Health-related quality of life in pre-school age children with single-ventricle CHD

Heye, Kristina; Knirsch, Walter; Scheer, Ianina; Beck, Ingrid; Wetterling, Kristina; Hahn, Andreas; Hofmann, Karoline; Latal, Beatrice; Reich, Bettina; Landolt, Markus A.

doi:10.1017/s1047951118001993

Cited by 8 publications

(11 citation statements)

References 24 publications

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“…The total number of PRO items were rarely summarized in the reports. 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 ].…”

Section: Resultsmentioning

confidence: 99%

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

Holmen,

Winger,

Steindal

et al. 2023

BMC Palliat Care

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Background Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC). Methods Arksey and O’Malley’s 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published. Results Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions. Conclusion The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC. Trial registration Review registration: (https://osf.io/yfch2/) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).

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Section: Resultsmentioning

confidence: 99%

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

Holmen,

Winger,

Steindal

et al. 2023

BMC Palliat Care

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“…Several topics were discussed based on the review of 11 articles, including 5 articles discussing the relationship between quality of life in children with Congenital Heart Disease and healthy or normal children [8,10,12,13,15], 2 articles discussing quality of life in children with CHD according to patient age group [6,11], 3 articles discussing the relationship between quality of life for children with CHD and the type of CHD severity [5,9,14], and 1 article about the relationship between perceived quality of life between children with CHD and caregivers [7].…”

Section: Discussionmentioning

confidence: 99%

“…Children undergoing isolation interventions had a lower QoL than those who were not. Parents' experiences can lead them to show anxiety-related behaviors towards their children (overprotection , anxious attachment) As a result, this can affect their children's perception of QoL [6].…”

Section: Discussionmentioning

confidence: 99%

Quality of life in children with congenital heart disease (CHD): Systematic review

Ardianti¹,

Frety²,

Setyowati³

2023

World J. Adv. Res. Rev.

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Congenital Heart Disease (CHD) is the most prevalent birth defect, with an incidence of approximately 8 per 1000 births. Multiple factors that impact the patient's life and quality of life can cause Congenital Heart Disease to become a chronic condition. It is important to assess the quality of life in children with Congenital Heart Disease (CHD) in order to determine whether the child is experiencing quality of life problems and, if so, which aspects are experiencing problems, so that in addition to overcoming the disease, psychosocial impacts and social interactions with other healthy children are avoided. The purpose of this study is to determine the life quality of children with CHD. This study is a systematic review conducted by searching PubMed, Science Direct, Web of Science, and the Cochrane Library. Literature screening was carried out by looking at the predetermined inclusion and exclusion criteria so that 11 literatures were reviewed. Based on the literature study it was reported that the HRQoL scores of children with CHD were at least as good as or comparable to their healthy peers.

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“…Heush et al found a trend toward lower scores in patients with univentricular physiology or after a Mustard procedure; however, they conclude that the surgical technique does not influence on the self-reported QoL 22 . On the other hand, Heye et al compared QoL from patients with a single ventricle and those after a biventricular repair, finding a similar QoL in both groups 23 .…”

Section: Discussionmentioning

confidence: 99%

Quality of life of children and adults following cardiac surgery for congenital heart disease: A Mexican cohort

Aguilar-Alaníz¹,

Reyes-Pavón²,

Van-der-Ende³

et al. 2021

ACME

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Objective: The real burden of (congenital heart defects [CHD]) and the improvement after surgical correction or palliation is both reflected in the quality of life (QoL). There are few studies in Latin-America that evaluate QoL in the CHD population. The purpose of this study was to measure the QoL after corrective or palliative surgery for CHD. Materials and methods: An observational, cross-sectional, and comparative study was carried out at the Miguel Hidalgo Centennial Hospital. Patients from 8 to 18 years old who underwent surgery for CHD were included during a period of 8 months. A total of 40 patients were included, together with a group of 80 healthy controls. From all participants, a KIDSCREEN-52 questionnaire was taken. A comparative analysis of the results was performed. Results: Overall, patients with cardiac surgery had better QoL indexes than healthy controls (p < 0.0001). The difference was greatest in moods and emotions, autonomy, and parent relations. Conclusions: Self-perception of QoL in post-operative patients for congenital heart disease is similar and in certain dimensions higher than the healthy population, possibly due to socioeconomic differences, parental care, and styles of coping with their disease. Higher complexity studies that include psychosocial variables and parental perception are required, and a better understanding of the QoL determinants will improve the attention provided to the patient and their families.

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Health-related quality of life in pre-school age children with single-ventricle CHD

Cited by 8 publications

References 24 publications

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

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

Quality of life in children with congenital heart disease (CHD): Systematic review

Quality of life of children and adults following cardiac surgery for congenital heart disease: A Mexican cohort

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