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

Item does not contain fulltextBackground: 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.3 p

Inadequate referral for genetic evaluation of patients with CRC

Item does not contain fulltextBackgrounds and Aims: In the Netherlands annually 4500 individuals die due to colorectal cancer (CRC). Identification of people with a high risk of CRC can reduce the prevalence and mortality of colorectal carcinoma. For some individuals additional genetic investigation or a thorough follow up through regular colonoscopies is indicated. In selecting individuals with an elevated risk of CRC a comprehensive family history is essential. Individuals who meet the criteria of the Bethesda guidelines for hereditary colon cancer should be referred to a genetic centre. Our aim was to evaluate which percentage of individuals, who met the Bethesda criteria, actually were referred to a genetic centre. Methods: A self-administered family history questionnaire was send to 176 individuals operated for CRC in the Gelderse Vallei Hospital from January 2004 till December 2005 and still alive in March 2007. Completed questionnaires were returned by 154 individuals (87.5%). Results: 39 individuals (25.3%)met the Bethesda criteria and should have been referred. However, only 6 of them (15.4%) were actually referred to a genetic centre. Conclusions: This study shows that the present accuracy in referring patients with CRC often fails. The majority of individuals who should be referred to a genetic centre are not. More interest in identification of patients with elevated risk of CRC through criteria based on family history is essential.1 p

Measuring Theory of Mind in adolescents with language and communication problems: An ecological perspective

We tested if the newly designed ToMotion task reflects a single construct and if the atypical groups differ in their performance compared to typically developing peers. Furthermore, we were interested if ToMotion maps a developmental sequence in a Theory of Mind (ToM) performance as exemplified by increasing difficulty of the questions asked in every item. The sample consisted of 13 adolescents that have been diagnosed with a developmental language disorder (DLD) and 14 adolescents that are deaf or hard of hearing (DHH). All of these adolescents were in special schools for secondary vocational education. The control group existed of 34 typical developing adolescents (TD) who were in regular intermediate vocational education, ranging from level 2 to 4. The ToMotion, available in a spoken Dutch version and in a version in Sign Language of the Netherlands (SLN), was used to map ToM abilities. An attempt has been made to fill the gap of missing studies of ToM in adolescents by developing a new measuring instrument. In conclusion, assessing ToM with the ToMotion results in a picture that DHH adolescents score lower than TD peers. However, their scores are as consistent as those of the TD peers. The picture of DLD adolescents is the reverse. They show no differences in ToM scores, but seem to be somewhat more inconsistent compared to TD peers. We provide a discussion on those results and its implications for future research. What this paper adds? The current study introduces a new visual Theory of Mind (ToM) task, ToMotion, designed specifically to assess ToM in adolescents in an ecologically valid way and adapted to the needs of adolescents with language and communication difficulties

Measuring social support in psychiatric patients and controls: Validation and reliability of the shortened Close Persons Questionnaire

Although previous studies have underlined the protective role of social support for physical and psychological health, no self-report questionnaires are validated for measuring social support in large-scale psychiatric epidemiological studies. In the current study, we aim to validate the shortened version of the Close Persons Questionnaire (CPQ), a self-report questionnaire that is administered twice to measure social support received from the partner (CPQ-p) as well as from a close friend/family member (CPQ-f). Data of psychiatric patients (n = 1891) and controls (n = 1872) from three Dutch epidemiological studies that assessed determinants of psychopathology were used to validate the shortened CPQ. This included determining factor structure and reliability for the different scales. Using multigroup confirmatory factor analyses, a four-factor model proved to be the best fitting model for both the CPQ-p and CPQ-f. The resulting subscales -emotional support, practical support, negative support experiences, inadequacy of support-showed moderate to good reliability for both the CPQ-p and the CPQ-f, and were all correlated with other social measures in the expected directions. The shortened version of the CPQ proves to be a valid and reliable measure of social support for both psychiatric patients and controls. Further research is needed to assess usability of the shortened version of the CPQ for clinical practice