‘Drawing a line in the sand’: Physician diagnostic uncertainty in paediatric chronic pain

Neville, Alexandra; Noel, Melanie; Clinch, Jacqui; Pincus, Tamar; Jordan, Abbie

doi:10.1002/ejp.1682

Cited by 25 publications

(18 citation statements)

References 38 publications

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“…Specific to pain professionals, several authors highlighted service disruptions [ 11 , 23 , 26 ] as a main point of concern; for example, the closure of physiotherapy and psychological services made chronic pain management more difficult, leading to the worsening of patients’ health conditions. Additionally, the fact that pain care was not being perceived as essential [ 29 , 30 ], the reduction in available staff through redeployment to pandemic-related services, and the extended closure of clinics limiting in-person or virtual care [ 26 ] has also been echoed among adult pain professionals [ 26 ]. This lack of access to pain care may have led to an increase in hospital admissions likely due to poorly controlled pain and/or deteriorating mental health.…”

Section: Discussionmentioning

confidence: 99%

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study

et al. 2022

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Chronic pain affects 1 in 5 youth, many of whom manage their pain using a biopsychosocial approach. The COVID-19 pandemic has impacted the way that healthcare is delivered. As part of a larger program of research, this study aimed to understand the impact of the pandemic on pediatric chronic pain care delivery including impact on patients’ outcomes, from the perspective of pediatric healthcare providers. A qualitative descriptive study design was used and 21 healthcare providers from various professional roles, clinical settings, and geographic locations across Canada were interviewed. Using a reflexive thematic analysis approach 3 themes were developed: (1) duality of pandemic impact on youth with chronic pain (i.e., how the pandemic influenced self-management while also exacerbating existing socioeconomic inequalities); (2) changes to the healthcare system and clinical practices (i.e., triaging and access to care); (3) shift to virtual care (i.e., role of institutions and hybrid models of care). These findings outline provider perspectives on the positive and negative impacts of the pandemic on youth with chronic pain and highlight the role of socioeconomic status and access to care in relation to chronic pain management during the pandemic in a high-income country with a publicly funded healthcare system.

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Section: Discussionmentioning

confidence: 99%

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study

et al. 2022

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“…A recent qualitative study investigating the diagnostic uncertainty of pediatricians evaluating chronic pain patients suggests that the decision to stop diagnostic testing on patients with unexplained chronic pain is ambiguous, complicated, and determined by many patient and physician factors ( 50 ). Further complicating this decision includes patient and family readiness to accept their chronic pain diagnosis, since 40% of parents of youth referred to pediatric chronic pain programs do not ( 51 ). Instead, these families are described as “relentlessly” searching for an alternative diagnosis they believe has been missed by their physician ( 51 ).…”

Section: Discussionmentioning

confidence: 99%

“…Further complicating this decision includes patient and family readiness to accept their chronic pain diagnosis, since 40% of parents of youth referred to pediatric chronic pain programs do not ( 51 ). Instead, these families are described as “relentlessly” searching for an alternative diagnosis they believe has been missed by their physician ( 51 ). This creates a unique circumstance for the referring provider who is attempting to juggle resource utilization and patient expectations, all the while ensuring secondary causes for pain have been ruled out.…”

Section: Discussionmentioning

confidence: 99%

Attaining expert consensus on diagnostic expectations of primary chronic pain diagnoses for patients referred to interdisciplinary pediatric chronic pain programs: A delphi study with pediatric chronic pain physicians and advanced practice nurses

et al. 2022

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ObjectivePediatric primary chronic pain disorders come with diagnostic uncertainty, which may obscure diagnostic expectations for referring providers and the decision to accept or re-direct patients into interdisciplinary pediatric chronic pain programs based on diagnostic completeness. We aimed to attain expert consensus on diagnostic expectations for patients who are referred to interdisciplinary pediatric chronic pain programs with six common primary chronic pain diagnoses.MethodWe conducted a modified Delphi study with pediatric chronic pain physicians, nurse practitioners and clinical nurse specialists to determine degree of importance on significant clinical indicators and diagnostic items relevant to each of the six primary chronic pain diagnoses. Items were identified through point of care databases and complimentary literature and were rated by participants on a 5-point Likert scale. Our consensus threshold was set at 70%.ResultsAmongst 22 experts across 14 interdisciplinary programs in round one and 16 experts across 12 interdisciplinary programs in round two, consensus was reached on 84% of diagnostic items, where the highest degree of agreement was with Complex Regional Pain Syndrome (CRPS), Type 1 (100%) and the lowest with chronic pelvic pain (67%).ConclusionThis study demonstrated a general agreement amongst pediatric chronic pain experts regarding diagnostic expectations of patients referred to interdisciplinary chronic pain programs with primary chronic pain diagnoses. Study findings may help to clarify referral expectations and the decision to accept or re-direct patients into such programs based on diagnostic completeness while reducing the occurrence of unnecessary diagnostic tests and subsequent delays in accessing specialized care.

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“…46,47 Adolescents often embark on a search for the 'right' diagnosis that continues for several years, despite physicians' attempts to cease further diagnostic testing. 48 A key question for future research is to what extent social media, which requires labels inherently in its structure, is fuelling young people's search for a diagnosis with chronic pain.…”

Section: Discussionmentioning

confidence: 99%

Trusting in the online ‘community’: An interview study exploring internet use in young people with chronic pain

Hurley-Wallace

Kirby

Bishop

2021

British Journal of Pain

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Background Chronic pain in young people is prevalent in the UK. Young people are digital natives, yet there has not been any online intervention developed in a UK context to help them manage chronic pain. Key to understanding the context in which young people engage with online interventions is better understanding their internet use for chronic pain management. The overarching aim of this study was to explore young peoples’ experiences of searching for information about chronic pain using the internet. This included experiences of using search engines (e.g. Google), health information websites (e.g. the National Health Service [NHS] website) and social media (e.g. Facebook and Instagram). Methods Semi-structured interviews were conducted with young people aged 16–24-years ( n = 24), online, via Microsoft (MS) Teams. The study was advertised online and via patient partner charities. Interview data was analysed using reflexive thematic analysis. Results Participants presented with a variety of chronic pain conditions, including joint hypermobility syndrome ( n = 6), chronic headache and/or migraine ( n = 4) and fibromyalgia ( n = 3). Four themes were generated: ‘Trustworthy information, or experiences?’, ‘Diagnostic labels in a digital world’, ‘The online chronic pain community’ and ‘A mind and body approach to self-management’. Young people trust advice from others in their online community and having a diagnostic label help them find relevant pain management strategies and support networks online. Conclusions This study is the first qualitative exploration of internet use in UK-based young people with chronic pain. Findings highlight the importance of considering internet use when developing new online interventions for young people with pain and that internet use, particularly social media use, is an important psychosocial consideration in pain management. Young people should be encouraged to verify practical pain management techniques found online with their doctor and be empowered in the safe use of appropriate psychology-based self-management resources.

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‘Drawing a line in the sand’: Physician diagnostic uncertainty in paediatric chronic pain

Cited by 25 publications

References 38 publications

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study

Attaining expert consensus on diagnostic expectations of primary chronic pain diagnoses for patients referred to interdisciplinary pediatric chronic pain programs: A delphi study with pediatric chronic pain physicians and advanced practice nurses

Trusting in the online ‘community’: An interview study exploring internet use in young people with chronic pain

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