JMIR Publications

ABSTRACT

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.