ABSTRACT
OBJECTIVE: Patients with a rare cancer (RC) often have a more complex disease trajectory than patients with a common cancer. Research involving both patient groups is needed to identify differences and resemblances. In this study, we aimed to explore and compare experiences, needs and quality of life of patients with rare and common cancer throughout the disease trajectory. METHODS: A qualitative focus group study was conducted, including patients with rare and common cancer (n = 25). Participants were purposively selected to reflect heterogeneity of cancer types. A semi-structured topic list was used. Focus groups (n = 4) were recorded, transcribed verbatim and analysed, using thematic analysis. RESULTS: Three themes were identified emphasizing care inequality between patients with rare and common cancer: (1) The solitary experience: lack of information and support impact the RC patient, (2) Sudden impact, but recognition reduces the common cancer burden, and (3) Absence of psychosocial care requires being empowered as a cancer patient. CONCLUSIONS: Patients with RC are faced with enormous challenges due to the high impact of their solitary experience on their quality of life, while patients with common cancer generally experience social support and recognition alleviating their burden. Centralisation of care for patients with RC is needed and tailored psychosocial care should be provided to overcome inequalities.
Subject(s)
Neoplasms , Quality of Life , Humans , Quality of Life/psychology , Qualitative Research , Focus Groups , Social SupportABSTRACT
INTRODUCTION: The aim of this study is to develop a new tool to assess professional behaviour in general practitioner (GP) trainees: the evaluation of professional behaviour in general practice (EPRO-GP) instrument. METHODS: Our study consisted of 4 phases: (1) development of a model of professionalism in general practice based on a literature review on professionalism, competency models of general practice and the overall educational objectives of postgraduate training for general practice; (2) development of the EPRO-GP instrument in collaboration with a sounding board; (3) establishing the content validity of the EPRO-GP instrument using a nominal group technique; and (4) establishing the feasibility of the EPRO-GP instrument in 12 general practice trainees and their general practice trainers. RESULTS: The model of professionalism in general practice encompassed 4 themes within professionalism: (a) professionalism towards the patient; (b) professionalism towards other professionals; (c) professionalism towards the public; and (d) professionalism towards oneself. These 4 themes covered 26 elements of professionalism. This model provided the framework of the EPRO-GP instrument, which we developed further by operationalising the 26 elements in 127 behavioural items. The expert ratings confirmed the content validity of the instrument with one exception: the element "altruism" was removed as a stand-alone category but it remained throughout the tool in items giving primacy to patient welfare. The results on the feasibility of the EPRO-GP instrument were very encouraging. All tutorials yielded professional behaviour learning points. DISCUSSION: Our results support the content validity of the EPRO-GP instrument as well as its feasibility as a tool to educate for professionalism in general practice.
Subject(s)
Clinical Competence/standards , Education, Medical, Graduate/methods , Family Practice/education , Professional Practice/standards , Professional Role , Feasibility Studies , Physician-Patient Relations , PsychometricsABSTRACT
The aim of this study was to clarify which themes and elements constitute professionalism in medicine. Three consecutive steps were taken: (a) a systematic search of the literature to identify constituent elements of professionalism mentioned in definitions and descriptions of the concept; (b) analysis of these elements using the constant comparison technique to reveal possible themes covering these elements; and (c) validating the results using an expert panel. A total of 90 separate elements of professionalism were identified in the 57 articles included in our study. Three themes within professionalism were uncovered: (1) interpersonal professionalism; (2) public professionalism; and (3) intrapersonal professionalism. These themes were considered accurate by the expert panel which supports the validity of the results. Our findings show that the concept of professionalism is multidimensional and should be conceptualized as such.
