Olinda Santin1, Liam Murray2, Gillian Prue3, Anna Gavin4, Gerard Gormley5, Michael Donnelly6. 1. School of Nursing and Midwifery Queens University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast BT9 7BL, UK. Electronic address: o.santin@qub.ac.uk. 2. Centre for Public Health, School of Medicine and Dentistry and Biomedical Science, Queen's University Belfast, Institute of Clinical Sciences, Block B, Royal Victoria Hospital, Belfast BT12 6BA, UK. Electronic address: l.murray@qub.ac.u. 3. School of Nursing and Midwifery Queens University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast BT9 7BL, UK. Electronic address: g.prue@qub.ac.uk. 4. N. Ireland Cancer Registry, Centre for Public Health, School of Medicine, Dentistry & Biomedical Sciences, Queen's University Belfast, Mulhouse Building, Grosvenor Road, Belfast, BT12 6DP, UK. Electronic address: a.gavin@qub.ac.uk. 5. Centre for Medical Education, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast, UK. Electronic address: g.gormley@qub.ac.uk. 6. Centre for Public Health, School of Medicine and Dentistry and Biomedical Science, Queen's University Belfast, Institute of Clinical Sciences, Block B, Royal Victoria Hospital, Belfast BT12 6BA, UK. Electronic address: michael.donnelly@qub.ac.uk.
Abstract
PURPOSE OF THE RESEARCH: To investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL). METHODS AND SAMPLE: Using the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors. KEY RESULTS: Approximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence. CONCLUSIONS: Overall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.
PURPOSE OF THE RESEARCH: To investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL). METHODS AND SAMPLE: Using the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors. KEY RESULTS: Approximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence. CONCLUSIONS: Overall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.
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