{"title":"前列腺癌:未得到满足的支持性护理和姑息治疗需求:全国患者和家庭护理者调查。","authors":"Miriam J Johnson, Chao Huang, Hong Chen, Lesley Jones, Maureen Twiddy","doi":"10.1136/bmjspcare-2021-003438","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>Men living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.</p><p><strong>Methods: </strong>Mixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.</p><p><strong>Results: </strong>216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men's health status was worse with active vs remitted disease (mean difference -11; 95% CI -17 to -5; p<0.001). 85 (88%) carers reported at least one unmet need relating to 'enabling them to care' and 83 (86%) relating to 'their own well-being'. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.</p><p><strong>Conclusions: </strong>Many living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.0000,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers.\",\"authors\":\"Miriam J Johnson, Chao Huang, Hong Chen, Lesley Jones, Maureen Twiddy\",\"doi\":\"10.1136/bmjspcare-2021-003438\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>Men living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.</p><p><strong>Methods: </strong>Mixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.</p><p><strong>Results: </strong>216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men's health status was worse with active vs remitted disease (mean difference -11; 95% CI -17 to -5; p<0.001). 85 (88%) carers reported at least one unmet need relating to 'enabling them to care' and 83 (86%) relating to 'their own well-being'. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.</p><p><strong>Conclusions: </strong>Many living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.</p>\",\"PeriodicalId\":9136,\"journal\":{\"name\":\"BMJ Supportive & Palliative Care\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2024-08-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"BMJ Supportive & Palliative Care\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1136/bmjspcare-2021-003438\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMJ Supportive & Palliative Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1136/bmjspcare-2021-003438","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers.
Objectives: Men living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.
Methods: Mixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.
Results: 216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men's health status was worse with active vs remitted disease (mean difference -11; 95% CI -17 to -5; p<0.001). 85 (88%) carers reported at least one unmet need relating to 'enabling them to care' and 83 (86%) relating to 'their own well-being'. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.
Conclusions: Many living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.
期刊介绍:
Published quarterly in print and continuously online, BMJ Supportive & Palliative Care aims to connect many disciplines and specialties throughout the world by providing high quality, clinically relevant research, reviews, comment, information and news of international importance.
We hold an inclusive view of supportive and palliative care research and we are able to call on expertise to critique the whole range of methodologies within the subject, including those working in transitional research, clinical trials, epidemiology, behavioural sciences, ethics and health service research. Articles with relevance to clinical practice and clinical service development will be considered for publication.
In an international context, many different categories of clinician and healthcare workers do clinical work associated with palliative medicine, specialist or generalist palliative care, supportive care, psychosocial-oncology and end of life care. We wish to engage many specialties, not only those traditionally associated with supportive and palliative care. We hope to extend the readership to doctors, nurses, other healthcare workers and researchers in medical and surgical specialties, including but not limited to cardiology, gastroenterology, geriatrics, neurology, oncology, paediatrics, primary care, psychiatry, psychology, renal medicine, respiratory medicine.