Until recently, long-term effects of a critical illness (CI) have received little attention from intensive care staff, who have traditionally measured outcome from an intensive care unit (ICU) by morbidity and mortality. However, it is now acknowledged that CI is a continuum that begins before ICU and continues to impact on a patient�s quality of life after they have been discharged home. Measuring health related quality of life (HRQOL) is a complex matter due to its multifaceted, subjective and dynamic nature. There has been a lack of consensus in the literature regarding the most appropriate methodological approaches and measuring instruments to use. This disparity has impeded comparison between studies. The aim of this thesis was to review the literature between January 1998 and December 2003 that focused on HRQOL for patients after a CI to identify and summarise themes and key outcomes. There were two main areas of focus - the methods used to measure the effects of the CI, and evaluation of the patient outcomes. An electronic search for relevant articles was conducted using the common clinical research databases and key words such as health related quality of life, outcomes and critical illness. Reference lists from these articles and conference proceedings were reviewed to identify further studies. There were 74 primary papers identified that reflected a number of subcategories including general ICU, Acute Respiratory Distress Syndrome (ARDS), and elderly patients. There were four categories of instruments used in the literature including those that measured acuity of illness, physical functioning, psychological functioning and HRQOL. The majority of studies used more than one measuring instrument, most of which had been previously validated. Results from the studies were diverse, but it is apparent that physical and psychological recovery from a CI may be a slow and varied process. Most studies were observational; only one randomised control study examined the benefits of a physical exercise program for patients post-hospital discharge. In general, there was no evidence of how to translate the study findings into some form of structured program to assist the patient with any identified problems. To enhance continuum of care, integration of ICU, hospital and rehabilitation services could target identified physical and psychological problems to assist patient recovery. However, strong evidence on the benefits of initiatives such as inpatient follow-up, outpatient clinics and use of ICU diaries is yet to be demonstrated.

<p>”Bara du har hälsan är allting bra.” Stämmer detta? Hälsa har länge betraktats som avsaknad av ohälsa, men inkluderar i dag begreppet livskvalitet. Nöjdhet med livet består av många komponenter, tre som nämns ofta är ekonomi, sysselsättning och det sociala livet. Denna studie ämnar utröna hur sambanden ser ut mellan hälsa och nöjdhetsområdena ekonomi, sysselsättning samt det sociala livet. En enkätstudie utfördes på 98 studenter som skattade sin hälsa och nöjdhet. Studien fann låga samband förutom att hälsa korrelerade starkt med nöjdheten med det sociala livet. Studenter som har ett förhållande visade ett högre samband mellan hälsa och nöjdhet än singlar. Denna studie visade att hälsan är nödvändig men inte avgörande för studentens nöjdhet.</p>

<p>Abstract</p><p>The aim of this review was to describe how quality of life is experienced among patients with diabetes type 2. Literature search was made in Medline and the keywords used were “diabetes mellitus type 2” and “quality of life”. Twenty studies were examined and categorized into four sections: Quality of life during complications due to diabetes type 2, quality of life during various treatments, quality of life during depression and quality of life and aspects in relation to the individual as well as social aspects. The designs of the studies were of a varying kind: randomized controlled studies, comparative studies, correlative studies and descriptive studies. The studies were published between the years of 2003-2007 and most frequently occurring were questionnaires. Validity and reliability of the instruments used in the studies were examined and valued. The number of participants in the samples varied between 49-5145 persons. The results showed that diabetes type 2-complications had a negative impact on quality of life, although different treatments and self-care support had the opposite effect. Other aspects of importance to quality of life were the support of family and relatives, age, sex, education, physical function, civil status and personal background.</p>

<p>Oral complications and symptoms are common among patients with cancer. The aim of this thesis is to study several aspects of oral status, oral health and its relation to quality of life, and oral care among patients treated with radiotherapy or chemotherapy. Descriptive, comparative and correlational designs were used. </p><p>A series of consecutive patients admitted to a university hospital or a regional hospital to receive radiotherapy for head and neck cancer or chemotherapy for haematological malignancies, were studied prospectively with regard to oral symptoms and their relation to health-related quality of life using interviews and questionnaires, examination of the oral cavity and saliva tests. All nurses and enrolled nurses who worked with these patients or with patients with lung cancer were interviewed about their education and knowledge in oral care and performed oral care. The medical and nursing records on patients with these cancer diseases at the two hospitals were reviewed. </p><p>The results indicate that patients receiving radiotherapy experienced increasing oral symptoms, which remained to a large extent one month after treatment. Patients receiving chemotherapy did not experience oral symptoms to the same extent. The oral symptoms were significantly related to patients' health-related quality of life, particularly among those receiving radiotherapy. Data also indicate that there is a lack of adequate education and continuing education in oral care among nursing staff. All patients were not examined orally before or during treatment, nor did they receive sufficient information or instruction related to oral hygiene. Patient compliance with oral hygiene procedures was acceptable, although some patients reported difficulties. Oral status and oral care were insufficiently documented, particularly in nursing records. The attitudes to oral examination and discussion on oral hygiene differed between nursing staff and patients. Nursing staff objected to examining the oral cavity referring to patient integrity. This was not considered as a hindrance among patients. In conclusion, oral health is related to health-related quality of life, which motivates a multi-disciplinary approach to oral care. </p>

<p>The aim of this thesis was to investigate health-related quality of life (HRQoL) and coping strategies for individuals with ulcerative colitis (UC) or Crohn’s disease (CD), and to study the effect of a group-based patient information on anxiety/depression and HRQoL. HRQoL and anxiety/depression were investigated (n=492) (Study I). In Study II, anxiety/depression, HRQoL, satisfaction with information and evaluation of the patient information were studied (n=49). Coping with disease activity was investigated in 166 patients reporting current exacerbation (Study III). Fifteen patients were interviewed about disease-related stress, how this is managed and the need of support from the health care (Study IV). Patients with UC reported better HRQoL and less anxiety/depression than did patients with CD during both remission and exacerbation. Satisfaction with information had increased at follow-up 6 months after patient information. The information and the possibility to discuss with lecturers and group members were valued as most important. No change was found in anxiety/depression or HRQoL at follow-up. Both problem-focused and emotion-focused strategies were employed to cope with disease activity, with no difference between patients with UC or CD. The urgent need of toilet availability and stress associated to social situations were the major disease-related stressors. This stress was managed by finding out the location of toilets, bringing toilet paper and extra underwear and emptying bowel before an activity. The patients wanted information and possibilities to talk to experienced staff and to other patients about how to live with the disease. This thesis shows that HRQoL for some patients with UC, and primarily for patients with CD, is impaired. Thus medical staff should be observant of the psychosocial well-being of patients with CD and also of patients with relapse. Methods to identify and support patients with anxiety/depression and poor HRQoL need to be developed. Interventions should target the patient’s specific problems and at appropriate times.</p>

Introduction: Several national trials have demonstrated the efficacy of lifestyle interventions on decreasing the incidence of type 2 diabetes in adults with prediabetes. Behavior change pertaining to physical activity (PA) and diet were central to these lifestyle interventions; however it is likely a majority of adults with prediabetes are not currently meeting public health guidelines for PA and dietary intake. Little information is available on different influences of behavior central to prediabetes treatment. Given these findings, further investigation into potential influences on the efficacy of prediabetes service provision is warranted. Purpose: This dissertation aimed to explore prediabetes service provision to identify potential influences on PA and dietary intake in adults with prediabetes. Methods: The first study used Grounded Theory methodology to obtain opinions on necessary components of an optimal diabetes prevention program from health professionals (n=20) and adults with, or at high risk of, prediabetes (n=12). The second, third, and fourth studies involved individuals with prediabetes (N=232) in Northern Alberta, Canada. Participants completed a mailed survey assessing various demographic, health and behavior influences in August-September, 2008. Results: Data from Study 1 identified four influences on behavior change in adults with prediabetes: service provision, knowledge or confusion, motivational influences, and goal-setting. Potential strategies to increase effectiveness of prediabetes programs were also identified. In Study 2, individuals with prediabetes achieving PA guidelines (38%) reported higher physical and mental health-related quality of life compared to those not meeting PA guidelines. In Study 3, a number of preferences for PA and PA programming were identified. Activity status, health, and demographic variables all demonstrated significant influence on different PA preference variables. In Study 4, behavior-specific social cognitive theory constructs including self-efficacy, outcome expectations, and goal formation demonstrated significant associations with each other and PA, fat, and fibre intake. Conclusions: Evidence suggests it is possible to prevent or delay the progression of prediabetes to diabetes with small changes in body weight, physical activity and dietary intake. The results reported in this dissertation identified a number of factors that may influence potential success of a prediabetes program to promote behavior change and increase the public health impact of prediabetes prevention programs.

Oral complications and symptoms are common among patients with cancer. The aim of this thesis is to study several aspects of oral status, oral health and its relation to quality of life, and oral care among patients treated with radiotherapy or chemotherapy. Descriptive, comparative and correlational designs were used. A series of consecutive patients admitted to a university hospital or a regional hospital to receive radiotherapy for head and neck cancer or chemotherapy for haematological malignancies, were studied prospectively with regard to oral symptoms and their relation to health-related quality of life using interviews and questionnaires, examination of the oral cavity and saliva tests. All nurses and enrolled nurses who worked with these patients or with patients with lung cancer were interviewed about their education and knowledge in oral care and performed oral care. The medical and nursing records on patients with these cancer diseases at the two hospitals were reviewed. The results indicate that patients receiving radiotherapy experienced increasing oral symptoms, which remained to a large extent one month after treatment. Patients receiving chemotherapy did not experience oral symptoms to the same extent. The oral symptoms were significantly related to patients' health-related quality of life, particularly among those receiving radiotherapy. Data also indicate that there is a lack of adequate education and continuing education in oral care among nursing staff. All patients were not examined orally before or during treatment, nor did they receive sufficient information or instruction related to oral hygiene. Patient compliance with oral hygiene procedures was acceptable, although some patients reported difficulties. Oral status and oral care were insufficiently documented, particularly in nursing records. The attitudes to oral examination and discussion on oral hygiene differed between nursing staff and patients. Nursing staff objected to examining the oral cavity referring to patient integrity. This was not considered as a hindrance among patients. In conclusion, oral health is related to health-related quality of life, which motivates a multi-disciplinary approach to oral care.

The aim of this thesis was to investigate health-related quality of life (HRQoL) and coping strategies for individuals with ulcerative colitis (UC) or Crohn’s disease (CD), and to study the effect of a group-based patient information on anxiety/depression and HRQoL. HRQoL and anxiety/depression were investigated (n=492) (Study I). In Study II, anxiety/depression, HRQoL, satisfaction with information and evaluation of the patient information were studied (n=49). Coping with disease activity was investigated in 166 patients reporting current exacerbation (Study III). Fifteen patients were interviewed about disease-related stress, how this is managed and the need of support from the health care (Study IV). Patients with UC reported better HRQoL and less anxiety/depression than did patients with CD during both remission and exacerbation. Satisfaction with information had increased at follow-up 6 months after patient information. The information and the possibility to discuss with lecturers and group members were valued as most important. No change was found in anxiety/depression or HRQoL at follow-up. Both problem-focused and emotion-focused strategies were employed to cope with disease activity, with no difference between patients with UC or CD. The urgent need of toilet availability and stress associated to social situations were the major disease-related stressors. This stress was managed by finding out the location of toilets, bringing toilet paper and extra underwear and emptying bowel before an activity. The patients wanted information and possibilities to talk to experienced staff and to other patients about how to live with the disease. This thesis shows that HRQoL for some patients with UC, and primarily for patients with CD, is impaired. Thus medical staff should be observant of the psychosocial well-being of patients with CD and also of patients with relapse. Methods to identify and support patients with anxiety/depression and poor HRQoL need to be developed. Interventions should target the patient’s specific problems and at appropriate times.

Abstract The aim of this review was to describe how quality of life is experienced among patients with diabetes type 2. Literature search was made in Medline and the keywords used were “diabetes mellitus type 2” and “quality of life”. Twenty studies were examined and categorized into four sections: Quality of life during complications due to diabetes type 2, quality of life during various treatments, quality of life during depression and quality of life and aspects in relation to the individual as well as social aspects. The designs of the studies were of a varying kind: randomized controlled studies, comparative studies, correlative studies and descriptive studies. The studies were published between the years of 2003-2007 and most frequently occurring were questionnaires. Validity and reliability of the instruments used in the studies were examined and valued. The number of participants in the samples varied between 49-5145 persons. The results showed that diabetes type 2-complications had a negative impact on quality of life, although different treatments and self-care support had the opposite effect. Other aspects of importance to quality of life were the support of family and relatives, age, sex, education, physical function, civil status and personal background.

Objective. The overall aim of this thesis was to evaluate the biopsychosocial consequences after stroke and test the validity of the ICF Core Sets for Stroke during one year post-stroke. Material and Methods. Studies I, II and III were based on data from a prospective cohort study with 120 stroke survivors who were recruited at admission to stroke units in western Sweden and were followed-up at six weeks, three months and one year after stroke event. Repeated assessments were done through face-to-face interviews consisting of a battery of questions based on the Stroke ICF Core Set (59 categories of Body Functions, 59 of Activities and Participation and 37 of Environmental Factors) and several questionnaires (EuroQol-5D (EQ-5D), Stroke Impact Scale (SIS), Medical Outcome Study Short Form 36 (SF-36), Self administered Comorbidity Questionnaire (SCQ), information on health care and social services utilization and spouse support). Study IV was based on data from the multi-center cross-sectional validation study of the Stroke ICF Core Set with 757 stroke survivors from China, Germany, Italy and Sweden. Results. Study I: A total of 28 of 59 ICF categories of Body Functions and a total of 41 of 59 categories of Activities and Participation were significant problems for stroke survivors at six weeks and three months. These categories showed a good discriminative ability to distinguish between independent (≤ 2 on modified Ranking Scale (mRS)) and dependent (&gt; 2 on mRS) stroke survivors. Study II: Most stroke survivors felt satisfied with their stroke care and rehabilitation during three months post-stroke. Frequently perceived environmental facilitators could be documented with eleven of 37 ICF categories of Environmental Factors. Only physical geography, such as hills, was a common perceived barrier. Study III: Independent factors of health-related quality of life (HRQoL) varied over time. Almost all variance in HRQoL was explained by categories within Body Functions and within Activities and Participation during the first three months, while at one year only half of the variance could be explained by categories within either Body Functions or Environmental Factors. Problems with personal and energy functions, as well as limited recreational activities, were recurringly associated with poorer HRQoL. Study IV: It was possible to integrate ICF categories of Body Functions and Structures, Activities and Participation into a cross-cultural measurement with good reliability providing summary scores of the overall functioning of stroke survivors. However, the five-point ICF qualifier scale was not consistently applicable. Conclusions. The results of the present thesis showed that the ICF,particularly the ICF Core Set for Stroke, was a valid and practical tool for documenting the multi-faceted biopsychosocial problems and consequences after stroke structured with one common terminology throughout the long chain of care and rehabilitation. The opportunity to integrate ICF categories of Body Functions and Structures, Activities and Participation into a measurement provides new possibilities for monitoring, following-up and comparing overall functioning after stroke. / Syfte. Avhandlingen i sin helhet syftade till att fastställa de mångfaldiga biopsykosociala konsekvenserna under ett års tid efter stroke med hjälp av ICF och att testa validiteten av det nyetablerade Stroke ICF Core Set med avsikt att mäta funktionstillstånd efter stroke. Material och metod. I studie I, II och III ingår data från en ett års prospektiv kohortstudie med 120 personer med stroke som vårdades på strokeenheter i Västsverige och somföljdes upp efter sex veckor, tre månader och efter ett år. Datainsamlingen genomfördes med intervjuer som bestod av ett batteri av frågor grundat påStroke ICF Core Set, EuroQol-5D (EQ-5D), Stroke Impact Scale (SIS), Medical Outcome Study Short Form 36 (SF-36), Self-administered Comorbidity Questionnaire (SCQ), och information om insatser från hälso- och sjukvård, socialtjänst och familj. I studie I analyserades de 59 ICFkategorierna gällande Kroppsfunktioner och de 59 kategorier gällande Aktivitet och Delaktighet deskriptivt vid sex veckor och tre månader efter stroke. Därutöver prövades core sets förmåga att skilja mellan personer som var antingen beroende eller oberoende av hjälp efter stroke. Hur deltagarna uppfattade omgivningsfaktorernas betydelse analyserades deskriptivt utifrån de 37 ICF kategorierna från Omgivningsfaktorer i studie II vid sex veckoroch tre månader liksom skillnaderna mellan deltagarna som var hemma redan vid sex veckor och deltagarna som kom hem senare men inom tre månader. I studie III identifierades faktorerna av generell hälso-relaterad livskvalitet (EQ-5D visuell analog skala) med hänsyn till den biopsykosociala mångfaldigheten av hälsan och huruvida faktorerna ändrades under ett år efter stroke. Till detta användes korrelation- och regressionsanalys och de 155 ICF kategorier gällande Kroppsfunktioner, Aktivitet och Delaktighet samt Omgivningsfaktorer. Den pyskometriska analysen i studie IV baserades på datamaterial från WHO:s internationella multicentertvärsnittsstudie för validering av Stroke ICF Core Sets där 757 personer med stroke från Kina, Tyskland, Italien och Sverige ingår. Möjligheten att integrera 15 ICF kategorier från Brief ICF Core Set for Stroke (6 kroppsfunktioner, 2 strukturer, 7 aktiviteter och delaktighet) med dess 5-stegsbedömningsskala (från 0 till 4, inget, lätt, måttligt, stort och totalt problem) undersöktes både nationsspecifikt men också tvärkulturellt med Raschanalys. Resultat. Studie I. Signifikanta problem kunde dokumenteras med 28 ICF kategorierfrån komponenten Kroppsfunktion och med 41 ICF kategorier frånkomponenten Aktivitet och Delaktighet. Det fanns inga skillnader mellan 6veckor och 3 månader. Kategorierna hade en god förmåga att skilja mellan personer som var antingen oberoende eller beroende av hjälp efter stroke. Personer som var beroende av hjälp hade kontinuerlig mera problem inom området som gällde framförallt förflyttning, personlig vård och urinering men även kommunikation. Studie II. Deltagarna uppfattade elva omgivningsfaktorer som underlättande vid sex veckor och vid tre månader (framförallt familj, vänner och hälso- ochsjukvårdspersonal men också hjälpmedel, medicin och hälso- och sjukvårdsservice) och endast en faktor (fysisk geografi, dvs. backe, grusvägar, etc.) som hindrande. Vid tre månader uppfattades de sistnämnda faktorerna vanligare som hindrande än vid sex veckor. Vården på strokeenheten upplevdes något bättre jämfört med den senare tillkomna servicen från primär- och kommunvård. Studie III. Medan kroppsfunktioner och aktiviteter och delaktighet kunde förklara nästan all varians av självupplevd hälsa under de första tre månaderna (R2=0.80 - 0.93), så kunde bara hälften av variationen förklaras antingen med kroppsfunktioner eller med omgivningsfaktorer (R2=0.51). Problem med fritidsaktiviteter, personlighet, mental uttröttbarhet ochgångförmåga var återkommande problem som var relaterat till sämre självupplevd hälsa under året efter insjuknandet. Studie IV. Efter justeringar som innebar en minskning av bedömningsskalan till mellan två till tre svarsalternativ för vissa kategorier och en borttagning av några kategorier som inte passade in i Raschmodellen visade de resterande ICF kategorierna en bra täckning av personernas funktionstillstånd efter stroke och en god reliabilitet för att mäta funktionstillstånd. I den tvärkulturella analysen fanns det fyra kategorier sominte hade samma betydelse i de olika länderna. Därför utformades nationsspecifika kategorier. Det slutliga tvärkulturella instrumentet omfattar 20 ICF kategorier. Därmed blir det möjligt att integrera olika ICF kategorier till ett instrument och summera bedömningsvärden av de olika kategorierna till ett helhetsvärde för funktionstillstånd som underlättar uppföljning av och jämförelse mellan personer med stroke men även jämförelse mellan olika nationer. Slutsats. Studierna visar att ICF, och särskilt det specifika Stroke ICF Core Set, är ett valid och praktiskt verktyg för att strukturerat kunna dokumentera de mångfaldiga problemen och konsekvenserna efter stroke enhetlig genom hela förloppet av vårdkedjan. Strokesjukvården i Sverige upplevs som välfungerande men en god förbättringspotential finns framförallt i senare skede när primär- och kommunvård ta över ansvaret för personernas vård och rehabilitering. För dokumentation av funktionstillstånd av den typiska äldre patienten med stroke kan de 166 ICF kategorierna reduceras till 92. Faktorer som påverkar hälsorelaterad livskvalitet varierar under tiden efter insjuknandet där kroppsfunktioner och aktiviteter och delaktighet är starkt relaterade under de första tre månaderna. Vid ett år efter insjuknandet har omgivningens betydelse ökat för hälsorelaterad livskvalitet. Tidig hänsyn inte bara till gångförmåga men också till problem med personlighet och temperament, mental uttröttbarhet och återgång till fritidsaktiviteter borde kunna förbättra personernas livskvalitet efter stroke. Att konstruera ett tvärkulturellt instrument i syfte att mäta funktionstillstånd efter stroke genom integrering av ICF kategorier som omfattar kroppsfunktioner, strukturer, och aktiviteter och delaktighet är möjligt. Därmed öppnas nya potentialer för att kunna följa upp och jämföra funktionstillstånd efter stroke inte enbart på individ- och nationell nivå men även på populations- och internationell nivå. Den 5-stegs bedömningsskala (ICF qualifier) är dock inte psykometrisk användbart och fortsatt forskning behövs.