Knowledge and Perceptions of Cord Blood Donation among Pregnant Women

Transcription

1 Knwledge and Perceptins f Crd Bld Dnatin amng Pregnant Wmen Crd bld is cllected frm an infant s umbilical crd after delivery. This methd pses n risk t the mther r infant. Mst ften the cells are discarded with the umbilical crd as bihazard waste. The first successful crd cell transplant frm umbilical crd bld was accmplished in Since then the ptential uses fr crd bld has grwn. Umbilical crd bld cntains hematpietic stem cells that are very different frm ther types f cells in the bdy. These special stem cells have the ability t divide and renew themselves fr lng perids and have the ability t differentiate int all the cells f the bdy (Natinal Institute f Health, 2009). These stem cells can be used t treat malignant diseases such as acute lymphcytic leukemia, chrnic myelgenus leukemia, myeldysplastic syndrme, and neurblastma. Crd bld can als be used t treat a variety f nn-malignant diseases including Fancni s Anemia, Hunter Syndrme, Hurler Syndrme, idipathic aplastic anemia, thalassemia, and even steprsis. These hematpietic prgenitr cells have the ptential t develp int a variety f human cells. (Gluckman, 2009). Umbilical crd bld has been shwn t have ten times the amunt f hematpietic stem cells cmpared t bne marrw (Gunning, 2005). Nt nly is it faster and easier t find a tissue match thrugh crd bld, the risk f the recipient s bdy rejecting the dnatin is less than traditinal bne marrw transplants. The lymphcytes fund in crd bld are less active than f thse fund in bne marrw, specifically the CD8 natural killer cell which is the cause f Graft Versus Hst Disease (GVHD) (Gunning, 2005). Due t the lwer risk f GVHD crd bld des nt have t be a perfect human leukcyte antigen match. The ptential benefits f umbilical crd bld are hindered by the lack f knwledge amng pregnant wmen. Very few wmen are aware f the ptins fr dnating r banking crd Page 1 f 9

2 bld. There are fees assciated with private banking. An initial start up fee is charged fr cllectin and shipping t the facility, there is then a yearly fee required until the infant reaches the age f eighteen when it is then discarded. Cst fr strage can range frm a few hundred t several thusand dllars depending n the cmpany used. Units stred in private banks are reserved fr the child r immediate family members. Of thse units seventy percent will nt be HLA matches and will never be used (Navarrete & Cntreras, 2009). Similar published studies cnducted in ther cuntries have shwn the majrity f surveyed wmen had little knwledge f crd bld banking and dnatin. The majrity f thse surveyed wuld chse t dnate their infant s umbilical crd bld if given the pprtunity. There were limitatins t each f these studies. Each study had n mre than 500 participants and was cnducted in areas where crd bld banks are nt prminent. In a study cnducted in Turkey, nly 26% f surveyed wmen had infrmatin r knwledge abut crd bld banking and dnatin. In that same study 74% f wmen wuld dnate t a public bank if given the pprtunity (Dinc & Sahin, 2009). Utah is an ideal place t survey pregnant wmen. The 2010 U.S. Census reprted that the birth rate in Utah is 30% higher than the natinal average. Future grwth prjectins fr the natin predict that the rise in ppulatin will nly be 0.05% while the state f Utah will mre than duble its ppulatin in the same time frame. Currently, there are 142 public crd banks and 25 private banks (McKenna & Sheth, 2011), nne f which are in Utah. While it is pssible t dnate publicly t a bank in anther state, Utah des nt have this ptin. With the increased birth rate in Utah why then is there n pprtunity fr public banking? Page 2 f 9

3 One thusand surveys were distributed at fur bstetrical ffices where wmen wh were currently pregnant participated. It was discvered that there is a lack f knwledge in regards t crd bld dnatin. Methds and Materials The study was apprved by Internal Review Bard f Weber State University f Ogden, Utah. Sci-demgraphic infrmatin was cllected t determine if these factrs influenced the mther s knwledge and perceptins. Other questins included: knwledge and pinins f private verses public crd bld banking as well as dispsal f unused crd bld. Fur bstetrical clinics were surveyed in the Ogden, Utah area between February and March Clinic receptinists ffered the survey t pregnant wmen wh were at least eighteen years ld. A ttal f 341 surveys were cllected. Any that were incmplete r the participant was under the age f eighteen were discarded. The survey included a brief descriptin f the research but was limited t the purpse f the study, the ptin t privately r publicly bank crd bld cells, and the absence f public crd bld banking ptins in Utah. Participants were infrmed that Utah des nt currently ffer the ptin f crd bld banking. Signed cnsent frms were mitted frm the study since n identifiable infrmatin was cllected. Clinic staff was ffered a small incentive fr cllecting surveys. Cmpleted surveys were analyzed using factr analysis. Results Three hundred frty-ne surveys were analyzed. The range f ages amng ur participants was frm 18 t 40, with the average age being 29. Mst participants identified their educatin level as having sme cllege (168/341 r 49%). Incme f surveyed subjects ranged frm less than 20,000 t greater than 100,000 dllars per year. The average reprted incme Page 3 f 9

4 was 40,000 t 60,000 dllars per year (96/341 r 28%). Just ver half f participants (52%) were in their third trimester f pregnancy. Mst respndents (313/341 r 92%) stated that they were aware that umbilical crd bld culd be used fr treatment f sme diseases. Just ver half f participants (201/341 r 59%) did nt have a medical histry significant fr cancer r ther genetic disrders. Of the 41% that did have a medical histry significant fr cancer r ther genetic disrders, the verall majrity (115/140 r 82%) stated that they were cnfident r had sme knwledge. The majrity f subjects (325/341 r 95%) stated that neither they nr any f their family members had needed a bne marrw transplant. Of participants that did have a persnal r family histry f needing a bne marrw transplant, 12 (92%) stated that they were nt ffered crd bld transfusin as a treatment ptin and ne third f this grup (9/12 r 75%) had sme knwledge. When asked whether religin wuld influence their decisin t dnate crd bld, the majrity f participants said that it wuld nt (212/341 r 62%). Fifty-seven percent f thse that said that religin wuld nt influence their decisin identified themselves as LDS, 58% as Christian and 84% as Cathlic. One-third f surveyed wmen (111/341 r 33%) indicated that they were neutral regarding dnating crd bld t a public crd bld bank even if it were made available in the state f Utah. Seventy-ne percent f wmen stated that they wuld nt research crd bld dnatin n their wn. Discussin and Cnclusin We fund a strng psitive crrelatin between educatin level and wmen s knwledge f crd bld banking. There was als a strng psitive crrelatin amng the wmen wh stated Page 4 f 9

5 they had a persnal r family histry f cancer r genetic disease. Only a small percentage (18%) f surveyed participants said that they wuld pay t stre crd bld if the price were reasnable while a little mre than half (57%) f wmen stated that they wuld dnate t a public crd bank. Despite the fact that Utah has a strng religius traditin, sixty-tw percent f respndents said their religius beliefs wuld nt play a rle in their decisin t dnate r bank crd bld. Due t the lack f a public crd bank in Utah, thusands f units are destryed annually. This represents a huge lss f ptential stem cells that culd be used t treat diseases. Hwever, befre a bank can be established here, there are sme cncerns that shuld be addressed. Seventy-ne percent f wmen said that they wuld nt be willing t research crd bld n their wn. Fr a public bank t be successful in Utah, additinal infrmatin will need t be prvided. The majrity f the wmen in the study stated they wuld like t receive this infrmatin frm their physicians. As the science f stem cell treatment evlves the demand fr stem cells will increase. Cmbining the facts f Utah s high birth rate, their higher educatin level per capita cmpared t ther states, and that almst half f the surveyed wmen wuld be willing t dnate if given the pprtunity, Utah is an ideal lcatin fr a crd bld bank. References Dinc, H., & Sahin, N. (2009, June). Pregnant Wmen's Knwledge and Attitudes abut Stem Cells and Crd Bld Banking. Internatinal Nursing Review, 56(2), Gluckman, E. (2009, Nvember). Histry f Crd Bld Transplantatin. Bne Marrw Transplantatin, 44(10), Gunning, J. (2005, September). Umbilical Crd Bld Banking-Implicatins fr the Future. Txiclgy and Applied Pharmaclgy, 207, McKenna, D., & Sheth, J. (2011, September). Umbilical Crd Bld: Current Status & Prmise fr the Future. Indian Jurnal f Medical Research, 134(3), Natinal Institute f Health. (2009, April 28). Stem Cell Infrmatin. Retrieved February 19, 2011, frm Natinal Institute f Health: Navarrete, C., & Cntreras, M. (2009, Octber). Crd Bld Banking: A Histrical Perspective. British Jurnal f Haematlgy, 147(2), Page 5 f 9

6 Medical Labratry Sciences Department 3905 University Circle Ogden UT, Thank yu fr participating in this shrt survey abut umbilical crd bld banking and dnatin. Umbilical crd bld cntains stem cells that can be used in the treatment f genetic bld diseases such as thalassemia and leukemia. The bld is harvested frm the discarded umbilical crd after delivery, a prcess that des nt harm the infant. There are ptins t dnate the crd cells t a public bank t be used by the general public r t pay fr the use f a private bank where nly the dnating family may btain access. Currently there is n pprtunity t publicly dnate crd bld in the state f Utah. The purpse f this survey is t understand wmen s knwledge abut crd bld banking and dnatin. Participatin in this survey is strictly vluntary and cmpletely annymus. Yur answers and pinins will have n influence n yur care and will nt be kept as part f yur medical recrd. 1. What is yur age? 2. Which f the fllwing best describes yur educatin level? Sme high schl cmpleted High schl graduate r equivalent Sme cllege Bachelr s degree Pst Graduate Degree 3. Which f the fllwing best describes yur ttal family incme? Less than $20,000 per year 20,000 t 40,000 per year 40,000 t 60,000 per year 60,000 t0 100,000 per year Greater than 100,000 per year 4. What is yur current stage f pregnancy? 1 st trimester (1-3 mnths) 2 nd trimester (4-6 mnths) 3 rd trimester (7-9 mnths) 5. Hw many times have yu been pregnant? (Please cunt nly pregnancies that have resulted in a live birth.) Page 6 f 9

7 This is my first pregnancy Other: When answering the fllwing questins please chse the answer that mst clsely represents yur knwledge. Please answer all f the fllwing questins even if they may seem familiar. Yes N 6 Were yu aware that the bld frm the umbilical crd can be used fr the treatment f Y N sme diseases? 7 D yu have a histry f cancer r genetic disrders in yur family? Y N 8 Has yur healthcare prvider ffered infrmatin t yu regarding crd bld banking and Y N dnatin? 9 Wuld yu like fr yur healthcare prvider t prvide mre infrmatin n crd bld Y N banking? 10 Have yu r a member f yur family ever needed a bne marrw transplant? Y N 10a If yu answered yes t the abve questin, was a crd bld transfusin ffered as a Y N treatment ptin? 11 Have yu ever dnated bld r a bld prduct such as platelets r plasma? (Please d nt Y N cunt plasma dnatin fr mney.) 11a If yu are a regular bld dnr, hw ften d yu dnate per year? Hw wuld yu describe yur knwledge f crd bld dnatin/banking? I ve never heard f crd bld dnatin befre tday I ve heard f crd bld dnatin but didn t knw what it was I knew a little bit abut crd bld dnatin I feel cnfident in my knwledge f crd bld I ve dnated crd bld frm a previus pregnancy 13. If yu have heard f crd bld dnatin and banking, where did yu hear r learn abut it? Magazine TV Internet Healthcare Prvider Family r friend I have never heard f it befre tday Other: 14. If yur prvider were t ffer yu infrmatin regarding crd bld dnatin and banking, what type f infrmatin wuld yu mst like t receive? I wuld nt like infrmatin regarding crd bld dnatin The purpse and uses f crd bld Hw crd bld is cllected Page 7 f 9

8 The cst f privately banking r dnating crd bld Side effects r risks assciated with cllectin f crd bld Other: On the fllwing questins, please chse the answer the best describes yur pinin. 15. Hw wuld yu describe the influence yur religius beliefs wuld have n yur decisin t bank r dnate crd bld? Wuldn t influence my decisin Might influence my decisin Wuld definitely influence my decisin I dn t knw my religin s psitin n crd bld banking and dnatin N pinin 16. Please list yur religius preference. I prefer nt t respnd 17. When privately banking crd bld, there is a start-up fee assciated with this service. Hw much wuld yu be willing t pay as an initial cst t stre bld cells frm the umbilical crd? I wuld nt pay t privately stre crd bld. N mre than $250 $250-$500 $500-$1000 $1000-$2000 $2000-$5000 Mre then $ If yu were t pursue string yur baby s crd bld at a private crd bld bank, hw much wuld yu be willing t pay per year fr strage? I wuld nt pay t privately stre crd bld N mre than $25 $25-$50 $50-$100 $100-$250 Mre then $ If the price f crd bld banking were reasnable t yu, hw likely wuld yu be t privately stre bld cells frm the umbilical crd? I wuld nt pay t privately stre crd bld n matter the cst Page 8 f 9

9 I might pay t stre the bld frm the umbilical crd I wuld definitely pay t stre the bld frm the umbilical cr Please rate hw much yu agree r disagree with the fllwing statements Crd bld shuld nly be stred fr use by family members. Currently in the state f Utah, there are n public banks fr crd bld dnatins. If ne were t becme available, I wuld be willing t dnate. If crd bld that I dnated were unable t be used fr the treatment f thers, I wuld allw research t be dne n thse cells. If the crd bld I dnated were used fr research purpses, I am cmfrtable knwing that a pharmaceutical cmpany culd be making a prfit frm that research. If dnated crd bld is unable t be used as treatment, it shuld be destryed. After cmpleting this survey, I am likely t lk int crd bld banking and dnatin n my wn. Highly Disagree Disagree Neutral Agree Highly Agree I Dn t Knw r Nt Applicable If yu have questins r cncerns please feel free t cntact Travis Price f Weber State University at r by at tprice@weber.edu Page 9 f 9