Assessing stakeholder opinion on relations between cancer patient groups and pharmaceutical companies in Europe.

BACKGROUND: The relationship between the pharmaceutical industry and cancer patient groups has been the subject of much scrutiny and skepticism, and some high-profile negative media coverage has focused attention on some of the problematic aspects of the relationship. Both the pharmaceutical industry and cancer patient groups have made an effort in recent years to improve the transparency and openness of their relations, specifically with regard to the financial support offered by pharmaceutical companies to patient groups. OBJECTIVE: The objectives of this survey were to benchmark perceptions held by different stakeholder groups about current relationships between cancer patient groups and pharmaceutical companies in Europe, and to explore opinions about ways in which partnerships between patient groups and pharmaceutical companies could evolve to the benefit of cancer patients. METHODS: The survey was conducted using a structured questionnaire that contained a combination of matrix, scaled, and open-ended questions. The questionnaire was developed based on a literature search and the findings from ten in-depth interviews conducted with policy makers and advocates working at an EU level. Telephone interviews were carried out using a structured questionnaire with a convenience sample of 161 policy makers, cancer healthcare group representatives, and cancer patient group leaders from France, Germany, Hungary, Italy, Latvia, the Netherlands, Poland, Portugal, Romania, Spain, Sweden, and the UK. The interviews took place in the relevant language of the country. RESULTS: The current relationship between the pharmaceutical industry and cancer patient groups in Europe is generally viewed as positive, but it is also viewed as being unequal, not transparent enough, and not sufficiently patient-centric. There is broad agreement that cancer patient groups can help companies identify unmet needs and contribute to the development of innovative medicines; however, there is some concern about cancer patients' competence to take on this role. Also, pharmaceutical companies and patient groups have a common interest in working together on the development of non-promotional patient information and strategies to support medicines adherence. Respondents also indicated that the two sectors have a legitimate interest in ensuring that patients in need access appropriate treatments in a timely manner. Ongoing cooperation between health professionals, pharmaceutical companies, and cancer patient groups is also viewed as important. Efforts should continue to make relations between pharmaceutical companies and cancer patient groups as equal, open, and transparent as possible. CONCLUSION: Despite ongoing concerns about the openness and transparency of relations between pharmaceutical companies and patient groups, there is scope for these two sectors to work together on issues of common interest.

A European survey on the detection and management of iron overload in transfusion-dependent patients with MDS.

To better understand the detection and management of iron overload in transfusion-dependent patients with myelodysplastic syndromes (MDS), a 15-min web- or paper-based survey was conducted among 338 European physicians from 27 countries. Respondents had a mean of 18 years of clinical experience. Forty-six percent and 27% of physicians noted that detecting and treating iron overload were either "very important" or "important," respectively. The main reason for not actively exploring iron overload was related to poor patient prognosis, while the main reasons for not initiating iron chelation therapy were poor patient prognosis and older patient age. Thirty-seven percent and 31% of physicians believed that treating iron overload in these patients was "very important" or "important," respectively. Ninety percent of physicians prescribed iron chelation therapy, and 38% of transfusion-dependent patients received iron chelation therapy. The key reasons for not initiating iron chelation therapy were related to poor patient prognosis (72%), patient age ≥85 years (50%), and comorbidities (34%). The views of these experienced MDS physicians reflect available international MDS treatment guidelines.

Patients' knowledge and experience of adjuvant endocrine therapy for early breast cancer: a European study.

Little is known about patients' experience of, and knowledge about adjuvant endocrine therapy. A European survey was carried out to explore this knowledge gap. The 547 post-menopausal women with early breast cancer, from 9 European countries, completed a questionnaire about their experience and knowledge of their therapy. Forty one percent of women surveyed were not at all involved in the decision to start adjuvant endocrine therapy and only 10% were fully involved. Only 57% received information about possible side effects, 26% about the risk of their cancer returning and 15% about the possible long term effects of treatment. Older women, less educated women or those without Internet access were less likely to receive information or be involved in decision making. Women's right to information and involvement in decision making are not respected. Greater efforts are required to ensure that all patients understand how different therapies work so that they can make informed decisions.