scholarly journals Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners

2010 ◽  
Vol 20 (1) ◽  
pp. 88-97 ◽  
Author(s):  
Alex Molassiotis ◽  
Barbara Wilson ◽  
Susan Blair ◽  
Tracy Howe ◽  
James Cavet
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Supportive Care ◽  
Well Being ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Psychological Well Being

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.

Perceived unmet supportive care needs and determinants of quality of life among head and neck cancer survivors: a research protocol

2013 ◽  
Vol 69 (12) ◽  
pp. 2750-2758 ◽  
Author(s):  
Winnie K.W. So ◽  
K.C. Choi ◽  
Carmen W.H. Chan ◽  
Winnie P.Y. Tang ◽  
Alice W.Y. Leung ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Head And Neck ◽  
Neck Cancer ◽  
Supportive Care Needs ◽  
Research Protocol ◽  
Care Needs

Changes of Supportive Care Needs and Quality of Life in Patients with Breast Cancer

2016 ◽  
Vol 16 (4) ◽  
pp. 217 ◽  
Author(s):  
Jin-Hee Park ◽  
Mison Chun ◽  
Yong-Sik Jung ◽  
Young-Mi Jung
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Supportive Care ◽  
Supportive Care Needs ◽  
Care Needs

scholarly journals Unmet supportive care needs and its relation to quality of life among adult acute leukaemia patients in China: a cross-sectional study

2020 ◽  
Author(s):  
Jie Yan ◽  
Ying Wang ◽  
Jingyi Chen ◽  
Chunfeng Wang ◽  
Yingchun Lin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Health Systems ◽  
Acute Leukaemia ◽  
Cross Sectional Study ◽  
Supportive Care Needs ◽  
Sectional Study ◽  
Care Needs ◽  
Cross Sectional

Abstract Background: Patients with acute leukaemia (AL) usually require prolonged periods of hospitalisation. The treatment and clinical symptoms may lead to patients’ supportive care needs (SCNs) not being met and impairs their quality of life (QoL). Studies on QoL and SCNs among AL patients are limited. This study aimed to identify the unmet SCNs and its relation to QoL of adult AL patients in China.Methods: This multicentre cross-sectional study recruited 346 participants to complete a self-developed questionnaire, detailing demographic information and disease-related variables. A 34-item Supportive Care Needs Survey (SCNS-SF34) was used to identify unmet SCNs, and the Functional Assessment of Cancer Therapy-Leukaemia (FACT-Leu) questionnaire measured patients’ QoL.Results: Unmet SCN rates for the 34 items ranged from17.6% to 81.7%. Patients’ needs were high for health systems and information, but low in the sexual domain. The results reveal nine factors associated with the unmet SCNs of adult AL patients, including marital status, original residence, age, education, occupation, other diseases, chemotherapy course, disease course, and treatment stage (p <0.05). The total score of the FACT-Leu negatively correlated with the SCNS-SF34 in the physical/daily living (r = - 0.527, p <0.01), psychological (r = - 0.688, p <0.01), sexual (r = - 0.170, p <0.01), patient care and support (r = - 0.352, p <0.01), and health systems and information (r = - 0.220, p <0.01) domains.Conclusions: Adult AL patients exhibit a high demand for unmet SCNs, especially in the domain of health systems and information. There was a significant association between patients’ unmet SCNs and QoL. Future research should develop tailored interventions to address the unmet SCNs of adult AL patients, to further improve their QoL.

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