Att mäta patienters HRQoL (Health Related Quality of Life) är en viktig utvecklingslinje inom vård och vårdforskning. Medicinsk resultatmätning bör kompletteras med nya dimensioner för att kunna utvärdera patientens samlade nytta av behandling och vårdåtgärder. Mätningar är särskilt viktiga när det gäller kroniska sjukdomstillstånd. Syftet med denna studie var att undersöka erfarenheterna av SF 36 (Short Form (36) Health Survey) på enheter som deltog i Skåneprojektet. Metoden var en enkätundersökning med kvalitativ ansats. 18 enkäter skickades ut till de nio enheter som deltog. I vår undersökning framkom att uppfattningarna varierade om instrumentets nytta, från mycket användbart till ingen nytta alls. Flera svar visade att sjuksköterskorna blivit uppmärksammade på hur patienten verkligen upplevde sin situation och hur olika personal och patient bedömer HRQoL. Framgångsfaktor var eldsjälar. Intresse från läkare och patienter påverkade i vilken utsträckning resultaten användes. Flera kunde se betydelsen av att fråga patienten om HRQoL, däremot fanns det osäkerhet om hur resultaten skulle följas upp och användas och en del upplevde att det tog mycket tid. / Measuring patients' HRQoL (Health Related Quality of Life) is an important line of development in the health care and research. Medical outcome measurements should be supplemented by new dimensions to evaluate the patient's overall benefit of treatment and care measures. Measurements are particularly important in chronic disease states. The purpose of this study was to examine the experiences of the SF 36 (Short Form (36) Health Survey) on the units that participated in the Skåne project. The method was a survey with a qualitative approach. 18 questionnaires were sent to the nine units that participated. Our study revealed that perceptions varied on the instrument's utility, from very useful for nothing at all. Several responses showed that nurses have been made aware of how the patient actually experienced their situation and how different staff and patient assess HRQoL. Success factor was enthusiasts. Interest from doctors and patients affect the extent to which the results were used. Many could see the importance of the issue of patient HRQoL, however, there was uncertainty about how the results would be monitored and used, and some felt that it took much time.

Yes / Loneliness in older people is associated with poor health-related quality of life (HRQoL). We undertook a parallel-group randomised controlled trial to evaluate the effectiveness and cost-effectiveness of telephone befriending for the maintenance of HRQoL in older people. An internal pilot tested the feasibility of the trial and intervention. Methods: Participants aged >74 years, with good cognitive function, living independently in one UK city were recruited through general practices and other sources, then randomised to: (1) 6 weeks of short one-to-one telephone calls, followed by 12 weeks of group telephone calls with up to six participants, led by a trained volunteer facilitator; or (2) a control group. The main trial required the recruitment of 248 participants in a 1-year accrual window, of whom 124 were to receive telephone befriending. The pilot specified three success criteria which had to be met in order to progress the main trial to completion: recruitment of 68 participants in 95 days; retention of 80% participants at 6 months; successful delivery of telephone befriending by local franchise of national charity. The primary clinical outcome was the Short Form (36) Health Instrument (SF-36) Mental Health (MH) dimension score collected by telephone 6 months following randomisation. Results: We informed 9,579 older people about the study. Seventy consenting participants were randomised to the pilot in 95 days, with 56 (80%) providing valid primary outcome data (26 intervention, 30 control). Twenty-four participants randomly allocated to the research arm actually received telephone befriending due to poor recruitment and retention of volunteer facilitators. The trial was closed early as a result. The mean 6-month SF-36 MH scores were 78 (SD 18) and 71 (SD 21) for the intervention and control groups, respectively (mean difference, 7; 95% CI, −3 to 16). Conclusions: Recruitment and retention of participants to a definitive trial with a recruitment window of 1 year is feasible. For the voluntary sector to recruit sufficient volunteers to match demand for telephone befriending created by trial recruitment would require the study to be run in more than one major population centre, and/or involve dedicated management of volunteers. Trial registration: ISRCTN28645428.

Syftet med litteraturstudien var att undersöka hur livskvaliteten upplevs hos äldre personer över 65 år med diabetes typ 2. Metoden var en beskrivande litteraturstudie. Totalt granskades 14 artiklar. Datasökningen genomfördes i Pub Med och sökorden som användes var type 2 diabetes, quality of life, health-related quality of life och HRQoL. Tre områden identifierades: fysisk, psykisk och social påverkan på livskvaliteten. Resultatet i föreliggande litteraturstudie visade att ju fler komplikationer i kombination med sin diabetes den äldre personen har, desto sämre upplevs livskvaliteten. Insulinbehandling visade sig påverka äldre personer med diabetes typ 2 och deras livskvalitet negativt, däremot visade studier att om den äldre personen själv får sköta sina insulininjektioner samt blodsockerkontroller påverkas livskvaliteten positivt. Föreliggande litteraturstudies resultat visade även att personer som får undervisning om sin diabetes och sin egenvård upplever en högre livskvalitet. Andra faktorer som påverkade upplevd livskvalitet var sociodemografiska faktorer som kön, ålder, utbildning och inkomst. Slutsatsen av denna litteraturstudie är att information och utbildning till personer med diabetes typ 2, gällande sjukdomen och dess komplikationer, leder till att de upplever högre livskvalitet. / The aim of this study was to examine how quality of life was experienced by older people over the age of 65 with diabetes type 2. The method was a descriptive literature review. In total, 14 articles were reviewed. Articles were retrieved from PubMed and keywords used was type 2 diabetes, quality of life, health-related quality of life and the short form HRQoL.Three main categories were identified: physical, psychological and social impact on the quality of life. The result of this literature study showed that the more complications in combination with their diabetes the older person has, the worse the perceived health-related quality of life. Insulin treatment was found to affect older people with type 2 diabetes and their quality of life negatively, however, studies showed that if the older person can manage their insulin injections and their blood sugar monitoring affected the quality of life positively.The present literature study also showed that people who receive education about their diabetes and their self-care experience a higher quality of life. Other factors that affect the quality of life are the socio-demographic factors such as gender, age, education and income. The conclusion from this literature study shows that information and education to people with diabetes type 2, regarding the disease and its complications affects the quality of life positively.

Bakgrund: Syftet med palliativ omvårdnad är att främja hälsorelaterad livskvalitet (HRQoL) för personer som vårdas och att ge stöd till anhöriga.  För att kunna erbjuda god palliativ omvårdnad i öppenvård, slutenvård eller hemsjukvård krävs att sjuksköterskan har en förståelse för hur personer i palliativt skede skattar sin HRQoL. Syfte: Syftet var att beskriva faktorer som påverkar HRQoL för personer i palliativt skede. Metod: Litteraturöversikt av 14 vetenskapliga artiklar med kvantitativ design. Sökningen har skett i databaserna CINAHL och Pub Med. Analys har skett med hjälp av Fribergs trestegsanalys. Resultat: Resultatet visar att flera faktorer samverkar i personers självskattning av HRQoL. Faktorerna sammanfattas i tre beskrivningskategorier; symtombörda (social och emotionell påverkan, sista tiden i livet), vårdens påverkan (tidigt insättande av palliativ vård) och behandling (positiv, negativ) på HRQoL. Slutsats: För att sjuksköterskan ska kunna stödja personer som vårdas i palliativt skede, och de anhöriga, att kunna uppleva god HRQoL behöver sjuksköterskan kunskap om vilka faktorer som påverkar HRQoL för den de vårdar. Examensarbetet kan ge sjuksköterskan fördjupad förståelse för faktorer som påverkar HRQoL för personer som vårdas i palliativt skede och därmed möjliggöra förbättrat personcentrerat omhändertagande 0ch främja upplevd HRQOL. Nyckelord: Hälsorelaterad livskvalitet (HRQoL), kvantitativ, palliativ vård och vuxna. / Factors that affect health-related quality of life for people in palliative phase – a literature review Background: The purpose of palliative care is to promote health-related quality of life (HRQoL) of the person as well as providing support for relatives. In order to provide good palliative care in day care centers, inpatient units or home care it is vital that the nurse understands how people in the palliative phase values and self-reports their HRQoL. Aim: The purpose was to describe factors that affect HRQoL for people in palliative phase. Method: Literature review of 14 scientific articles with quantitative design. The search has been conducted in the databases CINAHL and Pub Med. The analysis was implemented using Friberg’s three-step analysis model.    Result: The results show that several factors interact in people’s self-assessment of HRQoL. The factors are summarized in three descriptive categories; the impact on HRQoL from symptom burden (symptoms; social and emotional impact; end of life), care (access to; early access) and treatment (positive impact; negative impact) respectively. Conclusion: In order for the nurse to be able to promote the experience of good quality of life for people in palliative phase, and their relatives, knowledge is vital about which factors affect the quality of life for the person they care for. The degree project can provide the nurse with an immersed understanding of theese factors and thus enable improved person-centered care and promote the perceived HRQoL. Keywords: Health-related quality of life (HRQoL), quantitative, palliative care and adults.

This dissertation concerning the theme "A comparison of the Contact and HRQOL concept in clients of nursing/old people´s homes" consists of a theoretical and practical part. The theoretical part firstly defines in detail the concept of the quality of life and the quality of life related to health (HRQoL ? health related quality of life). It also describes various methods of its evaluation. The next charter deals with the problems of aging and changes which arise with increasing age and are associated with a deteriorating health condition, as well as with situations and circumstances which may reset in a chase in the perception of the quality of life. The dissertation takes a closer look at the stay of elderly in some institutions for the elderly. The theoretical part compares the results obtained from elderly clients in an old people?s home using standardised SF-36 and Contact questionnaires. The SF-36 questionnaire is designed to measure the quality of life related to health and the Contact questionnaire serves to ascertain the frequency of contact between family and friends ant he elderly client. Data from both questionnaires were evaluated statistically and drawn up in the form of tables and graphs. This research showed a reduced perception of the quality of life of clients living in old people?s homes compared with the standard European population. In most domains of the quality of life there was no significant difference between clients with various frequency of contact with family and friends, and no difference was found n the evaluation of the quality of life between men and women.

Quality of life and chronic diseases are globally debated topics with different definitions, where even the professional community struggles to define them. This paper attempts to provide definitions of these concepts and to relate them to the disease of CF. This very rare disease severely limits the functioning of the patient and the whole family. The empirical part targets the population of outpatients and inpatients with CF. Using a generic and a specific questionnaire, it tries to map the quality of life of the individuals concerned and to compare some psychometric qualities of both questionnaires. Data collection was performed on a sample of 34 individuals and the results show a satisfactory quality of life and better qualities of the specific CFQ-R 14+ questionnaire. In conclusion, the interaction between professionals, patients and their loved ones is very important to maintain the best quality of life in adolescents with CF.

Bakgrund: Fetma är ett allvarligt folkhälsoproblem då fetma ökar risken att drabbas av följdsjukdomar, samt att patienter med fetma visat sig ha lägre genomsnittlig hälsorelaterad livskvalitet (HRQoL) jämfört med befolkningen i allmänhet. Syfte: med denna litteraturöversikt var att beskriva hälsorelaterad livskvalitet bland personer som genomgått fetmakirurgi. Metod: Litteraturöversikt baserad på 8 kvantitativa interventionsstudier med uppföljningar mellan 9 månader - 10 år efter genomförd behandling. Litteratursökning skedde i databaserna PubMed och Cinahl. Analys av studierna skedde genom att studierna sammanställdes baserat på redovisning av frågeformulär SF-36 för index fysisk och mental hälsa och dess åtta dimensioner. Resultat: Samtliga studier indikerar att den fysiska hälsan i genomsnitt ökar efter fetmakirurgi. Samtliga utom en studie indikerar att hälsoindex för mental hälsa i genomsnitt ökar efter fetmakirurgi. Studier som sträcker sig över flera uppföljningsperioder visar att den initiala ökningen av hälsoindex minskar med tiden och effekten är som högst 1–2 år efter fetmakirurgi. Konklusion: Resultaten pekar på att fetmakirurgi initialt leder till en förbättring av fysisk och mental HRQoL med en tydlig topp efter 1–2 år. Studier med högt deltagande och uppföljning över tid är för få för att dra slutsatser kring effekten av fetmakirurgi på HRQoL på längre sikt. Utbildning av vårdpersonal och uppföljningsprogram kan bidra till ökat uppföljningsdeltagande, och minska risken för bortfall till följd av brister i vårdpersonalens bemötande. / Background: Obesity is a serious public health problem as it increases the risk of secondary diseases. Patients with obesity have been shown to have lower average health-related quality of life (HRQoL) compared to the general population. Aim: of this literature review was to describe health-related quality of life among people who have undergone bariatric surgery. Methods: Literature review of eight quantitative intervention studies with follow-ups between 9 months to 10 years. Literature search took place in the databases PuBMed and Cinahl. Analysis of the studies was done by summarizing the studies based on the reported result of the SF-36 questionnaire for physical and mental health and its eight dimensions. Results: All studies indicate that physical health increases on average after bariatric surgery. All but one study indicate that the mental health index increases, on average, after bariatric surgery. Studies that extend over several follow-up periods show that the initial increase in mental health decreases over time and the effect is highest 1–2 years after bariatric surgery. Conclusion: The results indicate that bariatric surgery initially leads to an improvement in physical and mental HRQoL with a clear peak after 1–2 years. Studies with high participation and follow-up over time are too few to draw conclusions about the effect of bariatric surgery on HRQoL in the longer term. Training of healthcare professionals and follow-up programs can contribute to increased follow-up participation, and reduce the risk of non-response.

Background: As psychosis is often a lifelong disorder, improved health-related quality of life (HRQoL) can be a relevant treatment goal. Persons with psychosis have significantly reduced physical health. Research has demonstrated a great excess of mortality due to cardiovascular diseases, as psychosis may lead to an inactive lifestyle and difficulties making healthy lifestyle choices. Metabolic side effects of second-generation antipsychotics are also common. Many are therefore affected by the metabolic syndrome. The overall situation calls for action by developing health promotion interventions suitable for this group. In recent years, there has been an increased interest in the physical health of persons with psychosis. However, efforts have not been optimally tailored to the needs of this group, and health care services have not done enough, despite being aware of the problem. Aim: The general aim of this thesis was to study HRQoL, and metabolic risk factors in persons with psychosis, and by a health promotion intervention and through the participants’ own perspective contribute to an improvement in lifestyle interventions. Methods: Study 1 had a cross-sectional cohort study design that was carried out in specialised psychiatric outpatient departments in Sweden. The patients (n=903) were diagnosed with a psychotic disorder and invited consecutively to participate. A prospective population-based study of public health in the south-east of Sweden (n=7238) served as reference group. Patients were assessed using psychiatric questionnaires, including the Global Assessment of Functioning (GAF). Health-related quality of life was assessed using the EQ5D, both for patients and the population. Several other health status outcomes relevant to the metabolic syndrome were measured, together with lifestyle habits and clinical characteristics. Study II, III and IV were based on a lifestyle intervention for persons with psychosis. Study II was a longitudinal intervention study with a matched reference sample. The purpose of the lifestyle intervention  was to promote a healthier lifestyle by combining theoretical education with physical activities. The intervention group consisted of 42 participants. A matching procedure was made in which two individuals per participant were matched (n=84) into a reference group. The reference sample was matched for sex, BMI class, and being of as similar an age as possible. Socio-demographics were collected and metabolic risk factors relevant to the metabolic syndrome were measured. Symptom severity was measured using Clinical Global Impression (CGI), and HRQoL was assessed using EQ5D. Measurements were made at baseline and at a one-year follow-up. In study III, a qualitative exploratory study was conducted in order to explore prerequisites for a healthy lifestyle. Data were collected through individual interviews (n=40), using a semi-structured interview guide with participants who had undergone the lifestyle intervention. Data were collected 6–7 months after the intervention had been completed. Conventional content analysis was used. Study IV was also based on these 40 interviews and aimed to describe how persons with psychosis perceive participation in a lifestyle intervention. A phenomenographic analysis approach was used. Results/conclusions: Persons with psychosis are at great additional risk of physical comorbidity. Almost half of the patients met the criteria for metabolic syndrome. In addition, persons with psychosis had significantly lower HRQoL in all dimensions in the EQ5D, except for the pain/discomfort dimension. The only risk factor included in the metabolic syndrome that was associated with lower HRQoL was elevated blood pressure. Raised LDL-cholesterol was also related to lower HRQoL, together with low GAF, older age, high BMI, and female gender. The intervention study demonstrated that HRQoL was significantly improved in the intervention group when comparing EQ-VAS at baseline and at the one-year follow-up. It can be concluded that our intervention was not powerful enough to influence the metabolic factors to any greater extent. The key prerequisite for a healthy lifestyle seemed to be a wish to take part in the society and a longing to live like everybody else. However, many became stuck in a constant state of planning instead of taking action towards achieving a healthy lifestyle. Support by health care professionals is therefore also a prerequisite for a healthy lifestyle. This support should target the transition from thought to action and facilitate the participants’ ability to mirror themselves against healthy people in society by introducing activities they perceive that “common people” do. The challenge for health care professionals is to find a moderate intervention level that does not underestimate or overestimate the person’s capacity. This can facilitate continued participation, and participants can thereby find new social contacts and achieve health benefits.

Fundamentação e Objetivo: A epilepsia é a doença neurológica mais comum em crianças. A avaliação da qualidade de vida destas crianças é importante para otimizar o tratamento delas. É importante para obter os pontos de vista das próprias crianças e seus pais. No entanto, existem poucos instrumentos que avaliem a qualidade de vida através da visão das crianças e dos seus pais. O objetivo deste estudo foi desenvolver e validar uma nova ferramenta para avaliação da qualidade de vida em crianças com epilepsia através de seus pais e dos pacientes. Material e Métodos: Baseada no trabalho anterior de Arunkumar e colaboradores, foi elaborada uma escala de múltipla escolha com 20 questões independentes para as crianças e seus pais: A Quality-of-Life in Pediatric Epilepsy Scale (QLPES). A análise fatorial com rotação VARIMAX foi usada para identificar possíveis áreas para as 20 questões propostas e alfa de Cronbach foi utilizado para testar a consistência das escalas. As respostas dadas pelos pacientes e seus pais ou cuidadores foram correlacionadas com frequência e gravidade das crises e com outras variáveis relacionadas com a epilepsia. Resultados: No total, 171 pacientes e seus pais participaram deste estudo. Setenta e quatro pacientes (43,3%) eram do sexo feminino, com médias de 13,3 (DP = 3,0) anos de idade e de 5,1 (DP = 3,1) anos de escolaridade. O alfa de Cronbach para cada domínio isolado sugerido pela analise fatorial foi abaixo de 0,7 para cada grupo. Entretanto, o alfa de Cronbach para todas as perguntas na escala dos pais foi de 0,83, e de 0,74 para as crianças. Para os pais ou cuidadores, as pontuações do QLPES foram menores para as mães/cuidadoras, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para crianças com mais tempo de epilepsia, com maior duração de crises, ou aquelas com maior número de crises. Para as crianças, a pontuação QLPES foi menor para pacientes do sexo feminino, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para aquelas com maior frequência de crises, e para crianças com EEG normal. Conclusão: A QLPES apresenta validade interna, consistência interna, confiabilidade teste-reteste e boa sensibilidade. A QLPES é um instrumento útil, preciso, rápido e fácil de usar, que reflete adequadamente a forma como a epilepsia afeta a qualidade de vida de crianças/adolescentes, assim como ele reflete como a epilepsia pediátrica afeta a qualidade de vida dos pacientes na perspectiva de seus pais ou cuidadores. / Background and Purpose: Epilepsy is the most common neurological condition in children. The evaluation of the quality of life of these children is important to optimize the treatment of them. It is important to obtain the views of the children themselves and of their parents. However, there are few scales assessing quality of life through both. The purpose of this study was to develop and validate a new parent- and patient- tool for evaluating health-related quality-of-life in pediatric epilepsy. Design and Methods: Based on previous work of Arunkumar and colleagues, we created a multiple choice scale with 20 independent questions for children and their parents. The Quality-of-Life in Pediatric Epilepsy Scale (QLPES). Factor analysis with VARIMAX rotation was used to identify possible areas for the 20 proposed questions, and Cronbach's alpha was used to test the scale’s consistency. The answers given by patients and their parents or caregivers were correlated with frequency and severity of the seizures and with other epilepsy-related variables. Results: A total of 171 patients and their parents participated in this study. Seventy four (43.3%) patients were female, with mean of 13.3 (SD=3.0) years of age and 5.1 (SD=3.1) years of schooling. The Cronbach's alpha of isolated domains suggested by the factor analysis were less than 0.7 for each group. However, alpha Cronbach for all the questions in the parents’ scale was 0.83 and 0.74 for children. For parents or caregivers, QLPES scores were lower for females responders, for children using two or more antiepileptic drugs, for children with longer time of epilepsy, longer seizure duration, or those with higher number of seizures. For children, QLPES scores were lower for female patients, for children using two or more antiepileptic drugs, for those with higher frequency of seizures, and for children with normal EEG. Conclusion: QLPES exhibits internal validity, internal consistency, test–retest reliability, and good sensitivity. QLPES is a useful, accurate, brief and easy to use instrument that adequately reflects the way epilepsy affects the quality of life of children/adolescents, as well as it reflects how pediatric epilepsy affects quality of life in the perspective of their parents or caregivers.

Problem: Older adults may change their view on what is important to their health-related quality of life (HRQOL). They may alter their opinion about areas relevant to HRQOL (reconceptualization), or how important these areas are to them (reprioritization), and this can be referred to as response shift (RS). Overtime, changes in HRQOL may be imprecise (underestimated or overestimated) if RS occurs. Providing detailed information about RS in the older adult population will have many implications for health professionals, family members, caregivers, policy makers, and researchers. The purpose was to explore RS in HRQOL in community-dwelling older men. Methods: Data from the Manitoba Follow-up Study (MFUS) was used as 360 older men returned the Successful Aging Questionnaire in each of five years (2007-2011). The participants identified the importance of 15 items, which reflect the physical (2 items), mental (5 items), and social domains (8 items) of HRQOL. Descriptive analysis was performed using SPSS21. An individualized method was used to identify different aspects of RS at group and individual levels, as well as the item level. Predictors of RS were also identified using logistic regression in a one-year period. Results: Mean age of participants was 89.7 years (SD 2.9) in 2011. Across 15 items over a one-year period, RS varied from a low of 9.3% for the ‘being mentally aware’ item to 39.3% for the ‘having goals/making plans’ item. Because we were examining RS of 15 items, it was very uncommon to find older men with no RS on all items. Only 27 out of 360 older men (7.5%) provided the same response on all the items they answered at both times (2010-2011). The average of the percent of people showing RS over 15 items, across four time periods, within three domains, was 24.4%. Reprioritization was more common in physical and mental domains, respectively, whereas reconceptualization was seen mainly in the social domain. Further, most of those who showed reprioritization, showed a decrease in importance, while most of those who showed reconceptualization, dropped a concept. Older men who were older, married, living independently, and recently did not participate in activities, were more likely to show RS in certain items. Older men with lower self-rated health were less likely to show RS. Conclusions: Data from the MFUS presents an opportunity to assess RS by using an individualized method that is simple to conduct and interpret in research and clinical settings. This method provides extensive demonstration of RS including magnitude, timing, type, direction, and predictors. RS should be considered an important part of aging, when planning resources and individualizing interventions for the older adult population. Future studies should design a method that evaluates RS individually, similar to our method. / October 2015