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

Abstract

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

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

“…In order to undertake this research, we must first determine what outcomes are the most important to measure and develop appropriate tools to measure them. [104][105][106][107] Development of a core outcome set would meet this requirement. 108 This too will need to include the views of children and young people and their families, particularly if we are to address the methodological challenges that continue to affect the quality of research in this area, and the lack of evidence about whether specialist paediatric palliative care improves quality of life for children and their families.…”

The Theory of Unpleasant Symptoms in Pediatric Oncology Nursing: A Conceptual and Empirical Fit?

“…E. Lee et al, 2017). Family is a central aspect in pediatric oncology (Avoine-Blondin et al, 2018; Erker et al, 2018; Tillery, Joffe, Mara, Davies, & Pai, 2018). Pediatric oncology nursing practice is grounded in the philosophy of family-centered care, according to which the pediatric patient is cared for in the context of the family (Tillery et al, 2018; Toruner & Altay, 2018).…”

Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer

“…Children with cancer experience substantial suffering and decreased quality of life (QOL) throughout their illness trajectory (Dupuis et al, 2016;Eiser et al, 2017;McCullough et al, 2018;Rae et al, 2018;Rosenberg et al, 2016;Smith et al, 2013;Wolfe et al, 2015). Patient reported outcome measures (PROMs), including QOL assessment, offer clinicians insight into the patient's experience and symptoms and potentially improve communication between the patient and provider (Avoine-Blondin et al, 2018;Howell et al, 2015). The child self-report of QOL has been found to be reliable and valid and give children older than 5 years a voice through the use of age-appropriate measures (Varni et al, 2005(Varni et al, , 2007.…”