Background: Research in palliative care is often rendered difficult because of small patient materials. It's therefore important to find new solutions to this problem. The physicians in the Swedish association for palliative medicine have canalized this discussion and in an attempt to overcome this we initiated in 2002 a palliative care research network in Stockholm, Sweden. The network was formed, aimed at getting answers from a large group of patients on questions of symptom prevalence, treatment traditions and problems in palliative care.
Method: To test the network, each palliative care centre received a questionnaire distributed through e-mail. The pilot questions concerned the occurrence of hiccups among patients in palliative care. The physician registered each of the patients at the unit and the results were sent through email to the network coordinator for analysis. The initial survey has been followed by one about the occurrence of antitumoral treatment in palliative patients and recently a survey about the use of opioids in palliative care.
Results: At the moment, 21 palliative care units participate in the network. The first survey received results covering 250 patients; 13% of the patients had hiccups and the majority of these had gastrointestinal tumours. The second survey collected information about 523 patients, of which 35% received chemotherapy with the purpose of palliation. The current survey about opioids is estimated to include over 800 patients.
Conclusions: The network has been successful in collecting answers from a large group of patients. The amount of patients receiving chemotherapy was far beyond what we had expected.We will aim for a national network in 2004 and will at that time have a web based survey generator to simplify the handling of the results and get instant feedback to the participants.