Å leve med kronisk tarmbetennelse. : Noen personers erfaringer

Oppgavens tema er kronisk tarmbetennelse, nærmere bestemt; ulcerøs kolitt og Crohns sykdom. Medisinske forklaringsmodeller og behandlingssyn har preget forståelsen av ulcerøs kolitt og Crohns sykdom gjennom tidene, så vel som i dagens medisinske forståelse. Resultater fra medisinsk forskning på feltet viser at personer med kronisk tarmbetennelse har nedsatt ”livskvalitet”, og at det å leve med kronisk tarmbetennelse er ”sosialt belastende”. Særlig synes dette å gjelde kvinner. Oppgaven tar utgangspunkt både i disse forskningsfunn, og en medisinsk og kulturhistorisk gjennomgang av hvordan ulcerøs kolitt og Crohns sykdom har blitt utlagt i utvalgt litteratur. Disse perspektiver brukes som et bakgrunnsteppe for oppgavens spørsmål; som omhandler erfaringer fra å leve med Ulcerøs kolitt og Crohns sykdom. Oppgaven har til hensikt å få frem kunnskap om hvilke erfaringer personer selv gir uttrykk for når det gjelder sin sykdom og situasjon. Undersøkelsen er forankret i en kvalitativ forskningstradisjon. Intervju med tre kvinner og tre menn, samt materiale fra legekonsultasjoner i sykehuset utgjør forskningsmaterialet. To teoretiske perspektiver brukes i analysene. Det ene er fenomenologi, og særlig filosofen Maurice Merleau-Pontys perspektiv på kroppen som levd erfaring. Det andre er kulturhistoriske perspektiver. Blant andre Mary Douglas kulturantropologiske analyser av hvordan kulturer etablerer forestillinger om rent og urent, og hvordan slike forestillinger kan forstås som symbolske grensemarkeringer, og sosiolog Per Solvang som belyser hvordan skillet mellom ”normalt” og ”unormalt” kan forstås som et behov for en sosial orden. Perspektivene brukes for å få fram at den kulturelle konteksten har sin referanse i hvordan ”idealkroppen” femstilles, både i media, men også innenfor legemiddelindustriens ”reklamer” for sine produkter, og hvordan dette også er forståelser personenes erfaringer innveves i. Analysene er tematisk og inndelt i to hovedkapitler. Temaene er knyttet opp til det dialektiske forholdet mellom subjektet, verden og andre mennesker. Resultatene peker på at det å leve med kronisk tarmbetennelse er nært knyttet til forholdet til kroppen og forholdet til andre. Analysen av materialet får frem at erfaringene informantene gjør seg er komplekse og tvetydige. Helse og sykdom erfares i ulik grad ut fra hver enkelts situasjon. Kulturelle forestillinger om hvordan ”normalt” og ”unormalt” defineres, og hvordan helse forstås, er fremtredende i informantenes erfaringer. Mennene er opptatt av hvordan kroppen til enhver tid fungerer, og dette fremheves som betydningsfullt for deres opplevde helse. Kroppens utseende og hvordan de tror andre opplever dem innveves i erfaringene og blir grunnleggende for hvordan de vurderer seg selv. Analysene gir ”en pekepinn” på forholdet mellom menn når det gjelder hvor kjønnede vurderinger av hverandre gjøres gjeldende. Kvinnene uttrykker snarere at de tenker at andre ser på dem på en måte de opplever som objektiverende. De fremhever at relasjonene til andre endres i takt med sykdomserfaringene. Både kvinnene og mennene uttrykker at objektivering av kroppen er noe de må forholde seg til, og de ”dras inn i” både selvobjektivering og sterkt personlig erfart ansvarsfølelse for helsen sin. De individuelle erfaringene kan sees i et spenningsfelt mellom egne og andres opplevelse av og forventninger til hvordan ”annerledes” kropp kan leves så ”normalt som mulig”

Sense of Coherence in Patients with Inflammatory Bowel Disease

Background and Aim. Sense of coherence (SOC) is a health-promoting concept reflecting a person's view of life and response to stressful situations and may be of importance in coping with chronic illness. The aim of this study was to explore associations between SOC and sociodemographic, disease-related, and personal characteristics in a sample of patients with inflammatory bowel disease (IBD). Methods. Measures included sociodemographic and disease-related data, the Sense of Coherence Scale, General SelfEfficacy Scale (GSE), and Fatigue Severity Scale (FSS-5). Results. In total, 428 IBD patients had evaluable questionnaires (response rate 93%). The overall mean SOC total score was 66.25 (SD 11.47) and with no statistically significant difference between patients with ulcerative colitis (UC) and patients with Crohn's disease (CD). In the multivariate analyses, higher GSE scores were significantly associated with higher SOC scores and higher FSS-5 scores were significantly associated with lower SOC scores in both UC and CD. Conclusion. GSE and FSS-5 contributed more to the variance in SOC than sociodemographic and disease-related variables. Longitudinal studies are warranted to investigate the value of SOC as a predictor of disability, medication adherence, coping behavior, and health-related quality of life

Sense of Coherence in Patients with Inflammatory Bowel Disease

Background and Aim. Sense of coherence (SOC) is a health-promoting concept reflecting a person’s view of life and response to stressful situations and may be of importance in coping with chronic illness. The aim of this study was to explore associations between SOC and sociodemographic, disease-related, and personal characteristics in a sample of patients with inflammatory bowel disease (IBD). Methods. Measures included sociodemographic and disease-related data, the Sense of Coherence Scale, General Self-Efficacy Scale (GSE), and Fatigue Severity Scale (FSS-5). Results. In total, 428 IBD patients had evaluable questionnaires (response rate 93%). The overall mean SOC total score was 66.25 (SD 11.47) and with no statistically significant difference between patients with ulcerative colitis (UC) and patients with Crohn’s disease (CD). In the multivariate analyses, higher GSE scores were significantly associated with higher SOC scores and higher FSS-5 scores were significantly associated with lower SOC scores in both UC and CD. Conclusion. GSE and FSS-5 contributed more to the variance in SOC than sociodemographic and disease-related variables. Longitudinal studies are warranted to investigate the value of SOC as a predictor of disability, medication adherence, coping behavior, and health-related quality of life

Self-esteem in patients with inflammatory bowel disease

publishedVersio

Health-related quality of life in patients with newly diagnosed inflammatory bowel disease: an observational prospective cohort study (IBSEN III)

Purpose This unselected, population-based cohort study aimed to determine the level of health-related quality of life (HRQoL) in patients with Crohn’s disease (CD) and ulcerative colitis (UC) at the time of diagnosis compared with a reference population and identify the demographic factors, psychosocial measures, and disease activity markers associated with HRQoL. Methods Adult patients newly diagnosed with CD or UC were prospectively enrolled. HRQoL was measured using the Short Form 36 (SF-36) and Norwegian Inflammatory Bowel Disease Questionnaires. Clinical significance was assessed using Cohen’s d effect size and further compared with a Norwegian reference population. Associations between HRQoL and symptom scores, demographic factors, psychosocial measures, and disease activity markers were analyzed. Results Compared with the Norwegian reference population, patients with CD and UC reported significantly lower scores in all SF-36 dimensions, except for physical functioning. Cohen’s d effect sizes for men and women in all SF-36 dimensions were at least moderate, except for bodily pain and emotional role for men with UC and physical functioning for both sexes and diagnoses. In the multivariate regression analysis, depression subscale scores ≥ 8 on the Hospital Anxiety and Depression Scale, substantial fatigue, and high symptom scores were associated with reduced HRQoL. Conclusion Patients newly diagnosed with CD and UC reported statistically and clinically significantly lower scores in seven of the eight SF-36 dimensions than the reference population. Symptoms of depression, fatigue, and elevated symptom scores were associated with poorer HRQoL.publishedVersio

Inflammatory bowel disease in South-Eastern Norway III (IBSEN III): a new population-based inception cohort study from South-Eastern Norway

Background and aim: Modern treatment strategies for inflammatory bowel disease (IBD) are postulated to change the natural disease course. Inception cohort studies are the gold standard for investigating such changes. We have initiated a new population-based inception cohort study; Inflammatory bowel disease in South Eastern Norway III (IBSEN III). In this article, we describe the study protocol and baseline characteristics of the cohort. Methods: IBSEN III is an ongoing, population-based observational inception cohort study with prospective follow-up. Adult and pediatric patients with suspected IBD in the South-Eastern Health Region of Norway (catchment area of 2.95 million inhabitants in 2017), during the 3-year period from 2017 to 2019, were eligible for inclusion. Comprehensive clinical, biochemical, endoscopic, demographic, and patient-reported data were collected at the time of diagnosis and throughout standardized follow-up. For a portion of the patients, extensive biological material was biobanked. Results: The study included 2168 patients, of whom 1779 were diagnosed with IBD (Crohn's disease: 626, ulcerative colitis: 1082, IBD unclassified: 71). In 124 patients, there were subtle findings indicative of, but not diagnostic for, IBD. The remaining 265 patients were classified as symptomatic non-IBD controls. Conclusion: We have included patients in a comprehensive population-based IBD cohort from a catchment population of 2.95 million, and a unique biobank with materials from newly diagnosed and treatment-naïve IBD patients and symptomatic non-IBD controls. We believe this cohort will add important knowledge about IBD in the years to come.publishedVersio

Patients with inflammatory bowel disease on immunosuppressive drugs: perspectives’ on COVID-19 and health care service during the pandemic

Background and aims Patients with inflammatory bowel diseases (IBD) have experienced changes to the routine management because of the SARS-CoV-2 pandemic. The aim of this study was to examine patients with IBD’s adherence to the restrictions imposed by society and the hospital, worries and concerns regarding medical treatment and clinical follow-up under the pandemic. Methods IBD patients (≥18 years) at the outpatient clinic at Oslo University Hospital were included and answered a self-report questionnaire including concerns regarding their disease, medical therapy and follow-up during SARS-CoV-2 pandemic. Results In total, 522 IBD patients were included, 317 Crohn’s disease, 205 ulcerative colitis, 386 patients <50 years. Eighteen percent were in obligatory quarantine, and more often patients <50 years compared to patients ≥50 years. Five patients tested positive to SARS- CoV-2. A higher proportion <50 years reported worries for their medical treatment and risk of COVID −19 disease compared to those ≥50 years. Forty percent avoided family, two-thirds avoided friends, and 4% cancelled their scheduled consultation at the hospital. The hospital changed physical consultation to telephone consultation for 15% of the patients. The preferred follow-up was physical consultation. A higher proportion of the patients <50 years preferred telephone consultation compared to those ≥50 years. Four out of five IBD patients were satisfied with the information about their IBD and COVID-19. Conclusions SARS-CoV-2 pandemic affects the daily lives for patients with IBD. It is important to develop evidence-base guidelines in follow-up and treatment, as well as patient information about COVID-19and IBD

Psychometric limitations of the 13-item Sense of Coherence Scale assessed by Rasch analysis

Background A person’s sense of coherence (SOC) reflects their perception that the world is meaningful and predictable, and impacts their ability to deal with stressors in a health-promoting manner. A valid, reliable, and sensitive measure of SOC is needed to advance health promotion research based on this concept. The 13-item Sense of Coherence Scale (SOC-13) is widely used, but we reported in a previous evaluation its psychometric limitations when used with adults with morbid obesity. To determine whether the identified limitations were specific to that population or also generalize to other populations, we have replicated our prior study design and analysis in a new sample of adults with inflammatory bowel disease (IBD). Methods A sample of 428 adults with IBD completed the SOC-13 at a routine clinic visit in Norway between October 1, 2009 and May 31, 2011. Using a Rasch analysis approach, the SOC-13 and its three subscales were evaluated in terms of rating scale functioning, internal scale validity, person-response validity, person-separation reliability and differential item functioning. Results Collapsing categories at the low end of the 7-category rating scale improved its overall functioning. Two items demonstrated poor fit to the Rasch model, and once they were deleted from the scale, the remaining 11-item scale (SOC-11) demonstrated acceptable item fit. However, neither the SOC-13 nor the SOC-11 met the criteria for unidimensionality or person-response validity. While both the SOC-13 and SOC-11 were able to distinguish three groups of SOC, none of the subscales could distinguish any such groups. Minimal differential item functioning related to demographic characteristics was also observed. Conclusions An 11-item version of the sense of coherence scale has better psychometric properties than the original 13-item scale among adults with IBD. These findings are similar to those of our previous evaluation among adults with morbid obesity and suggest that the identified limitations may exist across populations. Further refinement of the SOC scale is therefore warranted

Health-related quality of life among 13–14 year old adolescents with overweight−a mixed methods approach

Background: Overweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study, Young & Active, with the aim of increasing physical activity (PA), reducing BMI and promoting HRQoL. Methods: Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents’ HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13–14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52. Results: HRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub- scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. Conclusion: The use of the KIDSCREEN 52 instrument gave important indications about the adolescents’ HRQoL and need for additional follow up. The qualitative data provided an in-depth understanding that nuanced the findings and widened our knowledge of the adolescents HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL