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A systematic review of dimensions evaluating patient experience in chronic illness

  • Forestier, Bastien1, 2
  • Anthoine, Emmanuelle1, 2
  • Reguiai, Ziad3
  • Fohrer, Cécile4
  • Blanchin, Myriam1
  • 1 Université de Nantes, Université de Tours, INSERM, UMR U1246 SPHERE “methodS in Patient centered outcomes & HEalth REsearch”, Nantes, France , Nantes (France)
  • 2 Pôle de santé publique, CHU de Nantes, Nantes, France , Nantes (France)
  • 3 Service de dermatologie, Polyclinique Courlancy, Reims, France , Reims (France)
  • 4 Service d’hématologie clinique, CHU de Strasbourg, Strasbourg, France , Strasbourg (France)
Published Article
Health and Quality of Life Outcomes
Springer (Biomed Central Ltd.)
Publication Date
Jan 21, 2019
DOI: 10.1186/s12955-019-1084-2
Springer Nature


BackgroundLiving with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient’s life. The purpose of this review was to collect and review different kinds of available PRM instruments validated for chronic patients, to produce an inventory of explored concepts in these questionnaires and to identify and classify all dimensions assessing chronic patients experience.MethodsA systematic review of PRM instruments validated for chronic patients was conducted from three databases (Medline, the Cochrane library, and Psycinfo). Articles were selected after a double reading and questionnaires were classified according to their targeted concept. Then, all dimensions of the questionnaires were clustered into different categories.Results107 primary validation studies of PRM questionnaires were selected. Five kinds of instruments were recorded: 1) Questionnaires assessing health related quality of life or quality of life; 2) Instruments focusing on symptoms and functional status; 3) Instruments exploring patients’ feelings and attitude about illness; 4) Questionnaires related to patients’ experience of treatment or healthcare; 5) Instruments assessing patients attitudes about treatment or healthcare. Twelve categories of dimensions were obtained from these instruments.ConclusionsThis review provided an overview of some of the dimensions used to explore chronic patient experience. A large PRM diversity exists and none of the reviewed and selected questionnaires covered all identified categories of dimensions of patient experience of chronic disease. Furthermore, the definition of explored concepts varies widely among researchers and complex concepts often lack a clear definition in the reviewed articles. Before attempting to measure chronic patient experience, researchers should construct appropriate instruments focusing on well-defined concepts and dimensions encompassing patient’s personal experience, attitude and adaptation to illness, treatment or healthcare.

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