Lisa M. Wintner

Taste alterations in breast and gynaecological cancer patients receiving chemotherapy: Prevalence, course of severity, and quality of life correlates

Abstract Background. Taste alterations (TAs) are frequently reported by chemotherapy patients. However, research on this topic is very scarce. The etiologies of TAs are not fully known and prevalences may vary across tumour types and chemotherapy regimens. The aim of the present study was to longitudinally investigate TAs in patients with breast cancer or gynaecological cancers receiving chemotherapy, and to provide expected values for TAs for these patient populations. Patients and methods. One hundred and nine cancer patients (32.1% gynaecological cancer, 67.9% breast cancer) receiving chemotherapy at the Department for Internal Medicine of Kufstein County Hospital were consecutively included in the study. At each visit the Quality of Life Questionnaire-Core30 and a screening scale for TAs, consisting of two validated questions taken from the European Organisation for Research and Treatment of Cancer item bank was administered. Statistical analysis was performed using mixed-effect models. Results. The prevalence of TAs in breast cancer and gynaecological cancer patients receiving chemotherapy was high (76.1%). There were differences in the extent of TAs as well as in their time course across treatment groups. The lowest TAs were found in breast cancer and gynaecological cancer patients treated with gemcitabine. The highest TAs were found in breast cancer patients treated with epirubicin/docetaxel/capecitabine. The steepest increase of TAs was found in patients treated with epirubicin/docetaxel. Moreover, significant associations between TAs and appetite loss as well as fatigue were found. Conclusion. The results show that TAs are an issue in breast and gynaecological cancer patients receiving different chemotherapy regimens. There is a need for a more systematic investigation of TAs in chemotherapy patients in general as well as the need to address this issue in clinical practice.

Systematic review reveals lack of quality in reporting health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours.

BackgroundGastroenteropancreatic neuroendocrine tumours (GEP-NET) are often slow-growing and patients may live for years with metastasised disease. Hence, along with increasing overall and progression-free survival, treatments aim at preserving patients’ well-being and health-related quality of life (HRQoL). However, studies on systematic HRQoL assessment in patients with GEP-NET are scarce. Therefore, the purpose of the current review is to systematically evaluate the methodological quality of the identified studies.MethodsA targeted database search was performed in PubMed, EMBASE, and CENTRAL. Data extraction was conducted by two independent researchers according to predefined criteria. For study evaluation, the Minimum Standard Checklist for Evaluating HRQoL Outcomes in Cancer Clinical Trials and the CONSORT Patient-Reported Outcome extension were adapted.ResultsThe database search yielded 48 eligible studies. We found the awareness for the need of HRQoL measurement to be growing and application of cancer-specific instruments gaining acceptance. Overall, studies were too heterogeneous in terms of patient characteristics and treatment interventions to draw clear conclusions for clinical practice. More importantly, a range of methodological shortcomings has been identified which were mainly related to the assessment and statistical analysis, as well as the reporting and interpretation of HRQoL data.ConclusionDespite an increasing interest in HRQoL in GEP-NET patients, there is still a lack of knowledge on this issue. A transfer of HRQoL results into clinical practice is hindered not only by the scarceness of studies, but also by the often limited quality of HRQoL processing and reporting.

Verwendung und Nutzen von Patient-Reported Outcomes in der onkologischen Behandlung: eine Übersicht

ZusammenfassungFür die Evaluation onkologischer Therapien gewinnen subjektive Parameter wie die Lebensqualität zunehmend an Bedeutung. Die Belastung des Patienten bspw. durch Schmerzen, Fatigue und soziale Krankheitsfolgen üben einen beträchtlichen Einfluss auf das Wohlergehen aus und können nur durch direkte Aussagen des Patienten selbst erfasst werden. Die routinemäßige Erhebung von Patient-Reported Outcomes (PROs) bietet mehrere Vorteile: die Identifikation von Beeinträchtigungen, Verbesserung der Arzt-Patienten-Kommunikation, umfangreichere Beurteilung des Behandlungserfolgs und die direkte Abstimmung von Interventionen auf die Bedürfnisse des Patienten. Für den breiten Einsatz in ambulanten und stationären Settings sind gut validierte Instrumente und adäquate Softwarelösungen verfügbar. Das Anwendungsspektrum von PROs aus der klinischen Routine ist umfangreich. Sie erlauben wissenschaftliche Analysen, tragen zur Qualitätssicherung bei und finden Verwendung im Health Technology Assessment.SummaryThe patient’s perspective evaluated by patient-reported outcomes (PROs) gains more and more importance, since treatment efficacy is no longer solely linked to clinical outcomes like cure and overall survival. Ailments like pain, fatigue and social isolation can only be assessed by patients’ direct expression without any interpretation made by medical staff. PROs facilitate the disclosure of quality of life issues and patients feel a stronger support due to improved communication. PROs offer many further advantages like saving of time, cost and staff, targeted intervention and sensitizing of clinicians. Also, internationally validated questionnaires are available and the development of electronic PROs eases data-collection, calculation and storage. PROs collected within clinical routine are versatile concerning their applicability: They can be used for scientific analyses, quality assurance, and health technology assessment.

[The benefits of using patient-reported outcomes in cancer treatment: an overview].

ZusammenfassungFür die Evaluation onkologischer Therapien gewinnen subjektive Parameter wie die Lebensqualität zunehmend an Bedeutung. Die Belastung des Patienten bspw. durch Schmerzen, Fatigue und soziale Krankheitsfolgen üben einen beträchtlichen Einfluss auf das Wohlergehen aus und können nur durch direkte Aussagen des Patienten selbst erfasst werden. Die routinemäßige Erhebung von Patient-Reported Outcomes (PROs) bietet mehrere Vorteile: die Identifikation von Beeinträchtigungen, Verbesserung der Arzt-Patienten-Kommunikation, umfangreichere Beurteilung des Behandlungserfolgs und die direkte Abstimmung von Interventionen auf die Bedürfnisse des Patienten. Für den breiten Einsatz in ambulanten und stationären Settings sind gut validierte Instrumente und adäquate Softwarelösungen verfügbar. Das Anwendungsspektrum von PROs aus der klinischen Routine ist umfangreich. Sie erlauben wissenschaftliche Analysen, tragen zur Qualitätssicherung bei und finden Verwendung im Health Technology Assessment.SummaryThe patient’s perspective evaluated by patient-reported outcomes (PROs) gains more and more importance, since treatment efficacy is no longer solely linked to clinical outcomes like cure and overall survival. Ailments like pain, fatigue and social isolation can only be assessed by patients’ direct expression without any interpretation made by medical staff. PROs facilitate the disclosure of quality of life issues and patients feel a stronger support due to improved communication. PROs offer many further advantages like saving of time, cost and staff, targeted intervention and sensitizing of clinicians. Also, internationally validated questionnaires are available and the development of electronic PROs eases data-collection, calculation and storage. PROs collected within clinical routine are versatile concerning their applicability: They can be used for scientific analyses, quality assurance, and health technology assessment.

Initial phases in the development of a European Organisation for Research and Treatment of Cancer communication-specific module

Dear Editor,IntroductionCommunication between patient and professional is a keyelementinthesupportofferedtocancerpatients[1,2],espe-cially those with advanced disease. Adequate informationdisclosure, particularly when receiving bad news, involvesa process in which communication is very important [3].Models of care indicate the type of relationship andcommunication that is established between the patientand the professional. In recent years, the care given tocancer patients has changed from being paternalistic topatient centered and on the basis of patient autonomy.The paternalistic model is an asymmetrical relationshipwith the professional occupying the dominant positionand the patient merely cooperating. Professionals employtight interviewing methods to elicit the necessary medicalinformation while providing little opportunity for patientsto participate [4]. Patient-centered cancer care,ontheotherhand,respectsandrespondstotheindividualpatient’spreferences,needs,andvaluesallowingforflexibilityintherelations between patients and professionals [5].The concept of patient-centered cancer care includespatient-centered communication (PCC), which is definedin terms of processes and outcomes of the patients and cli-nician interaction [6]:1. Eliciting, understanding, and validating the patients’perspective (representations, concerns, feelings, etc.);2. Understanding patients within their own psychologi-cal and social contexts;3. Reaching a shared understanding of patient’s prob-lems and how to treat them; and4. Helping patients share power by offering them mean-ingful involvement in health-related choices.Within the PCC model, Epstein et al. [6] suggest thefollowing six core functions: fostering healing relation-ships, exchanging information, responding to emotions,managing uncertainty, making decisions, and enablingpatient self-management. These authors understand

Verwendung und Nutzen von Patient-Reported Outcomes in der onkologischen Behandlung: eine Übersicht@@@The benefits of using patient-reported outcomes in cancer treatment: an overview

ZusammenfassungFür die Evaluation onkologischer Therapien gewinnen subjektive Parameter wie die Lebensqualität zunehmend an Bedeutung. Die Belastung des Patienten bspw. durch Schmerzen, Fatigue und soziale Krankheitsfolgen üben einen beträchtlichen Einfluss auf das Wohlergehen aus und können nur durch direkte Aussagen des Patienten selbst erfasst werden. Die routinemäßige Erhebung von Patient-Reported Outcomes (PROs) bietet mehrere Vorteile: die Identifikation von Beeinträchtigungen, Verbesserung der Arzt-Patienten-Kommunikation, umfangreichere Beurteilung des Behandlungserfolgs und die direkte Abstimmung von Interventionen auf die Bedürfnisse des Patienten. Für den breiten Einsatz in ambulanten und stationären Settings sind gut validierte Instrumente und adäquate Softwarelösungen verfügbar. Das Anwendungsspektrum von PROs aus der klinischen Routine ist umfangreich. Sie erlauben wissenschaftliche Analysen, tragen zur Qualitätssicherung bei und finden Verwendung im Health Technology Assessment.SummaryThe patient’s perspective evaluated by patient-reported outcomes (PROs) gains more and more importance, since treatment efficacy is no longer solely linked to clinical outcomes like cure and overall survival. Ailments like pain, fatigue and social isolation can only be assessed by patients’ direct expression without any interpretation made by medical staff. PROs facilitate the disclosure of quality of life issues and patients feel a stronger support due to improved communication. PROs offer many further advantages like saving of time, cost and staff, targeted intervention and sensitizing of clinicians. Also, internationally validated questionnaires are available and the development of electronic PROs eases data-collection, calculation and storage. PROs collected within clinical routine are versatile concerning their applicability: They can be used for scientific analyses, quality assurance, and health technology assessment.

Electronic Patient-Reported Outcome Monitoring (ePROM) in Brain Tumour Patients

The diagnosis of brain tumour commonly goes along with short survival, bad outcome prognosis and strongly impaired health-related quality of life (HRQOL) due to the disease itself, anti-cancer treatment or ancillary medication. Patient-reported outcome monitoring (PROM) ensures the capture of individual problematic issues threatening patients’ HRQOL for a targeted and patient-tailored intervention. Practical barriers of PROM can be avoided by electronic data capture (ePROM), which saves time, human resources and can help to deepen patient-physician communication and to improve patients’ satisfaction with care. Furthermore, tele-monitoring incorporates usually neglected time points when patients are discharged from hospital and symptom burden is only partly communicated to physicians and nurses. For comprehensive health care of brain tumour patients the usage of ePROM and tele-monitoring could help to meet the patients’ needs.

Patient-Reported Outcome Monitoring in Brain Tumour Patients: Benefits and Requirements

In 2008 within the European Union brain cancer and cancer of the nervous system ranked number 15 within the 20 most diagnosed cancer types (Ferlay et al., 2010). Compared to the five most frequent cancer types brain cancer seems to have a small-sized incidence-rate, but the mortality rate for this type of cancer is much higher than those of most high-incidencecancers (except lung cancer). Though brain cancer is only seldom diagnosed, its negative impact on patients health status and well-being should not be disregarded, as survival prognosis is poor and deteriorated health-related quality of life (QOL) is common (Taphoorn et al., 2010). Treatment options comprise surgery, radiation, chemotherapy and supplementary medical therapies. Brain cancer is characterised by a large variety of tumour types and a distinction is made between primary tumours arising directly from brain tissue and secondary tumours, which are brain metastases from other malignant diseases. This differentiation is often difficult to make, though, it is of special importance since the best possible treatment e.g. for glioblastoma strongly differs from those for brain metastases (Campos et al., 2009) and inadequate intervention jeopardises patients’ QOL. Survival expectancy is strongly related to the WHO grade of the tumour and varies vigorously. Grade I tumours may not shorten life expectancy, grade II tumours are associated with a survival time of 2-10 years, grade III tumours with a survival time of 2-3 years and grade IV tumours with a survival time of only 9-12 months (Reardon & Wen, 2006). Not only the tumour itself, but also treatment-related side effects and adverse events caused by supportive medication (e.g. steroids and antiepileptic drugs (Sizoo et al., 2010)), confront the patient with a high level of physical and psychosocial burden. Brain tumour patients are affected by a diversity of tumour symptoms, which might be caused by increased intracranial pressure (e.g. headache, anorexia, seizures, nausea, vomiting, sleeping longer at night, drowsiness, napping during the day). Further physical impairments may occur due to focal neurological deficits (e.g. motor deficit, aphasia, visual field defects) and even more burdensome both for patients and care-givers might be symptoms like personality changes, decrease in mental capacity and concentration, mood disturbances, cognitive dysfunction, fatigue and anxiety (Heimans & Taphoorn, 2002; Sizoo et al., 2010). These symptoms were found to have a negative impact on both patients’ and their carers’ overall QOL if compared to general population (Janda et al., 2007). As brain tumour patients cannot be cured in most cases, the treatment has to focus on maintaining QOL, to make the patients remaining life time as enjoyable as possible.

Elektronisches Routine-Outcome-Monitoring (eROM) in Psychiatrie und klinischer Psychologie

ZusammenfassungSelbstberichte von Patienten („patient-reported outcomes“, PROs) ermöglichen eine systematische Sammlung, Auswertung und Dokumentation von Patientenangaben. Sie rücken die Sichtweise der Patienten in den Mittelpunkt und ermöglichen so individualisierte Behandlungsentscheidungen.An der Station für Psychosomatische Medizin der Medizinischen Universität Innsbruck wurde in vier Schritten ein elektronisches Routine-Outcome-Monitoring (eROM) implementiert. Alle Patienten, die die Einschlusskriterien erfüllten, wurden ab Juni 2015 in das Programm eingeschlossen und bearbeiteten ein vorgegebenes Set von PRO-Instrumenten.Von Juni 2015 bis Mai 2018 wurden 300 Patienten im Rahmen ihres stationären Aufenthaltes in das eROM eingeschlossen. Die Erhebung wird am Beispielverlauf der ersten routinemäßig befragten Patientin beschrieben, der sich über drei stationäre Aufenthalte erstreckte.Das implementierte eROM ist eine praktikable Methode, um standardisiert PRO-Daten im Längsschnitt zu erheben und diese für die individuelle Behandlung zu nutzen. Des Weiteren können diese Daten auch auf Kollektivebene für wissenschaftliche Zwecke ausgewertet werden.AbstractPatient-reported outcomes (PROs) allow standardized assessment, analysis and documentation of the patient perspective, fostering patient-centred care and individual treatment decisions.At the University Hospital of Psychiatry II at the Medical University of Innsbruck, electronic routine outcome monitoring (eROM) was implemented in a four step process. Starting in June 2015, all patients meeting the inclusion criteria were asked to complete a specific set of PRO instruments.From June 2015 to May 2018, 300 patients completed eROM as part of their inpatient stay. The case example of the first patient participating in eROM, covering the time frame of three inpatient stays, illustrates the assessment procedure and the clinical relevance of PRO data.The implemented eROM offers a feasible possibility to collect PRO data covering patients’ subjective health status, providing important information for individual treatment adjustment. Furthermore, the assessed data can be used for research purposes, e. g. group level analysis.

EORTC QLQ-COMU26: a questionnaire for the assessment of communication between patients and professionals. Phase III of the module development in ten countries

PurposeCommunication between patients and professionals is one major aspect of the support offered to cancer patients. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) has developed a cancer-specific instrument for the measurement of different issues related to the communication between cancer patients and their health care professionals.MethodsQuestionnaire development followed the EORTC QLG Module Development Guidelines. A provisional questionnaire was pre-tested (phase III) in a multicenter study within ten countries from five cultural areas (Northern and South Europe, UK, Poland and Taiwan). Patients from seven subgroups (before, during and after treatment, for localized and advanced disease each, plus palliative patients) were recruited. Structured interviews were conducted. Qualitative and quantitative analyses have been performed.ResultsOne hundred forty patients were interviewed. Nine items were deleted and one shortened. Patients’ comments had a key role in item selection. No item was deleted due to just quantitative criteria. Consistency was observed in patients’ answers across cultural areas. The revised version of the module EORTC QLQ-COMU26 has 26 items, organized in 6 scales and 4 individual items.ConclusionsThe EORTC COMU26 questionnaire can be used in daily clinical practice and research, in various patient groups from different cultures. The next step will be an international field test with a large heterogeneous group of cancer patients.