AIMS: To describe (1) self-rated quality of life, late effects and perceived future vulnerability, (2) expectations before a follow-up appointment, subsequent satisfaction and preferences for different models of care and (3) differences between survivors in quality of life, perceived late effects, vulnerability, expectations regarding follow-up, information needs (topics they want to and did discuss) and preferences for different models of care depending on risk stratification among childhood cancer survivors. METHOD: One hundred and twelve of 141 survivors (18-45 years), diagnosed before 16 years and >5 years since diagnosis completed questionnaires before and after a follow-up appointment (or an abridged questionnaire if they did not attend an appointment within the study period). We collected data on physical (physical component score [PCS]) and mental (mental component score [MCS]) quality of life, late effects, future vulnerability and expectations about care (clinical: identification of late effects; supportive: employment, relationships). Medical information was extracted from case notes. RESULTS: MCS and PCS were comparable to population norms, but 55.5% of survivors reported > or =1 late effect (range 1-9). Clinical care was rated more highly than supportive care (p<0.001) especially in those with worse PCS (p=0.042). Supportive care was rated highly by survivors who reported more late effects (p=0.040), higher future vulnerability (p<0.001) and lower MCS (p=0.005), and by women (p=0.014). Regardless of risk stratification, consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up, p<0.001). CONCLUSION: Childhood cancer survivors are in favour of sustaining long-term follow-up care within the existing consultant-led model but this is not feasible given the increasing number of survivors. In the future we therefore need to develop alternative services which will provide the best medical care for each survivor's needs.
AIMS: To describe (1) self-rated quality of life, late effects and perceived future vulnerability, (2) expectations before a follow-up appointment, subsequent satisfaction and preferences for different models of care and (3) differences between survivors in quality of life, perceived late effects, vulnerability, expectations regarding follow-up, information needs (topics they want to and did discuss) and preferences for different models of care depending on risk stratification among childhood cancer survivors. METHOD: One hundred and twelve of 141 survivors (18-45 years), diagnosed before 16 years and >5 years since diagnosis completed questionnaires before and after a follow-up appointment (or an abridged questionnaire if they did not attend an appointment within the study period). We collected data on physical (physical component score [PCS]) and mental (mental component score [MCS]) quality of life, late effects, future vulnerability and expectations about care (clinical: identification of late effects; supportive: employment, relationships). Medical information was extracted from case notes. RESULTS:MCS and PCS were comparable to population norms, but 55.5% of survivors reported > or =1 late effect (range 1-9). Clinical care was rated more highly than supportive care (p<0.001) especially in those with worse PCS (p=0.042). Supportive care was rated highly by survivors who reported more late effects (p=0.040), higher future vulnerability (p<0.001) and lower MCS (p=0.005), and by women (p=0.014). Regardless of risk stratification, consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up, p<0.001). CONCLUSION: Childhood cancer survivors are in favour of sustaining long-term follow-up care within the existing consultant-led model but this is not feasible given the increasing number of survivors. In the future we therefore need to develop alternative services which will provide the best medical care for each survivor's needs.
Authors: Giselle K Perez; Anne C Kirchhoff; Christopher Recklitis; Kevin R Krull; Karen A Kuhlthau; Paul C Nathan; Julia Rabin; Gregory T Armstrong; Wendy Leisenring; Leslie L Robison; Elyse R Park Journal: J Cancer Surviv Date: 2018-04-15 Impact factor: 4.442
Authors: Gisela Michel; Renée L Mulder; Helena J H van der Pal; Roderick Skinner; Edit Bárdi; Morven C Brown; Janine Vetsch; Eva Frey; Rachael Windsor; Leontien C M Kremer; Gill Levitt Journal: J Cancer Surviv Date: 2019-08-08 Impact factor: 4.442
Authors: Emily Crochet; Vida L Tyc; Mingjuan Wang; Deo Kumar Srivastava; Kristi Van Sickle; Paul C Nathan; Wendy Leisenring; Todd M Gibson; Gregory T Armstrong; Kevin Krull Journal: J Cancer Surviv Date: 2019-11-05 Impact factor: 4.442
Authors: Hanne C Lie; Anneli V Mellblom; Mette Brekke; Arnstein Finset; Sophie D Fosså; Cecilie E Kiserud; Ellen Ruud; Jon H Loge Journal: Support Care Cancer Date: 2017-02-24 Impact factor: 3.603
Authors: Stefan Essig; Roderick Skinner; Nicolas X von der Weid; Claudia E Kuehni; Gisela Michel Journal: PLoS One Date: 2012-12-31 Impact factor: 3.240