Sleep is a basic need, important to physical and psychological recovery. Insomnia implies sleep-related complaints, such as difficulty falling asleep, difficulty staying asleep, early awakening, or non-restorative sleep (NRS) in an individual who has adequate circumstances and opportunity to sleep.  Insomnia is also related to impairment of daytime functions. The prevalence of reported sleep disturbances varies between 15% and 60% in patients with coronary artery disease (CAD) up to five years after intervention. Disturbed sleep may have a negative impact on self-care capacity and behaviours. Little attention has been given to evaluation of sleep promotion through individualized non-pharmacological interventions among CAD patients. The overall aim of this thesis was to describe the impact of sleep quality and disrupted sleep on health-related quality of life (HRQoL) in patients with stable CAD, in comparison to a population-based group. The objective was also to evaluate an individualized non-pharmacological programme to promote self-care in sleep. Four studies were conducted during seven years, starting in 2001. Patients from six hospitals in the south of Sweden were invited to participate. In addition, an age and gender matched population-based group was randomly selected during the same period as the patients and was used for comparison with the CAD patients in two of the studies. Data was collected through interviews, self-reported questionnaires, a study specific sleep diary and actigraphy registrations. A pretest-posttest control design was used to evaluate whether an individualized non-pharmacological intervention programme could promote self-care in sleep-activity in CAD patients. The results showed a high prevalence of insomniac CAD patients out of whom a large proportion were non-rested insomniacs. This showed that NRS is one of the core symptoms of insomnia. On the other hand there were weak or non-significant gender differences with increasing insomnia severity. Severe insomniac CAD patients displayed a two or threefold higher presleep arousal or anxiety score and were more limited in taking physical exercise than the general population. Generally low sleep efficiency (SE%) was revealed in the studies, particularly among severe non-rested insomniac CAD patients. Among CAD patients, the individualized non-pharmacological programme to promote self-care in sleep-activity indicated improvements in sleep and HRQoL. This thesis elucidates the importance of focusing on the individual’s perception of their sleep-activity and health in their local context and supporting self-care management. Furthermore, it is of importance that nurses set individual goals together with the patient in order to increase self-efficacy to promote HRQoL.

The overall aim of this thesis is to investigate health-related quality of life (HRQoL), anxiety and depression in patients with endocrine gastrointestinal (GI) tumours. Patient as well as staff perceptions were assessed. HRQoL was studied with the EORTC QLQ-C30, and anxiety and depression with the Hospital Anxiety and Depression Scale. In addition, patient perceptions of the importance of and satisfaction with selected HRQoL aspects were investigated. Semi-structured interviews with open-ended questions were conducted to identify disease- and treatment-related distress, what constitutes a good quality of life and strategies to "keep a good mood" among these patients. Patients reported a relatively good HRQoL and low levels of anxiety and depression. However, they reported a lower HRQoL than could be expected for healthy people of similar age and gender. Staff gave a more pessimistic view of patient satisfaction with HRQoL aspects than did patients, and staff did not accurately judge individual patients' levels of anxiety and depression. Importance>satisfaction discrepancies for HRQoL aspects may identify patients with a low quality of life. HRQoL, anxiety and depression did not change substantially during the first year of treatment. Categories identified through content analysis of interview data concerning distress and quality of life were referred to physical, emotional or social dimensions. Identified strategies to "keep a good mood" were classified as Internal or External. Most categories of distress that were identified are covered by the EORTC QLQ-C30 and/or the HADS, but some additional emotional and social aspects of distress emerged from the interview data. Receiving good care was identified as a strategy to "keep a good mood". This result indicates a possible and potentially important relation between the quality of care and patient HRQoL.

Many patients with an aneurysmal subarachnoid haemorrhage (SAH) exhibit difficulties in rehabilitation, even in cases of a good prognosis. The present project investigates this using qualitative methods and standardised outcome measures. Patients with SAH treated at Uppsala University Hospital between 2002 and 2005 with an expected good prognosis were consecutively included. In addition, nurses working with such patients were interviewed. Outcome was assessed in terms of perception of care, psychiatric health, coping and health related quality of life (HRQoL). Qualitative content analyses revealed eight categories, which were divided into two patterns, Confident or Pessimistic perception of recovery, largely on the basis of the presence or absence of depression. Eighty-three patients were assessed by The Structured Clinical Interview for DSM-IV, Axis I (SCID-I). Forty-one percent fulfilled criteria for any psychiatric disorder seven months after SAH and 45 % presented with a history of lifetime psychiatric morbidity. Logistic regressions indicated that a psychiatric history was related to a higher risk of psychiatric problems seven months after SAH, as well as a lower return to work. SAH patients had lower HRQoL than the general Swedish population; almost entirely in the subgroup with a psychiatric history prior to the SAH. Those with a psychiatric history used more evasive, fatalistic, emotive and palliative coping strategies associated with inability to handle illness. Multiple regressions revealed that a psychiatric history and use of coping were independently associated with HRQoL, albeit more in the mental than the physical domains. Qualitative content analyses revealed that nurses viewed patients’ support needs as a process ranging from technological to emotional care. Shortcomings in the communication between nurses in acute and rehabilitation settings on the subject of support were acknowledged. The results underline the importance of early diagnosis of coexisting psychiatric illness and the need for an intact health care chain.

A major burn is one of the most severe traumas a person can experience, and recovery can be a protracted process. The principal aim was to increase the knowledge base regarding factors related to return to work and health-related quality of life (HRQoL) after burns. Patients treated at the Uppsala Burn Center between 2000 and 2007 were included on a consecutive basis. Assessments were made at hospitalization, and thereafter and included a home visit 2 to 7 years after injury. The psychometric properties of the generic HRQoL instrument EQ-5D were investigated. The results support the use of EQ-5D as an adjunct to burn-specific assessments of HRQoL. Most former patients exhibited a good HRQoL at 2 to 7 years postburn. Not working at the time of injury and having PTSD at 12 months, as well as having low scores on the EQ VAS at 12 months, were related to a worse EQ VAS score at 2 to 7 years after injury. The majority of former patients had returned to work 2 to 7 years postburn. Time to return to work was predicted by length of hospital stay and a personality disorder diagnosis. Predictors for not returning to work were length of stay and having any anxiety or substance use disorder prior to injury. Those who were not back at work reported lower generic and burn-specific health, and exhibited more psychiatric morbidity at follow-up than those who were working. The latter group exhibited HRQoL that was comparable to that of the general population. Participants emphasized their own psychological resources and capabilities as facilitators in the process of returning to active work. The findings suggest that an early and systematic approach for assessing recognized risk factors enhances the possibility of discovering patients at risk of developing problems during postburn adaptation.

Syfte med denna enkätstudie var att undersöka hälsorelaterad livskvalitet (HRQOL) tolv månader efter utskrivning från intensivvårdavdelning mellan kvinnor och män och mellan yngre (< 65 år) och äldre (≥65 år). Huvudresultatet visade att det fanns signifikanta skillnader mellan kvinnor och män hur de skattar HRQOL i delskala smärta. Ingen signifikant skillnad fanns mellan yngre och äldre. Även med ett litet antal patienter är skattad HRQOL för hela undersökningsgruppen jämförbar med större studier inom område som mäter HRQOL med SF-36. / The aim of the study was to assess health-related quality of life (HRQOL) twelve months after discharge from the intensive care unit (ICU) as well as to study if there were differences in HRQOL between younger (<65 years) and older (≥65 years) patients. There were significant differences between women and men in how they estimated HRQOL in the domain pain. No significant differences existed between younger and older patients and the HRQOL overall twelve months after discharge from ICU were consistent with previous HRQOL SF-36 research results even with a small sample of patients.

Auf der Grundlage der DETECT-Studie wird die querschnittliche Assoziation depressiver Störungen mit einem weiten Spektrum körperlicher Erkrankungen in einer bundesweit repräsentativen Stichprobe von 51.000 Patienten aus der primärärztlichen Versorgung in Deutschland sowie der Zusammenhang mit gesundheitsbezogener Lebensqualität und Arbeitsunfähigkeit untersucht. Das Vorliegen einer Depression wurde über den Depression Screening Questionnaire (DSQ) mit seinem ICD-10 Algorithmus ermittelt. Bei einer Gesamt-Querschnittsprävalenz depressiver Störungen von 7,5 % ergaben sich erhöhte Depressionsraten und signifikante Assoziationen für nahezu alle untersuchten Krankheitsgruppen. (1) Ko- und Multimorbidität somatischer als auch somatischer mit depressiven Störungen sind die Regel: „Reine“ (nicht komorbide) Depressionen sind ebenso wie reine somatische Erkrankungen die Ausnahme. (2) Das Depressionsrisiko steigt stetig mit der Anzahl komorbider Krankheiten. (3) Besonders ausgeprägte Assoziationen ergaben sich für schwergradige Herzinsuffizienzen (OR: 5,8), diabetische Folgekomplikationen (OR: 1,7–2,0), koronare Herzerkrankungen (KHK) (OR: 1,7), zerebrale Insulte (OR: 2,5) sowie muskuloskelettäre Erkrankungen (OR: 1,5). Demgegenüber waren z. B. die Raten bei Hyperlipidämie (OR: 1,1) nur leicht erhöht. (4) Komorbide Depression und steigende Multimorbidität waren mit stetig zunehmenden Arbeitsunfähigkeits- raten und absinkender gesundheitsbezogener Lebensqualität assoziiert. Angesichts der quantitativen Bedeutung der Depression sowie des mit Multimorbidität drastisch ansteigenden Depressionsrisikos und der damit verbundenen hohen direkten und indirekten Krankheitslast für das Gesundheitssystem und die Gesellschaft ist das hohe Ausmaß der Unterschätzung von Depression in der Routineversorgung besorgniserregend. / As part of the DETECT study, a nationwide representative clinical-epidemiological study, the frequency and associated problems of comorbid depression with a wide range of somatic illnesses were studied in N = 51,000 primary care patients. Further the association with health related quality of life and disability is examined. Depression was assessed with the Depression Screening Questionnaire (DSQ) with an ICD-10 algorithm. Results: (1) 7.5 % of all primary care patients met criteria for ICD-10 depressive disorders. (2) Depression risk was increased whenever any somatic disorder was present and increased in a dose-response relationship by number of comorbid conditions. (3) Elevation of depression risk was fairly independent of type of diagnosis, although associations with coronary heart disease (OR: 1.7), diabetic complications (OR: 1.7– 2.0), stroke (OR: 2.5) and pain-related chronic disorders (OR: 1.5) were particularly pronounced. Moderate associations were found for hyperlipidaemia (OR: 1.1). (4) Associated with the increasing number of comorbid conditions, patients with comorbid depression had increasingly more disability days and lower health related quality of life. It is concluded that the degree to which the frequency and the deleterious effects of comorbid depression is underestimated and unrecognized is alarming. The use of comorbidity indices might improve recognition.

The overall aim of this thesis was to describe the prevalence of depressive symptoms, sleep disordered breathing (SDB) and sleep complaints, as well as to investigate the prognostic value of health-related quality of life (Hr-QoL) and depressive symptoms on mortality in an elderly community living population with a focus on those with impaired systolic function/heart failure (HF). Descriptive, prognostic and explorative study designs were used to examine if a single question about global perceived health (GPH) is associated with the domains of Hr-QoL as assessed by the SF-36 (I), as well as to evaluate whether GPH provided prognostic information concerning cardiovascular mortality (II). The aim was also to evaluate if depressive symptoms are associated with mortality (III), and to describe the prevalence of SDB and its relationship to impaired systolic function, different insomnia symptoms, as well as excessive daytime sleepiness (IV). In primary care elderly patients with HF, GPH correlated to the physical and mental aspects of Hr-QoL. Patients who rated poor GPH also scored worse physical and mental Hr-QoL compared to patients with good GPH, but the mental aspect of Hr-QoL was however not significant (p<0.07) (I). Moreover, GPH also had an independent association with cardiovascular mortality during a ten-year follow-up. Compared to patients with good GPH, those who scored poor GPH had a four times increased risk for cardiovascular mortality (II). A total of 24% of the patients with HF suffered from depressive symptoms, not significantly different compared to 19% among those without HF. Depressive symptoms were a poor prognostic sign during the six-year follow-up and HF patients with depressive symptoms had the highest risk for cardiovascular mortality compared to HF patients without depressive symptoms (III). SDB is common among elderly people living in the community, almost one quarter (23%) had moderate or severe SDB. However, people with moderate impaired systolic function had a median apnea hypopnea index that was more than twice as high compared to those with normal systolic function (10.9 vs. 5.0, p<0.001). No obvious associations between SDB and excessive daytime sleepiness or the insomnia symptoms; difficulties maintaining sleep; non-restorative sleep; or early morning awakenings were detected. Difficulties initiating sleep were however more common in those with moderate or severe SDB (IV). GPH can be used as a simple tool in clinical routine practice as an aid in identifying patients in need of additional management. SDB is a common phenomenon among elderly people and associated with impaired systolic function, but with a limited impact on subjective sleep complaints. Depressive symptoms were shown to be a poor prognostic sign and may amplify the patient’s experience of suffering. Screening for depressive symptoms could therefore be an important action in the management of patients with HF.

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.

A disproportionate number of African American women are at increased risk for uterine fibroid tumors (UF) compared to their Caucasian, Asian, and Hispanic counterparts. Researchers have indicated that women diagnosed with UF can have a poorer health-related quality of life (HRQOL) when compared to women who do not have a diagnosis of UF. The overall aim of this study was to explore the impact of UF symptoms on the HRQOL of African American women. A quantitative, cross-sectional design was employed utilizing the revised version of Wilson and Cleary's model of HRQOL. A sample was gathered of 80 participants who were African American women between age 30 and 45 years with a current diagnosis of UF. Linear and multiple hierarchical regressions were performed to determine the relationship among UF symptom severity and HRQOL based on 6 subscales of HRQOL (as measured by the UFS-QOL). There was a statistically significant association between symptom severity, the 6 subscale variables of HRQOL, and employment. No significant associations were observed with age, family history (hx) of UF diagnosis, body mass index, general health perception, overall quality of life, and symptom severity. The social change implication for this study is to provide information that can direct health care providers in the development of health maintenance programs that are sensitive to the needs of African American women diagnosed with UF. In addition it will promote the need for public health professionals and medical organizations to increase the availability of information related to UF symptoms and the impact of UF symptoms on HRQOL among women.

Background Chronic physical illness (CPI) is a prolonged, rarely cured condition, which often causes impairment of activities of a child’s or adolescent’s daily living. This thesis encompasses three cohorts of patients with CPI – diagnosed with diabetes, asthma or epilepsy. Psychological disturbances and difficulties experienced by young patients with CPI are common, and changes in the family environment are inevitable. Hence, from a health care perspective, three cohorts of CPI can give a frame of reference to guide our understanding on the psychological health of adolescents with CPI, and the disease impact on their life; to determine target groups for psychological interventions, and to identify important directions for health care development. Objectives The overall aim of the study was to assess the psychological well-being of adolescents with CPI in Northern Russia, as well as to identify factors of potential risk or protective significance for adolescents’ well-being. Methods The questionnaires covering different aspects of psychological well-being as behavior-emotional problems, depressive symptoms, self-esteem, and health-related quality of life (HRQoL) as well as family functioning were answered by the adolescents with CPI and their mothers, including the Child Behavior Check-List (CBCL) and Youth Self-Report (YSR); Beck Depression Inventory (BDI); The Rosenberg Self-Esteem Scale; I think I am; Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48); Diabetes Quality of Life Questionnaire for Youths (DQOLY); Pediatric Asthma Quality of Life Questionnaire (PAQLQ); Self-report Family Inventory (SFI); and Socio-Economic Status (SES) questions. Disease related clinical information was withdrawn from the pediatric outpatient clinic. The sample consisted of 148 adolescents with CPI identified from Arkhangelsk pediatric outpatient clinic records and their mothers. Comparative data were obtained from a group of 301 schoolchildren and their mothers. Results Results in Paper I showed certain differences in mental health of adolescents with CPI compared to healthy counterparts indorsed by mother’s reports alone, while self-reports by adolescents with CPI didn’t show any discrepancy in the level of behavior/emotional problems and depression compared to healthy peers. Most pronounced symptoms were found in adolescents with asthma and epilepsy associated with disease severity and gender. In the results of Paper II there were no significant differences found in self/mother reported family functioning of the total group with CPI versus controls. The perception of family functioning differed between the CPI groups and was associated to certain disease-related and non-disease factors. Paper III showed that adolescents with diabetes and asthma maintain positive self-esteem similar to or even higher than that of their healthy counterparts. Adolescents with epilepsy reported lower self-esteem compared to other CPI groups or controls. A diversity of factors contributed to self-esteem variation within the CPI groups. Paper IV provides evidence that adolescents with CPI maintained relatively moderate to high levels of HRQoL. The domains affecting HRQoL were related to both disease-specific (severity) and non-disease factors (gender and SES). Conclusions In the scope of the present thesis we assessed and described psychological well-being and family functioning of adolescents with chronic illnesses. Our results demonstrate generally low levels of behavior-emotional problems, depressive symptoms, and relatively high self-esteem, positive health-related quality of life, and successful family functioning in adolescent with CPI in Northern Russia. However, we conclude that there is a risk of mental health problems, particularly of internalizing nature, in adolescents with asthma and epilepsy. The significant risk factors associated with psychological well-being mediated by family functioning in CPI groups were single-parent household, child age, disease severity, child gender, family SES, and changes in the family life. High family competence and successful family functioning are indisputable protective factors for psychological well-being in adolescents with CPI.