Participant-Generated Timelines: A Participatory Tool to Explore Young People With Chronic Pain and Parents' Narratives of Their Healthcare Experiences.

Visual methods are becoming more evident in health research. Timeline drawings have been used as a participatory tool alongside interviews in life course research. In this article, we describe how a method involving timeline generation can explore patient experiences along a treatment continuum. Grounded in previously published evidence and using specific examples from two studies exploring the experiences of young people treated for chronic pain, we outline the key components of this method. Moreover, we highlight the flexibility of its application and the importance of using a person-centered approach in tailoring the application pragmatically to study population-specific needs and characteristics, while answering the research question. We also reflect on how the dynamic visual display of the timeline and participants' explanations add perspective and understanding to complex and multidimensional human experiences associated with healthcare treatment. Furthermore, we outline how this method can help capture changes in the meaning and sense-making of these experiences over time, all the while fostering empowerment in study participants. Finally, the key considerations of using the method are outlined. It is our aim that this article provides the details required to inspire others to consider this novel method as a means of capturing the healthcare experiences of young people with other chronic conditions, an important first step in fostering the changes required to improve the quality of healthcare services and research.

Assessing a child or adolescent with low back pain is different to assessing an adult with low back pain.

In contrast to an assessment of an adult presenting with low back pain (LBP), clinicians should utilise different approaches when assessing children and adolescents presenting with LBP. Children are not 'little adults'. There are some unique pathologies that only occur in this age group: (i) serious pathologies include infection, fracture, child abuse and malignancy; (ii) growth-related pathologies include scoliosis, Scheuermann's disease, pars fracture and spondylolysis; and (iii) rheumatological conditions include juvenile idiopathic arthritis and ankylosing spondylitis. With changes in each child occurring physically, emotionally and socially, a clinician's knowledge of typical developmental milestones is essential to identify regression or delayed development. When listening to a child discuss their pain experience, a flexible structure should be implemented that gives the capacity to actively listen to a child's narrative (and that of their guardian) and to conduct an effective physical examination. This viewpoint also summarises the relationship between potential clinical diagnoses and key elements of a physical examination. Deciding on the type and timing of paediatric-specific physical examination tests requires unique child-centred considerations. Paediatric-specific outcome measures should be used but implemented pragmatically, with consideration regarding the time, complexity and pathology suspected. Systematic and rigorous approaches to both treatment planning and re-assessment are then proposed for the assessment of children and adolescents presenting with LBP.

Validation of a portable nitric oxide analyzer for screening in primary ciliary dyskinesias.

BACKGROUND: Nasal nitric oxide (nNO) levels are very low in primary ciliary dyskinesia (PCD) and it is used as a screening test. METHODS: We assessed the reliability and usability of a hand-held analyser in comparison to a stationary nitric oxide (NO) analyser in 50 participants (15 healthy, 13 PCD, 22 other respiratory diseases; age 6-79 years). Nasal NO was measured using a stationary NO analyser during a breath-holding maneuver, and using a hand-held analyser during tidal breathing, sampling at 2 ml/sec or 5 ml/sec. The three methods were compared for their specificity and sensitivity as a screen for PCD, their success rate in different age groups, within subject repeatability and acceptability. Correlation between methods was assessed. RESULTS: Valid nNO measurements were obtained in 94% of participants using the stationary analyser, 96% using the hand-held analyser at 5 ml/sec and 76% at 2 ml/sec. The hand-held device at 5 ml/sec had excellent sensitivity and specificity as a screening test for PCD during tidal breathing (cut-off of 30 nL/min,100% sensitivity, >95% specificity). The cut-off using the stationary analyser during breath-hold was 38 nL/min (100% sensitivity, 95% specificity). The stationary and hand-held analyser (5 ml/sec) showed reasonable within-subject repeatability(% coefficient of variation = 15). CONCLUSION: The hand-held NO analyser provides a promising screening tool for PCD.

Meaningful Clinical Outcomes for Young People and Parents When Treated for Chronic Musculoskeletal Pain in the UK: Q Set Development.

Previous studies have established a core outcome set for pediatric chronic pain clinical trials. The aim of this research was to establish which outcomes young people and parents considered important to measure during treatment for chronic musculoskeletal pain. To the best of our knowledge, this is the first study to explore which outcomes could be used to tailor interventions within a clinical setting. Twenty-one young people (aged 11-18 years) and 21 parents were recruited from 2 UK hospital sites and took part in semi-structured interviews that incorporated drawing a timeline of their treatment. They identified positive and negative outcomes showing the perceived effectiveness of treatment. Informed by Q methodology, the words and phases of young people and parents were developed into 101 statements that were mapped onto the core outcome set and represented wide-ranging opinions regarding the outcomes they considered important (Q set). This approach helped identify additional statements related to "parent and family functioning" not routinely considered. Outcomes related to the treatment experience and adverse effects were highlighted as important, yet are not routinely prioritized in clinical research. Parents prioritized outcomes related to the treatment experience, whereas young people prioritized their overall well-being. Over the course of treatment, outcome focus changed, with some outcomes only deemed relevant at a specific time point. Overall, the research highlighted the need for clinical guidance on which outcome domains to measure during the treatment course to gauge treatment effectiveness and optimally tailor interventions. PERSPECTIVE: This study established the range of outcomes that were important to young people and their parents during treatment for chronic musculoskeletal pain. The findings show how young people and parents have different outcome preferences and how their outcome focus changes during the treatment course.

"You just want someone to help": Outcomes that matter to parents when their child is treated for chronic pain.

In children's chronic pain services, healthcare decisions involve a three-way interaction between the child, their parent or guardian, and the health professional. Parents have unique needs, and it is unknown how they visualize their child's recovery and which outcomes they perceive to be an indication of their child's progress. This qualitative study explored the outcomes parents considered important, when their child was undergoing treatment for chronic pain. A purposive sample of twenty-one parents of children receiving treatment for chronic musculoskeletal pain, completed a one-off semi-structured interview that involved drawing a timeline of their child's treatment. The interview and timeline content were analyzed using thematic analysis. Four themes are evident at different points of the child's treatment course. The "perfect storm" that described their child's pain starting, "fighting in the dark" was a stage when parents focused on finding a service or health professional that could solve their child's pain. The third stage, "drawing a line under it," changed the outcomes parents considered important, parents changed how they approached their child's pain and worked alongside professionals, focusing on their child's happiness and engagement with life. They watched their child make positive change and moved toward the final theme "free." The outcomes parents considered important changed over their child's treatment course. The shift described by parents during treatment appeared pivotal to the recovery of young people, demonstrating the importance of the role of parents within chronic pain treatment.

Exploring the Outcomes That Matter Most to Young People Treated for Chronic Pain: A Qualitative Study.

Global and national policies state that all children and young people should be part of decision making and that outcomes that matter to them should take priority, yet patient-centred outcomes have been identified as a gap in the paediatric chronic pain literature. This study gave youths experiencing chronic pain a platform to have their views heard. Using novel methods, twenty-one young people, aged 11 to 18 years old, completed a semi-structured interview in which they constructed a timeline drawing to symbolise their treatment. They identified when aspects of their life changed (outcomes) and described the importance of these changes. Thematic analysis identified four themes that emerged at different stages of the treatment: "perfect storm"; "turning points"; "disconnect"; and; "free". "Turning points" were points in time when the narrative of the young person took a turn in a different direction. At these points, the outcomes important to them also changed. Youths initially prioritised outcomes related to pain, then during treatment the focus became their emotional functioning, with role functioning and "going out" becoming the focus at the end. The stage of treatment as perceived by the young person impacted which outcomes mattered most.