Optimization of complex palliative care at home by making use of expert consultation via telemedicine - a quantitative study

Due to the aging population and the wish of most people to die at home ,
palliative care at home will gain increasing importance during the coming
years. However, many terminal patients at home experience a burdensome transfer
to the hospital at the end of life due to problematic symptom burden. The
availability of a telemedicine application for care at a distance brings
palliative expertise from the academic expertise center into home care. This
will support palliative care at home and may also prevent these home-hospital
transfers. For this reason, the suitability of the use of telemedicine for
palliative care at home deserves further research.

The primary objective of the study is to improve palliative care at home by
making use of teleconsultation. This application makes the expertise of the
specialist team of the knowledge center for palliative care from the UMC St.
Radboud directly accessible for patients at home. The presumptiom is that the
use of telemedicine for palliative care at home stimulates a better symptom
control in advanced cancer patients. Note that this system is developed to
support the care of the general practitioners who is the final responsible
doctor at home.

Secondary objectives are: 1) to investigate the satisfaction with the
teleconsultation, 2) to investigate the recognition of psychosocial and
spiritual problems, 3) to investigate the number of hospital admissions, and 4)
to investigate the level of distress of informal caregivers, 5) to investigate
the quality of care as experienced by the patient.

The study design is a cluster randomised clinical trial. There will be a
measurement between the intervention group and the control group to compare the
symptom burden of the patients of both groups (based on repeated measures ).

General practitioners will be approached to consider patients for inclusion.
After that, patients who consent to participate will be included in the study
by the researchers.

The intervention concerns a teleconsult palliative care. This will be performed
by the palliative care team of the UMC St. Radboud as a co-treater (the general
practitioners remains the main responsible physician). In a digital screen to
screen contact between the palliative team and the patient, a protocolised
pallitative care intervention of the patient will be made. This will be
followed by a digital treatment advice towards patient and general
practitioner. The videocontact will be held weekly and a patient record will be
held by the palliative care team. The general practitioners remains the main
responsible and together with the patients he/she needs to agree with the
treatment advices of the team.

The patient has to consent to a weekly video consult. This involves that an
ICT-technician will bring in and prepare the system for videoconsultation. In
addition, the patient needs to attend a weekly consultation. This can be
burdensome for patients in the last phase of life. Notwithstanding, not all
video consultation need to involve much time. Probably the first (the
inventarisation) will be the most intensive. Another source of burden may be
the efforts to provide answers to the questionnaires. We have tried to make
this easier for the patient by having only one short questionnaire on a weekly
base, whereas other questionnaires will be on a 4 weekly base. We do not see
direct risks for the health of the patient because the telemedicine application
does not replace usual care, but tries to optimize it. This is also the
advantage of the patients who participate. There is an expectation that
patients with telemedicine will experience improved care during the last phase
of their live.