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    NA Presentation NA Presentation Presentation Transcript

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