Variations in supportive care needs of patients after diagnosis of localised cutaneous melanoma: a 2-year follow-up study

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.

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Prevalence and correlates of unmet supportive care needs in patients with resected invasive cutaneous melanoma

Annals of Oncology ◽

10.1093/annonc/mdu366 ◽

2014 ◽

Vol 25 (10) ◽

pp. 2052-2058 ◽

Cited By ~ 30

Author(s):

A. Molassiotis ◽

L. Brunton ◽

J. Hodgetts ◽

A.C. Green ◽

V.L. Beesley ◽

...

Keyword(s):

Supportive Care ◽

Cutaneous Melanoma ◽

Supportive Care Needs ◽

Care Needs

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Assessing the impact of diagnosis and the related supportive care needs in patients with cutaneous melanoma

Supportive Care in Cancer ◽

10.1007/s00520-014-2414-x ◽

2014 ◽

Vol 23 (3) ◽

pp. 779-789 ◽

Cited By ~ 26

Author(s):

Zoe Stamataki ◽

L. Brunton ◽

P. Lorigan ◽

A. C. Green ◽

J. Newton-Bishop ◽

...

Keyword(s):

Supportive Care ◽

Cutaneous Melanoma ◽

Supportive Care Needs ◽

Care Needs ◽

The Impact

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EP-1198: Low risk breast cancer patients’ supportive care needs and perceptions of follow-up care options

Radiotherapy and Oncology ◽

10.1016/s0167-8140(17)31634-1 ◽

2017 ◽

Vol 123 ◽

pp. S649

Author(s):

J. Kwan ◽

J. Croke ◽

J. Bender ◽

T. Panzarella ◽

K. Ubhi ◽

...

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Cancer Patients ◽

Low Risk ◽

Supportive Care Needs ◽

Breast Cancer Patients ◽

Care Needs ◽

Follow Up Care ◽

Risk Breast Cancer

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

Supportive Care in Cancer ◽

10.1007/s00520-021-06618-7 ◽

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.

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

Neuro-Oncology ◽

10.1093/neuonc/noab180.044 ◽

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.

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Prevalence and correlates of the supportive care needs of Italian early-stage melanoma patients in follow-up

Journal of Psychosocial Oncology ◽

10.1080/07347332.2019.1612973 ◽

2019 ◽

Vol 37 (6) ◽

pp. 746-757 ◽

Cited By ~ 1

Author(s):

Marco Miniotti ◽

Anita Zeneli ◽

Stefania Bassino ◽

Sara Pavan ◽

Simone Ribero ◽

...

Keyword(s):

Supportive Care ◽

Early Stage ◽

Supportive Care Needs ◽

Care Needs ◽

Melanoma Patients

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Personalizing post-treatment cancer care: a cross-sectional survey of the needs and preferences of well survivors of breast cancer

Current Oncology ◽

10.3747/co.26.4131 ◽

2019 ◽

Vol 26 (2) ◽

Cited By ~ 2

Author(s):

J. Y. Y. Kwan ◽

J. Croke ◽

T. Panzarella ◽

K. Ubhi ◽

A. Fyles ◽

...

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Supportive Care Needs ◽

Care Providers ◽

Specialist Care ◽

Care Needs ◽

Cross Sectional ◽

Perceived Satisfaction ◽

Follow Up Care

Background Improved treatments resulting in a rising number of survivors of breast cancer (bca) calls for optimization of current specialist-based follow-up care. In the present study, we evaluated well survivors of bca with respect to their supportive care needs and attitudes toward follow-up with various care providers, in varying settings, or mediated by technology (for example, videoconference or e-mail).Methods A cross-sectional paper survey of well survivors of early-stage pT1–2N0 bca undergoing posttreatment follow-up was completed. Descriptive and univariable logistic regression analyses were performed to examine associations between survivor characteristics, supportive care needs, and perceived satisfaction with follow-up options. Qualitative responses were analyzed using conventional content analysis.Results The 190 well survivors of bca who participated (79% response rate) had an average age of 63 ± 10 years. Median time since first follow-up was 21 months. Most had high perceived satisfaction with in-person specialist care (96%, 177 of 185). The second most accepted model was shared care involving specialist and primary care provider follow-up (54%, 102 of 190). Other models received less than 50% perceived satisfaction. Factors associated with higher perceived satisfaction with non-specialist care or virtual follow-up by a specialist included less formal education (p < 0.01) and more met supportive care needs (p < 0.05). Concerns with virtual follow-up included the perceived impersonal nature of virtual care, potential for inadequate care, and confidentiality.Conclusions Well survivors of bca want specialists involved in their follow-up care. Compared with virtual followup, in-person follow-up is perceived as more reassuring. Certain survivor characteristics (for example, met supportive care needs) might signal survivor readiness for virtual or non-specialist follow-up. Future work should examine multi-stakeholder perspectives about barriers to and facilitators of shared multimodal follow-up care.

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