The Institute of Medicine (IOM) identified patient-centeredness as crucial to quality health care. The IOM endorsed six patient-centeredness dimensions that stipulated that care must be: respectful ...to patients' values, preferences, and expressed needs; coordinated and integrated; provide information, communication, and education; ensure physical comfort; provide emotional support; and involve family and friends. Patient-reported measures examine the patient's perspective and are essential to the accurate assessment of patient-centered care. This article's objectives are to: 1) use the six IOM-endorsed patient-centeredness dimensions as a framework to outline why patient-reported measures are crucial to the reliable measurement of patient-centered care; and 2) to identify existing patient-reported measures that assess each patient-centered care dimension.
For each IOM-endorsed patient-centeredness dimension, the published literature was searched to highlight the essential role of patients in assessing patient-centered care and informing quality improvement efforts. Existing literature was also searched to identify examples of patient-reported measures that assess each patient-centeredness dimension.
Patient-reported measures are arguably the best way to measure patient-centeredness. For instance, patients are best positioned to determine whether care aligns with patient values, preferences, and needs and the Measure of Patient Preferences is an example of a patient-reported measure that does so. Furthermore, only the patient knows whether they received the level of information desired, and if information was understood and can be recalled. Patient-reported measures that examine information provision include the Lung Information Needs Questionnaire and the EORTC QLQ-INFO25. In relation to physical comfort, only patients can report the severity of physical symptoms and whether medications provide adequate relief. Patient-reported measures that investigate physical comfort include the Pain Care Quality Survey and the Brief Pain Inventory. Using patient-reported measures to regularly measure patient-centered care is critical to identifying areas of health care where improvements are needed.
Abstract Background Antenatal substance use poses significant risks to the unborn child. We examined use of tobacco, alcohol and cannabis among pregnant Aboriginal and Torres Strait Islander women; ...and compared characteristics of women by the number of substances reported. Methods A cross-sectional survey with 257 pregnant Indigenous women attending antenatal services in two states of Australia. Women self-reported tobacco, alcohol and cannabis use (current use, ever use, changes during pregnancy); age of initiation of each substance; demographic and obstetric characteristics. Results Nearly half the women (120; 47% (95%CI:40%, 53%) reported no current substance use; 119 reported current tobacco (46%; 95%CI:40%, 53%), 53 (21%; 95%CI:16%, 26%) current alcohol and 38 (15%; 95%CI:11%, 20%) current cannabis use. Among 148 women smoking tobacco at the beginning of pregnancy, 29 (20%; 95%CI:14%, 27%) reported quitting; with 80 of 133 (60%; 95%CI:51%, 69%) women quitting alcohol and 25 of 63 (40%; 95%CI:28%, 53%) women quitting cannabis. Among 137 women reporting current substance use, 77 (56%; 95%CI:47%, 65%) reported one and 60 (44%; 95%CI:35%, 53%) reported two or three. Women using any one substance were significantly more likely to also use others. Factors independently associated with current use of multiple substances were years of schooling and age of initiating tobacco. Conclusions While many women discontinue substance use when becoming pregnant, there is clustering of risk among a small group of disadvantaged women. Programmes should address risks holistically within the social realities of women's lives rather than focusing on individual tobacco smoking. Preventing uptake of substance use is critical.
Objective
Many people with cancer report an unmet need for peer support, yet participation rates are low. This study examined cancer patients' preferences for participating in peer support, and the ...characteristics associated with having or wanting to participate in peer support.
Methods
Adult cancer patients were recruited from outpatient oncology clinics at 5 hospitals in Australia. Participants were invited to self‐complete 2 questionnaires: one at recruitment assessing their demographic and cancer characteristics, and another 4 weeks later assessing their preferences for participating in cancer‐related peer support.
Results
The peer support questionnaire was completed by 177/273 (65%) of participants. Most (59%, n = 104) had or wanted to participate in peer support. More than half reported that it was important the people they connected with had the same cancer treatment (56%, n = 99) or type of cancer (53%, n = 94) as themselves. Half had or wanted to participate in 1‐to‐1 peer support (52%, n = 92). Half had or wanted to connect with peers face‐to‐face (53%, n = 93). Only 13% (n = 23) were receptive to connecting with peers over the internet. Being aged ≤65 years was significantly associated (OR = 2.3; 95% CI: 1.1‐5.1) with reporting a preference for participating in peer support.
Conclusions
Cancer patients are interested in participating in peer support, particularly those who are younger. Despite the digital era, traditional forms of peer support continue to be important in supporting people with cancer. Greater understanding of the barriers to cancer patients' involvement in potentially low cost and high reach web‐based models of peer support is required.
Aboriginal and Torres Strait Islander women are more than three times more likely to smoke during pregnancy than non-Indigenous women, greatly increasing the risk of poor birth outcomes. Our ...systematic review found that there is currently no evidence for interventions that are effective in supporting pregnant Aboriginal and Torres Strait Islander women to quit smoking, which impedes development and implementation of evidence-informed policy and practice. There is an urgent need for methodologically rigorous studies to test innovative approaches to addressing this problem.
Aims and objectives
To assess nurses’ perceptions of what constitutes optimal end‐of‐life (EOL) care in hospital and evaluate nurses’ perceived barriers to EOL care delivery.
Background
Care of dying ...patients is common in hospitals. However, little is known about the important elements of and barriers to optimal EOL care from key service providers’ perspective, which is crucial for quality EOL care in hospital settings.
Method
This is a cross‐sectional survey. Nurses practising in hospitals recruited by convenience sampling completed self‐report survey questionnaires. STROBE checklist was used in study reporting.
Results
One hundred and‐seventy‐five nurses participated in the survey. The majority (70%) had experience in caring for dying patients. The five most highly perceived factors constituting optimal EOL care included the following: “families know and follow patient's EOL wishes”; “patients emotional concerns identified and managed well”; “patients participating in decision‐making”; “EOL care documents stored well and easily accessed”; and “provide private rooms and unlimited visiting hours for families of dying patients”. Top five barriers were “doctors are too busy”; “nurses are too busy”; “insufficient private room/space”; “nurses have limited training in EOL care”; and “families have unrealistic expectations of patient's prognosis.” Multivariate regression analysis identified that nurses without experience in caring for dying patients reported a significantly higher number of perceived barriers towards EOL care (p = .012). Those with postgraduate degree training reported significantly fewer perceived barriers (p = .007).
Conclusion
Findings identified essential elements for optimal hospital EOL care not only involving patients and families in EOL decision and care, but also documentation and environmental issues in the healthcare system level and the needs for strengthening manpower and expertise at palliative care policy level.
Relevance to clinical practice
This study revealed quantitative data to inform health service managers and policy makers in terms of training and service development/ re‐design for EOL care in hospital settings.
Maximising the adoption of evidence-based practice has been argued to be a major factor in determining healthcare outcomes. However, there are gaps between evidence-based recommendations and current ...care. Bridging the evidence gap will not be achieved simply by informing clinicians about the evidence. One theoretical approach to understanding how change may be achieved is Rogers' diffusion model. He argues that certain characteristics of the innovation itself may facilitate its adoption. Other factors influencing acceptance include promotion by influential role models, the degree of complexity of the change, compatibility with existing values and needs, and the ability to test and modify the new procedure before adopting it. The diffusion model may provide valuable insights into why some practices change and others do not, as well as guiding those who try to effect adoption of best-evidence practice.
Objectives We set out to examine the volume, scope and quality of research related to First Nations peoples' perceptions of, and experiences with, child rearing and/or parenting programs. Methods We ...systematically reviewed the literature published between 2000 and 2020. Sixty-eight studies identified through electronic databases and references lists met inclusion criteria. Results The study found an 8% increase in publications in the field each year (P -value = 0.002), mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 29, 41%). Scope included positive and negative experiences relating to: parenting from adult (n = 19 studies) and teenager (n = 4) perspectives; and pregnancy, antenatal and postnatal care from the perspective of adults (n = 23) and teenagers (n = 2). Descriptive studies included qualitative (n = 40; 58%), quantitative (n = 8, 12%) or mixed methods (n = 7, 10%). Thirteen experimental studies reported the development, acceptability and/or effectiveness of programs (19%), of which three met the Cochrane Effective Practice and Organisation of Care design criteria. Conclusions Despite an overall increase in volume, research efforts do not demonstrate a clear scientific progression. Further methodologically rigorous studies examining child rearing and/or parenting programs developed in collaboration with First Nations populations are needed.
The aim of this study was to determine the proportions and predictors of first-degree relatives (FDRs) of colorectal cancer (CRC) patients (i) ever receiving any CRC testing and (ii) receiving CRC ...screening in accordance with CRC screening guidelines.
Colorectal cancer patients and their FDRs were recruited through the population-based Victorian Cancer Registry, Victoria, Australia. Seven hundred and seven FDRs completed telephone interviews. Of these, 405 FDRs were deemed asymptomatic and eligible for analysis.
Sixty-nine percent of FDRs had ever received any CRC testing. First-degree relatives of older age, those with private health insurance, siblings and FDRs who had ever been asked about family history of CRC by a doctor were significantly more likely than their counterparts to have ever received CRC testing. Twenty-five percent of FDRs "at or slightly above average risk" were adherent to CRC screening guidelines. For this group, adherence to guideline-recommended screening was significantly more likely to occur for male FDRs and those with a higher level of education. For persons at "moderately increased risk" and "potentially high risk", 47% and 49% respectively adhered to CRC screening guidelines. For this group, guideline-recommended screening was significantly more likely to occur for FDRs who were living in metropolitan areas, siblings, those married or partnered and those ever asked about family history of CRC.
A significant level of non-compliance with screening guidelines was evident among FDRs. Improved CRC screening in accordance with guidelines and effective systematic interventions to increase screening rates among population groups experiencing inequality are needed.
Australian and New Zealand Clinical Trial Registry: ACTRN12609000628246.
The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' ...values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support-relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.
Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.
Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.
There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.
Abstract Population- and systems-based interventions need evaluation, but the randomized controlled trial (RCT) research design has significant limitations when applied to their complexity. After ...some years of being largely dismissed in the ranking of evidence in medicine, alternatives to the RCT have been debated recently in public health and related population and social service fields to identify the trade-offs in their use when randomization is impractical or unethical. This review summarizes recent debates and considers the pragmatic and economic issues associated with evaluating whole-population interventions while maintaining scientific validity and credibility.
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