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.

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.

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 Cross-cultural adaptation and validation of the cancer survivors’ unmet needs measure among gynecological cancer patients in Indonesia

2020 ◽  
Vol 26 (2) ◽  
pp. 23-29
Author(s):  
Haryani Haryani ◽  
Yati Afiyanti ◽  
Besral Besral ◽  
Dewi Gayatri ◽  
Kemala Wahidi ◽  
...  
Keyword(s):  
Supportive Care ◽  
Cancer Survivors ◽  
Cancer Patients ◽  
Cultural Adaptation ◽  
Unmet Needs ◽  
Gynecological Cancer ◽  
Cross Cultural ◽  
Supportive Care Needs ◽  
Care Needs

Background: The number of gynecological cancer survivors in Indonesia is growing, yet little is recognized about their supportive care needs due to a lack of validated assessment to measure them. This study aimed to culturally adapt the Cancer survivors? unmet needs into Indonesian language and to test its validity and reliability for Indonesian gynecological cancer patients. Methods: We performed the translation and adaptation of the Cancer survivors? unmet needs based on Beaton?s cross-cultural adaptation process of self-report measure. We then evaluated the psychometric properties of Cancer survivors? unmet needs -Indonesian with 298 participants from three hospitals across Indonesia. Results: Five factors were extracted from Exploratory Factor Analysis with factor loading >0.4. Cancer survivors? unmet needs - Indonesian had negative correlations with The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30, indicating that the higher score of unmet needs resulted in the lower score of quality of life. The Cronbach?s ? coefficient for the Cancer survivors? unmet needs - Indonesian ranged from 0.75-0.95. Conclusions: The Cancer survivors? unmet needs - Indonesian version offers a valid and reliable scale for assessing supportive care needs among Indonesian gynecological cancer patients. The Cancer survivors? unmet needs-Indonesian could help clinicians to assess supportive care needs among Indonesian gynecological cancer patients. The low-resource countries such as Indonesia could use the evidence from the Cancer survivors? unmet needs assessment to develop the supportive care service in the clinical settings.

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

scholarly journals Pattern and Predictors of Unmet Supportive Care Needs in Cancer Patients

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 117s-117s
Author(s):  
P. Okediji ◽  
O. Salako ◽  
O. Fatiregun
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Cancer Patients ◽  
Cancer Care ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Emotional Instability ◽  
Care Needs ◽  
Wide Range

Background: The incidence of cancers is increasing, and this is associated with an increase in the burden of the disease. Patients with cancer have to deal with reduced physical functioning, emotional instability, difficulty in concentrating, and an overall diminished feeling of well-being. This creates deficits that have not been well catered for by traditional cancer care, leading to an overall dissatisfaction with care, and a reduced quality of life. Aim: This review aims at assessing the pattern of unmet needs in cancer patients and to provide information as to the factors that influence the perception of unmet needs. Methods: Studies directly focused on unmet needs in cancer patients were retrieved from MEDLINE, PubMed, PsychINFO, Embase, and Google Scholar; from the earliest records until 2016. Unmet needs in cancer patients have been measured with a wide variety of tools, with the Supportive Care Needs Survey (SCNS) being the most commonly used as a result of its strong psychometric properties, ease of use, responsiveness, and its coverage of all the domains of unmet needs. Results: The most common unmet needs were in the domains of health system and information, psychological, and physical and daily living. These needs were influenced by sociodemographic factors such as age, sex, marital status, income level; and clinical factors such as location of cancer, stage of disease, and tumor size. Conclusion: It is clear that cancer patients experience a wide range of unmet supportive needs, for which efforts need to be desperately made to improve the supportive care services for these patients and their quality of life. While it may not be possible to meet all the needs of every cancer patient, routine and regular monitoring of unmet needs using the appropriate tools is crucial so that cancer care and other health professionals can develop, implement, and streamline specific aspects of cancer care to strategically meet the specific needs of their patients.

Head and neck cancer patients want us to support them psychologically in the posttreatment period: Survey results

2013 ◽  
Vol 12 (6) ◽  
pp. 481-493 ◽  
Author(s):  
Melissa Henry ◽  
Laura-Anne Habib ◽  
Matthew Morrison ◽  
Ji Wei Yang ◽  
Xuejiao Joanna Li ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Supportive Care ◽  
Head And Neck ◽  
Cancer Patients ◽  
Neck Cancer ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs

AbstractObjectives:No study systematically has investigated the supportive care needs of general head and neck cancer patients using validated measures. These needs include physical and daily living needs, health system and information needs, patient care and support needs, psychological needs, and sexuality needs. Identifying the unmet needs of head and neck cancer patients is a necessary first step to improving the care we provide to patients seen in our head and neck oncology clinics. It is recommended as the first step in intervention development in the Pan-Canadian Clinical Practice Guideline of the Canadian Partnership Against Cancer (see Howell, 2009). This study aimed to identify: (1) met and unmet supportive care needs of head and neck cancer patients, and (2) variability in needs according to demographics, disease variables, level of distress, and quality-of-life domains.Methods:Participants were recruited from the otolaryngology–head and neck surgery clinics of two university teaching hospitals. Self-administered questionnaires included sociodemographic and medical questions, as well as validated measures such as the Supportive Care Needs Survey–Short Form (SCNS-SF34), the Hospital Anxiety and Depression Scale (HADS), and the Functional Assessment of Cancer Therapy–General (FACT-G) and Head and Neck Module (FACT-H&N) (quality of life measures).Results:One hundred and twenty-seven patients participated in the survey. 68% of them experienced unmet needs, and 25% revealed a clinically significant distress level on the HADS. The highest unmet needs were psychological (7 of top 10 needs). A multiple linear regression indicated a higher level of overall unmet needs when patients were divorced, had a high level of anxiety (HADS subscale), were in poor physical condition, or had a diminished emotional quality of life (FACT-G subscales).Significance of results:The results of this study highlight the overwhelming presence of unmet psychological needs in head and neck cancer patients and underline the importance of implementing interventions to address these areas perceived by patients as important. In line with hospital resource allocation and cost-effectiveness, one may also contemplate screening patients for high levels of anxiety, as well as target patients who are divorced and present low levels of physical well-being, as these patients may have more overall needs to be met.

scholarly journals SUPPORTIVE CARE NEEDS PADA KELUARGA PASIEN STROKE DI KLINIK SYARAF BANJARMASIN, INDONESIA

2017 ◽  
Vol 5 (2) ◽  
pp. 107
Author(s):  
Agianto Agianto ◽  
Herry Setiawan
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Long Term Care ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Term Care ◽  
Care And Support ◽  
Psychosocial Domain

ABSTRAKKematian dan morbiditas banyak disebabkan oleh stroke. Di ASEAN, stroke penyebab utama kematian keempat dan Indonesia nomor satu. Kalimantan Selatan merupakan empat besar untuk prevalensi di Indonesia. Pasien stroke memerlukan perawatan jangka panjang di rumah dan kualitas hidup mereka baik jika mendapat perawatan dan dukungan yang tepat dari caregiver. Sehingga kualitas hidup caregiver juga perlu diperhatikan. Tujuan penelitian ini untuk mengetahui supportive care needs pada keluarga pasien stroke saat merawat di rumah. Penelitian deskriptif digunakan di klinik syaraf, dengan 112 responden dan menggunakan kuesioner. Analisa data adalah distribusi frekuensi. Hasil penelitian ini supportive care needs pada caregivers di masyarakat berada pada tingkat sedang (100%, n = 112); Dengan domain emosional (27.11 ± 8,47), domain psikososial (26,84 ± 6,36), domain informasi (23,74 ± 4,20), domain praktek (16,3 ± 4,24), domain spiritual (6,43 ± 1,30), dan domain fisik (3,06 ± 1,17). Perawat di komunitas perlu memperbaiki kualitas dan sistem perawatan kesehatan untuk membantu caregiver dalam merawat pasien dengan perawatan jangka panjang.Kata-kata kunci: keluarga pasien stroke; komunitas; supportive care needs.ABSTRACTMortality and morbidity were caused by stroke. In ASEAN, stroke is the fourth leading and Indonesia is number one. South Kalimantan is the top four for high prevalence in Indonesia. Stroke patients require long-term care at their home and their quality of life will be good if they get the appropriate long-term care and support from caregivers. Quality of life of caregivers also need to be considered. The purpose of study was to determine the supportive care needs of stroke caregivers when take care at home. A descriptive study used at neurological clinic, with 112 caregivers, and using questionnaire. Data analysis used frequency distribution. The results showed that the supportive care needs among stroke caregivers in the community is at a moderate level (100%, n = 112); with emotional domain (27.11 ± 8.47), psychosocial domain (26.84 ± 6.36), informational domain (23.74 ± 4.20), practice domain (16.3 ± 4.24), spiritual domain (6.43 ± 1.30), and physical domain (3.06 ± 1.17). Nurses in the community need to improve the quality and the health care system to help stroke caregivers in taking care for long term. Keywords: community; stroke caregiver; supportive care needs

scholarly journals Primary Health and Supportive Care Needs of Long-Term Cancer Survivors: A Questionnaire Survey

2011 ◽  
Vol 29 (15) ◽  
pp. 2091-2098 ◽  
Author(s):  
Siân E. Harrison ◽  
Eila K. Watson ◽  
Alison M. Ward ◽  
Nada F. Khan ◽  
Daniel Turner ◽  
...  
Keyword(s):  
Health Status ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Psychological Morbidity ◽  
Care Needs ◽  
The United Kingdom ◽  
Long Term Survivors

Purpose There are 1.2 million long-term cancer survivors in the United Kingdom. Existing research on the health and supportive care needs of these survivors is sparse and inconclusive. This study investigated health status, psychological morbidity, and supportive care needs in long-term cancer survivors in the United Kingdom. Methods Five to 16 years after diagnosis, 1,275 eligible survivors of breast, colorectal, and prostate cancers were approached to participate in a questionnaire survey. The questionnaire explored health status (European Quality of Life–5 Dimensions), psychological morbidity (Hospital Anxiety and Depression Scale), and supportive care needs (Cancer Survivors' Unmet Needs Measure). Data were analyzed by type of cancer and time since diagnosis. Logistic regression was used to identify predictors of unmet supportive care needs. Results The response rate was 51.7% (659 survivors). Overall health status and levels of psychological morbidity were consistent with population norms. At least one unmet supportive care need was reported by 47.4% of survivors, but overall numbers of unmet needs were low (mean, 2.8; standard deviation, 4.8). The most frequently endorsed unmet need was for help to manage concerns about cancer recurrence. Trait anxiety (P < .001), nondischarged status (P < .01), dissatisfaction with discharge (P < .01), and receipt of hormonal therapy (P < .01) were predictive of unmet supportive care needs. Conclusion The findings suggest a majority of long-term breast, colorectal, and prostate cancer survivors who have no signs of recurrence report good health and do not have psychological morbidity or large numbers of unmet supportive care needs. A minority of long-term survivors may benefit from ongoing support. The identification and support of those long-term survivors with ongoing needs is a key challenge for health care professionals.

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