Exploring Libraries’ Efforts in Inclusion and Outreach Activities Using Social Media

published_or_final_versio

Olaratumab in soft-tissue sarcomas.

Item does not contain fulltex

The patient perspective in the era of personalized medicine: What about scanxiety?

Frequency of scanning has accelerated in the era of personalized medicine and is related, but not restricted, to the exploding number of clinical trials for new cancer treatments. Particularly in drug trials, but also in clinical practice, patients are followed up by scans frequently, which may vary from every 6 to 12 weeks until progression. The authors aimed to raise awareness for this underreported but widely present "Sword of Damocles" scan-related issue also referred to as 'scanxiety.

Expected survival with and without second-line palliative chemotherapy: who wants to know?

Background According to surveys, many patients with advancedcancer wish to receive survival information.Objective This study invest igated information preferences by offer-ing patients a decision aid (DA) with infor mation on expected sur-vival for two treatment options: supportive care with or withoutsecond-line palliative chemotherapy. Predicto rs of accepting sur-vival information were explored.Design Eligible patients in this multicentre prospective study wereoffered secon d-line chemotherapy for advanced breast or colorectalcancer. A nurse presented a DA on second-line treatment andasked patients whether they desired information on (i) adverseevents, (ii) tumour response and (iii) survival. Data on 50 clinicaland psychosocial patient characteristics were collected from inclu-sion forms and patient questionnaires.Results Seventy-seven patients received a DA; median age62 years (range 32–80), 61% female, 77% colorectal cancer. Fifty-seven patients (74%; 95% CI 64–84) desired survival information.Four psychosocial characteristics (e.g . deliberative decision style)independently predicted information desire. However, the use ofthese characteristics to predict information desire hardly outper-formed a simple prediction rule.Conclusions Many patients desired information on expected sur-vival when deciding about second-line treatment. However, ourexploratory analysis indicated that patients desiring this informa-tion could not be identified based on their clinical or psychosocialcharacteristics. These findings can help encourage candid discus-sions about expected survival. Health professionals should be care-ful not to make implicit assumptions of information desire based on patient characteristics, but to explicitly ask patients if survivalinformation is desired, and act accordingly

Involving adolescents and young adults (AYA) with an uncertain or poor cancer prognosis as research partners

BackgroundThe interest in patient involvement is increasing in health research, however, is not yet well described in adolescents and young adults (AYA) with palliative cancer, such as AYAs with an uncertain and/or poor cancer prognosis (UPCP). This study aimed to document the process of involving AYAs with a UPCP as partners in research including their experiences, the impact, and our lessons learned.Materials and MethodsAYAs with a UPCP were recruited via healthcare professionals and patients to involve as research partners in the qualitative interview study. To define their role and tasks in each research phase we used the participation matrix.ResultsIn total six AYAs with a UPCP were involved as research partners and five as co-thinkers. They were involved in initiating topics, developing study design, interviewing, analyzing data, and dissemination of information. Together with the researcher, they co-produced the information letters and interview guides and implemented aftercare and extra support. The research partners ensured that the data was relevant, correctly interpreted and that results were translated to peers and clinical practice. AYAs themselves felt useful, found people who understand their challenges, and were able to create a legacy.ConclusionThe benefits of involving AYAs with a UPCP as research partners cannot be stressed enough, both for the study as well as for the AYAs themselves, but there are challenges. Researchers should anticipate and address those challenges during the planning phase of the study. This article provides practical tips on how to do so

Soft tissue sarcomas in adolescents and young adults: a comparison with their paediatric and adult counterparts.

Survival outcomes for adolescent and young adult patients with soft tissue sarcomas lag behind those of children diagnosed with histologically similar tumours. To help understand these differences in outcomes, we discuss the following issues with regard to the management of these patients with soft tissue sarcomas: delays in diagnosis, trial availability and participation, aspects of the organisation of care (with an emphasis on age-specific needs), national centralisation of sarcoma care, international consortia, and factors related to tumour biology. Improved understanding of the causes of the survival gap between adolescents and young adults with sarcomas will help drive new initiatives to improve final health outcomes in these populations. In this Review, we specifically focus on embryonal and alveolar rhabdomyosarcoma, synovial sarcoma, and adult soft tissue sarcomas diagnosed in adolescents and young adults, and discuss the age-specific needs of these patients

The effectiveness of a nurse-led intervention with the distress thermometer for patients treated with curative intent for breast cancer: design of a randomized controlled trial.

Background Distress in patients with cancer influences their quality of life. Worldwide, screening on distress with the Distress Thermometer (DT) in patients with cancer is recommended. However, the effects of the use of the DT on the psychosocial wellbeing of the patient are unknown. A study to assess the psychosocial consequences of the systematic use of the DT and its discussion by a nurse as compared to the usual care provided to outpatients who are treated for primary breast cancer is needed.Methods/design The effectiveness of a nurse-led intervention with the DT will be tested in a non-blinded randomized controlled trial. Patients treated with curative intent for breast cancer will be recruited from the Radboud University Medical Center. The intervention consists of the DT together with discussion of the results with the patient by a trained oncology nurse added to the usual care. Patients will be randomly allocated (1:1) to either receive usual care or the usual care plus the intervention. Primary outcome measure is global quality of life measured with the EORTC QLQ-C30. The functional and symptom scales of the EORTC QLQ-C30 and BR23, Hospital Anxiety and Depression Scale, Impact of Event Scale, Illness Cognition Questionnaire and DT (baseline and final measurement only) will be used to measure secondary outcomes. Questionnaires are obtained in both arms at baseline, after completion of each type of cancer treatment modality and during follow up, with a three and six months' interval during the first and second year respectively.Discussion This study will be the first randomized controlled longitudinal study about the effectiveness of the DT as nurse led-intervention. In case of proven effectiveness, future implementation and standardization of use of the DT as part of routine care will be recommended.Trial registration This study is registered at clinicaltrial.gov march 17, 2010 ( NCT01091584 )

Unraveling the heterogeneity of sarcoma survivors’ health-related quality of life regarding primary sarcoma location: Results from the Survsarc study

Simple SummarySarcomas are a rare group of heterogenous tumors that can develop anywhere in the body. Currently, studies on health-related quality of life (HRQoL) focus on sarcomas of the arm and leg or have too small sample sizes to examine the heterogeneity between different sarcoma locations, leading to limited insight into HRQoL of survivors with specific sarcoma locations. The aim of this study was to assess differences in HRQoL and examine treatment-specific HRQoL issues per sarcoma location. We found, in a population of 1099 sarcoma survivors, different patterns of HRQoL according to primary sarcoma location and a high number of additional, unique treatment-specific HRQoL issues per location, which were not captured with the general HRQoL questionnaire used in cancer patients. This indicates that the currently used HRQoL measures are too generic to capture all sarcoma-related issues, emphasizing the necessity for a comprehensive sarcoma-specific HRQoL measurement strategy.Sarcoma patients experience physical and psychological symptoms, depending on age of onset, subtype, treatment, stage, and location of the sarcoma, which can adversely affect patients' health-related quality of life (HRQoL). This study aimed to unravel the heterogeneity of sarcoma survivors' HRQoL regarding primary sarcoma location. A cross-sectional study was conducted among Dutch sarcoma survivors (N = 1099) aged &gt;= 18, diagnosed 2-10 years ago. Primary sarcoma locations were head and neck, chest, abdominal including retroperitoneal, pelvis including urogenital organs, axial skeleton, extremities (upper and lower), breast, skin and other locations. The European Organization for Research and Treatment of Cancer-Quality of Life Questionnaire (EORTC QLQ)-C30 was used to measure HRQoL accompanied by treatment-specific HRQoL questions. Sociodemographic and clinical characteristics were collected from the Netherlands Cancer Registry. Axial skeleton sarcomas had the lowest functioning levels and highest symptoms compared to other locations. Skin sarcomas had the highest functioning levels and lowest symptoms on most scales. Bone sarcomas scored worse on several HRQoL domains compared to soft tissue sarcomas. High prevalence of treatment-specific HRQoL issues were found per location. In conclusion, sarcomas can present everywhere, which is reflected by different HRQoL outcomes according to primary sarcoma location. The currently used HRQoL measure lacks treatment-specific questions and is too generic to capture all sarcoma-related issues, emphasizing the necessity for a comprehensive sarcoma-specific HRQoL measurement strategy.</p

Low-lying octupole strength in 112Cd

The low-lying octupole strength distribution in 112Cd has been measured by means of inelastic proton scattering. A splitting of the strength has been observed and interpreted as due to the interaction between the quadrupole and octupole degrees of freedom. The splitting can be reproduced by the IBA-1 model if the coupling of f- and d-bosons is considered