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Mapping the Paediatric Quality of Life Inventory (PedsQL™) Generic Core Scales onto the Child Health Utility Index–9 Dimension (CHU-9D) Score for Economic Evaluation in Children

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A Letter to the Editor to this article was published on 20 June 2018

Abstract

Background

The Paediatric Quality of Life Inventory (PedsQL™) questionnaire is a widely used, generic instrument designed for measuring health-related quality of life (HRQoL); however, it is not preference-based and therefore not suitable for cost–utility analysis. The Child Health Utility Index–9 Dimension (CHU-9D), however, is a preference-based instrument that has been primarily developed to support cost–utility analysis.

Objective

This paper presents a method for estimating CHU-9D index scores from responses to the PedsQL™ using data from a randomised controlled trial of prednisolone therapy for treatment of childhood corticosteroid-sensitive nephrotic syndrome.

Methods

HRQoL data were collected from children at randomisation, week 16, and months 12, 18, 24, 36 and 48. Observations on children aged 5 years and older were pooled across all data collection timepoints and were then randomised into an estimation (n = 279) and validation (n = 284) sample. A number of models were developed using the estimation data before internal validation. The best model was chosen using multi-stage selection criteria.

Results

Most of the models developed accurately predicted the CHU-9D mean index score. The best performing model was a generalised linear model (mean absolute error = 0.0408; mean square error = 0.0035). The proportion of index scores deviating from the observed scores by <  0.03 was 53%.

Conclusions

The mapping algorithm provides an empirical tool for estimating CHU-9D index scores and for conducting cost–utility analyses within clinical studies that have only collected PedsQL™ data. It is valid for children aged 5 years or older. Caution should be exercised when using this with children younger than 5 years, older adolescents (>  13 years) or patient groups with particularly poor quality of life.

ISRCTN Registry No

16645249

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Acknowledgements

The PREDNOS investigators would like to thank the National Institute for Health Research (NIHR) Health Technology Assessment Programme for funding this study and Kidney Research UK and Kid’s Kidney Research, who funded the pilot study. We thank all the parents and participants who agreed to enter the study, the investigators who contributed to the trial and the NIHR Clinical Research Network: Children for their support with study set-up and recruitment. We also thank the Service Users Group from the UK Nephrotic Syndrome Trust (NeST) and the Renal Patient Support Group, in particular Mrs Wendy Cook, Mrs Samantha Davies-Abbott and Dr Shahid Muhammad, who provided valuable input regarding trial design and conduct and reviewed the plain English summary. The support of the British Association for Paediatric Nephrology and the Royal College of Paediatrics and Child Health is much appreciated. We also value and appreciate constructive comments received at the Health Economists’ Study Group meeting in January 2017. We thank Stavros Petrous in particular, who discussed an earlier version of this paper at the meeting.

List of Trial Co-Investigators: Abertawe Bro Morgannwg University Health Board, Morriston Hospital: Dr M. James-Ellison, H.M. Williams. Airedale NHS Foundation Trust, Airedale General Hospital: Dr P. Bala. Alder Hey Children’s NHS Foundation Trust, Alder Hey Children’s Hospital: Dr C. Jones, Dr R. Holt, Dr H. Morgan, E. Bailey, L. Flanagan. Ashford and St Peter’s Hospitals NHS Foundation Trust, St Peter’s Hospital: Dr T. Bhatti, Dr S. Bahl, L. Walding. Barnsley Hospital NHS Foundation Trust, Barnsley Hospital: Dr E. Gouta, Dr R. Gupta, Dr D. Kerrin. Barts Health NHS Trust, Newham University Hospital, The Royal London Hospital, Whipps Cross University Hospital: Dr A. Parikh, Dr A. Duthie, Dr N. Gadong, Dr B. Anjum, B. Crone, H. De Jesus, I. Lancoma-Malcolm, N. Plaatjies. Basildon and Thurrock University Hospitals NHS Foundation Trust, Basildon University Hospital: Dr K. Khalifa. Belfast Health and Social Care Trust, The Royal Belfast Hospital for Sick Children: Dr K. McKeever, Dr G. McCall, P. McCreesh, M. Millar. Betsi Cadwaladr University Health Board, Glan Clwyd Hospital, Ysbyty Gwynedd: Dr M. Hesseling, Dr M. Kubwalo, A. Bolger, L. Hobson. Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham Children’s Hospital: Dr D. Milford, Dr L. Kerecuk, C. Norton, N. Rahania, H. Williamson, F. Bibi, T. Gazeley, J. Williams. Bolton NHS Foundation Trust, Royal Bolton Hospital: Dr F. Watson, C. Abbot. Bradford Teaching Hospitals NHS Foundation Trust, Bradford Royal Infirmary: Dr S. Frazer, L. Akeroyd. Burton Hospitals NHS Foundation Trust, Queen’s Hospital: Dr M. Ahmed, Dr D. Muogbo, C. Backhouse, S. Boswell. Calderdale and Huddersfield NHS Foundation Trust, Calderdale Royal Hospital, Huddersfield Royal Infirmary: Dr E. Crosbie. Cambridge University Hospitals NHS Foundation Trust, Addenbrooke’s Hospital: Dr P. Heinz, Dr B. Ulbrich. Cardiff and Vales University Health Board, University Hospital of Wales: Dr S. Hegde, P. Jones. Central Manchester University Hospitals NHS Foundation Trust, Royal Manchester Children’s Hospital: Professor N.J.A. Webb, Dr R. Lennon, Dr M. Lewis, Dr N. Plant, Dr M. Shenoy, Dr S. Sukthankar, C. Bryant, S. Douglas, H. Sumner, J. Howell. Chelsea and Westminster Hospital NHS Foundation Trust, West Middlesex University Hospital: Dr N. Elhadi, I. Bishton. Chesterfield Royal Hospital NHS Foundation Trust, Chesterfield Royal Hospital: Dr O. Ayonrinde. Colchester Hospital University NHS Foundation Trust, Colchester General Hospital: Dr A. Turner, Dr J. Campbell, A. Turner. Countess of Chester Hospital NHS Foundation Trust, Countess of Chester Hospital: Dr J. Gibbs, Dr E. Newby, Dr S. Saladi, Dr A. Timmis, C. Burchett, S. De-Beger. County Durham and Darlington NHS Foundation Trust, Darlington Memorial Hospital, University Hospital of North Durham: Dr A. Nair, Dr A. Banerjee. Croydon Health Services NHS Trust. Croydon University Hospital: Dr T. Fenton. Dartford and Gravesham NHS Trust, Darent Valley Hospital: Dr S. D’Costa. Derby Teaching Hospitals NHS Foundation Trust, Royal Derby Hospital: Dr R. Bowker, C. Smith, V. Unsworth. Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust, Bassetlaw Hospital, Doncaster Royal Infirmary: Dr A. Natarajan, Dr L. Men Wong. Dorset County Hospital NHS Foundation Trust, Dorset County Hospital: Dr P. Parslow. East and North Hertfordshire NHS Trust, Lister Hospital: Dr V. Kandala, Dr S. Imran. East Cheshire NHS Trust, Macclesfield District General Hospital: Dr S. Chandrasekaran, Dr S.-A. Ho, Dr I. Losa, Dr K. Marinaki, N. Keenan, J. Nichols, J. Shippey. East Lancashire Hospitals NHS Trust, Royal Blackburn Hospital: Dr J. Iqbal. Epsom and St Helier University Hospitals NHS Trust, Epsom Hospital: Dr K. Watts. Frimley Health NHS Foundation Trust, Wexham Park Hospital: Dr A. Yannoulias, Dr Z. Huma. Gloucestershire Hospitals NHS Foundation Trust, Gloucestershire Royal Hospital: Dr A. Sambo, Dr L. Jadresic, S. Beames. Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street Hospital: Dr D. Bockenhauer, Dr D. Hothi. Great Western Hospitals NHS Foundation Trust, Great Western Hospital: Dr N. West, Dr H. Price. Guy’s and St Thomas’ NHS Foundation Trust, Evelina London Children’s Hospital: Dr M. Sinha, E. Neal, E. Reus, P. Sofocleous. Harrogate and District NHS Foundation Trust, Harrogate District Hospital: Dr I. Cannings. Homerton University Hospital NHS Foundation Trust, Homerton University Hospital: Dr R. Sood. Hull and East Yorkshire Hospitals NHS Trust, Hull Royal Infirmary: Dr V. Mathew, Dr E. Sharif. Kettering General Hospital NHS Foundation Trust, Kettering General Hospital: Dr H. Bilolikar, S. White. Kingston Hospital NHS Foundation Trust, Kingston Hospital: Dr T. Ayeni. Lancashire Teaching Hospitals NHS Foundation Trust, Royal Preston Hospital: Dr R. O’Connor. Luton and Dunstable Hospital NHS Foundation Trust, Luton and Dunstable University Hospital: Dr M. Eisenhut, Dr T. Rajkowski, S. Clough, R. Dixon, K. Reep. Maidstone and Tunbridge Wells NHS Trust, Maidstone Hospital, Tunbridge Wells Hospital: Dr K. Balasubramanian, Dr H. Kisat. Medway NHS Foundation Trust, Medway Maritime Hospital: Dr J. Cansick. Mid Cheshire Hospitals NHS Foundation, Trust Leighton Hospital: Dr J. Ellison, S. Smith, S. Tapscott. NHS Ayrshire and Arran, University Hospital Crosshouse: Dr B. Oates, C. Bell. NHS Dumfries & Galloway, Dumfries and Galloway Royal Infirmary: Dr R. Shyam. NHS Fife, Victoria Hospital: Dr E. Menzies, P. Cruickshanks. NHS Forth Valley, Forth Valley Royal Hospital: Dr J. Schulga. NHS Grampian, Royal Aberdeen Children’s Hospital: Dr C. Oxley. NHS Greater Glasgow and Clyde, Royal Alexandra Hospital, Royal Hospital for Children: Dr D. Hughes, Dr A. Sharma, Dr L. Krischock, Dr J. Houston, D. Carroll, S. Goddard, E. Waxman. NHS Highland, Raigmore Hospital: Dr A. Webb. NHS Lanarkshire, Wishaw General Hospital: Dr T.T. Saing, Dr C. Cunningham, A. Brown, V. Causer. NHS Lothian, Royal Hospital for Sick Children: Dr D. Hughes, Dr S. Taheri, A. Macdonald, T. McGregor, E. Carson, K. Riding. Norfolk and Norwich University Hospitals NHS Foundation Trust, Norfolk and Norwich University Hospital: Dr N. Thalange, Dr C. Upton, L. Fear. North Cumbria University Hospitals NHS Trust, Cumberland Infirmary: Dr G. Jones. North Tees and Hartlepool NHS Foundation Trust, University Hospital of North Tees: Dr V. Tandle, G. Osborne. North West Anglia NHS Foundation Trust, Peterborough City Hospital: Dr M. Aslam. Northampton General Hospital NHS Trust, Northampton General Hospital: Dr I. Norton. Northern Devon Healthcare NHS Trust, North Devon District Hospital: Dr D. Dalton, Dr K. Thattakkat. Northern Lincolnshire and Goole NHS Foundation Trust, Diana, Princess of Wales Hospital: Dr B. Wobi, Dr B. Etuwewe, T. Walker, J. Browning, M. Carling, E. Killingbeck, D. Ryan, C. Tsvangirai-Mahachi. Nottingham University Hospitals NHS Trust, Nottingham Children’s Hospital: Dr A. Lunn, Dr M. Christian. Oxford University Hospitals NHS Foundation Trust, John Radcliffe Hospital: Dr J. Craze. Plymouth Hospitals NHS Trust, Derriford Hospital: Dr C. Derry, Dr R. Jones, S.-J. Sharman. Poole Hospital NHS Foundation Trust, Poole Hospital: Dr S. Wadams, H. Barham, S. Power. Portsmouth Hospitals NHS Trust, Queen Alexandra Hospital: Dr C. Tuffrey, Dr S. Birch, Dr J. Scanlan, A. Gribbin, S. McCready. Royal Berkshire NHS Foundation Trust, Royal Berkshire Hospital: Dr A. Gordon, Dr G. Boden, S. Hallett. Royal Cornwall Hospitals NHS Trust, Royal Cornwall Hospital: Dr C. Williams, G. Craig. Royal Devon and Exeter Hospital NHS Foundation Trust, Royal Devon and Exeter-Wonford Hospital: Dr H. Cottis, Dr V. Lewis, Dr C. McMillan, Dr N. Osborne, C. Harrill, S. Wilkins. Royal Free London NHS Foundation Trust, Royal Free Hospital (non-recruiting centre): Professor R. Kleta. Royal United Hospitals Bath NHS Foundation Trust, Royal United Hospital: Dr L. Diskin, Dr A. Billson, A. Barratt. Sheffield Children’s NHS Foundation Trust, Sheffield Children’s Hospital: Dr G. Moss. Sherwood Forest Hospitals NHS Foundation Trust, King’s Mill Hospital: Dr S. Rhodes, A. Coupe, C. Moulds. Southern Health and Social Care Trust, Craigavon Area Hospital: M. Smith, S. Gilpin, J. Ratcliffe. Southport and Ormskirk Hospital NHS Trust, Ormskirk and District General Hospital: Dr S. Gardner. St Helens and Knowsley Teaching Hospitals NHS Trust, Whiston Hospital: Dr L. Chilukuri. Stockport NHS Foundation Trust, Stepping Hill Hospital: Dr C. Cooper, S. Bennett. Tameside and Glossop Integrated Care NHS Foundation Trust, Tameside Hospital: Dr A. Petkar, Dr A. Ul-Haq, G. Waring. Taunton and Somerset NHS Foundation Trust, Musgrove Park Hospital: Dr R. Mann, N. Thorne. The Dudley Group NHS Foundation Trust, Russells Hall Hospital: Dr Z. Ibrahim. The Ipswich Hospital NHS Trust, Ipswich Hospital: Dr J. Buck, D. Beeby. The Leeds Teaching Hospitals NHS Trust, Leeds General Infirmary: Dr E. Finlay, M. Allen, R. Mottram. The Mid Yorkshire Hospitals NHS Trust, Dewsbury and District Hospital, Pinderfields Hospital: Dr K. Deakin. The Newcastle upon Tyne Hospitals NHS Foundation Trust, Great North Children’s Hospital: Dr S. Johnson, Dr Y. Tse, K. Bell, D. Chisholm. The Pennine Acute Hospitals NHS Trust, North Manchester General Hospital, The Royal Oldham Hospital: Dr B. Padmakumar, Dr T. Magadevan (clinician, North Manchester General Hospital). The Queen Elizabeth Hospital King’s Lynn NHS Foundation Trust, Queen Elizabeth Hospital: Dr M. Hughes, Dr S. Rubin, A. Frary. The Rotherham NHS Foundation Trust, Rotherham Hospital: Dr S. Suri, Dr S. El-Refee, Dr C. Harrison. The Royal Wolverhampton NHS Trust, Cannock Chase Hospital, New Cross Hospital: Dr K. Davies, S. Kempson. The Shrewsbury and Telford Hospital NHS Trust, Princess Royal Hospital, Royal Shrewsbury Hospital: Dr N. Ayub. United Lincolnshire Hospitals NHS Trust, Lincoln County Hospital, Pilgrim Hospital: Dr S. Mukhopadhyay, Dr M. Crawford, Dr M. Pervez, Dr D. Thomas. University Hospital of South Manchester NHS Foundation Trust, Wythenshawe Hospital: Dr G. Vemuri, Dr R. Puttha, Dr A. Setti, Dr F. Al-Zidgali, C. Holliday, L. Woodhead. University Hospital Southampton NHS Foundation Trust, Southampton Children’s Hospital: R. Gilbert. University Hospitals Bristol NHS Foundation Trust, Bristol Royal Hospital for Children: Professor M. Saleem, M. Ross, H. Smee. University Hospitals Coventry and Warwickshire NHS Trust, University Hospital: Dr N. Coad. University Hospitals of Leicester NHS Trust, Leicester Royal Infirmary: Dr A. Hall, Dr P. Houtman. University Hospitals of Morecambe Bay NHS Foundation Trust, Furness General Hospital, Royal Lancaster Infirmary: Dr N.P. Nardeosingh, Dr M.-Y. Formosa, Dr P. Ward. University Hospitals of North Midlands NHS Trust, County Hospital, Royal Stoke University Hospital: Dr Y. Slater, Dr S. Raja, Dr K. Tewary, Dr S. Shankar. Warrington and Halton Hospitals NHS Foundation Trust, Warrington Hospital: Dr R.D. Webb, N. Rogers. West Suffolk NHS Foundation Trust, West Suffolk Hospital: Dr R. Lakshman, Dr K. Cesar. Western Health and Social Care Trust, Altnagelvin Area Hospital: Dr D. Armstrong, J. Brown. Western Sussex Hospitals NHS Foundation Trust, St Richard’s Hospital, Worthing Hospital: Dr N. Brennan, Dr S. Nicholls. Wirral University Teaching Hospital NHS Foundation Trust, Arrowe Park Hospital: Dr E. Breen, S. Hughes, L. Lewis. Worcestershire Acute Hospitals NHS Trust, Alexandra Hospital, Worcestershire Royal Hospital: Dr J. Scanlon, Dr M. Ahmed, Dr A. Gallagher. Wrightington, Wigan and Leigh NHS Foundation Trust, Royal Albert Edward Infirmary: Dr V. Joshi, Dr M. Mukherjee, Dr S. Velmurugan. Wye Valley NHS Trust, The County Hospital: Dr S. Meyrick. Yeovil District Hospital NHS Foundation Trust, Yeovil District Hospital: Dr M. Fernando, Dr C. Zaborowski, A. Stannett. York Teaching Hospital NHS Foundation Trust, Scarborough Hospital, The York Hospital: Dr U. Venkatesh, Dr G. Millman, S. Dyer, K. Elliot. University of Manchester (non-recruiting centre): Professor D. Ray.

Funding

This study was funded by the NIHR Health Technology Assessment (HTA) programme (HTA 08/53/31).

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Contributions

Tosin Lambe (TL): conducted the mapping analysis and wrote the paper. Emma Frew (EF): developed the mapping protocol, supervised the mapping analysis and wrote the paper. Natalie J. Ives (NJI): supervised the statistical aspects of the study and edited the paper. Rebecca L. Woolley (RLW): supervised the statistical aspects and edited the paper. Carole Cummins (CC): major input into the trial design that generated the data for this mapping study, and edited the paper. Elizabeth A. Brettell (EAB): overall co-ordination, management and oversight of the PREDNOS study that generated the data for this mapping paper and edited the paper. Emma N. Barsoum (ENB): co-ordination of the PREDNOS trial, significant input into the study set-up, monitoring and ensuring execution of the PREDNOS study that generated data for this mapping paper, and edited this paper. Professor Nicholas J.A. Webb (NJAW): Chief Investigator of the PREDNOS study, led the protocol design, recruited participants and edited this mapping paper.

Corresponding author

Correspondence to Emma Frew.

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Ethical Approval

The study was approved by the North West–GM Central Research Ethics Committee (reference: 12/NW/0766).

Department of Health Disclaimer

The views expressed are those of the authors and not necessarily those of the National Health Service (NHS), NIHR or the Department of Health.

Conflict of Interest

NJAW has served on Advisory Boards within the past 5 years for Abbvie, Alexion, AMAG, Astellas, Raptor, Takeda and UCB. These have been related to the design and conduct of early-phase trials in childhood kidney disease. None has been related to the treatment of corticosteroid-sensitive nephrotic syndrome. TL, EF, NJI, RLW, EAB, ENB, and CC declare no conflict of interest.

Informed Consent

Written informed consent was obtained from parents/guardians of participants and written assent was obtained from participants of appropriate age.

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Lambe, T., Frew, E., Ives, N.J. et al. Mapping the Paediatric Quality of Life Inventory (PedsQL™) Generic Core Scales onto the Child Health Utility Index–9 Dimension (CHU-9D) Score for Economic Evaluation in Children. PharmacoEconomics 36, 451–465 (2018). https://doi.org/10.1007/s40273-017-0600-7

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