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  • 1
    In: Palliative and Supportive Care, Cambridge University Press (CUP), Vol. 20, No. 4 ( 2022-08), p. 462-470
    Abstract: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). Methods A total of 149 AYAs aged 18–39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. Results At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. Significance of results Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.
    Type of Medium: Online Resource
    ISSN: 1478-9515 , 1478-9523
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2022
    detail.hit.zdb_id: 2121158-9
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  • 2
    In: Clinical Journal of Oncology Nursing, Oncology Nursing Society (ONS), Vol. 19, No. 6 ( 2015-12-1), p. 675-681
    Type of Medium: Online Resource
    ISSN: 1092-1095 , 1538-067X
    Language: Unknown
    Publisher: Oncology Nursing Society (ONS)
    Publication Date: 2015
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  • 3
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2012
    In:  Journal of Clinical Oncology Vol. 30, No. 15_suppl ( 2012-05-20), p. 9015-9015
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 30, No. 15_suppl ( 2012-05-20), p. 9015-9015
    Abstract: 9015 Background: Suicide rates in YA cancer patients are higher than in the general population. Although cancer is associated with a four-fold increase in the likelihood of a suicide attempt, little is known about suicidality in YAs with cancer. This study examined rates and clinical risk factors associated with suicidality in a sample of YAs with advanced cancer. Methods: Structured interviews were conducted between 4/2010 and 9/2011 with 70 YA advanced cancer patients (range 20-40 yrs, M=33.97, SD=5.61) receiving care at the Dana-Farber Cancer Institute. Validated measures assessed suicidality (i.e., Yale Evaluation of Suicidality), quality of life, major depressive disorder, grief over cancer-related losses, and social support. Scores on the suicidality measure were dichotomized into positive screen = 1 and negative screen = 0. Chi-square, t-test, and logistic regression analyses evaluated the relationship between suicidality and participant characteristics and psychosocial variables, controlling for confounding variables. Results: Over one-fifth (21.4%) of the sample screened positive for suicidality. Female gender χ 2 (1, N = 70) = 4.95, p = .026), breast compared with other cancer diagnosis χ 2 (1, N = 70) = 5.66, p = .017), and better performance status (t(68) = 3.13, p 〈 .01) were associated with lower rates of suicidality. Participants who met criteria for current (OR [95% CI] 8.67 [1.78, 42.22] ) or lifetime major depressive disorder (5.38 [1.60, 18.12]) endorsed higher rates of suicidality. Better overall (.97 [.94, .99] ), psychological (.93 [.87, .94]), and existential quality of life (.91 [.85, .98] ) were associated with reduced suicidality risk. More severe grief was associated with greater risk (1.15 [1.04, 1.28]) whereas greater social support was associated with lower suicidality risk (.85 [.74, .97] ). Conclusions: YAs with advanced cancer reported higher rates of suicidality than observed in other age groups. Developmentally targeted interventions that promote physical function, effectively treat depression, improve quality of life and reduce grief, and provide opportunities for social support may reduce rates of and risk for suicidality in this population.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2012
    detail.hit.zdb_id: 2005181-5
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  • 4
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2013
    In:  Journal of Clinical Oncology Vol. 31, No. 13 ( 2013-05-01), p. 1683-1689
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 31, No. 13 ( 2013-05-01), p. 1683-1689
    Abstract: Patients who develop a strong alliance with their health care providers have been shown to have higher levels of psychosocial well-being and rates of treatment adherence. Young adults with cancer have lower levels of psychosocial well-being and treatment adherence relative to patients with cancer in other age groups. This study sought to evaluate the relationships between the patient-oncologist alliance, psychosocial well-being, and treatment adherence in young adults with advanced cancer. Patients and Methods Ninety-five young adults (age 20 to 40 years) with advanced cancer were administered measures of alliance, psychosocial well-being, willingness to adhere to treatment, and treatment adherence. Relationships between alliance and psychosocial well-being were examined bivariately. Multiple linear regression models examined the relationship between alliance and adherence, controlling for confounding influences (eg, psychosocial well-being). Results Alliance was significantly (P ≤ .01) and positively associated with greater perceived social support and less severe illness-related grief. After controlling for significant confounding influences (ie, metastases, appraised support, and grief), alliance remained significantly (P ≤ .01) associated with greater willingness to adhere to treatment and greater adherence to oral medication. Conclusion By developing a strong alliance, oncologists may enhance psychosocial well-being and increase treatment adherence in young adult patients with advanced cancer.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2013
    detail.hit.zdb_id: 2005181-5
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  • 5
    In: Pediatric Blood & Cancer, Wiley, Vol. 70, No. 1 ( 2023-01)
    Abstract: Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end‐of‐life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care. Procedure This was a secondary analysis of a qualitative study that aimed to identify priority domains for end‐of‐life care. Content analysis of semi‐structured interviews among AYAs aged 12–39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy. Results Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short‐term and long‐term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care. Conclusions AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2130978-4
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  • 6
    Online Resource
    Online Resource
    Mary Ann Liebert Inc ; 2020
    In:  Journal of Adolescent and Young Adult Oncology Vol. 9, No. 5 ( 2020-10-01), p. 608-612
    In: Journal of Adolescent and Young Adult Oncology, Mary Ann Liebert Inc, Vol. 9, No. 5 ( 2020-10-01), p. 608-612
    Type of Medium: Online Resource
    ISSN: 2156-5333 , 2156-535X
    Language: English
    Publisher: Mary Ann Liebert Inc
    Publication Date: 2020
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  • 7
    In: Journal of Medical Internet Research, JMIR Publications Inc., Vol. 23, No. 6 ( 2021-6-11), p. e25069-
    Abstract: Many young adult patients do not receive adequate psychosocial services to help them cope with cancer. Objective This study aims to assess the feasibility and acceptability of a smartphone app (iaya) intervention that was designed to create an engaged community of young adult patients and help them learn emotional coping skills. Methods For this single-group pilot trial, 25 young adult patients aged 18-39 years who were receiving active cancer treatment were asked to use the iaya app for 12 weeks. To collect app use data, we used Mixpanel, an analytics platform for apps. Feasibility was assessed through rates of app sessions and the number of coping exercises engaged, and intervention acceptability was evaluated by using an app usability questionnaire and through qualitative interviews at study completion. We collected patient-reported outcome data at baseline and at week 12 to explore self-efficacy for coping with cancer, self-efficacy for managing emotions, perceived emotional support, and quality of life. Results Baseline patient-reported outcome data indicated that participants scored relatively low on perceived emotional support but reasonably high on self-efficacy for coping with cancer and managing emotions as well as quality of life. Participants had a mean of 13 app sessions (SD 14) and 2 coping exercises (SD 3.83) in 12 weeks. Only 9% (2/23) of participants met our combined feasibility definition of ≥10 app sessions and ≥3 coping skills from different categories. The participants’ mean usability score was 73.7% (SD 10.84), which exceeded our predefined threshold of ≥70%, and qualitative feedback was generally positive. Conclusions Although perceived acceptable by patients, the iaya smartphone app did not meet the a priori feasibility criteria as a stand-alone app intervention. Future studies should screen participants for unmet coping needs and consider integrating the app as part of psychosocial care for young adult patients.
    Type of Medium: Online Resource
    ISSN: 1438-8871
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2028830-X
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  • 8
    Online Resource
    Online Resource
    Mary Ann Liebert Inc ; 2011
    In:  Journal of Adolescent and Young Adult Oncology Vol. 1, No. 4 ( 2011-12), p. 168-172
    In: Journal of Adolescent and Young Adult Oncology, Mary Ann Liebert Inc, Vol. 1, No. 4 ( 2011-12), p. 168-172
    Type of Medium: Online Resource
    ISSN: 2156-5333 , 2156-535X
    Language: English
    Publisher: Mary Ann Liebert Inc
    Publication Date: 2011
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  • 9
    Online Resource
    Online Resource
    Elsevier BV ; 2011
    In:  Journal of Pain and Symptom Management Vol. 41, No. 1 ( 2011-01), p. 246-247
    In: Journal of Pain and Symptom Management, Elsevier BV, Vol. 41, No. 1 ( 2011-01), p. 246-247
    Type of Medium: Online Resource
    ISSN: 0885-3924
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2011
    detail.hit.zdb_id: 1500639-6
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  • 10
    Online Resource
    Online Resource
    American Academy of Pediatrics (AAP) ; 2019
    In:  Pediatrics Vol. 143, No. 5 ( 2019-05-01)
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 143, No. 5 ( 2019-05-01)
    Abstract: Adolescents and young adults (AYAs) with cancer generally want to engage in decision-making but are not always able to do so. We evaluated cancer treatment decision-making among AYAs, including decisional engagement and regret. METHODS: We surveyed 203 AYA patients with cancer aged 15 to 29 (response rate 74%) treated at a large academic center and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report decision-making preferences and experiences (Decisional Roles Scale) and the extent to which they regretted their initial treatment decision (Decisional Regret Scale) assessed at baseline and 4 and 12 months later. RESULTS: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents. Although most AYAs held roles they preferred, those who did not reported holding more passive roles relative to oncologists (P & lt; .0001) and parents (P = .002) than they desired. Nearly one-quarter of patients (24%; 47 of 195) experienced regret about initial cancer treatment decisions at baseline, with similar rates at 4 (23%) and 12 (19%) months. In a multivariable model adjusted for age, decisional roles were not associated with regret; instead, regret was less likely among patients who trusted oncologists completely (odds ratio 0.17 [95% confidence interval 0.06–0.46]; P & lt; .001) and who reported that oncologists understood what was important to them when treatment started (odds ratio 0.13 [95% confidence interval 0.04–0.42]; P & lt; .001). CONCLUSIONS: Nearly one-fourth of AYA patients expressed regret about initial treatment decisions. Although some AYAs have unmet needs for decisional engagement, attributes of the patient-oncologist relationship, including trust and mutual understanding, may be most protective against regret.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2019
    detail.hit.zdb_id: 1477004-0
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