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Who gets to die at home? Race and disease-related cause of death impacts young adults place of death

Por: Sansom-Daly · U. M. · Mack · J. W.

Commentary on: Gustafson CM, Higgins M, Wood KA, Song MK. Place of death for young adults with chronic illness. Nurs Res. 2023 Jul 11. doi: 10.1097/NNR.0000000000000681. Epub ahead of print.

Implications for practice and research

  • Clinicians must communicate with young adults (YAs) throughout their disease course about end-of-life care preferences, including place-of-death.

  • Future research must explore YAs’ preferences for place-of-death.

  • Context

    Young adults (YAs) with serious illnesses report wanting choices in their end-of-life care.1–3 Where YAs would prefer to die is highly personal, though some studies have reported that many YAs prefer home-based palliative care and death.2 3 Yet, many YAs experience high-intensity, inpatient care at the end of their lives,4 with approximately half of YAs with cancer dying in hospital.4 Factors influencing these patterns of care—and the extent to...

    Implementation and the effects of a Parkinson Network Therapy (PaNTher) on activities of daily living and health-related quality of life in Parkinsons disease patients: study protocol of an mixed-method observational cohort study in outpatient care

    Por: Loidl · V. · Ziegler · K. · Hoppmann · D. · Wagner · C. · Fietzek · U. M. · Ceballos-Baumann · A. O. · Grill · E.
    Introduction

    Parkinson’s disease (PD) represents the fastest growing neurodegenerative disease with an increasing prevalence worldwide. It is characterised by complex motor and non-motor symptoms that lead to considerable disability. Specialised physiotherapy has been shown to benefit patients with PD. The Parkinson Netzwerk Therapie (PaNTher) was created to improve access to specialised physiotherapy tailored to care priorities of PD patients. This study aims to evaluate the effectiveness, acceptability and needs of the PaNTher network by neurologists and physiotherapists involved in the network in outpatient care.

    Methods and analysis

    This is a mixed-method, prospective, pragmatic non-randomised cohort study of parallel groups, with data collection taking place in Bavaria, Germany, between 2020 and 2024. Patients with PD insured by the Allgemeine Ortskrankenkasse Bayern (AOK Bayern) living in Bavaria will be recruited for study participation by network partners. Patients in the intervention group must reside in Munich or the surrounding area to ensure provision of specialised physiotherapy in close proximity to their place of residence. Controls receive care as usual. Six and 12 months after baseline, all patients receive a follow-up questionnaire. Mixed-effect regression models will be used to examine changes in impairment of activities of daily living and quality of life of patients with PD enrolled in the programme over time compared with usual care. Qualitative interviews will investigate the implementation processes and acceptability of the PaNTher network among neurologists and physiotherapists. The study is expected to show that the PaNTher network with an integrative care approach will improve the quality and effectiveness of the management and treatment of patients with PD.

    Ethics and dissemination

    The study has been approved by the ethics committee at the medical faculty of the Ludwig-Maximilians-University Munich (20-318). Results will be published in scientific, peer-reviewed journals and presented at national and international conferences.

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