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1.
Cancer ; 2024 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-39031841

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT) are at high risk of poor psychosocial health. This study aimed to determine whether the Promoting Resilience in Stress Management (PRISM) intervention mitigated these risks during the first 6 months posttransplant. METHODS: This multisite, parallel, randomized trial was conducted from April 2019 to March 2023. Eligible AYAs were aged 12-24 years, English speaking, and within 1 month of HCT for cancer or cancer predisposition syndrome. They were assigned 1:1 to PRISM (a brief, skills-based intervention targeting "resilience resources" [stress management, goal setting, cognitive reframing, and meaning making]) or usual care (UC). Outcomes included total symptoms of depression and anxiety (Hospital Anxiety and Depression Scale; primary outcome), hope (Snyder Hope Scale), resilience (10-item Connor-Davidson Resilience Scale), and health-related quality of life (HRQOL; Pediatric Quality of Life Inventory Cancer Module). Analyses leveraged multivariable linear regressions; exploratory analyses assessed the influence of baseline depression or anxiety. RESULTS: Of 94 enrolled and randomized AYAs, the mean age was 16.7 years (SD, 4.2); 43 (46%) were female, 56 (60%) were non-Hispanic White, 22 (23%) were Hispanic, and nine (10%) were Black. Most (77%) had leukemia. Of n = 50 randomized to PRISM and n = 44 to UC, 37 (74%) and 33 (73%) completed all study procedures, respectively. In intention-to-treat analyses, PRISM did not affect 6-month depression and anxiety (ß = -1.1; 95% CI, -3.7 to 1.5), hope (ß = 0.83; 95% CI, -3.3 to 4.9), resilience (ß = -0.01; 95% CI, -3.0 to 3.0), or HRQOL (ß = 1.5; 95% CI, -4.7 to 7.9). Among AYAs with preexisting anxiety or depression, PRISM recipients reported greater 6-month improvements in hope (score change, +3.71; SD, 6.9) versus UC recipients (score change, -2.76; SD, 6.5) (p = .04). CONCLUSIONS: Resilience coaching did not influence outcomes in this sample. Exploratory findings suggest it may be more effective when directed toward those with concurrent distress.

2.
BMC Palliat Care ; 22(1): 60, 2023 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-37189149

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at high risk of poor psychosocial outcomes, and evidence-based interventions designed to meet their psychosocial and communication needs are lacking. The main objective of this project is to test the efficacy of a new adaptation of the Promoting Resilience in Stress Management intervention for AYAs with Advanced Cancer (PRISM-AC). METHODS/DESIGN: The PRISM-AC trial is a 2-arm, parallel, non-blinded, multisite, randomized controlled trial. 144 participants with advanced cancer will be enrolled and randomized to either usual, non-directive, supportive care without PRISM-AC ("control" arm) or with PRISM-AC ("experimental" arm). PRISM is a manualized, skills-based training program comprised of four 30-60 min, one-on-one sessions targeting AYA-endorsed resilience resources (stress-management, goal-setting, cognitive-reframing, and meaning-making). It also includes a facilitated family meeting and a fully equipped smartphone app. The current adaptation includes an embedded advance care planning module. English- or Spanish-speaking individuals 12-24 years old with advanced cancer (defined as progressive, recurrent, or refractory disease, or any diagnosis associated with < 50% survival) receiving care at 4 academic medical centers are eligible. Patients' caregivers are also eligible to participate in this study if they are able to speak and read English or Spanish, and are cognitively and physically able to participate. Participants in all groups complete surveys querying patient-reported outcomes at the time of enrollment and 3-, 6-, 9-, and 12-months post-enrollment. The primary outcome of interest is patient-reported health-related quality of life (HRQOL) and secondary outcomes of interest include patient anxiety, depression, resilience, hope and symptom burden, parent/caregiver anxiety, depression and health-related quality of life, and family palliative care activation. We will conduct intention-to-treat analysis to compare the group means of primary and secondary outcomes between PRISM-AC arm and control arm with regression models. DISCUSSION: This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience and reduce distress among AYAs with advanced cancer. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03668223, September 12, 2018.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Adolescente , Adulto Jovem , Criança , Adulto , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Estresse Psicológico/psicologia , Psicoterapia , Neoplasias/terapia , Neoplasias/psicologia , Inquéritos e Questionários , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Cleft Palate Craniofac J ; : 10556656231157449, 2023 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-36802967

RESUMO

OBJECTIVES: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation. DESIGN: In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview. PARTICIPANTS: Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition. INTERVENTION: PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1-2 weeks apart. MAIN OUTCOME MEASURES: Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively. RESULTS: Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control. CONCLUSIONS: PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation.

4.
Pediatr Blood Cancer ; 69(11): e29938, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36069542

RESUMO

BACKGROUND: A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e., social media, video games) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. The objective of this analysis was to describe the use and impact of digital technologies among AYAs with advanced cancer. PROCEDURE: As part of the "Exploring the Concept of a 'Good Death'" study, semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio recorded, deidentified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Directed content analysis was used for codebook creation. Three reviewers completed transcript coding and reconciled discrepancies. Thematic analysis identified hierarchical themes. The present analysis focused on the specific theme of "digital technologies as a support mechanism." RESULTS: When asked about sources of support, social media and multiplayer online games were most often recognized by AYAs. Three themes emerged regarding the role of digital technologies: distraction, maintaining existing peer support, and connecting with peers with cancer. Two AYAs acknowledged negative consequences of social media. CONCLUSIONS: AYAs with advanced cancer cite digital technologies as a mechanism for maintaining and seeking peer support. Digital technologies may be leveraged to provide psychosocial support for AYAs with advanced cancer.


Assuntos
Tecnologia Digital , Neoplasias , Adolescente , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Grupo Associado , Adulto Jovem
5.
J Pediatr Psychol ; 47(10): 1125-1134, 2022 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-35689646

RESUMO

OBJECTIVE: Youth and adolescents with type 1 diabetes (T1D) are at risk for poor health outcomes. Understanding if psychological factors shortly following diagnosis, such as diabetes distress and resilience, predict glycated hemoglobin (A1C) trajectories may help inform both optimal timing and content of psychosocial interventions for youth with T1D. METHODS: Youth and adolescents (N = 34) with newly diagnosed T1D completed distress and resilience measures at baseline and 3 months following diagnosis. Using multilevel modeling, we predicted A1C trajectories up to 3 years following diagnosis. RESULTS: We found that in separate models, higher 3-month diabetes distress and lower 3-month resilience predicted larger increases in A1C years 1-3 following diagnosis. CONCLUSIONS: Our findings suggest that targeting resilience and diabetes distress within 3 months following diagnosis has implications for the yearly rate of A1C increase up to 3 years later.


Assuntos
Diabetes Mellitus Tipo 1 , Adolescente , Humanos , Diabetes Mellitus Tipo 1/psicologia , Hemoglobinas Glicadas/análise
6.
BMC Palliat Care ; 21(1): 82, 2022 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-35585525

RESUMO

BACKGROUND: Psychological distress is prevalent among adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT). The Promoting Resilience in Stress Management (PRISM) intervention is a resilience-coaching program that has been shown to mitigate distress and improve quality of life among AYAs receiving chemotherapy for newly diagnosed or advanced cancer. This article describes the protocol of an ongoing randomized-controlled trial (RCT) examining the efficacy of PRISM among AYAs receiving HCT for cancer and/or blood disorders. METHODS/DESIGN: The goal of this multi-site, parallel, RCT is to evaluate the effect of PRISM compared to psychosocial usual care (UC) among AYAs receiving HCT. Our primary hypothesis is that AYAs who receive PRISM will report lower depression and anxiety 6-months following enrollment compared to those who receive UC. The PRISM program includes four scripted coaching sessions targeting skills in stress-management, goal setting, cognitive-restructuring, and meaning-making, followed by a facilitated family meeting. Sessions are delivered one on one, 1-2 weeks apart, in-person or via videoconference. We aim to recruit 90 AYAs from 4 US pediatric AYA oncology centers. Eligible AYAs are aged 12-24 years; receiving HCT for malignancy or a bone marrow failure syndrome associated with cancer predisposition; < 4 weeks from their HCT date; able to speak English and read in English or Spanish; and cognitively able to complete sessions. Enrolled AYAs are randomized 1:1 within each site to receive PRISM+UC or UC alone. AYAs on both study-arms complete patient-reported outcome surveys at baseline, 3- and 6-months. Age-valid instruments assess depression and anxiety, overall and cancer-specific health-related quality of life, symptom burden, resilience, and hope. Covariate-adjusted regression models will compare AYA-reported depression and anxiety at 6-months in the PRISM versus UC groups. Secondary and exploratory objectives include assessments of PRISM's cost-effectiveness and its impact on (i) parent and caregiver quality of life and mental health, (ii) pharmaco-adherence to oral graft-versus-host disease (GVHD) prophylaxis, (iii) biologic outcomes such as transplant engraftment and graft-versus-host disease, and (iv) biomarkers of stress such as heart rate variability and the Conserved Transcriptional Response to Adversity (CTRA) gene expression profile. DISCUSSION: If successful, this study has the potential to address a critical gap in whole-patient care for AYAs receiving HCT. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03640325 , August 21, 2018.


Assuntos
Doença Enxerto-Hospedeiro , Transplante de Células-Tronco Hematopoéticas , Neoplasias , Resiliência Psicológica , Adolescente , Criança , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Neoplasias/complicações , Neoplasias/psicologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico/psicologia , Estresse Psicológico/terapia , Adulto Jovem
7.
J Pediatr Nurs ; 62: 164-170, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34294485

RESUMO

PURPOSE: Our goal was to explore parental views on the challenges and stressors of transition to young adulthood for adolescents with type 1 diabetes and to describe specific strategies used to reduce parents' own stress during this time. DESIGN AND METHODS: Focus groups with 39 parents of adolescents with type 1 diabetes were conducted in the greater Seattle area. Semi-structured prompts addressed adolescents' self-care tasks, parental assistance with care, challenges and barriers with self-care tasks, and stress/pressure around self-care. Data was analyzed using qualitative methods for emerging themes. RESULTS: Parental stress was heightened when adolescents were approaching common developmental milestones such as driving, moving out, and engaging in risky behaviors that could be exacerbated by poor diabetes management. Thus, most parents reported providing assistance even late into adolescence. Parents shared strategies for guiding adolescents' transition from assisted to independent care with an emphasis on active behaviors parents could continue, thereby lowering their own stress. CONCLUSIONS: Parents of adolescents with type 1 diabetes experienced significant stress around their children's transition to independent diabetes self-care management. PRACTICE IMPLICATIONS: As part of overall preparation for transition, care providers should be encouraged to communicate with parents about these common stressors and promising avenues for nurturing a teen's independence.


Assuntos
Diabetes Mellitus Tipo 1 , Adolescente , Adulto , Criança , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiologia , Grupos Focais , Humanos , Relações Pais-Filho , Pais , Autocuidado , Adulto Jovem
8.
Cancer ; 127(23): 4504-4511, 2021 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-34358332

RESUMO

BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience-coaching program, and 2) integrating ACP into that program, among AYAs with AC. METHODS: Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management-Advanced Cancer (PRISM-AC) program included PRISM's standard sessions targeting stress-management, goal-setting, cognitive-restructuring, and meaning-making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA-specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4-session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient-reported anxiety, depression, and hope were examined descriptively. RESULTS: Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty-two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. CONCLUSIONS: Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. LAY SUMMARY: Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience-coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management-Advanced Cancer program to be feasible (≥70% intervention-completion) and highly acceptable (positive post-participation feedback, no evidence of participant-distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias , Resiliência Psicológica , Adolescente , Adulto , Criança , Estudos de Coortes , Estudos de Viabilidade , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Estresse Psicológico/etiologia , Adulto Jovem
9.
Support Care Cancer ; 29(7): 3773-3781, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33219407

RESUMO

OBJECTIVE: In adolescents and young adults (AYAs) with cancer, we examined (1) the distribution and type of traumatic events (TEs) experienced prior to baseline assessment and (2) how a resilience intervention, Promoting Resilience in Stress Management (PRISM), impacted changes in patient-reported outcomes (PROs) for AYAs with and without TEs. METHODS: AYAs (12-25 years) within 1-10 weeks of diagnosis of new malignancy or ever diagnosed with advanced cancer were enrolled and randomly assigned to usual care (UC) with or without PRISM. To assess TEs, we screened medical records for traditionally defined adverse childhood experiences (ACEs) and medical traumatic events. Age-validated PROs assessed resilience, benefit-finding, hope, generic health-related quality of life (QoL), cancer-specific QoL, depression, and anxiety at enrollment and 6 months later. We calculated effect sizes (Cohen's d) for PRISM vs. UC effect on PRO score change at 6 months for 1+ TEs and 0 TE groups. RESULTS: Ninety-two AYAs enrolled and completed baseline surveys (44-UC, 48-PRISM; N = 74 at 6 months, 38-UC, 36-PRISM); 60% experienced 1+ TEs. PROs at baseline were similar across groups. PRISM's effect on score change was greater (Cohen's d ≥ 0.5) for the 1+ TE group on domains of benefit-finding and hope; and similar (d < 0.5) on domains of resilience, depression, anxiety, and both generic and cancer-specific QoL. CONCLUSIONS: In AYAs with cancer, TEs occurred at similar rates as the general population. PRISM may be particularly helpful for improving benefit-finding and hope for those who have experienced TEs.


Assuntos
Experiências Adversas da Infância/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica/ética , Estresse Psicológico/psicologia , Ferimentos e Lesões/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Adulto Jovem
10.
J Pediatr Nurs ; 61: 280-283, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34375781

RESUMO

BACKGROUND: Screening for mental health comorbidities is recommended in adolescents and young adults (AYAs) with diabetes. There is a paucity of data on mental health comorbidities in AYAs with type 2 diabetes (T2D). OBJECTIVE: To assess rates of depression, suicidal ideation, and diabetes distress (DD) in AYAs with T2D overall and by sociodemographic and clinical factors. METHODS: AYAs with T2D ages 13-21 years seen in a pediatric diabetes clinic between March 2018 and June 2019 completed the Patient Health Questionnaire-9 (PHQ-9) for depression screening and the Problem Areas in Diabetes - teen version (PAID-T) survey to assess DD. Chi-square tests were used to assess whether rates of depression and DD were associated with participant characteristics. RESULTS: The sample consisted of 64 AYAs with T2D (58% female, mean age 15.8 ± 2.0 years, mean HbA1c 8.3% ± 2.6%, mean BMI z-score 2.2 ± 0.6, 59% on insulin). Overall, 31% of participants had high depression and/or DD. Twenty-two percent of participants reported high depressive symptoms and 9% endorsed suicidal ideation on the PHQ-9. There were no differences in rates of depression by sociodemographic factors. Twenty-three percent of participants reported high DD. Rates of DD were higher among those on insulin (p = 0.014) and on public health insurance (p = 0.014). CONCLUSIONS: Almost 1 in 3 AYAs with T2D endorsed depression and/or DD. Our findings support the importance of mental health screening in AYAs with T2D, as well as the need for strategies to address psychological comorbidities in this population.


Assuntos
Diabetes Mellitus Tipo 2 , Adolescente , Adulto , Criança , Depressão/diagnóstico , Depressão/epidemiologia , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/epidemiologia , Feminino , Humanos , Masculino , Saúde Mental , Fatores Sociodemográficos , Ideação Suicida , Adulto Jovem
11.
Pediatr Diabetes ; 21(3): 533-551, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31863541

RESUMO

BACKGROUND: An understanding of acceptability among potential intervention participants is critical to the design of successful real-world financial incentive (FI) programs. The purpose of this qualitative study was to explore adolescent and parent perspectives on the acceptability of using FI to promote engagement in diabetes self-care in adolescents with type 1 diabetes (T1D). METHODS: Focus groups with 46 adolescents with T1D (12-17 years old) and 39 parents of adolescents with T1D were conducted in the Seattle metropolitan area. Semistructured questions addressed participants' current use of incentives to promote change in diabetes self-care and receptivity to a theoretical incentive program administered by a third-party. Qualitative data were analyzed and emergent themes identified. RESULTS: Three thematic categories informed participant views about the acceptability of FI programs: (a) the extent to which using FIs in the context of diabetes management fit comfortably into a family's value system, (b) the perceived effectiveness for FIs to promote improved diabetes self-care, and (c) the urgent need for improved self-care due to the threat of diabetes-related health complications. These factors together led most parents and adolescents to be open to FI program participation. CONCLUSIONS: The results from this qualitative study suggest that well-designed FI programs to support diabetes management are acceptable to families with adolescents with T1D. Additionally, the use of FIs may have the potential to support adolescents with T1D in developing strong self-care habits and ease the often-turbulent transition to independent self-care.


Assuntos
Diabetes Mellitus Tipo 1 , Apoio Financeiro , Motivação/fisiologia , Autocuidado , Adolescente , Comportamento do Adolescente/fisiologia , Comportamento do Adolescente/psicologia , Atitude Frente a Saúde , Criança , Diabetes Mellitus Tipo 1/economia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Feminino , Grupos Focais , Promoção da Saúde/economia , Promoção da Saúde/métodos , Humanos , Masculino , Relações Pais-Filho , Pais/psicologia , Percepção/fisiologia , Pesquisa Qualitativa , Autocuidado/economia , Autocuidado/métodos , Autocuidado/psicologia
12.
Palliat Med ; 34(3): 336-348, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31680625

RESUMO

BACKGROUND: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer. AIM: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics. DESIGN: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8-10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5. SETTING/PARTICIPANTS: Participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children's Hospital. RESULTS: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less. CONCLUSION: The "Promoting Resilience in Stress Management" intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.


Assuntos
Neoplasias/prevenção & controle , Neoplasias/psicologia , Cuidados Paliativos , Resiliência Psicológica , Estresse Psicológico/prevenção & controle , Estresse Psicológico/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Psicoterapia , Qualidade de Vida , Fatores Socioeconômicos , Adulto Jovem
13.
J Psychosoc Oncol ; 38(1): 118-124, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31456508

RESUMO

The aim of this analysis was to explore intra-family longitudinal relationships in psychosocial well-being among adolescent and young adults (AYAs, Mage = 17, SD = 2.1) with cancer and their mothers using data from a multi-site, prospective, survey-based study. AYA-mother dyads (n = 14 dyads) completed validated patient reported outcome (PRO) measures of self-perceived resilience [Connor-Davidson resilience scale (CD-RISC-10)] and distress [Kessler-6 psychological distress scale (K6)] at baseline (14-60 days following diagnosis) and follow-up (3-6 months later). Higher AYA distress predicted better maternal resilience, whereas higher maternal distress predicted worse AYA resilience. Thus, processes of resilience between AYAs and their mothers may differ.


Assuntos
Mães/psicologia , Neoplasias/psicologia , Angústia Psicológica , Resiliência Psicológica , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mães/estatística & dados numéricos , Neoplasias/terapia , Estudos Prospectivos , Inquéritos e Questionários , Adulto Jovem
14.
Psychooncology ; 28(7): 1470-1476, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31037789

RESUMO

OBJECTIVE: Adolescents and young adults (AYAs) with cancer are at high risk of negative psychosocial outcomes. Promoting Resilience in Stress Management (PRISM), a novel, brief, skill-based intervention, has demonstrated efficacy in improving psychosocial well-being for AYAs. We utilized data from a recent randomized trial of PRISM versus usual care (UC) to categorize and explore group differences in change trajectories of patient reported outcomes (PROs) over time. METHODS: One hundred English-speaking AYAs (aged 12-25 years old) with cancer were randomized to PRISM versus UC. At enrollment and 6 months later, AYAs completed validated PROs measuring resilience (Connor-Davidson Resilience Scale [CDRISC-10]), hope (Hope Scale), benefit finding (Benefit and Burden Scale for Children), cancer-specific quality of life (Pediatric Quality of Life [PedsQL] Cancer Module), and distress (Kessler-6). Patient response trajectories were categorized as "improved," "consistently well," "consistently at risk," or "deteriorated" using minimal clinically important differences (MCIDs) or established measure cutoffs for all PROs. Positive response trajectories consisted of the first two categories ("improved" and "consistently well"), and negative response trajectories consisted of the latter two categories ("consistently at risk" and "deteriorated"). RESULTS: Across all PROs, more patients in the PRISM arm "improved" in psychosocial well-being over time, and fewer PRISM recipients "deteriorated" over time. Across all PROs, a greater proportion of PRISM participants (vs UC) experienced positive response trajectories. Across all PROs, a greater proportion of UC participants experienced negative response trajectories. CONCLUSIONS: PRISM shows evidence of both a prevention effect and an intervention effect. Thus, PRISM may serve as a viable prevention and early intervention model for psychosocial care.


Assuntos
Neoplasias/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Estresse Psicológico/prevenção & controle , Adaptação Psicológica , Adolescente , Adulto , Cuidadores/psicologia , Feminino , Esperança , Humanos , Masculino , Neoplasias/complicações , Apoio Social , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Adulto Jovem
15.
Pediatr Blood Cancer ; 66(1): e27485, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30270489

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk for poor psychosocial outcomes, perhaps because they have not acquired skills to navigate the adversities of illness. In a recent phase II randomized controlled trial (RCT), the "Promoting Resilience in Stress Management" (PRISM) intervention was associated with improved patient-reported resilience, quality of life, and distress. In this planned analysis of secondary aims, we hypothesized PRISM would also improve targeted coping skills of hopeful thinking, benefit finding, and goal setting. METHODS: We conducted this parallel RCT at Seattle Children's Hospital from January 2015 to October 2016. English-speaking AYAs (12-25 years old) with cancer were randomized one-to-one to PRISM or usual care (UC). PRISM teaches stress-management, goal-setting, cognitive-reframing, and meaning-making skills in four sessions delivered in-person every other week. Participants completed surveys at enrollment and 6 months later. Mixed effects linear regression models evaluated associations between PRISM and benefit finding (Benefit-Finding Scale for Children), hopeful thinking (Hope Scale), and an exploratory outcome of goal setting (queried with open-ended items about participant's goals, measured qualitatively by three blinded reviewers). RESULTS: Of N = 92 AYAs (48 PRISM, 44 UC), 73% were 12-17 years old, 43% female, and 62% diagnosed with leukemia or lymphoma. PRISM was associated with improved benefit finding and hope with moderate-to-large effect sizes-benefit finding: +3.1 points, 95% CI 0.0, 6.2, d = 0.4, and P = 0.05; and hope: +3.6 points, 95% CI 0.7, 6.4, d = 0.6, and P = 0.01. We did not detect changes in goal setting (-0.5 points, 95% CI -1.2, 0.3, d = -0.3, P = 0.23). CONCLUSIONS: PRISM was associated with improvements in benefit finding and hopeful thinking, two adaptive coping skills which may mitigate long-term psychosocial risk.


Assuntos
Adaptação Psicológica , Aconselhamento/métodos , Neoplasias/terapia , Educação de Pacientes como Assunto/métodos , Psicoterapia , Resiliência Psicológica , Estresse Psicológico/prevenção & controle , Adolescente , Adulto , Criança , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/epidemiologia , Neoplasias/psicologia , Prognóstico , Qualidade de Vida , Adulto Jovem
16.
J Med Internet Res ; 21(6): e12149, 2019 05 30.
Artigo em Inglês | MEDLINE | ID: mdl-31199310

RESUMO

BACKGROUND: A majority of adolescents report the use of some form of social media, and many prefer to communicate via social networking sites. Social media may offer new opportunities in diabetes management, particularly in terms of how health care teams provide tailored support and treatment to adolescents with diabetes. OBJECTIVE: The aim of this study was to explore the experiences and perspectives of adolescents with type 1 diabetes on the feasibility of social media use as a tool to collaboratively manage their diabetes with their diabetes care team. METHODS: Focus groups of adolescents with type 1 diabetes were conducted in the Seattle metropolitan area in Washington State. Semistructured questions were used to elicit views around the preferred means of communication with the adolescents' diabetes care team, how to best support diabetes self-management, and how social media could be used outside of the clinic setting by the diabetes care team to engage with adolescents with type 1 diabetes. Focus groups were audio recorded and transcribed verbatim. Qualitative content analysis was carried out, and emergent themes were subsequently mapped onto 4 domains of feasibility, which included acceptability, demand, implementation, and practicality. RESULTS: Participants included 45 adolescents with type 1 diabetes (mean age 15.9, SD 1.7 years; 58% male; diabetes duration mean 6.2, SD 3.6 years; 76% on insulin pumps; 49% wore continuous glucose monitors; 93% reported use of social media; 84% used smartphones as the primary means for social media access). A total of 7 major topics were identified and mapped onto areas consistent with our focus on feasibility. For acceptability and demand, participants expressed how communication over social media could help facilitate (1) improved communication outside of clinic visits to optimize diabetes management, (2) independence in diabetes self-management, (3) connection to other youth with diabetes for additional diabetes support, and (4) delivery of more timely and personalized care. Addressing implementation and practicality, participants shared the need to (1) ensure patient privacy, (2) maintain professional nature of provider-patient relationship, and (3) recognize that social media is not currently used for medical care by youth with diabetes. CONCLUSIONS: Adolescents with type 1 diabetes expressed interest in the use of social media as a tool to support diabetes management and increase engagement with their diabetes care team. Specific implementation measures around privacy and professionalism should be considered when developing a social media intervention to facilitate communication between adolescents and care teams.


Assuntos
Diabetes Mellitus Tipo 1/psicologia , Mídias Sociais/normas , Adolescente , Feminino , Grupos Focais , Humanos , Masculino
17.
Cancer ; 124(19): 3909-3917, 2018 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-30230531

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk for poor psychosocial outcomes. This study aimed to determine whether a novel intervention targeting resilience resources would improve patient-reported resilience, quality of life, and psychological distress. METHODS: In this parallel, phase 2 randomized controlled trial, English-speaking AYAs (12-25 years old) with cancer were randomized to the Promoting Resilience in Stress Management (PRISM) intervention or usual care (UC). PRISM is a brief, skills-based intervention targeting stress management, goal setting, cognitive reframing, and meaning making. Participants completed surveys at enrollment and 6 months. Mixed effects regression models evaluated associations between PRISM and the primary outcome (10-item Connor-Davidson Resilience Scale scores) and secondary outcomes (generic and cancer-related quality of life [Pediatric Quality of Life modules], psychological distress [Kessler-6], and anxiety/depression [Hospital Anxiety and Depression]) at 6 months. RESULTS: Ninety-two AYAs were enrolled, were randomized, and completed baseline surveys (48 in the PRISM group and 44 in the UC group); 73% were 12 to 17 years old, and 62% had leukemia or lymphoma. Attrition was primarily due to medical complications and/or death; 36 PRISM participants and 38 UC participants completed 6-month surveys. PRISM was associated with improved resilience (+3.0 points; 95% confidence interval [CI], 0.5-5.4; P = .02) and cancer-specific quality of life (+9.6; 95% CI, 2.6-16.7; P = .01) and reduced psychological distress (-2.1; 95% CI, -4.1 to -0.2; P = .03) but not generic quality of life (+7.2; 95% CI, -0.8 to 15.2; P = .08). Although anxiety was similar between the groups, 2 PRISM participants (6%) and 8 UC participants (21%) met the criteria for depression at 6 months (odds ratio, 0.09; 95% CI, 0.01-1.09; P = .06). CONCLUSIONS: PRISM was associated with improved psychosocial outcomes in comparison with UC, suggesting that brief, skills-based interventions for AYAs may provide a benefit.


Assuntos
Aconselhamento/métodos , Neoplasias/psicologia , Neoplasias/terapia , Psicoterapia/métodos , Resiliência Psicológica , Adolescente , Adulto , Idade de Início , Criança , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Educação de Pacientes como Assunto/métodos , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia , Estresse Psicológico/terapia , Resultado do Tratamento , Adulto Jovem
18.
Pediatr Diabetes ; 19(7): 1322-1330, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29927039

RESUMO

OBJECTIVES: The primary objective was to investigate the mediating effects of diabetes management in the relationship between diabetes symptoms and generic health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with type 1 diabetes. The secondary objective explored patient health communication and perceived treatment adherence barriers as mediators in a serial multiple mediator model. METHODS: The PedsQL 3.2 Diabetes Module 15-item diabetes symptoms summary score, 18-item diabetes management summary score, and PedsQL 4.0 generic core scales were completed in a 10-site national field test study by 418 AYA aged 13 to 25 years with type 1 diabetes. Diabetes symptoms and diabetes management were tested for bivariate and multivariate linear associations with overall generic HRQOL. Mediational analyses were conducted to test the hypothesized mediating effects of diabetes management as an intervening variable between diabetes symptoms and generic HRQOL. RESULTS: The predictive effects of diabetes symptoms on HRQOL were mediated in part by diabetes management. In predictive analytics models utilizing multiple regression analyses, demographic and clinical covariates, diabetes symptoms, and diabetes management significantly accounted for 53% of the variance in generic HRQOL (P < 0.001), demonstrating a large effect size. Patient health communication and perceived treatment adherence barriers were significant mediators in an exploratory serial multiple mediator model. CONCLUSIONS: Diabetes management explains in part the effects of diabetes symptoms on HRQOL in AYA with type 1 diabetes. Patient health communication to healthcare providers and perceived treatment adherence barriers further explain the mechanism in the relationship between diabetes symptoms and overall HRQOL.


Assuntos
Diabetes Mellitus Tipo 1/psicologia , Gerenciamento Clínico , Qualidade de Vida , Adolescente , Análise Fatorial , Feminino , Comunicação em Saúde , Humanos , Masculino , Inquéritos e Questionários , Cooperação e Adesão ao Tratamento , Adulto Jovem
19.
J Pediatr Psychol ; 43(6): 645-653, 2018 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-29373703

RESUMO

Objectives: Our aims were to describe stress trajectories for newly diagnosed type 1 diabetes (T1D) in adolescents and their parents, explore whether resilience is associated with stress trajectories, and to examine the effects of stress trajectories on diabetes-specific outcomes. Methods: Fifty-nine youth aged 10-18 years with newly diagnosed T1D and a primary caregiver were followed for 12 months. Stress and resilience were assessed using questionnaires every 3 months, and diabetes-specific outcomes (self-care, quality of life, and hemoglobin A1C) at 6 and 12 months. Parent and adolescent stress trajectories were identified using semiparametric group-based modeling. Results: Four stress trajectories emerged for parents and three emerged for adolescents. Adolescent trajectories were stable throughout the 12 months, and those with stable low stress had the highest levels of resilience. Further, the stable low stress group had higher quality of life scores at 12-month postdiagnosis. In contrast, stress for parents changed considerably over the 12-month period, and trajectory groups did not associate with 12-month outcomes. Conclusions: Distinct patterns of stress emerged for both the adolescent and parent cohorts. Resilience at the time of diagnosis was particularly protective for adolescents. These results suggest that stress-reducing and resilience-promoting interventions for newly diagnosed adolescents with T1D may have potential to improve longer-term outcomes.


Assuntos
Cuidadores/psicologia , Diabetes Mellitus Tipo 1/psicologia , Pais/psicologia , Estresse Psicológico/etiologia , Adolescente , Criança , Diabetes Mellitus Tipo 1/diagnóstico , Feminino , Seguimentos , Humanos , Masculino , Qualidade de Vida , Resiliência Psicológica , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Inquéritos e Questionários
20.
Qual Life Res ; 27(9): 2295-2303, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-29785681

RESUMO

OBJECTIVES: The objective was to investigate the patient-reported diabetes symptoms predictors of generic health-related quality of life (HRQOL) in adolescents and young adults (AYA) with type 1 or type 2 diabetes. METHODS: The 15-item PedsQL™ 3.2 Diabetes Module Diabetes Symptoms Summary Score and PedsQL™ 4.0 Generic Core Scales were completed in a 10-site national field test study by 513 AYA ages 13-25 years with type 1 (n = 424) or type 2 (n = 89) diabetes. Diabetes symptoms were tested for bivariate and multivariate linear associations with generic HRQOL. RESULTS: Diabetes symptoms were associated with decreased HRQOL in bivariate analyses. In predictive analytics models utilizing hierarchical multiple regression analyses controlling for relevant demographic and clinical covariates, diabetes symptoms accounted for 38 and 39% of the variance in patient-reported generic HRQOL for type 1 and type 2 diabetes, respectively, reflecting large effect sizes. The diabetes symptoms facets hyperglycemia symptoms, hypoglycemia symptoms, and nonspecific diabetes symptoms individually accounted for a significant percentage of the variance in separate exploratory predictive analytics models after controlling for demographic and clinical covariates, with small-to-large effect sizes. CONCLUSIONS: Diabetes symptoms are potentially modifiable predictors of generic HRQOL in AYA with diabetes. Identifying specific diabetes symptoms or symptoms facets that are the most important predictors from the patient perspective facilitates a patient-centered approach in clinical research, clinical trials, and practice designed to enhance overall generic HRQOL in AYA with diabetes.


Assuntos
Diabetes Mellitus Tipo 2/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Diabetes Mellitus Tipo 2/patologia , Feminino , Humanos , Masculino , Inquéritos e Questionários , Adulto Jovem
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