Classification Into Different Patient Groups-A Step Toward Tailoring Care After Major Oncological Surgery?

Objective: To evaluate how the distribution of patients in groups (based on subjective health experience) changes over time and to investigate differences in physical functioning and mental health between these patient groups. Design: An observational cohort study. Setting: University medical center. Participants: Patients who underwent gastrointestinal or bladder oncological surgery (N=98). Interventions: Not applicable. Main Outcome Measures: The classification of patients into different groups based on the subjective health experience model (acceptance and perceived control), preoperatively and 1 and 3 months after discharge. Results: In total, 98 patients were included. Preoperatively, 31% of the patients were classified as having low acceptance and perceived control (group 4), and this proportion increased to 47% and 45% 1 and 3 months after discharge, respectively. These patients had significantly lower levels of physical functioning (preoperatively, 55 vs 61; P=.030; 1 month, 47 vs 57; P=.002; 3 months, 52 vs 62; P=.006) and higher levels of anxiety and depression (preoperatively, 14 vs 9; P<.001; 1 month, 11 vs 3; P=.001; 3 months, 10 vs 3; P=.009) than patients with high acceptance and perceived control (group 1). Conclusions: The classification of patients to different groups provides insight in different levels of physical and mental health. However, frequent evaluation is important because of changes in patient groups over time.

Including 'Work as a Treatment Goal' in the Care for Patients with Chronic Diseases : The Development of a Generic Care Model-A Descriptive Study.

BACKGROUND: The Netherlands faces 60% prevalence of chronic conditions by 2040, impacting societal participation and quality of life. Current clinical care inadequately addresses these consequences, and most hospitals do not integrate occupational health in their care. OBJECTIVES: To develop a generic person- and work-oriented medical care model (WMCM) based on real life experiences with work-oriented care and supporting the chronically ill in active societal participation. METHODS: A qualitative research project with a participative approach in one hospital (November 2019 until March 2020). In an expert meeting, a schematic representation of a work-oriented care model was developed. Subsequent discussion rounds, with professionals from different patient groups, iteratively refined the model to a WMCM. RESULTS: Consensus was reached after seven rounds of discussion, defining the model's core elements (1) a combination of biomedical and biopsychosocial approaches, (2) involvement of a clinical occupational physician in the treatment team, (3) a coordinating role for nursing specialists, and (4) incorporation of a work-oriented intervention plan (WoIP) into the treatment plan. Advocating early attention to societal participation, the model emphasises the WoIP and consensus on monitoring indicators. The final goal is a sustainable return to societal participation, considering both quality of life and work. CONCLUSION: It is feasible to develop a generic person- and work-oriented care model for patients with chronic illness within a hospital care setting. Collaboration between healthcare professionals and a specialised occupational physician, with a central role for nurses, is deemed crucial.

External Validity and Consistency over Time of Patient Segmentation Based on Disease Acceptance and Perceived Control in Inflammatory Bowel Disease.

BACKGROUND AND AIMS: The patient segmentation model based on disease acceptance and perceived control may guide personalized care in inflammatory bowel disease (IBD). We aimed to investigate the external validity of the segmentation model and its consistency over time. METHODS: This is a multicenter longitudinal cohort study of adult IBD patients with questionnaires on disease acceptance and perceived control (6-items, 7-point Likert scale) and health-related quality of life (HRQoL) (Short IBD questionnaire, range 10-70). Segments were created based on mean scores (cut-off>5): (I) high acceptance, high control; (II) high acceptance, low control; (III) low acceptance, high control and; (IV) low acceptance, low control. RESULTS: The external validation cohort included 921 IBD patients. The acceptance and control scale were unidimensional and internally consistent. Segments differed significantly in gender, disease duration, IBD medication and clinical disease activity. High acceptance and/or high control were significantly associated with a higher HRQoL compared with low acceptance and low control (i.e., segment IV) (Beta (95%CI) segment I=11.7 (10.4-13.1), segment II=9.3 (7.7-10.9) and segment III=3.8 (1.6-6.0), p≤0.001). The follow-up cohort included 783 patients: 58% remained in the same segment while 42% differed in segment over time. Changes in segment were positively correlated with changes in HRQoL over time (Spearman rho 0.38, p<0.001). CONCLUSIONS: The patient segmentation model based on disease acceptance and perceived control was externally valid and showed consistency over time. The different segments were independently associated with HRQoL. Future interventions should aim to personalize care based on segments and improve disease acceptance and perceived control of IBD patients.

TripleAiM1: a nationwide registry of de novo metastatic hormone-sensitive prostate cancer with prospective quality-of-life assessment.

INTRODUCTION: The treatment landscape for de novo metastatic hormone sensitive prostate cancer (mHSPC) is rapidly evolving. With an abundance of available treatment strategies, selecting the optimal strategy for an individual patient is becoming increasingly challenging. TripleAiM1 aims to evaluate the impact of mHSPC treatments on health-related quality of life (HRQoL) and to provide real-world data insights on diagnostics, treatment strategies, patient subgroups and related healthcare expenditure for mHSPC. The aspirational target of TripleAiM1 is that in the near future, a more tailored therapy can be offered based on the individual patient's wishes and needs in accordance with the overarching principle of value-based healthcare. METHODS AND ANALYSIS: We describe the TripleAiM1 study design; a nationwide registry comprising a retrospective and prospective cohort of patients with de novo mHSPC. Starting in May 2020, eligible patients are identified, selected and recruited in 14 participating hospitals in the Netherlands. Our hypothesis is that, in a real-world setting, differences in clinically meaningful HRQoL deterioration will be observed for treatment strategies over time. HRQoL data, assessed with patient-reported outcome measures, costs and clinical data will be collected for 24 months.For the retrospective cohort, all patients diagnosed with de novo mHSPC from January 2017 onwards are eligible for inclusion. Patient and tumour characteristics, imaging modalities and treatment patterns will be analysed descriptively to provide a real-world overview.Time-to-event endpoints will be assessed using the Kaplan-Meier method and regression models will be employed to analyse baseline characteristics associated with an increased likelihood of death, progression and HRQoL deterioration. Longitudinal mixed-effects models will be employed to assess change of patient-reported outcome scores from baseline until the end of follow-up. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Medical Research Ethics Committee, Twente. Study results will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NL9719.

Rethinking the eidos, genos, and diaphora of the health utility concept: a psychological perspective.

The notion of utility gained a strong foothold in health economics over the last decades. However, the concept of health utility has not yet been decisively or irrefutably defined and the definitions that exist often do not take into account the current state of psychological literature. This perspective paper shows that the current definition of health utility emphasizes decision-making processes, deploys personal preferences, assumes psychological egoism, and attempts to objectively and cardinally measure utility. However, these foundational axioms that underly the current definition of health utility are not necessarily in concurrence with the current state of psychological literature. Due to these perceived shortcomings of the current health utility definition, it may be beneficial to redefine the concept of health utility in accordance with the current state of psychological literature. In order to develop such a revised definition of health utility the commonly deployed formula (Eidos = Genos + Diaphora) originating from Aristotle's metaphysics is applied. The revised definition of health utility proposed in this perspective paper alludes to health utility as 'the subjective value, expressed in terms of perceived pain or pleasure, that is attributed to the cognitive, affective and conative experience of one's own physical, mental and social health state, which is determined through self-reflection and interaction with significant others'. Although this revised definition does neither replace nor supersede other conceptualizations of health utility, it may serve as a refreshing avenue for further discussion and could, eventually, support policymakers and health economists in operationalizing and measuring health utility in an even more accurate and veracious manner.

Determining the Appropriate Support for Older Adults with Different Levels of Vitality and Health-Related Quality of Life: An Explanatory Study.

Vitality and health-related quality of life are often assessed in older adults. However, these assessments do not provide guidance on support for older adults with different levels of vitality and health-related quality of life. This guidance can be established through segmentation. The Subjective Health Experience model segments individuals and indicates support for each segment. By examining how older adults with different levels of vitality and health-related quality of life correspond with each segment and by specifying the indicated support to older adults, guidance can be established. This was examined by administering a questionnaire to 904 older adults and interviewing 8. Analysis was performed using one-way ANOVA and the matrix method. In segment 1, older adults sustained higher levels of vitality and health-related quality of life relative to other segments. They need information and certainty. In segment 2, older adults sustained lower levels of vitality and health-related quality of life relative to segment 1, and higher levels relative to segment 3 or 4. They need planning and structure. In segment 3, older adults sustained lower levels of vitality and health-related quality of life relative to segment 1 or 2, and higher levels relative to segment 4. They need emotive assistance. In segment 4, older adults sustained lower levels of vitality and health-related quality of life relative to other segments. They need personal coaching. As levels of vitality and health-related quality of life correspond with the segments, deploying vitality and health-related quality of life measures together with the model might be beneficial.

Health State Questionnaires Deployed in Ulcerative Colitis Patients: The Medical, Psychological, and Economic Perspective.

Background and Aims: To determine how the health state of ulcerative colitis patients is impacted by their disease, different health state questionnaires are deployed. This study examines to what extent these health state questionnaires determine the same underlying health state concept and to what extent the complementary use of the health state questionnaires has added value for physicians. Methods: In total, 307 patients were enrolled in this cross-sectional multicenter cohort study. Medical, psychological, economic, and composite health state questionnaires were administered to determine reliability, convergent validity, and explained variance. Reliability was determined using Cronbach's alpha. Convergent validity was measured using Spearman's correlation coefficients. Explained variance was interpreted using R-squared coefficients. Results: All questionnaires can be considered reliable. The medical, psychological, and economic health state questionnaires show weak to moderate convergent validity with each other. The medical, psychological, and economic health state questionnaires also explain limited variance in each other's outcomes. The composite health state questionnaire shows moderate to strong convergent validity with the other health state questionnaires. The composite health state questionnaire further explains considerable variance in the outcomes of the other health state questionnaires. Conclusion: Deploying divergent medical, psychological, and economic health state questionnaires may have added value as they provide a multiperspective holistic insight into patients' health states. Deploying the composite health state questionnaire combined with other health state questionnaires may have added value as it provides additional understanding of their outcomes. Deploying an independent psychological health state questionnaire may have added value as it shows particularly limited convergent validity and explained variance regarding other health state questionnaires.

Differences between expert reported and patient reported burden of disease rankings.

Many attempted to develop burden of disease rankings for the purpose of resource allocation, priority setting, cost-effectiveness evaluation, and service development in healthcare. As this proved difficult the World Health Organization commissioned expert panels to develop internally consistent burden of disease rankings. Although these rankings provide valuable insight in the biomedical burden of different diseases, they do not yet provide insight in the psychological burden of different diseases experienced and reported by patients on a daily basis. Since expert reported and patient reported burden of disease could differ, deviations between expert reported and patient reported burden of disease rankings are likely. To explore how these rankings differ, it is important to develop patient reported burden of disease rankings and compare these to expert reported burden of disease rankings. In this study patient reported burden of disease rankings were developed by ranking the subjective health experience of patients. To measure subjective health experience an online questionnaire was administered to a large panel of Dutch citizens. The final sample consisted of 58,490 panel members. This final sample contained 36 diseases and was largely representative of the Dutch population. The data were analysed by using reliability tests, descriptive statistics and Spearman rank-order correlation coefficients. This study shows that expert reported and patient reported burden of disease rankings could differ. Burden of cardiovascular diseases ranks low on patient reported burden of disease rankings, while it ranks higher on expert reported burden of disease rankings. Burden of psychiatric diseases and gastrointestinal diseases ranks high on patient reported burden of disease rankings, while it ranks lower on expert reported burden of disease rankings. Burden of pain diseases ranks high on patient reported burden of disease rankings, while it is still overlooked in expert reported burden of disease rankings. This study suggests that it can be beneficial to develop and utilize patient reported burden of disease rankings in addition to the already existing expert reported burden of disease rankings in order to establish a more comprehensive perspective on burden of disease. This could improve decision-making on resource allocation, priority setting, cost-effectiveness evaluation, and service development in healthcare.

Acceptance and Perceived Control are Independently Associated With Quality of Life in Inflammatory Bowel Disease: Introduction of a New Segmentation Model.

BACKGROUND AND AIMS: Segmentation of patients based on psychological determinants of subjective health may provide new ways to personalized care. The cross-disease segmentation model developed by Bloem & Stalpers discriminates patients based on disease acceptance and perceived control. We aimed to validate the segmentation model, compare segments and evaluate whether segments independently correlate with quality of life in inflammatory bowel disease [IBD]. METHODS: A cross-sectional study of adult IBD patients was performed with questionnaires on quality of life [32-item inflammatory bowel disease questionnaire], acceptance and perceived control [six items with 7-point Likert scale]. Four segments were formed [cut-off > 5]: [I] high acceptance, high control; [II] high acceptance, low control [III]; low acceptance, high control and; [IV] low acceptance, low control. RESULTS: We included 686 patients. The acceptance and perceived control scales were unidimensionally structured and internally consistent. Segments differed significantly in age, smoking behaviour, diagnosis, disease duration, extra-intestinal manifestations, IBD medication, clinical disease activity and quality of life. High acceptance (standardized beta coefficient [ß] 0.25, p < 0.001), high perceived control [ß 0.12, p < 0.001] or both [ß 0.53, p < 0.001], were associated with a significantly better health-related quality of life compared with low acceptance and low perceived control. Sociodemographic and clinical factors explained 25% of the variance in quality of life. The explained variance significantly increased to 45% when the patients' segment was added to the model [ΔR2 20%, p < 0.001]. CONCLUSIONS: The segmentation model based on disease acceptance and perceived control is valid in IBD patients and discriminates different segments that correlate independently with quality of life. This may open new strategies for patient care.

Segmentation of health-care consumers: psychological determinants of subjective health and other person-related variables.

BACKGROUND: There is an observable, growing trend toward tailoring support programs - in addition to medical treatment - more closely to individuals to help improve patients' health status. The segmentation model developed by Bloem & Stalpers [Nyenrode Research Papers Series 12:1-22, 2012] may serve as a solid basis for such an approach. The model is focused on individuals' 'health experience' and is therefore a 'cross-disease' model. The model is based on the main psychological determinants of subjective health: acceptance and perceived control. The model identifies four segments of health-care consumers, based on high or low values on these determinants. The goal of the present study is twofold: the identification of criteria for differentiating between segments, and profiling of the segments in terms of socio-demographic and socio-economic variables. METHODS: The data (acceptance, perceived control, socio-economic, and socio-demographic variables) for this study were obtained by using an online survey (a questionnaire design), that was given (random sample N = 2500) to a large panel of Dutch citizens. The final sample consisted of 2465 participants - age distribution and education level distribution in the sample were similar to those in the Dutch population; there was an overrepresentation of females. To analyze the data factor analyses, reliability tests, descriptive statistics and t-tests were used. RESULTS: Cut-off scores, criteria to differentiate between the segments, were defined as the medians of the distributions of control and acceptance. Based on the outcomes, unique profiles have been formed for the four segments: 1. 'Importance of self-management' - relatively young, high social class, support programs: high-quality information. 2. 'Importance of personal control' - relatively old, living in rural areas, high in homeownership; supportive programs: developing personal control skills. 3. 'Importance of acceptance' - relatively young male; supportive programs: help by physicians and nurses. 4. 'Importance of perspective and direction' - female, low social class, receiving informal care; support programs: counseling and personal care. CONCLUSIONS: The profiles describe four segments of individuals/patients that are clearly distinct from each other, each with its own description. The enriched descriptions provide a better basis for the allocation and developing of supportive programs and interventions across individuals.