title: The impact of pediatric blood and marrow transplant on parents: introduction of the parent impact scale.
abstract: BACKGROUND
  Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation.
  
  
  METHODS
  This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables.
  
  
  RESULTS
  PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01).
  
  
  CONCLUSIONS
  Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.
authors.affiliation: Johns Hopkins University School of Nursing, 525 N Wolfe Street, Baltimore, MD, 21205, USA. kgriff12@jhu.edu.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: Heinze
authors.affiliation: Tufts Medical Center, 800 Washington Street #345, Boston, MA, 02111, USA. arodday@tuftsmedicalcenter.org.
authors.forename: Angie Mae
authors.initials: AM
authors.lastname: Rodday
authors.affiliation: Johns Hopkins University School of Nursing, 525 N Wolfe Street, Baltimore, MD, 21205, USA. mnolan3@jhu.edu.
authors.forename: Marie T
authors.initials: MT
authors.lastname: Nolan
authors.affiliation: Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI, 53226, USA. kbingen@mcw.edu.
authors.forename: Kristin
authors.initials: K
authors.lastname: Bingen
authors.affiliation: Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI, 53226, USA. mkupst@mcw.edu.
authors.forename: Mary Jo
authors.initials: MJ
authors.lastname: Kupst
authors.affiliation: City of Hope, 1500 E. Duarte Road, Duarte, CA, 91010, USA. supatel@coh.org.
authors.forename: Sunita K
authors.initials: SK
authors.lastname: Patel
authors.affiliation: Fred Hutchinson Cancer Research Center, 1100 Fairview Avenue N, Seattle, WA, 98109, USA. ksyrjala@fhcrc.org.
authors.forename: Karen
authors.initials: K
authors.lastname: Syrjala
authors.affiliation: Baylor College of Medicine, One Baylor Plaza, Baylor, TX, 77030, USA. llhari1@texaschildrens.org.
authors.forename: Lynnette
authors.initials: L
authors.lastname: Harris
authors.affiliation: Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USA. Christopher_Recklitis@dfci.harvard.edu.
authors.forename: Christopher
authors.initials: C
authors.lastname: Recklitis
authors.affiliation: University of Pennsylvania School of Medicine, 3501 Civic Center Boulevard CTRB 10311, Philadelphia, PA, 19104, USA. schwartzl@chop.email.edu.
authors.forename: Lisa
authors.initials: L
authors.lastname: Schwartz
authors.affiliation: Cincinnati Children's Hospital Medical Center, 3333 Burnett Avenue, Cincinnati, OH, 45229, USA. Stella.davies@cchmc.org.
authors.forename: Stella
authors.initials: S
authors.lastname: Davies
authors.affiliation: Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USA. eva_gunian@dfci.harvard.edu.
authors.forename: Eva C
authors.initials: EC
authors.lastname: Guinan
authors.affiliation: Children's Hospital of Pittsburgh of PUMC, 4401 Penn Avenue, Pittsburgh, PA, 15224, USA. Robert.noll@chp.edu.
authors.forename: Robert
authors.initials: R
authors.lastname: Noll
authors.affiliation: Department of Psychiatry, Harvard Medical School, Boston, MA, 02115, USA. Grace.chang2@va.gov.
authors.forename: Grace
authors.initials: G
authors.lastname: Chang
authors.affiliation: Tufts Medical Center, 800 Washington Street #345, Boston, MA, 02111, USA. sparsons@tuftsmedicalcenter.org.
authors.forename: Susan K
authors.initials: SK
authors.lastname: Parsons
mesh_terms: D000328:Adult; D001803:Blood Transfusion / Q000523:psychology*; D016026:Bone Marrow Transplantation / Q000523:psychology*; D002648:Child; D002669:Child Welfare / Q000523:psychology*; D002675:Child, Preschool; D003625:Data Collection; D004644:Emotions; D005163:Factor Analysis, Statistical; D005260:Female; D006801:Humans; D007223:Infant; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D013315:Stress, Psychological