It is evident in the current literature that cancer and its treatment render a wide range of physical and psychological morbidities. Many of these adverse effects emerge or amplify during cancer treatment and persist in a chronic, long-term manner after treatment terminates. A recent population-based study showed that 92% of survivors with heterogeneous cancer types experienced residual symptoms 1 year after cancer diagnosis, even when free from cancer treatment.13 High symptom severity was reported by approximately one-third (31%) of these survivors, and their symptom severities were similar to those undergoing cancer treatment.13 Another study showed that the symptom scores of individuals more than 5 years after breast cancer treatment did not differ from the scores of those receiving active cancer treatment.14
Survivors also continued to experience clusters of symptoms after treatment termination.15 Four different symptom clusters were identified among the studies. The clusters consisted of various combinations of fatigue, depression, anxiety, pain, sleep disturbance, and cognitive dysfunction.15–18 The differences in clusters may be due to predetermined symptoms examined or analytic strategies used to describe the clusters. The variation may also be associated with types of cancer and the stages of survivorship. For example, there was a significant presence of the symptom cluster of pain, fatigue, sleep disturbance, depression, and distress among survivors of lung, colorectal, or lymphoma cancers during the first 16-month posttreatment period.15 In another study, concurrent symptoms of pain, fatigue, and sleep disturbance were experienced among a majority (61%) of long-term breast cancer survivors greater than 5 years from diagnosis.16 Although there have been considerable advances in documenting symptom clusters in patients undergoing major cancer treatments, more research is needed to determine symptom clustering in extended and long-term survivorship.
Fatigue was the most frequently reported symptom among the studies. The prevalence of fatigue in cancer survivors ranged from 9% to 100%.16,17,19–27 The variation can be accounted for by a wide range of periods studied, a variety of tools selected to measure fatigue, or inconsistent criterion used to determine the presence of fatigue. Although fatigue during extended or long-term survival is often assessed by well-established and psychometrically sound measures (Table 1), 2 studies19,24 used a case-definition approach by incorporating the clinical criteria of Neurasthenia and Related Disorders (SCIN)28 or the definition of cancer-related fatigue by the International Classification of Diseases, 10th Revision (ICD-10).29–32 Compared with the findings of other fatigue measurements, these diagnostic criteria tend to yield lower occurrence and therefore provide a more conservative estimate of fatigue prevalence. For example, when the ICD-10 cancer-related fatigue criteria were followed, fatigue prevalence rates among breast cancer survivors at 6 and 42 months after treatment were 9% and 13%, respectively.19 A similar prevalence of 14% was found among breast cancer survivors who met SCIN criterion 12 months after treatment completion.24 Other reports using established fatigue measures on survivors free from treatment but with a mixture of elapsed time since diagnosis have varied, from a symptom prevalence of 27.8% to 82.6%.16,20–22,26,27 Although the time-specific conclusion is difficult to make, it is evident that fatigue persists years after treatment completion. When using the time frame of a minimum of 5 years following either cancer diagnosis or treatment,33 an estimated 21% to 34.5% of long-term survivors experienced substantial fatigue.24,26
Fatigue is not only the most prevalent but also one of the most severe or bothersome symptoms during extended and long-term survival.16,20,25 Compared with healthy counterparts without history of cancer, survivors reported significantly greater fatigue.17,34 The trajectory of fatigue may depend on the time that has elapsed since treatment completion. In a cohort study of women with breast cancer, fatigue prevalence of 42% was highest at the end of treatment. The rate slowly declined over time until it reached 14% at 12 months post treatment.24 Similar patterns in fatigue severity have been observed. In a study of posttreatment survivors, fatigue severity was highest during the first 2 to 6 weeks after chemotherapy completion. The severity fluctuated but slightly decreased over the first 16-month period.15 These 2 studies demonstrated a decrease in fatigue prevalence and severity during the extended survival. However, a prospective study showed that approximately 1 in 5 (22%) survivors reported severe posttreatment fatigue, and its intensity did not vary throughout the first 2 to 14 months after treatment.23
Risk factors associated with persistent off-treatment fatigue have been explored. Three pretreatment conditions, including depressive mood, sleep disruptions, and fatigue levels, were associated with persistent fatigue after treatment completion.23 The presence of fatigue before the start of breast cancer treatment was the strongest predictor for persistent fatigue after treatment.23 Higher levels of fatigue before treatment initiation were associated with more severe fatigue during and/or after completion of treatment.23,35 The survivors who experienced evidenced fatigue at the end of cancer treatment were more likely to report persistent fatigue 42 months later.19 It is possible there is a subgroup of survivors who experience high fatigue-associated symptoms across the entire spectrum of cancer survivorship. Furthermore, those survivors are at the highest risk of unrelieved fatigue long after cancer treatment ends. This hypothesis is further supported by evidence from a large European case-control study following a group of long-term breast cancer survivors. The study identified a subgroup (13%) of survivors who had substantial fatigue throughout the entire study period, from prediagnosis up to about 6 years after diagnosis.36 Although the number of survivors who experience continued fatigue may be small, because of the drastic impact of this symptom on the person more research is needed to explore how to intervene in the cycle of fatigue.
The findings of longitudinal studies incorporating fatigue diagnostic criteria19,24 suggest an unexpected presence of delay-onset fatigue. During the 42-month posttreatment follow-up, 7% of breast cancer survivors were identified as new fatigue cases by ICD-10 criteria29–32 at some point (up to 42 months) after treatment.19 Evidence from a cohort study where fatigue cases were identified by SCIN criteria also indicates the presence of delay-onset fatigue, with the increase in fatigue prevalence from 14% at 12-month to 21% at 5-year posttreatment follow-up.24 These findings are in contrast to the common perception that cancer and/or its treatment result in a wide range of symptoms, such as fatigue, which abates at the end of treatment. Additional investigation is needed.
Other than fatigue, sleep disturbance has been presented as 1 of the top 5 concerns reported by survivors across various malignancies.25 It is evident that sleep disturbance continues during the transition to survivorship37 and does not recede with time.26 An estimated 25% to 40% of off-treatment survivors experienced frequent insomnia.26,27 Disrupted sleep was the most severe symptom during extended and long-term survivorship.16,25 Some survivors identified that the effect of poor sleep was even worse than cancer treatment itself.38 Compared with healthy counterparts, survivors reported more problems with night-time sleep36 and worse overall sleep quality.34 Cancer survivors also had greater likelihood of suffering from excessive daytime sleepiness than their spouses/friends (22% vs 16%, respectively).39
Disrupted sleep pattern is often concurrent with fatigue in cancer survivorship.15,16 Like patients receiving major cancer treatments, survivors with fatigue were more susceptible to poor sleep than nonfatigued survivors (68% vs 28%, respectively).24 Altered sleep patterns have been associated with off-treatment fatigue,23,26,40 and increased sleep disturbances were associated with worse fatigue.16,24
In comparison to fatigue and disrupted sleep pattern, there are notably fewer data available on depression/mood disturbance and pain and even fewer on cognitive limitation during extended and long-term survivorship. Although limited in number and scope, existing studies demonstrate that pain, cognitive disturbance, and depression persist years after treatment termination.22,41,42 For example, 19.5% of those who survived various malignancies greater than 2 years from diagnosis reported current pain.43 Among long-term breast cancer survivors, 42% experienced chronic pain,44 37.5% reported depression,26 and 80% showed moderate to severe deficits in attention.45 Scarce longitudinal data demonstrated that the occurrence of mood disturbance declined from 22% at the end of cancer treatment to 12% at 12 months after treatment.24 A gender-specific pattern was observed as female survivors showed a decrease in depressive mood (concave curve), whereas male survivors showed an increase at midyear (convex curve) in the first year after chemotherapy completion.15 No data were available to describe the symptom trajectories of pain and cognitive dysfunction during extended and long-term survivorship.
Most of the survivorship studies of depression/mood disturbance, pain, and cognitive dysfunction report associations with other symptoms such as fatigue or QOL. Studies of breast or ovarian survivors have shown that higher fatigue was associated with more deficits in attention function,45 greater depression,17,26,46 and worse pain.16,17 Pain interfered with general activity and enjoyment of life16 and was associated with greater distress16 and decreased QOL.43
Quality of Life
A multidimensional concept, QOL generally comprises at least 4 aspects, including disease- or treatment-related symptoms and physical, psychological, and social functioning.47 The residual symptoms including fatigue, depression, and pain, alone or together, have shown the greatest impact on overall QOL during the transition to survivorship.13,17 Off-treatment survivors with persistent fatigue had poorer health status and worse functioning than survivors without fatigue long after diagnosis.19,36,48 Studies have also reported the association of various symptoms with spheres of QOL. For example, in long-term breast cancer survivors, cognitive dysfunction was associated with lower well-being and physical functioning.45 Fatigue, sleep, depression, and pain were associated with both poorer physical and mental QOL.26,44
Regarding survivors’ QOL, the literature reveals some controversy. A few studies show that cancer survivors have compatible or even better health or QOL than the general population,49,50 whereas other studies report cancer survivors had more limited functioning and poorer health status relative to adults without a cancer history.26,51–53 A national study in Denmark suggested that effects of breast cancer treatment did not impact QOL, as the long-term survivors tended to rate their QOL better than did the general female population.50 On the other hand, a recent US survey found approximately 24.5% and 10.1% of cancer survivors had poor physical and mental QOL, respectively, compared with 10.2% and 5.9% of adults without cancer.53 Higher prevalence (44% and 35%, respectively) of moderately to severely impaired physical and mental QOL was reported among Italian long-term breast cancer survivors.26
Factors affecting QOL, such as presence of symptoms, elapsed time since diagnosis, the specific aspect of QOL examined, and age, may account for the contrary findings. Residual symptoms from previous cancer treatment negatively impact survivors’ QOL. For example, although fatigued survivors reported poorer health status than did age-matched control subjects, no differences were found between nonfatigued survivors and their healthy counterparts.19 In addition, aspects of QOL are affected differently along the survivorship trajectory. Survivors often show faster recovery in mental function but slower recovery in physical function. Longitudinal data observed a slower recovery of physical function among breast cancer survivors, even though their mental function exceeded the population norm a year after treatment.54 Similar patterns were observed in a group of breast and prostate cancer survivors who recently completed major treatment; although their mental health exceeded that of a population of similar ages, their physical health was below the population norm.37
Quality of life is affected by the individual’s age during the survivorship. Compared with their sex- and age-matched control subjects, older breast cancer survivors (aged ≥75 years) reported better mental and physical function.20 Those survivors aged 65 to 74 years showed higher mental but lower physical function.20 The younger survivors (aged 45–64 years) showed the worst mental health.26 The literature supports that younger age is associated with poorer QOL and higher symptom distress among cancer survivors.13,15,20–22,45,46,48,50,53 For example, in long-term breast cancer survivors, younger age was associated with persistent fatigue,48 worse attention function,45 and lower QOL.50 Among survivors of heterogeneous malignancies, younger age was a predictor of high symptom burden, high distress, and low QOL.13,15 In addition, lower socioeconomic status and a greater number of comorbidities were common risk factors for poor QOL.46,53 For example, unemployment or lower income was associated with lower physical and mental QOL.49,55 More education was associated with better QOL.46,49,55 Decreased comorbidities was associated with less symptom burden13,26 and better QOL.20,53
Among working-age survivors, postcancer employment has a direct impact on their QOL as employment provides access to health insurance and financial stability.27 Returning to the workforce is often a sign of resuming normal after cancer treatment ends. However, a recent cohort study revealed that nearly one-quarter (24%) of the working-age off-treatment survivors reported changes in employment status due to illness, and approximately one-third (38%) were unemployed.27 Another study described nearly 1 in 6 working-age cancer survivors (16.8%) reporting an inability to work due to health.52 Residual symptom burden has been associated with postcancer unemployment. Survivors who reported moderate or greater symptom interference were 8 times more likely than their less-affected counterparts to be unemployed because of cancer.27 Fatigue has been identified as a strong predictor of employment status27 and associated with significant disability and increased healthcare utilization among cancer survivors.24
The most recent available disability data from the 2005 Survey of Income and Program Participation identified cancer as the 11th leading cause of disability56 and the main health condition associated with disability for 1,007,000 adults in the United States.56 Survivors of cancer were at higher risk of more comorbid medical conditions.52,57 When coupled with comorbid chronic illness, the likelihood of poor health and disability among cancer survivors was 5 to 10 times higher than for adults without a history of cancer.52 Among the survivors unable to work because of cancer, 19.5% had received disability benefits from the Social Security Administration in the United States.52 A higher disability rate of 50% has been reported among French long-term survivors with persistent fatigue.58 The high prevalence of poor health and disability among cancer survivors demonstrates an escalating and important public health concern.
Family members are the main long-term care providers for persons during illness and into survivorship. Family members, too, are affected by the cancer illness of their loved ones. Studies have revealed that many caregivers continue to provide care to the survivor long after treatment concludes.59 These caregivers are the major provider of emotional and physical support to the patient, but this relationship is not without a cost to the caregiver.
Caregivers spent the equivalent of a part-time job (20 or more hours per week) providing care to the survivor.60 This level of support to the patient can take a physical toll on the caregiver and create feelings of burden. Caregivers of survivors up to 5 years after diagnosis reported high levels of burden.61 The highest burden was related to management of care, then role strain, and then health, financial, and personal strain in descending order.61 Feelings of burden in caregiving have been associated with depression.61 A large proportion of these caregivers also had unmet needs for training and providing care to the survivor.61 These findings suggest a need for caregiver assessment, education, and intervention to decrease levels of burden and increase feelings of self-efficacy.
Age was also a factor that influenced the caregiving experience. A longitudinal study spanning 5 years showed that older caregivers had better mental but poorer physical QOL than did younger caregivers at all measured time points.62,63 Younger age was associated with greater psychological distress and poorer mental QOL, whereas older caregivers reported better mental health.59,62 These studies also showed that unmet psychosocial needs resulted in poorer mental QOL well into survivorship. Lower emotional and informational support was a predictor of higher anxiety and depression in caregivers.64 Levels of anxiety and depression remained constant across time points ranging from 6 months to 5 years after diagnosis in caregivers who experienced these feelings.64 Gender was another factor influencing the caregiving experience. Females in general and spouses in particular were more prone to distress in the form of depression, anxiety, intrusive thoughts, and hyperarousal.65 In a qualitative study, spouses of patients with prostate cancer reported feeling helpless, sad, violated, and scared, as if they were living in a state of silent suffering.66 Spouses frequently experienced a gnawing worry about their partner.67–69 Many spouses struggled to learn new household skills that had been in their partner’s domain prior to the onset of illness and treatment, often resulting in changes in their lifestyle.66,67,69 Female spouses in particular felt distress when their husband did not communicate openly about the illness.66,70 Caregivers often struggled daily to balance their own health needs with the needs of their spouse.66,67 Furthermore, research has shown that family caregivers experienced sleep disturbance comparable to that of the patients following cancer diagnosis and treatment.71
Caregivers were directly affected by patients’ bodily problems that resulted from cancer treatment. Researchers found that caregivers who experienced bother related to their loved ones’ urinary, bowel, and sexual function experienced more distress and had poorer QOL.66,68,72,73 The patient’s physical limitations related to treatment often resulted in a limitation to the caregiver’s ability to continue social activities,66,68 creating feelings of isolation.
Caregivers who felt the survivor’s medical needs were not being met in early survivorship reported poorer QOL.62 In addition, several socioeconomic factors affect caregivers’ QOL. For example, higher education was associated with lower feelings of burden and depression.60,61 Caregivers who were able to work reported less financial burden.61 Lower income, on the other hand, was associated with feelings of burden and depression61 and poor QOL.62,70
It has been nearly 3 decades since Mullan11 published Seasons of Survival. Many challenges cancer survivors faced in that time continue to confront survivors. It is evident that cancer survivors experience significant residual symptoms and functional limitations during the extended stage of survival. Although “fear of recurrence”11 as a major psychological challenge has not been extensively studied, the resultant symptoms such as depression are common during extended survival. For some survivors, the obstinate symptoms persist into long-term survival and hamper their resumption of normal life. Postcancer employment is a significant challenge facing long-term survivors11 and their families. Resources have been lacking especially for working-age survivors. Targeted interventions are required to effectively reduce symptoms and assist survivors as they reenter the active world. Studies are also needed to determine the effect and optimal timing and duration of interventions to improve postcancer employment.
This literature review identified several issues related to symptom burden following cancer treatment and the effects on QOL of both the patient and the caregiver. During extended and long-term survivorship, while many survivors are burdened by residual symptoms and therefore have poorer physical QOL, the caregivers’ emotional QOL is affected to a greater extent than that of survivors. Some caregivers develop physical symptoms, such as sleep disturbance, which can result from chronic psychological distress. Overall, both survivors and caregivers are found to have prevalent health concerns and poor QOL. Age and socioeconomic status affect survivors’ and caregivers’ QOL in the same manner. Younger age is associated with more distress and poorer mental QOL. On the other hand, higher education is associated with less psychological burden and better QOL, perhaps because with more education, individuals are more aware of the available resources.
Both survivors’ and spouse caregivers’ concerns related to sexual dysfunction continued into survivorship. Spouses who reported more symptom bother related to sexual function also reported more feelings of stress. Perceptions of stress and threat could be related to changes within their relationship. Research has shown that the impact of decreased sexual functioning affects a man’s overall concept of masculinity and his ability to relate to his spouse.74 Although patients tended to worry more than did spouses about problems with sexual function, caregivers too mourned the changes in their sexual relationships long into survivorship.66,73,74 This emphasizes the need for healthcare providers to include spouses in discussions throughout the treatment process so that both survivors and caregivers are aware of potential outcomes and how to manage these possibilities. Offering sexual counseling following treatment for cancers that affect sexual function might improve QOL by helping couples manage relationship intimacy and facilitate open communication.
This review indicates survivors who have been successfully treated for breast, prostate, colorectal, and gynecologic cancers continue to experience symptoms many years into survivorship, for some, more than 20 years after the diagnosis of cancer. Among all reported symptoms, fatigue, pain, depression, and sleep disruption are common across different malignancies. Fatigue, especially, appears to have the greatest impact on the individual’s life across the entire spectrum of cancer survivorship.25 Fatigue also has considerable societal impact as it is associated with disability and healthcare utilization among survivors.24 Survivors of cancer should be educated about these global issues they may confront in the long run. Symptom management interventions should continue for a minimum of 1 year after treatment completion. Pain management interventions should continue to be prioritized in long-term survivorship care. This review identified that urinary and/or sexual morbidities were more notable in survivors of prostrate, gynecologic, or male breast cancers.74–77 However, recommendations for diagnosis-specific post treatment interventions cannot be made because other than breast cancer only small subsets of the other cancers are included in this review. Furthermore, this review is not inclusive of all cancer types; it is likely that there are other symptoms lingering in other survivor groups that are not discussed in this review. A thorough symptom evaluation, such as utilizing checklists with a wide range of symptoms, is recommended for future studies to provide more comprehensive understanding of global or diagnosis-specific symptom burden among cancer survivors.
The current state of knowledge in cancer survivorship has been limited by a lack of consensus on measurement. For example, different measurement tools have yielded a wide range of fatigue prevalence. Varying measures may also contribute to the controversy in survivors’ QOL, as different QOL measures have different population norms to compare. Future studies should consider using more standardized outcome measures, such as PROMIS (Patient-Reported Outcomes Measurement Information System),78 to allow comparisons across different studies and conditions. In addition, many of the studies reviewed here took place during the first 1 to 2 years following the completion of treatment. More longitudinal studies are needed that extend further into survivorship to examine the severity and persistence of symptom burden and QOL issues. Many studies presented in this review included heterogeneous samples of age. As age has consistently shown effects on symptom burden and QOL, interventions for survivors and caregivers should be tailored by the individuals’ developmental stages. Future studies also need to consider age as a factor that affects the survivorship experience.
Although caregiving needs are often overlooked in cancer management and treatment, this review supports the necessity to regard caregivers as secondary survivors7,8 as these individuals, along with their loved ones, are also striving for the survival of cancer. Survivors and their caregivers continue to struggle with symptom burden and diminished QOL long into survivorship. Whereas survivors experienced ongoing symptoms such as fatigue, pain, depression, sleep disturbance, and cognitive problems, caregivers too struggled with depression, anxiety, feelings of isolation, and psychological distress, all of which affected survivors’ and caregivers’ QOL. A better assessment of issues affecting survivors and caregivers during extended and long-term survivorship following cancer treatment will allow healthcare providers to develop strategies that promote positive coping, facilitate communication, and enhance QOL. More longitudinal studies are needed to look at the persistence and severity of symptom burden over time and the ongoing effects of these symptoms on QOL. Interventions designed to help alleviate symptom burden in those most affected are needed.
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Keywords:© 2015 Wolters Kluwer Health | Lippincott Williams & Wilkins
Cancer survivorship; Caregiver; Quality of life; Symptom