Variation of health-related quality of life assessed by caregivers and patients affected by severe childhood infections

BMC Pediatrics

Yot Teerawattananon²  Yoel Lubell¹  John Cairns⁴  Pattara Leelahavarong²  Waranya Rattanavipapong²  Virasakdi Chongsuvivatwong³  Vorasith Sornsrivichai³  Wantanee Kulpeng³ 

[1] Mahidol Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand;Health Intervention and Technology Assessment Program (HITAP), Ministry of Public Health, Nonthaburi, Thailand;Epidemiology Unit, Faculty of Medicine, Prince of Songkla University, Songkla, Thailand;London School of Hygiene and Tropical Medicine, London, United Kingdom

关键词: Proxy;    Utility;    Health-related quality of life;    Child;    Chronic conditions;    Infection;   

Others  :  1144617
DOI  :  10.1186/1471-2431-13-122

 received in 2013-04-18, accepted in 2013-08-07,  发布年份 2013

【 摘 要 】

Background

The agreement between self-reported and proxy measures of health status in ill children is not well established. This study aimed to quantify the variation in health-related quality of life (HRQOL) derived from young patients and their carers using different instruments.

Methods

A hospital-based cross-sectional survey was conducted between August 2010 and March 2011. Children with meningitis, bacteremia, pneumonia, acute otitis media, hearing loss, chronic lung disease, epilepsy, mild mental retardation, severe mental retardation, and mental retardation combined with epilepsy, aged between five to 14 years in seven tertiary hospitals were selected for participation in this study. The Health Utilities Index Mark 2 (HUI2), and Mark 3 (HUI3), and the EuroQoL Descriptive System (EQ-5D) and Visual Analogue Scale (EQ-VAS) were applied to both paediatric patients (self-assessment) and caregivers (proxy-assessment).

Results

The EQ-5D scores were lowest for acute conditions such as meningitis, bacteremia, and pneumonia, whereas the HUI3 scores were lowest for most chronic conditions such as hearing loss and severe mental retardation. Comparing patient and proxy scores (n = 74), the EQ-5D exhibited high correlation (r = 0.77) while in the HUI2 and HUI3 patient and caregiver scores were moderately correlated (r = 0.58 and 0.67 respectively). The mean difference between self and proxy-assessment using the HUI2, HUI3, EQ-5D and EQ-VAS scores were 0.03, 0.05, -0.03 and -0.02, respectively. In hearing-impaired and chronic lung patients the self-rated HRQOL differed significantly from their caregivers.

Conclusions

The use of caregivers as proxies for measuring HRQOL in young patients affected by pneumococcal infection and its sequelae should be employed with caution. Given the high correlation between instruments, each of the HRQOL instruments appears acceptable apart from the EQ-VAS which exhibited low correlation with the others.

【 授权许可】

   
2013 Kulpeng et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

【 参考文献 】

• [1]Griebsch I, Coast J, Brown J: Quality-adjusted life-years lack quality in pediatric care: a critical review of published cost-utility studies in child health. Pediatrics 2005, 115:e600-e614.
• [2]Klassen AF, Landgraf JM, Lee SK, Barer M, Raina P, Chan HW, Matthew D, Brabyn D: Health related quality of life in 3 and 4 year old children and their parents: preliminary findings about a new questionnaire. Health Qual Life Outcomes 2003, 1:81. BioMed Central Full Text
• [3]Bushnell DM, Martin ML, Ricci JF, Bracco A: Performance of the EQ-5D in patients with irritable bowel syndrome. Value Health 2006, 9:90-97.
• [4]Schweikert B, Hahmann H, Leidl R: Validation of the EuroQol questionnaire in cardiac rehabilitation. Heart 2006, 92:62-67.
• [5]Szecket N, Medin G, Furlong WJ, Feeny DH, Barr RD, Depauw S: Preliminary translation and cultural adaptation of Health Utilities Index questionnaires for application in Argentina. Int J Cancer Suppl 1999, 12:119-124.
• [6]Glaser AW, Furlong W, Walker DA, Fielding K, Davies K, Feeny DH, Barr RD: Applicability of the Health Utilities Index to a population of childhood survivors of central nervous system tumours in the U.K. Eur J Cancer 1999, 35:256-261.
• [7]Drummond M: Introducing economic and quality of life measurements into clinical studies. Ann Med 2001, 33:344-349.
• [8]David A, Alan G, Andrew S, Richard L: Comparison of direct and indirect methods of estimating health state utilities for resource allocation: review and empirical analysis. BMJ 2009, 339:b2688.
• [9]Wee HL, Machin D, Loke WC, Li SC, Cheung YB, Luo N, Feeny D, Fong KY, Thumboo J: Assessing differences in utility scores: a comparison of four widely used preference-based instruments. Value Health 2007, 10:256-265.
• [10]Oostenbrink R, HA AM, Essink-Bot ML: The EQ-5D and the health utilities index for permanent sequelae after meningitis: a head-to-head comparison. J Clin Epidemiol 2002, 55:791-799.
• [11]Bennett JE, Summer W II, Downs SM, Jaffe DM: Parents’ Utilities for outcomes of occult bacteremia. Arch Pediatr Adolesc Med 2000, 154:43-48.
• [12]Baca CB, Vickrey BG, Hays RD, Vassar SD, Berg AT: Differences in child versus parent reports of the child’s health-related quality of life in children with epilepsy and healthy siblings. Value Health 2010, 13:778-786.
• [13]Eiser C, Morse R: Can parents rate their child’s health-related quality of life? results of a systematic review. Qual Life Res 2001, 10:347-357.
• [14]Klaassen RJ, Barr RD, Hughes J, Rogers P, Anderson R, Grundy P, Ali SK, Yanofsky R, Abla O, Silva M, et al.: Nurses provide valuable proxy assessment of the health-related quality of life of children with Hodgkin disease. Cancer 2010, 116:1602-1607.
• [15]Loonen HJ, Derkx BH, Koopman HM, Heymans HS: Are parents able to rate the symptoms and quality of life of their offspring with IBD? Inflamm Bowel Dis 2002, 8:270-276.
• [16]Sung L, Young NL, Greenberg ML, McLimont M, Samanta T, Wong J, Rubenstein J, Ingber S, Doyle JJ, Feldman BM: Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation method. J Clin Epidemiol 2004, 57:1161-1166.
• [17]Stade BC, Stevens B, Ungar WJ, Beyene J, Koren G: Health-related quality of life of Canadian children and youth prenatally exposed to alcohol. Health Qual Life Outcomes 2006, 4:81. BioMed Central Full Text
• [18]Bureau of Epidemiology: Case definitions for infectious conditions in Thailand, 2001. 1st edition. Bangkok: The Express Transportation Organization of Thailand (ETO); 2001.
• [19]Davison SN, Jhangri GS, Feeny DH: Comparing the health utilities index mark 3 (HUI3) with the short form-36 preference-based SF-6D in chronic kidney disease. Value Health 2009, 12:340-345.
• [20]Guo N, Marra CA, Marra F, Moadebi S, Elwood RK, Fitzgerald JM: Health state utilities in latent and active tuberculosis. Value Health 2008, 11:1154-1161.
• [21]Harrison MJ, Davies LM, Bansback NJ, McCoy MJ, Verstappen SM, Watson K, Symmons DP: The comparative responsiveness of the EQ-5D and SF-6D to change in patients with inflammatory arthritis. Qual Life Res 2009, 18:1195-1205.
• [22]Zhou HJ, So JB, Yong WP, Luo N, Zhu F, Naidoo N, Li SC, Yeoh KG: Validation of the functional assessment of cancer therapy-gastric module for the Chinese population. Health Qual Life Outcomes 2012, 10:145. BioMed Central Full Text
• [23]Dyer MT, Goldsmith KA, Sharples LS, Buxton MJ: A review of health utilities using the EQ-5D in studies of cardiovascular disease. Health Qual Life Outcomes 2010, 8:13. BioMed Central Full Text
• [24]Horsman J, Furlong W, Feeny D, Torrance G: The health utilities index (HUI): concepts, measurement properties and applications. Health Qual Life Outcomes 2003, 1:54. BioMed Central Full Text
• [25]Questionnaire development, translations and support. http://www.healthutilities.com/ webcite
• [26]Tongsiri S, Cairns J: Estimating population-based values for EQ-5D health states in Thailand. Value Health 2011, 14:1142-1145.
• [27]Health Utilities Inc: Procedures manual. Ontario; 2002.
• [28]R Development Core Team: R: A language and environment for statistical computing. Book R: A language and environment for statistical computing 2011.
• [29]Samsa G, Edelman D, Rothman ML, Williams GR, Lipscomb J, Matchar D: Determining clinically important differences in health status measures: a general approach with illustration to the health utilities index mark II. Pharmacoeconomics 1999, 15:141-155.
• [30]Naglie G, Tomlinson G, Tansey C, Irvine J, Ritvo P, Black SE, Freedman M, Silberfeld M, Krahn M: Utility-based quality of life measures in Alzheimer’s disease. Qual Life Res 2006, 15:631-643.
• [31]Pickard AS, Johnson JA, Feeny DH, Shuaib A, Carriere KC, Nasser AM: Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and health utilities index. Stroke 2004, 35:607-612.
• [32]Grutters JP, Joore MA, van der Horst F, Verschuure H, Dreschler WA, Anteunis LJ: Choosing between measures: comparison of EQ-5D, HUI2 and HUI3 in persons with hearing complaints. Qual Life Res 2007, 16:1439-1449.
• [33]Wee HL, Li SC, Xie F, Zhang XH, Luo N, Feeny D, Cheung YB, Machin D, Fong KY, Thumboo J: Validity, feasibility and acceptability of time trade-off and standard gamble assessments in health valuation studies: a study in a multiethnic Asian population in Singapore. Value Health 2008, 11(Suppl 1):S3-S10.
• [34]Doctor JN, Zoellner LA, Feeny NC: Predictors of health-related quality-of-life utilities among persons with posttraumatic stress disorder. Psychiatr Serv 2011, 62:272-277.
• [35]Sinno H, Thibaudeau S, Tahiri Y, Mok E, Christodoulou G, Lessard L, Williams B, Lin SJ: Utility assessment of body contouring after massive weight loss. Aesthetic Plast Surg 2011, 35:724-730.
• [36]Sun X, Zhang S, Wang N, Liang Y, Wang L, Fan S, Sun L: Utility assessment among patients of primary angle closure/glaucoma in China: a preliminary study. Br J Ophthalmol 2009, 93:871-874.
• [37]Bess FH: The role of generic health-related quality of life measures in establishing audiological rehabilitation outcomes. Ear Hear 2000, 21:74S-79S.
• [38]Joore MA, Brunenberg DE, Chenault MN, Anteunis LJ: Societal effects of hearing aid fitting among the moderately hearing impaired. Int J Audiol 2003, 42:152-160.
• [39]Vuorialho A, Karinen P, Sorri M: Effect of hearing aids on hearing disability and quality of life in the elderly. Int J Audiol 2006, 45:400-405.
• [40]Carroll AE, Downs SM: Improving decision analyses: parent preferences (utility values) for pediatric health outcomes. J Pediatr 2009, 155:21-25. 25 e21-25
• [41]Petrou S, McCann D, Law CM, Watkin PM, Worsfold S, Kennedy CR: Health status and health-related quality of life preference-based outcomes of children who are aged 7 to 9 years and have bilateral permanent childhood hearing impairment. Pediatrics 2007, 120:1044-1052.
• [42]Sakthong P: Measurement of clinical-effect: utility. J Med Assoc Thai 2008, 91(2):S43-S52.
• [43]Mohan H, Ryan J, Whelan B, Wakai A: The end of the line? the visual analogue scale and verbal numerical rating scale as pain assessment tools in the emergency department. Emerg Med J 2010, 27:372-375.
• [44]BioPsychoSocial assessment tools for the elderly - assessment summary sheet. http://instruct.uwo.ca/kinesiology/9641/Assessments/Biological/EQ-5D.html webcite
• [45]McDonough CM, Grove MR, Tosteson TD, Lurie JD, Hilibrand AS, Tosteson AN: Comparison of EQ-5D, HUI, and SF-36-derived societal health state values among spine patient outcomes research trial (SPORT) participants. Qual Life Res 2005, 14:1321-1332.
• [46]Gibbons E, Fitzpatrick R: A stuctured review of patient-reported outcome measures for people with asthma:an update 2009. In Book A stuctured review of patient-reported outcome measures for people with asthma:an update 2009. Patient-reported Outcome Measurement Group, Department of Public Health, University of Oxford; 2009.
• [47]Legood R, Coen PG, Knox K, Viner RM, El Bashir H, Christie D, Patel BC, Booy R: Health related quality of life in survivors of pneumococcal meningitis. Acta Paediatr 2009, 98:543-547.
• [48]Speyer E, Herbinet A, Vuillemin A, Chastagner P, Briancon S: Agreement between children with cancer and their parents in reporting the child’s health-related quality of life during a stay at the hospital and at home. Child Care Health Dev 2009, 35:489-495.