Patients with heart failure (HF) must monitor and recognize escalating symptoms to manage worsening HF in a timely manner. However, routine symptom monitoring is not commonly performed by this population. Providing a symptom diary along with an education and counseling session may help HF patients promote symptom monitoring and interpretation. The accumulated information about changes in daily symptoms will allow patients to easily compare current symptom status to the past without depending on memory and can rapidly capture worsening HF. To date, few studies have tested the effect of a daily symptom diary. The purpose of this dissertation was to develop and test a symptom diary intervention to improve outcomes in HF patients. Prior to testing the intervention, preliminary work included: (1) determining the impact of symptom clusters on cardiac event-free survival; (2) evaluating the quality of existing symptom measures designed for HF patients; (3) evaluating the effect of physical symptom items that were often included in a depressive symptom instrument on cardiac event-free survival; and (4) evaluating the association between symptom monitoring and self-care management. Based on this information, a randomized, controlled pilot study was conducted to test the effect of a symptom diary with an education and counseling intervention on prognosis, healthrelated quality of life (HRQOL), and self-care maintenance at 3 months follow-up. A total of 44 hospitalized patients with HF were randomly assigned to either usual care or intervention providing a daily symptom diary with education and counseling. There were trends toward fewer HF events and improved self-care maintenance in the intervention group compared to the usual care group. However, there was no difference in HRQOL between the two groups. The results of this dissertation suggest the importance of assessing symptom clusters and further studies to improve the quality of existing HF symptom measures. Results from this dissertation also provided the evidence of the advantages of regular symptom monitoring to facilitate early identification of worsening HF and initiation of timely responses. However, further studies are needed to provide additional evidence of the positive impact of a use of daily symptom diary in patients with HF.

no / Context. There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other possible sources of discomfort, or even if items differ. Objectives. To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life. Methods. Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life; Discomfort ScaleeDementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in DementiaeComfort Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated median proportions to compare distributions of categories of pain and discomfort tools. Results. We found that, despite variable content across tools, items from pain and discomfort tools overlapped considerably. For example, positive elements such as smiling and spiritual items were more often included in discomfort tools but were not unique to these. Pain tools comprised more ‘‘mostly descriptive’’ (median 0.63 vs. 0.44) and fewer ‘‘highly subjective’’ items (0.06 vs. 0.18); some used time inconsistently, mixing present and past observations. Conclusion. This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and discriminating pain from other sources of discomfort.

No description available.

Information technologies are making their way into health care. While they have been primarily in the domain of the health care providers, applications are being created for use by patients. This qualitative study looks at the usability of an electronic tool with a broader view of patient-as-user; the research question asks how this tool stands up to an assessment of the tool’s usability. Usability seeks to find out how easy a system is to use, whether the system is acceptable, and whether the system is enjoyable to use. Qualitative description techniques were employed for a broader perspective on the usability results. Key findings indicate that patients need to be in control of the process of using self-reporting tools; patients want to be able to use these applications at home; computer technologies do not replace the need for human contact in the health care setting; self-reporting assessment tools can give a voice to patients who are otherwise silent; privacy concerns must be handled. Few studies have attempted to look at patients as they use electronic applications, but if we want patients to use them, tools need to be designed with the patient-as-user in mind, considering diverse levels of functioning among patients.

Neuropathic pain in a common problem encountered in palliative care. When neuropathic pain is diagnosed, appropriate treatment is important in limiting the severe psychosocial impairment that can ensue with undertreated pain. Proper evaluation of the patient to clarify the type of pain experienced is the first step to determine appropriate management. Tapentadol is an oral mu-opioid receptor agonist and a noradrenaline reuptake inhibitor developed by Ortho-McNeil Janssen Pharmaceuticals and approved by the Food and Drug Administration in November 2008 for the treatment of moderate-to-severe acute pain in adult patients and for chronic pain in August 2011 in an extended release form. Tapentadol has been studied for use in nociceptive pain but few studies have yet been done to assess its efficacy in the treatment of neuropathic pain.

Hjärtsvikt är en vanligt förekommande sjukdom med ökad prevalens. Viktiga delar i behandlingen av hjärtsvikt är egenvård och följsamhet till behandling vilket innefattar att tolka och agera korrekt utifrån symtom och tecken till hjärtsvikt. Genom att tidigt upptäcka symtom på hjärtsvikt kan adekvata åtgärder sättas in som förhindrar en ytterligare försämring.  Syftet var att belysa hur personer med hjärtsvikt tolkar och agerar vid symtom och tecken på hjärtsvikt.  Metoden som användes var en litteraturöversikt med systematisk sökstrategi. De inklusionskriterier som användes var att artiklarna skulle handla om personer som var över 18 år med diagnosen hjärtsvikt. Artiklarna var av kvalitativ, kvantitativ och mixad metod och uppfyllde kriterierna för god eller mycket god kvalité enligt kvalitetsgranskningen. Artiklarna sammanställdes i en integrerad analys.  Resultatet som framkom består av två kategorier och sex underkategorier. Den första kategorin är “Tolkning av symtom” med underkategorierna “Symtom och hur de upplevs”, “Förståelse av symtom” och “Patientens bedömning av symtom”. Den andra kategorin som framkom var “Agerande på symtom” med underkategorierna “Strategier innan vårdsökande” och “Sökande av vård”. Resultatet lyfter olika aspekter som påverkar hur personer med hjärtsvikt tolkar och agerar vid symtom och tecken på hjärtsvikt.  Slutsatsen är att tolkning av och agerande vid symptom och tecken på hjärtsvikt är individuellt och verkar bero på kunskapsnivå, psykiska faktorer, anhörigas delaktighet, tidigare erfarenheter och relationen med vården. / Heart failure is a common disease with increased prevalence. Essential parts in the treatment of heart failure are self-care and compliance, which includes interpreting and acting correctly when experiencing signs and symptoms of heart failure. By detecting symptoms of the heart failure early, adequate measures can be put in place to prevent a further deterioration.  The aim was to highlight how people with heart failure interpret and act up on symptoms and signs of heart failure.  The method used was a literature review with a systematic search strategy. The inclusion criteria used were that the articles should be about people over 18 with a diagnosis of heart failure. The articles were of qualitative, quantitative and mixed methods and met the criteria for good or very good quality according to quality. The articles were compiled in an integrated analysis.  The result that emerged consists of two categories and six subcategories. The first category is “Interpretation of symptoms” with subcategories “Symptoms and how they are experienced”, “Understanding of symptoms” and “Patient's assessment of symptoms”. The second category that emerged is "Acting on symptoms" with subcategories "Strategies before seeking care" and "Seeking care". The result highlights different aspects that influence how people with heart failure interpret and act upon symptoms and signs of heart failure.  The conclusion is that the interpretation of and action in symptoms and signs of heart failure is individual and seems to depend on the level of knowledge, psychological factors, the participation of relatives, previous experiences and the relationship with the care.

Bakgrund Vid palliativ vård är ett av de grundläggande målen att identifiera och lindra smärta och andra besvärande symtom. Studier har visat att patient och vårdpersonal skattar patientens symtom olika, vilket visar på vikten av att genom systematisk symtomskattning få kännedom om patientens symtom. Patienter i palliativ vård har ofta komplexa symtom som påverkar varandra sinsemellan, och är samtidigt påverkade av sin sjukdom så att möjligheten att själv skatta symtomen försämras. Ett antal olika symtomskattningsinstrument (SSI) kan användas vid palliativ vård, och symtomskattning är en av de kompetenser som ingår i sjuksköterskans ansvarsområde. Dock visar resultat från Svenska Palliativregistret att de målnivåer för symtomskattning som Socialstyrelsen rekommenderar är långt ifrån att uppfyllas. En förutsättning för att kunna öka frekvensen av symtomskattning och därmed även vårdkvaliteten, är att få en större förståelse för vilka faktorer som bidrar till detta, genom att studera sjuksköterskors perspektiv på att använda SSI vid palliativ vård. Syftet var att beskriva sjuksköterskors perspektiv på att använda SSI vid allmän och specialiserad palliativ vård. Metod för studien var kvalitativa semistrukturerade fokusgruppsintervjuer med sjuksköterskor från hospice, avancerad sjukvård i hemmet (ASIH) och allmän hemsjukvård. Alla tre intervjuerna hade fyra deltagare och varade mellan 55 - 57 minuter. Intervjuerna spelades in och transkriberades. Data analyserades med kvalitativ innehållsanalys. Resultatet består av fyra kategorier: 1. SSI innebär en kvalitetssäkring, 2. Sjuksköterskans arbetssätt med SSI är viktigt för resultatet, 3. Hinder och begränsningar i användningen av SSI, och 4. Organisationens betydelse i arbetet med SSI. Slutsats Resultatet visar att sjuksköterskorna upplevde att användandet av SSI kan innebära en kvalitetssäkring av vården, men är inget heltäckande verktyg som kan användas i alla situationer och kan inte ersätta klinisk erfarenhet. Sjuksköterskans kunskap om SSI är avgörande för utförandet, varför utbildning i SSI för sjuksköterskor inom palliativ vård, men även för övriga professioner i teamet kring patienten, är av stor vikt. Organisationen spelar en viktig roll i att se till att rutiner och etablerade arbetssätt finns. Fortsatt forskning bör därför vidare undersöka vilka kunskaper sjuksköterskor anser sig behöva för att kunna använda SSI på ett effektivt sätt.

Bakgrund: Många äldre personer med kognitiv svikt och palliativt vårdbehov lever antingen hemma eller vårdas på vård-och omsorgsboenden. För att få en heltäckande förståelse av patientens symptom, kan sjuksköterskan använda sig av olika bedömningsinstrument. Det finns flera olika bedömningsinstrument tillgängliga för att bedöma symtom, både för generella och specifika symtom inom palliativ vård. Dessvärre är många av dessa verktyg inte lämpade för användning vid bedömningar av personer med minskad kognitiv förmåga. Syfte: Studiens syfte är att belysa sjuksköterskors erfarenhet av symtomskattning i kombination med bedömningsinstrument vid palliativ vård av personer med kognitiv sjukdom inom den kommunala hemsjukvården. Metod: En kvalitativ metod med induktiv ansats användes. Insamlingen av data gjordes med kvalitativa enkäter med öppna frågor. Resultat: Resultatet presenteras i två övergripande kategorier: Symtombedömning och Möjligheter och utmaningar vid symtombedömning. Resultatet visar att symtombedömning med hjälp av skattningsinstrument genomförs i olika utsträckningar samt att samverka i team med patient, anhöriga samt andra professioner ses som en nödvändighet för att säkerställa en högkvalitativ och säker palliativ vård för personer med kognitiv sjukdom. Konklusion: Symtomskattning ska inte bara beaktas som en standardiserad process, utan snarare som en komplex och individuell bedömningsuppgift som kräver olika strategier baserat på patientens behov och situation. / Background: Many older adults with cognitive impairment and palliative care needs either live at home or are cared for in nursing homes. In order to obtain a comprehensive understanding of the older adults symptoms, nurses can utilize various assessment tools. Several symptom assessment tools are available to evaluate symptoms, both general and specific, within palliative care. Unfortunately, many of these tools are not suitable for use with individuals with reduced cognitive abilities. Aim: The purpose of the study is to illuminate nurses' experiences of symptom assessment in combination with assessment tools in palliative care for individuals with cognitive disorders within municipal home healthcare. Method: A qualitative method with an inductive approach was employed. Data collection was conducted through qualitative surveys with open-ended questions. Findings: The results are presented in two overarching categories: Symptom Assessment and Opportunities and Challenges in Symptom Assessment. The findings indicate that symptom assessment using assessment instruments varies, and collaboration in a team with the patient, family, and other professionals is considered essential to ensure high-quality and safe palliative care for individuals with cognitive disease. Conclusion: Symptom assessment should not be regarded merely as a standardized process but rather as a complex and individualized evaluation task that requires various strategies based on the patient's needs and situation.

Objective: The aim of this study was to develop, evaluate, and standardize a short form of the well-established Eating Disorder Examination-Questionnaire (EDE-Q). The newly developed EDE-Q8 was required to reflect the originally postulated structure of the EDE-Q. Method: Data were drawn from two nationwide representative population surveys in Germany: a survey conducted to develop the EDE-Q8 in 2009 (N = 2520); and a survey conducted in 2013 (N = 2508) for the evaluation and calculation of EDE-Q8 percentiles. Results: The EDE-Q8 had excellent item characteristics, very good reliability and a very good model fit for the postulated second-order factorial structure. Furthermore, a strong correlation between the EDE-Q8 and a 13 item short form of the Eating Attitudes Test was observed. Discussion: The EDE-Q8 appears to be particularly suitable in epidemiological research, when an economical assessment of global eating disorder psychopathology is required.

This thesis in the field of microdata analysis aims to introduce dose optimizing algorithms for the pharmacological management of Parkinson’s disease (PD). PD is a neurodegenerative disease that mostly affects the motor functions of the patients and it is characterized as a movement disorder. The core symptoms of PD are: bradykinesia, postural instability, rigidity, and tremor. There is no cure for PD and the use of levodopa to manage the core symptoms is considered the gold standard. However, long term use of levodopa causes reduced medication efficacy, and side effects, such as dyskinesia, which can also be attributed to overmedication. When that happens precise individualized dosing schedules are required. The goal of this thesis is to examine if algorithmic methods can be used to find dosing schedules that treat PD symptoms and minimize manifestation of side effects. Data from three different sources were used for that purpose: data from a clinical study in Uppsala University hospital in 2015, patient admission chart data from Uppsala University hospital during 2011-2015, and data from a clinical study in Gothenburg University during 2016-2017. The data were used to develop the methods and evaluate the performance of the proposed algorithms.The first algorithm that was developed was a sensor-based method that derives objective measurements (ratings) of PD motor states. The construction of the sensor index was based on subjective ratings of patients’ motor functions made by three movement disorder experts. This sensor-based method was used when deriving algorithmic dosing schedules. Afterwards, a method that uses medication information and ratings of the patients’ motor states to fit individual patient models was developed. This method uses mathematical optimization to individualize specific parameters of dose-effects models for levodopa intake, through minimizing the distance between motor state ratings and dose-effect curves. Finally, two different dose optimization algorithms were developed and evaluated, that had as input the individual patient models. The first algorithm was specific to continuous infusion of levodopa treatment, where the patient’s state was set to a specific target value and the algorithm made dosing adjustments to keep that patients motor functions on that state. The second algorithm concerned oral administration of microtables of levodopa. The ambition with this algorithm was that the suggested doses would find the right balance between treating the core symptoms of PD and, at the same time, minimizing the side effects of long term levodopa use, mainly dyskinesia. Motor state ratings for this study were obtained through the sensor index. Both algorithms followed a principle of deriving a morning dose and a maintenance dose for the patients, with maintenance dose being an infusion rate for the first algorithm, and oral administration doses at specific time points for the second algorithm.The results showed that the sensor-based index had good test-retest reliability, sensitivity to levodopa treatment, and ability to make predictions in unseen parts of the dataset. The dosing algorithm for continuous infusion of levodopa had a good ability to suggest an optimal infusion rating for the patients, but consistently suggested lower morning dose than what the treating personnel prescribed. The dosing algorithm for oral administration of levodopa showed great agreement with the treating personnel’s prescriptions, both in terms of morning and maintenance dose. Moreover, when evaluating the oral medication algorithm, it was clear that the sensor index ratings could be used for building patient specific models.