Quality of life after islet transplantation: data from the GRAGIL 1 and 2 trials.

BACKGROUND: Rigorous assessment of health-related quality of life (HRQL) is mandatory to establish the benefits of islet transplantation. METHODS: The 36-Item Short Form Health Survey (SF-36) and the Diabetes Quality of Life (DQOL) scales were completed by patients included in an Islet Transplantation Alone (ITA) trial (n = 10) and an Islet After Kidney (IAK) trial (n = 10). RESULTS: The two populations differed by HRQL scores at baseline, with poorer scores in ITA patients. SF-36 scores for physical limitations, bodily pain, general health perception, social functioning, and health transition improved significantly in ITA patients 6 and 12 months post transplantation. The DQOL global score was significantly improved at 6 months and remained so at 12 months, because of a significant improvement in the dimensions of satisfaction and impact of diabetes. No improvement was observed in the IAK patients. CONCLUSION: HRQL assessment may help in the selection of candidates with brittle diabetes for islet transplantation.

Building a shared patient record for breast cancer management: a French Delphi study.

Before electronic records become operational, patient-held records provide an opportunity to improve communication between patients and healthcare professionals. Our aim was to design the appropriate organization, layout and content for such a shared record for breast cancer management, based on a consensus between the various stakeholders. We therefore conducted a Delphi study within a working group of 48 members, including patients, oncologists, general practitioners, nurses and other professionals. The procedure featured three rounds during which participants' judgements were collected via mailed questionnaires and quantitative and qualitative feedback was provided on a regular basis. These three rounds were followed by an evaluation phase. Forty members (83%) participated in the three rounds. According to the agreement reached, the shared record was expected to include a front summary card, four sections for groups of users authorized to write down or insert information in the record (patient, physicians, medical auxiliaries and other healthcare professionals), and one section for medical imaging files. In addition, the record was to include specific categories of information as subsections within each of the various user sections. The participant satisfaction rate was over 90% for all aspects of the procedure, with the exception of interaction within the working group (79%).

[Patient-held health records: impact on breast cancer follow-up in the Rhône-Alpes region. Project Archimed]. / Le dossier de santé détenu par le patient : impact sur le suivi du cancer du sein dans la région Rhône-Alpes. Projet Archimed.

BACKGROUND: The conditions of use and access to medical records have become an important source of interest in the last decade. In this context, our main objective was to assess the impact of a paper patient-held records, shared with healthcare professionals. METHODS: In the particular case of breast cancer management, we identified the expectations of practitioners and patients. Secondly and according to a Delphi method, we defined the content and size of a medical record, which could be held by the patient. Following these preliminary studies, we conducted a randomized controlled trial, comparing patients with usual follow-up to others holding the new record containing essential information for coordination of care. RESULTS: The patient-held record favoured membership and satisfaction of both patients and health professionals. It was used as a communication tool between physicians and patients, but could also cause anxiety to some patients. Patient quality of life, data confidentiality and costs of care remained identical in the two arms. With its benefits for both patients and healthcare professionals, a new concept of medical records was revealed by this study. CONCLUSION: New models for healthcare organization deeply modify the roles and relationships of all the actors in the healthcare system. Further research on patient-held records is needed to evaluate the full range of its benefits and limits.

[Role of gynecologists in the care of women with breast cancer]. / La place des médecins gynécologues libéraux dans la prise en charge des femmes atteintes de cancer du sein.

OBJECTIVES: To describe the role of gynecologists in the care of women with breast cancer, their relationship with hospital specialists and with patients, and their expectations in terms of the quality of this relationship. MATERIALS AND METHODS: A descriptive cross-sectional study was performed in 2002. Two hundred and fifty gynecologists from Rhone Alpes region were randomly selected and received a questionnaire. RESULTS: Sixty-four percent of the polled practitioners answered. Forty-two percent of gynecologists had about 25-50 patients with breast cancer. Their participation in the care principally concerned the phases of diagnosis (99%) and remission (98.5%). Eight percent took part in therapeutic decision making. Ninety-two percent of the gynecologists wanted to receive systematically feedback concerning any consultation or hospitalization and 98% wanted to know the name and address details of the care coordinator. CONCLUSION: Gynecologists are willing to participate in the care of breast cancer patients. This for, they want to have more details about therapy, follow-up and the level of information given to the patients.