Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes

Abstract

Objectives Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents’ knowledge and expectations. The goal of this study was to explore parental perceptions of pRT. Methods Twenty‐eight children referred for pRT were enrolled in our prospective study. Parents were counseled regarding the indication and expected outcomes. They then completed a series of questionnaires to assess their understanding of pRT, side effects that their child experienced, and how the outcomes compared to their expectations. Results The majority of parents listed pain relief and addressing new disease as the main indication for pRT. When asked about expectations, the majority chose improvement in quality of life and prolongation of their child's life. Interestingly, 32% of parents expected pRT to cure their child's disease. Most patients undergoing pRT did not experience any adverse symptoms. The outcomes of pRT in the majority of cases exceeded parental expectations. Conclusion Improved quality of life with pRT sometimes blurs the distinction between palliation and cure. We found that most parents understand the aim to improve quality of life, although a proportion of parents perceived pRT as a cure to their child's disease. Despite this, the majority of parents reported that the outcome of the pRT course exceeded their expectations. We postulate that parents derive comfort from pursuing active treatment.

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

“…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 respond [ 46 , 72 , 79 , 84 , 88 , 89 , 96 , 105 , 111 , 122 ]. One or more PROMs used in nine studies were responsive, and new questions were presented to the respondent based on the previous answers; thus, the total number of items could be found [ 47 , 53 , 64 , 69 , 74 , 78 , 101 , 131 , 135 ].…”

“…The most frequently described PROMs were various versions of the PedsQL ( n = 47 reports/ n = 44 studies), both the generic and disease-specific versions or a combination of them [ 36 , 41 – 44 , 50 , 52 , 56 , 62 , 63 , 67 , 72 , 74 , 77 , 85 , 91 – 95 , 98 – 104 , 107 , 110 – 112 , 114 , 115 , 123 , 126 – 128 , 135 ]. Twelve reports [ 45 , 48 , 51 , 79 , 80 , 84 , 97 , 100 , 104 , 106 , 117 , 124 ] presented PROMs specifically developed to suit their specific study context.…”

“…PROMs were self-reported in 26 studies [ 35 , 48 , 49 , 53 , 55 , 64 , 65 , 67 , 69 , 70 , 73 , 75 – 77 , 86 , 88 , 105 , 107 , 109 , 120 , 121 , 129 , 131 – 134 ], by children–parent dyads in 32 studies [ 36 , 41 , 42 , 44 , 46 , 50 , 54 , 56 , 61 , 63 , 66 , 71 , 72 , 78 , 80 , 81 , 84 , 90 , 92 – 95 , 103 , 104 , 110 – 112 , 116 , 118 , 125 , 127 , 128 , 136 ], and by proxy (parent or HCP) in nineteen studies [ 45 , 47 , 51 , 58 – 60 , 68 , 79 , 83 , 85 , 97 , 98 , 102 , 106 , 114 , 115 , …”

“…Mean age was reported in 59 papers [ 35 , 41 , 44 , 46 – 50 , 52 – 57 , 62 – 69 , 71 – 73 , 75 , 76 , 78 , 80 , 81 , 83 , 84 , 88 , 89 , 91 – 96 , 98 , 103 , 104 , 107 – 109 , 111 , 119 , 120 , 123 , 125 – 132 , 134 ], ranging from 2 to 24 years, and the overall (not weighted) mean age was 12 years. The specific age of the included CAYAs was missing in 28 reports [ 36 , 42 , 43 , 61 , 70 , 77 , 79 , 85 , 86 , 90 , 100 , 102 , 105 , 110 , 112 – 116 , 118 , 121 , 122 , 133 , 135 , 136 ], but a pediatric, adolescent, or young adults’ sample was given. In the remaining reports, the CAYAs were either infants [ 45 , 59 , 60 ], previously deceased [ 51 , 82 , 97 , 106 , 117 , 124 ], o...…”

“…Most ( n = 30) of the included reports were cross-sectional studies [ 42 – 44 , 47 , 48 , 51 , 54 , 56 , 58 , 63 , 64 , 67 , 74 , 81 , 83 , 86 , 92 , 94 , 98 , 104 , 105 , 107 , 108 , 112 , 114 , 115 , 119 , 120 , 123 , 127 ] or retrospective cross-sectional studies ( n = 5) [ 82 , 97 , 106 , 117 , 124 ], followed by prospective cohorts or longitudinal studies ( n = 23) [ 36 , 49 , 52 , 53 , 57 , 68 , 69 , 73 , 79 , 80 , 84 , 85 , 91 , 95 , 102 , 121 , 122 , 126 , 128 , 131 ], pilot studies ( n = 10) [ 55 , 61 , 75 , 111 , 118 , 129 , 130 , 134 – 136 ], feasibility studies ( n = 8) [ 35 , 76 ,…”