The nature and timing of distress among post-treatment haematological cancer survivors

2018 ◽  
Vol 28 (1) ◽  
pp. e12951 ◽  
Author(s):  
Deborah Raphael ◽  
Rosemary Frey ◽  
Merryn Gott
Keyword(s):  
Cancer Survivors ◽  
Post Treatment ◽  
Haematological Cancer ◽  
Haematological Cancer Survivors

scholarly journals Use of the supportive care framework to explore haematological cancer survivors’ unmet needs: a qualitative study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne Herrmann ◽  
Elise Mansfield ◽  
Flora Tzelepis ◽  
Marita Lynagh ◽  
Alix Hall
Keyword(s):  
Supportive Care ◽  
Cancer Survivors ◽  
Unmet Needs ◽  
Qualitative Content Analysis ◽  
Post Treatment ◽  
Haematological Cancer ◽  
Care Plans ◽  
Transport Services ◽  
The Future ◽  
Haematological Cancer Survivors

Abstract Background Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. Methods Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. Results Participants had a mean age of 57 years (SD 13). Most were male (n = 10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. Conclusions To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

Psychosocial Factors and Impact Of Cancer In British Long-Term Haematological Cancer Survivors

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 2943-2943
Author(s):  
Ania Korszun ◽  
Shah-Jalal Sarker ◽  
Kashfia Chowdhury ◽  
Charlotte Clark ◽  
Paul Greaves ◽  
...  
Keyword(s):  
Social Support ◽  
Psychological Distress ◽  
Cancer Survivors ◽  
Psychosocial Factors ◽  
Positive Impact ◽  
Medical Comorbidity ◽  
Haematological Cancer ◽  
High Level ◽  
Haematological Cancer Survivors

Abstract Background Long-term cancer survivors can experience a variety of adverse physical late effects of cancer therapy. However, psychological, e.g. depression and anxiety, and social problems can also have profoundly adverse effects on patients’ quality of life (QOL) that may not be adequately addressed in the management of long-term survivors. This study examines the effect and interaction of several disease-related, social and psychological factors on QOL in 718 British long-term haematological cancer survivors (5-40 years), who had all been treated at a single centre over 50 years. Objectives (1) to measure the prevalence of psychological distress (depression, anxiety), functioning, and fatigue in this survivor group compared to rates in the UK population and other survivor groups, (2) to investigate the effect of cancer and cancer treatment on QOL and psychological and social functioning, (3) to identify psychosocial factors associated with poorer QOL outcome. Patients and Methods Ethical approval obtained from the National Research Ethics Service Ref: 11/NE/0095 All patients, aged ≥18 years at time of entry into study, with a confirmed diagnosis of haematological malignancy and alive ≥5 years since initial diagnosis, and who had received treatment at St. Bartholomew’s Hospital, London (n=1,279) were sent a questionnaire comprising questions on physical health and validated psychosocial, functional and QOL scales, including negative and positive impact of cancer (IOC). Responses were received from 718 (response rate = 56%) patients (280 Hodgkin’s Lymphoma (HL), 326 Non-Hodgkin’s lymphoma (NHL) [109 Diffuse Large B- Lymphoma (DLBCL), 128 Follicular Lymphoma (FL), 89 other NHL (ONHL)], and 112 Acute Leukaemia (AL)). Statistical Analysis QOL measures were compared to normal population and other cancer survivor groups. Two separate hierarchical regression analyses were conducted to examine the combined association of the disease type, socio-demographics, psychological and other factors, including cancer recurrence, on negative and positive IOC scores respectively. Results Survivors had poorer QOL than the general population and 15% had levels of psychological distress indicative of a clinical depressive disorder, 18% high levels of fatigue and 10% moderate to severe impairment in functioning; all these groups showed poorer QOL. There were no statistically significant differences in psychological distress (P=0.76), fatigue levels (P=0.23) or levels of functioning (P=0.74) across different cancer diagnostic groups. Higher Negative IOC scores were significantly associated (P<0.001) with the presence of medical comorbidity, depression, low or medium level of social support, a high level of fatigue and functional impairment. Greater age at diagnosis and number of years since diagnosis were significantly (P<0.001) associated with less negative IOC. Higher positive impact scores were associated with an AL diagnosis (P=0.01) ; lower positive IOC scores were associated with white ethnicity (P<0.001), a high level of education (P=0.003), not having a partner (P=0.01), depression(P=0.04), and a low level of social support (P=0.01). Conclusion The impact of cancer on survivors’ lives is influenced by a variety of factors. By using a simple means of screening for medical comorbidity, depression and fatigue the group that needs most support could be identified early, allowing appropriate interventions to improve QOL-related measures and promote well-being by addressing both negative and positive impact of cancer. Acknowledgments We are grateful for the support of Macmillan Cancer Support Greg Woolf Foundation Cancer Research UK Barts and The London NHS Trust Disclosures: No relevant conflicts of interest to declare.

scholarly journals Negative illness perceptions are related to more fatigue among haematological cancer survivors: a PROFILES study

2020 ◽  
Vol 59 (8) ◽  
pp. 959-966
Author(s):  
Dounya Schoormans ◽  
Mandy Jansen ◽  
Floortje Mols ◽  
Simone Oerlemans
Keyword(s):  
Cancer Survivors ◽  
Illness Perceptions ◽  
Haematological Cancer ◽  
Haematological Cancer Survivors

Dyadic interdependence of psychosocial outcomes among haematological cancer survivors and their support persons

2017 ◽  
Vol 25 (11) ◽  
pp. 3339-3346 ◽  
Author(s):  
Christine Paul ◽  
Alix Hall ◽  
Christopher Oldmeadow ◽  
Marita Lynagh ◽  
Sharon Campbell ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Psychosocial Outcomes ◽  
Haematological Cancer ◽  
Haematological Cancer Survivors

scholarly journals How can we help haematological cancer survivors cope with the changes they experience as a result of their cancer?

2016 ◽  
Vol 95 (12) ◽  
pp. 2065-2076
Author(s):  
Alix Hall ◽  
Marita Lynagh ◽  
Flora Tzelepis ◽  
Chris Paul ◽  
Jamie Bryant
Keyword(s):  
Cancer Survivors ◽  
Haematological Cancer ◽  
Haematological Cancer Survivors
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