Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy

被引:10
作者
Nakajima, Shohei [1 ,2 ]
Sato, Iori [1 ,2 ]
Soejima, Takafumi [1 ,2 ]
Koh, Katsuyoshi [3 ]
Kato, Motohiro [4 ]
Okamoto, Yasuhiro [5 ]
Imamura, Toshihiko [6 ]
Maeda, Miho [7 ]
Ishida, Yasushi [8 ]
Manabe, Atsushi [9 ]
Kamibeppu, Kiyoko [1 ,2 ]
机构
[1] Univ Tokyo, Dept Family Nursing, Div Hlth Sci & Nursing, Grad Sch Med,Bunkyo Ku, 7-3-1 Hongo, Tokyo 1130033, Japan
[2] Univ Tokyo, Dept Hlth Qual & Outcome Res, Global Nursing Res Ctr, Grad Sch Med,Bunkyo Ku, 7-3-1 Hongo, Tokyo 1130033, Japan
[3] Saitama Childrens Med Ctr, Dept Hematol Oncol, Chuo Ku, 1-2 Shin Toshin, Saitama 3308777, Japan
[4] Natl Ctr Child Hlth & Dev, Childrens Canc Ctr, Setagaya Ku, 2-10-1 Okura, Tokyo 1578535, Japan
[5] Kagoshima Univ, Grad Sch Med & Dent Sci, Dept Pediat, 8-35-1 Sakuragaoka, Kagoshima 8908520, Japan
[6] Kyoto Prefectural Univ Med, Dept Pediat, Grad Sch Med Sci, Kamigyo Ku, 465 Kajii Cho, Kyoto 6028566, Japan
[7] Nippon Med Sch, Dept Pediat, Bunkyo Ku, 1-1-5 Sendagi, Tokyo 1138603, Japan
[8] Ehime Prefectural Cent Hosp, Pediat Med Ctr, 83 Kasuga Machi, Matsuyama, Ehime 7900024, Japan
[9] Hokkaido Univ, Dept Pediat, Grad Sch Med, Kita Ku, Kita 15,Nishi 7, Sapporo, Hokkaido 0608638, Japan
关键词
Agreement; Dyadic analysis; Neoplasms; Patient reported outcome measures; Pediatric hospitals; Quality of life; GENERIC CORE SCALES; JAPANESE CHILDREN; PARENTS; ADOLESCENTS; PEDSQL(TM); AGREEMENT; SURVIVAL; OUTCOMES; VERSION; CANCER;
D O I
10.1186/s12887-020-02287-3
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
BackgroundThis study aims at determining the health-related quality of life (HRQOL) of children with acute lymphoblastic leukemia (ALL) after the induction therapy, assessing the agreement between child self-reports and family proxy-reports HRQOL, and determining the factors related to this agreement, especially child age, family attendance, and children's social relationships beyond the family.MethodsWe analyzed questionnaire data (2012-2017) from the Japanese Pediatric Leukemia/Lymphoma Study Group's clinical study (ALL-B12). Participants were children with B-cell precursor ALL aged 5-18 and their family members, who mostly took care of the child during hospitalization. Participants answered the Pediatric Quality of Life Inventory (TM) (PedsQL (TM)) Generic Core Scales (PedsQL-G), and Cancer Module (PedsQL-C) to measure pediatric HRQOL. We calculated the differences between child self-reported and family proxy-reported subscale scores along with intraclass correlation coefficients (ICC). We conducted multiple regression analyses according to all participant pairs and age groups (young children, school age, and adolescents), with ICCs for all PedsQL-G subscales (ICC-G) and all PedsQL-C subscales (ICC-C) as the outcome variables.ResultsFive hundred twenty-two pairs of children and their families were analyzed. We observed a moderate level of agreement on most PedsQL subscales between child self-reports and family proxy-reports; however, worry had the weakest agreement for all PedsQL subscales (ICC=.32, 95% confidence interval=.24-.40). The agreement of ICC-C was positively related to family attendance in the hospitalization, only for the young children group (B=.185, p=.003).ConclusionsWe observed some differences between child self-reports and family proxy-reports of HRQOL of children with ALL. Both child self-reports and family proxy-reports captured HRQOL in the induction therapy. We suggest that attending to young children's hospitalization affects the level of agreement between reports on their HRQOL.
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页数:11
相关论文
共 40 条
[1]  
[Anonymous], 1996, J Clin Oncol, V14, P671
[2]  
[Anonymous], 2019, R: The R Project for Statistical Computing
[3]  
Eiser C, 2001, HLTH TECHNOL ASSESS, V5, P69
[4]   Health-related quality of life and symptom reporting: similarities and differences between children and their parents [J].
Eiser, Christine ;
Varni, James W. .
EUROPEAN JOURNAL OF PEDIATRICS, 2013, 172 (10) :1299-1304
[5]   Patient-reported outcomes in end-of-life research in pediatric oncology [J].
Hinds, Pamela S. ;
Brandon, Jennifer ;
Allen, Caitlin ;
Hijiya, Nobuko ;
Newsome, Rachel ;
Kane, Javier R. .
JOURNAL OF PEDIATRIC PSYCHOLOGY, 2007, 32 (09) :1079-1088
[6]   Incidence and survival rates of hematological malignancies in Japanese children and adolescents (2006-2010): based on registry data from the Japanese Society of Pediatric Hematology [J].
Horibe, Keizo ;
Saito, Akiko M. ;
Takimoto, Tetsuya ;
Tsuchida, Masahiro ;
Manabe, Atsushi ;
Shima, Midori ;
Ohara, Akira ;
Mizutani, Shuki .
INTERNATIONAL JOURNAL OF HEMATOLOGY, 2013, 98 (01) :74-88
[7]   Acute lymphoblastic leukaemia [J].
Inaba, Hiroto ;
Greaves, Mel ;
Mullighan, Charles G. .
LANCET, 2013, 381 (9881) :1943-1955
[8]  
Ishida Y, 2003, J JAPAN PEDIAT SOC, V17, P377
[9]  
Ishida Y, 2011, J JAPAN PEDIAT SOC, V115, P918
[10]   Measuring quality of life in the parents of children with asthma [J].
Juniper, EF ;
Guyatt, GH ;
Feeny, DH ;
Ferrie, PJ ;
Griffith, LE ;
Townsend, M .
QUALITY OF LIFE RESEARCH, 1996, 5 (01) :27-34