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RESEARCH ARTICLE Open Access How is patient-centred care conceptualized in womens health: a scoping review Anna R. Gagliardi 1* , Bryanna B. Nyhof 2 , Sheila Dunn 3 , Sherry L. Grace 4 , Courtney Green 5 , Donna E. Stewart 2 and Frances C. Wright 6 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. Keywords: Womens health, Patient-centred care, Equity, Quality, Frameworks, Models, Scoping review Background Inequities in access to and quality of health care are per- vasive, 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 cardiovas- cular disease revealed that women were far less likely to be referred for diagnostic tests and to cardiac rehabilita- tion compared with men [2], and even when referred, they were less likely to receive recommended treatment compared with men [3]. Similarly, another study of pa- tients 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 in- cluding 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 Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. * Correspondence: [email protected] 1 Toronto General Hospital Research Institute, University Health Network, 200 Elizabeth Street, 13 EN-228, Toronto, ON M5G2C4, Canada Full list of author information is available at the end of the article Gagliardi et al. BMC Women's Health (2019) 19:156 https://doi.org/10.1186/s12905-019-0852-9

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RESEARCH ARTICLE Open Access

How is patient-centred care conceptualizedin women’s health: a scoping reviewAnna R. Gagliardi1* , Bryanna B. Nyhof2, Sheila Dunn3, Sherry L. Grace4, Courtney Green5, Donna E. Stewart2 andFrances C. Wright6

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 thatincluded at least 50% women aged 18 years or greater and employed or generated a PCCW framework. Findingswere 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/abstractscreening, and 11 were deemed eligible from among 60 full-text articles reviewed. None were based on orgenerated a PCCW framework, included solely women, or analyzed or reported findings by gender. All studiesexplored or described PCC components through qualitative research or surveys. None of the studies addressed all 6domains of an established PCC framework; however, additional PCC elements emerged in 9 of 11 studies includingtimely responses, flexible scheduling, and humanized management, meaning tailoring communication andtreatment to individual needs and preferences. There were no differences in PCC domains between studiescomprised primarily of women and other studies.

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

Keywords: Women’s health, Patient-centred care, Equity, Quality, Frameworks, Models, Scoping review

BackgroundInequities in access to and quality of health care are per-vasive, leading to disparities in health outcomes. Whilethere are multiple causal factors, one of the key issues isgender bias [1].For example, research on access to care for cardiovas-

cular disease revealed that women were far less likely tobe referred for diagnostic tests and to cardiac rehabilita-tion compared with men [2], and even when referred,they were less likely to receive recommended treatment

compared with men [3]. Similarly, another study of pa-tients with acute myocardial infarction revealed thatwomen received guideline-recommended interventionssuch as timely reperfusion, antiplatelet therapy, statins,and cardiac rehabilitation less often than men [4]. Suchdisparities in the quality of care for women may beheightened by race or ethnicity in both high- and low-resource countries, and by a lack of primary research in-cluding women participants [5, 6].In 1995, the Fourth World Conference on Women of

the United Nations highlighted the need to deliverhealth care services that are sensitive to the needs andpreferences of women [2], and in 2009 the World HealthOrganization report, Women and Health, emphasized

© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

* Correspondence: [email protected] General Hospital Research Institute, University Health Network, 200Elizabeth Street, 13 EN-228, Toronto, ON M5G2C4, CanadaFull list of author information is available at the end of the article

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the need to improve the quality of women’s health careservices [7]. Over time, the concept of women’s healthhas broadened from a focus on sexual and reproductivehealth to a life-course approach that considers otherhealth challenges that affect women during and beyondtheir reproductive years, and the impact of social deter-minants on women’s health, morbidity and mortality [8].As a result of ongoing gender bias that influenceswomen’s health care and outcomes, one of the 17 goalsin the United Nations report, Gender Equality in the2030 Agenda for Sustainable Development, is to pro-mote women’s health and well-being by ensuring thatwomen have universal access to comprehensive healthcare that is responsive to gender and the life course [9].Patient-centred care (PCC) is an approach that tai-

lors care to individual needs, preferences and circum-stances by informing, engaging, and empoweringpatients (including families or care partners) [10].PCC is considered a key element of high qualityhealth care because it has been associated with pa-tient (knowledge, relationship with providers, serviceexperience and satisfaction, treatment compliance,health outcomes) and health system (cost-effectiveservice delivery) outcomes [11–13]. Accumulating re-search offers insight on the dimensions of PCC, butreveals discrepancies in what is thought to constitutePCC. A scoping review of 19 studies published from1994 to 2011 identified 25 unique frameworks ormodels of PCC; common domains pertained to thepatient-provider relationship (sharing information,empathy, empowerment), partnership (sensitivity toneeds, relationship-building), and health promotion(collaboration, case management, resource use) [14].A systematic review of 26 studies published from1992 to 2008 identified 13 unique instruments to as-sess PCC, further underscoring variability in howPCC is conceptualized [15].Unfortunately many patients do not receive PCC, par-

ticularly those with limited education, poor health, orwhose culture differs from their health care provider. Anational survey in the United States showed that, among2718 responding adults aged 40 years or greater with 10common medical conditions, there was considerablevariation in whether patients were told they had a choiceof treatment and whether they were asked for input inthe decision [16]. In a study of 509 adult patients seenby family physicians or general internists, PCC was ob-served more in for healthier, more educated patients[17]. A survey of 80 providers and 27 Muslim womenfound that both groups identified similar barriers toPCC: providers lacked understanding of patients’ reli-gious and cultural beliefs, and needs for modesty, andpatients lacked understanding of disease processes andmistrusted the health care system [18].

Delivering patient-centred care for women (PCCW)may serve as an important means of reducing gendereddisparities. However, it is unclear whether existing PCCframeworks or models are relevant to women’s health,or if the components, delivery and experience of PCCWvaries among women with different health conditions orpersonal characteristics. Greater understanding isneeded of what constitutes PCCW to support system-level planning of services for women, and to inform thedevelopment of interventions targeted to women andtheir care providers that support PCCW. While othershave reviewed published research on frameworks ormodels of PCC [14], no one has synthesized knowledgeabout PCCW frameworks or models. The purpose ofthis study was to review published research, and identifyand compare existing PCCW frameworks or models. IfPCCW frameworks or models are available, they couldserve as the basis for evaluating and improving care de-livery and outcomes among women. If lacking, then pri-mary research is needed to explore the elements of PCCvalued by women to inform the development of a com-prehensive PCCW framework.

MethodsApproachFor this study, a scoping review was chosen as the meth-odologic approach. A scoping review aims to rapidlymap the key concepts in published research on a giventopic [19]. Unlike a systematic review, which aims toprovide answers to a well-defined research question, ascoping review addresses broader topics, includes re-search of various designs, describes the extent, rangeand nature of research, and identifies gaps in the existingliterature [20]. A scoping review consists of five steps:scoping, searching, screening, data extraction, and dataanalysis. Reporting of the methods and findings wasguided by the Preferred Reporting Items for SystematicReviews and Meta-Analysis (PRISMA) criteria [21]. Datafor this review were publicly available so institutional re-view board approval was not necessary. A protocol wasnot registered for this review.

ScopingTo become familiar with this topic, a quick scan of rele-vant literature was undertaken by searching MEDLINEusing the Medical Subject Headings: women’s health andpatient-centered care. The titles and abstracts of the ini-tial search results were screened by KB and ARG, anddiscussed by the research team to collectively establisheligibility criteria based on the Population, Issue, Com-parisons, Outcomes (PICO) framework, which then in-formed the comprehensive search strategy. Given thepreliminary nature of a scoping review, the researchteam decided to focus on general PCCW frameworks

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pertaining to women with any health care concern orcondition, and to investigate disease-specific PCCWframeworks in a separate review (reported separately).Population referred to women, family members or care

partners aged 18 years or greater with any health careconcern or condition, or clinicians (i.e. physicians,nurses) involved in the care of those women in any typeof health care setting. Issues referred to the identificationor development of PCCW frameworks in which PCCwas explicitly labelled in the published manuscript as pa-tient-, person-, woman-, women-, client- or family-centered/centred care. Although there is no standardizeddefinition of PCC, PCC can be thought of as the individ-ualized, timely, coordinated, respectful, and compassion-ate care of patients that engages women and takes intoconsideration their values, preferences, information andsupportive care needs, such that they have the ability tomake clinical decisions and manage their own health[10]. With respect to comparisons, qualitative (inter-views, focus groups, qualitative case studies), quantitative(questionnaires, randomized controlled trials, timeseries, before/after studies, prospective or retrospectivecohort studies, case control studies) or mixed methodsstudies were eligible if they explored and/or comparedpatient or clinician views about PCCW, experiences withPCCW including enablers or barriers, or suggestions forimproving PCCW, or evaluated the impact of strategiesimplemented to support or improve PCCW. Such stud-ies could evaluate PCCW in patients and/or clinicianswith and without exposure to interventions, before andafter exposure, or across different interventions. The pri-mary outcome of interest was a PCCW framework (ormodel, theory, etc.), either employed by study, or com-piled or developed by the study based on data collectedin any of the aforementioned ways that may have in-cluded one or more of, but was not limited to PCCWconstructs, processes, determinants (enablers, barriers),or outcomes.Studies were considered ineligible if they primarily in-

volved trainees (i.e. medical students or residents) or al-lied health care professionals (i.e. dentists,physiotherapists); concluded that PCC is needed withouthaving studied PCC; labelled any form of clinical care ormulti−/inter-disciplinary care for patients as PCC; inves-tigated patient engagement in organizational- or system-level health service planning; examined the illness ex-perience of patients rather than the care experience; fo-cused on care delivered by peers or lay persons; orstudied the patient-centered medical home, health-related quality of life, electronic applications for patients,or patient preferences for treatment or clinical out-comes. Publications in the form of protocols, editorials,commentaries, letters, or meeting abstracts or proceed-ings were excluded. Systematic reviews were also

excluded although references were searched for eligibleprimary studies.

SearchingA comprehensive literature search was conducted onFebruary 26, 2018 in MEDLINE, EMBASE, SCOPUSand CINAHL by ARG based on a search strategy thatwas devised by a medical librarian and complied withthe Peer Review of Electronic Search Strategies checklist(Additional File 1) [22]. The search was purposefullybroad, including concepts for women’s health combinedwith explicit mention of PCC-related terms; by choosingto screen a large number of search results, we hoped tocapture studies that generated frameworks that mightotherwise be missed. The search was limited to researchpublished in English language from 2008 to that date, a10-year time span during which research on PCC be-came prevalent. We chose not to search the grey litera-ture given the methodological challenges that have beenidentified 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, inwhich screening and data extraction were performed.

ScreeningAs a pilot test, KB, HL and ARG independently screened50 records, and then compared and discussed findingsto establish a shared understanding of how to interpretand apply eligibility criteria. Then titles and abstractswere screened independently by KB and HL. All articlesconsidered potentially eligible by at least one reviewerwere retrieved for full-text screening, which was under-taken concurrent with data extraction. During screeningit became apparent that few studies focused on womenonly, so it was decided to include studies if at least halfof the participants were women or outcomes were ana-lyzed by gender.

Data extractionA data extraction table was developed to collect infor-mation on author, publication year, country, researchdesign (including methods of data collection, number ofparticipants, age range, proportion of female partici-pants), study objective, term used to refer to PCC, defin-ition or description of PCC employed or generated, andrelated findings. HL extracted data, which were inde-pendently checked by ARG.

Data analysisSummary statistics were used to report the number ofstudies published per year, country, research design, andterm used for PCC. Definitions or descriptions of PCCWacross all studies were reported textually. To furtheranalyze and compare PCCW across studies, PCC

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elements employed or generated in each study weremapped to the McCormack et al. PCC framework, andthe number of domains addressed in each study wassummarized [25]. The McCormack et al. framework waschosen from among other PCC frameworks we identi-fied in the literature because it was rigorously developed,extends beyond the clinical encounter, and is more com-prehensive than other frameworks [14]. It was estab-lished by systematically reviewing literature and relevanttheories, observing 38 medical encounters between can-cer patients and oncologists, interviewing those 38 pa-tients, and then reviewing the proposed domains with a13-member expert panel to refine the framework. Theresulting PCC framework consists of 31 sub-domainswithin six domains: fostering clinician-patient relation-ships, exchanging information, recognizing and respond-ing to patient emotions, managing uncertainty, makingdecisions, and enabling patient self-management.

ResultsSearch resultsA total of 9267 studies were identified, of which 6670were unique, and 6610 titles were excluded, leaving 60full-text articles to be screened. Of these, 48 articleswere excluded: 28 did not study PCCW, 13 were not aneligible publication type, and 8 did not report the num-ber 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.

Study characteristicsStudies were published from 2008 to 2017 inclusive inboth higher- and lower-resource countries with differinghealth 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 forcritical and intensive care, chronic conditions, older

people, ear, nose and throat care, primary care, surgicalinpatients, and complementary and alternative medicine.In terms of research design, the majority of studiesemployed qualitative interviews or focus groups (8,72.7%), while 3 studies involved surveys (27.2%). Themajority of studies used the term patient-centered or-centred or -centeredness (10, 90.9%). No studies in-cluded solely women, and no studies analyzed or re-ported findings by gender. At least 80.0% of participantswere women in 4 of the 11 studies [31, 34–36].

PCCW frameworkNone of the 11 studies was based upon, or generated aframework, model, theory or approach specific toPCCW. Instead they sought to identify and describe thecomponents of PCC.

PCC definition or measurementOf the 11 included studies, 3 (27.3%) did not a priori de-fine PCC. Among the 8 (72.7%) studies that definedPCC, 2 (25.0%) studies referred to it as accommodatinguser views in the design or evaluation of health services(system level), and 6 (75.0%) studies referred to it asvaluing people as individuals, respecting their needs andvalues, and addressing those preferences in clinical deci-sions (patient level). One study asked patients what PCCmeant to them and despite being unfamiliar with theword patient-centred, they were able to articulate that itmeant they were involved in their care, attended to, andconnected with their clinician [34]. All 11 studies de-scribed how PCC was measured; among the qualitativestudies, participants were asked about their experiencesof care and what they valued about their clinician, envir-onment and information received. Quantitative studiesasked participants about attributes of PCC including re-spect for patient values, engagement, quality of commu-nication and relationship with care providers.

Figure 1 PRISMA diagram

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Table 1 Data extracted from included studies

Study Research design Objective PCClabel

PCC definition ormeasure

McCormack PCCelements described orrecommended

Additional PCCelements described orrecommended

Cheraghi2017 Iran[26]

Qualitative interviewswith patients (n = 10;mean age 52.6; 5women, 5 men) 50.0%women

To explore anddescribe PCC in criticalcare units

patient-centered

Authors defined PCC asthe provision ofrespectful care inresponse to patients’preferences, needs andvalues Duringinterviews, participantswere asked to describeexperiences andperceptions of PCC andhow it can beachieved; themesestablished inductively

• Relationship:Maintaining humandignity, fulfillingpatients’ needs

• Information:Establishingtherapeuticcommunication,analyzing thesituation,individualizing care;patients receivingadequate informationabout treatmentreduced anxiety

• Decision-making: In-volving patients indecision-making in-creased satisfactionwith care

• Self-management: Cli-nicians addressed andalleviated concerns,and outlined self-careactivities, which pro-moted patientautonomy

• Ease of contact:Timely response torequests gainedpatient trust andsense of security

• Humanization:identify, prioritize,and fulfill patients’biological,psychosocial, andspiritual needs),individualization ofcare

Cuevas 2017USA [27]

Qualitative focusgroups with patients(n = 142; age notreported; 14 groupswith women, 13 withmen; n in each groupnot reported) 51.9%women groups

To explore viewsabout PCC acrossthree groups withchronic conditions (i.e.diabetes, hypertension)in primary care: AfricanAmericans, Europeansand Latinos

patient-centered

PCC not definedDuring interviews,participants were askedabout what makes agood and badexperience; themesestablished inductively

• Information: Patientswant clinicianattentive to patients’needs and listen totheir comments/concerns

• Decision-making: Pa-tients wanted to bemore participatory intheir interactions withproviders and bemore involved in theirown care

• Consider race/ethnicity: AfricanAmericans felt that itwas important forclinician to considerpatient’s race intreatment plans

• Speak nativelanguage: Manypreferred a physicianthat knew theirlanguage in order tocommunicateeffectively withpatients, enablepatients tounderstand theirrecommendations

• *differences infindings betweenmen and women notreported

Adamson2016Scotland[28]

Qualitative interviewswith patients (n = 15,aged 69 to 95; 8women, 7 men) 53.3%women

To understand themeaning of PCC forolder people attendingday hospitals for avariety of health careissues

person-centred

PCC not definedDuring interviews,participants were askedabout talking withnurses, relationships,involvement indecisions, feelingvalued, and gettinginformation; themesemerged inductively

• Relationships:Developed trustingrelationship withnursing staff,depended on nursesand had confidencethat they wouldadvocate for them,were informed abouttheir progress withtreatment or care,built rapport withstaff

• Information: patientsappreciated whenthey were informed

• Coordination of care:Patients reported thatthey were seen byclinicians in theirhome followingtreatment to see ifthey had everythingthey needed. Thiscontinuation of carewas appreciated

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Table 1 Data extracted from included studies (Continued)Study Research design Objective PCC

labelPCC definition ormeasure

McCormack PCCelements described orrecommended

Additional PCCelements described orrecommended

about how they wereprogressing withtreatment. Followingtreatment, patientsvalued knowing whatwas coming next incare.

• Relationships: whenstaff shared aspects oftheir own life withthe patient andparticipated in casual‘banter’ thisstrengthened therelationship withclinical staff

• Decision-making: Pa-tients felt involved indecision-making,which enhanced theirdignity and respect

Gill 2016Canada [29]

Qualitative interviewswith patients andfamily members (n =32; 15/46.9% aged 50to 64, 8 were < 50, 9≥65; 11 patients, 21family; 17 women, 15men) 53.1% women

To understand viewsabout PCC amongintensive care unitpatients and theirfamilies

patient-centered

PCC not definedDuring interviewsparticipants were askedto describe experiencesthey wished had beendifferent; themesemerged inductively

• Decision-making:Family felt stressedabout being patient’sspokesperson. Fam-ilies’ ability to makedecisions about pa-tient care and haveconfidence in theirdecisions was im-pacted by the infor-mation and supportthey received.

• Relationship: Providerswere perceived asimpatient and familymembers sometimesfelt dismissed; theydesired greaterempathy

Doubova2016 Mexico[30]

Telephone survey ofpatients (n = 6005;82.2% were aged 20 to59; 3126 women, 2869men) 52.1% women

To explore publicviews about the PCCelements thatcontribute to highquality primary care

patient-centered

PCC takes into accountthe view of users in thedesign, provision andevaluation of healthcare services Surveyincluded 10 PCCattributes based onCommonwealth Fundsurvey used in othercountries: primary careprovider (PCP) knowsrelevant informationabout the patient’smedical history; PCPgives an opportunity toask questions aboutrecommendedtreatment; PCP spendsenough time with thepatient; PCP explainsthings in a way that iseasy to understand;PCP helps the patientto coordinate orarrange his/her

• Information: PCPprovides informationand explanations, andopportunities to askquestions

• Ease of contact: Easyto reach the primarycare clinic

• Problems are solved:PCP solves mosthealth problems

• Familiarity withpatient: PCP knowsrelevant info aboutpatient’s medicalhistory

• Coordination of care:PCP coordinateshealthcare

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Table 1 Data extracted from included studies (Continued)Study Research design Objective PCC

labelPCC definition ormeasure

McCormack PCCelements described orrecommended

Additional PCCelements described orrecommended

healthcare from otherdoctors and places;patient perceivesdifficulties incommunication withthe primary care clinicduring regular practicehours about a healthproblem; a nurse oranother clinical staff(other than a doctor) isinvolved in primaryhealthcare; PCP whoduring a routinemedical checkup in thepast 2 years talkedabout an exercise orphysical activity; PCPwho during a routinemedical checkup in thepast 2 years spoke of ahealthy diet andhealthy eating; PCPwho during a routinemedical checkup in thepast 2 years talkedabout things thatworry the patient orcause stress

Raja 2015USA [31]

Qualitative interviewswith patients (n = 20;aged 21 to 74; 18women, 2 men) 90.0%women

To explore viewsabout PCC amongprimary care patientswith little or no healthinsurance

patient-centered

Authors cited Instituteof Medicine PCCdefinition: Providingcare that is respectfuland responsive toindividual patientpreferences, needs, andvalues, and ensuringthat patient valuesguide all clinicaldecisions Duringinterviews, participantswere asked about whatmade visits positive ornegative; themesemerged inductively

• Relationship: Chattingwith patients, askingquestions, and tellingpatients aboutthemselves helpsbuild rapport

• Information: Giveoverview of theprocedure and clearexpectations, results,appointment flow,realistic expectationof pain; patientsdesired more timewith provider

• Physical setting:Pleasant environmentmakes participantsfeel respected andwelcomed

• Humanization:Feeling listened to,cared for, or seen asan entire humanbeing with needsand emotions;providers considerthe totality of apatient’s physicalhealth, their ways ofcoping, and theirenvironment

• Avoiding jargon:Express technicalterms in anunderstandablemanner

• Ease of contact:Inability to scheduleappointments led tofeeling devalued

Leijen-Zeelenberg2015Netherlands[32]

Qualitative interviewswith patients (n = 22;mean age 52.8 years;13 women, 9 men)59.1% women

To explore PCC viewsand preferencesamong those visitingan ear, nose & throatoutpatient unit

patient-centred

Authors defined PCCusing Institute ofMedicine (IOM) 6domains: Respect forpatients’ values,preferences andexpressed needs;Information,communication andeducation;

• Information: Somerespondents felt thatthey had to beassertive at the clinicin order to getrespect for theirpreferences andneeds. Being able toask questions duringconsultations and

• Coordination of care:some find it difficultto plan more than 3months in advanceand disliked theinflexibility in theplanning system.Negative experiencesdue to alternatingdoctors (seeing

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Table 1 Data extracted from included studies (Continued)Study Research design Objective PCC

labelPCC definition ormeasure

McCormack PCCelements described orrecommended

Additional PCCelements described orrecommended

Coordination andintegration of care;Emotional support -relieving fear andanxiety; Physicalcomfort; Involvementof family and friendsDuring interviews,participants were askedto share experiencesrelated to each of the6 IOM domains; viewsabout themes emergedinductively

receive clearresponses was veryimportant. It is alsoimportant to get anexplanation when anexpressed preferenceis not being compliedwith.

• Emotional support:More attentionneeded on emotionaland psychologicalsupport.

different doctors atsubsequentappointments).

• Physical setting: Niceatmosphere atoutpatient clinichelps providephysical comfort.

• Involvement of familyand friends

Papp 2014Hungary[33]

Qualitative focusgroups (n = 61; 14groups with 8 to 10per group; 69.8% aged41 or greater; 34women, 27 men)55.7% women

To explore viewsabout the elements ofhigh quality primarycare including patient-centeredness

patient-centered

Authors defined PCC asthe degree to which asystem actuallyfunctions by placingthe patient at thecenter of its delivery ofhealth-care, assessed interms of patient’s ex-perience During inter-views, participantswere asked about gen-eral aspects of qualityand elements ofpatient-centeredness;themes emergedinductively

• Information: Nursesshould have animportant role inproviding informationto patients; physiciansshould spend time toexplain the situationto patients

• Relationship: Patientsexpect doctor to beempathetic, friendly,attentive, goodlisteners, sympathetic,and willing to help

• Avoiding jargon:Information forpatients should beunderstandable andclear

• Humanization:Patients expect to betreated as a humanbeing, not only as adisease

Marshall2012Australia[34]

Qualitative interviewswith patients (n = 10;aged 30 to late 60’s; 8women, 2 men) 80.0%women

To explore viewsabout PCC amongsurgical inpatients

patient-centred

Authors noteinconsistency in PCCdefinitions (treatingpeople as individuals,tailoring care topatients’ needs,understanding thepatient as a uniquehuman being, etc.) andlack of definitionderived from patientsDuring interviews,participants were askedwhat they valued incare, what theythought patient-centred care meant,and what constitutespatient-centred care;themes emergedinductively

• Relationship: Helpful,respectful, opencommunication

• Decision-making: Be-ing involved in deci-sions and tocontribute in careconsultations

Bann 2010USA [35]

Survey of patients(n = 216; 43% aged 55or greater; 184women, 31 men)85.2% women

To assess views aboutPCC amongcomplementary andalternative medicinepatients

patient-centered

Authors defined PCC asbuilding an empatheticrelationship thatconsiders the patientas a partner with thehealth care provider inthe priorities, problems,and goals ofTreatment. The surveyincluded 10 PCCattributes: I feel seenand heard as a uniqueindividual by mytherapist; My therapist

– • Humanization:Feeling seen andheard as a uniqueindividual; receivingindividualizedtreatment

• Problems are solved:The therapist beinginterested in findingand addressing theirhealth problems

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PCC domainsTable 2 summarizes the mapping of PCC concepts in in-cluded studies to McCormack’s PCC framework [25].None of the studies addressed all 6 domains. Although onestudy addressed 4 of 6 domains and two studies addressed3 of 6 domains. The domains most frequently addressed bythe 11 studies were exchanging information (n = 8), foster-ing a patient-clinician relationship (n = 7) and making deci-sions (n = 5). With respect to exchanging information,patients wanted clinicians to ask about their life circum-stances and personal values, listen and acknowledge needsor concerns, accommodate questions, detail next steps orfollow-up care, provide information about treatment op-tions, and justify treatment prescribed when counter to pa-tient preference [26–28, 30–33, 36]. Regarding fostering apatient-clinician relationship, patients wanted clinicians to

be respectful, advocate for them, get to know them, shareinformation about themselves, engage family members, ex-press empathy, not rush them, and allow them to maintaindignity [26, 28, 29, 31, 33, 34]. Regarding decision-making,patients wanted to be sufficiently informed such that theyand family members could be involved in decisions, whichthey said enhance satisfaction, respect, dignity [26–29, 34].Domains least addressed among the 11 studies wereresponding to patient emotions (n = 1), enabling patientself-management (n = 1) and managing uncertainty (n = 0).Patients said that clinicians should offer more attention toemotional and psychological needs [32], and they appreci-ated autonomy when clinicians outlined self-care activities[26]. There were no differences in PCC domains betweenstudies comprised primarily of women [31, 34–36] andother studies.

Table 1 Data extracted from included studies (Continued)Study Research design Objective PCC

labelPCC definition ormeasure

McCormack PCCelements described orrecommended

Additional PCCelements described orrecommended

has a full picture of meas a unique individual;My therapist is reallyinterested in findingand addressing myhealth problems; Theroot causes of myproblems are identifiedby my therapist; Theroot causes of myproblems are beingtreated by mytherapist; Thetreatment isindividualized for me ateach session; Mytherapist receivesfeedback from mybody that guidestreatment; My therapistasks me for feedbackfrom my body thatguides treatment; Iknow what to expectduring treatmentsessions; My therapistteaches me ways torelieve symptomsmyself

Davis 2008Australia[36]

Survey of patients(n = 78; mean age 82years; 72 women, 6men) 92.3% women

To assess views aboutPCC among olderpatients recentlydischarged from a sub-acute setting

person-centred

Authors defined PCC asvaluing people asindividuals and as theperson being the focalpoint in a partnershipthat is both respectfuland reciprocal Thesurvey included fivedimensions:personalisation,empowerment,information,approachability andavailability, and respect

• Information: Many feltthat they were notbeing told what wasgoing on, lack ofcommunicationbetween staff

• Relationship: Respectwas typicallydemonstrated by staff.

• Humanization:Treated as a wholeperson

• Ease of contact:Majority found theywere unable to locatenurses for assistance,and would like tospeak with nursesand doctors moreoften

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Additional PCC elementsAlthough studies did not consistently address PCC do-mains 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 re-sponses to patient requests helped to gain trust and se-curity and continuation and coordination of carefollowing treatment helped patients to feel cared for.Flexibility of scheduling allowed patients to plan theirlife around care and inflexibility of scheduling and lim-ited appointment times led to patients feeling devalued.Several studies identified the theme of humanization,meaning feeling seen and heard as a person and receiv-ing individualized communication and treatment that

fits their personal needs. There were no differences inadditional PCC elements between studies comprised pri-marily of women [31, 34–36] and other studies.

DiscussionPCCW may attenuate the widespread gendered dispar-ities in health care delivery and outcomes. However, thisreview revealed that there are no established frameworksof PCCW. Studies varied in how they described PCC,with little direct consideration of women’s unique needsand preferences because none of the studies includedsolely women, or analyzed or reported findings by gen-der. Moreover, none of the studies addressed all 6 do-mains of an established PCC framework, identifying

Table 2 PCC domains measured or revealed in included studies

Study Fostering therelationship

Exchanginginformation

Addressingemotions

Managing uncertainty Making decisions Enabling self-management

Domainsper study(n)

• Discussroles andresponsibilities• Honesty

and openness• Trust in

cliniciancompetence• Express

caring• Build

rapport

• Explore needsandpreferences

• Shareinformation

• Provideinformationresources

• Assess andfacilitateunderstanding

• Explore andidentifyemotions

• Assess anxietyor depression

• Validateemotions

• Expressempathy orreassurance

• Provide helpto deal withemotions

• Define uncertainty• Assess uncertainty(cognitive)

• Use emotion-focusedmanagement strategies(affective)

• Use problem-focusedmanagement strategies(behavioural)

• Communicate aboutdecision needs,support and process

• Prepare for deliberationand decision

• Make and implement achoice and action plan

• Assess decision qualityand reflect on choice

• Learn andassess

• Share andadvise

• Prioritizeand plan

• Prepare,implementand assist

• Arrangeand follow-up

Cheraghi 2017Iran [26]

x x – – x x 4

Cuevas 2017United States[27]

– x – – x – 2

Adamson 2017Scotland [28]

x x – – x – 3

Gill 2016 Canada[29]

x – – – x – 2

Doubova 2016Mexico [30]

– x – – – – 1

Raja 2015 UnitedStates [31]

x x – – – – 2

Leijen-Zeelenberg 2015Netherlands [32]

– x x – – – 2

Papp 2014Hungary [33]

x x x – – – 3

Marshall 2012Australia [34]

x – – – x – 2

Bann 2010United States[35]

– – – – – – 0

Davis 2008Australia [36]

x x – – – – 2

Studies includingdomains (n, % of11)

7 (63.6) 9 (72.7) 2 (18.2) 0 (0.0) 5 (45.5) 1 (9.1)

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specific gaps in how PCCW has been conceptualized oroperationalized [25]. However, additional PCC elementsemerged in 9 of 11 studies including timely responses,flexible scheduling, and humanized or individualizedmanagement.These findings are novel because no prior work had

conceptualized PCC specifically for women. While nu-merous frameworks for PCC are available, comparisonof domains across those frameworks demonstrated vari-ability [14, 15, 25]. Our study also showed that, whilesome PCC components in included studies matchedthose of the McCormack et al. framework [25], add-itional PCC elements emerged. Given that the McCor-mack et al. framework was developed for cancer patients[25], the variability in PCC domains across frameworksunderscores that some PCC elements may be commonto all patients, while others may be unique to specificconditions. This is consistent with the fact that PCC ismeant to accommodate individual needs and preferences[10], which in part must be influenced by conditions orhealth care issues, and in part by individual characteris-tics. It stands to reason then that at least some aspectsof PCC may be specific to women, although that wasnot evident in the included studies because there wereno differences in PCC domains between studies com-prised primarily of women [31, 34–36] and other studies.Experts agree that there may not be a global definitionof PCC [37]. However, our findings underscore the pau-city of research on PCCW.Strengths of this study include the use of rigorous

methods [20] including a comprehensive search of mul-tiple databases, independent screening and data extrac-tion, compliance with standards for the reporting ofreview [21] and for searching of electronic databases[22], and use of a PCC framework upon which to mapPCC elements from included studies [25]. Several factorsmay limit the interpretation and application of the find-ings. Despite having conducted a comprehensive searchof multiple databases we may not have identified all rele-vant studies, in part because our search was restricted toEnglish-language studies and studies that used the labelof patient- or person-centred (or centered) care. We didnot search the grey literature given the methodologicalchallenges that have been identified by others [23, 24];as a result, important information may have beenmissed. Few studies were eligible and none includedsolely women, so the findings may not truly representthe views of women about PCC. Risk of bias of includedstudies was not assessed as this is not customary for ascoping review [20]. Although scoping reviews ofteninclude consultation with stakeholders to interpret thefindings, this step was not done because studies werefew and provided sparse details [20]. Our analysis re-lied on the McCormack et al. PCC framework [25],

which may not be a universally recognized or ac-cepted framework. Still, as a comprehensive PCCframework, it served as a basis from which to assesswhether and how PCCW has been studied, evaluatedor improved.The purpose of this study was to identify and compare

existing PCCW frameworks. Strikingly, despite researchdemonstrating disparities in care among women [1–6],and global advocacy for research to improve quality ofcare for women [7–9], no research has conceptualizedPCCW. Hence, there is little guidance on what consti-tutes PCCW or how to evaluate and improve PCCW.Given the aging and ethnic diversity of the female popu-lation, rise in labour force participation, shift to marriageand childbearing later in life, increase in single parenthouseholds largely headed by women, women’s simul-taneous roles as paid workers and caregivers, and gapsin earnings for women compared with men, the socio-economic implications of poor health care for womenare profound [38]. Given these socio-economic impli-cations, consideration of PCCW is urgently needed.To better address PCCW, and in so doing alleviate ormitigate the socio-economic factors that contribute togendered inequities in health care quality, advocatesin Canada and the United States have issued recom-mendations for health care reform that include afocus on women’s health; comprehensive, integratedprograms and services meeting women’s unique needsacross the lifespan; better provider training aboutwomen’s unique health needs and the differential ef-fects of particular problems; vigorous public healthleadership to shape the women’s health agenda, rec-ognizing the social and economic context of theirlives; consideration of gender and health in allgovernment policies; developing and implementingguidelines that include specific evidence-based genderelements; and sharing information with women dir-ectly [38, 39].This review revealed several pressing areas where fu-

ture research is needed. Primary research is needed toexplore the elements of PCC valued by women includingacross different conditions. More needs to be under-stood about the challenges faced by women and healthcare professionals in achieving PCC. Finally, research isneeded to examine whether and how policies, guidelinesand interventions could better promote and supportPCCW so that more women receive it. In addition toprimary research, much could be learned from publishedinvestigations of women’s health care preferences andexperiences in various contexts. For example, researchhas explored patient-centred outcomes desired bywomen exposed to sexual trauma or intimate partnerviolence [40], and what is considered by women to bepatient-centred maternity care [41].

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ConclusionsDespite international calls for strategies to reduce gen-dered disparities in health care delivery and outcomes,this scoping review identified no studies that employedor developed a PCCW framework, and no studies thatinvolved solely women in exploring how to achievePCCW. Thus primary research is needed to generateknowledge about PCCW models, processes, facilitators,challenges, interventions and impacts.

Supplementary informationSupplementary information accompanies this paper at https://doi.org/10.1186/s12905-019-0852-9.

Additional file 1. MEDLINE search strategy.

AbbreviationsPCC: Patient-centered care; PCCW: Patient-centered care for women;PICO: Population, Intervention, Comparisons, Outcomes; PRISMA: PreferredReporting Items for Systematic Reviews and Meta-Analysis

AcknowledgementsWe thank Kainat Bashir and Helen Liu for assistance with data acquisitionand analysis.

Authors’ contributionsARG conceived the study, acquired funding, planned and led the study;acquired, analyzed and interpreted data; drafted and finalized themanuscript, and is accountable for the work. BBN helped to oversee otherstaff, collect, analyze and interpret data, draft the manuscript, and isaccountable for the work. SD, SLG, CG, DES, and FCW helped to conceiveand plan the study, interpret data, draft and revise the manuscript, and areaccountable for the work. All authors read and approved the final version ofthe manuscript.

FundingThis study was funded by the Ontario Ministry of Health and Long TermCare Health Services Research Fund. The funder took no part in the designof the study; collection, analysis or interpretation of data; or in writing themanuscript.

Availability of data and materialsThe dataset(s) supporting the conclusions of this article is (are) includedwithin the article (and its additional file(s).

Ethics approval and consent to participateNot applicable.

Consent for publicationNot applicable.

Competing interestsThe authors declare that they have no competing interests.

Author details1Toronto General Hospital Research Institute, University Health Network, 200Elizabeth Street, 13 EN-228, Toronto, ON M5G2C4, Canada. 2Toronto GeneralHospital Research Institute, University Health Network, Toronto, Canada.3Women’s College Hospital, Toronto, Canada. 4York University and UniversityHealth Network, Toronto, Canada. 5Society of Obstetricians andGynaecologists of Canada, Ottawa, Canada. 6Sunnybrook Health SciencesCentre, Toronto, Ontario, Canada.

Received: 28 January 2019 Accepted: 15 November 2019

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