Reasons for fear of cancer recurrence after endoscopic treatment of T1 esophageal adenocarcinoma. A semi-structured interview study.

Prior research has shown that patients with early Barrett's neoplasia treated endoscopically report at least the same level of fear for cancer recurrence as patients treated surgically for a more advanced disease stage. The aim of this qualitative study was to gain insight into the reasons why endoscopically treated patients fear or not fear cancer recurrence. Patients treated endoscopically for T1 esophageal adenocarcinoma participated in a semi-structured interview. Patients were asked open questions about their fear of cancer recurrence and presented an a priori list of possible reasons for experiencing or not experiencing fear of cancer recurrence. Data saturation was reached with 12 patients who added 7 new reasons. Reasons that induced fear of cancer recurrence were related to physical symptoms, if cancer was diagnosed as an accidental finding and experiences with cancer in close relations. Endoscopic surveillance was mentioned as a reason for not experiencing fear of cancer recurrence. Patients reduced their fear of cancer recurrence by talking to close relations and seeking distraction. Caregivers reduced patients fear of cancer recurrence by giving adequate information and by showing photo of the treatment and the results of the treatment. According to patients with early Barrett's neoplasia, receiving comprehensible information about the risk of recurrence and potential symptoms that may or may not be indicative of cancer recurrence, and continuing endoscopic surveillance, reduced fear of cancer recurrence. We recommend that healthcare providers discuss fear of cancer recurrence with their patients to enable tailoring information provision to their needs.

Chemotherapy-Induced Peripheral Neuropathy in Patients With Gastroesophageal Cancer.

BACKGROUND: Chemotherapy for various stages of gastroesophageal cancer (GEC) is often neurotoxic. Chemotherapy-induced peripheral neuropathy (CIPN) impairs health-related quality of life (HRQoL). This study investigates the incidence and severity of CIPN and its association with HRQoL in patients with GEC. PATIENTS AND METHODS: Patients who received chemoradiotherapy or chemotherapy for GEC were identified from the Netherlands Cancer Registry. Patient-reported data (measured using the EORTC QLQ-CIPN20 and EORTC QLQ-C30) were collected through the Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients (POCOP) at baseline and at 3, 6, 9, 12, 18, and 24 months after treatment initiation. Linear mixed effects models were constructed to assess CIPN and the correlation between CIPN and HRQoL was analyzed using Spearman's correlation. RESULTS: A total of 2,135 patients were included (chemoradiotherapy: 1,593; chemotherapy with curative intent: 295; palliative chemotherapy: 247). In all 3 treatment groups, CIPN significantly increased during treatment (adjusted mean score of CIPN at 6 months: chemoradiotherapy, 8.3 [baseline: 5.5]; chemotherapy with curative intent, 16.0 [baseline: 5.6]; palliative therapy, 25.4 [baseline: 10.7]). For chemoradiotherapy, the adjusted mean score continued to increase after treatment (24 months: 11.2). For chemotherapy with curative intent and palliative therapy, the adjusted mean score of CIPN decreased after treatment but did not return to baseline values. CIPN was negatively correlated with HRQoL in all treatment groups, although significance and strength of the correlation differed over time. CONCLUSIONS: Because of the poor prognosis of GEC, it is essential to consider side effects of (neurotoxic) treatment. The high prevalence and association with HRQoL indicate the need for early recognition of CIPN.

Information Needs in Patients with Potentially Curable Gastroesophageal Cancer.

INTRODUCTION: Gastroesophageal cancer patients' information needs remain understudied, despite their complex treatment trajectories. METHODS: This study examined the (i) information needs of patients with or without postoperative complications, (ii) information needs of male and female patients, and (iii) the association between information needs and health-related quality of life (HR-QoL) following gastroesophageal cancer surgery. Patients completed the EORTC-QLQ-INFO25, QLQ-C30, and QLQ-OG25 questionnaires before and after curative surgery. Five information needs domains were investigated: information about the disease, about treatments, about medical tests, about things patients can do to help themselves, and overall helpfulness. Additionally, HR-QoL domains global health status, eating restrictions, and anxiety were explored. RESULTS: A total of 132 patients completed the questionnaires at baseline, 216 patients at 6-12 months, 184 patients at 18-24 months, and 163 patients at 3-5 years post-operation. There were no significant differences in information needs between patients with or without complications or between male and female patients. Patients with a higher global health status found the information more helpful at 6-12 months (p < 0.001), 18-24 months (p < 0.001), and 3-5 years (p < 0.001) postoperatively, as did patients who experienced more anxiety at 18-24 months (p = 0.009) and 3-5 years (p < 0.001). CONCLUSION: Gastroesophageal cancer patients, regardless of sex or postoperative complications, have consistent information needs, yet those with higher global health status and elevated anxiety levels find the information particularly helpful, emphasizing the importance of tailored communication strategies.

Postoperative quality of life and pain after upper hemisternotomy and conventional median sternotomy for aortic valve replacement: results of a randomized clinical trial.

OBJECTIVES: Surgical aortic valve replacement through conventional sternotomy yields excellent results. Minimally invasive techniques are deemed equally safe and serve as a viable and less traumatic alternative. However, it is unclear how both surgical techniques affect patient-reported outcomes. The objective of this trial is to compare postoperative cardiac-related quality of life and postoperative pain after upper hemisternotomy and conventional surgical aortic valve replacement. METHODS: In this single-centre, open-label, investigator-initiated randomized clinical trial, patients were randomized to upper hemisternotomy or conventional full median sternotomy. Patients unable to undergo randomization were monitored prospectively (registry group). Primary outcome was cardiac-specific quality of life, measured with the Kansas City Cardiomyopathy Questionnaire up to 1 year postoperatively. RESULTS: Patients undergoing upper hemisternotomy had a significantly higher physical limitation domain score across all postoperative time points than patients undergoing conventional surgical aortic valve replacement (estimated mean difference 2.12 points; P = 0.014). Patients undergoing upper hemisternotomy were more likely to have a pain score <30 the first 2 days postoperatively than patients undergoing conventional surgical aortic valve replacement (odds ratio 2.63; P = 0.007). This was associated with reduced opioid analgesic intake. Postoperative surgical outcome did not differ between both groups. CONCLUSIONS: Surgical aortic valve replacement through both conventional sternotomy and upper hemisternotomy resulted in clinically similar and important improvements in quality of life, with a small advantage for upper hemisternotomy, while there was no compromise in safety.

Exploring resonance theory and uncontrollability during co-creative art making: A qualitative study among cancer patients.

PURPOSE: Co-creation, characterised by artists and patients creating a joint work of art, may support patients with the integration of life events, such as living with cancer, into their life story. In the process of co-creation, resonance relationships between patients, artists and material may evolve that support such integration. Using the framework of resonance theory, we aim to investigate if and how patients move through the three phases of resonance during a process of co-creation and explore the role of uncontrollability in this process. METHODS: Ten patients who received cancer treatment with palliative intent completed co-creation processes, which were audio recorded. These recordings were imported in Atlas-Ti and analysed by applying content analysis. We searched for the three phases of resonance, Being affected, touched and moved; Self-efficacy and responding; Adaptive transformation. We additionally searched for signs of uncontrollability. RESULTS: Patients used 4-8 sessions (median 5 sessions) with a duration 90-240 min per session (median duration 120 min). We found that patients move through the three phases of resonance during co-creation processes. Uncontrollability both presents a challenge and an invitation to integrate experiences of contingency into one's life narrative. Patients express self-recognition and the experience of contingency in their work of art. CONCLUSIONS: Integration of experiences of contingency into a life narrative can be supported by the process of co-creation of art, which invites patients to relate to their illness, their environment and themselves. The phases of resonance in combination with uncontrollability as a continuously present factor, provide a means to both study and support the integration of experiences of contingency into the life narrative.

Network analysis used to investigate the interplay among somatic and psychological symptoms in patients with cancer and cancer survivors: a scoping review.

PURPOSE: Patients with cancer often experience multiple somatic and psychological symptoms. Somatic and psychological symptoms are thought to be connected and may reinforce each other. Network analysis allows examination of the interconnectedness of individual symptoms. The aim of this scoping review was to examine the current state of knowledge about the associations between somatic and psychological symptoms in patients with cancer and cancer survivors, based on network analysis. METHODS: This scoping review followed the five-stage framework of Arksey and O'Malley. The literature search was conducted in May, 2023 in PubMed, APA PsycINFO, Embase Cochrane central, and CINAHL databases. RESULTS: Thirty-two studies were included, with eleven using longitudinal data. Seventeen studies reported on the strength of the associations: somatic and psychological symptoms were associated, although associations among somatic as well as among psychological symptoms were stronger. Other findings were the association between somatic and psychological symptoms was stronger in patients experiencing more severe symptoms; associations between symptoms over time remained rather stable; and different symptoms were central in the networks, with fatigue being among the most central in half of the studies. IMPLICATIONS FOR CANCER SURVIVORS: Although the associations among somatic symptoms and among psychological symptoms were stronger, somatic and psychological symptoms were associated, especially in patients experiencing more severe symptoms. Fatigue was among the most central symptoms, bridging the somatic and psychological domain. These findings as well as future research based on network analysis may help to untangle the complex interplay of somatic and psychological symptoms in patients with cancer.

The expression of ultimate life goals in co-creative art processes with palliative cancer patients.

BACKGROUND: Co-creation, characterized by artists and patients creating a joint work of art, may support patients with the integration of disruptive life events into their life story, such as living with cancer. Focusing on experiences of contingency and life goals could support this process. The research questions are: (1) 'how are patient's ultimate life goals and experiences of contingency expressed in the work of art as created in a process of co-creation?'; (2) 'how do the four phases of integration of experiences of contingency unfold during co-creation?' METHODS: Ten patients who were in a palliative stage of cancer treatment completed co-creation processes. Audio recordings of these co-creation processes were imported in Atlas-Ti and analysed by applying directed content analysis. We searched for life goals and experiences of contingency in the four phases of co-creation; Art communications, Element compilation, Consolidation, Reflection. RESULTS: Patients used 4-8 sessions (median 5 sessions) with a duration of 90-240 min each (median duration 120 min). All patients expressed their experience of contingency and their ultimate life goals within the four phases of co-creation and in their work of art. A case description is presented illustrating the co-creation process. CONCLUSIONS: During co-creation, patients move through four phases in which experiences of contingency and ultimate life goals can be made explicit through art making and can be expressed in the work of art, supporting integration of experiences of contingency into one's life narrative.

Minimally invasive versus open pancreatoduodenectomy for pancreatic and peri-ampullary neoplasm (DIPLOMA-2): study protocol for an international multicenter patient-blinded randomized controlled trial.

BACKGROUND: Minimally invasive pancreatoduodenectomy (MIPD) aims to reduce the negative impact of surgery as compared to open pancreatoduodenectomy (OPD) and is increasingly becoming part of clinical practice for selected patients worldwide. However, the safety of MIPD remains a topic of debate and the potential shorter time to functional recovery needs to be confirmed. To guide safe implementation of MIPD, large-scale international randomized trials comparing MIPD and OPD in experienced high-volume centers are needed. We hypothesize that MIPD is non-inferior in terms of overall complications, but superior regarding time to functional recovery, as compared to OPD. METHODS/DESIGN: The DIPLOMA-2 trial is an international randomized controlled, patient-blinded, non-inferiority trial performed in 14 high-volume pancreatic centers in Europe with a minimum annual volume of 30 MIPD and 30 OPD. A total of 288 patients with an indication for elective pancreatoduodenectomy for pre-malignant and malignant disease, eligible for both open and minimally invasive approach, are randomly allocated for MIPD or OPD in a 2:1 ratio. Centers perform either laparoscopic or robot-assisted MIPD based on their surgical expertise. The primary outcome is the Comprehensive Complication Index (CCI®), measuring all complications graded according to the Clavien-Dindo classification up to 90 days after surgery. The sample size is calculated with the following assumptions: 2.5% one-sided significance level (α), 80% power (1-ß), expected difference of the mean CCI® score of 0 points between MIPD and OPD, and a non-inferiority margin of 7.5 points. The main secondary outcome is time to functional recovery, which will be analyzed for superiority. Other secondary outcomes include post-operative 90-day Fitbit™ measured activity, operative outcomes (e.g., blood loss, operative time, conversion to open surgery, surgeon-reported outcomes), oncological findings in case of malignancy (e.g., R0-resection rate, time to adjuvant treatment, survival), postoperative outcomes (e.g., clinically relevant complications), healthcare resource utilization (length of stay, readmissions, intensive care stay), quality of life, and costs. Postoperative follow-up is up to 36 months. DISCUSSION: The DIPLOMA-2 trial aims to establish the safety of MIPD as the new standard of care for this selected patient population undergoing pancreatoduodenectomy in high-volume centers, ultimately aiming for superior patient recovery. TRIAL REGISTRATION: ISRCTN27483786. Registered on August 2, 2023.

Late Toxicity and Health-Related Quality of Life Following Definitive Chemoradiotherapy for Esophageal Cancer: A Systematic Review and Meta-analysis.

PURPOSE: Definitive chemoradiotherapy (dCRT) is a treatment option with curative intent for patients with esophageal cancer that could result in late toxicities and affect health-related quality of life (HRQoL). This study aimed to review the literature and perform a meta-analysis to investigate the effect of dCRT on late toxicities and HRQoL in esophageal cancer. METHODS AND MATERIALS: A systematic search was performed in MEDLINE, EMBASE, and PsychINFO. Prospective phase II and III clinical trials, population-based studies, and retrospective chart reviews investigating late toxicity or HRQoL after dCRT (≥50 Gy) were included. The HRQoL outcomes were analyzed using linear mixed-effect models with restricted cubic spline transformation. Any HRQoL changes of ≥10 points were considered clinically relevant. The risk of toxicities was calculated using the number of events and the total study population. RESULTS: Among 41 included studies, 10 assessed HRQoL and 31 late toxicity. Global health status remained stable over time and improved after 36 months compared with baseline (mean change, +11). Several tumor-specific symptoms, including dysphagia, eating restrictions, and pain, improved after 6 months compared with baseline. Compared with baseline, dyspnea worsened after 6 months (mean change, +16 points). The risk of any late toxicity was 48% (95% CI, 33%-64%). Late toxicity risk of any grade for the esophagus was 17% (95% CI, 12%-21%), pulmonary 21% (95% CI, 11%-31%), cardiac 12% (95% CI, 6%-17%), and any other organ 24% (95% CI, 2%-45%). CONCLUSIONS: Global health status remained stable over time, and tumor-specific symptoms improved within 6 months after dCRT compared with baseline, with the exception of dyspnea. In addition, substantial risks of late toxicity were observed.

Minimally important differences for interpreting EORTC QLQ-C30 change scores over time: A synthesis across 21 clinical trials involving nine different cancer types.

INTRODUCTION: Early guidelines for minimally important differences (MIDs) for the EORTC QLQ-C30 proposed ≥10 points change as clinically meaningful for all scales. Increasing evidence that MIDs can vary by scale, direction of change, cancer type and estimation method has raised doubt about a single global standard. This paper identifies MID patterns for interpreting group-level change in EORTC QLQ-C30 scores across nine cancer types. METHODS: Data were obtained from 21 published EORTC Phase III trials that enroled 13,015 patients across nine cancer types (brain, colorectal, advanced breast, head/neck, lung, mesothelioma, melanoma, ovarian, and prostate). Anchor-based MIDs for within-group change and between-group differences in change over time were obtained via mean change method and linear regression, respectively. Separate MIDs were estimated for improvements and deteriorations. Distribution-based estimates were derived and compared with anchor-based MIDs. RESULTS: Anchor-based MIDs mostly ranged from 5 to 10 points. Differences in MIDs for improvement vs deterioration, for both within-group and between-group, were mostly within a 2-points range. Larger differences between within-group and between-group MIDs were observed for several scales in ovarian, lung and head/neck cancer. Most anchor-based MIDs ranged between 0.3 SD and 0.5 SD distribution-based estimates. CONCLUSIONS: Our results reinforce recent claims that no single MID can be applied to all EORTC QLQ-C30 scales and disease settings. MIDs varied by scale, improvement/deterioration, within/between comparisons and by cancer type. Researchers applying commonly used rules of thumb must be aware of the risk of dismissing changes that are clinically meaningful or underpowering analyses when smaller MIDs apply.

Co-creative art processes with cancer patients from the artists' perspective: a qualitative study exploring resonance theory.

PURPOSE: Co-creation, characterised by artists and patients creating a joint work of art, may support patients with the integration of life events into their life story, such as living with cancer. In the process of co-creation, resonance relationships between patients, artists and material may evolve that support integration. We aim to investigate if and if so, how resonance relationships occur from the perspective of the artist. METHODS: We used the first 10 audio recordings of supervision sessions between eight artists and their two supervisors on ongoing co-creation processes with cancer patients. By conducting a qualitative template analysis in AtlasTi, we searched for the presence of resonance, as defined by its four main characteristics, Being affected, touched and moved; Self-efficacy and responding; Moments of uncontrollability; and Adaptive transformation. In addition, two case descriptions are presented. RESULTS: We found resonance relationships to be present in the studied co-creation processes where moments of uncontrollability can lead to a next step in the process of co-creation and as such form an important factor within co-creation. CONCLUSIONS: The current study suggests focus on elements of resonance relationships within co-creation, specifically practising with uncontrollability while working with art, could strengthen interventions targeting integration of life events in advanced cancer patients.

Response Shift After Cognitive Behavioral Therapy Targeting Severe Fatigue: Explorative Analysis of Three Randomized Controlled Trials.

BACKGROUND: Cognitive behavioral therapy (CBT) is an evidence-based intervention for severe fatigue. Changes in patients' fatigue scores following CBT might reflect not only the intended relief in fatigue but also response shift, a change in the meaning of patients' self-evaluation. Objectives were to (1) identify the occurrence of response shift in patients undergoing CBT, (2) determine the impact of response shift on the intervention effect, and (3) investigate whether changes in fatigue-related cognitions and perceptions, targeted during CBT, are associated with response shift. METHODS: Data of three randomized controlled trials testing the efficacy of CBT in individuals with chronic fatigue syndrome (CFS, n = 222), cancer (n = 123), and diabetes (n = 107) were re-analyzed. Fatigue severity was measured with 8 items from the Checklist Individual Strength, a valid and widely used self-report questionnaire. Structural equation modelling was applied to assess lack of longitudinal measurement invariance, as indication of response shift. RESULTS: As expected, in all three trials, response shift was indicated in the CBT groups, not the control groups. Response shift through reprioritization was indicated for the items "Physically, I feel exhausted" (CFS) and "I tire easily" (cancer, diabetes), which became less vs. more important to the measurement of fatigue, respectively. However, this did not affect the intervention effects. Some changes in cognitions and perceptions were associated with the response shifts. CONCLUSIONS: CBT seems to induce response shift through reprioritization across patient groups, but its occurrence does not affect the intervention effect. Future research should corroborate these findings and investigate whether patients indeed change their understanding of fatigue.

Clinical judgment of the need for professional mental health care in patients with cancer: a qualitative study among oncologists and nurses.

PURPOSE: In daily practice, oncologists and nurses frequently need to decide whether or not to refer a patient for professional mental health care. We explored the indicators oncologists and nurses use to judge the need for professional mental health care in patients with cancer. METHODS: In a qualitative study, oncologists (n = 8) and nurses (n = 6) were each asked to select patients who were or were not referred for professional mental health care (total n = 75). During a semi-structured interview, they reflected on their decision concerning the possible referral of the patient. Thematic analysis was used to analyze the data. RESULTS: Respondents reported using a strategy when judging whether professional mental health care was needed. They allowed patients time to adjust, while monitoring patients' psychological well-being, especially if patients exhibited specific risk factors. Risk and protective factors for emotional problems included personal, social, and disease- and treatment-related factors. Respondents considered referral for professional mental health care when they noted specific indicators of emotional problems. These indicators included lingering or increasing emotions, a disproportionate intensity of emotions, and emotions with a negative impact on a patient's daily life or treatment. CONCLUSIONS: This study identified the strategy, risk and protective factors, and the indicators of emotional problems used by oncologists and nurses when judging the need for professional mental health care in patients with cancer. IMPLICATIONS FOR CANCER SURVIVORS: Oncologists and nurses can play an important role in the identification of patients in need of professional mental health care.

Co-creative art processes with patients: A theoretical framework and qualitative study among artists.

A cancer diagnosis may be experienced as a contingent life event. Co-creation-in which artists together with patients create a work of art reflecting on aspects of the patients' life story-may be used to support patients to integrate such a contingent life event into their life story. We conducted a qualitative study in which we interviewed 10 professional artists to explore if co-creative art processes could facilitate integration of experiences of contingency in patients. Template analyses were performed in AtlasTi. We identified co-creation as a specific form of support to the process of integration of experiences of contingency. In the formation of a new life narrative, patients transcend the boundaries of their previous life narrative by changing their perspective. Self-transcendence forms a pivotal point in co-creation, which may be helpful for patients to integrate experiences of contingency into their life narratives.

Minimally important differences of EORTC QLQ-C30 scales in patients with lung cancer or malignant pleural mesothelioma - Interpretation guidance derived from two randomized EORTC trials.

OBJECTIVES: A minimally important difference (MID) is the smallest difference in quality of life (QoL) perceived as relevant by patients or clinicians. MIDs aid interpretation of QOL data in research and clinical practice. We aimed to determine MIDs for the EORTC QLQ-C30 for patients with lung cancer or malignant pleural mesothelioma. MATERIALS AND METHODS: Data were drawn from two EORTC-sponsored randomized clinical trials (RCTs): a three-arm RCT of two cisplatin-based treatments and paclitaxel plus gemcitabine in advanced non-small-cell lung cancer, and an RCT comparing cisplatin with or without raltitrexed in patients with malignant pleural mesothelioma. MIDs for interpreting within-group change and between-group differences in change over time were computed using anchor-based approaches, for improvements and deteriorations separately. Distribution-based approaches provided corroborative evidence. RESULTS: The combined data from the trials comprised 730 patients. Available data allowed us to determine 8/14 anchor-based MIDs for EORTC scales for improvements, and 9/14 MIDs for deterioration. Furthermore, we provided distribution-based estimates for all 14 QLQ-C30 scales. Most MIDs for improvements ranged between 5 and 10, for both within-group and between-group differences. Outliers were appetite loss and constipation, with MIDs up to 15 score points. MIDs were slightly larger for within-group deterioration, ranging from -5 to - 15, with the largest for Nausea/vomiting (-1 to 4) and Appetite loss (-1 to 5). MIDs for between-group differences in deterioration ranged from - 4 (Physical, Role, and Social functioning, and Global quality of life) to -9 (Nausea/vomiting, Appetite loss and Constipation). CONCLUSIONS: MIDs vary over scales and for between- versus within-group comparisons; this must be taken into account when interpreting changes. Nevertheless, the majority of MIDs range between 5 and 10 score points, in line with previously used thresholds for QLQ-C30. These findings and those from other tumor-specific MID analyses will inform a planned consensus process identifying commonalities and differences across tumor sites.

The fear of cancer recurrence and progression in patients with pancreatic cancer.

PURPOSE: It is plausible that patients with pancreatic cancer experience fear of tumor recurrence or progression (FOP). The aim of this study was to compare FOP in patients with pancreatic cancer treated with surgical resection, palliative systemic treatment, or best supportive care (BSC) and analyze the association between quality of life (QoL) and FOP and the effect of FOP on overall survival (OS). METHODS: This study included patients diagnosed with pancreatic cancer between 2015 and 2018, who participated in the Dutch Pancreatic Cancer Project (PACAP). The association between QoL and WOPS was assessed with logistic regression analyses. OS was evaluated using Kaplan-Meier curves with the log-rank tests and multivariable Cox proportional hazard analyses adjusted for clinical covariates and QoL. RESULTS: Of 315 included patients, 111 patients underwent surgical resection, 138 received palliative systemic treatment, and 66 received BSC. Patients who underwent surgical resection had significantly lower WOPS scores (i.e., less FOP) at initial diagnosis compared to patients who received palliative systemic treatment or BSC only (P < 0.001). Better QoL was independently associated with the probability of having a low FOP in the BSC (OR 0.95, 95% CI 0.91-0.98) but not in the surgical resection (OR 0.97, 95% CI 0.94-1.01) and palliative systemic treatment groups (OR 0.97, 95% CI 0.94-1.00). The baseline WOPS score was not independently associated with OS in any of the subgroups. CONCLUSION: Given the distress that FOP evokes, FOP should be explicitly addressed by health care providers when guiding pancreatic cancer patients through their treatment trajectory, especially those receiving palliative treatment or BSC.

This is what life with cancer looks like: exploring experiences of adolescent and young adults with cancer using two visual approaches.

INTRODUCTION: Talking about illness experience can be challenging for adolescents and young adults (AYAs) with cancer. Visual tools, in addition to spoken language, might make this easier, such as rich pictures and photovoice. We aimed to obtain a comprehensive view of the cancer experience of AYAs by using rich pictures and photovoice. METHODS: AYAs (18-35 years old) who had any type of cancer, or were in remission from cancer, were eligible. AYAs drew rich pictures about their experience of living with cancer and explained these during subsequent interviews. Some of the AYAs also participated in photovoice and spent two days with a photographer to make photos about their illness experience. Rich pictures and photos were first analyzed separately, using open coding, after which the identified themes were compared. RESULTS: Twelve AYAs made rich pictures (RPs), of whom seven also participated in photovoice. The two most predominant themes emerging from the data were struggles related to the future and defining one's identity. The AYAs expressed concerns for the future related to relationships, education, and employment. Relating to defining one's identity, many AYAs expressed that the cancer had a negative impact on their body- and self-image. The main themes were visible in the RPs as well as in the photovoice; however, subtle differences in sub-themes were found. CONCLUSIONS: We found that cancer has an effect on many aspects of AYAs' lives. Further research on how the identified themes play a role in the lives of AYAs with cancer is needed.

Repeated use of rich pictures to explore changes in subjective experiences over time of patients with advanced cancer.

BACKGROUND: The combination of verbal and visual tools may help unravel the experiences of advanced cancer patients. However, most previous studies have focused on a specific symptom, at only one moment in time. We recently found that a specific visual tool, originating from systems thinking, that is, rich pictures (RPs), could provide a more comprehensive view of the experiences of patients with advanced cancer. AIMS: To examine whether the repeated use of RPs can make changes in subjective experiences of patients living with advanced cancer visible over time. METHODS AND RESULTS: We performed a prospective study with a generic qualitative approach that was mostly informed by the process of grounded theory. We invited patients to make an RP twice, at the start of the study, and again after 2 months. Both RP drawing sessions were directly followed by a semi-structured interview. Patients with all types of solid tumors, above the age of 18, and with a diagnosis of advanced, incurable cancer, were eligible. Eighteen patients participated and 15 patients were able to draw an RP twice. In eight RP-sets, considerable differences between the first and second RP were noticeable. Two patterns were distinguished: (1) a change (decline or improvement) in physical health (five patients), and/or (2) a change in the way patients related to cancer (three patients). CONCLUSION: RPs are a valuable qualitative research method that can be used to explore the experiences of patients with advanced cancer, not only at a single point in time but also over time.

The impact of cancer treatment on quality of life in patients with pancreatic and periampullary cancer: a propensity score matched analysis.

BACKGROUND: The impact of pancreatic and periampullary cancer treatment on health-related quality of life (HRQoL) is unclear. METHODS: This study merged data from the Netherlands Cancer Registry with EORTC QLQ-C30 and -PAN26 questionnaires at baseline and three-months follow-up of pancreatic and periampullary cancer patients (2015-2018). Propensity score matching (1:3) of group without to group with treatment was performed. Linear mixed model regression analyses were performed to investigate the association between cancer treatment and HRQoL at follow-up. RESULTS: After matching, 247 of 629 available patients remained (68 (27.5%) no treatment, 179 (72.5%) treatment). Treatment consisted of resection (n = 68 (27.5%)), chemotherapy only (n = 111 (44.9%)), or both (n = 40 (16.2%)). At follow-up, cancer treatment was associated with better global health status (Beta-coefficient 4.8, 95% confidence-interval 0.0-9.5) and less constipation (Beta-coefficient -7.6, 95% confidence-interval -13.8-1.4) compared to no cancer treatment. Median overall survival was longer for the cancer treatment group compared to the no treatment group (15.4 vs. 6.2 months, p < 0.001). CONCLUSION: Patients undergoing treatment for pancreatic and periampullary cancer reported slight improvement in global HRQoL and less constipation at three months-follow up compared to patients without cancer treatment, while overall survival was also improved.