Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study.

BACKGROUND: Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients. AIM: To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients. DESIGN: A feasibility study using a pre-post uncontrolled design. SETTING: Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland Results: Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients. CONCLUSION: Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population.

Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.

BACKGROUND: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients' needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. AIM: To explore whether and how a palliative care-specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients' experience of patient-centred care in nurse-led chronic heart failure disease management clinics. DESIGN: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. SETTING/PARTICIPANTS: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II-IV. Nurses who led these clinics were eligible for inclusion. RESULTS: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients' symptoms and concerns, facilitating patient-nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. CONCLUSION: This Integrated Palliative care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure.

Patients with chronic heart failure (CHF) have symptoms and concerns which are inadequately addressed. Patient-reported outcome measures (PROMs) can potentially improve the identification and management of advanced symptoms and palliative concerns. However, these have not been used in CHF. OBJECTIVES: To examine the feasibility and acceptability of using a PROM-the Integrated Palliative care Outcome Scale (IPOS)-together with heart failure nurse education and training to improve the identification and management of symptoms and concerns among patients with CHF. METHODS: A parallel, mixed methods design with an embedded qualitative component was used to examine the feasibility of recruitment, retention, intervention adherence/compliance and follow-up assessment completion (symptom burden, quality of life, psychological well-being). Patient and nurse qualitative semistructured interviews explored intervention and study design feasibility and its acceptability. RESULTS: Conversion to consent was 46.9% (372 screened, 81 approached, 38 recruited). 66% of patient participants completed the IPOS; 6% of IPOS questionnaire items were missing (non-response). Over two-thirds (65.6%) of these missing items related to three patients. No item was consistently missing; appetite was the most frequent missing item (1.4%). 92% of participants who completed the IPOS completed all follow-up assessments (1-2 days, 1-2 weeks and 4-6 weeks post-IPOS completion) with no missing data. The a priori feasibility objectives were met. Patients and nurses reported the intervention and study design feasible and acceptable. CONCLUSIONS: A palliative-specific PROM-based intervention is feasible and acceptable to both patients with CHF and nurses in nurse-led disease management clinics for the purposes of both clinical care and research.

Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review.

BACKGROUND: High symptom burden is common in long-term care residents with dementia and results in distress and behavioral challenges if undetected. Physicians may have limited time to regularly examine all residents, particularly those unable to self-report, and may rely on reports from caregivers who are frequently in a good position to detect symptoms quickly. We aimed to identify proxy-completed assessment measures of symptoms experienced by people with dementia, and critically appraise the psychometric properties and applicability for use in long-term care settings by caregivers. METHODS: We searched Medline, EMBASE, PsycINFO, CINAHL and ASSIA from inception to 23 June 2015, supplemented by citation and reference searches. The search strategy used a combination of terms: dementia OR long-term care AND assessment AND symptoms (e.g. pain). Studies were included if they evaluated psychometric properties of proxy-completed symptom assessment measures for people with dementia in any setting or those of mixed cognitive abilities residing in long-term care settings. Measures were included if they did not require clinical training, and used proxy-observed behaviors to support assessment in verbally compromised people with dementia. Data were extracted on study setting and sample, measurement properties and psychometric properties. Measures were independently evaluated by two investigators using quality criteria for measurement properties, and evaluated for clinical applicability in long-term settings. RESULTS: Of the 19,942 studies identified, 40 studies evaluating 32 measures assessing pain (n = 12), oral health (n = 2), multiple neuropsychiatric symptoms (n = 2), depression (n = 8), anxiety (n = 2), psychological wellbeing (n = 4), and discomfort (n = 2) were included. The majority of studies (31/40) were conducted in long-term care settings although none of the neuropsychiatric or anxiety measures were validated in this setting. The pain assessments, PAINAD and PACSLAC had the strongest psychometric evidence. The oral health, discomfort, and three psychological wellbeing measures were validated in this setting but require further psychometric evaluation. Depression measures were poor at detecting depression in this population. All measures require further investigation into agreement, responsiveness and interpretability. CONCLUSIONS: Measures for pain are best developed for this population and setting. All other measures require further validation. A multi-symptom measure to support comprehensive assessment and monitoring in this population is required.

The need for palliative care in Ireland: a population-based estimate of palliative care using routine mortality data, inclusive of nonmalignant conditions.

CONTEXT: Over the history of palliative care provision in Ireland, services have predominantly provided care to those with cancer. Previous estimates of palliative care need focused primarily on specialist palliative care and included only a limited number of nonmalignant diseases. OBJECTIVES: The primary aim of this study was to estimate the potential population with generalist and/or specialist palliative care needs in Ireland using routine mortality data inclusive of nonmalignant conditions. The secondary aim was to consider the quality of Irish data available for this population-based estimate. METHODS: Irish routine mortality data (2007-2011) were analyzed for malignant and nonmalignant conditions recognized as potentially requiring palliative care input, using specific International Statistical Classification of Diseases and Related Health Problems-10th Revision codes. The method developed by Murtagh et al. was used to give a population-based palliative care needs estimate, encompassing generalist and specialist palliative care need. RESULTS: During the period 2007-2011, there were 141,807 deaths. Eighty percent were from conditions recognized as having associated palliative care needs, with 41,253 (30%) deaths from cancer and 71,226 (50%) deaths from noncancer conditions. The majority of deaths, 81% (91,914), were among those ≥65 years. There was a 13.9% (901) increase in deaths of those ≥85 years. Deaths from dementia increased by 51.3%, with an increase in deaths from neurodegenerative disease (42.8%) and cancer (9.5%). CONCLUSION: Future palliative care policy decisions in Ireland must consider the rapidly aging Irish population with the accompanying increase in deaths from cancer, dementia, and neurodegenerative disease and associated palliative care need. New models of palliative care may be required to address this.

Palliative care for advanced renal disease: a summary of the evidence and future direction.

BACKGROUND: Patients with end-stage kidney disease can have a significant symptom burden with complex co-morbidities. Compounding this is the choice between dialysis and conservative management. NEED FOR SUPPORTIVE AND PALLIATIVE CARE: For individuals with end-stage kidney disease, palliative care can provide support with symptom management, advance care planning and psychological support and education for both patients and their families. Optimum management may be achieved through collaboration between renal and palliative care professionals, combining their different skills in addressing symptom and medication management. Palliative and supportive care must be patient-centred to be effective. Multidisciplinary cross-organisational input is central to address the complex care needs of these patients, particularly for those in the community. WHAT IS KNOWN/WHAT IS NOT KNOWN: There is growing awareness of the need for research into the palliative care needs of those with end-stage kidney disease. Research has shown that patients receiving dialysis may prioritise quality of life over survival time, partly due to the constraints that they feel dialysis imposes on them. Systematic study of those opting for a conservative management pathway rather than dialysis is beginning to happen. RESEARCH IMPLICATIONS: Research is required into what underpins the preferences and priorities of patients with end-stage kidney disease to provide them with the best palliative and supportive care. POLICY AND PRACTICE: As more patients opt to follow the conservative pathway for their advanced renal disease, a change in service provision is required, with greater regular inclusion of palliative and supportive needs to address the gap in the care provision for this growing group.