Do Patient- and Parent-reported Outcomes Measures for Children With Congenital Hand Differences Capture WHO-ICF Domains?

Adkinson, Joshua M.; Bickham, Rebecca S.; Chung, Kevin C.; Waljee, Jennifer F.

doi:10.1007/s11999-015-4505-5

Cited by 13 publications

(9 citation statements)

References 82 publications

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“…5 Similarly, implications of joint instability and motion on day-to-day functioning are not truly known, highlighting the need to use PROMs. Unfortunately, there is a lack of comprehensive and validated PROMs available for the CULA population assessing both functional and psychological outcomes, 23 and so we are reluctant to make recommendations. However, the Pediatric Outcomes Data Collection Instrument and Patient-Reported Outcomes Measurement Information System are being used successfully for continuous and longitudinal data collection within the Congenital Upper Limb Differences database.…”

Section: Recommendationsmentioning

confidence: 99%

Correction of Thumb Duplication: A Systematic Review of Surgical Techniques

Miller

Kaempfen

Moledina

et al. 2020

Journal of Hand and Microsurgery

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Surgical intervention for thumb duplication can be divided into three categories: simple excision of the accessory thumb, excision of the accessory thumb with reconstruction from available “spare parts,” and combining the two thumbs into one, as described by Bilhaut. This prospectively PROSPERO registered systematic review evaluates the overall, aesthetic and functional outcomes for the latter two options (reconstruction from spare parts vs. combining two thumbs into one), aiming to facilitate evidence-based decision making when addressing thumb duplication and direct future research. The review was performed in accordance with the Cochrane Handbook of Systematic Reviews and PRISMA statement. Embase, PubMed, Medline, and Cochrane databases were systematically searched. Studies offering comparisons of techniques were included. Risk of bias was assessed using the Risk of Bias In Non-randomized Studies—of Intervention tool. The quality of the evidence was assessed using the Grading of Recommendations, Assessment, Development, and Evaluation. Ten retrospective observational studies were included. Data did not consistently allow analysis by procedure type. Four studies reported similar overall outcomes between techniques, while two specifically reported poor overall outcomes for the Bilhaut procedure. Two studies reported comparatively worse aesthetic outcomes for the Bilhaut procedure with four studies reporting comparatively improved functional outcomes for this procedure. Overall, interpretation of outcomes was challenging with no patient-reported outcome measures used. The quality of the evidence was universally “very low” due to all studies being at risk of methodological bias. Based on the available evidence, surgical techniques for thumb duplication correction appear comparable regarding overall outcome. There is limited evidence suggesting reconstruction with spare parts offers superior aesthetic outcomes at the expense of stability. The level of evidence is III.

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Section: Recommendationsmentioning

confidence: 99%

Correction of Thumb Duplication: A Systematic Review of Surgical Techniques

Miller

Kaempfen

Moledina

et al. 2020

Journal of Hand and Microsurgery

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“…Despite an evident discordance between existing parent-proxy and child self-reports, few CHULD studies have sought the perspective of children themselves (Adkinson et al, 2015;Miller et al, 2020). Understanding the patient experience is integral to improving health outcomes, and paediatric patients should not be an exception (Adkinson et al, 2015;Thompson and Kent, 2001).…”

Section: Introductionmentioning

confidence: 99%

The psychosocial impact of congenital hand and upper limb differences on children: a qualitative study

McDougall

Kennedy

Coombs

et al. 2020

J Hand Surg Eur Vol

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This qualitative study explored the psychosocial concerns of children born with congenital hand and upper limb differences (CHULDs) from the point of view of these children and their parents. Qualitative, in-depth, semi-structured interviews were conducted face-to-face with eight parent–child dyads. Open format questions allowed spontaneous emergence of relevant themes, followed by guided questioning. Thematic analysis of audio-recorded and transcribed interviews found that children as young as 5 years old had unique and meaningful opinions about their CHULD, of which parents were sometimes unaware. Children reported that unsolicited questions from peers caused significant stress, and this increased around the time of surgery. All children used planned responses to peers as an effective coping mechanism. Children also identified positive aspects of their difference, including an increased sense of determination and an appreciation for being unique. Strategies that may improve psychosocial outcomes for children with CHULDs are discussed. Level of evidence: IV

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“…Although various aspects of HRQOL were included in PROMIS/Neuro‐QoL measures, discrepancies exist in thematic overlap between focus group domains and existing PRO measures. PROMIS/Neuro‐QoL have been used in different pediatric populations with chronic diseases [19‐26]. One of the difficulties when applying PROMIS/Neuro‐QoL to populations with chronic illnesses is that current PRO measures might be too generic to distinguish HRQOL differences between disease level as well as HRQOL changes during treatment.…”

Section: Discussionmentioning

confidence: 99%

“…Quality of Life in Neurological Disorders (Neuro‐QoL) is another federally funded initiative to create, in tandem with PROMIS, measures of HRQOL that are applicable across neurologic conditions. Neuro‐QoL, and PROMIS in particular, have been used widely in pediatric populations [19‐26] and are designed to sensitively assess self‐reported HRQOL. Although these measures have been used in several different pediatric populations, neither PROMIS nor Neuro‐QoL has been examined in NBPP.…”

Section: Introductionmentioning

confidence: 99%