Patient Advocacy and Support Panel

The pharmacist's role in the community is currently directed towards providing drug information and patient care rather than drug compounding and dispensing. Patient counseling is an essential skill for pharmacists. So as to improve the pharmacist role in the community and enhance the patient's education and counseling skills, many continuing education programs are established. The aim of this study is to assess the perceptions and tendency of community pharmacists in Iraq regarding patients counseling and continuing pharmacists’ educational programs.

The purpose of this integrative literature review is to describe existing research knowledge on short-term counselling of patients and family members undergoing acute health change. The data consisted of 25 research articles and five literature reviews from the years 2003-2015, analysed using inductive content analysis. The research knowledge was found to describe elements of good patient counselling, satisfaction with the elements of good patient counselling, developing the elements of good patient counselling and impact of the patient counselling elements. Focussing on the patient’s individual life situation, use of multiple counselling methods and provision of information in good interaction contribute to high quality patient counselling. Some patients and family members were satisfied with the patient counselling elements while others expressed needs for the development of the elements. The conflicting results indicate a need to develop a uniform, systematic patient counselling method, with special attention paid on the quality of counselling.

Genetic counselling in patients with bipolar disorder–ethical challenges

A comparison of medication counseling evaluation tools utilized in colleges of pharmacy to three recognized guidance documents

Summary • The need for counselling of patients with HIV-related diseases has been clearly demonstrated in the literature. • This study aimed to elicit nurses', perception of their role in such counselling. • Nurses did not have a uniform understanding of the term ‘counselling’, viewing it mostly as ‘information-giving’, however listening skills and allowing the person to deal with their own problems and fears were also central issues. • The doctor was seen as the most important health professional when it comes to counselling of AIDS patients. The nurse is viewed as a ‘number two’, surprisingly perceived as more important than priests, psychologists and social workers, despite being thought of as not being well trained and consequently not having the necessary skills for counselling interventions. • As a result, there was a clear need and wish for more general education on AIDS and counselling issues.

BackgroundA 10 year old only child of Polish parents was referred via the concerning behaviours pathway to assess her for developmental impairment. Her medical history was complex, beginning with being...

Background and aims: Patient advocacy role in nursing is affected by several barriers, such as the lack of nurses’ ethical knowledge about their roles as patient advocators. Since this role can be learned, these barriers may be overcome by education through an effective method. The present study aimed to investigate the effect of ethics education on nurses’ patient advocacy using ethics narration and lecture compared to a control group. Methods: This quasi-experimental, three-group design study was conducted among nurses of hospitals in Birjand, South Khorasan province in 2016-2017. The sample size (n) was 27 in the narration group, 26 in the lecture group, and 22 in the control group. We used the Protective Nursing Advocacy Scale (PNAS) developed by Hanks to collect data, whose validity and reliability have been confirmed in Iran. Data analysis was performed using a trial version of SPSS 22 by descriptive and analytical statistics appropriate to the research objectives. Results: The results of comparing the three groups after eliminating the effect of age indicated that lecture-based education increased the total patient advocacy (P<0.05) and the impact of education and environment (P<0.05) significantly compared with the control group. However, the narration method did not show any significant difference to the control group. Conclusion: The lecture and narration methods increased nurses’ patient advocacy. We recommend combining the two methods to achieve better outcomes.

Background Patient advocacy is central to nursing practice; acting as a patient advocate in the perioperative environment requires the care of patients that are highly vulnerable and unable to speak up for themselves, in a busy and often highly pressurized environment involving multiple professional groups providing care simultaneously. This can present particular challenges for nurses, particularly those unfamiliar with the expectations of being a patient advocate. Objectives The objective of this review was to identify the meaningfulness of perioperative nurses' experiences of advocacy. The specific objectives were to explore the following questions: What are perioperative nurses' experiences as patient advocates? How do perioperative nurses define advocacy? What are the barriers to and strategies for promoting advocacy in the perioperative environment? Inclusion criteria Types of participants Registered nurses, enrolled nurses, licensed practical nurses, licensed vocational nurses, and midwives working in the perioperative department, including anesthetic, scrub/scout and post-anesthetic care room nurses, were eligible for inclusion. Phenomena of interest Perioperative nurses' experiences of acting as patient advocates were the phenomena of interest in this review. This includes experiences of the barriers to nursing advocacy, strategies used, and explorations of how nursing advocacy benefits perioperative patients. Context The perioperative department, including preoperative, intraoperative and postoperative recovery areas, was of interest in this review. Types of studies This review aimed to consider all qualitative studies that sought to examine perioperative nurses' experiences of advocacy including but not limited to phenomenology, ethnography, hermeneutics, action research, grounded theory, feminist research and naturalistic inquiry. Search strategy Searches were conducted across 13 databases, including four for unpublished studies, with no language restriction, and with the date range of 1985 to April 2014. Studies were assessed for relevance to the review using a Verification of Relevance form developed by the reviewers and based on the recommendations of the Cochrane Collaboration. Methodological quality Papers selected for retrieval were assessed by two independent reviewers for methodological validity using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). A third reviewer was used to assess three papers where disagreements between the first two reviewers could not be resolved through discussion. Data extraction Data were extracted from papers included in the review using the standardized data extraction tool from JBI-QARI. Data synthesis Findings were pooled using JBI-QARI. Findings were assembled and rated according to their quality, and categorized on the basis of similarity in meaning. These categories were then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings. The ConQual approach for grading the synthesized findings was used. Results Nine studies were included in the review. From these, 31 findings were aggregated into five categories, which were then meta-synthesized into two synthesized findings which provide evidence for nursing practice. The two synthesized findings are:safeguarding from harm - being the patient's voice; and challenges of patient advocacy can be alleviated by experience and training. Conclusions Perioperative nurses identify being a voice, communicating with, and safeguarding the patient as key advocacy activities that they undertake within their roles. Establishing trust between the nurse and patient is an important aspect of patient advocacy in this environment. Acting as a patient advocate can expose perioperative nurses to workplace conflict and cause them distress. While professional experience prepares nurses to be patient advocates, less experience in the perioperative environment and time pressures were reported as barriers to the role.

BackgroundHIV-positive children in low-income settings face many challenges to adherence to antiretroviral treatment (ART) and have increased mortality on treatment compared to children in developed countries. Adult ART programmes have demonstrated benefit from community support to improve treatment outcomes; however, there are no empirical data on the effectiveness of this intervention in children. This study compared clinical, virological and immunological outcomes between children who received and who did not receive community-based adherence support from patient advocates (PAs) in four South African provinces.MethodsA multicentre cohort study of ART-naïve children was conducted at 47 public ART facilities. Outcome measures were mortality, patient retention, virological suppression and CD4 percentage changes on ART. PAs are lay community health workers who provide adherence and psychosocial support for children's caregivers, and they undertake home visits to ascertain household challenges potentially impacting on adherence in the child. Corrected mortality estimates were calculated, correcting for deaths amongst those lost to follow-up (LTFU) using probability-weighted Kaplan-Meier and Cox functions.ResultsThree thousand five hundred and sixty three children were included with a median baseline age of 6.3 years and a median baseline CD4 cell percentage of 12.0%. PA-supported children numbered 323 (9.1%). Baseline clinical status variables were equivalent between the two groups. Amongst children LTFU, 38.7% were known to have died. Patient retention after 3 years of ART was 91.5% (95% CI: 86.8% to 94.7%) vs. 85.6% (95% CI: 83.3% to 87.6%) amongst children with and without PAs, respectively (p =0.027). Amongst children aged below 2 years at baseline, retention after 3 years was 92.2% (95% CI: 76.7% to 97.6%) vs. 74.2% (95% CI: 65.4% to 81.0%) in children with and without PAs, respectively (p=0.053). Corrected mortality after 3 years of ART was 3.7% (95% CI: 1.9% to 7.4%) vs. 8.0% (95% CI: 6.5% to 9.8%) amongst children with and without PAs, respectively (p=0.060). In multivariable analyses, children with PAs had reduced probabilities of both attrition and mortality, adjusted hazard ratio (AHR) 0.57 (95% CI: 0.35 to 0.94) and 0.39 (95% CI: 0.15 to 1.04), respectively.ConclusionCommunity-based adherence support is an effective way to improve patient retention amongst children on ART. Expanded implementation of this intervention should be considered in order to reach ART programmatic goals in low-income settings as more children access treatment.

Abstract: Background: Warfarin is the mainstay of anticoagulation therapy; however, its’ use has been associated with many complications especially bleeding. Adequate patients’ knowledge on warfarin can improve anticoagulation control with reduction in adverse drug reactions and other associated complications. The objective of the study was to assess the impact of pharmacist’s counseling on patient’s knowledge of warfarin. Methods: A prospective randomized controlled study was carried out in Shahid Gangalal National Heart Center, Kathmandu, Nepal. A simple random sampling technique was used to enroll the participants in the intervention and control groups. A total of 99 patients participated in the study. Both the groups were administered the same questionnaire to assess their baseline knowledge. Verbal counseling of 20 min was provided to the intervention group whereas the control group received no pharmacist intervention. Final assessment of the knowledge level of both groups was done after a period of 2 months using the same questionnaire. Results: A significant increment in percentage of patients with adequate knowledge on warfarin was found in the counseled group after intervention (p<0.05). The results further suggested that significantly increased proportion of patients in the intervention group achieved a better control of INR (International Normalized Ratio) after the intervention. No significant association was found between duration of therapy, gender, age and the knowledge score of the patients. Conclusion: Pharmacist provided counseling can significantly improve patients’ knowledge on warfarin. Key words: Anticoagulation, Counseling, INR, Knowledge, Warfarin.

Background &amp; Aim: One of the main concerns in patients with myocardial infarction is that there is no return to sexual activities. Sexual counseling is an interaction between patient and nurse that requires appropriate performance, responsibility, and confidence. The present study aimed to determine nurses' performance, responsibility, and confidence in sexual counseling of myocardial infarction patients. Methods &amp; Materials: This descriptive/analytical cross-sectional study was carried out on 180 nurses from the cardiac care unit (CCU) at the hospitals located in southeastern Iran in 2018. Sampling was performed with the census method; and the data collection tool was a demographic information form and questionnaire, involving nurses' performance, responsibility, and confidence in sexual counseling of cardiac patients. Information was analyzed using SPSS software (ver.18) through descriptive and inferential statistics, including t-test, ANOVA, and Pearson correlation coefficient. The significance level was considered as 0.05. Results: The mean of total performance scores in the nurses was 14.54 ± 4.4, indicating the average performance of nurses in the sexual counseling of myocardial infarction patients. The total mean score of responsibility was 14.32±2.7, indicating their average responsibility in sexual consultation. The total mean score of confidence was 12.86±2.35, indicating their average confidence in the sexual counseling of cardiac patients. Conclusion: The present research showed that nurses’ performance and confidence were not high or acceptable in the sexual counseling of patients with a myocardial infarction, which can lead to some dangerous events such as recurrent myocardial infarction or sudden death. Thus, holding some workshops or training related to the sexual counseling of the patients can assist nurses to be better in this case.

BackgroundTypically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics.MethodsIn the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey.ResultsIn total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%).ConclusionsThis sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.

Community pharmacists serve as the most accessible healthcare providers, playing a pivotal role in patient counselling, health education, and disease prevention. Despite their critical function in the healthcare system, limited research has examined their actual involvement in these areas within Nairobi, Kenya. This study aimed to assess community pharmacists' engagement in patient counselling and health education, comparing self-reported practices with observed behaviours using a simulated patient approach. This study employed a cross-sectional descriptive design incorporating both structured questionnaires and a simulated patient (SP) methodology to compare self-reported and observed counselling practices among registered community pharmacies in Nairobi. Sixty pharmacies were randomly selected, and forty-eight pharmacists completed the study. Data were collected using structured questionnaires that assessed pharmacists' self-reported counselling and health education practices, alongside simulated patient visits that evaluated actual pharmacist-patient interactions. The case scenarios included a request for diabetes medication without a prescription, an over-the-counter acne treatment request, and a consultation for severe acne. These encounters were used to assess counselling competence, regulatory adherence, and patient education. Data were analysed using descriptive statistics to compare self-reported practices with observed behaviours. While 66.7% of pharmacists reported providing detailed counselling, only 26.7% of simulated visits reflected this practice. Additionally, 75% of pharmacists provided minimal verbal counselling beyond stating the drug name and dosage. Patient satisfaction levels were low, with most simulated patients rating their encounters poorly on a 20-point scale. The study underscores critical gaps in patient counselling, health education, and adherence to prescription regulations among community pharmacists in Nairobi. The disconnect between self-reported and observed counselling practices suggests the need for targeted training programs to enhance pharmacists' communication skills, regulatory compliance, and disease prevention counselling. Strengthening enforcement mechanisms and integrating patient-centred education strategies in pharmacy curricula are essential to optimizing pharmacists' roles in healthcare. These findings highlight the need for targeted training and regulatory enforcement to strengthen pharmacists' roles in patient counselling and health education in Nairobi.

Recently, same-day Metabolic Surgery (MS) has gained traction, especially to reduce costs and hospital resource utilization. While shorter hospital stays are desirable, accelerated discharge could increase postoperative burden for those patients at risk. This study evaluated whether specific patient characteristics are associated with increased 30-day readmission rates and number of readmissions as a potentially identifying those less suited for same-day discharge. Using the MBSAQIP (2015-2021), 960,757 cases of primary minimally invasive sleeve gastrectomy (SG), Roux-en-Y gastric bypass (RYGB), and duodenal switch (DS) were included. Readmission characteristics were extracted from ancillary Participant Use Files (PUF) and linked to the main MBSAQIP data. Zero-inflated Poisson (ZIP) models assessed associations between preoperative patient characteristics and readmission risk. The two-stage models analyzed odds of any 30-day readmission and calculated the relative risk (RR) of multiple readmissions. Several key predictors of single as well as multiple readmissions in the first 30 days following intervention were noted. Black or Hispanic race, BMI, diabetes, COPD, GERD, and therapeutic anticoagulation were associated with increased odds of readmission likelihood after MS. Black race and GERD predicted increased readmission frequency (multiple readmissions) among all readmission cases, while those aged ≥ 40years and Hispanic race were less likely to require multiple readmissions. This large-scale MS analysis highlights patient characteristics that should be carefully considered by MS providers during patient counseling and consideration of same-day discharge. Readmission poses significant financial, physiological, and psychological burdens emphasizing the need for careful patient evaluation and counseling, particularly for those at higher risk, to optimize patient outcomes in the context of accelerated discharge protocols.

For the past two decades, the National Cancer Institute (NCI) has supported the involvement of patient advocates in both internal advisory activities and funded research projects to provide a patient perspective. Implementation of the inclusion of patient advocates has varied considerably, with inconsistent involvement of patient advocates in key phases of research such as concept development. Despite this, there is agreement that patient advocates have improved the patient focus of many cancer research studies. This commentary describes our experience designing and pilot testing a new framework for patient engagement at SWOG, one of the largest cancer clinical trial network groups in the United States and one of the four adult groups in the NCI's National Clinical Trials Network (NCTN). Our goal is to provide a roadmap for other clinical trial groups that are interested in bringing the patient voice more directly into clinical trial conception and development. We developed a structured process to engage patient advocates more effectively in the development of cancer clinical trials and piloted the process in four SWOG research committees, including implementation of a new Patient Advocate Executive Review Form that systematically captures patient advocates' input at the concept stage. Based on the positive feedback to our approach, we are now developing training and evaluation metrics to support meaningful and consistent patient engagement across the SWOG clinical trial life cycle. Ultimately, the benefits of more patient-centered cancer trials will be measured in the usefulness, relevance, and speed of study results to patients, caregivers, and clinicians.