Evidence map›Paper›PMID 39067880›Full record

ArticleBMJ open2024

Study protocol of the HessenKohorte2042: a prospective, longitudinal cohort study characterising quality of life in people with Parkinson's disease and their caregivers using a bio-psycho-social approach.

Urs Kleinholdermann, Franziska Thieken, Marina Christine Ruppert-Junck, Marlena van Munster, Anna Julia Pedrosa, Johanne Stümpel, Vincent Hammes, Lars Timmermann, Christiane Woopen, Björn Schmitz-Luhn and 6 more

Abstract read
In one paragraph

Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Urs KleinholdermannPhilipps-Universitat Marburg, Marburg, Germany.
Franziska ThiekenPhilipps-Universitat Marburg, Marburg, Germany.
Marina Christine Ruppert-JunckPhilipps-Universitat Marburg, Marburg, Germany.
Marlena van MunsterPhilipps-Universitat Marburg, Marburg, Germany.
Anna Julia PedrosaPhilipps-Universitat Marburg, Marburg, Germany.
Johanne StümpelPhilipps-Universitat Marburg, Marburg, Germany.
Vincent HammesPhilipps-Universitat Marburg, Marburg, Germany.
Lars TimmermannPhilipps-Universitat Marburg, Marburg, Germany.
Christiane WoopenCenter for Life Ethics, University of Bonn, Bonn, Germany.
Björn Schmitz-LuhnCenter for Life Ethics, University of Bonn, Bonn, Germany.
Anna StormsKatholische Akademie Die Wolfsburg, Diocese of Essen, Mülheim an der Ruhr, Germany.
Heidrun GollaDepartment of Palliative Medicine, University Hospital Cologne, Cologne, Germany.ORCID 0000-0002-4403-630X
Urs M NaterDepartment of Psychology, University of Vienna, Vienna, Austria.
Nadine SkoludaDepartment of Psychology, University of Vienna, Vienna, Austria.
Petra Ina PfefferleComprehensive Biobank Marburg (CBBMR), Philipps-Universität Marburg, Marburg, Germany.
David José PedrosaPhilipps-Universitat Marburg, Marburg, Germany david.pedrosa@staff.uni-marburg.de.ORCID 0000-0002-5403-1959

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionQuality of life (QoL) is of paramount importance as an outcome to monitor and guide therapies for people with Parkinson's disease (PwPD). In particular, due to the heterogeneous symptoms that PwPD may experience during their disease course, QoL can deteriorate not only in patients but also in their caregivers, with a variety of psychosocial consequences. However, there is a lack of longitudinal studies that explore how QoL evolves over time and what factors are significant. Furthermore, holistic approaches that consider bio-psycho-social determinants are rare. In the worst cases, these gaps can lead to suboptimal care and therefore unmet needs for patients and their caregivers, resulting in unnecessary symptom burden and increased healthcare costs for society. METHODS AND ANALYSIS: This prospective, longitudinal study will follow 1000 PwPD along with their caregivers for 20 years, with up to 40 semi-annual assessments. Patient data and sample collection will include clinical assessments, self-reported outcome measures focusing on QoL, biospecimen collection and MRI. Caregiver burden will be systematically assessed through self-administered questionnaires. The use of digitised surveys will allow efficient data collection and convenient assessment at home. Our primary objective is to attain a holistic understanding of QoL in PwPD and establish a tool to measure it. The secondary objective is to explore the psycho-social and biological variables associated with QoL of patients and caregivers over the progression of the disease. This will provide key information for diagnostic and prognostic prediction, therapeutic patient stratification and adaptation of therapy in the future. ETHICS AND DISSEMINATION: The study was approved by the local ethics committee of the University Hospital of Marburg (study number: 209/19). The results will be disseminated by means of publication in peer-reviewed journals, international conference contributions, annual patient meetings and a dedicated website. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00023598).

Indexed as

CaregiversParkinson DiseaseQuality of LifeFemaleGermanyHumansLongitudinal StudiesMaleProspective StudiesResearch DesignSurveys and QuestionnairesParkinson-s diseasePatient-Centered CarePrognosisQuality of Life

Identifiers

PMID39067880
PMCPMC11284865

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.