Unmet Needs of Siblings of Pediatric Stem Cell Transplant Recipients

Pentz, Rebecca D.; Alderfer, Melissa A.; Pelletier, Wendy; Stegenga, Kristin; Haight, Ann E.; Hendershot, Kristopher A; Dixon, Margie D.; Fairclough, Diane L.; Hinds, Pamela S.

doi:10.1542/peds.2013-3067

Cited by 46 publications

(71 citation statements)

References 20 publications

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“…Prior to fielding, these questions were tested via cognitive “three-step test” interviews (26) with parents who had previously made a decision about biologics. Recruitment continued until no major changes to any part of the larger survey, of which this study was a part, were needed in three consecutive interviews.…”

Section: Methodsmentioning

confidence: 99%

High Levels of Decisional Conflict and Decision Regret When Making Decisions About Biologics

Lipstein

Lovell

Denson

et al. 2016

J. pediatr. gastroenterol. nutr.

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Objectives To understand the association between parents’ perceptions of the decision process and the decision outcomes in decisions about the use of biologics in pediatric chronic conditions. Methods We mailed surveys to parents of children with IBD (inflammatory bowel disease) or JIA (juvenile idiopathic arthritis) who had started treatment with biologics in the prior two years and were treated at either of 2 children’s hospitals. The survey included measures of the decision process, including decision control and physician engagement, and decision outcomes, including conflict and regret. We used means and frequencies to assess the response distributions. General linear models were used to test the associations between decision process and decision outcomes. Results We had 201 respondents (response rate 54.9%). 47.0% reported using shared decision making. Each physician engagement behavior was experienced by the majority of parents, with the highest percentage reporting that their child’s physician used language they understood and listened to them. 48.5% of parents had decisional conflict scores of 25 or greater, indicating high levels of conflict. 28.2% had no regret, 31.8% had mild regret and the remaining 40.0% had moderate to severe regret. Shared decision making was not associated with improved decisional conflict, but physician engagement behaviors were associated with both decisional conflict and regret. Conclusions Improving decision outcomes will require more than just focusing on who parents perceive as controlling the final decision. Developing interventions that facilitate specific physician engagement behaviors may decrease parents’ distress around decision making and improve decision outcomes.

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Section: Methodsmentioning

confidence: 99%

High Levels of Decisional Conflict and Decision Regret When Making Decisions About Biologics

Lipstein

Lovell

Denson

et al. 2016

J. pediatr. gastroenterol. nutr.

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“…The continuing unmet needs of pediatric sibling donors have recently been highlighted, 26 and care pathways that address these needs should be explored.…”

Section: Discussionmentioning

confidence: 99%

Related hematopoietic cell donor care: is there a role for unrelated donor registries?

Anthias

Walraven

Sørensen

et al. 2015

Bone Marrow Transplant

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In almost half of allogeneic hematopoietic progenitor cell (HPC) transplants, a related donor (RD) is used, yet a lack of standardized guidelines means that their care is heterogeneous. Changes to regulatory standards aim to improve uniformity, but adherence to these regulations can prove logistically difficult for the transplant centers (TCs) managing RDs. Discussion has ensued around possible alternative models of related donor care and a session at the European Society for Blood and Marrow Transplantation (EBMT) annual meeting in 2013 debated the question of whether a role exists for unrelated donor registries in the management of 'related' donors. In this overview, we discuss the issues raised at this debate and the pros and cons of donor registry involvement in various aspects of RD management. By examining existing models of related donor care that have been adopted by members of the World Marrow Donor Association (WMDA), we look for ways to enhance and homogenize RD care, while also enabling transplant centers to meet standards required for mandatory accreditation.

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“…14,15 Following donation, 25%-35% of donors and their families have expressed a need for more predonation information about the donation process. 8,16 Although there is evidence of the potential HRQoL risks associated with pediatric HSC donation, the investigations providing this evidence have limitations including descriptive cross-sectional designs, small, nonrepresentative samples, varying time of posttransplant data collection, and lack of child self-reported HRQOL. 6,7 …”

mentioning

confidence: 99%

Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors

Switzer

Bruce

Kiefer

et al. 2016

The Journal of Pediatrics

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Objectives To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. Study design A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemo-graphic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. Results Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. Conclusions Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.

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Unmet Needs of Siblings of Pediatric Stem Cell Transplant Recipients

Cited by 46 publications

References 20 publications

High Levels of Decisional Conflict and Decision Regret When Making Decisions About Biologics

High Levels of Decisional Conflict and Decision Regret When Making Decisions About Biologics

Related hematopoietic cell donor care: is there a role for unrelated donor registries?

Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors

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