Decision-making experiences of patients and partners opting for active surveillance in esophageal cancer treatment.

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.

Eye Movement Desensitization and Reprocessing (EMDR) treatment in the medical setting: a systematic review.

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.

First overview on the use of EMDR for adult patients treated in the medical setting.EMDR seems beneficial in improving psychological and physical symptoms.Given the heterogeneity of studies and high risk of bias, further controlled studies are needed in this field.

Differences and common ground in the frameworks of health-related quality of life in traditional Chinese medicine and modern medicine: a systematic review.

PURPOSE: This systematic review aims to explore the conceptualization of health-related quality of life (HRQoL) in China. With HRQoL influenced by both modern medicine (MM) and traditional Chinese medicine (TCM), the study seeks to identify differences and common ground between the frameworks of MM and TCM as defined in the literature. METHOD: A systematic literature search was conducted across three Chinese databases and four English databases. The data was extracted including title, author(s), publication year, region, aim, method, category, and result. When sorting data, we broke down the HRQoL frameworks into concepts, domains and facets, with a focus on overlapped facets between the frameworks of MM and TCM. RESULTS: A total of 31 studies were included. In the perspective of TCM, HRQoL is centered around three key 'concepts': (1) 'xingshentongyi' (unity of body and spirit), (2) 'tianrenheyi' (harmony between man and nature), and (3) 'qiqing' (seven emotional forms). In contrast, the MM framework comprises 'physical,' 'mental,' 'social,' and 'environment' domains. Out of the 59 unique facets identified, 28 are common to both TCM and MM, 9 specific to TCM, and 22 specific to MM. 'Appetite,' 'sleep,' and 'energy' are the most frequently mentioned facets in both frameworks. CONCLUSION: The concept of HRQoL in China encompasses frameworks rooted in both TCM and MM. While TCM and MM have distinct healthcare approaches, they share overlapping domains when measuring HRQoL through questionnaires. Furthermore, TCM and MM demonstrate considerable convergence in terms of HRQoL facets, showing the potential for utilizing HRQoL instruments across different cultural settings.

Cancer centre information and support services and patient needs: participatory action research study.

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.

Impact of clinical severity on treatment response in a randomized controlled trial comparing day hospital and intensive outpatient mentalization-based treatment for borderline personality disorder.

This study examined the impact of clinical severity on treatment outcome in two programs that differ markedly in treatment intensity: day hospital mentalization-based treatment (MBT-DH) and intensive outpatient mentalization-based treatment (MBT-IOP) for borderline personality disorder (BPD). A multicenter randomized controlled trial was conducted. Participants include the full intention-to-treat sample of the original trial of N = 114 randomized BPD patients (MBT-DH n = 70, MBT-IOP n = 44), who were assessed at baseline and subsequently every 6 up to 36 months after start of treatment. Outcomes were general symptom severity, borderline features, and interpersonal functioning. Clinical severity was examined in terms of severity of BPD, general symptom severity, comorbid symptom disorders, comorbid personality disorders, and cluster C personality features. None of the severity measures was related to treatment outcome or differentially predicted treatment outcome in MBT-DH and MBT-IOP, with the exception of a single moderating effect of co morbid symptom disorders on outcome in terms of BPD features, indicating less improvement in MBT-DH for patients with more symptom disorders. Overall, patients with varying levels of clinical severity benefited equally from MBT-DH and MBT-IOP, indicating that clinical severity may not be a useful criterion to differentiate in treatment intensity.

Validity and responsiveness of EQ-5D-Y in children with haematological malignancies and their caregivers.

The psychometric properties of the EQ-5D-Y have not been widely tested in severely ill children. The aim of this study was to assess and compare the validity and responsiveness of the EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric inpatients with haematological malignancies and caregivers. Respondents completed the interviewer-administered self-complete or proxy version of the EQ-5D-Y-3L and EQ-5D-Y-5L and an overall health assessment twice on different days. Known-groups validity was assessed by comparing patients who differed in overall health and Eastern Cooperative Oncology Group (ECOG) performance. Responsiveness to worsened health was assessed using standardised effect size (SES) for patients with worsened ECOG grade, self-reported rating, or chemotherapy initiation. Ninety-six dyads completed the baseline questionnaires. A smaller proportion of patients reported "no problems" on the EQ-5D-Y-5L compared to EQ-5D-Y-3L for most of the five dimensions. Patients in poor health reported more problems in all dimensions and had higher EQ-5D-Y-5L level sum score, lower EQ VAS and EQ-5D-Y-3L index scores (Cohen's d ES: 0.32-1.38 for patients; 0.50-2.05 for caregivers). There was a mild to good responsiveness to worsened health condition based on ECOG (SES: 0.14-0.61 for patients; 0.40-0.96 for caregivers), suggesting the proxy version was slightly responsive than the self-complete version of both instruments. The results demonstrated validity and responsiveness for both the self-complete and proxy versions of the EQ-5D-Y-3L and EQ-5D-Y-5L. The proxy and 5-level versions of the instrument were more sensitive than the self-complete and 3-level versions in this patient group.

Psychosocial screening instruments to assist support consultants in patients with cancer.

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.

Surgical prioritization based on decision model outcomes is not sensitive to differences between the health-related quality of life values estimates of physicians and citizens.

PURPOSE: Decision models can be used to support allocation of scarce surgical resources. These models incorporate health-related quality of life (HRQoL) values that can be determined using physician panels. The predominant opinion is that one should use values obtained from citizens. We investigated whether physicians give different HRQoL values to citizens and evaluate whether such differences impact decision model outcomes. METHODS: A two-round Delphi study was conducted. Citizens estimated HRQoL of pre- and post-operative health states for ten surgeries using a visual analogue scale. These values were compared using Bland-Altman analysis with HRQoL values previously obtained from physicians. Impact on decision model outcomes was evaluated by calculating the correlation between the rankings of surgeries established using the physicians' and the citizens' values. RESULTS: A total of 71 citizens estimated HRQoL. Citizens' values on the VAS scale were - 0.07 points (95% CI - 0.12 to - 0.01) lower than the physicians' values. The correlation between the rankings of surgeries based on citizens' and physicians' values was 0.96 (p < 0.001). CONCLUSION: Physicians put higher values on health states than citizens. However, these differences only result in switches between adjacent entries in the ranking. It would seem that HRQoL values obtained from physicians are adequate to inform decision models during crises.

Patients' Preferences Towards Decision Counseling for Active Surveillance After Neoadjuvant Chemoradiotherapy for Esophageal Cancer.

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.

Exploring non-iterative time trade-off methods for valuation of EQ-5D-5L health states.

INTRODUCTION: The composite time trade-off (cTTO) method is used as the primary method for valuing EQ-5D-5L health states, but it requires intensive interviewer training and stringent quality control, which increases the burden of conducting cTTO studies. In this study, two non-iterative variants of the TTO method, non-stopping TTO (nTTO) and open-ended TTO (oTTO), were tested head-to-head with the cTTO method aiming to reduce the administration burden. METHODS: 31 EQ-5D-5L health states from an orthogonal array was selected and valued by a general public sample in China. Data were collected by 7 interviewers with all interviewers performed an equal number of interviews using all three TTO methods. We compared the value distribution, logical consistency, administration burden, and modeling performance of these three TTO methods. RESULTS: In total, 422 participants participated in the valuation interviews, with 139 using the nTTO method, 140 using the oTTO method, and 143 using the cTTO method. Both oTTO and nTTO methods saved around 10 min for conducting an interview. The mean values of three methods were similar with each method showed different characteristics in their value distributions. cTTO outperformed the other two methods in terms of modeling performance. DISCUSSION: Both non-iterative TTO methods showed potential for valuing EQ-5D health states, although their data distributions and modeling performance were inferior to the cTTO method. The results of this study showed the potential of these two alternative non-iterative TTO methods.

Health-related Quality of Life and Fatigue in Liver Transplant Recipients Receiving Tacrolimus Versus Sirolimus-based Immunosuppression: Results From a Randomized Trial.

BACKGROUND: The impact of different immunosuppression regimes on the health-related quality of life (HRQoL) and the severity of fatigue in liver transplant recipients is largely unknown. We investigated the impact of a sirolimus-based regimen compared with a tacrolimus (TAC)-based regimen on the HRQoL and the severity of fatigue. METHODS: In this multicenter, open-label, randomized, controlled trial, 196 patients were randomized 90 d after transplantation to (1) once daily normal-dose TAC or (2) once daily combination therapy of low-dose sirolimus and TAC. HRQoL was measured with the EQ-5D-5L questionnaire, the EQ-visual analog scale, and the severity of fatigue questionnaire Fatigue Severity Score (FSS). The EQ-5D-5L scores were translated to societal values. We examined the HRQoL and the FSS over the course of the study by fitting generalized mixed-effect models. RESULTS: Baseline questionnaires were available for 87.7% (172/196) of the patients. Overall, patients reported the least problems in the states of self-care and anxiety/depression and the most problems in the states of usual activities and pain/discomfort. No significant differences in HrQol and FSS were seen between the 2 groups. During follow-up, the societal values of the EQ-5D-5L health states and the patient's self-rated EQ-visual analog scale score were a little lower than those of the general Dutch population in both study arms. CONCLUSIONS: The HRQoL and FSS were comparable in the 36 mo after liver transplantation in both study groups. The HRQoL of all transplanted patients approximated that of the general Dutch population, suggesting little to no residual symptoms in the long term after transplantation.

Characteristics Predicting Short-Term and Long-Term Health-Related Quality of Life in Patients with Esophageal Cancer After Neoadjuvant Chemoradiotherapy and Esophagectomy.

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.

Unmet care needs of patients with advanced cancer and their relatives: multicentre observational study.

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.

Esophageal cancer patients' need for information and support in making a treatment decision between standard surgery and active surveillance.

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.

Indonesia youth population norms for EQ-5D-Y-3 L, EQ-5D-Y-5 L and the PedsQL generic core scale: lower health related quality of life relates to high economic status and stress.

BACKGROUND: The availability of population norms from generic health-related quality of life (HRQoL) instruments can support the interpretation of health outcomes. This study aimed to provide Indonesian youth population norms for the generic HRQoL measures: EQ-5D-Y-3 L, EQ-5D-Y-5 L, and the PedsQL Generic Core Scales. In addition the opportunity arising from the generation of a large representative sample was taken to explore the relationships between HRQoL, health, and socio-economic factors. METHODS: A representative sample of 1103 Indonesian children (aged 8-16 years) completed EQ-5D-Y-3 L, EQ-5D-Y-5 L, the PedsQL Generic Core Scales, and questions related to demographic data and self-reported health status. A stratified quota sampling design was used to represent Indonesian children in terms of residence, age, gender, and geographical area. Family expenses per capita per month were retrieved from parents to determine a child's economic status. RESULTS: The total sample was representative of the Indonesian youth general population. The proportions of participants who reported problems were 43.35% (EQ-5D-Y-3 L), 44.10% (EQ-5D-Y-5 L), and 94.93% (PedsQL Generic), with 31.7% of children reporting health complaints. Older children (13-16 years) reported more problems than younger children (8-12 years). Children living in urban areas reported more problems than children living in rural areas. The lowest value health state reported was '12332' (valued at 0.54), and the minimum EQ VAS score was 60.00. Moderate correlations were found between EQ-5D-Y-3 L values to EQ VAS scores and to PedsQL Total Score. Hierarchical regression analysis showed that females, older age, and having health complaints contributed to a lower level of HRQoL as measured by EQ-5D-Y-3 L values, EQ VAS, and PedsQL Total Score. Remarkably, children with high economic status had lower EQ VAS and PedsQL Total Scores. Among symptoms, 'having stress' had the largest influence with respect to lower EQ-5D-Y-3L values, EQ VAS, and PedsQL Total Score. CONCLUSIONS: Population norms for children's HRQoL as measured by EQ-5D-Y-3 L, EQ-5D-Y-5 L, and the PedsQL Generic Scales are now available for Indonesia. Age, gender, economic status, and health complaints were related to children's HRQoL. These results provide a basis for health studies and health policy for the youth population of Indonesia.

Paving the way for solutions improving access to kidney transplantation: a qualitative study from a multistakeholder perspective.

OBJECTIVES: The aim of this study was to obtain an in-depth perspective from stakeholders involved in access to kidney transplantation to pave the way for solutions in improving access to kidney transplantation. This study qualitatively explored factors influencing optimal access to kidney transplantation from a broad stakeholder perspective. DESIGN: A qualitative study was performed using semistructured interviews both in focus groups and with individual participants. All interviews were recorded, transcribed and coded according to the principles of grounded theory. SETTING: Participants were healthcare providers (geographically spread), patients and (former living) kidney donors, policy-makers and insurers. PARTICIPANTS: Stakeholders (N=87) were interviewed regarding their perceptions, opinions and attitudes regarding access to kidney transplantation. RESULTS: The problems identified by stakeholders within the domains-policy, medical, psychological, social and economic-were acknowledged by all respondents. According to respondents, more efforts should be made to make healthcare providers and patients aware of the clinical guideline for kidney transplantation. The same opinion applied to differences in medical inclusion criteria used in the different transplantation centres. Stakeholders saw room for improvement based on psychological and social themes, especially regarding the provision of information. Many stakeholders described the need to rethink the current economic model to improve access to kidney transplantation. This discussion led to a definition of the most urgent problems for which, according to the respondents, a solution must be sought to optimise access to kidney transplantation. CONCLUSIONS: Stakeholders indicated a high sense of urgency to solve barriers in patient access to kidney transplantation. Moreover, it appears that some barriers are quite straightforward to overcome; according to stakeholders, it is striking that this process has not yet been overcome. Stakeholders involved in kidney transplantation have provided directions for future solutions, and now it is possible to search for solutions with them.

Patient-reported outcomes in patients with vitreous floaters: A systematic literature review.

Seeking treatment for bothersome vitreous floaters is patient driven. To measure the impact of floaters and treatment on an individual's quality of life, patient-reported outcome measurements (PROMs) are essential. We review all studies using a PROM for patients with floaters. We evaluated content coverage against quality-of-life domains previously identified in other ophthalmic disorders, and against a qualitative study investigating quality-of-life issues in patients with floaters. We assessed measurement properties of PROMs using an extensive range of psychometric quality criteria. We identified 59 studies using 28 different PROMs. Many PROMs were not specifically developed for patients with floaters. Floater-specific PROMs were mostly based on content validation from an ophthalmologist or researcher perspective; two included a patient perspective. Using the outcomes of the qualitative study, we found that the floater-specific PROMs were narrow in their content coverage, with most items relating to visual symptoms and activity limitations. Testing the psychometric quality of PROMs was rare, and when employed mostly limited to responsiveness and known group validity. The remarkable high number of floater-specific PROMs reveals a need for such measurements in ophthalmology. Unfortunately, reporting on psychometric quality is limited, and content development is most often done without patient involvement.