Understanding donors' motivations: a study of unrelated bone marrow donors

Medical advances in bone marrow transplantation techniques and immunosuppressive medications have dramatically increased the number of such transplants performed each year, and consequently, the demand for bone marrow from unrelated donors. Although physiological aspects of bone marrow donation have been thoroughly investigated, very few studies have examined psychosocial factors that may impact individuals' donation decisions and outcomes. To examine one particular set of donor psychosocial issues, this study investigated motives for bone marrow donation among 343 unrelated bone marrow donors who donated through the National Marrow Donor Program. Six distinct types of donor motives were identified from open-ended questionnaire responses. Donors most frequently reported motives reflecting some awareness of both the costs (to themselves) and potential benefits (to themselves and the recipient) of donation. A desire to act in accordance with social or religious precepts, expected positive feelings about donating, empathy for the recipient, and the simple desire to help another person were also commonly cited reasons for donating. Among a series of donor background characteristics, donors' gender was the variable most strongly associated with motive type; women were most likely to cite expected positive feelings, empathy, and the desire to help someone. Central study findings indicated that donor motives predicted donors reactions to donation even after the effects of donor background characteristics (including gender) were controlled. Donors who reported exchange motives (weighing costs and benefits) and donors who reported simple (or idealized) helping motives experienced the donation as less positive in terms of higher predonation ambivalence and negative postdonation psychological reactions than did remaining donors. Donors who reported positive feeling and empathy motives had the most positive donation reactions in terms of lower ambivalence, and feeling like better persons postdonation. These finding add substantially to the body of work concerning medical volunteerism generally, and also have important practical implications for the recruitment and education of potential bone marrow donors.     

Real-time X-ray diffraction study at different scan rates of phase transitions for dipalmitoylphosphatidylcholine in KSCN

A questionnaire survey was carried out to examine the attitudes and practices of Australian and New Zealand intensivists with regard to brain death and organ donation. A return rate of 82.5% was achieved. Fifty-eight per cent had written evidence of their own wishes to donate organs and 94% would agree to donation from a dependent. At least one intensivist is involved in certifying brain death on 95% of occasions. Intensivists are involved in the request for organ donation over 90% of the time although one-third do not believe that it is their role to request organ donation. Although two-thirds believe that the family should always be approached for organ donation, another 52 out of 254 indicated that it was their (the intensivist's) role to decide if families should be asked for organ donation. Possible reasons for not requesting are language or other communication problems, perceptions of cultural differences and degrees of family distress. Twenty per cent of respondents do not provide haemodynamic support before brain death confirmation. Australian and New Zealand intensivists overwhelmingly support the concept of brain death, current methods of confirmation of brain death, organ donation and transplantation. Possible reasons behind loss of potential donors include decisions not to resuscitate both before and after brain death is confirmed. Perceptions of family grief and cultural differences clearly inhibit requests for organ donation. A very few units have an effective policy on approaching families about organ donation. Intensivists have almost exclusive control over requests for organ donation and thus bear a full professional responsibility for this element of hospital practice.     

Egg-sharing in assisted conception: ethical and practical considerations

The present acute shortage of eggs for donation cannot be overcome unless adequate guidelines are set to alleviate the anxieties regarding payments, in cash or kind, to donors. The current Human Fertilisation and Embryology Authority (HFEA) guidelines do not allow direct payment to donors but accept the provision of lower cost or free in vitro fertilization (IVF) treatment to women in recognition of oocyte donation to anonymous recipients. Egg-sharing achieved in this way enables two infertile couples to benefit from a single surgical procedure. However, the practical guidelines related to this approach are ill-defined at the present time leading to some justifiable uncertainty. A pilot study was therefore undertaken in order to establish the place of egg-sharing in an assisted conception programme. The current HFEA guidelines on medical screening of patients, counselling, age and rigid anonymity between the donor and recipient were followed. The study involved 55 women (25 donors and 30 recipients) in 73 treatment cycles involving fresh and frozen-thawed embryos. Donors were previous IVF patients who, regardless of their ability to pay, shared their eggs equally with matched anonymous recipients. They paid only for their consultations and tests right up to the point of being matched with a recipient. The sole recipient paid the cost applicable in egg donation of a single egg collection, although both received embryo transfers. The results indicate that although the recipients were older than the donors (41.4 +/- 0.9 versus 31.6 +/- 0.5 years), and there was no difference in the mean number of eggs allocated, the percentage fertilization rates, or the mean number of embryos transferred, there were more births per patient amongst recipients than amongst donors (30 versus 20%). We conclude that providing the donors are selected carefully, this scheme whereby a sub-fertile donor helps a sub-fertile recipient is a very constructive way of solving the problem of the shortage of eggs for donation. There are also the advantages of including a group of women who would otherwise be denied treatment. Problems related to 'patient coercion' can, in our view, be fully overcome by the application of strict common-sense safeguards. The ideal of pure altruism is not without its medical and moral risk. The success of egg-sharing depends on shared interests and a degree of altruism between the donor, the recipient and the centre. The current HFEA guidelines should be applauded for enabling a highly effective concept of mutual help to develop.     

Psychosocial effects of unrelated bone marrow donation: experiences of the National Marrow Donor Program

In this study, we investigated the psychosocial effects of unrelated marrow donation. Survey questionnaires were administered pre-donation, shortly post-donation, and 1 year post-donation to all donors through the National Marrow Donor Program over a 3-year period. Univariate, bivariate, and multivariate analyses were then performed. Donors were generally quite positive about the donation 1 year post-donation: 87% felt it was "very worthwhile" and 91% would be willing to donate again in the future. Marrow donors were more likely than kidney donors to feel better about themselves as a result of the donation (P < .001). Donors with longer collection times, in general, had less positive psychosocial outcomes from the donation. Donors who experienced lower back pain or difficulty walking as a result of the donation were more likely to experience the donation as more stressful and painful than expected, but no more likely to experience it as less positive emotionally than donors who did not experience these side effects.     

An oocyte donation program with goserelin down-regulation of voluntary donors

BACKGROUND: In ovum donation programs oocytes can be requested from infertile women going through an in vitro fertilization cycle. Currently, when embryos can be cryopreserved, these donors have virtually disappeared. Instead, most donors have been healthy fertile volunteers willing to go through an IVF attempt solely for the purpose of donating all oocytes. METHODS: Sixty-four patients had 93 started cycles of oocyte donation from 59 donors. Twenty recipients had primary ovarian failure, 24 had secondary ovarian failure, 15 had had repeated failures in earlier IVF attempts and five were carriers of genetic diseases. The donors were 51 healthy volunteers recruited through the press. Eight patients from an IVF program donated excess oocytes. Donors were not paid and their mean age was 30 years. To minimize discomfort of the treatment, a long-acting GnRH-agonist, goserelin, was used for down-regulation. RESULTS: The pregnancy rate per transfer with fresh embryos was 28.4% (23/81) and with frozen-thawed embryos, 17% (3/18). Twenty-one healthy infants have been born including one set of triplets and three sets of twins. Nine pregnancies ended in abortion and one in intrauterine fetal death. The most common complications of pregnancy were pre-eclampsia and pregnancy-induced hypertension (41.2%, 7/17). Ten of 17 patients delivered by cesarean section (58.8%). CONCLUSION: It was possible, through the press, to obtain highly motivated oocyte donors, who go through IVF treatment solely for altruistic reasons. Oocyte recipients appear to have many complications in their pregnancies. Until more data are available, these patients need a high standard of obstetric care.     

Views of hospital staff on the management of hypertension

A questionnaire concerning the detection and management of hypertension was presented to 265 hospital doctors, 114 medical students and 59 student nurses. Of these 75% were completed. Although only 76% thought that routine measurement was necessary in outpatients, 92% of respondents thought that blood pressure (BP) should be measured routinely in all in-patients. A total of 17% of all doctors and 11% of physicians indicated that they would not use drug treatment until the diastolic BP exceeded 105 mmHg. Thirty-four per cent of respondents still use diastolic phase IV and 84% felt that BP should be measured 2-4 times before deciding on treatment but the posture of the patient (lying, sitting or standing) during recording was inconsistent. Seventy-seven per cent of respondents indicated that they recorded BP to the nearest 5 mmHg and 4% to the nearest 10 mmHg. Despite the literature on the subject, there are still widely differing opinions amongst medical staff on how to record BP and at what level it should be treated.     

The effects of applied tension on symptoms in french-speaking blood donors: A randomized trial.

Blood-donation-related symptoms such as dizziness and weakness discourage people from participating in this important health-related activity. Four hundred sixty-seven young adult, French-speaking blood donors were randomly assigned to (a) a condition in which they learned a possible preventive technique called applied tension and were asked to practice it from the time they got on the donation chair until they were just about to get up, (b) a placebo condition in which they learned applied tension and were asked to practice it from the time they got on the chair until the insertion of the donation needle, or (c) a no-treatment control condition. Donors assigned to the treatment condition reported significantly fewer blood-donation-related symptoms than did donors assigned to the other conditions and rated their likelihood of returning to give blood again as greater than did those in the no treatment condition. Among donors whose chairs were not reclined, participants in the treatment condition had significantly smaller heart rate reactions to blood donation than did those in the other conditions. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Living-related organ donation: the donor's dilemma

New procedures for segmented organ transplantation of the lung and liver have again brought to public attention the issue of live organ donation. To provide a context for understanding the dilemmas faced by potential donors, the body of literature over the last 40 years regarding living-related organ donation with kidneys was reviewed. Results indicated that while psychological side effects have been reported including depression and family conflict these risks are generally under-emphasized. Risk factors for negative psychological consequences include high age, lack of social support, and organ rejection in the recipient. Instantaneous decision-making in favor of donation is generally described. However, researchers have neglected to consider social desirability factors when assessing donor motives. Furthermore, lack of awareness has been shown concerning the coercive processes involved in moral decision-making. Health professionals should be aware that merely raising the issue of live organ donation may instigate powerful psychological processes beyond the potential donor's voluntary control and leave little room for refusal without psychological cost. Implications for treatment are discussed with these circumstances in mind.     

Public understanding of medical screening

AIM: To estimate the extent of public understanding of mass screening for disease and of the benefits and limitations of screening. METHODS: Telephone interviews were conducted with a national sample of 835 Australians. RESULTS: Of total respondents, 68% claimed to have heard of screening tests, but only 21% correctly understood that screening tests are for asymptomatic people. This understanding was related to education. The most frequently named tests were mammography (51%) and Pap tests (33%), and for all age groups these were mentioned by more women than men. Around 27% of respondents thought that the Pap test would detect 95% or more of case, 45% thought the test would detect 90% or more, while 60% of respondents thought the test would detect 80% or more of cases. Around 29% of respondents thought that mammography would detect 95% or more of cases, 49% thought the test would detect 90% or more, while 65% of respondents thought the test would detect 80% or more of cases. Of all respondents, 33% favoured compensation when cases were "missed" by screening provided people were warned beforehand, 58% were not in favour, and 9% were unsure. CONCLUSIONS: There are misconceptions among the public concerning the purpose of screening and the accuracy of screening tests. However, most people accept that some cases of disease will be missed by screening and that if people are adequately informed beforehand compensation should not automatically follow for those whose disease is missed.     

Breast neoplasms: information in question(s). A survey of patients and physicians at a cancer treatment center

OBJECTIVE: The aim of this study was to know the wishes of our patients for information and to compare them with the point of view of our colleagues in a cancer center. METHODS: We gave 100 consecutive new patients with breast cancer a questionnaire about their needs. The same questionnaire was given in duplicate to all our colleagues in the cancer center (n = 53) asking: 1) their own needs of information if they had breast cancer 2) how they thought the patients would answer. RESULTS: Seventy-five percent of the patients and 81% of the doctors returned the questionnaire (28 were men and 15 women; 81% were involved in the management of breast cancer). On one hand, concerning information about the disease and about the treatment, there was no difference between the needs expressed by patients of doctors (as patients). As expected, the two groups wanted to be well informed. On the other hand, there was always a statistically significant difference between the needs expressed by patients and the opinion of doctors who systematically underestimated them. Concerning information to the family, 21% of doctors and only 4% of patients didn't want any information to be given to their family. Interestingly, 67% of the patients thought the decision had to be taken together with the doctor and 56% of the doctors (as patients) wished the decision to be taken by the doctor. CONCLUSION: Patients and physicians if they were patients, expressed the same high level need of information, but the patients needs seemed underestimated by the majority of doctors.     

Umbilical cord blood transplantation: acceptance of umbilical cord blood donation by pregnant patients

BACKGROUND/OBJECTIVE: Umbilical cord blood is an alternative source for allogeneic transplantation of hematopoietic stem cells from related and unrelated donors. It can easily be collected, cryopreserved and stored in cord blood banks for later use. In Switzerland, cord blood banks for related and unrelated stem cell transplantation are being established. The aim of the study was to evaluate previous knowledge of the possible medical use of cord blood and acceptance of cord blood banking in pregnant women. METHODS: We performed a prospective open study using a structured, anonymous questionnaire at the University of Basel Women's Hospital pregnancy outpatient clinic. After concise information on the use of cord blood for transplantation, questions were asked concerning previous knowledge of the use of placenta and cord blood in general, concerning the attitude to donation of cord blood for transplantation, and the respondent's willingness to donate cord blood of her own child. Women of different ethnic background were compared. RESULTS: From 300 questionnaires handed out to pregnant women of different ethnic background attending our outpatient clinic, 250 (83%) were returned, and 245 could be evaluated for final analysis. Only 40% indicated that they did know what usually happens to the placenta after birth. In contrast, the vast majority (95%) supported the idea of umbilical cord blood for banking and later use for stem cell transplantation. Similarly, 93% stated that they would agree to donate the cord blood from their own child for this purpose, while no statistically significant differences could be identified either between women with or without previous knowledge or of different ethnic background. CONCLUSIONS: This study shows the high acceptance of umbilical cord blood donation for banking and stem cell transplantation purposes in pregnant women, irrespective of previous knowledge. As there are no major differences between women of different ethnic background, a high degree of diversity of HLA-types of donated cord blood samples can be expected and may offset the underrepresentation of ethnic minorities in bone marrow donor registries.     

Organs for transplantation. The demand increases--but not the supply

The supply of organs is the only factor which limits the scope of transplantation to help the severely ill. As the number of donors can not be appreciably increased, the functional and medical criteria for donors are reduced instead. Although the already positive attitude of the public to cadaveric organ donation is unlikely to improve further, intensified information campaigns might result in more people discussing organ donation with their relatives and informing them of their views, which would help surviving relatives to decide for or against organ donation. It should also be possible to improve access to organs by educating health care personnel.     

Brain metastasis model in athymic nude mice using a novel MUC1-secreting human breast-cancer cell line, MA11

OBJECTIVES: This study explored parental attitudes about their interactions with their children's providers when decision making involved critical life situations. We evaluated parents' attitudes regarding the following questions: What was the parents' understanding of their children's health care issues, and what was the parental perception of the professionals' understanding of their children and of themselves? Who should be the principal decision makers for the children? What was the parents' knowledge about advance directives? Did parents want to participate in a process of advance planning to assist with critical life decision making for their children? METHODS: We surveyed all parents attending a conference sponsored by the Massachusetts Department of Public Health for parents of children with special needs. The questionnaire was provided to all parents attending the conference. An announcement was made at the conference requesting parental participation. The 76 respondents constitute a convenience sample of parents of children with special needs sufficient for this preliminary stage of investigation. RESULTS: Of 177 parents attending the conference, 76 (43%) completed the questionnaire. Eighty-eight percent of the participants strongly agreed that they understood their children's conditions. Twenty-one percent stated that they had sufficient understanding of their children's future medical needs, and 21% thought that they had a sufficient understanding of their children's developmental potential. Ninety-nine percent of parents strongly agreed that physicians should share information with parents no matter how serious or potentially upsetting. Ninety-four percent of those parents who thought that their children's physicians understood their own needs also thought that the physicians understood their children's needs. In contrast, only half (55%) of those parents who thought the physicians did not understand their needs thought the physicians understood their children's needs. Ninety-two percent of parents who thought that the physicians understood their needs agreed that the physicians would make the best decisions in crises versus 60% of those who did not think the physicians understood their needs. Seventy-four percent stated that they would consider written guidelines for their children that dealt with critical life situations. All parents who thought their children's conditions were not understood wanted written guidelines. Of those parents who had thought their children would not survive (15 parents), 94% wanted written guidelines. All seven parents who had been told their children would not survive wanted written guidelines. CONCLUSIONS: Parents in this study were generally satisfied with care being provided to their children. Nevertheless, the results clearly suggest goals that could lead to improved capacity for parents and providers to make critical life decisions for and with children. First, physicians must understand the needs of parents to be able to make decisions that would be in the children's best interests. Second, parents should participate fully in critical life decisions for their children and should use written guidelines to assist with the process of these critical life decisions. Our findings strongly support the development of a longitudinal process, initiated early after the onset or discovery of illness and maintained longitudinally throughout the course of a child's illness, to help parents and providers work together in this vital area of health care to children.     

Porphyrobacter tepidarius sp. nov., a moderately thermophilic aerobic photosynthetic bacterium isolated from a hot spring

BACKGROUND: The epidemic of Human Immunodeficiency Virus (HIV) infection led blood banks to initiate donation deferral criteria based on self-reported risk factors. However little information is available on the differences in reporting risk factors before and after HIV status is known. METHODS: Between April and July 1994, blood donors in a provincial hospital in northern. Thailand were interviewed at the time of donation, about their demographic characteristics and risk factors. All donors had agreed to learn their test results and were called back for post-test counselling and reinterview. RESULTS: HIV-positive blood donors were more likely to change from 'denying' to 'acknowledging' risk factors while HIV-negatives were more likely to change from 'acknowledging' to 'denying'. The differences between risk factors obtained before and after test results were known resulted in stronger, weaker or even opposite risk measures. CONCLUSION: The study results raise questions about the impact of the differences in reporting HIV-related risk factors by the donors on how effective donation deferral criteria can be developed.     

Expectations of recipient couples awaiting an anonymous oocyte donor match

PURPOSE: Our purpose was to survey recipients in an ovum donation program and report on their expectations while waiting for their potential donor recipient match. METHODS: Accepted or rejected anonymous ovum donor matches (n = 80) from January 1996 to May 1997 were evaluated. Patients generated a "wish list" of desired traits and physical characteristics. From an approved donor pool of medically and psychologically screened women, candidates were drawn upon as potential matches and presented to the potential recipient, who decided whether to accept the donor. Reasons for accepting or rejecting the donor were tallied and were compared to the patient's wish list. RESULTS: Medical history and race were ranked by 33 and 23% of recipient couples as the two most important characteristics, while 74 and 54% stated that these were among the three most important factors in a potential donor compared with other traits. Fifty-seven (71%) recipients accepted, while 23 (29%) rejected, the first donor presented to them. Eleven were subsequently given a second choice within 6 months, with 10 (91%) accepting the next presented match. Recipients waiting for a donor were just as likely to accept or reject a potential candidate whether waiting < 3 months (33%; 15/46), 3-6 months (25%; 4/16), or > 6 months (22%; 4/18) (P > 0.05; NS). In all but five recipients, the reason for rejection was consistent with their top three priorities reported in their wish list. CONCLUSIONS: Phenotypic, ethnic, educational, and other interests are important in the selection of an ovum donor. Recipients are proactive in their decision process, making educated and well considered decisions in spite of the limited pool and the extended time frame in waiting for an appropriate ovum donor.     

Information in the ICU: are we being honest with our patients? The results of a European questionnaire

BACKGROUND: We were interested in determining the current practices and views of European intensive care doctors regarding communication with patients and informed consent for interventions. METHODS: A questionnaire was sent to the 1272 western European doctor members of the European Society of Intensive Care Medicine. All questionnaires were anonymous. Five hundred four completed questionnaires from 16 western European countries were analyzed. RESULTS: Of the respondents, 25 % said they would always give complete information to a patient, although 35 % felt they should. Thirty-two percent would give complete details of an iatrogenic incident, but 70% felt they should. There were significant differences in these attitudes between doctors from different countries, with doctors from the Netherlands more likely to give complete information, and doctors from Greece, Spain and Italy less likely. Fifty percent of the respondents required written consent for surgery, but for insertion of an arterial catheter oral consent was more widely accepted. The Netherlands and Scandinavia generally accepted oral requests for procedures, while Germany and the United Kingdom preferred written requests. Doctors of all countries were generally happy with their current practice concerning informed consent. Seventy-five percent would accept the right of a patient to refuse treatment, but 19% would carry out the procedure against the patient's wishes. CONCLUSIONS: Doctors are often not completely honest with their patients regarding their diagnosis or prognosis, or in the event of an iatrogenic incident. However, most doctors will respect a patient's right to refuse treatment. Informed consent practices vary substantially and are largely determined by locally accepted policy and accepted by doctors working in those areas.     

Pediatricians' knowledge and attitudes concerning diagnosis and treatment of attention deficit and hyperactivity disorders. A national survey approach

OBJECTIVE: To examine pediatricians' knowledge and attitudes concerning the diagnosis and treatment of attention deficit disorder (ADD) and attention-deficit hyperactivity disorders (ADHD). DESIGN: Cross-sectional survey. SETTING: United States. PARTICIPANTS: Three hundred eighty pediatricians comprising respondents from a random sample of 1000 members of the American Academy of Pediatrics. INTERVENTIONS: None. MEASUREMENTS/MAIN RESULTS: Pediatricians' perceptions of diagnostic modalities, child and family communication concerning ADD and ADHD diagnosis and treatment, and a variety of treatment issues were assessed in this study. Findings indicate that methylphenidate (Ritalin) hydrochloride is the most prescribed medication for treatment of ADD and ADHD. Pediatricians reported common parent and child misperceptions about ADD and ADHD treatment. Results suggest a wide range of reported physician behavior with respect to the diagnosis and treatment of ADD and ADHD. CONCLUSION: Greater attention could be paid to providing accurate information in medical and educator training with respect to the cause, diagnosis, and treatment of ADD and ADHD.     

A Canadian survey of cancer patients' experiences: are their needs being met?

Cancer patients (n = 913) who received treatment within the previous 2 years were interviewed to quantify reports of symptoms associated with cancer, measure the impact of symptoms on lifestyles, document experiences with accessing information and treatment for cancer and its symptoms, and record attitudes about the level of care received. Cancer patients were primarily recruited through newspaper ads placed throughout Canada and asked to complete a self-report questionnaire. Patients called a toll-free number and were interviewed to ensure eligibility. Most respondents were female (66%) with breast cancer (64%). Prostate cancer (40%) was the most common diagnosis among males. Almost all respondents (94%) reported experiencing one or more symptoms. Fatigue and anxiety were the most frequently reported symptoms (78% and 77%, respectively). Fatigue was most likely to be self-rated as moderate to severe and was most likely to interfere in normal daily activities. Respondents who experienced fatigue reported a more frequent use of healthcare services (including complementary therapies) than those who did not experience fatigue. Half of the respondents reported trying to find information on fatigue, but only half of these said they had obtained information. The most helpful sources of information were nurses, specialists, and other cancer patients. Respondents were more likely to be dissatisfied with their treatments for their symptoms than for their cancer. This survey indicates that most cancer patients experience symptoms related to the disease and its treatment. The most prevalent symptoms are fatigue and anxiety; fatigue is the most debilitating.     

Familial hypercholesterolaemia: a pilot study of parents' and children's concerns

OBJECTIVE: To assess psychosocial concerns of families with familial hypercholesterolaemia. METHODS: One-hundred-and-fifty-four single or pairs of parents of children age 6 - 16 years responded to a specifically designed questionnaire. One child from each family was interviewed. RESULTS: Eleven percent of parents thought that their quality of life would have been better had they not known about the disease. None agreed totally that they wished the diagnosis had not been made. However, 20% reported familial conflicts and 8% that their child's emotional or social life had been adversely affected. Conflicts and adverse effects were associated with higher scores on the Child Behaviour Checklist (CBCL). Among the children, worry about cardiovascular disease (affirmed by 22%) was related to male sex and CBCL score. RELEVANCE: Most families do not indicate that they have experienced psychosocial problems due to familial hypercholesterolaemia. Parental ratings of the child's behavioural adjustment may identify vulnerable children.