Abstract Objective To investigate the current quality of life in children with chronic diseases, and to explore the impact of transition readiness on quality of life.Methods A total of 332 children with chronic diseases from two children's hospitals in Shanghai, China were enrolled. A self-designed demographic questionnaire, Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQLTM4.0), and Self-Management and Transition to Adulthood with Rx=Treatment (STARx) Questionnaire were used to evaluate transition readiness and quality of life.Results The children with chronic diseases had a significantly lower total quality of life score than the national norm (74.66±15.85 vs 81.81±12.03;P<0.001). Doctor-patient communication and health care responsibilities (the child's abilities to take care of himself/herself and adaptation to the process of diagnosis and treatment from childhood to adulthood) were positively correlated with the scores on each dimension of quality of life (P<0.05). Duration of disease, time of absence from school within six months, and the number of types of drugs taken orally were negatively correlated with the total quality of life score (rs=-0.172, -0.236, and -0.280;P<0.05). The residence (urban or rural area), monthly family income, parents' educational level, and father's occupation had significant influence on children's quality of life (P<0.05). The hierarchical multiple regression analysis revealed that doctor-patient communication and health care responsibilities led to a 14.3% increase in the explanation of the total variation in quality of life (P<0.001).Conclusions Quality of life is not satisfactory in children with chronic diseases. Two domains of transition readiness, namely the abilities to communicate with health providers and health care responsibilities, are major factors influencing quality of life in these children.
MA Jia-Li,SHENG Nan,DING Wen-Wen et al. Impact of transition readiness on quality of life in children with chronic diseases[J]. CJCP, 2018, 20(1): 60-66.
MA Jia-Li,SHENG Nan,DING Wen-Wen et al. Impact of transition readiness on quality of life in children with chronic diseases[J]. CJCP, 2018, 20(1): 60-66.
Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness:a systematic review[J]. J Pediatr Psychol, 2013, 38(8):809-828.
[2]
Beal SJ, Nye A, Marraccini A, et al. Evaluation of readiness to transfer to adult healthcare:What about the well adolescent?[J]. Healthc (Amst), 2014, 2(4):225-231.
Fu JF, Liang L, Gong CX, et al. Status and trends of diabetes in Chinese children:analysis of data from 14 medical centers[J].World J Pediatr, 2013, 9(2):127-134.
[5]
Bowen ME, Henske JA, Potter A. Health care transition in adolescents and young adults with diabetes[J]. Clin Diabetes, 2010, 28(3):99-106.
[6]
American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; et al. Supporting the health care transition from adolescence to adulthood in the medical home[J]. Pediatrics, 2011, 128(1):182-200.
Ferris M, Cohen S, Haberman C, et al. Self-management and transition readiness assessment:development, reliability, and factor structure of the STARx Questionnaire[J]. J Pediatr Nurs, 2015, 30(5):691-699.
Fenton N, Ferris M, Ko Z, et al. The relationship of health care transition readiness to disease-related characteristics, psychosocial factors, and health care outcomes:preliminary findings in adolescents with chronic kidney disease[J]. J Pediatr Rehabil Med, 2015, 8(1):13-22.
[14]
Lindsay S, Mcadam L, Mahendiran T. Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital[J]. Disabil Health J, 2017, 10(1):73-79.
[15]
Vajro P, Ferrante L, Lenta S, et al. Management of adults with paediatric-onset chronic liver disease:strategic issues for transition care[J]. Dig Liver Dis, 2014, 46(4):295-301.
[16]
Sawicki GS, Kelemen S, Weitzman ER. Ready, set, stop:mismatch between self-care beliefs, transition readiness skills, and transition planning among adolescents, young adults, and parents[J]. Clin Pediatr (Phila), 2014, 53(11):1062-1068.
[17]
Yang HL, Chen YC, Wang JK, et al. An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease[J]. J Cardiovasc Nurs, 2013, 28(6):541-549.
[18]
Fair C, Cuttance J, Sharma N, et al. International and interdisciplinary identification of health care transition outcomes[J]. JAMA Pediatr, 2016, 170(3):205-211.
[19]
Bingham CA, Scalzi L, Groh B, et al. An assessment of variables affecting transition readiness in pediatric rheumatology patients[J]. Pediatr Rheumatol Online J, 2015, 13(1):42.
[20]
Gabele A, Budde J, Spichiger E. Transition from childhood to adolescence -a qualitative study on experiences of adolescents with type 1 diabetes mellitus and their mothers[J]. Pflege, 2015, 28(2):69-78.
