Patient Surveys Can Help Doctors Do a Better Job of Treating Hemophilia, Study Suggests

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Hemophilia patient surveys

Information from patient surveys can help doctors do a better job of managing hemophilia and improving patients’ outcomes, an American study reports.

The research, which appeared in the journal Patient Preference and Adherence, was titled “Construct validity of patient-reported outcome instruments in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study.

One consequence of hemophilia is hemarthrosis, or bleeding into joints. It progressively damages joints, diminishing patients’ ability to function and reducing their quality of life.

This example underscores the notion that in order to improve comprehensive care of hemophilia patients, doctors need tools that help them assess and manage comorbidities, or diseases that accompany hemophilia.

Patient questionnaires and surveys are obvious tools, but many doctors don’t use them.

Researchers wanted to see how valuable patient-generated reports could be in managing pain, functional impairment, and health-related quality of life in hemophilia patients experiencing bleeding into joints.

The 381 men in the study filled out three surveys — two dealing with their general health and one with their hemophilia. The general-health surveys were the EQ-5D-5L, Brief Pain Inventory v2 Short Form, or BPI, and the Short Form Health Survey 36 Item v2, or SF-36v2. The disease-specific survey was the Hemophilia Activities List, or HAL.

Researchers used the BPI results to measure patients’ pain level on the day they completed the survey, and the SF-36v2 results to determine their pain over the previous week.

There was a high correlation among the three surveys in measures of pain, functional impairment, and anxiety or depression, the team said. Importantly, each survey provided different details on hemophilia’s effect on patients’ health.

All patient surveys “have high construct validity but provide different levels of detail in describing effects of hemophilia,” the researchers wrote. This means that choosing a survey “may depend on individuals’ symptoms, treatment planning goals,” and what researchers are trying to track, the team concluded.