Effective patient education and counseling are increasingly recognized as central to patient participation, shared decision making, and adherence to therapeutic regimens. While existing literature has emphasized individual communication skills and intervention design, less attention has been given to the institutional conditions that enable such practices to be sustained in routine care. This correspondence argues that adaptive institutional capacity constitutes a critical systemic foundation for effective patient education and counseling. Drawing on a systems perspective, we highlight how communication challenges are shaped by organizational structures, training models, and support mechanisms rather than individual clinician behavior alone. We further propose a conceptual roadmap for strengthening adaptive institutional capacity, beginning with the recognition of communication as a systemic issue and progressing toward sustainable training models, integration of patient education into care pathways, and the development of institutional learning cultures. By situating communication and counseling within adaptive institutional systems, this correspondence contributes to ongoing discussions in Patient Education and Counseling on how communication practices can be embedded more consistently, equitably, and sustainably in everyday health care.
INTRODUCTION: Patients seek support from online resources when facing a troubling urologic cancer diagnosis. Physician-written resources exceed the recommended 6-8th grade reading level, creating confusion and driving patients towards unregulated online materials like AI chatbots. We aim to compare the readability and quality of patient education on ChatGPT against Epic and Urology Care Foundation (UCF). MATERIALS AND METHODS: We analyzed prostate, bladder, and kidney cancer content from ChatGPT, Epic, and UCF. We further studied readability-adjusted responses using specific AI prompting (ChatGPT-a) and Epic material designated as Easy to Read. Blinded reviewers completed descriptive textual analysis, readability analysis via six validated formulas, and quality analysis via DISCERN, PEMAT, and Likert tools. RESULTS: Epic met the recommended grade level, while UCF and ChatGPT exceeded it (5.81 vs. 8.44 vs. 12.16, p < 0.001). ChatGPT text was longer with more complex wording (p < 0.001). Quality was fair for Epic, good for UCF, and excellent for ChatGPT (49.5 vs. 61.67 vs. 64.33). Actionability was overall poor but particularly lowest (37%) for Epic. On qualitative analysis, Epic lagged on all quality measures. When adjusted for user education level (ChatGPT-a and Epic Easy to Read), readability improved (7.50 and 3.53), but only ChatGPT-a retained high quality. CONCLUSIONS: Online urologic oncology patient materials largely exceed the average American's literacy level and often lack real-world utility for patients. Our ChatGPT-a model indicates that AI technology can improve accessibility and usefulness. With development, a healthcare-specific AI program may help providers create content that is accessible and personalized to improve shared decision-making for urology patients.
Compliance with physician recommendations among long-term hypertensive patients can be a chronic and difficult treatment problem. This study evaluated the relative effectiveness of additional patient education and psychosocial counseling in improving patient compliance. At a family practice clinic, 123 low income, rural, black hypertensive patients were pretested on several psychological characteristics and randomly assigned to one of three groups: vigorous, group patient education and family physician appointments; supportive, individualized psychosocial counseling and family physician appointments; or family physician appointments only, which was the baseline medical care. Intervention and follow-up each lasted three months, and the intervention was in addition to the patients' baseline medical care. Compliance was measured by: keeping follow-up appointments; bringing antihypertension medications to each appointment; consuming these medications; and diastolic blood pressure. Analysis of variance of group mean and change scores, t tests, and chisquare analysis indicated that neither additional patient education nor additional psychosocial counseling improved compliance or blood pressure control significantly better than regular family physician visits alone.
The aim of the study is to evaluate the effectiveness of Individualised Counselling Session (ICS) on Robotic Assisted Surgery to reduce stress and anxiety among parents of children undergoing Robotic Assisted Surgery. The objective was to assess the level of pre-operative stress and anxiety among the parents of children undergoing Robotic Assisted Surgery in selected surgical wards in experimental and control groups. A Quasi experimental study design and 50 samples were taken. The samples were selected by purposive sampling techniques, who fulfilled the sample criteria. The demographic variable and structured questionnaire were used for data collection. The descriptive and inferential statistics were used for data analysis with the help of SPSS software version 27. Out of 50 samples (25 each in experimental and control group) the experimental group RAS type pyeloplasty counts for 10(41.7%), Ureteric Reimplantation 4(16.7%), Bladder reconstruction surgery 5(20.8%), Mitrofanoff surgery 6(20.8%). Length of the stay for patient before surgery were 4-8 days in 12 patients (50%), 8-10 days in 11 patient (45.8%), 10-12 days in 2 patient (4.2%). Level of education of father who were included in the study were secondary education counts for 2(4.2%), Senior secondary education 7(29.2%), Graduation 16(66.7%) whereas level of education of mother who were included in the study were primary education counts for 3(12.5%), secondary education 4(12.5%), senior secondary 11(45.8%), graduation 7(29.2%) under the control group male were included in the study were 22(88%) and female were 3(12%).The RAS type pyeloplasty counts for 12(48%), Ureteric Reimplantation 4(16%), Bladder reconstruction surgery 3(12%), Mitrofanoff surgery 6(24%). Length of the stay for patient before surgery were 4-8 days in 10 patients (40%), 8-10 days in 13 patient (52%), 10-12 days in 2 patient (8%). Level of education of father who were included in the study were primary education counts for 2(8%), Senior secondary education 9(36%), Graduation 14(56%) whereas level of education of mother who were included in the study were primary education counts for 2(8%), secondary education 6(24%), senior secondary 10(40%), graduation 7(28%). Effectiveness of Individualised counselling Session (ICS) among parents were assessed with the help of structured tool APAIS and B-MEPS for anxiety and stress respectively in experimental and control group. In the experimental group in pre-test their Median was 1 and 26 in stress and anxiety respectively and after giving the Individualised Counselling Session (ICS) their post Test Score was Median 0.78 and 26 in stress and anxiety respectively. After apply the Wilcoxon Signed rank Test the p-value was significant i.e. < 0.001 for both stress and anxiety. The Z-value was -4.374 and -4.391in stress and anxiety respectively. In the control group in pre-test median was 1 and 25 in stress and anxiety respectively, and the post- test score was 0.78 and 26 in stress and anxiety respectively. After applying the Wilcoxon signed rank test the p-value was < 0.001 for stress and 0.412 for anxiety. It shows significantly increase in anxiety but not stress. The Z-value was -4.05 and -0.821 in stress and anxiety respectively. Therefore, it is concluded that there is effectiveness in experimental group after giving the counselling their stress and anxiety got reduced whereas in control group their stress got reduced but anxiety was persistent pre-operatively.
Complementary and alternative medicine (CAM) is increasingly utilized by cancer patients seeking additional ways to manage their health. Understanding how patient activation influences CAM usage and interest can guide more effective patient-centered care approaches. This study aims to explore the relationship between patient activation and the utilization and interest in CAM among cancer patients, employing both linear and non-linear regression analyses to assess these dynamics. A total of 195 cancer patients completed an online survey assessing their level of patient activation, CAM usage, and interest in CAM. Data were analyzed using linear and non-linear regression models to examine the effects of patient activation on CAM usage and interest. There were only weak associations found between patient activation, CAM use, and interest in CAM, and the discovered relationships were curvilinear with low explanatory and predictive values. Linear regression analysis revealed a very small and non-significant relationship between patient activation and CAM use (R² = .013), whereas a small but significant positive relationship was found between patient activation and interest in CAM (R² = .025). Non-linear regression analysis revealed a curvilinear relationship between patient activation and CAM use, which tended to increase at lower to moderate levels of patient activation and then decreased at higher levels (R² = .044). The findings suggest that the relationship between patient activation and CAM usage among cancer patients is complex and non-linear. Future studies should utilize larger, more representative samples and apply multivariable methods to gain a deeper understanding of the factors influencing CAM-related decision-making in oncology populations.
Therapeutic Patient Education (TPE), defined in the French Public Health Code, is part of the healthcare pathway, aiming to enhance autonomy, treatment adherence, and quality of life. TPE programmes are structured, person-centred processes helping patients with chronic diseases self-manage their health. For patients with rare diseases (RD) and their caregivers, specialised TPE is essential to anticipate lifelong disruptions and provide support in contexts of vulnerability and isolation. This qualitative study involved 23 one-hour semi-structured interviews with 12 RD adult patients and 11 adult caregivers in France between January and May 2023, recruited through RD networks and patient organisations. Interviews explored participation context, expectations, satisfaction, and difficulties. Data were analysed using NVivo to identify recurring themes. Participants reported improved understanding of their RD and treatments, psychological and social well-being, and autonomy through TPE. Key themes included preference for face-to-face sessions for human interaction, though remote sessions offered practical benefits. The study highlighted diagnostic odyssey, emotional impact of diagnosis, and need for psychological support. Challenges included recruitment biases, geographical barriers, and insufficient communication about TPE. Participants emphasised TPE's role in improving their acceptance and management of the disease, transforming relationships with healthcare providers and reducing isolation. TPE addresses medical and psychosocial needs of patients with RD and caregivers, enhancing participation and quality of life. Face-to-face sessions are preferred, but remote options improve accessibility. Given the qualitative design, heterogeneity of RD and recruitment bias, findings are not fully generalisable. Future efforts should improve communication, involve patient organisations, and integrate caregivers for holistic care.
To identify and synthesise existing literature describing barriers and facilitators to accessing and engaging with rheumatoid arthritis (RA) self-management information by non-native and ethnic minority groups. Four electronic databases were searched from inception to October 2024 and screened by two independent reviewers against the following prespecified inclusion criteria: 1. must include participants who are diagnosed with RA and non-English language speakers; 2. Had participants who were adults. 3. Adopt a qualitative study design. 4. Address the research question. Line-by-line coding of findings was carried out and was supported by NVivo software. Codes were then grouped to represent themes and sub-themes of key concepts commonly described across included studies. The themes were discussed and modified among the wider research team. The quality appraisal of the studies was performed by two independent reviewers using the CASP checklist, assessing methodological rigour and the validity of results to identify any potential sources of bias. A total of eight studies were included, and three main themes were identified: 1) A lack of awareness, knowledge and understanding of RA and its treatments (2) Mistrust of healthcare professionals (3) Uncertainties and concerns about the risks and benefits of treatments, impacting adherence CONCLUSION: The collective evidence suggests that ethnic minority and non-native patients encountered barriers to accessing information about RA, which likely impacts patients overall health and outcomes. Future work should focus on designing and delivering more acceptable educational resources for non-native and ethnic minority individuals with RA, to ensure that information is accessible and equitable. The development of culturally tailored, multi-format educational resources that integrate patient input and include visual aids on topics relevant to ethnic minority groups is required. In clinical practice, trained interpreters should be employed and communication strategies that respect cultural and linguistic needs adopted. Policy should ensure adequate funding for translation services and community-based health education. Further research should explore participatory design approaches to create interventions aligned with patient perspectives.
Effective physician communication is essential in cancer treatment consultations for helping patients understand associated risks such as side effects, complications, and quality-of-life impacts. In China, the growing use of internet health technologies has positioned text-based online medical consultations as a key platform for ongoing physician-patient interaction. Grounded in the patient-centered communication framework and the communication pathway model, this study developed and tested a hypothesized model in an online setting. The model examines relationships between physician empathy, physician dialogic risk communication, patient satisfaction, and patient compliance with physician recommendations, with patient risk understanding and patient emotional engagement as mediating factors. In Phase I, textual analyses of empathy and risk communication features from 102 participants were used to construct experimental stimuli. In Phase II, a 2 × 2 between-subjects experimental design was implemented with 280 participants. The design manipulated two independent variables: empathy (high vs. low) and risk communication (high vs. low), resulting in four experimental conditions. The high conditions reflected a higher level of expression for each variable, while the low conditions reflected a lower level of expression. These conditions were used to test the relationships specified in the hypothesized model. Confirmatory factor analysis assessed model fit, while structural equation modeling was used to examine the hypothesized pathways. Risk communication significantly predicted risk understanding (β =.596, p = .002), and empathy significantly predicted emotional engagement (β =.515, p = .002). Satisfaction was directly associated with compliance (β = 1.122, p = .002) and indirectly associated with empathy through risk understanding (β =.429, p = .023). The relationship between risk communication and satisfaction was fully mediated by risk understanding (β =.423, p = .002). This study identifies key physician communication factors influencing patient satisfaction and experience in Chinese online medical consultations concerning cancer treatment risks, enhancing the understanding of how physician communication affects patient outcomes. Findings inform message-framing strategies that incorporate empathy and dialogic risk communication through content, style, and language to better engage patients online. These skills can improve mutual understanding and enhance the quality of online cancer care consultations.
Diagnostic error, including delayed diagnosis, is a significant threat to patient safety. While much research has focused on clinical and system-level contributors to diagnostic delay, less is known about patient perspectives, particularly regarding the emotional and psychological impacts. We conducted in-depth, narrative interviews with 23 patients who self-reported experiencing a delayed diagnosis in one of five medical conditions: preeclampsia, myocardial infarction, ankylosing spondylitis, sepsis, and lung cancer. Participants were recruited via online patient communities and advocacy organizations. Interviews explored diagnostic trajectories, barriers to timely diagnosis, and the emotional, financial, and physical impacts of delay. Transcripts were thematically coded and analyzed to identify key themes. Patients described diverse diagnostic journeys, but the most salient theme involved the profound emotional impact of delayed diagnosis. Three major themes emerged: 1) nearly all participants reported feeling dismissed or not taken seriously by medical professionals, leading to frustration, anger, and self-doubt; 2) receiving a diagnosis brought relief and validation, affirming patients' experiences and enabling more informed decision-making; and 3) despite eventual validation, many patients experienced long-term emotional consequences of delayed diagnosis, most notably mistrust in the healthcare system and reluctance to seek future care. These impacts were observed across both acute and chronic conditions and among patients of different ages and backgrounds. The emotional and relational dimensions of delayed diagnosis are of primary importance to patients and can have lasting effects on trust and engagement with healthcare. Patient-centered strategies that prioritize validation, effective communication, and partnership in the diagnostic process are essential for reducing harm. Efforts to address diagnostic safety should incorporate patient perspectives to foster more empathetic and trustworthy healthcare systems.
Palliative care (PC) patients and families have diverse psychosocial needs. Support in this context is multidimensional. A tiered support framework could enable PC professionals to address these needs effectively. This study presents part of a research initiative to develop and evaluate a tiered model of psychosocial support in PC for adult patients. The current phase of the project focuses on enhancing the preliminary model in cancer care. The objective was to assess how PC patients and professionals would develop the applicability of the framework. A qualitative study using participatory research events with the World Café method was conducted. Participants were recruited in collaboration with a cancer centre and professional and patient societies. The eligible participants were patients with metastatic cancer and professionals with experience in caring for them. The SWOT analysis facilitated data collection and, with the Consolidated Framework for Implementation Research, guided abductive analysis. Five research events, onsite and online, with 44 participants (10 patients and 34 professionals) were conducted. From the perspectives of patients and professionals, the strengths and opportunities of the framework's applicability lie in the quality and delivery of care, while the weaknesses and threats lie in its comprehensiveness, resources, care delivery, and skills. To improve applicability, the framework's description should be refined, and factors like care quality, systemic issues, environment, individuals, implementation, and collaboration need consideration. The evaluated model demonstrates potential to improve care quality, service implementation, and organisational development for delivering psychosocial support in cancer PC. Our results provide justification and valuable information for further development. Implementation will require leadership and understanding of complex systems from all involved. The framework may offer structure for professionals to provide adequate support to patients and their families. It is essential to ensure a well-managed implementation of the framework.
While healthcare providers' use of patient-centered communication (PCC) is associated with positive outcomes like perceptions of trust and social support for patients, uncertainty may affect this relationship, especially during prenatal care. The purpose of this study, drawing upon the pathways from communication to outcomes model, was to determine whether trust mediates the relationship between PCC and informational support, and whether uncertainty moderates the relationship between PCC and informational support, PCC and trust, and trust and informational support among pregnant patients when communicating with their obstetrician/gynecologists (OB/GYNs). The study consists of a cross-sectional, correlational design. U.S. pregnant women (N = 549) were recruited via Prolific to complete an online survey inquiring about communication with and perceptions of their OB/GYNs during prenatal visits. Results were analyzed using a moderated mediation model. Patient-centered communication was positively associated with trust. Trust was positively associated with informational support and significantly mediated the relationship between PCC and informational support at low and moderate uncertainty levels. Uncertainty significantly moderated all three relationships. At lower levels of uncertainty, the relationships between PCC and trust, and trust and informational support were stronger than at higher levels of uncertainty; however, the relationship between PCC and informational support was stronger at higher levels of uncertainty. The findings indicated trust mediated the relationship between PCC and informational support. The results also indicated that pregnancy-related uncertainty functioned as a boundary condition, moderating the strength of the associations between PCC and trust and between trust and informational support, underscoring the importance of considering uncertainty in prenatal communication. OB/GYNs can engage in PCC behaviors like explaining information in a clear manner and attending to patient emotions. They can also complete communication skills training in PCC, and consider the uncertainty levels of their patients.
This study examined how Korean cancer patients and family members exhibit internalized self-regulation that contributes to their limited participation in medical consultations and reluctance to engage in decision-making. The research question focused on identifying structural and cultural factors that shape patient passivity in cancer-related physician-patient communication. A qualitative study was conducted using semi-structured, in-depth interviews. Data were analyzed thematically following Braun and Clarke's approach to identify recurrent patterns and emergent themes. A total of 30 interview participants were selected. Fifteen patients with cancer participated in the study, as well as fifteen family members who care for cancer patients (26 women and 4 men; ages 30-79). Inclusion criteria were being diagnosed with cancer, having received treatment in a university-affiliated hospital, and the ability to communicate in Korean. No restrictions were imposed regarding cancer type or stage. The analysis revealed three overarching dimensions of internalized self-regulation shaping patients and caregivers' reluctance to actively participate in communication: (1) self-regulation driven by an information gap, encompassing trust in physician expertise and self-doubt regarding medical knowledge; (2) internalized time pressure, reflecting patients and caregivers' perceptions of physicians' busyness and reluctance to extend consultations; and (3) self-censorship rooted in the medicine-personal divide, whereby patients and caregivers distinguished between acceptable medical questions and those relegated to the personal domain. These patterns illustrate how social authority, clinical structures, and cultural meanings of cancer reinforce patients' passivity in decision-making. Korean cancer patients and their family members often regulate their own participation in physician-patient communication through self-doubt, deference, and self-censorship, leading to limited involvement in decision-making. To enhance patient-centered care, clinicians should provide clear information early, explicitly invite questions, and foster a supportive consultation environment. In addition, both patients and physicians should receive training programs that ensure adequate medical information and facilitate effective communication.
Despite the importance of effective communication between nurses and parents/caregivers to support the safety of pediatric patients, barriers to this communication exist between nurses and caregivers who use a language other than English (LOE). A concept analysis was conducted to develop a conceptual definition of effective communication between nurses and caregivers of pediatric patients who use an LOE, which has not previously been defined. A concept analysis was completed using Walker and Avant's method. Articles published between 2020 and 2025 were identified using PubMed, CINAHL Complete, and Web of Science. Of the 310 identified articles, 32 were included. Effective communication between nurses and caregivers of pediatric patients who use an LOE is defined as "the frequent exchange of information between a nurse and caregiver of a pediatric patient in the caregiver's preferred/primary language other than English through professional language services that is reinforced by supplemental materials, is enhanced by nonverbal communication, and exhibits therapeutic communication techniques." Antecedents include early identification of caregivers' language preferences, access to professional language services, positive nurse-caregiver interpersonal relationships, and nursing education and training. Consequences include caregiver participation and engagement in care, caregiver understanding and comprehension, caregiver satisfaction, and safe, quality, equitable care. Findings provide future directions for research to achieve a comprehensive understanding of the complexity and uniqueness of communication between nurses and caregivers of pediatric patients who use an LOE, which can then guide interventions aimed at improving nurse-caregiver communication and promoting safe, quality, equitable care. A conceptual definition enables further advancement of the concept through generation of an operational definition, instrument development, and measurement tools, thereby permitting identification of the concept in clinical practice. The conceptual definition can also be used for theory construction or embedded within a preexisting theory to advance nursing theory.
BACKGROUND: Patients recall less than half the information provided to them by their physicians. AIMS: The aim of this study was to use quality-improvement (QI) techniques to enhance patient understanding of diagnosis, management and follow-up at the end of the office visit. METHOD: QI techniques including stakeholder analysis, process mapping and plan-do-study-act (PDSA) cycles were used in a pilot study in an outpatient endocrinology clinic specialising in bone disease. The impact of these interventions was evaluated by pre- and post-intervention patient surveys that included qualitative and quantitative data. RESULTS: A team of endocrinology fellows and faculty with expertise in QI developed a series of tools to encourage conversation and interaction during the encounter and to serve as a reference for patients to take home through five PDSA cycles. The tools were iterations of written materials provided to patients at the end of the clinical encounter. In each cycle, the tools were modified according to feedback from patients and providers. Ninety-three patients participated in this study. Patients were surveyed after the implementation of two of the five cycles. Compared with pre-intervention, modifications during the two cycles were associated with a non-significant increase in patients' understanding of the reasons for testing (from 64% to 80% and 75%); management plan (from 61% to 86% and 79%); and future follow-up plans (from 64% to 86% and 81%); P > 0.05 for all three outcomes. Improvement was not seen in patients' knowledge of their diagnoses (from 74% to 73% and 70%; P > 0.05). CONCLUSION: This pilot study shows how QI tools can be used for creating and initiating system improvements aimed at enhancing patient education and counselling.
Motivational interviewing (MI) is a patient-centered communication approach that supports health behavior change; yet, its integration into undergraduate medical curricula remains inconsistent. Combined learning models that comprise face-to-face instruction with structured web-based components may strengthen MI training, but evidence supporting their effectiveness among medical students, particularly in Asian contexts, is limited. This study evaluated the impact of a combined MI educational model on final-year medical students' MI knowledge, confidence, and application in real patient encounters during clinical rotations. This study used a sequential explanatory mixed methods design. The quantitative component used a before-and-after study to evaluate changes in MI knowledge and confidence among final-year medical students enrolled in an Ambulatory Care course in 2024. All 130 students participated in a 2-hour interactive MI workshop, and 120 completed pre- and postintervention questionnaires assessing MI knowledge and self-reported confidence. Students were also provided access to a 3-hour web-based MI learning module, and learning-management system analytics were used to track engagement. The qualitative component consisted of semistructured interviews with 12 purposively selected students, conducted to explore their experiences applying MI during clinical encounters. Quantitative data were analyzed using paired-samples t tests, and qualitative data were analyzed using inductive conventional content analysis. Findings from both components were integrated during interpretation to provide a comprehensive understanding of the educational intervention. Students demonstrated a significant improvement in MI knowledge following the educational intervention (pretest mean 8.87, SD 2.69; posttest mean 15.04, SD 2.99; t₁₁₉=-18.45; P<.001; η²=0.74). After the workshop, 96.9% (126/130) of students reported applying MI with patients, and 92.3% (n=120) agreed that the combined learning approach was adequate for supporting clinical use. Learning analytics data showed that 76.9% (n=100) of students enrolled in the web-based MI module, and 51% (n=51) completed all lessons. Students most frequently applied MI when counseling patients with diabetes, hypertension, and dyslipidemia, especially related to diet, physical activity, and medication adherence. Interview findings indicated that students mainly used brief MI, were most comfortable with engaging and focusing, and developed greater empathy, confidence, and patient-centered communication skills. Challenges included limited time during consultations, clinical workload, and difficulty applying all MI processes to complex cases. A combined MI learning approach integrating a short workshop with a web-based course was associated with higher MI knowledge scores and greater self-reported confidence among students, as well as reported use of MI-informed communication strategies during clinical encounters. Students perceived MI as a practical and ethically grounded communication approach that can enhance patient engagement, particularly in the management of chronic diseases. Introducing MI training longitudinally through a spiral curriculum, with opportunities for repeated practice and reinforcement, may help strengthen behavior-change communication competencies in undergraduate medical education.
Tobacco smoking is a leading preventable cause of pregnancy complications with serious long-term impacts on women and babies. This update is needed to incorporate new evidence and ensure that guidance on psychosocial interventions in pregnancy remains current for policy and practice. To assess the effects of psychosocial interventions provided to support pregnant women who are currently smoking or have recently quit, on smoking abstinence, continued postpartum abstinence, and infant outcomes. We searched Embase, MEDLINE, PsycINFO, four other databases and two trial registers, together with reference checking, citation searching, and contact with study authors to identify studies that are included in the review. The latest search date was November 2025. We included randomized controlled trials, cluster-randomized trials, and quasi-randomized controlled trials in pregnant women who smoked cigarettes or have recently quit, comparing psychosocial interventions (counseling, health education, feedback, social support, incentives, exercise) with usual care, less intensive interventions, or alternative interventions. We excluded studies on other forms of tobacco (e-cigarettes, smokeless tobacco), environmental tobacco smoke exposure, and those aimed outside of pregnancy (e.g. postpartum interventions). The critical outcome was self-reported and/or biochemically validated smoking abstinence in late pregnancy. The important outcomes included: smoking abstinence from zero to five months postpartum; mean birthweight; low birthweight (< 2500 g); preterm births (< 37 weeks); stillbirths; and neonatal intensive care unit (NICU) admissions. We used the Cochrane Risk of Bias tool 1. We synthesized results for each outcome using random-effects meta-analysis where possible. Where this was not possible, we have presented narrative summaries. We used GRADE to assess the certainty of evidence for main outcomes, including smoking abstinence in late pregnancy, low birthweight, preterm birth, mean birthweight, stillbirth, and NICU admissions. We included 127 studies (including 145 study arms) with 47,361 participants. Smoking abstinence during late pregnancy All psychosocial interventions, compared with all comparator types, probably result in an important increase in the likelihood of smoking abstinence during late pregnancy (RR 1.41, 95% CI 1.30 to 1.54; I² = 47%; 117 studies, 33,694 participants; moderate-certainty evidence) and in the early postpartum period (0 to five months) (RR 1.33, 95% CI 1.18 to 1.50; I² = 28%; 42 studies, 11,977 participants; moderate-certainty evidence). Similar effects were observed for counseling compared to usual care (RR 1.51, 95% CI 1.26 to 1.82; I² = 51%; 32 studies, 12,920 participants; moderate-certainty evidence) and financial incentives compared to alternative interventions (RR 2.03, 95% CI 1.38 to 2.98; I² = 58%; 7 studies, 1837 participants; moderate-certainty evidence). Health education compared with usual care may result in an important increase in the likelihood of smoking abstinence during late pregnancy (RR 1.62, 95% CI 1.22 to 2.14; I² = 0%; 10 studies, 2137 participants; low-certainty evidence). Similar effects were observed for feedback compared to usual care (RR 2.17, 95% CI 0.79 to 5.92; I² = 54%; 4 studies, 442 participants; low-certainty evidence) and social support compared to less intensive interventions (RR 1.21, 95% CI 0.93 to 1.58; I² = 0%; 7 studies, 781 participants; low-certainty evidence). Exercise compared to usual care probably results in little to no difference in the likelihood of smoking abstinence during late pregnancy (RR 1.20, 95% CI 0.72 to 2.01; 1 study, 785 participants; moderate-certainty evidence) and the evidence was very uncertain about the effect of active compared to passive dissemination of a smoking cessation on the likelihood of smoking abstinence during late pregnancy (RR 1.63, 95% CI 0.62 to 4.32; 1 study, 194 participants; very low-certainty evidence). Infant outcomes All psychosocial interventions, compared with all comparator types, may result in an important increase in the mean birthweight of infants (MD 56.90, 95% CI 35.30 to 78.51; I² = 22%; 31 studies, 13,726 participants; low-certainty evidence) and an important decrease in the likelihood of infants born with low birthweight (< 2500 g) (RR 0.82, 95% CI 0.73 to 0.94; I² = 0%; 20 studies, 10,190 participants; low-certainty evidence). The evidence was very uncertain about the effect of psychosocial interventions compared with all comparators on the likelihood of preterm births (RR 0.96, 95% CI 0.82 to 1.13; I² = 21%; 23 studies, 11,580 participants; very low-certainty evidence). There is probably little to no difference between psychosocial interventions and all comparators in the likelihood of stillbirth (RR 1.11, 95% CI 0.72 to 1.73; I² = 0%; 10 studies, 7481 participants; moderate-certainty evidence). All psychosocial interventions, compared with all comparators, may result in an important decrease in the likelihood of infants being admitted to the NICU immediately after birth (RR 0.84, 95% CI 0.70 to 1.01; I² = 0%; 12 studies, 3584 participants; low-certainty evidence). Health equity Half of the studies included women from disadvantaged backgrounds, including 11 studies involving ethnic minorities and four involving indigenous communities. Few studies examined whether intervention effects differed across population groups, leaving insufficient evidence to determine how interventions might be tailored to improve effectiveness in priority populations. Certainty of evidence Our confidence in the evidence is limited due to study limitations and imprecision. Several studies were unclear regarding random sequence generation and allocation concealment. For some outcomes, the 95% confidence intervals crossed our thresholds for important effects, leading to downgrading for imprecision. Counseling and financial incentives probably support women to stop smoking, while health education, feedback, and social support may support women to stop smoking in late pregnancy, by an amount likely to be important. Psychosocial interventions may also reduce the proportion of infants born with low birthweight, increase mean birthweight, and reduce the number of infants admitted to NICU. These findings were not evident in ethnic minority or Indigenous populations. This Cochrane review was funded (partly) by the 2021 MRFF Maternal Health and Healthy Lifestyles (2022138), NHMRC Leadership Fellowship (GNT2025437), and NHMRC Investigator Grant (GNT2009612). Protocol (1998) https://doi.org/10.1002/14651858.CD001055 Original review (1999) DOI: 10.1002/14651858.CD001055 (this first version of the review is not available in the Cochrane Library) Review update (2004) https://doi.org/10.1002/14651858.CD001055.pub2 Review update (2009) https://doi.org/10.1002/14651858.CD001055.pub3 Review update (2013) https://doi.org/10.1002/14651858.CD001055.pub4 Review update (2017) https://doi.org/10.1002/14651858.CD001055.pub5.
To explore the needs and perspectives of patients and informal caregivers on a patient academy designed to support self-management through nursing-skill education. An exploratory, qualitative study with semi-structured interviews was conducted with 15 patients and 10 informal caregivers in a teaching hospital in the Netherlands. The interviews focused on experiences of performing nursing skills at home, perspectives on a patient academy for nursing skills and perspectives on patient education and self-management. Data analysis followed the steps of thematic analyses by Braun & Clark, to identify patterns within the interviews. Two themes emerged. The first theme, patients independence versus healthcare shortage, reflected varying attitudes towards a patient academy for nursing skills. The second theme addressed the needs of patients and informal caregivers for supporting self-management in a patient academy. The two subthemes within the latter one were: patient-centred care as a prerequisite and the supporting roles of healthcare professionals. In general, patients and informal caregivers were positive about self-management support within a patient academy for nursing skills, although their perspectives may vary. Patient-centred care and the supporting roles of healthcare professionals are crucial for successful implementation. This indicates that such an academy can be a promising intervention to support self-management in the home setting. To support self-management, patient academies need to personalize learning to patients' abilities, experiences and environments, while ensuring that healthcare professionals can fulfil diverse supportive roles. Training staff to act as experts, educators, communicators and coaches is essential for successful implementation.
As Patient-Reported Outcome Measures (PROMs) become integrated into clinical care, interest grows in identifying effective visualization formats. Evidence on formats supporting user preference and comprehension remains limited. Moreover, communication of uncertainty around predicted PROMs remains underexplored. This review evaluates quantitative studies on PROM visualization across clinical domains, focusing on observed past and current scores as well as predicted scores at individual and group levels. This review followed PRISMA guidelines and was registered in PROSPERO (CRD42024505034). Systematic searches of PubMed, Scopus, and Web of Science were conducted for quantitative studies published between 2014 and 2024, assessing user preferences and comprehension for the visualization of PROMs. Two independent reviewers screened articles, extracted data, and assessed study quality using the Mixed Methods Appraisal Tool (MMAT). Data were synthesized descriptively according to outcome and visualization type. Thirteen of the 7973 identified studies met inclusion and quality criteria. Seven studies assessed preferences, and seven studies assessed comprehension of visualization formats. For individual-level data, bar charts were preferred over line graphs in three studies, and heat maps in one study; for group-level data, two studies found pie charts preferred over bar charts and icon arrays. For comprehension, bar charts and line graphs were generally well understood, with accuracy ranging from 49 to 100% among patients and 90-100% among clinicians for individual-level data. For group-level data, pie charts were correctly interpreted by 52-95% of the population. One study assessed visualization of predicted PROMs, which patients found difficult to interpret. Preferences and comprehension of PROM visualizations vary by format, data type, and users. While bar charts, line graphs, and pie charts are preferred, no one-size-fits-all approach exists. Visualization of predicted outcomes remains underexplored. Future research should study preferences for and comprehension of predicted PROM visualizations and apply user-centered design to support clinical decision-making.
This study reexamines patient-provider communication difficulties that have traditionally been attributed to patients' low health literacy, highlighting instead the role of epistemic injustice-structural and epistemological imbalances that shape whose knowledge is considered credible and whose experiences are understood. Adopting a conceptual and theoretical approach, this study reviews previous studies on health literacy and its limitations, introduces Miranda Fricker's framework of epistemic injustice, and reinterprets qualitative studies on patient-provider communication. The analysis focuses on two forms of epistemic injustice-testimonial and hermeneutical-and incorporates the related concepts of epistemic legitimacy and epistemic asymmetry. Findings suggest that communication breakdowns often labeled as "health literacy deficits" are more accurately understood as manifestations of epistemic injustice. Testimonial injustice arises when patients' accounts are preemptively discredited due to negative identity prejudice, resulting in credibility deficits. Hermeneutical injustice occurs when patients lack the interpretive resources needed to articulate or understand their experiences, leading to structural exclusion from meaning-making processes. These dynamics reflect systemic power asymmetries in which healthcare providers disproportionately control epistemic legitimacy, constraining patients' ability to speak, be heard, and be understood. Reframing communication difficulties through the lens of epistemic injustice reveals that these barriers often stem not from patients' cognitive limitations but from structural biases and unequal epistemic power in healthcare. Achieving epistemically just communication requires recognizing patients as epistemic agents whose voices and silences are equally meaningful and credible. Addressing epistemic injustice in healthcare demands interventions at clinical, educational, and organizational levels, including fostering epistemic humility, creating narrative spaces for patient expression, incorporating patient narratives into medical records, promoting peer support, and enhancing organizational health literacy.
Shared decision-making (SDM) is central to person-centred care, and particularly critical in oncology. Yet, its clinical implementation remains inconsistent. A strong theoretical foundation is essential for developing and sustaining effective SDM practices. Formal representation of theories enhances clarity and testability, enabling the accumulation of reliable evidence to support implementation. We systematically reviewed SDM models in oncology and formally mapped the constructs proposed, their definitions and operationalization, and the hypothesized relationships among them. Peer-reviewed articles describing SDM models in oncology were searched in PubMed, Embase, Web of Science, PsycINFO, CINAHL, and the Cochrane library. Constructs, definitions, and interrelationships were extracted and visualised using an ontology-based modelling system. Study quality was assessed using a modified QuADS tool. Findings were synthesised narratively. Twenty studies were included, spanning diverse methodologies and cancer localisations. A total of 225 constructs were identified. The models varied in focus, terminology, and detail. Nine models focused on the SDM process only, describing diverse sequences of steps using different terms, among which four common steps could be identified: exchange information; discuss alternatives; elicit patient values and preferences; and make a decision. Ten models included SDM determinants at patient-, clinician-, healthcare system- and treatment-level, and interpersonal and social factors. Six models included SDM outcomes such as satisfaction with care, decision or relationship, health and quality of life. Three models specified other components, i.e. SDM actors, goals or assumptions. Ambiguity in construct definitions and interrelationships was common, and several models lacked explicit theoretical propositions. Beyond the commonalities identified across models, the diversity and lack of formal specification of oncology-specific SDM models pose challenges for the development, evaluation and implementation of SDM interventions in practice. Given the theoretical fragmentation and current challenges in SDM implementation, advancing theory remains crucial to inform practice and improve patient outcomes.