Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors.

Parents take an important role in follow-up of young cancer survivors. We aimed to investigate (1) parents' preferences for organisation of follow-up (including content, specialists involved and models of care), and (2) parents' and children's characteristics predicting preference for generalist vs. specialist-led follow-up. We sent a questionnaire to parents of childhood cancer survivors aged 11-17 years. We assessed on a 4-point Likert scale (1-4), parents' preferences for organisation of long-term follow-up. Proposed models were: telephone/questionnaire, general practitioner (GP) (both categorised as generalist for regression analysis); and paediatric oncologist, medical oncologist or multidisciplinary team (MDT) (categorised as specialists). Of 284 contacted parents, 189 responded (67%). Parents welcomed if visits included checking for cancer recurrence (mean = 3.89), late effects screening (mean = 3.79), taking patients seriously (mean = 3.86) and competent staff (mean = 3.85). The preferred specialists were paediatric oncologists (mean = 3.73). Parents valued the paediatric oncologist model of care (mean = 3.49) and the MDT model (mean = 3.14) highest. Parents of children not attending clinic-based follow-up (OR = 2.97, p = .009) and those visiting a generalist (OR = 4.23, p = .007) favoured the generalist-led model. Many parents preferred a clinic-based model of follow-up by paediatric oncologists or a MDT. However, parents also valued the follow-up care model according to which their child is followed up.

Vetsch J ，Rueegg CS ，Mader L ，Bergstraesser E ，Diezi M ，Kuehni CE ，Michel G ，Swiss Paediatric Oncology Group ... -  《-》

Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors.

Christen S ，Vetsch J ，Mader L ，Dehler S ，Korol D ，Kuehni C ，Rueegg CS ，Michel G ... -  《-》

Preferences for long-term follow-up care in childhood cancer survivors.

Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late effects. We aimed to describe preferences for different organisational aspects and models of follow-up care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16 years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4-point scales, 0-3). Clinical information was available from the SCCR. Survivors (n = 314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons (p < .001). They rated checking for cancer recurrence (mean = 2.78, SD = 0.53) and knowing about risks for my children most important (mean = 2.22, SD = 0.83). They preferred to attend a children's hospital (mean = 1.94, SD = 1.11), adult hospital (mean = 1.86, SD = 0.98) or general practitioner (mean = 1.86, SD = 1.01) rather than a central specialised late effects clinic (mean = 1.25, SD = 1.06, p < .001), and be seen by paediatric (mean = 2.24, SD = 0.72) or medical oncologist (mean = 2.17, SD = 0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors' preferences should be considered to ensure future attendance.

Michel G ，Gianinazzi ME ，Eiser C ，Bergstraesser E ，Vetsch J ，von der Weid N ，Kuehni CE ，Swiss Paediatric Oncology Group ... -  《-》

Follow-up care of young childhood cancer survivors: attendance and parental involvement.

Vetsch J ，Rueegg CS ，Mader L ，Bergstraesser E ，Rischewski J ，Kuehni CE ，Michel G ，Swiss Paediatric Oncology Group ... -  《-》

Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study.

Blaauwbroek R ，Tuinier W ，Meyboom-de Jong B ，Kamps WA ，Postma A ... -  《-》