Processus pour le développement d’une stratégie d’évaluation de la qualité de vie en cancer avancé pédiatrique
Process for Developing a Quality of Life Assessment Strategy in Advanced Pediatric Cancer
Article ID:
3805
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Abstract
In pediatric advanced cancer, i.e., when cancer-targeted treatments are not effective, care provided to patients is of palliative nature. It aims at limiting symptoms and optimizing quality of life (QoL). To orient care, it is necessary to know and measure what is really important for young people. Unfortunately, tools are still scarce in this context. The aim of this paper is to describe the development process of a new QoL assessment method, the Advance QoL program. This is specifically designed for the clinical context of pediatric advanced cancer. Three previous studies carried out by our team identified seven important QoL domains for this population. We developed a tool named Advance QoL—parent/caregiver version. A current study aims to develop self-reported versions of the Advance QoL for children (8–12 years) and adolescents (13–18 years) with advanced cancer. In the very near future, the Advance QoL tool will be available in three versions (parents/caregivers, children, and adolescents) ready to be tested in validation studies. Regular assessment of the QoL of young people with cancer is a central process in defining targets for care and should be carried out throughout the trajectory, including when cancer is at an advanced stage, i.e., when no standard treatment options are available.
Résumé
En contexte de cancer avancé pédiatrique, c’est-à-dire quand les traitements visant le cancer ne sont pas efficaces, les soins offerts aux patients ont une visée palliative pour limiter les symptômes et optimiser la qualité de vie (QdV). Pour orienter ces soins, il est nécessaire de connaître et mesurer ce qui est important pour les jeunes dans cette situation. Malheureusement, il existe très peu d’outils disponibles. L’objectif de cet article est de décrire le processus de développement d’une nouvelle méthode d’évaluation de la QdV qui s’adresse spécifiquement au contexte de cancer avancé pédiatrique, le programme Advance QoL. Trois études précédentes réalisées dans notre équipe ont permis d’identifier sept domaines de QdV importants auprès de cette population et de développer l’outil Advance Quality of Life (QoL)—version parents/soignants. L’étude en cours vise à développer des versions autorapportées de l’outil Advance QoL pour les enfants (8–12 ans) et les adolescents (13–18 ans) atteints de cancer avancé. À l’issue de cette étape, l’outil Advance QoL sera disponible en trois versions (parents/soignants, enfants et adolescents) qui seront testées dans des études de validation. L’évaluation régulière de la QdV des jeunes atteints de cancer est un processus central dans le but de définir des cibles pour l’activité soignante et devrait être réalisée tout au long de la trajectoire, incluant le cancer avancé.
References
1.Comité Consultatif des Statistiques Canadiennes sur le Cancer, en Collaboration avec la Société Canadienne du Cancer, Statistique Canada et l’Agence de la Santé Publique du Canada. Statistiques Canadiennes sur le cancer. 2021. Novembre. Consultable sur : http://cancer.ca/Canadian-Cancer-Statistics-2021-FR. [Accessed 2021]. [Google Scholar]
2.Ward ZJ, Yeh JM, Bhakta N, Frazier AL, Girardi F, Atun R. Global childhood cancer survival estimates and priority-setting: a simulation-based analysis. Lancet Oncol. 2019;20(7):972–83. doi:10.1016/S1470-2045(19)30273-6. [Google Scholar] [PubMed] [CrossRef]
3.de Vries MC, Wit JM, Engberts DP, Kaspers GJ, van Leeuwen E. Pediatric oncologists attitudes towards involving adolescents in decision-making concerning research participation. Pediatr Blood Cancer. 2010;55(1):123–8. [Google Scholar] [PubMed]
4.Société canadienne du cancer. Cancer avancé. Consultable sur : https://cancer.ca/fr/living-with-cancer/advanced-cancer. [Accessed 2021]. [Google Scholar]
5.Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L, et al. Research priorities in pediatric palliative care. J Pediatr. 2015;167(2):467–70.E3. doi:10.1016/j.jpeds.2015.05.002. [Google Scholar] [PubMed] [CrossRef]
6.Carnevale FA. Conclusion : Une perspective éthique sur le soutien aux familles d’enfants atteints de conditions chroniques complexes. In: Mongeau S, Champagne M, Lussier L, editors. Le so utien aux familles d’enfants gravement malades : regards sur des pratiques novatrices. Collection Problèmes sociaux et interventions sociales. vol. 61, Québec, Canada: Presses de l’Université du Québec ; 2014. p. 217. [Google Scholar]
7.Friedel M, Aujoulat I, Dubois A, Degryse J. Instruments to measure outcomes in pediatric palliative care: a systematic review. Pediatr. 2019;143(1):e20182379. doi:10.1542/peds.2018-2379. [Google Scholar] [PubMed] [CrossRef]
8.Kazak AE, Abrams AN, Banks J, Christofferson J, DiDonato S, Grootenhuis MA, et al. Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer. 2015;62:426–59. doi:10.1002/pbc.25730. [Google Scholar] [PubMed] [CrossRef]
9.Wiener L, Kupst MJ, Pelletier W, Kazak AE, Thompson AL. Tools to guide the identification and implementation of care consistent with the psychosocial standards of care. Pediatr Blood Cancer. 2020;67(9):e28586. doi:10.1002/pbc.28586. [Google Scholar] [PubMed] [CrossRef]
10.Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE. Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use. Palliat Med. 2016;30(10):935–49. doi:10.1177/0269216316649155. [Google Scholar] [PubMed] [CrossRef]
11.Cataudella D, Morley TE, Nesin A, Fernandez CV, Johnston DL, Sung L, et al. Development of a quality of life instrument for children with advanced cancer: the pediatric advanced care quality of life scale (PAC-QoL). Pediatr Blood Cancer. 2014;61(10):1840–5. doi:10.1002/pbc.25115. [Google Scholar] [PubMed] [CrossRef]
12.Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126–39. [Google Scholar] [PubMed]
13.Huang IC, Shenkman EA, Madden VL, Vadaparampil S, Quinn G, Knapp CA. Measuring quality of life in pediatric palliative care: challenges and potential solutions. Palliat Med. 2010;24(2):175–82. doi:10.1177/0269216309352418. [Google Scholar] [PubMed] [CrossRef]
14.Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol. 2015;10(17):1928–35. doi:10.1200/jco.2014.59.1222. [Google Scholar] [PubMed] [CrossRef]
15.Anthony SJ, Selkirk E, Sung L, Klaassen RJ, Dix D, Klassen AF. Quality of life of pediatric oncology patients: do patient-reported outcome instruments measure what matters to patients? Qual Life Res. 2017;26(2):273–81. doi:10.1007/s11136-016-1393-4. [Google Scholar] [PubMed] [CrossRef]
16.Arbuckle R, Abetz-Webb L. “Not just little adults”: qualitative methods to support the development of pediatric patient-reported outcomes. Patient. 2013;6(3):143–59. doi:10.1007/s40271-013-0022-3. [Google Scholar] [PubMed] [CrossRef]
17.Food and Drug Administration. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes. 2006;4(1):1–20. doi:10.1186/1477-7525-4-79. [Google Scholar] [PubMed] [CrossRef]
18.Bradlyn AS, Ritchey AK, Harris CV, Moore IM, O'Brien RT, Parsons SK, et al. Quality of life research in pediatric oncology. Research methods and barriers. Cancer. 1996;78(6):1333–9. [Google Scholar] [PubMed]
19.Geisen E, Bergstrom JR. Usability testing for survey research. Cambridge, MA: Morgan Kaufmann. Available from: https://www.sciencedirect.com/book/9780128036563/usability-testing-for-survey-research. [Accessed 2017]. [Google Scholar]
20.Soulas T, Brédart A. Qualité de vie et santé. In: Sultan S, Varescon I, editors. Psychologie de la Santé. vol. 17–40. Paris, France: Presses Universitaires de France; 2012. [Google Scholar]
21.Coombes L, Bristowe K, Ellis-Smith C, Aworinde J, Fraser LK, Downing J, et al. Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Qual Life Res. 2021;30(7):1803–32. doi:10.1007/s11136-021-02814-4. [Google Scholar] [PubMed] [CrossRef]
22.Willis GB. Cognitive interviewing: a tool for improving questionnaire design. Thousand Oaks, CA: Sage Publications; 2005. [Google Scholar]
23.Knafl K, Deatrick J, Gallo A, Holcombe G, Bakitas M, Dixon J, et al. The analysis and interpretation of cognitive interviews for instrument development. Res Nurs Health. 2007;30(2):224–34. doi:10.1002/nur.20195. [Google Scholar] [PubMed] [CrossRef]
24.Bruchez C, Roux P, Santiago Delefosse M. Chapitre 10. Validité et qualité en recherche qualitative : aspects pratiques. In: Santiago Delefosse M, del Rio Carral M, editors. Les méthodes qualitatives en psychologie et sciences humaines de la santé. vol. 225–41. Malakoff, France: Dunod; 2017. [Google Scholar]
25.Carter SL, Wheeler JJ. The social validity manual: subjective evaluation of interventions. 2 ed. London: Academic Press. https://www.sciencedirect.com/science/book/9780128160046. [Accessed 2019]. [Google Scholar]
26.Common EA, Lane KL. Chapitre 4. Social validity assessment. In: Luiselli JK, editor. Applied behavior analysis advanced guidebook. London, UK: Academic Press; 2017. p. 73–92. [Google Scholar]
27.Foster SL, Mash EJ. Assessing social validity in clinical treatment research: issues and procedures. J Consult Clin Psychol. 1999;67(3):308–19. doi:10.1037//0022-006x.67.3.308. [Google Scholar] [PubMed] [CrossRef]
28.Klassen AF, Strohm SJ, Maurice-Stam H, Grootenhuis MA. Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures. Support Care Cancer. 2010;18(9):1207–17. [Google Scholar] [PubMed]
29.Robichaud L-A, Olivier-D’Avignon M, Duval M, Tyo-Gomez M, Leclerc A-A, Michon B, et al. (2023). Quality of life assessment in childhood advanced cancer: development of self-reported versions of advance QoL. International Psycho-Oncology Society (IPOS); Milan, Italy. [Google Scholar]
30.Avoine-Blondin J, Parent V, Lahaye M, Humbert N, Duval M, Sultan S. Identifying domains of quality of life in children with cancer undergoing palliative care: a qualitative study with professionals. Palliat Support Care. 2017;15(5):565–74. doi:10.1017/S1478951516001048. [Google Scholar] [PubMed] [CrossRef]
31.Avoine-Blondin J, Dumont E, Marquis MA, Duval M, Sultan S. Quality of life in childhood advanced cancer: from conceptualization to assessment with the advance QoL tool. BMC Palliat Care. 2022;21(1):138. doi:10.1186/s12904-022-01025-z. [Google Scholar] [PubMed] [CrossRef]
32.Avoine-Blondin J, Parent V, Fasse L, Lopez C, Humbert N, et al. How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement? BMC Palliat Care. 2018;17(1):71. doi:10.1186/s12904-018-0328-y. [Google Scholar] [PubMed] [CrossRef]
33.Eiser C. Children’s quality of life measures. Arch Dis Child. 1997;77(4):350–4. [Google Scholar] [PubMed]
34.Huang IC, Wen PS, Revicki DA, Shenkman EA. Quality of life measurement for children with life-threatening conditions: limitations and a new framework. Child Indic Res. 2011;4(1):145–60. doi:10.1007/s12187-010-9079-x. [Google Scholar] [PubMed] [CrossRef]
35.Hinds PS, Menard JC, Jacobs SS. The child’s voice in pediatric palliative and end-of-life care. Prog Palliat Care. 2012;20(6):337–42. doi:10.1179/1743291X12Y.0000000035. [Google Scholar] [CrossRef]
36.Abate C, Lippé S, Bertout L, Drouin S, Krajinovic M, Rondeau É., et al. Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father-mother-child triads in children successfully treated for leukemia. Pediatr Blood Cancer. 2018;65(2):e26840. doi:10.1002/pbc.26840. [Google Scholar] [PubMed] [CrossRef]
37.Weaver MS, Heinze KE, Bell CJ, Wiener L, Garee AM, Kelly KP, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review. Palliat Med. 2016;30(3):212–23. doi:10.1177/0269216315583446. [Google Scholar] [PubMed] [CrossRef]
38.Influence communication. Scolarius: mesurer pour mieux se comprendre. Consultable sur : https://www.scolarius.com. [Accessed 2023]. [Google Scholar]
39.Irwin DE, Varni JW, Yeatts K, DeWalt DA. Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health Qual Life Outcomes. 2009;7(1):3. doi:10.1186/1477-7525-7-3. [Google Scholar] [PubMed] [CrossRef]
40.Kazdin A. Social validity. In: Everitt B, Howell D, editors. Encyclopedia of statistics in behavioral science. Hoboken, NJ: Wiley; 2005. p. 1875–6. [Google Scholar]
41.Manne S, Mee L, Bartell A, Sands S, Kashy DA. A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation. J Consult Clin Psychol. 2016;84(5):389–401. doi:10.1037/ccp0000087. [Google Scholar] [PubMed] [CrossRef]
42.Antunes B, Harding R, Higginson IJ, Euroimpact. Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2014;28(2):158–75. doi:10.1177/0269216313491619. [Google Scholar] [PubMed] [CrossRef]
43.Carnevale FA. Ethical challenges in pediatric palliative care medicine. Méd Palliative: Soins Support—Accompagnement—Éthique. 2012;11(5):246–51. doi:10.1016/j.medpal.2012.08.001. [Google Scholar] [CrossRef]
44.Carnevale FA. Listening authentically to youthful voices: a conception of the moral agency of children. In: Rodney PA, Starzomski RC, Storch JL, editors. Toward a moral horizon: nursing ethics for leadership and practice. vol. 559, 2 ed. Canada: Pearson; 2012. p. 315–32. [Google Scholar]
45.Gaucher N, Payot A. Focusing on relationships, not information, respects autonomy during antenatal consultations. Acta Paediatrica. 2017;106(1):14–20. doi:10.1111/apa.13590. [Google Scholar] [PubMed] [CrossRef]
46.Walter JK, Ross LF. Relational autonomy: moving beyond the limits of isolated individualism. Pediatrics. 2014;133:16–23. doi:10.1542/peds.2013-3608D. [Google Scholar] [PubMed] [CrossRef]
47.Bluebond-Langner M. The private worlds of dying children. Princeton, NJ: Princeton University Press; 1978. doi: 10.1515/9780691213088 [Google Scholar] [CrossRef]
48.Wangmo T, de Clercq E, Ruhe KM, Beck-Popovic M, Rischewski J, Angst R, et al. Better to know than to imagine: including children in their health care. AJOB Empir Bioethics. 2017;8(1):11–20. doi:10.1080/23294515.2016.1207724. [Google Scholar] [PubMed] [CrossRef]
49.Jordan M, Keefer PM, Lee YA, Meade K, Snaman JM, Kamal A, et al. Top ten tips palliative care clinicians should know about caring for children. J Palliat Med. 2018;21(12):1783–9. doi:10.1089/jpm.2018.0482. [Google Scholar] [PubMed] [CrossRef]
50.Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. J Clin Oncol. 2020;38(9):954–62. doi:10.1200/JCO.18.02331. [Google Scholar] [PubMed] [CrossRef]
2.Ward ZJ, Yeh JM, Bhakta N, Frazier AL, Girardi F, Atun R. Global childhood cancer survival estimates and priority-setting: a simulation-based analysis. Lancet Oncol. 2019;20(7):972–83. doi:10.1016/S1470-2045(19)30273-6. [Google Scholar] [PubMed] [CrossRef]
3.de Vries MC, Wit JM, Engberts DP, Kaspers GJ, van Leeuwen E. Pediatric oncologists attitudes towards involving adolescents in decision-making concerning research participation. Pediatr Blood Cancer. 2010;55(1):123–8. [Google Scholar] [PubMed]
4.Société canadienne du cancer. Cancer avancé. Consultable sur : https://cancer.ca/fr/living-with-cancer/advanced-cancer. [Accessed 2021]. [Google Scholar]
5.Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L, et al. Research priorities in pediatric palliative care. J Pediatr. 2015;167(2):467–70.E3. doi:10.1016/j.jpeds.2015.05.002. [Google Scholar] [PubMed] [CrossRef]
6.Carnevale FA. Conclusion : Une perspective éthique sur le soutien aux familles d’enfants atteints de conditions chroniques complexes. In: Mongeau S, Champagne M, Lussier L, editors. Le so utien aux familles d’enfants gravement malades : regards sur des pratiques novatrices. Collection Problèmes sociaux et interventions sociales. vol. 61, Québec, Canada: Presses de l’Université du Québec ; 2014. p. 217. [Google Scholar]
7.Friedel M, Aujoulat I, Dubois A, Degryse J. Instruments to measure outcomes in pediatric palliative care: a systematic review. Pediatr. 2019;143(1):e20182379. doi:10.1542/peds.2018-2379. [Google Scholar] [PubMed] [CrossRef]
8.Kazak AE, Abrams AN, Banks J, Christofferson J, DiDonato S, Grootenhuis MA, et al. Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer. 2015;62:426–59. doi:10.1002/pbc.25730. [Google Scholar] [PubMed] [CrossRef]
9.Wiener L, Kupst MJ, Pelletier W, Kazak AE, Thompson AL. Tools to guide the identification and implementation of care consistent with the psychosocial standards of care. Pediatr Blood Cancer. 2020;67(9):e28586. doi:10.1002/pbc.28586. [Google Scholar] [PubMed] [CrossRef]
10.Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE. Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use. Palliat Med. 2016;30(10):935–49. doi:10.1177/0269216316649155. [Google Scholar] [PubMed] [CrossRef]
11.Cataudella D, Morley TE, Nesin A, Fernandez CV, Johnston DL, Sung L, et al. Development of a quality of life instrument for children with advanced cancer: the pediatric advanced care quality of life scale (PAC-QoL). Pediatr Blood Cancer. 2014;61(10):1840–5. doi:10.1002/pbc.25115. [Google Scholar] [PubMed] [CrossRef]
12.Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126–39. [Google Scholar] [PubMed]
13.Huang IC, Shenkman EA, Madden VL, Vadaparampil S, Quinn G, Knapp CA. Measuring quality of life in pediatric palliative care: challenges and potential solutions. Palliat Med. 2010;24(2):175–82. doi:10.1177/0269216309352418. [Google Scholar] [PubMed] [CrossRef]
14.Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol. 2015;10(17):1928–35. doi:10.1200/jco.2014.59.1222. [Google Scholar] [PubMed] [CrossRef]
15.Anthony SJ, Selkirk E, Sung L, Klaassen RJ, Dix D, Klassen AF. Quality of life of pediatric oncology patients: do patient-reported outcome instruments measure what matters to patients? Qual Life Res. 2017;26(2):273–81. doi:10.1007/s11136-016-1393-4. [Google Scholar] [PubMed] [CrossRef]
16.Arbuckle R, Abetz-Webb L. “Not just little adults”: qualitative methods to support the development of pediatric patient-reported outcomes. Patient. 2013;6(3):143–59. doi:10.1007/s40271-013-0022-3. [Google Scholar] [PubMed] [CrossRef]
17.Food and Drug Administration. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes. 2006;4(1):1–20. doi:10.1186/1477-7525-4-79. [Google Scholar] [PubMed] [CrossRef]
18.Bradlyn AS, Ritchey AK, Harris CV, Moore IM, O'Brien RT, Parsons SK, et al. Quality of life research in pediatric oncology. Research methods and barriers. Cancer. 1996;78(6):1333–9. [Google Scholar] [PubMed]
19.Geisen E, Bergstrom JR. Usability testing for survey research. Cambridge, MA: Morgan Kaufmann. Available from: https://www.sciencedirect.com/book/9780128036563/usability-testing-for-survey-research. [Accessed 2017]. [Google Scholar]
20.Soulas T, Brédart A. Qualité de vie et santé. In: Sultan S, Varescon I, editors. Psychologie de la Santé. vol. 17–40. Paris, France: Presses Universitaires de France; 2012. [Google Scholar]
21.Coombes L, Bristowe K, Ellis-Smith C, Aworinde J, Fraser LK, Downing J, et al. Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Qual Life Res. 2021;30(7):1803–32. doi:10.1007/s11136-021-02814-4. [Google Scholar] [PubMed] [CrossRef]
22.Willis GB. Cognitive interviewing: a tool for improving questionnaire design. Thousand Oaks, CA: Sage Publications; 2005. [Google Scholar]
23.Knafl K, Deatrick J, Gallo A, Holcombe G, Bakitas M, Dixon J, et al. The analysis and interpretation of cognitive interviews for instrument development. Res Nurs Health. 2007;30(2):224–34. doi:10.1002/nur.20195. [Google Scholar] [PubMed] [CrossRef]
24.Bruchez C, Roux P, Santiago Delefosse M. Chapitre 10. Validité et qualité en recherche qualitative : aspects pratiques. In: Santiago Delefosse M, del Rio Carral M, editors. Les méthodes qualitatives en psychologie et sciences humaines de la santé. vol. 225–41. Malakoff, France: Dunod; 2017. [Google Scholar]
25.Carter SL, Wheeler JJ. The social validity manual: subjective evaluation of interventions. 2 ed. London: Academic Press. https://www.sciencedirect.com/science/book/9780128160046. [Accessed 2019]. [Google Scholar]
26.Common EA, Lane KL. Chapitre 4. Social validity assessment. In: Luiselli JK, editor. Applied behavior analysis advanced guidebook. London, UK: Academic Press; 2017. p. 73–92. [Google Scholar]
27.Foster SL, Mash EJ. Assessing social validity in clinical treatment research: issues and procedures. J Consult Clin Psychol. 1999;67(3):308–19. doi:10.1037//0022-006x.67.3.308. [Google Scholar] [PubMed] [CrossRef]
28.Klassen AF, Strohm SJ, Maurice-Stam H, Grootenhuis MA. Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures. Support Care Cancer. 2010;18(9):1207–17. [Google Scholar] [PubMed]
29.Robichaud L-A, Olivier-D’Avignon M, Duval M, Tyo-Gomez M, Leclerc A-A, Michon B, et al. (2023). Quality of life assessment in childhood advanced cancer: development of self-reported versions of advance QoL. International Psycho-Oncology Society (IPOS); Milan, Italy. [Google Scholar]
30.Avoine-Blondin J, Parent V, Lahaye M, Humbert N, Duval M, Sultan S. Identifying domains of quality of life in children with cancer undergoing palliative care: a qualitative study with professionals. Palliat Support Care. 2017;15(5):565–74. doi:10.1017/S1478951516001048. [Google Scholar] [PubMed] [CrossRef]
31.Avoine-Blondin J, Dumont E, Marquis MA, Duval M, Sultan S. Quality of life in childhood advanced cancer: from conceptualization to assessment with the advance QoL tool. BMC Palliat Care. 2022;21(1):138. doi:10.1186/s12904-022-01025-z. [Google Scholar] [PubMed] [CrossRef]
32.Avoine-Blondin J, Parent V, Fasse L, Lopez C, Humbert N, et al. How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement? BMC Palliat Care. 2018;17(1):71. doi:10.1186/s12904-018-0328-y. [Google Scholar] [PubMed] [CrossRef]
33.Eiser C. Children’s quality of life measures. Arch Dis Child. 1997;77(4):350–4. [Google Scholar] [PubMed]
34.Huang IC, Wen PS, Revicki DA, Shenkman EA. Quality of life measurement for children with life-threatening conditions: limitations and a new framework. Child Indic Res. 2011;4(1):145–60. doi:10.1007/s12187-010-9079-x. [Google Scholar] [PubMed] [CrossRef]
35.Hinds PS, Menard JC, Jacobs SS. The child’s voice in pediatric palliative and end-of-life care. Prog Palliat Care. 2012;20(6):337–42. doi:10.1179/1743291X12Y.0000000035. [Google Scholar] [CrossRef]
36.Abate C, Lippé S, Bertout L, Drouin S, Krajinovic M, Rondeau É., et al. Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father-mother-child triads in children successfully treated for leukemia. Pediatr Blood Cancer. 2018;65(2):e26840. doi:10.1002/pbc.26840. [Google Scholar] [PubMed] [CrossRef]
37.Weaver MS, Heinze KE, Bell CJ, Wiener L, Garee AM, Kelly KP, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review. Palliat Med. 2016;30(3):212–23. doi:10.1177/0269216315583446. [Google Scholar] [PubMed] [CrossRef]
38.Influence communication. Scolarius: mesurer pour mieux se comprendre. Consultable sur : https://www.scolarius.com. [Accessed 2023]. [Google Scholar]
39.Irwin DE, Varni JW, Yeatts K, DeWalt DA. Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health Qual Life Outcomes. 2009;7(1):3. doi:10.1186/1477-7525-7-3. [Google Scholar] [PubMed] [CrossRef]
40.Kazdin A. Social validity. In: Everitt B, Howell D, editors. Encyclopedia of statistics in behavioral science. Hoboken, NJ: Wiley; 2005. p. 1875–6. [Google Scholar]
41.Manne S, Mee L, Bartell A, Sands S, Kashy DA. A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation. J Consult Clin Psychol. 2016;84(5):389–401. doi:10.1037/ccp0000087. [Google Scholar] [PubMed] [CrossRef]
42.Antunes B, Harding R, Higginson IJ, Euroimpact. Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2014;28(2):158–75. doi:10.1177/0269216313491619. [Google Scholar] [PubMed] [CrossRef]
43.Carnevale FA. Ethical challenges in pediatric palliative care medicine. Méd Palliative: Soins Support—Accompagnement—Éthique. 2012;11(5):246–51. doi:10.1016/j.medpal.2012.08.001. [Google Scholar] [CrossRef]
44.Carnevale FA. Listening authentically to youthful voices: a conception of the moral agency of children. In: Rodney PA, Starzomski RC, Storch JL, editors. Toward a moral horizon: nursing ethics for leadership and practice. vol. 559, 2 ed. Canada: Pearson; 2012. p. 315–32. [Google Scholar]
45.Gaucher N, Payot A. Focusing on relationships, not information, respects autonomy during antenatal consultations. Acta Paediatrica. 2017;106(1):14–20. doi:10.1111/apa.13590. [Google Scholar] [PubMed] [CrossRef]
46.Walter JK, Ross LF. Relational autonomy: moving beyond the limits of isolated individualism. Pediatrics. 2014;133:16–23. doi:10.1542/peds.2013-3608D. [Google Scholar] [PubMed] [CrossRef]
47.Bluebond-Langner M. The private worlds of dying children. Princeton, NJ: Princeton University Press; 1978. doi: 10.1515/9780691213088 [Google Scholar] [CrossRef]
48.Wangmo T, de Clercq E, Ruhe KM, Beck-Popovic M, Rischewski J, Angst R, et al. Better to know than to imagine: including children in their health care. AJOB Empir Bioethics. 2017;8(1):11–20. doi:10.1080/23294515.2016.1207724. [Google Scholar] [PubMed] [CrossRef]
49.Jordan M, Keefer PM, Lee YA, Meade K, Snaman JM, Kamal A, et al. Top ten tips palliative care clinicians should know about caring for children. J Palliat Med. 2018;21(12):1783–9. doi:10.1089/jpm.2018.0482. [Google Scholar] [PubMed] [CrossRef]
50.Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. J Clin Oncol. 2020;38(9):954–62. doi:10.1200/JCO.18.02331. [Google Scholar] [PubMed] [CrossRef]
Published
2024-08-06
How to Cite
Robichaud, L.-A., Olivier-D’Avignon, M., Felipe, J., Ehrenfeld, H. F. T., Marquis, M.-A., Michon, B., Rondeau, Émélie, Tyo-Gomez, M., Duval, M., & Sultan, S. (2024). Processus pour le développement d’une stratégie d’évaluation de la qualité de vie en cancer avancé pédiatrique. Psycho-Oncologie, 18(2). Retrieved from https://ojs.piscomed.com/index.php/PO/article/view/3805
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