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1.
BMC Cancer ; 24(1): 788, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38956510

RESUMO

BACKGROUND: Developing cancer in young adulthood is a non-normative life event and associated with adverse physical, social and psychological consequences. High psychological distress is common in AYA cancer patients including anxiety, depression or fear of recurrence. At the same time, it is well known that AYA often report unmet needs for support, particularly in terms of informational exchange and emotional support from peers in order to benefit from shared experiences and enhance self-efficacy. Especially in the AYA group, interactions with other same-aged cancer patients may represent an essential resource in terms of coping with the disease, as family members and friends are often overwhelmed and struggling with helplessness. Currently, there is a lack of professional support services using peer support (e.g. psycho-oncological support, aftercare consultations, social legal counselling) or evaluated peer support interventions in Germany. Our aim is to assess the effectiveness of the Peer2Me intervention for AYAs, in which acute patients (mentees) are accompanied by an AYA survivor (mentor) over a period of three months. METHODS: A prospective Comprehensive Cohort Design with repeated measures will be used to evaluate the effectiveness of Peer2Me for AYA. A sample of 180 patients in active cancer treatment aged 18 to 39 years will be enrolled and randomized to the intervention or control condition (a single AYA-specific consultation). Following mentor training, mentees and mentors are matched by diagnosis, age, and gender. The primary outcome is self-efficacy; secondary outcomes include measures of anxiety, depression, health literacy, life satisfaction and social support life. Outcomes will be measured at baseline before the intervention (t1), immediately after completion of the three-month intervention (t2) and three months after completion the intervention (t3). For the final analyses, we will use an intention-to-treat approach (ITT) and compare patients in the assigned treatment groups. DISCUSSION: Peer2Me might be an important addition to existing professional psychosocial support services for young cancer patients. At the end of the study, a psycho-oncological intervention for young cancer patients undergoing acute treatment should be available, from which both mentors and mentees could benefit. The long-term continuity of Peer2Me should be ensured through collaboration with different partners. TRIAL REGISTRATION: The study was retrospectively registered on February 4, 2022 at clinicaltrials.gov (NCT05336318).


Assuntos
Neoplasias , Grupo Associado , Apoio Social , Humanos , Adolescente , Adulto Jovem , Neoplasias/psicologia , Neoplasias/terapia , Adulto , Feminino , Masculino , Estudos Prospectivos , Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Alemanha , Ensaios Clínicos Controlados Aleatórios como Assunto
2.
Healthcare (Basel) ; 12(4)2024 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-38391810

RESUMO

As cancer patients often suffer from fear of cancer progression (FoP), valid screening for FoP is of high relevance. The aims of this study were to test psychometric properties of two FoP questionnaires, to determine their relationship to other anxiety-related constructs, and to analyze the impact of sociodemographic and clinical factors on the FoP. Our sample consisted of n = 1733 patients with mixed cancer diagnoses. For measuring FoP, the Fear of Progression questionnaire (FoP-Q-12) and the Concerns About Cancer Recurrence Questionnaire (CARQ-4) were used. The mean scores of the FoP-Q-12 and the CARQ-4 were 30.0 ± 10.4 and 16.1 ± 10.8, respectively, indicating relatively high levels of FoP. Both questionnaires showed excellent internal consistency coefficients, α = 0.895 and α = 0.915, respectively. The correlation between the two FoP questionnaires was r = 0.72. Female patients reported more FoP than male patients (d = 0.84 and d = 0.54, respectively). There was a nonlinear age dependency of FoP, with an increase found in the age range from 18 to 50 years and a decrease in the older age range. Radiation, chemotherapy, and antibody therapy, but not surgery, lead to an increase in FoP. Both questionnaires show good psychometric properties and can be recommended for use in an oncological routine. Female patients and patients in the middle-age range deserve special attention from healthcare providers.

3.
Psychooncology ; 33(1): e6282, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38282213

RESUMO

OBJECTIVE: As social support has been shown to have beneficial effects on coping with cancer, our study aims to close the research gap on perceived social support in adolescent and young adult (AYA) cancer survivors. METHODS: AYAs evaluated their perceived positive social support (PS) and detrimental interactions (DI) by completing the Illness-Specific Social Support Scale (ISSS-8) upon completion of acute treatment (t1) as well as 1 year (t2) and 7 years (t6) later. Temporal changes of social support were examined. Sociodemographic, psychological and medical factors were investigated as predictors for PS and DI by using mixed effects models. RESULTS: We analyzed data from 319 cancer survivors (74.9% women). At baseline, survivors reported an average score of 13.73 (SD = 2.52) for PS and 3.92 (SD = 2.85) for DI. Average perceived PS changed over time, while DI remained stable. Males, AYAs without a partner and AYAs with clinically meaningful anxiety or depression levels reported fewer PS. Higher effort to cope with the disease and clinically significant anxiety and depression levels were associated with more perceived DI. CONCLUSIONS: Existing social networks and perceived social support should be evaluated regularly in AYA-cancer survivorship. The identification and discussion of mental health of AYAs should also be a standard component in survivor consultations both during treatment and follow-up care, as elevated depression and anxiety levels were associated with fewer PS and more perceived DI.


Assuntos
Sobreviventes de Câncer , Neoplasias , Masculino , Humanos , Feminino , Adolescente , Adulto Jovem , Sobreviventes de Câncer/psicologia , Estudos Longitudinais , Neoplasias/terapia , Neoplasias/psicologia , Sobreviventes , Apoio Social
4.
Eur J Oncol Nurs ; 64: 102329, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37172338

RESUMO

PURPOSE: An increasing number of adolescents and young adults (AYA) are becoming cancer survivors and are dealing with long-term effects of the disease and its treatment. We aimed to collect detailed self-reported information about the areas of work, education, and the financial situation of AYA survivors after acute treatment. We further examined sources of support that were perceived as particular helpful. METHOD: We conducted semi-structured interviews with a sample of 11 AYA cancer survivors (on average 5 years from diagnosis; mean age at diagnosis = 25.7 years) that had been recruited for the AYA-Leipzig longitudinal study. Interviews were transcribed and data were analysed using qualitative content analysis. RESULTS: The following themes emerged as relevant: (1) career modifications and job loss, (2) career interruptions and delays, (3) uncertainty in the return-to-work process, (4) reduced work ability, (5) discrimination at the workplace, (6) changes in the personal importance of work and (7) financial burdens. Sources of considerable support included relatives as well as German social security institutions. CONCLUSIONS: Health care providers should address the specific risk of a financial burden and the somewhat complex social legal situation of young adult survivors after cancer diagnosis. AYA cancer survivors need age-specific comprehensive cancer survivorship support programs. These should accompany them in the long term and be targeted to the individual need for career modification or reorientation - even after the completion of cancer treatment and rehabilitation.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Adulto Jovem , Adolescente , Adulto , Estudos Longitudinais , Neoplasias/terapia , Escolaridade , Pesquisa Qualitativa
5.
Front Psychol ; 14: 1127359, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37251020

RESUMO

Objectives: Adolescent and young adult (AYA) breast cancer patients are often faced with sexuality-related problems. Since healthcare providers are often unfamiliar with problems specific to AYA cancer this topic is too little integrated into routine oncological care. The objective of this study was to analyze sexuality, fertility, family planning, family life, and partnership regarding satisfaction and supportive care needs in AYA breast cancer patients. Methods: A total of 139 AYA breast cancer patients were examined twice, 1 year apart. The patients were asked to complete several questionnaires and to answer multiple questions about satisfaction with sexuality, fertility, family planning, family life, and corresponding supportive care needs in these domains. Results: While the patients were largely satisfied with their family life and partnerships, they were less satisfied with their sexuality and family planning. Only small mean score changes were observed in these variables over the course of a year. Being a parent already and having the possibility of further completing family planning were strongly associated with higher satisfaction and lower supportive care needs in these domains. Satisfaction was generally negatively associated with supportive care needs. Older age was predictive of lower satisfaction with sexuality at follow-up. Conclusion: AYA cancer patients deserve special consultations concerning the impact of cancer and treatment on their sexuality and fertility, and it is especially important that women who have yet to complete their family planning be actively offered information and support concerning sexuality and fertility protection before beginning treatment.

6.
J Cancer Surviv ; 16(4): 771-780, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34118000

RESUMO

PURPOSE: Although young adults represent a significant portion of the working population, little is known about the work ability and cognitive impairments in adolescent and young adult (AYA) cancer patients (including the long-term course) following cancer treatment. METHODS: As part of the AYA-Leipzig study, we surveyed AYA cancer survivors (aged 18-39 years at diagnosis; time since diagnosis ≤ 4 years, including all cancer diagnoses) at two time points (t2 = 12 months after t1). Work ability (Work Ability Index, WAI-r) and cognitive impairments (Copenhagen Psychosocial Questionnaire, COPSOQ) were compared at both time points. We analysed predictors for work ability at, on average, 2 years post cancer diagnosis (t2) by using multivariate regression analyses. RESULTS: A total of 502 patients (74.7% women) participated in both measurements. Mean work ability increased significantly from t1 (6.0; SD = 2.3) to t2 (6.8; SD = 2.2) (t = -9.3; p < 0.001). As many as 380 (76%) AYA cancer survivors reported reduced work ability at t1; 1 year later, this still applied to 287 (57%) of them. Decreased work ability (t2) was associated with more cognitive impairment, higher effort coping with the disease, comorbidities, sick leave > 6 months (since diagnosis), and having children (adj R2 = .48). Cognitive impairments occurred in approximately every fifth patient at both surveys. CONCLUSIONS: Achieving maximum work ability is a major challenge for AYAs. Our results show the need for multimodal cancer survivorship and rehabilitation programmes with a special focus on improving cognitive and psychosocial functioning. IMPLICATIONS FOR CANCER SURVIVORS: AYAs with cancer should receive targeted occupational counselling early in the course of the disease.


Assuntos
Sobreviventes de Câncer , Disfunção Cognitiva , Neoplasias , Adaptação Psicológica , Adolescente , Sobreviventes de Câncer/psicologia , Criança , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/etiologia , Feminino , Humanos , Masculino , Neoplasias/terapia , Avaliação da Capacidade de Trabalho , Adulto Jovem
7.
Front Psychol ; 12: 697096, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34539494

RESUMO

Objectives: Having cancer in young adulthood increases the risk of adverse long-term health effects. These risks can be influenced by one's health behavior (HB). The aim of this study is therefore to investigate the presence of health behavior in adolescents and young adults (AYAs) and to identify associated factors. Design: Young cancer patients (18-39 years old at time of diagnosis) were surveyed at baseline and 12 months later via online or as a paper-pencil version. Methods: A spectrum of indicators for HB was assessed via seven items from the Questionnaire of Multiple Health Behavior (MHB). Multiple linear regression analyses were conducted to determine factors associated with patients' HB indicators. Results: Five-hundred and fourteen AYAs (75% women) reported the highest level of health-conscious behavior for "avoidance of consumption of nicotine," "follow medical recommendations," and "being considerate in road traffic." Less health-conscious behavior was reported for "keeping an appropriate and balanced diet" and "physical activity." Significant improvements from baseline to the follow-up were observed for "regularly attending health screening" (Hedges' g = 0.44). The analyzed factors explained up to 10% of the HB indicators. Women reported significantly more health-conscious behavior than men in four out of seven HB indicators. Higher quality of life (QoL) was associated with more health behavior in three out of seven HB indicators. Conclusion: Findings show a predominantly health-conscious lifestyle in AYA cancer patients, though we also found harmful behavior which needs to be better approached-e.g., through improving AYAs' health education. AYA men should be particularly targeted in specific prevention and health promotion measures. Future work should identify other factors associated with HB to evaluate targets for intervention.

8.
Psychooncology ; 30(8): 1311-1321, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33739567

RESUMO

AIM: This study systematically assesses the awareness of, utilisation of and satisfaction with psychosocial care for adolescents and young adult (AYA) cancer survivors in aftercare. METHODS: Survivors between 18 and 39 years were surveyed in aftercare. Awareness of, utilisation of and satisfaction with psychological counselling (PC), social-legal counselling (SLC) and other psychosocial care (OPC) were measured using self-developed questionnaires. Multivariate analyses were conducted to determine factors correlated with awareness and use of psychosocial care. RESULTS: Five hundred and fourteen survivors participated; the mean age at diagnosis was 29.6 years (SD = 6.14). 54% of cancer survivors were aware of PC, 45% of SLC and 24% of OPC. Those who possessed knowledge about these services used it to a considerable extent (63%-74%), and the majority (66%-75%) was highly satisfied. No common factors could be found that increase the likelihood of being aware of these three services (R2  = 0.028-0.138). Female gender (OR = 2.08-2.18) and high anxiety (OR = 1.19-1.38) were identified as common factors that increase the likelihood of utilising psychosocial services (R2  = 0.160-0.395). CONCLUSION: AYA who are aware of psychosocial services in aftercare are motivated to use them and express high satisfaction with use. For the utilisation of psychosocial services, anxiety and female gender can be identified as common factors. The visibility of psychosocial services for aftercare should be increased given the high number of unaware AYA survivors. The active and repeated addressing of psychosocial issues and regular provision of information (e.g., written guides on survivorship) by caregivers should be made a standard of care for AYA cancer survivors.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Assistência ao Convalescente , Feminino , Alemanha , Humanos , Neoplasias/terapia , Satisfação Pessoal , Adulto Jovem
9.
J Adolesc Young Adult Oncol ; 10(2): 226-233, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32746763

RESUMO

Purpose: Although cancer often impacts work issues in patients, little is known about changes in the employment situation of adolescent and young adult (AYA) cancer survivors. Materials and Methods: We surveyed AYA cancer patients (18-39 years at diagnosis, diagnosis ≤4 years) using as set of validated self-report measures. By using multivariate and regression analyses, we analyzed employment status prediagnosis (in retrospect) and return to work (RTW) rate about 2 years postcancer diagnosis and related predictors. We compared work-related characteristics (occupational position, weekly working hours, and type of employment contract) at both time points. Cancer-related financial distress (European Organization for Research Treatment of Cancer-Quality of Life Questionnaire [EORTC QLQ-C30]) was assessed. Results: A total of 505 AYAs (mean age at diagnosis 29.7 years) completed the questionnaire. After an average of 2 years postcancer diagnosis, 83.4% among those being employed at the time of diagnosis (n = 355) had returned to work, 2.8% were on vocational training, 4.5% were unemployed, 4.2% were disabled due to reduced work capacity, and 5.1% were not employed for other reasons. For 158 of 505 AYAs (31.3%), employment status had changed since diagnosis. Significant changes of work-related characteristics were found for the weekly working hours (Matdiagnosis = 35.8; standard deviation [SD] = 7.4; Mt2 = 34.7; SD = 8.2; p = 0.004). Twenty-four percent of the RTW patients and 68% of patients not RTW reported cancer-related financial distress. Patients with comorbid diseases, having hematological cancer or sarcoma, were less likely to RTW. Conclusion: Most AYAs returned to work in the medium term, often by reducing weekly working hours. Since AYAs state significant cancer-related financial distress, even after RTW, it seems particularly relevant to provide financial support and occupational counseling.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Adulto , Emprego , Humanos , Qualidade de Vida , Retorno ao Trabalho , Adulto Jovem
10.
Eur J Oncol Nurs ; 44: 101708, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31874354

RESUMO

PURPOSE: Identification of cancer-specific distress, supportive care needs, and satisfaction with psychosocial care in young adult cancer survivors. METHODS: 117 young adults diagnosed with cancer (AYA), aged between 18 and 39 years old at the time of the survey completed questionnaires to measure cancer-specific distress (QSC-R23) and supportive care needs (SCNS-SF34), as well as their utilization of and satisfaction with psychosocial care after acute medical treatment (0-5 years). Differences between two survivor groups (≤2 years from diagnosis and >2 years from diagnosis) were assessed. RESULTS: Participants reported slight cancer-specific distress (M = 1.22; SD = 0.85) and had the highest scores in the fears domain (M = 1.90; SD = 1.33). AYA survivors ≤2 years from diagnosis (M = 39.82; SD = 26.33) and survivors >2 years from diagnosis (M = 25.68; SD = 27.97) most often reported their psychological supportive care needs as being unmet followed by their health system/information and sexuality support needs. Unmet needs were positively associated with cancer-specific distress (R2 = 0.694). More than half of the AYA cancer survivors in both groups used social legal counselling (N = 67/117, 57.3%) and psychological counselling (N = 65/117, 55.6%) and were mostly highly satisfied with those services. CONCLUSION: It is important to provide psychological supportive care to AYA cancer survivors, a patient group that is very open to taking advantage of such services. This should be taken into account when implementing specific psychosocial follow-up care as early as possible to decrease reported unmet needs. Cancer-related fears seem to remain a salient issue for patients even long after they have completed treatment.


Assuntos
Sobreviventes de Câncer/psicologia , Satisfação Pessoal , Psicoterapia/métodos , Apoio Social , Estresse Psicológico/terapia , Adolescente , Adulto , Assistência ao Convalescente , Feminino , Alemanha , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Inquéritos e Questionários , Adulto Jovem
11.
BMC Cancer ; 19(1): 828, 2019 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-31438895

RESUMO

BACKGROUND: Sexuality is an important aspect of quality of life for adolescent and young adults that remains understudied in cancer patients. Most current knowledge about how cancer and cancer treatments can affect patients' sexuality pertains to reproductive cancer patients (breast, gynecological, male reproductive organs), whereas only little is known about how the disease affects the sex lives of patients with other types of cancer. This study examined sexual satisfaction and sexual supportive care needs among adolescent and young adult cancer patients, with a particular focus on how the type of cancer a person has is associated with these issues differently. METHODS: Five hundred seventy-seven (n = 424 females, 73.5%) patients between 18 and 39 years of age at diagnosis and representing all major tumor entities completed the standardized questionnaire. The analysis addressed the following topics: sexual satisfaction (Life Satisfaction Questionnaire), sexual supportive care needs (Supportive Care Needs Survey), and changes in sexuality (Questions on Life Satisfaction Modules). These topics were tested by mean differences between reproductive and non-reproductive cancer, equivalence testing and regression analyses. RESULTS: About one third of the patients reported being dissatisfied with their sexuality and having supportive care needs in this area. Changes in sexuality were significantly more common in women with reproductive cancers than in those who had other types of cancer (t = - 2.693, p = .007), while both groups had equivalence in scores for sexual satisfaction and sexual supportive care needs. Reproductive cancers are not more associated with deterioration of sexual satisfaction (R2 = .002, p = .243), changes in sexuality (R2 = .006, p = .070) or increased sexual supportive care needs than non-reproductive cancers (R2 = .004, p = .131). CONCLUSIONS: The results indicate that about a third of adolescents and young adults with both reproductive but also with non-reproductive cancer experience sexual dissatisfaction in similar measure. An equal percentage of these patients also express a desire to receive supportive care in this area. Consequently, health care professionals should address issues of sexuality and cancer as a matter of routine when caring for young adults even when patients have a non-reproductive cancer.


Assuntos
Neoplasias/epidemiologia , Neoplasias/etiologia , Comportamento Sexual , Sexualidade , Fatores Etários , Feminino , Humanos , Masculino , Vigilância em Saúde Pública , Qualidade de Vida , Fatores Socioeconômicos , Inquéritos e Questionários , Neoplasias Urogenitais/epidemiologia , Neoplasias Urogenitais/etiologia
12.
Health Qual Life Outcomes ; 17(1): 145, 2019 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-31438983

RESUMO

BACKGROUND: This study compared the perceived social support of young and older adult cancer patients, examining possible influencing factors as well as associations with health-related quality of life. METHODS: A total of 179 young patients (18-39 years) and 200 older adult patients (> 70 years) with haematological malignancies completed questionnaires on their perceived social support (ISSS-8, scales: Positive Support and Detrimental Interactions, range 0-16) and health-related quality of life (EORTC QLQ-C30). Tests for mean differences, correlations and regression analyses to determine associated variables of social support were performed. RESULTS: No difference was reported between young (M = 13.40, SD = 2.81) and older adult patients (M = 13.04, SD = 3.82; p = .313) for Positive Support. However, young patients (M = 4.16, SD = 3.10) reported having had more Detrimental Interactions than older patients did (M = 1.63, SD = 2.42; p < .001, Cohen's d = .910). Comparison of the EORTC QLQ-C30 Function scales showed poorer outcomes for young patients on Emotional, Cognitive and Social Functions and a higher outcome on Physical Function compared with older adult patients. Regression analyses indicated that age (young vs. older adult patients) significantly explained proportions of variance in all models, with young age having a negative impact on Emotional, Cognitive and Social Functions and a positive impact on Physical and Role Functions compared with old age. Significant associations between Detrimental Interactions and all the scales examined except Cognitive Function were found. CONCLUSIONS: The difference in negative perceptions of social support in young vs. older adult patients and its impact on health-related quality of life emphasises the necessity of differentiating between positive and negative social support. Negative interactions should be addressed through psychosocial care, particularly with young cancer patients.


Assuntos
Neoplasias Hematológicas/psicologia , Qualidade de Vida , Apoio Social , Adulto , Fatores Etários , Idoso , Feminino , Humanos , Masculino , Inquéritos e Questionários
13.
Psychooncology ; 28(10): 2083-2090, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31397041

RESUMO

OBJECTIVE: Cancer in young adulthood is a nonnormative and critical life event. The experience of having cancer can have a strong impact on the mental health of young adults. This study investigated anxiety and depression in young adult cancer patients, examining changes over time and determining associated factors. METHODS: Young cancer patients (18-39 years at time of diagnosis, diagnosis less than 4 years) were examined. Anxiety and depression were measured at two time points (t2 = 12 months after t1) using the Hospital Anxiety and Depression Scale (HADS). Regression analyses were conducted to determine whether sociodemographic, medical, and/or psychosocial factors (social support, adjustment to the illness, unmet supportive care needs) were associated with patients' anxiety and depression. RESULTS: Five hundred fourteen young cancer patients (mean age 29.6 years, 75.1% women) completed both questionnaires. A higher proportion showed elevated levels of anxiety (t1: 42.2%; t2: 45.3%) than of depression (t1: 16.9%; t2: 17.7%), and no significant changes in anxiety and depression levels over time were observed. Psychosocial factors explained a major proportion of the variances for anxiety and depression levels at both time points (adjusted R2 between.50 and.59). Furthermore, significant associations were found for anxiety (t1) with gender (women↑); anxiety (t2) and depression (t2) with sick leave (sick leave yes↑); depression (t2) with time since diagnosis (longer time↑). CONCLUSION: Psychological distress among adolescents and young adults (AYA) manifests particularly as anxiety. Strong associations between anxiety/depression and psychosocial factors, as well as the stability of psychological distress over time, clearly illustrate the need for psycho-oncological care in this patient group.


Assuntos
Ansiedade/psicologia , Depressão/psicologia , Neoplasias/psicologia , Apoio Social , Adolescente , Adulto , Ansiedade/etiologia , Depressão/etiologia , Feminino , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Neoplasias/complicações , Psico-Oncologia , Inquéritos e Questionários , Adulto Jovem
14.
J Cancer Surviv ; 13(4): 611-619, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31273638

RESUMO

PURPOSE: Coping with cancer at a young adult age (AYA) is a challenge for many patients and raises support needs. We aim to examine unmet supportive care needs and to investigate predictors of and changes in unmet needs over time. METHODS: We surveyed AYAs (18-39 years at time of diagnosis, diagnosis < 4 years) at two time points (t2 = 12 months after t1) using the Supportive Care Needs Survey (SCNS-SF34) among other validated measures. We conducted multiple hierarchical regressions to identify sociodemographic, medical and psychosocial predictors of unmet needs. RESULTS: A total of 514 AYAs (386 women) with a mean age of 29.6 years participated at both times. Psychological needs (Mt1 = 35.7; Mt2 = 32.09; p = 0.001) and informational needs (Mt1 = 32.18; Mt2 = 29.04; p = 0.021) were the most often reported unmet needs at both measurements and decreased slightly at t2. All other SCNS domains, except for patient care, remained stable over time. Higher supportive needs were associated with greater levels of effort to cope with the disease at both times in all domains. Older age and female gender were significantly associated with two and one of six domains, respectively, at t1 and t2. CONCLUSIONS: AYAs reported primarily unmet psychological and informational needs, which were stable over time and indicated that AYAs do not have sufficient access to the support they need. The degree of effort to cope with cancer plays a key role in terms of unmet support needs. IMPLICATIONS FOR CANCER SURVIVORS: Regular screening for this variable in acute and especially follow-up care settings could pave the way for clinicians to offer more targeted support.


Assuntos
Sobreviventes de Câncer , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde , Neoplasias/epidemiologia , Neoplasias/terapia , Cuidados Paliativos , Adaptação Psicológica/fisiologia , Adolescente , Adulto , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Seguimentos , Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/tendências , Humanos , Masculino , Neoplasias/psicologia , Cuidados Paliativos/organização & administração , Cuidados Paliativos/estatística & dados numéricos , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
15.
J Adolesc Young Adult Oncol ; 8(3): 297-303, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30789284

RESUMO

Purpose: Cancer-related fatigue (CRF) is a highly burdensome and long-lasting symptom of cancer and its therapy. This study aims to examine the severity of CRF in its different dimensions and to assess medical and sociodemographic factors associated with CRF in young adults with cancer (adolescents and young adults [AYAs]). Methods: Patients with malignant cancer (diagnosed within the last 4 years) aged 18-39 years at diagnosis were assessed. CRF was measured using the European Organisation for Research and Treatment of Cancer Quality of Life Fatigue Module (EORTC QLQ-FA12) Questionnaire. Sociodemographic and medical data were collected with self-report questionnaires. Descriptive analyses, cluster analysis, and multiple regression analysis were used to examine CRF in AYAs. Results: In total, n = 577 patients were included. Respondents' fatigue scores were highest for the physical subscale (mean = 45.6; standard deviation [SD] = 28.2), followed by the emotional (mean = 26.7; SD = 28.8) and cognitive dimensions (mean = 19.7; SD = 22.7). Female participants, patients with an additional disease, and patients with financial problems resulting from having cancer reported significantly higher fatigue scores for all three of the subscales (R2 range: 0.10-0.22). Testicular cancer patients had the lowest CRF scores for every dimension. Breast and gynecological cancer patients had the highest emotional and cognitive fatigue scores. Conclusion: Medical variables such as cancer site and therapy scheme seem to have little influence. Caregivers should assess CRF in AYAs independent of their medical characteristics. Reducing additional burdens may represent a way of reducing CRF in AYA cancer patients.


Assuntos
Fadiga/etiologia , Neoplasias/complicações , Qualidade de Vida/psicologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem
16.
Eur J Oncol Nurs ; 36: 26-31, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-30322506

RESUMO

PURPOSE: Studies among young adult cancer patients are necessary to improve their psychosocial care situation. However, achieving high response rates in this group is challenging. This study focused on the psychosocial life and supportive care situation of young adult cancer patients, and reports the recruitment and retention strategies, sample characteristics and preferences. METHOD: Participants (aged 18-39  years at diagnosis) diagnosed within the preceding 4 years were recruited from various clinical settings and surveyed at two time points. RESULTS: In total, 514 participants completed both surveys. Most patients were recruited from rehabilitation clinics (39.5%) and tumour registries (30.2%). Internet-based self-registration resulted in the highest yield of participants. Participants in inpatient (rehabilitation) treatment preferred to complete a hard copy of the questionnaire at baseline (59.7%), but a strong preference for using the online form was found at follow-up (74.5%). The distribution of diagnoses in the sample was almost comparable to the national incidence rates in Germany. Males and patients with melanoma were slightly under-represented. CONCLUSIONS: Recruitment of a large sample of young adult cancer patients is possible but requires intensive recruitment efforts, particularly in Germany. Social media and age-specific approaches were found to be effective for recruiting and retaining participants. Giving patients the option to complete a hard copy or the online version of the questionnaire, especially during inpatient treatment, may optimise participation rates. Psychosocial research and support programmes for young adults should consider that women are probably more likely to participate in psychosocial (research) programmes than men.


Assuntos
Internet , Neoplasias/psicologia , Seleção de Pacientes , Adolescente , Adulto , Fatores Etários , Feminino , Alemanha , Humanos , Estudos Longitudinais , Masculino , Participação do Paciente , Preferência do Paciente , Inquéritos e Questionários , Adulto Jovem
17.
Cancer ; 124(22): 4374-4382, 2018 11 15.
Artigo em Inglês | MEDLINE | ID: mdl-30198085

RESUMO

BACKGROUND: Being diagnosed with and treated for cancer often has a strong impact on the life satisfaction (LS) of adolescents and young adults (AYAs). The current study investigated LS in AYA patients with cancer and determined associated factors. METHODS: Young patients (those aged 18-39 years at the time of diagnosis) with all malignant cancer sites and with a diagnosis made within the last 4 years were assessed. LS was measured at 2 measuring time points using the Questions on Life Satisfaction (FLZ-M). Differences in the FLZ-M and the 10 subdomains (friends/acquaintances, leisure activities/hobbies, health, income/financial security, work/profession, housing situation, family life, children/family planning, partnership, and sexuality) between the 2 time points were calculated. Multiple regression analyses were conducted to determine factors associated with LS. RESULTS: A total of 514 patients (386 of whom were women) with a mean age at diagnosis of 29.6 years participated at both measurements. LS increased significantly in 5 domains with a small effect (Hedges g, 0.17) noted over time. The subdomains with the lowest LS were financial and professional situation, family planning, and sexuality. Significant associations with LS were found at baseline for sociodemographic, medical, and psychosocial variables (explained variance [R2 ]baseline = 0.41). At follow-up, psychosocial factors (positive social support, not having detrimental interactions, and lower perceived adjustment to the disease) remained most important for higher LS controlled for LS at baseline. Neither sociodemographic (except partnership) nor medical factors played a role (R2follow-up = 0.54). CONCLUSIONS: Of all the variables examined, social support was found to be the most decisive factor associated with LS at both time points. With regard to LS, social support and adjustment to illness should be given more consideration in the medical care of AYA patients with cancer.


Assuntos
Neoplasias/psicologia , Qualidade de Vida/psicologia , Sexualidade/psicologia , Adolescente , Adulto , Serviços de Planejamento Familiar , Feminino , Humanos , Estudos Longitudinais , Masculino , Neoplasias/diagnóstico , Satisfação Pessoal , Estudos Prospectivos , Análise de Regressão , Apoio Social , Adulto Jovem
18.
Geburtshilfe Frauenheilkd ; 78(6): 567-584, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29962516

RESUMO

AIM: The aim of this official guideline published by the German Society of Gynecology and Obstetrics (DGGG) and coordinated with the German Society of Urology (DGU) and the German Society of Reproductive Medicine (DGRM) is to provide consensus-based recommendations, obtained by evaluating the relevant literature, on counseling and fertility preservation for prepubertal girls and boys as well as patients of reproductive age. Statements and recommendations for girls and women are presented below. Statements or recommendations for boys and men are not the focus of this guideline. METHODS: This S2k guideline was developed at the suggestion of the guideline commission of the DGGG, DGU and DGRM and represents the structured consensus of representative members from various professional associations (n = 40). RECOMMENDATIONS: The guideline provides recommendations on counseling and fertility preservation for women and girls which take account of the patient's personal circumstances, the planned oncologic therapy and the individual risk profile as well as the preferred approach for selected tumor entities.

19.
Health Qual Life Outcomes ; 16(1): 125, 2018 Jun 15.
Artigo em Inglês | MEDLINE | ID: mdl-29903021

RESUMO

BACKGROUND: Young adult patients with cancer have to deal with their disease in an eventful phase of life. A common side effect of cancer and its treatment is cancer-related fatigue (CRF), a phenomenon which can thwart successful coping with developmental tasks. The aims of this study were to assess the psychometric properties of the EORTC QLQ-FA12, a new instrument for assessing physical, emotional and cognitive fatigue, in young adults with cancer, and to propose a cut-off value that indicates a need for further more specific diagnostics. METHODS: In a sample of young adults who were first diagnosed with cancer between the ages of 18 and 39 years old, we assess the composite and item reliabilities as well as discriminant validity of the subscales for the EORTC QLQ-FA12. We also discuss two possible ways to calculate a summarizing score when conducting a receiver operating characteristic (ROC) analysis to find the cut-off value. RESULTS: The EORTC QLQ-FA12 fit the sample (CFI = 0.96, SRMR = 0.04), had discriminant validity regarding its subscales and every subscale showed convergent validity (composite reliabilities were 0.92 for physical, 0.89 for emotional and 0.74 for cognitive fatigue). The sum of the first ten items with a range of 0 to 30 revealed a cut-off value of twelve or more with 91% sensitivity and 77% specificity. CONCLUSION: The new instrument EORTC QLQ-FA12 is able to distinguish between physical, emotional, and cognitive fatigue in young adult patients. It enables us to study different concepts of general fatigue without the need for additional items, and can be used as a screening instrument for young adults. Future research should investigate the multidimensional character of CRF.


Assuntos
Fadiga/psicologia , Neoplasias/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Adaptação Psicológica , Adolescente , Adulto , Fadiga/classificação , Fadiga/diagnóstico , Feminino , Humanos , Masculino , Fadiga Mental/diagnóstico , Fadiga Mental/psicologia , Exame Físico , Psicometria , Curva ROC , Reprodutibilidade dos Testes , Adulto Jovem
20.
Psychother Psychosom Med Psychol ; 67(2): 76-82, 2017 Feb.
Artigo em Alemão | MEDLINE | ID: mdl-28288497

RESUMO

Purpose: To examine the impact of cancer on work and education for AYA. Collect information about AYA's return to work/return to study. Methods: 18 AYA (10 female) aged 18 to 39 (m=27 years) at time of diagnosis completed a semi-structured interview. Qualitative content analysis was used to generate results. Results: 11 of 18 AYA had already returned to work/study. Flexible structures and emotional support of colleagues and managers were reported being helpful. 10 AYA planed or had already reduced job tasks, hours of work or further education. This was mostly compelled by physical disabilities due to cancer or treatment. Most AYA asked for more support within the social insurance system. Conclusions: Cancer often leads to changes in work or education. More social and vocational counseling to support AYA's rehabilitation process seems to be necessary.


Assuntos
Escolaridade , Neoplasias/psicologia , Neoplasias/reabilitação , Retorno ao Trabalho , Adolescente , Adulto , Estudos Transversais , Avaliação da Deficiência , Feminino , Humanos , Entrevista Psicológica , Masculino , Pesquisa Qualitativa , Meio Social , Apoio Social , Orientação Vocacional , Adulto Jovem
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