Patient Perspectives Research Articles

Patients' sense of medical gain on family doctor contracting services in China: scale development and preliminary validation

Background and aimThe system of family doctor contract services is a crucial component of China's primary healthcare system. Patients enrolled in family doctor contract services typically receive more comprehensive health services. However, it remains uncertain whether the family doctor contract services can fully meet the healthcare needs of patients. Despite extensive research on family doctor contract services, there has been relatively little investigation from the perspective of patients' sense of gain, and there are no specific tools available to measure patients' sense of gain in healthcare. Therefore, this study aims to develop a scale to measure patients' sense of gain in family doctor contract services.MethodsThis study enrolled 600 patients under family doctor contracts. It utilized a review of literature and Delphi expert consultation to form the concept of patients' sense of medical gain in the context of family doctor services, establish an item pool, screen items, and evaluate the scale's reliability and validity. Factor analysis assessed the scale's structural validity, while Cronbach's alpha coefficient evaluated its internal consistency. Test–retest reliability and split-half reliability were used to assess the scale's reliability.ResultsThe Patients' Sense of Medical Gain in the context of Family Doctor services(PSMG-FD) scale for assessing sense of medical gain among family doctor contract patients comprises 19 items, categorized into five factors: Medical convenience, continuity, reliability, humanistic care, and experience. Confirmatory factor analysis results indicated satisfactory fit indices: χ2/df = 2.781, RMSEA = 0.077, RMR = 0.031, GFI = 0.875, NFI = 0.918, IFI = 0.946, TLI = 0.934, CFI = 0.945, and RFI = 0.901. The AVE values for different dimensions were 0.544, 0.739, 0.741, 0.755, and 0.654, all surpassing the threshold of 0.5. The CR values for each dimension were 0.820, 0.919, 0.919, 0.925, and 0.850, all exceeding 0.7, indicating satisfactory convergent validity. The interdimensional correlation coefficients were lower than the square roots of the corresponding AVEs, suggesting correlation among latent variables while maintaining sufficient discriminant validity. The PSMG-FD scale demonstrated good reliability and validity, with a Cronbach’s α coefficient of 0.947, test–retest reliability of 0.955, and split-half reliability of 0.895.ConclusionThe scale exhibits good reliability and validity, making it a suitable instrument for evaluating sense of medical gain among family doctor contract patients in China.

The impact of living with multiple long-term conditions (multimorbidity) on everyday life – a qualitative evidence synthesis

BackgroundMultiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs), often termed multimorbidity, has a high and increasing prevalence globally with earlier age of onset in people living in deprived communities. A holistic understanding of the patient’s perspective of the work associated with living with MLTCs is needed. This study aimed to synthesise qualitative evidence describing the experiences of people living with MLTCs (multimorbidity) and to develop a greater understanding of the effect on people’s lives and ways in which living with MLTCs is 'burdensome' for people.MethodsThree concepts (multimorbidity, burden and lived experience) were used to develop search terms. A broad qualitative filter was applied. MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), CINAHL (EBSCO) and the Cochrane Library were searched from January 2000-January 2023. We included studies where at least 50% of study participants were living with three or more LTCs and the lived experience of MLTCs was expressed from the patient perspective. Screening and quality assessment (CASP checklist) was undertaken by two independent researchers. Data was synthesised using an inductive approach. PPI (Patient and Public Involvement) input was included throughout.ResultsOf 30,803 references identified, 46 met the inclusion criteria. 31 studies (67%) did not mention ethnicity or race of participants and socioeconomic factors were inconsistently described. Only two studies involved low- and middle-income countries (LMICs). Eight themes of work were generated: learning and adapting; accumulation and complexity; symptoms; emotions; investigation and monitoring; health service and administration; medication; and finance. The quality of studies was generally high. 41 papers had no PPI involvement reported and none had PPI contributor co-authors.ConclusionsThe impact of living with MLTCs was experienced as a multifaceted and complex workload involving multiple types of work, many of which are reciprocally linked. Much of this work, and the associated impact on people, may not be apparent to healthcare staff, and current health systems and policies are poorly equipped to meet the needs of this growing population. There was a paucity of data from LMICs and insufficient information on how patient characteristics might influence experiences. Future research should involve patients as partners and focus on these evidence gaps.

Dental professional recognition of dental anxiety from a patient perspective: a grounded theory study.

To explore patients' experiences of dental staff recognising their dental anxiety. Semi-structured interviews were conducted with 10 adults who identified themselves as dentally anxious. The sampling of study participants was purposive, and the audio-recorded interviews were transcribed verbatim. Classical grounded theory and constant comparative analysis were used to analyse the interview data inductively. Theoretical saturation was reached after eight interviews. Hope for 'Fingerspitzengefühl' from the dental staff emerged as the core category, which means having an intuitive instinct about a situation and knowing how to react to it. It also is tact or sensitivity that comes with experience. The foundation for this core was four categories: Dental anxiety causes involuntary signals, Strategies to minimise contact, Seen and respected by the staff, and Recognisable strategies. The interviewees hoped that the dental staff would notice their dental anxiety and understand their feelings of shame, and take relevant actions to alleviate their anxiety. Dentally anxious patients often struggle to express their anxiety but hope to find a dentist with Fingerspitzengefühl. The result cannot be generalised but transferred to a similar population.

Perspectives on Diversion of Medications From Safer Opioid Supply Programs.

Safer supply programs were implemented in Canada to provide pharmaceutical-grade alternatives to the toxic unregulated drug supply. While research shows clinical benefits and reduced overdose mortality among safer supply patients, medication diversion remains a concern. To examine provider (prescribing clinicians and allied health professionals) and patient perspectives on diversion of opioids prescribed in safer supply programs. In 2021, qualitative interviews and sociodemographic questionnaires were conducted with patients and providers across 4 safer supply programs in Ontario, Canada. Interviews with 21 providers (physicians, nurse practitioners, and allied health professionals) and 52 patients examined experiences implementing safer supply or receiving care. Initial data analysis was conducted from December 2021 to March 2022, and the subanalysis focused on diversion was conducted from December 2023 to March 2024. Participation in safer supply program as a patient or provider. Data about diversion were coded, extracted, and thematically analyzed. Of 52 patient participants, 29 (55.8%) were men and 23 (44.2%) were women; 1 was Black (1.9%), 9 (17.3%) were Indigenous, 1 was Latino (1.9%), and 41 (78.8%) were White; and the mean (SD) age was 46.5 (9.6) years. Of 21 provider participants, 6 (28.6%) were men, 13 (61.9%) were women, and 2 (9.5%) were nonbinary; and the mean (SD) age was 37.6 (7.6) years. Participants characterized diversion as a spectrum ranging from no diversion, to occasional medication sharing and loss, to selling all prescribed doses of safer supply (considered rare and easy to detect). Most patients reported they consumed all or most of their prescribed medications and rarely shared or sold their doses. However, providers and patient participants shared that people might share, trade, and/or sell some of their medications with other opioid-using people for multiple reasons. Most prominent reasons for diversion were (1) compassionate sharing with intimate partners and friends to manage withdrawal and overdose risk; (2) selling or trading medications to address their own unmet substance use needs (eg, high opioid tolerance); and (3) medication loss due to poverty, homelessness, and associated vulnerabilities to theft and coercion. Programs used nonpunitive urine drug screening practices and patient self-report to monitor medication use. When diversion was identified, providers described using nonjudgmental conversations to understand patients' needs and develop mitigation strategies that addressed underlying reasons for diversion, including changing doses and medications prescribed to better match patients' needs, enrolling eligible intimate partners, and developing safety plans to mitigate vulnerabilities to theft and coercion. Diversion encompasses a wide spectrum of practices (selling, sharing, and loss of medications), and occurs for complex reasons that surveillance and punitive measures are unlikely to mitigate. Diversion may be best addressed by expanding medication options to better match patients' diverse substance use needs and high tolerance, alongside wraparound social supports.

Lived experiences of persons on tuberculosis treatment in Nairobi County, Kenya: a mixed methods study

BackgroundTuberculosis program effectiveness is majorly measured by disease severity and treatment response without integrating patient perspectives. Yet, it’s a critical dimension in clinical decision-making that enhances health worker-patient interactions and increases individuals’ sustained engagement with treatment, thereby benefiting the people affected and the wider public by mitigating the infection risk. This study assessed the lived experiences of persons affected by tuberculosis who were on treatment in Nairobi County, Kenya.MethodsA cross-sectional study was conducted in May 2023 among 392 persons with drug-susceptible pulmonary tuberculosis in five facilities in Nairobi County. Participants were selected through simple random sampling and interviewed by semi-structured questionnaires and focused group discussions. Data on prevention and control strategies, facility preference, medication burden, interaction with healthcare workers, and the socio-economic effects of the disease were collected. Quantitative data was analyzed descriptively using frequencies, percentages, means, and standard deviations while qualitative data was transcribed, coded, and thematically analyzed.ResultsThe sample consisted of 245 males and 147 females aged between 3 and 74 years. Despite the high rating of their interactions with the healthcare workers, the findings show insufficient knowledge of the prevention and control strategies of TB. Additionally, food insecurity resulting from an inability to afford recommended meals, medication burden such as high pill burden especially where there are coexisting medical conditions, undesirable taste and size of the TB tablets, adverse drug events, economic burden due to loss of income, and stigma from the family and community were reported to affect treatment outcomes.ConclusionTreatment outcomes are influenced by multi-level factors such as low knowledge of TB prevention and control strategies, stigma, food insecurity, medication burdens like pill number, size, taste, and adverse drug reactions, facility preference, and economic hardships including loss of income. Understanding the individual needs of persons with TB will help develop interventions that are specific to them for better treatment outcomes.

Validation of the European Oncology toolkit for the self-assessment of Quality of Life (EUonQoL-Kit) in cancer patients and survivors: study protocol of a pan European survey

BackgroundEuropean cancer programmes and policies lack a unified health-related quality of life (HRQoL) assessment tool. The European oncology quality of life toolkit (EUonQoL-Kit) is a novel set of HRQoL questionnaires, co-designed with cancer patients and survivors, translated and culturally adapted into 31 European languages, and with both static and dynamic electronic administration modes. The main aim of this study is the psychometric assessment of the static version. Secondary aims include evaluating the EUonQoL-Kit acceptability, cross-validating the administration modes, exploring individual factors potentially affecting HRQoL and HRQoL inequalities between countries.MethodsA sample of 4,500 participants, including three groups (active treatment, survivors, and palliative care) from 45 centres in 25 EU Member States and 7 associated countries, will be enrolled in a multicentre observational cross-sectional study. All participants will complete the static EUonQoL-Kit; three subsamples (each 10% of the total sample) will also respectively complete the following: a) dynamic EUonQoL-Kit, based on Item Response Theory (IRT)/Computer Adaptive Testing (CAT), b) FACT-G and EQ-5L-5D, and c) static EUonQoL-Kit (re-test). Psychometric analyses will encompass exploratory and confirmatory factor analyses (measurement model and structural validity), Cronbach's alpha (internal consistency), intraclass correlation coefficient (test–retest reliability), Pearson/Spearman correlation (concurrent validity), comparison of group scores (construct validity), and Differential Item Functioning (cross-country item equivalence). Secondary analyses will evaluate participant response time and rate, and static/dynamic score differences. Regression models will estimate associations between individual factors and HRQoL.DiscussionThe EUonQoL-Kit will serve to systematically incorporate patient perspectives into European cancer policies and to address HRQoL inequalities across Europe.Trial registrationClinicalTrials.gov Identifier: NCT05947903, 2023–06-28.

A retrospective chart review and thematic analysis of patients seeking mpox vaccination during the initial outbreak in 2022–2023: evaluation of access, motivations, and stigma

BackgroundMpox was identified in many previously non-endemic countries, including Canada, as of May 2022. In response to the increase in cases in Canada, and more specifically the province of Ontario, the vaccine Imvamune was rolled out. Eligibility was governed by provincial health authorities, and the response varied by region. In addition, because eligibility language was describing certain types of sexual activity, there was potential for harm. The aim of this study was to further explore the experiences of vaccine recipients as it pertained to obtaining the vaccine, access to information and vaccination, self-assessment of risk, perspectives on vaccine rollout, stigma, and community support.MethodsAs a part of care, a clinic in downtown Toronto, Ontario, began hosting mpox immunizations clinics between July of 2022 and March of 2023 with a standard set of clinical intake questions. Following this period, we conducted a retrospective chart review of 113 Imvamune vaccine recipients. Both descriptive quantitative data and thematic qualitative analysis was completed.ResultsOne hundred thirteen patients received one or two doses of Imvamune between July 2022 and March 2023. The average age was 49 (range 17–78). Patients were not asked sex or gender; however, 111 patients had a male sex listed on their health card and three female sex, one of whom self-identified as a transwoman, with the remainder not having had their sex inputted into their medical records. Through descriptive thematic analysis, this study found the following recurrent themes mentioned by patients in the data set: 1) eligibility, 2) rollout and access, 3) mis/information in the media, 4) stigma.ConclusionsThere is little Canadian data on mpox vaccine rollout beyond epidemiologic and cohort information. Understanding the difficulties and stigma that were faced by vaccine recipients is crucial to ensure that when a public health initiative is initiated, that past traumas are not replicated. This study provides valuable patient perspectives in how to improve ongoing rollout, as well as how a campaign that includes a sexual health component may be more sensitively considered in the future.

Understanding access to sexual and reproductive health in general practice using an adapted Candidacy Framework; a systematic review and qualitative evidence synthesis.

Background General practice has a key role in reducing inequity in access to sexual and reproductive health (SRH). Unplanned pregnancy, abortion and STIs are increasing and disproportionately affects deprived communities and ethnic minority groups. The candidacy framework offers a practical, theoretical framework for understanding the complex interactional processes of access to SRH in general practice. Aim To use the candidacy framework to explore access of SRH in general practice. The seven interaction stages include, identification of need, navigation of services, permeability of services, appearing and asserting need, adjudication by healthcare professional, offers or resistance of offer and the local operating conditions or local production of candidacy. Design and setting This study involved a systematic review with qualitative evidence synthesis using a framework approach. Methods A systematic search of MEDLINE, EMBASE, PUBMED, and the Web of Science was conducted to identify primary qualitative research studies exploring access to SRH in general practice from practitioner, public, and patient perspectives in countries with universal healthcare. The candidacy framework was used to synthesise the findings. Results Analysis of 42 studies revealed the impact of stigma, shame, and embarrassment among individuals, communities, and healthcare practitioners. Findings showed limited inclusion of demographics such as ethnicity and socio-economic status. Barriers to access were more evident for those from lower socio-economic communities, ethnic minorities and LGBTQ+. There are multiple barriers, which include the behaviours of healthcare professionals who have a crucial role in recognising an individual's SRH need. Conclusions General practice offers a cradle-to-grave healthcare service, which should have SRH as a priority area of provision. Further understanding is needed of the impact of historic harms by medicine and healthcare on racialised individuals and gender minorities.

Exploring Opportunities and Challenges for the Spread, Scale-Up, and Sustainability of mHealth Apps for Self-Management of Patients With Type 2 Diabetes Mellitus in the Netherlands: Citizen Science Approach.

Technologies evolve at a breakneck pace, and the success of mobile health (mHealth) for people with type 2 diabetes mellitus (T2DM) depends on whether health care professionals, care management, government regulators, and consumers will adopt the technology as a viable solution to enhance patient self-management. In this study, we explored the challenges of the implementation of mHealth apps in care for patients with T2DM and determined to what extent these challenges complicate the dissemination, limit scale-up, and influence the sustainability of technological interventions for patients with T2DM. The nonadoption, abandonment, and challenges to scale-up, spread, and sustainability (NASSS) framework served as the basis for our study. The 7 domains of the NASSS framework were explored with a citizen science approach using questionnaires, semistructured in-depth interviews, and focus groups together with patients with T2DM, care professionals, technology developers, policy officers, and a patient organization. Regarding the domain "condition," being aware of their condition and changing lifestyle were crucial for patients with T2DM to get to grips with their life. The rapid development of health apps for T2DM was highlighted in the domain "technology." Users should be aware of these apps and know how to use them. The domain "value proposition" included the patient perspective and elaborated on personal values, as well as care professionals who focus on personalized care and pressure on health care. Regarding the "adopters," it is crucial to know who needs to use and introduce the apps. Responsibility, a shared vision, and resistance among care professionals were mentioned as important determinants for "organization." Finally, the domain "wider system" showed the importance of involving multiple institutes, care guidelines, and reimbursements. This study investigated the implementation of mHealth apps in an early stage of the implementation process. Key stakeholders were involved, who attributed to the possibilities and limitations of the implementation. It is crucial to have a clear vision from an organizational perspective and specific prerequisites for implementation strategies at micro, meso, and macro levels. Essential strategies at the national level include guidelines for regulations, privacy, and security; the integration of mHealth into T2DM care guidelines; and sufficient reimbursement by health insurers.

Patients' and clinicians’ perspectives on virtual phone consultation in vascular surgery

IntroductionThe pandemic limited our capacity for face-to-face (F2F) outpatient clinics and therefore we set up virtual phone consultation clinics (VPC). Our study evaluated patients' and clinicians’ perspectives on our VPC...

Building Patient Trust through Enhanced Data Security: A Saudi Arabian Hospital Case Study

Purpose: The study highlights the need for healthcare providers to prioritize the implementation of enhanced authentication mechanisms and consent management systems to align with patient expectations and build trust. Additionally, the research emphasizes the importance of addressing the knowledge gap among healthcare staff through mandatory training programs and clear communication strategies. The proposed action plan outlines concrete steps to enhance data security and transparency, positioning the hospital as a leader in safeguarding patient information. Methodology: A survey was conducted among patients in a private hospital setting to assess their perceptions and expectations regarding the security of their medical information. The survey explored patient awareness of data security risks, preferences for authentication methods, and views on consent protocols for accessing health records. Originality and implication: This study provides valuable insights into patient perspectives on data security within a private hospital setting, an area often overlooked in broader healthcare data security research. The findings have significant implications for healthcare providers, emphasizing the need to align security practices with evolving patient expectations to maintain trust and ensure the responsible handling of sensitive medical information. Keywords: Patient Data Security, Healthcare Data Privacy, Patient Consent, Authentication Methods, OTP Verification, Electronic Health Records, Security Awareness Training, Trust in Healthcare, Private Hospital Setting

Brentuximab Vedotin (Adcetris)

Reimbursement reviews are comprehensive assessments of the clinical effectiveness and cost-effectiveness, as well as patient and clinician perspectives, of a drug or drug class. The assessments inform nonbinding recommendations that help guide the reimbursement decisions of Canada’s federal, provincial, and territorial governments, with the exception of Quebec. This review assesses brentuximab vedotin for injection (Adcetris), 50 mg per vial, lyophilized powder for reconstitution, IV infusion. Indication: For the treatment of previously untreated patients with stage IV Hodgkin lymphoma, in combination with doxorubicin, vinblastine, and dacarbazine.

Positive Reinforcement: Balancing Negative and Positive Feedback for Comprehensive Improvement.

Patient feedback plays a vital role in healthcare, offering insights into the quality of care and promoting professional development. Despite the emphasis on feedback collection from regulatory bodies, institutional policies appear to focus on processing complaints and negative feedback over positive feedback. The aim of this study is to investigate the processes relevant to the systematic logging of patient feedback in the dental hospitals across the UK and the Republic of Ireland. A cross-sectional survey study was conducted with a prior local survey serving as a pilot. Of the 22 hospitals of the ADH, 13 responded to the questionnaire (59%). Descriptive statistics including frequencies and percentages were produced to summarise the sample and data. Qualitative data were analysed using Braun and Clark's thematic analysis [1] following an inductive approach. We found that the institutions of the ADH perceive that most negative feedback is logged, whereas most positive feedback is missed. It is evident that positive patient feedback is collected and logged less systematically than negative feedback, and most institutions acknowledge the need for improvement in this area. This discrepancy likely stems from a lack of structured procedures for encouraging and recording positive feedback. Promoting positive feedback is crucial, as both positive and negative feedback offer valuable insights. To enhance feedback collection and utilisation, research should expand to include the perspectives of patients and individual clinicians. Furthermore, exploring the development of a universal feedback system could simplify and improve the collection and use of patient feedback across institutions.

Missed Opportunities: A Mixed-Methods Assessment of Disparities in Treatment for Fecal Incontinence.

Previous work identified racial disparities in access to fecal incontinence (FI) treatments. However, less is known about patient perspectives of these barriers. This study assessed differences in FI symptom severity and treatment utilization between Black and White patients. This mixed-methods assessment studied adult non-Hispanic Black and White women treated for FI who either did not respond to medical therapy nor received sacral neuromodulation or did not follow up after medical therapy. Structured interviews queried patients about treatments offered and symptom severity. Of the 118 patients in the retrospective evaluation, 59 (50%, 24 Black and 35 White) were interviewed. Black patients were more likely than White patients to report occasional, weekly, or daily solid and stool incontinence (75.0% vs 48.6%, P = 0.042; 87.5% vs 51.4%, P = 0.004, respectively) and flatal incontinence (83.3% vs 62.9%, P = 0.088).Of those prescribed fiber supplements and antidiarrheal medications, Black patients were less likely to report symptom improvement (25.0% vs 70.0%, P = 0.013; 57.1% vs 87.5%, P = 0.092, respectively, for each medication type) and ongoing regimen adherence (25.0% vs 63.3%, P = 0.013; 28.6% vs 87.5%, P = 0.035, respectively).Black patients were more likely to report impairment in daily functioning secondary to FI (83.3% vs 57.1%, P = 0.034) and were more likely to seek a follow-up visit with a health care professional that performs sacral neuromodulation (79.2% vs 28.6%, P < 0.001). Black patients were more likely to have severe symptoms and poorer treatment outcomes and desire future follow-up, highlighting the importance of addressing racial differences in patient preferences in FI management strategies.

Incorporating Patient and Family Perspectives into ICU Environmental Design: A Systematic Review and Narrative Synthesis of Existing Literature.

This review aims to assess the incorporation of patient and family input into intensive care unit (ICU) design processes. It aims to highlight the importance of prioritising patient and family perspectives in ICU design to improve patient experiences and clinical outcomes. Traditionally, ICU design has focused on clinical efficiency at the expense of patient-centered needs, leading to heavily sedated patients and neglected holistic care delivery. While architects historically dominated design decisions, there's no recognition of the necessity to integrate patient and family perspectives. However, such efforts remain rare despite professional guidelines advocating for multi-professional team involvement. This review summarises the published literature on built ICUs that have incorporated patient and family input into the design process. It evaluates methodologies used and measures patient-centric outcomes to identify successful examples and areas for improvement in future initiatives. The limited published literature identifies only three projects successfully integrating patient and family input into ICU design. Additionally, one project was identified in a search of the gray literature. However, these projects often lack rigorous evaluation of patient-centric outcomes, with initiatives involving patients and families remaining uncommon. The review underscores the need for more comprehensive evaluation and greater emphasis on patient and family involvement in ICU design. This review emphasizes the significance of integrating patient perspectives into ICU design to enhance outcomes and improve experiences. While progress has been made in recognizing their importance, more efforts are needed to prioritize patient and family involvement for creating conducive environments for healing and recovery.

BARRIER OF REFERRAL–BACK IN SECONDARY HEALTH FACILITIES: PROVIDER AND PATIENT PERSPECTIVES

Background: The referral-back program (RBP) is a program for chronic outpatient patients at hospitals to return to access services at first-level health facilities (Primary Healthcare Centers/ PHC) once their condition has been declared stable by the doctor. However, data indicate that many hospitals and clinics in Denpasar City have not met the RBP target. Aims: This study aimed to explore the implementation of RBP and the challenges faced by providers and patients. Methods: Conducted in March 2023, this study used a qualitative approach with in-depth interviews. The sample was determined purposively, consisting of 13 informants. The data were analyzed using the thematic method. Results: From the provider's perspective, issues included low commitment of medical staff, lack of coordination between the hospital and PHC, limited supply of RBP drugs at the PHC, absence of Standard Operating Procedures (SOPs), and ignorance of notifications regarding potential RBP patients. Moreover, from the patient's perspective, challenges included low patient knowledge about RBP, proximity of the patient's house to the hospital so that patients tend to visit the hospital, difficulty in obtaining RBP drugs at PHC, and ineffective procedures. Conclusion: To overcome these obstacles, coordination, and improvement of RBP are needed through the preparation of SOPs and determination of RBP patient criteria. Keywords: barrier, implementation, referral-back program

Patient perspectives on dietitians’ role in nutrition management among cancer patients: Implications for proactive care and communication

Objective: This study aimed to determine patients’ perspectives regarding the role of dietitians in nutrition management. Methods: This study was conducted at our hospital’s oncology outpatient clinics. It used a questionnaire previously reported in the literature. One hundred sixty-two adult volunteers were included in this study. Patients’ knowledge of nutritional information, preferences for nutrition care, and perspectives on the dietitian’s role were measured. Descriptive statistics were used to describe the continuous variables. The degree of agreement was assessed using a 5-point Likert scale. Results: Nutritional care was a high priority for most volunteers (74.7%). Almost half of the patients expressed a need for dietitians to address their dietary challenges proactively. Most patients (64.2%) first met with a dietitian during ongoing treatment. They emphasized the need for frequent meetings and were willing to be referred to a dietitian earlier in their treatment. Conclusions: Most patients are referred to a dietitian after malnutrition, indicating the need for earlier intervention. Patients strongly desire improved communication among the healthcare team members regarding their nutritional concerns. Proactive nutritional management can reduce the incidence of malnutrition and enhance patient outcomes.

The value of real world evidence and pragmatic trials in advanced prostate cancer- insights from the electronic Prostate Cancer Australian and Asian Database

Prostate cancer is a common malignancy with an increasing incidence in ageing populations. However, older patients with prostate cancer are often underrepresented in traditional clinical trials. The electronic Prostate Cancer Australian and Asian Database (ePAD) is a multi-centre, multi-national prospective clinical registry, that records real world data from a broader population. An analysis of the first 753 metastatic castration-resistant prostate cancer (mCRPC) patients within ePAD demonstrated that 43% were aged 75 years and older. Older patients were more likely to have comorbidities including ischemic heart disease, diabetes and previous stroke. Treatment outcomes were similar in all age groups. However, older patients receiving chemotherapy were more likely to stop treatment due to toxicity. Furthermore, in a smaller ePAD analysis involving additional chart reviews within 3 high volume centres, at least one relative or absolute contraindication to abiraterone was seen in 72% of our cohort and with enzalutamide in 14%. In total, 47% had potential clinically significant drug interactions with abiraterone and 67% with enzalutamide. Registry-based randomised controlled trials (RRCTs) are a novel trial methodology aiming to bridge the gap between retrospective registry analyses and traditional randomised controlled trials. We conducted the REAL-Pro study in advanced prostate cancer, comparing cognition, depression and falls risk between CRPC patients receiving abiraterone or enzalutamide. The study closed early due to slow recruitment and a changing treatment landscape, highlighting the need for further research to understand clinician and patient perspectives towards pragmatic trials such as RRCTs and subsequently develop strategies to optimise future trial design and recruitment.

Who is the PROM King? Patient-reported Outcome Measures in Pediatric Musculoskeletal Oncology: A Systematic Review.

Patient-reported outcome measures (PROMs) are important companions to traditional, physician-reported measures. The purpose of this study was to systematically review and identify PROMs used in pediatric musculoskeletal oncology and evaluate these instruments. A systematic literature review was conducted for studies pertaining to pediatric musculoskeletal tumors from 2010 to 2024. Two experts selected eligible papers for inclusion through a systematic approach. PROMs used in the eligible papers were cataloged, and the top 10 most frequently used instruments were evaluated with Evaluating Measures of Patient-Reported Outcomes (EMPRO), which is a standardized evaluation tool for PROs. A total of 316 publications were included in the final analysis, reporting a total of 82 unique PROMs. Of the papers, 24% reported no PROMs, whereas 67% of the instruments were only reported once. Nine out of the 10 top PROMs scored over 50 on EMPRO, meeting the minimum acceptable criteria. Musculoskeletal Tumor Society, Toronto Extremity Salvage Score, Disabilities of the Arm, Shoulder, and Hand (DASH), and Quick DASH were disease-specific instruments scoring high on EMPRO. Short Form-36, Pediatric Quality of Life Questionnaire, Quality of Life Questionnaire-30, BSI-18, and TNO AZL Child Quality Of Life met the requirements in the general instruments. Short Form-12 was the lowest-scored PROM. Our results show minimal consensus on the ideal PROM in pediatric musculoskeletal oncology. We recommend using instruments that are already in widespread use instead of obscure PROMs, which defy the purpose of reporting outcomes from a patient perspective. All 4 disease-specific instruments scored highly and are already widely used, including Musculoskeletal Tumor Society, Toronto Extremity Salvage Score, DASH, and Quick DASH. However, we found no consensus on general instruments. With the development and increasing popularity of Patient-Reported Outcomes Measurement Information System, it may replace other general instruments that are proprietary, unreliable, or not developed with pediatric patients in mind. Level IV-systematic review of level II to IV studies.

Integrating Telemedicine in Botulinum Toxin Type-A Treatment for Spasticity Management: Perspectives and Challenges from Italian Healthcare Professionals

(1) Background: Telemedicine is a vital tool for enhancing healthcare accessibility and outcomes at reduced costs. This study aimed to assess the usability of the Maia Connected Care telemedicine platform for managing spasticity in patients receiving botulinum toxin type-A, focusing on the perspectives of Italian physiatrists with expertise in this treatment. (2) Methods: Conducted from March 2023 to June 2023, this multicenter survey involved 15 Italian physicians who used the platform for teleconsultations. Data collected included demographic details, responses to the Telemedicine Usability Questionnaire, and physician insights on patient satisfaction, treatment effectiveness, and implementation challenges in telehealth. (3) Results: The platform demonstrated high usability, with strong physician satisfaction due to its user-friendly interface and quality of interactions. A majority expressed willingness to continue telehealth for spasticity management, noting its effectiveness in improving patient satisfaction and outcomes. Challenges included replicating the depth of in-person consultations and addressing issues like reimbursement and telehealth standardization. (4) Conclusions: This study highlights telemedicine’s potential for spasticity management and clinician satisfaction, while underscoring the need for improvements in simulating in-person experiences and addressing systemic issues. The absence of patient perspectives represents a limitation, advocating for future research to optimize telemedicine practices and evaluate long-term clinical impacts.