A survey of patients with haemophilia to understand how they track product used at home

Abstract

Record keeping among individuals who manage haemophilia at home is an essential tool of communication between patient and Haemophilia Treatment Center (HTC). Complete records help HTCs monitor patients, their use of factor and ensure treatment is optimal. HTCs provide patients with a number of methods to track infusion practices. The study objectives were to: [1] determine the current methods of record keeping; [2] identify previous methods of record keeping; [3] understand the strengths and weaknesses associated with each method; and [4] gather suggestions for improvement. Survey methods were used to address the research objectives. Of the 83 patients in the Hamilton-Niagara region who received the survey distributed through the local HTC, 51 returned surveys were included into the analysis. Descriptive statistics were used. Results indicate individuals with haemophilia record infusion practices using: paper diaries, excel spreadsheets, hand-held PDAs and/or the online EZ-Log Web Client. The most popular method of record keeping was EZ-Log (45.1%) followed by paper diaries (35.2%). Advantages to using paper methods include the visual tracking of information and retaining hardcopies. The disadvantage was the inconvenience of physically submitting the records monthly. Advantages to using the online EZ-Log Web Client included ease of use and improved accuracy. The primary disadvantage was technical errors that were difficult to troubleshoot. Record keeping practices among individuals with haemophilia seem to vary according to personal preference and convenience. Respondents suggested that saving infusion history, incorporating barcode scanners or a copy and paste function could improve electronic methods.

Telehealth Interventions for Improving Self-Management in Patients With Hemophilia: Scoping Review of Clinical Studies

“…Of the 16 articles, three (19%) described randomized controlled trials (RCTs) [14,25,26], two (12%) described qualitative studies [15,27], and the remaining (n=11, 69%) described observational studies [12,13,16-24]. Eight studies (50%) were conducted in North America [14,15,19,20,22,23,26,27]; five (31%), in Europe [16-18,24,25]; two (12%), in the United Kingdom [12,13]; and one (6%), in Australia [21].…”

Impact of Telemedicine Tools on Record Keeping and Compliance in Haemophilia Care

“…In terms of real-time data transfer, clotting factor tracking as well as therapy follow-up, the ontime data transmission is of utmost importance. 13 The highest increase in record delivery (34%) was reported in the age group of 21 to 40 years, which might be related to the convenience of the ubiquitous access to the e-diary via application/webpage, that may be considered as important in the context of presumably active lifestyle of the respective age group. Moreover, significant improvements attributed to the use of e-diary were observed in the completeness of data reporting among our cohort.…”

The haemtrack home therapy reporting system: Design, implementation, strengths and weaknesses: A report from UK Haemophilia Centre Doctors Organisation

“…Small scale surveys suggest that electronic diaries are acceptable to most patients who have some computer literacy, though a proportion of patients still preferred a paper system . An electronic system makes data handling and verification much easier and less labour intensive for the haemophilia centre .…”

“…To date, the use of home therapy diaries has largely been limited to individual patient management at a haemophilia centre level. However, they have also become a standard tool for monitoring the use and efficacy of new replacement products in phase III clinical trials and may be used at a national and international level as a component of pharmacovigilance and for clinical reasearch …”