Pediatric Restless Legs Syndrome

Picchietti, Daniel L.; Arbuckle, Robert; Abetz, Linda; Durmer, Jeffrey S.; Ivanenko, Anna; Owens, Judith; Croenlein, Jens; Allen, Richard P.; Walters, Arthur S.

doi:10.1177/0883073811405852

Cited by 54 publications

(14 citation statements)

References 49 publications

(76 reference statements)

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“…The free-drawing task asked children to draw what it feels like to have a cold and describe their drawing aloud. This method often helps nervous children to relax and draws out comments that might not be elicited from formal questioning [11,16]. The 'circle parts of your body' task involved children circling areas of an outline of a human child's upper body that felt different to them while experiencing the cold and describing how each felt.…”

Section: Interview Proceduresmentioning

confidence: 99%

Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold

Halstead

Arbuckle

Marshall

et al. 2019

Patient

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Background and objective No pediatric patient-reported outcome instruments specific to the common cold are found in the literature. This study involved development and content validity testing of patient-reported outcome items (questions and response options) assessing cold symptoms in children aged 6-11 years. Methods Draft patient-reported outcome instructions, items, response scales, and recall periods were developed based on the literature and existing measures. Qualitative interviews were conducted with children (n = 39) who were currently (n = 31) or had recently (n = 8) experienced a cold and ten parents of a subset of children aged 6-8 years. The interviews were conducted over two rounds and included open-ended concept elicitation questioning, a free-drawing task, a card sorting task, and a task involving circling parts of the body, followed by cognitive debriefing of draft items. Thematic analysis of verbatim transcripts was performed to analyze the qualitative data. The findings were used to support revisions to the draft patient-reported outcome. Results Ten symptom concepts were reported by the children during concept elicitation. The creative tasks helped the children to describe their symptoms, generally using consistent language to do so, irrespective of age. Nineteen patient-reported outcome items were developed and subject to cognitive debriefing. Debriefing with both children and parents informed several small revisions and provided evidence that the majority of children found most patient-reported outcome items easy to understand, and that the items were mainly interpreted consistently and as intended. Conclusions This in-depth qualitative study has supported identification of relevant symptom concepts and the development and refinement of patient-reported outcome items to assess those concepts. The findings support the content validity of the items and suggest that they can be used with confidence in children aged 9 years and older. For children aged 6-8 years, it is recommended the items are administered with initial adult supervision to explain the more difficult concepts or through parent/interviewer administration.

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Section: Interview Proceduresmentioning

confidence: 99%

Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold

Halstead

Arbuckle

Marshall

et al. 2019

Patient

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“…45% of children use the terms pain and hurts or hurting which makes growing pains a common misdiagnosis in pediatric RLS (Picchietti et al, 2013). And children always use their own words like “need to move, want to move and got to kick (Picchietti et al, 2011)” to describe “urge”. ADHD is also a very common comorbidity in pediatric RLS.…”

Section: Clinical Presentations and Diagnostic Criteriamentioning

confidence: 99%

“…Considering that children might not understand the term “urge”, simple straightforward prompts should be asked, like “Do your legs bother you?” or “Do your legs bother you at night?” And common descriptions used by children about RLS sensations are “need to move, want to move and got to kick (Picchietti et al, 2011)”. RLS mimics like ADHD, sore leg muscles, growing pains and dermatitis should be carefully considered when diagnosing pediatric RLS (Picchietti et al, 2013).…”

Section: Clinical Presentations and Diagnostic Criteriamentioning

confidence: 99%

Restless Legs Syndrome: From Pathophysiology to Clinical Diagnosis and Management

Guo

Huang

Jiang

et al. 2017

Front. Aging Neurosci.

125

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Restless legs syndrome (RLS), a common neurological sensorimotor disorder in western countries, has gained more and more attention in Asian countries. The prevalence of RLS is higher in older people and females. RLS is most commonly related to iron deficiency, pregnancy and uremia. The RLS symptoms show a significant circadian rhythm and a close relationship to periodic limb movements (PLMs) in clinical observations, while the pathophysiological pathways are still unknown. The diagnostic criteria have been revised in 2012 to improve the validity of RLS diagnosis. Recent studies have suggested an important role of iron decrease of brain in RLS pathophysiology. Dopaminergic (DA) system dysfunction in A11 cell groups has been recognized long ago from clinical treatment and autopsy. Nowadays, it is believed that iron dysfunction can affect DA system from different pathways and opioids have a protective effect on DA system. Several susceptible single nucleotide polymorphisms such as BTBD9 and MEIS1, which are thought to be involved in embryonic neuronal development, have been reported to be associated with RLS. Several pharmacological and non-pharmacological treatment are discussed in this review. First-line treatments of RLS include DA agents and α2δ agonists. Augmentation is very common in long-term treatment of RLS which makes prevention and management of augmentation very important for RLS patients. A combination of different types of medication is effective in preventing and treating augmentation. The knowledge on RLS is still limited, the pathophysiology and better management of RLS remain to be discovered.

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“…Asking the patient to do ‘homework’ prior to the interview, in the form of putting together a collage or drawing that describes their experience of their condition, can immediately open the interview with useful and very pertinent and emotive information. Drawings, for example, may be particularly helpful for facilitating children or adolescents’ interviews [31]. …”

Section: Reviewmentioning

confidence: 99%

“…Care must be taken to use age appropriate language throughout the interview. As their attention may not span beyond 30 minutes, using play or drawings with children often facilitate expression and can break up the interview with fun activities that still provide useful information for the project objectives [31,47]. …”

Section: Reviewmentioning

confidence: 99%

Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience

Brédart

Marrel

Abetz-Webb³

et al. 2014

Health Qual Life Outcomes

147

137

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Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this end, the collection of data is performed through qualitative interviews that allow for the elicitation of in-depth spontaneous reports of the patients’ experiences with their condition and/or its treatment. This paper provides a review of qualitative research applied to PRO measure development. A clear definition of what is a qualitative research interview is given as well as information about the form and content of qualitative interviews required for developing PRO measures. Particular attention is paid to the description of interviewing approaches (e.g., semi-structured and in-depth interviews, individual vs. focus group interviews). Information about how to get prepared for a qualitative interview is provided with the description of how to develop discussion guides for exploratory or cognitive interviews. Interviewing patients to obtain knowledge regarding their illness experience requires interpersonal and communication skills to facilitate patients’ expression. Those skills are described in details, as well as the skills needed to facilitate focus groups and to interview children, adolescents and the elderly. Special attention is also given to quality assurance and interview training. The paper ends on ethical considerations since interviewing for the development of PROs is performed in a context of illness and vulnerability. Therefore, it is all the more important that, in addition to soliciting informed consent, respectful interactions be ensured throughout the interview process.

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Pediatric Restless Legs Syndrome

Cited by 54 publications

References 49 publications

Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold

Development and Content Validity Testing of Patient-Reported Outcome Items for Children to Self-Assess Symptoms of the Common Cold

Restless Legs Syndrome: From Pathophysiology to Clinical Diagnosis and Management

Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience

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