scholarly journals Long-term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

2019 ◽  
Vol 28 (3) ◽  
pp. 477-487 ◽  
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Claire Hulme ◽  
Rocio Rodriguez Lopez ◽  
Adam Glaser ◽  
...  
Keyword(s):  
Systematic Review ◽  
Young Adult ◽  
Supportive Care ◽  
Brain Tumour ◽  
Supportive Care Needs ◽  
Adolescent And Young Adult ◽  
Care Needs

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

scholarly journals Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey

2021 ◽  
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-Williams ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Psychological Domain ◽  
Long Term Follow Up

Abstract Introduction The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL). Methods Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC). Results In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. Conclusion This research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

OS10.6.A Supportive care needs of TYA childhood brain tumour survivors and their caregivers: a mixed methods study

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii14-ii14
Author(s):  
E Nicklin ◽  
G Velikova ◽  
A Glaser ◽  
N Sarwar ◽  
M Kwok-Williams ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Qualitative Data ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Structured Interviews ◽  
Care Needs ◽  
Long Term Follow Up

Abstract BACKGROUND Childhood brain tumour survivors and their family caregivers can experience many late effects of treatment including social, cognitive and physical issues. Yet, the supportive care needs of survivors, now teenagers and young adults (TYAs), and their caregivers population are largely unknown. We aimed to gain an in-depth understanding of this populations’ supportive care needs. MATERIAL AND METHODS This study used a convergent mixed methods design including quantitative (survey) and qualitative data (in-depth semi-structured interviews). Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, at least five years from diagnosis, currently aged 13–30 and their primary caregivers. The results from quantitative and qualitative data were integrated using a Joint Display Table. RESULTS 136 eligible survivors and caregivers (78 survivors/58 caregivers) were approached to take part in the survey. In total, 112 participants (69 survivors/43 caregivers) completed the survey. A further 22 participants took part in face-to-face semi-structured interviews (11 survivors/11 caregivers). The integrated findings indicate that both survivors and caregivers have unmet needs many years after diagnosis. TYA survivors specifically had high unmet needs in relation to their psychological health, social lives (including romantic relationships), employment, and independence. Caregivers experienced even more unmet needs - including regarding their own psychological well-being and survivors’ financial issues. Survivors further from diagnosis, unemployed survivors and single caregivers were more likely to report unmet needs. Barriers preventing survivors and caregivers accessing supportive services were highlighted, including (but not exclusive to) families not being aware of support available, location of services, and accessibility to information/support. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Understanding unmet needs and recognising what services are required is critical to improving survivor and caregiver quality of long-term survival.

scholarly journals Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it’s all the aftermath, and then you’re forgotten about”

2021 ◽  
Author(s):  
Emma Nicklin ◽  
Lucy Pointon ◽  
Adam Glaser ◽  
Naseem Sarwar ◽  
Michelle Kwok-Williams ◽  
...  
Keyword(s):  
Young Adult ◽  
Supportive Care ◽  
Late Effects ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Follow Up Care

Abstract Purpose Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. Methods Face-to-face semi-structured interviews were conducted with survivors aged 16–30 (n = 11) who were ≥ 5 years after diagnosis and caregivers (n = 11). Interviews were recorded and transcriptions thematically analysed. Results Four themes emerged: (1) preferences for support and support services (unmet needs). Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support. Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support. Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care. Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. Conclusions Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival.

scholarly journals Psychosocial Distress of Patients with Psoriasis: Protocol for an Assessment of Care Needs and the Development of a Supportive Intervention (Preprint)

2017 ◽  
Author(s):  
Jördis Maria Zill ◽  
Jörg Dirmaier ◽  
Matthias Augustin ◽  
Sarah Dwinger ◽  
Eva Christalle ◽  
...  
Keyword(s):  
Systematic Review ◽  
Supportive Care ◽  
Psychosocial Support ◽  
Meta Analysis ◽  
Phase 1 ◽  
Psychosocial Distress ◽  
Supportive Care Needs ◽  
Phase 2 ◽  
Care Needs ◽  
Supportive Intervention

BACKGROUND Psoriasis is a chronic inflammatory disease that is often associated with a number of somatic and mental comorbidity. Patients with psoriasis show an increased risk of depression and (social) anxiety. OBJECTIVE The aims of this study are 1) to explore the psychosocial distress of patients with psoriasis and to assess their care needs; and 2) to develop a supportive intervention based on the prior results. METHODS A multi-stage design with four phases combining quantitative and qualitative methodology will be used and conducted in two centers. 1) A scoping review and focus groups will be used to design a questionnaire to assess the psychosocial distress and care needs of the patients. 2) The questionnaire developed in phase 1 will be used in a cross-sectional survey to assess the extent of psychosocial distress and supportive care needs in 400 patients with psoriasis. 3) A systematic review and meta-analysis will be conducted to identify psychosocial and psychoeducational interventions for patients with psoriasis and to describe their effectiveness. 4) Based on the results of the phases 2 and 3 a manualized supportive intervention will be developed and the feasibility and acceptance of the intervention will be assessed. RESULTS Currently, phase 1 of the project has been completed and the recruitment for phase 2 has been started. The systematic review and meta-analysis of phase 3 are conducted simultaneously to phase 2 and results are expected soon. Phase 4 has not been started yet. CONCLUSIONS The expected results of this study will show the extent of psychosocial distress of patients with psoriasis in Germany and supplement previous research with findings about the supportive care needs of this patient group. Moreover, the developed intervention will help to address the psychosocial support needs of patients with psoriasis. Research shows that psychosocial support is strongly needed.

scholarly journals A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum

2017 ◽  
Vol 29 ◽  
pp. 60-70 ◽  
Author(s):  
Grigorios Kotronoulas ◽  
Constantina Papadopoulou ◽  
Kathryn Burns-Cunningham ◽  
Mhairi Simpson ◽  
Roma Maguire
Keyword(s):  
Systematic Review ◽  
Supportive Care ◽  
Supportive Care Needs ◽  
Care Needs

Health and supportive care needs of young adult cancer patients and survivors

2007 ◽  
Vol 1 (2) ◽  
pp. 137-145 ◽  
Author(s):  
Brad J. Zebrack ◽  
Jennifer Mills ◽  
Tammy S. Weitzman
Keyword(s):  
Young Adult ◽  
Supportive Care ◽  
Cancer Patients ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Young Adult Cancer

scholarly journals Systematic review of supportive care needs in patients with primary malignant brain tumors

2012 ◽  
Vol 14 (4) ◽  
pp. 392-404 ◽  
Author(s):  
E. Ford ◽  
S. Catt ◽  
A. Chalmers ◽  
L. Fallowfield
Keyword(s):  
Systematic Review ◽  
Brain Tumors ◽  
Supportive Care ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Malignant Brain Tumors
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