IntroductionPatient reported health status, which includes symptom burden, functional status and quality of life, is an important measure of health. Differences in health status between diagnostic groups within cardiology have only been sparsely investigated. These outcomes may predict morbidity, mortality, labour market affiliation and healthcare utilisation in various diagnostic groups. A national survey aiming to include all cardiac diagnostic groups from a total Heart Centre population has been designed as the DenHeart survey.Methods and analysisDenHeart is designed as a cross-sectional survey with a register-based follow-up. All diagnostic groups at the five national Heart Centres are included during 1 year (15 April 2013 to 15 April 2014) and asked to fill out a questionnaire at hospital discharge. The total eligible population, both responders and non-responders, will be followed in national registers. The following instruments are used: SF-12, Hospital Anxiety and Depression Scale, EQ-5D, Brief Illness Perception Questionnaire (B-IPQ), HeartQoL and Edmonton Symptom Assessment Scale. The following variables are collected from national registers: action diagnosis, procedures, comorbidity, length of hospital stay, type of hospitalisation, visits to general practitioners and other agents in primary healthcare, dispensed prescription medication, vital status and cause of death. Labour market affiliation, sick leave, early retirement pension, educational degree and income will be collected from registers. Frequency distributions and multiple logistic regression analyses will be used to describe and assess differences in patient reported outcomes at hospital discharge between diagnostic groups and in-hospital predicting factors. Cox proportional hazards regression models with age as the time scale will be used to investigate associations between patient reported outcomes at baseline and morbidity/mortality, labour market affiliation and healthcare utilisation after 1 year.Ethics and disseminationThe study complies with the Declaration of Helsinki. The study has been approved by the Danish Data Protection Agency: 2007-58-0015/30-0937 and registered at ClinicalTrials.gov (NCT01926145). Study findings will be disseminated widely through peer reviewed publications and conference presentations.

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ObjectivesTo identify the learning needs of patients with heart failure between outpatients follow-up visits from their perspective and to ascertain what they emphasize as being important in the design of an educational website for them. MethodsWe conducted a two-step qualitative study at Aarhus University Hospital, Denmark. Twenty patients with heart failure participated either in focus group interviews, diary writing, or video-recorded design sessions. Data on learning needs were collected in step 1 and analyses, therefore, helped develop the preliminary prototypes of a website. In step 2, patients worked on the prototypes in video-recorded design sessions, employing a think-aloud method. The interviews were transcribed and a content analysis was performed on the text and video data. ResultsPatients’ learning needs were multifaceted, driven by anxiety, arising from, and often influenced by, such daily situations and contexts as the medical condition, medication, challenges in daily life, and where to get support and how to manage their self-care. They emphasized different ways of adapting the design to the patient group to enable interaction with peers and professionals and specific interface issues. ConclusionsThis study provided insights into the different learning needs of patients with heart failure, how managing daily situations is the starting point for these needs and how emotions play a part in patients’ learning. Moreover, it showed how patient co-designers proved to be useful for understanding how to design a website that supports patients’ learning: insights, which may become important in designing online learning tools for patients.

The elderly ICD recipients tended not to be aware of the option of declining replacement of their ICD. They tended to expect to have their ICD replaced and not to be involved actively in decision making concerning this. Healthcare professionals have an obligation to discuss options and ensure that every patient understands these. More research is needed to change practices and create more realistic, person-centered, ethically acceptable, and constructive healthcare for elderly persons with an ICD.

Modern as well as postmodern attitudes and perceptions illustrate contradictory tendencies regarding deactivation of the implantable cardioverter defibrillator and replacement of the implantable cardioverter defibrillator in older persons nearing the end of life. The tendencies challenge each other in a struggle to gain position. On the other hand, they can also complement each other because professionalism and health professional expertise cannot stand alone when the patient's life is at stake but must be unfolded in an alliance with the patient who needs to be understood and accepted in his vulnerability.