J. Pers. Med.2015, 5(2), 174-190; doi:10.3390/jpm5020174 - published 28 May 2015 Show/Hide Abstract
Abstract: This study explored breast cancer survivors’ perspectives regarding their experiences of the survivorship continuum from diagnosis through 30 months post-treatment. The sample included women (N = 379) with newly-diagnosed breast cancer undergoing treatment at a Midwestern university-affiliated cancer center. Semi-structured interviews were conducted using the Lymphedema and Breast Cancer Questionnaire at time of diagnosis, post-operatively, quarterly during the first year, and then semi-annually thereafter through 30 months post-treatment. A mixed-methodology was used to analyze participants’ comments. Themes central to long-term survivorship experiences included social support, positive worldviews, breast cancer and lymphedema health literacy, religious/spiritual beliefs, self-empowerment, and recovery expectations. These themes were consistent with a psychoneuroimmunological model of health in which psychosocial variables mediate stress and influence health outcomes. Qualitative data showed that social support and positive worldviews were the two themes with the most significant impact on long-term breast cancer survivorship experiences. Survivors expressed a need to advance their health care literacy in order to share ownership of breast cancer and lymphedema treatment decisions. Since breast cancer is an immune-mediated disease, long-term survivorship planning should address psychosocial factors that influence the long-term psychological distress associated with immune dysfunction.
J. Pers. Med.2015, 5(2), 165-173; doi:10.3390/jpm5020165 - published 21 May 2015 Show/Hide Abstract
Abstract: Objective. This study was designed to evaluate the ability of commercial molecular tumor profiling to discover actionable mutations and to identify barriers that might prevent patient access to personalized therapies. Methods. We conducted an IRB-approved retrospective review of 26 patients with gynecologic malignancies who underwent commercial tumor profiling at our institution during the first 18 months of test availability. Tumor profiles reported targeted therapies and clinical trials matched to patient-specific mutations. Data analysis consisted of descriptive statistics. Results. Most patients who underwent tumor profiling had serous epithelial ovarian, primary peritoneal, or fallopian tube carcinoma (46%). Patients underwent profiling after undergoing a median of two systemic therapies (range 0 to 13). A median of one targeted therapy was suggested per patient profile. Tumor profiling identified no clinically actionable mutations for seven patients (27%). Six patients sought insurance approval for a targeted therapy and two were declined (33%). One patient (4%) received a targeted therapy and this was discontinued due to tumor progression. Conclusions. There are formidable barriers to targeted therapy for patients with gynecologic malignancies. These barriers include a dearth of FDA-approved targeted agents for gynecologic malignancies, lack of third party insurance coverage and limited geographic availability of clinical trials.
J. Pers. Med.2015, 5(2), 153-164; doi:10.3390/jpm5020153 - published 20 May 2015 Show/Hide Abstract
Abstract: There has been an increasing call to prospectively screen patients with breast cancer for the development of breast cancer-related lymphedema (BCRL) following their breast cancer treatment. While the components of a prospective screening program have been published, some centers struggle with how to initiate, establish, and sustain a screening program of their own. The intent of this manuscript is to share our experience and struggles in establishing a prospective surveillance program within the infrastructure of our institution. It is our hope that by sharing our history other centers can learn from our mistakes and successes to better design their own prospective screening program to best serve their patient population.
J. Pers. Med.2015, 5(2), 140-152; doi:10.3390/jpm5020140 - published 14 May 2015 Show/Hide Abstract
Abstract: Biobank development and integration with clinical data from electronic medical record (EMR) databases have enabled recent strides in genomic research and personalized medicine. BioVU, Vanderbilt’s DNA biorepository linked to de-identified clinical EMRs, has proven fruitful in its capacity to extensively appeal to numerous areas of biomedical and clinical research, supporting the discovery of genotype-phenotype interactions. Expanding on experiences in BioVU creation and development, we have recently embarked on a parallel effort to collect plasma in addition to DNA from blood specimens leftover after routine clinical testing at Vanderbilt. This initiative offers expanded utility of BioVU by combining proteomic and metabolomic approaches with genomics and/or clinical outcomes, widening the breadth for potential research and subsequent future impact on clinical care. Here, we describe the considerations and components involved in implementing a plasma biobank program from a feasibility assessment through pilot sample collection.
J. Pers. Med.2015, 5(2), 120-139; doi:10.3390/jpm5020120 - published 27 April 2015 Show/Hide Abstract
Abstract: This paper presents the findings of a research project which has involved the establishment of a maternal health phone line in Milne Bay Province of Papua New Guinea (PNG). Mobile phones and landline phones are key information and communication technologies (ICTs). This research study uses the “ICTs for healthcare development” model to ascertain benefits and barriers to the successful implementation of the Childbirth Emergency Phone. PNG has a very high maternal mortality rate. The “three stages of delay” typology was developed by Thaddeus and Maine to determine factors that might delay provision of appropriate medical treatment and hence increase risk of maternal death. The “three stages of delay” typology has been utilised in various developing countries and also in the present study. Research undertaken has involved semi-structured interviews with health workers, both in rural settings and in the labour ward in Alotau. Additional data has been gathered through focus groups with health workers, analysis of notes made during phone calls, interviews with women and community leaders, observations and field visits. One hundred percent of interviewees (n = 42) said the project helped to solve communication barriers between rural health workers and Alotau Provincial Hospital. Specific examples in which the phone line has helped to create positive health outcomes will be outlined in the paper, drawn from research interviews. The Childbirth Emergency Phone project has shown itself to play a critical role in enabling healthcare workers to address life-threatening childbirth complications. The project shows potential for rollout across PNG; potentially reducing maternal morbidity and maternal mortality rates by overcoming communication challenges.
J. Pers. Med.2015, 5(2), 107-119; doi:10.3390/jpm5020107 - published 22 April 2015 Show/Hide Abstract
Abstract: We present here the organization of the recently-constituted da Vinci European BioBank (daVEB, https://www.davincieuropeanbiobank.org/it). The biobank was created as an infrastructure to support the activities of the Fiorgen Foundation (http://www.fiorgen.net/), a nonprofit organization that promotes research in the field of pharmacogenomics and personalized medicine. The way operating procedures concerning samples and data have been developed at daVEB largely stems from the strong metabolomics connotation of Fiorgen and from the involvement of the scientific collaborators of the foundation in international/European projects aimed to tackle the standardization of pre-analytical procedures and the promotion of data standards in metabolomics.