An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: the research protocol of the Home Sweet Home study.
BACKGROUND
Chronic obstructive pulmonary disease (COPD) represents an important public health challenge. Patients are confronted with limitations during activities of daily living (ADLs). Resident loved ones of patients with COPD may be uniquely positioned to witness these limitations. COPD may have an impact on not only the patients' life, but also on the lives of the resident loved ones. Furthermore, COPD exacerbation-related hospital admissions often occur in patients with COPD. However, whether and to what extent these admissions influence resident loved ones' burden and health status remains currently unknown. Therefore, the primary objectives of this study are to investigate the differences between patients with COPD and resident loved ones' perceptions of patients' health status and problematic ADLs and to study prospectively the effects of a COPD exacerbation on resident loved ones' perceptions of patients' health status and problematic ADLs.


METHODS
An observational, longitudinal study will be performed in 192 patients with COPD and their 192 resident loved ones. Primary outcomes are daily functioning, ADL, disease-specific health status, generic health status and dyspnoea. These will be assessed during home visits at baseline and after 12 months. Additional home visits will be performed when a COPD exacerbation-related hospital admission occurs during the 12-month follow-up period.


BACKGROUND
This protocol was approved by the Medical Ethics Committee of the Catharina Hospital Eindhoven, the Netherlands (NL42721.060.12/M12-1280) and is registered in the Dutch Trial Register (NTR3941).
Department of Research and Education, CIRO+, Centre of Expertise for Chronic Organ Failure, Horn, The Netherlands.
Nienke
http://orcid.org/0000-0001-5019-1157
N
Nakken
Department of Research and Education, CIRO+, Centre of Expertise for Chronic Organ Failure, Horn, The Netherlands Centre of expertise for palliative care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
Daisy J A
DJ
Janssen
Department of Research and Education, CIRO+, Centre of Expertise for Chronic Organ Failure, Horn, The Netherlands.
Esther H A
EH
van den Bogaart
Department of Medical Psychology and Department of Pulmonary Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.
Jan H
JH
Vercoulen
Department of Research and Education, CIRO+, Centre of Expertise for Chronic Organ Failure, Horn, The Netherlands Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
Emiel F M
EF
Wouters
Department of Research and Education, CIRO+, Centre of Expertise for Chronic Organ Failure, Horn, The Netherlands.
Martijn A
MA
Spruit
D000203:Activities of Daily Living; D001294:Attitude to Health; D005190:Family; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D011446:Prospective Studies; D029424:Pulmonary Disease, Chronic Obstructive / Q000175:diagnosis; D012107:Research Design
Activities of Daily Living; Chronic Obstructive Pulmonary Disease; Family caregiver; Home environment; Quality of Life; Resident loved one