By Dr Clarissa Evelyn Schilstra

Book Chapters

Schilstra C, 2024, 'The Value of Social Media: A Patient's Perspective', in Applying Social Media Technologies in Healthcare Environments, pp. 7 - 13, http://dx.doi.org/10.4324/9781003580393-2

Journal articles

Schilstra CE; Glinatsis A; Emery M; Zebrack B; Cheung CK; Smith A; Sansom-Daly UM, 2026, 'Lived experience leadership in cancer research: a scoping review of conceptual definitions, roles, responsibilities, and impacts', Journal of Cancer Survivorship, pp. 1 - 11, http://dx.doi.org/10.1007/s11764-026-02119-w

Ghows C; Schilstra CE; McCleary K; Briggs NE; Kotecha RS; Lourenco RDA; Ramachandran S; Cockcroft R; Conyers R; Cross S; Dalla-Pozza L; Downie P; Revesz T; Osborn M; Alvaro F; Wakefield CE; Marshall GM; Trahair T; Mateos MK; Fardell JE, 2026, 'Tracking Health Related Quality of Life From Diagnosis to Follow-Up Among Australian Children With Acute Lymphoblastic Leukaemia', Pediatric Blood and Cancer, 73, http://dx.doi.org/10.1002/1545-5017.70539

De Silva G; Robertson EG; Bowers A; Schilstra C; Patel SK; McCarthy MC; McLoone J; Pole JD; Sansom-Daly UM; Oppelaar S; Cummings J; Bradford N, 2026, 'What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia', Health Expectations, 29, http://dx.doi.org/10.1111/hex.70689

Sansom-Daly UM; Irestorm E; Houweling R; Hetherington K; McGill BC; Ellis SJ; Schilstra CE; Donoghoe MW; Bravery BD; Cohn RJ; Anazodo A; Wakefield CE, 2026, 'Do young people who have been treated for cancer identify as ‘survivors’? Adolescents and young adults’ preferences for cancer-related identities in survivorship', Journal of Cancer Survivorship, http://dx.doi.org/10.1007/s11764-026-02074-6

Burns MA; Lah S; Law C; Schilstra CE; Ellis SJ; Wakefield CE; Sansom-Daly UM; Cohn RJ; Marshall GM; Lum A; Donnan B; Walwyn T; Carter A; Fielden P; De Luca CR; Barton B; Drew D; Maguire F; O’Dwyer C; Fardell JE, 2026, 'High School Cancer Experience and Age at Diagnosis: Perspectives of Adolescents, Young Adults, and Parents', Journal of Adolescent and Young Adult Oncology, http://dx.doi.org/10.1177/21565333261438095

De Silva G; Robertson EG; Bowers A; Schilstra C; Patel SK; McCarthy MC; McLoone J; Pole JD; Sansom‐Daly UM; Oppelaar S; Cummings J; Bradford N, 2026, 'Cover Image', Health Expectations, 29, http://dx.doi.org/10.1111/hex.70697

Schilstra CE; Ellis SJ; Sedger A; Burns MA; Miller KA; Wakefield CE; Cohn RJ; Lah S; Sansom-Daly UM; Anazodo AC; Fardell JE, 2025, 'Social Participation Among Long-Term Survivors of Childhood and Adolescent Cancer', Pediatric Blood and Cancer, 72, http://dx.doi.org/10.1002/pbc.32042

Sansom-Daly UM; McLoone JK; Fardell JE; Evans HE; McGill BC; Robertson EG; Signorelli C; Ellis S; Ha L; Hetherington K; Houweling RE; Nevin SM; Schilstra CE; Mitchell R; Haber M; Cohn RJ; Wakefield CE, 2025, 'Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People', Cancers, 17, pp. 2123 - 2123, http://dx.doi.org/10.3390/cancers17132123

Schilstra CE; Wakefield CE; McLoone J; Wiener L; Donoghoe MW; Hoffman RI; Echodu M; Ortiz R; Ilbawi A; Cayrol J, 2025, 'Development of a World Health Organization international survey assessing the lived experience of people affected by cancer: outcomes from pilot testing, user feedback, and survey revision', Supportive Care in Cancer, 33, http://dx.doi.org/10.1007/s00520-025-09372-2

McLoone JK; Wakefield CE; Glasson N; Wiener L; Ortiz R; Ilbawi A; Schilstra CE; Hoffman R; Cayrol J, 2025, 'The Lived Experience of Childhood Cancer Survivors and Their Parents: A Multi-National Study of Access to Survivorship Care and Information and Support Needs', Pediatric Blood and Cancer, 72, http://dx.doi.org/10.1002/pbc.31593

Parker C; Schilstra CE; McCleary K; Martin M; Trahair TN; Kotecha RS; Ramachandran S; Cockcroft R; Conyers R; Cross S; Dalla-Pozza L; Downie P; Revesz T; Osborn M; Marshall GM; Wakefield CE; Mateos MK; Fardell JE, 2025, 'Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment', Cancers, 17, http://dx.doi.org/10.3390/cancers17071238

Schilstra CE; Sansom-Daly UM; Ellis SJ; Anazodo AC; Trahair TN; Lindsay T; Amiruddin A; O’Dwyer C; Maguire F; Nevin S; Battisti R; Fardell JE, 2024, 'Social Anxiety Symptoms in Adolescents and Young Adults Recently Diagnosed with Cancer', Journal of Adolescent and Young Adult Oncology, 13, pp. 674 - 682, http://dx.doi.org/10.1089/jayao.2023.0186

Fardell JE; Schilstra C; Hikila J; Collins D; Kelada L; Lah S; Cohn RJ; Wakefield CE; Ellis S, 2024, 'Survivors of child and adolescent cancer experiences of bullying at school or work: self-report and parent proxy report', Journal of Psychosocial Oncology Research and Practice, 6, http://dx.doi.org/10.1097/OR9.0000000000000130

Schilstra CE; Sansom-Daly UM; Ellis SJ; Trahair TN; Anazodo AC; Amiruddin A; Lindsay T; Maguire F; Wakefield CE; Lah S; Bland E; Lenthen K; Rifkin A; Awan A; Kittos T; Hanbury N; Tsalidis S; Patterson P; McDonald F; Fardell JE, 2024, 'Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia', Journal of Adolescent and Young Adult Oncology, 13, pp. 8 - 29, http://dx.doi.org/10.1089/jayao.2023.0027

Cayrol J; Wakefield CE; Ilbawi A; Donoghoe M; Hoffman R; Echodu M; Schilstra C; Ortiz R; Wiener L, 2024, 'The lived experience of people affected by cancer: A global cross-sectional survey protocol', Plos One, 19, pp. e0294492, http://dx.doi.org/10.1371/journal.pone.0294492

Schilstra CE; Ellis SJ; Cohen J; Gall A; Diaz A; Clarke K; Dumlao G; Chard J; Cumming TM; Davis E; Dhillon H; Burns MA; Docking K; Koh ES; O'Reilly J; Sansom-Daly UM; Shaw J; Speers N; Taylor N; Warne A; Fardell JE, 2024, 'Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study', Jmir Cancer, 10, http://dx.doi.org/10.2196/47944

Schilstra CE; McCleary K; Fardell JE; Donoghoe MW; McCormack E; Kotecha RS; Lourenco RDA; Ramachandran S; Cockcroft R; Conyers R; Cross S; Dalla-Pozza L; Downie P; Revesz T; Osborn M; Alvaro F; Wakefield CE; Marshall GM; Mateos MK; Trahair TN, 2022, 'Prospective longitudinal evaluation of treatment-related toxicity and health-related quality of life during the first year of treatment for pediatric acute lymphoblastic leukemia', BMC Cancer, 22, pp. 985, http://dx.doi.org/10.1186/s12885-022-10072-x

Schilstra CE; Sansom-Daly UM; Schaffer M; Fardell JE; Anazodo AC; McCowage G; Fletcher JI; Marshall GM; Buchhorn-White J; Evtushenko M; Trahair TN; Ellis SJ, 2022, '"we Have All This Knowledge to Give, so Use Us as a Resource": Partnering with Adolescent and Young Adult Cancer Survivors to Determine Consumer-Led Research Priorities', Journal of Adolescent and Young Adult Oncology, 11, pp. 211 - 222, http://dx.doi.org/10.1089/jayao.2021.0052

Schilstra CE; Fardell JE; Ellis SJ; Jones KM; Anazodo AC; Trahair TN; Lah S; Cohn RJ; Wakefield CE; Sansom-Daly UM, 2022, 'Social Anxiety Symptoms in Survivors of Childhood and Adolescent Cancer', Journal of Adolescent and Young Adult Oncology, 11, pp. 129 - 137, http://dx.doi.org/10.1089/jayao.2021.0050

Schilstra CE; Fardell JE; Burns MA; Ellis SJ; Anazodo AC; Trahair TN; Sansom-Daly UM, 2021, 'Determinants of social functioning among adolescents and young adults with cancer: A systematic review', Psycho-Oncology, http://dx.doi.org/10.1002/pon.5740

Nevin SM; Wakefield CE; Schilstra CE; McGill BC; Bye A; Palmer EE, 2020, 'The information needs of parents of children with early-onset epilepsy: A systematic review', Epilepsy and Behavior, 112, pp. 107382, http://dx.doi.org/10.1016/j.yebeh.2020.107382

Ellis SJ; Fardell JE; Wakefield CE; Schilstra CE; Burns MA; Donnan B; Walwyn T; Lum A; Marshall G; Carter A; Barton B; Cohn RJ, 2019, 'Are we meeting the training needs of healthcare and education professionals supporting children with cancer in their return to school?', Pediatric Blood and Cancer, 66, pp. e27575, http://dx.doi.org/10.1002/pbc.27575

Sendak MD; Schilstra C; Tye E; Brotkin S; Maslow G; Gok C, 2018, 'Positive Youth Development at Camps for Youth with Chronic Illness: A Systematic Review of the Literature', Journal of Youth Development, 13, pp. 201 - 215, http://dx.doi.org/10.5195/jyd.2018.551

Conference Papers

Jackson ER; Duchatel RJ; Mannan A; Douglas A; Skerrett-Byrne DA; Smith N; Cain J; Hulleman E; Carcaboso AM; Monje M; McCowage GB; Alvaro F; Yadavilli S; Waszak SM; Koschmann C; Mueller S; Nazarian J; Dun MD, 2020, 'Panelist Invited Speakers', in ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 15 - 16, http://dx.doi.org/10.1111/ajco.13470

Conference Abstracts

Wakefield CE; Schilstra CE; Bedia GE; Wiener L; Ilbawi A; Palacios-Derflingher L; Dovers E; Cayrol J, 2026, 'Enduring grief after cancer: Global findings from bereaved families in the WHO Lived Experience of Cancer study', in Journal of Pain and Symptom Management, Elsevier, Vol. 71, pp. e838 - e839, http://dx.doi.org/10.1016/j.jpainsymman.2026.04.103

Preprints

Schilstra CE; Ellis SJ; Cohen J; Gall A; Diaz A; Clarke K; Dumlao G; Chard J; Cumming TM; Davis E; Dhillon H; Burns MA; Docking K; Koh E-S; O'Reilly J; Sansom-Daly UM; Shaw J; Speers N; Taylor N; Warne A; Fardell JE, Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study (Preprint), http://dx.doi.org/10.2196/preprints.47944

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