Mogens Groenvold

ObjectiveTo provide equipercentile equating of physical function (PF) scores from frequently used patient-reported outcome measures (PROMs) in cancer patients to facilitate data pooling and comparisons.Study Design and SettingAdult cancer patients from five European countries completed the European Organization for Research and Treatment of Cancer (EORTC) computer adaptive test (CAT) Core, EORTC Quality of Life Questionnaire Version 3.0 (QLQ-C30), Functional Assessment of Cancer Therapy - General (FACT-G), 36-item Short Form Health Survey (SF-36), and the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function 20a short form. The R package “equate” was used to establish conversion tables of PF scores on those measures with a bivariate rank correlation of at least 0.75.ResultsIn total, 953 patients with cancer (mean age 58.9 years, 54.7% men …

Background The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.Methods A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.Results A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers’ well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0 …

BackgroundThe use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended ‘Write In three Symptoms/Problems (WISP)’ instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom.MethodsWe conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their …

ObjectivesBurnout, which is a state of prolonged physical and psychological exhaustion, seems to be a prevalent and serious problem among healthcare workers. Our aim was to investigate the prevalence of burnout symptoms among members of Danish Society of Palliative Medicine (DSPaM).MethodsAll 160 physician members of DSPaM were invited to a questionnaire survey. The Copenhagen Burnout Inventory (CBI) was used to evaluate and differentiate between personal, work-related and client-related burnout.Results76 members responded (47,5%). 51% regularly received supervision. Scores on personal burnout demonstrated that 25% had no symptoms and 55% had symptoms that required attention; however, no respondents needed immediate intervention. Regarding work-related burnout: 40% had no symptoms, 20% had symptoms that needed attention and 3% needed immediate help. Regarding …

PurposeSince 2010, a comprehensive symptom/problem (S/P) assessment has been carried out in Danish specialist palliative care using the EORTC QLQ-C15-PAL questionnaire and the open-ended “Write In three Symptoms/Problems” (WISP) instrument. On WISP patients can report up to three S/Ps not included in the EORTC QLQ-C15-PAL. However, little is known about which S/Ps patients with non-cancer diseases report using WISP. Therefore, we investigated the prevalence and severity of S/Ps reported on WISP by non-cancer patients in specialist palliative care and compared these S/Ps with those previously reported by cancer patients.MethodsThis register-based study collected data from the Danish Palliative Care Database. We included adult patients with non-cancer diseases answering the EORTC QLQ-C15-PAL at admittance to specialist palliative care between 2016 and 2021. WISP responses were …

AimsComputerised adaptive test (CAT) provides individualised patient reported outcome measurement while retaining direct comparability of scores across patients and studies. Optimal CAT measurement requires an appropriate CAT-setting, the set of criteria defining the CAT including start item, item selection criterion, and stop criterion. The European Organisation for Research and Treatment of Cancer (EORTC) CAT Core allows for assessing the 14 functional and symptom domains covered by the EORTC QLQ-C30 questionnaire. The aim was to present a general approach for selecting CAT-settings and to use this to develop a portfolio of standard settings for the EORTC CAT Core optimised for different purposes and populations.MethodsUsing simulations, the measurement properties of CATs of different length and precision were evaluated and compared allowing for identifying the most suitable settings. All …

Objectives Few studies have examined whether access to, and quality of, specialised palliative care changed during the COVID-19 pandemic. This study investigated changes in access to and quality of specialised palliative care during the pandemic in Denmark compared to previously.Methods An observational study using data from the Danish Palliative Care Database combined with other nationwide registries was conducted, including 69 696 patients referred to palliative care services in Denmark from 2018 to 2022. Study outcomes included number of referrals and admissions to palliative care, and the proportions of patients fulfilling four palliative care quality indicators. The indicators assessed admissions among referred, waiting time from referral to admission, symptom screening using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care …

BackgroundThe population of immigrants in Europe is ageing. Accordingly, the number of immigrants with life-threatening diseases and need for specialised palliative care will increase. In Europe, immigrants’ admittance to specialised palliative care is not well explored.AimTo investigate whether country of origin was associated with admittance to (I) palliative care team/unit, (II) hospice, and/or (III) specialised palliative care, overall (i.e. palliative care team/unit and/or hospice).DesignData sources for the population cohort study were the Danish Palliative Care Database and several nationwide registers. We investigated the associations between country of origin and admittance to specialised palliative care, overall, and to type of palliative care using logistic regression analyses.Setting/participants.In 2010–2016, 104,775 cancer patients died in Denmark: 96% were born in Denmark, 2% in other Western countries …

'Livet før døden' - en illustration af palliativ indsats: Filmanmeldelse — The Capital Region of Denmark's Research Portal Skip to main navigation Skip to search Skip to main content The Capital Region of Denmark's Research Portal Home The Capital Region of Denmark's Research Portal Logo Help & FAQ Dansk English Home Hospitals/departments Researchers Research output Activities Prizes Search by expertise, name or affiliation 'Livet før døden' - en illustration af palliativ indsats: Filmanmeldelse Mogens Grønvold Department of Geriatric and Palliative Medicine, Bispebjerg and Frederiksberg Hospital Palliative Research Unit, Geriatric and Palliative Department GP Overview Original language Danish Journal Bibliotek for Læger Volume 215 Pages (from-to) 226-233 Number of pages 8 ISSN 0906-5407 Publication status Published - 1 Sep 2023 Cite this APA Standard Harvard Vancouver Author BIBTEX RIS …

AimThe European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (QLQ-C30) is among the most widely used patient-reported outcome measures in cancer research and practice. It was developed prior to guidance that content should be established directly from patients to confirm it measures concepts of interest and is appropriate and comprehensive for the intended population. This study evaluated the content validity of the QLQ-C30 for use with cancer patients.MethodsAdults undergoing cancer treatment in Europe and the USA participated in open-ended concept elicitation interviews regarding their functional health, symptoms, side-effects and impacts on health-related quality of life. Thematic analysis was conducted, and similarities across cancer types, disease stages and countries or languages were explored.ResultsInterviews with 113 patients with cancer (85 …

Patients’ experiences using Patient Reported Outcome Measures in basic palliative care — University of Southern Denmark Skip to main navigation Skip to search Skip to main content University of Southern Denmark Home University of Southern Denmark Logo Help & FAQ Dansk English Home Researchers Research units Research output Activities Projects Press / Media Prizes Teaching Impacts Datasets Search by expertise, name or affiliation Patients’ experiences using Patient Reported Outcome Measures in basic palliative care Cecilie Lindström, Tina Broby Mikkelsen, Ida Fritsdal Refer, Kristina Thomassen, Viktoria Nadarajah, Heidi Bergenholtz, Mogens Grønvold, Maiken Bang Hansen, Mikael Skytte, Camilla Lykke, Mette Raunkiær, M. Albrectsen Pain KI, REHPA - The Danish Knowledge Centre for Rehabilitation and Palliative Care Department of Clinical Research KI, OUH, Research unit of OPEN - Open …

PurposeWe investigated the association between health-related quality of life (HRQL) and the severity of hypothyroidism at diagnosis in patients referred to a secondary hospital clinic.MethodsSixty-seven adult patients referred from primary care were enrolled. All patients had newly diagnosed hypothyroidism due to autoimmune thyroiditis and were treated with levothyroxine (LT4). The dose was adjusted according to thyroid function tests aiming at a normal plasma thyrotropin. Patients were stratified according to the severity of hypothyroidism in two different ways: the conventional approach (subclinical or overt hypothyroidism) and a novel approach according to the change (decrease or increase) in plasma level of free triiodothyronine index (FT3I) following LT4 treatment. The ThyPRO-39 questionnaire was used for measurement of HRQL at referral to the Endocrine Outpatient Clinic (higher score corresponds to …

Patient-reported outcomes (PROs), such as symptoms, functioning, and other health-related quality-of-life concepts are gaining a more prominent role in the benefit–risk assessment of cancer therapies. However, varying ways of analysing, presenting, and interpreting PRO data could lead to erroneous and inconsistent decisions on the part of stakeholders, adversely affecting patient care and outcomes. The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials-Innovative Medicines Initiative (SISAQOL-IMI) Consortium builds on the existing SISAQOL work to establish recommendations on design, analysis, presentation, and interpretation for PRO data in cancer clinical trials, with an expanded set of topics, including more in-depth recommendations for randomised controlled trials and single-arm studies, and for defining clinically meaningful …

The use of item libraries for patient-reported outcome (PRO) measurement in oncology allows for the customisation of PRO assessment to measure key health-related quality of life concepts of relevance to the target population and intervention. However, no high-level recommendations exist to guide users on the design and implementation of these customised PRO measures (item lists) across different PRO measurement systems. To address this issue, a working group was set up, including international stakeholders (academic, independent, industry, health technology assessment, regulatory, and patient advocacy), with the goal of creating recommendations for the use of item libraries in oncology trials. A scoping review was carried out to identify relevant publications and highlight any gaps. Stakeholders commented on the available guidance for each research question, proposed recommendations on how to …

Objectives Facilitated advance care planning (ACP) helps family carers’ to be aware of patient preferences. It can improve family carers’ involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the family carers’ involvement in decision making in the last 3 months of the patients’ life and on the family carers’ psychological distress after 3 months of bereavement.Methods Over six European countries, a sample of 162 bereaved family carers returned a bereavement questionnaire. Involvement in decision making was measured with a single item of the Views of Informal Carers–Evaluation of Services Short Form questionnaire. Psychological distress was measured with the Impact of Event Scale (IES).Results No significant effect was found on family carers …

Objectives In line with the World Health Organizations' health definition, patient‐reported outcome (PRO) measures frequently cover aspects of social health. Our study aimed to evaluate the role functioning (RF) and social functioning (SF) contents assessed by PRO measures commonly used in cancer patients. Methods We analysed the item content of the SF and RF domains of the EORTC CAT Core, the EORTC QLQ‐C30, the SF‐36, and the FACT‐G as well as the PROMIS item bank covering the Ability to Participate in Social Roles and Activities. Following an established methodology we linked item content to the International Classification of Functioning, Disability and Health (ICF) framework. Results The content of 85 items was assigned to three ICF components (‘Activities and Participation’, ‘Body Functions’, and ‘Environmental Factors’). The EORTC CAT Core RF items were mostly related to the first‐level …

BackgroundKnowledge about the process and the results of the implementation of clinical guidelines to improve palliative care is limited. A national project aimed at improving the quality of life of advanced cancer patients admitted to specialized palliative care services in Denmark by implementing clinical guidelines for the treatment of pain, dyspnea, constipation, and depression.AimTo investigate the degree of clinical guideline implementation by evaluating the proportion of patients treated according to guidelines among those who qualified (i.e. reported severe symptom level) before and after the 44 palliative care services implemented the guidelines, and how often different types of interventions were provided.DesignThis is a national register-based study.Setting/participantsData from the improvement project were stored in and later obtained from the Danish Palliative Care Database. Adult patients with …

BackgroundPatient-reported physical function (PF) is a key endpoint in cancer clinical trials. Using complex statistical methods, common metrics have been developed to compare scores from different patient-reported outcome (PRO) measures, but such methods do not account for possible differences in questionnaire content. Therefore, the aim of our study was a content comparison of frequently used PRO measures for PF in cancer patients.MethodsRelying on the framework of the International Classification of Functioning, Disability and Health (ICF) we categorized the item content of the physical domains of the following measures: EORTC CAT Core, EORTC QLQ-C30, SF-36, PROMIS Cancer Item Bank for Physical Function, PROMIS Short Form for Physical Function 20a, and the FACT-G. Item content was linked to ICF categories by two independent reviewers.ResultsThe 118 items investigated were assigned …

BackgroundCancer patients may experience a decrease in cognitive functioning before, during and after cancer treatment. So far, the Quality of Life Group of the European Organisation for Research and Treatment of Cancer (EORTC QLG) developed an item bank to assess self-reported memory and attention within a single, cognitive functioning scale (CF) using computerized adaptive testing (EORTC CAT Core CF item bank). However, the distinction between different cognitive functions might be important to assess the patients’ functional status appropriately and to determine treatment impact. To allow for such assessment, the aim of this study was to develop and psychometrically evaluate separate item banks for memory and attention based on the EORTC CAT Core CF item bank. MethodsIn a multistep process including an expert-based content analysis, we assigned 44 items from the EORTC CAT Core CF …

IntroductionEarly 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.MethodsData 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 …