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1.
Am J Hosp Palliat Care ; 40(6): 644-651, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36129148

ABSTRACT

Context: In the event of accidental trauma, incurable disease and public health emergencies, young adults are unable to participate in their own medical decisions, family members face the huge decision-making pressure and medical resources of the society were unevenly distributed. Objective: The purposes of this study is to investigate the Advanced Care Planning (ACP) acceptance and examine its influencing factors using sequential explanatory mixed methods in order to provide a basis for the formulation of later interventions. Methods: A cross-sectional study of young adults (N = 785) and 12 other young adults from two other communities were investigated from January 2021 to February 2022. Descriptive statistics and multiple linear regressions were conducted. Content analysis was performed on the qualitative data. Results: The primary factors that contributed to the acceptance of ACP were the natural acceptance of death, being female, having a high level of education, having a loved one diagnosed with a chronic disease, and having heard of ACP. Among young adults, the acceptance of ACP may be impeded by a fear of the unknown nature of death, a poor understanding of ACP, and family-led decision-making. Discussion: Our study found that 77.1% had not heard of ACP before participating in the study and showed potential to accept ACP-related interventions. The study highlighted the importance of implementing regular young adult education courses, promoting routine ACP knowledge, individualized education, discussing family member's disease experiences, conducting family meetings, and identifying young adult responsibilities and roles in implement ACP for young adults in China.


Subject(s)
Advance Care Planning , Humans , Young Adult , Female , Male , Cross-Sectional Studies , Chronic Disease , Family , China
2.
Qual Life Res ; 29(11): 3009-3015, 2020 Nov.
Article in English | MEDLINE | ID: mdl-32564293

ABSTRACT

PURPOSE: Adverse events (AEs) assessment by clinicians is a standard practice in a clinical setting. However, studies have found clinicians tend to report fewer AEs, especially subjective AEs. We aimed to explore the difference of subjective AEs assessment between clinicians and patients based on PRO-CTCAE, and to discuss the necessity of incorporating patient into the evaluation of AEs. METHODS: Between April and July 2019, two different questionnaires with the same subjective AEs were given to patients and clinicians in the Day Chemotherapy ward of Breast Center in the Fourth Hospital of HeBei Medical University. Patients completed a Simplified Chinese version of PRO-CTCAE, including six common subjective AEs of chemotherapy: nausea, vomiting, diarrhea, fatigue, pain, and constipation. Clinicians completed the common terminology criteria for adverse events (CTCAE) with the same AEs. General information of enrolled patients and results from the questionnaires were collected and analyzed. RESULTS: 384 paired questionnaires were collected. Clinicians reported less subjective AEs than patients, and the general agreement between patients and clinicians was poor. When considering the grade difference, we utilize weighted kappa coefficient to analysis, and agreement between patients and clinicians was poor (k < 0.4) regardless of the frequency, the severity and interfering with daily life of AEs, and the most discrepancies were within one point. Patients tended to grade severer than the clinician. CONCLUSIONS: The results of this study showed that there were differences between clinicians and patients in subjective adverse events evaluation. Patient reporting of symptoms can be used as a supplementary method to incorporate the current approach to monitor subjective AEs, to improve the timeliness and accuracy of clinical evaluation of subjective AEs.


Subject(s)
Drug-Related Side Effects and Adverse Reactions/diagnosis , Patient Reported Outcome Measures , Adult , Aged , Female , Humans , Male , Middle Aged , Quality of Life , Surveys and Questionnaires , Young Adult
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