A cross-sectional study on the determinants of lack of scope: adding positive factors

In health care decision-making, valuations of health outcomes, so-called health
state utilities, play an important role. Utilities are used at various levels
of decision-making, and depending on the level they should be assessed either
from the general public or from patients. Differences in valuations of health
states have been seen between the general public and patients, and between
patients anticipating health states and patients experiencing those states. Our
research project aims to explain this difference in health state valuations.

In this study, we study whether there is a difference between the utilities
that patients with Rheumatoid Arthritis assign to their own health and those
that they assign to the EQ-5D scenario describing that health (lack of scope).
Further, we aim to find out whether this difference is explained by positive
factors not incorporated in the scenario (psychological well-being, meaning in
life, happiness).

A sample of 300 patients with Rheumatoid Arthritis will be selected from all
patients who in the last 18 months have been treated at the department of
Rheumatology of LUMC. These patients will receive a letter from the head of the
out patients clinic to inform them about this study. A patient information
leaflet, an informed consent form and an answer envelope will be included.
The patients will be interviewed about the following topics: the valuation of
their health state, quality of life, the valuation of six hypothetical health
states, and aspects of life that they said they incorporated when valuing
their own health status. After the interview, the patient will receive a
written questionnaire and is asked to fill out this questionnaire within a week
and to return it to the researchers. The questionnaires contains questions
about general and disease-specific quality of life, mood, meaning in life,
acceptance, life satisfaction, well being, self-efficacy, mastery, social
comparison and optimism.

We expect that participation in the study (interview, questionnaire, and time
for traveling if applicable) takes about two hours for each patient. Besides
the costs in terms of time, this study asks patients to express their opinion
about their quality of life and the valuation of their health state. Patients
can experiences this as positive, but also as burdensome.