Introduction Extended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B. Methods This cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses. Results The sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = − 0.11, p < 0.05, Adjusted R 2 = 0.06), and shows a trend association with lower practical impact (β = − 0.09, p < 0.10, Adjusted R 2 = 0.05). The matched cohort analysis also revealed that people on extended half-life factor product had lower Emotional Impact and Practical Impact scores (t = − 2.95 and − 2.94, respectively, p < 0.05 in both cases). No differences were detected on the PedsQL or the WPAI. Conclusion The reduced required frequency of factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact.
CAM use is less prevalent in northern Italy than in most other European countries. CAM users were found to have a lower quality of life than CAM non-users.
9032 Background: The Restless Legs Syndrome (RLS) is one of the commonest neurological sensorimotor disorders consisting in periodic limbs movements during the sleeping time that lead to severe insomnia and quality of life deterioration. The prevalence of RLS in normal population is 7 and 11% in males and females respectively. RLS correlated with female sex and iron deficiency. Chronic pain, sensory polineuropathy and the use of dopamine antagonist drugs can induce or exacerbate RLS. Dopamine agonists are extremely active drugs in controlling RLS. The prevalence of RLS in cancer patients is unknown. Methods: The presence of RLS, by means of the essential diagnostic criteria provided by the International RLS Study Group (Allen RP, Sleep Med; 2003), was tested in 257 consecutive cancer patients (119 males and 138 females) with different malignancies belonging to two different Medical Oncology centres. All patients were receiving chemotherapy. Functional Assessment of Cancer Therapy General (FACT-G), Hospital Anxiety and Depression Scale (HADS) and Mini Mental Adjustment to Cancer Scale (Mini-MAC) questionnaires were administered concomitantly to assess the impact of RLS on quality of life, anxiety or depression and styles of coping, respectively. Results: RLS was present in 47 patients (18.3%), 14 males (11.8%) and 33 females (23.9%); (p=0.01). RLS directly correlated with pain (p<0.0001), nausea (p<0.001), worse physical well-being (p=0.007), emotional well- being (p=0.001) and functional well-being (p=0.02). RLS affected patients showed higher levels of anxiety (p<0.001) and depression (p=0.001). The styles of coping consisting in anxious preoccupation and hopeless were also more represented in the RLS affected patients (p=0.04 and p=0.02 respectively) than their counterparts. Conclusions: RLS is frequent and underdiagnosed in cancer patients. It may cause anxiety, depression and quality of life deterioration. Early RLS detection and prompt introduction of dopamine agonists may improve patient quality of life. No significant financial relationships to disclose.
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