Background:
Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid ...development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered.
Aim:
To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development.
Design:
A qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients (n = 10) and family caregivers (n = 4). Thematic analysis was underpinned by a constructivist approach.
Setting/participants:
All patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one month after infusion and follow-up post-treatment (5–18 months).
Results:
Identified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist – an expert, consistent point of contact – was essential.
Conclusion:
Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.
Background:
People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care.
Aim:
To explore palliative care experiences of ...people of African and Caribbean descent during and immediately prior to the pandemic.
Design:
Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with an expert patient and public advisory group.
Setting/participants:
Twenty-six bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England, recruited using social media, community networks and direct advertising to over 150 organisations.
Results:
Three themes were identified: Representation: Participants did not see themselves reflected in the palliative care services and did not expect their needs to be understood. Mistrust of the healthcare system and perceptions of racism were common and led to anticipation of inequitable care. Personalisation: Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services not offered to all. Awareness and education: Professionals felt they lacked the knowledge to provide care to diverse communities, but were reluctant to ask, due to fear of making mistakes. Inequitable access to services was exacerbated by, but not unique to, the pandemic. Participants recommended raising awareness of palliative services, building professional competence in culturally-sensitive care, and greater ethnic diversity within services.
Conclusions:
Person-centred, culturally-competent palliative care is not the norm for people of African and Caribbean descent. Expectations of inequitable care are widespread. Sustained action on multiple fronts is needed.
Background:
Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain ...a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions.
Aim:
This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice.
Study design:
A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England.
Results:
Three themes (‘overlooked’, ‘disjointed care’ and ‘awareness and expertise’) were identified. Patients with chronic obstructive pulmonary disease are a ‘forgotten about’ population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning.
Conclusions:
Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care.
We have previously reported the prevalence of dementia in older adults living in the rural Hai district of Tanzania according to the Diagnostic and Statistical Manual of Mental Disorders, 4th edition ...(DSM-IV) criteria. The aim of this study was to compare prevalence rates using the DSM-IV criteria with those obtained using the 10/66 diagnostic criteria, which is specifically designed for use in low- and middle-income countries.
In phase I, 1,198 people aged 70 and older were screened for dementia. A stratified sample of 296 was then clinically assessed for dementia according to the DSM-IV criteria. In addition, data were collected according to the protocol of the 10/66 Dementia Research Group, which allowed a separate diagnosis of dementia according to these criteria to be established.
The age-standardised prevalence of clinical DSM-IV dementia was 6.4% (95% confidence interval CI 4.9-7.9%) and of '10/66 dementia' was 21.6% (95% CI 17.5-25.7%). Education was a significant predictor of '10/66 dementia', but not of DSM-IV dementia.
There are large discrepancies in dementia prevalence rates depending on which diagnostic system is used. In rural sub-Saharan Africa, it is not clear whether the association between education and dementia using the 10/66 criteria is a genuine effect or the result of an educational bias within the diagnostic instrument. Despite its possible flaws, the DSM-IV criteria represent an international standard for dementia diagnosis. The 10/66 diagnostic criteria may be more appropriate when identification of early and mild cognitive impairment is required.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Abstract Cognitive impairment is thought to be a major cause of disability worldwide, though data from sub-Saharan Africa (SSA) are sparse. This study aimed to investigate the association between ...cognitive impairment and disability in a cohort of community-dwelling older adults living in Tanzania. The study cohort of 296 people aged 70 years and over was recruited as part of a dementia prevalence study. Subjects were diagnosed as having dementia or mild cognitive impairment according to the DSM-IV criteria. Disability level was assessed according to the WHO Disability Assessment Schedule, version 2.0 (WHODAS). A higher WHODAS score indicates greater disability. The median WHODAS in the background population was 25.0; in those with dementia and in those with mild cognitive impairment, 72 of 78 (92.3%) and 41 of 46 (89.1%), respectively, had a WHODAS score above this level. The presence of dementia, mild cognitive impairment, hearing impairment, being unable to walk without an aid and not having attended school were independent predictors of having a WHODAS score above 25.0, though age and gender were not. In summary, cognitive impairment is a significant predictor of disability in elderly Tanzanians. Screening for early signs of cognitive decline would allow management strategies to be put in place that may reduce the associated disability burden.
Background/objectives
The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the ...literature.
Methods
We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others.
Results
We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care.
Conclusions
The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise.
•Specialist oncology occupational therapists (OTs) provide broad ranging interventions.•Clinical frailty scale rapidly gauges overall function and indicates who will benefit.•Holistic assessment and ...intervention from an OT avoids/shortens hospital admission.•OTs are appropriately placed for perform timely advance care planning.•Preferred place of death is more achievable with timely advance care planning.
Lung cancer and its treatments cause or accelerate frailty, detrimentally affecting function and quality of life. Occupational therapists (OTs) provide global assessments and interventions, but services are often available for inpatients. The impact of holistic assessment and early intervention in the outpatient setting is unknown.
A tertiary cancer center in North East England piloted a Lung Cancer Outpatient OT Service for patients with thoracic malignancy and a Clinical Frailty Scale Score (CFS) ≥ 5. Service effectiveness was evaluated through calculation of admission avoidance, hospital length-of-stay reduction, completion/impact of advance care planning and patient/family feedback. Demographics, frailty level, required interventions, and onward referrals were recorded.
A total of 153 patients (median age of 71 (range 46-90) received OT assessment and intervention. 48% were in the lowest socioeconomic quintile. Median CFS score was 5 (mildly frail (range: 4-7)) at initial assessment. Total of 918 interventions were delivered (median: 5, IQR: 3-7, Range 0-22). 48% of patients engaged in future planning (national average: 10%-15% P < .0001) and 78.5% achieved preferred place of death (national average 30%). An estimated 37 hospital admissions were avoided. In admitted patients, average inpatient stay when known to the service was 6.5 days less than other frail lung cancer patients in our unit (95% CI 4-9.1 days P < .0001). Higher CFS was associated with poor survival (P < .05).
Outpatient OT services can avoid and shorten hospital admissions through advance care planning, management of functional disruption, onward referral to other allied health professionals and palliative care. A comprehensive multidisciplinary outpatient service may benefit patients further and should be the focus of future research.
Literature reporting the utility of occupational therapists in the lung cancer outpatient setting is limited. A total of 153 patients with thoracic malignancy, functional disruption and clinical frailty scores of ≥5 received outpatient occupational therapy assessment. Timely input helped manage frailty, avoid/shorten hospital admissions and increase advance care planning. This study demonstrates the significant scope of the occupational therapy role within cancer services.
Abstract
Background
COVID-19 brought additional challenges to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision-making, which was already a contentious issue. In the UK, reports of poor ...DNACPR decision-making and communication emerged in 2020, including from the regulator, the Care Quality Commission. This paper explores the experiences of people who discussed DNACPR with a healthcare professional on behalf of a relative during the coronavirus pandemic, with the aim of identifying areas of good practice and what needs to be improved.
Methods
a total of 39 people participated in semi-structured interviews via video conferencing software or telephone. Data were evaluated using Framework Analysis.
Findings
results are presented around three main themes: understanding, communication and impact. Participants’ understanding about DNACPR was important, as those with better understanding tended to reflect more positively on their discussions with clinicians. The role of relatives in the decision-making process was a frequent source of misunderstanding. Healthcare professionals’ communication skills were important. Where discussions went well, relatives were given clear explanations and the opportunity to ask questions. However many relatives felt that conversations were rushed. DNACPR discussions can have a lasting impact—relatives reported them to be significant moments in care journeys. Many relatives perceived that they were asked to decide whether their relative should receive CPR and described enduring emotional consequences, including guilt.
Conclusion
the pandemic has illuminated deficiencies in current practice around DNACPR discussion, which can have difficult to anticipate and lasting negative consequences for relatives. This research raises questions about the current approach to DNACPR decision-making.
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