Louise von Essen

Measuring health-related quality of life in adolescents and young adults: Swedish normative data for the SF-36 and the HADS, and the influence of age, gender, and method of administration

BackgroundThere is a paucity of research about health-related quality of life (HRQL) among adolescents, as studies have to a large extent focused on adults. The main aim was to provide information for future studies in this growing field by presenting normative data for the Short Form 36 (SF-36) and the Hospital Anxiety and Depression Scale (HADS) for Swedish adolescents and young adults. Additionally, the influence of age and gender, as well as method of administration, was investigated.MethodsA sample of 585 persons aged 13–23 was randomly chosen from the general population, and stratified regarding age group (young adolescents: 13–15 years; older adolescents: 16–19 years, and young adults: 20–23 years) and gender (an equal amount of males and females). Within each stratum, the participants were randomized according to two modes of administration, telephone interview and postal questionnaire, and asked to complete the SF-36 and the HADS. Descriptive statistics are presented by survey mode, gender, and age group. A gender comparison was made by independent t-test; and one-way ANOVA was conducted to evaluate age differences.ResultsEffects of age and gender were found: males reported better health-related quality of life than females, and the young adolescents (13–15 years old) reported better HRQL than the two older age groups. The older participants (16–23 years old) reported higher scores when interviewed over the telephone than when they answered a postal questionnaire, a difference which was more marked among females. Interestingly, the 13–15-year-olds did not react to the mode of administration to the same extent.ConclusionThe importance of taking age, gender, and method of administration into consideration, both when planning studies and when comparing results from different groups, studies, or over time, is stressed.

Self‐esteem, depression and anxiety among Swedish children and adolescents on and off cancer treatment

Self‐esteem, depression and anxiety were investigated in 51 Swedish children and adolescents, 8‐18y, on (n=16) and off (n= 35) cancer treatment. The self‐report measures “I Think I Am” (ITIA), the Childrens Depression Inventory (CDI) and the Revised Childrens Manifest Anxiety Scale (RCMAS) were used. Data were compared with data previously obtained by others for healthy Swedish children. Children and adolescents on treatment showed levels of self‐esteem, depression and anxiety comparable to those of healthy children. However, children and adolescents off treatment reported higher depression and anxiety levels and lower psychological well‐being and physical self‐esteem than have been reported for healthy Swedish children. Seven children (14%) reported a high level of depression, six of whom were off treatment. The findings suggest that the period after treatment termination is characterized by a higher risk of psychosocial problems than is the actual treatment period.

Proxy ratings of patient quality of life--factors related to patient-proxy agreement.

It is generally agreed that patients are the best raters of their quality of life (QL). Where it is not possible to obtain information from the patient the use of proxies can be an alternative. The proxy can be a significant other or a healthcare provider. The use of a proxy offers a solution to non-response. The accuracy of proxy reports is most typically determined by examining the extent to which patient and proxy ratings agree. A literature overview shows that agreement depends on several factors. Methodological limitations may have an impact on agreement. Agreement also varies according to the QL domains under study; the highest agreement is usually found for concrete domains. In addition, patient and proxy characteristics are related to agreement. When designing QL studies the threat of selection bias due to exclusion of patients has to be balanced against the threat of information bias due to proxy ratings.

Health related quality of life and psychosocial function among patients with carcinoid tumours. A longitudinal, prospective, and comparative study

BackgroundThe aim was to investigate HRQoL and psychosocial function among patients with carcinoid tumours, longitudinally and prospectively, and to compare HRQoL among patients with carcinoid tumours to that of the Swedish general population. The aim was also to investigate the prevalence of distress during the first year after diagnosis.MethodsAt four assessments during the first year after diagnosis, HRQoL was measured by the EORTC QLQ-C30 3.0, anxiety and depression by the HADS, and prevalence, and worst aspects of distress by an interview guide. ANOVA was performed in order to study changes over time with regard to HRQoL, anxiety and depression. Comparisons regarding HRQoL between patients and the Swedish population were made by the use of one-sample t-tests and changes over time regarding the prevalence of distress was investigated by means of Cochrans Q.ResultsHigh levels of physical-, emotional-, cognitive-, and social function and somewhat lower levels of role function and global quality of life were reported at all assessments. Role- and emotional function increased over time. Patients reported lower role function and global quality of life and more problems with fatigue and diarrhoea than the Swedish general population, at all assessments. Fatigue, limitations to work and pursue daily activities, and worry that the illness will get worse were among the most prevalent aspects at all assessments. At all assessments the majority reported worrying about the familys situation, the ability to care for the family, and worrying before the check-up.ConclusionIt is concluded that HRQoL and psychosocial function among patients with carcinoid tumours remains stable during the first year, that the patients report a lower HRQoL than the Swedish general population, and that a majority of the patients report a number of aspects of emotional distress. In the clinical care, it should be considered that the majority of patients report not only fatigue and diarrhoea but also worries about their prognosis, their families, tests, and examinations. Efforts to reduce these worries should be made.

Aspects of quality of life, anxiety, and depression among persons diagnosed with cancer during adolescence: A long-term follow-up study

AIM Quality of life, anxiety, and depression among persons diagnosed with cancer during adolescence up to 4 years after diagnosis, and in comparison with a reference group were investigated. METHODS The cancer group (N=61) completed the SF-36 mental health and vitality and the HADS anxiety and depression subscales shortly after and at 6, 12, 18, 24, 36 and 48 months after diagnosis. A reference group (N=300) randomly drawn by Statistics Sweden from their civil register of the Swedish population completed the same instruments at one assessment. Data were collected by telephone interviews. RESULTS Up to 6 months after diagnosis the cancer group reports lower levels of mental health and vitality and a higher level of depression than the reference group. At 18 months after diagnosis a reverse situation occurs and at 48 months after diagnosis the cancer group reports a higher level of vitality and lower levels of anxiety and depression than the reference group. CONCLUSION The findings suggest that a positive psychological change may develop in the aftermath of cancer during adolescence. However, efforts should be made to enable clinicians and nursing staff to identify and to provide psychological support to individuals who experience low quality of life and high emotional distress. If these problems remain undetected and appropriate support is not provided the distress may become a barrier to physical recovery, resulting in a vicious cycle of physical and mental disability.

Negative and positive consequences of adolescent cancer 10 years after diagnosis : an interview-based longitudinal study in Sweden

The aim of this study was to provide insight into survivor‐reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis.

Health-related Quality of Life in Patients with Endocrine Tumours of the Gastrointestinal Tract

Health-related quality of life (HRQOL) (EORTC QLQ-C30) and levels of anxiety and depression (HADS) were investigated in patients with endocrine tumours of the gastrointestinal tract treated with interferon and/or a somatostatin analogue. In addition, patient perceptions of the importance of and satisfaction with some HRQOL aspects were studied. QOL was perceived as quite good, but more than half of the patients reported diarrhoea. The levels of anxiety and depression were low. Patients perceived physical HRQOL aspects as most important for a good QOL and stated the highest satisfaction with some social aspects. Patients who reported high levels of anxiety or depression were less satisfied with several HRQOL aspects, had more health problems, and a lower level of functioning on several of the EORTC QLQ-C30 scales and single items. Neither demographic nor medical background variables seemed to have an influence on the results. The relatively high QOL could be explained by the fact that most patients had had their treatment for a long period and thus had time to adjust to the situation.

Locked entrance doors at psychiatric wards – Advantages and disadvantages according to voluntarily admitted patients

Entrance doors at wards where psychiatric care is provided are sometimes locked, which is not the case at wards where somatic care is provided. How locked entrance doors at psychiatric wards are experienced by patients has been investigated to a very limited extent. The aim was to describe voluntarily admitted patients’ perceptions of advantages and disadvantages about being cared for on a psychiatric ward with a locked entrance door. Audio-taped, semi-structured interviews were conducted with 20 patients voluntarily admitted at psychiatric wards. Content analysis revealed six categories of advantages and 11 categories of disadvantages. Most advantages were categorized as “protects patients and staff against ‘the outside’ ”, “provides patients with a secure and efficient care” and “provides staff with a sense of control over the patients”. Most disadvantages were categorized as “makes patients feel confined”, “makes patients feel dependent on the staff” and “makes patients feel worse emotionally”. Patients perceive a variety of advantages and disadvantages, for themselves, their visitors and staff, connected to locked entrance doors at psychiatric wards. A locked door may make the ward appear as both a prison and a sanctuary. It is important that staff try to minimize patients’ concerns connected to the locked door.

Does time heal all wounds? A longitudinal study of the development of posttraumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents.

A lack of longitudinal studies has hampered the understanding of the development of posttraumatic stress symptoms (PTSS) in parents of children diagnosed with cancer. This study examines level of PTSS and prevalence of posttraumatic stress disorder (PTSD) from shortly after diagnosis up to 5 years after end of treatment or childs death, in mothers and fathers.

Women’s voices about emergency contraceptive pills “over-the-counter”: a Swedish perspective

This study aimed to describe womens experiences with the emergency contraceptive pill (ECP) as a prescription-free over-the-counter (OTC) product. Women (median age 24) who had bought ECP as an OTC product were interviewed in focus groups. Data were analyzed by content analysis. All participants appreciated the OTC availability. Timesaving aspects were seen as important benefits and pharmacies were seen as the right place to sell ECP. The media was the main source of information about OTC, probably due to the debates of the introduction of ECP as an OTC product in Sweden. All women discussed the mechanism of action. The womens experiences of interacting with the pharmacists were both positive and negative. Inconsistencies in routines with regard to providing ECP and different attitudes toward use of ECP among the pharmacists, were identified. The women expected up-to-date information about ECP and the OTC availability from gynecologists and other health professionals.