User testing of a Scottish Intercollegiate Guideline Network public guideline for the parents of children with autism.

BACKGROUND: The Scottish Intercollegiate Guidelines Network (SIGN) is the leading national clinical guideline producer in Scotland. Improved design and dissemination of guidelines produced for the public can empower people to take an active role in self-management and shared decision-making. The public version of the guideline examined covered getting assessed and diagnosed with autism, and approaches that can help. The aim of this study was to test a public version of a guideline for the parents of children and young people with autism, implement improvements, and identify what works in making it usable and accessible. METHODS: We recruited mothers from across Scotland. User testing involved formal 'think aloud' semi-structured interviews that guided users through the booklet. Interviews took place individually and were recorded and transcribed. Key findings were identified and themed using the honeycomb user experience model. RESULTS: Fourteen user-testing interviews were conducted. Facilitators for usability and desirability of the guideline included the chunking of text, consistent use of colour and boxes to highlight important information. Simple language, written in a tone of partnership, helped to engage mothers. Value arose from the guidelines ability to explain the process of diagnosis and make mothers feel empowered in their relationships with healthcare professionals. There was a lack of consensus on the usefulness of rating the strength of evidence and recommendations. CONCLUSION: There was a marked similarity between what was important to the mothers and what has been found to be important to other groups. The involvement of service users and carers in the guidelines development was key to its credibility. One size does not fit all in presenting evidence-based recommendations to the public and it is a challenge to provide sufficient information while avoiding information overload. Recommendations and evidence levels are suitable for use in public versions, but these should be kept as simple as possible.

User testing a patient information resource about potential complications of vaginally inserted synthetic mesh.

BACKGROUND: Vaginal mesh implants are medical devices used in a number of operations to treat stress urinary incontinence and pelvic organ prolapse. Although many of these operations have delivered good outcomes, some women have experienced serious complications that have profoundly affected their quality of life. To ensure that evolving patient information is up-to-date, accurate and appropriate, the Transvaginal Mesh Oversight Group 'user-tested' a newly developed Scottish patient resource, the first to focus exclusively on the issue of complications. The aim of this research was to gather feedback on usability, content, language and presentation to inform the development of the resource from a user perspective. METHODS: The experience of using the patient resource was captured through semi-structured interviews that followed a 'think-aloud' protocol. The interviewer observed each participant as they went through the resource, asking questions and making field notes. Participants' comments were then categorised using a validated model of user experience and subsequently analysed thematically. RESULTS: Thirteen people participated in the user testing interviews, including women with lived experience of mesh implants (n = 7), a convenience sample of staff working for Healthcare Improvement Scotland (n = 5) and a patient's carer (n = 1). The majority of participants considered the resource as clear and helpful. Respondents reported that some presentational aspects promoted usability and understandability, including the use of a font that is easy to read, bullet lists, coloured headings and simple language. Barriers included the reliance on some technical language and an explicit anatomical diagram. Participants endorsed the valuable role of health professionals as co-mediators of patient information. CONCLUSIONS: The findings illustrate the value of undertaking in-depth user-testing for patient information resources before their dissemination. The study highlighted how the direct guidance or navigation of a patient information resource by a health professional could increase its salience and accuracy of interpretation by patients, their families and carers. These insights may also be useful to other developers in improving patient information.

Placing the patient at the centre of chronic wound care: A qualitative evidence synthesis.

BACKGROUND: Chronic wounds are a major health burden and have a severe impact on well-being. This synthesis of qualitative studies was undertaken to inform a health technology assessment of antimicrobial wound dressings. It aimed to explore patients' experiences of chronic wounds and determine improvements for clinical practice. METHOD: Inclusion criteria included use of qualitative methods, and English language publication. Databases searched included MEDLINE (Ovid), MEDLINE in Process (Ovid), EMBASE (Ovid), CINAHL (EBSCOHost), and PsychInfo (EBSCOHost). Searches were limited to 1990-2014. The method of analysis was Framework synthesis. RESULTS: A total of 20 studies were included. The synthesis confirmed the severe physical, social and psychological impact of the chronic wound. Inadequately controlled pain and sleeplessness, restrictions to lifestyle, and the loss of previous life roles can lead to feelings of hopelessness and helplessness and therefore depression and anxiety. Dressings and dressing changes are a key aspect of treatment and provide opportunities for positive interaction and person centred-care. CONCLUSION: People with chronic wounds can be supported to live well within the severe physical, psychological and social restrictions of a chronic wound. Effective clinical pain management and the recognition of the experience of acute and chronic pain are of the utmost importance to people with a chronic wound. Treatment should not be purely focused on healing but incorporate symptom management, coping and wellbeing via person-centred and holistic care.

What do patients and the public know about clinical practice guidelines and what do they want from them? A qualitative study.

BACKGROUND: Guideline producers are increasingly producing versions of guidelines for the public. The aim of this study was to explore what patients and the public understand about the purpose and production of clinical guidelines, and what they want from clinical guidelines to support their healthcare decisions. METHODS: Participants were purposively selected to represent a range of the likely users of patient versions of guidelines, including individuals with health conditions (diabetes and depression), general members of the public, health communication professionals and a group of young people. Participants were asked about their awareness and understanding of clinical guidelines and presented with scenario recommendations, or draft materials from patient guidelines to prompt discussion. Each discussion was facilitated by one or two researchers. All focus groups were recorded and transcribed prior to analysis. Data were analysed using framework analysis. RESULTS: We ran nine focus groups involving 62 individuals, supplemented by four interviews with people experiencing homelessness. Eight groups were held in Scotland, one in England. The four interviews were held in Scotland. The framework analysis yielded five themes: access and awareness; what patients want to know; properties of guidelines; presenting evidence; and format. Awareness of guidelines was low. Participants emphasised the need for information that enables them to choose between treatment options, including harms. They would like help with this from healthcare professionals, especially general practitioners. Participants differed in their support for the inclusion of numerical information and graphs. CONCLUSIONS: Members of the public want information to help them choose between treatments, including information on harms, particularly to support shared decisions with health professionals. Presenting numerical information is a challenge and layered approaches that present information in stages may be helpful. Ignoring the themes identified in this study is likely to lead to materials that fail to support public and patient healthcare decision making.

Patient views on antimicrobial dressings in chronic wounds.

BACKGROUND: Antimicrobial wound dressings (AWDs) may not consistently be used effectively. The authors aimed to explore what patients want from AWDs and their experiences of them. METHODS: Healthcare Improvement Scotland undertook a health technology assessment (HTA) on the use of AWDs in chronic wounds. A focus group (n=8) and six telephone interviews were carried out. The data were analysed thematically. RESULTS: The participants were generally positive about AWDs. Some felt that access to AWDS was unjustifiably restricted because of costs. Participants reported wanting to try anything to heal their wound, or to control the symptoms. There was no one preferred AWD; what worked well for one person did not necessarily work for others. Patients experienced inconsistent access to AWDs, leading to frustration. CONCLUSION: Clinicians lack clear guidelines on the use of AWDs, which is resulting in inconsistency and increased burden for patients. Recommendations for the use of AWDs are given in the HTA, which is available on Healthcare Improvement Scotland's website.

Improving the user experience of patient versions of clinical guidelines: user testing of a Scottish Intercollegiate Guideline Network (SIGN) patient version.

BACKGROUND: Guideline producers are increasingly producing versions of guidelines for the public, and knowledge of what the public want from them is also increasing. The aim of this study was to user test a patient version of a SIGN clinical guideline that was designed based on preliminary work for the DECIDE project. SIGN is the leading national guideline producer in Scotland. METHODS: People with a diagnosis of glaucoma and non-professional carers were recruited from across Scotland. User testing was conducted using a think-aloud protocol method. Each session was conducted by one interviewer and one observer. All sessions were recorded and transcribed. The data was analysed, problems with the guideline were identified and resolved and key findings were themed using a user experience model. RESULTS: Thirteen user testing sessions with people with glaucoma and one with a carer were conducted. Key facilitators of desirability and usability identified include clear branding as a patient version and a clearly described purpose, audience and contents page. Other facilitators include a "friendly" tone which is achieved by the use of colour, quotes, icons, simple language and charts, and brief chunked text. The value and usefulness of the patient guideline was influenced by its ability to: inform the public, link information to actions, and empower people in their interaction with healthcare professionals. Participants were disappointed by the lack of information on treatment in the patient version, which was outside its scope. Information on the evidence based guideline production process and the involvement of appropriately skilled professionals was key to the credibility of the guideline. Lack of awareness of guidelines and guideline producing bodies, is a potentially serious threat to findability/accessibility. CONCLUSIONS: It is important for guideline producers to maximise the user experience of the public when they access patient versions of guidelines, particularly given the current low level of access and awareness. One size does not fit all and guideline producers need to strike a balance between keeping the patient version simple and providing sufficient information to facilitate shared decision making and empower the public. Guideline producers may find the results of this study useful in designing their own patient versions.

Factors predicting the outcome of psychotherapy for borderline personality disorder: a systematic review.

BACKGROUND: There is substantial variation between individuals with borderline personality disorder (BPD) in the degree of benefit gained from psychotherapy. Information on factors predicting the outcome of therapy for this group could facilitate identification of those at risk for poor outcome, and could enable helpful therapy processes to be identified. METHOD: A systematic search of PsycInfo, EMBASE, CINHAL and Medline identified research on factors predicting symptom change during therapy for patients with a BPD diagnosis. Non-English language papers and dissertations were included. RESULTS: Two consistent positive predictors of symptom change were identified: pre-treatment symptom severity and patient-rated therapeutic alliance. Contrary to theories predicting increasing immutability with age, there was no evidence that age predicted poorer outcome. CONCLUSION: More severely ill patients may have greater potential to achieve change during therapy, and should remain a focus for psychotherapy services. The therapeutic alliance is an important common factor predicting outcome in patients with BPD, even in highly disorder-specific treatments. Outcomes may be improved by further clinical and research focus on forming strong therapeutic alliances. The advancement of the field requires identification and testing of new predictors of outcome, especially those related to specific theories of therapeutic change in BPD.

Implications of long-term conditions for both mental and physical health: comparison of rheumatoid arthritis and schizophrenia.

PURPOSE: To investigate whether people with long term conditions, whatever their specific nature, need to be assessed and treated for the full range of mental, physical and social problems. Main question investigated: that rheumatoid arthritis and schizophrenia will be associated with significantly greater impairment across the subscores of the SF36 scale than in reference general population samples. Specific hypothesis tested: while rheumatoid arthritis and schizophrenia will impair both physical and mental functioning, when comparing the two groups there will be a greater difference between the physical component scores than there will be between the mental/emotional component scores of the short form health survey (SF-36). METHODS: Cross sectional comparison of SF-36 subscore profiles of cohorts of: (1) people with rheumatoid arthritis attending specialist Rheumatology outpatient clinics in five London hospitals (n = 446), and (2) people with schizophrenia treated by community psychiatric teams in four sites in Europe (n = 409). RESULTS: Both groups had greater impairments across the whole spectrum of mental and physical problems assessed by the SF-36 than age specific normative data for the general population. The results also support our hypothesis that, comparing the people with rheumatoid arthritis and schizophrenia, we did find that there is a greater discrepancy between the physical scales than there is between the mental/emotional scales of the SF-36. CONCLUSIONS: These findings show that whether the primary long-term condition is presenting as physical or as mental disorder, the practitioner should ensure that the full range of physical, mental and social problems is assessed and treated.