Treating metastatic lung cancer. What are patients* and physicians* goals and are they achieved?

Aggressive end-of-life care is prevalent and negatively influences survival and
quality of life in lung cancer patients. Still, in patients with metastasized
lung cancer chemotherapy is usually suggested as the treatment of choice. This
can lead to overtreatment, especially when chemotherapy is still given shortly
before the death of patients. This is considered a negative quality indicator
for end-of-life care. Unfortunately, many patients have a limited understanding
about their prognosis and alternative treatment options. They may also
overestimate the effectiveness of chemotherapy. Little is known about the goals
and expectations patients and oncologists have before starting a new line of
chemotherapy at the end-of-life and whether these goals are achieved. Neither
do we know whether these goals differ between the patient and their oncologist.
This is even more true for new therapies, like immunotherapy and targeted
therapies. While these differ from chemotherapy in potential life prolongation
and burdensome side effects, it is likely that (achievement) of goals might be
different for these therapies. The described lack of knowledge may compromise
their ability for shared decision-making, which now highly depends on the
communication skills and treatment preferences of their physician. We
hypothesize that less than 50% of goals that patients and oncologists have
before starting chemotherapy are being achieved.

To examine the goals of patients and doctors for treatment with chemotherapy,
immunotherapy or targeted therapy in metastatic lung cancer and whether these
goals are achieved according to patients, doctors and relatives.

To study the goals that patients and doctors have for medical treatment in
metastasized lung cancer and the achievement of these goals, we will conduct a
prospective longitudinal effectiveness study. Before starting and after
finishing chemotherapy, patients and their prescribing oncologist will
separately complete a questionnaire on their (achievement of) treatment goals.
We will also ask whether, in retrospect, it was a good decision to start
chemotherapy. At the same time points, patients will also complete the
EORTC-QLQ-PAL quality of life questionnaire. If the patient died, a relative
will be asked via a telephonic interview about the last weeks of life of the
patient and about their own experiences. Qualitative, semi-structured
interviews will be held with about 15 patients and a focus group with
oncologists to get more in depth view of the answers to the questionnaires.

Participants are asked to fill in one questionnaire at two different time
points. The total duration per participant in this study will be 1 hour. If the
patient died, a relative will be asked via a telephonic interview about the
last weeks of life of the patient and about their own experiences. This will
take up to 30 minutes of their time. There are no risks associated with
participation.