Ilse Mesters

Openness to discuss cancer in the nuclear family: scale, development, and validation.

Objective To describe the development and validation of a scale for assessing openness to discuss cancer in the family. Method: Two studies were conducted. Study 1 was a cross-sectional study designed to test the factor structure of the scale. Four hundred ninety-eight patients with either breast cancer or Hodgkins disease were interviewed. In Study 2, a longitudinal study, 133 patients with cancer in the head and neck were tested at four points in time: just before treatment, 6 weeks, 13 weeks, and 52 weeks after treatment. Study 2 aimed to confirm the factor structure established in Study 1, to test for construct validity in a new population, to test the psychometric properties of the Openness Scale, and to test the scales sensitivity to change. Results: In Study 1, a one-factor solution was revealed, resulting in a scale of eight items. In Study 2, the factor structure found in Study 1 was confirmed. In line with theoretical expectations, subjects who perceived their communication about cancer as more open showed more positive rehabilitation outcomes especially at 13 weeks after treatment (less uncertainty, fewer negative feelings, more control, higher self-esteem, fewer psychological and physical complaints). Furthermore, more open communication related with more support by family members and more discussion with the partner. The scale was found to be stable over time. Conclusions: The scales construction and subsequent analysis show that open discussion of problems (related to cancer) in the family can be measured reliably with an eight-item instrument. Additional validation of the scale is indicated.

A Systematic Review of the Impact of Genetic Counseling on Risk Perception Accuracy

This review presents an overview of the impact of genetic counseling on risk perception accuracy in papers published between January 2000 and February 2007. The results suggest that genetic counseling may have a positive impact on risk perception accuracy, though some studies observed no impact at all, or only for low-risk participants. Several implications for future research can be deduced. First, future researchers should link risk perception changes to objective risk estimates, define risk perception accuracy as the correct counseled risk estimate, and report both the proportion of individuals who correctly estimate their risk and the average overestimation of the risk. Second, as the descriptions of the counseling sessions were generally poor, future research should include more detailed description of these sessions and link their content to risk perception outcomes to allow interpretation of the results. Finally, the effect of genetic counseling should be examined for a wider variety of hereditary conditions. Genetic counselors should provide the necessary context in which counselees can understand risk information, use both verbal and numerical risk estimates to communicate personal risk information, and use visual aids when communicating numerical risk information.

Motives of Belgian Adolescents for Using Sunscreen: The Role of Action Plans

The first objective of this study was to analyze the differences between adolescents who use sunscreen frequently and those who do not. The second objective was to explore the importance of specific action plans when planning sunscreen use. Data was gathered among 602 Belgian secondary school students. Frequent and infrequent users of sunscreen were compared on several determinants related with sunscreen use, and a regression analysis on sunscreen use was done. Frequent users of sunscreen measures had significantly higher scores on attitudes, social influence, self-efficacy, some awareness factors, intention, and action plans. The integrated model for exploring motivational and behavioral change (I-Change model) explained 57% of the total variance of using sunscreen every 2 hours. Frequent sunscreen use was most strongly predicted by action plans, followed by positive intentions to use sunscreen, wearing protective clothing, seeking shade, attitude toward sunscreen use, education, social influence, and exposure to the sun. Our results suggest that skin cancer prevention programs aimed at promoting sunscreen use need to emphasize the advantages of sunscreen to infrequent users and to increase feelings of self-efficacy. Moreover, support by friends and parents should be stimulated. Finally, developing specific action plans for the use of sunscreen should be promoted to more effectively translate general intentions into actual sunscreen use. (Cancer Epidemiol Biomarkers Prev 2006;15(7):1360–6)

Informing one's family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study.

Background: The family-link approach of case finding is considered the fastest and most efficient approach to trace people with hereditary disease. Therefore, there is a need to understand if, why, and how people with hereditary non-polyposis colorectal cancer (HNPCC) inform their biological family.Aim: To explore people’s perspective on informing one’s biological family regarding a hereditary predisposition for HNPCC.Method: In-depth interviews were conducted with 30 people recruited from the database of the Netherlands Foundation for Detection of Hereditary Tumours (STOET). Interviews were transcribed and analyzed thematically.Findings: Disclosure was stimulated if people felt morally obliged to do so or when they anticipated regret if something happened because it is preventable. Motivation to disclose seemed to increase if there were, especially fatal, cancer cases in the family. Presence of external cues (e.g. professionals) appeared important for disclosure as well. Disrupted and tense family relations were reasons not to disclose, as well as young age of the message recipients and negative experiences at their first attempt to disclose (a novel finding). Disclosure was merely restricted to the nuclear family. A personal approach in this respect was preferred. With respect to content of the disclosure, participants reported to solely announce the presence of the hereditary defect and the possibility of testing. It was mostly considered the recipients’ responsibility and own choice to obtain further (technical/medical) information.

Quality of Life After Self-Management Cancer Rehabilitation: A Randomized Controlled Trial Comparing Physical and Cognitive-Behavioral Training Versus Physical Training

Objective: To conduct a randomized controlled trial and compare the effects on cancer survivors’ quality of life in a 12-week group-based multidisciplinary self-management rehabilitation program, combining physical training (twice weekly) and cognitive-behavioral training (once weekly) with those of a 12-week group-based physical training (twice weekly). In addition, both interventions were compared with no intervention. Methods: Participants (all cancer types, medical treatment completed ≥3 months ago) were randomly assigned to multidisciplinary rehabilitation (n = 76) or physical training (n = 71). The nonintervention comparison group consisted of 62 patients on a waiting list. Quality of life was measured using the RAND-36. The rehabilitation groups were measured at baseline, after rehabilitation, and 3-month follow-up, and the nonintervention group was measured at baseline and 12 weeks later. Results: The effects of multidisciplinary rehabilitation did not outperform those of physical training in role limitations due to emotional problem (primary outcome) or any other domains of quality of life (all p > .05). Compared with no intervention, participants in both rehabilitation groups showed significant and clinically relevant improvements in role limitations due to physical problem (primary outcome; effect size (ES) = 0.66), and in physical functioning (ES = 0.48), vitality (ES = 0.54), and health change (ES = 0.76) (all p < .01). Conclusions: Adding a cognitive-behavioral training to group-based self-management physical training did not have additional beneficial effects on cancer survivors’ quality of life. Compared with the nonintervention group, the group-based self-management rehabilitation improved cancer survivors’ quality of life. PT = physical training; CBT = cognitive-behavioral training; PT+CBT = physical training plus cognitive-behavioral training; WLC = waiting-list comparison; QoL = quality of life; ANOVA = analysis of variance; ES = effect size.

Effects and moderators of exercise on quality of life and physical function in patients with cancer: An individual patient data meta-analysis of 34 RCTs

This individual patient data meta-analysis aimed to evaluate the effects of exercise on quality of life (QoL) and physical function (PF) in patients with cancer, and to identify moderator effects of demographic (age, sex, marital status, education), clinical (body mass index, cancer type, presence of metastasis), intervention-related (intervention timing, delivery mode and duration, and type of control group), and exercise-related (exercise frequency, intensity, type, time) characteristics. Relevant published and unpublished studies were identified in September 2012 via PubMed, EMBASE, PsycINFO, and CINAHL, reference checking and personal communications. Principle investigators of all 69 eligible trials were requested to share IPD from their study. IPD from 34 randomised controlled trials (n=4519 patients) that evaluated the effects of exercise compared to a usual care, wait-list or attention control group on QoL and PF in adult patients with cancer were retrieved and pooled. Linear mixed-effect models were used to evaluate the effects of the exercise on post-intervention outcome values (z-score) adjusting for baseline values. Moderator effects were studies by testing interactions. Exercise significantly improved QoL (β=0.15, 95%CI=0.10;0.20) and PF (β=0.18, 95%CI=0.13;0.23). The effects were not moderated by demographic, clinical or exercise characteristics. Effects on QoL (βdifference_in_effect=0.13, 95%CI=0.03;0.22) and PF (βdifference_in_effect=0.10, 95%CI=0.01;0.20) were significantly larger for supervised than unsupervised interventions. In conclusion, exercise, and particularly supervised exercise, effectively improves QoL and PF in patients with cancer with different demographic and clinical characteristics during and following treatment. Although effect sizes are small, there is consistent empirical evidence to support implementation of exercise as part of cancer care.

Improved physical fitness of cancer survivors: A randomised controlled trial comparing physical training with physical and cognitive-behavioural training

We compared the effect of a group-based 12-week supervised exercise programme, i.e. aerobic and resistance exercise, and group sports, with that of the same programme combined with cognitive-behavioural training on physical fitness and activity of cancer survivors. One hundred and forty seven cancer survivors (all cancer types, medical treatment ≥3 months ago) were randomly assigned to physical training (PT, n=71) or PT plus cognitive-behavioural training (PT+CBT, n=76). Maximal aerobic capacity, muscle strength and physical activity were assessed at baseline and post-intervention. Analyses using multilevel linear mixed-effects models showed that cancer survivors’ physical fitness increased significantly in PT and PT+CBT from baseline to post-intervention. Changes did not differ between PT and PT+CBT. Physical fitness of cancer survivors was improved following an intensive physical training programme. Adding a structured cognitive-behavioural intervention did not enhance the effect.

Adherence-Related Behavior in Adolescents with Asthma: Results from Focus Group Interviews

Focus group interviews were conducted with 14 adolescents with asthma to explore self-management behavior, in particular with regard to adherence behavior. In addition, the adolescents discussed their feelings about having asthma, gave insight into how they evaluate the provided health care, and made recommendations for healthcare providers and for the development of patient education materials. The majority of participants did not take their prophylactic asthma medication regularly, and were rather late in starting to use their bronchodilator. They were sometimes fed up with having asthma. Moreover, the majority of participants were not always frank in telling their pediatrician how they managed their asthma. Finally, they found it essential that information about asthma should be given personally and not by means of leaflets, and recommended that healthcare providers should use audio-visual aids to illustrate what they are explaining. The results of the focus group interviews have been used for the development of an intervention program which aims at enhancing adherence in adolescents with asthma.

Effectiveness of a Multidisciplinary Education Protocol in Children with Asthma (0-4 Years) in Primary Health Care

This paper describes the results of an asthma self-management protocol delivered to parents of children aged 0-4 years. The protocol was delivered by general practitioners (GPs), community nurses, asthma nurses, and doctors to child health centers. It consisted of 16 educational modules developed after an initial needs assessment of parents and a task analysis of primary care practitioners. The program was evaluated by means of an experimental design. Parents participating in the program had significantly more knowledge, a more favorable attitude toward asthma, and a higher self-efficacy score with respect to performing asthma self-management behaviors. Also, they reported performing self-management behaviors more frequently than parents in the control group. One-year follow-up results, which were collected for parents in the treatment group only, showed that the described changes were sustained. Further, the treatment group was found to have decreased its emergency and nonemergency use of the physicians office and to have a reduction in (reported) asthma severity. Process evaluation indicated that most modules were provided by the GPs to nearly all parents. After parents had read the modules at home, almost all the information was discussed in the next contact. GPs seldom referred patients to the community nurses, although this was suggested in the protocol.

Cancer-Related Fatigue and Rehabilitation: A Randomized Controlled Multicenter Trial Comparing Physical Training Combined With Cognitive-Behavioral Therapy With Physical Training Only and With No Intervention

Background Research suggests that cancer rehabilitation reduces fatigue in survivors of cancer. To date, it is unclear what type of rehabilitation is most beneficial. Objective This randomized controlled trial compared the effect on cancer-related fatigue of physical training combined with cognitive behavioral therapy with physical training alone and with no intervention. Design In this multicenter randomized controlled trial, 147 survivors of cancer were randomly assigned to a group that received physical training combined with cognitive-behavioral therapy (PT+CBT group, n=76) or to a group that received physical training alone (PT group, n=71). In addition, a nonintervention control group (WLC group) consisting of 62 survivors of cancer who were on the waiting lists of rehabilitation centers elsewhere was included. Setting The study was conducted at 4 rehabilitation centers in the Netherlands. Patients All patients were survivors of cancer. Intervention Physical training consisting of 2 hours of individual training and group sports took place twice weekly, and cognitive-behavioral therapy took place once weekly for 2 hours. Measurements Fatigue was assessed with the Multidimensional Fatigue Inventory before and immediately after intervention (12 weeks after enrollment). The WLC group completed questionnaires at the same time points. Results Baseline fatigue did not differ significantly among the 3 groups. Over time, levels of fatigue significantly decreased in all domains in all groups, except in mental fatigue in the WLC group. Analyses of variance of postintervention fatigue showed statistically significant group effects on general fatigue, on physical and mental fatigue, and on reduced activation but not on reduced motivation. Compared with the WLC group, the PT group reported significantly greater decline in 4 domains of fatigue, whereas the PT+CBT group reported significantly greater decline in physical fatigue only. No significant differences in decline in fatigue were found between the PT+CBT and PT groups. Conclusions Physical training combined with cognitive-behavioral therapy and physical training alone had significant and beneficial effects on fatigue compared with no intervention. Physical training was equally effective as or more effective than physical training combined with cognitive-behavioral therapy in reducing cancer-related fatigue, suggesting that cognitive-behavioral therapy did not have additional beneficial effects beyond the benefits of physical training.