scholarly journals Hemochromatosis Patients as Voluntary Blood Donors

2004 ◽  
Vol 18 (6) ◽  
pp. 393-396 ◽  
Author(s):  
Tara E Power ◽  
Paul C Adams

The present study was designed to investigate hemochromatosis patients' suitability as blood donors as well as their perceptions and experience with the current public donation system. Participants were gathered from a list of current hemochromatosis patients (n=120) and members of the Canadian Hemochromatosis Society (n=1000). Of the 1120 surveys mailed out to these groups, 801 surveys were returned completed. The sample respondents had a mean age of 57.44 years (SD=12.73; range 19 to 87 years), and 57% were men. It was found that 20% (160) of the respondents have donated blood since their diagnosis; however, only 12% of the respondents indicated that they use voluntary blood donation as a means of maintaining their iron levels. Forty per cent of the respondents indicated that they had been refused from voluntary donation. Despite the fact that in May 2001 the Canadian Blood Services, in collaboration with the Canadian Hemochromatosis Society, began a promotion campaign to encourage hemochromatosis patients to become voluntary blood donors, the present study found that 15% of the respondents reported having been refused from the voluntary blood donation service due to the diagnosis of hemochromatosis. With respect to quality of life, it was found that individuals who donate blood were generally healthier with respect to physical functioning and bodily pain, however, these findings may indicate that hemochromatosis patients who are healthier are better able to donate at public blood banks, rather than that voluntary blood donation has an effect on the donors' physical functioning over phlebotomy clinic users. These study findings suggest that although there may be other medical factors limiting individuals from donating, hemochromatosis patients are interested in being voluntary blood donors and this potential resource is currently under-used.

2006 ◽  
Vol 64 (1) ◽  
pp. 20-23 ◽  
Author(s):  
Mara Renata Fernandes ◽  
Luciane B.C. Carvalho ◽  
Gilmar F. Prado

CONTEXT: Hemiparesia changes quality of life of patients with stroke making difficult a normal life. OBJECTIVE: To evaluate the effect of Functional Eletric Orthesis (FEO) applied over the paretic leg in the quality of life of stroke patients. METHOD: The quality of life of 50 stroke patients of Associacao de Assistencia a Crianca Deficiente (AACD) was evaluated with SF-36 questionnaire before and after the treatment with a FEO for rehabilitation of walking. We analyzed data according to gender and affected hemisphere. RESULTS: The average values from all domains of SF-36 improved significantly (p<0.001). Female patients improved more than male in Emotional Domain (p=0.04) and presented a trend to be better regarding Bodily Pain and Social Functioning. Patients with right hemiparesia improved more than those with left hemiparesia (p=0.02). CONCLUSION: FEO over a paretic leg is efficient to improve quality of life of stroke patients, mainly Physical Functioning.


2000 ◽  
Vol 6 (5) ◽  
pp. 338-342
Author(s):  
J HA Arnoldus ◽  
J Killestein ◽  
L EMA Pfennings ◽  
B Jelles ◽  
B MJ Uitdehaag ◽  
...  

Objectives: To determine the quality of life (QoL) of MS patients during the initial 6 months of treatment with interferon-b (IFN-b). Furthermore, to determine whether changes in QoL relate to disability, emotional state, therapeutic expectations or side effect profile. Background: IFN-b has been shown to have beneficial effects on the course of MS. Since the aim of IFN-b treatment is not to cure but to slow down the disease it is important to know how this treatment affects QoL. Surprisingly, the impact of treatment with IFN-b on QoL measures has not been extensively studied so far. Methods: Case report documentation, including EDSS, SF-36 and MADRAS scores, of 51 relapsing-remitting MS patients treated with IFN-b was obtained at baseline and at months 1, 3 and 6. Patients also filled in a form about their expectations of therapy and a questionnaire on side effects. Results: During treatment there was a significant linear trend indicating improvement in the role-physical functioning (RPF) scale of the SF-36 (F1,50=4.9, P=0.032). A transient decrease at month 1 was found in the scale for bodily pain, indicating more experienced pain (F1,50=19.8, P50.001). Subgroup analysis showed that patients with most depressive symptoms on the MADRAS at baseline contributed most to the increase in RPF scores over time (F1,24=5,6 P=0.026). Furthermore, we found associations between adverse event scores and several domains of QoL. Conclusions: Our findings suggest that IFN-b therapy has an impact on QoL of MS patients in that it improves role-physical functioning and transiently worsens experienced bodily pain. QoL during treatment with IFN-b is influenced by depressive symptoms at baseline as well as by treatment-associated side-effects.


2016 ◽  
Vol 01 (04) ◽  
pp. 025-028
Author(s):  
Monica Irukulla ◽  
Rama Vaghmare ◽  
Deepa Joseph ◽  
Syed Ahmed ◽  
Jyothi Jonnadula ◽  
...  

AbstractIntroduction: Comorbidities are common among cancer patients and with an aging population are becoming more prevalent. These can potentially affect the stage at diagnosis, treatment and outcomes of people with cancer. Despite the intimate relationship between comorbidity and cancer, there is limited consensus on how to record, interpret or manage comorbidities in the context of cancer. Addressing the impact of comorbid conditions in cancer patients warrants improvement in the evidence base from which to make treatment decisions for those with comorbidities.Methods: In this prospective study, 64 patients with breast cancer, underwent QOL assessment using FACT –B questionnaire at three time points- pre-radiation and three and six months post radiation.Results: 29(46%) patients had comorbidities of which 23 (35%) had cardiovascular comorbidities and 6 had other comorbidities. The co-morbidities were negatively associated with multiple domains of quality of life, including physical functioning, general health, bodily pain. Patients with diabetes and hypertension had significantly lower scores in physical functioning in comparison to patients without diabetes and hypertension, but improved after treatment. In majority of patients the overall scores were less in patients with co-morbidities compared to patients without any co-morbidity.Conclusion: Comorbidities can significantly affect the quality of life in patients with comorbidities. Hence greater research into the QOL issues for better patient care and symptom management especially during the transitioning phase from active care to follow up will help clinicians improve the quality of care and interdisciplinary co-ordination.


2019 ◽  
Vol 41 ◽  
pp. e45525
Author(s):  
Carlos Augusto Faria ◽  
Dayse Mary da Silva Correia ◽  
Karen Soto Perez Panisset ◽  
Maria Luiza Garcia Rosa

The objective of this study was to identify the factors associated with the impairment of quality of life (QoL) in community-dwelling individuals with LUTS. A randomized sample of the population registered in the Family Health Program - Niterói aged 45 years or over was selected. Information about demographic, socioeconomic and lifestyle factors, co-morbidities and nocturia was collected. The NANDA-I taxonomy was used to identify the other LUTS, and QoL evaluation was performed in accordance with the SF-36 Short Form questionnaire (SF36-SF). For the SF36-SF domains (outcome) associated with LUTS, multiple logistic models were tested including the urinary symptoms and the sociodemographic and associated clinical variables. Stress urinary incontinence was associated with white skin, female gender, obesity, smoking, alcohol intake, depression and low scores in all evaluated domains of QoL. Nocturia was associated with advanced age, low schooling level, higher BMI, hypertension, diabetes, health insurance and the lowest scores in all evaluated domains of Qol, except for the Role Emotional. According to multivariate analysis, stress incontinence and depression are associated with the highest risks of low scores in General Health, Physical Functioning and Vitality domains, while nocturia and obesity showed association with the highest risks of low scores in Physical Functioning, Bodily-Pain and Vitality domains.


2006 ◽  
Vol 10 (01) ◽  
pp. 57-61 ◽  
Author(s):  
Fitnat Dinçer ◽  
Özlem Erol ◽  
Ayçe Atalay

Objective: To assess effect of physical therapy including both physical agents and exercise on pain, physical functioning and quality of life in patients with knee osteoarthritis. Methods: Twenty-seven patients (25 female and two male) with knee osteoarthritis were included in the study. Besides sociodemographic variables, presence of chronic diseases, analgesic use, recreational activites were recorded. A standard knee examination was performed and anteroposterior and lateral knee radiographs were obtained. Pain was measured using visual analogue scale (VAS), numeric scale and Likert scale. Pain, stiffness and physical function was assessed using Likert-scaled version of the Western Ontario McMaster Universities Osteoarthritis Index (WOMAC). For quality of life evaluation Medical Outcomes Study Short Form 36 (SF-36) was utilized. Evaluations were done at baseline and 1 month after completion of physical therapy sessions. Results: Significant reduction of pain measurements namely VAS, numeric scale and Likert scale was observed as a result of physical treatment (p = 0.0001, p = 0.0001 and p = 0.001 respectively). In all 3 subscores of WOMAC (pain, stiffness and physical function) significant improvement was noted due to treatment (p = 0.0001, p = 0.012 and p = 0.0001 respectively). Similarly, physical functioning, role-physical, bodily pain and vitality and social functioning subscores demonstrated significant reductions after therapy. (p = 0.039, p = 0.001, p = 0.0001, p = 0.001 and p = 0.035 respectively). Conclusion: Physical therapy including both physical agents and exercise leads to signifcant improvements in pain, physical functioning and quality of life. This change was demonstrated by both generic and disease specific outcome measures.


Author(s):  
Anita Rahmawati ◽  
Hiroyuki Sawatari ◽  
Miyuki Tsuchihashi-Makaya ◽  
Yuko Ohtsuka ◽  
Mami Miyazono ◽  
...  

BACKGROUND: Implantable cardioverter-defibrillator (ICD) has improved prognosis of patients with fatal arrhythmias and ICD implantation has increased. However, there have been known ICD-related psychological problems and impaired quality of life (QOL). There are still limited studies about gender differences in the response to ICD therapy in Japanese population. This paper compared female and male ICD patients on health-related QOL and psychological factors. The aim of the current study were to examine whether women are at a greater risk of poorer QOL and psychological disturbance. METHODS: We studied consecutive ICD patients (n=179, males: 145, females: 34, mean age: 61±16) with Short Form-8 Health Survey (SF-8), Beck Depression Inventory (BDI), State-Trait Anxiety Inventory (STAI), and Impact of Event Scale-Revised (IESR). One-way multivariate analysis of variance (MANOVA) was performed to examine the relationship between gender and health-related QOL and psychological factors. RESULTS: Women were younger (53.5±19.3 vs 62.2±14.5, P < 0.05) and less likely to be smoker compared to men (8.8% vs 45.5%, P < 0.001). Women were less likely to have ischemic heart disease (17.6% vs 37.2%, P< 0.05). Majority of patients (62%) had a secondary indication for ICD. MANOVA showed women to have impaired QOL on role physical functioning (P <0.05) and bodily pain (P < 0.05) subscales of the SF-8. When adjusting for older age, female gender was associated with impaired QOL on the physical functioning, role physical functioning, bodily pain, and social functioning subscales. Ischemic etiology was not associated with any of the quality of life subscales. Overall of QOL, women have worse physical component summary (PCS) score (44.3±8.8 vs 48.7±9, P <0.05), but no significant differences in mental component summary (MCS) score. Women have greater BDI score than men (9.3±9.2 vs 5.8±7.4, P <0.05). There were no differences in anxiety-state and anxiety-trait between women and men, as well as IESR score. CONCLUSION: In Japanese population, women and men did not differ on mean QOL score, except for women reporting poorer quality of life on two subscales, role physical functioning and bodily pain. In terms of QOL thoroughly, PCS was worse in women than men. There was high tendency of depression in women than men. These gender difference were similar to that of foreign country. Based on the finding in gender differences, it can be consideration to manage those potential decline of quality of life and psychological problems in ICD patients.


Kardiologiia ◽  
2019 ◽  
Vol 59 (11S) ◽  
pp. 36-43
Author(s):  
G. S. Pushkarev ◽  
V. A. Kuznetsov ◽  
Ya. A. Fisher ◽  
A. D. Sapozhnikova ◽  
A. M. Soldatova ◽  
...  

Purpose. To assess the quality of life (QoL) changes in patients with congestive heart failure (CHF) one year after cardiac resynchronization therapy (CRT). Methods. The study included 82 patients (68 males and 14 females) aged from 30 to 74 (mean age 55.8±9.2 years) who underwent implantation of a biventricular cardiac pacemaker for CRT. Depending on the echocardiographic response to CPT, the patients were divided into two groups: 56 people with a positive response (responders) and 26 people with insufficient response (non-responders). The SF-36 questionnaire was used to measure QoL. The results of the questionnaire were represented as scores over the eight subscales: physical functioning (PF), role-physical functioning (RP), bodily pain (BP), general health (GH), vitality (VT), social functioning (SF), role-emotional (RE), and mental health perceptions (MH). The QoL assessment was performed before and one year after CRT. Results. Patients with CHF one year following CRT had significantly higher rates of improvement in PF QoL (before CRT 46.28±26.16; one year after CRT 53.05±27.65, p=0.023). The statistical tendency towards QoL improvement was revealed: VT QoL (before CRT 47.07±20.12, after CRT 51.83±20.07, p=0.081), SF (before СРТ 61.58±25.06, after CRT 67.07±24.57, p=0.088). Group of responders one year after CRT had significantly higher rates of improvement of QoL in PF (45.2±26.0 before CRT vs 57.1±26.4 after CRT, p=0.001); in VT (46.5±20.8 vs 54.4±19.7, p=0.010) and in SF (60.9±26.4 vs 70.8±20.8, p=0.012). The statistical tendency towards QoL improvement was revealed in BP (57.5±25.1 before CRT vs 64.8±23.8 after CRT, p=0.079), in GH (45.3±16.4 vs 49.1±18.0, p=0.079) and in MH (57.7±18.9 vs 62.5±17.7, p=0.081). In the group of nonresponders the statistical tendency towards decrease in QoL was detected during one year after CRT in RE (46.2±45.3 before CRT vs 26.9±41.1 after CRT, p=0.07). No significant differences were found in paired comparisons of other QoL indicators. Conclusion. We revealed significant increase in PF index in patients with CHF one year following CRT. The study showed that QoL was generally improving one year following CRT in responders while a tendency towards decrease in RE was detected in non-responders. 


2021 ◽  
Vol 15 (3) ◽  
pp. 62-68
Author(s):  
M. N. Chikina ◽  
O. V. Zhelyabina ◽  
M. S. Eliseev

Gout can have a significant impact on the quality of life (QoL) of patients.Objective: to assess the dynamics of QoL indicators and the possibility of achieving the target level of uric acid (UA) in patients with gout on febuxostat therapy, with ineffectiveness and / or contraindications to the allopurinol administration.Patients and methods. The prospective, single-center study included 80 patients with gout. The follow-up period was at least 6 months of allopurinol or febuxostat (Azurix®) therapy in doses required to achieve the target UA level. When urate-lowering therapy was initiated, allopurinol 100 mg per day was prescribed, followed by dose titration (up to maximum of 900 mg per day) until the target UA level was reached (<360 μmol/L). Patients with ineffectiveness of allopurinol and / or adverse reactions (ADRs) were transferred to febuxostat 80–120 mg per day. To prevent arthritis attacks, all patients received low doses of non-steroidal anti-inflammatory drugs or colchicine 0.5 mg per day or glucocorticoids 7,5 mg per day (in prednisolone equivqlent). At the first and last visits, patients on febuxostat completed the SF-36 questionnaire.Results and discussion. After 6 months of follow-up, 70 (88%) patients received urate-lowering therapy, of whom 51 (73%) reached the target UA level. Allopurinol dosage titration required 26 patients, of whom 14 (54%) achieved the treatment goal. Due to the ineffectiveness of allopurinol, 32 patients were switched to febuxostat, which allowed to achieve normouricemia in 69% of cases. Fifteen (68%) of 22 patients who were initiated with febuxostat due to ADRs to allopurinol also achieved the target UA level. Patients who received febuxostat and reached the target UA level improved QoL indicators: role-physical functioning, bodily pain, general health, vitality and general physical well-being (p<0.05 in all cases). Patients who did not reach the target UA level on febuxostat therapy improved such indicators as physical functioning, role-physical functioning, and bodily pain (p<0.05 in all cases). High compliance was observed in 63% of patients, treated with febuxostat and in 36% of patients, treated with allopurinol.Conclusion. In patients with ineffectiveness or intolerance to allopurinol, in 69% of cases febuxostat allows to achieve the target UA level and improving QoL and complience.


Blood ◽  
2008 ◽  
Vol 112 (11) ◽  
pp. 5154-5154
Author(s):  
Vanderleia Costa Silva ◽  
Manuella Sampaio Almeida ◽  
Vania T. M. Hungria ◽  
Leina Yukari Etto ◽  
José Salvador Rodrigues de Oliveira ◽  
...  

Abstract Multiple myeloma (MM) causes great impact in quality of life (Q/L), since patients become dependant of others even for routine activity execution and personal care. Objectives: To characterize the impact of MM in the Q/L of patients treated in two public institutions of Sao Paulo State, Brazil, using a generic (SF-36) and a specific questionnaire for oncologic patient (QLQ-C30), applied in three different moments: at diagnosis, after the end of clinical treatment and at day +100 after autologous hematopoietic stem cell transplant (ASCT). Patients and methods: From March 2006 to August 2007 we evaluated 49 patients with MM, using the two questionnaires. Analysis was made through ANOVA, Post hoc and T-paired test comparing the three groups. Results: 88.6% of included patients have family budget lower than US$ 600.00/month (Economic Class C, D or E). The generic questionnaire SF-36 demonstrated that Physical Functioning, Role-Physical and Bodily Pain were statistically different in all three groups, favoring the day +100 post-ASCT group (ANOVA). SF-36 still demonstrated improvement in Role-Emotional when MM post treatment group was compared with the day + 100 post-ASCT group (T-paired Test). The QLQ-C30 questionnaire confirmed what had been demonstrated by the SF-36 in relation to the Physical Functioning and Bodily Pain plus improvement in the following aspects: Role Functioning, Fatigue, Lack of Appetite and Constipation, favoring the day + 100 post-ASCT group (ANOVA). QLQ-C30 also detected a significant improvement in Social Aspect in patients with MM after day +100 of ASCT. Conclusion: The specific questionnaire for cancer patients QLQ-C30 seems to be more informative than the generic questionnaire SF-36 and reflects the real benefit of ASCT in Q/L of MM patients from two public Brazilian institutions, which provide assistance for economically challenged population.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ariane Mamguem Kamga ◽  
Leila Bengrine-Lefevre ◽  
Valérie Quipourt ◽  
Laure Favier ◽  
Ariane Darut-Jouve ◽  
...  

Abstract Background With the growing number of older endometrial cancer (EC) and ovarian cancer (OC) survivors, data on long-term health-related quality of life (HRQoL) became an important issue in the management of older patients. So, the aim of this study was to describe and compare according to age long-term HRQoL, sexual function, and social deprivation of adults with either EC or OC. Methods A cross-sectional study was set up using data from the Côte d’Or gynecological cancer registry. A series of questionnaires assessing HRQoL (SF-12), sexual function (FSFI), anxiety/depression (HADS), social support (SSQ6) and deprivation (EPICES) were offered to women with EC or OC diagnosed between 2006 and 2013. HRQoL, sexual function, anxiety/depression, social support and deprivation scores were generated and compared according to age (< 70 years and ≥ 70 years). Results A total of 145 women with EC (N = 103) and OC (N = 42) participated in this study. Fifty-six percent and 38% of EC and OC survivors respectively were aged 70 and over. Treatment did not differ according to age either in OC or EC. The deprivation level did not differ between older and younger survivors with OC while older survivors with EC were more precarious. The physical HRQoL was more altered in older EC survivors. This deterioration concerned only physical functioning (MD = 24, p = 0.012) for OC survivors while it concerned physical functioning (MD = 30, p < 0.0001), role physical (MD = 22, p = 0.001) and bodily pain (MD = 21, p = 0.001) for EC survivors. Global health (MD = 11, p = 0.011) and role emotional (MD = 12, p = 0.018) were also deteriorated in elderly EC survivors. Sexual function was deteriorated regardless of age and cancer location with a more pronounced deterioration in elderly EC survivors for desire (p = 0.005), arousal (p = 0.015) and orgasm (p = 0.007). Social support, anxiety and depression were not affected by age regardless of location. Conclusion An average 6 years after diagnosis, the impact of cancer on HRQoL is greatest in elderly survivors with either EC or OC.


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