Objective To determine how patients with breast cancer want their doctors to communicate with them. Design Qualitative study. Setting Breast unit and patients' homes. Participants 39 women with breast cancer. Main outcome measure Patients' reports of doctors' characteristics or behaviour that they valued or deprecated. Results Patients were not primarily concerned with doctors' communication skills. Instead they emphasised doctors' enduring characteristics. Specifically, they valued doctors whom they believed were technically expert, had formed individual relationships with them, and respected them. They therefore valued forms of communication that are currently not emphasised in training and research and did not intrinsically value others that are currently thought important, including provision of information and choice. Conclusions Women with breast cancer seek to regard their doctors as attachment figures who will care for them. They seek communication that does not compromise this view and that enhances confidence that they are cared for. Testing and elaborating our analysis will help to focus communication research and teaching on what patients need rather than on what professionals think they need.
“The Third International Meeting on Genetic Disorders in the RAS/MAPK Pathway: Towards a Therapeutic Approach” was held at the Renaissance Orlando at SeaWorld Hotel (August 2–4, 2013). Seventy-one physicians and scientists attended the meeting, and parallel meetings were held by patient advocacy groups (CFC International, Costello Syndrome Family Network, NF Network and Noonan Syndrome Foundation). Parent and patient advocates opened the meeting with a panel discussion to set the stage regarding their hopes and expectations for therapeutic advances. In keeping with the theme on therapeutic development, the sessions followed a progression from description of the phenotype and definition of therapeutic endpoints, to definition of genomic changes, to identification of therapeutic targets in the RAS/MAPK pathway, to preclinical drug development and testing, to clinical trials. These proceedings will review the major points of discussion.
We report on the location, symptoms, and management of plexiform neurofibroma (PN) in children with Neurofibromatosis Type 1 (NF1) attending the 2 National Complex Neurofibromatosis 1 Services at Guy's and St. Thomas' NHS Foundation Trust, London and St Mary's Hospital, Manchester. Retrospective data collection was performed from patient chart reviews from April 2018 to April 2019. There were 127 NF1 patients with PN, age range 0.8-17.0, mean age was 9.9 years (SD ± 4.2 years). The main location of the PN was craniofacial in 35%, and limb in 19%. Disfigurement was present in 57%, pain in 28%, impairment of function in 23%,and threat to function in 9% of children. Fifty-four percent of patients were managed conservatively, 28% surgically, and 19% are either taking or due to start a mitogenactivated protein kinase kinase (MEK) inhibitor (selumetinib or trametinib), either through a clinical trial or compassionate usage scheme. This national study provides a comprehensive overview of the management of children with PN in an era where new therapies (MEK inhibitors) are becoming more widely available. We anticipate that there will be a shift to more patients receiving MEK inhibitor therapy and combination therapy (surgery and MEK inhibitor) in the future.
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