Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice.
OBJECTIVE
The use of patient reported outcomes (PRO) in routine clinical practice is becoming increasingly common, but there is limited knowledge about the development and implementation of PRO. The objective of the current paper is to provide a thorough description of the development and implementation of a PRO on health related quality of life (HRQOL)--the QLIC-ON PROfile--in clinical paediatric oncology practice.


METHODS
The development of the QLIC-ON PROfile is explained by elucidating important choices: the HRQOL instrument, the professional that uses the QLIC-ON PROfile, the optimal form of HRQOL feedback and whether or not a clinically important difference is reported. The description of the implementation of the QLIC-ON PROfile focuses on the education and commitment of the professional that uses the QLIC-ON PROfile. Study design and outcome measures are also elaborated on.


RESULTS
Important considerations regarding the development and implementation of PRO interventions are reported. These considerations have also resulted in educational material.


CONCLUSIONS
Our study adds to current knowledge of PRO research. This paper can be used as a practical guide for researchers and other professionals, who are interested in setting up PRO interventions in any clinical setting.
Engelen
Vivian
V
Paediatric Psychosocial Department, Academic Medical Centre/Emma Children's Hospital, Amsterdam, The Netherlands. v.engelen@amc.uva.nl
Haverman
Lotte
L
Koopman
Hendrik
H
Schouten-van Meeteren
Netteke
N
Meijer-van den Bergh
Esther
E
Vrijmoet-Wiersma
Jantien
J
van Dijk
Elisabeth Maria
EM
Last
Bob
B
Detmar
Symone
S
Grootenhuis
Martha
M
D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008495:Medical Oncology; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010372:Pediatrics; D010817:Physician-Patient Relations; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life; D012647:Self-Assessment; D011795:Surveys and Questionnaires / Q000592:standards*