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An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: the research protocol of the Home Sweet Home study
  1. Nienke Nakken1,
  2. Daisy J A Janssen1,2,
  3. Esther H A van den Bogaart1,
  4. Jan H Vercoulen3,
  5. Emiel F M Wouters1,4,
  6. Martijn A Spruit1
  1. 1Department of Research and Education, CIRO+, Centre of Expertise for Chronic Organ Failure, Horn, The Netherlands
  2. 2Centre of expertise for palliative care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands
  3. 3Department of Medical Psychology and Department of Pulmonary Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
  4. 4Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands
  1. Correspondence to Nienke Nakken; nienkenakken{at}ciro-horn.nl

Abstract

Introduction 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 and analysis 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.

Ethics and dissemination 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).

  • Chronic Obstructive Pulmonary Disease
  • Home environment
  • Resident loved one
  • Family caregiver
  • Activities of Daily Living
  • Quality of Life

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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