A systematic review of dimensions evaluating patient experience in chronic illness

Abstract

Background: Living 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.

Methods: A 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.

Results: 107 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.

Conclusions: This 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.

Keywords: Chronic illness; Patient experience; Patient reported experience measures; Patient reported outcome measures; Patient-centered care; Systematic review.

Fig. 1

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram of the selection process. Not PRM instrument: Articles which don’t deal with a patient reported measure (PRM) (including studies with proxy instrument or questionnaire to assess family experience or healthy people point of view on illness); Not validation study: Studies using PRM without performing any validation (including comparisons of scale psychometric properties or scale systematic review articles); Not primary validation: Short or revised form of a PRM, transcultural adaptation or translation validation studies, scale revalidation on another sample or deepening of scale psychometric properties, and articles exclusively related to content and face validation; Not target patient: questionnaires to evaluate children or patient with acute or psychiatric disease; Language: Articles not published in English or French; Other: Unavailable articles or questionnaire’s dimensions not mentioned in full text

Fig. 2

Targeted population of the 107 selected questionnaires. Chronic disease: questionnaires intended for patients with various chronic diseases; Cardiovascular disease: chronic-venous-insufficiency, leg wound (with either venous or arterial ulcers), chronic-heart-failure, coronary-heart-disease, hypertension, atrial-fibrillation; Chronic pain: according to the questionnaires: patients with pain at different sites (headache or facial pain, musculoskeletal-pain, back or cervical pain, extremity pain, thoracic or abdominal pain, fibromyalgia…), specific or generalized, current continuous or intermittent; Hepato-gastro-enterology: gastro-esophageal reflux, irritable bowel syndrome, chronic-diverticular-disease, constipation, chronic-liver-disease, hepatic-encephalopathy; Pneumology: chronic respiratory disease, chronic obstructive pulmonary disease, asthma, chronic-cough; Neurology: vertigo, epilepsy, stroke, multiple-sclerosis, amyotrophic lateral sclerosis, progressive-neuromuscular-disease, spinal-cord-injury, Parkinson’s disease; Dermatology: chronic skin disorders, psoriasis, eczema, urticaria, ichthyoses, seborrheic dermatitis, lichen planus, chronic oral mucosal condition, recurrent aphthous stomatitis, vesiculobullous conditions (mucous membrane pemphigoid and pemphigus vulgaris), granulomatosis, recurrent genital herpes; Rheumatology/Orthopaedics: chronic-rheumatic-diseases, rheumatoid-arthritis, shoulder-problem, chronic-whiplash-associated-disorders; Nephrology/ Urology: chronic kidney diseases, hemodialysis, chronic-prostatis, intermittent-self-catheterization; Internal medicine: lupus, sarcoidosis, chronic-fatigue, syncope; Oncology: various kinds of cancers, chronic radiation patients; Hematology: sickle-cell-disease, chronic graft-versus-host disease; Infectious diseases: human immunodeficiency virus (HIV); Endocrinology: diabetes, thyroïd-eye-disease; Otorhinolaryngology: chronic otitis media, chronic-nasal-dysfunction; Ophtalmology: glaucoma

Fig. 3

Dimensions explored according to questionnaires targeted concepts: a HRQOL or QOL, b Functional status or symptoms, c Feelings and attitudes about illness, d Attitudes about treatments or healthcare, e Experience of treatments or healthcare. This figure represents each dimension category and its mapping to the concept(s) to visualize which categories of dimensions were the most explored according to questionnaires targeted concepts. For example, on (a), 86% of the selected HRQOL or QOL instruments explored a physical dimension, 69% explored a functional dimension, 76% explored a social dimension and 69% explored a psychological dimension. HRQOL: Health-Related Quality Of Life, QOL: Quality Of Life

Fig. 4

Questionnaires targeted concepts occurrence into the twelve final categories of dimensions Among the questionnaires covering Physical dimension, 25 were targeted HRQoL or QoL, 11 aimed to assess Functional status and Symptoms, 1 was targeted Patient’s feeling and attitudes about illness and 2 were targeted Patient’s feeling and attitudes about treatments or healthcare. HRQOL: Health-Related Quality Of Life, QOL: Quality Of Life