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  • 1.
    Ander, Malin
    et al.
    Uppsala universitet.
    Grönqvist, Helena
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Engvall, Gunn
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    Ljungman, Gustaf
    Uppsala universitet.
    Lyhagen, Johan
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Essen, Louise von
    Uppsala universitet.
    Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 5, p. 582-589Article in journal (Refereed)
    Abstract [en]

    Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis. Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development. Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety. Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

  • 2.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Karlsson, Anna-Malin
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Content and quality of information websites about congenital heart defects following a prenatal diagnosis2015In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 4, no 1, p. 66-76Article in journal (Refereed)
    Abstract [en]

    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.

  • 3.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Karlsson, Anna-Malin
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Experiences of termination of pregnancy for a fetal anomaly: A qualitative study of virtual community messages.2016In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 41, p. 54-60Article in journal (Refereed)
    Abstract [en]

    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.

  • 4.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children2015In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 2Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Experiences of Informational Needs and Received Information Following a Prenatal Diagnosis of Congenital Heart Defect2016In: Prenatal Diagnosis, ISSN 0197-3851, E-ISSN 1097-0223, Vol. 36, no 6, p. 515-522Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To explore the need for information and what information was actually received following a prenatal diagnosis of a congenital heart defect, in a country where termination of pregnancy beyond 22 weeks of gestation is not clinically performed. METHODS: Twenty-six Swedish-speaking pregnant women (n = 14) and partners (n = 12) were consecutively recruited for semi-structured telephone interviews following the prenatal diagnosis of congenital heart defect. Data was analyzed using content analysis. RESULTS: Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Objective, honest and detailed information about multiple subjects were needed, delivered repeatedly and supplemented by written information/illustrations. Eighteen respondents had used the Internet to search for information and found issues involving searching difficulties, low quality, and that it was too complex, insufficient or unspecific. Those who terminated the pregnancy criticized that there was a lack of information about termination of pregnancy, both from health professionals and online sources, resulting in unanswered questions and unpreparedness. CONCLUSION: Individuals faced with a prenatal diagnosis of a congenital heart defect need individualized and repeated information. These needs are not all adequately met, as individuals are satisfied with the specialist consultation but left with unanswered questions regarding pregnancy termination.

  • 6.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Landqvist, Mats
    Södertörns högskola.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Communication of support and critique in Swedish virtual community threads about prenatal diagnoses of fetal anomalies.2016In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, no 1Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: A prenatal diagnosis of a fetal anomaly involves acute grief and psychological distress. The Internet has the potential to provide virtual support following the diagnosis. The overall aim was to explore communication of support and critique in Swedish virtual community threads about prenatal diagnoses of fetal anomalies.

    METHODS: Systematic searches in Google resulted in 117 eligible threads. Fifteen of these were purposefully selected and subjected to deductive content analysis.

    RESULTS: The virtual support involved mainly emotional support (meaning units n = 1,992/3,688, 54 %) and was described as comforting and empowering. Posters with experience of a prenatal diagnosis appreciated the virtual support, including the opportunity to gain insight into other cases and to write about one's own experience. Critique of the decision to continue or terminate the pregnancy occurred, primarily against termination of pregnancy. However, it was met with defense.

    CONCLUSIONS: Peer support, mainly emotional, is provided and highly appreciated in threads about prenatal diagnoses of a fetal anomaly. Critique of the decision to terminate the pregnancy occurs in virtual community threads about prenatal diagnoses, but the norm is to not question the decision. Future studies need to investigate if virtual peer support promotes psychosocial function following a prenatal diagnosis and what medium would be most suitable for these types of supportive structures.

  • 7.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Marttala, Ulla Melander
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal University College, Department of Health Care Sciences. Uppsala universitet.
    Ringnér, Anders
    Umeå universitet.
    Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: A qualitative interview study.2016In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, no 1Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Immigrants experience significant challenges when in contact with healthcare and report less satisfaction with maternity care compared to native Swedes. Research that gives voice to pregnant immigrant women and their partners following a prenatal diagnosis of a fetal anomaly is scarce. Thus, the aim of this study was to explore experiences and preferences of care following a prenatal diagnosis of congenital heart defect among Swedish immigrants.

    METHODS: Pregnant immigrants and their partners were consecutively recruited following a prenatal diagnosis of a congenital heart defect in the fetus. Nine respondents were interviewed in five interviews, four with the aid of a professional interpreter. The material was analyzed using manifest qualitative content analysis.

    RESULTS: The analysis resulted in five categories: 1) "Trustworthy information", 2) "Language barriers", 3) "Psychosocial situation", 4) "Peer support", and 5) "Religious positions".

    CONCLUSION: The potential need for interpreter services, visual information, psychosocial support, coordination with welfare officers, and respect for religious positions about termination of pregnancy are all important aspects for health professionals to consider when consulting immigrants faced with a prenatal diagnosis of fetal anomaly in the fetus. Peer support within this context needs to be further explored in future studies.

  • 8.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner.2018In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 18, no 1, article id 26Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Expectant fathers consider the second-trimester obstetric ultrasound examination as an important step towards parenthood, but are ill prepared for a detection of a fetal anomaly. Inductive research is scarce concerning their experiences and needs for support. Consequently, the aim of this study was to explore the emotional and cognitive experiences, during the time of diagnosis and decision-making, among males presented with congenital heart defect in the fetus carried by their pregnant partner.

    METHODS: Twelve expectant fathers were consecutively recruited through two tertiary referral centers for fetal cardiology in Sweden, after they had been presented with a prenatal diagnosis of congenital heart defect in the fetus carried by their pregnant partner. The respondents were interviewed via telephone, and the interviews were analyzed using inductive qualitative content analysis.

    RESULTS: The respondents experienced an intense emotional shock in connection with detection. However, they set their own needs aside to attend to the supportive needs of their pregnant partner, and stressed the importance of an informed joint decision regarding whether to continue or terminate the pregnancy. When terminating the pregnancy, they experienced a loss of a wanted child, an emotionally intense termination procedure, needs of support neglected by professionals, and worries about the risk of recurrence in future pregnancies. When continuing the pregnancy, they tried to keep a positive attitude about the coming birth, but were simultaneously worried about the postnatal situation.

    CONCLUSIONS: The findings illustrate the importance of inclusive care and adequate follow-up routines for both expectant parents following a prenatal diagnosis. This includes the initial emotional shock, the decisional process, and depending on decision reached, the termination or continuation of the pregnancy. Expectant fathers presented with a fetal anomaly need adequate follow-up routines to address worries about risk of recurrence in future pregnancies and worries about the postnatal situation.

  • 9.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Axelsson, Ove
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis.2017In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 6, no 2Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: When a heart defect is prenatally diagnosed in the fetus, expectant parents experience a great need for information about various topics. After the diagnosis, the Web is used for supplemental information, and the scarcity of research calls attention to the need to explore patient information websites from the perspectives of the intended consumers. OBJECTIVE: The overarching aim of this study was to explore the quality of Swedish patient information websites about congenital heart defects, from the perspectives of individuals with experience of a prenatal diagnosis of congenital heart defect in the fetus. METHODS: This was a mixed-methods study of websites identified through systematic searches in the two most used Web-based search engines. Of the total 80 screened hits, 10 hits led to patient information websites about congenital heart defects. A quality assessment tool inspired by a previous study was used to evaluate each website’s appearance, details, relevance, suitability, information about treatment choices, and overall quality. Answers were given on a 5-point Likert scale, ranging from 1, representing the lowest score, to 5, representing the highest score. Each website was assessed individually by persons with experience of continued (n=4) and terminated (n=5) pregnancy following a prenatal diagnosis. Assessments were analyzed with Kendall’s coefficient of concordance W, Mann-Whitney U test, Friedman’s test, and a Wilcoxon-Nemenyi-McDonald-Thompson test. In addition, each assessor submitted written responses to open-ended questions in the quality assessment tool, and two joint focus group discussions were conducted with each group of assessors. The qualitative data were analyzed with inductive manifest content analysis. RESULTS: Assessments represented a low score (median=2.0) for treatment choices and moderate scores (median=3.0) for appearance, details, relevance, suitability, and overall quality. No website had a median of the highest achievable score for any of the questions in the quality assessment tool. Medians of the lowest achievable score were found in questions about treatment choices (n=4 websites), details (n=2 websites), suitability (n=1 website), and overall quality (n=1 website). Websites had significantly different scores for appearance (P=.01), details (P<.001), relevance (P<.001), suitability (P<.001), treatment choices (P=.04), and overall quality (P<.001). The content analysis of the qualitative data generated six categories: (1) advertisements, (2) comprehensiveness, (3) design, (4) illustrations and pictures, (5) language, and (6) trustworthiness. Various issues with the included websites were highlighted, including the use of inappropriate advertisements, biased information, poor illustrations, complex language, and poor trustworthiness. CONCLUSIONS: From the perspectives of the intended consumers, patient information websites about congenital heart defects are, to a large extent, inadequate tools for supplemental information following a prenatal diagnosis. Health professionals should initiate discussions with patients about their intentions to use the Web, inform them about the varied quality in the Web-based landscape, and offer recommendations for appropriate Web-based sources.

  • 10.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: An explorative study to gain insights into perspectives on future research2016In: Research Involvement and Engagement, E-ISSN 2056-7529, Vol. 2, no 35Article in journal (Refereed)
    Abstract [en]

    Background A prenatal diagnosis of a congenital heart defect in the fetus is a traumatic life event for pregnant women and their partners. Previous research indicates a need for research that takes steps to support these individuals following the diagnosis. Patient and public involvement is a proposed method of identifying relevant research topics, leading to patient-focused research protocols and relevant support interventions.The overarching aim of this study was to gain insights into relevant future research topics among persons faced with a prenatal diagnosis of congenital heart defect in the fetus. Methods One group of parents to prenatally diagnosed children with a congenital heart defect (n = 5) and one group of individuals with experience of termination of a pregnancy following a prenatal diagnosis of a congenital heart defect (n = 5) were purposefully recruited. Each group of representatives was involved in a face-to-face focus group discussion, analyzed through qualitative content analysis. Results The representatives suggested a need for future research that addresses informational support in the forms as supplemental written information or follow-up consultations. Moreover, interventions that offer emotional support were suggested, in the forms of peer support or additional professional psychosocial support. Conclusion Several interventions were suggested by patient representatives, indicating a need for multiple intervention studies to be conducted in the context of a prenatal diagnosis of a congenital heart defect in the fetus. We recommend that future studies test supplemental written information, follow-up consultations, peer support, and additional professionals psychosocial support following the diagnosis.

  • 11.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Starke, Veronica
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly: A qualitative study of messages in online discussion boards2017In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 48, p. 53-59Article in journal (Refereed)
    Abstract [en]

    Objective: to explore written statements found in online discussion boards where parents currently expecting, or with previous experience of expecting, a child with a prenatally diagnosed congenital anomaly communicate about their emotional process from diagnosis to birth. Design: cross-sectional qualitative study of messages in public online discussion boards. Setting: Swedish public discussion boards about reproductive subjects. Sample: ten pregnant women and eight parents (of children with prenatal diagnoses) who had written 852 messages in five threads in Swedish online discussion boards identified via systematic searches. Measurements and findings: three phases were identified in the process of moving from the diagnosis to the birth: shock, existential crisis, and life remodeling. The people posting message (‘posters’) moved from initial shock to existential crisis and, lastly, a phase of remodeling life later in the pregnancy. During the pregnancy, considerable worries about both antenatal and postnatal aspects were expressed. To cope with their situation, the posters distanced themselves from the diagnoses, vented their feelings, sought control, and obtained practical support from friends and relatives. Key conclusions: expectant parents faced with a prenatal diagnosis move from initial shock to a phase of life remodeling and acceptance. Burdened with considerable worries, expectant parents cope with their situation through informational, emotional, and instrumental support from health professionals, family, friends, and peers. Implications for practice: health professionals should make sure that expectant parents feel involved in planning their children’s postnatal care, that they are offered sufficient information, and that they have access to emotional and instrumental support structures. 

  • 12.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Larsson, Gunnel
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis2011In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 6, no 12Article in journal (Refereed)
    Abstract [en]

    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 Fisher’s 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.

  • 13.
    Engvall, Gunn
    et al.
    Uppsala universitte.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    Findings on how adolescents cope with cancer: a matter of methodology?2011In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 20, no 10, p. 1053-1060Article in journal (Refereed)
    Abstract [en]

    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.Methods: Adolescents diagnosed with cancer 4-8 weeks ago (N=56) answered closed- and open-ended questions over the telephone about which coping strategies they use to cope with physical concerns, personal changes, feelings of alienation, and worries.Results: In response to closed-ended questions, most adolescents reported using emotion-focused coping (Accepting and Minimising) while, in response to open-ended questions, meaning-based (i.e. Positive thinking) and problem-focused (i.e. Problem solving) coping were most often mentioned. A majority reported using Minimising and Seeking support in response to closed-ended questions, but very few adolescents mentioned using these strategies in response to open-ended questions.Conclusions: Adolescents’ reports of how they cope with disease- and treatment-related distress vary depending on antecedent closed- and open-ended questions. Responses to closed-ended questions appear to be more indifferent to aspects of distress than responses to open-ended questions. Strategies representing meaning-based coping should be included in future studies investigating how adolescents recently diagnosed with cancer cope with disease- and treatment-related distress.

  • 14.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Skolin, Inger
    Karolinska institutet.
    Mattsson, Elisabet
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 5, p. 605-611Article in journal (Refereed)
    Abstract [en]

    PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff’s possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients’ needs, are suggested.

  • 15.
    Gerhardsson, Emma
    et al.
    Uppsala universitet.
    Hildingsson, Ingegerd
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Prospective questionnaire study showed that higher self-efficacy predicted longer exclusive breastfeeding by the mothers of late preterm infants.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 5, p. 799-805Article in journal (Refereed)
    Abstract [en]

    AIM: An important variable that influences breastfeeding outcomes is how confident a woman feels about her ability to breastfeed successfully at an early stage. We investigated breastfeeding self-efficacy in the mothers of late preterm infants.

    METHODS: This was a prospective, comparative study that focused on mothers who had delivered babies at 34 + 0 to 36 + 6 weeks and were recruited in 2012-2015 from a neonatal intensive care unit and a postnatal ward at a Swedish university hospital. The Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) was used to psychometrically assess the mothers at 40 weeks of postmenstrual age (n = 148) and at three months of corrected age (n = 114).

    RESULTS: The BSES-SF scores were higher in the 87% of mothers that exclusively breastfed when their babies reached 40 weeks (57.1 out of 70) than those who did not (41.4, p < 0.001), indicating better self-efficacy. The figures remained higher in the 68% of exclusive breastfeeding mothers at three months of corrected age (60.9 versus 51.7).

    CONCLUSION: Self-efficacy was an important predictor of the length of breastfeeding in mothers of late preterm infants, and the BSES-SF can be used to detect low self-efficacy that could lead to early breastfeeding cessation.

  • 16.
    Gerhardsson, Emma
    et al.
    Akademiska sjukhuset, universitetssjukhus i Uppsala..
    Nyqvist, Kerstin Hedberg
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Volgsten, Helena
    Uppsala universitet.
    Hildingsson, Ingegerd
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    The Swedish Version of the Breastfeeding Self-Efficacy Scale-Short Form: Reliability and Validity Assessment2014In: Journal of Human Lactation, ISSN 0890-3344, E-ISSN 1552-5732, Vol. 30, no 3, p. 340-345Article in journal (Refereed)
    Abstract [en]

    Background: Among Swedish mothers, breastfeeding duration has been declining in recent years. An instrument for early identification of women at risk for shorter breastfeeding duration may be useful in reversing this trend. Objectives: The aims of this study were to translate and psychometrically test the Swedish version of the Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF), examine the relationship between breastfeeding self-efficacy and demographic variables, and evaluate associations with breastfeeding continuation plans in Swedish mothers. Methods: The BSES-SF was translated into Swedish using forward and back translation. The sample consisted of 120 mothers who, during the first week postpartum, came for a routine follow-up visit at the postnatal unit in a university hospital. The mothers were compared based on demographic data and their future breastfeeding plans. Results: The Cronbach’s alpha coefficient for internal consistency for the BSES-SF was 0.91 and the majority of correlation coefficients exceeded 0.3. A 1-factor solution was found that explained 46% of the total variance. There was no difference in confidence in breastfeeding between mothers with early hospital discharge and mothers who received postnatal care at the hospital. Primiparas who stayed longer at the hospital were less confident in breastfeeding than primiparas who had a shorter hospital stay. Breastfeeding mothers who planned to partially breastfeed in the near future had lower BSES-SF scores, compared to those who planned to continue exclusive breastfeeding. Conclusion: The Swedish version of the BSES-SF has good reliability, validity, and agreement with mothers’ plans regarding breastfeeding continuation and exclusivity.

  • 17.
    Hedberg Nyqvist, Kerstin
    et al.
    Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Volgsten, Helena
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Early skin-to-skin contact between healthy late preterm infants and their parents: an observational cohort study2017In: PeerJ, ISSN 2167-8359, E-ISSN 2167-8359, Vol. 5, p. e3949-Article in journal (Refereed)
    Abstract [en]

    Background Skin-to-skin contact (SSC) is an important factor to consider in the care of late preterm infants (born between 34 0/7 and 36 6/7 completed weeks of gestation). The literature suggests that SSC between preterm infants and their mothers facilitates breastfeeding. However, more studies are needed to explore potential dose-response effects between SSC and breastfeeding as well as studies that explicitly investigate SSC by fathers among late preterm infants. The aim was to investigate the duration of healthy late preterm infants’ SSC with the mother and father, respectively, during the first 48 h after birth and the associations with breastfeeding (exclusive/partial at discharged), clinical and demographic variables. Methods This was an observational cohort study in which parents to healthy late preterm infants, born between 34 5/7 and 36 6/7 completed weeks of gestation, recorded duration of SSC provided by mother and father, respectively. Demographic and clinical variables were retrieved from the medical records and were used as predictors. Multiple linear regression analysis was used to assess the association between the predictors and the outcome, SSC (hours), separately for mothers and fathers. Results The mean (standard deviation [SD]) time per day spent with SSC with mothers (n = 64) and fathers (n = 64), was 14.7 (5.6) and 4.4 (3.3) hours during the first day (24 h) after birth and 9.2 (7.1) and 3.1 (3.3) hours during the second day (24 h), respectively. Regarding SSC with mothers, no variable was significantly associated with SSC during the first day, while the mean (95% confidence interval [CI]) time of SSC during the second day was 6.9 (1.4–12.4) hours shorter for each additional kg of birthweight (p = 0.014). Concerning SSC with fathers, the mean (95% CI) time of SSC during the first day was 2.1 (0.4–3.7) hours longer for infants born at night (p = 0.015), 1.7 (0.1–3.2) hours longer for boys (p = 0.033), 3.2 (1.2–5.2) hours longer for infants born by caesarean section (p = 0.003), and 1.6 (0.1–3.1) hours longer for infants exclusively breastfed at discharge (p = 0.040). During the second day, the mean (95% CI) time of SSC with fathers was 3.0 (0.6–5.4) hours shorter for each additional kg of birthweight (p = 0.014), 2.0 (0.5–3.6) hours longer for infants born during night-time (p = 0.011), 2.9 (1.4–4.4) hours longer if the mother was primipara (p &lt; 0.001), and 1.9 (0.3–3.5) hours shorter if supplementary artificial milk feeds were given. None of the other predictors, i.e., mother’s age, gestational age, or induction of labor were significantly associated with infants’ SSC with mothers or fathers during any of the first two days after birth. Conclusion Future studies are warranted that investigate duration of SSC between late preterm infants and their parents separately and the associations with breastfeeding and other variables of clinical importance.

  • 18.
    Jörngården, Anna
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Health-related quality of life, anxiety and depression among adolescents and young adults with cancer: A prospective longitudinal study2007In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 43, no 13, p. 1952-1958Article in journal (Refereed)
    Abstract [en]

    The present study sets out to add to knowledge about the development over time of health-related quality of life (HRQL), anxiety and depression among survivors of adolescent cancer. The aim was to investigate if and how the HRQL, anxiety and depression of a group of adolescents with cancer differ from those of a reference group shortly after diagnosis, and subsequently at 6, 12 and 18 months after diagnosis. Adolescents diagnosed with cancer and a reference group randomised from the general population completed the Hospital Anxiety and Depression Scale (HADS) and the two subscales Mental Health and Vitality in the Short Form 36 (SF-36) in telephone interviews. The results indicate a steady increase in psychological well-being from the time of diagnosis, when the cancer patients’ ratings were significantly worse than those of the general population, and onwards. The differences gradually disappeared and then were reversed, resulting in the cancer group reporting significantly better HRQL and lower levels of anxiety and depression than the reference group when 1.5 years had passed since diagnosis. The adolescents faced with cancer show signs of adaptation to trauma, which can be understood in relation to the theoretical framework of posttraumatic growth as well as response shift. Future research should continue to follow this development over time, to investigate if the positive effects of the cancer experience will wear off, or if it has facilitated a permanent positive outcome.

  • 19.
    Karlsson, Anna-Malin
    et al.
    Uppsala universitet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    "Vi kan inte visa ett normalt hjärta": Kommunikativa praktiker i samband med hjärtfel hos foster2014In: Svenskans beskrivning 33 / [ed] Jan Lindström, Sofie Henricson, Anne Huhtala, Pirjo Kukkonen, Hanna Lehti-Eklund, Camilla Lindholm, Helsingfors: Finska, finskugriska och nordiska institutionen, Helsingfors universitet , 2014, p. 193-213Conference paper (Refereed)
  • 20.
    Larsson, Gunnel
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Aspects of quality of life, anxiety, and depression among persons diagnosed with cancer during adolescence: a long-term follow-up study2010In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 46, no 6, p. 1062-1068Article in journal (Refereed)
    Abstract [en]

    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.

  • 21.
    Lehmann, Vicky
    et al.
    Nederländerna.
    Grönqvist, Helena
    Uppsala universitet.
    Engvall, Gunn
    Uppsala universitet.
    Ander, Malin
    Uppsala universitet.
    Tuinman, Marrit A
    Nederländerna.
    Hagedoorn, Mariët
    Nederländerna.
    Sanderman, Robbert
    nederländerna.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 11, p. 1229-1235Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: 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. METHODS: Three, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis. RESULTS: Seven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4). CONCLUSIONS: Ten years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors’ positive views of life, sense of self, and close relationships.

  • 22.
    Mattsson, Elisabet
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Einhorn, Kim
    Uppsala universitet.
    Ljungman, Lisa
    Karolinska institutet.
    Sundström-Poromaa, Inger
    Uppsala universitet.
    Stålberg, Karin
    Uppsala universitet.
    Wikman, Anna
    Uppsala universitet.
    Women treated for gynaecological cancer during young adulthood: A mixed-methods study of perceived psychological distress and experiences of support from health care following end-of-treatment.2018In: Gynecologic Oncology, ISSN 0090-8258, E-ISSN 1095-6859, Vol. 149, no 3, p. 464-469, article id S0090-8258(18)30235-XArticle in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the prevalence and predictors of cancer-related distress in younger women treated for gynaecological cancer, and to explore women's needs and experiences of psychosocial support following end-of-treatment.

    METHODS: Data were collected from 337 gynaecological cancer survivors, 19-39years at diagnosis, using a study-specific questionnaire and the Swedish Quality Register of Gynaecologic Cancer. Predictors of distress were investigated with multivariable logistic regression analysis. Open-ended questions were analysed with content analysis.

    RESULTS: The prevalence of cancer-related distress was 85% (n=286) including fear of cancer-recurrence (n=175, 61%), anxiety (n=152, 53%), depression (n=145, 51%), fear of death (n=91, 32%), concerns regarding sexuality (n=87, 34%) and fertility (n=78, 27%), and changed body image (n=78, 27%). Multi-modal treatment (OR 2.25, 95% CI 1.13-4.49) and a history of psychological distress (OR 3.44, 95% CI 1.41-8.39) predicted cancer-related distress. The majority of women experiencing distress also reported a need for support after end-of-treatment (n=205, 71%). One-third of those receiving support reported the received support as inadequate (n=55, 34%). Eight categories described reasons for not seeking support, e.g., lacked strength to seek professional support and too busy managing every-day life and, wanted help but did not know who to turn to. Four categories described reasons for not receiving sought support e.g., found it difficult to openly express feelings, psychosocial care was under-dimensioned, insufficient and unprofessional.

    CONCLUSION: Results identify the importance of support and longer-term follow-up for young survivors of gynaecological cancer. The support needs to be organised to meet this group's specific needs.

  • 23.
    Mattsson, Elisabet
    et al.
    Uppsala universitet, Lunds universitet.
    El-Khouri, Bassam
    Ljungman, Gustaf
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Empirically derived psychosocial states among adolescents diagnosed with cancer during the acute and extended phase of survival2009In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 20, no 10, p. 1722-1727Article in journal (Refereed)
    Abstract [en]

    Patients and methods: Participants completed the Hospital Anxiety and   Depression Scale and two subscales, Vitality and Mental Health, in the   SF-36 4-8 weeks (T1) (n = 61), 6 (T2) (n = 57), 12 (T3) (n = 50), and   18 (T4) months (n = 48) after diagnosis. I-State as Object of Analysis   was used to identify a finite set of states based on three dimensions.   Cluster analysis was carried out using Ward’s method.   Results: Five states were obtained: psychosocial dysfunction (state A)   and poor (B), incomplete (C), good (D), and excellent (E) psychosocial   function. At T1, more adolescents than expected by chance were in   states A (P &lt; 0.05) and C (P &lt; 0.01) and fewer in states D (P &lt; 0.05)   and E (P &lt; 0.001). At T4, more adolescents than expected by chance were   in state E (P &lt; 0.001) and fewer in state C (P &lt; 0.05). Female gender   and being in late adolescence when diagnosed is related to worse   psychosocial function.   Conclusion: The findings provide support for subgroups of adolescents   whose level of vitality, mental health, and anxiety differ during the   acute and extended phase of survival of cancer. Clinical interventions   tailored to the level of impairment as determined by the clusters may   result in better psychosocial outcomes.

  • 24.
    Mattsson, Elisabet
    et al.
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Wickström, Maria
    Uppsala universitet.
    Nyqvist, Kerstin Hedberg
    Uppsala universitet.
    Volgsten, Helena
    Uppsala universitet.
    Healthy late preterm infants and supplementary artificial milk feeds: Effects on breast feeding and associated clinical parameters2015In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 31, no 4, p. 426-431Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: to compare the influence of supplementary artificial milk feeds on breast feeding and certain clinical parameters among healthy late preterm infants given regular supplementary artificial milk feeds versus being exclusively breast fed from birth. DESIGN: a comparative study using quantitative methods. Data were collected via a parental diary and medical records. METHODS: parents of 77 late preterm infants (34 5/7-36 6/7 weeks), whose mothers intended to breast feed, completed a diary during the infants׳ hospital stay. FINDINGS: infants who received regular supplementary artificial milk feeds experienced a longer delay before initiation of breast feeding, were breast fed less frequently and had longer hospital stays than infants exclusively breast fed from birth. Exclusively breast-fed infants had a greater weight loss than infants with regular artificial milk supplementation. A majority of the mothers (65%) with an infant prescribed artificial milk never expressed their milk and among the mothers who used a breast-pump, milk expression commenced late (10-84 hours after birth). At discharge, all infants were breast fed to some extent, 43% were exclusively breast fed. KEY CONCLUSIONS: clinical practice and routines influence the initiation of breast feeding among late preterm infants and may act as barriers to the mothers׳ establishment of exclusive breast feeding.

  • 25.
    Mattsson, Elisabet
    et al.
    Uppsala universitet, Lunds universitet.
    Lindgren, Björn
    von Essen, Louise
    Uppsala universitet.
    Are there any positive consequences of childhood cancer?: A review of the literature2008In: Acta Oecologica, ISSN 1146-609X, E-ISSN 1873-6238, Vol. 47, no 2, p. 199-206Article in journal (Refereed)
    Abstract [en]

    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.

  • 26.
    Mattsson, Elisabet
    et al.
    Uppsala universitet, Lunds universitet.
    Ringnér, Anders
    Uppsala universitet.
    Ljungman, Gustaf
    Uppsala universitet.
    von Essén, Louise
    Uppsala universitet.
    Positive and negative consequences with regard to cancer during adolescence: Experiences two years after diagnosis2007In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 16, no 11, p. 1003-1009Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The purpose was to explore negative and positive consequences of cancer during adolescence experienced two years after diagnosis. METHODS: Two years after diagnosis 38 persons, 15-21 years old, were asked two questions over the telephone: What, if anything, is bad for you due to the cancer disease? and What, if anything, is good for you due to the cancer disease? The answers were analysed by content analysis. RESULTS: Four categories of negative experiences were identified: a problematic body; unpleasant thoughts and feelings; outside the circle of friends; and difficulties with schoolwork. Six categories of positive experiences were identified: a more positive view of life; good self-esteem; knowledge and experience with regard to disease and hospital care; good relations; broader perspectives; and material gains. CONCLUSIONS: Two years after diagnosis those struck by cancer during adolescence experience not only a number of negative, but also positive, consequences of the cancer disease and its treatment.

  • 27.
    Melander Marttala, Ulla
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Fackord i samtal och texter om barns hjärtfel2017In: Svenskans beskrivning 35: Förhandlingar vid trettiofemte sammankomsten Göteborg 11-13 maj 2016 / [ed] Sköldberg, Emma, Andréasson, Maia, Adamsson Eryd, Henrietta, Lindahl, Filippa, Lindström, Sven, Prentice, Julia, Sandberg, Malin, 2017Conference paper (Refereed)
  • 28.
    Sandblom, G
    et al.
    Uppsala universitet.
    Holmberg, Lars
    Uppsala univeristet.
    Damber, J-E
    Hugosson, J
    Johansson, J-E
    Lundgren, R
    Mattsson, Elisabet
    Uppsala universitet.
    Nilsson, J
    Varenhorst, E
    Prostate-specific antigen as surrogate for characterizing prostate cancer subgroups2002In: Scandinavian Journal of Urology and Nephrology, Vol. 36, no 2, p. 106-112Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE To evaluate how serum prostate-specific antigen (PSA) levels in a population-based cohort of men with prostate cancer vary with age and intensity in the diagnostic activity and to describe the treatment selection processes associated with PSA level. MATERIAL AND METHODS All men in the Swedish National Prostate Cancer Register diagnosed during 1996-1997 were included. In 1996 the register included 19 counties, covering 61% of the Swedish male population, and in 1997 21 counties with 79% of the Swedish male population. RESULTS A total of 8328 men were registered. PSA levels were missing in 341 cases. With increasing PSA there was a shift towards more advanced and poorly differentiated tumours. PSA at diagnosis increased with age, with the exception of patients younger than 50 years who had higher PSA values. The mean logarithm of PSA correlated negatively with the percentage of localized tumours (p &lt; 0.005) and the age-adjusted incidence (p &lt; 0.05) in each respective county in 1997. PSA was higher in men receiving radiotherapy compared with those treated with radical prostatectomy as well as in the group treated with bilateral orchiectomy compared with those receiving GnRH-analogues. CONCLUSIONS If PSA is used as a surrogate measure of extent of tumour volume in a population of prostate cancer patients, our findings indicate that age distribution and differences in incidence (possibly due to variation in diagnostic activity) should be taken into account. In our cohort there was a selection process, probably in part guided by PSA level, when choosing type of curative or palliative treatment.

  • 29. Sandblom, Gabriel
    et al.
    Mattsson, Elisabet
    Nilsson, Jonas
    Damber, Jan-Erik
    Johansson, Jan-Erik
    Lundgren, Rolf
    Varenhorst, Eberhard
    Prostate cancer registration in four Swedish regions 1996: differences in incidence, age structure and management1999In: Scandinavian Journal of Urology and Nephrology, Vol. 33, no 5, p. 306-311Article in journal (Refereed)
    Abstract [en]

    Diagnostic activity varied considerably among counties, resulting in large variation in age-standardized incidence. High incidence is associated with a larger proportion of localized tumours, which, in turn, is associated with early age at diagnosis. In counties where a policy of detecting tumours early is practised, curative treatment is also given more often. Treatment of localized tumours and preference for palliative treatment seem to depend on local traditions. The lack of cytological and histopathological standards makes geographical comparisons based on tumour grade impossible.

  • 30.
    Sandblom, G
    et al.
    Universitetssjukhuset i Linköping.
    Holmberg, L
    Damber, J-E
    Hugosson, J
    Johansson, J-E
    Lundgren, R
    Mattsson, Elisabeth
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Nilsson, J
    Varenhorst, E
    Prostate-specific antigen for prostate cancer staging in a population-based register.2002In: Scandinavian Journal of Urology and Nephrology, ISSN 0036-5599, E-ISSN 1651-2065, Vol. 36, no 2, p. 99-105Article in journal (Refereed)
    Abstract [en]

    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.

  • 31.
    von Essen, Louise
    et al.
    Uppsala universitet.
    Sjödén, Per Olow
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Swedish Mothers and Fathers of a Child Diagnosed with Cancer: A Look at Their Quality of Life2004In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 43, no 5Article in journal (Refereed)
    Abstract [en]

    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.

  • 32. Wettergren, Lena
    et al.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Mode of administration only has a small effect on data quality and self-reported health status and emotional distress among Swedish adolescents and young adults2011In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 11-12, p. 1568-1577Article in journal (Refereed)
    Abstract [en]

    Aims. The aims were to investigate potential effects of mode of administration on response rate, internal consistency, completeness of data, floor and ceiling effects and interaction effects of mode of administration, gender and age on self-reported health status and emotional distress among Swedish adolescents and young adults. Design. A cross-sectional comparative study. Methods. Using a stratified quota sampling scheme, 840 adolescents and young adults (aged 13-23 years) were randomly chosen from the general population. Participants were randomised according to mode of administration, telephone interview or postal questionnaire. Results. The telephone mode resulted in a higher response rate than the postal mode and fewer men than women participated in the postal mode. Mode of administration only had a small effect on self-reports. The youngest adolescents did, in some respects, respond to the modes in a reverse pattern than the older participants. Conclusion. The findings support the use of the SF-36 and the HADS among persons 16-23 years of age. The strengths and weaknesses of a telephone and a postal mode to collect self-report data are discussed. Relevance for clinical practice. Nurses should consider the findings of this study, e.g. when using self-reports to screen for health status and emotional distress and when designing research studies.

  • 33.
    Wikman, Anna
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Hovén, Emma
    Uppsala universitet.
    Prevalence and predictors of symptoms of anxiety and depression, and comorbid symptoms of distress in parents of childhood cancer survivors and bereaved parents five years after end of treatment or a child's death.2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 7, p. 950-957Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Symptoms of anxiety and depression and their comorbidity in parents of children diagnosed with cancer, particularly later in the cancer trajectory, need further study. The aim was to investigate the prevalence and predictors of symptoms of anxiety and depression in parents of childhood cancer survivors and bereaved parents, five years after end of treatment or a child's death and to investigate comorbidity between symptoms of anxiety, depression and posttraumatic stress.

    MATERIAL AND METHODS: Participants were 132 parents (68 mothers, 64 fathers) of survivors and 37 bereaved parents (20 mothers, 17 fathers). Chi-square test and t-test were used to explore differences in symptoms of anxiety and depression. Comorbidity was explored using Pearson's correlations and Chi-square test. Multivariable hierarchical linear regressions were used to identify predictors of symptoms of anxiety and depression.

    RESULTS: In parents of survivors, 20% reported anxiety and 14% reported depression. Corresponding figures among bereaved parents were 30% and 35%. Among parents of survivors reporting clinically relevant anxiety and depression, a larger proportion were mothers than fathers. No such difference was found among bereaved parents. Symptoms of anxiety, depression and posttraumatic stress were highly correlated (all r ≥ 0.65, p < .001). Comorbid symptoms were reported by 7-11% of parents of survivors and 14-24% of bereaved parents. In multivariable analyses, more severe symptoms of depression were associated with anxiety, posttraumatic stress and distress related to previous stressful life events. Being a mother, symptoms of depression and posttraumatic stress were associated with more severe symptoms of anxiety.

    CONCLUSION: A subset of parents report clinically elevated symptoms of anxiety and depression, comorbid anxiety, depression and posttraumatic stress. Experiencing distress related to previous stressful life events as well as concurrent comorbidity were associated with more severe psychological distress at five years after end of treatment/a child's death. These results deserve further attention in research and clinical care.

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