Dataset Information

The information needs of people living with ankylosing spondylitis: a questionnaire survey.

ABSTRACT: BACKGROUND:Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS). METHODS:Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences. RESULTS:Despite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public. CONCLUSIONS:There appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.

SUBMITTER: Cooksey R

PROVIDER: S-EPMC3553011 | biostudies-literature | 2012 Dec

REPOSITORIES: biostudies-literature

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The information needs of people living with ankylosing spondylitis: a questionnaire survey.

Cooksey Roxanne R Brophy Sinead S Husain Muhammad Jami MJ Irvine Elizabeth E Davies Helen H Siebert Stefan S

BMC musculoskeletal disorders 20121210

<h4>Background</h4>Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS).<h4>Methods</h4>Participants in an existing AS cohort study were asked to complete a postal or online questionnai ...[more]

PMID: 23227937

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Project description:We have compared synovial biopsies from ankylosing spondylitis and undifferentiated spondylitis patients with healthy controls and osteoarthritis patients Objective: In spondylarthropies, whole-genome gene expression profiling studies have been limited to peripheral blood to date. By undertaking a study in knee synovial biopsies from spondylarthropy (SpA) and ankylosing spondylitis (AS) patients we aimed to identified joint-specific candidate genes and pathways. These pathways may mediate systemic inflammation driven joint damaging processes and more specifically, the osteoproliferation that is characteristic of these conditions. Methods: RNA was extracted from six seronegative SpA, two AS, three osteoarthritis (OA) and four normal control knee synovial biopsies. Whole genome expression profiling was undertaken using the Illumina DASL system, which assays 24000 cDNA probes. Differentially expressed candidate genes were then validated using quantitative PCR and immunohistochemistry. Results: 416 differentially expressed genes were identified that clearly delineated between AS/SpA and control groups. Pathway analysis showed altered gene-expression in oxidoreductase activity, osteoblast activity, B-cell associated, matrix catabolic, and metabolic pathways. The inflammatory mediator, MMP3, was strongly upregulated in AS/SpA samples and the Wnt pathway inhibitors DKK3 and Kremen1 were downregulated. Conclusion: Pathways mediating both systemic inflammation as well as local tissue changes were identified. This suggests initial systemic inflammation in spondylarthropies transfers to and persists in the local joint environment, subsequently mediating changes in genes directly involved in the destructive tissue remodelling. Fifteen knee synovial biopsy tissue samples consisting of six seronegative spondyloarthropy (SpA), two ankylosing spondylitis (AS), three osteoarthritis (OA) and four normal control biopsies were obtained from the Synovial Tissue Bank at the Repatriation General Hospital in Adelaide, South Australia with the appropriate ethical approval (Supplementary Table 1). All patients provided informed written consent.

Project description:Person-centered care is a collaborative approach to health care. To provide effective, person-centered care to people living with severe mental illness, it is necessary to understand how people view their own needs. The Perceived Need for Care Questionnaire (PNCQ) was used in the Australian National Survey of High Impact Psychosis (SHIP) to deepen understanding and evaluate, at a population level, the needs of Australian adults living with psychotic illness. SHIP participants were 1,825 adults, aged 18-65 years, living with psychotic illness and in contact with public specialized mental health services across Australia in 2010. The survey package included demographic and clinical items, and various scales including the PNCQ appraising a comprehensive range of life domains. Logistic regressions measured the impact that various demographic, clinical and psychosocial independent variables (e.g., loneliness, health-related quality of life, disability, accommodation type) had on the likelihood of inadequately met PNCQ domain-related need. Over two-thirds of people living with psychosis reported at least two areas of unmet need for care despite most being in contact with mental health services. Work or using one's time and socializing, counseling, and self-care domains had the largest proportion of inadequately met needs (range between 49 and 57%). Feelings of loneliness and/or social isolation were significantly associated with unmet needs across all PNCQ domains, except for financial needs. Health-related quality of life was significantly associated with unmet needs across all domains, except for housing needs. Disability was significantly associated with unmet social, occupation (work or time use), housing and medication-related needs. Consumers view their needs for care as unmet across many life areas despite being in contact with mental health services. Loneliness, unmet psychosocial needs, and health-related quality of life appear strongly interconnected and warrant greater attention in the delivery of person-centered care for people living with psychosis. Support to address social, work or time use and housing related needs among people living with psychosis appears less well targeted toward those with disability. Results underscore the link between quality of life, recovery and needs. These inter-relationships should be considered in mental health services research and evaluation.

Project description:BackgroundPreference-based measures of health-related quality of life (HRQoL), such as the EQ-5D or the SF-6D, are essential for health economic evaluation. However, they are rarely included in clinical trials of ankylosing spondylitis (AS). This study aims to develop mapping algorithms to predict EQ-5D-3L and EQ-5D-5L health utility scores from the Bath Ankylosing Disease Activity Index (BASDAI) and the Bath Ankylosing Spondylitis Functional Index (BASFI).MethodsPatients with AS were recruited from the largest tertiary hospital in Shandong province, China, between December 2019 and October 2020. Patients were selected by convenience sampling method according to the following criteria: (1) diagnosed with AS according to the New York criteria; (2) aged 18 years and above; and (3) without mental disorders; (4) able to understand the questionnaires; (5) without serious complications. There were 243 patients who completed the face-to-face questionnaire survey, and 5 cases with missing values in key variables were excluded. Ordinary least squares, censored least absolute deviations, Tobit, adjusted limited dependent variable mixture model and beta-mixture model (BM) in the direct approach and ordered logit and multinomial logit (Mlogit) model in the response approach were used to develop mapping algorithms. Mean absolute error, root mean square error, Spearman's correlation coefficient and concordance correlation coefficient were used to access predictive performance.ResultsThe 238 patients with AS had a mean age of 35.19 (SD = 9.59) years, and the majority (74.47%) were male. The observed EQ-5D-3L and EQ-5D-5L health utility values were 0.88 (SD = 0.12) and 0.74 (SD = 0.27), respectively. The EQ-5D-5L had higher conceptual overlap with the BASDAI and BASFI than the EQ-5D-3L did. The Mlogit was the best-performing model for the EQ-5D-3L, and the BM showed better performance in predicting EQ-5D-5L than other direct and indirect mapping models did.ConclusionThis study demonstrates that the EQ-5D-5L, rather than EQ-5D-3L, should be selected as the target outcome measure of HRQoL in patients with AS in China, and the BM mapping algorithm could be used to predict EQ-5D-5L values from BASDAI and BASFI for health economic evaluation.

Dataset Information

The information needs of people living with ankylosing spondylitis: a questionnaire survey.

Publications

The information needs of people living with ankylosing spondylitis: a questionnaire survey.

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