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Follow-up care in childhood and young adult cancer survivors: Perspectives of survivors, oncologists and general practitioners

English title Follow-up care in childhood and young adult cancer survivors: Perspectives of survivors, oncologists and general practitioners
Applicant Michel Gisela
Number 117433
Funding scheme Fellowships for advanced researchers
Research institution Department of Psychology The University of Sheffield
Institution of higher education Institution abroad - IACH
Main discipline Psychology
Start/End 01.09.2007 - 30.04.2009
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Keywords (9)

young adult cancer survivors; childhood cancer survivors; follow-up care; perspectives on follow-up care; oncologists; general practitioners; childhood & young adult cancer; late effects

Lay Summary (English)

Lead
Lay summary
Background: Treatment for cancer has been greatly improved and many patients are being cured. The disease and the intensive treatment, however, make them susceptible to late effects. 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 and are in use at different clinics. 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.Aims: 1) To determine the advantages and disadvantages of follow-up models as perceived by survivors of childhood and young adult cancer, 2) and to determine differences between survivors' perspectives depending on demographic, disease and individual characteristics.Method: Survivors of childhood and young adult cancer aged 18 to 45 years and previously treated for lymphoma, teratoma, breast, haematological or childhood cancer with a minimum of five years from diagnosis without relapse (two years from diagnosis for the teratoma group) filled in a questionnaire. Survivors were contacted by mail and sent a questionnaire before a follow-up appointment. A second questionnaire was sent after the appointment. Survivors without appointment during the study period filled in an abridged questionnaire. We collected data on quality of life, late effects, and expectations about care (clinical: identification of late effects; supportive: employment, relationships), satisfaction with the appointment and preference for different models of follow-up care. Results: Clinical care was rated more highly than supportive care. Older survivors, those reporting more late effects and more psychological problems, and women rated clinical care highly. Survivors reporting lower quality of life, more psychological and social problems and more late effects rated supportive care as especially important during follow-up. Satisfaction with follow-up appointments was high. Clinic-based consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up).Conclusion: With the increasing number of young cancer survivors clinic-based consultant-led follow-up is no longer possible for every survivor. For certain survivors, regular follow-up at their GP will be sufficient. New forms of transition to other kinds of follow-up care and information for survivors will therefore need to be developed in the future.
Direct link to Lay Summary Last update: 21.02.2013

Responsible applicant and co-applicants

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.
Physicians’ experience with follow-up care of childhood cancer survivors – Challenges and needs
Michel Gisela, Gianinazzi Micol E., Vetsch Janine, Mader Luzius, Lupatsch Judith E., Von Der Weid Nicolas X., Rueegg Corina S., Rueegg Corina S. (2017), Physicians’ experience with follow-up care of childhood cancer survivors – Challenges and needs, in Swiss Medical Weekly, 147, w14457.
Access to specialized pediatric cancer care in Switzerland
Adam M, Von Der Weid N, Michel G, Zwahlen M, Lutz J-M, Probst-Hensch N, Niggli F, Kuehni C, Access to specialized pediatric cancer care in Switzerland, in Pediatric Blood and Cancer, 54(5), 721-727.
Age and gender differences in health-related quality of life of children and adolescents in Europe: A multilevel analysis
Michel G, Bisegger C, Fuhr DC, Abel T, Age and gender differences in health-related quality of life of children and adolescents in Europe: A multilevel analysis, in Quality of Life Research, 18(9), 1147-1157.
Benefit finding in survivors of childhood cancer and their parents: Further empirical support for the Benefit Finding Scale for Children
Michel G, Taylor N, Absolom K, Eiser C, Benefit finding in survivors of childhood cancer and their parents: Further empirical support for the Benefit Finding Scale for Children, in Child: Care, Health and Development, 36(1), 123-129.
Comparison of self-reported late effects with medical records among survivors of childhood cancer
Taylor N, Absolom K, Michel G, Urquhart T, Gerrard M, Jenkins A, Lee V, Vora A, Eiser C, Comparison of self-reported late effects with medical records among survivors of childhood cancer, in EUROPEAN JOURNAL OF CANCER, 46(6), 1069-1078.
Follow-up care after childhood cancer: Survivors' expectations and preferences for care
Michel G, Greenfield DM, Absolom K, Ross RJ, Davies H, Eiser C, Follow-up care after childhood cancer: Survivors' expectations and preferences for care, in EUROPEAN JOURNAL OF CANCER, 45(9), 1616-1623.
Follow-up care for cancer survivors: The views of clinicians
Greenfield DM, Absolom K, Eiser C, Walters SJ, Michel G, Hancock BW, Snowden JA, Coleman RE, Follow-up care for cancer survivors: The views of clinicians, in British Journal of Cancer, 101(4), 568-574.
Follow-up care for cancer survivors: Views of the younger adult
Absolom K, Eiser C, Michel G, Walters SJ, Hancock BW, Coleman RE, Snowden JA, Greenfield DM, Follow-up care for cancer survivors: Views of the younger adult, in British Journal of Cancer, 101(4), 561-567.
Satisfaction with follow-up consultations among younger adults treated for cancer: The role of quality of life and psychological variables
Michel G, Greenfield D, Absolom K, Eiser C, Satisfaction with follow-up consultations among younger adults treated for cancer: The role of quality of life and psychological variables, in Psycho-Oncology, 20(8), 813-822.

Associated projects

Number Title Start Funding scheme
141722 Follow-up care after childhood and young adult cancer 01.08.2012 Ambizione
121682 Follow-up care after childhood and young adult cancer 01.08.2009 Ambizione

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