During the 1980’s the non-profit organisation RAND Corporation conducted the two-year Medical Outcomes Study with the goal of creating a comprehensive medical questionnaire. The resulting 116-item questionnaire measures health related quality of life (HRQoL) topics such as physical, mental and general health. The questionnaire is available as a free resource on their web page. SF-36, which contains 36 of these questions, is distributed for a fee by the US company Quality Metric Inc. The company has translated the questionnaire into several languages, including Swedish, and has also taken license for the translations. Registercentrum sydost has made a new Swedish translation of the same questions as in the SF-36. This survey is called RAND-36 and is license free. Because Quality Metric Inc has taken license for its Swedish translation, the surveys are similar but not identical. This study aims to compare the aforementioned HRQoL-instruments to determine whether it is possible to replace the licensed questionnaire SF-36 with the license free RAND-36. The distribution of items with response options according ordinal scale were compared with Mann-Whitney U-test. The test yielded a significant difference for eight items in the measure PF(physical functioning), MH(mental health), VT (vitality) and GH (general health perceptions). The distribution of items with response options according dichotomous scale were compared with X2-test. The test yielded significant difference for an item in the measure RE (emotional role functioning). The reliability of questionnaire was compared with ordinal alpha. In the selection the reliability between MH and VT is equivalent. The biggest difference between the surveys is the measure RP (physical role functioning) where the RAND-36 meets the requirement that the measure can be used for reliable conclusions on the individual level, which is a condition that SF-36 can’t met. The probability of entering an answer, given the respondent's ability, was compared with Rasch analysis. Wald's test gave DIF between most items within the measures PF, MH, VT and GH.

Syfte: Syftet  med  studien var  att undersöka  om  det  finns  en skillnad  i  livskvalité mellan  individer  med  transfemoral  amputation  som använder  mikroprocesstyrd knäkomponent (MPK) respektive mekanisk knäkomponent (Mek.). Design: Tvärsnittsstudie Försökspersoner: 14 protesbrukare  med unilateral transfemoral amputation (10 män, 4 kvinnor; 4 Mek., 10 MPK), amputerade på grund av trauma, kongenital orsak, infektion eller tumör och som använt sig av samma typ av knäled i minst ett år. Metod: För  att  studera  livskvalité  i  målpopulationen  genomfördes  en enkätundersökning bestående av RAND-36 samt kompletterande frågor. Deltagarna fördelades i två grupper med avseende på knäkomponent för att möjliggöra analys av resultaten. Resultat: Ingen signifikant  skillnad  i livskvalité uppmättes mellan  grupperna. De största  skillnaderna observerades  dock  i  den fysiska-  (Mek.:  0 MPK:  50) och emotionella (Mek.: 41,75 MPK: 100) rollfunktionen. Slutsats: Resultatet  i  studien  visade  ingen  signifikant  skillnad i  livskvalité mellan grupperna. Vidare  bör  mer  specifika  mätinstrument,  inriktade  mot  individer  med amputation, användas för att undersöka livskvalité i målpopulationen. / Purpose: The purpose of the study was to investigate if there is a difference in qualityof  life  (QoL)  between  individuals  with  a  transfemoral  amputation  usingmicroprocessor-controlled  knee  components  (MPK)  versus  mechanical  kneecomponents (Mech.). Design: Cross-sectional study Subjects: 14 prosthesis users with a unilateral transfemoral amputation  (10 men, 4women; 4 Mech., 10 MPK), amputated due to trauma, congenital reasons, infection ortumor and used the same prosthetic knee for at least one year. Method: To study QoL in the  population concerned a questionnaire was carriedout, including the RAND-36 and supplementary questions. The  participants  were divided into two groups with regard to the knee component to enable the results to be analyzed. Results: No significant difference in QoL were found between the groups. The largest differences were observed in physical (Mech.: 0 MPK: 50) and emotional (Mech.: 41.75MPK: 100) role function. Conclusion: The result of the study showed no significant difference in QoL between the groups. Furthermore, specific measuring instruments targeting individuals with amputation should be used to investigate quality of life in the population concerned.

Abstract The repair of degenerative mitral valve regurgitation has been shown to be an effective procedure with durable results. The techniques for mitral valve repair are not completely risk-free for late failure, and the identification of factors associated with this increased risk is of clinical relevance as it permits an appropriate selection of patients for whom mitral valve surgery should be offered and by which technique. The European system for cardiac operative risk evaluation score (EuroSCORE) has been used and demonstrated worldwide to be a valid tool for the prediction of immediate postoperative outcome after coronary artery bypass surgery. There are only a few studies which examine its value in heart valve surgery. Mitral valve repair has been shown to be associated with significant improvement in terms of functional capacity, but the late quality of life in these patients has not been adequately assessed, and there is no data on the quality of life of long-term survivors. The study population consisted of two groups of patients operated on at our institution. The first group included 164 patients who underwent isolated or combined mitral valve repair for mitral valve regurgitation during the period 1993 to 2000, while the second group consisted of 207 patients who underwent mitral valve repair (164 patients) or replacement (43 patients) for isolated mitral valve regurgitation during the same time-period. The first study aimed to identify preoperative variables which may have impact on the 30-day postoperative outcome. In the second study, the long-term outcome after mitral valve repair was evaluated in order to identify the risk factors associated with late failures. The third study analyzed quality of life after valve repair and compared it to that of an age- and gender-adjusted Finnish general population. In the fourth study, the validity of EuroSCORE was tested in predicting the immediate and late outcome of patients who had undergone mitral valve repair or replacement for isolated valve regurgitation. Patient age, a history of prior cardiac surgery and NYHA functional class were independent predictors of poor outcome. A residual regurgitation grade of more than one immediately after primary repair and chronic pulmonary disease were independent predictors of mitral valve reoperation. After valve repair, quality of life was similar to the age- and sex-adjusted general Finnish population. Both additive and logistic EuroSCOREs were predictors of the immediate and late outcomes of patients after surgery for mitral valve regurgitation.

Bakgrund: Narkolepsi är en kronisk neurologisk sjukdom som påverkar hjärnans förmåga att reglera hormonet hypokretin, vars uppgift är att reglera aptit, sömn och vakenhet. Narkolepsi delas in i två typer, Typ 1 och Typ 2. Fysisk inaktivitet har påvisat öka besvären med överväldigande dagtrötthet och personer med narkolepsi är mindre fysiskt aktiva än friska personer.  Syfte: Undersöka och kartlägga hälsorelaterad livskvalitet och fysisk aktivitet hos en grupp individer med narkolepsi, jämföra åldersskillnader samt undersöka om det finns ett samband mellan dessa variabler.  Metod: Tvärsnittsstudie med icke-experimentell design. Individer från 16 år inkluderades i undersökningsgruppen (n=70). Deltagarna rekryterades via Narkolepsiföreningen genom en sluten Facebook-grupp och ett mejlutskick från deras kansli.  Resultat: Lägre dimensionspoäng inom samtliga dimensioner från RAND-36 kunde påvisas för deltagarna jämfört med normalpopulationen samt att majoriteten av deltagarna uppnår rekommendationerna för fysisk aktivitet per vecka. Signifikant skillnad mellan åldersgrupperna kunde enbart påvisas inom dimensionerna Rollfunktion (emotionell) och Psykiskt välbefinnande. Det fanns en signifikant positiv låg korrelation mellan rapporterade aktivitetsminuter och dimensionen Fysisk funktion.  Konklusion: Resultatet i undersökningen visar på trots att majoriteten av deltagarna uppnår rekommendationerna för fysisk aktivitet skattade de lågt för dimensioner kopplade till psykologiska och sociala aspekter. Det behövs således vidare forskning för att undersöka olika fysiska interventioners effekt på den hälsorelaterade livskvaliteten hos individer med narkolepsi. Resultatet visar även på att det finns ett behov av multimodalt bemötande med fokus på bio-psyko-sociala aspekterna. / Background: Narcolepsy is a chronic neurological illness that effects the brain’s capacity to produce the hypocretin hormone, whose function is to regulate appetite, sleep and alertness. Narcolepsy is divided into two groups, Type 1 and Type 2. Physical inactivity has shown to increase the symptoms of excessive daytime sleepiness and individuals with narcolepsy is less physically active than healthy individuals.  Purpose: To study and chart health-related quality of life and physical activity level in a group of individuals with narcolepsy, to compare age-differences and also to explore whether there is a correlation between these variables.  Method: Cross-sectional study with a non-experimental design. Participants from 16 years old were included in the sample group (n=70). The participants were recruited by Narkolepsiföreningen through a closed Facebook-group and through e-mail from their chancellery.  Results: A lower score within all dimensions could be shown for the participants and that the majority of the participants reach the recommendation for physical activity each week. A significantly difference between the age-groups was disclosed within the dimensions Social functioning and Mental health. There was a significant positive low correlation between reported physical activity levels and the dimension Physical function.  Conclusion: The results in this study show that even though the majority of the participants reach the recommendations for physical activity, the dimensions that were related to psychological and social aspects were low. Thus, further research is needed to study the effect of different physical interventions on the health-related quality of life in individuals with narcolepsy. The results also show that there is a need for a multimodal approach with focus on the biological, psychological and social aspects.

SAMMANFATTNING  MINOCA (Myocardial Infarction with Non Obstructive Coronary Arteries) är ett begrepp som beskriver en grupp av patienter som initialt uppvisar hjärtinfarktliknande symptom, men där patienternas kranskärl sedan visar sig vara normala. Det finns olika bakomliggande orsaker till detta tillstånd. I begreppet MINOCA ingår bland annat hjärtinfarkt, takotsubokardiomyopati och myokardit. Hos en del av patienterna förblir orsaken till sjukdomen oklar. Patienternas livskvalitet påverkas och fatigue kan ha en negativ inverkan på återhämtningen. Fatigue kan leda till en avsaknad av energi till att hantera vardagslivet, vilket kan påverka patienternas motivation till att orka genomföra olika sysslor och ge en sämre livskvalitet. Syftet med studien var att undersöka självskattad hälsorelaterad livskvalitet och fatigue hos patienter med hjärtinfarkt utan kranskärlsförträngningar vid insjuknandet och sex månader efter insjuknandet. Metoden för studien var kvantitativ, med en deduktiv ansats och en prospektiv icke-experimentell design. Datamaterialet hämtades från den pågående SMINC-2 studien. Till studien inkluderades 101 patienter genom ett bekvämlighetsurval, 74 kvinnor och 27 män. Datainsamlingen genomfördes med hjälp av enkäterna RAND-36, som mäter hälsorelaterad livskvalitet och MFI-20 (Multidimensional Fatigue Inventory). Dataanalysen genomfördes med hjälp av statistikprogrammet SPSS Statistics, version 23. Resultatet av mätningen med RAND-36 visade att det fanns en signifikant förbättring hos patienterna med MINOCA inom dimensionerna vitalitet/fatigue, social funktion, rollfunktion-emotionella orsaker och psykiskt välbefinnande sex månader efter insjuknandet. Inom de olika diagnosgrupperna så uppnådde patienterna med myokardit en signifikant förbättring i dimensionen vitalitet/fatigue. Patienterna med takotsubo uppnådde en signifikant förbättring inom dimensionerna vitalitet/fatigue, social funktion och psykiskt välbefinnande. Resultatet av MFI-20 visade att den sammansatta poängen för alla patienter med MINOCA hade förbättrats signifikant efter sex månader. De dimensioner där patienterna uppnådde en signifikant förbättring efter sex månader var generell fatigue och mental fatigue. Patienterna med osäker diagnos var den enda diagnosgruppen som uppnådde en signifikant förbättring och dimensionerna var mental fatigue och generell fatigue. Slutsatsen är att patienterna med MINOCA upplevde en försämrad generell hälsorelaterad livskvalitet och en ökad känsla av fatigue vid insjuknandet. Den samlade upplevelsen av livskvalitet och fatigue hade förbättrats sex månader efter insjuknandet, men var fortfarande negativt påverkad. Patienter med diagnosen takotsubo och de med osäker diagnos uppvisade en sämre livskvalitet och en ökad känsla av fatigue inom flest dimensioner, jämfört med patienterna med myokardit och de med hjärtinfarkt.

Bakgrund: Utöver hormonbaserade läkemedel har fysisk aktivitet visat effekt på klimakterierelaterade besvär men få studier har utförts om relationen mellan fysisk aktivitet, klimakteriebesvär och hälsorelaterad livskvalitet i en svensk population. Syfte: Syftet var att undersöka klimakteriebesvär, hälsorelaterad livskvalitet och fysisk aktivitetsnivå bland kvinnor i Sverige i klimakteriet samt att studera hur fysisk aktivitetsnivå relaterar till livskvalitet och klimakteriebesvär. Metod: Enkät med flervalsfrågor om klimakteriebesvär (Menopause Rating Scale), fysisk aktivitetsnivå (Socialstyrelsens screeningfrågor om fysisk aktivitet) och hälsorelaterad livskvalitet (RAND-36) skickades till två slutna Facebookgrupper för kvinnor i klimakteriet. Resultatsammanfattning: Enkätsvaren visade att kvinnorna (n=381) skattade sömn och fysisk/mental trötthet som de mest besvärande symtomen, var fysiskt aktiva i genomsnitt 315 minuter i veckan och hade lägst hälsorelaterad livskvalitet avseende energi/fatigue och högst hälsorelaterad livskvalitet avseende fysisk funktion. De som uppnådde rekommendationerna för fysisk aktivitet skattade både högre fysisk hälsa (p<0.001) och emotionell hälsa (p=0.004) jämfört med de som inte uppnådde rekommendationerna. Ett svagt men signifikant samband fanns mellan grad av klimakteriebesvär och totalt antal aktivitetsminuter (ρ=-0.156) respektive fysisk träning (ρ=-0.149). Konklusion: Resultaten tyder på en relation mellan tillräcklig fysisk aktivitet och högre hälsorelaterad livskvalitet, särskilt avseende dimensionerna fysisk och emotionell hälsa. Sambandet mellan klimakteriebesvär och fysisk aktivitet fanns men var svagt. Resultaten ger insikter i komplexa samband mellan klimakteriebesvär, fysisk aktivitet och hälsorelaterad livskvalitet men belyser betydelsen av fysisk aktivitet för denna grupp. / Background: Besides hormone-based treatments, physical activity has shown effectiveness in menopausal symptoms, but few studies have explored the relationship between physical activity, menopausal symptoms, and health related quality of life in a Swedish population. Objective: The objective was to examine menopausal symptoms, health related quality of life, and physical activity levels among menopausal women in Sweden, and to explore how physical activity levels correlates to health related quality of life, and menopausal symptoms. Method: A multiple-choice questionnaire about menopausal symptoms (Menopause Rating Scale), physical activity (Socialstyrelsens Screeningfrågor om Fysisk Aktivitet), and health related quality of life (RAND-36) was sent to two closed Facebook groups for menopausal women. Results: Survey responses from the women (n=381) reported sleep and physical/mental fatigue as the most severe symptoms. On average, they were physically active for 315 minutes per week and had the lowest heath related quality of life related to energy/fatigue and the highest heath related quality of life related to physical function. Those who met the recommendations for physical activity reported higher physical health (p<0.001) and emotional health (p=0.004) compared to those who did not meet the recommendations. A weak but significant relationship was found between the degree of menopausal symptoms and the total number of physical activity (ρ=-0.156) and physical exercise (ρ=-0.149). Conclusion: The results suggest a relationship between sufficient physical activity and higher health related quality of life, especially concerning the dimensions physical and emotional health. The association between menopausal symptoms and physical activity was present but weak. The findings provide insights into the complex relationships between menopausal symptoms, physical activity, and health related quality of life, highlighting the significance of physical activity for this group.

Objective  Paper I: Most screening and opportunistically detected abdominal aortic aneurysms (AAA) are small and kept under surveillance for several years before preventive surgery. Living with the diagnosis of an AAA may have an influence on the patient’s life. The aim was to review systematically review the current knowledge of the effect on health related quality of life (HRQoL) and patients’ experiences of living with an AAA while under surveillance. Paper II: To investigate HRQoL and comorbidity in men with screening detected AAA, Sub-Aneurysmal aorta (SAA) and Controls at baseline screening and after long-term follow-up. Methods  Paper I: A systematic literature review of quantitative and qualitative studies, which were quality assessed according to the GRADE system, was carried out. PubMed, Cochrane, Embase, CINAHL, PsycINFO, and MEDLINE were searched. Narrative synthesis and meta-analysis were performed and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Paper II: Between 2006 and 2015, 16 689 sixty-five-year old men participated in the aortic screening program in the county of Uppsala in Sweden. All 539 men diagnosed with an SAA or AAA were invited to participate in the study UpAAA and 324 accepted. Baseline questionnaires was distributed after screening, and at 5-year follow-up. For each year a control group of approx. 50 men, participating in the screening program with normal aorta, were included.  Results Paper I: Synthesis and meta-analyses of studies based on the Short Form-36 demonstrated that patients with an AAA consistently rated their general health lower than controls and conveyed no significant negative impact for patients with an AAA when assessed at follow up and compared with pre-screening. Analysis of HRQoL estimates of mental health, anxiety, and depression demonstrated no significant differences for patients with AAA compared with controls, or within the AAA group. Qualitative studies revealed that patients with an AAA felt safe being under surveillance and receiving a diagnosis of AAA set thoughts and feelings in motion regarding health, ageing, and mortality. Patients’ lack of knowledge about the disease, its progression, and future planning can cause insecurity and worries. Paper II: AAA and SAA group both has impairment in the physical dimensions of HRQOL and a higher prevalence of co-morbidity at baseline, compared to controls. At 5-year follow-up, the similarities between AAA and SAA group remained with no difference in HRQOL but a higher prevalence of CVD, hypertension and diabetes in men with AAA. Compared with controls both AAA and SAA had significantly higher impairment in HRQoL, and prevalence of co-morbidity and the AAA group was most affected.