Quality of Life

What is quality of life?

Quality of life was broadly defined as early as 1947, when the World Health Organization described it as ‘a state of complete physical, mental and social well-being, and not merely absence of disease and infirmity’ (King et al 1997).

Quality of life is a complex phenomenon that affects an individual’s personality and lifestyle. It is developed over time with physical, psychological, sociocultural, sexual and spiritual effects (Woods 1975). It is affected by change in appearance, mental states, personal and social factors and, in the case of cancer, the effects of disease process and treatments. It is tied closely to the concept of body image, self-esteem and self-concept, and is affected by attitudes, beliefs and behaviours (Penson et al 2000).

Poor body image can result in the patient feeling worthless as a person; physically unattractive or even repulsive; and unable to feel valued, loved or able to express themselves sexually (Box 48.2) (Dudas 1992). For some women, quality of life means feeling alive. It is personal and individual, and what is considered normal or acceptable to one person or couple may be unacceptable to another.

Effects of gynaecological cancer

Both the diagnosis and management of gynaecological cancer can have a major impact on every aspect of a woman’s quality of life (Donovan et al 1989). It can be an overwhelming experience for a woman and her family, Then, before the woman has had time to work through her feelings of shock and grief relating to the diagnosis, she must begin treatment. There is no doubt that a diagnosis of gynaecological cancer can potentially compromise the key elements described for quality of life: body image, sexual health and relationships (Auchinloss 1989, Colyer 1996). Women of childbearing age experience sadness and anger at the loss of fertility, and women of all ages may view the loss of female organs as a loss of femininity (Steginga and Dunn 1997).

The short- and long-term side-effects of treatment may also affect a woman’s self-worth, self-esteem and confidence, and have potential or actual psychosocial and psychosexual implications (Box 48.3) (Anderson 1985, Sacco Ezzell 1999). For example, a premature menopause, hair loss, lymphoedema, a stoma or a surgical scar may impact further on the reaction to the actual cancer (Anderson 1993).

However, it is also important to remember that body image may be altered and affect sexual health and quality of life without any change in appearance, function or control (Price 1990). Being told the diagnosis of cancer may alter body image, as this new knowledge of change may affect the woman’s perception of herself and her health. This perception of change can lead to a distortion of body image; the woman may sense that something in herself or in her way of relating to others has changed, even before cancer or treatment have any physical effect. Smithman (1981) points out: ‘Some changes in function can be purely psychological, and yet the potential for disturbed self-concept is great’. It is therefore widely accepted that body image, sexual health and overall quality of life are affected by physical factors, physical sensations, and emotional and social reactions.

The partner

It is also important to assess the partner’s understanding and needs, as the effect of the cancer is on the relationship as a result of change to either individual. A needs assessment among cancer patients and their partners showed that 63% of the participants would have liked to receive more information about sexual functioning after treatment, and that 64% would participate in a specific counselling programme on the quality-of-life changes if this was offered (Bullard et al 1980).

Model (1990) examined reactions to body image change following surgery in some depth, and linked these to concepts of grief and loss. This is useful as it considers how nurses support both patients and their partners psychologically. Model suggests that we are far from doing this successfully, and that it is important to create an atmosphere in which patients and their partners feel accepted and understood if they experience anxiety, anger or grief, and to provide a medium through which they can express, share and clarify their feelings. Model recommends that the whole healthcare team should work together to do this, which does indeed seem vital, given that many patients and their partners express feelings of isolation following discharge from treatment and for some time thereafter (Colyer 1996).

A high proportion of women are anxious (31%) and depressed (41%) after surgery for gynaecological cancer (Corney et al 1992). The majority have chronic sexual problems and a high proportion would like further information on after-effects: physical, sexual and emotional. Fifty per cent of young women would have liked their partners to be involved, and 25% of the 40 partners who were involved would have preferred further information.

Ten years on from the publication of these studies, there remains a lack of consistency within both nursing and the medical professions in the ongoing assessment process used to identify change and impact on quality of life for both women and their partners.

What we must try to achieve

The specialist multidisciplinary gynaecological oncology support team has an important role in patient education and management of side-effects, aimed at maintaining or improving quality of life.

Faced with multiple adjustment demands relating to the cancer, the treatments, survivorship issues or palliation of disease and its symptoms, it is important that the couple are encouraged to prioritize what is important to them and have ownership over agreed interventions. It is essential that this assessment not only covers the cancer diagnosis and treatment, but takes into account what life was like for the woman and her partner/family before the cancer (Box 48.4).

Box 48.4 Aspects of quality of life that may change

• Altered body image

• Low self-confidence

• Low self-esteem

• Unable to deal with losses, i.e. fertility/premature menopause

• Loss of self-concept

• Loss of self-perception

• Loss of femininity

• Loss of control

Emotional impact (grieving scenario)

• Feelings of isolation

It is important that we view the woman as much more than a ‘cancer diagnosis’ and consider her uniqueness by asking ourselves ‘Who is this woman we are trying to help?’. In this way, we can establish how actual or potential change may impact on her current measures for her quality of life. Roles, identity and relationships such as being a wife/partner, lover, mother, daughter, sister, employee or employer, friend and carer may be challenged, threatened and even altered either temporarily or permanently. Issues such as housing, transport, finances, insurance and ongoing responsibilities for paying the bills and child care, along with the challenge of a cancer diagnosis and treatment, may affect her ability to cope. Her usual resources and coping mechanisms and strategies may be challenged to the limit and all this will impact on her quality of life.

Psychosocial Issues and Returning to Normality

The woman may have undertaken several different roles and responsibilities prior to the cancer diagnosis and treatments. She may have been the central supporting figure in a household of some complexity, and may have provided the economic support, as well as the responsibilities of a mother, a partner, a lover and a homemaker. The very act of returning to any or all of these roles is often a significant milestone in recovery.

Apart from the obvious anxieties about her prognosis and family relationships, financial worries and change in role can be an immense source of stress for the patient and partner. The potential for this needs to be assessed prior to treatment and at subsequent follow-up.

Often practical help can be offered, such as a letter to the employer or facilitating the intervention of social services, and giving information on benefit entitlements and grants (e.g. Macmillan) where patients are unaware of possible financial assistance, and help in dealing with transport problems.

For patients living with severe ongoing disability due to the cancer or its treatment, or those with progressive disease where the aim is no longer cure but palliation, additional grants such as disability living allowance, attendance allowance and ‘special rules’ or palliative care funding may be applied for. The benefits helpline should be contacted to clarify eligibility.

The issues that must be addressed (Box 48.7) may be ongoing, and follow-up appointments provide an opportunity to assess how the woman and her family are readjusting to life following cancer.

Sexuality and Psychosexual Issues Relating to Gynaecological Cancer

In 1986, the World Health Organization stated that key elements of sexual health were:

• a capacity to enjoy and control sexual and reproductive behaviour in accordance with a social and personal ethic;

• freedom from fear, shame, guilt, false beliefs and other psychological factors inhibiting sexual response and impairing sexual relationships; and

• freedom from organic disorders, diseases and deficiencies that interfere with sexual and reproductive function

A gynaecological cancer diagnosis and treatment may threaten or actually change the key elements described for sexual health, and are associated with considerable sexual dysfunction (IOG 1999).

The background

A woman’s physical genital development, her attitudes and security about being a woman, and her view of herself in relation to others, especially in intimate relationships, are all part of her uniqueness. Sexual functioning and concerns vary throughout one’s lifespan and cannot be assumed for any age group or extent of disease. A woman’s genital region may be perceived as psychologically very special, being both exquisitely sensitive and primal in sexual arousal. A malignancy in this area may be especially disturbing and significantly different in its emotional effects from cancer in other parts of the body. Reactions may vary according to feelings of the individual woman about her genitalia prior to developing a gynaecological cancer. However, there is no doubt that cancer of the vulva, which necessitates very evident vulval mutilation as a consequence of surgical treatment, can produce severe problems with psychosexual function (IOG 1999).

The quality of a woman’s life needs to be considered and assessed in relation to what it was before she became ill. An unsatisfactory relationship prior to a cancer diagnosis may be improved by a couple having to cope and coming closer together. Alternatively, poor relationships may continue to be devoid of intimacy and affection. How the effects of the cancer and its treatment impact on either of these scenarios needs ongoing assessment.

Effects of gynaecological cancer

A study by Cull et al (1993) included 83 women with early-stage cervical cancer, half of whom had received surgery and half of whom had received radiotherapy. They were studied by standard self-report questionnaires and semi-structured interview. Over half reported deterioration in sexual function, and the irradiated women suffered more with loss of sexual pleasure. Many women felt that their psychological needs were not being met adequately.

A similar UK study included 105 women who had undergone radical pelvic surgery, of whom 65% had been treated for primary cervical cancer (Corney et al 1993). The mean time since treatment was 2 years. Of 73 women in whom the vagina had been preserved and who were in a sexual relationship, 16% never resumed intercourse. Two-thirds were experiencing sexual difficulties and around half reported a deterioration in their sexual relationship. However, this study highlights the need to never ‘assume’ as, interestingly, around one-third of these couples felt that their marital relationship had actually improved.