Haemophilia home care: A qualitative evaluation study of the Be Involved infusion program

Abstract

Introduction In Canada, patients with haemophilia can receive health care through a limited number of specialized haemophilia treatment centres. Treatment of this X‐linked bleeding disorder through self‐infusion of factor replacement is common; however, some individuals with haemophilia require additional infusion support from medical professionals. While provincially funded outreach clinics and telehealth are available, pharmaceutical companies that supply factor have developed novel home infusion programs wherein registered nurses assist/manage factor administration in the patients’ homes. Aim The current qualitative evaluation explored the real‐world effectiveness and impact of the Be Involved (Pfizer Canada) home infusion service, from provider, program end‐user and needs analysis perspectives. Methods Qualitative interviews with patients and caregivers who had used Be Involved (n = 7) and Be Involved Staff (n = 8) provided important insights and recommendations for program improvement initiatives. Also included were needs assessments of potential end‐users (n = 11) as a means to making program adjustments. Results The inductively derived findings revealed Be Involved as a highly valued, though key specialized service providing significant assistance to a small number of haemophilia patients. Augmenting traditional services, the program was endorsed as easing the burden of haemophilia care, while the Be Involved nurses were affirmed as highly effective and critical to the program's success. A lack of program promotion and awareness was evident – limiting uptake, amid communication and systems delivery challenges. Conclusions The current evaluation findings inform our recommendations for, and brief discussion of, the need for stronger promotional strategies and improved communication lines to increase the reach and efficiencies of the Be Involved program.

Health-Related Quality of Life, Treatment Satisfaction and Adherence Outcomes of Haemophilia Patients Living in a German Rural Region

“…The introduction of a MHOC service is in the trend of other initiatives such as home infusion programs which are financed by pharmaceutical companies in Germany where registered nurses assist/manage factor administration in the patients' homes or telehealth. [27][28][29] Electronic medical devices such as Smart medication or Haemoassist allow the haemophilia health care provider to monitor patients via the electronic bleeding diary and to quickly identify patients in need of treatment changes and, to plan individualized therapy modifications prior to patient visits. 30,31 These kinds of initiatives are considered highly effective easing the burden of haemophilia care for both patients and physicians and increasing the adherence.…”