Clinical trial NCT04008862: Partnership-based Nursing Practice for Lung Patients and Their Families
Official title: Characteristics and Effectiveness of a Partnership-based Nursing Practice for Patients With Chronic Lung Diseases and Their Families
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Chronic Obstructive Pulmonary Disease
Family
Chronic Disease
Keywords: Chronic Obstructive Pulmonary Disease
Self-management
Palliative care
Family
Chronic Disease
Nursing practice
Lead sponsor: Landspitali University Hospital
Sponsor class: OTHER
Collaborators: name: University of Iceland
First posted: 2019-07-05
Enrollment: 60
Sex: ALL
Minimum age (years): 50
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SEQUENTIAL
Intervention model description: Longitudinal design, participants serve as their own control.
Primary purpose: SUPPORTIVE_CARE

Brief summary: This study aims to describe and measure the effectiveness of partnership-based nursing care for people with Chronic Obstructive Pulmonary Disease (COPD) and their families. Investigators hypothesize that an holistic, inclusive -taking account of the challenge of multi-morbidity and the long-term relationship that patients with COPD and their families have with the nurses along with the open structure of whatever kind of services is needed in each patient-family case, often in interdisciplinary and inter-institutional collaboration- , is beneficial as regards use of healthcare, health characteristics, HRQL, use of inhaler medications, sense of security in care and illness intrusiveness.

Detailed description: Growing number of people with chronic lung diseases, particularly chronic obstructive pulmonary disease (COPD), and the wide ranging burden that the disease induces to individuals, families and societies, has spurred concerted efforts to develop new healthcare for these people. Outpatient clinics are receiving increasing recognition, particularly those managed by nurses. An out-patient nursing clinic based on theoretical premises of partnership as practice has been established at Landspitali University Hospital. Initial research has shown effectiveness of the practice on the use of healthcare, health status, health related quality of life as well as increased capacity of families to live a meaningful life with the disease. There is a need to substantiate knowledge of the effectiveness of the partnership-based practice by focusing on use of healthcare resources, health and the experience of patients and families, as well as developing educational material for nurses.

Investigators hypothesize that the holistic, inclusive -taking account of the challenge of multi-morbidity and the long-term relationship that patients with COPD and their families have with the nurses along with the open structure of whatever kind of services is needed in each patient-family case, often in interdisciplinary and inter-institutional collaboration- , is beneficial as regards use of healthcare, health characteristics, HRQL, use of inhaler medications, sense of security in care and illness intrusiveness. The experience of patients with COPD and their families of living with the disease and receiving the care will substantiate the previously indicated variables. To this study a multi-dimensional approach is needed which includes both a holistic evaluation (qualitatively studying the experience of participants) and which measures variables prevalent in studies on self-management and palliative care (quantitative use of instruments and demographic variables).

Eligibility criteria: Inclusion Criteria:

* Clinical ICD 10 diagnosis of J40 to J44 and J96
* Currently receiving the partnership-based nursing care

Exclusion Criteria:

• Not speaking Icelandic

Primary outcomes:
measure: Health Related Quality of Life: St. Georges Respiratory Questionnaire 40 item
timeFrame: 18 months
measure: Hospital Admissions
timeFrame: 18 months
Secondary outcomes:
measure: Length of hospital stay
timeFrame: 18 months
measure: Hospital Anxiety and Depression Scale
timeFrame: 18 months
measure: Capacity to use inhalers
timeFrame: 18 months
Other outcomes:
measure: COPD Assessment Test (CAT)
timeFrame: 18 months
measure: Modified British Medical Research Council Dyspnea Scale (mMRC)
timeFrame: 18 months
measure: Illness Intrusiveness Rating Scale
timeFrame: 18 months
measure: Sense of Security in Care -Patients' Evaluation (SEC-P)
timeFrame: 18 months
Locations:
city: Reykjavík
country: Iceland
facility: Landspitali National University Hospital
state: Ísland
Study officials:
affiliation: Landspitali. National Hospital of Iceland
name: Helga Jónsdóttir
role: PRINCIPAL_INVESTIGATOR
References: