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1.
J Cancer Surviv ; 2024 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-38316726

RESUMO

PURPOSE: To describe recall of fertility-related consultations and cryopreservation and to examine reproductive goals and reproduction post-treatment in long-term survivors of adolescent and young adult (AYA) (age, 18-39 years) cancer. METHODS: This study included n = 1457 male and n = 2112 female long-term survivors (Mage = 43-45 years; 5-22 years from diagnosis) who provided self-report. Clinical data were supplied by the Netherlands Cancer Registry. RESULTS: Most male survivors (72.7%) recalled fertility-related consultations and 22.6% completed sperm cryopreservation. Younger age (OR = 2.8; 95%CI [2.2-3.6]), not having children (OR = 5.0; 95%CI [3.2-7.7]), testicular cancer or lymphoma/leukemia (OR = 2.8/2.5 relative to "others"), and more intense treatments (OR = 1.5; 95%CI [1.1-2.0]) were associated with higher cryopreservation rates. Time since diagnosis had no effect. Of men who cryopreserved, 12.1% utilized assisted reproductive technologies (ART). Most men (88.5%) felt their diagnosis did not affect their reproductive goals, but 7.6% wanted no (additional) children due to cancer. Half of female survivors (55.4%; n = 1171) recalled fertility-related consultations. Rates of cryopreservation were very low (3.6%), but increased after 2013 when oocyte cryopreservation became non-experimental. Of women who cryopreserved, 13.2% successfully utilized ART. Most women (74.8%) experienced no effects of cancer on reproductive goals, but 17.8% wanted no (additional) children due to cancer. CONCLUSIONS: Cryopreservation in men varied by patient/clinical factors and was very low in women, but data of more recently treated females are needed. Utilizing cryopreserved material through ART was rare, which questions its cost-effectiveness, but it may enhance survivors' well-being. IMPLICATIONS FOR CANCER SURVIVORS: The extent to which cryopreservation positively affects survivors' well-being remains to be tested. Moreover, effects of cancer on reproductive goals require further attention, especially in women who refrain from having children due to cancer.

2.
Hum Reprod Update ; 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38305635

RESUMO

BACKGROUND: ART differs in effectiveness, side-effects, administration, and costs. To improve the decision-making process, we need to understand what factors patients consider to be most important. OBJECTIVE AND RATIONALE: We conducted this systematic review to assess which aspects of ART treatment (effectiveness, safety, burden, costs, patient-centeredness, and genetic parenthood) are most important in the decision-making of patients with an unfulfilled wish to have a child. SEARCH METHODS: We searched studies indexed in Embase, PubMed, PsycINFO, and CINAHL prior to November 2023. Discrete choice experiments (DCEs), surveys, interviews, and conjoint analyses (CAs) about ART were included. Studies were included if they described two or more of the following attributes: effectiveness, safety, burden, costs, patient-centeredness, and genetic parenthood.Participants were men and women with an unfulfilled wish to have a child. From each DCE/CA study, we extracted the beta-coefficients and calculated the relative importance of treatment attributes or, in case of survey studies, extracted results. We assessed the risk of bias using the rating developed by the Grading of Recommendations Assessment, Development and Evaluation working group. Attributes were classified into effectiveness, safety, burden, costs, patient-centeredness, genetic parenthood, and others. OUTCOMES: The search identified 938 studies of which 20 were included: 13 DCEs, three survey studies, three interview studies, and one conjoint analysis, with a total of 12 452 patients. Per study, 47-100% of the participants were women. Studies were assessed as having moderate to high risk of bias (critical: six studies, serious: four studies, moderate: nine studies, low: one study). The main limitation was the heterogeneity in the questionnaires and methodology utilized. Studies varied in the number and types of assessed attributes. Patients' treatment decision-making was mostly driven by effectiveness, followed by safety, burden, costs, and patient-centeredness. Effectiveness was rated as the first or second most important factor in 10 of the 12 DCE studies (83%) and the relative importance of effectiveness varied between 17% and 63%, with a median of 34% (moderate certainty of evidence). Of eight studies evaluating safety, five studies valued safety as the first or second most important factor (63%), and the relative importance ranged from 8% to 35% (median 23%) (moderate certainty of evidence). Cost was rated as first or second most important in five of 10 studies, and the importance relative to the other attributes varied between 5% and 47% (median 23%) (moderate certainty of evidence). Burden was rated as first or second by three of 10 studies (30%) and the relative importance varied between 1% and 43% (median 13%) (low certainty of evidence). Patient-centeredness was second most important in one of five studies (20%) and had a relative importance between 7% and 24% (median 14%) (low certainty of evidence). Results suggest that patients are prepared to trade-off some effectiveness for more safety, or less burden and patient-centeredness. When safety was evaluated, the safety of the child was considered more important than the mother's safety. Greater burden (cycle cancellations, number of injections, number of hospital visits, time) was more likely to be accepted by patients if they gained effectiveness, safety, or lower costs. Concerning patient-centeredness, information provision and physician attitude were considered most important, followed by involvement in decision-making, and treatment continuity by the same medical professional. Non-genetic parenthood did not have a clear impact on decision-making. WIDER IMPLICATIONS: The findings of this review can be used in future preference studies and can help healthcare professionals in guiding patients' decision-making and enable a more patient-centered approach.

3.
J Assist Reprod Genet ; 40(10): 2391-2400, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37584730

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Humanos , Criança , Adulto Jovem , Feminino , Masculino , Neoplasias/epidemiologia , Neoplasias/complicações , Fertilidade , Sobreviventes , Anticoncepção/métodos , Anticoncepcionais
4.
Pediatr Blood Cancer ; 70 Suppl 5: e30611, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37548483

RESUMO

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 , Sobrevivência
5.
Psychooncology ; 32(6): 904-912, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36998113

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.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto Jovem , Humanos , Feminino , Criança , Adulto , Masculino , Revelação , Sobreviventes , Autorrevelação , Parceiros Sexuais
6.
Pediatr Blood Cancer ; 70(8): e28437, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34873822

RESUMO

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 , Sobrevivência
7.
Psychol Health ; 38(9): 1109-1127, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-34894900

RESUMO

OBJECTIVE: Cancer patients may seek a second opinion (SO) driven by reduced trust in their own providers. Their trust may be diminished or reinforced through the SO. This study aimed to assess (1) what proportion of patients seek SOs motivated by lacking trust and how trust changes over time; (2) whether patients' trust differs by the outcome of the SO (i.e. similar/different opinion); and (3) how communication during the SO affects trust. DESIGN: A longitudinal mixed methods study including self-report assessments before (T0), immediately following (T1), and two months after the SO (T2). SO consultations (N = 62) were audio recorded, and patient-oncologist communication about the referring oncologist was coded. MAIN OUTCOME MEASURES: Patient-reported motives and their trust in referring oncologists. RESULTS: Reduced trust motivated 21% of patients to seek a SO. Most patients criticised their referring oncologist. Consulting oncologists generally defended their colleagues, but such affirmation was unrelated to patients' subsequent trust. Over time, trust did not change substantially. Yet, it was restored in patients motivated by impaired trust, and remained low for patients receiving a different medical outcome. CONCLUSION: Patients need support to more constructively discuss their treatment relationship. Oncologists need support in providing independent SOs without harming trust relations.

8.
J Sex Med ; 19(11): 1644-1654, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36088275

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Neoplasias , Disfunções Sexuais Fisiológicas , Feminino , Adulto Jovem , Criança , Humanos , Masculino , Adulto , Sobreviventes , Desenvolvimento Psicossexual , Comportamento Sexual , Inquéritos e Questionários
9.
J Cancer Surviv ; 16(4): 913-924, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34669141

RESUMO

PURPOSE: Young adult cancer patients and survivors have age-specific care needs, but care needs related to sexual health are poorly understood. A systematic literature review was conducted to examine sexual health-related care needs among patients/survivors diagnosed with cancer during young adulthood (age: 18-39 years). The prevalence and types needs were assessed along with associated patient factors. METHODS: Four major databases were screened to identify relevant studies, which were also assessed for risk of bias; all following PRISMA guidelines. RESULTS: Identified studies (N = 35) often assessed sexual health-related care needs by whether participants experienced a generic need for support from providers. The prevalence of such needs ranged between 8 and 61.7% and was higher in female survivors and those with more health impairments. The type of diagnosis could also play a role in these varying prevalence rates, but was not systematically tested in included studies. Types of sexual health-related care needs were clustered into practical/emotional support needs (e.g., coping with physical side effects), information needs (e.g., more details), and communication needs (e.g., providers should initiate conversations, validate concerns, be empathetic/open). Needs should be addressed in-person and/or online. CONCLUSIONS: The extent of needs related to sexual health varies among young adult patients and survivors, but types of needs center around improving provision of support and information by providers. IMPLICATIONS FOR CANCER SURVIVORS: Sexual health should routinely be addressed alongside other potential effects of cancer treatment to allow for constructive conversations between patients and providers. Referrals to (online) resources or specialists should be tailored to individual preferences.


Assuntos
Neoplasias , Saúde Sexual , Adolescente , Adulto , Comunicação , Feminino , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Comportamento Sexual/psicologia , Sobreviventes/psicologia , Adulto Jovem
10.
J Adolesc Young Adult Oncol ; 11(2): 138-145, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-33999693

RESUMO

Purpose: Increasing numbers of childhood cancer survivors enter adulthood and encounter decisions surrounding parenthood. However, limited research has systematically examined how childhood cancer may influence parenthood attitudes among survivors. Methods: Adult survivors of childhood cancer, who had or wanted to have children (N = 77; Mage = 30.2 years, range: 22-43; 91% White), rated their perceived impact of cancer at enrollment and parenthood attitudes using the "Attitudes to Parenthood After Cancer Scale" 2 years later. First, internal consistencies for the parenthood measure were examined, and modified subscales were proposed. Second, hierarchical stepwise regressions analyzed the contribution of background factors and cancer's impact on parenthood attitudes. Results: Reevaluation of parenthood items yielded four subscales with improved internal consistency (α's > .78): improved parenting due to cancer, no children due to cancer, concerns about a (potential) child's health, and parenthood desire irrespective of own health concerns. Already having children (n = 38) was related to more favorable ratings on most subscales. Older age was associated with perceiving improved parenting due to cancer (r = .24) and shorter time since diagnosis was related to considering having no children due to cancer (r = -.23). Hierarchical stepwise regressions reconfirmed parenthood status as related to more favorable parenting attitudes. Cancer preoccupation and perceiving cancer as a most difficult life experience predicted more concerns toward parenthood (R2 = .044-.216). Conclusions: Parenthood attitudes were more favorable among survivors with children, who were older, and/or further into survivorship. Survivors burdened by their cancer experience reported more concerns about parenthood. Childhood cancer may shape parenthood perceptions positively and negatively, warranting further research to inform interventions.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Atitude , Criança , Humanos , Neoplasias/complicações , Pais , Sobreviventes , Adulto Jovem
11.
Pediatr Blood Cancer ; 68(9): e29220, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34245215

RESUMO

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.


Assuntos
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 Neoplasia
12.
Front Psychol ; 12: 635422, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34135806

RESUMO

Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology. Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients (N = 69) who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise. Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: (1) specifying the degree of uncertainty, (2) explaining reasons of uncertainty, (3) providing personalized estimates of uncertainty to patients, (4) downplaying or magnifying uncertainty, (5) reducing or counterbalancing uncertainty, and (6) providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their (7) choice of words/language to convey uncertainty (i.e., "I" vs. "we"; level of explicitness). Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may (un)consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these.

13.
Support Care Cancer ; 29(11): 6661-6668, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33961121

RESUMO

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.


Assuntos
Neoplasias , Satisfação Pessoal , Adulto , Criança , Humanos , Recém-Nascido , Qualidade de Vida , Inquéritos e Questionários , Sobreviventes , Adulto Jovem
14.
Patient Educ Couns ; 104(10): 2490-2497, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33744055

RESUMO

OBJECTIVE: Providing a second opinion (SO) in oncology is complex, and communication during SOs remains poorly understood. This study aimed to systematically observe how patients and oncologists communicate about SO-specific topics (i.e., patient motivation, the referring oncologist, treatment transfer/back-referral), and how such communication affects patient satisfaction. METHODS: A prospective mixed-methods study of cancer patients seeking a SO (N = 69) and consulting oncologists was conducted. Before the SO, patients reported their expected place of future treatment. Following the SO, patients' and oncologists' satisfaction was assessed. All SOs were audio-recorded. Absolute and relative duration of SO-specific talk were calculated and specific events (e.g., questions/utterances) were coded (incl. valence, explicitness). RESULTS: SOs lasted 19-73 min, of which 3.7% was spent discussing motivations. Oncologists rarely explored patients' motivations. Talk about referring oncologists (12.5% of consultation) was mostly critical by patients (M = 43.0%), but positive/confirming by consulting oncologists (M = 73.5%). Although 22.2% of patients expected a treatment transfer, this topic (3.3% of consultation time) was rarely explicitly discussed. Patients who were referred back were significantly less satisfied (d = 0.85). CONCLUSION: Patient-provider communication in oncological SOs appears insufficiently aligned. PRACTICE IMPLICATIONS: Patients and oncologists need support to explicitly and productively communicate about SO-specific topics and to better manage expectations. Recommendations are provided.


Assuntos
Neoplasias , Oncologistas , Comunicação , Humanos , Neoplasias/terapia , Relações Médico-Paciente , Estudos Prospectivos , Encaminhamento e Consulta
15.
Acta Oncol ; 59(12): 1512-1519, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32702254

RESUMO

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.


Assuntos
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 , Incerteza
16.
Pediatr Blood Cancer ; 67(10): e28217, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32453503

RESUMO

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.


Assuntos
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 Jovem
17.
J Adolesc Young Adult Oncol ; 9(5): 572-578, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32320315

RESUMO

Purpose: Approximately half of male childhood cancer survivors experience impaired fertility, which is known to cause psychological distress. Yet, less than 50% of at-risk adolescent and young adult (AYA) males pursue fertility preservation (FP) at diagnosis. Alternatives to biological parenthood (e.g., adoption/sperm donation) may be considered, but little is known about perspectives regarding these alternatives among AYA males and their families. Methods: Families of AYAs were recruited for a mixed-method study examining FP decisions at cancer diagnosis. One month later, 48 participants from 20 families (18 male AYAs, 12-22 years of age, 19 mothers, 11 fathers) completed semistructured interviews, including two questions about: (a) alternative routes to biological parenthood, and (b) their knowledge about the processes involved and/or challenges associated with such alternatives. Verbatim transcripts were coded for thematic content using the constant comparison method. Results: Three main themes were identified, of which two represent both ends of considering alternative parenthood: (a) Willingness to consider alternatives to biological parenthood, primarily adoption; (b) No consideration/discussion of alternative family building options; and (c) Variable knowledge of alternatives and/or associated challenges. Notably, more AYAs than parents mentioned a specific preference for biological children. Conclusions: One-month postcancer diagnosis, most parents reported willingness to consider alternatives to biological parenthood for their sons, while AYA males were less knowledgeable or open to these options. Future research should prospectively examine how these attitudes affect FP decisions before treatment. Medical and psychosocial providers should counsel patients and survivors accordingly to optimize reproductive outcomes and prevent psychosocial distress if parenthood goals are unfulfilled.


Assuntos
Neoplasias/psicologia , Adolescente , Adulto , Criança , Tomada de Decisões , Humanos , Masculino , Pais , Inquéritos e Questionários , Adulto Jovem
18.
J Adolesc Young Adult Oncol ; 9(3): 359-366, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32091940

RESUMO

Purpose: Childhood cancer survivors are at risk for impaired psychosocial functioning, but limited research has focused on psychosexual outcomes in young adulthood. This qualitative study examined the perceived impact of childhood cancer on adult survivors' romantic relationships and sexual/physical intimacy. Methods: Phone interviews were completed with adult survivors of childhood cancer, exploring the impact of cancer on (1) romantic relationships and (2) sexual/physical intimacy. Verbatim transcripts were coded using thematic content analysis until saturation was confirmed (n = 40). Results: Survivors in this study (n = 40) were 23-42 years old (M = 29.8; 63% female) and 10-37 years postdiagnosis (M = 18.4). Regarding romantic relationships, 60% of participants reported a negative impact, while 55% of participants reported positive effects; ∼25% of participants reported no impact of childhood cancer on adult romantic relationships. Negative themes included fertility-related concerns, physical effects (e.g., self-consciousness), feeling emotionally guarded, and delayed dating. Positive themes were creating new perspectives, increased maturity, and stronger bonds with partners. Forty percent of survivors in this study perceived having fewer partners than peers. Regarding sexual/physical intimacy, 68% of participants reported a negative impact (themes: body image, fertility-related concerns, sexual/physical dysfunction), while 33% of participants reported no effects. Conclusions: This study demonstrates both positive and negative effects of childhood cancer on adult survivors' romantic relationships, whereas effects on physical intimacy were predominantly negative. Further research is needed to inform effective psychosexual interventions, and health care providers should routinely address these topics in survivorship care.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/psicologia , Comportamento Sexual/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Adulto Jovem
19.
Patient Educ Couns ; 103(1): 55-62, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31349965

RESUMO

OBJECTIVES: Patient recall of medical information is usually poor. Healthcare providers can employ affect-oriented (i.e., showing care) or cognition-oriented communication styles (i.e., structuring information) to enhance recall, but research evidence is limited especially among clinical and/or older patient populations. This video-vignette study manipulated provider caring and information structuring to examine effects on recall and trust among cancer patients/survivors. METHODS: In an online survey, 148 participants (Mage = 62) were randomized to one of four video conditions in a two (standard communication vs. enhanced caring) by two (standard vs. enhanced structuring) design, and completed measures of active recall, recognition, and trust. RESULTS: Increased caring or structuring did not enhance active recall or recognition, instead both were higher among younger, female, or highly educated participants. The caring condition induced higher perceived trust in the provider within the whole sample, but trust was significantly correlated with decreased recall (r = -.268) among younger participants. CONCLUSIONS: Provider caring can strengthen the patient-provider relationship by enhancing trust. Yet, increased trust may impair recall among younger patients. Structuring treatment information did not enhance recall and recognition, but additional research is needed. PRACTICE IMPLICATIONS: Providers may use additional ways of structuring/organizing information to help enhance recall (e.g., written information).


Assuntos
Neoplasias , Relações Médico-Paciente , Comunicação , Feminino , Humanos , Rememoração Mental , Pessoa de Meia-Idade , Neoplasias/terapia , Confiança
20.
Patient Educ Couns ; 103(3): 514-520, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31585818

RESUMO

OBJECTIVES: Tailoring medical information to cancer patients' needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the amount of preferred information may be easily implementable in clinic and is tested here. METHODS: A video-vignette experiment was used to systematically vary video patients' information preferences (limited/extensive) and amount of provided information (additional/no additional). N = 253 cancer patients/survivors evaluated these video-recorded consultations, serving as analogue patients (APs), and completed outcome measures. RESULTS: Tailoring information to video patients' preferences had no effect on APs' evaluation of the consultation (satisfaction, trust). Yet, there was a main effect of APs' own information preferences: Those preferring extensive information recalled (MΔ = 5.8%) and recognized (MΔ = 3.5%) more information than those preferring limited information. Moreover, information provision mattered among APs who preferred limited information: They recognized even less if provided with extensive information. CONCLUSIONS: Tailoring to the amount of video patient's information preferences did not affect APs' evaluation of the consultation (satisfaction, trust), while APs' personal information preferences determined their recall and recognition of medical information. PRACTICE IMPLICATIONS: Information preferences should be assessed and tailored to in clinical practice. Overwhelming patients/survivors, who prefer limited information, should be prevented.


Assuntos
Sobreviventes de Câncer/psicologia , Comunicação , Neoplasias/terapia , Preferência do Paciente , Medidas de Resultados Relatados pelo Paciente , Relações Médico-Paciente , Adulto , Feminino , Humanos , Masculino , Rememoração Mental , Pessoa de Meia-Idade , Determinação de Necessidades de Cuidados de Saúde , Neoplasias/psicologia , Assistência Centrada no Paciente , Encaminhamento e Consulta , Confiança , Gravação em Vídeo
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