Patient and public involvement in oesophageal cancer survivorship research.

BACKGROUND: Good clinical research is often conducted in close collaboration between patients, the public, and researchers. Few studies have reported the development of patient and public involvement (PPI) in research outside the United States and the United Kingdom, and for patients with more aggressive cancers. The study aimed to describe and evaluate the development of PPI in oesophageal cancer survivorship research in Sweden by the use of a framework to support the process. METHODS: Oesophageal cancer survivors were recruited to a PPI research collaboration at Karolinska Institutet, Sweden. The development process was supported by the use of a framework for PPI, 'Patient and service user engagement in research'. Insights, benefits, and challenges of the process were described and discussed among the collaborators. RESULTS: The collaboration resulted in joint publications with a more patient- and family-focussed perspective. It also contributed to the development of information folders about survivorship after oesophageal cancer surgery and national conference arrangements for patients, their families, healthcare workers, and researchers. Since the PPI contributors were represented in patient organisations and care programmes, the dissemination of research results increased. Their contributions were highly valued by the researchers, but also revealed some challenges. The use of a structured framework contributed to support and facilitated the process of establishing PPI in research collaboration. CONCLUSIONS: A genuine interest in establishing PPI in research and an understanding and respect for the patients' expertise in providing a unique inside perspective was imperative for a successful collaboration. Research focus should not only be on mortality and reductions in daily life, but also on positive outcomes. Using a framework supports development and avoids pitfalls of PPI collaboration. PATIENT AND PUBLIC CONTRIBUTION: Patient partners were equal collaborators in all aspects of the study.

Caregiver burden and health-related quality of life among family caregivers of oesophageal cancer patients: a prospective nationwide cohort study.

BACKGROUND: Oesophageal cancer surgery is extensive with high risk of long-term health-related quality of life (HRQL) reductions. After hospital discharge, the family members often carry great responsibility for the rehabilitation of the patient, which may negatively influence their wellbeing. The purpose was to clarify whether a higher caregiver burden was associated with psychological problems and reduced HRQL for family caregivers of oesophageal cancer survivors. MATERIAL AND METHODS: This was a nationwide prospective cohort study enrolling family members of all patients who underwent surgical resection for oesophageal cancer in Sweden between 2013 and 2020. The family caregivers reported caregiver burden, symptoms of anxiety, depression, post-traumatic stress, and HRQL 1 year after the patient's surgery. Associations were analysed with multivariable logistic regression and presented as odds ratios (OR) with 95% confidence intervals (CI). Differences between groups were presented as mean score differences (MSD). RESULTS: Among 319 family caregivers, 101 (32%) reported a high to moderate caregiver burden. Younger family caregivers were more likely to experience a higher caregiver burden. High-moderate caregiver burden was associated with an increased risk of symptoms of anxiety (OR 5.53, 95%CI: 3.18-9.62), depression (OR 8.56, 95%CI: 3.80-19.29), and/or posttraumatic stress (OR 5.39, 95%CI: 3.17-9.17). A high-moderate caregiver burden was also associated with reduced HRQL, especially for social function (MSD 23.0, 95% CI: 18.5 to 27.6) and role emotional (MSD 27.8, 95%CI: 19.9 to 35.7). CONCLUSIONS: The study indicates that a high caregiver burden is associated with worse health effects for the family caregiver of oesophageal cancer survivors.

Prediction Model of Long-term Survival After Esophageal Cancer Surgery.

OBJECTIVE: We aimed to develop prediction models for estimating the long-term survival in patients who have undergone surgery for esophageal cancer. BACKGROUND: Few prediction models have been developed for the long-term survival in esophageal cancer patients. METHODS: This nationwide Swedish population-based cohort study included 1542 patients who survived for ≥90 days after esophageal cancer surgery between 1987 and 2010, with follow-up until 2016. Risk prediction models for 1-, 3-, and 5-year all-cause mortality and 3- and 5-year disease-specific mortality were developed using logistic regression. Candidate predictors were established and readily identifiable prognostic factors. The performance of the models was assessed by the area under receiver-operating characteristic curve (AUC) with interquartile range (IQR) using bootstrap cross-validation and risk calibration. RESULTS: Predictors included in all models were age, sex, pathological tumor stage, tumor histology, and resection margin status. The models also included various additional predictors depending on the outcome, that is, education level, neoadjuvant therapy, reoperation (within 30 d of primary surgery) and comorbidity (Charlson comorbidity index). The AUC statistics after cross-validation were 0.71 (IQR 0.69-0.74) for 1-year, 0.77 (IQR 0.75-0.80) for 3-year, and 0.78 (IQR 0.76-0.81) for 5-year all-cause mortality. The corresponding values were 0.76 (IQR 0.74-0.79) for 3-year and 0.77 (IQR 0.71-0.83) for 5-year disease-specific mortality. All models showed good agreement between the observed and predicted risks. CONCLUSIONS: These models showed good performance for predicting long-term survival after esophageal cancer surgery and may thus be useful for patients in planning their lives and to guide the postoperative treatment and follow-up.

Social distancing during the COVID-19 pandemic and health-related quality of life among esophageal cancer survivors.

PURPOSE: The purpose was to investigate whether social distancing during the COVID-19 pandemic reduced health-related quality of life (HRQL) in esophageal cancer patients and if so, to identify factors related to the HRQL changes. METHODS: A prospective Swedish nationwide study of patients who undergone surgery for esophageal cancer between 2013 and 2019. Telephone interviews were conducted 5 weeks and 13 weeks after the introduction of social distancing recommendations. The participants responded to a few scales and items from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30. Regression models adjusted for potential confounders were used to examine mean score differences (MSD) with 95% confidence intervals (CI) between compliance with the recommendations and HRQL. RESULTS: In total, 134 individuals participated in the study. At 5 weeks, a reduction in role function was seen for individuals who fully (MSD -8, 95% CI: -16 to 0) and to a large extent (MSD -19, 95% CI: -26 to -12) complied with the recommendations. Less fatigue (MSD 9, 95% CI: 3-15) was also detected for this group. Being female, elderly, having comorbidities, living in a region with higher COVID-19 incidence, living in a villa, and being considered as an at-risk person were related to changes in role function. At 13 weeks, reductions in role function continued for those who fully complied with the recommendations (MSD -10, 95% CI: -19 to -1), but the risk variables were of less importance. Improvements in fatigue were no longer detected. Global quality of life, emotional function, or insomnia remained stable over time. CONCLUSIONS: This study indicates that individuals who undergone surgery for esophageal cancer and fully or to a large extent complied with the recommendations experienced reductions in role function, but not in global quality of life or emotional function, during the COVID-19 pandemic.

Geographical variations in the incidence of oesophageal cancer in Sweden.

Background: Geographical variations in the incidence and tumour stage distribution of oesophageal cancer in Sweden are not well characterised.Methods: Using data from the Swedish Cancer Registry over 45 years (1972-2016), we compared the age-standardised incidence rates of oesophageal cancer by histological type across all seven national areas (in five-year periods) and 21 counties (in 15-year periods) in Sweden, and assessed the geographical distribution of tumour stage at diagnosis since 2004.Results: The incidence rate of oesophageal adenocarcinoma increased in all national areas and counties and in both sexes over time, while the rate of oesophageal squamous cell carcinoma decreased from the 1980s onwards. In the latest period (2012- 2016), the incidence rate of adenocarcinoma in men ranged from 3.5/100,000 person-years in West Sweden to 6.2/100,000 person-years in North Middle Sweden. At the county level, the rate of adenocarcinoma in men was lowest in Jämtland (2.7/100,000 person-years) and highest in Gotland (6.2/100 000 person-years) in 2002-2016. The incidence rates of both adenocarcinoma and squamous cell carcinoma in women were below 2/100,000 person-years in all national areas and counties in the latest calendar periods, i.e., 2012-2016 and 2002-2016, respectively. The proportion of patents with tumour stage IV ranged from 22% in Stockholm area to 31% in Middle Norrland, while at the healthcare region level it was lowest in Stockholm healthcare region (23%) and highest in North (30%) and Uppsala-Örebro (29%) healthcare regions.Conclusion: There are considerable geographical variations in the incidence and tumour stage distribution of oesophageal cancer in Sweden.

Patient-reported outcomes 1 year after oesophageal cancer surgery.

Purpose: To improve survivorship in patients who have undergone curatively intended treatment for oesophageal cancer, we aimed to identify key targets for future patient-reported outcomes research.Methods: This nationwide Swedish prospective cohort study enrolled patients between 2014 and 2019 who had undergone surgical resection for oesophageal cancer 1 year earlier. Eight well-validated patient-reported outcome measures, including health-related quality of life, psychological status and sleep, were presented as proportions and mean scores (MS) with 95% confidence intervals (CIs).Results: Among 281 participants, approximately half of the patients reported problems associated with food intake such as eating restrictions (49%) and food aversion (47%). Other common problems were sleep (51%), fatigue (41%) and anxiety (36%). Fewer patients suffered from financial difficulties (9%), trouble swallowing saliva (4%) and hair loss (7%). However, these problems were perceived as highly burdensome on an individual level.Conclusions: This nationwide, population-based study indicates that symptom burden is high in oesophageal cancer survivors 1 year after surgery. The most common problems are associated with food intake, sleep, fatigue and anxiety. However, less frequent symptoms were sometimes more debilitating for the individual patient.

Severe reflux, malnutrition and health-related quality of life after oesophageal cancer surgery: A prospective nationwide cohort study.

INTRODUCTION: While most survivors of oesophageal cancer suffer from multiple symptoms, studies on combined symptom burden are scarce, particularly when looking at long-term outcomes. Therefore, we aimed to investigate the association between gastro-oesophageal reflux and health-related quality of life in malnourished survivors during the first years after oesophagectomy for cancer. MATERIALS AND METHODS: This nationwide prospective cohort study included all Swedish patients who underwent curatively intended oesophagectomy for oesophageal cancer between 2013 and 2020 with 3-year follow-up. Linear mixed effect models were used to analyse the associations between reflux symptoms, malnutrition and HRQL at 1-, 2- and 3 years post-surgery and were presented with mean score difference (MSD) and 95 % confidence intervals (CI). RESULTS: Among 406 included individuals, malnourished survivors with severe reflux reported more problems with nausea/vomiting (MSD 16.3, 95 % CI: 11.4 to 21.3), pain (MSD 16.5, 95 % CI: 10.2 to 22.8), body image (MSD 12.3, 95 % CI: 5.6 to 19.0), eating restrictions (MSD 11.3, 95 % CI: 6.1 to 16.5), swallowing saliva (MSD 10.0, 95 % CI: 5.2 to 14.8), dry mouth (MSD 10.5, 95 % CI: 2.4 to 18.7), and taste (MSD 14.1, 95 % CI: 7.1 to 21.0) compared to malnourished survivors with no reflux. Nausea/vomiting, financial difficulties, body image, and cognitive function were consistently worse for malnourished individuals with reflux throughout the 3 years. CONCLUSIONS: The study suggests that gastro-oesophageal reflux negatively influences health-related quality of life in malnourished oesophageal cancer survivors. Nausea and/or vomiting were consistently worse for malnourished individuals with reflux independent of time point.

Self-care advice for patients after surgery for oesophageal cancer - a mixed-methods systematic review.

PURPOSE: The aim of the literature review was to identify and synthesise research on self-care advice for oesophageal cancer survivors. METHODS: A mixed-methods systematic review and synthesis of existing literature on the topic. Five databases were searched for studies providing information on self-care advice for survivorship after oesophageal cancer surgery, in English, with no time filter. The Critical Appraisal Skills Program was used to assess the risk of bias. Data were presented by textual descriptions and grouping of data. RESULTS: Among the 13 studies included in the review, five pieces of self-care advice were identified; reconstructing eating habits, bed-head elevation, health-promoting advice, monitoring symptoms and body functions, and involving family and friends. The self-care advice was experienced to be hard work, but worth the effort. They also provided reassurance and an increased understanding of bodily changes and social consequences of the disease and treatment. CONCLUSIONS: There are is little evidence-based self-care advice for oesophageal cancer survivors. However, the existing self-care advice was appreciated and contributed to an increased understanding of the situation. Comprehensible and easy-to-follow recommendations should be provided to all oesophageal cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Evidence-based self-care advice helpful for the individual oesophageal cancer survivor may be imperative to cope with the consequences of oesophagectomy after hospital discharge.

Trajectories of patient-reported outcomes after oesophageal cancer surgery - A population-based study.

BACKGROUND: This study aimed to investigate the trajectories of patient-reported outcomes for individuals who have undergone surgery for oesophageal cancer over a five-year post-surgical period, and to identify modifiable factors that contribute to a decline in quality of life. METHODS: Patients who underwent resection in Sweden between 2013 and 2020 were included. Data were collected at one-year post-surgery and at regular pre-determined intervals during the five-year post-surgical period. Latent class analysis and logistic regression models were used to identify symptom trajectories and determine their association with lifestyle factors, respectively. RESULTS: This study included 408 patients, and the majority experienced consistent symptom burdens during the five-year post-surgery period. Current smokers had a higher risk of belonging to the severe dysphagia, severe eating restriction, and severe reflux trajectory. Physically active patients were less likely to belong to the severe dysphagia, severe eating restriction, and severe pain and discomfort trajectory. Patients with a stable weight were less likely to belong to the severe eating restriction and to the recovering body image trajectory. CONCLUSIONS: Patients who are smokers, have a low level of physical activity, and experience weight loss need further attention and individual support to mitigate long-term symptom burden.

Home-based physical activity after treatment for esophageal cancer-A randomized controlled trial.

BACKGROUND: The treatment of most esophageal cancer patients includes chemo(radio)therapy and extensive surgery, causing physical decline with loss of muscles. This trial aimed to test the hypothesis that a tailored home-based physical activity (PA) intervention improves muscle strength and mass in patients having undergone curative treatment for esophageal cancer. METHODS: Patients operated for esophageal cancer 1 year earlier were included in a nationwide randomized controlled trial in Sweden in 2016-2020. The intervention group was randomized to a 12-week home-based exercise program, while the control group was encouraged to maintain routine daily PA. The primary outcomes were changes in maximal/average hand grip strength measured with hand grip dynamometer and lower extremity strength measured using 30-second chair stand test and muscle mass measured using a portable bio-impedance analysis monitor. Intention-to-treat analysis was used, and results were presented as mean differences (MDs) with 95% confidence intervals (CIs). RESULTS: Among 161 randomized patients, 134 completed the study, 64 in the intervention group and 70 in the control group. Compared with the control group (MD 2.73; 95% CI 1.75-3.71), patients in the intervention group (MD 4.48; 95% CI 3.18-5.80) had statistically significantly (p = 0.03) improved lower extremity strength. No differences were seen for hand grip strength or muscle mass. CONCLUSION: A home-based PA intervention 1 year after surgery for esophageal cancer improves lower extremity muscle strength.

Minimally invasive surgical techniques for oesophageal cancer and nutritional recovery: a prospective population-based cohort study.

OBJECTIVES: To explore whether the minimally invasive oesophagectomy (MIE) or hybrid minimally invasive oesophagectomy (HMIE) are associated with better nutritional status and less weight loss 1 year after surgery, compared with open oesophagectomy (OE). DESIGN: Prospective cohort study. SETTING: All patients undergoing oesophagectomy for cancer in Sweden during 2013-2018. PARTICIPANTS: A total of 424 patients alive at 1 year after surgery were eligible, and 281 completed the 1-year assessment. Of these, 239 had complete clinical data and were included in the analysis. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was nutritional status at 1 year after surgery, assessed using the abbreviated Patient-Generated Subjective Global Assessment questionnaire. The secondary outcomes included postoperative weight loss at 6 months and 1 year after surgery. RESULTS: Of the included patients, 78 underwent MIE, 74 HMIE while 87 patients underwent OE. The MIE group had the highest prevalence of malnutrition (42% vs 22% after HMIE vs 25% after OE), reduced food intake (63% vs 45% after HMIE vs 39% after OE), symptoms reducing food intake (60% vs 45% after HMIE vs 60% after OE) and abnormal activities/function (45% vs 32% after HMIE vs 43% after OE). After adjustment for confounders, MIE was associated with a statistically significant increased risk of reduced food intake 1 year after surgery (OR 2.87, 95% CI 1.47 to 5.61), compared with OE. Other outcomes were not statistically significantly different between the groups. No statistically significant associations were observed between surgical techniques and weight loss up to 1 year after surgery. CONCLUSIONS: MIE was statistically significantly associated with reduced food intake 1 year after surgery. However, no differences were observed in weight loss between the surgical techniques. Further studies on nutritional impact of surgical techniques in oesophageal cancer are needed.

Role of dietitian support in improving weight loss and nutrition impact symptoms after oesophageal cancer surgery.

BACKGROUND: Oesophageal cancer is frequently accompanied with malnutrition. We aimed to evaluate if early support from dietitians and patient's level of satisfaction with the support from dietitians are associated with better outcomes for weight loss and nutrition impact symptoms (NIS). METHODS: A nationwide and prospective cohort study on patients operated for oesophageal cancer in Sweden from 2013 onwards, included one year after surgery. Study exposures were (1) preoperative dietitian support (yes vs no) and, (2) patient reported satisfaction with dietitian support (high vs low) and outcomes were postoperative (1) percentage weight loss and (2) NIS score (range 0-24); one year after surgery. An ANCOVA model adjusted for predefined confounders was used and presented as mean differences (MD) with 95% confidence intervals (CI). RESULTS: Among 245 patients, as many as 57% had received preoperative dietitian support. Preoperative dietitian support was not associated with statistically significant differences in mean postoperative weight loss (MD 0.2 [95% CI -2.6 to 2.9]) and mean NIS score (MD 0.1 [95% CI: -0.8 to 1.0]). Likewise, satisfaction with the dietitian support was not associated with significant differences in mean postoperative weight loss (MD 1.4 [95% CI: -1.5 to 4.3]) and NIS score (MD -0.1 [95% CI: -1 to 0.8]). CONCLUSIONS: Long-term postoperative weight loss and NIS were not influenced based on whether dietitian support was initiated preoperatively or not and patient's satisfaction level with dietitian support. Similarity in results may reflect effective screening of malnutrition and dietitian support in centres treating oesophageal cancer in Sweden.

Prevalence and intensity of dumping symptoms and their association with health-related quality of life following surgery for oesophageal cancer.

BACKGROUND & AIMS: This study aimed to investigate the prevalence and intensity of symptoms of dumping syndrome (early and late) experienced by oesophageal cancer survivors one year after surgery and their association with health related quality of life (HRQL). METHODS: A prospective cohort study of patients who underwent surgery for oesophageal cancer in Sweden from January 2013 to April 2018, included at one year after surgery with follow-up at 1.5 years. Common symptoms of dumping syndrome were the exposure, classified as early and late onset, further divided into 'moderate' or 'severe' based on symptom intensity, and no dumping symptoms (reference group). The primary outcome was mean summary score of HRQL, and secondary outcomes were global quality of life, physical, role, emotional, cognitive and social function measured using the EORTC QLQ-C30 1.5 years after surgery. An ANCOVA model, adjusted for potential confounders was used to study the association between dumping symptoms and HRQL, presented as mean score differences (MD) with 95% confidence intervals (CI). RESULTS: Among 188 patients, moderate early dumping symptoms was experienced by 45% and severe early dumping by 9%. Moderate late dumping symptoms was reported by 13%, whereas 5% reported severe late dumping symptoms. Severe early dumping symptoms was associated with worse HRQL in 4 out of 7 aspects with worse global quality of life (MD -16, 95% CI: -27 to -4) and social function (MD -17, 95% CI: -32 to -3), which showed clinically large differences compared to having no such symptoms. Patients with moderate late dumping symptoms reported poorer HRQL in 6 out of 7 aspects compared to those with no dumping symptoms. Cognitive function (MD -27, 95% CI: -47 to -7) and emotional function (MD -24, 95% CI: -47 to -2) were significantly declined (clinically large relevance) in those with severe late dumping symptoms. CONCLUSIONS: Patients who have undergone curative treatment for oesophageal cancer experience reduced HRQL from early and late dumping symptoms at one year after surgery that indicate clear implications for clinical routine. Medical support and additional dietary counselling are required as potential ways to alleviate dumping symptoms on clinical repercussions.

Education level and health-related quality of life after oesophageal cancer surgery: a nationwide cohort study.

OBJECTIVE: The purpose of the study was to investigate whether low education level was associated with patients' health-related quality of life (HRQOL) after oesophageal cancer resection. SETTING: A nationwide cohort study in Sweden. PARTICIPANTS: In total, 378 patients who underwent oesophageal cancer surgery in 2001-2005 were followed up 6 months and 3 years after surgery. OUTCOME MEASURES: HRQOL was assessed by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (QLQ-C30) and the oesophageal cancer-specific module. The association between level of education and HRQOL was calculated with linear regression models, providing mean score differences (MD) and 95% CIs. Data were analysed separately for women and men. RESULTS: Education level was not associated with HRQOL recovery after oesophageal cancer surgery. However, when data were stratified by sex, lower education was associated with worse emotional function (MD -13; 95% CI -22 to -3), more symptoms of insomnia (MD 20; 95% CI 8 to 32) and reflux (MD: 15; 95% CI 3 to 26) for women, but not for men. Among women, low education was in general associated with worse functioning and more symptoms. CONCLUSIONS: Low education was not associated with worse HRQOL after oesophageal cancer surgery. However, when data were stratified for sex, low education level was associated with worse functioning and more symptoms in certain HRQOL domains for women, particularly in a short-term perspective. For men, no such association was found.