Table 5 Suggested changes to the EPHECT intervention

Education for involved professionals

- Educational session of two hours for members of the PHC team consisting of group discussions, case studies and education on drug therapies and side effects

- Training for the PHC team in working with the intervention materials

- Involved oncologists will be informed about the intervention and the role of the PHC team

- Training was too short to make nurses of the PHC team comfortable in having discussions on oncology care

- Ongoing educational sessions or possibilities to contact oncologists if questions about oncology care arise.

- Educational sessions should focus more on involving the family caregiver.

General practitioner (GP) as coordinator of care

- GP will be contacted by data nurse to give permission for introducing PHC to his/her patient

- GP will then contact the PHC team to plan the first visit

- GP is the central coordinator of care and communicates with the PHC team and oncologist

- GP was rarely contacted by the PHC team, because the nurses of the PHC team thought it was not needed to contact the GP if the patient was stable.

- GPs reported difficulties in taking up the role of coordinator of care because they were not involved more than in standard care.

- Clear agreements have to be made about how and when communication has to take place, in dialogue with the involved GPs, PHC team and oncologists.

Regular home visits by the palliative home care (PHC) team

- In-person consultations with patient and family caregiver

- Recommendation of minimum one home visit per month, but to be discussed with patient in first consultation

- Consultations can be supplemented with in-between telephone contacts if needed

- Patients, family caregivers and nurses of the PHC team said that it was necessary to install monthly visits in the beginning of the trajectory to build up a relationship.

- Once the relationship is built, monthly visits are not needed as long as the situation is stable and visits should be planned according to the needs of the patients and family caregivers.

- Monthly consultations at the beginning of the trajectory.

- Later on: visits need to be planned according to the needs of patients and family caregivers.

- Regular follow-up by telephone on initiative of the PHC team.

Semi-structured contacts not only focusing on symptom management, but also on psychological and social care

- Semi-structured conversation guide to be used in home visits of the PHC team in which following topics are embedded:

o Understanding and perception of illness

o Routine symptom management (ESAS at each visit)

o Organization of care

o Coping mechanisms

o Quality of life of patient and family caregiver

o Preferences for future care

- Being involved earlier provided nurses of the PHC team time to not only focus on symptom management, but also on other core domains of palliative care as recommended in the semi-structured conversation guide.

- Coping of the family caregiver was the topic least discussed and some family caregivers reported in the interviews that they had the feeling during the intervention that the nurse of the PHC team was mainly focused on the patient.

- More attention needs to be given to the family caregiver in the home visits.

Interprofessional and transmural collaboration

- Collaboration and communication via telephone contacts

- Patients will be discussed by the PHC team during weekly meetings

- GP will be contacted after each home visit and if needed after weekly meeting

- If needed, GP will contact oncologist to discuss further actions

- Telephone-based contact was insufficient.

- GPs and nurses of the PHC team had different opinions about when contact was needed.

- GPs wanted to be the communicator between the PHC team and the oncologist, but were rarely contacted. Oncologists reported to prefer direct contact with the nurses of the PHC team.

- Face-to-face contact between all professional caregivers needs to be installed to discuss future care.

- Clear agreements have to be made about how and when communication has to take place, in dialogue with the involved GPs, PHC team and oncologists.