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1.
Rheumatol Int ; 44(6): 1133-1142, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38602534

RESUMEN

Patients with axial spondyloarthritis (axSpA) require close monitoring to achieve the goal of sustained disease remission. Telehealth can facilitate continuous care while relieving scarce healthcare resources. In a mixed-methods proof-of-concept study, we investigated a hybrid telehealth care axSpA pathway in patients with stable disease over 6 months. Patients used a medical app to document disease activity (BASDAI and PtGA bi-weekly, flare questionnaire weekly). To enable a remote ASDAS-CRP (TELE-ASDAS-CRP), patients used a capillary self-sampling device at home. Monitoring results were discussed and a decision was reached via shared decision-making whether a pre-planned 3-month on-site appointment (T3) was necessary. Ten patients completed the study, and eight patients also completed additional telephone interviews. Questionnaire adherence was high; BASDAI (82.3%), flares (74.8%) and all patients successfully completed the TELE-ASDAS-CRP for the T3 evaluation. At T3, 9/10 patients were in remission or low disease activity and all patients declined the offer of an optional T3 on-site appointment. Patient acceptance of all study components was high with a net promoter score (NPS) of +50% (mean NPS 8.8 ± 1.5) for self-sampling, +70% (mean NPS 9.0 ± 1.6) for the electronic questionnaires and +90% for the T3 teleconsultation (mean NPS 9.7 ± 0.6). In interviews, patients reported benefits such as a better overview of their condition, ease of use of telehealth tools, greater autonomy, and, most importantly, travel time savings. To our knowledge, this is the first study to investigate a hybrid approach to follow-up axSpA patients including self-sampling. The positive results observed in this scalable proof-of-concept study warrant a larger confirmatory study.


Asunto(s)
Espondiloartritis Axial , Prueba de Estudio Conceptual , Telemedicina , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Estudios Longitudinales , Espondiloartritis Axial/terapia , Espondiloartritis Axial/diagnóstico , Autocuidado/métodos , Encuestas y Cuestionarios , Aplicaciones Móviles
2.
JMIR Ment Health ; 11: e51126, 2024 Feb 05.
Artículo en Inglés | MEDLINE | ID: mdl-38315523

RESUMEN

BACKGROUND: Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes ("open notes"). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Little is known about the expectations and motivations of patients with SMI when reading what their clinicians share via ORA. OBJECTIVE: The aim of this study is to explore the reasons why patients with SMI consider or reject ORA and whether sociodemographic characteristics may influence patient decisions. METHODS: ORA was offered to randomly selected patients at 3 university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Within the framework of a mixed methods evaluation, qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Sociodemographic characteristics of patients were examined using descriptive statistics to identify predictors of acceptance or rejection of ORA. RESULTS: Out of 103 included patients, 58% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment to critically monitoring it and using the accessible data for third-party purposes. Conversely, 42% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as contributing factors. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics. CONCLUSIONS: The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities, and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA. TRIAL REGISTRATION: German Clinical Trial Register DRKS00030188; https://drks.de/search/en/trial/DRKS00030188.


Asunto(s)
Trastornos Mentales , Portales del Paciente , Trastornos Psicóticos , Humanos , Trastornos Mentales/epidemiología , Salud Mental , Pacientes
3.
J Neural Transm (Vienna) ; 131(3): 253-266, 2024 03.
Artículo en Inglés | MEDLINE | ID: mdl-38353811

RESUMEN

Edema as an adverse drug reaction is a commonly underestimated yet potentially debilitating condition. This study analyzes the incidence of severe psychotropic drug-induced edema (e.g., edema affecting the face, legs, or multiple body parts and lasting for more than 1 week, or in any case necessitating subsequent diuretic use) among psychiatric inpatients. The cases under examination are derived from an observational pharmacovigilance program conducted in German-speaking countries ("Arzneimittelsicherheit in der Psychiatrie", AMSP) from 1993 to 2016. Among the 462,661 inpatients monitored, severe edema was reported in 231 cases, resulting in an incidence of 0.05%. Edema occurred more frequently in women (80% of all cases) and older patients (mean age 51.8 years). Pregabalin had the highest incidence of severe edema, affecting 1.46‰ of patients treated with pregabalin, followed by mirtazapine (0.8‰). The majority of edema cases showed a positive response to appropriate countermeasures, such as dose reduction and drug discontinuation, and resolved by the end of the observation period. While most instances of drug-induced edema are reversible, they can have a significant impact on patient well-being and potentially result in decreased treatment adherence. It is, therefore, crucial to remain vigilant regarding risk-increasing circumstances during treatment with psychotropic drugs.


Asunto(s)
Sistemas de Registro de Reacción Adversa a Medicamentos , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Femenino , Humanos , Persona de Mediana Edad , Edema/inducido químicamente , Edema/epidemiología , Edema/tratamiento farmacológico , Pregabalina , Psicotrópicos/efectos adversos , Farmacovigilancia
5.
JMIR Form Res ; 8: e49526, 2024 Feb 20.
Artículo en Inglés | MEDLINE | ID: mdl-38376898

RESUMEN

BACKGROUND: In the coming years, telemedicine will play a key role in health care. Especially in rural areas with weak infrastructure, telemedicine could be crucial to providing adequate and personalized medical care. OBJECTIVE: We investigated the acceptance and preferences of telemedicine among cardiologists, internists, and general practitioners. In addition, we aimed to identify knowledge, explore factors that influence the decision to adopt or reject this technology, and create starting points for demand-oriented further research. METHODS: We conducted a web-based survey between May 2021 and February 2022. The 34-item questionnaire covered a wide range of questions regarding knowledge, acceptance, and use of telemedicine in cardiology care. Participants (cardiologists, internists, and general practitioners) were contacted through their professional email addresses, through a QR code published in a regional health journal, and through X (formerly known as Twitter). After exclusion of questionnaires with missed values, multidimensional scaling and k-means clustering were performed. Participants were divided into 3 clusters (C1, C2, and C3) based on their attitudes toward telecardiology. C1 uses telemedicine for personal health and clinical practice; C2 shows reluctance; C3 uses telemedicine mainly clinically. RESULTS: We contacted 929 physicians. Of those 12.1% (112/929) completed the questionnaires. Participants were 56% male (54/97), 29% female (28/97), and 2% (2/97) diverse (median age 50 years). About 16% (18/112) of the respondents currently use telemedicine daily, 14.3% (16/112) 3-4 times a week, and 43% (48/112) did not use telemedicine at all. Overall, 35.1% (34/97) rated their knowledge of telemedicine as very good or good. Most of the respondents replied that telemedicine could support cardiology care in monitoring of blood pressure and electrocardiograms (57/97, 58.8%, both), consultation (57/97, 58.8%), and extending follow-up time (59/97, 60.8%). Reported barriers to implementation were mostly administration (26/97, 26.8%), inadequate reimbursement (25/97, 25.8%), and the purchase of technology equipment (23/97, 23.7%). Attitudes toward telemedicine in clinical practice were closely related to the number of patients being treated per annual quarter: C3 (median 1350, IQR 1000-1500) versus C1 (median 750, IQR 300-1200) and C2 (median 500, IQR 105-825). The differences between clinical caseloads of C1-C3 members were significant: C1 versus C2 (P=.03), C1 versus C3 (P=.02), and C2 versus C3 (P<.001). Most participants (87/112, 77.7%) would like to expand telemedicine approaches in the future. In the field of cardiology, the participants reported a high suitability of telemedicine. The willingness to train in telemedicine is high to very high for > 50% of the participants. CONCLUSIONS: Our results indicate generally moderate use but positive attitudes toward telemedicine among participating physicians with a higher clinical caseload. The lack of a structural framework seems to be a barrier to the effective implementation of telecardiology.

6.
Nervenarzt ; 95(1): 18-27, 2024 Jan.
Artículo en Alemán | MEDLINE | ID: mdl-38110535

RESUMEN

BACKGROUND: In Germany different offers of social support are available for families that are provided by different sectors, e.g., the youth welfare and the healthcare systems. OBJECTIVE: Documentation of the utilized help, child-related factors that are associated with the utilization and the parental desires for support. MATERIAL AND METHODS: Survey of 160 parents undergoing (partial) inpatient treatment in psychiatric hospitals via an oral interview using standardized and semi-standardized instruments. RESULTS: The results show that nonprofessional help by family and friends as well as support offers provided by the healthcare system are used most frequently. Families that perceived their children as more burdened receive more help than families with children judged as being less burdened. There are regional differences especially in the utilization of high-threshold help by the healthcare system. DISCUSSION: Support offers seem to reach families with mental illnesses, especially those that are particularly burdened; however, there are regional differences regarding the utilization of support as well as the wishes for specific support offers.


Asunto(s)
Hijo de Padres Discapacitados , Trastornos Mentales , Enfermos Mentales , Adolescente , Humanos , Enfermos Mentales/psicología , Padres/psicología , Trastornos Mentales/terapia , Familia , Hijo de Padres Discapacitados/psicología
7.
BMC Psychiatry ; 23(1): 667, 2023 09 13.
Artículo en Inglés | MEDLINE | ID: mdl-37700276

RESUMEN

BACKGROUND: Fatigue is a core symptom of major depressive disorder (MDD) and is frequently refractory to antidepressant treatment, leading to unfavorable clinical/psychosocial outcomes. Dysfunctional self-reported interoception (i.e., maladaptive focus on the body's physiological condition) is prevalent in MDD and could contribute to residual symptom burden of fatigue. Therefore, we explored (a.) cross-sectional correlations between both dimensions and investigated (b.) prospective associations between interoceptive impairments at admission and symptom severity of fatigue at the end of hospitalization. METHODS: This observational, exploratory study included 87 patients suffering from MDD who completed self-rating scales, the Multidimensional Assessment of Interoceptive Awareness, Version 2 (MAIA-2), and the Multidimensional Fatigue Inventory (MFI-20), at the beginning and end of hospitalization. Bivariate correlations (r) and hierarchical regression analyses were performed. RESULTS: The cross-sectional analysis showed moderate to large negative correlations between the MAIA-2 and MFI-20 dimensions except for the Not-Distracting scale. Symptoms of general, physical, and mental fatigue at the end of hospitalization were predicted by reduced body Trusting (ß = -.31, p = .01; ß = -.28, p = .02; ß = -.31, p = .00, respectively). Increased Body Listening (ß = .37, p = .00), Not-Worrying (ß = .26, p = .02), and diminished Attention Regulation (ß = -.32, p = .01) predicted higher mental fatigue. CONCLUSIONS: Diminished body confidence at baseline identified patients at risk for post-treatment fatigue and could therefore serve as a target for improving antidepressant therapy. Body-centered, integrative approaches could address treatment-resistant fatigue in MDD. However, clinicians may also consider the potential adverse effect of increased Body Listening and Not-Worrying on mental fatigue in psychotherapeutic and counselling approaches. Due to the exploratory nature of this study, the results are preliminary and need to be replicated in pre-registered trials with larger sample sizes.


Asunto(s)
Trastorno Depresivo Mayor , Interocepción , Humanos , Trastorno Depresivo Mayor/complicaciones , Autoinforme , Estudios Transversales , Fatiga Mental
8.
Front Psychiatry ; 14: 1166197, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37229387

RESUMEN

Background: Intensive forms of outreach mental health care (IOC) such as crisis resolution or home treatment teams are increasingly implemented as alternatives to inpatient admission, providing recovery-oriented treatment at home at comparable costs and outcomes. However, one issue with IOC is the lack of continuity regarding staff members who provide home visits, complicating relationship building and meaningful therapeutic exchange. The aim of this study is to validate existing primarily qualitative findings using performance data and to explore a possible correlation between the number of staff involved within IOC treatment and the service users' length of stay (LOS). Methods: Routine data from an IOC team in a catchment area in Eastern Germany were analyzed. Basic parameters of service delivery were calculated and an in-depth descriptive analysis regarding staff continuity was performed. Further, an exploratory single case analysis was conducted, presenting the exact sequence of all treatment contacts for one case with low and one with high staff continuity. Results: We analyzed 10.598 face-to-face treatment contacts based on 178 IOC users. The mean LOS was 30.99 days. About 75% of all home visits were conducted by two or more staff members simultaneously. Service users saw an average of 10.24 different staff per treatment episode. On 11% of the care days, only unknown staff, and on 34% of the care days at least one unknown staff member conducted the home visit. 83% of the contacts were performed by the same three staff members and 51% were made by one and the same staff member. A significant positive correlation (p = 0.0007) was found between the number of different practitioners seen by a service user in the first seven days of care and the LOS. Conclusion: Our results suggest that a high number of different staff in the early period of IOC episodes correlates with an extended LOS. Future research must clarify the exact mechanisms of this correlation. Furthermore, it should be investigated how the multiple professions within IOC teams influence the LOS and the quality of treatment and what quality indicators may be suitable to ensure treatment processes.

9.
Brain Sci ; 13(2)2023 Feb 18.
Artículo en Inglés | MEDLINE | ID: mdl-36831896

RESUMEN

Major depressive disorder (MDD) is associated with dysfunctional self-reported interoception (i.e., abnormal perception of the body's physiological state) and systemic inflammation, both of which adversely affect treatment response. In this study, we explored associations between C-reactive protein (CRP) and self-reported interoception, to gain more insight into the pathophysiology of interoceptive impairments in MDD. We also aimed to replicate previous findings on the associations of depression and fatigue severity with CRP. The study included 97 depressed individuals, who completed self-administered questionnaires (Multidimensional Assessment of Interoceptive Awareness (MAIA-2); Beck Depression Inventory-II, Multidimensional Fatigue Inventory). CRP concentrations were analyzed in the serum using a particle-enhanced turbidimetric immunoassay. We applied Bayesian inference to estimate robust effect parameters from posterior distributions based on MCMC sampling, and computed Bayes factors (BF10) as indices of relative evidence. The bivariate analysis supported evidence against associations between CRP and self-reported interoception (BF10 ≤ 0.32), except for one dimension (Not-Distracting: r = 0.11, BF10 > 0.43, absence of evidence). Positive correlations with overall depression (r = 0.21, BF10 = 3.19), physical fatigue (r = 0.28, BF10 = 20.64), and reduced activity (r = 0.22, BF10 = 4.67) were found. The multivariate analysis showed moderate evidence that low-grade inflammation predicted higher scores on the MAIA-2 Not-Worrying scale (ß = 0.28, BF10 = 3.97), after controlling for relevant confounders. Inflammatory responses, as measured by CRP, may not be involved in the pathophysiology of dysfunctional self-reported interoception. However, systemic low-grade inflammation could potentially exert a protective effect against worries about pain or discomfort sensations. An immunological involvement in interoceptive impairments cannot be ruled out until future studies considering additional biomarkers of inflammation replicate our findings.

10.
Z Evid Fortbild Qual Gesundhwes ; 176: 51-60, 2023 Feb.
Artículo en Alemán | MEDLINE | ID: mdl-36754717

RESUMEN

In the context of psychiatric care, user-generated measurement instruments may contribute to quality development and assurance. An explorative construct of experience-related quality components was developed in participative-collaborative cooperation that grasps the users' experiences of psychiatric care. After developing the components using a grounded theory methodology, they were quantified, and their interrelations were investigated using a multidimensional scaling method to explore their internal cohesion. The construct makes it possible to separate structural from interpersonal requirements of the quality components. It further indicated which components are more feasible for the home treatment setting, and which ones for an institutional setting. The components and the construct may be perceived as first steps towards the development of user-generated quality indicators; however, further validation steps are necessary.


Asunto(s)
Servicios de Salud Mental , Garantía de la Calidad de Atención de Salud , Humanos , Alemania , Servicios de Salud Mental/normas , Psiquiatría
11.
Rheumatol Int ; 43(4): 695-703, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36229671

RESUMEN

Patient-reported outcomes (PRO) represent a cornerstone in the management of patients with rheumatoid arthritis (RA). However, PRO are currently recorded mainly on paper and only during on-site appointments. Electronic PRO (ePRO) enable continuous remote monitoring and could improve shared decision-making (SDM) and implementation of a treat-to-target (T2T) approach. This study aims to investigate patient and physician experiences, perceived drawbacks and benefits of using an ePRO web-app (ABATON RA) to digitally support SDM and T2T. A qualitative study embedded in a multicenter randomized controlled trial (RCT) consisting of interviews with RA patients and physicians that were subsequently analyzed using deductive-inductive qualitative content analysis. Between August 2021 and May 2022, interviews with ten RA patients and five physicians were completed. Three key themes emerged in the analysis: (i) App user experiences; (ii) perceived drawbacks of app-supported rheumatology care; and (iii) perceived benefits of app-supported rheumatology care. Continuous ePRO collection and a high level of standardization strained some RA patients. Certain ePRO seemed outdated and were hard to understand. Patients and physicians appreciated having an improved overview of disease activity, capturing disease flares and continuous remote monitoring. Paper- and time-saving were associated with using ePRO. Physicians feared to become too focused on ePRO data, stressed the lack of ePRO monitoring reimbursement and app interoperability. For RA patients and physicians, benefits seemed to outweigh observed drawbacks of the digitally supported SDM using ePRO. The software was easy to use and could lead to a better understanding of the individual disease course, resource allocation and treatment of rheumatoid arthritis.


Asunto(s)
Artritis Reumatoide , Reumatología , Humanos , Investigación Cualitativa , Medición de Resultados Informados por el Paciente , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/tratamiento farmacológico
12.
BMC Health Serv Res ; 22(1): 1470, 2022 Dec 02.
Artículo en Inglés | MEDLINE | ID: mdl-36461025

RESUMEN

BACKGROUND: The goal of the study was to investigate patients' with systemic rheumatic diseases and healthcare professionals' experiences and preferences regarding self-sampling of capillary blood in rheumatology care. METHODS: Patients performed a supervised and consecutive unsupervised capillary blood self-collection using an upper arm based device. Subsequently, patients (n = 15) and their attending health care professionals (n = 5) participated in an explorative, qualitative study using problem-centered, telephone interviews. Interview data were analyzed using structured qualitative content analysis. RESULTS: Interviewed patients reported easy application and high usability. Patients and health care professionals alike reported time and cost savings, increased independence and flexibility, improved monitoring and reduction of risk of infection during Covid-19 as benefits. Reported drawbacks include limited blood volume, limited usability in case of functional restrictions, and environmental concerns. Older, immobile patients with long journeys to traditional blood collection sites and young patients with little time to spare for traditional blood collection appointments could be user groups, likely to benefit from self-sampling services. CONCLUSIONS: At-home blood self-sampling could effectively complement current rheumatology telehealth care. Appropriateness and value of this service needs to be carefully discussed with patients on an individual basis. TRIAL REGISTRATION: WHO International Clinical Trials Registry: DRKS00024925. Registered on 15/04/2021.


Asunto(s)
COVID-19 , Reumatología , Humanos , Investigación Cualitativa , Personal de Salud , Recolección de Muestras de Sangre
13.
BMC Psychiatry ; 22(1): 826, 2022 12 26.
Artículo en Inglés | MEDLINE | ID: mdl-36572855

RESUMEN

BACKGROUND: Internationally, intensive psychiatric home treatment has been increasingly implemented as a community-based alternative to inpatient admission. Since 2018, the so-called Inpatient Equivalent Home Treatment (IEHT; German: "Stationsäquivalente Behandlung", short: "StäB") has been introduced as a particularly intensive form of home treatment that provides at least one daily treatment contact in the service users' (SU) home environment. Prior research shows that this can be challenging in rural catchment areas. Our paper investigates to which extent the location of the SU home location within the catchment area as well as the distance between the home and the clinic influence the utilisation of inpatient treatment compared to IEHT. METHOD: Routine data of one psychiatric hospital in the federal state of Brandenburg in Germany were analysed for the observational period 07/2018-06/2021. Two comparison groups were formed: SU receiving inpatient treatment and SU receiving IEHT. The SU places of residence were respectively anonymised and converted into geo-coordinates. A geographic information system (GIS) was used to visualise the places of residence, and car travel distances as well as travel times to the clinic were determined. Spatial analyses were performed to show the differences between comparison groups. In a more in-depth analysis, the proximity of SU residences to each other was examined as an indicator of possible clustering. RESULTS: During the observational period, the location of 687 inpatient and 140 IEHT unique SU were mapped using the GIS. SU receiving treatment resided predominantly within the catchment area, and this proportion was slightly higher for SU receiving IEHT than for those treated in inpatient setting (95.3% vs. 84.7%). In the catchment area, the geographical distribution of SU place of residence was similar in the two groups. There was a general higher service provision in the more densely populated communities close to Berlin. SU with residence in peripheral communities were mainly treated within the inpatient setting. The mean travel times and distances to the place of residence only differed minimally between the two groups of SU (p > 0.05). The places of residence of SU treated with IEHT were located in greater proximity to each other than those of SU treated in inpatient setting (p < 0.1). CONCLUSION: In especially peripheral parts of the examined catchment area, it may be more difficult to have access to IEHT rather than to inpatient services. The results raise questions regarding health equity and the planning of health care services and have important implications for the further development of intensive home treatment. Telehealth interventions such as blended-care approaches and an increase of flexibility in treatment intensity, e.g. eliminating the daily visit requirement, could ease the implementation of intensive home treatment especially in rural areas.


Asunto(s)
Servicios Comunitarios de Salud Mental , Salud Mental , Humanos , Atención Ambulatoria , Áreas de Influencia de Salud , Alemania , Accesibilidad a los Servicios de Salud
14.
BMC Health Serv Res ; 22(1): 1516, 2022 Dec 13.
Artículo en Inglés | MEDLINE | ID: mdl-36514156

RESUMEN

OBJECTIVE: To explore health care professionals' (HCPs) perspectives, experiences and preferences towards digital technology use in routine palliative care delivery. METHODS: HCPs (n = 19) purposively selected from a sample of settings that reflect routine palliative care delivery (i.e. specialized outpatient palliative care, inpatient palliative care, inpatient hospice care in both rural and urban areas of the German states of Brandenburg and Berlin) participated in an explorative, qualitative study using semi-structured interviews. Interview data were analyzed using structured qualitative content analysis. RESULTS: Digital technologies are widely used in routine palliative care and are well accepted by HCPs. Central functions of digital technologies as experienced in palliative care are coordination of work processes, patient-centered care, and communication. Especially in outpatient care, they facilitate overcoming spatial and temporal distances. HCPs attribute various benefits to digital technologies that contribute to better coordinated, faster, more responsive, and overall more effective palliative care. Simultaneously, participants preferred technology as an enhancement not replacement of care delivery. HCPs fear that digital technologies, if overused, will contribute to dehumanization and thus significantly reduce the quality of palliative care. CONCLUSION: Digital technology is already an essential part of routine palliative care delivery. While generally perceived as useful by HCPs, digital technologies are considered as having limitations and carrying risks. Hence, their use and consequences must be carefully considered, as they should discreetly complement but not replace human interaction in palliative care delivery.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Tecnología Digital , Investigación Cualitativa , Personal de Salud
15.
BMC Health Serv Res ; 22(1): 1297, 2022 Oct 28.
Artículo en Inglés | MEDLINE | ID: mdl-36307779

RESUMEN

OBJECTIVE: A steadily increasing demand and decreasing number of rheumatologists push current rheumatology care to its limits. Long travel times and poor accessibility of rheumatologists present particular challenges for patients. Need-adapted, digitally supported, patient-centered and flexible models of care could contribute to maintaining high-quality patient care. This qualitative study was embedded in a randomized controlled trial (TELERA) investigating a new model of care consisting of the use of a medical app for ePRO (electronic patient-reported outcomes), a self-administered CRP (C-reactive protein) test, and joint self-examination in rheumatoid arthritis (RA) patients. The qualitative study aimed to explore experiences of RA patients and rheumatology staff regarding (1) current care and (2) the new care model. METHODS: The study included qualitative interviews with RA patients (n = 15), a focus group with patient representatives (n = 1), rheumatology nurses (n = 2), ambulatory rheumatologists (n = 2) and hospital-based rheumatologists (n = 3). Data was analyzed by qualitative content analysis. RESULTS: Participants described current follow-up care as burdensome. Patients in remission have to travel long distances. Despite pre-scheduled visits physicians lack questionnaire results and laboratory results to make informed shared decisions during face-to-face visits. Patients reported that using all study components (medical app for ePRO, self-performed CRP test and joint self-examination) was easy and helped them to better assess their disease condition. Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients. Patients wanted to be automatically contacted in case of abnormalities or at least have an app feature to request a call-back or chat. Financial and psychological barriers were identified among rheumatologists preventing them to stop automatically scheduling new appointments for patients in remission. Rheumatology nurses pointed to the potential lack of personal contact, which may limit the holistic care of RA-patients. CONCLUSION: The new care model enables more patient autonomy, allowing patients more control and flexibility at the same time. All components were well accepted and easy to carry out for patients. To ensure success, the model needs to be more responsive and allow seamless integration of education material. TRIAL REGISTRATION: The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).


Asunto(s)
Artritis Reumatoide , Reumatología , Humanos , Pacientes Ambulatorios , Estudios de Seguimiento , Artritis Reumatoide/tratamiento farmacológico , Atención Dirigida al Paciente
16.
Artículo en Inglés | MEDLINE | ID: mdl-35627781

RESUMEN

The working routines in palliative care nursing are associated with a variety of causes of stress with regional and setting-specific differences in Germany. This mixed-methods study aimed to investigate the mental and physical well-being among nurses in German palliative and hospice care and to gain a deeper understanding of procedural and structural aspects that may influence the mental and physical burden in palliative nursing care. The mixed-methods approach combined qualitative interviews, (n = 16) an online survey (n = 101), and subsequent data validation in a focus group (n = 6). Interview and focus group data were analysed using structured qualitative content analysis. Survey data were analysed using descriptive statistics and an explorative quantitative analysis. Moderate to very high levels of stress were reported across all settings, but were highest for nurses in specialized outpatient palliative care settings. Underlying causes of stress related to working conditions in the nursing profession across all palliative care settings were poor working hours, perceived inadequate remuneration, and high demands for documentation. To ensure sustainable high-quality palliative care, adaptations to working conditions that target causes of stress and burden in palliative care nurses are required.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Grupos Focales , Alemania , Humanos , Cuidados Paliativos , Encuestas y Cuestionarios
17.
Stud Health Technol Inform ; 294: 583-584, 2022 May 25.
Artículo en Inglés | MEDLINE | ID: mdl-35612155

RESUMEN

Patient accessible Electronic Health Records (PAEHRs) are increasingly implemented internationally. However, studies carried out in the mental health care setting report several practical and ethical challenges when introducing PAEHRs. In this paper we aim to explore the requirements of a PAEHR system in mental health. As part of a participatory design process, we collected qualitative data from service users and staff in a rural mental health day clinic setting, which can be summarized in the following themes: I) Function and way of the documentation; II) Impact on Treatment; III) Concerns about PAEHRs; IV) time of access to PAEHRs; V) Different views on what to share; VI) Access, Data Privacy and Special Features. Our study uncovered the complexity and special requirements and barriers to the design of PAEHR in mental health. While we are in an early stage of our study, we will continue this iterative process and adapt the PAEHR system to the specific needs of the users and domains.


Asunto(s)
Registros Electrónicos de Salud , Registros de Salud Personal , Documentación , Humanos , Salud Mental , Programas Informáticos
18.
Front Sociol ; 7: 830966, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35633839

RESUMEN

Most research in psychiatry on extremism focuses on the question whether there is a connection between extremism and psychiatric diagnoses. In addition, practitioners are increasingly asked to take part in programs aimed at preventing and countering violent extremism by assessing risk for radicalization. However, an issue that remains largely unaddressed is that the rise of the far right in many countries during the last years poses a challenge for psychiatric services as working with right-wing patients can be a source of conflict for practitioners and patients alike. In this article, we assert that the narrow conceptual scope on psychological vulnerabilities and the practical focus on risk assessment contribute to processes of psychiatrization and limit the scope of research on right-wing extremism in psychiatry. By giving a brief overview of social research into right-wing extremism, the article argues that right wing beliefs should not be conceptualized as an expression of psychological vulnerabilities but rather as attempts to deal with conflict-laden social reality. Thus, a shift of perspective in psychiatric research on extremism is needed. On a conceptional level, the scope needs to be broadened to grasp the interplay of individual and social factors in radicalization with sufficient complexity. On a practical level, it is necessary to further investigate challenges for practitioners and institutions working with right-wing extremist patients.

19.
Z Evid Fortbild Qual Gesundhwes ; 170: 7-13, 2022 May.
Artículo en Alemán | MEDLINE | ID: mdl-35450830

RESUMEN

INTRODUCTION: Accurate health care evaluation using quality indicators (QIs) is of vital clinical importance for a quality-oriented health care system. The QUALIFY tool is the current research standard for assessing QIs of health care; however, its biometric properties in psychiatry have not yet been evaluated empirically. Our aim was to evaluate the internal consistency and structure of QUALIFY. METHODS: This study applies a literature-based post-hoc analytical design to a sample of 289 QIs of mental health care. First, the indicators were assessed on the basis of nineteen ordinal QUALIFY criteria as a single measuring tool. Second, using Cronbach's alpha the internal consistency of the measuring tool was evaluated and the structure of QUALIFY using an explorative principal component analysis was tested. RESULTS AND DISCUSSION: The tool showed an acceptable internal consistency (Cronbach's α=0.75), with three criteria (consideration of potential risks/side effects when using the indicator, implementation barriers taken into account, and the ability to influence the indicator) being inconsistent with the full scale. If these three criteria were not taken into account, the tool had a good internal consistency (Cronbach's α=0.81). The QUALIFY structural matrix comprises three components, one of which reflected six from eight original quality criteria of the scientific category. The other two components represent the semiotic structure of the QIs. CONCLUSION: QUALIFY is an internally inconsistent instrument, which may be useful to assess mental health care QIs. The information about the structure of QUALIFY can be applied for the purposes of research planning as well as the interpretation and development of QIs.


Asunto(s)
Indicadores de Calidad de la Atención de Salud , Calidad de la Atención de Salud , Biometría , Atención a la Salud , Alemania , Humanos
20.
Front Psychiatry ; 13: 781726, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35153874

RESUMEN

BACKGROUND: Research tools to evaluate institutions or interventions in the field of mental health have rarely been constructed by researchers with personal experience of using the mental health system ("experiential expertise"). This paper presents a preliminary tool that has been developed within a participatory-collaborative process evaluation as part of a controlled, multi-center, prospective cohort study (PsychCare) to evaluate psychiatric flexible and integrative treatment, FIT for short, models in Germany. METHOD: The collaborative research team consisting of researchers with and without experiential expertise developed 12 experiential program components of FIT models by an iterative research process based on the Grounded Theory Methodology. These components were transformed into a preliminary research tool that was evaluated by a participatory expert panel, and during a pilot and validation study, the latter using a random sample of 327 users from 14 mental health departments. Internal consistency of the tool was tested using Cronbach's alpha. Construct validity was evaluated using a Principal Components Analysis (PCA) and a Jonckheere Terpstra test in relation to different implementation levels of the FIT model. Concurrent validity was tested against a German version of the Client Satisfaction Questionnaire (ZUF-8) using correlation analysis and a linear regression model. RESULTS: The evaluation of the expert panel reduced 29 initial items to 16 that were further reduced to 11 items during the pilot study, resulting into a research tool (Needs and Experiences in Psychiatric Treatment-NEPT) that demonstrated good internal consistency (Cronbach's alpha of 0.89). PCA yielded a 1-component structure, which accounted for 49% of the total variance supporting the unidimensional structure of the tool. The total NEPT score increased alongside the increasing implementation of the FIT model (p < 0.05). There was evidence (p < 0.001) for convergent validity assessed against the ZUF-8 as criterion measure. CONCLUSIONS: The NEPT tool seems to be promising for further development to assess the experiences with and fulfillment of needs of psychiatric care models from the perspective of users. This paper demonstrates that it is possible to use a participatory-collaborative approach within the methodologically rigorous confines of a prospective, controlled research design.

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