Dorthe Overgaard

Quality of life and cognitive function in Fontan patients; a population-based study.

BACKGROUND After the Fontan procedure patients are at risk for reduced quality of life (QoL) and cognitive function. We aimed to assess these important factors in Danish Fontan patients and to compare the results with a group of healthy controls. METHODS All Fontan patients living in Denmark were identified and invited to participate. QoL was evaluated using the Pediatric Quality of Life Inventory (PedsQL) version 4.0 generic core module in patients <16 years and the Short Form 36 questionnaire (SF-36) in patients ≥16 years. Cognitive function was evaluated in all patients ≥6 years using the Quick Test of Cognitive Speed. To evaluate if QoL correlated with exercise capacity, patients performed a symptom-limited bicycle test. RESULTS 158 of 179 eligible patients (88%) consented to participate. Median age was 13.9 years (IQR: 10.2-19.3). PedsQL scores increased with age but were significantly lower among patients than among controls. SF-36 physical scores were significantly lower in patients compared to controls while psychosocial scores were similar. Cognitive speed was significantly reduced in patients at all ages compared to controls. No significant difference in PedsQL-/SF-36 scores or cognitive speed was found between hypoplastic left heart syndrome (HLHS) and non-HLHS Fontan patient. PedsQL-/SF-36 scores in patients ≥10 years correlated significantly to cognitive speed but not to peak exercise capacity. CONCLUSION QoL is reduced in Fontan children compared to their healthy counterparts whereas in patients ≥16 years only physical, but not psychosocial QoL is reduced. Cognitive speed was significantly lower in patients at all ages compared to controls.

Patient-Reported Outcomes in Adult Survivors with Single-Ventricle Physiology

Objectives: Data on patient-reported outcomes (PROs) in patients with single-ventricle physiology (SVP) are scarce. We sought (1) to describe the perceived health status, quality of life, symptoms of anxiety and depression, and sense of coherence in adult survivors with SVP, (2) to compare PROs across functional classes, and (3) to compare PROs between patients and controls. Methods: A case-control study in two adult congenital heart programmes with 62 adult survivors with SVP were matched to 172 healthy controls. A wide range of PROs were measured using validated questionnaires. The treating physician classified patients according to the Ability Index. Results: Patients with SVP have a good functional status. Patients in Ability Index class I consistently reported the best scores, similar to those of healthy controls. Negative associations were found between functional class and outcomes of perceived health and quality of life. For patients in Ability Index class II and III, PROs were poorer. Conclusions: PROs in patients with SVP are generally good.

Life in transition: a qualitative study of the illness experience and vocational adjustment of patients with left ventricular assist device

Background: A left ventricular assist device (LVAD) is used as a bridge to transplantation in patients with acute heart failure. The device is a major bodily invasion that challenges everyday life. Only few studies have explored the psychosocial adjustments of patients living with an LVAD. Objective: The aim of this study was to explore the lived experience of patients with LVADs. Methods: The present study had a qualitative explorative design using in-depth interviews of 10 adult patients that had experienced life with an LVAD from 2008 to 2010 in Denmark. We constructed an interview guide with themes relating to the chronology of the illness trajectory. Data were managed by the qualitative computer package NVivo 8. As a theoretical framework, we chose a life-stage model for the main theme: Life With LVAD. The model describes the developmental tasks in each age group, and we looked at the physical, psychological, social, and vocational adjustments of patients with LVADs. Results: Despite the suddenness of onset and gravity of illness, the patients in our study coped well with their situation. While bridging to transplantation, the patients experienced the ambivalence of gratitude and frustration toward the LVAD, and during preparation for cardiac transplantation, they experienced the ambivalence of hope and fear. Some resolved their emotional ambiguity by procrastination in relation to vocational adjustments that were necessary due to their illness. Older patients with occupational security were quicker to resume work and everyday life. Conclusions: Patients with LVADs succeeded somewhat in reestablishing their lives, but the younger individuals still need to consider vocational options. Some patients need help to get out of the sick role that kept them on disability benefits. The patients all relied on support from close family: parents, spouses, and children.

Psychological workload and weight gain among women with and without familial obesity.

Objective: High job demands and low job influence may be associated with subsequent weight gain. Predisposition to obesity may further modify such associations. The purpose of the study was to determine whether familial predisposition to obesity modified associations between psychological workload and 6‐year weight changes among nurses.

Efficacy of a minimal home-based psychoeducative intervention versus usual care for managing anxiety and dyspnoea in patients with severe chronic obstructive pulmonary disease: a randomised controlled trial protocol

Introduction In its final stages, chronic obstructive pulmonary disease is a severely disabling condition that is characterised by dyspnoea, which causes substantial anxiety. Anxiety is associated with an impaired quality of life and increased hospital admissions. Untreated comorbid anxiety can have devastating consequences for both patients and their relatives. Non-pharmacological interventions, including cognitive–behavioural therapy, have been effective in managing anxiety and dyspnoea in patients with chronic obstructive pulmonary disease. However, the majority of existing interventions have tested the efficacy of relatively intensive comprehensive programmes and primarily targeted patients who have moderate pulmonary disease. We present the rationale and design for a trial that focused on addressing the challenges experienced by severe pulmonary disease populations. The trial investigates the efficacy of a minimal home-based psychoeducative intervention versus usual care for patients with severe chronic obstructive pulmonary disease. Methods and analysis The trial is a randomised controlled trial with a 4-week and 3-month follow-up. 66 patients with severe chronic obstructive pulmonary disease and associated anxiety will be randomised 1:1 to either an intervention or control group. The intervention consists of a single psychoeducative session in the patients home in combination with a telephone booster session. The intervention is based on a manual, with a theoretical foundation in cognitive–behavioural therapy and psychoeducation. The primary outcome is patient-reported anxiety as assessed by the Hospital and Anxiety and Depression Scale (HADS). Ethics and dissemination This trial complies with the latest Declaration of Helsinki, and The Ethics Committee of the Capital Region of Denmark (number H-1-2013-092) was queried for ethical approval. Trial results will be disseminated in peer-reviewed publications and presented at scientific conferences. Trial registration number NCT02366390.

Living with half a heart--experiences of young adults with single ventricle physiology: a qualitative study.

Background and Research Objective:Approximately 3% of children with congenital heart disease born in Denmark have single ventricle physiology (SVP). In previous decades, these children did not survive into adulthood. However, because of new surgical techniques and improved medical care, they now have a 90% survival rate. Several studies have described the somatic status of SVP patients using clinical parameters; however, only a few studies have researched the life perspectives and coping skills in this patient group. The aim of this study was to investigate how young adults with an SVP diagnosis are coping with adulthood and the emotional experiences of daily life. Subjects and Methods:Semistructured, qualitative interviews were held with 11 SVP respondents, selected by physical and psychological parameters identified in an earlier quantitative study. Data from the interviews were analyzed by a research group using a phenomenological methodology. Results and Conclusions:The goal for SVP patients is to gain control over their disease to live normal lives. Patients require special support from their core network to overcome physical and psychological challenges. Respondents underscored the need for friends and resource persons outside the family to help lift them out of their role as disabled cardiac patients and provide them with “normal” life experiences.

Sense of coherence as a resource for quality of life in patients with congenital heart disease: The benefits continue into adulthood:

Apers and co-workers published a study in the European Journal of Cardiovascular Nursing in which they found that sense of coherence (SOC) partly explained why adolescents with congenital heart disease can have a better quality of life than healthy counterparts.1 With their study, they provide the first evidence to support a hypothesis that was advanced a few years before, stipulating that SOC could be an essential factor in this matter.2 In the limitations of the study, Apers et al. conclude that their findings are not generalizable until they have been confirmed in replication research.1 To date, nine studies measuring SOC in patients with congenital heart disease have been published, seven of which involved adolescent patients1,3–8 and two involved adults.9,10 Indeed, our research group previously conducted a study on patient-reported outcomes in adult survivors with single-ventricle physiology, including SOC as a variable.9 We found that, in general, the quality of life of patients with single-ventricle physiology was somewhat lower than that of healthy controls. However, this was largely dependent on patients’ functional class. In other words, patients in Ability class I, reflecting a normal life and being able to do full time work, had a quality of life that was similar to that of healthy peers. Patients who had a worse functional status presented with poorer quality of life.9 SOC did not differ over the functional classes. Since Apers and colleagues called for replication research, we replicated their statistical methods on our dataset. We included 62 adult patients with single-ventricle physiology, and matched these patients with 172 healthy controls, based on sex and age (1:n matching). In keeping with Apers et al., we used a linear mixed model, adjusting for perceived health status, health risk behavior, and depressive symptomatology. Group belonging (patients or controls) and all other variables were entered as fixed effects (enter method), and matching pair was entered as a random effect. Because patients and controls were matched for sex and age, these variables were excluded from the model. As in the study by Apers, we measured quality of life using a linear analogue scale;11,12 SOC using the SOC-13 scale;13 and health behavior using the Health Behavior Scale-Congenital Heart Disease.14 In contrast, we used the Medical Outcome Study Short Form-36 (SF-36) to measure perceived health15 and the Hospital Anxiety and Depression Scale (HADS) for depression,16 instead of the Pediatric Quality of Life Inventory (PedsQL)17 and the Center for Epidemiologic Studies Depression Scale (CES-D)18 that were employed in the Apers study. We did not include educational level and personal relationships in the model, because the first variable could not be operationalized in a similar way as Apers et al. did, and the latter was not measured in our study. Adjusted for other potentially confounding factors, linear mixed modeling showed that the quality of life in our patients was explained by a higher SOC, better general health, better mental health and less depressive symptomatology (Table 1). Unlike in the study by Apers, group belonging was not a significant factor in our sample, which suggests that this model is applicable to both patients with single-ventricle physiology and healthy individuals. In conclusion, we can confirm the findings of Apers and colleagues that SOC is an important resource for quality of life. This is not only true for the broad population of adolescents with congenital heart disease, but, as our analysis demonstrates, also for adult patients with a very complex heart condition. As evidence on the role of SOC for patients’ quality of life is mounting, it becomes an utmost interesting target for nursing interventions.19 Sense of coherence as a resource for quality of life in patients with congenital heart disease: The benefits continue into adulthood

Supportive and non-supportive interactions in families with a type 2 diabetes patient: an integrative review

BackgroundType 2 diabetes and its management affect the patient and the close family potentially causing either psychological distress or increased sense of responsibility and collaboration in these families. Interactions between patient and family play an important role in maintaining lifestyle changes and diabetes self-management. The purpose of this integrative review was to summarise and assess published studies on the intra-family perspective of supportive and non-supportive interactions in families with a type 2 diabetes patient.MethodsIncluded in the review were published qualitative and quantitative studies that examined the intra-family perspective on supportive and non-supportive interactions. We searched the literature from 2000 to 2016 and the search strategy comprised the following databases: Cochrane, PubMed, CINAHL, Web of Science, PsycINFO and Psyc-ARTICLES as well as hand searching of reference lists. Quality assessment, data extraction and analysis were undertaken on all included studies.ResultsWe identified five eligible research papers. Employing content analysis three categories describing interactions were refined: Impact of practical action, impact of emotional involvement, and impact of communication content. Supportive interactions included encouraging communication and family collaboration in managing diet, medications, and blood glucose checking. Non-supportive interactions were visible irritation, nagging behaviour and refusing to share the burden of living with diabetes.ConclusionThe findings stress the importance of including both patient and family in clinical practice to target diabetes self-management adherence and well-being of the whole family. The majority of self-management occurs within the family environment. Therefore, the intra-family perspective of supportive and non-supportive interactions should be understood and addressed as the family members are interdependent and affected by each other. Future research assessing the impact of professional support and the family function will have the potential to improve the daily life and well-being of patients with type 2 diabetes as well as the whole family.

Experience of exclusion: a framework analysis of socioeconomic factors affecting cardiac rehabilitation participation among patients with acute coronary syndrome

Background: The Danish public healthcare system provides comprehensive care based on the principle of equal access. However, it is well documented that patients with low socioeconomic position are less likely to participate in cardiac rehabilitation. More knowledge is needed to understand this phenomenon. The aim of the study was to explore the patient experience of barriers to completion of phase II cardiac rehabilitation, and to investigate the impact of socioeconomic factors on completion of cardiac rehabilitation. Methods: The study had a qualitative explorative design using semi-structured individual or dyadic interviews with patients (n = 24) and close relatives (n = 12). Informants were sampled from a quantitative prospective study of 302 patients with acute coronary syndrome and data were analyzed using the framework method. Results: Patients in different socioeconomic groups were challenged by a rigid and non-individualized rehabilitation program. A total of five themes were identified that might explain non-participation in cardiac rehabilitation: exclusion by time and place, exclusion by health beliefs, exclusion from counseling, exclusion by alienation, and exclusion of relatives. The themes were described in a matrix of socioeconomic factors of age, sex, education and employment. Conclusions: Patients in various socioeconomic subgroups felt excluded from cardiac rehabilitation for different reasons. This study supports earlier findings and provides examples of real-life issues that need to be addressed to prevent attrition and encourage participation. Equal access to cardiac rehabilitation can only be reached if the physical and psychological needs of patient and family are met by tailoring therapy to consider age, sex, education and employment groups.

Social inequality in phase II cardiac rehabilitation attendance: the impact of potential mediators

Background: Cardiac rehabilitation participation is an essential component of the contemporary management of coronary heart disease. However, patients with low socioeconomic position are less likely to attend the rehabilitation programme. Aim: We aimed to explore the effect of potential mediators between socioeconomic position defined by educational attainment and cardiac rehabilitation attendance. Methods: Prospective observational study of patients with acute coronary syndrome (N=302). Logistic regression and mediation analysis was conducted to explore mechanisms of non-attendance. Results: Thirty per cent attended full cardiac rehabilitation. Patients with low educational attainment, comorbidities, long commute to cardiac rehabilitation centre, and lone dwelling were less likely to attend full cardiac rehabilitation, whereas patients with high anxiety and depression score were more likely to attend full cardiac rehabilitation. Patients with low educational attainment had lower self-efficacy and longer commute compared with patients with high educational attainment. The potential mediators included in the study, however, did not have a significant mediation effect. Conclusion: Our study demonstrated a variety of mechanisms contributing to cardiac rehabilitation non-attendance. Further, the study demonstrated that non-attendance was especially related to the cardiac rehabilitation elements involving lifestyle modifications. However, the mechanisms explaining social inequality in full cardiac rehabilitation are still not fully understood.