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Patient-centered communication (PCC) is a key indicator of healthcare quality and is critical to patient-centered care. The purpose of this study is to examine the trends in PCC over the past decade and determine if differences in PCC by subpopulation remain METHODS: We used nationally representative survey data from the Health Information National Trends Study (HINTS) to examine PCC. We conducted trend and multivariate regression analyses to understand the changes of PCC scores and differences in PCC by key sociodemographic groups.PCC reported among adults minimally increased with the largest increases in participants involved in making decisions regarding their healthcare. Participants who were non-Hispanic Black, older, had less than a high school education, or rural residents reported more positive perceptions of PCC CONCLUSION: Our findings indicate improvements to PCC over time. These findings also indicate that differences in patients' perceptions of PCC continue to persist and it's possible that personal expectations may influence a person's perception of the quality of PCC experienced PRACTICE IMPLICATIONS: This study highlights the continued need for provider education in patient emotional support and providing patients with the skills and resources to engage in high quality PCC.

AIM: The aim of the study was to investigate nurses' skill acquisition in Guided Self-Determination according to the Dreyfus model of skill acquisition and Patricia Benner's studies based on the same model.BACKGROUND: Globally, person-centred care is acknowledged as an essential aspect of quality in health care. To succeed with person-centred care methods and skills are necessary. Guided Self-Determination is a person-centred method developed in the field of nursing. The method represents a new way of skill acquisition requiring knowledge of how skills are acquired, unfolded and best supported in Guided Self-Determination.DESIGN: Qualitative interview study.METHOD: From January 2019 to August 2019, 16 nurses were interviewed about their experiences of learning and using Guided Self-Determination in three different gynaecological settings: cancer, endometriosis and sexual abuse. The study was registered with the Danish Data Protection Agency (file no.: VD-2018-445, I-Suite no.: 6700).RESULTS: The spectrum in Guided Self-Determination acquisition skills ranged from following schematical procedures in a rigorous way to an extended understanding of exploring and supporting the person-centred concept. Two main themes were identified: Elements in the transition of knowledge from theory to practice and Aspects associated with Guided Self-Determination skill acquisition.CONCLUSIONS: Nurses practised Guided Self-Determination at different levels. Quantity of practising Guided Self-Determination was not the only aspect determining rapid progression. The Dreyfus model lacked several explanatory components of skill acquisition, such as personal dispositions, preferences, motivation, personal values and context.

Patient-reported outcome measures (PROMs/PROM) are standardized, validated instruments used to measure the patient's perception of their own health status including their symptoms, functional wellbeing, and mental health. Although PROMs were initially developed as research tools, their use in clinical practice for shared decision-making and to assess the impact of disease and treatment on quality of life of individual patients has been increasing. There is a paucity of research exploring providers' perspectives on the clinical integration of PROMs. We sought to use a qualitative methodology to understand surgeons' perceptions of integrating PROMs into their clinical practices.Semistructured interviews were performed from November 2019 until August 2020. All interviews were recorded and transcribed verbatim. Thematic saturation was achieved after interviewing nine surgeons representing eight surgical specialties. Qualitative interview data were thematically analyzed using an inductive approach facilitated by Atlas.ti qualitative software.Forty seven unique codes were identified that fit into 21 themes that revealed five novel insights. Key insights included: (1) PROM data can modify surgical practice on an individual and institutional level, (2) Surgeon's view PROM clinical integration as a potential method of advancing patient-centered care, (3) There are various institutional processes that must be in place, including strong leadership and an integrative platform, to enable successful clinical PROM integration, (4) Surgeons appreciate challenges of integrating PROMs into surgical practice including risks of incorrect use or interpretation, and (5) A PROM platform must be adaptable to the diversity within surgery and to unique physician workflows.Surgeons perceived value from integrating PROMs into routine care to better inform patients during preoperative discussions and to help identify at-risk patients in the postoperative period. However, they also identified numerous barriers to the implementation of an integrated system for the routine use of PROMs in clinical practice and expressed concern about using PROMs to compare operative outcomes between surgeons. Based on this work, institutions that want to incorporate PROMs into surgical practice need a leadership team capable of supporting the change management necessary for effective integration and use a PROM platform that gives individual surgeons and surgical teams the ability to customize platforms for their unique practices.

Sickle cell disease (SCD) is a serious blood disorder leading to complex care needs. Comprehensive, multidisciplinary programs are ideally suited to deliver patient-centered care and address other relevant social determinants of health. Patients with SCD face many inequities in health care, further reinforcing the need for comprehensive care models to address these relevant issues. Comprehensive care models can be financially advantageous to institutions that care for vulnerable patients with SCD while simultaneously increasing care quality.

Purpose: This study analyzed the current status of and correlations between Korean medical students’ experiences and perspectives surrounding patient-centered medical education (PCME).Methods: A structured PCME questionnaire composed of three categories, understanding patients within social and cultural contexts, understanding patients’ individual health contexts through communication, and placement of patients at the center of medical education, was used. The students were stratified into pre-medical (Pre-med), medical (Med), and policlinic (PK) groups because of curriculum differences by grade. The χ2 test was applied to analyze the association between students’ experiences with and perspectives on PCME. A Cramer’s V of 0.200 was considered a large effect size for any association between experiences with and perspectives on PCME.Results: Among the respondents, 50.6% answered that they did not know about patient-centered medicine before the survey. With increasing school years went up from Pre-med to PK, fewer students agreed that PCME should be added to pre-clinical medicine curricula (p

PurposeThis study aimed to describe facilitators and barriers in terms of regulation and financing of healthcare due to the implementation and use of person-centred care (PCC).Design/methodology/approachA qualitative design was adopted, using interviews at three different levels: micro = hospital ward, meso = hospital management, and macro = national board/research. Inclusion criteria were staff working in healthcare as first line managers, hospital managers, and officials/researchers on national healthcare systems, such as Bismarck, Beveridge, and mixed/out-of-pocket models, to obtain a European perspective.FindingsCountries, such as Great Britain and Scandinavia (Beveridge tax-based health systems), were inclined to implement and use person-centred care. The relative freedom of a market (Bismarck/mixed models) did not seem to nurture demand for PCC. In countries with an autocratic culture, that is, a high-power distance, such as Mediterranean countries, PCC was regarded as foreign and not applicable. Another reason for difficulties with PCC was the tendency for corruption to hinder equity and promote inertia in the healthcare system.Research limitations/implicationsThe sample of two to three participants divided into the micro, meso, and macro level for each included country was problematic to find due to contacts at national level, a bureaucratic way of working. Some information got caught in the system, and why data collection was inefficient and ran out of time. Therefore, a variation in participants at different levels (micro, meso, and macro) in different countries occurred. In addition, only 27 out of the 49 European countries were included, therefore, conclusions regarding healthcare system are limited.Practical implicationsSupport at the managerial level, together with patient rights supported by European countries' laws, facilitated the diffusion of PCC.Originality/valueFragmented health systems divided by separate policy documents or managerial roadmaps hindered local or regional policies and made it difficult to implement innovation as PCC. Therefore, support at the managerial level, together with patient rights supported by European countries' laws, facilitated the diffusion of PCC.

BACKGROUND: The patients’ guide by the Batz Patient Safety Foundation promotes patients’ active participation in healthcare and a safe hospital experience. OBJECTIVE: The aim was to adapt the Spanish version of the guide to the local context and evaluate its acceptability from healthcare professionals’ and patients’ perspectives in two hospitals in Buenos Aires, Argentina. METHODS: This implementation study had a formative research phase to adapt the guide with input from individual interviews and focus group discussions. The intervention comprised training sessions for professionals on patient-centered care and use of the guide, the appointment of coordinators, and distribution of the guide. The adapted guide (section During Admission) was distributed in two hospitals. Before and after intervention, we administered surveys to explore acceptability, utility, and patient satisfaction. RESULTS: Findings from formative research showed that the Batz guide needed to be shortened and adapted to the local healthcare context Although professionals had agreed on the importance of clinical guidelines; after using the Batz guide, they found it complex and difficult to implement. Patients’ satisfaction with healthcare before and after implementing the guide did not differ significantly. Best scores were found in items related to availability of nurses, staff competence and staff kindness. A 78% of patients found the Batz guide useful. CONCLUSION: It is of critical importance to adapt the guide to the local culture, pilot it, and provide training to promote its implementation, improving acceptability and utility.

Contains fulltext : 287919.pdf (Publisher’s version ) (Open Access) BACKGROUND: In 2016, the International Consortium for Health Outcomes Measurement (ICHOM) defined an international consensus recommendation of the most important outcomes for lung cancer patients. The European Health Outcomes Observatory (H2O) initiative aimed to develop an updated patient-centered core outcome set (COS) for lung cancer, to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data as a means to drive value-based health-care. MATERIAL AND METHODS: An international, expert team of patient representatives, multidisciplinary healthcare professionals, academic researchers and pharmaceutical industry representatives (n = 17) reviewed potential outcomes generated through literature review. A broader group of patients/patient representatives (n = 31), healthcare professionals / academic researchers (n = 83), pharmaceutical industry representatives (n = 26), and health authority representatives (n = 6) participated in a Delphi study. In two survey rounds, participants scored the relevance of outcomes from a preliminary list. The threshold for consensus was defined as ≥ 70 % of participants scoring an outcome as 'highly relevant'. In concluding consensus-meeting rounds, the expert multidisciplinary team finalized the COS. RESULTS: The preliminary list defined by the core group consisted of 102 outcomes and was prioritized in the Delphi procedure to 64. The final lung cancer COS includes: 1) case-mix factors (n = 27); 2) PROs related to health-related quality of life (HRQoL) (n = 25); 3) clinical outcomes (n = 12). Patient-reported symptoms beyond domains included in the ICHOM lung cancer set in 2016 were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis. CONCLUSIONS: We will implement the lung cancer COS in Europe within the H2O initiative by collecting the outcomes through a combination of clinician-reported measures and PRO measures. The COS will support the adoption and reporting of lung cancer measures in a standardized way across Europe and empower patients with lung cancer to better manage their health care.

Person-centred care has the potential to improve the patient experience in the intensive care unit (ICU). However, the relationship between person-centred care perceived by critically ill patients and their ICU experience has yet to be determined.The aim of this study was to investigate the relationship between person-centred care and the ICU experience of critically ill patients.This study was a multicentre, cross-sectional survey involving 19 ICUs of four university hospitals in Busan, Korea. The survey was conducted from June 2019 to July 2020, and 787 patients who had been admitted to the ICU for more than 24 hours participated. We measured person-centred care using the Person-Centered Critical Care Nursing perceived by Patient Questionnaire. Participants' ICU experience was measured by the Korean version of the Intensive Care Experience Questionnaire that consists of four subscales. We analysed the relationship between person-centred care and each area of the ICU experience using multivariate linear regression.Person-centred care was associated with 'awareness of surroundings' (β = 0.29, p lt; .001), 'frightening experiences' (β = -0.31, p lt; .001), and 'satisfaction with care' (β = 0.54, p lt; .001). However, there was no significant association between person-centred care and 'recall of experience'.We observed that person-centred care was positively related to most of the ICU experiences of critically ill patients except for recall of experience. Further studies on developing person-centred nursing interventions are needed.

Flourishing reflects a child's ability to cope with stress and have positive relationships, which are critical to health and well-being. Pediatricians may increase flourishing in children through family-centered care, which is perceived as sensitive and responsive to specific child needs and family circumstances. The purpose of this study was to examine the relationship between family-centered care and flourishing in young children.Data from the 2019-2020 National Survey of Children's Health were used to examine the relationship among children aged 1-5 years (n=17,826). The relationship was explored using chi-square tests and sequential logistic regression modeling, controlling for family socioeconomics and adversity, race/ethnicity, child health, and other measures of healthcare quality. Analyses were conducted in January 2022.Approximately 82% of young children were flourishing. After adjusting for all variables, receipt of family-centered care was the only measure of quality health care associated with an increased likelihood of flourishing in young children (adjusted prevalence rate ratio=1.14; 95% CI=1.01, 1.29; p=0.02). Disparities in flourishing by child sex, race/ethnicity, parental education, income, and insurance type were mitigated after adjustment. However, a decreased likelihood of flourishing continued to be associated with having a special healthcare need (adjusted prevalence rate ratio=0.74; 95% CI=0.68, 0.82) and experiencing multiple adverse childhood experiences (adjusted prevalence rate ratio=0.78; 95% CI=0.66, 0.92).Expanding receipt of family-centered care may support flourishing and help to reduce disparities in flourishing during early childhood. Future research should evaluate the strategies to overcome barriers to delivering and receiving family-centered care, especially among children with special healthcare needs and children who experienced multiple adverse childhood experiences.

Background: At present, no real-world studies are available on different dupilumab dosing regimens in controlled atopic dermatitis (AD). The aim of this study was to clinically evaluate a patient-centered dupilumab dosing regimen in patients with controlled AD and to relate this to serum drug levels and serum biomarkers. Methods: Ninety adult AD patients from the prospective BioDay registry were included based on their dupilumab administration interval according to a predefined patient-centered dosing regimen. Group A (n = 30) did not fulfill the criteria for interval prolongation and continued using the standard dupilumab dosage (300 mg/2 weeks), group B (n = 30) prolonged dupilumab interval with 50% (300 mg/4 weeks), and group C (n = 30) prolonged dupilumab interval with 66%–75% (300 mg/6–8 weeks). AD severity score, patient-reported outcomes, serum dupilumab levels, and serum biomarkers were analyzed over time. Results: Disease severity scores did not significantly change over time during the tapering period in any of the groups. In groups B and C, the Numeric Rating Scale (NRS)-pruritus temporarily significantly increased after interval prolongation but remained low (median NRS-pruritus≤4). Median dupilumab levels remained stable in group A (standard dosage), but significantly decreased in groups B and C (24.1 mg/L (IQR = 17.1–45.6); 12.5 mg/L (IQR = 1.7–22.3)) compared with the levels during the standard dosage (88.2 mg/L [IQR = 67.1–123.0, p

Compare rates of identification of families with health-related social needs (HRSN) and connection to resources by targeted versus universal, pediatric clinic-based interventions.This observational cohort study included 1677 families that received care (January 2017-May 2020) at 8 pediatric medical homes in 3 states implementing Developmental Understanding and Legal Collaboration for Everyone (DULCE)-a universal, evidence-based intervention that addresses HRSN for families with infants. We divided the cohort into 2 groups using 4 common risk criteria in targeted programs serving families with infants; 862 families had no high-risk characteristics (Risk Criteria Absent [RCA]); 815 families had high-risk characteristics (Risk Criteria Present [RCP]). We compared both groups by prevalence of HRSN and connection to supports and estimated the performance of high-risk criteria to identify HRSN.DULCE identified 990 families with HRSN, compared to an estimated 274 families, if a risk-targeted approach had been used. More than half of RCA families had HRSN, 11% used resources at enrollment, and 42.5% accessed resources through DULCE. Simultaneously, 68.8% of RCP families had ongoing HRSN although 46.0% used resources at enrollment; 63.9% accessed additional resources through DULCE. Commonly used risk criteria had a sensitivity of 55.3% (95% confidence interval [CI], 52.2%-58.5%), specificity of 61.1% (95% CI, 57.2%-64.9%), positive predictive value of 68.8% (95% CI, 65.4%-72.0%), and negative predictive value of 46.9% (95% CI, 43.5%-50.4%).Risk criteria commonly used to identify families for targeted interventions are imperfect proxies for HRSN. Universal, medical home-based approaches can play a key role in supporting families with infants.

Challenges and trends, such as person-centred care, demographic shifts and technological advancements, are transforming oral health systems. Inclusive design and human-centred design are disciplines highly relevant and potentially instrumental to these oral healthcare transformations. This paper provides an overview of the definitions and characteristics of inclusive and human-centred design which centre on understanding people's multifaceted needs, expectations, behaviours and relationships, and engaging with diverse and often excluded populations. Design's broad capabilities are outlined across outcome and contribution types and the potential role of inclusive and human-centred design to oral health is explored by outlining its relevance to key transformational, societal and technological shifts. Finally, barriers and drivers to the adoption of inclusive and human-centred design in oral health are discussed around three themes: awareness and understanding of the role and value of design; disciplinary differences; and the wider healthcare systems context.

Ian P Smith,1,* Mirko Ancillotti,2,* Esther W de Bekker-Grob,3,4 Jorien Veldwijk2– 4 1Julius Center for Health and Primary Care, University Medical Center Utrecht, Utrecht, the Netherlands; 2Centre for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; 3Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, the Netherlands; 4Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, the Netherlands*These authors contributed equally to this workCorrespondence: Ian P Smith, Julius Center for Health and Primary Care, University Medical Center Utrecht, Str. 6.131, P.O. Box 85500 3508 GA, Utrecht, the Netherlands, Tel +31 88 75 69 616, Fax +31 88 75 554 84, Email i.p.smith@umcutrecht.nlPurpose: Studies assessing framing effects in discrete choice experiments (DCE) primarily focused on attributes related to mortality/survival information. Little is known about framing effects for other attributes in health-related DCEs. This study aimed to investigate how framing treatment outcome as effective, failure, or a combined frame impacts respondent choices and DCE outcomes.Patients and Methods: Three Bayesian D-efficient designed DCE surveys measuring preferences for antibiotic treatments were randomly distributed to a representative sample of the Swedish population aged 18– 65 years (n=1119). Antibiotic treatments were described using five attributes. Four attributes were static: Contribution to Antibiotic Resistance, Treatment Duration, Likelihood of Side-Effects, and Costs. A fifth treatment attribute was framed in three ways: Effectiveness, Failure Rate, or both. Mixed logit models were used to analyze attribute level estimates, importance value, and choice predictions.Results: Significant differences between the frames were found for the parameter estimates of the attributes of Treatment Duration and Likelihood of Side-Effects, but not Treatment Outcome which was the alternatively framed attribute. Contribution to Antibiotic Resistance and Costs were the most important attributes for all participants regardless of framing. Choice predictions for the “best option” antibiotic only slightly differed between the groups based on the frame seen (95.2– 92.4%).Conclusion: Our study showed that attribute framing can impact preferences regardless of the attribute’s importance value in alternative valuation. However, the practical implication of this effect may be limited. A theoretical discussion is needed to identify how researchers should accommodate and report any potential framing effect in their studies.Keywords: patient preferences, patient-centered care, DCE

Patient-centered medical home takes years to attain. Fifteen-to-eighteen percent of US primary care practices in 2008-2017 sought or maintained patient-centered medical home recognition. We conducted interviews with a stratified-random sample of 105 of these practices to determine why patient experience surveys were chosen. Fifty-one were using a Consumer Assessment of Healthcare Providers and Systems survey and 53 administering another patient survey. The 3 most common reasons were (1) to compare performance against other practices, which requires systematically collected data across large numbers of practices (ie, the Consumer Assessment of Healthcare Providers and Systems survey), (2) participation in an external patient-centered medical home program, and (3) survey administration cost. Leaders invested in a second patient survey for quality improvement needs.

Although metastatic breast cancer (MBC) is treatable, it is not curable and most patients remain on treatment indefinitely. While oncologists commonly prescribe the recommended starting dose (RSD) from the FDA-approved label, patient tolerance may differ from that seen in clinical trials. We report on a survey of medical oncologists' perspectives about treatment-related toxicity and willingness to discuss flexible dosing with patients.We disseminated a confidential survey via social media/email in Spring 2021. Eligible respondents needed to be US-based medical oncologists with experience treating patients with MBC.Of 131 responses, 119 were eligible. Physicians estimated that 47% of their patients reported distressing treatment-related side effects; of these, 15% visited the Emergency Room/hospital and 37% missed treatment. 74% (n = 87) of doctors reported improvement of patient symptoms after dose reduction. 87% (n = 104) indicated that they had ever, if appropriate, initiated treatment at lower doses. Most (85%, n = 101) respondents did not believe that the RSD is always more effective than a lower dose and 97% (n = 115) were willing to discuss individualized dosing with patients.Treatment-related side effects are prevalent among patients with MBC, resulting in missed treatments and acute care visits. To help patients tolerate treatment, oncologists may decrease initial and/or subsequent doses. The majority of oncologists reject the premise that a higher dose is always superior and are willing to discuss individualized dosing with patients. Given potential improvements regarding quality of life and clinical care, dose modifications should be part of routine shared decision-making between patients and oncologists.

Context Palliative care (PC) is associated with improved quality of life, survival, and decreased healthcare use at the end of life among lung cancer patients. However, the specific elements of palliative care that may contribute to these benefits are unclear. Objectives To evaluate the associations of PC and its setting of delivery with prescriptions of symptom management medications, advance care planning (ACP), hospice enrollment, and home health care (HHC) receipt. Methods Retrospective, cohort study of patients with advanced stage (IIIB/IV) lung cancer in the Veterans Health Administration (VA) diagnosed from 2007-2013; with follow-up through 2017. Propensity score methods were used with inverse probability of treatment weighting and logistic regression modeling, adjusting for patient and tumor characteristics. Results Among 23 142 patients, 57% received PC. Compared to non-receipt of PC, PC in any setting (inpatient or outpatient) was associated with increased prescriptions of pain medications (Adjusted Odds Ratio (aOR) = 1.63, 95% CI: 1.45-1.83), constipation regimen with pain medications (aOR = 2.04, 95% CI: 1.63-2.54), and antidepressants (aOR = 1.78, 95% CI: 1.52-2.09). PC was also associated with increased ACP (aOR = 1.52, 95% CI: 1.37-1.67) and hospice enrollment (aOR = 1.39, 95% CI:1.31-1.47), and decreased HHC (aOR = 0.79, 95% CI: 0.70-.90) compared to non-receipt of PC. Receipt of PC in outpatient settings was associated with increased prescriptions of pain medications (aOR = 2.54, 95% CI: 2.13-3.04) and antidepressants (aOR = 1.76, 95% CI: 1.46-2.12), and hospice enrollment (aOR = 2.09, 95% CI: 1.90-2.31) compared to receipt of PC in inpatient settings. Conclusions PC is associated with increased use of symptom management medications, ACP, and hospice enrollment, especially when delivered in outpatient settings. These elements of care elucidate potential mechanisms for improved outcomes associated with PC and provide a framework for a primary palliative care approach among non-palliative care clinicians.

This study aimed to evaluate whether utilizing additional cone beam computed tomography (CBCT) imaging has any effect on quality of life and healing outcome following periapical surgery compared with periapical radiographs (PR).The study was registered in ClinicalTrials.gov (NCT04333940). In this parallel group randomized controlled trial, 52 patients (88 teeth) with persistent apical periodontitis and periapical radiographic evidence of periapical lesion were randomly assigned to either PR or CBCT group. The primary predictor was the type of the imaging method (PR only or with additional CBCT). The primary outcome was patient's quality of life during the first week after periapical surgery and the secondary outcomes were duration of surgery and healing outcome at 12-month follow-up. Participants of both groups received periapical surgery based on the pre-surgical plan provided by the radiographic imaging methods. Quality of life (QoL) was assessed using Modified Shugars questionnaire. Radiographic analysis for healing was conducted using Molven's criteria and modified PENN 3D criteria. The categorical data between groups were analysed using the Chi-square test, whilst intragroup comparisons were analysed using the McNemar test. The average scores for each component of QoL (oral functions, general functions, pain, swelling and other symptoms), combined QoL scores (overall average of values of 13 variables) and analgesic usage on each day were calculated and analysed.At 12 months of follow-up, fifty patients were evaluated. Participants in PR group reported significantly more swelling on first three days compared with CBCT group. The analgesic use was higher in the PR group on 2nd and 3rd day (Mann-Whitney U test with Bonferroni correction; p .007). A significant difference in the limitation of general functions was observed at the second day (p .07) with the higher values in the PR group. The combined QoL score between the two groups was found to be non-significant. However, none of the patients experienced intraoperative complications or neurovascular exposure. The mean surgical time was lesser in the CBCT group (p .05). Radiographic healing revealed a success rate of 96.2% for the PR group and 95.8% for the CBCT group with no significant difference between the groups.Participants in the CBCT group experienced substantially less early postoperative swelling and limitation in general functions, in comparison with the PR group. However, preoperative CBCT had no effect on other QoL parameters and intraoperative complications in medium-risk patients. Furthermore, CBCT did not exhibit any added advantage over periapical radiography in terms of assessing healing outcome following endodontic microsurgery. CBCT offered surgically relevant anatomic information for pre-surgical planning and ensured the treatment rendition with a significantly reduced operative time.

Rationale, aims and objectives: Patient-centered care is considered a vital component of good quality care for breast cancer patients. Nevertheless, the implementation of this valuable concept in clinical practice appears to be difficult. The goal of this study is to bridge the gap between theoretical elaboration of “patient-centered care” and clinical practice. To that purpose, a scoping analysis was performed of the application of the term “patient-centered care in breast cancer treatment” in present-day literature. Method: For data-extraction, a literature search was performed extracting references that were published in 2018 and included the terms “patient-centered care” and “breast cancer”. The articles were systematically traced for answers to the following three questions: “What is patient-centered care?”, “Why perform patient-centered care?”, and “How to realize patient-centered care?”. For the content analysis, these answers were coded and assembled into meaningful clusters until separate themes arose which concur with various interpretations of the term “patient-centered care”. Results: A total of 60 publications were retained for analysis. Traced answers to the three questions “what”, “why”, and “how” varied considerably in recent literature concerning breast cancer treatment. Despite the inconsistent use of the term “patient-centered care,” we did not find any critical consideration about the nature of the concept, regardless of the applied interpretation. Interventions that are supposed to contribute to the heterogeneous concept of patient-centered care as such, seem to be judged desirable, virtually without empirical justification. Conclusions: We propose, contrary to previous efforts to define “patient-centered care” more accurately, to embrace the heterogeneity of the concept and apply “patient-centered care” as an umbrella-term for all healthcare that intends to contribute to the acknowledgement of the person in the patient. For the justification of measures to realize patient-centered care for breast cancer patients, instead of a mere contribution to the abstract concept, we insist on the demonstration of desirable real-world effects.

Factor XIII (FXIII) is a thrombin-activated protransglutaminase that plays a key role in blood clot formation. Congenital FXIII A-subunit deficiency represents a rare bleeding disorder that affects one in 2–3 million individuals worldwide and is treated with recombinant FXIII (rFXIII). However, due to the rarity of the disease, clinicians are often left to weigh individual variation in FXIII activity and/or symptoms to optimally guide dosing. Cases often become further complicated when patients experience refractory bleeding, which can be difficult to treat. This report describes an approach to rFXIII dosing in two patients who required deviation from standard protocols to maintain therapeutic FXIII troughs. We highlight limitations in our understanding of FXIII deficiency management, while also providing an example of the application of pharmacokinetic data to individualise therapy for improved outcomes. Finally, the case reminds us of the importance of patient-centered, cost-conscious care and multidisplinary teamwork in complex cases.

The Centers for Medicare and Medicaid Services mandate the provision of person-centered care (PCC), but there is limited evidence on how PCC impacts nursing home (NH) residents' care experiences. This study examined the relationship between n = 163 NH residents' ratings of satisfaction with care related to their preferences and their satisfaction with overall care. Residents with higher preference satisfaction ratings reported significantly higher levels of satisfaction with overall care. Using preference satisfaction ratings has the potential to improve PCC planning and delivery in nursing homes.

Objective: To understand the experiences of nurses assisting cancer patients, according to Harold Freeman´s principles of navigation. Method: A qualitative study conducted in a large public hospital in the State of São Paulo in December 2021. Six nurses were interviewed using a semi-structured script with questions about the care of cancer patients and their families. The data were submitted to content analysis with theoretical framework of Harold Freeman. Results: Five categories emerged from the statements: fluidity in care; integration between teams; bond with patients and families; competencies of care nurses in the navigation of cancer patients; valorization and facilities in team training. Conclusion: According to the categories observed, we can consider that the experiences of care nurses working in an oncology unit revealed the strengthening of navigation principles contributing to the care and minimization of barriers, which can facilitate and/or soften the therapeutic path of the cancer patient. RESUMEN Objetivo: Comprender las experiencias de enfermeros que asisten a pacientes con cáncer, según los principios de navegación de Harold Freeman. Método: Estudio cualitativo realizado en un gran hospital público del Estado de São Paulo en diciembre de 2021. Seis enfermeros fueron entrevistados utilizando un guión semiestructurado con preguntas sobre el cuidado de pacientes con cáncer y sus familias. Los datos fueron sometidos al análisis de contenido con el referencial teórico de Harold Freeman. Resultados: De los enunciados surgieron cinco categorías: fluidez en el cuidado; integración entre equipos; vínculo con pacientes y familias; competencias de los enfermeros asistenciales en la navegación de pacientes oncológicos; valoración y facilidades en la formación de equipos. Conclusión: De acuerdo con las categorías observadas, podemos considerar que las experiencias de los enfermeros asistenciales que actúan en una unidad de oncología revelaron el fortalecimiento de los principios de navegación contribuyendo al cuidado y minimización de barreras, lo que puede facilitar y/o suavizar el camino terapéutico del cáncer paciente. RESUMO Objetivo: Compreender as experiências de enfermeiras assistenciais aos pacientes oncológicos, segundo os princípios da navegação de Harold Freeman. Método: Estudo de abordagem qualitativa, realizado em hospital público de grande porte no interior do Estado de São Paulo no mês de dezembro de 2021. Foram entrevistadas seis enfermeiras por meio de roteiro semiestruturado com questões acerca do atendimento ao paciente oncológico e familiares. Os dados foram submetidos à análise de análise de conteúdo com referencial teórico de Harold Freeman. Resultados: Cinco categorias emergiram dos depoimentos: fluidez na assistência; integração entre as equipes; vínculo com pacientes e familiares; competências das enfermeiras assistenciais na navegação de pacientes oncológicos; valorização e facilidades no treinamento das equipes. Conclusão: De acordo com as categorias observadas, podemos considerar que as experiências de enfermeiras assistenciais que atuam em unidade oncológica revelaram o fortalecimento dos princípios de navegação contribuindo para o atendimento e minimização de barreiras, o que pode facilitar e/ou suavizar o trajeto terapêutico do paciente oncológico.

Introdução: Constituindo-se como elemento de avaliação na Unidade Curricular Relatório, este documento surge como parte fulcral do VI Curso de Mestrado em Enfermagem, em Associação, da Escola Superior de Saúde, do Instituto Politécnico de Setúbal. Objetivo: Descrever o projeto de intervenção profissional desenvolvido, bem como a aquisição e desenvolvimento das competências comuns e específicas de Enfermeiro Especialista em Enfermagem Médico-Cirúrgica – a Pessoa em Situação Crítica, e de Mestre em Enfermagem. Metodologia: Descrição e análise critico-reflexiva das atividades desenvolvidas no projeto de intervenção profissional. Desenvolvido com base na metodologia de projeto, “O Conforto do Silêncio: os efeitos do ruído na PSC”, remete-nos instantaneamente para a Teoria do Conforto de Kolcaba. Resultados: Os efeitos do ruído em contexto hospitalar não se limitam aos doentes, tendo impacto também em profissionais e familiares. Esses efeitos são notórios não só no bem-estar físico, mas também no psíquico e social. Demonstra-se ainda a aquisição de competências para obtenção do grau de mestre e posterior atribuição do título de enfermeiro especialista. Conclusão: As recomendações sobre ruído hospitalar dificilmente poderão ser atingidas nas atuais UCI. Contudo, cabe ao Enfermeiro ser agente humanizador dos cuidados e desempenhar um papel ativo quer na motivação dos pares e equipa multidisciplinar, quer na dinamização de estratégias que visem minimizar o ruído. Introduction: This Internship Report comes within the scope of the Report Curricular Unit, and appears as a core part of the VI Master's Course in Nursing, in Association, at the Escola Superior de Saúde, at the Polytechnic Institute of Setúbal. Objective: Describe the professional intervention project developed, as well as the acquisition and development of common and specific competences of a Specialist Nurse in Medical-Surgical Nursing – the Person in Critical Situation, and of a Master's Degree in Nursing. Methodology: Description and critical-reflexive analysis of the activities developed in the professional intervention project. Developed based on the design methodology, “The Comfort of Silence: the effects of noise on PSC”, instantly takes us back to Kolcaba's Theory of Comfort. Results: The effects of noise in a hospital context are not limited to patients, but also have impact on professionals and family members. These effects are notorious not only in terms of physical well-being, but also in terms of psychic and social well-being. It also demonstrates the acquisition of skills to obtain a master’s degree and subsequent attribution of the title of specialist nurse. Conclusion: The recommendations on hospital noise can hardly be achieved in the current ICU. However, it is up to the Nurse to be a humanizing agent of care and play an active role both in motivating peers and the multidisciplinary team, and in promoting strategies aimed at minimizing noise.

Objectives. To evaluate the effectiveness of a novel health care access program (ActionHealthNYC) for uninsured immigrants. Methods. The evaluation was conducted as a randomized controlled trial in New York City from May 2016 through June 2017. Using baseline and follow-up survey data, we assessed health care access, patient experience, and health status. Results. At baseline, 25% of participants had a regular source of care; two thirds had visited a doctor in the past year and reported 2.5 visits in the past 12 months, on average. Nine to 12 months later, intervention participants were 1.2 times more likely to report having a primary care provider (58% vs 46%), were 1.2 times more likely to have seen a doctor in the past 9 months (91% vs 77%), and had 1.5 times more health care visits (4.1 vs 2.9) compared with control participants. Conclusions. ActionHealthNYC increased health care access among program participants. Public Health Implications. State and local policymakers should build on the progress that has been made over the last decade to expand and improve access to health care for uninsured immigrants.

Apart from saving the lives of coronavirus disease (COVID-19) patients on mechanical ventilation (MV), recovery from the sequelae of prolonged MV (PMV) is an emerging issue.c METHODS: We conducted a retrospective study among consecutive adult COVID-19 patients admitted to an intensive care unit (ICU) in Kobe, Japan, between March 3, 2020, and January 31, 2021, and received invasive MV. Clinical outcomes included in-hospital mortality and recovery from COVID-19 in survivors regarding organ dysfunction, respiratory symptoms, and functional status at discharge. We compared survivors' outcomes with MV durations of14 days and ≤14 days.We included 85 patients with a median age of 69 years (interquartile range, 64-75 years); 76 (89%) patients had at least 1 comorbidity, 72 (85%) were non-frail, and 79 (93%) were functionally independent before COVID-19 infection. Eighteen patients (21%) died during hospitalization. At discharge, 59/67 survivors (88%) no longer required respiratory support, 50 (75%) complained of dyspnea, and 40 (60%) were functionally independent. Of the survivors, 23 patients receiving MV for14 days had a worse recovery from COVID-19 at discharge compared with those on MV for ≤14 days, as observed using the Barthel index (median: 35 [5-65] vs. 100 [85-100]), ICU mobility scale (8 [5-9] vs. 10 [10-10]), and functional oral intake scale (3 [1-7] vs. 7 [7-7]) (P 0.0001).Although four-fifths of the patients survived and50% of survivors demonstrated clinically important recovery in organ function and functional status during hospitalization, PMV was related to poor recovery from COVID-19 at discharge.

Patient-centered and family-centered care (PFCC) is widely recognized as integral to high-quality health-care delivery. The highly technical nature of critical care puts patients and families at risk of dehumanization and renders the delivery of PFCC in the intensive care unit (ICU) challenging. In this article, we discuss the history and terminology of PFCC, describe interventions to promote PFCC, highlight limitations to the current model, and offer future directions to optimize PFCC in the ICU.

The LGBTQIA+ communities experience distinct health disparities and inequities in health outcomes. Healthcare providers must be conscious of factors to facilitate optimal, person-centered care. This narrative briefly covers health disparities in the LGBTQIA+ community and posits strategies to promote inclusive care.Current literature and clinical best practices from several authoritative sources on LGBTQIA+-specific issues and gender-affirming care were reviewed. Sources included several LGBTQIA+-specific healthcare organizations, national healthcare provider organizations, and federal agency policy statements. Inclusive terminology and healthcare practices were included.Healthcare providers must educate themselves on caring for gender- and sexual orientation-diverse populations to optimize the health status of these communities. It is essential that providers examine their own potential biases and maintain an openness to learning about LGBTQIA+ communities.Healthcare providers have a responsibility to not only understand issues specific to LGBTQIA+ individuals but also advocate for these groups. As nurses, we must continue to support public health policies that seek to end disparities and ensure health equity for all.Rehabilitation nurses are caring for more diverse populations than ever before and must understand how to provide compassionate, individualized care. Although this article focuses on the LGBTQIA+ community, the principles discussed are applicable across all populations.

Part 1 of this essay argued that the root causes of primary care’s problems lie in (1) the low percent of national health expenditures dedicated to primary care and (2) overly large patient panels that clinicians without a team are unable to manage, leading to widespread burnout and poor patient access. Part 2 explores policies and practice changes that could solve or mitigate these primary care problems. Initiatives attempting to improve primary care are discussed. Diffuse multi-component initiatives—patient-centered medical homes (PCMHs), accountable care organizations (ACOs), and Comprehensive Primary Care Plus (CPC+)—have had limited success in addressing primary care’s core problems. More focused initiatives—care management, open access, and telehealth—offer more promise. To truly revitalize primary care, 2 fundamental changes are needed: (1) a substantially greater percent of health expenditures dedicated to primary care, and (2) the building of powerful teams that add capacity to care for large panels while reducing burnout. Part 2 of the essay reviews 3 approaches to increasing primary care spending: state-level legislation, eliminating Medicare’s disparity between primary care and procedural specialty reimbursement, and efforts by health systems. The final section of Part 2 addresses the building of powerful core and interprofessional teams.

Nursing home (NH) providers would benefit from adopting evidence-based measures for gathering and utilizing resident preference information in their daily care activities. However, providers face barriers when implementing assessment tools used to promote person-centered care (PCC). Although Agile methodology is not commonly used in NH settings, this case study shows how it can be used to achieve the goal of delivering preference-based, PCC, within a large NH. We present a road map for breaking down care processes, prioritizing, and implementing iterative plan, do, study, act cycles using Agile methodology to enhance group collaboration on quality improvement cycles, to achieve our goal of providing preference-based PCC. We first determined if care plans reflected each resident's important preferences, developed a method for tracking whether residents attended activities that matched their preferences, and determined if residents were satisfied that their preferences were being met. These efforts had positive effects throughout the NH particularly when COVID-19 limited visitors and significantly modified staff workflow. Specifically, Agile processes helped staff to know how to honor preferences during quarantines which necessitated a shift to individualized (and not group) approaches for meeting preferences for social contact, comfort, and belonging. The ready availability of preference-based reporting was critical to quickly informing new staff on how to meet residents' most important preferences. Based on lessons learned, we describe a developmental approach that other providers can consider for adoption. Implications of this work are discussed in terms of the need for provider training in Agile methodologies to support iterative improvements, the need for policies that reimburse providers for their efforts, and additional research around workflow processes.

It is commonplace that care should be patient-centered. Nevertheless, no universally agreed-upon definition of patient-centered care exists. By consequence, the relation between patient-centered care as such and ethical principles cannot be investigated. However, some research has been performed on the relation between specific models of patient-centered care and ethical principles such as respect for autonomy and beneficence. In this article, I offer a detailed case study on the relationship between specific measures of patient-centered care and the ethical principle of respect for autonomy. Decision Quality Instruments (DQIs) are patient-centered care measures that were developed by Karen Sepucha and colleagues. The model of patient-centered care that guided the development of these DQIs pays special attention to the ethical principle of respect for autonomy. Using Jonathan Pugh's theory of rational autonomy, I will investigate how the DQIs relate to patient autonomy. After outlining Pugh's theory of rational autonomy and framing the DQIs accordingly (Part I), I will investigate whether the methodological choices made while developing these DQIs align with respect for autonomy (Part II). My analysis will indicate several tensions between DQIs and patient autonomy that could result in what I call "structural paternalism." These tensions offer us sufficient reasons, especially given the importance of the ethical principle of respect for autonomy, to initiate a more encompassing debate on the normative validity of Decision Quality Instruments. The aim of the present paper is to highlight the need for, and to offer a roadmap to, this debate.

Background Nursing homes (NHs) are required to provide person-centered care, efforts often folded into broader culture change initiatives. Despite the known benefits of culture change, it is difficult to measure. This study aims to assess the criterion validity of the Preferences for Everyday Living Inventory (PELI) Implementation Indicator with other culture change measures. Methods Using data from Ohio-based NHs ( n = 771), logistic regression techniques demonstrated the relationship between the PELI Implementation Indicator and two validated culture change measures, the Resident Preferences for Care (RPC) and Certified Nursing Assistant (CNA) Empowerment scales. Results There was a significant relationship between the two scales and complete PELI implementation holding all other variables constant. The RPC and CNA Empowerment scales were significantly associated with complete PELI implementation. Discussion Findings suggest that the PELI Implementation Indicator can be used as a pragmatic indicator of a community’s adoption of person-centered care and culture change.

The functional medicine model of care is focused on patient-centered rather than disease-centered care. Patient-centered care incorporates the patient's voice or experience of their condition alongside conventional biological factors to provide a "more complete" account of health. PROMIS Global, an NIH-validated patient-reported outcome (PRO) measure that evaluates the health-related quality of life, can be incorporated within the functional medicine model of care to evaluate self-reported physical, mental and social well-being across various conditions and guide personalized management strategies. Proper incorporation of PROMIS Global into clinical care and research is warranted to expand the available evidence base.

Conducting high-quality clinical research is dependent on merging scientific rigor with the clinical environment. This is often a complex endeavor that may include numerous barriers and competing interests. Overcoming these challenges and successfully integrating clinical research programs into clinical practice settings serving rehabilitation outpatients is beneficial from both a logistical perspective (eg, supports efficient and successful research procedures) and the establishment of a truly patient-centered research approach. Leveraging our experience with navigating this research-clinical care relationship, this article (1) proposes the Patient-Centered Framework for Rehabilitation Research, a model for integrating patient-centered research in an outpatient clinical setting that incorporates a collaborative, team-based model encompassing patient-centered values, as well as strategies for recruitment and retention, with a focus on populations living with disabilities or chronic diseases; (2) describes application of this framework in a comprehensive specialty multiple sclerosis center with both general strategies and specific examples to guide adaptation and implementation in other settings; and (3) discusses the effect of the framework as a model in 1 center, as well as the need for additional investigation and adaptation for other populations. The 5 interconnected principles incorporated in the Framework and which prioritize patient-centeredness include identifying shared values, partnering with the clinical setting, engaging with the population, building relationships with individuals, and designing accessible procedures. The Patient-Centered Framework for Rehabilitation Research is a model presented as an adaptable roadmap to guide researchers in hopes of not only improving individual patients' experiences but also the quality and relevance of rehabilitation research as a whole. Future investigation is needed to test the Framework in other settings.

The functional medicine matrix provides us with an opportunity to understand how social determinants of health (SDOH) and health related social needs may be root causes and contributors to current health and illness among patients. The matrix also allows us to map and recognize the intersectionality of SDOH on exposures and behaviors that influence antecedents, triggers, mediators, lifestyle factors, and clinical imbalances. Incorporating SDOH into clinical evaluations helps uncover and address the complex factors that lead to health disparities in order to provide more optimal patient-centered care.

The challenges that Latin America faces in health are deeply related to others, such as access to clean water, the right to education, and housing. Health professionals that work in an environment where the population faces constant barriers to accessing care in the public health system or has limited resources to pay for it in a private sector will face an ethical dilemma, the question of how to honor the call to care for patients when there is not enough support system or infrastructure to do so. Within the schools of medicine and health sciences, the question is how to train students to face or resolve these conflicts. The social responsibility approach is a proposal that allows the alignment of education for health professionals and health systems to contribute to the creation of an effective, equitable, and sustainable system. The present article aims to discuss this problem from the importance of training health professionals, ethical and committed to their communities, that have the skills and attitudes to implement a patient-centered vision. The involvement of universities and training institutions of the next generation of health professionals cannot be postponed.

Patients' participation is part of patient-centeredness, but it is so far unclear whether providers in multidisciplinary tumor conferences (MTCs) with patient participation communicate in a patient-centered way. Our aim is to explore (a) to what extent providers ask questions to breast and gynecological cancer patients during case discussion in MTCs, (b) how providers respond to patients' expressions of emotions during case discussions, and (c) which patient- and context-related characteristics and responses are associated with patients' trust in the treatment team after the case discussion.This observational study included survey data and audio recordings of MTCs with patient participation at three breast and gynecological cancer centers. Providers' questions to patients and responses to patients' emotional expressions were coded using the Verona Coding Definitions of Emotional Sequences. The response can be explicitly or non-explicitly related to the emotion and space-reducing or space-providing. Multiple linear regression analysis was used to determine associations between providers' responses, patient- and context-related characteristics, and patients' trust in the treatment team after the case discussion.We analyzed 82 case discussions (77 breast, 5 breast and gynecological cancer patients). Providers asked a total of 646 questions, of which 86% were polar (yes/no). Providers gave 303 responses to a total of 230 emotional expressions by patients. Non-explicit responses were associated with more trust when they were space-providing, but with less trust when space-reducing.The frequency of providers' closed questions and space-reducing responses to emotions shows that patient-centered communication rarely takes place in MTCs with patient participation.

Objective. This study aimed to explore the effects of individualized nursing in patients with temporomandibular disorders (TMD). Methods. From June 2019 to April 2021, 80 patients with TMD were admitted to the First Affiliated Hospital of Wenzhou Medical University. Among them, 40 patients (control group, CG) received routine nursing and 40 patients (experimental group, EG) received individualized nursing. Functional exercise compliance, pain score, maximum mouth opening, nursing satisfaction questionnaire, self-rating anxiety scale, and self-rating depression scale were investigated. Results. From June 2019 to April 2021, 81 patients with TMD were admitted to the First Affiliated Hospital of Wenzhou Medical University. Among them, 40 patients (control group) received routine care and 41 patients (experimental group) received individual care. There were no significant differences in mouth opening and pain score between the two groups before surgery P > 0.05 , but there were significant differences in mouth opening and pain score between the two groups 3 weeks after surgery. Patients’ anxiety and depression were assessed by the SAS and SDS scores. Before nursing, the control group and experimental group P < 0.05 had no significant difference. After nursing, the score of both groups decreased P < 0.05 . However, the score was lower in the experimental group, compared to the control group P < 0.01 . Conclusion. In summary, individualized nursing can improve patients’ physical condition and reduce negative emotions and complications. In light of this, the study needs further verification by a large sample randomized controlled trial.

Purpose: Gender dysphoria is commonly conceptualized as a mental disorder in gender-diverse people who do not identify with the gender assigned to them at birth. Direct support for well-being tends to be delegated to the field of mental health (MH), whereas speech-language pathology (SLP) practice is charged with modifying gender-diverse people's voice and communication in the belief that well-being will improve as a byproduct. However, with the introduction of the minority stress model, gender dysphoria is now understood as the result of sociocultural processes of stigmatization, pathologization, coping, and resilience, and it is to be addressed by all professions providing transgender health services. The purposes of this tutorial are to examine practices in SLP in light of the current conceptualization of gender dysphoria and guide speech-language pathologists in their role in supporting the well-being of gender-diverse people. Method: We reviewed the SLP and MH literature in the topic area to compare the two disciplines' conceptualizations and approaches to professional support for gender-diverse people. Results: We propose a transdisciplinary, person-centered, and culturally responsive approach to SLP practice that directly attends to minority stress, microaggressions, coping skills, and resilience factors. Conclusions: It is not sufficient for speech-language pathologists to delegate support for well-being in gender-diverse people to MH practitioners. Rather, speech-language pathologists need to be proactive in taking responsibility for supporting their clients' well-being based on each individual clinician's knowledge, skills, and capacity to do so. We recommend addressing barriers and facilitators of gender-diverse people's well-being both within SLP as a professional culture and by adapting the clinician's own professional practice.

The medical home model aims to increase care coordination and health care quality. While the adoption of the model has been increasing, the role of U.S. acute care hospitals’ interorganizational linkages on adoption is yet to be explored. Using a national sample of hospitals throughout the United States, we examined what interorganizational linkage features are associated with medical home adoption of hospital-owned physician practices and assess the pattern of adoption by acute care hospitals between 2011 and 2019. A generalized estimating equation with binomial distribution was utilized to assess the association between interorganizational linkages and medical home adoption. Hospitals with structural linkages and institutional linkages were more likely to have adopted the medical home. Moreover, the likelihood of medical home adoption increased relative to an increasing number of interorganizational linkages. Medical home adoption and dissemination efforts may be more effective when focused on hospitals possessing interorganizational linkages, specifically those with structural linkages.

Background:Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs).Purpose:The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands.Methods:A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data.Results:Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%).Conclusions:Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation.Implications for practice:Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs.