'Everything is as before, but nothing is as it was'-A phenomenological-hermeneutic study of meaningfulness in adult patients with refractory epilepsy after interdisciplinary epilepsy rehabilitation.

BACKGROUND: Interdisciplinary Rehabilitation aimed at adults with refractory epilepsy (RE) establishes scientific evidence of higher health-related QoL, including improved self-worth and increased self-awareness as outcomes. Yet, there is very little research-based knowledge of how life transforms itself after the rehabilitation program from patients' perspectives. AIM: The aim of this study was to identify and describe how - from the patient perspectives - life transforms itself after rehabilitation among adults with RE, focusing on the meaningfulness of interdisciplinary rehabilitation. METHOD: Nine patients, who all completed an Interdisciplinary Rehabilitation Program in an Adult Epilepsy Clinic, were interviewed between six months and two years after rehabilitation. Nine interviews were recorded, transcribed verbatim, and analyzed as described by the phenomenological method 'Reflective Lifeworld Research' (RLR). FINDINGS: The essence of the phenomenon was revealed as life as a struggle for a dignified existence with RE as a navigating life companion. Through the clusters of meaning, four constituents emerged from the phenomenon: 1) to accept the limitations of body and mind; 2) to be on a journey toward your inner self; 3) to be quietly understood; 4) to fight for renewed hope and recognition during transition. CONCLUSION: The patients consider it significant to know their own bodies with the constraints that this involves. This knowledge helps them make decisions that not only have a positive effect on their epilepsy, but also raise their self-esteem and give them renewed hope and courage to face life. However, the struggle for a dignified life is continuously hard, and it comes to a head in patients' transition from 'patient to citizen', where asymmetries arise. These asymmetries leave considerable marks on the patients' worlds and challenge their renewed hope for a dignified existence.

The motivation to volunteer as a peer support provider to newly diagnosed patients with acute leukemia - A qualitative interview study.

PURPOSE: To identify and describe the motivation to volunteer as a peer support provider (PSP) to newly diagnosed patients with acute leukemia (AL). METHOD: A phenomenological individual interview study based on one open-ended question. The participants (n = 12) had previously been treated for AL and were recruited from an ongoing peer support feasibility study. The interviews were carried out prior to participation as a peer support provider. A phenomenological methodology developed by Amadeo Giorgi was used for the analysis of the data. RESULTS: The essence of the phenomenon can be characterized by the following characteristics: "A wish to move on with life", "A wish to instill hope to those in a hopeless situation" and "Expecting own course of disease to become meaningful". The motivation reflected the experience that when helping others they also helped themselves. CONCLUSION: Former patients treated for AL are motivated to undertake their new role as PSP because their own course of disease becomes meaningful, helps facilitate a better post-cancer recovery through greater self-confidence while instilling hope to newly diagnosed patients with AL. CLINICAL IMPLICATIONS: It is important to identify readiness before recruiting former patients for the PSP role and to develop peer-to-peer programs to sustain motivation. Future studies should examine how motivation changes over time while practicing as a PSP to newly diagnosed patient with AL.

Results from the family and coping oriented palliative homecare intervention study (FamCope)-A randomized controlled trial.

We tested if a family-and-coping-oriented basic palliative homecare intervention (six visits within 15 weeks) could improve quality-of-life and reduce anxiety and depression of advanced cancer patients and their closest relative, and reduce acute hospital admissions of patients. Fifty-seven families were randomized, but patient enrollment was terminated before reaching target sample due to a low recruitment rate. We found no evidence of effect of the FamCope-intervention, but further investigation of effective methods to support how families cope with advanced cancer at home is needed as levels of distress is as high in relatives as it is in patients. However, duration of interventions to support family-coping may need a considerable time-span to show effect on quality-of-life. We recommend that recruitment is undertaken in close collaboration with the hospital clinics, and that complexity of problems is used as inclusion criterion to decide when a family-coping intervention is needed based on the level of problems and distress in the family.

Barriers and facilitating factors related to use of early warning score among acute care nurses: a qualitative study.

BACKGROUND: The early warning score (EWS) was developed to identify deteriorating patients early. It is a track-and-trigger system based on vital signs designed to direct appropriate clinical responses based on the seriousness and nature of the underlying condition. Despite its wide dissemination, serious adverse events still occur, often due to failure among staff on general wards to follow the EWS protocol. The purpose of the study was to determine barriers and facilitating factors related to three aspects of the EWS protocol: 1) adherence to monitoring frequency, 2) call for junior doctors to patients with an elevated EWS, and 3) call for the medical emergency team. METHODS: Focus groups were conducted with nurses from medical and surgical acute care wards, and content analysis was used to identify barriers and facilitating factors in relation to the research questions. RESULTS: Adherence to monitoring frequency would frequently be set aside during busy periods for other tasks. Collaboration and communication with doctors about medical patients with elevated EWS was considered to be unrealistic due to the high number of patients with these scores. Collaboration with the medical emergency team was problematic, since many nurses found the team to have negative attitudes. CONCLUSION: EWS reduces complex clinical conditions to a single number, with the inherent risk to overlook clinical cues and subtle changes in patients' condition. The study showed that identifying and treating deteriorating patients is a collaborative task that requires diverse technical and non-technical skills for staff to perform optimally.

The experiences of health-related quality of life in patients with nonspecific symptoms who undergo a diagnostic evaluation for cancer: a qualitative interview study.

The diagnostic phase of cancer can affect health-related quality of life (HRQoL). The aim of this study was to investigate how patients with nonspecific symptoms experience HRQoL while undergoing diagnostic evaluations for cancer. Twenty-one participants who had completed a fast-track evaluation for possible cancer at one of three hospitals in the Capital Region, Denmark were interviewed 2-4 weeks after completing diagnostic evaluations. The interviews were semi-structured and were supported by an interview guide based on the same themes as in The European Organisation for Research and Treatment of Cancer Quality of Life questionnaire (EORCT-QLQ-C30). Data analysis was based on qualitative content analysis by Krippendorff. The analysis generated six categories: symptoms, physical-, role-, emotional-, cognitive- and social functioning, and the diagnostic fast-track experience. From these categories, a main theme was identified: Health-related quality of life is not solely affected by the diagnostic process. The results provide a comprehensive understanding of HRQoL in the diagnostic phase of possible cancer, which can be used not only to enhance evidence-based care, but also in the interpretation of the EORTC-QLQ-C30 scores. Psycho-social support with a focus on individual informational needs during the diagnostic phase may be warranted.

Are the changes in observed functioning after multi-disciplinary rehabilitation of patients with fibromyalgia associated with changes in pain self-efficacy?

OBJECTIVE: To examine the hypothesis that change in pain self-efficacy is associated with observed and self-reported activity, pain intensity, catastrophizing, and quality of life after multi-disciplinary rehabilitation of fibromyalgia patients. DESIGN: In-depth analyses of secondary outcomes of a randomized-controlled trial. SUBJECTS: Women (N = 187) with fibromyalgia. METHODS: Outcomes were Pain Self-Efficacy, Assessment of Motor and Process Skills (AMPS), SF-36 Physical Function (SF-36-PF), pain intensity, and SF-36 Mental Composite Score (SF-36-MCS) to assess quality of life and pain catastrophizing. Individual and group associations between outcomes were examined. RESULTS: Individual changes in pain self-efficacy were not associated with changes in observed activity: AMPS motor (rs = 0.08, p = 0.27) and process (rs = 0.12, p = 0.11), not even in those patients with a clinically relevant improvement in observed functioning (38.5%), and only weakly or moderatly with changes in SF-36-PF; (rs = 0.31, p < 0.0001), SF-36-MSC; (rs = 0.41, p < 0.0001), and pain catastrophizing (rs = -0.31, p < 0.0001). No differences in pain self-efficacy were observed between the rehabilitated group and controls (difference: 1.61; 95% CI: -0.84 to 4.06; p = 0.24). However, a subgroup (34%) had a clinically relevant improvement in pain self-efficacy. This group was younger (mean age 41.4 vs. 45.8, p = 0.01), more recently diagnosed (1.8 vs. 2.8 years, p = 0.003), but had an unresolved welfare situation (59% vs. 40%, p = 0.02). CONCLUSION: The main hypothesis was falsified, as there was no association between pain self-efficacy and actual performance of activity. The relation to functioning may be limited to perceived, cognitive-emotional aspects, as indicated by the weak to moderate correlations to the self-reported measures. Implications for Rehabilitation Improvement in observed activity post multi-disciplinary rehabilitation was not associated with change in pain self-efficacy. Patients performed better after rehabilitation, but did not perceive to have improved their capacity. The relationship between pain self-efficacy and functioning may be limited to cognitive-emotional aspects rather than actual activity. Both observational and self-reported measures should be included in evaluating outcomes of rehabilitation for patients with fibromyalgia.

How can group-based multidisciplinary rehabilitation for patients with fibromyalgia influence patients' self-efficacy and ability to cope with their illness: a grounded theory approach.

AIMS AND OBJECTIVES: To describe how group-based multidisciplinary rehabilitation for patients with fibromyalgia can influence patients' self-efficacy and ability to cope with their illness. BACKGROUND: Multidisciplinary rehabilitation is recommended in the management of fibromyalgia. Self-efficacy is said to influence and predict adaptive coping behaviours and functioning. However, knowledge is lacking on how rehabilitation programmes may influence self-efficacy and ability to cope, from the patients' perspective. DESIGN: Grounded theory study of semi-structured focus group interviews. METHODS: Participants (n = 17) were included in four focus groups that had completed a two-week multidisciplinary rehabilitation programme together. Interviews were conducted four weeks after each group had completed the programme. The analysis was conducted constant comparatively applying open, axial and selective coding. RESULTS: Categories (in italics) were derived from data in which the explanatory core category was identified: Learning to accept and live with pain as a life condition, and linked to three categories mutually influencing each other: Increased self-acceptance of living with the illness, experiencing acceptance from others and developing new coping strategies. Thus, patients benefitted from multidisciplinary rehabilitation with stronger self-efficacy and expectations to their future coping. However, limitations in the programme were identified, as the programme was short and intensive with no subsequent follow-up, and social welfare was not sufficiently addressed. Participants also found it difficult to maintain knowledge and were lacking individual sessions with the psychologist and had waited long to receive rehabilitation. CONCLUSION: Multidisciplinary rehabilitation may advantageously be offered to patients with fibromyalgia. However, earlier action with longer programmes, in which patients' social situation is addressed, comprising individual sessions with the psychologist, with multiple repetitions of the content and follow-up sessions, may further enhance the patients' self-efficacy and coping with their illness.

Alcoholic liver disease patients' perspective of a coping and physical activity-oriented rehabilitation intervention after hepatic encephalopathy.

AIM AND OBJECTIVE: To identify and describe the impact of a coping and physical activity-oriented rehabilitation intervention on alcoholic liver disease patients after hepatic encephalopathy in terms of their interaction with professionals and relatives. BACKGROUND: Patients who have experienced alcohol-induced hepatic encephalopathy have reduced quality of life, multiple complications, and social problems, and rehabilitation opportunities for these patients are limited. DESIGN: A grounded theory study and an evaluation study of a controlled intervention study. METHODS: Semi-structured interviews were conducted with 10 alcoholic liver disease patients who were diagnosed with hepatic encephalopathy and participated in a coping and physical activity-oriented rehabilitation intervention. Richard S. Lazarus's theory of stress and coping inspired the interview guide. RESULTS: The significance of a coping and physical activity-oriented rehabilitation intervention on alcoholic liver disease patients' ability to cope with problems after surviving alcohol-induced hepatic encephalopathy in terms of their interaction with professionals and relatives was characterised by the core category 'regain control over the diseased body'. This is subdivided into three separate categories: 'the experience of being physically strong', 'togetherness' and 'self-control', and they impact each other and are mutually interdependent. CONCLUSION: Alcoholic liver disease patients described the strength of the rehabilitation as regaining control over the diseased body. Professionals and relatives of patients with alcoholic liver disease may need to focus on strengthening and preserving patients' control of their diseased body by facilitating the experience of togetherness, self-control and physical strength when interacting with and supporting patients with alcoholic liver disease. RELEVANCE TO CLINICAL PRACTICE: A coping and physical activity-oriented rehabilitation intervention may help alcoholic liver disease patients to regain control over their diseased body and give patients the experience of togetherness, self-control and physical strength. Professionals should be aware of giving the patients the experience of togetherness in their interactions, help them perceive self-control and gain physical strength during their rehabilitation.

Health-related quality of life, anxiety and depression in the diagnostic phase of suspected cancer, and the influence of diagnosis.

BACKGROUND: Undergoing diagnostic evaluation for cancer has been associated with a high prevalence of anxiety and depression and affected health-related quality of life (HRQoL). The aims of this study were to assess HRQoL, anxiety, and depression pre- and post-diagnosis in patients undergoing diagnostic evaluations for cancer due to non-specific symptoms; to examine changes over time in relation to final diagnosis (cancer yes/no); and to assess the predictive value of pre-diagnostic psychological, socio-demographic and clinical factors. METHODS: A prospective, multicenter survey study of patients suspected to have cancer based on non-specific symptoms was performed. Participants completed the EORTC-QLQ-C30 quality of life scale, HADS, SOC-13 and self-rated health before and after completing diagnostic evaluations. Intra- and inter-group differences between patients diagnosed with cancer versus patients with non-cancer diagnoses were calculated. The impact of baseline psychological, socio-demographic, and medical factors on HRQoL, anxiety and depression at follow-up was explored by bootstrapped multivariate linear regression analyses and logistic regression analyses. RESULTS: A total of 838 patients participated in this study; 679 (81 %) completed the follow-up. Twenty-two percent of the patients received a cancer diagnosis at the end of the follow-up. Patients presented initially with a high burden of symptoms and affected role and emotional functioning and global health/QL, irrespective of diagnosis. The prevalence of clinical anxiety prior to knowledge of the diagnosis was 32 % in patients with cancer and 35 % in patients who received a non-cancer diagnosis. HRQoL and anxiety improved after diagnosis, and a larger improvement was seen in patients who received a non-cancer diagnosis. There were no intra- or inter-group differences in the depression scores. The strongest predictors of global QL, anxiety, and depression after a known diagnosis were baseline scores, co-morbidity and poor self-rated health. CONCLUSIONS: Patients undergoing diagnostic evaluations for cancer based on non-specific symptoms experience a high prevalence of anxiety and affected quality of life prior to knowledge of the diagnosis. The predictive value of the baseline scores is important when assessing the psychological impact of undergoing diagnostic evaluations for cancer.

Undergoing Diagnostic Evaluation for Possible Cancer Affects the Health-Related Quality of Life in Patients Presenting with Non-Specific Symptoms.

AIM: Undergoing diagnostic evaluation for possible cancer can affect health-related quality of life (HRQoL). The aims of this study were to examine the HRQoL in patients undergoing a diagnostic evaluation for possible cancer due to non-specific symptoms and further to investigate the impact of socio-demographic and medical factors associated with HRQoL at the time of diagnosis. METHODS: This was a prospective, multicenter survey study that included patients who were referred for a diagnostic evaluation due to non-specific cancer symptoms. Participants completed the EORTC-QLQ-C30 quality of life scale before and after completing the diagnostic evaluation. The baseline and follow-up EORTC-QLQ-C30 scores were compared with reference populations. The impact of socio-demographic and medical factors on HRQoL at follow-up was explored by bootstrapped multivariate linear regression. RESULTS: A total of 838 patients participated in the study; 680 (81%) also completed follow-up. Twenty-two percent of the patients received a cancer diagnosis at the end of follow-up. Patients presented initially with a high burden of symptoms, less role and emotional functioning and a lower global health/QoL. Most domains improved after diagnosis and no clinically important difference between baseline and follow-up scores was found. Patients reported effects on HRQoL both at baseline and at follow-up compared with the Danish reference population and had similar scores as a cancer reference population. Co-morbidity, being unemployed and receiving a cancer diagnosis had the greatest effect on HRQoL around the time of diagnosis. CONCLUSIONS: Patients with non-specific symptoms reported an affected HRQoL while undergoing a diagnostic evaluation for possible cancer. Morbidity, being unemployed and receiving a cancer diagnosis had the greatest effect on HRQoL around the time of diagnosis.

The adaptation of a Danish version of the Pain Self-Efficacy Questionnaire: reliability and construct validity in a population of patients with fibromyalgia in Denmark.

The aim of this study was to translate, culturally adapt and evaluate the psychometric properties of the Pain Self-Efficacy Questionnaire (PSEQ) in a population of patients with fibromyalgia in Denmark. The study sample included 102 patients diagnosed with fibromyalgia referred to a specialist clinic. The PSEQ was translated and adapted to a Danish setting using a standard stepwise forward-backward translation procedure, followed by initial testing and focus group interview. Reliability was examined by analysing internal consistency and test-retest agreement. Construct validity was examined by investigating dimensionality, targeting, local independence, category functioning and differential item functioning (DIF). Reliability was high: Cronbach's alpha 0.88, test-retest correlation 0.93, intraclass correlation coefficient (ICC) 0.89 and item-total correlations 0.44-0.70. Factor analyses and item response (IRT) models indicated unidimensionality, and the PSEQ-DK was well targeted to the sample. High interitem correlation was observed between two items, indicating local dependence, and item misfit and DIF were observed for a few items. However, the overall fit of the scale to a single-factor model and IRT models supported acceptable construct validity. The PSEQ-DK showed acceptable psychometric properties and can therefore represent a reliable and valid measure for evaluating self-efficacy in patients with fibromyalgia in Denmark.

Coping and rehabilitation in alcoholic liver disease patients after hepatic encephalopathy--in interaction with professionals and relatives.

AIMS AND OBJECTIVES: To identify and describe conditions that limit or support patients, with alcoholic liver disease after surviving alcohol-induced hepatic encephalopathy, ability to cope with current and potential physical and psychosocial problems--in interaction with professionals and relatives--and to recommend appropriate interventions. BACKGROUND: Alcoholic liver disease patients surviving alcohol-induced hepatic encephalopathy have significantly impaired quality of life. Internationally, there is a lack of knowledge about the conditions that affect alcoholic liver disease patients' coping and rehabilitation. DESIGN: A grounded theory study. METHODS: Semi-structured interviews, conducted with 11 alcoholic liver disease patients who were diagnosed with hepatic encephalopathy. The interview guide was inspired by Richard S. Lazarus's theory of stress and coping. RESULTS: The elements that support or limit alcoholic liver disease patients' ability to cope with physical and psychosocial problems in interaction with professionals and relatives were represented by the core category 'Struggle for preservation of identity as a significant individual'. It was characterised by three categories, which are interrelated and impact upon each other: 'Acknowledgement', 'Struggle to maintain control' and 'Achieving a sense of security'. CONCLUSION: Alcoholic liver disease patients experience a struggle to preserve their identity as a significant individual. It can be assumed that professionals and relatives in their interaction with, and support of, patients should focus on strengthening and preserving patients' identity in the form of acknowledgement, helping alcoholic liver disease patients maintain self-control and providing a safety net so patients feel a sense of security. RELEVANCE TO CLINICAL PRACTICE: It can be assumed that professionals should support alcoholic liver disease patients' appraisal of, and coping with, physical and psychosocial problems based on acknowledgment, understanding and a sympathetic attitude. Professionals should proactively approach patients when they withdraw. It may be useful for professionals to be aware of alcoholic liver disease patients' individual coping strategies and thereby their individual requirements for professional supportive intervention.

Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope).

Cancer patients and their family caregivers need support to cope with physical, psychosocial, and existential problems early in the palliative care trajectory. Many interventions target patient symptomatology, with health care professionals acting as problem-solvers. Family coping, however, is a new research area within palliative care. The FamCope intervention was developed to test if a nurse-led family-coping-orientated palliative home care intervention would help families cope with physical and psychosocial problems at home--together as a family and in interaction with health care professionals. However, an unexpectedly high number of families declined participation in the trial. We describe and discuss the recruitment strategy and patient reported reasons for non-participation to add to the knowledge about what impedes recruitment and to identify the factors that influence willingness to participate in research aimed at family coping early in the palliative care trajectory. Patients with advanced cancer and their closest relative were recruited from medical, surgical, and oncological departments. Reasons for non-participation were registered and characteristics of participants and non-participants were compared to evaluate differences between subgroups of non-participants based on reasons not to participate and reasons to participate in the trial. A total of 65.9% of the families declined participation. Two main categories for declining participation emerged: first, that the "burden of illness is too great" and, second, that it was "too soon" to receive this kind of support. Men were more likely to participate than women. Patients in the "too soon" group had similar characteristics to participants in the trial. Timing of interventions and readiness of patients and their relatives seems to affect willingness to receive a family-coping-orientated care approach and impeded recruitment to this trial. Our findings can be used in further research and in clinical practice in order to construct interventions and target relevant populations for early family-coping-orientated palliative care.

Home-based telehealth hospitalization for exacerbation of chronic obstructive pulmonary disease: findings from "the virtual hospital" trial.

BACKGROUND: Telehealth interventions for patients with chronic obstructive pulmonary disease (COPD) have focused primarily on stable outpatients. Telehealth designed to handle the acute exacerbation that normally requires hospitalization could also be of interest. The aim of this study was to compare the effect of home-based telehealth hospitalization with conventional hospitalization for exacerbation in severe COPD. MATERIALS AND METHODS: A two-center, noninferiority, randomized, controlled effectiveness trial was conducted between June 2010 and December 2011. Patients with severe COPD admitted because of exacerbation were randomized 1:1 either to home-based telehealth hospitalization or to continue standard treatment and care at the hospital. The primary outcome was treatment failure defined as re-admission due to exacerbation in COPD within 30 days after initial discharge. The noninferiority margin was set at 20% of the control group's risk of re-admission. Secondary outcomes were mortality, need for manual or mechanical ventilation or noninvasive ventilation, length of hospitalization, physiological parameters, health-related quality of life, user satisfaction, healthcare costs, and adverse events. RESULTS: In total, 57 patients were randomized: 29 participants in the telehealth group and 28 participants in the control group. Testing the incidence of re-admission within 30 days after discharge could not confirm noninferiority (lower 95% confidence limit [CL], -24.8%; p=0.35). Results were also nonsignificant at 90 days (lower 95% CL, -16.2%; p=0.33) and 180 days (lower 95% CL, -16.6%; p =0.33) after discharge. Superiority testing on secondary outcomes showed nonsignificant differences between groups. Healthcare costs have not yet been evaluated. CONCLUSIONS: Whether home-based telehealth hospitalization is noninferior to conventional hospitalization requires further investigation. The results indicate that a subgroup of patients with severe COPD can be treated for acute exacerbation at home using telehealth, without the physical presence of health professionals and with a proper organizational "back-up."

Telemedicine-based treatment versus hospitalization in patients with severe chronic obstructive pulmonary disease and exacerbation: effect on cognitive function. A randomized clinical trial.

OBJECTIVES: Telemedicine is gaining ground in the treatment of patients with chronic obstructive pulmonary disease (COPD). Because telemedicine often requires both participation and engagement of the patients, it is important to take differences in cognitive ability into account, as there is evidence that cognitive dysfunction may be a limitation in patients with severe COPD. The aim of this study was to investigate whether cognitive performance is better after telemedicine-based treatment than after conventional hospitalization in patients with severe COPD and a mild to moderate exacerbation. MATERIALS AND METHODS: This randomized study was a substudy of the "Virtual Hospital," a multicenter, randomized controlled trial. The primary outcome in this substudy was cognitive function, evaluated 3 days and 6 weeks after discharge using a neuropsychological test battery comprising four tests and seven variables. RESULTS: We included 44 patients consecutively. Baseline characteristics were as follows: mean age, 70 (standard deviation [SD] 10) years; mean forced expiratory volume in 1 s, 1.0 (SD 0.55) L (42% of predicted); mean hemoglobin oxygen saturation, 95 (SD 2.0) percent; and mean Mini Mental State Examination score, 27.5 (SD 1.6) points. The performance in all seven neuropsychological test variables tended to be better in the group allocated to virtual admission 3 days and 6 weeks after discharge, but the difference was not significant after Bonferroni's correction for multiple comparisons. CONCLUSIONS: There were no significant differences in cognitive performance between the telemedicine-based group and the conventional hospital group. Patients with severe COPD suffering from mild to moderate exacerbations were able to manage the telemedicine-based treatment despite the reduced cognitive function often seen in COPD patients.

The impact of virtual admission on self-efficacy in patients with chronic obstructive pulmonary disease - a randomised clinical trial.

AIMS AND OBJECTIVES: To investigate how virtual admission during acute exacerbation influences self-efficacy in patients with chronic obstructive pulmonary disease, compared with conventional hospital admission. BACKGROUND: Telemedicine solutions have been highlighted as a possible way to increase self-efficacy in patients with chronic diseases, such as chronic obstructive pulmonary disease. However, little is known about how telemedicine-based virtual admission as a replacement of hospital admission during acute exacerbation affects chronic obstructive pulmonary disease patients' self-efficacy. DESIGN: This study was a nonblinded, randomised clinical multicentre trial. The study was a substudy to The Virtual Hospital, investigating the feasibility and safety of telemedicine-based treatment at home for patients with acute exacerbation of chronic obstructive pulmonary disease. METHODS: Participants were consecutively randomised to virtual admission or conventional hospital admission. Data from 50 patients were analysed. Self-efficacy was assessed at baseline, three days after discharge, and also six weeks and three months after discharge, using the Danish version of 'The chronic obstructive pulmonary disease self-efficacy scale'. RESULTS: Intergroup comparison showed no significant differences between the two groups at baseline, three days after discharge, six weeks after discharge or three months after discharge. Furthermore, intragroup comparison did not reveal significant differences in the chronic obstructive pulmonary disease self-efficacy scale mean sum score within the two groups. CONCLUSIONS: The results of the study suggest that there is no difference between self-efficacy in chronic obstructive pulmonary disease patients undergoing virtual admission, compared with conventional hospital admission. However, the anticipated sample size could not be reached, which prompts caution regarding interpretation of the findings. RELEVANCE TO CLINICAL PRACTICE: This study provides new insight into how virtual admission affects chronic obstructive pulmonary disease patients' self-efficacy. Clinicians should consider the timing, duration and the content in the design of telemedical interventions directed at improving chronic obstructive pulmonary disease patients' self-efficacy, as telemedicine solutions alone may not be sufficient to enhance self-efficacy.

Identifying factors significant to continuity in basic palliative hospital care-from the perspective of patients with advanced cancer.

Based on the research method grounded theory and semistructured patient interviews at home following hospitalization, the aim was to provide information on issues relating to the identification and alleviation of patients' physical and emotional problems, understood as continuity in palliative care. The interviews were based on selected problems that patients found significant. The results are distilled into the core category disheartening interactions and four categories: falling outside the professional framework, not being seen as a person, unidentified/unmet need for guidance and involvement, and patient strategy-minimizing conflict. The categories are significant in generating and maintaining continuity in basic palliative care.

How virtual admission affects coping - telemedicine for patients with chronic obstructive pulmonary disease.

AIMS AND OBJECTIVES: To describe what characterises chronic obstructive pulmonary disease patients' coping of physical, emotional and social problems before, during and after virtual admission, in interaction with health professionals and relatives. BACKGROUND: Telemedicine for patients with chronic obstructive pulmonary disease is gaining ground. However, virtual admission using telemedicine in the patients' home as a replacement of hospital admission has received little attention. Furthermore, little is known about how telemedicine affects chronic obstructive pulmonary disease patients' coping. DESIGN: Grounded Theory study using semi-structured interviews. METHODS: The study was a part of The Virtual Hospital study, exploring virtual admission for patients with acute exacerbation of chronic obstructive pulmonary disease. During virtual admission, patients had access to medical equipment consisting of monitoring devices, medication, nebuliser and a touch screen with built-in videoconference system. Nine participants were interviewed after virtual admission. Open coding, axial coding and selective coding, using constant comparative analysis, were conducted. RESULTS: A substantive Grounded Theory was developed, containing the core category - struggling to be in control of life with chronic obstructive pulmonary disease - related to four categories: complete powerlessness, dependency, pursuit of regaining autonomy and efforts to remain in control of problems related to chronic obstructive pulmonary disease. Virtual admission supported participants' autonomy. The involvement of health professionals was reduced as participants used the medical equipment to cope with disease-related problems. Participants' coping was closely linked to the presence of the equipment, making it difficult for them to apply their experiences after discharge from virtual admission. CONCLUSIONS: Virtual admission may support chronic obstructive pulmonary disease patients' coping of physical and emotional problems. However, coping experiences made during virtual admission may not be directly applicable outside a telemedical setting. RELEVANCE TO CLINICAL PRACTICE: Telemedicine may result in different roles for patients, relatives and health professionals. Clinicians should consider how they can support chronic obstructive pulmonary disease patients' coping during telemedical interventions, focusing on how to ensure a sustained improvement that patients can benefit from outside the telemedical setting.

Hospital-admitted COPD patients treated at home using telemedicine technology in The Virtual Hospital Trial: methods of a randomized effectiveness trial.

BACKGROUND: Recent reviews suggest that telemedicine solutions for patients with chronic obstructive pulmonary disease (COPD) may prevent hospital readmissions and emergency room visits and improve health-related quality of life. However, the studies are few and only involve COPD patients who are in a stable phase or in-patients who are ready for discharge. COPD patients hospitalized with an acute exacerbation may also benefit from telemedicine solutions. The overall aim is to investigate a telemedicine-based treatment solution for patients with acute exacerbation of COPD at home as compared to conventional hospital treatment measured according to first treatment failure, which is defined as readmission due to COPD within 30 days after discharge. METHODS: COPD patients with acute exacerbation who fulfilled the eligibility criteria and were from two university hospitals in Denmark were randomized (1:1) by computer-generated tables that allocated treatments in blocks of four to receive either standard treatment at the hospital or the same standard treatment at home using telemedicine technology (that is, a video conference system with a touch screen and webcam and monitoring equipment (spirometer, thermometer, and pulse oximeter)). Patients treated in the telemedicine group were backed up by an organizational setting securing 24/7/365 online access to the hospital, as well as access to oxygen, nebulizer therapy, oral medical therapy and surveillance of vital parameters from home monitoring devices. Patients in both groups were discharged when clinically stable and when fulfilling five pre-specified discharge criteria. Follow-up was performed at 1, 3 and 6 months after discharge. RESULTS: Enrollment of patients started in June 2010 and ended in December 2011. Follow-up ended in May 2012. Results were analyzed in 2013. CONCLUSIONS: The results may have implications on future hospital treatment modalities for patients with severe exacerbations in COPD where telemedicine may be used as an alternative to conventional admission. TRIAL REGISTRATION: Clinical Trials NCT01155856.

Conditions that are significant for advanced cancer patients' coping with their suffering-as experienced by relatives.

As long as life could be lived as before patients could cope with their problems. But the progression of the illness challenged feelings and filled life with increasing levels of chaos and feelings of powerlessness. Relatives became involved quite late in the patients' interaction with the professionals, an interaction that was characterized by lack of continuity and the professionals' focus on the patient's sick body. It was therefore seldom that professionals had insight into the family's resources and need for professional support. This made it more difficult for the family to evaluate, control and cope with their suffering. Instead, patients gradually adapted to the professionals' and relatives' priorities and sometimes their control over the increasingly failing and dying body.