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- Bakker, Anne, et al.
(författare)
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A systematic review of health-related quality of life in children and adolescents during treatment for cancer
- 2023
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Ingår i: EJC Paediatric Oncology. - 2772-610X. ; 2
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Forskningsöversikt (refereegranskat)abstract
- Health-related quality of life (HRQL) is a multidimensional concept which captures the individual’s perception of treatment burden. Evaluating HRQL during treatment for childhood cancer provides insight into the burden of the treatment from the child’s and/or parent’s perspective.In this review, we aimed to describe Patient-Reported Outcome Measures (PROMs) used to measure HRQL during treatment, describe how HRQL of paediatric oncology patients differs from the healthy norms, and describe biopsychosocial variables that are related to HRQL during treatment.We conducted a systematic review of HRQL of childhood cancer patients on treatment, according to PRISMA guidelines. We searched PubMed, EMBASE, PsycINFO and CINAHL, and after full-text review we included 85 papers (84 studies) with 7311 participants.These studies were conducted in 30 different countries and utilised 23 different PROMs. The most commonly used PROM was Pediatric Quality of Life generic core scales. While many different PROMs were used in the included studies, none of them covered all aspects of HRQL.We identified a lack of research regarding the effects of immuno- and CAR-T therapy and coping strategies of the child and/or the parents on HRQL, as well as a knowledge gap regarding HRQL in children below 2 years of age.All studies reported lower HRQL outcomes for patients in comparison to healthy children of siblings. Overall, children on treatment compared to off treatment reported lower HRQL. Described from a biopsychosocial perspective, we found inconsistent associations between other variables and HRQL outcomes. This can be explained by different studies classifying different groups differently.To be able to compare HRQL outcomes of childhood cancer patients internationally we recommend the use of a paediatric cancer PROM core set.
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| 2. |
- Pedraza, Eddy Carolina, et al.
(författare)
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Palliative care services in paediatric oncology centres across Europe : A cross-sectional survey
- 2023
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Ingår i: EJC Paediatric Oncology. - 2772-610X. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: A total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n = 102, 64.6 %) reported offering specialised PPC (defined as 24/7 coverage services with a specialised physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n = 123, 80.9 %) and PC at home (n = 105, 69.1 %). In 38.7 % centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n = 126, 81.2 %). Few centres (n = 11, 7.1 %) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6 %) reported having bereavement services. Negative parental perception (n = 99, 64.7 %) and late referrals (n = 91, 59.5 %) were major barriers to implementation perceived by health care providers. Conclusion: Our results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for > 10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.
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