, liée à la réticence de certains médecins de leur proposer l'étude. Les difficultés à aborder le sujet des soins palliatifs avec certaines familles y ont participé de façon non négligeable

, ans étaient rempli par les parents et ne reflétaient donc pas entièrement le ressenti des enfants, contrairement aux autres tranches d'âge témoignant ainsi des difficultés des mesures auto-rapportées au sein de cette population

, Concernant l'échelle de symptômes utilisée, il n'y avait pas de validation en français mais nous l'avons traduite à partir de la version anglaise

L. Enfin and . Caractère,

B. Lacour, A. Guyot-goubin, S. Guissou, S. Bellec, E. Désandes et al., Incidence of childhood cancer in France: National Children Cancer Registries, Eur J Cancer Prev Off J Eur Cancer Prev Organ ECP, vol.19, issue.3, pp.173-81, 2000.

L. M. Vrooman and L. B. Silverman, Treatment of Childhood Acute Lymphoblastic Leukemia: Prognostic Factors and Clinical Advances, Curr Hematol Malig Rep, vol.11, issue.5, pp.385-94, 2016.

T. H. Tran, M. H. Harris, J. V. Nguyen, T. M. Blonquist, K. E. Stevenson et al., Prognostic impact of kinase-activating fusions and IKZF1 deletions in pediatric high-risk B-lineage acute lymphoblastic leukemia, Blood Adv, vol.2, issue.5, pp.529-562, 2018.

A. Gajjar, D. C. Bowers, M. A. Karajannis, S. Leary, H. Witt et al., Pediatric Brain Tumors: Innovative Genomic Information Is Transforming the Diagnostic and Clinical Landscape, J Clin Oncol Off J Am Soc Clin Oncol, vol.33, issue.27, pp.2986-98, 2015.

C. Protocole,

E. Steliarova-foucher, M. Colombet, L. Ries, F. Moreno, A. Dolya et al., International incidence of childhood cancer, 2001-10: a population-based registry study, Lancet Oncol, vol.18, issue.6, pp.719-750, 2017.
URL : https://hal.archives-ouvertes.fr/hal-01955203

A. A. Ahmed, L. Zhang, N. Reddivalla, and M. Hetherington, Neuroblastoma in children: Update on clinicopathologic and genetic prognostic factors, Pediatr Hematol Oncol, vol.34, issue.3, pp.165-85, 2017.

K. S. Mak, S. W. Lee, T. A. Balboni, and K. J. Marcus, Clinical outcomes and toxicity following palliative radiotherapy for childhood cancers. Pediatr Blood Cancer, vol.65, 2018.

T. W. Buckner, J. Wang, D. A. Dewalt, S. Jacobs, B. B. Reeve et al., Patterns of symptoms and functional impairments in children with cancer. Pediatr Blood Cancer, vol.61, pp.1282-1290, 2014.

A. W. Miser, J. A. Dothage, R. A. Wesley, and J. S. Miser, The prevalence of pain in a pediatric and young adult cancer population, Pain, vol.29, issue.1, pp.73-83, 1987.

S. C. Elliott, A. W. Miser, A. M. Dose, D. L. Betcher, J. R. O'fallon et al., Epidemiologic features of pain in pediatric cancer patients: a co-operative community-based study

, Clin J Pain, vol.7, issue.4, pp.263-271, 1991.

C. M. Ruland, G. A. Hamilton, and B. Schjødt-osmo, The complexity of symptoms and problems experienced in children with cancer: a review of the literature, J Pain Symptom Manage, vol.37, issue.3, pp.403-421, 2009.

P. A. Forgeron, G. A. Finley, and M. Arnaout, Pediatric pain prevalence and parents' attitudes at a cancer hospital in Jordan, J Pain Symptom Manage, vol.31, issue.5, pp.440-448, 2006.

K. A. Meeske, S. E. Siegel, D. R. Globe, W. J. Mack, and L. Bernstein, Prevalence and correlates of fatigue in long-term survivors of childhood leukemia, J Clin Oncol Off J Am Soc Clin Oncol, vol.23, issue.24, pp.5501-5511, 2005.

S. L. Docherty, Symptom experiences of children and adolescents with cancer, Annu Rev Nurs Res, vol.21, pp.123-172, 2003.

S. A. Kestler and G. Lobiondo-wood, Review of symptom experiences in children and adolescents with cancer. Cancer Nurs, vol.35, pp.31-49, 2012.

C. Baggott, M. Dodd, C. Kennedy, N. Marina, and C. Miaskowski, Multiple symptoms in pediatric oncology patients: a systematic review, J Pediatr Oncol Nurs Off J Assoc Pediatr Oncol Nurses, vol.26, issue.6, pp.325-364, 2009.

Q. Lu, K. R. Krull, W. Leisenring, J. E. Owen, T. Kawashima et al., Pain in longterm adult survivors of childhood cancers and their siblings: a report from the Childhood Cancer Survivor Study, Pain, vol.152, issue.11, pp.2616-2640, 2011.

J. A. Heath, N. E. Clarke, S. M. Donath, M. Mccarthy, V. A. Anderson et al., Symptoms and suffering at the end of life in children with cancer: an Australian perspective, Med J Aust, vol.192, issue.2, pp.71-76, 2010.

J. Theunissen, P. M. Hoogerbrugge, T. Van-achterberg, J. B. Prins, M. Vernooij-dassen et al., Symptoms in the palliative phase of children with cancer. Pediatr Blood Cancer, vol.49, pp.160-165, 2007.

J. Wolfe, H. E. Grier, N. Klar, S. B. Levin, J. M. Ellenbogen et al., Symptoms and suffering at the end of life in children with cancer, N Engl J Med, vol.342, issue.5, pp.326-359, 2000.

R. L. Woodgate and L. F. Degner, Expectations and beliefs about children's cancer symptoms: perspectives of children with cancer and their families, Oncol Nurs Forum, vol.30, issue.3, pp.479-91, 2003.

M. Götte, S. Kesting, C. Winter, D. Rosenbaum, and J. Boos, Comparison of self-reported physical activity in children and adolescents before and during cancer treatment. Pediatr Blood Cancer, vol.61, pp.1023-1031, 2014.

M. Götte, S. Kesting, and J. Boos, Reply: Should we encourage exercise and sports in children and adolescents with cancer? Pediatr Blood Cancer, vol.61, p.2126, 2014.

K. I. Braam, P. Van-der-torre, T. Takken, M. A. Veening, E. Van-dulmen-den-broeder et al., Physical exercise training interventions for children and young adults during and after treatment for childhood cancer. Cochrane Database Syst Rev, vol.3, p.8796, 2016.

T. Hechler, M. Blankenburg, S. J. Friedrichsdorf, D. Garske, B. Hübner et al., Parents' perspective on symptoms, quality of life, characteristics of death and endof-life decisions for children dying from cancer, Klin Padiatr, vol.220, issue.3, pp.166-74, 2008.

C. Zimmermann, N. Swami, M. Krzyzanowska, B. Hannon, N. Leighl et al., Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial, Lancet Lond Engl, vol.383, issue.9930, pp.1721-1751, 2014.

J. S. Temel, J. A. Greer, A. Muzikansky, E. R. Gallagher, S. Admane et al., Early palliative care for patients with metastatic non-small-cell lung cancer, N Engl J Med, vol.363, issue.8, pp.733-775, 2010.

J. M. Snaman, E. C. Kaye, J. J. Lu, A. Sykes, and J. N. Baker, Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients, J Palliat Med, vol.20, issue.5, pp.509-525, 2017.

J. M. Snaman, A. C. Talleur, J. Lu, D. R. Levine, E. C. Kaye et al., Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life, Bone Marrow Transplant, vol.53, issue.1, pp.84-90, 2018.

D. S. Zhukovsky, C. E. Herzog, G. Kaur, J. L. Palmer, and E. Bruera, The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer, J Palliat Med, vol.12, issue.4, pp.343-352, 2009.

F. D. Ferris, E. Bruera, N. Cherny, C. Cummings, D. Currow et al., Palliative cancer care a decade later: accomplishments, the need, next steps --from the, J Clin Oncol Off J Am Soc Clin Oncol, vol.27, issue.18, pp.3052-3060, 2009.

D. Hui and E. Bruera, Integrating palliative care into the trajectory of cancer care, Nat Rev Clin Oncol, vol.13, issue.3, pp.159-71, 2016.

J. Berendt, S. Stiel, S. T. Simon, A. Schmitz, B. Van-oorschot et al., Integrating Palliative Care Into Comprehensive Cancer Centers: Consensus-Based Development of Best Practice Recommendations, The Oncologist, vol.21, issue.10, pp.1241-1250, 2016.

E. C. Kaye, S. Friebert, and J. N. Baker, Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families. Pediatr Blood Cancer, vol.63, pp.593-600, 2016.

E. C. Kaye, C. A. Gushue, S. Demarsh, J. Jerkins, A. Sykes et al., Illness and end-of-life experiences of children with cancer who receive palliative care. Pediatr Blood Cancer, vol.65, 2018.

M. M. Stevens, D. Pozza, L. Cavalletto, B. Cooper, M. G. Kilham et al., Pain and symptom control in paediatric palliative care, Cancer Surv, vol.21, pp.211-242, 1994.

S. Mercadante, Pain treatment and outcomes for patients with advanced cancer who receive follow-up care at home. Cancer, vol.85, pp.1849-58, 1999.

A. Ravanello, I. Desguerre, S. Frache, P. Hubert, D. Orbach et al., End-of-life in specialized medical pediatrics department: A French national survey, vol.24, pp.231-271, 2017.

A. R. Rosenberg and J. Wolfe, Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions. Lancet Child Adolesc Health, vol.1, pp.56-67, 2017.

N. Fayed, V. Schiariti, C. Bostan, A. Cieza, and A. Klassen, Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions. Qual Life Res Int J Qual Life Asp Treat Care Rehabil, vol.20, pp.1247-58, 2011.

A. F. Klassen, S. J. Anthony, A. Khan, L. Sung, and R. Klaassen, Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review. Support Care Cancer Off J Multinatl Assoc Support Care Cancer, vol.19, pp.1275-87, 2011.

S. Dobrozsi, K. Yan, R. Hoffmann, and J. Panepinto, Patient-reported health status during pediatric cancer treatment. Pediatr Blood Cancer, vol.64, 2017.

R. Van-litsenburg, J. Huisman, R. Pieters, C. Verhaak, G. Kaspers et al., Determinants of quality of life during induction therapy in pediatric acute lymphoblastic leukemia. Support Care Cancer Off J Multinatl Assoc Support Care Cancer, vol.22, pp.3235-3277, 2014.

J. E. Fardell, J. Vetsch, T. Trahair, M. K. Mateos, M. A. Grootenhuis et al., Healthrelated quality of life of children on treatment for acute lymphoblastic leukemia: A systematic review. Pediatr Blood Cancer, vol.64, 2017.

J. M. Valderas, A. Kotzeva, M. Espallargues, G. Guyatt, C. E. Ferrans et al., The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res Int J Qual Life Asp Treat Care Rehabil, vol.17, pp.179-93, 2008.

S. Marshall, K. Haywood, and R. Fitzpatrick, Impact of patient-reported outcome measures on routine practice: a structured review, J Eval Clin Pract, vol.12, issue.5, pp.559-68, 2006.

E. E. Takeuchi, A. Keding, N. Awad, U. Hofmann, L. J. Campbell et al., Impact of patient-reported outcomes in oncology: a longitudinal analysis of patientphysician communication, J Clin Oncol Off J Am Soc Clin Oncol, vol.29, issue.21, pp.2910-2917, 2011.

E. Basch, A. M. Deal, M. G. Kris, H. I. Scher, C. A. Hudis et al., Symptom Monitoring With Patient-Reported Outcomes During Routine Cancer Treatment: A Randomized Controlled Trial, J Clin Oncol Off J Am Soc Clin Oncol, vol.34, issue.6, pp.557-65, 2016.

P. S. Hinds, J. Brandon, C. Allen, N. Hijiya, R. Newsome et al., Patient-reported outcomes in end-of-life research in pediatric oncology, J Pediatr Psychol, vol.32, issue.9, pp.1079-88, 2007.

L. Sung, R. J. Klaassen, D. Dix, S. Pritchard, R. Yanofsky et al., Identification of paediatric cancer patients with poor quality of life, Br J Cancer, vol.100, issue.1, pp.82-90, 2009.

A. R. Rosenberg, L. Orellana, C. Ullrich, T. Kang, J. R. Geyer et al., Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study, J Pain Symptom Manage, vol.52, issue.2, pp.243-53, 2016.

D. Tomlinson, L. L. Dupuis, P. Gibson, D. L. Johnston, C. Portwine et al., Initial development of the Symptom Screening in Pediatrics Tool (SSPedi). Support Care Cancer Off J Multinatl Assoc Support Care Cancer, vol.22, pp.71-76, 2014.

C. O'sullivan, L. L. Dupuis, P. Gibson, D. L. Johnston, C. Baggott et al., Refinement of the symptom screening in pediatrics tool (SSPedi), Br J Cancer, vol.111, issue.7, pp.1262-1270, 2014.

C. O'sullivan, L. Dupuis, L. Gibson, P. Johnston, D. L. Baggott et al., Evaluation of the electronic self-report Symptom Screening in Pediatrics Tool (SSPedi), BMJ Support Palliat Care, vol.8, issue.1, pp.110-116, 2018.

J. J. Collins, T. D. Devine, G. S. Dick, E. A. Johnson, H. A. Kilham et al., The measurement of symptoms in young children with cancer: the validation of the Memorial Symptom Assessment Scale in children aged 7-12, J Pain Symptom Manage, vol.23, issue.1, pp.10-16, 2002.

J. W. Varni, T. M. Burwinkle, E. R. Katz, K. Meeske, and P. Dickinson, The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module, Cancer, vol.94, issue.7, pp.2090-106, 2002.

J. W. Varni, C. A. Limbers, and T. M. Burwinkle, How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes, vol.5, p.1, 2007.

L. C. Pinheiro, M. Mcfatrich, N. Lucas, J. S. Walker, J. S. Withycombe et al., Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review, Qual Life Res Int J Qual Life Asp Treat Care Rehabil, vol.27, issue.2, pp.291-319, 2018.

P. Upton, J. Lawford, and C. Eiser, Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res Int J Qual Life Asp Treat Care Rehabil, vol.17, pp.895-913, 2008.

I. Huang, L. A. Thompson, Y. Chi, C. A. Knapp, D. A. Revicki et al., The linkage between pediatric quality of life and health conditions: establishing clinically meaningful cutoff scores for the PedsQL, Value Health J Int Soc Pharmacoeconomics Outcomes Res, vol.12, issue.5, pp.773-81, 2009.

J. Kim, H. Chung, D. Amtmann, R. Salem, R. Park et al., Symptoms and quality of life indicators among children with chronic medical conditions, Disabil Health J, vol.7, issue.1, pp.96-104, 2014.

L. L. Dupuis, D. L. Johnston, C. Baggott, S. Hyslop, D. Tomlinson et al., Validation of the Symptom Screening in Pediatrics Tool in Children Receiving Cancer Treatments, J Natl Cancer Inst, 2017.

D. Tomlinson, P. S. Hinds, U. Bartels, E. Hendershot, and L. Sung, Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure, J Clin Oncol Off J Am Soc Clin Oncol, vol.29, issue.6, pp.639-684, 2011.

L. Jalmsell, U. Kreicbergs, E. Onelöv, G. Steineck, and J. Henter, Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up, Pediatrics, vol.117, issue.4, pp.1314-1334, 2006.

D. Tomlinson, U. Bartels, J. Gammon, P. S. Hinds, J. Volpe et al., Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals, CMAJ Can Med Assoc J J Assoc Medicale Can, vol.183, issue.17, pp.1252-1258, 2011.

P. S. Hinds, J. Wang, E. D. Stern, C. F. Macpherson, C. M. Wharton et al., Voices of children and adolescents on phase 1 or phase 2 cancer trials: A new trial endpoint? Cancer, vol.123, pp.3799-806, 2017.

L. Sung, Priorities for quality care in pediatric oncology supportive care, J Oncol Pract, vol.11, issue.3, pp.187-196, 2015.

C. Yeh, C. Chang, and P. Chang, Evaluating quality of life in children with cancer using children's self-reports and parent-proxy reports, Nurs Res, vol.54, issue.5, pp.354-62, 2005.

K. Russell, M. Hudson, A. Long, and S. Phipps, Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports, Cancer, vol.106, issue.10, pp.2267-74, 2006.

Y. H. Vance, R. C. Morse, M. E. Jenney, and C. Eiser, Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health, J Child Psychol Psychiatry, vol.42, issue.5, pp.661-668, 2001.

S. B. Detmar, M. J. Muller, J. H. Schornagel, L. Wever, and N. K. Aaronson, Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial, JAMA, vol.288, issue.23, pp.3027-3061, 2002.

S. B. Detmar, M. J. Muller, J. H. Schornagel, L. Wever, and N. K. Aaronson, Role of healthrelated quality of life in palliative chemotherapy treatment decisions, J Clin Oncol Off J Am Soc Clin Oncol, vol.20, issue.4, pp.1056-62, 2002.

G. Velikova, L. Booth, A. B. Smith, P. M. Brown, P. Lynch et al., Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial, J Clin Oncol Off J Am Soc Clin Oncol, vol.22, issue.4, pp.714-738, 2004.

S. Mitchell, A. Morris, K. Bennett, L. Sajid, and J. Dale, Specialist paediatric palliative care services: what are the benefits?, Arch Dis Child, vol.102, issue.10, pp.923-932, 2017.

I. M. Lahart, G. S. Metsios, A. M. Nevill, and A. R. Carmichael, Physical activity, risk of death and recurrence in breast cancer survivors: A systematic review and meta-analysis of epidemiological studies, Acta Oncol Stockh Swed, vol.54, issue.5, pp.635-54, 2015.

C. Winter, C. Müller, M. Brandes, A. Brinkmann, C. Hoffmann et al., Level of activity in children undergoing cancer treatment. Pediatr Blood Cancer, vol.53, pp.438-481, 2009.

S. Aznar, A. L. Webster, S. Juan, A. F. Chamorro-viña, C. Maté-muñoz et al., Physical activity during treatment in children with leukemia: a pilot study, Appl Physiol Nutr Metab Physiol Appl Nutr Metab, vol.31, issue.4, pp.407-420, 2006.

S. Y. Tan, B. K. Poh, H. X. Chong, M. N. Ismail, J. Rahman et al., Physical activity of pediatric patients with acute leukemia undergoing induction or consolidation chemotherapy, Leuk Res, vol.37, issue.1, pp.14-20, 2013.

F. T. Baumann, W. Bloch, and J. Beulertz, Clinical exercise interventions in pediatric oncology: a systematic review, Pediatr Res, vol.74, issue.4, pp.366-74, 2013.

G. Zucchetti, F. Rossi, C. Vina, C. Bertorello, N. Fagioli et al., Exercise program for children and adolescents with leukemia and lymphoma during treatment: A comprehensive review, Pediatr Blood Cancer, 2018.

, / Accord CPP