Mental well-being and patient activation during the first eight months of the COVID-19 pandemic in Denmark - a cohort study among 710 Danish adults with chronic conditions.

BACKGROUND: COVID-19 has highlighted the importance of patient activation in managing chronic conditions and promoting resilience during times of crisis. Patient activation refers to an individual's knowledge, skills, and confidence in managing their own health and healthcare. Previous research has shown that people with higher levels of patient activation are better prepared to navigate the challenges of chronic illness and are more likely to engage in healthy behaviors. However, the impact of patient activation on COVID-19-related concerns and mental well-being among people with chronic conditions during the pandemic remains unclear. This study aims to investigate the possible role of patient activation in shaping COVID-19-related concerns and to describe changes in mental well-being among Danish adults with one or more chronic conditions during the early months of the pandemic. METHODS: Danish adults with chronic conditions (e.g. diabetes, coronary heart disease, obstructive pulmonary lung disease, cancer) who had participated in a municipal health education program prior to the COVID-19 outbreak were asked to participate in this prospective questionnaire study in May 2020 and November 2020. Sociodemographic (sex, age, living status, educational attainment, employment status) and disease-related information (diagnosis, one or more chronic conditions) along with the Patient Activation Measure were collected before the outbreak and were obtained from a clinical database used for monitoring and evaluation of municipal health education programs. In contrast, the two questionnaires collected six months apart consisted of single items related to concerns about COVID-19 and the WHO-5 well-being index. RESULTS: A total of 710 people with chronic conditions (mean age 60.9 years; 55.8% female) participated at both time points. In bivariate analyses, patient activation was associated with COVID-19-related concern and well-being. At follow-up, participants experienced a significant decrease in well-being. The decrease was associated with poorer well-being measured six months earlier, a greater perception that it had become more challenging to take care of one's health due to the pandemic, and finally, feeling lonely. The association between patient activation and well-being ceased to be significant in the multivariate regression model. CONCLUSIONS: A considerable proportion of people with chronic conditions participating in this study have been mentally burdened during COVID-19. Although lower levels of patient activation were associated with greater COVID-19-related concerns, it did not have a significant impact on mental well-being over time.

Experiences of being at high-risk during the COVID-19 pandemic and its impact on emotional well-being and daily life in people with chronic conditions: a qualitative study.

BACKGROUND: With its health risks and extensive disruption to everyday life, the SARS-CoV-2 (COVID-19) pandemic has affected the lives of billions of people. People with chronic conditions are particularly susceptible to severe illness if infected by COVID-19, and they have repeatedly been urged to take stringent steps to 'shield' themselves from the virus. It is argued that the negative impact of isolation and other lockdown-related restrictions on emotional well-being and daily life may be most prominent among people at increased risk for severe illness from COVID-19. This qualitative thematic analysis aimed to explore how individuals with chronic conditions perceived the risk posed by COVID-19 and to understand how being at high risk affected their emotional well-being and everyday life. METHODS: The study is a thematic analysis of qualitative data consisting of semi-structured interviews with adults affected by at least one chronic condition supplemented with free text comments from a PRO-based survey. RESULTS: Based on 17 semi-structured interviews and 144 free text comments from a PRO-based survey three thematic patterns representing diverse COVID-19-related risk experiences were extracted: (1) Feeling vulnerable and at risk, (2) Uncertainty about being at risk, and (3) Distancing from the high-risk label. CONCLUSIONS: The risk of COVID-19 impacted the participants' everyday lives and emotional well-being in various ways. Some participants felt vulnerable and at risk causing them and their families to take on far-reaching precautions with significant consequences for their everyday life and emotional well-being. Some participants expressed uncertainty associated with whether they were at increased risk. Such uncertainty gave rise to dilemmas about how to navigate their everyday life. Other participants did not identify themselves as at higher risk and took no special precautions. Such a lack of perceived risk may undermine their motivation for taking preventive measures, which calls for public attention regarding current or future pandemics.

COVID-19 as moral breakdown: Entangled ethical demands experienced by hospital-based nurses in the early onset of the pandemic.

2020 saw the rapid onset of a global pandemic caused by the SARS-CoV-2 virus. For healthcare systems worldwide, the pandemic called upon quick organization ensuring treatment and containment measures for the new virus disease. Nurses were seen as constituting a vital instrumental professional component in this study. Due to the pandemic's unpredictable and potentially dangerous nature, nurses have faced unprecedented risks and challenges. Based on interviews and free text comment from a survey, this study explores how ethical challenges related to "being a nurse" during the COVID-19 pandemic was experienced and understood by Danish hospital-based nurses. Departing from anthropologist Jarett Zigon's notion of moral breakdown, the study demonstrates how the rapid onset of the pandemic constitutes a moral breakdown raising ethical demands for nurses. Analytically we identify three different ethical demands experienced by the nurses. These ethical demands are Nursing and societal ethical demands, Nursing and personal ethical demands, and Nursing and conflicting ethical demands. These demands represent not only very different understandings of ethical demands but also different understandings of ethical acts that are seen as necessary to respond to these demands.

Changes in distress and turnover intentions among hospital-based nurses working during the first 8 months of the COVID-19 pandemic in Denmark: A prospective questionnaire study.

AIM: To describe changes in distress among Danish hospital-based nurses during the early month of the COVID-19 pandemic and to examine predictors of distress and turnover intentions. BACKGROUND: Outbreak of infectious diseases such as the COVID-19 pandemic can increase the likelihood that health professionals suffer from poor mental health even after the outbreak. METHODS: A prospective study among 426 Danish hospital-based nurses during the early month of the pandemic. Participants completed self-administered questionnaires regarding mental health and COVID-19 worries, as well as turnover intentions. RESULTS: Nurses with brief work experience reported higher increase in distress. Feeling unsafe at work, having low trust in management and being anxious for relatives were associated with increased distress. Finally, feeling unsafe at work, being anxious for relatives and having low trust in management were predictors of intention to change job. CONCLUSION: This study suggests that the subjective experiences of uncertainty in work during the COVID-19 pandemic have more impact on nurses' distress than COVID-19 related conditions at hospitals. Finally, the study provides empirical support for the association between COVID-19-related worries and turnover intentions. IMPLICATION FOR NURSING MANAGEMENT: Knowledge of risk factors for psychological distress as well as predictors of turnover intention is necessary and may provide nurses and health-care systems with the ability to respond better against future pandemics and to retain nurses in the organization and in the profession.

Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial.

BACKGROUND: With increased survival among patients with metastatic melanoma and limited time with health care providers, patients are expected to assume a more active role in managing their treatment and care. Activated patients have the knowledge, skills, and confidence to make effective solutions to self-manage health. The use of patient-reported outcomes (PRO) could have the potential to enhance patient activation. However, PRO-based interventions that facilitate an activation in patients with metastatic melanoma are lacking and warranted. MATERIAL AND METHODS: In this prospective non-randomized controlled, clinical trial, patients with metastatic melanoma were assigned to either the intervention (systematic feedback and discussion of PRO during consultation) given at one hospital or the control group (treatment as usual) if they received treatment from two other hospitals in Denmark. The primary outcome was the patient activation measure (PAM), which reflects self-management. Secondary outcomes were health-related quality of life (HRQoL), self-efficacy, and Patient-Physician interaction. Outcomes were measured at baseline, and after 3, 6, and 12 months. The analysis of the effect from baseline to 12 months employed mixed-effects modeling. RESULTS: Between 2017 and 2019, patients were allocated to either the intervention group (n = 137) or the control group (n = 142). We found no significant difference in the course of patient activation between the two groups over time. The course of HRQoL was statistically significantly improved by the intervention compared to the control group. Especially, females in the intervention group performed better than males. The other secondary outcomes were not improved by the intervention. CONCLUSION: The intervention did not improve knowledge, skills, and confidence for self-management for patients with metastatic melanoma. Neither did it improve coping self-efficacy nor perceived efficacy in Patient-Physician interaction. However, the results suggest that the intervention can have a significant impact on HRQoL and in particular social and emotional well-being among the females.

Family involvement and patient-experienced improvement and satisfaction with care: a nationwide cross-sectional study in Danish psychiatric hospitals.

BACKGROUND: Randomised controlled trials suggest that family therapy has a positive effect on the course of depression, schizophrenia and anorexia nervosa. However, it is largely unknown whether a positive link also exists between caregiver involvement and patient outcome in everyday psychiatric hospital care, using information reported directly from patients, i.e. patient-reported experience measures (PREM), and their caregivers. The objective of this study is to examine whether caregiver-reported involvement is associated with PREM regarding patient improvement and overall satisfaction with care. METHODS: Using data from the National Survey of Psychiatric Patient Experiences 2018, we conducted a nationwide cross-sectional study in Danish psychiatric hospitals including patients and their caregivers who had been in contact with the hospital (n = 940 patients, n = 1008 caregivers). A unique patient identifier on the two distinct questionnaires for the patient and their caregiver enabled unambiguous linkage of data. In relation to PREM, five aspects of caregiver involvement were analysed using logistic regression with adjustment for patient age, sex and diagnosis. RESULTS: We consistently find that high caregiver-reported involvement is statistically significantly associated with high patient-reported improvement and overall satisfaction with care with odds ratios (OR) ranging from 1.69 (95% confidence interval (CI) 0.95-2.99) to 4.09 (95% CI 2.48-6.76). This applies to the following aspects of caregiver-reported involvement: support for the patient-caregiver relationship, caregiver information, consideration for caregiver experiences and the involvement of caregivers in decision making. No statistically significant association is observed regarding whether caregivers talk to the staff about their expectations for the hospital contact. CONCLUSION: This nationwide study implies that caregiver involvement focusing on the patient-caregiver relationship is positively associated with patient improvement and overall satisfaction with care in everyday psychiatric hospital care.

The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial.

BACKGROUND: The interest in patient and public involvement (PPI) in health research is increasing. However, the experience and knowledge of PPI throughout the entire research process and especially in the analysis are limited. We explored ways to embrace the perspectives of patients in a research process, and the impact and challenges our collaboration has had on patients, researchers, and the research outcomes. METHODS: This is an explorative single case study of a Danish, clinical, controlled intervention trial and a nested intervention fidelity study included herein. Five patient representatives with metastatic melanoma were part of designing, undertaking and disseminating the trial where the effect of using patient-reported outcome (PRO)-measures as a dialogue tool in the patient-physician consultation was tested. In the fidelity study, audio-recorded consultations were analyzed after training in the Verona Coding Definitions of Emotional Sequences (VR-CoDES). Results were jointly disseminated at an international scientific conference. The outcomes, impact, and challenges were explored through a workshop. RESULTS: In the design phase, we selected PRO-measures and validated the dialogue tool. The information sheet was adjusted according to the patients' suggestions. The analysis of the fidelity study showed that patients and researchers had a high consensus on the coding of emotional cues and concerns. The patients contributed with a new vocabulary and perspective on the dialogue, and they validated the results. PPI caused considerations related to emotional (sadness/sorrow and existential thoughts), administrative (e.g. arranging meetings, balancing work and small talk) and intellectual (e.g. avoiding information harm, continuing activities despite the death of patients) investments. A limitation of the study was the lack of use of a solid evaluation tool to determine the impact of PPI. CONCLUSION: PPI throughout the process and co-creation in the analysis was feasible and beneficial. The case is unique in the degree of workable details, sustainability, and transparency. Moreover, the co-creation provides ideas of ways to operationalize PPI. An evaluation workshop revealed considerations about emotional, administrative and intellectual investments - best described as tacit, yet important 'work'. This knowledge and experience can be applied to other studies where patients are partners in the research. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT03163433, registration date: 8th May 2017.

Proactive health support (PaHS) - telephone-based self-management support for persons at risk of hospital admission: Study protocol for a randomized controlled trial.

BACKGROUND: A small proportion of patients account for most of the healthcare costs. Previous studies of supportive interventions have several methodological limitations and results are mixed. This article describes the protocol for Proactive Health Support: a national randomized controlled trial of telephone-based self-management support (ClinicalTrials.gov, NCT03628469). The main aim of the intervention is to reduce hospital admissions and improve quality of life at six months. METHODS: A sample size of 4400 is needed and individuals with the highest risk of hospital admission in Denmark are invited by electronic communication and telephone to participate in a 1:1 randomized controlled trial. The intervention group receives one face-to-face start-up session followed by telephone sessions about individual goals regarding participants' knowledge, coping and need of healthcare. Quality of life was assessed with the mental health composite score of the SF-36v2 questionnaire. Primary analyses are done using the intention-to-treat principle. DISCUSSION: The trial has been approved by The Regional Committee on Health Research Ethics (SJ-677). Intervention nurses do not assume clinical responsibility for the participants and the intervention is an addition to the general healthcare services. The intervention is complex due to challenging skills and behaviors required by nurses, individual tailoring of the intervention, and interacting intervention components. The study therefore includes process evaluation. The research program comprises: 1. Development initiation, 2. Intervention effect, 3. Cost-effectiveness, 4. Organizational implementation, and 5. Participants' experiences. Inclusion to the trial began April 9th, 2018, was completed July 1st, 2019 and follow-up will be completed February 1st, 2020.

The development of PROmunication: a training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings.

BACKGROUND: The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or training programs for clinicians on how to engage in patient-centred communication based on PROs exist. Lack of training may complicate implementation and systematic use of PROs in the clinic. We aimed to develop a short and feasible manual and training session in PRO-based dialogue rooted in patient-centred communication, coined PROmunication. METHODS: PROmunication was implemented in two studies using PROs in different clinical cancer settings. We interviewed clinicians twice during the development phase. First, adopting a clinical perspective, they provided ideas for content, length and structure of the training session and the manual. Second, they approved the draft of the manual with minor adjustments on how to document clinician-patient communication. The final version of the PROmunication tool was built on clinicians' input, theory on patient-centred communication, a literature review, and didactic considerations. RESULTS: The one-page manual gave clinicians a brief and clear overview of how to prepare for, undergo and document a PRO-based consultation. Illustrations and verbal phrases were offered to operationalize and facilitate patient-centred communication. The training session included elements like evidence-based knowledge about the rationale, benefits and challenges of using PROs and comprised theory, experimental training and instructions for the use of the manual in clinical practice. Ad hoc training and feedback in the clinic followed the training session. CONCLUSIONS: This paper presents the development of a short, theory-driven manual and training session intended to support and engage clinicians in PRO-based dialogue leading to patient-centred communication. Further testing of the tool is necessary and adjustments may be required if the PROmunication tool should be applied in other clinical settings were patients are seen regularly. An evaluation of the tool is planned to be performed in future studies. Training in PROmunication may further systematic and consistent use of PRO data in the consultation, leading to patient-centred consultations and increased patient involvement.

Teaching Cancer Patients the Value of Correct Positioning During Radiotherapy Using Visual Aids and Practical Exercises.

The aim of this study was to investigate if teaching patients about positioning before radiotherapy treatment would (a) reduce the residual rotational set-up errors, (b) reduce the number of repositionings and (c) improve patients' sense of control by increasing self-efficacy and reducing distress. Patients were randomized to either standard care (control group) or standard care and a teaching session combining visual aids and practical exercises (intervention group). Daily images from the treatment sessions were evaluated off-line. Both groups filled in a questionnaire before and at the end of the treatment course on various aspects of cooperation with the staff regarding positioning. Comparisons of residual rotational set-up errors showed an improvement in the intervention group compared to the control group. No significant differences were found in number of repositionings, self-efficacy or distress. Results show that it is possible to teach patients about positioning and thereby improve precision in positioning. Teaching patients about positioning did not seem to affect self-efficacy or distress scores at baseline and at the end of the treatment course.

Cancer-related self-efficacy following a consultation with an oncologist.

OBJECTIVE: When receiving a cancer diagnosis, patients are often faced with psychological distress and loss of control. As a result, their psychological well-being may be influenced by their perceived ability to cope with disease-related and treatment-related challenges. Research indicates that the patient-oncologist relationship may have an impact on patients' self-efficacy. The aim was to examine predictors of self-efficacy following a consultation in an oncology outpatient clinic and the predictors of change. METHODS: A total of 226 patients (mean age: 61 years, 40% male) attending an oncology outpatient clinic completed questionnaires before and after a consultation including the Hospital Anxiety and Depression Scale, two domain-specific self-efficacy scales measuring coping self-efficacy and decision self-efficacy, the Physician-Patient Relationship Inventory, and the Information Satisfaction Questionnaire. RESULTS: While most patients experienced an increase in self-efficacy following the consultation, some patients experienced lower self-efficacy post-consultation. In the multivariate analysis, depressive symptoms emerged as a relatively strong predictor of both coping self-efficacy and decision self-efficacy, whereas marital status was a significant predictor of coping self-efficacy, and satisfaction with information significantly predicted decision self-efficacy. No significant associations were found between self-efficacy and the patients' ratings of the physician-patient relationship. CONCLUSION: Depression seems to be a potential risk factor for lower cancer-related self-efficacy, following an oncologist consultation. By identifying patients who exhibit symptoms of depression, health professionals can increase their attention on empowering these patients. Furthermore, our results suggest that patients' experience of self-efficacy depends on what particular challenges they have to overcome.