Information needs and information seeking behaviour of patients during follow-up of colorectal cancer in the Netherlands.

PURPOSE: Adequately informing patients is considered crucial in cancer care, but need for information and information seeking behaviour of colorectal cancer (CRC) patients in the Netherlands are currently not well known. METHODS: In a prospective study, patients participating in a specialty, hospital-based follow-up program completed three consecutive surveys over a 6-month period to analyse their information need and information seeking behaviour. RESULTS: Patients (n = 259) felt well informed about their treatment (86%), disease (84%), and follow-up program (80%), but less well informed about future expectations (49%), nutrition (43%), recommended physical activity (42%), and heredity of cancer (40%). The need for more information on these subjects remained constant over the first five postoperative years. Patients who were younger, who had undergone chemotherapy, or who had comorbid conditions needed more information on several subjects. One in three patients searched for information themselves, mostly on the Internet. One in four patients consulted a health care provider for information, mostly their GP. Younger and more educated patients more often searched for information themselves, while patients undergoing chemotherapy more often consulted the hospital nurse. Information seeking behaviour remained constant over time. CONCLUSIONS: This study showed where current information provision is perceived as adequate and on which subject improvements can be made. It identifies information seeking behaviour and proposes ways to personalize information provision. IMPLICATIONS FOR CANCER SURVIVORS: The GP is most frequently consulted for information; involving GPs in CRC follow-up could improve information provision on several subjects for several patients.

Colorectal cancer patients' preferences for type of caregiver during survivorship care.

PURPOSE: Colorectal cancer (CRC) survivors are currently included in a secondary care-led survivorship care programme. Efforts are underway to transfer this survivorship care to primary care, but met with some reluctance by patients and caregivers. This study assesses (1) what caregiver patients prefer to contact for symptoms during survivorship care, (2) what patient factors are associated with a preferred caregiver, and (3) whether the type of symptom is associated with a preferred caregiver. METHODS: A cross-sectional study of CRC survivors at different time points. For 14 different symptoms, patients reported if they would consult a caregiver, and who they would contact if so. Patient and disease characteristics were retrieved from hospital and general practice records. RESULTS: Two hundred and sixty patients participated (response rate 54%) of whom the average age was 67, 54% were male. The median time after surgery was seven months (range 0-60 months). Patients were divided fairly evenly between tumour stages 1-3, 33% had received chemotherapy. Men, patients older than 65 years, and patients with chronic comorbid conditions preferred to consult their general practitioner (GP). Women, patients with stage 3 disease, and patients that had received chemotherapy preferred to consult their secondary care provider. For all symptoms, patients were more likely to consult their GP, except for (1) rectal blood loss, (2) weight loss, and (3) fear that cancer had recurred, in which case they would consult both their primary and secondary care providers. Patients appreciated all caregivers involved in survivorship care highly; with 8 out of 10 points. CONCLUSIONS: CRC survivors frequently consult their GP in the current situation, and for symptoms that could alarm them to a possible recurrent disease consult both their GP and secondary care provider. Patient and tumour characteristics influence patients' preferred caregiver.

Follow-up of colon cancer patients; causes of distress and need for supportive care: Results from the ICARE Cohort Study.

BACKGROUND: Colon cancer survivors experience physical and psychosocial problems that are currently not adequately addressed. This study investigated distress in patients after curative surgery for colon cancer and studied how this corresponds with the need for supportive care. METHODS: Prospective cohort of patients with stage I-III colon carcinoma, treated with curative intent, currently in follow-up at 6 different hospitals. A survey recorded symptoms, experienced problems, and (un)expressed needs. Satisfaction with supportive care was recorded. RESULTS: Two hundred eighty four patients were included; 155 males and 129 females, with a mean age of 68 years (range 33-95), and a median follow-up of 7 months. 227 patients completed the survey. Patients experienced a median of 23 symptoms in the week before the survey, consisting of a median of 10 physical, 8 psychological and 4 social symptoms. About a third of these symptoms was felt to be a problem. Patients with physical problems seek supportive care in one in three cases, while patients with psychosocial problems only seek help in one in eight cases. Patients who recently finished treatment, finished adjuvant chemotherapy, or had a stoma, had more symptoms and needed more help in all domains. Patients most frequently consulted general practitioners (GPs) and surgeons, and were satisfied with the help they received. CONCLUSION: Colon cancer survivors experience many symptoms, but significantly fewer patients seek help for a psychosocial problem than for a physical problem. Consultations with supportive care are mainly with GPs or surgeons, and both healthcare providers are assessed as providing satisfying care.