A systematic review of dimensions evaluating patient experience in chronic illness

Over the past two decades, greater recognition of patients’ point of view has been facilitated by patient reported measures (PRMs) which are directly reported by the patient without interpretation of their responses by a clinician or anyone else [1]. Patient reported experience measures (PREMs) are a class of PRMs used to capture patient experience of health care or health service [2]. If increased attention has been paid to the measurement of “patient experience” as a quality indicator of patient care and safety for accreditation [3, 4], there has also been a rapid expansion in the use of the term “patient experience” in the area of clinical practice and research [3]. The need for a patient-centered approach has been recognized for assessment of the impact of disease and treatment in a patients life. Patient reported outcome measures (PROMs) is a broad family of measures consisting of a direct report by the patient of health outcomes associated with illness or treatment. PROMs include assessment of symptoms, functional status, health-related quality of life (HRQOL), satisfaction and adherence to medication, and various psychological, physical, social aspects [4‐6]. PREMs and PROMs are currently distinguished in the literature since the development and use of measures of patient reported experiences have often been carried out in isolation from work on patient reported outcomes [7]. In the field of chronic disease, patient experience often includes experience of chronic treatments, health practices and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life, inside and outside of care. The umbrella term “patient experience” for chronic diseases is somewhat confusing, and should therefore not be limited to patient healthcare experience as both PREMs and PROMs are of interest. Even if it appears that each class of PRMs overlap with the other, each one does not capture the whole complexity of chronic patient experience with chronic disease [7]. Therefore, chronic patient experience should simultaneously take into consideration PREMs, providing insight into the patient experience with their care or health services, and PROMs, pertaining to patient’s health, quality of life, or functional status associated with illness or treatment.

A fundamental consideration in the development of an instrument assessing PRM is the definition of the concept to be measured with domains that must be explored. As mentioned by the Cochrane Handbook for Systematic Reviews of Interventions: “Concepts may relate to an individual item or to a subset of items that refer to the same concept, often referred to as domains. For example, an item assessing difficulty walking up stairs would be a concept related to physical functioning and might be labelled walking up stairs or as part of physical function” [8]. So a domain could be seen as a concept component or a sub-part of a concept. A dimension is an item or a subset of items that explores a domain. For example, health-related quality of life is a multidimensional concept. This concept is traditionally composed of several domains including the social domain, which could be explored by different dimensions like “activities” or “family” dimensions. Currently, concepts and domains that should be explored to capture chronic patient experience remains to be identified. A first step in adequately conceptualizing chronic patient experience is to identify all essential core concepts and components that are currently measured with existing PRMs for chronic patients. This critical step could help researchers that would wish to evaluate full or partly patient experience of chronic disease. It can be valuable in different manners: draw a picture of concepts and domains related to patient experience in chronic illness, identification of lack of evaluation of some domains and development of new questionnaires filling this lack, and avoid development of new questionnaires if questionnaires assessing the same concepts already exist. The purpose of this review was to collect and explore patient reported measures (PROMs or PREMs) instruments, validated for a specific chronic disease or for any chronic patients, to produce an inventory of concepts explored inside these questionnaires, and to identify all categories of dimensions that allow capturing global chronic patient experience.

Following recommendations published by Moher and al. [9], a systematic review of PRM instruments validated for chronic patients was conducted from November 2016 to December 2016, on articles published until November 2016. No starting date has been specified to avoid missing some primary validation studies of questionnaires. It comprised three stages consisting of: 1) Search strategy: identification of articles by specifying inclusion and exclusion criteria, keywords and search strings in the databases, 2) Selection: article pre-selection by reading titles, followed by a selection by reading abstracts and full-text, 3) Extraction: extraction of data from articles, filling in a reading grid and providing a synthesis.

One hundred and seven primary PRM validation studies from 1980 to 2016 were selected. All selected instruments exploring patient experience of chronic disease or healthcare were gathered into five clusters: 1) Questionnaires exploring patients’ HRQOL or QOL; 2) Questionnaires focusing on symptoms and functional status; 3) Questionnaires assessing patient’s feelings and attitudes about illness; 4) Questionnaires assessing patients’ attitudes about treatments or healthcare; 5) Questionnaires related to patient’s experience of treatments or healthcare. After the classification of all dimensions, 12 categories were retained: the seven pre-defined categories (“physical”, “psychological”, “social”, “functional”, “effects of treatment”, “expectations and satisfaction with treatment”, and “experience of healthcare” dimensions) to which were added five new categories of dimensions (“illness perceptions”, “illness behaviors and coping”, “beliefs and adherence to treatment”, “patients’ knowledge”, and “involvement in health care” dimensions). To summarize, the twelve final categories of dimensions could be classified into three groups: the first one related to patient reported impact of illness on his/her life (with “functional”, “physical”, “psychological”, “social” dimensions); the second one more related to patient evaluation and satisfaction with treatment and healthcare (including “Experience of healthcare”, “Effects of treatment” and “expectations and satisfaction with treatment” dimensions); and a third one more related to patient’s adaptation to illness and treatment (with “illness perceptions”, “illness behaviors and coping”, “beliefs and adherence to treatment”, “involvement in health care” and “patients’ knowledge” dimensions). This representation seems to complete the Shale patient experience concept [123], outlining three main domains including: the illness experience (symptoms and illness consequences), customer service experience, and the lived experience of the illness (coping/dealing with the condition).

Inclusion of the “lived experience of the illness” seems to be an important issue to understand chronic patient experience. It has to be noted that in chronic illness, psychosocial adjustment to the disease might produce psychopathological responses resulting in mood disorders, anxiety, depression, and posttraumatic stress symptoms but can also lead to a positive adaptation phenomenon like increased ability to cope with tragedy, perceived benefits, personal growth, improved relationships [124]. In fact, if the negative aspects of changes can be assessed with the dimensions captured by this review, no concepts or dimensions focused on positive psychological change experienced by chronic patients and could be interesting to assess.

The majority of the selected questionnaires in the review were HRQOL instruments but the selected articles often used the terms HRQOL, QOL and health status interchangeably. If health is one of the important QOL domains, other important domains must be taken into account, and aspects of culture, values, and spirituality add to the complexity of QOL measurement [125]. Despite the increasing interest in QOL, consensus is lacking on its measurement, which could appear too broad to always be considered appropriate for the medical field. Furthermore, the terms QOL, HRQOL and health status were also often used interchangeably in the literature [126‐130], even if QOL and health status are two related, but distinct concepts [131]. Thus, the coexistence of different conceptualizations or designation of the same concept is a major problem because comparability between certain tools may come into question. An unclear conceptual match between a PRM instrument and an intended claim may result in problems with analysis and interpretation of study data [132].

It has to be noted that some questionnaires mixed subjective and more factual dimensions. For example, “Effects of treatment” (including treatment outcomes and side effects) and “expectations and satisfaction with treatment” dimensions were sometimes explored inside the same questionnaires. However, it is important to keep in mind that these two categories of dimensions don’t explore the same domains. So if these two kinds of dimensions are interesting to evaluate, they can’t be interpreted in the same way. Given the great variety of concepts and dimensions obtained in the review, the development of an instrument exploring all chronic patient experience domains appears inappropriate. It is therefore highly recommended for researchers to focus on specific domains they are interested in, to clearly define them before any instrument development and to not encompass them in broader concepts.

For reasons of comprehension, only articles written in English or French were retained during this review and for practical reasons only three databases were searched in this study. Whilst they were of course relevant, articles in other languages cannot be evaluated. The two most frequent languages in which relevant articles were excluded were German (61 questionnaires) and Spanish (12 questionnaires). Then, the search equation was built including the most well-known kinds of PRMs concepts in the medical literature and did not cover all PRMs concepts. These could contribute to a selection bias. Indeed, many selected questionnaires were QOL or HRQOL instruments. However, QOL and HRQOL are probably the oldest and most familiar PRM concepts studied in the literature (the PRO term only appeared in 1999 [133], while articles of the review were collected since 1980). Furthermore, a wide range of PRM was captured, used for a wide range of chronic patients and designed to explore many different concepts, even if some of them were not explicitly mentioned in the search equation (like patient activation concept for example). This diversity in captured questionnaires was rather reassuring and covered all concepts listed by the Cochrane Handbook for Systematic Reviews of Interventions mentioning that PROMs: “may include the signs and symptoms reported in diaries, the evaluation of sensations (most commonly classified as symptoms), reports of behaviors and abilities (most commonly classified as functional status), general perceptions or feelings of well-being, and other reports including satisfaction with treatment, general or health-related quality of life, and adherence to treatments. Reports may also include adverse or side effects” [1].

Within this study many choices were made and could be discussed. Indeed, some diseases or symptoms (e.g. syncope) could be classified into different medical specialties and many pathological clusters could be discussed. In the same way, if most HRQOL instruments have mainly focused on physical, psychological and social functioning, unfortunately, all these dimensions were not always clearly defined and easy to classify since many dimensions simultaneously explored several domains (like the “social and emotional” dimension [30] for example). As a consequence, many dimensions were classified inside different categories. “Illness perceptions” dimensions and “psychological” dimensions were also sometimes hard to distinguish. Indeed, “worry” or “concerns” dimensions could be considered as “psychological” dimensions. However, since they dealt more with patient subjective perception than with psychological health status, these dimensions were clustered into the patients’ “illness perceptions” category of dimensions.

PRM for psychiatric patients were not considered in this review because the assumption was made that the experience of patients with chronic psychiatric disorders might differ from other chronic patients. There has been extensive evidence published demonstrating the consistency of psychiatric patients’ reports about their inner feelings [134], psychiatric patient experience could be interesting to explore and could be the subject of future focused research.

Patient experience in chronic illness needs to be conceptually defined before it can be accurately measured. This review listed many concepts and dimensions that could be used to assess some aspects of chronic patient experience. A great diversity in PRMs exists for chronic patients and none of the reviewed and selected questionnaires covered all identified categories of dimensions. Categories of dimensions that were retained concerned both patient’s personal experience and attitude about illness, treatment or healthcare. It appears that the definition of concepts used varied widely among researchers and some concepts were often confusing as they are used interchangeably. These terms, similar to the many-facetted “patient experience” expression, should be well-defined before any instrument development or PRMs interpretation. Before attempting to measure the chronic patient experience, researchers should perhaps construct instruments relying on strong definition of concepts and dimensions encompassing a patient’s personal experience and attitude to illness, treatment or healthcare and possibly consider a patient’s positive adaptation to correctly measure changes in their experience of chronic disease.