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1.
Article in English | MEDLINE | ID: mdl-38695773

ABSTRACT

Purpose: Young adult cancer survivors experience disruptions in various life domains (e.g., relationships, academic/career) during and after treatment. This study examined life disruptions and related supports to update interventions to improve psychological outcomes. Methods: In April-July 2023, young adult survivors (n = 23) were recruited (via clinics, support groups, nonprofit organizations, etc.) to complete semi-structured interviews assessing cancer's impact across life domains, how they coped with related disruptions, and facilitators to improved psychosocial well-being. We used a dual deductive-inductive approach to develop a codebook and then coded transcripts in Dedoose. Results: This sample was on average 33.7 years old (standard deviation [SD] = 4.4), 78.3% female, 73.9% non-Hispanic White, 47.8% married/cohabitating, 2.4 (SD = 1.0) years post-diagnosis, 1.4 years (SD = 0.9) post-treatment, and largely diagnosed with breast cancer (52.1%) or leukemia/lymphoma (34.7%). The most salient themes related to disruptions included mental health, feelings of isolation during survivorship, and disruptions to career and relationships with family or partners. Participants reported challenges navigating these feelings and disruptions, and difficulty understanding and conveying their needs. Many experienced limited support for navigating cancer-related trauma and life disruptions as a survivor. Participants also reported some positive impacts, like reevaluating their values and goals or feeling resilient, and emphasized the need to identify supports, accept that life had changed because of cancer, and have their needs and continued struggles validated by others during survivorship. Conclusions: Young adults experience ongoing disruptions across multiple life domains, underscoring the need for integrated, longer-term psychosocial supports to help them navigate these disruptions and reevaluate their goals.

2.
Contemp Clin Trials ; 141: 107545, 2024 06.
Article in English | MEDLINE | ID: mdl-38657732

ABSTRACT

BACKGROUND: Given the increasing number of young adult cancer survivors and the impacts of cancer on various life domains, interventions addressing the psychosocial needs of young adult survivors are crucial. However, such intervention research is limited, and the existing literature has often: 1) overlooked young adult survivors' psychosocial needs; 2) targeted depression, anxiety, or fear of recurrence - rather than positive outcomes like well-being; and 3) failed to consider scalable approaches, like digital health. METHODS: This paper documents the development and refinement of an 8-week digital, coach-assisted intervention targeting hope among young adult cancer survivors (ages 18-39, within 3 years of treatment completion) and presents the protocol of the 2-arm RCT (comparing intervention vs. attention control). The intervention builds upon a 2017-2018 pilot trial (n = 56); intervention refinements were based on subsequent semi-structured interviews among young adult survivors (n = 23). RESULTS: The pending trial design involves an increased sample size (n = 150) to increase power and diversified recruitment efforts (i.e., clinic-based, social media, community-based organizations, etc.) to facilitate intervention reach, accessibility, and scalability. The intervention was enhanced by integrating highly relevant theoretical and therapeutic frameworks, specifically the concept of hope and Acceptance and Commitment Therapy, as well as updating intervention delivery technology. Intervention outcomes include feasibility and acceptability at end-of-treatment and preliminary efficacy on hope (primary outcome) and quality of life measures (secondary outcomes) at end-of-treatment and 16-week follow-up. CONCLUSIONS: This paper may facilitate discussion regarding approaches for addressing the significant psychosocial challenges faced by young adult survivors and catalyze dissemination of trial results. TRIAL REGISTRATION: NCT05905250.


Subject(s)
Cancer Survivors , Adolescent , Adult , Female , Humans , Male , Young Adult , Anxiety/therapy , Anxiety/psychology , Cancer Survivors/psychology , Depression/therapy , Depression/psychology , Hope , Mentoring/methods , Psychosocial Intervention/methods , Quality of Life , Research Design , Randomized Controlled Trials as Topic
3.
Article in English | MEDLINE | ID: mdl-38156828

ABSTRACT

OBJECTIVE: To determine the average time from Amyotrophic Lateral Sclerosis (ALS) symptom onset to 11 pre-defined milestones, overall and according to ALS progression rate and geographic location. METHODS: Data were drawn from the Adelphi Real World ALS Disease-Specific ProgrammeTM, a point-in-time survey of neurologists caring for people living with ALS (pALS) conducted in France, Germany, Italy, Spain, the United Kingdom and the United States from 2020-2021. ALS progression rate was calculated using time since symptom onset and ALS Functional Rating Scale Revised score. RESULTS: Survey results were available for N = 1003 pALS (progression rate for N = 867). Mean time from symptom onset was 3.8 months to first consultation, 8.0 months to diagnosis, 16.2 months to employment change (part-time/sick leave/retirement/unemployment), 17.5 months to use of a walking aid, 18.5 months to first occurrence of caregiver support, 22.8 months to use of a wheelchair, 24.6 months to use of a communication aid, 27.3 months to use of a respiratory aid, 28.6 months to use of gastrostomy feeding, 29.7 months to use of eye gaze technology and 30.3 months to entering a care facility. Multivariate analysis indicated significant effects of fast (versus slow) progression rate on time to reach all 11 milestones, as well as US (versus European) location, age, body mass index and bulbar onset (versus other) on time to reach milestones. CONCLUSIONS: pALS rapidly reached clinical and disease-related milestones within 30 months from symptom onset. Milestones were reached significantly faster by pALS with fast versus slow progression. Geographic differences were observed.


Subject(s)
Amyotrophic Lateral Sclerosis , Humans , Amyotrophic Lateral Sclerosis/diagnosis , Amyotrophic Lateral Sclerosis/epidemiology , Disease Progression , Cross-Sectional Studies , Body Mass Index , Time Factors
4.
Conf Proc IEEE Eng Med Biol Soc ; 2006: 5001-4, 2006.
Article in English | MEDLINE | ID: mdl-17946275

ABSTRACT

We have constructed a portable needle-free drug injection (NFI) device based upon a custom voice-coil linear actuator. Our actuator is optimized to provide high instantaneous force (>200 N) and power (4 kW) while still allowing a total stroke of 25 mm. The actuator is relatively inexpensive, compact, and lightweight, allowing it to serve as the force generator in a portable, reusable, handheld NFI system. The actuator is capable of accelerating liquid drug in quantities of up to 250 microL to a speed of more than 200 ms(-1). The repeatability of a 50 microL volume ejection is better than +/-1 microL.


Subject(s)
Drug Delivery Systems , Skin Absorption , Voice , Coloring Agents/pharmacology , Electric Power Supplies , Equipment Design , Injections, Jet , Injections, Subcutaneous , Magnetics , Models, Statistical , Needles , Pressure , Reproducibility of Results , Sensitivity and Specificity , Syringes
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