Racial Differences in Chronic Pain and Quality of Life among Adolescents and Young Adults with Moderate or Severe Hemophilia

Lambing, Angela; Witkop, Michelle; Anderson, Terry L.; Munn, James; Tortella, Bartholomew J.

doi:10.1007/s40615-015-0107-x

Cited by 15 publications

(12 citation statements)

References 57 publications

(60 reference statements)

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Section: Discussionsupporting

confidence: 92%

“…Findings of our study are consistent with McLaughlin et al (2016) who reported that racial differences in chronic pain level accounted for statistically different QOL scores between Whites and non-Whites (comparison between Latino/Hispanic and non-Latino/Black was not reported). McLaughlin et al (2016) examined the relationship between race, adherence, chronic pain, and QOL in a sample of 80 adolescents and young adults with hemophilia where the sample was 61% White (12% Hispanic and 88% non-Hispanic) and 19% non-White (14% Hispanic and 86% non-Hispanic). McLaughlin et al (2016) reported that scores for non-Whites were significantly lower than those for Whites on Physical Composite Summary Score ( p = .02), and on Bodily Pain subscale ( p = .02), Physical Function subscale ( p = .03), and Role Limitations subscale ( p = .01).…”

Section: Discussionsupporting

confidence: 92%

“…McLaughlin et al (2016) examined the relationship between race, adherence, chronic pain, and QOL in a sample of 80 adolescents and young adults with hemophilia where the sample was 61% White (12% Hispanic and 88% non-Hispanic) and 19% non-White (14% Hispanic and 86% non-Hispanic). McLaughlin et al (2016) reported that scores for non-Whites were significantly lower than those for Whites on Physical Composite Summary Score ( p = .02), and on Bodily Pain subscale ( p = .02), Physical Function subscale ( p = .03), and Role Limitations subscale ( p = .01). Non-White participants reported significantly higher levels of chronic pain, compared with Whites.…”

Section: Discussionmentioning

confidence: 99%

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Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth

Osborne

Green

Smaldone

2020

Hisp Health Care Int

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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.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 92%

Section: Discussionmentioning

confidence: 99%

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Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth

Osborne

Green

Smaldone

2020

Hisp Health Care Int

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“…As the name suggests, the IMPACT QoL study had the primary goal of assessing the relationship between validated measures of pain, clotting-factor adherence, and HRQoL among AYA PWH or VWD. Data describing the relationship between adherence to a prescribed clotting factor treatment regimen and chronic pain, along with racial differences in chronic pain and QoL from this study, were previously reported [24, 25]. Data were collected via a one-time, cross-sectional, online survey from a convenience sample of AYA PWH or VWD.…”

Section: Methodsmentioning

confidence: 99%

Predictors of quality of life among adolescents and young adults with a bleeding disorder

Munn¹,

Anderson²,

Lambing³

et al. 2017

Health Qual Life Outcomes

Self Cite

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BackgroundHealth-related quality of life (HRQoL) in adolescents and young adults with bleeding disorders is under-researched. We aimed to describe factors related to HRQoL in adolescents and young adults with hemophilia A or B or von Willebrand disease.MethodsA convenience sample of volunteers aged 13 to 25 years with hemophilia or von Willebrand disease completed a cross-sectional survey that assessed Physical (PCS) and Mental (MCS) Component Summary scores on the SF-36 questionnaire. Quantile regression models were used to assess factors associated with HRQoL.ResultsOf 108 respondents, 79, 7, and 14% had hemophilia A, hemophilia B, and von Willebrand disease, respectively. Most had severe disease (71%), had never developed an inhibitor (65%), and were treated prophylactically (68%). Half of patients were aged 13 to 17 years and most were white (80%) and non-Hispanic (89%). Chronic pain was reported as moderate to severe by 31% of respondents. Median PCS and MCS were 81.3 and 75.5, respectively. Quantile regression showed that the median PCS for women (61% with von Willebrand disease) was 13.1 (95% CI: 2.4, 23.8; p = 0.02) points lower than men. Ever developing an inhibitor (vs never) was associated with a 13.1-point (95% CI: 4.7, 21.5; p < 0.01) PCS reduction. MCS was 10.0 points (95% CI: 0.7, 19.3; p = 0.04) higher for prophylactic infusers versus those using on-demand treatment. Compared with patients with no to mild chronic pain, those with moderate to severe chronic pain had 25.5-point (95% CI: 17.2, 33.8; p < 0.001) and 10.0-point (95% CI: 0.8, 19.2; p = 0.03) reductions in median PCS and MCS, respectively.ConclusionsEfforts should be made to prevent and manage chronic pain, which was strongly related to physical and mental HRQoL, in adolescents and young adults with hemophilia and von Willebrand disease. Previous research suggests that better clotting factor adherence may be associated with less chronic pain.

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“…Out of 16 studies, 12 reports mentioned identifying the factors or correlates of adherence as their primary or secondary objectives. More than two thirds of studies (11/16) adopted a cross-sectional data collection including those with retrospective data from chart review, 29 , 30 , 32 , 33 , 35 , 36 , 39 , 40 , 42 whereas two were pre-post evaluations of interventions. 31 , 41 Two had prospective follow-up designs, 34 , 37 and one was a qualitative inquiry on the experience of treatment in adults.…”

Section: Results: Prophylaxis Treatment In Hemophiliamentioning

confidence: 99%

Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: What should be the targets for future research?

Sultan¹,

Hourani²,

Rondeau³

et al. 2018

PPA

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Adherence to treatment regimens in growth hormone dysregulations and hemophilia is related to better outcome and fewer complications over time. Subcutaneous growth hormone injection and intravenous blood factor replacement therapies are parenteral treatments with a comparable regimen calling for similar behavioral processes. Although we have lists of possible factors influencing adherence in these conditions, the evidence is scattered. The objective of this study was to systematically review empirical studies linking factors of adherence with measures of adherence. To categorize the factors, we used a taxonomy from the diabetes literature. We used four major electronic databases to identify articles. We synthesized 27 articles dated 2011–2017 corresponding to inclusion criteria. Results showed a consistent proportion of 20%–25% participants with adherent issues. Strong arguments pointed to the transition to self-care in pediatrics as a vulnerability period (7/27 reports). We found the domains of individual factors (<30% reports), relational factors (<13%), health care (<30%), to be understudied in comparison with that of demographic or clinical context (>74%), and practical issues (>37%). The results suggest that future research should focus on modifiable factors of adherence, with appropriate measurement and intervention strategies. One central methodological limitation of reviewed reports was the lack of longitudinal designs, and the quasi absence of behavioral trial targeting modifiable factors of adherence. A new research agenda should be set in these rare diseases as higher adherence should translate into improved outcome and better quality of life for patients and their families.

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Racial Differences in Chronic Pain and Quality of Life among Adolescents and Young Adults with Moderate or Severe Hemophilia

Cited by 15 publications

References 57 publications

Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth

Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth

Predictors of quality of life among adolescents and young adults with a bleeding disorder

Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: What should be the targets for future research?

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