Abstract
Background:
Type 1 diabetes (T1D) is a serious chronic illness that imposes significant morbidity and mortality with a major impact on the quality of life (QoL) that became a core issue in diabetes care. Understanding the effect of diabetes on QoL is important for day-to-day clinical management and also for public health policy initiatives aiming at improving health outcomes for those with diabetes. The objective of the study was to assess the QoL in adolescents with T1D and assess the applicability of the use of the “Quality of Life for Youth” questionnaire at the Diabetes, Endocrine and Metabolism Pediatric Unit (DEMPU) clinic.
Methods:
One hundred and fifty adolescents (82 males and 68 females) (10–18 years), with T1D of at least 1 years’ duration, completed the questionnaire that evaluated symptoms related to diabetes, treatment, activities, parent issues, worries about diabetes and health perception. Higher scores indicated a more negative impact of diabetes and poorer QoL.
Results:
Males showed a significantly better mean QoL score than females (p=0.004). Different age groups showed different QoL scores (p=0.047). Urban adolescents had a better QoL than rural counterparts (p=0.02). Adolescents with poor QoL had generally lower educational level (p=0.02). Better metabolic control was associated with a better QoL (p=0.01). However, duration of diabetes and body mass index (BMI) had no statistically significant effect on QoL.
Conclusions:
QoL had a variable significant association with certain socio-demographic and clinical characteristics of diabetics (sex, residence, educational level as well as metabolic control).
Acknowledgments
Diabetes clinic, Diabetes, Endocrine and Metabolism Pediatric Unit, Cairo University; Diabetes education team, Children Hospital, Cairo University; Department of Public Health and Community Medicine for the collaborative work. Special thanks to Novo Nordisk for approving the use of the translated Arabic version of the QoL youth tool. Thanks to the patients and their parents who participated in this questionnaire.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Research funding: None declared.
Employment or leadership: None declared.
Honorarium: None declared.
Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
References
1. Silverstein J, Klingensmith G, Copeland K, Plotnick L, Kaufman F, et al. Care of children and adolescents with type 1 diabetes: a statement of the American Diabetes Association. Diabetes Care 2005;28:186–212.10.2337/diacare.28.1.186Search in Google Scholar
2. Soltesz G, Patterson CC, Dahlquist G. Worldwide childhood type 1 diabetes incidence–what can we learn from epidemiology? Pediatr Diabetes 2007;8:6–14.10.1111/j.1399-5448.2007.00280.xSearch in Google Scholar
3. Faulkner MS. Quality of life for adolescents with type I diabetes: parental and youth perspectives. Paediatr Nurs 2003;29:362–8.Search in Google Scholar
4. Hart HE, Bilo HJ, Redekop WK, Stolk RP, Assink JH, et al. Quality of life of patients with type 1 diabetes mellitus. Qual Life Res 2003;12:1089–97.10.1023/A:1026197119569Search in Google Scholar
5. Eiser C, Morse R. The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 2001;22:248–56.10.1097/00004703-200108000-00007Search in Google Scholar
6. Cameron FJ. The impact of diabetes on health-related quality of life in children and adolescents. Pediatr Diabetes 2003;4:132–6.10.1034/j.1399-5448.2003.00019.xSearch in Google Scholar
7. Sawyer MG, Reynolds KE, Couper JJ, French DJ, Kennedy D, et al. A two-year prospective study of the health-related quality of life of children with chronic illness: the parent’s perspective. Qual Life Res 2005;14:395–405.10.1007/s11136-004-0786-ySearch in Google Scholar
8. Donald A. What is Quality of life? Hayward Medical Communication. 2010:1 [cited July 2, 2010]. Available from: http://www.bandolier.org.uk/painres/download/whatis/WhatisQOL.pdf.Search in Google Scholar
9. Von Steinbuchel N, Lishetzke T, Gurny M, Eid M. Assessing quality of life in older people: psychometric properties of the WHOQOL-BREF. Eur J Ageing 2006;3:116–22.10.1007/s10433-006-0024-2Search in Google Scholar
10. Aanstoot HJ, Anderson BJ, Daneman D, Danne T, Donaghue K, et al. The global burden of youth diabetes: perspectives and potential. Pediatr Diabetes 2007;8:1–44.Search in Google Scholar
11. Rubin RR. Diabetes and quality of life. Diabetes Spectrum 2000;13:2000–21.10.1002/(SICI)1520-7560(199905/06)15:3<205::AID-DMRR29>3.0.CO;2-OSearch in Google Scholar
12. Nieuwesteeg A, Pouwer F, van der Kamp R, van Bakel H, Aanstoot HJ, et al. Quality of life of children with type 1 diabetes: a systematic review. Curr Diabetes Rev 2012;8:434–43.10.2174/157339912803529850Search in Google Scholar
13. Moussa MA, Alsaeld M, Abdella N, Refai TM, Al-Sheikh N, et al. Social and psychological characteristics of Kuwaiti children and adolescents with type 1 diabetes. Soc Sci Med 2005;60:1835–44.10.1016/j.socscimed.2004.08.018Search in Google Scholar
14. Varni JW, Burnwinkle TM, Seid M, Skarr D. The PedsQ 4.0 as a pediatric population health measure: feasibility, reliability and validity. Ambul Pediatr 2003;3:329–41.10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2Search in Google Scholar
15. Aguiar CC, Vieira AP, Carvalho AF, Montenegro-Junior RM. Assessment instruments for a Health-Related Quality of Life in diabetes mellitus. Arq Bras Endocrinol Metabol 2008;52:931–9.10.1590/S0004-27302008000600004Search in Google Scholar
16. Skinner TC, Hoey H, McGee HM, Skovlund SE. A short form of the Diabetes Quality of life for Youth questionnaire: exploratory and confirmatory analysis in a sample of 2,077 young people with type 1 diabetes mellitus. Diabetologia 2006;49:621–8.10.1007/s00125-005-0124-0Search in Google Scholar
17. Ingersoll GM, Marrero DG. A modified quality-of-life measure for youths: psychometric properties. Diabetes Educ 1991;17:114–8.10.1177/014572179101700219Search in Google Scholar
18. Kourkoutas E, Maria Georgiadi M, Stefanos Plexousakis S. Quality of life of children with chronic illnesses: a review of the literature. Procedia Soc Behav Sci 2010;2:4763–7.10.1016/j.sbspro.2010.03.765Search in Google Scholar
19. Ghali I, Salah N, Hussien F, Erfan M, El-Ruby M, et al. Recently published in: Sartorio, A., Buckler, J.M.H. and Marazzi, N. (2008) Egyptian Growth Curves 2002 for Infants, Children and Adolescents. Ferring. Nordwijk, The Netherlands.Search in Google Scholar
20. Tanner JM. Growth at adolescence, 2nd ed. Oxford, England: Blackwell Scientific, 1962.Search in Google Scholar
21. Vanelli M, Chiarelli F, Chiari G, Tumini S. Relationship between metabolic control and quality of life in adolescents with type 1 diabetes. Report from two Italian centers for the management of diabetes in childhood. Acta Biomed 2003;74:13–7.Search in Google Scholar
22. Kalyva E, Malakonaki E, Eiser C, Mamoulakis D. Health-related quality of life (HRQoL) of children with type 1 diabetes mellitus (T1DM): self and parental perceptions. Pediatr Diabetes 2011;12:34–40.10.1111/j.1399-5448.2010.00653.xSearch in Google Scholar
23. Kakleas K, Kandyla B, Karayianni C, Karavanaki K. Psychosocial problems in adolescents with type 1 diabetes mellitus. Diabetes Metab 2009;35:339–50.10.1016/j.diabet.2009.05.002Search in Google Scholar
24. Samardzic M, Tahirovic H, Popovic N, Popovic-Samardzic M. Health-related quality of life in children and adolescents with type 1 diabetes mellitus from Montenegro: relationship to metabolic control. J Pediatr Endocrinol Metab 2016;29: 663–8.10.1515/jpem-2015-0420Search in Google Scholar
25. Bryden KS, Neil A, Mayou RA, Peveler RC, Fairburn CG, et al. Eating habits, body weight, and insulin misuse: a longitudinal study of teenagers and young adults with type 1 diabetes. Diabetes Care 1999;22:1956–60.10.2337/diacare.22.12.1956Search in Google Scholar
26. Daneman D, Olmsted M, Rydall A, Maharaj S, Rodin G. Eating disorders in young women with type 1 diabetes: prevalence, problems and prevention. Horm Res 1998;50(Suppl 1):79–86.10.1159/000053110Search in Google Scholar
27. Abdul-Rasoul M, AlOtaibi F, Abdulla A, Rahme Z, AlShawaf F. Quality of life of children and adolescents with Type 1 Diabetes in Kuwait. Med Princ Pract 2013;22:379–84.10.1159/000347052Search in Google Scholar PubMed PubMed Central
28. Emmanouilidou E, Galli-Tsinopoulou A, Karavatos A, Nousia-Arvanitakis S. Quality of life of children and adolescents with diabetes of Northern Greek origin. Hippokratia 2008;12:168–75.Search in Google Scholar
29. Wagner J, Abbott G, Lett S. Age related differences in individual quality of life domains in youth with type 1 diabetes. Health Qual Life Outcomes 2004;2:54.10.1186/1477-7525-2-54Search in Google Scholar PubMed PubMed Central
30. Thommasen HV, Berkowitz J, Thommasen AT, Michalos AC. Understanding relationships between diabetes mellitus and health-related quality of life in a rural community. Rural Remote Health 2005;5:441.10.22605/RRH441Search in Google Scholar
31. Gautam Y, Sharma AK, Agarwal AK, Bhatnagar MD, Trehan RR. A cross sectional study of QOL of patients with diabetes at tertiary care hospitals in Delhi. Indian J Community Med 2009;34:346–50.10.4103/0970-0218.58397Search in Google Scholar PubMed PubMed Central
32. Grey M, Boland EA, Yu C, Sullivan-Bolyai S, Tamborlane WV. Personal and family factors associated with quality of life in adolescents with diabetes. Diabetes Care 1998;21:909–14.10.2337/diacare.21.6.909Search in Google Scholar PubMed
33. Faulkner MS, Chang LI. Family influence on self-care, quality of life, and metabolic control in school-age children and adolescents with type 1 diabetes. J Pediatr Nurs 2007;22:59–68.10.1016/j.pedn.2006.02.008Search in Google Scholar PubMed
34. Botello-Harbaum M, Nansel T, Haynie DL, Iannotti RJ, Simons-Morton B. Responsive parenting is associated with improved type 1 diabetes-related quality of life. Child Care Health Dev 2008;34:675–81.10.1111/j.1365-2214.2008.00855.xSearch in Google Scholar PubMed PubMed Central
35. Marrero DG, Guare JC, Vandagriff JL, Fineberg NS. Fear of hypoglycemia in the parents of children and adolescents with diabetes: maladaptive or healthy response? Diabetes Educ 1997;23:281–6.10.1177/014572179702300306Search in Google Scholar PubMed
36. Nordfeldt S, Ludvigsson J. Fear and other disturbances of severe hypoglycaemia in children and adolescents with type 1 diabetes mellitus. J Pediatr Endocrinol Metab 2005;18:83–91.10.1515/JPEM.2005.18.1.83Search in Google Scholar PubMed
37. Guttmann-Bauman I, Flaherty BP, Strugger M, McEvoy RC. Metabolic control and quality-of-life self-assessment in adolescents with IDDM. Diabetes Care 1998;21:915–8.10.2337/diacare.21.6.915Search in Google Scholar PubMed
38. Hoey H, Aanstoot HJ, Chiarelli F, Daneman D, Danne T, et al. Good metabolic control is associated with better quality of life in 2,101 adolescents with type 1 diabetes. Diabetes Care 2001;24:1923–8.10.2337/diacare.24.11.1923Search in Google Scholar PubMed
39. Jacobson AM. Impact of improved glycemic control on quality of life in patients with diabetes. Endocr Pract 2004;10:502–8.10.4158/EP.10.6.502Search in Google Scholar PubMed
40. Huang GH, Palta M, Allen C, LeCaire T, D’Alessio D. Self-rated health among young people with type 1 diabetes in relation to risk factors in a longitudinal study. Am J Epidemiol 2004;159:364–72.10.1093/aje/kwh055Search in Google Scholar PubMed
41. Ausili E, Tabacco F, Focarelli B, Padua L, Crea F, et al. Multidimensional study on quality of life in children with type 1 diabetes. Eur Rev Med Pharmacol Sci. 2007;11:249–55.Search in Google Scholar
42. Ingerski LM, Laffel L, Drotar D, Repaske D, Hood KK. Correlates of glycemic control and quality of life outcomes in adolescents with type 1 diabetes. Pediatr Diabetes 2010;11:563–71.10.1111/j.1399-5448.2010.00645.xSearch in Google Scholar PubMed
43. Laffel LM, Vangsness L, Connell A, Goebel-Fabbri A, Butler D, et al. Impact of ambulatory, family-focused teamwork intervention on glycemic control in youth with type 1 diabetes. J Pediatr 2003;142:409–16.10.1067/mpd.2003.138Search in Google Scholar PubMed
44. O’Neil KJ, Jonnalagadda SS, Hopkins BL, Kicklighter JR. Quality of life and diabetes knowledge of young persons with type 1 diabetes: influence of treatment modalities and demographics. J Am Diet Assoc 2005;105:85–91.10.1016/j.jada.2004.10.010Search in Google Scholar PubMed
45. Graue M, Wentzel-Larsen T, Hanestad BR, Sovik O. Health-related quality of life and metabolic control in adolescents with diabetes: the role of parental care, control, and involvement. J Pediatr Nurs 2005;20:373–82.10.1016/j.pedn.2005.08.005Search in Google Scholar PubMed
46. Issa BA, Baiyewu O. Quality of life of patients with diabetes mellitus in a Nigerian teaching hospital, Hong Kong. J Psychiatry 2006;16:27–33.Search in Google Scholar
47. Sparring V, Nyström L, Wahlström R, Jonsson PM, Ostman J, et al. Diabetes duration and health-related quality of life in individuals with onset of diabetes in the age group 15–34 years – a Swedish population-based study using EQ-5D. BMC Public Health 2013;13:377.10.1186/1471-2458-13-377Search in Google Scholar PubMed PubMed Central
©2017 Walter de Gruyter GmbH, Berlin/Boston
Articles in the same Issue
- Frontmatter
- Review
- Adrenocortical neoplasms in adulthood and childhood: distinct presentation. Review of the clinical, pathological and imaging characteristics
- Original Articles
- Assessment of health-related quality of life in Egyptian adolescents with type 1 diabetes: DEMPU survey
- Non-HDL-cholesterol and C-reactive protein in children and adolescents with type 1 diabetes
- Nutritional status and metabolic profile in neurologically impaired pediatric surgical patients
- Vascular risk factors are associated with retinal arteriolar narrowing and venular widening in children and adolescents with type 1 diabetes
- Are aromatase inhibitors in boys with predicted short stature and/or rapidly advancing bone age effective and safe?
- Increased prevalence of bicuspid aortic valve in Turner syndrome links with karyotype: the crucial importance of detailed cardiovascular screening
- Resting energy expenditure in girls with Turner syndrome
- AMH levels in girls with various pubertal problems
- Bone age in unilateral spastic cerebral palsy: is there a correlation with hand function and limb length?
- Novel germline mutation (Leu512Met) in the thyrotropin receptor gene (TSHR) leading to sporadic non-autoimmune hyperthyroidism
- A novel DAX-1 mutation in two male siblings presenting with precocious puberty and late-onset hypogonadotropic hypogonadism
- Case Reports
- Adrenarche unmasks compound heterozygous 3β-hydroxysteroid dehydrogenase deficiency: c.244G>A (p.Ala82Thr) and the novel 931C>T (p.Gln311*) variant in a non-salt wasting, severely undervirilised 46XY
- Three cases of Gordon syndrome with dominant KLHL3 mutations
- Unexplained cyanosis caused by hepatopulmonary syndrome in a girl with APECED syndrome
Articles in the same Issue
- Frontmatter
- Review
- Adrenocortical neoplasms in adulthood and childhood: distinct presentation. Review of the clinical, pathological and imaging characteristics
- Original Articles
- Assessment of health-related quality of life in Egyptian adolescents with type 1 diabetes: DEMPU survey
- Non-HDL-cholesterol and C-reactive protein in children and adolescents with type 1 diabetes
- Nutritional status and metabolic profile in neurologically impaired pediatric surgical patients
- Vascular risk factors are associated with retinal arteriolar narrowing and venular widening in children and adolescents with type 1 diabetes
- Are aromatase inhibitors in boys with predicted short stature and/or rapidly advancing bone age effective and safe?
- Increased prevalence of bicuspid aortic valve in Turner syndrome links with karyotype: the crucial importance of detailed cardiovascular screening
- Resting energy expenditure in girls with Turner syndrome
- AMH levels in girls with various pubertal problems
- Bone age in unilateral spastic cerebral palsy: is there a correlation with hand function and limb length?
- Novel germline mutation (Leu512Met) in the thyrotropin receptor gene (TSHR) leading to sporadic non-autoimmune hyperthyroidism
- A novel DAX-1 mutation in two male siblings presenting with precocious puberty and late-onset hypogonadotropic hypogonadism
- Case Reports
- Adrenarche unmasks compound heterozygous 3β-hydroxysteroid dehydrogenase deficiency: c.244G>A (p.Ala82Thr) and the novel 931C>T (p.Gln311*) variant in a non-salt wasting, severely undervirilised 46XY
- Three cases of Gordon syndrome with dominant KLHL3 mutations
- Unexplained cyanosis caused by hepatopulmonary syndrome in a girl with APECED syndrome