A randomized clinical trial of group medical appointments for patients with chronic neuromuscular disease. A comparison with usual care in terms of quality of life and cost-effectiveness

Most neuromuscular diseases are chronic progressive diseases necessitating
periodic specialized care. Currently, these patients attend the out-patient
clinic at regular intervals (usually annually), where they are seen in
one-to-one patient- physician encounters. It is difficult, however, to fulfill
the complex needs of neuromuscular patients in these brief, problem-focused
out-patient visits which leave little time for the patient's psychosocial
needs, patient education, and patient empowerment. It is possible that the
concept of a group medical appointment or group visit give a better opportunity
to fullfil this needs.
During a group medical appointment a number of patients and their partners are
seen simultaneously by a physician and a specialized nurse or psychologist.
Group medical appointments are a series of one on one doctor- patient contacts,
in presence of a group fellow patients. This group visit takes 1,5 - 2 hours
and substitutes the annual control visit the patients pay to the neurology
department. The same items the neurologist attends to in a one on one
appointment are attended to during the group medical appointment. The
physician has more time to give information to the patient and patients and
partners can ask questions to- and learn from their fellow patients.

To compare group medical appointment as a novel approach in care for chronic
neuromuscular patients with conventional outpatient visits, in terms of health
outcomes and costs.

A randomised, prospective, controlled study will be performed comparing the
effect of group medical appointments with the regular private one-to-one
appointments. At least two neurologists will participate, doing the regular
outpatient care as well as the group medical appointment.

The intervention group takes part in one group medical appointment. This group
medical appointment replaces te annual visit to the neurologist of this one
patient.
The controlgroup receives care as usual: ann individual visit of 20-30 minutes
with the neurologist.

Patients visit the hospital as often as during usual care. The group medical
appointment replaces the annual visit with the neurologist. The group medical
appointment takens approximatelijk 90 minutes, while an individueal visit takes
20-30 minutes.
The patients are being asked toe return a questionnaire four times. At
baseline, one week after the visit, 3 months after the visit and 6 months after
the visit. This will cost half an hour per questionnaire per patient. The
questionnaires are about quality of life, self efficacy, social support,
functional activities and use of care.
The potential risks for participants are very small. Possibly patients in the
interventiongroup will feel inhibited to ask all the questions they have for
the neurologist. To reduce this risk patients will be asked at the start of the
group medical appointment to writ a confidentiallity form. Also patients will
be noticed that there is always the possibility of having a private
conversation with the neurologist after the group medical appointment.