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NA Presentation

  1. 1. Needs assessment of cancer survivors O Santin, L Murray, A Gavin and M Donnelly Cancer health services research and survivorship studies programme Centre for Public Health, Queens University Belfast
  2. 2. Background <ul><li>Population of cancer survivors is increasing </li></ul><ul><li>Approx 32,000 people living with cancer in NI (2005) and 120,000 in RoI (2002) </li></ul><ul><li>Limited knowledge about their health and social care needs </li></ul><ul><li>Need for systematic, rigorous health care needs assessment </li></ul>
  3. 3. Main aims <ul><li>To elicit cancer care professionals views and perceptions about the needs of cancer survivors </li></ul><ul><li>To assess the self-reported needs for care of cancer survivors </li></ul>
  4. 4. Methodology <ul><li>Qualitative study : semi-structured interviews (n=21) with purposive sample (Lead Clinicians, Lead Nurses, AHPs & major charities); thematic analysis </li></ul><ul><li>Quantitative study : a postal survey (via GPs) using standardised measures of NA and QoL with a random sample (from NICR) of 600 colorectal cancer survivors; quantitative analysis </li></ul>
  5. 5. 1. Qualitative study – key results What is a cancer survivor? <ul><li>Various definitions </li></ul><ul><li>… time (eg 5-years post-diagnosis) </li></ul><ul><li>… cancer-specific trajectory and time-point </li></ul><ul><li>… treatment completion </li></ul><ul><li>… personal psychology (eg ‘state of mind’) </li></ul><ul><li>… anyone affected by cancer </li></ul><ul><li>… hinders understanding of needs </li></ul>
  6. 6. What are the needs of survivors? <ul><li>Physical Needs </li></ul><ul><li>Fatigue </li></ul><ul><li>Functioning </li></ul><ul><li>Subsidiary conditions </li></ul><ul><li>Psychological Needs </li></ul><ul><li>Fear of recurrence </li></ul><ul><li>Body image, sexuality </li></ul><ul><li>Depression, anxiety </li></ul>Social Needs Finance Employment … needs of survivors are multidimensional
  7. 7. Factors affecting need <ul><li>Male </li></ul><ul><li>Elderly </li></ul><ul><li>Cancer type (eg breast cancer vs. lung cancer) </li></ul><ul><li>Low pop density (eg living outside Belfast particularly in rural areas) </li></ul><ul><li>… survivors with one or more particular characteristics may require additional dedicated service attention. </li></ul>
  8. 8. What services are available? <ul><li>A follow-up, hospital-based, test-focused and clinician-led review of each pt </li></ul><ul><li>Variation in follow-up reviews due to ‘practitioner style’ and contextual factors </li></ul><ul><li>Ineffective re: detecting c. recurrence? </li></ul><ul><li>Test-focused; insufficient attention given to psychosocial issues </li></ul><ul><li>Anxiety-provoking </li></ul><ul><li>… need to review post-discharge services for cancer survivors </li></ul>
  9. 9. What services are available? <ul><li>Primary care </li></ul><ul><li>Main service outside hospital for survivors </li></ul><ul><li>No specialist primary care service for survivors </li></ul><ul><li>Only see survivors who ‘present’ to GP </li></ul><ul><li>Survivors require ongoing reassurance from GP </li></ul><ul><li>GPs unaware of services for survivors </li></ul><ul><li>Voluntary sector provision </li></ul><ul><li>Information, support groups, counselling, alternative therapies, etc </li></ul><ul><li>Service users mainly women </li></ul><ul><li>Concerns re: support group ‘dependency’ </li></ul><ul><li>… the role of primary and community care for survivors is not well understood </li></ul>
  10. 10. 2. Quantitative study – key results <ul><li>‘ Top 10’ needs (% unmet) </li></ul><ul><li>Access to GP - 74% (12%) </li></ul><ul><li>Coordinated care - 60% (15%) </li></ul><ul><li>Medical team management – 56% (11%) </li></ul><ul><li>Local health services – 55% ( 16%) </li></ul><ul><li>Recurrence anxiety – 51% (20%) </li></ul><ul><li>Other illnesses – 48% (9%) </li></ul><ul><li>Contact after treatment - 44% (9%) </li></ul><ul><li>Complaints - 40% (11%) </li></ul><ul><li>Easily understood information - 40% (14%) </li></ul><ul><li>Fatigue management – 30% (12%) </li></ul>
  11. 11. Unmet need – early key results <ul><li>Unmet need not associated with gender, marital status, geographical location, deprivation level, cancer site, time since diagnosis or cancer stage </li></ul><ul><li>Older survivors sig less likely to report unmet needs ( greatest among 50-59 age group -54% with unmet needs) </li></ul><ul><li>Observed across the 4 domains of CaSUN measure of need </li></ul>
  12. 12. Quality of life – early key results <ul><li>QoL not associated with gender, marital status, geographical location, deprivation level, cancer site or cancer stage </li></ul><ul><li>Older survivors sig better QoL than younger survivors; QoL improved over time from the point of diagnosis </li></ul><ul><li>Observed for total QoL scores only </li></ul><ul><li>Strong positive r/ship between unmet need and QoL </li></ul>
  13. 13. Key conclusions <ul><li>Various definitions of a cancer survivor </li></ul><ul><li>Cancer survivors have specific needs covering psychological, social and physical domains </li></ul><ul><li>Gender, age, cancer site & location of home affect needs for care (professional perspective) </li></ul><ul><li>Age (and time since diagnosis) main driver(s) of needs and QoL (colorectal survivor perspective) </li></ul><ul><li>Need to give particular attention to younger rather than older survivors? </li></ul><ul><li>Follow-up reviews not meeting the needs of cancer survivors </li></ul>
  14. 14. Key conclusions <ul><li>Primary and community care including voluntary </li></ul><ul><li>sector provision requires review </li></ul><ul><li>Need for better co-ordinated care (according to patient perspective) </li></ul><ul><li>Relatively high unmet psychosocial needs particularly anxiety (recurrence) and fatigue </li></ul><ul><li>Role for Self-Management Programmes for survivors ? </li></ul><ul><li>Addressing unmet needs likely to improve QoL </li></ul><ul><li>Finally, majority of colorectal survivors appear to cope extremely well despite these difficulties </li></ul>
  15. 15. A cancer survivor is someone living with and beyond cancer … <ul><li>… who has completed initial cancer management and has no apparent evidence of active disease, or </li></ul><ul><li>… .is living with progressive disease and may be receiving cancer treatment but is not in the terminal phase of the illness (last six months of life) </li></ul><ul><li>or </li></ul><ul><li>… has had cancer in the past </li></ul><ul><li>Macmillan Cancer (2008) Two Million Reasons – The Cancer Survivorship Agenda. </li></ul>