| 1. |
- Arvidsson, Susann, 1965-, et al.
(författare)
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Adult survivors’ perceptions of their childhood and the influences of being treated for acute lymphoblastic leukaemia with allogeneic hematopoietic stem cell transplantation as a child : A phenomenographic study
- 2024
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Ingår i: European Journal of Oncology Nursing. - Oxford : Elsevier. - 1462-3889 .- 1532-2122. ; 70
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Adults who had acute lymphoblastic leukaemia (ALL) as children and were treated with allogeneic hematopoietic stem cell transplantation (aHSCT) may have been affected in their lives due to several long-term complications. From a clinical point of view, it is of interest to study how survivors describe their perceptions of their childhood today. The aim was therefore to describe how adults perceived their childhood and the influences of being treated for ALL with aHSCT as a child.Method: Semi-structured telephone interviews were undertaken with 18 adults who had been treated for childhood ALL with aHSCT and were included in a national cohort of childhood ALL survivors, diagnosed between 1985 and 2007 at an age between 0 and 17 years. A phenomenographic analysis was used.Results: Three categories emerged: Feeling different, Feeling security and Feeling guilty. The informants felt that they had been different from other children but had felt security with the healthcare professionals and in care. They felt guilty because both their siblings’ and parents’ lives had been affected, but at the same time many perceived that they and their family members had become closer to one another.Conclusions: The results emphasised that adults who had been treated for childhood ALL with aHSCT were affected both in negative and positive ways during their childhood. This indicates the importance for early psychosocial care interventions directed to children during their treatment, but also the need for person-centred psychological care in long-term outpatient clinics. © 2024 The Authors. Published by Elsevier Ltd.
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| 2. |
- Berg, Tove, et al.
(författare)
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Heart failure in childhood cancer survivors-a systematic review protocol.
- 2022
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Ingår i: Systematic reviews. - : Springer Science and Business Media LLC. - 2046-4053. ; 11:1
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Tidskriftsartikel (refereegranskat)abstract
- Over the past decades, the survival rate for childhood cancer has greatly improved. However, the risk of late cardiac complications after cancer treatment remains high. Previous studies have shown that the risk for heart failure among childhood cancer survivors is significantly higher than that observed in varying control populations. The aim of this systematic review is to identify, critically appraise, and synthesize existing population-based studies reporting on the frequency of heart failure, both the incidence and prevalence, that may develop after treatment for childhood cancer.The following databases will be searched from their inception date until May 17, 2021: MEDLINE, Embase, Scopus, CINAHL, CAB International, AMED, Global Health, PsycINFO, Web of Science, and Google Scholar. Population-based studies reporting on the incidence and/or prevalence of heart failure after the treatment of any type of childhood cancer will be included. The screening of articles, data extraction, and quality assessment will be performed independently by two reviewers. The quality and risk of bias in the included studies will be assessed by using the Effective Public Health Practice Project tool. A narrative synthesis of the extracted data will be carried out, and for studies that are sufficiently homogenous, a meta-analysis using random-effects models will be performed.This systematic review will provide a clearer picture of the epidemiology of heart failure after the treatment of childhood cancer. The collected data will be of value for future childhood cancer treatment protocols and will offer guidance for posttreatment cardiac surveillance among survivors.PROSPERO CRD42021247622 . Registered on April 28, 2021. This protocol follows the structure of the recommendation of the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P).
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| 3. |
- Olsson, Maria, 1964, et al.
(författare)
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Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations
- 2019
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 39, s. 55-61
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors. Method: A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders. Result: Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (p = 0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable. Conclusions: These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.
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| 4. |
- Olsson, Maria, 1964, et al.
(författare)
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Self-Perceived physical attractiveness in relation to scars among adolescent and young adult cancer survivors : A population-based study
- 2018
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Ingår i: Journal of Adolescent and Young Adult Oncology. - : Mary Ann Liebert. - 2156-5333 .- 2156-535X. ; 7:3, s. 358-366
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment.METHODS: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden.RESULTS: In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars.CONCLUSIONS: The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.
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| 5. |
- Olsson, Maria, 1964, et al.
(författare)
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Sexual function in adolescent and young adult cancer survivors-a population-based study
- 2018
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Ingår i: Journal of cancer survivorship : research and practice. - : Springer Science and Business Media LLC. - 1932-2267 .- 1932-2259. ; 12:4, s. 450-459
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Tidskriftsartikel (refereegranskat)abstract
- Previous research has established that treatments for cancer can result in short- and long-term effects on sexual function in adult cancer patients. The purpose was to investigate patient-reported physical and psychosexual complications in adolescents and young adults after they have undergone treatment for cancer.In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors (15-29years) and validated by professionals from oncology units, midwives, epidemiologists, and statisticians. The topics covered in the questionnaire were psychosocial health, body image, sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to adolescent and young adult cancer survivors and matched controls in Sweden.In this study, adolescent and young adult cancer survivors (15-29years) showed low satisfaction regarding sexual function compared to controls (P<0.01). Female adolescent and young adult cancer survivors had a statistically significant lower frequency of orgasm during sexual activity than the controls (P<0.01). Male adolescent and young adult cancer survivors had statistically significant lower sexual desire than the controls (P=0.04).We found that adolescent and young adult cancer survivors perceived themselves as being less satisfied with their sexual function than matched population-based controls.Adolescent and young adult cancer survivors need psychological rehabilitation support from the health care profession during and after cancer treatment to help them to reduce their reported poor sexual function to enhance a good sexual quality of life.
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| 6. |
- Aili, Katarina, PhD, 1980-, et al.
(författare)
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Health-related quality of life in adults treated for paediatric acute lymphoblastic leukaemia: a cross-sectional and longitudinal cohort study
- 2022
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Ingår i: Bmj Open. - London : BMJ. - 2044-6055. ; 12:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Acute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship. Methods and analysis This cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience. Ethics and dissemination The study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.
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| 7. |
- Björk-Eriksson, Thomas, 1960, et al.
(författare)
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Mortality Among Pediatric Patients With Acute Lymphoblastic Leukemia in Sweden From 1988 to 2017
- 2022
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Ingår i: JAMA network open. - : American Medical Association (AMA). - 2574-3805. ; 5:11
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Tidskriftsartikel (refereegranskat)abstract
- Importance: Acute lymphoblastic leukemia (ALL) constitutes 20% to 30% of all pediatric cancers. The 5-year overall survival among pediatric patients with ALL in high-income countries such as Sweden is currently more than 90%, but long-term unselected nationwide mortality data and mortality data in relation to the general population are lacking. Objective: To compare mortality between pediatric patients with ALL and the general population during a 30-year period in Sweden and to assess the incidence of ALL in Sweden. Design, Setting, and Participants: This cohort study included pediatric patients (aged <18 years) with a morphologically verified ALL diagnosis in the Swedish Cancer Register and/or at least 2 ALL diagnoses in the Swedish National Patient Register between January 1, 1988, and December 31, 2017. Data were cross-linked to the Swedish Cause of Death Register. Data were analyzed from May 2019 to January 2022. Main Outcomes and Measures: The main outcomes were mortality among patients with ALL compared with that in the general population and mortality in different subgroups within the cohort. Standardized mortality ratios (SMRs) were calculated using the general Swedish population as a reference. Within-cohort survival analyses were performed. Results: A total of 2397 patients (1354 [56%] male; mean [SD] age at diagnosis, 6.1 [4.7] years) were included in the study. The mean (SD) incidence of pediatric ALL during the study period was 4.11 (0.60) cases per 100 000 persons per year (females, 3.68 [0.65] cases per 100 000 persons per year; males, 4.52 [0.81] cases per 100 000 persons per year; P<.001). The observed number of deaths among pediatric patients with ALL was 409 vs the 9.5 deaths expected in the general population, resulting in an overall SMR of 43.1 (95% CI, 39.0-47.5); females had a higher SMR than males (57.8 [95% CI, 49.5-67.2] vs 34.5 [95% CI, 32.0-41.4]; P<.001). Analysis within the cohort showed a continued decrease in survival throughout the 30-year follow-up. The association between calendar year of ALL diagnosis, corresponding with different ALL treatment protocols, and mortality showed the lowest survival for the 1988-1991 group and the highest for the 2008-2017 group (χ2=20.3; P<.001). Conclusions and Relevance: In this cohort study, a consistently high SMR was seen among pediatric patients with ALL. Within the ALL cohort, survival evolved to a similar extent as in the young general population of Sweden. Furthermore, survival among patients with ALL decreased throughout the whole follow-up period without any trend difference after the 5-year follow-up time point. The changes in ALL treatment protocols were associated with overall improved absolute survival over time.
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| 8. |
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| 9. |
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| 10. |
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| 11. |
- Ek, Torben, 1963, et al.
(författare)
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Proinflammatory cytokines mediate the systemic inflammatory response associated with high-dose cytarabine treatment in children.
- 2001
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Ingår i: Medical and pediatric oncology. - 0098-1532. ; 37:5, s. 459-64
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Tidskriftsartikel (refereegranskat)abstract
- Treatment with high-dose cytarabine (1-beta-D-arabinofuranosylcytosine) is often associated with an acute febrile reaction sometimes including abdominal pain, myalgia, and rash. The similarity of these symptoms to those caused by hypersecretion of cytokines in the systemic inflammatory response syndrome (SIRS) prompted us to investigate the plasma levels of proinflammatory cytokines during treatment of children with high-dose cytarabine.
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| 12. |
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| 13. |
- Jarfelt, Marianne, 1962, et al.
(författare)
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Body composition in young adult survivors of childhood acute lymphoblastic leukaemia.
- 2005
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Ingår i: European journal of endocrinology / European Federation of Endocrine Societies. - : Oxford University Press (OUP). - 0804-4643. ; 153:1, s. 81-9
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Obesity is frequently reported in patients treated for childhood leukaemia. Obesity, particularly abdominal obesity, is one of the main characteristics of the metabolic syndrome and a risk factor for cardiovascular disease and non-insulin-dependent diabetes mellitus (NIDDM). DESIGN: All patients treated for acute lymphoblastic leukaemia (ALL) before the onset of puberty in the region of western Sweden, between 1973 and 1985, and in first remission, were included. 35 out of 47 patients aged 20-32 years participated. 19 patients had received cranial radiotherapy, and the median follow-up time was 20 years. The focus of this report was to study body composition and signs of the metabolic syndrome and correlate the findings to spontaneous growth hormone (GH) secretion. METHODS: Body composition was assessed using dual-energy X-ray absorbtiometry (DEXA). We analyzed serum concentrations of insulin, glucose, leptin and lipids. RESULTS: No patient was obese according to World Health Organization criteria (body mass index, BMI > or = 30 kg/m2) but one-third were overweight (BMI 25-29.9 kg/m2). The maximal GH peak during 24 h (GHmax) was correlated to percentage of total body fat (r = -0.42; P = 0.017), trunk fat (r = -0.5; P = 0.005) and fat-free mass (r = 0.42; P = 0.017). GHmax was also correlated to s-triglycerides (r = -0.54; P = 0.001), low-density lipoprotein-cholesterol (r = -0.382; P = 0.024) and high-density lipoprotein-cholesterol (r = 0.45; P = 0.007). CONCLUSIONS: We found little effect on BMI but an increased percentage of total body fat, especially trunk fat, and a tendency for an unfavourable lipid profile in adult survivors of childhood leukaemia. These findings were related to low endogenous GH secretion due to cranial irradiation.
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| 14. |
- Jarfelt, Marianne, 1962, et al.
(författare)
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Bone mineral density and bone turnover in young adult survivors of childhood acute lymphoblastic leukaemia
- 2006
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Ingår i: Eur J Endocrinol. ; 154:2, s. 303-9
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Treatment for childhood leukaemia induces many risk factors for development of decreased bone mineral density (BMD). Physical activity is also known to affect BMD. The aim was to study BMD and markers of bone turnover in a well-defined group of survivors of acute lymphoblastic leukaemia (ALL) who had all reached final height as well as peak bone mass, taking both previous treatment and physical activity into consideration. DESIGN: All patients treated for ALL before the onset of puberty in the region of western Sweden, between 1973 and 1985, in first remission were included. Thirty-five out of forty-seven patients aged 20-32 years participated. Nineteen patients had received cranial radiotherapy, and the median follow-up time was 20 years. METHODS: BMD was assessed using dual-energy X-ray absorbtiometry (DEXA). Serum concentrations of markers of bone turnover were analysed. Physical performance was measured using a performance exercise capacity stress test. RESULTS: BMD was slightly reduced in lumbar spine (-0.4 SD), but not in femoral neck or total body. BMD in femoral neck was correlated to physical performance and dose of corticosteroid, but no correlation was found with spontaneous growth hormone (GH) secretion. Markers of bone turnover were also correlated to physical performance, but not to GH secretion. CONCLUSIONS: Physical fitness seems to be the most important factor in developing and preserving normal bone mineral density in ALL patients. We propose that lifestyle education promoting physical activity is encouraged from an early point in time for these patients.
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| 15. |
- Jarfelt, Marianne, 1962
(författare)
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Childhood acute lymphoblastic leukaemia. Late effects in young adult survivors
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Acute lymphoblastic leukaemia (ALL) is the most common malignancy in children. The 5-year survival rate has gradually increased from 5% in early 1970s to over 80% today. Until now most patients have been discharged from further follow up after puberty. The general aim of this thesis was to investigate long-term side effects in a homogenous group of young adult survivors of childhood ALL.Thirty-five young adults in the age 20-32 years, who had been treated for ALL before puberty, were investigated. They had all received chemotherapeutic treatment and corticosteroids. Nineteen had received a low dose prophylactic radiotherapy to the central nervous system (18-24 Gy).In spite of little or no effect on final height we found low spontaneous GH secretion during 24-hours in 50% of the cranially irradiated patients. Low serum levels of IGF-I did not identify patients with low GH secretion. One third of the patients were overweight (BMI 25-29.9 kg/m2), but no patient was obese according to WHO criteria (BMI ¡Ý 30 kg/m2). The maximal GH peak correlated to percentage of total body fat, trunk fat and fat free mass. Reduced GH secretion was correlated with unfavourable serum lipid levels. Thirty-seven percent fulfilled one or two criteria for the metabolic syndrome although no patient had the complete syndrome by definition. Bone mineral density (BMD) was slightly reduced in lumbar spine (-0.4 SD). BMD and markers of bone turnover in femoral neck were correlated to physical performance but not to spontaneous GH secretion. Twenty-three patients who all had received anthracyclines in comparably low doses were also investigated with exercise stress echocardiography and compared with 12 healthy controls. The results demonstrated subclinical, left ventricular systolic dysfunction detected at stress, in 50% of the patients. The most marked difference was in ejection fraction at stress; 10 out of 23 patients reduced their ejection fraction at stress compared with at rest; this was not found in any of the controls. Conclusions. In this study with very long follow up in a homogenous cohort of seemingly healthy adult ALL survivors, we found reasons for future follow up. The main findings are risk of GH deficiency in cranially irradiated patients and risk of anthracycline-induced systolic cardiac dysfunction and other metabolic risk factors. Furthermore, we propose that lifestyle education promoting physical activity is encouraged from an early point in time for ALL patients to prevent obesity and impaired bone mineral density.
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| 16. |
- Jarfelt, Marianne, 1962, et al.
(författare)
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Exercise echocardiography reveals subclinical cardiac dysfunction in young adult survivors of childhood acute lymphoblastic leukemia
- 2007
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Ingår i: Pediatr Blood Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 49:6, s. 835-40
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Anthracyclines (AC) have contributed significantly to increased survival rate in acute lymphoblastic leukemia (ALL), although the use of these drugs is limited due to cardiotoxicity. The aim was to evaluate heart muscle function in asymptomatic adult survivors of ALL treated in early childhood in relation to the combined effects of AC and other potential cardiotoxic factors. PROCEDURE: Twenty-three young adult ALL survivors who had all received treatment with median 120 (120-400) mg AC/m(2) before the onset of puberty were examined median 21 years after remission and compared with 12 healthy controls. Basal echocardiography including two-dimensional (2D) M-mode and Doppler examination was performed, followed by a maximal exercise stress test and stress echocardiography immediately after stress test and after 5 min recovery. RESULTS: We found significant differences in systolic function between patients and controls at maximal exercise despite absence of reported symptoms from the patients. The most marked difference was in ejection fraction at stress 59.5% (32.6-81.1) and 77.3% (66.2-85.3), respectively (P < 0.00006). Ten out of 23 patients reduced their ejection fraction at stress compared with at rest; this was not found in any of the controls. Cardiovascular risk factors such as GH deficiency and a high proportion of trunk fat did not have an impact on cardiac function. CONCLUSIONS: With very long follow up in a homogenous cohort of ALL survivors, we found subclinical cardiac dysfunction with exercise stress echocardiography even after low doses of AC. Pediatr Blood Cancer 2007;49:835-840. (c) 2007 Wiley-Liss, Inc.
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| 17. |
- Jarfelt, Marianne, 1962, et al.
(författare)
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Young adult survivors of childhood acute lymphoblastic leukemia: spontaneous GH secretion in relation to CNS radiation
- 2004
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Ingår i: Pediatr Blood Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 42:7, s. 582-8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Young adults who are long-term survivors of acute lymphoblastic leukaemia (ALL) in early childhood usually do well and do not have to go to regular medical checkups. Many of these survivors did receive prophylactic cranial radiotherapy during their oncological treatment. The effect of cranial irradiation on the hypothalamus is considered to be progressive. Therefore, late effects, such as reduced growth hormone (GH) secretion, may remain undetected until adulthood. PROCEDURE: Records from all patients treated for ALL before the onset of puberty in the region of West Sweden, between 1 January 1973 and 31 December 1985 were included, provided they were in first remission with a minimum follow-up time of 15 years, and a minimum age of 20. These criteria were met by 47 young adults aged 20-32 years, of whom 35 agreed to participate. We studied spontaneous GH secretion over 24 hr, IGF-I and IGFBP-3, final height and BMI. The patients had been treated according to three consecutive Swedish childhood leukaemia group protocols. The median follow-up time was 20 years, and 19 of the patients had been treated with cranial irradiation (CRT+), 16 had not (CRT-). RESULTS: CRT+ patients had significantly lower maximal peaks of GH than CRT- patients. Fifty percent of the CRT+ patients had a GH(max) below the cut-off level (3.3 microg/l), for GH treatment. CRT- patients all had GH(max) levels considered within the normal range. Final height of all the patients, except one CRT+ women, was in the range of expected midparental height, the median loss in final height in the CRT+ patients was 0.8 standard deviation (SD). No patient in this study was obese by definition (BMI <30 kg/m(2)). IGF-I and IGFBP-3 concentrations did not correlate to variations in spontaneous GH secretion in these patients. CONCLUSIONS: In spite of the little effect on final height, we found impaired spontaneous GH secretion in 79% of young adults 20-32 years of age, and GH deficiency (GHD) in 47% after low-dose cranial irradiation in early childhood. The consequences of this low-GH secretion need to be investigated.
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| 18. |
- Jess, Laura, 1989, et al.
(författare)
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Adult childhood cancer survivors' perceptions of factors that influence their ability to be physically active
- 2023
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Ingår i: Supportive Care in Cancer. - : SPRINGER. - 0941-4355 .- 1433-7339. ; 31:7
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Studies indicate that adult childhood cancer survivors do not achieve recommended physical activity levels. A deeper understanding of factors that influence their ability to be physically active is essential to identify individuals in need of support. The aim was to explore factors that influence adult childhood cancer survivor's ability to be physically active. Method Semi-structured interviews were conducted from June to October 2020 with 20 adult childhood cancer survivors with a median age of 31 (min-max 20-47) years. Interviews were transcribed verbatim and analyzed with qualitative content analysis. Results Four main categories: "The impact of environmental factors," "Personal factors of importance," "Consequences of the treatment or disease," and "The impact of support from healthcare" and 10 sub-categories, were identified. Participants described how family habits and encouragement from others influenced their present ability to be physically active. Experienced benefits of physical activity were described as a facilitator for current physical activity while suffering from late complications was identified as a barrier. Participants highlighted the importance of specific and individualized physical activity recommendations. Conclusion This study includes adult childhood cancer survivors several years after completion of treatment, hence highlighting the importance for support both during treatment and follow-up to sustain their physical activity. Healthcare providers need to identify individuals suffering from late complications, even several years after treatment; provide individualized physical activity recommendations; and educate families and schools about the importance of physical activity in childhood cancer survivorship.
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| 19. |
- Jess, Laura, 1989, et al.
(författare)
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Reliability and validity of self-report questions for assessing levels of physical activity and sedentary time in adult childhood cancer survivors
- 2024
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Ingår i: BMC SPORTS SCIENCE MEDICINE AND REHABILITATION. - : BMC. - 2052-1847. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundRegular physical activity and limited sedentary time are recommended for adult childhood cancer survivors. The Swedish National Board of Health and Welfare designed a questionnaire to assess levels of physical activity (BHW-Q), including two questions: one on vigorous physical activity (BHW-Q VPA) and one on moderate physical activity (BHW-Q MPA). Furthermore, a single-item question was developed to measure sedentary time (SED-GIH-Q). These questions are recommended for clinical practice and have been found valid for the general population but have so far not been tested in adult childhood cancer survivors. The aim of the study was to assess test-retest reliability, agreement and criterion-related validity of the BHW-Q and the SED-GIH-Q in adult childhood cancer survivors.MethodA non-experimental methodological study. In total 60 participants (50% women), median age 28 (min-max 18-54) years were included at the Long-Term Follow-Up Clinic at Sahlgrenska University Hospital. Participants were instructed to wear an accelerometer for seven days, and to answer the BHW-Q and the SED-GIH-Q before and after the seven days. Test-retest reliability and criterion-related validity comparing the BHW-Q and SED GIH-Q with accelerometer data were calculated with weighted Kappa (k) (agreement) and by using Spearman ' s rho (r) (correlation).ResultsTest-retest reliability regarding the SED-GIH-Q showed a high agreement (k = 0.88) and very strong correlation (r = 0.93), while the BHW-Q showed a moderate agreement and moderately strong correlation, BHW-Q VPA (k = 0.50, r = 0.64), BHW-Q MPA (k = 0.47, r = 0.58). Both the agreement and the correlation of the criterion-related validity were interpreted as fair for the BHW-Q VPA (k = 0.29, r = 0.45), while the agreement for BHW-Q MPA was interpreted as low (k = 0.07), but the correlation as fair (r = 0.37). The agreement of the SED-GIH-Q (k = 0.13) was interpreted as low and the correlation as poor (r = 0.26).ConclusionThese simple questions assessing physical activity and sedentary time can be used as screening tools in clinical practice to identify adult childhood cancer survivors in need of support to increase physical activity level. Further development is needed on the design of a sufficiently valid question measuring sedentary time.
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| 20. |
- Järvholm, Stina, et al.
(författare)
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INFLUENCE OF FERTILITY ON FAMILY PLANNING DECISIONS AMONG MIDDLEAGED SURVIVORS OF CHILDHOOD CANCER: A QUALITATIVE STUDY
- 2020
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Ingår i: Journal of Cancer Rehabilitation (EDISCIENCES). - 2704-6494. ; 3, s. 5-13
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Tidskriftsartikel (refereegranskat)abstract
- Background As the number of childhood cancer survivors increases, there is a need to affront associated issues in adulthood such as anxiety, depression, and infertility. The aim of this qualitative study was to examine how childhood cancer survivors at the end of their fertile period were informed about fertility earlier in life and to investigate how this information influenced family planning decisions during adulthood. Methods The study included childhood cancer survivors in western Sweden ages 37–45 years identified from the Childhood Cancer Registry. Ten women and eight men ultimately participated in the study. Participants had been treated for cancer at a median age of 14 years (range, 2.5–17.5 years) and the median time since diagnosis was 26.0 years (range, 21.0–44.5 years). The study design consisted of a semi-structured interview and thematic analysis. Results A master theme that emerged from interviews was A long and uncertain road, which was divided into three underlying subthemes: Pictures of fertility e.g., from healthcare providers or parents; Experience of fertility e.g., searching as an adult, feeling like everyone else, not for me; and Emotions and fertility e.g., better not to think about it, cancer will affect my child. Women scored consistently lower than men on questionnaires regarding quality of life. Conclusion Most participants felt that they received insufficient information about fertility after cancer. The present study also highlighted a lack of support for cancer survivors into adulthood, which affected their psychological well-being and their inclination to become parents themselves.
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| 21. |
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| 22. |
- Nilsson, Sofia, et al.
(författare)
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A survey of ovarian reserve and quality of life in female survivors of pediatric cancer.
- 2022
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Ingår i: Acta obstetricia et gynecologica Scandinavica. - : Wiley. - 1600-0412 .- 0001-6349. ; 101:1, s. 84-93
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Tidskriftsartikel (refereegranskat)abstract
- Childhood cancer is rare; the incidence in Sweden is approximately 16 new cases/100000 children each year. Reduced reproductive function and fertility are well-known side effects of cancer treatment. Anti-Müllerian hormone (AMH) has been shown to correlate well with antral follicle count in healthy women but is currently not recommended as the primary surveillance modality for evaluation of premature ovarian insufficiency in this patient group. Psychological wellbeing related to fertility could affect quality of life and should be included in long-term follow-up. The aim of the study is to present the baseline data from inclusion for a prospective follow-up study of fertility surveillance where both medical and psychological aspects of fertility in female childhood cancer survivors are considered.These are the first results from this longitudinal follow-up cohort study. Female adolescent and young adult survivors of pediatric cancer in Western Sweden were included from January 2016 to December 2018, a total of 54 participants. Median age at inclusion was 21 (15-29) years and median age at cancer diagnosis was 10 (1-17) years. AMH levels, antral follicle count, and data on fertility were recorded at inclusion and will be prospectively followed up. The study includes questionnaires and interviews concerning quality of life. This study is planned to continue until the participants reach the age of 40years.Eighteen of 54 (33%) participants had AMH levels below 1.0µg/L and were considered to have high or very high risk of infertility. Median AMH level was 2.50µg/L. Six women had immediate need of oocyte cryopreservation. Psychological assessment showed that more than one-third of participants (n=20) had elevated anxiety scores.One-third of female survivors of pediatric cancer in the study had high risk of low ovarian reserve, measured by a combination of AMH and antral follicle count, and many had signs of anxiety. The longitudinal study could contribute to better knowledge in the changes of AMH over time for this patient group. Psychological follow-up with questionnaires and interviews evaluating signs of depression and anxiety may serve as a model for future screening programs.
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| 23. |
- Nilsson, Sofia, et al.
(författare)
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EXPERIENCES OF COMMUNICATION AND INFORMATION FROM HEALTH CARE STAFF REGARDING REPRODUCTIVE HEALTH: A QUALITATIVE STUDY OF FEMALE CHILDHOOD CANCER SURVIVORS IN SWEDEN
- 2024
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Ingår i: Journal of Cancer Rehabilitation. - 2704-6494. ; 7, s. 53-56
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Tidskriftsartikel (refereegranskat)abstract
- Background With increasing number of childhood cancer survivors, there is a growing population of adult survivors that reach reproductive age. Long-term side effects of cancer treatment can include damage to the reproductive organs and lead to premature ovarian failure. The purpose of the study was to examine female childhood cancer survivors’, participating in long-term follow-up, experiences of communication and information regarding fertility and reproductive health outcomes. We also aimed to investigate how they experienced the transition from pediatric to adult health services. Methods Participants for the study were all part of a longitudinal project, identified through the Long-Term Follow-Up Clinic at the Oncology Department at Sahlgrenska University Hospital, Sweden. Fifty-four female childhood cancer survivors treated with chemotherapy and/or radiotherapy before 18 years of age were included between 2016 and 2018. During the years 20182022, twenty-five of the participants reached the age of 25 and were invited to conduct a semi-structured interview. Twenty-two agreed to participate. The interview includes questions about fertility, collaboration with healthcare and communication regarding reproductive options when diagnosed with cancer. Interview data was analysed inductively using a thematic analysis. Results The analysis of the data resulted in three main themes; (1) Communication challenges, (2) Information about potential infertility and (3) Follow-up – a broader perspective, with a total of 9 subthemes. Many of the women expressed lack of information regarding reproductive health and a disappointment in their follow-up. Conclusion It is evident that the young women have felt a lack of information regarding fertility, reproductive health outcomes and options after their cancer treatment. The results of our study also indicate that transition from pediatric health care to adult health care needs to be facilitated and supported.
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| 24. |
- Olsson, Daniel S, 1983, et al.
(författare)
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Tumour recurrence and enlargement in patients with craniopharyngioma with and without GH replacement therapy during more than 10 years of follow-up.
- 2012
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Ingår i: European journal of endocrinology. - 1479-683X. ; 166:6, s. 1061-8
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Tidskriftsartikel (refereegranskat)abstract
- Most patients who have been treated for craniopharyngioma (CP) are GH deficient (GHD). GH replacement therapy (GHRT) may stimulate tumour regrowth; and one of the concerns with long-term GHRT is the risk of tumour progression. Therefore, the objective was to study tumour progression in CP patients on long-term GHRT.Case-control study.The criteria for inclusion of cases were: i) GHD caused by CP; ii) GHRT >3 years; and iii) regular imaging. This resulted in 56 patients (mean age at diagnosis 25±16 years) with a mean duration of GHRT of 13.6±5.0 years. As controls, 70 CP patients who had not received GHRT were sampled with regard to follow-up, gender, age at diagnosis and initial radiation therapy (RT).The 10-year tumour progression-free survival rate (PFSR) for the entire population was 72%. There was an association (hazard ratio, P value) between PFSR and initial RT (0.13, 0.001) and residual tumour (3.2, 0.001). The 10-year PFSR was 88% for the GHRT group and 57% for the control group. Substitution with GHRT resulted in the following associations to PFSR: GHRT (0.57, 0.17), initial RT (0.16, <0.001), residual tumour (2.6, <0.01) and gender (0.57, 0.10). Adjusted for these factors, the 10-year PFSR was 85% for the GHRT group and 65% for the control group.In patients with CP, the most important prognostic factors for the PFSR were initial RT and residual tumour after initial treatment. Long-term GHRT did not affect the PFSR in patients with CP.
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| 25. |
- Olsson, Maria, 1964, et al.
(författare)
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Experiences of teenagers and young adults treated for cancer in Sweden.
- 2015
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Ingår i: European journal of oncology nursing : the official journal of European Oncology Nursing Society. - : Elsevier BV. - 1532-2122 .- 1462-3889. ; 19:5, s. 575-581
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Tidskriftsartikel (refereegranskat)abstract
- Approximately 600 teenagers and young adults, TYAs(ages 15-29), are newly diagnosed with cancer in Sweden every year and treated in many different units. The knowledge about TYAs is limited and there might be a need for a new approach in the care for this particular age group. The purpose of this study was to identify requirements TYAs in Sweden acknowledge as important to them.
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