Personalized surveillance and aftercare for non-metastasized breast cancer: the NABOR study protocol of a multiple interrupted time series design.

BACKGROUND: Follow-up of curatively treated primary breast cancer patients consists of surveillance and aftercare and is currently mostly the same for all patients. A more personalized approach, based on patients' individual risk of recurrence and personal needs and preferences, may reduce patient burden and reduce (healthcare) costs. The NABOR study will examine the (cost-)effectiveness of personalized surveillance (PSP) and personalized aftercare plans (PAP) on patient-reported cancer worry, self-rated and overall quality of life and (cost-)effectiveness. METHODS: A prospective multicenter multiple interrupted time series (MITs) design is being used. In this design, 10 participating hospitals will be observed for a period of eighteen months, while they -stepwise- will transit from care as usual to PSPs and PAPs. The PSP contains decisions on the surveillance trajectory based on individual risks and needs, assessed with the 'Breast Cancer Surveillance Decision Aid' including the INFLUENCE prediction tool. The PAP contains decisions on the aftercare trajectory based on individual needs and preferences and available care resources, which decision-making is supported by a patient decision aid. Patients are non-metastasized female primary breast cancer patients (N = 1040) who are curatively treated and start follow-up care. Patient reported outcomes will be measured at five points in time during two years of follow-up care (starting about one year after treatment and every six months thereafter). In addition, data on diagnostics and hospital visits from patients' Electronical Health Records (EHR) will be gathered. Primary outcomes are patient-reported cancer worry (Cancer Worry Scale) and overall quality of life (as assessed with EQ-VAS score). Secondary outcomes include health care costs and resource use, health-related quality of life (as measured with EQ5D-5L/SF-12/EORTC-QLQ-C30), risk perception, shared decision-making, patient satisfaction, societal participation, and cost-effectiveness. Next, the uptake and appreciation of personalized plans and patients' experiences of their decision-making process will be evaluated. DISCUSSION: This study will contribute to insight in the (cost-)effectiveness of personalized follow-up care and contributes to development of uniform evidence-based guidelines, stimulating sustainable implementation of personalized surveillance and aftercare plans. TRIAL REGISTRATION: Study sponsor: ZonMw. Retrospectively registered at ClinicalTrials.gov (2023), ID: NCT05975437.

Relations between recurrence risk perceptions and fear of cancer recurrence in breast cancer survivors.

PURPOSE: This study aimed to: (1) determine the accuracy of Dutch breast cancer survivors' estimations of the locoregional recurrence risk (LRR); (2) examine which variables influence (the accuracy of) risk estimations, and risk appraisals; and (3) investigate the influence of the objective LRR risk (estimated using the INFLUENCE-nomogram), risk estimations and risk appraisals on fear of cancer recurrence (FCR). Findings of this study will inform clinicians on risk communication and can improve communication about FCR. METHODS: In a cross-sectional survey among 258 breast cancer survivors, women's recurrence risk estimations (in odds) and risk appraisals (in high/low), FCR, demographics and illness perceptions, about one year after surgery were measured and compared to the objective risk for LRRs estimated using the INFLUENCE-nomogram. RESULTS: Half of the women (54%) accurately estimated their LRR risk, 34% underestimated and 13% overestimated their risk. Risk estimations and risk appraisals were only moderately positively correlated (r = 0.58). Higher risk appraisals were associated with radiotherapy (r = 0.18) and having weaker cure beliefs (r = - 0.19). Younger age was associated with overestimation of risk (r = - 0.23). Recurrence risk estimations and risk appraisals were associated with more FCR (r = 0.29, r = 0.39). In regression, only risk appraisal contributed significantly to FCR. CONCLUSION: Although women were fairly accurate in recurrence risk estimations, it remains difficult to predict over- or underestimation. Recurrence risk estimations and risk appraisal are two different concepts which are both associated with FCR and should therefore be addressed in patient-provider communication.

Life review in groups? An explorative analysis of social processes that facilitate or hinder the effectiveness of life review.

OBJECTIVES: Life review can be implemented within a group as well as on an individual level. There have been few discussions about which the format is most effective. This study investigates the social aspects of a life-review group intervention from the perspective of the client within the context of a large, randomized controlled trial. METHOD: This was an exploratory study using a qualitative methodology. We conducted semi-structured interviews to explore how participants felt about the benefits and barriers of receiving life review in a group. Transcripts of the interviews were analyzed using inductive analysis. RESULTS: The social processes of life review in a group included experiencing a sense of belonging, feeling accepted, finding good company, disclosing oneself, learning to express oneself, finding recognition, realizing that others have problems too, being more successful at coping than others, learning from others, and being able to help others. Negative processes were less often mentioned and included having difficulties with sharing in a group, finding no recognition, and anxiety caused by the prospect of finding no recognition. These social processes can be divided into three categories: first, having a good atmosphere in the group; second, disclosure to peers; and third, relating to others. CONCLUSION: Our results reveal a variety of social processes that may facilitate the effects of life-review therapy. Future research, however, is needed to further examine the importance of these social processes and their effects on depression.

Cancer patients' experiences with and perceived outcomes of yoga: results from focus groups.

PURPOSE: Yoga is a "mind-body" exercise, a combination of physical poses with breathing and meditation, and may have beneficial effects on physical and psychosocial symptoms. We aimed to explore cancer patients' motives for practicing yoga, experiences of practicing yoga, and perceived physical and psychosocial outcomes. METHODS: Participants (n = 45) following yoga classes for cancer patients were asked to participate in focus group interviews, of whom 29 participated. The focus groups (n = 5) were audio taped with prior consent and transcribed verbatim. Data were analyzed by two coders and independently coded into key issues and themes. RESULTS: Mean age of the participants was 53.8 (SD 10.8) years, of whom 25 were women, and 18 were diagnosed with breast cancer. Motives for participation in yoga were relaxation, the will to be physically active, the wish to pay more attention to one's body, coping with psychosocial symptoms, contributing to their cancer rehabilitation process, and combing physical and mental processes. Main physical and psychosocial experiences of yoga mentioned by patients were regaining body awareness, raising attention to the inner self, learning how to relax, enjoyment, and finding recognition and understanding. Increased physical fitness and function, mental strength and resilience, increased coping, being more relaxed, and happiness were frequently mentioned experiences of patients. CONCLUSIONS: Patients with different types of cancer perceived several benefits on physical and psychosocial outcomes by practicing yoga. Therefore, yoga can be a valuable form of supportive care for cancer patients.

Breast cancer follow-up: from the perspective of health professionals and patients.

Increased breast cancer incidence and better survival have raised the number of patients requiring follow-up care. Despite guidelines, there is controversy about appropriate breast cancer follow-up. Therefore, semi-structured interviews were conducted in two hospitals with 23 patients and 18 health professionals (HPs) in order to explore opinions and preferences about the purpose, the duration and frequency of breast cancer follow-up and which examinations should be done, by whom. The transcripts were inductively analysed and coded into pre-identified themes. Patients were followed more intensively than guidelines recommend. HPs mentioned three major reasons; patient preferences, each discipline wanting to observe the patient, and financial incentives. For patients and HPs the most important purpose of follow-up was early detection of new malignancies. A highly valued aspect of follow-up mentioned by HPs was the psychosocial support, which was rarely mentioned by patients. Patient's expectations about the benefits of follow-up and additional examinations were sometimes unrealistic. Patients and HPs were positive about nurse practitioner-led follow-up, but less positive about general practitioner-led follow-up. Important barriers to current guideline adherence were revealed and should be taken into account by implementing new individualised guidelines. Furthermore, patients should be better informed about the benefits of follow-up to prevent unrealistic expectations.

Compassion-based interventions for people with long-term physical conditions: a mixed methods systematic review.

OBJECTIVE: Compassion-based interventions show promise in enhancing well-being and reducing distress, but little is known about their applications for people with long-term physical conditions. This study explores compassion-based interventions for this population: what are their differing elements (content, structure, tailoring, use of technology), feasibility and acceptability, effects and experienced benefits? DESIGN: A mixed-methods systematic review was conducted. Four bibliographic databases were searched without study design restrictions. Meta-synthesis was used to integrate quantitative results of effects and qualitative results of experienced benefits. RESULTS: Twenty studies met the inclusion criteria. Most studies targeted people with cancer or persistent pain. Interventions were either comprehensive with 6-12 face-to-face sessions, or brief based on a single compassion exercise. Feasibility and accessibility were highly rated by participants. Amongst a plethora of outcomes, reductions in depression and anxiety were the most common findings. Our qualitative synthesis yielded experienced benefits of (1) acceptance of the condition; (2) improved emotion regulation skills; (3) reduced feelings of isolation. There was minimal overlap between quantitative and qualitative outcomes. CONCLUSION: While the field is still in its infancy, this review highlights the potential benefits of compassion-based interventions for people with long-term physical conditions and discusses recommendations for further intervention research and development.

Participation in online patient support groups endorses patients' empowerment.

OBJECTIVE: Although much has been expected of the empowering effect of taking part in online patient support groups, there is no direct evidence thus far for the effects of participation on patient empowerment. Hence our exploring to what extent patients feel empowered by their participation in online support groups, and which processes that occur in these groups are related to the empowering outcomes. METHODS: An online questionnaire was completed by 528 individuals who were active in online groups for patients with breast cancer, fibromyalgia and arthritis. RESULTS: The respondents felt empowered in several ways by their participation. The empowering outcomes that were experienced to the strongest degree were 'being better informed' and 'enhanced social well-being'. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups. CONCLUSION: This study indicates that participation in online support groups can make a valuable contribution to the empowerment of patients. PRACTICE IMPLICATIONS: Health care providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.

Women's opinions about attending for breast cancer screening: stability of cognitive determinants during three rounds of screening.

OBJECTIVES: To examine the stability of beliefs and intentions towards repeat attendance at breast cancer screening, using the Theory of Planned Behaviour. The aims of the study were to examine whether and how cognitions changed in the course of the programme, and whether intentions that were assessed proximally were better predictors of behaviour than those assessed distally. DESIGN AND METHODS: A total of 2,657 women filled out a baseline questionnaire (T(1)), 2 months after being invited for an initial mammogram in the Dutch Breast Cancer Screening Programme. Actual attendance data in the second and third screening rounds were subsequently collected and follow-up questionnaires were sent to parts of the sample at four points in time: shortly before (T(2)) and after (T(3)) the second screening round, and shortly before (T(4)) and after (T(5)) the third screening round. RESULTS: Only minor changes in beliefs and intentions were found. In the assessments shortly before screening, women were somewhat less positive about attending than in the assessments shortly after screening. Throughout the course of the programme, women's opinions about attending remained positive. In fact, women became somewhat more convinced that they were vulnerable to getting breast cancer, and that participating in screening was beneficial to them. Actual attendance in subsequent rounds of screening was higher than expected. Proximal beliefs and intentions were only slightly more predictive of actual behaviour than distal beliefs. CONCLUSIONS: In organized breast cancer screening, beliefs and intentions remain positive and rather stable. Although our results should be interpreted with caution, due to little variation in behaviour, they suggest that the gap between intentions and behaviour could not be substantially reduced by proximal assessment of determinants.

Monitoring women's experiences during three rounds of breast cancer screening: results from a longitudinal study.

OBJECTIVES: (a) To monitor experiences of women during three successive rounds of breast screening; (b) to examine the impact of previous experiences (obtained either immediately after the latest mammogram or shortly before the subsequent one) on reattendance; and (c) to examine which factors are associated with the experience of pain and distress during screening. SETTING: The Dutch Breast Cancer Screening Programme METHODS: 2657 women completed a baseline measurement (response rate 67%) about 8 weeks after they had been invited for an initial mammogram (T(1)). Actual participation data of these women in the second and third rounds of screening were collected. Follow up questionnaires were sent to subgroups of the sample at different times: shortly before the second screening (T(2); response rate 86%), shortly after the second screening (T(3); response rate 85%), shortly before the third screening (T(4); response rate 80%), and shortly after the third screening (T(5); response rate 78%). RESULTS: Most women were satisfied with the first screening round and remained positive about subsequent screens. Although pain and anxiety were not uncommon, only a few (10%-15%) experienced moderate or severe levels of distress or pain. Experiences were relatively stable: women who experienced pain in the first screen were more likely to experience pain in subsequent screens (r values from 0.39 to 0.50). Fear of breast cancer was associated with increased distress related to mammography and, to a lesser extent, with increased pain during the mammography. Evidence was found for a relief effect: women were more positive about their previous screen when asked shortly after this screen, than when asked just before the subsequent one. Previous experiences (obtained either proximally or distally) were only slightly predictive for future attendance. CONCLUSION: Experiences during mammography are fairly stable. Negative experiences were generally not a reason to drop out of the programme.