Katja Leuteritz1, Michael Friedrich2, Erik Nowe2, Annekathrin Sender2, Sabine Taubenheim3, Yve Stoebel-Richter4, Kristina Geue2. 1. University of Leipzig, Department of Mental Health, Medical Psychology and Medical Sociology, Leipzig, Germany. Electronic address: Katja.Leuteritz@medizin.uni-leipzig.de. 2. University of Leipzig, Department of Mental Health, Medical Psychology and Medical Sociology, Leipzig, Germany. 3. Regional Clinical Cancer Registry Leipzig, University Medical Centre Leipzig, Leipzig, Germany. 4. University of Applied Sciences Zittau/Goerlitz, Faculty of Managerial and Cultural Studies, Zittau, Germany; University of Leipzig Medical Centre, Integrated Research and Treatment Centre Adiposity Diseases, Department of Medical Psychology and Medical Sociology, Department of Psychosomatic Medicine and Psychotherapy, Leipzig, Germany.
Abstract
PURPOSE: Studies among young adult cancer patients are necessary to improve their psychosocial care situation. However, achieving high response rates in this group is challenging. This study focused on the psychosocial life and supportive care situation of young adult cancer patients, and reports the recruitment and retention strategies, sample characteristics and preferences. METHOD: Participants (aged 18-39 years at diagnosis) diagnosed within the preceding 4 years were recruited from various clinical settings and surveyed at two time points. RESULTS: In total, 514 participants completed both surveys. Most patients were recruited from rehabilitation clinics (39.5%) and tumour registries (30.2%). Internet-based self-registration resulted in the highest yield of participants. Participants in inpatient (rehabilitation) treatment preferred to complete a hard copy of the questionnaire at baseline (59.7%), but a strong preference for using the online form was found at follow-up (74.5%). The distribution of diagnoses in the sample was almost comparable to the national incidence rates in Germany. Males and patients with melanoma were slightly under-represented. CONCLUSIONS: Recruitment of a large sample of young adult cancer patients is possible but requires intensive recruitment efforts, particularly in Germany. Social media and age-specific approaches were found to be effective for recruiting and retaining participants. Giving patients the option to complete a hard copy or the online version of the questionnaire, especially during inpatient treatment, may optimise participation rates. Psychosocial research and support programmes for young adults should consider that women are probably more likely to participate in psychosocial (research) programmes than men.
PURPOSE: Studies among young adult cancerpatients are necessary to improve their psychosocial care situation. However, achieving high response rates in this group is challenging. This study focused on the psychosocial life and supportive care situation of young adult cancerpatients, and reports the recruitment and retention strategies, sample characteristics and preferences. METHOD:Participants (aged 18-39 years at diagnosis) diagnosed within the preceding 4 years were recruited from various clinical settings and surveyed at two time points. RESULTS: In total, 514 participants completed both surveys. Most patients were recruited from rehabilitation clinics (39.5%) and tumour registries (30.2%). Internet-based self-registration resulted in the highest yield of participants. Participants in inpatient (rehabilitation) treatment preferred to complete a hard copy of the questionnaire at baseline (59.7%), but a strong preference for using the online form was found at follow-up (74.5%). The distribution of diagnoses in the sample was almost comparable to the national incidence rates in Germany. Males and patients with melanoma were slightly under-represented. CONCLUSIONS: Recruitment of a large sample of young adult cancerpatients is possible but requires intensive recruitment efforts, particularly in Germany. Social media and age-specific approaches were found to be effective for recruiting and retaining participants. Giving patients the option to complete a hard copy or the online version of the questionnaire, especially during inpatient treatment, may optimise participation rates. Psychosocial research and support programmes for young adults should consider that women are probably more likely to participate in psychosocial (research) programmes than men.
Authors: Carla Vlooswijk; Lonneke V van de Poll-Franse; Silvie H M Janssen; Esther Derksen; Milou J P Reuvers; Rhodé Bijlsma; Suzanne E J Kaal; Jan Martijn Kerst; Jacqueline M Tromp; Monique E M M Bos; Tom van der Hulle; Roy I Lalisang; Janine Nuver; Mathilde C M Kouwenhoven; Winette T A van der Graaf; Olga Husson Journal: Curr Oncol Date: 2022-07-29 Impact factor: 3.109
Authors: Femke Jansen; Ruud H Brakenhoff; Rob J Baatenburg de Jong; Johannes A Langendijk; C René Leemans; Robert P Takes; Chris H J Terhaard; Jan H Smit; Irma M Verdonck-de Leeuw Journal: BMC Med Res Methodol Date: 2022-01-22 Impact factor: 4.615