Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study

Background: Routine use of outcome measures in palliative care is recommended to demonstrate and improve quality of care. The use of outcome measures is relatively recent in UK specialist palliative care services and understanding their use in practice is key to successful implementation. We therefore aimed to explore how patient-centred outcome measures are used in specialist palliative care, and identify key considerations for implementation.Methods: Multi-method qualitative study (semi-structured interviews and non-participant observation). Patients, family caregivers and health professionals were purposively sampled from nine specialist palliative care services (hospice, hospital and community settings) in London, UK. Framework analysis, informed by the Consolidated Framework for Implementation Research (CFIR), was undertaken.Results: Thirty eight interviews and nine observations were conducted. Findings are presented according to the five CFIR domains: 1) Intervention: participants highlighted advantages, disadvantages and appropriateness of outcome measures in palliative care; 2) Outer setting: policy and national drivers are necessary to encourage use of outcome measures; 3) Inner setting: information technology infrastructure, organisational drive, and support from peers and leadership were institutional factors that shaped the use of outcome measures; 4) Individual: clear rationale for using outcome measures and skills to use them in practice were essential; 5) Implementation: stepwise introduction of outcome measures, regular feedback sessions, and champions/facilitators were important to strengthen routine use.Conclusion: All CFIR domains need consideration for effective implementation. Outcome data needs to be fed back to and interpreted for professionals in order to improve and sustain outcome data collection, and drive meaningful improvements in palliative care

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique

© The Author(s) 2019. Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden. Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured. Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1–5, lowest to highest priority) of domains. Participants’ rationales for their choices were analysed thematically. Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016. Results: Participants’ years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were ‘overall wellbeing/quality of life’ (2.75), ‘pain’ (2.06), and ‘information needs/preferences’ (2.06), respectively. The palliative measure ‘Phase of Illness’ was recommended as the preferred measure of time period over which the domains were measured. Conclusion: The domains of ‘overall wellbeing/quality of life’, ‘pain’, and ‘information needs/preferences’ are recommended for regular measurement, assessed using ‘Phase of Illness’. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care

Characteristics and mortality rates among patients requiring intermediate care: a national cohort study using linked databases

Background: Adults increasingly live and die with chronic progressive conditions into advanced age. Many live with multimorbidity and an uncertain illness trajectory with points of marked decline, loss of function and increased risk of end of life. Intermediate care units support mainly older adults in transition between hospital and home to regain function and anticipate and plan for end of life. This study examined the patient characteristics and the factors associated with mortality over 1 year post-admission to an intermediate care unit to inform priorities for care. Methods: A national cohort study of adults admitted to intermediate care units in England using linked individual-level Hospital Episode Statistics and death registration data. The main outcome was mortality within 1 year from admission. The cohort was examined as two groups with significant differences in mortality between main diagnosis of a non-cancer condition and cancer. Data analysis used Kaplan-Meier curves to explore mortality differences between the groups and a time-dependant Cox proportional hazards model to determine mortality risk factors. Results: The cohort comprised 76,704 adults with median age 81 years (IQR 70–88) admitted to 220 intermediate care units over 1 year in 2016. Overall, 28.0% died within 1 year post-admission. Mortality varied by the main diagnosis of cancer (total n = 3680, 70.8% died) and non-cancer condition (total n = 73,024, 25.8% died). Illness-related factors had the highest adjusted hazard ratios [aHRs]. At 0–28 days post-admission, risks were highest for non-cancer respiratory conditions (pneumonia (aHR 6.17 [95%CI 4.90–7.76]), chronic obstructive pulmonary disease (aHR 5.01 [95% CI 3.78–6.62]), dementia (aHR 5.07 [95% CI 3.80–6.77]) and liver disease (aHR 9.75 [95% CI 6.50–14.6]) compared with musculoskeletal disorders. In cancer, lung cancer showed largest risk (aHR 1.20 [95%CI 1.04–1.39]) compared with cancer ‘other’. Risks increased with high multimorbidity for non-cancer (aHR 2.57 [95% CI 2.36–2.79]) and cancer (aHR 2.59 [95% CI 2.13–3.15]) (reference: lowest). Conclusions: One in four patients died within 1 year. Indicators for palliative care assessment are respiratory conditions, dementia, liver disease, cancer and rising multimorbidity. The traditional emphasis on rehabilitation and recovery in intermediate care units has changed with an ageing population and the need for greater integration of palliative care

Preferences and priorities to manage clinical uncertainty for older people with frailty and multimorbidity:a discrete choice experiment and stakeholder consultations

Abstract Background Clinical uncertainty is inherent for people with frailty and multimorbidity. Depleted physiological reserves increase vulnerability to a decline in health and adverse outcomes from a stressor event. Evidence-based tools can improve care processes and outcomes, but little is known about priorities to deliver care for older people with frailty and multimorbidity. This study aimed to explore the preferences and priorities for patients, family carers and healthcare practitioners to enhance care processes of comprehensive assessment, communication and continuity of care in managing clinical uncertainty using evidence-based tools. Methods A parallel mixed method observational study in four inpatient intermediate care units (community hospitals) for patients in transition between hospital and home. We used a discrete choice experiment (DCE) to examine patient and family preferences and priorities on the attributes of enhanced services; and stakeholder consultations with practitioners to discuss and generate recommendations on using tools to augment care processes. Data analysis used logit modelling in the DCE, and framework analysis for consultation data. Results Thirty-three patients participated in the DCE (mean age 84 years, SD 7.76). Patients preferred a service where family were contacted on admission and discharge (β 0.36, 95% CI 0.10 to 0.61), care received closer to home (β − 0.04, 95% CI − 0.06 to − 0.02) and the GP is fully informed about care (β 0.29, 95% CI 0.05–0.52). Four stakeholder consultations (n = 48 participants) generated 20 recommendations centred around three main themes: tailoring care processes to manage multiple care needs for an ageing population with frailty and multimorbidity; the importance of ongoing communication with patient and family; and clear and concise evidence-based tools to enhance communication between clinical teams and continuity of care on discharge. Conclusion Family engagement is vital to manage clinical uncertainty. Both patients and practitioners prioritise engaging the family to support person-centred care and continuity of care within and across care settings. Patients wished to maximise family involvement by enabling their support with a preference for care close to home. Evidence-based tools used across disciplines and services can provide a shared succinct language to facilitate communication and continuity of care at points of transition in care settings

International advances in outcome measurement in palliative care: One step closer to cross-national comparisons of routinely collected outcome data in palliative care

The Palliative Care Outcomes Collaboration (PCOC), Australia, and the Outcome Assessment and Complexity Collaborative (OACC), UK, are initiatives that support the routine use of outcome measures in specialist palliative care. Both initiatives follow a sophisticated implementation approach, facilitating routine clinical assessment tools that can be used to measure and benchmark patient outcomes. Both projects also provide feedback to participating services and encourage the use of outcomes data for service development