LITERATURE REVIEW
PROBLEM AND PREVALENCE OF CANCER
Cancer is one of the most dangerous and most painful of all chronic illnesses, and is also the second most common cause of death after heart disease ( 2005). It is a disease characterized by the uncontrolled growth and spread of abnormal cells ( 2003). The growth of cancer can originate from both external and internal factors. Different treatments available for cancer include surgery, radiation, chemotherapy, hormones and immunotherapy (2003).Cancer can develop from most types of cells in different parts of the body, and each cancer has its own pattern of growth and spread. Some cancers remain in the body for years without showing any symptoms. Others can grow, invade and spread rapidly, and are fatal in a short period of time ( 2003, 2004).
Cancer is not only life-threatening, but may also greatly affect the quality of life of patients. There are many cancer-related problems that may cause difficulties for both the patient and medical attendants (2003). Difficulties may develop in the period between diagnosis and primary treatment, during primary treatment, and during follow-up ( 2003). Problems may arise during surgery, chemotherapy and radiotherapy like excessive pain on the patient’s part and the degradation of their quality of life. According to the Scottish Intercollegiate Guidelines Network () (2000), one third of patients with cancer do not experience pain, but two thirds of them experience severe pain. Of both those who experience mild and severe pain, 80% of them experience more than two pains in their body ( 2000).
Cancer is not only life-threatening, but is also an economic plague. According to Research America (2002), each person who dies from cancer loses an estimated 15 years of life. Collectively, more than 8 million years of life were lost in 1998 because of cancer. The cost of cancer in 2000 is estimated at more than 0 billion: billion for direct medical costs; 0 billion for low productivity and premature death.
CANCER IN AUSTRALIA
The Cancer in Australia white papers that were documented by the Australian Institute of Health and Welfare (2003, 2004) are useful references about the prevalence of cancer in Australia. According to the report, there were 85,231 new cancer cases and 35,466 deaths due to cancer in Australia in 2000, but it excludes non-melanoma skin cancers ( 2003). This increased to 88,398 new cancer cases and 36,319 deaths in 2001, excluding non-melanoma skin cancers (2003). Cancer in Australia accounts for 30% of male deaths and 25% of female deaths in 2000, and accounts for 31% of male deaths and 26% of female deaths in 2001 ( 2003, 2004). This indicates that the number of cancer cases and deaths related to cancer are increasing annually in Australia – a situation that is alarming to the citizens and the government.
According to the report, the most common cancers causing death in Australia in 2000 are lung (4,594 deaths in 2000), prostate (2,665) and colorectal (2,569) cancers in males, and breast (2,521), lung (2,317) and colorectal (2,149) cancers in females ( 2003). This number has slightly increased in 2001 to 4,657 deaths from lung cancer, 2,718 from prostate, 2,601 from colorectal cancers in males, and 2,594 from breast, 2,382 from lung and 2,153 from colorectal cancers in females (, 2004).
The report also revealed that there were an estimated 267,600 persons in Australia with malignant cancer who were residing in private households, and out of that number, 170,200 were males and 97,400 were females ( 2003).
Cancer in Australia is also strongly attributed with smoking and drinking. In 2000, cancers attributed to excessive alcohol consumption accounted for 3.2% of all new cases of cancer, while those cases attributed to smoking accounted for 12.7% of all new cases of cancer (AIHW, 2003). On the other hand cancers attributed to smoking were 21.6% of all cancer deaths. In 2001, cancers attributed to alcohol consumption remains to 3.2% of all new cases of cancer, while those cases attributed to smoking decreased to 12.0% of all new cases of cancer. On the other hand, cancer deaths attributed to smoking very slightly decreased to 21.5% in 2001 ( 2003).
The types of cancers attributed to alcohol consumption include oral cancers; esophagus; liver; larynx; and female breast cancer. On the other hand, those attributed to smoking include: oral cancers; esophagus; stomach; anus; pancreas; larynx; lung; vulva; penis; kidney; renal pelvis; and bladder (2003).
Findings about treatment and referrals in cancer in Australia show that there is a significant increase in the overall rate of other treatments provided between 1998–2000 and 2002–2004. However, there was also a significant decrease in prescribing rates, for cancer between 1998 to 2000; when the rate was 30.5 per 100 contacts (confidence interval: 27.7–33.3) and 2002 to 2004 when the rate was 25.3 per 100 ( 2004).
CANCER IN ARAB COUNTRIES
(2005) stated that the cases of cancer in the Arab world are increasing due to the following reasons: reduction in the incidence of infectious disease; increase in the population average age; Westernization of social and dietary habits; increase smoking; increase in the incidence of hepatitis B and C; wrong use of plastic materials, pesticides and insecticides; and low socioeconomic status.
Lung cancer is the most prevalent type of cancer in Arab countries, and the rest of the world. Tunisia has the most prevalent cases of lung cancer in males with 23.3%. It is followed by Morocco and Algeria with18.8% and 16.8% respectively (2005). On the other hand, the prevalence rate in females is highest in Iraq with 4.7%. It is followed by Lebanon and other GC with 4.3% and 3.4% respectively ( 2005). On the other hand, the global incidence of lung cancer is increasing at an alarming rate – 0.5% per year ( 2005).
On the other hand, other prevalent types of cancer in the Arab communities include colorectal cancer, stomach cancer, liver cancer, prostate cancer, bladder cancer, breast cancer, cervical cancer, ovarian cancer, uterine cancer, lymphomas, leukemia, and thyroid cancer ( 2005).
NEEDS OF PATIENT WITH CANCER
Many studies have focused on the different needs of cancer patients. As mentioned earlier, cancer and its symptoms may have a negative emotional and psychological impact on the people concerned. According to the Canadian Strategy for Cancer Control (2004), the full range of needs of cancer patients are attended to physical, emotional, social, informational, psychological, financial, spiritual and practical, that is why care delivery should be continuous, comprehensive and coordinated. What follows is a set of studies that focus on the different needs of patients with cancer.
The study of (2005) entitled “Mapping the quality of life and unmet needs of urban women with metastatic breast cancer” partly explored the needs of cancer patients as they specifically focused on investigating the quality of life and support and information needs of urban women with advanced breast cancer. The setting was on four large urban hospitals in Melbourne, Australia and the samples consist of 105 women with advanced breast cancer, who then completed a questionnaire that contained the European Organization of Research and Treatment of Cancer Quality of Life Q-C30 and the Supportive Care Needs Survey ( 2005). The study found that one quarter and a third of the women reported difficulties with their physical, role and social functioning, and a little over a quarter of the women reported poor global health status (2005). The study also found that fatigue is one of the most prevalent unmet needs among urban women with cancer ( 2005). Another interesting finding of the study is that there were top 20 unmet needs, and 11 were from the psychological domain, 7 from the health systems domain and 2 from the physical domain. The two items most commonly rated as moderate or high need were ‘concerns about the worries of those close to you’ (41%) and ‘to be informed about things you can do to help yourself get well’ (41%). The next most common items related to fears about the future and control over the situation, including being well informed. The items from the physical domain, which were ‘pain’ and ‘not being able to do the things you used to’, were ranked below 10 in the list ( 2005).
Overall, the list of psychological unmet needs of patients with breast cancer includes: concerns about the worries of loved ones; uncertainty about the future; fears about physical disability or deterioration; learning to feel in control of his or her situation; fears about cancer spreading; concerns about the ability of loved ones to cope; fears about the cancer returning; changes to usual lifestyle; anxiety about having any treatment; making the most out of the time; and worry that results of treatment are beyond his or her control (2005).
On the other hand, there also unmet health information needs that were highlighted in the study. In particular prevalence order, they are: informed about things they can do to help them become well; one member of the hospital staff to whom they can talk; informed about cancer which is under control or diminishing; being informed of their test results as soon as its feasible; being informed about the benefits or side effects of treatments; being given explanation about the tests; and access to professional council if ever the patient, family or friends need it (2005).
Finally, there are also physical daily living unmet needs such as: pain; not being able to do things they can usually do; easy car parking at the hospital or clinic; monetary travel allowance for travel, treatment, and equipment; drop-in counseling services; 24-hour telephone support and cancer advisory service; relaxation classes; home cleaning service; counseling services; brochures about services and benefits for patients; home gardening service; comfortable waiting room; library books and videos about cancer and related issues; food or drink facilities in or near the clinic waiting room; home nursing service; transport service to and from the hospital or clinic; respite care; and child minding at the hospital or clinic (2005).
Despite the findings that (2005) generated, their study still has several limitations. First, the study cannot generally speak for every cases of cancer since it only focused on a particular type of cancer – breast cancer. Although types of cancer often provide similar experiences in terms of pain and discomfort, there are more distressing types such as lung cancer and brain cancer, and other lighter cases such as leukemia. This study basically shows the importance of investigating the psychological distresses of patients with different types of cancer. Investigating cancer types individually will provide the opportunity to compare data and draw better consensus regarding the met or unmet needs of cancer patients.
Furthermore, another limitation of the study is gender. Since most of cases of breast cancer are on women, the study only covered female respondents, who have different coping mechanisms and needs compared with male patients. It is interesting to cover both sexes as previous studies from different fields identified the differences of their behavior and attitude.
Faith and Needs
Another study that explored specific aspects of needs of patients with cancer is the study of (2003) entitled “Addressing patient’s emotional and spiritual needs”. The study is basically a comprehensive, systematic literature review and original research that aims to ascertain whether patients’ emotional and spiritual needs are important, whether hospitals are effective in addressing these needs, and what strategies should guide improvement. The patient satisfaction data were derived from the ’ 2001 National Inpatient Database; survey data were collected from 1,732,562 patients between January 2001 and December 2001. The study found that a strong relationship between the “degree to which staff addressed emotional/spiritual needs” and overall patient satisfaction. Three measures most highly correlated with this measure of emotional/spiritual care were staff response to concerns/complaints, staff effort to include patients in decisions about treatment, and staff sensitivity to the inconvenience that health problems and hospitalization can cause (2003).
The strength of this study can be attributed to the number of respondents it covered. The study basically provided clear generalized quantitative findings, which is basically one of the strengths of quantitative research. However, this study can be questioned about its validity because of the short survey time it provided for the research given that there were a considerable huge number of respondents involved. Furthermore, the study fails to address other patient needs and only focused on the relationship of those needs with the manner the staff addresses them. Nonetheless, although this study may not be directly a research on the needs or unmet needs of patients with cancer, it showed that the emotions and spiritual side of cancer patients are active and are needed to be taken into consideration.
In another research, (2002) explored the impact of having a religious faith on the cancer experience of patients and informal carers, focusing primarily on the association between faith and psychosocial needs. With 402 completed questionnaires, the researchers confirmed that around two-thirds of patients indicated they had an informal carer (2002). Then, they examined the relationship between the importance of 48 needs and faith for 189 paired patients and carers, while controlling for the effect of eight socio-demographic and clinical variables, using a logistic regression analysis (2002). Surprisingly, the study found that patients with expressed faith identified fewer psychosocial needs than those without faith ( 2002). In contrast, carers with expressed faith identified more needs than those without faith in relation to support from family and neighbors (2002). Carers also needed more help with finding a sense of purpose and meaning, and help in dealing with unpredictability ( 2002).
(2002) study is another research that tries to link faith with the psychological well-being of cancer patients. Although the study did not specifically focus on psychological needs per se, it managed to identify some and be able to link them with faith or religion. This study basically confirmed the existence of psychological needs on cancer patients and that they struggle to manage or cope with such needs.
(2005) also focused on assessing cancer patient’s spiritual needs and preferences. The researchers conducted a phase-I study to test the practicability and usefulness of a short (15–30 min) clinical interview for the assessment of cancer patients’ spiritual needs and preferences. The researchers asked the physicians to assess the spirituality of their patients using the semi-structured interview SPIR. The focus was on the meaning and effect of spirituality in the patient’s life and coping system. Visual Analogue Scales (VAS) and Questionnaires were completed following the interview for rating whether SPIR had been helpful or distressing, and to what extent spirituality seemed important in the patient’s life and in coping with cancer disease. Thirty oncological outpatients were convinced to participate in the study. The study showed some interesting results, specifically discrepancies in terms of gender. Patients who considered the interview as very helpful (VAS > 7) were more often female (P = 0.002). There were no differences between patients who evaluated the SPIR as very helpful and those who did not, as far as diagnosis, educational level or belonging to a religious community were concerned ( 2005).
(2005) study may have also focused on faith to prove the psychological needs of patients, but they however showed the significance of gender in such behavior. As mentioned earlier, gender can be a determining factor that may differentiate the different needs of cancer patients. The study found that female, given that they view the study helpful and who believes that faith is an important factor of coping, showed that they are more positive thinkers compared to their male counterparts. To have this attitude may mean that female patients have less psychological distress or psychological needs than their male counterparts. Nonetheless, although the study is a generalized piece of research where a huge number of respondents were surveyed, it can be said that one of the limitations of the study perhaps, was its failure to acquire deeper opinion from the patients. Basically, the survey presented was straightforward and gave the patients without the opportunity to express into full details how they feel about the subject. Nonetheless, it can be considered related with this current study since it confirmed the existence of psychological needs of cancer patients – male or female.
Prevalence of Psychological Needs
In a different study, (2001) did not just focused on the impact of faith on cancer patients but generally focused on identifying the prevalence of psychosocial need, and the contributory factors to need, among cancer patients, using a descriptive cross-sectional questionnaire survey of adult cancer patients. The participants of the study have the following characteristics: tumor type (breast, colorectal, lymphoma, lung), being 1 month from a ‘critical moment’ in the cancer journey (i.e. diagnosis, end of first treatment, recurrence, move from active treatment to palliative care), and aged over 18 years ( 2001). The study found that psychosocial needs relating to the need categories ‘health professionals’, ‘information’ and ‘support networks’ are commonly expressed and strongly felt by cancer patients. On the contrary, needs relating to ‘identity’, ‘emotional and spiritual’ issues and ‘practical’ issues are less commonly expressed but are also strongly felt. Particular needs are related to tumor type, illness ‘critical moment’, age, gender, health status, socioeconomic and other social factors (2001).
The strength of (2001) lies in the variety of cancer types it explored. Unlike the previous study reviewed earlier, which only focused on breast cancer, study covered several types such as breast, colorectal, lymphoma and lung. One significant important finding of the study is that patients with those types of cancer share one significant similarity – those cancer patients are concerned more with the basic needs such as contact with health professionals, information, financial problems etc rather than being concerned with emotional problems such as fear of being left out by friends, fear of being ridiculed, fear of losing sympathy, etc. However, the study still fails to deliver several factors that could have made the study more complete than it is. First, the respondents of the study are very small compared to other large scale studies compared earlier. Second, the study fails to identify the key differences of needs by gender and by age, merely focusing only on the differences on the two types of psychological needs it identified.
The Effects of Traveling
The study of (2005) also examined a specific need of cancer patients. This study is unique from the others because it focuses on the psychological, physical, social, and economic impact of traveling great distances for cancer treatment. 410 respondents were asked to fill up a survey questionnaire that included questions about demographics; cancer treatment centre accessed; types of cancer treatment received; frequency and modes of travel; physical, emotional, and economic impact; and social supports. Quantitative data was entered into and analyzed using the SPSS software program. The study found that in terms of physical impact of traveling, more than half of the respondents reported experiencing physical symptoms as a result of traveling to a cancer centre, and 28.6% reported discomfort ranging from “a fair amount” to “very much.” On the other hand, the study also found out the most prevalent economic concern. More than half of respondents (61.7%) reported that traveling for cancer treatments affected their ability to carry out their job or schoolwork, and almost a quarter (23.4%) reported that traveling totally prevented them from doing their job. Finally, in terms of psychological and social impacts, most of the respondents or 80.5% of them reported emotional difficulty associated with travel from home to a cancer centre. Furthermore, 76.8% of spouses and 78.5% of families also found travel from home to a cancer centre to be emotionally difficult.
This study specifically focused on a specific concern of cancer patients, which is traveling for treatment. Although the study did not generally focus on the needs of cancer patients, it mentioned and analyzed a specific factor that may trigger such needs. In a way, the relation of this study to the current study is small, but nonetheless, it provided an idea that a single factor alone such as traveling can be a cause or trigger of great psychological and emotional needs experienced by cancer patients. But like other previous studies, the study failed to differentiate the respondents by gender or by age, factors that could have unraveled something new in terms of how each would be affected by traveling and how it would generate psychological distress on them.
Furthermore, like other previous studies that particular study suffers from small-scale respondents –meaning the number of respondents covered was not suitable enough or valid out of the total population of the setting. The study was quantitative and was able to provide a generalized result. However, the number of respondents should have been increased to compensate for the quantitative method. The advantage of quantitative research is that it can cover large-scale respondents. Not taking advantage of the fact was huge limitation for the study.
Other Studies
A study by (2003) focused on the needs of cancer patients. Specifically, the study concerns in finding out which needs are regarded as important by patients and their carers; and which are the unmet needs of patients and their carers. The respondents of the study were 233 paired cancer patients and their carers, which were surveyed with a cross-sectional questionnaire survey in three health authorities in North West England. Interestingly, most of the pair of respondents expressed the importance of having good relationships with health-care professionals and receiving good-quality information. However, the study also found that patients were likely to identify more needs as important. But contrary to that result, carers have more unmet needs, reflecting their comparative neglect. The researchers concluded that ‘universal’ needs such as having good relationship with healthcare professionals and receiving quality services are being met, but ‘situational’ and ‘personal’ needs, particularly among carers, are relatively unmet and require greater attention on the part of nurses and primary care professionals (2003).
That study by (2003) is related with this study because it identified the fact that most cancer patient’s situational and personal needs are not being met by carers basically because the cancer patients prefer it that way. The study basically emphasized that the needs of cancer patients cannot be provided by the hospital staff alone. Some needs are very personal, which the patients need to keep as is. However, one specific need mentioned was the professional needs of cancer patients, which they often receive. Professional needs may include the quality of service or the friendliness or promptness of the hospital staff.
The study’s strength was that it was thoroughly made by quantitative approach and the number of respondents was reasonable enough. However, it did not have any patient categories such as the type of cancer the patients have and its relationship with specific met or unmet needs. It also fails to identify the role of gender and age, and the severity of the cancer with the psychological or other needs of the patients. It did not also group the psychological needs of cancer patients.
(2005) followed another study, which was then focused on grouping cancer patients by psychosocial needs. The study was basically a systematic classification of cancer patients, which was produced on the basis of their needs. In the study, 380 cancer patients responded to a self-completion questionnaire that included a 48-item inventory of psychosocial needs covering seven needs domains (information, health professionals, emotional and spiritual, identity, practical, support, and child care). Latent class analysis was used to identify differing patterns of psychosocial need. The researchers found four classes of needs, and they categorized them from Group A to D. Group A had a high level of expressed needs “across the board,” whereas Group D had a low level of expressed needs “across the board.” Group B had high levels of expressed needs in all except the emotional, spiritual, identity, and practical domains, and Group C had low levels of expressed needs in all but the information and health professionals’ domains (2005).
This study is relevant because it presented cancer patients’ needs in different categories. The researchers tried to prove that there are different types of cancer patients with different needs. It expressed that some groups of cancer patients have lower level of needs in terms of spiritual and emotional needs while having higher needs for information and professional domains. This categorization is highly relevant for this study because it may be encountered at any given point during the analysis of data. The expressed needs of patients are very complex and general, basically difficult to explain at a glance. With this categorized findings of (2005) however, it may be easy to analyze the data of the current study because the types of needs are more understood than before.
The Impact of Feedbacks
(2006) examined the effectiveness of giving medical oncologists immediate feedback about cancer patients’ self-reported psychosocial well-being in reducing those patients’ levels of anxiety, depression, perceived needs and physical symptoms. Chosen cancer patients were subjected to intervention and control groups. The respondents completed a computerized survey assessing their psychosocial well-being while waiting to see the oncologist. Intervention patients’ responses were immediately scored and summary reports were placed in each patient’s file for follow-up. A total of 48 participants (25 interventions and 23 controls) completed the survey four times. Intervention patients who reported a debilitating physical symptom at visit 2 were significantly less likely to report a debilitating physical symptom at visit 3 compared with control patients. The study found that reductions in levels of anxiety, depression and perceived needs among intervention patients were not significantly different to control patients. The researchers concluded that repeated collection and immediate feedback of patient-reported health information to oncologists has potential to improve patients’ symptom control, but has little impact upon emotional well-being, including those at high risk.
This study may not be directly related with the current study but it helps emphasize that psychological problems are separate problems of people with cancer. Perhaps the strength of thus study is that it teaches that psychological problems can be prevented, but not through the help of cancer experts, but rather psychology experts or psychiatrists.
However, the study is also limited in terms of the number of respondents it covered. For a study expecting a generalized result, the sample was rather small. Furthermore, it again failed to emphasize the variation of results in gender, types of cancer and age, but rather merely focused on the relationship of the two variables it focused on.
Needs of Cancer Patients in Rural and Remote Areas
Another useful study about the needs of cancer patients is the study by (2002) entitled: “The needs of cancer patients and their families from rural and remote areas of Queensland”. Similar to the study of 2005), (2002) study focused on the impact of traveling for treatment on cancer patients and their families. The data collection approach of the study was quantitative. Twenty-eight consecutive cancer patients, who were receiving radiation therapy treatment and 19 family carers, completed a structured needs assessment questionnaire and an in-depth interview. (2002) found that both patients and carers reported moderate to high levels of unmet psychological need. However, Carers were found to have higher levels of anxiety than patients, although both groups had higher anxiety levels than the general population. Furthermore, the most frequently identified demands of a dual burden of caring is taking more responsibility for household tasks and organizing new living arrangements for the family. Another highlight of the study is that nearly 40% of carers reported some disruption to their schedule and half reported experiencing financial difficulties (2002).
This study is relevant because it confirmed that cancer patients have higher anxiety levels than normal persons. Furthermore, it also emphasized that cancer is such a stressful disease as shown by the carers. Because it is very distressing, not only are the patients affected but also their carers. This finding is also relevant because the instrument that was used for data collection was a structured needs assessment questionnaire, which basically proved that rural cancer patients may have more unmet needs than urban cancer patients – another factor that should be considered when determining the factors that affect the psychological conditions of the patients.
Emotional Needs Usually Undetected?
(2000) stated that there is a report that most cancer patients suffer severe emotional distress. Studies show that between 25 and 60 percent of cancer patients meet the diagnostic criteria for clinical depression. Unfortunately, oncologists, or cancer specialists, and other doctors do not often refer patients for mental health treatment (2000). (2000) further reported that cancer patients are initially anxious about sheer survival, and then typically start worrying later about pain, disfigurement and dependence before shifting to financial concerns about their illness (2000).
(2002) argued that cancer patient’s emotional needs are often undetected by oncologists. (2002) cited that “Oncologists often are more attuned to their patients’ requests for information about cancer and cancer treatment than they are to requests for emotional support”. Physicians are not always able to detect and respond effectively on the information and emotional needs of cancer patients. They have difficulty in responding to indirect forms of communication. (2002) cited from a study conducted by researchers of University of Sydney and found out the lack of capability of physicians to response to cancer patient’s emotional concerns. In the study, patients gave informational cues almost twice as often as emotional cues. Younger and female patients gave more emotional cues and asked more questions than did older and male patients. Most cues related to treatment issues rather than psychosocial, prognostic or other issues. However, the study found that although oncologists effectively identified and responded to the patients’ needs for information, they less consistently addressed patients’ cues for emotional support. The study showed that 38 percent of the emotional cues were not detected or not addressed by the oncologists. But the study also showed that the ability of doctors to answer the emotional questions is not the basis of patients for satisfaction. (2002) emphasized that this study supports previous studies that cancer patients are reluctant to disclose emotional concerns, perhaps because they do not want to burden their doctors.
That study is significant with this current study because it once again emphasized that psychological problems are separate problems of people with cancer. Psychological or emotional problems should not be the concern of oncologist or cancer physicians because they should be handled by psychologists or psychiatrists. Furthermore, it stresses that it is in the patient’s decision on whether or not he or she wants his or her psychological or emotional needs to be met. As stressed in that study, psychological or emotional distress is a very personal matter.
One limitation of that study is again the lack of gender description – a limitation among many “met and unmet needs of cancer patients” study. The comparison of the demographic data of the respondents has also been left out in the study, meaning it suffers the same limitations of its predecessors.
Synthesis
All of the studies presented earlier are useful relevant literatures for this current study because they all emphasized the existence of different needs of patients with cancer. They all share the same beliefs that psychological, economic and emotional distresses of the cancer patients are as painful as the disease they experience. Among the results, they also share the same findings that patients often choose not to confide their emotional or psychological problems with physicians or nurses. They often express problems on professional needs and financial needs but not physical or emotional. Patients want to keep such problems personal and will not confide. Relatives or friends should be able to pinpoint a psychological or emotional problem and be able to consult a psychologist before the condition can lead to a full blown psychological disorder.
Another interesting find in the literature review is that cancer patients can be categorized in terms on the level of their needs. But most of the study agrees that cancer patients’ always ask support for information and professional needs rather than for emotional or psychological needs.
The studies show similarity in the lack of emphasis on the demographic data of the respondents. All of the studies did not compare important demographic factors such as gender, age, financial status of the respondents, etc. However, some managed to focus on specific factors such as location, miles being traveled, and the female gender, but most lack comparison with opposite demographics. Future studies should basically try to determine if there is a difference between the met and unmet needs of male and female cancer patients, old and young, rich or poor. The distinction should be determined because it is a basic research interest. The demographic data of the respondents will be given focus in this current research because it may reveal differences among different groups of respondents.
PSYCHOLOGICAL FUNCTIONING
According to the United State’s National Institute of Mental Health (2002), emotional upheavals are common experiences of cancer patients. For instance, fear of death, interruption of life plans, changes in body image and self-esteem, changes in social role, lifestyle, and medical bills are important issues to be faced (2002) stated that depression usually occurs, but other types of psychological disorders such as bipolar disorder and anxiety disorder can also manifest. The NIMH stated that the biggest misconceptions about these psychological implications are that they are normally experienced by people with cancer. NIMH stressed that such perception should be changed because depression and anxiety disorder can be treated simultaneously with cancer treatments (2002).
The following are information on the several psychological disorders that are proven related on cancer.
Anxiety Disorder
The common predictors of anxiety disorder are the emergence of emotions such as excessive fear, worry, or uneasiness to an individual. Anxiety is a normal part of human development, arising in relation to novel stimuli, strangers, heights, and separation during infancy and toddlerhood, and largely disappearing during the pre-school years (1988;1998). On the other hand, anxiety disorders are frequently related in content to such normal fears and worries, though the level is extreme, and they may appear close in time to the corresponding normal fears and worries or several years later (1996; 1990; 1993).
Anxiety disorders include: phobias (unrealistic and overwhelming fears of objects or situation); panic disorder (terrifying “panic attacks”); obsessive-compulsive disorder (causes children to become “trapped” in a pattern of repeated thoughts and behaviors, such as counting or hand washing); and post-traumatic stress disorder (a pattern of flashbacks and other symptoms and occurs in children who have experienced a psychologically distressing event) ( 2004).
Severe Depression
Depression, as defined by several psychology books is actually a kind of mental illness. Virtually, no one escapes depression. The illness cut across people of different ages, genders, races, and socio-economic statuses. During earlier generations, depression was perceived as a disease of old people only (2000). Nonetheless, previous researches revealed that men and women are both at risk to suffer depression within their lifetimes. However, there is a significant disparity on the gathered statistics; women tend to be more highly susceptible (20-25%) to depression than their male counterpart (7-12%). On the one hand, people 60 years and older are more prone to experience chronic depression than younger ones. A person could suffer from it for about half a year to two years. If ignored, depression could even lead to a more serious illness (2000).
Basically, there are seven types of depression ( 2000). The first type of depression what people normally experience; a sudden feeling of sadness. The second type is the adjustment disorder, which is the kind of depression that is caused by inability of people to accommodate certain changes in their regular routines. Another one is the “mild depression” or “dysthymia”. People suffering from this kind of depression usually feel useless and wasted. They felt like crying all the time. And usually certain thoughts they became melancholic for no reason at all. The fourth type is the “major or severe depression”. This is the most devastating and most serious case of depression. Because of its destructive nature, it is included in one of the major behavioural problems that numerous people of all ages face today. According to recent studies, people suffering form this kind of depression are most likely to make an attempt to kill themselves. Usually, these people are the ones who do not mention anything about committing suicide ( 2000). Then there is also manic depression, atypical depression, and Seasonal Affective Disorder. They are also dangerous types of depressions ( 2003).
Depression is common for a person to be depressed into something emotionally moving to be overly or severely depressed is not. According to the (1996), symptoms of depression include sad mood, loss of interest or pleasure in activities that were once enjoyed, change in appetite or weight, difficulty sleeping or oversleeping, physical slowing or agitation, energy loss, feelings of worthlessness or inappropriate guilt, difficulty thinking or concentrating, and recurrent thoughts of death or suicide. Having more than five of the symptoms indicates severe depression (1996). Major depression often begins between ages 15 to 30 but also can appear in children ( 1996). However, (2003) provided a rather different predictor of severe depression. According to (2003), the disorder is marked by changes in: emotions (children often feel sad, cry, or feel worthless); motivation (children lose interest in play activities, or schoolwork declines); physical well-being (children may experience changes in appetite or sleeping patterns and may have vague physical complaints); and thoughts (children believe they are ugly, unable to do anything right, or that the world or life is hopeless).
Cases on Cancer Patients
One foreign study that actually focused in determining the psychological distresses of cancer patients is the study by (2005). Specifically, the study sought to characterize the psychological status of digestive cancer patients, and to investigate the relationship between psychological characteristics and clinical factors. The study found that the mean scores of anxiety and depression were significantly higher in the advanced-phase group than in the other two groups. Furthermore, the study also found that depression increased from before surgery to before discharge, and did not return to the preoperative level at 6 months after discharge, but no significant effect on anxiety ( 2005). The study also found that anxiety in the ‘middle age’ and ‘chemotherapy’ groups was more severe than in the ‘elderly’ and ‘no chemotherapy’ groups (2005). It also found that depression in the ‘medical treatment equipment’, ‘chemotherapy’, and ‘long-term hospitalization’ groups was more severe than in the ‘no equipment’, ‘no chemotherapy’, and ‘standard-term hospitalization’ groups (2005).
The study may be credible but it has its limitation of having only few samples because the approach was control group. However, the usefulness of this study is that in identifies another important factor that causes psychological distress on cancer patients, which is age. Furthermore, it also identified the quality of the equipment being used for cancer treatment as a factor that may affect the psychological and emotional condition of patients with cancer. Finally, it confirmed that depression can be linked with cancer patients. However, it only focused only on a specific type of cancer, which was digestive cancer. The results may be different if it explored other types of cancer and compared it with other. Furthermore, the study also lacked demographic data focus, a common limitation among cancer patient studies as discussed earlier.
In another foreign study, it was investigated if whether breast cancer patients have increased incidence of psychiatric admission with affective disorder, anxiety disorder or non-natural mortality compared with the general female population (2002). The setting was in Denmark and the focus was on breast cancer. The findings of the study showed that the standardized incidence ratio of first-ever psychiatric admission with affective disorder was 1.49 (95% CI: 1.35–1.63) and with anxiety disorder 1.25 (95% CI: 1.06–1.46). The standardized non-natural mortality ratio during the first year after breast cancer diagnosis was 1.54 (95% CI: 1.27–1.87) ( 2002). The researchers concluded that breast cancer patients have significantly increased incidence of psychiatric admission with affective disorder, anxiety disorders, and non-natural mortality (2002).
The weakness of this study, if it can be considered a weakness, is that it did not acquire first-hand in-depth information from the respondents because it mainly relied on a survey questionnaire. However, it did well in its quantitative findings and confirmed the relationship of anxiety disorder with females with breast cancer. Again, the study is another question of the demographic factors since female is only gender explored. Furthermore, there was no categorization of age, which makes one wonder on whether anxiety may best manifest when in the adolescent or later adult years.
The study of (2000) also testifies to the relationship between anxiety and cancer. The study’s purpose was to compare anxiety and depression in Taiwanese cancer patients with and without pain. (2000) found that the prevalence of both anxiety and depression in the pain group was significantly higher than that for the pain-free group. After controlling the effect of disease-related factors, patient’s pain status had a significant effect on depression, but not on anxiety. Furthermore, they also found that patients with pain had more depressive symptoms than patients without pain ( 2000).
This study is also significant with the current study because it identifies another factor for psychological distress on cancer patients. This study identified that the level of pain that the patient experience may also determine the level of depression or anxiety the patient may develop. Similarly, the study has the same limitations as the other studies previously reviewed. However, it basically provided an insight on the role of pain on psychological distress and also cleared the relationship of anxiety with pain.
In (2000) it was stated that one of the symptoms and implications of lung cancer is related to the nervous system, which are called nervous system syndromes. Accordingly, some or most of the paraneoplastic syndromes that affect the nervous system appear to be caused by an attack of antibodies against healthy tissue. Some of the complications include psychosis and the mimicking of mental illnesses such as schizophrenia or bipolar disorder (O2000). Furthermore, an affected nervous system can also lead to dementia ( 2000).
Although that specific paragraph was only derived from a non-research article, it is a good insight on how cancer can affect ones brain and in an instance, change the psychological behavior of the patient.
Quality of Life
(2002) conducted a study that assesses the quality of life of adolescents with cancer. The researchers viewed that quality of life of cancer patients are important nursing outcome variables that are directly and indirectly influenced by nursing care. The study found that major concerns of adolescents with cancer include: symptoms distress (78%); anxiety related treatment (75%); body image (69%); and physical well-being (34%) Similarly the two major concerns of mothers and nurses were also symptoms distress and anxiety related treatment. But noticeably, nurses do not seem to give or give only minimum importance or concern to the cognitive abilities of the patients. The study also found that patients cope with physical distress through leisure time exercise patterns, while they cope with psychological distress through denial.
This study somehow contradicts with the previous studies reviewed earlier – that most cancer patients are concerned with information and professional needs than emotional needs. However, it was also mentioned that the lack of specific focus and comparison of demographic data on research is prevalent in the cancer patient needs research. The study just previously presented focused on a specific demographic data, which is the adolescence stage, and found interesting results that are different from that of previous studies. This study showed that adolescents, given that they are young and adventurous, are more concerned with the distresses that bothers them instead of the quality of treatment they receive. They do not bother knowing how professional the staffs are or how much they will pay for the hospital and treatment fees. This study confirmed that demographic data plays a strong part in comparing results of research.
In another study, (1998) explored the quality of life of lung cancer patients by literature review covering cases from the last 25 years (1970 to 1995). Materials were searched and acquired in MEDLINE and manually. One of the interesting findings in the literature reviews was the importance of communication in improving lung cancer patients’ quality of life. (1998) stated that early studies on the subject showed that psychological adjustment in lung cancer patients might be improved if patients were given opportunities to ask questions about their disease and participate in decisions about treatment. Some of the studies reviewed showed that communication problems with medical staff were strongly associated with anxiety and with anticipatory nausea and vomiting. The main highlights of the study are: quality of life assessment can be a prognostic factor and predictor of survival; and that the need for inclusion of quality of life as a valid end point in evaluation of the treatment of lung cancer patients has been emphasized. The review also emphasized the importance of a supportive environment in helping cancer patients with their problems.
The weakness of the study is that it did not cover actual respondents but instead used previous data as the main data of the study. However, because of the long span of years of the studies included in the research, it is convincing in a sense that it summarized previous findings of studies within 25 years. One of the most important points it emphasized is that the staffs of the hospital taking care of the patient may influence or trigger the anxiety or depression of lung cancer patients. On the other hand, another limitation of the study is that it only focused on a single type of cancer, which is lung cancer. It also did not emphasize the demographic differences of the results and fails to expand or explain what has been collated for the study overall.
A specific study assessed the place of patient satisfaction in quality assessment of lung cancer thoracic surgery by comparing quality of non-small cell lung cancer (NSCLC) surgical care with patient satisfaction (2005). The study found that one-year survival rates for patients with stage I-II and stage IIIA NSCLC were 84% and 58%, respectively. On the other hand, mean patient satisfaction was 78 [+ or -] 13/100 and 69 [+ or -] 13/100 for global staff and structure index, respectively ([+ or -] SD). Mean score for quality of surgical care was 88.7/100 (range, 51 to 100). The absence of postoperative complication was significantly related to a high level of satisfaction regarding the structure (r = 0.30, p < 0.05). Other features of patient satisfaction did not show a significant correlation with the quality of the preoperative selection process or the surgical procedure itself (r < 0.20) (2005). Overall, the study did not support a shortcut between quality of care and patient satisfaction.
This study by (2005) basically confirmed the importance of quality of care for patients with cancer. However, the main finding shows that quality of care does not necessarily result in patient satisfaction. It shows that there may be other stronger factors that may affect the satisfaction of patients with cancer but the study failed to identify it. This may be an indication that the ability of medical staff to comfort and take care of the psychological distresses of the patients may be linked with patient satisfaction. Unfortunately, that was not explored or even suggested in the study.
(2005), on the other hand, identify barriers to cancer patients expressing their psychological concerns, and tried to recommend strategies to assist oncologists to elicit, recognize, and manage psychological distress in their patients. The method used for the study was also a literature search. Medline, Psychlit, and the Cochrane databases were searched for articles relating to the detection of emotional distress in patients. The researchers found that patients can give verbal and non-verbal information about their emotional state. But, there were a considerable number of patients who may not reveal emotional issues as they believe it is not a doctor’s role to help with their emotional concerns. Also, patients may normalize or somatize their feelings. The study also found from the literature review that anxiety and depression can mimic physical symptoms of cancer or treatments, and consequently emotional distress may not be detected. In terms of approaches, the researchers found that techniques such as active listening, using open questions and emotional words, responding appropriately to patients’ emotional cues, and a patient-centered consulting style can assist in detection. Screening tools for psychological distress and patient question prompt sheets administered prior to the consultation can also be useful. In conclusion, the application of basic communication techniques enhances detection of patients’ emotional concerns. They recommended that training oncologists in these techniques should improve the psychosocial care of cancer patients.
As mentioned earlier, cancer patients often keep their psychological and emotional concerns to themselves and do not want any of the medical staff or the oncologists to be involved. The study of (2005) confirmed that depression and other psychological symptoms may affect negatively the quality of life of patients with cancer and even suggested that oncologists should be trained to identify them or handle them. However, the problem should obviously be handled by a psychologist, which is still not yet explored in cancer patient treatment.
The limitation of that study, however, is that it fails to acquire first hand data from actual respondents but instead acquired second-hand data from previous research. It also fails to categorize and compare the results by gender, by age, and by status leaving many questions unanswered.
(2001) attempted to draw together converging lines of evidence on the mental attributes that may favor prolonged survival in the face of metastatic cancer. They found that cancer patients eventually learn to understand what was important and meaningful to them (“authenticity”) and to exercise freedom of choice in determining how to live their lives (“autonomy”). (2001) found that survivors use a variety of self-help strategies, such as relaxation, mental imaging, monitoring thoughts, reflection and journaling, and in particular, meditation. Patients also strengthen their spiritual beliefs, showing that faith has a place in coping with cancer (2001).
In another study, (2003) examined the quality of life of cancer patients in the final stage of life. The respondents were categorized into two, being taken care of by: a nurse-led palliative care team (PCT I) or a physician-led palliative care team (PCT II). The study showed that there were no statistical significant differences in pain intensity, pain quality and HRQOL between PCT I and PCT II patients. The use of VAS was significantly more common in PCT II than PCT I. Patients in PCT I had significantly longer survival time, counted from the beginning of their study time until death, compared with PCT II patients.
Synthesis
The rest of the literature review showed that quality of life of patients with cancer is being degraded with the different psychological distresses that they encounter. It also shows that anxiety and depression plays a huge role in the degradation of their quality of life. However, the limitations of the studies in this field are similar with the limitations of the studies in the psychological functioning of patients with cancer. There was also a lack of emphasis on the demographic differences of the results. There was less focus in comparing the conditions with the age of the respondents, or the gender, or financial status, which all could have been huge determining factors. Some of the studies in quality of life were also conducted using secondary research – meaning that there has been enough research done about the subject. However, it still fails to clearly draw the relationship between cancer patients’ emotional functioning, quality of life and their met and unmet needs.
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