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 1. To elicit cancer care professionals views and perceptions about the needs of cancer survivors 2. To assess the self-reported needs for care of cancer survivors

Methodology 1. Qualitative study: semi-structured interviews (n=21) with purposive sample (Lead Clinicians, Lead Nurses, AHPs & major charities); thematic analysis 2. 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 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.