{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T18:00:06Z","timestamp":1777917606737,"version":"3.51.4"},"reference-count":22,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2011,1,12]],"date-time":"2011-01-12T00:00:00Z","timestamp":1294790400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2011,6]]},"abstract":"<jats:p>This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals ( n\u2009=\u200943) and families ( n\u2009=\u200916) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals\u2019 rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.<\/jats:p>","DOI":"10.1177\/0269216310391346","type":"journal-article","created":{"date-parts":[[2011,1,12]],"date-time":"2011-01-12T22:13:37Z","timestamp":1294870417000},"page":"357-364","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":37,"title":["Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families"],"prefix":"10.1177","volume":"25","author":[{"given":"Cari","family":"Malcolm","sequence":"first","affiliation":[{"name":"Cancer Care Research Centre, University of Stirling, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Liz","family":"Forbat","sequence":"additional","affiliation":[{"name":"Cancer Care Research Centre, University of Stirling, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gillian","family":"Anderson","sequence":"additional","affiliation":[{"name":"Cancer Care Research Centre, University of Stirling, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Faith","family":"Gibson","sequence":"additional","affiliation":[{"name":"Department of Children's Nursing, Faculty of Health & Social Care, Great Ormond Street Hospital and London South Bank University, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Richard","family":"Hain","sequence":"additional","affiliation":[{"name":"Cardiff University School of Medicine \u2013 Child Health, Children's Hospital, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2011,1,12]]},"reference":[{"key":"bibr1-0269216310391346","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2009.01053.x"},{"key":"bibr2-0269216310391346","doi-asserted-by":"publisher","DOI":"10.1191\/0269216305pm967oa"},{"key":"bibr3-0269216310391346","volume-title":"A guide to the development of children\u2019s palliative care services","author":"ACT\/RCPCH","year":"1997"},{"key":"bibr4-0269216310391346","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2009.0295"},{"key":"bibr5-0269216310391346","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2004.00394.x"},{"key":"bibr6-0269216310391346","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2006.12.6.21450"},{"key":"bibr7-0269216310391346","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2006.12.12.22544"},{"key":"bibr8-0269216310391346","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2004.00424.x"},{"key":"bibr9-0269216310391346","doi-asserted-by":"publisher","DOI":"10.7748\/paed2007.02.19.1.14.c4440"},{"key":"bibr10-0269216310391346","unstructured":"ACT\/RCPCH.\n                      A guide to the development of children\u2019s palliative care services\n                      , 2nd ed. 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