Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers

Sawyer, Susan Μ; McNeil, Robyn; McCarthy, Maria; Orme, Lisa; Thompson, Kate; Drew, Sarah; Dunt, David

doi:10.1007/s00520-017-3630-y

Cited by 77 publications

(63 citation statements)

References 40 publications

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“…Additionally, AYAs' course of life might be delayed, which puts them at greater risk for poorer functioning, lower quality of life, and distress later in life . Therefore, when planning a return to school/work, these goal conflicts need to be taken into account and AYAs may need additional guidance from educational and vocational advisors within school and/or from community and government organisations around meaningful goal setting . Adolescents and young adults experience different barriers and opportunities, and, therefore, their needs are very subjective.…”

Section: Discussionmentioning

confidence: 99%

“…Adolescents and young adults should be screened for educational and vocational difficulties as suggested by the psychosocial standard of care guidelines . Further access to interventions tailored to AYAs' needs and support systems such as engagement with educational advisors or promoting use of online forums/support groups for those with identified difficulties could be offered . If young cancer survivors do not successfully reintegrate into the education or employment system in early survivorship, they may experience long‐term implications in terms of earning and career potential, course of life, mental health, and social well‐being …”

Section: Discussionmentioning

confidence: 99%

“…12,22 Therefore, when planning a return to school/work, these goal conflicts need to be taken into account and AYAs may need additional guidance from educational and vocational advisors within school and/or from community and government organisations around meaningful goal setting. 42…”

Section: Discussionmentioning

confidence: 99%

“…44 Further access to interventions tailored to AYAs' needs and support systems such as engagement with educational advisors or promoting use of online forums/support groups for those with identified difficulties could be offered. 42,43,45 If young cancer survivors do not successfully reintegrate into the education or employment system in early survivorship, they may experience long-term implications in terms of earning and career potential, 7 course of life, 22 mental health, 46 and social well-being. 5 5 | CONCLUSION Support services for AYA cancer survivors need to take into account the various challenges of early survivorship-cognitive, physical, and social-while recognising that this is a resilient group who may nevertheless be profoundly affected by their experiences.…”

Section: Discussionmentioning

confidence: 99%

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Educational and vocational goal disruption in adolescent and young adult cancer survivors

et al. 2017

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Educational and vocational goal disruption in adolescent and young adult cancer survivors

et al. 2017

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“…Previous studies in the United States and Australia showed that AYAs with cancer have unmet information, service and supportive care needs [4,[6][7][8][9][10][11][12][13]. According to a systematic review conducted by Galán et al [14], the most common needs for AYA cancer survivors are "individualized information and advice", "counseling and psychological support" and " social support, and social relationship".…”

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confidence: 99%

Unmet supportive care needs and associated factors among young adult cancer patients in Japan

Okamura¹,

Fujimori²,

Sato³

et al. 2020

Preprint

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Background: Young adult cancer patients often face unique challenges and have potential unmet needs. This study aimed (1) to describe unmet supportive care needs among young adults with cancer in Japan, and (2) to identify its associated factors.Methods: In a cross-sectional web-based survey, 206 young adults with cancer were assessed for supportive care needs. Multiple regression analysis examined whether demographics, clinical variables and social support were associated with unmet supportive care needs.Results: A total of 206 patients (180 female) with a mean age of 33.7 years (SD=4.3, range: 22-39) participated. One hundred and fifty-eight participants (76.7%) reported at least one unmet supportive care needs. The top 20 unmet needs included 9 of the 10 psychological needs, 3 of the 5 physical and daily living needs, 8 of the 11 health system and information needs and 1 of the 5 sexuality needs. Multiple regression analysis revealed that perceived poorer PS, experience of change in work/school after a cancer diagnosis and poor social support were significantly associated with higher supportive care needs. The total score of supportive care needs was significantly associated with both psychological distress and QOL.Conclusions: More than 70% of young adult cancer survivors reported unmet supportive care needs and most of those were psychological needs. The findings suggest potential opportunities for intervention in addressing psychological needs rather than physical and information needs.

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A Mobile Instant Messaging–Delivered Psychoeducational Intervention for Cancer Caregivers

Cheng,

Ng,

Choi

et al. 2024

JAMA Netw Open

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ImportancePsychoeducational interventions (PEIs), which provide both information and emotional and psychosocial support, may address the unmet needs of the caregivers of adolescent and young adult patients with cancer.ObjectiveTo explore the effects of an instant messaging–delivered PEI on anxiety, depression, quality of life (QOL), and coping and determine whether the intervention reduces caregivers’ unmet needs.Design, Setting, and ParticipantsThis randomized clinical trial using an intention-to-treat protocol was conducted from April 1 to September 14, 2022, in a tertiary cancer hospital in China and included caregivers of patients diagnosed with cancer at age 15 to 39 years recruited using convenience sampling.InterventionCaregivers were allocated 1:1 using a randomized block scheme to the intervention or control group. The intervention group received a 5-week PEI and usual care, whereas the control group received only usual care. The PEI was delivered through articles and calls through an instant messaging application.Main Outcomes and MeasuresThe primary outcomes were changes in the levels of caregivers’ anxiety and depression, measured using the 7-Item Generalized Anxiety Disorder Scale and the Patient Health Questionnaire 9, respectively. The secondary outcomes were changes in the levels of caregivers’ QOL, coping, and unmet needs.ResultsOf the 160 participants, 92 (57.5%) were male; mean (SD) age was 40.27 (8.33) years. Compared with the control group, the intervention group had significantly greater reduction in severity of anxiety (B = −3.231; 95% CI, −4.746 to −1.716; P &lt; .001) and depression (B = −3.253; 95% CI, −5.052 to −1.454; P &lt; .001), smaller reduction in QOL (B = 13.574; 95% CI, 0.488-26.661; P = .04), and greater reduction in unmet needs (B = −12.136; 95% CI, −18.307 to −5.965; P &lt; .001) after the intervention. Twelve weeks after baseline, the intervention group demonstrated a significantly greater reduction only in severity of anxiety (B = −1.890; 95% CI, −3.382 to −0.397; P = .01).Conclusions and RelevanceIn this randomized clinical trial of a mobile instant messaging–delivered PEI, caregivers’ unmet needs, anxiety, and depression decreased significantly and QOL declined at a significantly slower rate immediately after the intervention in the intervention group compared with the control group. A sustained effect on anxiety was observed 12 weeks after baseline.Trial RegistrationChinese Clinical Trial Registry identifier: ChiCTR2200055951

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Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers

Abstract: AYAs and parents had high levels of total and unmet service need, which were associated with greater emotional distress. These results highlight opportunities to re-orientate services to better meet AYA and parent needs.

Cited by 77 publications

References 40 publications

Educational and vocational goal disruption in adolescent and young adult cancer survivors

Educational and vocational goal disruption in adolescent and young adult cancer survivors

Unmet supportive care needs and associated factors among young adult cancer patients in Japan

A Mobile Instant Messaging–Delivered Psychoeducational Intervention for Cancer Caregivers

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