From ages of 1 to 44 years, traumatic brain injury (TBI) is the major with health-related injury associated with mortality [1]. TBI is defined as an alteration in brain function or other evidence of brain pathology caused by an external force [2]. At present there are about 10 million people affected annually by TBI [3]. TBI can severely and permanently change a person’s life [4]. Truelle et al. define TBI as a “silent epidemic” and they believe that this “silent epidemic” is not widely known and its importance to public health is insufficiently recognized [5, 6].

TBI induces excitotoxic surges which facilitate an influx of calcium into the cell which in a progressive and delayed manner cause non-inflammatory swelling and hence program further neural loss [7, 8]. Edema increases the volume of intracranial contents, which translates into increased intracranial pressure (ICP). A vicious cycle of brain swelling, increased ICP, reduction in blood supply and oxygen delivery, energy failure and further swelling is developed which further enhances brain injury hence precipitating death [9–11].

Non-invasive therapeutic methods are used as first line measures for ICP control [9, 11]. Decompressive craniectomy (DC), first reported by Annandale in 1894, is a promising rescue therapeutic strategy for refractory cerebral edema in cases of failure of first line non-invasive measures [12]. The rationale behind DC is to convert an injury within a closed box, with a fixed volume and limited reserve, into an open system with increased capacity to accommodate mass [13].

Reduced health related quality of life (HRQOL) has been identified in individuals with TBI when compared with the healthy population [14–17]. Traditionally, outcomes from TBI have been assessed by objective functional indicators such as recovery from disability, or return to work and productivity, while subjective physical, social and psychological effects were neglected [6]. Patient-reported outcomes (PRO), where patients capture their own perspective, has become a central end-point of rehabilitation and has led to increased interest in evaluation of quality of life post TBI [18]. As documented by von Steinbuechel, neurology and neurosurgery have adapted to HRQOL as patient reported outcome relatively late [16].

QOLIBRI is a multidimensional view of HRQOL, encompassing well-being and functioning in physical, psychological (cognitive and emotional), social, and daily life domains, with the patient viewed as the best source of information on his or her subjective state [6, 19]. The psychometric properties, correlations with neuropsychological tests and cross cultural validity of QOLIBRI have proved to overcome all the short comings in the previously present HRQOL instruments [20]. QOLIBRI contains 37 items in 6 domains, Cognition, Self, Daily Life and Autonomy, Social Relationships, Emotion and Physical Problems respectively [6].

Several studies have supported the use of DC in not only TBI but also following ischemic stroke, subarachnoid hemorrhage and cases of severe intracranial infection [21]. Findings obtained so far on DC are mixed; some groups report a relatively high prevalence of favorable outcomes while others report much lower prevalence of favorable outcomes [15]. In order to better understand the PRO on HRQOL, we conducted a retrospective study on TBI patients who performed DC.

The use of decompressive craniectomy in neurosurgery has been widely discussed. Authors have noticed ethical contradiction in that absolute priority is given to preserving life while it remains unclear whether it results in a significant improvement in the quality of life of the patient [23]. To our knowledge, surprisingly, there has been no previous study to evaluate the quality of life of patients who performed decompressive craniectomy after traumatic brain injury. QOLIBRI, a disease specific instrument, assesses health related quality of life (HRQoL) of patients from different dimensions and help to keep tract of the present condition of patient and upon follow ups shows progress of patients from different aspects. In TBI patients who require DC, quick decisions must be made due to severity of the condition. Patient’s decision and consent is substituted by surrogate decision makers who make choices between life and death. Risks of unacceptable badness (RUB) is a situation in which survivors live in a state which they would regard as unacceptably bad is often ignored [23].

Our search in PubMed, Cochrane and Google Scholar with keywords “TBI”, “DC”, “Quality of Life”, “HRQoL” and/or “QOLIBRI” revealed about 1200 articles. After careful evaluation by our authors, 115 articles were selected and 32 articles were used in this study. This is the first article to evaluate the patient’s perspective on his/her current quality of life after decompressive craniectomy due to traumatic brain injury.

Though intracranial pressure seems to be alleviated by the removal of the cranial bone and the dura matter, the patient’s outcome, hence quality of life, has been questioned by many researchers [24–26]. DC is intended to increase the expansion volume of the edematous brain tissue in the closed cranial box by removing a bone flap (usually 12 cm large), thereby increasing compliance which will result in a shift to the right of the pressure-volume curve. Intracranial pressure (ICP) is clinically controlled and oxygenation of the brain tissues are maintained which, in theory, will decrease secondary TBI injuries [22, 27]. However, the Extended Glasgow Outcome Scale after 6 months in patients who undergone DC plus standard care was significantly worse compared to the patients who received standard care alone [26].

Decompressive craniectomy may be regarded as a simple procedure by many, but the fact that two surgical procedures are required- removal of bone flap (craniotomy) followed by repair of the defect (cranioplasty) - may be associated with significant complications [22, 25]. Early complications of craniectomy are associated with changes in interstitial pressures and brain compliance, cerebrospinal fluid circulation, cerebral blood perfusion and cerebral vasoreactivity autoregulation [13]. Syndrome of the trephined, usually later in craniectomy, is characterized by severe headache, dizziness, undue fatigability, poor memory, irritability, epilepsy, discomfort and psychiatric symptoms. [25] Infection, subdural hygroma, brain parenchymal damage, instability of implant and injury at the unprotected craniectomy site are complications associated with cranioplasty [13, 22, 25].

Bullinger et al. recommended that quality of life of TBI patients should reflect the point of view of patients, significant others and health care providers, though differences in perception may exist [28]. Studies reviewed by Nicole V.S. et al. indicated that moderate to severely TBI affected patients lived with a perceptually changed body image and self-image. Feelings of having lost their way, often struggling for a new normalcy after changes in physical and social conditions are new perspectives of TBI patients [29]. The QOLIBRI items do not focus only on disabilities which are helpful to patients making then identify not only weaknesses but also strengths and the impact on their own life situations. This is particularly effective for rehabilitation as it enhances strengths and facilitates adjustments rather than trying to compensate for disabilities [30].

The ultimate goal of health care and rehabilitation following TBI is to return the person to full health or to enable him or her to maintain as high a health related quality of life (HRQOL) as possible. Subjective opinion of patients is crucial in prioritizing therapeutic goals as it takes into account their personal needs, values and hopes thus improving goal attainment. It also facilitates the therapeutic alliance, thus helping the participant to build a new life via a new ego-identity, in his/her own cultural, social and environmental context [30, 31]. QOLIBRI is an ideal 37-item questionnaire, which can be completed in less than 20 min, and can be regularly used in clinics for patients follow-up. It can help to identify and set appropriate goals for therapy. Score shifts in individual domains may reflect areas of life where gains or drawbacks consequent to treatment are made [6, 19, 30].

83.8 % of our patient population had worse GCS score less than 8. The mean total QOLIBRI score was 62.5 (SD = 12.5), maximum score of 72.6 (SD = 15.7) was noted in the cognition domain and minimum score of 50.2 (SD = 17.3) was noted in the physical domain. We found that our “satisfied” scale scores were higher than the previously reported scores, whereas the “bothered” scale score were lower than that reported earlier [14, 18–20, 32]. These scores may have been influenced by the fact that severely injured patients have a greater sense of “survivorship” along with greater levels of social support. Also, because of impaired self-awareness, patients self-report may create a false impression that they have better neurological recovery from TBI than is the actual case [18, 32]. However, it has been earlier reported that patients may have adapted to new dimensions after TBI as when asked whether they would have consented to surgical intervention even if they had known their eventual outcome, answers were in the affirmative. Patients may adapt to their disability and recalibrate to as what they believe to be an acceptable quality of life and perceive an “unfavorable” outcome not necessarily as unacceptable as is perceived by others [24]. However, interestingly, the longer the time interval between TBI and time at QOLIBRI instrument application, the lower the score for cognitive (p = 0.00), self (p = 0.04), daily life (p = 0.02), emotion (p = 0.05) and total QOLIBRI (p = 0.02) score. We speculate that these patients, at the beginning, because of the impairment of their self-awareness, may actually underestimate the harm caused to them, but as time passes they become more aware and tend to appreciate the severity of their condition.

Patients whose total QOLIBRI score is less than 60 meet the hospital anxiety and depression scale (HADS) criteria of probable anxiety or depression and patients with total score less than 40 meet HADS criteria for diagnosis of both conditions [30]. Our total QOLIBRI score was 62.5. Siponski et al. studied 157 patients of which 59.2 % had GCS scale less than 8 (severe), and reported total QOLIBRI score less than ours [18]. However, other studies reported higher total score than ours [14, 19]. DC after TBI did not seem to be a definite factor to plunged total QOLIBRI score.

A separate issue was identified when dealing with TBI patients who undergone DC. Quality of life of patients as perceived by patients and relatives may be contradictory. Cases were noted where patients believed to be perfectly normal whereas relatives complained of increased temper, bad decision makings, poor hygiene and throwing tantrums among others. There were also cases where relatives believed that patient were recovering perfectly whereas patients themselves were complaining of difficulties in adaptation to the new lifestyle post TBI and DC. Especially, young female patients who had skull defect prior to cranioplasty were unwilling to go out and socialize with friends as they were terrified with the “alien” look. Reconstructive cranioplasty has an overall positive influence on the emotion domain (p = 0.05) the total QOLIBRI score (p = 0.05). This supports the findings of Cho et al. that in appropriately selected patients early cranioplasty must be performed [25]. We believe that if we can apply the QOLIBRI instrument in both patient and caregivers each time on follow up, harmony can be brought in the patient-caregiver relationship. TBI directly affects the patient but indirect harm to the caregivers is usually ignored, proper guidance and support to the caregivers must also be part of rehabilitation treatment.

Traumatic brain injuries mostly affect young patients when they are financially unstable and deal with major life problems like looking for employment, getting married and child bearing. QOLIBRI is a new disease specific instrument recommended by the international consensus group on quality of life after TBI. Cronbach’s α, which reflects the reliability and internal consistency of scales proved to be very effective and test-retest reliability of the scores was acceptable.

The rehabilitation of TBI patients who undergo DC is a multi-disciplinary process with involvement of assessment from several professionals. The 6 domains of the QOLIBRI instrument can evaluate the patients from different perspectives and patients can be re-evaluated routinely in the rehabilitation phase as soon as they are aware enough to respond appropriately. After each evaluation the present score can be compared with the previous score and areas of weakness can be implemented in the further treatment plans by the rehabilitation task force.

QOLIBRI is in line with the current rehabilitation measures as it is also multidisciplinary involving not only a rehabilitation therapist but also a psychiatrist and willpower of the patient and caregiver. As DC is a topic of debate among neurosurgeons, we would strongly recommend the use of QOLIBRI in evaluation of traumatic brain injury patients who undergone DC to shed further light on this issue.