Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice

Engelen, Vivian; Haverman, Lotte; Koopman, Hendrik; Schouten - van Meeteren, Netteke; Meijer - van den Bergh, Esther; Vrijmoet-Wiersma, Jantien; van Dijk, Elisabeth Maria; Last, Bob; Detmar, Symone; Grootenhuis, Martha

doi:10.1016/j.pec.2010.02.003

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Volume 81, Issue 2 , Pages 235-244, November 2010

Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice

Vivian Engelen
- Academic Medical Centre/Emma Children's Hospital, Paediatric Psychosocial Department, Amsterdam, The Netherlands
- Corresponding author at: Academic Medical Centre/Emma Children's Hospital, Paediatric Psychosocial Department, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands. Tel.: +31 0 20 5668225; fax: +31 0 20 6091242.
Lotte Haverman
- Academic Medical Centre/Emma Children's Hospital, Paediatric Psychosocial Department, Amsterdam, The Netherlands
Hendrik Koopman
- Leiden University Medical Centre, Medical Psychology, Leiden, The Netherlands
Netteke Schouten - van Meeteren
- Academic Medical Centre/Emma Children's Hospital, Paediatric Oncology Department, Amsterdam, The Netherlands
Esther Meijer - van den Bergh
- Radboud University Medical Centre, Medical Psychology, Paediatric Oncology Department, Nijmegen, The Netherlands
Jantien Vrijmoet-Wiersma
- Leiden University Medical Centre, Medical Psychology, Paediatric Oncology Department, Leiden, The Netherlands
Elisabeth Maria van Dijk
- VU University Medical Center, Medical Psychology, Paediatric Oncology Department, Amsterdam, The Netherlands
Bob Last
- Academic Medical Centre/Emma Children's Hospital, Paediatric Psychosocial Department, Amsterdam, The Netherlands
Symone Detmar
- TNO Prevention and Health, Leiden, The Netherlands
Martha Grootenhuis
- Academic Medical Centre/Emma Children's Hospital, Paediatric Psychosocial Department, Amsterdam, The Netherlands

Received 23 June 2009; received in revised form 12 January 2010; accepted 1 February 2010. published online 02 March 2010.

Abstract

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.

Conclusion

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.

Keywords: Patient reported outcome (PRO), Health related quality of life (HRQOL), Paediatric oncology, Clinical practice, Physician–patient communication, Development and implementation