Health-related quality of life measurement in burns

Overview¶

Health-related quality of life (HRQoL) measurement evaluates the multidimensional impact of burn injury on physical, psychological, and social function as reported by the patient. As physical survival from severe burns has become more likely, concern has shifted toward the potential psychological and functional morbidity carried by survivors ^[6]. The broader trend in outcome assessment is a move away from defining good care solely as reduced morbidity and mortality and toward a more holistic account that includes HRQoL ^[1].

Recovery of optimal function so that survivors can participate fully in society, psychologically and physically, is a stated goal of burn rehabilitation ^[6]. HRQoL instruments operationalize that goal into measurable domains. One clinical overview organized burn outcome assessment into seven core domains: skin; neuromuscular function; sensory and pain; psychological function; physical role function; community participation; and perceived quality of life ^[14]. These domains span the surfaces that generic and burn-specific instruments attempt to capture.

This page covers the instruments used to measure HRQoL after burns, their psychometric properties, the trajectory and magnitude of HRQoL impairment over time, the patient and injury factors that predict it, and the measurement of HRQoL in children and in scar-specific outcomes.

Assessment¶

HRQoL instruments used in burns fall into generic measures, burn-specific measures, scar-specific measures, and pediatric measures. A systematic review of HRQoL in adults after burns found that the Burn Specific Health Scale-Brief (BSHS-B, 46%), the Short Form-36 (SF-36, 42%), and the EuroQol questionnaire (EQ-5D, 9%) were the most frequently applied instruments ^[2].

Generic instruments¶

Generic instruments allow comparison against general-population norms and across conditions. The SF-36 has been validated for measuring the temporal recovery of quality of life in the burn population, where it performed as a valid measure of recovery ^[15]. Its components were more sensitive to change than the BSHS-B from approximately one month after injury ^[15]. The EQ-5D, a short preference-based instrument, showed high feasibility through a high response rate and a low proportion of missing or invalid answers in burn-injured adults, with good psychometric properties ^[16]. PROMIS-29 domain scores have been validated among adult burn survivors, with strong evidence for reliability and validity reported in a National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System sample ^[17].

Burn-specific instruments¶

The Burn Specific Health Scale (BSHS) was developed to assess health status and quality of life in patients with burns ^[18]. The brief version, the BSHS-B, was derived as a shorter valid alternative to the longer BSHS-A and resolves into nine well-defined domains, with Cronbach's alphas reported between 0.75 and 0.93 ^[19]. In one comparison of three BSHS variants, correlations among the instruments were high and strongest between the BSHS-B and the BSHS-R ^[20]. Within the International Classification of Functioning framework, the BSHS-B covered most domains and was the only scale that also included personal factors ^[21].

The Life Impact Burn Recovery Evaluation (LIBRE) Profile is a patient-reported, multidimensional measure developed to assess social participation after burn injury in adult survivors ^[3][22]. The CARe Burn Scale is a burn-specific patient-reported outcome measure whose conceptual framework outlined 14 domains, 12 of which satisfied Rasch and traditional psychometric analyses ^[23].

For pediatric and young-adult populations, the Shriners Hospitals for Children/American Burn Association Burn Outcomes Questionnaires (BOQ) have been described as well-established, reliable, and valid burn-specific outcome measures ^[44]. The parent-reported BOQ for children aged 5 to 18 years (BOQ5-18) assesses recovery across 12 physical and psychosocial domains and has been characterized as widely used, reliable, and valid ^[45]. For older survivors, the Young Adult Burn Outcome Questionnaire (YABOQ) was developed and reported as a reliable and valid instrument for multidimensional functional outcome assessment, with Cronbach's alpha ranging from 0.72 to 0.92 across scales ^[46]; a later evaluation described the YABOQ as a validated, English-language patient-reported measure spanning 15 scale domains and supported the cross-cultural validity of most of its scales across English- and Spanish-speaking young adult burn survivors ^[47].

Scar-specific and upper-limb instruments¶

The Brisbane Burn Scar Impact Profile (BBSIP) is a scar-specific HRQoL measure with versions for adults, children aged 8 to 18 years, and caregiver proxies for younger children ^[13]. Support has been found for the reproducibility, longitudinal validity, responsiveness, and interpretability of most BBSIP item groups in adults ^[24]. For upper-limb burns, the QuickDASH demonstrated validity, repeatability, and responsiveness as an outcome measure in one longitudinal study ^[25].

Psychometric properties¶

Reliability and validity in burn populations have been reported across instruments and language adaptations. The Norwegian-language version of the abbreviated Burn Specific Health Scale (BSHS-A) showed satisfactory internal consistency and test-retest reliability in a validation study (Cronbach's alpha 0.97; ICC 0.95) ^[26], and the BSHS-B showed measurement invariance across Swedish- and Dutch-speaking burn populations that supports cross-cultural comparison between those two groups ^[27]. A validation of the Chinese-language version of the abbreviated Burn Specific Health Scale (BSHS-A) found high internal consistency (Cronbach's alpha >0.80 for all subscales), strong correlations with the SF-36 and EQ-5D scales, and neither floor nor ceiling effects ^[28]. Convergent and discriminant validity work reported higher convergence between the generic SF-36 and the condition-specific BSHS-B than between the EQ-5D and the BSHS-B, particularly in activity-related domains ^[29]. A systematic evaluation of measurement properties identified the BSHS-B and the Brisbane Burn Scar Impact Profile as having the best measurement properties for burn-specific and burn-scar HRQoL respectively, with the BBSIP the only instrument with high-quality evidence for content validity ^[30].

Outcomes after burn injury¶

HRQoL impairment after burns is measurable and durable. Using the SF-36, burn patients showed generic health status significantly poorer than expected from general-population scores, with reduced scores across physical function, role physical, general health, social function, and role emotional domains ^[5]. The same cohort still showed significant reduction of generic health at 47 months postinjury, reporting limitations in both physical and psychosocial domains ^[5]. A systematic review found that the lowest short-term scores clustered in the BSHS-B 'work' and 'heat sensitivity' domains, the SF-36 'bodily pain' and 'physical role limitations' domains, and the EQ-5D 'pain/discomfort' domain ^[2].

Functional recovery follows an extended timeline. In one long-term study, average return to driving occurred at 36 weeks and return to work at 51 weeks, and mobility and self-care were significantly altered when a burn exceeded 20% TBSA full-thickness; nonetheless these patients could develop functional independence and good quality of life ^[31]. A dissociation between generic health status and perceived quality of life has been described, in which generic instruments record impairment that patients do not experience as poor overall quality of life ^[5]. In a long-term burn cohort followed 2 to 7 years after injury, overall HRQoL was lower than in the general population when measured by the EQ VAS but not by the EQ-5D index, with only the pain/discomfort and usual-activities dimensions lower than population norms ^[38].

Predictors and determinants of HRQoL¶

Psychological and pain variables, rather than burn size alone, dominate the determinants of HRQoL after burns. Coping style, life threat during the accident, and early symptoms were strong predictors of psychopathology after a burn, while burn severity was not predictive of psychological health in that study ^[33]. Pain during hospitalization was significantly associated with psychological adjustment at 1-month, 1-year, and 2-year follow-up, and pain was a stronger predictor than burn size or length of hospitalization ^[9]. Depressive symptoms in reconstruction patients were largely predicted by body image dissatisfaction, with additional variance from physical function ^[7], and severity of post-traumatic stress disorder was significantly associated with physical, cognitive, and emotional dimensions of HRQoL ^[8].

Injury and functional factors also contribute. The size of the total full-thickness injury and patient age were identified as factors available at the time of injury that predict quality of life, with hand function and perceived social support at follow-up improving prediction ^[4]. Joint contracture lowered SF-36 physical functioning, role physical, bodily pain, and vitality scores, and TBSA correlated negatively with vitality and emotional role limitation subscales ^[34]. Localization of burns in the face and hands has been described as a disadvantage for social reintegration, and even slight functional limitations were linked to severe depressive symptoms ^[35].

Return to work is a recurring HRQoL anchor. Returning to work was associated with time since injury, the extent of full-thickness injury, and the personality trait of embitterment ^[36], and the non-working group reported lower generic (EQ-5D) and burn-specific (BSHS-B) HRQoL than the working group at every time point ^[37]. EQ-5D index from 2 to 7 years was predicted by the 12-month EQ-5D index together with concurrent work status and pain ^[38]. Unemployment was significantly associated with chronic pain, the extent of full-thickness injury, the presence of deformities, the number of operations, and length of hospital stay ^[39].

Special considerations¶

Pediatric HRQoL measurement relies on age-banded, often proxy-reported, instruments. Children surviving massive burns had SF-36 domain scores generally similar to population norms at long-term follow-up ^[40]. The WeeFIM has been used by burn centers to describe diminished functional capacity at discharge for severely burned children, and by 24 months mean scores indicated full independence regardless of burn size ^[12]. Parent-reported PedsQL scores differed significantly across age groups and burn cause in pediatric non-severe burns ^[41]. For scar-specific pediatric outcomes, the caregiver-report BBSIP0-8 was supported as an evaluative measure of burn scar-related HRQoL for children below eight years in the early post-acute period ^[48].

Family members are also affected. In one study, HRQoL was assessed in family members of burn patients alongside the patients themselves, situating burn HRQoL within a family context ^[32].

Controversies and Evidence Gaps¶

The principal unresolved problem is the absence of a single agreed measurement standard. The lack of consensus in the burn literature regarding the most appropriate outcome measures necessitates further research and long-term outcome studies ^[42]. Outcome reporting across burn randomized controlled trials is heterogeneous; reporting an agreed core outcome set has been proposed to allow effective evidence synthesis, and is described as a way to reduce reporting heterogeneity and support evidence-based decisions ^[10]. Eight core outcome domains important to adult patients and parents have been identified in scar management work ^[11]. In the critical care burns literature, a systematic review found patient-centered outcomes under-reported relative to a suggested core outcome set, with 95% of papers reporting pathophysiological manifestations but far fewer reporting life impact ^[43].

Instrument-selection trade-offs remain. Generic instruments enable population comparison but can miss burn-specific distress, while burn-specific instruments capture that distress but sacrifice cross-condition comparability ^[2]. The relative responsiveness of generic versus burn-specific instruments varies by time since injury and domain ^[15][24]. Evidence on measurement properties is uneven across instruments, and high-quality content-validity evidence is concentrated in a small number of tools ^[30].

References¶

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