Jerome Marley, BSc, RN, PGDip (Advanced Nursing), PGDip (Nurse Education)
Lecturer Practitioner in Urological Nursing, Craigavon Area Hospital Group Trust and School of Nursing at the University of Ulster, Jordanstown, Northern IrelandEvaluation is an essential element of the patient care process. Clinical, laboratory and radiological tests are increasingly used to help evaluate patient outcomes (Staniszewska, 1998) and nursing care. But much nursing activity centres around more holistic and less visible areas of the patient experience, which cannot be so easily evaluated. These include the promotion of autonomy, informed decision-making and issues arising from accompanying the patient and his or her family on a difficult treatment journey.
Evaluation is an essential element of the patient care process. Clinical, laboratory and radiological tests are increasingly used to help evaluate patient outcomes (Staniszewska, 1998) and nursing care. But much nursing activity centres around more holistic and less visible areas of the patient experience, which cannot be so easily evaluated. These include the promotion of autonomy, informed decision-making and issues arising from accompanying the patient and his or her family on a difficult treatment journey.
When nursing in these more 'grey' areas, reference is often made to improving the patient's quality of life. Numerous quality-of-life instruments have been developed. They usually take the form of a validated questionnaire completed by the patient or by the health professional. Such instruments examine various aspects of the patient's life, including symptom control, response to treatment and other issues thought to be relevant.
But exactly what is meant by the term 'quality of life?' Can it be measured and, if so, how? What place does quality of life have in urological nursing and what can it offer the patient and health professional? This paper examines these issues.
What is quality of life?
Finding a universal definition of quality of life and agreeing an understanding of its place in urological care is not an easy task. Within the literature there are repeated claims that widely accepted definitions of what is meant by it are as yet not agreed (Addington-Hall and Kalra, 2001; Kimmel, 2000; Macduff, 2000; Muldoon et al, 1998; Staniszewska, 1998). Other terms are often used interchangeably, such as 'health-related quality of life', 'functional status', and 'subjective health status' (Staniszewska, 1998). Such terms underline the lack of consensus and point to the breadth of areas that need addressing when thinking about what makes up a person's quality of life.
Hakamies-Blomqvist et al (2001) suggest quality of life is a multidimensional construct that includes physical, functional, emotional and social well-being issues.
These are all routinely addressed by nurses in their daily care of patients. Muldoon et al (1998) suggest that quality of life seeks two kinds of information: the individual's functional status and the patient's appraisal of health as it affects his or her own life. They add that most quality-of-life instruments are designed to measure objectively the adequacy of people's functioning in various aspects of life: physical, occupational and interpersonal. Again, nurses are familiar with this.
As well as to measure direct patient care, quality of life is useful in clinical trials. Nurses attending a major conference or reading drug company promotional literature cannot escape claims of the positive effect on a patient's quality of life of drugs treating conditions as diverse as metastatic prostate cancer, depression, gastric ulcers and erectile dysfunction. Sometimes nurses can use these claims and information to support their patients.
However, the term quality of life is often used vaguely and without clear definition (Saunders et al, 1998). More worryingly, Hakamies-Blomqvist et al (2001) argue that, in relation to chemotherapy studies, and other comparable clinical studies, errors in the timing of quality-of-life assessments can threaten the reliability and validity of the findings, so that important patient quality-of-life issues are over- or understated.
When considering the positive quality-of-life claims of new drugs and treatments, nurses should exercise caution.
Higginson and Carr (2001), writing for doctors, identified eight potential ways in which quality-of-life measures might aid routine clinical practice (Figure 1). These measures focus not only on patient care issues, but on issues that are relevant to nurse training and the evaluation of current and future care quality. Higginson and Carr (2001) say: 'The underlying reason for using quality-of-life measures in clinical practice is to ensure that treatment plans and evaluations focus on the patient rather than the disease.'
Can quality of life be measured?
In relation to the quality of life experienced by many urology patients, the literature focuses on it as a statistically measurable concept. Reasons are offered by Kimmel (2000) and include:
- Health professionals' desire to gauge the present status of patients with regard to identified symptoms (for example episodes of urinary incontinence following radical prostatectomy)
- The need to determine patients' satisfaction with aspects of care being received
- Patients' perceptions of the effects of a therapy
- Health professionals' desire to quantify patients' adjustment to a medical/care regimen
- To differentiate between coping levels in patients experiencing different medical treatments.
The need for information on these issues is understandable, but the degree to which the holistic quality of a patient's life can be understood through measurement is in doubt. Asking if quality-of-life measures are patient centred, Carr and Higginson (2001) acknowledge that aspects of patients' perspectives of their disease and treatment and their preferred outcomes can indeed be measured. However, the challenge in measuring quality of life lies in the uniqueness of life to individuals, they say, suggesting that many current models of measurement fail to take account of this individuality (Carr and Higginson, 2001). Consequently, when health professionals attempt to measure quality of life, they may in fact be measuring only some health status variables, which give less than the entire picture.
Hunt (1997) urges caution in the use of questionnaires, suggesting that calculating an overall or mean score for individual experience, with all its richness and uniqueness, makes little sense. Given the current lack of a definition of quality of life or agreement on what should be included in any scale for measuring it, these concerns seem as valid today as five years ago.
Echoing Mount and Scott (1983), no matter how many measurements one takes, it is impossible to fully capture something as individual and unique as the beauty of a flower, and the same applies to the complexity of any individual's reaction to a urological diagnosis and treatment programme.
Quality-of-life questionnaires can help obtain valuable data about aspects of the patient experience, but should not be dominant in determining an individual's life quality. Only the individual patient can make this judgement accurately.
Quality of life in urological nursing
Like all nurses, those in the urological setting try to help patients make judgements and evaluations about key issues of their care, including expected or possible outcomes. Ideally, decisions are made within a multidisciplinary team setting, with all professionals playing an appropriate role.
The example of prostate cancer
Better information is now provided to men and their families on treatment outcomes as a consequence of the 1994 Prostate Cancer Outcomes Study (PCOS), according to Potosky et al (1999). Responses to quality-of-life questionnaires help health professionals to understand better the burden that treatment can place on a particular patient, and to prepare and support him for it (Potosky et al, 1999) as well as helping others in the future.
Treatment of prostate cancer can have an impact that lasts for many years (Litwin et al, 1995). Men who have treatment for localised prostate cancer can return to normal in many aspects of day-to-day life following treatment, but some functions may be profoundly altered. Obtaining a better understanding of such problems via quality-of-life assessment assists health professionals in their ongoing care of such men.
It is valuable to gather information on bowel, urinary and sexual functioning in men who have had a radical prostatectomy, for example.
With localised prostate cancer, controversy surrounds possible treatment options for men (Giesler et al, 2000). In part this is because aggressive therapy is often accompanied by side-effects and complications that affect many aspects of the patient's life and the lives of those close to him.
Depending on the stage of the disease and treatment, the bewildering problems patients can encounter include erectile dysfunction and urinary complications (Jakobsson et al, 2000). A framework to understand their experiences better and plan their care would assist these men and those close to them.
Benefits for patients and practitioners
Quality-of-life measures can benefit patients and health professionals, as long as their limitations are acknowledged and they are used appropriately. A quality-of-life assessment questionnaire as part of follow-up indicates to the patient that the care offered has been well considered and is not just random and overly dependent upon a particular practitioner's preferences. Quality-of-life information can strengthen communication between nurses working in different settings but caring for the same person. One example would be the discharge of a patient from acute hospital to community-based rehabilitative nursing.
Health professionals make decisions about the life quality of their patients very frequently (Addington-Hall and Kalra, 2001). Professional perceptions can, however, be at variance with those of the patients. Evidence-informed structure and a patient perspective are essential to such evaluations. Patients are not always in a position to assess their own quality of life via the completion of a questionnaire, warn Addington-Hall and Kalra (2001). Cognitive impairment, communication deficits or severe emotional distress brought upon by the treatment burden or consequences of surgery can all make it impossible for the patient to fully assist.
The nurse can still use the broad areas of a quality-of-life assessment as a framework to enquire about these patients' experiences. But instead of slavishly sticking to a questionnaire, they should use 'aesthetic' skills and personal knowledge (Carper, 1992).
The 'aesthetic' skill of the nurse lies in the ability to engage with the patient in a subjective, individual and unique way. An experienced nurse uses intuition and informed understanding to compose a picture, with the patient, of his life quality and to identify jointly areas where help may be needed. This depends on the nurse being experienced and personally aware of his or her influence. Here, the nurse is using himself or herself in a therapeutic way to make a positive contribution to a patient's care (McKenna, 1997). Such personal ways of nursing, when properly informed by theory and experience, can be the way to make a significant difference to the life quality experience of patients who may be having urological problems, for example.
While instruments exist to measure patients' quality of life in urological care, there is little agreement about how accurately they can do this. Choosing an appropriate measure, and using it in a way that allows the patient to decide on his or her own quality-of-life indicators, is no easy task.
However, the use of quality-of-life questionnaires can greatly assist the nurse and patient to begin to understand the many experiences that urological disease can cause.
If patients are also encouraged to describe their own indicators of what makes for good life quality, questionnaires can be useful in offering important information alongside this, especially in charting patients' reactions and responses to prolonged courses of treatment.
Coupled with the nurse's experience and knowledge, this closeness to the patient can make real and lasting differences to the quality-of-life experiences of people with urological disease.
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