Self-care research: How to grow the evidence base? (reprint).

BACKGROUND AND OBJECTIVE: The number of studies in the area of self-care is growing and international researchers are increasingly developing self-care interventions to improve outcomes of individual patients and communities. However, growth of the evidence is still slow due to challenges with designing and testing self-care interventions. In this article we address major methodological challenges with regard to the definition of self-care, use of theory, and research design, intended to provide guidance to researchers in this field. METHOD: During the inaugural conference of the International Center for Self-Care Research held in Rome, Italy in June 2019 we identified important issues in existing self-care research. Discussion and literature review lead to eight recommendation for future self-care research. RESULTS: In preparation, begin with a theoretically sound definition of self-care. In planning the intervention, build on and extend previous studies. Use theory to develop self-care interventions and consider translational models to guide development, evaluation and implementation of complex self-care interventions. Employ a study design that fits the current phase and objectives of the research and measure self-care and related factors carefully. In reporting, describe the sample and setting sufficiently so that others can draw conclusions about generalizability and applicability to their practice and patient population. In interpretation, describe how the intervention is assumed to work (causal assumptions) and its key components. CONCLUSION: Our review of existing self-care research clearly illustrates that the recommendations we provide are needed if we are to substantially grow the evidence base supporting self-care. Embracing a core set of principles will allow us to build on each other's work. Tweetable abstract: A core set of methodological principles is needed to substantially grow the evidence base supporting self-care.

Self-care research: How to grow the evidence base?

BACKGROUND AND OBJECTIVE: The number of studies in the area of self-care is growing and international researchers are increasingly developing self-care interventions to improve outcomes of individual patients and communities. However, growth of the evidence is still slow due to challenges with designing and testing self-care interventions. In this article we address major methodological challenges with regard to the definition of self-care, use of theory, and research design, intended to provide guidance to researchers in this field. METHOD: During the inaugural conference of the International Center for Self-Care Research held in Rome, Italy in June 2019 we identified important issues in existing self-care research. Discussion and literature review lead to eight recommendation for future self-care research. RESULTS: In preparation, begin with a theoretically sound definition of self-care. In planning the intervention, build on and extend previous studies. Use theory to develop self-care interventions and consider translational models to guide development, evaluation and implementation of complex self-care interventions. Employ a study design that fits the current phase and objectives of the research and measure self-care and related factors carefully. In reporting, describe the sample and setting sufficiently so that others can draw conclusions about generalizability and applicability to their practice and patient population. In interpretation, describe how the intervention is assumed to work (causal assumptions) and its key components. CONCLUSION: Our review of existing self-care research clearly illustrates that the recommendations we provide are needed if we are to substantially grow the evidence base supporting self-care. Embracing a core set of principles will allow us to build on each other's work. Tweetable abstract: A core set of methodological principles is needed to substantially grow the evidence base supporting self-care.

Selective microsurgical treatment of giant intracranial aneurysms.

Giant intracranial aneurysms are defined as greater than 25mm in diameter. They share the same surgical challenges and strategies as so-called complex aneurysms, sometimes smaller in size but presenting with similar complex anatomy. The surgical difficulties arise from the size of the sack, the presence of intraluminal thrombus, the thickness of the arterial wall, and the complexity of arterial branching on the neck. Preoperative imaging gathers complementary information from magnetic resonance imaging, computed tomographic angiography, and rotational catheter-based angiography with three-dimensional reconstruction including balloon-test occlusion. The therapeutic decision-making needs a multidisciplinary approach including endovascular, neurosurgical and anesthesiological expertises. The microsurgical treatment needs a step-by-step preoperative planning with anticipation of possible pitfalls and alternative strategies. Classical principles of aneurysm surgery have to be tailored to face the difficulties arising from the size of the sack and from the arterial wall calcifications.

Quality of life one year post-Shiga toxin-producing Escherichia coli O104 infection--a prospective cohort study.

BACKGROUND: In 2011, a major outbreak of hemolytic-uremic syndrome (HUS) and bloody diarrhea related to infections from Shiga toxin-producing Escherichia coli O104 (STEC) occurred in Germany. While previous research has focused on the medical components of this disease, we aimed to investigate the course of health-related quality of life (HrQoL) over 12 months including somatic and psychosocial risk factors. Furthermore, the influence of chronic fatigue (CF) on HrQoL was examined. METHODS: A prospective cohort study with n = 389 patients completing self-report scales at baseline, after 6 months (participation rate: 79%) and after 12 months (participation rate: 77%). The courses of physical and mental HrQoL over the 12 month period were calculated by employing general linear mixed models. KEY RESULTS: While the physical component score of HrQoL reached a score comparable to the general population, the mental component score remained below average 12 months after STEC infection. Female gender, prior psychiatric disorder, and prior traumatic events were risk factors for a worse HrQoL course after 12 months, while social support was identified to be protective. CF was associated with low HrQoL. In addition, the somatic symptom burden remained persistently high. CONCLUSIONS & INFERENCES: Our results show high somatic and psychosocial burden in patients 12 months after STEC infection. We recommend considering the risk factors and protective factors of poor HrQoL early in the treatment of STEC or similar diseases. Patients who are suffering from persisting somatic symptoms, CF, and impaired HrQoL may require specific aftercare.

[Psychosomatic aspects of chronic pelvic pain syndrome. Psychometric results from the pilot phase of an interdisciplinary outpatient clinic]. / Psychosomatische Aspekte des chronischen Unterbauchschmerzsyndroms. Psychometrische Ergebnisse der Pilotphase einer interdisziplinären Sprechstunde.

BACKGROUND: Chronic pelvic pain syndrome (CPPS) presents as a multicausal disorder. Complex interactions of psychological factors with somatic dysfunctions are crucial to the development and maintenance of CPPS. AIM: This study characterized the patient cohort from a psychosomatic perspective. MATERIAL AND METHODS: Subjects with CPPS were recruited from an interdisciplinary CPP outpatient clinic. Sociodemographic data, symptoms (National Institutes of Health Chronic Prostatitis Symptom Index, NIH-CPSI) and pain-related factors (Short Form of the McGill Pain Questionnaire, SF-MPQ) as well as depressive symptoms (Patient Health Questionnaire 9, PHQ-9), anxiety [Generalized Anxiety Disorder 7-item (GAD-7) Scale], the severity of somatic symptoms (PHQ-15) and quality of life (Short Form-12, SF-12) were measured. Additional socioeconomic data were obtained. RESULTS: A total of 50 men and women with a mean disease duration of 5.8 years were included in the study. The disease-related symptom severity and healthcare utilization were high. All psychometric scales showed significantly lower values compared with the general population. A high symptom burden was associated with high psychopathological findings and reduced quality of life. CONCLUSION: The psychopathological comorbidities in subjects with CPPS require specific evidence-based diagnostic and treatment methods to reduce psychopathology and improve quality of life.

Evidence-based chronic heart-failure management programmes: reality or myth?

BACKGROUND: Chronic heart-failure management programmes (CHF-MPs) have become part of standard care for patients with chronic heart failure (CHF). OBJECTIVE: To investigate whether programmes had applied evidence-based expert clinical guidelines to optimise patient outcomes. DESIGN: A prospective cross-sectional survey was used to conduct a national audit. SETTING: Community setting of CHF-MPs for patients postdischarge. SAMPLE: All CHF-MPs operating during 2005-2006 (n=55). Also 10-50 consecutive patients from 48 programmes were recruited (n=1157). MAIN OUTCOME MEASURES: (1) Characteristics and interventions used within each CHF-MP; and (2) characteristics of patients enrolled into these programmes. RESULTS: Overall, there was a disproportionate distribution of CHF-MPs across Australia. Only 6.3% of hospitals nationally provided a CHF-MP. A total of 8000 postdischarge CHF patients (median: 126; IQR: 26-260) were managed via CHF-MPs, representing only 20% of the potential national case load. Significantly, 16% of the caseload comprised patients in functional New York Heart Association Class I with no evidence of these patients having had previous echocardiography to confirm a diagnosis of CHF. Heterogeneity of CHF-MPs in applied models of care was evident, with 70% of CHF-MPs offering a hybrid model (a combination of heart-failure outpatient clinics and home visits), 20% conducting home visits and 16% conducting an extended rehabilitation model of care. Less than half (44%) allowed heart-failure nurses to titrate medications. The main medications that were titrated in these programmes were diuretics (n=23, 96%), ß-blockers (n=17, 71%), ACE inhibitors (ACEIs) (n=14, 58%) and spironolactone (n=9, 38%). CONCLUSION: CHF-MPs are being implemented rapidly throughout Australia. However, many of these programmes do not adhere to expert clinical guidelines for the management of patients with CHF. This poor translation of evidence into practice highlights the inconsistency and questions the quality of health-related outcomes for these patients.

Evidence-based chronic heart failure management programs: reality or myth?

BACKGROUND: Chronic heart failure management programmes (CHF-MPs) have become part of standard care for patients with chronic heart failure (CHF). OBJECTIVE: To investigate whether programmes had applied evidence-based expert clinical guidelines to optimise patient outcomes. DESIGN: Prospective cross-sectional survey was used to conduct a national audit. SETTING: Community setting of CHF-MPs for patients after discharge. SAMPLE: All CHF-MPs operating during 2005-2006 (n = 55). 10-50 consecutive patients from 48 programmes were also recruited (n = 1157). MAIN OUTCOME MEASURES: (1) Characteristics and interventions used within each CHF-MP and (2) characteristics of patients enrolled into these programmes. RESULTS: Overall, there was a disproportionate distribution of CHF-MPs across Australia. Only 6.3% of hospitals nationally provided a CHF-MP. A total of 8000 post-discharge CHF patients (median, 126; IQR, 26-260) were managed via CHF-MPs representing only 20% of the potential national case load. Significantly, 16% of the case load comprised patients in functional New York Heart Association class I with no evidence of these patients having had previous echocardiography to confirm a diagnosis of CHF. Heterogeneity of CHF-MPs in applied models of care was evident with 70% of CHF-MPs offering a hybrid model (a combination of heart failure outpatient clinics and home visits), 20% conducting home visits and 16% an extended rehabilitation model of care. Less than half (44%) allowed heart failure nurses to titrate medications. The main medications that were titrated in these programmes were diuretics (n = 23, 96%), beta-blockers (n = 17, 71%), ACE inhibitors (n = 14, 58%) and spironolactone (n = 9, 38%). CONCLUSION: CHF-MPs are being implemented rapidly throughout Australia. However, many of these programmes do not adhere to expert clinical guidelines for the management of patients with CHF. This poor translation of evidence into practice highlights the inconsistency and questions the quality of health-related outcomes for these patients.

[Systemic treatments of the vasospasm]. / Traitements systémiques du vasospasme.

Cerebral vasospasm, a recognized complication of aneurysmal subarachnoid haemorrhage, can lead to delayed ischaemic neurological deficit, and death. The systematic administration of nimodipine confers a modest but real benefit against delayed ischaemic damage. When vasospasm occurs, triple-H therapy (hypervolaemia, hypertension, and haemodilution) has long been advocated in order to increase flow, but its usefulness remains unclear. Cardiac output optimization using inotropic drugs might also be considered in selected patients. In practice, only correction of volume depletion and induced hypertension (after aneurysm has been secured) can be recommended. In addition, according to phase II randomized trials, promising new treatments for vasospasm or its ischaemic complications include magnesium sulfate, the selective endothelin A-receptor antagonist clazosentan, and statins. The simple and safe profile of prophylactic use of statins appears particularly attractive. However, all these potential candidates need further validation through (on-going) clinical phase III trials.

Symptomatic vasospasm after subarachnoid haemorrhage: assessment of brain damage by diffusion and perfusion-weighted MRI and single-photon emission computed tomography.

Our purpose was to assess the usefulness of diffusion- and perfusion-weighted MRI for the detection of ischaemic brain damage in patients with suspected vasospasm after subarachnoid haemorrhage (SAH). We studied 11 patients admitted with a ruptured aneurysm of the anterior circulation and suspected of intracranial vasospasm on clinical examination and transcranial Doppler sonography (TCD). All were investigated by technetium-hexamethyl-propylene amine oxime (Tc-HMPAO) single photon emission computed tomography (SPECT) and diffusion and perfusion-weighted MRI (DWI, PWI) within 2 weeks of their SAH. Trace images and TTP maps were interpreted by two examiners and compared with clinical and imaging follow-up. PWI revealed an area of slowed flow in seven patients, including four with major and three with minor hypoperfusion on SPECT. In two patients, PWI did not demonstrate any abnormality, while SPECT revealed major hypoperfusion in one and a minor deficit hypoperfusion in the other. Two patients with high signal on DWI had a permanent neurological deficit.

[Follow-up study of head-injured children]. / Devenir de l'enfant traumatisé crânien.

The authors reviewed in a retrospective study 61 cases of severely head injury children who where admitted in the rehabilitation centre to evaluate the outcome 1 and 5 years after the brain injury. Neurologic and neuropsychologic status of children was assessed ad admission, 1 and 5 years later. Duration on intubation and age at time of head trauma were the worst functional prognosis.

Thoughts, feelings, and motivations of bystanders who attempt to resuscitate a stranger: a pilot study.

BACKGROUND: Rates of bystander cardiopulmonary resuscitation remain low nationwide. Possibly, low rates can be explained by examining the reactions of laypersons who attempt to resuscitate a stranger. OBJECTIVE: To examine the thoughts, feelings, and motivations of laypersons who have attempted to resuscitate a stranger. METHOD: Survey methods were used to do a qualitative study of 12 laypersons who had provided bystander resuscitation. A 36-item questionnaire of predominately open-ended questions was used to elicit retrospective information about the laypersons' thoughts, feelings, and motivations during several stages of the resuscitation event. Data were analyzed by using content analysis. RESULTS: Thoughts about the event included curiosity, questioning of personal capability, and recognition of differences between classroom training and real-life events. Feelings included hope, euphoria, pride, relief, satisfaction, hopelessness, doubt, agitation, anger, sadness, and fear. Primary motivations were duty and responsibility, guilt and social pressure, and altruism. All participants reported that they had excellent recall of the event. CONCLUSION: These results provide insight into a population that acts on behalf of the medical community.

Self-care abilities of patients with heart failure.

BACKGROUND: Self-care is difficult for patients with heart failure (HF) because early symptoms are subtle and the treatment regimen is complex. The primary purpose of this study was to describe HF self-care abilities and the difficulties that patients have in achieving success in self-care. A secondary purpose was to compare self-care abilities in patients experienced with HF with those patients who are newly diagnosed. METHODS: Descriptive, cross-sectional, comparative surveys were conducted to assess demographic and clinical factors that may interfere with self-care and lifestyle changes made to accommodate the diagnosis of HF. Symptoms the patients had and self-care responses to those symptoms were assessed by using the Self-Management of Heart Failure questionnaire. RESULTS: The 139 patients were primarily elderly, male, retired, unmarried, and earning less than $20,000 annually. Hearing and eyesight were impaired and most patients were functionally compromised. Most of the group had multiple HF symptoms during the past year, yet their knowledge of the importance of signs and symptoms was poor and many misperceptions were evident. Recognition of changes in signs and symptoms was difficult for most patients, but easier for those more experienced with HF. Experienced patients were more likely to use appropriate self-care remedies than newly diagnosed patients. Few patients were comfortable evaluating the effectiveness of their self-care actions and most had low self-confidence in their ability to perform self-care. CONCLUSIONS: With the low level of self-care ability and the number of difficulties these patients face, it is not surprising that rehospitalization rates remain high. Specific recommendations for the teaching and delivery of care are provided.

Testing a predictive model of what makes a critical thinker.

The goal of nursing education is to help individuals become self-determining, independent thinkers. Cognitive development may be the outcome that best characterizes such a thinker. The purpose of this study was to test a model of cognitive development in which four independent variables--knowledge base, critical thinking skills, critical thinking dispositions, and experience--were used to predict cognitive development. Data were analyzed from 232 practicing registered nurses. Three hierarchical levels of cognitive development were examined: dualism, relativism, and commitment. Critical thinking skill was a significant contributor only to the dualistic level of cognitive development. Critical thinking dispositions contributed to all three levels of cognitive development. Experience contributed only to the commitment level. The results of this study suggest that the development of a critical thinker may require time and experience. These findings can be used to examine current policy regarding the criteria used to evaluate nursing education.

[Recombinant hirudin in neurosurgery]. / Hirudine recombinante en neurochirurgie.

We report the case of a 70-year-old woman with paraplegia resulting from spinal cord compression secondary to an epidural haematoma. Because of an arrhythmia, a mitral valve replacement and the high risk of venous thrombosis, an anticoagulant treatment was introduced postoperatively. The patient having previously developed an type II heparin-induced thrombocytopaenia, a treatment by lepirudine was established successfully.

Comparison of anxiety assessments between clinicians and patients with acute myocardial infarction in cardiac critical care units.

BACKGROUND: Although anxiety is common after acute myocardial infarction and can adversely affect physical recovery, it is not part of the routine clinical assessment of patients with myocardial infarction. Furthermore, evidence suggests that patients and clinicians differ significantly in their assessments of patients' anxiety levels. OBJECTIVES: To determine the extent to which clinicians assess anxiety in patients with acute myocardial infarction and to compare patients' self-ratings with their clinicians' assessments. METHODS: In a prospective, descriptive study, 101 patients used the Spielberger State Anxiety Index to assess their anxiety during the first 48 hours after admission for acute myocardial infarction. Patients' scores were compared with nurses' and physicians' assessments of the patients' anxiety as reported in the medical record. RESULTS: Only 45 patients (45%) had anxiety assessments noted in the record. Of those 45, 26 patients (58%) were described simply as anxious without any further description of the level of anxiety. Eleven (24%) of those 45 patients had behaviors of anxiety recorded, again without any indication of the level of anxiety. No association between patients' self-assessments and their clinicians' assessments was apparent (lambda = .03; P > .05). CONCLUSIONS: Anxiety was not routinely assessed, despite nearly half the patients reporting moderate to extreme anxiety when asked. When clinicians assessed anxiety, their assessments did not match patients' self-ratings of anxiety. A simple, easy-to-use instrument for discriminating levels of anxiety is needed.

Predictors of self-care in persons with heart failure.

OBJECTIVE: The objective of this study was to test a model of individual patient characteristics, covering symptom severity, comorbidity, social support, education, age, socioeconomic status, and gender, derived from Connelly's Model of Self-Care in Chronic Illness as predictors of self-care in heart failure. DESIGN: This was a nonexperimental correlational study. SETTING: The study took place in 6 hospitals in southern California. PATIENTS: The study included 209 patients diagnosed with heart failure by their physicians. The typical study participant was age 73 years, Class III, married, grade-school educated, and earning an income of less than $20,000 per year. The genders were almost equally represented. OUTCOME MEASURE: Self-care was measured by the Evaluating the Change subscale of the Self-Management of Heart Failure Instrument. RESULTS: The model of 7 variables, analyzed by using multiple regression analysis, explained 10.3% of the variance in self-care. Only 2 of the variables were significant predictors of self-care: education (P =.009) and symptom severity (P =.046); 89.7% of the variance remained unexplained. CONCLUSIONS: Persons with higher education and those who are symptomatic may be more likely to engage in self-care than those who are poorly educated or asymptomatic. Further research is needed to confirm these Results and identify other predictors of self-care.

The challenges of conducting clinical research: one research team's experiences.

Conducting clinical research is an exciting and a rewarding endeavor. Each project is unique and, because of this uniqueness, research studies require considerable planning. Regardless of all the upfront planning, challenges will occur throughout the life of the study. Clinical research projects are rife with obstacles that range from the lack of administrative and physician support to subject attrition. Some of the challenges, such as subject dropout, are not unexpected, whereas other unanticipated issues can blindside a research team. This case study examines several such challenges experienced in one longitudinal study and presents the solutions engineered by the research team to keep the project on track.

Differences between men and women in anxiety early after acute myocardial infarction.

BACKGROUND: Anxiety after acute myocardial infarction influences both short- and long-term recovery. Therefore, determining specific subgroups of patients who have relatively higher anxiety levels is important. Published findings about gender differences in anxiety after acute myocardial infarction are conflicting. OBJECTIVES: To determine whether gender differences in anxiety after acute myocardial infarction exist and whether any of the sociodemographic and clinical variables that often differ between men and women with acute myocardial infarction interact with gender to influence anxiety. METHODS: A total of 424 patients with confirmed acute myocardial infarction were enrolled in this multicenter prospective study. Patients' anxiety level was measured within 72 hours of their arrival at the hospital by using the State Anxiety Inventory and the Brief Symptom Inventory. RESULTS: Women had significantly higher anxiety than did men according to both the State Anxiety Inventory (42 +/- 12.9 vs 37.7 +/- 12.5; P = .001) and the Brief Symptom Inventory (0.83 +/- 0.97 vs 0.63 +/- 0.71; P = .02). Of the sociodemographic and clinical variables examined, only marital status and income significantly interacted with gender to influence anxiety. Married women had higher anxiety than did single and widowed women, and married men had lower anxiety than did single men. Women with lower income had higher anxiety than did women with higher income; income was not related to anxiety in men. CONCLUSION: Women report significantly greater anxiety early after acute myocardial infarction than men do. Women's greater anxiety may be partially explained by marital status and lower income at the time of the infarction.

Development and testing of a clinical tool measuring self-management of heart failure.

BACKGROUND: Self-management is a primary goal of treatment for heart failure. Yet no measure of self-management in this patient group currently exists. OBJECTIVES: To develop a clinically useful measure of the abilities of patients with heart failure to manage their disease. Self-management in this context was defined as a cognitive decision-making process undertaken in response to signs and symptoms of heart failure. A panel of experts agreed that the process involved 4 distinct stages: recognizing a change, evaluating the change, implementing a treatment strategy, and evaluating the treatment. The tool was developed to reflect this process. METHODS: Face validity of the process model was assessed in a sample of 25 patients with heart failure and used to develop a 65-item tool with 6 subscales. The subscales measure the 4 stages as well as the patients' ease in evaluating the signs and symptoms and their self-efficacy. The tool was pilot tested with 2 samples of patients with heart failure (N = 17; N = 129). Psychometrics of the final tool were then tested in a sample of 127 patients with heart failure. RESULTS: Face and content validity of the tool were demonstrated adequately through this study. Internal consistency scores of the 6 subscales of the Self-Management of Heart Failure instrument ranged from 0.79 (ease of evaluating treatment) to 0.92 (evaluating the change). Reliability could not be calculated for 1 subscale (evaluating the treatment) because of missing data that resulted from patients skipping sections because they had not experienced a symptom. CONCLUSION: Clinicians interested in evaluating the self-management abilities of their patients with heart failure are encouraged to use this tool and to contribute to additional testing.