Original articlePsychological comorbidity and health-related quality of life and its association with awareness, utilization, and need for psychosocial support in a cancer register-based sample of long-term breast cancer survivors
Introduction
Breast cancer is the most common cancer among women in Germany as well as in developed countries with an estimated annual incidence of 1,152,161 new cases worldwide [1], [2]. The increase of breast cancer incidence with age and the improvement in survival rates through use of enhanced treatment regimes within recent years lead to a growing number of older patients and long-term survivors [2], [3]. The consequences that evoke from this development do not merely include only physical health components such as a variety of late side effects during follow-up care [4], but also a wide range of potentially persistent psychosocial problems and needs [5], [6].
Over the past decades, a considerable amount of research has shown the significant emotional and social impact of breast cancer and its treatment on patients and their families [6]. Previous studies using self-report screening measures have reported distress, anxiety, and depression in, on average, one quarter to one third of breast cancer patients with levels up to 50% following diagnosis and treatment [6], [7], [8], [9], [10], [11], [12]. While high levels of psychosocial distress have been found within the first year postdiagnosis, there is evidence for an improvement in distress, psychosocial well being, and quality of life (QOL) in long-term survivors [6], [11], [13], [14], [15], even though few research has shown no improvement or even a decline in physical and/or mental health (MH), specifically in older women [16], [17]. Risk factors for psychosocial distress and lower levels of QOL include fewer personal resources and maladaptive coping strategies, poorly controlled physical symptoms, lack of social support, psychiatric medical history, poor doctor–patient communication, lower educational level, as well as younger or intermediate age [6], [18], [19]. However, although younger women seem to have higher levels of psychosocial distress and report more unmet needs [20], they were also found to be more aware of psychosocial interventions and more likely to participate in support offers than older women [21].
Research has shown that older women [22], [23], [24] and those with lower socioeconomic status [25] are less likely to receive standard treatment and information about breast cancer care. Whether this might also be the case for psychosocial care has not been widely investigated so far. A study in breast cancer patients aged from 55 to 97 years [26] found that older women do highly value the information about breast cancer care provided by their breast cancer physician. However, while younger women did also receive more written information from other sources such as primary care physicians, family, and friends, specifically, women aged 57 years or older were found to get less written information from other sources. Furthermore, women who rated their ability to communicate with their physicians less highly were found to have lower levels of emotional health, suggesting that, in particular, patients with substantial need for support are less likely to actively seek help. However, although this study focused on oncological care information, it can be assumed that information about psychosocial care and support might also be less given to older women.
Knowledge about psychosocial support offers is an important requirement for their use. Eakin and Strycker [27] led a study in 2001 on the knowledge about and participation in psychosocial support offers among patients with breast, colon, and prostate cancer. The findings indicated that only a percentage of patients were informed of existing support offers, and that knowledge of these offers was not consequently accompanied by participation in them. The authors were able to show that, in addition to a higher degree of education, a referral by the physician played an important role for the utilization of psychosocial support offers.
While many psychosocial and QOL studies have been conducted with breast cancer patients, few studies have concentrated specifically on the association between psychological comorbidity and the awareness and utilization of psychosocial support offers in long-term survivors. Hodgkinson et al. [28] found a high percentage (86%) of reported unmet needs in breast cancer survivors and a significantly higher percentage in those patients with high levels of anxiety or depression. However, research including older women has been relatively rare so far.
The purpose of this cross-sectional cancer registry-based study is to provide information about the prevalence of anxiety, depression, and posttraumatic stress disorder (PTSD), as well as about health-related QOL in long-term breast cancer survivors. Group comparisons with population-based normative values for anxiety, depression, and QOL have been undertaken. We furthermore investigate perceived knowledge, utilization, and subjective need for psychosocial support. The study examines predictors of psychological comorbidity as well as predictors of psychosocial support needs, taking into account specifically the time since breast cancer diagnosis, age, and educational level. We hypothesize that psychological comorbidity and awareness of and need for psychosocial support are significantly associated with age, educational level, time since diagnosis, and disease stage.
Section snippets
Study design and participants
Patients older than 18 years with a clinical diagnosis of breast cancer confirmed between 6.5 years and 18 months prior to our survey were recruited through the population-based Cancer Registry of the Federal German state of Hamburg. The period of 18 months postdiagnosis was the earliest feasible time due to the cancer registration procedure. The Hamburg Cancer Registry has a case completeness for breast cancer higher than 95% [29]; however, registration and participation in research projects
Psychological comorbidity and QOL
Eighteen percent of the total samples were classified as having moderate anxiety and 20% as having high levels of anxiety. Eleven percent of the patients were classified as having moderate depression and further 11% as having high levels of depression. Cancer-related PTSD was observed in 12% of the patients. No group differences were found in the frequency of anxiety, depression, as well as PTSD between patients at different months postdiagnosis. Furthermore, ANOVA for QOL between the different
Discussion
This cancer registry-based study examined the prevalence of anxiety, depression, and PTSD as well as health-related QOL in long-term breast cancer survivors. The second objective was to investigate perceived knowledge, utilization, and subjective need for professional psychosocial support offers.
The term long-term survivor has been used differently within the current literature [6]. According to the National Cancer Institute in the United States [3], “an individual is considered a cancer
Acknowledgments
This research has been supported by grants from the Cora Lobscheid Foundation and the Astrid-Haugstrup-Sörensen-Memorial Foundation within the Donors' Association for the Promotion of Sciences and Humanities in Essen, Nordrhein-Westfalen, Germany (grant numbers T 129-12.171 and T 100-13.496). We thank Dr. Stefan Hentschel and Norbert Burkhard at the Hamburg Cancer Registry for their valuable support to this work.
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