Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent ß-Thalassemia in the USA and UK: A Qualitative Assessment.

BACKGROUND: Individuals living with transfusion-dependent ß-thalassemia (TDT) experience reduced health-related quality of life due to fatigue and chronic pain, which cause disruptions to daily life. Currently, limited qualitative data exist that describe these impacts. OBJECTIVE: This study aimed to examine the ways in which symptoms and current treatments of TDT impact health-related quality of life, to holistically describe the humanistic burden of TDT, and to identify the unmet needs of individuals living with TDT. METHODS: Adults (aged ≥ 18 years) with TDT and caregivers of adolescents (aged 12‒17 years) with TDT participated in semi-structured one-on-one virtual interviews and focus group discussions. Interviews were conducted in the USA and UK and lasted approximately 60 minutes. After transcription, the interviews were analyzed thematically using a framework approach. RESULTS: A total of ten interviews/focus group discussions (six interviews and four focus group discussions) were conducted with 14 adults with TDT and two caregivers of adolescents with TDT. A framework analysis revealed five themes describing health-related quality of life (negative impacts on daily activities, social life, family life, work and education, and psychological well-being) and three themes describing the lived experience of TDT (impact of red blood cell transfusions and iron chelation therapy, treatment, and stigma). Physical, psychological, and treatment-related factors contributed to negative impacts on daily activities, social and family life, and work and education. Concerns about reduced lifespan, relationships and family planning, and financial independence were detrimental to participants' mental well-being. Participants reported having high resilience to the many physical and psychological challenges of living with TDT. A lack of TDT-specific knowledge among healthcare professionals, particularly regarding chronic pain associated with the disease, left some participants feeling ignored or undermined. Additionally, many participants experienced stigma and were reluctant to disclose their disease to others. CONCLUSIONS: Individuals living with TDT experience substantial negative impacts on health-related quality of life that disrupt their daily lives, disruptions that are intensified by inadequate healthcare interactions, demanding treatment schedules, and stigma. Our study highlights the unmet needs of individuals living with TDT, especially for alternative treatments that reduce or eliminate the need for red blood cell transfusions and iron chelation therapy.

EQ-5D-3L health state utility values in transfusion-dependent thalassemia patients in Malaysia: a cross-sectional assessment.

PURPOSE: There is a gap of information describing the health state utility values (HSUVs) of transfusion-dependent thalassemia (TDT) patients in Malaysia. These values are useful in the assessment of health-related quality of life (HRQoL), economic evaluations and provide guidance to disease management decisions. The objective of this study was to estimate and derive HSUVs associated with the treatment and complications of TDT patients in Malaysia using the EQ-5D-3L instrument. METHODS: A cross-sectional survey using the EQ-5D-3L instrument was conducted between May to September 2018 across various public hospitals in Malaysia. Using a multi-stage sampling, patients diagnosed with TDT and receiving iron chelating therapy were sampled. The findings on the EQ-5D-3L survey were converted into utility values using local tariff values. A two-part model was used to examine and derive the HSUVs associated with the treatment and complications of iron overload in TDT. RESULTS: A total of 585 patients were surveyed. The unadjusted mean (SD) EQ-5D-3L utility value for TDT patients were 0.893 (0.167) while mean (SD) EQ VAS score was 81.22 (16.92). Patients who had more than two iron overload complications had a significant decline in HRQoL. Patients who were on oral monotherapy had a higher utility value of 0.9180 compared to other regimen combinations. CONCLUSION: Lower EQ-5D-3L utility values were associated with patients who developed iron overload complications and were on multiple iron chelating agents. Emphasizing compliance to iron chelating therapy to prevent the development of complications is crucial in the effort to preserve the HRQoL of TDT patients.

Assessment of blood supply and usage pre- and during COVID-19 pandemic: A lesson from non-voluntary donation.

BACKGROUND: Ensuring steady stream of safe blood is the ultimate goal of blood transfusion practice. The current COVID-19 pandemic has affected almost every part of life and economy. Consequently, this study sets off to assess the effect of the pandemic on blood supply and blood transfusion in the University of Calabar Teaching Hospital. METHODS: Data from the Donor Clinic and Blood Group Serology Unit of the University of Calabar Teaching Hospital were retrospectively extracted to evaluate supply and use of blood before and during COVID-19 pandemic. RESULT: A total of 1638 donors were recorded within the study period. Age range 15-29 and 30-44 years constituted majority of the subjects (58.9% and 33.4%, respectively). The donor pool were male-dominated. Commercial donors (61.7%) and family replacement donors (30.6%) constituted majority of the donor pool. Most of the donor pool were students (37.1%), public servants (22.8%) and artisans (18.6%). A concomitant decrease of 26.1% and 18.9% were recorded in blood donation and request during the COVID-19 pandemic. CONCLUSION: Blood supply was not significantly affected in our study center as both requests and donations decreased. Consideration for improving family replacement donation was advised.

Psychosocial and cognitive engineering contributions to blood transfusion.

Among the research developed in social psychology, there is a field of study questioning the mechanisms that explain prosocial behaviors. In 1956, the first links between transfusion medicine and social psychology were formed, with the study of underlying motivations to blood donation behavior. Sixty years later, the number of "fundamental" and "applied" research has widely increased, and we now have a theoretical understanding of blood donation engagement's levers, as well as experimental demonstrations of methods to activate these levers. Thus, the literature offers several strategies experimentally verified to improve the recruitment and retaining of blood donors. These methods can go from specific speeches when soliciting donors, to changes in the blood donation environment, etc. They aim either at impacting the donation experience, at obtaining a change in the donor's behavior, or at changing the determinants of blood donation. Yet, it is clear that the knowledge from the research in social psychology is not really deployed on the field by the organizations that could benefit from it. In this article, we will try to develop the difficulty regarding the application of fundamental and experimental knowledge, and to underline the implications for the blood transfusion establishments. We will then present the psychosocial and cognitive engineering method, and argue its relevance to answer this problematic.

Health care reform and Diagnosis Related Groups in Germany: The mediating role of Hospital Liaison Committees for Jehovah's Witnesses.

Resulting from health care reform in Germany that was implemented in 2003-2004, a new medical classification system called the "Diagnosis Related Groups" (DRGs) was introduced in hospitals. According to the media, social scientists, and a few physicians interviewed in this study the policy negatively transformed the German health care system by allowing the privatization of the hospital sector consistent with the neoliberal health care model. Allegedly, this privileged economic values over the quality of health care and introduced competition between hospitals. Nevertheless, members of the Hospital Liaison Committees (HLCs) of Jehovah's Witnesses argued that the DRGs system could be used to the advantage of Jehovah's Witness (JW) patients. HLCs often assist in the patient's search by providing names of physicians that would be willing to refrain from blood transfusions. This article draws from nine months of ethnographic research with Jehovah's Witnesses, including members of the HLCs, carried out primarily in Berlin between 2010 and 2012. By focusing on JWs, whose refusal of blood transfusions is often exemplified as particularly difficult for the biomedical profession, it addresses the "unintended" consequences of the introduction of DRGs into the German health care system that remain unexplored by health and social science scholarship. It argues that although JWs have long been associated with the judicialization of religious freedom globally, they do not equally engage in the judicialization of health in countries such as Germany. The reason for this is embedded not only in health care policy that favors mediation over medical malpractice litigation. It also results from the synergy of health care reforms that prioritize standardizing and economizing measures such as DRGs as well as practices implemented by Patient Blood Management programs that JW institutions, such as HLCs, have tapped into.

Perceived blood transfusion safety: a cross-European comparison.

BACKGROUND AND OBJECTIVES: During the past decades, blood transfusions have become an ever safer clinical procedure in developed countries. Extensive donor screening together with improved infectious disease testing has led to a minimization of risks for transfusion recipients. Still, the general public perceives the process of blood transfusion as risky. MATERIALS AND METHODS: This study tested variation in perceived transfusion safety across countries and explained it with individual and country factors. We examined whether individual demographic and macro-level factors (i.e. Human Development Index and Power Distance Index) explain variation within and across European countries. We applied multilevel models to 2009 Eurobarometer data collected in 26 countries (N = 20 874). RESULTS: Results were largely in line with expectations derived from risk perception and power and status difference theories. Generally, women, older adults, the lower educated and those earning lower incomes perceived heightened risk. Most of the variation across Europe was explained by the Human Development Index. Risk perception regarding blood transfusions was lower in countries with higher Human Development Indices, that is countries with higher average education, life expectancy and Gross Domestic Product. CONCLUSION: This study provides new insights of how risk perception regarding blood transfusions is shaped within and across Europe. Both individual demographic factors and country characteristics play a role.

Blood donation practices and willingness to donate among residents of an urban slum in Lagos Nigeria.

AIM AND OBJECTIVES: This study was carried out to assess the blood donation practices and willingness to donate among residents of an urban slum. MATERIAL AND METHODS: Cross sectional descriptive study design with a qualitative and quantitative component. Multistage sampling was used to select 400 respondents for the questionnaire interview while three FGD sessions were conducted guide among three groups of participants namely youths, men and women. The information collected was analyzed manually (FGD) and with Epi info version 3.5.3. RESULTS: Majority of the questionnaire respondents were female, married, traders, had at least secondary school education, with mean age of 37.6 years. Only 12.0% had donated in the past, the main reason given by non donors was that they had never been asked to donate; this was also a key finding in the FGD. Willingness to donate was positively associated with being a male, single and Christian, age was a significant predictor of previous donation while more of the previous donors were still willing to donate, more for family/friends (p=0.036) than voluntarily (p=0.001) this view was supported by the participants at the FGD. CONCLUSION: Members of this urban slum had poor practice of blood donation,had positive attitude and were willing to donate, there is need to mobilise and organise outreach blood donation programs to convert attitude into actual practice.

Risk perception and its role in attitudes toward blood transfusion: a qualitative systematic review.

Despite improvements in blood safety making transfusion a much safer clinical procedure, the general public still perceives it as risky. We systematically reviewed available literature to examine evidence regarding the reasons and causes behind this perception. Electronic databases including PubMed, Cochrane Library, and EMBASE for literature dating back to the 1980s were searched. Eligible studies collected information on blood recipients' demographics, measures of risk domains (sets of values that risks encompass), and general knowledge of blood transfusion in terms of risks and benefits. Each study was assessed for quality of data, research method, and relevant findings. A scoring system was used to subjectively rate the overall quality of each study. Each study was reviewed for its method of data collection and information abstracted on hazards and conceptual dimensions used to measure risk. Risk perception between blood transfusion and other hazards including alternatives to transfusion were compared. Fifteen studies met the inclusion criteria, all of which were conducted outside the United States, with most of the studies published more than 10 years ago and conducted by only 3 research groups. Five studies were rated as being very good, four good, five fair, and one of poor quality. The finding of the studies consistently show that objective or raw knowledge is not correlated with risk perception, but subjective or calibrated knowledge is. Thus, it is what people think they know rather than what they actually do know that influences risk perception of transfusion. Of the 3 common conceptual domains-dread, unknown risk, and benefits-blood transfusion was found to be of intermediate dread, intermediate unknown risk, and most beneficial compared with other hazards. Donated blood was found to have lower perceived risk than all other alternatives to transfusion, except for use of autologous blood. There is a lack of recent studies on allogeneic transfusion. However, the more recent studies show that perceived high risk is still prevalent in the general public. The available risk perception studies suggest that although blood transfusion is safe, elevated risk perception of infections persists. Studies of the US population are needed to better understand the influence of both psychological and scientific factors.

Cancer patients' willingness to pay for blood transfusions at home: results from a contingent valuation study in a French cancer network.

Home blood transfusion may be an interesting alternative to hospital transfusion, especially when given with curative or palliative intent or for terminal care in advanced-stage cancer patients. However, there is limited information about patients' attitude toward this type of care. The purpose of this study was to measure French cancer patients' willingness to pay (WTP) for home blood transfusion and to analyze determinants of their choice. A contingent valuation survey was administered to 139 patients receiving transfusions in the framework of a regional home care network or in the hospital outpatient department. Participation was high (90%). Most patients (65%) had received home care, including 43% blood transfusions. Just under half of the patients gave a zero WTP, among which we identified 8 protest bidders. The median WTP for home blood transfusion was 26.5 per patient. In multivariate analysis, long home-hospital distance, poor quality of life, and previous experience of home care were identified as important factors in determining how much more patients would be willing to pay for transfusion at home. These results demonstrate the benefits of developing domiciliary services to improve patient well-being, notably for the weakest among them. The significant impact of previous home care experience on WTP is probably related to the strong involvement of physicians from the blood center and to their active contribution to a high-level homecare network. Some of our findings could be useful for policy decision-making regarding home care.

Psychosocial profile of people with AIDS and their caregivers in Egypt.

Caring for individuals with AIDS in developing countries represents a major crisis to families and natural caregivers. This study presents the psychosocial profiles of people with AIDS and their caregivers in Egypt to assess the effects of HIV/AIDS on patients, their caregivers, and the factors that influence caregiving and support. Various stressors and challenges for patients as well as hardships the caregiver faces were explored. The literature documents difficulties such as inadequate health care services, lack of resources, and stigma that patients experience in developing countries. Findings indicate an association between the psychosocial effects of AIDS on patients and their caregivers.

When a patient refuses life-saving care: issues raised when treating a Jehovah's Witness.

Patients who are Jehovah's Witnesses frequently cross the path of nephrologists when they are acutely ill in the intensive care unit and stable in the long-term setting. It is important that we as a group have a rudimentary understanding of their philosophy about blood transfusion so that we can be proactive in their management. We use a case as a launching point to discuss the origins of the faith and the decision to refuse blood, as well as potential therapeutic strategies that can be used to improve the care of these patients. Improvement in our understanding as physicians will facilitate a more productive conversation with our patients about a complex and emotional issue.

Community survey on blood donation practices in a northern state of Nigeria.

INTRODUCTION: Volunteer blood donors account for less than half of the blood supply in developing countries; and few countries have mobilized efforts to encourage voluntary blood donation (VBD). The objective of this study was to determine the knowledge and blood donation practices among adults in a state in Northern Nigeria. METHODS: Descriptive cross sectional study using multistage sampling technique was carried out among 936 respondents. Semi structured interviewer administered questionnaire was used to generate relevant data and information from the respondents. Data entry and analysis was done using EPI-info software package. RESULTS: The knowledge of the respondents on blood donation was low. Less than half 432 (46.2%) knew some indications for blood transfusion. Two hundred and twelve (22.6%) respondents had donated blood in the past but only 1% of these were VBD while 95% were donations based on blood needs by family members, relations and friends. Few respondents 112 (12%) had received blood transfusion in the past, and the main source of blood transfused was paid commercial donors 50 (44.6%). The fear of HIV screening was a major hindrance and limitation to voluntary blood donation among respondents. CONCLUSION: The gaps in knowledge & practice of VBD can be addressed through public awareness campaigns, and motivational programmes such as free medical services for voluntary blood donors.

The social rationale of the gift relationship.

This paper argues that, for Richard Titmuss, the rationale of the gift relationship (TGR) as a national blood policy is to reconcile liberty with social justice in the provision of an essential health resource. Underpinned by a needs-based distributive principle, TGR provides a social space for a plurality of values in which to engage with and motivate people to voluntarily give blood and other body materials as a common good. This understanding of TGR as a value pluralistic framework and its implications will be used to discuss the issue of using economic mechanisms to increase the supply of body materials or goods, including organs for transplantation. It is argued that, while TGR excludes a policy in which body goods are treated as private commodities and distributed primarily on the basis of achieving market efficiency, it is not in principle opposed to the use of material rewards, including financial ones, to motivate people to donate.

[Jehovah's Witnesses attitude towards hemocomponents and hemoderivatives]. / Testemunhas de jeová ante o uso de hemocomponentes e hemoderivados.

OBJECTIVE: To study extent of knowledge and acceptance of hemocomponents and hemoderivatives, fresh and stored, by Jehovah's Witnesses and also propose bioethical tools for any ethical and moral conflicts identified in their relationship with physicians and dentists. METHODS: A questionnaire was used to interview 150 Jehovah's Witnesses who attend "Salões do Reino" in the Distrito Federal, Brazil. The questionnaire was directed towards information on socio-demographic aspects related to the use (or not) of hemocomponents and hemoderivatives by those interviewed and also approach of healthcare professionals with patients of this belief. RESULTS: 74% believe that the use of blood causes more harm than benefits to health--refusal is essentially based on the Bible 96% do not support hemocomponents, but 76% support hemoderivatives in specific situations, showing that personal understandings do exist; 80% feel morally offended with use of stored blood and only 45% with fresh blood, confirming the religious interpretation that fresh products are in general more accepted; according to 83% of the interviewees dentists do not ask about patients' religion, whereas 71% of physicians do, showing little professional concern about this aspect. CONCLUSION: Jehovah's Witnesses are seen by their "moral outsiders" (here physicians and dentists) as the religious group that simply "does not use blood". Although, several blood treatments are nowadays permitted, it does not deprive them from a free conviction to refuse blood treatments. Their particular understandings frequently extend the list of blood prohibitions and, consequently, the number of moral conflicts, when considering that physicians and dentists usually do not ask about a patient's religion.

Testemunhas de jeová ante o uso de hemocomponentes e hemoderivados / Jehovah's Witnesses attitude towards hemocomponents and hemoderivatives

OBJETIVO: Estudar o grau de conhecimento e aceitação de hemocomponentes e hemoderivados, frescos e armazenados, pelas testemunhas de Jeová e propor ferramentas bioéticas para o enfrentamento de eventuais conflitos éticos e morais nas relações com médicos e dentistas. MÉTODOS: Aplicação de questionários a 150 testemunhas de Jeová que frequentam Salões do Reino no Distrito Federal, Brasil. Os questionários buscaram respostas a aspectos sociodemográficos relacionados à possível aceitação de hemocomponentes e hemoderivados pelos pesquisados, bem como a atitude dos profissionais de saúde ante à opção religiosa dos pacientes. RESULTADOS: Dos pesquisados: 74 por cento acreditam que usar sangue provoca mais malefícios do que benefícios à saúde (fundamentação essencialmente bíblica); 96 por cento não aceitam usar hemocomponentes, mas 76 por cento aceitam usar hemoderivados em situações específicas, demonstrando haver entendimentos particulares sobre o tema; 80 por cento se sentem moralmente ofendidos com o uso de sangue armazenado e apenas 45 por cento com sangue fresco, confirmando a interpretação religiosa de que produtos frescos são em geral mais aceitos; segundo 83 por cento dos pesquisados, seus dentistas não perguntaram a religião dos pacientes contra 71 por cento dos médicos, demonstrando pouca preocupação dos profissionais neste aspecto. CONCLUSÃO: As testemunhas de Jeová são vistas por seus "estranhos morais" (aqui, médicos e dentistas) como religiosos que simplesmente "não aceitam sangue". Todavia, diversos tratamentos sanguíneos são hoje aceitos, o que não impede, por livre convicção, a recusa no recebimento de qualquer deles. As interpretações particulares costumam ampliar o rol de proibições e de conflitos morais, já que médicos e dentistas, além de não considerar estas particularidades, também não perguntam a religião na anamnese.

OBJECTIVE: To study extent of knowledge and acceptance of hemocomponents and hemoderivatives, fresh and stored, by Jehovah's Witnesses and also propose bioethical tools for any ethical and moral conflicts identified in their relationship with physicians and dentists. METHODS: A questionnaire was used to interview 150 Jehovah's Witnesses who attend "Salões do Reino" in the Distrito Federal, Brazil. The questionnaire was directed towards information on socio-demographic aspects related to the use (or not ) of hemocomponents and hemoderivatives by those interviewed and also approach of healthcare professionals with patients of this belief. RESULTS: 74 percent believe that the use of blood causes more harm than benefits to health - refusal is essentially based on the Bible 96 percent do not support hemocomponents, but 76 percent support hemoderivatives in specific situations, showing that personal understandings do exist; 80 percent feel morally offended with use of stored blood and only 45 percent with fresh blood, confirming the religious interpretation that fresh products are in general more accepted; according to 83 percent of the interviewees dentists do not ask about patients' religion, whereas 71 percent of physicians do, showing little professional concern about this aspect. CONCLUSION: Jehovah's Witnesses are seen by their "moral outsiders" (here physicians and dentists) as the religious group that simply "does not use blood". Although, several blood treatments are nowadays permitted,. it does not deprive them from a free conviction to refuse blood treatments. Their particular understandings frequently extend the list of blood prohibitions and, consequently, the number of moral conflicts, when considering that physicians and dentists usually do not ask about a patient's religion.

Valuation of transfusion-free living in MDS: results of health utility interviews with patients.

BACKGROUND: This study measured how myelodysplastic syndrome (MDS) patients value transfusion independence (TI), reduced transfusions (RT) and transfusion-dependence (TD) using health utility assessment methodology. METHODS: 47 MDS patients were interviewed, US (n = 8), France (n = 9), Germany (n = 9) and the UK (n = 21), to elicit the utility value of TI, RT and TD. Health states were developed based on literature; patient forum discussions; and were validated by a hematologist. Face-to-face interviews used the feeling thermometer Visual Analogue Scale (VAS) and the Time Trade-Off (TTO) method to value the health states on a 0 (dead) to 1 (perfect health) scale. Socio-demographic, clinical, and quality-of-life (EQ-5D) characteristics were surveyed to describe the patient sample. RESULTS AND DISCUSSION: The mean age was 67 years (range: 29-83); 45% male, 70% retired; 40% had secondary/high school education, or higher (32%), and 79% lived with family, a partner or spouse, or friends. The mean time from MDS diagnosis was 5 years (range:1-23). Most patients (87%) received previous transfusions and 49% had received a transfusion in the last 3 months. Mean EQ-5D index score was 0.78; patients reported at least some problem with mobility (45%), usual activities (40%), pain/discomfort (47%), and anxiety/depression (34%). Few patients had difficulty understanding the VAS (n = 3) and TTO (n = 4) exercises. Utility scores for TI were higher than for RT (0.84 vs. 0.77; p < 0.001) or TD (0.84 vs. 0.60; p < 0.001). Three patients rated TD worse than dead. Corresponding VAS scale scores were 78 vs. 56; (p < 0.001), and 78 vs. 31 (p < 0.001), respectively. CONCLUSION: Patients value TI, suggesting an important role for new treatments aiming to achieve greater TI in MDS. These results can be used in preference-based health economic evaluation of new MDS treatments, such as in future cost-utility studies.

Reducing replacement donors in Sub-Saharan Africa: challenges and affordability.

In 1975, the World Health Assembly recommended that blood for transfusion should come from voluntary, non-remunerated donors; yet, in Africa, 75-80% of blood for transfusion still comes from hospital-based replacement donors. Although comprehensive economic data are scarce, evidence indicates that blood from voluntary donors recruited and screened at centralized transfusion centres, costs four to eight times as much as blood from a hospital-based, replacement donor system. Donor recruitment, quality assurance systems and distribution mechanisms in the centralized system are major reasons for the cost difference. There are concerns about the sustainability of centralized voluntary donor systems and their compatibility with the levels of health care that exist in many poor countries yet burdening patients' families with the responsibility of finding replacement blood donors will exacerbate poverty and reduce the safety of the blood supply. There are measures that can be introduced into hospital-based systems to improve safe blood supply in Africa but their effectiveness in different contexts needs to be evaluated.

Opinions about donating blood among those who never gave and those who stopped: a focus group assessment.

BACKGROUND: Understanding what prevents people from ever donating blood, or having donated, what influenced them to stop, are both equally important in devising recruitment strategies. Enlisting new donors and encouraging previous donors to return are vital to increasing collections. STUDY DESIGN AND METHODS: Six racially homogeneous focus groups of never donors and lapsed donors were conducted. Both sexes and a range of age groups were represented. The importance of blood donation as a volunteer activity, deterrents, motivations, awareness of need, and effective recruitment messages were topics discussed. RESULTS: Never donors do not see blood donation as an important volunteer activity on par with others like volunteering at hospitals, schools, and support groups. Fear and inconvenience were major barriers to donating. Better education campaigns to allay fears about donating and workplace drives were considered important motivators. Participants were unaware of the need for blood. Media messages that combine safety of the process along with who it benefits were considered most effective. Messages that target the specific needs of minority communities were considered good motivators for their recruitment. CONCLUSION: Blood collection agencies should increase awareness that blood donation is a worthwhile and important volunteer activity. Another strategy would be to capitalize on the existing perception that donating blood is like donating money or used clothing, by focusing on the concept of giving something tangible. Along with providing convenient opportunities to donate, blood centers need to effectively convey the need for blood and allay fears about the donation process to increase the current donor pool.