Patient preferences for active surveillance vs standard surgery after neoadjuvant chemoradiotherapy in oesophageal cancer treatment: The NOSANO-study.

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

Cachexia and Dietetic Interventions in Patients With Esophagogastric Cancer: A Multicenter Cohort Study.

BACKGROUND: Cachexia is common in patients with esophagogastric cancer and is associated with increased mortality. Nutritional screening and dietetic interventions can be helpful in preventing evolvement of cachexia. Our aim was to study the real-world prevalence and prognostic value of pretreatment cachexia on overall survival (OS) using patient-reported weight loss, and to explore dietetic interventions in esophagogastric cancer. MATERIALS AND METHODS: Patients with esophagogastric cancer (2015-2018), regardless of disease stage, who participated in the Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients (POCOP) and completed patient-reported outcome measures were included. Data on weight loss and dietetic interventions were retrieved from questionnaires before start of treatment (baseline) and 3 months thereafter. Additional patient data were obtained from the Netherlands Cancer Registry. Cachexia was defined as self-reported >5% half-year body weight loss at baseline or >2% in patients with a body mass index (BMI) <20 kg/m2 according to the Fearon criteria. The association between cachexia and OS was analyzed using multivariable Cox proportional hazard analyses adjusted for sex, age, performance status, comorbidities, primary tumor location, disease stage, histology, and treatment strategy. RESULTS: Of 406 included patients, 48% had pretreatment cachexia, of whom 65% were referred for dietetic consultation at baseline. The proportion of patients with cachexia was the highest among those who received palliative chemotherapy (59%) or best supportive care (67%). Cachexia was associated with decreased OS (hazard ratio, 1.52; 95% CI, 1.11-2.09). Median weight loss after 3-month follow-up was lower in patients with cachexia who were referred to a dietician at baseline compared with those who were not (0% vs 2%; P=.047). CONCLUSIONS: Nearly half of patients with esophagogastric cancer have pretreatment cachexia. Dietetic consultation at baseline was not reported in more than one-third of the patients with cachexia. Because cachexia was independently associated with decreased survival, improving nutritional screening and referral for dietetic consultation are warranted to prevent further deterioration of malnutrition and mortality.

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

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

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.

Narrative recognition and identification: a qualitative pilot study into reading literary texts with advanced cancer patients.

PURPOSE: Patients with advanced cancer can experience their disease as a contingent life event. The sudden interruption of their life stories can obscure life goals and disrupt meaning making. In the context of the research project "In search of stories," we aim to investigate the reading and discussion of selected stories which present ways of dealing with a contingent life event. In addition, we examine the use of a newly developed guide for reading these exemplary texts together with advanced cancer patients. METHODS: This qualitative study describes the experiences of five patients with advanced cancer who participated in a guided reading and discussion about selected literary texts. The intervention consisted of reading a selected story, after which each patient was interviewed, using the reading guide as a conversation template. The interviews were then thematically analyzed for their conceptual content using a template analysis. RESULTS: All five conversations showed some form of recognition in reaction to the chosen text, which led to personal identification of experiences of contingency, such as loss of life goals, impending death, or feelings of uncertainty. Besides the important role of identification, revealed by the responses to the questions in the reading guide, the discussion of the text helped them articulate their own experience and sources of meaning. Diverse worldviews came to the fore and concepts of meaning such as fate, life goals, quality of life, and death. CONCLUSIONS: First experiences with our newly developed reading guide designed to support a structured reading of stories containing experiences of contingency suggest that it may help patients to express their own experiences of contingency and to reflect on these experiences. IMPLICATIONS FOR CANCER SURVIVORS: The intervention tested in this study may contribute to supportive care for survivors with advanced cancer, but further research is needed to evaluate its effect on quality of life.

Treatment decision-making during outpatient clinic visit of patients with esophagogastric cancer. The perspectives of clinicians and patients, a mixed method, multiple case study.

BACKGROUND: The probability of undergoing treatment with curative intent according to the hospital of diagnosis varies for esophagogastric cancer in the Netherlands. Little is known about the factors contributing to this variation. This study aimed to improve the understanding of the differences between the multidisciplinary team meeting treatment proposal and the treatment that was actually carried out and to qualitatively investigate the differences in treatment decision-making after the multidisciplinary team meeting treatment proposal between hospitals. METHODS: To gain an in-depth understanding of treatment decision-making, quantitative data (i.e., multidisciplinary team meeting proposal and treatment that was carried out) were collected from the Netherlands Cancer Registry. Changes in the multidisciplinary team meeting proposal and applied treatment comprised changes in the type of treatment option (i.e., curative or palliative, or no change) and were calculated according to the multivariable multilevel probability of undergoing treatment with curative intent (low, middle, and high). Qualitative data were collected from eight hospitals, including observations of 26 outpatient clinic consultations, 30 in-depth interviews with clinicians, seven focus groups with clinicians, and three focus groups with patients. Clinicians and patients' perspectives were assessed using thematic content analysis. RESULTS: The multidisciplinary team meeting proposal and applied treatment were concordant in 97% of the cases. Clinicians' implementation of treatment decision-making in clinical practice varied, which was mentioned by the clinicians to be due to the clinician's personality and values. Differences between clinicians consisted of discussing all treatment options versus only the best fitting treatment option and the extent of discussing the benefits and harms. Most patients aimed to undergo curative treatment regardless of the consequences, since they believed this could prolong their life. CONCLUSION: Since changes in the multidisciplinary team meeting-proposed treatment and actual treatment were rarely observed, this study emphasizes the importance of an adequately formulated multidisciplinary team meeting proposal.

Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients.

BACKGROUND: To provide holistic care to patients with advanced cancer, health care professionals need to gain insight in patients' experiences across the different domains of health. However, describing such complex experiences verbally may be difficult for patients. The use of a visual tool, such as Rich Pictures (RPs) could be helpful. We explore the use of RPs to gain insight in the experiences of patients with advanced cancer. METHODS: Eighteen patients with advanced cancer were asked to draw a RP expressing how they experienced living with cancer, followed by a semi-structured interview. Qualitative content analysis, including the examination of all elements in the drawings and their interrelationships, was used to analyze the RPs, which was further informed by the interviews. RESULTS: The RPs clearly showed what was most important to an individual patient and made relations between elements visible at a glance. Themes identified included: medical aspects, the experience of loss, feelings related to loss, support from others and meaningful activities, and integration of cancer in one's life. The added value of RPs lies in the ability to represent these themes in one single snapshot. CONCLUSIONS: RPs allow for a complementary view on the experiences of advanced cancer patients, as they show and relate different aspects of patients' lives. A RP can provide health care professionals a visual summary of the experiences of a patient. For patients, telling their story to health care professionals might be facilitated when using RPs.

Enhancing patient participation by training radiation oncologists.

OBJECTIVE: Several studies have shown that patients' active participation to their medical interaction is beneficial for their information processing and their quality of life. Unfortunately, cancer patients often act rather passively in contact with their oncologists. We investigated whether cancer patients' participation in radiation therapy consultations could be enhanced by specific communicative behaviours of the radiation oncologists (ROs). METHODS: Eight ROs and 160 patients participated; 80 patients in the pre training group and 80 patients in the post training group. The ROs were trained to use specific communicative behaviours that are supposed to encourage patient participation. In the training special attention was paid to communicative requirements in the first minutes of the consultation. The communicative behaviours of the ROs and the cancer patients were measured by the Roter Interaction Analysis System, and compared before and after the RO training. RESULTS: From the start throughout the entire consultation, patients in the post training group participated more in interactions than patients in the pre training group: they discussed more psychosocial issues, expressed more concerns and contributed more to decision-making. CONCLUSION: Cancer patients' participation in the initial radiation oncology consultations can be increased by training of ROs. PRACTICE IMPLICATIONS: The results suggest that doctors working with cancer patients should receive communication training and feedback on a regular base.

Patient participation in discussing palliative radiotherapy.

Cancer patients' participation in doctor-patient interactions has been shown to be an important factor in the emotional processing of their condition, particularly when only palliative treatments can be offered. In this study, we assessed incurable cancer patients' participation in initial consultations with their radiation oncologists (ROs). RO stimulation of patient participation and discussions about treatment decisions were also measured. The entire consultation was videotaped and analyzed using the Roter Interaction Analysis System (RIAS). Patients' participation proved to be low on medical information, but high on discussing their experiences and life circumstances. The ROs stimulated patient participation mainly by providing medical information and giving patients opportunities to tell their stories. Decisions about radiation treatment had previously taken place and were rarely discussed in the consultations studied. The results suggest that patient participation in palliative treatment consultations might be improved for facilitating patients' emotional processing of the incurable nature of their cancer.

Observation of nurse-patient interaction in oncology: review of assessment instruments.

The aim of this review is to identify assessment instruments that can be used for analyzing sequences and can be applied to research into nurse-patient communication in cancer care. A systematic search of the literature revealed a variety of methods and instruments applicable to studies recording nurse-patient interaction. The studies that were qualitative in nature offered valuable information on observational research in general, on procedures relating to informed consent and observational arrangements in nursing practice. The quantitative studies provided an insight into the content and structure of the interaction by describing communication concepts or by frequency counts of previously determined behaviours. Systematic research into interaction sequences was not found. However, some of the quantitative instruments identified could be adapted for this purpose. The complexity and time-consuming nature of observational research highlight the need for efficiency. For instance a combination of quantitative and qualitative instruments could be considered.

Monitoring and blunting in palliative and curative radiotherapy consultations.

OBJECTIVE: The present research paper investigates how cancer patients' monitoring and blunting coping styles are reflected in their communications during their initial radiotherapy consultations and in their evaluations of the consultation. Additionally, it is explored how a patient's disease status (curative versus palliative) influences the effects of his or her cognitive styles. METHODS: The study included 116 oncology patients receiving treatment from eight radiation oncologists. For 56 patients treatment intent was palliative and for the remaining 60 curative. The patients' communicative behaviors were assessed using the Roter Interaction Analysis System (RIAS). Within three days the patients completed a monitoring and blunting inventory and after another six weeks they evaluated the treatment decision and treatment information by postal questionnaire. RESULTS: Monitoring was positively and blunting negatively related to the patient's expression of questions, emotions and decision-making issues. After six weeks 'high monitors' as opposed to 'low monitors' reported having more doubts about the treatment decision and being less satisfied with the information received while 'high blunters' expressed fewer doubts and more satisfaction than 'low blunters' did. Significant associations were all attributable to the palliative treatment group. CONCLUSION: Cancer patients' communicative behaviors vis-à-vis their oncologist hinge on their cognitive styles and an unfavorable disease status enhances the effects.

Palliative or curative treatment intent affects communication in radiation therapy consultations.

OBJECTIVE: To assess whether communication in radiotherapy consultations is affected by palliative or curative treatment intent. SUBJECTS AND METHODS: The study involved 160 patients and 8 radiation oncologists. Eighty patients visited the radiation oncologist (RO) for palliative treatment and 80 for curative treatment. The consultation prior to radiation treatment was analyzed with the Roter Interaction Analysis System (RIAS). Within three days, patients completed a quality of life questionnaire (EORTC-QLQ-C30). RESULTS: In palliative radiotherapy (PRT) consultations, ROs asked more (closed-ended) biomedical and psychosocial questions and provided more information on prognosis than in consultations for curative radiotherapy (CRT). Patients in both groups provided a great deal of psychosocial information but asked few questions. The ROs expressed more concerns in the PRT consultations, while patients did not. PRT patients received fewer supportive remarks than CRT patients. In both groups, explicit decision-making received little attention. Proxies who accompanied the patients took a more active role in PRT than in CRT consultations. CONCLUSION: Communication in radiotherapy is affected by treatment intent with respect to the main contents of the consultation.