Case management in patients with Amyotrophic Lateral Sclerosis and their caregivers

The effectiveness of intensive case management in patients with Amyotrophic Lateral Sclerosis (ALS) and their caregivers

Status

Recruiting

Phases

Unknown

Study type

Interventional

Source

NL-OMON

Registry ID

NL-OMON21038

Enrollment

195

Registered

2008-04-08

Start date

2008-05-01

Completion date

Unknown

Last updated

2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Amyotrophic Lateral Sclerosis, ALS

Interventions

For 1 year a case manager maintains contact with ALS patients and their informal caregiver through home visits, telephone calls and e-mail designed to provide information regarding symptoms, aids and

Eligibility

Inclusion criteria

Inclusion criteria: 1. Diagnosed as clinically definite, clinically probable, clinically probable lab-supported or clinically possible Amyotrophic Lateral Scelerosis according to the El Escorial criteria. 2. Age > 18 years.

Exclusion criteria

Exclusion criteria: 1. Insufficient proficiency in the Dutch language. 2. Cognitive impairment (diagnosed through the cognitive screening test: Mini Mental State Examination < 20). 3. Residence in a hospice/terminal care unit.

Design outcomes

Primary

Measure	Time frame
Quality of life (ALSAQ-40)	—

Secondary

Measure	Time frame
Patient: - ALS specific symptomatology (e.g. fatigue, stiffness/spasticity, pain, breathing difficulty, cramps, sialorrhia: ordinal scale score) - Delivery time of aids and adaptations (recording time procedure request-delivery). - Actualisation of a PEG catheter and a meeting at the CTB (recording of the duration of the procedure issue-actualisation). - Restrictions in activities (ALSFRS-R) - Restrictions in autonomy and participation (IPA) Caregiver: - Caregiver burden (CSI). Patient and caregiver: - Quality of care (Quality of care questionnaire MITTZ) - Depression and Anxiety (HADS)	—

Measure

Time frame

Patient: - ALS specific symptomatology (e.g. fatigue, stiffness/spasticity, pain, breathing difficulty, cramps, sialorrhia: ordinal scale score) - Delivery time of aids and adaptations (recording time procedure request-delivery). - Actualisation of a PEG catheter and a meeting at the CTB (recording of the duration of the procedure issue-actualisation). - Restrictions in activities (ALSFRS-R) - Restrictions in autonomy and participation (IPA) Caregiver: - Caregiver burden (CSI). Patient and caregiver: - Quality of care (Quality of care questionnaire MITTZ) - Depression and Anxiety (HADS)

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Contacts

Public ContactHanneke Creemers

H.E.Creemers@UvA.nl+31 (0)20 525 1451

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)