Quality of Life of Survivors of Trauma

Chapter 10


Quality of Life of Survivors of Trauma


Written by H. van Aswegen


Over the last two decades many more people have survived an episode of critical illness and injury than before, due to the major advances made in the quality of care provided to them in the intensive care unit (ICU). Traditionally the success of ICU management was measured in relation to the patient’s survival from critical illness, but the quality of their lives after discharge from the ICU and from hospital was largely overlooked. A number of years ago, the 2002 Brussels Roundtable discussions among intensive care practitioners concluded that survivors of critical illness suffered from poor functional capability, decreased quality of life (QOL) and few returned to work. Subsequently, they placed an increased burden and considerable stress on families and informal caregivers, resulting in increased economic costs for the patient, their families and society (Angus and Carlet, 2003). Therefore, the importance of health-related QOL after an episode of critical illness has become the focus of many investigations over the past few years.


In this chapter information is shared on:



The definition of quality of life.


The assessment of quality of life.


The quality of life of survivors of critical illness.


The quality of life of survivors of trauma and critical illness.


Rehabilitation for survivors of critical illness.


The suggestions for exercise rehabilitation for survivors of trauma and critical illness.


The potential challenges to exercise rehabilitation of survivors of trauma.


10.1. Definition of Quality of Life


There is no universally accepted definition of QOL. Socrates stated in an Athenian court that he feared some things more than death, and that it was not merely life itself but the QOL that counted most (Eales et al., 2004). The World Health Organisation (WHO) described QOL as ‘an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’ (WHO QOL Group, 1995). The WHO went further and described health-related QOL to be ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’ (WHO QOL Group, 1997).


10.2. Assessment of Quality of Life


Research conducted into the health-related QOL of ICU survivors provides information on these survivors’ recovery from illness and often highlights the need for the development of rehabilitation services to enhance recovery (Van Aswegen et al., 2011). The effect of major trauma on QOL in both adults and children has only recently become the focus of research globally; however, the effect of major trauma on children without traumatic brain injury (TBI) is particularly sparse (Janssens et al., 2008). Various measurement tools in the form of questionnaires have been developed and are being used to assess QOL in the critical care population (Tables 10.1 and 10.2).


Table 10.1:Subjective QOL questionnaires used for adults.






Satisfaction with life scale


Life satisfaction questionnaire


World Health Organisation QOL-BREF scale


Perceived QOL questionnaire


Global QOL questionnaire


Table 10.2:Objective QOL questionnaires used for adults.






Medical outcomes study short form 36 (SF-36)


Medical outcomes study short form 12 (SF-12)


EuroQol-5D (EQ-5D)


Quality of well-being


Sickness impact profile


Nottingham health profile


Community integration questionnaire


World Health Organisation QOL-BREF


Subjective QOL measures allow people to express their own individual point of view regarding their QOL status. These types of outcome measures evaluate feelings of life satisfaction or happiness (Shackman et al., 2005). Examples of subjective QOL measurement tools are listed in Table 10.1.


In contrast, objective QOL measurement tools assess peoples’ QOL status based on specific questions about their economic or living circumstances, with less emphasis on the individual’s feelings (Table 10.2).


The QOL assessment tools summarised in Tables 10.1 and 10.2 are often referred to as ‘generic’, as they can be applied to any patient population, regardless of their underlying disease or condition. Only the medical outcomes study short form 36 (SF-36) and the sickness impact profile questionnaires have been extensively validated for use in the general critical care population (Dowdy et al., 2005). The SF-36 has also been validated for use in the trauma population (Sluys et al., 2005; Ardolino et al., 2012).


Examples of disease-specific QOL questionnaires that can be used for patients who have suffered traumatic injury are listed in Table 10.3.


Table 10.3:Disease-specific QOL outcome measures used in adults who suffered trauma.






Polytrauma outcome (POLO) chart


QOL index spinal cord injury


Spinal cord injury-quality of life (SCI-QOL)


Craig hospital handicap assessment and reporting technique


Table 10.4:QOL outcome measures used in paediatric patients.






EQ-5DY


Pediatric QOL inventory (Peds-QL)


KIDSCREEN-27


Child health assessment questionnaire


Child health questionnaire


Health utilities index — mark 3


Adults and children interpret QOL in a different manner, and therefore paediatric QOL outcome measures were developed a number of years ago. Generic QOL outcome measures recommended in the paediatric population are listed in Table 10.4 (Janssens et al., 2008; Gabbe et al., 2011).


The variety of outcome measures available may seem overwhelming for the physiotherapist; however, the choice of QOL measure used should be determined by the individual patient’s condition as well as objectives related to the purpose of use (Wilson et al., 2011).


Researchers who investigate health-related QOL in survivors of trauma often use the SF-36 and EuroQoL-5 dimensions (EQ-5D) questionnaires (Ardolino et al., 2012) in adults and the paediatric QOL inventory (PedsQL) in children, and therefore these questionnaires will briefly be discussed below.


10.2.1. SF-36 questionnaire


The SF-36 is suitable for self-administration or administration by a trained interviewer, in person or by telephone, to persons aged 14 years or older. It can be administered in five to 10 minutes, with a high degree of acceptability and data quality (Ware, 1996). The SF-36 uses 36 items to measure eight QOL domains. These domains are physical functioning (PF), role physical (RP) (limitations due to physical problems), bodily pain, general health (GH) perception, vitality (VT), social functioning (SF), role emotional (RE) (limitations due to emotional problems) and mental health (MH). There is a further single item that assesses changes in the respondent’s health over the past year. Summary scores for physical and mental health can be calculated from the above domains. Domain and summary scores range from zero to 100. Higher scores reflect a better QOL (Dowdy et al., 2005; Ringdal et al., 2009). An example of the SF-36 questionnaire can be accessed at: www.sf-36.org/demos/SF-36v2.html


A shortened version of the SF-36, namely the SF-12, was developed a few years ago, but has not been used to the same extent as the SF-36 in the critical care or trauma populations.


10.2.2. EQ-5D questionnaire


Even though the EQ-5D has not been validated for use in the critical care population, an increasing number of researchers use it for the assessment of health-related QOL of critically ill trauma survivors, due to its simplicity and ease of administration (Granja et al., 2004; Cuthbertson et al., 2010; Orwelius et al., 2010; Pavoni et al., 2010; Ardolino et al., 2012). The EQ-5D comprises five items (mobility, self-care, usual activities, pain or discomfort and anxiety or depression) as well as a visual analogue scale (VAS) for self-rated health status. Each of these items has three alternatives (1 = no problems, 2 = moderate problems, 3 = severe problems) that the subject chooses from when answering each question. The subject’s answers are written down to represent a five-digit code which determines the subject’s health state (Badia et al., 2001). The VAS is a 20 cm vertical line and is graded from zero (worst possible health state) to 100 (best possible health state). The subject is asked to indicate their own health state on the VAS line (Orwelius et al., 2010; Öster et al., 2011). An example of the EQ-5D can be viewed at: www.biomedcentral.com/content/supplementary/1757-1146-5-17-S1.pdf


10.2.3. PedsQL questionnaire


The PedsQL is a widely used valid and reliable tool to determine the QOL of paediatric patients after traumatic injury (Varni et al., 2007; Weedon and Potterton, 2011). The questionnaire is developmentally appropraite as it consists of a child self-report questionnaire as well as a parent-report questionnaire for parents of children who are too young or unable to self-report on QOL. The PedsQL consists of 23 items that collect information on physical and emotional functioning as well as social and school functioning. The emotional functioning, school functioning and social functioning scales contribute towards the psychosocial health summary score, and the physical functioning scale makes up the physical health summary score. Information about the PedsQL can be accessed at: www.pedsql.org/about_pedsql.html


It is important to remember that, whereas a disease often has a finite time of onset and duration, QOL is a lifelong continuous variable, and QOL measurements may be limited by cultural differences, ethnic groups and between groups of different socio-economic status (Schipper et al., 1996).


10.3. Quality of Life of Survivors of Critical Illness


10.3.1. Physical function-related components of quality of life


People worldwide who have survived an episode of critical illness, sepsis or multiple organ dysfunction syndrome or even acute respiratory distress syndrome (ARDS) have reported limitations in physical components of health-related QOL in the early months (three to six months) following discharge from hospital (Herridge et al., 2003; Wehler et al., 2003; Granja et al., 2004; Cuthbertson et al., 2005; Hofhuis et al., 2008). A slow improvement in the physical aspects of health-related QOL has been reported during the course of the 12 months following discharge (Herridge et al., 2003; Cuthbertson et al., 2005); however, these limitations may persist for a period of two to five years after hospital discharge (Heyland et al., 2000; Jagodic et al., 2006; Cuthbertson et al., 2010; Herridge et al., 2011).


Physical function-related limitations in health-related QOL do not seem to be the result of long-term pulmonary abnormalities developed from episodes of ARDS or sepsis but are attributed to extrapulmonary complications associated with prolonged immobility and muscle catabolism due to critical illness (Herridge et al., 2011; Hough and Herridge, 2012). Combes et al. (2003) reported decreased energy levels and physical mobility and increased frequency in sleep disorders three years after hospital discharge in people who endured prolonged (more than 14 days) mechanical ventilation (MV) in the ICU. When comparing the recovery of physical function-related QOL after critical illness between previously healthy people and those with chronic illness, a difference in outcome is reported. Survivors of multiple organ dysfunction syndrome who had chronic health problems prior to admission into the ICU reported that their QOL related to physical function had returned to pre-admission levels at six months following discharge. Conversely, those survivors who were in good health prior to ICU admission reported a decrease in their health-related QOL at six months (Wehler et al., 2003). This suggests that those with chronic illness already experience a lower level of physical function prior to critical illness and thus have a lower expectation of improvement in physical function-related QOL after critical illness than those who were previously healthy.


Compared with individuals who never suffered critical illness, the physical function-related aspects of QOL for critical care survivors remain below the norms reported in various countries at all time points at which health-related QOL was assessed (Heyland et al., 2000; Dowdy et al., 2005; Hofhuis et al., 2008; Cuthbertson et al., 2010). Critical illness leads to a sharp decline in all aspects of health-related QOL when measured on admission to the ICU; however, there is an improvement in reported health-related QOL that already starts at discharge from the ICU and continues after discharge from the hospital (Hofhuis et al., 2008). Hofhuis et al. (2008) emphasised that rehabilitation should start early in the ICU and be continued even after hospital discharge. The long-term negative impact that critical illness has on physical function, as mentioned previously, should be managed along the same lines as other chronic medical conditions; in other words, with rehabilitation that continues long after discharge from the hospital setting.


10.3.2. Mental health-related components of quality of life


Limitations in the mental health aspects of health-related QOL after critical illness occur in the first few months after discharge from the ICU but tend to recover to levels comparable with that reported for healthy populations by six months after discharge (Herridge et al., 2003; Cuthbertson et al., 2005, 2010; Hofhuis et al., 2008). Some speculate that the unexpectedly good levels of mental health reported by ICU survivors might be attributed to a mental ‘high’ as subjects feel that they managed to ‘cheat’ death (Cuthbertson et al., 2005; Livingston et al., 2009). Other authors, however, have reported that mental health aspects of health-related QOL for their patients had remained low when compared to general population norms even up to 16 months after discharge (Heyland et al., 2000; Dowdy et al., 2005). Factors such as an inability to work after critical illness, posttraumatic stress disorder (PTSD), cognitive dysfunction and depression can contribute to a decreased level of mental health-related QOL (Wunsch and Angus, 2010).


10.3.3. Posttraumatic stress disorder in survivors of critical illness


Traumatic events or injury may give rise to the development of emotional illnesses such as PTSD. People who suffer from this disorder re-experience the traumatic event or injury, tend to avoid people or things that remind them of the event and are very sensitive to normal life experiences. These people suffer from avoidance and hyperarousal behavioural patterns. The prevalence of PTSD in the general ICU population has always been thought to be low, but recently new evidence has come to light that PTSD prevalence could be as high as 19–22% and that symptoms persist over time (Davydow et al., 2008). Risk factors for the development of PTSD after critical illness include pre-ICU psychopathology, high dosages of benzodiazepine sedative medication and post-ICU memories of in-ICU frightening or psychotic experiences (Davydow et al., 2008; Hough and Herridge, 2012). Other general risk factors for the development of PTSD in survivors of critical illness include female gender and younger age (Davydow et al., 2008; Hough and Herridge, 2012).


People with a history of depression or anxiety may be prone to in-ICU delirium and psychotic experiences and may be at risk of developing PTSD post-ICU. There seems to be no association between the severity of illness on admission to the ICU and the development of PTSD post-ICU. Survivors of critical illness who develop PTSD may experience substantial limitations to their health-related QOL (Davydow et al., 2008). Physiotherapists are often engaged in longer contact time with patients than the medical personnel due to the nature of their profession; therefore, if a physiotherapist suspects that a patient might be suffering from PTSD, after critical illness and discharge from the ICU, the therapist should discuss this matter with the other interdisciplinary team members and decide the appropriateness of referral of the patient for psychological evaluation and treatment.


10.4. Quality of Life of Survivors of Trauma and Critical Illness


10.4.1. Physical function-related components of quality of life


As discussed in Chapter 1, trauma is the leading cause of death or disability in people under the age of 45 years (Holbrook et al., 2001; Sluys et al., 2005). It has been reported that people with trauma, due to their relatively young age, have longer survival after discharge from the ICU than people with other types of admission diagnoses (Fu et al., 2011). The limitations in health-related QOL reported by trauma survivors are not dissimilar to that reported by survivors of critical illness, as discussed in Section 10.3. The decrease in physical aspects of health-related QOL in the trauma population is similarly ascribed to musculoskeletal problems such as those experienced by the non-injured critically ill patient, and also to pain secondary to the traumatic injury. Some researchers report that health-related QOL related to physical function recovers to levels similar to those of the general population by two years following discharge from hospital (Orwelius et al., 2010, 2012), whereas others report that it remains low in comparison with population norms even at five years after discharge (Sluys et al., 2005; Öster et al., 2011).


Limitations that various groups of trauma survivors experience in the short and long term after discharge from the acute care setting in relation to physical function-related QOL are discussed below.


10.4.1.1. Survivors of blunt or penetrating trauma


Recurrent trauma related to firearm injuries is often attributed to pre-injury problems such as alcohol abuse and violent behaviour, as mentioned in Chapter 5. Penetrating trunk trauma as a result of stab or gunshot wounds, especially to the chest or trunk, frequently necessitates admission of the patient into the ICU for monitoring following surgery for the repair of damage to the internal organs. Those who survive these types of injuries and spend less than five days on MV in ICU report that their health-related QOL after discharge returns to pre-morbid levels by six months. These subjects also have a health-related QOL comparable to that of a healthy age- and sex-matched group by six months after discharge (Van Aswegen et al., 2011). Those who received MV for longer than five days in the ICU, however, presented with reduced health-related QOL related to physical function at six months following discharge compared to their pre-morbid status, the healthy group and those who had a short period of MV (Van Aswegen et al., 2011). The reduction in physical aspects of health-related QOL experienced by this group of survivors might be explained by persistent muscle weakness after discharge due to prolonged immobilisation in the ICU and prolonged exposure to pro-inflammatory cytokine imbalance as a result of sepsis, which likely resulted in muscle catabolism (refer to the discussion on inflammatory cytokines in Chapter 1). Survivors of penetrating trunk trauma who received prolonged MV were reported to suffer from muscle weakness and limitations in exercise capacity up to six months after discharge from the hospital (Van Aswegen et al., 2010).


Two years following discharge from the ICU due to blunt trauma (including head injury), subjects in China reported health-related QOL lower than that reported for the general population (Fu et al., 2011). Subjects who were older than 45 years had a lower level of physical function-related QOL than those younger than 45 years at the two-year assessment. Prolonged ICU length of stay, as well as higher severity of injury, contributed to the lower reported health-related QOL with regards to physical function (Fu et al., 2011).


Survivors of blunt or penetrating trauma in Sweden had lower health-related QOL in all domains of physical function compared to an age- and sex-matched group from the general Swedish population even at five years after the traumatic event (Sluys et al., 2005). Older age, number of inhospital complications, number of surgical procedures performed and prolonged ICU and hospital stay were associated with the observed decrease in health-related QOL. Those subjects who were in full employment or had part-time work five years after the event had a higher level of health-related QOL than those who were still on sick leave or who received a disability grant. A sense of abandonment after discharge from the hospital, as reported by some subjects, was found to have a negative impact on their health-related QOL. Inadequate pain management in the ICU or surgical ward was also associated with a reduction in health-related QOL at five years after discharge. Interestingly, the authors reported that blunt trauma led to a lower health-related QOL related to physical function and that penetrating trauma led to a lower health-related QOL related to mental health (Sluys et al., 2005).


10.4.1.1.1. Physical function-related QOL in paediatric patients who suffered blunt or penetrating trauma


The reader is referred to the discussion in the multiple orthopaedic trauma section.


10.4.1.2. Survivors of burn injury


If the nature of burn injuries is taken into account, it is reasonable to assume that people who survive this type of trauma might suffer from some form of reduction in health-related QOL, not least due to the changes in physical appearance that such persons have as a result of the injury. It has been reported that burn injuries may decrease health-related QOL and muscle strength for up to 36 months after the injury (Jarrett et al., 2008). The person’s level of emotional distress and the amount of pain endured during and after the injury may also decrease reported health-related QOL. The size of the burn injury may also affect functional outcomes and health-related QOL. Return to work is affected by length of hospital stay as well as the number of surgical procedures that the person undergoes (Jarrett et al., 2008). Subjects under 40 years of age, who sustained fairly small total body surface area burns (less than 12%), report health-related QOL near to pre-injury levels by six months after discharge (Jarrett et al., 2008).


Anzarut et al. (2005) assessed QOL in survivors of severe burn injuries (more than 50% total body surface area) in Canada. They found that the strongest independent predictors of physical components of QOL were the total amount of full-thickness burn injury and hand function. Hand burn injury that was severe enough to necessitate grafting lead to significant reductions in reported physical component summary (PCS) scores on the SF-36.


The physiological changes to the lung which occur as a result of inhalation burns do not result in long-term pulmonary dysfunction in the majority of burn survivors; however, cases of compromised lung function, decreased aerobic capacity and reduced participation in leisure-related physical activity have been documented up to five years after inhalation injury (Willis et al., 2011).


These poor long-term outcomes of burn survivors should be an impetus for the development of more integrated rehabilitation approaches (Esselman et al., 2006). Early data suggests that targeted exercise prescription can improve outcomes in the burn-injured population (Al-Mousawi et al., 2010; Grisbrook et al., 2012; Tan et al., 2012). An individualised rehabilitation programme which focuses on strength and endurance training should be available for all burn survivors (Celis et al., 2003). Such a programme should start in hospital but should also be offered after hospital discharge.


10.4.1.2.1. Physical function-related QOL in paediatric patients with burn injury


Most researchers that investigate health-related QOL of paediatric survivors of major trauma exclude patients with burn injuries from their study samples due to the impact of burns on appearance and function. For this reason, QOL studies for paediatric burn survivors are scarce. One study investigated body image, mood and QOL in burn survivors aged 11–19 years who suffered burn injury as children (Pope et al., 2007). The authors compared burn survivors’ data with that of an age-matched control group who had not suffered burn injury. They found that the burn survivors reported higher levels of health-related QOL than the healthy control group (Pope et al., 2007). These results are based on a small group of subjects and should therefore be interpreted with caution.


Another study by Weedon and Potterton (2011) set out to establish QOL in children aged two to 12 years with burn injury one week and three months after discharge from a hospital in South Africa using the PedsQL. They reported that overall QOL was 10% short of ‘optimal’, as reported from developed countries, at three months. The largest improvements were seen in physical aspects of health-related QOL as the children became more active as their wounds healed. They postulated that the speedy improvement in QOL observed could be attributed to the fact that young children have a faster rate of recovery from injury than adults. They also acknowledged that if QOL is assessed over a longer time period after discharge, a reduction in scores might be observed, as burn survivors are at an increased risk of developing long-term complications (Weedon and Potterton, 2011).


10.4.1.3. Survivors of multiple orthopaedic injuries


Multiple orthopaedic trauma as a result of motor vehicle accidents (MVA), motor cycle crashes and falls is not just isolated to the limbs but often involves the thoracic cage structures. Multiple blood transfusions and bilateral pulmonary contusions predispose to the development of ARDS, as discussed in Chapter 5. At six months after discharge from the hospital, patients who sustained bilateral pulmonary contusions at the time of injury were reported to have more restrictions in exercise capacity than those who suffered multiple trauma but didn’t have pulmonary contusion (Leone et al., 2008). Pulmonary function impairments in this patient population at six months following discharge was associated with the diagnosis of ARDS during ICU stay. An obstructive lung disease pattern was identified in 44% of subjects and a restrictive disease pattern in 7% of subjects (Leone et al., 2008). The authors reported that smoking history prior to injury, number of fractured ribs and ICU length of stay did not have an influence on pulmonary function test results at six months after discharge. Health-related QOL for this group of patients remained decreased at one year after discharge (Leone et al., 2008).


Patients who suffered multiple fractures or fractures sustained due to high-energy transfer present with prolonged disability, which has a negative impact on return to work after discharge (Livingston et al., 2009). Reasons put forward for these findings include a longer ICU stay with the risk of numerous complications due to the severity of injury, which would contribute to significant loss of muscle mass and subsequently result in poor QOL related to physical function (Livingston et al., 2009). Lower extremity fractures are reported to negatively impact physical function-related QOL in the first six months after hospital discharge; more so than injury to other body regions (except the spine) (Aitken et al., 2012).


Patients who sustained pelvis or isolated acetabular fractures as a result of trauma suffer from pain years after the event. Gerbershagen et al. (2010) showed that 64% of patients reported high-intensity posttraumatic pelvic pain when surveyed four years after the incident. Those who sustained type B or C pelvic fractures or isolated acetabular fractures reported higher pain intensity than those who sustained type A pelvic fractures. As a result, physical function-related QOL was very low in those with high pain intensity (Gerbershagen et al., 2010).


10.4.1.3.1. Physical function-related QOL in paediatric patients after multiple orthopaedic injuries


The most frequent cause of orthopaedic injury in children younger than 18 years is MVAs, pedestrian accidents or falls (Winthrop et al., 2005). Children do have the ability to rapidly improve over the first six months after injury; however, those older than five years who have suffered major trauma that resulted in lower extremity injuries (excluding traumatic brain injury and spinal cord injury) report limitations in physical function even at six months after discharge from a trauma centre (Winthrop et al., 2005). The method of fracture management might impact physical functioning, especially in relation to femur fractures. Those managed with internal fixation report higher levels of physical function-related QOL than those children managed with a spica cast or traction (Winthrop, 2010). Children with fractures of the tibia and fibula report low levels of physical function-related QOL even at one year after hospital discharge (Winthrop, 2010).


Adolescents who suffered major trauma were assessed for QOL at various time points over the first two years after discharge. They showed progressive improvement in QOL but, compared to normative population-based data, their QOL scores remained well below the norm at all time points of assessment (Holbrook et al., 2007). Older adolescents reported lower QOL compared to younger adolescents up to two years after suffering major traumatic injury. A possible explanation offered by the authors is that older children’s responses to injury mature into adult responses to injury, hence the lower reported QOL (Holbrook et al., 2007). Injury to multiple body regions is associated with deficits in health-related QOL for adolescents up to two years after the incident (Holbrook et al., 2007).


10.4.1.4. Survivors of spinal cord injury


Spinal cord injury (SCI) leads to severe physical disability and people with SCI and neurological deficit may develop secondary complications (e.g. bladder and bowel dysfunction, chronic pain or depression) that significantly impact their already lowered sense of life satisfaction and well-being (Van Koppenhagen et al., 2008; Wijesuriya et al., 2012). Quality of life research shows that people with SCI and neurological deficit have significantly lower levels of QOL compared to healthy controls or normative population data (Middleton et al., 2007; Boakye et al., 2012; Schouten et al., 2013). Domains of QOL, as measured with the SF-36, that seem to be more severely affected by SCI are those related to PF, RP and bodily pain (Middleton et al., 2007; Boakye et al., 2012). As can be expected, people with tetraplegia seem to have reduced QOL related to PF and bodily pain compared to those with paraplegia (Middleton et al., 2007; Boakye et al., 2012).


Many people living with SCI and neurological deficit complain of chronic fatigue, which negatively impacts their physical function (Wijesuriya et al., 2012). The time since the onset of SCI seems to be the most important factor related to fatigue. Less fatigue is reported by those people with a longer time since the onset of SCI (more than nine years); higher levels of fatigue are reported by those who recently experienced SCI (Wijesuriya et al., 2012). A possible explanation for this finding is that those who suffered SCI a long time ago had learnt to adapt to their injury and its impairments and may exhibit better physical fitness and improved coping and participation skills (Wijesuriya et al., 2012).


Those with SCI without neurological deficit report a QOL that is similar to that of normative population data and have a high rate of return to work (Schouten et al., 2013).


10.4.1.4.1. Physical function-related QOL in paediatric patients with spinal cord injury


There is a dearth of information on the effect of SCI on physical function-related QOL in the paediatric population. The only report found showed that youth with paraplegia participated in more activities more frequently than youth with tetraplegia (Riordan et al., 2013).


10.4.1.5. Survivors of traumatic brain injury


As can be expected, health-related QOL of patients who suffered moderate to severe TBI is reported to be significantly affected when compared to that reported by a healthy population (Hawthorne et al., 2009; Arango-Lasprilla et al., 2012; Hu et al., 2012). Various domains of physical function-related QOL (RP, bodily pain and GH) seem to be affected by TBI (Hawthorne et al., 2009; Arango-Lasprilla et al., 2012). Elevated levels of fatigue and decreased vitality are complaints often reported by people with TBI (Wijesuriya et al., 2012). Two years after the traumatic event, patients diagnosed with severe TBI still exhibited significantly lower scores for PCS as measured with the SF-36 than those diagnosed with moderate TBI (Hu et al., 2012).


This difference in physical function-related QOL measures in patients with moderate and severe TBI seems to disappear at 10 years after the injury. Andelic et al. (2009) reported no significant differences in PCS scores between patients with moderate and severe TBI. They also reported higher scores for PF and RP in those patients with TBI that were employed 10 years after TBI.


10.4.1.5.1. Physical function-related QOL in paediatric patients with traumatic brain injury


Functional ability of children aged between six and 14 years who suffered TBI is negatively influenced by the severity of injury (Anderson et al., 2012). These authors also found that the child’s pre-injury functional level was a greater predictor of post-injury functional ability than the severity of TBI.


10.4.2. Mental health-related components of quality of life


Intensive care unit delirium has been reported in a small percentage of trauma survivors (up to 75% of general ICU survivors have reported delusional memories) who were assessed six to 18 months after discharge from the ICU (Ringdal et al., 2009). Delirium is characterised by cerebral dysfunction that can develop due to electrolyte abnormalities, sepsis, fever, shock, certain medications (benzodiazepines, opiates or anticholenergics), infection, hypertension or anemia (Cavallazzi et al., 2012). Symptoms of delirium that subjects might exhibit include hallucinations, dreams, nightmares experienced in the ICU or the incorrect perception that ICU staff are trying to hurt them. It seems to be more common in younger patients who have a prolonged ICU stay, and hence longer periods of MV, higher injury severity and greater morbidity, than other trauma sufferers. These patients reported poor health-related QOL and higher levels of anxiety and signs of depression than trauma patients who had no delusional memories (Ringdal et al., 2009).


Continuous decreased levels of mental health-related QOL up to two years following trauma have been reported to be the result of pre-existing disease (Orwelius et al., 2010, 2012). Pre-injury factors such as age, pre-existing mental disease, gender and socio-economic status may impact on mental health-related QOL after injury. Also, factors related to the actual injury, such as type, severity of injury and perceived threat to life, may influence mental health-related QOL after injury. Post-injury factors including health care interventions and physical and psychological consequences of the injury could impact on health-related QOL (Sluys et al., 2005).


Limitations in mental health-related QOL that various groups of trauma survivors experience in the short and long term after discharge from the acute care setting are discussed below.


10.4.2.1. Survivors of blunt or penetrating trauma


Mental health-related QOL of survivors of penetrating trunk trauma who received prolonged MV was similar to that of a healthy group and the group who received a short period of MV at six months after discharge (Van Aswegen et al., 2011). The majority of these subjects were male and reported that they were grateful to be alive, which might have contributed to the higher than expected scores. Fu et al. (2011) reported that female survivors of blunt trauma reported lower levels of mental health-related QOL than male survivors and that subjects with head injuries had lower levels of mental health than other blunt trauma survivors.


10.4.2.2. Survivors of burn injury


Anzarut et al. (2005) reported that age at the time of injury and the level of social support that survivors had at home after discharge from the burn centre were the strongest independent predictors of mental health component summary (MCS) scores on the SF-36. The younger the survivor, the higher their reported MH score on the SF-36 questionnaire. Interestingly, these authors found no association between facial burns requiring grafting and QOL; however, the majority of their study population was male and their results might have been different if more females participated in the study (Anzarut et al., 2005).


10.4.2.3. Survivors of multiple orthopaedic injuries


In a cohort of patients who suffered traumatic injury, age, gender and the subject’s perceived ability to control their own environment impacted most on MH status. Mental health status improved as age increased, and men had a significantly higher MH status than women. Lower perceived ability to control one’s own environment was associated with lower levels of MH (Aitken et al., 2012).


10.4.2.4. Survivors of spinal cord injury


Not all patients who suffer SCI present with limitations in QOL due to MH or RE problems. There does seem to be a smaller group of SCI sufferers who are at increased risk of developing psychological disease following the injury. These people may suffer from lowered QOL due to MH, RE and SF limitations (Middleton et al., 2007; Wijesuriya et al., 2012). Women seem to experience lower levels of QOL after traumatic SCI than men (Middleton et al., 2007). A possible explanation for this finding is that men are more frequently involved in trauma and thus the unbalanced gender sample sizes of QOL research studies could contribute to this unusual finding (Middleton et al., 2007). A person with SCI who has a strong sense of self-efficacy (belief that they can do a particular task successfully in the future) is likely to have a better level of QOL compared to someone with a low sense of self-efficacy (Middleton et al., 2007).


10.4.2.4.1. Mental health-related QOL in paediatric patients with spinal cord injury


Children with SCI are at a higher risk for developing depression or anxiety disorders than those without SCI. Those who develop depression or anxiety disorders have lower levels of QOL in the long term following SCI (Garma et al., 2011). Children with SCI under the age of 18 years old report significantly lower levels of QOL one year after the injury, compared with QOL reported by a healthy group without SCI (Garma et al., 2011). One year after SCI the reported mental health-related QOL of children with tetraplegia and those with paraplegia is not significantly different. This suggests that the level of SCI does not directly influence QOL in children in the long term (Oladeji et al., 2007).


10.4.2.5. Survivors of traumatic brain injury


Psychiatric disorders tend to develop in up to a third of patients after severe TBI and affects these patients’ QOL (Diaz et al., 2012). These authors observed the development of psychiatric disorders in patients after severe TBI over an 18-month period. Major depressive disorder, anxiety disorder and personality changes were reported to develop in a third of the study population. Patients with severe TBI and personality changes had a significant decline in general health, as well as impairments in PF and SF domains, compared to those with TBI without personality changes (Diaz et al., 2012). Subjects with severe TBI and depression had significantly lower health-related QOL in all domains of the SF-36 over the 18-month period compared to those with TBI without depression (Diaz et al., 2012).


The severity of TBI continues to be a major contributor to poor mental health two years after injury, as patients with severe injury exhibit significantly lower scores in MCS as measured with the SF-36 than those diagnosed with moderate TBI (Hu et al., 2012). This difference in mental health-related QOL measures in patients with moderate and severe TBI seems to disappear at 10 years after the injury (Andelic et al., 2009).


10.4.2.5.1. Mental health-related QOL in paediatric patients with traumatic brain injury


The severity of brain injury has a greater impact on QOL outcomes in children than age at the time of injury, premorbid functioning, family or social factors (Winthrop, 2010). Those with severe TBI often present with cognitive dysfunction in the first 12 months after injury. A substantial reduction in mental health-related QOL in the first two years after injury have been reported for children younger than 18 years who have suffered moderate or severe TBI or mild TBI with intracranial haemorrhage (Rivara et al., 2011). These children presented with an impaired ability to participate in life situations and life events and an impaired ability to participate in communication and social activites in school (Rivara et al., 2011). Children with TBI suffer from low levels of QOL even at three years after injury. Hispanic children seem to have even lower levels of QOL at three years after TBI than non-Hispanic white children with TBI (Jimenez et al., 2013). This suggests that there may be cultural influences on mental health-related QOL.


Children with orthopaedic injuries and severe TBI have more limitations in neuropsychological, behavioural and adaptive functioning than those with orthopaedic injuries without TBI (Winthrop, 2010). Finally, the impact of caregivers’ strain on the health-related QOL of survivors of TBI should not be dismissed (Winthrop, 2010).


10.4.3. Posttraumatic stress disorder in survivors of trauma


10.4.3.1. Adult population


Symptoms of PTSD (Table 10.5) have been reported in the trauma population after discharge from the ICU. A multicentre survey on a civilian population (824 participants) in the USA who sustained trauma as a result of assault, natural disasters or MVA reported a PTSD rate of 32% (Holbrook et al., 2001). Perception of threat to life was associated with the onset of PTSD. The disorder was also more commonly found in younger low-income (less than $20,000) adults, and a rate of 40% was reported among females, at six months following the event. Intentional injury such as assault and the expectation that the injury might occur again was associated with late onset PTSD. A strong association was found between PTSD and penetrating trauma. The authors concluded that PTSD resulted in a decrease in health-related QOL for this civilian population (Holbrook et al., 2001).


Table 10.5:Common symptoms of PTSD*.






Intrusive memories, including recurrent distressing memories of the event or reliving the event (flashbacks)


Avoidance, including not talking or thinking about the event and avoiding people and places associated with the event


Negative changes in thinking and mood, which includes feeling hopeless about the future and difficulty maintaining close relationships


Changes in emotional reactions, such as outbursts of anger, overwhelming shame or being easily frightened


*(Mayo Clinic, 2014).


A study conducted in Sweden by Öster et al. (2011) reported on the health-related QOL of people who suffered burn injuries. They showed that, two to seven years after discharge, these subjects had a lower health-related QOL than the general Swedish population. A diagnosis of PTSD, substance abuse disorder, pain and a none-working status had a negative impact on health-related QOL. The majority of their subjects still reported problems with pain or discomfort at the time of assessment. In subjects who sustained severe burn injuries, longer hospital length of stay was associated with more problems related to mobility and pain and indicated a slower physical recovery (Öster et al., 2011).


Symptoms of PTSD diagnosed in survivors of burn injury at one month after hospital discharge has a significantly negative impact on physical functioning at two years follow up. Furthermore, PTSD at six, 12 and 24 months after discharge is reported to interfere greatly with psychosocial aspects of QOL in burn survivors (Corry et al., 2010).


Subjects who suffered mild TBI are at increased risk for developing PTSD compared to others. Posttraumatic stress disorder can develop years after the TBI event. In those that do develop PTSD, impairments related to physical and cognitive function and control of emotions are reported (Vanderploeg et al., 2009).


10.4.3.2. Paediatric population


Acute stress disorder (ASD) and the consequent development of PTSD are also reported in adolescents and children who have suffered major traumatic injury. Perceived threat to life, intentional injury and pre-trauma psychopathology are the most significant predictors of the development of ASD and PTSD in children and adolescents following trauma (Holbrook et al., 2005; Winthrop, 2010). Female adolescents who suffered major traumatic injury seem to have a higher risk for developing ASD than male adolescents, but the reasons for this finding are still unclear (Holbrook et al., 2005). Low health-related QOL at one year after trauma is associated with the presence of posttraumatic stress symptoms as early as one month after the injury.


Children who suffered burn injury are at a particularly high risk for the development of PTSD (Winthrop, 2010). A prevalence rate of 10% PTSD was found in children aged one to six years at six months following the injury. Risk factors for the development of PTSD in this group were the presence of parent posttraumatic stress symptoms, size of the burn injury and pre-injury emotional and behavioural difficulties (De Young et al., 2014).


Mild to severe TBI in children aged between six and 15 years is associated with an increased risk for PTSD (Brown et al., 2014). The authors reported that the presence of pain was higher in those diagnosed with PTSD even at 18 months following the injury compared to those with TBI but no PTSD.


10.5. Rehabilitation of Survivors of Critical Illness


Despite the fact that the health benefits derived from regular exercise is well known, there is a dearth of literature on the effect of exercise therapy on health-related QOL in survivors of critical illness following discharge from the hospital.


Jones et al. (2003) tested the effectiveness of a rehabilitation programme on the recovery of survivors of critical illness using a randomised controlled study design in the UK. They compiled a 93-page rehabilitation package that consisted of a self-directed exercise programme, diagrams and illustrations. The manual also contained advice on a wide range of psychological, psychosocial and physical problems that the ICU survivor could expect to encounter after they had recovered from critical illness. Subjects were contacted by telephone three times per week after discharge to monitor progress; subjects in the experimental group were also encouraged to use the self-help rehabilitation manual. All subjects were tested at follow-up clinics at eight weeks and six months after discharge. The authors found that the SF-36 PF score for subjects in the experimental group was closer to normal and significantly different from those in the control group (Jones et al., 2003). Some critique on this study includes the fact that the authors did not objectively measure muscle strength or exercise capacity in their subjects and therefore it is difficult to draw conclusions regarding the effect of the rehabilitation manual on their musculoskeletal system recovery after critical illness.


More recently, Elliot et al. (2011) tested the effectiveness of an eight-week home-based rehabilitation programme on the health-related QOL and physical function recovery of survivors of critical illness using a multi-centre randomised controlled trial design in Australia. The home-based physical rehabilitation programme consisted of strength training exercises and walking. The control group received no interventions except for the three study assessment visits; the exercise group received an illustrated exercise manual to use at home for eight weeks. They also received personal visits from a health care professional experienced in exercise training on three of the eight weeks to ensure graded, individualised endurance and strength training. Telephone calls from the health care professional to the participant were performed on the remaining four non-visit weeks to ensure compliance with the exercise programme. Patient outcomes (SF-36 and six-minute walk test (6MWT)) were assessed at one, eight and 26 weeks following discharge. The authors reported that the home-based rehabilitation programme had no significant effect on physical recovery and functional status of the participants in their trial. They listed some limitations to their study, including not meeting the estimated sample size despite screening over 6000 patients; unrealistic expectations of treatment effect according to the PF domain of the SF-36; and being unable to objectively assess training compliance of subjects in the exercise group (Elliot et al., 2011). They did not assess muscle strength objectively in this study and therefore it is not clear whether the intensity of strength training prescribed for the experimental group was adequate during the eight weeks of training. Inter-rater reliability of the assessors in the performance of the 6MWT and administration of the SF-36 questionnaire to study participants was not mentioned in this multi-centre trial and could have influenced the results obtained.


A unique approach to exercise rehabilitation for survivors of critical illness was reported by Denehy et al. (2013). They tested the effectiveness of an exercise rehabilitation programme, which was initiated in the ICU and carried through to the outpatient setting, on physical function assessed at 12 months after hospital discharge. This was a single-centre randomised controlled trial. Medical or surgical adult patients with moderate severity of illness were randomised to a usual care or intervention group. The usual care group received chest physiotherapy treatment and were mobilised out of bed and encouraged to march on the spot by the bedside in the ICU. After transfer to the acute ward, patients’ physiotherapy management focus shifted to functional recovery and discharge planning. Outpatient exercise classes did not form part of usual care. The intervention group received usual care as well as strength training of the extremities and functional exercises in the ICU based on individualised patient assessment outcomes. Patients were encouraged to march by the bedside and do repeated sit-to-stand movements. These exercises were commenced on day five of ICU stay. Initially exercises were performed once daily for 15 minutes and, as the patient’s condition improved, frequency of exercise was increased to twice daily for 15 minutes. On the ward, exercise duration was increased to 30 minutes twice daily with the aim of reaching 60 minutes of exercise daily. The programme consisted of cardiovascular and functional exercises and progressive resistance strength training exercises. In the outpatient setting, exercise frequency was progressed to 60 minutes of exercise twice weekly for eight weeks. Individual patient’s programmes were progressed according to their re-assessment findings. No maintenance exercises were prescribed to patients in the period after completion of the outpatient programme. At 12-month follow-up, the authors found no significant differences between the intervention group and usual care group subjects in relation to physical function (measured with 6MWT) or health-related QOL (measured with SF-36). The authors put forward several limitations to their study, which included failure to reach enrolment targets for the trial, the heterogenous patient population in relation to age, comorbidities and presence of sepsis and, lastly, the low attendance at the outpatient programme (Denehy et al., 2013).


Despite the slightly discouraging reports on the effects of exercise rehabilitation in survivors of critical illness, the importance of rehabilitation that starts in the ICU and is carried through to post-ICU care into the community setting is still emphasised in the literature (Hough and Herridge, 2012).


10.6. Suggestions for Exercise Rehabilitation for Survivors of Trauma and Critical Illness


Physiotherapists use exercise prescription and exercise programmes in their management of a wide range of patient populations to optimise their physical activity and minimise the health risks associated with physical inactivity (World Confederation for Physical Therapy, 2011). All the clinical chapters in this book emphasised the role of physiotherapists in providing early rehabilitation in the ICU and ward settings on a daily basis for patients who had suffered traumatic injury. A large portion of the entry-level training programmes for physiotherapists worldwide focus on education and clinical reasoning in human anatomy, physiology, pathology and exercise science. Physiotherapists are therefore also well qualified to be involved in the care of these patients in the community setting, after discharge from the hospital.


Ongoing structured rehabilitation protocols and programmes for patients with burns, orthopaedic injury, SCI or TBI after discharge from the acute care setting are well known and well established in most countries. Patients who suffered blunt or penetrating trauma, especially to the chest or trunk, regularly receive rehabilitative care during their stay in the acute care setting, but rehabilitation often ceases at discharge as the need for intensive ongoing exercise therapy in the community setting is not recognised by the patient, the physiotherapist or both. A search of the available literature revealed no studies that investigated the effects of exercise rehabilitation on the recovery of survivors of blunt or penetrating trauma. In light of the significant long-term limitations to physical function-related QOL that trauma survivors suffer, especially those who had a complicated and prolonged ICU stay, exercise rehabilitation after discharge is of great importance. The suggestions made below regarding exercise rehabilitation interventions in the community setting are aimed at this specific group of trauma survivors, but can also be applied to those recovering from burn injuries or orthopaedic injuries.


The physical and mental health benefits of exercise therapy and the principles of exercise prescription were discussed in Chapter 4 (Section 4.1). Prior to exercise prescription for any survivor of trauma in the community setting, exercise testing should be performed to establish the individual’s baseline exercise endurance and muscle strength. Clinical exercise testing for assessment of endurance, such as a treadmill or cycle ergometer test, may be performed if the physiotherapist has access to such equipment. Field tests such as the 6MWT, shuttle walk test or three-minute step test may also be used. Results obtained from an exercise test will guide the physiotherapist regarding aerobic exercise prescription for each individual subject in relation to frequency, intensity and duration of exercise to be performed. Muscle strength testing may also be performed using either the one repetition maximum (RM) or five RM tests in order to guide prescription for resistance training.


The dearth of literature regarding exercise rehabilition for survivors of trauma makes it difficult to set out exercise prescription guidelines for these patients. The recommendations provided in Tables 10.6 and 10.7 are based on the American College of Sports Medicine (ACSM, 2014) guidelines for exercise prescription for deconditioned individuals and the exercise format used for survivors of critical illness in the study by Berney et al. (2012) (refer to Chapter 4, Section 4.1). Exercise prescription for survivors of traumatic injury should therefore follow a similar pattern, adjusting the intervention to suit each individual patient’s abilities and needs.


Table 10.6:Recommendations provided by ACSM (2014) for exercise prescription for deconditioned individuals.






Duration of exercise


Aerobic exercise


ImageStart with 15–30 minutes of moderate-intensity exercise per session


ImageGradually progress to 30–60 minutes of moderate-intensity exercise per session


ImageProgress to 10–20 minutes of vigorous-intensity exercise per session, when indicated


ImageGradually progress to 60 minutes of vigorous-intensity exercise, when indicated


ImageBouts of ≥ 10 minutes of exercise spread throughout the day to total the required duration of exercise may be used


Resistance training


ImageNo specific duration of training was specified


Frequency of exercise


Aerobic exercise


ImageStart with moderate-intensity exercise at least three days per week; progress to moderate-intensity exercise performed five days per week


ImageFurther progression to vigorous-intensity exercise performed three days per week


ImageFinal progression to a combination of moderate- and vigorous-intensity exercise performed 3–5 days per week


Resistance training


ImageTrain each muscle group 2–3 days per week with 48 hours rest between training sessions of the same muscle group


ImageStart by splitting the body into selected muscle groups that are trained in different sessions; progress to training all muscle groups in one session


Intensity of exercise


Aerobic exercise


ImageStart with light- to moderate-intensity exercise for deconditioned individuals (30–40% of maximal heart rate (HRmax)*


ImageProgress to moderate-intensity exercise (40–60% HRmax) if indicated


ImageFinal progression to vigorous-intensity exercise (60–90% HRmax) when indicated


Resistance training


ImageStart with 40–50% of one RM


ImageProgress to 50–70% of one RM, if indicated


ImageFinal progression to ≥ 80% of one RM, if indicated


Type of exercise


Aerobic exercise


ImageExercise that involves major muscle groups, e.g. walking, leisurely cycling, jogging, running, aerobics, stepping, spinning and swimming


Resistance training


ImageMulti-joint and single-joint exercises


ImageBody weight, resistance bands or free weights


Volume of exercise


Aerobic exercise


Image1000 kilocalories per week or 150 minutes of physical activity per week or greater than 5400–7900 pedometer steps per day


Resistance training


ImageEach muscle group should be trained for 2–4 sets to improve strength and power


ImageDeconditioned individuals should start with one set per muscle group


Image8–12 repetitions per set


ImageRest period of 2–3 minutes between each set of repetitions


*HRmax = 207 − (0.7 × age) is a more accurate estimation of exercise intensity than HRmax = 220 − age (ACSM, 2014).


Exercise therapy for this group of trauma survivors may be performed in a supervised hospital-based outpatient environment or at the rooms of a physiotherapist who works in private practice; or it may be performed without supervision at home, using an exercise manual with illustrations. Ideally exercise in both types of environments should be encouraged, with emphasis initially on supervised exercise to ensure safety and effectiveness of training and to monitor the patient’s response to exercise; however, emphasis should shift to unsupervised training away from the physiotherapist as soon as possible to empower the patient by taking responsibility for their own health and well-being.


Table 10.7:Exercise prescription format used by Berney et al. (2012) for outpatient-based rehabilitation of survivors of critical illness.






Duration of exercise



Aerobic exercise


Image30 minutes


Resistance training


Image20 minutes


Functional retraining


Image10 minutes

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Dec 18, 2016 | Posted by in CARDIOLOGY | Comments Off on Quality of Life of Survivors of Trauma

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