Validity and Reliability of the Northwestern Ego Integrity Scale in patients with amyotrophic lateral sclerosis

Validity and Reliability of the Northwestern Ego Integrity Scale in patients with amyotrophic lateral sclerosis - Ego-Integrity in ALS

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON44390

Enrollment

Registered

2017-09-18

Start date

2017-09-25

Completion date

Unknown

Last updated

2024-04-15

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

Conditions

Amyotrophic lateral sclerosis motor neuron disease

Interventions

None listed

Eligibility

Age

18 Years to 99 Years

Inclusion criteria

Inclusion criteria: Diagnosis of ALS, Progressieve Spinal Muscular Atrophy (PMA) or Primary Lateral Sclerosis (PLS) Currently under the care of a rehabilitation specialist -No cognitive impairments as judged by the rehabilitation specialist of the patient -Documented score on the ALSFRS-R -Sufficient fluency in the Dutch language to complete study questionnaires -Aged 18 years or older

Exclusion criteria

Exclusion criteria: - If the patient has received the diagnosis less than 6 months ago - Diagnosis of frontotemporal dementia - Other life-threatening diagnosis or patients who are in the finale stage of the disease

Design outcomes

Primary

Measure	Time frame
Ego-integrity as measured by the Northwestern Ego-Integrity Scale (NEIS). The NEIS is a self-reported, 15 item questionnaire measuring ego-integrity and despair, with higher mean scores indicating more despair and ego-integrity.	—

Secondary

Measure	Time frame
Psychological distress assessed with the Hospital Anxiety and Depression Scale (HADS): The HADS is a 14 items questionnaire which measures depression and anxiety. This questionnaire is specifically validated for patients with a (chronic) disease. The HADS consists of two subscales: HADS-D (7 items) measuring depression and HADS-A (7 items) measuring anxiety. Higher scores reflect more anxiety and/or depressive symptoms. Illness cognitions assessed with the Dutch questionnaire "Ziekte Cognitie Lijst" (ZCL): The ZCL consists of 3 subscales: helplessness (6 items), acceptation (6 items) and disease benefits (6 items). The scores per scale range from 6-24. Sense of hope assessed with the Dutch version of the Herth Hope Index (HHI), a short (12 item) questionnaire that assesses the cognitive, affective, behavioral, temporal, and contextual dimensions of hope.	—

Measure

Time frame

Psychological distress assessed with the Hospital Anxiety and Depression Scale (HADS): The HADS is a 14 items questionnaire which measures depression and anxiety. This questionnaire is specifically validated for patients with a (chronic) disease. The HADS consists of two subscales: HADS-D (7 items) measuring depression and HADS-A (7 items) measuring anxiety. Higher scores reflect more anxiety and/or depressive symptoms. Illness cognitions assessed with the Dutch questionnaire "Ziekte Cognitie Lijst" (ZCL): The ZCL consists of 3 subscales: helplessness (6 items), acceptation (6 items) and disease benefits (6 items). The scores per scale range from 6-24. Sense of hope assessed with the Dutch version of the Herth Hope Index (HHI), a short (12 item) questionnaire that assesses the cognitive, affective, behavioral, temporal, and contextual dimensions of hope.

—

Countries

Netherlands

Outcome results