京都大学 / 0048 / 新制・課程博士 / 博士(医学) / 甲第18514号 / 医博第3934号 / 新制||医||1006(附属図書館) / 31400 / 京都大学大学院医学研究科医学専攻 / (主査)教授 上本 伸二, 教授 三森 経世, 教授 長田 重一 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM

京都大学 / 0048 / 新制・論文博士 / 博士(医学) / 乙第12978号 / 論医博第2104号 / 新制||医||1012(附属図書館) / 32448 / 京都大学大学院医学研究科医学専攻 / (主査)教授 三森 経世, 教授 椛島 健治, 教授 生田 宏一 / 学位規則第4条第2項該当 / Doctor of Medical Science / Kyoto University / DFAM

京都大学 / 0048 / 新制・論文博士 / 博士(医学) / 乙第13166号 / 論医博第2153号 / 新制||医||1029(附属図書館) / (主査)教授 一山 智, 教授 松原 和夫, 教授 万代 昌紀 / 学位規則第4条第2項該当 / Doctor of Medical Science / Kyoto University / DFAM

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Bakgrund: I Europa drabbas 1 av 198 individer av Ulcerös kolit och 1 av 310 individer av Crohns sjukdom. Ulcerös kolit och Crohns är kroniska, inflammatoriska tarmsjukdomar (IBD) som drabbar olika delar av mag-tarmkanalen, vilket resulterar i påfrestande symtom och behandlingar som påverkar livet. Genom att begripa individens upplevelse av sjukdomen kan sjuksköterskan bidra till ökat välbefinnande och minskat lidande. Syfte: Syftet var att undersöka patienters upplevelse av att leva med inflammatorisk tarmsjukdom. Metod: Som metod genomfördes en litteraturstudie. Från databaserna Cinahl och PubMed valdes fjorton kvalitetsgranskade artiklar som utgjorde grunden för den kvalitativa analysen. Väsentliga delar från artiklarna samlades in, sammanställdes och kategoriserades utifrån patientens upplevelse. KASAM (känsla av sammanhang) valdes som teoretisk referensram. Resultat: Resultatet delades in i tre huvudkategorier: Påverkan på vardagen, psykisk påverkan samt kunskap, stöd och acceptans. Resultatet påvisar upplevelsen av att leva med IBD vilket genererar i flera känslor som sorg, utsatthet, skam, skuld, rädsla med mera. IBD har en tydlig påverkan på det dagliga livet där familj, relationer och vänner är inkluderade. Sjukdomen beskrivs också generera i en förändrad självkänsla på grund av en stor livsförändring. Drabbade lyfter även upplevelsen av information, kunskap och stöd och hur det har påverkat acceptansen. Slutsats: Slutsatsen belyser tydliga likheter av upplevelsen av att drabbas av IBD. Information och kunskapsbrist framkommer som ett tydligt hinder, vilket påverkar vardagen och det sociala. Genom bättre information, personcentrerad vård och individanpassat stöd skulle den drabbade uppnå en högre nivå av KASAM, vilket skulle utveckla strategin för egenvård, hantering samt den bidragande sociala isoleringen.

Introduction: Colorectal cancer (CRC) survivors may experience functional deficits due to cancer-associated impairments. However, we do not understand their type and extent of functional deficits and how we could measure the associated cause of functional deficits, such as fatigue. As the survival of CRC survivors improves, the burden of living with functional deficits can be high. Purpose: My research program aims to understand (1) the functional changes and deficits that CRC survivors experience and (2) how to best measure fatigue in this population. Methods: To address the first aim, we used the data from the International Study of the Risk Factors for Gastrointestinal Bleeding and Cardiovascular Events after Gastrointestinal Bleeding to examine individuals’ functional abilities within 1 year of gastrointestinal cancer diagnosis (CRC being the most prevalent type). For the second aim, we conducted a systematic review on fatigue measures in adults with inflammatory bowel disease (IBD) because the causes, severity, and impact of IBD and CRC- related fatigue might be similar. We identified fatigue measures in the IBD population, appraised their psychometric properties, and recommended the most psychometrically robust and feasible measures for clinical and research use, indicating the optimal measures for CRC survivors. Results: After gastrointestinal cancer diagnosis, the majority (~70%) performed fewer functional tasks, mostly in the instrumental activities of daily living; and about 44% had more difficulty walking. Our review identified 16 measures, reviewed the content and psychometric properties, and recommended the Functional Assessment of Cancer Therapy Instrument-Fatigue and the IBD- Fatigue scale for research and clinical use in IBD and CRC populations. Conclusion: We provided a novel understanding of the functional deficits that CRC survivors experience and recommended the optimal measures for assessing CRC-related fatigue. As CRC survivors commonly experience fatigue, fatigue should be measured to understand its role in the functional abilities of CRC survivors. / Thesis / Master of Science Rehabilitation Science (MSc) / More people are living with colorectal cancer (CRC), but may have problems performing their daily activities (i.e. functional problems) due to cancer-associated impairments. However, we do not understand the extent of these impairments and functional problems. We used a sample of people with newly-diagnosed gastrointestinal cancer (CRC being the most common type) to understand their type and extent of functional problems. People were found to participate less in functional activities and particularly have more difficulty walking after a cancer diagnosis. Fatigue is common among those with CRC and may primarily cause functional problems. However, it is not commonly measured, and it is unclear how to best measure fatigue among them. Therefore, we reviewed key qualities of 16 fatigue measures in a similar population (inflammatory bowel disease, IBD) and recommended the Functional Assessment of Cancer Therapy Instrument-Fatigue and the IBD-Fatigue scale (English) as the most promising measures for those with CRC.

As of 2012, 233,000 Canadians were reported to be living with inflammatory bowel disease (IBD), 2.5% of which were <18 years of age. In Ontario, the incidence of pediatric IBD is ~11.8 per 100,000 population, which is one of the highest rates in the world. Youth with IBD experience numerous health problems secondary to their diagnosis, including poor fitness and lower lean mass. The extent to which youth with IBD can respond to an exercise training program designed to improve fitness remains unknown. The aim of this thesis was to assess the safety, feasibility and physiological efficacy of an exercise training program for youth in remission from IBD. Additionally, we attempted to understand the barriers and facilitators to physical activity in this population. A total of 104 patients were approached to participate in this study, 18 demonstrated interest and 11 consented to participate. Ten youth (nine males, age: 15.4±1.2 years) with IBD completed the study. Participants trained three times per week (2d in lab, 1d at home) for 16 weeks. Training sessions lasted 30 to 60 minutes, and consisted of a customized combination of aerobic and resistance exercises. Fat mass and lean mass were measured via Dual Energy X-ray Absorptiometry. Isometric and isokinetic torque of elbow flexion and knee extension were evaluated using an isokinetic dynamometer system. Peak oxygen consumption (VO2peak) and peak mechanical power (Wpeak) were determined using the McMaster All-Out Continuous cycling test. Barriers and facilitators to physical activity were measured via qualitative interviews pre-training. Body composition, muscle strength and aerobic fitness variables were measured at baseline, after 8 weeks, and after 16 weeks of training. Participants completed 89.1±5.2% of lab training sessions and 55.0±26.5% of home training sessions. There were significant increases in whole body lean mass (p<0.001), isokinetic knee extension strength (p<0.05) and Wpeak (p<0.001) over the course of the training program with small, moderate and large effect sizes respectively. All participants were in remission post-training, demonstrated small deviations in features of disease activity and reported no adverse events with training. Participants described similar barriers and facilitators to physical activity, to those of the general public, such as lack of access to facilities and peer support, respectively. Additionally barriers and facilitators unique to individuals with this condition were identified including the physical burden of disease (e.g., episodic abdominal pain) and creating modifications to activities to facilitate accessibility. Our results demonstrate that exercise training in youth in remission from IBD is safe, feasible and has the capacity to counteract a broad range of secondary symptoms such as deficits in lean mass, muscle weakness and aerobic deconditioning. Youth with IBD should be encouraged to exercise on a regular basis. Results from this study will inform the design of a larger, randomized controlled trial. / Thesis / Master of Science in Kinesiology

Detta är en kvalitativ studie med fenomenologisk ansats, som beskriver kvinnor med Irritable Bowel Syndrome (IBS) och deras upplevelser av sjukdomen. Vårt syfte med studien är att öka kunskapen och förståelsen hos sjuksköterskor och övrig vårdpersonal, genom att låta kvinnor med diagnosen IBS beskriva sina upplevelser av att leva med syndromet samt hur de blivit bemötta vid kontakter med sjukvården. Målsättningen är att det holistiska omhändertagandet av patienten skall förbättras. Studien baseras på semistrukturerade intervjuer med sju diagnostiserade kvinnor. Materialet har sedan bearbetats utifrån Philip Burnards modell för textanalys. Resultaten presenteras i följande kategorier sociala aktiviteter, sociala relationer, okunskap, bemötande och utredning, vilka kan relateras till de aktuella frågeställningarna (1) Hur upplever kvinnor med IBS att sjukdomen påverkar deras dagliga liv? Och (2) Hur upplever kvinnor med IBS att de blivit bemötta vid kontakter med sjukvården. Våra resultat ger en uppfattning av hur kvinnorna upplever att deras IBS påverkar det dagliga livet. Utmärkande för studiepopulationen är upplevelser av att sociala relationer och sociala aktiviteter förändrats till följd av sjukdomen. Gällande bemötande vid kontakter med sjukvården upplever kvinnorna att de bemötts med okunskap från sjuksköterskor och annan vårdpersonal. De upplever sig dessutom ofta åsidosatta och lågprioriterade av sjukvårdssystemet. / This is a qualitative study with a phenomenological approach, about females with Irritable Bowel Syndrome (IBS). The purpose of the study is to increase the knowledge and understanding among nurses and other caring personnel, by letting females diagnosed with IBS describe their experiences of living with the syndrome, and how they have been treated in contacts with the Swedish healthcare system. The intention of the study is that the holistic care should be improved. The study is based on seven semi-structured interviews of IBS-diagnosed females. The data has been analysed with Burnard´s method for transcripts. The results are presented in the following categories social activities, social relations, ignorance, treatment, analysis, which can be related to the actual questions of the study: (1) How do females with IBS experience that the illness affects their daily life? and (2) How do females with IBS experience the treatment in contacts with the Swedish care-system? The results have been presented in categories that can be related to the empiric questions in the study. The results of the study give us a conception of how IBS influences the daily life. Distinguishing for the study population is their experiences of changes in their social activities and relations due to their illness. About treatment in contacts with the Swedish healthcare system the females experience that they have been treated with ignorance from nurses and other health care personnel. They also experience themselves as disregarded and low prioritised by the healthcare system.