Background
Methods
Aim
Methodology
Literature search
Inclusion and exclusion criteria
Data evaluation
Data analysis
Findings
No. | Author/Year | Aim | Country Setting | Sample Inclusion | Design | Findings | Limitations |
---|---|---|---|---|---|---|---|
1 | Mathevic & Erjavec (2016) | To investigate awareness, level of knowledge, attitudes and information sources of pregnant women and hospital maternity staff about cord blood banking. | Croatia 2 Maternity OPD | 960 women 96% response rate | Quantitative Questionnaire | Overall: Preference of voluntary donation. One-third opted for private donation. 50% pregnant women who were not planning on CCB this pregnancy most often stated insufficient knowledge and too much paperwork
Knowledge and awareness:
Increases with age, education level and pregnancy duration. Majority unaware of practical information. Information sources: Media main source; 6% from Obs; nil from other HPs | Strength: Large sample size in two hospitals partly representative of city population. Weakness: Participant demographics representative of urban not general population, although UCB mainly performed in urban populations Validation of tool not disclosed |
2 | Matsumoto et al. (2016) | To investigate public opinion and knowledge about cord blood banking in Jordon. | Jordon 6 Maternity Hospitals (4 Private, 2 Public) Maternity OPD | 899 women 100% return rate Convenience sample | Quantitative Questionnaire: multi choice, Likert-scale, and coded short answer format. Tool developed and administered by authors. | Overall: Positive public opinion about CBB. Most wanted more information on CBB, especially from Obs.
Knowledge & awareness
*69% reported low knowledge of CBB & transplant *77% reported low knowledge of CBD *Higher education & household income = more likely to hear/discuss CBB with Obs. *Only 7% heard about CBB from Obs
Attitudes and opinions
*CBD supported more than CBB; Higher likelihood of CBB if presented with future potential or recommended by Obs *Women with prior knowledge about CB transplants found it ethical /more willing to do CDB
Preference and information
*66% want more CBB information *71% Obs preferred information source | Refusal rate not recorded Not all questions answered fully |
3 | Kim et al. (2015) | To assess the knowledge & attitude of early post-partum women in Korea with regard to storage, donation & disposal of CB, & to identify factors influencing CB donation. | Korea 3 metropolitan maternity hospitals | 320 early post-partum women who had stored (n = 109), donated (n = 34), discarded (n = 177) their cord blood. Convenience Sample | Quantitative 2 Questionnaires, yes/no answer format for knowledge assessment; 4 point scale for attitude format. Tools adapted from 2 previous studies Kim et al. (2009) and Lee (2006) | Overall: CBD decided earlier than CBB. Mass media most influential factor for CBD Reasons for CBB/CBD *93% CBB - as insurance for baby. *73% CBD - due to unlimited uses of CB Knowledge and Attitude of CB use *Higher knowledge and positive attitude towards CBB & CBD increased likelihood of CBD
CB Education
*Women who used CBD were encouraged by media *44.2% who CBB and 12% who CBD were educated HP | Lacked thorough examination on delivery of CB education Some participants believed they were educated on CBB by HP but they were CBB employees working in the hospitals |
4 | Bioinformant (2014) | To determine the factors involved in expectant parents’ decision to privately store, publicly donate or discard their infant’s cord blood. | International: Australia, NZ, Asia, Europe, USA, Canada, Middle East, Sth America, Mexico, Central America, Caribbean, Africa | 603 Expectant parents and recent parents (within 3 years) Sample method unsure | Quantitative Survey Questionnaire Branched survey. Specific questions asked of different respondent populations. | Overall: Most study participants had not been informed of CBB options by their antenatal health care professional. Source of CB banking information: Obs (35%), Family & friends (35%), ANC (14%). 45%: Information from CBB was influential in their decision. 30%: Obs significantly influential in parent decision. 77%: did not CBB as unaware of option. 62%: Obs did not mention CBB. 63%: ANC did not mention cord blood banking. | Analytical strategy was not described |
5 | Jordens et al. (2014) | To explore awareness and understanding of cord blood banking among Australian women, and the effect of education of planned choices on the disposal of cord blood. | Australia, NSW 14 public and private antenatal clinics and classes in maternity hospitals in metropolitan (n = 8), regional (n = 4) and rural (n = 2) [included 3 hospitals that facilitate CB donation] | 1873 Pregnant women (> 24 wks gestation, low risk) Target n = 2050 Response rate = 87% Purposive Sampling | Quantitative Self -administered Questionnaire: multi-choiceformat. (modified version of Fernandez et al., 2003) | Overall: Most women wanted information from ANC provider Many respondents were aware of CBB. CBB education increased intention to CBB / CBD Awareness *71% indicated awareness of CBB; more likely to know of CBB vs CBD Source of CB banking information*Hospital print information (43%); print media (22%); ANC (21%), TV / radio (19%), family/relatives (17%)
Decisions about CBB
*After receiving CBB basic information, proportion who indicated they would CBB or CBD increased from 30 to 68%. CBB preferences and beliefs *Only 13% had been asked about CBB or CBD prior to commencing survey. *93%: CBB and CBD information during pregnancy should be given by ANC giver. | Only 1 State of Australia sampled; not representative of national population Awareness, not knowledge was reported |
6 | Alexander et al. (2014) | To determine awareness of CB donation and banking among pregnant women. | Nigeria 1 tertiary university teaching hospital, ANC | 302 Pregnant women Convenience sampling | Quantitative Structured Questionnaires | Overall: Awareness of CBD and CBB among pregnant women is low, with media the main source of information.
Awareness
*Only 19% aware of CB due to the absence of CBB and CBD in Nigeria.
Information sources
*Hospitals (30%); Media (39%), Friends (24%), Internet (7%) | CBB and CBD not available in the Country so may contribute to low awareness. |
7 | Karagiorgou et al. (2014) | To analyse the attitudes and knowledge of Greek citizens with high reproductive capacity (aged 18–24 years) about cord blood banking and therapies. | Greece 5 Greek cities, 2 Greek island communities. | 1019 Public citizens; 292 parents Response rate = 100% of approached target population Random Sampling | Quantitative Standard anonymous multi-choice questionnaires | Findings from parents only reported here Overall: High CBB awareness level, with almost half informed by a HP Knowledge and attitudes about CBB *80% knew of CBB; 83% aware of CB uses; 87% positive about CBB Information quality *48% stated main source of CBB information, 43% of CB use information came from HP. Future attitudes *53% preferred CBD vs 47% preferred CBB for future use. | Focused on general population of childbearing age. Did not clearly represent pregnant women or expectant couples. Awareness not knowledge reported. |
8 | Vijayalakshmi, (2013) | To assess antenatal mothers’ knowledge regarding cord blood collection and storage. To find an association between knowledge and demographics on cord blood collection and storage. | India 1 regional hospital’s ANC | 100 Antenatal mothers Non-probability Purposive sampling | Quantitative Questionnaires | Overall: 95% had poor knowledge of CBB and collection. *Significant association between knowledge scores and demographics (live birth, abortion, death, place of residence, type of family and membership to any organization) was found *Age, religion, gravida, para, education, occupation, income, newspaper and magazine subscription showed no correlation with knowledge score | Minimal information on knowledge questions asked Minimal analysis of findings presented Survey tool not validated |
9 | Meissner-Roloff & Pepper (2013) | To assess the extent of public support for the establishment of a public cord blood bank. | South Africa 1 urban university hospital, ANC | 217 Mothers Convenience sampling | Mixed methods Qualitative Interview and education Quantitative Anonymous Questionnaires Survey tools validated | Overall: Study revealed positive support for a public CB bank in South Africa Willingness to donate placenta and CB *80% supported placental donation, while 2.5% unwilling to donate placenta would do CBD *78% supported a public bank; 78% willing to have HIV testing for CBD process Knowledge of CB stem cells *70% unaware of stem cells prior to education session; 94% opinion that stem cells could treat blood disorders Influence of Age *Younger women more willing to donate placentas than older women (84% v 77%), more likely support CBD (92% v 82%) | Centre specialized in high risk pregnancies; participants may have had better access to, and received more, information than rest of population attending other clinics |
10 | Padmavathi (2013) | To assess stem cell and CB banking knowledge among antenatal mothers before and after a structured teaching program. To assess the effectiveness of structured teaching program on cord blood banking and stem cell knowledge among antenatal mothers. | India 1 district maternity hospital, ANC | 30 Antenatal mothers Purposive sampling | Qualitative Structured interviews pre and post education Post education interviews attended 7 days following education | Overall: Results suggest a structured teaching program was effective and increased ANC mothers’ knowledge on stem cells and CB. Pre-test Knowledge *57% had poor knowledge; 43% had average knowledge. Post-test knowledge *70% had good knowledge; 30% had average knowledge. *Mean post-test knowledge higher (21.9%) then pre-test knowledge (10.2%). | Unclear of education content in teaching session and how knowledge was assessed Unclear if same interview questions used pre and post education. |
11 | Screnci et al. (2012) | To explore knowledge about CB stem cells, and preferences for donation or private banking and the motivation behind the decision. | Italy University of Rome, ANC | 239 pregnant women before CB education given Surveys distributed n = 300 Response rate = 80% [298 female blood donors] Convenience Sampling 100 mothers who had donated CB (for verification of donation motivation) | Quantitative Anonymous Questionnaires | Findings reported for pregnant women only. Overall: Large support for CBD suggests CBB is not an obstacle to expansion of CBD. HP and institutions should provide CBB information.
Knowledge of CB
*93% general knowledge; 42% probability of clinical use; 31% therapeutic uses; 58% difference CBD Vs CBB; 71% donation criteria
CBD awareness
*95% aware of CBD
Information source
*42% Obs; 25% internet CB choice (n = 215) *61% would CBD, 56% had altruistic and other reasons; *7% would CBB, 73% would do so to safeguard future *32% would discard CB, logistics (28%), lack of interest (28%) | Sample from one Institution only so may not be generalised Survey tool not validated |
12 | Shin et al. (2011) | To investigate the knowledge of CB and attitudes towards CB banking among well educated, high-potential donors. | Korea 1 Maternity hospital | 863 pregnant women attending antenatal classes which did not consist of CB banking education component Convenience sampling Surveys distributed = 1430 Response = 60.3% | Quantitative Questionnaires Questionnaire adapted and enhanced from 3 previous studies (Fernandez et al. 2003,Perlow et al. 2006, Fox et al. 2007) | Overall: Minimal level of knowledge was recorded. Obs have insignificant role in disseminating knowledge Knowledge 57% correctly answered CB current use and limitations
CB collection reason
*CBD: Altruism most common reason (94%) *Safeguard for future was most common reason for CBB (75%) *Most common reason for no CB collection was inconvenience of consent and medical questionnaire
CB Donation motivation
*54% of CBD were blood donors
Source of information
*88% received CBD information; most common sources CBD of information was media/internet (37%) and brochures (31%). * 2% and 4% learnt about CBD and CBB respectively from Obs. *97% received CBB information; most common CBB information source was advertisements (38%) and media/internet (36%). | Only highly educated,urban women who received antenatal care and education were included. Results may not be generalized. Survey Tool not validated. |
13 | Manegold et al. (2011) | To explore the attitudes of donating parents towards public and private CB banking. | Switzerland Public CB bank | 300 Recent Swiss, western and eastern European public CB donors. Purposive Sampling Surveys distributed = 621 Response rate = 48.3% | Quantitative Standardised anonymous questionnaire 20 multi-choice and open ended questions | Overall: Motivation for private or hybrid CB banking is low in this population. Source of CBD information *54% from HP *22% from more than 1 source: family, friends and media *34% actively sought CBD information CBD vs CBB Options *2% would CBB for next infant *27% did not know of CBB *69% opted for CBD due to altruism and cost of CBB | 84% of the open questions were unanswered Only donors whose CB was accepted for storage were included in study May not be generalized to the entire donor population Survey tool not validated |
14 | Katz et al. (2011) Europe | To explore pregnant women’s awareness of CB stem cells and their attitude towards banking. | 5 European countries: France, Germany, Italy, Spain, United Kingdom. 6 urban maternity hospital antenatal clinics with over 1000 births per annum (Germany = 2 antenatal classes in lieu of clinic) | 1620 Pregnant women who had not previously enrolled in a CB banking program. France n = 318 UK n = 290 Germany n = 313 Spain n = 323 Italy n = 376 Purposive Sampling | Quantitative Anonymous self-directed multi-choice questionnaire | Overall: Study revealed strong preference for CBD. Attitudes were not an obstacle to CBB.
CB Information and knowledge
*79.4% declared poor CBB knowledge. *59.6% received information via mass media and internet. *20% received information from HP. *91.6% believed they should be systematically informed.
CB banking choices
*89% would collect CB; 11% would discard CB; 77% would CBD; 12% would CBB; 12% would store in hybrid bank
Choice for CBD
*59% said altruism; 30% believe a duty to donate *24% would change birth hospital in order to be able to CBD
Choice for CBB
*12% would CBB; 51% of these women would do so due to possible future medical research therapies *16% would do so for insurance reasons | Ethnic breakdown was not reported. Data collection differed across sites: German questionnaires conducted in antenatal classes not clinics as in other 4 countries CBB not available in 3 countries at time of study (France, Italy and Spain) Knowledge not awareness reported. Survey tool validated |
15 | Suen et al. (2011) | To assess knowledge of private cord blood banking among pregnant women | Hong Kong 2 large public maternity units | 1866 Pregnant women accessing antenatal clinic. Surveys distributed = 2000 Response rate = 93.3% Convenience Sampling | Quantitative Cross-sectional self-administered questionnaire Survey validated | Overall: Study revealed inadequate knowledge on CBB and use.
Understanding
*78.2% reported no understanding of likelihood CBB use
Awareness
*Only 58.5% were aware of CB use for childhood leukemia
Knowledge
*20.3% knew of CB availability from public CB banks
Preferred source of CBB information
*44% stated Dr.; 32% stated CBB staff *22% stated unsure who to receive information from; 7% stated N/MWs Government involvement * 89% wanted more promotion and education on CBB | Sampling limited to public patients who did not have the option of CBB unless indicated for medical reasons. |
16 | Salvaterra et al. (2010) | To analyze knowledge, comprehension, opinions, attitudes and choices related to cord blood donation of pregnant women, future parents, donors, midwives, obstetricians/ gynaecologists. To compare preferences of public versus private banking. | Italy Hospital, community & academic sector participation | Pregnant women, future parents and donors (n = 30) 32 antenatal health care providers consisting of: 10 community midwives 12 hospital midwives 10 obstetricians (public and private) Multiple sampling methods | Mixed methods using participatory approach with establishment of a taskforce and public multidisciplinary round table Focus groups; (max. n = 10 participants, led by 2 psychologists) Self -administered questionnaires at completion of focus groups (n = 20) | Findings reported from pregnant women, future parents and donor perspectives: Overall: *CBD considered a gift of moral and social value; Participants would CBD for altruistic purposes. *CBB was associated with egoism and fraud. *100% wanted more information and clear procedures on CBB. *100% stated HP should be educated on CBB/CBD and inform future parents during pregnancy *70% (14/20) reported poor knowledge of CBD | Included only those in an urban setting and didn’t include any minority groups. Few knowledge questions; most opinion based. Small sample sizes allowed for limited between group comparisons Researchers developed own assessment tool Knowledge not reported |
17 | Rucinski et al. (2010) | To explore the knowledge, attitudes, beliefs and practices regarding cord blood donation among Hispanic and non-Hispanic black women. | United States of America 1 Community Health Centre and 1 Community Hospital in Chicago, Illinois | 41 Hispanic and non-Hispanic pregnant black women, or who had given birth in the last 12 months, > 18 yrs., had received antenatal care by the 2nd trimester; did not have any religious objections to donation. Purposive sampling. | Qualitative 5 Focus groups: 1 Hispanic (English) n = 5 1 Hispanic (Spanish) n = 9 3 non-Hispanic n = 8/9/10 | Overall: Most not aware of, what it involved, or the value of, CBD for treatment and research. Participants believed that Drs provide CBD information Initial analysis did not reveal strong ethnic difference in knowledge or attitudes towards CBD.
Knowledge/Awareness
*Participants who reported awareness of saving CB, was in reference to CBB not CBD. *Participants reported confusion between CBD and CBB options.
Information needs and sources
*Those who had birthed expressed concern that they had’t been informed by HP on CBD option *Many wanted CBD info from their Dr. due to trust/respect in Dr. being source of factual information and perceived ability to answer questions on topic. *Some parents reported Dr. indifference on topic and Dr. failure to spend time providing health related answers to questions which reduced faith that Drs were reliable source of information. | Very specific inclusion criteria so results could not be generalized to the wider population. |
18 | Palten & Dudenhausen (2010) | To evaluate the correlation between German-speaking women’s knowledge of cord blood banking and their level of education. | Germany (Perlow, 2006) 1 obstetric hospital in Berlin, 3 ANC | 300 Pregnant women over the age of 18 years in their 3rd trimester Surveys distributed = 313 Response rate = 96% Quota Sampling: to gain comparative number to Fox et al. (2007) study | Quantitative Multi-choice response Questionnaire | Overall: Women were poorly educated about CB storage usefulness, costs and methods.
Education
*35% well educated (University degree). *Women with higher education level had read more CBB information
Knowledge
* 50–65% were unaware of CB treatable illnesses
Source of CB information
*74%: reading material and commercials. *59%: material by private CBB. *26%: public CBD banks.
CB discussion with obstetrician
*5% discussed it with Obs; 1% had it raised by Obs | Language interpreted tool used by Fox et al. (2007), although cultural and health system differences make comparisons of findings difficult. Awareness not knowledge reported. |
19 | Dinc & Sahin (2009) | To determine pregnant women’s knowledge and attitudes towards stem cells and cord blood banking in Instanbul. | Turkey 2 Antenatal clinics: 1 in a University Medical Centre, 1 in a Family Planning Centre. | 334 Pregnant women accessing antenatal clinic in Instanbul. Convenience Sampling | Qualitative Exploratory descriptive study of Interviews: yes/no and open ended questions | Overall: Women with a higher education had higher levels of knowledge about CB and stem cells. Most had a lack of knowledge on the topics and wanted more information from HP.
Knowledge
*Only 26.9% aware of CB and stem cells.
Source of CB information
*72% stated media; 28% stated Obs
Preferred source of information
*79% stated Obs; 21% stated N/MW
Main reasons for CBB
*48.9% stated possible future need *22% it is beneficial; 10% future regret *8% insurance for child
Main reasons against CBB
*68.7% not necessary; 21% limited information | Select sample of women in 2 antenatal clinics in1 location so may not be generalized to the rest of the population. Awareness not knowledge reported. |
20 | Fox et al. (2007) | To evaluate patient understanding of cord blood banking. | United States of America 1 large Obstetric Hospital, New York with access to public and private CB banking, ANC | 325 pregnant women Quota sampling Surveys distributed =724 Response rate = 44.9% | Quantitative Anonymous multi-choice questionnaire | Overall: Women had very poor understanding of CB uses and banking.
Education status
94% completed undergraduate degree 58% completed post graduate degree.
Awareness
*54.4% unaware of medical conditions treatable with CB.
Main CB Information source
*86.5%: private CBB literature *29.2%: Public CBD banks literature *36.9%: Discussion with Obs though not stated who initiated the conversation.
Reasons for private CBB
*83%: protect infant in future | Survey conducted in early pregnancy. Only 45% of surveys completed so may indicate a bias of results. Study did not examine the extent of the women’s knowledge of CBB. |
21 | Perlow (2006) | To determine patients’ knowledge of cord blood banking. | United States of America 1 Obstetric Medical Centre Phoenix, Arizona. | 425 Pregnant women attending for antenatal consultation, or ultrasound. Convenience Sampling | Quantitative Convenience Sampling 2. part questionnaire: 1. Awareness 157 (37%) unaware of CB banking. Completed part 1 only. 2. Knowledge 268 (63%) completed part 1&2. | Overall: Patients poorly informed about CBB (74%, 315/425). Few receive CB education from HP. Lack of knowledge and expense CBB barriers.
Awareness of CBB
*63% were aware. Remainder excluded from part 2 of study. *Women with lower education less likely to be aware than women with a University degree (22% v 78%). * Women under age 25 less likely to be aware (53% v 68%). *Ethnic women had less awareness then Caucasian women.
Knowledge of CBB
*74% stated minimally informed. *3% stated extremely knowledgeable on the subject.
Source of CBB information
*53% informed by media; 17.5% informed by Dr.; 8.2% informed by other HP.
Barriers to CBB
*Cost (30%); low knowledge (31%), misinformation on who could use CB (50%). | Addressed private CBB only. Conducted in one location only so may not be representative of the general population. Lack of cultural diversity, small numbers of Native and African Americans in the survey. Last two questions of the survey were not completed by all participants. |
22 | Danzer et al. (2003) | To evaluate the attitudes of mothers towards cord blood donation for therapeutic use 6 months post donation. | Switzerland 1 University Hospital with a CB collection centre | 78 Women 6 months post- partum who donated cord blood Purposive Sampling Response rate = 59.5% (Total surveys distributed = 131) | Quantitative Survey Standardized anonymous questionnaires Multi-choice format, with 1 open ended question. | Overall: A High degree of satisfaction with CBD.
Responses regarding CBD
100% believed CBD was ethical *96.1% would CBD again *74.8% emotionally satisfied about CBD
Original source of CBD information
*81.3% from their Dr.; 18.7% from media and friends. *No significant association between information source and decision to donate again. Open ended question comments *8 women supported importance of CB collection centres; 5 expressed concern for improper use, 2 expressed concern donated CB may not be available for own child. | Women from one Institution only were surveyed. A total of 131 were sent surveys however, 40.5% did not respond. |
23 | Fernandez et al. (2003) | To examine pregnant women’s knowledge and attitudes regarding CB banking, which maybe used in the development of policies and procedures for public and private CB banking? | Canada 1 Regional Women’s Hospital | 443 English speaking pregnant women attending antenatal clinic. Response rate = 68% (Total surveys distributed = 650) Convenience Sampling | Quantitative Questionnaires developed by Authors | Overall: Most women were supportive of CBD for transplantation and research.
Knowledge
*72% reported poor or very poor CBB knowledge (n = 310) 25% overestimated risk of a child requiring a stem cell transplant
Preferred CB education source
*66% HP; 68% Dr.; 70% ANC.
CB Banking option
*14% would choose CBB due to a good investment. *86% would choose to CBD due to altruism. | High proportion of participants were university or college educated. Little ethnic diversity in group. No established public or private CB banks in the area at the time the study was conducted. |
24 | Sugarman et al. (2002) | To evaluate the informed consent process for cord blood donation. | United States of America 2 CB Collection centres associated with a Public CB Bank. | 170 Pregnant women in the 3rd trimester who had consented to cord blood donation Convenience Sampling | Qualitative Telephone interviews | Overall: Women were satisfied with consent process (96.9%), most (98.8%) would donate again, though did not seem to know about alternatives to CBD.
Other responses to CBD process
*Only 32.9% understood they had the option not to have CB collected. *Only 55.3% understood the option of CBB. 78.8% incorrectly thought they could donate CB to a specific recipient. Incorrect endorsement of CBD *Diagnosis of genetic disease of infant (92.9%) and mother (88.2%) * Diagnosis of infectious disease of infant (88.2%) and mother (87.1%) *Protection for infant (48.8%) | Sample limited to those who had consented to CBD at 1 public bank. Understanding of CBD and uses may differ in women who chose not to CBD and where CBB is an option. Interviews were conducted 1 month post -partum so information previously conveyed and understood may have been forgotten. |
25 | Sugarman et al. (1998). | To learn about pregnant women’s concerns regarding CB collection and banking in order to establish a comprehensive recruitment and informed consent process for donation. | United States of America 3 antenatal clinics (1 private, 2 public) affiliated with CB collection centres. | 19 Pregnant women in their 2nd & 3rd trimester Purposive sampling | Qualitative Focus group discussions | Overall: 100% indicated they lacked sufficient or substantial prior knowledge of CB technology. Desire for more information about collection, storage and use of CB, especially difference between CBB and CBD was identified.
CB education
*100% believed in importance of CBB education including collection, storage and use. *Earlier the education was provided promoted a feeling of choice. *CB education should be in various formats: clinic pamphlets/posters, parenting magazines, information hotlines, television advertisements & reports, ANC.
Safety of mother and infant
*Important to inform women that CB collection does not alter the birth process.
Reasons for CBD
*Altruism was main reason *Influence of others may give cause for more likely CBD. | Findings context specific, not able to be generalized to broader population. |