• Development of a patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: using qualitative interviews to inform design and content

      Patchick, E.; Horne, Maria; Vail, A.; Bowen, A. (2015-12)
      Background Improving cognition is service users' top research priority for life after stroke, and future research should include outcomes that they deem important. Patient perspectives on outcomes are collected using patient-reported outcome measures (PROMs). There is currently no patient-centred PROM specific for cognitive rehabilitation trials. Objective Inform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stroke cognitive problems. Design Qualitative semi-structured interviews in participants' homes. Participants Purposive sample of 16 cognitively impaired stroke survivors at least six months post-stroke. Methods Interviews used a schedule and communication aids developed through patient consultation. Interviews were transcribed verbatim with non-verbal communication recorded using field notes. Data were analysed using a framework approach to find commonalities to shape the focus and content of an outcome measure. Results Participants identified important impacts of their ‘invisible’ cognitive problems, outside of other stroke-related impairments. Cognitive problems exacerbated emotional issues and vice versa. Changes in self-identity and social participation were prominent. Impact was not spoken about in terms of frequency but rather in terms of the negative affect associated with problems; terms like ‘bothered’ and ‘frustration’ were often used. Conclusions The results support the development of a PROM specifically designed to address the impact of cognitive problems. It should: include items addressing a comprehensive range of cognitive skills; ask questions about mood, self-identity and social participation; use accessible wording that respondents understand and endorse; measure impact rather than frequency; and explore perceived impact on carers.
    • Patient-directed therapy during in-patient stroke rehabilitation: stroke survivors' views of feasibility and acceptability

      Horne, Maria; Thomas, N.; McCabe, C.; Selles, R.; Vail, A.; Tyrrell, P.J.; Tyson, S. (2015)
      Patient-led therapy, in which patients work outside therapy sessions without direct supervision, is a possible way to increase the amount of therapy stroke patients' receive without increasing staff demands. Here, we report patients' views of patient-led mirror therapy and lower limb exercises. 94 stroke survivors with upper and lower limb limitations at least 1-week post-stroke undertook 4 weeks of daily patient-led mirror therapy or lower limb exercise, then completed questionnaires regarding their experience and satisfaction. A convenience random sample of 20 participants also completed a semi-structured telephone interview to consider their experience in more detail and to capture their longer term impressions. Participants were generally positive about patient-led therapy. About 71% found it useful; 68% enjoyed it; 59% felt it "worked" and 88% would recommend it to other patients. Exercise was viewed more positively than the mirror therapy. Difficulties included arranging the equipment and their position, particularly for more severe strokes, loss of motivation and concerns about working unsupervised. Patient-led mirror therapy and lower limb exercises during in-patient rehabilitation is generally feasible and acceptable to patients but "light touch" supervision to deal with any problems, and strategies to maintain focus and motivation are needed. Implications for Rehabilitation Most stroke patients receive insufficient therapy to maximize recovery during rehabilitation. As increases in staffing are unlikely there is an imperative to find ways for patients to increase the amount of exercise and practice of functional tasks they undertake without increasing demands on staff. Patient-led therapy (also known as patient-directed therapy or independent practice), in which patients undertake exercises or functional tasks practice prescribed by a professional outside formal therapy sessions is one way of achieving this. It is widely used in community-based rehabilitation but is uncommon in hospital-based stroke care. We explored the feasibility and acceptability of two types of patient-led therapy during hospital-based stroke care; mirror therapy for the upper limb and exercises (without a mirror) for the lower limb. Here, we report patients' experiences of undertaking patient-led therapy. Patient-led mirror therapy and lower limb exercises during in-patient stroke rehabilitation is generally feasible and acceptable to patients but "light touch" supervision to deal with any problems, and strategies to maintain focus and motivation are needed.
    • Staff's views on delivering patient-led therapy during inpatient stroke rehabilitation: a focus group study with lessons for trial fidelity

      Horne, Maria; Thomas, N.; Vail, A.; Selles, R.; McCabe, C.; Tyson, S. (2015)
      Fidelity to the treatment protocol is key to successful trials but often problematic. This article reports the staff's views on delivering a complex rehabilitation intervention: patient-led therapy during inpatient stroke care. An exploratory qualitative study using focus groups with staff involved in a multicenter (n = 12) feasibility trial of patient-led therapy (the MAESTRO trial) was undertaken as part of the evaluation process. Purposive sampling ensured that participants represented all recruiting sites, relevant professions and levels of seniority. Data analysis used a Framework Approach. Five focus groups were held involving 30 participants. Five main themes emerged: the effect of the interventions, practical problems, patient-related factors, professional dilemmas, and skills. Staff felt the main effect of the therapies was on patients' autonomy and occupation; the main practical problems were the patients' difficulties in achieving the correct position and a lack of space. Staff clearly identified characteristics that made patient-led therapy unsuitable for some patients. Most staff experienced dilemmas over how to prioritize the trial interventions compared to their usual therapy and other clinical demands. Staff also lacked confidence about how to deliver the interventions, particularly when adapting the interventions to individual needs. For each barrier to implementation, possible solutions were identified. Of these, involving other people and establishing a routine were the most common. Delivering rehabilitation interventions within a trial is complex. Staff require time and support to develop the skills, strategies and confidence to identify suitable patients, deliver new treatments, adapt the new treatments to individuals' needs and balance the demands of delivering the trial intervention according to the treatment protocol with other clinical and professional priorities. TRIAL REGISTRATION: ISRCTN: ISRCTN29533052 . October 2011.
    • Sun exposure behaviour, seasonal vitamin D deficiency, and relationship to bone health in adolescents

      Farrar, M.D.; Mughal, M.Z.; Adams, Jenny E.; Wilkinson, J.; Berry, J.L.; Edwards, Lisa; Kift, R.; Marjanovic, E.; Vail, A.; Webb, A.R.; et al. (2016-08-01)
      Context: Vitamin D is essential for bone health in adolescence, where there is rapid bone mineral content accrual. As cutaneous sun-exposure provides vitamin D, there is no recommended oral intake for UK adolescents. Objective: Assess seasonal vitamin D status and its contributors in white Caucasian adolescents, and examine bone health in those found deficient. Design: Prospective cohort study. Setting: Six schools in Greater Manchester, UK. Participants: 131 adolescents, 12–15 years. Intervention(s): Seasonal assessment of circulating 25-hydroxyvitamin D (25OHD), personal sunexposure and dietary vitamin D. Adolescents deficient (25OHD <10 ng/mL/25 nmol/L) in ≥one season underwent dual-energy X-ray absorptiometry (lumbar spine, femoral neck), with bone mineral apparent density (BMAD) correction for size, and peripheral quantitative computed tomography (distal radius) for volumetric (v)BMD. Main Outcome Measure: Serum 25OHD; BMD. Results: Mean 25OHD was highest in September: 24.1 (SD 6.9) ng/mL and lowest in January: 15.5 (5.9) ng/mL. Over the year, 16% were deficient in ≥one season and 79% insufficient (25OHD <20 ng/mL/50 nmol/L) including 28% in September. Dietary vitamin D was low year-round while personal sun-exposure was seasonal and predominantly across the school week. Holidays accounted for 17% variation in peak 25OHD (p<0.001). Nineteen adolescents underwent bone assessment, which showed low femoral neck BMAD versus matched reference data (p=0.0002), 3 with Z≤ -2.0 distal radius trabecular vBMD. Conclusions: Sun-exposure levels failed to provide adequate vitamin D, ~one-quarter adolescents insufficient even at summer-peak. Seasonal vitamin D deficiency was prevalent and those affected had low BMD. Recommendations on vitamin D acquisition are indicated in this age-group.