The Face of Complex Chronic Disease- Using Patient. Experience to Inform Policy and Practice. Kerry Kuluski, PhD. Research Scientist Bridgepoint Collaboratory for Research and Innovation,. Bridgepoint Health and Assistant Professor (status). Institute of Health Policy, Management and Evaluation,. Faculty of Medicine ...
CENTRE DE RECHERCHE DE ST.MARY PRÉSENTE ST. MARY’S RESEARCH CENTRE PRESENTS
Presentation of study results / Présentation des résultats de l'étude
The Face of Complex Chronic Disease- Using Patient Experience to Inform Policy and Practice Kerry Kuluski, PhD
Research Scientist Bridgepoint Collaboratory for Research and Innovation, Bridgepoint Health and Assistant Professor (status) Institute of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto §§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§§
DATE ET HEURE / DATE AND TIME
Le Jeudi 12 avril 12h à 13h Thursday April 12, 12:00pm to 1:00pm ENDROIT / LOCATION Locale / room (Pavillon Hayes- Annex)
3722 (Hayes Pavilion- annex)
Centre hospitalier de St. Mary / St. Mary’s Hospital Center
Un léger dîner sera servi / A light lunch will be served
Bienvenue à tous / Everyone is welcome
ABSTRACT A growing proportion of individuals are living longer with one or more chronic diseases that are increasingly characterized by functional, social, emotional, and/or heavy health service requirements. This combination of challenges manifests into what we refer to as complex chronic disease (CCD). Due to their complexity, these individuals are often excluded from research, leaving a poor understanding of their needs and experiences. This presentation shares the findings of a study which sought to understand the characteristics, needs and experiences of a hospital based CCD population across bio-psycho-social domains. One-on-one, semi-structured interviews were conducted with 116 hospital in-patients with a range of complex health problems using a self-designed survey tool. The interviews were followed by a chart review on the same patients. The quantitative data were analyzed using SAS version 9.2 using standard parametric tests. The qualitative data were analyzed using NVivo software using both guided content and thematic analysis. Findings revealed high variability among the study participants. All patients had multi-morbidities but the range of conditions and length of illness varied widely. Symptoms of physical pain, functional impairment and use of assistive devices were prevalent. Approximately half of the participants displayed significant depressive symptoms while a third revealed a history of life stress, anxiety and poor coping. Feelings of isolation and loneliness persisted despite frequent contact with family members and friends while in hospital. Most of the participants were heavy users of health services and noted difficulty in accessing services at some point during their disease trajectory. We conclude that the organization of health care needs to be better aligned with patient need. Individuals with CCD have needs that span physical, social and mental health domains. This requires a different response through better data collection, care planning and policies to meet the growing demand of this population.
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