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Summary:Using a prospective, repeated measures design, this study investigated the psychosocial functioning of patients and a close relative pre-and post-allogeneic and autologous bone marrow transplantation (BMT). All patients (n = 28) undergoing BMT in a 1 year period, and their relatives, were interviewed 1 week pre-transplant and at 3, 6 and 12 months post-BMT, using quantitative and qualitative measures. Pre-transplant data revealed a high level of anxiety (61% with moderate to severe anxiety), and a low level of depression (14% with moderate to severe depression). Twelve patients died in the study period. For the surviving patients there was a statistically significant improvement in physical, psychological and social functioning. Most relatives (88%) reported considerable psychological distress pretransplant and at 3 months post-transplant, but this was largely resolved by 12 months post-transplant. Significant correlations between the relative's distress and patient's physical and psychological wellbeing were observed at 3 months post-transplant, but not at the other assessment points. The findings from this study will help in counselling patients and their relatives as to what to expect in the year following BMT. Keywords: psychosocial; outcome; BMT; families It has been well documented that bone marrow transplantation (BMT) is physically and psychologically demanding for patients. [1][2][3][4][5][6][7] The effects of BMT on donors 8 and on other family members has received less attention, 9 although evidence suggests considerable disruption to families. 10 Prospective longitudinal research that includes baseline assessments is required, 11 with greater emphasis on the process of psychosocial adjustment in both patients and families. 9,11 One of the first prospective studies of psychosocial functioning in BMT showed that functioning was most impaired at 90 days post-transplant, with most aspects of physical and psychosocial functioning restored after 1 year. 12 A further prospective study reported similar findings, with little difference in physical and psychosocial status when assessed at pre-BMT and 1 year post-BMT. 13 While mean differences on pre-BMT and 1 year scores were not sig- nificant, the use of means obscures possible significant changes that individual patients may experience. 13 An analysis of change scores between pre-and post-transplant for individual patients suggests many experience substantial changes between these two assessments, 13 although detailed longitudinal studies of individual adaptation are scarce. 11 Qualitative research methods have rarely been used when studying BMT patients, particularly in a prospective longitudinal manner. Qualitative research is often viewed as the antithesis of quantitative research, 14 being somehow 'unscientific' and unreliable. 15 However, quantitative and qualitative methods are better viewed as complementary, 14 especially when health and illness issues are being examined in small numbers of patients, 16 and offer a useful addition to the usual...

1 | PLAIN LANGUAGE SUMMARY 1.1 | Individualized funding has positive effects on health and social care outcomes Individualized funding provides personal budgets for people with disabilities, to increase independence and quality of life. The approach has consistently positive effects on overall satisfaction, with some evidence also of improvements in quality of life and sense of security. There may also be fewer adverse effects. Despite implementation challenges, recipients generally prefer this intervention to traditional supports. | What is this review about?Individualized funding is an umbrella term for disability supports funded on an individual basis. It aims to facilitate self-direction, empowerment, independence and self-determination. This review examines the effects and experiences of individualized funding. What is the aim of this review?This Campbell systematic review examines the effects of individualized funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organizations.

Summary:A total of 75 patients underwent sibling allogeneic stem cell transplantation (SCT) for chronic myeloid leukaemia in first chronic phase from 1984 to 2000. Of these patients, 51 (68%) were alive at a median follow-up of 98 months (range 34-217 months). Nine (18%) patients relapsed and seven (14%) received donor lymphocyte transfusions. Quality of life (QoL) was assessed crosssectionally using the EORTC QLQ-C30, a Leukaemia-BMT-specific module and questionnaires on sexual functioning, fertility and late effects. A total of 46 (90%) replied. Scores for Role (P ¼ 0.018) and Cognitive (Po0.001) function were significantly lower when compared to an age-adjusted general population. Dyspnoea (P ¼ 0.022) and Financial Difficulties (Po0.001) were significantly more common in the SCT group. No difference was found for scores in the Physical, Emotional and Social domains or the overall Global Health Status/ QoL. Decreased sexual functioning was found in one-third of respondents. Although most BMT recipients reported a good QoL, a minority have difficulty with reintegration into professional roles and consequent monetary problems. Identified cognitive and sexual impairments highlight the need for long-term access to psychosocial support. Bone Marrow Transplantation (2004) 34, 545-556. doi:10.1038/sj.bmt.1704638 Published online 9 August 2004 Keywords: chronic myeloid leukaemia; quality-of-life; allogeneic SCT Recent years have seen an increase in the therapeutic options available for the treatment of patients with chronic myeloid leukaemia (CML). 1 Allogeneic stem cell transplantation (SCT), however, remains the standard of care for younger patients with an HLA-compatible donor. The most recent EBMT registry survey reported that the median survival of patients who underwent non-T-celldepleted transplantation for CML in first chronic phase (CP) from an HLA-matched sibling donor had not been reached at 10 years. 2 Health-related quality of life (QoL) has been defined as referring 'to the extent to which one's usual or expected physical, emotional and social well-being are affected by a medical condition or its treatment'. 3 Most of the previous studies are cross-sectional in design, apply one of several available instruments and pool all patients transplanted for different diagnoses at a single centre. [4][5][6][7][8][9][10][11][12] Although marked morbidity in the first few years is evident, there is a clear trend to improved QoL in long-term survivors of transplantation. 6,8 Nonetheless, aggregated studies confirm that a minority of individuals continue to suffer from the effects of chronic graft-versus-host disease (GvHD) and sexual dysfunction. Our observations confirm and extend those of Kiss et al 12 in a group of 24 patients receiving SCT for CML in first CP.The European Organisation for Research and Treatment of Cancer (EORTC) QoL questionnaire -QLQ-C30 13 -was used in this study. Both EORTC population reference data and CML-specific data have been generated using this instrument. [14][15][16] In addition to t...

Although genetic and environmental factors operating before or around the time of birth have been demonstrated to be relevant to the aetiology of the major psychoses, a seasonal variation in the rates of admission of such patients has long been recognised. Few studies have compared first and readmissions. This study examined for seasonal variation of admission in the major psychoses, and compared diagnostic categories by admission status. Patients admitted to Irish psychiatric inpatient facilities between 1989 and 1994 with an ICD-9/10 diagnosis of schizophrenia or affective disorder were identified from the National Psychiatric Inpatient Reporting System (NPIRS). The data were analysed using a hierarchical log linear model, the chi-square test, a Kolmogorov-Smirnov (KS) type statistic, and the method of Walter and Elwood. The hierarchical log linear model demonstrated significant interactions between the month of admission and admission order (change in scaled deviance 28.77, df = 11, P < 0.003). Both first admissions with mania, and readmissions with bipolar affective disorder exhibited significant seasonality. In contrast, only first admissions with schizophrenia showed significant seasonal effects. Although first admissions with mania and readmissions with bipolar disorder both show seasonality, seasonal influences appear to be more relevant to onset of schizophrenia than subsequent relapse.

Internationally the relocation of people with intellectual disability from institutions has brought significant gains to their quality of life. This study contrasted three groups of persons in Ireland who moved either to personalized arrangements (n = 29) or to community group homes (n = 31) with those who remained in congregated settings awaiting relocation (n = 29). Persons moving to rented accommodation with personalized support tended to be younger and had fewer support needs than those in group homes. They had greater control and choice in their lives, more community engagement and increased personal relationships compared to residents in group homes but those remaining in congregated settings fared worse of all. However, average staff costs were significantly higher in the latter settings. The implications for the future provision of group living arrangements are discussed along with the need for further longitudinal research to assess the sustained impact of personalized arrangements and their funding.

Background There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method A Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model. Results Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making. Discussion Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution People with dementia and carers were involved in study design, data analysis and presentation.

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