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Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers
  1. Miriam J Johnson1,
  2. Chao Huang2,
  3. Hong Chen2,
  4. Lesley Jones1 and
  5. Maureen Twiddy2
  1. 1Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
  2. 2Institute of Clinical and Applied Health Research, Hull York Medical School, University of Hull, Hull, UK
  1. Correspondence to Professor Miriam J Johnson, Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK; miriam.johnson{at}hyms.ac.uk

Abstract

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.

  • supportive care
  • prostate

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Footnotes

  • Twitter @MJJohnson_HYMS

  • Contributors Concept and design MJJ and MT; conduct MJJ and MT; analysis CH, HC and LJ; first draft of manuscript MJJ; critical review of manuscript and approval of final version all authors; guarantor MJJ.

  • Funding This work was funded by Prostate Cancer UK and data collected as part of a commissioned study to inform an online clinician education resource housed by Prostate Cancer UK.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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