Using videotelephony to support paediatric oncology-related palliative care in the home : from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours ‘on-call’ service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation

Acceptability of cognitive-behaviour therapy via the Internet for cessation of benzodiazepine use

Introduction and Aims: Long-term use of benzodiazepines remains common, and conveys significant risk. Providing psychological intervention in association with gradual dose reduction increases cessation rates above dose reduction alone, but appropriate psychological support is difficult to obtain. This study was undertaken to assess the outcomes of an uncontrolled case series of an internet-based cognitive-behaviour therapy (I-CBT) for benzodiazepine cessation. Design and Method: Users of benzodiazepines for > 3 months who wanted to reduce or cease benzodiazepines participated in the trial. They completed online assessments and accessed 13 newsletters on managing withdrawal symptoms and developing alternate ways to cope with life events. Therapist assistance was provided by email. Follow-up was at 3 and 6 months and feedback was obtained via comments and emails. Results: Program ratings and emailed comments of the program were positive. Thirty-two people registered for the program and 14 (44%) completed a 6-month follow-up. Of these, 8 (57%) reduced weekly intake by at least half, including 5 (36%) who ceased use. Shorter duration of use and birth outside Australia predicted greater percentage reductions at 3 months, while being partnered and in paid employment predicted reductions at 6 months. Discussion and Conclusion: While results were encouraging, controlled research is required to confirm the efficacy of the program, and engagement of both users and prescribers needs further attention.

Acceptability of the distress thermometer and problem list to community-based telephone cancer helpline operators, and to cancer patients and carers

Background Cancer can be a distressing experience for cancer patients and carers, impacting on psychological, social, physical and spiritual functioning. However, health professionals often fail to detect distress in their patients due to time constraints and a lack of experience. Also, with the focus on the patient, carer needs are often overlooked. This study investigated the acceptability of brief distress screening with the Distress Thermometer (DT) and Problem List (PL) to operators of a community-based telephone helpline, as well as to cancer patients and carers calling the service. Methods Operators (n = 18) monitored usage of the DT and PL with callers (cancer patients/carers, >18 years, and English-speaking) from September-December 2006 (n = 666). The DT is a single item, 11-point scale to rate level of distress. The associated PL identifies the cause of distress. Results The DT and PL were used on 90% of eligible callers, most providing valid responses. Benefits included having an objective, structured and consistent means for distress screening and triage to supportive care services. Reported challenges included apparent inappropriateness of the tools due to the nature of the call or level of caller distress, the DT numeric scale, and the level of operator training. Conclusions We observed positive outcomes to using the DT and PL, although operators reported some challenges. Overcoming these challenges may improve distress screening particularly by less experienced clinicians, and further development of the PL items and DT scale may assist with administration. The DT and PL allow clinicians to direct/prioritise interventions or referrals, although ongoing training and support is critical in distress screening.

Acceptability-based QoE models for mobile video

Quality of experience (QoE) measures the overall perceived quality of mobile video delivery from subjective user experience and objective system performance. Current QoE computing models have two main limitations: 1) insufficient consideration of the factors influencing QoE, and; 2) limited studies on QoE models for acceptability prediction. In this paper, a set of novel acceptability-based QoE models, denoted as A-QoE, is proposed based on the results of comprehensive user studies on subjective quality acceptance assessments. The models are able to predict users’ acceptability and pleasantness in various mobile video usage scenarios. Statistical regression analysis has been used to build the models with a group of influencing factors as independent predictors, including encoding parameters and bitrate, video content characteristics, and mobile device display resolution. The performance of the proposed A-QoE models has been compared with three well-known objective Video Quality Assessment metrics: PSNR, SSIM and VQM. The proposed A-QoE models have high prediction accuracy and usage flexibility. Future user-centred mobile video delivery systems can benefit from applying the proposed QoE-based management to optimize video coding and quality delivery decisions.

Acceptability-based QoE management for user-centric mobile video delivery : a field study evaluation

Effective Quality of Experience (QoE) management for mobile video delivery – to optimize overall user experience while adapting to heterogeneous use contexts – is still a big challenge to date. This paper proposes a mobile video delivery system to emphasize the use of acceptability as the main indicator of QoE to manage the end-to-end factors in delivering mobile video services. The first contribution is a novel framework for user-centric mobile video system that is based on acceptability-based QoE (A-QoE) prediction models, which were derived from comprehensive subjective studies. The second contribution is results from a field study that evaluates the user experience of the proposed system during realistic usage circumstances, addressing the impacts of perceived video quality, loading speed, interest in content, viewing locations, network bandwidth, display devices, and different video coding approaches, including region-of-interest (ROI) enhancement and center zooming

Palliative care phase : inter-rater reliability and acceptability in a national study

Background: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. Aim: To test the reliability and acceptability of revised definitions of Palliative Care Phase. Design: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. Setting/participants: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. Results: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians’ rating of Palliative Care Phase was substantial (kappa = 0.67; 95% confidence interval = 0.61–0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. Conclusion: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.

Feasibility and acceptability of wrist actigraph in assessing sleep quality and sleep quantity: A home-based pilot study in healthy volunteers

Purpose This study aimed to determine the feasibility and acceptability of actigraphy to monitor sleep quality and quantity in healthy self-rated good sleeper adults at home-based settings. Method Sixteen healthy volunteers (age > 18) were invited to participate. Each participant was provided with a wrist actigraph device to be worn for 24-hour/day for seven consecutive days to monitor their sleep-wake patterns. Actigraphy data were downloaded using-proprietary software to generate an individual-sleep report. Participants also completed a set of self-reported Health Related Quality of Life (HRQOL) using WHO (five) Well Being Index (WBI) questionnaires. Results Actigraphy was well accepted by all participants. Only 43.8% of the participants achieved normal total sleep time (TST) and 62.5% had a mean sleep efficiency value below the normal range. Despite a reduced quality of sleep among the participants, the self-reported HRQOL scores produced by the WHO-5 WBI showed a “fair” to “good” among the participants. Conclusions To maintain healthy well-being, it is vital to have efficient and quality sleep. Insufficient and poor sleep may contribute to various health problems and hazardous outcomes. People often believe they have normal and efficient sleep, not realising they may be developing poor sleep habits. This study found that actigraphy can be easily utilized to monitor sleep-wake patterns at home-based settings. We proposed that actigraphy could be adapted for use in the primary care settings (e.g. community pharmacy) to improve the sleep health management in the community.

From ‘free’ to fee: Acceptability of airline ancillary fees and the effects on customer behavior

Businesses in various consumer service industries have begun to unbundle their service offerings by introducing numerous fees for products and services that were previously provided as “free.” Anecdotal evidence in the media indicates that these fees cause widespread public displeasure, frustration, and outrage. This paper develops a framework of fee acceptability, negative emotions, and dysfunctional customer behavior, which is tested using data from the airline industry. Findings identify the strongest effects on betrayal in the case of baggage fees, followed by charges for comfort. Also, betrayal has a direct effect on complaining, whereas anger mediates the relationship between betrayal and negative word of mouth.

Palliative care problem severity score: Reliability and acceptability in a national study

Background The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). Aim To test the reliability and acceptability of the Palliative Care Problem Severity Score. Design: Multi-centre, cross-sectional study involving pairs of clinicians independently rating problem severity using the tool. Setting/participants Clinicians from 10 Australian palliative care services: 9 inpatient units and 1 mixed inpatient/community-based service. Results A total of 102 clinicians participated, with almost 600 paired assessments completed for each domain, involving 420 patients. A total of 91% of paired assessments were undertaken within 2 h. Strength of agreement for three of the four domains was moderate: pain (Kappa = 0.42, 95% confidence interval = 0.36 to 0.49); psychological/spiritual (Kappa = 0.48, 95% confidence interval = 0.42 to 0.54); family/carer (Kappa = 0.45, 95% confidence interval = 0.40 to 0.52). Strength of agreement for the remaining domain (other symptoms) was fair (Kappa = 0.38, 95% confidence interval = 0.32 to 0.45). Conclusion The Palliative Care Problem Severity Score is an acceptable measure, with moderate reliability across three domains. Variability in inter-rater reliability across sites and participant feedback indicate that ongoing education is required to ensure that clinicians understand the purpose of the tool and each of its domains. Raters familiar with the patient they were assessing found it easier to assign problem severity, but this did not improve inter-rater reliability.

Acceptability of Bus Rapid Transit (BRT) to commuters in Dhaka

This research has made substantial and novel contributions to the body of knowledge by combining mixed, quantitative and qualitative analyses to understand the potential uptake of a proposed Bus Rapid Transit (BRT) system by commuters in a developing country's megacity, using Dhaka, Bangladesh as the case study. The quantitative analysis took a unique approach by dividing the analysis into an exploratory analysis of Revealed Preference (RP) survey data, modelling with RP data and modelling with Preferred Mode Selection (PMS) survey data. The qualitative analysis also made a novel contribution by taking a "lesson drawing" approach from model cities in analysing Dhaka's transport environment.

Acceptability of a rice-based oral rehydration solution in Port Moresby General Hospital's Children's Outpatient Department

The guardians of children brought to the Port Moresby General Hospital's Children's Outpatient Department with a chief complaint of diarrhoeal disease were questioned regarding their preference of glucose-based vs rice-based oral rehydration solution (ORS) in order to determine the acceptability of a rice-based ORS. Of the 93 guardians interviewed, greater than 60% preferred the glucose-based solution in its mixability, appearance and taste, and 65% initially reported that their children preferred the taste of the glucose solution. However, after a 30-minute trial, only 58% of children still preferred the glucose solution. In a country where diarrhoeal disease is a leading cause of child death and guardians are the primary health care providers, the acceptability of an ORS is critical to the morbidity and mortality of Papua New Guinea's children. Killing an estimated 2.9 million children annually, diarrheal disease is the second leading cause of child mortality worldwide. Diarrheal disease is also the second leading cause of child mortality in Papua New Guinea (PNG), killing an average 193 inpatient children per year over the period 1984-90. However, despite the high level of diarrhea-related mortality and the proven efficacy of oral rehydration therapy (ORT) in managing diarrhea-related dehydration, standardized ORT has been underutilized in PNG. The current glucose-based oral rehydration solution (ORS) does not reduce the frequency or volume of a child's diarrhea, the most immediate concern of caregivers during episodes of illness. Cereal-based ORS, made from cereals which are commonly available as food staples in most countries, better address the short-term concerns of caregivers while offering a superior nutritional profile. A sample of guardians of children brought to the Port Moresby General Hospital's Children's Outpatient Department complaining of child diarrhea were asked about their preferences on glucose-based versus rice-based ORS in order to determine the acceptability of a rice-based ORS. More than 60% of the 93 guardians interviewed preferred the glucose-based solution for its mixability, appearance, and taste. 65% initially reported that their children preferred the taste of the glucose solution. However, after a 30-minute trial, only 58% of children still preferred the glucose solution.

The acceptability, usability and short-term outcomes of Get Real: A web-based program for psychotic-like experiences (PLEs)

Background Psychotic-like experiences (PLEs) are subclinical delusional ideas and perceptual disturbances that have been associated with a range of adverse mental health outcomes. This study reports a qualitative and quantitative analysis of the acceptability, usability and short term outcomes of Get Real, a web program for PLEs in young people. Methods Participants were twelve respondents to an online survey, who reported at least one PLE in the previous 3 months, and were currently distressed. Ratings of the program were collected after participants trialled it for a month. Individual semi-structured interviews then elicited qualitative feedback, which was analyzed using Consensual Qualitative Research (CQR) methodology. PLEs and distress were reassessed at 3 months post-baseline. Results User ratings supported the program's acceptability, usability and perceived utility. Significant reductions in the number, frequency and severity of PLE-related distress were found at 3 months follow-up. The CQR analysis identified four qualitative domains: initial and current understandings of PLEs, responses to the program, and context of its use. Initial understanding involved emotional reactions, avoidance or minimization, limited coping skills and non-psychotic attributions. After using the program, participants saw PLEs as normal and common, had greater self-awareness and understanding of stress, and reported increased capacity to cope and accept experiences. Positive responses to the program focused on its normalization of PLEs, usefulness of its strategies, self-monitoring of mood, and information putting PLEs into perspective. Some respondents wanted more specific and individualized information, thought the program would be more useful for other audiences, or doubted its effectiveness. The program was mostly used in low-stress situations. Conclusions The current study provided initial support for the acceptability, utility and positive short-term outcomes of Get Real. The program now requires efficacy testing in randomized controlled trials.