| HOME | HELP | CONTACT US | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Correspondence: Richard T. Penson, MRCP, M.D., Instructor in Medicine, Hematology-Oncology, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
Access and take the CME test online and receive one hour of AMA PRA category 1 credit at CME.TheOncologist.com
LEARNING OBJECTIVES
Top
Learning Objectives
Abstract
Presentation
Dialogue
Discussion
References
After completing this course, the reader will be able to:
|
ABSTRACT |
|---|
|
TopLearning ObjectivesAbstractPresentationDialogueDiscussionReferences |
|---|
Three invited patients attended rounds and told their compelling stories; these each effectively demonstrated their fight as cancer survivors. Much of the strength that they displayed came from the different types of support they each received, and the invaluable role of the medical team. Each shared a very positive experience with ‘The Wellness Community,’ in Boston. The article discusses issues of support and the role of formal support groups. Types of support intervention, the impact they have on quality of life and survival are reviewed.
Key Words. Oncology • Support • Psychosocial • Communication • Care • Connection
|
PRESENTATION |
|---|
|
TopLearning ObjectivesAbstractPresentationDialogueDiscussionReferences |
|---|
Facilitator: Today truly is a unique "Rounds," because it brings us three extraordinary cancer patients who are going to talk to us about their perspectives on the care-giver-patient relationship.
Patient A: It is an honor to be able to share my feelings and tell the story of what I have gone through as a cancer survivor. I was diagnosed with non-Hodgkin’s lymphoma after lymph node resection, which was a very traumatic experience. I then had the opportunity to come to Massachusetts General Hospital (MGH) and met my present oncologist. Only then did I start to trust, and my relationship with my doctor started to be extremely important. I went through 6 months of chemotherapy and then two courses of radiotherapy. After the radiation I underwent antibody drug therapy and according to my last set of scans, I’m in remission and I feel really good and hopeful.
Patient B: I was initially diagnosed in my 30s with a very simple (indicated punctuation, with her hands in the air) breast cancer, just a couple of small tumors, with no lymph node involvement. A partial mastectomy was performed with immediate reconstruction and adjuvant chemotherapy followed by radiotherapy. Fourteen months later, during an episode of a bizzare unrelated stomach ache, we found out that the cancer had metastasized to my liver and lungs, and as a result I underwent several cycles of chemotherapy. I had actually undergone more than 30 cycles, none of which had worked and I had decided to stop chemotherapy because I thought I was really sacrificing my quality of life. I felt that I would rather live my time with relatively few symptoms than suffer with all the additional symptoms of chemotherapy. So I went off it. Six months later I wound up going back on chemotherapy because the symptoms became so acute that I had pain, nausea, fatigue and all of the other things associated with liver metastases.
| I felt that I would rather live my time with relatively few symptoms than suffer with all the additional symptoms of chemotherapy.
|
I went onto hospice care after an emergency crisis. I had started to bleed internally and it couldn’t be controlled. The doctor had called my family to say I had just a few hours to live, despite the fact that 2 weeks previously I had been told that the metastases in my liver were actually shrinking with chemotherapy. Fortunately I am now better, but back on chemotherapy.
Patient C: I was diagnosed about 6 weeks after investigative surgery, because I was losing the feeling in my face and had severe numbness and loss of strength in my arm. The outcome of that surgery was not reported to me until about a month afterwards and probably wouldn’t have been, had it not been for a number of contacts and friends I had at another hospital. I never thought that I could ever have cancer. I was a young, healthy female training for a triathlon. I hadn’t done drugs, I had never smoked, I wasn’t your typical cancer patient. The pathology reports that came out were conflicting and it was my own doctor that finally reported a diagnosis of malignant peripheral nerve sheath tumor with a question of melanoma. This was the first time I really appreciated that I might have cancer. I was referred to the MGH. I loved my doctors at the hospital. This time every test that was performed had an outcome that was explained to me.
I subsequently had a second round of surgery to remove more of the tumor from the nerves, followed by radiation 5 days a week (which was much more of a tougher experience than I had imagined). I am now followed-up every 10 weeks with a full body MRI, CT, spinal tap, blood work, and breast MRI and will do so for the next 3 years or so. I think the doctors I have met are incredible and today I am in remission. I am very happy about this and the greatest piece of news is that if it comes back I have enormous hope, especially with the support of the doctors I have here. I am very lucky. I feel very lucky.
|
DIALOGUE |
|---|
|
TopLearning ObjectivesAbstractPresentationDialogueDiscussionReferences |
|---|
Patient A: After my surgery I went into the recovery room and people looked at me like something was definitely wrong. It was the way they looked at me. The way they tilted their heads as I left, saying "Goodbye Mr. A. Good luck." That worried me. I knew something was not right and that feeling stayed with me up until my follow-up appointment where I was to have my stitches removed. It was at this appointment I was notified that the lymph node was cancerous.
But it was the way I was told that really shocked me. I was in the room all by myself, my wife was in the waiting room and the doctor came in and said, "Your lymph node is cancerous. But that’s okay, the guy down the street, he’s still walking his dog," and with that, left the room. I sat there all alone. I didn’t know whether to cry, to jump up, or to punch him in the face. I was terrified. My wife finally walked in and I ended up telling her, "Kate, I have cancer" and immediately we both started crying. The doctor returned five minutes later.
Now that’s definitely not the right way to tell someone they have cancer. The right way for me would have been to ask my wife to accompany me and for the doctor to talk to us both. It just seemed like there was no regard for me as a human being.
Patient B: I was initially investigated when my left nipple started to discharge, a little at first and then heavily. At the time I was told there was a possibility it could be cancerous but they needed to operate. They prepared me for the worst. I called my mother 2 days before to say, "Well, I’m going in for some procedure." But it ended up being less sinister than initially expected.
| I hadn't done drugs, I had never smoked, I wasn't your typical cancer patient.
|
Six months later, however, I’m back at home with my mother and I find a lump. The doctors biopsied 6 months after my discovery and I was then told, "It’s ductal carcinoma in situ." Just like that. It sounded like a foreign language. Followed by, "Basically it’s not quite cancer because it’s all contained, but there are a few little places where it has kind of invaded the other areas, so it’s basically like you have champagne grapes in one area and an avocado pit in the other." I simply didn’t know how to take any of it. He told me he would let me know the results of my lumpectomy, but I ended up calling him for a week before I got any sort of response. I then went to him with a list of questions, which he looked over and responded to with a "yes, no, check, check, check..." answering in the briefest possible way and that was it. So I believe it’s really important to treat your patients like people and not procedures, and it’s amazing how many procedures we have to go through. As medical professionals you’re used to receiving data, but for us as patients, each test, each diagnosis, each biopsy is an entire experience and waiting for the results is the most excruciating thing in the world. It’s emotional physics, an absolute roller coaster. But fortunately I came to work with the most tremendous medical professionals who treated me with a great deal of respect and compassion.
Facilitator: What were some of the hardest moments during the aftermath?
Patient B: I’ve had to recreate meaning in my life, no matter how long or short that life is going to be. Sometimes my worst experiences have been to just get through another minute of my life because of treatment, because of fear, because of pain. But somehow you make it. Often heroically, often not so heroically, more like an adolescent, and then you feel defeated because you feel you’ve reverted back 20 years.
The worst decision for me had been to go off chemotherapy against everybody else’s wishes. I had just had enough, it didn’t seem to be making a difference, it wasn’t shrinking the tumor. I had lost my hair, and that was a very big deal for me. I went to the hairdresser and said, "shave it off," which broke his heart I could tell. Yes, I think my worst moments were on chemotherapy. I was just so unhappy and miserable and felt that if I’d only had a few days to live I’d rather live them feeling some modicum of being okay, compared to suffering on treatment.
Another tough thing that happened was a few weeks ago. They found a white fluffy mass on my CT scans. I asked, "Well, what’s the fluffy mass?" He said, "Well, you know typically white fluffy masses are cancer." I thought to myself, I’m only just getting back to a reasonable life, going to New York every week, having a good time, loving my job, how can I possibly embrace this? How do I make the glass half full and continue living my life. I’d again entered the waiting game, back in the valley of not knowing.
Patient C: I think the hardest thing for me during this whole process was the radiation. It was brutal. I expected radiation to be a walk in the park and that chemotherapy was the land of the ugly and miserable. But the radiation was endless. It was the longest 6 weeks of my life and I wasn’t very pleasant through it. Not that I feel compelled to always be nice, but I was pretty miserable even for me. I didn’t have the energy to do what I wanted and didn’t know how to manage that.
Facilitator: You’ve all touched on issues that have affected you adversely. What about the positive aspects of your experiences?
Patient A: I really appreciated the staff at the Hospital first and foremost. They were the best group of people I had ever met. I laughed with them, we joked, and had fun. I get through a lot of things by joking. I’m a fighter. I am a survivor.
Patient B: Well firstly, a lot of my support came from friends and family. I found myself lost in terminology and that worried me. So I started researching cancer on the Internet, looking for information in books and fortuitously there is a lot of information about breast cancer. Family members started similar searches and many of the doctors at the Hospital actually sat down with me, explained things simply and reassured me that I wasn’t a statistic. Now I make a point of getting every biopsy report and sitting with the doctor to go through it. She has been incredibly supportive.
| I've had to recreate meaning in my life, no matter how long or short that life is going to be.
|
Patient C: When chemotherapy was proposed I was told I needed to consider having some eggs removed and frozen. I hadn’t officially been diagnosed with cancer and yet it was all so overwhelming, "cancer, eggs, eggs, cancer, babies, a husband!" I’m not married you know. All of these issues seemed daunting to me. But fortunately I had the support group and we found a sense of humor through all of it. I also feel like I have a great team at the Hospital, they take care of me and I trust them and their decisions. They give it to me straight, whatever straight is. That’s the best. I mean, when they said spinal tap, I said, "How big is the needle. Is it twelve inches?" because that’s what I’ve heard. "No," he said, "It’s only seven." "Great," I said, "Let’s go." I know they’re here and that research is being done all over the world that relates to cancer. I also find a lot of therapy in the poetry I write. I’m running again and have gained weight, but it’s all happening at a much slower pace than I had ever anticipated. I’m not out there kicking 5 miles by any stretch of the imagination. In fact I’m choking at two, but one thing I learned from the group, through education, was that chemotherapy wasn’t so bad.
Facilitator: Could you tell us more about how the support groups have been helpful to you and how you got in touch with these organizations?
Patient A: Well, I actually found an advert in the chemotherapy suite for The Wellness Community. There were many different types of programs available, and I desperately wanted to get involved in a men’s group. The group helped me find the right people to talk to. It allowed me to experience anger in a different way. It made me understand what living with cancer was all about, especially since I was meeting with people who had many different types of cancer. I saw how each person dealt with things differently. But when I talked about anger, someone would know what I was talking about, and when I spoke of the ‘waiting game,’ they again knew what I was talking about. The Wellness Community really helped me get through a lot of my anxiety and depression, and it’s free. That’s good. Free is good. It’s a wonderful organization.
Patient B: As patients, we feel we should be strong. But, you do break down. At these groups, you see people be strong, but you also see them disintegrate right in front of your eyes as they attempt to cope. But then, you see this transition to greater strength again. What this helps you to do is redefine concepts of weakness and strength, because it’s at your weakest moments that you really learn how to cope and grow stronger. The great thing is, that you’re in a safe environment where you can discuss your weakest moments. This is often difficult to do with your family or a medical professional. When you’re in a group you get the assurance of a nod, that makes you feel, if not entirely better, at least okay about yourself. You see people go through ups and downs, and often when you don’t feel like there’s an up, the group helps you find it.
Patient C: Everyone expects cancer patients to look gray, to be bald, and to look miserable. I was none of those things except miserable inside, but you wouldn’t have known that to look at me. Deep down, however, at the bottom of my toes, I felt hopeful. But, I couldn’t always access it. I think going to The Wellness Community definitely gave me a place to say, "You know, I may look great to the rest of the world, but it’s only because I can wear lipstick!" I did feel miserable, but they educated me. I felt I really learned a lot about different types of cancer. I had no idea about how differently cancer behaves. Other people were still living and loving life in a normal way despite cancer. We discussed fear and what it meant to really be afraid, and also how to live with a new set of boundaries and a new set of rules. It doesn’t have to be bad. You are definitely tried. Other people are also tested in their lives but in other ways.
We were also forced to address issues of death. Typically, we didn’t spend much time discussing death. But then a new participant joined the group; she was calm and very serene. She was clear about what her next steps were and she knew she had a very limited time and her strength gave us a lot of strength.
Patient A: Another important point is that we, as patients, could recognize when someone didn’t want to talk. We would make sure that we could get on the telephone that night and talk to that person. Sometimes the loved one or caregiver at home would find it hard to express, or find out, what was going on. We made a point of staying in touch when things got bad and equally, when things were good, and that’s how powerful the group could be. I’m really glad to have been part of that experience.
Patient B: Love was something else we discussed in our group. I had this big epiphany one day about love. There is a kind of love that comes naturally to you and it really just flows from you, you feel it, it’s easy. Then there is the kind of love that is hard worn. The kind of love that expands your definition of what you think you can love. For me, it’s been trying to love this body: scarred, impaired, and self-destructive. To find ways to re-love myself has been one of the hardest trials in all of this and something I wanted to address at the sessions.
| When you're in a group you get the assurance of a nod, that makes you feel, if not entirely better, at least okay about yourself.
|
Facilitator: I’m not sure that all patients could speak to us as you have all done today. But clearly, the support of the groups you’ve engaged with have helped you make some meaning of this and express your experiences. It makes you appreciate how such a basic skill can be therapeutic and should be encouraged. In a group, people really appreciate that you’re sharing with them as a fully-fledged human being. I think this should embolden and empower us to be direct, no matter how painful what we have to say is. To share the joys. To just be there, that’s what it’s about, just being there.
We wish to extend our thanks to the three extraordinary patients who made this round possible. It was a privilege to have all three of them together today and hear their inspiring stories... Thank you.
|
DISCUSSION |
|---|
|
TopLearning ObjectivesAbstractPresentationDialogueDiscussionReferences |
|---|
‘...No man is an island, entire of itself...any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.’—John Donne [1]
A ‘positive attitude’ is something we have all been encouraged to exercise. The mind-body connection is obvious, but whether maintaining a positive attitude achieves more than merely a positive attitude is a contentious issue. Preliminary evidence suggests that our mental attitude effects patients’ quality of life, but can it influence the progression of cancer or survival [2]? Does stress or a ‘helpless-hopeless’ attitude influence our immune system enough to effect the outcome of cancer? Seeking support is a natural response to stress [3]. By engaging with others in similar difficulty or by participating in educational or behavioral activities, it is believed that patients may develop better coping and adaptive mechanisms to the sequelae of cancer and its treatment [4]. This paper will look at the evidence and address the question of how efficacious professionally led psychotherapeutic intervention is with respect to the individuals and their disease. The wonderful work of non-profit support groups such as The Wellness Community [5] will be highlighted as a means of demonstrating the activities and opportunities to patients.
Mechanisms of Support
Efficacy of psychosocial intervention continues to be investigated primarily because of the difficulties in assessing the nature and content of intervention (psychotherapy encompasses a wide variety of therapies), the subjective nature of the experience, variation in the training and ability of therapists, their relationship with the patient, and the limited validity of the methods of assessment [6]. Historical studies dating back to the 1950s and early 1960s explored the links between psychological variables and cancer outcomes, but were thwarted by poor design (non-randomized), conduct (non-random loss of data), and analysis and were not controlled for significant confounding factors, such as performance or socioeconomic status [7]. Subsequent studies responded to these challenges, but reflected an era dominated by subjective outcome measures (Quality of Life), rather than outcome measures that evaluated the clinical utility of interventions.
The first, formal measure of mental adjustment was a patient self-rating questionnaire called the ‘Mental Adjustment to Cancer’ scale [7]. Greer and colleagues examined a group of women with non-metastatic breast cancer treated by mastectomy and post-operative radiotherapy [8]. Psychological parameters were measured 3 months after surgery at structured interviews, and psychological responses were grouped under four categories: A) ‘Fighting spirit,’ in which patients adopted an optimistic attitude seeking to conquer disease; B) ‘Denial,’ patient denied the diagnosis or distanced themselves from the implications of the diagnosis; C) ‘Stoic acceptance,’ in which patients accepted the diagnosis but adopted a fatalistic attitude, and D) ‘Helplessness-Hopelessness,’ where patients were overwhelmed or preoccupied by thoughts of death and dying. Patients had been matched in terms of disease and demographic characteristics, and those who had adopted a ‘fighting spirit’ or ‘denial’ attitude were more likely to be alive and disease free than patients who adopted a more ‘stoic’ or ‘helpless-hopeless’ attitude [9]. However, there are significant limitations to the study. Namely, there were only 57 patients at follow-up, there were no adjustments made for important prognostic variables (such as lymph node status) and that again, outcome measures did not include a validated measure of quality of life [8]. A confirmatory study from explicitly skeptical investigators replicated the original study with a more formal assessment system and found that at 5-year follow-up, those who scored highly for depression had a significantly reduced survival, and a ‘helpless-hopeless’ attitude conferred a greater risk of relapse or death [10].
| By engaging with others in similar difficulty or by participating in educational or behavioral activities, it is believed that patients may develop better coping and adaptive mechanisms to the sequelae of cancer and its treatment.
|
On the other hand, more convincing evidence for efficacy, with improved quality of life, comes from meta-analysis of psychosocial interventions [11, 12]. Rehse and Pukrop’s meta-analysis reviewed 37 published, controlled studies [13]. Intervention with durations greater than 12 weeks were significantly more effective than those of a shorter duration. Meyer and Mark analyzed 62 experiments studying: A) emotional adjustment; B) functional adjustment; C) symptoms related to disease or treatment; D) medical outcomes e.g. (tumor response), and E) global outcomes [14]. Though significant, the positive outcomes were small and of questionable clinical importance.
Interventions
Consumers think it works. Therapists think it works. But does psychotherapy work [15]? Some common disorders have data to support the efficacy of cognitive therapy: for example, generalized anxiety disorder, with an effect size of approximately 2 SD (standard deviations) [15]. As Andrews summarizes in a number of editorials, psychological treatments are difficult to standardize, disability is hard to measure, and small randomized controlled trials are prone to bias [15, 16]. Amazingly, certain standard areas have little or no scientifically proven validity. For example, long-term Freudian psychodynamic therapy has not been proven to be superior to good advice from a benevolent mentor since the first randomized controlled trial 50 years ago [17].
The four main types of intervention commonly used within group support are: cognitive behavioral therapy (CBT), educational therapy, psychotherapy, and expressive group therapy. CBT is believed to aid psychological stress and ameliorate physical effects of treatment through several different techniques including imagery and relaxation exercises [15]. In a study by Greer et al., adjuvant cognitive behavioral therapy was assigned to a random group of cancer patients aged between 18–74 with metastatic disease and a 12-month survival expectancy [11]. Efficacy in treated patients compared to controls was assessed at 8 weeks, 4 months, and 12 months by the ‘Hospital Anxiety and Depression scale,’ and ‘MAC’ scales, ‘Rotterdam symptom checklists’ and ‘Psychosocial adjustment to illness’ scales. Outcome data for 153 patients were obtained at 8 weeks, and showed that patients receiving therapy had significantly higher scores than control patients on fighting spirit and significantly lower scores on helplessness, anxious preoccupation, and fatalism (MAC scale); anxiety (hospital anxiety and depression scale); psychological symptoms (Rotterdam scale); and significantly lower psychological distress on the psychological adjustment to illness scale. At 4 months, data on 137 patients showed that the treatment effect persisted with respect to anxiety and psychological symptoms, but that those receiving therapy had significantly lower psychological distress as measured on the psychological adjustment to illness scale as compared to control. Twelve-month analysis is yet to be presented.
Educational therapy attempts to reduce the sense of helplessness and fear experienced by patients. It aims to replace chaos with control [15, 16]. Although several studies have been conducted in the area of educational intervention, they have all measured different end points. Many evaluate changes in knowledge, more than coping abilities and anxiety levels [15]. Jacobs et al. demonstrated that increased knowledge about disease and treatment reduced anxiety and treatment-associated problems, but also believed that increased knowledge led to more self-awareness and social competency [12]. An evolving theme is that educational groups may be superior to unstructured group therapy [15, 17].
| Educational therapy attempts to reduce the sense of helplessness and fear experienced by patients. It aims to replace chaos with control.
|
In contrast to group therapy, psychotherapy allows a cancer patient to engage with a professional therapist who can offer analysis and emotional support. Cain et al. compared the long-term benefits of group support with individual ‘thematic’ counseling sessions in a controlled study of women with newly diagnosed gynecological cancer [18]. This model involved eight sessions of counseling that included education about disease progression and its treatment and the importance of positive health exercises such as relaxation and diet. Psychological assessments were made pre-therapy, immediately after, and then 6 months later. Women who had received the intervention were found to be significantly less depressed, less anxious, and demonstrated better insight into their disease and appeared to develop more successful relationships with caregivers, though there was no formal measure of knowledge. The model appeared to be equally efficacious as group therapy or individual counseling. The support group provides a structured environment for cohesion and discussion centered around the physical and mental impact of the disease, as well as education about treatment and options. Members are also encouraged to support one another outside the group setting, strengthening important relationships.
While there is little consensus between schools of therapy, compassionate support appears to foster confidence and a positive adjustment to cancer, and group support has increased in popularity since the 1970s [15]. Most support groups focus on both behavioral aspects and the expression of emotions. Patients are encouraged to utilize and recognize their own strengths, to become more aware, to recognize that they are not alone, and to enjoy living in the moment. All of these aspects restore wholeness to one’s sense of mind, body, and spirit [19, 20].
An important caveat is that the patient population has a profound influence on how acceptable adjuvant psychological therapy might be. Moynihan et al. reported a fascinating experiment, in which 73 of 184 newly diagnosed young men with testicular cancer (40%) agreed to enter a randomized trial and 81 (44%) declined to participate but agreed to complete further assessments at 2, 4, and 12 months [21]. Thirty patients wanted no further contact with the researchers. Patients with better prognostic tumors (lower stage p < 0.001) and fewer physical symptoms (p < 0.001) were less likely to participate. Psychosocial factors associated with participation included anxious preoccupation regarding disease (p = 0.01). There were no differences in outcome between participants and non-participants during follow-up. Patients seemed to gain little benefit from adjuvant psychological therapy. While at 2 months, change from baseline favored the treated group in an anxiety subscale, this was not sustained when adjusted for factors related to the disease, and by 12 months, change from baseline seemed to favor the control group.
The Wellness Community: Good to Talk
Located in the metro-west area, The Wellness Community-Greater Boston is one of 22 other Wellness Communities in the U.S., Israel, and Japan. The Greater Boston Community features beautiful hardwood floors, stunning views of the Charles River, and has the peaceful ambience of a personal sanctuary. It truly is an inviting place and is considered ‘home’ by ‘cancer participants’ from 250 local communities living with cancer.
Founded in 1982 by Dr. Harold Benjamin, the Wellness concept grew from Benjamin’s experience with his wife’s physical and psychological battle with breast cancer. The first center was established in Santa Monica, California, and since then has continued to grow in its popularity. The Greater Boston Community was opened in 1993 following the request of a patient, Gilda Radner, to a dear friend for one to be opened within her own community as a result of the significant role the program had played in her fight against the disease, which she sadly came to lose [22]. The community’s guiding principles are "to help people with cancer and their loved ones enhance health and well-being by providing a professional program of support, education and hope." It is currently the largest non-profit support program in the U.S. providing free service to patients and their families. There is a comprehensive advisory board, but the organization maintains its independence from other bodies, medical and spiritual, and does not provide any sort of residential care. The Community acts as a haven where patients are free to participate in programs or simply engage with others in similar situations in a relaxed, non-threatening environment. Programs facilitate coping and reduce helplessness, promote physical well-being through relaxation, psychological, and social support. All of these programs encourage patients to identify their own resources for positive adjustment and take an active role in their illness, engage with one another, and feel understood and ‘whole’ in their battle for recovery. Classes include everything from yoga and guided imagery, to educational programs on nutrition, complementary medicines, and the immune system, typically taught by local professionals. Discussion groups are available for patients with specific cancer types (e.g., non-Hodgkin’s lymphoma), and mind-body therapy sessions dealing with concentration, relaxation, and hypnotherapy are also available.
A Question of Survival
Fundamentally, the question of whether survival is improved by psychological support is the most important [6]. This remains a controversial issue, with contradictory outcome studies predominantly limited to breast cancer sufferers. Few studies are prospective, randomized, controlled well, and use validated tools with sufficient follow-up. To date, there have been 10 studies that fit these criteria [23]. Before Spiegel’s study, published in 1989, few investigators had considered conducting intervention studies in cancer psychotherapy, and had focused on the subjective observance of feelings and the incidence of cancer [24, 25]. The only other influential study, by Bernie Siegel’s group in 1984, was limited by being retrospective, with a significant selection bias and lag period between diagnosis and entry into study [26].
| Patients were encouraged to live life as fully as possible, improve their communication skills with significant others, including physicians, and actively face their fears about death and dying.
|
Spiegel and colleagues studied 86 women with metastatic breast cancer, 50 of whom were allocated, for a year, to professionally led weekly support groups [25]. Issues surrounding the disease, its impact, and coping mechanisms were explored, as well as techniques for symptom control such as hypnosis. Patients were encouraged to live life as fully as possible, improve their communication skills with significant others, including physicians, and actively face their fears about death and dying. The authors retrospectively discovered that patients who participated in the sessions, lived, on average, 17.7 months longer than patients who had not. The authors attributed the outcome to better social support, reduced isolation, positive expression, belonging, encouraged assertiveness, and an improved sense of well-being. Participation appeared to have a greater effect than psychiatric variables, and pre-morbid states did not predict outcome or survival.
Two studies followed Spiegel’s and concluded a similar overall improved survival outcome [27, 28]. However, each study used a different psychotherapeutic intervention as well as patients with different cancers, lymphoma, and melanoma. Fawzy’s paper was further compromised by its small study size (n = 68) and short (6 week) intervention [28]. Rather counter-intuitively, Fawzy’s study also found that higher levels of baseline distress predicted a better survival. Richardson’s study was significantly skewed by the fact that the educational program was designed to improve compliance with oral medication in lymphoma treatment and that this had a significant (p < 0.001) effect on patient survival [27, 28]. A nonrandomized study, which only approached significance, reputed a positive effect on survival and reported on the influence of endogenous traits, unlikely to be amenable to intervention [29]. Kuchler et al. examined survival in 271 patients with cancer of the esophagus, stomach, liver/gallbladder, pancreas, or colon/rectum randomized to standard care or to formal psychotherapeutic support early on in their disease, and Kaplan-Meier survival curves demonstrated better survival for the experimental group than for the control group [30].
Spiegel’s original work has been criticized for discrepancies in the study populations. There were only 12 patients in the control arm by the time differences in survival became apparent. The control arm had a far worse prognosis than SEER matched patients, and survival in oncology is typically measured by the median and not, as Spiegel had reported, the mean, which is particularly effected by a few outliers [31]. If the median survivals are calculated for each group, there are in fact no differences between the control and the intervention arms.
The most influential negative study to date was reported in the New England Journal of Medicine [32]. In a multicenter trial, 235 women with metastatic breast cancer were randomly assigned in a 2:1 ratio to weekly supportive-expressive group therapy or to control. Women assigned to supportive-expressive therapy reported less pain (p = 0.04) and improved symptoms. Women who were more distressed at baseline demonstrated greater benefit. However, survival was not prolonged (median survival, 17.9 months in the intervention group and 17.6 months in the control group). The accompanying editorial rightly identified that ‘mind matters,’ but the case that it can influence survival remains to be proven [23].
|
ACKNOWLEDGMENT |
|---|
|
TopLearning ObjectivesAbstractPresentationDialogueDiscussionReferences |
|---|
|
REFERENCES |
|---|
|
TopLearning ObjectivesAbstractPresentationDialogueDiscussionReferences |
|---|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| HOME | HELP | CONTACT US | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
| THE ONCOLOGIST | STEM CELLS | CME | ALPHAMED PRESS JOURNALS |
