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.

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.

Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study.

PURPOSE: We examined the association between sociodemographic, personal, and disease-related determinants and referral to a new model of health care that uses patient-reported outcomes (PRO) measures for remote outpatient follow-up (PRO-based follow-up). METHODS: We conducted a prospective cohort study among outpatients with epilepsy at the Department of Neurology at Aarhus University Hospital, Denmark. Included were all persons aged ≥ 15 years visiting the department for the first time during the period from May 2016 to May 2018. Patients received a questionnaire containing questions about health literacy, self-efficacy, patient activation, well-being, and general health. We also collected data regarding sociodemographic status, labour market affiliation, and co-morbidity from nationwide registers. Associations were analysed as time-to-event using the pseudo-value approach. Missing data were handled using multiple imputations. RESULTS: A total of 802 eligible patients were included in the register-based analyses and 411 patients (51%) responded to the questionnaire. The results based on data from registers indicated that patients were less likely to be referred to PRO-based follow-up if they lived alone, had low education or household income, received temporary or permanent social benefits, or if they had a psychiatric diagnosis. The results based on data from the questionnaire indicated that patients were less likely to be referred to PRO-based follow-up if they reported low levels of health literacy, self-efficacy, patient activation, well-being, or general health. CONCLUSION: Both self-reported and register-based analyses indicated that socioeconomically advantaged patients were referred more often to PRO-based follow-up than socioeconomically disadvantaged patients.

Exploring organisational mechanisms in PRO-based follow-up in routine outpatient care - an interpretive description of the clinician perspective.

BACKGROUND: Patient-reported outcome (PRO)-based follow-up is a new model of service delivery, where PRO measures are used as the very basis for demand-driven outpatient follow-up in patients with chronic diseases. Adopting the clinicians' perspective, we aimed to explore what happens when PRO-based follow-up is implemented in routine clinical practice. We also aimed to identify organisational mechanisms related to PRO-based follow-up. METHODS: The methodological approach of this interview study is interpretive description, informed by a perspective of critical realism. Semi-structured interviews were conducted with 13 clinicians (eight nurses and five physicians) working with PRO-based follow-up in outpatient care for epilepsy in the Central Denmark Region. RESULTS: PRO-based follow-up gave rise to ambivalence in clinicians. Seen from the clinicians' perspective, PRO-based follow-up could both increase and decrease the quality of follow-up. Moreover, PRO-based follow-up both enhanced and impaired clinicians' work experiences. Additionally, the clinicians used strategies to ease some of the perceived disadvantages. The clinicians did extra tasks and worked around the scope of PRO-based follow-up. Thus, clinicians constituted a professional buffer as they deflected some of the negative mechanisms associated with PRO-based follow-up. CONCLUSIONS: As a model of a service delivery, PRO-based follow-up is highly dependent on the clinicians' day-to-day management of the system, and mechanisms related to routine use of PRO measures in outpatient follow-up are complex. Paying attention to the organisational settings is critical for PRO-based follow-up to improve quality of care and enhance patient-centred care.

Effect of patient-initiated versus fixed-interval telePRO-based outpatient follow-up: study protocol for a pragmatic randomised controlled study.

BACKGROUND: The traditional system of routine outpatient follow-up of chronic disease in secondary care may involve a waste of resources if patients are well. The use of patient-reported outcomes (PRO) could support more flexible, cost-saving follow-up activities. AmbuFlex is a PRO system used in outpatient follow-up in the Central Denmark Region. PRO questionnaires are sent to patients at fixed intervals. The clinicians use the PRO data to decide whether a patient needs a visit or not (standard telePRO). PRO may make patients become more involved in their own care pathway, which may improve their self-management. Better self-management may also be achieved by letting patients initiate contact. The aim of this study is to obtain data on the effects of patient-initiated follow-up (open access telePRO) on resource utilisation, quality of care, and the patient perspective. METHODS: The study is a pragmatic, randomised, controlled trial in outpatients with epilepsy. Participants are randomly assigned to one of two follow-up activities: a) standard telePRO or b) open access telePRO. Inclusion criteria are age ≥ 15 years and previous referral to standard telePRO follow-up at Aarhus University Hospital, Denmark. Furthermore, patients must have answered the last questionnaire via the Internet. The number of contacts will be used as the primary outcome measure. Secondary outcome measures include well-being (WHO-5 Well-Being Index), general health, number of seizures, treatment side effects, mortality, health literacy (Health Literacy Questionnaire), self-efficacy (General Self-Efficacy scale), patient activation, confidence, safety, and satisfaction. In addition, the patient perspective will be explored by qualitative methods. Data will be collected at baseline and 18 month after randomisation. Inclusion of patients in the study started in January 2016. Statistical analysis will be performed on an intention-to-treat and per-protocol basis. For qualitative data, the interpretive description strategy will be used. DISCUSSION: The benefits and possible drawbacks of the PRO-based open access approach will be evaluated. The present study will provide important knowledge to guide future telePRO interventions in relation to effect on resource utilisation, quality of care, and the patient perspective. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02673580 (Registration date January 28, 2016).

Transition of care in a Danish context: translation, cross-cultural adaptation and content validation of CTM-15 and PACT-M.

BACKGROUND: Transition of care from hospitalisation to home is a complex process with potential patient safety risks, especially for patients with multimorbidity. Traditionally, the quality of transition of care has been evaluated primarily through readmission rates. However, interpreting the readmission rates presents challenges, and readmission rates fail to capture the patient's perspective on the quality of the care transition. Insight into the patient's experience with their care or a health service can be provided through the use of patient-reported experience measures (PREMs), and the two PREMs Care Transitions Measure 15 (CTM-15) and Partners at Care Transitions Measure part 1 and 2 (PACT-M1 and PACT-M2) assess on the quality of transition of care from the patients' perspective. The aim of this study was to translate, culturally adapt, and assess content validity of CTM-15, PACT-M1, and PACT-M2 for Danish-speaking patients with multimorbidity. METHODS: A two-step approach was used for content validation, involving cognitive debriefing and interviews with patients, representing the target group, as well as quantitative data collection from healthcare professionals representing all three sectors of the Danish healthcare system. The patients were systematically interviewed regarding the aspects of content validity; comprehensibility, relevance, and comprehensiveness. The healthcare professionals assessed the relevance and comprehensiveness of each item through questionnaires, allowing the calculation of a content validity index (CVI). An item CVI ≥ 0.78 is considered good. RESULTS: The results of the qualitative data indicated that both CTM-15 and the PACT-M questionnaires were considered relevant, and comprehensible, and comprehensive to the target group. The CVI computed at item level determined that PACT-M1 and PACT-M2 demonstrated excellent content validity among the healthcare professionals, whereas the CVI for two items of the CTM-15 fell below the threshold value for "good". CONCLUSION: The Danish versions of the PACT-M questionnaires demonstrated good content validity, and the CTM-15 demonstrated acceptable content validity based on qualitative data from patients and quantitative data from healthcare professionals. Further validation of the questionnaires, by assessing their construct validity and reliability is recommended.

In this study, we aimed to translate two questionnaires, CTM-15 and PACT-M, that address patients' perspectives on the quality of transition of care, into Danish. Furthermore, we assessed their content validity i.e., their relevance, comprehensibility, and comprehensiveness. The study is important because we need to include the patients' experiences in the overall evaluation of transition of care from hospital admission to home. This is possible through validated questionnaires. In order to investigate the content validity, it is important to include representatives of the target group, in this study patients with multimorbidity, as well as professional experts in the area. We interviewed patients about their perception of the relevance, comprehensibility, and comprehensiveness of the questionnaires. Additionally, we asked healthcare professionals about the relevance and comprehensiveness of the questionnaires. PACT-M demonstrated good content validity according to both patients and healthcare professionals. CTM-15 showed good content validity among patients, however, two items were not considered relevant by healthcare professionals. To ensure the usability of the questionnaires, further investigation into their construct validity, reliability, and responsiveness is necessary. Upon completion of the validation process, the questionnaires will be valuable tools in research projects aiming to improve the transition of care, as well as in quality monitoring and improvement initiatives.

Supporting Families with Breast Cancer: Insights from the Danish Nurse-Led Program "The Children's Tour" for Families with Parental Cancer.

PURPOSE: This study explores how a Danish nurse-led program designed to provide support to families where mothers are affected by breast cancer is experienced by the women attending the program and the nurses organizing it. Their experiences provide insights into the program's impact and potential areas of improvement and inform future interventions targeting the well-being of this specific population. DATA SOURCES: The study involved data collected through qualitative research. An observational study of the intervention was conducted to inform the development of an interview guide for semistructured individual interviews and a focus group interview. Five women with breast cancer and children aged 5 to 16 years were interviewed, and four nurses involved in the nurse-led program took part in the focus group interview. Data were audio recorded, transcribed verbatim, and thematically analyzed. CONCLUSION: Families participating in the nurse-led program reported it helpful in many ways. Three themes emerged from the analysis of the interviews: 1) "How to talk about parental cancer with school-aged children," 2) "Setting up the room," and 3) "Exchanging imagination for reality." Getting familiar with the treatment room and nurses, playing with hospital gear (syringes, bandages, and the treatment chair), and watching a movie together indicate that the visit to the ward is important and cannot be entirely replaced by digital solutions. With the need for support and limited resources at the hospital, it is pivotal to identify the families most in need. IMPLICATIONS FOR NURSING PRACTICE: Women with breast cancer parenting adolescent children need family-based care based at the hospital. Further research is needed to refine the program to cover the concerns of the whole family, including fathers and grandparents, and to apply the program to other families with parental cancer of other types.

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.

Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives.

BACKGROUND: Patient-reported outcomes (PROs) are increasingly used in outpatient follow-up. PRO-based remote follow-up offers a new healthcare delivery model, where PROs are used as the basis for outpatient follow-up in patients with chronic kidney disease. However, the patient's perspective of this novel remote care delivery remains unknown. OBJECTIVES: This study aimed to explore the patients' experiences using PROs in remote care and how this mode of follow-up may enhance patient engagement. DESIGN: A qualitative approach was employed, guided by Focused Ethnography and Interpretive Description. PARTICIPANTS: Purposively, 15 patients with chronic kidney disease experienced with PRO-based remote follow-up in 3 renal outpatient clinics in the Central Denmark Region, were recruited. MEASURES: Field studies comprising participant observation in remote PRO consultations and individual, semi-structured interviews with the patients constituted the empirical data. Thematic analysis was performed according to Braun and Clarke's six-phase process. RESULTS: PRO-based remote follow-up may enhance patient engagement by a) improving communication, b) increasing disease knowledge, c) inducing flexibility, d) ensuring clinician feedback on PRO data, and e) prompting clinical action. Barriers to enhanced patient engagement were identified as a) lack of feedback on PRO data, b) lower disease knowledge, c) PRO in competition with biomedical data, and d) loss of personal relation. CONCLUSION: PRO-based follow-up in remote care holds several advantages for the patients. However, some barriers need clinical awareness before PROs may enhance the patients' engagement in remote follow-up. Future studies should explore the impact of involving relatives in PRO-based follow-up.

Electronic symptom monitoring in patients with metastatic lung cancer: a feasibility study.

OBJECTIVES: To design an electronic questionnaire for symptom monitoring and to evaluate the feasibility, usability and acceptability when applied to patients with metastatic lung cancer. SETTING: Single-centre feasibility study. PARTICIPANTS: Patients with stage IV lung cancer in antineoplastic treatment. INTERVENTIONS: This study describes the first three phases of a complex intervention design: phase 1, development of the intervention; phase 2, feasibility testing and phase 3, evaluation of the intervention. In phase 1, items were selected for the questionnaire and adjusted following patient interviews. In phase 2, patients completed the electronic questionnaire weekly during a 3-week feasibility test. In case of symptom deterioration, a nurse was notified with the aim to contact the patient. In phase 3, patients evaluated phase 2 by paper questionnaires, and interviews were conducted with the participating nurses. PRIMARY OUTCOME MEASURES: The study outcomes: phase 1, usability and relevance; phase 2, recruitment rate, compliance and threshold functionality and phase 3, usability, acceptability and relevance. RESULTS: In phase 1, a questionnaire was designed and reviewed by patients (n=8). The interviews revealed high usability and relevance of the intervention.For phases 2 and 3, 20 of 29 approached patients (69%) responded to the questionnaire on a weekly basis. Two patients did not complete any questionnaires (compliance 90%). The remaining 18 patients completed 65 of a total of 72 possible questionnaires (7 missed, 93% completed). Reported symptoms led to a phone call from a nurse in 30% of the responses.The patients reported high usability and acceptability of questionnaire and software. The substance of the telephonic conversations was relevant, and the study set-up was logistically acceptable. CONCLUSIONS: An electronic questionnaire designed for symptom monitoring revealed high usability, acceptability and relevance in the target population. In conclusion, the study set-up was considered feasible for a randomised controlled trial. TRIAL REGISTRATION NUMBER: NCT03529851.

Patient-reported outcome measures in the interaction between patient and clinician - a multi-perspective qualitative study.

BACKGROUND: This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients' PRO data filled in by the patients at home are used by clinicians as a decision aid to identify those who need clinical attention based on an automated PRO algorithm, clinical attention being either a phone call or a physical consultation. A physical consultation in the outpatient clinic prompted by the patient's PRO is termed a "PRO consultation." In this multi-perspective qualitative study, we explored the influence of patients' self-reported data on patient-clinician interaction during PRO consultations in epilepsy outpatient clinics. Interpretive description was the methodological approach, applying data from participant observations, informal interviews with clinicians, and semi-structured interviews with clinicians and patients. RESULTS: We found that application and deliberate use of patients' PRO measures can affect patient-clinician interaction, promoting patient involvement in terms of improved communication and increased patient activation. These findings reflect the general patterns that have been reported in the literature. In addition, we found that PRO measures also may induce unmet expectations among some patients that can have a negative effect on patients' experiences of the interaction and their follow-up experience in general. We extracted two thematic patterns that represent PRO measures' potential for patient involvement in the patient-clinician interaction. The first pattern represents enablers, and the second pattern represents barriers for PRO measures to affect patient involvement. CONCLUSIONS: Applying PRO measures in clinical practice does not automatically enhance the patient-clinician interaction. To strengthen the benefits of PRO measures, the following supplementary clinical initiatives are suggested: summarizing and reporting the PRO measures back to the patient, considering carefully which PRO measures to include, training clinicians and assuring that the patients' introduction to PRO-based follow-up clarifies expectations.

Patient-initiated versus fixed-interval patient-reported outcome-based follow-up in outpatients with epilepsy: a pragmatic randomized controlled trial.

BACKGROUND: The use of patient-reported outcome (PRO) could potentially contribute to the reorganization of the health care system. AmbuFlex is a PRO system used in remote patient monitoring, in which questionnaires are sent to patients at fixed intervals. The PRO data are used by clinicians to decide whether patients need clinical attention. Better self-management and cost-saving follow-up activities may be achieved by letting patients initiate need of contact. We evaluated the effects of patient-initiated PRO-based outpatient follow-up on health care resource utilization, quality of care, and the patient perspective. METHODS: We conducted a parallel two-arm pragmatic randomized controlled trial at the Department of Neurology, Aarhus University Hospital, Denmark. Outpatients with epilepsy (≥ 15 years old), attending fixed-interval PRO-based follow-up with web-based questionnaires, were randomly assigned in a ratio of 0.55:0.45 to either 1) patient-initiated PRO-based follow-up (open access telePRO) or 2) fixed-interval PRO-based follow-up (standard telePRO). The primary outcome was the number of outpatient hospital contacts related to epilepsy retrieved from a regional registry. Hospitals admissions and emergency room visits were also assessed. Secondary self-reported outcomes including general health, well-being, health literacy, self-efficacy, number of seizures, side effects, confidence, safety, and satisfaction were retrieved from questionnaires. Data were analyzed by the intention-to-treat and per-protocol approaches. RESULTS: Between January 2016 and July 2016, 593 patients were randomized to either open access telePRO (n = 346) or standard telePRO (n = 247). At 18 months, no statistically significant differences were found between the arms regarding number of telephone consultations or outpatient visits. Patients in the open access arm had a slightly lower, statistically significant number of emergency room visits than patients in the standard arm. Self-reported mental well-being in the open access arm was slightly, statistically significantly lower than in the standard arm. Other secondary outcomes did not differ statistically significantly between arms. CONCLUSION: This study did not find, as hypothesized, less use of health care resources or improved patient self-management or satisfaction in the patient-initiated PRO-based initiative compared to fixed-interval PRO-based follow-up. Patient-initiated PRO-based follow-up may be used as an alternative to fixed-interval PRO-based follow-up in patients who prefer this approach, but there is insufficient evidence for recommending a system-wide shift to patient-initiated PRO-based follow-up. TRIAL REGISTRATION: Registered 4 February 2016 with ClinicalTrials.gov: NCT02673580 .

PRO-based follow-up as a means of self-management support - an interpretive description of the patient perspective.

BACKGROUND: There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve the quality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where the patient's PRO measures are used as the very basis for outpatient follow-up. OBJECTIVES: This study aimed to explore how patients with epilepsy experience the use of PRO-based follow-up in three outpatient clinics in the Central Denmark Region. We also sought to explain how these experiences relate to self-management. METHODS: Interpretive description was the methodological approach. We conducted in-depth individual interviews with 29 patients referred to PRO-based follow-up, each of whom had completed at least two PRO questionnaires. Participants were sampled based on purposive and theoretical sampling. RESULTS: PRO-based follow-up may support patients' self-management by a) increasing awareness of psychosocial problems, b) improving communication, c) increasing understanding of symptoms, d) facilitating change in health behavior and e) strengthening autonomy. Inhibitors for PRO measures as a means of self-management support were identified as a) feelings of rejection and disconnection, b) incomprehension of purpose of PRO-based follow-up, c) PRO measures being too standardized and negative and d) lack of confidence in own ability to assess PRO questionnaires. CONCLUSION: The findings demonstrate broad variation in the influences of PRO measures on patient's self-management in life with epilepsy. Sense of ownership may explain this variation. We suggest supplementary clinical initiatives in order to enhance the benefits from PRO-based follow-up, particularly on how patients are allocated to this health care service.