Patient

(This article first appeared on the LA Progressive website on 12/14/2024.) On December 4th Brian Thompson the C.E.O. of UnitedHealthcare was shot and killed in Manhattan. Although the social-media response was mixed, it included some sympathy for the shooter (Luigi Mangione) and rage against health-insurance providers. According to a CBS report, Mangione possessed a three-page document that he wrote which outlined some of his views. He claimed that the U. S. had the "most expensive healthcare system in the world," but ranked only “42 in life expectancy." He also wrote that many U. S. corporations abuse our country in order to gain “immense profit” and reflect "corruption and greed." This essay considers three media responses to the shooting and Mangione’s arrest and crticism of the healthcare industry. While condemning the shooting, it agrees with some of the media responses that emphasize that profit-seeking in the healthcare industry has been overemphasized.

Objectives To assess health-related quality of life (HRQoL) across three renal replacement therapy modalities (preemptive transplant, non-preemptive transplant, and dialysis) in comparison with the healthy norm and other chronic health conditions, and to explore related patient factors. Study design All prevalent end-stage renal disease (ESRD) patients aged 8-18 years who spent at least 6 months on their current treatment modality in the Netherlands, Belgium, and part of Germany were approached to complete the Pediatric Quality of Life Inventory 4.0 (PedsQL™) questionnaire. We determined the differences between groups on PedsQL™ mean scores, the proportion of children with an impaired HRQoL (≥ 1 SD lower than the healthy norm), the proportion of problems on individual items of the PedsQL™, and the effect of time on current treatment. Linear regression models were used to explore determinants of HRQoL. Results 192 out of 278 patients (20% preemptive transplant, 58% non-preemptive transplant, 22% dialysis) filled in the PedsQL™ (response rate 69%). Independent of treatment modality, patients had significantly lower mean scores and consequently higher proportions of impaired HRQoL on almost all domains compared to the healthy norm and other chronic health conditions. Patients with a preemptive transplant only reported higher scores on physical health compared to the other treatment modalities. Having comorbidities was the most important determinant associated with lower HRQoL scores. Conclusion Dialysis and renal transplantation both have a severe impact on the HRQoL of children with ESRD. Physicians should be aware of this continuous burden. Furthermore, to develop tailored interventions for children with ESRD, qualitative studies are needed to gain more insight in the determinants of HRQoL in the different treatment modalities.

Acromegaly is associated with increased growth hormone (GH) and insulin-like growth factor-I (IGF-I) secretion which may support tumour development and growth. A 68-year-old woman was diagnosed with acromegaly due to typical clinical and hormonal characteristics. While contrast-enhanced MRI at diagnosis did not reveal a pituitary adenoma, a 5-mm lesion was identified on repeat scanning 13 months later. Abdominal and chest CT showed tumours of the stomach, right adrenal gland, and right lung. The CT also showed a hypodense lesion in the liver and heterogeneous echostructure of the thyroid gland with left lobe solid-cystic tumour. Somatostatin receptor scintigraphy revealed increased tracer accumulation in the right thyroid lobe. No tracer accumulation was noted at the location of the other tumours. The resected stomach, adrenal, chest, and thyroid lesions did not show GH secretion. The patient refused pituitary surgery, and her acromegaly is currently well-controlled with somatostatin analogue therapy. A CT scan 19 months later revealed a contrast-enhancing left kidney tumour that was a G1-grade clear cell carcinoma. Four years after the acromegaly diagnosis multiple myeloma were diagnosed with secondary renal amyloidosis. Genetic screening for a paraganglioma gene panel, AIP, MEN1, and CDKN1B mutations were negative. A next-generation cancer panel containing 94 cancer genes did not identify any possible unifying gene abnormality in her germline DNA. Coexistence of acromegaly and numerous other tumours suggests a common aetiology of these disorders. However, no genetic abnormality could be identified with the tests that have been performed.

Background To validate a widely used health outcomes instrument for patients with chronic kidney disease and on dialysis, the Kidney Disease Quality of Life questionnaire (KDQOL-36), in English-speaking haemodialysis patients in Singapore. Methods This study is a secondary data analysis using the KDQOL-SF (version 1.3) data collected from a cross-sectional survey of haemodialysis patients in Singapore. Cronbach's a was used to test internal consistency reliability. Multi-item scales were assessed using item-to-scale correlation and factor analysis. Both confirmatory and exploratory factor analyses were performed separately for generic and disease-targeted scales. Construct validity was assessed by correlation between disease-targeted and generic scales. Criterion validity was assessed by correlation of the physical component summary (PCS-12) and mental component summary (MCS-12) from KDQOL-36 with the corresponding PCS-36 and MCS-36 from the KDQOL-SF. Results Three hundred ninety-four patients who completed the interviews in English [male 55.8 %, mean age (SD) 52.4 (11.7) years] were involved. Kidney disease scales exhibited desirable internal consistency (Cronbach's a 0.822-0.906) and item-to-scale correlation (range 0.763-0.903), and a three-factor model fit the data well [comparative fit index (CFI) 0.934, root mean square error of approximation (RMSEA) 0.085]. For the generic Short Form 12 Health Survey (SF-12) items, a two-factor model (physical and mental) showed poor overall fit, but a threefactor structure (role, physical and mental functions) achieved good model fit (CFI 0.999, RMSEA 0.027). Correlation between disease-targeted and generic scales was weak to moderate (range 0.286-0.418). Correlation between SF-12 and SF-36 was 0.750 for PCS and 0.797 for MCS. Conclusion The English version of the KDQOL-36 appears to be reliable and valid to measure quality of life for haemodialysis patients in Singapore. Key Points for Decision Makers • The English version of the Kidney Disease Quality of Life (KDQOL-36) is a valid tool for assessing quality of life for haemodialysis patients in Singapore. • The kidney disease scales of the KDQOL-36 showed desirable psychometric properties. • The generic scales of the KDQOL-36 seem to measure slightly different constructs in Asian patients.

This article aims to gain a better understanding on micro processes of how frontline professionals use institutional logics in their day-to-day work. It contributes to the growing literature on the dynamics between institutions and the professional frontline. To further develop this field of study, a conceptual framework is presented that integrates institutional logics, vocabularies of practice, and narratives as central concepts. By adopting a composite narrative approach and identifying vocabularies of practice, the article interprets how frontline professionals make use of different logics to make sense of a new principle introduced in their professional field. Findings are based on a case study of professional patient collaboration in healthcare. The article composes five narratives that act as vehicles through which healthcare professionals use five logics: a medical professional logic, managerial logic, commercial logic, consultation logic, and patient-centeredness logic. It ...

ABSTRACTAimPatients with autosomal dominant polycystic kidney disease (ADPKD) are at increased risk of premature mortality, morbidities and complications, which severely impair quality of life. However, patient‐centered outcomes are not consistently reported in trials in ADPKD, which can limit shared decision‐making. We aimed to identify outcomes important to patients and caregivers and the reasons for their priorities.MethodsNominal group technique was adopted involving patients with ADPKD and caregivers who were purposively selected from eight centres across Australia, France and the Republic of Korea. Participants identified, ranked and discussed outcomes for trials in ADPKD. We calculated an importance score (0–1) for each outcome and conducted thematic analyses.ResultsAcross 17 groups, 154 participants (121 patients, 33 caregivers) aged 19 to 78 (mean 54.5 years) identified 55 outcomes. The 10 highest ranked outcomes were: kidney function (importance score 0.36), end‐stage kidn...

Forensic psychiatric care must be provided within the least restrictive setting possible, whilst simultaneously maintaining appropriate levels of security. This presents particular challenges for the design of forensic psychiatric hospitals, which are required to provide both a therapeutic and a safe material environment, often for extended periods of treatment and rehabilitation. By taking into consideration variable trends in psychiatric service provision and myriad clinical, legal and ethical issues, interdisciplinary forensic facility design teams are at the very forefront in implementing the latest developments in medical architecture. Also, although there are significant differences in how forensic psychiatric services are organized around the world, the underlying clinical challenges and increasingly researchbased treatment principles are similar worldwide; it is therefore becoming less acceptable to operate and develop national forensic services without reference to international standards. Accordingly, we here review the literature on what features of forensic psychiatric facilities best serve the needs of those patients who need to rely on them, and we present a systematic and widely applicable approach to the complex and costly challenge of modern forensic psychiatric hospital design.

Background New therapeutic options are needed for patients with psoriasis. Tofacitinib, an oral Janus kinase inhibitor, is being investigated as a treatment for moderate-to-severe chronic plaque psoriasis. In this study, we aimed to compare two tofacitinib doses with high-dose etanercept or placebo in this patient population. Methods In this phase 3, randomised, multicentre, double-dummy, placebo-controlled, 12-week, non-inferiority trial, adult patients with chronic stable plaque psoriasis (for ≥12 months) who were candidates for systemic or phototherapy and had a Psoriasis Area and Severity Index (PASI) score of 12 or higher and a Physician's Global Assessment (PGA) of moderate or severe, and had failed to respond to, had a contraindication to, or were intolerant to at least one conventional systemic therapy, were enrolled from 122 investigational dermatology centres worldwide. Eligible patients were randomly assigned in a 3:3:3:1 ratio to receive tofacitinib 5 mg or 10 mg twice daily at about 12 h intervals, etanercept 50 mg subcutaneously twice weekly at about 3-4 day intervals, or placebo. Randomisation was done by a computer-generated randomisation schedule, and all patients and study personnel were masked to treatment assignment. The co-primary endpoints were the proportion of patients at week 12 with at least a 75% reduction in the PASI score from baseline (PASI75 response) and the proportion of patients achieving a PGA score of "clear" or "almost clear" (PGA response), analysed in the full analysis set (all patients who were randomised and received at least one dose of study drug). This study is registered with ClinicalTrials.gov, number NCT01241591. Findings Between Nov 29, 2010, and Sept 13, 2012, we enrolled 1106 eligible adult patients with chronic plaque psoriasis and randomly assigned them to the four treatment groups (330 to tofacitinib 5 mg twice daily, 332 to tofacitinib 10 mg twice daily, 336 to etanercept 50 mg twice weekly, and 108 to placebo). Of these patients, 1101 actually received their assigned study medication (329 in the tofactinib 5 mg group, 330 in the tofacitinib 10 mg group, 335 in the etanercept group, and 107 in the placebo group). At week 12, PASI75 responses were recorded in 130 (39•5%) of 329 patients in the tofacitinib 5 mg group, 210 (63•6%) of 330 in the tofacitinib 10 mg group, 197 (58•8%) of 335 in the etanercept group, and six (5•6%) of 107 in the placebo group. A PGA response was achieved by 155 (47•1%) of 329 patients in the tofacitinib 5 mg group, 225 (68•2%) of 330 in the tofacitinib 10 mg group, 222 (66•3%) of 335 in the etanercept group, and 16 (15•0%) of 107 in the placebo group. The rate of adverse events was similar across the four groups, with serious adverse events occurring in seven (2%) of 329 patients in the tofacitinib 5 mg group, fi ve (2%) of 330 in the tofacitinib 10 mg group, seven (2%) of 335 in the etanercept group, and two (2%) of 107 in the placebo group. Three (1%) of 329 patients in the tofacitinib 5 mg group, ten (3%) of 330 in the tofacitinib 10 mg group, 11 (3%) of 335 in the etanercept group, and four (4%) of 107 patients in the placebo group discontinued their assigned treatment because of adverse events. Interpretation In patients with moderate-to-severe plaque psoriasis, the 10 mg twice daily dose of tofacitinib was non-inferior to etanercept 50 mg twice weekly and was superior to placebo, but the 5 mg twice daily dose did not show non-inferiority to etanercept 50 mg twice weekly. The adverse event rates over 12 weeks were similar for tofacitinib and etanercept. This study indicates that in the future tofacitinib could provide a convenient and well-tolerated therapeutic option for patients with moderate-to-severe plaque psoriasis.

Patients in health services have different behaviors in deciding to take advantage of health services. Patients used various considerations to make decisions based on the health products or services for re-treatment. The study aimed to analyze the factors that influence the patient's decision in using health services for re-treatment. This research was quantitative with cross-sectional design and conducted at Tanjung Pura Regional Hospital. The population was 3.946 people, and the sample were 247 respondents taken by using purposive sampling. Data analysis was univariate and bivariate using chi-square and multivariate using multiple logistic regression at the 95% confidence level (a= .05). The results showed that the factors that influenced the patient's decision to use health services for re-treatment at the Tanjung Pura Regional Hospital were the service quality of doctors / nurses (p= .000), distance (p=.049), facilities (p=0.000), and service speed (p = .000). The factor...

Male breast cancer (BC) is rare, managed by extrapolation from female BC. The International Male BC Program aims to better characterize and manage this disease. We report the results of part 1, a retrospective-joint-analysis of cases diagnosed during a 20-year-period. Patients with follow-up and tumor samples, treated between 1990-2010, in 93 centers/nine countries. Samples were centrally analyzed in three labs (UK, NL, US). Of 1822 patients enrolled, 1483 were analyzed; 63.5% were diagnosed between 2001-2010, 57 (5.1%) had metastatic disease (M1). Median age at diagnosis: 68.4 years. Of 1054 M0 cases, 56.2% were node-negative (N0) and 48.5% had T1 tumors; 4% had breast conserving surgery (BCS), 18% sentinel lymph-node biopsy; half received adjuvant radiotherapy; 29.8% (neo)adjuvant chemotherapy and 76.8% adjuvant endocrine therapy (ET), mostly tamoxifen (88.4%). Per central pathology, for M0 tumors: 84.8% ductal invasive carcinomas, 51.5% grade 2; 99.3% ER-positive; 81.9% PR-positi...

The purpose of this study was to illustrate the effects of music in pre-, peri-, and postoperative care. This study is a systematic literature study based on 22 scientific articles with quantitative methods. Music is an alternative treatment used in nursing care. Nurses could as a complement to routine pre-, peri-, and postoperative nursing have music interventions in mind, because an operation involves anxiety, fear and pain for many patients. The result of the study shows that music can reduce patients' anxiety, pain and improving their wellbeing and recovery. Music is also used as a tool for distraction. Some negative effects of the music could be seen as well. Something that nurses should have in mind is that music should be voluntary and that patients should have as big influence as possible regarding the music intervention. In order to improve positive effects the patients´ should choose their own type of music.

Objectives Our objective was to identify patient-informed value elements that can be used to make value assessment more patient centered. Methods Mixed methods were used iteratively to collect and integrate qualitative and quantitative data in a four-stage process: identification (stage 1), prioritization (stage 2), refinement (stage 3), and synthesis (stage 4). Qualitative methods involved one-on-one discussions with 14 patient stakeholders from diverse medical communities representing mental health, osteoporosis, blindness, lupus, eczema, oncology, chronic obstructive pulmonary disease, and hypercholesterolemia. Stakeholders completed guided activities to prioritize elements important to patient healthcare decision making. Responses were summarized descriptively as frequencies and proportions. Results Stakeholders identified 94 value elements in stage 1. Of these, 42 elements remained following the stage 2 prioritization and the stage 3 refinement. During the stage 4 synthesis, the 42 patient-informed value elements comprised the principal set of value elements that were organized by 11 categories: tolerability, disease burden, forecasting, accessibility of care/ treatment, healthcare service delivery, cost incurred on the patient, cost incurred on the family, personal well-being, stigma, social well-being, and personal values. The categories fell under five domains: short-and long-term effects of treatment, treatment access, cost, life impact, and social impact. Conclusions In total, 75% of the value elements in the conceptual model were patient derived and distinct from the elements used in existing value frameworks. Recommendations for tailoring, quantifying, and applying the patient-informed value elements in distinct patient communities are provided. This provides a foundation from which future research may test patient-informed value elements in existing value frameworks and economic evaluations.

Objectives-To investigate variation in caregiver preferences for their child's attention-deficit/ hyperactivity disorder (ADHD) care and to determine if their stated preferences align with current care management. Methods-Caregivers of a child aged 4-14 years and in care for ADHD were recruited from pediatric outpatient clinics and advocacy groups across the state of Maryland. Participants completed a survey collecting demographics, the child's treatment, and caregiver preferenceselicited using a best-worst scaling experiment (case 2). Latent class analysis was used to identify distinct preference segments and bivariate analyses were used to compare the association between segment membership with what the child was currently receiving for their ADHD. Results-Participants (n = 184) were predominantly White (68%) and the child's mother (84%). Most children had ADHD for 2 or more years (79%). Caregiver preferences were distinguished by two segments: continuous medication (36%) and minimal medication (64%). The two groups had very different preferences for when medication was administered (p < 0.001), but they had similar preferences for provider oriented and non-medication interventions (p > 0.05 for the caregiver behavior training, provider communication, provider specialty, and out-of-pocket costs). One third of the sample did not receive the preferred individualized education program and 42% of the minimal medication group reported using medication 7 days a week all year round.

Objectives-To investigate variation in caregiver preferences for their child's attention-deficit/ hyperactivity disorder (ADHD) care and to determine if their stated preferences align with current care management. Methods-Caregivers of a child aged four to 14 years-old and in care for ADHD were recruited from pediatric outpatient clinics and advocacy groups across the state of Maryland. Participants completed a survey collecting demographics, the child's treatment, and caregiver preferenceselicited using a best-worst scaling experiment (case 2). Latent class analysis was used to identify distinct preference segments and bivariate analyses were used to compare the association between segment membership with what the child is currently receiving for their ADHD. Results-Participants (N=184) were predominately white (68%) and the child's mother (84%). Most children had ADHD for two or more years (79%). Caregiver preferences were distinguished by two segments: Continuous Medication (36%) and Minimal Medication (64%). The two groups had very different preferences for when a medication treatment was administered (p<0.001), but they had similar preferences for provider-oriented and non-medication interventions (p>0.05 for the caregiver behavior training, provider communication, provider specialty and out-of-pocket costs). One-third of the sample did not receive the preferred individual education program and 42% of the minimal medication group reported using medication 7 days a week all year round. Conclusions-Although behavior management training and school accommodations aspects of an ADHD care plan are more important to caregivers that evidence-based medication treatment, 5. COMPLIANCE WITH ETHICAL STANDARDS This study was funded by a grant from the National Institute of Mental Health (R34-MH093502; PI: dosReis) Charles Cunningham's participation was supported by the Jack Laidlaw Chair in Patient-Centered Health Care. Charles Cunningham receives royalties from workshops and materials for COPE, a large group parenting program. He is a shareholder and receives salary support from BCFPI inc. which provides screening and outcome measures for children and youth. Susan dosReis, Xinyi Ng, John Bridges, Melissa Ross, Gloria Reeves and Emily Frosch have no other conflicts of interests to declare.

Active participation of stakeholders in health research practice is important to generate societal impact of outcomes, as innovations will more likely be implemented and disseminated in clinical practice. To foster a co-creative process, numerous frameworks and tools are available. As they originate from different professions, it is not evident that health researchers are aware of these tools, or able to select and use them in a meaningful way. This article describes the bottom-up development process of a compass and presents the final outcome. This Co-creation Impact Compass combines a well-known business model with tools from design thinking that promote active participation by all relevant stakeholders. It aims to support healthcare researchers to select helpful and valid co-creation tools for the right purpose and at the right moment. Using the Co-creation Impact Compass might increase the researchers' understanding of the value of co-creation, and it provides help to engage stakeholders in all phases of a research project.

Background There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. Methods We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. Results PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. Conclusion Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.

Inhibitori protonske pumpe (IPP) su lijekovi koji su u potpunosti promijenili nacin lijecenja stanja povezana s pojacanim lucenjem želucane kiseline ; pepticki ulkus, gastroezofagealna refluksna bolest, funkcionalna dispepsija, gastroprotekcija. Iako su IPP-ovi siroko propisivani lijekovi, posljednjih godina povecana pozornost posvecena je potencijalnim neželjenim ucincima ovih lijekova. Obzirom da sve veci broj bolesnika prima IPP-ove kao dio kronicne terapije za bolesti i stanja koja su povezana s pojacanim lucenjem želucane kiseline dugorocni potencijalno stetni ucinci ove skupine lijekova dobivaju sve vecu pozornost pri cemu vecina istraživanja upucuje na to da su određeni bolesnici u povecanom riziku.

ABSTRACTAimPatients with autosomal dominant polycystic kidney disease (ADPKD) are at increased risk of premature mortality, morbidities and complications, which severely impair quality of life. However, patient‐centered outcomes are not consistently reported in trials in ADPKD, which can limit shared decision‐making. We aimed to identify outcomes important to patients and caregivers and the reasons for their priorities.MethodsNominal group technique was adopted involving patients with ADPKD and caregivers who were purposively selected from eight centres across Australia, France and the Republic of Korea. Participants identified, ranked and discussed outcomes for trials in ADPKD. We calculated an importance score (0–1) for each outcome and conducted thematic analyses.ResultsAcross 17 groups, 154 participants (121 patients, 33 caregivers) aged 19 to 78 (mean 54.5 years) identified 55 outcomes. The 10 highest ranked outcomes were: kidney function (importance score 0.36), end‐stage kidn...

Variation in the level of mtDNA heteroplasmy in adult tissues is commonly seen in patients with a mixture of wild-type and mutant mtDNA. A mixture of different mtDNA variants may influence such variation and cause mtDNA segregation bias. We analyzed cellular heterogeneity in embryonic stem cells (ESCs) derived from a polymorphic mouse model containing NZB and BALB mtDNA genotypes. In ESCs, inter-colony heterogeneity varied up to 61%, whereas intra-colony heterogeneity varied up to 100%. Three out of five cell lines displayed nearly homoplasmic BALB and NZB mtDNA haplotypes in differentiated single cells. The proportion of NZB mtDNA genotype increased with progressive passaging (0.39%; p = 0.002). These results demonstrate the bimodal segregation of mtDNA haplotypes, indicating the occurrence of tissues with variable levels of heteroplasmies in individuals with mtDNA mutations. Furthermore, proliferation of one mtDNA genotype over another may pose the risk of accumulating mutant mtDN...

Dyspnea or breathlessness is a symptom of a plethora of diseases; despite that its management poses a challenge, it leads to frequent hospitalizations and a poor quality of life. In lung cancer, dyspnea may appear at any time of the disease but mainly during the end-of-life period. This article aims to explore the effectiveness of home-based educational programs for the management of dyspnea. This is a systematic review. The inclusion criteria were studies published between 2000 and 2018, and structured nurse-led home educational programs for the management of dyspnea due to cancer. The search via PUBMED, COCHRANE, EBSCO, and Google Scholar was worldwide for English-and Greek-language articles. The keywords included "education, program, intervention, patient, dyspnea, breathlessness, cancer, home, nurse." The review was expanded to dyspnea being due to any chronic disease as it gave only one research article for lung cancer. The review identified seven research articles evaluating the effectiveness of various home-based educational programs for dyspnea management due to chronic obstructive pulmonary disease, heart failure, and lung cancer. They showed that a structured home-based educational program is of benefit for the patients by improving their dyspnea levels and their quality of life. There is the need to evaluate the benefits of home-based educational programs for cancer patients with dyspnea at home either as part of a symptom alone support program or as part of the general support given to cancer patients at home.

Publications reporting discrete choice experiments of healthcare interventions rarely discuss whether patient and public involvement (PPI) activities have been conducted. This paper presents examples from the existing literature and a detailed case study from the National Institute for Health Research-funded PATHWAY programme that comprehensively included PPI activities at multiple stages of preference research. Reflecting on these examples, as well as the wider PPI literature, we describe the different stages at which it is possible to effectively incorporate PPI across preference research, including the design, recruitment and dissemination of projects. Benefits of PPI activities include gaining practical insights from a wider perspective, which can positively impact experiment design as well as survey materials. Further benefits included advice around recruitment and reaching a greater audience with dissemination activities, amongst others. There are challenges associated with PPI activities; examples include time, cost and outlining expectations. Overall, although we acknowledge practical difficulties associated with PPI, this work highlights that it is possible for preference researchers to implement PPI across preference research. Further research systematically comparing methods related to PPI in preference research and their associated impact on the methods and results of studies would strengthen the literature.

Publications reporting discrete choice experiments of healthcare interventions rarely discuss whether patient and public involvement (PPI) activities have been conducted. This paper presents examples from the existing literature and a detailed case study from the National Institute for Health Research-funded PATHWAY programme that comprehensively included PPI activities at multiple stages of preference research. Reflecting on these examples, as well as the wider PPI literature, we describe the different stages at which it is possible to effectively incorporate PPI across preference research, including the design, recruitment and dissemination of projects. Benefits of PPI activities include gaining practical insights from a wider perspective, which can positively impact experiment design as well as survey materials. Further benefits included advice around recruitment and reaching a greater audience with dissemination activities, amongst others. There are challenges associated with PPI activities; examples include time, cost and outlining expectations. Overall, although we acknowledge practical difficulties associated with PPI, this work highlights that it is possible for preference researchers to implement PPI across preference research. Further research systematically comparing methods related to PPI in preference research and their associated impact on the methods and results of studies would strengthen the literature.

Background: Ten years on from the National Institute of Health and Clinical Excellence' technology appraisal guideline on haemodialysis in 2002; the clinical community is yet to rise to the challenge of providing home haemodialysis (HHD) to 10-15% of the dialysis cohort. The renal registry report, suggests underutilization of a treatment type that has had a lot of research interest and several publications worldwide on its apparent benefit for both physical and mental health of patients. An understanding of the drivers to introducing and sustaining the modality, from organizational, economic, clinical and patient perspectives is fundamental to realizing the full benefits of the therapy with the potential to provide evidence base for effective care models. Through the BASIC-HHD study, we seek to understand the clinical, patient and carer related psychosocial, economic and organisational determinants of successful uptake and maintenance of home haemodialysis and thereby, engage all major stakeholders in the process. Design and methods: We have adopted an integrated mixed methodology (convergent, parallel design) for this study. The study arms include a. patient; b. organization; c. carer and d. economic evaluation. The three patient study cohorts (n = 500) include pre-dialysis patients (200), hospital haemodialysis (200) and home haemodialysis patients (100) from geographically distinct NHS sites, across the country and with variable prevalence of home haemodialysis. The pre-dialysis patients will also be prospectively followed up for a period of 12 months from study entry to understand their journey to renal replacement therapy and subsequently, before and after studies will be carried out for a select few who do commence dialysis in the study period. The process will entail quantitative methods and ethnographic interviews of all groups in the study. Data collection will involve clinical and biomarkers, psychosocial quantitative assessments and neuropsychometric tests in patients. Organizational attitudes and dialysis unit practices will be studied together with perceptions of healthcare providers on provision of home HD. Economic evaluation of home and hospital haemodialysis practices will also be undertaken and we will apply scenario ("what … if") analysis using system dynamics modeling to investigate the impact of different policy choices and financial models on dialysis technology adoption, care pathways and costs. Less attention is often given to the patient's carers who provide informal support, often of a complex nature to patients afflicted by chronic ailments such as end stage kidney disease. Engaging the carers is fundamental to realizing the full benefits of a complex, home-based intervention and a qualitative study of the carers will be undertaken to elicit their fears, concerns and perception of home HD before and after patient's commencement of the treatment. The data sets will be analysed independently and the findings will be mixed at the stage of interpretation to form a coherent message that will be informing practice in the future.

BACKGROUND: The capacity of medical science to prolong life through the use of technology, mainly in ICUs, raises the question of how far physicians should go in treating the terminally ill patient. OBJECTIVE To verify the attitude of health professionals concerning death, withholding/withdrawal of the futile treatment. DESIGN: Prospective and quantitative cohort study with qualitative interviews. METHODS: A questionnaire was delivered to doctors and nurses. It contained various scenarios depicting end-of-life situations, was answered, and afterwards there was a discussion about the theme. After 30 days, the same questionnaire was answered again. It consists of questions about death and withholding/withdrawal of futile treatment. The answers were given by means of adjectival descriptions and continuous responses. For statistic analysis we used Wilcoxon, Mann Whitney tests being considered significant a p≤0,05, and the multiple correspondence analysis test, as an indicative of ideal qualitative tendency, a total inertia (TI)≥70%. RESULTS: The tendency for the 77 professionals who accomplished this study was to refer: to be in anguish over discussions about Death; to consider important to have routine debates about it. The evaluation of the personal kind discussions concerning to familiar dialogues about the theme, and of the professionals' wishes concerning their own death and the death of their relatives and patients signaled that those people had talked with their relatives after the first stage of the study, and that their attitude concerning Death presented modification (TI=61%). The professional decisions were based on scenario discussions. Firstly, the decision to begin a treatment considered futile was evaluated. The participants tended to change their opinion about this topic (TI=68%) and accept withholding/withdrawing treatment more easily (TI=67%). The discussion about the necessity of respecting patients' wishes led the professionals opt to accomplish the orientations previously expressed by patients (TI=91%). CONCLUSIONS: The health professionals tended to consider that the theme Death should be more debated, feel themselves uncomfortable while talking about the death of their patients, and feel it difficult to be accepted. Information and debates about the theme may lead them to change their conduct.

Atopijski dermatitis (AD) je kronična (dugotrajna) bolest koja zahvaća kožu i odnosi se na grupu bolesti koje pokazuju nasljednu sklonost pojavi alergijske reakcije tipa I. Astma ili alergije vrlo često se mogu pojaviti uz atopijski dermatitis. AD manifestira se suhoćom i crvenilom kože, uz snažan osjećaj svrbeži. Simptomi se razlikuju od osobe do osobe. Najuobičajeniji simptomi su suha koža koja svrbi, kraste iza ušiju i osip na obrazima, rukama i nogama. Kod atopijskog dermatitisa važan čimbenik je koža koja svrbi jer češanje i trljanje pogoršavaju upalu kože karakterističnu za tu bolest. Način na koji atopijski dermatitis utječe na kožu može se razlikovati po raznim oblicima pruritusa i posljedičnim kožnim infekcijama. Neki ljudi imaju crvenu, zagrijanu kožu jer je imunosni sistem kože jako aktiviran. Kod drugih se razvija slijepljena i paperjasta koža kao rezultat neprekidnog češanja i trljanja. Ovo stanje se naziva lihenifikacija. Kod atopijskog dermatitisa javljaju se razdoblj...

The aim of this study was to compare the Parkinson&#39;s Disease Questionnaire-8 (PDQ-8) with three multi-attribute utility (MAU) instruments (EQ-5D-3L, EQ-5D-5L, and 15D) and to develop mapping algorithms that could be used to transform PDQ-8 scores into MAU scores. A cross-sectional study was conducted. A final sample of 228 evaluable patients was included in the analyses. Sociodemographic and clinical data were also collected. Two EQ-5D questionnaires were scored using Spanish tariffs. Two models and three statistical techniques were used to estimate each model in the direct mapping framework for all three MAU instruments, including the most widely used ordinary least squares (OLS), the robust MM-estimator, and the generalized linear model (GLM). For both EQ-5D-3L and EQ-5D-5L, indirect response mapping based on an ordered logit model was also conducted. Three goodness-of-fit tests were employed to compare the models: the mean absolute error (MAE), the root-mean-square error (RMS...

Background  Consumer involvement in guideline development is advocated, but minimal participation, such as a nominated consumer representative on a guideline working group, can inhibit their decision‐making power and contribution. Little is known about how to involve consumers more effectively in guideline development.Objective  To describe a targeted approach for involving consumers actively in guideline development, by focusing on topic and outcome selection, and to discuss the impact on content and structure of the final guideline.Design  Descriptive study.Setting and participants  Patients and carers (n = 24) from a tertiary hospital in Sydney attended three structured peer‐facilitated workshops to complete group‐based exercises on topic and outcome selection for guidelines for early stage chronic kidney disease. These workshops were run in parallel with the guideline‐writing group. For each exercise, participants formed small groups and facilitated their own discussion, recorde...

czekiwania chorych wobec personelu pielęgniarskiego The expectations of patients towards nursing staff STRESZCZENIE Wstęp. Pacjenci oceniający swój pobyt w szpitalu, jako bardzo satysfakcjonujący, tak samo oceniają również opiekę pielęgniarską. Cel. Celem pracy była ocena oczekiwań pacjentów wobec personelu pielęgniarskiego. Materiał i metody. Badaniem objęto po 300 chorych oddziałów zabiegowych (grupa I) i oddziałów zachowawczych (grupa II) i wykorzystano kwestionariusz autorski oraz skale SWLS i AIS. Wyniki. Badani chcieliby, aby pielęgniarki omawiały z nimi ich problemy zdrowotne (64,3%) oraz uczyły chorych właściwego postępowania w chorobie (85,2%), budziły zaufanie (77,7%) i były bezinteresowne (64,3%). W opinii badanych pielęgniarki udzielały chorym informacji (83,0%), szanowały ich godność (90,7%) i prawo do intymności (93,3%). Chorzy z grupy I wykazujący średnią akceptację choroby, najwyżej ocenili pracę pielęgniarek, zwłaszcza w aspekcie zaufania do personelu pielęgniarskiego (59%), a respondenci z grupy II, posiadając niski lub przeciętny stopień zadowolenia z życia, wyżej oceniali ich profesjonalizm pracy. Wnioski. Pacjenci od pielęgniarek oczekiwali przede wszystkim umiejętności obserwacji, odpowiedniej wiedzy medycznej, humanitarnego stosunku do pacjenta oraz staranności w wykonywaniu zabiegów. Najbardziej pożądanymi przez respondentów cechami charakteru pielęgniarek były: zaufanie, bezinteresowność, poszanowanie godności innych i odpowiedzialność. Ankietowani pacjenci w większości pozytywnie oceniali pracę pielęgniarek, przy czym wyżej na oddziałach zabiegowych niż zachowawczych. Na obu oddziałach zaufanie do pielęgniarek najwyżej ocenili pacjenci ze średnią i dobrą akceptacja choroby, a profesjonalizm i zadowolenie z ich pracy pacjenci ze średnim stopniem akceptacji choroby i odczuwający wysoki poziom satysfakcji z życia.

eterminanty radzenia sobie z bólem u pacjentów z chorobą nowotworową Determinants of coping with pain in cancer patients STRESZCZENIE Wstęp. Ból u chorych onkologicznie wynika ze specyfiki choroby nowotworowej. Szacuje się, że blisko 75% chorych z nowotworem odczuwa ból na jednym z etapów choroby. Leczenie bólu jest niezbywalnym prawem pacjenta. Leczenie farmakologiczne skutecznie niweluje ból u 80-90% chorych. Pomocne są strategie radzenia sobie z bólem. Cel. Celem pracy była próba wyłonienia determinantów radzenia sobie z bólem wśród chorych onkologicznie. Materiał i metody. Badaniami objęto 102 pacjentów hospitalizowanych na oddziałach chirurgii onkologicznej, radioterapii i chemioterapii. W pracy wykorzystano autorski kwestionariusz ankiety, Skalę Akceptacji Choroby (AIS), Skalę Uogólnionej Własnej Skuteczności (GSES), Kwestionariusz Radzenia Sobie z Bólem (QCS). Wyniki i wnioski. W badanej grupie pacjenci najczęściej radzą sobie z bólem poprzez modlitwę/pokładanie nadziei, rzadziej poprzez deklarowanie radzenia sobie i odwracanie uwagi. Posiadają średnie wartości akceptacji choroby i poczucia własnej skuteczności. Analiza statystyczna materiału badawczego wykazała zależność między akceptacją choroby a katastrofizowaniem jako sposobem radzenia sobie z bólem oraz między akceptacją choroby a oceną panowania nad odczuwanym bólem i oceną możliwości jego zmniejszenia. Istnieje korelacja pomiędzy wszystkimi sposobami radzenia sobie z bólem i oceną panowania nad bólem oraz możliwością jego zmniejszenia a poczuciem własnej skuteczności. Wyższe poczucie własnej skuteczności daje pacjentom wyższą ocenę panowania nad własnym bólem i wyższą ocenę możliwości zmniejszenia bólu.

Autosomal recessive polycystic kidney disease (ARpKD) is a severe pediatric hepatorenal disorder with pronounced phenotypic variability. A substantial number of patients with early diagnosis reaches adulthood and some patients are not diagnosed until adulthood. Yet, clinical knowledge about adult ARpKD patients is scarce. Here, we describe forty-nine patients with longitudinal follow-up into young adulthood that were identified in the international ARPKD cohort study ARegPKD. Forty-five patients were evaluated in a cross-sectional analysis at a mean age of 21.4 (±3.3) years describing hepatorenal findings. Renal function of native kidneys was within CKD stages 1 to 3 in more than 50% of the patients. Symptoms of hepatic involvement were frequently detected. Fourteen (31%) patients had undergone kidney transplantation and six patients (13%) had undergone liver transplantation or combined liver and kidney transplantation prior to the visit revealing a wide variability of clinical courses. Hepatorenal involvement and preceding complications in other organs were also evaluated in a time-to-event analysis. In summary, we characterize the broad clinical spectrum of young adult ARpKD patients. Importantly, many patients have a stable renal and hepatic situation in young adulthood. ARPKD should also be considered as a differential diagnosis in young adults with fibrocystic hepatorenal disease.

Tens of thousands of cardiac and vascular surgeries (CaVS) are performed on seniors in Canada and the United Kingdom each year to improve survival, relieve disease symptoms, and improve health-related quality of life (HRQL). However, chronic postsurgical pain (CPSP), undetected or delayed detection of hemodynamic compromise, complications, and related poor functional status are major problems for substantial numbers of patients during the recovery process. To tackle this problem, we aim to refine and test the effectiveness of an eHealth-enabled service delivery intervention, TecHnology-Enabled remote monitoring and Self-MAnagemenT-VIsion for patient EmpoWerment following Cardiac and VasculaR surgery (THE SMArTVIEW, CoVeRed), which combines remote monitoring, education, and self-management training to optimize recovery outcomes and experience of seniors undergoing CaVS in Canada and the United Kingdom. Our objectives are to (1) refine SMArTVIEW via high-fidelity user testing and (2) ...

Focusing on maximizing value as an indisputable element has emerged in this century and effective leaders are the most basic and the most extinct resources of each organization. The present study aims at evaluating effective factors on financial management effectiveness by focusing on organic indices in organization in Iranian Knowledge-Based Companies. Prior studies have considered the effect of effective factors in financial management effectiveness sporadically. In this study, while evaluating the Integrated Planning, Budgeting and Monitoring System (IPBMS) principles, and managers' characteristics, mediating role of managers' empowerment in effectiveness of these factors and effectiveness of financial management have been evaluated comprehensively that have innovation in this regard. This study has been conducted in a sample of 148 Knowledge-Based Companies in Iran. The applied research method in this study has been a descriptive method and from correlation-structural equation modeling. Findings of the research indicate that IPBMS and management authorization terms have a positive and significant relationship on effectiveness of financial management and managers' empowerment which the findings of the research indicate IPBMS and managers' characteristics have positive and significant effect on managers' empowerment and financial management effectiveness, the mediator variable has a positive and significant effect on these factors and on financial management effectiveness. According to official statement on not implementing management effectiveness and expressing management challenges based on custodians in this field, better results in the field of management effectiveness of these companies are expected after implementing the applied indices in this study.

While people aspire to more direct participation in decision-making concerning them, individually and collectively, and while the health system is still undergoing intense debate, this doctoral reseach offers a better understanding of chronic patients' empowerment, together individual and collective. Individual empowerment reminds an initiatory journey that changes a vulnerable patient into a resilient person, aware of his weakness, but able to overcome it by acquiring knowledge and adapting his behavior. This individual or psychological empowerment is, according to this thesis, the first level of a much broader process that expands through membership in a group of peer and extends into collaborative dynamic and societal transformations. The multidisciplinary literature review conducted in social sciences clarifies the notion of empowerment and shows that its collective dimensions has long been evaded by marketing. However, the two qualitative exploratory studies confirm the expansive and multilevel nature of empowerment. The first study, based on four experts' interviews, identifies the unmet needs of patients and their communities strategies. It delivers a first model of empowerment process. The following study, a netnography of an online community of patients with thyroid deseases improve the first analysis. The focus on twenty-one of them reveals the individual characteristics that promote patient's commitment and the community resources that increase the group power. Their progression on the forum shows also the existence of an intermediate level, in which a troubled and stressed applicant becomes an altlruistic patient, helping his peers. Finally, a comparison of results between the two studies provides a systemic understanding of the process. The result is a new conceptual and theoretical model of empowerment as a trajectory in four phases, individual, community, collaborative and societal. This research will inspire health actors wishing to revisit democracy based on patients and communities' needs and abilities. This renewal can take several forms, such as the creation of new social listening spaces, new collaborative expertises, or the introduction of participative co-design projects and shared governance mechanisms with trained professionals

While people aspire to more direct participation in decision-making concerning them, individually and collectively, and while the health system is still undergoing intense debate, this doctoral reseach offers a better understanding of chronic patients' empowerment, together individual and collective. Individual empowerment reminds an initiatory journey that changes a vulnerable patient into a resilient person, aware of his weakness, but able to overcome it by acquiring knowledge and adapting his behavior. This individual or psychological empowerment is, according to this thesis, the first level of a much broader process that expands through membership in a group of peer and extends into collaborative dynamic and societal transformations. The multidisciplinary literature review conducted in social sciences clarifies the notion of empowerment and shows that its collective dimensions has long been evaded by marketing. However, the two qualitative exploratory studies confirm the expansive and multilevel nature of empowerment. The first study, based on four experts' interviews, identifies the unmet needs of patients and their communities strategies. It delivers a first model of empowerment process. The following study, a netnography of an online community of patients with thyroid deseases improve the first analysis. The focus on twenty-one of them reveals the individual characteristics that promote patient's commitment and the community resources that increase the group power. Their progression on the forum shows also the existence of an intermediate level, in which a troubled and stressed applicant becomes an altlruistic patient, helping his peers. Finally, a comparison of results between the two studies provides a systemic understanding of the process. The result is a new conceptual and theoretical model of empowerment as a trajectory in four phases, individual, community, collaborative and societal. This research will inspire health actors wishing to revisit democracy based on patients and communities' needs and abilities. This renewal can take several forms, such as the creation of new social listening spaces, new collaborative expertises, or the introduction of participative co-design projects and shared governance mechanisms with trained professionals

Providing a good patient experience is a key part of providing high-quality medical care. This paper explains why patient experience is important in its own right, and its relationship to other domains of quality. We describe methods of measuring patient experience, including issues relating to validity, reliability and response bias. Differences in reported patient experience may sometimes reflect differences in expectations of different population groups and we describe the arguments for and against adjusting patient experience data for population characteristics. As with other quality improvement strategies, feeding back patient experience data on its own is unlikely to improve quality: sustained and multiple interventions are usually required to deliver sustained improvements in care.

When two people are able to relate to each other, they form a mutual bond and respect-rapport. Building a successful rapport is the single most important factor in building a relationship. As the key to successful officepatient relationships, it is important to know that rapport begins to develop right from the very first conversation the doctor has with the patient. In order to ensure that rapport can be established, the doctor needs to be cautious of how patients perceive him/her by judging not only verbal but also nonverbal communication. By demonstrating energy, enthusiasm, respect, empathy, caring, understanding of sensitive intercultural issues from the start, the doctor will be able to begin the rapport-building process that together with communication competence represent key skills of medical practice.

Patient-reported outcome measures (PROMs) provide an important complement to physician-assessed clinical outcome measures in dermatologic diseases such as atopic dermatitis (AD) and chronic hand eczema (CHE). AD and CHE are chronic and relapsing inflammatory skin conditions that often co-occur. While both diseases result in various signs and symptoms that are burdensome and can negatively affect patients' lives, there may be distinct differences in the signs, symptoms, burden, and health-related quality of life (HRQOL) impact of these diseases. The objective of this study was to identify and evaluate PROMs used in studies of AD and CHE. The aim was to explore the assessment of key symptoms and impacts, and identify any gaps in the measures in use. A structured review of the PubMed database was conducted to identify PROMs used or developed for use in AD or CHE. The Dermatology Life Quality Index (DLQI), the Pruritus/Itch Numeric Rating Scale (NRS), the Patient-Oriented Eczema Measure (POEM), and the Quality of Life in Hand Eczema Questionnaire (QOLHEQ) were identified and reviewed in detail. With these measures, the AD and CHE symptoms and impacts most commonly evaluated in the literature include dermatology-related HRQOL in the domains of symptoms and feelings, daily activities, leisure, work and school, personal relationships, and adverse effects; pruritus; sleep disturbance; AD-specific symptoms (dryness, itching, flaking, cracking, bleeding, and weeping/oozing); and CHE-specific symptoms (pain, itch, fissuring, redness, bleeding, and dryness). A review of regulatory labels of drugs approved for AD by the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA) found that, among the four measures reviewed, the Pruritus NRS was included in the FDA and EMA labels for dupilumab, the DLQI was included in the EMA labels for dupilumab and tacrolimus, and the POEM was included in the EMA label for dupilumab. Key symptoms of AD (e.g. itching, flaking, cracking) and CHE (e.g. pain, itching, fissuring) are increasingly being assessed with PROMs; however, primary endpoints in clinical trials are often based on clinician-reported outcome measures. As therapeutic strategies in dermatology are targeted at specific dermatologic symptoms and diseases affecting specific sites (e.g. CHE), future research should explore patients' experiences with these symptoms and sites and the changes with treatment that are most meaningful to them.

Background Patient preferences (PP), which are investigated in PP studies using qualitative or quantitative methods, are a growing area of interest to the following stakeholders involved in the medical product lifecycle: academics, health technology assessment bodies, payers, industry, patients, physicians, and regulators. However, the use of PP in decisions along the medical product lifecycle remains limited. As the adoption of PP heavily relies on these stakeholders, knowledge of their perceptions of PP is critical. Objective This study aimed to characterize stakeholders' attitudes, needs, and concerns with respect to PP in decision making along the medical product lifecycle. Methods Semi-structured interviews (n = 143) were conducted with academics (n = 24), health technology assessment/ payer representatives (n = 24), industry representatives (n = 24), patients, caregivers and patient representatives (n = 24), physicians (n = 24), and regulators (n = 23) from seven European countries and the USA. Interviews were conducted between April and August 2017. The framework method was used to organize the data and identify themes and key findings in each interviewed stakeholder group. Results Interviewees reported being unfamiliar (43%), moderately familiar (42%), or very familiar (15%) with preference methods and studies. Interviewees across stakeholder groups generally supported the idea of using PP in the medical product lifecycle but expressed mixed opinions about the feasibility and impact of using PP in decision making. Interviewees from all stakeholder groups stressed the importance of increasing stakeholders' understanding of the concept of PP and preference methods and ensuring patients' understanding of the questions asked in PP studies. Key concerns and needs in each interviewed stakeholder group were as follows: (1) academics: investigating the validity, reliability, reproducibility, and generalizability of preference methods; (2) health technology assessment/payer representatives: developing quality criteria for evaluating PP studies and gaining insights into how to weigh them in reimbursement/payer decision making; (3) industry representatives: obtaining guidance on PP studies and recognition on the importance of PP from decision makers; (4) patients, caregivers, and patient representatives: providing an incentive and adequate information towards patients when Jorien Veldwijk and Isabelle Huys are joint last author. Disclaimer: This text and its contents reflect the PREFER project's view and not the view of the Innovative Medicines Initiative, the European Union, or the European Federation of Pharmaceutical Industries and Associations.

This study examines the degree of interaction between SOS Alarm, the police, the fire and rescue service and the ambulance service. The study asks the question: How do the emergency organizations interact at the scene of an incident? The four organizations are studied with the help of an interaction model on three levels. This ranges from a lowintensity, sequential and parallel interaction to a high-intensity synchronous interaction. Data were collected during 2007-2008. The study shows that the organizations prefer to remain "on their side" when dealing with an incident. They reduce uncertainty by choosing sequential and parallel forms of interaction. Rhetorically, however, they concur with a synchronous interaction, although this is rarely implemented. Earlier studies has shown a reluctance to interact. However, the level of interaction on the accident scene has not been pinpointed before. The result has practical implications in order to reduce the autonomy of the police, the fire and rescue service and the ambulance service on the accident scene.