Pub Date : 2021-09-03DOI: 10.1080/09699260.2021.1967693
T. Mattsson, Anton Pottegård
{"title":"Bibliography","authors":"T. Mattsson, Anton Pottegård","doi":"10.1080/09699260.2021.1967693","DOIUrl":"https://doi.org/10.1080/09699260.2021.1967693","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45947757","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 : 2021-08-27DOI: 10.1080/09699260.2021.1965776
Alicia Callisto, L. Leong, G. Crawford
Background: In Australia, an aging population has intensified demand on residential aged care facilities, hospitals and palliative care services for end-of-life care. The likelihood of home death for cancer patients in South Australia has remained below 14%. Objectives: This research aims to investigate predictors for community death and preferred place of death of patients registered with an Australian community adult specialist palliative care service (SPCS). Methods: A consecutive cohort retrospective medical records and electronic database review of all referred patients who died between 1st January and 30th June 2017 was undertaken. Results: There were 456 registered patients who died in this period. The 62 rural patients and 32 patients with missing medical records were excluded. Of the remaining 362 patients, 62 did not have community face-to-face contact and were excluded. Of the 300 patients eligible, there were 143 females and mean age was 71 years. This study revealed an overall community death rate (private home and residential aged care facility) of 31.3% compared with private home death rate of 17%. There were two important predictors of community death. Firstly, family/caregiver preferred place of death had a far greater impact on likelihood of community death than patient preferred place of death. Secondly, the intensity of input from the whole palliative care team, in particular, community face-to-face visits and more specifically by nurses, were major predictors. Conclusion: Investing in community-based SPCSs may not only better support patient and family/caregiver preferences, and increase rates of community death but also reduces hospitalisation costs.
{"title":"Predictors of community death in an Australian specialist palliative care service","authors":"Alicia Callisto, L. Leong, G. Crawford","doi":"10.1080/09699260.2021.1965776","DOIUrl":"https://doi.org/10.1080/09699260.2021.1965776","url":null,"abstract":"Background: In Australia, an aging population has intensified demand on residential aged care facilities, hospitals and palliative care services for end-of-life care. The likelihood of home death for cancer patients in South Australia has remained below 14%. Objectives: This research aims to investigate predictors for community death and preferred place of death of patients registered with an Australian community adult specialist palliative care service (SPCS). Methods: A consecutive cohort retrospective medical records and electronic database review of all referred patients who died between 1st January and 30th June 2017 was undertaken. Results: There were 456 registered patients who died in this period. The 62 rural patients and 32 patients with missing medical records were excluded. Of the remaining 362 patients, 62 did not have community face-to-face contact and were excluded. Of the 300 patients eligible, there were 143 females and mean age was 71 years. This study revealed an overall community death rate (private home and residential aged care facility) of 31.3% compared with private home death rate of 17%. There were two important predictors of community death. Firstly, family/caregiver preferred place of death had a far greater impact on likelihood of community death than patient preferred place of death. Secondly, the intensity of input from the whole palliative care team, in particular, community face-to-face visits and more specifically by nurses, were major predictors. Conclusion: Investing in community-based SPCSs may not only better support patient and family/caregiver preferences, and increase rates of community death but also reduces hospitalisation costs.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44411405","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 : 2021-08-22DOI: 10.1080/09699260.2021.1964678
S. Vanderstichelen, L. Pelttari, R. Scott
The European Association for Palliative Care (EAPC) Madrid Charter on volunteering in hospice and palliative care (HPC) was launched in 2017 to advocate for the support, recognition, promotion and development of volunteering in HPC. However, charters are rarely evaluated, and impact often assumed a priori. To evaluate whether such declarations influence change, we must understand their reach and use. We aimed to assess the awareness, reach and impact of the EAPC Madrid Charter on HPC Volunteering in Europe and evaluate its potential as an advocacy tool in HPC. An online survey questionnaire including open and closed questions, was sent to a convenience sample of all 55 EAPC member organizations, other regional and national European HPC and HPC volunteering organizations. Forty-six responses were received from 11 countries. The Charter mainly spread through word of mouth (72%). Sixty-four per cent of respondents had heard of the Charter; of these 80% had signed it but only 30% had used it. Directors used the Charter in policy documents (70%). Volunteer coordinators had used it in various ways (57%). Most general coordinators (83%) found no use for the Charter. Feedback from participants indicated a lack of practical applications. The Charter was considered useful for policy negotiation but lacking practical applications to support HPC volunteering in the short term. Charters may be tools for long-term change, rather than immediate change in practice. A multipronged approach may be required where Charters are complemented by practical instruments.
{"title":"Evaluating the EAPC Madrid Charter on volunteering in hospice and palliative care: Reflections on impact","authors":"S. Vanderstichelen, L. Pelttari, R. Scott","doi":"10.1080/09699260.2021.1964678","DOIUrl":"https://doi.org/10.1080/09699260.2021.1964678","url":null,"abstract":"The European Association for Palliative Care (EAPC) Madrid Charter on volunteering in hospice and palliative care (HPC) was launched in 2017 to advocate for the support, recognition, promotion and development of volunteering in HPC. However, charters are rarely evaluated, and impact often assumed a priori. To evaluate whether such declarations influence change, we must understand their reach and use. We aimed to assess the awareness, reach and impact of the EAPC Madrid Charter on HPC Volunteering in Europe and evaluate its potential as an advocacy tool in HPC. An online survey questionnaire including open and closed questions, was sent to a convenience sample of all 55 EAPC member organizations, other regional and national European HPC and HPC volunteering organizations. Forty-six responses were received from 11 countries. The Charter mainly spread through word of mouth (72%). Sixty-four per cent of respondents had heard of the Charter; of these 80% had signed it but only 30% had used it. Directors used the Charter in policy documents (70%). Volunteer coordinators had used it in various ways (57%). Most general coordinators (83%) found no use for the Charter. Feedback from participants indicated a lack of practical applications. The Charter was considered useful for policy negotiation but lacking practical applications to support HPC volunteering in the short term. Charters may be tools for long-term change, rather than immediate change in practice. A multipronged approach may be required where Charters are complemented by practical instruments.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41783688","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 : 2021-08-17DOI: 10.1080/09699260.2021.1963175
Yen Ching Siow, M. Cheong, Kai Siang Lim, Santelaksmii Mahalinggam, Cindy Cy Oun Teoh
Background Governments have an obligation to provide palliative care as a part of achieving Universal Health Coverage. This obligation to provide palliative care has grown significantly due to the immense suffering caused by the COVID-19 pandemic to patients and their carers. The successful delivery of palliative care, however, requires a healthcare workforce that is trained to provide palliative care at all levels. It is especially important to be able to train healthcare workers in basic-level palliative care to expand the health system’s capacity to provide palliative care. Objectives The aim of this study is to evaluate the effectiveness of this training programme on the participants’ interest and knowledge in palliative care, and their preparedness to deliver basic-level palliative care. Methods We developed a novel training programme for basic palliative care using didactic and participatory learning methods, along with a mentoring system. The programme was delivered over 6 months. 38 physicians were trained. A survey to evaluate the participants’ interest and knowledge of palliative care, as well as their preparedness to provide palliative care was conducted at 3 timepoints – pre-training, post-training, and 3 months post-training. Results Improvements in the interest (4.05 vs 4.24, p<0.05) and knowledge of palliative care (83.05 vs 93.10, p<0.001), and the preparedness to provide various aspects of palliative care were observed post-training. These improvements were sustained after 3 months post-training. Conclusions A training programme using didactic and participatory learning methods, along with a mentor-mentee system can be effective in training physicians to provide basic-level palliative care.
作为实现全民健康覆盖的一部分，各国政府有义务提供姑息治疗。由于COVID-19大流行给患者及其护理人员造成巨大痛苦，提供姑息治疗的义务大大增加。然而，要成功地提供姑息治疗，就需要一支受过培训、能够在各级提供姑息治疗的医疗保健队伍。尤其重要的是，能够对卫生保健工作者进行基层姑息治疗方面的培训，以扩大卫生系统提供姑息治疗的能力。本研究的目的是评估该培训计划对参与者对姑息治疗的兴趣和知识的有效性，以及他们提供基本水平姑息治疗的准备。方法:我们开发了一种新的基本姑息治疗培训计划，使用说教式和参与式学习方法，以及指导系统。该项目历时6个月。培训了38名医生。在三个时间点(训练前、训练后和训练后3个月)进行了一项调查，以评估参与者对姑息治疗的兴趣和知识，以及他们提供姑息治疗的准备情况。结果培训后患者对姑息治疗的兴趣(4.05 vs 4.24, p<0.05)和知识(83.05 vs 93.10, p<0.001)以及提供姑息治疗各方面的准备均有改善。这些改善在训练后3个月后持续。结论:采用说教式和参与式学习方法的培训计划，以及导师-被指导者系统，可以有效地培训医生提供基础水平的姑息治疗。
{"title":"Training physicians to provide basic-level palliative care: an evaluation of a novel training programme","authors":"Yen Ching Siow, M. Cheong, Kai Siang Lim, Santelaksmii Mahalinggam, Cindy Cy Oun Teoh","doi":"10.1080/09699260.2021.1963175","DOIUrl":"https://doi.org/10.1080/09699260.2021.1963175","url":null,"abstract":"Background Governments have an obligation to provide palliative care as a part of achieving Universal Health Coverage. This obligation to provide palliative care has grown significantly due to the immense suffering caused by the COVID-19 pandemic to patients and their carers. The successful delivery of palliative care, however, requires a healthcare workforce that is trained to provide palliative care at all levels. It is especially important to be able to train healthcare workers in basic-level palliative care to expand the health system’s capacity to provide palliative care. Objectives The aim of this study is to evaluate the effectiveness of this training programme on the participants’ interest and knowledge in palliative care, and their preparedness to deliver basic-level palliative care. Methods We developed a novel training programme for basic palliative care using didactic and participatory learning methods, along with a mentoring system. The programme was delivered over 6 months. 38 physicians were trained. A survey to evaluate the participants’ interest and knowledge of palliative care, as well as their preparedness to provide palliative care was conducted at 3 timepoints – pre-training, post-training, and 3 months post-training. Results Improvements in the interest (4.05 vs 4.24, p<0.05) and knowledge of palliative care (83.05 vs 93.10, p<0.001), and the preparedness to provide various aspects of palliative care were observed post-training. These improvements were sustained after 3 months post-training. Conclusions A training programme using didactic and participatory learning methods, along with a mentor-mentee system can be effective in training physicians to provide basic-level palliative care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43217302","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 : 2021-08-17DOI: 10.1080/09699260.2021.1962669
Amanda Roberts
This article charts the learning from an online, artmaking programme supporting individuals with a life-limiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants’ comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.
{"title":"From artmaking to changemaking: Conceptualizing the PATCH (Palliative care patient-led change) programme","authors":"Amanda Roberts","doi":"10.1080/09699260.2021.1962669","DOIUrl":"https://doi.org/10.1080/09699260.2021.1962669","url":null,"abstract":"This article charts the learning from an online, artmaking programme supporting individuals with a life-limiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants’ comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45888694","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 : 2021-07-04DOI: 10.1080/09699260.2021.1945813
{"title":"Bibliography","authors":"","doi":"10.1080/09699260.2021.1945813","DOIUrl":"https://doi.org/10.1080/09699260.2021.1945813","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1945813","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46022596","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 : 2021-07-04DOI: 10.1080/09699260.2021.1952415
Jason Mills
An editorial is presented on the theoretical foundations for self-care practice. Topics include the effective self-care practice may not be so common for healthcare professionals, the primary focus of self-care discourse has largely been concerned with collective practicalities in the clinical practice milieu, and the realms of theory and theory development for self-care among healthcare professionals are relatively underdeveloped.
{"title":"Theoretical foundations for self-care practice","authors":"Jason Mills","doi":"10.1080/09699260.2021.1952415","DOIUrl":"https://doi.org/10.1080/09699260.2021.1952415","url":null,"abstract":"An editorial is presented on the theoretical foundations for self-care practice. Topics include the effective self-care practice may not be so common for healthcare professionals, the primary focus of self-care discourse has largely been concerned with collective practicalities in the clinical practice milieu, and the realms of theory and theory development for self-care among healthcare professionals are relatively underdeveloped.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1952415","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47924459","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 : 2021-05-21DOI: 10.1080/09699260.2021.1922146
Mahrley T. Provido-Aljibe, Choon Meng Yee, Zhi Jun Carin Low, A. Hum
Context Ketamine at sub-anesthetic doses is a potent analgesia. Its use in cancer pain remains equivocal with protocols varying in patient selection, starting dose, titration, duration of use and adjustment of co-analgesics. Objective To study the impact of a standardised Ketamine Step Protocol on cancer pain in a Palliative Care Unit (PCU). Methodology This is a prospective cohort study of a standardised Ketamine Step Protocol which was developed in a PCU for use in cancer pain. The subcutaneous ketamine infusion was standardised at a starting dose of 75 mg over 24 hours with Haloperidol 5 mg as prophylaxis against psycho-mimetic side effects. Incremental doses of ketamine followed the daily stepwise protocol. Result Of the 48 patients analysed, 41 (85.4%) had neuropathic cancer pain. The median Palliative Performance Scale score (PPSv2) was 40%. Mean Numerical Rating Score (NRS) improved from 6.74 to 2.61 (P < 0.0001) with a mean percentage reduction of 58.05%. The final mean daily ketamine dose needed to achieve stable pain control was 137.50 mg/day (±81.54). 31(62.5%) patients achieved pain control by day 3. The mean Morphine Equivalent Daily Dose (MEDD) reduction was from 130.34 mg to 107.33 mg (P < 0.002) with a percentage reduction of 18.85%. More than half of our patients completed the 5 d protocol with mild to moderate side effects not warranting urgent medical intervention nor termination of the ketamine protocol. Conclusion Use of a standardised Ketamine Step Protocol showed a statistically significant reduction in pain and MEDD in patients with predominantly neuropathic cancer pain. It also demonstrated a safe and effective method for opioid reduction after commencement of parenteral ketamine. Key Message How can a standardised ketamine protocol impact on cancer pain control? Our study shows that: Parenteral ketamine is a potent analgesic which significantly reduced pain in patients with cancer neuropathic pain. This study also demonstrated a safe and effective method for titration of opioids after parenteral ketamine is started. Concurrent use of psychotropics also helps to reduce psycho-mimetic side effects, increasing tolerability to ketamine.
{"title":"The impact of a standardised ketamine step protocol for cancer neuropathic pain","authors":"Mahrley T. Provido-Aljibe, Choon Meng Yee, Zhi Jun Carin Low, A. Hum","doi":"10.1080/09699260.2021.1922146","DOIUrl":"https://doi.org/10.1080/09699260.2021.1922146","url":null,"abstract":"Context Ketamine at sub-anesthetic doses is a potent analgesia. Its use in cancer pain remains equivocal with protocols varying in patient selection, starting dose, titration, duration of use and adjustment of co-analgesics. Objective To study the impact of a standardised Ketamine Step Protocol on cancer pain in a Palliative Care Unit (PCU). Methodology This is a prospective cohort study of a standardised Ketamine Step Protocol which was developed in a PCU for use in cancer pain. The subcutaneous ketamine infusion was standardised at a starting dose of 75 mg over 24 hours with Haloperidol 5 mg as prophylaxis against psycho-mimetic side effects. Incremental doses of ketamine followed the daily stepwise protocol. Result Of the 48 patients analysed, 41 (85.4%) had neuropathic cancer pain. The median Palliative Performance Scale score (PPSv2) was 40%. Mean Numerical Rating Score (NRS) improved from 6.74 to 2.61 (P < 0.0001) with a mean percentage reduction of 58.05%. The final mean daily ketamine dose needed to achieve stable pain control was 137.50 mg/day (±81.54). 31(62.5%) patients achieved pain control by day 3. The mean Morphine Equivalent Daily Dose (MEDD) reduction was from 130.34 mg to 107.33 mg (P < 0.002) with a percentage reduction of 18.85%. More than half of our patients completed the 5 d protocol with mild to moderate side effects not warranting urgent medical intervention nor termination of the ketamine protocol. Conclusion Use of a standardised Ketamine Step Protocol showed a statistically significant reduction in pain and MEDD in patients with predominantly neuropathic cancer pain. It also demonstrated a safe and effective method for opioid reduction after commencement of parenteral ketamine. Key Message How can a standardised ketamine protocol impact on cancer pain control? Our study shows that: Parenteral ketamine is a potent analgesic which significantly reduced pain in patients with cancer neuropathic pain. This study also demonstrated a safe and effective method for titration of opioids after parenteral ketamine is started. Concurrent use of psychotropics also helps to reduce psycho-mimetic side effects, increasing tolerability to ketamine.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1922146","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43186093","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 : 2021-05-21DOI: 10.1080/09699260.2021.1922795
L. Willmott, B. White, Rachel Feeney, K. Chambaere, P. Yates, G. Mitchell, D. Piper
Little is known in Australia about current practice relating to medical end-of-life decisions preceding patient deaths. This study aimed to translate and culturally adapt a European questionnaire on medical end-of-life decisions and end-of-life care to the Australian context, producing a questionnaire to assess current medical practice in Australia and enable comparison with international studies. Following initial research team review, an English translation of the questionnaire was culturally adapted using four waves of cognitive pre-testing interviews with members of the target community: Australian doctors (n=27) from different specialties, clinical settings and geographical locations. Cognitive interviewing was used to identify potential problems with the translated questionnaire by examining the cognitive processes participants used to answer questions. Two experts in end-of-life research provided feedback on the questionnaire after the third wave of cognitive interviews. Research team review occurred again after the third and fourth waves of cognitive interviews. Interview notes were reviewed, coded and analysed using content analysis. A consensus approach was used to identify necessary adaptations, with all members of the research team endorsing the adaptations. Following cognitive pre-testing, an online version of the questionnaire was piloted with doctors, nurses and health law researchers (n=13). Improvements to questionnaire wording, flow/routeing and design were identified during the cognitive interviewing and piloting process and implemented. Saturation in terms of face and content validity and acceptability of the questionnaire was achieved after four rounds of cognitive interviews. Participants generally agreed that the adapted questionnaire instructions were easy to follow, the questions were easy to understand, they felt comfortable answering all the questions, and the online questionnaire format was user friendly. The time taken to complete the questionnaire (average 9.2 min) was also acceptable to participants. Cognitive interviewing was a suitable method for identifying and solving challenges with comprehension and applicability of the questionnaire within the Australian context. The final questionnaire was well accepted by doctors and is now being used in a study exploring the incidence and nature of medical end-of-life decisions involving adult patients in one Australian state (Victoria). This questionnaire may be suitable for use or further adaptation in research in other English speaking jurisdictions.
{"title":"Collecting data on end-of-life decision-making: Questionnaire translation, adaptation and validity assessment","authors":"L. Willmott, B. White, Rachel Feeney, K. Chambaere, P. Yates, G. Mitchell, D. Piper","doi":"10.1080/09699260.2021.1922795","DOIUrl":"https://doi.org/10.1080/09699260.2021.1922795","url":null,"abstract":"Little is known in Australia about current practice relating to medical end-of-life decisions preceding patient deaths. This study aimed to translate and culturally adapt a European questionnaire on medical end-of-life decisions and end-of-life care to the Australian context, producing a questionnaire to assess current medical practice in Australia and enable comparison with international studies. Following initial research team review, an English translation of the questionnaire was culturally adapted using four waves of cognitive pre-testing interviews with members of the target community: Australian doctors (n=27) from different specialties, clinical settings and geographical locations. Cognitive interviewing was used to identify potential problems with the translated questionnaire by examining the cognitive processes participants used to answer questions. Two experts in end-of-life research provided feedback on the questionnaire after the third wave of cognitive interviews. Research team review occurred again after the third and fourth waves of cognitive interviews. Interview notes were reviewed, coded and analysed using content analysis. A consensus approach was used to identify necessary adaptations, with all members of the research team endorsing the adaptations. Following cognitive pre-testing, an online version of the questionnaire was piloted with doctors, nurses and health law researchers (n=13). Improvements to questionnaire wording, flow/routeing and design were identified during the cognitive interviewing and piloting process and implemented. Saturation in terms of face and content validity and acceptability of the questionnaire was achieved after four rounds of cognitive interviews. Participants generally agreed that the adapted questionnaire instructions were easy to follow, the questions were easy to understand, they felt comfortable answering all the questions, and the online questionnaire format was user friendly. The time taken to complete the questionnaire (average 9.2 min) was also acceptable to participants. Cognitive interviewing was a suitable method for identifying and solving challenges with comprehension and applicability of the questionnaire within the Australian context. The final questionnaire was well accepted by doctors and is now being used in a study exploring the incidence and nature of medical end-of-life decisions involving adult patients in one Australian state (Victoria). This questionnaire may be suitable for use or further adaptation in research in other English speaking jurisdictions.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2021-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1922795","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44845646","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 : 2021-05-08DOI: 10.1080/09699260.2021.1919046
Hayato Takayama, K. Kawahara, K. Fushimi
The number of elderly people aged 65 and over is increasing in Japan. Elderly, terminal patients in acute care hospitals receive aggressive therapy treatments, leading to higher national medical costs; however, reports indicate that patient discussions regarding end-of-life medical care can reduce unnecessary aggressive therapies. This study investigated whether the presence of home-based medical care impacted the use of aggressive therapies in terminal, elderly patients who had died of pneumonia during hospitalization. Japanese Diagnosis Procedure Combination (DPC) patient data were obtained for the period April 2014 to March 2017. We conducted a multicenter, cohort study of inpatients aged 65 years or older who were hospitalized for pneumonia and subsequently died. We analyzed the relationship between pre-hospitalization, home-based medical care, and aggressive therapies during the terminal stages of pneumonia using the chi-square test, t-tests, and logistic regression analyses. Data extracted included 13,582 cases of patients with pneumonia over the age of 65 years. The mean patient age was 83.1 (±7.02) years, 64.7% were male, 47.8% underwent ambulance transport, and 17.2% had home-based medical care. Aggressive therapy was administered in 33.3% of the cases. Effects of the independent variables on incidence of aggressive therapy were observed in 2,332 cases (17.2%; OR: 0.879; 95% CI: 0.791-0.977). Odds ratios were higher for patients undergoing ambulance transport, a higher Barthel index, and a higher A-DROP. We found that incidences of aggressive therapy during terminal stages of pneumonia were significantly lower for elderly patients who received home-based medical care prior to hospitalization.
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