Matthew J Allsop

Assessing the quality and usability of smartphone apps for pain self-management.

OBJECTIVEnTo evaluate smartphone apps intended for self-management of pain using quality assessment criteria and usability testing with prospective users.nnnDESIGNn1) Survey and content analysis of available apps; and 2) individual usability study of two apps.nnnSETTINGnUniversity of Leeds, United Kingdom.nnnPARTICIPANTSnForty-one participants (aged 19-59 years) with experience of chronic or recurrent pain episodes.nnnMETHODSnWe undertook a survey, content analysis, and quality appraisal of all currently available mobile phone apps for self-management of pain. Two apps were then selected and assessed with usability testing.nnnRESULTSnTwelve apps met the inclusion criteria. The quality assessment revealed wide variation in their clinical content, interface design, and usability to support self-management of pain. Very little user or clinician involvement was identified in the development of the apps. From the usability testing, participants stated a preference for an interface design employing a lighter color scheme and particular text font. Although very few participants were aware of pain-reporting apps prior to participation, many would consider use in the future.nnnCONCLUSIONSnVariation in app quality and a lack of user and clinician engagement in development were found across the pain apps in this research. Usability testing identified a range of user preferences. Although useful information was obtained, it would be beneficial to involve users earlier in the process of development, as well as establishing ways to merge end user requirements with evidence-based content, to provide high-quality and usable apps for self-management of pain.

Engaging children in healthcare technology design: developing rehabilitation technology for children with cerebral palsy

This paper presents a case study of users’ involvement in the design and evaluation of two devices for upper limb rehabilitation for children with cerebral palsy to use in their homes. The devices comprise a computer game and a force feedback interface, designed to stimulate children with cerebral palsy to undertake fun arm exercises that are beneficial in terms of improving overall functional use of their impaired arm. This device was developed for children using a combination of informal and formal user-centred design methods. The methods used include standard questionnaires, interviews, a modified peer tutoring process and a comparative method, and have been applied to the iterative design of both the hardware and software components of the rehabilitation systems. Thirty-seven non-disabled children and 15 children with cerebral palsy in the 5–12-year-old age group were involved in the evaluation, held at six local primary schools. Prototypes of the final design were used by 18 patients with cerebral palsy for approximately 4 weeks as a therapeutic intervention. To evaluate the designs, qualitative and questionnaire-based opinion was sought from these children, and their parents, at the end of the intervention. An evaluation of the methodologies employed is presented.

The engagement of children with disabilities in health-related technology design processes: identifying methodology.

Purpose.u2003This review aims to identify research methodology that is suitable for involving children with disabilities in the design of healthcare technology, such as assistive technology and rehabilitation equipment. Method.u2003A review of the literature included the identification of methodology that is available from domains outside of healthcare and suggested a selection of available methods. Results.u2003The need to involve end users within the design of healthcare technology was highlighted, with particular attention to the need for greater levels of participation from children with disabilities within all healthcare research. Issues that may arise when trying to increase such involvement included the need to consider communication via feedback and tailored information, the need to measure levels of participation occurring in current research, and caution regarding the use of proxy information. Additionally, five suitable methods were highlighted that are available for use with children with disabilities in the design of healthcare technology. Conclusion.u2003The methods identified in the review need to be put into practice to establish effective and, if necessary, novel ways of designing healthcare technology when end users are children with disabilities.

What determines duration of palliative care before death for patients with advanced disease? A retrospective cohort study of community and hospital palliative care provision in a large UK city

Objective For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6u2005months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors. Design This retrospective cohort study analysed referrals to three specialist palliative care services; a hospital-based inpatient palliative care team, and two community-based services (hospices). For each patient referred to any of the above services we identified the date of first referral to that team and calculated the median interval between first referral and death. We also calculated how referral time varied by age, sex, diagnosis and type of palliative care service. Participants 4650 patients referred to specialist palliative care services in Leeds UK between April 2012 and March 2014. Results Median age of the sample was 75u2005years. 3903 (84.0%) patients had a diagnosis of cancer. Age, diagnosis and place of referral were significant predictors of duration of palliative care before death. Age was independently associated (J=2u2005672u2005078, z=−392046.14, r=0.01) with duration of palliative care regardless of diagnosis. Patients over 75u2005years have 29 fewer days of palliative care than patients under 50. Patients with non-cancer diagnoses have 13 fewer days of palliative care than patients with cancer. Additionally, patients referred to hospital palliative care receive 24.5 fewer days palliative care than those referred to community palliative care services. Conclusions The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer.

Diagnosis, medication, and surgical management for patients with trigeminal neuralgia: a qualitative study

BackgroundTrigeminal neuralgia (TN) is a serious health problem, causing brief, recurrent episodes of stabbing or burning facial pain, which patients describe as feeling like an electric shock. The consequences of living with the condition are severe. There is currently no cure for TN and management of the condition can be complex, often delayed by misdiagnosis. Patients’ qualitative experiential accounts of TN have not been reported in the literature. Capturing subjective experiences can be used to inform the impact of the condition on quality of life and may contribute to a better understanding of current clinical practice with the aim of improving patient care.MethodsParticipants with TN (nu2009=u200916; 11 female), including those who have and have not undergone surgical intervention(s), took part in one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts.ResultsThe impact of TN and treatment on the lives of participants emerged as four predominant themes: (1) diagnosis and support with TN, (2) living in fear of TN pain, (3) isolation and social withdrawal, and (4) medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts.ConclusionsKey issues to address in the management of patients with TN include continued delays in diagnosis, persistent side effects from medication, and a lack of psychological support. Developing strategies to enhance the management of patients with TN, informed by a biopsychosocial approach and multidisciplinary team working, is essential to enhancing the provision of current care.

Information and communication technology for managing pain in palliative care: a review of the literature

Background Information and communication technology (ICT) systems are being developed for electronic symptom reporting across different stages of the cancer trajectory with research in palliative care at an early stage. Aim/design This paper presents the first systematic search of the literature to review existing ICT systems intended to support management of pain in palliative care patients with cancer. The review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews and meta-analyses. Data sources Four databases (Embase, MEDLINE, PsycINFO and Healthcare Management Information Consortium) from 1990 to December 2012 were searched, with exclusion of papers based on their description of ICT systems and language used. Results 24 articles met the inclusion criteria, many of which reported the use of non-experimental research designs. Studies were identified at different stages of development with no systems having reached implementation. Most systems captured pain as part of quality-of-life measurement with wide variation in approaches to pain assessment. Conclusions ICT systems for symptom reporting are emerging in the palliative care context. Future development of ICT systems need to increase the quality and scale of development work, consider how recommendations for pain measurement can be integrated and explore how to effectively use system feedback with patients.

Current understanding of genetics and genetic testing and information needs and preferences of adults with inherited retinal disease

Advances in sequencing technology and the movement of genetic testing into all areas of medicine will increase opportunities for molecular confirmation of a clinical diagnosis. For health-care professionals without formal genetics training, there is a need to know what patients understand about genetics and genetic testing and their information needs and preferences for the disclosure of genetic testing results. These topics were explored during face-to-face interviews with 50 adults with inherited retinal disease, selected in order to provide a diversity of opinions. Participants had variable understanding of genetics and genetic testing, including basic concepts such as inheritance patterns and the risk to dependents, and many did not understand the term ‘genetic counselling’. Most were keen for extra information on the risk to others, the process for genetic testing and how to share the information with other family members. Participants were divided as to whether genetic testing should be offered at the time of the initial diagnosis or later. Many would prefer the results to be given by face-to-face consultation, supplemented by further information in a format accessible to those with visual impairment. Health-care professionals and either leaflets or websites of trusted agencies were the preferred sources of information. Permission should be sought for disclosure of genetic information to other family members. The information needs of many patients with inherited retinal disease appear to be unmet. An understanding of their information needs and preferences is required to help health-care professionals provide optimal services that meet patient expectations.

Involving children in the development of assistive technology devices

Purpose.u2003To investigate the implementation of a web-based survey for involving children in the design of assistive technology devices within the primary school environment. Method.u2003Children were recruited within their normal school environment. They completed tasks within the survey that sought to gather their personal preferences about assistive technology devices. From six primary schools, 257 children (mean ageu200a=u200a9 years and 8 months, SDu200a=u200a1.51; 123 males, 134 females) including children with cerebral palsy (Nu200a=u200a11), varying levels of deafness (Nu200a=u200a7), global developmental delay (Nu200a=u200a2) and Downs syndrome (Nu200a=u200a1) participated. Observations were taken whilst the children completed the survey tasks. Results.u2003All children were able to complete the tasks from the survey, although children with disabilities had higher completion times and most required a form of assistance from support assistants and/or sign language interpreters. Conclusions.u2003The use of the web-based survey provided a novel means with which to involve children with and without disabilities in the design of assistive technology devices within a primary school environment. In order for the survey to be utilised more widely, issues that arose when involving children with disabilities need to be addressed.

Identifying professionals’ needs in integrating electronic pain monitoring in community palliative care services: An interview study:

Background: Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems, but research identifying the needs of health professionals to implement routine monitoring systems within clinical practice is limited. Aim: To inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice. Design: Qualitative study using face-to-face interviews. Data were analysed using framework analysis Setting/participants: Purposive sample of health professionals managing the palliative care of patients living in the community Results: A total of 15 interviews with health professionals took place. Three meta-themes emerged from the data: (1) uncertainties about integration of PainCheck and changes to current practice, (2) appraisal of current practice and (3) pain management is everybody’s responsibility Conclusion: Even the most sceptical of health professionals could see the potential benefits of implementing an electronic patient-reported pain monitoring system. Health professionals have reservations about how PainCheck would work in practice. For optimal use, PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed.

Willingness to pay for genetic testing for inherited retinal disease.

This paper investigates the willingness of adults with inherited retinal disease to undergo and pay for diagnostic genetic testing in three hypothetical scenarios and to explore the factors that influence decision making. Fifty patients were presented with three scenarios whereby genetic testing provided increasing information: confirming the diagnosis and inheritance pattern alone, providing additional information on future visual function, and identifying in addition a new treatment which could stabilise their condition. Willingness to pay (WTP) was elicited using an iterative bidding game. Regression analysis was used to investigate the probability of agreeing to and paying for testing. Qualitative data were also reviewed to provide a comprehensive understanding of WTP and decision making. The majority of participants agreed to undergo genetic testing in each of the three scenarios. Scenario 2 was the least acceptable with 78% of participants agreeing to genetic testing. The probability of agreeing to genetic testing decreased with age. Between 72 and 96% of participants reported a WTP for genetic testing. Average WTP was £539, £1516, and £6895 for scenarios 1, 2, and 3 respectively. Older participants and participants with higher incomes were willing to pay more for testing. Qualitative data provided additional detail about the rationale behind participants’ decisions. The study suggests that patients with inherited retinal disease were willing to undergo and to pay for diagnostic genetic testing, suggesting that they valued the information it may provide. However, several patients preferred not to receive prognostic information and were less willing to pay for genetic testing that yielded such detail.