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Annals of Indian Academy of Neurology May 2024Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate...
BACKGROUND
Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate neuropalliative care into standard care. The aim of the study is to understand the psychosocial functioning in persons with PD and explore their caregivers' burden.
METHODS
The study utilizes a mixed-methods design where 50 patient-caregiver dyads attending the outpatient services of the movement disorder clinic at a tertiary care hospital were measured on psychosocial functioning and caregiver burden and palliative care outcomes for a period of 6 months. Focus group discussions were conducted with 18 patient-caregiver dyads to understand the needs of palliative care.
RESULTS
It was found that caregiver burden was positively correlated with palliative care outcomes scores of patients ( r = 0.586) and caregivers ( r = 0.675) and psychosocial functioning was positively correlated with palliative care outcomes of patients ( r = 0.708). The psychosocial functioning score was higher among female patients (indicating worse functioning) than males, and female caregivers experienced significantly higher caregiver burden. The qualitative findings reveal that there is a substantial gap in awareness about palliative care, lack of information, presence of stigmatizing beliefs, and lack of adequate accessibility to palliative facilities.
CONCLUSION
The study lays the foundation for future PD neuropalliative care research, guiding interventions, and exploration of regional variations in PD experiences in India. There is a need to address caregiver burden in PD in India.
PubMed: 38902870
DOI: 10.4103/aian.aian_83_24 -
BMC Cancer Jun 2024Despite the availability of effective vaccines, human papillomavirus (HPV) vaccine uptake remains low in most resource-limited settings including Nigeria. Mobile health... (Randomized Controlled Trial)
Randomized Controlled Trial
Impact of mobile health technologies on human papillomavirus vaccination uptake among mothers of unvaccinated girls aged 9-14 years in Lagos, Nigeria (mHealth-HPVac): study protocol of a randomised controlled trial.
BACKGROUND
Despite the availability of effective vaccines, human papillomavirus (HPV) vaccine uptake remains low in most resource-limited settings including Nigeria. Mobile health technology (mHealth) has the potential to empower patients to manage their health, reduce health disparities, and enhance the uptake of HPV vaccination.
AIM
The "mHealth-HPVac" study will assess the effects of mHealth using short text messages on the uptake of HPV vaccination among mothers of unvaccinated girls aged 9-14 years and also determine the factors influencing the uptake of HPV vaccination among these mothers.
METHODS
This protocol highlights a randomised controlled trial involving women aged 25-65 years who will be enrolled on attendance for routine care at the General Outpatient clinics of Lagos University Teaching Hospital, Lagos, Nigeria between July and December 2024. At baseline, n = 123 women will be randomised to either a short text message or usual care (control) arm. The primary outcome is vaccination of the participant's school-age girl(s) at any time during the 6 months of follow-up. The associations between any two groups of continuous variables will be assessed using the independent sample t-test for normally distributed data, or the Mann-Whitney U test for skewed data. For two groups of categorical variables, the Chi-square (X2) test or Fisher's exact test will be used, as appropriate. Using the multivariable binary logistic regression model, we will examine the effects of all relevant sociodemographic and clinical variables on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls. Statistical significance will be reported as P < 0.05.
DISCUSSION
The mHealth-Cervix study will evaluate the impact of mobile technologies on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls in Lagos, Nigeria as a way of contributing to the reduction in the wide disparities in cervical cancer incidence through primary prevention facilitated using health promotion to improve HPV vaccination uptake.
REGISTRATION
PACTR202406727470443 (6th June 2024).
Topics: Humans; Female; Papillomavirus Vaccines; Adolescent; Nigeria; Child; Adult; Papillomavirus Infections; Telemedicine; Mothers; Vaccination; Middle Aged; Text Messaging; Patient Acceptance of Health Care; Aged; Uterine Cervical Neoplasms; Human Papillomavirus Viruses
PubMed: 38902718
DOI: 10.1186/s12885-024-12538-6 -
BMC Palliative Care Jun 2024The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part...
BACKGROUND
The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania).
METHODS
A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data.
RESULTS
Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively.
CONCLUSIONS
Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.
Topics: Humans; Palliative Care; Surveys and Questionnaires; Hypnotics and Sedatives; Europe; Male; Female; Middle Aged; Adult; Germany; Romania; Spain; Belgium; Netherlands; Italy; United Kingdom; Attitude of Health Personnel; Hungary; Practice Patterns, Physicians'
PubMed: 38902670
DOI: 10.1186/s12904-024-01484-6 -
BMC Palliative Care Jun 2024Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such...
Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.
BACKGROUND
Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care.
METHODS
This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care.
DISCUSSION
Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma.
TRIAL REGISTRATION
Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.
Topics: Humans; Qualitative Research; Palliative Care; Patient Discharge; Caregivers; Communication; Health Personnel; Primary Health Care; Male; Female; Adult; Interviews as Topic; Patients; Continuity of Patient Care
PubMed: 38902635
DOI: 10.1186/s12904-024-01451-1 -
Acta Medica Okayama Jun 2024We report a case of a large vestibular schwannoma in an 80-year-old female patient that shrank after palliative Gamma Knife radiosurgery (GKS). Neurological symptoms...
We report a case of a large vestibular schwannoma in an 80-year-old female patient that shrank after palliative Gamma Knife radiosurgery (GKS). Neurological symptoms included hearing deterioration and facial palsy. The tumor volume was 21.9 mL. Craniotomy was considered high-risk, and conventional GKS was risky, owing to the risk of transient enlargement. Therefore, GKS was performed on only a portion of the tumor. The marginal dose (12 Gy) volume was 3.8 mL (17.4%). The tumor began to shrink after transient enlargement. Sixty months later, the tumor volume was only 3.1 mL, and the patient was able to maintain independent activities of daily living without salvage treatment.
Topics: Humans; Radiosurgery; Female; Aged, 80 and over; Neuroma, Acoustic; Palliative Care
PubMed: 38902220
DOI: 10.18926/AMO/67207 -
Chest Jun 2024Cognitive and physical limitations are common in individuals with chronic lung diseases, but their interactions with physical function and activities of daily living are... (Review)
Review
Translating the Interplay of Cognition and Physical Performance in Chronic Obstructive Pulmonary Disease and Interstitial Lung Disease: Meeting Report and Literature Review.
TOPIC IMPORTANCE
Cognitive and physical limitations are common in individuals with chronic lung diseases, but their interactions with physical function and activities of daily living are not well characterized. Understanding these interactions and potential contributors may provide insights on disability and enable more tailored rehabilitation strategies.
REVIEW FINDINGS
This review summarizes a 2-day meeting of patient partners, clinicians, researchers, and lung associations to discuss the interplay between cognitive and physical function in people with chronic lung diseases. This report covers four areas: 1) cognitive-physical limitations in patients with chronic lung diseases, 2) cognitive assessments, 3) strategies to optimize cognition and motor control and 4) future research directions. Cognitive and physical impairments have multiple effects on quality of life and daily function. Meeting participants acknowledged the need for a standardized cognitive assessment to complement physical assessments in patients with chronic lung diseases. Dyspnea, fatigue, and age were recognized as important contributors to cognition that can affect motor control and daily physical function. Pulmonary rehabilitation was highlighted as a multidisciplinary strategy that may improve respiratory and limb motor control through neuroplasticity, and has the potential to improve physical function and quality of life.
SUMMARY
There was consensus that cognitive function and the cognitive interference of dyspnea in people with chronic lung diseases contribute to motor control impairments that can negatively impact daily function, which may be improved with pulmonary rehabilitation. The meeting generated several key research questions related to cognitive-physical interactions in individuals with chronic lung diseases.
PubMed: 38901488
DOI: 10.1016/j.chest.2024.05.027 -
Cureus May 2024In "graying" populations with extended lifespans and survivable forms of cancer, palliative services become increasingly important but may be difficult to introduce into... (Review)
Review
In "graying" populations with extended lifespans and survivable forms of cancer, palliative services become increasingly important but may be difficult to introduce into public discourse, public policy, and healthcare systems. Latin America (LATAM) faces many challenges as it introduces and, in some cases, develops its palliative care programs; though the challenges faced here are in many ways universal ones, LATAM approaches may be unique and based on the region's specific culture, politics, and economics. This narrative review based on a literature search identified 10 main themes that can be interpreted as challenges and opportunities for palliative care in LATAM. These challenges are integrating palliation into healthcare systems; public policy and funding; therapeutic obstinacy; changing demographics; access to services; analgesia; the role of religion, spirituality, and folk medicine; social determinants of palliative care; low health literacy; and limited clinician training. Some of the LATAM nations have palliative programs and palliative care training in place while others are developing these systems. Integrating this care into existing healthcare and reimbursement systems has been a challenge. A notable challenge in LATAM is also access to care since palliative programs tend to cluster in metropolitan areas and create hardships for rural citizens to access them. The better-defined role of familial caregivers and telehealth may be important factors in the expansion of palliative care in LATAM and beyond.
PubMed: 38899235
DOI: 10.7759/cureus.60698 -
Kidney International Reports Jun 2024[This corrects the article DOI: 10.1016/j.ekir.2024.02.1225.].
Erratum to "WCN24-966 THE EFFECT OF HOME-BASED TELE-EXERCISE ON ANEMIA IN PERITONEAL DIALYSIS PATIENTS: A RANDOMIZED CONTROLLED TRIAL" [ Volume 9, Issue 4, Supplement, April 2024, Page S584].
[This corrects the article DOI: 10.1016/j.ekir.2024.02.1225.].
PubMed: 38899209
DOI: 10.1016/j.ekir.2024.04.032 -
Cancer Medicine Jun 2024Nutritional impairment is associated with treatment toxicity and worse overall survival in patients with cancer. We aimed to (1) evaluate the association of nutritional... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
Nutritional impairment is associated with treatment toxicity and worse overall survival in patients with cancer. We aimed to (1) evaluate the association of nutritional impairment with psychological health and quality of life (QOL) and (2) examine which measures of nutrition had the strongest association with psychological health and QOL among older adults receiving cancer treatment with palliative intent.
METHODS
This secondary analysis was performed on baseline data from a nationwide cluster randomized clinical trial (ClinicalTrials.gov identifier: NCT02107443; PI: Mohile). Adults age ≥70 with advanced cancer and ≥1 geriatric assessment (GA) impairment were enrolled from 2014 to 2017. In line with geriatric oncology standards, we defined nutritional impairment as Mini Nutritional Assessment Short Form (MNA-SF) ≤11, body mass index (BMI) <21 kg/m, or >10% involuntary weight loss in the past 6 months. We conducted multivariable linear regressions to evaluate the association of nutritional impairment with each measure of psychological health and QOL: Geriatric Depression Scale (GDS-15, range 0-15), Generalized Anxiety Disorder-7 (GAD-7, range 0-21), NCCN Distress Thermometer (NCCN DT, range 0-10), and Functional Assessment of Cancer Therapy-General (FACT-G, range 0-108). Analyses were adjusted for patient demographics, clinical characteristics, and GA.
RESULTS
Among 541 patients, the mean age was 77 (range 70-96) and 60% had nutritional impairment. Mean baseline scores: GDS-15 3.1 (SD 2.7), GAD-7 2.9 (SD 4.0), NCCN DT 2.9 (SD 2.7), and FACT-G 80 (SD 15). In the adjusted model, compared to those with no nutritional impairment, older adults with nutritional impairment had greater depression (β = 0.79, 95% CI 0.36-1.23) and anxiety severity (β = 0.86, 95% CI 0.19-1.53), and worse QOL (β = -6.31, 95% CI -8.62 to -4.00). Of the measures of nutrition, MNA-SF ≤11 demonstrated the strongest associations with depression, anxiety, distress, and QOL.
CONCLUSION
Nutritional impairment is associated with impaired psychological health and worse QOL. Clinicians should use the MNA-SF to screen older adults for nutritional impairment and offer tailored supportive interventions.
Topics: Humans; Quality of Life; Aged; Male; Female; Neoplasms; Geriatric Assessment; Aged, 80 and over; Nutritional Status; Mental Health; Nutrition Assessment; Malnutrition; Palliative Care; Depression
PubMed: 38898664
DOI: 10.1002/cam4.7348 -
Palliative Medicine Jun 2024Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people...
Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study.
BACKGROUND
Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed.
AIM
To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness.
DESIGN
A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis.
SETTING/PARTICIPANTS
Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness.
RESULTS
Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations).
CONCLUSIONS
Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.
PubMed: 38898648
DOI: 10.1177/02692163241259667