Long‐term health‐related quality of life in young childhood cancer survivors and their parents

2021 ◽  
Author(s):  
Joanna E. Fardell ◽  
Claire E. Wakefield ◽  
Richard De Abreu Lourenco ◽  
Christina Signorelli ◽  
Maria McCarthy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors

2007 ◽  
Vol 43 (1) ◽  
pp. 122-130 ◽  
Author(s):  
R. Blaauwbroek ◽  
A.D. Stant ◽  
K.H. Groenier ◽  
W.A. Kamps ◽  
B. Meyboom ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Late Effects ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-related quality of life in European childhood cancer survivors: Protocol for a study within PanCareLIFE (Preprint)

2020 ◽  
Author(s):  
Gabriele Calaminus ◽  
Katja Baust ◽  
Claire Berger ◽  
Julianne Byrne ◽  
Harald Binder ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Cns Tumours ◽  
Fertility Problems

BACKGROUND Survival after childhood cancer has improved to more than 80% during the last years, leading to an increased number of childhood cancer survivors. Cancer itself or its treatment may cause chronic health conditions, including somatic and mental sequelae, which may impact survivors’ Health related Quality of Life (HRQoL). OBJECTIVE The project PanCareLIFE aimed to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, we aimed to describe HRQoL in survivors, investigate predictors of HRQoL and describe the association with hearing and female fertility problems. This paper describes the design of the HRQoL study, the origin of the data, strategies for data collection and sampling characteristics of survivors from each contributing country. METHODS Six institutions from five European countries (Czech Republic, France, Germany, the Netherlands, Switzerland) provided data on HRQoL assessed with the Short-Form 36 (SF-36) and on relevant predictors. Depending on the institution, data were collected either before or after the start of the PanCareLIFE project. The central PanCareLIFE data centre aggregated the data and harmonized the variables between the institutions, including a minimal data-set from non-participants. Survivors were eligible if they were diagnosed with cancer according to the 12 main groups of ICCC-3 or Langerhans Cell Histiocytosis, were aged ≤18 years at diagnosis, were resident in the respective country at the time of diagnosis, had survived ≥5 years after cancer diagnosis, were aged ≥18 years at the time of the questionnaire survey and did not refuse to registration in national/local childhood cancer cohort. RESULTS We identified 25,050 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9,871 survivors participated (response rate 39% of eligible, 51% of invited survivors). Of the participants, most were diagnosed with cancer between age 10-14 years (35%) or <5 years (32%). The median age was 8 years. Most participants were survivors of leukaemia (32%), lymphoma (21%) or Central Nervous System (CNS) tumours (14%). Ninety-three percent (93%) had no history of a subsequent tumour and 77% received chemotherapy with or without other treatments. More than half (55%) of the participants were aged 25-34 years at the time of the HRQoL study. Participating survivors differed from non-participants; participants were more often women, survivors of leukaemia or lymphoma and less frequent survivors of CNS tumours than non-participants. CONCLUSIONS PanCareLIFE has successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, in particular the impact of hearing impairment and female fertility problems on HRQoL.

The Use and Effect of the Health Storylines mHealth App on Female Childhood Cancer Survivors’ Self-efficacy, Health-Related Quality of Life and Perceived Illness

2020 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Mary Ann Cantrell ◽  
Kathy Ruble ◽  
Janell Mensinger ◽  
Susan Birkhoff ◽  
Amanda Morris ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Self Efficacy ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Perceived Illness

scholarly journals Chronic Conditions and Utility-Based Health-Related Quality of Life in Adult Childhood Cancer Survivors

2016 ◽  
Vol 108 (9) ◽  
pp. djw046 ◽  
Author(s):  
Jennifer M. Yeh ◽  
Janel Hanmer ◽  
Zachary J. Ward ◽  
Wendy M. Leisenring ◽  
Gregory T. Armstrong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Chronic Conditions ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Cognition, psychosocial functioning, and health-related quality of life among childhood cancer survivors

2020 ◽  
pp. 1-24
Author(s):  
Valerie Siegwart ◽  
Valentin Benzing ◽  
Janine Spitzhuettl ◽  
Mirko Schmidt ◽  
Michael Grotzer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Psychosocial Functioning ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Health-related quality of life of long-term childhood cancer survivors: A population-based study from the Childhood Cancer Registry of Piedmont, Italy

2007 ◽  
Vol 43 (17) ◽  
pp. 2545-2552 ◽  
Author(s):  
Daniela Alessi ◽  
Elisa Dama ◽  
Ronald Barr ◽  
Maria Luisa Mosso ◽  
Milena Maule ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Population Based ◽  
Health Related Quality ◽  
Population Based Study ◽  
Related Quality ◽  
Health Related

scholarly journals Health‐related quality of life of children born to childhood cancer survivors in Germany

2021 ◽  
Author(s):  
Magdalena Balcerek ◽  
Greta Sommerhäuser ◽  
Ralph Schilling ◽  
Heike Hölling ◽  
Stephanie Klco‐Brosius ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE

10.2196/21851 ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. e21851
Author(s):  
Gabriele Calaminus ◽  
Katja Baust ◽  
Claire Berger ◽  
Julianne Byrne ◽  
Harald Binder ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
European Countries ◽  
Cns Tumors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Background Survival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL). Objective The project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. Methods A total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. Results We identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. Conclusions PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. International Registered Report Identifier (IRRID) RR1-10.2196/21851

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