Scientific research COMFI: Effectiveness of occupational therapy for fatigue in progressive neurological diseases

About this study

Fatigue is one of the most common and impactful symptoms in people with progressive neurological disorders. This type of fatigue does not improve with rest or sleep. It has a major influence on daily life, and many people find it harder to keep up with everyday activities such as working, cooking, or meeting with others.

How can occupational therapy help?

Occupational therapy can support people in dealing with fatigue. An occupational therapist reflects together with someone at their daily schedule and how they use their energy. The goal is to gain more control over everyday life.

To do this, occupational therapists use different methods, such as:

• The Activity Calculator
• The Packer Managing Fatigue Program

These methods give insight into how someone uses their energy and offer practical tips to plan or carry out activities in a different way.

What are we studying?

We are studying whether the combination of the Activity Calculator and the Packer Managing Fatigue Program helps people more than receiving no treatment.

The study takes place in primary care occupational therapy and includes people with neurological conditions such as Parkinson’s disease, neuromuscular disorders, ataxia, and hereditary spastic paraplegia (HSP).

What do we hope to achieve?

We will evaluate whether participants can better engage in daily activities, experience more balance, and improve their ability to manage fatigue. In addition, we will explore how this treatment can be implemented in primary care and what the associated costs and benefits are.

Treatment

Participants are randomly assigned to two groups. Two‑thirds will be placed in the intervention group and one‑third in the control group. The groups are compared after three months.

Group 1: Intervention group

Participants receive a combination of two occupational therapy programs (the Activity Calculator and the Packer Managing Fatigue Program).

The treatment:

• lasts three months;
• includes up to 10 hours of individual occupational therapy (covered by basic health insurance);
• takes place at the OT practice or at home.

Participants also complete questionnaires at three time points and have a short conversation about their daily activities. They are additionally invited for an interview about their experiences.

Group 2: Control group

Participants are on a three‑month waiting list. After this period, they may start the program, but this does not count as part of the study.

They complete questionnaires at two time points and have a short conversation about their daily activities. They do not take part in interviews.

Referral information

Participants are eligible for inclusion when they meet the following criteria:

1. Age ≥ 18 years.
2. Diagnosed with one of the following progressive neurological disorders:
   • Parkinson’s disease or atypical parkinsonism
   • Neuromuscular disorders (muscle diseases)
   • Ataxias
   • Hereditary spastic paraplegia (HSP)
3. Moderate to severe fatigue that has a substantial impact on daily functioning (activities and participation).
4. Living independently at home, either alone or with others.
5. Willingness and ability to actively participate in a primary care occupational therapy program focused on energy management.
6. Motivation to receive support for managing fatigue, including completing exercises, assignments, and reflections that are part of the intervention program.

Participants will be excluded if any of the following apply:

1. Depressive symptoms or diagnosed depression.
2. Cognitive impairments severe enough to make participation in the program infeasible (e.g., limited learning capacity, insufficient insight).
3. Insufficient proficiency in the Dutch language.