Page 75 - Let them speak Towards a patient reported outcome measure set for

Protocol for developing a core PRO set
41. Foster ED, Deardorff A. Open science framework (OSF). Journal of the Medical Library
Association: JMLA. 2017;105(2):203.
42. American Psychiatric Association D, Association AP. Diagnostic and statistical manual of
mental disorders: DSM-5: American psychiatric association Washington, DC; 2013.
43. Temme B, Bikker A, Leeflang C, Groep B. Leidraad groepsbijeenkomsten: B&A Groep; 1999.
44. Jones J, Hunter D. Consensus methods for medical and health services research. BMJ: British
Medical Journal. 1995;311(7001):376.
45. Williams PL, Webb C. The Delphi technique: a methodological discussion. Journal of advanced
nursing. 1994;19(1):180-6.
46. Akins RB, Tolson H, Cole BR. Stability of response characteristics of a Delphi panel: application
of bootstrap data expansion. BMC medical research methodology. 2005;5(1):1-12.
47. Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, Tugwell P. Developing
core outcome sets for clinical trials: issues to consider. Trials. 2012;13(1):1-8.
48. Potter S, Holcombe C, Ward J, Blazeby J, Brookes S, Cawthorn S, et al. Development of a core
outcome set for research and audit studies in reconstructive breast surgery. Journal of British
Surgery. 2015;102(11):1360-71.
49. Blazeby J, Macefield R, Blencowe N, Jacobs M, McNair A, Sprangers M, et al. Core information
set for oesophageal cancer surgery. Journal of British Surgery. 2015;102(8):936-43.
50. Harman NL, Bruce IA, Kirkham JJ, Tierney S, Callery P, O’Brien K, et al. The importance of
integration of stakeholder views in core outcome set development: otitis media with effusion
in children with cleft palate. PloS one. 2015;10(6):e0129514.
51. Prinsen CAC, Mokkink LB, Bouter LM, Alonso J, Patrick DL, de Vet HCW, Terwee CB. COSMIN
guideline for systematic reviews of patient-reported outcome measures. Qual Life Res.
2018;27(5):1147-57.
52. Mokkink LB, Boers M, Van Der Vleuten C, Bouter LM, Alonso J, Patrick DL, et al. COSMIN Risk
of Bias tool to assess the quality of studies on reliability or measurement error of outcome
measurement instruments: a Delphi study. BMC medical research methodology. 2020;20:1-
13.
53. Klaufus LH, Luijten MAJ, Verlinden E, van der Wal MF, Haverman L, Cuijpers P, et al.
Psychometric properties of the Dutch-Flemish PROMIS(®) pediatric item banks Anxiety and
Depressive Symptoms in a general population. Qual Life Res. 2021.
54. Luijten MA, van Litsenburg RR, Terwee CB, Grootenhuis MA, Haverman L. Psychometric
properties of the Patient-Reported Outcomes Measurement Information System (PROMIS®)
pediatric item bank peer relationships in the Dutch general population. Quality of Life Research.
2021:1-10.
55. van Muilekom MM, Teela L, van Oers HA, van Goudoever JB, Grootenhuis MA, Haverman
L. Patients’ and parents’ perspective on the implementation of Patient Reported Outcome
Measures in pediatric clinical practice using the KLIK PROM portal. Quality of Life Research.
2022;31(1):241-54.
56. Teela L, van Muilekom MM, Kooij LH, Gathier AW, van Goudoever JB, Grootenhuis MA, et al.
Clinicians’ perspective on the implemented KLIK PROM portal in clinical practice. Quality of
Life Research. 2021;30(11):3267-77.
57. van Muilekom MM, Teela L, van Oers HA, van Goudoever JB, Grootenhuis MA, Haverman
L. Patients’ and parents’ perspective on the implementation of Patient Reported Outcome
Measures in pediatric clinical practice using the KLIK PROM portal. Quality of Life Research.
2021:1-14.
58. van Eeghen AM, Bruining H, Wolf NI, Bergen AA, Houtkooper RH, van Haelst MM, van Karnebeek
CD. Personalized medicine for rare neurogenetic disorders: can we make it happen? Molecular
Case Studies. 2022;8(2):a006200.
59. Hoytema van Konijnenburg EM, Wortmann SB, Koelewijn MJ, Tseng LA, Houben R, Stöckler-
Ipsiroglu S, et al. Treatable inherited metabolic disorders causing intellectual disability: 2021
review and digital app. Orphanet journal of rare diseases. 2021;16:1-35.
60. Administration USFaD. FDA Patient-Focused Drug Development Guidance Series for
Enhancing the Incorporation of the Patient’s Voice in Medical Product Development and
3
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