Citations

If you wish to read more about studies that have used the PARCA-R questionnaire, or to review clinical guidelines in which use of the PARCA-R is recommended, please see the list below.

You can also download the publication list (PDF, 230KB).

A) PARCA-R Technical and Interpretive Manual

• Johnson S, Bountziouka V, Linsell L, Brocklehurst P, Marlow N, Wolke D, Manktelow B. Parent Report of Children’s Abilities – Revised (PARCA-R). Technical and Interpretive Manual. University of Leicester, Leicester, 2019.

•  Bountziouka V, Johnson S, on behalf of the PARCA-R Study Group. Resources for obtaining PARCA-R standard scores for large data sets: a user guide. University of Leicester, Leicester, 2022.

Download a free copy of the PARCA-R manual and associated resources.

B) PARCA-R Validation studies

• Blaggan S, Guy A, Boyle EM, Spata E, Manktelow BN, Wolke D, Johnson S. A parent questionnaire for developmental screening in infants born late and moderately preterm. Pediatrics 2014;134(1):e55-62. doi: 10.1542/peds.2014-0266
• Cuttini M, Ferrante P, Mirante N, Chiandotto V, Fertz M, Dall'Oglio AM, Coletti MF, Johnson S. Cognitive assessment of very preterm infants at 2-year corrected age: performance of the Italian version of the PARCA-R parent questionnaire. Early Human Development 2012;88(3):159-63. doi: 10.1016/j.earlhumdev.2011.07.022
• Johnson S, Marlow N, Wolke D, Davidson L, Marston L, O’Hare A, Peacock J & Schulte J. Validation of a parent report measure of cognitive development for very preterm infants. Developmental Medicine and Child Neurology 2004;46(6):389-97. doi: 10.1017/s0012162204000635
• Johnson S, Wolke D, Marlow N; Preterm Infant Parenting Study Group. Developmental assessment of preterm infants at 2 years: validity of parent reports. Develo pmntal Medicine and Child Neurology 2008;50(1):58-62. doi: 10.1111/j.1469-8749.2007.02010.x
• Martin AJ, Darlow BA, Salt A, Hague W, Sebastian L, Mann K, et al. Identification of infants with major cognitive delay using parental report. Developmental Medicine and Child Neurology 2012;54(3):254-259. doi: 10.1111/j.1469-8749.2011.04161.x
• Martin AJ, Darlow BA, Salt A, Hague W, Sebastian L, McNeill N, Tarnow-Mordi W. Performance of the Parent Report of Children's Abilities-Revised (PARCA-R) versus the Bayley Scales of Infant Development III. Archives of Disease in Childhood 2013;98(12):955-8. doi: 10.1136/archdischild-2012-303288
• Picotti E, Bechtel N, Latal B, Borradori-Tolsa C, Bickle-Graz M, Grunt S, Johnson S, Wolke D, Natalucci G. Performance of the German version of the PARCA-R questionnaire as a developmental screening tool in two-year-old very preterm infants. PLOS ONE 2020;15(9):e0236289. doi: 10.1371/journal.pone.0236289
• Vanhaesebrouck S, Theyskens C, Vanhole C, Allegaert K, Naulaers G, de Zegher F, Daniëls H. Cognitive assessment of very low birth weight infants using the Dutch version of the PARCA-R parent questionnaire. Early Human Development 2014;90(12):897-900. doi: 10.1016/j.earlhumdev.2014.10.004

C) PARCA-R Standardisation

• Johnson S, Bountziouka V, Brocklehurst P, Linsell L, Marlow N, Wolke D, Manktelow BN. Standardisation of the Parent Report of Children’s Abilities-Revised (PARCA-R): a norm-referenced assessment of cognitive and language development at age 2 years. The Lancet Child Adolescent Health 2019;3(1):709-712. doi: 10.1016/S2352-4642(19)30189-0

D) Studies that have used the PARCA-R as an outcome measure

• Beardmore-Gray A, Greenland M, Linsell L, Juszczak E, Hardy P, Placzek A, Hunter R, Sparkes J, Green M, Shennan A, Marlow N, Chappell LC, PHOENIX Study Group. Two-year follow-up of infant and maternal outcomes after planned early delivery or expectant management for late preterm pre-eclampsia (PHOENIX): a randomised controlled trial. British Journal of Obstetrics and Gynaecology 2022;129(10):1654-1663. doi: 10.1111/1471-0528.17167
• Brocklehurst P, Field D, Greene K, Juszczak E, Kenyon S, Linsell L, Mabey C, Newburn M, Plachcinski R, Quigley M, Steer P, Schroeder L, Rivero-Arias O. Computerised interpretation of the fetal heart rate during labour: a randomised controlled trial (INFANT). NIHR Health Technology Assessment 2018;22(9):1-186. doi: 10.3310/hta22090
• Brocklehurst P, Farrell B, King A, Juszczak E, Darlow B, Haque K, Salt A, INFANT Collaborative Group. Computerised interpretation of fetal heart rate during labour (INFANT): a randomised controlled trial. Lancet 2017;389(10080):1719-1729. doi: 10.1016/S0140-6736(17)30568-8
• Chappell LC, Brocklehurst P, Green M, Hardy P, Hunter R, Beardmore-Gray A, Bowler U, Brockbank A, Chiocchia V, Cox A, Duhig K, Fleminger J, Gill C, Greenland M, Hendy E, Kennedy A, Leeson P, Linsell L, McCarthy FP, O'Driscoll J, Placzek A, Poston L, Robson S, Rushby P, Sandall J, Scholtz L, Seed PT, Sparkes J, Stanbury K, Tohill S, Thilaganathan B, Townend J, Juszczak E, Marlow N, Shennan A. Planned delivery for pre-eclampsia between 34 and 37 weeks of gestation: the PHOENIX RCT. NIHR Health Technology Assessment 2022. doi: 10.3310/CWWH0622
• Dargaville PA, Kamlin COF, Orsini F, Wang X, de Paoli AG, Kutman HGK, Cetinkaya M, Kornhauser-Cerar L, Derrick M, Ozkan H, Hulzebos CV, Schmolzer GM, Aiyaooan A, Lemyre B, Kuo Sheree, Rajadurai VS, O’Shea J, Biniwale M, Ramanathan R, Kushnir A, Bader D, Thomas MR, Chakraborty M, Buksh MJ, Bhatia R, Sullivan CL, Shinwell ES, Dyson A, Barker DP, Kugelman A, Donovan TJ, Goss KCW, Tauscher MK, Murthy V, Ali SKM, Clark HW, Soll RF, Johnson S, Cheong JLY, Carlin JB, Davis PG for the OPTIMIST-A Trial Investigators. Two-year outcomes after minimally invasive surfactant therapy in preterm infants: Follow-up of the OPTIMIST-A randomized clinical trial. JAMA 2023 2023;330(11):1054-1063. doi: 10.1001/jama.2023.15694
• Dorling J, Abbott J, Berrington J, Bosiak B, Bowler U, Boyle E, Embleton N, Hewer O, Johnson S, Juszczak E, Leaf A, Linsell L, McCormick K, McGuire W, Omar O, Partlett C, Patel M, Roberts T, Stenson B, Townend J for the SIFT Investigators Group. Controlled Trial of Two Incremental Milk Feeding Rates in Preterm Infants. New England Journal of Medicine 2019;381(15):1434-1443. doi: 10.1056/NEJMoa1816654
• Draper ES, Zeitlin J, Manktelow BN, Piedvache A, Cuttini M, Bonamy AE, Maier R, Koopman-Esseboom C, Gadzinowski J, Boerch K, van Reempts P, Varendi H, Johnson S on behalf of the EPICE group. EPICE cohort: two-year neurodevelopmental outcomes after very preterm birth. Archives of Disease in Childhood Fetal and Neonatal Edition 2020;105:350-356. doi: 10.1136/archdischild-2019-317418
• Edwards D, Redshaw M, Kennea et al. Effect of MRI on preterm infants and their families: a randomised trial with nested diagnostic and economic evaluation. Arch Dis Child Fetal Neonatal Ed 2018;103:F15–F21. doi: 10.1136/archdischild-2017-313102
• Field D, Juszczak E, Linsell L, Azzopardi D, Cowan F, Marlow N, et al. Neonatal ECMO study of temperature (NEST): a randomized controlled trial. Pediatrics 2013;132(5):e1247-1256. doi: 10.1542/peds.2013-1754
• Field D, Spata E, Davies T, Manktelow B, Johnson S, Boyle E, Draper ES. Evaluation of the use of a parent questionnaire to provide later health status data: the PANDA study. Archives of Disease in Childhood Fetal and Neonatal Edition 2016;101(4):F304-8. doi: 10.1136/archdischild-2015-309247
• Gupta S, Juszczak E, Hardy P, Subhedar N, Wylie J, Kelsall W, Sinha S, Johnson S, Roberts T, Hutchison E, Pepperell J, Linsell L, Bell JL, Stanbury K, Laube M, Edwards C, Field D on behalf of The Baby-OSCAR Collaborative Group. Study protocol: baby-OSCAR trial: Outcome after Selective early treatment for Closure of patent ductus Arteriosus in preterm babies, a multicentre, masked, randomised placebo-controlled parallel group trial. BMC Pediatrics 2021;21:100. doi: 10.1186/s12887-021-02558-7
• Hodgetts-Morton V, Hewitt CA, Jones L, Leighton L, Pilarski N, Molloy E, Honshaw K, Norman J, Waugh J, Stock S, Thornton J, Toozs-Hobson P, Johnston T, Coomarasamy A, Thangaratinam S, Mol B, Pajkrt E, Marlow N, Roberts T, Middleton L, Brocklehurst P, Morris K. C-STITCH2: emergency cervical cerclage to prevent miscarriage and preterm birth – study protocol for a randomised controlled trial. Trials 2021;22:529. doi: 10.1186/s13063-021-05464-6
• INIS Collaborative Group. Treatment of neonatal sepsis with intravenous immune globulin. New England Journal of Medicine 2011;365(13):1201-11. doi: 10.1056/NEJMoa1100441
• Johnson S, Evans TA, Draper ES, Field DJ, Manktelow BN, Marlow N, Matthews R, Petrou S, Seaton SE, Smith LK, Boyle EM. Neurodevelopmental outcomes following late and moderate prematurity: a population-based cohort study. Archives of Disease in Childhood Fetal and Neonatal Edition 2015;100(4):F301-8. doi: 10.1136/archdischild-2014-307684
• Johnson S, Matthews R, Draper ES, Field DJ, Manktelow BN, Marlow N, Smith LK, Boyle EM. Early Emergence of Delayed Social Competence in Infants Born Late and Moderately Preterm. Journal of Developmental and Behavioral Pediatrics 2015;36(9):690-9. doi: 10.1097/DBP.0000000000000222
• Johnson S, Waheed G, Manktelow BN, Field D, Marlow N, Draper ES, Boyle EM. Differentiating the preterm phenotype: Distinct profiles of cognitive and behavioral development following late and moderately preterm birth. Journal of Pediatrics 2018;193:85-92. doi: 10.1016/j.jpeds.2017.10.002
• Marlow N, Greenough A, Peacock JL, Marston L, Limb ES, Johnson AH, et al. Randomised trial of high frequency oscillatory ventilation or conventional ventilation in babies of gestational age 28 weeks or less: respiratory and neurological outcomes at 2 years. Archives of Disease in Childhood Fetal and Neonatal Edition 2006;91(5):F320-326. doi: 10.1136/adc.2005.079632
• Marlow N, Morris T, Brocklehurst P, Carr R, Cowan F, Patel N, Petrou S, Redshaw M, Modi N, Doré CJ. A randomised trial of granulocyte-macrophage colony-stimulating factor for neonatal sepsis: childhood outcomes at 5 years. Archives of Disease in Childhood Fetal and Neonatal Edition 2015;100(4):F320-6. doi: 10.1136/archdischild-2014-307410
• Marlow N, Morris T, Brocklehurst P, Carr R, Cowan FM, Patel N, et al. A randomised trial of granulocyte-macrophage colony-stimulating factor for neonatal sepsis: outcomes at 2 years. Archives of Disease in Childhood Fetal and Neonatal Edition 2013;98(1):F46-53. doi: 10.1136/archdischild-2014-307410
• Moore CM, D’Amore A, Fustolo-Gunnink S, et al. Two-year outcomes following a randomised platelet transfusion trial in preterm infants. Archives of Disease in Childhood Fetal and Neonatal EditionPublished Online First: 2023;108:F452–F457. doi:10.1136/archdischild-2022-324915

• Murray S, Thompson J, Townsend RC, Deidda M, Boyd KA, Norman JE, Norrie J, Boardman JP, Luyt K, Khalil A, Bick D, Reed K, Denton J, Fenwick N, Keerie C, Reynolds R, Stock SJ. Randomised placebo-controlled trial of antenatal corticosteroids for planned birth in twins (STOPPIT-3): study protocol. BMJ Open 2024;14:e078778. doi:10.1136/bmjopen-2023-078778

• Mylrea-Foley B, Thornton J, Mullins E, Marlow N, Hecher K, Ammari C, Arabin B, Berger A, Bergman E, Bhide A, Bilardo C, Binder J, Breeze A, Brodski J, Calda P, Cannings-John R, Cerny A, Cesari E, Cetin I, Dall’Asta A, Diemert A, Ebbing C, Eggebo T, Fantasia I, Ferrazzi E, Frusca T, Ghi T, Goodier J, Greimel P, Gyselaers W, Hassan W, von Kaisenberg C, Kholin A, Klaritsch P, Krofta L, Lindgren P, Lobmaier S, Marsal K, Maruotti GM, Mecacci F, Myklestad K, Napolitano R, Ostermayer E, Papageorghiou A, Potter C, Prefumo F, Raio L, Richter J, Sande RK, Schlembach D, Schleubner E, Stampalija T, Thilganathan B, Townson J, Valensise H, Visser GH, Wee L, Wolf H, Lees CC, TRUFFLE 2 Collaborators List. Perinatal and 2-year neurodevelopmental outcome in late preterm fetal compromise: the TRUFFLE 2 randomised trial protocol. BMJ Open 2022;12(4):e055543. doi: 10.1136/bmjopen-2021-055543

• Vestager ML, Hansen ML, Rasmussen MI, Hahn GH, Hyttel-Sorensen S, Pellicer A, Heuchan AM, Hagmann C, Dempsey E, Dimitriou G, Pichler G, Naulaers G, Fuchs H, Tkaczyk J, Mintzer J, Fumagalli M, Nesargi S, Fredly S, Szczapa T, Gluud C, Jakobsen JC, Greisen G. The effects of cerebral oximetry in mechanically ventilated newborns: a protocol for the SafeBoosC-IIIV randomised clinical trial. Trials 2023;24(1):696. doi: 10.1186/s13063-023-07699-x

E)  Recommendations in clinical guidelines and standards of care

• British Association of Neonatal Neurodevelopmental Follow up. Guidance for phone /video follow up clinics during Covid19 Pandemic. London: British Association of Perinatal Medicine; March 2020.
• British Association of Perinatal Medicine. Report of a BAPM/RCPCH Working Group: Classification of health status at 2 years as a perinatal outcome. London: British Association of Perinatal Medicine; 2008.
• European Foundation for the Care of Newborn Infants (EFCNI). European Standards of Care for Newborn Health. Germany 2018.
• European Foundation for the Care of Newborn Infants (EFCNI). Caring for Tomorrow. EFCNI White Paper on Maternal and Newborn Health and Aftercare Services. Germany 2012.
• International Consortium for Health Outcomes Measurement (ICHOM). Preterm and Hospitalized Newborn Health Data Collection Referecne Guide. Version 1.0.0. International Consortium for Health Outcomes Measurement, August 2020.
• Kallioinen M, Eadon H, Murphy MS, Baird G on behalf of the Guideline Committee. Developmental follow-up of children and young people born preterm: summary of NICE guidance. BMJ 2017;358:j3514. doi: 10.1136/bmj.j3514.
• National Institute for Health and Care Excellence (NICE). Developmental follow-up of children and young people born preterm. Quality Standard (QS169). NICE 2018.
• National Institute for Health and Care Excellence (NICE). Developmental follow-up of children and young people born preterm. Full Guideline (NG-72). NICE 2017.
• Schouten E, Haupt J, Ramirez J, Sillett N, Nielsen C, Clarke A, Matkin L, Joseph A, Been J, Bolanos Gonzalez I, Cheong J, Daly M, Kirpalani H, Mader S, Maria A, Matijasevich A, Mittal R, Mutesu-Kapembwa K, Vavouraki E, Webbe J, Wolke D, Zeitlin J, Flemmer A. Standardized Outcome Measures for Preterm and Hospitalized Neonates: An ICHOM Standard Set. Neonatology 2022;119(4):443-454. doi: 10.1159/000522318.
• Preterm follow-up guideline development group. Guideline for Growth, Health and Developmental Follow-Up for Children Born Very Preterm. Melbourne: Centre of Research Excellence in Newborn Medicine; 2024.

F)  Other publications in which the PARCA-R is cited

• Balasubramanian H, Ahmed J, Ananthan A, Srinivasan L, Mohan D. Comparison of parent or caregiver-competed development screening tools with Bayley Scales of Infant Development: a systematic review and meta-analysis. Archives of Disease in Childhood 2024;109(9):759-766. doi: 10.1136/archdischild-2023-326771.
• Bountziouka V, Johnson S, Manktelow BN. Methods for constructing normalised reference scores: an application for assessing child development at 24 months of age. Multivariate Behavioral Research 2023;5:894-910. doi: 10.1080/00273171.2022.2142189
• Bradshaw LE, Pushpa-Rajah, Dorling J, Mitchell EJ, Duley L and the CORD Pilot Trial Collaborative Group. Cord pilot trial: update to randomised trial protocol. Trials 2015;16:407. doi:10.1186/s13063-015-0936-2
• European Foundation for the Care of Newborn Infants. Clinical trials in newborns. Germany, 2023.
• Johnson S & Bountziouka V for the PARCA-R Study Group. Using the PARCA-R to assess children’s cognitive and language development at two years of age. Infant2020; 16(4): 159-63.
• Leven L, Grant A, Russell S. Neurodevelopmental follow-up: Multidisciplinary team working to standardise the delivery, uptake and recording of two-year assessments. In National Neonatal Audit Programme 2019 Annual Report on 2018 data. Royal College of Paediatrics and Child Health 2019
• Malak R, Kaczmarek A, Fechner B, Samborski W, Kwiatkowski J, Komisarek O, Tuczynska M, Tuczynska M, Mojs E. The importance of follow-up visits for children at risk of developmental delay – a review. Diagnostic (Basel) 2024;14(16):1764. doi: 10.3390/diagnostics14161764
• Marlow N, Doyle LW, Anderson P, Johnson S, Bhatt-Mehta V, Natalucci G, Darlow BA, David JM, Turner MA, International Neonatal Consortium. Assessment of long-term neurodevelopmental outcome following trials of medicinal products in newborn infants. Pediatric Research 2019;86(5):567-572. doi: 10.1038/s41390-019-0526-1.
• Merchant N, Shekhar L, Heurtas-Ceballos A, Johnson S, Arasu A for the British Association of Neonatal Neurodevelopmental Follow Up. Neurodevelopmental care following neonatal discharge. Paediatrics and Child Health;32(9): 324-331. doi: https://doi.org/10.1016/j.paed.2022.07.002
• Modi N, Ribas R, Johnson S, Lek E, Godambe S, Fukari-Irvine E, Ogundipe E, Tusor N, Das N, Udayakumaran A, Moss B, Banda V, Ougham K, Cornelius V, Arasu A, Wardle S, Battersby C, Bravery A. Pilot feasibility study of a digital technology approach to the systematic electronic capture of parent-reported data on cognitive and language development in children aged 2 years.  BMJ Health Care Inform. 2023;30(1):e100781. doi: 10.1136/bmjhci-2023-100781
• van Blankenstein E, Sodiwala T, Lanoue J, Modi N, Uthaya SN, Battersby C; on behalf of the UK Neonatal Collaborative. Two-year neurodevelopmental data for preterm infants born over an 11-year period in England and Wales, 2008–2018: a retrospective study using the National Neonatal Research Database. Archives of Disease in Childhood - Fetal and Neonatal Edition (Published Online First) 2023 Oct. doi: 10.1136/archdischild-2023-325746
• Vestager ML, Hansen ML, Rasmussen MI, Hahn GH, Hyttel-Sorensen S, Pellicer A, Heuchan AM, Hagmann C, Dempsey E, Dimitriou G, Pichler G, Naulaers G, Fuchs H, Tkaczyk J, Mintzer J, Fumagalli M, Nesargi S, Fredly S, Szczapa T, Gluud C, Jakobsen C, Greisen G. The effects of cerebral oximetry in mechanically ventilated newborns: a protocol for the SafeBoosC-IIIv randomised clinical trial. Trials 2023;24(1):696. doi: 10.1186/s13063-023-07699-x
• Zeitlin J, Maier RF, Cuttini M, Aden U, Boerch K, Gadzinowski J, Jarreau P, Lebeer J, Norman M, Pedersen P, Petrou S, Pfeil JM, Toome L, van Heijst A, van Reempts P, Varendi H, Barros H, Draper ES for the EPICE and SHIPS Research Groups. Cohort Profile: Effective Perinatal Intensive Care in Europe (EPICE) very preterm birth cohort. International Journal of Epidemiology 2020, 372-372n. doi: 10.1093/ije/dyz270