Follow-up care after childhood cancer: Survivors’ expectations and preferences for care

• Published in: European journal of cancer (1990) Vol. 45; no. 9; pp. 1616 - 1623
• Main Authors: Michel, G, Greenfield, D.M, Absolom, K, Ross, R.J, Davies, H, Eiser, C
• Format: Journal Article
• Language: English
• Published: Kidlington Elsevier Ltd 01.06.2009; Elsevier
• Subjects: Adolescent; Adult; Biological and medical sciences; Cancer care; Child; Consultants; Delivery of Health Care - organization & administration; England; Female; Hematology, Oncology and Palliative Medicine; Humans; Long-term care; Long-Term Care - organization & administration; Long-Term Care - psychology; Male; Medical sciences; Middle Aged; Models, Organizational; Neoplasm; Neoplasms - rehabilitation; Patient Satisfaction; Pharmacology. Drug treatments; Psychometrics; Quality of Life; Survivors; Survivors - psychology; Tumors; Young Adult; England; Neoplasm; Cancer care; Child; Long-term care; Survivors; Human; Survivor; Malignant tumor; Care; Cancerology; Follow up study; Preference; Long term care; Cancer
• ISSN: 0959-8049; 1879-0852
• DOI: 10.1016/j.ejca.2009.02.026

Abstract Aims To describe (1) self-rated quality of life, late effects and perceived future vulnerability, (2) expectations before a follow-up appointment, subsequent satisfaction and preferences for different models of care and (3) differences between survivors in quality of life, perceived late effects, vulnerability, expectations regarding follow-up, information needs (topics they want to and did discuss) and preferences for different models of care depending on risk stratification among childhood cancer survivors. Method One hundred and twelve of 141 survivors (18–45 years), diagnosed before 16 years and >5 years since diagnosis completed questionnaires before and after a follow-up appointment (or an abridged questionnaire if they did not attend an appointment within the study period). We collected data on physical (physical component score [PCS]) and mental (mental component score [MCS]) quality of life, late effects, future vulnerability and expectations about care ( clinical : identification of late effects; supportive : employment, relationships). Medical information was extracted from case notes. Results MCS and PCS were comparable to population norms, but 55.5% of survivors reported ⩾1 late effect (range 1–9). Clinical care was rated more highly than supportive care ( p < 0.001) especially in those with worse PCS ( p = 0.042). Supportive care was rated highly by survivors who reported more late effects ( p = 0.040), higher future vulnerability ( p < 0.001) and lower MCS ( p = 0.005), and by women ( p = 0.014). Regardless of risk stratification, consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up, p < 0.001). Conclusion Childhood cancer survivors are in favour of sustaining long-term follow-up care within the existing consultant-led model but this is not feasible given the increasing number of survivors. In the future we therefore need to develop alternative services which will provide the best medical care for each survivor’s needs.