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

Abstract

Background

Gendered disparities in health care delivery and outcomes are an international problem. Patient-centred care (PCC) improves patient and health system outcomes, and is widely advocated to reduce inequities. The purpose of this study was to review published research for frameworks of patient-centred care for women (PCCW) that could serve as the basis for quality improvement.

Methods

A scoping review was conducted by searching MEDLINE, EMBASE, CINAHL, SCOPUS, Cochrane Library, and Joanna Briggs index for English-language quantitative or qualitative studies published from 2008 to 2018 that included at least 50% women aged 18 years or greater and employed or generated a PCCW framework. Findings were analyzed using a 6-domain PCC framework, and reported using summary statistics and narrative descriptions.

Results

A total of 9267 studies were identified, 6670 were unique, 6610 titles were excluded upon title/abstract screening, and 11 were deemed eligible from among 60 full-text articles reviewed. None were based on or generated a PCCW framework, included solely women, or analyzed or reported findings by gender. All studies explored or described PCC components through qualitative research or surveys. None of the studies addressed all 6 domains of an established PCC framework; however, additional PCC elements emerged in 9 of 11 studies including timely responses, flexible scheduling, and humanized management, meaning tailoring communication and treatment to individual needs and preferences. There were no differences in PCC domains between studies comprised primarily of women and other studies.

Conclusions

Given the paucity of research on PCCW, primary research is needed to generate knowledge about PCCW processes, facilitators, challenges, interventions and impacts, which may give rise to a PCCW framework that could be used to plan, deliver, evaluate and improve PCCW.

Background

Inequities in access to and quality of health care are pervasive, leading to disparities in health outcomes. While there are multiple causal factors, one of the key issues is gender bias [1].

For example, research on access to care for cardiovascular disease revealed that women were far less likely to be referred for diagnostic tests and to cardiac rehabilitation compared with men [2], and even when referred, they were less likely to receive recommended treatment compared with men [3]. Similarly, another study of patients with acute myocardial infarction revealed that women received guideline-recommended interventions such as timely reperfusion, antiplatelet therapy, statins, and cardiac rehabilitation less often than men [4]. Such disparities in the quality of care for women may be heightened by race or ethnicity in both high- and low-resource countries, and by a lack of primary research including women participants [5, 6].

In 1995, the Fourth World Conference on Women of the United Nations highlighted the need to deliver health care services that are sensitive to the needs and preferences of women [2], and in 2009 the World Health Organization report, Women and Health, emphasized the need to improve the quality of women’s health care services [7]. Over time, the concept of women’s health has broadened from a focus on sexual and reproductive health to a life-course approach that considers other health challenges that affect women during and beyond their reproductive years, and the impact of social determinants on women’s health, morbidity and mortality [8]. As a result of ongoing gender bias that influences women’s health care and outcomes, one of the 17 goals in the United Nations report, Gender Equality in the 2030 Agenda for Sustainable Development, is to promote women’s health and well-being by ensuring that women have universal access to comprehensive health care that is responsive to gender and the life course [9].

Patient-centred care (PCC) is an approach that tailors care to individual needs, preferences and circumstances by informing, engaging, and empowering patients (including families or care partners) [10]. PCC is considered a key element of high quality health care because it has been associated with patient (knowledge, relationship with providers, service experience and satisfaction, treatment compliance, health outcomes) and health system (cost-effective service delivery) outcomes [11,12,13]. Accumulating research offers insight on the dimensions of PCC, but reveals discrepancies in what is thought to constitute PCC. A scoping review of 19 studies published from 1994 to 2011 identified 25 unique frameworks or models of PCC; common domains pertained to the patient-provider relationship (sharing information, empathy, empowerment), partnership (sensitivity to needs, relationship-building), and health promotion (collaboration, case management, resource use) [14]. A systematic review of 26 studies published from 1992 to 2008 identified 13 unique instruments to assess PCC, further underscoring variability in how PCC is conceptualized [15].

Unfortunately many patients do not receive PCC, particularly those with limited education, poor health, or whose culture differs from their health care provider. A national survey in the United States showed that, among 2718 responding adults aged 40 years or greater with 10 common medical conditions, there was considerable variation in whether patients were told they had a choice of treatment and whether they were asked for input in the decision [16]. In a study of 509 adult patients seen by family physicians or general internists, PCC was observed more in for healthier, more educated patients [17]. A survey of 80 providers and 27 Muslim women found that both groups identified similar barriers to PCC: providers lacked understanding of patients’ religious and cultural beliefs, and needs for modesty, and patients lacked understanding of disease processes and mistrusted the health care system [18].

Delivering patient-centred care for women (PCCW) may serve as an important means of reducing gendered disparities. However, it is unclear whether existing PCC frameworks or models are relevant to women’s health, or if the components, delivery and experience of PCCW varies among women with different health conditions or personal characteristics. Greater understanding is needed of what constitutes PCCW to support system-level planning of services for women, and to inform the development of interventions targeted to women and their care providers that support PCCW. While others have reviewed published research on frameworks or models of PCC [14], no one has synthesized knowledge about PCCW frameworks or models. The purpose of this study was to review published research, and identify and compare existing PCCW frameworks or models. If PCCW frameworks or models are available, they could serve as the basis for evaluating and improving care delivery and outcomes among women. If lacking, then primary research is needed to explore the elements of PCC valued by women to inform the development of a comprehensive PCCW framework.

Methods

Approach

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.

Scoping

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.

Searching

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.

Screening

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.

Data extraction

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.

Data analysis

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.

Results

Search results

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.

Figure 1

PRISMA diagram

Table 2 PCC domains measured or revealed in included studies

Study characteristics

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, 34,35,36].

PCCW framework

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.

PCC definition or measurement

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.

PCC domains

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 [26,27,28, 30,31,32,33, 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 [26,27,28,29, 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, 34,35,36] and other studies.

Table 1 Data extracted from included studies

Additional PCC elements

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, 34,35,36] and other studies.

Discussion

PCCW may attenuate the widespread gendered disparities in health care delivery and outcomes. However, this review revealed that there are no established frameworks of PCCW. Studies varied in how they described PCC, with little direct consideration of women’s unique needs and preferences because none of the studies included solely women, or analyzed or reported findings by gender. Moreover, none of the studies addressed all 6 domains of an established PCC framework, identifying specific gaps in how PCCW has been conceptualized or operationalized [25]. However, additional PCC elements emerged in 9 of 11 studies including timely responses, flexible scheduling, and humanized or individualized management.

These findings are novel because no prior work had conceptualized PCC specifically for women. While numerous frameworks for PCC are available, comparison of domains across those frameworks demonstrated variability [14, 15, 25]. Our study also showed that, while some PCC components in included studies matched those of the McCormack et al. framework [25], additional PCC elements emerged. Given that the McCormack et al. framework was developed for cancer patients [25], the variability in PCC domains across frameworks underscores that some PCC elements may be common to all patients, while others may be unique to specific conditions. This is consistent with the fact that PCC is meant to accommodate individual needs and preferences [10], which in part must be influenced by conditions or health care issues, and in part by individual characteristics. It stands to reason then that at least some aspects of PCC may be specific to women, although that was not evident in the included studies because there were no differences in PCC domains between studies comprised primarily of women [31, 34,35,36] and other studies. Experts agree that there may not be a global definition of PCC [37]. However, our findings underscore the paucity of research on PCCW.

Strengths of this study include the use of rigorous methods [20] including a comprehensive search of multiple databases, independent screening and data extraction, compliance with standards for the reporting of review [21] and for searching of electronic databases [22], and use of a PCC framework upon which to map PCC elements from included studies [25]. Several factors may limit the interpretation and application of the findings. Despite having conducted a comprehensive search of multiple databases we may not have identified all relevant studies, in part because our search was restricted to English-language studies and studies that used the label of patient- or person-centred (or centered) care. We did not search the grey literature given the methodological challenges that have been identified by others [23, 24]; as a result, important information may have been missed. Few studies were eligible and none included solely women, so the findings may not truly represent the views of women about PCC. Risk of bias of included studies was not assessed as this is not customary for a scoping review [20]. Although scoping reviews often include consultation with stakeholders to interpret the findings, this step was not done because studies were few and provided sparse details [20]. Our analysis relied on the McCormack et al. PCC framework [25], which may not be a universally recognized or accepted framework. Still, as a comprehensive PCC framework, it served as a basis from which to assess whether and how PCCW has been studied, evaluated or improved.

The purpose of this study was to identify and compare existing PCCW frameworks. Strikingly, despite research demonstrating disparities in care among women [1,2,3,4,5,6], and global advocacy for research to improve quality of care for women [7,8,9], no research has conceptualized PCCW. Hence, there is little guidance on what constitutes PCCW or how to evaluate and improve PCCW. Given the aging and ethnic diversity of the female population, rise in labour force participation, shift to marriage and childbearing later in life, increase in single parent households largely headed by women, women’s simultaneous roles as paid workers and caregivers, and gaps in earnings for women compared with men, the socio-economic implications of poor health care for women are profound [38]. Given these socio-economic implications, consideration of PCCW is urgently needed. To better address PCCW, and in so doing alleviate or mitigate the socio-economic factors that contribute to gendered inequities in health care quality, advocates in Canada and the United States have issued recommendations for health care reform that include a focus on women’s health; comprehensive, integrated programs and services meeting women’s unique needs across the lifespan; better provider training about women’s unique health needs and the differential effects of particular problems; vigorous public health leadership to shape the women’s health agenda, recognizing the social and economic context of their lives; consideration of gender and health in all government policies; developing and implementing guidelines that include specific evidence-based gender elements; and sharing information with women directly [38, 39].

This review revealed several pressing areas where future research is needed. Primary research is needed to explore the elements of PCC valued by women including across different conditions. More needs to be understood about the challenges faced by women and health care professionals in achieving PCC. Finally, research is needed to examine whether and how policies, guidelines and interventions could better promote and support PCCW so that more women receive it. In addition to primary research, much could be learned from published investigations of women’s health care preferences and experiences in various contexts. For example, research has explored patient-centred outcomes desired by women exposed to sexual trauma or intimate partner violence [40], and what is considered by women to be patient-centred maternity care [41].

Conclusions

Despite international calls for strategies to reduce gendered disparities in health care delivery and outcomes, this scoping review identified no studies that employed or developed a PCCW framework, and no studies that involved solely women in exploring how to achieve PCCW. Thus primary research is needed to generate knowledge about PCCW models, processes, facilitators, challenges, interventions and impacts.