Colorectal cancer survivors’ quality of life: a qualitative study of unmet need

2020 ◽  
pp. bmjspcare-2020-002190
Author(s):  
Amanda Drury ◽  
Sheila Payne ◽  
Anne-Marie Brady
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Unmet Need ◽  
Safety Net ◽  
The Impact

ObjectiveCancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.MethodsSemistructured interviews were conducted with 22 CRC survivors receiving follow-up care between 1 and 5 years post diagnosis. Interviews were recorded, transcribed and analysed thematically.ResultsFive themes described the impact of healthcare experiences on CRC survivors’ QoL. While cancer survivors spoke positively of their relationships with healthcare professionals, many experienced a range of unmet information and supportive care needs. Participants described a range of positive and negative experiences, as power dynamics and navigation of healthcare systems had implications for their QoL. Where negative healthcare events aligned, survivors’ autonomy, dignity and confidence were undermined, and survivorship issues could be inadequately addressed. To address persistent unmet needs, survivors developed a safety net(work) of supports to bridge the gap of unmet needs in healthcare with varying outcomes.ConclusionsCancer survivors’ experience of follow-up and healthcare can positively or negatively affect their QoL. Preparation for cancer survivorship must be incorporated into the acute phase of diagnosis and treatment and interlinked with clear pathways of survivorship care and accessible supportive care, which support survivors to be equal partners in their healthcare. Understanding cancer survivors’ knowledge, expertise and mastery of their condition is essential to ensure delivery of person-centred supportive care that adequately addresses the survivor’s unmet needs.

scholarly journals The course of peripheral neuropathy and its association with health-related quality of life among colorectal cancer patients

2020 ◽  
Author(s):  
Cynthia S. Bonhof ◽  
Lonneke V. van de Poll-Franse ◽  
Dareczka K. Wasowicz ◽  
Laurens V. Beerepoot ◽  
Gerard Vreugdenhil ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Peripheral Neuropathy ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Eortc Qlq ◽  
The Impact

Abstract Purpose To gain more insight into the course of chemotherapy-induced peripheral neuropathy (CIPN) and its impact on health-related quality of life (HRQoL) in a population-based sample of colorectal cancer (CRC) patients up to 2 years after diagnosis. Methods All newly diagnosed CRC patients from four hospitals in the Netherlands were eligible for participation in an ongoing prospective cohort study. Patients (n = 340) completed questions on CIPN (EORTC QLQ-CIPN20) and HRQoL (EORTC QLQ-C30) before initial treatment (baseline) and 1 and 2 years after diagnosis. Results Among chemotherapy-treated patients (n = 105), a high sensory peripheral neuropathy (SPN) level was reported by 57% of patients at 1 year, and 47% at 2-year follow-up, whereas a high motor peripheral neuropathy (MPN) level was reported by 47% and 28%, at years 1 and 2, respectively. Linear mixed model analyses showed that SPN and MPN symptoms significantly increased from baseline to 1-year follow-up and did not return to baseline level after 2 years. Patients with a high SPN or MPN level reported a worse global quality of life and a worse physical, role, emotional, cognitive, and social functioning compared with those with a low SPN or MPN level. Conclusions Future studies should focus on understanding the mechanisms underlying CIPN so targeted interventions can be developed to reduce the impact of CIPN on patient’s lives. Implications for cancer survivors Patients need to be informed of both CIPN and the impact on HRQoL.

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 Survivourship Issues As Determinants of Quality of Life After Breast Cancer Treatment: Report From a Limited Resource Setting

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 100s-100s
Author(s):  
N. Kaur ◽  
A. Gupta ◽  
A.K. Sharma
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Emotional Distress ◽  
Joint Pain ◽  
Breast Cancer Survivors ◽  
Breast Cancer Treatment

Background: Cancer survivorship is an unremitting struggle for breast cancer patients, as the consequence of complex treatment processes and its multitude of residual and late emerging side effects, have a significant impact on their quality of life (QOL). Unique issues of survivorship include those related to physical, psychological, social, and spiritual well-being of women. Amid a growing population of breast cancer survivors (BCs) worldwide, supportive care research is assuming greater importance in breast cancer care. Focus of survivorship research is to identify issues impacting QOL of the cancer survivors so that supportive care services can be tailored to their specific needs. Role of individual survivor's issues have been widely reported but a comprehensive picture is lacking. Aim: This study was conducted with the aim to identify important survivorship issues adversely affecting QOL of women after breast cancer treatment. Main objectives were to (1) estimate prevalence of various survivorship issues (2) assess QOL of survivors by using FACT-B and SF-36 questionnaires (3) study impact of time elapsed since treatment on survivorship issues and QOL scores (4) identify most important issues from the perspective of impact on QOL. Methods: This descriptive, hospital based, cross sectional study was conducted in 230 breast cancer survivors and a group of 112 healthy age-matched-controls, in an academic healthcare setting in northern India. A checklist of 14 commonly reported survivorship issues, and questionnaires for QOL assessment were administered to participants. Main outcome measures were (1) frequencies of survivorship issues and QOL scores among three groups divided on the basis of time elapsed since treatment (< 2 year follow-up, 2-5 year follow-up and > 5 year follow-up) (2) association of survivorship issues with QOL scores (3) stepwise regression analysis to identify issues with most significant impact on QOL of survivors. Results: Breast cancer survivors showed an improvement in their QOL over time which was sustained in long term survivors. However their quality of life remains poorer, compared with healthy women, irrespective of the duration of follow-up. The most prevalent survivorship issues were fatigue (60%), restriction of shoulder movement (59.6%), body and joint pain (63.5%), chemotherapy induced cessation of menstruation (73.3%) and loss of sexual desire (60%). However the issues which had maximum adverse effect on QOL scores were emotional distress, fatigue, postmastectomy chronic pain, cessation of menstruation, body and joint pain, vaginal dryness and sleep disturbances. Conclusion: Thus in this study, emotional distress and cancer related fatigue were found to be the chief determinants of poor QOL. Further premature menopause, with its attendant systemic symptoms, vulvo-vaginal atrophy and sexual dysfunction emerged as a key contributor to poor QOL in BCs.

scholarly journals Erratum to: Psychological distress, quality of life, symptoms and unmet needs of colorectal cancer survivors near the end of treatment

2015 ◽  
Vol 9 (3) ◽  
pp. 471-471
Author(s):  
Lahiru Russell ◽  
Karla Gough ◽  
Allison Drosdowsky ◽  
Penelope Schofield ◽  
Sanchia Aranda ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Psychological Distress ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Colorectal Cancer Survivors ◽  
End Of Treatment

Psychological distress, quality of life, symptoms and unmet needs of colorectal cancer survivors near the end of treatment

2015 ◽  
Vol 9 (3) ◽  
pp. 462-470 ◽  
Author(s):  
Lahiru Russell ◽  
Karla Gough ◽  
Allison Drosdowsky ◽  
Penelope Schofield ◽  
Sanchia Aranda ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Psychological Distress ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Colorectal Cancer Survivors ◽  
End Of Treatment

scholarly journals Evaluating process and effectiveness of a low-intensity CBT intervention for women with gynaecological cancer (the EPELIT Trial)

2021 ◽  
Vol 3 ◽  
pp. 12
Author(s):  
Nicholas J. Hulbert-Williams ◽  
Lee Hulbert-Williams ◽  
Ryan James Flynn ◽  
Rosina Pendrous ◽  
Carey MacDonald-Smith ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Psychological Intervention ◽  
Intervention Group ◽  
Control Group ◽  
Intervention Programme ◽  
Intervention Delivery

Background: Improving survival from gynaecological cancers is creating an increasing clinical challenge for long-term distress management. Psychologist-led interventions for cancer survivors can be beneficial, but are often costly. The rise of the Psychological Wellbeing Practitioner (PWP) workforce in the UK might offer a cheaper, but equally effective, intervention delivery method that is more sustainable and accessible. We aimed to test the effectiveness of a PWP co-facilitated intervention for reducing depression and anxiety, quality of life and unmet needs. Methods: We planned this trial using a pragmatic, non-randomised controlled design, recruiting a comparator sample from a second clinical site. The intervention was delivered over six-weekly sessions; data were collected from participants at baseline, weekly during the intervention, and at one-week and three-month follow-up. Logistical challenges meant that we only recruited 8 participants to the intervention group, and 26 participants to the control group. Results: We did not find significant, between-group differences for depression, quality of life or unmet needs, though some differences at follow-up were found for anxiety (p<.001). Analysis of potential intervention mediator processes indicated the potential importance of self-management self-efficacy. Low uptake into the psychological intervention raises questions about (a) patient-driven needs for group-based support, and (b) the sustainability of this intervention programme. Conclusions: This study failed to recruit to target; the under-powered analysis likely explains the lack of significant effects reported, though some trends in the data are of interest. Retention in the intervention group, and low attrition in the control group indicate acceptability of the intervention content and trial design; however a small baseline population rendered this trial infeasible in its current design. Further work is required to answer our research questions, but also, importantly, to address low uptake for psychological interventions in this group of cancer survivors. Trial registration: ClinicalTrials.gov, NCT03553784 (registered 14 June 2018).

scholarly journals The Impact of Body Mass Index and Waist Circumference on Health-related Quality of Life Among Colorectal Cancer Survivors: Results from the PROFILES Registry

2017 ◽  
Vol 69 (8) ◽  
pp. 1177-1184 ◽  
Author(s):  
Pauline A. J. Vissers ◽  
Renata B. Martucci ◽  
Floortje Mols ◽  
Martijn J. L. Bours ◽  
Renate M. Winkels ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Body Mass Index ◽  
Waist Circumference ◽  
Cancer Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact
Sign in / Sign up

Export Citation Format

Share Document