RESUMEN
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 (ß 0.36, 95% CI 0.10 to 0.61), care received closer to home (ß - 0.04, 95% CI - 0.06 to - 0.02) and the GP is fully informed about care (ß 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.
Asunto(s)
Fragilidad , Multimorbilidad , Anciano , Anciano de 80 o más Años , Toma de Decisiones Clínicas , Fragilidad/diagnóstico , Fragilidad/epidemiología , Fragilidad/terapia , Humanos , Derivación y Consulta , IncertidumbreRESUMEN
BACKGROUND: Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical uncertainty. We aimed to develop a logic model of person-centred evidence-based tools to manage clinical uncertainty in older people. METHODS: A systematic mixed-methods review with a results-based convergent synthesis design: a process-based iterative logic model was used, starting with a conceptual framework of clinical uncertainty in older people towards the end of life. This underpinned the methods. Medline, PsycINFO, CINAHL and ASSIA were searched from 2000 to December 2019, using a combination of terms: "uncertainty" AND "palliative care" AND "assessment" OR "care planning". Studies were included if they developed or evaluated a person-centred tool to manage clinical uncertainty in people aged ≥65 years approaching the end of life and quality appraised using QualSyst. Quantitative and qualitative data were narratively synthesised and thematically analysed respectively and integrated into the logic model. RESULTS: Of the 17,095 articles identified, 44 were included, involving 63 tools. There was strong evidence that tools used in clinical care could improve identification of patient priorities and needs (n = 14 studies); that tools support partnership working between patients and practitioners (n = 8) and that tools support integrated care within and across teams and with patients and families (n = 14), improving patient outcomes such as quality of death and dying and satisfaction with care. Communication of clinical uncertainty to patients and families had the least evidence and is challenging to do well. CONCLUSION: The identified logic model moves current knowledge from conceptualising clinical uncertainty to applying evidence-based tools to optimise person-centred management and improve patient outcomes. Key causal pathways are identification of individual priorities and needs, individual care and treatment and integrated care. Communication of clinical uncertainty to patients is challenging and requires training and skill and the use of tools to support practice.
Asunto(s)
Toma de Decisiones Clínicas , Cuidados Paliativos , Anciano , Comunicación , Muerte , Humanos , IncertidumbreRESUMEN
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.
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Consenso , Evaluación de Resultado en la Atención de Salud , Cuidados Paliativos , Adolescente , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Internacionalidad , Masculino , Medición de Resultados Informados por el Paciente , Indicadores de Calidad de la Atención de Salud , Calidad de la Atención de Salud , Adulto JovenRESUMEN
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: (I) intervention: participants highlighted advantages, disadvantages and appropriateness of outcome measures in palliative care; (II) outer setting: policy and national drivers are necessary to encourage use of outcome measures; (III) inner setting: information technology infrastructure, organisational drive, and support from peers and leadership were institutional factors that shaped the use of outcome measures; (IV) individual: clear rationale for using outcome measures and skills to use them in practice were essential; (V) implementation: stepwise introduction of outcome measures, regular feedback sessions, and champions/facilitators were important to strengthen routine use. CONCLUSIONS: 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.