Health, economic, psychological and social impact of educating carers of patients with advanced pulmonary disease (protocol)

Ruth Sladek, Tina Jones, Paddy Phillips, Mary Luszcz, Debra Rowett, Simon Eckermann, Richard Woodman, Peter Frith

    Research output: Contribution to journalArticlepeer-review

    3 Citations (Scopus)

    Abstract

    People with advanced pulmonary disease (APD), such as those with chronic obstructive pulmonary disease, have markedly impaired quality of life. Home Oxygen Therapy (HOT) itself is burdensome, although it often improves survival duration and quality of life in these patients. The exact burdens on informal caregivers of these patients are unknown. The central purpose of the pragmatic randomized controlled study described in this protocol is to determine the effectiveness of improving the skills and knowledge of carers of patients with APD who use HOT. Specifically we aimed to estimate the incremental impact of this carer intervention above usual care on health, economic, psychological and social domains for patient and carer dyads relative to the level of current burden. Eligible patients and their carers were recruited through three major hospitals, and randomized to an intervention or control group. The carers in the intervention group received two home-delivered education sessions based on the principles of academic detailing. Participants are currently being followed over 12 months. The primary outcome will be the proportion of patients surviving without a chronic obstructive pulmonary disease-related readmission / residential (non respite) care over 12 months. Carer secondary outcomes include perceived caregiver burden, level of expected and received social support, perceived level of mastery, self esteem, health related quality of life and disability, and ability to conduct domestic chores and household maintenance, social activities and provide service to others, and fatigue. Secondary patient outcomes include health related quality of life and disability, and current respiratory health status.

    Original languageEnglish
    Pages (from-to)717-723
    Number of pages7
    JournalContemporary Clinical Trials
    Volume32
    Issue number5
    DOIs
    Publication statusPublished - Sep 2011

    Keywords

    • Academic detailing
    • Advanced pulmonary disease
    • Cost effectiveness study
    • Healthcare utilization
    • Home oxygen therapy
    • Informal caregiving
    • Quality of life
    • Randomized controlled trial

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