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1.
Eur J Pediatr ; 182(10): 4683-4706, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37561196

RESUMEN

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.


Asunto(s)
Neoplasias , Intervención Psicosocial , Humanos , Niño , Ensayos Clínicos Controlados Aleatorios como Asunto , Padres/psicología , Neoplasias/terapia , Investigadores
2.
Support Care Cancer ; 27(12): 4461-4467, 2019 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30903368

RESUMEN

PURPOSE: This study aimed to assess whether prostate cancer survivors who received a behavioral intervention to urinary incontinence had experienced a significant mood improvement. METHODS: One hundred fifty-three prostate cancer survivors with persistent incontinence were included in this secondary data analysis. They were randomly assigned to usual care or interventions that provided pelvic floor muscle exercises and self-management skills. All subjects had measures of anxiety, depression, and anger at baseline, 3 months (post-intervention), and 6 months (follow-up). Negative binomial regression analysis was performed to examine the group status, daily leakage frequency at 3 months, and their interactions at 3 months as predictors for mood outcomes at 6 months, controlling for demographic and medical variables. RESULTS: The main effect of daily leakage frequency at 3 months significantly predicted anxiety at 6 months (p < .01). The group main effect on any mood outcomes at 6 months was not statistically significant. The interaction between the group and 3-month leakage had a significant effect on anxiety; intervention subjects achieving a significant leakage reduction at 3 months exhibited significantly less anxiety at 6 months than other subjects (p = .04). Age, employment status, and receiving surgery at baseline were significantly associated with less anxiety, depression, and anger at 6 months. CONCLUSIONS: Reduced urinary incontinence significantly predicted less anxiety, especially among the intervention subjects. The findings suggest a significant association between a behavioral therapy of urinary incontinence and anxiety reduction in prostate cancer survivors.


Asunto(s)
Afecto , Terapia Conductista/métodos , Supervivientes de Cáncer/psicología , Neoplasias de la Próstata/rehabilitación , Incontinencia Urinaria/psicología , Incontinencia Urinaria/terapia , Anciano , Terapia por Ejercicio/métodos , Humanos , Masculino , Persona de Mediana Edad , Neoplasias de la Próstata/fisiopatología , Neoplasias de la Próstata/psicología , Resultado del Tratamiento
3.
Cancer Med ; 13(15): e70017, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39101481

RESUMEN

OBJECTIVE: High self-efficacy is associated with improved self-care and reduced symptoms in cancer patients but has not been fully interrogated in adults with central nervous system (CNS) cancers. We aimed to identify the relationship between self-efficacy levels in managing emotions (SEMEM) and social interactions (SEMSI) by examining sample characteristics and symptom burden. METHODS: Sample characteristics and patient-reported outcome (PRO) measures addressing self-efficacy (PROMIS SEMEM & SEMSI) and symptom burden (MDASI BT or SP) were collected in a novel web-based study of 158 adult patients diagnosed with rare CNS tumors. RESULTS: The sample was predominantly female (73%), diagnosed with an ependymoma (66%), and had a median age of 45 (19-75). Low SEMEM was associated with a longer duration of symptoms before surgery (r = -0.26) and female gender (92%) among brain tumor (BT) participants and in spinal cord tumors (SCT), those with lower education (r = 0.29). Reporting low SEMSI was associated with being married (42%), lower education (r = 0.22), and a prolonged time with symptoms before surgery (r = 0.29) in those with BTs, with no associations identified in SCT. More severe mood-related interference (including mood, enjoyment of life, and relationship with others) was associated with lower SEMEM among both locations (r = -0.61 brain, r = -0.28 spine) and SEMSI in BT participants (r = -0.54). CONCLUSIONS: Low self-efficacy was linked to a prolonged time between symptom onset and initial surgery, education, gender, and marital status and was associated with higher mood-related interference. Understanding characteristics associated with low self-efficacy underscores a need for future studies to tailor interventions that enhance self-efficacy.


Asunto(s)
Neoplasias del Sistema Nervioso Central , Autoeficacia , Humanos , Femenino , Masculino , Adulto , Persona de Mediana Edad , Anciano , Neoplasias del Sistema Nervioso Central/psicología , Neoplasias del Sistema Nervioso Central/terapia , Adulto Joven , Medición de Resultados Informados por el Paciente , Internet
4.
Cancer Med ; 13(14): e70010, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-39001678

RESUMEN

PURPOSE: High-quality communication is essential to patient-centered care. Existing communication models and research tends to focus on what is said verbally with little attention to nonverbal aspects of communication. In sensitive and emotionally intensive healthcare encounters, such as in cancer care, provider and patient nonverbal behavior may be particularly important for communicating with empathy. Therefore, the aim of this study was to develop a conceptual model of communication that accounts for nonverbal behavior. METHODS: We followed a systematic grounded theory design that involved semi-structured interviews with 23 providers, including nurse practitioners, physicians, surgeons, and physician's assistants. Using constant comparative analysis, we analyzed transcripts and developed a grounded theory model of communication accounting for nonverbal behavior. RESULTS: The major themes included building rapport, gauging how patients will take bad news, ensuring patients' understanding of their conditions, staying honest but hopeful, centering but guiding patient through cancer care, conveying empathy while managing heightened emotions, and ensuring patient understanding. Throughout the process, providers synthesize both verbal and nonverbal information and apply what they learn to future encounters. CONCLUSIONS: The results extend existing models of patient-centered communication and invite communication intervention and research that incorporates nonverbal behavior. The model contributes an understanding of the full process of communication in clinical encounters.


Asunto(s)
Empatía , Teoría Fundamentada , Neoplasias , Comunicación no Verbal , Atención Dirigida al Paciente , Relaciones Médico-Paciente , Humanos , Neoplasias/psicología , Neoplasias/terapia , Femenino , Masculino , Comunicación , Persona de Mediana Edad , Adulto
5.
J Interpers Violence ; 39(17-18): 3829-3854, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39119651

RESUMEN

While far-right movements are commonly associated with masculinity and women are in the minority, it is notable that they often play significant roles within these movements. To deepen our understanding of the motivations behind women's participation, this study challenges Blee's argument that women's motivations for participating are shaped by their interactions with other members. By using the psychosocial method devised by Hollway and Jefferson and developed by Gadd, the present study argues that women's pre-participation experiences can play a vital part in drawing them to the movements. Through analyzing the life stories of six far-right women in Japan and conducting an in-depth case study of three of them, the study aims to uncover a wide range of experiences that may initially appear unrelated to far-right ideology but ultimately led these subjects to become involved in far-right movements. It highlights the importance of paying attention to their complex subjectivities, which are formed by the interplay between their unique trajectories and societal transitions concerning gender norms, particularly within the era of neoliberal "emancipation." The study finds that the duality of far-right movements, which combine conservatism with deviance, enables some women to express paradoxical desires that they experience in response to living through a transitional era.


Asunto(s)
Odio , Humanos , Femenino , Japón , Adulto , Política , Masculinidad
6.
Cancer Med ; 13(3): e6821, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38204153

RESUMEN

BACKGROUND: To investigate the educational outcomes of siblings of childhood leukemia survivors, explore determinants of school difficulties, and compare the rates of repeating grades between siblings and the general population. METHODS: A cross-sectional study of childhood leukemia survivors' siblings recruited through the Leucémies de l'Enfant et de l'Adolescent cohort, a French long-term follow-up program, was conducted, and education-related data were obtained via self-report questionnaires. Adjusted logistic regression models were used to identify variables associated with school difficulties and time since diagnosis. Rates of repeating a grade in middle school were compared between siblings and the general population of the same generation. RESULTS: A total of 564 siblings with a mean time from diagnosis of 14.1 ± 6.4 years were included, among whom 139 (24.6%) repeated a grade, at an average of 6.4 ± 4.5 years after diagnosis. In multivariate analysis, the risk factors for repeating a grade were older siblings (odds ratio [OR] 2.3, p = 0.006), family financial difficulties (OR 2.8, p = 0.008), and history of repetition in survivors (OR, 2.5, p = 0.001). Sibling hematopoietic stem cell donors were at greater risk of repeating a grade long-term after diagnosis (p = 0.018). Overall, siblings did not have a higher risk of educational delays at the end of middle school than the general population. CONCLUSION: Although the results are reassuring, socioeconomic and cancer-related factors may have an impact on siblings' schooling long after diagnosis. Paying attention to siblings contributes to identifying the most vulnerable families, allowing more attention and appropriate resources to avoid long-term repercussions. Additionally, supportive and targeted interventions can be developed to improve the organization of education and the health care system.


Asunto(s)
Leucemia , Hermanos , Adolescente , Humanos , Estudios Transversales , Escolaridad , Instituciones Académicas
7.
Cancer Med ; 12(5): 6307-6317, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36404625

RESUMEN

BACKGROUND: Factors that influence prostate cancer treatment decisions are complex, multifaceted, and personal, and may vary by race/ethnicity. Although research has been published to quantify factors involved in decision-making, these studies have been limited to primarily white, and to a lesser extent, Black patients, and quantitative studies are limited for discerning the cultural and contextual processes that shape decision-making. METHODS: We conducted 43 semi-structured interviews with a racially and ethnically diverse sample of patients diagnosed with low- and very-low risk prostate cancer who had undergone treatment for their prostate cancer. Interviews were transcribed, independently coded, and analyzed to identify themes salient for decision-making, with attention to sociocultural differences. RESULTS: We found racial and ethnic differences in three areas. First, we found differences in how socialized masculinity influenced patient's feelings about different treatment options. Second, we found that for some men, religion and spirituality alleviated anxiety associated with the active surveillance protocol. Finally, for racially and ethnically minoritized patients, we found descriptions of how historic and social experiences within the healthcare system influenced decision-making. CONCLUSIONS: Our study adds to the current literature by expounding on racial and ethnic differences in the multidimensional, nuanced factors related to decision-making. Our findings suggest that factors associated with prostate cancer decision-making can manifest differently across racial and ethnic groups, and provide some guidance for future research.


Asunto(s)
Etnicidad , Neoplasias de la Próstata , Cuidado Terminal , Humanos , Masculino , Toma de Decisiones , Neoplasias de la Próstata/terapia , Investigación Cualitativa
8.
Cancer Med ; 12(2): 1821-1828, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35754357

RESUMEN

BACKGROUND: Coronavirus disease 2019 (COVID-19) has spread to all countries since December 2019, triggering a pandemic within weeks of the initial outbreak. Doctors were presented with the challenge of having to reimagine the traditional hospital organisation in order to effectively manage patients. PATIENTS AND METHODS: During the months of the COVID-19 pandemic our Institution was assisted by a call-center (CC) that triaged cancer patients planned for follow-up in our outpatient clinics: C1 (for female cancers), C2 (for gastrointestinal, urogenital, and thoracic tumours), and D1 (for melanoma and for patients with tumours in over 5 years follow up). Data refers to the period between 15 April and 3 July 2020. RESULTS: A total of 1054 patients have been included in our study and 1005 (95%) of the contacts were successful. The analysis showed a majority of female patients (74%) and patients affected by breast cancer (56%). Among the options provided 646 patients (92.4%) opted for online consultancy. CONCLUSION: This study has shown that cancer patients valued technology-mediated follow-up visits mainly during the beginning of the pandemic because patients themselves were afraid to come to the hospital. Although telemedicine has intrinsic limitations, it is important for providing assistance and preventing cancer patients from feeling isolated during an emergency.


Asunto(s)
Neoplasias de la Mama , COVID-19 , Telemedicina , Humanos , Femenino , COVID-19/epidemiología , COVID-19/prevención & control , Pandemias/prevención & control , SARS-CoV-2 , Continuidad de la Atención al Paciente
9.
Cancer Med ; 12(8): 9956-9965, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36934452

RESUMEN

BACKGROUND: Cancer can impact the psychological well-being of both patients and their informal caregivers. We investigated the joint trajectories of psychological distress among Singaporean advanced cancer patients-caregiver dyads. We also examined predictors of trajectory group membership. METHODS: This study utilised data from 299 patients with advanced solid cancer and their caregivers over 33 months (12 times points). Group-based trajectory modelling was used to examine the joint trajectories of patient anxiety, patient depression, caregiver anxiety and caregiver depression scores using the Hospital Anxiety and Depression Scale. RESULTS: Four joint trajectory groups were found: (1) Patient-caregiver low distress (27%), (2) patient-caregiver increasing distress (28.5%), (3) patient low- caregiver borderline distress (25%), (4) patient-caregiver high distress (19.5%). Dyads where the patient is below 50 years of age were more likely to be in Group 4. Dyads where caregiver-patient emotional closeness was low were more likely to be in Groups 2 or 4 where dyads reported increasing/high distress. Dyads that reported financial inadequacy were more likely to be in Groups 2, 3 and 4, while dyads with caregivers who were employed were more likely to be in group 3. CONCLUSIONS: A substantial proportion of patients and caregivers reported anxiety and/or depression that lasted or increased throughout the study duration. We found significant heterogeneity in how dyads experienced psychological distress, suggesting that efforts should consider dyadic differences when providing psychological support. Particular focus should be placed on identifying dyads that are at risk and who require additional support.


Asunto(s)
Neoplasias , Distrés Psicológico , Humanos , Cuidadores/psicología , Estudios Prospectivos , Depresión/epidemiología , Depresión/etiología , Depresión/psicología , Neoplasias/terapia , Neoplasias/psicología , Ansiedad/epidemiología , Ansiedad/etiología , Ansiedad/psicología , Calidad de Vida/psicología , Estrés Psicológico/etiología , Estrés Psicológico/psicología
10.
Cancer Med ; 12(8): 9966-9975, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36846975

RESUMEN

BACKGROUND: In high-income countries, hope facilitates parental coping and builds the clinical relationship between families of children with cancer and their clinicians. However, the manifestation of hope in low- and middle-income countries (LMICs) remains poorly understood. Our study explores Guatemalan parents' experiences with hope during the pediatric oncology diagnostic process and aims to identify discrete actions clinicians take to support hope. METHODS: This qualitative study utilized audio-recordings of the diagnostic process and an additional semi-structured interview for 20 families of children with cancer at Unidad Nacional de Oncología Pediátrica in Guatemala. Spanish audio-recordings were translated into English, transcribed, and coded using a priori and novel codes. Thematic content analysis using constant comparative methods explored parents' hopes and concerns. RESULTS: At diagnosis, Guatemalan parents expressed both hopes and concerns related to the entire cancer continuum. Throughout the diagnostic process, hope grew as concerns were alleviated. Clinicians supported hope by creating a supportive environment, providing information, affirming religious beliefs, and empowering parents. These strategies helped parents shift their focus from fear and uncertainty toward hope for their child's future. Parents expressed that establishing hope improved mood, promoted acceptance, and enabled them to care for themselves and their children. CONCLUSION: These results confirm the relevance of supporting hope in pediatric oncology settings in LMICs and suggest that culture informs hope-related needs. Supporting hope is critical across cultures and can be integrated into clinical conversation using the four processes identified by our results.


Asunto(s)
Neoplasias , Padres , Humanos , Niño , Neoplasias/diagnóstico , Neoplasias/terapia , Oncología Médica , Comunicación , Miedo
11.
Cancer Med ; 12(18): 19203-19214, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37732470

RESUMEN

BACKGROUND: Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)-affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. METHODS: We conducted 14 semi-structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. RESULTS: Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis-heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. CONCLUSIONS: SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.

12.
Cancer Med ; 12(16): 17356-17364, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37485648

RESUMEN

BACKGROUND: Transportation has been identified as a specific source of burden for cancer caregivers. This study examined cancer caregivers' subjective experiences and objectives costs associated with transportation over a 6-month period of providing end-of-life care to a family member or friend. METHODS: This was a multi-site longitudinal, prospective cohort study that followed 223 caregiver-patient dyads. Data were collected using biweekly, semi-structured interviews for up to 6 months and collection of all caregiving related receipts. Interviews were coded and analyzed using a comparative, iterative analysis and actual out of pockets costs were described using descriptive statistics. RESULTS: Over the 6-month study period most caregivers (n = 143; 74%) discussed transportation at one or more timepoints. Average biweekly transportations costs to caregivers were $43.6. Caregivers described (n = 56; 39%) multiple direct and indirect costs of transportation, and 58% (n = 84) discussed the need for transportations services or assistance at the institutional level. CONCLUSIONS: Caregivers described the multifaceted costs of transportation they experienced which are in line with previous work. Alongside descriptions of direct costs, caregivers described key opportunity costs, such as personal and work time forgone to transporting patients. Caregivers also made suggestions for institutional and/or civic based solutions to facilitate reliable modes of transportation, rather than individual-level intervention.


Asunto(s)
Cuidadores , Neoplasias , Humanos , Estudios Prospectivos , Costos y Análisis de Costo , Familia , Neoplasias/terapia
13.
Cancer Med ; 12(11): 12813-12826, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37081718

RESUMEN

BACKGROUND: The COVID-19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID-19 pandemic on children with cancer and their families. METHODS: This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In-depth analysis focused on the impact of the COVID-19 pandemic on children with cancer and their families. RESULTS: Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID-19 Policies, Cancer Treatment Modifications, COVID-19 Symptoms, Beliefs), patient-related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient-related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families. CONCLUSIONS: Communication served as the central factor impacting whether the COVID-19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient-centered care and can guide future development of communication-centered interventions globally.


Asunto(s)
COVID-19 , Neoplasias , Humanos , Niño , Pandemias , COVID-19/epidemiología , Neoplasias/epidemiología , Neoplasias/terapia , Comunicación , Lenguaje
14.
Cancer Med ; 12(16): 17273-17283, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37401398

RESUMEN

OBJECTIVE: This study sought to investigate interactive participation and content of a moderated discussion forum within a web-based psychoeducational intervention aimed at alleviating sexual dysfunction and fertility distress in young adults diagnosed with cancer. METHODS: The study is part of the Fex-Can Young Adult randomized controlled trial (RCT), in which young adults with self-reported sexual dysfunction or fertility distress were invited to participate. This study focuses on RCT participants that were randomized into the intervention condition. Sociodemographics and clinical characteristics of intervention participants and level of activity in the intervention were analyzed with descriptive statistics and compared between subgroups ("high" and "low" activity participants). Inductive qualitative thematic analysis was used to analyze the posts in the discussion forum. RESULTS: Of 135 intervention participants, 24% met the criteria for high activity participation. There were no statistically significant differences found in terms of clinical and sociodemographic characteristics between high and low activity participants. Ninety-one participants (67%) accessed the discussion forum, and 19 (14%) posted at least once. Posters shared intimate details of their experiences of sexuality and fertility following cancer. The thematic analysis of posts resulted in four themes: fertility fears, perceptions of the changed body, missing out on life, and importance of support and information. CONCLUSIONS: While a smaller proportion of participants posted in the discussion forum, a majority spent time reading posts (lurkers). Participants posting in the forum shared experiences of intimate relationships, body image, parenthood concerns, and support needs. The discussion forum was used by a majority of intervention participants, and provided appreciated support for those who posted in the forum. We therefore recommend similar interventions to include this opportunity for interaction and communication.


Asunto(s)
Neoplasias , Conducta Sexual , Humanos , Adulto Joven , Fertilidad , Neoplasias/complicaciones , Neoplasias/terapia , Internet
15.
Cancer Med ; 11(12): 2455-2466, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35266321

RESUMEN

OBJECTIVES: Patients face a myriad of personal and system-based challenges in accessing breast cancer care, but less is known about access as expressed and experienced by patients themselves. The objective of this qualitative study was to further explore the breadth of issues related to access from the perspective of patients with breast cancer across their care journey. METHODS: Twelve women participated in 1-h semi-structured interviews and 48 women participated in 2-h focus groups at six oncology practices in 2018. Grounded theory was used to analyze the data. RESULTS: Six primary themes emerged concerning access to care: information, psychosocial support, health insurance, financial resources, timeliness, and emotions. CONCLUSIONS: This study identified six core dimensions of access to care. Access encompassed not only gaining entrée to care services-in the traditional sense of access-but also the continuing support needed to effectively use those services throughout the cancer care journey. Future strategies aimed at improving access to breast cancer care should attend to these ongoing patient-centric and system-based issues which are mostly amenable to change.


Asunto(s)
Neoplasias de la Mama , Neoplasias de la Mama/terapia , Femenino , Accesibilidad a los Servicios de Salud , Humanos , Investigación Cualitativa
16.
Cancer Med ; 11(15): 2999-3008, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35322925

RESUMEN

OBJECTIVE: Patient-centered care and shared decision making (SDM) are generally recognized as the gold standard for medical consultations, especially for preference-sensitive decisions. However, little is known about psychological patient characteristics that influence patient-reported preferences. We set out to explore the role of personality and anxiety for a preference-sensitive decision in bladder cancer patients (choice of urinary diversion, UD) and to determine if anxiety predicts patients' participation preferences. METHODS: We recruited a sample of bladder cancer patients (N = 180, primarily male, retired) who awaited a medical consultation on radical cystectomy and their choice of UD. We asked patients to fill in a set of self-report questionnaires before this consultation, including measures of treatment preference, personality (BFI-10), anxiety (STAI), and participation preference (API and API-Uro), as well as sociodemographic characteristics. RESULTS: Most patients (79%) indicated a clear preference for one of the treatment options (44% continent UD, 34% incontinent UD). Patients who reported more conscientiousness were more likely to prefer more complex methods (continent UD). The majority (62%) preferred to delegate decision making to healthcare professionals. A substantial number of patients reported elevated anxiety (32%), and more anxiety was predictive of higher participation preference, specifically for uro-oncological decisions (ß = 0.207, p < 0.01). CONCLUSIONS: Our findings provide insight into the role of psychological patient characteristics for SDM. Aspects of personality such as conscientiousness influence treatment preferences. Anxiety contributes to patients' motivation to be involved in pertinent decisions. Thus, personality and negative affect should be considered to improve SDM.


Asunto(s)
Toma de Decisiones Conjunta , Neoplasias de la Vejiga Urinaria , Ansiedad/etiología , Toma de Decisiones , Humanos , Masculino , Personalidad , Relaciones Médico-Paciente , Neoplasias de la Vejiga Urinaria/terapia
17.
Cancer Med ; 11(17): 3352-3363, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35315588

RESUMEN

PURPOSE: Several studies have reported sleep disturbances during the COVID-19 virus pandemic. Little data exist about the impact of the pandemic on sleep and mental health among older women with breast cancer. We sought to examine whether women with and without breast cancer who experienced new sleep problems during the pandemic had worsening depression and anxiety. METHODS: Breast cancer survivors aged ≥60 years with a history of nonmetastatic breast cancer (n = 242) and frequency-matched noncancer controls (n = 158) active in a longitudinal cohort study completed a COVID-19 virus pandemic survey from May to September 2020 (response rate 83%). Incident sleep disturbance was measured using the restless sleep item from the Center for Epidemiological Studies-Depression Scale (CES-D). CES-D score (minus the sleep item) captured depressive symptoms; the State-Anxiety subscale of the State Trait Anxiety Inventory measured anxiety symptoms. Multivariable linear regression models examined how the development of sleep disturbance affected changes in depressive or anxiety symptoms from the most recent prepandemic survey to the pandemic survey, controlling for covariates. RESULTS: The prevalence of sleep disturbance during the pandemic was 22.3%, with incident sleep disturbance in 10% and 13.5% of survivors and controls, respectively. Depressive and anxiety symptoms significantly increased during the pandemic among women with incident sleep disturbance (vs. no disturbance) (ß = 8.16, p < 0.01 and ß = 6.14, p < 0.01, respectively), but there were no survivor-control differences in the effect. CONCLUSION: Development of sleep disturbances during the COVID-19 virus pandemic may negatively affect older women's mental health, but breast cancer survivors diagnosed with the nonmetastatic disease had similar experiences as women without cancer.


Asunto(s)
Neoplasias de la Mama , COVID-19 , Trastornos del Sueño-Vigilia , Anciano , Ansiedad/epidemiología , Ansiedad/psicología , Neoplasias de la Mama/complicaciones , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/psicología , COVID-19/complicaciones , COVID-19/epidemiología , Depresión/epidemiología , Depresión/etiología , Depresión/psicología , Femenino , Humanos , Estudios Longitudinales , Pandemias , SARS-CoV-2 , Sueño , Trastornos del Sueño-Vigilia/epidemiología
18.
Cancer Med ; 11(18): 3387-3396, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35315594

RESUMEN

OBJECTIVE: We aimed to investigate whether (1) psychological and social indicators influence survival in patients diagnosed with cancer or haematologic malignancies when important biological aspects are controlled for, (2) psychological, social and biological indicators can be utilised to design one collated index for survival, usable in clinical practice to identify patients at risk of shorter survival and to improve personalised healthcare provision. METHODS: In this cross-sectional study, 2263 patients with cancer or haematologic malignancies participated. We analysed 15 biological, psychological and social indicators as risk factors for survival with a Cox proportional hazards model. Indicators significantly associated with survival were combined to compute models for the identification of patient groups with different risks of death. The training sample contained 1122 patients. Validation samples included the remaining 1141 patients, the total sample, as well as groups with different cancer entities. RESULTS: Five indicators were found to significantly impact survival: Cancer site (HR: 3.56), metastatic disease (HR: 1.88), symptoms of depression (HR: 1.34), female sex (HR: 0.73) and anaemia (HR: 0.48). Combining these indicators to a model, we developed the Cancer Survival Index, identifying three distinct groups of patients with estimated survival times of 47.2 months, 141 months and 198.2 months (p < 0.001). Post hoc analysis of the influence of depression on survival showed a mediating effect of the following four factors, related to both depression and survival: previous psychiatric conditions, employment status, metastatic disease and haemoglobin levels. CONCLUSIONS: Psychosocial and biological factors impact survival in various malignancies and can be utilised jointly to compute an index for estimating the survival of each patient individually-the Cancer Survival Index.


Asunto(s)
Factores Biológicos , Neoplasias Hematológicas , Estudios Transversales , Femenino , Hemoglobinas , Humanos , Pronóstico , Modelos de Riesgos Proporcionales , Estudios Retrospectivos
19.
Cancer Rep (Hoboken) ; 5(5): e1506, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-34405968

RESUMEN

BACKGROUND: The coronavirus disease 2019 (COVID-19) crisis and consequent changes in medical practice have engendered feelings of distress in diverse populations, potentially adversely affecting the psychological well-being of cancer patients. AIM: The purpose of this observational longitudinal study was to evaluate psychosocial perspectives among patients with cancer on intravenous treatment during the COVID-19 pandemic. METHODS AND RESULTS: The study recruited 164 cancer patients undergoing intravenous anti-neoplastic therapy in a tertiary cancer center. Psychosocial indices were assessed at two points in time, corresponding with the beginning of the first wave of COVID-19 pandemic in Israel (March 2020) and the time of easing of restrictions implemented to curtail spread of infection (May 2020). At Time 1 (T1), elevated COVID-19 distress levels (score 1 and 2 on 5-point scale) were observed in 44% of patients, and associated with pre-existing hypertension and lung disease in multivariate analyses but no demographic or cancer related factors. At Time 2 (T2), 10% had elevated anxiety and 24% depression as indicated by Hospital Anxiety and Depression Scale (HADS-A/D). COVID-19 distress at T1 was related to higher levels of HADS-A at T2 (Spearman 0.33 p < .01), but not HADS-D. Patients with breast cancer expressed greater COVID-19 distress compared with other cancer types (p < .01), while both HADS-A and HADS-D were highest for patients with GI cancer. Patient report of loneliness and decreased support from relatives were factors associated with HADS-A (p = .03 and p < .01, respectively), while HADS-D was not similarly related to the factors evaluated. CONCLUSION: Patients with cancer undergoing intravenous treatment may be vulnerable to acute adverse psychological ramifications of COVID-19, specifically exhibiting high levels of anxiety. These appear unrelated to patient age or disease stage. Those with underlying comorbidities, breast cancer or reduced social support may be at higher risk.


Asunto(s)
Neoplasias de la Mama , COVID-19 , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/terapia , COVID-19/epidemiología , Depresión/epidemiología , Depresión/etiología , Depresión/psicología , Femenino , Humanos , Estudios Longitudinales , Pandemias , SARS-CoV-2
20.
Cancer Med ; 11(7): 1688-1700, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35150052

RESUMEN

OBJECTIVE: The incidence of young-onset (<50 years) colorectal cancer (CRC) has been increasing internationally. The psychosocial experience of younger cancer patients is vastly different from older patients, especially in domains such as financial toxicity, body image, and sexual dysfunction. What is unknown is the cancer type-specific experience. The aim of the current scoping review was to examine (1) the psychosocial factors and/or outcomes associated with young-onset CRC and (2) other determinants that influences these outcomes. METHODS: A systematic search was conducted on four databases (PubMed, CINAHL, Scopus and PsycINFO) from inception to December 2020 using key terms and combinations. Primary literature that examined the psychosocial (e.g., quality-of-life, emotional, social, sexual) impact of young-onset CRC were included. RESULTS: A total of 1389 records were assessed by four reviewers, with a total of seven studies meeting inclusion criteria (n = 5 quantitative, n = 1 qualitative and n = 1 case series). All studies indicated there was significant psychosocial impact in younger CRC patients, including emotional impact, social impact, physical burden, sexual impact, work impact, unmet needs, financial impact and global quality of life. Three studies explored other determinants that influenced the psychosocial experience and found that socioeconomic background (e.g., being female, lower education), CRC treatment (e.g., chemotherapy) and health status were associated with worse psychosocial impact. CONCLUSIONS: Young-onset CRC patients face severe psychosocial impact unique to this age group, such as self-image and sexual impact. Social support services and resources needs to be uniquely tailored. More empirical investigations are required to understand its long-term impact and influence of other psychosocial domains.


Asunto(s)
Neoplasias Colorrectales , Calidad de Vida , Imagen Corporal/psicología , Neoplasias Colorrectales/epidemiología , Neoplasias Colorrectales/psicología , Neoplasias Colorrectales/terapia , Femenino , Humanos , Calidad de Vida/psicología , Conducta Sexual , Apoyo Social
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