Internet and smartphone-based ecological momentary assessment and personalized advice (PROfeel) in adolescents with chronic conditions: A feasibility study

Vlist, Merel M. Nap-van der; Dalmeijer, Geertje W.; Grootenhuis, Martha A.; Ent, Cornelis K. van der; Grotel, Martine van; Swart, Joost F.; Montfrans, Joris M. van; Putte, Elise M. van de; Nijhof, Sanne L.

doi:10.1016/j.invent.2021.100395

Cited by 16 publications

(20 citation statements)

References 51 publications

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“…The RCT starts with a four-week ESM assessment (see Table 1 for timeline). ESM is an innovative, validated, structured diary technique for longitudinal measurements of uctuating states, that captures life as it is lived on the spot (22,23,28). Multiple ESM-applications are available for smartphones.…”

Section: Intervention Description {11a}mentioning

confidence: 99%

“…In this study, we use the Ethica application (www.ethicadata.com) in which participants complete ESM surveys (i.e., diaries) approximately 5 times per day. In a rst step, ESM data are used by a statistician to compute an individual descriptive report and an individual dynamic report with fatigue-perpetuating dynamic networks, identifying the contemporaneous and time-lag relations between uctuations in fatigue and behaviour, sleep, social context, cognitions and feelings (23). In a next step, the investigator uses the descriptive and dynamic reports to produce a reduced PROfeel report.…”

Section: Intervention Description {11a}mentioning

confidence: 99%

“…The effectiveness of patient-tailored PROfeel lifestyle advices in reducing 'fatigue severity' and improving 'quality of life' and 'self-e cacy' will be compared with generic dietary advices based on the Netherlands Nutrition Centre (NNC) (www.voedingscentrum.nl). The PROfeel method has previously been found feasible and useful by fatigued adolescents (23). The next step is to test whether the patient-tailored PROfeel lifestyle advices are also effective in terms of reducing 'fatigue severity'.…”

Section: Interventions Explanation For the Choice Of Comparators {6b}mentioning

confidence: 99%

“…Completing the personalized survey takes approximately one minute. The ESM content was developed in an interdisciplinary team of researchers and clinicians, and was previously tested in a feasibility study (23).…”

Section: Profeel: Esm Assessmentmentioning

confidence: 99%

“…Two example gures are shown in the appendix (Figures 1 and 2). Patients have considered the visual presentation of their symptoms a strong feature of PROfeel (23).…”

Section: Profeel: Feedback Report and Shared Decision-makingmentioning

confidence: 99%

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Identifying disrupted biological factors and patient-tailored interventions for chronic fatigue in adolescents and young adults with Q-Fever Fatigue Syndrome, Chronic Fatigue Syndrome and Juvenile Idiopathic Arthritis (QFS-study): study protocol for a randomized controlled trial with single-subject experimental case series design

Vroegindeweij

Swart

Eijkelkamp

et al. 2022

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Background Chronic fatigue with a debilitating effect on daily life is a frequently reported symptom among adolescents and young adults with a history of Q-fever infection (QFS). Persisting fatigue after infection may have a biological origin with psychological and social factors contributing to the disease phenotype. This is consistent with the biopsychosocial framework, which considers fatigue to be the result of a complex interaction between biological, psychological and social factors. In line, similar manifestations of chronic fatigue are observed in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Juvenile Idiopathic Arthritis (JIA). Cognitive behavioural therapy is often recommended as treatment for chronic fatigue, considering its’ effectiveness on the group-level. However, not everybody benefits on the individual level. More treatment success at the individual level might be achieved with patient-tailored treatments that incorporate the biopsychosocial framework. Methods In addition to biological assessments of blood, stool, saliva, and hair, the QFS-study consists of a randomized controlled trial (RCT) in which a single-subject experimental case series (N = 1) design will be implemented using Experience Sampling Methodology in fatigued adolescents and young adults with QFS, CFS/ME and JIA (aged 12–29). With the RCT design, the effectiveness of patient-tailored PROfeel lifestyle advices will be compared against generic dietary advices in reducing fatigue severity at the group-level. Pre-post analyses will be conducted to determine relevance of intervention order. By means of the N = 1 design, effectiveness of both advices will be measured at the individual level. Discussion The QFS-study is a comprehensive study exploring disrupted biological factors and patient-tailored lifestyle advices as intervention in adolescent and young adults with QFS and similar manifestations of chronic fatigue. Practical or operational issues are expected during the study, but can be overcome through innovative study design, statistical approaches, and recruitment strategies. Ultimately, the study aims to contribute to biological research and (personalized) treatment in QFS and similar manifestations of chronic fatigue. Trial registration: Trial NL8789 (www.trialregister.nl). Registered July 21, 2020.

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Section: Intervention Description {11a}mentioning

confidence: 99%

Section: Intervention Description {11a}mentioning

confidence: 99%

Section: Interventions Explanation For the Choice Of Comparators {6b}mentioning

confidence: 99%

Section: Profeel: Esm Assessmentmentioning

confidence: 99%

“…Two example gures are shown in the appendix (Figures 1 and 2). Patients have considered the visual presentation of their symptoms a strong feature of PROfeel (23).…”

Section: Profeel: Feedback Report and Shared Decision-makingmentioning

confidence: 99%

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Identifying disrupted biological factors and patient-tailored interventions for chronic fatigue in adolescents and young adults with Q-Fever Fatigue Syndrome, Chronic Fatigue Syndrome and Juvenile Idiopathic Arthritis (QFS-study): study protocol for a randomized controlled trial with single-subject experimental case series design

Vroegindeweij

Swart

Eijkelkamp

et al. 2022

Preprint

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The PROactive cohort study: rationale, design, and study procedures

et al. 2022

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Children with a chronic condition face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. The PROactive cohort study identifies children with a chronic disease at high risk of debilitating fatigue, decreased daily life participation and psychosocial problems, as well as children who are resilient and thrive despite the challenges of growing up with a chronic condition. Both groups will teach us how we can best support children, adolescents and parents to adapt to and manage a disease, as well as tailor interventions to their specific needs.This cohort follows a continuous longitudinal design. It is based at the Wilhelmina Children’s Hospital (WKZ) in the Netherlands and has been running since December 2016. Children with a chronic condition (e.g. cystic fibrosis, juvenile idiopathic arthritis, chronic kidney disease, or congenital heart disease) as well children with medically unexplained fatigue or pain in a broad age range (2–18 years) are included, as well as their parent(s). Data are collected from parents (of children between 2 and 18 years) and children (8–18 years), as well as data from their electronic health record (EHR). Primary outcome measures are fatigue, daily life participation, and psychosocial well-being, all assessed via patient- and proxy-reported outcome measures. Generic biological/lifestyle, psychological, and social factors were assessed using clinical assessment tools and questionnaires. In the PROactive cohort study the research assessment is an integrated part of clinical care. Children are included when they visit the outpatient clinic and are followed up annually.

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Special issue on digital health interventions in chronic medical conditions: Editorial

Baumeister

Ebert

Snoek

2022

Internet Interventions

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Internet and smartphone-based ecological momentary assessment and personalized advice (PROfeel) in adolescents with chronic conditions: A feasibility study

Cited by 16 publications

References 51 publications

The PROactive cohort study: rationale, design, and study procedures

Special issue on digital health interventions in chronic medical conditions: Editorial

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