From inclusion to independence – Training consumers to review research

Health and medical research invariably impacts on the lives of everyday people. Organisations in the developed world are increasingly involving the public in health research projects, and research governance structures and processes. The form the involvement takes varies, as does the level of involvement, from individuals, to groups, to the wider community. Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decisions, can be effectively fostered. The theoretical foundation, design and development of a task based consumer-training program, including a number of enabling factors to support the success of such training are presented. This work is likely to be of value to those planning to train consumers in technical or complex areas.     

Medical tests: women's reported and preferred decision-making roles and preferences for information on benefits, side-effects and false results

Objective To determine women's preferences for and reported experience with medical test decision‐making. Design Computer‐assisted telephone survey. Setting and participants Six hundred and fifty‐two women resident in households randomly selected from the New South Wales electronic white pages. Main outcome measures Reported and preferred test and treatment (for comparison) decision‐making, satisfaction with and anxiety about information on false results and side‐effects; and effect of anxiety on desire for such information. Results Overall most women preferred to share test (94.6%) and treatment (91.2%) decision‐making equally with their doctor, or to take a more active role, with only 5.4–8.9% reporting they wanted the doctor to make these decisions on their behalf. This pattern was consistent across all age groups. In general, women reported experiencing a decision‐making role that was consistent with their preference. Women who had a usual doctor were more likely to report experiencing an active role in decision‐making. More women reported receiving as much information as they wanted about the benefits of tests and treatment than about the side‐effects of tests and treatment. Most women wanted information about the possibility of false test results (91.5%) and test side‐effects (95.6%), but many reported the doctor never provided this information (false results = 40.0% and side‐effects = 31.3%). A substantial proportion said this information would make them anxious (false results = 56.6% and side‐effects = 43.1%), but reported they wanted the information anyway (false results = 77.6% and side‐effects = 88.1%). Conclusions Women prefer an active role in test and treatment decision‐making. Many women reported receiving inadequate information. If so, this may jeopardize informed decision‐making.     

Confirmation of hepatitis C infection: a comparison of five immunoblot assays

BACKGROUND: Recently, new immunoblot assays for the detection of antibodies to hepatitis C virus (HCV) became available. STUDY DESIGN AND METHODS: The performance of five confirmatory anti-HCV immunoblot assays was studied with samples with known HCV antibody and HCV RNA status. The assays were a third-generation strip recombinant immunoblot assay (RIBA-3, Chiron Corp., Emeryville, CA), a second-generation HCV blot (DB-2 blot, Diagnostic Biotechnology, Singapore), the Wellcozyme HCV Western blot (Murex blot, Murex Diagnostics, Dartford, UK), an immunodot HCV assay (Matrix, Abbott Laboratories, Chicago, IL), and the third-generation HCV line immunoassay (Liatek-III, Organon Teknika, Boxtel, The Netherlands). RESULTS: Sensitivity on samples from 48 HCV RNA-positive, second-generation RIBA (RIBA-2)-positive persons and specificity on samples from 31 low-risk donors was 96 percent or better for all assays. The sensitivity on 31 HCV RNA-positive, RIBA-2- indeterminate samples was as follows: Liatek-III, 94 percent; RIBA-3, 90 percent; Murex blot, 61 percent; Matrix, 55 percent; and DB-2 blot, 39 percent. In testing 39 HCV RNA-negative, RIBA-2-indeterminate donor samples, the percentage found to be negative was Liatek-III, 77 percent; RIBA-3, 67 percent; Murex blot, 49 percent; DB-2 blot, 33 percent; and Matrix, 15 percent. The order of sensitivity on four HCV seroconversion series was (from high to low): RIBA-3, Liatek-III, DB-2 blot, Murex blot, and Matrix; the differences were small. CONCLUSION: Detection of HCV antibodies was not refined by the addition of new HCV antigens (NS5, E2/NS1), but by improved classical antigens (core, NS3, NS4). Replacement of the commonly used RIBA-2 will resolve the status of a high proportion of RIBA-2-indeterminate samples.     

When and how to initiate discussion about prognosis and end-of-life issues with terminally ill patients

The aim of this study was to explore by whom, how, and when discussions about prognosis and end-of-life issues should be initiated with terminally ill patients, and the context in which these issues can be optimally discussed. Focus groups and individual interviews were conducted with 19 palliative care (PC) patients, 24 carers, and 22 PC health professionals (HPs). Participants had disparate views regarding by whom and when such discussions should be initiated, although a similar range of perspectives was expressed by all participant groups. Four main approaches were identified: wait for the patient/carer to raise the topic; HPs to offer all PC patients and their carers the opportunity to discuss the future (preferred by the majority of participants); HPs to initiate the discussion when the patient/family need to know; or HPs to initiate the discussion when the patient/family seem ready. Four themes emerged regarding the optimal context of the discussion: importance of the relationship with HP, clarifying the patient/carers' understanding and how much detail they want to know, negotiating who should be present during the discussion, and who should deliver the information. Initiating prognostic discussions with terminally ill patients requires considerable skill and sensitivity. Communication skills training for HPs may be required to optimize such discussions.     

Yeast aconitase binds and provides metabolically coupled protection to mitochondrial DNA

Aconitase (Aco1p) is a multifunctional protein: It is an enzyme of the tricarboxylic acid cycle. In animal cells, Aco1p also is a cytosolic protein binding to mRNAs to regulate iron metabolism. In yeast, Aco1p was identified as a component of mtDNA nucleoids. Here we show that yeast Aco1p protects mtDNA from excessive accumulation of point mutations and ssDNA breaks and suppresses reductive recombination of mtDNA. Aconitase binds to both ds- and ssDNA, with a preference for GC-containing sequences. Therefore, mitochondria are opportunistic organelles that seize proteins, such as metabolic enzymes, for construction of the nucleoid, an mtDNA maintenance/segregation apparatus.     

Psychological morbidity and quality of life of ethnic minority patients with cancer: a systematic review and meta-analysis

Background

Ethnic minority is associated with higher cancer incidence and poorer survival than is being in the majority group. We did a systematic review and meta-analysis to assess whether psychological morbidity and health-related quality of life (HRQoL) were affected by minority status.

Methods

We searched Medline, AMED, PsycINFO, Embase, CENTRAL, CINAHL, PubMed, Sociological Abstracts, and Web of Science for English-language articles published between Jan 1, 1995, and October, 2009. Articles were eligible if they reported original data on anxiety, depression, distress (for psychological morbidity), or HRQoL in minority and majority cancer patients or survivors. Minority status was defined as being an immigrant or having an ethnic, linguistic, or religious background different to the majority of the population in the country where the research was done. We excluded African Americans and indigenous groups. Eligible articles were rated for quality of reporting, external validity, internal validity, sample size, and power. Each quality criterion was rated independently by two reviewers until inter-rater reliability was achieved. In a meta-analysis we compared mean scores adjusted for socioeconomic status and other sociodemographic and clinical variables, where available. Effect sizes greater than 0·5 and 95% CI that included 0·5 or −0·5 were deemed clinically important, with negative values indicating worse outcomes in minority patients. We assessed publication bias by estimating the number of potential unpublished studies and the number of non-signficant studies with p=0·05 required to produce a non-significant overall result.

Findings

We identified 21 eligible articles that included 18 datasets collected in the USA and one in each of Canada, Romania, and the UK. Ethnic minority groups were Hispanic, Asian or Pacific Islander, or Hungarian (one dataset). Overall, we found minority versus majority groups to have significantly worse distress (mean difference −0·37, 95% CI −0·46 to −0·28; p<0·0001), depression (−0·23, −0·36 to −0·11; p=0·0003), and overall HRQoL (−0·33, −0·58 to −0·07; p=0·013). Further analyses found disparities to be specific to Hispanic patients in the USA, in whom poorer outcomes were consistent with potentially clinically important differences for distress (effect size −0·37, 95% CI −0·54 to −0·20; p<0·0001), social HRQoL (−0·45, −0·87 to −0·03; p=0·035), and overall HRQoL (−0·49, −0·78 to −0.20; p=0·0008). Results were significantly heterogeneous for overall HRQoL and all domains. Tests for interaction, for adjusted versus unadjusted and comparisons of high-quality, medium-quality, and low-quality articles, were generally non-significant, which suggests no bias. We found no evidence of any substantive publication bias.

Interpretation

Hispanic cancer patients in the USA, but not other ethnic minority groups, report significantly worse distress, depression, social HRQoL, and overall HRQoL than do majority patients, of which all but depression might be clinically important. Heterogeneous results might, however, have limited the interpretation. Data for other minority groups and for anxiety are scarce. More studies are needed from outside the USA. Future reports should more clearly describe their minority group samples and analyses should control for clinical and sociodemographic variables known to predict outcomes. Understanding of why outcomes are poor in US Hispanic patients is needed to inform the targeting of interventions.

Funding

Prince of Wales Hospital, Sydney, Australia.     

Physical activity in women with ovarian cancer and its association with decreased distress and improved quality of life

Objectives: To document levels of and changes in physical activity before and after ovarian cancer diagnosis and explore associations with psychosocial outcomes. Methods: Of 1207 eligible Australian Ovarian Cancer Study (AOCS) participants, 798 participated in an additional prospective Quality of Life (QoL) Study which measured anxiety, depression and QoL at 3–6 monthly intervals for 2 years beginning 3–48 months after diagnosis. AOCS asked about physical activity before diagnosis and 530 women also completed a one‐off lifestyle questionnaire 7–64 months after diagnosis which assessed activity during their first and, if relevant, second‐to‐third and fourth‐to‐sixth years following diagnosis. Analysis of variance was used to relate physical activity to psychosocial outcomes. Results: Almost 40% of women decreased their physical activity in the first year after diagnosis. Approximately 25% still had lower levels after 2–3 and 4+years. Recent physical activity level was inversely associated with depression and positively associated with QoL (P<0.05). Also, women who maintained or increased their physical activity after diagnosis had better mean depression and QoL scores than women who decreased physical activity or remained inactive (P<0.05). Among women who received chemotherapy shortly prior to completing the lifestyle questionnaire, high versus low or medium physical activity was associated with significantly lower mean depression scores during both periods of treatment and non‐treatment (P<0.05). Conclusions: Many women did not regain their pre‐morbid physical activity levels several years after ovarian cancer diagnosis. Low physical activity may simply be a consequence of poor well‐being but, alternatively, physical activity may improve psychosocial health of this group. Copyright © 2010 John Wiley & Sons, Ltd.     

The motherhood choice: themes arising in the decision-making process for women with multiple sclerosis

OBJECTIVE: This study aimed to determine the main themes and concerns for women with Multiple Sclerosis when considering motherhood. METHOD: Twenty women with multiple sclerosis from various stages in the decision-making process participated in focus-groups where information was gathered regarding their experiences of making this decision. RESULTS: The themes emerging most frequently during the decision-making process were: a) concerns about the mother's own health and well-being; b) well-being of the child; c) coping with parenting; d) societal attitudes; e) experiencing parenting and f) timing and pressure of the decision. CONCLUSION: The results indicate that information regarding the effect of MS on pregnancy and child-rearing and the effect of pregnancy on MS and its progression need to be made more accessible to women. Information would be a valuable resource for women going through this decision-making process.     

The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure)

BACKGROUND: Many cancer survivors experience ongoing morbidity over the survivorship continuum and their supportive care needs have yet to be comprehensively assessed. METHODS: This study aimed to develop and empirically evaluate a self-report measure of cancer survivors' supportive care needs. In Phase I, questionnaire items were generated based upon previous qualitative research that identified both unique and shared needs in survivors and their partners; items were constructed into the Cancer Survivors' Unmet Needs measure (CaSUN). In Phase 2, the CaSUN was completed by 353 cancer survivors who had been diagnosed with cancer between 1 and 15 years earlier and were currently disease-free. RESULTS: After modification, the CaSUN included 35 unmet need items, 6 positive change items and an open-ended question. Good acceptability, internal consistency and validity were demonstrated, although test-retest reliability was low. Maximum likelihood factor analysis identified five discrete factors: Existential Survivorship, Comprehensive Care, Information, Quality of Life and Relationships. CONCLUSIONS: Preliminary data indicates that the CaSUN meets the majority of psychometric criteria for assessment measures, although its low test-retest reliability awaits further investigation. The CaSUN will facilitate the evaluation of supportive care services and generation of service delivery recommendations for cancer survivors.