Bakgrund: Kronisk obstruktiv lungsjukdom (KOL) är en av de vanligaste dödsorsakerna i världen. KOL är en kronisk sjukdom som är icke reversibel och orsakas främst av tobaksrökning. En vanlig komplikation vid KOL är exacerbationer. Detta försämringstillstånd ger tilltagande symtom och kan orsaka ökat vårdbehov. Syfte: Att sammanställa och beskriva upplevelser av exacerbationer för personer med KOL. Metod: En litteraturstudie med deskriptiv design. Genom databasen PubMed identifierades 12 vetenskapliga artiklar som bemötte litteraturstudiens inklusionskriterier och användes i studiens resultat. Huvudresultat: I resultatet framkom två huvudteman: ”Upplevelser av symtom” och ”Hantering”. Deltagare från valda studier framhävde olika upplevelser, hanteringsstrategier och påverkan av exacerbationer. Slutsats: KOL-exacerbationer har en negativ inverkan på den fysiska och psykiska förmågan samt sociala relationer. Personer som drabbats av exacerbationer tvingades anpassa sin vardag efter sjukdomens progression. Upplevelserna påverkades av deltagares kunskapsnivå om KOL generellt och vikten av att utföra egenvård. Individerna använde sig av olika strategier för att förebygga och hantera symtom som uppkom vid exacerbationer. Tankar som uppkom under exacerbationerna medförde en ökad motivation till livsstilsförändringar. Fortsatt forskning och utbildning om personers upplevelser av KOL-exacerbationer bidrar till ökad kunskap. Den grundutbildade sjuksköterskan kan genom ökad kunskap lättare anpassa sitt bemötande och utforma omvårdnaden efter personens individuella behov. / Background: Chronic obstructive pulmonary disease (COPD) is one of the most common causes of death in the world. COPD is a chronic disease that is irreversible and is mainly caused by tobacco smoking. A common complication of COPD is exacerbations. This state of deterioration causes increasing symptoms and can cause an enhanced need for care. Purpose: To compile and describe the experiences of exacerbations by people’s with COPD. Method: A literature study with a descriptive design. By using the PubMed database, 12 articles were identified that met the literature study's inclusion criteria’s and were used in the study's result. Main results: In the results, two main categories emerged: "Experiences of symptoms" and "Management". Participants from selected studies described different experiences, coping strategies and impact of exacerbations. Conclusion: COPD exacerbations have a negative impact on physical and mental ability as well as social relationships. People that are affected by exacerbations were forced to adapt their everyday life to the progression of the disease. The experiences were influenced by participants' level of knowledge about COPD in general and the importance of performing self-care. Individuals used different strategies to prevent and manage symptoms that occurred during exacerbations. Thoughts that came during the exacerbations led to an increased motivation for lifestyle changes. Continued research and education about people's experiences of exacerbations can contribute to increased knowledge. Through increased knowledge, nurses can more easily adapt the treatment and design the care to the person's individual needs.

Introduction: Mobile health applications (mHealth apps) may support people’s chronic obstructive pulmonary disease (COPD) self-management. Current research has demonstrated the promising effects of mHealth apps for people with COPD but there is still limited information on these apps’ characteristics and qualities, especially those in the public domain. Therefore, there is the need to use a standardized evaluation framework to: 1) describe characteristics and qualities of COPD apps from past studies; 2) characterize the features and qualities of public COPD apps; and 3) determine the appropriateness of public COPD apps from the perspective of clinicians and patients living with COPD. Methods: The mHealth Index and Navigation Database (MIND) framework, an objective evaluation tool was applied across studies. Project 1: A systematic review was conducted, including randomized controlled trials investigating interactive mHealth apps for people living with chronic lung diseases (CLD). Project 2: An evaluation study of the public marketplace (Android and Apple app stores) was conducted. Free mHealth apps created specifically for COPD self-management were included. Project 3: Reviewed COPD apps were presented to stakeholders in an infographic format. A RAND/UCLA Appropriateness Method (RAM) was used to collect feedback from stakeholders on the state of public COPD apps. Results: Many of the COPD apps trialed in past studies have inconsistent reports of their features and qualities, with many publicly unavailable. Most public COPD apps lacked clinical evidence to support their use and have questionable qualities. Stakeholders agreed that public COPD apps were mostly inappropriate but did not dismiss the need to discuss their potential in COPD care plans. Significance: This thesis project advocates for the partnership with multiple heath disciplines and patient-participants for app evaluations to gain stronger understanding of their potential. Future opportunities may include exploring other apps for lung diseases to promote stakeholder engagement throughout the process. / Thesis / Candidate in Philosophy

Bakgrund Kronisk obstruktiv lungsjukdom (KOL) är en utbredd folkhälsosjukdom som innebär att luftvägarna är kronisk obstruerade. Egenvård är en del av behandlingen för sjukdomskontroll. Fysisk aktivitet är rekommenderat för alla människor och är även del av egenvården för personer med KOL. Personer med KOL är trots det mer stillasittande än friska individer.  Syfte Syftet med studien var att beskriva erfarenheter av fysisk aktivitet hos personer med KOL. Metod Litteraturstudien är baserad på elva kvalitativa artiklar. Databaserna PubMed och CINAHL har använts och artiklarna kvalitetsgranskades enligt Olsson och Sörensens modell. Analysen utfördes enligt Fribergs femstegsmodell.  Resultat Arbetet resulterade i två kategorier: vikten av att vara i rörelse samt finna motivation till träning. Kategorierna bestod av tre subkategorier vardera.  Konklusion Litteraturstudiens resultat visade att med individanpassad motivation, träning och information ökade viljan att träna. Träning gav gemenskap, självförtroende och förbättrad symtomhantering vilket minskade rädslan för rörelse. Sjuksköterskan kan informera och motivera men bör anpassa det till individens behov och önskemål. / Background Chronic obstructive pulmonary disease (COPD) is a widespread disease which causes obstructed airways. Self-care is part of the treatment for disease management. Physical activity is recommended for everyone and is part of self-care for people with COPD. Despite that, people with COPD are more sedentary than healthy individuals.  Aim The aim of this study was to describe the experiences of psychical activity in people with COPD. Method This literary study is based on eleven qualitative articles. Databases used were PubMed and CINAHL and the quality of the articles were reviewed using a model from Olsson and Sörensen. The result analysis was based on a five-step model from Friberg.  Results The study resulted in two categories: the importance of staying active and finding the motivation to exercise. The categories consisted of three subcategories each.  Conclusion The results of the literary study showed that individualized motivation, training, and information increased the will to exercise. Training resulted in a feeling of fellowship, confidence and increased symptom management, which resulted in a reduction of fear of exercise. When a nurse provides information or attempts to motivate a person with COPD the strategy should be adapted to the person’s needs and wishes.

京都大学 / 新制・課程博士 / 博士(医学) / 甲第25178号 / 医博第5064号 / 京都大学大学院医学研究科医学専攻 / (主査)教授 羽賀 博典, 教授 伊達 洋至, 教授 森田 智視 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM

Yes / The increasing prevalence and associated cost of treating Chronic Obstructive Pulmonary Disease (COPD) is unsustainable, and focus is needed on self-management and prevention of hospital admissions. Telehealth monitoring of patients’ vital signs allows clinicians to prioritise their workload and enables patients to take more responsibility for their health. This paper reports the results of a qualitative study embedded within a feasibility and pilot Randomised Controlled Trial (RCT) of Telehealth-supported care within a community-based COPD supported-discharge service. The aim of the study was to qualitatively explore the experiences of patients with COPD who had received either a Telehealth-supported or a specialist nursing intervention following their discharge from hospital after an admission for a COPD exacerbation. Methods: Patients were invited to either participate in semi-structured interviews or to complete a semi-structured self-administered questionnaire on completion of the intervention. Nine patients were interviewed (67 % female) and seventeen patients completed the questionnaires. In addition, three clinicians responsible for the delivery of both interventions were interviewed to obtain their perspectives on the new services. Results: Seven underlying themes emerged from the patient interviews and were further explored in the questionnaires: (1) patient demographics; (2) information received by the participants; (3) installation of the Telehealth technology; (4) Telehealth service functionality; (5) visits; (6) service withdrawal; and (7) service perceptions. Recipients of both services reported feelings of safety derived from the delivery of an integrated, community-based service. Conclusions: Although recipients of the Telehealth service received 50 % fewer home visits from the clinicians than recipients of a more traditional community-based nursing intervention, the patients were enthusiastic about the service, with some describing it as the best service they had ever received. This suggests that a Telehealth intervention is an acceptable alternative to a more traditional home nursing visit model for monitoring community-based patients with COPD following their discharge from hospital.

No / Dear Editor In undertaking studies of palliative care in heart failure and chronic obstructive pulmonary disease (COPD) in the UK, we identified procedural, conceptual and ethical challenges that may arise from one feature of The End of Life Care Strategy for England.1 The strategy presents the question, ‘Would I be surprised if the person in front of me was to die in the next six months or one year?’ as a prompt to initiate discussion of endof-life care needs and preferences (paragraph 3.23). We believe this question is inappropriate in heart failure and COPD and its use will inhibit the initiation of a palliative care approach with these patients.

Bakgrund: Kronisk obstruktiv lungsjukdom (KOL) är en av de vanligaste diagnoserna i primärvården. En viktig del av astma/KOL sjuksköterskans roll är att motivera patientgruppen till ökad fysisk aktivitet då de ofta är fysiskt inaktiva på grund av sitt hälsotillstånd. Syfte: Syftet med studien var att beskriva astma/KOL sjuksköterskans erfarenheter av att motivera patienter med KOL diagnos till ökad fysisk aktivitet. Metod: Kvalitativ design med induktiv ansats valdes som metod och nio semistrukturerade intervjuerna genomfördes. Intervjuerna analyserades med hjälp av kvalitativ innehållsanalys. Resultat: Två kategorier framkom i analysen. I den första kategorin Strategier beskrevs olika tillvägagångssätt för hur astma/KOL sjuksköterskan motiverade patienterna till ökad fysisk aktivitet. I den andra kategorin Samverkan med andra framkom vikten av att samverka med andra professioner för patientens bästa, men även en fungerande samverkan mellan astma/KOL sjuksköterskor var av stor vikt. Slutsats: Astma/KOL sjuksköterskan beskrev att det var viktigt att hitta individanpassade strategier för att kunna motivera till ökad fysisk aktivitet. Att hjälpa patienten att hantera känslor av skam och skuld som ett led i att motivera var betydelsefullt enligt sjuksköterskorna. Beroende på vilket sjukdomsstadie patienten befann sig i kunde sättet att motivera se olika ut, men det var alltid den enskilda individen som satte ramen för på vilket sätt sjuksköterskorna motiverade. Anhöriga involverades endast till liten del. Då patienterna ofta var i behov av styrda råd användes motiverande samtal (MI) endast i liten utsträckning. Interprofessionell samverkan och samverkan mellan astma/KOL sjuksköterskor har betydelse för en bra vård för patientgruppen. Om mer tid och resurser ges ökar detta förutsättningarna till en bra vård. / Background: Chronic obstructive pulmonary disease (COPD) is one of the most common diagnoses in primary care. An important part of the asthma/COPD nurses’ role is to motivate the patient group to increased physical activity, as they are often physically inactive due to their state of health. Aim: The aim of the study was to describe the asthma/COPD nurses’ experiences of motivating patients with COPD diagnosis to increased physical activity. Method: Qualitative design with an inductive approach was chosen as the method. Nine structured interviews were conducted. The interviews were analyzed using qualitative content analysis. Results: Two categories emerged in the analysis. The first category Strategies described different approaches for how the asthma/COPD nurse motivated patients to increase physical activity. In the second category Collaboration with others, the importance of collaborating with other professions for the patient´s benefit emerged, but also a functioning collaboration between asthma/COPD nurses was of great importance. Conclusion: The asthma/COPD nurse described that it was important to find individualized strategies to be able to motivate increased physical activity. Helping the patient deal with feelings of shame and guilt as part of motivating was important according to the nurses. Depending on the patients stage of illness the motivation could look different, but it was always the individual who set the framework in which way the nurses motivated. Relatives were only slightly involved. As patients were often in need of guided counseling, Motivational Interviewing (MI) was used only to a small extent. Interprofessional collaboration and collaboration between asthma/COPD nurses is important for good care for the patient group. If more time and resources are given, this can increase the conditions for a good care.

SAMMANFATTNING Kronisk obstruktiv lungsjukdom (KOL) är en av de vanligaste dödsorsakerna i världen. KOL räknas som en av de kroniska sjukdomar där en stor del av vården bör ske inom primärvården. Studier visar att KOL på grund av underdiagnostik leder till sämre hälsa och livskvalitet. Med en allt äldre befolkning kommer allt fler drabbas av kronisk sjukdom, vilket kräver att vården bygger på god kvalité. Hur patienter upplever vårdkvalité blir allt viktigare i dagens sjukvård, eftersom vården bör baseras på personcentrerad vård. Patienters normer, förväntningar, erfarenheter och vårdens struktur beskriver vad vårdkvalité egentligen innebär och är en länk i ett förbättringsarbete. Astma-KOL sjuksköterskan bedriver mottagningsarbete, som har till syfte att ge patientutbildning om KOL och inhalationsteknik, motiverande samtal om motion och rökstopp, bedöma nutritionsstatus och utföra spirometrier. Med hjälp av Astma-KOL sjuksköterskans patientutbildning och stöd ökar livskvalité för patienter med KOL.   Syftet med studien var att beskriva hur patienter med KOL skattar vårdkvalité vid besöket hos Astma-KOL sjuksköterskan i primärvården.    Studiens metod är deskriptiv tvärsnittsstudie med kvantitativ ansats som bygger på KUPP frågeformulär. Femtio två deltagare hade besvarat formuläret under hösten 2015. Åtgärdsindex användes för att beskriva hur deltagarna upplevde vårdkvalitén.   Resultatet av studien visade att majoriteten av alla deltagare skattade att de fick vård av god kvalité. Ett flertal deltagare skattade att de fick bra information, bra bemötande och kände sig delaktiga, men att det spelade mindre roll för deltagarnas intresse. Män och kvinnor hade skattat frågor som rör egenvård, medkänsla och delaktighet olika.   Slutsatsen visar att det finns flera områden där förbättringsarbete kan vara av betydelse för att äldre patienter med KOL ska kunna uppleva vårdkvalité.       Nyckelord: Vårdkvalité, Astma-KOL sjuksköterska, KOL, primärvård, äldre. / ABSTRACT Chronic obstructive lung disease (COPD) is one of common causes in the world, which can lead to death. COPD is considered to be one of the chronic diseases where the major part of healthcare should be handled in the primary healthcare. Studies show that, when COPD is being underdiagnosed, it leads to poorer health and a decrease in quality of life for the patient. With an aging population, more people are affected by chronic illness which requires a healthcare system that provides good quality of care. How patients experience the quality of care will be of importance in the future, when their care should be person-centered. Patients standards, expectations, experiences and health care structure describes what the quality of care really means, and is a link in the development process. The asthma/COPD nurse has the role to conduct patient education, improve inhalations techniques, concentrate on their motivational interviewing regarding exercise as well as smoking cessation, assess their nutritional status, and to perform spirometry tests. Nurse's support and expertise creates the confidence and security for COPD patients and this increased knowledge aims to increase the quality of life for the patient.   The aim of the study was to describe how people with COPD experience the quality of the care when visiting the asthma/COPD nurse in a primary care clinic.   The studies method was a descriptive cross-sectional study with a quantitative approach based on the KUPP questionnaire. Fifty-two participants answered the questionnaire in the autumn of 2015. KUPP's action indices were used to describe how the participants experienced care quality.   The studies result found that the majority of participants estimated that they received care of good quality. Several participants estimated that they received good information, courteous care from the nurse and a feeling of involvement, but in reality it did not matter for the participant's interest. Men and women estimated the issues related to self-care, compassion and participation differently.   Conclusion shows several areas where improvements can be important for elderly patients with COPD so they can be able to experience quality of care.     Keywords: Quality of care, asthma/COPD nurse, COPD, primary care, elderly.

Es wurde untersucht, von welchen Umgangsformen mit Blick auf die Auseinandersetzung mit Tod und Sterben COPD-Patient:innen berichten und ob sich zwei Gruppen mit unterschiedlich ausgeprägter psychischer Belastung und Wohlbefinden dahingehend unterscheiden. Methoden: Es wurden 64 stationär hospitalisierte COPD-Patient:innen querschnittlich untersucht, mittels: Wortvervollständigungsliste zur Erhebung todesbezogener Konstrukte außerhalb der bewussten Wahrnehmung (Death-Thought Accessibility, DTA); einem offenen, narrativen Interview mit den Fragen (1): „Was beschäftigt Sie zur Zeit am meisten“ und (2): „Was bedeutet der Tod für Sie und wie gehen Sie damit um, dass auch Sie werden sterben müssen?“; Fragebogeninventar zur Messung der Einstellungen gegenüber Sterben und Tod (FIMEST) Patient Health Questionnaire (PHQ-D); Positive Affect Negative Affect Scale (PANAS); Satisfaction with Life Scale (SWLS). Außerdem wurde die somatische Krankheitsschwere mittels COPD-Stadium (GOLD) sowie Charlson Comorbidity Index (CCI) geratet. Ergebnisse: 21 Patient:innen wiesen eine geringe, 43 Patient:innen eine hohe psychische Belastung auf. Es gab keine Gruppenunterschiede in der allgemeinen Soziodemographie sowie somatischen Symptomschwere. Die Gruppen unterschieden sich nicht in der DTA. Ein Drittel der belasteten (34,9 %; n=15), jedoch nur 14,3 % (n=3) der weniger belasteten Gruppe gab bei Interviewfrage 1 eine Beschäftigung mit todesbezogenen Themen an. Die wenig belastete zeigte im Vergleich zur belasteten Gruppe ein häufigeres Vorkommen neutraler und/oder sinnorientierter (90,5 % vs. 67,4 %) und geringere Vorkommen auswegorientierter, demoralisierter und/oder Angst betonender (38,1 % vs. 65,1 %) sowie Verlust und/oder Angst betonender Aussagen (33,3 % vs. 62,8 %). Die wenig belastete Gruppe zeigte eine höhere Akzeptanz des eigenen Sterbens/eigenen Todes und eine geringere innerliche Ablehnung des eigenen Todes im FIMEST aber keine geringere Todesfurcht. Schlussfolgerungen: Todesbezogene Auseinandersetzungsprozesse zeigen Zusammenhänge mit der Ausprägung psychischer Gesundheit bei COPD. In der klinischen Versorgung kann eine entsprechende Berücksichtigung in der Anamnese als Diagnostikum und Einladung für die Versprachlichung innerer existenzieller Nöte dienen. Mit Blick auf das hohe Vorkommen todesbezogener Stressoren bei psychisch belasteten Patient:innen sind Schulungen von medizinisch-pflegerischen Berufsgruppen (death education) zur Sicherung der Behandlungsqualität sinnvoll.

The Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelinesare used to guide clinical practices for treating Chronic Obstructive Pulmonary Disease (COPD). GOLD focuses heavily on stable COPD patients, limiting its use fornon-stable COPD patients such as those with severe, acute exacerbations of COPD (AECOPD) that require hospitalization. Although AECOPD can be heterogeneous, it can lead to deterioration of health and early death. Electronic health records (EHRs) can be used to analyze patient data for understanding disease progression and generating guideline evidence for AECOPD patients. However, because of its structure and representation, retrieving, analyzing, and properly interpreting EHR data can be challenging, and existing tools do not provide granular analytic capabil-ities for this data.<div><br></div><div>This dissertation presents, develops, and implements a novel approach that systematically captures the effect of interventions during patient medical encounters, and hence may support evidence generation for clinical guidelines in a systematic and principled way. A conceptual framework that structures components, such as data storage, aggregation, extraction, and visualization, to support EHR data analytics for granular analysis is introduced. We develop a software framework in Python based on these components to create longitudinal representations of raw medical data extracted from the Medical Information Mart for Intensive Care (MIMIC-III) clinical database. The software framework consists of two tools: Patient Aggregated Care Events (PACE), a novel tool for constructing and visualizing entire medical histories of both individual patients and patient cohorts, and Mark SIM, a Markov Chain Monte Carlo modeling and simulation tool for predicting clinical outcomes through probabilistic analysis that captures granular temporal aspects of aggregated, clinicaldata.<br></div><div><br></div><div>We assess the efficacy of antibiotic treatment and the optimal time of initiationfor in-hospitalized AECOPD patients as an application to probabilistic modeling. We identify 697 AECOPD patients of which 26.0% were administered antibiotics. Our model simulations show a 50% decrease in mortality rate as the number of patients administered antibiotics increase, and an estimated 5.5% mortality rate when antibiotics are initially administrated after 48 hours vs 1.8% when antibiotics are initially administrated between 24 and 48 hours. Our findings suggest that there may be amortality benefit in initiation of antibiotics early in patients with acute respiratory failure in ICU patients with severe AECOPD.<br></div><div><br></div><div>Thus, we show that it is feasible to enhance representation of EHRs to aggregate patients’ entire medical histories with temporal trends and support complex clinical questions to drive clinical guidelines for COPD.<br></div>