Browsing by Subject "Symptoms"

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  • Rajala, Kaisa; Lehto, Juho T.; Saarinen, M.; Sutinen, E.; Saarto, T.; Myllarniemi, M. (2016)
    Background: Idiopathic pulmonary fibrosis (IPF) is a progressive disease with median survival from 2 to 7 years. Palliative care is an important part of patients' care as lung transplantation is not an option for the majority of patients. The aim of this study was to describe treatment practices, decision-making and symptoms during end-of-life care of IPF patients. Methods: We identified 59 deceased patients from a national prospective IPF cohort study (FinnishIPF) and analyzed retrospectively their health care documentation during the 6 months that preceded death. Results: Hospital was the place of death for 47 patients (80 %). A majority of the patients (93 %) were hospitalized for a mean of 30 days (range 1-96 days) during the last 6 months of their life. Altogether, patients spent 15 % of their last 6 months of life in a hospital. End-of-life decisions and do not resuscitate (DNR) orders were made for 19 (32 %) and 34 (57 %) of the patients, respectively, and 22 (42 %) of these decisions were made Conclusions: The majority of IPF patients died in a hospital with ongoing life-prolonging procedures until death. The frequent use of opioids is an indicator of an intention to relieve symptoms, but end-of-life decisions were still made very late. Early integrated palliative care with advance care plan could improve the end-of-life care of dying IPF patients.
  • Rajala, Kaisa; Lehto, Juho T; Saarinen, M.; Sutinen, E.; Saarto, T.; Myllärniemi, M. (BioMed Central, 2016)
    Abstract Background Idiopathic pulmonary fibrosis (IPF) is a progressive disease with median survival from 2 to 7 years. Palliative care is an important part of patients´ care as lung transplantation is not an option for the majority of patients. The aim of this study was to describe treatment practices, decision-making and symptoms during end-of-life care of IPF patients. Methods We identified 59 deceased patients from a national prospective IPF cohort study (FinnishIPF) and analyzed retrospectively their health care documentation during the 6 months that preceded death. Results Hospital was the place of death for 47 patients (80 %). A majority of the patients (93 %) were hospitalized for a mean of 30 days (range 1–96 days) during the last 6 months of their life. Altogether, patients spent 15 % of their last 6 months of life in a hospital. End-of-life decisions and do not resuscitate (DNR) orders were made for 19 (32 %) and 34 (57 %) of the patients, respectively, and 22 (42 %) of these decisions were made ≤ 3 days prior to death. During the final hospital stay, antibiotics were given to 79 % and non-invasive ventilation to 36 % of patients. During the last 24 h of life, radiologic imaging or laboratory tests were taken in 19 % and 53 % of the hospitalized patients, respectively. These tests and life prolonging therapies were more common in tertiary hospitals compared to other places of death. Dyspnea (66 %) and pain (31 %) were the most common symptoms recorded. Opioids were prescribed to 71 % of the patients during the last week before death. Conclusions The majority of IPF patients died in a hospital with ongoing life-prolonging procedures until death. The frequent use of opioids is an indicator of an intention to relieve symptoms, but end-of-life decisions were still made very late. Early integrated palliative care with advance care plan could improve the end-of-life care of dying IPF patients.
  • Pekkanen, Juha; Karjalainen, Jussi; Lampi, Jussi (2020)
    Due to the significant methodological problems in the empirical part of the paper and the very selective literature review, the conclusions of the paper are mostly unsupported.
  • Rajala, K.; Lehto, J. T; Sutinen, E.; Kautiainen, H.; Myllärniemi, M.; Saarto, T. (BioMed Central, 2018)
    Abstract Background Idiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients’ health-related quality of life (HRQOL). We aimed to evaluate IPF patients’ symptoms and HRQOL in a well-documented clinical cohort during their last two years of life. Methods In April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years. Results Ninety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p < 0.001). The proportion of patients with MMRC scores ≥3 increased near death. Breathlessness and fatigue were the most severe symptoms. Symptom severity for the following symptoms increased significantly and reached the highest mean scores during the last six months of life (numeric rating scale/standard deviation): breathlessness (7.1/2.8), tiredness (7.0/2.3), dry mouth (6.0/3.0), cough (5.8/2.9), and pain with movement (5.0/3.5). Conclusions To our knowledge this is the first study demonstrating, that IPF patients experience remarkably low HRQOL already two years before death, especially regarding physical role. In addition, they suffer from severe breathlessness and fatigue. Furthermore, physical, social and emotional wellbeing deteriorate, and symptom burden increases near death. Regular symptom and HRQOL measurements are essential to assess palliative care needs in patients with IPF.
  • Rajala, K.; Lehto, J. T.; Sutinen, E.; Kautiainen, H.; Myllärniemi, M.; Saarto, T. (2018)
    BackgroundIdiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients' health-related quality of life (HRQOL). We aimed to evaluate IPF patients' symptoms and HRQOL in a well-documented clinical cohort during their last two years of life.MethodsIn April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years.ResultsNinety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p
  • Hakulinen, Christian; Fried, Eiko; Pulkki-Råback, Laura; Virtanen, Marianna; Suvisaari, Jaana; Elovainio, Marko (2020)
    Purpose Putative causal relations among depressive symptoms in forms of network structures have been of recent interest, with prior studies suggesting that high connectivity of the symptom network may drive the disease process. We examined in detail the network structure of depressive symptoms among participants with and without depressive disorders (DD; consisting of major depressive disorder (MDD) and dysthymia) at two time points. Methods Participants were from the nationally representative Health 2000 and Health 2011 surveys. In 2000 and 2011, there were 5998 healthy participants (DD-) and 595 participants with DD diagnosis (DD+). Depressive symptoms were measured using the 13-item version of the Beck Depression Inventory (BDI). Fused Graphical Lasso was used to estimate network structures, and mixed graphical models were used to assess network connectivity and symptom centrality. Network community structure was examined using the walktrap-algorithm and minimum spanning trees (MST). Symptom centrality was evaluated with expected influence and participation coefficients. Results Overall connectivity did not differ between networks from participants with and without DD, but more simple community structure was observed among those with DD compared to those without DD. Exploratory analyses revealed small differences between the samples in the order of one centrality estimate participation coefficient. Conclusions Community structure, but not overall connectivity of the symptom network, may be different for people with DD compared to people without DD. This difference may be of importance when estimating the overall connectivity differences between groups with and without mental disorders.
  • Virtanen, Suvi (Helsingfors universitet, 2016)
    Depression is a psychiatric disorder composed of several clusters of symptoms, which do not necessarily reflect common pathways of pathophysiological processes. Thus, a new conceptualization of depression has been proposed, which suggests that depression should be dissected to its key components instead of treating it as one homogeneous concept. Personality trait neuroticism is a risk factor that is consistently linked with depression. Several models have been suggested for the association between neuroticism and depression. One of them is a so-called common cause -model, which assumes that a shared etiology explains the co-occurrence of the two. Research from twin studies supports this notion, as neuroticism and depression have been found to share a large proportion of their genetic basis. However, earlier research has examined depression as a composite concept, and there are no studies to date which would have examined the shared genetic basis of specific symptoms of depression in relation with neuroticism. This study tests the common cause -model by estimating, whether the same genetic and environmental components are relevant in explaining the covariation between neuroticism and specific symptoms of depression. The data used in this study was from the Swedish Adoption/Twin Study (n = 1515, av. age = 62.0). Depression was measured with The Center for Epidemiological Studies - Depression Scale (CES-D), and separate analyses were conducted for three factors: somatic complaints, (lack of) positive affect and depressed affect. The results showed that all of the depressive symptoms shared the same genetic and environmental components when modeling the association with neuroticism, which supports the common cause -model. Over a half of the phenotypic correlation was explained by genetic influences between neuroticism and somatic complaints, as well as neuroticism and positive affect. Half of the co-variation between neuroticism and depressed affect was due to genetic influences. Findings of the current study suggest, that genetic and individual specific environmental influences are important in explaining the relationship in all of the symptoms. For future endeavors, it is suggested to search for concrete risk factors and neurobiological endophenotypes that are shared between specific symptoms and neuroticism. While the use of composite concept of depression was supported in this study, the research question has not been yet examined in molecular genetic studies. A twin model can only differentiate sources of variation, not concrete risk factors. Thus, the results presented here only apply in the context of twin modeling. Also, the robustness of the results should be tested by replicating the results among younger samples.
  • Laatikainen, Reijo; Jalanka, Jonna; Loponen, Jussi; Hongisto, Sanna-Maria; Hillilä, Markku; Koskenpato, Jari; Korpela, Riitta; Salonen, Anne (BioMed Central, 2019)
    Abstract Background A low intake of Fermentable, Oligo-, Di-, Mono-saccharides and Polyols (FODMAPs) is effective in the symptom control of irritable bowel syndrome (IBS) patients but may exert negative effects on the intestinal microbiota. The microbial effects of increasing regular or non-FODMAP fibre sources are largely unknown. Furthermore, it is not known if the baseline microbiota composition is associated with individual symptom control during the consumption of different rye products in IBS patients. Our objective was to evaluate whether increased consumption of low-FODMAP rye bread or regular rye bread for 4 weeks would alter the intestinal microbiota composition of IBS patients following their habitual diet, and whether these changes associate to symptoms and/or the baseline microbiota. Methods The study was conducted as a randomized double blind controlled cross-over study (n = 50). Microbiota was analysed by 16S rRNA gene sequencing and associated with gastrointestinal symptoms. Both microbial changes and their associations to symptoms were secondary outcomes. Results The consumption of the test breads did not alter microbiota diversity. Compared to baseline, consumption of the low FODMAP rye bread decreased the abundance of Bacteroides, Flavonifractor, Holdemania, Parasutterella and Klebsiella and showed a trend towards increased bifidobacteria, whereas the regular rye bread decreased the abundance of Flavonifractor. When comparing between the two test breads, Klebsiella was decreased after low-FODMAP rye bread intake. Patients whose symptoms decreased during the low-FODMAP rye bread displayed more Blautia and less Barnesiella at baseline. Conclusions Consumption of low-FODMAP rye bread had modest, potentially beneficial effects on patients’ microbiota while increasing their intake of fibre substantially. The baseline microbiota composition was associated with the variable degrees of symptom relief experienced by the patients. Consumption of a low-FODMAP rye bread might be one way to increase dietary fibre intake and improve the mild dysbiosis often observed among patients with IBS. Trial registration ClinicalTrials.gov: NCT02161120 . Retrospectively registered 11 June 2014.
  • Sell, Ville; Ettala, Otto; Perez, Ileana Montoya; Järvinen, Riikka; Pekkarinen, Tarmo; Vaarala, Markku; Seppänen, Marjo; Liukkonen, Tapani; Marttila, Timo; Aaltomaa, Sirpa; Kaasinen, Eero; Boström, Peter J. (2020)
    Purpose To investigate the symptoms and delays in the clinical pathway of bladder cancer (BC). Methods This is a substudy of a prospective, randomized, multicenter phase III study (FinnBladder 9, NCT01675219) where the efficacy of photodynamic diagnosis and 6 weekly optimized mitomycin C instillations are studied in pTa bladder cancer with high risk for recurrence. The data of presenting symptoms and critical time points were prospectively collected, and the effect of factors on delays was analyzed. Results At the time of analysis, 245 patients were randomized. Analysis included 131 patients with primary bladder cancer and their complete data. Sixty-nine percent had smoking history and 67% presented with macroscopic hematuria. Median patient delay (from symptoms to health-care contact) was 7 days. The median general practice delay (from health-care contact to urology referral) was 8 days. Median time from urology referral to cystoscopy was 23 days and from cystoscopy to TUR-BT 21 days. Total time used in the clinical pathway (from symptom to TUR-BT) was 78 days. Current and former smokers had non-significantly shorter patient-related and general practice delays compared to never smokers. TUR-BT delay was significantly shorter in patients with malignant cytology (16 days) compared to patients with benign cytology (21 days, p = 0.03). Conclusions Patient-derived delay was short and most of the delay occurred in the referral centers. The majority had macroscopic hematuria as the initial symptom. Surprisingly, current and past smokers were more prone to contact the health-care system compared to never smokers.
  • Lampi, Jussi; Ung-Lanki, Sari; Santalahti, Päivi; Pekkanen, Juha (2018)
    Background: Questionnaires can be used to assess perceived indoor air quality and symptoms in schools. Questionnaires for primary school aged children have traditionally been parent-administered, but self-administered questionnaires would be easier to administer and may yield as good, if not better, information. Our aim was to compare the repeatability of self- and parent-administered indoor air questionnaires designed for primary school aged pupils. Methods: Indoor air questionnaire with questions on child's symptoms and perceived indoor air quality in schools was sent to parents of pupils aged 7-12 years in two schools and again after two weeks. Slightly modified version of the questionnaire was administered to pupils aged 9-12 years in another two schools and repeated after a week. 351 (52%) parents and 319 pupils (86%) answered both the first and the second questionnaire. Test-retest repeatability was assessed with intra-class correlation (ICC) and Cohen's kappa coefficients (k). Results: Test-retest repeatability was generally between 0.4-0.7 (ICC; k) in both self-and parent-administered questionnaire. In majority of the questions on symptoms and perceived indoor air quality test-retest repeatability was at the same level or slightly better in self-administered compared to parent-administered questionnaire. Agreement of self-and parent administered questionnaires was generally <0.4 (ICC; k) in reported symptoms and 0.4-0.6 (ICC; k) in perceived indoor air quality. Conclusions: Children aged 9-12 years can give as, or even more, repeatable information about their respiratory symptoms and perceived indoor air quality than their parents. Therefore, it may be possible to use self-administered questionnaires in future studies also with children.
  • Lampi, Jussi; Ung-Lanki, Sari; Santalahti, Päivi; Pekkanen, Juha (BioMed Central, 2018)
    Abstract Background Questionnaires can be used to assess perceived indoor air quality and symptoms in schools. Questionnaires for primary school aged children have traditionally been parent-administered, but self-administered questionnaires would be easier to administer and may yield as good, if not better, information. Our aim was to compare the repeatability of self- and parent-administered indoor air questionnaires designed for primary school aged pupils. Methods Indoor air questionnaire with questions on child’s symptoms and perceived indoor air quality in schools was sent to parents of pupils aged 7–12 years in two schools and again after two weeks. Slightly modified version of the questionnaire was administered to pupils aged 9–12 years in another two schools and repeated after a week. 351 (52%) parents and 319 pupils (86%) answered both the first and the second questionnaire. Test-retest repeatability was assessed with intra-class correlation (ICC) and Cohen’s kappa coefficients (k). Results Test-retest repeatability was generally between 0.4–0.7 (ICC; k) in both self- and parent-administered questionnaire. In majority of the questions on symptoms and perceived indoor air quality test-retest repeatability was at the same level or slightly better in self-administered compared to parent-administered questionnaire. Agreement of self- and parent administered questionnaires was generally < 0.4 (ICC; k) in reported symptoms and 0.4–0.6 (ICC; k) in perceived indoor air quality. Conclusions Children aged 9–12 years can give as, or even more, repeatable information about their respiratory symptoms and perceived indoor air quality than their parents. Therefore, it may be possible to use self-administered questionnaires in future studies also with children.