@article{GrappEllKiermeieretal.2022,
  author    = {Grapp, Miriam and Ell, Johanna and Kiermeier, Senta and Haun, Markus W. and K{\"u}bler, Andrea and Friederich, Hans-Christoph and Maatouk, Imad},
  title     = {Feasibility study of a self-guided internet-based intervention for family caregivers of patients with cancer (OAse)},
  series = {Scientific Reports},
  volume    = {12},
  journal   = {Scientific Reports},
  doi       = {10.1038/s41598-022-21157-9},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-300537},
  year      = {2022},
  abstract  = {Despite high levels of distress, family caregivers of patients with cancer rarely seek psychosocial support and Internet-based interventions (IBIs) are a promising approach to reduce some access barriers. Therefore, we developed a self-guided IBI for family caregivers of patients with cancer (OAse), which, in addition to patients' spouses, also addresses other family members (e.g., adult children, parents). This study aimed to determine the feasibility of OAse (recruitment, dropout, adherence, participant satisfaction). Secondary outcomes were caregivers' self-efficacy, emotional state, and supportive care needs. N = 41 family caregivers participated in the study (female: 65\%), mostly spouses (71\%), followed by children (20\%), parents (7\%), and friends (2\%). Recruitment (47\%), retention (68\%), and adherence rates (76\% completed at least 4 of 6 lessons) support the feasibility of OAse. Overall, the results showed a high degree of overall participant satisfaction (96\%). There were no significant pre-post differences in secondary outcome criteria, but a trend toward improvement in managing difficult interactions/emotions (p = .06) and depression/anxiety (p = .06). Although the efficacy of the intervention remains to be investigated, our results suggest that OAse can be well implemented in caregivers' daily lives and has the potential to improve family caregivers' coping strategies.},
  language  = {en}
}
@article{NeesKiermeierStrueweetal.2022,
  author    = {Nees, Juliane and Kiermeier, Senta and Struewe, Farina and Keymling, Myriam and Maatouk, Imad and Kratz, Christian P. and Schott, Sarah},
  title     = {Health behavior and cancer prevention among adults with Li-Fraumeni syndrome and relatives in Germany — a cohort description},
  series = {Current Oncology},
  volume    = {29},
  journal   = {Current Oncology},
  number    = {10},
  issn      = {1718-7729},
  doi       = {10.3390/curroncol29100614},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-290432},
  pages     = {7768 -- 7778},
  year      = {2022},
  abstract  = {Li-Fraumeni-syndrome (LFS) is a rare, highly penetrant cancer predisposition syndrome (CPS) caused by pathogenic variants (PVs) in TP53. Physical activity (PA) and a Mediterranean diet lead to cancer reduction or survival benefits and increased quality of life (QoL), but this is yet unstudied among LFS. TP53 PV carriers (PVC) and their relatives were questioned on dietary patterns (Mediterranean Diet Adherence Screener), PA (Freiburg Questionnaire), QoL (Short-form-Health-Survey-12), smoking, alcohol consumption and perception of cancer risk in a German bi-centric study from March 2020-June 2021. The study enrolled 70 PVC and 43 relatives. Women compared to men (6.49 vs. 5.38, p = 0.005) and PVC to relatives (6.59 vs. 5.51; p = 0.006) showed a healthier diet, associated with participation in surveillance (p = 0.04) and education (diet p = 0.02 smoking p = 0.0003). Women smoked less (2.91 vs. 5.91 packyears; p = 0.03), psychological well-being was higher among men (SF-12: males 48.06 vs. females 41.94; p = 0.004). PVC rated their own cancer risk statistically higher than relatives (72\% vs. 38\%, p < 0.001) however, cancer risk of the general population was rated lower (38\% vs. 70\%, p < 0.001). A relative's cancer-related death increased the estimated personal cancer risk (p = 0.01). The possibilities of reducing cancer through self-determined health behavior among PVC and relatives has not yet been exhausted. Educating families with a CPS on cancer-preventive behavior requires further investigation with regard to acceptance and real-life implementation.},
  language  = {en}
}