Incidence of Clinically Diagnosed Psoriatic Arthritis in Sweden.

OBJECTIVE: Prior incidence estimates of psoriatic arthritis (PsA) vary considerably. We aimed to assess the annual incidence of clinically diagnosed PsA among adults in Sweden in 2014-2016, overall and stratified by age/sex/education/geography, and to investigate potential time trends in incidence in 2006-2018. Use of disease-modifying antirheumatic drugs (DMARDs) during the 2 years after diagnosis was also examined. METHODS: Patients (aged ≥ 18 years) with incident clinically diagnosed PsA in Sweden were identified from the National Patient Register (NPR) and/or the Swedish Rheumatology Quality Register (SRQ). Population statistics, stratification variables, and DMARD information were retrieved from other nationwide registers. Incidence was estimated according to a base case (BC) definition (ie, ≥ 1 main International Classification of Diseases, 10th revision, diagnosis of PsA [L40.5/M07.0-M07.3] from rheumatology/internal medicine in NPR, or a PsA diagnosis in SRQ during the relevant year, and no prior such diagnoses) and 4 different sensitivity analysis case definitions. RESULTS: The mean annual incidence of clinically diagnosed PsA among adults in Sweden in 2014-2016 was estimated at 21.77 per 100,000 person-years (PYs) at risk, according to the BC definition; 17.41 per 100,000 PYs at risk after accounting for diagnostic misclassification; and 15.78 to 28.83 per 100,000 PYs at risk across all sensitivity analyses. Incidence was slightly higher in female individuals, was lower in those with higher education (aged > 12 years), and peaked during the ages of 50 to 59 years. No apparent increasing or decreasing time trend was observed in 2006-2018. Within 2 years of diagnosis, 71.03% of patients had received DMARD therapy (22.37% biologic or targeted synthetic DMARDs). CONCLUSION: From 2014 to 2016, the annual incidence of clinically diagnosed PsA in the adult Swedish population was approximately 20 per 100,000 PYs at risk. Two years after diagnosis, almost three-quarters of patients had received DMARD therapy.

Mortality in patients with psoriatic arthritis in Sweden: a nationwide, population-based cohort study.

OBJECTIVES: To compare all-cause mortality and causes of death between patients with psoriatic arthritis (PsA) and the general population in Sweden. METHODS: Adults with at least one main PsA diagnosis (International Classification of Diseases-10: L40.5/M07.0-M07.3) from outpatient rheumatology/internal medicine departments 2001-2017 were identified from the National Patient Register. Each case was matched to five population comparator-subjects on sex/county/age at the case's first arthritis diagnosis. Follow-up ran from 1 January 2007, or from first PsA diagnosis thereafter, until death, emigration or 31 December 2018. Mortality was assessed overall, and stratified by sex and duration since diagnosis (diagnosis before/after 1 January 2007), using matched Cox proportional hazard regression (excluding/including adjustments for comorbidity) or Breslow test, as appropriate. Incidence rate ratios (IRR) of death, overall and stratified by sex/duration since diagnosis/age, as well as causes of death in PsA cases and comparator-subjects were also described. RESULTS: All-cause mortality was elevated in PsA (HR: 1.11 (95% CI: 1.07 to 1.16); IRR: 1.18 (95% CI: 1.13 to 1.22)), mainly driven by increased risks in women (HR: 1.23 (95% CI: 1.16 to 1.30)) and cases with longer time since diagnosis (HR: 1.18 (95% CI: 1.12 to 1.25)). IRR of death were significantly increased for all ages except below 40 years, with the numerically highest point-estimates for ages 40-59 years. When adjusted for comorbidity, however, the elevated mortality risk in PsA disappeared. Causes of death were similar among PsA cases/comparator-subjects, with cardiovascular disease and malignancy as the leading causes. CONCLUSIONS: Mortality risk in PsA in Sweden was about 10% higher than in the general population, driven by excess comorbidity and with increased risks mainly in women and patients with longer disease duration.

Cost-effectiveness analysis of bimekizumab for the treatment of active psoriatic arthritis in Sweden.

AIMS: To evaluate the cost-effectiveness of bimekizumab, an inhibitor of IL-17F and IL-17A, against biologic and targeted synthetic disease-modifying antirheumatic drugs (DMARD) for psoriatic arthritis (PsA) from the Swedish healthcare system perspective. MATERIALS AND METHODS: A Markov model was developed to simulate the clinical pathway of biologic [b] DMARD-naïve or tumor necrosis factor inhibitor experienced [TNFi-exp] PsA patients over a lifetime horizon. Treatment response was incorporated as achievement of the American College of Rheumatology 50% (ACR50) and Psoriasis Area and Severity Index 75% (PASI75) response, and changes in the Health Assessment Questionnaire-Disability Index (HAQ-DI) score. The efficacy of bimekizumab was obtained from the BE OPTIMAL (bDMARD-naïve) and BE COMPLETE (TNFi-experienced) trials while a network meta-analysis (NMA) informed the efficacy of the comparators. Resource use and drug costs were obtained from published studies and databases of drug retail prices in Sweden. A willingness-to-pay threshold of €50,000 per quality-adjusted life year (QALY) was applied. RESULTS: In bDMARD-naïve patients, bimekizumab achieved greater QALYs (14.08) than with all comparators except infliximab (14.22), dominated guselkumab every 4 and 8 weeks, ixekizumab, secukinumab 300 mg, ustekinumab 45 mg and 90 mg, and was cost-effective against risankizumab, tofacitinib, upadacitinib and TNFis, except adalimumab biosimilar. In TNFi-experienced patients, bimekizumab led to greater QALYs (13.56) than all comparators except certolizumab pegol (13.84), and dominated ixekizumab and secukinumab 300 mg while being cost-effective against all other IL-17A-, IL-23- and JAK inhibitors. LIMITATIONS: An NMA informed the comparative effectiveness estimates. Given gaps in evidence of disease management and indirect costs specific to HAQ-DI scores, and sequential clinical trial evidence in PsA, non-PsA cost data from similar joint conditions were used, and one line of active treatment followed by best supportive care was assumed. CONCLUSIONS: Bimekizumab was cost-effective against most available treatments for PsA in Sweden, irrespective of prior TNFi exposure.

The National Prevalence of Clinically Diagnosed Psoriatic Arthritis in Sweden in 2017.

OBJECTIVE: Psoriatic arthritis (PsA) prevalence estimates vary across studies; studies based on national data are few. We aimed to estimate the prevalence of clinically diagnosed PsA in Sweden in 2017, overall and stratified by sex, age, education, and geography, and to quantify disease-modifying antirheumatic drug (DMARD) use among those in contact with specialized rheumatology care between 2015 and 2017. METHODS: Individuals who were 18 to 79 years of age, alive and residing in Sweden on December 31, 2017, and had a prior PsA diagnosis were identified from the National Patient Register (NPR) and/or the Swedish Rheumatology Quality Register (SRQ). PsA prevalence was estimated according to a base case (BC) definition (ie, ≥ 1 main PsA International Classification of Diseases code from rheumatology or internal medicine departments in the NPR or a PsA diagnosis in the SRQ), according to 4 sensitivity analysis definitions, and for those seen in specialized rheumatology care between 2015 and 2017. In the latter group, DMARD use during 2017 was also assessed. Data for stratifications were retrieved from national registers. RESULTS: The crude national prevalence of PsA for adults, aged 18 to 79 years, was estimated at 0.39%, according to the BC definition; 0.34% after accounting for diagnostic misclassification; and 0.32% to 0.50% across all sensitivity analyses. The prevalence was lower in males and in those with a higher level of education. The prevalence for those seen in specialized rheumatology care between 2015 and 2017 was estimated at 0.24%. During 2017, 32% of patients in this population received biologic or targeted synthetic DMARDs, and 41% received conventional synthetic DMARDs only. CONCLUSION: The prevalence of clinically diagnosed PsA in adults, aged 18 to 79 years, in Sweden in 2017 was around 0.35%. Among PsA cases in recent contact with specialized rheumatology care, almost three-fourths received DMARD therapy in 2017.

Long-Term Effect of Receiving a Family Strengths-Oriented Intervention on Family Cancer Caregiver Stress, Anxiety, and Depression Symptoms: A Longitudinal Quasi-Experimental Study.

The aim of this longitudinal study was to evaluate the long-term effects of providing a therapeutic conversation intervention, based on Family Systems Nursing, to family caregivers of a close relative with advanced cancer over the period before and during bereavement. To prevent adverse outcomes, caregivers need ongoing support that begins pre-loss and extends into the post-loss period. This study employed a one-group pre-test, post-test quasi-experimental design. Twenty-four caregivers participated in two intervention trials conducted over a 42-month period, receiving two intervention sessions pre-loss (Trial 1) and one intervention session post-loss (Trial 2). Significant decreases in anxiety and stress were noted over the three post-loss assessments. The final post-loss stress outcome was significantly lower than the first pre-loss score. For the depression score, there was not a significant change over time within the pre- or post-loss period. The findings provide evidence of decreasing anxiety and stress following the implementation of an extended family nursing intervention for bereaved family caregivers.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

The Impact of Receiving a Family-Oriented Therapeutic Conversation Intervention Before and During Bereavement Among Family Cancer Caregivers: A Nonrandomized Trial.

Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group.Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.

[Large health benefits can be achieved by better treatment of gout]. / Stora hälsovinster att uppnå med bättre behandling av gikt.

Urate lowering therapy (ULT) should, according to recent guidelines, be initiated in the majority of cases already after the first attack of gout. Allopurinol is the first line choice of ULT and should be started with low dose, which is increased until the treatment target is reached. The treatment target should be a blood urate of < 360 µmol/l or < 300 µmol/l (in the presence of topfi), which should be maintained until topfi have resolved. NSAID/cox-inhibitors, colchicine and glucocorticoids are all valid short-term treatments of gout attacks. ULT should not be paused/terminated during attacks and can be initiated during an attack that is adequately treated. Recent RCTs of ULT treatment have demonstrated the importance of thorough and adequate information to the patient and regular follow-up until treatment targets are reached. Such a strategy improve both compliance and outcomes of ULT treatment.

Occupational exposure to inorganic dust and risk of gout: a population-based study.

BACKGROUND: Risk factors operating independently of hyperuricemia could be of importance in determining why only a minority of people with hyperuricemia develop gout. Exposure to inorganic dust has been linked to other inflammatory diseases and could influence the development of gout. OBJECTIVES: To evaluate if occupational exposure to inorganic dust increases the risk of gout. METHODS: Individuals aged 30-65 years with a first gout diagnosis in 2006-2012 in the population-based healthcare database of the Western Swedish Healthcare Region (VEGA) and population controls matched by age and sex were included. Data on occupation was collected from the Swedish occupational register. Exposure status was assigned by means of a job exposure matrix. Data on gout-related comorbidities was collected from VEGA. Alcohol use disorder and obesity were related both to gout and exposure to inorganic dust and were adjusted for in multivariate analyses. ORs were calculated using conditional logistic regression. RESULTS: 5042 gout cases and 20 682 controls were included. Exposure to inorganic dust was associated with gout in both unadjusted (OR 1.12, 95% CI 1.04 to 1.20) and multivariate (OR 1.08, 95% CI 1.00 to 1.16) analyses of the whole population. In sex-stratified multivariate analyses, dust exposure was significantly associated with gout in women (adjusted OR 1.26, 95% CI 1.05 to 1.51), but not in men (adjusted OR 1.05, 95% CI 0.97 to 1.13). CONCLUSIONS: We describe for the first time an association between exposure to inorganic dust and gout. After adjusting for confounders, the findings were statistically significant for women but not for men.

Integrating nurse-facilitated advance care planning for patients newly diagnosed with advanced lung cancer.

BACKGROUND: Advance care planning (ACP) is well recognised as an important component of palliative care. However, there is still a need to explore ways in which it can become a part of routine practice, ensuring a timely and person-centred discussion. OBJECTIVES: To explore patients newly diagnosed with advanced lung cancer and their family members' experiences of engaging in a person-centred and structured ACP discussion facilitated by palliative care nurses in an outpatient oncology clinic at the University Hospital of Iceland. METHODS: An exploratory qualitative design employing semi-structured interviews and thematic analysis. The intervention included a structured ACP discussion, aided by a booklet. RESULTS: Key themes emerged describing families' and patients' experiences and highlighted that the timing and approach of the ACP discussion was appropriate and helpful, even though the discussion was sensitive and difficult. Using a routine approach with a flexible structure normalised the discussion and made it easier for the patients to take the lead in the discussion. CONCLUSIONS: ACP discussion can be part of an integrated palliative care and oncology service if implemented in a systematic way.

A multicenter study of attitudinal barriers to cancer pain management.

PURPOSE: The purpose of this study was to examine attitudinal barriers to cancer pain management and their relationship to pain, analgesic use, clinical, and demographic variables, as well as QOL, in a large sample of patients receiving strong opioids for pain in three European countries. METHODS: Participants in the present study were 555 patients with cancer, 18 years and older recruited from six centers in Germany, Iceland, and Norway. All had received strong opioids for at least 72 h. Data was collected with the Barriers Questionnaire-II, the Brief Pain Inventory, and the European Organization for Research and Treatment of Cancer QLQ-C30. RESULTS: The mean (SD) age of patients was 61.68 (12.35) years and 53% were men. Most common diagnoses were gastrointestinal, lung, prostate, and breast cancer. The mean (SD) time from diagnosis was 32.24 (44.55) and 4.97 (9.64) months from start of opioid therapy. Mean (SD) pain severity was 3.19 (1.93) on a 0 to 10 scale, and 46.5% reported worst pain of 7 or higher. Attitudinal barriers had a mean (SD) of 1.95 (0.82) on a 0-5 scale, with fear of addiction as the strongest barrier across countries 2.85 (1.49). Barrier scores increased with age, and were higher among men than women. Higher barrier scores were associated with higher pain severity and interference, and lower performance status, but not with global health-QOL. Patients who had been on opioids for a shorter time reported higher barriers. CONCLUSIONS: Attitudinal barriers are frequent in cancer pain patients on opioids and are associated with less effective pain control.

[Frequency of symptoms and drug treatment among dying patients in the last 24 hours of life at Landspitali - The National University Hospital of Iceland and in nursing homes].

INTRODUCTION: The purpose of this study was to evaluate the frequency of 5 common symptoms and drug treatments prescribed and given in the last 24 hours of life in 11 medical units at Landspitali National University Hospital of Iceland (LUH) and in 7 nursing homes (NH). MATERIAL AND METHODS: Data was collected retrospectively from 232 charts of patients who died in 2012, using documentation in the Liverpool Care Pathway (LCP) and the medication management system. RESULTS: About half of the patients died at LUH with similar gender ratio but 70% of patients in NH were women. The LCP was used for 50% of all deaths at LUH and 58% in NH. In 45% of all deaths LCP was used for 24 hours or less. The most common symptoms were pain (51%), agitation (36%) and respiratory tract secretions (36%). Frequency of symptoms was similar between institutions and age groups. Cancer patients had significantly higher incidence of agitation and were prescribed and given higher doses of morphine compared to other groups. Regular medication for agitation was haloperidol (45%), diazepam (40%) and midazolam (5%). Close to 70% of the patients were treated with a scopolamin patch for death rattle. CONCLUSION: A large number of patients have symptoms in the last 24 hours of life both in hospital and in nursing homes. Symptom control can be improved by adjusting morphine doses to patients need, using regular doses of benzodiazepine for agitation and better use of anticholinergic medication for death rattle. Key words: symptoms, medication, dying patients, last 24 hours of life, hospital, nursing homes. Correspondence: Svandis Iris Halfdanardottir, svaniris@landspitali.is.

Symptoms and functional status of palliative care patients in Iceland.

BACKGROUND: Palliative care patients experience many debilitating symptoms and functional loss, but few longitudinal studies on the subject are available. AIMS: To assess the symptoms and functional status of patients admitted to specialised palliative care, to investigate whether changes occur over the admission period, and to establish whether symptoms and physical and cognitive function differ, based on the service setting. In addition, to participate in the development of the interRAI Palliative Care instrument (interRAI PC). METHODS: A prospective longitudinal study (N=123) was conducted at three time points: at admission to specialised palliative care, 14 days post-admission, and at discharge or death. The interRAI PC version 8 was used for data collection. Descriptive statistics were used, together with the Friedman statistical test and Wilcoxon post-hoc test. RESULTS: Patients experienced a wide spectrum of symptoms; the most frequent were fatigue, loss of appetite, pain, difficulty sleeping, insufficient nutritional intake and nausea. Some symptoms stayed relatively stable over time, but others increased, while physical and cognitive function decreased over time. The interRAI PC version 8 proved comprehensive and simple to use. CONCLUSIONS: Patients experienced a significant symptom burden and functional loss from admission to discharge or death. Symptoms indicating progressive deterioration became more frequent and severe, while physical and cognitive function decreased at all levels. Overall, inpatients had more symptoms and functional decline than home-care patients. The interRAI PC version 8 proved valuable in collecting clinical information and detecting changes over time as other interRAI suite instruments.

In the shadow of death: existential and spiritual concerns among persons receiving palliative care.

This study explores existential and spiritual concerns from the perspective of people receiving palliative care. It examines the meaning of these concerns, their influence on people's lives and investigates the connections between them. In-depth qualitative interviews were conducted with ten persons. Findings reveal existential and spiritual aspects as interconnected and an integral part of the participants' everyday existence. It concludes with a call for a better understanding of these phenomena in the palliative care context.

"To cherish each day as it comes": a qualitative study of spirituality among persons receiving palliative care.

PURPOSE: Spirituality is one of the main aspects of palliative care. The concept is multidimensional and encompasses the existential realm as well as value-based and religious considerations. The aim of this study was to explore spirituality from the perspective of persons receiving palliative care and examine their experience of spirituality and its influence on their lives and well-being. METHODS: Qualitative interviews were conducted with ten persons receiving palliative care from Palliative Care Services in Iceland. The interviews were tape-recorded, transcribed and analysed. The study is in the field of practical theology and used the theoretical approach of hermeneutical phenomenology. RESULTS: Thematic analysis found that the spiritual dimension was of significance for the participants who understood it as a vital element connected to seeking meaning, purpose and transcendence in life. Religious and non-religious aspects of spirituality were expressed including strong spiritual components of family relationships, the meaning of God/a higher being and spiritual practices which served as a key factor in giving strength, activating inner resources and motivating hope. Nine of the participants expressed their spirituality as faith. CONCLUSIONS: Spirituality was experienced broadly as an important dimension of how participants lived with terminal illness. Religious and non-religious characteristics were recognised which reveals the complex nature of the phenomenon. Faith was a significant part of the participants' spirituality indicating the importance of attending to this aspect of palliative care. The study suggests the potential contributions of theological approaches which are relevant for palliative care research and practice.

Pain and other symptoms and their relationship to quality of life in cancer patients on opioids.

PURPOSE: The purpose of this study was to assess pain, other symptoms and QOL, and the relationship between these variables, among cancer patients on strong opioids. METHODS: The study was cross-sectional, descriptive, and correlational. A convenience sample of 150 cancer patients, ≥18 years, all on strong opioids for ≥ 3 days was recruited. RESULTS: The mean (SD) age was 64.7 (12.7) years, and 59 % were women. Mean (SD) time from cancer diagnosis was 36.3 (55.1) months. The median number of symptoms was 9, range 1-16 and the mean (SD) severity was 1.9 (0.5) on a 1-4 scale. Pain was one of the most prevalent (90 %) and severe symptoms with a mean (SD) of 2.56 (0.9). Number of symptoms explained 25.8 % of the variance in QOL, adjusted for age and sex. Another model, also adjusted for age and sex, showed that pain, fatigue, insomnia and depression, explained 33.6 % of the variance in QOL. CONCLUSIONS: The symptomatology in this study was similar to studies on patients with advanced cancer. QOL was associated with the number of symptoms patients experience and individual symptoms, notably fatigue and pain. Despite the use of strong opioids, pain was both common and severe, suggesting under-treatment. Pain and other symptoms need to be assessed and managed in order to improve patients' QOL. Special attention needs to be paid to multisymptom management in patients on opioids.