Heart failure symptom burden in outpatient cardiology: observational cohort study.

OBJECTIVES: To assess the self-reported symptom burden in patients with a diagnosis of heart failure attending an outpatient cardiology clinic through the utilisation of validated patient-reported outcome measures. METHODS: Eligible patients were invited to partake in this observational cohort study. Participant demographics and comorbidities were recorded, followed by participants recording their symptoms using the Integrated Palliative care Outcome Scale (IPOS) and Brief Pain Inventory (BPI) outcome measure tools. RESULTS: A total of 22 patients were included in the study. The majority were male (n=15). The median age was 74.5 (range 55-94) years. Atrial fibrillation and hypertension were the most common comorbidities (n=10). Dyspnoea, weakness and poor mobility were the most prevalent symptoms, affecting 15 (68%) of the 22 patients. Dyspnoea was reported as being the most troublesome symptom. The BPI was completed by 68% (n=15) of the study participants. Median average pain score was 5/10; median worst pain score in the preceding 24 hours was 6/10 and median pain score at time of BPI completion was 3/10. The impact of pain on daily living during the preceding 24 hours ranged from impacting on all activities (n=7) to not impacting on activities (n=1). CONCLUSIONS: Patients with heart failure experience a range of symptoms that vary in severity. Introduction of a symptom assessment tool in the cardiology outpatient setting could help identify patients with a high symptom burden and prompt timely referral to specialist palliative care services.

Perceived Palliative Care Education Needs of GP Trainees: A National Study.

CONTEXT: GP's provide palliative care in the community. Managing complex palliative needs can be challenging for GPs and even more so for GP trainees. During the postgraduate training period GP trainees are working in the community but have more time for education. This time in their career could present a good opportunity for palliative care education. For any education to be effective their educational needs must first be clarified. OBJECTIVES: To explore the perceived palliative care education needs and preferred education methods of GP trainees. METHODS: A national, multisite qualitative study involving a series of semistructured focus group interviews with third and fourth year GP trainees. Data were coded and analyzed using Reflexive Thematic Analysis. RESULTS: Perceived Educational Needs: five themes were conceptualized: 1) Empowerment vs. Disempowerment; 2) Community Practice; 3) Intra- and Interpersonal Skills; 4) Formative Experiences; 5) Contextual Challenges. PREFERRED EDUCATIONAL METHODS: Three themes were conceptualized: 1) Oriented Learning-experiential vs. didactic; 2) Practicalities; 3) Communication Skills. CONCLUSION: This is the first multisite national qualitative study exploring the perceived palliative care educational needs and preferred educational methods of GP trainees. Trainees expressed a unanimous need for experiential palliative care education. Trainees also identified means to address their educational requirements. This study suggests that a collaborative approach between specialist palliative care and general practice is necessary to create educational opportunities.

Patients with Congestive Cardiac Failure Referred to Specialist Palliative Care.

BACKGROUND: Congestive cardiac failure is a chronic, progressive condition with a significant symptom burden. There is limited data available regarding the palliative care requirements of the heart failure population. AIMS: To characterise patients with a primary diagnosis of congestive cardiac failure referred to a specialist palliative care (SPC) service in Ireland. METHODS: A retrospective chart review of patients with congestive cardiac failure admitted to the specialist palliative care unit or reviewed by the community palliative care team over 2 years was carried out, utilising a data collection template. RESULTS: 57 patient charts were included. 54% (n = 31) were female. Mean age was 81 [60 - 97] years. GP's referred 42% (n = 24), Cardiologists 39% (n = 22) and other hospital consultants 19% (n = 11). The commonest symptom reported was dyspnoea (n = 47). Time from referral to death ranged from less than one month (n =22) to greater than one year (n = 3). 14 patients were discharged from the service due to lack of SPC needs. Place of death was distributed between home, hospice, nursing home and acute hospital. CONCLUSIONS: Patients with congestive cardiac failure experience high symptom burden. More than 50% of patients that died while receiving SPC input had been referred less than 1 month prior, while almost a quarter of all referrals resulted in patient discharge. This highlights the importance of further education regarding indication for specialist palliative care referral and the benefits of early referral in this patient cohort when appropriate.

Cross-sectional examination of extrapyramidal side effects in a specialist palliative care inpatient unit.

OBJECTIVES: Extrapyramidal side effects (EPSEs) are serious potentially reversible side effects of antipsychotic and other medications that can cause distress for patients. A core principle of palliative care involves optimising quality of life. If side effects of medications are burdensome, it is imperative that we address this issue. The aim of the study was to determine and describe the burden of EPSEs in a specialist inpatient unit. METHODS: Consenting patients who met inclusion criteria were assessed for EPSE with two validated screening tests, the Modified Simpson-Angus Scale (MSAS) and Barnes Akathisia Rating Scale (BARS). Additional demographic data were collected including medications associated with EPSE, previous history of EPSE and known risk factors that may predispose a patient to EPSE. RESULTS: 43% inpatients met inclusion criteria. At least 66% of patients were taking regular medications associated with EPSE. Of those, 25% were taking ≥2 medications associated with EPSE. The MSAS revealed 50% scored <3, 44% scored 3-5% and 6% scored 6-11. Seven patients had at least one 'not rateable score'. In the BARS (sitting±standing), 94% scored 0/5 and 6% scored 1/5. 12.5% of participants were able to stand for 2 min to complete the BARS. CONCLUSIONS: 50% screened positive for EPSE. The complete BARS was unsuitable for most participants. The MSAS, while allowing a not rateable score, may underestimate EPSE. The frailty of an inpatient unit population impacts on applicability of screening tools and may therefore underestimate the burden of the problem in this population. Development of a population-specific screening tool warrants further investigation.

Self-Reported Quality of Life and Symptom Burden in Ambulatory Patients With Multiple Myeloma on Disease-Modifying Treatment.

BACKGROUND: Knowledge of health-related quality of life (QoL) of patients with multiple myeloma on disease-modifying treatments is limited. AIM: (1) Determine symptom prevalence in patients with multiple myeloma on disease-modifying treatment. Identify the range and nature of these symptoms within the dimensions of physical, psychological, social, and financial well-being. (2) Measure self-reported QoL. (3) Compare the above-mentioned parameters to the general population and patients with advanced cancer. METHOD: Adults with multiple myeloma on disease-modifying treatment, attending the hematology day unit in a tertiary referral center from November 2012 to January 2013, were eligible for inclusion in a cross-sectional quantitative survey. Consenting patients completed 2 validated questionnaires, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented by the myeloma-specific module (EORTC QLQ-MY20) and the Hospital Anxiety Depression Score (HADS). RESULTS: Forty-one patients were included for analysis: 59% were male and 41% were female. Mean age was 63.7 years (range 46-86, standard deviation 11.24). The QoL scores were significantly lower than the general population and comparable to those with advanced cancer. The most commonly reported physical symptoms were pain (66%), fatigue (63%), and dyspnea (51%). About 54% of the patients were burdened by financial worries. Anxiety (30%) and depression (37%) were prevalent. CONCLUSION: Patients with myeloma on disease-modifying treatment have a lower QoL than the general population and are symptomatic across physical, psychological, financial, and social domains. A holistic approach to patient care is warranted, and patients may benefit from specialist palliative care input.

Information transfer to out-of-hours co-operatives: a survey of general practitioners' views in relation to palliative patients.

BACKGROUND: In Ireland, weekend and night medical cover for community based patients is largely provided by general practice co-operatives. Doctors working in this service do not have direct access to patients' medical records which challenges continuity of care. OBJECTIVES: This study investigates the opinion of general practitioners (GPs) on the potential value of a formalised method of information transfer regarding their palliative patients to out-of-hours GP co-operatives. The survey was designed to identify the information that is necessary to offer appropriate anticipated end-of-life care. METHODS: A questionnaire was sent to all 414 GPs registered in the Irish Medical Directory in the southwest of Ireland. Data were analysed with Microsoft Excel and SPSS V.12.0. RESULTS: 52% response rate with exclusion of incomplete questionnaires allowed analysis of 212 data sets. Currently, 82% of GPs do not routinely transfer information pertaining to end-of-life issues to the out-of-hours service. Despite this, 96% would value a standardised way of transferring information. 67% felt they sometimes refer unnecessarily to hospital emergency departments due to lack of information. The most important items of information identified by study participants are as follows: ▸ Diagnosis (97%) ▸ Medications (94%) ▸ Patient insight (91%) ▸ Patient wishes regarding end-of-life care (90%) ▸ Anticipated problems and suggested management(90%). CONCLUSIONS: A structured format for information transfer regarding end-of-life care is deemed important by GPs when working on-call at night and weekends. Diagnosis, patient preference and management plans are valued.