The role of illness perceptions in delayed care-seeking in heart failure: A mixed-methods study.

BACKGROUND: Unclear illness perceptions are common in heart failure. The self-regulation model of illness behaviour highlights factors that may impact how people with chronic illness choose to cope with or manage their condition and has been used to study pre-hospital delay for stroke and acute myocardial infarction. The principles of self-regulation can be applied in heart failure to help illuminate the link between unclear illness perceptions and sub-optimal symptom self-management. OBJECTIVE: Informed by the self-regulation model of illness behaviour, this study examines the role of illness perceptions in coping responses that lead to delayed care-seeking for heart failure symptoms. DESIGN: Mixed-methods phenomenological study. SETTING(S): Quaternary referral hospital - centre of excellence for cardiovascular care and heart transplantation. PARTICIPANTS: Seventy-two symptomatic patients with heart failure participated in a survey assessing illness perceptions. A subset of fifteen individuals was invited to participate in semi-structured interviews. METHODS: Illness perceptions were assessed using the Brief Illness Perception Questionnaire. In-depth semi-structured interviews were conducted to elicit previous care-seeking experiences and decision-making that led to a passive, or active coping response to worsening symptoms. Descriptive statistics were used to report questionnaire findings, and open-ended responses were grouped into descriptive categories. Interpretative phenomenological analysis was undertaken on interview transcripts. RESULTS: Participants perceived little personal control over their condition and mostly attributed heart failure to lifestyle factors such as diet and lack of activity. Cognitive dissonance between perceived self-identity and heart failure-identity led to a highly emotional response which drove coping towards avoidance strategies and denial. CONCLUSIONS: This study demonstrates the use of the principles of self-regulation in heart failure and offers a framework to understand how patient representations and emotional responses can inform behaviour in illness. Findings highlight the value of empowering patients to take control of their health and the need to help align values (e.g. independence) with behaviours (e.g. actively addressing problems) to facilitate optimal symptom self-management.

Feasibility of Integrating MEditatioN inTO heaRt Disease (the MENTOR Study): A Phase II Randomized Controlled Trial.

BACKGROUND: Comorbid depression and/or anxiety symptoms occur in 25% of patients attending cardiac rehabilitation (CR) programs and are associated with poorer prognosis. There is a need to evaluate psychological interventions, including meditation, that have potential to improve psychological health in CR programs. AIMS: The aim of this study was to determine the feasibility and acceptability of integrating a meditation intervention into an existing Australian CR program for the reduction of depression and anxiety symptoms. METHODS: This was a mixed-methods feasibility randomized controlled trial. Thirty-one patients with CVD and, at a minimum, mild depression and/or anxiety symptoms were randomized to meditation and standard CR or to standard CR alone. A 16-minute guided group meditation was delivered face-to-face once a week for 6 weeks, with daily self-guided meditation practice between sessions. Feasibility outcomes included screening, recruitment, and retention. Semistructured interviews of patients' (n = 10) and health professionals' (n = 18) perspectives of intervention participation and delivery were undertaken to assess acceptability. Between-group differences in depression, anxiety, stress, self-efficacy for mindfulness, and health status at 6 and 12 weeks were also assessed. RESULTS AND CONCLUSION: Meditation was considered feasible, with 83% (12/15) of the intervention group completing an average of 3.13 (SD, 2.56) out of 6 group meditation sessions and 5.28 (SD, 8.50) self-guided sessions. Meditation was considered acceptable by patients, clinicians, and health managers. Between-group differences in the number of CR sessions completed favored the intervention group in per-protocol analyses (intervention group vs control group, 12 vs 9 sessions; P = .014), which suggests that meditation may be useful to improve patients' adherence to exercise-based CR program.

Comparison of six frailty instruments in adults with heart failure: a prospective cohort pilot study.

AIMS: To compare the frailty prevalence and predictive performance of six frailty instruments in adults with heart failure and determine the feasibility of study methods. METHODS AND RESULTS: Prospective cohort pilot study. Adults aged 18 years or older with a confirmed diagnosis of heart failure in Sydney, New South Wales, Australia. The Frailty Phenotype; the Survey of Health, Ageing, and Retirement in Europe Frailty Instrument (SHARE-FI); St Vincent's Frailty instrument; St Vincent's Frailty instrument plus cognition and mood; The Fatigue, Resistance, Ambulation, Illnesses, and Loss of Weight (FRAIL) scale; and the Deficit Accumulation Index (DAI) were compared. Multiple logistic regression was used to develop six frailty instrument models to evaluate the association between each frailty instrument and composite all-cause rehospitalization and mortality at 12 months. One hundred and thirty-one patients were included with a mean age of 54 [± 14(SD)]. Frailty prevalence ranged from 33 to 81%. All instruments except one (the FRAIL scale) appeared to signal an increased odds of rehospitalization and/or mortality, yet these results were non-significant. The six frailty instrument models displayed sensitivity between 88-92% and C-statistic values of 0.71-0.73, suggesting satisfactory discrimination. CONCLUSION: The prevalence of frailty varied across six frailty instruments yet was in the higher range despite a 'younger' heart failure cohort. Further research is required to confirm the psychometric properties of these instruments for routine clinical use in an adequately powered and more diverse heart failure cohort.

Clinician Estimates of Frailty Compared to Formal Frailty Assessment in Adults With Heart Failure: A Cross-Sectional Analysis.

BACKGROUND: Frailty assessment is recommended for patients with heart failure. Despite the availability of instruments to assess frailty, there are no clear recommendations regarding the optimal instrument to use in a heart failure context. This ambiguity combined with a lack of education and resources, often leads clinicians to rely on subjective estimates of frailty, such as 'the end-of-the-bed' or 'eyeball' test. AIM: To examine the association between clinician-estimated frailty and formal frailty assessment in adults with heart failure. METHODS: Cross-sectional analysis of the FRAilty MEasurement in Heart Failure (FRAME-HF) study. PARTICIPANTS: (1) Adults aged ≥18 years in the outpatient heart failure clinic and cardiology ward; (2) and cardiovascular clinicians (nurses, physicians, and allied-health professionals). Following participant recruitment, cardiovascular clinicians were asked to rate the participant's frailty status based on their routine clinical assessment as either: frail, pre-frail, or non-frail, which was then compared to a formal frailty assessment using a modified version of the Frailty Phenotype. The association between clinician-estimated frailty and formal frailty assessment were examined using a weighted Kappa statistic and Spearman's correlation coefficient. RESULTS: A total of 75 patients and 39 clinicians were recruited, producing 194 paired frailty assessments. Mean age of the patients was 54 (±13) years. Correlation of pooled clinician-estimated frailty to formal frailty was fair (0.52, p=0.00). Correlation was highest between allied-health estimated frailty and formal frailty (0.70, p=0.00). Agreement between pooled clinician-estimated frailty and formal frailty was fair (0.33) and was highest between allied health-estimated frailty and formal frailty (0.45). CONCLUSION: Subjective clinician-estimated frailty is not a reliable replacement for formal frailty assessment in adults with heart failure, underscoring the need for assessment using a valid and reliable instrument.

The relationship between neurocognitive performance and HRV parameters in nurses and non-healthcare participants.

Nurses represent the largest sector of the healthcare workforce, and it is established that they are faced with ongoing physical and mental demands that leave many continuously stressed. In turn, this chronic stress may affect cardiac autonomic activity, which can be non-invasively evaluated using heart rate variability (HRV). The association between neurocognitive parameters during acute stress situations and HRV has not been previously explored in nurses compared to non-nurses and such, our study aimed to assess these differences. Neurocognitive data were obtained using the Mini-Mental State Examination and Cognistat psychometric questionnaires. ECG-derived HRV parameters were acquired during the Trier Social Stress Test. Between-group differences were found in domain-specific cognitive performance for the similarities (p = .03), and judgment (p = .002) domains and in the following HRV parameters: SDNNbaseline, (p = .004), LFpreparation (p = .002), SDNNpreparation (p = .002), HFpreparation (p = .02), and TPpreparation (p = .003). Negative correlations were found between HF power and domain-specific cognitive performance in nurses. In contrast, both negative and positive correlations were found between HRV and domain-specific cognitive performance in the non-nurse group. The current findings highlight the prospective use of autonomic HRV markers in relation to cognitive performance while building a relationship between autonomic dysfunction and cognition.

Frailty Measures in Patients Listed for Lung Transplantation.

BACKGROUND: The study aimed to determine whether the addition of cognitive impairment, depression, or both, to the assessment of physical frailty (PF) is associated with the risk of lung transplant (LTX) waitlist mortality. METHODS: Since March 2013, all patients referred for LTX evaluation underwent PF assessment. Cognition was assessed using the Montreal Cognitive Assessment and depression assessed using the Depression in Medical Illness questionnaire. We assessed the association of 4 composite frailty measures: PF ≥3 of 5 = frail, cognitive frailty (CogF ≥3 of 6 = frail), depressive frailty (DepF ≥3 of 6 = frail), and combined frailty (ComF ≥3 of 7 = frail) with waitlist mortality. RESULTS: The prevalence of PF was 78 (22%), CogF 100 (28%), DepF 105 (29%), and ComF 124 (34%). Waitlist survival in the non-PF group was 94% ± 2% versus 71% ± 7% in the PF group (P < 0.001). Cox proportional hazards regression analysis demonstrated that PF (adjusted hazard ratio [HR], 4.88; 95% confidence interval [CI], 2.06-11.56), mild cognitive impairment (adjusted HR, 3.03; 95% CI, 1.05-8.78), and hypoalbuminemia (adjusted HR, 0.89; 95% CI, 0.82-0.97) were independent predictors of waitlist mortality. There was no significant difference in the area under the curve of the 4 frailty measures. CONCLUSIONS: The addition of cognitive function and depression variables to the PF assessment increased the number of patients classified as frail. However, the addition of these variables does not strengthen the association with LTX waitlist mortality compared with the PF measure.

The Role of Lifestyle and Cardiovascular Risk Factors in Dropout From an Australian Cardiac Rehabilitation Program. A Longitudinal Cohort Study.

BACKGROUND: Cardiac rehabilitation (CR) programs reduce the risk of further cardiac events and improve the ability of people living with cardiovascular disease to manage their symptoms. However, many people who experience a cardiac event do not attend or fail to complete their CR program. Little is known about the characteristics of people who drop out compared to those who complete CR. AIMS: To identify subgroups of patients attending a cardiac rehabilitation program who are more likely to dropout prior to final assessment by (1) calculating the dropout rate from the program, (2) quantifying the association between dropout and socio-demographic, lifestyle, and cardiovascular risk factors, and (3) identifying independent predictors of dropout. METHODS: The study population is from a large metropolitan teaching hospital in Sydney, Australia, and consists of all participants consecutively enrolled in an outpatient CR program between 2006 and 2017. Items assessed included diagnoses and co-morbidities, quality of life (SF-36), psychological health (DASS-21), lifestyle factors and physical assessment. Dropout was defined as failure to complete the outpatient CR program and post CR assessment. RESULTS: Of the 3,350 patients enrolled in the CR program, 784 (23.4%; 95%CI: 22.0-24.9%) dropped out prior to completion. The independent predictors of dropout were smoking (OR 2.4; 95%CI: 1.9-3.0), being separated or divorced (OR 2.0; 95%CI: 1.5-2.6), younger age (<55 years) (OR 1.9; 95%CI: 1.6-2.4), obesity (OR 1.6; 95%CI: 1.3-2.0), diabetes (OR 1.6; 95%CI: 1.3-2.0), sedentary lifestyle (OR 1.3; 95%CI: 1.1-1.6) and depressive symptoms (OR 1.3; 95%CI: 1.1-1.6). CONCLUSION: To improve the CR program completion rate, clinicians need to consider the impact of socio-demographic, lifestyle, and cardiovascular risk factors on their patients' ability to complete CR. Tailored strategies which target the independent predictors of dropout are required to promote adherence to CR programs and thereby potentially reduce long-term cardiovascular risk.

Attitudes and practices towards palliative care in chronic heart failure: a survey of cardiovascular nurses and physicians.

BACKGROUND: Heart failure is a chronic condition with various implications for individuals and families. Although the importance of implementing palliative care is recommended in best practice guidelines, implementation strategies are less clear. AIMS: This study sought to; (1) determine Australian and New Zealand cardiovascular nurses and physicians' end of life care attitudes and specialist palliative care referral in heart failure and; (2) determine self-reported delivery of supportive care and attitudes towards service names. METHODS: An electronic survey was emailed to members of four peak bodies and professional networks. Participants were also recruited through social media. Paper-based versions of the survey were completed by attendees of the 66th Cardiac Society of Australia and New Zealand Annual Scientific Meeting, August 2018. FINDINGS: There were 113 completed responses included in the analyses. Participants were nurses (n = 75), physicians (n = 32) and allied health professionals (n = 4). Most (67%) reported they were comfortable with providing end of life care; however, fewer respondents agreed they received support for their dying patients and one-third experienced a sense of failure when heart failure progressed. Most (84-100%) participants agreed they would refer a heart failure patient later in the illness trajectory. There was a more favourable attitude towards the service name 'supportive care' than to 'palliative care'. CONCLUSION: Comfort with end of life discussions is encouraging as it may lead to a greater likelihood of planning future care and identifying palliative care needs. Peer support and supervision may be useful for addressing feelings of failure. The use of needs-based assessment tools, adopting the service name 'supportive care' and further research focusing on primary palliative team-based approach is required to improve palliative care access. IMPACT STATEMENT: Cardiovascular nurses and physicians are comfortable providing end of life care, but referrals to palliative care in the later stages of heart failure persists.

A single educational intervention on heart failure self-care: Extended follow-up from a multisite randomized controlled trial.

BACKGROUND: Heart failure outcomes remain poor, and little is known about the causes and predictors of these outcomes in Lebanon. AIM: The purpose of this article is to report the causes and predictors of the 6- and 12-month readmission and mortality of previously recruited patients to the Family focused Approach to iMprove Heart Failure care In LebanonQualitY intervention (FAMILY) study. METHODS: A multi-site block randomized controlled trial in three tertiary medical centers in Beirut. Initially, participants were randomized to either the control or the intervention group. The latter group, with their family caregivers, received heart failure self-care resources and an educational intervention on self-care and symptom management during their index admission. Participants from the FAMILY study were followed up with through phone calls for readmission and mortality at 6 and 12 months following their hospital discharge. RESULTS: A total of 218 (85%) patients were followed up with for this evaluation. There was a significant difference between the intervention group and the control group in terms of mortality at 6 months (n=18 (16%) versus n=36 (33%); p<0.05) and 12 months (n=29 (26%) versus n=45 (42%); p<0.05) post the index discharge. Mortality at 6 and 12 months was associated with aging, lower body mass index scores and readmission at 30 days post the index admission. Results of a logistic regression for mortality at 6 months showed hypertensive etiology of heart failure and 30-day readmission to be the only significant predictors. CONCLUSION: A single session intervention was associated with lower mortality, even after an extended period of time, possibly mediated by other variables. Future studies should be powered for such outcomes while also addressing the cultural needs and literacy levels of the patients using multi-session trials and more frequent follow-ups.

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure.

PURPOSE: Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies. METHODS: Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman's rank tests, systematic bias was examined with Bland-Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student t-tests, analysis of variance and regression. RESULTS: There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (r = 0.38; p < .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54; p = 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap. CONCLUSION: Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.

Rationale for targeted self-management strategies for breathlessness in heart failure.

To provide a conceptual rationale for targeted self-management strategies for breathlessness in chronic heart failure. Breathlessness is a defining symptom of chronic heart failure and is the primary cause for hospital readmissions and emergency room visits, resulting in extensive health care utilization. Chronic breathlessness, punctuated by acute physiological decompensation, is a sentinel symptom of the heart failure syndrome and often intensifies towards the end of life. Drawing upon evidence-based guidelines, physiological mechanisms and existing conceptual models for the management of breathlessness is proposed. Key elements of this model include adherence to evidence-based approaches (pharmacological and non-pharmacological management to optimize heart failure treatment), self-monitoring of symptoms, identification of modifiable factors (such as fluid overload), and targeted strategies for breathlessness including distraction and gas flow. Self-management is an essential component in heart failure management which could positively influences health outcomes and quality of life. Refining programs to focus on breathlessness may have the potential to reduce symptom burden and improve quality of life.

A RandomisEd ControLled TrIal of ChEwing Gum to RelieVE Thirst in Chronic Heart Failure (RELIEVE-CHF).

BACKGROUND: Thirst is a common and troublesome symptom of patients with chronic heart failure (CHF). To date, there are no interventions to help alleviate thirst in this cohort. Chewing gum is a novel intervention, which has been tested in people undergoing haemodialysis, also prescribed with a fluid restricted therapy. The aim of this study was to determine the effect of chewing gum on the level of thirst in the short-term (average of 24 hours each day for 4 days) and in the longer-term (Days 7, 14 and 28) individuals with CHF. METHODS: Seventy-one (71) individuals with CHF on oral loop diuretics were randomised to chewing gum (n=36) or control (n=35) for 2 weeks. Both groups were assessed for their level of thirst at Days 1-4, 7, 14 and 28. RESULTS: Significant improvements in the level of thirst of those who received chewing gum compared to the control group at Day 4 (p=0.04) and Day 14 (p=0.02) were observed. CONCLUSION: Chewing gum provided relief from thirst in the short-term and in the longer term. This trial provides important information to inform future clinical trials on ways to relieve thirst.

Electroencephalographic prediction of global and domain specific cognitive performance of clinically active Australian Nurses.

OBJECTIVE: To investigate the relationship between EEG activity and the global and domain specific cognitive performance of healthy nurses, and determine the predictive capabilities of these relationships. APPROACH: Sixty-four nurses were recruited for the present study, and data from 61 were utilised in the present analysis. Global and domain specific cognitive performance of each participant was assessed psychometrically using the Mini-mental state exam and the Cognistat, and a 32-lead monopolar EEG was recorded during a resting baseline phase and an active phase in which participants completed the Stroop test. MAIN RESULTS: Global cognitive performance was successfully predicted (81%-85% of variance) by a combination of fast wave activity variables in the alpha, beta and theta frequency bands. Interestingly, predicting domain specific performance had varying degrees of success (42%-99% of the variance predicted) and relied on combinations of both slow and fast wave activity, with delta and gamma activity predicting attention performance; delta, theta, and gamma activity predicting memory performance; and delta and beta variables predicting judgement performance. SIGNIFICANCE: Global and domain specific cognitive performance of Australian nurses may be predicted with varying degrees of success by a unique combination of EEG variables. These proposed models image transitory cognitive declines and as such may prove useful in the prediction of early cognitive impairment, and may enable better diagnosis, and management of cognitive impairment.

The Lebanese Heart Failure Snapshot: A National Presentation of Acute Heart Failure Admissions.

PURPOSE: The purpose of this prospective evaluation is to document in-hospital management and discharge trends of patients presented for acute heart failure. DESIGN: A prospective evaluation of the patients presented for heart failure exacerbation at eight sites over 1 month using the method of the New South Wales Heart Failure Snapshot. METHODS: Trained personnel situated at each of the study sites recruited eligible patients to the study and collected data on their sociodemographic characteristics, clinical presentation, self-care, frailty, and depression. FINDINGS: Eight sites, out of the 27 contacted, agreed to participate in this study. A total of 137 admissions were reported in the 1-month time window. Mean age was 72 (SD = 13) years and the majority were female (52%). More than half (n = 60%) had heart failure reduced ejection fraction with a mean ejection fraction of 41%. The mean Charlson Comorbidity Index score was four with hypertension (80%) and diabetes (56%) being the most frequent. The majority were frail (86%), self-care mean scores were low; self-care maintenance (29), self-care management (48) and self-care confidence (42). The mean depression score was 14 indicating major depression. In reference to international guidelines recommendations, hospital administered medications and discharge medications were suboptimal. Some items of the discharge education recommended by the international guidelines were provided to 84% of the patients but none of the patients received the complete items of the discharge education. CONCLUSIONS: The snapshot revealed that patients admitted for acute heart failure were frail with high levels of illiteracy and low self-care scores. Despite these findings, these patients were not provided with complete discharge education in reference to the international guidelines. Additionally, when provided, discharge education was inconsistent across the study sites. This study highlights the need for enlisting complete education as part of the discharge process, in addition to abidance to the guidelines in prescribing medication. The study draws major implications for nursing practice, research and policy. CLINICAL RELEVANCE: Literacy among patients with heart failure is low and should be addressed in educational intervention to improve outcomes. Discharge education is under practiced across the country and should be implemented in accordance with the international guidelines.

Reversibility of Frailty after Lung Transplantation.

BACKGROUND: Frailty contributes to increased morbidity and mortality in patients referred for and undergoing lung transplantation (LTX). The study aim was to determine if frailty is reversible after LTX in those classified as frail at LTX evaluation. METHODS: Consecutive LTX recipients were included. All patients underwent modified physical frailty assessment during LTX evaluation. For patients assessed as frail, frailty was reassessed on completion of the post-LTX rehabilitation program. Frailty was defined by the presence of ≥ 3 domains of the modified Fried Frailty Phenotype (mFFP). RESULTS: We performed 166 lung transplants (frail patients, n = 27, 16%). Eighteen of the 27 frail patients have undergone frailty reassessment. Eight frail patients died, and one interstate recipient did not return for reassessment. In the 18 (66%) patients reassessed, there was an overall reduction in their frailty score post-LTX ((3.4 ± 0.6 to 1.0 ± 0.7), p < 0.001) with 17/18 (94%) no longer classified as frail. Improvements were seen in the following frailty domains: exhaustion, mobility, appetite, and activity. Handgrip strength did not improve posttransplant. CONCLUSIONS: Physical frailty was largely reversible following LTX, underscoring the importance of considering frailty a dynamic, not a fixed, entity. Further work is needed to identify those patients whose frailty is modifiable and establish specific interventions to improve frailty.

Costs Before and After Left Ventricular Assist Device Implant and Preceding Heart Transplant: A Cohort Study.

BACKGROUND: Up to 50% of heart transplant candidates require bridging with left ventricular assist devices (VAD). This study describes hospital activity and cost 1 year preceding and 1 year following VAD implant (pre-VAD) and for the year before transplant (pre-HTX). The sample comprises an Australian cohort and is the first study to investigate costs using both institutional and linked administrative data. METHODS: Institutional activity was established for 77 consecutive patients actively listed for transplant between 2009 and 2012. Costs were sourced from the institution or Australian refined diagnosis groups (arDRGs) and the National Efficient Price for admissions to other public and private institutions. Data from 25/77 VAD recipients were analysed and compared with data from 52/77 pre-transplant patients. Total and per day at risk costs were assessed, as well as totals per resource. RESULTS: Fifty per cent (50%) of the hospital costs in the pre-VAD year occurred during admission of VAD implant. Sixty-four per cent (64%) of costs in the pre-HTX and 38% in the pre-VAD period occurred outside the implanting centre. Costs in the year prior to VAD, $97,565 (IQR $86,907-$153,916), were significantly higher than costs accrued in the year prior to transplant, $40,250 ($13,493-$81,260), p < 0.0001. Once discharged, costs per day at risk for post-VAD patients approximated those from the pre-admission period, p = 0.16 and in the more clinically stable pre-HTX cohort, p = 0.08. CONCLUSION: Compared with the year prior, VAD implant stabilised hospital cost in patients discharged home. A high proportion of the hospital costs in the pre-implant year occur outside the implanting centre and should be considered in economic models assessing the impact of VAD implant.

Factors influencing care-seeking delay or avoidance of heart failure management: A mixed-methods study.

BACKGROUND: Delayed care-seeking for heart failure symptoms increases the risk of unplanned and frequent hospitalization. Presenting to hospital at a later stage when symptoms are severe requires more complex treatment, contributing to longer lengths of stay and higher risk of mortality. Patient-related factors such as knowledge have been highlighted as key contributors to care-seeking delay, yet little is known about how previous experiences within the healthcare setting, including relationships with providers, influence decisions to engage with health services when required. OBJECTIVE: To assess patient-related factors thought to impact care-seeking, and examine the role of previous healthcare experiences in decisions to seek or avoid professional care. DESIGN: Sequential mixed-methods study with a phenomenological approach. SETTINGS: A cardiology in-patient ward in a quaternary referral hospital in Sydney, Australia. PARTICIPANTS: A total of 72 symptomatic in-patients diagnosed with heart failure. METHODS: Self-efficacy, heart failure knowledge and health literacy were assessed quantitatively. Semi-structured, in-depth interviews were undertaken with a subset of participants to elicit previous healthcare experiences and their influence on seeking care when symptoms worsened. Qualitative data were analyzed using interpretative phenomenological analysis and interpreted in the context of quantitative findings. RESULTS: Three major themes were identified that impacted decisions to seek or avoid professional care: (i) preference for continuity; (ii) previous hospital experience and; (iii) patient-provider relationships. Avoidance of care-seeking was described, despite quantitative data reflecting high levels of self-efficacy, heart failure knowledge (12.3±1.9 out of 15), and above-average health literacy levels (75% adequate - 15% higher than average in heart failure). The qualitative and quantitative data together demonstrate that participants delayed seeking care for heart failure symptoms despite having sound knowledge and self-efficacy to seek professional care when necessary. CONCLUSION: Previous healthcare experience affects patient's subsequent action, despite having skills and heart failure knowledge. Interactions with the healthcare system and those within it may impact decisions to avoid seeking treatment more than patient-related factors such as condition-specific understanding.

Access and referral to palliative care for patients with chronic heart failure: A qualitative study of healthcare professionals.

BACKGROUND: Palliative care for individuals with chronic heart failure is recommended for improving patients' symptoms, function and overall quality of life. Despite this mandate, there is limited access and referral to specialist palliative care for individuals with chronic heart failure. OBJECTIVES: To explore healthcare professionals' perspectives on access to palliative care for patients with chronic heart failure, focussing on patient, provider and system factors. METHODS: Cardiologists, palliative care specialists, heart failure nurses and palliative care nurses in acute and community care settings were interviewed using semi-structured interviews. Purposive and snowball sampling methods were used for recruitment. Interview data were analysed using thematic analysis. The COREQ checklist guided data collection and reporting. RESULTS: There were 15 participants in the study, and the majority were female. Participants included palliative medicine physicians, a palliative care nurse consultant, cardiologists, a general practitioner and advanced heart failure nurses. The themes derived from the thematic analysis centred on patient, provider and system factors impacting access and referral to palliative care in the context of chronic heart failure. The patient themes were (a) patient and family preconception of palliative care and (b) patient's clinical profile influences referral. The provider themes were (a) conflict, (b) making decisions and (c) education needs, and the system themes were (a) accessing services and resources and (b) improving the model of care. CONCLUSIONS: The patient's clinical profile, education needs of healthcare professionals and improving access to services and resources need to be considered to enhance palliative care access and referral as well as the interacting and influencing elements of the patient, provider and system.