scholarly journals Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers

2021 ◽  
pp. bmjspcare-2021-003438
Author(s):  
Miriam J Johnson ◽  
Chao Huang ◽  
Hong Chen ◽  
Lesley Jones ◽  
Maureen Twiddy
Keyword(s):  
Prostate Cancer ◽  
Palliative Care ◽  
Health Status ◽  
Needs Assessment ◽  
Unmet Needs ◽  
Advanced Disease ◽  
Free Text ◽  
Family Carers ◽  
Care Needs ◽  
Text Data

ObjectivesMen 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.MethodsMixed-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.Results216 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.ConclusionsMany 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.

Timely recognition of palliative care needs of patients with advanced chronic heart failure: a pilot study of a Dutch translation of the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF)

2019 ◽  
Vol 18 (5) ◽  
pp. 375-388 ◽  
Author(s):  
Daisy JA Janssen ◽  
Josiane Boyne ◽  
David C Currow ◽  
Jos MGA Schols ◽  
Miriam J Johnson ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Health Status ◽  
Chronic Heart Failure ◽  
Needs Assessment ◽  
Caregiver Burden ◽  
Assessment Tool ◽  
Care Needs ◽  
Care Dependency ◽  
Palliative Care Needs

Background: The Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) was developed to identify and triage palliative care needs in patients with chronic heart failure. A Dutch version is currently lacking. Aims: The aim of this study was to investigate the feasibility and acceptability of a Dutch NAT:PD-HF in chronic heart failure outpatients; and to gain preliminary data regarding the effect of the NAT:PD-HF on palliative care referral, symptoms, health status, care dependency, caregiver burden and advance directives. Methods: A mixed methods study including 23 outpatients with advanced chronic heart failure and 20 family caregivers was performed. Nurses conducted patient consultations using a Dutch translation of the NAT:PD-HF and rated acceptability. Before this visit and 4 months later, symptoms, health status, performance status, care dependency, caregiver burden and recorded advance directives were assessed. A focus group with participating nurses discussed barriers and facilitators towards palliative care needs assessment. Results: Acceptability was rated as 7 (interquartile range 6–7 points) on a 10-point scale. All patients had palliative care needs. In 48% actions were taken, including two patients referred to palliative care. Symptoms, performance status, care dependency, caregiver burden and advance directives were unchanged at 4 months, while health status deteriorated in patients completing follow-up ( n=17). Barriers towards palliative care needs assessment included feeling uncomfortable to initiate discussions and concerns about the ability to address palliative care needs. Conclusions: The NAT:PD-HF identified palliative care needs in all participants, and triggered action to address these in half. However, training in palliative care communication skills as well as palliative care interventions should accompany the introduction of a palliative care needs assessment tool. Netherlands National Trial Register (NTR): 5616. http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5616

scholarly journals Identifying Palliative Care Needs in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez
Keyword(s):  
Palliative Care ◽  
Assisted Living ◽  
Unmet Needs ◽  
Care Needs ◽  
Code Status ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
Palliative Care Needs

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.

scholarly journals Symptoms, unmet needs, psychological well-being and health status in survivors of prostate cancer: implications for redesigning follow-up

2015 ◽  
Vol 117 (6B) ◽  
pp. E10-E19 ◽  
Author(s):  
Eila Watson ◽  
Bethany Shinkins ◽  
Emma Frith ◽  
David Neal ◽  
Freddie Hamdy ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Health Status ◽  
Unmet Needs ◽  
Well Being ◽  
Psychological Well Being

A Palliative Care Needs Assessment of Rural Hospitals

2013 ◽  
Vol 16 (6) ◽  
pp. 638-644 ◽  
Author(s):  
Regina M. Fink ◽  
Kathleen S. Oman ◽  
Jeanie Youngwerth ◽  
Lucinda L. Bryant
Keyword(s):  
Palliative Care ◽  
Needs Assessment ◽  
Rural Hospitals ◽  
Care Needs ◽  
Palliative Care Needs

Age, Health, and Education Determine Supportive Care Needs of Men Younger Than 70 Years With Prostate Cancer

2007 ◽  
Vol 25 (18) ◽  
pp. 2560-2566 ◽  
Author(s):  
David P. Smith ◽  
Rajah Supramaniam ◽  
Madeleine T. King ◽  
Jeanette Ward ◽  
Martin Berry ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Supportive Care ◽  
Unmet Needs ◽  
Specific Antigen ◽  
Unmet Need ◽  
Psychological Needs ◽  
Supportive Care Needs ◽  
Newly Diagnosed ◽  
Treatment Needs ◽  
Care Needs

Purpose It is important to meet the supportive care needs of cancer patients to ensure their satisfaction with their care. A population-wide sample of men younger than 70 years and newly diagnosed with prostate cancer was surveyed to determine their unmet needs in five domains and the factors predicting them. Patients and Methods Eligible men were younger than 70 years and residents in New South Wales, Australia, with newly diagnosed histopathologically confirmed prostate cancer. Sixty-seven percent of eligible men diagnosed between October 2000 and October 2001 participated. Demographic, treatment, and self-reported health data were collected. Information on cancer stage, grade, and prostate-specific antigen was obtained from medical records. Logistic regression analyses determined patient and treatment variables that predicted higher unmet needs. Results More than half (54%) of men with prostate cancer expressed some level of unmet psychological need, and 47% expressed unmet sexuality needs. Nearly one fourth expressed a moderate or high level of unmet need with respect to changes in sexuality. Sexuality needs were independently predicted by being younger, having had a secondary school education only, having had surgery, and being married, living as married, or divorced. Uncertainty about the future was also an important area of unmet need. Conclusion Attention should be given to sexual and psychological needs in the early months after diagnosis or treatment of prostate cancer, particularly in younger men, those with less education, and those having surgery. Research into better ways of meeting these needs will enable us to meet them with as much rigor as we meet clinical treatment needs.

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