Systematic Approaches to Patient Educational Needs May Benefit Those With Bleeding Disorders

Bleeding disorders such as hemophilia and von Willebrand disease are rare, but as treatment methods advance, it is important for patients with blood disorders (PwBd) to continually learn and adjust their everyday self-management strategies. However, a study published in the journal Haemophilia found that there is a need for more systematic approaches to assess and address patient educational needs.

Nurses are often the first point of contact for both patients and caregivers, and they play a particularly important role in educating children diagnosed with bleeding disorders. This type of patient support facilitates better adherence to self-management measures and is considered a key part of nurses’ roles in hemophilia care. 

“Although patient education is considered an essential task for nurses in hemophilia care, there is evidence from practice that this task tends to be performed incidentally, often as a secondary task during routine visits,” study authors wrote.“It is often unclear what educational needs PwBd and their caregivers have and what educational interventions are needed to address them.” 

The scoping review aimed to provide insight into nurse-led patient education of PwBd, as well as provide a basis for more systematic approaches to patient education based on existing research.

A total of 579 records were retrieved from various databases and journal searches, 498 of which were screened by reading titles and abstracts. After applying exclusion criteria, 25 studies were included in the review. Few studies focused on the educational needs of PwBd and caregivers, and there were significant differences in the way PwBd and caregivers viewed educational needs versus how professionals viewed patients’ educational needs.

When studies focused on patient needs, topics including motivation, barriers to treatment adherence, and acceptance of treatment were emphasized rather than general education strategies. At certain life stages, such as pregnancy, specific educational needs were addressed in some programs. The authors emphasize a need for education in early childhood immediately after diagnosis, when patients and their caregivers have an opportunity to become experts at early stages of treatment.

The available studies showed that nurses did perform many educational tasks, mostly centered on improving patient self-management and addressing obstacles related to long-term self-treatment. There was substantial variety in the types of tasks performed by nurses, ranging from improving patients’ health literacy to counseling individuals on their specific problems related to the emotional effects of blood disorders.

The literature also emphasized the value of educational and psychological theories and models, in addition to experience, as nurses structure and lead patient education in hemophilia care. Some studies suggested developing standardized concepts and materials to facilitate more uniform treatment of PwBd.

“Based on the literature, nurse-led education should be consistent, participatory, long-lasting, and occasion-related to meet patients' needs (e.g., support from early childhood on and the idea of factor as a tool to live a ‘normal’ life improves adherence),” the authors wrote. User-centered education is crucial, especially as parents face the transition to caregivers and when children with blood disorders transition from being treated by caregivers to self-treating.

The review found little evidence of regular systematic evaluations of patients’ educational needs or of mandatory nurse-led programs to consistently support disease self-management. But nurse-led education overall was associated with an improvement in treatment-oriented self-management and self-efficacy in some cases.

While patient needs seem to be met at certain life points, the review highlights a lack of systematic approaches to assess patient and caregiver education or address potential knowledge gaps. Considering the scarcity of data and high variability in the available literature, further research is warranted on the conceptual foundations and impact models of educational interventions for PwBd.

“Patient education and self-management support should receive as much attention, evaluation, validation, and reflection, as other treatment methods or interventions in hemophilia,” the authors concluded.

Reference

Ballmann J, Ewers M. Nurse-led education of people with bleeding disorders and their caregivers: a scoping review. Haemophilia. Published online July 18, 2022. doi:10.1111/hae.14629