GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance cooperation.
Aims During this presentation we will share learning from a Wellcome Trust Engagement Fellowship. We will present examples of artsbased public involvement activities, including a sculpture project with young people and a play about dementia. We aim to raise awareness of what public involvement can gain from the arts; stimulate discussion about the pros and cons of different approaches; and discuss how to encourage more creativity within public involvement. Why is it important and to whom? Public involvement has been criticised for a lack of diversity and inclusivity. By diversifying the involvement activities which we offer, we may attract a wider variety of people. Arts based activities also have the potential to facilitate discussion in an accessible, safe and fun way. This session may be of particular interest to people who are planning or facilitating public involvement activities (members of the public and researchers). What difference has, or could, this project make? Throughout the project, both researchers and members of the public have found arts activities stimulating and useful. However people have encountered some practical challenges when running these projects. Specifically, people do not feel they have the necessary skills to plan and facilitate arts activities. I will discuss how we might address that skills gap and invite the audience to suggest what support is needed. What will people take away from session? An understanding of what arts/health collaborations can offer public involvement Access to resources and contacts to support future projects Acknowledgments This work is funded by the Wellcome Trust
Purpose: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to investigate whether patient reported outcomes (quality of life and patient satisfaction), patients’ coping strategies, sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. Methods: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the Decision-making Participation Self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. Results: The sample included 660 patients, mean age 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.58 (95% CI 0.91 to 2.25)), better quality of life (B 3.60 (95% CI 2.22 to 4.98)) and more patient satisfaction (B 8.02 (95% CI 6.02 to 10.10)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 10.77 (95% CI 5.47 to 16.07)), whereas Italian patients had a lower level ((B -7.38 (95% CI -12.94 to -1.83)) than those in Belgium. Conclusion: Coping style, quality of life and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.
Background Follow-up programs for gynecological cancer patients are currently under revision. There is limited evidence that traditional follow-up and clinical examinations improve survival in an early-stage gynecological setting. Further, traditional follow-up programs fail to accommodate the patient’s need for psychosocial and sexual supportive care and to actively involve patients and their relatives in the follow-up process. Individualized programs may replace traditional routine follow-up with fixed intervals and length. Focusing on alarm-symptoms and self-reporting may ensure detection of recurrence while allowing a continuous attention to the patient’s well-being and return to daily life. In this study, a nurse-led, individualized, and need-based intervention with a specific focus on patient empowerment is tested against a standard physician-led model primarily focusing on the detection of recurrence. Methods The study is designed as a clinical, randomized trial conducted in one of four national onco-gynecological centers in Denmark. Patients with early-stage cervical or endometrial cancer are eligible for inclusion. The intervention group undergoes individualized, nurse-led follow-up supporting patient empowerment including repeated use of electronic patient-reported outcome measures (ePROMs) before each contact as a dialogue support tool. The follow-up contacts are mainly conducted by telephone. All project nurses attended a special training program before project start and are all well-educated and dedicated onco-gynecological nurses. The control group receives standard, physician-led, follow-up without use of ePROMs or specific focus on empowerment. The effect of the intervention is evaluated by questionnaires completed by patients at baseline (3 months after surgery) and 12, 18, and 36 months after surgery. Outcomes include empowerment using the Skill and technique subscale of the HEI-Q questionnaire as the primary outcome while fear of cancer recurrence and health-related quality of life as well as the remaining subscales of the HEI-Q represent secondary outcomes. Data is collected by use of the REDCap technology, which also provides a customized visual support function for the dialogue tool. Discussion This study will provide new information about follow-up in early-stage gynecological cancer settings and thereby contribute to improvement of future follow-up programs. Importantly, the study will provide knowledge about the impact of specific focus on patient empowerment in follow-up programs and, further, how to facilitate empowerment among patients. Trial registration The study is registered at clinicaltrials.gov: ID no. NCT03838861. Registered on 6 February 2019. Protocol version 2, issue date 21 November 2022.
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