Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.
Safety, in this study, is related to a familiar place for death. A home death is not essential for and does not ensure a 'good death'. We all have a responsibility to ensure all places for dying can deliver the 'safe death'. Future research could explore the inter-relationships between safety and preference for home or home-like places of death.
A double-blind controlled trial of prophylactic factor VIII therapy has been carried out on nine severe haemophiliacs at the Lord Mayor Treloar College. Infusions were given once weekly and calculated to give a post-infusion plasma concentration of at least 0.25 I.U./ml of factor VIII. This regime reduced the overall bleeding frequency by 15%. The bleeding frequency in the first 3 days post-infusion was reduced by 66%. A moderate overall reduction in morbidity was also achieved. It is calculated that to reduce the incidence of bleeding in severe haemophiliacs by 15% would require a 73% increased usage of therapeutic materials. More than twice this amount of material is likely to be needed to reduce the bleeding frequency of the same group by 66%.
Home is the preferred place of rural death; however, more work is needed to explore influencing factors, absolute importance of preferences and experience of providing and receiving palliative care in rural hospitals which often function as substitute hospice.
SUMMARY Factor VIII-containing materials were administered to four severely affected haemophiliacs twice weekly in doses calculated to raise the factor VIII level to either 15 % or 30 % of average normal. The pooled results from those patients with statistically similar baseline bleeding frequencies showed a significant reduction in bleeding frequency on both doses in the first 48 hours. The 30 % dose produced a more significant reduction than the 15 % dose in the first 24 hours, but there was no significant difference between the two doses in the second 24 hours. It appears that to reduce the bleeding frequency of severely affected haemophiliacs by 60 % would require a two-and-ahalf-fold increase in therapeutic materials. A 90 % reduction would need nine times the amount of material currently in use.There have been great advances in the management of haemophiliac bleeds over the past decade but little attention has been paid to their prevention. Conflicting results have been reported in the trials of prophylaxis (Robinson et al., 1967;Nilsson et al., 1970;Ramsay and Parker, 1973). This may have been due in part to the several sources of potential observer and patient bias inherent in any attempt to evaulate such a regime. A double-blind controlled trial of prophylactic treatment has been carried out at the Treloar Haemophilia Centre (Aronstam et al., 1976) where personnel facilities and geographic considerations permit the separation of clinical management and trial administration. The weekly administration of factor VIII-containing material calculated to raise the factor VIII level to 0-25 IU/ml (25% of average normal) reduced the overall bleeding frequency in nine severe haemophiliacs by 15%. Analysis of the results on each individual day after a prophylactic dose showed a two-thirds reduction of bleeding frequency over the first two and one-third days. It was calculated that a two-and-a-half-fold increase in therapeutic materials would be needed to achieve this substantial reduction in bleeding frequency.In view of the implications for the limited financial and human resources available to service such a commitment, it is important to confirm these findings and to establish the lowest dose which might be "Present address:
Details concerning the frequency of bleeding in haeniophilia, Christmas discasc aiid von Willebrand's disease in adolescent boys are given. Thc results show that the frequency of bleeding remained constant throughout eight academic terms. There was 110 seasonal variation. Severity, as judged by frequency of blccding, cannot be correlated entirely with factor-VIII activity, there being evidence that there is some other factor in addition to factor VIII'coiicerned with bleeding in haemophilia.Of 61 haemophilic boys treated, only one developed an inhibitor to factor VIII. A higher incidence of haeniaturia was observed among boys with factor-VIII inhibitors. The advent ofreplacement therapy has increased the role oforthopaedic surgery. The requirements for the care of 50 boys suffering from serious coagulation defects arc discussed, and iiidicatioiis for further research are suggcstcd.
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