Effectiveness of a novel digital patient education programme to support self-management of early rheumatoid arthritis: a randomised controlled trial.

OBJECTIVES: To evaluate the effectiveness of a novel digital patient education (PE) programme in improving self-management in patients newly diagnosed with rheumatoid arthritis (RA). METHODS: This was a parallel, open-label, two arms, randomised controlled trial with superiority design. Patients from five rheumatology clinics were randomised into digital PE (intervention) or face-to-face PE (control). The primary outcome was self-efficacy, measured by average difference in the Rheumatoid Arthritis Self-Efficacy (RASE) score from baseline to month 12. Secondary outcomes were RA knowledge, health literacy, adherence, and quality of life. Healthcare utilisation data and digital PE programme usage were recorded. Self-efficacy, knowledge, and health literacy data were analysed using mixed-effects repeated measures modelling; adherence using logistic regression, and quality of life and healthcare utilization using descriptive statistics with the Wilcoxon rank-sum test. RESULTS: Of the 180 patients randomised (digital PE, n = 89; face-to-face PE, n = 91), 175 had data available for analysis. Median age was 59.0 years, and 61% were women. The average difference in self-efficacy between groups from baseline to month 12 was significant by a -4.34 difference in RASE score, favouring the intervention group (95%CI -8.17 to -0.51; p= 0.026). RA knowledge, health literacy, and quality of life showed minor improvements over time but no difference between groups, except out-patient clinic contacts which were fewer in the intervention group. CONCLUSIONS: The findings suggest that digital PE is effective in improving self-efficacy and therefore self-management in patients with early RA. This intervention has potential to lower healthcare costs by decreasing out-patient clinic contacts. TRIAL REGISTRATION NUMBER: clinicaltrials.gov, NCT04669340.

Copenhagen Diabetes Consensus (CODIAC) 2021: User involvement in diabetes care, prevention and research.

AIMS: User involvement is pivotal for health development, but there are significant gaps in our understanding of the concept. The Copenhagen Diabetes Consensus on User Involvement in Diabetes Care, Prevention and Research (CODIAC) was established to address these gaps, share knowledge and develop best practices. METHODS: A literature review of user involvement was undertaken in diabetes care, prevention and research. Moreover, a Group Concept Mapping (GCM) survey synthesized the knowledge and opinions of researchers, healthcare professionals and people with diabetes and their carers to identify gaps between what is important for user involvement and what is being done in practice. Finally, a consensus conference discussed the main gaps in knowledge and practice while developing plans to address the shortcomings. RESULTS: The literature review demonstrated that user involvement is an effective strategy for diabetes care, prevention and research, given the right support and conditions, but gaps and key challenges regarding the value and impact of user involvement approaches were found. The GCM process identified 11 major gaps, where important issues were not being sufficiently practised. The conference considered these gaps and opportunities to develop new collaborative initiatives under eight overall themes. CONCLUSIONS: User involvement is effective and adds value to diabetes care, prevention and research when used under the right circumstances. CODIAC developed new learning about the way in which academic and research knowledge can be transferred to more practice-oriented knowledge and concrete collaborative initiatives. This approach may be a potential new framework for initiatives in which coherence of process can lead to coherent outputs.

Experiences of an interprofessional follow-up program in primary care practice.

BACKGROUND: An integrative cooperation of different healthcare professional is a key component for high quality health services. With an aging population and many with long-term conditions, more health tasks and follow-up care are being transferred to primary care and locally where people live. Interprofessional collaboration among providers of different professional designations will be of increasing importance to optimizing primary care capacity in years to come. There is a call for further exploration of models of interprofessional collaboration that might be applicable in Norwegian primary care. The aim of this study was to explore experiences of interprofessional collaboration between primary care physicians and nurses working in primary care by applying an intervention for people with type 2 diabetes. Specifically, this study was designed to strengthen and gain deeper insight into interprofessional collaboration between primary care physicians and nurses in primary care settings. METHODS: We applied Interpretive Description as a research strategy. The participants within this study were primary care physicians and nurses from four different primary care practices in the western and eastern parts of Norway. We used semi-structured telephone interviews for collecting the data between January and September 2021. RESULTS: The analysis revealed two key features of the primary care physicians and the nurses experience with interprofessional collaboration in primary care practices. The first involved managing the influence of discrepancies in their expectations of IPC and the second involved becoming aware of the competence they developed that allowed for better complementarity consultation. CONCLUSIONS: This study indicates that interprofessional collaboration in primary care practice requires that primary care physicians and nurses clarify their expectations and, in turn, determine how flexible they can become in changing their usual primary care practices. Moreover, findings reveal that nurses and primary care physicians had discrepancies in expectations of how interprofessional collaboration should be carried out in primary care practice. However, both the nurses and primary care physicians appreciated the blending of complementary competencies and skills that facilitated a more collaborative care practice. They experienced that this interprofessional collaboration represented an essential quality improvement in the primary care services. TRIAL REGISTRATION: The trial is registered 03/09/2019 in ClinicalTrials.gov (ID: NCT04076384).

Flexible patient-reported outcome-based telehealth follow-up for type 1 diabetes: A qualitative study.

BACKGROUND: Successful diabetes management requires collaboration between patients and healthcare professionals and should be aligned with an individual's condition and resources. We developed a flexible, individualised, patient-reported outcome (PRO)-based telehealth intervention called "DiabetesFlex Care" in which patients completed an annual self-reported questionnaire from home, one required face-to-face appointment, and two optional outpatient consultations. In this study, we investigated patients' experiences using DiabetesFlex Care. METHODS: We conducted a qualitative, interpretive descriptive (ID) study based on semi-structured interviews with a purposeful sample of 36 patients with type 1 diabetes (T1D) who had used DiabetesFlex Care. Recorded audio data were transcribed and analysed inductively using the constant comparative method. RESULTS: DiabetesFlex Care changed participants' perspectives on living with diabetes. Patients became more involved in their own care and found that DiabetesFlex Care helped to make their conversations with healthcare professionals more relevant. Furthermore, participants appreciated the ability to both choose the format of their appointments (face-to-face vs. phone call) and cancel unnecessary appointments. CONCLUSION: DiabetesFlex Care was a flexible and inclusive health service that enabled patients to take more responsibility for their own diabetes management. The questionnaire-based approach in DiabetesFlex Care can help healthcare professionals systematically account for patients' perspectives and support user involvement and self-management. By extension, this approach can also help minimise healthcare-related disruptions in patients' lives. Further studies are needed to determine whether flexible PRO-based telehealth is an acceptable solution for all patients.

Randomized controlled study to evaluate the impact of flexible patient-controlled visits in people with type 1 diabetes: The DiabetesFlex Trial.

AIM: The objective of this study was to assess the impact of health care-initiated visits versus patient-controlled flexible visits on clinical and patient-reported outcomes in people with type 1 diabetes. METHODS: The DiabetesFlex trial was a randomized controlled, pragmatic non-inferiority 15-month follow-up study comparing standard care (face-to-face visits every 4 months) with DiabetesFlex (patient-controlled flexible visits using patient-reported, outcome-based telehealth follow-up). Of 343 enrolled participants, 160 in each group completed the study. The primary outcome was mean change in HbA1c from baseline to 15-month follow-up. Secondary outcomes were blood pressure, lipid levels, frequency of visits, the World Health Organization score-five well-being-index (WHO-5), the Problem Areas In Diabetes (PAID) scale and experience of participation in own care (participation score). RESULTS: The adjusted mean difference in HbA1c between standard care and DiabetesFlex was similar and below the predefined non-inferiority margin of 0.4% (-0.03% [95%CI: 0.15, 0.11]/-0.27 mmol/mol [-1.71, 1.16]). No intergroup mean changes in lipid or blood pressure were observed. Conversely, DiabetesFlex participants presented an increased mean WHO-5 index of 4.5 (1.3, 7.3), participation score of 1.1 (0.5, 2.0), and decreased PAID score of -4.8 (-7.1, -2.6) compared with standard care. During follow-up, DiabetesFlex participants actively changed 23% of face-to-face visits to telephone consultations, cancelled more visits (17% vs. 9%), and stayed away without cancellation less often (2% vs. 8%). CONCLUSION: Compared with standard care, flexible patient-controlled visits combined with patient-reported outcomes in participants with metabolic controlled type 1 diabetes and good psychological well-being further improved diabetes-related well-being and decreased face-to-face visits while maintaining safe diabetes management.

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.

Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study.

PURPOSE: This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. METHODS: A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy-Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. RESULTS: Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. CONCLUSION: The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. TRIAL REGISTRATION: NCT03493906.

Shared decision-making in dialysis choice has potential to improve self-management in people with kidney disease: A qualitative follow-up study.

AIMS: To explore how patients remained involved in their treatment and care of their own health following a shared decision-making intervention for dialysis choice. DESIGN: A follow-up study using semi-structured interviews. METHODS: Individual interviews with 13 patients were conducted immediately following their participation in a shared decision-making intervention for dialysis choice and again 3 months after initiating dialysis. This study reports findings from the follow-up interviews 3 month after dialysis initiation. Data were collected from August 2017-February 2019 and analysed using systematic text condensation. RESULTS: The analysis revealed five main findings, which indicated differing levels of: (a) involvement in the decision-making process; (b) involvement in treatment; (c) involvement in care of own health; (d) involvement of a relative; and (e) support from healthcare professionals. CONCLUSIONS: Following the shared decision-making intervention, patients who chose home-based treatment had become more involved in their treatment and care of their own health. The involvement of relatives and support from healthcare professionals contributed positively to this. In contrast, patients who had chosen hospital-based treatment were less involved in their treatment. IMPACT: Shared decision-making in dialysis choice has potential to improve self-management in people with kidney disease. However, support from healthcare professionals for patients and their relatives should be prioritized in an effort to increase all patients' involvement in their treatment and care of their own health.

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.

"It's probably nothing, but " Couples' experiences of pregnancy following an uncertain prenatal genetic result.

INTRODUCTION: A common concern regarding the introduction of chromosomal microarray in prenatal testing is the concomitant identification of an uncertain copy number variant (CNV) where significance and clinical implication for the unborn child can be difficult or impossible to predict. Following the identification of an uncertain CNV, prospective parents may decide to continue the pregnancy. The aim of this study was to explore how prospective parents manage uncertainty and experience pregnancy in light of an uncertain CNV result. MATERIAL AND METHODS: Qualitative interviews with 16 women and 10 partners who had received a prenatally diagnosed, uncertain CNV. Participants were recruited from the Aarhus University Hospital, Denmark and most were interviewed in their homes 1-14 weeks after birth. Data were analyzed using thematic analysis. RESULTS: Following the CNV diagnosis, some couples focused on the severe syndromes ruled out by the result, whereas others were more concerned with the new potential risks, for example, learning disabilities. Most couples did not remember the actual diagnosis, but all described a number of attention points generated by the CNV result. During pregnancy, the couples used various strategies to limit worry and enjoy their pregnancy, such as limiting information seeking, reducing talk of the CNV, and deferring thoughts of potential consequences. Furthermore, ultrasound was considered a valuable resource for reducing worry as it provided reassurance about the development of the baby. Inherited CNVs caused relief on one hand, but also feelings of responsibility for the child's potential challenges. After birth, worry decreased considerably, but all couples paid some extra attention to the child's development, while also being alert to the risk of wrongfully interpreting the child's development in terms of the CNV. Eleven couples expressed satisfaction with knowing about the child's CNV, whereas five couples would rather not have known. CONCLUSIONS: The results indicate that health professionals should be mindful of terminology, remember to point out what has been ruled out by the CNV result, and discuss potential coping strategies with the couple. Furthermore, these couples may have a higher need for ultrasound during pregnancy to help reduce worry. More research is needed on the families' long-term coping.

Choice of dialysis modality: patients' experiences and quality of decision after shared decision-making.

BACKGROUND: Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients' knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. METHOD: A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of their clinical pathway of care. After the intervention, 148 participants completed the Shared Decision-Making Questionnaire and the Decision Quality Measurement, and 29 participants were interviewed. Concordance between knowledge, decision and preference was calculated to measure decision quality. Interview transcripts were analysed qualitatively. RESULTS: The participants obtained a mean score for shared decision-making of 86 out of 100. There was no significant difference between those choosing home- or hospital-based treatment (97 versus 83; p = 0.627). The participants obtained a knowledge score of 82% and a readiness score of 86%. Those choosing home-based treatment had higher knowledge score than those choosing hospital-based treatment (84% versus 75%; p = 0.006) but no significant difference on the readiness score (87% versus 84%; p = 0.908). Considering the chosen option and the knowledge score, 83% of the participants achieved a high-quality decision. No significant difference was found for decision quality between those choosing home- or hospital-based treatment (83% versus 83%; p = 0.935). Interview data informed the interpretation of these results. CONCLUSIONS: Although there was no control group, over 80% of participants exposed to the intervention and responded to the surveys experienced shared decision-making and reached a high-quality decision. Both participants who chose home- and hospital-based treatment experienced the intervention as shared decision-making and made a high-quality decision. Qualitative findings supported the quantitative results. TRIAL REGISTRATION: The full trial protocol is available at ClinicalTrials. Gov ( NCT03868800 ). The study has been registered retrospectively.

Patient ambassador support: Experiences of the mentorship between newly diagnosed patients with acute leukaemia and their patient ambassadors.

OBJECTIVE: The study explores how newly diagnosed patients with acute leukaemia and their patient ambassadors experience the mentorship during the patient ambassador support programme. METHODS: Explorative semi-structured individual interviews (n = 28) were carried out in patients with acute leukaemia (n = 15) and their patient ambassadors (n = 13). Interpretive description was the methodological framework used for the thematic analysis of the qualitative interview data. RESULTS: Identified themes were as follows: (a) exchanging life experiences (subthemes: individualised support and a meaningful return); (b) existential cohesion; (c) interreflection; and (d) terms and conditions (subtheme: break in journey). Patients experienced a feeling of being understood, the cohesion leading to hope and a feeling of being able to cope with their situation. Patient ambassadors experienced a sense of meaningfulness and gratitude for life. CONCLUSIONS: Patients and patient ambassadors experienced benefits from the individualised support. Their shared experiences created a connection and mutual mirroring, which led to a sense of hope and gratitude for life. Initiatives that introduce peer-to-peer support in newly diagnosed patients with acute leukaemia as part of treatment and in daily clinical practice are crucial. Future studies should further examine the feasibility of peer-to-peer support interventions along the trajectory of acute leukaemia.

How do geneticists and prospective parents interpret and negotiate an uncertain prenatal genetic result? An analysis of clinical interactions.

Variants of unknown significance (VUS) and susceptibility loci (SL) are a challenge in prenatal genetic counseling. The aim of this study was to explore how such uncertain genetic results are communicated, negotiated, and made meaningful by genetics healthcare providers and couples in the actual clinical setting where results are delivered. The study was based on an anthropological approach and the material consisted of observations and audio-recordings from 16 purposively sampled genetic counseling sessions where prenatal testing had identified an inherited or de novo VUS or SL result. Field notes and transcripts from audio-recordings were analyzed using thematic analysis. The analysis identified a number of specific interpretations and strategies that clinical geneticists and couples collectively used for dealing with the ambiguity of the result. Thus, the analysis resulted in a total of three themes, each with 3-4 subthemes. The theme 'Setting the scene' describes the three-stage structure of the consultation. The theme 'Dealing with uncertainty' includes 'normalizing strategies' that emphasized the inherent uncertainty in human life in general and 'contextualizing strategies' that placed the result in relation to the surrounding society, where technological developments lead to new and unforeseen challenges. The theme 'Regaining control' includes interpretations that made the knowledge useful by focusing on the value of being prepared for potential, future challenges. Other strategies were to book an extra scan-to reconfirm fetal structural health and to reconnect to the pregnancy. Finally, inquiring about the sex was clearly a way for the couple to signal their investment in the pregnancy. Based on the analysis, we propose that these interpretations served to transform and reduce ambiguity through a process of reconfiguring the biomedical information into knowledge that resonated with the couples' lifeworlds. In this process, both geneticist and couples drew on wider social and moral concerns about uncertainty and responsibility.

Feeling safe with patient-controlled admissions: A grounded theory study of the mental health patients' experiences.

AIM: To develop a grounded theory of the patients' experiences with patient-controlled admission. BACKGROUND: Research indicates a potential for involving patients in mental health care, but there is a need to develop and investigate new approaches in health services. Patient-controlled admission is an option for patients with severe mental disorders to refer themselves for a brief hospital admission when needed and thus avoid the usual admission procedure. DESIGN: Classic grounded theory with generation of a theory based on the constant comparative method for data collection and analysis. METHODS: Field observations and interviews with 26 mental health patients. The COREQ checklist was followed. RESULTS: We found that patient-controlled admission induced safety by providing faster access to help and thus preventing further deterioration of symptoms. Being self-determined, achieving calmness and receiving care with support and guidance from professionals during admission contributed to the sense of safety. The familiarity with the mental health professionals in their related units supported the patients in managing their situation. On the other hand, feelings of being overlooked by the professionals and experiencing uncertainty could undermine patients' feeling of safety. CONCLUSIONS: We demonstrate that safety is a focal point for patients when receiving help and support in mental health care. Patient-controlled admission can induce a feeling of safety both at the hospital and at home. Patients' self-determination is strengthened, and brief admissions give them an opportunity to handle what they are currently struggling with. Professionals can support patients in this, but their actions can also reduce patients' feeling of safety. RELEVANCE TO CLINICAL PRACTICE: Patient involvement can be introduced in psychiatry, and even severely ill patients seem to be able to assess their own condition. Feasibility may, however, be associated with the attitude and behaviour of the professionals in clinical practice.

Surgical breast cancer patient pathway: Experiences of patients and relatives and their unmet needs.

BACKGROUND AND AIM: Breast cancer is the most common cancer disease in women worldwide. In Denmark, the law prescribes cancer patient pathways (CPPs) in general and thus also for breast cancer. Although results from patient satisfaction surveys show overall satisfaction with the pathway, a call for improvement has been voiced for some areas. The aim of this study was to explore patients' and relatives' experiences with the surgical breast CPP and to identify any unmet needs. METHOD: This study was based on focus groups with patients who had surgery for breast cancer, and their relatives. The settings were two Danish surgical breast cancer clinics. FINDINGS: Overall, patients and relatives found the structure of the surgical breast CPP satisfactory. The time in the surgical department was short, and most patients found it difficult to cope with the situation. Empathy and a supportive relationship between patients, relatives and health-care professionals were of great importance. Five key points were identified in which some of the participants had unmet needs. Suggestions for change were related to information, communication, choice of treatment, flexibility in the pathway and easy access to the clinic after surgery. CONCLUSION: Although patients and relatives found the CPP for breast cancer satisfactory and well planned, suggestions for change were made relating to unmet needs with respect to five key points in the pathway. Implementing findings from this study in clinical practice requires co-operation between health-care professionals and support from the leaders of the organization.

Patient involvement in comprehensive, complex cancer surgery: Perspectives of patients, relatives and health professionals.

We investigated the perspectives of patients, relatives and health professionals on the drivers and barriers to patient involvement (PI) in the treatment of peritoneal carcinomatosis with cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC). During 2016-2017, individual and focus group interviews were conducted with purposively selected participants during CRS and HIPEC, supplemented by field observations. This material was analysed using meaning condensation (Kvale). Fifteen patients, eight relatives and nine health professionals participated in 31 individual and two focus group interviews, supplemented by 37 observations. The findings were structured into themes concerning treatment decisions, organisation of pathways, knowledge of the patient and life during treatment. Deciding to treat was determined not only by preoperative biomedical information, personal preferences but also findings during surgery. This circumstance put the patients under mental pressure and affected their ability to process the offered information. They furthermore perceived the pathway as complex and occasionally unclear, leading them to attempt to coordinate transitions themselves. The study has highlighted barriers to, rather than drivers of, PI. To promote PI during comprehensive complex cancer surgery, we suggest that patients and relatives are offered patient-centred care, such as support in posing questions, overview of their treatment pathway and coherent transitions.

Nurse-led Motivational Telephone Follow-up After Same-day Percutaneous Coronary Intervention Reduces Readmission and Contacts to General Practice.

BACKGROUND: Same-day discharge of patients undergoing percutaneous coronary intervention (PCI) may challenge preparation of patients for discharge. OBJECTIVE: The objective of this study was to investigate whether nurse-led telephone follow-up influenced patients' self-management post-PCI. METHODS: We performed a randomized study with an allocation rate of 1:1. A standardized nurse-led motivational telephone consultation was conducted between 2 and 5 days after PCI to support adherence to medical therapy, follow-up activities, emotional well-being, and healthy lifestyle. The control group received usual care and discharge procedures. Primary outcome was adherence to use of P2Y12 inhibitor (clopidogrel or ticagrelor) therapy at 30 days of follow-up. RESULTS: We consecutively included 294 elective patients (83%) undergoing PCI and with planned same-day discharge. Adherence to P2Y12 inhibitors was not influenced by the intervention (intervention vs control, 95% vs 93%, respectively; P = .627). However, the proportion of patients readmitted (8% vs 16%, P = .048), as well as self-initiated contacts to general practitioners (29% vs 42%, P = .020), was lower in the intervention group compared with the control group. Patients in the intervention group were more likely to know how to manage symptoms of angina pectoris (90% vs 80%, P = .015), and a higher proportion of patients in the intervention group commenced healthy physical activities (53% vs 41%, P = .043). CONCLUSION: Nurse-led motivational telephone follow-up did not influence adherence to antiplatelet medical therapy after PCI. However, the intervention positively influenced self-management of angina pectoris and reduced hospital readmissions and self-initiated contacts to general practitioners and hospitals.

Development of a Cancer Self-management Education Programme for Women with Breast Cancer at the End of Primary Treatment.

Breast cancer survivors have specific healthcare needs. As a result of their disease and treatment, they have to adapt to different physical and psychosocial late effects. Unfortunately, several studies have documented insufficiency in the survivorship healthcare system. The aim of this paper was to describe the process of development and testing of a novel Cancer Self-management Education programme (CSME programme) to improve patient-reported self-management and self-efficacy for patients with breast cancer who were at the end of primary treatment. The development of the educational programme was inspired by the Plan-Do-Study-Act (PDSA) circle and based on person-centred principles. It was conducted at a Danish university hospital. Nine oncology healthcare providers, two external experts in patient education and five patients were involved in the development and testing of the education programme. Implementation of dialogue-based tools was used as an educational learning instrument in the SCME programme. The PDSA approach to the development of the CSME programme resulted in a person-centred programme that could improve self-management and self-efficacy in the survivorship phase of patients with breast cancer.

Clinicians' perspective on an app for patient self-monitoring in eating disorder treatment.

OBJECTIVE: The Recovery Record smartphone app is a self-monitoring tool for individuals recovering from eating disorders. Oppositely to traditional pen-and-paper meal diaries, the app allows for in-app patient-clinician linkage enabling clinicians to access patient app data anytime. The aim of our study was to explore the interdisciplinary clinical perspective on Recovery Record and its impact on treatment. METHOD: Thirty-one clinicians from a Danish eating disorder treatment facility participated in field studies and 23 of these in interviews. Data were generated and analyzed concurrently applying the inductive methodology of Interpretive Description. RESULTS: We found two overarching themes: "Access to app data between treatment sessions", and "The patient-clinician relationship". Sub-themes associated with the former were "Online obligations" in relation to the added workload of continuously monitoring patient app data, and "Prepared or prejudiced" relating to advantages and disadvantages of using patient app data as preparation for treatment sessions. Sub-themes pertaining to the latter were "Expectation discrepancy" in relation to patients' and clinicians' divergent expectations for app usage, and "Pacified patients" regarding the clinicians' experience that the app potentially compromised the patient initiative in treatment sessions. DISCUSSION: Recovery Record induced new and affected pre-existing treatment and work conditions for clinicians. Clinicians were preoccupied with challenges associated with the app, for example, an added work load and potential harm to the patient-clinician collaboration. Thus, prior to adopting the app, we encourage clinicians and managements to discuss the objectives, advantages and disadvantages of adopting the app, and outline specific guidelines for patient and clinician app usage.

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.