Patient-centered Perspective Research Articles

Preoperative Psychopharmacological Treatment is Not a Risk factor for Poorer Patient-Reported Improvements 12 months After Hip or Knee Arthroplasty: A Multicenter Registry-Based Cohort study of 7,247 Procedures

BackgroundPreoperative psychopharmacological treatment (PPT) has been associated with increased hospital length of stay and readmission rate after hip and knee arthroplasty. However, little is known regarding the association between PPT and improvements in patient-reported outcomes postoperatively in a multicenter fast-track setting. Thus, the primary objective was to investigate whether PPT is a risk factor for poorer patient-reported improvements 12 months after surgery. Secondary objectives included assessment of additional time points and subgroups of PPT. MethodsThis multicenter registry-based cohort study included 4,021 primary hip and 3,226 primary knee arthroplasties performed from 2016 to 2020 at three fast-tack departments in Denmark due to primary osteoarthritis. The Oxford Hip/Knee Score (OHS/OKS), EQ-5D-3/5L, and EQ visual analog scale (VAS) were collected at baseline and three, six, 12, and 24 months after surgery. Exposure status was assigned using the Danish National Prescription Registry. Marginal mean differences (MD) with 95% confidence intervals (CI) were estimated using multilevel Tobit regression and adjusted for age, sex, and the Charlson Comorbidity Index obtained from the Danish National Patient Register. ResultsNo associations were found between PPT and improvements in OHS (MD -0.5, CI -1.4 to 0.4) or OKS (MD -0.3, CI -1.2 to 0.5) after 12 months. However, PPT was associated with lower baseline OHS (MD -1.4, CI -2.2 to -0.6) and OKS (MD -2.1, CI -2.9 to -1.3), and 12 month follow-up OHS (MD -1.9, CI -2.8 to -1.1) and OKS (MD -2.4, CI -3.2 to -1.6). Similar findings were observed at other time points, using EQ-5D-3/5L or EQ VAS, and when evaluating PPT subgroups. ConclusionIn hip and knee arthroplasty, PPT was not a risk factor for poorer patient-reported improvements 12 months after surgery. However, PPT was associated with marginally poorer baseline and follow-up scores. Thus, arthroplasties remain effective treatments despite PPT from a patient-centered perspective.

A Patient-Centered Perspective on Changes in Personal Characteristics After Deep Brain Stimulation

Deep brain stimulation (DBS) results in improvements in motor function and quality of life in patients with Parkinson disease (PD), which might impact a patient's perception of valued personal characteristics. Prior studies investigating whether DBS causes unwanted changes to oneself or one's personality have methodological limitations that should be addressed. To determine whether DBS is associated with changes in characteristics that patients with PD identify as personally meaningful. This cohort study assessed changes in visual analog scale (VAS) ratings reflecting the extent to which patients with PD manifested individually identified personal characteristics before and 6 and 12 months after DBS at a large academic medical center from February 21, 2018, to December 9, 2021. The VAS findings were tailored to reflect the top 3 individually identified personal characteristics the patient most feared losing. The VASs were scored from 0 to 10, with 0 representing the least and 10 the most extreme manifestation of the trait. Change scores were examined at the individual level. Content analysis was used to code the qualitative data. Qualitative and quantitative analyses were performed from January 12, 2019 (initial qualitative coding), to December 15, 2023. Deep brain stimulation. The primary outcome variable was the mean VAS score for the top 3 personal characteristics. The secondary outcome was the incidence of meaningful changes on the patients' top 3 characteristics at the individual level. Fifty-two of 54 dyads of patients with PD and their care partners (96.3%) were recruited from a consecutive series approved for DBS (36 patients [69.2%] were male and 45 care partners [86.5%] were female; mean [SD] age of patients, 61.98 [8.55] years). Two patients and 1 care partner were lost to follow-up. Increases in the mean VAS score (indicative of greater manifestation of [ie, positive changes in] specific characteristics) were apparent following DBS for ratings of both the patients (Wald χ2 = 16.104; P < .001) and care partners (Wald χ2 = 6.746; P < .001) over time. The slopes of the changes for both the patient and care partners were correlated, indicating agreement in observed changes over time. The individual level analyses indicated that scores for most patients and care partners remained the same or increased. In this cohort study, participants reported greater (more positive) manifestations of individually identified, valued characteristics after DBS. These findings may be relevant to informing decision-making for patients with advanced PD who are considering DBS.

Effect of treatment of transverse maxillary deficiency using rapid palatal expansion on oral health-related quality of life in children: complementary results for a controlled clinical trial.

To evaluate the effect of rapid palatal expansion (RPE) using Haas-type expanders on children's oral health-related quality of life (OHRQOL) and compare said effect with that previously reported for the use of Hyrax-type expanders. Forty participants aged 8-10 years with transverse maxillary deficiency were treated using Haas appliances. OHRQOL was measured using the CPQ8 - 10 before RPE, during RPE (T1), at the end of RPE (T2), and 1 month after appliance removal (T3). Generalized mixed models were fitted to assess the effect of the Haas-type expander compared to previously collected data (a nontreated and a Hyrax-type expander-treated group). RPE with Haas-type appliances had a negative impact on overall OHRQOL at T1 and T2 (P = 0.001), and a positive impact at T3 (P = 0.001). The Haas-type expander had a significantly greater negative impact on OHRQOL than the Hyrax-type appliance during RPE. At T1, overall scores using the Haas-type expander were 1.08 times the scores using the Hyrax-type expander (i.e., 8% increase; 95% CI, 1.01-1.17; P = 0.033). Patients using the Haas appliance had 1.24 times the scores of those using Hyrax-type devices for the oral symptoms domain at T1 (i.e., 24% increase; 95% CI, 1.06-1.46; P = 0.009). Correction of the transverse maxillary deficiency by RPE using the Haas appliance in children 8-10 years improves OHRQOL. The Haas- and Hyrax-type devices temporarily worsen OHRQOL during treatment, however, the negative impact is less with the Hyrax-type expander than with the Haas-type expander, because it causes fewer negative oral symptoms. From a patient-centered perspective, the use of the Hyrax over the Haas appliance may be suggested as it causes less negative oral symptoms during use.

Differences in Success Rate of Two-Stage Revision for Periprosthetic Joint Infection of the Knee Depending on the Applied Definition

BackgroundSuccess rates of two-stage exchange arthroplasty are subject to substantial variance in the literature. An explanation is the lack of a universally accepted definition of what constitutes treatment success for periprosthetic joint infection. Therefore, the main objective of this study was to assess success rates, applying four definitions to identify the one definition that best captures “true” success from both a clinical and patient-centered perspective. MethodsThis was a retrospective study investigating the outcome of a consecutive series of 78 chronic knee periprosthetic joint infections that were treated with a two-stage revision at a single center between 2017 and 2020. Kaplan-Meier survival analyses were conducted to estimate success rates. ResultsAfter a mean follow-up of 36 months (range, 25 to 60), 64 patients (82%) were reimplanted after a mean interim period of 90 days (range, 22 to 201). There was one patient (1%) lost to follow-up, and the overall mortality was 15% (n = 12). Kaplan-Meier survival analyses were used to estimate treatment success at two and three years: implant survival was 93% (95% confidence interval [CI]: 82 to 97) and 87% (95% CI: 73 to 94), infection control was 90% (95% CI: 79 to 95) and 87% (95% CI: 73 to 93), success according to Delphi criteria was 88% (95% CI: 78 to 94), and success according to Musculoskeletal Infection Society criteria was 65% (95% CI: 53 to 74) at both timepoints. ConclusionsSuccess rates were ranging between 65 and 93% depending on the applied definition, highlighting the need for universal success criteria. This variability mainly results from the differing approaches to patients who did not undergo reimplantation or passed away within a year of surgery. These patients exemplify cases of fatal treatment failures. Consequently, the Musculoskeletal Infection Society criteria should be routinely employed to accurately report the “true” success rate.

Patient-Reported Outcome Measures in Cancer Care

Patient-reported outcome measures (PROMs) come directly from the patient, without clinician interpretation, to provide a patient-centered perspective. To understand the association of PROM integration into cancer care with patient-related, therapy-related, and health care utilization outcomes. Searches included MEDLINE and MEDLINE Epub ahead of print, in-process, and other nonindexed citations; Embase databases (OvidSP); PsychINFO; CENTRAL; and CINAHL from January 1, 2012 to September 26, 2022. Randomized clinical trials (RCTs) that enrolled adult patients (ages 18 years and older) with active cancer receiving anticancer therapy using a PROM as an intervention. Pairs of review authors, using prepiloted forms, independently extracted trial characteristics, disease characteristics, and intervention details. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guideline was followed. Random-effects analyses were conducted. Overall mortality, health-related quality of life (HRQoL) measures, and hospital utilization outcomes. From 1996 to 2022, 45 RCTs including 13 661 participants addressed the association of PROMs with outcomes considered important to patients. The addition of a PROM likely reduced the risk of overall mortality (HR, 0.84; 95% CI, 0.72-0.98; moderate certainty), improved HRQoL (range 0-100) at 12 weeks (mean difference [MD], 2.45; 95% CI, 0.42-4.48; moderate certainty). Improvements of HRQoL at 24 weeks were not significant (MD, 1.87; 95% CI, -1.21 to 4.96; low certainty). There was no association between the addition of a PROM and HRQoL at 48 weeks. The addition of a PROM was not associated with reduced ED visits (OR, 0.74; 95% CI, 0.54-1.02; low certainty) or hospital admissions (OR, 0.86; 95% CI, 0.73-1.02; low certainty). The findings of this study suggest that the integration of PROMs into cancer care may improve overall survival and quality of life.

Recurrence of primary sclerosing cholangitis in the graft

Primary sclerosing cholangitis (PSC) is a disease characterized by inflammation, fibrosis and obliteration of both intra- and extrahepatic bile ducts, accompanied by cholestasis, with further outcome in biliary cirrhosis of the liver, cholangiocarcinoma. The pathogenesis of the disease is poorly understood, but, according to various sources, it involves genetic factors, innate and adaptive immunity mechanisms, the toxic effects of hydrophobic bile acids and, possibly, intestinal dysbiosis. The strong association with inflammatory bowel disease is associated with a significantly increased risk of colorectal cancer, which, along with cholangiocarcinoma, represents the most significant diagnostic challenge in the long-term management of PSC. The diagnosis of PSC is established based on the identification of typical cholangiographic lesions of the bile ducts and the exclusion of secondary causes of sclerosing cholangitis. Complex pathophysiology, heterogeneity of clinical features and the rare nature of the disease have led to the lack of effective therapy to date; there are no treatment algorithms, but a course of ursodeoxycholic acid in doses of 17–23 mg/kg/day can be prescribed for up to a year in order to monitor the dynamics of the decrease in levels serum alkaline phosphatase. A number of drugs are under investigation, including FXR (farnesoid X receptor) agonists with choleretic and antimicrobial properties. Clinically significant stenoses can be successfully treated with interventional endoscopy, but liver transplantation (LT) is currently the only curative treatment with a high survival rate. According to various literature data, 20–25% of patients develop disease relapse in the graft. Our case report of recurrent PSC in a patient 5 years after orthotopic LT provides an overview of management options from a practical, patient-centered perspective.

The Urological Tribulations of Michel de Montaigne: How the Essayist's Stones Influenced His Writings

ObjectiveTo explore how Michel de Montaigne’s battle with urolithiasis influenced his writings and philosophical outlook during the Renaissance period. Materials and MethodsThe study examines historical texts, Montaigne’s personal essays, and contemporary medical literature from the Renaissance era. A comprehensive review of Montaigne’s extensive travels across Europe, interactions with prominent physicians, and the various treatments he sought for urolithiasis is conducted. The analysis focuses on how these experiences shaped his literary work and philosophical reflections. ResultsMontaigne’s struggle with urolithiasis began at the age of 45, profoundly impacting his life and writings. His journey through France, Germany, Switzerland, Austria, and Italy in search of relief, along with consultations with renowned physicians such as Félix Platter and Girolamo Borro, significantly influenced his philosophical inquiries into human suffering and mortality. Montaigne’s detailed accounts of his condition, describing 19 episodes of renal colic, offered early patient-centered perspectives in medical literature, highlighting the importance of understanding the psychological and emotional dimensions of illness. His therapeutic use of thermal baths and other non-invasive treatments reflected the medical practices of the time. ConclusionMontaigne’s experience with urolithiasis not only shaped his philosophical essays but also underscored the importance of empathetic and holistic patient care. His writings emphasize the need for integrating patient narratives into medical practice, a concept that remains crucial in contemporary healthcare. Montaigne’s legacy continues to inspire a compassionate approach to urological care, emphasizing the interconnected nature of physical and emotional well-being, and advocating for a more patient-centered perspective in medical treatments.

Using action research and a community-academic partnership to understand clinical trial participation: a patient-centered perspective

BackgroundClinical trials that are patient-centered appear to be more successful (e.g., clinical outcomes, improved communication, mutual empowerment, changed attitudes), thus, action research may be a field of importance. The current study explores the Formation and Execution of Activities phases of a community-academic partnership (CAP).MethodsMembers consisted of industry stakeholders, a healthcare/academic institution, and patients/families with lived experiences as cancer survivors and/or caregivers. Retrospectively, CAP members described the facilitating and/or hindering factors present in the partnership development. A document review process was used. Field notes from three CAP meetings, which focused on understanding clinical trial participation, were analyzed using a thematic approach.ResultsSeven facilitating and three hindering factors were present. Interpersonal (vs. operational) processes were referenced as influential facilitating factors more often. Themes that emerged included ‘trials as a treatment option’, ‘leaving a legacy’, and ‘timing is critical.’ConclusionThis study provides a patient-centered perspective on barriers/challenges of clinical trial participation and how to improve future perceptions.

Living with rare genetic disease during the COVID-19 pandemic: A qualitative study of adolescents and young adults with Li-Fraumeni syndrome

BackgroundThe COVID-19 pandemic caused large-scale shifts in healthcare access and delivery that impacted the availability of routine care, such as cancer screening. Vulnerable populations, including those with rare cancer-prone genetic disease, faced considerable difficulties in managing their cancer risk. Studies characterizing the specific impacts of the pandemic on physical, mental, and emotional well-being for individuals with rare cancer-prone syndromes are emerging. This study used a patient-centered perspective to characterize how young adults with Li-Fraumeni syndrome (LFS), an inherited cancer predisposition syndrome with nearly 100 % lifetime risk of cancer, managed their physical and mental health during the first year of the COVID-19 pandemic. MethodsThis exploratory, qualitative cohort study was conducted between March and July of 2021 as part of the National Cancer Institute's Li-Fraumeni Study. Thirty adolescents and young adults (22 female, 8 male, median age 31 years, range 18–41) with a confirmed pathogenic TP53 variant completed a semi-structured qualitative interview. An interdisciplinary team conducted Thematic Content Analysis on verbatim transcribed data. ResultsMost participants (22/30, 77 %) completed cancer screening during the first year of the pandemic, with a median perceived delay of 5 months (range 2–12 months) and with financial COVID-19-related burden (55 %). While participants reported satisfaction with telehealth-based services, they also reported challenges establishing new clinical relationships and a clear preference for in-person clinical care. Most participants reported negative or mixed impacts of COVID-19 on mental health (21/30, 70 %). Social network changes were reported by 22 (73 %), and almost all participants experienced negative or mixed emotions such as loss, grief, and isolation, to adaptations necessitated by COVID-19 in their social structure. ConclusionsThe COVID-19 pandemic had detrimental effects on the physical, emotional, and social health in young adults with Li-Fraumeni, including disruptions in care. These data highlight the need for integrative strategies to be in place prior to future pandemics to prioritize and support vulnerable populations, such as those with rare disease, and to manage unforeseen large-scale shifts in healthcare access and social structure.

Patient-centered perspectives on perioperative care

IntroductionThe collection and evaluation of patient-reported outcomes is essential to the development of patient and family centered care. Current patient surveying techniques are limited by delayed response times and restriction to specific health systems. The use of random-domain intercept technology (RDIT), by Real-Time Interactive World-Wide Intelligence (RIWI, Toronto, ON, Canada) mitigates current barriers by creating a dynamic real-time feedback environment and providing a mass sampling technique.MethodsRDIT was employed to survey a wide sample of respondents across the United States (US). Respondents who self-identified as having had a surgical procedure or cared for someone having a surgical procedure were included in the analysis.Results1,004 participants completed the survey and answered questions regarding demographics, perioperative details, sentiments on postoperative recovery, postoperative clinical endpoints, sentiments on healthcare professionals, and opinions on future surgical care.DiscussionThe results of this cross-sectional study identified areas with potential for improvement in the patient perioperative experience that could improve the patient experience. This novel use of RDIT provided a valuable tool for real-time feedback and mass sampling allowing the creation of a dynamic healthcare environment that fosters timely and targeted improvements to patient experiences and outcomes.

The Heterogeneity of Symptom Burden and Fear of Progression Among Kidney Transplant Recipients: A Latent Class Analysis.

Kidney transplant recipients (KTRs) may experience symptoms that increase their fear of progression (FoP), but a dearth of research examines the issue from a patient-centered perspective. Our study aimed to first determine the category of symptom burden, then to explore the differences in characteristics of patients in different subgroups, and finally to analyze the impact of symptom subgroup on FoP. Sociodemographic and Clinical Characteristics, Symptom Experience Scale, and Fear of Progression Questionnaire-Short Form were used. Latent class analysis was used to group KTRs according to the occurrence of symptoms. We used multivariate logistic regression to analyze the predictors of different subgroups. The differences in FoP among symptom burden subgroups were analyzed by hierarchical multiple regression. Three subgroups were identified, designated all-high (20.5%), moderate (39.9%), and all-low (39.6%) according to their symptom occurrence. Multivariate logistic regression showed that gender, post-transplant time, per capita monthly income, and hyperuricemia were the factors that distinguished and predicted the all-high subgroup (P < 0.05). Hierarchical multiple regression showed that symptom burden had a significant effect on FoP (class1 vs class3: β = 0.327, P < 0.001; class2 vs class3: β = 0.104, P = 0.046), explaining the 8.0% variance of FoP (ΔR2 = 0.080). KTRs generally experience moderate or low symptom burden, and symptom burden is an influencing factor in FoP. Identifying the traits of KTRs with high symptom burden can help clinicians develop targeted management strategies and ease FoP of KTRs.

Rethinking parameters of “success” in breaking bad news conversations from patient’s perspective: the successful delivery process model

PurposeStudies that focus on improving the difficult process of breaking bad news in oncology should include the patient perspective and be guided by appropriate outcome measures. Endpoints such as “patient satisfaction” fall short to capture the complex nature of breaking bad news (BBN) conversations. However, this is true of many studies. The present study attempts to develop a framework model from a new, patient-centered perspective, which can be applied equally in clinical practice and in education.MethodsSemi-structured in-depth interviews with twelve cancer patients were conducted. Transcripts were analyzed by “qualitative content analysis” following Mayring. Outcomes were further extrapolated in interpretational steps, and a model of “success” from patients view in BBN was developed.ResultsTwo central needs of the patients could be identified: understanding and feelings. Their fulfillment depends on two groups of variables: first, structural characteristics, such as the inevitable shock, individuality, and processability; second, strongly influenceable variables, such as relationship, transfer of knowledge, and atmosphere. From these results, a framework model for successful breaking of bad news from the patient’s perspective was developed: The successful delivery process model (SDP model).ConclusionAs a basic model for the framework for breaking bad news from the patient’s perspective, the SDP model can be applied to many different situations in oncology and help to frame the difficult conversations by tailoring the BBN conversations on determinants that favorably influence the process in a patient centered manner. In this sense, the model can be useful in clinical practice as well as in education.

Addressing Patient Requests to Add Dietary Supplements to Their Cancer Care-A Suggested Approach.

Dietary supplements are widely utilized by cancer patients as part of a complementary and integrative approach to their healthcare. However, a significant portion of patients refrain from discussing their supplement use with their physicians, often due to the perceived indifference or negativity of their healthcare providers. This communication gap exposes patients to unreliable information sources and potential risks associated with uninformed supplementation. As the healthcare landscape evolves, there is an increasing recognition of the pivotal role that physicians play in guiding patients' healthcare decisions. A patient-centered perspective prioritizes the provision of evidence-based information tailored to the individual's needs. It advocates for open discussions about potential risks and fosters shared decision making, respecting patient autonomy. Additionally, this approach involves offering alternative options, documenting patient preferences, and ensuring ongoing support while coordinating with the healthcare team. To address these evolving needs, healthcare providers must adopt a transformative perspective, becoming expert guides who engage with their patients as informed and empowered participants. This revised approach emphasizes an open dialogue that balances presenting facts and acknowledging uncertainties surrounding dietary supplement use. Our narrative review of the literature underscores the importance of a practical approach, centered on transparent discussions and respect for patient autonomy. By following this approach, healthcare providers can empower patients to navigate the complexities of dietary supplement use within the context of cancer care, thereby safeguarding patient safety and overall well-being. Notably, our proposed tool highlights the utilization of reliable sources, the risk stratification of supplements, specific recommendations, and subsequent monitoring, providing a structured framework for informed decision making.

Back to basics: Practical strategies to reduce sensory overstimulation in the emergency department identified by adults and caregivers of children with autism spectrum disorder

IntroductionSensory overstimulation of autistic patients of all ages during an ED visit can ultimately lead to care escalation, but few studies have evaluated patient perspectives on improving the ED sensory experience across the age continuum. The purpose of this study was to explore patient-centered perspectives on reducing adult and pediatric autistic patients’ sensory stimulation during an ED visit. MethodsWe used a qualitative descriptive design to explore how autistic patients experience sensory disruption and recommendations to improve care. Data were analyzed inductively using an overall categorization of 6 senses (visual, auditory, touch, smell, taste, and proprioception). ResultsFourteen adults and 30 caregivers of children provided written responses to open-ended interview questions (n = 44). Participants suggested strategies to minimize the sensory disruption they experienced; however, an overarching recommendation was for clinicians to ask about their or their child’s preferences before delivering care or services. ConclusionBecause people with autism are more likely to visit an ED than their neurotypical counterparts, ED clinicians should be proficient in “sensory-friendly care.” A variety of evidence-based practical strategies and design approaches exist that can be leveraged to reduce the risk of care escalation; however, the most basic may be to prioritize asking patients and their caregivers about their preferences prior to providing care.

Lessons learned from SCOT-HEART, DISCHARGE, and PRECISE: a patient-centered perspective with implications for the appropriate use of CCTA.

Lessons learned from SCOT-HEART, DISCHARGE, and PRECISE: a patient-centered perspective with implications for the appropriate use of CCTA.

Joint evaluation of placebo and treatment effects in cluster randomized trials by causal inference models

The term placebo effect refers to the psychobiological effect of a patient's knowledge or belief of being treated. A placebo effect is patient-driven, which makes it fundamentally different from the usual treatment effect resulting from external actions. In modern clinical research, the presence of a placebo effect is often treated as a nuisance issue, something to be “adjusted away” in estimating a treatment effect of primary interest. However, from a patient-centered perspective, we believe that a possible placebo produces substantial improvements in patient-centered outcomes. Understanding placebo effects is therefore an important part of patient-centered outcomes research. The available methods for estimating placebo effects are designed for individually randomized trials and are not directly applicable to cluster randomized trials (CRTs). There are several challenges in estimating placebo effects in CRTs. A major challenge is the possible presence of interference within clusters, in the sense that a subject's outcome may depend on the beliefs subjects in the same cluster about treatment assignment (mentality) and therefore possible correlation in outcome and mentality among subjects exists in the same cluster. In this article, we extend the previously developed causal inference framework to also encompass CRTs, using the G-Computation and inverse probability weighting (IPW) approaches. We also develop methodologies and further extend the G-Computation and IPW approaches to handle missingness for jointly evaluating placebo effect and treatment-specific effect, specifically in the context of CRTs. The proposed methods are demonstrated in simulation studies and a cluster randomized trial on effect of fermented dairy drink.

Challenges of medical commodity availability in public and private health care facilities in the Upper East Region of Ghana: a patient-centered perspective

This article is a patient-centered comparison of medical ccommodities availability in public and private health care facilities in the Upper East (UER) of Ghana to determine if significant differences existed. A concurrent mixed method strategy was used where both quantitative and qualitative data were simultaneously collected, independently analysed and triangulated at the intepretation stage. Quantitative data were collected using a systematic sampling method where a total of 1500 patients (750 from public and 750 from private) health care facilities responded to the interviwer-administered questionnaires for this study. Exploratory factor analysis (EFA) was applied as a construct validation tool while a T-test was computed to compare if a significant difference existed between both type of patients. Qualitative data were collected from selected patients and heads of public and private healthcare facilities using an interview guide. The qualitative data were analysed using content analysis. The results indicated significant differences existed in the availability of medical commodities, frequency of medicine stock-outs, seasonality of medicine stock-outs, patients’ reaction to medicine stock-outs and communication about the medicine stock-outs to patients of private and public facilities. The biggest difference between the two groups of patients was how communication of medicines stock-outs was communicated to them.Health care facility managers in the region must focus seriously on training staff on how to improve communication of medicines stock-outs to patients.

The experience of living with malignant meningioma.

Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1-3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis. This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n=12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke's guidelines. Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals. We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients' identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.

Patients’ strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers–Danlos Syndrome

Purpose Chronic pain is a common feature of hypermobile Ehlers–Danlos Syndrome (hEDS), yet how patients assess and communicate their pain remains poorly understood. The objective of the present study was to explore the use of numeric pain assessment in individuals with hEDS, from a patient-centered perspective. Materials and methods Our analysis is based on in-depth qualitative interviews. The interviews were conducted over the phone. Our participants were patients living with hEDS (N = 35). Interviews were recorded, transcribed, and analyzed to identify factors related to their use of these pain assessment instruments. Results Three primary themes emerged from these data, namely, (1) confusion around the quantification of multidimensional pain, (2) the subjectivity of pain experience, and (3) a strategic use of assessments for practical purposes beyond the accurate representation of pain. Conclusions These results demonstrate the need for caution in relying exclusively on numeric pain assessment instruments. We conclude with a brief proposal for a clinical communication strategy that may help to address the limitations of numeric pain assessment that were identified in our interviews.

Interpretation Threshold Values for the Oxford Hip Score in Patients Undergoing Total Hip Arthroplasty: Advancing Their Clinical Use.

Patient-reported outcome measures such as the Oxford Hip Score (OHS) can capture patient-centered perspectives on outcomes after total hip arthroplasty (THA). The OHS assesses hip pain and functional limitations, but defining interpretation threshold values for the OHS is warranted so that numerical OHS values can be translated into whether patients have experienced clinically meaningful changes. Therefore, we determined the minimal important change (MIC), patient acceptable symptom state (PASS), and treatment failure (TF) threshold values for the OHS at 12 and 24-month follow-up in patients undergoing THA. This cohort study used data from patients undergoing THA at 1 public hospital between July 2016 and April 2021. At 12 and 24 months postoperatively, patients provided responses for the OHS and for 3 anchor questions about whether they had experienced changes in hip pain and function, whether they considered their symptom state to be satisfactory, and if it was not satisfactory, whether they considered the treatment to have failed. The anchor-based adjusted predictive modeling method was used to determine interpretation threshold values. Baseline dependency was evaluated using a new item-split method. Nonparametric bootstrapping was used to determine 95% confidence intervals (CIs). Complete data were obtained for 706 (69%) of 1,027 and 728 (66%) of 1,101 patients at 12 and 24 months postoperatively, respectively. These patients had a median age of 70 years, and 55% to 56% were female. Adjusted OHS MIC values were 6.3 (CI, 4.6 to 8.1) and 5.2 (CI, 3.6 to 6.7), adjusted OHS PASS values were 30.6 (CI, 29.0 to 32.2) and 30.5 (CI, 29.3 to 31.8), and adjusted OHS TF values were 25.5 (CI, 22.9 to 27.7) and 27.0 (CI, 25.2 to 28.8) at 12 and 24 months postoperatively, respectively. MIC values were 5.4 (CI, 2.1 to 9.1) and 5.0 (CI, 1.9 to 8.7) higher at 12 and 24 months, respectively, in patients with a more severe preoperative state. The established interpretation threshold values advance the interpretation and clinical use of the OHS, and may prove especially beneficial for registry-based evaluations of treatment quality. Prognostic Level IV . See Instructions for Authors for a complete description of levels of evidence.