Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study

Background Autoimmune rheumatic diseases (ARDs) such as inflammatory arthritis and Lupus, and many of the treatments for these diseases, can have a detrimental impact on fertility and pregnancy outcomes. Disease activity and organ damage as a result of ARDs can affect maternal and foetal outcomes. The safety and acceptability of hormonal contraceptives can also be affected. The objective of this study was to identify the information and support needs of women with ARDs during pregnancy planning, pregnancy and early parenting. Methods This mixed methods study included a cross-sectional online survey and qualitative narrative interviews. The survey was completed by 128 women, aged 18–49 in the United Kingdom with an ARD who were thinking of getting pregnant in the next five years, who were pregnant, or had young children (< 5 years old). The survey assessed quality-of-life and information needs (Arthritis Impact Measurement Scale Short Form and Educational Needs Assessment Tool), support received, what women found challenging, what was helpful, and support women would have liked. From the survey participants, a maximum variation sample of 22 women were purposively recruited for qualitative interviews. Interviews used a person-centered participatory approach facilitated by visual methods, which enabled participants to reflect on their experiences. Interviews were also carried out with seven health professionals purposively sampled from primary care, secondary care, maternity, and health visiting services. Results Survey findings indicated an unmet need for information in this population (ENAT total mean 104.85, SD 30.18). Women at the pre-conception stage reported higher needs for information on pregnancy planning, fertility, giving birth, and breastfeeding, whereas those who had children already expressed a higher need for information on pain and mobility. The need for high quality information, and more holistic, multi-disciplinary, collaborative, and integrated care consistently emerged as themes in the survey open text responses and interviews with women and health professionals. Conclusions There is an urgent need to develop and evaluate interventions to better inform, support and empower women of reproductive age who have ARDs as they navigate the complex challenges that they face during pregnancy planning, pregnancy and early parenting

Basic methods for the assessment of health-related quality of life in uro-oncological patients

BACKGROUND: The evaluation of patients' expectations and quality of life in uro-oncology is considered an important outcome of treatment efficacy and satisfaction. Aim of this systematic review was to evaluate the most frequently adopted tools in uro-oncology to assess Health Related Quality of Life (HRQoL). EVIDENCE ACQUISITION: A systematic literature search until October 2015 was performed on MEDLINE, Cochrane Library, PubMed combining the following terms: "quality of life," "health-related quality of life," "kidney cancer," "bladder cancer," "prostate cancer." Additional references were obtained from the reference list of full-Text manuscripts. Data were synthesized using meta-Analytic methods conformed to the PRISMA statement. EVIDENCE SYNTHESIS: HRQoL is a fundamental step in evaluating treatment outcome in patients with urological cancers. HRQoL is mostly measured through several questionnaires, which are generally categorized in generic questionnaires, exploring the patient's well-being en bloc; specific questionnaires, assessing each single domain of health status; and uro-oncological specific questionnaires, mainly characterized by a modular approach. Although different questionnaires have been proposed and validated, the standard method to be adopted in urology is far from the solution and further studies should investigate the strength and weakness of the different questionnaires. CONCLUSIONS: HRQoL questionnaires should become a standard method to evaluate medical/surgical outcomes in uro-oncology. Their implementation may significantly improve patients' satisfaction and help physicians in the decisionmaking process and possibly reduce health care costs

Somatostatin receptor scintigraphy using (99m)Tc-EDDA/YNIC-TOC in patients with medullary thyroid carcinoma.

Purpose Several new somatostatin analogues have been developed for the diagnosis and therapy of different tumours. Since somatostatin receptors are often over-expressed in medullary thyroid carcinoma (MTC), the aim of our study was to evaluate the utility of scintigraphy with the somatostatin analogue (99m)Tc-EDDA/HYNIC-TOC in MTC in comparison with other diagnostic techniques. Methods Forty-five patients with MTC, aged 14-83 years, were investigated. Scintigraphy using (99m)Tc-EDDA/HYNIC-TOC (Tektrotyd) was performed 2 and 4 h post injection of 740 MBq (20 mCi) of the tracer. Other imaging techniques were also applied and analysed in individual cases (ultrasonography, computed tomography, (99m)Tc(V)-DMSA, (131)I-MIBG, (99m)Tc-MDP, (111)In-DTPA-octreotide and (18)F-FDG-PET) and compared with (99m)Tc-EDDA/HYNIC-TOC. Results In group 1 (eight patients before thyroidectomy), uptake of the tracer was found in the primary tumours. In group 2 (six patients with remission), a false positive result was found in one patient; in the remaining five patients, no pathological foci were visualised. In group 3 (31 patients with post-surgical hypercalcitoninaemia), scintigraphy was true positive in 23 patients (74.2%): uptake in the thyroid bed was found in five patients, in the lymph nodes in 18 and in bone metastases in four. Using (99m)Tc-EDDA/HYNIC-TOC scintigraphy, the overall sensitivity was 79.5%, specificity 83.3%, accuracy 80.0%, positive predictive value 96.9% and negative predictive value 38.5%. Conclusion (99m)Tc-EDDA/HYNIC-TOC is clinically useful for scintigraphy in the follow-up of patients with MTC. It can be used in clinical practice for preoperative evaluation, for localisation of local recurrence or distant metastases and particularly for therapy decision making

What is and what ought to be: A meta-synthesis of residential aged care staffs’ perspectives on quality care

Background: As places of both residence and work, what constitutes “good quality care” in residential aged care requires consideration of staffs’ perspectives. Objective: A meta-synthesis of the qualitative literature was conducted exploring residential aged care staff perspectives on “quality of care.”. Methods: Six electronic databases were searched for articles that met the screening inclusion criteria. This meta-synthesis was informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, and included studies were critically appraised using JBI SUMARI. Two independent reviewers conducted thematic network mapping and analysis of included articles, with oversight from three additional reviewers. Results: Forty-seven articles were included, with findings summarised into four organising themes and nine basic themes. The four organising themes about quality care from staff perspectives include direct care, professional values and competence, the care environment and organisational/regulatory factors. Conclusion: Staff describe a wide range of factors that they perceived to influence the quality of care. Some may feel motivated to leave employment in aged care, due to organisational pressures that make staff unable to uphold what they perceive as an acceptable standard of care. There is tension between professional values and organisation/regulatory factors—regulation should be enacted at a level that supports good practice and staff's moral integrity. Relevance to clinical practice: This review found that while person-centred care is now well established as the benchmark of quality care in residential aged care homes, achieving it in reality remains challenged by limitations on staff members’ time, resources and sometimes their competencies and the regularity of their employment

Aged Care Residents’ Perspectives on Quality of Care in Care Homes: A Systematic Review of Qualitative Evidence

There is increasing interest in harnessing aged care residents’ perspectives to drive quality improvement in aged care homes. We conducted a systematic review of qualitative evidence including literature examining residents’ descriptions of “quality of care” in aged care homes, using database searches and screening records according to eligibility criteria. Three independent reviewers conducted quality assessment of forty-six eligible articles and performed thematic synthesis of articles’ findings. We distinguish nine key themes describing factors influencing quality care: staffing levels, staff attitude, continuity, routine, environment, decision-making and choice, dignity of risk, activities, and culture and spirituality. While many themes were consistent across studies, residents’ prioritization of them varied. Aged care home residents have differing conceptions of quality care as well as heterogeneous and dynamic needs and preferences. Care providers are best able to facilitate quality care when intentional efforts are made to recognize this and tailor delivery of services the individual residents