Pain and QOL in Pediatric Sickle Cell Disease: Buffering by Resilience Processes

Abstract

Objective Sickle cell disease (SCD) is a group of inherited blood disorders. The central feature of this chronic condition is pain. Several identified risk factors exacerbate the impact of pain on quality of life (QOL) in SCD; however, there are relatively fewer investigations of strengths-based resilience variables that might buffer the influence of pain on living with SCD. The purpose of this study was to examine strength-based resilience processes in youth with SCD and their parents. Grounded in an ecological resilience-risk model, we evaluated whether adolescent and parent protective factors (pain acceptance, mindfulness, and psychological flexibility) moderated the relation between adolescent-reported pain burden and QOL. Methods Ninety-three 12- to 18-year-old adolescents with SCD and their parents participated. Adolescents completed assessments of pain characteristics, pain acceptance, mindfulness, and QOL. Parents completed instruments measuring demographic and disease variables and parent psychological flexibility. Results Pain variables were associated with protective factors in predicted directions. Adolescent acceptance and mindfulness were positively correlated with QOL. Parent psychological flexibility and adolescent QOL were not related. After controlling for demographic, pain, and disease variables, moderation analyses indicated that adolescent pain acceptance buffered the relation between SCD pain burden and QOL. Moderation analyses were not significant for adolescent mindfulness or parent psychological flexibility. Conclusions Results suggest that strengths-based factors may play an important role for adolescents’ QOL within the context of SCD pain. Interventions that enhance teenagers’ ability to accept pain might be particularly useful to improve QOL in adolescents living with SCD pain.

Defining and Measuring Resilience in Children with a Chronic Disease: a Scoping Review

“…(Adibsereshki et al, 2021 ; Arruda et al, 2021 ; Bahryni et al, 2016 ; Beeckman et al, 2019 ; Biernacka et al, 2021 ; Borinsky et al, 2019 ; Carlsen et al, 2017 ; Chung et al, 2021 ; Cui et al, 2022 ; Fee & Hinton, 2011 ; Gmuca et al, 2021 ; Hood et al, 2018 ; Huang et al, 2018 ; Im & Kim, 2012 ; Jaser & White, 2011 ; Kaewkong et al, 2020 ; Kim & Im, 2014 ; Kim & Yoo, 2010 ; Kully-Martens et al, 2021 ; Lau et al, 2020 ; Lee et al, 2019 ; Lee et al, 2014 , 2017 , 2020 ; Li et al, 2022 ; Lukacs et al, 2018 ; McGavock et al, 2018 ;Moreira et al, 2015 ; Nabors et al, 2021 ; Parviniannasab et al, 2022 ; Rainone et al, 2017 ; Rassart et al, 2016 ; Robb et al, 2014 ; Rosenberg et al, 2014 , 2018 ; Ruff et al, 2016 ; Shapiro et al, 2021 ; Simon et al, 2009 ; Tomlinson et al, 2021 ; Verma & Rohan, 2020 ; Whiteley et al, 2019 ; Wright et al, 2021 ; Wu et al, 2013 ; Wu et al, 2018 ; Yi-Frazier et al, 2015 ; Zimmerman et al, 2021 )…”

“…(Bahryni et al, 2016 ; Biernacka et al, 2021 ; Carlsen et al, 2017 ; Chung et al, 2021 ; Hood et al, 2018 ; Huang et al, 2018 ; Kim & Yoo, 2010 ; Lee et al, 2019 ; Parviniannasab et al, 2022 ; Rosenberg et al, 2014 ; Simon et al, 2009 ; Tomlinson et al, 2021 ; Wright et al, 2021 ; Wu et al, 2018 ; Yi-Frazier et al, 2015 )…”

A dyadic analysis of parent and child pain catastrophizing and health-related quality of life in pediatric sickle cell disease

“…Additionally, strength-based factors, specifically the modifiable one of pain acceptance, may play an important role for youth HRQOL in the context of SCD pain. 52…”

“…Additionally, strength-based factors, specifically the modifiable one of pain acceptance, may play an important role for youth HRQOL in the context of SCD pain. 52 The findings should be couched within study limitations. As with all cross-sectional data, directionality cannot be determined, although we posit there are likely multiple influences in determining parent and child pain catastrophizing, as well as HRQOL.…”

The relationship between cumulative risk and health‐related quality of life in youth with sickle cell disease: Moderating effects of secondary control engagement coping

“…12 Pain acceptance, an SCE coping strategy, was also associated with higher HRQOL and lower pain burden in youth with SCD. 14 For youth with chronic pain who face similar daily stressors, greater use of SCE coping has been associated with lower anxiety, depression, and reports of somatic complaints. 15,16 Inconsistent and sometimes unfavorable outcomes have been reported for PCE and disengagement coping strategies; thus, the current study focused specifically on SCE coping strategies.…”