Primary care is changing from mono practice to multi-professional clinics with the support of public authorities. Multi-professionnal clinics are the rule rather than the exception. In the context of an aging population, where the prevalence of multi-morbidity is growing (1), disease centered care had to give way to patient-centered care. Multi-professional clinics should help meet this new demand for primary care (2). The application of new primary health care models, such as the Chronic care model (3) or the Patient-centered medical home (4,5), appears to be the favored option.
Today, evaluation of multi-professional structures focuses on their economic impact. Public authorities concluded that, beyond productivity, quality of care and patient satisfaction remain to be assessed (6). Accordingly, quality of care became a priority issue for public health authorities and the World Health Organization (WHO) (7).
The WHO defines quality of care as “the extent to which health care services provided to individuals and patient populations improve desired health outcomes. In order to achieve this, health care must be safe, effective, timely, efficient, equitable and people-centered”. In 1980, Donabedian (1919–2000) was already affirming the need for patient-centered care (8). He distinguished three facets from the patient’s perspective needed in order to give the patient a full role in ensuring the quality of health care. First, by defining what quality is, second, by evaluating quality, third, by providing information that permits others to evaluate it (9). More recently, the Institute Of Medicine (IOM) established patient-centered care as a requirement of modern medicine (10).
Information about quality of care could be classified under three categories (8): “structure”, “process”, and “outcome”. Structure denotes the attributes of the settings in which care occurs. This includes the attributes of material resources (such as facilities, equipment, and money), of human resources (such as the number of personnel and their qualifications), and of organizational structure (such as medical staff organization and methods for peer reviewing). Process denotes what is actually done in giving and receiving care. It includes the patient’s activities in seeking care and obtaining it, as well as the practitioner’s activities in making a diagnosis and recommending or implementing treatment. Outcome denotes the effects of care on the health status of patients. Improvements in the patient’s knowledge and salutary changes in the patient’s behaviour are included under a broad definition of health status, as is the degree of the patient’s satisfaction with the care provided.
The IOM conducted consultations with professionals and patients (10) highlighting nine domains of care as priorities and requiring assessment by patients:
Respect for patients’ values, preferences, and expressed needs: This is a major concern of patient-centered care. Some patients wish to avoid risk; others may choose a risky intervention despite a relatively low likelihood of benefit. Patients’ preferences are likely to change over time and to depend on the clinical problems in question. Therefore, the enterprise of shared decision making is a dynamic one, changing as patients and circumstances change.
Coordination and integration of care: Many patients depend on those who provide care to coordinate services to ensure that accurate and timely information reaches those who need it at the appropriate time. Patient-centered care addresses the need to manage smooth transitions from one setting to another or from a health-care to a self-care setting.
Information, communication, and education: With respect to their health, people want to know what is wrong (diagnosis) or how to stay well, what is likely to happen and how it will affect them (prognosis) and how manage this. Patients are diverse in the way they prefer to interact with caregivers: some seek on-going, personal, face-to-face relationships; others prefer to interact only when unavoidable. Common to all interactions is the desire for trustworthy information that is attentive, responsive, and tailored to an individual’s needs.
Physical comfort: Patients experience pain, shortness of breath, or some other discomfort. They need not undergo such suffering, especially at the end of life. Many patients fail to receive state-of-the-art pain relief or respiratory management. Attention to physical comfort implies timely, tailored, and expert management of such symptoms.
Emotional support - relieving fear and anxiety: Suffering is more than just physical pain and other distressing symptoms; it also encompasses significant emotional and spiritual dimensions. Patient-centered care stresses that special attention is paid to anxiety due to uncertainty, fear of pain, disability, loneliness and social impact.
Involvement of family and friends: This dimension of patient-centered care focuses on accommodating family and friends on whom patients may rely, involving them, as appropriate, in decision making, supporting them as caregivers, making them welcome and comfortable in care and recognizing their needs and contributions.
Timeliness: Timeliness is an important characteristic of any service and is a legitimate and valued focus of improvement in health care. However, long waits are the rule rather than the exception. In addition to emotional distress, physical harm may result, for example, from a delay in diagnosis or treatment that results in preventable complications.
Efficiency: In an efficient health care system, resources are used to get the best value for money. It is also true for most improvements in safety, which result in fewer injuries, continually reduce the burden of illness, injury, and disability, and improve the health and functioning of the people
Equity/accessibility: The aim of equity is to secure the benefits for all patients. Equity in care implies universal access.
In the face of growing interest in patients’ perceptions of their care, many researchers are interested in patient satisfaction and experience. Satisfaction is the patient’s appreciation of the care received (9). Satisfaction surveys show an optimistic and limited picture of care (11). They do not really assess what has to be improved (12). Faced with this, researchers became more interested in the patient’s experience (13).
Patient Reported Outcomes Measures (PROMs) are tools used to measure patient-reported outcomes (14). PROMs are standardized, validated questionnaires that are completed by patients during the perioperative period to ascertain perceptions of their health status, perceived level of impairment, disability, and health-related quality of life. They allow the efficacy of a clinical intervention to be measured from the patients’ perspective. Questionnaires are given to patients both pre- and post-operatively to allow comparison of outcomes pre- and post-procedure. In addition to outcomes relating to interventions, PROMs measure patients’ perceptions of their general health or their health in relation to a specific disease. PROMs are a means of measuring clinical effectiveness and safety.
In parallel, Patient Reported Experience Measures (PREMs) gather information on patients’ views of their experience whilst receiving care (14). They are an indicator of the quality of patient care, although do not measure it directly. PREMs are most commonly in the form of questionnaires. In contrast to PROMs, PREMs do not look at the outcomes of care but the impact of the process of the care on the patient’s experience e.g. communication and timeliness of assistance. They differ from satisfaction surveys by reporting objective patient experiences, removing the ability to report subjective views.
In the context of multi-morbidity, the two measures are intertwined, and the distinction has little significance (14).
The USA were the first to conduct a standardized national survey of patient care assessment: The Hospital Consumer Assessment of Health Care Providers and Systems (HCAHPS) (15). In the UK, the UK government launched a survey of primary care patients in 2006 (16). The National Health Service (UK) is now encouraging local surveys in consultation with patients, in addition to national surveys (17). Canada (18), is also experimenting with patient surveys. No data exists in France in the context of primary care.
Measuring patient perception of their experience of primary care, in its fully multidimensional sense, requires a robust instrument of measurement. Reviews have shown that many instruments have been developed over time (19,20). These existing reviews have not systematically appraised the measurement properties of the instruments found. Therefore, a systematic review was needed to identify the instruments which measured quality of primary care from the patient’s perspective and also evaluated the measurement properties of these instruments.