psychological distress; illness beliefs; parents; survivor; childhood cancer; long-term outcomes
BaenzigerJulia, RoserKatharina, MaderLuzius, HarjuErika, AnsariMarc, WasepeNicolas, ScheinemannKatrin, MichelGisela (2020), Post-traumatic stress in parents of long-term childhood cancer survivors compared to parents of the Swiss general population., in Journal of Psychosocial Oncology Research and Practice
, 2(3), e024.
Christen Salome, Roser Katharina, Mulder Renée L., Ilic Anica, Lie Hanne C., Loonen Jacqueline J., Mellblom Anneli V., Kremer Leontien C. M., Hudson Melissa M., Constine Louis S., Skinner Roderick, Scheinemann Katrin, Gilleland Marchak Jordan, Michel Gisela (2020), Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group, in Journal of Cancer Survivorship
Michel Gisela, François Constanza, Harju Erika, Dehler Silvia, Roser Katharina (2019), The long-term impact of cancer: Evaluating psychological distress in adolescent and young adult cancer survivors in Switzerland, in Psycho-Oncology
, 28(3), 577-585.
Christen Salome, Mader Luzius, Baenziger Julia, Roser Katharina, Schindera Christina, Tinner Eva Maria, Michel Gisela (2019), “I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors, in Pediatric Blood & Cancer
, 66(8), e27767.
Roser Katharina, Mader Luzius, Baenziger Julia, Sommer Grit, Kuehni Claudia E., Michel Gisela (2019), Health-related quality of life in Switzerland: normative data for the SF-36v2 questionnaire, in Quality of Life Research
Christen Salome, Weishaupt Esther, Vetsch Janine, Rueegg Corina S., Mader Luzius, Dehler Silvia, Michel Gisela (2019), Perceived information provision and information needs in adolescent and young adult cancer survivors, in European Journal of Cancer Care
, 28(1), e12892-e12892.
Mader Luzius, Roser Katharina, Baenziger Julia, Vetsch Janine, Winther Jeanette Falck, Scheinemann Katrin, Michel Gisela (2019), Relationship status and quality of the partner relationship in parents of long-term childhood cancer survivors: The Swiss Childhood Cancer Survivor Study-Parents, in Psycho-Oncology
, 28(2), 309-316.
Harju Erika, Roser Katharina, Dehler Silvia, Michel Gisela (2018), Health-related quality of life in adolescent and young adult cancer survivors, in Supportive Care in Cancer
, 26(9), 3099-3110.
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
Katharina Roser, Julia Baenziger, Luzius Mader, Salome Christen, Silvia Dehler, Gisela Michel (2018), Attendance to Follow-Up Care in Survivors of Adolescent and Young Adult Cancer: Application of the Theory of Planned Behavior., in Journal of adolescent and young adult oncology
, 7(5), 584-591.
Mader Luzius, Michel Gisela, Roser Katharina (2017), Arbeitslosigkeit nach einer Krebserkrankung im Kindesalter, in Dtsch Arztebl International
, 114(47), 805-12.
Michel Gisela, Gianinazzi Micol E., Vetsch Janine, Mader Luzius, Lupatsch Judith E., von der Weid Nicolas X., Rueegg Corina S. (2017), Physicians' experience with follow-up care of childhood cancer survivors - challenges and needs, in SWISS MEDICAL WEEKLY
, 147, w14457.
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, 14419-14419.
Mader Luzius, Roser Katharina, Baenziger Julia, Tinner Eva Maria, Scheinemann Katrin, Kuehni Claudia Elisabeth, Michel Gisela, Michel Gisela (2017), Household income and risk-of-poverty of parents of long-term childhood cancer survivors., in Pediatric blood & cancer
Vetsch Janine, Rueegg Corina S., Mader Luzius, Bergstraesser 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
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.
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
, 27(4), 3127.
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.
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
, 24(8), 3425.
Background: When a child is diagnosed with cancer, parents are confronted with the potential fatality of the disease. They experience a highly stressful time, which may affect their psychological well-being, their relationship as a couple and with their children. Additionally, because of prolonged absence from work, they may experience an economic burden. However, for many parents distress is not over with the end of treatment and cure of the child. Parents may suffer from a variety of psychological problems such as depression, anxiety or post-traumatic stress symptoms. Uncertainty about the child’s health and worries about relapse or late effects may negatively affect parents individually or as a couple. So far, late outcomes of childhood cancer in parents have mostly been studied in small samples and within a short time frame after the end of treatment. Aim: For the proposed project we aim to 1) describe psychological and socio-demographic outcomes, as well as needs in parents of long-term childhood cancer survivors and compare them with parents of the general population, 2) evaluate associations of these outcomes with the clinical characteristics of the child’s disease and the child’s own late outcomes and 3) provide Swiss norm-data for three established and frequently used instruments on quality of life, psychological distress and post-traumatic stress.Method: The Swiss Childhood Cancer Registry (SCCR) registers all children diagnosed with cancer in Switzerland. We will include all parents whose children were diagnosed with cancer under age 16 years, who were Swiss residents at diagnosis, who survived for 5 years or more, and are currently alive and aged 20 years or older. Additionally, we will select a random sample of parents of the same age group. Parents of survivors will first be contacted by paediatric oncologists of the original treating clinic. All parents will receive a questionnaire package from the study centre. Clinical information on the cancer and treatment are available from the SCCR, and information about survivors’ health from the Swiss Childhood Cancer Survivor Study. Completed questionnaires will be entered into a database and analysed anonymously. For analyses, we will first use descriptive statistics to give an overview of the characteristics of participating parents and the number of parents with psychological distress or post-traumatic growth, with various socio-demographic outcomes and different needs. Second, we will compare data to scores of available norm populations and to scores of the comparison group using t-test or chi2 tests. Third, we will use linear and logistic regression analyses to evaluate associations between different outcomes and characteristics of the parents or their children. Rationale and significance: Several large cohort studies among childhood cancer survivors have improved our knowledge on their late outcomes and well-being. However, while most survivors get on with their life after cancer, many parents remain affected by their experience long after their child reached adulthood. The proposed study will be the first population-based study among parents of long-term survivors of childhood cancer and will shed light on their psychological well-being, social outcomes and the needs they have for their children and themselves.