Introduktion: Levercirros är ett medicinskt tillstånd i slutskedet som är en följd av en leversjukdom och orsakas bland annat av missbruk av alkohol, kronisk hepatit B och C, och autoimmun hepatit. Enligt rapport från Världshälsoorganisationen lider cirka 10% av befolkningen i världen av kroniska leversjukdomar, och 20 miljoner människor drabbas av levercirros eller dess följd levercancer. Den registrerade mortaliteten av levercirros i Sverige är ca 600 personer per år. För många av dessa patienter innebär det ett stort lidande både fysiskt och psykiskt. Patienterna upplever inte alltid att deras lidande har kunnat lindras, och därför är det angeläget att kunskaper om och förståelse för denna patientgrupp utifrån deras egna upplevelser förbättras och fördjupas.   Syfte: Att beskriva patienters upplevelser av att leva med levercirros och deras självskattning av sin livskvalitet.   Metod: Litteraturöversikt med en systematisk ansats baserad på sex kvalitativa och nio kvantitativa originalartiklar publicerade på engelska under åren mellan 2003 och 2020.    Resultat: Resultatet innefattar tre huvudteman: fysiskt lidande, psykologiskt lidande, och försämrad hälsorelaterad livskvalité. Individer med levercirros upplever rent generellt ett lidande, dock på olika plan samt grader. Ett fysiskt lidande förekommer men även ett psykiskt, och ofta leder det till en försämrad livskvalité.   Slutsats: Forskning har visat att patienter med levercirros möjligen inte kan uttrycka sina åsikter på samma sätt som andra patienter på grund av stigmatisering och skam. Denna litteraturstudie kommer att hjälpa såväl närstående som vårdpersonal att förstå denna patientgrupp, och minska deras lidande på ett adekvat sätt. / Introduction: Liver cirrhosis is a medical condition in the final stages that is a consequence of a liver disease and is caused by, among other things, alcohol abuse, chronic hepatitis B and C, and autoimmune hepatitis. According to a report from the World Health Organization, about 10% of the world's population suffers from chronic liver disease, and 20 million people suffer from liver cirrhosis or its consequent liver cancer. The registered mortality from liver cirrhosis in Sweden is about 600 people per year. For many of these patients, it means great suffering both physically and mentally. Patients do not always feel that their suffering has been alleviated, and therefore it is important that knowledge of and understanding of this patient group based on their own experiences is improved and deepened.   Aim: To describe patients' experiences of living with liver cirrhosis and their self-esteem of their quality of life.   Method: Literature review with a systematic approach based on six qualitative and nine quantitative original articles published in English during the years between 2003 and 2020.   Results: The results include three main themes: physical suffering, psychological suffering, and deteriorating health-related quality of life. Individuals with liver cirrhosis generally experience suffering, however, on different levels and degrees. A physical suffering occurs but also a mental one, and often it leads to a deteriorating quality of life.   Conclusion: Research has shown that patients with liver cirrhosis may not be able to express their views in the same way as other patients due to stigma and shame. This literature review will help both relatives and caregivers understand this patient group, and reduce their suffering adequately.

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.

Bakgrund Bäckenbottendysfunktion (BBD) är vanligt hos personer som genomgått förlossning, och kan påverka den hälsorelaterade livskvaliteten. Fysioterapeutisk behandling av BBD kan både symptomlindra och förbättra den hälsorelaterade livskvaliteten (HRQoL). Syfte Att beskriva hur personer 1-5 år postpartum skattar sina bäckenbottenbesvär och sin hälsorelaterade livskvalitet, samt att utreda sambandet mellan BBD och HRQoL. Att utreda hur många av deltagarna som fått behandling av fysioterapeut. Metod I tvärsnittsstudien deltog 205 personer med bäckenbottendysfunktion (medelålder 33,56 år, SD=±4,7). En webbenkät publicerades på fyra Facebooksidor. För korrelationerna användes icke-parametrisk statistik och beräknades med Spearmans korrelationskoefficient. Resultat Medianvärdet för deltagarnas skattade BBD med PFDI-20 var 95. Högst skattat av deltagarnas HRQoL mätt med RAND-36 var delskalan fysisk funktion med medianvärde 80, lägst var vitalitet med 35. Korrelationerna mellan BBD och olika delar av HRQoL varierade mellan delskalan smärta (r= -0,550) som högst, emotionell rollfunktion (r= -0,358) som lägst, och alla korrelationer hade p<0.001. Starkast negativ korrelation mellan sexuell dysfunktion och HRQoL hittades inom dimensionen fysisk funktion (r= -0,517), och svagast för vitalitet (r=-0,235). Samtliga korrelationer hade p<0,001. Av samtliga deltagare har 40% träffat fysioterapeut/sjukgymnast. Konklusion Deltagarna skattade sin BBD högre än en normalpopulation. Studien påvisar en negativ korrelation både mellan BBD mätt med PFDI-20, en egenformulerad fråga om sexuell dysfunktion och skattad HRQoL mätt med RAND-36. Trots upplevd BBD har enbart hälften av deltagarna fått vård för sina besvär. / Background Pelvic floor dysfunction (BBD) is common among people post partum, and it can affect the health-related quality of life (HRQoL). Physiotherapy for the pelvic floor can both ease symptoms and improve HRQoL. Purpose To describe how people 1-5 years postpartum estimate their BBD and their HRQoL, and to investigate the correlation between BBD and HRQoL. To investigate how many of the participants that have received treatment from a physiotherapist. Method In this cross-sectional study 205 people with BBD participated (mean age 33.56 years, SD=± 4.7). A web survey was published on four Facebook pages. Non-parametric statistics were used, and calculated with Spearman's correlation coefficient. Results The median value for the participants' estimated BBD with PFDI-20 was 95. The highest of the participants' HRQoL measured with RAND-36 was the subscale physical function with a median value of 80 and the lowest was vitality with 35. The correlations between BBD and the various subscales for HRQoL varied between pain (r = -0.550) as the highest, and emotional role function (r = -0.358) as the lowest, and all correlations had p <0.001. The strongest negative correlation between sexual dysfunction and HRQoL was physical function (r = -0.517), and the weakest was vitality (r = -0.235). All correlations had p <0.001. Of all participants, 40% have seen a physiotherapist. Conclusion The participants rated their BBD higher than an average population. The study shows a negative correlation between BBD measured with PFDI-20, a question about sexual dysfunction and estimated HRQoL measured with RAND-36. Despite perceived BBD, only half of the participants have received care for their problems.

No description available.

Objective: To quantitatively characterize change in health-related quality of life (HRQoL) in the context of behavioral (n = 16), surgical (n = 5), and pharmacological (n = 1) interventions for pediatric overweight and obesity. A secondary goal was to examine the relationship between change in HRQoL and change in body mass index (ΔBMI) by treatment type. The amount of weight loss necessary to observe a minimally clinically important difference (MCID) in HRQoL was determined. Method: Data were gathered from studies reporting on weight change and ΔHRQoL over the course of obesity interventions (N = 22) in youths (N = 1,332) with average ages between 7.4 and 16.5 years (M = 12.2). An overall effect size was calculated for ΔHRQoL. Moderation analyses were conducted using analysis of variance and weighted regression. MCID analyses were conducted by converting HRQoL data to standard error of measurement units. Results: The overall effect size for ΔHRQoL in the context of pediatric obesity interventions was medium (g = 0.51). A significant linear relationship was detected between ΔBMI and ΔHRQoL (R2 = 0.87). This relationship was moderated by treatment type, with medical (i.e., surgical) interventions demonstrating a stronger relationship. Results indicated that it takes a change of 0.998 BMI units to detect true change in HRQoL. Conclusion: This study provides the first known quantitative examination of changes in HRQoL associated with weight loss in pediatric interventions. Medical interventions appear to offer a more substantial increase in HRQoL per unit of BMI change. These results offer a concrete weight loss goal for noticing positive effects in daily life activities.

No description available.

Problem-solving deficits and poor health–related quality of life are associated with suicide risk; yet, little is known about the interrelations between these variables. In 220 primary care patients, we examined the potential mediating role of physical and mental health–related quality of life on the relation between social problem–solving ability and suicidal behavior. Participants completed the Suicidal Behaviors Questionnaire-Revised, Social Problem Solving Inventory-Revised, and Short-Form 36 Health Survey. Utilizing bootstrapped mediation, our hypotheses were partially supported; mediating effects were found for mental health–related quality of life on the relation between social problem-solving and suicidal behavior. Physical health–related quality of life was not a significant mediator. Greater social problem–solving ability is associated with better mental health–related quality of life and, in turn, to less suicidal behavior. Interventions promoting social problem–solving ability may increase quality of life and reduce suicide risk in primary care patients.

Background: Progressive respiratory muscle weakness and ineffective cough contributes to pulmonary morbidity and mortality in children with neuromuscular disease. Inspiratory muscle training aims to preserve or improve respiratory muscle strength, reduce respiratory complications and improve health-related quality of life. Objectives: To describe South African physiotherapists' knowledge and respiratory management strategies and determine the safety, viability, acceptability and efficacy of inspiratory muscle training for children 5-18 years with neuromuscular disease. Methods: Four studies were conducted: i) a quantitative descriptive survey; ii) a systematic review using Cochrane methodology; iii) a prospective, pre-experimental observational study and iv) a prospective, cross-over randomised controlled trial using a standardised 12-week inspiratory muscle training intervention. Results: i) South African physiotherapists (n=64) reported being aware of international clinical practice recommendations, however they favoured manual airway clearance techniques. The use of inspiratory muscle training in chronic management was well supported by South African physiotherapists. ii) Results of the systematic review (seven included studies; n=168) suggested that inspiratory muscle training may be effective in improving inspiratory muscle strength. There was insufficient evidence for an effect on patient morbidity or health-related quality of life. iii) The pre-experimental, pilot study (n=8) suggested that a six-week inspiratory muscle training programme was safe, viable, acceptable and associated with a significant increase in inspiratory muscle strength. iv) The cross-over randomised controlled trial (n=23) did not show evidence of a difference in the primary outcome measures (number of hospitalisations and respiratory tract infections) between intervention and control periods. There were no adverse events related to inspiratory muscle training. Inspiratory muscle strength (Pimax) and peak expiratory cough flow increased by 14.57 (±15.67)cmH2O and 32.27 (±36.60)L/min respectively during the intervention period compared to a change of 3.04 (±11.93)cmH2O (p=0.01) and -16.59 (±48.29)L/min (p=0.0005) during the control period. There was no evidence of change in spirometry, functional ability or total health-related quality of life scores following the intervention. Overall participant satisfaction with inspiratory muscle training was high and adherence was good. Conclusions: Inspiratory muscle training in children with neuromuscular disease is well tolerated, appears to be safe and is associated with significant improvements in inspiratory muscle strength and cough efficacy.

Bakgrund: Hypotyreos är en av världens vanligaste sjukdomar som drabbar cirka tio procent av befolkningen. Sjukdomen har i Sverige fördubblats från 2006 till 2017 framförallt bland kvinnor mellan 20−40 år. Hypotyreos är en endokrin, kronisk sjukdom som innebär minskad produktion av tyreoideahormoner vilket påverkar kroppens normala funktioner och utan behandling kan det leda till andra kroniska sjukdomstillstånd. Personer med hypotyreos kan dock oberoende av behandling känna ihållande symtom som påverkar deras hälsa. Syfte: Studiens syfte var att beskriva vad som påverkar livskvaliteten hos personer med hypotyreos. Metod: En allmän litteraturstudie utfördes genom att granska och analysera tio artiklar som relaterade till syftet. Resultatet från artiklarna sammanställdes till fyra kategorier vilka belyste faktorer som påverkade livskvaliteten hos personer med hypotyreos. Resultat: Att leva med hypotyreos innebär en påverkan på livskvaliteten för många personer då de har kvarstående symtom trots behandling. Resultatet visade att trötthet, övervikt och viktuppgång, psykisk ohälsa och behandlingen var faktorer som bidrog till en försämrad livskvalitet. Konklusion/Implikation: Forskning kring livskvalitet hos personer med hypotyreos bör vidareutvecklas för att öka sjuksköterskans kunskap om sjukdomen och bidra till en utveckling av omvårdnaden. / Background: Hypothyroidism is one of the most common diseases in the world, affecting about ten percent of the population. The disease has doubled in Sweden from 2006 to 2017, especially among women between the ages of 20−40 years. Hypothyroidism is an endocrine, chronic disease which means reduced production of thyroid hormones which affects the body's normal functions and without treatment it can lead to other chronic disease states. However, people with hypothyroidism, regardless of treatment, can feel persistent symptoms that affect their health. Aim: The aim of the study was to describe what affects the quality of life of people with hypothyroidism. Method: A general literature study was conducted by reviewing and analyzing ten articles related to the purpose. The results from the articles were compiled into four categories which highlighted factors that affected the quality of life of people with hypothyroidism. Results: Living with hypothyroidism has an impact on the quality of life for many people as they have persistent symptoms despite treatment. The results showed that fatigue, overweight and weight gain, mental illness and treatment were factors that contributed to a reduced quality of life. Conclusion/Implication: Research on quality of life in people with hypothyroidism should be further developed to increase the nurse's knowledge of the disease and contribute to the development of nursing.

Background and Aims: There is an increasing awareness that, in order to monitor health outcomes both mortality and morbidity need to be assessed. A common metric used to measure morbidity and functional limitation is the quality adjusted life year or QALY, which incorporates time spent in a health condition and Health-Related Quality of Life (HRQoL) into the measure. This is of increasing importance in Low Income Countries (LIC) where programmes have been adopted and implemented to address the high burden of child mortality. The ‘first 1000 days’ is one such initiative which has been adopted by the WHO to improve nutritional support, health care and social support for both the mother and child. One of the aims is to improve quality of life during this vulnerable period. As there is currently no appropriate measure of HRQoL in this age group, we set out to develop a valid and reliable, HRQoL instrument for children from 1 month to 3 years old, amenable to the elicitation of preference weights. Methods: The new HRQoL instrument, HRQoL-6D-IT, was based firstly on a mapping review of HRQoL measures for children. The next stage involved eliciting options through cognitive review from caregivers of very young children regarding HRQoL dimensions included in the EQ-5D-Y an existing validated HRQoL measure for older children. The care-givers were requested to identify items to be considered for inclusion, the wording and layout of the new measure. The item pool generated from the literature reviews and cognitive interviews were then assessed through a Delphi study with experts in the field. These items were further reduced through subsequent testing of items and retesting of a preliminary measure. The final items on the HRQoL-6D-IT included: movement, play, pain, relationships, communication and eating and, apart from pain, the descriptors referenced the behaviour of the child to age appropriate behaviour. The HRQoL-6D-IT was then tested for validity and reliability in a group of acutely-ill (AI), chronically-ill (CI) and typically developing (TD) children in two provinces in South Africa: Western and Eastern Cape. Results: The methodology used to identify candidate items was rigorous and yielded items which were developed to be observable with dimension descriptors referring to ‘age appropriate behaviour’. Caregivers were able to reliably report on HRQoL of their very young children from age 1-36 months. The content validity had been established during the development of the instrument. Concurrent validity of the different items (dimensions) was tested between the HRQoL-6D-IT and relevant items from the ASQ, FLACC and NIPS pain scale and Diet History.