Adult childhood cancer survivors' perceptions of factors that influence their ability to be physically active.

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. TRIAL REGISTRATION: This research project was registered in the Swedish National Database of Research and Development, identifier 273320, December 6, 2019 ( https://www.researchweb.org/is/vgr/project/273320 ).

Neuropsychological functioning in childhood cancer survivors following cranial radiotherapy - results from a long-term follow-up clinic.

Treatment of malignant childhood posterior fossa tumors (CPFT) often includes surgical resection and craniospinal radiotherapy (CSI). Nasopharyngeal tumors in childhood (CNPHT) are often treated with surgery and radiotherapy (RT), leading to incidental brain irradiation. RT to the developing brain is associated with risks for cognitive impairments. We studied cognitive functioning, health-related quality of life (HRQOL), fatigue, and psychological distress, in adult survivors of CPFT and CNPHT, representing two groups, which had received high and low radiation dose-exposure to the brain, respectively. Cognitive tests were used to compare CPFT (n = 12) and CNPHT (n = 7) survivors to matched healthy controls (n = 28). HRQOL data was compared to the general population (GP) (n = 1415-1459). Average follow-up was 23 (CPFT) and 19 years (CNPHT). CPFT survivors had significant deficits in all cognitive domains. CNPHT survivors showed results below the control group but differed statistically only on one executive test. HRQOL-ratings indicated that both groups had similar self-reported cognitive problems. CPFT survivors reported more emotional problems and fatigue. Anxiety was seen in both CPFT and CNPHT survivors. This study confirmed long-term cognitive sequelae after RT in adult survivors of CPFT,and possible RT-induced cognitive deficits in adult CNPHT survivors.

A survey of ovarian reserve and quality of life in female survivors of pediatric cancer.

INTRODUCTION: Childhood cancer is rare; the incidence in Sweden is approximately 16 new cases/100 000 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. MATERIAL AND METHODS: 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 40 years. RESULTS: Eighteen of 54 (33%) participants had AMH levels below 1.0 µg/L and were considered to have high or very high risk of infertility. Median AMH level was 2.50 µg/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. CONCLUSIONS: 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.

Hearing Status in Survivors of Childhood Acute Myeloid Leukemia Treated With Chemotherapy Only: A NOPHO-AML Study.

BACKGROUND: As more children survive acute myeloid leukemia (AML) it is increasingly important to assess possible late effects of the intensive treatment. Hearing loss has only sporadically been reported in survivors of childhood AML. We assessed hearing status in survivors of childhood AML treated with chemotherapy alone according to 3 consecutive NOPHO-AML trials. PROCEDURE: A population-based cohort of children treated according to the NOPHO-AML-84, NOPHO-AML-88, and NOPHO-AML-93 trials included 137 eligible survivors among whom 101 (74%) completed a questionnaire and 99 (72%) had otologic and audiologic examination performed including otoscopy (72%), pure tone audiometry (70%), and tympanometry (60%). Eighty-four of 93 (90%) eligible sibling controls completed a similar questionnaire. RESULTS: At a median of 11 years (range, 4 to 25) after diagnosis, hearing disorders were rare in survivors of childhood AML and in sibling controls, with no significant differences. None had severe or profound hearing loss diagnosed at audiometry. Audiometry detected a subclinical hearing loss ranging from slight to moderate in 19% of the survivors, 5% had low-frequency hearing loss, and 17% had high-frequency hearing loss. CONCLUSIONS: The frequency of hearing disorders was low, and hearing thresholds in survivors of childhood AML were similar to background populations of comparable age.

Is it possible to cure childhood acute myeloid leukaemia without significant cardiotoxicity?

Since cardiotoxicity is a life threatening late effect, a reduction of cardiotoxicity in the treatment of acute myeloid leukaemia (AML) is essential. This review is a compilation of the current knowledge about cardiotoxicity after AML treatment and of how future directions in treatment may affect its incidence. A total of six studies concerning AML and cardiotoxicity were identified. The incidence of late subclinical cardiotoxicity varied between 1·3 and 15·3%, and late clinical cardiotoxicity varied between 1·3 and 9·3%. Cumulative dose of anthracyclines (ACs) and history of relapse were the most common risk factors identified. No conclusions could be drawn about new, potentially less toxic ACs. Differences in treatment data and variations in study populations made comparisons uncertain. The echocardiographic techniques used in the majority of the studies are inferior to more modern echocardiographic methods. This decreases reproducibility and may increase the risk of overestimation of cardiotoxicity. In summary, AML cannot be cured today without ACs. However, some ACs may cause less cardiotoxicity than others. Furthermore there is currently no consensus on equipotent doses of ACs and risk factors for cardiotoxicity. Further research including randomized trials is needed to evaluate whether or not the potentially less cardiotoxic agents fulfil their promise.

Cardiac function in survivors of childhood acute myeloid leukemia treated with chemotherapy only: a NOPHO-AML study.

OBJECTIVES: We report cardiac function of patients treated for Childhood acute myeloid leukemia with chemotherapy only according to three consecutive Nordic protocols. METHODS: Ninety-eight of 138 eligible patients accepted examination with standardized echocardiography. Results were compared with age- and sex-matched controls. RESULTS: The median age was 3 yr at diagnosis (range 0-15), and the median time from diagnosis to study was 11 yr (4-25). All but one patient had received doxorubicin and 90% had received mitoxantrone. The median cumulative dose of daunorubicin equivalents was 300 mg/m(2) (210-525). Left ventricular fractional shortening (LVFS) and ejection fraction (LVEF) were lower in patients than in controls (32.6% (SD 4.0) vs. 35.2% (SD 3.4), P = 0.002 and 59.9% (SD 5.5) vs. 64.2% (SD 4.4), P = 0.001). The myocardial performance index (MPI) was higher in patients than in controls (0.32 (SD 0.081) vs. 0.26 (SD 0.074), P < 0.0001). Cumulative dose of doxorubicin but not mitoxantrone was related to lower LVFS (P = 0.037) and LVEF (P = 0.016). Longer follow-up was associated with lower LVFS (P = 0.034). Higher MPI was associated with young age at diagnosis (P = 0.04) and longer follow-up (P = 0.031). CONCLUSIONS: In this study, most patients had cardiac function within normal limits and reported very few cardiac symptoms. However, compared with healthy controls, they had significantly reduced left ventricular function.

Renal, gastrointestinal, and hepatic late effects in survivors of childhood acute myeloid leukemia treated with chemotherapy only--a NOPHO-AML study.

BACKGROUND: We investigated the spectrum, frequency, and risk factors for renal, gastrointestinal, and hepatic late adverse effects in survivors of childhood acute myeloid leukemia (AML) without relapse treated with chemotherapy alone according to three consecutive AML trials by the Nordic Society of Pediatric Hematology and Oncology (NOPHO). METHODS: A population-based cohort of children treated for AML according to the NOPHO-AML-84, -88, and -93 trials included 138 eligible survivors of whom 102 (74%) completed a questionnaire and 104 (75%) had a clinical examination and blood sampling performed. Eighty-five of 94 (90%) eligible sibling controls completed a similar questionnaire. Siblings had no clinical examination or blood sampling performed. RESULTS: At a median of 11 years (range 4-25) after diagnosis, renal, gastrointestinal, and hepatic disorders were rare both in survivors of childhood AML and in sibling controls, with no significant differences. Ferritin was elevated in 21 (21%) AML survivors but none had biochemical signs of liver damage. Viral hepatitis was present in three and cholelithiasis in two AML survivors. One adult survivor had hypertension, two had slightly elevated systolic blood pressure, and eight survivors had slightly elevated diastolic blood pressure. These persons all had normal creatinine and cystatin C levels. Marginal abnormalities in potassium, magnesium, calcium, or bicarbonate levels were found in 34 survivors. CONCLUSION: Survivors of childhood AML treated with chemotherapy only experienced few renal, gastrointestinal, and hepatic late effects.

Reliability and validity of self-report questions for assessing levels of physical activity and sedentary time in adult childhood cancer survivors.

BACKGROUND: Regular 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. METHOD: A 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). RESULTS: Test-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). CONCLUSION: These 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. TRIAL REGISTRATION: This research project was registered in the Swedish National Database of Research and Development; identifier 275251, November 25, 2020. https://www.researchweb.org/is/vgr/project/275251 .

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.

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.

Pubertal development and fertility in survivors of childhood acute myeloid leukemia treated with chemotherapy only: a NOPHO-AML study.

BACKGROUND: More than 60% of children with acute myeloid leukemia (AML) become long-term survivors. Most are cured using chemotherapy without hematopoietic stem cell transplantation (HSCT). We report on pubertal development and compare self-reported parenthood among AML survivors and their siblings. PROCEDURE: We included 137 children treated for AML according to the Nordic Society of Pediatric Hematology and Oncology (NOPHO)-AML-84, -88, and -93 trials, who were alive by June 2007. Patients with relapse or treated with HSCT were excluded. AML survivors participated in a physical and biochemical examination (n = 102) and completed a questionnaire (n = 101). One of their siblings completed an identical questionnaire (n = 84). RESULTS: At a median follow-up of 11 years (range 5-25) after diagnosis of AML the survivors (median age 16 years, range 5-36) were either prepubertal or had entered puberty normally. Serum levels of FSH, LH, testosterone, estradiol, sex hormone binding globulin (SHBG), inhibin A and B, and testicular volumes were within normal ranges. Anti-Müllerian hormone (AMH) levels were decreased in 5 of 40 postpubertal females. Mean reported age at menarche was 13.1 (range 11-17) years. Among survivors 15 years of age or older 31% of females reported pregnancies and 9% of males reported pregnancies in their partners, rates comparable with the frequency reported by their siblings. CONCLUSIONS: Most AML survivors treated with chemotherapy had normal pubertal development and fertility, however, AMH levels were decreased in 13% of postpubertal females. Longer follow-up is necessary to evaluate possible risk of premature ovarian failure.

[Long-term follow up after childhood cancer - during childhood and adult life]. / Behandling för barncancer ger risk för sena komplikationer.

In Sweden, approximately 350 children and teenagers up to 18 years of age are diagnosed with cancer each year. The survival rate is high, above 80%, but the majority of those who survive will experience at least one late complication. The risk of late complications after treatment are mainly related to cumulative dose exposure of specific chemotherapeutic agents as well as radiation doses to certain organs at risk. A Swedish national working group has developed a national care program with recommendations for follow-up during childhood and adult life after childhood cancer treatment. Besides specific follow-up recommendations, the long-term follow-up care program describes both the organization needed to ensure adequate information to patients during their teenage years as well as the basic resources needed to provide a proper follow-up service for adults who survived childhood cancer.

Health-related quality of life in adults treated for paediatric acute lymphoblastic leukaemia: a cross-sectional and longitudinal cohort study.

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.

Heart failure in childhood cancer survivors-a systematic review protocol.

BACKGROUND: 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. METHOD: 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. DISCUSSION: 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. SYSTEMATIC REVIEW REGISTRATION: 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).

Mortality Among Pediatric Patients With Acute Lymphoblastic Leukemia in Sweden From 1988 to 2017.

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.

Quality of health in survivors of childhood acute myeloid leukemia treated with chemotherapy only: a NOPHO-AML study.

BACKGROUND: More than 60% of children with acute myeloid leukemia (AML) become long-term survivors, and approximately 50% are cured with chemotherapy only. Limited data exist about their long-term morbidity and social outcomes. The aim of the study was to compare the self-reported use of health care services, health experience, social outcomes, and lifestyle behavior of AML survivors with that of their sibling controls. METHODS: This population-based study included 138 children treated for AML according to the Nordic Society of Pediatric Hematology and Oncology (NOPHO)-AML-84, -88, and -93 trials, and alive by June 30, 2007. Patients treated with hematopoietic stem cell transplantation (HSCT) or relapse were not included. Altogether, 102 (74%) survivors and 91% of their siblings completed a questionnaire. RESULTS: The median follow-up was 11 (range 4-25) years after diagnosis. AML survivors had no increased rate of hospitalization compared with sibling controls, but were more often receiving prescription drugs, especially for asthma (23% vs. 9%, P = 0.03). Self-reported health experience was excellent or very good in 77% and comparable with that of siblings. Educational achievement, employment, and marital status were comparable in the two groups. Among surviving AML patients, 23% were current smokers and 24% of their siblings were current smokers. CONCLUSIONS: The self-reported health of children treated on NOPHO-AML protocols without HSCT was good, and their use of health care services was limited. Reported health and social outcomes were comparable to those of their siblings. Many survivors were smoking which may increase the risk of late effects.

Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations.

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.

Self-Perceived Physical Attractiveness in Relation to Scars Among Adolescent and Young Adult Cancer Survivors: A Population-Based Study.

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.

Sexual function in adolescent and young adult cancer survivors-a population-based study.

PURPOSE: 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. 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. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors (15-29 years) 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. RESULTS: In this study, adolescent and young adult cancer survivors (15-29 years) 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). CONCLUSIONS: We found that adolescent and young adult cancer survivors perceived themselves as being less satisfied with their sexual function than matched population-based controls. IMPLICATIONS FOR CANCER SURVIVORS: 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.