How is patient-centred care conceptualized in women’s health: a scoping review

For this study, a scoping review was chosen as the methodologic approach. A scoping review aims to rapidly map the key concepts in published research on a given topic [19]. Unlike a systematic review, which aims to provide answers to a well-defined research question, a scoping review addresses broader topics, includes research of various designs, describes the extent, range and nature of research, and identifies gaps in the existing literature [20]. A scoping review consists of five steps: scoping, searching, screening, data extraction, and data analysis. Reporting of the methods and findings was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) criteria [21]. Data for this review were publicly available so institutional review board approval was not necessary. A protocol was not registered for this review.

To become familiar with this topic, a quick scan of relevant literature was undertaken by searching MEDLINE using the Medical Subject Headings: women’s health and patient-centered care. The titles and abstracts of the initial search results were screened by KB and ARG, and discussed by the research team to collectively establish eligibility criteria based on the Population, Issue, Comparisons, Outcomes (PICO) framework, which then informed the comprehensive search strategy. Given the preliminary nature of a scoping review, the research team decided to focus on general PCCW frameworks pertaining to women with any health care concern or condition, and to investigate disease-specific PCCW frameworks in a separate review (reported separately).

Population referred to women, family members or care partners aged 18 years or greater with any health care concern or condition, or clinicians (i.e. physicians, nurses) involved in the care of those women in any type of health care setting. Issues referred to the identification or development of PCCW frameworks in which PCC was explicitly labelled in the published manuscript as patient-, person-, woman-, women-, client- or family-centered/centred care. Although there is no standardized definition of PCC, PCC can be thought of as the individualized, timely, coordinated, respectful, and compassionate care of patients that engages women and takes into consideration their values, preferences, information and supportive care needs, such that they have the ability to make clinical decisions and manage their own health [10]. With respect to comparisons, qualitative (interviews, focus groups, qualitative case studies), quantitative (questionnaires, randomized controlled trials, time series, before/after studies, prospective or retrospective cohort studies, case control studies) or mixed methods studies were eligible if they explored and/or compared patient or clinician views about PCCW, experiences with PCCW including enablers or barriers, or suggestions for improving PCCW, or evaluated the impact of strategies implemented to support or improve PCCW. Such studies could evaluate PCCW in patients and/or clinicians with and without exposure to interventions, before and after exposure, or across different interventions. The primary outcome of interest was a PCCW framework (or model, theory, etc.), either employed by study, or compiled or developed by the study based on data collected in any of the aforementioned ways that may have included one or more of, but was not limited to PCCW constructs, processes, determinants (enablers, barriers), or outcomes.

Studies were considered ineligible if they primarily involved trainees (i.e. medical students or residents) or allied health care professionals (i.e. dentists, physiotherapists); concluded that PCC is needed without having studied PCC; labelled any form of clinical care or multi−/inter-disciplinary care for patients as PCC; investigated patient engagement in organizational- or system-level health service planning; examined the illness experience of patients rather than the care experience; focused on care delivered by peers or lay persons; or studied the patient-centered medical home, health-related quality of life, electronic applications for patients, or patient preferences for treatment or clinical outcomes. Publications in the form of protocols, editorials, commentaries, letters, or meeting abstracts or proceedings were excluded. Systematic reviews were also excluded although references were searched for eligible primary studies.

A comprehensive literature search was conducted on February 26, 2018 in MEDLINE, EMBASE, SCOPUS and CINAHL by ARG based on a search strategy that was devised by a medical librarian and complied with the Peer Review of Electronic Search Strategies checklist (Additional File 1) [22]. The search was purposefully broad, including concepts for women’s health combined with explicit mention of PCC-related terms; by choosing to screen a large number of search results, we hoped to capture studies that generated frameworks that might otherwise be missed. The search was limited to research published in English language from 2008 to that date, a 10-year time span during which research on PCC became prevalent. We chose not to search the grey literature given the methodological challenges that have been identified by others such as sensitivity versus specificity, replicability, risk of bias, and intensity of time and effort [23, 24]. Search results were exported into Excel, in which screening and data extraction were performed.

As a pilot test, KB, HL and ARG independently screened 50 records, and then compared and discussed findings to establish a shared understanding of how to interpret and apply eligibility criteria. Then titles and abstracts were screened independently by KB and HL. All articles considered potentially eligible by at least one reviewer were retrieved for full-text screening, which was undertaken concurrent with data extraction. During screening it became apparent that few studies focused on women only, so it was decided to include studies if at least half of the participants were women or outcomes were analyzed by gender.

A data extraction table was developed to collect information on author, publication year, country, research design (including methods of data collection, number of participants, age range, proportion of female participants), study objective, term used to refer to PCC, definition or description of PCC employed or generated, and related findings. HL extracted data, which were independently checked by ARG.

Summary statistics were used to report the number of studies published per year, country, research design, and term used for PCC. Definitions or descriptions of PCCW across all studies were reported textually. To further analyze and compare PCCW across studies, PCC elements employed or generated in each study were mapped to the McCormack et al. PCC framework, and the number of domains addressed in each study was summarized [25]. The McCormack et al. framework was chosen from among other PCC frameworks we identified in the literature because it was rigorously developed, extends beyond the clinical encounter, and is more comprehensive than other frameworks [14]. It was established by systematically reviewing literature and relevant theories, observing 38 medical encounters between cancer patients and oncologists, interviewing those 38 patients, and then reviewing the proposed domains with a 13-member expert panel to refine the framework. The resulting PCC framework consists of 31 sub-domains within six domains: fostering clinician-patient relationships, exchanging information, recognizing and responding to patient emotions, managing uncertainty, making decisions, and enabling patient self-management.

A total of 9267 studies were identified, of which 6670 were unique, and 6610 titles were excluded, leaving 60 full-text articles to be screened. Of these, 48 articles were excluded: 28 did not study PCCW, 13 were not an eligible publication type, and 8 did not report the number of women participants or less than half were women. A total of 11 studies were eligible for review (Fig. 1). Data extracted from these studies are shown in Table 1.

Studies were published from 2008 to 2017 inclusive in both higher- and lower-resource countries with differing health care systems including the United States (n = 3), Australia (n = 2) and one each in Canada, Hungary, Iran, Mexico, Netherlands and Scotland. PCC was studied for critical and intensive care, chronic conditions, older people, ear, nose and throat care, primary care, surgical inpatients, and complementary and alternative medicine. In terms of research design, the majority of studies employed qualitative interviews or focus groups (8, 72.7%), while 3 studies involved surveys (27.2%). The majority of studies used the term patient-centered or -centred or -centeredness (10, 90.9%). No studies included solely women, and no studies analyzed or reported findings by gender. At least 80.0% of participants were women in 4 of the 11 studies [31, 34‐36].

None of the 11 studies was based upon, or generated a framework, model, theory or approach specific to PCCW. Instead they sought to identify and describe the components of PCC.

Of the 11 included studies, 3 (27.3%) did not a priori define PCC. Among the 8 (72.7%) studies that defined PCC, 2 (25.0%) studies referred to it as accommodating user views in the design or evaluation of health services (system level), and 6 (75.0%) studies referred to it as valuing people as individuals, respecting their needs and values, and addressing those preferences in clinical decisions (patient level). One study asked patients what PCC meant to them and despite being unfamiliar with the word patient-centred, they were able to articulate that it meant they were involved in their care, attended to, and connected with their clinician [34]. All 11 studies described how PCC was measured; among the qualitative studies, participants were asked about their experiences of care and what they valued about their clinician, environment and information received. Quantitative studies asked participants about attributes of PCC including respect for patient values, engagement, quality of communication and relationship with care providers.

Table 2 summarizes the mapping of PCC concepts in included studies to McCormack’s PCC framework [25]. None of the studies addressed all 6 domains. Although one study addressed 4 of 6 domains and two studies addressed 3 of 6 domains. The domains most frequently addressed by the 11 studies were exchanging information (n = 8), fostering a patient-clinician relationship (n = 7) and making decisions (n = 5). With respect to exchanging information, patients wanted clinicians to ask about their life circumstances and personal values, listen and acknowledge needs or concerns, accommodate questions, detail next steps or follow-up care, provide information about treatment options, and justify treatment prescribed when counter to patient preference [26‐28, 30‐33, 36]. Regarding fostering a patient-clinician relationship, patients wanted clinicians to be respectful, advocate for them, get to know them, share information about themselves, engage family members, express empathy, not rush them, and allow them to maintain dignity [26, 28, 29, 31, 33, 34]. Regarding decision-making, patients wanted to be sufficiently informed such that they and family members could be involved in decisions, which they said enhance satisfaction, respect, dignity [26‐29, 34]. Domains least addressed among the 11 studies were responding to patient emotions (n = 1), enabling patient self-management (n = 1) and managing uncertainty (n = 0). Patients said that clinicians should offer more attention to emotional and psychological needs [32], and they appreciated autonomy when clinicians outlined self-care activities [26]. There were no differences in PCC domains between studies comprised primarily of women [31, 34‐36] and other studies.

Although studies did not consistently address PCC domains according to the McCormack et al. framework, other elements relevant to PCC were addressed in nine (81.8%) of 11 studies (Table 1). For example, timely responses to patient requests helped to gain trust and security and continuation and coordination of care following treatment helped patients to feel cared for. Flexibility of scheduling allowed patients to plan their life around care and inflexibility of scheduling and limited appointment times led to patients feeling devalued. Several studies identified the theme of humanization, meaning feeling seen and heard as a person and receiving individualized communication and treatment that fits their personal needs. There were no differences in additional PCC elements between studies comprised primarily of women [31, 34‐36] and other studies.