Life situation, living conditins and quality of life in patients with invasive home mechanical ventilation: evaluation based on questionnaires and open interview

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00006524

Enrollment

Registered

2014-07-22

Start date

2014-10-07

Completion date

Unknown

Last updated

2025-04-07

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

Conditions

J96.1

Interventions

Group 1: Onetime application of questionnaires and an open interview.

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: Invasive home mechanical ventilation for at least one month before enrolment, signed informed consent, stable phase of the disease

Exclusion criteria

Exclusion criteria: last hospitalization within one month before enrolment caused by acute deteration, audio med. deafness, mental retardation

Design outcomes

Primary

Measure	Time frame
Summary Score of the Severe respiratory Insufficiency Questionnaire (SRI): Patients were asked to fill in the original German version of the SRI Questionnaire. It contains 49 items with seven subscales measuring different aspects of HRQL (Respiratory Complaints, Physical Functioning, Attendant Symptoms and Sleep, Social Relationships, Anxiety, Psychological Well-being, Social Functioning). Each subscale produces a score between 0 and 100, with lower scores indicating poorer health. The scales can be aggregated to one Summary Score. Answers are given on a 5-point Likert scale ranging between “does not apply at all” and “does fully apply”.	—

Measure

Time frame

Summary Score of the Severe respiratory Insufficiency Questionnaire (SRI): Patients were asked to fill in the original German version of the SRI Questionnaire. It contains 49 items with seven subscales measuring different aspects of HRQL (Respiratory Complaints, Physical Functioning, Attendant Symptoms and Sleep, Social Relationships, Anxiety, Psychological Well-being, Social Functioning). Each subscale produces a score between 0 and 100, with lower scores indicating poorer health. The scales can be aggregated to one Summary Score. Answers are given on a 5-point Likert scale ranging between “does not apply at all” and “does fully apply”.

—

Secondary

Measure	Time frame
1. Catalogue: Patient-specific data is collected using a cataloque which covers the following topics: • socio-demographic data • medical history • home environment/ place of domicile • nursing care • outpatient medical care • mechanical vcentilation • supply of technical aids • therapeutic treatements • activities of daily living incl. nutrition, communication, mobility • social contacts • daily routine • legal guardian • psychological well-being • religion/faith 2. Evaluation of life situation and living conditions questionnaire: Patients evaluate the topics from above by filling in the questionnaire. The questions are to be answered with Yes (I'm satisfied) or No (I'm not satisfied). 3. Interview To complement catalogue and questionnaire open interview questions are asked regarding following topics: • individual life circumstances • health related quality of life • unsolved problems concerning underlying disease and treatment • dealing with dying and death • Role of religion and faith to cope with the disease.	—

Measure

Time frame

1. Catalogue: Patient-specific data is collected using a cataloque which covers the following topics: • socio-demographic data • medical history • home environment/ place of domicile • nursing care • outpatient medical care • mechanical vcentilation • supply of technical aids • therapeutic treatements • activities of daily living incl. nutrition, communication, mobility • social contacts • daily routine • legal guardian • psychological well-being • religion/faith 2. Evaluation of life situation and living conditions questionnaire: Patients evaluate the topics from above by filling in the questionnaire. The questions are to be answered with Yes (I'm satisfied) or No (I'm not satisfied). 3. Interview To complement catalogue and questionnaire open interview questions are asked regarding following topics: • individual life circumstances • health related quality of life • unsolved problems concerning underlying disease and treatment • dealing with dying and death • Role of religion and faith to cope with the disease.

—

Countries

Germany

Contacts

Public ContactJan Hendrik Storre

Lungenklinik, Abteilung PneumologieKliniken der Stadt Köln

storrej@kliniken-koeln.de0221-8907-18344

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026