Do patients’ information needs decrease over the course of radiotherapy?

PURPOSE: We aimed to investigate if cancer patients’ information needs decrease during radiotherapy and if so, which patient, consultation and radiation oncologist characteristics are associated with a decrease in information needs over time. METHODS: In this longitudinal study, patients (n = 104) completed a baseline questionnaire a week before the initial radiotherapy consultation, immediately following this initial consultation, and 1 week prior to the first follow-up visit, which took place on average 3–5 weeks after the initial visit. Besides information needs, measured by the Information Preference for Radiotherapy Patients scale, the questionnaire assessed patient, consultation and radiation oncologist characteristics. RESULTS: Information needs decreased over time, but remained at a high level. Being religious, being male, having low health literacy and higher perceived involvement during the consultation were all statistically significantly associated to a decrease in information needs on specific domains (e.g. procedures or side effects). CONCLUSIONS: Cancer patients’ information needs decline between the initial consultation and the first follow-up visit, but remain high. It is therefore advised to investigate the patients’ information needs at every radiotherapy visit and not rely on giving information just once. Furthermore, radiation oncologists should check if the information given at first consultation is understood and remembered. By those means, tailored information giving becomes possible

Gatekeeper role of gastroenterologists and surgeons in recognising and discussing familial colorectal cancer

This study aimed to gain insight into the gatekeeper role of surgeons and gastroenterologists (including residents) during a first consultation at a tertiary gastro-intestinal centre regarding referral for genetic counselling, and to test the feasibility of a checklist for indications for referral. Consecutive patients were invited before and after introduction of a checklist, to complete a questionnaire assessing their perception of discussing cancer genetic topics. Initial consultations were audiotaped to assess the quality of this discussion by gastroenterologists and surgeons. Data on completeness of the checklist and referral were collected from medical files. No significant differences were found between the Before and After group regarding patients' reports of discussing cancer in the family (77%, n = 34 vs 89%, n = 33, p = 0.16). In 28% (n = 10) of the audiotaped consultations family history was adequately discussed, in 58% (n = 21) it was considered inadequate and in 14% (n = 5) of consultations it was not discussed at all. A checklist was present in 53% (n = 27) of the medical files. Of these, 5 (19%) were incomplete. Gastroenterologists and surgeons (in training) have difficulty in fulfilling their gatekeeper role of recognizing patients at familial risk for CRC. Although they often discuss familial cancer during the initial consultation, their exploration seems insufficient to reveal indications for referral for genetic counselling. Therefore, healthcare professionals should not only understand genetics and the importance of cancer family history, but also be effective in the communication of this subject to enable more adequate referral of patients for genetic counsellin

Attitudes toward genetic testing in childhood and reproductive decision-making for familial adenomatous polyposis

Childhood DNA testing, prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are available for familial adenomatous polyposis (FAP). However, the use of PND and PGD is controversial. The purpose of this study was to investigate attitudes toward, and experiences with, childhood DNA testing, PND and PGD among members of families at high risk for FAP. In this nationwide, cross-sectional study, questionnaires were sent to individuals from families at high risk for FAP assessing attitudes toward and experiences with childhood testing, PND and PGD, as well as several sociodemographic, clinical and psychosocial variables. Of the individuals from FAP families invited to participate in the study, 525 members participated (response rate=64%). Most parents who had children who were minors (n=93) (82%) were satisfied with the DNA testing procedure. One-third of all individuals wanted DNA testing for their children before age 12. Forty percent of FAP patients indicated that the disease influenced their desire to have children. Only 15% considered termination of pregnancy for FAP acceptable. Approximately 30% of individuals with a FAP diagnosis and their partners considered PND and PGD as acceptable for themselves. A positive attitude was associated with higher levels of guilt and a positive attitude toward termination of pregnancy. Importantly, of those with FAP at childbearing age, 84% had had no previous information at all about either PND or PGD. Future efforts should be aimed at educating FAP family members about reproductive options, allowing them to make an informed choice about family planning. Routine discussion of all reproductive options with a medical specialist should be encourage

Do radiation oncologists tailor information to patients needs? And, if so, does it affect patients?

Background. Our study aims to investigate whether information given by radiation oncologists to their patients is tailored to the patient's desired level of information and, if so, what the effect of tailoring is on patient-reported outcomes, i.e. satisfaction, health, anxiety and self-efficacy. Material and methods. Consecutive radiotherapy patients (n = 150) completed a baseline questionnaire one week before their initial consultation, immediately following this consultation, and again one week prior to their first follow-up visit. The initial consultation was videotaped and 10 radiation oncologists' information giving behavior (content and duration) analyzed. Results. The overall amount of information provided by the radiation oncologists matched with patients' information needs in 50.8% (k = 0.07) of the consultations. No significant associations between tailored information giving and patient-reported outcomes were found, except for tailoring of information on procedures, and patients' anxiety and global health. These associations were no longer significant when correcting for patients' background characteristics. Conclusion. This study shows that radiation oncologists poorly tailor their information to the needs of their patients. However, lack of tailoring is not associated with worse patient-reported outcomes. Until more evidence is available, radiation oncologists may explicitly ask patients about their information preferences and tailor the information provided accordingl

Psychological distress and quality of life of partners of individuals with familial adenomatous polyposis

Objective: Familial adenomatous polyposis (FAP) is a genetic condition characterized by the development of multiple adenomas in the colorectum that could lead to colorectal cancer. Our aim was to assess levels and predictors of psychological distress and quality of life (QOL) among partners of FAP-patients. Methods: A nationwide, cross-sectional survey using validated self-report questionnaires assessing psychological distress and QOL. Results: One hundred and twenty-nine partners completed the questionnaire (84% response rate), 30% of whom reported moderate-to-severe levels of distress. The partners' distress was associated significantly with the patients' distress, having children, and feelings of guilt. Fifty-seven percent of the partners with moderate-to-severe distress levels had received professional psychosocial support. Partners did not differ significantly from the general population in QOL. However, 9-21% reported that FAP had affected their work, leisure time activities, and relationships. Conclusions: Clinicians should be particularly alert for heightened distress levels in partners of patients who are themselves distressed, and among those with children. Copyright © 2010 John Wiley & Sons, Lt

Do patients' information needs decrease over the course of radiotherapy?

We aimed to investigate if cancer patients' information needs decrease during radiotherapy and if so, which patient, consultation and radiation oncologist characteristics are associated with a decrease in information needs over time. In this longitudinal study, patients (n = 104) completed a baseline questionnaire a week before the initial radiotherapy consultation, immediately following this initial consultation, and 1 week prior to the first follow-up visit, which took place on average 3-5 weeks after the initial visit. Besides information needs, measured by the Information Preference for Radiotherapy Patients scale, the questionnaire assessed patient, consultation and radiation oncologist characteristics. Information needs decreased over time, but remained at a high level. Being religious, being male, having low health literacy and higher perceived involvement during the consultation were all statistically significantly associated to a decrease in information needs on specific domains (e.g. procedures or side effects). Cancer patients' information needs decline between the initial consultation and the first follow-up visit, but remain high. It is therefore advised to investigate the patients' information needs at every radiotherapy visit and not rely on giving information just once. Furthermore, radiation oncologists should check if the information given at first consultation is understood and remembered. By those means, tailored information giving becomes possibl

Health professionals' evaluation of delivering treatment-focused genetic testing to women newly diagnosed with breast cancer

Increasingly, women are offered genetic testing shortly after diagnosis of breast cancer to facilitate decision-making about treatment, often referred to as 'treatment-focused genetic testing' (TFGT). As understanding the attitudes of health professionals is likely to inform its integration into clinical care we surveyed professionals who participated in our TFGT randomized control study. Thirty-six completed surveys were received (response rate 59%), 15 (42%) health professionals classified as genetic and 21 (58%) as non-genetic. Mainly positive experiences with participating in the TFGT trial were reported. The high cost of testing and who could best deliver information about TGFT to the patient were raised as key constraints to implementation of TFGT in usual care. More non-genetic than genetic health professionals (44 vs 8%) preferred that the surgeon provide the information for decision-making about TFGT. While costs of TFGT itself and the time and effort of staff involved were perceived barriers, as testing costs become lower, it is expected that TFGT will become a routine part of standard clinical care for patients at high genetic risk in the near futur