Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation.

OBJECTIVE: The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients. METHODS: Thirteen semi-structured interviews were conducted in patients with hereditary hemorrhagic telangiectasia. RESULTS: Qualitative grounded theory analyses were performed using the participants' transcripts and revealed the following six categories: Impact of physical symptoms on daily life, Quality of family and social life, Emotional and psychological outcomes related to the disease, Knowledge having a severe disease and coping strategies to manage such disease, Recognition of the disease by professional colleagues and superiors, and Knowledge and understanding from health professionals in medical care. CONCLUSION: The definition of quality of life that emerged from the participants' transcripts was essentially related to health. Individuals with hereditary hemorrhagic telangiectasia mainly focused on the physical, psychological and emotional impacts of the symptoms and their consequences on professional life and social activities. Family relationships were also highlighted in the participants' transcripts. As such, HHT patients used coping strategies to manage their disease. Finally, a particularly salient issue referred to the lack of knowledge concerning the rare nature of this disease and the ensuing inherent sense of misunderstanding.

[Motivations and obstacles to occupational disease claims in lung cancer patients: an exploratory psychosocial study]. / Moteurs et freins à la reconnaissance en maladie professionnelle des patients atteints de cancers bronchiques : une étude psychosociale.

PURPOSE: The proportion of lung cancers with an occupational origin has been estimated to be between 10 and 20%. They are largely under-reported, as 60% are not compensated as occupational disease. Although most patients are not familiar with the process of compensation, other factors could explain this under-reporting. The aim of this study was to identify psychosocial factors that could impact patients with occupational lung cancer to claim for compensation. METHODS: We conducted a case study involving semi-structured interviews with eight lung cancer patients enrolled in a cohort designed to systematically screen occupational exposures and propose claims for compensation to work-related cancer patients. RESULTS: Seven interviewed patients were familiar with occupational cancers, but most of them did not believe that past exposure could be related to their current disease. Patients associated compensation claims with a long and complex procedure for an abstract purpose. Several patients expressed a certain attachment to their employers. CONCLUSION: Interviewed patients often considered compensation claims to be a grievance procedure against the employers whom they did not consider to be responsible for their disease. Lung cancer is itself an obstacle to compensation considering the aggressive treatments and related adverse events, the poor medium-term prognosis and the predominant role of smoking in the etiology of the disease. Patients mentioned the financial compensation and the role of healthcare professionals as key elements to motivate them to claim for compensation.

[Reflections about the efficiency criteria for cancer treatments during marketing authorization application]. / Réflexions sur les critères d'évaluation des traitements anticancéreux lors des procédures d'autorisation de mise sur le marché

Although clear and validated recommendations exist concerning the evaluation of cancer treatments at the international level, the criteria retained to obtain the marketing authorization (MA) are multiple and heterogeneous. This qualitative survey explores the opinion related to the assessment of cancer treatment among the several concerned population. By the way of semi-structured interviews, our aim was to elicit perceptions toward the criteria which should be retained during the process of MA, by patients, oncologists, members of the pharmaceutical industry, health decision-makers and general population. Our survey emphasizes the variability of the significations associated with the criteria of efficiency of cancer treatments according to the characteristics of the respondents. We also have observed some common expectations from patients and oncologists toward the economic and political aspect, but also from the whole respondents toward the importance of the comfort of the patients. Lastly, the necessity to define specific criteria related to clinical cases emerges.