EORTC QLQ-INFO25 Research Articles

T1 colorectal cancer patients' perspective on information provision and therapeutic decision-making after local resection.

Decision-making after local resection of T1 colorectal cancer (T1CRC) is often complex and calls for optimal information provision as well as active patient involvement. The aim was to evaluate the perceptions of patients with T1CRC on information provision and therapeutic decision-making. This multicenter cross-sectional study included patients who underwent endoscopic or local surgical resection as initial treatment. Information provision was assessed using the EORTC QLQ-INFO25 questionnaire. In patients with high-risk T1CRC, we evaluated decisional involvement and satisfaction regarding the choice as to whether to undergo additional treatment after local resection, and the level of decisional conflict using the Decisional Conflict Scale. Ninety-eight patients with T1CRC were included (72% response rate; 79/98 endoscopic and 19/98 local surgical resection; 45/98 high-risk T1CRC). Median time since local resection was 28months (IQR 18); none had developed recurrence. Unmet information needs were reported by 29 patients (30%; 18 low-risk, 11 high-risk), mostly on post-treatment related topics (follow-up visits, recovery time, recurrence prevention). After local resection, 24 of the 45 high-risk patients (53%) underwent additional treatment, while others were subjected to surveillance. Higher-educated patients were more often actively involved in decision-making (93% vs. 43%, p=0.002) and more frequently underwent additional treatment (79% vs. 40%, p=0.02). Decisional conflict (p=0.19) and satisfaction (p=0.78) were comparable between higher- and lower-educated high-risk patients. Greater attention should be given to the post-treatment course during consultations following local T1CRC resection. The differences in decisional involvement and selected management strategies between higher- and lower-educated high-risk patients warrant further investigation.

Enhancing prostate cancer diagnosis communication: A multicenter study evaluating the impact of animated videos, CartDiag Prostate study.

TPS12148 Background: Prostate cancer is the leading cancer among men. Advances in therapeutic techniques, personalized medicine, and the integration of targeted therapies have significantly improved patient outcomes, resulting in a 5-year overall survival of 93%. However, effective patient care requires a shared decision-making framework and clear communication between healthcare professionals and patients. The initial step in patient care involves disclosing the cancer diagnosis during a dedicated consultation, laying the foundation for the patient-physician trust relationship. Nowadays, less than 50% of patients declared that they understood the information provided during the announcement consultation. The main objective of our study is to assess the effect of the announcement system, reinforced by animated videos, on patients' overall understanding of their diagnosis and treatment. Methods: To enhance the disclosure process, animated videos were developed to outline the patient care journey. This multicenter, controlled before-and-after study aimed to evaluate the impact of the usual disclosure process enhanced by animated videos on patients' understanding of advanced or metastatic prostate cancer. Patients were sequentially assigned to two arms: the standard arm (first 45 patients) received usual written and oral information, while the intervention arm (next 45 patients) received written and oral information supplemented by animated videos. To evaluate the effect of the enhanced disclosure process on patients' overall understanding of their diagnosis and treatment using the EORTC QLQ-INFO25 questionnaire at baseline (Day 0) and after 1 month (Day 30), compared to the standard group without enhanced disclosure. This prospective study is the first to assess the impact of supplementing the standard disclosure process with animated videos positively impacts patients' comprehension of advanced or metastatic prostate cancer. The findings will support the potential value of integrating visual aids into the diagnostic disclosure consultation to enhance patient understanding and promote informed decision-making. Clinical trial information: NCT06117696 .

Health-related quality of life in hemato-oncology patients: role of informativeness and doctor-patient communication.

The patient's information about the disease and doctor-patient communication are both constructs whose importance is emphasized in the theory, but much less frequently researched and used in the practice. This study aimed to determine whether certain facets of health-related quality of life of hemato-oncology patients in Croatia could be predicted based on patients' sociodemographic data, the disease's determinants, the patients' information about their disease and the quality of doctor-patient communication. 60 women and 54 men with diagnoses of both leukemia and lymphoma have participated in filling out questionnaires. The survey consisted of a sociodemographic questionnaire, EORTC QLQ-C30(version3), EORTC QLQ-INFO25 and the Doctor-Patient Communication Questionnaire. Patients' sociodemographic data, the disease's determinants, the patients' information about their disease and the quality of doctor-patient communication predicted 26.8 % variance of global health status (F = 2.756, p \< .01), 35.7% variance of physical functioning (F = 4.196, p \< .01), 23.3% variance of role functioning (F = 2.291, p \< .05), 29.9% variance of emotional functioning (F = 3.215, p \< .01) and 27.9% of social functioning (F = 2.881, p \< .01). Predictors that significantly contributed to the change in variance of health-related quality of life were age, duration of diagnosis, the existence of comorbidity, frequency of hospitalization, talking with the psychologist after getting the diagnosis and information. The study offers valuable insights into an under-researched patient population and a better understanding of their health-related quality of life. The results indicate the importance of information that can be implemented in everyday clinical practice, and pave the way for further research on doctor-patient communication.

Cancer patient satisfaction regarding the quality of information received: psychometric validity of EORTC QLQ-INFO25.

to psychometrically validate the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire EORTC QLQ-INFO25 instrument and identify the domains that influence patients' perception of the information received. a cross-sectional methodology with cancer patients in a Brazilian philanthropic hospital institution. Sociodemographic and clinical instruments, EORTC QLQ-C30, EORTC QLQ-INFO25 and Supportive Care Needs Survey - Short Form 34 were used. Analysis occurred using Cronbach's alpha coefficients, intraclass correlation, test-retest and exploratory factor analysis. 128 respondents participated. Cronbach's alpha coefficient was 0.85. The test-retest obtained p-value=0.21. In the factor analysis, one item was excluded. Satisfaction with the information received was 74%, with three areas with averages below 70%. In open-ended questions, there was a greater desire for information. validity evidence was obtained with instrument reliability, consistency and stability. Respondents expressed satisfaction with the information received.

Cancer patient satisfaction regarding the quality of information received: psychometric validity of EORTC QLQ-INFO25

RESUMO Objetivos: validar psicometricamente o instrumento da European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire EORTC QLQ-INFO25 e identificar os domínios que influenciam na percepção do paciente sobre as informações recebidas. Métodos: metodológico, transversal, com pacientes com câncer em instituição hospitalar filantrópica brasileira. Utilizaram-se instrumentos sociodemográficos e clínicos, EORTC QLQ-C30, EORTC QLQ-INFO25 e Supportive Care Needs Survey - Short Form 34. Análise ocorreu utilizando coeficientes alfa de Cronbach, correlação intraclasse, teste-reteste e análise fatorial exploratória. Resultados: participaram 128 respondentes. O coeficiente alfa de Cronbach foi de 0,85. O teste-reteste obteve p-valor=0,21. Na análise fatorial, foi excluído um item. A satisfação da informação recebida foi de 74%, com três domínios com médias inferiores a 70%. Nas questões abertas, evidenciou-se maior desejo por informações. Conclusões: evidências de validação foram obtidas com confiabilidade, consistência e estabilidade do instrumento. Os respondentes demonstraram satisfação com as informações recebidas.

The association of having a monitoring or blunting coping style with psychological distress, health-related quality of life and satisfaction with healthcare in gastrointestinal stromal tumour (GIST) patients

Background There are two main coping styles regarding information seeking under medical threat; monitoring (information-seeking) and blunting (information-avoiding). The aim of this study is to (1) determine factors associated with a monitoring or blunting coping style in gastro-intestinal stromal tumour (GIST) patients and (2) investigate its association with psychological distress, cancer-related concerns, health-related quality of life and satisfaction with healthcare. Methods In a cross-sectional study, Dutch GIST patients completed the shortened version of the Threatening Medical Situations Inventory to determine their coping style, the Hospital Anxiety and Depression Scale, Cancer Worry Scale, EORTC QLQ-C30 and part of the EORTC QLQ-INFO25. Results A total of 307 patients were classified as blunters (n = 175, 57%) or monitors (n = 132, 43%). Coping style was not associated with tumour or treatment variables, but being a female (OR 2.5; 95%CI 1.5–4.1; p= <.001) and higher educated (OR 5.5; 95%CI 2.5–11.9, p= <.001) were associated with higher odds of being a monitor. Monitors scored significantly lower on emotional functioning (mean = 86.8 vs mean = 90.9, p=.044), which is considered a trivial difference, more often experienced severe fear of cancer recurrence or progression (53.0% vs 37.7%, p=.007), and had more concerns about dying from GIST in the future (60.6% vs 47.4%, p=.025). Compared to blunters, monitors were less satisfied with the received healthcare and information, and would have liked to receive more information. Conclusion GIST patients with a monitoring coping style experience a higher emotional burden. Additionally, monitors exhibit a greater need for information. Although this need for information could potentially result in fears and concerns, recognising it may also create an opening for tailored communication and information.

Perception of information to Swedish melanoma patients in routine clinical practice \u2013 a cross-sectional survey

BackgroundComprehensible, relevant information empowers patients, allowing them to take an active part in their care. We aim to investigate how Swedish melanoma patients perceive information provided in routine clinical practice and explore the correlation between satisfaction with information, symptoms and functioning scales, and quality of life.MethodsA cross-sectional study where EORTC QLQ-C30, EORTC QLQ-INFO25 and EQ-5D-3L questionnaires were sent to 1213 patients by post and 792 responded (65%).ResultsOnly 0.5% reported that they wished to have received less information. The amount of information received and the satisfaction with that information was age-dependent, where older patients reported receiving less information than younger patients. Middle-aged patients were more satisfied with the information compared to both younger and older patients. The perception of having received sufficient information correlated negatively with anxiety. Higher satisfaction with the information also correlated positively with scores for functioning scales and negatively with degree of symptoms. No difference was perceived in information levels between disease stage apart from the scale “information about other services”, where patients with more severe disease reported receiving more information. Men and women reported equal satisfaction concerning the information received.ConclusionsPatients lack sufficient information and age affects the perception of it. It is of utmost importance to tailor the information to suit the individual needs of a given patient, as satisfaction with the information received correlates with the patient’s well-being.

P55.03 Results of The First Survey Using EORTC QLQ INFO25 on Information Acquisition and Satisfaction of Lung Cancer Patients in Japan

The Japanese Lung Cancer Society published its Lung Cancer Guidebook for Patients (the "Guidebook") in November 2019. Although the provision of information related to diagnosis and treatment by society is considered necessary for patients, no previous reports have scientifically examined the guidebook's usefulness. Although there is a lot of medical information provided by professionals for patients, we thought it was essential from an academic perspective to evaluate whether patients are delighted with this information in a quantified form. Since quantified data would help future revisions of the guidebook, we conducted the first questionnaire survey on satisfaction with medical information in Japan. We conducted a web-based questionnaire to clarify the guidebook's role in obtaining information for lung cancer patients using the EORTC QLQ-INFO 25, an international evaluation method. We calculated EORTC QLQ C30 and INFO25 scores to analyze the satisfaction level with the information patients received about their disease. Readers and non-readers of the guidebook were stratified in the analysis. Patients were asked to participate in this survey through patient associations and the Lung Cancer Society. Of 332 patients (110 males and 222 females), 284 (86%) completed the questionnaire. One hundred seventy patients participated in the patient group, and 96 (29%) used the guidebook. The most common age group among the questionnaire respondents was 55-59 years old, which is considered a relatively young population among Japan's lung cancer patients. We asked the source of medical information. The most significant number of patients received notification from the Internet, followed by their doctor, and then from patient groups. The EORTC QLQ C30 scores for readers and non-readers were not statistically different, indicating no bias in the patient background regarding the quality of life between the two groups. This survey results suggested that patients who belonged to patient groups were inclined to get more information about things other than treatment. The OVERHELP score, a measure of satisfaction with medical information, was calculated and compared. We found no statistically significant difference in OVERHELP scores between the two groups of readers and non-readers. Patients who used both the Patient's Association and the Guidebook tended to rate the information as applicable (p=0.04) than those who did not use either the Patient's Association or the Guidebook. While the guidebook we published this time was in paper form, the questionnaire survey was conducted via the Internet. Therefore, a relatively large number of respondents obtained medical information from the Internet. To verify the paper-based guidebook's usefulness, we should include the patients who were not familiar with the Internet in the future. This study is the first survey using scientific methods to evaluate information provision and patient satisfaction with an academic society-led initiative. The results show that the use of patient associations and guidebooks helps obtain information and provides a basis for discussing information provision to patients with lung cancer in the future.

The Relationship Between Hope and Received Information About Cancer Among Women with Breast Cancer: A Descriptive-Correlational Study

Background: In Western culture, information about different aspects of cancer is directly provided to the individual, but in Eastern culture, health professionals and families do not prefer to inform the patient from diagnosis, treatment, test results, causes of the disease, and the effect of treatment on sexual intercourse in front of patients in order to maintain their hope. Objectives: This study aimed at investigating the relationship between hope and received information about cancer (RIAC) among patients with breast cancer. Methods: Using a descriptive-correlational design, this study was conducted from July to December 2019 on 200. Patients with breast cancer were consecutively recruited from 2 hospitals affiliated with the Iran University of Medical Sciences, Tehran, Iran. The participants completed a demographic and clinical characteristics questionnaire, the European Organization of Research and Treatment of Cancer Quality of Life Information module (EORTC QLQ-INFO25), and the Herth hope index. Results: The response rate was 100% and participants’ mean age was 49.0 ± 10.33. The mean scores of participants’ RIAC and hope were 40.17 ± 11.52 (in the possible range of 0 - 100) and 36.77 ± 4.61 (in the possible range of 12 - 48), respectively. The mean score of hope had significant positive relationships with the mean score of RIAC (r = 0.305; P &lt; 0.001), and educational level (P = 0.004). Moreover, the mean score of RIAC had a significant positive relationship with educational level (0.049). Conclusions: Greater RIAC is associated with greater hope among patients with breast cancer. Therefore, healthcare providers need to establish effective communication with these patients and provide them with necessary education and information in order to promote their engagement in care plans, improve their self-efficacy, and boost their hope.

MO16-3 Results of the first survey using EORTC QLQ INFO25 on information acquisition and satisfaction of lung cancer patients

MO16-3 Results of the first survey using EORTC QLQ INFO25 on information acquisition and satisfaction of lung cancer patients

The perception of the information received from the doctor. A study on 103 onco-hematological patients with metastatic disease.

The aim of the study was to evaluate the perception that onco-hematological patients with metastatic disease have regarding the information received on their disease and treatment. Method. EORTC QLQ-INFO25 was administered anonymously to 103 patients.&#x0D; Results. 69% of patients were satisfied and 76% rate the information received very useful. More than half of the sample is not satisfied with the information on the effects of therapy on social and family life (53%), the effects of therapy on sexual activity (73%), the possibility of receiving extra-hospital care (78%), the rehabilitation services (81%), how to manage the disease at home (56%), the professional psychological support (69%). Overall, 46% would have preferred to receive more information, and 2% less. Discussion. The responses show that the greatest satisfaction is for the areas of purely medical relevance (information on the disease, information on medical investigations and information on the therapy carried out). Information by the doctor becomes deficient, from the patient's point of view, for those thematic areas that doctors did not consider to be their competence. Conclusion. Our data shows the lack of exchange between doctor and patient, in both directions and highlighted the need for training doctors on communication skills on psycho-social issues and quality of life concerns.

A Chatbot Versus Physicians to Provide Information for Patients With Breast Cancer: Blind, Randomized Controlled Noninferiority Trial.

BackgroundThe data regarding the use of conversational agents in oncology are scarce.ObjectiveThe aim of this study was to verify whether an artificial conversational agent was able to provide answers to patients with breast cancer with a level of satisfaction similar to the answers given by a group of physicians.MethodsThis study is a blind, noninferiority randomized controlled trial that compared the information given by the chatbot, Vik, with that given by a multidisciplinary group of physicians to patients with breast cancer. Patients were women with breast cancer in treatment or in remission. The European Organisation for Research and Treatment of Cancer Quality of Life Group information questionnaire (EORTC QLQ-INFO25) was adapted and used to compare the quality of the information provided to patients by the physician or the chatbot. The primary outcome was to show that the answers given by the Vik chatbot to common questions asked by patients with breast cancer about their therapy management are at least as satisfying as answers given by a multidisciplinary medical committee by comparing the success rate in each group (defined by a score above 3). The secondary objective was to compare the average scores obtained by the chatbot and physicians for each INFO25 item.ResultsA total of 142 patients were included and randomized into two groups of 71. They were all female with a mean age of 42 years (SD 19). The success rates (as defined by a score >3) was 69% (49/71) in the chatbot group versus 64% (46/71) in the physicians group. The binomial test showed the noninferiority (P<.001) of the chatbot’s answers.ConclusionsThis is the first study that assessed an artificial conversational agent used to inform patients with cancer. The EORTC INFO25 scores from the chatbot were found to be noninferior to the scores of the physicians. Artificial conversational agents may save patients with minor health concerns from a visit to the doctor. This could allow clinicians to spend more time to treat patients who need a consultation the most.Trial RegistrationClinicaltrials.gov NCT03556813, https://tinyurl.com/rgtlehq

Evaluation of the information given to patients undergoing total pharyngolaryngectomy and quality of life: a prospective multicentric study.

Providing cancer patients with adequate information is essential to their confidence and satisfaction regarding medical care. The aims of this study were to evaluate the information given to patients undergoing total pharyngolaryngectomy (TPL) as well as the evolution and predictors of patient quality of life (QoL). We conducted a prospective multicentric study on patients undergoing TPL for a locally advanced laryngeal/hypopharyngeal cancer. All patients completed the EORTC QLQ-INFO25, QLQ-C30, and QLQ-H&N35 questionnaires, before and after surgery. This study enrolled 46 patients. Between the pre- and post-therapeutic periods, we observed no significant changes in the global QLQ-INFO25 and QLQ-C30 scores. However, we found a significant deterioration in 4 QLQ-INFO25 scales/items and in social functioning, as well as an increase of sense, speech, and social contact problems. N-stage and professional activity were significant predictors of preoperative QLQ-INFO25 scores. Younger age was significantly associated with financial difficulties, whereas professional activity and lower education level were significant predictors of xerostomia and swallowing problems, respectively. In patients undergoing TPL, we observed significant changes in QLQ-INFO25 scores between the pre- and post-treatment periods and, particularly, a deterioration of patient satisfaction with the information received. Several clinical factors were identified as significant predictors of QLQ-INFO25 and QoL scores.

Initial breast cancer consult: Improving satisfaction and impact on distress.

e18284 Background: Goals of this performance improvement project were to: (1) determine the impact of initial breast cancer consultation on distress and number of reported problems as measured by the NCCN Distress Thermometer and Problem List (DT and PL) questionnaire and to: (2) explore the relationship between pre-consult DT and PL scores and patients’ satisfaction with information received during the consult as measured by the EORTC QLQ-INFO25. Methods: (1) Immediately prior to, and after, initial consult with the breast cancer surgeon, 59 convenience-sampled women completed NCCN DT and PL questionnaires. (2) They then completed an EORTC QLQ-INFO25 questionnaire designed to measure information satisfaction. Participants were placed in quartile groups based on DT score and, likewise, grouped based on number of reported problems on the PL. Quartile groups were then analyzed to determine scale satisfaction with the information provided. Results: (1) Both DT and PL pre-post changes were significantly positive (DT: M = 5.4, SD = 3.0 versus M = 3.6, SD = 2.8; t-test p&lt; .000); (PL: M = 5.3, SD = 4.4 versus M = 3.7, SD = 4.3; t-test p&lt; .000). Except for the INFO25 RECLESS scale (less information desired), lower scores are better. (2a.) Generally, high distress and problems reported (i.e., scores increase), guarantees lower information satisfaction. (2b.) With one exception, the quartile range for each scale was consistently small. (2c.) Score trajectories for both DT and PL quartiles over the scales were similar. Conclusions: Although data suggests current consultation processes are significantly effective, there is room for satisfaction improvement. (2a.) Providers who continue to give the DT and PL prior to a consult, must ensure information satisfaction to pre-consult DT and PL high scorers. (2b.) Similar quartile scores for each scale suggests that individually tailoring the consultation based on pre-consult DT or PL scores alone (without satisfaction improvement efforts) may have minimal benefits. (2c.) Consult satisfaction improvement efforts should focus on the following scales: INFOCD (information on CD/tape/video); RECMORE (more information wanted); INFOTHSE (other services); INFOHELP (things you can do to help yourself get well); INFODIFP (different places of care); INFOTREAT (treatments), and; INFODIS (the disease).

QIM19-144: Health-Related Quality of Life and Stress Level in Patients After Thyroid Resection Due to Cancer Depends on Patients’ Knowledge About Their Disease and Treatment Plan: Preliminary Results

Background: Relevant information is a prerequisite for patients to acquire enough knowledge to enable them to be actively involved in shared decision making, to comply with the treatment plan, and to understand what are potential benefits and side-effects of proposed therapy. Aim: The aim of this prospective, longitudinal study was to investigate whether cancer patients’ level of knowledge about their disease and treatment was associated with their health-related quality of life (HRQOL), particularly stress level. Patients and Methods: From October 2017 till September 2018, 41 patients aged 26–69 (median, 42) years referred for curative thyroidectomy were included into the study. EORTC QLQ-INFO25 questionnaire was used to measure level of patients’ knowledge about their disease and treatment, while thyroid-specific HRQOL was measured using Polish version of ThyPRO questionnaire and stress level by COPE Inventory. Assessments were done directly before the surgery (T1), 3 months after (T2), and 6 months after the treatment (T3). Results: The information about the disease (T1: 39.2, T2: 47.6, T3: 52.8; P=.024), information about treatment (T1: 27.2, T2: 42.6, T3: 60.8; P&lt;.001), information about what patients can do to help themselves (T1: 22.6, T2: 39.4, T3: 52.2; P=.037), and satisfaction with the received information (T1: 32.6, T2: 41.0, T3: 49.7; P=.049) increased significantly during the study period. Moreover, the proportion of patients who wished they had received more information decreased from 59.4% at T1 to 22.8% at T3 (P&lt;.001). Almost all of HRQOL domain scores were increasing in the consecutive time points with respect to role-physical (T1: 72.7, T2: 79.2, T3: 80.7; P=.003), role-emotional (T1: 77.6, T2: 82.8, T3: 88.9; P=.001), general health (T1: 52.7, T2: 60.2, T3: 63.4; P&lt;.001), physical functioning (T1: 69.7, T2: 77.8, T3: 79.4; P=.011), social functioning (T1: 82.7, T2: 88.9, T3: 89.4; P=.047), and vitality (T1: 69.3, T2: 72.8, T3: 79.9; P&lt;.001). Based on COPE Inventory, from the relative scores on various coping strategies in each time point, the 5 most common coping strategies adopted were active coping, planning, suppression of competing activities, focus on emotions, and positive reinterpretation and growth. There was significant correlation between EORTC QLQ-INFO25, ThyPRO, and COPE Inventory, in particular study time point (P&lt;.001). Conclusions: Patients’ knowledge increased significantly during the study period, and they reported that they felt better informed and were more satisfied with the information. This significantly influenced improvement of HRQOL and stress reduction. Psychological outcome must be considered as important measurement assessing treatment effect.

Quality of Life of Egyptian Cancer Patients in Relation With the Types and Quality of Information Given

Background: The concept of quality of life (QOL) refers to the ability to enjoy normal life activities; it is a complex combination of satisfactory functioning in essential four core domains — physical, psychological/emotional, social and quality of life is an important aspect of care in the clinical setting; nurses can improve patients´ quality of life by ensuring they are competent in daily practice, and by giving patients a high quality holistic care based on safe, effective intervention and providing required information. Aim: To evaluate the quality of life of cancer patients in relation to different treatment modalities and evaluate the impact of the information given on the quality of life. Methods: A convenient sample of adult cancer patients recruited from a university hospital, Cairo, Egypt. Data were collected through self-administered questionnaire or patient structured interview. Tools used: EORTC QLQ-C30 (Version 3) and QLQ-INFO25. Data analysis includes descriptive statistics and exploration of relationships between key variables; physical, emotional, social well-being, type of treatment, information given and quality of life. Results: Preliminary results revealed significant correlation between fatigue, emotional disturbance and quality of life. Lack of information is also correlated with low quality of life. Patients expressed their needs for more clarification about treatment, coping with disease and future consideration. Conclusion: Quality of life should be assessed frequently by nurses throughout treatment phases to identify patients at risk. Nurses also should emphasize on proper patients teaching and counseling to promote physical psychosocial balance and improve quality of life.

PS01.122: LONG-TERM QUALITY OF LIFE IN PATIENTS AFTER MCKEOWN VERSUS IVOR LEWIS ESOPHAGECTOMY

Abstract Background Treatment of distal esophageal and gastroesophageal junction (GEJ) cancers is challenging. The therapy for these cancers mainly consist of (neo)adjuvant chemo(radio)therapy and surgery. There are different surgical approaches possible for these patients: transthoracic esophagectomy with a cervical anastomosis (McKeown) or an intrathoracic anastomosis (Ivor Lewis). However, there is no evidence which is the preferred approach in terms of oncology, morbidity and quality of life. The aim of this study was to investigate the difference in the long-term quality of life in patients undergoing McKeown (McK) versus Ivor Lewis (IL) esophagectomy in a tertiary referral center. Methods Consecutive patients after either McK or IL for distal oesophagus, GEJ or proximal gastric carcinoma were asked to fill in EORTC QLQ-C30 and EORTC QLQ-OG25 questionnaires to evaluate quality of life during the period of January 2014 – December 2017. EORTC QLQ-INFO25 quality of life questionnaire was used to evaluate information needs of patients in both groups. All answers with a long follow up (&gt; 1 year) after surgery were analysed. Results In the McK group 62 and in the IL group 110 patients were included. Median follow up was 3 years for McK and 2 years for IL. Median age was 62,4 years. Cognitive functioning was significantly better in the IL group (P = 0.038). Complaints of dyspnoe (P = 0.004) and dysphagia (P = 0.028) were significantly higher in the McK group. Patients after IL had significantly less trouble with eating with others (P = 0.003), trouble with taste (P = 0.032), chocking when swallowing (P = 0.022) and trouble with talking (P = 0.038). There was no significant difference in global health status or physical, role, social or emotional functioning. Furthermore there was no difference in symptoms of nausea, fatigue, pain, discomfort or information scores between McK and IL groups. Conclusion After a follow up of &gt; 1 year no differences in global health status or physical, role, social or emotional functioning scales between McK and IL esophagectomy were found. However, significant differences in some symptom scales and cognitive functioning were observed in favor of IL. These findings should be taken into consideration when deciding between a McK and IL esophagectomy in patients where both procedures are feasible. Disclosure All authors have declared no conflicts of interest.

A prospective observational study to assess clinical decision-making, prognosis, quality of life and satisfaction with care in patients with relapsed/refractory multiple myeloma: the CLARITY study protocol

BackgroundTreatment decision-making in patients with relapsed/refractory multiple myeloma (RRMM) is challenging for a number of reasons including, the heterogeneity of disease at relapse and the number of possible therapeutic approaches. This study broadly aims to generate new evidence-based data to facilitate clinical decision-making in RRMM patients. The primary objective is to investigate the prognostic value of patient self-reported fatigue severity for overall survival.MethodsThis multicenter prospective observational study will consecutively enroll 312 patients with multiple myeloma who have received at least 1 prior line of therapy and are considered as RRMM according to the International Myeloma Working Group (IMWG) criteria. Eligible RRMM participants will be adults (≥ 18 years old) patients and will be enrolled irrespective of comorbidities and performance status. At the time of study inclusion, data to calculate the frailty score are to be available. Patients will be followed up for 30 months and patient-reported outcome (PRO) assessment is planned at baseline and thereafter at 3, 6, 12, and 24 months. The following PRO validated questionnaires will be used: the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), the EORTC QLQ-MY20 and the EORTC QLQ-INFO25. Satisfaction with care and preference for involvement in treatment decisions will also be evaluated. Clinical, laboratory and treatment related information will be prospectively collected in conjunction with pre scheduled PRO assessments. Cox regression analyses will be used to assess the prognostic value of baseline fatigue severity (EORTC QLQ-C30) and other patient-reported health-related quality of life parameters.DiscussionClinical decision-making in RRMM is a challenge and outcome prediction is also an important aspect to enhance personalized treatment planning. Given the paucity of PRO data in this population, this prospective observational study aims to provide novel information that may facilitate patients’ management in routine practice.Trial registrationThis trial is registered as identifier NCT03190525.

Association between information provision and supportive care needs among ovarian cancer survivors: A cross‐sectional study from the PROFILES registry

To examine the association between satisfaction with perceived information provision during diagnosis and treatment and supportive care needs in ovarian cancer survivors. In 2012, women (n=348) diagnosed with ovarian cancer, as registered between 2000 and 2010 in the Netherlands Cancer Registry, received a questionnaire including questions on the perceived level of, and satisfaction with, information received (EORTC QLQ-INFO25) and supportive care needs (Cancer Survivors' Unmet Needs Measure). Of 348 women, 191 (55%) responded. Of all participants, 35% were not satisfied (n=65) with the perceived amount of information received. Participants who were satisfied with the amount of information reported significantly higher levels of perceived information on disease, medical tests, treatment, and other services. Patients not satisfied with information provision had a higher total number of needs and a higher number of unmet needs than women satisfied with information provision. Multivariable linear regression analysis showed that satisfaction with information provision was negatively associated with the total number of unmet needs (β=-0.20, P=.03) after adjustment for potential confounding clinical and sociodemographic factors. Ovarian cancer survivors satisfied with the information provision during treatment reported fewer unmet needs during survivorship. Optimization of information provision for ovarian cancer patients during initial diagnosis and treatment may contribute to a decrease in unmet needs during survivorship.

Cancer patients\u2019 knowledge about their disease and treatment before, during and after treatment: a prospective, longitudinal study

BackgroundKnowledge about disease and treatment is necessary before patients can consent to treatment. One of the few established instruments for evaluating whether sufficient information has been provided, is the EORTC QLQ-INFO25 questionnaire which was developed to measure how patients perceive information. The aim of this study was to investigate whether cancer patients’ level of knowledge about their disease and treatment was associated with their perception of and satisfaction with the information.MethodsBreast cancer patients referred for adjuvant chemotherapy and prostate cancer patients referred for curative radiotherapy were included. Level of knowledge about their disease and treatment was measured using study-specific questionnaires. Patients’ perception of and satisfaction with the received information was assessed using EORTC QLQ-INFO25. Assessments were done before the first consultation with an oncologist (T1), after the consultation (T2) and 8 weeks after start of treatment (T3).ResultsNinety eight patients were enrolled. Patients with higher education, daily Internet access and in paid employment had the highest baseline knowledge scores. The mean knowledge score increased significantly (T1: 16.4; T2: 20.8; T3: 21.3; p < 0.001.). During the same period, the patients reported on the INFO25 a significant, positive increase in how much information they had received, and that they were more satisfied with the information.ConclusionsPatients’ knowledge increased significantly during the study period, and they reported that they felt better informed and were more satisfied with the information, suggesting that EORTC QLQ-INFO25 might be used to evaluate cancer patients’ level of knowledge about their disease and treatment.Trial registrationClinicalTrials.gov identifier: NCT01699672. Date of registration: September 21, 2012.