An insight into healthcare professionals' perspectives on discussing implantable cardioverter defibrillator deactivation.

BACKGROUND: International studies have examined patients' views concerning the discussion of deactivating an implantable cardioverter defibrillator (ICD). Findings reported that many patients were either not informed about the subject or were informed late in their illness trajectory. AIM: To explore healthcare professionals' perspectives on discussing ICD deactivation and identify priorities for clinical practice and future research. METHODS: Eleven interviews were conducted, involving heart failure nurses, physicians, and an allied professional. All were responsible for the care of patients with an ICD, from the United Kingdom or Sweden. A semi-structured guide was used. All interviews were audio-recorded, transcribed, translated (as applicable) and analysed independently by experienced researchers, using framework analysis. Findings were presented, along with published work at a stakeholder meeting, and a consensus agreement was reached on priorities for clinical practice and future research. FINDINGS: Four themes emerged from the exploratory interviews. Healthcare professionals described the discussion about deactivation as challenging, requiring compassion and involvement of family members. They agreed that the topic should be initiated prior to, or shortly after device implantation. This was reflected in the priorities to improve communication, through the increased availability and implementation of prompts and tools, as well as the provision of tailored information to patients and family members. Stakeholders recognised the future potential of digital technology in device education. CONCLUSIONS: Discussing deactivation remains challenging. Healthcare professionals recognised the need to initiate the discussion early, with compassion and involvement of family members. Priorities were agreed by stakeholders, which require clinical implementation and further research.

Family presence during in-hospital cardiopulmonary resuscitation: effects of an educational online intervention on self-confidence and attitudes of healthcare professionals.

AIMS: Guidelines support family-witnessed resuscitation (FWR) during cardiopulmonary resuscitation in hospital if deemed to be safe, yet barriers amongst healthcare professionals (HCPs) still exist. This study aimed to evaluate the effects of an educational online video intervention on nurses' and physicians' attitudes towards in-hospital FWR and their self-confidence in managing such situations. METHODS AND RESULTS: A pre- and post-test quasi-experimental study was conducted October 2022 to March 2023 at six Swedish hospitals involving the departments of emergency care, medicine, and surgery. The 10 min educational video intervention was based on previous research covering the prevalence and outcome of FWR, attitudes of HCP, patient and family experiences, and practical and ethical guidelines about FWR.In total, 193 accepted participation, whereof 91 answered the post-test survey (47.2%) with complete data available for 78 and 61 participants for self-confidence and attitudes, respectively. The self-confidence total mean scores increased from 3.83 to 4.02 (P < 0.001) as did the total mean scores for attitudes towards FWR (3.38 to 3.62, P < 0.001). The majority (71.0%) had positive views of FWR at baseline and had experiences of in-hospital FWR (58.0%). Self-confidence was highest amongst participants for the delivery of chest compressions (91.2%), defibrillation (88.6%), and drug administration (83.3%) during FWR. Self-confidence was lowest (58.1%) for encouraging and attending to the family during resuscitation. CONCLUSION: This study suggests that a short online educational video can be an effective way to improve HCP's self-confidence and attitudes towards the inclusion of family members during resuscitation and can support HCP in making informed decisions about FWR.

Correction: Expectations of Tele-Yoga in Persons With Long-Term Illness: Qualitative Content Analysis.

[This corrects the article DOI: 10.2196/36808.].

Expectations of Tele-Yoga in Persons With Long-Term Illness: Qualitative Content Analysis.

BACKGROUND: Yoga is a mind-body exercise that has demonstrated its feasibility and safety even for individuals with severe long-term illness. Engaging in yoga has the potential to yield positive effects on both physical and mental well-being. Tele-yoga is a novel approach to rehabilitation in which participants practice group yoga with a live-streamed yoga instructor digitally via a tablet. This is especially beneficial for individuals who may find it difficult to leave their homes to participate in an exercise session. As part of our ongoing evaluation of the tele-yoga intervention in individuals with long-term illness, we have undertaken an exploration of participants' expectations regarding yoga in general and tele-yoga specifically. Understanding these expectations is crucial, as they can significantly impact their satisfaction with treatment and care and influence overall intervention outcomes. OBJECTIVE: This study aims to explore the expectations of tele-yoga among individuals with long-term illness before starting a tele-yoga intervention. METHODS: The study employed an inductive qualitative design and is part of a process evaluation within an ongoing randomized controlled trial. A total of 89 participants were interviewed before the start of the tele-yoga intervention. The interview guide encompassed questions about their general perceptions of yoga and the specific expectations they held for the upcoming tele-yoga sessions. The interviews were transcribed and analyzed using inductive qualitative content analysis. RESULTS: Participants expressed their expectations for tele-yoga, focusing on the anticipated improvements in physical function and overall health. These expectations included hopes for reduced respiratory issues; relief from discomfort, aches, and pains; as well as increased physical flexibility, coordination, and overall well-being. Besides, they expected to achieve improved psychological well-being and performance; to acquire strategies to manage stress, anger, and anxiety; and to have their motivational drive strengthened and influence other activities. Participants described tele-yoga as a new and exciting technical solution that would facilitate the delivery of yoga. A few participants remained a little hesitant toward the use of technology, with some expectations based on previous experiences. When asked about expectations, some had no idea about what to expect. Participants also had varying perspectives on yoga, with some finding it mysterious and difficult to understand. Participants expressed thoughts that they found the idea of tele-yoga taking place in groups exciting and enjoyable. They also had expectations that being part of a group would provide opportunities for mutual inspiration and encouragement among the group members. CONCLUSIONS: Expectations before an intervention can provide valuable insights into understanding the factors influencing adherence to tele-yoga and its outcomes. Our findings provide a wide range of expectations for tele-yoga, spanning both physical and mental aspects. Moreover, the technology's potential to facilitate yoga delivery and the supportive nature of digital group interactions were evident from the results. TRIAL REGISTRATION: ClinicalTrials.gov NCT03703609; https://clinicaltrials.gov/ct2/show/NCT03703609.

The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper.

AIM: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure. DESIGN: A co-design process built on core concepts and ideas embedded in co-design methodology. DATA SOURCES: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme. OUTCOMES: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal. CONCLUSION: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process. RELEVANCE TO CLINICAL PRACTICE: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel. REPORTING METHODS: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Both informal carers and content creators were involved in developing the support programme.

Experiences of family-witnessed cardiopulmonary resuscitation in hospital and its impact on life: An interview study with cardiac arrest survivors and their family members.

AIM: To explore experiences of cardiac arrest in-hospital and the impact on life for the patient who suffered the arrest and the family member who witnessed the resuscitation. BACKGROUND: Guidelines advocate that the family should be offered the option to be present during resuscitation, but little is known about family-witnessed cardiopulmonary resuscitation in hospital and the impact on the patient and their family. DESIGN: A qualitative design consisting of joint in-depth interviews with patients and family members. METHODS: Family interviews were conducted with seven patients and their eight corresponding family members (aged 19-85 years) 4-10 months after a family-witnessed in-hospital cardiac arrest. Data were analysed using interpretative phenomenological analysis. The study followed the guidelines outlined in the consolidated criteria for reporting qualitative research (COREQ) checklist. RESULTS: The participants felt insignificant and abandoned following the in-hospital cardiac arrest. Surviving patients and their close family members felt excluded, alone and abandoned throughout the care process; relationships, emotions and daily life were affected and gave rise to existential distress. Three themes and eight subordinate themes were identified: (1) the intrusion of death-powerless in the face of the fragility of life, highlights what it is like to suffer a cardiac arrest and to cope with an immediate threat to life; (2) being totally exposed-feeling vulnerable in the care relationship, describes how a lack of care from healthcare staff damaged trust; (3) learning to live again-making sense of an existential threat, pertaining to the family's reactions to a difficult event that impacts relationships but also leads to a greater appreciation of life and a positive view of the future. CONCLUSION: Surviving and witnessing a cardiac arrest in-hospital is a critical event for everyone involved. Patients and family members are vulnerable in this situation and need to be seen and heard, both in the hospital and after hospital discharge. Consequently, healthcare staff need to show compassion and attend to the needs of the family, which involves continually assessing how family members are coping during the process, and providing support and information during and after resuscitation. RELEVANCE TO CLINICAL PRACTICE: It is important to provide support to family members who witness the resuscitation of a loved one in-hospital. Structured follow-up care is crucial for cardiac arrest survivors and their families. To promote person-centred care, nurses need interprofessional training on how to support family members during resuscitation, and follow-up care focusing on providing resources for multiple challenges faced by survivors (emotional, cognitive, physical) and families (emotional) is needed. PATIENT OR PUBLIC CONTRIBUTION: In-hospital cardiac arrest patients and family members were involved when designing the study.

Healthcare professionals' experiences of providing care for patients with enterocutaneous fistula in hospital and in homecare: A qualitative study.

BACKGROUND: Enterocutaneous fistula is a rare but complex and serious condition that is both physically and psychologically demanding for the person affected. Infection, fistula dressing problems, electrolyte and fluid imbalance and malnutrition render the individual in need of long periods of in-hospital care and homecare. This place great demands on patients, families, and healthcare professionals. More research is needed to bridge the gap between hospital and home-based healthcare services. AIM: To explore healthcare professionals' experiences of providing care for patients with enterocutaneous fistula in hospital and in homecare. MATERIAL AND METHODS: A qualitative descriptive study design based on five focus group interviews involving 20 healthcare professionals. Data was analysed using content analysis. RESULTS: Three categories with seven corresponding subcategories were developed; 1) Providing care for patients with enterocutaneous fistula in the hospital and at home was complex and time and resource consuming. Participants were struggling with practical issues and lacked disease-specific knowledge and skills; 2) Caring requires an integrated approach but it was challenging to work interprofessionally and cope with barriers in collaboration between providers; 3) Building long lasting relationships with patients and their families was fundamental to the caring process. Participants needed to hide their own feelings related to smell and appearance of the fistula as well as frustration when the fistula dressing did not hold without leaking. The healthcare professionals expressed that the involvement of the patient and their close family was important when proving care, likewise, to have a great understanding of the patients' suffering. DISCUSSION: The care of patients with enterocutaneous fistula is complex and means engagement for long periods, both in hospital and in home-based healthcare. Regular team meetings of the multidisciplinary team, careful planning before discharge and providing person-centred care can facilitate the care process.

Symptoms of Acute Myocardial Infarction as Described in Calls to Tele-Nurses and in Questionnaires: A Mixed-Methods Study.

BACKGROUND: Patient-reported symptoms of acute myocardial infarction (MI) may be affected by recall bias depending on when and where symptoms are assessed. AIM: The aim of this study was to gain an understanding of patients' symptom description in more detail before and within 24 hours after a confirmed MI diagnosis. METHODS: A convergent parallel mixed-methods design was used to examine symptoms described in calls between the tele-nurse and the patient compared with symptoms selected by the patient from a questionnaire less than 24 hours after hospital admission. Quantitative and qualitative data were analyzed separately and then merged into a final interpretation. RESULTS: Thirty patients (median age, 67.5 years; 20 men) were included. Chest pain was the most commonly reported symptom in questionnaires (24/30). Likewise, in 19 of 30 calls, chest pain was the first complaint mentioned, usually described together with the symptom onset. Expressions used to describe symptom quality were pain, pressure, discomfort, ache, cramp, tension, and soreness. Associated symptoms commonly described were pain or numbness in the arms, cold sweat, dyspnea, weakness, and nausea. Bodily sensations, such as feeling unwell or weak, were also described. Fear and tiredness were described in calls significantly less often than reported in questionnaires ( P = .01 and P = .02), whereas "other" symptoms were more often mentioned in calls compared with answers given in the questionnaire ( P = .02). Some symptoms expressed in the calls were not listed in the questionnaire, which expands the understanding of acute MI symptoms. The results showed no major inconsistencies between datasets. CONCLUSION: Patients' MI symptom descriptions in tele-calls and those reported in questionnaires after diagnosis are comparable and convergent.

Putting life on hold: A longitudinal phenomenological-hermeneutic study of living with [or close to someone with] an enterocutaneous fistula before and after reconstructive surgery.

AIMS AND OBJECTIVES: Illuminate meanings of living with [or close to someone with] an enterocutaneous fistula before and after reconstructive surgery. BACKGROUND: Enterocutaneous fistula is a serious condition affecting the well-being and social life of both patients and families, sometimes for several years. DESIGN: A longitudinal qualitative design. METHODS: Patients and families (n = 14) were followed with dyadic interviews at three occasions, conducted 2017-2020. The interviews were analysed with a phenomenological-hermeneutic approach. COREQ guidelines were followed. RESULT: Living with an enterocutaneous fistula was explained as life being put on hold, while living in a bubble for an uncertain time. This bubble meant facing an unpredictable and restricted life where the dyads were forced to take control over the situation despite being vulnerable inside, striving to resume normality. The patients dealt with never-ending symptoms such as leakage from the fistula, pain and fatigue, while the family supported with practical matters and just being close. Dependency on intravenous fluids resulted in social isolation, which caused mode swings and depressiveness. In this situation, healthcare professionals often became a substitute for other interactions, but the lack of understanding about the dyads' situation, affected their trust in the healthcare. Despite all, they still had belief in the future, the patients having higher expectations than the family. CONCLUSIONS: Living with an enterocutaneous fistula meant a daily life struggling with many limitations. This implies that the transition was associated with difficulties and the dyads strived to accept their situation. RELEVANCE TO CLINICAL PRACTICE: The findings indicate that these patients must be cared for with a multidisciplinary approach. A person-centred health plan could impact on the dyads' feeling of control and thereby making them less dependent on healthcare. Every patient should have their own contact nurse and be offered psychological support. NO PATIENT OR PUBLIC CONTRIBUTION: Not applicable due to the current method.

Factors associated with patient decision time in ST-segment elevation myocardial infarction, in early and late responders-an observational cross-sectional survey study.

AIMS: A short time span from symptom onset to reperfusion is imperative in ST-segment elevation myocardial infarction (STEMI). The aim of this study was to determine factors associated with patient decision time for seeking care in STEMI, particularly how symptoms were experienced and affected patient response. METHODS AND RESULTS: A multicentre cross-sectional self-report survey study was completed at five Swedish hospitals representing geographic diversity. The 521 patients were divided into three groups based on their time to respond to symptoms: early (<20 min), intermediate (20-90 min), and late responders (>90 min). Only one out of five patients both responded early and called an ambulance within 20 min. Believing symptoms were cardiac in origin [odds ratio (OR) 2.60], male sex (OR 2.40), left anterior descending artery as culprit artery (OR 1.77), and bystanders calling an ambulance (OR 4.32) were factors associated with early response and correct action. Associated symptoms such as dyspnoea (OR 1.67) and weakness (OR 1.65) were associated with an early action (<20 min), while chest pain was not independently associated with response time. Cold sweat (OR 0.61) prevented late care-seeking behaviour as did a high symptom burden (OR 0.86). CONCLUSION: Misinterpretation of symptoms delays correct care-seeking behaviour because patient expectations may not be aligned with the experience when stricken by Myocardial infarction. Therefore, it is imperative to continuously enhance public awareness in correct symptom recognition and appropriate care-seeking behaviour and to make efforts to educate individuals at risk for STEMI as well as their next of kin.

Device Adjustment and Recovery in Patients With Heart Failure Undergoing a Cardiac Resynchronization Therapy Implantation: A Longitudinal Study.

BACKGROUND: Little is known about risk factors for poor adjustment to the device after cardiac resynchronization therapy (CRT) implantation in patients with heart failure. PURPOSE: The aim of this study was to explore device adjustment and the postoperative recovery of patients with heart failure undergoing elective CRT device implantation. METHODS: In this prospective multicenter longitudinal study, data were collected before implantation and after 2 weeks, 6 months, and 1 year, using validated self-reported instruments and investigator-designed, CRT-specific questions. RESULTS: A total of 133 patients, 79% male, with a mean age of 70 ± 10 years, were included. Patients adjusted to the device over time (P < .001), but 20% of patients had difficulties after 2 weeks, and 11% had difficulties at the 1-year follow-up. Fatigue was the most common health problem before surgery (87%), which was reduced to 65% after 1 year, P < .001. Patients' recovery improved over time (P < .001). Device-specific problems with hiccups (7% vs 14%), pulsation around the device (29% vs 24%), tachycardia (28% vs 29%), appearance of the scar (21% vs 17%), and the device bulging out (65% vs 61%) remained unchanged over time, whereas stiffness in the shoulder (64% vs 28%, P < .001) and wound healing (9% vs 2%, P < .05) improved. CONCLUSIONS: Most patients with heart failure recover and adjust early after their CRT implantation and improve even more during follow-up. However, recovery and adjustment are problematic for some patients, and many experience bodily discomforts because of the device. Early screening for poor adjustment and psychological distress can lead to appropriate interventions and timely referrals. This is important in the era of remote monitoring with less face-to-face contact.

Tele-Yoga in Long Term Illness-Protocol for a Randomised Controlled Trial Including a Process Evaluation and Results from a Pilot Study.

BACKGROUND: For people with long-term illness, debilitated by severe symptoms, it can be difficult to attend regular yoga classes. We have therefore developed a tele-health format of yoga that can be delivered in the home. The tele-yoga was co-designed with members of a patient-organisation, yoga-instructor, and IT-technician. It includes live-streamed group-yoga sessions twice a week and an app with instructions on how to self-perform yoga. AIM: To describe a study protocol for a randomised controlled trial (RCT) including a process evaluation and report on a pilot study evaluating method- and intervention-related components including feasibility, safety, and efficacy. METHODS: Ten participants with heart failure aged between 41-76 years were randomised to tele-yoga (n = 5) or to the control group (n = 5). In the pilot study recruitment, enrolment, randomisation, and data collection of all outcomes including primary, secondary and process evaluation measures were tested according to the study protocol. Fidelity, adherence and acceptability to the tele-yoga group training and app use was determined. Safety was assessed by adverse events. RESULTS: The pilot revealed that the methodological aspect of the protocol worked sufficiently in all aspects except for missing data in the physical test of two participants and one participant in the control-group that dropped out of the study at three months follow-up. The tele-yoga training did not lead to any adverse events or injuries, adherence of tele-yoga was sufficient according to preset limits. The tele-yoga intervention also showed some favourable trends of improvements in the composite-end point compared to the active control group. However, since data only was presented descriptively due to the small sample size, the impact of these trends should be interpreted carefully. CONCLUSION: Our pilot study showed promising results in feasibility, safety, and acceptability of the tele-yoga intervention. Some changes in the protocol have been made to decrease the risk of missing data in the measures of physical function and in the full-scale RCT now ongoing the results of the sample size calculation for 300 participants have included the estimated level of drop outs and missing data.

In-hospital family-witnessed resuscitation with a focus on the prevalence, processes, and outcomes of resuscitation: A retrospective observational cohort study.

AIM: International and national guidelines support in-hospital, family-witnessed resuscitation, provided that patients are not negatively affected. Empirical evidence regarding whether family presence interferes with resuscitation procedures is still scarce. The aim was to describe the prevalence and processes of family-witnessed resuscitation in hospitalised adult patients, and to investigate associations between family-witnessed resuscitation and the outcomes of resuscitation. METHODS: Nationwide observational cohort study based on data from the Swedish Registry of Cardiopulmonary Resuscitation. RESULTS: In all, 3257 patients with sudden, in-hospital cardiac arrests were included. Of those, 395 had family on site (12%), of whom 186 (6%) remained at the scene. It was more common to offer family the option to stay during resuscitation if the cardiac arrest occurred in emergency departments, intensive-care units or cardiac-care units, compared to hospital wards (44% vs. 26%, p < 0.001). It was also more common for a staff member to be assigned to take care of family in acute settings (68% vs. 56%, p = 0.017). Mean time from cardiac arrest to termination of resuscitation was longer in the presence of family (20.67 min vs. 17.49 min, p = 0.020), also when controlling for different patient and contextual covariates in a regression model (Stand(ß) 0.039, p = 0.027). No differences were found between family-witnessed and non-family-witnessed resuscitation in survival immediately after resuscitation (57% vs. 53%, p = 0.291) or after 30 days (35% vs. 29%, p = 0.086). CONCLUSIONS: In-hospital, family-witnessed resuscitation is uncommon, but the processes and outcomes do not seem to be negatively affected, suggesting that staff should routinely invite family to witness resuscitation.

Patients' and Nurses' Experiences and Perceptions of Remote Monitoring of Implantable Cardiac Defibrillators in Heart Failure: Cross-Sectional, Descriptive, Mixed Methods Study.

BACKGROUND: The new generation of implantable cardioverter-defibrillators (ICDs) supports wireless technology, which enables remote patient monitoring (RPM) of the device. In Sweden, it is mainly registered nurses with advanced education and training in ICD devices who handle the arrhythmias and technical issues of the remote transmissions. Previous studies have largely focused on the perceptions of physicians, and it has not been explored how the patients' and nurses' experiences of RPM correspond to each other. OBJECTIVE: Our objective is to describe, explore, and compare the experiences and perceptions, concerning RPM of ICD, of patients with heart failure (HF) and nurses performing ICD follow-up. METHODS: This study has a cross-sectional, descriptive, mixed methods design. All patients with HF and an ICD with RPM from one region in Sweden, who had transitioned from office-based visits to implementing RPM, and ICD nurses from all ICD clinics in Sweden were invited to complete a purpose-designed, 8-item questionnaire to assess experiences of RPM. The questionnaire started with a neutral question: "What are your experiences of RPM in general?" This was followed by one positive subscale with three questions (score range 3-12), with higher scores reflecting more positive experiences, and one negative subscale with three questions (score range 3-12), with lower scores reflecting more negative experiences. One open-ended question was analyzed with qualitative content analysis. RESULTS: The sample consisted of 175 patients (response rate 98.9%) and 30 ICD nurses (response rate 60%). The majority of patients (154/175, 88.0%) and nurses (23/30, 77%) experienced RPM as very good; however, the nurses noted more downsides than did the patients. The mean scores of the negative experiences subscale were 11.5 (SD 1.1) for the patients and 10.7 (SD 0.9) for the nurses (P=.08). The mean scores of the positive experiences subscale were 11.1 (SD 1.6) for the patients and 8.5 (SD 1.9) for the nurses (P=.04). A total of 11 out of 175 patients (6.3%) were worried or anxious about what the RPM entailed, while 15 out of 30 nurses (50%) felt distressed by the responsibility that accompanied their work with RPM (P=.04). Patients found that RPM increased their own (173/175, 98.9%) and their relatives' (169/175, 96.6%) security, and all nurses (30/30, 100%) answered that they found RPM to be necessary from a safety perspective. Most patients found it to be an advantage with fewer office-based visits. Nurses found it difficult to handle different systems with different platforms, especially for smaller clinics with few patients. Another difficulty was to set the correct number of alarms for the individual patient. This caused a high number of transmissions and a risk to miss important information. CONCLUSIONS: Both patients and nurses found that RPM increased assurance, reliance, and safety. Few patients were anxious about what the RPM entailed, while about half of the nurses felt distressed by the responsibility that accompanied their work with RPM. To increase nurses' sense of security, it seems important to adjust organizational routines and reimbursement systems and to balance the workload.

Patients are expecting to learn more: A longitudinal study of patients with heart failure undergoing device implantation.

OBJECTIVE: To explore the educational expectations and experiences of patients with heart failure in relation to device implantation. METHODS: In this longitudinal study, patients at six Swedish and Icelandic hospitals answered instruments about their knowledge expectations, before the device implantation, and about the knowledge they had received at two weeks, six months and 12 months after the procedure. Predictors for fulfillment of knowledge expectations were assessed with linear mixed model analysis. RESULTS: Patients (N = 133, mean age 69.8 (±9.7) years, 80 % men) had high knowledge expectations, which for 83 % of them were unfulfilled. Predictors for fulfillment of knowledge expectations were access to knowledge from healthcare professionals (ß 0.74, 95 % CI: 0.42-1.10), educational level (ß -0.30, 95 % CI: -0.52 to -0.07) and knowledge expectations (ß -1.03, 95 % CI: -1.30 to -0.80). Healthcare professionals were the main information source (89 %), 74 % of patients received written information, and 19 % had used the Internet. CONCLUSIONS: Patients receive less knowledge than they expect, and individual factors and communication with healthcare professionals are related to their experience. Face-to-face is the most common method of delivering education. PRACTICE IMPLICATIONS: Healthcare professionals should assess patients' expectations for information and consider implementing more diversity in their educational practices.