Project

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Follow-up care after childhood and young adult cancer

English title Follow-up care after childhood and young adult cancer
Applicant Michel Gisela
Number 121682
Funding scheme Ambizione
Research institution Institut für Sozial- und Präventivmedizin Universität Bern
Institution of higher education University of Berne - BE
Main discipline Cancer
Start/End 01.08.2009 - 31.07.2012
Approved amount 585'970.00
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All Disciplines (3)

Discipline
Cancer
Public Health and Health Services
Psychology

Keywords (7)

Childhood cancer; young adult cancer; survivor; oncologist; haematologist; family practitioner; follow-up

Lay Summary (English)

Lead
Lay summary
Treatment for cancer in children and young adults has greatly improved and most patients are being cured. The disease and the intensive treatment, however, make them susceptible to late effects. More than 50% of survivors of childhood cancer suffer from late effects and many die from these. In addition, a substantial number of survivors suffer from psychological problems such as depression, anxiety, or post-traumatic stress. To detect and treat late effects as early as possible it is important that survivors continue to visit follow-up care long after they have been cured from the cancer. Various models of follow-up care have been described but so far none has been officially implemented in Switzerland. While follow-up care needs to be constantly updated according to the current status of research, it is also important that it is convenient for survivors to participate.
The aims of the project are: 1) to compare advantages and disadvantages of follow-up care models in Europe; 2) to determine what follow-up care is used in Switzerland; and 3) to determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, and to compare their views and opinions.
The research program consists of 3 projects. In Project 1 a questionnaire will be sent to follow-up programs in Europe. In project 2, current use of follow-up care and psychological well-being will be determined in childhood cancer survivors. We will use data from the Swiss Childhood Cancer Survivor Study for this project. For Project 3 a questionnaire will be sent to young cancer survivors to assess their opinions on currently used and desired optimal follow-up care. The sample will include childhood and young adult cancer survivors diagnosed between 1990 and 2007 aged under 25 years, who have survived for more than 5 years and who are currently aged 11 years and older. In addition oncologists/haematologists, and family practitioners will receive a questionnaire. Perspectives about the future organisation of follow-up care in Switzerland will then be compared.
Although various models for the organisation of follow-up care have been suggested, none has been systematically implemented in Switzerland. The proposed project will give an overview of follow-up care models used in Europe and describe the preferences for follow-up care models in survivors, oncologists and family practitioners in Switzerland. The project will provide the basis for the development of a standardised model of follow-up care for childhood cancer survivors in Switzerland in close collaboration with the Swiss Paediatric Oncology Group.
Direct link to Lay Summary Last update: 21.02.2013

Responsible applicant and co-applicants

Employees

Publications

Publication
Cancer's positive flip side: posttraumatic growth after childhood cancer.
(2016), Cancer's positive flip side: posttraumatic growth after childhood cancer., in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in .
Cause-Specific Long-Term Mortality in Survivors of Childhood Cancer in Switzerland: A Population Based Study.
(2016), Cause-Specific Long-Term Mortality in Survivors of Childhood Cancer in Switzerland: A Population Based Study., in International journal of cancer.
Employment Situation of Parents of Long-Term Childhood Cancer Survivors.
(2016), Employment Situation of Parents of Long-Term Childhood Cancer Survivors., in PloS one.
Follow-up care of adolescent survivors of childhood cancer: The role of health beliefs.
(2016), Follow-up care of adolescent survivors of childhood cancer: The role of health beliefs., in Pediatric blood & cancer.
Follow-up care of young childhood cancer survivors: attendance and parental involvement.
(2016), Follow-up care of young childhood cancer survivors: attendance and parental involvement., in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in .
Preferences for long-term follow-up care in childhood cancer survivors.
(2016), Preferences for long-term follow-up care in childhood cancer survivors., in European journal of cancer care.
Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors.
(2016), Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors., in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in .
Concentration, working speed and memory: cognitive problems in young childhood cancer survivors and their siblings.
(2015), Concentration, working speed and memory: cognitive problems in young childhood cancer survivors and their siblings., in Pediatric blood & cancer.
Health-related quality of life in young survivors of childhood cancer.
(2015), Health-related quality of life in young survivors of childhood cancer., in Quality of life research : an international journal of quality of life aspects of treatment, care an.
Information needs in parents of long-term childhood cancer survivors.
(2015), Information needs in parents of long-term childhood cancer survivors., in Pediatric blood & cancer.
Adolescent survivors of childhood cancer: are they vulnerable for psychological distress?
(2013), Adolescent survivors of childhood cancer: are they vulnerable for psychological distress?, in Psycho-oncology.
General practitioner involvement in follow-up of childhood cancer survivors: a systematic review.
(2013), General practitioner involvement in follow-up of childhood cancer survivors: a systematic review., in Pediatric blood & cancer.
Health-related quality of life in survivors of childhood cancer: the role of chronic health problems.
(2013), Health-related quality of life in survivors of childhood cancer: the role of chronic health problems., in Journal of cancer survivorship : research and practice.
Information provision and information needs in adult survivors of childhood cancer.
(2013), Information provision and information needs in adult survivors of childhood cancer., in Pediatric blood & cancer.
Life partnerships in childhood cancer survivors, their siblings, and the general population.
(2013), Life partnerships in childhood cancer survivors, their siblings, and the general population., in Pediatric blood & cancer.
Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study.
(2013), Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study., in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in .
Alcohol consumption and binge drinking in young adult childhood cancer survivors.
(2012), Alcohol consumption and binge drinking in young adult childhood cancer survivors., in Pediatric blood & cancer.
Clustering of health behaviours in adult survivors of childhood cancer and the general population.
(2012), Clustering of health behaviours in adult survivors of childhood cancer and the general population., in British journal of cancer.
Daily Physical Activities and Sports in Adult Survivors of Childhood Cancer and Healthy Controls: A Population-Based Questionnaire Survey
(2012), Daily Physical Activities and Sports in Adult Survivors of Childhood Cancer and Healthy Controls: A Population-Based Questionnaire Survey, in PLoS ONE.
Follow-up programs for childhood cancer survivors in europe: a questionnaire survey.
(2012), Follow-up programs for childhood cancer survivors in europe: a questionnaire survey., in PloS one.
Health-Related Quality of Life in Long-Term Survivors of Relapsed Childhood Acute Lymphoblastic Leukemia.
(2012), Health-Related Quality of Life in Long-Term Survivors of Relapsed Childhood Acute Lymphoblastic Leukemia., in PloS one.
Physical performance limitations in adolescent and adult survivors of childhood cancer and their siblings.
(2012), Physical performance limitations in adolescent and adult survivors of childhood cancer and their siblings., in PloS one.
Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study.
Rebholz Cornelia E, von der Weid Nicolas X, Michel Gisela, Niggli Felix K, Kuehni Claudia E, Swiss Pediatric Oncology Group (SPOG), Rebholz Cornelia E, von der Weid Nicolas X, Michel Gisela, Niggli Felix K, Kuehni Claudia E, Swiss Pediatric Oncology Group (SPOG), Rebholz Cornelia E, von der Weid Nicolas X, Michel Gisela, Niggli Felix K, Kuehni Claudia E, Swiss Pediatric Oncology Group (SPOG), Rebholz Cornelia E, von der Weid Nicolas X, Michel Gisela, Niggli Felix K, Kuehni Claudia E, Swiss Pediatric Oncology Group (SPOG) (2011), Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study., in European journal of cancer (Oxford, England : 1990), 47(2), 221-9.
Nachsorge nach Krebs im Kindesalter – Ein neues Feld für die Pflege?
(2011), Nachsorge nach Krebs im Kindesalter – Ein neues Feld für die Pflege?, in Onkologiepflege.
Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study.
(2010), Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study., in Journal of clinical oncology : official journal of the American Society of Clinical Oncology.
Satisfaction with follow-up consultations among younger adults treated for cancer: The role of quality of life and psychological variables
(2010), Satisfaction with follow-up consultations among younger adults treated for cancer: The role of quality of life and psychological variables, in Psycho-Oncology.
Can health beliefs help in explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study.
, Can health beliefs help in explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study., in Psycho-oncology.
Cohort profile: The Swiss Childhood Cancer Survivor Study
, Cohort profile: The Swiss Childhood Cancer Survivor Study, in International Journal of Epidemiology.
Educational achievement in Swiss childhood cancer survivors compared with the general population.
Kuehni Claudia E, Strippoli Marie-Pierre F, Rueegg Corina S, Rebholz Cornelia E, Bergstraesser Eva, Grotzer Michael, von der Weid Nicolas X, Michel Gisela, for the Swiss Pediatric Oncology Group (SPOG), Kuehni Claudia E, Strippoli Marie-Pierre F, Rueegg Corina S, Rebholz Cornelia E, Bergstraesser Eva, Grotzer Michael, von der Weid Nicolas X, Michel Gisela, for the Swiss Pediatric Oncology Group (SPOG), Kuehni Claudia E, Strippoli Marie-Pierre F, Rueegg Corina S, Rebholz Cornelia E, Bergstraesser Eva, Grotzer Michael, von der Weid Nicolas X, Michel Gisela, for the Swiss Pediatric Oncology Group (SPOG), Kuehni Claudia E, Strippoli Marie-Pierre F, Rueegg Corina S, Rebholz Cornelia E, Bergstraesser Eva, Grotzer Michael, von der Weid Nicolas X, Michel Gisela, for the Swiss Pediatric Oncology Group (SPOG), Educational achievement in Swiss childhood cancer survivors compared with the general population., in Cancer, early view, 1-1.

Collaboration

Group / person Country
Types of collaboration
PanCare Sweden (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Great North Children's Hospital, Newcastle upon Tyne Great Britain and Northern Ireland (Europe)
- Publication
University of Sheffield Great Britain and Northern Ireland (Europe)
- Publication

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
12th International Conference on Long-Term Complications Poster Long-term changes in psychological distress in childhood cancer survivors 08.06.2012 Williamsburg, Virginia, USA, United States of America Michel Gisela;
Jahresversammlung Schweizerische Gesellschaft für Pädiatrie Poster Follow-up for paediatric survivors of childhood cancer: A survey of paediatric oncology/haematology institutions across Europe 31.05.2012 Luzern, Switzerland Michel Gisela;
Swiss Paediatric Oncology Group, Annual Meeting 2012 Talk given at a conference Follow-up programs for adult survivor of childhood cancer in Europe. 27.01.2012 Lugano, Switzerland Michel Gisela;
European Symposium on Late Complications after Childhood Cancer 2011 Poster Follow-up for paediatric survivors of childhood cancer: A survey of paediatric oncology/haematology institutions across Europe 29.09.2011 Amsterdam, the Netherlands, Netherlands Michel Gisela;
14. Internationales Seminar: Onkologische Pflege - Fortgeschrittene Praxis Talk given at a conference I am a survivor! Wie geht es Menschen, die als Kinder oder Jugendlich Krebs überlebten? 25.08.2011 St. Gallen, Switzerland Michel Gisela;
13. Schweizer Onkologiepflege Kongress Talk given at a conference Nachsorge nach einer Krebserkrankung im Kindesalter: Ein neues Feld für die Pflege 24.03.2011 Bern, Switzerland Michel Gisela;
Swiss Paediatric Oncology Group Annual Meeting 2011 Talk given at a conference Follow-up care after childhood cancer in Europe 04.02.2011 Lugano, Switzerland Michel Gisela;
Swiss Public Health Conference 2010 Talk given at a conference Educational achievement in Swiss childhood cancer survivors compared to the general population 09.09.2010 Nottwil, Switzerland Michel Gisela;
11th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer Poster Association between body mass index in survivors of childhood cancer and psychological distress. 11.06.2010 Williamsburg, Virginia, USA, United States of America Michel Gisela;
Swiss Paediatric Oncology Group, Annual Meeting 2010 Talk given at a conference Can health beliefs help explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study 29.01.2010 Lugano, Switzerland Michel Gisela;
European Symposium on Late Complications after Childhood Cancer 2009 Poster Follow-up care after childhood cancer in Europe: A pilot study 29.10.2009 Edinbrugh, UK, Great Britain and Northern Ireland Michel Gisela;
Conference of the European Health Psychology Society 2009 Talk given at a conference Post-traumatic stress in young childhood cancer survivors: Associations with survivor characteristics 24.09.2009 Pisa, Italy, Italy Michel Gisela;


Communication with the public

Communication Title Media Place Year
Media relations: print media, online media Nachseorge nach Krebs im Kindesalter Mitenand Western Switzerland 2012
Media relations: print media, online media Nachsorge nach Krebs im Kindesalter – Ein neues Feld für die Pflege? Onkologiepflege, 2011, 3, 20-23 German-speaking Switzerland 2011

Associated projects

Number Title Start Funding scheme
153268 Parents of long-term childhood cancer survivors 01.08.2014 Project funding (Div. I-III)
117433 Follow-up care in childhood and young adult cancer survivors: Perspectives of survivors, oncologists and general practitioners 01.09.2007 Fellowships for advanced researchers
141722 Follow-up care after childhood and young adult cancer 01.08.2012 Ambizione

Abstract

Background: Treatment for cancer in children and young adults has greatly improved and most patients are being cured. The disease and the intensive treatment, however, make them susceptible to late effects. More than 50% of survivors of childhood cancer suffer from late effects and many die from these, particularly from secondary malignancies, and pulmonary and cardiac problems. In addition, a substantial number of survivors suffer from psychological problems such as depression, anxiety, or post-traumatic stress. To detect and treat late effects as early as possible it is important that survivors continue to visit follow-up care long after they have been cured from the cancer. Various models of follow-up care have been described but so far none has been officially implemented in Switzerland. While follow-up care needs to be constantly updated according to the current status of research, it is also important that it is convenient for survivors to participate. The Swiss Childhood Cancer Registry (SCCR) together with the Swiss Childhood Cancer Survivor Study provides an excellent platform to study current follow-up care of childhood and young adult cancer and to develop a model of follow-up care for Switzerland in collaboration with the Swiss Paediatric Oncology Group (SPOG).Aims: The aims of the project are thus: 1) to compare advantages and disadvantages of follow-up care models currently used in Europe; 2) to determine the current availability and use of follow-up care in survivors of childhood and young adult cancer in Switzerland; and 3) to determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, to compare their views and opinions, and to determine differences between survivors’ perspectives depending on demographic, disease and individual characteristics. Method: The research program consists of three projects. Project 1 will comprise a questionnaire survey of clinics and follow-up programs to assess the models of care currently used in Europe. In project 2, current use of follow-up care together with their psychological well-being will be determined in childhood cancer survivors using data from the Swiss Childhood Cancer Survivor Study (data collection for this study will be completed by end of 2008). Project 3 will be based on the results of project 2: a questionnaire survey will assess opinions and perspectives on currently used and desired optimal follow-up care. The sample will include childhood and young adult cancer survivors who were diagnosed with cancer between 1990 and 2007 and aged under 25 years, who have survived for more than 5 years and who are currently aged 11 years and older. Survivors and parents of patients who are currently aged 11-18 years will receive a separate questionnaire. In addition paediatric and adult oncologists and haematologists, and family practitioners will receive a questionnaire. The questionnaire can be completed on paper or online. Data will be double-entered and regression analyses used to determine predictors of views on follow-up (demographic, disease, treatment and individual characteristics) and to compare perspectives of survivors, oncologists/haematologists and family practitioners.Rational and significance: Although various models for the organisation of follow-up care have been suggested, none has been systematically implemented in Switzerland. The proposed project will give an overview of follow-up care models used in Europe and describe the preferences for follow-up care models in survivors, oncologists and family practitioners in Switzerland. Differences between the three groups will be determined in order to improve follow-up care in the future, adapting it to the differing preferences. The project will provide the basis for the development of a standardised model of follow-up care for childhood cancer survivors in Switzerland in close collaboration with the Swiss Paediatric Oncology Group.
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