Dataset Information

Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.

ABSTRACT:

Background

People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations.

Aims

To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care.

Design

A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616).

Data sources

MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal.

Results

Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care.

Conclusions

Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder.

SUBMITTER: Ashok N

PROVIDER: S-EPMC10503257 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.

Ashok Nivedita N Hughes Daniel D Yardley Sarah S

Palliative medicine 20230609 8

<h4>Background</h4>People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations.<h4>Aims</h4>To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to imp ...[more]

PMID: 37294100

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Project description:Background: Natural language processing (NLP), a form of computer-assisted data abstraction, rapidly identifies serious illness communication domains such as code-status confirmation and goals of care (GOC) discussions within free-text notes, using a codebook of phrases. Differences in the phrases associated with palliative care for patients with different types of illness are unknown. Objective: To compare communication of code-status clarification and GOC discussions between patients with advanced pancreatic cancer undergoing palliative procedures and patients admitted with life-threatening trauma. Design: Retrospective cohort study. Setting/Subjects: Patients with in-hospital admissions within two academic medical centers. Measurements: Sensitivity and specificity of NLP-identified communication domains compared with manual review. Results: Among patients with advanced pancreatic cancer (n = 523), NLP identified code-status clarification in 54% of admissions and GOC discussions in 49% of admissions. The sensitivity and specificity for code-status clarification were 94% and 99% respectively, while the sensitivity and specificity for a GOC discussion were 93% and 100%, respectively. Using the same codebook in patients with life-threatening trauma (n = 2093), NLP identified code-status clarification in 25.9% of admissions and GOC discussions in 6.3% of admissions. While NLP identification had 100% specificity, the sensitivity for code-status clarification and GOC discussion was reduced to 86% and 50%, respectively. Adding dynamic phrases such as "ongoing discussions" and phrases related to "family meetings" increased the sensitivity of the NLP codebook for code status to 98% and for GOC discussions to 100%. Conclusions: Communication of code status and GOC differ between patients with advanced cancer and those with life-threatening trauma. Recognition of these differences can aid in identification in patterns of palliative care delivery.

Project description:ImportanceEconomics of care for adults with serious illness is a policy priority worldwide. Palliative care may lower costs for hospitalized adults, but the evidence has important limitations.ObjectiveTo estimate the association of palliative care consultation (PCC) with direct hospital costs for adults with serious illness.Data sourcesSystematic searches of the Embase, PsycINFO, CENTRAL, PubMed, CINAHL, and EconLit databases were performed for English-language journal articles using keywords in the domains of palliative care (eg, palliative, terminal) and economics (eg, cost, utilization), with limiters for hospital and consultation. For Embase, PsycINFO, and CENTRAL, we searched without a time limitation. For PubMed, CINAHL, and EconLit, we searched for articles published after August 1, 2013. Data analysis was performed from April 8, 2017, to September 16, 2017.Study selectionEconomic evaluations of interdisciplinary PCC for hospitalized adults with at least 1 of 7 illnesses (cancer; heart, liver, or kidney failure; chronic obstructive pulmonary disease; AIDS/HIV; or selected neurodegenerative conditions) in the hospital inpatient setting vs usual care only, controlling for a minimum list of confounders.Data extraction and synthesisEight eligible studies were identified, all cohort studies, of which 6 provided sufficient information for inclusion. The study estimated the association of PCC within 3 days of admission with direct hospital costs for each sample and for subsamples defined by primary diagnoses and number of comorbidities at admission, controlling for confounding with an instrumental variable when available and otherwise propensity score weighting. Treatment effect estimates were pooled in the meta-analysis.Main outcomes and measuresTotal direct hospital costs.ResultsThis study included 6 samples with a total 133 118 patients (range, 1020-82 273), of whom 93.2% were discharged alive (range, 89.0%-98.4%), 40.8% had a primary diagnosis of cancer (range, 15.7%-100.0%), and 3.6% received a PCC (range, 2.2%-22.3%). Mean Elixhauser index scores ranged from 2.2 to 3.5 among the studies. When patients were pooled irrespective of diagnosis, there was a statistically significant reduction in costs (-$3237; 95% CI, -$3581 to -$2893; P < .001). In the stratified analyses, there was a reduction in costs for the cancer (-$4251; 95% CI, -$4664 to -$3837; P < .001) and noncancer (-$2105; 95% CI, -$2698 to -$1511; P < .001) subsamples. The reduction in cost was greater in those with 4 or more comorbidities than for those with 2 or fewer.Conclusions and relevanceThe estimated association of early hospital PCC with hospital costs may vary according to baseline clinical factors. Estimates may be larger for primary diagnosis of cancer and more comorbidities compared with primary diagnosis of noncancer and fewer comorbidities. Increasing palliative care capacity to meet national guidelines may reduce costs for hospitalized adults with serious and complex illnesses.

Dataset Information

Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.

Background

Aims

Design

Data sources

Results

Conclusions

Publications

Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.

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