The Economic Impact on Australian Patients with Neuroendocrine Tumours
ConclusionsMedical expenses are substantial for some patients with NETs. Quality of life is adversely affected for patients experiencing financial toxicity and avoiding early retirement is an important issue for supportive care services. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 19, 2020 Category: International Medicine & Public Health Source Type: research

Finding Out What Matters in Decision-Making Related to Genomics and Personalized Medicine in Pediatric Oncology: Developing Attributes to Include in a Discrete Choice Experiment
ConclusionsThis study identified eight candidate attributes that will be further validated prior to developing a DCE aimed at better understanding factors influencing decision-making related to genomic sequencing and personalized medicine. This study and the proposed DCE will contribute to improving ethical and clinical practices in the application of novel genomic technology in pediatric oncology. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 10, 2020 Category: International Medicine & Public Health Source Type: research

Population Preferences for Treatments When Critically Ill: A Discrete Choice Experiment
ConclusionsRespondents valued their independence as the most important factor in deciding whether to receive ongoing medical treatments in the intensive care unit. When clinicians are unable to obtain specific patient information, they should consider framing their decision making around the likelihood of the patient achieving functional independence rather than survival. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 3, 2020 Category: International Medicine & Public Health Source Type: research

A Qualitative Research for Defining Meaningful Attributes for the Treatment of Inflammatory Bowel Disease from the Patient Perspective
ConclusionsThrough the identification of the ten most relevant attributes that influence patient decision making for IBD treatments, we developed a descriptive framework that should be considered by physicians when discussing IBD treatment options with their patients. The results of our qualitative research may also be helpful for the development of future IBD clinical studies and quantitative research. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - January 30, 2020 Category: International Medicine & Public Health Source Type: research

Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness
ConclusionsHaving established this initial validity evidence, further testing to assess internal consistency, test –retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - January 22, 2020 Category: International Medicine & Public Health Source Type: research

Development and Psychometric Evaluation of the Life Interference Questionnaire for Growth Hormone Deficiency (LIQ-GHD) to Assess Growth Hormone Injection Burden in Children and Adults
ConclusionsThe LIQ-GHD is a new COA for the measurement of r-hGH injection treatment burden. This research provides evidence supporting its content validity, hypothesized factor structure, score reliability, and construct validity in pediatric and adult populations. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - January 20, 2020 Category: International Medicine & Public Health Source Type: research

Use of Patient Preference Studies in HTA Decision Making: A NICE Perspective
AbstractPatient preference studies could provide valuable insights to a National Institute for Health and Care Excellence committee into the preferences patients have for different treatment options, especially if the study sample is representative of the broader patient population. We identify three main uses of patient preference studies along a technology ’s pathway from drug development to clinical use: in early clinical development to guide the selection of appropriate endpoints, to inform benefit-risk assessments carried out by regulators and to inform reimbursement decisions made by health technology assessmen...
Source: The Patient - Patient-Centered Outcomes Research - January 16, 2020 Category: International Medicine & Public Health Source Type: research

Empirical Investigation of Ranking vs Best –Worst Scaling Generated Preferences for Attributes of Quality of Life: One and the Same or Differentiable?
The objective of this study was to investigate the degree of inconsistency in quality-of-life attribute preference orderings generated via successive best –worst scaling (a form of ranking whereby the respondent chooses the best and worst attributes from a choice set, these attributes are then eliminated and the best and worst attributes from the reduced choice set are then chosen and this process is continued until all presented attributes are elim inated) and conventional ranking methods (whereby the respondent chooses the best, second best and third best from a choice set until all presented attributes are elimina...
Source: The Patient - Patient-Centered Outcomes Research - January 13, 2020 Category: International Medicine & Public Health Source Type: research

Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold
ConclusionsThis in-depth qualitative study has supported identification of relevant symptom concepts and the development and refinement of patient-reported outcome items to assess those concepts. The findings support the content validity of the items and suggest that they can be used with confidence in children aged 9  years and older. For children aged 6–8 years, it is recommended the items are administered with initial adult supervision to explain the more difficult concepts or through parent/interviewer administration. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - December 20, 2019 Category: International Medicine & Public Health Source Type: research

Reporting Formative Qualitative Research to Support the Development of Quantitative Preference Study Protocols and Corresponding Survey Instruments: Guidelines for Authors and Reviewers
ConclusionsPublishing formative qualitative research is a necessary step toward strengthening the foundation of any quantitative study, enhancing the relevance of its preference evidence. The guidelines should aid researchers, reviewers, and regulatory agencies and promote transparency within HPR more broadly. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - December 16, 2019 Category: International Medicine & Public Health Source Type: research

A Hierarchical Bayes Approach to Modeling Heterogeneity in Discrete Choice Experiments: An Application to Public Preferences for Prenatal Screening
ConclusionOur findings are consistent with previous studies based on affected-population preferences. This concordance should be reassuring from a policy perspective and can inform the design of publicly funded prenatal screening programs. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - December 9, 2019 Category: International Medicine & Public Health Source Type: research

Tapering Biologic Therapy for Rheumatoid Arthritis: A Qualitative Study of Patient Perspectives
ConclusionsThis study provides novel insight into the perspectives of patients with rheumatoid arthritis on tapering biologics when sustained remission is achieved at a crucial juncture in global affordability for healthcare systems. These patient perspectives can inform the planning of decision aids and clinical trials of decision-making processes when tapering is proposed. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - December 5, 2019 Category: International Medicine & Public Health Source Type: research

The Patient Perspective: A Matter of Minutes
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 29, 2019 Category: International Medicine & Public Health Source Type: research

Patient Preferences in the Medical Product Lifecycle
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 29, 2019 Category: International Medicine & Public Health Source Type: research

Using Animation to Self-Report Health: A Randomized Experiment with Children
ConclusionChildren in all three age groups preferred animation on a tablet to other methods of assessment. Our results highlight the potential for using an animated preference-based measure to assess the health of children as young as 4  years. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 19, 2019 Category: International Medicine & Public Health Source Type: research

11th meeting of the international academy of health preference research
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 15, 2019 Category: International Medicine & Public Health Source Type: research

Advancing the Use of Patient Preference Information as Scientific Evidence in Medical Product Evaluation: A Summary Report of the Patient Preference Workshop
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 7, 2019 Category: International Medicine & Public Health Source Type: research

“Lower abdominal pains, as if I was being squeezed…in a clamp”: A Qualitative Analysis of Symptoms, Patient-Perceived Side Effects and Impacts of Ovarian Cancer
ConclusionsIn our qualitative study, the most common and most bothersome experiences reported by women treated for ovarian cancer were symptoms of bloating, abdominal pain and tiredness; side effects of hair loss, nausea and tiredness/fatigue; and impacts relating to concerns about the future, physical functioning and work limitations. We suggest that clinicians measure these experiences consistently and take them into consideration when making treatment decisions. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 6, 2019 Category: International Medicine & Public Health Source Type: research

Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study
ConclusionsWith the number of treatment options set to increase, it is important for healthcare providers to be aware of how patient experiences shape patients ’ decisions about new therapies. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 6, 2019 Category: International Medicine & Public Health Source Type: research

Acknowledgement to Referees
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 31, 2019 Category: International Medicine & Public Health Source Type: research

Impact of Elagolix on Workplace and Household Productivity Among Women with Moderate to Severe Pain Associated with Endometriosis: A Pooled Analysis of Two Phase III Trials
AbstractBackgroundEndometriosis profoundly impairs women ’s workplace and household productivity.ObjectiveThe aim of this study was to evaluate the impact of elagolix on endometriosis-related workplace and household productivity losses.MethodsData were pooled from two phase III trials of women aged 18 –49 years with moderate to severe endometriosis-associated pain treated for 6 months with elagolix 150 mg daily (QD), 200 mg twice daily (BID), or placebo. The Health-Related Productivity Questionnaire was administered at baseline, Month 3, and Month 6 to determine workplace and household abse ...
Source: The Patient - Patient-Centered Outcomes Research - October 25, 2019 Category: International Medicine & Public Health Source Type: research

Involving People with Learning Disabilities in Guideline Development
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2019 Category: International Medicine & Public Health Source Type: research

A Picture is Worth a Thousand Words: The Role of Survey Training Materials in Stated-Preference Studies
ConclusionsUsing animated training materials did not change the preferences of respondents, but they appeared to improve choice consistency, potentially allowing researchers to include more complex designs with increased numbers of attributes, levels, alternatives or choice sets. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - September 30, 2019 Category: International Medicine & Public Health Source Type: research

Assessing the Patient Experience of Hypoparathyroidism Symptoms: Development of the Hypoparathyroidism Patient Experience Scale-Symptom (HPES-Symptom)
ConclusionsThe findings provided evidence of content validity for the HPES-Symptom in US adults with hypoparathyroidism. Additional research is needed to validate the measure in patients with hypoparathyroidism to assess its psychometric properties. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - September 25, 2019 Category: International Medicine & Public Health Source Type: research

Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development
AbstractPatients and caregivers are increasingly recognized as key stakeholders in developing clinical practice guidelines (CPGs). Online engagement approaches offer the promise of a rigorous, scalable, and convenient engagement method. This paper illustrates how an online modified-Delphi approach could be used to engage patients, caregivers, and other stakeholder in CPG development. It provides practical guidance for conducting online modified-Delphi panels that covers (1) joint development of the engagement approach with relevant stakeholders, (2) adaptation of methods used by experts in guideline development, (3) pilot ...
Source: The Patient - Patient-Centered Outcomes Research - September 23, 2019 Category: International Medicine & Public Health Source Type: research

The Shared Decision-Making Process in the Pharmacological Management of Depression
AbstractShared decision making (SDM) is a model of interaction between doctors and patients in which both actors contribute to the medical decision-making process. There is an international consensus across medicine about the importance of SDM interventions, which have raised great interest in mental healthcare over the last decade. Yet SDM is not widely adopted, particularly in the field of psychiatry. The purpose of the present article is to examine, from a patient and physician perspective, the importance of SDM in the management of healthcare with a focus on mental health; it reviews the enablers and barriers (and how ...
Source: The Patient - Patient-Centered Outcomes Research - September 23, 2019 Category: International Medicine & Public Health Source Type: research

COPD-Specific Self-Management Support Provided by Trained Educators in Everyday Practice is Associated with Improved Quality of Life, Health-Directed Behaviors, and Skill and Technique Acquisition: A Convergent Embedded Mixed-Methods Study
ConclusionsFollowing a 7-h, lecture-based continuing education activity on COPD-specific self-management support, respiratory educators with significant experience of care provided self-management support that included provision of information, inhalation technique training, and smoking cessation advice. This resulted in enhanced patient quality of life, health-directed behaviors, and skill and technique acquisition. To decrease health resource utilization, the training could employ active learning methods. More time and resources could also be devoted to implementing regular follow-up visits.Clinical Trials Registration N...
Source: The Patient - Patient-Centered Outcomes Research - September 10, 2019 Category: International Medicine & Public Health Source Type: research

Motivational Interviewing as a Strategy to Impact Outcomes in Heart Failure Patients: A Systematic Review
Conclusions and Implications of Key FindingsMI demonstrated a positive effect on the SCB hospital readmission prevention factor and on QoL. MI delivered with greater frequency and over a longer duration may improve the immediate risk of hospital readmission as well as long-term outcomes through better medication adherence and SCBs. However, heterogeneity in the methods, design, intervention type, and structure challenged comparisons across studies and further research is warranted. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - September 10, 2019 Category: International Medicine & Public Health Source Type: research

Opening the ‘Black Box’: An Overview of Methods to Investigate the Decision-Making Process in Choice-Based Surveys
AbstractThe desire to understand the preferences of patients, healthcare professionals and the public continues to grow. Health valuation studies, often in the form of discrete choice experiments, a choice based survey approach, proliferate as a result. A variety of methods of pre-choice process analysis have been developed to investigatehow andwhy people make their decisions in such experiments and surveys. These techniques have been developed to investigate how people acquire and process information and make choices. These techniques offer the potential to test and improve theories of choice and/or associated empirical m...
Source: The Patient - Patient-Centered Outcomes Research - September 5, 2019 Category: International Medicine & Public Health Source Type: research

Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers
This study analyzed combined findings from a targeted literature review with patient-reported information shared on YouTube to further understand patient perspectives in hematologic cancers and, in particular, acute myeloid leukemia. The targeted literature review included articles concerning patient (aged ≥ 18 years) experiences or perspectives in acute myeloid leukemia or other hematologic cancers. YouTube video selection criteria included patients (aged ≥ 60 years) with self-reported acute myeloid leukemia. In total, 26 articles (13 acute myeloid leukemia–specific and 14 other hematolog...
Source: The Patient - Patient-Centered Outcomes Research - August 28, 2019 Category: International Medicine & Public Health Source Type: research

Patient Decision Aid (PDA) for Patients with Rheumatoid Arthritis Reduces Decisional Conflict and Improves Readiness for Treatment Decision Making
AbstractObjectivesThe aim of this study was to develop and assess the effectiveness of a patient decision aid (PDA) to support treatment decision making in Spanish patients with moderate-to-severe rheumatoid arthritis (RA) who fail to achieve the therapeutic goal with the current disease-modifying antirheumatic treatment strategy.MethodsThe PDA was developed in accordance with the International Patient Decision Aids Standards recommendations. A steering group led the project. Three literature reviews and two focus groups were performed to develop the PDA prototype. To check its comprehensibility, acceptability, and feasibi...
Source: The Patient - Patient-Centered Outcomes Research - August 14, 2019 Category: International Medicine & Public Health Source Type: research

African Americans Want a Focus on Shared Decision-Making in Asthma Adherence Interventions
ConclusionsParticipants desired SDM and offered reasons for ICS non-adherence that could be used to inform an SDM intervention for clinical application. Strategies informed by the recipients of care and delivered by providers during routine office visits offer a scalable approach to narrowing asthma disparities experienced by AA adults.Trial RegistrationClinicalTrials.gov identifier NCT03036267. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - August 14, 2019 Category: International Medicine & Public Health Source Type: research

Effect of Treatment Preference in Randomized Controlled Trials: Systematic Review of the Literature and Meta-Analysis
ConclusionsMatching patients to preferred interventions has previously been shown to promote outcomes such as satisfaction and treatment adherence. Our analysis of current evidence showed that allowing patients to choose their preferred treatment resulted in better clinical outcomes in mental health and pain than giving them a treatment that is not preferred. These results underline the importance of incorporating patient preference when making treatment decisions. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - August 2, 2019 Category: International Medicine & Public Health Source Type: research

Does Device or Connection Type Affect Health Preferences in Online Surveys?
AbstractBackground and ObjectiveRecent evidence has shown that online surveys can reliably collect preference data, which markedly decrease the cost of health preference studies and expand their representativeness. As the use of mobile technology continues to grow, we wanted to examine its potential impact on health preferences.MethodsTwo recently completed discrete choice experiments using members of the US general population (n  =  15,292) included information on respondent device (cell phone, tablet, Mac, PC) and internet connection (business, cellular, college, government, residential). In this analysis, ...
Source: The Patient - Patient-Centered Outcomes Research - July 31, 2019 Category: International Medicine & Public Health Source Type: research

Patient Experience with Congenital (Hereditary) Thrombotic Thrombocytopenic Purpura: A Conceptual Framework of Symptoms and Impacts
ConclusionsThe final conceptual model, which includes salient symptoms and impacts of congenital thrombotic thrombocytopenic purpura and reflects the disease burden, was derived by integrating inputs from the literature review, expert opinion, and patient interviews, and will be used to develop a congenital thrombotic thrombocytopenic purpura –specific, patient-reported outcome instrument. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 30, 2019 Category: International Medicine & Public Health Source Type: research

What Matters Most for Treatment Decisions in Hepatitis C: Effectiveness, Costs, and Altruism
ConclusionsIn addition to treatment effectiveness, patient experiences with financial problems, quality of life, and altruistic desires impact HCV patients ’ decisions. The risk of infecting others may motivate patients to seek treatment as much as personally experienced physical symptoms. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 26, 2019 Category: International Medicine & Public Health Source Type: research

Behavioral Economic Insights to Improve Medication Adherence in Adults with Chronic Conditions: A Scoping Review
ConclusionsBehavioral economic informed interventions show promise in terms of improving medication adherence. However, there is no single simple intervention. This review highlighted the importance of targeting non-adherent patients, understanding their reasons for non-adherence, providing reminders and feedback to patients and physicians, and measuring clinical outcomes in addition to medication adherence. Further research in settings that differ from the US health system is needed. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 23, 2019 Category: International Medicine & Public Health Source Type: research

Patient Preferences for Breast Cancer Treatment Interventions: A Systematic Review of Discrete Choice Experiments
ConclusionDespite the relative lack of evidence in this specific context, our review shows that breast cancer patients naturally value greater benefit and, in scenarios of advanced and metastatic disease, are willing to face risks of some side effects for gains in survival. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 18, 2019 Category: International Medicine & Public Health Source Type: research

A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR)
ConclusionA patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 17, 2019 Category: International Medicine & Public Health Source Type: research

Exploring the Impact of Infusion Frequency in Hemophilia A: Exit Interviews with Patients Participating in BAY 94-9027 Extension Studies (PROTECT VIII)
ConclusionsThis study provides rich insights into the experiences of patients with EHL products and the value of reduced infusion frequency. Such data could be of value to a range of stakeholders (e.g. regulators, payers) and facilitate patient –clinician discussions to promote tailored treatment decisions. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 16, 2019 Category: International Medicine & Public Health Source Type: research

Preferences for Use and Design of Electronic Patient-Reported Outcomes in Patients with Chronic Obstructive Pulmonary Disease
ConclusionsInvestigators should consider including these preferences when designing ePRO assessments. Incorporating patient preferences for ePRO design can ultimately help reduce patient burden and increase engagement, compliance, and improve data quality. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 16, 2019 Category: International Medicine & Public Health Source Type: research

Analysis of Clinical Trial Exit Interview Data in Patients with Treatment-Resistant Depression
ConclusionsStandardized interview data provided direct patient insight into the treatment experience from the patient perspective. Data from these interviews assisted in phase III endpoint selection by providing data on relevant concepts in the target treatment-resistant depression population receiving a new treatment, thus enabling the selection of tools to capture noted treatment effects and, by eliminating irrelevant constructs or measures, thereby reducing data “noise.”Trial RegistrationClinicalTrials.gov NCT01640080; NCT01627782. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 4, 2019 Category: International Medicine & Public Health Source Type: research

Patient-Reported Outcome Measures in Atopic Dermatitis and Chronic Hand Eczema in Adults
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 im pacts, 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 e...
Source: The Patient - Patient-Centered Outcomes Research - July 4, 2019 Category: International Medicine & Public Health Source Type: research

Support Tools for Preference-Sensitive Decisions in Healthcare: Where Are We? Where Do We Go? How Do We Get There?
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 29, 2019 Category: International Medicine & Public Health Source Type: research

Patient Preferences in the Medical Product Life Cycle: What do Stakeholders Think? Semi-Structured Qualitative Interviews in Europe and the USA
ConclusionsDespite the interest all interviewed stakeholder groups reported in PP, the effective use of PP in decision making across the medical product lifecycle is currently hampered by a lack of standardization and consensus on how to both measure and use PP. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 21, 2019 Category: International Medicine & Public Health Source Type: research

10th Meeting “International Academy of Health Preference Research” Basel, Switzerland, 13–14 July, 2019
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 18, 2019 Category: International Medicine & Public Health Source Type: research

Humanization of Care: Key Elements Identified by Patients, Caregivers, and Healthcare Providers. A Systematic Review
ConclusionOur systematic review and synthesis contributes to a deeper understanding of the concept of humanization of care. The proposed key elements are expected to serve as preliminary guidance for healthcare institutions aiming to overcome challenges in various forms and achieve humanized and efficient care. Future studies need to fully examine specific practices of humanized care and test quantitatively their effectiveness by examining psychosocial and health outcomes. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 15, 2019 Category: International Medicine & Public Health Source Type: research

Do Non-participants at Screening have a Different Threshold for an Acceptable Benefit –Harm Ratio than Participants? Results of a Discrete Choice Experiment
ConclusionsThis study shows that non-participants have different preferences than participants at screening as they express relatively more concern about overtreatment and have higher requirements for a high-tech screening programme. Non-participants also report to be more uncertain about their participation decision and more often seek additional information to the standard information provided in the invitation letter. Further studies on informational needs and effective communication strategies are warranted to ensure that non-participation is a fully informed choice. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 5, 2019 Category: International Medicine & Public Health Source Type: research

Towards Meaningful Engagement for the Patient Voice
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 5, 2019 Category: International Medicine & Public Health Source Type: research

Systematic Review of Public Preferences for the Allocation of Donor Organs for Transplantation: Principles of Distributive Justice
ConclusionsThe general public not only wanted to allocate organs mainly to those with a good probability of having a successful transplantation but also wanted to consider those who need an organ most urgently to prevent fatal consequences, resulting in unclear trade-offs between effectiveness/benefit and medical urgency. Public preferences for organ allocation are therefore complex, and data regarding clear trade-offs are still lacking. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - April 8, 2019 Category: International Medicine & Public Health Source Type: research