A psychosocial clinical care pathway for pediatric hematopoietic stem cell transplantation

Abstract

Objective: Currently, no evidence-based psychosocial clinical care pathways (PCCP) exist to triage psychosocial risk levels and guide delivery of psychosocial care to youth receiving a hematopoietic stem cell transplantation (HCT) and their families. The purpose of this paper is to describe the use of qualitative research methodologies to develop PCCP in pediatric HCT consistent with the Standards for Psychosocial Care developed for children with cancer. Methods:We previously used qualitative methodologies to interview parents to identify four principles to inform the development of PCCPs. Then in this study a focus group with parents and multidisciplinary clinicians was conducted to assess the acceptability of the PCCP, suggest modifications, and provide input on its use. Results:The PCCP is six-step pathway, starting with a standardized screening assessment with the Psychosocial Assessment Tool (PAT-HCT) that identifies the family's specific care needs. The focus group data support overall assessment with the PAT-HCT and the care principles underlying this approach.Conclusions: This PCCP is a systemic multidisciplinary model for providing psychosocial care that is ready for the next stage of development and evaluation in clinical care.

The impact of pediatric hematopoietic stem cell transplant timing and psychosocial factors on family and caregiver adjustment

“…Data for the current study were drawn from a three‐site study that validated a psychosocial risk screening tool and examined potential psychosocial care pathways for families impacted by pediatric HCT 3,4,16 . Caregivers of children (≤ 18 years old) scheduled to undergo their first HCT were recruited from three geographically diverse children's hospitals.…”

“…For some families, HCT occurs after an initial course of treatment for a malignancy, which may also compound financial strain. Therefore, it is not surprising that the impact of pediatric HCT can extend past the adjustment and health of the child receiving treatment to multiple domains of family functioning (i.e., social functioning, financial burden, and caregiver adjustment) 3,4 . However, this impact varies among families 5–7 .…”

Implementation of family psychosocial risk assessment in pediatric cancer with the Psychosocial Assessment Tool (PAT): study protocol for a cluster-randomized comparative effectiveness trial

“…The PAT is acceptable to families across race, ethnicity, and SES [7,8,10,16,17,29] and has been shown to impact psychosocial outcomes at higher levels of distress when results are shared with staff [30]. We adapted the PAT for hematopoietic stem cell transplantation (HCST) [31] including development of a clinical pathway to facilitate its integration in clinical care [32,33], and in sickle cell disease, adding items to capture relevant aspects of the social context for families (e.g., school absences, changes in housing) [34].…”

Implementation of family psychosocial risk assessment in pediatric cancer with the Psychosocial Assessment Tool (PAT): Study protocol for a cluster randomized comparative effectiveness trial

“…30 Our group has adapted the PAT for use in hematopoietic stem cell transplantation (HCST) 31 including development of a clinical pathway, guided by stakeholder input, that could facilitate its integration in clinical care. 32,33 We have also adapted the PAT for use in Sickle Cell Disease, adding items to capture relevant aspects of the social context for families (e.g., school absences, changes in housing). 34 Although requests for the PAT have increased as cancer programs strive to respond to the Standards, we do not know the extent to which the PAT has been adopted, whether implementation is consistent across families, and if PAT implementation is sustained.…”