Self-reported cognitive functioning in postmenopausal breast cancer patients before and during endocrine treatment: findings from the neuropsychological TEAM side-study.

OBJECTIVE: This study aimed to evaluate self-reported cognitive functioning of postmenopausal breast cancer patients before and during endocrine treatment compared with healthy female controls, and to investigate associations between self-reported cognitive functioning, cognitive test performance and anxiety/depression, fatigue, and menopausal complaints. METHODS: Self-reported cognitive functioning, anxiety/depression, fatigue, menopausal complaints, and cognitive tests performance were assessed before (T1) and after 1 year (T2) of adjuvant endocrine treatment in postmenopausal chemotherapy-naïve breast cancer patients. Self-reported cognitive functioning was assessed by the cognitive failures questionnaire and interview questions concerning cognitive complaints. Patients participated in the TEAM-trial, a prospective randomized study investigating tamoxifen versus exemestane as adjuvant therapy for hormone-sensitive breast cancer. Identical information was obtained from healthy postmenopausal volunteers. RESULTS: Two measures for self-reported cognitive functioning provided the distinctive results. At T1 and T2, healthy controls reported a higher frequency of cognitive failures than patients; change over time did not differ between groups. The prevalence of cognitive complaints did not differ between the groups at T1, but change over time regarding attention/concentration complaints differed between groups, due to an increased prevalence in tamoxifen users. Self-reported cognitive functioning showed moderate associations with anxiety/depression, fatigue, and menopausal complaints. Cognitive test performance was not associated with self-reported cognitive functioning, but weakly with anxiety/depression and fatigue. CONCLUSION: Adjuvant therapy with tamoxifen and exemestane did not influence the self-reported frequency of cognitive failures. Increased attention/concentration complaints were observed in tamoxifen users, but not in exemestane users. This latter finding should be confirmed with better validated instruments.

Quality of life and consequences for daily life of familial adenomatous polyposis (FAP) family members.

AIM: The study aimed to document the impact of familial adenomatous polyposis (FAP) on health-related quality of life (HRQOL) and several practical aspects of daily life, and to identify factors significantly associated with HRQOL. This study is the first to compare HRQOL between patients with FAP, at-risk individuals and noncarriers. METHOD: A total of 525 individuals (response rate 64%) from 145 families at high risk for FAP completed a battery of self-report questionnaires assessing generic- and condition-specific HRQOL and the consequences of FAP for daily life. RESULTS: HRQOL was comparable to that of the general Dutch population. Surgically treated patients with FAP had significantly lower scores on several HRQOL domains compared with at-risk individuals, noncarriers and nonsurgically treated patients with FAP. Type of surgery was not significantly associated with HRQOL. Within the surgically treated group, postsurgical complications and comorbidity significantly affected HRQOL. Forty-one percent of patients reported that FAP had affected their working life. CONCLUSION: Surgically treated patients with FAP have significantly poorer HRQOL than other groups. The type of surgery and age at time of first surgery were not associated with HRQOL but surgical complications and comorbidity were. Patients should be informed of the consequences of FAP for work and other life domains.

Psychosocial impact of Von Hippel-Lindau disease: levels and sources of distress.

Von Hippel-Lindau disease (VHL) is a hereditary tumor susceptibility syndrome, characterized by an increased risk of developing multiple benign and malignant tumors at various sites and ages with limited preventive options. This study evaluates the prevalence of distress among VHL family members and factors associated significantly with such distress. Forty-eight families with a VHL mutation were identified via the nine family cancer clinics in the Netherlands. In total, 171 family members (carriers, 50% at-risk, non-carriers) were approached, of whom 123 (72%) completed a self-report questionnaire. Approximately 40% of the VHL family members reported clinically relevant levels of distress, approaching 50% among the carriers and, possibly even more striking, 36% among the non-carriers. Having lost a first degree relative due to VHL during adolescence (OR 11.2; 95% CI 1.4-86.9) was related significantly to heightened levels of distress. Approximately, only one-third of those who reported heightened levels of distress had received professional psychosocial support. A substantial percentage of family members experience clinically relevant levels of distress. We would recommend the introduction of a procedure for screening for distress in this vulnerable population. Special attention should be paid to those individuals who have lost a close relative due to VHL during adolescence.

Long-term compliance with endoscopic surveillance for familial adenomatous polyposis.

AIM: The study assessed compliance of patients with familial adenomatous polyposis (FAP) with endoscopic surveillance. METHOD: In this nationwide, cross-sectional study, individuals from FAP families registered with the Netherlands Foundation for the Detection of Hereditary Tumours were invited to complete a questionnaire on endoscopic screening experiences. RESULTS: A total of 328 individuals were eligible for the study of whom 85 were at risk for FAP, 108 had an intact rectum after a colectomy with ileorectal anastomosis (IRA), and 135 had had a pouch following a proctocolectomy with ileoanal anastomosis (IPAA). Based on medical record data, 20% of the at-risk group and 26% of the IRA-group were found to be undercompliant with surveillance advice which was associated significantly with perceived self-efficacy, use of sedatives during surveillance, pain after surveillance and low perceived benefits of surveillance (P < 0.05). CONCLUSION: One in five individuals at risk for FAP and one in four with a retained rectum are undercompliant with screening advice. We recommend that sedatives should be patient-tailored for FAP individuals undergoing surveillance and that adequate pain medication be provided after endoscopy.

Comparing childhood leukaemia treatment before and after the introduction of a parental education programme in Indonesia.

SETTING: Previously, treatment and the results of treatment for childhood acute lymphoblastic leukaemia (ALL) in Indonesia differed significantly between poor and prosperous patients. Poor patients received less individual attention from oncologists and access to parental education and donated chemotherapy was lacking. INTERVENTION: A structured parental education programme for both poor and prosperous parents was introduced in January 2004 to improve access to parental education and donated chemotherapy. The programme consisted of a video presentation, an information booklet, DVD, audiocassette, a statement-of-understanding for donated chemotherapy, and a complaints procedure. Informed consent was also sought. OBJECTIVE: Our study compared childhood ALL treatment outcome before and after the introduction of the parental education programme. DESIGN: The medical records of 283 children with ALL diagnosed before (1997-2002; n = 164) and after (2004-2006; n = 119) the introduction of the education programme were reviewed. Data on treatment results and parental socioeconomic status were collected. RESULTS: After the introduction of the education programme, treatment refusal decreased (from 14% to 2%) and event-free survival increased (from 13% to 29%) significantly among poor patients. Treatment dropout increased (from 0% to 13%) significantly among prosperous patients. Overall, toxic death (from 23% to 36%) increased significantly, but there was no significant difference in event-free survival. CONCLUSIONS: After introduction of the programme, treatment refusal decreased and event-free survival increased significantly among poor families. However, improved knowledge, skills and communication are still required to combat the high rates of toxic death and treatment dropout. Treatment intensity should be accompanied by improved supportive care.

Cognitive functioning of postmenopausal breast cancer patients before adjuvant systemic therapy, and its association with medical and psychological factors.

PURPOSE: This study aimed to identify medical and psychological predictors for cognitive performance of breast cancer (BC) patients before the start of adjuvant systemic treatment and to compare cognitive performance between BC patients and healthy controls adjusting for medical and psychological variables. MATERIAL: 205 postmenopausal BC patients underwent pre-treatment neuropsychological tests and provided medical and psychological data. 124 healthy controls underwent the same assessment. RESULTS: 'Treatment for diabetes mellitus' and/or 'hypertension', 'less hours spent on cognitively stimulating activities', 'fewer days since surgery' and 'more reproductive years' were associated with worse cognitive performance in the BC patients, independent of age and IQ. Cognitive differences between BC patients and healthy controls could partly be explained by the evaluated variables. CONCLUSION: The results stress the need for adjustment for pre-treatment cognitive differences between study groups, and also indicate that further research into pre-treatment cognitive dysfunction is warranted.

The effect of chronic benzodiazepine use on cognitive functioning in older persons: good, bad or indifferent?

OBJECTIVE: This study investigates the effects of benzodiazepine (BZ) use on cognitive performance in elderly persons in a longitudinal design. STUDY DESIGN AND SETTING: Data were obtained from the Longitudinal Aging Study Amsterdam (LASA), in the Netherlands. 2,105 respondents (>/=62 years of age) were included and had repeated measurements over a period of 9 years. For all BZs the type, dosage, frequency and duration of use was measured. The equivalent of a dose of diazepam was determined with regard to type and dosage and a cumulative dosage was calculated. General cognitive functioning was measured with the Mini-Mental State Examination, information processing speed was measured with the coding task, fluid intelligence with Raven's Coloured Progressive Matrices and episodic memory with the Auditory Verbal Learning Test. Multilevel analyses were used to investigate the relationship between BZ use and cognitive decline. RESULTS: A negative effect of BZ use on cognitive performance was found. However, the effect sizes were very small. CONCLUSION: This study suggests that both duration and cumulative exposure to BZ has a small negative effect on the long-term cognitive functioning of elderly people in the community.