Lost in the loop - a qualitative study on patient experiences of care in standardized cancer patient pathways.

BACKGROUND: The Norwegian health authorities introduced standardized cancer patient pathways (CPPs) in 2015, aiming to reduce practice variations across hospitals and regions, and improve the continuity, coordination and overall quality of the health care service provided to cancer patients. There has been few studies investigating this change, and that have looked into the organisational and economic benefits of standardized pathways, however the element of care and the patient perspective has been especially neglected. This study explored the care element in cancer patient pathways through an in-depth study of patient experiences. METHODS: The patients were enrolled approximately three years after the introduction of standardized CPPs in Norway. Through a qualitative design with in-depth interviews, a total of 21 interviews were conducted with seven patients between 2018 and 2020. The first interview took place after the diagnosis was established and before treatment, the second interview during treatment, and the final interview approximately one year after the completion of active treatment. The empirical catchment area was eastern Norway. Data were analysed using a theoretical thematic analysis. RESULTS: This study sheds light on the complex challenges patients' faces, while navigating CPPs, including the need for better transition support, improved coordination and continuity in care, and a more holistic approach that encompasses emotional well-being and family support. Three overarching themes were identified: [1] Navigating CPPs: patient care and transition challenges, [2] Fragmented cancer care: challenges in coordination and continuity [3] Unmet needs and overlooked opportunities in CPPs. CONCLUSIONS: Patients experience that cancer patient pathways offer good medical treatment, but that the care element deserves more attention. Current CPPs are trapped in a logic of choice, preventing room for the element of care to receive the attention it requires for the patient to truly experience holistic person-centred care and continuous, well-coordinated services. Based in our study we argue there is a need to look into the missed opportunities for using the CPPs as points of departure for more holistic collaborative models for cancer care.

Music-based environmental therapy and training programme: a qualitative evaluation study, Norway.

Various authors have emphasized music's value as beneficial intervention, with few or hardly any side effects. Further studies are called for on how music-based environmental treatment in nursing homes works in practice. The aims of the study are first to explore the subjective experiences, opinions and attitudes of health personnel from nursing homes participating in the 'music-based environmental therapy programme (MB programme); and second, to examine why and how this programme impacts on patients and staff, and how it works in practice. It is the first qualitative study to evaluate the impact of the programme on health personnel's daily practice in nursing homes. The sample was strategically selected by means of convenience sampling, and consisted of 26 (n = 26) nurses, managers, physiotherapists, social workers and carers from 11 nursing homes in the south-east of Norway. Data were collected in autumn 2019 using a methodological triangulation of in-depth interviews, focus groups and passive observation, and the data were analyzed using systematic text condensation. With systematic use of music in daily activities in the nursing homes, users became calmer and less outspoken, and the use of psychotropic drugs was greatly reduced. The MB programme seems to be a successful intervention that provides a unique opportunity to improve patients' health and well-being with minimal adverse effects. This new focus on non-pharmacological approaches makes investigation of alternatives to medication vital.

Facilitators and Barriers That Transfemoral Amputees Experience in Their Everyday Life: A Norwegian Qualitative Study.

Background: Living with a lower limb amputation influences multiple facets of life due to altered function. Individuals achieve a varied level of function post amputation, depending on several variables like age, level of function prior to amputation, and available personal and environmental resources. Releasing the potential to live life to the fullest despite a disability is important to the individual. Objectives: The primary objective of this study is to identify barriers and facilitators for function which lower limb amputees experience in their lives several years after amputation, from the amputee's perspective. This knowledge can contribute to further development of the clinical pathway for lower limb amputees in a Norwegian rehabilitation hospital. Methods: The study has a descriptive and exploratory qualitative design with a phenomenological hermeneutical approach. Semistructured, individual interviews were conducted for data collection. Thematic analysis inspired by Braun and Clarke was used for data analysis. The sample consisted of eight transfemoral amputees (70 ± 6.9 (58-77 years)) living in the southern part of Norway. Average time since amputation was 11 years. Results: The results have been categorised into two main themes with subthemes: (1) facilitators: personal resources, a well-fitted prosthesis, rehabilitation, social network, balance in activity/rest, and accessibility and (2) barriers: walking distance, poorly fitted prosthesis, pain, comorbidities, climate/terrain/falling, reduced local competence on amputation, and pandemic. Conclusion: Lower limb amputees experience barriers in their everyday life, but they also develop strategies to cope with their disability. Clinical implications can include increased nutritional guidance, structural psychological mapping and follow-up, structured follow-ups over a significant period of time, and extended use of digital consultation.

An emotional roller coaster - family members' experiences of being a caregiver throughout a cancer trajectory.

PURPOSE: To explore family members' experiences of caregiving throughout a cancer trajectory from diagnosis until around one year after chemotherapy and radiation treatment ended. METHOD: We conducted a longitudinal qualitative study using in-depth interviews with 13 family members at one to three points of time: before, during, and after treatment. To analyse the interviews, we leaned on Braun and Clark procedure for thematic analysis. RESULT: The analysis revealed three themes in family members' experiences of being a caregiver to a cancer patient throughout a cancer trajectory. These were: (1) From the time of diagnosis-overwhelming and uncertain; (2) During and after treatment-invisible and not involved; (3) Throughout the cancer trajectory-an emotional roller coaster. CONCLUSION: The results indicated that the family members felt invisible and not involved and they experienced being a caregiver throughout the cancer trajectory as an emotional roller coaster. Our empirical findings thus indicate that in cancer care, family perspectives are yet to be implemented in daily practice. This is in contrast to explicit goals in current health policies underlining support and involvement of family members as a core aspect in cancer care.

Dilemmas and deliberations in managing the care trajectory of elderly patients with complex health needs: a single-case study.

BACKGROUND: Today, the ageing population is larger than ever before, and people who are living longer with chronic illnesses and multimorbidity need support from multiple healthcare service levels. Similarly, healthcare systems are becoming increasingly specialised and fragmented. The World Health Organization has highlighted novel policies for developing integrated and person-centred services. However, patients, next of kin and health professionals face several challenges in managing healthcare during the care trajectory. Limited literature has addressed the challenges experienced by these groups. Therefore, this study aimed to identify the dilemmas and deliberations faced by patients, next of kin and health professionals during the care trajectory of elderly patients with complex healthcare needs. METHOD: The study had a qualitative single-case design. The case was taken from a multi-case study exploring the care trajectory of elderly patients. The participants were the patient, their next of kin and the health professionals involved in the patient's care trajectory. Data were obtained via observation and individual interviews conducted during the patient's hospital stay and after the patient returned home. RESULTS: The dilemmas and deliberations in managing the care trajectory were divided into four main themes: the health professionals' pursuit of appropriate and feasible healthcare services, the next of kin's planning horizons, being the person left in limbo and reorganising the home for comprehensive healthcare. CONCLUSION: The pursuit of a tailored and suitable healthcare service lead to a comprehensive mobilisation of and work by all actors involved. Having a comprehensive understanding of these conditions are of importance in developing an appropriate care trajectory for the elderly patient with complex need.

In Limbo: Seven Families' Experiences of Encounter with Cancer Care in Norway.

INTRODUCTION: Like many other countries, Norway has seen a shift from inpatient to outpatient cancer care, with pathways aimed at improving the integration and coordination of health services. This study explores the perspectives of seven patients and their family members in light of this change. We focus on one particular phase of the pathway: the first encounter. Our interviews were set in the period from referral until the start of treatment. METHODS: Nineteen individual in-depth interviews were conducted in seven families. Seven patients with cancer and 12 family members were interviewed. RESULTS: Three categories of experiences stood out in the empirical material: 'Being in between different health professionals', 'Overwhelmed by written and oral information' and 'Lack of involvement'. CONCLUSION: This study provides insight into families' experiences with cancer care from referral until the start of treatment. Our findings indicate that families often experience cancer care as fragmented and confusing. Although evaluations have shown that the introduction of cancer pathways seems to have a positive effect on waiting times and standardization of examinations across hospitals and regions, there is still potential for improvement in coordination between services, family involvement, and emotional and practical support. We argue that our findings highlight the tension between two ideals of professional care: standardization and patient-centredness. The study illustrates shortcomings in translating the ideal of patient-centredness into professional practice.

Interviews with Community Healthcare Registered Nurses in Norway: Examination Practices and Clinical Evaluation Processes.

AIM: This study describes the examination practices and clinical evaluation processes that Registered Nurses in Norway perform in the community healthcare sector. DESIGN: A qualitative exploratory design. METHODS: Twenty interviews were conducted with Registered Nurses employed in the community healthcare sector in Norway. The data were analysed using a thematic analysis. RESULTS: We found four major themes: (1) evaluations are embedded in nurses' daily work, (2) significance of a Registered Nurse's clinical competency, (3) different tasks require various roles and (4) access to resources and equipment. Registered Nurses possess several skills in a range of different examination techniques and clinical evaluation processes in the community healthcare sector. They perform complex assessments in their daily work and must rely on other healthcare professionals, facilities and equipment to provide high-quality care. Ongoing education and training will enable Registered Nurses to complete accurate assessments in their community healthcare practice.

Real time remote symptom monitoring during chemotherapy for cancer: European multicentre randomised controlled trial (eSMART).

OBJECTIVE: To evaluate effects of remote monitoring of adjuvant chemotherapy related side effects via the Advanced Symptom Management System (ASyMS) on symptom burden, quality of life, supportive care needs, anxiety, self-efficacy, and work limitations. DESIGN: Multicentre, repeated measures, parallel group, evaluator masked, stratified randomised controlled trial. SETTING: Twelve cancer centres in Austria, Greece, Norway, Republic of Ireland, and UK. PARTICIPANTS: 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin's disease, or non-Hodgkin's lymphoma receiving first line adjuvant chemotherapy or chemotherapy for the first time in five years. INTERVENTION: Patients were randomised to ASyMS (intervention; n=415) or standard care (control; n=414) over six cycles of chemotherapy. MAIN OUTCOME MEASURES: The primary outcome was symptom burden (Memorial Symptom Assessment Scale; MSAS). Secondary outcomes were health related quality of life (Functional Assessment of Cancer Therapy-General; FACT-G), Supportive Care Needs Survey Short-Form (SCNS-SF34), State-Trait Anxiety Inventory-Revised (STAI-R), Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer), and work limitations questionnaire (WLQ). RESULTS: For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, whereas controls reported an increase from cycle 1 onwards (least squares absolute mean difference -0.15, 95% confidence interval -0.19 to -0.12; P<0.001; Cohen's D effect size=0.5). Analysis of MSAS sub-domains indicated significant reductions in favour of ASyMS for global distress index (-0.21, -0.27 to -0.16; P<0.001), psychological symptoms (-0.16, -0.23 to -0.10; P<0.001), and physical symptoms (-0.21, -0.26 to -0.17; P<0.001). FACT-G scores were higher in the intervention group across all cycles (mean difference 4.06, 95% confidence interval 2.65 to 5.46; P<0.001), whereas mean scores for STAI-R trait (-1.15, -1.90 to -0.41; P=0.003) and STAI-R state anxiety (-1.13, -2.06 to -0.20; P=0.02) were lower. CASE-Cancer scores were higher in the intervention group (mean difference 0.81, 0.19 to 1.43; P=0.01), and most SCNS-SF34 domains were lower, including sexuality needs (-1.56, -3.11 to -0.01; P<0.05), patient care and support needs (-1.74, -3.31 to -0.16; P=0.03), and physical and daily living needs (-2.8, -5.0 to -0.6; P=0.01). Other SCNS-SF34 domains and WLQ were not significantly different. Safety of ASyMS was satisfactory. Neutropenic events were higher in the intervention group. CONCLUSIONS: Significant reduction in symptom burden supports the use of ASyMS for remote symptom monitoring in cancer care. A "medium" Cohen's effect size of 0.5 showed a sizable, positive clinical effect of ASyMS on patients' symptom experiences. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the covid-19 pandemic. TRIAL REGISTRATION: Clinicaltrials.gov NCT02356081.

Unpacking Healthcare Professionals' Work to Achieve Coherence in the Healthcare Journey of Elderly Patients: An Interview Study.

AIM: Today, seamless, person-centered healthcare is emphasized when dealing with elderly patients with comprehensive needs. Studies have uncovered a complex healthcare terrain. Despite a great deal of effort on the part of policy makers and healthcare providers, the work healthcare professionals undertake to develop seamless healthcare is still unclear. Therefore, the aim of this study was to uncover the work that healthcare professionals undertake to achieve coherent and comprehensive healthcare for elderly patients with multiple health problems during their journey through the complex healthcare terrain. METHODS: This study has an explorative design with individual interviews. Twenty-five healthcare professionals from primary and specialist care agreed to participate. A thematic analysis method was employed. RESULTS: The analyses revealed three central themes in the healthcare professionals' work to build coherence in the patients' care trajectory: Working to manage a patient's illness trajectory during the course of the patient's life, working to achieve a comprehensive overall picture, and considering multiple options in a "patchwork" terrain. CONCLUSION: Healthcare professionals have a common understanding that hospital stays are a short part of the elderly person's journey in the healthcare system. In the comprehensive work to obtain the overall picture of the illness trajectory within the patient's life story, healthcare professionals emphasized the importance of working in an interdisciplinary manner. Interprofessional consulting and collaboration should be strengthened to build coherence in the older patient's complex care trajectory.

Elderly patients with complex health problems in the care trajectory: a qualitative case study.

BACKGROUND: Elderly patients with multiple health problems often experience disease complications and functional failure, resulting in a need for health care across different health care systems during care trajectory. The patients' perspective of the care trajectory has been insufficiently described, and thus there is a need for new insights and understanding. The study aims to explore how elderly patients with complex health problems engage in and interact with their care trajectory across different health care systems where several health care personnel are involved. METHODS: The study had an explorative design with a qualitative multi-case approach. Eleven patients (n = 11) aged 65-91 years participated. Patients were recruited from two hospitals in Norway. Observations and repeated interviews were conducted during patients' hospital stays, discharge and after they returned to their homes. A thematic analysis method was undertaken. RESULTS: Patients engaged and positioned themselves in the care trajectory according to three identified themes: 1) the patients constantly considered opportunities and alternatives for handling the different challenges and situations they faced; 2) patients searched for appropriate alliance partners to support them and 3) patients sometimes circumvented the health care initiation of planned steps and took different directions in their care trajectory. CONCLUSIONS: The patients' considerations of their health care needs and adjustments to living arrangements are constant throughout care trajectories. These considerations are often long term, and the patient engagement in and management of their care trajectory is not associated with particular times or situations. Achieving consistency between the health care system and the patient's pace in the decision-making process may lead to a more appropriate level of health care in line with the patient's preferences and goals.

Adaptation and Implementation of a Mobile Phone-Based Remote Symptom Monitoring System for People With Cancer in Europe.

BACKGROUND: There has been an international shift in health care, which has seen an increasing focus and development of technological and personalized at-home interventions that aim to improve health outcomes and patient-clinician communication. However, there is a notable lack of empirical evidence describing the preparatory steps of adapting and implementing technology of this kind across multiple countries and clinical settings. OBJECTIVE: This study aimed to describe the steps undertaken in the preparation of a multinational, multicenter randomized controlled trial (RCT) to test a mobile phone-based remote symptom monitoring system, that is, Advanced Symptom Management System (ASyMS), designed to enhance management of chemotherapy toxicities among people with cancer receiving adjuvant chemotherapy versus standard cancer center care. METHODS: There were 13 cancer centers across 5 European countries (Austria, Greece, Ireland, Norway, and the United Kingdom). Multiple steps were undertaken, including a scoping review of empirical literature and clinical guidelines, translation and linguistic validation of study materials, development of standardized international care procedures, and the integration and evaluation of the technology within each cancer center. RESULTS: The ASyMS was successfully implemented and deployed in clinical practices across 5 European countries. The rigorous and simultaneous steps undertaken by the research team highlighted the strengths of the system in clinical practice, as well as the clinical and technical changes required to meet the diverse needs of its intended users within each country, before the commencement of the RCT. CONCLUSIONS: Adapting and implementing this multinational, multicenter system required close attention to diverse considerations and unique challenges primarily related to communication and clinical and technical issues. Success was dependent on collaborative and transparent communication among academics, the technology industry, translation partners, patients, and clinicians as well as a simultaneous and rigorous methodological approach within the 5 relevant countries.

"Teamwork in hospitals": a quasi-experimental study protocol applying a human factors approach.

BACKGROUND: Effective teamwork and sufficient communication are critical components essential to patient safety in today's specialized and complex healthcare services. Team training is important for an improved efficiency in inter-professional teamwork within hospitals, however the scientific rigor of studies must be strengthen and more research is required to compare studies across samples, settings and countries. The aims of the study are to translate and validate teamwork questionnaires and investigate healthcare personnel's perception of teamwork in hospitals (Part 1). Further to explore the impact of an inter-professional teamwork intervention in a surgical ward on structure, process and outcome (Part 2). METHODS: To address the aims, a descriptive, and explorative design (Part 1), and a quasi-experimental interventional design will be applied (Part 2). The study will be carried out in five different hospitals (A-E) in three hospital trusts in Norway. Frontline healthcare personnel in Hospitals A and B, from both acute and non-acute departments, will be invited to respond to three Norwegian translated teamwork questionnaires (Part 1). An inter-professional teamwork intervention in line with the TeamSTEPPS recommend Model of Change will be implemented in a surgical ward at Hospital C. All physicians, registered nurses and assistant nurses in the intervention ward and two control wards (Hospitals D and E) will be invited to to survey their perception of teamwork, team decision making, safety culture and attitude towards teamwork before intervention and after six and 12 months. Adult patients admitted to the intervention surgical unit will be invited to survey their perception of quality of care during their hospital stay before intervention and after six and 12 month. Moreover, anonymous patient registry data from local registers and data from patients' medical records will be collected (Part 2). DISCUSSION: This study will help to understand the impact of an inter-professional teamwork intervention in a surgical ward and contribute to promote healthcare personnel's team competences with an opportunity to achieve changes in work processes and patient safety. TRIAL REGISTRATION: Trial registration number (TRN) is ISRCTN13997367. The study was registered retrospectively with registration date 30.05.2017.

The eSMART study protocol: a randomised controlled trial to evaluate electronic symptom management using the advanced symptom management system (ASyMS) remote technology for patients with cancer.

INTRODUCTION: While some evidence exists that real-time remote symptom monitoring devices can decrease morbidity and prevent unplanned admissions in oncology patients, overall, these studies have significant methodological weaknesses. The electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology (eSMART) study is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised controlled trial of oncology patients. METHODS AND ANALYSIS: A total of 1108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal or haematological cancer will be recruited from multiple sites across five European countries.Patients will be randomised (1:1) to the ASyMS intervention (intervention group) or to standard care currently available at each site (control group). Patients in the control and intervention groups will complete a demographic and clinical questionnaire, as well as a set of valid and reliable electronic patient-reported outcome measures at enrolment, after each of their CTX cycles (up to a maximum of six cycles) and at 3, 6, 9 and 12 months after completion of their sixth cycle of CTX. Outcomes that will be assessed include symptom burden (primary outcome), quality of life, supportive care needs, anxiety, self-care self-efficacy, work limitations and cost effectiveness and, from a health professional perspective, changes in clinical practice (secondary outcomes). ETHICS AND DISSEMINATION: Ethical approval will be obtained prior to the implementation of all major study amendments. Applications will be submitted to all of the ethics committees that granted initial approval.eSMART received approval from the relevant ethics committees at all of the clinical sites across the five participating countries. In collaboration with the European Cancer Patient Coalition (ECPC), the trial results will be disseminated through publications in scientific journals, presentations at international conferences, and postings on the eSMART website and other relevant clinician and consumer websites; establishment of an eSMART website (www.esmartproject.eu) with publicly accessible general information; creation of an eSMART Twitter Handle, and production of a toolkit for implementing/utilising the ASyMS technology in a variety of clinical practices and other transferable health care contexts. TRIAL REGISTRATION NUMBER: NCT02356081.

The role of contrast-enhanced ultrasound in the classification of CT-indeterminate renal lesions.

OBJECTIVE: Focal renal lesions are common incidental findings on computed tomography (CT). For lesions with a cystic appearance, the Bosniak classification system has enabled an important separation of benign and (potentially) malignant cysts, giving a practical guide for management. The purpose of this study was to evaluate contrast-enhanced ultrasound (CEUS) as a problem-solving modality for classification of indeterminate renal lesions detected with CT. MATERIALS AND METHODS: In total, 140 consecutive patients with 148 indeterminate renal lesions were examined with ultrasound combined with CEUS (81 men and 59 women with mean age 63.8 years). RESULTS: Altogether, 146 lesions were classified by CEUS in categories according to the Bosniak classification system, or as solid lesions. Mean lesion diameter was 30 mm (range 5-166 mm). Nine lesions were classified as category I, 32 as category II and 59 as category IIF ("non-surgical lesions"). 48 IIF cysts were followed for a minimum of 2 years (mean 4 years and 8 months): three lesions were upgraded to category III (6%) and 45 were stable category. 19 lesions had a more complex cystic appearance: 12 were classified as category III and seven as category IV cysts. 27 lesions were diagnosed as solid, enhancing tumors. In total, 25 patients with lesions of category III, IV and solid ("surgical lesions") underwent renal surgery, with malignancy diagnosed in 18. CONCLUSION: In the common setting of indeterminate renal lesions incidentally detected with a CT exam, CEUS has the potential to classify lesions into "non-surgical" and "surgical" categories, providing a platform for urological decision making, while avoiding radiation exposure.

A holistic-existential approach to health promotion.

Health promotion seems to be implicit in many nursing theories, but the theoretical and philosophical basis of health promotion in nursing is not always explicitly stated. The interpretation of health promotion is closely related to the interpretation of man, health, illness and nursing. There is a need to clarify, refine and redefine health promotion in nursing because the concept is partly nonspecific and has not been used to identify a distinctive nursing focus. The aim of this study was to formulate a stipulative definition of health promotive nursing with a holistic-existential approach. A philosophical frame of reference in combination with conceptual analysis and theoretical synthesis were used as the methodological approach. The philosophical framework served as a basis in selecting the nursing theories and influenced the analysis. Two nursing theories and one nursing model were selected due to their influence on Norwegian nursing and because of their philosophical basis. Through analysis and synthesis of the selected nursing theories, the concepts man, health, illness/disease and nursing were analysed. The paper proposes a stipulative definition of health promotion in nursing based on a holistic-existential approach, supported by five necessary conditions. The definition and conditions needs to be further investigated by both empirical studies and by comparing with other relevant nursing theories, in order to formulate theoretical statements. The proposed definition may be the first step in a process of developing a theoretical framework of health promotive nursing with a holistic-existential approach.