Together we can: experiences from 7 years of cross-sectional studies in a Swedish palliative care clinical research network

Abstract

During recent years, research networks and collaboratives focusing on palliative care research have been established both nationally and internationally resulting in several ongoing projects. In 2002, a clinician-based research network, the Palliative Care Research Network in Sweden (PANIS), was established to stimulate research and development of palliative care in Sweden. The growing network, which today includes 60 specialized palliative care units, has used a web-based survey generator to collect data on symptom prevalence, treatment traditions and important issues in palliative care. Eleven different studies involving almost 11,000 patients have been performed within the network including studies on prevalence of antitumoral treatment, the use of opioids, corticosteroids, blood transfusions, parenteral nutrition and prevalence of palliative sedation therapy in specialized palliative care. The working method of the research network is described, and demographic data from 9,298 patients in six cross-sectional studies are presented. Using a relatively simple research methodology, the network has succeeded in addressing key clinical questions and in this article we share experiences and challenges met during the journey.

Keywords

cancer palliative care research methodology research network

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References

Kaasa S. , De Conno F. Palliative care research. Eur J Cancer 2001 ; 37(Suppl 8): S153-S159.

Kaasa S. , Loge JH , Fayers P. , et al. Symptom assessment in palliative care: a need for international collaboration. J Clin Oncol 2008; 26: 3867-3873.

Payne S. , Addington-Hall J. , Richardson A. , Sharpe M.

Supportive and palliative care research collaboratives in the United Kingdom: an unnatural experiment?

Palliat Med 2007; 21: 663-665.

Gomez-Batiste X. , Porta-Sales J. , Pascual A. , et al. Catalonia WHO palliative care demonstration project at 15 Years (2005). J Pain Symptom Manage 2007; 33: 584-590.

Currow DC , Eagar K. , Aoun S. , Fildes D. , Yates P. , Kristjanson LJ

Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care?

J Clin Oncol 2008; 26: 3853-3859.

Abernethy AP , Hanson LC , Main DS , Kutner JS Palliative care clinical research networks, a requirement for evidence-based palliative care: time for coordinated action. J Palliat Med 2007; 10: 845-850.

Kutner JS , Main DS , Westfall JM , Pace W. The practice-based research network as a model for end-of-life care research: challenges and opportunities. Cancer Control 2005; 12: 186-195.

Lundström S. , Strang P. Establishing and testing a palliative care research network in Sweden. Palliat Med 2004 ; 18: 139.

Palliative Care Research Network in Sweden (PANIS) http://www.panis.se.

10.

Lundström S. , Bystrom E. , Gyllenhammar E. , Martinsson U. , Norrstrom B. , Strang P. Palliative medicine network promotes research and development. Lakartidningen 2005; 102: 1235-1238.

11.

Martinsson U. , Lundstrom S. The use of blood transfusions and erythropoietin-stimulating agents in Swedish palliative care. Support Care Cancer 2009; 17: 199-203.

12.

Eckerdal G. , Birr A. , Lundström S. Palliativ sedering är ovanlig inom specialiserad palliativ vård i Sverige. Lakartidningen 2009; 106: 1086-1088.

13.

Nhpco. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, 2008 .

14.

Kaasa S. , Hjermstad MJ , Loge JH

Methodological and structural challenges in palliative care research: how have we fared in the last decades?

Palliat Med 2006; 20: 727-734.

15.

Christakis NA Advances in palliative care research methodology . Palliat Med 2006; 20: 725-726.

16.

Lundström S. , Furst CJ The use of corticosteroids in Swedish palliative care. Acta Oncol 2006; 45: 430-437.

17.

Lundström S. Is it reliable to use cellular phones for symptom assessment in palliative care? Report on a study in patients with advanced cancer. J Palliat Med 2009; 12: 1087-1087.