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 141722
Funding scheme Ambizione
Research institution Seminar für Gesundheitswissenschaften und Gesundheitspolitik Universität Luzern
Institution of higher education University of Lucerne - LU
Main discipline Cancer
Start/End 01.08.2012 - 31.08.2014
Approved amount 174'253.00
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All Disciplines (3)

Discipline
Cancer
Psychology
Public Health and Health Services

Keywords (6)

Follow-up care; Preferences of care; Psychological distress; Adolescent / young adult cancer; Oncologists / haematologists; Childhood cancer

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 determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, 2) to compare their views and opinions, 3) to determine differences between survivors’ perspectives depending on demographic, disease and individual characteristics, 4) to determine difference in follow-up attendance depending on survivors’ previous experience of follow-up and transition of care, and 5) to describe changes in psychological distress in survivors.

We will send questionnaires 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 18 years and older. Parents of survivors who are currently aged 11-18 years will receive a separate similar questionnaire.Oncologists/haematologists, and family practitioners have already completed a questionnaire in 2011. Perspectives about the future organisation of follow-up care in Switzerland will then be compared. In addition, we will extract information from medical records on follow-up care that survivors received after treatment ended until late adolescence and on the transition survivors experienced.

Although various models for the organisation of follow-up care have been suggested, none has been systematically implemented 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
Can the Theory of Planned Behavior help explain attendance to follow-up care of childhood cancer survivors?
Baenziger Julia, Roser Katharina, Mader Luzius, Christen Salome, Kuehni Claudia E., Gumy-Pause Fabienne, Tinner Eva Maria, Michel Gisela (2018), Can the Theory of Planned Behavior help explain attendance to follow-up care of childhood cancer survivors?, in Psycho-Oncology.
Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls.
Mader Luzius, Vetsch Janine, Christen Salome, Baenziger Julia, Roser Katharina, Dehler Silvia, Michel Gisela (2017), Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls., in Swiss Medical Weekly, 147, e14419.
Household income and risk-of-poverty of parents of long-term childhood cancer survivors.
Mader Luzius, Roser Katharina, Baenziger Julia, Tinner Eva-Maria, Scheinemann Katrin, Kuehni Claudia E., Michel Gisela (2017), Household income and risk-of-poverty of parents of long-term childhood cancer survivors., in Pediatric Blood & Cancer, e26456.
Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors.
Vetsch Janine, Rueegg Corina S., Mader Luzius, Berstraesser Eva, Diezi Manuel, Kuehni Claudia E., Michel Gisela (2017), Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors., in European Journal of Cancer Care, e12649.
Income in Adult Survivors of Childhood Cancer.
Wengenroth Laura, Sommer Grit, Schindler Matthias, Spycher Ben, von der Weid Nicolas X., Stutz-Grunder G, Michel Gisela, Kuehni Claudia E. (2016), Income in Adult Survivors of Childhood Cancer., in PlosOne, 11(2), e0155546.
Cancer's positive flip side: posttraumatic growth after childhood cancer.
Gianinazzi Micòl E, Rueegg Corina S, Vetsch Janine, Lüer Sonja, Kuehni Claudia E, Michel Gisela, Swiss Pediatric Oncology Group (SPOG) (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 , 24(1), 195-203.
Cause-Specific Long-Term Mortality in Survivors of Childhood Cancer in Switzerland: A Population Based Study.
Schindler Matthias, Spycher Ben D, Ammann Roland A, Ansari Marc, Michel Gisela, Kuehni Claudia E, Kuehni Claudia E, Kuehni Claudia E (2016), Cause-Specific Long-Term Mortality in Survivors of Childhood Cancer in Switzerland: A Population Based Study., in International journal of cancer, 1.
Employment Situation of Parents of Long-Term Childhood Cancer Survivors.
Mader Luzius, Rueegg Corina S, Vetsch Janine, Rischewski Johannes, Ansari Marc, Kuehni Claudia E, Michel Gisela, Michel Gisela (2016), Employment Situation of Parents of Long-Term Childhood Cancer Survivors., in PloS one, 11(3), 0151966-0151966.
Follow-up care of adolescent survivors of childhood cancer: The role of health beliefs
Lupatsch Judith E., Wengenroth Laura, Rueegg Corina S., Teuffel Oliver, Gumy-Pause Fabienne, Kuehni Claudia E., Michel Gisela (2016), Follow-up care of adolescent survivors of childhood cancer: The role of health beliefs, in Pediatric Blood and Cancer, 63(2), 318.
Follow-up care of young childhood cancer survivors: attendance and parental involvement.
Vetsch Janine, Rueegg Corina S, Mader Luzius, Bergstraesser Eva, Rischewski Johannes, Kuehni Claudia E, Michel Gisela, Michel Gisela (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 , 1.
Preferences for long-term follow-up care in childhood cancer survivors.
Michel G, Gianinazzi M E, Eiser C, Bergstraesser E, Vetsch J, von der Weid N, Kuehni C E, Kuehni C E (2016), Preferences for long-term follow-up care in childhood cancer survivors., in European journal of cancer care, 25(6), 1024-1033.
Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors.
Christen Salome, Vetsch Janine, Mader Luzius, Dehler Silvia, Korol Dimitri, Kuehni Claudia, Rueegg Corina S, Michel Gisela (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 , 1.
Concentration, working speed and memory: Cognitive problems in young childhood cancer survivors and their siblings.
Wengenroth L, Rueegg C S, Michel G, Gianinazzi M E, Essig S, von der Weid N X, Grotzer M, Kuehni Claudia E, for the Swiss Paediatric Oncology Group SPOG (2015), Concentration, working speed and memory: Cognitive problems in young childhood cancer survivors and their siblings., in Pediatric blood & cancer, 10.1002/pb.
Health-related quality of life in young survivors of childhood cancer.
Wengenroth L, Gianinazzi M E, Rueegg C S, Lüer S, Bergstraesser E, Kuehni C E, Michel G (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, 10.1007/s1.
Information needs in parents of long-term childhood cancer survivors.
Vetsch Janine, Rueegg Corina S, Gianinazzi Micòl E, Bergsträsser Eva, von der Weid Nicolas X, Michel Gisela, for the Swiss Paediatric Oncology Group (SPOG) (2015), Information needs in parents of long-term childhood cancer survivors., in Pediatric blood & cancer, 10.1002/pb.
Intra-Rater and Inter-Rater Reliability of a Medical Record Abstraction Study on Transition of Care after Childhood Cancer.
Gianinazzi Micòl E, Rueegg Corina S, Zimmerman Karin, Kuehni Claudia E, Michel Gisela, Swiss Paediatric Oncology Group (SPOG) (2015), Intra-Rater and Inter-Rater Reliability of a Medical Record Abstraction Study on Transition of Care after Childhood Cancer., in PloS one, 10(5), 0124290-0124290.
The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors.
Brown Morven C, Levitt Gillian A, Frey Eva, Bárdi Edit, Haupt Riccardo, Hjorth Lars, Kremer Leontien, Kuehni Claudia E, Lettner Christina, Mulder Renée L, Michel Gisela, Skinner Roderick, on behalf of the PanCareSurFup Consortium (2015), The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors., in Pediatric blood & cancer, 2(2), 322-328.
Information provision and information needs in adult survivors of childhood cancer.
Gianinazzi Micòl E, Essig Stefan, Rueegg Corina S, von der Weid Nicolas X, Brazzola Pierluigi, Kuehni Claudia E, Michel Gisela, for the Swiss Paediatric Oncology Group (SPOG) (2014), Information provision and information needs in adult survivors of childhood cancer., in Pediatric blood & cancer, 0.
Krebs bei Kindern. Ein Überblick aus dem Schweizer Kinderkrebsregister
Mitter V, Michel G (2014), Krebs bei Kindern. Ein Überblick aus dem Schweizer Kinderkrebsregister, in Onkologiepflege., (1), 5-8.
Life partnerships in childhood cancer survivors, their siblings, and the general population.
Wengenroth L, Rueegg C S, Michel G, Essig S, Ammann R A, Bergstraesser E, Kuehni C E, for the Swiss Paediatric Oncology Group (SPOG) (2014), Life partnerships in childhood cancer survivors, their siblings, and the general population., in Pediatric blood & cancer, 0.
Mental Healthcare Utilization in Survivors of Childhood Cancer and Siblings: the Swiss Childhood Cancer Survivor Study
Gianinazzi Micol E, Rueegg Corina S, von der Weid Nicolas X, Niggli Felix, Kuehni Claudia E, Michel Gisela (2014), Mental Healthcare Utilization in Survivors of Childhood Cancer and Siblings: the Swiss Childhood Cancer Survivor Study, in Journal of Supportive Care in Cancer, 0.
Adolescent survivors of childhood cancer: Are they vulnerable for psychological distress?
Gianinazzi ME, Rueegg CS, Wengenroth L, Bergstraesser E, Rischewski J, Ammann RA, Kuehni CE, Michel G (2013), Adolescent survivors of childhood cancer: Are they vulnerable for psychological distress?, in Psycho-Oncology, 22(9), 2051-2058.
Do childhood cancer survivors with physical performance limitations reach healthy activity levels?
Rueegg Corina S, Gianinazzi Micòl E, Michel Gisela, von der Weid Nicolas X, Bergstraesser Eva, Kuehni Claudia E, for the Swiss Paediatric Oncology Group (SPOG) (2013), Do childhood cancer survivors with physical performance limitations reach healthy activity levels?, in Pediatric blood & cancer, 60(10), 1714-1720.
General practitioner involvement in follow-up of childhood cancer survivors: A systematic review
Singer Sarah, Gianinazzi Micòl E., Hohn Anna, Kuehni Claudia E., Michel Gisela (2013), General practitioner involvement in follow-up of childhood cancer survivors: A systematic review, in Pediatr Blood Cancer, 60(10), 1565-1573.
Health-related quality of life in survivors of childhood cancer: the role of chronic health problems.
Rueegg Corina S, Gianinazzi Micol E, Rischewski Johannes, Beck Popovic Maja, von der Weid Nicolas X, Michel Gisela, Kuehni Claudia E (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, 1.
Psychosoziale Spätfolgen nach Kinderkrebs - Eine Langzeitstudie des Schweizer Kinderkrebsregisters
Rueegg Corina S., Gianinazzi Micol E, Michel Gisela (2013), Psychosoziale Spätfolgen nach Kinderkrebs - Eine Langzeitstudie des Schweizer Kinderkrebsregisters, in Schweizer Krebsbulletin, (3), 2017.
Clustering of health behaviours in adult survivors of childhood cancer and the general population.
Rebholz C E, Rueegg C S, Michel G, Ammann R A, von der Weid N X, Kuehni C E, Spycher B D, Swiss Paediatric Oncology Group (SPOG) (2012), Clustering of health behaviours in adult survivors of childhood cancer and the general population., in British journal of cancer, 107(2), 234-42.
Follow-up programs for childhood cancer survivors in europe: a questionnaire survey.
Essig Stefan, Skinner Roderick, von der Weid Nicolas X, Kuehni Claudia E, Michel Gisela (2012), Follow-up programs for childhood cancer survivors in europe: a questionnaire survey., in PloS one, 7(12), 53201-53201.
Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia.
Essig Stefan, von der Weid Nicolas X, Strippoli Marie-Pierre F, Rebholz Cornelia E, Michel Gisela, Rueegg Corina S, Niggli Felix K, Kuehni Claudia E, Swiss Pediatric Oncology Group (SPOG) (2012), Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia., in PloS one, 7(5), 38015-38015.
Nachsorge nach Krebs im Kindesalter
Michel Gisela, Michel Gisela, Wengenroth Laura, von der Weid Nicolas X, Bergstraesser Eva, Kuehni Claudia E, Swiss Paediatric Oncology Group (SPOG) (2012), Nachsorge nach Krebs im Kindesalter, in Schweizer Krebsbulletin, (3), 212-213.
Physical Performance Limitations in Adolescent and Adult Survivors of Childhood Cancer and Their Siblings
Rueegg CS, Michel G, Wengenroth L, von der Weid NX, Bergstraesser E, Kuehni CE (2012), Physical Performance Limitations in Adolescent and Adult Survivors of Childhood Cancer and Their Siblings, in PLOS ONE, 7(10), e47944.
Nachsorge nach Krebs im Kindesalter - Pläne für die Schweiz
Michel G, von der Weid NX, Nachsorge nach Krebs im Kindesalter - Pläne für die Schweiz, in Schweizer Krebsbulletin, (4), 296-298.
The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors
Brown MC, Levitt GA, Frey E, Bardi E, Haupt R, Hjorth L, Kremer LC, Kuehni C, Lettner C, Mulder RL, Michel G, Skinner R, on behalf of PanCareSurFup, The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors, in Pediatric Blood & Cancer.

Collaboration

Group / person Country
Types of collaboration
Late Effects Group Sheffield, UK, Prof. Dr. C. Eiser, Diana Greenfield PhD Great Britain and Northern Ireland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
PanCare SurFup (PCSF) Sweden (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Swiss Paediatric Oncology Group (SPOG), Prof. Dr. N. von der Weid Switzerland (Europe)
- Publication
- Research Infrastructure
Swiss Childhood Cancer Registry (SCCR), PD Dr. C. Kuehni, Prof. Dr. M. Egger, M. Zwahen PhD Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
European Symposium on Late Complications after Childhood Cancer (ESLCCC) Poster Preferences for the organization of long-term follow-up in childhood cancer survivors 15.09.2014 Edinburgh, Great Britain and Northern Ireland Michel Gisela; Rueegg Corina;
Swiss Society of Paediatrics, Swiss Society of Paediatric Surgery, Swiss Society for Child and Adolescent Psychiatry and Psychotherapy Poster Preferences for the organization of long-term follow-up in childhood cancer survivors 12.06.2014 BAsel, Switzerland Michel Gisela; Rueegg Corina;
Congress of Psycho-oncology (IPOS) Talk given at a conference Posttraumatic Growth in Parents of Childhood Cancer Survivors 04.11.2013 Rotterdam, Netherlands Michel Gisela;
Conference of the European Health Psychology Society Talk given at a conference Long-term Changes in Psychological Distress in Childhood Cancer Survivors 16.07.2013 Bordeaux, France, France Michel Gisela;
Fachtagung Psychoonkologie Talk given at a conference Long-term Changes in Psychological Distress in Childhood Cancer Survivors 06.06.2013 St. Gallen, Switzerland Michel Gisela;
SIOP conference, and Paediatric Psychooncology Preconference Talk given at a conference INFORMATION NEEDS IN CHILDHOOD CANCER SURVIVORS: WHAT THEY GOT AND WHAT THEY WANT 05.10.2012 London, Great Britain and Northern Ireland Michel Gisela;
SwissFamilyDocs Conference Poster Die Rolle des Grundversorgers in der Nachsorge von Kinderkrebsüberlebenden 30.08.2012 Lausanne, Switzerland Michel Gisela;


Self-organised

Title Date Place
14th Meeting of the PanCare Society 08.10.2014 Lucerne, Switzerland

Knowledge transfer events



Self-organised

Title Date Place
Erste Schweizer Kinderkrebssurvivortagung 17.11.2013 Bern, Switzerland

Communication with the public

Communication Title Media Place Year
Talks/events/exhibitions Survivormeeting German-speaking Switzerland 2015
Media relations: radio, television Erwachsene, die als Kind Krebs überlebt haben SRF1 German-speaking Switzerland 2014
Media relations: radio, television Krebs bei Kindern Tele 1 (Fokus) German-speaking Switzerland 2014

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
121682 Follow-up care after childhood and young adult cancer 01.08.2009 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 secondary malignancies, pulmonary and cardiac problems. In addition, a substantial number of survivors suffer from psychological problems such as depression, anxiety, or post-traumatic stress. Until now it remains unclear if psychological problems are transient or constitute a longer-lasting problem for many survivors. Also, for survivors of adolescent and young adult (AYA) cancer there is still a lack of research in this area. To detect and treat late effects as early and effective as possible it is important that survivors continue to visit follow-up care until long after they have been cured from cancer. Various models of follow-up care have been described but so far none has been officially implemented in Switzerland. Organisation and content of follow-up care needs to follow medical guidelines, which are regularly updated. However, it is also important that follow-up is convenient for survivors to participate. Aims: The original Ambizione project evaluated 1) availability of follow-up care programmes in Europe, and 2) psychological well-being and use of follow-up care in childhood cancer survivors. The extension will focus on 3) the opinions and desires for follow-up care in childhood and AYA cancer survivors, and medical professionals using questionnaire surveys. The aims are i) to determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, ii) to compare their views and opinions, iii) to determine differences between survivors’ perspectives depending on demographic, disease and individual characteristics, iv) to determine difference in follow-up attendance depending on survivors’ previous experience of follow-up and transition of care, and v) to describe changes in psychological distress in survivors.Method: Using 3 questionnaire surveys we want to assess opinions and perspectives on currently used and desired follow-up care. The sample includes survivors of childhood and AYA cancer diagnosed with cancer between 1990 and 2005 at age 0-25 years, who have survived for =5 years and are currently aged 18 years and older. Questionnaires for survivors include extensive questions on current follow-up, and opinions and desires for an ideal follow-up. Additionally, the same measure of psychological distress is included, which has previously been completed by survivors for the Swiss Childhood Cancer Survivors Study. Parents of survivors who are currently aged 11-18 years will receive a separate similar questionnaire. Paediatric and adult oncologists/haematologists, and family practitioners/paediatricians have completed a questionnaire in 2011. The extension will collect additional data on experienced follow-up care of childhood cancer survivors early after treatment until late adolescence. This information will be abstracted from medical records in the former treating clinic of childhood cancer survivors.Rational and significance: Currently, there is no systematically implemented system to follow-up young cancer survivors in Switzerland. The proposed project will describe the preferences for follow-up care in survivors, oncologists and family practitioners in Switzerland. Differences between the three groups will be determined in order to improve future follow-up. The project will allow collecting detailed information on received and desired follow-up not only of survivors of childhood cancer but also for survivors of AYA cancer. Because they often fall between paediatric and adult care they may not receive the most adequate follow-up.Adolescence might be a particularly vulnerable time such that follow-up and transition to adult care experienced during this time will have a long term influence on what follow-up is attended and desired in adulthood. We will now be able to include objectively assessed and detailed information from medical records on follow-up experienced early after treatment until adolescence. The project will provide the basis for the development of a standardised model of follow-up care for childhood and AYA cancer survivors in Switzerland in close collaboration with the Swiss Paediatric Oncology Group.
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