Dimensions Of Patient-centeredness Research Articles

P-334 Are measurements of patient-centeredness of endometriosis care and quality of life in women with endometriosis associated?

Abstract Study question To examine the hypothesis that experiences with patient-centred endometriosis care are associated with the endometriosis-specific quality of life dimensions ‘emotional wellbeing’ and ‘social support’. Summary answer Positive associations were found between experienced patient-centeredness of care and the quality of life domains ‘emotional well-being’ and ‘social support’. What is known already Women with endometriosis have lower quality of life. Furthermore, research showed that the patient-centeredness of endometriosis care could still be improved. The quality of the provided endometriosis care might impact women’s quality of life, as demonstrated in the field of fertility care. A previous explorative study identified associations between patient-centred endometriosis care and two in five dimensions of endometriosis-specific quality of life (i.e. ‘emotional well-being’ and ‘social support’) but concluded that a more focussed and adequately powered study was needed. Study design, size, duration A secondary regression analysis of two cross-sectional cohort studies was performed. Both studies investigated patient-centeredness of endometriosis care and endometriosis-specific quality of life using respectively the ENDOCARE questionnaire (ECQ) and the Endometriosis Health Profile 30 (EHP-30). In total the data from 300 women was eligible for analysis, exceeding the, according to our power calculation, required sample size of 200 women. Participants/materials, setting, methods The participating women all had surgically proven endometriosis and were recruited by one secondary and two tertiary endometriosis clinics in the Netherlands. The regression analysis focused on the previously found association between the ten dimensions of the ECQ and the EHP-30 domains ‘emotional well-being’ and ‘social support’ rather than all five EHP-30 domains. After the Bonferroni correction to limit type I errors, the adjusted p-value was 0.003 (0.05/20). Main results and the role of chance The participating women had a mean age of 35.7 years and had predominantly been diagnosed with moderate to severe (68.6%). Regarding the EHP-30 domain ‘emotional well-being’, an association was found with the following five patient-centeredness dimensions: ‘respect for patients’ values, preferences and expressed needs’ (p = 0.046, Beta=0.159), ‘coordination and integration of care’ (p = 0.013, Beta=0.193), ‘information, communication and integration of care’ (p = 0.010, Beta=0.258), ‘emotional support and alleviation of fear and anxiety’ (p = 0.010, Beta=0.178), and ‘continuity and transition’ (p = 0.015, Beta=0.179). None of the associations between the EHP-30 domain ‘emotional well-being’ and a dimension of patient-centred endometriosis care, were significant when compared to the Bonferroni corrected p-value (all p ≥ 0.010). The EHP-30 domain ‘social support’ proved to be significantly associated to the following three dimensions of patient-centered endometriosis care (in order of strength): ‘information, communication and integration of care’ (p < 0.001, Beta=0.436), ‘coordination and integration of care’ (p = 0.001, Beta=0.307), and ‘emotional support and alleviation of fear and anxiety’ (p = 0.002, Beta=0.259). Limitations, reasons for caution This cross-sectional studies identified associations rather than proving causality between experiencing less patient-centeredness of care and having lower quality of life. Nevertheless, it is very tangible that some causality exists, either directly or indirectly (e.g. through empowerment) and that by improving patient-centeredness, quality of life might be improved as well. Wider implications of the findings Improving the patient-centeredness of endometriosis care was already considered an important goal, but even more so given its association with women’s quality of life, which is increasingly considered the ultimate measure of health care quality. Trial registration number not applicable

Prenatal diagnosis of congenital diaphragmatic hernia: Parental counselling and support needs

To define the dimensions of patient-centeredness of prenatal care for parents who had a fetus with isolated congenital diaphragmatic hernia (CDH) by exploring their values, experiences, needs and preferences. In-depth interviews with parents who were faced with the prenatal diagnosis of isolated CDH. Interviews (n=18) identified seven dimensions of patient-centeredness. Parental preferences are respected by unconditional acceptance of parental choices and needs. After diagnosis access to care should occur by swift referral to a specialised centre to prevent parents receiving contradictory information. Information and education help parents to gain some sense of control and cope with the many uncertainties. A multidisciplinary team with a coordinating professional is perceived supportive (coordination and integration), and seamless referral between local and treatment centres reduces parental distress (continuity and transition). Family-centred emotional support helps parents to cope with emotions and distress. Informal support by involvement of family and friends and trusted peer-support is of added value. The impact of the uncertainty of outcome in this condition is tremendous and needs to be considered when providing prenatal care. After initial diagnosis, one should avoid speculation about the severity of the condition and outcome, and provide swift referral to a specialist centre expert in managing CDH. Provision of realistic and comprehensive information helps parents cope. Multidisciplinary and continuous support throughout the full trajectory, but also integrated psychosocial support should become standard-of-care.

Minding the Gap Between the Policy and Practice of Patient-Centeredness: Cocreating a Model for Tensional Dialogue in the “Active Patient Support” Program

Several studies identify obstacles to patient-centered care that can be eradicated by bridging the gap between policy goals and practice. In this article, "patient-centeredness" is theorized as an unstable entity riddled with intrinsic, ineradicable tensions. The purpose of the article is to propose a reflexive approach to the tensions as the most appropriate strategy for narrowing the gap between policy and practice. The reflexive approach is illustrated in an account of an action research project on a Danish, patient-centered initiative, "Active Patient Support." The account focuses on the development of a dialogic communication model through collaborative, reflexive analyses of the tensions in the enactment of "patient-centeredness" in dialogue between health care practitioners and citizens-in particular, the tension between empowerment and self-discipline. Finally, the conceptual expansion of one of the dimensions of patient-centeredness, "health-practitioner-as-person," is discussed as a platform for reflexivity, and the limitations of reflexivity are addressed.

A survey of quality measurement in Canadian sleep centers

RATIONALE: Quality indicators have been published for the management of sleep-disordered breathing, but the extent to which quality of care is measured by Canadian sleep centers is unknown. OBJECTIVE The objective of this study is to characterize the measurement of healthcare quality as reported by Canadian sleep centers. METHODS We performed a national online survey of Canadian sleep centers. Surveys were distributed by Canadian respiratory and sleep specialty societies. Respondents reporting formal quality measurement were contacted to complete telephone interviews that characterized the process through which quality was assessed. Questions explored the indicators used, the process by which quality data was collected and reported and barriers and facilitators to effective quality measurement. Quality indicators were categorized based on the aspect of clinical care being evaluated and classified using the Institute of Medicine’s (IOM) quality dimensions (safe, effective, patient-centered, timely, efficient, equitable) and Donabedian’s structure-process-outcome framework. MEASUREMENTS AND MAIN RESULTS: Thirty-four survey responses were received, of which 20 sleep centers reported formal quality measurement. Interviews with 19 of these centers identified 61 indicators that were classified into 11 unique categories. The IOM dimensions of patient-centeredness, effectiveness and timeliness were most common while no centers evaluated equity and only one center measured efficiency. All centers used process measures, while most used outcome measures and only one used a structural quality measure. CONCLUSIONS Among Canadian sleep centers that report formally assessing healthcare quality, measurement was highly variable. These findings highlight the need to identify and mitigate barriers to quality measurement to improve sleep-disordered breathing care.

Speech-language pathologists’ preferences for patient-centeredness

PurposePreferences for patient-centeredness is an important indicator in healthcare service delivery. However, it remains largely unexplored in the field of communication science and disorders. This study investigated speech-language pathologists’ (SLPs) preferences for patient-centeredness MethodThe study involved a cross-sectional survey design. SLPs (n = 102) fully completed the modified Patient-Practitioner Orientation Scale (PPOS; Krupat et al, 2000) and also provided demographic details. Data were analyzed using descriptive statistics, correlation, and linear regression methods. ResultsMean PPOS scores indicated that SLPs value patient-centeredness. There was a strong positive correlation among sharing and caring subscales with the full-scale. Results from the linear regression modeling suggested no relationship between demographic factors and preferences for patient-centeredness. ConclusionsSLPs value patient-centeredness, although there may be regional and cultural variations. Qualitative investigations may help uncover dimensions of patient-centeredness that were not captured in the PPOS scale. In addition, further research should explore congruence in preferences for patient-centeredness among SLPs and patients.

Which Dimensions of Patient-Centeredness Matter? - Results of a Web-Based Expert Delphi Survey.

BackgroundPresent models and definitions of patient-centeredness revealed a lack of conceptual clarity. Based on a prior systematic literature review, we developed an integrative model with 15 dimensions of patient-centeredness. The aims of this study were to 1) validate, and 2) prioritize these dimensions.MethodA two-round web-based Delphi study was conducted. 297 international experts were invited to participate. In round one they were asked to 1) give an individual rating on a nine-point-scale on relevance and clarity of the dimensions, 2) add missing dimensions, and 3) prioritize the dimensions. In round two, experts received feedback about the results of round one and were asked to reflect and re-rate their own results. The cut-off for the validation of a dimension was a median < 7 on one of the criteria.Results105 experts participated in round one and 71 in round two. In round one, one new dimension was suggested and included for discussion in round two. In round two, this dimension did not reach sufficient ratings to be included in the model. Eleven dimensions reached a median ≥ 7 on both criteria (relevance and clarity). Four dimensions had a median < 7 on one or both criteria. The five dimensions rated as most important were: patient as a unique person, patient involvement in care, patient information, clinician-patient communication and patient empowerment.Discussion11 out of the 15 dimensions have been validated through experts’ ratings. Further research on the four dimensions that received insufficient ratings is recommended. The priority order of the dimensions can help researchers and clinicians to focus on the most important dimensions of patient-centeredness. Overall, the model provides a useful framework that can be used in the development of measures, interventions, and medical education curricula, as well as the adoption of a new perspective in health policy.

Measuring the quality of patient-centered care: why patient-reported measures are critical to reliable assessment.

PurposeThe Institute of Medicine (IOM) identified patient-centeredness as crucial to quality health care. The IOM endorsed six patient-centeredness dimensions that stipulated that care must be: respectful to patients’ values, preferences, and expressed needs; coordinated and integrated; provide information, communication, and education; ensure physical comfort; provide emotional support; and involve family and friends. Patient-reported measures examine the patient’s perspective and are essential to the accurate assessment of patient-centered care. This article’s objectives are to: 1) use the six IOM-endorsed patient-centeredness dimensions as a framework to outline why patient-reported measures are crucial to the reliable measurement of patient-centered care; and 2) to identify existing patient-reported measures that assess each patient-centered care dimension.MethodsFor each IOM-endorsed patient-centeredness dimension, the published literature was searched to highlight the essential role of patients in assessing patient-centered care and informing quality improvement efforts. Existing literature was also searched to identify examples of patient-reported measures that assess each patient-centeredness dimension.ConclusionPatient-reported measures are arguably the best way to measure patient-centeredness. For instance, patients are best positioned to determine whether care aligns with patient values, preferences, and needs and the Measure of Patient Preferences is an example of a patient-reported measure that does so. Furthermore, only the patient knows whether they received the level of information desired, and if information was understood and can be recalled. Patient-reported measures that examine information provision include the Lung Information Needs Questionnaire and the EORTC QLQ-INFO25. In relation to physical comfort, only patients can report the severity of physical symptoms and whether medications provide adequate relief. Patient-reported measures that investigate physical comfort include the Pain Care Quality Survey and the Brief Pain Inventory. Using patient-reported measures to regularly measure patient-centered care is critical to identifying areas of health care where improvements are needed.

The contribution of online peer-to-peer communication among patients with adrenal disease to patient-centered care.

BackgroundAddison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care.ObjectiveOur aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care.MethodsFor this study a consecutive sample of 300 questions (“threads”) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti.ResultsFrom the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences.ConclusionsOn an online patient forum for Cushing’s syndrome and Addison’s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals.

An integrative model of patient-centeredness - a systematic review and concept analysis.

BackgroundExisting models of patient-centeredness reveal a lack of conceptual clarity. This results in a heterogeneous use of the term, unclear measurement dimensions, inconsistent results regarding the effectiveness of patient-centered interventions, and finally in difficulties in implementing patient-centered care. The aim of this systematic review was to identify the different dimensions of patient-centeredness described in the literature and to propose an integrative model of patient-centeredness based on these results.MethodsProtocol driven search in five databases, combined with a comprehensive secondary search strategy. All articles that include a definition of patient-centeredness were eligible for inclusion in the review and subject to subsequent content analysis. Two researchers independently first screened titles and abstracts, then assessed full texts for eligibility. In each article the given definition of patient-centeredness was coded independently by two researchers. We discussed codes within the research team and condensed them into an integrative model of patient-centeredness.Results4707 records were identified through primary and secondary search, of which 706 were retained after screening of titles and abstracts. 417 articles (59%) contained a definition of patient-centeredness and were coded. 15 dimensions of patient-centeredness were identified: essential characteristics of clinician, clinician-patient relationship, clinician-patient communication, patient as unique person, biopsychosocial perspective, patient information, patient involvement in care, involvement of family and friends, patient empowerment, physical support, emotional support, integration of medical and non-medical care, teamwork and teambuilding, access to care, coordination and continuity of care. In the resulting integrative model the dimensions were mapped onto different levels of care.ConclusionsThe proposed integrative model of patient-centeredness allows different stakeholders to speak the same language. It provides a foundation for creating better measures and interventions. It can also be used to inform the development of clinical guidance documents and health policy directives, and through this support the shift towards patient-centered health care.

Evaluation of dimensions and measurement scales in patient-centeredness

BackgroundPatient-centeredness has gained importance over the last two decades. However, there is an absence of theoretical clarity regarding the term patient-centeredness. This results in inconsistent measurement of patient-centeredness, which leads to difficulties in comparing research results. To overcome these difficulties, the aims of this study are (1) to identify the dimensions of patient-centeredness and include them in an integrative model, (2) to select and assess the most relevant dimensions of the model, (3) to identify and assess measurement instruments and find evidence for the selected dimensions, and (4) to assess the relevance and applicability of the conceptualization and measurement of patient-centeredness in clinical practice and health services research.MethodsThis project is divided into four phases. First, a systematic review will be conducted to identify the constructs and dimensions of patient-centeredness. Second, experts (eg, researchers, clinicians, and patient representatives) will assess and prioritize the identified relevant dimensions using a Delphi survey. Third, the selected dimensions will be assessed regarding their operationalization, and the results will be summarized in a systematic review. Evidence of the measures will be assessed in a scoping review. Fourth, an expert workshop will be held. Experts will assess the results of the previous phases regarding the relevance and applicability of the conceptualization and measurement of patient-centeredness.DiscussionThis study will provide an integrative model of patient-centeredness based on the current literature. This model can be used to improve upon the comparability of research results. Through a detailed insight into the existence and evidence of measurement dimensions of patient-centeredness, existing gaps in this field will be shown. Finally, the expert assessment will show the relevance and feasibility of the concept and measures in clinical practice and health services research. Therefore, this study will contribute important knowledge to enhance future research on patient-centeredness and establish a foundation for its implementation.

Patient-centered care through internal and external participation in medical rehabilitation

Patient-centeredness is one of the most important quality and outcome criteria in health care. Health care organizations are continually searching for approaches that will enable them to establish sustainable patient-centeredness in their daily practice. Existing approaches frequently focus on interaction between patient and health care professional (external participation). However, this is often not sufficient; other elements, such as good teamwork among the health care professionals (internal participation), are also essential. The model of integrated patient-centeredness differentiates between these two participations forms, both of which are explored from a patient and health care professional perspective in our study. The aim of the study was to confirm the model from the viewpoint of staff and patients. To this end we conducted a multi-center cross-sectional study consisting of a patient and staff survey to assess internal and external participation and patient-centeredness. A total of 15 rehabilitation clinics were involved, with 272 staff members and 536 patients included in the final analysis. Although evaluation was positive (mainly slightly above the middle of the scale), there was potential for improvement for both types of participation. Internal and external rating differed between patients and health care staff, with the first group assessing internal significantly better and external lower than the second group. The low to middle correlation of both types, as well as the correlation and regression with patient-centeredness, confirmed the model of integrated patient-centeredness. The model underlines the importance of both participation forms for patient-centeredness, as well as their interdependence. Further studies are needed in order to verify the impact of internal and external participation, as well as that of further possible dimensions of patient-centeredness, on clinical and functional outcome criteria.

The ENDOCARE questionnaire guides European endometriosis clinics to improve the patient-centeredness of their care

How patient-centered are two included specialized endometriosis clinics relative to each other and how can they improve the patient-centeredness of their care? The validated ENDOCARE questionnaire (ECQ) reliably concluded that the adjusted overall patient-centeredness did not differ between the clinics, that each clinic was significantly more patient-centered for 2 out of 10 dimensions of patient-centered endometriosis care and that clinics 1 and 2 had to improve 8 and 13 specific care aspects, respectively. Patient-centered endometriosis care is essential to high-quality care and is defined by 10 dimensions. The ECQ was developed, validated and proved to be reliable in a European setting of self-reported endometriosis patients but had not yet been used at a clinic level for quality management. A cross-sectional survey was disseminated in 2011 to all 514 women diagnosed with endometriosis during a laparoscopy indicated for pain and/or infertility during a retrospective 2-year period (2009-2010) in two university clinics from two different European countries. In total 337 patients completed the ECQ (216 and 121 per clinic). Respondents had a mean age of 34.3 years. Three in four reported a surgical diagnosis of moderate or severe endometriosis and the majority reported surgical treatment by a multidisciplinary team. The ECQ assessed the 10 dimensions of patient-centeredness, more specifically whether the health-care performance, as perceived by patients, measured up to what is important to patients in general. The ECQ was completed by 337 respondents (response rate = 65.6%). Reliability and validity of the ECQ for use on clinic level were confirmed. Clinics did not differ in overall mean importance scores; importance rankings of the ECQ dimensions were almost identical. The overall patient-centeredness scores (PCS), adjusted for education level, did not discriminate between the clinics. However, the adjusted PCS for the dimensions 'clinic staff' and 'technical skills' were significantly better in clinic 1, whereas the dimensions 'physical comfort' and 'access to care' were significantly better in clinic 2. There were 8 (clinic 1) and 13 (clinic 2) targets identified for joint and cross-clinic improvement. Response rates were relatively high. Recall bias was the most important limitation and research in more clinics is needed to define the statistical discriminative value of the ECQ. European endometriosis clinics can use the validated ECQ for reliable assessment of their 'patient-centeredness', for comparison with others and for setting specific targets to improve the patient-centeredness of their endometriosis care, to plan interventions, and to evaluate their effectiveness. This work was funded by KU Leuven and European Network of Endometriosis (ENE), supported by the European Commission (Public Health Executive Agency). No competing interests are declared.

The patients' perspective on fertility care: a systematic review

Patient-centered reproductive medicine (PCRM) is important for quality of care, and this is increasingly being recognized. However, its scientific basis is unclear. The main research questions addressed in this review are: 'How has the patients' perspective on fertility care been examined (method and quality)?' and 'What is the perspective of patients in developed countries on fertility care?'. A systematic search of electronic databases was conducted and inclusion criteria with respect to eligibility and quality were applied. The methodology of the studies was critically appraised; the findings of the studies were synthesized and organized according to: patients' value clarification and assessment of service quality and dimensions of patient-centeredness. Additionally data on patient preferences and determinants of patients' perspective on care were collected. In 51 selected studies, patients' perspective on fertility care was examined with (few or many item) questionnaires and/or qualitative interviews. Significant methodological problems were observed. Fertility patients attached importance to seven out of eight dimensions of patient-centeredness (Picker institute) and two new dimensions 'fertility clinic staff' and 'skills' were developed. Overall, fertility patients want to be treated like human beings with a need for: medical skills, respect, coordination, accessibility, information, comfort, support, partner involvement and a good attitude of and relationship with fertility clinic staff. Patients' preferences between procedures and demographic, medical and psychological determinants of their perspective were defined. Fertility patients have 'human needs' besides their need for medical care. Evidence on PCRM is available but significant methodological limitations call for the development and validation of a European questionnaire.

Building a medical home around the patient: What it means for behavior.

A great deal has already been written on "patient-centered health care." This article aims to organize and make readily visible some of that work in context of the "patient-centered medical home" (PCMH). Patient-centered provider and patient behaviors are both required if PCMH is to become a successful innovation in practice. These behaviors are shown together on one page as dimensions of patient centeredness. A medical home that achieves patient-centered results will require different behaviors and attitudes from both patients and providers.