The aim of this study was to establish the effectiveness of scalp cooling in preventing alopecia for patients with breast cancer who received the trial combination chemotherapy of Epirubicin and Docetaxel. Doubt remains about the general effectiveness of scalp cooling in preventing hair loss for patients receiving chemotherapy. There is very little information available about its specific effectiveness with combinations of Taxanes and Anthracycline drugs. Of the 40 patients who received this drug combination, 10 were included in a pilot study whereas the remaining 30 constituted the main study sample. A randomized controlled study was undertaken whereby the intervention group received scalp cooling via gel cool caps and the control group received no specific preventative intervention. Nurses assessed participants' hair loss using a modified version of the WHO scale at seven time points and also recorded hair loss photographically. Two independent experts rated the photographs using the same scale. Patients self-reported in relation to overall hair loss, hair condition, levels of emotional upset, negativity about appearance, hair re-growth and wig use. Significantly greater hair loss was apparent in the control group during most of the treatment period. However, the level of protection afforded by the cool caps was relatively poor with this chemotherapy combination. The marginal benefits of scalp cooling in this context must be clearly explained to patients.
The Patient-generated Index (PGI) is a health-related quality of life (HRQoL) measure which asks respondents to nominate the areas of their lives which are most affected by their health condition, so that they can then rate the severity of the effects and weight their relative importance. It is unusual amongst such measures in that it is designed for postal administration. This study assessed the ability of the revised PGI to measure change in HRQoL in a population of 161 people who had previously been identified as having limiting long-term illness. A questionnaire, including a revised version of the PGI and the developmental version of the SF-36, was mailed at two time points (T1 and T2), 4.5 months apart. The PGI was subsequently assessed in terms of practicality, validity, reliability and responsiveness. At T1, 62% of those who felt that they still had a health problem affecting their life completed the PGI correctly. These people were significantly younger and had spent longer in education than the remaining 38%. Only 19 respondents completed the PGI correctly on both occasions, rendering reliability and responsiveness testing inconclusive. The value of the PGI is significantly diminished by the fact that many people cannot complete it correctly. Future development of the instrument is appraised in the context of related measurement methods.
Within health services research the quest for better ways of measuring quality of life as an outcome variable continues apace. Recent developments in this area have seen increasing attempts to incorporate individually generated content and values into quality of life measures while retaining valid psychometric measurement properties. Following a brief overview of current conceptual approaches to quality of life measurement, this paper reviews the development of two leading Respondent-generated instruments: the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the Patient Generated Index (PGI). The relative strengths and weaknesses of these tools and their potential applications for nursing and nursing research are appraised. These measures both address and manifest a number of fundamental conceptual and methodological problems, and represent an innovative attempt to square the quantitative--qualitative circle. As such they offer challenging opportunities for nursing at a number of levels. Their elicitation and quantification of individual components of quality of life offer opportunities for nurses to plan care and goal set with patients. As yet, however, the validity, reliability, responsiveness and practicality of these instruments as outcome measures are debatable and require further testing. Nurse researchers could contribute to this process by using Respondent-generated measures as an adjunct to existing, established tools in outcome studies. Moreover, nursing is well placed to investigate and debate the validity of the conceptual assumptions underpinning these new instruments.
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