To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS).
Background:
Instruments in French used to measure outcomes in pediatric palliative care are lacking.
Methods:
After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs.
Results:
Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2.
Discussion:
The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
Abu-Saad HuijerH, BeniniF, CraigF, et al.: Steering Committee of the EAPC task force on palliative care for children and adolescents: IMPaCCT. Standards for paediatric palliative care in Europe. Eur J Palliat Care, 2007; 14:109–114.
3.
HardingR, WolfeJ, BakerJN: Outcome measurement for children and young people. J Palliat Med, 2017; 20:313.
4.
DowningJ, NamisangoE, HardingR: Outcomes measurement in paediatric palliative care: Lessons from the past and future developments. Ann Palliat Med, 2018; 7Suppl 3:S151–S163.
5.
KnappC, MaddenV: Conducting outcomes research in pediatric palliative care. Am J Hosp Palliat Care, 2010; 27:277–281.
6.
HuangIC, WenPS, RevickiDA, et al.: Quality of life measurement for children with life-threatening conditions: Limitations and a new framework. Child Indic Res, 2011; 4:145–160.
7.
PeakeJN, BeechamE, OostendorpLJM, et al.: Research barriers in children and young people with life-limiting conditions: A survey. BMJ Support Palliat Care, 2018; pii:bmjspcare-2018-001521.
8.
WeaverMS, DarnallC, BaceS, et al.: Trending longitudinal agreement between parent and child perceptions of quality of life for pediatric palliative care patients. Children (Basel), 2018; 8:pii: E65.
9.
WolfeJ, SidenH: Research in paediatric palliative care. In: GoldmanA, HainR, Liben S (eds): Oxford Textbook of Palliative Care for Children. Oxford: Oxford University Press, 2012, pp. 441–457.
10.
HardingR, ChambersL, Bluebond-LangnerM: Advancing the science of outcome measurement in paediatric palliative care. Int J Palliat Nurs, 2019; 25:72–79.
11.
African Palliative Care Association:. The APCA African Children's Palliative Outcome Scale (APCA CPOS) Manual. Kampala, Uganda: African Palliative Care Association, 2012.
FriedelM, BrichardB, FonteyneC, et al.: Building bridges, paediatric palliative care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014. BMC Palliat Care, 2018; 17:77.
14.
FriedelM, GilsonA, BouckenaereD, et al.: Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium. BMJ Paediatr Open, 2019; 3:e000547.
15.
HigginsonIJ, EvansCJ, GrandeG, et al.: MORECare. Evaluating complex interventions in end of life care: The MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med, 2013; 11:111.
16.
GyselsM, EvansCJ, LewisP: MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research. Palliat Med, 2013; 27;13:908–917.
17.
De VetHCW, TerweeCB, Mokkink LB (eds): Measurement in Medicine, 1st ed. Cambridge: Cambridge University Press, 2016.
18.
BauseweinC, DavesonBA, CurrowDC, et al.: EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services—Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med, 2016; 30:6–22.
19.
AbmaTA, PittensCA, VisseM, et al.: Patient involvement in research programming and implementation. A responsive evaluation of the Dialogue Model for research agenda setting. Health Expect, 2014; 18:2449–2464.
20.
AntunesB, DavesonB, RamsenthalerC, et al.: On behalf of the POS Development Team King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation. London: Kings College London, 2012.
21.
O'BoyleCA, McGeeH, HickeyA, et al.: Individual quality of life in patients undergoing hip replacement. Lancet, 1992; 2;339:1088–1091.
22.
HickeyAM, BuryG, O'BoyleCA, et al.: A new short form individual quality of life measure (SEIQoL-DW): Application in a cohort of individuals with HIV/AIDS. BMJ, 1996; 6;313:29–33.
23.
WagnerJ: Acceptability of the Schedule for the Evaluation of Individual Quality of Life-Direct Weight (SEIQoL-DW) in youth with type 1 diabetes. Qual Life Res, 2004; 13:1279–1285.
24.
VinsonJ, ShankL, ThomasPD, et al.: Self-generated domains of quality of life in children with and without cerebral palsy. J Dev Phys Disabil, 2010; 22:497–508.
25.
RodaryS, DauchyC, BeauvalletM, et al.: Intérêt de la mesure individualisée de la qualité de vie en oncologie: Utilisation du SEIQoL chez des patients traités pour tumeur neuro-endocrine. Revue Francophone de Psycho-Oncologie, 2005; 4:36–44.
26.
CohenR, LeisAM, KuhlD, et al.: QOLLTI-F: Measuring family carer quality of life. Palliat Med, 2006; 8:755–767.
27.
ZhangL, GallagherR, LowresN, et al.: Using the ‘think aloud’ technique to explore quality of life issues during standard quality-of-life questionnaires in patients with atrial fibrillation. Heart Lung Circ, 2017; 26:150–156.
28.
VerkuylM, HughesM, FyfeMC: Using think aloud in health assessment: A mixed-methods study. J Nurs Educ, 2018; 57:684–686.
29.
Lundgrén-LaineH, Salanterä S: Think-aloud technique and protocol analysis in clinical decision-making research. Qual Health Res, 2010; 20:565–575.
30.
MilesMB, HubermanM: Qualitative Data Analysis: A Sourcebook of New Methods. Thousand Oaks: SAGE, 1994.
31.
BradleyEH, CurryLA, DeversKL: Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res, 2007; 42:1758–1772.
32.
FriedelM, AujoulatI, DuboisAC, et al.: Instruments to measure outcomes in pediatric palliative care: A systematic review. Pediatrics, 2019; 143.
33.
CoombesLH, WisemanT, LucasG, et al.: Health-related quality-of-life outcomes measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliat Med, 2016; 30:935–949.
34.
HuangIC, ShenkmanEA, MaddenVL, et al.: Measuring quality of life in pediatric palliative care: Challenges and potential solutions. Palliat Med, 2010; 24:175–182.
35.
BakerJN, LevineDR, HindsPS, et al.: Research priorities in pediatric palliative care. J Pediatr, 2015; 167:467–470.e3.
36.
NamisangoE, BristoweK, AllsopMJ, et al.: Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. Patient, 2019; 12:15–55.
37.
AmbresinAE, BennettK, PattonGC, et al.: Assessment of youth-friendly health care: A systematic review of indicators drawn from young peoples' perspectives. J Adolesc Health, 2013; 52:670–681.
38.
GhirottoL, BusaniE, SalvatiM, et al.: Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research. Palliat Support Care, 2019; 17:107–118.
39.
BeechamE, LangnerR, HargraveD, et al.: Children's and parents' conceptualization of quality of life in children with brain tumors: A meta-ethnographic exploration. Qual Health Res, 2019; 29:55–68.
40.
BartonKS, TateT, LauN, et al.: “I'm Not a Spiritual Person.” How hope might facilitate conversations about spirituality among teens and young adults with cancer. J Pain Symptom Manage, 2018; 55:1599–1608.
41.
RahimzadehV, BartlettG, LongoC, et al.: Promoting and ethic of engagement in pediatric palliative care research. BMC Palliat Care, 2015; 16:50.
42.
Bluebond-LangnerMH: Involving children with life-shortening illnesses in decisions about participation in clinical research: A proposal for shuttle diplomacy and negotiation. In: Kodish ED (ed): Ethics and Research with Children. A Case-Based Approach. New York: Oxford University Press, 2005.
43.
CrockerJC, BeechamE, KellyP, et al.: Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias. Palliat Med, 2015; 29:231–240.
44.
EtkindSN, DavesonBA, KwokW, et al.: Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: Does it make a difference? A systematic review. J Pain Symptom Manage, 2015; 49:611–624.
45.
AntunesB, HardingR, HigginsonIJ, et al.: Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers. Palliat Med, 2014; 28:158–175.
46.
BauseweinC, SimonST, BenaliaH, et al.: Implementing patient reported outcome measures (PROMs) in palliative care—Users' cry for help. Health Qual Life Outcomes, 2011; 20:27.
47.
PintoC, BristoweK, WittJ, et al.: Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: A multi-method qualitative study. Ann Palliat Med, 2018; 7(Suppl 3):S137–S150.
48.
GrohG, BorasioGD, NickolayC, et al.: Specialized pediatric palliative home care: A prospective evaluation. J Palliat Med, 2013; 16,12:1588–1594.
49.
VollenbroichR, DurouxA, GrasserM, et al.: Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med, 2012; 15:294–300.
50.
BradfordN, YoungJ, ArmfieldNR, et al.: A pilot study of the effectiveness of home teleconsultations in paediatric palliative care. J Telemed Telecare, 2012; 18:438–442.
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