-
Lung Cancer (Amsterdam, Netherlands) Jun 2024Complementary medicine and integrative oncology modalities (IOM) have been included in the clinical practice guidelines of the American College of Chest Physicians in...
INTRODUCTION
Complementary medicine and integrative oncology modalities (IOM) have been included in the clinical practice guidelines of the American College of Chest Physicians in the treatments of patients with lung cancer. The present study examined the impact of a patient-tailored IOM treatment program on quality of life (QoL)-related concerns among patients with non-small and small lung cancer undergoing active oncology treatment.
METHODS
This controlled study was pragmatic and prospective assessing the adherence among patients referred by their oncology healthcare provider to an integrative physician consultation, followed by 6 weekly IOM treatments addressing QoL-related concerns. High adherence to integrative care (high-AIC, vs. low-AIC) was defined as attending ≥4 IOM sessions. Symptoms were assessed using the ESAS (Edmonton Symptom Assessment Scale), EORTC QLQ-C30 (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), and MYCAW (Measure Yourself Concerns and Wellbeing) tools, at baseline and 6 weeks.
RESULTS
Of 153 patients, 74 (48 %) were high-AIC, with baseline demographic, cancer-and QoL-related characteristics similar to those of low-AIC patients. At 6 weeks, high-AIC patients reported greater improvement on MYCAW well-being (p = 0.036), with within-group improvement observed for EORTC pain (p = 0.021) and emotional functioning (p = 0.041); and for ESAS depression (p = 0.005), with borderline significance for EORTC sleep (p = 0.06).
CONCLUSION
High adherence to a 6-week IOM program within supportive/palliative care for patients with lung cancer was found to alleviate pain and emotional concerns, improving overall QoL. Further research is needed to confirm the findings in real-life IOM practice for patients with lung cancer.
PubMed: 38941654
DOI: 10.1016/j.lungcan.2024.107857 -
JCO Oncology Practice Jun 2024The incidence of young-onset colorectal cancer (YOCRC; defined as patients who are diagnosed with CRC before age 50 years) is rising rapidly, and CRC is predicted to be...
PURPOSE
The incidence of young-onset colorectal cancer (YOCRC; defined as patients who are diagnosed with CRC before age 50 years) is rising rapidly, and CRC is predicted to be the leading cause of cancer death in this age group by 2030. Yet, there has been limited research into the experiences and needs of patients with YOCRC and their caregivers. The goal of this study was to better understand the experiences and needs of patients with YOCRC and their caregivers.
PATIENTS AND METHODS
Semistructured focus groups were conducted with patients with YOCRC, caregivers of patients with YOCRC, and bereaved caregivers of patients with YOCRC. Focus group discussion guides addressed the experience and impact of diagnosis and treatment of YOCRC. Results were analyzed using a thematic analysis informed by framework analysis.
RESULTS
Twenty patients and caregivers participated in three focus groups (eight patients, seven caregivers, and five bereaved caregivers). Four primary themes were identified: (1) feeling overwhelmed by the health care system and desiring patient navigation; (2) feeling isolated and wanting opportunities for peer support; (3) life disruption because of difficulty juggling multiple roles and desiring psychosocial support; and (4) enthusiasm about participation in research and genetic testing.
CONCLUSION
This study identified and described the unique experiences and care needs of patients with YOCRC and their caregivers. The findings provide evidence that specialized models of care are needed. The results of this study informed the development of a center dedicated to the care of patients with YOCRC.
PubMed: 38941570
DOI: 10.1200/OP.24.00002 -
PLOS Global Public Health 2024Patients' experiences in the intensive care unit (ICU) can enhance or impair their subsequent recovery. Improving patient and family experiences on the ICU is an...
Patients' experiences in the intensive care unit (ICU) can enhance or impair their subsequent recovery. Improving patient and family experiences on the ICU is an important part of providing high quality care. There is little evidence to guide how to do this in a South Asian critical care context. This study addresses this gap by exploring the experiences of critically ill patients and their families in ICUs in Bangladesh and India. We elicit suggestions for improvements from patients, families and staff and highlight examples of practices that support person-centred care. This multi-site hospital ethnography was carried out in five ICUs in government hospitals in Bangladesh and India, selected using purposive sampling. Qualitative data were collected using non-participant observation and semi-structured interviews and analysed using reflexive thematic analysis. A total of 108 interviews were conducted with patients, families, and ICU staff. Over 1000 hours of observation were carried out across the five study sites. We identified important mediators of patient and family experience that span many different aspects of care. Factors that promote person-centred care include access to ICU for families, support for family involvement in care delivery, clear communication with patients and families, good symptom management for patients, support for rehabilitation, and measures to address the physical, environmental and financial needs of the family. This study has generated a list of recommendations that can be used by policy makers and practitioners who wish to implement person-centred principles in the ICU.
PubMed: 38941335
DOI: 10.1371/journal.pgph.0003372 -
Revista de La Facultad de Ciencias... Jun 2024Primary caregivers of family members undergoing palliative care provide significant care, and as a result, their quality of life may be adversely affected. A systematic... (Review)
Review
Primary caregivers of family members undergoing palliative care provide significant care, and as a result, their quality of life may be adversely affected. A systematic review was conducted to synthesize the evidence on caregiver’s quality of life. Pubmed database and the digital library of the Universidad Católica Argentina were used. Thirteen articles were reviewed that addressed the following topics: general quality of life, impact on physical, emotional, social and spiritual dimensions, relationship between caregiver gender and quality of life. It is evident in the literature reviewed the importance of an adequate assessment of signs and symptoms in family caregivers in order to provide comprehensive assistance to promote their quality of life.
Topics: Humans; Caregivers; Palliative Care; Quality of Life; Family; Female; Male
PubMed: 38941217
DOI: 10.31053/1853.0605.v81.n2.44824 -
Journal of Nephrology Jun 2024Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges.... (Review)
Review
Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges. Despite existing legal frameworks, disparities in advance care planning practices are evident across Europe. The present perspective introduces a multidisciplinary model, initiated in 2019. This model incorporates a specialized team comprising a nephrologist, a psychologist, a palliative care specialist, and an anesthesiologist/intensivist. Through this collaborative approach, we aimed to comprehensively address the intricate medical, emotional, and psychological dimensions in advance care planning. In this point of view, we discuss the strengths of our model, its potential for European Nephrology, and advocate for guidelines to enhance advance care planning implementation within the nephrology community.
PubMed: 38941001
DOI: 10.1007/s40620-024-02002-w -
European Journal of Pediatrics Jun 2024The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The...
UNLABELLED
The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese screening tool. We aimed to translate and perform a cultural adaptation to the Italian setting of the Paediatric Palliative Screening Scale. This paper was a descriptive observational cross-sectional study. We carried it out in two consecutive steps: (1) translation and back translation and (2) cultural adaptation through a Delphi process. Twenty Paediatric Palliative Care national experts were invited to judge the content and structure of the translated scale and to assess the appropriateness and clarity of each question. Consensus was defined as 70% or more of experts agreeing with each item's appropriateness and clarity. The Italian version of the Paediatric Palliative Screening Scale was obtained after two rounds of Delphi. After the second round of consultation, a substantial increase in experts' consensus was found, especially for questions 1.1, 3.2 and 3.3 (from 56.3 to 93.8%), and reaching more than 83% for all the revised items.
CONCLUSIONS
The Paediatric Palliative Screening Scale is a reliable tool that can assist in timely evaluating children who qualify for Paediatric Palliative Care. The tool can be used in Italian healthcare settings with its cultural adaptation.
WHAT IS KNOWN
• Despite the lack of early diagnosis techniques, there is a significant increase in the number of children entitled to Paediatric Palliative Care. • A specific screening tool called the Paediatric Palliative Screening Scale determines a child's suitability for paediatric palliative treatment.
WHAT IS NEW
• The Paediatric Palliative Screening Scale is necessary to assess the psychosocial needs of patients eligible for Paediatric Palliative Care. The Italian scale has good content and face validity ensuring equivalence between the original and target populations.
PubMed: 38940924
DOI: 10.1007/s00431-024-05649-6 -
The Oncologist Jun 2024Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and...
BACKGROUND
Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status.
PATIENTS AND METHODS
We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care.
RESULTS
With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .001).
CONCLUSIONS
The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.
PubMed: 38940449
DOI: 10.1093/oncolo/oyae159 -
Acta Medica Philippina 2024Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single...
BACKGROUND
Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single questionnaire that fits all purposes and individuals. An important challenge to QOL assessments in palliative care is the highly diverse patient population with different diagnoses, disease states/prognosis, and languages. In an outpatient palliative care clinic population, FACIT-Pal-14 proved to be a valid and reliable scale in palliative care patients.
OBJECTIVES
We aimed to (i) determine the psychometric properties of the Tagalog version of the Functional Assessment of Chronic Illness Therapy - Palliative Care - 14 (FACIT-Pal-14) and (ii) measure the Quality of Life (QOL) of Filipino cancer patients.
METHODS
This was a cross-sectional study. License for the use of the Tagalog version 4 of the FACIT-Pal-14 was requested from FACIT.org. To know the psychometric properties of the scales, Cronbach's alpha coefficient was used to assess reliability, and exploratory factor analysis, Pearson correlations, and independent samples T-test were used to determine validity.
RESULTS
The Tagalog FACIT-Pal-14 was administered to 500 Filipino cancer patients consulting at the outpatient department of a training and regional medical center. The participants were mostly female (65.5%), aged 64 years and younger (82.6%), and had breast cancer (53.2%), colorectal cancer (19.2%), and lung cancer (9.4%). The mean Tagalog FACIT-Pal-14 score was 47.35 out of 56 (SD=7.14). The Cronbach's alpha coefficient of the Tagalog version of FACIT-Pal-14 was 0.784. Significantly lower mean Tagalog FACIT-Pal-14 scores were found in patients with Karnofsky Performance Status (KPS) 70 and lower, and Eastern Cooperative Oncology Group Performance Status (ECOG-PS) 2 and above compared with patients with KPS 80 and higher and ECOG-PS 0-1. (t=3.439, p<.001). While the Tagalog FACIT-Pal-14 scores, KPS, and ECOG scores only revealed a very weak, positive correlation (r=0.095; p <0.05), this ability to distinguish between groups known to differ regarding performance status showed the construct validity of the Tagalog FACIT-Pal-14.
CONCLUSIONS
In an outpatient oncology clinic population, the FACIT-Pal 14 showed evidence of reliability and construct validity for evaluating palliative care-specific QOL in Filipino cancer patients. Using this measure, Filipino cancer patients have a good QOL. Therefore, it is recommended that the Tagalog FACIT-Pal-14 be used on subsequent patient follow-ups to assess how their QOL would change over time so that the palliative care services provided will be suited to their needs.
PubMed: 38939424
DOI: 10.47895/amp.vi0.7804 -
Australian Occupational Therapy Journal Jun 2024The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in...
INTRODUCTION
The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner.
METHODS
This study took place in a not-for-profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one-on-one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach.
CONSUMER AND COMMUNITY INVOLVEMENT
This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration.
RESULTS
Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia.
CONCLUSION
Adapting a community-based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale.
PLAIN LANGUAGE SUMMARY
Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence-based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual.
PubMed: 38937870
DOI: 10.1111/1440-1630.12978 -
BMC Psychiatry Jun 2024Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal... (Meta-Analysis)
Meta-Analysis
A qualitative meta-synthesis of service users' and carers' experiences of assessment and involuntary hospital admissions under mental health legislations: a five-year update.
BACKGROUND
Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal and service reforms in various countries are intended to reduce rates of detention and improve service user experience. We aimed to inform policy and service delivery by providing an up-to-date synthesis of qualitative evidence on service users' and carers' experiences of assessment and detention under mental health legislation, updating previous reviews in which we searched for literature published up to 2018.
METHODS
We searched five bibliographic databases for studies published between January 2018 and March 2023. We identified 24 additional studies reporting qualitative investigations of service users' or carers' experiences of assessment or detention under mental health legislation. A team including researchers with relevant personal experience analysed and synthesised data using a thematic synthesis approach.
RESULTS
Findings suggest that views on compulsory admissions and assessment varied: many reports highlighted its often negative, traumatic impacts on emotional well-being and self-worth, with fewer accounts of it as an opportunity to access help and support, accompanied by feelings of relief. Experiences of racial discrimination, inequality of access, and dissatisfaction with support before and after hospital stay were more prominent than in our previous reviews.
CONCLUSIONS
Increasing service user and carer involvement in treatment decisions, provision of timely information at key stages of the admission process, training of key personnel, addressing the issue of discrimination, and investing in community alternatives of inpatient care may contribute to and lead to better overall treatment experiences.
PROTOCOL REGISTRATION
The study protocol has been registered in the PROSPERO database on 30th May 2023 (CRD42023423439).
Topics: Humans; Caregivers; Commitment of Mentally Ill; Qualitative Research; Hospitals, Psychiatric; Mental Disorders; Mental Health Services
PubMed: 38937705
DOI: 10.1186/s12888-024-05914-w