Quality of life related to oral versus subcutaneous iron chelation: a time trade-off study

Objective: To investigate the utility associated with subcutaneous infusion (deferoxamine) compared with once-daily oral administration (deferasirox) of iron chelation therapy.

Methods: Interviews using the time trade-off technique were used to estimate preferences (utility) for health states by finding the point at which respondents were indifferent between a longer but lower quality of life (QoL) and a shorter time in full health. Participants (n = 110) were community-based, 51% women, median age 35 years, from four regions in Sydney, Australia. Respondents rated three health states involving equal outcomes for people with thalassemia but with different treatment modalities for iron chelation; an "anchor state" describing a patient receiving iron chelation without administration mode specified, anchor state plus iron chelation via subcutaneous infusion, and anchor state plus iron chelation through once-daily oral medication.

Results: On an interval scale between 0 (death) and 1 (full health), median (interquartile range) utility of 0.80 (0.65–0.95) for the anchor state, 0.66 (0.45–0.87) for subcutaneous infusion, and 0.93 (0.80–0.97) for once-daily oral administration was obtained. The mean (median) difference of 0.23 (0.27) between the two treatments was statistically significant (Wilcoxon-signed rank test, P < 0.001). Subcutaneous infusion was associated with a mean (median) utility 0.13 (0.14) lower than the anchor state (P < 0.001), and once-daily oral treatment had a utility 0.10 (0.13) higher (P < 0.001).

Conclusion: Community respondents associate oral administration of an iron chelator such as deferasirox with enhanced QoL compared with subcutaneous treatment. Assuming equal safety and efficacy, QoL gains from once-daily oral treatment compared with subcutaneous infusion are significant.

Changes in quality of life and coping among people with multiple sclerosis over a 2 year period

There is a need to investigate the impact of different coping strategies on quality of life (QOL) of people with multiple sclerosis (MS), in order to better inform intervention programs for this population. This study evaluated the relationship between QOL and coping over a 2 year period among people with MS. Participants were 382 people with MS (144 male, 238 females) and 291 people without a neurological or other chronic illness from the general population (101 males, 190 females). People with MS experienced lower QOL than the control group in the domains of global QOL, independence, social and spiritual QOL scales, as well as the problem solving and social/emotional support coping scales. Interestingly, people with MS experienced higher psychological QOL than the general population, and higher detachment and focusing on the positive coping. Over time, people with MS demonstrated increases in their global QOL as well as in their social/emotional support coping. Women demonstrated higher levels than men of global QOL and Social/emotional support coping. The results of these findings have implications for information and intervention programs for people with MS.

Symptoms, ill-health and quality of life of the members of a Porton Down veterans' support group

Background There has been a Human Volunteer Programme at the British chemical weapons research facility at Porton Down since the First World War, in which some of the participants were exposed to chemical warfare agents.

Aim To identify any striking specific morbidity patterns in members of the Porton Down Veterans Support Group (PDVSG).

Methods A self-completed postal questionnaire was prepared including health immediately after the visits to Porton Down, subsequent diagnoses and hospital admissions, symptoms in, and after, the first 5 years after the visits, fatigue symptoms and current quality of life, measured using the SF-36.

Results Responses were received from 289 of 436 (66%). Results reported here relate to 269 male respondents of mean age 66.8 years. Sixty-six per cent reported their first visit to Porton Down in the 1950s. The most common diagnoses or hospital admissions reported were diseases of the circulatory system. In the first 5 years after their visits the most common symptoms were headache, irritability or outbursts of anger and feeling un-refreshed after sleep. In the later period, most common symptoms were fatigue, feeling un-refreshed after sleep and sleeping difficulties. Sixty-five per cent met the definition for a case of ‘fatigue’. Current quality of life dimensions were consistently lower than age-specific estimates from general population samples.

Conclusions Members of the PDVSG responding to this survey reported poorer quality of life than the general population. Despite there being no clear pattern of specific morbidities, we cannot rule out ill-health being potentially associated with past experience at Porton Down

A comparison of mood and quality of life among people with progressive neurological illnesses and their caregivers

The current study was designed to investigate differences in mood and a range of QOL domains among 423 patients and 335 caregivers of people with motor neurone disease (MND), Huntington’s disease (HD), Parkinson’s, and multiple sclerosis (MS). Patients and caregivers completed an anonymous questionnaire that evaluated their mood (anxiety, depression, fatigue, confusion) and QOL (physical, psychological, social, environment). The results demonstrated that caregivers of people with MND and HD experienced most problems with their mood and QOL compared to caregivers of people in the other illness groups. There were few differences in mood or QOL between patients and caregivers. Patients generally showed greater confusion, physical impairment, and psychological maladjustment. The findings suggest that educational and intervention programs need to be developed to help both patients and their caregivers to adjust and cope with these illnesses, particularly caregivers of people with MND and HD.

Association between impaired glucose metabolism and quality of life

Aims
We examined the association of quality of life with glucose tolerance status in an Australian population to determine the stage in the development of diabetes that quality of life is impaired.

Methods
The Australian Diabetes, Obesity and Lifestyle study (AusDiab) was a population-based study of 11,247 people from randomly selected areas of Australia. As part of the study, participants underwent an oral glucose tolerance test and completed the SF-36 quality of life questionnaire.

Results
Previously diagnosed diabetes was associated with a significantly greater risk of being in the lowest quartile of each dimension of the SF-36 scale (except for mental health) and this association was only partially attenuated by adjustment for age, sex, body mass index (BMI), physical activity and treatment for hypertension and lipid abnormalities (adjusted odds ratios [95% CI]: bodily pain, 1.51 [1.18–1.94]; general health, 2.20 [1.64–2.95]; physical functioning, 1.50 [1.10–2.05]; role limitation (emotional), 1.43 [1.07–1.91]; role limitation (physical), 1.57 [1.13–2.18]; social functioning, 1.93 [1.46–2.54] and vitality, 2.24 [1.56–3.22]. Among those with newly diagnosed diabetes (NDM) and impaired glucose tolerance (IGT), there was also evidence of reduced quality of life on some dimensions of the SF-36 scale (NDM, general health, physical functioning and role limitation (physical); IGT, physical functioning and social functioning) after adjustment for confounders.

Conclusion
These findings show that diabetes is associated with a reduced quality of life and that this is evident in the early stage of the disease, particularly in relation to the ability to perform physical activities.

The quality of life of single mothers making the transition from welfare to work

This study examined the quality of life of single mothers making the mandatory transition from welfare to work. The Australian government purported that the benefits of making this transition would include higher incomes, better social participation, and improved wellbeing. It is currently unknown, however, how single mothers currently engaged in welfare to work programs evaluate their quality of life. Quality of life scores for 334 single mothers engaged in welfare to work in Australia were compared with normative data. Participants reported significantly lower quality of life scores than the general population for all quality of life domains, highlighting the need to carefully examine welfare to work policies to ensure they promote participants' quality of life.

The impact of caring for a child with cerebral palsy : quality of life for mothers and fathers

Background:  Although it is expected that caring for a child with cerebral palsy (CP) can impact on the quality of life (QOL) of caregivers, the QOL of carers' has yet to be adequately examined. The aims of this study are to: (1) explore the QOL of mothers and fathers of children with CP aged 3–18 years; and (2) examine whether the impact of caring for a child with CP changes from childhood to adolescence.

Method: A qualitative study was conducted utilizing a grounded theory framework. Twenty-four mothers and 13 fathers of children and adolescents with CP aged 3–7 years (n = 15), 8–12 years (n = 10) and 13–18 years (n = 12) and with varying levels of impairment (GMFCS Level I = 1, II = 4, II = 3, IV = 5, V = 12) participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL.

Results: There were no differences in parental QOL among subgroups (i.e. mothers and fathers, age groups, GMFCS levels). Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access.

Conclusions: Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.