|Year : 2021 | Volume
| Issue : 2 | Page : 189-192
Matched unrelated donor attrition in a stem cell registry: What makes people break their commitment?
Vikash Chandra Mishra, Amit K Bhardwaj, Nikki Dey, Dinesh Chandra, Archana Anthwal, Vimarsh Raina
Genebandhu, New Delhi, India
|Date of Submission||15-May-2021|
|Date of Decision||14-Jul-2021|
|Date of Acceptance||08-Oct-2021|
|Date of Web Publication||30-Nov-2021|
Dr. Vikash Chandra Mishra
Genebandhu, New Delhi
Source of Support: None, Conflict of Interest: None
Background and Objective: Increment in voluntary stem cell donor registrations has led to an increase in the chances of a patient finding a perfect match for matched unrelated donor (MUD) hematopoietic stem cell (HSC) transplant. However, it has been seen multiple times that the donor's passion to donate HSCs is short lived. They register with a strong commitment, however, when they are approached to donate, they back out. This write-up is an attempt to quantify and analyze the rate and reasons of MUD deferral in a stem cell registry from North India. Methods: Registered volunteer stem cell donors who backed out after getting matched were interviewed to understand the reasons behind their deferral. Key steps taken for sustaining the passion of registered donors included amendments in the donor recruitment process and maintaining constant communication with the recruited donors. Results: The attrition rate of the registry for final donation during the studied period was 22.91%. A total of 22 cases of donor deferral were observed. Among these, 15 donors (68.19%) who backed out were female and 7 (31.81%) were male. There were three main reasons observed behind this attrition, namely personal reasons, medical reasons from the donor side, and medical reasons from the patient side. Conclusion: To minimize donor deferral, various new strategies could be implemented such as requesting the participation of experienced donors in counseling sessions, requesting guardian's involvement in case the donor is a teen or is in their early twenties (between 18 and 25 years), and requesting the name of the person they consulted before signing up for donation.
Keywords: Donor attrition, donor deferral, hematopoietic stem cell transplant, matched unrelated donor, stem cell registry, voluntary stem cell donor
|How to cite this article:|
Mishra VC, Bhardwaj AK, Dey N, Chandra D, Anthwal A, Raina V. Matched unrelated donor attrition in a stem cell registry: What makes people break their commitment?. Glob J Transfus Med 2021;6:189-92
|How to cite this URL:|
Mishra VC, Bhardwaj AK, Dey N, Chandra D, Anthwal A, Raina V. Matched unrelated donor attrition in a stem cell registry: What makes people break their commitment?. Glob J Transfus Med [serial online] 2021 [cited 2022 Aug 10];6:189-92. Available from: https://www.gjtmonline.com/text.asp?2021/6/2/189/331611
| Introduction|| |
Hematopoietic stem cell transplant (HSCT) is a potentially curative treatment care for several malignant disorders such as leukemia as well as nonmalignant disorders such as thalassemia and aplastic anemia. About 25% of patients have a chance of finding matching HLA within the family known as a matched related donor, while the rests 75% are dependent on voluntary stem cell donors known as matched unrelated donors (MUDs) for HSCT. As per the World Marrow Donor Association, there are more than 38 million donors registered across the globe. Among these, India has a representation of around 0.5 million. The annual increase in the number of voluntary stem donors from 4.8 million to approximately 38 million between 1997 and 2020 would not be possible without the enlargement of the voluntary stem cell donor registries across the globe., With the increase in the number of registered voluntary stem cell donors, it has increased the chances of finding a suitable MUD for a hematological disorder patient to have a MUD HSCT. However, retention of the registered donor is not an easy task due to the vibrant nature of the socioeconomic environment and the human factors involved.,, Unlike blood donation, which has widespread acceptance, blood stem cell donation faces several challenges, including a lack of social awareness. Deferral of matched donors may adversely affect patient outcomes. A stem cell registry operating from North India has over 7700 registered voluntary stem cell donors and has assisted 15 MUD HSCTs from its database. During the MUD workup, several cases of donor back-out were observed.
Aims and objectives
The present study was undertaken to analyze the deferral incidence and its reasons among the registered voluntary stem cell donors who were found to be matched for patients who required MUD HSCT.
| Materials and Methods|| |
This is a retrospective analysis to understand the reason of attrition deferral incidence and pattern among the registered voluntary stem cell donors via all the assisted MUD workup. The consent has been taken for participation in the study and publication. All participants were aware that the names, initials, and photographs would not be disclosed and all standard protocols would be followed to maintain donor confidentiality.
Data collection and definitions
Data were extracted from the total MUD HSCT workup received from the transplant center/patient registry across the globe between May 2012 and December 2020. MUD registration camps were organized at religious, medical, and educational institutions in North India. Seven thousand and seven hundred and ninety-six donors were registered till December 2020. Among these, 6131 (78.64%) were male and 1665 (21.36%) female, as shown in [Table 1]. From these donors' data pool, 96 matches were identified for the patient who was looking for MUD HSCT.
|Table 1: Representing total registered donors during May 2012-December 2020|
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Statistical analysis was done by using Microsoft Excel 2010.
The ethical clearance for the study was taken from the board of the trust that runs this stem cell registry. The study was carried out as per the Declaration of Helsinki.
| Results|| |
Out of 7796, HLA typed registered MUDs; 15 HSCT workups have been assisted. A total of 96 matched donors were identified out of 1467 search requests during the studied period. Out of 96 matches, 37 cases moved to the next stage – confirmatory typing and infectious disease marker testing, and finally, only 15 workups have been done successfully, as presented in [Figure 1]. All these 96 matched donors were approached about their availability for donation. During the studied period, the attrition rate of the registry was 22.91%. A total of 22 donors out of identified 96 matched donors backed out after getting the formal workup request. Out of these 22 (22.91%) deferrals, as shown in [Figure 2], a major percentage of deferral was observed among females. A total of 15 donors (68.19%) who backed out were female and 7 (31.81%) were male. Among female donors, 11 (73.33%) were aged between 20 and 25 years, and the remaining 4 (26.67%) were above 30 years. Similarly, among males, 4 (57.14%) were aged between 20 and 25 years, and the remaining 3 (42.86%) were above 30 years. Donors who backed out after getting matched were interviewed to understand the reasons behind their denial. There were majorly three reasons observed behind all the deferrals.
|Figure 1: Hematopoietic stem cell transplant workup data during May 2012–December 2020|
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|Figure 2: Representing donor deferral data (%) during May 2012–December 2020|
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Deferral because of the personal reason
This was a major reason observed among donors who backed out to donate hematopoietic stem cells (HSCs). Among the denial of 22 donors, 19 (86.36%) were because of personal reasons which include pressure from family members and relatives. Among these, 15 (78.95%) were female and 4 (26.67%) were male. All the deferrals identified among females were due to personal reasons. This also highlights the characteristics of influencers in our society.
Deferral because the donor was medically unfit
In our community, this was found to be a minor reason for donor deferral. Only 2 donors (9.09%) were found to be medically unfit for donation due to cardiovascular disease. Both of them were male and above 30 years of age.
Deferral because the patient was medically unfit for transplant
There was only a single (4.54%) case observed in the entire workup, in which the patient relapsed at the last moment and hence workup got deferred.
The donors who backed out because of personal and medical reasons were permanently removed from the registry. Whereas the donor in which deferral was because of medical issue from the patient side has still kept in registry. We have not approached the donor again who had been permanently removed from the registry. Additionally, no temporary (for some time) deferral was identified.
| Discussion|| |
MUD deferral is a painful and sad experience for the patient who is in dire need of MUD HSCT. We have observed 22.91% donor attrition, and a major percentage of deferral was because of personal reasons (86.36%). Furthermore, any association between donor deferral and patient location, patient gender, and type of donation process was not observed in our study. A smaller number of samples could be attributed for such observations as some of the reports suggested that age and type of donation were among the list of the higher likelihood of donor deferral. A study conducted by Balassa et al. observed 38.3% deferral because of personal reasons. Our study revealed that the prime reason for the denial was personal, in which family pressure played a major influence in decision-making. This is a result of partial awareness and inertia to take a bold step forward, especially at a younger age. After retrospective analysis for the causes of back-outs for the period studied, the following additional steps could be implemented additionally during the MUD donor recruitment and counseling. During the MUD recruitment stage, interested and registered volunteer donors can be inquired whether they would be capable to take self-sufficient decisions or any family members or relatives would be involved in the decision-making process. Additionally, they also have to give the details of those persons who would be involved in making final decisions about the donation. Involvement of local religious and spiritual leaders may be adopted during the recruitment. Head of the educational institutions of a particular region can be requested for assistance during the counseling. Similarly, dedicated volunteers from corporate may be asked to assist during counseling. Donors from similar backgrounds and who have already donated in the past can be requested to assist while counseling new donors.
Counseling the influential family members, friends, relatives, community, and religious leaders is often as important as counseling the registered donor in our community. These data highlight the characteristics of influencers, especially the family members in deciding for volunteer action in form HSC donation in India. Implementing methods discussed and seeking the assistance of experienced donors, may help to decrease the deferral rate by matched donors which is a major barrier for matched unrelated HSCT.
| Conclusion|| |
It is important to determine the rate and causes of donor's deferral for HSCT to guide the recruitment and retention efforts at local, regional, and national levels. To ensure a near zero attrition rate, various measures could be adopted such as requesting the participation of experienced and knowledgeable donors in counseling sessions, requesting guardian's participation in case the donors are in their early twenties (18-25 years), requesting the name of the person they consulted before signing up for donation and finally ensuring that voluntary donors understand the the potential damage of backing out at a late stage. This information can be used as a baseline for similar studies in India as the numbers of registered voluntary stem cell donors and subsequently chances of getting matched donors for MUD HSCT are increasing.
This study was limited by the small sample size and opens the need for further detailed analysis with a bigger sample size.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]