PMID- 29624126 OWN - NLM STAT- MEDLINE DCOM- 20190715 LR - 20230928 IS - 1552-8456 (Electronic) IS - 0193-9459 (Print) IS - 0193-9459 (Linking) VI - 41 IP - 4 DP - 2019 Apr TI - Health-Related Quality of Life and Personal Life Goals of Adults With Sickle Cell Disease After Hematopoietic Stem Cell Transplantation. PG - 555-575 LID - 10.1177/0193945918768277 [doi] AB - Allogeneic hematopoietic stem cell transplantation (HSCT) from a human leukocyte antigen (HLA)-matched sibling donor offers a unique therapy to reverse SCD. This mixed-methods study explores recipients' perception of HSCT success, personal life goals, and associated health-related quality of life (HRQOL) more than 1 year after HSCT. Recipients completed the Short Form-36, version 1 (SF-36v1) HRQOL survey followed by a 60- to 90-min face-to-face or telephone audio-recorded interview. Eleven of 15 eligible recipients participated in the study. Although the eight HRQOL subscale scores varied, the three recipients with a successful HSCT and the highest scores were pursuing their personal life goals. The four with avascular necrosis (AVN) had lower scores related to AVN limitations, yet they were pursuing their personal goals. The two reporting a failed HSCT had reverted back to having SCD, and their subscale scores were among the lowest. Our results show that HSCT success, ability to pursue goals, and HRQOL align in predictable ways. FAU - Gallo, Agatha M AU - Gallo AM AUID- ORCID: 0000-0002-4419-8210 AD - 1 University of Illinois at Chicago, IL, USA. FAU - Patil, Crystal AU - Patil C AD - 1 University of Illinois at Chicago, IL, USA. FAU - Adeniyi, Tokunbo AU - Adeniyi T AD - 1 University of Illinois at Chicago, IL, USA. FAU - Hsu, Lewis L AU - Hsu LL AD - 1 University of Illinois at Chicago, IL, USA. FAU - Rondelli, Damiano AU - Rondelli D AD - 1 University of Illinois at Chicago, IL, USA. FAU - Saraf, Santosh AU - Saraf S AD - 1 University of Illinois at Chicago, IL, USA. LA - eng GR - K23 HL125984/HL/NHLBI NIH HHS/United States PT - Journal Article PT - Research Support, Non-U.S. Gov't DEP - 20180406 PL - United States TA - West J Nurs Res JT - Western journal of nursing research JID - 7905435 SB - IM MH - Adult MH - Anemia, Sickle Cell/psychology/*therapy MH - Female MH - *Goals MH - Hematopoietic Stem Cell Transplantation/methods/psychology/*standards MH - Humans MH - Illinois MH - Interviews as Topic/methods MH - Male MH - Middle Aged MH - Psychometrics/instrumentation/methods MH - Qualitative Research MH - Quality of Life/*psychology MH - Surveys and Questionnaires PMC - PMC6167199 MID - NIHMS976708 OTO - NOTNLM OT - health-related quality of life OT - mixed methods OT - personal life goals OT - sickle cell disease OT - stem cell transplantation EDAT- 2018/04/07 06:00 MHDA- 2019/07/16 06:00 PMCR- 2020/04/01 CRDT- 2018/04/07 06:00 PHST- 2018/04/07 06:00 [pubmed] PHST- 2019/07/16 06:00 [medline] PHST- 2018/04/07 06:00 [entrez] PHST- 2020/04/01 00:00 [pmc-release] AID - 10.1177/0193945918768277 [doi] PST - ppublish SO - West J Nurs Res. 2019 Apr;41(4):555-575. doi: 10.1177/0193945918768277. Epub 2018 Apr 6.