Informant Discrepancy in Perceptions of Sickle Cell Disease Severity

Connelly, Mark; Wagner, Janelle L.; Brown, Ronald T.; Rittle, Carrie; Cloues, Barbara; Taylor, Lloyd A.

doi:10.1093/jpepsy/jsi068

Cited by 9 publications

(9 citation statements)

References 24 publications

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“…Possible scores range from 0 to 100, with higher scores indicating greater disease severity. Previous research has demonstrated that provider ratings of disease severity via VAS are significantly correlated with objective ratings (i.e., hemoglobin levels and ER visits) in pediatric SCD (Connelly et al, 2005) and was significantly correlated with child report of pain in this study [r(100) ¼ .23, p < 0.05].…”

Section: Disease Severitysupporting

confidence: 56%

Evaluating the Protective Role of Racial Identity in Children with Sickle Cell Disease

Lim

Welkom

Cohen

et al. 2012

Journal of Pediatric Psychology

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Section: Disease Severitysupporting

confidence: 56%

Evaluating the Protective Role of Racial Identity in Children with Sickle Cell Disease

Lim

Welkom

Cohen

et al. 2012

Journal of Pediatric Psychology

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“…Perceptions related to disease severity have also been found to differ between patients and their caregivers, including physicians. Connelly et al showed this discrepancy in their study, in which patients with SCD reported fewer SCD-related symptoms and milder disease severity compared to that reported by their parents and physicians [43]. However, in our study, we did not examine SCD perceptions among different informants.…”

Section: Discussionmentioning

confidence: 55%

Adherence to hydroxyurea, health-related quality of life domains, and patients’ perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults

Badawy

Thompson

Lai

et al. 2017

Health Qual Life Outcomes

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BackgroundSickle cell disease (SCD) patients have impaired domains of health-related quality of life (HRQOL). Hydroxyurea is safe and efficacious in SCD; however, adherence is suboptimal, and patients’ perceptions are poorly understood amongst adolescents and young adults (AYA). Study objectives were to: (1) examine patients’ perceptions of SCD and hydroxyurea; and (2) explore the relationship of their perceptions to clinical characteristics, HRQOL domains and hydroxyurea adherence.MethodsThirty-four SCD patients on hydroxyurea (≥6 months) participated in a single-institution study. Study measures included Brief-Illness Perceptions Questionnaire, ©Modified Morisky Adherence Scale 8-items, and Patient Reported Outcomes Measurement Information System (PROMIS®). We assessed the relationship of patients’ perceptions to hydroxyurea adherence using Wilcoxon rank-sum test, the number of hospitalizations using Kruskal-Wallis test, and the number of ED visits, adherence level, HRQOL domain scores using Spearman’s rho correlations. We conducted a sub-analysis in HbSS patients to evaluate the relationship of patients’ perceptions to laboratory markers of hydroxyurea adherence.ResultsParticipants were 59% male and 91% Black, and had a median age of 13.5 (range 12–18) years. Participants with ≥4 hospitalizations over 1-year prior (using electronic medical chart review) reported more negative perceptions of SCD-related symptoms and emotional response, and perceived hydroxyurea as less beneficial; all p-values ≤0.01. Most participants (74%) reported low hydroxyurea adherence. Participants with higher hydroxyurea adherence perceived more hydroxyurea benefits (r s = 0.44, p < 0.01) and had better emotional response to SCD (r s = −0.44, p = 0.01). In a sub-analysis of HbSS patients, perceived benefits of hydroxyurea positively correlated with HbF (r s = 0.37, p = 0.05) and MCV values (r s = 0.35, p = 0.05). Participants with more negative perceptions of SCD-related consequences, concerns, and emotional response, and fewer perceived hydroxyurea benefits reported worse fatigue (r s = 0.68; r s = 0.44; r s = 0.74; r s = −0.60), pain (r s = 0.56; r s = 0.54; r s = 0.63; r s = −0.39), anxiety (r s = 0.55; r s = 0.58; r s = 0.56; r s = −0.47), and depression (r s = 0.64; r s = 0.49; r s = 0.70; r s = −0.62), respectively, all p-values <0.05.ConclusionsDynamics influencing hydroxyurea adherence are multifactorial, and understanding patients’ perceptions is critical to overcoming adherence barriers. Patients’ favorable perceptions correlated with greater adherence and better HRQOL domain scores. Prospective evaluation of patients’ perceptions of SCD and hydroxyurea in relation adherence, HRQOL domains and clinical outcomes is warranted.

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“…Furthermore, in multivariate analyses, married or cohabiting parents reported a higher parent‐proxy discrepancy QoL compared with those who were single, and health care professional‐proxy‐reported discrepancy QoL was higher for children who had not missed any days of school, supporting previous research (Dampier et al ., ). In contrast, previous research has found that disease severity is an important correlate of parent‐proxy‐reported health‐related QoL (Palermo et al ., ; Panepinto et al ., , ), and it might be expected that this would be even more likely to explain health care professional‐proxy reports (Connelly et al ., ). Once again, the reason this was not more important in the present study is likely to be due to the focus on generic QoL.…”

Section: Discussionmentioning

confidence: 97%

“…Days missed from school were also found to be related to child and parent‐proxy reports (Dampier et al ., ). There has been no research into the variables that may be related to health care professional‐proxy reports in the paediatric SCD population, although the degree of disease severity may be a contributing factor (Connelly et al ., ).…”

Section: Introductionmentioning

confidence: 99%

“…In research on children with psychiatric disorders, a moderate correlation between reports from children and parents was found as well as a small correlation between reports from children and their clinician (Bastiaansen, Koot, Ferdinand, & Verhulst, 2004). Health care professional reports have not been examined in the paediatric SCD population, but evidence suggests that children with SCD tend to perceive less symptom severity compared with physicians, and objective measures of disease severity may in part account for this discrepancy (Connelly et al, 2005).…”

mentioning

confidence: 99%

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Assessing the quality of life of children with sickle cell anaemia using self‐, parent‐proxy, and health care professional‐proxy reports

Constantinou

Payne

Inusa

2014

British J Health Psychol

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Objectives. The Quality of Life (QoL) of children with Sickle Cell Anaemia (SCA) in the UK has not been examined, and a discrepancy measure based on Gap theory has rarely been used. This study investigated whether 1) child self-reports of QoL using a discrepancy measure (the Generic Children's QoL Measure; GCQ) are lower than those from healthy children, 2) proxy reports from parents and healthcare professionals are lower than child self-reports, and 3) demographic and disease severity indicators are related to QoL. Design andMethods. An inter-dependent groups cross-sectional design was implemented.Seventy-four children with SCA, their parent and members of their healthcare team completed the GCQ. Demographic and disease severity indicators were recorded. GCQ data from healthy children were obtained from the UK Data Archive.Results. Contrary to past research, when examining generic discrepancy QoL, children with SCA did not report lower QoL than healthy children, and parent-and healthcare professional proxy reports were not lower than child self-reports. Few of the demographic and disease severity indicators were related to QoL. Conclusions.Proxy reports may be used to gain a more complete picture of QoL but should not be a substitute for self-reports. The explanation for the relatively high levels of QoL reported is not clear, but children with SCA may have realistic expectations about their ideal self, place greater emphasis on aspects other than health in shaping their QoL, and define achievements within the limits of their illness. Future research should focus on psychological factors in explaining QoL.

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Informant Discrepancy in Perceptions of Sickle Cell Disease Severity

Abstract: Implications for the association between chronic disease and adjustment are discussed.

Cited by 9 publications

References 24 publications

Evaluating the Protective Role of Racial Identity in Children with Sickle Cell Disease

Evaluating the Protective Role of Racial Identity in Children with Sickle Cell Disease

Adherence to hydroxyurea, health-related quality of life domains, and patients’ perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults

Assessing the quality of life of children with sickle cell anaemia using self‐, parent‐proxy, and health care professional‐proxy reports

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