Health related quality of life assessment in Pakistani paediatric cancer patients using PedsQLTM 4.0 generic core scale and PedsQL™ cancer module

Health and Quality of Life Outcomes

Salma Siddiqui²  Zainab Chaudhry¹ 

[1] Clinical Psychology Unit, Government College University, Lahore, 54000, Pakistan;Department of Behaviour Sciences, National University of Science and Technology, Islamabad, Pakistan

关键词: Cultural significance;    Healthy children;    Parental perception;    Paediatric cancer;    Health related quality of life;    Quality of life;   

Others  :  825625
DOI  :  10.1186/1477-7525-10-52

 received in 2011-12-20, accepted in 2012-05-18,  发布年份 2012

【 摘 要 】

Background

The purpose of the study was to evaluate and compare the HRQOL of paediatric cancer in comparison to the healthy children across age groups, using PedsQL^TM 4.0 Generic Core Scales and the PedsQL™ Cancer Module.

Method

The PedsQL^TM 4.0 Generic Core Scales and PedsQL Cancer Module 3.0 were administered on 56 children including 26 cancer patients and 30 healthy children while employing self and proxy report forms. Furthermore, the results were compared with their healthy comparison group.

Results

The results indicated a significant relationship between HRQOL reports of cancer patients and their parents. However, the mean of paediatric cancer patients is significantly lower as compare to their healthy comparison group. The mean of proxy report is lower overall on both PedsQL and PedsQL cancer module reports.

Conclusion

Conclusively, overall HRQOL of cancer patients was lower than healthy children but it is quite similar to their parents’ perception. Whereas, the parental mean on PedsQL and PedsQL 3.0 Cancer Module are significantly low. The study indicated a marked difference between cancer patients and healthy children’s HRQOL perception and unfortunately in country like Pakistan where cancer is on increase, no significant work has yet been done to explore this area of research. The present study highlighted the need to focus on the particular psychological health services required to serve the physically challenged population.

【 授权许可】

   
2012 Chaudhry and Siddiqui; licensee BioMed Central Ltd.

【 图 表 】

Figure 1 .

【 参考文献 】

• [1]Donald A: What is quality of life. What is……? Series. Hayward Medical Communication 2009. http://www.medicine.ox.ac.uk/bandolier/painres/download/whatis/WhatisQOL.pdf webcite
• [2]Varni JW, Seid M, Rode CA: PedQLTM 4.0: Measurement model for the pediatric quality of life inventoryTM. Med Care 1999, 37:126-139.
• [3]World Health Organization (WHO): Constitution of the World Health Organization: basic document. Geneva, Switzerland: World Health Organization; 1948.
• [4]Matza LS, Swesen AR, Flood EM, Secnik K, Leidy NK: Assessment of Health Related Quality of Life in children: A review of methodological & regularity issues. Value Health 2004, 7:79-92.
• [5]Parson SK, Brown AP: Evaluation of quality of life of childhood cancer servivors: A methodological Conundrum. Med Pediatr Oncol Suppl 1998, 1:46-53.
• [6]Hinds PS: Quality of life in children and adolescents with cancer. Semin Oncol Nurs 1990, 6:285-291.
• [7]Gotay CC, Korn EL, McCabe MS, et al.: Quality-of-life assessment in cancer treatment protocols: research issues in protocol development. J Natl Cancer Inst 1992, 84:575-579.
• [8]Elkateb N, Ibrahim AS, Raid S: Quality of life of adolescent Cancer Patients as Perceived by Patients, Nurses & Mothers. J Egypt Nat Canc Inst 2002, 14(4):343-348.
• [9]Varni JW, Limbers CA, Burwinkle TM: Impaired Health Related Quality of Life in children and adolescents with chronic conditions: A Comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQLTM 4.0 Generic Core Scales. Health Qual Life Outcomes 2007, 5:1-15. BioMed Central Full Text
• [10]Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A: The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998, 82:1184-1196.
• [11]Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM: The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med 1998, 21:179-204.
• [12]Lau JT, Yu XN, Chu Y, Shing MM, Wong EM, Leung TF, Li CK, Fok TF, Mak WW: Validation of the Chinese Version of the Pediatric Quality of Life Inventory™ (PedsQL™) Cancer Module. J Ped Psy 2010, 35:99-109.
• [13]Tsuji N, Kakee N, Ishida Y, Asami K, Tabuchi K, Nakadate H, Iwai T, Maeda M, Okamura J, Kazama T, Terao Y, Ohyama W, Yuza Y, Kaneko T, Manabe A, Kobayashi K, Kamibeppu K, Matsushima E: Validation of the Japanese Version of the Pediatric Quality of Life Inventory™ (PedsQL™) Cancer Module. Health Qual Life Outcomes 2011, 10:9.
• [14]Tanir MK, Kuguoglu S: Turkish Validity and Reliability of a Pediatric Quality of Life Cancer Module for Children Aged 8-12 and Parents. Asian Pacific J Cancer Prevention 2011, 12:125-130.
• [15]Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ: Measurement Properties of the Brazilian Version of the Pediatric Quality of Life Inventory™ (PedsQL™) Cancer Module Scale. Health Qual Life Outcomes 2008, 6:1-11. BioMed Central Full Text
• [16]Varni JW, Seid M, Kurtin PS: PedsQLTM 4.0: Relaibility and validity of the pediatric quality of life inventory TM Generic Core Scales in healthy and patient population. Med Care 2001, 39:800-812.
• [17]Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002, 94:2090-106.
• [18]Varni JW, Limbers CA, Burwinkle TM: Parents Proxy report of their children’s health related quality of life: An analysis of 13,878 parents’ reliability and validity across age sub groups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007, 5:1-10. BioMed Central Full Text
• [19]Mapi Research Institute Lyon, France; www.mapi-institute.com webcite
• [20]Manne S, Miller D, Meyers P, Wollner N, Steinherz P, Redd WH: Depressive Symptoms Among Parents of Newly Diagnosed Children With Cancer: A 6-Month Follow-Up study. Child Health Care 1996, 25:191-209.
• [21]Norberg AL: Stress and coping in parents of children with cancer. PhD Thesis. Stockholm: Department of Public health sciences, Division of psychosocial factors and Department of women and child health, Childhood cancer research unit; 2004.
• [22]Vance YH, Jenny ME, Eiser C, Morse RC: Issues in measuring quality of life in childhood cancer: Measures, Proxies & Parental mental Health (abstract). J Child Psychol Psychiatry 2001, 42:661-667.
• [23]Grootenhuis MA, Last BF: Predictors of parental emotional adjustment to childhood cancer. Psycho-Oncol 1997, 6:115-128.
• [24]Woodgate RL: A different way of being: Adolescents’ experience with cancer. Cancer oncology Nursing Journal 2003, 13:142-50.
• [25]Varni JW, Burwinkle TM, Lane MM: Health related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health Qual life outcomes 2005, 3:1-9. BioMed Central Full Text