Regional and age differences in specialised palliative care for patients with pancreatic cancer

BACKGROUND: Despite national recommendations, disparities in specialised palliative care (SPC) admittance have been reported. The aims of this study were to characterize SPC admittance in patients with pancreatic cancer in relation to region of residence and age. METHOD: The data sources were two nationwide databases: Danish Pancreatic Cancer Database and Danish Palliative Care Database. The study population included patients (18+ years old) diagnosed with pancreatic cancer from 2011 to 2018. We investigated admittance to SPC, and time from diagnosis to referral to SPC and first contact with SPC to death by region of residence and age. RESULTS: In the study period (N = 5851) admittance to SPC increased from 44 to 63%. The time from diagnosis to referral to SPC increased in the study period and overall, the median time was 67 days: three times higher in Southern (92 days) than in North Denmark Region. The median number of days from diagnosis to referral to SPC was lower in patients ≥70 years (59 days) vs patients < 70 years (78 days), with regional differences between the age groups. Region of residence and age were associated with admittance to SPC; highest for patients in North Denmark Region vs Capital Region (OR = 2.03 (95%CI 1.67–2.48)) and for younger patients (< 60 years vs 80+ years) (OR = 2.54 (95%CI 2.05–3.15)). The median survival from admittance to SPC was 35 days: lowest in Southern (30 days) and highest in North Denmark Region (41 days). The median number of days from admittance to SPC to death was higher in patients < 70 years (40 days) vs ≥ 70 years (31 days), with a difference between age groups in the regions of 1–14 days. CONCLUSIONS: From 2011 to 2018 more patients with pancreatic cancer than previously were admitted to SPC, with marked differences between regions of residence and age groups. The persistently short period of time the patients are in SPC raises concern that early integrated palliative care is not fully integrated into the Danish healthcare system for patients with pancreatic cancer, with the risk that the referral comes so late that the patients do not receive the full benefit of the SPC

Psychometric evaluation of an item bank for computerized adaptive testing of the EORTC QLQ-C30 cognitive functioning dimension in cancer patients

Background The European Organisation of Research and Treatment of Cancer (EORTC) Quality of Life Group is developing computerized adaptive testing (CAT) versions of all EORTC Quality of Life Questionnaire (QLQ-C30) scales with the aim to enhance measurement precision. Here we present the results on the field-testing and psychometric evaluation of the item bank for cognitive functioning (CF). Methods In previous phases (I-III), 44 candidate items were developed measuring CF in cancer patients. In phase IV, these items were psychometrically evaluated in a large sample of international cancer patients. This evaluation included an assessment of dimensionality, fit to the item response theory (IRT) model, differential item functioning (DIF), and measurement properties. Results A total of 1030 cancer patients completed the 44 candidate items on CF. Of these, 34 items could be included in a unidimensional IRT model, showing an acceptable fit. Although several items showed DIF, these had a negligible impact on CF estimation. Measurement precision of the item bank was much higher than the two original QLQ-C30 CF items alone, across the whole continuum. Moreover, CAT measurement may on average reduce study sample sizes with about 35-40% compared to the original QLQ-C30 CF scale, without loss of power. Conclusion A CF item bank for CAT measurement consisting of 34 items was established, applicable to various cancer patients across countries. This CAT measurement system will facilitate precise and efficient assessment of HRQOL of cancer patients, without loss of comparability of results

Confirmatory factor analysis of the thyroid-related quality of life questionnaire ThyPRO

Background and aim. Thyroid diseases are prevalent and chronic. With treatment, quality of life is restored in most, but not all patients. Construct validity of the thyroid-related quality of life questionnaire, ThyPRO, has been established by multi-trait scaling, but not evaluated with more elaborate methods. The purpose of the present study was to evaluate dimensionality of the ThyPRO scales and to attempt to understand possible item misfit through structural equation modeling for categorical data. Methods. The current 84-item version of ThyPRO consists of 13 scales, covering domains of physical (4 scales) and mental (2 scales) symptoms, function and well-being (3 scales) and participation/social function (4 scales). The data were collected from a cross-sectional sample of 907 thyroid patients. One-factor confirmatory models were fitted to each scale, and evaluated by model fit statistics (comparative fit index \u3e 0.95, root mean square error of approximation \u3c 0.08), magnitude of factor loadings, model residual correlations and modification indices (MI). Indications of multi-dimensionality were tested in bi-factor models. Possible item misfit was evaluated in a combined, investigational model. Results. Each ThyPRO scale was adequately represented by a unidimensional model after minor revisions. Eleven items were identified in the unidimensional models as potentially misfitting and were investigated further by multidimensional modeling. Conclusion. Elaborate psychometric modeling supported the construct validity of the ThyPRO. However, 11 potentially misfitting items and 18 items with local dependence to other items are candidates for removal in future item reduction processes

Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up

Purpose: The aim of this study was to develop and ensure the content validity of a new patient-reported outcome measure, the Cancer Patient Empowerment Questionnaire (CPEQ), to measure the level of, desire for, and enablement of empowerment among cancer patients in follow-up. Methods: An iterative process based on: (i) empowerment theories by Zimmerman and Tengland, (ii) a systematic review of questionnaires measuring empowerment or related concepts among cancer patients, (iii) qualitative data from 18 semi-structured interviews with Danish cancer patients in follow-up, (iv) input from a group of eight cancer patients involved as co-researchers and from an expert steering group, and (v) cognitive interviews with 15 cancer patients in follow-up. Results: The items for the CPEQ were developed and revised and 12 versions of the questionnaire were evaluated. The final version consists of 67 items, covering three different dimensions of empowerment: (A) empowerment outcomes consisting of three components: (A1) the intrapersonal-, (A2) interactional-, and (A3) behavioral component, (B) empowerment facilitators (enablement), and (C) the value of empowerment. Conclusions: This study documents the theoretical and empirical basis for the development of the CPEQ and its content validity. The CPEQ provides a tool for researchers to assess the level of, desire for, and enablement of empowerment among cancer patients. The next steps will be to use the CPEQ in a nationwide study of empowerment in cancer follow-up and subsequently shorten the CPEQ based on psychometric methods in order to make it more relevant in clinical studies

Detailed statistical analysis plan for the Danish Palliative care trial (DanPaCT)

Acknowledgements We wish to thank the students who sent out the questionnaires, who entered and compared all data, help with data management, made material blind to the investigators, and were/will be outcome assessors of interventions given. They were: Nicla Rohde Christensen, Ellen Lundorff, Marc Klee Olsen, Charlotte Lund Rasmussen, and Nete Skjødt. This work was funded by the Tryg Foundation [journal number 7-10-0838A] and the Danish Cancer Society [journal number R16-A695]. Other than funding the trial, the funding body had no role in the design, conduct, analysis, or reporting of the present trial.Peer reviewedPublisher PD

Thresholds for clinical importance were established to improve interpretation of the EORTC QLQ-C30 in clinical practice and research

To establish thresholds for clinical importance (TCIs) for the five functioning and nine symptom scales of the EORTC QLQ-C30 questionnaire