Short summary

Danish patients with incurable cancer lack appropriate care to their unmet needs. The aim with the study is to develop a new cross-sectional model for organizing palliative care that can better secure an early patient-centered onset of the care and for the patients to improve their quality of life. The model will be developed through a patient-centered Participatory Design approach within three phases according to the Medical Research Council model.

Rationale

Palliative care is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness, whether physical, psychological, social or spiritual.

There are strong clinical data supporting the clear recommendations regarding an early integration of a concurrent palliative care in the cancer care settings given by WHO and professional organizations like ASKO and ESMO.

Palliative care is now accepted as a human right. As the cancer patients lives longer and with an increased complexity of both treatments and symptoms, the demand of palliative care has increased. Therefor WHO has updated its guidelines, where basic palliative care (BPC) provided by the primary care should be integrated to health care in a much greater extent to meet the needs.

Early BPC in the primary sector is a collaboration between the general practitioners, home care nurses and the oncology specialists. The nature of this interprofessional teamwork is dynamic and changes together with the patients' health condition. To succeed with maintaining a continuity, it requires a good communication and clear defined roles in the cooperation and coordination of the care.

The GP has a pivoting role in insuring all aspects of continuity through the trajectory of disease, from diagnosis until death, due to their ongoing relationship with the patients and families. As the patients and other health care professionals, they see themselves as team leaders of the palliative care. Therefore the GP is in a great position to have a more proactive role which includes identifying their patients with palliative needs and initiate the BPC. It has been shown that the GP, like other health care professionals, have difficulties with an early identification of the appropriate patients with advanced cancer.

Different tools and triggers have been developed to initiate early palliative care. Still, there are no consensus regarding referral criteria to secure early integration of palliative care. Furthermore, an early integration of palliative care leads to different working procedures and different tasks than a late involvement, which still is the most common. The early phases is more about proactive planning, patient education and to define the role of each healthcare professional involved including the patient's.

There are many barriers to this shared basic palliative care between primary care and oncology specialists, which lead to a care experienced as fragmented. Lack of cross-sectional communication between the oncology specialist and the GP and not including the patient in the team work are to major ones. The recognition of this gap of continuity has led to development and testing of different models and initiatives within the Danish health care system.

The results have been various which reflects the complexity of the palliative care. We hypotheses that shared palliative care, early integrated by the GP as a team leader and in collaboration with the oncology specialist, will contribute to consistency and a holistic care which will improve the quality of life of the patients. Therefore, the overall aim with the study is to face the challenges by developing and investigating, with participation of the users, if a new cross-disciplinary model of palliative care planning systematically can identify patient's values and needs in order to secure adequate and early onset of palliative care. Furthermore, we will focus on a model that will improve the cooperation between health care professionals cross-sectional and interdisciplinary.

The project will contain four studies. The aim for each study will be as follows:

Study 1:

To investigate the key components of the model and what experiences have been made with existing models regarding facilitators and barriers for cancer patients receiving early palliative care.

Study 2:

To explore the participants' experiences, needs, goals and wishes regarding palliative care and rehabilitation to base the new model on.

Study 3:

To test the acceptability and usability of the developed and chosen model.

Study 4:

To investigate if the new model can improve the patients' quality of life. Secondary aims will be patient reported adequacy of help, depression and anxiety.

Description of the cohort

Patientes over 18 years old diagnosed with any advanced cancer at Vejle Hospital will be included in the final randomized cotrolled trial. They will be randomized to use the developed model in the intervention group or to a control group receiving standard care.

Collaborating researchers and departments

Department of Oncology, Vejle Hospital

• Associate professor Torben Frøstrup Hansen, MD, Dr Med.
• Associate professor Lars Henrik Jensen, MD, PhD
• Professor Karina Dahl Steffensen, MD, PhD

Research Unit of General Practice, Department of Public Health, University of Southern denmark

• Professor Jens Søndergaard, MD, PhD