Advances in burn care management and critical care have decreased mortality leading to greater emphasis in functional, social and psychological outcomes for burn survivors. Survivors often have complex multi-faceted rehabilitation issues, which result in significant short-term and long-term changes in quality of life. The World Health Organization (WHO) defines quality of life as: a state of complete physical, mental and social well-being and not just the absence of disease [1]. Burn injury outcomes have shifted from traditional measures of mortality and hospital length of stay to more specific functional and psychological outcomes [2]. Measuring the outcomes of burn survivors requires metrics such as quality of life instruments. The instruments to examine quality of life can be specific to burn injury or general for the population.

As part of the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) Burn Injury Model System (BMS) program, a comprehensive demographic, injury, and outcomes database was developed to facilitate the study of functional and psychosocial outcomes after burns [12,13]. This database has been used to report on the prevalence of pruritus at 5 and 10 years after injury, but not for other long-term quality of life indicators [14,15].

Data for the longitudinal burn injury database, including the BSHS-B, were collected prospectively via in-person interview, telephone interview or return mail and entered into an electronic, centralized database. BMS-funded institutions that provided data for analysis included Johns Hopkins University (Baltimore, MD), University of Texas Southwestern (Dallas, TX), University of Texas Medical Branch (Galveston, TX), and the University of Washington/Northwest Regional Burn Model System (Seattle, WA). Each BMS center maintains institutional Human Subjects Committee approval for the study. This report is from a cohort of burn survivors, injured between 1994 and 2006 who were followed at 10 years (±12 months) from their injury date. The eligibility criteria for this 10-year study included:

Enrollment in the Burn Model System research program at one of the four funded centers.

The mean of the responses within each domain of the BSHS-B were calculated and used as the score for the survivor in that particular domain. Due to the non-normal distribution, the medians of each BSHS-B domains for the cohort were reported. Missing data were recorded as missing and no imputation was performed. Responses to the items in each domain range from 0 to 4 on a Likert scale with lower scores indicating poorer quality of life. Data analysis was performed using Stata 12.1 (College Station, TX). Differences in responses were compared using Wilcoxon–Mann–Whitney or Kruskal–Wallis test. Each burn center that provided data maintained IRB approval. The University of Washington Institutional Review Board approved this study.

Ten-year survivor injury characteristics shown in Table 1 demonstrate a moderate severity of injury. The median burn size was 22% TBSA and the median burn size grafted was 14%, a surrogate for third degree burns. Two-thirds of the survivors were male and 38% of the survivors were less than 18 years of age at the time of injury. Only one survivor at 10 years was older than 65 years of age at the time of injury. Nearly 80% of the survivors were Caucasian, while the other survivors were primarily black. The most common cause of injury was fire and flame burns. Data on 93 survivors showed a median of 98 days to return to work or school after injury. Twenty seven of survivors had amputations due to the burn. Upon discharge, 77% of survivors went home or to someone’s home.

Of the nine domains, median BSHS-B scores for all survivors within the cohort were higher for the hand function, simple abilities, sexuality, and interpersonal relationships domains and lower median scores were seen in the heat sensitivity, affect, body image, and work domains (Table 2). Stratifying by sex, median BSHS-B scores (Fig. 1) indicate that affect scores were lower for females (n=75, median=3.1, IQR: 2–3.9) than males (n=145, median=3.6, IQR: 3.0–4.0, p=0.008), body image scores were lower for females (n=74, median=2.8, IQR: 1.0–3.8) than males (n=144, median=3.3, IQR: 2.4–4, p=0.004), and interpersonal relationships scores were lower for females (n=75, median=3.8, IQR: 3.0–4.0) than males (n=144, median=4, IQR: 3.5–4.0, p=0.022). For the subset of survivors that were older than 18 at the time of injury, this effect is magnified with significant worse scores for adult females compared to males. In comparison, there was no difference in scores by sex in survivors that were younger than 18 at the time of injury (Table 3). Furthermore, there was no difference in BSHS-B scores in any domain between Hispanics and non-Hispanics or between races.

Based on body location of the burn, survivors with head and neck burn injuries reported lower median scores for heat sensitivity and work than survivors without head and neck burns (heat sensitivity-median 2.8, IQR 1.8–3.6; work-median 3.3, IQR 2.8–4). However, this trend was not significant (p=0.06). Visibly grafted areas were defined as head/neck grafts, hand grafts, and foot grafts. Eighty two percent of the survivors had visible grafts. There was no difference in BSHS-B score in survivors with visible grafted areas compared to survivors without visible grafted areas, with the exception of hand function (Median 4.0, IQR: 4.0–4.0 vs median 4.0, IQR: 3.6–4.0, p=0.0008). Hand function was evaluated based on hand dominance. 80% of survivors were right hand dominant, 3.5% were left hand dominant and 1.5% were ambidextrous (14.6% were missing hand dominance). 53% of survivors experienced bilateral hand burns, 16% had right hand only burns, 7% had left hand only burns. In summary, 92.5% of survivors sustained burns of their dominant hand, and the median BSHS-B score for hand function was the same for survivors who had burns on their dominant hands, compared to those who did not sustain a burn to their dominant hand (Median 4, IQR: 3.6–4 vs Median 4, IQR: 3.8–4, p=0.49). Of the survivors, 133 (61%) underwent skin grafting of the hand and thirty-six survivors had hand burns that did not undergo grafting. These survivors had median hand function score of 4.0 (IQR: 4.0–4.0) compared to the survivors that underwent skin grafting had a median hand function score of 3.8 (IQR: 3.4–4.0, p=0.0002).

This is the first report from individuals who are 10 years from injury using the nine domains of the Burn Specific Health Scale-Brief (BHSH-B) instrument and the Burn Model System (BMS) national database. The BMS database is supported by the National Institute of Disability, Independent Living, and Rehabilitation Research (NIDILRR) and has been in existence since 1994. This study identifies long-term effects on quality of life specific to a burn injury and can serve as benchmarks of health-related patient reported outcomes. By providing these data, future studies and interventions now have a frame of reference.

Previous studies have demonstrated that body image and sexuality are concerns at 12 months after injury. Our results suggest that females continue to have concerns about body image and interpersonal relationships at 10 years after injury, corroborating previous studies of body image issues in female burn survivors. Interestingly, this effect is not seen in survivors injured as children. One hypothesis may be that pediatric survivors have parents and siblings as a source of support whereas adults may not have similar support from family or friends.

Using several HRQOL instruments including the BSHS-B, Wasiak et al also concluded that health-related outcomes improved quicker for males at 12 months. Similar to this study, BSHS-B scores were significantly lower in females than males in the body image, affect, and interpersonal relationships domains. This effect on females is further supported with worse scores of the psychological aspect of generic instruments (Short Form-36 and Kessler Psychological Distress Scale) compared to males [16]. Similar dissatisfaction with body image, affect and interpersonal relationships was noted in our overall cohort further supporting that burns have a long term psychosocial affect. Female survivors may benefit from more long-term psychosocial support than male survivors and psychosocial health remains to be a problem even at 10 years after injury.

The visibility of the graft did not significantly affect the BSHS-B scores, with the exception of hand function. Hand function was affected by grafting, as one would expect more superficial hand burns to heal without grafting and likely affect hand function. Hand function is affected by more than visibility and hand dominance and additional studies are necessary to further identify how hand function impacts HRQOL.

Since this report is a cross sectional study of survivors and we do not know how their quality of life changed from the time from hospital discharge to 10 years after injury, the conclusions and interpretation of the data are limited to understanding quality of life at 10 years. Furthermore, this dataset is limited to four burn centers, which may not represent the general burn population. In addition, treatment of burn injury may have evolved over time and these results may not apply to more recently burned patients. There may also be response bias for the survey instruments. For example, only 6% (13 survivors) had self-reported substance abuse, but substance misuse has been reported to be as high as 34% in the burn population [20]. This difference may suggest that patients that have substance misuse may be difficult to follow up long-term. There may also be survival bias, as only one patient was over 65 years old (at the time of the injury) in our dataset.

Certain domains of health may continue to be affected for individuals long after burn injury, and select populations may warrant additional interventions targeting specific domains to restore health and quality of life. These results support the concept that burn injuries represent a chronic condition and long-term medical and psychosocial support may benefit burn survivor recovery. Furthermore, there is a need for measuring long-term recovery and quality of life in burn survivors to better understand how we can effectively help these individuals during their acute recovery.