title: Validation of the human activity profile questionnaire in patients after allogeneic hematopoietic stem cell transplantation.
abstract: Chronic graft-versus-host disease (cGVHD) associated morbidity and mortality remain major barriers for successful allogeneic hematopoietic stem cell transplantation (alloHSCT). Currently, no reliable measures are established to monitor cGVHD activity changes for use in clinical trials. The Human Activity Profile (HAP) patient self-report was proposed by the National Institutes of Health (NIH) cGVHD consensus project as an independent measure of patients' functional status that could also indirectly reflect improvement of cGVHD, but that has not been validated in an alloHSCT patient population. One hundred seventy-six patients (median age 44 years [range: 18-72 years] after alloHSCT were evaluated with a German translation of the HAP, the NIH criteria-based cGVHD activity assessment, the Lee cGVHD Symptom-Scale, FACT-BMT, SF36, Berlin Social Support Scale, 24-Item Adjective Measure (24-AM), Hospital Anxiety and Depression Scale, and the NCCN-Distress-Thermometer. Enrollment occurred a median of 286 (range: 85-4003) days after alloHSCT. Follow-up surveys were conducted at 1, 2, 3, 5, 8, and 12 months after the baseline survey. Although 117 patient had cGVHD at time of enrollment (mild n = 33, moderate n = 50, or severe n = 34), 59 patients were included into the study in the absence of cGVHD between days 85 and 395 after transplantation. The maximum activity score (MAS) and adjusted activity score (AAS) of the HAP correlated inversely with grading of cGVHD severity (mild, moderate, or severe) (r = -0.25 for MAS and -0.24 for AAS). Lung manifestations of cGVHD correlated with AAS (r = 0.17), but not with MAS. HAP scores correlated with subscales from other instruments measuring physical domains, especially the physical functioning scale of the SF36. Performance was improved by use of an HSCT-modified HAP scoring system that excluded activities prohibited within the first year after alloHSCT. No significant correlation of the HAP was found with personality, age, sex, symptom burden, or social functioning or social well-being. Moreover, the HAP displayed a higher sensitivity to change of cGVHD activity compared to the SF36 and the FACT-BMT. In addition, steroid myopathy correlated with both HAP scores, but not the SF36. The HAP is a simple and valid questionnaire for the evaluation of the physical activity in patients after alloHSCT, with the advantage of detecting changes in cGVHD status independently of other quality-of-life measures and with a superior sensitivity compared to the SF36.
authors.affiliation: Department of Medical Psychology and Sociology, University of Leipzig, Leipzig, Germany.
authors.forename: Philipp Yorck
authors.initials: PY
authors.lastname: Herzberg
authors.forename: Pia
authors.initials: P
authors.lastname: Heussner
authors.forename: Friederike H A
authors.initials: FH
authors.lastname: Mumm
authors.forename: Melanie
authors.initials: M
authors.lastname: Horak
authors.forename: Inken
authors.initials: I
authors.lastname: Hilgendorf
authors.forename: Stephanie
authors.initials: S
authors.lastname: von Harsdorf
authors.forename: Philipp
authors.initials: P
authors.lastname: Hemmati
authors.forename: Kathrin
authors.initials: K
authors.lastname: Rieger
authors.forename: Hildegard
authors.initials: H
authors.lastname: Greinix
authors.forename: Mathias
authors.initials: M
authors.lastname: Freund
authors.forename: Stephanie J
authors.initials: SJ
authors.lastname: Lee
authors.forename: Ernst
authors.initials: E
authors.lastname: Holler
authors.forename: Daniel
authors.initials: D
authors.lastname: Wolff
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D006086:Graft vs Host Disease / Q000175:diagnosis*; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects* / Q000379:methods; D006801:Humans; D007802:Language; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards; D016896:Treatment Outcome; D055815:Young Adult