Self-reported health-related quality of life of children and adolescent survivors of extracranial childhood malignancies: a Finnish nationwide survey

“…In the only other national population-based surveys of the HRQL of survivors of cancer in childhood, of which we are aware, small numbers of NBL survivors (n = 15 [18] and 32 [19]) and all stages of disease were included. Consequently, these reports from Finland [18] and Switzerland [19] are not comparable to the current study.…”

Section: Discussionmentioning

confidence: 99%

Health‐Related Quality of Life in Survivors of High‐Risk Neuroblastoma After Stem Cell Transplant: A National Population‐Based Perspective

Portwine

Rae

et al. 2016

Pediatric Blood & Cancer

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“…Interestingly, self-reported HRQoL or quality of life (QoL) among long-term survivors has been shown to be almost equal to or higher, than that of controls [3-5]. Survival rates have improved remarkably over recent decades, and survival probability at ten years among those diagnosed with cancer in childhood, is approximately 75% [6].…”

Section: Introductionmentioning

confidence: 99%

Psychometric properties of KIDSCREEN-27 among childhood cancer survivors and age matched peers: a Rasch analysis

Jervaeus

Kottorp

Wettergren

2013

Health Qual Life Outcomes

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BackgroundThere is a growing population of children and adolescents that have survived their cancer diagnosis. Therefore, it is of great importance to perform follow-up studies with relevant, valid and sensitive measures. It is of interest both to follow changes over time and to compare results from childhood cancer survivors with those from persons without this experience, to fully understand the impact and complexity of childhood cancer in regard to different aspects of quality of life. The aim of this study was to evaluate the psychometric properties of KIDCSREEN-27 for use with survivors of childhood cancer.MethodsKIDSCREEN-27 consists of five dimensions measuring health-related quality of life (HRQoL) in children and adolescents; 63 survivors, (4–6 years post- diagnosis) aged 12–22 and 257 from a comparison group were assessed. KIDSCREEN-27 was evaluated using a Rasch Partial Credit Model (PCM). The aspects studied were the properties of the rating scale including threshold values, internal scale validity, unidimensionality, person response validity, and differential item functioning (DIF) comparing the survivors with peers.ResultsThe rating scales revealed almost expected patterns of responses, and the threshold ordering for two of three rating scales displayed acceptable results. The items demonstrated acceptable goodness-of-fit MnSq values in 23 of 27 items (85.2%). The explained variance within each dimension was above the set criterion (50%) for all dimensions except Autonomy & Parent Relations (39.8%). Person goodness-of-fit showed acceptable results in four of five dimensions. No DIF was detected with regard to cancer experience (survivors/comparison group).ConclusionsBased on the performed Rasch analysis, KIDSCREEN-27 is recommended, with the exception of Autonomy & Parent Relations, due to non-satisfactory unidimensionality, for use among adolescents and young adults who have survived childhood cancer. Still, it is recommended that future research should include a larger sample of childhood cancer survivors in order to monitor some items more thoroughly and explore different levels and patterns of HRQoL in KIDSCREEN-27.

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“…Research results from a number of studies, including different diagnoses, show in general that the majority of persons, having survived their cancer at least four years, rate their HRQoL or QoL as similar to or higher than that of persons without a cancer experience (Bradley Eilertsen, Jozefiak, Rannestad, Indredavik, & Vik, 2012;Essig et al, 2012;Harila, Salo, Lanning, Vilkkumaa, & Harila-Saari, 2010;Langeveld, Grootenhuis, Voute, de Haan, & van den Bos, 2004;Mört, Salanterä, Matomäki, Salmi, & Lähteenmäki, 2011a, 2011bSundberg et al, 2010;J. van Dijk et al, 2007;Zebrack & Landier, 2011).…”

Section: Health-related Quality Of Lifementioning

confidence: 99%

Survivors of Childhood Cancer Report High Levels of Independence Five Years After Diagnosis

Jervaeus

Sandeberg

Johansson

et al. 2014

J Pediatr Oncol Nurs

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The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.

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Self-reported health-related quality of life of children and adolescent survivors of extracranial childhood malignancies: a Finnish nationwide survey

Cited by 14 publications

References 41 publications

Health‐Related Quality of Life in Survivors of High‐Risk Neuroblastoma After Stem Cell Transplant: A National Population‐Based Perspective

Health‐Related Quality of Life in Survivors of High‐Risk Neuroblastoma After Stem Cell Transplant: A National Population‐Based Perspective

Psychometric properties of KIDSCREEN-27 among childhood cancer survivors and age matched peers: a Rasch analysis

Survivors of Childhood Cancer Report High Levels of Independence Five Years After Diagnosis

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