Charting public views on the meaning of illness severity.

BACKGROUND: Illness severity is a central principle in multiple priority-setting frameworks, yet there is a paucity of research on public views regarding the meaning of illness severity. This study builds on the findings of a Q methodology study with members of the public that identified four general viewpoints on the meaning of illness severity. Here, we investigate the support for those viewpoints among the Norwegian population. METHODS: Following piloting, the online survey was distributed to a broadly representative sample of the population (March to April 2023). The viewpoints from the earlier Q study were converted into vignettes: Lifespan, Subjective, Objective, and Functioning and Quality of Life (FQoL). The main task in the survey comprised ranking the vignettes and scoring them on a 0-10 visual analogue scale. We describe vignette alignment (from weak to strong) based on four categorisations (C1 to C4). C1 placed all respondents on their top scored vignette(s); C2 required a score of ≥7; C3 was designed to resolve ties; and C4 (which describes vignette membership) required a score of ≥7, a gap of two between vignettes scored ≥7, and did not allow ties. RESULTS: The survey was completed by 1174 individuals; those who completed in ≤3.5 min were excluded. Of the final sample (n = 1094), 98.1% scored at least one vignette ≥7. In C1, 40.2% were aligned with Lifespan, 32.4% with FQoL, 28.9% with Objective, and 16.3% with Subjective. Using the C4 criteria, 55.4% did not have vignette membership, 13.6% had membership with Lifespan, 13.1% with Objective, 11.4% with FQoL, and 6.5% with Subjective. CONCLUSIONS: Severity is an ambiguous term among members of the public. Decisionmakers ought to bear this plurality of meanings in mind, and perhaps reconsider whether using a term as multifaceted as 'severity' is helpful in formulating precise and transparent priority-setting criteria.

Preparing popular views for inclusion in a reflective equilibrium: A case study on illness severity.

Principles for priority setting in health care are typically forged by experts influenced by the normative literature on priority setting. Meanwhile, their implementation is subject to democratic deliberation, political pressures, and administrative bureaucracy. Sometimes expert proposals are democratically rejected. This points towards a problem: on the one hand, the fact that a majority shares a moral belief does not inherently validate this belief. On the other hand, when justifying a position to others, we cannot expect much success without engaging with their moral judgments. In this work we examine the possibility of including so-called popular views in a reflective equilibrium process. In reflective equilibrium processes, we are usually interested in considered judgments rather than mere intuitions. Popular views, arguably, often do not meet this standard. To mitigate this, we propose to bolster popular views by linking them with theoretical frameworks echoing similar moral perspectives. We use illness severity as a case study and show that a set of popular accounts can provide considered judgments that merit inclusion in a publicly informed reflective equilibrium process. This is plausibly a way forward in the search for priority setting principles that are both normatively sound and acceptable to the public. Our method provides a general framework for refining available data on popular views on moral questions, including when we cannot assess the consideredness of such views.

Premature Death as a Normative Concept.

The practical goal of preventing premature death seems uncontroversial. But the term 'premature death' is vague with several, sometimes conflicting definitions. This ambiguity results in several conceptions with which not all will agree. Moreover, the normative rationale behind the goal of preventing premature deaths is masked by the operational definition of existing measures. In this article, we argue that 'premature death' should be recognized as a normative concept. We propose that normative theories should be used to justify measures of premature death to provide them with normative validity and public legitimacy.

A severely fragmented concept: Uncovering citizens' subjective accounts of severity of illness.

Universal healthcare is constrained by national governments' finite health resources. This gives rise to complex priority-setting dilemmas. In several universal healthcare systems, the notion of severity (Norwegian: 'alvorlighet') is a key consideration in priority setting, such that treatments for 'severe' illness may be prioritised even when evidence suggests it would not be as cost-effective as treatment options for other conditions. However, severity is a poorly-defined concept, and there is no consensus on what severity means in the context of healthcare provision - whether viewed from public, academic, or professional perspectives. Though several public preference-elicitation studies demonstrate that severity is considered relevant in healthcare resource distribution, there is a paucity of research on public perceptions on the actual meaning of severity. We conducted a Q-methodology study between February 2021 and March 2022 to investigate views on severity amongst general public participants in Norway. Group interviews (n = 59) were conducted to gather statements for the Q-sort ranking exercises (n = 34). Data were analysed using by-person factor analysis to identify patterns in the statement rankings. We present a rich picture of perspectives on the term 'severity', and identify four different, partly conflicting, views on severity in the Norwegian population, with few areas of consensus. We argue that policymakers ought to be made aware of these differing perspectives on severity, and that there is need for further research on the prevalence of these views and on how they are distributed within populations.

Severity as a moral qualifier of malady.

The overarching aim of this article is to scrutinize how severity can work as a qualifier for the moral impetus of malady. While there is agreement that malady is of negative value, there is disagreement about precisely how this is so. Nevertheless, alleviating disease, injury, and associated suffering is almost universally considered good. Furthermore, the strength of a diseased person's moral claims for our attention and efforts will inevitably vary. This article starts by reflecting on what kind of moral impetus malady incites. We then analyze how severity may qualify this impetus. We do so by discussing the relationship between severity and need, well-being and disvalue, death, urgency, rule of rescue, and distributive justice. We then summarize our thoughts about severity as a moral qualifier. We conclude that severity is, and should continue to be seen, as a morally significant concept that deserves continued attention in the future.

Self-reported cognitive and psychiatric symptoms at 3 months predict single-item measures of fatigue and daytime sleep 12 months after ischemic stroke.

Introduction: Post-stroke fatigue and increased need for daytime sleep are multidimensional and insufficiently understood sequelae. Our aim was to study the relationships of self-reported cognitive and psychiatric symptoms at 3 months with fatigue and daytime sleep at 12 months post-stroke. Methods: Ischemic stroke patients without reported history of dementia or depression completed postal surveys 3- and 12-months post-stroke. At 3 months, psychiatric symptoms were assessed with the Hospital Anxiety and Depression Scale (HADS), and self-reported changes in cognitive symptoms (concentration and memory) compared to pre-stroke were assessed using single-item measures. At 12 months, single-item questions about changes in self-reported difficulties sleeping at night, fatigue and daytime sleep were included. First, we studied whether self-reported cognitive and/or psychiatric symptoms at 3 months were associated with daytime sleep and fatigue at 12 months using multiple logistic regression. Second, we fitted 2 structural equation models (SEMs) predicting fatigue and 2 models predicting daytime sleep. We compared a model where only age, sex, stroke severity (National Institutes of Health Stroke Scale; NIHSS), and difficulties sleeping at night predicted fatigue and daytime sleep at 12 months to a model where mental distress (i.e., a latent variable built of cognitive and psychiatric symptoms) was included as an additional predictor of fatigue and daytime sleep at 12 months. Results: Of 156 patients (NIHSS within 24 hours after admission (mean ± SD) = 3.6 ± 4.3, age = 73.0 ± 10.8, 41% female) 37.9% reported increased daytime sleep and 50.0% fatigue at 12 months. Increased psychiatric symptoms and worsened cognitive symptoms were associated with fatigue and daytime sleep at 12 months, after controlling for NIHSS, age, sex, and difficulties sleeping at night. SEM models including mental distress as predictor showed adequate model fit across 3 fit measures (highest RMSEA = 0.063, lowest CFI and TLI, both 0.975). Models without mental distress were not supported. Conclusion: Self-reported cognitive and psychiatric symptoms at 3 months predict increased daytime sleep and fatigue at 12 months. This highlights the relevance of monitoring cognitive and psychiatric symptoms in the subacute phase post-stroke. However, future research using validated measures of self-reported symptoms are needed to further explore these relationships.

Stroke unit demand in Norway - present and future estimates.

BACKGROUND: All stroke patients should receive timely admission to a stroke unit (SU). Consequently, most patients with suspected strokes - including stroke mimics (SM) are admitted. The aim of this study was to estimate the current total demand for SU bed capacity today and give estimates for future (2020-2040) demand. METHODS: Time trend estimates for stroke incidence and time constant estimates for length of stay (LOS) were estimated from the Norwegian Patient Registry (2010-2015). Incidence and LOS models for SMs were based on data from Haukeland University Hospital (2008-2017) and Akershus University Hospital (2020), respectively. The incidence and LOS models were combined with scenarios from Statistic Norway's population predictions to estimate SU demands for each health region. A telephone survey collected data on the number of currently available SU beds. RESULTS: In 2020, 361 SU beds are available, while demand was estimated to 302. The models predict a reduction in stroke incidence, which offsets projected demographic shifts. Still, the estimated demand for 2040 rose to 316, due to an increase in SMs. A variation of this reference scenario, where stroke incidence was frozen at the 2020-level, gave a 2040-demand of 480 beds. CONCLUSIONS: While the stroke incidence is likely to continue to fall, this appears to be balanced by an increase in SMs. An important uncertainty is how long the trend of decreasing stroke incidence can be expected to continue. Since the most important uncertainty factors point toward a potential increase, which may be as large as 50%, we would recommend that the health authorities plan for a potential increase in the demand for SU bed capacity.

Cycle-network expansion plan in Oslo: Modeling cost-effectiveness analysis and health equity impact.

Physical inactivity is the leading cause of non-communicable diseases, and further research on the cost-effectiveness of interventions that target inactivity is warranted. Socioeconomic status is vital in this process. We aim to evaluate the cost-effectiveness of a cycle-network expansion plan in Oslo compared to the status quo by income quintiles. We applied a Markov model using a public payer perspective. Health outcomes were measured by quality-adjusted life years (QALYs) gained from the prevention of coronary heart disease, stroke, type 2 diabetes, and cancer. We measured equity impact by the concentration index and social welfare using the achievement index. We conducted sensitivity analyses. The intervention was generally more costly and more effective than the status quo. Incremental cost per QALY falls with income quintile, ranging from $10,098 in the richest quintile to $23,053 per QALY gained in the poorest quintile. The base-case intervention increased health inequality. However, a scenario targeting low-income quintiles reduced inequality and increased social welfare. In conclusion, the cycle-network expansion is likely to be cost-effective, but with equity concerns. If decision makers care about health inequalities, the disadvantaged groups could be targeted to produce more equitable and socially desirable outcomes instead of a uniform intervention across income quintiles.

Stroke Mimics on the Stroke Unit - Temporal trends 2008-2017 at a large Norwegian university hospital.

OBJECTIVES: The objective was to quantify temporal trends in stroke mimics (SM) admissions relative to cerebrovascular accidents (CVA), incidence of hospitalized SMs and characterize the SM case-mix at a general hospital's stroke unit (SU). MATERIALS & METHODS: All SU admissions (n = 11240) of patients aged 15 or older to Haukeland University Hospital between 2008-2017 were prospectively included and categorized as CVA or SM. Logistic regression was used to estimate time trends in the proportion of SMs among the admissions. Poisson regression was used to estimate time trends in age- and sex-dependent SM incidence. RESULTS: SMs were on average younger thaan CVA patients (68.3 vs. 71.4 years) and had a higher proportion of females (53.6% vs. 44.5%). The total proportion of SM admissions was 51.0%. There was an increasing time trend in the proportion of SM admissions, odds ratio 1.150 per year (p < 0.001), but this trend appears flattening, represented by a significant quadratic time-term, odds ratio 1.009 (p < 0.001). A higher SM proportion was also associated with the time period of a Mass Media Intervention (FAST campaign) in 2014. There was also an increasing trend in SM incidence, that remains after adjusting for age, sex, and population; also, for incidence the trend appears to be flattening. CONCLUSIONS: SMs account for approximately half of the SU admissions, and the proportion has been increasing. A FAST campaign appears to have temporarily increased the SM proportion. The age- and sex-dependent incidence of SM has been increasing but appears to flatten out.

Nursing students' evaluation of clinical learning environment and supervision in a Norwegian hospital placement - A questionnaire survey using CLES+T scale.

AIM: The clinical learning environment and supervisor-student relationship play vital roles in the learning outcomes of nursing students. The aim of this study is to evaluate nursing students' experiences with the clinical learning environment and supervision in a hospital placement organised with a dual preceptor team - preceptors holding dual positions both in the clinic and the nursing faculty in addition to the standard one-to-one supervision by a clinical preceptor. DESIGN: The study is a paper-based survey based on a validated questionnaire developed and tested in hospital settings in various European countries, including Norway. METHOD: The Norwegian version of the CLES+T Evaluation Scale, was distributed to all second-year students in three different years (2015-2017) at a nursing faculty. RESULTS: A total of 61% students (n = 261) returned the questionnaire. Overall, the students considered that their hospital placement provided a good clinical learning environment. The results suggest that the dual preceptor team on top of one-to-one supervision did not interfere negatively with the clinical learning environment Nevertheless, the dual preceptor model did not compensate for a poor relationship with the clinical preceptor. Thus, the association between a reported 'strained relationship' with the clinical preceptor and low scores on the CLES+T, reported on by other studies, remained in our data. CONCLUSIONS: To better grasp the complexity in this area, various methods are needed, such as in-depth interviews with students, nurse teachers and clinical preceptors. Further studies need to elaborate on students' experiences of clinical learning environment according to how supervision is organised.

The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study.

PURPOSE: To describe the health-related quality of life (HRQoL) of caregivers and survivors of transient ischaemic attack (TIA) and stroke during one year post discharge in comparison to age- and sex-matched population norms; and to analyse the association of initial stroke severity, measured by a routinely used stroke-specific scale, on subsequent HRQoL of caregivers and survivors. METHODS: Cohort of hospitalized patients with TIA and stroke discharged alive from a large university hospital in Norway, and their informal caregivers. Questionnaires at 3 and 12 months post discharge were filled out by caregivers (n = 320 and n = 326, respectively) and survivors (n = 368 and n = 383, respectively). Multivariable linear regression analyses tested associations between initial stroke severity (National Institutes of Health Stroke Scale, NIHSS) and HRQoL (EQ-5D-3L) in caregivers and survivors. RESULTS: Caregivers of survivors with TIA or stroke did not report lower HRQoL than matched norms. There was some evidence of an association of the NIHSS with caregiver HRQoL at 3 months only (age-sex-adjusted coefficient - 0.01, p = 0.008), however, this was attenuated after additional adjustments. Survivors with stroke, but not TIA, reported lower HRQoL than population norms at both time points. There was a negative association between higher NIHSS scores and survivors' HRQoL; fully adjusted coefficient - 0.01 at both time points (p = 0.001). CONCLUSION: The informal caregivers and survivors with TIA did not report lower than expected HRQoL. Increasing stroke severity was associated with decreasing HRQoL among survivors, but had limited predictive value among caregivers. Other factors may therefore be better indicators of 'at risk' caregivers.

Using the Choice Sequence in Time Trade-Off as Discrete Choices: Do the Two Stories Match?

OBJECTIVES: The EQ-5D-5L valuation protocol recommends combining time trade-off (TTO) and discrete choice experiments (DCEs). DCEs that include a duration attribute (DCETTO) allow modeling on the quality-adjusted life-year scale. Because the choice sequence in a TTO can be construed as a series of DCETTO, we used data from a single TTO study to investigate the extent to which DCE values match TTO values when based on identical preferences. METHODS: In a TTO design in which a fixed set of choices were administered without termination at preference indifference, 202 individuals each valued 10 EQ-5D health states. From identified indifference points, we estimated three sets of TTO values: (i) plotting means and (ii) applying censored regressions at -1 and 1. Using all strict preferences, we (iii) estimated DCETTO values with a logit model and a bootstrap procedure. RESULTS: Estimated DCETTO and TTO values agreed well at the severe end of the quality-adjusted life-year scale, but with decreasing severity, DCETTO values were higher than TTO-values, with the difference peaking at 0.37 for the mildest health state. Left-censoring TTO values at -1 worsen the agreement for the worst health states and did not affect health states. Right censoring at 1 improved the agreement for mild states. CONCLUSIONS: TTO and the DCETTO values estimated from the same preference data diverged, with increasing difference for milder health states. Although the values converged when applying censored regression at +1, we question the validity of this adjustment.

A Markov chain method for counting and modelling migraine attacks.

To ensure reproducibility in research quantifying episodic migraine attacks, and identifying attack onset, a sound theoretical model of a migraine attack, paired with a uniform standard for counting them, is necessary. Many studies report on migraine frequencies-e.g. the fraction of migraine-days of the observed days-without paying attention to the number of discrete attacks. Furthermore, patients' diaries frequently contain single, migraine-free days between migraine-days, and we argue here that such 'migraine-locked days' should routinely be interpreted as part of a single attack. We tested a simple Markov model of migraine attacks on headache diary data and estimated transition probabilities by mapping each day of each diary to a unique Markov state. We explored the validity of imputing migraine days on migraine-locked entries, and estimated the effect of imputation on observed migraine frequencies. Diaries from our patients demonstrated significant clustering of migraine days. The proposed Markov chain model was shown to approximate the progression of observed migraine attacks satisfactorily, and imputing on migraine-locked days was consistent with the conceptual model for the progression of migraine attacks. Hence, we provide an easy method for quantifying the number and duration of migraine attacks, enabling researchers to procure data of high inter-study validity.

Do not despair about severity-yet.

In a recent extended essay, philosopher Daniel Hausman goes a long way towards dismissing severity as a morally relevant attribute in the context of priority setting in healthcare. In this response, we argue that although Hausman certainly points to real problems with how severity is often interpreted and operationalised within the priority setting context, the conclusion that severity does not contain plausible ethical content is too hasty. Rather than abandonment, our proposal is to take severity seriously by carefully mapping the possibly multiple underlying accounts to well-established ethical theories, in a way that is both morally defensible and aligned with the term's colloquial uses.

The Devils in the DALY: Prevailing Evaluative Assumptions.

In recent years, it has become commonplace among the Global Burden of Disease (GBD) study authors to regard the disability-adjusted life year (DALY) primarily as a descriptive health metric. During the first phase of the GBD (1990-1996), it was widely acknowledged that the DALY had built-in evaluative assumptions. However, from the publication of the 2010 GBD and onwards, two central evaluative practices-time discounting and age-weighting-have been omitted from the DALY model. After this substantial revision, the emerging view now appears to be that the DALY is primarily a descriptive measure. Our aim in this article is to argue that the DALY, despite changes, remains largely evaluative. Our analysis focuses on the understanding of the DALY by comparing the DALY as a measure of disease burden in the two most significant phases of GBD publications, from their beginning (1990-1996) to the most recent releases (2010-2017). We identify numerous assumptions underlying the DALY and group them as descriptive or evaluative. We conclude that while the DALY model arguably has become more descriptive, it remains, by necessity, largely evaluative.

Severity as a Priority Setting Criterion: Setting a Challenging Research Agenda.

Priority setting in health care is ubiquitous and health authorities are increasingly recognising the need for priority setting guidelines to ensure efficient, fair, and equitable resource allocation. While cost-effectiveness concerns seem to dominate many policies, the tension between utilitarian and deontological concerns is salient to many, and various severity criteria appear to fill this gap. Severity, then, must be subjected to rigorous ethical and philosophical analysis. Here we first give a brief history of the path to today's severity criteria in Norway and Sweden. The Scandinavian perspective on severity might be conducive to the international discussion, given its long-standing use as a priority setting criterion, despite having reached rather different conclusions so far. We then argue that severity can be viewed as a multidimensional concept, drawing on accounts of need, urgency, fairness, duty to save lives, and human dignity. Such concerns will often be relative to local mores, and the weighting placed on the various dimensions cannot be expected to be fixed. Thirdly, we present what we think are the most pertinent questions to answer about severity in order to facilitate decision making in the coming years of increased scarcity, and to further the understanding of underlying assumptions and values that go into these decisions. We conclude that severity is poorly understood, and that the topic needs substantial further inquiry; thus we hope this article may set a challenging and important research agenda.

Patient and service factors associated with referral and admission to inpatient rehabilitation after the acute phase of stroke in Australia and Norway.

BACKGROUND: Unequal access to inpatient rehabilitation after stroke has been reported. We sought to identify and compare patient and service factors associated with referral and admission to an inpatient rehabilitation facility (IRF) after acute hospital care for stroke in two countries with publicly-funded healthcare. METHODS: We compared two cohorts of stroke patients admitted consecutively to eight acute public hospitals in Australia in 2013-2014 (n = 553), and to one large university hospital in Norway in 2012-2013 (n = 723). Outcomes were: referral to an IRF; admission to an IRF if referred. Logistic regression models were used to identify and compare factors associated with each outcome. RESULTS: Participants were similar in both cohorts: mean age 73 years, 40-44% female, 12-13% intracerebral haemorrhage, ~ 77% mild stroke (National Institutes of Health Stroke Scale < 8). Services received during the acute admission differed (Australia vs. Norway): stroke unit treatment 82% vs. 97%, physiotherapy 93% vs. 79%, occupational therapy 83% vs. 77%, speech therapy 78% vs. 13%. Proportions referred to an IRF were: 48% (Australia) and 37% (Norway); proportions admitted: 35% (Australia) and 28% (Norway). Factors associated with referral in both countries were: moderately severe stroke, receiving stroke unit treatment or allied health assessments during the acute admission, living in the community, and independent pre-stroke mobility. Directions of associations were mostly congruent; however younger patients were more likely to be referred and admitted in Norway only. Models for admission among patients referred identified few associated factors suggesting that additional factors were important for this stage of the process. CONCLUSIONS: Similar factors were associated with referral to inpatient rehabilitation after acute stroke in both countries, despite differing service provision and access rates. Assuming it is not feasible to provide inpatient rehabilitation to all patients following stroke, the criteria for the selection of candidates need to be understood to address unwanted biases.

Fewer ischemic strokes, despite an ageing population: stroke models from observed incidence in Norway 2010-2015.

BACKGROUND: Stroke incidence rates have fallen in high-income countries over the last several decades, but findings regarding the trend over recent years have been mixed. The aim of the study was to describe and model temporal trends in incidence of stroke by age and sex between 2010 and 2015 in Norway, and to generate incidence projections towards year 2040. METHODS: All recorded strokes in Norway between 2010 and 2015 were extracted from the National Patient Registry and the National Cause of Death Registry. We report incidence by age, sex, and year; in raw numbers, per 100,000 person-years, by WHO and European standard populations; and generated statistical models by stroke type, age, sex, and year; and projected stroke incidence toward year 2040. RESULTS: The data covered 30.1 million person-years at risk, 53431 unique individuals hospitalized with a primary stroke diagnosis, and 6315 additional individuals registered as dead due to stroke. From 2010 to 2015, individuals suffering stroke per 100,000 person-years dropped from 239 to 195 (208 to 177 excluding immediate deaths). The decline was driven by ischemic strokes, with a statistically non-significant time trend for hemorrhagic stroke. CONCLUSIONS: The age-dependent incidence of ischemic strokes in Norway is declining rapidly, and more than compensates for the growth and ageing of the population. Comparisons with historic incidence statistics show that the reduction in incidence rates has accelerated over the last two decades.

Stroke-Related Knowledge and Lifestyle Behavior among Stroke Survivors.

AIMS: Awareness of stroke symptoms and risk factors, and actions taken in order to reduce the risk of new stroke events, should be of great importance among stroke survivors. The aims of this study were to assess changes in stroke-related knowledge and lifestyle behavior among patients experiencing a cerebrovascular event, and to assess the agreement between the patients' self-reported diagnosis, and the discharge diagnosis. METHODS: All patients discharged with a diagnosis of stroke or transient ischemic attack during a 1-year period, received postal survey questionnaires at 3 and 12 months after discharge. The questionnaires included questions about symptom knowledge, lifestyle behavior, and patients were asked to report on their diagnosis. RESULTS: A total of 282 patients were included (mean age 71.8 years, 57.1% men). Self-reported symptom knowledge was increased at 3 months (P < .001), and this persisted at 12 months. There was a poor correlation (r = .082; P = .171) between increasing symptom knowledge and stated lifestyle behavior changes. In all, 63% of the respondents correctly identified their own cerebrovascular subtype. Thirty-seven percent had quit smoking after 12 months, 30% reported that they used less sugary items, and 26% used less fatty food after the cerebrovascular event. CONCLUSIONS: Stroke survivors reported increased stroke symptoms knowledge after 3 and 12 months. A proportion of patients made changes in lifestyle behavior. Only 2 out of 3 patients correctly identified their own cerebrovascular subtype, indicating room for improvement in clinical practice when informing and communicating with stroke and transient ischemic attack patients about their diagnosis.