every two months I try to sleep [without pills], and quickly find that I can’t sleep, but it’s the sleep that I struggle with […] Now I just send a message to her [the GP] […] that I must have more pills, then she sends an electronic prescription… so now it’s a bit automatic, and I think part of the reason why I don’t sleep well is that I’ve become so used to them [the pills] that they no longer have any effect […] I’ve been thinking that I feel like doubling it up, take two pills in the evening, but of course, I’m not doing that…
Concerns of exacerbated injury-related pain
During the 18-month recovery pathway, several participants had experienced periods in which their recovery stagnated or deteriorated. Such periods were experienced as a negative relapse and raised concerns about injury-related complications. Terje experienced several periods in which his recovery stagnated due to exacerbated pain, which spread progressively from the injured body part to other areas. This affected his mental health, and he had periods of sick leave during which he also did function well in daily activities. He described experiencing mental distress due to concerns about his pain and spending much time worrying about whether he had acquired injury-related complications:
Three weeks ago, it was a bit like it went the wrong way… It was hard, physically of course because I got very tired, but it was hard mentally… Because then I felt that in many ways I was going in a spiral and things got worse and the pain spread… it felt like it was going down, then it felt like it stabilized, and now I feel like I'm on my way up again… so I have to find out what is going on with this (pain), because the pain is one thing but it’s another thing to go and worry.
All participants who experienced pain described it as affecting their physical function, as physical activity often triggered and led to increased pain. Some were anxious about straining the injured body part and worsening the injury. Furthermore, several participants reported that living with pain was mentally stressful and affected their overall well-being.
Experiencing mental distress without access to mental healthcare
Deteriorated mental health due to increased pain and reduced physical function
Most participants expressed that it was challenging to live with persistent pain and reduced physical function over time, as it affected many facets of their lives, particularly their mental health. For Fred, the recovery pathway entailed several changes in his everyday life. Fred experienced a lack of improvement and struggled with severe pain. Consequently, he changed his employment to a more sedentary job and due to inactivity, he gained weight and felt less mobile. These changes affected his mental health and future outlook.
That’s what’s been the problem pretty much all the time, I’m in such excruciating pain […] Bad mood, you know, you get so tired and fed up with the whole thing… You get a lot of strange thoughts when you’re fed up, it’s like there’s no end, you get up and when you go to bed in the evening it’s like that, it’s sometimes almost like you cry when you go to bed because then the pain is so intense, also then like when you get up in the morning you’re kind of afraid to get up you can say because how is it when I put my feet on the floor now, what is happening now.
Andre provides another example of how pain not only affected his mental health, but also changed how he understood and experienced his identity. At 18 months postdischarge, he worked part-time because the pain interfered with his ability to work full-time. Pre-injury, Andre had struggled with severe depression and indulged himself in working, using it as a diversion to cope with mental difficulties. Moreover, his identity was linked to physical labour and the sense of strength he achieved through working a lot. To him, working was an important pillar of life that the injury had deprived him of. For Andre, living with long-term pain and reduced ability to work resulted in worsening symptoms of depression, which further perpetuated a negative cycle. He explained:
No, it’s quite dark… It [depression] was basically there long before that accident, but it [the accident] doesn’t help, does it… you get rushed when you’re in so much pain, then you feel like you’re working only two days a week, sort of, feeling like you’re a piece of shit, so all that kind of thing eats away at the psyche… it also eats at the sense of self […] It goes a little in periods, but I must be honest enough to say that it’s never good, it’s not… but there are periods when you feel the days go by pretty much like that, you also have periods where things are fairly dark.
Henning also experienced that his injury-related pain negatively affected his mental health. Like Andre, Henning had struggled with health challenges prior to the injury, including mental health issues. However, 3 years prior to the injury, Henning sought help from a psychologist, who he continued to meet with regularly during recovery. Although Henning received professional help, he experienced deterioration in several aspects of his health simultaneously and believed that his life situation in recovery, with the challenges it entailed, made him prone to adverse mental health outcomes:
One should not ignore that the injury has been decisive in the fact that the health has deteriorated so much in the last year… I’m not directly depressed, but you know that you… That it’s very easy to end up there.
Suffering from psychological reactions to the trauma
At eighteen months postdischarge, three participants reported experiencing psychological reactions to the traumatic accident, which affected their everyday lives. Andre’s experience of the accident, which was work-related, exemplifies how some participants developed a fear of injuring themselves again, with consequences for their mental health, including increased anxiety.
You notice that you are more afraid after such accidents and think more about the consequences… you feel that you are getting anxious, and you get scared because you go and think about it… so of course, it bothers you throughout the day … it doesn't stop me from doing the things I'm supposed to do [at work], but it takes a bit of a toll on my psyche.
For Andre, anxiety also exacerbated his depression, a condition he had struggled with for several years before the injury. Although his GP was familiar with this medical history, Andre was not offered psychological treatment during recovery, nor did he ask for a referral, so he was without specialised mental healthcare. Instead, his GP prescribed an antidepressant, but he experienced adverse side effects and stopped taking the medication.
Another participant also exemplifies how the healthcare system failed to meet the need for mental healthcare among patients with psychological reactions to trauma. Unlike Andre, this participant sought mental help care, without receiving it. The participant suffered severe panic attacks triggered by the injury, which increased in quantity and intensity for an extended period beyond the subacute phase. During recovery and at 18 months postdischarge, the participant presented symptoms of post-traumatic stress disorder (PTSD), which affected everyday functioning. Although a psychiatrist conducted a brief consultation prior to discharge from the trauma centre, the participant was not offered further follow-up. As the symptoms increased during recovery, the participant contacted the GP and asked for help with the mental health needs but did not receive it. Instead, the participant felt rejected and stigmatised by the GP, who focused on the cause of the injury rather than the mental health concerns. Accordingly, the participant reflected on the healthcare system’s absence of mental healthcare for trauma survivors and called for psychoeducative support:
I didn't have much help with that [mental health]… healthcare personnel should take into account that people might get depression and anxiety after such severe injuries, and not just throw in a psychiatrist fifteen minutes before the patient has to go to another hospital… and they should have given a bit more information… and sort of say… “you're going to struggle with it mentally…”
Coping with mental distress
Terje experienced abrupt and increased pain 1 year into recovery, which gradually worsened. The pain affected his physical activity, family, and social life. Terje could not work during this period and felt isolated due to the contagion measures associated with the COVID-19 pandemic.8 Furthermore, he suffered the loss of close relatives, which was stressful and affected him emotionally. During a short period, Terje experienced physical, mental and social distress and described symptoms of anxiety and depression. To cope with the situation, Terje started drinking alcohol but understood that it was a poor coping strategy:
I had a period at the beginning of Corona and it was a lot, it affected me mentally… On top of that, a lot happened in the family, and that was a lot at once and then I had a period… then I drank too much alcohol… and then I noticed that ok, there is something here that is not good… whether it was a painkiller [function] or if it was to escape […] I probably used alcohol for the mental… but it wasn't good…
At 18-month postdischarge, Godtfred experienced a lack of physical improvement, expressed great dissatisfaction with the follow-up from the specialist health services and felt stigmatised due to his age. According to him, the health system considered him ‘an older man who limped and chewed pills, still with no plan for his physical health to improve’. Godtfred described feeling angry, and his emotions towards the healthcare system impaired his ability to cope with the challenges of his life situation. To cope with the situation, he allied himself with the insurance company and set up a time frame for when they would initiate new examinations in the private healthcare system. For him, it was essential to have a structured schedule to relate to, and he experienced that his mental well-being improved, as he knew that he would receive professional help for his injuries in the long run:
But, I think after a year and a half and you're still walking with pain, something is wrong […] the trauma center has almost signed off, so I'm a bit offended by them, and therefore I'm thinking of using the insurance company for all it’s worth […] and I've agreed with them that we sort of say that the cut-off date [to interact] will be two years… in relation to any compensation… and it’s good to relate to because then after two years I'll get a proper examination.
Unmet needs for follow-up care
Questioning whether GPs are knowledgeable enough to provide adequate follow-up regarding injury-related challenges
Most participants explained that they contacted their GP when they had general health problems or needed prescription refills. Those who scheduled an appointment concerning injury-related challenges, such as increased pain, expected to be referred to a specialist for further examinations, as they believed that the GP could not help them or provide sufficient responses to their injury-related concerns. They perceived the GP as a gatekeeper for receiving specialised follow-up. Andre explained:
I myself have gone to the GP and been asked if I could be referred further […] I feel that he [the GP] knows what can be expected from a GP, so he refers onward to those who will address the need.
Godtfred expressed that he was not confident that his GP could provide sufficient care for his injury due to a lack of knowledge and experience in the specialised medical field. He said:
The GP is a bit like that… she’s kind and pleasant and well-intentioned and all sorts of things like that, but this (the injury) she doesn't know much about […] I think she’s doing what she can and she’s concerned about the general state.
Difficult to receive specialist evaluation when hoping for improvement
A minority of the participants had scheduled follow-up appointments and met specialists at the trauma centre during the first year after their initial discharge. Nevertheless, the participants regarded these consultations as an opportunity to obtain sufficient responses to their pain concerns, including the causes and consequences, from health professionals specialised in traumatic injuries, with access to their medical history and a high level of knowledge about trauma care.
Ben provides an example of how participants with severe pain and reduced physical function experienced difficulty receiving follow-up care from the specialist health services. He was on a 100% work assessment allowance and had difficulties coping with tasks related to everyday life due to his injuries, and he also used opioids according to need. Ben’s consultation took place approximately 6 months after discharge and hoped that his physical challenges would be addressed. However, the consultation was a disappointment, as he experienced not being met or understood his health needs. He explained:
It [the appointment] was with the hope that they would deal with it [the pain] in the same way as during my initial admission, but I did not get any sense of that. I got the feeling that I was a burden and that they did not want to see me again. I felt that he [the physician] wondered why I was not working. That was the impression I was left with, and he did not seem very interested. It was also written in the discharge journal that, from their side, my case was closed.
After this consultation, Ben realised that the door to the specialist health service was ‘closed’ and that he would not receive further follow-up, including examinations for his pain, at the trauma centre. Ben left the consultation feeling rejected and mistreated, with concerns that his reduced physical health and consistent pain might be permanent.
Andre also had a negative development during recovery. Like Ben, Andre had a scheduled follow-up appointment with a trauma specialist during the first year of recovery. Although he had severe pain, the specialist considered the surgery and treatment successful and discharged him from the system. As Andre remained hopeful for improvement, he desired further examinations to find causal explanations for his pain. Consequently, he contacted his GP requesting a referral for a diagnostic radiological analysis. Still, he experienced the process of getting a thorough examination as demanding and time-consuming, requiring extensive resources. He explained:
There have been a lot of X-rays and MRIs and CTs and all kinds of things like that…and I have felt that I have nagged about it myself… there has not been very much from them [the health services]. So I've been to a physiotherapist, manual therapist, and tried an osteopath and all sorts of strange things really […] It is me who has gone to the GP and asked to be referred further myself […] One must realize that one must do everything oneself, otherwise, nothing happens… that is the impression one has.
Challenging to contact the specialist health services
Terje provides another example of how participants faced challenges when seeking help from the specialist health service during recovery. At discharge, he was considered fully treated without needing follow-up. Consequently, his primary follow-up contact was with his GP. Eighteen months postdischarge, Terje was on 100% sick leave and experienced reduced mental and physical health, including severe pain, compared with the subacute phase. One year into recovery, he experienced a slow and progressive exacerbation of pain, which he worried about, and, overall, his health condition contrasted significantly compared with his health condition at discharge. Although he desired to receive follow-up care from the specialists who had treated him at the trauma centre, he did not know how to proceed. He said:
Now, I worry a lot about the pain, and it bothers me… If I had the opportunity to go somewhere or turn to someone…. now, I try to navigate a large and complex system, but it does not feel easy… when it turned so rough, it would have been good to be able to turn to those who have the [medical] history.
Terje, Ben and Andre all experienced that the challenges associated with receiving adequate evaluation from the specialist health services contributed to their diminishing hope of achieving a full recovery. Thus, they acknowledged and began accepting their new situation and adjusting accordingly.
Discussion
In this qualitative longitudinal study, we explored orthopaedic trauma patients' experiences of the long-term recovery pathway from 6 weeks through 18 months postdischarge. A novel finding reveals that subacute health status following discharge may be a poor predictor of long-term outcomes. The recovery pathway was experienced as unpredictable due to a self-perceived lack of improvement and alterations between periods of improvement and periods of exacerbated symptoms, including increased pain and reduced physical function. Eighteen months into recovery, most participants were coping with experiences of reduced physical and mental well-being, socioeconomic losses and insufficient support from the healthcare system. Additionally, five participants used opioids to relieve chronic pain, cope with mental distress, induce sleep and reduce withdrawal symptoms.
Pain
The participants in our study had suffered orthopaedic injuries associated with severe pain, and almost all experienced various degrees of injury-related pain 18 months postdischarge. Although the majority of the study participants were categorised as severely injured as measured by NISS (mean 23), it has been shown that the injury severity is a poor predictor of chronic pain.41 On the contrary, it is well documented that persistent pain in patients with orthopaedic injuries and multiple traumas is common several years following hospital discharge.16 17 In our study, several participants experienced pain that limited their physical function, indicating a physical disability. Chronic pain and disability are common ramifications of injury-related trauma,42 43 and chronic pain is found to decrease quality of life44 and increase the risk of disability.45 46 Concerning the longitudinal dynamics of change during the recovery trajectory, our study produced novel insights regarding the participants’ experiences of alternating periods of improvement and exacerbated symptoms, such as increased pain and reduced physical function. These findings correspond with two longitudinal cohort studies showing variable, non-linear recovery patterns in trauma survivors up to 3 years following hospital discharge, with pain reported as the dominant contributing factor.12 13 Overall, these findings generate knowledge about the recovery challenges experienced in the trauma population12 and jointly imply that subacute health status following discharge is a poor predictor of long-term outcomes.
Opioid use
Several participants reported long-term opioid use following the trauma, which aligns with studies that have documented that traumatic injury and continuation of the initial opioid prescription are risk factors for long-term opioid use.47 48 Although opioids are indispensable for acute pain management, up to 50% of trauma patients are discharged with an opioid prescription,49 50 and studies have shown that up to 20% of patients continue long-term opioid use.18 19 There is a lack of evidence suggesting that long-term opioid therapy reduces pain and improves physical function.51 Instead, it is associated with harm and adverse effects, such as ischaemic brain disease,52 53 impaired immunity and endocrine function,54 overdose, non-prescribed use and increased mortality.21
In the current study, several participants reported, 18 months into recovery, that the opioids served functions other than relieving chronic pain, such as inducing sleep and relaxation and reducing withdrawal symptoms. Similar motivations were found in the National Drug Use and Health Survey, which was conducted among 51 200 adults in the USA, among whom 3000 misused prescribed opioids. ‘To get high’ and ‘to relax’ were motivations reported by 11.6% and 10.9%, respectively.55
Opioids are respiratory depressants and can change patterns of sleep56; therefore, it is unlikely that the GPs who provided care to the participants in our study prescribed opioids for off-label use (eg, to improve sleep or ease mental distress). Instead, our findings suggest that opioids were prescribed 18 months into recovery as a continuation of the pain management approach initiated at the time of discharge from the trauma centre. That some participants were motivated to use opioids for reasons other than pain relief may indicate a pattern of problematic opioid use. However, the term ‘problematic use’ is not consistently defined in the literature, and overlapping categories circulate, such as misuse, addiction, opioid use disorder, dependence and abuse.57 This varied and imprecise terminology is a challenge when estimating the prevalence rates of problematic opioid use in the treatment of chronic pain, which ranges from 0.05% to 81%.58 59 However, when problematic opioid use was defined as misuse (eg, when opioids are used differently than prescribed, regardless of adverse effects), the rates ranged from 21% to 29%.57 Using opioids for reasons other than pain relief, as was reported among several of the participants in our study, may thus be considered misuse.
In the United States, guidelines recommend evaluating and assessing whether opioid therapy should be continued every 90 days,51 whereas guidelines from the Norwegian Directory of health state that opioid treatment lasting beyond 4 weeks requires a concrete assessment of the indication, need and risks.60 None of the participants who continued using opioids 18 months into the recovery period had experienced that their GPs discussed long-term opioid therapy with them or assessed the potential benefits and risks of continued use. Moreover, none of the participants experienced that the health professionals who initiated the opioid treatment provided taper plans, including information of tapering, or mapped their preinjury medical history, including substance use. This is concerning, as several factors are known to increase the risk of prolonged opioid use in trauma and surgical patients, including mental health problems and chronic pain,21 61–63 as well as pre-injury use of hypnotics61 and benzodiazepines and opioids.61 64 Therefore, screening trauma patients’ preinjury mental health status, including substance use, is critical before prescribing opioids, particularly for long-term use. Moreover, as system-based strategies, including protocol and guidelines for opioid use, are promising in preventing long-term opioid use following injury,24 65 trauma patients must be discharged from specialist health services with an individualised and tailored treatment plan for opioid therapy.
Mental health
Eighteen months after injury, several of the study participants described symptoms of mental distress. In addition, some experienced persistent psychological reactions to the trauma, which affected their functioning in everyday life, and one described symptoms of PTSD, which had evolved during recovery. Physical trauma survivors have an increased risk of developing mental illnesses, including mood, anxiety and post-traumatic stress disorders,66–69 and individuals experiencing mental health challenges have an increased risk of a complicated recovery pathway following injury.70 In addition, a common and coexisting prevalence of mental health disorders in individuals with chronic pain has also been documented.71 Our findings indicate that several factors and life events during recovery may lead to mental health problems and that these factors can change and evolve. For example, 18 months postdischarge, several participants experienced a reduction in physical function and thus a lack of the sustained improvement they had anticipated, resulting in symptoms of depression. There were also examples of psychological reactions to the trauma that increased in intensity throughout recovery. These findings are supported by a study by Holmes et al, which showed that a third of mood and anxiety disorders in trauma patients emerged after the first year following injury, for which persistent physical disability was identified as a risk factor for developing mental health issues.68
Follow-up during recovery
The participants who experienced persistent pain and reduced physical health during recovery experienced a need for re-evaluation and follow-up care at the trauma centre but found it challenging to access it, as they lacked knowledge of how to proceed or whom to contact. Beaton and colleagues report similar results and emphasise the need for a designated contact person to coordinate postdischarge care and engage the GP in the follow-up process.72 Although GPs have a vital role in the provision of follow-up care among trauma patients, several participants in our study questioned whether GPs are knowledgeable enough to address their trauma-related challenges. Likewise, Braaf and colleagues identified variations in the quality of follow-up care provided by GPs, communication barriers, and discrepancies between patient expectations and GP assessments of need.23 Also, several studies have demonstrated difficulties in meeting patient needs for information during the transfer from specialty to primary care9 23 73 74 as well as communication barriers between specialists and GPs.75 76
A recent scoping review emphasises the need to evaluate follow-up care and outcomes of trauma patients due to the extensive variations in post-trauma follow-up services that were found worldwide, including concerning the context in which care is delivered, how care is delivered, the quality of the interactions and the duration of follow-up.77 Also, research has shown that over 80% of trauma patients who participated in an intervention that provided a patient-centred care transition attained follow-up after hospitalisation, highlighting the importance of individualised and systematic care and follow-up78 as well as extending the existing follow-up time.79
Return to work
As being employed positively influences health and well-being,80 return to work is among the most-studied socioeconomic outcomes in research among trauma patients.81 A systematic review and meta-analysis comprising 43 studies showed that more than 36% of adult trauma patients had not returned to work during the first year following discharge,11 reflecting the mental and physical burden among survivors of physical trauma. The average NISS score in our study population was 23 (range 13–29), categorising the participants as severely injured (NISS>15), and most had yet to return to full-time work or study at 18 months postdischarge. Return to work is often associated with the severity of the injury, and studies have shown that patients with major trauma have a delayed return to work compared with those with mild or moderate injury.82 Our findings are consistent with these results. Moreover, our results show that participants with symptoms of depression and alternating periods of improvement and deteriorated physical and mental health during recovery had not returned to full-time work within 18 months following the injury. This aligns with previous research that has identified depression, pain and disability as key factors that are negatively associated with a return to work.83
Strengths and limitations
Although a strength of this paper is the longitudinal design where all participants took part in interviews at 6 weeks and 18 months postdischarge, several limitations should be noted.
The mental health problems described in the study findings relied on participants’ self-reported experience and perceptions and few participants had been referred to mental health services. Therefore, a study limitation is lack of access to the participants’ mental health records and general practitioners’ medical files, which disabled us to provide a detailed distribution of premorbid and mental health problems during the recovery phase. Moreover, the sample had a wide age range but only two female participants were included, and no specific differences related to age or gender were revealed. Studies on health outcomes in the trauma population seldom report on the impact of gender and there is a need for more knowledge.84 The generalisability of the findings in this qualitative study among trauma patients with orthopaedic injury associated with pain, is limited, but should instead be considered for the ways that they contribute to a more nuanced understanding of orthopaedic injury patients lived experiences, the potential clinical implications and potential for including new elements in patient-reported outcome measures for quantitative studies measuring health outcomes in the trauma population. For example, it may be assessed to what extent the following factors influence the long-term health outcomes for the trauma population for various subgroups (eg, orthopaedic injury, traumatic brain injury, multitrauma); lack of opioid tapering plans at discharge, continuation of opioid use during recovery, motivations for opioid use other than to relieve chronic pain and experiences of unmet follow-up needs during recovery. In addition, long-term outcome assessment may involve several years following discharge as trauma survivors in other studies report multiple comorbidities several years postinjury.85
Conclusions and implications
The patients’ experiences from this study establish knowledge of several challenges in the trauma population’s recovery trajectories, which may imply that subacute health status is a poor predictor of long-term outcomes. Throughout recovery, the participants struggled with physical and mental health needs without being met by the healthcare system. With the support of the existing literature, our findings point towards several implications for clinical practice and future research. There is a need to provide long-term follow-up for trauma patients in the specialist health service based on individual needs. This may also be relevant for patients who experience a manageable level of symptoms during an early phase following discharge, as their health status may deteriorate throughout recovery. Additionally, there is a need to screen trauma patients' mental health status in the subacute phase and provide regular follow-up and reassess for the potential onset of mental health problems in the long term. Finally, to prevent long-term opioid use beyond the subacute phase, it is necessary to provide systematic follow-up and reassessment of motivations and indications for continued use throughout the recovery pathway. Future research should explore whether access to multidisciplinary follow-up outpatient clinics and closer collaboration with primary health services may provide long-term, individualised healthcare and if this improves long-term health outcomes for trauma patients.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
Ethical approval was obtained from the Norwegian Regional Committee for Medical Research Ethics (2018/2477) and the Data Protection Officer at the OUH (nr.19/01751). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We want to express our sincere gratitude to all the study participants who generously gave their time and shared their experiences for this study. We also thank Christina Brux for the excellent language edition and valuable input on the final manuscript.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @Olavroi, @r_leiv
Contributors LAR and OR had the original idea for the study. IAH was PI and all authors took part in planning of study design. JF and IAH developed the interview guides. JF conducted the interviews and coded the transcripts. JF and IAH conducted the analysis that was discussed with LAR, OR and TC. JF wrote the first draft of the manuscript. All authors contributed substantially to the manuscript and have approved the final version. JF acts as guarantor for the study.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.