Health utilities in burn injury survivors: A systematic review

Synodinou, Dafni; Savoie-White, Félix H.; Sangone, Alassane; Chang, Sue-Ling; Cloutier, Chanel Beaudoin; Bergeron, Frédéric; Guertin, Jason R.

doi:10.1016/j.burns.2021.09.003

Cited by 8 publications

(3 citation statements)

References 37 publications

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“…Therefore, the results as measured with the EQ-5D instrument correspond to the subjective improvements and the near-normalisation of their daily lives as reported by the study participants and reflected in their patient characteristics data ( Table 1 ). The health index values for a phototoxic reaction collected retrospectively in our cohort were comparable to values found in people with acute burn injuries at the time of their hospital admission [ 39 , 40 , 41 ]. In our assessment, these health index values are plausible because the pain associated with a phototoxic burn injury in EPP is described as devastating, long-lasting, excruciating, and able to elicit suicidal ideations [ 8 , 20 ].…”

Section: Discussionsupporting

confidence: 66%

Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-Initiated EQ-5D Feasibility Study

Barman‐Aksözen

Minder

Granata

et al. 2023

IJERPH

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Erythropoietic protoporphyria (EPP) is an ultra-rare inborn error of metabolism characterised by painful phototoxic burn injuries after short exposure times to visible light. Patients with EPP are highly adapted to their condition which makes the quantification of their health-related quality of life (QoL) challenging. In the presented patient-initiated feasibility study, we describe a new approach to assess treatment benefits in EPP by measuring QoL with the generic EQ-5D instrument in five patients under long-term (≥two years) treatment with afamelanotide, the first approved therapy for EPP. For the study, we selected patients with EPP who in addition were affected by an involuntary treatment interruption (caused by a temporary reimbursement suspension) because we hypothesized that individuals who had previously unlearned their adaptation are better able to assess their life without treatment than treatment-naïve patients. QoL under treatment was comparable to the age-matched population norm, and retrospective results for a treatment interruption and phototoxic reaction time point were comparable to the QoL of patients with chronic neuropathic pain and acute burn injuries, respectively. The results were accepted by the National Institute for Health and Care Excellence in England for their evaluation of the cost-effectiveness of afamelanotide, i.e., the calculation of quality-adjusted life years.

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Section: Discussionsupporting

confidence: 66%

Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-Initiated EQ-5D Feasibility Study

Barman‐Aksözen

Minder

Granata

et al. 2023

IJERPH

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“…In addition, the EQ-5D includes an EQ-VAS that is scaled vertically and runs from 0 (worst imaginable health state) to 100 (best imaginable health state). The EQ-5D, which is short and easy to complete, is often used after burns [31] and has good feasibility and reasonable criterion validity in the burn population [32]. The addition of a cognition domain slightly improved the psychometric performance of the EQ-5D in traumatic brain injury patients [33].…”

Section: Recalled Pre-burn Health-related Quality Of Lifementioning

confidence: 99%

Pre-Burn Health-Related Quality of Life: Patient and Partner Perspectives

Dam

Hofland

Jong³

et al. 2022

EBJ

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A proxy-assessment of health-related quality of life (HRQL) may be an alternative for burn patients who are medically unable to self-report shortly after being admitted to the hospital. This study examined the patient–partner agreement on the recalled pre-injury HRQL of burn patients. In a multi-centre study of 117 patient–partner pairs, the recalled pre-burn HRQL was assessed with the EQ-5D-3L + Cognition during the acute phase following the burns. Agreement was evaluated with Kappa and ICC statistics. Burn severity and PTSD symptoms were assessed as potential predictors of disagreement. The results showed that pre-burn EQ-Index scores were similar to population norms, whereas the EQ Visual Analog Scale (EQ-VAS) scores of patients were significantly higher. Agreement varied across EQ-5D domains and, after adjusting for prevalence, was substantial to almost perfect. Average agreement on the EQ-Index and EQ-VAS was, respectively, substantial and moderate, but differences between partners were larger at lower levels of HRQL, and specifically in the pain/discomfort domain. Patient–partner differences could not be explained by the patient’s age or gender, number of surgeries, partner’s presence at the burn event, or post-traumatic stress disorder (PTSD) symptoms of either the patient or partner. In conclusion, patient–partner agreement is substantial and partner–proxy reports of pre-burn EQ-5D domains and EQ-Index scores may be used to complement or serve as a substitute for the patient’s assessment. Given the moderate agreement on the EQ-VAS, it may be less suited for proxy assessment.

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“…9 Burns injuries are now considered as chronic diseases with multiple long-term physical and psychological consequences. 10 Previous studies have found that compared with other patients, patients with chronic or intermittent pain, persistent fatigue, anxiety or depression are more likely to suffer from the loss of dignity. 11 A qualitative descriptive study in Iran on the dignity of nurses, family caregivers, and burns patients, found that the traumatic experience of suffering a burns injury, painful hospital treatment, physical dysfunction, and sympathy from others, made burn patients feel that they were not treated with dignity and that patients may feel stigmatized, their autonomy undermined and disrespected, which may lead to negative emotions such as depression and anxiety, and ultimately to a loss of dignity.…”

Section: Introductionmentioning

confidence: 99%

Factors influence the dignity of burns patients: A cross-sectional study

Deng,

Yao,

Wang

et al. 2023

Nurs Ethics

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Background There is a high incidence of burns in China and the sequelae of post-burn scar growth, disfigurement, and other body image disorders can cause serious psychological distress to burns patients, and negatively affecting the patient’s dignity. However, there is limited knowledge relating to the dignity of burns patients. Aim To investigate the factors that affect dignity in burns patients. Design Cross-sectional study. Participants and research context We recruited 323 burn patients from the burn unit of a tertiary care hospital. The Patient Dignity Scale, Burn Specific Health Scale-Brief, Hospital Anxiety and Depression Scale were used to assess burn patients’ dignity, quality of life, anxiety, and depression, respectively. 18 sociodemographic variables were included in the questionnaire. Ethical considerations Before the data were collected, the study protocol was reviewed and approved by the Ethics Committee of the Guangzhou Red Cross Hospital of Jinan University (Reference: 2022-149-02) and all patients provided and signed informed consent forms. Findings This study included 323 burns patients; of these, 26 (8%) had a mild loss of dignity, 94 (29.1%) had a moderate loss of dignity, 125 (38.7%) had a severe loss of dignity, and 78 (24.1%) had a very severe loss of dignity. The main factors that influence the loss of dignity in burns patients, including the department in which the patient was treated after their burns, gender, the clinical stage of the burn, quality-of-life, depression, resident medical insurance, the cause of the burn, and the burn site. Conclusions In most cases, the loss of dignity after burn injury is serious. Clinical health care professionals can provide personalized whole-life dignity care for patients by considering the factors that affect the dignity of burns patients, developing targeted dignity management programs, and implementing individualized interventions to maintain dignity, thus helping burns injury patients return to social life and work.

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Health utilities in burn injury survivors: A systematic review

Cited by 8 publications

References 37 publications

Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-Initiated EQ-5D Feasibility Study

Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-Initiated EQ-5D Feasibility Study

Pre-Burn Health-Related Quality of Life: Patient and Partner Perspectives

Factors influence the dignity of burns patients: A cross-sectional study

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