Patient and public involvement in mobile health-based research for hay fever: a qualitative study of patient and public involvement implementation process

Fujio, Kenta; Inomata, Takenori; Fujisawa, Kumiko; Sung, Jaemyoung; Nakamura, Masahiro; Iwagami, Masao; Muto, Kaori; Ebihara, Nobuyuki; Okano, Mitsuhiro; Akasaki, Yasutsugu; Okumura, Yuichi; Ide, Takuma; Nojiri, Shuko; Nagao, Masashi; Fujimoto, Keiichi; Hirosawa, Kunihiko; Murakami, Akira

doi:10.1186/s40900-022-00382-6

Cited by 8 publications

(8 citation statements)

References 51 publications

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“… 26 The NNSS consists of four items pertaining to itchy eyes, watery eyes, eye redness, and itchy ears and mouth. 26 Each item of the NSS and NNSS is scored on a 4‐point scale as follows: 0 = no symptoms, 1 = mild symptoms, 2 = moderate symptoms, and 3 = severe symptoms. 15 The TSS (0–27) was derived from the sum of NSS (0–15) and NNSS (0–12).…”

Section: Methodsmentioning

confidence: 99%

“…The NSS consists of five items pertaining to rhinorrhea, nasal congestion, nasal itching, sneezing, and interference with daily life 26 . The NNSS consists of four items pertaining to itchy eyes, watery eyes, eye redness, and itchy ears and mouth 26 . Each item of the NSS and NNSS is scored on a 4‐point scale as follows: 0 = no symptoms, 1 = mild symptoms, 2 = moderate symptoms, and 3 = severe symptoms 15 .…”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

“… 4 , 12 , 20 , 26 AllerSearch is equipped with a function to assess users' hay‐fever symptoms through collecting ePROs (electronic PROs), including the NSS and NNSS. 4 , 12 , 20 , 26 mHealth, to date, has shown great promise in monitoring daily symptoms and treatment effectiveness with minimal intrusion. 27 , 28 , 29 , 30 , 31 , 32 , 33 Utilizing mHealth and a PRO with a widely agreed‐upon MCID value, it may be possible to accurately track meaningful changes in patients' symptoms and provide tailored treatments that are effective for individuals.…”

Section: Introductionmentioning

confidence: 99%

“…Our previous studies have elucidated numerous aggravating factors and stratified the symptoms of hay fever using a mobile health (mHealth) smartphone app for hay‐fever research—AllerSearch—released in February 2018 4,12,20,26 . AllerSearch is equipped with a function to assess users' hay‐fever symptoms through collecting ePROs (electronic PROs), including the NSS and NNSS 4,12,20,26 . mHealth, to date, has shown great promise in monitoring daily symptoms and treatment effectiveness with minimal intrusion 27–33 .…”

Section: Introductionmentioning

confidence: 99%

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The minimal clinically important difference of app‐based electronic patient‐reported outcomes for hay fever

Nagino

Sung

Midorikawa‐Inomata

et al. 2023

Clinical & Translational All

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Background Hay fever is a common allergic disease, with an estimated worldwide prevalence of 14.4% and a variety of symptoms. This study assessed the minimal clinically important difference (MCID) of nasal symptom score (NSS), non‐nasal symptom score (NNSS), and total symptoms score (TSS) for app‐based hay‐fever monitoring. Methods MCIDs were calculated based on the data from a previous large‐scale, crowdsourced, cross‐sectional study using AllerSearch, an in‐house smartphone application. MCIDs were determined with anchor‐based and distribution‐based methods. The face scale score of the Japanese Allergic Conjunctival Disease Standard Quality of Life Questionnaire Domain III and the daily stress level due to hay fever were used as anchors for determining MCIDs. The MCID estimates were summarized as MCID ranges. Results A total of 7590 participants were included in the analysis (mean age: 35.3 years, 57.1% women). The anchor‐based method produced a range of MCID values (median, interquartile range) for NSS (2.0, 1.5–2.1), NNSS (1.0, 0.9–1.2), and TSS (2.9, 2.4–3.3). The distribution‐based method produced two MCIDs (based on half a standard deviation, based on a standard error of measurement) for NSS (2.0, 1.8), NNSS (1.3, 1.2), and TSS (3.0, 2.3). The final suggested MCID ranges for NSS, NNSS, and TSS were 1.8–2.1, 1.2–1.3, and 2.4–3.3, respectively. Conclusions MCID ranges for app‐based hay‐fever symptom assessment were obtained from the data collected through a smartphone application, AllerSearch. These estimates may be useful for monitoring the subjective symptoms of Japanese patients with hay fever through mobile platforms.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

The minimal clinically important difference of app‐based electronic patient‐reported outcomes for hay fever

Nagino

Sung

Midorikawa‐Inomata

et al. 2023

Clinical & Translational All

Self Cite

View full text Add to dashboard Cite

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Individual multidisciplinary clinical phenotypes of nasal and ocular symptoms in hay fever: Crowdsourced cross-sectional study using AllerSearch

Inomata¹,

Sung²,

Fujio³

et al. 2023

Allergology International

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Enhancing evidence-informed policymaking in medicine and healthcare: stakeholder involvement in the Commons Project for rare diseases in Japan

Kogetsu,

Isono,

Aikyo

et al. 2023

Res Involv Engagem

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Background Although stakeholder involvement in policymaking is attracting attention in the fields of medicine and healthcare, a practical methodology has not yet been established. Rare-disease policy, specifically research priority setting for the allocation of limited research resources, is an area where evidence generation through stakeholder involvement is expected to be effective. We generated evidence for rare-disease policymaking through stakeholder involvement and explored effective collaboration among stakeholders. Methods We constructed a space called ‘Evidence-generating Commons’, where patients, family members, researchers, and former policymakers can share their knowledge and experiences and engage in continual deliberations on evidence generation. Ten rare diseases were consequently represented. In the ‘Commons’, 25 consecutive workshops were held predominantly online, from 2019 to 2021. These workshops focused on (1) clarification of difficulties faced by rare-disease patients, (2) development and selection of criteria for priority setting, and (3) priority setting through the application of the criteria. For the first step, an on-site workshop using sticky notes was held. The data were analysed based on KJ method. For the second and third steps, workshops on specific themes were held to build consensus. The workshop agendas and methods were modified based on participants’ feedback. Results The ‘Commons’ was established with 43 participants, resulting in positive effects such as capacity building, opportunities for interactions, mutual understanding, and empathy among the participants. The difficulties faced by patients with rare diseases were classified into 10 categories. Seven research topics were identified as priority issues to be addressed including ‘impediments to daily life’, ‘financial burden’, ‘anxiety’, and ‘burden of hospital visits’. This was performed by synthesising the results of the application of the two criteria that were particularly important to strengthen future research on rare diseases. We also clarified high-priority research topics by using criteria valued more by patients and family members than by researchers and former policymakers, and criteria with specific perspectives. Conclusion We generated evidence for policymaking in the field of rare diseases. This study’s insights into stakeholder involvement can enhance evidence-informed policymaking. We engaged in comprehensive discussions with policymakers regarding policy implementation and planned analysis of the participants’ experiences in this project.

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Patient and public involvement in mobile health-based research for hay fever: a qualitative study of patient and public involvement implementation process

Cited by 8 publications

References 51 publications

The minimal clinically important difference of app‐based electronic patient‐reported outcomes for hay fever

The minimal clinically important difference of app‐based electronic patient‐reported outcomes for hay fever

Individual multidisciplinary clinical phenotypes of nasal and ocular symptoms in hay fever: Crowdsourced cross-sectional study using AllerSearch

Enhancing evidence-informed policymaking in medicine and healthcare: stakeholder involvement in the Commons Project for rare diseases in Japan

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