Cancer as a chronic illness: support needs and experiences.

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.

Evaluating the experiences and support needs of people living with chronic cancer: development and initial validation of the Chronic Cancer Experiences Questionnaire (CCEQ).

BACKGROUND: Many advanced cancers are managed as chronic diseases, yet there are currently no international guidelines for the support of patients living with chronic cancer. It is important to understand whether care and service arrangements meet the needs of this rapidly growing patient group. This study aimed to develop and validate a questionnaire to capture patients' experiences of living with chronic cancer and their views of clinical and support services. METHODS: The research was carried out between 1 July 2010 and 21 February 2013. A conceptual framework and initial item bank were derived from prior interviews with 56 patients with chronic cancer. Items were reviewed by 4 oncologists and 1 clinical nurse specialist and during 2 focus groups with 9 patients. Pilot questionnaires were completed by 416 patients across 5 cancer units. Item selection and scale reliability was explored using descriptive data, exploratory factor analysis, internal consistency analyses, multitrait scaling analyses and known-groups comparisons. RESULTS: The final Chronic Cancer Experiences Questionnaire (CCEQ) includes 75 items. 62 items contribute to 14 subscales with internal consistency between α 0·68-0·88 and minimal scaling errors. Known-groups comparisons confirmed subscale utility in distinguishing between patient groups. Subscales were labelled: managing appointments, coordination of care, general practitioner involvement, clinical trials, information and questions, making treatment decisions, symptom non-reporting, key worker, limitations, sustaining normality, financial advice, worries and anxieties, sharing feelings with others, and accessing support. 13 items assessing symptom experiences were retained as single items. CONCLUSIONS: The CCEQ has the potential to be used as a clinical instrument to assess patient experiences of chronic cancer or to screen for patient needs. It may also be used as an outcome measure for evaluating programmes and models of care and may identify areas for service development that could ultimately improve the care and support received by patients with chronic cancer.

An audit of acute oncology services: patient experiences of admission procedures and staff utilisation of a new telephone triage system.

OBJECTIVES: In 2010, St. James Institute of Oncology (Leeds, UK) created a new acute oncology service (AOS) consisting of a new admissions unit with a nurse-led telephone triage (TT) system. This audit cycle (March 2011 and June 2013) evaluated patient experiences of the reconfigured AOS and staff use of the TT system. METHODS: Patient views were elicited via a questionnaire and semi-structured interviews. The TT forms were analysed descriptively evaluating completion and data quality, reported symptoms and their severity and advice given (including admission rates). RESULTS: Patients (n = 40) reported high satisfaction with the new AOS. However, 56 % of patients delayed 2 days or more before contacting the unit. In 2011, 26 % of all the admitted patients were triaged via the TT system; 133 TT forms were completed. In June 2013, 49 % of the admitted patients were triaged; 264 forms were completed. The most commonly reported symptoms on the TT forms were pain, pyrexia/rigors/infection, diarrhoea, vomiting and dyspnoea. Half of the patients using the TT system were admitted (52 % in 2011, 49 % in 2013). CONCLUSIONS: Our audit provided evidence of successful implementation of the TT system with the number of TT forms doubling from 2011 to 2013. The new AOS was endorsed by patients, with the majority satisfied with the care they received.