1. EFPC Position Paper workshop PC & Chronic Cancer Nicosia, May 8, 2009 Danica Rotar – Pavlic, MD, PhD Pim de Graaf, MD, MPH European Forum for Primary Care (EFPC)

2. Aim The workshop is aiming at the professionals in primary care who are involved in cancer care planning, teaching at university or at practice level. The aim of the workshop is to work on “primary care empowerment”

3. Specific questions What are new demands on primary care practitioners, in terms of skills, tools, organisation and workload? In order to offer seamless care to patients, what examples can we find of effective collaboration between PC teams and secondary care? Do national cancer control plans address sufficiently chronic cancer care and the needs of primary care ? Do practitioners need other/better support to be able to offer palliative care? What adaptations and innovations occur in primary care delivery to answer the shift in care need of cancer patients; how do they take into account the needs of individual patients and their domestic situation?

4. Structure of the workshop Introduction of participants Presentation of the draft version of PC & Chronic Cancer (15 min) Identifying barriers, bridges and requirements – small group discussion (20 min) Reports from the groups Building bridges, managing barriers and achieving requirements - small group discussion (20 min) Reports from groups Confirming next steps and agreeing responsibilities End of the workshop

5. Introduction

6. For men it was 166/100 000 in the old members of EU, but in CEE (Central-Eastern Europe) countries the number was between 195/100 000 (Lithuania) and 269/100 000 (Hungary) For woman it was 95/100 000 in the old members of EU, but in CEE countries 98/100 000 (Lithuania and Latvia), 120/100 000 (Czech Republic) and 138/100 000 (Hungary).* *Dobrossy L:Cancer mortality in central-eastern Europe: facts behind figure,The Lancet Oncology,Vol 3,2002 Cancer mortality

7. Myths A GP on average sees only one new case of lung cancer per year. The core symptoms of lung cancer, cough and dyspnoea, are, on the other hand, very common in general practice which increases the risk of missing or delaying the diagnosis. “Missing” cancer during consultation in primary care may affect credibility and self confidence of GP’s. Myths have developed around this, like the idea that most cancers present to the GP with symptoms and that cancer is only considered or diagnosed in hospitals. As a result, secondary care data has been used to drive primary care decisions and little symptomatic diagnostic research in primary care has been done until recently.

8. Survivorship and remaining problems Little attention has been given to the GPsۥ potential role in relation to cancer rehabilitation process and the concept of survivorship. GPs often loose contact with the patients during their cancer treatment after referral to further diagnosing at hospital. After discharge from hospital, cancer patients often feel “left in limbo” and do not know where to seek help

9. Role and organisation of Primary Care Generalists should serve as an “ambassador for patients in a foreign land”. This statement from 1998 refers to patients in the hospital environment and reflects the view of many practitioners in primary care. Currently, navigation is the preferred term in primary care. Feed back to the GP during treatment and follow up often is lacking or delayed. While this phenomenon is widespread across Europe, some examples do exist of active involvement of GP’s and other staff in primary care, during the treatment phase.

10. Follow-up and survivors Routine follow-up care comprises: Surveillance for recurrence Surveillance for late effects of treatment, like fertility issues. Surveillance for new primary cancer Psychosocial and mental health issues Special concerns (social/economic/occupational) In addition, general medical and preventive care should be offered as to any other patient.

11. Palliative care One of the greater challenges in palliative care possibly is in ensuring that communication between oncologist and primary care – referral letter, telephone contact – is complete and timely. This should ensure coherent information to and communication with the patient and the family and also ensure that the GP participates in the discussion about the treatment options and intentions.

12. Example from Denmark In Denmark, Warfvinge et al currently are trying out a tele-home care and web-based communication system in palliative care to achieve precisely this: patient, family, GP and specialist have the same views on what purpose and practice of medication and other elements of palliative care.

13. National Cancer Plan In the draft version of Slovenian national cancer plan, special attention is given to the basic responsibilities of primary healthcare service providers in treating cancer. The rights of cancer patients and responsibilities of primary healthcare workers are not specifically defined.

14. Barriers Barriers which are met by primary care doctors in Slovenia are: Education in clinical oncology during residency is insufficient (i.e., one month); The adopted guidelines do not define the role of primary healthcare; Communication between the general practitioner and the oncologist mostly takes place via referrals; Full-year referrals to an oncologist diminish the role of the GP; The method of referring patients for rehabilitation from the primary level is not optimal; Generally insufficient inclusion of the primary level in palliative care.

15. Conclusion EFPS is interested in showing common developments and new challenges diversity of approaches and different initiatives good practice in service delivery supportive policy developments research agenda Important resources Edinburgh 2008 Copenhagen 2009 Nicosia 2009 Your contributions are highly valued