Illness Experience and Health Care
’I asked the doctor — I looked him straight in the face and I asked ’Is it cancer?’ and he said, ’Yes.’ Well, I’d rather know the truth — it’s better than imagining all the time. I asked my own doctor in the first place, ’Was it … ?’ and I didn’t get to say the word, and he said ’We don’t know,’ so naturally I thought it must be. If I’m ill I’d rather know what I’m suffering from, because you don’t die any sooner for knowing about it.’
Aitken-Swan and Easson (1959: 779)
In this chapter, we consider the nature of cancer, risk factors, living with cancer, caring for someone with cancer, and the design and testing of a psychological intervention. Cancer refers to a collection of 100—200 dread diseases caused by the uncontrolled division of cells. There are multiple risk factors, including genetic, environmental and behavioural toxins. The disease can have profound physical, psychosocial and existential impacts. The evidence suggests that psychosocial interventions have not yet demonstrated their full potential. The quality of evaluation research with psychosocial interventions has generally been rather poor and the findings inconclusive. We analyse a case study of a randomized controlled trial with an intervention designed to alleviate stress in breast and colon cancer patients. This RCT illustrates methodological issues with small samples and a lack of appropriate controls, problems that are impeding progress in the field of interventions.
What is Cancer?
Cancer is the name given to a collection of related diseases.1 In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues. Cancer can start almost anywhere in the human body, which is made up of trillions of cells. Normally, human cells grow and divide to form new cells as the body needs them. When cells grow old or become damaged, they die, and new cells take their place. There are more than 100 types of cancer. Types of cancer are usually named for the organs or tissues where the cancers form. For example, lung cancer starts in cells of the lung and brain cancer starts in cells of the brain. Cancers also may be described by the type of cell that formed them, such as an epithelial cell or a squamous cell.
1. This chapter covers a vast subject with 100—200 types of cancer. At the time of writing, Google Scholar listed 4.77 million publications on ’cancer’, while ’psychosocial issues of cancer’ yielded 603,000 results (accessed on 19 February 2017. The section on ’What is cancer?’ is courtesy of the National Institute of Health National Cancer Institute: https://www.cancer.gov [Public domain].
Carcinomas are the most common type of cancer. They are formed by epithelial cells, which are the cells that cover the inside and outside surfaces of the body. There are many types of epithelial cells, which often have a column-like shape when viewed under a microscope.
Carcinomas that begin in different epithelial cell types have specific names:
· Adenocarcinoma is a cancer that forms in epithelial cells that produce fluids or mucus. Tissues with this type of epithelial cell are sometimes called glandular tissues. Most cancers of the breast, colon and prostate are adenocarcinomas.
· Basal cell carcinoma is a cancer that begins in the lower or basal (base) layer of the epidermis, which is a person’s outer layer of skin.
· Squamous cell carcinoma is a cancer that forms in squamous cells, which are epithelial cells that lie just beneath the outer surface of the skin. Squamous cells also line many other organs, including the stomach, intestines, lungs, bladder and kidneys. Squamous cells look flat, like fish scales, when viewed under a microscope. Squamous cell carcinomas are sometimes called epidermoid carcinomas.
· Transitional cell carcinoma is a cancer that forms in a type of epithelial tissue called transitional epithelium, or urothelium. This tissue, which is made up of many layers of epithelial cells that can get bigger and smaller, is found in the linings of the bladder, ureters and part of the kidneys (renal pelvis), and a few other organs. Some cancers of the bladder, ureters and kidneys are transitional cell carcinomas.
Sarcomas are cancers that form in bone and soft tissues, including muscle, fat, blood vessels, lymph vessels and fibrous tissue (such as tendons and ligaments).
· Osteosarcoma is the most common cancer of bone. The most common types of soft tissue sarcoma are leiomyosarcoma, Kaposi sarcoma, malignant fibrous histiocytoma, liposarcoma and dermatofibrosarcoma protuberans.
Cancers that begin in the blood-forming tissue of the bone marrow are called leukemias. These cancers do not form solid tumours. Instead, large numbers of abnormal white blood cells (leukemia cells and leukemic blast cells) build up in the blood and bone marrow, crowding out normal blood cells. The low level of normal blood cells can make it harder for the body to get oxygen to its tissues, control bleeding or fight infections.
There are four common types of leukemia, which are grouped according to how quickly the disease gets worse (acute or chronic) and on the type of blood cell the cancer starts in (lymphoblastic or myeloid).
Lymphoma is cancer that begins in lymphocytes (T cells or B cells). These are disease-fighting white blood cells that are part of the immune system. In lymphoma, abnormal lymphocytes build up in lymph nodes and lymph vessels, as well as in other organs of the body.
There are two main types of lymphoma:
· Hodgkin lymphoma — People with this disease have abnormal lymphocytes that are called Reed-Sternberg cells. These cells usually form from B cells.
· Non-Hodgkin lymphoma — This is a large group of cancers that start in lymphocytes. The cancers can grow quickly or slowly and can form from B cells or T cells.
Multiple myeloma is cancer that begins in plasma cells, another type of immune cell. The abnormal plasma cells, called myeloma cells, build up in the bone marrow and form tumours in bones all through the body. Multiple myeloma is also called plasma cell myeloma and Kahler disease.
Melanoma is cancer that begins in cells that become melanocytes, which are specialized cells that make melanin (the pigment that gives skin its colour). Most melanomas form on the skin, but melanomas can also form in other pigmented tissues, such as the eye.
Brain and Spinal Cord Tumours
There are different types of brain and spinal cord tumour. These tumours are named according to the type of cell in which they formed and where the tumour first formed in the central nervous system. For example, an astrocytic tumour begins in star-shaped brain cells called astrocytes, which help keep nerve cells healthy. Brain tumours can be benign (not cancerous) or malignant (cancerous).
Germ cell tumours
Germ cell tumours are a type of tumour that begins in the cells that give rise to sperm or eggs. These tumours can occur almost anywhere in the body and can be either benign or malignant.
Neuroendocrine tumours form from cells that release hormones into the blood in response to a signal from the nervous system. These tumours, which may make higher-than-normal amounts of hormones, can cause many different symptoms.
Carcinoid tumours are a type of neuroendocrine tumour. They are slow-growing tumours that are usually found in the gastrointestinal system (most often in the rectum and small intestine).
Risk Factors for Cancer
The following are risk factors for cancer:
· growing older;
· tobacco use;
· sunlight, sunlamps and tanning machines, i.e., ultraviolet (UV) radiation;
· ionizing radiation, e.g., radioactive fallout, radon gas, X-rays;
· certain chemicals and other substances, e.g., asbestos, benzene, benzidine, cadmium, nickel or vinyl chloride;
· some bacteria (e.g., helicobacter pylori);
· some viruses (e.g., hepatitis B virus, human papillomavirus, human immunodeficiency virus, helicobacter pylori, and others);
· certain hormones;
· family history of cancer;
· poor diet, lack of physical activity, or being overweight.
The study of the psychosocial aspects of cancer care and treatment is referred to as ’psycho-oncology’. Psycho-oncology is concerned with (1) the psychological responses of patients, families and caregivers to cancer at all stages of the disease, and (2) the psychosocial factors that may influence the disease process. A key concept is quality of life (QoL).
Source: SEER Cancer Stat Facts (2017)
Figure 21.1 A schematic of cancer and the metastatic process
Metastasis is a complex, multistep process (a) An in-situ cancer surrounded by an intact basement membrane. (b) Invasion requires reversible changes in cell—cell and cell—extracellular-matrix adherence. Metastasizing cells can (c) enter via the lymphatics, or (d) directly enter the circulation. (e) Survival and arrest of tumour cells, and extravasion of the circulatory system. (f) Metastatic colonization of the distant site progresses through single cells and (g) progressively growing angiogenic metastases
Source: Steeg (2003). Reproduced with permission
Unfortunately, many cancer patients remain untreated owing to stigmatization and lack of resources to diagnose, treat and support. Cancer causes anxiety and depression in more than one-third of patients and often affects the sufferer’s family emotionally, socially and economically. Inequalities in cancer treatment and care occur across different regions and social groups. In spite of increased publicity and reduced incidence of breast cancer, breast self-examination has not been proven to prevent cancer (Gøtzsche, 2013).
There are several aspects of the cancer experience that psychological expertise can help to understand, especially pain, fatigue, depression and anxiety. Treatments with chemotherapy (CT) and radiotherapy (RT) tend to be aggressive, and a decline of psychosocial function before, during and after treatment is quite common.
Figure 21.2 US cancer mortality trends
Source: US Mortality Files, National Centre for Health Statistics, DCD
The research literature is limited by methodological issues: most studies are cross-sectional, meaning that problems reported may not be caused by cancer and its treatment; many studies involve women only; most studies are conducted in the USA or Canada; and the majority of studies include mainly white people, with few participants from ethnic minority groups.
We turn to some of the main issues that arise in living with cancer: diagnosis, treatment and survivorship. End-of-life care is reviewed in Chapter 25.
Living With Cancer
The diagnosis of cancer is a significant and emotionally charged event in anybody’s life. The ’C-word’ on the lips of a doctor is the thing that most patients absolutely dread. Every two minutes someone in the UK is diagnosed with cancer. About half of people born after 1960 will develop some form of cancer during their lifetime (NHS Choices, 2017). Two million people are living with or beyond cancer in the UK (Macmillan Cancer Support, 2015). Higher incidence, an ageing population and improved survival rates mean that this figure will double to 4 million over the next 20 years. In the USA, the number of people living with a history of cancer was estimated to be 13.7 million in 2012 which will rise to 18 million by 2022.
A cancer diagnosis affects everyone differently, but it is common to experience shock, sadness, fear about the future, anger, guilt, denial, confusion, stress, anxiety and depression, or many of these rolled into one. Cancer diagnosis has been recognized as a stressor that can potentially precipitate post-traumatic stress disorder (PTSD; Kangas et al., 2002).
It is best practice today for the patient to be fully informed of their diagnosis. This was not always the case and, in some regions, may not be even today. A study in 1959 classified the reactions of 231 selected patients who were told they had curable cancer (Aitken-Swan and Easson, 1959). The results showed that: Two-thirds said they were glad to know the truth, 19% denied they had been told, while only 7% (all women) resented the consultant’s frankness. The family doctors of 35 patients reported no untoward effects of this knowledge and none opposed the general policy of telling such patients their diagnosis. It is concluded that since a sufficiently large majority of patients are able to accept the truth, and benefit from the knowledge, all patients with the more curable cancers, unless obviously unstable, should be told their diagnosis. (Aitken-Swan and Easson, 1959: 779)
Early diagnosis gives people the best possible chance of survival. However, cancer is still a relatively unusual condition for an individual GP to encounter. An Electronic Cancer Decision Support tool is being used by GPs across England and currently is focused on five cancer types, including lung cancer. Diagnosis by computer may also become more possible in the future. For example, skin cancers can already be detected using image analysis alone and machines can already identify certain cancers as successfully as skin-cancer doctors (Leachman and Merlino, 2017).
The main treatments are surgery, chemotherapy, radiation therapy, immunotherapy or targeted therapy. Most people have a combination of treatments, such as surgery with chemotherapy and/or radiation therapy. Some patients also choose complementary therapies to support the physical therapies obtained in hospital. The treatments all bring significant uncertainties, side effects and stress.
If the cancer is completely contained in a specific area and has not spread, surgery treats the part of the body where the tumour is located. Usually, the earlier a cancer is found the easier it is to remove it. The surgeon removes the tumour and some normal tissue from around the cancer (a ’clear margin’) and may also remove the lymph nodes nearest to the cancer, in case they contain cancer cells.
The surgeon sends the tissue that they remove to a laboratory for examination under a microscope. The findings help the surgeon to decide whether any further treatment is required to reduce the risk of the cancer coming back. Some people have treatment before surgery to help shrink a cancer and make it easier to remove, which is called neoadjuvant treatment.
During an operation, surgeons may find that a cancer has spread further than expected, in which case the operation might take longer than planned or may have to be terminated. If cancer has spread to another part of the body, surgery cannot usually cure it. With some types of cancer, surgery can help people to live for a long time and may sometimes lead to a cure. When a cancer has spread, a treatment that works throughout the body, such as chemotherapy, biological therapy or hormone therapy, is likely to lead to a better outcome. Radiotherapy can control symptoms caused by areas of cancer elsewhere in the body.
Radiotherapy (RT) is used in a variety of ways depending on the specific features of the case. Curative or radical radiotherapy treatment aims to cure a patient of their cancer by destroying a cancerous tumour. The length of the course of treatment depends on the size and type of the cancer and its location. Curative radiotherapy may be combined with other treatments, such as surgery, chemotherapy, hormonal therapy or biological therapy. Radiotherapy can also be used to relieve symptoms, for example to reduce pain, a form of palliative treatment.
Radiotherapy is sometimes given before or after surgery. Preoperative radiotherapy is given to shrink a tumour and make it safer and easier to remove or to reduce the risk of the cancer spreading during surgery. Postoperative or adjuvant radiotherapy is given to kill off any remaining cancer cells after the operation with the aim of lowering the risk of the cancer coming back. It will often be used in breast cancer, rectal cancer and cancers of the head and neck area.
Chemotherapy (CT) can be given before, during or after a course of radiotherapy. Chemotherapy and radiotherapy given together is called chemoradiotherapy or chemoradiation. In cancer treatment, chemotherapy means treatment with cell-killing (cytotoxic) drugs. A single chemotherapy drug may be administered or a combination of drugs. There are more than 100 different drugs currently available. Whether chemotherapy is suitable, and which drugs might be offered, depends on many factors, such as the type of cancer, the origin of the cancer, the grade of cancer, whether it has spread and the patient’s general health.
Biological therapy (BT) can be administered singly or in combination with radiotherapy to treat some types of cancer. These therapies act directly on processes in cells in an attempt to stop cancer cells from dividing and growing, to seek out cancer cells and kill them or to encourage the immune system to attack cancer cells. Whether a patient is offered biological therapy depends on the type of cancer, the stage of cancer and the other cancer treatments the patient has had.
Total body irradiation
Total body irradiation (TBI) may be given to patients having a bone marrow transplant or stem cell transplant, for example for some types of leukaemia or lymphoma. The treatment destroys the bone marrow cells. New bone marrow or stem cells must then be supplied into the bloodstream. The bone marrow or stem cells are obtained from the patient’s own body or from a donor.
With such a broad and complex array of treatments, it is easy to understand if the cancer patient feels a degree of trepidation about the outcome. The significant uncertainties can best be dealt with in an open and transparent relationship with the responsible health professionals. An important concept in cancer care is shared decision-making. Shared decision-making (SDM) involves mutual engagement and participation, in which information is shared in a context that acknowledges the different values and preferences of both parties (Mahmoodi and Sargeant, 2017). A description of what SDM meant to one patient, ’Jane’, follows:
I wanted to take part in decision-making, have discussions and ask questions about the different treatments so I could better understand my options. But when it actually came down to deciding which treatment was best for me, I decided to share that task with my oncologist. I think it’s a difficult one to make on your own and I am happy I decided to make it with my doctor. I felt much supported that way. Choosing to share the responsibility of decision-making made the task so much easier. (Mahmoodi and Sargeant, 2017: 4)
However, not all patients want to share in decision-making. For example, here are the views of ’Charlotte’:
When I got diagnosed, I was given a big information booklet which I didn’t look at. I had so many opportunities to have a say, to discuss the options with my oncologist and be a part of decision-making process, but I didn’t want to. I didn’t want to absorb any knowledge that could worry me more. … I chose not to be involved in decision-making full stop, let alone share decision-making. I totally avoided having those conversations together, and just let him decide. (Mahmoodi and Sargeant, 2017: 5)
In some cases, an oncologist may decide on the treatment and then simply inform and explain to the patient, which the patient accepts as sharing. However, it is information sharing about the treatment decision itself that is shared, as in the example of ’Paula’:
I wasn’t given a decision to make. I was told I had to have chemotherapy because of my cancer grade. But not having a choice didn’t bother me. I was happy because I was well informed, and I think that’s really important. … When I saw the oncologist, he explained everything to me about the treatment. For me, shared decision-making is being explained what is going to happen. By the doctor sharing all his knowledge with me, and allowing me to know all I needed to know, that’s what makes it a shared decision. (Mahmoodi and Sargeant, 2017: 5)
The later reduced version of SDM may often be the only pragmatic way of proceeding in many cases and is quite well accepted by patients.
Cancer treatments can cause many different side effects — problems that occur when treatment affects healthy tissues or organs. When one considers all of these possible unpleasant side effects that treatment can often bring, the case for SDM is a strong one. Ultimately, it is the patient’s choice whether to accept a treatment that is offered. Side effects vary from person to person, even among those receiving the same treatment. Some people have very few side effects while others have many. The type(s) of treatment received, as well as the amount or frequency of the treatment, age and general health of the patient may also influence the type and severity of the side effects.
Often, treatment is feared as much as the illness itself. Common side effects caused by cancer treatment include:
· Appetite loss;
· Bleeding and bruising (thrombocytopenia);
· Hair loss (alopecia);
· Infection and neutropenia;
· Memory or noncentration problems;
· Mouth and throat problems;
· Nausea and vomiting;
· Nerve problems (peripheral neuropathy);
· Psychosocial issues;
· Sexual and fertility problems (men);
· Sexual and fertility problems (women);
· Skin and nail changes;
· Sleep problems;
· Urinary and bladder problems.
Psychosocial issues in cancer treatment
Psychosocial issues are commonly encountered in cancer treatment. They include depression, anxiety, PTSD, insomnia, fatigue, pain, hopelessness, sexual concerns, identity problems, body image disturbances and social isolation. In a review of 97 studies, Hess and Chen (2014) reported that approximately one-third of radiotherapy patients experienced some form of psychosocial function decline. Their review indicated that anxiety may dissipate after initiation of RT, whereas depression tends to persist throughout and after RT. They reported that severe physical symptoms and time-related factors predicted psychosocial function decline, which can be improved by psychotherapy and interventions aimed at improving patient education. It has been suggested that differences in coping with cancer occur between people with different attachment styles (Jimenez, 2016; Nissen, 2016).
Lack of consistency across studies, however, suggests that measurement, conceptual and methodological issues remain unsolved. Hess and Chen (2014) reported that no less than 86 different assessment tools were being used to monitor RT-related psychosocial function decline, with the Hospital Anxiety and Depression Scale (HADS; Zigmond and Snaith, 1983) (25.8%) and the psychiatric interview (22.6%) being most utilized.
Qualitative studies of patient experience provide an essential perspective, complementing the more statistical approach of quantitative research. In a qualitative analysis of patients’ psychosocial experiences with cancer during the course of oncology treatment with curative intent, Aldaz et al. (2016) identified six themes:
Theme I: diminished sense of well-being caused by physiological and psychological changes, including fatigue, gastrointestinal symptoms (e.g., nausea, reflux and constipation), changed perception of taste, anxiety, insomnia and perceived slower cognitive functioning. Patients described their well-being and enjoyment of day-to-day life as hindered by the uncontrollability of treatment-associated symptoms and subsequent reduced sense of agency and autonomy:
I couldn’t go on bus trips, I couldn’t basically go anywhere … It did change my life quite drastically, you couldn’t go out for a meal, you know it was really quite embarrassing yeah so my social life probably went from being quite good to practically non-existent. (Aldaz et al., 2016: 4)
Theme II: perceived role changes in intimate relationships with their partners, who felt the need to provide constant care to them. Both participants and partners reported that caregiving affected partners’ ability to carry on with their own interests and work commitments. Participants perceived their partners as suffering from emotional distress and having fearful thoughts about losing them to cancer:
Neither of us was trying to control each other and we would discuss things and seek each other’s opinions but … suddenly my loving husband became insistent on me being a good patient. (Aldaz et al., 2016: 6)
Theme III: heightened awareness of limited time and future uncertainty in which the nature of cancer treatment has an ’embedded element of uncertainty about the probabilities of remission and recovery’. Such uncertainty appears to act as a catalyst to an expansion of participants’ present time ’here and now’ awareness:
Well I know that, the chance of me being here this time next year aren’t very good. … I’m on borrowed time. Yeah … that’s the way I’d put it. But I just don’t want to know how long that borrowed time is. (Aldaz et al., 2016: 1)
Another patient spoke metaphorically about the meaning of his experience of worrying in the context of his oncology treatment:
It’s quite insidious and I think it gets into your head as well as your body. … You spend quite a lot of time wondering what might happen next or what is happening now, … where’s this going to go, it actually throws quite a tight lasso around your life. (Aldaz et al., 2016: 3)
Theme IV: a new order of priorities is required. Participants not only worry a lot, they also have to consider the possibility of a shortened life expectancy and take action according to their new order of priorities. They reprioritized what was most important to them in life by reordering priorities from reluctantly giving up work in favour of recovery, making effort to spend time with family and/or going on an overseas holiday sooner than planned:
Ahh … my family. And the kids, I ring the kids up every day. I talk to all the grandies most days, yeah. (Aldaz et al., 2016: 1)
We just shut everything right down straight away and moved out of the workshop and um, yeah, so financial and work wise, you know it’s been bloody difficult. (Aldaz et al., 2016: 9)
Theme V: ’taking things as they come’:
I don’t treat anything in life as, I just take things as they come and I don’t sit and wonder oh what would’ve happened if I hadn’t had it. I’m not that type of person. I’m very much if there’s an issue, you deal with it, you move on and that’s what I’ve always done throughout my whole life. So this is just a small chapter in my life and so I’ll move on from here. (Aldaz et al., 2016: 8)
Theme VI: development of trust in health professionals. This last theme concerned the trust they felt with their oncologists, acknowledging their high regard for their expert advice and guidance. They valued having the possibility to openly discuss treatment issues and the wider impact in their lives with a professional who showed knowledge and expertise and also a friendly manner of approachability. Participants put themselves ’in the hands of doctors’ (Aldaz et al., 2016: 5) in the knowledge that they were receiving the best possible care:
The level of care that we’re getting is um excellent, very good, I’m very comfortable and I feel very confident every time I go in there that um, that they’re doing everything for me that’s available. (Aldaz et al., 2016: 5)
Patients’ perspectives of qualitative issues in their care can be very informative and helpful in making improvements to services by plugging unmet needs.
Derogatis et al. (1983) examined 215 randomly accessed US cancer patients, who were new admissions to three collaborating cancer centres, for the presence of psychiatric disorder. Each patient was assessed in a psychiatric interview using standardized psychological tests. The DSM-III (American Psychiatric Association, 1980) was used in making the diagnoses. A total of 47% of the patients received a DSM-III diagnosis, with 44% being diagnosed as manifesting a clinical syndrome and 3% with personality disorders. Approximately 68% of the psychiatric diagnoses consisted of adjustment disorders and 13% major affective disorders (depression). The remaining diagnoses were divided between organic mental disorders (8%), personality disorders (7%), and anxiety disorders (4%). Of those patients with a positive psychiatric condition, 85% were experiencing a disorder with depression or anxiety as the central symptom.
Kissane et al. (2004) assessed psychiatric disorder in women with early stage and advanced breast cancer. Similar figures were obtained for psychiatric illness as those found by Deragotis et al. (1983). A total of 303 women with early stage breast cancer were psychiatrically assessed at baseline and compared with 200 women with advanced breast cancer. The early stage patients (mean age 46 years) were an average of three months post-surgery and had an overall prevalence of DSM-IV (American Psychiatric Association, 1994) psychiatric diagnosis of 45%. The metastatic patients (mean age 51 years) were on average 63 months post-primary diagnosis and had an overall prevalence of DSM-IV diagnosis of 42%. The difference was not statistically significant. In women with early stage breast cancer, 36.7% had mood disorders, 9.6% with major depression and 27.1% with minor depression. In the metastatic sample, 31% had mood disorders, 6.5% with major depression and 24.5% with minor depression. Anxiety disorders were present in 8.6% of the early stage group and 6% of women with advanced disease. Fatigue, a history of depression and helplessness, hopelessness or resignation were associated with depression in both groups. The rates of psychosocial distress were high and similar across patients with both early and advanced stage breast cancer.
Miovic and Block (2007) reviewed evidence that around 50% of adult patients with advanced cancer met the criteria for a psychiatric disorder, the most common being adjustment disorders (11—35%) and major depression (5—26%). The large majority of the conditions suffered by cancer patients is highly treatable.
All three of the above studies found similarly high rates of psychiatric illness among adult cancer patients of 45—50%, wherein affective disorders are the most prevalent. Vigilance is needed to detect the signs and symptoms of affective disorders among cancer patients as early as possible so that appropriate treatment can be given. Few instruments exist for evaluating psychiatric illness in children and adolescents, older adults, individuals with cognitive impairments and individuals from different ethnic and cultural groups. These gaps need to be filled.
As a consequence of improvements in treatment an increasing number of patients complete their treatment and spend many years living as cancer survivors. The number of people living with cancer in the UK will double from today’s 2 million to 4 million in the next 20 years (Macmillan, 2015). The number of individuals living with a history of cancer was estimated to be 13.7 million in the USA in 2012 and to rise to 18 million by 2022. The good news is that adults diagnosed with cancer generally show satisfactory psychosocial adjustment over time. However, as a consequence of long-term or late effects of cancer and its treatment, a group of patients are at risk for compromised psychological and physical health. The fear of recurrence is common among cancer survivors. They may also experience survivor guilt.
Stanton et al. (2015) describe survivorship after medical treatment in three phases that they call ’re-entry’, ’early survivorship’ and ’long-term survivorship’. They describe the psychosocial and physical experiences facing adults during these three periods (Figure 21.3).
The re-entry period can be a mixed blessing. Re-entry is the transition from ’cancer patient’ to ’person with a history of cancer’. It covers the point from completion of major cancer treatments, which can take from a few weeks to more than one year, and the next several months. The transition is often a difficult one. The patient is ’handed over’ from the strict and structured protocols of hospital treatment to the more loose ’trial and error’ world of recuperation at home. Patients may be ill-prepared for the re-entry period, where cancer survivors and loved ones may have unrealistic expectations of a rapid recovery and be surprised by their feelings as treatment ends. McKinley (2000: 479) wrote: ’I thought I would feel happy about finally reaching the end of treatment, but instead, I was sobbing. … Instead of joyous, I felt lonely, abandoned, and terrified. This was the rocky beginning of cancer survivorship for me.’
As shown in Figure 21.3, the early survivorship period extends from several months after diagnosis to approximately five years after diagnosis. Treatment-related acute physical illnesses have diminished for most survivors, who will have consolidated and come to terms with the cancer experience psychologically. The whole experience will have ’gelled’ as a profound life event and the survivor will be feeling new hope and expectations for the future, having passed through the zone of greatest existential uncertainty. However, not all is peace and tranquility, because psychosocial and physical consequences can persist or arise periodically. For example, routine cancer surveillance appointments may prompt fear of recurrence. Cancer survivors may often experience ’islands’ of psychosocial disruption after they have recovered from primary treatments (Andersen et al., 1989).
Long-term survivorship is defined by Stanton et al. (2015) as the experience beyond five years after diagnosis, by which time many survivors can expect to attain near-normative values on measures of health-related QoL. However, the five-year marker for long-term survivorship does not imply that psychological or physical recovery is complete. Long-term treatment effects can be evident even many years after cancer diagnosis.
Figure 21.3 Life after treatment
Source: Stanton et al. (2015). Reproduced by permission
Alleged ’Benefit Finding’ and ’Post-Traumatic Growth’
Experiences associated with significant life disruption, threat, distress or adversity can lead to positively evaluated ’growth’ outcomes (Tedeschi and Calhoun, 2004). It has been observed for centuries that benefit finding and post-traumatic growth (PTG) can follow the occurrence of traumatic events, including accidents, warfare, death of a loved one, and cancer diagnosis and treatment). The alleged benefit finding and growth represent a fundamental restorative principle of homeostasis that is continually active towards the achievement of stability, equilibrium and well-being. Adaptation to any life-threatening illness, such as cancer, is facilitated by homeostasis systems that include the drive to find meaning, exert mastery or control over the experience and bolster self-esteem. Growth and benefit finding are frequently reported by cancer survivors as they gain awareness of their illness, its treatment and prognosis. The theoretical model of PTG proposed by Tedeschi and Calhoun suggests that growth can occur in different ways through developing new relationships with others, finding a new appreciation for life, new meanings in life, discovering personal strength, experiencing spiritual change and realizing new opportunities. The experiences of benefit finding and growth are undeniable. The methods currently used for their study, however, raise more questions than answers.
Among cancer populations, reported prevalence rates of perceived PTG range from 53% to 90% and vary according to the type of cancer, time since diagnosis, heterogeneity and ethnicity of the sample, choice of measurement, and many personal factors (Coroiu et al., 2016). Post-traumatic growth is measured using scales such as ’The Post-Traumatic Growth Inventory’ (PTGI), a 21-item measure of positive change following a traumatic or stressful event (Tedeschi and Calhoun, 1996). Respondents rate the degree to which positive change had occurred in their life ’as a result of having cancer’. A total PTGI score and five sub-scale scores (New possibilities, Relating to others, Personal strength, Spiritual change and Appreciation of life) are calculated. Women generally report more benefits than men, and persons experiencing traumatic events report more positive change than persons who have not experienced extraordinary events. It has been suggested by the developers that the Post-Traumatic Growth Inventory ’appears to have utility in determining how successful individuals, coping with the aftermath of trauma, are in reconstructing or strengthening their perceptions of self, others, and the meaning of events’ (Tedeschi and Calhoun, 1996: 455).
Critics have been less than enthusiastic about measuring PTG in this manner. Coyne and Tennen (2010: 23) argue that: Every PTG scale asks participants to rate how much they have changed on each scale item as the result of the crisis they faced. Thus, a respondent must: (a) evaluate her/his current standing on the dimension described in the item, e.g., a sense of closeness to others; (b) recall her/his previous standing on the same dimension; (c) compare the current and previous standings; (d) assess the degree of change; and (e) determine how much of that change can be attributed to the stressful encounter. Psychological science, which purportedly guides positive psychology, tells us that people cannot accurately generate or manipulate the information required to faithfully report trauma- or stress-related growth (or to report benefits) that results from threatening encounters. … The psychological literature demonstrates consistently that people are unable to recollect personal change accurately.
The five steps (a)—(e) certainly are a tall order, and it seems highly doubtful that anybody could achieve them with any accuracy of judgement. It seems naïve to analyse the numbers that research participants place on scales from the PTGI as though they are valid and authentic representations of ’post-traumatic growth’ when there is no attempt being made to validate these measures in the manner of Frazier et al. (2009). In spite of criticisms of the methodology, which suggest that the PTGI and other retrospective measures of PTG do not appear to measure actual pre- to post-trauma change, many studies have been conducted using the PTGI scale.
Coyne and Tennen (2010: 24) have been damning in their critique of the flawed methods and measures concerning PTG: We are at a loss to explain why positive psychology investigators continue to endorse the flawed conceptualization and measurement of personal growth following adversity. Despite Peterson’s … warning that the credibility of positive psychology’s claim to science demands close attention to the evidence, post-traumatic growth — a construct that has now generated hundreds of articles — continues to be studied with flawed methods and a disregard for the evidence generated by psychological science. It is this same pattern of disregard that has encouraged extravagant claims regarding the health benefits of positive psychological states among individuals living with cancer.
Psychologists must think critically and sceptically about their methods, measures and conclusions to eliminate any ’quack’ elements before jumping into print. Patients deserve no less.
Caring for Someone With Cancer
The stress experienced by family members of cancer sufferers is often high. The condition fosters emotional turmoil, with fear, anxiety, stigma, depression, isolation, hopelessness, fatigue, burn-out and insomnia all entering the arena at various stages. The social support provided by immediate family and friends can be a key factor in promoting the patient’s adaptation and QoL. However, ’caregiver burden’ can be high, and interventions are needed on a wider scale to support the informal caregiver.
Social support from caring family and friends is undeniably a major factor in cancer care. Kroenke et al. (2006) prospectively investigated the role of social networks, social support and survival after breast cancer diagnosis. The participants were 2,835 women who had been diagnosed with stages 1 to 4 breast cancer between 1992 and 2002. Of these women, 224 deaths (107 of these related to breast cancer) had occurred by 2004. Women who were socially isolated before diagnosis had a subsequent 66% increased risk of all-cause mortality and a two-fold increased risk of breast cancer mortality compared with women who were socially integrated. The authors concluded this effect is likely to be caused by their lack of beneficial caregiving from friends, relatives and adult children.
Soylu et al. (2015) explored the psychological distress and loneliness in 100 caregivers of advanced oncological inpatients in Turkey. The study examined the relationships among levels of loneliness, anxiety, depression and other variables on primary caregivers and cancer inpatients. Loneliness and anxiety scores were significantly higher for the primary caregivers of inpatients with terminal stage cancer than primary caregivers of inpatients with advanced stage cancer.
A qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer in Australia (Ussher et al., 2011). There were 62 carers (42 women and 20 men) from a range of cancer types, stages and relationship dyads who took part in semi-structured interviews. Not surprisingly, participants indicated that cancer had led to a change in roles and in dynamics of the relationship, including the taking of quasi-medical tasks and decisions, neglect of the self and other relationships, changes to emotions or even personality of the person with cancer, changed communication patterns, and changes to sexuality and intimacy. The impacts of these changed relationships included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women more frequently reported changes in the person with cancer and were more likely to mourn the previous relationship, while more men reported relationship enhancement.
The US Institute of Medicine (IOM) (2007a) report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, concluded that despite the evidence for the effectiveness of services, cancer care often fails to meet patients’ psychosocial needs. One possible reason for this failure is the tendency of cancer care providers to underestimate patients’ distress (Falomir-Pichastor et al., 2015) and to not link patients to appropriate services when their needs are identified (Institute of Medicine, 2007b).
The IOM report recommends a model for the elective delivery of psychosocial services with a five-step sequence of processes:
1. Identify each patient’s psychosocial needs.
2. Link patients and families to needed psychosocial services.
3. Support patients and families in managing the illness.
4. Coordinate psychosocial and biomedical care.
5. Follow up on care delivery to monitor the effectiveness of services and make modifications if needed.
Northouse et al. (2012) reviewed research which suggested that caregiver stress leads to psychological and sleep disturbances, changes in caregivers’ physical health and immune function, and reduced financial well-being. Interventions for caregivers of patients with cancer or other chronic illnesses can reduce many of the negative effects and improve caregivers’ coping skills, knowledge and quality of life. However, the authors concluded that these interventions are seldom implemented in practice. To help solve this problem, they recommended: the publication of standardized guidelines that address caregiver assessment, education and resources; the identification of ’caregiver champions’ in practice settings; the provision of referrals to established support organizations for caregivers (e.g., Cancer Support Community, Cancer Care); and collaboration among caregiving, professional and cancer-related organizations to advocate policy and practice changes for family caregivers.
Case Study of Intervention
It has been estimated that more than half the variance in psychosocial adjustment to breast cancer may be attributed to coping styles (Glanz and Lerman, 1992). Cancer patients who use coping strategies characterized as hopelessness/helplessness, fatalistic, pessimistic and anxious preoccupation report greater levels of stress than patients who use coping strategies characterized as active, problem-focused and confrontational (Greer et al., 1992; Schnoll et al., 1998). Patients using passive coping styles are more distressed than patients who confront their problems directly and seek solutions (Dunkel-Schetter et al., 1992). Active problem-solving coping has a positive effect on well-being, whereas passive, avoidant strategies had a relatively large negative effect in another study (De Ridder and Schreurs, 1996). The use of avoidant coping is predictive of poorer adjustment to breast cancer (Carver et al., 1993; Stanton and Snider, 1993; McCaul et al., 1999).
Meyer and Mark (1995) synthesized the findings of RCTs of psychosocial interventions with adult cancer patients using meta-analysis. A total of 45 studies reporting 62 treatment—control comparisons were included. Samples were predominantly white, female, and from the USA. Beneficial effect size ds2 were 0.24 for emotional adjustment measures, 0.19 for functional adjustment measures, 0.26 for measures of treatment- and disease-related symptoms, and 0.28 for compound and global measures.
2. Cohen’s d is a measure of an effect size determined by calculating the mean difference between two groups, and then dividing the result by the pooled standard deviation.
Carrying out research to evaluate interventions for cancer patients can be a highly complex and difficult project even for an experienced investigator. It is not something to be undertaken lightly. We illustrate here the design and testing of an intervention for cancer patients carried out at McGill University in Canada where ’NUCARE’ (a neologism formed from ’NUrsing, CAncer and REsearch’) has been proposed as a psycho-educational intervention based on cognitive behavioural principles (Box 21.1). The study provides an instructive lesson on the difficulties that can occur in running trials of this type. We discuss this trial in some detail to enable the key issues and complexities to be critically appraised.
Box 21.1 The NUCARE intervention
The Nucare intervention incorporates two areas: the enhancement of a sense of personal control and the learning of emotional and instrumental coping responses. The intervention was based on the McGill Model of Nursing, which stresses a partnership with the patient and family where situation responsive learning about healthy behaviours and coping can occur. The intervention may be effective for reducing patient distress, enhancing a sense of control and managing distressing side effects of treatment.
The model emphasizes individual strengths, the labelling of positive behaviours by providing feedback, working with the agenda of the patient, providing learning experiences at appropriate, teachable times, considering the individual as a member of a family or larger social system, and a focus on good coping. The Lazarus and Folkman conceptual model of coping guided the development of Nucare.
The NUCARE intervention emphasizes training in seven skills:
Problem-solving techniques: Each patient was taught a specific series of steps in problem solving. Goal setting: Setting graduated and attainable goals provides a means of accomplishing tasks that provide a sense of perceived personal control. Cognitive reappraisal: Patients were taught to be more cognizant of and identify those thought patterns that contribute to negative mood. The awareness that patients could have control over their thoughts was often sufficient to provide positive change and improved mood. Patients practised identifying facts, thoughts and feelings. Mindfulness. Relaxation training was a second step in problem solving (i.e., taking time out to develop a different perspective). Progressive muscle relaxation with guided imagery was used with an audiotape for home use. The effective use of social support: Learning how to use ’I’ statements, develop assertive behaviours and determine the adequacy of one’s own social support network. The use of resources: A comprehensive booklet outlining all the resources available to patients with cancer and their families within the hospital setting and in the wider community was presented.
A published version of the workbook is entitled Mastering the art of coping in good times and bad (Edgar, 2010).
Source: Edgar et al. (2001)
Edgar et al. (1992) tested the effects of the Nucare intervention in an individual and group format.
The Nucare intervention focuses on enhancement of a sense of personal control and emotional and instrumental coping responses (Edgar et al., 2001; Rosberger, 2002). There is evidence suggesting that the intervention enhances QoL and reduces distress in patients with cancer (Edgar et al., 1992; Allison et al., 2004; Vilela et al., 2006). The intervention is based on the coping model and Ways of Coping Questionnaire of Folkman and Lazarus (1988).
Edgar et al. (2001) designed an RCT to compare the relative effectiveness of both an individual and a group presentation of the Nucare intervention, along with an unstructured peer support group (which attempted to control for the non-specific effects of group process) and a no treatment arm, which serves as a no-treatment ’control’.
The latter basically informs the investigators of the outcome of not giving any intervention. This feature can be ethically controversial because, if the interventions are effective, then the control participants have been deliberately denied beneficial health care.
Edgar et al. stated that they wanted to investigate the outcomes of functional well-being and emotional distress on patients over the course of one year. Participants with breast or colon cancer were assessed four months after diagnosis, and every four months for a total of four evaluation points. Edgar et al. (2001) hypothesized that the effectiveness of Nucare presented in group format on psychosocial outcomes would be equal to or better than Nucare presented in a one-to-one format, and better than both the unstructured support group and the no treatment arm for breast and colon cancer patients. They investigators also hypothesized that patients who received the Nucare intervention would achieve greater improvements in emotional distress and functional well-being than patients in the control arm.
The patient sample was recruited from the Department of Oncology of the Sir Mortimer B. Davis Jewish General Hospital, Montreal, Quebec, Canada. Edgar et al. were granted access to the Tumour Registry of the hospital, where all cancer patients were registered; consequently, they could report on the entire population from which the sample was drawn. [A definite advantage compared to many similar studies.] All patients meeting the following criteria were invited to participate: (1) at least 18 years of age; (2) able to speak and read English or French; (3) accepting medical treatment and follow-up at the study site; (4) diagnosed with breast or colon cancer within the previous four months and about to begin treatment on or off a clinical trial protocol. They limited their focus to breast and colon cancer patients to increase the homogeneity of the sample and hence the power of the analysis, while studying two different cancer sites.
The RCT design contained four arms (i.e., treatments or procedures). All patients from the Tumour Registry were contacted if they met criteria (1) and (4). Research assistants then determined whether criteria (2) and (3) were satisfied before continuing the recruitment process. The physicians of the potential participants were notified of the study. They respected the wishes of a few physicians who stated that there was no need for the study for their patients. All other patients were contacted by a research assistant, oncology nurse or physician to begin the process of recruitment. [Note in the following that the Edgar et al. referred to ’subjects’ instead of ’participants’, indicating a somewhat diminished status for the patients.] After the ’subjects’ received a complete description of the study, they obtained written informed consent. The authors go on to state that the ’procedures followed were in accordance with the ethical standards of the Research Committee of the Hospital’ [This statement suggests the possibility that no formal application may have been made to an Institutional Review Board for ethical approval. Concerning, if true.] Following the baseline interview:
patients were randomized into one of four arms using a block randomization procedure. The four arms consisted of (1) individual Nucare; (2) Nucare presented in a group format; (3) a supportive, unstructured group; (4) a no intervention control arm. When the randomization envelope specified either the group Nucare or unstructured support group arm, the subsequent eight subjects would be allocated to that arm to facilitate the formation of a group of sufficient size within our estimation of a reasonable time frame (a mean of six months following the baseline interview). (Edgar et al., 2001: 292)
All patients were interviewed and completed questionnaires to measure well-being and psychological distress four times: at baseline four months from diagnosis prior to the intervention; and subsequently every four months up to one year. The five-session interventions were completed within a six-month period following the first data collection point.
The research assistants for the study were two nurses and a social worker. They conducted the four interviews at the study centre or occasionally in the patient’s home. The questionnaires were completed by the patient in the interviewers’ presence and demographic data were collected in an open-ended fashion. The ’subjects’ met with the same interviewer over the four data collection points. The intervention educators were a nurse, two social workers, and a psychologist, who were all experienced in individual and group work with cancer patients. Two educators led the individual and group Nucare sessions and two others led the unstructured support groups.
In these last two sentences, we learn of a potentially fatal flaw in the study design. Different treatments were administered by different personnel. Therefore, there is no way of knowing whether any differences between the treatments administered by the different personnel are due to the characteristics of the treatment per se or to the characteristics of the personnel delivering those treatments. The investigators go on to say:
We planned the groups in the present study to be a combination of an informal classroom-style format, with an educator as group leader and facilitator, in conjunction with the interactive group process that is found to develop in peer support groups. Patients were encouraged to share their own experiences in the peer support groups and to use the skills under discussion to work on their own and others’ concerns in the Nucare groups. (Edgar et al., 2001: 293)
The Nucare intervention was as described in Box 21.1 except it left out the Mindfulness component.
We turn now to the measures taken. Interviewers blind to what intervention arm the ’subjects’ belonged to conducted the following measures: (1) Demographic and Disease Data: age, gender, education, marital status, religion, hours of paid work per week, disease, staging, treatment information, and disease severity according to the three-stage nuclear grade system (good, medium or poor); (2) Profile of Mood States (POMS). Emotional distress was measured by the POMS. A five-point response ranging from 1 (not at all) to 5 (extremely) was used for items on six sub-scales: depression, anxiety, confusion, anger, fatigue and vigour; (3) The Functional Assessment of Cancer Therapy (FACT) scale, measuring actual and perceived impact in five domains — functional, physical, social and emotional well-being, the physician—patient relationship and a global assessment of adjustment with items rated on a five-point scale. The first of the reported findings related to the sample characteristics:
During the two-year accrual period there were just over 1200 breast and colon patients registered with the Tumour Registry of the hospital. We are able to report on the entire cohort of patients diagnosed with breast and colon cancer during the accrual phase, in marked contrast to most published studies which rely on referrals from the health care team or a public relations approach. Five hundred and thirty-three of the 1200 patients were ineligible due primarily to the severity of their illness or difficulty comprehending the project, leaving a possible total of 667 eligible subjects. We were able to recruit 225 of the remaining 667 for a response rate of 33 percent. Four hundred and forty-two patients declined to participate including a small number to whom we were denied access by their physicians. Of those who declined, 40% were not interested in the study, 20% were not comfortable communicating in English or French, 20% felt they were too ill to participate, 10% felt they were too old, and 10% lived too far away to travel to the study site. There were no significant ANOVA differences between the participants and those who declined to join according to age or gender (for colon cancer patients). The known participation and accrual rates in oncology clinical trials range between 3 and 14 percent. (Edgar et al., 2001: 295)
Aspects of this description are concerning. Only 225 patients from a total of more than 1,200 patients were recruited. That is <18.75% of patients on the Tumour Registry. If we accept that only 667 patients were eligible, that is still only 33.7%, almost exactly one-third. We are given, in round numbers, reasons for non-participation, but these numbers are high, and one is left wondering how well the study findings would generalize to the entirety of the patient population. Unfortunately, there is no way of knowing because these participants were self-selected.
An alternative method of evaluating interventions is to carry out an observational study in which patients are offered a range of treatments and are free to choose which one they prefer. The results that are obtained may be closer to what happens in the ’real world’.
Another concern regarding the details of the sample is the low number of male patients. Only 41 males were recruited to the study along with 184 female patients. This gender split is destined for serious problems, as we shall see below. It would have been better to have dropped all of the males out of the study or gone the ’extra mile’ to recruit males in much larger numbers. We are informed also that:
Thirty-six (n = 19 breast; n = 17 colon) patients withdrew over the course of the year: Nine patients were too ill or died, 5 moved away from the area, and 22 were not interested in following the study to its year completion. There were no significant differences in numbers of subjects, reasons for withdrawal, or in demographics between dropouts and participants among the four arms. The dropouts were distributed across the treatment groups from Nucare individual, Nucare group, unstructured group and control arm as follows: 9, 9, 10, and 8. (Edgar et al., 2001: 296)
Thirty-six withdrawals is 16% of the total sample, quite a high proportion. We are not informed about the gender of the colon patient drop-outs, but if the majority of the 17 was male, then the sample size of male colon patients will have been too small to analyse, which transpired to be the case.
The reported results were outcome differences over one year for the POMS and FACT scales. The results suggested that breast cancer patients who received individual Nucare had made the most improvements in their well-being and adjustment as measured by the FACT scale. These positive effects were maintained over the one year of the study. Contrary to the investigators’ expectations, individual, face-to-face Nucare was found to be more effective at every time point than group Nucare, unstructured group or no-treatment arm in improving functional, physical and general well-being, and in the domain of depression at 8 months, vigour at 12 months, and emotional well-being at 8 and 12 months. The authors state:
Before the analyses began, we became aware that we had failed to create and sustain functioning groups of patients with colon cancer within the constraints of the research design; therefore we had a situation where there was no clear treatment to evaluate in the group arms. We were distressed to find that patients with colon cancer did better in the no treatment arm than in either of the two group arms. The attendance of those patients with colon cancer for the two group conditions was significantly lower (M = 2.5) than for individual Nucare (M = 4), and clinically, the educators informed us of the reluctance expressed by the subjects who had been randomized to the group conditions to participate. (Edgar et al., 2001: 300)
Alarm bells are ringing loudly at this point. The drop-out rates for the colon groups were very high: 6/16, 10/21 and 4/21 for the group Nucare, support group and control interventions, respectively. These rates provide interesting information. The support group in particular was not greatly supported by the colon patients with nearly half leaving before the end of the trial. Were these mainly males? The many empty cells in the results table that presented the outcomes for colon patients suggests that there were no male colon patients left to analyse in these cells. This was a disastrous feature of the trial, as was the finding that a no-treatment control condition did better than the two group intervention arms for the colon patients.
The study results were egregious for the Nucare intervention as the patients with colon cancer did not benefit from either the individual or group arms. They ’voted with their feet’ in withdrawing in high numbers from the study. In the debriefing sessions with the educators, the investigators learned that the men with colon cancer in the individual sessions seemed to ’build a protective barrier around them to prevent having to engage in learning coping skills. There was a consensus that the men gave “lip service” to the concepts under discussion but did not practice the skills away from the sessions’ (Edgar et al., 2001: 300). Colon cancer patients of both sexes were dealing with a variety of physical problems, such as dietary issues and diarrhoea, that interfered with any interest they might otherwise have had about their psychosocial concerns. The educators reported that the mixing of males and females in the colon cancer groups inhibited the ’subjects’ from sharing their thoughts. There were 20 groups during the study but these were all mixed sex groups due to the small numbers available. The lack of choice in receiving group or individual sessions may also have been a deterrent to participation, especially in the colon patients.
The authors were fully cognizant of many of the problems with this study. They acknowledged that they were attempting two contradictory goals for the groups within an unrealistic time frame: to foster group processes and social support, and to present the Nucare intervention in a didactic way. They acknowledged that they were unable to create a naturalistic setting for the groups and were aware of the gap between the constraints of a randomized clinical trial and the real world where patients decide for themselves whether or not to participate and when. A ’real-world’ evaluation of the intervention may well have obtained very different results and, quite possibly, results that were more in line with the investigators’ predictions. Real-world and RCT studies often do produce different findings.
The authors point to problems caused by the large variances in the baseline scores and the mean changes. When combined with the small samples, the high variances at baseline became a fatal flaw. Had Edgar et al. limited recruitment to patients who were clinically distressed at baseline, there would have been scope for more statistically significant changes attributable to the interventions. The possibility of an unknown systematic bias from the participation of 33% of the invited sample may also have existed as patients self-selected themselves into the clinical trial.
Edgar et al. (2001) are to be applauded for publishing their study in all humility under the title ’Lessons Learned’. In so doing, other investigators can learn from their mistakes and the quality of future trials can be raised. It is lamentable that poorly designed trials or trials that produce null results or results contrary to hypotheses are so often manipulated to ’make a silk purse of a sow’s ear’ or remain in the file drawer of unpublished studies.3
3. In Chapter 24, we encounter another flawed RCT known as the ’PACE Trial’ wherein the authors refuse to acknowledge the problems with the trial and learn lessons from their mistakes, in the nature of good science, bringing potential harm to patients in the process.
Jacobsen (2009) discussed reasons why evidence-based psychosocial care for cancer patients is not more widely promoted and adopted by clinicians. First, there are inconsistent findings, attributable, at least in part, to differences in demographic, disease and treatment characteristics of the samples, and the type of outcome assessments employed. Considerable variation also exists across studies in the number and content of sessions for interventions that share the same name, e.g., relaxation training. Inadequate reporting of study methodology and lack of transparency in reports of trials are problems for anybody wishing to replicate an intervention (Marks, 2009). Newell et al. (2002) found that only 3% of trials provided sufficient information to permit an evaluation of ten indicators of study quality.
Methodological issues are common. For example, the majority of studies fail to account for patients lost to follow-up in the outcome analyses. This means that it is impossible to calculate with accuracy the odds ratio for a treatment compared to the control condition. Seitz et al. (2009) systematically reviewed psychosocial interventions for adolescent cancer patients. The authors concluded that:
Taken together, the findings point out that there is a lack of intervention research in psycho-oncology with adolescents. So far, there is only limited evidence for the effectiveness of psychosocial interventions to improve coping with cancer-associated problems in adolescent patients. … In order to establish more conclusive results, larger samples and interventions particularly designed for adolescent patients ought to be studied. (Seitz et al., 2009: 683)
As we have seen, much of the evidence concerning the alleged benefits of psychological interventions (reviewed in Chapter 20) remains unconvincing. Coyne and Tennen (2010) examined four widely accepted claims in the positive psychology literature regarding adaptational outcomes among individuals living with cancer. These claims from positive psychology were found to be wanting. Coyne and Tennen (2010: 16) noted:
incoherence of claims about the adaptational value of benefit finding and post-traumatic growth among cancer patients, and the implausibility of claims that interventions that enhance benefit finding improve the prognosis of cancer patients by strengthening the immune system. … We urge positive psychologists to rededicate themselves to a positive psychology based on scientific evidence rather than wishful thinking. (Coyne and Tennen, 2010: 16).
Harding and Higginson (2003) carried out a systematic review of interventions for carers of patients using home cancer and palliative care services. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three) and group work (ten). Of these, nine were delivered solely to carers, of which only six had been evaluated — two of these with an RCT, three using a single group methodology and one using facilitator feedback. The authors reported a lack of outcome evaluation designs, small sample sizes and a reliance on intervention descriptions and formative evaluations. They suggested that methodological challenges may mean alternatives to ’pure’ RCTs should be considered. ’Fetishization’ of the RCT has been one obstacle to good quality evaluation research into interventions for cancer patients and their informal carers.
The current prominence of concepts such as ’being positive’, ’fighting spirit’, ’post-traumatic growth’ and ’benefit finding’ in the popular literature about cancer has little or no basis in science. A more sceptical, evidence-based approach is necessary if we are to avoid the dissemination of inaccurate information and the raising of false hopes.
Bibliotherapy and Self-Help Books
Bibliotherapy is a self-administered treatment using text from books and other written content to improve psychological well-being. For many people, bibliotherapy is the only game in town. Bibliotherapy has proven to be an effective treatment for a variety of mental health problems (McKendree-Smith et al., 2003; Gregory et al., 2004; McKenna et al., 2010). A few studies have investigated bibliotherapy among patients with cancer. Most recently, Roberts et al. (2018) carried out a randomized controlled trial to examine the efficacy of the Nucare intervention (described above) as a bibliotherapy to enhance empowerment and quality of life and to reduce distress in patients with cancer.
Eighty-nine adult patients with heterogeneous cancer diagnoses, mean age of 54 years, 77.5% female, were randomized to receive bibliotherapy treatment for six weeks or a control condition. Participants completed questionnaire packages at baseline, six weeks post baseline assessment and ten weeks post baseline assessment. An increase in empowerment scores (main outcome) and QoL and a decrease in distress in the bibliotherapy group from pre-intervention to follow-up assessment differed significantly from the respective scores of the control group. The authors concluded that bibliotherapy has the potential to be a cost-effective and accessible minimal intervention to address the psychosocial needs of patients with cancer. Evidence-based bibliotherapy has the potential to empower patients with effective methods, reduce the burden on resources, and enhance the immediacy of psychosocial services in a cost-saving manner.
Influence of the Internet
As internet access increases throughout the world, the internet is a major source of health information for patients and their families, particularly for serious life-threatening conditions such as cancer. Eysenbach (2003) explored the impact of the internet on cancer outcomes. Eysenbach distinguished four areas of internet use: communication (electronic mail), community (virtual support groups), content (health information on the World Wide Web) and e-commerce. Eysenbach estimated that, in the developed world, 39% of cancer patients were using the internet, and approximately 2.3 million persons living with cancer worldwide were online. These figures will be vastly higher today, with perhaps 50% of the global population online. Recent systematic reviews of online support have yielded mixed outcomes (Hong et al., 2012; Kuijpers et al., 2013). A trial by Bantum et al. (2014) reported significantly greater reductions in insomnia and greater increases in vigorous exercise and stretching compared to controls (based on self-reports).
Beekers et al. (2015) hypothesized that dissatisfaction with health care information provided by professional providers may be one driver for cancer survivors seeking health information on the internet. All individuals diagnosed with endometrial or colorectal cancer between 1998 and 2007 or lymphoma or multiple myeloma between 1999 and 2008 in Eindhoven were invited to participate; 4,446 cancer survivors received questionnaires including the 25-item European Organization for Research and Treatment of Cancer Quality of Life Group Information questionnaire and the Hospital Anxiety and Depression Scale (HADS; Zigmond and Snaith, 1983).
Beekers et al. found that patients having anxious or depressive symptoms or both were less likely to have experienced helpfulness in the received information. Having depressive symptoms or having both depressive and anxious symptoms were negatively associated with satisfaction with information, and having depressive symptoms was negatively associated with disease-related internet use.
Alsaiari et al. (2017) evaluated the content and quality of health information on adult kidney cancer websites found on Google, Yahoo and Bing using two terms: ’kidney cancer’ and ’renal cell carcinoma’. They reviewed the top 30 hits consisting of 35 websites. Content was assessed using a 22-item checklist adapted from the American Cancer Society. The average website had 16 of 22 content items, while 6 websites fulfilled all 22 items. The average website readability was at the ninth-grade reading level. However, some websites were difficult to read without a high school education.
As internet access increases throughout the world, the internet will play an increasing role as an information source for people with illness. There are many excellent websites provided by governmental and third-sector organizations offering information based on the best scientific evidence. Regulation is needed to remove quack websites that exploit people with offers of ’snake oil’ placebos, phoney services and fake cures.
1. Research which uses sensitive and robust designs, both quantitative and qualitative in nature, is required to understand illness experience at different stages of diagnosis, treatment and survival.
2. Research on interventions for patients and caregivers is also needed to improve services at different stages of the illness, especially the re-entry phase, which has been somewhat neglected.
3. Few instruments exist for evaluating psychiatric illness in children and adolescents, older adults, individuals with cognitive impairments, and individuals from different ethnic and cultural groups, and these gaps need to be filled.
4. More research is needed on methods to enhance critical thinking and scepticism about ’quack science’ in medicine and psychology.
1. Cancer occurs when cells keep dividing and forming more cells without internal control or order. This cell growth is known as a ’tumour’ or ’neoplasm’ and can be benign or malignant.
2. Approximately one out of every two men and one out of every three women have cancer during their lifetime.
3. Risk factors for cancer are many and various, and include genetic, environmental, viral and behavioural toxins, such as smoking and sunbeds.
4. Diagnosis may trigger psychological and existential threat, leading to an outpouring of emotions.
5. Treatments aim to cure cancer, control it, or treat its symptoms. The type of treatment depends on the type of cancer, the stage of the cancer, and individual factors such as age, health status, and the personal preferences of the patient and his/her family.
6. Most patients prefer shared decision-making, wherein the professionals engage the patient in making treatment choices.
7. The four major treatments for cancer are surgery, radiation, chemotherapy, and biological therapies such as hormone therapies (e.g., tamoxifen) and transplant options (e.g., with bone marrow or stem cell therapy).
8. The prominence of concepts such as ’being positive’, ’fighting spirit’, ’post-traumatic growth’ and ’benefit finding’ has little or no basis in science. A sceptical, evidence-based approach is required if we are to avoid dissemination of inaccurate information and false hope.
9. Evidence-based bibliotherapy has the potential to empower patients with effective methods, reduce the burden on resources, and enhance the immediacy of psychosocial services in a cost-saving manner.
10. The internet is playing an increasing role as an information source for people with illness. Regulation is needed to remove fake services and information.