What a Bleed Rate Leaves Out of a Hemophilia CME Case

A hemophilia CME case that reports an annualized bleed rate has told the learner something about bleeding frequency. It has not, through that number alone, described the person's pain, daily activities, or experience of treatment.

For the clinical faculty member and instructional designer building the case, that is an opportunity to teach a useful distinction. Ask learners to identify what the reported outcome measures and what they would still need to understand about the patient's life.

A September 24 Medscape Education replay promotion prompts the question by emphasizing joint health and patient-reported outcomes alongside bleed rates. It is a provider's description of its education, not evidence that the activity changed care. Nor does adding those assessments guarantee a complete account of an individual's burden.

Patient-important outcomes have several dimensions

The 2018 PROBE questionnaire-development study offers an older, concrete example of patient involvement in deciding what to ask. People living with hemophilia and content experts helped develop and review the questionnaire. It covered general health, hemophilia-related problems, and health-related quality of life, alongside demographic information.

That paper evaluated development and feasibility, including whether patient organizations could administer the questionnaire. It did not establish that using the questionnaire improves care, and it was not a CME evaluation. Its contribution here is the attention to patient-important concepts when building the questions.

A 2021 international consensus outcomes set distinguishes severe bleeding episodes from chronic pain, ability to engage in daily activities, days lost from school or work, social functioning, and mental health. These are separate outcomes in the proposed set, rather than synonyms for a bleed rate.

The consensus work involved patient representatives and multidisciplinary clinicians, and drew on earlier work including PROBE. The two papers are connected, not independent replications. Women and children were underrepresented in the consensus panels, and applicability in resource-constrained settings remained to be assessed. The set helps identify dimensions to consider; it does not settle every patient's priorities or prescribe a treatment choice.

Let the case reveal what is missing

In a constructed teaching case, give learners a reported bleed rate and a separate patient statement about difficulty with daily activities. Ask them what each piece of information establishes. Then ask which relevant information is absent.

The expected reasoning is specific: the bleed rate describes bleeding frequency; the statement describes a reported limitation. Neither, by itself, explains the cause of that limitation or shows how it should be managed. Learners should recognize the unresolved question rather than fill it with an assumption.

Clinical faculty should decide which concepts and measures fit the case's population and purpose, and verify the clinical interpretation. The instructional designer can make that reasoning visible in the activity: distinguish the outcome, identify missing information, and explain why it matters. If an instrument is included, faculty should check its intended use and supporting evidence; a convenient questionnaire is not automatically suitable for every patient group or setting.

For this proposed exercise, the educational assessment could ask learners to explain the distinction in a new case. That tests their reasoning about the information presented. It does not measure whether patients subsequently experienced less pain, fewer bleeds, or improved functioning.

Our earlier discussion of defining defensible patient-impact claims matters at that boundary. A learner who identifies a missing patient outcome has demonstrated something in the activity. Translating that result into a claim about patients requires separate evidence.

Before finalizing the case, ask what its success measure leaves unspoken. Make that omission part of the learning task, while keeping the learner's demonstrated reasoning and the patient's lived outcome distinct.