Elisabet Mattsson

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.

Are there any positive consequences of childhood cancer? A review of the literature

The aim was to investigate whether there are any positive consequences of childhood cancer. Studies published 1990–2005 reporting survivors’ descriptions of positive consequences of childhood cancer were identified through a search in the databases CINAHL, PsycINFO, and PubMed. According to a manifest content analysis, positive consequences were referred to three themes: life values, relations to others, and relation to self. A second search in the same databases was conducted to identify studies investigating whether survivors of childhood cancer differ from comparison groups with regard to variables assigned to these themes. In these studies, no conclusions about positive consequences with regard to the theme life values can be drawn, as only one study was identified. In addition, only a small minority of findings from comparative studies indicate that childhood cancer has any positive consequences with regard to relations to others and relation to self. A majority of the results indicate that survivors do not differ from comparison groups, whereas some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. It is recommended that survivors of childhood cancer are followed up by a multi-professional team, focusing not only on the survivors’ health status but also on relations to family, friends, and partners.

Information following a diagnosis of congenital heart defect: experiences among parents to prenatally diagnosed children.

Background Prenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD. Methods Semi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis. Results Three themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet. Conclusion Early and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.

Swedish mothers and fathers of a child diagnosed with cancer: A look at their quality of life

Quality of life was investigated among Swedish mothers (n=118) and fathers (n=83) of children on (n=57) and off (n=68) cancer treatment. Parents completed the Göteborg Quality of Life Instrument, measuring (a) burden of 30 symptoms organized as follows: depression, tension, head, heart–lung, metabolic, musculo-skeletal, and gastrointestinal-urinary symptoms, and (b) experience of well-being with regard to 18 items organized as follows: physical, social, and mental well-being. Fathers reported higher mental well-being than mothers and more mothers than fathers reported symptoms of depression. Within the same family (n=70), mothers reported lower mental well-being and more symptoms than fathers. Parents of children on treatment (n=92) reported lower social and mental well-being and more symptoms of depression than parents with children off treatment (n=101). The findings suggest that fathers experience a better quality of life than mothers and that parents of children off treatment enjoy a better quality of life than parents of children on treatment.

Content and Quality of Information Websites About Congenital Heart Defects Following a Prenatal Diagnosis

BACKGROUND Pregnant women and their partners use the Internet to search for information following a prenatal diagnosis of congenital heart defect. OBJECTIVE Our aim was to explore central subjects of content and to assess the accessibility, reliability, usability, and quality of written information on publicly available information websites about congenital heart defects following a prenatal diagnosis. METHODS Following searches on Bing and Google, we included websites containing patient information in English. Hits ranged from 340,000-67,500,000 and the first 50 hits from each search were screened for inclusion (N=600). Of these hits, 39.3% (236/600) were irrelevant. A total of 67 websites were included, of which 37% (25/67) were affiliated with independent information websites, 25% (17/67) with charity/private organizations, 25% (17/67) with hospitals/clinics, and 13% (8/67) had other affiliations. The majority of the websites (76%, 51/67) could not be attributed to an author. A manifest content analysis was performed to explore central subjects of content. The DISCERN instrument was used to assess the quality of information, and the LIDA tool was used to assess accessibility, usability, and reliability of the included websites. RESULTS The content on the majority of the websites included care and treatment of children with congenital heart defects (88%, 59/67), causes of congenital heart defects (88%, 59/67), symptoms of congenital heart defects (85%, 57/67), prevalence of congenital heart defects (81%, 54/67), potential complications of congenital heart defects (75%, 50/67), prenatal diagnostics/screening methods (72%, 48/67), and specific congenital heart defects (72%, 48/67), whereas less than 10% included information about termination of pregnancy (6%, 4/67), care during pregnancy (5%, 3/67), and information specifically directed to partners (1%, 1/67). The mean of the total DISCERN score was 27.9 (SD 9.7, range 16-53). According to the instrument, a majority of the websites were categorized as very poor regarding information about effects of no treatment (88%, 59/67), support for shared decision making (85%, 57/67), achievement of its aims (84%, 56/67), explicit aims (82%, 55/67), risks of each treatment (82%, 55/67), how treatment choices affect overall quality of life (76%, 51/67), and areas of uncertainty (76%, 51/67). The mean of the total LIDA score was 92.3 (SD 13.1, range 61-127). According to the tool, a majority of the websites were categorized as good with regard to registration (97%, 65/67) and browser test (75%, 50/67), whereas a majority were categorized as poor with regard to currency (87%, 58/67), content production (84%, 56/67), and engagability (75%, 50/67). CONCLUSIONS Difficulties in finding relevant information sources using Web search engines and quality deficits on websites are an incentive for health professionals to take an active part in providing adequate and reliable information online about congenital heart defects.

Cancer during Adolescence: Negative and Positive Consequences Reported Three and Four Years after Diagnosis

Persons diagnosed with cancer during adolescence have reported negative and positive cancer-related consequences two years after diagnosis. The overall aim was to longitudinally describe negative and positive cancer-related consequences reported by the same persons three and four years after diagnosis. A secondary aim was to explore whether reports of using vs. not using certain coping strategies shortly after diagnosis are related to reporting or not reporting certain consequences four years after diagnosis. Thirty-two participants answered questions about coping strategies shortly after diagnosis and negative and positive consequences three and four years after diagnosis. Answers about consequences were analysed with content analysis, potential relations between coping strategies and consequences were analysed by Fishers exact test. The great majority reported negative and positive consequences three and four years after diagnosis and the findings indicate stability over time with regard to perceived consequences during the extended phase of survival. Findings reveal a potential relation between seeking information shortly after diagnosis and reporting a more positive view of life four years after diagnosis and not using fighting spirit shortly after diagnosis and not reporting good self-esteem and good relations four years after diagnosis. It is concluded that concomitant negative and positive cancer-related consequences appear stable over time in the extended phase of survival and that dialectical forces of negative and positive as well as distress and growth often go hand-in-hand after a trauma such as cancer during adolescence.

Prostate-Specific Antigen for Prostate Cancer Staging in a Population-based Register

Objective: Previous studies have shown a relationship between serum prostate-specific antigen (PSA) level and prostate tumour volume. Reports based on selected case series have also indicated that serum PSA may be used for staging, although a varying prevalence of metastasizing tumours complicates the interpretation of these studies. In order to determine the accuracy of the serum level of PSA in predicting the presence of metastases we performed a prospective cohort study of a geographically defined population of men with prostate cancer. Methods: Serum level of PSA and the results of investigations for regional lymph node and distant metastases were recorded for all 8328 men with prostate cancer registered in the Swedish National Prostate Cancer Register 1996-1997. Results: The prevalence of lymph node metastases among men who had undergone lymph node exploration was 4%, 16% and 33% for well, moderately and poorly differentiated tumours. The corresponding prevalence of distant metastases was 12%, 30% and 48%. With serum PSA <20 ng/ml as a cut-off point the negative likelihood ratios for well and moderately differentiated tumours were found to be 0.47 and 0.45 for lymph node metastases and 0.24 and 0.18 for distant metastases, resulting in post-test probabilities >92% for the exclusion of metastases. In men with poorly differentiated tumours, the negative likelihood ratio would need to be even lower to safely exclude disseminated disease. Conclusion: For well to moderately differentiated tumours, further investigations to assess the presence of metastases may be omitted with no great risk for understaging if serum PSA <20 ng/ml.

Experiences of termination of pregnancy for a fetal anomaly : A qualitative study of virtual community messages

OBJECTIVE to explore experiences described by posters in Swedish virtual communities before, during and after termination of pregnancy due to a fetal anomaly. DESIGN cross-sectional qualitative study of messages in virtual communities. The messages were purposefully selected in 2014 and analyzed with inductive qualitative manifest content analysis. SETTING two large and active Swedish virtual communities. SAMPLE 1623 messages from 122 posters (112 females, 1 male, and 9 did not disclose their sex), written between 2008 and 2014. The majority of the posters were females (91%) with recent experience of termination of pregnancy following different prenatal diagnoses (63% less than one year since the termination). MEASUREMENTS AND FINDINGS before the termination, posters experienced an emotional shock and a difficult decision. During the termination, they needed compassionate care from present caregivers, experienced intense emotional and physical pain, lacked an understanding about the abortion, and expressed varied feelings about the option to view the fetus. After the termination, posters used different strategies to come to terms with and accept the decision, experienced a perinatal loss, expressed fears of recurrence, and longed for a new child. KEY CONCLUSIONS spanning across the time before, during and after the abortion, women who terminate a pregnancy due to a fetal anomaly express considerable physical and emotional pain, with psychosocial and reproductive consequences. IMPLICATIONS FOR PRACTICE information and preparation, including the decision whether or not to view the fetus, are important aspects to consider when caring for individuals who have decided to terminate a pregnancy for a fetal anomaly. The findings indicate a need for structures that offer support to women who suffer from fears of recurrence in future pregnancies.

Findings on how adolescents cope with cancer--a matter of methodology?

Objectives: The various conclusions drawn from previous studies on how adolescents cope with cancer might partly be explained by methodological issues. The aim was to explore how adolescents recently diagnosed with cancer report that they cope with disease‐ and treatment‐related distress in response to closed‐ and open‐ended questions, respectively.