Defining patient-elicited concepts unique to adolescents and young adults with cancer.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 12118-12118
Author(s):  
Viswatej Avutu ◽  
Kathleen Lynch ◽  
Marie Barnett ◽  
Jacqueline Vera ◽  
Julia Lynne Glade Bender ◽  
...  
Keyword(s):  
Young Adults ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Tumor Biology ◽  
Total Sample ◽  
Patient Reported Outcome Measures ◽  
Adolescents And Young Adults ◽  
Long Term Effects ◽  
Patient Reported

12118 Background: Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to complex biopsychosocial variables and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology with differing care paradigms and service utilization. These issues, in conjunction with differences in tumor biology and lower accrual to clinical trials, have contributed to marginal improvements in outcomes for AYAs. Compounding this dilemma is a lack of validated patient-reported outcome measures (PROs) for AYAs. Tracking standardized PROs longitudinally is a crucial step in understanding psychosocial variables, identifying tailored needs, improving outcomes and standardizing care. However, developing a PRO tool for AYAs first requires identifying AYA-unique domains. Methods: Three, 90-minute focus groups were conducted with AYAs treated at Memorial Sloan Kettering in the context of 1) pediatric oncology, 2) medical oncology, and 3) either service. Topics explored included: experiences of cancer care as an AYA; physical, social and emotional concerns; and information needs, including appropriateness, timing, and depth of information. Thematic content analysis of transcripts was performed by four interdisciplinary coders in weekly iterative consensus rounds. Phase one consisted of identification of key domains to guide line-by-line coding with NVivo software. Phase two consisted of independent review and categorization of codes, followed by three successive consensus meetings to identify distinct themes. Results: A mean of 6 patients (range 5-7) participated in each of the 3 groups; the total sample (n = 17) included 9 males and 8 females, ages 19-35 years (median 26). Four AYA-unique themes were identified: 1. AYAs have an uncertain sense of the future and desire more engagement in conversations pertaining to survivorship, long-term effects and transition to outpatient life. 2. Cancer as an AYA is a socially-isolating experience, prompting a strong desire to connect with peers during and post-treatment. 3. AYAs want control over who can be present during discussions with their care team as the presence of loved ones can impede or facilitate communication. 4. AYAs may be living far away from loved ones during treatment and lack supports needed to help them navigate treatment and daily life. Conclusions: Concept elicitation via focus groups identified novel themes related to survivorship, isolation, communication and social support, which can inform development of AYA-specific PROs.

scholarly journals Conducting Web-Based Focus Groups With Adolescents and Young Adults

2021 ◽  
Vol 20 ◽  
pp. 160940692199687
Author(s):  
Courtney A. Brown ◽  
Anna C. Revette ◽  
Sarah D. de Ferranti ◽  
Holly B. Fontenot ◽  
Holly C. Gooding
Keyword(s):  
Qualitative Research ◽  
Young Adults ◽  
Focus Groups ◽  
Clinical Sample ◽  
Adolescents And Young Adults ◽  
Web Based ◽  
Disease Awareness ◽  
Sex With Men ◽  
Technical Platform

This methodologic paper aims to update researchers working with adolescents and young adults on the potentials and pitfalls associated with web-based qualitative research. We present a case study of synchronous web-based focus groups with 35 adolescents and young women ages 15–24 years old recruited from a clinical sample for a mixed methods study of heart disease awareness. We contrast this with two other studies, one using asynchronous web-based focus groups with 30 transgender youth ages 13 to 24 years old and another using synchronous web-based focus groups with 48 young men who have sex with men ages 18 to 26 years old, both recruited via social media. We describe general and logistical considerations, technical platform considerations, and ethical, regulatory, and research considerations associated with web-based qualitative research. In an era of technology ubiquity and dependence, researchers should consider web-based focus groups a potential qualitative research tool, especially when working with youth.

scholarly journals The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care

Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2675
Author(s):  
Pandora Patterson ◽  
Kimberley R. Allison ◽  
Helen Bibby ◽  
Kate Thompson ◽  
Jeremy Lewin ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Young Adults ◽  
Cancer Care ◽  
Young Patients ◽  
Adolescents And Young Adults ◽  
Adolescent And Young Adult ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Activity Data ◽  
Cancer Services

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Refinement and Psychometric Properties of the Self-Efficacy for Sleep Hygiene Inventory

2020 ◽  
pp. 019394592094097
Author(s):  
Christine S. Gipson ◽  
Jenifer M. Chilton ◽  
Eric Stocks
Keyword(s):  
Young Adults ◽  
Focus Groups ◽  
Self Efficacy ◽  
Psychometric Testing ◽  
Principal Component ◽  
Sleep Hygiene ◽  
Total Sample ◽  
The Self ◽  
Reliable Measure ◽  
Electronic Survey

The purpose of this study was to determine key concepts of self-efficacy for sleep hygiene among young adults/college students and sleep experts, and to refine the Self-Efficacy for Sleep Hygiene Inventory. The Self-Efficacy for Sleep Hygiene Inventory was revised using input from young adult focus groups and experts. Information from focus groups informed instrument revision. The revised instrument was distributed using an electronic survey to young adults age 18–26 years for a total sample of 296. A principal component analysis with Varimax Orthogonal Rotation was conducted resulting in a three-factor solution. Cronbach’s alphas were: .85 for Behaviors to Adopt (nine items), .79 for Manage Mindset and Environment (eight items), .70 for Behaviors to Avoid (eight items), and .88 for the inventory (twenty-five items). Initial psychometric testing of the Self-Efficacy for Sleep Hygiene Inventory-Revised indicates that it is a reliable measure of self-efficacy for sleep hygiene in young adults age 18–26 years.

scholarly journals A Cross-Sectional Survey Exploring the Impact of the COVID-19 Pandemic on the Cancer Care of Adolescents and Young Adults

2021 ◽  
Vol 28 (4) ◽  
pp. 3201-3213
Author(s):  
Kaitlyn Howden ◽  
Camille Glidden ◽  
Razvan G. Romanescu ◽  
Andrew Hatala ◽  
Ian Scott ◽  
...  
Keyword(s):  
Young Adults ◽  
Cancer Treatment ◽  
Cancer Care ◽  
Negative Impact ◽  
Positive Impact ◽  
Care Delivery ◽  
Adolescents And Young Adults ◽  
P Value ◽  
Cross Sectional Survey ◽  
The Impact

We aimed to describe the negative and positive impacts of changes in cancer care delivery due to COVID-19 pandemic for adolescents and young adults (AYAs) in Canada, as well as the correlates of negative impact and their perspectives on optimization of cancer care. We conducted an online, self-administered survey of AYAs with cancer living in Canada between January and February 2021. Multiple logistic regression was used to identify factors associated with a negative impact on cancer care. Of the 805 participants, 173 (21.5%) experienced a negative impact on their cancer care including delays in diagnostic tests (11.9%), cancer treatment (11.4%), and appointments (11.1%). A prior diagnosis of mental or chronic physical health condition, an annual income of <20,000 CAD, ongoing cancer treatment, and province of residence were independently associated with a negative cancer care impact (p-value < 0.05). The majority (n = 767, 95.2%) stated a positive impact of the changes to cancer care delivery, including the implementation of virtual healthcare visits (n = 601, 74.6%). Pandemic-related changes in cancer care delivery have unfavorably and favorably influenced AYAs with cancer. Interventions to support AYAs who are more vulnerable to the adverse effects of the pandemic, and the thoughtful integration of virtual care into cancer care delivery models is essential.

scholarly journals Capturing PROMs in Oncology Through Consistent Nutrition Risk Identification: An Opportunity to Optimize Care by Embedding Patient Participation Facilitated by eHealth Tools

2021 ◽  
pp. 1-2
Author(s):  
Susana  Couto Irving 
Keyword(s):  
Outcome Measures ◽  
Patient Participation ◽  
Cancer Care ◽  
Clinical Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Risk Identification ◽  
Nutrition Status ◽  
Pancreatic Tumors ◽  
Patient Reported

Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study). <b>Background:</b> E-health based patient-reported outcome measures (PROMs) have the potential to automate early identification of both nutrition status and distress status in cancer patients while facilitating treatment and encouraging patient participation. This cross-sectional study assessed the acceptability, accuracy, and clinical utility of PROMs collected via E-Health tools among patients undergoing treatment for stomach, colorectal, and pancreatic tumors. <b>Results:</b> Eight-nine percent mostly, or completely, agreed that PROMs via tablets should be integrated in routine clinical care. Men were significantly more likely to require help completing the questionnaires than women (inv.OR = 0.51, 95% CI = (0.27, 0.95), p = 0.035). The level of help needed increased by 3% with each 1-year increase in age (inv. OR = 1.03, 95% CI = (1.01, 1.06), p = 0.013). On average, a patient tended to declare weight which was 0.84 kg inferior to their true weight (Bland and Altman 95 % CI = (–3.9, 5.6); SD: 2.41) and a height which was 0.95 cm superior to their true height (Bland and Altman 95 % CI = (−5, 3.1); SD 2.08). Patient-reported nutrition status was significantly associated with the professionally generated assessment (95% CI = (2.27, 4.15), p &#x3c; 0.001). As nutrition status declined, the distress score increased (95%CI = (0.88, 1.68), p &#x3c; 0.001). Of the patients, 48.8% who were both distressed and malnourished requested supportive care to address their problems. <b>Conclusion:</b> Patient-reported assessments utilizing E-health tools are an accurate and efficient method to encourage patient participation in cancer care while simultaneously ensuring that regular assessment of psycho-social and nutritional aspects of care are efficiently integrated in the daily clinical routine.

scholarly journals What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Controlled Trial ◽  
Unmet Need ◽  
Care Staff ◽  
Trial Participation

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

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