Pub Date : 2024-08-28DOI: 10.1101/2024.08.26.24312600
Disha Agrawal, Divya Shrinivas, Parth Sharma, M R Rajagopal, Arun Ghoshal, Siddhesh Zadey
Objectives: Essential Medicines Lists (EMLs) guide the public sector procurement and supply of medications to impact access to adequate and appropriate palliative care drugs. This study evaluates the adequacy of India's national and sub-national EMLs that can directly impact palliative care for 5.4 million patients. Methods: In this qualitative document review, we compared Indian national, and state EMLs acquired from official government websites with the International Association for Hospice & Palliative Care (IAHPC) EML recommendations. We analysed data on the indication and formulation of drugs under the different categories of formulations present (all, some, and no), and drugs absent. Literature review and inputs from palliative care experts provided alternatives of absent medications to assess the adequacy of lists in managing the symptoms listed by IAPHC. Results: We analysed 3 national and 25 state lists for 33 recommended drugs. The Central Government Health Services list had the maximum availability of all formulations of drugs (16 [48%]) nationally. Among states and union territories, the Delhi EML was the closest to IAHPC with 17 (52%) drugs with all formulations present. Nagaland had the most incomplete EML with only 3 (9%) drugs with all formulations present. No EML had all the recommended formulations of morphine. In one national and sixteen state EMLs, oral morphine was absent. Conclusion: While Indian EMLs lack drugs for palliative care when compared with the IAHPC EML, symptom management is adequate. There is a need for countries with limited resources to modify the IAPHC list for their settings.
{"title":"An evaluation of the adequacy of Indian national and state Essential Medicines Lists (EMLs) for palliative care medical needs - a comparative analysis","authors":"Disha Agrawal, Divya Shrinivas, Parth Sharma, M R Rajagopal, Arun Ghoshal, Siddhesh Zadey","doi":"10.1101/2024.08.26.24312600","DOIUrl":"https://doi.org/10.1101/2024.08.26.24312600","url":null,"abstract":"Objectives: Essential Medicines Lists (EMLs) guide the public sector procurement and supply of medications to impact access to adequate and appropriate palliative care drugs. This study evaluates the adequacy of India's national and sub-national EMLs that can directly impact palliative care for 5.4 million patients. Methods: In this qualitative document review, we compared Indian national, and state EMLs acquired from official government websites with the International Association for Hospice & Palliative Care (IAHPC) EML recommendations. We analysed data on the indication and formulation of drugs under the different categories of formulations present (all, some, and no), and drugs absent. Literature review and inputs from palliative care experts provided alternatives of absent medications to assess the adequacy of lists in managing the symptoms listed by IAPHC. Results: We analysed 3 national and 25 state lists for 33 recommended drugs. The Central Government Health Services list had the maximum availability of all formulations of drugs (16 [48%]) nationally. Among states and union territories, the Delhi EML was the closest to IAHPC with 17 (52%) drugs with all formulations present. Nagaland had the most incomplete EML with only 3 (9%) drugs with all formulations present. No EML had all the recommended formulations of morphine. In one national and sixteen state EMLs, oral morphine was absent. Conclusion: While Indian EMLs lack drugs for palliative care when compared with the IAHPC EML, symptom management is adequate. There is a need for countries with limited resources to modify the IAPHC list for their settings.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"108 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142178420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objective: Palliative care training at the undergraduate level is poor in India. With the need for palliative care rising in India and globally, it is possible to train physicians in resource-limited settings in palliative care via online training programs owing to ease of access and convenience. However, there is limited evidence available from India on the development and implementation of such a training program. This study aims to describe the development of an online training program offered by the Trivandrum Institute of Palliative Sciences (TIPS), Kerala, and the impact of the program on the confidence of physicians in managing various palliative care needs of their patients. Material and Methods: The course was developed by an interdisciplinary expert team from TIPS. The course content was made keeping in mind the local sociocultural factors in India and was peer-reviewed by two external experts. The program was started in 2018 and updated and revised over the years. Currently, the program has 20 sessions, each lasting for 90 minutes. The course content was disseminated using project-ECHOs tele mentoring model. To assess the impact of the training program, self-reported change in confidence from twenty-two batches of physicians, trained from January 2020 to August 2023. Feedback from participants was also assessed to identify areas of improvement in the training program. Results: A total of 1159 physicians were trained during the study period. At the end of the course, 51.2% of the participants completed the evaluation survey and had a statistically significant (p<0.05) improvement in confidence in pain, gastrointestinal symptoms and breathlessness management, morphine prescription, and psychosocial communication. The duration of each session and the entire course was reported to be ideal by 88.6% and 87.9% of participants, respectively. Conclusion: Our results show that online training can be effectively used to build confidence in physicians in managing various palliative care needs.
目的：在印度，本科阶段的姑息关怀培训很薄弱。随着印度和全球对姑息关怀的需求不断增加，在资源有限的环境下，通过在线培训项目对医生进行姑息关怀培训是可行的，因为这样既容易获得又方便。然而，印度在此类培训项目的开发和实施方面提供的证据有限。本研究旨在描述喀拉拉邦特里凡得琅姑息治疗科学研究所（Trivandrum Institute of Palliative Sciences，TIPS）提供的在线培训项目的发展情况，以及该项目对医生管理病人各种姑息关怀需求的信心的影响：该课程由 TIPS 的跨学科专家团队开发。课程内容考虑了印度当地的社会文化因素，并由两名外部专家进行了同行评审。该课程于 2018 年启动，历经数年更新和修订。目前，该课程共有 20 节，每节课 90 分钟。课程内容采用项目-ECOs 远程指导模式进行传播。为了评估培训计划的影响，从2020年1月至2023年8月接受培训的22批医生自我报告了信心的变化。此外，还对参与者的反馈意见进行了评估，以确定培训计划需要改进的地方：研究期间，共有 1159 名医生接受了培训。课程结束时，51.2%的学员完成了评估调查，他们在疼痛、胃肠道症状和憋气处理、吗啡处方和社会心理沟通方面的信心有了显著提高（p<0.05）。分别有 88.6% 和 87.9% 的参与者对每次课程和整个课程的持续时间表示满意：我们的研究结果表明，在线培训可以有效地帮助医生建立处理各种姑息关怀需求的信心。
{"title":"Development and evaluation of an online training program for palliative care in India","authors":"Varun Raj Passi, Sreedevi Warrier, Rajalekshmi Balu, Sunilkumar MM, Parth Sharma","doi":"10.1101/2024.08.26.24312585","DOIUrl":"https://doi.org/10.1101/2024.08.26.24312585","url":null,"abstract":"Objective: Palliative care training at the undergraduate level is poor in India. With the need for palliative care rising in India and globally, it is possible to train physicians in resource-limited settings in palliative care via online training programs owing to ease of access and convenience. However, there is limited evidence available from India on the development and implementation of such a training program. This study aims to describe the development of an online training program offered by the Trivandrum Institute of Palliative Sciences (TIPS), Kerala, and the impact of the program on the confidence of physicians in managing various palliative care needs of their patients.\u0000Material and Methods: The course was developed by an interdisciplinary expert team from TIPS. The course content was made keeping in mind the local sociocultural factors in India and was peer-reviewed by two external experts. The program was started in 2018 and updated and revised over the years. Currently, the program has 20 sessions, each lasting for 90 minutes. The course content was disseminated using project-ECHOs tele mentoring model. To assess the impact of the training program, self-reported change in confidence from twenty-two batches of physicians, trained from January 2020 to August 2023. Feedback from participants was also assessed to identify areas of improvement in the training program.\u0000Results: A total of 1159 physicians were trained during the study period. At the end of the course, 51.2% of the participants completed the evaluation survey and had a statistically significant (p<0.05) improvement in confidence in pain, gastrointestinal symptoms and breathlessness management, morphine prescription, and psychosocial communication. The duration of each session and the entire course was reported to be ideal by 88.6% and 87.9% of participants, respectively.\u0000Conclusion: Our results show that online training can be effectively used to build confidence in physicians in managing various palliative care needs.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"9 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142178421","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The current legal framework in Greece does not permit withholding medical interventions to allow natural death, leading to a lack of documented advance directives to guide clinical practice. The aim of this pilot descriptive study is to culturally adapt the Physician Orders for Life-Sustaining Treatment (POLST) form, and use it as a framework with which to assess the readiness of Greek residents for discussions on medical care near the end of life. Patients with severely limited prognosis and/or their family members were interviewed by attending physicians who then recorded their wish with regards to Do-Not-Resuscitate (DNR) status on the adapted POLST form, as well as their level of agreement with signing a similar form. Thirty-one patients with an age range of 18 to 109 years old participated. All had severe prognosis due to various end-stage diseases. Sixteen patients (51.6%) wished for DNR status and did not wish for further intervention in case they suffered cardio-respiratory arrest. Presence of an end-stage malignancy was associated with a higher chance of DNR preference (OR: 8.8, 95%CI 1.5-50, p = 0.017) or comfort measures only (OR: 5.6, 95%CI 1.1-30, p = 0.05). This pilot study of patients with severe prognosis hospitalized in a tertiary care center in Greece showed preliminary evidence of high acceptance of natural death and DNR status. POLST forms could be used as a framework for advance care planning through shared decision-making, thus reducing unwarranted treatments and enhancing trust between healthcare professionals and patients at the end of life.
{"title":"Cross-Cultural Adaptation of the Physician Orders for Life-Sustaining Treatment Form in Greece; a pilot cross-sectional descriptive study","authors":"Dimitrios Chris Moustakas, Alexia Bani, Eleni Ntalaouti, Nikolaos Vechlidis, Charalampos Charalampidis, Stamatios Chalvatzis, Sotiria Grigoropoulou, Stylianos Faltsetas, Dimitrios T. Boumpas, Evrydiki Kravvariti, Theodoros Trokanas, Effy Vayena, Sotirios Tsiodras","doi":"10.1101/2024.08.14.24311981","DOIUrl":"https://doi.org/10.1101/2024.08.14.24311981","url":null,"abstract":"The current legal framework in Greece does not permit withholding medical interventions to allow natural death, leading to a lack of documented advance directives to guide clinical practice. The aim of this pilot descriptive study is to culturally adapt the Physician Orders for Life-Sustaining Treatment (POLST) form, and use it as a framework with which to assess the readiness of Greek residents for discussions on medical care near the end of life. Patients with severely limited prognosis and/or their family members were interviewed by attending physicians who then recorded their wish with regards to Do-Not-Resuscitate (DNR) status on the adapted POLST form, as well as their level of agreement with signing a similar form. Thirty-one patients with an age range of 18 to 109 years old participated. All had severe prognosis due to various end-stage diseases. Sixteen patients (51.6%) wished for DNR status and did not wish for further intervention in case they suffered cardio-respiratory arrest. Presence of an end-stage malignancy was associated with a higher chance of DNR preference (OR: 8.8, 95%CI 1.5-50, p = 0.017) or comfort measures only (OR: 5.6, 95%CI 1.1-30, p = 0.05). This pilot study of patients with severe prognosis hospitalized in a tertiary care center in Greece showed preliminary evidence of high acceptance of natural death and DNR status. POLST forms could be used as a framework for advance care planning through shared decision-making, thus reducing unwarranted treatments and enhancing trust between healthcare professionals and patients at the end of life.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"10 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142178422","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-24DOI: 10.1101/2024.07.24.24310939
Joseph Hawkins, Megan C Lester
Objectives: This study tested the use of the Palliative Prognostic Index (PPI), an established cancer prognostic tool, in a general medicine group within an acute setting for non-selective adult palliative care. The PPI score ranges from 0 to 15, with scores <6 indicating a prognosis of over 6 weeks and scores >6 indicating under 3 weeks. Methods: Data from 256 patients seen over three months by the Ashford and St Peters NHS Foundation Trust Palliative Care team were analysed. PPI scores were calculated and correlated with patients date of death (DoD) to evaluate predictive value. ASPH is a medium sized hospital in England with 500 adult beds. Results: Among 256 patients, 145 had cancer and 111 had non-malignant disease. Higher PPI scores correlated with more accurate prognostic predictions, with an overall prediction accuracy of 70%. Conclusions: The study demonstrates the PPI tool value for mixed groups of non-malignant and malignant diseases. The ASPH population is representative of most UK areas, suggesting that the PPI tool can guide timely care decisions in general medical settings.
{"title":"Utilising the Palliative Prognostic Index in a mixed non-malignant and malignant patient group to determine prognosis. A general medicine tool for prognostication","authors":"Joseph Hawkins, Megan C Lester","doi":"10.1101/2024.07.24.24310939","DOIUrl":"https://doi.org/10.1101/2024.07.24.24310939","url":null,"abstract":"Objectives: This study tested the use of the Palliative Prognostic Index (PPI), an established cancer prognostic tool, in a general medicine group within an acute setting for non-selective adult palliative care. The PPI score ranges from 0 to 15, with scores <6 indicating a prognosis of over 6 weeks and scores >6 indicating under 3 weeks. Methods: Data from 256 patients seen over three months by the Ashford and St Peters NHS Foundation Trust Palliative Care team were analysed. PPI scores were calculated and correlated with patients date of death (DoD) to evaluate predictive value. ASPH is a medium sized hospital in England with 500 adult beds. Results: Among 256 patients, 145 had cancer and 111 had non-malignant disease. Higher PPI scores correlated with more accurate prognostic predictions, with an overall prediction accuracy of 70%. Conclusions: The study demonstrates the PPI tool value for mixed groups of non-malignant and malignant diseases. The ASPH population is representative of most UK areas, suggesting that the PPI tool can guide timely care decisions in general medical settings.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"81 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141775878","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-27DOI: 10.1101/2024.06.26.24309516
Leslie Rose
Scientifically implausible treatments are offered by some hospital cancer departments. Examples are reiki, aromatherapy, and reflexology. Salaried practitioners are employed to deliver these therapies, which are provided as palliative care, although they lack evidence of effectiveness. Such practices seem to conflict with efforts to make health care evidence based. The aim of this survey was to estimate the extent of certain pseudoscientific practices in cancer care departments in NHS hospitals in England, and to evaluate the rationale for such provision. Relevant documents were requested from NHS Trusts under the Freedom of Information Act 2000 (FOIA). Main outcome measures were: number of trusts offering pseudoscientific practices in cancer departments, time to full FOIA response, presence and content of practice governance documents, and presence and quality of evidence for practices. 13.6% of eligible NHS trusts were offering pseudoscientific clinical practices. No trust provided a valid business case, or any robust evidence for the practices. The governance documents included claims about chakras, meridians, and invisible energy. Ten trusts required that informed consent be obtained from patients. This could not have been obtained because information given was misleading. Conclusions Pseudoscientific practices are embedded in the NHS in England, and governance documents show poor understanding of clinical evidence.
{"title":"Pseudoscience in Cancer Services; a survey of National Health Service Trusts in England","authors":"Leslie Rose","doi":"10.1101/2024.06.26.24309516","DOIUrl":"https://doi.org/10.1101/2024.06.26.24309516","url":null,"abstract":"Scientifically implausible treatments are offered by some hospital cancer departments. Examples are reiki, aromatherapy, and reflexology. Salaried practitioners are employed to deliver these therapies, which are provided as palliative care, although they lack evidence of effectiveness. Such practices seem to conflict with efforts to make health care evidence based.\u0000The aim of this survey was to estimate the extent of certain pseudoscientific practices in cancer care departments in NHS hospitals in England, and to evaluate the rationale for such provision.\u0000Relevant documents were requested from NHS Trusts under the Freedom of Information Act 2000 (FOIA). Main outcome measures were: number of trusts offering pseudoscientific practices in cancer departments, time to full FOIA response, presence and content of practice governance documents, and presence and quality of evidence for practices.\u000013.6% of eligible NHS trusts were offering pseudoscientific clinical practices. No trust provided a valid business case, or any robust evidence for the practices. The governance documents included claims about chakras, meridians, and invisible energy. Ten trusts required that informed consent be obtained from patients. This could not have been obtained because information given was misleading.\u0000Conclusions\u0000Pseudoscientific practices are embedded in the NHS in England, and governance documents show poor understanding of clinical evidence.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"58 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141505366","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Introduction Oral cancer is the most common among Sri Lankan males leading to psychological distress due to its impact on the appearance and vital functions. While the negative effects of psychological distress on these patients are well known, its prevalence and associated factors remain largely unknown in Sri Lanka. This study aimed to assess the prevalence and the associated factors of psychological distress among a selected patient cohort with oral cancer in Sri Lanka. Methods A hospital-based cross-sectional study was conducted among 355 patients with oral cancer to assess the prevalence of psychological distress. A nested case-control study among 140 (per arm) patients evaluated the associated factors for psychological distress. The multivariate analysis was carried out to identify significant factors associated with psychological distress. Results The prevalence of psychological distress among patients with oral cancer was 31.0% (95% CI = 27.8%- 35.3%). Being <50 years of age (Adjusted Odds Ratio (AOR)= 1.2, 95% CI= 0.7- 1.7, p= 0.006), having pain (AOR (Adjusted Odds Ratio)= 44.7, 95% CI= 34-53.21, p=0.001 ), late stages of cancer at the diagnosis (AOR= 10.7, 95% CI= 1.07- 28.78, p=0.04), being worried about basic functional disabilities (AOR= 11.4, 95% CI= 10.3- 14.8, p=0.006) and the two psychological factors emerged as significant independent factors that were associated with increased risk of psychological distress among patients with oral cancer. Conclusion One-third of patients with oral cancer in the selected tertiary care hospitals suffered from psychological distress indicating its high prevalence. Our findings on associated factors of psychological distress in patients with oral cancer have contributed to the development of an intervention strategy to reduce psychological distress in this population.
{"title":"Prevalence and associated factors of psychological distress among patients with oral cancer in Sri Lanka","authors":"Nadisha Ratnasekera, Irosha Perera, Pushpakumara Kandapola Arachchige, Sumeth Perera, Prasanna Jayasekara","doi":"10.1101/2024.06.21.24309294","DOIUrl":"https://doi.org/10.1101/2024.06.21.24309294","url":null,"abstract":"Introduction\u0000Oral cancer is the most common among Sri Lankan males leading to psychological distress due to its impact on the appearance and vital functions. While the negative effects of psychological distress on these patients are well known, its prevalence and associated factors remain largely unknown in Sri Lanka. This study aimed to assess the prevalence and the associated factors of psychological distress among a selected patient cohort with oral cancer in Sri Lanka.\u0000Methods\u0000A hospital-based cross-sectional study was conducted among 355 patients with oral cancer to assess the prevalence of psychological distress. A nested case-control study among 140 (per arm) patients evaluated the associated factors for psychological distress. The multivariate analysis was carried out to identify significant factors associated with psychological distress.\u0000Results\u0000The prevalence of psychological distress among patients with oral cancer was 31.0% (95% CI = 27.8%- 35.3%). Being <50 years of age (Adjusted Odds Ratio (AOR)= 1.2, 95% CI= 0.7- 1.7, p= 0.006), having pain (AOR (Adjusted Odds Ratio)= 44.7, 95% CI= 34-53.21, p=0.001 ), late stages of cancer at the diagnosis (AOR= 10.7, 95% CI= 1.07- 28.78, p=0.04), being worried about basic functional disabilities (AOR= 11.4, 95% CI= 10.3- 14.8, p=0.006) and the two psychological factors emerged as significant independent factors that were associated with increased risk of psychological distress among patients with oral cancer.\u0000Conclusion\u0000One-third of patients with oral cancer in the selected tertiary care hospitals suffered from psychological distress indicating its high prevalence. Our findings on associated factors of psychological distress in patients with oral cancer have contributed to the development of an intervention strategy to reduce psychological distress in this population.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"186 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141505367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-20DOI: 10.1101/2024.06.19.24309169
Jacqueline Birtwistle, Amy M Russell, Samuel Relton, Hannah Easdown, Usha Grieve, Matthew Allsop
Objective: To explore patient and public experiences of and priorities for the use of shared patient health records for advance care planning. Methods: A convergent-parallel mixed method design was used. An online national survey of patients and the public gathered data on experiences and views of sharing health and advance care planning information to support care at the end of life. Descriptive statistics were used to analyse rating scale responses (5 or 10-point scale) and thematic analysis applied to free-text responses. Results: Responses (N=1728) included participants in 103 UK counties, including people with a terminal condition (n=33), long-term condition (n=442), who provide or have provided care to a person with a long-term or terminal illness (n=229), and who identified as healthy and interested in planning for the future (n=1024). Confidence that recorded care preferences would be accessed when needed was low for carers (median= 2, IQR 1-4) and moderate for patients (median=3, IQR 1-4). Four themes derived from free-text responses included: i) Experience of sharing health information; ii) Preparation, communication and understanding; iii) Concerns, unknowns and assurance seeking, and; iv) Preserving Dignity and Respect: Understanding individual contexts. Conclusions: Whilst recognising the potential of sharing health records, respondents and in particular carers, doubted that patient information would be accessed by relevant health professionals when needed. Future research is required to explore whether patient and carer access to the record influences their confidence in the accuracy of the content and the likelihood of care being delivered in line with their wishes.
{"title":"Patient and public experience and views on digital systems for sharing records for health and care preferences at the end of life","authors":"Jacqueline Birtwistle, Amy M Russell, Samuel Relton, Hannah Easdown, Usha Grieve, Matthew Allsop","doi":"10.1101/2024.06.19.24309169","DOIUrl":"https://doi.org/10.1101/2024.06.19.24309169","url":null,"abstract":"Objective: To explore patient and public experiences of and priorities for the use of shared patient health records for advance care planning. Methods: A convergent-parallel mixed method design was used. An online national survey of patients and the public gathered data on experiences and views of sharing health and advance care planning information to support care at the end of life. Descriptive statistics were used to analyse rating scale responses (5 or 10-point scale) and thematic analysis applied to free-text responses. Results: Responses (N=1728) included participants in 103 UK counties, including people with a terminal condition (n=33), long-term condition (n=442), who provide or have provided care to a person with a long-term or terminal illness (n=229), and who identified as healthy and interested in planning for the future (n=1024). Confidence that recorded care preferences would be accessed when needed was low for carers (median= 2, IQR 1-4) and moderate for patients (median=3, IQR 1-4). Four themes derived from free-text responses included: i) Experience of sharing health information; ii) Preparation, communication and understanding; iii) Concerns, unknowns and assurance seeking, and; iv) Preserving Dignity and Respect: Understanding individual contexts.\u0000Conclusions: Whilst recognising the potential of sharing health records, respondents and in particular carers, doubted that patient information would be accessed by relevant health professionals when needed. Future research is required to explore whether patient and carer access to the record influences their confidence in the accuracy of the content and the likelihood of care being delivered in line with their wishes.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"14 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141505368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This study comprehensively examines the medical needs and experiences of the lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) population—also referred to as sexual minorities—in Japan. It aims to bridge the existing gap in understanding the experiences of LGBTQ populations in accessing healthcare, and inform future healthcare reforms. In November 2022, a cross-sectional, web-based, anonymous survey was conducted targeting LGBTQ populations across Japan who had previously visited a medical institution. Participants were recruited through a private, web-based, survey company. Inclusion criteria included being 20 years old or above, having a record of medical visits, and experiencing distress or discomfort related to gender identity, gender, or sexual orientation. Survey items were developed based on previous research and preliminary interviews, to assess demographic characteristics, experiences with medical care, and preferences for end-of-life care. A total of 103 respondents with a diverse demographic profile from across Japan participated in the survey. Among sexual minorities whose gender identity differed from their birth assignment, significant challenges were reported, including distressful experiences related to assigned hospital rooms and difficulties accessing certain medical departments. LGBTQ individuals with non-heterosexual orientations also faced barriers to partner involvement in medical decision-making and care. This study underscores the need for healthcare reforms to address the challenges faced by LGBTQ individuals in Japan. Healthcare providers should create a more equitable and affirming healthcare system for all individuals, irrespective of sexual orientation or gender identity.
{"title":"Medical care needs and experiences of LGBTQ populations in Japan","authors":"Hiroyuki Otani, Tatsuya Morita, Hongja Kim, Kaori Aso, Misuzu Yuasa, Hideyuki Kashiwagi, Kiyofumi Oya, Akemi Shirado Naito","doi":"10.1101/2024.05.30.24308201","DOIUrl":"https://doi.org/10.1101/2024.05.30.24308201","url":null,"abstract":"This study comprehensively examines the medical needs and experiences of the lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) population—also referred to as sexual minorities—in Japan. It aims to bridge the existing gap in understanding the experiences of LGBTQ populations in accessing healthcare, and inform future healthcare reforms. In November 2022, a cross-sectional, web-based, anonymous survey was conducted targeting LGBTQ populations across Japan who had previously visited a medical institution. Participants were recruited through a private, web-based, survey company. Inclusion criteria included being 20 years old or above, having a record of medical visits, and experiencing distress or discomfort related to gender identity, gender, or sexual orientation. Survey items were developed based on previous research and preliminary interviews, to assess demographic characteristics, experiences with medical care, and preferences for end-of-life care. A total of 103 respondents with a diverse demographic profile from across Japan participated in the survey. Among sexual minorities whose gender identity differed from their birth assignment, significant challenges were reported, including distressful experiences related to assigned hospital rooms and difficulties accessing certain medical departments. LGBTQ individuals with non-heterosexual orientations also faced barriers to partner involvement in medical decision-making and care. This study underscores the need for healthcare reforms to address the challenges faced by LGBTQ individuals in Japan. Healthcare providers should create a more equitable and affirming healthcare system for all individuals, irrespective of sexual orientation or gender identity.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"320 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141256903","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-26DOI: 10.1101/2024.03.25.24304847
Anthony J Goodings, Mila A Pastrak, Sten H Kajitani, Elaine Cunningham, Hannah O'Brien, Catherine Weadick, Karie Dennehy
Objectives This study aims to characterize the patient population referred to the specialist palliative care service with a diagnosis of gynecological cancer. It also assesses referral frequency and response time in order to understand palliative care utilization in an acute hospital setting. Methods A retrospective chart review and database analysis was performed to extract data on demographics, cancer diagnoses, and referral reasons for patients referred to the specialist palliative care service over three years. The study focuses on identifying patterns in the characteristics of the referred patient population. Results Analysis of 162 patients revealed a distribution across cancer subtypes: 62% ovarian, 22% endometrial, 12% cervical, and 4% vulvar. A notable finding was that the outcomes for patients with ovarian cancer were more likely to be discharged home with or without community care (61.8%) compared to those with endometrial cancer (41.0%). A rapid response to referrals was observed, with 70% reviewed within three days and 98% within a week. This highlights the service's efficiency and the demographic and diagnostic profile of the patient served. Significance of Results This study gives insight into the demographic and diagnostic profiles of gynecological cancer patients referred for palliative care, alongside demonstrating rapid response to such referrals. Despite the rapid assessment times, the research importantly identifies differences in outcomes among different cancer subtypes, with a particular emphasis on the variance in discharge destinations. These findings reflect both patient preference and medical need, demonstrating the role of tailoring palliative care approaches to meet the individual needs and desires of this diverse patient population. Characterizing these patient profiles and outcomes serves as a crucial step in enhancing the effectiveness of palliative care strategies, with the ultimate goal of improving the quality of life for patients facing gynecological cancer.
{"title":"A Three-Year Retrospective Review of Gynecologic Oncology Referrals to the Specialist Palliative Care Team in a Tertiary Referral Centre: Population, Characteristics, and Outcomes","authors":"Anthony J Goodings, Mila A Pastrak, Sten H Kajitani, Elaine Cunningham, Hannah O'Brien, Catherine Weadick, Karie Dennehy","doi":"10.1101/2024.03.25.24304847","DOIUrl":"https://doi.org/10.1101/2024.03.25.24304847","url":null,"abstract":"Objectives\u0000This study aims to characterize the patient population referred to the specialist palliative care service with a diagnosis of gynecological cancer. It also assesses referral frequency and response time in order to understand palliative care utilization in an acute hospital setting. Methods\u0000A retrospective chart review and database analysis was performed to extract data on demographics, cancer diagnoses, and referral reasons for patients referred to the specialist palliative care service over three years. The study focuses on identifying patterns in the characteristics of the referred patient population. Results\u0000Analysis of 162 patients revealed a distribution across cancer subtypes: 62% ovarian, 22% endometrial, 12% cervical, and 4% vulvar. A notable finding was that the outcomes for patients with ovarian cancer were more likely to be discharged home with or without community care (61.8%) compared to those with endometrial cancer (41.0%). A rapid response to referrals was observed, with 70% reviewed within three days and 98% within a week. This highlights the service's efficiency and the demographic and diagnostic profile of the patient served. Significance of Results\u0000This study gives insight into the demographic and diagnostic profiles of gynecological cancer patients referred for palliative care, alongside demonstrating rapid response to such referrals. Despite the rapid assessment times, the research importantly identifies differences in outcomes among different cancer subtypes, with a particular emphasis on the variance in discharge destinations. These findings reflect both patient preference and medical need, demonstrating the role of tailoring palliative care approaches to meet the individual needs and desires of this diverse patient population. Characterizing these patient profiles and outcomes serves as a crucial step in enhancing the effectiveness of palliative care strategies, with the ultimate goal of improving the quality of life for patients facing gynecological cancer.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140300812","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-03-09DOI: 10.1101/2024.03.08.24303949
Zhi Zheng Yeo, Poh Heng Chong
Background: Young persons with advanced life-limiting illness living at home have fluctuating and complex needs. Community paediatric palliative care (PPC) is still predominantly specialist-led. This poses a potential care vacuum as medical conditions stabilise and specialised care ceases. One home-based PPC service introduced a step-down care program (COMET) as bridge to continuous yet adaptable support. Above overall effectiveness, how different outcomes are achieved is also investigated for context. Methods: We conducted a realist evaluation, using a mixed-methods case series design to study COMET operations and impact within the community care context (Context->Mechanism->Outcomes). Patient medical records and in-depth interviews with family caregivers and PPC professionals generated rich quantitative and qualitative data for analysis. Results: Of 121 patients under specialist PPC homecare, 18 (14.9%) were enrolled in COMET since November 2020; 12 of these formed individual case studies. Interviews with 15 caregivers and 7 PPC clinicians produced three crucial findings: (i) Ongoing access to specialist care is required for ever evolving complexities; (ii) Continuing support at home is vital for regular management and intermittent emergencies; (iii) COMET harmonizes shifting levels of support within a single unified framework, safeguarding existing rapport and care consistency. Conclusion: Until generalist PPC expertise becomes prevalent outside the hospital setting, novel care models like COMET could plug gaps in community PPC services by offering flexible care options. Continuity of care, efficient resource management, and superior service quality are inherent benefits, if meaningful care tiering through substantive patient assessments are refined further in future iterations.
{"title":"Integrating Step-down Care in Community-based Paediatric Palliative Services: A Realist Evaluation","authors":"Zhi Zheng Yeo, Poh Heng Chong","doi":"10.1101/2024.03.08.24303949","DOIUrl":"https://doi.org/10.1101/2024.03.08.24303949","url":null,"abstract":"Background: Young persons with advanced life-limiting illness living at home have fluctuating and complex needs. Community paediatric palliative care (PPC) is still predominantly specialist-led. This poses a potential care vacuum as medical conditions stabilise and specialised care ceases. One home-based PPC service introduced a step-down care program (COMET) as bridge to continuous yet adaptable support. Above overall effectiveness, how different outcomes are achieved is also investigated for context.\u0000Methods: We conducted a realist evaluation, using a mixed-methods case series design to study COMET operations and impact within the community care context (Context->Mechanism->Outcomes). Patient medical records and in-depth interviews with family caregivers and PPC professionals generated rich quantitative and qualitative data for analysis.\u0000Results: Of 121 patients under specialist PPC homecare, 18 (14.9%) were enrolled in COMET since November 2020; 12 of these formed individual case studies. Interviews with 15 caregivers and 7 PPC clinicians produced three crucial findings: (i) Ongoing access to specialist care is required for ever evolving complexities; (ii) Continuing support at home is vital for regular management and intermittent emergencies; (iii) COMET harmonizes shifting levels of support within a single unified framework, safeguarding existing rapport and care consistency.\u0000Conclusion: Until generalist PPC expertise becomes prevalent outside the hospital setting, novel care models like COMET could plug gaps in community PPC services by offering flexible care options. Continuity of care, efficient resource management, and superior service quality are inherent benefits, if meaningful care tiering through substantive patient assessments are refined further in future iterations.","PeriodicalId":501412,"journal":{"name":"medRxiv - Palliative Medicine","volume":"14 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140072969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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