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1.
Haemophilia ; 25(4): 651-655, 2019 Jul.
Article in English | MEDLINE | ID: mdl-31180617

ABSTRACT

INTRODUCTION: During the 1970s and early 1980s, Canada's comprehensive care haemophilic programs were established. Newer therapies led to a rapid increase in quality of life and expected life span for persons with haemophilia (PWH). The outlook was bright. However, beginning in 1982, the appearance of HIV/AIDS transmitted by treatment products led to the 'tainted blood' era with its devastating impact on PWH, recently highlighted in the Canadian Broadcasting Corporation mini-series 'Unspeakable'. What has received less notice is how the healthcare professionals (HCP) managing these patients then were affected. AIM: To report the emotional effects of that era on HCPs. METHODS: In developing an oral history of haemophilic care in Canada we have interviewed 76 HCPs, the majority of whom had worked in haemophilic clinics during that era. During each interview, we asked the interviewee to reflect on what this did to haemophilic care and to him/herself. The interview responses were analysed. RESULTS: HCPs have been markedly affected by the events of the 1980s with feelings that persist more than 30 years later. Most related to the loss of so many of their patients and the inability to alter the rapidly changing course of events at the time. CONCLUSION: The 'tainted blood' era had persistent strong emotional effects on HCPs. They were helpless to stop or to mitigate the devastating epidemics. Wellness support programs were less well developed then. While the focus is in the Canadian context, we suggest that a parallel can be drawn within haemophilic communities in other countries.


Subject(s)
Blood Transfusion , Emotions , HIV Infections/blood , Health Personnel/psychology , Adult , Canada , Fear , Female , Grief , Guilt , Hemophilia A/therapy , Hemophilia B/therapy , Humans , Male , Memory , Middle Aged , Quality of Life , Stress, Psychological
3.
Lancet Haematol ; 5(6): e252-e260, 2018 Jun.
Article in English | MEDLINE | ID: mdl-29731369

ABSTRACT

BACKGROUND: Severe haemophilia A has high morbidity, and treatment, while effective, is very expensive. We report the 16-year follow-up of the Canadian Hemophilia Prophylaxis Study, which examined the effectiveness of tailored frequency-escalated primary prophylaxis with a focus on health outcomes within the domains of body structures and functions, and activities and participation (according to the WHO International Classification of Functioning, Disability and Health [WHO-ICF] framework) and a view to reducing consumption of costly clotting factor, which accounts for more than 90% of the cost of care of severe haemophilia. METHODS: In this longitudinal study, boys with severe haemophilia A from 12 Canadian centres were enrolled at age 1·0-2·5 years. They were treated with standard half-life recombinant factor VIII (SHL-rFVIII), beginning as once-weekly prophylaxis with 50 IU/kg and escalating in frequency (with accompanying dose adjustments) in response to breakthrough bleeding as determined by the protocol. The primary endpoint for this analysis was joint health, as measured by the modified Colorado Child Physical Examination Scores (CCPES) at study end. All analyses were done by intention to treat. The trial is complete, and is registered with ClinicalTrials.gov, number NCT01085344. FINDINGS: Between June 26, 1997, and Jan 30, 2007, 56 boys were enrolled. They were followed for a median of 10·2 years (to a maximum of 16·1 years). Median rFVIII usage was about 3600 IU/kg per year. The median end-of-study CCPES physical examination score was 1 (IQR 1-3; range 0-12) for the left ankle and 1 (1-2; 0-12) for the right ankle, with all other joints having a median score of 0. No treatment-related safety events occurred over the duration of the study, including central venous catheter infections. The median annualised index joint bleeding rate was 0·95 per year (IQR 0·44-1·35; range 0·00-13·43), but 17 (30%) patients had protocol-defined unacceptable breakthrough bleeding at some point during the study. INTERPRETATION: Tailored frequency-escalated prophylaxis leads to very little arthropathy and very good health outcomes within the WHO-ICF domains, and only uses a moderate amount of expensive clotting factor as compared with standard prophylaxis protocols. Some sequelae of bleeding were observed in our cohort, and future studies should consider a more stringent protocol of escalation. FUNDING: This study was initially funded by grants from the Medical Research Council of Canada/Pharmaceutical Manufacturers Association of Canada Partnership Fund and the Bayer/Canadian Blood Services/Hema-Quebec Partnership Fund. Subsequent renewals were funded by Bayer.


Subject(s)
Factor VIII/therapeutic use , Hemarthrosis/prevention & control , Hemophilia A/drug therapy , Adolescent , Canada , Child , Child, Preschool , Disease Progression , Dose-Response Relationship, Drug , Drug Administration Schedule , Factor VIII/administration & dosage , Hemarthrosis/etiology , Hemophilia A/complications , Hemophilia A/pathology , Humans , Infant , Joints/diagnostic imaging , Longitudinal Studies , Male , Patient Compliance
4.
Hum Resour Health ; 10: 18, 2012 Jul 25.
Article in English | MEDLINE | ID: mdl-22830486

ABSTRACT

BACKGROUND: Some studies have suggested that young physicians may have different expectations and practice behaviours than their older generational counterparts, including their reasons for wanting to remain or leave a community. This study examined the factors associated with a physician's decision to leave a work location. We compared different generations of physicians to assess whether these factors have changed over generations. METHODS: We conducted semi-structured, qualitative interviews with 48 physicians who graduated from two Canadian medical schools. We asked each physician about the number and nature of work location changes and the factors related to their decisions to leave each location. Interview transcripts and notes were analysed using a thematic analysis approach. RESULTS: Dissatisfaction with the working environment was the most frequently cited reason for leaving a location for physicians of all generations. Elements which contributed to the quality of the work environment included the collaborative nature of the practice, the relationship with administrators, and access to resources and personnel. For younger physicians, the work environment had to meet their personal expectations for work-life balance. While remuneration level was given by some physicians as the key reason for leaving a location, for others it was the "last straw" if the work environment was poor. A small number of older generation physicians moved in response to political events and/or policies CONCLUSIONS: We documented generational differences in physicians' reasons for choosing a work location. We found that a poor work environment was universally the most important reason why a physician chose to leave a location. A few physicians who were unsatisfied with their work location identified level of remuneration as an additional reason for leaving. Some older generation physicians cited political climate as a reason for leaving a work location. While economic factors have largely been the focus of recruitment and retention initiatives, our findings highlight the importance of the work environment and organizational culture on the retention of physicians of all generations.

5.
Can J Neurol Sci ; 39(2): 189-95, 2012 Mar.
Article in English | MEDLINE | ID: mdl-22343152

ABSTRACT

BACKGROUND: Iron deficiency anemia (IDA) has been implicated in the etiology of transient ischemic attack and ischemic stroke. This study aimed to: 1) document IDA prevalence in patients ≥ 65 years of age admitted to hospital with transient ischemic attack or first ischemic stroke, and 2) investigate dietary intake as a predictor of iron status. METHODS: Ninety-four patients were enrolled. An algorithm containing values for hemoglobin, ferritin, total iron binding capacity, transferrin saturation, and serum transferrin receptor measured at admission was used to identify IDA. Usual dietary intake was assessed with the Clue II food frequency questionnaire. RESULTS: Prevalence estimates were 6.4% for IDA, 2.1% for iron deficiency without anemia, and 6.4% for anemia from other causes. IDA prevalence was significantly higher than published National Health and Nutrition Examination Survey III (NHANES III) estimates for gender-specific age groups ≥ 70 years (One-Sample Proportion Test; males p = 0.038 [n= 37]; females p = 0.002 [n=44]). A comparison of IDA prevalence against selected controls from the NHANES III database yielded an odds ratio (OR) of 6.3, 95% confidence interval (CI) 0.8 to 53.7, which was not statistically significant (Fisher's Exact Test; n=94; p = 0.118). Multivariate linear regression analysis of dietary intake with indicators of iron status (n=58) revealed only iron supplements (p = 0.013) and heme iron intake (p = 0.038) as negative predictors of total iron binding capacity (p<0.05). CONCLUSIONS: These findings support the initiation of a prospective case control study to investigate IDA as a risk factor for ischemic stroke in elderly patients.


Subject(s)
Anemia, Iron-Deficiency/epidemiology , Brain Ischemia/complications , Ischemic Attack, Transient/complications , Stroke/complications , Aged , Aged, 80 and over , Anemia, Iron-Deficiency/blood , Anemia, Iron-Deficiency/complications , Anemia, Iron-Deficiency/diagnosis , Female , Ferritins/blood , Hemoglobins/metabolism , Humans , Male , Prevalence , Prospective Studies , Receptors, Transferrin/blood , Risk Factors
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