Women's History Review:Special Issue: Family, Private Life and Sexuality

A collection of essays based on the conference of the International Federation for Research in Women's History which was held in Queen's University Belfast in August 2003.

Quality of life and healthcare utilisation in cystic fibrosis:A multicentre UK study

The aim of our study was to discover the health status and healthcare utilisation associated with pulmonary exacerbations in cystic fibrosis (CF) and chronic Pseudomonas aeruginosa infection.

Patients with CF from five UK CF centres attended two visits, 8–12 weeks apart. They were classified at visit 1 as being in one of the three health states: no current pulmonary exacerbation; “mild” (no hospitalisation) pulmonary exacerbation; and “severe” (hospitalisation) pulmonary exacerbation. All patients completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and EuroQol (EQ-5D) and a clinical form, and forced expiratory volume in 1 s (FEV1) was measured at visits 1 and 2. Annual healthcare utilisation data were collected.

94 patients of mean±sd age 28.5±8.2 yrs and FEV1 58.7±26.8% were recruited. 60 patients had no pulmonary exacerbation, 15 had a mild and 19 had a severe pulmonary exacerbation at visit 1. EQ-5D and CFQ-R data showed that the worse the exacerbation, the poorer the health-related quality of life (HRQoL). There were strong relationships between the CFQ-R and EQ-5D domain scores. The mean rate of pulmonary exacerbations per patient per year was 3.6 (1.5 in hospital and 2.2 at home). The mean length of stay per hospital pulmonary exacerbation was 9 days.

As exacerbation status worsens, patients experience worse HRQoL. There is a significant healthcare burden associated with treatment of pulmonary exacerbation and long-term prophylaxis.

Evaluation of quality of life and priorities of patients with glaucoma

PURPOSE: To investigate the quality of life and priorities of patients with glaucoma.

METHODS: Patients diagnosed with glaucoma and no other ocular comorbidity were consecutively recruited. Clinical information was collected. Participants were asked to complete three questionnaires: EuroQuol (EQ-5D), time tradeoff (TTO), and choice-based conjoint analysis. The latter used five-attribute outcomes: (1) reading and seeing detail, (2) peripheral vision, (3) darkness and glare, (4) household chores, and (5) outdoor mobility. Visual field loss was estimated by using binocular integrated visual fields (IVFs).

RESULTS: Of 84 patients invited to participate, 72 were enrolled in the study. The conjoint utilities showed that the two main priorities were "reading and seeing detail" and "outdoor mobility." This rank order was stable across all segmentations of the data by demographic or visual state. However, the relative emphasis of these priorities changed with increasing visual field loss, with concerns for central vision increasing, whereas those for outdoor mobility decreased. Two subgroups of patients with differing priorities on the two main attributes were identified. Only 17% of patients (those with poorer visual acuity) were prepared to consider TTO. A principal component analysis revealed relatively independent components (i.e., low correlations) between the three different methodologies for assessing quality of life.

CONCLUSIONS: Assessments of quality of life using different methodologies have been shown to produce different outcomes with low intercorrelations between them. Only a minority of patients were prepared to trade time for a return to normal vision. Conjoint analysis showed two subgroups with different priorities. Severity of glaucoma influenced the relative importance of priorities.

North by Northwest: The Life and work of Liam McCormick:Donegal Calling

I became an architect because my father was an architect, and I returned to Donegal to practice architecture because Liam McCormick was able to make great buildings there. My father's first job after graduating was with Liam in Derry in 1958, so architecture and Liam McCormick have been with me since I was a child. When I was six years old I remember Creeslough church being completed. I remember my aunt being concerned and asking my father why the curtains were fitted in the priest's house in Creeslough before the roof was added. He explained to her it was a flat-roofed house and, as such there would be no conventional roof! I was fascinated by the idea and how such an important building could be inspired by Muckish mountain.

Impact of counselling on quality of life and sleep in cancer patients

It has been acknowledged that poor quality of sleep significantly correlates with poor quality of life; evidence suggests that counselling has a positive impact not only on the cancer patient's quality of life, but also on family members and friends. The aim of this service evaluation was to determine if there was an improvement in clients’ quality of life and sleep patterns following counselling as offered by a local cancer charity. A total of 60 matched pre- and post-counselling questionnaires were completed and subjected to statistical analysis. When considering quality of life, in the domains of Role Emotional, Mental Health and Mental Component Summary Score, it can be concluded that counselling has a positive effect on emotional health and mental wellbeing. The mean total number of hours sleep per night significantly increased from 6 hours sleep per night at baseline to 6.8 hours sleep per night at the completion of counselling (p=0.005) showing clients gained an extra 48 minutes sleep per night. The improved emotional and mental wellbeing alongside the extra 48 minutes sleep per night provides evidence that there is a positive outcome for those patients and families who use counselling services. Nurses and other members of the multidisciplinary team should be encouraged to discuss supportive therapies with patients and those affected by cancer at all stages of the cancer trajectory, regardless of social status, gender or cancer type.