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      How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement?

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          Abstract

          Background

          It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context.

          Methods

          We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year.

          Results

          Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child’s non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools.

          Conclusion

          The formulation of explicit criteria to assess the quality of life in this context, along with detailed recommendations provided by professionals, support the development of systematic measurement strategy. Such a strategy would contribute to the development of common care goals and further facilitate communication between professionals and with the family.

          Electronic supplementary material

          The online version of this article (10.1186/s12904-018-0328-y) contains supplementary material, which is available to authorized users.

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          Most cited references28

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          Challenging issues in pediatric oncology.

          Improvements in protocol-driven clinical trials and supportive care for children and adolescents with cancer have reduced mortality rates by more than 50% over the past three decades. Overall, the 5-year survival rate for patients with pediatric cancer has increased to approximately 80%. Recognition of the biological heterogeneity within specific subtypes of cancer, the discovery of genetic lesions that drive malignant transformation and cancer progression, and improved understanding of the basis of drug resistance will undoubtedly catalyze further advances in risk-directed treatments and the development of targeted therapies, boosting the cure rates further. Emerging new treatments include novel formulations of existing chemotherapeutic agents, monoclonal antibodies against cancer-associated antigens, and molecular therapies that target genetic lesions and their associated signaling pathways. Recent findings that link pharmacogenomic variations with drug exposure, adverse effects, and efficacy should accelerate efforts to develop personalized therapy for individual patients. Finally, palliative care should be included as an essential part of cancer management to prevent and relieve the suffering and to improve the quality of life of patients and their families.
            Bookmark
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            Book: Crossing the Quality Chasm: A New Health System for the 21st Century

            A. Baker (2001)
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              Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes.

              With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.
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                Author and article information

                Contributors
                josianne.avoine-blondin@usherbrooke.ca
                veronique.parent3@usherbrooke.ca
                leonor.fasse@u-bourgogne.fr
                clementine.lopez@gustaveroussy.fr
                nago.humbert@umontreal.ca
                michel.duval@umontreal.ca
                +1 (514) 343-6111 , serge.sultan@umontreal.ca
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                8 May 2018
                8 May 2018
                2018
                : 17
                : 71
                Affiliations
                [1 ]ISNI 0000 0001 2173 6322, GRID grid.411418.9, Centre de Psycho-Oncologie, , CHU Sainte-Justine, ; Montréal, QC H3T 1C5 Canada
                [2 ]ISNI 0000 0000 9064 6198, GRID grid.86715.3d, Department of Psychology, , Université de Sherbrooke, ; 150, Place Charles-Le Moyne #200, Longueuil, Québec J4K 0A8 Canada
                [3 ]ISNI 0000 0001 2298 9313, GRID grid.5613.1, Department of Psychology, , Université de Bourgogne Franche-Comté, ; Esplanade Erasme, 21000 Dijon, France
                [4 ]ISNI 0000 0001 2284 9388, GRID grid.14925.3b, Hôpital Gustave Roussy, ; Villejuif, France
                [5 ]ISNI 0000 0001 2188 0914, GRID grid.10992.33, Université Paris Descartes, ; Paris, France
                [6 ]ISNI 0000 0001 2292 3357, GRID grid.14848.31, Université de Montréal, ; Montréal, QC Canada
                [7 ]ISNI 0000 0001 2284 9388, GRID grid.14925.3b, Department of child psychiatry, , Gustave Roussy, ; 114, rue Édouard-Vaillant, 94805 Villejuif, France
                [8 ]ISNI 0000 0001 2173 6322, GRID grid.411418.9, Department of Hematology/Oncology, , CHU Sainte-Justine, ; 3175, Chemin de la Côte-Sainte-Catherine, Montréal, Québec H3T 1C5 Canada
                Author information
                http://orcid.org/0000-0002-7520-1734
                Article
                328
                10.1186/s12904-018-0328-y
                5938811
                29739375
                c9d7469e-182f-4ad0-81bf-92c65e09e5f7
                © The Author(s). 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 22 December 2017
                : 1 May 2018
                Funding
                Funded by: Sainte-Justine UHC Foundation to the Center of Psycho-Oncology
                Funded by: Coast-to-Coast Foundation
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Anesthesiology & Pain management
                pediatric palliative care,quality of life,measurement,pediatric cancer,qualitative study

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