Select Publications

Journal articles

Gupta T; Messmer M; Singh K; Cortes J; Boan C; Weber T; Hile D; Kasparian NA; D'Souza R; Russo M; John AS, 2025, 'Pregnancy care experiences for adults with congenital heart disease in the United States', American Heart Journal, 280, pp. 30 - 41, http://dx.doi.org/10.1016/j.ahj.2024.10.015

Harris KW; Schweiberger K; Kavanaugh-McHugh A; Arnold RM; Merlin J; Chang JC; Kasparian NA, 2024, 'An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease', PEC Innovation, 4, http://dx.doi.org/10.1016/j.pecinn.2024.100265

Hansen SM; Johansen C; Obinah MPB; Kasparian NA; Genter P; Bidstrup PE; Hölmich LR, 2024, 'MELACARE Nurse-led follow-up after early-stage melanoma: protocol and feasibility.', Acta Oncol, 63, pp. 909 - 914, http://dx.doi.org/10.2340/1651-226X.2024.41037

Uzark K; Yu S; Afton K; Atz A; Floh A; Kasparian N; Lambert L; Morrison T; Pemberton V; Shah A; Sood E; Suthar D; Trachtenberg F; Votava-Smith J; Williams J; Newburger J; Goldberg C, 2024, 'Abstract 4122307: Longitudinal Changes in Parent-reported Quality of Life in Children with Single Ventricle', Circulation, 150, http://dx.doi.org/10.1161/circ.150.suppl_1.4122307

Griffiths N; Laing S; Spence K; Foureur M; Popat H; Gittany H; Sinclair L; KASPARIAN N, 2024, 'Mental health screening for parents following surgical neonatal intensive care unit (NICU) discharge', Early Human Development, 198, http://dx.doi.org/10.1016/j.earlhumdev.2024.106128

Siegel RM; Kist C; Kirk S; Kharofa R; Stackpole K; Sammons A; Dynan L; McGrady ME; Seo JD; Urbina E; Kasparian NA, 2024, 'A Randomized Controlled Trial Comparing Loss versus Gain Incentives to Improve Adherence to an Obesity Treatment Intervention in Adolescents', Nutrients, 16, http://dx.doi.org/10.3390/nu16193363

Peterson JK; Clarke S; Gelb BD; Kasparian NA; Kazazian V; Pieciak K; Pike NA; Setty SP; Uveges MK; Rudd NA, 2024, 'Trisomy 21 and Congenital Heart Disease: Impact on Health and Functional Outcomes From Birth Through Adolescence: A Scientific Statement From the American Heart Association', Journal of the American Heart Association, 13, http://dx.doi.org/10.1161/JAHA.124.036214

Marshall KH; d'Udekem Y; Winlaw DS; Zannino D; Celermajer DS; Justo R; Iyengar A; Weintraub R; Wheaton G; Cordina R; Sholler GF; Woolfenden SR; Kasparian NA, 2024, 'Wellbeing in Children and Adolescents with Fontan Physiology', Journal of Pediatrics, 273, http://dx.doi.org/10.1016/j.jpeds.2024.114156

Marshall KH; D’udekem Y; Winlaw DS; Zannino D; Celermajer DS; Justo R; Iyengar A; Cordina R; Sholler GF; Woolfenden SR; Kasparian NA, 2024, 'Quality of Life and Well-Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study', Journal of the American Heart Association, 13, http://dx.doi.org/10.1161/JAHA.123.033818

Phillips K; Callaghan BL; Webb A; Kan J; Ooi CY; Kasparian NA, 2024, 'MEDIC: Development and validation of a new instrument to assess emotional reactivity to medical stimuli in a representative community sample of adults', Journal of Psychiatric Research, 176, pp. 265 - 275, http://dx.doi.org/10.1016/j.jpsychires.2024.06.021

Akram F; Webb AE; Pidcock M; Farrar MA; Kasparian NA, 2024, 'Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings', JAMA network open, 7, pp. e2422104, http://dx.doi.org/10.1001/jamanetworkopen.2024.22104

Opotowsky AR; Khairy P; Diller G; Kasparian NA; Brophy J; Jenkins K; Lopez KN; McCoy A; Moons P; Ollberding NJ; Rathod RH; Rychik J; Thanassoulis G; Vasan RS; Marelli A, 2024, 'Clinical Risk Assessment and Prediction in Congenital Heart Disease Across the Lifespan: JACC Scientific Statement', Journal of the American College of Cardiology, 83, pp. 2092 - 2111, http://dx.doi.org/10.1016/j.jacc.2024.02.055

Verrall CE; Tran DL; Kasparian NA; Williams T; Oxenham V; Ayer J; Celermajer DS; Cordina RL, 2024, 'Cognitive Functioning and Psychosocial Outcomes in Adults with Complex Congenital Heart Disease: A Cross-sectional Pilot Study', Pediatric Cardiology, 45, pp. 529 - 543, http://dx.doi.org/10.1007/s00246-023-03376-7

Sholler GF; Selbie LA; Tallon M; Keating J; Ayer J; Burchill L; Cheung MMH; Cordina R; Culnane E; Donovan S; Eastaugh L; Elliott C; Fletcher J; Justo RN; Kasparian NA; Kelly A; Morsman D; Nicolae M; Orr Y; Pendrick E; Ramsay JM; Reményi B; Shipton S; Weintraub RG; Van Wijk E; Wheaton G; Venugopal P, 2024, 'Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards). 1st Edition', Heart Lung and Circulation, 33, pp. 153 - 196, http://dx.doi.org/10.1016/j.hlc.2023.03.017

Abell B; Rodwell D; Eagleson KJ; Parsonage W; Auld B; Bora S; Kasparian NA; Justo R; McPhail SM, 2024, '“It's more than just a conversation about the heart”: exploring barriers, enablers, and opportunities for improving the delivery and uptake of cardiac neurodevelopmental follow-up care', Frontiers in Pediatrics, 12, http://dx.doi.org/10.3389/fped.2024.1364190

Paguinto SG; Kasparian NA; Carroll K; Thomas N; Bray P; Farrar MA, 2024, 'Getting Wheels: development and evaluation of a psychoeducational resource for parents of children with a neuromuscular condition following recommendation of wheelchair equipment', Disability and Rehabilitation: Assistive Technology, 19, pp. 2630 - 2640, http://dx.doi.org/10.1080/17483107.2024.2310282

Marshall KH; Pincus HA; Tesson S; Lingam R; Woolfenden SR; Kasparian NA, 2024, 'Integrated psychological care in pediatric hospital settings for children with complex chronic illness and their families: a systematic review', Psychology and Health, 39, pp. 452 - 478, http://dx.doi.org/10.1080/08870446.2022.2072843

Martin A; Cust AE; Lo S; Morton RL; Kasparian N; Collgros H; Teh N; Martin L; Guitera P, 2024, 'Mobile teledermoscopy for patients at high risk of cutaneous melanoma: A single-arm, feasibility study of a clinical intervention at two tertiary centres (MOBILEMEL)', Journal of the European Academy of Dermatology and Venereology, http://dx.doi.org/10.1111/jdv.20300

Tesson S; Swinsburg D; Nielson-Jones C; Costa DSJ; Winlaw DS; Badawi N; Sholler GF; Butow PN; Kasparian NA, 2024, 'Mother-Infant Dyadic Synchrony and Interaction Patterns after Infant Cardiac Surgery', Journal of Pediatric Psychology, 49, pp. 13 - 26, http://dx.doi.org/10.1093/jpepsy/jsad069

Abell B; Rodwell D; Eagleson KJ; Auld B; Bora S; Kasparian NA; Justo R; Parsonage W; McPhail SM, 2024, 'Neurodevelopmental follow-up care pathways and processes for children with congenital heart disease in Australia', Pediatric Research, http://dx.doi.org/10.1038/s41390-024-03722-2

Eagleson K; Kasparian N; Justo R; Bora S, 2024, 'Correlates of Resilience in Families of Children With Dextro-Transposition of the Great Arteries', Heart, Lung and Circulation, 33, pp. S490 - S490, http://dx.doi.org/10.1016/j.hlc.2024.06.795

Clode M; Kasparian N; McGrady M; Aloysius L; Cordina R, 2024, 'The Power of Words: Preferred Medical Terminology of People Affected by Congenital Heart Conditions', Heart, Lung and Circulation, 33, pp. S501 - S501, http://dx.doi.org/10.1016/j.hlc.2024.06.819

Phillips K; Callaghan B; Rajagopalan V; Akram F; Newburger JW; Kasparian NA, 2023, 'Neuroimaging and Neurodevelopmental Outcomes Among Individuals With Complex Congenital Heart Disease: JACC State-of-the-Art Review', Journal of the American College of Cardiology, 82, pp. 2225 - 2245, http://dx.doi.org/10.1016/j.jacc.2023.09.824

Elhoff JJ; Kasparian NA, 2023, 'If Not Now, When? Taking Action to Improve Mental Health Outcomes for Families of Children With Heart Disease', Pediatric Critical Care Medicine, 24, pp. 966 - 969, http://dx.doi.org/10.1097/PCC.0000000000003319

Miles KG; Farkas DK; Laugesen K; Sørensen HT; Kasparian NA; Madsen N, 2023, 'Mental Health Conditions among Children and Adolescents with Congenital Heart Disease: A Danish Population-Based Cohort Study', Circulation, 148, pp. 1381 - 1394, http://dx.doi.org/10.1161/CIRCULATIONAHA.123.064705

Schweiberger K; Harris KW; Kavanaugh-McHugh A; Soudi A; Arnold RM; Merlin JS; Kasparian NA; Chang JC, 2023, '“I Just Want You to Hear That Term”: Characterizing Language Used in Fetal Cardiology Consultations', Journal of Cardiovascular Development and Disease, 10, http://dx.doi.org/10.3390/jcdd10090394

Johnson S; Kasparian NA; Cullum AS; Flanagan T; Ponting C; Kowalewski L; Main EK, 2023, 'Addressing Adverse Childhood and Adult Experiences during Prenatal Care', Obstetrics and Gynecology, 141, pp. 1072 - 1087, http://dx.doi.org/10.1097/AOG.0000000000005199

Kim ME; Kasparian NA; Zang H; Pater C; Chlebowski MM; Marcuccio E; Florez A; Morales DLS; Madsen N; Moore RA, 2023, 'Are Parent Discharge Readiness Scores Effective for Patients With Congenital Heart Disease After Cardiac Surgery?', Journal of Pediatrics, 257, http://dx.doi.org/10.1016/j.jpeds.2023.02.008

Eagleson KJ; Mccombs D; Gerlich TM; Justo RN; Kasparian NA; Bora S, 2023, 'Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease', Journal of Pediatric Psychology, 48, pp. 537 - 552, http://dx.doi.org/10.1093/jpepsy/jsad015

Verrall CE; Patel S; Travitz L; Tchieu J; Dale RC; Kasparian NA; Winlaw DS; Blue GM, 2023, 'Biological and structural phenotypes associated with neurodevelopmental outcomes in congenital heart disease', Translational Pediatrics, 12, pp. 768 - 786, http://dx.doi.org/10.21037/tp-22-687

Akram F; Pidcock M; Oake D; Sholler GF; Farrar MA; Kasparian NA, 2023, '“The usual challenges of work are all magnified”: Australian paediatric health professionals’ experiences during the COVID-19 pandemic', International Journal of Cardiology Congenital Heart Disease, 11, http://dx.doi.org/10.1016/j.ijcchd.2022.100434

Kasparian NA; Sadhwani A; Sananes R; Blumenfeld E; Butcher JL; Cassidy AR; Cox SM; Kenowitz J; Miller TA; Sanz JH; Wolfe KR; Ilardi D, 2023, 'Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: A site survey from the Cardiac Neurodevelopmental Outcome Collaborative', Cardiology in the Young, 33, pp. 280 - 287, http://dx.doi.org/10.1017/S1047951122000579

Siegel R; McGrady ME; Dynan L; Kharofa R; Stackpole K; Casson P; Siegel F; Kasparian NA, 2023, 'Effects of Loss and Gain Incentives on Adherence in Pediatric Weight Management: Preliminary Studies and Economic Evaluation of a Theoretical Trial', International Journal of Environmental Research and Public Health, 20, http://dx.doi.org/10.3390/ijerph20010584

Chlebowski MM; Stark C; Khoury PR; Zang H; Baenziger J; Kasparian NA, 2023, 'Evaluation of the use of visual storytelling as an educational intervention in the cardiac ICU: reaching parents before they are in crisis', Cardiology in the Young, http://dx.doi.org/10.1017/S1047951123004201

Paguinto SG; Kasparian NA; Bray P; Farrar M, 2023, 'Multidisciplinary perspectives and practices of wheelchair prescription for children with neuromuscular conditions', Disability and Rehabilitation: Assistive Technology, 18, pp. 166 - 174, http://dx.doi.org/10.1080/17483107.2020.1839793

Kavanaugh-McHugh A; Arnold R; Merlin J; Kasparian N; Chang J, 2023, '“I just want you to hear that term”: Characterizing language used in fetal cardiology consultations', Patient Education and Counseling, 109, pp. 107 - 107, http://dx.doi.org/10.1016/j.pec.2022.10.247

Harris KW; Schweiberger K; Kavanaugh-McHugh A; Arnold RM; Merlin J; Kasparian NA; Chang JC, 2023, 'Introducing Uncertainty: An Observational Study of Conversations on Prenatal Diagnosis of Complex Congenital Heart Disease (Sci238)', Journal of Pain and Symptom Management, 65, pp. e660 - e661, http://dx.doi.org/10.1016/j.jpainsymman.2023.02.288

Miles K; Kasparian NA; Farkas D; Laugesen K; Sorensen HT; Madsen N, 2022, 'Abstract 10042: Mental Health Conditions In Congenital Heart Disease: A Danish Population Based Cohort Study', Circulation, 146, http://dx.doi.org/10.1161/circ.146.suppl_1.10042

Perazzo D; Moore R; Kasparian NA; Rodts M; Horowitz-Kraus T; Crosby L; Turpin B; Beck AF; Hutton J, 2022, 'Chronic pediatric diseases and risk for reading difficulties: a narrative review with recommendations', Pediatric Research, 92, pp. 966 - 978, http://dx.doi.org/10.1038/s41390-022-01934-y

Marshall KH; D'udekem Y; Winlaw DS; Dalziel K; Woolfenden SR; Zannino D; Costa DSJ; Bishop R; Celermajer DS; Sholler GF; Kasparian NA, 2022, 'The Australian and New Zealand Fontan Registry Quality of Life Study: Protocol for a population-based assessment of quality of life among people with a Fontan circulation, their parents, and siblings', BMJ Open, 12, http://dx.doi.org/10.1136/bmjopen-2022-065726

Kovacs AH; Brouillette J; Ibeziako P; Jackson JL; Kasparian NA; Kim YY; Livecchi T; Sillman C; Kochilas LK, 2022, 'Psychological Outcomes and Interventions for Individuals with Congenital Heart Disease: A Scientific Statement from the American Heart Association', Circulation: Cardiovascular Quality and Outcomes, 15, pp. 672 - 688, http://dx.doi.org/10.1161/HCQ.0000000000000110

Cox SM; Butcher JL; Sadhwani A; Sananes R; Sanz JH; Blumenfeld E; Cassidy AR; Cowin JC; Ilardi D; Kasparian NA; Kenowitz J; Kroll K; Miller TA; Wolfe KR, 2022, 'Integrating Telehealth Into Neurodevelopmental Assessment: A Model From the Cardiac Neurodevelopmental Outcome Collaborative', Journal of Pediatric Psychology, 47, pp. 707 - 713, http://dx.doi.org/10.1093/jpepsy/jsac003

Kasparian NA; Kovacs AH, 2022, 'Quality of Life and Other Patient-Reported Outcomes Across the Life Span Among People With Fontan Palliation', Canadian Journal of Cardiology, 38, pp. 963 - 976, http://dx.doi.org/10.1016/j.cjca.2022.04.025

Carey KA; Farrar MA; Kasparian NA; Street DJ; De Abreu Lourenco R, 2022, 'Family, healthcare professional, and societal preferences for the treatment of infantile spinal muscular atrophy: A discrete choice experiment', Developmental Medicine and Child Neurology, 64, pp. 753 - 761, http://dx.doi.org/10.1111/dmcn.15135

Tacy TA; Kasparian NA; Karnik R; Geiger M; Sood E, 2022, 'Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease', Seminars in Perinatology, 46, http://dx.doi.org/10.1016/j.semperi.2022.151587

Luigjes-Huizer YL; Tauber NM; Humphris G; Kasparian NA; Lam WWT; Lebel S; Simard S; Smith AB; Zachariae R; Afiyanti Y; Bell KJL; Custers JAE; de Wit NJ; Fisher PL; Galica J; Garland SN; Helsper CW; Jeppesen MM; Liu J; Mititelu R; Monninkhof EM; Russell L; Savard J; Speckens AEM; van Helmondt SJ; Vatandoust S; Zdenkowski N; van der Lee ML, 2022, 'What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis', Psycho-Oncology, 31, pp. 879 - 892, http://dx.doi.org/10.1002/pon.5921

McDonald HM; Sherman KA; Kasparian NA, 2022, 'How Mindful Awareness and Psychological Distress Influence Mother-Infant Bonding and Maternal Perceptions of Infant Temperament', Mindfulness, 13, pp. 955 - 966, http://dx.doi.org/10.1007/s12671-022-01848-0

Sood E; Gramszlo C; Perez Ramirez A; Braley K; Butler SC; Davis JA; Divanovic AA; Edwards LA; Kasparian N; Kelly SL; Neely T; Ortinau CM; Riegel E; Shillingford AJ; Kazak AE, 2022, 'Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease', Journal of Patient Experience, 9, http://dx.doi.org/10.1177/23743735221092488

Thompson JR; Smith AL; Lo SN; Kasparian NA; Saw RP; Dieng M; Seaman L; Martin LK; Guitera P; Milne D; Schmid H; Cust AE; Bartula I, 2022, 'Protocol for the implementation of a stepped-care model to address fear of cancer recurrence in patients previously diagnosed with early-stage (0-II) melanoma', BMJ open, 12, pp. e054337, http://dx.doi.org/10.1136/bmjopen-2021-054337

Tesson S; Butow PN; Marshall K; Fonagy P; Kasparian NA, 2022, 'Parent-child bonding and attachment during pregnancy and early childhood following congenital heart disease diagnosis', Health Psychology Review, 16, pp. 378 - 411, http://dx.doi.org/10.1080/17437199.2021.1927136


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