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Although preventive health and therapeutics have benefited from advances in drug development and device innovation, translating these evidence-based treatments into real-world practice remains challenging.
The current integrative review aims to identify facilitators and barriers and perceptions in delivering and managing injectable therapies from patient perspectives.
An integrative review was conducted in the databases of PubMed, CINAHL, PsycINFO and Cochrane. Keywords were used “Injectable therapy”, “IV therapy”, “SC therapy”, “long term injectable therapies”, “self-administered injectable therapy”, “patients”, “caregivers”, “family”, “carers”, “facilitators”, “barriers”, “perspectives”, “needs”, “expectations”, “chronic disease”, “cardiovascular disease” linked with the words “OR” and “AND”. The search was limited from January 2000 to July 2019. Inclusion and exclusion criteria were used.
Twenty studies were identified from the literature search. Studies followed qualitative, quantitative methodology and mixed methods. Facilitators included: health improvement, prevention of disease complications, taking control of their disease, effectiveness of the medication and convenience in management. Barriers included: fear of needles, insulin will cause harm, poor perception of the benefits of injectable therapies on their quality of life, inconvenience in self-management, social stigma, impact on daily living, financial barriers, lack of education. Perceptions included: ‘treatment of last resort’, ‘life becomes less flexible’, ‘injectables were punishment/restriction’, ‘personal failure of self-management’.
Evidence shows how to create effective communication and shared decision-making relationships to provide best possible care to patients who need injectable therapy and support for self-management. Future research might help guide response to the fears and barriers of the patients using patients’ perspectives.
Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members’ psychosocial support needs are often unmet.
This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs.
The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members (
Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning.
YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.
In prevention, sedentary behaviour and physical activity have been associated with risk of cardiovascular disease and mortality. Less is known about associations with utilization of hospital care.
To investigate whether physical activity level and sedentary behaviour prior to cardiac ward admission can predict utilization of hospital care and mortality among patients with cardiovascular disease.
Longitudinal observational study including 1148 patients admitted and treated in cardiac wards in two hospitals. Subjective reports of physical activity levels and sedentary time prior to admission were collected during inpatient care and categorized as low, medium or high. The associations between physical activity level and sedentary time with hospital stay, readmission and mortality were analysed using linear, logistic and Cox regressions.
Median hospital stay was 2.1 days. One higher step in the physical activity level, or lower sedentary time, was related to an approximately 0.9 days shorter hospital stay. Sixty per cent of patients were readmitted to hospital. The risk of being readmitted was lower for individuals reporting high physical activity and low sedentary time (odds ratios ranging between 0.44 and 0.91). A total of 200 deaths occurred during the study. Mortality was lower among those with high and medium physical activity levels and low sedentary time (hazard ratios ranging between 0.36 and 0.90).
Both physical activity level and sedentary time during the period preceding hospitalization for cardiac events were predictors of hospital utilization and mortality. This highlights the prognostic value of assessing patients’ physical activity and sedentary behaviour.
The aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart failure.
This cross-sectional study investigated 100 heart failure patients (40 women, 60 men; median age 79 years) within the first few days of their hospitalisation by applying the integrated palliative care outcome scale (3-day recall period) and two additional self-developed questions about the suitability and comprehensibility of the integrated palliative care outcome scale. Clinically relevant somatic and psycho-emotional symptoms were reported very frequently (approximately 75% each), followed by communicational needs or practical issues. Ninety-five per cent of patients thought the integrated palliative care outcome scale very easy to understand, and 91% judged the integrated palliative care outcome scale suitable to assess palliative care needs.
The integrated palliative care outcome scale was well accepted by hospitalised patients with heart failure and identified a high burden of both physical and psycho-emotional symptoms. Screening for palliative care has to consider patients and their relatives alike, and should be part of a comprehensive care concept jointly integrated into clinical routine by primary and specialised palliative care teams.
Palliative care can improve outcomes for patients with advanced chronic heart failure and their families, but timely recognition of palliative care needs remains challenging.
The aim of this study was to identify characteristics of a tool to assess palliative care needs in chronic heart failure that are needed for successful implementation, according to patients, their family and healthcare professionals in The Netherlands.
Explorative qualitative study, part of the project ‘Identification of patients with HeARt failure with PC needs’ (I-HARP), focus groups and individual interviews were held with healthcare professionals, patients with chronic heart failure, and family members. Data were analysed using the Consolidated Framework for Implementation Research.
A total of 13 patients, 10 family members and 26 healthcare professionals participated. Direct-content analysis revealed desired tool characteristics for successful implementation in four constructs: relative advantage, adaptability, complexity, and design quality and packaging. Healthcare professionals indicated that a tool should increase awareness, understanding and knowledge concerning palliative care needs. A tool needs to: be adaptable to different disease stages, facilitate early identification of palliative care needs and ease open conversations about palliative care. The complexity of chronic heart failure should be considered in a personalized approach.
The current study revealed the characteristics of a tool for timely identification of palliative care needs in chronic heart failure needed for successful implementation. The next steps will be to define the content of the tool, followed by development of a preliminary version and iterative testing of this version by the different stakeholders.
To understand better the success of self-management interventions and to enable tailoring of such interventions at specific subgroups of patients, the nurse-led Activate intervention is developed targeting one component of self-management (physical activity) in a heterogeneous subgroup (patients at risk of cardiovascular disease) in Dutch primary care.
The aim of this study was to evaluate the effectiveness of the Activate intervention and identifying which patient-related characteristics modify the effect.
A two-armed cluster-randomised controlled trial was conducted comparing the intervention with care as usual. The intervention consisted of four nurse-led behaviour change consultations within a 3-month period. Data were collected at baseline, 3 months and 6 months. Primary outcome was the daily amount of moderate to vigorous physical activity at 6 months. Secondary outcomes included sedentary behaviour, self-efficacy for physical activity, patient activation for self-management and health status. Prespecified effect modifiers were age, body mass index, level of education, social support, depression, patient provider relationship and baseline physical activity.
Thirty-one general practices (
The Activate intervention did not improve patients’ physical activity and secondary outcomes in primary care patients at risk of cardiovascular disease. To understand the results, the intervention fidelity and active components for effective self-management require further investigation.
Trial registration: ClinicalTrials.gov NCT02725203.
The population of adults with congenital heart disease (CHD) has increased dramatically with a high prevalence of acquired cardiac and non-cardiac comorbidities. However, the relationship among congenital heart disease, physical comorbidities, and psychological health in this population is not well studied.
The purpose of this study was to investigate (a) the association between adult congenital heart disease and the occurrence of depression and (b) whether physical comorbidities mediated the association between congenital heart disease and the occurrence of depression.
This retrospective cohort study was followed from 1 January 2010–31 December 2013, based on the data from the National Health Insurance Research Database 2010 in Taiwan. We used mediation analysis in survival data to assess the mediated effect. The hazard ratios were adjusted by age, sex, area of residence, and estimated propensity scores.
We recruited 2122 adult congenital heart disease patients and 8488 matched controls. Nearly half of patients diagnosed with simple congenital heart disease, 39.0% had complex congenital heart disease, and 11.2% had unclassified congenital heart disease. Adult congenital heart disease patients had a significantly higher risk of depression than matched controls (adjusted hazard ratio = 1.43 and 1.48, for all and complex congenital heart disease, respectively,
Helping patients to prevent psychological and physical acquired disease is imperative. Coronary artery disease is a potent mediator between congenital heart disease and depression, especially for patients with complex congenital heart disease.
A relation to stress and stressful triggers is often, but not always, described in patients with Takotsubo syndrome. Few studies have focused on patients’ self-rated stress in combination with qualitative experiences of stress in Takotsubo syndrome.
The aim of this study was to describe stress before and after the onset of Takotsubo syndrome.
Twenty patients were recruited from five major hospitals in Stockholm, Sweden between December 2014 and November 2018. A mixed methods design was used containing the validated questionnaire, perceived stress scale (PSS-14) filled in at baseline and at a 6 and 12-month follow-up, respectively. Qualitative interviews were made at the 6-month follow-up.
Self-rated stress, measured by the perceived stress scale, showed stress levels above the cut-off value of 25, at the onset of Takotsubo syndrome (median 30.5). Stress had decreased significantly at the 12-month follow-up (median 20.5,
Patients with Takotsubo syndrome reported long-term stress sometimes with an acute stress trigger before the onset of Takotsubo syndrome. Stress decreased over time but remained high for a considerable number of patients. Despite reflection over stress and attempts to deal with stress many were still affected after 6 months. New treatment options are needed for patients with Takotsubo syndrome.
It is well-established that heart failure has a negative impact on quality of life. However, little is known about patient-related predictors of health-related quality of life, anxiety and depression, symptoms and illness perception among patients with heart failure.
To study the association between patient-related predictors and patient-reported outcome measures at discharge from hospital in a cohort of patients with heart failure.
We used data from 1506 patients with heart failure, participating in the national DenHeart Survey of patient-reported outcome measures in patients with heart disease. The potential patient-related predictors included demographic, administrative, clinical and socioeconomic factors. The patient-reported outcome measures included six questionnaires: the Short Form-12, the Hospital Anxiety and Depression Scale, the EuroQol five-dimensional, five-level questionnaire, the HeartQoL, the Brief Illness Perception Questionnaire and the Edmonton Symptom Assessment Scale. Data were linked to national patient registry data and medical records. We performed multivariable linear and logistic regression analyses.
In adjusted linear regression analyses we found that a length of hospital stay of >2 days was associated with worse scores across questionnaires, except for the Brief Illness Perception Questionnaire. Higher comorbidity level was associated with worse scores across all questionnaires, whereas low social support was associated with worse scores across questionnaires, except for the physical domain of the Short Form-12 and the HeartQoL global score.
This study identified length of hospital stay > 2 days, a higher comorbidity level and low social support to be associated with worse scores across questionnaires at discharge from a cardiac-related hospitalisation in patients with heart failure.
True causality is impossible to capture with observational studies. Nevertheless, within the boundaries of observational studies, researchers can follow three steps to answer causal questions in the most optimal way possible. Researchers must: (a) repeatedly assess the same constructs over time in a specific sample; (b) consider the temporal sequence of effects between constructs; and (c) use an analytical strategy that distinguishes within from between-person effects. In this context, it is demonstrated how the random intercepts cross-lagged panel model can be a useful statistical technique. A real-life example of the relationship between loneliness and quality of life in adolescents with congenital heart disease is provided to show how the model can be practically implemented.
