Burn Patient Perspectives on Disability Weights and the Philosophy of Disability: A Gap in the Literature
Abstract
:1. Introduction
2. Methods
3. Results
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Conflicts of Interest
References
- World Health Organization. Burns. 2018. Available online: https://www.who.int/en/news-room/fact-sheets/detail/burns. (accessed on 1 April 2020).
- Kazis, L.E.; Lee, A.F.; Rose, M.; Liang, M.H.; Li, N.C.; Ren, X.S.; Tompkins, R.G. Recovery Curves for Pediatric Burn Survivors: Advances in Patient-Oriented Outcomes. JAMA Pediatr. 2016, 170, 534–542. [Google Scholar] [CrossRef]
- Richard, R.; Santos-Lozada, A.R. Burn Patient Acuity Demographics, Scar Contractures, and Rehabilitation Treatment Time Related to Patient Outcomes: The ACT Study. J. Burn Care Res. 2017, 38, 230. [Google Scholar] [CrossRef] [PubMed]
- Tyack, Z.; Ziviani, J.; Kimble, R.; Plaza, A.; Jones, A.; Cuttle, L.; Simons, M. Measuring the impact of burn scarring on health-related quality of life: Development and preliminary content validation of the Brisbane Burn Scar Impact Profile (BBSIP) for children and adults. Burns 2015, 41, 1405–1419. [Google Scholar] [CrossRef]
- Mason, S.T.; Esselman, P.; Fraser, R.; Schomer, K.; Truitt, A.; Johnson, K. Return to work after burn injury: A systematic review. J. Burn. Care Res. 2012, 33, 101. [Google Scholar] [CrossRef] [PubMed]
- Gerstl, J.; Kilgallon, J.; Nawabi, N.; Sinha, I.; Smith, T.; Pusic, A.; Ranganathan, K. The global macroeconomic burden of burn injuries. Plast. Reconstr. Surg. Glob. Open 2021, 9, 159–160. [Google Scholar] [CrossRef]
- Duke, J.M.; Randall, S.M.; Fear, M.W.; Boyd, J.H.; Rea, S.; Wood, F.M. Understanding the long-term impacts of burn on the cardiovascular system. Burns 2016, 42, 366–374. [Google Scholar] [CrossRef] [PubMed]
- Spronk, I.; van Baar, M.E.; Verheij, R.A.; Panneman, M.J.; Dokter, J.; Polinder, S.; Haagsma, J.A. The burden of disease of fatal and non-fatal burn injuries for the full spectrum of care in the Netherlands. Arch. Public Health 2023, 81, 3. [Google Scholar] [CrossRef]
- Murray, C.J. Quantifying the burden of disease: The technical basis for disability-adjusted life years. Bull. World Health Organ. 1994, 72, 429–445. [Google Scholar] [PubMed]
- Spronk, I.; Edgar, D.W.; van Baar, M.E.; Wood, F.M.; Van Loey, N.E.E.; Middelkoop, E.; Renneberg, B.; Öster, C.; Orwelius, L.; Moi, A.L.; et al. Improved and standardized method for assessing years lived with disability after burns and its application to estimate the non-fatal burden of disease of burn injuries in Australia, New Zealand and the Netherlands. BMC Public Health 2020, 20, 121. [Google Scholar] [CrossRef]
- Melse, J.M.; Essink-Bot, M.L.; Kramers, P.G.; Hoeymans, N. A national burden of disease calculation: Dutch disability-adjusted life-years. Dutch Burden of Disease Group. Am. J. Public Health 2000, 90, 1241. [Google Scholar] [PubMed]
- Sinha, A.; Levine, O.; Knoll, M.D.; Muhib, F.; Lieu, T.A. Cost-effectiveness of pneumococcal conjugate vaccination in the prevention of child mortality: An international economic analysis. Lancet 2007, 369, 389–396. [Google Scholar] [CrossRef]
- Llanos, A.; Hertrampf, E.; Cortes, F.; Pardo, A.; Grosse, S.D.; Uauy, R. Cost-effectiveness of a folic acid fortification program in Chile. Health Policy 2007, 83, 295–303. [Google Scholar] [CrossRef]
- Murray, C.J.; Lopez, A.D.; World Health Organization. The Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries, and Risk Factors in 1990 and Projected to 2020: Summary; World Health Organization: Geneva, Switzerland, 1990. [Google Scholar]
- Pancer, S.M.; Adams, D.A.; Mollard, D.; Solsberg, D.; Tammen, L. Perceived distinctiveness of the handicapped. J. Soc. Psychol. 1979, 108, 275–276. [Google Scholar] [CrossRef] [PubMed]
- Charalampous, P.; Polinder, S.; Wothge, J.; von der Lippe, E.; Haagsma, J.A. A systematic literature review of disability weights measurement studies: Evolution of methodological choices. Arch. Public Health 2022, 80, 91. [Google Scholar] [CrossRef]
- Kim, Y.-E.; Jo, M.-W.; Park, H.; Oh, I.-H.; Yoon, S.-J.; Pyo, J.; Ock, M. Updating Disability Weights for Measurement of Healthy Life Expectancy and Disability-adjusted Life Year in Korea. J. Korean Med. Sci. 2020, 35, e219. [Google Scholar] [CrossRef] [PubMed]
- Kahane, G.; Savulescu, J. The welfarist account of disability. In Disability and Disadvantage; Brownlee, K., Cureton, A., Eds.; Clinical Ethics; Oxford University Press: Oxford, UK, 2009; pp. 14–53. [Google Scholar]
- Barnes, E. Valuing disability, causing disability. Ethics 2014, 125, 88. [Google Scholar] [CrossRef]
- Savulescu, J.; Kahane, G. Disability: A welfarist approach. Clin. Ethics 2011, 6, 45–51. [Google Scholar] [CrossRef]
- Brownlee, K.; Cureton, A.; Cureton, A.S. Disability and Disadvantage; Oxford University Press: Oxford, UK, 2009. [Google Scholar]
- Altman, B.M. Disability definitions, models, classification schemes, and applications. In Handbook of Disability Studies; SAGE Publications: Thousand Oaks, CA, USA, 2001; pp. 97–122. [Google Scholar]
- StewStewart, L.; Moher, D.; Shekelle, P. Why prospective registration of systematic reviews makes sense. Syst. Rev. 2012, 1, 7. [Google Scholar] [CrossRef] [PubMed]
- Tricco, A.C.; Lillie, E.; Zarin, W.; O’Brien, K.K.; Colquhoun, H.; Levac, D.; Straus, S.E. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann. Intern. Med. 2018, 169, 467. [Google Scholar] [CrossRef] [PubMed]
- Zeng, X.; Zhang, Y.; Kwong, J.S.; Zhang, C.; Li, S.; Sun, F.; Du, L. The methodological quality assessment tools for preclinical and clinical studies, systematic review and meta-analysis, and clinical practice guideline: A systematic review. J Evid. Based Med. 2015, 8, 2–10. [Google Scholar] [CrossRef]
- Singh, J. Critical appraisal skills programme. J. Pharmacol. Pharmacother. 2013, 4, 76. [Google Scholar] [CrossRef]
- Ciofi-Silva, C.L.; Rossi, L.A.; Dantas, R.S.; Costa, C.S.; Echevarria-Guanilo, M.E.; Echevarria-Guanilo, M.E.; Ciol, M.A. The life impact of burns: The perspective from burn persons in Brazil during their rehabilitation phase. Disabil. Rehabil. 2010, 32, 431–437. [Google Scholar] [CrossRef]
- Rossi, L.A.; Costa, M.C.; Dantas, R.S.; Ciofi-Silva, C.L.; Lopes, L.M. Cultural meaning of quality of life: Perspectives of Brazilian burn patients. Disabil. Rehabil. 2009, 31, 712–719. [Google Scholar] [CrossRef]
- Russell, W.; Robert, R.S.; Thomas, C.R.; Holzer, C.E., 3rd; Blakeney, P.; Meyer, W.J., 3rd. Self-perceptions of young adults who survived severe childhood burn injury. J. Burn Care Res. 2013, 34, 394–402. [Google Scholar] [CrossRef] [PubMed]
- Dunpath, T.; Chetty, V.; Van Der Reyden, D. The experience of acute burns of the hand—Patients perspectives. Disabil Rehabil. 2015, 37, 892–898. [Google Scholar] [CrossRef] [PubMed]
- Üstün, T.B.; Chatterji, S.; Bickenbach, J.; Kostanjsek, N.; Schneider, M. The International Classification of Functioning, Disability and Health: A new tool for understanding disability and health. Disabil. Rehabil. 2003, 25, 565–571. [Google Scholar] [CrossRef] [PubMed]
- Muò, R.; Schindler, A.; Vernero, I.; Schindler, O.; Ferrario, E.; Frisoni, G.B. Alzheimer’s disease-associated disability: An ICF approach. Disabil. Rehabil. 2005, 27, 1403–1405. [Google Scholar] [CrossRef]
- Granberg, S.; Pronk, M.; Swanepoel, D.W.; Kramer, S.E.; Hagsten, H.; Hjaldahl, J.; Danermark, B. The ICF core sets for hearing loss project: Functioning and disability from the patient perspective. Int. J. Audiol. 2014, 53, 777–786. [Google Scholar] [CrossRef] [PubMed]
- Ptyushkin, P.; Vidmar, G.; Burger, H.; Marincek, C. Use of the International Classification of Functioning, Disability and Health (ICF) in patients with traumatic brain injury. Brain Inj. 2010, 24, 1519–1527. [Google Scholar] [CrossRef] [PubMed]
- Sanchez, J.L.A.; Bastida, J.L.; Martínez, M.M.; Moreno, J.M.M.; Chamorro, J.J. Socio-economic cost and health-related quality of life of burn victims in Spain. Burns 2008, 34, 975–981. [Google Scholar] [CrossRef]
- Simons, M.; Price, N.; Kimble, R.; Tyack, Z. Patient experiences of burn scars in adults and children and development of a health-related quality of life conceptual model: A qualitative study. Burns 2016, 42, 620–632. [Google Scholar] [CrossRef] [PubMed]
- Klein, M.B.; Lezotte, D.C.; Heltshe, S.; Fauerbach, J.; Holavanahalli, R.K.; Rivara, F.P.; Pham, T.; Engrav, L. Functional and Psychosocial Outcomes of Older Adults After Burn Injury: Results from a Multicenter Database of Severe Burn Injury. J. Burn. Care Res. 2011, 32, 66–78. [Google Scholar] [CrossRef]
- Van Baar, M.; Essink-Bot, M.; Oen, I.; Dokter, J.; Boxma, H.; van Beeck, E. Functional outcome after burns: A review. Burns 2006, 32, 1–9. [Google Scholar] [CrossRef]
- Rencken, C.A.; Harrison, A.D.; Aluisio, A.R.; Allorto, N. A Qualitative Analysis of Burn Injury Patient and Caregiver Experiences in Kwazulu-Natal, South Africa: Enduring the Transition to a Post-Burn Life. Eur. Burn. J. 2021, 2, 75–87. [Google Scholar] [CrossRef]
- Tiedtke, C.; de Casterlé, B.D.; de Rijk, A.; Christiaens, M.-R.; Donceel, P. Breast cancer treatment and work disability: Patient perspectives. Breast 2011, 20, 534–538. [Google Scholar] [CrossRef]
- Pistarini, C.; Aiachini, B.; Coenen, M.; Pisoni, C.; Network, O.B.O.I. Functioning and disability in traumatic brain injury: The Italian patient perspective in developing ICF Core Sets. Disabil. Rehabilitation 2011, 33, 2333–2345. [Google Scholar] [CrossRef] [PubMed]
- Jette, A.; Haley, S. Contemporary measurement techniques for rehabilitation outcomes assessment. J. Rehabil. Med. 2005, 37, 339–345. [Google Scholar] [CrossRef]
- Simons, M.; Ziviani, J.; Tyack, Z. Measuring functional outcome in paediatric patients with burns: Methodological considerations. Burns 2004, 30, 411–417. [Google Scholar] [CrossRef] [PubMed]
- Yoder, L.H.; Nayback, A.M.; Gaylord, K. The evolution and utility of the burn specific health scale: A systematic review. Burns 2010, 36, 1143–1156. [Google Scholar] [CrossRef]
- McMullen, K.; Bamer, A.; Ryan, C.M.; Schneider, J.C.; Gibran, N.; Stewart, B.T.; Mroz, T.; Wolf, S.; Amtmann, D. Validation of PROMIS-29 domain scores among adult burn survivors: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study. J. Trauma Inj. Infect. Crit. Care 2022, 92, 213–222. [Google Scholar] [CrossRef]
- Wasiak, J.; McMahon, M.; Danilla, S.; Spinks, A.; Cleland, H.; Gabbe, B. Measuring common outcome measures and their concepts using the International Classification of Functioning, Disability and Health (ICF) in adults with burn injury: A systematic review. Burns 2011, 37, 913–924. [Google Scholar] [CrossRef] [PubMed]
- Klein, M.B.; Lezotte, D.L.; Fauerbach, J.A.; Herndon, D.N.; Kowalske, K.J.; Carrougher, G.J.; Delateur, B.J.; Holavanahalli, R.; Esselman, P.C.; Agustin, T.B.S.; et al. The National Institute on Disability and Rehabilitation Research Burn Model System Database: A Tool for the Multicenter Study of the Outcome of Burn Injury. J. Burn. Care Res. 2007, 28, 84–96. [Google Scholar] [CrossRef] [PubMed]
Health State * | GBD 2019 | GBD 2010 | GBD 2004 |
---|---|---|---|
Burns of <20% TBSA without lower airway burns: short term, with or without treatment. | 0.141 | 0.096 | 0.157 |
Burns of <20% TBSA or <10% TBSA if head or neck, or hands or wrist involved: long term, with or without treatment. | 0.016 | 0.018 | 0.002 |
Burn of ≥20% TBSA: short term, with or without treatment. | 0.314 | 0.333 | 0.455 |
Burn of ≥20% TBSA or ≥10% TBSA if head or neck, or hands or wrist involved: long term, with treatment. | 0.135 | 0.127 | 0.255 |
Burns of ≥20% TBSA or 10% TBSA if head or neck, or hands or wrist involved: long term, without treatment. | 0.455 | 0.438 | 0.255 |
Proposed Definitions | Medical | Social | Welfarist | ICIDH-1 Model | Nagi Model | Verbrugge and Jette | IOM-1 and IOM-2 Model |
---|---|---|---|---|---|---|---|
A measure that deviates from the scientific or biological truths for a species [20]. | Limit or loss of opportunities to take part in community life because of physical and social barriers [21]. | Disability is a harmful state resulting from interactions between a person’s biology and psychology and surrounding environment [22]. | In the context of health experience, any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being [21]. | Pattern of behavior that evolves in situations of long-term or continued impairments that are associated with functional limitations [21]. | Disability is experiencing difficulty doing activities in any domain of life due to a health or physical problem [22]. | The expression of a physical or mental limitation in a social context—the gap between a person’s capabilities and the demands of the environment [21]. |
Database | Total Number of Results |
---|---|
PubMed | 197 |
Embase | 168 |
Cumulated Index to Nursing and Allied Health Literature (CINAHL) | 68 |
Web of Science | 145 |
Psycinfo | 186 |
PhilPaper | 0 |
Author | Intervention(s) | Patient n | Demographics | Assessment Tools | Outcomes Measured |
---|---|---|---|---|---|
Ciofi-Silva et al., 2010 [27] | Semi-structured interview | 44 | Sao Paulo, Brazil | Not Available | Work, leisure, relationships, religious ties, educational activities, habits |
Dunpath et al., 2014 [30] | Semi-structured interview | 5 | Durban, South Africa | International Classification of Function, Disability and Health framework to assess responses to seven open ended questions. | Burn experience, physiotherapy, pain experience, future outlook on life |
Rossi et al., 2009 [28] | Direct observation and semi-structured interviews | 19 | Sao Paulo, Brazil | Not Available | Resuming work and functional ability, meaning of quality of life: having autonomy, body image, having leisure, interpersonal relationships |
Russell et al., 2013 [29] | Semi-structured interview and self-report psychological assessment | 82 | Texas, TX, USA | Tennessee Self Concept Scale, 2nd edition, Young Adult Self Report, and Structured Clinical Interview for DSM-IV Axis I disorders. | Physical function, appearance, sexuality, moral conduct, personal values, academics and work, identity |
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Won, P.; Celie, K.-B.; Rutter, C.; Gillenwater, T.J.; Yenikomshian, H.A. Burn Patient Perspectives on Disability Weights and the Philosophy of Disability: A Gap in the Literature. Eur. Burn J. 2023, 4, 563-572. https://doi.org/10.3390/ebj4040037
Won P, Celie K-B, Rutter C, Gillenwater TJ, Yenikomshian HA. Burn Patient Perspectives on Disability Weights and the Philosophy of Disability: A Gap in the Literature. European Burn Journal. 2023; 4(4):563-572. https://doi.org/10.3390/ebj4040037
Chicago/Turabian StyleWon, Paul, Karel-Bart Celie, Cindy Rutter, T. Justin Gillenwater, and Haig A. Yenikomshian. 2023. "Burn Patient Perspectives on Disability Weights and the Philosophy of Disability: A Gap in the Literature" European Burn Journal 4, no. 4: 563-572. https://doi.org/10.3390/ebj4040037