Predictive modelling : parents’ decision making to use online child health information to increase their understanding and/or diagnose or treat their child’s health

Abstract Background The quantum increases in home Internet access and available online health information with limited control over information quality highlight the necessity of exploring decision making processes in accessing and using online information, specifically in relation to children who do not make their health decisions. Objectives To understand the processes explaining parents’ decisions to use online health information for child health care. Methods Parents (N = 391) completed an initial questionnaire assessing the theory of planned behaviour constructs of attitude, subjective norm, and perceived behavioural control, as well as perceived risk, group norm, and additional demographic factors. Two months later, 187 parents completed a follow-up questionnaire assessing their decisions to use online information for their child’s health care, specifically to 1) diagnose and/or treat their child’s suspected medical condition/illness and 2) increase understanding about a diagnosis or treatment recommended by a health professional. Results Hierarchical multiple regression showed that, for both behaviours, attitude, subjective norm, perceived behavioural control, (less) perceived risk, group norm, and (non) medical background were the significant predictors of intention. For parents’ use of online child health information, for both behaviours, intention was the sole significant predictor of behaviour. The findings explain 77% of the variance in parents’ intention to treat/diagnose a child health problem and 74% of the variance in their intentions to increase their understanding about child health concerns. Conclusions Understanding parents’ socio-cognitive processes that guide their use of online information for child health care is important given the increase in Internet usage and the sometimes-questionable quality of health information provided online. Findings highlight parents’ thirst for information; there is an urgent need for health professionals to provide parents with evidence-based child health websites in addition to general population education on how to evaluate the quality of online health information.

Post-discharge surveillance : can patients reliably diagnose surgical wound infections?

Post-discharge surgical wound infection surveillance is an important part of many infection control programs. It is frequently undertaken by patient self-assessment, prompted either by a telephone or postal questionnaire. To assess the reliability of this method, 290 patients were followed for six weeks postoperatively. Their wounds were photographed and also covertly assessed for signs of infection by two experienced infection control nurses (ICNs). Patients also responded to a postal questionnaire seeking evidence of infection at both week four and week six post-surgery. Correlation between the patient's assessment of their wound and the ICNs diagnosis was poor (r=0.37) with a low positive predictive value (28.7%), although negative predictive value was high (98.2%). Assessment of photos for signs of infection by two experienced clinicians also correlated poorly with the ICNs diagnosis of infection (r=0.54). The patient's recall of prescription of an antibiotic by their general practitioner (GP) for wound infection during the postoperative period correlated best with the ICNs diagnosis (r=0.76). This latter measure, particularly when confirmed by the GP in those patients reporting an infection, appears to provide the most valid and resource efficient marker of post-discharge surgical wound infection.

The silence and the silencing of the nurse's voice : a reading of patient progress notes

Content analysis of text offers a method for exploring experiences which usually remain unquestioned and unexamined. In this paper the authors analyse a set of patient progress notes by re-framing them as a narrative account of a significant event in the experience of a patient, her family and attending health care workers. Examination of these notes provides insights into aspects of clinical practice which are usually dealt with at a taken-for-granted level. An interpretation of previously unexamined therapeutic practices within the social and political context of institutional health care is offered.

Information support for health management in regional Sri Lanka : health managers’ perspectives

Good management, supported by accurate, timely and reliable health information, is vital for increasing the effectiveness of Health Information Systems (HIS). When it comes to managing the under resourced health systems of developing countries, information-based decision making is particularly important. This paper reports findings of a self-report survey that investigated perceptions of local health managers (HMs) of their own regional HIS in Sri Lanka. Data were collected through a validated, pre-tested postal questionnaire, and distributed among a selected group of HMs to elicit their perceptions of the current HIS in relation to information generation, acquisition and use, required reforms to the information system and application of information and communication technology (ICT). Results based on descriptive statistics indicated that the regional HIS was poorly organised and in need of reform; that management support for the system was unsatisfactory in terms of relevance, accuracy, timeliness and accessibility; that political pressure and community and donor requests took precedence over vital health information when management decisions were made; and use of ICT was unsatisfactory. HIS strengths included user-friendly paper formats, a centralised planning system and an efficient disease notification system; weaknesses were lack of comprehensiveness, inaccuracy, and lack of a feedback system. Responses of participants indicated that HIS would be improved by adopting an internationally accepted framework and introducing ICT applications. Perceived barriers to such improvements were high initial cost of educating staff to improve computer literacy, introduction of ICTs, and HIS restructure. We concluded that the regional HIS of Central Province, Sri Lanka had failed to provide much needed information support to HMs. These findings are consistent with similar research in other developing countries and reinforce the need for further research to verify causes of poor performance and to design strategic reforms to improve HIS in regional Sri Lanka.

Life impact of ankle fractures : qualitative analysis of patient and clinician experiences

Background: Ankle fractures are one of the more commonly occurring forms of trauma managed by orthopaedic teams worldwide. The impacts of these injuries are not restricted to pain and disability caused at the time of the incident, but may also result in long term physical, psychological, and social consequences. There are currently no ankle fracture specific patient-reported outcome measures with a robust content foundation. This investigation aimed to develop a thematic conceptual framework of life impacts following ankle fracture from the experiences of people who have suffered ankle fractures as well as the health professionals who treat them. Methods: A qualitative investigation was undertaken using in-depth semi-structured interviews with people (n=12) who had previously sustained an ankle fracture (patients) and health professionals (n=6) that treat people with ankle fractures. Interviews were audio-recorded and transcribed. Each phrase was individually coded and grouped in categories and aligned under emerging themes by two independent researchers. Results: Saturation occurred after 10 in-depth patient interviews. Time since injury for patients ranged from 6 weeks to more than 2 years. Experience of health professionals ranged from 1 year to 16 years working with people with ankle fractures. Health professionals included an Orthopaedic surgeon (1), physiotherapists (3), a podiatrist (1) and an occupational therapist (1). The emerging framework derived from patient data included eight themes (Physical, Psychological, Daily Living, Social, Occupational and Domestic, Financial, Aesthetic and Medication Taking). Health professional responses did not reveal any additional themes, but tended to focus on physical and occupational themes. Conclusions: The nature of life impact following ankle fractures can extend beyond short term pain and discomfort into many areas of life. The findings from this research have provided an empirically derived framework from which a condition-specific patient-reported outcome measure can be developed.

The factor structure of the COPE Questionnaire in a sample of clinically depressed and anxious adults

The Coping Orientation to Problems Experienced is a multidimensional scale designed to assess how people respond to stress. The COPE has been validated in a variety of populations displaying variations in factor structure. However, in terms of mental health populations, it has only been validated in alcohol-dependent samples. This paper investigated the factor structure of the COPE in a sample of adults diagnosed with depression and anxiety. Two hundred and seventy-one patients attending cognitive behaviour therapy for anxiety and depression completed the COPE. Confirmatory factor analysis found a poor fit for both lower order and higher order factors based upon the Lyne and Roger (2000) study. Exploratory factor analyses identified six primary subscales (Active Planning, Social Support, Denial, Acceptance, Disengagement, Restraint) which explained approximately 60% of the variance in coping. These 6 subscales may assist researchers and clinicians to validly measure coping in anxious and depressed adults.

Ask : a health advocacy program for adolescents with an intellectual disability : a cluster randomised controlled trial

Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention.

Improving self care of patients with chronic disease using online personal health record

BACKGROUND: Effective management of chronic diseases such as prostate cancer is important. Research suggests a tendency to use self-care treatment options such as over-the-counter (OTC) complementary medications among prostate cancer patients. The current trend in patient-driven recording of health data in an online Personal Health Record (PHR) presents an opportunity to develop new data-driven approaches for improving prostate cancer patient care. However, the ability of current online solutions to share patients' data for better decision support is limited. An informatics approach may improve online sharing of self-care interventions among these patients. It can also provide better evidence to support decisions made during their self-managed care. AIMS: To identify requirements for an online system and describe a new case-based reasoning (CBR) method for improving self-care of advanced prostate cancer patients in an online PHR environment. METHOD: A non-identifying online survey was conducted to understand self-care patterns among prostate cancer patients and to identify requirements for an online information system. The pilot study was carried out between August 2010 and December 2010. A case-base of 52 patients was developed. RESULTS: The data analysis showed self-care patterns among the prostate cancer patients. Selenium (55%) was the common complementary supplement used by the patients. Paracetamol (about 45%) was the commonly used OTC by the patients. CONCLUSION: The results of this study specified requirements for an online case-based reasoning information system. The outcomes of this study are being incorporated in design of the proposed Artificial Intelligence (Al) driven patient journey browser system. A basic version of the proposed system is currently being considered for implementation.

Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs : results from a randomised, controlled trial

Background: High levels of distress and need for self-care information by patients commencing chemotherapy suggest that current prechemotherapy education is suboptimal. We conducted a randomised, controlled trial of a prechemotherapy education intervention (ChemoEd) to assess impact on patient distress, treatment-related concerns, and the prevalence and severity of and bother caused by six chemotherapy side-effects. Patients and methods: One hundred and ninety-two breast, gastrointestinal, and haematologic cancer patients were recruited before the trial closing prematurely (original target 352). ChemoEd patients received a DVD, question-prompt list, self-care information, an education consultation ≥24 h before first treatment (intervention 1), telephone follow-up 48 h after first treatment (intervention 2), and a face-to-face review immediately before second treatment (intervention 3). Patient outcomes were measured at baseline (T1: pre-education) and immediately preceding treatment cycles 1 (T2) and 3 (T3). Results: ChemoEd did not significantly reduce patient distress. However, a significant decrease in sensory/psychological (P = 0.027) and procedural (P = 0.03) concerns, as well as prevalence and severity of and bother due to vomiting (all P = 0.001), were observed at T3. In addition, subgroup analysis of patients with elevated distress at T1 indicated a significant decrease (P = 0.035) at T2 but not at T3 (P = 0.055) in ChemoEd patients. Conclusions: ChemoEd holds promise to improve patient treatment-related concerns and some physical/psychological outcomes; however, further research is required on more diverse patient populations to ensure generalisability.

Patient-specific simulations of spinal deformity surgery

Adolescent idiopathic scoliosis (AIS) is a three-dimensional spinal deformity involving the side-to-side curvature of the spine in the coronal plane and axial rotation of the vertebrae in the transverse plane. For patients with a severe or rapidly progressing deformity, corrective instrumented fusion surgery is performed. The wide choice of implants and large variability between patients make it difficult for surgeons to choose optimal treatment strategies. This paper describes the patient specific finite element modelling techniques employed and the results of preliminary analyses predicting the surgical outcomes for a series of AIS patients. This report highlights the importance of not only patient-specific anatomy and material parameters, but also patient-specific data for the clinical and physiological loading conditions experienced by the patient who has corrective scoliosis surgery.

Preliminary reliability and validity testing of a self-efficacy questionnaire for Chinese family caregivers

Objectives: To develop and test preliminary reliability and validity of a Self-Efficacy Questionnaire for Chinese Family Caregivers (SEQCFC). Methods: A cross-sectional survey of 196 family caregivers (CGs) of people with dementia (CGs) was conducted to determine the factor structure of a SEQCFC of people with dementia. Following factor analyses, preliminary testing was performed, including internal consistency, 4-week test retest reliability, and construct and convergent validity. Results: Factor analyses with direct oblimin rotation were performed. Eight items were removed and five subscales(selfefficacy for gathering information about treatment, symptoms and health care; obtaining support; responding to behaviour disturbances; managing household, personal and medical care; and managing distress associated with caregiving) were identified. The Cronbach’s alpha coefficients for the whole scale and for each subscale were all over 0.80. The 4-week testretest reliabilities for the whole scale and for each subscale ranged from 0.64 to 0.85. The convergent validity was acceptable. Conclusions: Evidence for the preliminary testing of the SEQCFC was encouraging. A future follow-up study using confirmatory factor analysis with a new sample from different recruitment centres in Shanghai will be conducted. Future psychometric property testings of the questionnaire will be required for CGs from other regions of mainland China.