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

2019 ◽  
Vol 26 (2) ◽  
Author(s):  
J. Y. Y. Kwan ◽  
J. Croke ◽  
T. Panzarella ◽  
K. Ubhi ◽  
A. Fyles ◽  
...  

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.

2021 ◽  
pp. 107815522110391
Author(s):  
Sujana H Chowdhury ◽  
Bilkis Banu ◽  
Nasrin Akter ◽  
Sarder M Hossain

Background Breast cancer survivor goes through a period of needs in their post-treatment daily life. Relatively few studies have been conducted to understand the unmet needs among breast cancer survivors in Bangladesh. Recognize and measure patterns and predictors of unmet needs of breast cancer patients was the aim of the study. Objective To identify and measure patterns and predictors of unmet needs of breast cancer patients in Bangladesh. Method A cross-sectional study among 138 breast cancer patients; conveniently selected from two public and two private cancer institutes. Face-to-face interview for data collection and medical record review for checklist was done. Unmet needs have been determined by the supportive care needs survey short form 34 scale. Logistic regression analyses were performed to identify the predictors of unmet needs. Results The study indicated the top 10 moderate-to-high needs; among which the top five needs were from the information need domain. Surprisingly, private cancer treatment centers were identified as a significant predictor for unmet needs. Patients from private cancer institutes reported more explanation needs as well as needs with their physical and daily living and sexuality. Furthermore, the type of treatment like patient receiving combine treatment therapy reported more need for help compared to the patient receiving chemotherapy alone. Moreover, housewives reported the low need for patient care and support systems as a result of their reluctant behavior towards their health. Conclusion Individual’s unmet need assessment should be a part of every treatment protocol of breast cancer for a better treatment outcome.


2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 118s-118s
Author(s):  
A. Perez-Fortis ◽  
J. Fleer ◽  
M.J. Schroevers ◽  
P. Alanís López ◽  
J.J. Sánchez Sosa ◽  
...  

Background: In Latin America, where 7.8% of worldwide new cancer cases occur, the implementation of supportive care services for cancer patients within public hospitals is not common practice and it is often a low priority. Identifying the priority care needs of these cancer patients is relevant to improve care provision, especially in Mexico, where breast cancer is highly prevalent and it is among the three leading causes of death in Mexican women. Objective: To investigate the course and predictors of supportive care needs among Mexican breast cancer patients for different cancer treatment trajectories. Methods: In this observational longitudinal study data from 172 patients were considered. Participants were assessed after diagnosis, neoadjuvant treatment, surgery, adjuvant treatment and the first posttreatment follow-up visit. The Supportive Care Needs Survey (SCNS-SF34) was used to assess psychological, health system and information, physical and daily living, patient care and support, sexual, and additional care needs dimensions. Linear mixed models with maximum-likelihood estimation were computed. Results: The supportive care needs course was similar across the different cancer treatment trajectories. Supportive care needs declined significantly from diagnosis to the first posttreatment follow-up visit. The highest care needs over time were those from the health system and information dimension. Depressive symptoms and time since diagnosis were the most consistent predictors of changes in development of supportive care needs of these patients. Conclusion: Health system and information care needs of Mexican breast cancer patients need to be addressed with priority because these needs are the least met. Furthermore, patients with high depressive symptoms at the start of the disease trajectory have greater needs for supportive care throughout the disease trajectory.


2018 ◽  
Vol 4 (Supplement 3) ◽  
pp. 21s-21s
Author(s):  
Navneet Kaur ◽  
Asmita Jain

Purpose The concept of cancer survivorship care as a distinct phase of cancer treatment is relatively new in the developing world. India has a growing population of survivors of breast cancer, but the resources to meet their needs are limited; therefore, to be cost effective, it is important to identify areas that cause the most disruption in their quality of life (QOL). This study was conducted with the following objectives: to estimate the prevalence of various survivorship issues, identify most important issues that limit QOL, and collect information about patients’ perspectives of their supportive care needs to design a plan of follow-up and supportive care. Methods This descriptive, hospital-based, cross-sectional study was conducted in 230 survivors of breast cancer in an academic health care setting in northern India. A checklist of 14 commonly reported survivorship issues as well as questionnaires for QOL assessment—FACT-B and SF-36 —were administered to participants. A semistructured interview was conducted to identify supportive care needs from the patient’s perspective. Main outcome measures were frequencies of survivorship issues and QOL scores among three groups divided on the basis of time elapsed since treatment (< 2 years of follow-up, 2 to 5 years of follow-up, and > 5 years follow-up), stepwise regression analysis to identify issues that have the most significant impact on QOL, and a theme-based analysis of survivors’ interviews to identify supportive care needs. Results 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%). Issues that had a maximum impact on QOL scores were emotional distress (r = −11.375), fatigue (r = −9.27), and premature menopause and its related symptoms (r = −2.085). An analysis of interviews demonstrated maximum unmet needs in the area related to health care information, psychosocial support to cope with breast cancer diagnosis and treatment, relief of physical symptoms, and access to follow-up and supportive care. Conclusion Supportive care services should be designed to address the above-mentioned areas on a priority basis so as to make effective use of limited available resources. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.


Author(s):  
Emma Nicklin ◽  
Lucy Pointon ◽  
Adam Glaser ◽  
Naseem Sarwar ◽  
Michelle Kwok-Williams ◽  
...  

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.


2018 ◽  
Vol 18 (6) ◽  
pp. e1237
Author(s):  
Christina Kozul ◽  
Lesley Stafford ◽  
Chad Bousman ◽  
Allan Park ◽  
Kerry Shanahan ◽  
...  

2018 ◽  
Vol 27 (9) ◽  
pp. 2132-2140 ◽  
Author(s):  
Adriana Pérez-Fortis ◽  
Joke Fleer ◽  
Maya J. Schroevers ◽  
Patricia Alanís López ◽  
Juan José Sánchez Sosa ◽  
...  

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  

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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