Marie Friedel1,2, Bénédicte Brichard3, Sabine Boonen4, Corinne Tonon4, Brigitte De Terwangne4, Dominique Bellis2,4, Murielle Mevisse4, Christine Fonteyne5, Maud Jaspard6, Marie Schruse6, Richard Harding7, Julia Downing7,8, Eve Namisango7,9, Jean-Marie Degryse1,10, Isabelle Aujoulat1. 1. Institute of Health and Society, Université catholique de Louvain, Brussels, Belgium. 2. Haute Ecole Léonard de Vinci, Brussels, Belgium. 3. Division of Pediatric Hematology/Oncology, Cliniques universitaires st Luc, Brussels, Belgium. 4. Interface pédiatrique, Cliniques universitaires st Luc, Brussels, Belgium. 5. Globul'home, Hôpital universitaire des Enfants Reine Fabiola, Brussels, Belgium. 6. Equipe liaison pédiatrique, Centre hospitalier chrétien, Clinique de l'Espérance, Liège, Belgium. 7. Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Kings College London, United Kingdom. 8. International Children's Palliative Care Network, Bristol, United Kingdom. 9. African Palliative Care Association, Kampala, Uganda. 10. Department of Public Health and Primary Care, Katholieke Universiteit Leuven, Leuven, Belgium.
Abstract
Objective: 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.
Objective: 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.
Entities:
Keywords:
Belgium; children; instrument; outcome assessment; patient-centered outcome measures; pediatric palliative care; pilot test; quality of life