Predictors of non‐adherence to prescribed prophylactic clotting‐factor treatment regimens among adolescent and young adults with a bleeding disorder

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

doi:10.1111/hae.12951

Cited by 29 publications

(59 citation statements)

References 29 publications

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“…VERITAS‐Pro thus allows to identify particular adherence issues and to distinguish between intentional and unintentional non‐adherence . Since its origin in the USA, VERITAS‐Pro has been used in various countries . However, as it assumes a compliant approach to adherence, it has not been found entirely applicable in health care settings with a more concordant treatment approach .…”

Section: Resultsmentioning

confidence: 99%

“…In a global survey, adherence dropped from 90% to 54% when 13‐18‐year‐olds started self‐infusing . In the USA, non‐adherence rose from 17% in 13‐17‐year‐olds to 47% in 18‐25‐year‐olds . It has been shown that up to 2/3 of YWH may experiment with stopping or reducing PTX …”

Section: Resultsmentioning

confidence: 99%

“…Lacking coverage of treatment costs is a main barrier to adherence. In Western European countries with universal health care, the impact of educational and occupational factors is lower than in the USA where YWH are under pressure to choose a career securing health insurance . Here, increased independence, financial responsibility and engagement in adult relationships have been shown to be challenging to 18‐30‐year‐old patients of whom many suffered from comorbidity, depression and anxiety .…”

Section: Resultsmentioning

confidence: 99%

“…In clinical practice, a systematic approach to transition is rarely used, however, and there is little evidence on best practices . The present qualitative review examined adherence to PTX in YWH . We aimed to gain comprehensive insight into main drivers and barriers to adherence by exploring them in the context of YWH's disease perceptions, characteristics, health‐related QoL and needs .…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Mortensen¹,

Strand²,

Almén³

2018

Haemophilia

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Recombinant prophylactic treatment (PTX) has greatly improved morbidity, mortality and health‐related quality of life (HRQoL) in patients with severe haemophilia. Yet, treatment adherence appears suboptimal in adolescents and young adults with haemophilia (YWH). Young patients experience major biopsychosocial changes challenging their adherence through the transition from parental to self‐care, from paediatric to adult care. In clinical practice, a systematic approach to transition is rarely used and there is little evidence on best practices. This qualitative review was based on a systematic literature search including quantitative as well as qualitative research reports to examine all relevant factors influencing adherence to PTX in YWH. We aimed to gain comprehensive insight into main drivers and barriers to adherence by exploring them in the context of YWH’s disease perceptions, characteristics, HRQoL and needs. The outcome is an overview of the latest published recommendations to support treatment adherence in YWH during the transition from family‐oriented care to self‐care and from paediatric to adult care. The literature suggests that adherence to PTX is best supported when individual patient needs and preferences are taken into consideration when planning treatment. Preserving normality is a main priority in young patients making it crucial to support patients from early childhood in considering PTX as enabling rather than hindering a normal social and physically active life. Education in self‐management should include psychosocial support of patients as well as caregivers. This requires systematic transition planning including milestone assessments and ongoing multidisciplinary support until full self‐management is secured.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Mortensen¹,

Strand²,

Almén³

2018

Haemophilia

View full text Add to dashboard Cite

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“…57 Myriad issues hinder adherence in adolescence and young adults including gaps in patient knowledge of the management of their bleeding disorder and product dosing/administration, self-infusion independence, coverage/payment for care, academic performance, employment opportunities, access to skilled adult care providers/centres, self and peer perception and parental ability to encourage independence. 57 Myriad issues hinder adherence in adolescence and young adults including gaps in patient knowledge of the management of their bleeding disorder and product dosing/administration, self-infusion independence, coverage/payment for care, academic performance, employment opportunities, access to skilled adult care providers/centres, self and peer perception and parental ability to encourage independence.…”

Section: Transitioning Teens To Adultsmentioning

confidence: 99%

Optimizing bleed prevention throughout the lifespan: Womb to Tomb

Gupta

Shapiro

2018

Haemophilia

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The focus of care providers, patients and families is the ability to tailor care for persons with haemophilia (PWH) across the lifespan. Care requires knowledge of the bleeding disorder and age-related complications, risk of therapeutic interventions, and evaluation of individual characteristics that contribute to outcomes. The ultimate goal is to live a normal life without the burden of bleeding, for PWH and carriers. A wide range of therapeutic options is required to achieve personalized care. Over the last decade, substantial therapeutic advantages have been achieved in the treatment of haemophilia that include the development of a robust array of factor concentrates, novel haemostatic agents, and increased knowledge and awareness of disease associated outcomes and risk factors. Significant strides on the road to accessible gene therapy have been realized. This increased range of therapeutic modalities provides options for development and implementation of care plans for each patient at each stage of life that are more flexible compared to prior care regimens. Paradigms for management of haemophilia are changing. As a community, we must work together to use these resources wisely, to learn from outcomes with new therapies and diagnostic tools, to assure all patients can achieve improved care and outcomes regardless of disease state or country of origin.

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Core Entrustable Professional Activities in Clinical Pharmacology for Entering Residency: Value of Interprofessional Health‐Care Teams in Medication Prescribing and Medication Error Prevention

Cohen

Donnenberg

Wiernik

et al. 2018

The Journal of Clinical Pharma

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In recent years, health care has been increasingly delivered by interprofessional teams in the inpatient, outpatient, and transition-of-care arenas. For many reasons, effective communication between patient-centered care teams and patients is critically important in order to optimize care, ensure patient safety, and prevent medical and medication misadventures. In rapid-paced, high-stress medical environments, it is especially important to carefully evaluate the causes of all misadventures in a manner that avoids assigning blame and identifies the root causes and, through team activity, leads to development of remedies that reduce the likelihood of future misadventures. Using a series of illustrative cases, this paper seeks to bring attention to these issues and provide insights regarding some tools developed to assist in improving patient safety and effective team communication.

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Predictors of non‐adherence to prescribed prophylactic clotting‐factor treatment regimens among adolescent and young adults with a bleeding disorder

Cited by 29 publications

References 29 publications

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Optimizing bleed prevention throughout the lifespan: Womb to Tomb

Core Entrustable Professional Activities in Clinical Pharmacology for Entering Residency: Value of Interprofessional Health‐Care Teams in Medication Prescribing and Medication Error Prevention

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