At the end of 2015, we have launched a first
online survey, whose objective was to better know you, our members, and from that precious knowledge understand how to fully address your professional needs and expectations at every level.
We received more than a hundred answers, and this survey showed that most SIOPE members’ expectations have been fulfilled (77,7%). Your decision to join SIOPE is mainly driven by the opportunity to take part in European research and EU projects (76,7%), one of the key advantages of becoming a member of our Society. Other reasons include to stay up-to-date and receive regular communications from SIOPE, to see your professional interest represented at the European level and to “shape the future of paediatric oncology”. Comments highlighted the need to support the priorities of clinical trial groups, to foster links with parent/patient groups, to bring countries at a higher level of practice in paediatric oncology, and to support the efficient application of current protocols.
Interesting paediatric oncology topics are the main reason convincing members to attend the SIOPE events (83%), followed by the multidisciplinarity that characterises them and the networking opportunities offered by face-to-face gatherings. As expected, professional obligations are the main reason preventing members to attend our events (64,9%), followed by the distance and the costs related to reaching the event venue. Per most respondents, events focusing on EU advocacy should take place once a year (72,3%), while project-specific meetings twice a year (52,13%). A few answers stressed the need to meet with external stakeholders and to hold more meetings if there is a strong message to deliver.
Considering education, and having to select among the topics included in the
SIOPE Syllabus, respondents think that the current knowledge gaps among paediatric oncology professionals in Europe are:
- Molecular markers as diagnostic and prognostic tools and treatment implications (36,2%);
- Ethical issues, consent, data protection;
- Possible neurological, endocrinological, cognitive, behavioural and social sequelae of tumours and their treatment;
- Interactions between chemotherapy and concomitantly administered drugs, complications related to chemotherapy.
Most respondents (78,8%) receive regular communication updates from SIOPE, and think that their quality is overall quite good. The contents of the SIOPE newsletter and website are considered very good, while the content of our social media messages is less valued. Comments highlighted that the current SIOPE communication should possibly incorporate more information and/or webinars on educational topics, research opportunities, treatment protocols for different paediatric cancer types as well as information on modern therapies and treatment of rare diseases.
Asked to rate their familiarity with each topic in which SIOPE is involved, respondents revealed to be aware of the current SIOPE initiatives in the field of teenagers and young adults with cancer (TYA), the existing inequalities in patients' access to childhood cancer care across Europe as well as the specificities of childhood cancer survivorship. Surprisingly, not all SIOPE members are aware of the existence of the
SIOPE Strategic Plan 'A European Cancer Plan for Children and Adolescents': slightly more than half of the respondents know the Plan, but most of them do not have a hard copy of it and don’t use it to raise awareness at the national level. They revealed to be aware of the current SIOPE partnerships with patients, parents and survivors, other European/international cancer societies and paediatric nurses, but not of those with charities, adult oncologists, and pharmaceutical industries.
Overall, the 2015-2016 survey was successful, and this effort benefitted from the priceless cooperation of each national society of paediatric haemato-oncology. the average respondent of this survey is a paediatric oncologist/haematologist (73,8%) – with the following sub-specialities represented: paediatrics, oncology, neuro-oncology/surgery, haematology, radiation oncology, endocrinology, and long term follow-up – although SIOPE also managed to reach healthcare professionals with different profiles, from nurses to surgeons.
This survey was a first step in the direction of building a more tailored relationship between the SIOPE Board and Secretariat and each individual member. To allow an even deeper insight about the current and potential members of SIOPE, we recently launched a
second SIOPE survey, directed to both members and not-members. Tested “live” at the SIOP Congress 2016 in Dublin, this new
SIOPE survey on the needs and expectations of the paediatric oncology community is now available online until December 24
th, 2016.
We will draw 5 full free registrations to the ECCO2017 and the SIOPE Society Day (of the value of €645) among all SIOPE members who will respond to this survey before the end of November 2016
THANK YOU so much for your kind collaboration, we will do our best to translate each of your views in more concrete initiatives to facilitate your daily work.
