Comparing objective and self-reported measures of adherence in haemophilia

Vanessa Giroto Guedes, José Eduardo Corrente, Albert Farrugia, Sylvia Thomas, Patrick Alexander Wachholz, Edison Iglesias de Oliveira Vidal

Research output: Contribution to journalArticle

Abstract

Aim: To compare subjective and objective measures of adherence to prophylaxis in haemophilia. Methods: In this cross-sectional study, we compared participants’ self-perceived adherence and their estimate of the number of clotting factor concentrates (CFCs) that had been missed over the last period of CFC dispensation with an objective measure of adherence based on counts of CFC vials returned by participants. Results: We included 29 out of 31 eligible patients in the study. There was no significant correlation between self-perceived degree of adherence and the objective classification of adherence (Rho: 0.10, 95% CI: −028 to 0.46, P: 0.61) and between the classification of adherence based on the proportion of missed CFC doses assessed by participants’ self-report and objectively (Rho: 0.32, 95% CI: −0.01 to 0.59, P: 0.11). Conversely, we found evidence of moderate correlation between the proportion of missed CFC doses as assessed by participants’ self-report and objectively (Rho: 0.56, 95% CI: 0.24 to 0.77, P: 0.003). Participants’ self-perceived adherence was 3 times more likely to be rated as very good or good than it was for the objective assessment to be classified as adherent or suboptimally adherent. Conclusion: Our results showed significant discrepancies between subjective and objective measures of adherence, which likely reflect the influence of social desirability bias in self-reported measures and different concepts of adherence between patients/caregivers and haemophilia experts. Additionally, our results allow us to hypothesize that studies on adherence to prophylaxis in haemophilia relying exclusively on information from self-reports and questionnaires may substantially overestimate adherence levels.

Original languageEnglish
JournalHaemophilia
DOIs
Publication statusE-pub ahead of print - 19 Jul 2019

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Blood Coagulation Factors
Hemophilia A
Self Report
Social Desirability
Patient Compliance
Caregivers
Cross-Sectional Studies

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Guedes, V. G., Corrente, J. E., Farrugia, A., Thomas, S., Wachholz, P. A., & de Oliveira Vidal, E. I. (2019). Comparing objective and self-reported measures of adherence in haemophilia. Haemophilia. https://doi.org/10.1111/hae.13811
Guedes, Vanessa Giroto ; Corrente, José Eduardo ; Farrugia, Albert ; Thomas, Sylvia ; Wachholz, Patrick Alexander ; de Oliveira Vidal, Edison Iglesias. / Comparing objective and self-reported measures of adherence in haemophilia. In: Haemophilia. 2019.
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abstract = "Aim: To compare subjective and objective measures of adherence to prophylaxis in haemophilia. Methods: In this cross-sectional study, we compared participants’ self-perceived adherence and their estimate of the number of clotting factor concentrates (CFCs) that had been missed over the last period of CFC dispensation with an objective measure of adherence based on counts of CFC vials returned by participants. Results: We included 29 out of 31 eligible patients in the study. There was no significant correlation between self-perceived degree of adherence and the objective classification of adherence (Rho: 0.10, 95{\%} CI: −028 to 0.46, P: 0.61) and between the classification of adherence based on the proportion of missed CFC doses assessed by participants’ self-report and objectively (Rho: 0.32, 95{\%} CI: −0.01 to 0.59, P: 0.11). Conversely, we found evidence of moderate correlation between the proportion of missed CFC doses as assessed by participants’ self-report and objectively (Rho: 0.56, 95{\%} CI: 0.24 to 0.77, P: 0.003). Participants’ self-perceived adherence was 3 times more likely to be rated as very good or good than it was for the objective assessment to be classified as adherent or suboptimally adherent. Conclusion: Our results showed significant discrepancies between subjective and objective measures of adherence, which likely reflect the influence of social desirability bias in self-reported measures and different concepts of adherence between patients/caregivers and haemophilia experts. Additionally, our results allow us to hypothesize that studies on adherence to prophylaxis in haemophilia relying exclusively on information from self-reports and questionnaires may substantially overestimate adherence levels.",
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Comparing objective and self-reported measures of adherence in haemophilia. / Guedes, Vanessa Giroto; Corrente, José Eduardo; Farrugia, Albert; Thomas, Sylvia; Wachholz, Patrick Alexander; de Oliveira Vidal, Edison Iglesias.

In: Haemophilia, 19.07.2019.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Comparing objective and self-reported measures of adherence in haemophilia

AU - Guedes, Vanessa Giroto

AU - Corrente, José Eduardo

AU - Farrugia, Albert

AU - Thomas, Sylvia

AU - Wachholz, Patrick Alexander

AU - de Oliveira Vidal, Edison Iglesias

PY - 2019/7/19

Y1 - 2019/7/19

N2 - Aim: To compare subjective and objective measures of adherence to prophylaxis in haemophilia. Methods: In this cross-sectional study, we compared participants’ self-perceived adherence and their estimate of the number of clotting factor concentrates (CFCs) that had been missed over the last period of CFC dispensation with an objective measure of adherence based on counts of CFC vials returned by participants. Results: We included 29 out of 31 eligible patients in the study. There was no significant correlation between self-perceived degree of adherence and the objective classification of adherence (Rho: 0.10, 95% CI: −028 to 0.46, P: 0.61) and between the classification of adherence based on the proportion of missed CFC doses assessed by participants’ self-report and objectively (Rho: 0.32, 95% CI: −0.01 to 0.59, P: 0.11). Conversely, we found evidence of moderate correlation between the proportion of missed CFC doses as assessed by participants’ self-report and objectively (Rho: 0.56, 95% CI: 0.24 to 0.77, P: 0.003). Participants’ self-perceived adherence was 3 times more likely to be rated as very good or good than it was for the objective assessment to be classified as adherent or suboptimally adherent. Conclusion: Our results showed significant discrepancies between subjective and objective measures of adherence, which likely reflect the influence of social desirability bias in self-reported measures and different concepts of adherence between patients/caregivers and haemophilia experts. Additionally, our results allow us to hypothesize that studies on adherence to prophylaxis in haemophilia relying exclusively on information from self-reports and questionnaires may substantially overestimate adherence levels.

AB - Aim: To compare subjective and objective measures of adherence to prophylaxis in haemophilia. Methods: In this cross-sectional study, we compared participants’ self-perceived adherence and their estimate of the number of clotting factor concentrates (CFCs) that had been missed over the last period of CFC dispensation with an objective measure of adherence based on counts of CFC vials returned by participants. Results: We included 29 out of 31 eligible patients in the study. There was no significant correlation between self-perceived degree of adherence and the objective classification of adherence (Rho: 0.10, 95% CI: −028 to 0.46, P: 0.61) and between the classification of adherence based on the proportion of missed CFC doses assessed by participants’ self-report and objectively (Rho: 0.32, 95% CI: −0.01 to 0.59, P: 0.11). Conversely, we found evidence of moderate correlation between the proportion of missed CFC doses as assessed by participants’ self-report and objectively (Rho: 0.56, 95% CI: 0.24 to 0.77, P: 0.003). Participants’ self-perceived adherence was 3 times more likely to be rated as very good or good than it was for the objective assessment to be classified as adherent or suboptimally adherent. Conclusion: Our results showed significant discrepancies between subjective and objective measures of adherence, which likely reflect the influence of social desirability bias in self-reported measures and different concepts of adherence between patients/caregivers and haemophilia experts. Additionally, our results allow us to hypothesize that studies on adherence to prophylaxis in haemophilia relying exclusively on information from self-reports and questionnaires may substantially overestimate adherence levels.

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KW - developing countries

KW - haemophilia

KW - medication adherence

KW - patient compliance

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U2 - 10.1111/hae.13811

DO - 10.1111/hae.13811

M3 - Article

JO - Haemophilia

JF - Haemophilia

SN - 1351-8216

ER -