Short summary

The aims of this study are to investigate symptomatology and health related quality of life of Greenlandic patients with advanced cancer, to identify relatives' satisfaction with palliative care and to examine the existing palliative care services. The PhD study is divided in to four studies:

1. Systematic review
2. Symptomatology and health related quality of life of Greenlandic patients with advanced cancer
3. Satisfaction with care among relatives to patients with advanced cancer
4. Health professionals and palliative care services in the Greenlandic health system.

Rationale

Greenland has a population of approximately 56,000 inhabitants and the majority (over 90%) lives in West Greenland. The number of patients with cancer is increasing in Greenland. The incidence in 2011 was 195 with a rate of 344.4 per 100,000 inhabitants, compared with 320.6 in 2010. Currently 140 Greenlanders die annually from cancer.  The population's life expectancy is rising, but is still relatively low (68 years for men and 73 years for women). Since 1993 population surveys have shown that the main health problems are musculoskeletal disorders, diabetes, hypertension and cancer. The most common cancers in the period 1980-2009 are lung cancer, breast cancer, cervical cancer, colon, esophagus, pancreas, stomach, nose / throat, rectum and ovarium. Of 370 cancer-related deaths in 2008-201010% died at home, 12% in nursing homes and the rest in hospitals. A review of patient charts indicated that Greenlanders are diagnosed with cancer late in the disease trajectory, and there is a lack of continuous monitoring of mortality and survival.

Palliative care for patients with cancer are carried out in small village nursing stations, health centers in minor cities, regional hospitals in the cities, the nationwide Queen Ingrid Hospital in Nuuk and if not sufficient, it may be necessary to seek for assistance at Rigshospitalet or other hospitals in Denmark . There is neither specialized palliative care nor day-and-night-care in Greenland.

Therefore, there is urgent need to identify and describe the patients' and their relative's need as the basis for developing palliative care. In particular, the focus should be on how more palliative cancer patients may be able to spend more time in or near their own home with the family.

Description of the cohort

Greenlandic patients with advanced cancer and their closest relative are consecutively included. The inclusion criteria are:

• Greenlandic patients over 18 years and residence in Greenland
• Incurable cancer in the palliative phase with limited oncology treatment
• written informed consent

Data and biological material

Symptomatology and health related quality of life of Greenlandic patients with advanced cancer: The study is designed as a prospective longitudinal survey of adult Greenlandic patients with advanced cancer during one year. The Greenlandic Version of EORTC-QLQ-C30 will be used.

Satisfaction with care among relatives to patients with cancer: FAMCARE will be used for this purpose.

Data collection will be conducted by telephone.

Qualitative interviews with health professionals from the Greenland health care system will be carried out in order to examine existing palliative care services.

Collaborating researchers and departments

OPEN Odense Patient data Explorative Network, Odense University Hospital

• Professor Lise Hounsgaard, MSc, PhD

Section of Acute Pain Management and Palliative Medicine, Copenhagen University Hospital

• Professor and consultant Per Sjøgren, DMSc

Knowledge Centre for Rehabilitation and Palliative Care (PAVI)

• Professor Helle Timm

Arctic Public Health Research, Institute for Nursing and Health Sciences

• Adj. Clinical lecturer Michael Lynge Pedersen, PhD