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Maintenance of treatment logs by haemophilia patients

Factor concentrates are a highly effective treatment and preventive strategy when used in the home setting for patients with haemophilia, but are costly and difficult to administer. In the developed world, home treatment for haemophilia is a common practice. However, for such treatment to be costeffective, adherence to prescribed treatment is necessary. We previously demonstrated in a comprehensive study of treatment adherence and Quality of Life (QoL) that data from outpatient treatment logs can be used to objectively quantify adherence, and to study critical factors that influence adherence in haemophilia patients [1]. One notable finding was that over 40% of our study population who utilized home treatment did not maintain treatment logs, making it difficult for haemophilia care-givers to assess the cost-effective use of these extraordinarily expensive treatment strategies for this group of patients. A recent study [2] of paediatric haemophilia treatment centre physicians using a self-report survey found that over 50% of the physicians who prescribed prophylaxis believed that more than 75% of patients on prophylaxis were highly adherent to recommended factor infusion therapy (defined as utilizing ‡80% of recommended treatment doses of factor). However, using treatment log data from adults and children on prophylaxis, our study demonstrated that only three of 18 subjects (17%) actually adhered to their prescribed treatment regimen more than 67% of the time [1]. These results suggest that actual adherence to self-administered, home-based treatment modalities may be significantly less than what physicians and medical care-givers believe it to be. Thus, for patients on home-based therapy, infusion logs provide an important tool in assessing adherence and understanding the factors that influence good treatment adherence practices in the outpatient setting. A major concern and observation amongst haemophilia care-givers is that many patients do not maintain home treatment logs. As part of our prospective study of treatment adherence and QoL, we assessed log keeping in a large cohort of haemophilia patients and the factors that influenced maintenance of home treatment logs. The study was conducted at the Louisiana Comprehensive Hemophilia Care Center in New Orleans, Louisiana. All patients who attended annual clinic visits over a 24-month period from August 1998 through July 2000, a total of 192 patients with FVIII or FIX deficiencies, were asked to participate in a study of adherence and 79 (41%), agreed to participate. Of these, 31 were children (median age = 14, range 5–17 years) and 48 were adults (median age = 28, range 18–56). Subjects were either using on-demand treatment regimens or prophylaxis. There were 39 subjects in the prophylaxis group and 40 in the on-demand group. All participating subjects approved the review of archived medical records and infusion logs (in the form of paper diaries) for the purpose of determining adherence to recommended treatment. All subjects completed QoL instruments that measure four health categories including physical functioning, general health, bodily pain and mental health. Subjects who are of age 18 and older completed the 36-Item Short-Form Health Survey SF-36 1 [3]. Subjects who are of ages 5–17 completed the Child Health Correspondence: Sue du Treil, PhD, LCSW, Tulane University Health Science Center, 1430 Tulane Avenue TB 31, New Orleans, LA 70112, USA. Tel.: +1 504 988 3567; fax: +1 504 988 3508; e-mail: sdutreil@tulane.edu