Kanker Nazorg Wijzer: Development and evaluation of a computer-tailored self-management intervention providing psychosocial support for cancer survivors

With advances in cancer detection and treatment and an aging population, the number ofcancer survivors has increased significantly over the past decade and will continue to do so.Many cancer survivors face a variety of difficulties and challenges following cancer treatment,such as anxiety, depression, fear of cancer recurrence, fatigue, pain, social relationship andintimacy issues, difficulties in returning to work, or lifestyle-related problems (e.g., unhealthydiet, lack of physical activity, smoking). These issues may negatively affect survivors’ qualityof life. Current guidelines propose that cancer survivors are mainly responsible for managingtheir health and well-being, and that healthcare professionals should encourage andsupport them in self-management. However, cancer survivors do not always feel confidentin managing their health: they do not always know what to expect after finishing cancertreatment, where to get help, or do not have sufficient skills to manage their problems.Providing an easily accessible tool stimulating self-management in managing life aftercancer treatment might therefore fill an important gap in cancer aftercare.The aim of this thesis was to develop and evaluate an easily accessible web-basedcomputer-tailored self-management intervention, the Kanker Nazorg Wijzer (Cancer AftercareGuide; KNW), aimed at supporting cancer survivors during life after cancer treatment. TheKNW was systematically developed using the Intervention Mapping protocol, which is atheory- and empirically-based approach for intervention development. The interventionis fully automated (i.e., there is no therapist support) and provides tailored informationand support on multiple domains: cancer-related fatigue, return to work, anxiety anddepression, social relationships and intimacy, physical activity, diet, and smoking cessation.It is assumed that by providing tailored support on dealing with issues experienced withinthese domains, quality of life will increase. The current thesis describes the systematicdevelopment of the KNW and evaluates the effectiveness of the intervention on quality oflife, anxiety, depression, and fatigue.Chapter 1 describes the importance and rationale of developing a web-basedcomputer-tailored self-management program for cancer survivors within the first yearafter cancer treatment. The chapter provides an overview of the problems cancer survivorsmay encounter during life after cancer treatment. A detailed description of cancer-relatedfatigue, anxiety, and depression and their impact on quality of life is provided. The chapterfurther describes cancer survivors’ role in managing these problems, and highlights theimportance of eHealth in supporting cancer survivors in self-management.Chapter 2 aims to identify cancer survivors’ most prominent information and supportneeds within the first year after primary treatment, and investigates whether the type ofexperienced needs varies among survivors’ demographic, disease-related, and psychosocialcharacteristics. The results show that cancer survivors experience a great variety of unmetinformation and support needs. Almost two in three survivors experience one or moreunmet needs. The most frequently reported unmet needs concerned receiving adequate emotional and social support, managing side effects or complications, dealing with fearof recurrence, receiving adequate cancer care and up-to-date information, and carryingout work. Unmet needs varied greatly among survivors’ characteristics. Higher age, higheducational level, participation in support programs, and higher levels of anxiety, depression,and negative adjustment style were associated with a higher number of unmet needs;being female, a longer time since last treatment, and a higher level of quality of life wereassociated with a lower number of unmet needs. The number of unmet needs also differedamong cancer type. These relationships differed per need domain. The results indicate thata general approach for information and support provision might not be efficient and that atailored approach focusing on a broad array of subjects is more suitable.Chapter 3 describes the systematic development of the KNW. The web-basedcomputer-tailored self-management intervention was developed using the InterventionMapping protocol, which describes a systematic, theory- and empirically-based approachfor intervention development. The KNW consists of eight modules, of which seven areself-management training modules. The training modules cover the topics return to work,fatigue, anxiety and depression, social relationships and intimacy issues, physical activity,diet, and smoking cessation. The eighth module provides general information and somebasic advice on the most common residual symptoms. To improve self-management skills,several evidence-based approaches were integrated into the intervention to change thebehavioral determinants: all training modules were structured according to the principlesof problem-solving therapy, elements of cognitive behavioral therapy were implemented inthe modules covering problems which have strong psychosocial components (i.e., fatigue,anxiety and depression, return to work, and social relationships and intimacy issues), andsocial cognitive and self-regulation theories were integrated into the modules coveringlifestyle behaviors (i.e., physical activity, diet, and smoking cessation). Since cancer survivorsexperience a great variety of unmet needs and experienced needs differ among patientcharacteristics (see also Chapter 2), a tailored approach was considered as a more efficientway of providing information within the intervention. By tailoring information to thesurvivors’ characteristics, the information is made more personally relevant, which facilitatesbehavioral change. The chapter further provides a detailed description of the scope andsequence of the intervention modules and other website elements. Finally, the evaluationplan for determining intervention effectiveness, a randomized controlled trial comparingan intervention group with a waiting list control group, is described.Chapter 4 provides a detailed description of how the participants in the interventiongroup used and appreciated the KNW intervention. One of the main components of theintervention was the tailored advice referring participants to the intervention modules thatbest suited the participants’ needs. The results showed that participants on average werereferred to three modules, indicating that the topics discussed in the KNW were highly relevant. In total, 86% of the participants visited at least one module. The most-visitedmodules were the modules discussing diet (58%) and fatigue (36%). Participants were morelikely to visit a module when they were advised to visit that module, indicating that thetailored advice worked well. The KNW in general, as well as the individual modules, werehighly appreciated. Higher perceived personal relevance of the KNW and its contents wasassociated with a higher appreciation of the KNW.Chapter 5 presents the short-term effectiveness of the KNW (i.e., 6 months from baseline;directly after intervention closure) on quality of life, anxiety, depression, and fatigue. Theresults showed that the KNW was effective in reducing depression and fatigue. That is,participants in the intervention group reported significantly lower levels of depressionand fatigue than participants in the control group after intervention closure. In addition,significant effects were found for emotional and social functioning (both are componentsof quality of life), with the intervention group reporting higher levels of emotional and socialfunctioning than the control group after intervention closure. Intention-to-treat analysesverified the results for depression and fatigue, but showed non-significant differences foremotional and social functioning. In-depth analysis aimed to provide insight into whethermodule use influenced these results. The results suggest that the effect for fatigue inparticular could be explained by participants who used the module covering fatigue.Chapter 6 provides insight into the long-term effectiveness of the KNW. It wasinvestigated whether the effects found in the short term (i.e., 6 months from baseline)remained in the long term (i.e., 12 months from baseline). In addition, the chapter aimsto provide insight into whether the short- and long-term effects differ among subgroupsof survivors. The results show that at 12 months from baseline, the intervention groupno longer differed from the control group in levels of emotional and social functioning,depression, and fatigue. The lack of maintenance of effect could be explained by the levelsof emotional and social functioning, depression, and fatigue within the intervention groupremaining fairly stable between 6 and 12 months after baseline, and the control groupslowly improving in these outcomes over the trial period. The subgroup analyses showedthat, in the short term, the intervention was only effective in improving social functioningfor men, reducing fatigue for participants aged 56 and younger, and reducing depressionfor participants who received chemotherapy with or without surgery. In the long term,educational level moderated the effect of social functioning.Chapter 7 provides insight into the working mechanisms of the KNW. It washypothesized that the KNW would increase problem-solving skills and perceived personalcontrol in managing cancer recovery at 3 months from baseline, which would result in areduction in depression and fatigue at 6 months from baseline. The outcomes depressionand fatigue were chosen, since the complete case analyses, as well as the intention-to-treatanalyses, in the short-term evaluation (Chapter 5) showed significant intervention effects in reducing these outcomes. The results of the mediation analyses showed that personalcontrol, but not problem-solving skills, partially mediated the intervention effect ofdepression (24%) and fatigue (40%). This mediation effect was not explained by a significantincrease of personal control in the intervention group, but by a significant decrease ofpersonal control in the control group, suggesting that the intervention helped to preventa decline in perceived personal control in managing cancer recovery. The results provideevidence for the relevance of addressing personal control in web-based interventions inorder to improve psychosocial well-being in early cancer survivors.Chapter 8 provides a summary and discussion of the main findings, reflects on thestrengths and limitations, and discusses the implications for practice and future research.Important strengths are the innovative nature of the intervention (e.g., providing tailoredinformation; addressing multiple problems; being developed for survivors of any type ofcancer), strong study design, long-term follow-up, high number of participants, low dropoutrate, and the use of advanced statistical techniques to evaluate the intervention’seffectiveness. Further, by means of process evaluation, effect evaluation of module use,subgroup analyses, and analyses of the working mechanisms, in-depth information wasretrieved concerning why and for whom the intervention is effective and whether theintervention worked as intended. Limitations include selective dropout and possibility ofselection bias. A disadvantage of the broad design of the intervention (e.g., addressingmultiple problems) was that we were not able to preselect on the baseline values ofthe health outcomes. The strengths and limitations should be taken into account wheninterpreting the results of the research project. Implications for future research includefurther specifying for whom the intervention is most effective, investigating how to optimizethe intervention to facilitate user engagement, and evaluating the cost-effectiveness of theintervention. The most important implication for practice is that the KNW might serve as animportant step in a stepped-care approach, since this easily accessible and low-intensityintervention is considered to be effective in maintaining personal control in cancer recoveryand to be effective in increasing cancer survivors’ well-being. While effect sizes were small,they can be considered as clinically relevant, since a large population of cancer survivorscan be reached with this intervention.To conclude, the thesis shows that the fully automated KNW intervention is an effectivetool in improving cancer survivors’ well-being. The KNW gave cancer survivors a head startin recovery after the end of cancer treatment. With the KNW being a relatively low-intensity,easily accessible, and low-cost tool, which has the potential to reach a large group of cancersurvivors, it is believed to be a relevant step in stepped care for needs assessment and initialsupport for the psychosocial problems that are often present after cancer treatment.