Colorectal cancer survivors' long-term recollections of their illness and therapy up to seven years after enrolment into a randomised controlled clinical trial.

BACKGROUND: As a consequence of effective treatment procedures, the number of long-term survivors of colorectal cancer is ever increasing. Adopting the method of a previous study on breast cancer patients, the goal of the present research was to investigate colorectal cancer patients' recollections of their illness and treatment experiences up to seven years after they have been enrolled in a randomised controlled clinical trial on the direct improvement of quality of life (RCT DIQOL). METHODS: Colorectal cancer survivors in Bavaria, Germany were mailed a questionnaire on average 78·3 months after the start of their therapy and enrolment into RCT DIQOL. The questionnaire enquired about their worst experience during the colorectal cancer episode, positive aspects of the illness, and any advice they would give to newly diagnosed patients. Patient responses were categorised by two independent raters and cross-checked by a third independent rater. Frequencies of these categories were then quantitatively analysed using descriptive statistics. RESULTS: Of 146 remaining survivors initially enrolled in RCT DIQOL, 96 (66%) returned the questionnaire. The majority (33%) of statements regarding the worst experience was referring to "psychological distress", followed by "indigestion and discomfort during defecation" (17%), and "cancer diagnosis" (16%). Among survivors with history of a stoma, the majority (36%) regarded "stoma" as their worst experience. With 45%, "change in life priorities" has been the most frequent positive category before "support by physicians/ nurses" (25%). 43% of the survivors deemed "fighting spirit" as most important advice to overcome the disease. CONCLUSION: Even after many years, colorectal cancer survivors clearly remember experiences from the time of their illness. Echoing the results of the previous breast cancer survivors' study, "psychological distress", "change in life priorities" and "fighting spirit" emerged as prominent concepts. In addition, some aspects like the impact of a stoma are of specific importance for colorectal cancer survivors. These findings can be used to inform programmes to improve patient- and quality of life centred aftercare of tumour patients. CLINICAL TRIAL INFORMATION: NCT04930016, date of registration 18.06.2021.

Long-term improvement of quality of life in patients with breast cancer: supporting patient-physician communication by an electronic tool for inpatient and outpatient care.

PURPOSE: The effectiveness of a pathway with quality of life (QoL) diagnosis and therapy has been already demonstrated in an earlier randomized trial (RCT) in patients with breast cancer. We refined the pathway by developing and evaluating an electronic tool for QoL assessment in routine inpatient and outpatient care. METHODS: In a single-arm study, patients with breast cancer with surgical treatment in two German hospitals were enrolled. QoL (EORTC QLQ-C30, QLQ-BR23) was measured with an electronic tool after surgery and during aftercare in outpatient medical practices (3, 6, 9, 12, 18, and 24 months) so that results (QoL-profile) were available immediately. Feedback by patients and physicians was analyzed to evaluate feasibility and impact on patient-physician communication. RESULTS: Between May 2016 and July 2018, 56 patients were enrolled. Physicians evaluated the QoL pathway as feasible. Patients whose physician regularly discussed QoL-profiles with them reported significantly more often that their specific needs were cared for (p < .001) and that their physician had found the right treatment strategy for these needs (p < .001) compared with patients whose doctor never/rarely discussed QoL-profiles. The latter significantly more often had no benefit from QoL assessments (p < .001). CONCLUSION: The QoL pathway with electronic QoL assessments is feasible for inpatient and outpatient care. QoL results should be discussed directly with the patient. CLINICAL TRIAL INFORMATION: NCT04334096, date of registration 06.04.2020.

Health services research in colorectal cancer: a quasi-experimental interventional pilot study on in- and outpatient oncology.

INTRODUCTION: Due to frequent treatment side effects and weight loss, colorectal cancer patients require oncologic care and nutritional counseling both during and after hospitalization. The current study evaluated differences in discharge and side effects management and nutritional behavior between colorectal cancer patients of a control group without systematic counseling and of an intervention group with access to structured in- and outpatient oncology nurse and nutritional counseling. METHODS: The presented explorative, quantitative, single-center, interventional pilot study is a health services research project with a quasi-experimental design. Using a self-designed standardized questionnaire, data were collected from the control group (n = 75) before and from the intervention group (n = 114) after the introduction of in- and outpatient oncology nurse and structured systematic nutritional counseling. The in- and outpatient counseling services were developed and evaluated in the form of a structured nurse-led counseling concept. RESULTS: Intervention group patients profited significantly from inpatient oncology nurse counseling in seven different areas of discharge management. No differences were observed concerning patient-reported general and gastrointestinal side effects except for xerostomia and dysphagia, but of the patients participating in both in- and outpatient oncology nurse counseling, 90.0% were better able to cope with general side effects of treatment. Patients with in- and outpatient structured systematic nutritional counseling more frequently received nutritional information (p = 0.001), were better at gauging food intolerances (p = 0.023), and followed the dietician's advice in cases of gastrointestinal side effects significantly more often (p = 0.003) than control patients. Counselor-reported outcomes concerning gastrointestinal side effects showed improvement in most of the patients taking part in systematic in- and outpatient nutritional counseling, except for weight loss in 4 patients. CONCLUSION: In- and outpatient counseling in discharge and side effects management and nutrition improve the outcomes of colorectal cancer patients. Outpatient counseling should be further developed and evaluated in future studies.

[Development of a screening workflow to identify patient needs in an interdisciplinary oncological day clinic]. / Entwicklung eines Screening-Workflows zur Erkennung von Patientenbedürfnissen in einer interdisziplinären onkologischen Tagesklinik.

INTRODUCTION: The diagnosis of cancer leads to high levels of emotional distress in many patients. Quality of life is an important therapeutic goal in this context. A quality-of-life guide was implemented in the oncological day clinic (ICT) at the University Hospital of Regensburg (UKR) in order to individually support outpatients, help them with their questions and needs and improve their quality of life. METHODS: A screening tool is necessary for the structured assessment of quality of life/needs in the routine of tumor therapy and follow-up. As part of a mixed-methods study, focus groups with health professionals/patients were organized to specify the needs of cancer patients. On this basis, the literature was searched for questionnaires covering these needs in order to adapt an ICT-specific questionnaire and integrate it with the help of a workflow. RESULTS: A total of 333 individual aspects were brought up by the participants in focus groups on the needs of cancer patients in various phases of treatment/with various tumor entities. Since none of the questionnaires identified in the literature met our requirements, a new screening tool containing elements from different standardized forms and the results of the focus groups was developed and a new workflow created to integrate the questionnaire into the ICT routine. DISCUSSION: By interviewing health experts from different areas and patients with different tumor entities, the needs of cancer patients over different stages of the disease and additional possible differences between the cancer entities were identified and recorded. Through the implementation of a quality-of-life guide in the ICT, a structured assessment of the quality of life and an analysis of patient needs can take place with the help of the screening. A workflow was created to integrate screening into routine care. In addition, the questionnaire was designed in such a way that it can be used repeatedly at various points in time. In order to cover important stages in the course of therapy and to determine how patient needs change over the course, patients should be asked to complete the questionnaire several times after specified time intervals. CONCLUSION: The questionnaire is intended to assess the needs of cancer patients receiving outpatient treatment in a structured manner. Now it needs to be explored how the new screening tool and workflow interact and perform in clinical practice and how they help to improve patients' quality of life. It is also interesting to analyze which patients accept the advice offered by the quality-of-life guide and which needs are expressed most frequently.

Diagnosing deficits in quality of life and providing tailored therapeutic options: Results of a randomised trial in 220 patients with colorectal cancer.

BACKGROUND: The implementation of quality of life (QoL) concepts in routine care, is still an open matter. We followed the Medical Research Council framework for complex interventions to implement a model of QoL diagnosis and therapeutic options, and investigated its effectiveness in patients with colorectal cancer. METHODS: This randomised, single-blind, multicentre, clinical trial enrolled patients diagnosed with primary colorectal cancer aged 18 years or older who were surgically treated in one of four recruiting hospitals in Germany. All patients received aftercare from one of 178 coordinating practitioners (CPs) who had access to 75 healthcare professionals providing tailored therapies. QoL was measured (EORTC QLQ-C30, QLQ-CR29) in all patients after surgery (baseline) and during aftercare (3, 6, 12, 18 months). Patients were randomised (1:1) into two groups: a care pathway, including QoL-profiles consisting of 13 QoL scales plus specific therapeutic recommendations forwarded to the patient's CP or standard postoperative care adhering to the German national guideline for colorectal cancer (control). The primary endpoint was the proportion of patients in each group with a need for QoL therapy 12 months after surgery. Analyses were done in the intention-to-treat population. This trial is registered with ClinicalTrials.gov, number NCT02321813 and closed to accrual. FINDINGS: Between Jan 13, 2014, and Oct 28, 2015, 220 patients were enrolled and randomly assigned (n = 110 per group). At baseline (in hospital after surgery), a need for QoL therapy was diagnosed in 92/103 (89%) of intervention and 86/104 (83%) of control group patients. At 12 months (primary endpoint) the proportion of patients with a need for QoL therapy was 35/83 (42%; 95% CI 31-54%) in the intervention group versus 50/87 (57%; 95% CI: 46-68%) in the control group (p = 0·046, number needed to treat = 7; 95% CI 3-225). INTERPRETATION: Patients profited from the diagnosis of QoL deficits and tailored therapeutic options in their treatment of colorectal cancer. This trial confirmed the results of a previous RCT in breast cancer patients. The implementation of QoL concepts should become standard in treatment guidelines on cancer care. FUNDING: Federal Ministry of Education and Research (BMBF; grant no. 01GY1339). CLINICAL TRIAL INFORMATION: NCT02321813.

Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers.

BACKGROUND: The prognosis of patients with brain tumors is widely varying. Psychooncologic need and depression are high among these patients and their family caregivers. However, the need for counselling and need for referral to psychooncology care is often underestimated. METHODS: We performed a single-institution cross-sectional study to evaluate psychooncologic need, depression and information need in both patients and their family caregivers. The Hornheider Screening Instrument (HSI) and the Patient Health Questionnaire (PHQ-9) were used to evaluate psychooncologic need and depression, and a study-specific questionnaire was developed to evaluate information need. Multivariable analyses were performed to detect correlations. RESULTS: A total of 444 patients and their family caregivers were approached to participate, with a survey completion rate of 35.4%. More than half of the patients and family caregivers were in need for referral to psychooncology care and 31.9% of patients suffered from clinically relevant depression. In multivariable analysis, psychooncologic need were positively associated with mild (odds ratio, OR, 7.077; 95% confidence interval, CI, 2.263-22.137; p = 0.001) or moderate to severe (OR 149.27, 95% CI 26.690-737.20; p <  0.001) depression. Patient information need was associated with depression (OR 3.007, 95% CI 1.175-7.695; p = 0.022). CONCLUSIONS: Unmet counselling need in brain tumor patients and their family caregivers associate to high psychooncologic need and depression. Adequate information may decrease the need for referral to psychooncology care and treatment of depression in these patients. Future studies should further explore these relations to promote development of supportive structures.