@article{NentwichRufGirschicketal.2019,
  author    = {Nentwich, Julia and Ruf, Katharina and Girschick, Hermann and Holl-Wieden, Annette and Morbach, Henner and Hebestreit, Helge and Hofmann, Christine},
  title     = {Physical activity and health-related quality of life in chronic non-bacterial osteomyelitis},
  series = {Pediatric Rheumatology},
  volume    = {17},
  journal   = {Pediatric Rheumatology},
  doi       = {10.1186/s12969-019-0351-4},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-323710},
  year      = {2019},
  abstract  = {Background Chronic non-bacterial osteomyelitis (CNO) is an autoinflammatory disorder of the skeletal system of yet unknown etiology. Patients present with local bone pain and inflammation and - to our experience - often suffer from functional impairment with significant disabilities of daily life. The objective of this study was to assess physical activity, fitness and health-related quality of life (HRQOL) in adolescents with established diagnosis of CNO versus healthy controls (HC). Methods 15 patients with CNO and 15 age and gender matched HC aged 13-18 years, completed questionnaires, performed an incremental exercise test with gas exchange measures up to voluntary fatigue and wore an accelerometer over 7 days at home to assess physical activity behavior. Results At the time of assessment, 5 CNO patients were in clinical, one in radiological and 5 in clinical and radiological remission. 7 did not receive any therapy at the time of assessment. The results of the exercise test and of the accelerometry did not show any significant difference between CNO and HC. However, reported sports participation was lower in patients with CNO and PedsQL3.0 and 4.0 showed significant lower values in most of the scores indicating reduced HRQOL. Conclusion Although most CNO patients showed a favorable course of disease without any relevant differences in objective measurements of physical activity and fitness versus HC at the time of assessment, questionnaires revealed perceived limitations. Further studies are needed to measure HRQOL and to validate questionnaires in patients with CNO against objective measures including more participants with a higher level of disease activity.},
  language  = {en}
}
@article{HebestreitLandsAlarieetal.2018,
  author    = {Hebestreit, Helge and Lands, Larry C. and Alarie, Nancy and Schaeff, Jonathan and Karila, Chantal and Orenstein, David M. and Urquhart, Don S. and Hulzebos, Erik H. J. and Stein, Lothar and Schindler, Christian and Kriemler, Susi and Radtke, Thomas},
  title     = {Effects of a partially supervised conditioning programme in cystic fibrosis: an international multi-centre randomised controlled trial (ACTIVATE-CF): study protocol},
  series = {BMC Pulmonary Medicine},
  volume    = {18},
  journal   = {BMC Pulmonary Medicine},
  doi       = {10.1186/s12890-018-0596-6},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-227960},
  year      = {2018},
  abstract  = {Background Physical activity (PA) and exercise have become an accepted and valued component of cystic fibrosis (CF) care. Regular PA and exercise can positively impact pulmonary function, improve physical fitness, and enhance health-related quality of life (HRQoL). However, motivating people to be more active is challenging. Supervised exercise programs are expensive and labour intensive, and adherence falls off significantly once supervision ends. Unsupervised or partially supervised programs are less costly and more flexible, but compliance can be more problematic. The primary objective of this study is to evaluate the effects of a partially supervised exercise intervention along with regular motivation on forced expiratory volume in 1 s (FEV1) at 6 months in a large international group of CF patients. Secondary endpoints include patient reported HRQoL, as well as levels of anxiety and depression, and control of blood sugar. Methods/design It is planned that a total of 292 patients with CF 12 years and older with a FEV1 ≥ 35\% predicted shall be randomised. Following baseline assessments (2 visits) patients are randomised into an intervention and a control group. Thereafter, they will be seen every 3 months for assessments in their centre for one year (4 follow-up visits). Along with individual counselling to increase vigorous PA by at least 3 h per week on each clinic visit, the intervention group documents daily PA and inactivity time and receives a step counter to record their progress within a web-based diary. They also receive monthly phone calls from the study staff during the first 6 months of the study. After 6 months, they continue with the step counter and web-based programme for a further 6 months. The control group receives standard care and keeps their PA level constant during the study period. Thereafter, they receive the intervention as well. Discussion This is the first large, international multi-centre study to investigate the effects of a PA intervention in CF with motivational feedback on several health outcomes using modern technology. Should this relatively simple programme prove successful, it will be made available on a wider scale internationally. Trial registration ClinicalTrials.gov Identifier: NCT01744561; Registration date: December 6, 2012.},
  language  = {en}
}
@article{RufBadranSiauwetal.2021,
  author    = {Ruf, Katharina and Badran, Alaa and Siauw, C{\´e}line and Haubitz, Imme and Schlegel, Paul-Gerhardt and Hebestreit, Helge and H{\"a}rtel, Christoph and Wiegering, Verena},
  title     = {Does allogeneic stem cell transplantation in survivors of pediatric leukemia impact regular physical activity, pulmonary function, and exercise capacity?},
  series = {Molecular and Cellular Pediatrics},
  volume    = {8},
  journal   = {Molecular and Cellular Pediatrics},
  doi       = {10.1186/s40348-021-00127-7},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-265528},
  year      = {2021},
  abstract  = {Background Allogeneic hematopoietic stem cell transplantation (allo-HSCT) has improved survival in high-risk childhood leukemia but is associated with long-term sequelae such as impaired pulmonary function and reduced exercise capacity impacting quality of life. Methods A convenience sample of 17 patients after allo-HSCT (HSCT—12 male, age 15.7±6.7 years, time after HSCT 5.3±2.8 years) underwent pulmonary function testing, echocardiography, and an incremental exercise test on a bike. Physical activity and health-related quality of life were assessed by questionnaires (7-day physical activity recall, PEDS-QL). Seventeen healthy age- and gender-matched controls served as control group (CG) for results of pulmonary function and exercise testing. Results HSCT showed reduced pulmonary function (HSCT vs. CG: FEV1 90.5±14.0 vs. 108.0±8.7\%pred; FVC 88.4±19.3 vs. 107.6±6.9\%pred, DLCO 75.3±23.6 vs. 104.9±12.8\%pred) and exercise capacity (VO2peak 89±30.8\%pred, CG 98±17.5\%pred; Wmax 84±21.7\%pred, CG 115±22.8\%pred), but no relevant cardiac dysfunction and a good quality of life (PEDS-QL mean overall score 83.3±10.7). Differences in peak oxygen uptake between groups were mostly explained by 5 adolescent patients who underwent total body irradiation for conditioning. They showed significantly reduced diffusion capacity and reduced peak oxygen uptake. Patients reported a mean time of inactivity of 777±159min/day, moderate activity of 110±107 min/day, hard activity of 35±36 min/day, and very hard activity of 23±22 min/day. A higher amount of inactivity was associated with a lower peak oxygen uptake (correlation coefficient tau -0.48, p=0.023). Conclusions This pilot study shows that although patients after allo-HSCT reported a good quality of life, regular physical activity and exercise capacity are reduced in survivors of stem cell transplantation, especially in adolescents who are treated with total body irradiation for conditioning. Factors hindering regular physical activity need to be identified and exercise counseling should be part of follow-up visits in these patients.},
  language  = {en}
}