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INTRODUCTION: Amidst the rising number of cancer survivors and personnel shortages, optimisation of follow-up strategies is imperative, especially since intensive follow-up does not lead to survival benefits. Understanding patient preferences and identifying the associated patient profiles is crucial. Coping style may be a key determinant in achieving this. Our study aims to evaluate preferences, identify coping styles and their associated factors, and explore the association between coping style and patients' preferences in colorectal cancer (CRC) follow-up. METHODS: In a prospective multicentre implementation study, patients completed the Threatening Medical Situations Inventory (TMSI) to determine their coping style. Simultaneously patients choose their follow-up preferences for the CRC trajectory regarding frequency of tumour marker determination, location of blood sampling, and manner of contact. RESULTS: A total of 188 patients completed the TMSI questionnaire after inclusion. A more intensive follow-up was preferred by 71.5% of patients. Of all patients, 52.0% had a coping style classified as 'blunting' and 34.0% as 'monitoring'. Variables such as a younger age, female gender, higher educational level, and lower ASA scores were associated with having higher monitoring scores. However, there were no significant associations between follow-up preferences and patients' coping styles. CONCLUSION: This study suggests that none of the provided options in a patient-led follow-up are unsuitable for patients who underwent curative surgery for primary CRC, based on coping style determined at baseline. Low-intensity surveillance after curative resection of CRC may, therefore, be suitable for a wide range of patients independent of coping styles.
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Adaptação Psicológica , Sobreviventes de Câncer , Neoplasias Colorretais , Preferência do Paciente , Humanos , Feminino , Masculino , Neoplasias Colorretais/psicologia , Pessoa de Meia-Idade , Estudos Prospectivos , Idoso , Seguimentos , Sobreviventes de Câncer/psicologia , Inquéritos e Questionários , Adulto , Cognição , Idoso de 80 Anos ou mais , Capacidades de EnfrentamentoRESUMO
There has been growing interest in the use of real-world data (RWD) to address clinically and policy-relevant (research) questions that cannot be answered with data from randomized controlled trials (RCTs) alone. This is, for example, the case in rare malignancies such as sarcomas as limited patient numbers pose challenges in conducting RCTs within feasible timeliness, a manageable number of collaborators, and statistical power. This narrative review explores the potential of RWD to generate real-world evidence (RWE) in sarcoma research, elucidating its application across different phases of the patient journey, from prediagnosis to the follow-up/survivorship phase. For instance, examining electronic health records (EHRs) from general practitioners (GPs) enables the exploration of consultation frequency and presenting symptoms in primary care before a sarcoma diagnosis. In addition, alternative study designs that integrate RWD with well-designed observational RCTs may offer relevant information on the effectiveness of clinical treatments. As, especially in cases of ultrarare sarcomas, it can be an extreme challenge to perform well-powered randomized prospective studies. Therefore, it is crucial to support the adaptation of novel study designs. Regarding the follow-up/survivorship phase, examining EHR from primary and secondary care can provide valuable insights into identifying the short- and long-term effects of treatment over an extended follow-up period. The utilization of RWD also comes with several challenges, including issues related to data quality and privacy, as described in this study. Notwithstanding these challenges, this study underscores the potential of RWD to bridge, at least partially, gaps between evidence and practice and holds promise in contributing to the improvement of sarcoma care.
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Registros Eletrônicos de Saúde , Clínicos Gerais , Sarcoma , Humanos , Sarcoma/terapia , Sarcoma/diagnóstico , Coleta de Dados/métodos , Ensaios Clínicos como Assunto , Estudos ProspectivosRESUMO
AIM: Follow-up for colorectal cancer (CRC) necessitates regular monitoring of carcinoembryonic antigen (CEA) at the hospital. Capillary home-based blood collection, including minimally invasive techniques such as lancet sampling or an automated upper arm device (TAP-II), has the potential to replace a significant portion of hospital-based blood sampling, thereby enhancing self-reliance and quality of life. The objectives of this study were to assess the feasibility, reliability and preference for CEA blood collection. METHODS: Baseline venous and capillary (by lancet and TAP-II) blood samples were collected from 102 participants, including 20 CRC patients with elevated CEA levels, 60 CRC patients undergoing postoperative outpatient monitoring and 20 healthy volunteers. The second group performed capillary blood collections at home on two consecutive follow-up appointments and subsequently sent them to the hospital. Satisfaction was assessed via patient reported outcome measures on pain, burden, ease of use and preference. RESULTS: The Pearson's correlation test of all usable samples resulted in a linear coefficient of 0.998 (95% CI 0.997-0.998) for the TAP-II method and 0.997 (95% CI 0.996-0.998) for the lancet method, both compared to venipuncture. Following the initial blood collection, 86% of the participants (n = 102) favoured the TAP-II, rating it as the least painful and burdensome option. After two home-based blood samples, the preference for the TAP-II method persisted, with 64% of the patients endorsing its use. CONCLUSION: This study demonstrated the feasibility of home-based capillary sampling of CEA. The TAP-II blood collection is the most reliable method and is preferred by patients over venipuncture and lancet sampling.
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Coleta de Amostras Sanguíneas , Antígeno Carcinoembrionário , Neoplasias Colorretais , Estudos de Viabilidade , Satisfação do Paciente , Humanos , Antígeno Carcinoembrionário/sangue , Feminino , Neoplasias Colorretais/sangue , Neoplasias Colorretais/cirurgia , Estudos Prospectivos , Masculino , Pessoa de Meia-Idade , Idoso , Coleta de Amostras Sanguíneas/métodos , Reprodutibilidade dos Testes , Adulto , Capilares , Idoso de 80 Anos ou mais , Medidas de Resultados Relatados pelo Paciente , Qualidade de VidaRESUMO
PURPOSE: To (1) identify the prevalence of sleep problems in cancer survivors across cancer types and survivorship durations compared to a normative population and (2) determine demographic, clinical, lifestyle, and psychosocial determinants. METHOD: Cancer survivors diagnosed between 2008 and 2015 (N = 6736) and an age- and sex-matched normative cohort (n = 415) completed the single sleep item of the EORTC QLQ-C30: Have you had trouble sleeping? Participants who responded with "quite a bit"/ "very much" were categorized as poor sleepers. A hierarchical multinomial logistic regression was used to identify determinants of sleep problems. RESULT: The prevalence of sleep problems was higher in cancer survivors (17%) compared to the normative population (11%) (p < 0.001), varied across cancer types (10-26%) and did not vary based on survivorship duration. The full model showed that survivors who were female (adjusted odds ratio (AOR) 2.26), overweight (AOR 1.50), had one (AOR 1.25) and ≥ 2 comorbidities (AOR 2.15), were former (AOR 1.30) and current (AOR 1.53) smokers and former alcohol drinkers (AOR 1.73), had a higher level of fatigue (AOR 1.05), anxiety (AOR 1.14), depression (AOR 1.11), and cognitive illness perceptions (AOR 1.02), had a higher odds for sleep problems. Higher education compared to lower education (AOR 0.67), having a partner (AOR 0.69), and obesity compared to normal BMI (AOR 0.86) were protective to sleep problems as well as high physical activity before adjusting for psychological factors (AOR 0.91). CONCLUSION: Modifiable determinants of sleep problems include physical activity, fatigue, anxiety, depression, and illness perception. IMPLICATIONS FOR CANCER SURVIVORS: Sleep problems after cancer deserve clinical attention. They may be improved by addressing modifiable lifestyle factors: increasing physical activity, stop smoking, and reducing alcohol consumption. As fatigue, depression, and illness perception seem related to sleep problems, lifestyle improvements may also improve these outcomes.
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BACKGROUND: Limited understanding exists regarding early sarcoma symptoms presented during general practitioner (GP) consultations. The study explores GP visit patterns and recorded diagnoses in the 12 months preceding sarcoma diagnosis. METHODS: Sarcoma cases diagnosed from 2010 to 2020 were identified through the Netherlands Cancer Registry alongside general practice data. Sarcoma cases were age and gender matched to cancer-free controls (2:1 or 1:1 ratio). RESULTS: A total of 787 individuals with soft-tissue sarcoma (STS) and 188 individuals with bone sarcoma (BS) were identified. There was a significant difference in monthly GP contacts from 4 months to the last month before STS diagnosis, and 2 months before BS diagnosis between cases and controls. Most prevalent diagnoses recorded by the GP for STS cases included musculoskeletal neoplasm (26.6%), uncomplicated hypertension (15.6%), and cystitis/other urinary infections (12.2%). For BS cases, musculoskeletal neoplasm (42.8%), knee symptoms/complaints (9.7%), and shoulder symptoms/complaints (9.7%) were most frequent. CONCLUSIONS AND DISCUSSION: A significant difference in GP contacts between cases and controls preceding sarcoma diagnosis. STS cases were predominantly diagnosed with nonspecific symptoms, whereas BS cases with diagnoses more suggestive of BS. Better understanding of the prediagnostic trajectory could aid GPs in early identification of sarcoma.
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Clínicos Gerais , Sarcoma , Humanos , Masculino , Feminino , Sarcoma/diagnóstico , Sarcoma/terapia , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Adulto , Estudos de Casos e Controles , Idoso , Sistema de Registros , Neoplasias Ósseas/diagnóstico , Neoplasias Ósseas/terapia , Encaminhamento e Consulta/estatística & dados numéricos , Seguimentos , Neoplasias de Tecidos Moles/diagnóstico , Neoplasias de Tecidos Moles/terapia , Medicina Geral , Prognóstico , Adulto JovemRESUMO
The EuroQoL 5-Dimension 5-Level questionnaire (EQ-5D-5L) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) are commonly used Patient-Reported Outcome Measures (PROMs) for breast cancer. This study assesses and compares the internal responsiveness of the EQ-5D-5L and EORTC QLQ-C30 in Dutch breast cancer patients during the first year post-surgery. Women diagnosed with breast cancer who completed the EQ-5D-5L and EORTC QLQ-C30 pre-operatively (T0), 6 months (T6), and 12 months post-surgery (T12) were included. Mean differences of the EQ-5D-5L and EORTC QLQ-C30 between baseline and 6 months (delta 1) and between baseline and 12 months post-surgery (delta 2) were calculated and compared against the respective minimal clinically important differences (MCIDs) of 0.08 and 5. Internal responsiveness was assessed using effect sizes (ES) and standardized response means (SRM) for both deltas. In total, 333 breast cancer patients were included. Delta 1 and delta 2 for the EQ-5D-5L index and most scales of the EORTC QLQ-C30 were below the MCID. The internal responsiveness for both PROMs was small (ES and SRM < 0.5), with greater internal responsiveness for delta 1 compared to delta 2. The EQ-5D-5L index showed greater internal responsiveness than the EORTC QLQ-C30 Global Quality of Life scale and summary score. These findings are valuable for the interpretation of both PROMs in Dutch breast cancer research and clinical care.
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Importance: Desmoid tumor (DT) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Previously, surgery was the standard primary treatment modality; however, within the past decade, a paradigm shift toward less-invasive management has been introduced and an effort to harmonize the strategy among clinicians has been made. To update the 2020 global evidence-based consensus guideline on the management of patients with DT, the Desmoid Tumor Working Group convened a 1-day consensus meeting in Milan, Italy, on June 30, 2023, under the auspices of the European Reference Network on Rare Adult Solid Cancers and Sarcoma Patient Advocacy Global Network, the Desmoid Foundation Italy, and the Desmoid Tumor Research Foundation. The meeting brought together over 90 adult and pediatric sarcoma experts from different disciplines as well as patients and patient advocates from around the world. Observations: The 2023 update of the global evidence-based consensus guideline focused on the positioning of local therapies alongside surgery and radiotherapy in the treatment algorithm as well as the positioning of the newest class of medical agents, such as γ-secretase inhibitors. Literature searches of MEDLINE and Embase databases were performed for English-language randomized clinical trials (RCTs) of systemic therapies to obtain data to support the consensus recommendations. Of the 18 full-text articles retrieved, only 4 articles met the inclusion criteria. The 2023 consensus guideline is informed by a number of new aspects, including data for local ablative therapies such as cryotherapy; other indications for surgery; and the γ-secretase inhibitor nirogacestat, the first representative of the newest class of medical agents and first approved drug for DT. Management of DT is complex and should be carried out exclusively in designated DT referral centers equipped with a multidisciplinary tumor board. Selection of the appropriate strategy should consider DT-related symptoms, associated risks, tumor location, disease morbidities, available treatment options, and preferences of individual patients. Conclusions and Relevance: The therapeutic armamentarium of DT therapy is continually expanding. It is imperative to carefully select the management strategy for each patient with DT to optimize tumor control and enhance quality of life.
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Fibromatose Agressiva , Humanos , Fibromatose Agressiva/terapia , Fibromatose Agressiva/patologia , Fibromatose Agressiva/tratamento farmacológicoRESUMO
BACKGROUND: With 5-year survival rates > 85%, gaining insight into the long-term and late health-related conditions of cancer survivors diagnosed in adolescence and young adulthood is of utmost importance to improve their quantity and quality of survival. This study examined the prevalence of and factors associated with, patient-reported health-related conditions and their latency times among long-term adolescent and young adult (AYA) cancer survivors. METHODS: AYA cancer survivors (5-20 years after diagnosis) were identified by the population-based Netherlands Cancer Registry (NCR), and invited to participate in the SURVAYA questionnaire study. Participants reported the prevalence and date of diagnosis of health-related conditions. Clinical data were retrieved from the NCR. RESULTS: Three thousand seven hundred seventy-six AYA cancer survivors (response rate 33.4%) were included for analyses. More than half of the AYAs (58.5%) experienced health-related conditions after their cancer diagnosis, of whom 51.4% were diagnosed with two or more conditions. Participants reported conditions related to vision (15.0%), digestive system (15.0%), endocrine system (14.1%), cardiovascular system (11.7%), respiratory system (11.3%), urinary tract system (10.9%), depression (8.6%), hearing (7.4%), arthrosis (6.9%), secondary malignancy (6.4%), speech-, taste and smell (4.5%), and rheumatoid arthritis (2.1%). Time since diagnosis, tumor type, age at diagnosis, and educational level were most frequently associated with a health-related condition. CONCLUSIONS: A significant proportion of long-term AYA cancer survivors report having one or more health-related conditions. IMPLICATIONS FOR CANCER SURVIVORS: Future research should focus on better understanding the underlying mechanisms of, and risk factors for, these health-related conditions to support the development and implementation of risk-stratified survivorship care for AYA cancer survivors to further improve their outcomes. CLINICAL TRIALS REGISTRATION: NCT05379387.
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PURPOSE: Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. METHODS: Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41 years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. RESULTS: We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) self-conscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. CONCLUSION: This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. IMPLICATIONS FOR CANCER SURVIVORS: This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.
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PURPOSE: This study aims to (1) explore the prevalence of patient-reported financial difficulties among GIST patients, differentiating between those currently undergoing tyrosine kinase inhibitor (TKI) treatment and those who are not; (2) investigate associations between financial difficulties and sociodemographic and clinical characteristics, work, cancer-related concerns, anxiety and depression and (3) study the impact of financial difficulties on health-related quality of life. METHODS: A cross-sectional study was conducted among Dutch GIST patients diagnosed between 2008 and 2018, who were invited to complete a one-time survey between September 2020 and June 2021. Patients completed nine items of the EORTC item bank regarding financial difficulties, seven work-related questions, the Hospital Anxiety and Depression Scale, Cancer Worry Scale and EORTC QLQ-C30. RESULTS: In total, 328 GIST patients participated (response rate 63.0%), of which 110 (33.8%) were on TKI treatment. Patients currently treated with TKIs reported significantly more financial difficulties compared to patients not on TKIs (17.3% vs 8.7%, p = 0.03). The odds of experiencing financial difficulties was 18.9 (95% CI 1.7-214.7, p = 0.02) times higher in patients who were less able to work due to their GIST diagnosis. Patients who experienced financial difficulties had significantly lower global quality of life and functioning, and more frequently reported psychological symptoms as compared to patients who did not report financial difficulties. CONCLUSION: Even in a country where the costs of TKIs and follow-up care are covered by health insurance, financial difficulties can be present in GIST patients, especially in patients on TKI treatment, and may negatively influence the quality of life.
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Neoplasias Gastrointestinais , Tumores do Estroma Gastrointestinal , Humanos , Tumores do Estroma Gastrointestinal/tratamento farmacológico , Tumores do Estroma Gastrointestinal/epidemiologia , Estudos Transversais , Qualidade de Vida , Países Baixos/epidemiologia , Inibidores de Proteínas Quinases/uso terapêutico , Neoplasias Gastrointestinais/patologiaRESUMO
BACKGROUND: This systematic review evaluates reporting of patient-reported outcomes (PROs) within randomized clinical trials (RCTs) for advanced soft tissue sarcoma (STS) patients. METHODS: A systematic literature search from January 2000 - August 2022 was conducted for phase II/III RCTs evaluating systemic treatments in adult patients with advanced STS. Quality of PRO reporting was assessed using the CONSORT PRO extension. RESULTS: Out of 7294 abstracts, 59 articles were included; comprising 43 RCTs. Only 15 RCTs (35%) included PROs, none as primary endpoints. Only 10 of these RCTs reported PROs, either in the primary (6/10) or secondary publication (1/10) or in both (3/10), with a median time interval of 23 months. The median CONSORT PRO adherence score was 5.5/14, with higher scores in publications focusing exclusively on PROs. CONCLUSION: These results highlight the need for improved and more consistent PRO reporting to inform patient care in the setting of advanced STS.
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Medidas de Resultados Relatados pelo Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto , Sarcoma , Adulto , Humanos , Sarcoma/tratamento farmacológico , Sarcoma/terapiaRESUMO
BACKGROUND: The use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended 'Write In three Symptoms/Problems (WISP)' instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom. METHODS: We conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their understanding about WISP. Proportions were used to summarize patient responses obtained from interviews and WISP. RESULTS: From the seven instruments identified in the literature, only the free text collected from the PRO-CTAE has been analyzed previously. In our study, 161 cancer patients participated in the pre-testing and interviews (50% in active treatment). Qualitative interviews showed high acceptability of WISP. Among the 295 symptoms/problems reported using WISP, skin problems, sore mouth and bleeding were more prevalent in patients in active treatment, whereas numbness/tingling, dry mouth and existential problems were more prevalent in patients in palliative care/treatment. CONCLUSIONS: The EORTC WISP instrument was found to be acceptable and useful for symptom assessment in cancer patients. WISP improves the identification of symptoms/problems not assessed by cancer-generic questionnaires and therefore, we recommend its use alongside the EORTC questionnaires.
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Neoplasias , Qualidade de Vida , Humanos , Avaliação de Sintomas , Cuidados Paliativos , Dor , Inquéritos e QuestionáriosRESUMO
Background: This study aims to (1) investigate the prevalence of anxiety, depression and severe fear of cancer recurrence or progression in gastrointestinal stromal tumor (GIST) patients treated in a curative or palliative setting, (2) compare their prevalence with a norm population, (3) identify factors associated with anxiety, depression and severe fear, and (4) study the impact of these psychological symptoms on health-related quality of life (HRQoL). Methods: In a cross-sectional study, GIST patients completed the Hospital Anxiety and Depression Scale, Cancer Worry Scale, and EORTC QLQ-C30. Results: Of the 328 patients, 15% reported anxiety, 13% depression, and 43% had severe fear. Anxiety and depression levels were comparable between the norm population and patients in the curative setting, but significantly higher for patients in the palliative setting. Having other psychological symptoms was associated with anxiety, while current TKI treatment and anxiety were associated with depression. Severe fear was associated with age, female sex, palliative treatment setting, anxiety, and GIST-related concerns. Conclusion: GIST patients treated in a palliative setting are more prone to experience psychological symptoms, which can significantly impair their HRQoL. These symptoms deserve more attention in clinical practice, in which regular screening can be helpful, and appropriate interventions should be offered.(AU)
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Humanos , Masculino , Feminino , Medo , Ansiedade , Depressão , Tumores do Estroma Gastrointestinal , Prevalência , Pacientes/psicologia , Países Baixos , Estudos Transversais , Escala de Ansiedade Frente a Teste , Inquéritos e Questionários , Psicologia Clínica , Medidas de Resultados Relatados pelo PacienteRESUMO
PURPOSE: The accessibility of cancer care faces challenges due to the rising prevalence of colorectal cancer (CRC) coupled with a shrinkage of healthcare professionals-known as the double aging phenomenon. To ensure sustainable and patient-centred care, innovative solutions are needed. This study aims to assess the needs of CRC patients regarding their follow-up care. METHODS: This study uses a mixed-method approach divided in three phases. The initial phase involved focus group sessions, followed by semi-structured interviews to identify patients' needs during follow-up. Open analysis was done to define main themes and needs for patients. In the subsequent quantitative phase, a CRC follow-up needs questionnaire was distributed to patients in the follow-up. RESULTS: After two focus groups (n = 14) and interviews (n = 5), this study identified six main themes. Findings underscore the importance of providing assistance in managing both physical and mental challenges associated with cancer. Participants emphasised the need of a designated contact person and an increased focus on addressing psychological distress. Furthermore, patients desire individualised feedback on quality of life questionnaires, and obtaining tailored information. The subsequent questionnaire (n = 96) revealed the priority of different needs, with the highest priority being the need for simplified radiology results. A possible approach to address a part of the diverse needs could be the implementation of a platform; nearly 70% of patients expressed interest in the proposed platform. CONCLUSIONS: CRC patients perceive substantial room for improvement of their follow-up care. Findings can help to develop a platform fulfilling the distinct demands of CRC patients during follow-up.
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Neoplasias Colorretais , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Seguimentos , Grupos Focais , Assistência Centrada no Paciente , Neoplasias Colorretais/terapia , Neoplasias Colorretais/psicologiaRESUMO
BACKGROUND: The aim of this population-based registry study was to examine the impact of cancer on employment outcomes in adolescent and young adult (AYA) survivors and their partners and associated sociodemographic and clinical characteristics. METHODS: A total of 2456 AYA cancer patients, diagnosed in 2013 and aged 18 through 39 years old, were selected from the Netherlands Cancer Registry and linked to employment data from Statistics Netherlands, from which 1252 partners of AYAs could be identified. For both patients and their partners, a control group with same age, migration background, and sex was selected. The impact (i.e., causal effect) was estimated by implementing a doubly robust difference-in-differences method, from 3 years before to 5 years after cancer diagnosis. RESULTS: Patients suffered a reduced employment probability (3.8 percentage points) and number of hours worked when employed (3.8%). This effect was larger for females, and individuals with a migration background, high tumor stage, or diagnosed with a central nervous system tumor/hematologic malignancy. In regard to employment, no significant effect could be found for the patients' partners, although a 5.5 percentage-point increase in employment probability was found in partners who were either unemployed or worked fewer than 400 hours. CONCLUSIONS: A cancer diagnosis significantly affects employment outcomes of AYA patients with cancer. Patients at risk should have access to services such as job counseling to help them return into society in the best possible way. No objective impact on partners' employment outcomes was found; however, subjective well-being was not taken into account. PLAIN LANGUAGE SUMMARY: This study estimated the causal effect of a cancer diagnosis on employment outcomes. Adolescent and young adult cancer survivors face a reduction in both employment probability and the number of hours worked when employed. Partners that were unemployed or worked the least number of hours a year before diagnosis had a 5.5 percentage-point increased employment probability, but for other partners effects are small.
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Sobreviventes de Câncer , Emprego , Neoplasias , Humanos , Feminino , Masculino , Sobreviventes de Câncer/estatística & dados numéricos , Emprego/estatística & dados numéricos , Países Baixos/epidemiologia , Adolescente , Adulto Jovem , Adulto , Neoplasias/epidemiologia , Sistema de RegistrosRESUMO
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.
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PURPOSE: For adolescent and young adult (AYA) cancer survivors with a good prognosis, having a healthy lifestyle prevents morbidity and mortality after treatment. The aim of this study was to investigate the prevalence of (un)healthy lifestyle behaviors and related determinants in AYA cancer survivors. METHODS: A population-based, cross-sectional study was performed among long-term (5-20 years) AYA cancer survivors (18-39 years old at diagnosis) registered within the Netherlands Cancer Registry. Self-reported questionnaires data about health behaviors were used to calculate the 2018 World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) adherence score. Associations between the score and clinical/sociodemographic determinants of (un)healthy behaviors were investigated using logistic regression models. RESULTS: The mean WCRF/AICR score was low to moderate, 3.8 ± 1.2 (0.5-7.0) (n = 3668). Sixty-one percent adhered to "limit the consumption of sugar sweetened drinks," 28% to "be a healthy weight," 25% to "fruit and vegetable consumption," and 31% to "limit alcohol consumption." Moderate and high adherence were associated with being a woman (ORmoderate = 1.46, 95% CI = 1.14-1.85, and ORhigh = 1.87, 95% CI = 1.46-2.4) and highly educated (ORmoderate = 1.54, 95% CI = 1.30-1.83, and ORhigh = 1.87, 95% CI = 1.46-2.4). Low adherence was associated with smoking (ORmoderate = 0.68, 95% CI = 0.50-0.92, and ORhigh = 0.30, 95% CI = 0.21-0.44) and diagnosis of germ cell tumor (ORmoderate = 0.58, 95% CI = 0.39-0.86, and ORhigh = 0.45, 95% CI = 0.30-0.69). CONCLUSIONS: Adherence to the 2018 WCRF/AICR lifestyle recommendations was low to moderate, especially regarding body weight, fruit, vegetables, and alcohol consumption. Men, current smokers, lower-educated participants, and/or those diagnosed with germ cell tumors were less likely to have a healthy lifestyle. IMPLICATIONS FOR CANCER SURVIVORS: Health-promotion programs (e.g., age-specific tools) are needed, focusing on high-risk groups.
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Background: This study aims to (1) investigate the prevalence of anxiety, depression and severe fear of cancer recurrence or progression in gastrointestinal stromal tumor (GIST) patients treated in a curative or palliative setting, (2) compare their prevalence with a norm population, (3) identify factors associated with anxiety, depression and severe fear, and (4) study the impact of these psychological symptoms on health-related quality of life (HRQoL). Methods: In a cross-sectional study, GIST patients completed the Hospital Anxiety and Depression Scale, Cancer Worry Scale, and EORTC QLQ-C30. Results: Of the 328 patients, 15% reported anxiety, 13% depression, and 43% had severe fear. Anxiety and depression levels were comparable between the norm population and patients in the curative setting, but significantly higher for patients in the palliative setting. Having other psychological symptoms was associated with anxiety, while current TKI treatment and anxiety were associated with depression. Severe fear was associated with age, female sex, palliative treatment setting, anxiety, and GIST-related concerns. Conclusion: GIST patients treated in a palliative setting are more prone to experience psychological symptoms, which can significantly impair their HRQoL. These symptoms deserve more attention in clinical practice, in which regular screening can be helpful, and appropriate interventions should be offered.
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PURPOSE: Adolescent and young adult cancer survivors (AYAs) are at increased risk of long-term and late effects, and experience unmet needs, impacting their health-related quality of life (HRQoL). In order to provide and optimize supportive care and targeted interventions for this unique population, it is important to study HRQoL factors' interconnectedness on a population level. Therefore, this network analysis was performed with the aim to explore the interconnectedness between HRQoL factors, in the analysis described as nodes, among long-term AYAs. METHODS: This population-based cohort study used cross-sectional survey data of long-term AYAs, who were identified by the Netherlands Cancer Registry (NCR). Participants completed a one-time survey (SURVAYA study), including the EORTC survivorship questionnaire (QLQ-SURV111) to assess their long-term HRQoL outcomes and sociodemographic characteristics. The NCR provided the clinical data. Descriptive statistics and a network analysis, including network clustering, were performed. RESULTS: In total, 3596 AYAs (on average 12.4 years post diagnosis) were included in our network analysis. The network was proven stable and reliable and, in total, four clusters were identified, including a worriment, daily functioning, psychological, and sexual cluster. Negative health outlook, part of the worriment cluster, was the node with the highest strength and its partial correlation with health distress was significantly different from all other partial correlations. CONCLUSION: This study shows the results of a stable and reliable network analysis based on HRQoL data of long-term AYAs, and identified nodes, correlations, and clusters that could be intervened on to improve the HRQoL outcomes of AYAs.