Background Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands a better understanding of the impact of PDOC on patients, their families and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals. Methods Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients’ family members and healthcare professionals involved in PDOC care. Families’ and healthcare professionals’ views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups. Discussion To our knowledge, this is the first nationwide study exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.
Objectives: Coping strategies may play an important role as facilitator or barrier for functional recovery after hip fracture. This study explored 1] active and passive coping strategies in hip fracture patients within inpatient geriatric rehabilitation (GR) 2] the association of these coping strategies with depression, anxiety, pain and health-related quality of life (HRQoL) Method: Secondary data analysis (FIT-HIP trial). Participants were patients with hip fracture, aged 65þ years, admitted to post-acute GR units. Coping was assessed using the 'Active Tackling' and 'Passive Reacting' subscale of Utrecht Coping List (UCL). Depression, anxiety, pain and HRQoL was assessed using GDS-8, HADS-A, NPRS and EQ5D-VAS. Based on UCL norm tables-for both subscales-we dichotomized the group into (extremely) high use of this coping strategy i.e. 'predominantly active coping' (PAC), and 'predominantly passive coping' (PPC); versus their corresponding 'residual groups', i.e. the remaining participants. Results: 72 participants were included. Participants mostly used active coping (PAC: 33.3%), however those engaging in passive coping (23.6%) had significantly more depression and anxiety symptoms (GDS-8 ! 3: 31.1% respectively 9.1%, p ¼ 0.040; HADS-A ! 7: 58.8% vs 10.9%; p ¼ 0.00). Conclusion: Active tackling and passive reacting coping strategies are used by up to one-third of patients with recent hip fracture. Passive coping was associated with more symptoms of depression and anxiety, which in turn may influence rehabilitation negatively. Screening of (passive) coping strategies could contribute to prompt identification of hip fracture patients at risk for negative health outcomes.
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