Health-related quality of life, culture and communication: a comparative study in children with cancer in Argentina and Sweden

Abstract

BackgroundMalignant disorders in childhood are life-threatening conditions, and issues regarding the children’s health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study was to explore HRQOL in children with cancer in two countries, Argentina and Sweden, which have different cultural contexts. The specific aims were: to determine HRQOL by gender, age, diagnosis, treatment modality, time since diagnosis, and parental education/employment across cultures. Further aims were to assess the child/parent relationship in HRQOL and the influence of demographic variables in psychosocial and physical HRQOL in each country.MethodsA cross-sectional study was performed in 2014, including 58 children (24 females, 34 males) and 62 parents/guardians. The instrument, the Pediatric Quality of Life Inventory™ (PedsQL™, generic, cancer and fatigue modules), and medical records were used. The response rate was 97%.ResultsThe mean age of the children was 8.67 years (SD 5.1, range 2–18 years) and the mean time on treatment was 10.7 months (SD 8.7, range 1–30 months). The most common diagnosis was leukaemia (57%). In Argentina, in comparison with Sweden, a higher estimation of generic HRQOL was reported among adolescents (p = 0.022) and more cancer-related problems among school-age children (p < 0.0001). Children and parents in both countries confirmed the major problem with fatigue and multimodality therapy regimes, but lower levels of fatigue were reported in Argentina. Adolescents and children with solid tumours appeared as vulnerable groups. In Sweden, children whose mothers had post-secondary education reported less cancer-related problems (p = 0.031). Good relationships were found between child/parent reports in Argentina regarding the fatigue module (p = 0.034) and physical subscale (p = 0.014), and in Sweden regarding generic health (p = 0.004), including psychosocial (p = 0.006) and physical subscales (p = 0.042), and cancer (p = 0.001), and fatigue (p < 0.0001) modules. In Sweden, psychosocial health (OR 7.5; p = 0.007) and physical health (OR 6.2; p = 0.011) were positively influenced by being a school-age child.ConclusionsFatigue is as a major problem across cultures. Still, being in school facilitates recovery. Good relationships in psychosocial HRQOL highlight professional challenges regarding severe issues and open communication, and the need of performing comparative studies of HRQOL of children with cancer from different cultural backgrounds.

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review

“…In the reports ( n = 47) providing items per PROM, there were a range from 3 to 390 items (median 34 items) [ 35 , 41 , 42 , 44 , 50 – 52 , 54 , 56 , 57 , 62 , 63 , 66 , 68 , 71 , 73 , 80 – 82 , 85 – 87 , 90 – 92 , 94 , 95 , 97 , 98 , 100 , 102 , 103 , 107 , 110 , 112 , 114 – 119 , 124 , 126 – 128 , 134 , 136 ]. In 30 reports, the number of items was missing for one or more of the identified PROMs, and a total number was not possible to calculate [ 36 , 43 , 45 , 48 , 49 , 55 , 58 – 61 , 65 , 67 , 70 , 75 – 77 , 83 , 93 , 99 , 104 , 106 , 108 , 109 , 120 , 122 , 123 , 125 , 130 , 132 , 133 ]. In ten studies, the number of items varied by age group or who chose to re...…”

“…In one study, both children, parents, and nurses answered the PROMs [ 130 ]. In the remaining studies, the respondents varied depending on the setting and the child’s condition [ 43 , 57 , 62 , 74 , 87 , 89 , 91 , 96 , 100 , 101 , 108 , 123 , 135 ].…”

“…The median number of included CAYAs was n = 75. Among the 57 papers providing details of a parent sample [ 12 , 36 , 41 , 42 , 44 – 47 , 50 – 54 , 58 , 60 – 63 , 72 , 74 , 76 , 78 – 80 , 82 , 84 – 86 , 89 , 93 – 100 , 102 , 103 , 106 , 108 , 110 – 112 , 114 – 118 , 124 , 125 , 127 , 128 , 130 , 133 , 134 ], a total of 8,659 parents were included, with a median of 68 (min–max 10–1138) parents included in these samples. In 15 reports, HCPs were involved in answering the PROMs [ 59 – 61 , 70 , 90 , 106 , 111 , 113 , 121 , 122 , 124 , 130 , 132 , 135 , 136 ], but only five of these gave the number of HCPs (total of n = 404) included [ 59 , 61 , 90 , 113 , 132 ].…”

“…CAYAs with cancer were included in 48 reports [ 35 , 36 , 41 , 43 , 48 , 53 , 57 , 64 , 69 , 70 , 73 – 80 , 84 , 85 , 87 – 89 , 95 – 99 , 101 – 104 , 108 , 109 , 113 – 118 , 121 , 122 , 125 , 130 , 131 , 134 – 136 ], and patients with various types of organ failure such as kidney, liver, or heart failure were included in 22 reports [ 42 , 44 , 49 , 50 , 52 , 54 – 56 , 62 , 63 , 67 , 68 , 91 – 94 , 105 , 107 , 110 , 112 , 119 , 120 ]. Three reports included patients with progressive neurological conditions [ 65 , 71 , 128 ], while 23 reports included patients with various LL/LT conditions in combination [ 45 , 47 , 51 , 58 – 61 , 66 , 72 , 81 , 82 , 86 , 90 , 100 ,…”

Association between multiple symptoms and quality of life of paediatric patients with cancer in Brazil: a cross-sectional study

“…Moreover, parents and professionals often do not report the problem, and consequently, the symptoms are not treated. 28 Thus, understanding the characteristics, frequency, severity and how these symptoms affect the QoL of these patients may help in the development of strategies for the assessment, response and management during chemotherapy. 25 29 Indeed, evaluation of QoL and specific measurement of symptoms have become essential in health services because they provide unique information that can assist in directing clinical interventions.…”