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OBJECTIVE: Kidney transplantation with a living donor has proved to be an effective solution for kidney patients on the waiting list for transplantation. Nevertheless, it may be difficult to find a living kidney donor. The purpose of this explorative study is to investigate how kidney transplant candidates may, or may not, find a living donor in the Netherlands. METHODS: We compared a group of 42 patients who did not find a living donor with a group of 42 patients who did, using semi-structured interviews. RESULTS: We found that, although almost all patients recognized the advantages of living kidney donation and were willing to accept the offer of a living kidney donor, many found it very difficult to ask a potential donor directly. This was true for both groups. CONCLUSION: Patients may gain from professional support to deal with this situation in ways that balance their medical needs and their personal relationships. PRACTICE IMPLICATIONS: Support programs should be developed to assist patients in developing strategies for discussing living kidney donation with potential donors. [ABSTRACT FROM AUTHOR]

Objectives: Posttraumatic stress disorder (PTSD) after exposure to multiple (childhood) trauma's is strongly associated with accelerated aging and high psychiatric and somatic comorbidity, influencing frailty and Quality of Life (QoL) in older adults. Eye Movement Desensitization therapy (EMDR) addresses psychological and physiologic symptoms stemming from adverse life events and therefore could influence frailty and QoL in older adults., Methods: We conducted a multi-center feasibility study (two psychiatric hospitals) in Dutch older outpatients (N = 24; ≥60 years) with PTSD. Participants received weekly EMDR-treatment during the course of the trial (3 months to a maximum of 9 months). Frailty (Groninger Frailty Indicator) and QoL (EuroQol 5D-3L), were assessed pre- and posttreatment., Results: A linear mixed-model approach showed significant reduction of frailty (F(1,23) = 9.019, p = .006) and improvement of QoL (F(1,23) = 13.787, p = .001). For both frailty and QoL, there was no significant influence of Clinician-Administered PTSD Scale (CAPS-5) pre-treatment score, therapy duration, and neither an interaction effect of therapy duration x CAPS-5 pre-treatment score., Conclusions: EMDR with older adults with PTSD showed a significant reduction of frailty and improvement of QoL. Randomized controlled studies are needed to more precisely study the impact of trauma-focused treatment in older adults on frailty and QoL and the implications this might have for lessening disease burden., Clinical Implications: Screening for PTSD in older frail adults is important to treat PTSD as a possible way to reduce frailty and improve QoL.

Background: Health agency refers to one's capacity to form health-related goals, experience control, and possess the means to pursue them. Low socioeconomic status (SES) is linked to impaired health agency and increased risk of adverse pregnancy outcomes, potentially due to a reduced tendency to seek care. Better healthcare availability may not improve their pregnancy outcomes, and therefore improved understanding of maternal health agency is paramount., Methods: Semi-structured interviews were conducted with 15 participants who either had children or desired to have them. Low SES was determined by neighborhood median income and educational attainment. A thematic content analyses was conducted., Results: Two themes emerged: 1) Origin and development of personal goals, and 2) Awareness and competence. Participant's goals stemmed from cultural norms, personal narratives, and intuition. Integrated goals were those participants valued highly, were aware of, and strived for. Four subthemes were identified in goal-awareness and competence. Internal conflict due to discrepancies between goals and behavior resulted in the need to balance the burdens and benefits of behavior change., Conclusion: Maternal health agency is a modifiable outcome dependent on goal-awareness and various factors. Impaired agency seemed to stem from lack of goal-awareness rather than an inability to meet established pillars.

Objectives: This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer., Methods: Seventeen couples participated. Semi-structured interviews were conducted on couples' joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale., Results: Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers., Conclusions: Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement., Practice Implications: Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Living donor liver transplantation (LDLT) is the best option for end-stage liver disease patients. Older potential donors are increasingly requesting donation. This study aims to systematically assess the differences in donor perioperative and postoperative complications, mortality, and quality of life (QoL) between younger and older living liver donors., Materials and Methods: Embase, Medline, and Cochrane were searched for studies published between 2002 and 2 June 2023. Donor complications, major complications, biliary complications, mortality, and QoL were systematically reviewed, including meta-analyses. Donors aged >50 years were considered older. The methodological quality of the studies was assessed using the Newcastle-Ottawa quality assessment Scale., Results: The search yielded 8320 studies, of which 17 were included. The risk ratio (RR) for complications in younger donors was 1.08 [0.90-1.31] ( P =0.41). RRs for major complications in younger donors were 0.98 [0.64, 1.48] and 0.89 [0.50, 1.57] using Clavien-Dindo ≥III and ≥IIIb as major complication. RR for biliary complications in younger donors was 1.59 [1.05-2.42] ( P =0.03). Mortality rate in younger donors was 47/13 238 (0.4%) and in older donors 13/989 (1.3%). Physical component summary (PCS) in younger donors was 51.87 and in older donors 51.29. Mental component summary (MCS) in younger donors was 52.93 and in older donors 55.40., Conclusion: Older donors do not have a higher complication or mortality rate than younger donors after LDLT. They may have a lower rate of biliary complications. Additionally, older donors have a similar QoL after LDLT. With careful selection, older donors can be included in screening programs for living liver donation to expand the donor pool., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

Objective: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer., Methods: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements., Results: Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed "continuing to do the same activities as done before the disease," "difficulty accepting the situation," "avoiding to think about the disease," and "living in the short term." Accommodative strategies involved "arranging practical matters," "thinking about the future," "doing what is feasible," "engaging in new activities," "accepting the situation," "seeking distraction," "living in the short term," and "focusing on what truly matters in life." The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies., Conclusion: When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances., (© 2024 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Objectives: Clear information and supportive care are necessary for oncology patients and their relatives to manage the disease (trajectory). Centres for information and support aim to address their needs by offering informal and non-medical formal services. This study evaluated whether the centres' services offered meet the needs of its visitors, and whether there is interest for these among oncology patients treated at affiliated hospitals., Methods: In this participatory action research, interviews were conducted among visitors of two centres (Patient Information Center Oncology (PATIO) and IntermeZZo) and among patients treated at the affiliated hospitals. Visitors were interviewed to share their experiences regarding the centres' services offered. Patients from the hospitals were interviewed about their interest in such support. Data were collected during three different periods and adjustments were made to the centres' services between measurements., Results: 111 (PATIO) and 123 visitors (IntermeZZo) were interviewed, and 189 and 149 patients at the respective hospitals. Reasons to visit PATIO/IntermeZZo were to relax (93.1%), seek professional advice (54.6%) and meet peers (36.3%). Visitors indicated that the visits met their needs (99.1%), citing the accessible support and the expertise in oncology. 20% of patients interviewed at the hospitals expressed interest in visiting PATIO/IntermeZZo. The majority of patients (89.6%) considered these centres an integral part of their treatment process. These findings were stable over time., Conclusions: Patients and their relatives highly value the services of hospital-affiliated centres for information and support. Future research should address how such centres best be integrated in the Dutch healthcare system., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Decision counseling (DC) is offered to enable patients to reflect on their treatment preferences and to think through the consequences of alternative treatment options. However, the timing of DC is debatable. In this study, patients who underwent DC at different times were interviewed about their experiences, specifically focusing on the timing of DC., Methods: Patients with locally advanced esophageal cancer eligible for participation in a prospective cohort study on active surveillance (SANO-2 study) were offered DC either before or after neoadjuvant chemoradiotherapy (nCRT). Structured interviews were conducted by phone 1 week after DC, and responses were analyzed using frequency counts for the answers to set response categories. The primary outcome was the preferred time to receive DC, while the secondary outcome was the overall experience of patients with DC., Results: Overall, 40 patients were offered DC between 2021 and 2023. Patients who had counseling before the start of nCRT (n = 20) were satisfied with the timing of DC. Of the 20 patients who had DC after nCRT, 6 would have preferred counseling at an earlier time point. Patients who had DC both before or after the completion of nCRT reflected positively on DC., Conclusion: It is recommended to introduce the option of DC as early as possible and discuss with the patient at which moment during the decision-making process they prefer to discuss all treatment options more extensively., (© 2023. The Author(s).)

Objectives: Around 30% of patients with cancer suffer from psychosocial problems requiring formal care; however, these problems are often not identified. Support consultants may play a role in identifying these problems. This study investigates the feasibility of using validated screening instruments to assist support consultants in identifying psychosocial problems., Methods: Prospective observational study focusing on patients visiting support consultants at hospital-affiliated centres for information and support. The feasibility of using screening instruments was assessed based on the percentage of patients willing to participate. For these patients, possible psychosocial problems were objectified, and referral to formal care was assessed., Results: Out of 227 eligible patients at IntermeZZo, 48 participated (21.1%). At PATIO, over 141 consultations took place and 27 patients participated. Main reason for non-participation was that patients did not feel such a need. The majority showed elevated scores, indicating possible psychosocial problems and around half were referred. Respecting the individual needs of patients and offering them with what benefits them is crucial, including screening instruments does not match their needs nor did support consultants feel it was appropriate in certain cases., Conclusion: Given the low percentage of questionnaires administered, it does not seem feasible to systematically administer them to patients visiting support consultants., Competing Interests: Competing interests: The authors are employees of the Erasmus MC. The authors declare no conflicts of interest., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Literature points towards the potential benefits of the application of Eye Movement and Desensitization Processing (EMDR)-therapy for patients in the medical setting, with cancer and pain being among the domains it is applied to. The field of applying EMDR-therapy for patients treated in the medical setting has evolved to such an extent that it may be challenging to get a comprehensive overview. Objective: This systematic literature review aims to evaluate the use and effectiveness of Eye Movement Desensitization and Reprocessing (EMDR) therapy in patients treated in the medical setting. Methods: We performed a literature search following the PRISMA guidelines. Studies were included if the effectiveness of EMDR-therapy was assessed in adult patients treated in a medical setting. Excluded were patients exclusively suffering from a mental health disorder, without somatic comorbidity. A risk of bias analysis was performed. This review was registered on PROSPERO (CRD42022325238). Results: Eighty-seven studies, of which 26 (pilot)-RCTs were included and categorized in 14 medical domains. Additionally, three studies focusing on persistent physical complaints were included. Most evidence exists for its application in the fields of oncology, pain, and neurology. The overall appraisal of these studies showed at least moderate to high risks of bias. EMDR demonstrated effectiveness in reducing symptoms in 85 out of 87 studies. Notably, the occurrence of adverse events was rarely mentioned. Conclusions: Overall, outcomes seem to show beneficial effects of EMDR on reducing psychological and physical symptoms in patients treated in a medical setting. Due to the heterogeneity of reported outcomes, effect sizes could not be pooled. Due to the high risk of bias of the included studies, our results should be interpreted with caution and further controlled high-quality research is needed.

Competing Interests: The authors declare no conflict of interest.

Background: Esophagectomy is associated with lasting effect on health-related quality of life (HRQOL). Patients desire detailed information on the expected impact of treatment on their postoperative HRQOL. The aim of the present study is to identify clinicopathological characteristics predictive for changes in short-term and long-term HRQOL after neoadjuvant chemoradiotherapy (nCRT) and surgery., Methods: HRQOL was measured using EORTC-QLQ-C30 and QLQ-OES24 questionnaires prior to nCRT, three, six, nine and twelve months postoperatively and at a minimum of six years postoperatively. Based on previous experience and available literature, several subgroups were predefined for different clinicopathological characteristics: baseline global HRQOL, WHO performance status, histology, tumor stage and tumor location. The primary endpoints of the present study were the change compared to baseline in the HRQOL dimensions physical functioning and eating problems. Secondary endpoints were global HRQOL, fatigue and emotional problems., Results: In total, 134 (76%) of 177 patients who received HRQOL questionnaires, responded at baseline. Patients who reported a high baseline global HRQOL had a more severe deterioration in eating problems (+14.5 to + 18.0), global HRQOL (-16.0 to -28.0) and fatigue (+10.5 to +14.9) up to six years postoperatively compared to patients who reported a low baseline global HRQOL. Patients who had stage 2 tumor (UICC 6th edition) had a more severe deterioration in eating problems (+14.6 to +19.0) and global HRQOL (-10.1 to -17.1) than patients who had stage 3 tumor., Conclusions: The results suggest that patients with locally advanced esophageal cancer in favorable condition at baseline decline more in terms of various HRQOL outcomes., (© 2023. The Author(s).)

Introduction: Few studies have been conducted into how physicians use steering behaviour that may persuade patients to choose for a particular treatment, let alone to participate in a randomised trial. The aim of this study is to assess if and how surgeons use steering behaviour in their information provision to patients in their choice to participate in a stepped-wedge cluster randomised trial investigating an organ sparing treatment in (curable) oesophageal cancer (SANO trial)., Materials and Methods: A qualitative study was performed. Thematic content analysis was applied to audiotaped and transcribed consultations of twenty patients with eight different oncological surgeons in three Dutch hospitals. Patients could choose to participate in a clinical trial in which an experimental treatment of 'active surveillance' (AS) was offered. Patients who did not want to participate underwent standard treatment: neoadjuvant chemoradiotherapy followed by oesophagectomy., Results: Surgeons used various techniques to steer patients towards one of the two options, mostly towards AS. The presentation of pros and cons of treatment options was imbalanced: positive framing of AS was used to steer patients towards the choice for AS, and negative framing of AS to make the choice for surgery more attractive. Further, steering language, i.e. suggestive language, was used, and surgeons seemed to use the timing of the introduction of the different treatment options, to put more focus on one of the treatment options., Conclusion: Awareness of steering behaviour can help to guide physicians in more objectively informing patients on participation in future clinical trials., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: This study explores patients' need for information and support in deciding on esophageal cancer treatment, when experimental active surveillance and standard surgery are both feasible., Methods: This psychological companion study was conducted alongside the Dutch SANO-trial (Surgery As Needed for Oesophageal cancer). In-depth interviews and questionnaires were used to collect data from patients who declined participation in the trial because they had a strong preference for either active surveillance (n = 20) or standard surgery (n = 20). Data were analyzed using both qualitative and quantitative techniques., Results: Patients prefer to receive information directly from their doctors and predominantly rely on this information to make a treatment decision. Other information resources are largely used to confirm their treatment decision. Patients highly value support from their loved ones and appreciate emphatic doctors to actively involve them in the decision-making process. Overall, patients' needs for information and support during decision-making were met., Conclusions: The importance of shared decision-making and the role doctors have in this process is underlined. The role of doctors is essential at the initial phase of decision-making: Once patients seem to have formed their treatment preference for either active surveillance or surgery, the influence of external resources (including doctors) may be limited., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Objectives: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support., Methods: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected., Results: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of 'psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was 'worrying about the future of my loved ones' (22.0%); for relatives this was 'fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs., Conclusions: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Neoadjuvant chemoradiotherapy (nCRT) followed by esophagectomy is a standard treatment for potentially curable esophageal cancer. Active surveillance in patients with a clinically complete response (cCR) 12 weeks after nCRT is regarded as possible alternative to standard surgery. The aim of this study is to monitor the safety, adherence and effectiveness of active surveillance in patients outside a randomized trial., Methods: This nationwide prospective cohort study aims to accrue operable patients with non-metastatic histologically proven adenocarcinoma or squamous cell carcinoma of the esophagus or esophagogastric junction. Patients receive nCRT and response evaluation consists of upper endoscopy with bite-on-bite biopsies, endoscopic ultrasonography plus fine-needle aspiration of suspicious lymph nodes and 18 F-fluorodeoxyglucose positron emission tomography/computed tomography scan. When residue or regrowth of tumor in the absence of distant metastases is detected, surgical resection is advised. Patients with cCR after nCRT are suitable to undergo active surveillance. Patients can consult an independent physician or psychologist to support decision-making. Primary endpoint is the number and severity of adverse events in patients with cCR undergoing active surveillance, defined as complications from response evaluations, delayed surgery and the development of distant metastases. Secondary endpoints include timing and quality of diagnostic modalities, overall survival, progression-free survival, fear of cancer recurrence and decisional regret., Discussion: Active surveillance after nCRT may be an alternative to standard surgery in patients with esophageal cancer. Similar to organ-sparing approaches applied in other cancer types, the safety and efficacy of active surveillance needs monitoring before data from randomized trials are available., Trial Registration: The SANO-2 study has been registered at ClinicalTrials.gov as NCT04886635 (May 14, 2021) - Retrospectively registered., (© 2023. The Author(s).)

Background: Itch, and thereby the scratching behavior, is a common complaint in atopic dermatitis. Scratching damages the skin, which in turn worsens the itch. This itch-scratch cycle perpetuates the skin condition and has a major impact on the patient's quality of life. In addition to pharmacological treatment, psychological interventions show promising results in reducing scratching behavior., Objectives: To investigate the effect of treatment according the EMDR treatment protocol for urge on scratching behavior of atopic dermatitis patients in a controlled study., Methods: This study applies a multiple baseline across subjects design. Six patients were randomly allocated to different baseline lengths and all of them started registration of scratching behavior at the same day, using a mobile phone application. Nocturnal scratching was registered by a smart watch application. The total study duration was 46 days and was equal for all patients. Treatment consisted of two sessions using the EMDR treatment protocol for urge. Furthermore, standardized measures were used to assess disease activity, quality of life, and self-control. The nonoverlap of all pairs effect size was calculated for the daily measure data., Results: One patient dropped out. Visual inspection suggests that the scratching behavior decreased over time in all patients. Furthermore, a moderate effect size of the treatment is found. During the baseline phase, scratching behavior fluctuated considerably and showed a slight negative trend. Outcomes of disease activity decreased over time and patients' self-control and quality of life improved after treatment. Nocturnal scratching behavior did not change after the intervention., Conclusion: The results of the visual analysis of day time scratching behavior, disease activity, quality of life, and self-control seem promising. These findings pave the way for future research into the effect of the new intervention on other skin conditions suffering from scratching behavior, such as prurigo nodularis., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 de Veer, Waalboer-Spuij, Hijnen, Doeksen, Busschbach and Kranenburg.)

Background: A breast cancer diagnosis can threaten every aspect of a woman's wellbeing, including her mental health. With the growing number of breast cancer survivors, studies addressing mental health in this population are of increasing importance now more than ever. Therefore, the current study investigated trends in emotional functioning and psychosocial wellbeing of breast cancer survivors, and the demographic and treatment characteristics that may influence these trends., Methods: Prospectively collected data of women treated for breast cancer at the Erasmus MC were analyzed in this study using a cohort study design. Emotional functioning was measured using the EORTC-QLQ-C30, while psychosocial wellbeing was measured using the BREAST-Q. Type of surgery, age, family status and employment status of study participants were retrieved, and multilevel analyses were performed to identify trends in emotional functioning and psychosocial wellbeing and to determine the relationship between aforementioned characteristics and these outcomes., Results: Three hundred thirty-four cancer survivors were analyzed. Psychosocial wellbeing declined, but emotional functioning showed a steady improvement over time. Women who underwent breast reconstruction showed a steeper increase in their emotional functioning, and women with no partner or children showed a marginal decline in psychosocial wellbeing between baseline and 12 months after surgery., Conclusions: These findings can be utilized by healthcare teams to identify breast cancer patients at risk for emotional problems and to provide adequate psychological support to those women who need help dealing with their emotions and self-concept in order to optimize clinical treatment., (© 2023. The Author(s).)

Active surveillance may be a safe and effective treatment in oesophageal cancer patients with a clinically complete response after neoadjuvant chemoradiotherapy (nCRT). In the NOSANO-study we gained insight in patients' motive to opt for either an experimental treatment called active surveillance or for standard immediate surgery. Both qualitative and quantitative analyses methods were used. Forty patients were interviewed about their treatment preference, 3 months after completion of nCRT (T1). Data were recorded, transcribed verbatim and analysed according to the principles of grounded theory. In addition, at T1 and T2 (12 months after completion of nCRT) questionnaires on health-related quality of life, coping, anxiety and decisional regret (only T2) were administered. Interview data analyses resulted in a conceptual model with 'dealing with threat of cancer' as the central theme. Patients preferring active surveillance tend to cope with this threat by confiding in their bodies and good outcomes. Their mind-set is one of 'enjoy life now'. Patients preferring surgery tend to cope by minimizing uncertainty and eliminating the source of cancer. Their mind-set is one of 'don't give up, act now'. Furthermore, questionnaire results showed that patients with a preference for standard surgery had a lower quality of life. Patient preferences are individualized and thus difficult to predict. Our model can help healthcare professionals to determine patient preferences for treatment. Coping style and mind-set seem to be determining factors here., (© 2022 The Authors. International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC.)

Introduction: Chronic stress and burnout are highly prevalent among academically trained healthcare professionals, negatively affecting their well-being and capacity to engage in their work. Resilience to stress develops early in one's career path, hence offering resilience training to university students in these professions is one approach to fostering well-being and mental health. The aim of this study is to assess whether offering mindfulness-based resilience training to university students in healthcare professions reduces their perceived chronic stress., Methods and Analysis: The study has a hybrid design combining a longitudinal observational cohort with a nested randomized controlled trial (RCT) with sequential multiple assignment and multistage adaptive interventions while taking participants' preferences into account. All students in healthcare related programmes at the Erasmus University Rotterdam are invited to participate. Within the observational cohort, students with a score of 14 or higher on the Perceived Stress Scale (PSS) are invited to take part in the RCT (n = 706). Eligible participants are randomized to control or active intervention in a ratio of 1:6. Those randomized to the control group and non-randomized participants in the cohort receive passive web-based psychoeducation about chronic stress and burnout through referral to specific websites. Participants randomized to the intervention group receive one of 8 active mindfulness-based interventions. They select a rank order of 4 preferred interventions and are randomized across these with equal probability. Non-response to the intervention is followed by sequential randomized assignment to another intervention, for a total maximum of 3 sequential interventions. All participants receive questionnaires at baseline, before and after each 8-week intervention period, and at 1- and 2-year follow-up. The primary outcome is perceived chronic stress measured with the PSS. Secondary outcomes include mental well-being, burnout, quality of life, healthcare utilization, drug use, bodyweight, mental and physical stress-related symptoms, resilience, and study progress., Ethics and Registration: Approval from the Medical Ethics Review Committee was obtained under protocol number MEC-2018-1645. The trial is registered in the Netherlands National Trial Register by registration number NL7623, 22/03/2019, https://www.trialregister.nl/., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Apart from funding for this study as mentioned, Dr. Hunink receives (or received in the past 36 months) Royalties from Cambridge University Press for a textbook on Medical Decision Making, reimbursement of expenses from the European Society of Radiology (ESR) for work on the ESR guidelines for imaging referrals, reimbursement of expenses from the European Institute for Biomedical Imaging Research (EIBIR) for membership of the Scientific Advisory Board, and research funding from the American Diabetes Association, the Netherlands Organization for Health Research and Development, the German Innovation Fund, and the Gordon and Betty Moore Foundation., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: Clear information and supportive care are necessary for patients with cancer to effectively manage their condition. Traditionally, healthcare professionals offer information and support via the so-called formal care route. In addition, research has found favorable effects of informal care provided by volunteer programs and informal "walk-in support centers." Less research has been done on initiatives that combine formal and complementary informal supportive care for patients with cancer. This systematic literature study aimed to discover (1) which types of initiatives are described in the literature, (2) what type of care they offer, and (3). how they are evaluated in terms of outcome measures., Methods: We performed a systematic literature search of MEDLINE, Embase, PsycINFO, and CINAHL. Studies were included if the collaboration between one type of formal care together with one type of informal care was explicitly mentioned in the article. The search was not restricted to a specific cancer type., Results: A total of 4869 records were retrieved and 18 studies were included. In most studies, the care provided consisted of emotional support for, and/or providing information to, patients and their families. Initiatives were evaluated with interviews and questionnaires. Patients with cancer reported that they were satisfied with the care offered, including information, social and emotional support, help with activities of daily living, and family-related issues. Volunteers reported that visits they made were experienced positive and rewarding and the volunteers were confident about their contribution to general healthcare. Some negative experiences were reported by volunteers, e.g., interference of their own cancer diagnosis with volunteer work. The importance of proper training was stressed., Conclusions: Initiatives combining formal and informal supportive care hold the potential of added value in terms of providing emotional support for, and providing information to, patients with cancer. Support and specific training for volunteers can be viewed as success factors in the involvement of volunteers in formal care practices., (© 2022. The Author(s).)

This study aimed at investigating nurse practitioners' self-efficacy and behavior in supporting self-management of patients with a progressive, life-threatening illness and their relatives. We adapted an existing validated instrument for this purpose, amongst other things by adding a seventh subscale "attention for relatives," and administered it in a nationwide, cross-sectional online survey among Dutch nurse practitioners. We analyzed associations between self-reported self-efficacy and behavior using Pearson correlations and paired sample t tests. Associations between self-efficacy and behavior with nurse practitioners' characteristics were examined using linear regression models. Most nurse practitioners (n = 327; 26% complete responses) were women (93%). Subscale and total scores for nurse practitioners' self-efficacy were moderately positively correlated with those for their behavior in self-management support. Subscale and total scores were statistically significantly higher for their self-efficacy than for their behavior. Increased work experience with patients with a progressive, life-threatening illness was associated with higher scores on self-efficacy and behavior in self-management support. We conclude that nurse practitioners are confident in their ability to support self-management; yet, they do not always use these competencies in practice., Competing Interests: The author have no conflicts of interest to disclose., (Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: Persons with advanced cancer and their relatives experience physical, emotional, and psychosocial consequences of the illness. Most of the time, they must deal with these themselves. While peer self-management support programs may be helpful, there is little evidence on their value for this population. We present the research protocol of our SMART study that will evaluate the effectiveness of the "Living with Cancer" peer self-management support program, aimed at improving self-management behaviors, self-efficacy, and health-related quality of life of persons with advanced cancer and their relatives., Methods: We will conduct a non-randomized stepped wedge study in the Netherlands. We will include 130 persons with advanced cancer and 32 relatives. Participants can choose to either start the program within 4 weeks after inclusion or after eight to 10 weeks. The "Living with Cancer" is a peer self-management support program, based on the Chronic Disease Self-Management Program. It consists of six 1,5 hours video-conferencing group meetings with eight to 12 participants, preceded by two or three preparatory audio clips with supportive text per session. The program has the following core components: the learning of self-management skills (action-planning, problem-solving, effective communication, and decision-making), discussing relevant themes (e.g. dealing with pain and fatigue, living with uncertainty, and future planning), and sharing experiences, knowledge, and best practices. The primary outcome for both persons with advanced cancer and relatives is self-management behavior assessed by the subscale "constructive attitudes and approaches" of the Health Education Impact Questionnaire. Secondary outcomes are other self-management behaviors, self-efficacy, health-related quality of life, symptoms, depression and anxiety, and loneliness. Participants complete an online questionnaire at baseline, and after eight and 16 weeks. After each session, they complete a logbook about their experiences. Group meetings will be video recorded., Discussion: SMART aims to evaluate an innovative program building on an evidence-based self-management program. New features are its use for persons with advanced cancer, the inclusion of relatives, and the video-conferencing format for this population. The use of both quantitative and qualitative analyses will provide valuable insight into the effectiveness and value of this program., Trial Registration: This study was registered in the Dutch Trial Register on October 2021, identifier NL9806 ., (© 2022. The Author(s).)

Background and Aims: Homozygous familial hypercholesterolemia (HoFH) is characterized by severely elevated low-density lipoprotein cholesterol (LDL-C) levels leading to extremely premature atherosclerotic cardiovascular disease. Therefore, healthcare professionals consider HoFH to have major impact on patients' life. Remarkably, little is known on how patients deal with their condition. The aim of this study is to investigate how Dutch patients experience and cope with HoFH in daily life., Methods: Adult patients with genetically confirmed HoFH, treated at the 3 specialized HoFH-centers in the Netherlands, were interviewed in-depth. Interview transcripts were analyzed according to grounded theory. Health-related quality of life (QoL) and coping were measured with the EuroQol (EQ)-5D-5L questionnaire and the Threatening Medical Situations Inventory (TMSI), respectively., Results: 20 Dutch HoFH patients were interviewed: 50% women, median age 38 years, 60% with cardiovascular disease, 10% on apheresis. Coding of the transcripts resulted in a conceptual model, with disease perception as the central theme. Individual TMSI-results corresponded to the interviews, with most patients showing both monitoring (information-seeking behavior) and blunting (distractive strategies) coping styles. The median EQ-5D-5L health utility score (0.839) was only 5% below the Dutch population (0.887). Transient anxiety was reported when confronted with the consequences of HoFH in daily life. Patients reported high confidence in treatment by a dedicated HoFH center, which helped them cope with their disease., Conclusions: Dutch HoFH patients use a variety of effective coping mechanisms in such a way that their subjective QoL is only slightly affected. Healthcare professionals can use this knowledge to tailor their care to the specific needs of these patients., (Copyright © 2022 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Mindfulness has become increasingly popular, and positive outcomes have been reported for mindfulness-based interventions (MBIs) in reducing stress. These findings make room for innovative perspectives on how MBIs could be applied, for instance through mobile health (mHealth)., Objective: The aim of this study is to investigate whether a nonguided mindfulness mobile app can decrease perceived stress in a nonclinical Dutch population over the course of 8 weeks, with follow-up at 6 months., Methods: A randomized controlled trial was performed to compare an experimental group that made use of a structured 8-week mHealth mindfulness program and a control group after 8 weeks, with follow-up after 6 months. Participants were recruited via a national television program. The primary outcome measure was perceived stress as measured by the Perceived Stress Scale, secondary outcomes were symptoms of burnout (measured using the visual analog scale [VAS]) and psychological symptoms (measured using the Four-Dimensional Symptom Questionnaire [4DSQ] at follow-up). Outcomes were analyzed using a multilevel regression model., Results: At baseline, 587 respondents were included. Results showed no postintervention differences between groups for the level of perceived stress. With regard to the secondary outcome measures, the VAS for emotional exhaustion and physical exhaustion showed significantly lower scores for the experimental group after 8 weeks (P=.04 and P=.01, respectively), but not at follow-up. There were no differences between groups for psychological symptoms measured using the 4DSQ., Conclusions: These findings do not support our hypothesis that using the mindfulness app would reduce stress levels. However, our findings related to diminished exhaustion at 8 weeks are encouraging and require further investigation., Trial Registration: ClinicalTrials.gov NCT05246800; https://clinicaltrials.gov/show/NCT05246800., (©Leonieke W Kranenburg, Jamie Gillis, Birgit Mayer, Witte J G Hoogendijk. Originally published in JMIR Mental Health (https://mental.jmir.org), 18.03.2022.)

Objectives: The aim of the current study is to gain insight into the factors that benefit vitality and resilience of healthcare workers during the COVID-19 pandemic, to develop and direct specific support strategies., Design, Setting and Participants: This study applies a qualitative design, consisting of six focus groups and five interviews among 38 frontline healthcare workers in a large Dutch academic hospital. Included were professionals of the intensive care unit, COVID-19 departments, infection prevention units and facility management services. The study was conducted in October and November 2020, during the second wave of the COVID-19 pandemic., Data Analysis: Thematic analysis was applied to focus group and interview data to gain insight into the factors that contribute to maintaining vitality and resilience, and to assess specific support needs., Results: Data analysis of the focus groups and individual interviews resulted in a thematic map of the factors that contribute to maintaining resilience and vitality. The map stretches over two axes: one ranging from a healthy basis to adequate professional functioning and the other from individual to organisation, resulting in four quadrants: recharge and recover (healthy basis, individual), safety and connectedness at work (healthy basis, organisational), collaboration (professional functioning, organisational) and professional identity (professional functioning, individual)., Conclusion: Areas for organisational support strategies to increase vitality and resilience among healthcare professionals are: consistent communication, realistic job performance expectations, monitor and improve mental resilience, showing appreciation and act upon practical support requests., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: The purpose of this study is to describe the implementation and outcomes of an Eye Movement and Desensitization Reprocessing (EMDR) treatment-program for women with posttraumatic stress disorder (PTSD) after childbirth., Methods: A prospective cohort-study with pre- and post-measurements was carried out in the setting of an academic hospital in the Netherland. Included were women who gave birth to a living child at least 4 weeks ago, with a diagnosis of PTSD, or severe symptoms of PTSD combined with another psychiatric diagnosis. All received up to 8 sessions of EMDR-therapy. The posttraumatic stress disorder Checklist for DSM-5 was administered before and after treatment. Trauma history was assessed before treatment with the Life Events Checklist for the DSM-5, the Childhood Trauma Questionnaire and the Childbirth Perception Scale. Descriptive statistics were used., Results: Forty-four women were referred, 26 met the inclusion criteria. After treatment, none of the women met the criteria for diagnosis of PTSD after on average 5 weekly sessions of EMDR- therapy. These outcomes are promising, as they were achieved in women with relatively high levels of psychiatric comorbidity (64%) and high rates of previous mental health treatment (80%)., Conclusion: Implementing an EMDR-treatment program for women with PTSD after childbirth in the setting of an academic hospital is feasible and effective. Key factors for success include a close collaboration between the relevant hospital departments and a thorough case conceptualization addressing the etiology of the PTSD., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Kranenburg, Bijma, Eggink, Knijff and Lambregtse-van den Berg.)

Objectives: Self-management of patients with advanced cancer is challenging. Although healthcare professionals may play a crucial role in supporting these patients, scant scientific attention has been paid to their perspectives. Therefore, we examined healthcare professionals' views on self-management and self-management support in this population., Methods: We conducted qualitative interviews with 27 purposively sampled medical specialists (n = 6), nurse specialists (n = 6), general practitioners (n = 8) and homecare/ hospice nurses (n = 7) in the Netherlands. Transcripts were analysed using thematic analysis., Results: Healthcare professionals experienced self-management of patients with advanced cancer to be diverse, dynamic and challenging. They adopted instructive, collaborative and advisory roles in self-management support for this population. Whereas some professionals preferred or inclined towards one role, others indicated to switch roles, depending on the situation., Conclusions: Just like patients with advanced cancer, healthcare professionals differ in their views and approaches regarding self-management and self-management support in this population. Therefore, instructive, collaborative and advisory self-management support roles will all be useful under certain circumstances., Practice Implications: Healthcare professionals can support self-management by being aware of their own views and communicating these clearly to their patients and colleagues. Education in self-management support should include self-reflection skills and discuss the relation between self-management and professional care., Competing Interests: Declaration of competing interest The authors (SD, RS, LK, HN, FW, CR, AH and JR) declare no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (Copyright © 2021 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background: The goal of postmastectomy breast reconstruction (BR) is to improve the quality of life of patients. However, complications following autologous BR (A-BR) and implant-based BR (I-BR) occur frequently and may even lead to BR-failure, which can be a distressing event for both patients and surgeons. The current study, therefore, examines the experiences of both patients and surgeons after a BR-failure., Methods: Patients with a failed BR from a large multicenter cohort study and participating plastic surgeons were invited to participate in semi-structured interviews focusing on their experiences. The interviews were analyzed according to the principles of grounded theory., Results: Fourteen patients with a failed I-BR, four patients with a failed A-BR, and four plastic surgeons were participated. Three main categories emerged from the data: personal experiences with BR-failure, the motives for a redo of a failed BR, and patient-surgeon communication. Patients would like to be treated with more attention to their personal feelings and lives, instead of being approached from a purely medical-technical perspective. Surgeons may experience feelings of guilt leading to the strong urge to fix the failed BR, whereas patients may be less inclined to undergo additional operations. Patients want to know what the choice for a particular type of BR would mean to their personal lives. The impact of I-BR-failure may be underestimated and requires the same degree of intensive aftercare and attention., Conclusions: Implementing the recommendations of this study in clinical practice may facilitate improvements in how both patients and surgeons cope with a BR-failure., Competing Interests: Declaration of Competing Interest None., (Crown Copyright © 2020. Published by Elsevier Ltd. All rights reserved.)

Background: The aim was to evaluate the cost-utility of four common surgical treatment pathways for breast cancer: mastectomy, breast-conserving therapy (BCT), implant breast reconstruction (BR) and autologous-BR., Methods: Patient-level healthcare consumption data and results of a large quality of life (QoL) study from five Dutch hospitals were combined. The cost-effectiveness was assessed in terms of incremental costs and quality adjusted life years (QALYs) over a 10-year follow-up period. Costs were assessed from a healthcare provider perspective., Results: BCT resulted in comparable QoL with lower costs compared to implant-BR and autologous-BR and showed better QoL with higher costs than mastectomy (€17,246/QALY). QoL outcomes and costs of especially autologous-BR were affected by the relatively high occurrence of complications. If reconstruction following mastectomy was performed, implant-BR was more cost-effective than autologous-BR., Conclusion: The occurrence of complications had a substantial effect on costs and QoL outcomes of different surgical pathways for breast cancer. When this was taken into account, BCT was most the cost-effective treatment. Even with higher costs and a higher risk of complications, implant-BR and autologous-BR remained cost-effective over mastectomy. This pleas for adapting surgical pathways to individual patient preferences in the trade-off between the risks of complications and expected outcomes., Competing Interests: Declaration of competing interest Prof. Dr. Busschbach is a member of the non-profit EuroQoL Group and receives financial compensation for managerial activities for the group. For the remaining authors, none were declared., (Copyright © 2020. Published by Elsevier Ltd.)

Purpose of Review: Medical decisions concerning active surveillance are complex, especially when evidence on superiority of one of the treatments is lacking. Decision aids have been developed to facilitate shared decision-making on whether to pursue an active surveillance strategy. However, it is unclear how these decision aids are designed and which outcomes are considered relevant. The purpose of this study is to systematically review all decision aids in the field of oncological active surveillance strategies and outcomes used by authors to assess their efficacy., Recent Findings: A search was performed in Embase, Medline, Web of Science, Cochrane, PsycINFO Ovid and Google Scholar until June 2019. Eligible studies concerned interventions aiming to facilitate shared decision-making for patients confronted with several treatment alternatives, with active surveillance being one of the treatment alternatives. Twenty-three eligible articles were included. Twenty-one articles included patients with prostate cancer, one with thyroid cancer and one with ovarian cancer. Interventions mostly consisted of an interactive web-based decision aid format. After categorization of outcomes, seven main groups were identified: knowledge, involvement in decision-making, decisional conflict, treatment preference, decision regret, anxiety and health-related outcomes. Although active surveillance has been implemented for several malignancies, interventions that facilitate shared decision-making between active surveillance and other equally effective treatment alternatives are scarce. Future research should focus on developing interventions for malignancies like rectal cancer and oesophageal cancer as well. The efficacy of interventions is mostly assessed using short-term outcomes.

Background: Differences in quality-of-life outcomes after different surgical breast cancer treatment options, including breast reconstruction, are relevant for counseling individual patients in clinical decision-making, and for (societal) evaluations such as cost-effectiveness analyses. However, current literature shows contradictory results, because of use of different patient-reported outcome measures and study designs with limited patient numbers. The authors set out to improve this evidence using patient-reported outcome measures in a large, cross-sectional study for different surgical breast cancer treatment options., Methods: Quality of life was assessed through the EQ-5D-5L, European Organization for Research and Treatment of Cancer Quality of Life Questionnaires C30 and BR23, and the BREAST-Q. Patients with different treatments were compared after propensity-weighted adjustment of pretreatment differences. The EQ-5D was used to value the effect of surgical complications., Results: A total of 1871 breast cancer patients participated (breast-conserving surgery, n = 615; mastectomy, n = 507; autologous reconstruction, n = 330; and implant-based reconstruction, n = 419). Mastectomy patients reported the lowest EQ-5D score (mastectomy, 0.805, breast-conserving surgery, 0.844; autologous reconstruction, 0.849; and implant-based reconstruction, 0.850) and functioning scores of the C30 questionnaire. On the BREAST-Q, autologous reconstruction patients had higher mean Satisfaction with Outcome, Satisfaction with Breasts, and Sexual Well-being scores than implant-based reconstruction patients. Complications in autologous reconstruction patients resulted in a substantially lower quality of life than in implant-based reconstruction patients., Conclusions: This study shows the added value of breast conservation and reconstruction compared with mastectomy; however, differences among breast-conserving surgery, implant-based reconstruction, and autologous breast reconstruction were subtle. Complications resulted in poorer health-related quality of life.

Background: Psychological symptoms appear to be frequent among patients with mastocytosis and can significantly affect patient quality of life. However, it remains unclear whether and to which extent this may be the case., Objective: To investigate he presence and type of psychological symptoms and quality of life in patients with mastocytosis., Methods: In this cross-sectional cohort study of adult patients with mastocytosis, all patients completed the 36-item Short Form Health Survey (SF-36) and the 90-item Symptom Checklist (SCL-90). Results were compared with those of a healthy groups of patients with other diseases (chronic pain and cancer) and healthy populations., Results: Fifty patients were included in the study. Seventy percent had indolent systemic mastocytosis. Patients with mastocytosis scored significantly worse than a healthy norm group on the total SCL-90 and more specifically on the dimensions of depression, somatization, sleeping problems, and inadequacy of acting and thinking. Strikingly, patients with mastocytosis scored similarly to patients with cancer on the SF-36 subdomains of general health perception and vitality. However, no significant difference in the mental health subdomain of the SF-36 was found when compared with a healthy group., Conclusion: In addition to the presence of psychological symptoms, the physical symptoms that are associated with mastocytosis also have a significant impact on the quality of life of patients with this disease. Therefore, correct treatment through symptom control and psychological counseling is necessary., Trial Registration: EudraCT Identifier 2015-004604-37., (Copyright © 2020 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.)

Purpose: Outcome measurements currently used in chronic uveitis care fail to cover the full patient perspective. The aim of this study is to develop a conceptual model of the factors that adult patients with chronic uveitis consider to be important when evaluating the impact of their disease and treatment., Methods: A qualitative study design was used. Twenty chronic uveitis patients were recruited to participate in two focus groups. Data were transcribed verbatim and analysed using thematic analysis in ATLAS.ti., Results: Coding of the transcripts resulted in a total of 19 codes divided over five themes: 1) disease symptoms and treatment; 2) diagnosis and treatment process; 3) impact on daily functioning; 4) emotional impact; and 5) treatment success factors., Conclusion: The conceptual model resulting from this study can contribute to the development of future uveitis specific measures in adults.

Background: The EuroQol EQ-5D-5L instrument is the most widely used quality of life (QoL) measure in health economic evaluations. It is unclear whether such a generic instrument is valid enough to estimate the benefits of breast reconstruction (BR), given the specific changes observed in QoL after BR. Hence, we aimed to evaluate the validity of the EQ-5D-5L in patients who had undergone postmastectomy BR., Methods: In a 10-year cross-sectional cohort study, 463 mastectomy patients completed an online survey: 202 patients with autologous-BR (A-BR), 103 with implant-based-BR (I-BR), and 158 without BR (MAS). The results were used to evaluate the psychometric performance of the EQ-5D-5L with respect to the ceiling effect and to known-group, convergent, and discriminant validity, by comparing it with the Breast-Q, the cancer-specific (EORTC-QLQ-C30), and breast cancer-specific (EORTC-QLQ-BR23) questionnaires., Results: The EQ-5D-5L was able to discriminate between patients with and without complications, MAS with or without BR and MAS versus the general population. It was, however, not able to discriminate between A-BR vs. I-BR as well as BR vs. general population. It is not clear whether this was due to the insensitivity of the instrument, insufficient sample sizes, or because there were no actual differences in QoL between these groups. Good convergent and discriminant validity of both the EQ-5D-5L and its individual dimensions were demonstrated. Additional support for the instrument's validity was revealed by moderate correlations between the generic EQ-5D-5L and specific QoL aspects of BR such as sexuality and body image., Conclusions: The results of this study support the validity of the EQ-5D-5L as an outcome measure in health economic evaluations of BR., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Purpose: Ophthalmologists tend to evaluate the results of cataract surgery by focusing on the clinical visual and refractive outcomes and the incidence of complications, where patients' main interest might be their ability to perform daily activities. Therefore, there appears to be a need for optimizing effective communication between patients and ophthalmologist about the outcome of cataract surgery. The aim of this multicentre study was to determine the effects of whether the surgery was performed in one or two eyes, ocular comorbidity and per- and postoperative complications on visual function experienced by patients measured with the Catquest-9SF., Methods: To measure patient-reported outcomes, Catquest-9SF data were collected between 2014 and 2015 in five Dutch hospitals. Data from 870 pairs of questionnaires - completed before and after cataract surgery - were compared with clinical data. Clinical data, retrieved from patients' medical files, consisted of one or two eye surgery, ocular comorbidity and per- and postoperative complications., Results: Quality of vision improved more in patients who had surgery in both eyes and had fewer postoperative complications (both p < 0.001). We found a nonsignificant trend that quality of vision was worse when ocular comorbidity was present. No significant effect of peroperative complications was observed., Conclusion: Our results emphasize the added value of the Catquest-9SF as a tool for visual function experienced by patients; the additional information can complement clinical parameters to improve patient-centred approaches in clinical practice., (© 2018 Acta Ophthalmologica Scandinavica Foundation. Published by John Wiley & Sons Ltd.)

Background: Surgery holds high risk for iatrogenic patient harm. Correct and sufficient communication and information during the surgical process is a root solution for preventing patient harm. Information technology may substantially contribute to engaging patients in this process., Objective: To explore the feasibility of a digital patient-led checklist for cataract surgery, we evaluated the experiences of patients and nurses who have used this novel tool with a focus on use, appreciation, and impact., Methods: A multidisciplinary team, including cataract surgeons, nurses, pharmacists and administrative representatives developed a 19-item digital patient-led checklist for cataract patients who underwent surgery in an ambulatory setting. This "EYEpad" checklist was distributed to patients and their companions during their hospital visit via an application on a tablet. It contained necessary information the patient should have received before or during the surgical preparation (8 items), before anesthesia (2 items), and before discharge (9 items). Patients and their companions were invited to actively indicate the information they received, or information discussed with them, by ticking on the EYEpad. Our qualitative research design included semi-structured individual interviews with 17 patients and a focus group involving 6 nurses. The transcripts were analyzed by 2 independent coders using both deductive and inductive coding., Results: All but one of the 17 patients used the EYEpad, occasionally assisted by his or her companion (usually the partner). In several cases, the checklist was completed by the companion. Most patients felt positively about the usability of the EYEpad. Yet, for most of the patients, it was not clear why they received the checklist. Only 4 of them indicated that they understood that the EYEpad was used to determine if there were sufficient and correct information discussed or checked by the nurses. Although most nurses agreed the EYEpad was easy to use and could be a useful tool for improving patient engagement for improving safety, they felt that not all elderly patients were willing or capable of using it and it interfered with the existing surgical process. They also anticipated the need to spend more time explaining the purpose and use of the EYEpad., Conclusions: Our results showed that a digital patient-led checklist is a potentially valid way to increase patient participation in safety improvement efforts, even among elderly patients. It also illustrates the crucial role nurses play in the implementation and diffusion of technological innovations. Increased patient participation will only improve safety when both healthcare workers and patients feel empowered to share responsibility and balance their power., (©Aline C Stolk-Vos, Jolet JE van der Steen, Constance HC Drossaert, Annemarie Braakman-Jansen, Bart LM Zijlmans, Leonieke W Kranenburg, Dirk F de Korne. Originally published in JMIR Perioperative Medicine (http://periop.jmir.org), 16.07.2018.)

Background: There has been discussion regarding the psychologic functioning of living donors who donate their kidney to an unrelated and unknown patient ("unspecified living donors"). This is the first prospective study to investigate group- and individual-level changes in psychologic functioning among a large group of unspecified donors., Methods: Forty-nine medically and psychologically screened unspecified living kidney donors completed the Symptom Checklist before and after donation., Results: Group-level analysis showed that overall psychologic symptoms increased after donation (P=0.007); the means remained within the average range of the normal population. Individual-level analysis showed that 33 donors showed no statistically significant change, 3 donors showed a statistically significant decrease, and 13 donors showed a statistically significant increase in psychologic symptoms. Two of the latter donors showed a clinically significant increase., Conclusions: We found more increases in psychologic symptoms than decreases, particularly if follow-up time was longer. However, for almost all donors, these increases were not clinically significant and the clinically significant changes found are comparable with natural fluctuations in psychologic symptoms in the general population. Possibly, the donors underreported their psychologic symptoms before donation to pass the screening. Due to the low level of predonation symptoms reported, regression to the mean could also explain the results. Although we found that changes were not associated with donation-related factors, it is possible that other donation-related factors or other life events not measured have an influence on psychologic functioning. Therefore, further research is needed to investigate whether the fluctuations are related to the donation process.

In a growing number of transplant centers worldwide, altruistic donors are accepted to anonymously donate a kidney to a stranger. An important hesitation to expand these transplantation programs is the fear of evoking psychological distress in the altruistic donor after donation. To what extent this fear is justified has not yet been systematically investigated. In this study, 24 altruistic donors were interviewed on average 2 years after donation. Lifetime mental health history, current psychological complaints, satisfaction with and impact of the donation on well-being, motives for donation, communication with recipient and donation experience were assessed. Altruistic donors report a considerable positive impact of donation on psychological well-being, whereas negative impact was limited. Satisfaction with donation was very high. Although a history of a psychiatric diagnosis was ascertained in almost half of the donors, psychological complaints before and after donation were comparable to national average norm scores. Motives for donation were genuine and the experience of donation generally conformed to their expectations. In conclusion, living kidney donation to a stranger does not appear to exacerbate psychological complaints. Moreover, altruistic donors report considerable satisfaction and personal benefit. The exceptional gift of altruistic donors can contribute toward solving the current organ shortage issue.

Background: This is the first large-scale interview study carried out in patients and potential donors who seem unwilling or unable to pursue living kidney donation. By investigating these groups, we explored whether further expansion of the living kidney donation program is feasible., Methods: We interviewed 91 patients on the waiting list for a kidney transplant who did not pursue living kidney donation and their potential donors (n=53). We also included a comparison group. All respondents underwent an in-depth interview by a psychologist about topics that could influence their willingness to pursue living kidney donation., Results: A total of 78% of the patients on the waiting list were willing to accept the offer of a living donor. The main reason for not pursuing living kidney donation was reluctance to discuss the issue with the potential donors. This was also found in the comparison group. Both groups indicated that if there was no donor offer, they tended to interpret this as a refusal to donate. This interpretation not always holds: more than one third (19 of 53) of the potential donors were open to consider themselves as a potential donor. On the other hand, a comparably sized group of potential donors (21 of 53) was reluctant about donation. The main reason for donor reluctance was fear for their health after donation., Conclusion: The majority of patients on the waiting list are willing to accept a living kidney donor, but adopt an awaiting attitude towards their potential donors. Offering those patients professional assistance should be considered.

Living kidney donation provides a promising opportunity in situations where the scarcity of cadaveric kidneys is widely acknowledged. While many patients and their relatives are willing to accept its benefits, others are concerned about living kidney programs; they appear to feel pressured into accepting living kidney transplantations as the only proper option for them. As we studied the attitudes and views of patients and their relatives, we considered just how actively health care professionals should encourage living donation. We argue that active interference in peoples' personal lives is justified - if not obligatory. First, we address the ambiguous ideals of non-directivity and value neutrality in counselling. We describe the main pitfalls implied in these concepts, and conclude that these concepts cannot account for the complex reality of living donation and transplantation. We depict what is required instead as truthful information and context-relative counselling. We then consider professional interference into personal belief systems. We argue that individual convictions are not necessarily strong, stable, or deep. They may be flawed in many ways. In order to justify interference in peoples' personal lives, it is crucial to understand the structure of these convictions. Evidence suggests that both patients and their relatives have attitudes towards living kidney donation that are often open to change and, accordingly, can be influenced. We show how ethical theories can account for this reality and can help us to discern between justified and unjustified interference. We refer to Stephen Toulmin's model of the structure of logical argument, the Rawlsian model of reflective equilibrium, and Thomas Nagel's representation of the particularistic position.