The prevalence of unmet needs in 625 women living beyond a diagnosis of early breast cancer

Abstract

Background:There are over half a million women with a previous breast cancer diagnosis living in the UK. It is important to establish their level of unmet physical and psychosocial needs, as many are not routinely seen for follow-up under current models of care.Methods:We conducted a retrospective analysis of early breast cancer survivors entering an Open Access Follow-Up (OAFU) programme in 2015. Unmet needs were assessed using the Holistic Needs Assessment (HNA) or extracted directly from the electronic patient record (EPR), when the HNA had not been completed.Results:Six hundred and twenty-five patients were eligible. Sixty-one per cent of the survivors had at least one unmet need and 18% had ⩾5 needs. Consistently higher levels of unmet needs were identified using the formal HNA checklist as opposed to extraction from EPR (P<0.001). Physical and emotional needs were the most frequently reported (55 and 24% respectively). Patients receiving endocrine therapy and those who had received chemotherapy were more likely to report unmet needs (both P<0.001).Conclusions:Unmet physical and emotional needs are common in breast cancer survivors. It is vital that the services are available for these patients as they transition from hospital-based follow-up to patient-led self-management models of care.

Patient‐reported outcome measures among breast cancer survivors: A cross‐sectional comparison between Malaysia and high‐income countries

“…4 Cross-sectional studies in predominantly high-income countries (HICs) have shown that emotional and psychological well-being are common themes among breast cancer survivors. [5][6][7][8][9] These studies also found that the main needs after diagnosis or treatment are management of long-term side effects as well as physical, cognitive, and sexual functioning needs, 5,6,10 while longitudinal studies highlight that fear and feelings of uncertainty evolve over time after diagnosis. [11][12][13][14] A limited number of studies on patient outcomes among minority groups in developed countries indicate that ethnic and regional differences exist.…”

“…Patient reported outcomes (PROs) refers to any response that is collected directly from patients using various methods and instruments . Cross‐sectional studies in predominantly high‐income countries (HICs) have shown that emotional and psychological well‐being are common themes among breast cancer survivors . These studies also found that the main needs after diagnosis or treatment are management of long‐term side effects as well as physical, cognitive, and sexual functioning needs, while longitudinal studies highlight that fear and feelings of uncertainty evolve over time after diagnosis …”

Symptom clusters and quality of life in breast cancer survivors after cancer treatment in a tertiary hospital in Korea

“…The most frequent symptoms in breast cancer patients are fatigue, anxiety, depression, pain and sleep disturbance (Denieffe, Cowman, & Gooney, ), which tend to occur even after treatment and have a negative effect on QOL (Roiland & Heidrich, ). It is reported that breast cancer survivors continuously experience various symptoms after acute treatments, such as fatigue, pain, lymphedema, menopausal symptoms and sleep disturbance (Capelan et al, ; Fabi et al, ; Moon, Hunter, Moss‐Morris, & Hughes, ; Palesh et al, ; Reichart, ). Furthermore, breast cancer survivors report experiences of psychological distress related to worrying about recurrence, difficulty in resumption of work and family relationships, and concern about social roles (Andreu et al, ).…”

“…cancer survivors continuously experience various symptoms after acute treatments, such as fatigue, pain, lymphedema, menopausal symptoms and sleep disturbance (Capelan et al, 2017;Fabi et al, 2017;Moon, Hunter, Moss-Morris, & Hughes, 2017;Palesh et al, 2013;Reichart, 2017). Furthermore, breast cancer survivors report experiences of psychological distress related to worrying about recurrence, difficulty in resumption of work and family relationships, and concern about social roles (Andreu et al, 2012).…”

Web-Based Patient-Reported Outcomes Using the International Consortium for Health Outcome Measurement Dataset in a Major German University Hospital: Observational Study (Preprint)

“…Breast cancer specific mortality in Europe was reduced from 17.9 per one hundred thousand women in 2002 to 15.2 women in 2012 [4]. However, survival gains are often associated with a loss in physical functioning, increased morbidity and new challenges regarding the emotional, social and financial aspects of life [5,6,7,8]. Therefore, this increase in life expectancy for cancer patients must lead to an increased scrutiny regarding the long-term side effects of new and existing cancer treatments [9,10].…”