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Simple Summary: This study examined the use of the Breast Cancer Surveillance Decision Aid (BCS-PtDA) in eight Dutch hospitals. This PtDA supports information provision (including information about personalized recurrence risks) and decision-making about post-treatment surveillance. Health care professionals (HCPs) acknowledged that the tool helped make patients aware of their options but felt it increased their workload without clear benefits. While the tool was effective in presenting choices to patients, deliberation about the options was scarce. The main challenges were related to the extra time required and HCPs' perception of the tool's value. Risk communication was deemed generally adequate. The study suggests that, while the PtDA offers benefits, better integration and communication strategies are needed to enhance shared decision-making processes. In conclusion, the implementation of the BCS-PtDA led to choices being offered to patients. However, there is room for improvement in information provision and the application of shared decision-making. Background: To improve Shared decision-making (SDM) regarding personalized post-treatment surveillance, the Breast Cancer Surveillance Decision Aid (BCS-PtDA), integrating personalized risk information, was developed and implemented in eight hospitals. The aim of this mixed-methods study was to (1) assess the implementation and participation rates, (2) identify facilitators and barriers for use by health care professionals (HCPs), (3) quantify the observed level of SDM, and (4) evaluate risk communication and SDM application in consultations. Methods: Implementation and participation rates and patients' BCS-PtDA use were calculated using hospital registry data and BCS-PtDA log data. HCPs' perspective on facilitators and barriers were collected using the MIDI framework. Observed SDM levels in consultation transcripts were quantified using the OPTION-5 scale. Thematic analysis was performed to assess consultation content. Results: The average PtDA implementation and participation rates were, respectively, 26% and 61%. HCPs reported that the PtDA supported choice awareness. Reported barriers for implementation were mainly increased workload and a lack of perceived benefits. The consultation analysis (n = 64) showed patients were offered a choice, but deliberation was lacking. Risk communication was generally adequate. Discussion: When the BCS-PtDA was used, patients were clearly given a choice regarding their post-treatment surveillance, but information provision and SDM application can be improved. [ABSTRACT FROM AUTHOR]

Introduction: Value‐based healthcare (VBHC) focusses on increasing value for patients. Hospitals aim to implement VBHC via value improvement (VI) teams for medical conditions. To determine the patient's perspective on value, collective patient participation is important in these teams. We therefore evaluated the current state of patient participation in VI teams and share lessons learned. Methods: This mixed‐methods study was conducted at seven collaborating hospitals in the Netherlands. A questionnaire (the public and patient engagement evaluation tool) was tailored to the study's context, completed by VI team members (n = 147 from 76 different VI teams) and analysed with descriptive statistics. In addition, 30 semistructured interviews were held with VI team members and analysed through thematic analysis. Data were collected between February 2022 and January 2023 and were triangulated by mapping the quantitative results to the interview themes. Results: Thirty‐eight of the 76 included VI teams reported using a form of patient participation. Many respondents (71%) indicated a lack of a clear strategy and goal for patient participation. Multiple VI team members believed that specific knowledge and skills are required for patients to participate in a VI team, but this led to concerns regarding the representativeness of participating patients. Furthermore, while patients indicated that they experienced some level of hierarchy, they also stated that they did not feel restricted hereby. Lastly, patients were satisfied with their participation and felt like equal VI team members (100%), but they did mention a lack of feedback from the VI team on their input. Conclusion: The results imply the lack of full implementation of patient participation within VI teams. Guidelines should be developed that provide information on how to include a representative group of patients, which methods to use, how to evaluate the impact of patient participation, and how to give feedback to participating patients. Patient and Public Contribution: Two patient advisors were part of the research team and attended the research team meetings. They were involved as research partners in all phases of the study, including drafting the protocol (e.g., drafting interview guides and selecting the measurement instrument), interpreting the results and writing this article. [ABSTRACT FROM AUTHOR]

Introduction: Guidelines on chronic kidney disease (CKD) recommend that nephrologists use clinical prediction models (CPMs). However, the actual use of CPMs seems limited in clinical practice. We conducted a national survey study to evaluate: 1) to what extent CPMs are used in Dutch CKD practice, 2) patients' and nephrologists' needs and preferences regarding predictions in CKD, and 3) determinants that may affect the adoption of CPMs in clinical practice. Methods: We conducted semi-structured interviews with CKD patients to inform the development of two online surveys; one for CKD patients and one for nephrologists. Survey participants were recruited through the Dutch Kidney Patient Association and the Dutch Federation of Nephrology. Results: A total of 126 patients and 50 nephrologists responded to the surveys. Most patients (89%) reported they had discussed predictions with their nephrologists. They most frequently discussed predictions regarded CKD progression: when they were expected to need kidney replacement therapy (KRT) (n = 81), and how rapidly their kidney function was expected to decline (n = 68). Half of the nephrologists (52%) reported to use CPMs in clinical practice, in particular CPMs predicting the risk of cardiovascular disease. Almost all nephrologists (98%) reported discussing expected CKD trajectories with their patients; even those that did not use CPMs (42%). The majority of patients (61%) and nephrologists (84%) chose a CPM predicting when patients would need KRT in the future as the most important prediction. However, a small portion of patients indicated they did not want to be informed on predictions regarding CKD progression at all (10–15%). Nephrologists not using CPMs (42%) reported they did not know CPMs they could use or felt that they had insufficient knowledge regarding CPMs. According to the nephrologists, the most important determinants for the adoption of CPMs in clinical practice were: 1) understandability for patients, 2) integration as standard of care, 3) the clinical relevance. Conclusion: Even though the majority of patients in Dutch CKD practice reported discussing predictions with their nephrologists, CPMs are infrequently used for this purpose. Both patients and nephrologists considered a CPM predicting CKD progression most important to discuss. Increasing awareness about existing CPMs that predict CKD progression may result in increased adoption in clinical practice. When using CPMs regarding CKD progression, nephrologists should ask whether patients want to hear predictions beforehand, since individual patients' preferences vary. [ABSTRACT FROM AUTHOR]

Objective: Breast cancer patients for whom less intensive surveillance is sufficient can be identified based on the risk for locoregional recurrences (LRRs). This study explores health care professionals' (HCPs) perspectives on less intensive surveillance, preferences for shared decision‐making (SDM) about surveillance and perspectives on the use of patients' estimated personal risk for LRRs in decision‐making about surveillance. Methods: We conducted semi‐structured interviews with 21 HCPs providing follow‐up care for breast cancer patients in seven Dutch teaching hospitals (Santeon hospitals). Results: HCPs were predominantly positive about less intensive surveillance for women with a low risk for recurrences. They mentioned important prerequisites such as clearly defined surveillance schedules based on risk categories, information provision and communication support for patients and HCPs. Most HCPs supported SDM about surveillance and were positive about using patients' estimated personal risk for LRRs. HCPs specified prerequisites such as clear visualisation and explanation of risk information, attention for fear of cancer recurrence (FCR) and defined surveillance schedules for specific risk groups. Conclusion: Mentioned prerequisites for less intensive surveillance need to be accounted for. Information needs and existing misconceptions need to be addressed. Outcome information regarding risks for LRRs and FCR can enrich the SDM process about surveillance. [ABSTRACT FROM AUTHOR]

Background: Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients' risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-making, that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice.Methods: The International Patient Decision Aids Standards (IPDAS) development process model was complemented with a user-centred and convergent mixed-methods approach. Rapid prototyping was used to develop the PtDA with a multidisciplinary steering group in an iterative process of co-creation. The results of an exploratory evidence review and a needs-assessment among patients, caregivers, and clinicians were used to develop the PtDA. Seven Dutch teaching hospitals and two national Dutch outcome registries provided real-world data on selected outcomes for all kidney failure treatment modalities. Alpha and beta testing were performed to assess the prototype and finalise development. An implementation strategy was developed to guide implementation of the PtDA in clinical practice.Results: The 'Kidney Failure Decision Aid' consists of three components designed to help patients and clinicians engage in SDM: 1) a paper hand-out sheet, 2) an interactive website, and 3) a personal summary sheet. A 'patients-like-me' infographic was developed to visualise survival probabilities for each treatment modality on the website. Other treatment outcomes were incorporated as event rates (e.g. hospitalisation rates) or explained in text (e.g. the flexibility of each treatment modality). No major revisions were needed after alpha and beta testing. During beta testing, some patients ignored the survival probabilities because they considered these too confronting. Nonetheless, patients agreed that every patient has the right to choose whether they want to view this information. Patients and clinicians believed that the PtDA would help patients make informed decisions, and that it would support values- and preferences-based decision-making. Implementation of the PtDA has started in October 2020.Conclusions: The 'Kidney Failure Decision Aid' was designed to facilitate SDM in clinical practice and contains real-world outcome information on all kidney failure treatment modalities. It is currently being investigated for its effects on SDM in a clinical trial. [ABSTRACT FROM AUTHOR]

Objective: Follow‐up after breast cancer can be divided into surveillance and aftercare. It remains unclear how follow‐up can ideally be organised from the perspective of health care professionals (HCPs). The aim of this study was to gain insight in the organisation of follow‐up in seven Dutch teaching hospitals and to identify best practices and opportunities for improvement of breast cancer (all stages) follow‐up as proposed by HCPs. Methods: Semi‐structured in‐depth group interviews were performed, one in each of the participating hospitals, with in total 16 HCPs and 2 patient advocates. To describe the organisation of follow‐up, transcripts were analysed using a deductive approach. Best practices and opportunities were derived using an inductive approach. Results: Variation was found in the organisation of aftercare, especially in timing, frequency, and disciplines of involved HCPs. Less variation was observed for surveillance, which was guided by the national guideline. Best practices focused on case management and adequate collaboration between HCPs of different disciplines. Mentioned opportunities were improving the structured monitoring of patients' needs and a comprehensive guideline for organisation and content of aftercare. Conclusions: Variation in follow‐up existed between hospitals. Shared decision‐making (SDM) about surveillance is desirable to ensure that surveillance matches the patient needs, preferences, and personal risk for recurrences. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the effectiveness of two versions (personal or automated feedback) of a psychological Web-based self-help intervention targeting partners of cancer patients. The intervention was based on acceptance and commitment therapy (ACT) and self-compassion training. Participants' adherence and their satisfaction were also studied. Methods: Two hundred three partners of patients with heterogeneous entities of cancer were randomized into three conditions: personal feedback (PF) (n = 67), automated feedback (AF) (n = 70), or waiting list (WL) control (n = 66). Participants completed measures at baseline (T0) and post-intervention (T1; 3 months after baseline) to assess psychological distress (HADS; primary outcome), positive mental health, caregiver strain, general health (secondary outcomes), posttraumatic growth, resilience, self-compassion, psychological flexibility, sense of mastery, and relational communication style (process measures). Participants in the two experimental conditions also completed these measures at follow-up (T2; 6 months after baseline). Results: There was no significant difference in change in psychological distress, positive mental health, caregiver strain and general health from T0 to T1 for either of the experimental conditions compared with the WL-condition. However, when compared to a WL-condition, the PF-condition was effective in increasing psychological flexibility (effect size d = 0.49) and resilience (d = 0.12) and decreasing overprotection (d = 0.25), and the AF-condition was effective in reducing overprotection (d = 0.36) and improving protective buffering (d = 0.36). At follow-up, the PF-condition was more effective than the AF-condition for improving mental health (d = 0.36), psychological flexibility (d = 0.60), mastery (d = 0.48), and protective buffering (d = 0.24). Participants positively appreciated the intervention and 69% participants were adherent. Conclusion: This study demonstrates that a Web-based intervention based on ACT and self-compassion training with automated or personal feedback does not seem to improve psychological distress; however, it may have the potential to support partners of cancer patients to cope with the difficult situation they are facing. The condition with personal feedback seemed to be more beneficial. [ABSTRACT FROM AUTHOR]

PURPOSE: To develop and evaluate a tool for patients with stage IV non–small-cell lung cancer and their thoracic oncologists (TOs) that provides insight into real-world effectiveness of systemic treatments to support informed clinical decision making in the palliative setting. METHODS: A participatory design approach was used to acquire insights from patients and TOs into preferences regarding the content and design of the web-based tool. Implementation was investigated by means of an adoption and usage rate. The appreciation of the tool was evaluated through a telephone survey with patients and a questionnaire for TOs. RESULTS: From clinical data of 2,989 patients with stage IV non–small-cell lung cancer diagnosed in one of the Santeon hospitals, an interface was developed to show treatments plus both real-world outcomes and clinical trial results after selecting patient characteristics (patients like me). This prototype of the tool was finalized after discussion in a focus group with four TOs and semi-structured interviews with six patients. The tool was implemented and used by TOs in three of six Santeon hospitals (50% adoption rate). The tool was used in 48 patients (29% usage rate), of which 17 participated in the telephone survey. Ten TOs responded to the questionnaire. The responses varied from positive reactions on the clear overview of treatment outcomes to statements that the tool rarely changed treatment decisions. Overall, the majority of patients and TOs scored the tool as of added value (71% and 83%, respectively). CONCLUSION: Our real-world data tool in metastatic lung cancer was appreciated in clinical practice by both patients and TOs. However, the efficacy of the implementation can be improved. [ABSTRACT FROM AUTHOR]

Uptake of decision aids (DAs) in daily routine is low, resulting in limited knowledge about successful DA implementation at a large scale. We assessed implementation rates after multi-regional implementation of three different prostate cancer (PCa) treatment DAs and patient-perceived barriers and facilitators to use a DA. Thirty-three hospitals implemented one out of the three DAs in routine care. Implementation rates for each DA were calculated per hospital. After deciding about PCa treatment, patients (n = 1033) completed a survey on pre-formulated barriers and facilitators to use a DA. Overall DA implementation was 40%. For each DA alike, implementation within hospitals varied from incidental (< 10% of eligible patients receiving a DA) to high rates of implementation (> 80%). All three DAs were evaluated positively by patients, although concise and paper DAs yielded higher satisfaction scores compared with an elaborate online DA. Patients were most satisfied when they received the DA within a week after diagnosis. Pre-formulated barriers to DA usage were experienced by less than 10% of the patients, and most patients confirmed the facilitators. Many patients received a DA during treatment counseling, although a wide variation in uptake across hospitals was observed for each DA. Most patients were satisfied with the DA they received. Sustained implementation of DAs in clinical routine requires further encouragement and attention. [ABSTRACT FROM AUTHOR]

For the treatment choice of localized prostate cancer, effective patient decision aids have been developed. The implementation of decision aids in routine care, however, lags behind. Main known barriers are lack of confidence in the tool, lack of training on its use, lack of resources and lack of time. A new implementation strategy addresses these barriers. Using this implementation strategy, the implementation rate of a decision aid was measured in eight hospitals and questionnaires were filled out by 24 care providers and 255 patients. The average implementation rate was 60 per cent (range 31%–100%). Hardly any barriers remained for care providers. Patients who did not use the decision aid appeared to be more unwilling than unable to use the decision aid. By addressing known barriers, that is, informing care providers on the effectiveness of the decision aid, providing instructions on its use, embedding it in the existing workflow and making it available free of charge, a successful implementation of a prostate cancer decision aid was reached. [ABSTRACT FROM AUTHOR]

Objectives: To investigate among patients treated with a total laryngectomy (TL) (1) Internet-use and Internet use to search for information on health and cancer (content); (2) which patients are most likely to use the Internet in general, for health-related and cancer-related purposes; (3) which other types of eHealth (community, communication, care) are used; and (4) preferences towards future use.Methods: Patient members of the Dutch TL patient society were asked to complete a questionnaire on Internet use, health-related and cancer-related Internet use, types of eHealth, preferences towards future use, socio-demographics, clinical factors, and quality of life (QOL). Factors associated with Internet use and health-related and cancer-related Internet use were investigated using stepwise logistic regression analysis.Results: In total, 279 TL patients participated, of whom 68% used the Internet. Of these, 63% used the Internet to search for information on health and 49% on cancer. Younger and higher educated TL patients and those with better QOL used the Internet more often. Patients with worse QOL searched more often for health-related information. Younger patients and those with shorter time since TL searched more often for cancer-related information. The current use of eHealth for communication, community, and care purposes among Internet users was limited (range, 2 to 15%). Many were interested in using these types of eHealth in the future (range, 21 to 72%).Conclusion: The majority used the Internet, especially to search for information on health and cancer, but only few for communication, community, or care purposes. Many were interested in future use. [ABSTRACT FROM AUTHOR]

Implementation of patient's decision aids in routine clinical care is generally low. This study evaluated uptake and usage of a novel Dutch web-based prostate cancer treatment decision aid within the Prostate Cancer Patient Centered Care trial. From an estimated total patient sample of 1006 patients, 351 received a decision aid (35% implementation rate; hospital ranges 16%–84%). After receipt of the decision aid, most patients accessed the decision aid, utilized most functions, although not completely, and discussed the decision aid summary in a subsequent consultation with their care provider. Including nurses for dissemination of decision aids seemed to positively affect decision aid uptake. Once received, patients seemed able to use the decision aid and engage in shared decision-making as intended; however, decision aid uptake and complete usage of all decision aid components should be further improved. Prior to the diagnosis consultation, handing out of the decision aid should be prepared. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to investigate among female cancer patients their perceived social support from health care professionals (HCPs), family and friends, and public media, and their perspective on care concerning body changes.Methods: A study-specific questionnaire was completed by 235 female cancer patients. Descriptive statistics were used to describe social support and perspective on care. Logistic regression analyses were used to investigate the associations between social support and sociodemographic and clinical factors, psychosocial impact, and importance of appearance.Results: More than half of the patients received sufficient support from HCPs (54%) and family and friends (55%), and a third from the media (32%). Higher educated patients and those who found appearance not important during illness perceived lower support from HCPs. Patients without a partner, and those with a surgical treatment only, perceived lower support from family and friends. Patients who were older, higher educated, without a partner, and those who found appearance not important during illness perceived lower support from the media. In total, 15-50% of the patients received sufficient care for different domains of body changes. Patients expressed the highest need for psychological support (28%) and nutrition (28%).Conclusions: Half of the female cancer patients reported to receive sufficient social support concerning body changes after cancer. Perceived support depended on age, education, relationship status, and treatment modality. The need for more care was moderate. [ABSTRACT FROM AUTHOR]

Background: Meaning-centered group psychotherapy for cancer survivors (MCGP-CS) improves meaning, psychological well-being, and mental adjustment to cancer and reduces psychological distress. This randomized controlled trial was conducted to investigate the cost-utility of MCGP-CS compared with supportive group psychotherapy (SGP) and care-as-usual (CAU).Methods: In total, 170 patients were randomized to MCGP-CS, SGP, or CAU. Intervention costs, direct medical and nonmedical costs, productivity losses, and health-related quality of life were measured until 6 months follow-up, using the TIC-P, PRODISQ, data from the hospital information system, and the EQ-5D. The cost-utility was calculated by comparing mean cumulative costs and quality-adjusted life years (QALYs).Results: Mean total costs ranged from €4492 (MCGP-CS) to €5304 (CAU). Mean QALYs ranged .507 (CAU) to .540 (MCGP-CS). MCGP-CS had a probability of 74% to be both less costly and more effective than CAU, and 49% compared with SGP. Sensitivity analyses showed these findings are robust. If society is willing to pay €0 for one gained QALY, MCGP-CS has a 78% probability of being cost-effective compared with CAU. This increases to 85% and 92% at willingness-to-pay thresholds of €10 000 and €30 000, which are commonly accepted thresholds.Conclusions: MCGP-CS is highly likely a cost-effective intervention, meaning that there is a positive balance between the costs and gains of MCGP-CS, in comparison with SGP and CAU. [ABSTRACT FROM AUTHOR]

Purpose: Life review therapy combined with memory specificity training (LRT-MST) is effective in cancer patients in palliative care, but the effect size is moderate. The aim of this qualitative study was to obtain more in-depth knowledge on motivation to start with LRT-MST, experiences with LRT-MST, and perceived outcomes of LRT-MST.Methods: Semi-structured interviews were conducted with 20 cancer patients in palliative care who participated in a randomized controlled trial investigating the effect of LRT-MST. All interviews were digitally recorded and transcribed verbatim. Data were analyzed by means of thematic analysis independently by two coders and coded into key issues and themes.Results: Patients started LRT-MST for intrinsic (e.g., potential benefit for personal well-being) and extrinsic reasons (e.g., potential benefit for future patients). Patients indicated mainly positive experiences with the intervention. They appreciated sharing their memories and regaining memories with a specific focus on retrieving positive memories. Some disliked the fact that negative memories could not be addressed. Most patients perceived positive outcomes of the intervention belonging to the overarching themes "ego-integrity" and "psychological well-being" in the here and now, as well as in the nearby future (including end-of-life).Conclusions: LRT-MST is of added value as a psychological intervention in palliative care. This study provided in-depth insight into reasons to start the intervention, and the experiences and outcomes, which are important to further tailor LRT-MST and for development or improvement of other psychological interventions targeting cancer patients in palliative care. [ABSTRACT FROM AUTHOR]

Purpose: A web-based self-management application "Oncokompas" was developed to monitor health-related quality of life and to support cancer survivors in finding and obtaining optimal supportive care. Access to this application is provided via a healthcare professional (HCP). The aim of this study was to explore the adoption and implementation of Oncokompas in routine clinical practice and to obtain insights in potentially relevant determinants of implementation.Methods: A pilot study was carried out among 65 hospitals throughout The Netherlands. HCPs filled out a questionnaire on the implementation of Oncokompas in their organization, consisting of study specific items and items based on the Measurement Instrument for Determinants of Innovations (MIDI). The MIDI comprises 29 determinants in four domains that predict the use of innovations: the innovation itself (Oncokompas), the user (HCP), the organization (hospital), and socio-political context.Results: In total, 20/65 eligible hospitals agreed to implement Oncokompas (adoption rate 31%). In these 20 adopting hospitals, the majority of the responding HCPs (72/205) in this study (44/61) indicated their patients were offered access to Oncokompas (implementation rate 72%). Comparing those HCPs who did and did not implement Oncokompas, the groups differed significantly on innovation-related (procedural clarity, complexity) and user-related determinants (importance of outcome expectations, professional obligation, social support, and self-efficacy).Conclusions: During this 1-year study, nationwide adoption rate of Oncokompas was at 31%, and subsequent implementation rate was at 72%. The results of this study contribute to further optimize interventions and strategies to adopt and implement (online) self-management applications in cancer care. [ABSTRACT FROM AUTHOR]

Introduction: The EORTC QLQ-CR29 is a patient-reported outcome measure to evaluate health-related quality of life among colorectal cancer patients in research and clinical practice. The aim of this systematic review was to investigate whether the initial positive results regarding the measurement properties of the QLQ-CR29 are confirmed in subsequent studies.Methods: A systematic search of Embase, Medline, PsycINFO, and Web of Science was conducted to identify studies investigating the measurement properties of the QLQ-CR29 published up to January 2019. For the 11 included studies, data were extracted, methodological quality was assessed, results were synthesized, and evidence was graded according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology on the measurement properties: structural validity, internal consistency, reliability, measurement error, construct validity (hypothesis testing, including known-group comparison, convergent and divergent validity), cross-cultural validity, and responsiveness.Results: Internal consistency was rated as "sufficient," with low evidence. Reliability was rated as "insufficient," with moderate evidence. Construct validity (hypothesis testing; known-group comparison, convergent and divergent validity) was rated as "inconsistent," with moderate evidence. Structural validity, measurement error, and responsiveness were rated as "indeterminate" and could therefore not be graded.Conclusion: This review indicates that current evidence supporting the measurement properties of the QLQ-CR29 is limited. Additionally, better quality research is needed, taking into account the COSMIN methodology. [ABSTRACT FROM AUTHOR]

Oncokompas, cancer survivors monitor their quality of life by completing patient reported outcome measures (PROMs), followed by personalized feedback, self-care advice, and supportive care options to stimulate patient activation. The aim of this study was to investigate feasibility and pretest-posttest differences of Oncokompas including a newly developed breast cancer (BC) module among BC survivors. Material and methods: A pretest-posttest design was used. Feasibility was investigated by means of adoption, usage, and satisfaction rates. Several socio-demographic and clinical factors, and healthrelated quality of life (HRQOL) were explored that might be associated with patient satisfaction. Barriers and facilitators of Oncokompas feasibility were investigated by evaluating nurse consultation reports. Differences in patient activation (Patient Activation Measure) and patient-physician interaction (Perceived Efficacy in Patient-Physician Interactions) before and after Oncokompas use were investigated. Results: In total, 101 BC survivors participated. Oncokompas had an adoption rate of 75%, a usage rate of 75-84%, a mean satisfaction score of 6.9 (range 0-10) and a Net Promoter Score (NPS) of -36 (range -100-100) (N¼68). The BC module had a mean satisfaction score of 7.6. BC survivors who received surgery including chemotherapy and/or radiotherapy were significantly more satisfied with Oncokompas than BC survivors with surgery alone (p¼.013). Six facilitators and 10 barriers of Oncokompas feasibility were identified. After using Oncokompas, BC survivors scored significantly higher on patient activation (p¼.007; r¼.24), but not on patient-physician interaction (p¼.75). Conclusion: Oncokompas including a BC module is considered feasible, but needs further optimization to increase user satisfaction. This study shows the value of tailoring eHealth applications for cancer survivors to their specific tumor type. Oncokompas including the BC module seems to improve patient activation among BC survivors. [ABSTRACT FROM AUTHOR]

Introduction: Body image is acknowledged as an important aspect of health-related quality of life in cancer patients. The Body Image Scale (BIS) is a patient-reported outcome measure (PROM) to evaluate body image in cancer patients. The aim of this study was to systematically review measurement properties of the BIS among cancer patients.Methods: A search in Embase, MEDLINE, PsycINFO, and Web of Science was performed to identify studies that investigated measurement properties of the BIS (Prospero ID 42017057237). Study quality was assessed (excellent, good, fair, poor), and data were extracted and analyzed according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology on structural validity, internal consistency, reliability, measurement error, hypothesis testing for construct validity, and responsiveness. Evidence was categorized into sufficient, insufficient, inconsistent, or indeterminate.Results: Nine studies were included. Evidence was sufficient for structural validity (one factor solution), internal consistency (α = 0.86-0.96), and reliability (r > 0.70); indeterminate for measurement error (information on minimal important change lacked) and responsiveness (increasing body image disturbance in only one study); and inconsistent for hypothesis testing (conflicting results). Quality of the evidence was moderate to low. No studies reported on cross-cultural validity.Conclusion: The BIS is a PROM with good structural validity, internal consistency, and test-retest reliability, but good quality studies on the other measurement properties are needed to optimize evidence. It is recommended to include a wider variety of cancer diagnoses and treatment modalities in these future studies. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to assess patient-reported levels of physical activity (PA) and its associations with health-related quality of life (HRQoL) adjusted for important demographic, lifestyle-related, and clinical factors, among head and neck (HNC) survivors.Methods: This cross-sectional study included 116 HNC survivors. PA was assessed with the Physical Activity Scale for the Elderly (PASE) and HRQoL with the EORTC-QLQ-C30 and EORTC-HN35. Associations were studied using univariable and multivariable regression analyses.Results: Median PASE score was 100.3 (interquartile range 65.1;170.8) of which 54% were household, 34% leisure-time, and 12% occupational activities. Younger HNC survivors had higher levels of PA. Higher PA was significantly associated with higher global QoL (p < 0.05). Findings for physical function, role function, social function, fatigue, and pain were in line, but not statistically significant (0.05 ≤ p < 0.10).Conclusions: Among HNC survivors, a large proportion of PA consists of household activities. Younger HNC survivors had higher PA levels, and higher PA levels were associated with higher HRQoL. [ABSTRACT FROM AUTHOR]

This study examined partners of cancer patients intention to use a web-based psychological intervention, their preferences regarding its preconditions, functionalities and topics, and factors related to their intention. One hundred and sixty-eight partners completed a questionnaire about these aspects. Forty-eight percent of the partners would (maybe) make use of a web-based intervention. Partners who intended to participate were significantly younger, used the Internet more often, and perceived more caregiver strain. Most partners preferred an intervention that takes less than 1 hour/week, lasts five weeks or more, and contains information and peer support. Half of the partners would like to receive online guidance. [ABSTRACT FROM PUBLISHER]

Background: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. Methods: Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. Results: Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. Conclusions: Nurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers. [ABSTRACT FROM AUTHOR]

Introduction Patient decision aids (PDAs) have been developed to help patients make an informed choice for a treatment option. Despite proven benefits, structural implementation falls short of expectations. The present study aims to assess the effectiveness and cost-utility of the PDA among newly diagnosed patients with localised prostate cancer and their partners, alongside implementation of the PDA in routine care. Methods/analysis A stepped-wedge cluster randomised trial will be conducted. The PDA will be sequentially implemented in 18 hospitals in the Netherlands, over a period of 24 months. Every 3 or 6 months, a new cluster of hospitals will switch from usual care to care including a PDA. The primary outcome measure is decisional conflict experienced by the patient. Secondary outcomes comprise the patient's quality of life, treatment preferences, role in the decision making, expectations of treatment, knowledge, need for supportive care and decision regret. Furthermore, societal cost-utility will be valued. Other outcome measures considered are the partner's treatment preferences, experienced participation to decision making, quality of life, communication between patient, partner and health care professional, and the effect of prostate cancer on the relationship, social contacts and their role as caregiver. Patients and partners receiving the PDA will also be asked about their satisfaction with the PDA. Baseline assessment takes place after the treatment choice and before the start of a treatment, with follow-up assessments at 3, 6 and 12 months following the end of treatment or the day after deciding on active surveillance. Outcome measures on implementation include the implementation rate (defined as the proportion of all eligible patients who will receive a PDA) and a questionnaire for health care professionals on determinants of implementing an innovation. Ethics and dissemination This study will be conducted in accordance with local laws and regulations of the Medical Ethics Committee of VU University Medical Center, Amsterdam, The Netherlands. The results from this stepped-wedge trial will be presented at scientific meetings and published in peer-reviewed journals. Trial registration Nederlands Trial Register NTR TC5177, registration date: May 28th 2015. Pre-results. [ABSTRACT FROM AUTHOR]

Background: As colon cancer is increasingly becoming a chronic illness with a broad range of symptoms, there is a need for individually tailored care for these patients.Objective: To investigate patients' opinions about GP involvement in survivorship care and the use of eHealth applications, such as Oncokompas2.0, to support self-management. Oncokompas2.0 is an interactive website that monitors quality of life via participant-reported outcomes and provides feedback and personalized supportive care.Methods: We conducted a qualitative study using semi-structured interviews with patients diagnosed with stages I-III colon cancer treated with curative intent. Twenty participants (nine men, age range 49-86 years) were recruited in five Dutch hospitals by purposive sampling. Thematic data analysis was done by two coders.Results: Possible benefits of greater GP involvement include better accessibility of care and additional guidance. Participants considered an increased workload for the already busy GP as a disadvantage. Requirements for greater GP involvement were assurance of sufficient knowledge and expertise of the GP and easy access to secondary care. Most participants expected that Oncokompas2.0 would increase awareness of symptoms and concerns and provide more insight into support possibilities. Reservations mentioned were the expected loss of personal contact with health professionals and the feasibility of implementation in the total patient population.Conclusion: Colon cancer patients see some benefit of greater GP involvement and the use of Oncokompas2.0 to improve survivorship care. Our study results support initiatives to further explore GP-led survivorship care and the implementation of eHealth. [ABSTRACT FROM AUTHOR]

Background: Cancer survivors have to deal with a wide range of physical symptoms, psychological, social and existential concerns, and lifestyle issues related to cancer and its treatment. Therefore, it is essential that they have access to optimal supportive care services. The eHealth self-management application Oncokompas was developed to support cancer survivors with where they need to turn to for advice and guidance, as well as to increase their knowledge on the availability of optimal support. A randomised controlled trial will be conducted to assess the efficacy, cost-utility and reach of Oncokompas as an eHealth self-management application compared with care as usual among cancer survivors.Methods/design: Adult cancer survivors diagnosed with breast, colorectal or head and neck cancer or lymphoma who are at 3 months to 5 years since curative treatment will be included. In total, 544 cancer survivors will be randomly assigned to the intervention group or a wait-list control group. The primary outcome measure is patient activation. Secondary outcome measures include self-efficacy, personal control, perceived patient-physician interaction, need for supportive care, mental adjustment to cancer and health-related quality of life. Furthermore, cost-utility outcomes will be assessed. Reach is defined as the percentage of cancer survivors who get access to Oncokompas within the context of this trial. Questionnaires will be administered at baseline, post-intervention and at 3- and 6-month follow-up.Discussion: In this study, we will evaluate the efficacy and cost-utility of Oncokompas among cancer survivors, as well as the reach of Oncokompas. These are essential first steps in the translation of research into practice and contribute to sustainable adoption, implementation and maintenance of an evidence-based Oncokompas.Trial Registration: Netherlands Trial Register identifier: NTR5774 . Registered on 8 March 2016. [ABSTRACT FROM AUTHOR]

Background: Recent results of a randomized clinical trial showed that a guided self-help intervention (based on problem-solving therapy) targeting psychological distress among head and neck cancer and lung cancer patients is effective. This study qualitatively explored motivation to start, experiences with and perceived outcomes of this intervention.Methods: Data were collected from semi-structured interviews of 16 patients. All interviews were audio-recorded and transcribed verbatim. Data were analyzed individually by two coders and coded into key issues and themes.Results: Patients participated in the intervention for intrinsic (e.g. to help oneself) and for extrinsic reasons (e.g. being asked by a care professional or to help improve health care). Participants indicated positive and negative experiences with the intervention. Several participants appreciated participating as being a pleasant way to work on oneself, while others described participating as too confrontational. Some expressed their disappointment as they felt the intervention had brought them nothing or indicated that they felt worse temporarily, but most participants perceived positive outcomes of the intervention (e.g. feeling less distressed and having learned what matters in life).Conclusions: Cancer patients have various reasons to start a guided self-help intervention. Participants appreciated the guided self-help as intervention to address psychological distress, but there were also concerns. Most participants reported the intervention to be beneficial. The results suggest the need to identify patients who might benefit most from guided self-help targeting psychological distress and that interventions should be further tailored to individual cancer patients' requirements. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study is to assess the psychometric properties of the Dutch version of the 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34) and the newly developed module for head and neck cancer (HNC) patients (SCNS-HNC).Methods: HNC patients were included from two cross-sectional studies. Content validity of the SCNS-HNC was analysed by examining redundancy and completeness of items. Factor structure was assessed using confirmatory and exploratory factor analyses. Cronbach's alpha, Spearman's correlation, Mann-Whitney U test, Kruskall-Wallis and intraclass correlation coefficients (ICC) were used to assess internal consistency, construct validity and test-retest reliability.Results: Content validity of the SCNS-HNC was good, although some HNC topics were missing. For the SCNS-SF34, a four-factor structure was found, namely physical and daily living, psychological, sexuality and health system and information and patient support (alpha = .79 to .95). For the SCNS-HNC, a two-factor structure was found, namely HNC-specific functioning and lifestyle (alpha = .89 and .60). Respectively, 96 and 89 % of the hypothesised correlations between the SCNS-SF34 or SCNS-HNC and other patient-reported outcome measures were found; 57 and 67 % also showed the hypothesised magnitude of correlation. The SCNS-SF34 domains discriminated between treatment procedure (physical and daily living p = .02 and psychological p = .01) and time since treatment (health system, information and patient support p = .02). Test-retest reliability of SCNS-SF34 domains and HNC-specific functioning domain was above .70 (ICC = .74 to .83), and ICC = .67 for the lifestyle domain. Floor effects ranged from 21.1 to 70.9 %.Conclusions: The SCNS-SF34 and SCNS-HNC are valid and reliable instruments to evaluate the need for supportive care among (Dutch) HNC patients. [ABSTRACT FROM AUTHOR]

Background: Total laryngectomy with or without adjuvant (chemo)radiation often induces speech, swallowing and neck and shoulder problems. Speech, swallowing and shoulder exercises may prevent or diminish these problems. The aim of the present paper is to describe the study, which is designed to investigate the effectiveness and cost-utility of a guided self-help exercise program built into the application "In Tune without Cords" among patients treated with total laryngectomy.Methods/design: Patients, up to 5 years earlier treated with total laryngectomy with or without (chemo)radiation will be recruited for participation in this study. Patients willing to participate will be randomized to the intervention or control group (1:1). Patients in the intervention group will be provided access to a guided self-help exercise program and a self-care education program built into the application "In Tune without Cords". Patients in the control group will only be provided access to the self-care education program. The primary outcome is the difference in swallowing quality (SWAL-QOL) between the intervention and control group. Secondary outcome measures address speech problems (SHI), shoulder disability (SDQ), quality of life (EORTC QLQ-C30, QLQ-H&N35 and EQ-5D), direct and indirect costs (adjusted iMCQ and iPCQ measures) and self-management (PAM). Patients will be asked to complete these outcome measures at baseline, immediately after the intervention or control period (i.e. at 3 months follow-up) and at 6 months follow-up.Discussion: This randomized controlled trial will provide knowledge on the effectiveness of a guided self-help exercise program for patients treated with total laryngectomy. In addition, information on the value for money of such an exercise program will be provided. If this guided self-help program is (cost)effective for patients treated with total laryngectomy, the next step will be to implement this exercise program in current clinical practice.Trial Registration: NTR5255 Protocol version 4 date September 2015. [ABSTRACT FROM AUTHOR]

Purpose: Glioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients' and caregivers' attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options.Methods: In total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.Results: Advantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments.Conclusions: Informal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to explore the perspectives of general practitioners (GPs) regarding their current and future role in survivorship care of patients with colon cancer, and to assess their perspectives on patients' self-management capacities and the value of the eHealth application Oncokompas2.0 used by patients. Setting: GPs from the central part of the Netherlands were interviewed at their location of preference. Participants: 20 GPs participated (10 men, 10 women, age range 34-65 years, median age 49.5 years). The median years of experience as a GP was 14.5 years (range 3-34 years). Results: GPs indicated attempting to keep in contact with patients after colon cancer treatment and mentioned being aware of symptoms of recurrent disease. Most participants would have liked to be more involved and expected to be able to provide survivorship care of colon cancer. Requirements mentioned were agreements with secondary care and a protocol. GPs considered Oncokompas2.0, which stimulates patients to structure their own survivorship care, as a useful additional tool for a specific group of patients (ie, young and highly-educated patients). Conclusions: Based on the perspectives of the GPs, survivorship care of colon cancer in primary care is deemed feasible and the use of an eHealth application such as Oncokompas2.0 is expected to benefit specific groups of patients after colon cancer treatment. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to investigate the feasibility of an online self-care education program supporting early rehabilitation of patients after total laryngectomy (TLPs) and factors associated with satisfaction.Methods: Health care professionals (HCPs) were invited to participate and to recruit TLPs. TLPs were informed on the self-care education program "In Tune without Cords" (ITwC) after which they gained access. A study specific survey was used (at baseline T0 and postintervention T1) on TLPs' uptake. Usage, satisfaction (general impression, willingness to use, user-friendliness, satisfaction with self-care advice and strategies, Net Promoter Score (NPS)), sociodemographic, and clinical factors were analyzed.Results: HCPs of 6 out of 9 centers (67% uptake rate) agreed to participate and recruited TLPs. In total, 55 of 75 TLPs returned informed consent and the baseline T0 survey and were provided access to ITwC (73% uptake rate). Thirty-eight of these 55 TLPs used ITwC and completed the T1 survey (69% usage rate). Most (66%) TLPs were satisfied (i.e., score ≥7 (scale 1-10) on 4 survey items) with the self-care education program (mean score 7.2, SD 1.1). NPS was positive (+5). Satisfaction with the self-care education program was significantly associated with (higher) educational level and health literacy skills (P = .004, P = .038, respectively). No significant association was found with gender, age, marital status, employment status, Internet use, Internet literacy, treatment modality, time since total laryngectomy, and quality of life.Conclusion: The online self-care education program ITwC supporting early rehabilitation was feasible in clinical practice. In general, TLPs were satisfied with the program. [ABSTRACT FROM AUTHOR]

Aim: To develop a Web-based self-care program for patients after total laryngectomy according to a participatory design approach. Methods: We conducted a needs assessment with laryngectomees (n = 9) and their partners (n = 3) by means of a focus group interview. In 4 focus group sessions, a requirement plan was formulated by a team of health care professionals (n = 10) and translated into a prototype. An e-health application was built including illustrated information on functional changes after total laryngectomy as well as video demonstrations of skills and exercises. Usability of the prototype was tested by end users (n = 4) and expert users (n = 10). Interviews were held to elicit the intention to use and the desired implementation strategy. Results: Six main self-care topics were identified: (1) nutrition, (2) tracheostomy care, (3) voice prosthesis care, (4) speech rehabilitation, (5) smell rehabilitation, and (6) mobility of head, neck, and shoulder muscles. Expert users expressed concerns regarding tailored exercises, indicated a positive intent to implement the intervention in routine care, and expressed a need for guidance when implementing the intervention. End users and expert users appreciated the content completeness and multimedia-based information built into the application. Conclusion: The participatory design is a valuable approach to develop a self-care program to help meet users' needs. [ABSTRACT FROM AUTHOR]

Background: It is expected that in 2020 more than 17,000 cases of colorectal cancer will be diagnosed in The Netherlands. To date, patients are included in a surgeon-led follow-up programme whose main focus is recurrence detection. However, patients often experience multiple physical and psychosocial problems. Currently, these problems are not always encountered. More care by a generalist is suggested as a solution. Furthermore, patients prefer to undergo rehabilitation in their own environment and to be more involved in their own health care. eHealth applications might enhance this. Oncokompas(2.0) is an online self-management application which facilitates access to supportive care. This study aims to evaluate primary care follow-up and aftercare in comparison with secondary care follow-up and aftercare for patients with colon cancer. Second, the added value of Oncokompas(2.0) to care will be assessed.Methods/design: This is a multi-centre 2 × 2 factorial randomised controlled trial with a calculated sample size of 300 patients. Patients with stage I, II, or III colon carcinoma are eligible. Patients will be randomly assigned in four groups: (1) usual follow-up visits and aftercare provided in secondary care, (2) usual follow-up visits and aftercare provided in secondary care with additional use of Oncokompas(2.0), (3) follow-up and aftercare in primary care, and (4) follow-up and aftercare in primary care with additional use of Oncokompas(2.0). The primary outcome is quality of life. Secondary outcomes include physical outcomes, psychosocial outcomes, number of investigations, referrals and related communication between secondary and primary care, (time of) recurrence detection and protocol adherence, attention to preventive care, self-management of patients, patient satisfaction, and preference of care at the end of the trial. Data collection will be done by questionnaires and extractions from electronic medical records.Discussion: The results of this study will provide evidence, which has been scarce to date, on prominent general practitioner involvement in care for colon cancer patients after initial treatment. Also, it evaluates the efficacy of an eHealth application to enhance patient empowerment.Dutch Trial Register: NTR4860 (registered on 2 October 2014). [ABSTRACT FROM AUTHOR]

Background: It is expected that in 2020 more than 17,000 cases of colorectal cancer will be diagnosed in The Netherlands. To date, patients are included in a surgeon-led follow-up programme whose main focus is recurrence detection. However, patients often experience multiple physical and psychosocial problems. Currently, these problems are not always encountered. More care by a generalist is suggested as a solution. Furthermore, patients prefer to undergo rehabilitation in their own environment and to be more involved in their own health care. eHealth applications might enhance this. Oncokompas2.0 is an online self-management application which facilitates access to supportive care. This study aims to evaluate primary care follow-up and aftercare in comparison with secondary care follow-up and aftercare for patients with colon cancer. Second, the added value of Oncokompas2.0 to care will be assessed. Methods/Design: This is a multi-centre 2 × 2 factorial randomised controlled trial with a calculated sample size of 300 patients. Patients with stage I, II, or III colon carcinoma are eligible. Patients will be randomly assigned in four groups: (1) usual follow-up visits and aftercare provided in secondary care, (2) usual follow-up visits and aftercare provided in secondary care with additional use of Oncokompas2.0, (3) follow-up and aftercare in primary care, and (4) follow-up and aftercare in primary care with additional use of Oncokompas2.0. The primary outcome is quality of life. Secondary outcomes include physical outcomes, psychosocial outcomes, number of investigations, referrals and related communication between secondary and primary care, (time of) recurrence detection and protocol adherence, attention to preventive care, self-management of patients, patient satisfaction, and preference of care at the end of the trial. Data collection will be done by questionnaires and extractions from electronic medical records. Discussion: The results of this study will provide evidence, which has been scarce to date, on prominent general practitioner involvement in care for colon cancer patients after initial treatment. Also, it evaluates the efficacy of an eHealth application to enhance patient empowerment. [ABSTRACT FROM AUTHOR]

Background Meaning-focused coping may be at the core of adequate adjustment to life after cancer. Cancer survivors who experience their life as meaningful are better adjusted, have better quality of life and psychological functioning. Meaning-Centered Group Psychotherapy for Cancer Survivors (MCGP-CS) was designed to help patients to sustain or enhance a sense of meaning and purpose in their lives. The aim of the proposed study is to evaluate the effectiveness and cost-effectiveness of MCGP-CS. Methods/design Survivors diagnosed with cancer in the last 5 years and treated with curative intent, are recruited via several hospitals in the Netherlands. After screening, 168 survivors are randomly assigned to one of the three study arms: 1. Meaning-Centered Group Psychotherapy (MCGP-CS) 2. Supportive group psychotherapy (SGP) 3. Care as usual (CAU). Baseline assessment takes place before randomisation, with follow up assessments post-intervention and at 3, 6 and 12 months follow-up. Primary outcome is meaning making (PMP, PTGI, SPWB). Secondary outcome measures address quality of life (EORTC-30), anxiety and depression (HADS), hopelessness (BHS), optimism (LOT-R), adjustment to cancer (MAC), and costs (TIC-P, EQ-5D, PRODISQ). Discussion Meaning-focused coping is key to adjustment to life after cancer, however, there is a lack of evidence based psychological interventions in this area. Many cancer survivors experience feelings of loneliness and alienation, and have a need for peer support, therefore a group method in particular, can be beneficial for sustaining or enhancing a sense of meaning. If this MCGP-CS is effective for cancer survivors, it can be implemented in the practice of psycho- oncology care. Trial registration NTR3571 [ABSTRACT FROM AUTHOR]

Background: Confrontation with a life-threatening disease like cancer can evoke existential distress, which can trigger a search for meaning in people after having survived this disease. Methods: In an effort to gain more insight in the meaning making process, we conducted four focus groups with 23 cancer survivors on this topic. Participants responded to questions about experienced meaning making, perceived changes in meaning making after cancer and the perceived need for help in this area. Results: Most frequently mentioned meaning making themes were relationships and experiences. We found that, in general, cancer survivors experienced enhanced meaning after cancer through relationships, experiences, resilience, goal-orientation and leaving a legacy. Some participants, however, also said to have (also) experienced a loss of meaning in their lives through experiences, social roles, relationships and uncertainties about the future. Conclusions: The results indicated that there is a group of cancer survivors that has succeeded in meaning making efforts, and experienced sometimes even more meaning in life than before diagnosis, while there is also a considerable group of survivors that struggled with meaning making and has an unmet need for help with that. The results of this study contribute to develop a meaning centered intervention for cancer survivors. [ABSTRACT FROM AUTHOR]

We studied the success and success factors of online support groups (OSGs) for patients, and the motives and goals of people who start such groups. We interviewed 23 webmasters of OSGs for patients with breast cancer, fibromyalgia and arthritis. The majority were women (n = 20) and most were patients (n = 21). Analysis of the interviews revealed that webmasters had altruistic and intrinsic motives for initiating an online support group. They defined success as the fulfilment of the goals they had in mind when they initiated their groups. To be able to make a group successful, decisions about its organization and management need to be coherent with these goals. Most webmasters stressed that promoting the group, keeping it alive and moderating the messages were vital success factors during the evolution stage. Management of the OSGs took up much of the webmasters' time and energy. On average webmasters were occupied with the group for 10-15 hours a week. Our study provides an overview of the pros and cons of differing decisions that have to be made when initiating an OSG. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore the percentage of Dutch patients using the Internet to search for information about their illness. In addition, we studied patients' usage of health-related Internet applications, such as online patient support groups. The final objective of this study was to explore which demographic, health and psychological characteristics are related to patients' health-related Internet use. In order to answer these research questions we sent a written questionnaire to a representative sample of patients with breast cancer, rheumatoid arthritis and fibromyalgia. The overall total response rate was 69% (N = 679). In total, 52% of the patients used the Internet to search for information about their illness. However, only 15% of the respondents had ever read along with an online patient support group. An even smaller proportion of the patients (4%) had send postings to such a group. Online communication with health professionals was not commonly practiced. A younger age, a higher education and employment appeared to be the only significant predictors of patients' health-related Internet use. Patients' health-related Internet use could not be predicted by health and psychological characteristics. Although, about half of the patients made use of the Internet for health-related reasons, mostly their health-related Internet use was restricted to seeking information about their illness. [ABSTRACT FROM AUTHOR]

Ever since the rise of online support groups it has been presumed that there is an empowering effect from patients' participating in these groups, despite a lack of evidence to back up this assumption. In this study we explored if, and in which ways, patients feel empowered by participation. Additionally, we studied which empowering and disempowering processes occur as a result of taking part in these groups. To accomplish this aim, we interviewed 32 participants of online support groups. This analysis revealed the following empowering processes: exchanging information, encountering emotional support, finding recognition, sharing experiences, helping others, and amusement. Disempowering processes were mentioned far less often. Empowering outcomes mentioned were being better informed; feeling confident in the relationship with their physician, their treatment, and their social environment; improved acceptance of the disease; increased optimism and control; enhanced self-esteem and social well-being; and collective action. This article demonstrates that participation in online support groups can make a valuable contribution to the emergence of empowered patients. [ABSTRACT FROM AUTHOR]