Assessing Patient Preferences: Examination of the German Cooper-Norcross Inventory of Preferences.
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ABSTRACT:
SUBMITTER: Heinze PE
PROVIDER: S-EPMC8795584 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivePatient preferences can be informative for health technology assessment (HTA) and payer decision making. However, applications may be different per country. The aim of this study therefore was to investigate HTA representatives' opinions on whether and how to incorporate patient preferences in HTA in their respective countries.MethodsThree country-specific focus groups were conducted with three to seven HTA representatives from Germany, Belgium, and Canada. A predefined focus group guide was used that covered topics relating to how patient preferences can be used in HTA, namely HTA stage, weight, impact, and quality, as well as a case example of gene therapy. Transcripts were analyzed using NVivo 12 following thematic analysis.ResultsAcross all HTA bodies, an interest in the use of patient preferences was observed for scientific advice and value assessments, but not through incorporation in quality-adjusted life-years and multi-criteria decision analysis. HTA representatives found it difficult to determine the weight patient preferences may receive in decision making, but thought it could have an impact on payer decision making if the study is of acceptable quality.ConclusionsIn the near future it may be impossible to achieve structural integration of patient preferences with other evidence in HTA (e.g., in cost-effectiveness analysis), but HTA bodies are willing to incorporate patient preferences in other HTA sections as supportive evidence. To allow for that use, future work should focus on meeting HTA and payer needs when conducting patient preference studies and on education of HTA and payer representatives regarding these studies.
| S-EPMC7794204 | biostudies-literature
Project description:BackgroundFacioscapulohumeral muscular dystrophy (FSHD) is a genetic disorder characterized by progressive muscle weakness leading to permanent disability. There are no curative treatments, however, there are several upcoming clinical trials testing new therapies in FSHD.ObjectiveThis study aimed to explore the disease burden and patient preferences of people with FSHD to ensure that clinical trials can be designed to include outcome measures that are relevant and important to patients.MethodsA survey was developed with a steering committee clinicians and physiotherapists with relevant experience in the disease, patient representatives, a registry expert and industry consultants. Themes of the survey included; participant demographics, disease progression and impact on function, factors encouraging or discouraging clinical trial participation, and positive outcomes of a clinical trial.Results1147 participants responded to the online survey, representing 26 countries across Europe and a range of disease severities. The study highlighted the key symptoms causing concern for FSHD patients - muscle weakness and mobility issues - reflecting what participants want targeted for future therapies. The need for clear information and communication throughout clinical trials was emphasised. Factors most encouraging trial participation included access to new investigational therapies, access to trial results and benefits for the FSHD community. Factors most discouraging trial participation included travel related issues and fear of side effects.ConclusionsThe results from this study identify the patient reported burden of FSHD and should provide researchers and industry with areas of therapeutic research that would be meaningful to patients, as well as supporting the development of patient centric outcome measures in clinical trials.
| S-EPMC10977383 | biostudies-literature
Project description:IntroductionRegardless of the healthcare setting, person-centred care and its implementation in caring for older people are a central issue for those who are responsible as professional caregivers and for those in need of care within the care process. Both aspects encompass the possibility of recognising personal preferences. To provide person-centred care, professional caregivers need to know about the individual preferences of the persons being cared for. Therefore, the PELI (an acronym for 'Preferences for Everyday Living Inventory') instrument was developed at the Polisher Research Institute (USA) for the systematic recording of individual preferences of older people in need of care. There is currently no comparable instrument available in the German language.MethodsAs part of the proposed project PELI-D, all versions of the original PELI instrument (nursing home version) were (1) culture-sensitively translated into German and will be (2) examined in a pilot study for their reliability, feasibility and practicability. For the project PELI-D, we worked together with our practice partners in Germany (Diaconia and Caritas in North Rhine-Westphalia) and collaborated with our partners in the USA who developed the PELI instrument. This study protocol focuses on the pilot study, which will be conducted by the German Center for Neurodegenerative Diseases (DZNE) (site Witten).Ethics and disseminationThis study was approved by the internal quality control committee of the DZNE (ID number: WI029 PELI-D) and by the ethics committee of the German Society of Nursing Science Duisburg branch office (ID number: 18-010). All personal information will be deidentified with a specific identification code and stored in a secured location apart from the rest of the study data. Only qualified and study-related staff will be allowed access to the data. The results of the study will be distributed nationally and internationally through peer-reviewed journals, conferences and journals for nursing care practice.
| S-EPMC6955533 | biostudies-literature
Project description:IntroductionThe ability to utilize the electronic health record (EHR) without compromising the doctor-patient relationship (DPR) is an essential skill of all physicians and trainees, yet little time is spent on educating or assessing learners on needed techniques. To address this gap, we developed a conventional OSCE station coupled with a simulated patient chart within the Epic program in order to assess our students' skills utilizing the EHR during a patient encounter.MethodsOf third-year medical students, 119 were given full access to the patient's simulated chart 24 hours in advance of their OSCE to review clinical data. During an in-person OSCE with a standardized patient (SP), students performed a focused history and physical, using the EHR to verify allergies and medications. Students completed an electronic patient note graded by faculty. SPs evaluated the students on communication and interpersonal skills with specific rubric elements. Faculty graded the students' notes to evaluate their expression of clinical reasoning in the assessment and plan.ResultsTraining SPs and faculty to assess students on EHR skills was feasible. After implementation of a comprehensive curriculum focused on EHR and DPR, there was a significant difference on EHR-related communication skills (M = 76.4, SD = 17.6) versus (M = 37, SD = 28.9) before curriculum enhancement t (117.9) = -12.4, p <.001.DiscussionThe EHR OSCE station provided a standardized method of assessing students' EHR skills during a patient encounter. Challenges still exist in the technological requirements to develop and deliver cases in today's EHR platform.
| S-EPMC7597945 | biostudies-literature
Project description:BackgroundThe Dizziness Handicap Inventory (DHI) is a validated, self-report questionnaire which is widely used as an outcome measure. Previous studies supported the multidimensionality of the DHI, but not the original subscale structure. The objectives of this survey were to explore the dimensions of the Dizziness Handicap Inventory - German version, and to investigate the associations of the retained factors with items assessing functional disability and the Hospital Anxiety and Depression Scale (HADS). Secondly we aimed to explore the retained factors according to the International Classification of Functioning, Disability and Health (ICF).MethodsPatients were recruited from a tertiary centre for vertigo, dizziness or balance disorders. They filled in two questionnaires: (1) The DHI assesses precipitating physical factors associated with dizziness/unsteadiness and functional/emotional consequences of symptoms. (2) The HADS assesses non-somatic symptoms of anxiety and depression. In addition, patients answered the third question of the University of California Los Angeles-Dizziness Questionnaire which covers the impact of dizziness and unsteadiness on everyday activities. Principal component analysis (PCA) was performed to explore the dimensions of the DHI. Associations were estimated by Spearman correlation coefficients.ResultsOne hundred ninety-four patients with dizziness or unsteadiness associated with a vestibular disorder, mean age (standard deviation) of 50.6 (13.6) years, participated. Based on eigenvalues greater one respectively the scree plot we analysed diverse factor solutions. The 3-factor solution seems to be reliable, clinically relevant and can partly be explained with the ICF. It explains 49.2% of the variance. Factor 1 comprises the effect of dizziness and unsteadiness on emotion and participation, factor 2 informs about specific activities or effort provoking dizziness and unsteadiness, and factor 3 focuses on self-perceived walking ability in relation to contextual factors. The first factor correlates moderately with disability and the HADS (values >/=0.6). The second factor is comparable with the original physical subscale of the DHI and factors retained in previous studies.ConclusionsThe results of the present survey can not support the original subscale structure of the DHI. Therefore only the total scale should be used. We discuss a possible restructuring of the DHI.
| S-EPMC2850321 | biostudies-literature
Project description:Mindfulness-based training programs are highly established in competitive and recreational sports. One of the best-known approaches is the Mindfulness-Acceptance-Commitment Approach (MAC) by Gardner and Moore), which integrates mindfulness aspects of awareness, non-judgmental attitude, and focus. Based on these aspects, Thienot and colleagues developed and validated an English language sport-specific questionnaire, the so-called Mindfulness Inventory for Sport (MIS), for the assessment of mindfulness skills in athletes. The aim of this study is to psychometrically test a German language version of the MIS (MIS-D). To assess the psychometric properties, the MIS-D was examined in an online survey with an integrated test-retest design (n = 228) for reliability (internal consistency; test-retest reliability), validity (factorial; convergent), and measurement invariance (gender; competition type). The present results support the psychometric quality of the German language version of the MIS. Necessary replications should among others focus on checking the measurement invariance for further relevant subgroups.
| S-EPMC9174664 | biostudies-literature
Project description:There is a rapidly evolving need for e-health to support chronic disease self-management and connect patients with their healthcare teams. Patients with cirrhosis have a high symptom burden, significant comorbidities, and a range of psychological and cognitive issues. Patients with cirrhosis were assessed for their readiness and interest in e-health. Adults attending one of two outpatient cirrhosis clinics in Alberta were recruited. Eligible participants were not required to own or have experience with digital technologies or the Internet. Medical history, socioeconomic status, and attitudes regarding e-health, the Computer Proficiency Questionnaire, and the Mobile Device Proficiency Questionnaire were used to describe participants' knowledge and skills. Of the 117 recruited patients, 68.4% owned a computer and 84.6% owned a mobile device. Patients had mean proficiency scores of 72.8% (SD 25.9%) and 69.3% (SD 26.4%) for these devices, respectively. In multiple regression analyses, significant predictors of device proficiency were age, education, and household income. Most patients (78.7%) were confident they could participate in videoconferencing after training and most (61.5%) were interested in an online personalized health management program. This diverse group of patients with cirrhosis had technology ownership, proficiency, and online behaviours similar to the general population. Moreover, the patients were very receptive to e-health if training was provided. This promising data is timely given the unique demands of COVID-19 and its influence on self-management and healthcare delivery to a vulnerable population.
| S-EPMC8179692 | biostudies-literature
Project description:PurposePatients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC.MethodsIndividuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data.ResultsParticipants (n = 38) considered information from healthcare providers, likelihood of treatment success, and other patient-specific factors in making their treatment decisions.ConclusionsAlthough patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.
| S-EPMC7644586 | biostudies-literature
Project description:Differentiated service delivery holds great promise for streamlining the delivery of health services for HIV. This study used a discrete choice experiment to assess preferences for differentiated HIV treatment delivery model characteristics among 500 virally suppressed adults on antiretroviral therapy in Harare, Zimbabwe. Treatment model characteristics included location, consultation type, healthcare worker cadre, operation times, visit frequency and duration, and cost. A mixed effects logit model was used for parameter estimates to identify potential preference heterogeneity among participants, and interaction effects were estimated for sex and age as potential sources of divergence in preferences. Results indicated that participants preferred health facility-based services, less frequent visits, individual consultations, shorter waiting times, lower cost and, delivered by respectful and understanding healthcare workers. Some preference heterogeneity was found, particularly for location of service delivery and group vs. individual models; however, this was not fully explained by sex and age characteristics of participants. In urban areas, facility-based models, such as the Fast Track model requiring less frequent clinic visits, are likely to better align with patient preferences than some of the other community-based or group models that have been implemented. As Zimbabwe scales up differentiated treatment models for stable patients, a clear understanding of patient preferences can help in designing services that will ensure optimal utilization and improve the efficiency of service delivery.
| S-EPMC7846512 | biostudies-literature
Project description:BackgroundThe Central Sensitization Inventory (CSI) is a screening tool designed to detect symptoms related to Central Sensitization (CS) and Central Sensitivity Syndromes (CSS) by measuring the degree of related phenomena. The objective of this study was to create a German, culturally-adapted version of the CSI and to test its psychometric properties.MethodsA German version of the CSI (CSI-GE) was developed, culturally-adapted, and pretested for comprehensibility. The psychometric properties of the resulting version were validated in a clinical study with chronic pain and pain-free control subjects. To assess retest reliability, the CSI-GE was administered twice to a subgroup of patients. Structural validity was tested using factor analyses. To investigate construct validity a hypotheses testing approach was used, including (1) correlations between the CSI-GE and several other well-established questionnaires as well as (2) an investigation of the CSI-GE discriminative power between different subgroups of participants believed to have different degrees of CS.ResultsThe CSI-GE showed excellent reliability, including high test-retest characteristics. Factor analyses confirmed a bi-factor dimensionality as has been determined previously. Analysing construct validity 6 out of 11 hypotheses (55%) were met. CSI-GE scores differentiated between subgroups according to expectations. Correlations between CSI-GE scores and other questionnaires suggested that none of the correlated constructs was identical, but there was overlap with other questionnaires based on symptom load. Several correlations did not fit with our current understanding of CS.ConclusionThe CSI-GE appears to be a reliable tool for measuring CS/CSS-related symptomatology. Whether this implies that the CSI-GE measures the degree of CS within an individual subject remains unknown. The resulting score should be interpreted cautiously until further clarification of the construct.
| S-EPMC8375049 | biostudies-literature