| 1. |
- Cenci, M. Angela, et al.
(författare)
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Dyskinesia matters
- 2020
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Ingår i: Movement Disorders. - : Wiley. - 0885-3185 .- 1531-8257. ; 35:3, s. 392-396
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Tidskriftsartikel (refereegranskat)abstract
- Levodopa-induced dyskinesia (LID) represents a significant source of discomfort for people with Parkinson's disease (PD). It negatively affects quality of life, it is associated with both motor and nonmotor fluctuations, and it brings an increased risk of disability, balance problems, and falls. Although the prevalence of severe LID appears to be lower than in previous eras (likely owing to a more conservative use of oral levodopa), we have not yet found a way to prevent the development of this complication. Advanced surgical therapies, such as deep brain stimulation, ameliorate LID, but only a minority of PD patients qualify for these interventions. Although some have argued that PD patients would rather be ON with dyskinesia than OFF, the deeper truth is that patients would very much prefer to be ON without dyskinesia. As researchers and clinicians, we should aspire to make that goal a reality. To this end, translational research on LID is to be encouraged and persistently pursued.
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| 2. |
- Dahlberg, Marie, et al.
(författare)
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Objectives and outcomes of patient-driven innovations published in peer-reviewed journals : a qualitative analysis of publications included in a scoping review
- 2023
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 13:6
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Forskningsöversikt (refereegranskat)abstract
- Objectives: The aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported.Methods: We performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008-2020.Results: In total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration.Conclusions: The patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients' and informal caregivers' daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.
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| 3. |
- Dahlberg, Marie, et al.
(författare)
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Why publish? : An interview study exploring patient innovators’ reasons for and experiences of scientific publishing
- 2024
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Ingår i: Research Involvement and Engagement. - : BioMed Central (BMC). - 2056-7529. ; 10:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Scientific publications featuring patient-driven innovations (i.e., innovations that are developed and driven by patients or informal caregivers) are increasing. By understanding patient innovators' experiences of research publication, the scientific community may be better prepared to support or partner with patient innovators. Thus, the aim of this study was to explore patient innovators' reasons for and experiences of authoring scientific publications about their innovations.Methods: Qualitative semi-structured interviews were conducted with 15 international patient innovators from three continents who had published in scientific journals. Participants were identified through a scoping review on patient-driven innovations and snowball sampling. Interviews were conducted from June to October 2022 and the data was analyzed using the Framework Method.Findings: Participants' reasons for publishing in scientific journals were to strengthen the roles and voices of patients and informal caregivers, and to get recognition for their innovations. Some published as a response to serendipitous opportunities. Several positive experiences were reported: collaborations defined by transparency, mutual respect, and meaningful participation; learning and competence development; and gained confidence regarding the value of lived experiences in research. Participants also reported negative experiences, such as cultural barriers manifested as conservatism in academia and power imbalances between participants and researchers, and structural barriers regarding academic affiliations and research funding.Conclusions: Despite progress in increasing patient and public involvement in research and publication, our study found that patient innovators still experience barriers. This suggests that continued efforts are needed to facilitate contributions from patient innovators and other public actors to the production of relevant and meaningful research.
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| 4. |
- Dorsey, E. Ray, et al.
(författare)
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Deep Phenotyping of Parkinson's Disease
- 2020
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Ingår i: Journal of Parkinson's Disease. - : IOS Press. - 1877-7171 .- 1877-718X. ; 10:3, s. 855-873
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Forskningsöversikt (refereegranskat)abstract
- Phenotype is the set of observable traits of an organism or condition. While advances in genetics, imaging, and molecular biology have improved our understanding of the underlying biology of Parkinson's disease (PD), clinical pheno-typing of PD still relies primarily on history and physical examination. These subjective, episodic, categorical assessments are valuable for diagnosis and care but have left gaps in our understanding of the PD phenotype. Sensors can provide objective, continuous, real-world data about the PD clinical phenotype, increase our knowledge of its pathology, enhance evaluation of therapies, and ultimately, improve patient care. In this paper, we explore the concept of deep phenotyping-the comprehensive assessment of a condition using multiple clinical, biological, genetic, imaging, and sensor-based tools-for PD. We discuss the rationale for, outline current approaches to, identify benefits and limitations of, and consider future directions for deep clinical phenotyping.
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| 5. |
- Fernholm, Rita, et al.
(författare)
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Patients' and clinicians' views on the appropriate use of safety-netting advice in consultations : an interview study from Sweden
- 2023
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 13:10
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Tidskriftsartikel (refereegranskat)abstract
- Background A promising approach to manage clinical uncertainty and thereby reduce the risk of preventable diagnostic harm is to use safety-netting advice (ie, communicating structured information to patients about when and where to reconsult healthcare).Aim To explore clinicians’ and patients’ views on when and how safety-netting can be successfully applied in primary-care and emergency-care settings.Design and setting An exploratory qualitative research design; we performed focus groups and interviews in a Swedish setting.Participants Nine physicians working in primary or emergency care and eight patients or caregivers participated. The participants were an ethnically homogeneous group, originating from Western European or Australian backgrounds.Method Data were analysed inductively, using the framework method. The results are reported according to the Standards for Reporting Qualitative Research guidelines for reporting qualitative research.Results In order to manage diagnostic uncertainty using safety-netting, clinicians and patients emphasised the need to understand the preconditions for the consultation (ie, the healthcare setting, the patient’s capacity and existing power imbalance). Furthermore, participants raised the importance of establishing a mutual understanding regarding the patient’s perspective and the severity of the situation before engaging in safety-netting advice.Conclusion The establishment of a shared mental model between clinician and patient of the preconditions for the clinical encounter is a vital factor affecting how safety-netting advice is communicated and received and its ability to support patients in problem detection and planning after the visit. We suggest that successful safety-netting can be viewed as a team activity, where the clinician and patient collaborate in monitoring how the patient’s condition progresses after the care visit. Furthermore, our findings suggest that to be successfully implemented, safety-netting advice needs to be tailored to the clinical context in general and to the patient–clinician encounter in particular.
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| 6. |
- Filograna, Roberta, et al.
(författare)
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PARKIN is not required to sustain OXPHOS function in adult mammalian tissues
- 2024
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Ingår i: npj Parkinson's Disease. - 2373-8057. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Loss-of-function variants in the PRKN gene encoding the ubiquitin E3 ligase PARKIN cause autosomal recessive early-onset Parkinson's disease (PD). Extensive in vitro and in vivo studies have reported that PARKIN is involved in multiple pathways of mitochondrial quality control, including mitochondrial degradation and biogenesis. However, these findings are surrounded by substantial controversy due to conflicting experimental data. In addition, the existing PARKIN-deficient mouse models have failed to faithfully recapitulate PD phenotypes. Therefore, we have investigated the mitochondrial role of PARKIN during ageing and in response to stress by employing a series of conditional Parkin knockout mice. We report that PARKIN loss does not affect oxidative phosphorylation (OXPHOS) capacity and mitochondrial DNA (mtDNA) levels in the brain, heart, and skeletal muscle of aged mice. We also demonstrate that PARKIN deficiency does not exacerbate the brain defects and the pro-inflammatory phenotype observed in mice carrying high levels of mtDNA mutations. To rule out compensatory mechanisms activated during embryonic development of Parkin-deficient mice, we generated a mouse model where loss of PARKIN was induced in adult dopaminergic (DA) neurons. Surprisingly, also these mice did not show motor impairment or neurodegeneration, and no major transcriptional changes were found in isolated midbrain DA neurons. Finally, we report a patient with compound heterozygous PRKN pathogenic variants that lacks PARKIN and has developed PD. The PARKIN deficiency did not impair OXPHOS activities or induce mitochondrial pathology in skeletal muscle from the patient. Altogether, our results argue that PARKIN is dispensable for OXPHOS function in adult mammalian tissues.
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| 7. |
- Filograna, Roberta, et al.
(författare)
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PARKIN is not required to sustain OXPHOS function in adult mammalian tissues
- 2024
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Ingår i: npj Parkinson's Disease. - : Springer Nature. - 2373-8057. ; 10:1
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Tidskriftsartikel (refereegranskat)abstract
- Loss-of-function variants in the PRKN gene encoding the ubiquitin E3 ligase PARKIN cause autosomal recessive early-onset Parkinson’s disease (PD). Extensive in vitro and in vivo studies have reported that PARKIN is involved in multiple pathways of mitochondrial quality control, including mitochondrial degradation and biogenesis. However, these findings are surrounded by substantial controversy due to conflicting experimental data. In addition, the existing PARKIN-deficient mouse models have failed to faithfully recapitulate PD phenotypes. Therefore, we have investigated the mitochondrial role of PARKIN during ageing and in response to stress by employing a series of conditional Parkin knockout mice. We report that PARKIN loss does not affect oxidative phosphorylation (OXPHOS) capacity and mitochondrial DNA (mtDNA) levels in the brain, heart, and skeletal muscle of aged mice. We also demonstrate that PARKIN deficiency does not exacerbate the brain defects and the pro-inflammatory phenotype observed in mice carrying high levels of mtDNA mutations. To rule out compensatory mechanisms activated during embryonic development of Parkin-deficient mice, we generated a mouse model where loss of PARKIN was induced in adult dopaminergic (DA) neurons. Surprisingly, also these mice did not show motor impairment or neurodegeneration, and no major transcriptional changes were found in isolated midbrain DA neurons. Finally, we report a patient with compound heterozygous PRKN pathogenic variants that lacks PARKIN and has developed PD. The PARKIN deficiency did not impair OXPHOS activities or induce mitochondrial pathology in skeletal muscle from the patient. Altogether, our results argue that PARKIN is dispensable for OXPHOS function in adult mammalian tissues.
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| 8. |
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| 9. |
- Hägglund, Maria, et al.
(författare)
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NORDeHEALTH – Learning from the Nordic Experiences of Patient Online Record Access
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871.
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The Nordic countries are forerunners in online record access (ORA) which has now become widespread. The importance of accessible and structured health data has also been highlighted by policymakers internationally. To ensure the full realization of ORA’spotential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, technical, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, and introduce a Nordic-led research project that carries out the first of its kind, large-scale international investigation of patients’ ORA; NORDeHEALTH. We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records (EHRs). This will have implications within Europe and globally as it will further extend the boundaries for accessing and using EHRs for primary and secondary data use. Research such as that led by the NORDeHEALTH project is essential in guiding the design and implementation of solutions to meet the requirements of the EHDS proposal. Further international collaboration and research are needed to ensure that socio-technical and contextual factors are considered to ensure successful and secure implementation.
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| 10. |
- Hägglund, Maria, Lektor, 1975-, et al.
(författare)
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The NORDeHEALTH 2022 Patient Survey : Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey.
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