PMID- 32124643
OWN - NLM
STAT- MEDLINE
DCOM- 20211019
LR  - 20211204
IS  - 1938-8993 (Electronic)
IS  - 1540-4153 (Print)
IS  - 1540-4153 (Linking)
VI  - 18
IP  - 4
DP  - 2020 Dec
TI  - Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as 
      Reported by Parents and Youth.
PG  - 224-231
LID - 10.1177/1540415320908525 [doi]
AB  - INTRODUCTION: Approximately 10% to 15% of people affected by sickle cell disease 
      (SCD) in the United States are Latino, many of whom are primary Spanish speakers. 
      A key tool for self-reported outcome measures, the Pediatric QOL Inventory 
      (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic 
      validity of a Spanish translation and compare perception of disease-specific and 
      generic quality of life (QOL) in a sample of Latino and non-Latino children with 
      SCD and their parents. METHOD: Following forward and backward translation, 
      Spanish-speaking child-parent dyads linguistically validated the translated 
      instruments. Disease-specific and generic QOL perception of 28 child-parent dyads 
      who participated in a clinical feasibility trial, HABIT (Hydroxyurea Adherence 
      for Personal Best in Sickle Cell Disease), were compared by ethnicity. Data were 
      analyzed by descriptive statistics, Mann-Whitney U test, absolute score 
      differences, and minimal clinically important differences (MCID). RESULTS: The 
      translated questionnaire required no further language changes. QOL scores were 
      higher for Latino children and parents compared with non-Latinos, with score 
      differences exceeding MCIDs for total scores and the majority of subscale scores. 
      CONCLUSION: Spanish language PedsQL SCD instruments allow measurement of QOL in 
      Spanish-speaking Latino children with SCD and their parents. Score differences 
      for Latinos mostly exceeded MCIDs, suggesting that these differences are 
      clinically meaningful. Confirmation of these findings is warranted.
FAU - Osborne, Jennel C
AU  - Osborne JC
AUID- ORCID: 0000-0001-8345-9439
AD  - 2045Long Island University, Brooklyn, NY, USA.
FAU - Green, Nancy S
AU  - Green NS
AD  - 5798Columbia University Irving Medical Center, New York, NY, USA.
FAU - Smaldone, Arlene M
AU  - Smaldone AM
AD  - 5798Columbia University, New York, NY, USA.
LA  - eng
GR  - P30 NR016587/NR/NINR NIH HHS/United States
GR  - R01 NR017206/NR/NINR NIH HHS/United States
GR  - R21 NR013745/NR/NINR NIH HHS/United States
GR  - UL1 TR000040/TR/NCATS NIH HHS/United States
PT  - Journal Article
PT  - Research Support, N.I.H., Extramural
DEP - 20200303
PL  - United States
TA  - Hisp Health Care Int
JT  - Hispanic health care international : the official journal of the National 
      Association of Hispanic Nurses
JID - 101150304
SB  - IM
MH  - Adolescent
MH  - Anemia, Sickle Cell/*ethnology/*psychology
MH  - Child
MH  - Child, Preschool
MH  - Cross-Sectional Studies
MH  - Female
MH  - Hispanic or Latino/*psychology
MH  - Humans
MH  - Male
MH  - Parents/*psychology
MH  - *Quality of Life
MH  - Reproducibility of Results
MH  - Surveys and Questionnaires/standards
MH  - Translating
MH  - United States/epidemiology
PMC - PMC7483779
MID - NIHMS1595894
OTO - NOTNLM
OT  - Latinos
OT  - disease-specific quality of life
OT  - linguistic validation
OT  - quality of life
OT  - sickle cell disease
EDAT- 2020/03/04 06:00
MHDA- 2021/10/21 06:00
PMCR- 2020/12/01
CRDT- 2020/03/04 06:00
PHST- 2020/03/04 06:00 [pubmed]
PHST- 2021/10/21 06:00 [medline]
PHST- 2020/03/04 06:00 [entrez]
PHST- 2020/12/01 00:00 [pmc-release]
AID - 10.1177/1540415320908525 [doi]
PST - ppublish
SO  - Hisp Health Care Int. 2020 Dec;18(4):224-231. doi: 10.1177/1540415320908525. Epub 
      2020 Mar 3.