Development of a patient-reported experience measure for chronic inflammatory skin diseases.

BACKGROUND: Patient involvement and high-quality patient-provider interactions are critical factors for quality of care in chronic inflammatory skin diseases. Also, assessing the patient's perspective contributes to optimizing care delivery and patient's experience. Until today, no user-friendly tools to measure patient experiences exist within immunodermatology. OBJECTIVES: The aim of this study was to identify the relevant items for patient's experience in immunodermatology and develop a concise questionnaire to assess patient's experience in routine clinical care. METHODS: Potential relevant items for measuring patient's perspective of immunodermatology care were identified by a literature search. From this longlist, a shortlist from patient's perspective was distilled by semi-structured interviews with a diverse patient group. This list was reduced to final items using a modified Delphi method in a multi-stakeholder focus group. For each item, one question was formulated to generate the Patient-Reported Experience Measure (PREM) questionnaire. A first internal validation was achieved by an email round. RESULTS: Forty longlist items were categorized into five domains (access to care, patient centeredness, access to information, care process and satisfaction). During interview rounds, 19 shortlist items were selected if mentioned by ≥40% of interviewees. Via the focus group, the most important items were chosen by participant consensus. For each item, a question was formulated. The final PREM covers 11 items (plus 2 in case of a first consult). The first internal validation showed that the tool is clear, understandable and has an ideal length. CONCLUSION: This short user-friendly PREM can be used in scientific and routine settings to improve care for patients who suffer from chronic inflammatory skin diseases.

What are the barriers faced by medical oncologists in initiating discussion of palliative care? A qualitative study in Flanders, Belgium.

INTRODUCTION: Before referring patients to a palliative care service, oncologists need to inform them about disease stage and discuss prognosis, treatment options and possible advantages of specialized palliative care (SPC). They often find this a complex and emotionally difficult task. As a result, they may refer their patients to SPC too late in the disease course or even not at all. This study reports findings from interviews with Belgian medical oncologists identifying the barriers they experience to introduce palliative care to their patients with advanced cancer. METHODS: The interviews were semi-structured with open-ended questions and were supported by a topic list. The transcripts were analysed during an iterative process using the grounded theory principles of open and axial coding until a final coding framework was reached. RESULTS: The study identified seven heterogeneous categories of barriers which discourage oncologists from discussing palliative care: oncologist-related barriers, patient-related barriers, family-related barriers, barriers relating to the physician referring the patient to the medical oncologist, barriers relating to disease or treatment, institutional/organizational barriers and societal/policy barriers. These categories are further refined into subcategories. DISCUSSION: These findings provide an explanation for the possible reasons why medical oncologists feel hampered in initiating palliative care and consequently discuss it rather late in the disease trajectory. The exploration and description of these barriers may serve as a starting point for revising the medical education of oncologists. They are also a reminder to hospital management and policy makers to be aware of the impact of these barriers on the daily practice of oncology.

Are future medical oncologists sufficiently trained to communicate about palliative care? The medical oncology curriculum in Flanders, Belgium.

BACKGROUND: Palliative care is considered an integral part of oncology and communicating this with patients is an unavoidable task for oncologists. This contribution investigated to what extent communication skills for communicating palliative care with patients are trained in the formal academic training program in medical oncology in Flanders, Belgium. The programme is based on the recommendations for a Global Core Curriculum in Medical Oncology, developed by The American Society of Clinical Oncology (ASCO) together with the European Society for Medical Oncology (ESMO). METHODS: For this qualitative study, data were collected using document analysis from the ESMO/ASCO recommendations and the documents of the Flanders' medical oncology programme complemented with interviews with Flemish medical oncology trainees. RESULTS: Few recommendations for training communication skills to communicate about palliative care were found in the ASMO/ASCO recommendations and even less in the Flanders' programme documents. Trainees are mainly exposed to palliative care communication during the clinical practice of their training. Only very few lectures or seminars are devoted to palliative care and even less on communication about palliative care. They reported several barriers to communicate about palliative care. CONCLUSIONS: This study revealed promising developments for the training of Flemish medical oncologists to discuss palliative care. However, there is still a need for more theoretical training on palliative care complemented with communication skills trainings. Communication training in general needs to be fully integrated as a core skill within the medical curriculum at large and should be promoted as lifelong learning and competency development.