Helen Dowling Instituut

ObjectiveThe OncoAppstore is developed to increase access and availability of reliable cancer-relevant online self-management applications for all Dutch people directly affected by cancer and their relatives, without referral. By providing health credit, the applications are available without personal costs.MethodsThis study consists of three parts. Part 1 is a prospective observational study, aiming to compare characteristics of OncoAppstore users with those who participate but did not buy an application (non-users). The number and type of purchased applications and used credit will be monitored. Moreover, health-related quality of life (HRQoL) and user experience will be measured after the first application purchase or when the health credit expires (i.e. after 6 months), and 3 and 6 months thereafter. Chi-square and Mann–Whitney U tests compare OncoAppstore users with non-users. Part 2 is an observational study that will compare users directly affected by cancer with the general Dutch cancer population with respect to sociodemographic variables, employment, income, healthcare expenditures, and care accessibility. Differences between the two groups will be tested using Chi-square, Fisher’s exact, and Mann–Whitney U tests. Part 3 consists of focus groups among OncoAppstore users and non-users. The focus groups will be conducted to identify unmet needs, user preferences, usability, acceptability, and suggestions for improving the OncoAppstore. Thematic analyses will be used to analyse the qualitative data.Conclusion and implicationsData on HRQoL, healthcare expenditures, usability, and accessibility of the OncoAppstore will provide insights needed to improve the infrastructure and sustainability of self-management applications in Dutch cancer care.

Introduction: Chronic cancer‐related fatigue (CCRF) is a common symptom among patients. Current therapies target the patient alone, while evidence suggests that targeting the dyad might be more beneficial. Method: Using a mixed methods design, we conducted two studies that together aimed to provide more insight into the needs, benefits, barriers and preferences regarding a couples therapy for CCRF. In a qualitative study, we conducted focus groups and semi‐structured interviews with a purposive sample of 10 patients and 10 partners with experience of CCRF care, followed by thematic analysis. In a subsequent quantitative study, a convenience sample of patients ( n = 172) and partners ( n = 55) completed an online survey developed based on the qualitative findings. Results: In the qualitative study, both patients and partners expressed that a couples therapy could help them. Perceived benefits included empowerment of partners to support patients and improved couples communication. In the online survey, the need for a dyadic approach to CCRF therapy was confirmed by both patients (39%) and partners (91%). The benefits reported by most patients and partners were that partners could get attention for their own problems related to the patients’ cancer and fatigue (patients: 72%, partners: 86%) and receive advice on coping with fatigue (66% and 90%, respectively). Participants in both studies identified barriers, such as a fear of burdening partners with a couples therapy (50%). Partner involvement was considered desirable for most therapy elements (e.g., psychoeducation, contact with the therapist, exercises and relapse prevention). Yet, individual preferences varied widely. Conclusion: Results of both studies support the potential acceptability of a couples therapy for CCRF among patients and partners. Based on divergent preferences, we determined that a couples therapy must provide flexibility regarding the degree, intensity and type of partner involvement. Dyadic psychoeducation can be used as a solid starting point to manage expectations and get relief from perceived barriers.

<b>Introduction:</b> Anxiety and depression are associated with fatigue and common in patients with sarcoidosis. In a RCT we showed that online mindfulness-based cognitive therapy (eMBCT) improved fatigue in patients with sarcoidosis. Here we report the effect of eMBCT on psychological wellbeing. <b>Methods:</b> We included patients with stable sarcoidosis and fatigue in this RCT. The intervention group underwent a 12-week eMBCT program. Patients completed the Hospital Anxiety and Depression Scale (HADS) and Freiburg Mindfulness Inventory (FMI) at baseline and 12 weeks. HADS scores range from 0-21, a score &gt;7 indicates anxiety/depression. Differences were tested with t-tests. <b>Results:</b> 81 patients (34 intervention, 47 control) completed HADS and FMI at baseline and 12 weeks. At baseline, the presence of anxiety was 52% (mean 8.0±4.0) and depression 51% (mean 7.8±4.3), and similar for both groups. In the intervention group there was a clinically significant improvement in anxiety (meanΔ-2.1±3.7, p=0.002) and depression (Δ-2.3±3.7, p=0.001)(Fig 1). Between-group difference in change after 12 weeks was 1.8±0.7 (p=0.016) for anxiety, 1.6±0.7 (p=0.033) for depression, and 3.1±1.4 (p=0.033) for mindfulness. <b>Conclusion:</b> This RCT showed that eMBCT improved anxiety, depression, and mindfulness in patients with sarcoidosis-associated fatigue. eMBCT is an effective intervention and can easily be implemented in clinical care.

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Approximately 25% of cancer patients suffer from chronic cancer-related fatigue (CCRF), which is a complex, multifactorial condition. While there are evidence-based interventions, it remains unclear what treatment works best for the individual patient. Psychological network models can offer a schematic representation of interrelations among fatigue and protective and perpetuating factors for the individual patient. We explored whether feedback based on these individual fatigue networks can help personalize psychological care for CCRF. A 34-year old woman with CCRF was referred to our mental healthcare institute for psycho-oncology. During the waitlist period, she filled out an experience sampling app for 101 days, including five daily assessments of fatigue, pain, mood, activity and fatigue coping. The interplay between items was visualized in network graphs at the moment-level and day-level, which were discussed with the patient. For example, acceptance of fatigue in the past three hours was associated with less hopelessness and less fatigue in the following moment. At the day-level, acceptance was also being associated with less fatigue, less hopelessness, a better mood, and more motivation to do things. The patient recognized these patterns and explained how unexpected waves of fatigue can make her feel hopeless. This started a dialogue on how cultivating acceptance could potentially help her handle the fatigue. The patient would discuss this with her therapist. Feedback based on individual fatigue networks can provide direct insight into how one copes with CCRF and subsequently offer directions for treatment. Further research is needed in order to implement this in clinical practice.

Fear of cancer recurrence (FCR) is a common consequence of surviving cancer; therefore, easily accessible self-help training could help many cancer survivors deal with FCR at low costs. The CAncer REcurrence Self-help Training (CAREST) trial evaluates the effectiveness of an online-tailored self-help training on the basis of evidence-based cognitive behavioral therapy principles in breast cancer survivors. Also, possible predictors for benefitting from the online self-help training were examined. This multicenter randomized controlled trial included 262 female breast cancer survivors, randomly assigned to either online self-help training (n=130) or care as usual (CAU; n=132). Participants completed questionnaires at baseline (T0), 3months (T1; after intervention), and 9months (T2). The primary outcome was FCR (Fear of Cancer Recurrence Inventory Severity subscale). Both effectiveness and predictors were analyzed with latent growth curve modeling (LGCM) according to the intention-to-treat principle. LGCM showed no differences between the average latent slope in both groups (χ21 =.23, P=.63), suggesting that the treatments did not differ in their change in FCR over time. Moreover, no differences were found in the effects of the predictors on the latent slope in both groups (χ21 =.12, P=.73), suggesting that no significant predictors were found for the effect of the intervention on FCR. There was no effect of the CBT-based online self-help training "Less fear after cancer" in the current study. Therefore, we recommend adding professional support to online interventions for FCR.

Esse artigo apresenta o livro de 1 Macabeus como uma história de luta e esperança, em busca de liberdade e da retomada da terra, mostrando seu contexto e a importância desse momento histórico para a formação da identidade judaica. Por isso, é um livro inspirador de lutas pela liberdade e a vida, resistindo à opressão e às injustiças.

Background Computer-based cognitive rehabilitation is used to improve cognitive functioning after stroke. However, knowledge on adherence rates of stroke patients is limited.Objective To describe stroke patients’ adherence with a brain training program using two frequencies of health professionals’ supervision.Methods This study is part of a randomized controlled trial comparing the effect of the brain training program (600 min playtime with weekly supervision) with a passive intervention in patients with self-perceived cognitive impairments after stroke. Patients randomized to the control condition were offered the brain training after the trial and received supervision twice (vs weekly in intervention group). Adherence was determined using data from the study website. Logistic regression analyses were used to examine the impact of supervision on adherence.Results 53 patients allocated to the intervention group (group S8; 64% male, mean age 59) and 52 patients who were offered the intervention after the trial (group S2; 59% male, mean age 59) started the brain training. The median playtime was 562 min (range 63–1264) in group S8 vs. 193 min (range 27–2162) in group S2 (p < 0.001, Mann Whitney U).Conclusions The overall adherence of stroke patients with a brain training was low and there are some implications that systematic, regular interaction with a supervisor can increase training adherence of stroke patients with a restitution-focused intervention performed at home.

Measures of spirituality often contain the dimension existential well-being (EWB). However, EWB has been found to overlap with emotional and psychological well-being. Using the Spiritual Attitude and Involvement List (SAIL), we have further investigated the overlap between aspects of spirituality and of well-being among patients with cancer, by determining a) the divergent validity of the subscales of the SAIL compared with a well-being questionnaire and b) the differences in their associations to changes in pain and fatigue, and the occurrence of negative life events. Our findings suggest that a sense of trust that one is able to cope with difficulties of life belongs to the realm of well-being, instead of spirituality. Other aspects, such as a sense of meaning in life, seem more similar to spirituality than to well-being. These results can bring researchers a step further toward constructing "pure" spirituality and well-being measures, which will allow them to investigate the (causal) relationship between these constructs.