{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T21:40:25Z","timestamp":1792618825615,"version":"4.5.0"},"reference-count":44,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,9,27]],"date-time":"2026-09-27T00:00:00Z","timestamp":1790467200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,27]],"date-time":"2026-09-27T00:00:00Z","timestamp":1790467200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100001793","name":"Queensland University of Technology","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100001793","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Priority\u2010setting partnerships (PSPs) are used to identify research questions that matter most to patients, caregivers, and clinicians. However, submissions that fall outside the scope of research prioritisation are rarely examined despite their potential to reveal important unmet needs. This study explored concerns relevant to practice and policy using the out\u2010of\u2010scope questions submitted during the Australian Child and Adolescent Cancer PSP.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted the Australian Child and Adolescent Cancer PSP with the James Lind Alliance to identify research priorities for childhood cancer. An online national survey collected submissions from children and adolescents diagnosed with cancer, their caregivers, and healthcare professionals. We identified submissions that fell outside the PSP scope. These were collated and analysed using qualitative content analysis, followed by framework analysis to deductively map themes to the World Health Organisation Health System Building Blocks, enabling system\u2010level interpretation of community\u2010identified concerns.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of the 701 submissions, 99 (14%) were classified as out\u2010of\u2010scope and included in this analysis. Seventy\u2010two respondents contributed to these submissions, most of whom were caregivers (n\u2009=\u200958, 81%). Themes mapped across the WHO building blocks, including treatment access, research innovation and translation, health financing, service delivery and environment of care, leadership and governance, health information and communication, and health workforce. Additional concerns were classified as dimensions of care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Out\u2010of\u2010scope PSP submissions provide valuable insights into patient, caregiver, and clinician concerns that complement research priorities. They highlight persistent challenges in access to care, supportive services, workforce capacity, information provision, and financial burden, underscoring that many family concerns stem from gaps in implementation, service delivery, and policy, rather than evidence alone. These system\u2010level challenges must be communicated to funders, policymakers, charities, and consumers to translate these insights into meaningful improvements in care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70884","type":"journal-article","created":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T06:49:07Z","timestamp":1790578147000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Beyond Research Priorities: Stakeholder\u2010Identified Health System Challenges From an Australian Childhood Cancer Priority\u2010Setting Partnership"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9176-9306","authenticated-orcid":false,"given":"Gayani","family":"De Silva","sequence":"first","affiliation":[{"name":"Cancer &amp; Palliative Care Outcomes Centre, Centre for Healthcare Transformation, Faculty of Health Queensland University of Technology Brisbane Queensland Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9395-7896","authenticated-orcid":false,"given":"Eden G.","family":"Robertson","sequence":"additional","affiliation":[{"name":"Discipline of Paediatrics and Child Health, School of Clinical Medicine UNSW Medicine &amp; Health, Randwick Clinical Campus, UNSW Sydney, Randwick  New South Wales Australia"},{"name":"Behavioural Sciences Unit Kids Cancer Centre, Sydney Children's Hospital Randwick New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9870-0931","authenticated-orcid":false,"given":"Alison","family":"Bowers","sequence":"additional","affiliation":[{"name":"Cancer &amp; Palliative Care Outcomes Centre, Centre for Healthcare Transformation, Faculty of Health Queensland University of Technology Brisbane Queensland Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0413-5434","authenticated-orcid":false,"given":"Jason D.","family":"Pole","sequence":"additional","affiliation":[{"name":"Queensland Digital Health Centre, Faculty of Health, Medicine and Behavioural Sciences University of Queensland Brisbane Queensland Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0626-1899","authenticated-orcid":false,"given":"Sheila K.","family":"Patel","sequence":"additional","affiliation":[{"name":"Parent Representative on the Child and Adolescent Cancer Priority Setting Partnership Melbourne Victoria Australia"},{"name":"Department of Medicine University of Melbourne Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7720-9839","authenticated-orcid":false,"given":"Joanne","family":"Cummings","sequence":"additional","affiliation":[{"name":"Anglicare  New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1602-4544","authenticated-orcid":false,"given":"Natalie","family":"Bradford","sequence":"additional","affiliation":[{"name":"Cancer &amp; Palliative Care Outcomes Centre, Centre for Healthcare Transformation, Faculty of Health Queensland University of Technology Brisbane Queensland Australia"},{"name":"Viertel Cancer Research Centre, Cancer Council Queensland Brisbane Queensland Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,27]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s42269-021-00687-8"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1093\/jmp\/jhad024"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjgh-2021-007465"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0251685"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2018-027473"},{"key":"e_1_2_11_7_1","unstructured":"JLA. 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James Lind Alliance priority setting partnerships.2025[Accessed date 2 October 2025] http:\/\/www.jla.nihr.ac.uk\/."},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-022-02149-2"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13690-025-01567-7"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13276"},{"key":"e_1_2_11_12_1","unstructured":"F.Todd Fordham J.Godwin S.Sivell A.Byrne S.Best andA.NelsonBeyond the Questions \u2010 Shared Experiences of Palliative and End\u2010of\u2010Life Care2017."},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-023-00433-6"},{"key":"e_1_2_11_14_1","unstructured":"Protocol: Australian Child and Adolescent Cancer PSP JLA website: NIHR JLA; 2024 https:\/\/www.jla.nihr.ac.uk\/documents\/australian-child-and-adolescent-cancer-psp-protocol."},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70689"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/16094069251381706"},{"key":"e_1_2_11_17_1","unstructured":"WHO. 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