RESUMO
OBJECTIVE: To describe young adult childhood cancer survivors' disclosure of their cancer history (i.e., disclosure behavior, difficulty, and timing), perceived partner responses, and associations with relationship status satisfaction. METHODS: German long-term survivors of childhood cancer (N = 509; response rate: 31.3%, age 21-26, 59.7% female) completed a registry-based nationwide survey (embedded mixed methods design, including closed and open-ended questions) on measures about disclosure history (behavior, difficulty, and timing), partner responses, and relationship status satisfaction. Statistical (χ2 -, t-, or F-tests) and qualitative analyses were conducted. RESULTS: Half of all survivors always disclosed their cancer history to romantic partners. Thereby, three themes for considering (non-)disclosure were identified: Survivors' attitudes, having integrated cancer as part of their identity, and anticipated effects on romantic relationships. About 40% indicated having no difficulties with disclosing their cancer history. The timing of disclosure varied, with most survivors disclosing after a few dates. Facilitators of disclosure were the visibility of their former illness (e.g., scars), having trust in a (potential) partner, getting older/mature, and previous positive experiences with disclosure. Few survivors (13.8%) had ever experienced negative responses from dating partners. Yet, those who had negative experiences, found it more difficult to disclose their cancer history. Survivors were overall rather satisfied with their relationship status, with partnered survivors reporting greater satisfaction than singles (Hedge's g = 1.68); and particularly partnered survivors with past positive responses being most satisfied. CONCLUSIONS: Young adult childhood cancer survivors appear rather open in disclosing their cancer history to (potential) romantic partners, and few experienced negative responses. Psycho-educational programs may emphasize such findings in helping to prevent fear of disclosure or avoidance of dating and disclosure among survivors.
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Sobreviventes de Câncer , Neoplasias , Adulto Jovem , Humanos , Feminino , Criança , Adulto , Masculino , Revelação , Sobreviventes , Autorrevelação , Parceiros SexuaisRESUMO
Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.
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Sobreviventes de Câncer , Neoplasias , Saúde Sexual , Criança , Adolescente , Adulto Jovem , Humanos , Adulto , Sobreviventes , Neoplasias/complicações , Neoplasias/terapia , SobrevivênciaRESUMO
Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.
Assuntos
Sobreviventes de Câncer , Neoplasias , Saúde Sexual , Criança , Adolescente , Adulto Jovem , Humanos , Adulto , Sobreviventes , Neoplasias/complicações , Neoplasias/terapia , SobrevivênciaRESUMO
PURPOSE: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany. METHODS: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing. RESULTS: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33). CONCLUSION: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Humanos , Criança , Adulto Jovem , Feminino , Masculino , Neoplasias/epidemiologia , Neoplasias/complicações , Fertilidade , Sobreviventes , Anticoncepção/métodos , AnticoncepcionaisRESUMO
BACKGROUND: Childhood cancer and its treatment can impair survivors' development throughout life, particularly psychosexual development, which can be affected in complex ways and is crucial for survivors' well-being. Yet, research is scarce. AIM: This study assessed psychosexual development (milestone attainment, age at attainment, perceived timing) in young adult survivors of childhood cancer. It further examined sexual satisfaction and sexual functioning, and whether survivors' perceived timing of sexual debut was related to satisfaction or functioning. METHODS: A registry-based nationwide survey was completed by N = 492 German survivors of childhood cancer (age 21-26 years, 6-26 years postdiagnosis). They completed standardized measures of psychosexual milestones (eg, first kiss, sexual debut), sexual satisfaction, and sexual functioning. Psychosexual development was compared to normative data (N = 1,533). OUTCOMES: Psychosexual development, sexual satisfaction, and sexual functioning were the primary outcome measures. Psychosexual development was characterized in three ways: milestone attainment (yes/no), age at attainment, perceived timing ("right" time, too early/late). RESULTS: Milestone attainment was comparable to normative data, except for sexual debut: Survivors were less often experienced (82.5% vs 88%; P = .002) and older at sexual debut (17.4 vs 16.2 years; g = 0.55), but most survivors (58.3%) perceived their timing as "right." Survivors of brain tumors were least likely to have had their sexual debut, but if experienced age at sexual debut was similar to other survivors. Female survivors were somewhat more experienced than males (eg, first kiss, first relationship; <10% difference), but they were somewhat older when they first kissed (g = 0.26). Age at diagnosis was unrelated to milestone attainment. Perceived early/late sexual debut was related to lower satisfaction in female survivors (P = .026), but unrelated to sexual dysfunction. Instead, partnered men reported particularly low dysfunction whereas women reported similar levels of sexual dysfunction irrespective of their relationship status (P = .049). Overall, sexual functioning was favorable (60.2%: not/barely problematic). CLINICAL IMPLICATIONS: Most survivors reported favorable sexual satisfaction and functioning, but a minority of survivors may need supportive services. STRENGTHS & LIMITATIONS: This project represents one of few large-scale studies on psychosexual development in childhood cancer survivors relative to normative data, and is the first to link development to sexual satisfaction/functioning. Assessing satisfaction/functioning with validated, but brief measures limits detailed insights, but was inclusive of any sexual orientation. Medical background information based on registry data was limited. CONCLUSION: Results showed normative psychosexual development (except for sexual debut) in most survivors. A self-determined attitude toward sexuality (ie, engaging in sexual activities at the "right" time) may generally determine positive sexual experiences. Lehmann V, Gerhardt CA, Baust K, et al. Psychosexual Development and Sexual Functioning in Young Adult Survivors of Childhood Cancer. J Sex Med 2022;19:1645-1654.
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Sobreviventes de Câncer , Neoplasias , Disfunções Sexuais Fisiológicas , Feminino , Adulto Jovem , Criança , Humanos , Masculino , Adulto , Sobreviventes , Desenvolvimento Psicossexual , Comportamento Sexual , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Central nervous system (CNS)-directed treatments can cause long-term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS-directed treatment, over the first 3 years following a cancer diagnosis. PROCEDURE: Mothers, fathers, and children (ages 5-18 years at diagnosis) from 217 families reported on the child's competence (academic, social) and adjustment (anxious/depressed, withdrawn/depressed) near a new cancer diagnosis or relapse and 3 years later. Children were categorized into CNS-directed treatment (n = 112; including cranial radiation, intrathecal chemotherapy, and/or neurosurgery) and non-CNS-directed treatment (n = 105) groups. RESULTS: At enrollment, there were few differences in competence and emotional adjustment among children based on treatment or diagnostic group. At 3 years, mothers and fathers reported poorer social competence for the CNS-directed treatment group, and fathers reported poorer school competence for the CNS-directed treatment group. Over time, father ratings of social competence increased for the non-CNS-directed treatment group, but not the CNS-directed treatment group. While father ratings of academic competence declined for the CNS-directed treatment group, mother ratings declined the most for children diagnosed with a brain tumor. All children demonstrated higher anxious/depressed scores over time. CONCLUSIONS: CNS-directed treatment may be a valuable indicator to identify childhood cancer survivors at risk for poor competence during early survivorship. Follow-up screening and supportive services are recommended, as well as additional longitudinal research.
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Neoplasias Encefálicas , Sobreviventes de Câncer , Ajustamento Social , Adolescente , Ansiedade , Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/terapia , Sistema Nervoso Central , Criança , Pré-Escolar , Irradiação Craniana , Depressão , Pai , Feminino , Humanos , Masculino , Mães , Recidiva Local de NeoplasiaRESUMO
PURPOSE: Young individuals face a variety of developmental tasks as they mature into adulthood. For survivors of childhood cancer, growing up may be more difficult due to their illness and late effects from treatment. This study is the first to quantitatively examine perceptions of maturity and how these perceptions contribute to satisfaction with life among young adult survivors of childhood cancer. METHODS: Ninety survivors of childhood cancer (Mage = 29.8; 7-37 years post-diagnosis) were recruited to complete online surveys on how mature they felt relative to peers, their perceived maturity on three domains (financial, personal, social), and life satisfaction. RESULTS: Most survivors (62%; n = 56) felt they grew up faster than their peers, and over half (56%; n = 50) felt more mature. Perceived maturity was high on all three domains, but brain tumor survivors reported significantly lower maturity than other survivors (d = 0.76-1.11). All maturity domains were positively associated with life satisfaction (r = .49-.56). Hierarchical linear regressions indicated that 44% of the variance in life satisfaction was explained by perceptions of growing up slower (ß = - 1.08, p = .004) and marginally by greater perceived personal maturity (ß = 0.45, p = .061). CONCLUSIONS: Childhood cancer can influence development, with most survivors feeling that they grew up faster and were more mature than peers. Personal maturity was related to life satisfaction, with survivors of brain tumors or those who felt they grew up slower at greatest risk for lower life satisfaction. Future research and clinical practice should consider survivors' development and maturation across the life span to promote overall well-being.
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Neoplasias , Satisfação Pessoal , Adulto , Criança , Humanos , Recém-Nascido , Qualidade de Vida , Inquéritos e Questionários , Sobreviventes , Adulto JovemRESUMO
BACKGROUND: Adolescent and young adult (AYA) males newly diagnosed with cancer are often faced with making quick decisions about whether to cryopreserve ("bank") sperm prior to treatment initiation. Given that parental influence is crucial among young patients, the present study examines the prevalence of and factors associated with parent recommendation to bank sperm. PROCEDURE: Parents of 13- to 21-year-old males newly diagnosed with cancer and at risk for infertility secondary to impending gonadotoxic treatment completed questionnaires typically within one week of treatment initiation. Medical and sociodemographic data, communication factors, and psychological factors were considered in a logistic regression model of parent report of parental recommendation to bank sperm (yes/no). RESULTS: Surveys from 138 parents (70.3% female) of 117 AYA males (mean age = 16.1 years, SD = 2.0) were analyzed. Over half of parents recommended banking to their sons (N = 82; 59.4%). Parents who received a provider recommendation to bank sperm (odds ratio [OR] = 18.44, 95% confidence interval [CI], 4.20-81.01, P < 0.001) or who believed in the benefits of banking (OR = 1.22, 95% CI, 1.02-1.47, P = 0.03) were significantly more likely to recommend sperm banking. CONCLUSIONS: Given parents' role in influencing sperm banking outcomes, provider recommendation and promotion of banking benefits may influence parents and empower initiation of these sensitive discussions with their sons. Utilization of this approach should yield beneficial outcomes regardless of the banking decision.
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Preservação da Fertilidade/psicologia , Infertilidade Masculina/prevenção & controle , Neoplasias/terapia , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Preservação do Sêmen/psicologia , Bancos de Esperma/estatística & dados numéricos , Adolescente , Adulto , Comunicação , Estudos Transversais , Feminino , Seguimentos , Humanos , Infertilidade Masculina/psicologia , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Neoplasias/psicologia , Relações Pais-Filho , Espermatozoides/química , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Cancer patients increasingly seek second opinion (SO) consultations, but there is scarce empirical evidence to substantiate medical and psychological benefits for patients. This is the first study to examine patient- and oncologist-reported (1) motivations and expectations of patients to seek a SO, (2) the perceived medical outcome, and (3) psychological consequences of SOs over time (i.e. patients' uncertainty and anxiety). MATERIAL AND METHODS: This multi-informant longitudinal cohort study (SO-COM) included consecutive cancer patients referred for a SO (N = 70; age 28-85), as well as their referring and consulting oncologists. Outcome measures were completed at three time points: Patients and referring oncologists reported motivations and expectations before the SO (T0), patients and consulting oncologists reported the medical outcome of the SO (i.e. discrepancy between first and second opinion) immediately following the SO (T1), and patients reported their uncertainty and anxiety at T0, T1, and two months following the SO (T2). RESULTS: Cancer patients most frequently reported wanting expert advice, exhausting all options, and/or needing more information as motivations for SOs. Referring oncologists rather accurately anticipated these motivations, except most did not recognize patients' information needs. The vast majority of patients (90.0%) received a medical advice similar to the first opinion, although 65.7% had expected to receive a different opinion. Patients' uncertainty (F = 6.82, p=.002; η2 =.22), but not anxiety (F = 3.074, p=.055, η2 =.11) was significantly reduced after the SO. CONCLUSIONS: SOs can yield psychological benefits by reducing patients' uncertainty, but the added medical value remains debatable. Referring oncologists may not be fully aware of their patients' information needs. Patients should be better informed about goals and benefits of SOs to better manage their expectations. More cost-effective ways of optimally providing medically and psychologically valuable SOs need to be explored.
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Motivação , Neoplasias , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Neoplasias/terapia , Relações Médico-Paciente , Encaminhamento e Consulta , IncertezaRESUMO
PURPOSE: Fertility-related services in pediatric oncology are increasing, but barriers to care remain and few structured programs are described in the literature. Therefore, the study objectives were (1) to characterize fertility-related services in a large pediatric oncology center and (2) to discuss recommendations for fertility-related services across the pediatric cancer continuum. METHODS: Medical records of all cases referred to our Fertility Preservation Clinic within a 3-year period were reviewed, which included 292 patients/survivors with malignant disease. Approximately half (n = 152/292, 52.1%) were cancer patients referred prior to treatment (n = 92/152) or while on active therapy (n = 60/152). The other half (n = 140/292; 47.9%) were survivors who had completed treatment. RESULTS: Referrals more than doubled over 3 years. Most patients referred before treatment were offered and opted for FP (72.8% attempted; 58.9% completed). More male than female patients opted for FP (77.6% vs. 22.4%), but completion rates were higher among females (93.3% vs. 76.9%). Rates of FP before treatment did not increase over time (p = .752). Many patients on-treatment were referred for infertility risk counseling, demonstrating information/support needs in this group. Referred survivors questioned their fertility post-treatment and completed fertility assessments, indicating intact fertility among few (~ 15%). CONCLUSIONS: This review demonstrated the acceptance and increasing need for fertility-related services in pediatric oncology across the cancer continuum, including FP before treatment, counseling during treatment, and fertility assessment in survivorship. Based on our experiences, current recommendations are discussed and include standardized procedures, streamlined referrals, adequate communication/education (of providers and families), and meeting specific needs of young cancer patients/survivors.
Assuntos
Preservação da Fertilidade/métodos , Neoplasias/terapia , Adolescente , Adulto , Sobreviventes de Câncer , Comunicação , Aconselhamento/métodos , Aconselhamento/estatística & dados numéricos , Tomada de Decisões , Feminino , Fertilidade , Preservação da Fertilidade/psicologia , Preservação da Fertilidade/estatística & dados numéricos , Humanos , Masculino , Oncologia/métodos , Neoplasias/epidemiologia , Neoplasias/psicologia , Neoplasias/reabilitação , Pediatria/métodos , Encaminhamento e Consulta , Estudos Retrospectivos , Tennessee/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: To examine whether adult survivors of childhood cancer perceive a direct impact of potential/confirmed infertility on their romantic relationships/singlehood. METHODS: Open-ended qualitative phone interviews were conducted with 57 adult survivors of childhood cancer and analyzed through thematic content analysis until saturation was reached (N = 30). RESULTS: Interviews revealed three major themes: (1) impact on survivors, (2) impact on partners/romantic relationships, and (3) alternative routes to parenthood. An overarching theme related to (4) timing also emerged. In describing the impact on themselves, survivors shared subthemes of (1.1) becoming aware of infertility as potential late effect of childhood cancer treatment and (1.2) their emotional reactions (ie, worries/concerns, distress, guilt, no emotional reaction). The impact on partners/romantic relationships also included subthemes: (2.1) partner communication, (2.2) partner reactions, and (2.3) the journey of active family planning. CONCLUSIONS: The perceived impact of potential/confirmed infertility on romantic relationships of adult survivors of childhood cancer varied across individuals and time. Its presence or absence depends on life circumstances (eg, marital status, life goals), and if present, negative effects were typically resolved over time by having a pregnancy. Other survivors found joy and comfort in step-children, considering adoption, or embracing a life without children. While more research is needed, findings indicate that discussions about infertility and fertility testing should be tailored to individual survivors and their needs, which may change over time. Timely referrals to reproductive specialists or adoption agencies are recommended for those who want children and have difficulties conceiving.
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Sobreviventes de Câncer/psicologia , Corte/psicologia , Infertilidade/psicologia , Neoplasias/psicologia , Parceiros Sexuais/psicologia , Adulto , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Comportamento Social , Adulto JovemRESUMO
BACKGROUND: Although survivors of adolescent-onset cancers are at risk of infertility, the majority desire children. Fertility preservation options are available for adolescents, but sperm banking remains underused. To the authors' knowledge, patient factors that influence decisions to bank sperm are poorly understood. METHODS: A cross-sectional study of 146 adolescent males who were newly diagnosed with cancer and who completed surveys within 1 week of treatment initiation was performed. Participants, 65% of whom were white, were aged 13 to 21 years (mean, 16.49 years; standard deviation, 2.02 years) and were at risk of infertility secondary to impending gonadotoxic treatment. Participating institutions included 8 leading pediatric oncology centers across the United States and Canada. RESULTS: Of the patients approached, approximately 80.6% participated. Parent recommendation to bank (odds ratio [OR], 4.88; 95% confidence interval [95% CI], 1.15-20.71 [P = .03]), higher Tanner stage (OR, 4.25; 95% CI, 1.60-11.27 [P < .01]), greater perceived benefits (OR, 1.41; 95% CI, 1.12-1.77 [P < .01]), and lower social barriers to banking (OR, 0.88; 95% CI, 0.81-0.96 [P < .01]) were found to be associated with adolescent collection attempts, whereas meeting with a fertility specialist (OR, 3.44; 95% CI, 1.00-11.83 [P = .05]), parent (OR, 3.02; 95% CI, 1.12-8.10 [P = .03]) or provider (OR, 2.67; 95% CI, 1.05-6.77 [P = .04]) recommendation to bank, and greater adolescent self-efficacy to bank (OR, 1.16; 95% CI, 1.01-1.33 [P = .03]) were found to be associated with successful sperm banking. CONCLUSIONS: Adolescents' perceived benefits of sperm banking, higher Tanner stage, and parent recommendation were associated with collection attempts, whereas perceived social barriers decreased this likelihood. Successful banking was associated with greater adolescent self-efficacy, parent and provider recommendation to bank, and consultation with a fertility specialist. Providers should consult with both adolescents and parents regarding fertility preservation, and interventions should be tailored to address barriers to sperm banking while promoting its benefits.
Assuntos
Comportamento do Adolescente , Criopreservação , Preservação da Fertilidade , Comportamentos Relacionados com a Saúde , Neoplasias/epidemiologia , Neoplasias/terapia , Espermatozoides , Adolescente , Comportamento do Adolescente/psicologia , Adulto , Fatores Etários , Idade de Início , Criopreservação/estatística & dados numéricos , Preservação da Fertilidade/métodos , Preservação da Fertilidade/psicologia , Preservação da Fertilidade/estatística & dados numéricos , Humanos , Infertilidade Masculina/epidemiologia , Infertilidade Masculina/prevenção & controle , Infertilidade Masculina/psicologia , Masculino , Neoplasias/diagnóstico , Neoplasias/psicologia , Fatores de Risco , Preservação do Sêmen/métodos , Preservação do Sêmen/psicologia , Preservação do Sêmen/estatística & dados numéricos , Fatores Socioeconômicos , Bancos de Esperma , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: To extend the limited research on psychosexual development among childhood cancer survivors, by not only focusing on the prevalence and age of milestone attainment, but also survivors' attitudes toward the timing of reaching such milestones. METHODS: Adult survivors of childhood cancer (N = 90; Mage = 29.8, SD = 5.2), recruited from a US pediatric institution, completed online surveys indicating whether they had reached 5 milestones of psychosexual development (ie, first kiss, first boy-/girlfriend, first physical intimacy, sexual debut, first time in love), age at attainment, and perceptions about the timing (ie, right time, wished it had happened earlier, wished they had waited). RESULTS: Almost all survivors had reached each milestone (≥90%), except for sexual debut (83.3%). Survivors reported their first kiss as the earliest milestone at age 14.6 (N = 82, 92%) and falling in love as the latest milestone at age 18.8 (N = 80; 90%). This timing did not differ by sex/cancer-specific factors. Most survivors (~60%) felt they reached each milestone at the right time. Compared with US normative data, both male and female survivors were less likely to have experienced their sexual debut and were approximately 1.5 years older at sexual debut. Nevertheless, 59% of survivors felt that this timing was right and 31% wished they had waited longer. CONCLUSIONS: This is the first study to demonstrate that although childhood cancer survivors may delay some aspects of psychosexual development, most are satisfied with this timing. Research and clinical practice should emphasize survivors' perceptions/satisfaction toward psychosexual development rather than focusing only on normative milestone attainment.
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Adultos Sobreviventes de Eventos Adversos na Infância , Sobreviventes de Câncer , Neoplasias , Satisfação Pessoal , Desenvolvimento Psicossexual , Adolescente , Adulto , Adultos Sobreviventes de Eventos Adversos na Infância/psicologia , Sobreviventes de Câncer/psicologia , Criança , Feminino , Humanos , Masculino , Neoplasias/psicologia , Desenvolvimento Psicossexual/fisiologiaRESUMO
OBJECTIVE: To examine patient and parent understanding of infertility risk (relative to oncologists' risk ratings) among adolescents newly diagnosed with cancer, and to identify background factors related to inaccurate reporting/estimating. METHODS: Male patients (N = 137; aged 13-21) and their parents completed self-report questionnaires. Those who reported a fertility-related conversation with their provider (N = 102 adolescents, N = 74 parents) reported their infertility risk (ie, what oncologist had communicated) and all participants' estimated risk (ie, personal belief). Reports/estimates were compared with oncologists' ratings to assess relative accuracy, and regression analyses assessed potentially related background factors. RESULTS: Participants' agreement of their risk reports with the oncologist was poor (κ = .079/.122 for adolescents/parents), resulting in most adolescents (59.8%) and parents (58.7%) inaccurately reporting risk. Older adolescents were less likely to overreport risk (OR = 0.69; 95% CI, 0.49-0.97) and parents of sons with the highest Tanner stage were less likely to underreport (OR = 0.28; 95% CI, 0.08-0.92). Risk estimates were also in poor agreement with oncologists' ratings among adolescents (κ = .040) and parents (κ = .088). Accordingly, incongruent estimates occurred in most adolescents (63.7%) and parents (62.2%), although all reported fertility-related conversations with their providers. CONCLUSIONS: Most adolescents and parents inaccurately reported infertility risk, and more poorly estimated risk. Research is needed to identify additional factors associated with accurate understanding of cancer-related infertility risk. Providers should be supported with user-friendly educational tools to promote awareness of infertility risk.
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Compreensão , Conhecimentos, Atitudes e Prática em Saúde , Infertilidade Masculina , Neoplasias/terapia , Pais , Adolescente , Canadá , Comunicação , Fertilidade , Preservação da Fertilidade , Humanos , Masculino , Oncologistas , Relações Médico-Paciente , Pesquisa , Risco , Inquéritos e Questionários , Estados Unidos , Adulto JovemRESUMO
OBJECTIVES: Siblings' psychosocial adjustment to childhood cancer is poorly understood. This systematic review summarizes findings and limitations of the sibling literature since 2008, provides clinical recommendations, and offers future research directions. METHOD: MEDLINE/Pubmed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO were searched for articles related to siblings, psychosocial functioning, and pediatric cancer. After systematic screening, studies meeting inclusion criteria were rated for scientific merit, and findings were extracted and synthesized. In total, 102 studies were included (63 quantitative, 35 qualitative, 4 mixed-methods). RESULTS: Methodological limitations are common. Mean levels of anxiety, depression, and general adjustment are similar across siblings and comparisons, but symptoms of cancer-related posttraumatic stress are prevalent. School-aged siblings display poorer academic functioning and more absenteeism but similar peer relationships as peers. Quality of life findings are mixed. Adult siblings engage in higher levels of risky health behaviors and may have poorer health outcomes than comparisons. Risk factors for poor sibling adjustment include lower social support, poorer family functioning, lower income, non-White race, and shorter time since diagnosis, but findings are inconsistent. Qualitative themes include siblings' maturity, compassion, and autonomy, but also strong negative emotions, uncertainty, family disruptions, limited parental support, school problems, altered friendships, and unmet needs. CONCLUSION: Despite methodological limitations, research indicates a strong need for sibling support. Clinical recommendations include identifying at-risk siblings and developing interventions to facilitate family communication and increase siblings' social support, cancer-related knowledge, and treatment involvement. Future longitudinal studies focusing on mechanisms and moderators of siblings' adjustment would inform timing and targets of psychosocial care.
Assuntos
Adaptação Psicológica , Neoplasias/psicologia , Qualidade de Vida/psicologia , Irmãos/psicologia , Adolescente , Adulto , Ansiedade/psicologia , Criança , Comunicação , Depressão/psicologia , Feminino , Humanos , Masculino , Grupo Associado , Apoio SocialRESUMO
Infertility is a common and distressing late effect of cancer treatment among male survivors. Investigators examined desire for parenthood, prioritization of fertility compared to other life goals, and reports of fertility-related discussions among a cohort of male adolescent and young adult survivors. Eighty percent desired a biological child, yet only 31% ranked having a child among their "top 3" life goals. Only 40% reported fertility-related discussions with their health care providers in survivorship. Given the importance of biological children among this cohort, future guidelines should encourage a more proactive approach to providing fertility counseling and offering testing, to mitigate distress and prevent unplanned pregnancies.
Assuntos
Preservação da Fertilidade , Infertilidade/prevenção & controle , Infertilidade/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Sobreviventes/psicologia , Adolescente , Adulto , Atitude Frente a Saúde , Feminino , Seguimentos , Humanos , Infertilidade/etiologia , Masculino , Projetos Piloto , Prognóstico , Taxa de Sobrevida , Sobrevivência , Adulto JovemRESUMO
BACKGROUND: Risk factors for impairment in psychosexual development and satisfaction among adult survivors of childhood cancer are poorly understood. The authors compared psychosexual outcomes between survivors and healthy controls, and tested whether at-risk survivors can be identified by 1) treatment neurotoxicity or 2) diagnosis. METHODS: A total of 144 young adult survivors of childhood cancer and 144 matched controls completed questionnaires regarding psychosexual development, sexual satisfaction, and satisfaction with relationship status. Survivors were aged 20 to 40 years and were 5 to 34 years after diagnosis. Using medical chart data, survivors were divided into non-neurotoxic (48 survivors), low-dose (36 survivors), and high-dose (58 survivors) neurotoxic treatment groups. RESULTS: Apart from having fewer lifetime sex partners, survivors did not appear to differ from controls. However, survivors of brain tumors and any survivor who received high-dose neurotoxic treatment reported the lowest rates of achieving milestones of psychosexual development, whereas sexual and relationship status satisfaction were found to be related to relationship status. Neurotoxic treatment intensity further distinguished between survivors of brain tumors with and without psychosexual impairment. CONCLUSIONS: The intensity of neurotoxic treatment may be a valuable indicator of risk for psychosexual impairment relative to diagnosis alone. Health care providers should assess romantic/sexual problems among survivors at risk and make referrals if needed. Cancer 2017;123:1869-1876. © 2017 American Cancer Society.
Assuntos
Neoplasias/terapia , Síndromes Neurotóxicas/epidemiologia , Satisfação Pessoal , Desenvolvimento Psicossexual , Saúde Reprodutiva , Sobreviventes , Adulto , Antineoplásicos/efeitos adversos , Neoplasias Encefálicas/terapia , Estudos de Casos e Controles , Irradiação Craniana/efeitos adversos , Citarabina/efeitos adversos , Feminino , Humanos , Injeções Espinhais , Leucemia/terapia , Linfoma/terapia , Masculino , Metotrexato/efeitos adversos , Síndromes Neurotóxicas/etiologia , Orgasmo , Fatores de Risco , Parceiros Sexuais , Inquéritos e Questionários , Tiotepa/efeitos adversos , Adulto JovemRESUMO
BACKGROUND: Families often express a need for additional information about neurocognitive late effects (NCLE) after a pediatric cancer diagnosis. Therefore, we examined: (i) differences in parent, child, and oncologist estimates of risk for NCLE; (ii) whether the estimates of parents and/or children change over time; and (iii) whether estimates are different for children treated with central nervous system (CNS) directed therapies. PROCEDURE: Mothers, fathers, and children (initial age: 5-17, self-report: >10) from 258 families reported their perceived likelihood of the child developing "thinking/learning problems" on a visual analog scale (0-100%) at 2 months (T1), 1 year (T2), and 3 years (T3) following cancer diagnosis/relapse. Oncologists estimated the likelihood of NCLE at T1. Children were separated into groups based on CNS-directed treatment (n = 137; neurosurgery, intrathecal chemotherapy, and/or craniospinal radiation) or no CNS treatment. RESULTS: Mother, father, and child estimates of risk for NCLE were similar to oncologists and to one another around diagnosis (T1). Although there were no significant mean differences, a considerable subset of family members either underestimated their child's risk for NCLE (>40%) or overestimated the risk for NCLE (20%) in comparison to oncologists. At T2 and T3, the estimates of mothers were significantly higher than children. Linear growth curves indicated that mothers' estimates for children with CNS-directed treatment significantly increased throughout the first 3 years of survivorship. CONCLUSIONS: Considering that accurate understanding of NCLE is essential to seeking appropriate assessment and intervention, healthcare providers should focus on implementing family-based education early in treatment and throughout survivorship care.
Assuntos
Transtornos Cognitivos/epidemiologia , Transtornos Cognitivos/etiologia , Compreensão , Neoplasias/complicações , Pais , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Risco , SobreviventesRESUMO
Objectives: To examine parent-child communication (i.e., openness, problems) and child adjustment among youth with advanced or non-advanced cancer and comparison children. Methods: Families (n = 125) were recruited after a child's diagnosis/relapse and stratified by advanced (n = 55) or non-advanced (n = 70) disease. Comparison children (n = 60) were recruited from local schools. Children (ages 10-17) reported on communication (Parent-Adolescent Communication Scale) with both parents, while mothers reported on child adjustment (Child Behavior Checklist) at enrollment (T1) and one year (T2). Results: Openness/problems in communication did not differ across groups at T1, but problems with fathers were higher among children with non-advanced cancer versus comparisons at T2. Openness declined for all fathers, while changes in problems varied by group for both parents. T1 communication predicted later adjustment only for children with advanced cancer. Conclusions: Communication plays an important role, particularly for children with advanced cancer. Additional research with families affected by life-limiting conditions is needed.
Assuntos
Comunicação , Ajustamento Emocional , Neoplasias/psicologia , Relações Pais-Filho , Adolescente , Adulto , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Humanos , Estudos Longitudinais , Masculino , Recidiva Local de Neoplasia/patologia , Recidiva Local de Neoplasia/psicologia , Neoplasias/diagnóstico , Neoplasias/patologiaRESUMO
OBJECTIVE: Research on body image and sexual satisfaction after adult onset cancer has shown significant and lasting impairments regarding survivors' sexuality and romantic relationships. However, knowledge about these topics and their associations in adult survivors of childhood cancer is largely lacking. METHODS: Participants completed web-based questionnaires concerning body image, body dissociation, sexual satisfaction, and relationship status satisfaction (i.e., satisfaction with either being in a relationship or being single). Survivors (n = 87) and controls (n = 87) were matched on age and gender, with a mean age of 27 years (range: 20-40). Survivors were most often diagnosed with leukemia (46%), at an average of 16 years prior to study participation (range: 6-33 years). RESULTS: Similar numbers of survivors and controls were single (n = 24/31), in a committed relationship (n = 33/23), or married (n = 30/33). Survivors and controls reported comparable levels of body image, body dissociation, sexual experiences, and sexual and status satisfaction (d = 0.15-0.28). Higher status satisfaction was associated with being in a relationship (compared with being single, ß = 0.439), more positive body image (ß = 0.196), and higher sexual satisfaction (ß = 0.200). CONCLUSIONS: Adult survivors of childhood cancer were comparable to healthy peers regarding views of their bodies and psychosexual development, which was unexpected. Independent of whether people experienced cancer or not, their status satisfaction was associated with their relationship status, body image, and sexual satisfaction. Future research should explore why sexual and body problems are identified after adult onset cancer, whereas this seems to be less of a problem in childhood cancer survivors.