Electronic patient-reported outcome measures to enable systematic follow-up in treatment and care of women diagnosed with breast cancer: a feasibility study protocol.

INTRODUCTION: The use of patient-reported outcome measures (PROMs) in clinical practice has the potential to promote person-centred care and improve patients' health-related quality of life. We aimed to develop an intervention centred around electronic PROMs (ePROMs) for systematic follow-up in patients diagnosed with breast cancer and to evaluate its feasibility. METHODS AND ANALYSIS: We developed a nurse-oriented and surgeon-oriented intervention in PROMs, including (1) an education programme for nurses and surgeons; (2) administration of BREAST-Q as proactive ePROMs during follow-up in patients diagnosed with breast cancer and (3) feedback to nurses and surgeons on PROM scores and a guidance manual for healthcare practitioners. Subsequently, we designed a non-controlled feasibility evaluation on the outcomes acceptability, demand, implementation, practicality and integration. The feasibility evaluation includes qualitative ethnographic studies exploring the user perspectives of patients, nurses and surgeons and quantitative studies to explore the characteristics of the patient population regarding demographic background, response rates and response patterns. The feasibility study was initiated in September 2021, will continue until 2024 and will include approximately 900 patients. EPROMs are collected at the following assessment time points: baseline (after diagnosis, before surgery), 1-year follow-up and 3-year endpoint. ETHICS AND DISSEMINATION: The study will be conducted according to the General Data Protection Regulation and the fifth version of the Helsinki Declaration. The National Committee on Health Research Ethics approved the study according to the law of the Committee § 1, part 4. All data will be anonymised before its publication. The results of the feasibility study will be published in peer-reviewed, international journals.

On the frontline treating COVID-19: A pendulum experience-from meaningful to overwhelming-for Danish healthcare professionals.

OBJECTIVES: In the current study, we aimed to explore the experiences and attitudes among healthcare professionals as they transitioned from their familiar disciplines to respiratory medicine, intensive care or other departments during the first wave of the COVID-19 pandemic. BACKGROUND: In preparation for the increasing number of patients suspected of having or who would be severely ill from COVID-19, a major reconstruction of the Danish Healthcare System was initiated. The capacity of the healthcare system to respond to the unprecedented situation was dependent on healthcare professionals' willingness and ability to engage in these new circumstances. For some, this may have resulted in uncertainty, anxiety and fear. DESIGN: The study was a descriptive study using semi-structured focus group interviews. Healthcare professionals (n = 62) from seven departments were included, and 11 focus group interviews were conducted. The focus group interviews took place during June 2020. Analyses was conducted using thematic analysis. The current study was reported using the consolidated criteria for reporting Qualitative research (COREQ). RESULTS: Healthcare professionals experiences was described by five themes: 1) Voluntary involvement, 2) Changes within the organisation, 3) Risks, 4) Professional identity and 5) Personal investment. Common to all five themes was the feeling of being on a pendulum from a meaningful experience to an experience of mental overload, when situations and decisions no longer seemed to be worthwhile. CONCLUSIONS: Healthcare professionals experienced a pendulum between a meaningful experience and one of mental overload during the COVID-19 pandemic. The swinging was conditioned by the prevailing context and was unavoidable. RELEVANCE TO CLINICAL PRACTICE: To balance the continuous pendulum swing, leaders must consider involvement, and to be supportive and appreciative in their leader style. This is consistent with a person-centred leadership that facilitates a well-adjusted work-life balance and may help prevent mental overload developing into burnout.

Improving Person-Centred Leadership: A Qualitative Study of Ward Managers' Experiences During the COVID-19 Crisis.

PURPOSE: In order to provide guidance and prepare ward managers for future crisis situations similar to the COVID-19 pandemic, the aim of this study was to reflect and learn how person-centred nursing leadership may be strengthened in such situations. BACKGROUND: The pandemic has forced nurse leaders to face new challenges. Knowledge about their experiences may contribute to advancing leadership practices in times of future crises. METHODS: A qualitative directed content analysis was chosen. The theoretical perspective was person-centred leadership. Thirteen ward managers from a Danish university hospital were included and interviewed using telephone interviews three months after the first national COVID-19 case was confirmed. FINDINGS: The main findings of the study revealed that the ward managers often experienced a lack of timely, relevant information, involvement in decision-making and acknowledgement from the head nurse of department and the executive management. This was caused by the existing organizational cultures and the traditional hierarchy of communication. This meant that the ward managers' sense of own competences and leadership values and beliefs came under high pressure when they had to balance different stakeholders' needs. CONCLUSION: When the experience of ward managers results in them being unable to lead authentically and competently in a crisis like the COVID-19 pandemic, lack of engagement can occur, with serious consequences for patients, staff and the ward managers themselves. Traditional organizational cultures that are hierarchical and controlling needs to be challenged and reoriented towards collaborative, inclusive and participative practices of engagement and involvement. Leadership development must be an established and integrated component of organizations, so that ward managers are able to sustain person-centred ways of being and doing in times of crisis.

Health Professional Frontline Leaders' Experiences During the COVID-19 Pandemic: A Cross-Sectional Study.

PURPOSE: The aim was to identify the differences in experiences of Danish healthcare leaders in the beginnning of the coronavirus (COVID-19) pandemic and to generate knowledge for future leadership during and post crises. BACKGROUND: The global spread of COVID-19 has affected healthcare systems worldwide and has forced healthcare leaders to face challenges few were prepared for. It is expected that the pandemic may hit in several waves within the next year and therefore healthcare leaders must be prepared for these waves. METHODS: An online survey was developed, and comparative analyses were performed. RESULTS: One hundred and sixty hospital leaders were invited, and 72% completed the questionnaire. Significant differences were found within three selected characteristics: 1) Management level: significantly more heads of departments experienced taking complex decisions (P=0.05), being able to work in a way consistent with their beliefs and values (P=0.05), and they were less likely to experience that collaboration with other leaders was adversely affected by the COVID-19 situation compared to ward managers (P=0.04). On the other hand, ward managers were significantly more often worried about both their own health (P=0.01) and their family's health (P=0.04). 2) Management education: those with a formal management education more often experienced having the managerial competences to effectively manage the COVID-19 situation (P=0.00), and performing meaningful tasks during the situation (P=0.04). 3) Years of experience: significantly more leaders with more than five years of experience identified having the managerial competences to effectively manage the situation (P=0.01). CONCLUSION: Leadership support during a healthcare crisis like the COVID-19 pandemic should strategically focus on ward managers, leaders with no formal management education and leaders with less than two years of experience. Hospital leaders may use this knowledge to re-contextualize what is already known about targeted leadership support during healthcare crises and to act accordingly.

Nurses' Experiences When Introducing Patient-Reported Outcome Measures in an Outpatient Clinic: An Interpretive Description Study.

BACKGROUND: Application of patient-reported outcome measures (PROM) seems to be a step toward person-centered care and identifying patients' unmet needs. OBJECTIVE: To investigate the experiences of nurses when PROMs were introduced in a hematological clinical practice as part of a multimethod intervention study. METHODS: The qualitative framework was guided by the interpretive description (ID) methodology, including a focused ethnographic approach with participant observations and interviews. The instruments introduced were the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and the Outcomes and Experiences Questionnaire. Analysis was inspired by Habermas' critical theory. RESULTS: The analysis revealed 2 predominant themes of nurses' experiences: "PROMs are only used when there is time-which there rarely is" and "PROMs cannot be used without a strategy, just because they are present." CONCLUSIONS: Nurses' experiences with PROMs depended on the systems' rationale, resulting in limited capacity to use and explore PROMs. Nurses believed that PROMs might have the potential to support clinical practice, as PROMs added new information about patients' conditions but also identified needs within supportive care, leaving the potential of PROMs uncertain. Simply introducing PROMs to practice does not necessarily actuate their potential because use of PROMs is dependent on institutional conditions and mandatory tasks are prioritized. IMPLICATIONS FOR PRACTICE: This study contributes knowledge of nurses' experiences when introducing PROMs in a hematological outpatient clinical practice. Findings can guide future PROMs research within the field of nursing.

User experiences on implementation of patient reported outcome measures (PROMs)in a Haematological outpatient clinic.

BACKGROUND: PROMs can help healthcare professionals gain an improved understanding of patients' physical burdens, functional levels, and (health-related) quality of life throughout disease and medical treatment. The aim of this study was to investigate the barriers and potential opportunities PROMs may present in a haematological outpatient clinic from three different perspectives: patients, nurses and haematologists. METHODS: The present study synthesizes three previously published studies that separately explored the experiences of patients, nurses and haematologists when implementing PROMs. The studies were all guided by the qualitative methodology Interpretive Description, including a focused ethnographic approach, to develop implications for future practice. RESULTS: The overall themes that emerged from the analysis were "Structural similarities influence the adoption of PROMs" and "Different perspectives on the potential of PROMs." CONCLUSION: Across the different user groups in the haematological outpatient clinic, the use of PROMs was thwarted due to an unquestioned commitment to biomedical knowledge and the system's rationality and norms: PROM data was not used in patient consultations. Nurses and haematologists expressed different preferences related to potential future PROMs and different objectives for PROMs in clinical practice. From the different perspectives of the patients, nurses and haematologists, PROMs were not compatible with clinical practice. Further research is recommended to develop PROMs validated for use in haematological outpatient clinics. Moreover, implementation strategies adjusted to the structural barriers of the system are crucial.

"I Am Sure That They Use My PROM Data for Something Important." A Qualitative Study About Patients' Experiences From a Hematologic Outpatient Clinic.

BACKGROUND: Patient-reported outcome measures (PROMs) in clinical practice have the potential to contribute to and support shared decision-making processes by giving voice to patient concerns during consultations. However, the perspectives of patients diagnosed with chronic hematologic cancer on the use of PROMs are unknown. OBJECTIVE: To describe how patients diagnosed with hematologic cancer experience participating in a randomized PROM intervention study, including initial invitation, completion of questionnaires, and outpatient clinic visits. METHODS: A qualitative conceptual framework guided the study, using Interpretive Description with a focused ethnographic approach to explore patient experiences with PROMs in applied practice. Analysis was inspired by Habermas' social theory of communicative action. RESULTS: The analysis revealed 3 predominant themes of patient experiences: that PROMs were "In the service of a good cause," "The questions are not really spot on," and "PROMs are sometimes used for something," that is, unknown to the patient. CONCLUSIONS: The patients' experiences were dominated by the perspective of the healthcare system and by gratitude and imbalanced power relations. During completion of questionnaires, patients struggled to identify with items, and the questionnaires were associated with low content validity. When visiting the outpatient clinic, patients reported that doctors and nurses rarely discussed patients' PROMs. IMPLICATIONS FOR PRACTICE: This study contributes knowledge of patient experiences of the integration of PROMs in hematologic outpatient clinical practice. Findings can guide further research and improve future implementation of PROMs.

Haematologists' experiences implementing patient reported outcome measures (PROMs) in an outpatient clinic: a qualitative study for applied practice.

BACKGROUND: The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is suggested to inform the decision-making process and lead to initiation of care. Yet there are knowledge gaps regarding how meaningful it is to incorporate PROMs in clinical settings. The aim of this study was to investigate haematologists' experiences when PROMs were implemented in an outpatient setting. METHODS: Fourteen participant observations, 13 individual interviews and three in-depth interviews were conducted with haematologists, guided by the qualitative methodology Interpretive Description. Analysis was inspired by Habermas' critical theoretical framework. RESULTS: The haematologists included were characterised by dichotomous experiences with PROMs, either resistant to or supporting their implementation. None were observed to elaborate on PROMs during consultations: instead, primary attention was spent discussing the hematological agenda dictated by the system. CONCLUSION: The use of PROMs for individualized care was linked with extensive uncertainties and PROMs were not requested by the haematologists. To improve individualized care, other approaches may be more suitable. If PROMs are to be incorporated into future clinical practice, they should be tested tothe specific patient group and involve relevant users.