Colette Ray

Coping and other predictors of outcome in chronic fatigue syndrome : A 1-year follow-up

In this prospective study, 137 patients with chronic fatigue syndrome were followed-up at a 1-year interval to determine factors relating to outcomes. Nearly two thirds reported an improvement on direct ratings of change. In analyses with fatigue and functional impairment at follow-up as the criteria, and controlling for earlier status, poorer outcomes were predicted by illness duration, subjective cognitive difficulty, and somatic symptoms; there was no influence of anxiety, depression, or general emotional distress. Fatigue was also predicted by information-seeking, and impairment by behavioral disengagement and a low internal locus of control. The belief that ones actions can influence outcomes modified the relationship between illness accommodation and both fatigue and impairment; adverse outcomes were associated with accommodating to illness only in the context of lower levels of perceived control. Thus, it is suggested that interventions that either discourage avoidance of activity or enhance perceived control could benefit the course of the illness.

Development of a measure of symptoms in chronic fatigue syndrome: The profile of fatigue-related symptoms(pfrs)

Abstract Chronic fatigue syndrome (CFS) is a disorder of uncertain aetiology which attracts increasing research interest. This paper describes the development of a multidimensional measure incorporating the diverse symptoms associated with the illness. The Profile of Fatigue-Related Symptoms (PFRS) has four scales: emotional distress, cognitive difficulty, fatigue and somatic symptoms. These showed good convergence with comparison measures, high reliability and high internal consistency. CFS patients had markedly elevated scores compared with a student comparison group, and these scores correlated with indices of illness severity. The PFRS is a short and easily administered measure which, it is suggested, may be used to assess patients in terms of the severity and pattern of their disorder, to relate subjective symptoms to immunological and other findings, to evaluate the effects of treatments, and to compare the symptomatology of CFS with that in other fatiguing illnesses.

Ways of coping with Chronic Fatigue Syndrome: Development of an illness management questionnaire

Chronic fatigue syndrome (CFS) is a disorder of uncertain aetiology, and there is uncertainty also about the appropriate way in which patients should manage the illness. An illness management questionnaire (IMQ) was designed to assess coping in CFS. This was completed by 207 patients, in parallel with the COPE scales (a general measure of coping that can be applied situationally), and measures of functional impairment, anxiety and depression. The IMQ yielded four factors: maintaining activity, accommodating to the illness, focusing on symptoms and information-seeking. Scales based upon these factors together predicted 26, 27 and 22% of the variance in functional impairment, anxiety and depression, respectively, and each scale had significant relationships with relevant scales of the COPE, supporting the interpretation of the factors. It is suggested that the IMQ may be employed to relate ways of coping to outcomes in CFS, and to assess coping as a mediator of change in cognitive-behavioural interventions.

I. Social, sexual and personal implications of paraplegia

Paraplegia can lead to social stigmatisation, sexual difficulties, and emotional maladjustment. The specific nature of problems experienced in these areas were investigated in an interview study of 22 male and female paraplegics. These interviews were followed up by a postal questionnaire and both qualitative and quantitative data are presented in this report. Effective counselling can only be offered on the basis of an understanding of problems as they are subjectively experienced, and with an acknowledgement of the wide differences that exist between individuals in the way that they view and react to their situation.

The Surgeon’s Role

It is important to be aware of the stress which confronts the patient with breast cancer, but we must not lose sight of the conflicts and uncertainties to which the surgeon also is exposed. These relate to his abilities to treat the disease itself, the way in which he involves the patient in the treatment, and the extent to which he should and can offer support for the patient in adjusting to her illness.

Cancer Attitudes and Related Behavior

The psychological impact of breast cancer is important not only in considering women’s reactions to diagnosis and treatment, but also their behavior when they discover a breast abnormality. A significant number of women delay seeking medical advice at this stage. Delay is usually defined as the interval that elapses from the time the symptom is first noticed to the time when the patient comes for a medical examination. It is often thought of in terms of discrete “blocks” of time, such as thirty days or less, one to three months, and three to six months. Many investigators have followed Pack and Gallo’s example of arbitrarily defining an interval of more than three months as delay (Pack & Gallo, 1938), and at least 20 percent of women with breast symptoms wait for this or a longer time before consulting (Cameron & Hinton, 1968; Williams, Baum, & Hughes, 1976). Before looking at reasons for delay, it should be pointed out that there has been some controversy about its implications for effective treatment. Devitt (1976) has argued for a deterministic view of the disease’s development, suggesting that there is little evidence that the interval between detection and treatment is an important variable in outcome. This viewpoint can, however, be challenged given that delay may itself depend upon the biological nature of the disease. A fast-growing cancer may alarm a woman by its sudden appearance and spur her into action, whereas a slower growing tumor may cause less alarm and be dealt with in a more leisurely fashion. Furthermore, the influence of delay on outcome may depend on the aggressiveness of the tumor: it may be of significance primarily in cancers of intermediate aggressiveness, where delay might allow the tumor to pass through that phase in its natural history when viable clonogenic cancer cells disseminate into the circulation. Disregarding the finer points of these discussions, the dissemination of cancer does occur over time, and it would seem reasonable to argue that even a cancer of low metastasizing potential may lead to death if diagnosis and treatment are excessively delayed. The value of prompt consultation has thus been an important theme in cancer education.

Cancer: A Psychosomatic Disease?

Psychological factors can affect illness outcome through their influence on behavior when a symptom is discovered, and their influence on behaviors aimed at early detection. Can they, in addition, play a role in the etiology of the disease itself? The ability of the psyche to affect the body and its processes is widely recognized, and the concept of psychosomatic illness reflects this recognition. However, traditionally, the label psychosomatic is applied to a limited number of illnesses, such as peptic ulcers and heart disease, and this implies that there exists a category distinct from these to which the label does not apply and in whose case these influences are absent. Such a view is no longer acceptable, and in current theories and research it is assumed that psychological factors play a role in a variety of illness contexts.

Breast Cancer and Its Treatment

Over 12,000 women die of breast cancer every year in the United Kingdom. In the United States the figure is 34,000. It ranks as the commonest cancer in women and the commonest cause of death among women in the 35 to 55 age group. An individual woman in her lifetime stands a one in 14 chance of developing the disease, and there is even some evidence that the annual incidence and mortality are increasing slowly throughout the Western Hemisphere. Because of these disturbing facts and the very nature of the disease, the subject has become highly charged and emotional, so much so as to cloud rational discussion.

Psychological Support: Sources Other than the Surgeon

Generally speaking, nurses have a more explicit and well-articulated concept of their role than do physicians. This role is often regarded as having two distinct though interwoven aspects: a technical function that corresponds with the case orientation referred to in the context of the surgeon’s role, and an expressive function that comprises the kinds of concerns implicit in a personal orientation. The former, the technical function, refers to the instrumental activities the nurse engages in to support the patient’s physical treatment and care, and the latter refers to the effort she makes to reduce the patient’s emotional tensions. The importance of caring for the total patient, that is for her psychological as well as her physical needs, is very commonly recognized (Brown, 1965; Johnson & Martin, 1965). The nurse informs the patient, reassures her, conveys warmth and interest, and helps to clarify problems and to solve them (Gardner, 1979) but this is to some extent an ideal, as opposed to a description of actual practice. Nurses may want to provide total care, but feel that they do not have the opportunity to do so (Hockey, 1976). Most of the available time may be taken up by physical tasks, and, even if it is not, it is often seen as inappropriate for the nurse to stay by the patient just to talk (Stockwell, 1972). Any interaction that does take place, then, usually takes place while the nurse is carrying out some other task. There are problems also in the expectations that patients may have of the nursing role. They sometimes see the nurse as there to care for their physical needs only, however the nurse herself may regard her function, and patients may be reticent about their feelings and reluctant to ask for other kinds of support. Physicians and surgeons too can have expectations that inhibit nurses in their interactions with patients. A nurse may be reluctant to give information and have detailed discussions with patients, for fear of incurring the displeasure and criticism of a physician who regards himself as responsible for what to disclose and what guidance to give (Goodwin & Taylor, 1977; Kalish & Kalish, 1977; Shukin, 1979).

Coping with Stress

Coping refers to the “things people do to avoid being harmed by life’s strains” (Pearlin & Schooler, 1978, p. 2). They try to overcome difficulties and minimize the impact of unpleasant events by using skills and habits that have been developed over a lifetime. Coping implies a goal or purpose, whether or not this is consciously recognized. It is behavior directed toward the solution or mitigation of a problem, and the term coping should not strictly speaking be used, as it sometimes is, to describe emotional responses that lack this purposive element. Let us consider some general points about the nature of coping before addressing the specific issue of coping with breast cancer.