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Cancer as a chronic illness: support needs and experiences
  1. Florien Boele1,
  2. Clare Harley2,
  3. Simon Pini3,
  4. Lucille Kenyon4,
  5. Amrit Daffu-O'Reilly2 and
  6. Galina Velikova4
  1. 1 Patient-Centred Outcomes Research Group (Leeds Institute of Medical Research at St James's) & Academic Unit of Health Economics (Leeds Institute of Health Sciences), University of Leeds, Leeds, UK
  2. 2 School of Healthcare, University of Leeds, Leeds, UK
  3. 3 Academic Unit of Palliative Care, University of Leeds, Leeds, UK
  4. 4 Patient-Centred Outcomes Research Group (Leeds Institute of Medical Research at St James's), University of Leeds, Leeds, UK
  1. Correspondence to Dr Florien Boele, Patient-Centred Outcomes Research (LIMR) & Academic Unit of Health Economics (LIHS), University of Leeds, Leeds LS9 7TF, UK; F.Boele{at}leeds.ac.uk

Abstract

Objectives Patients are living longer with active, advanced or metastatic disease that cannot be cured, but may be managed (ie, ‘chronic cancer’). The experiences and needs within this growing group are likely to be different from those shortly after diagnosis, on active curative treatment, or in the palliative or end-of-life phase, yet are poorly defined. We described chronic cancer patient experiences and support needs in a quantitative, multicentre cross-sectional study.

Methods Patients from five district general hospitals in England completed the 75-item Chronic Cancer Experiences Questionnaire (CCEQ). Responses were described and linear regression analysis was performed to explore the associations between poorer patient experiences and clinical/sociodemographic variables.

Results In total, 416 patients with prostate cancer (28%), breast cancer (24%), gynaecological cancer (19%), colorectal/gastrointestinal cancer (17%) and renal cancer (12%) completed the CCEQ (response rate 90%). Younger patients, those who had a longer interval between primary and advanced diagnosis and those not in a relationship, had worse experiences (R2=0.098, p<0.05). Cancer-specific symptoms were common, with 80% of participants experiencing fatigue. Areas related to poorest experiences include the coordination of care, general practitioner involvement, coping with limitations, and worries and anxieties.

Conclusions Psychological burden remains high in the chronic phase of cancer, and patients experience ongoing difficulties in accessing support and services. Younger patients who have been ill for longer and those who have less social support may be particularly vulnerable, and future studies are needed to investigate the best way to meet the unique needs of this growing patient population.

  • advanced cancer
  • chronic cancer
  • patient experiences
  • support needs
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Footnotes

  • Contributors CH and GV conceptualised and designed the study protocol. SP, AD-O and LK collected and managed the study data. FB, CH and GV designed the data analysis plan. FB cleaned the data, carried out analysis and drafted the paper. All authors contributed to review and editing of the paper, all have seen and approved the final version of the report.

  • Funding This work was supported by a grant from Dimbleby Cancer Care (477221). The first author was supported by a Yorkshire Cancer Research University Academic Fellowship (L389FB).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study was approved by the Leeds Central National Health Service (NHS) Ethics Research Committee (reference: 10/H1313/28).

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

  • Data availability statement No data are available.

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