The influence of HIV, HCV and inhibitors on the quality of life and behavior of the disease in patients with haemophilia: An observational study

Inhibitors are the main complication in the treatment of haemophilia. A high percentage of adult patients were infected in past decades by HIV and HCV through factor concentrates. This study compared the quality of life of patients with hemophilia (QoL) and illness behavior in adult patients with haemophilia according to the development of inhibitors and HIV or HCV co-infection. This is an observational clinical study. 69 adult patients with haemophilia participated. We used A36 Hemophilia-QoL and IBQ questionnaires to measure the QoL and illness behavior, respectively. The dependent variables were type and severity of haemophilia, type of treatment, development of inhibitors, HIV and HCV infection, or both. We observed significant differences in the perception of QoL and illness behavior in patients according to the development of inhibitor and coinfection with HIV-HCV. We obtained four groups: the first and second group, which comprise 67% of the sample, exhibit behavior patterns indicating good adaptation to the disease and good QoL. The other two groups, which comprise 33% of the sample show behavior that is not well adapted to the disease, and poor quality of life. The development of inhibitors itself does not influence the quality of life and illness behavior in patients with haemophilia. Patients infected with HIV or HCV do not have a worse illness behavior compared to those uninfected. The development of inhibitors and HIV-HCV co-infection has a negative impact on quality of life and illness behavior in patients with haemophilia.

Evaluation of the impact of nursing clinics in the rheumatology services

Nursing clinics in rheumatology (NCRs) are organisational care models that provide care centred within the scope of a nurse’s abilities. To analyse the impact of NCR in the rheumatology services, national multicenter observational prospective cohort studied 1-year follow-up, comparing patients attending rheumatology services with and without NCR. NCR was defined by the presence of: (1) office itself; (2) at least one dedicated nurse; and (3) its own appointment schedule. Variables included were (baseline, 6 and 12 months): (a) test to evaluate clinical activity of the disease, research and training, infrastructure of unit and resources of NCR and (b) tests to evaluate socio-demographics, work productivity (WPAI), use of services and treatments and quality of life. A total of 393 rheumatoid arthritis and ankylosing spondylitis patients were included: 181 NCR and 212 not NCR, corresponding to 39 units, 21 with NCR and 18 without NCR (age 53 + 11.8 vs 56 + 13.5 years). Statistically significant differences were found in patients attended in sites without NCR, at some of the visits (baseline, 6 or 12 months), for the following parameters: higher CRP level (5.9 mg/l ± 8.3 vs 4.8 mg/l ± 7.8; p < 0.005), global disease evaluation by the patient (3.6 ± 2.3 vs 3.1 ± 2.4), physician (2.9 ± 2.1 vs 2.3 ± 2.1; p < 0.05), use of primary care consultations (2.7 ± 5.4 vs 1.4 ± 2.3; p < 0.001) and worse work productivity. The presence of NCR in the rheumatology services contributes to improve some clinical outcomes, a lower frequency of primary care consultations and better work productivity of patients with rheumatic diseases.