Patient's needs and preferences in routine follow-up after treatment for colorectal cancer

Abstract

Background: Routine follow-up is a part of the standard medical care after treatment for colorectal cancer (CRC) with curative intent. Medical opinions of the clinical value of oncological follow-up are not uniform. There are no studies on the needs and expectations of Dutch patients treated for colorectal cancer towards the follow-up process. Aim: To investigate the needs and preferences of patients treated for CRC with curative intent, to explore the effect of length of follow-up after treatment on this needs and preferences and to make recommendations to optimize care. Methods: A total of 127 asymptomatic and disease-free patients treated for CRC in the period 1 January 2001 till 31 December 2003 or in the period 1 January 2006 till 31 August 2006 were identified and were sent a standardized questionnaire about needs and preferences towards follow-up. 118 completed questionnaires could be used for analyses. Results: Participants had high expectations for follow-up care concerning detection of recurrences and metastases and with that the life expectancy. Most of them reported a positive attitude towards follow-up: it reassured them and they appreciated the communication with the physician. Visits were not anticipated negatively with nervous distress. The investigations (colonoscopy, ultrasonography, blood tests) were not found burdensome, but a majority of the patients extremely disliked being reminded to the initial disease as a result of follow-up. Most patients were content with the investigation intervals (blood tests, colonoscopy and ultrasonography). One fifth to one third of all participants would appreciate contact with a social worker or a pastoral care provider or wanted information about self-help groups. During the follow-up visits patients would like to talk about: effects of treatment, prognosis, lifestyle after treatment, heredity factors, prevention, nutrition, fatigue, pain, changed stools, stoma and fear. Nearly all patients would be distressed when follow-up would stop after several years. Length of follow-up was not related to the subjects mentioned above. Length of follow-up seemed to lower fear of recurrence. The preference of the frequency of follow-up visits was also related to length of follow-up. A majority would prefer follow-up by a surgeon or a gastroenterologist. The latter was mostly preferred by patients with longer follow-up. A majority would like additional investigations be part of the follow-up visits, especially in the group with longer follow-up. Conclusions: Patients treated for CRC reported a strong preference for follow-up, which could provide reassurance, information and psychological support. There are high expectations concerning prevention of disease recurrence in follow-up care, by which the advantages of invasive investigations outweigh the disadvantages. Length of follow-up has only effect on fear of recurrence, the preference of visit frequency and additional investigations.