Dataset Information

A descriptive system for the Infant health-related Quality of life Instrument (IQI): Measuring health with a mobile app.

ABSTRACT:

Background

The assessment of health-related quality of life (HRQoL) is important for health outcomes research, disease modeling studies and comparisons of different healthcare interventions. Yet, only a few tools are available to assess HRQoL in 0-1-year-old infants. Furthermore, there is a need for an instrument able to assess HRQoL with a single, standardized, overall score in the first year of life. Here we described the development of the Infant health-related Quality of life Instrument (IQI), a generic, preference-based instrument that can be administered through a mobile application for assessing HRQoL in 0-1-year-old infants.

Methods

A multi-step development process began by extracting candidate health concepts from relevant measures identified by two literature searches. Next, three panels, with experts from Asia, Europe, New Zealand and United States of America, and two surveys, with primary caregivers in New Zealand, Singapore, and the United Kingdom, evaluated the relevance of the candidate health concepts, organized them into attributes based on their similarities, explored alternative attributes and generated response scales. Additional interviews assessed the cross-cultural interpretability, parents' understanding of health attributes, and the usability of the mobile application.

Results

The final list of 7 health attributes included in the IQI consisted of sleeping, feeding, breathing, stooling/poo, mood, skin, and interaction. The users' experiences with the mobile application were generally positive.

Conclusions

The IQI is the first generic, preference-based, instrument designed to assess overall HRQoL in 0-1-year old infants. It is short and easy-to-administer through a mobile application. Moreover, close attention was paid to the opinions of the infants' primary caregivers during the instrument and mobile application development process.

SUBMITTER: Jabrayilov R

PROVIDER: S-EPMC6118381 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Publications

A descriptive system for the Infant health-related Quality of life Instrument (IQI): Measuring health with a mobile app.

Jabrayilov Ruslan R van Asselt Antoinette D I ADI Vermeulen Karin M KM Volger Sheri S Detzel Patrick P Dainelli Livia L Krabbe Paul F M PFM

PloS one 20180831 8

<h4>Background</h4>The assessment of health-related quality of life (HRQoL) is important for health outcomes research, disease modeling studies and comparisons of different healthcare interventions. Yet, only a few tools are available to assess HRQoL in 0-1-year-old infants. Furthermore, there is a need for an instrument able to assess HRQoL with a single, standardized, overall score in the first year of life. Here we described the development of the Infant health-related Quality of life Instrum ...[more]

PMID: 30169510

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Project description:BACKGROUND:Because of a lack of preference-based health-related quality of life (HRQoL) instruments suitable for infants aged 0-12 months, we previously developed the Infant QoL Instrument (IQI). The present study aimed to generate an algorithm to estimate utilities for the IQI. METHODS:Via an online survey, respondents from the general population and primary caregivers from China-Hong Kong, the UK, and the USA were presented 10 discrete choice scenarios based on the IQI classification system. An additional sample of respondents from the general population were also asked if they considered the examined health states to be worse than death. Coefficients for the IQI item levels were obtained with a conditional logit model based on the responses of the primary caregivers for IQI states only. These coefficients were then normalized using the rank-ordered logit model based on the responses from the general population who assessed "death" as a choice option. In this way, the values were rescaled from full health (1.0) to death (0.0), and consequently, they became suitable for the computation of quality-adjusted life years. RESULTS:The total sample consisted of 1409 members of the general population and 1229 primary caregivers. Results indicated that, out of the 7 IQI items ("sleeping," "feeding," "breathing," "stooling/poo," "mood," "skin," and "interaction"), "breathing" had the highest impact on the HRQoL of infants. Moreover, except for "stooling," all item levels were statistically significant. The general population sample considered none of the health states as worse than death. The utility value for the worst health state was 0.015 (State 4444444). CONCLUSIONS:The IQI is the first generic instrument to assess overall HRQoL in 0-1-year-old infants by providing values and utilities. Using discrete choice experiments, we demonstrated that it is possible to derive utilities of infant health states. The next step will be to collect IQI values in a clinical population of infants and to compare these values with those of other instruments.

Project description:BACKGROUND: Anticoagulation can reduce quality of life, and different models of anticoagulation management might have different impacts on satisfaction with this component of medical care. Yet, to our knowledge, there are no scales measuring quality of life and satisfaction with anticoagulation that can be generalized across different models of anticoagulation management. We describe the development and preliminary validation of such an instrument - the Duke Anticoagulation Satisfaction Scale (DASS). METHODS: The DASS is a 25-item scale addressing the (a) negative impacts of anticoagulation (limitations, hassles and burdens); and (b) positive impacts of anticoagulation (confidence, reassurance, satisfaction). Each item has 7 possible responses. The DASS was administered to 262 patients currently receiving oral anticoagulation. Scales measuring generic quality of life, satisfaction with medical care, and tendency to provide socially desirable responses were also administered. Statistical analysis included assessment of item variability, internal consistency (Cronbach's alpha), scale structure (factor analysis), and correlations between the DASS and demographic variables, clinical characteristics, and scores on the above scales. A follow-up study of 105 additional patients assessed test-retest reliability. RESULTS: 220 subjects answered all items. Ceiling and floor effects were modest, and 25 of the 27 proposed items grouped into 2 factors (positive impacts, negative impacts, this latter factor being potentially subdivided into limitations versus hassles and burdens). Each factor had a high degree of internal consistency (Cronbach's alpha 0.78-0.91). The limitations and hassles factors consistently correlated with the SF-36 scales measuring generic quality of life, while the positive psychological impact scale correlated with age and time on anticoagulation. The intra-class correlation coefficient for test-retest reliability was 0.80. CONCLUSIONS: The DASS has demonstrated reasonable psychometric properties to date. Further validation is ongoing. To the degree that dissatisfaction with anticoagulation leads to decreased adherence, poorer INR control, and poor clinical outcomes, the DASS has the potential to help identify reasons for dissatisfaction (and positive satisfaction), and thus help to develop interventions to break this cycle. As an instrument designed to be applicable across multiple models of anticoagulation management, the DASS could be crucial in the scientific comparison between those models of care.

Project description:BackgroundThe postnatal period poses numerous challenges for new parents. Various educational programs are available to support new parents during this stressful period. However, the usefulness of educational programs must be evaluated to ascertain their credibility.ObjectiveThe aim of this descriptive, qualitative study was to explore the views of parents of newborns with regard to the content and delivery of a mobile health (mHealth) app-based postnatal educational program.MethodsA qualitative semistructured interview guide was used to collect data from 17 participants who belonged to the intervention group of a randomized controlled trial. The intervention, a 4-week-long access to a mHealth app-based educational program, was evaluated. The interviews were conducted in English and at the participants' homes. Thematic analysis was used to analyze the data. The Consolidated Criteria for Reporting Qualitative Research checklist was used to report the findings.ResultsThe interviews revealed 4 main themes: (1) positive features of the mHealth app, (2) advice from midwives, (3) experiences gained from using the mHealth app, and (4) recommendations for the future. The participants evaluated the educational program to be a good source of information that was tailored to the local context. The different modes of delivery, including audio and video, accentuated the accessibility of information. The parents evaluated that the facilitator of the featured communication platform, a midwife, provided trustworthy advice. Belongingness to a virtual community beyond the hospital endowed the parents the confidence that they were not alone and were supported by other parents and health care professionals.ConclusionsAccording to the parents, the mHealth app-based educational program was helpful in supporting a multi-ethnic sample of parents during the postnatal period. This insight indicates that the program could be implemented in a wide community of parents in the postnatal period. The helpfulness of the educational program is a testament of the potential benefits of using telemedicine among new parents postnatally. Resources can also be dedicated toward extending the duration of access to the app beyond 1 month and developing relevant content for parents across the perinatal period.

Project description:BACKGROUND:Cancer patients often suffer from the physical and psychological burden of their disease and its treatment. This is frequently insufficiently identified and addressed in clinical practice. In the context of improving patient-centered care in oncological patients, patient-reported outcomes (PROs) represent an important addition to current routine care. So far, available PRO questionnaires for cancer patients are unsuitable for routine procedures due to their length and complexity. OBJECTIVE:This study aimed to develop and psychometrically test a short questionnaire to measure health-related quality of life (HrQoL) in cancer patients for use in routine care. METHODS:This observational study consists of two parts: (1) a qualitative study to develop a short questionnaire measuring HrQoL and (2) a quantitative study to psychometrically test this questionnaire in five oncological departments of a comprehensive cancer center. In part 1 of the study, semistructured interviews with 28 cancer patients, as well as five focus groups with 22 clinicians and nurses, were conducted to identify clinically relevant dimensions of HrQoL. The identified dimensions were complemented with related dimensions from empirical studies and reviewed via expert discussion. Based on this, a short instrument was developed. In part 2 of the study, the developed questionnaire was tested in cancer in- and outpatients at five participating oncological clinics using additional standardized questionnaires assessing HrQoL and other important PROs. The questionnaire was presented to more than 770 patients twice during treatment. RESULTS:The project started in May 2017 with recruitment for study phase I beginning in December 2017. Recruitment for study phases I and II ended in April 2018 and February 2019, respectively. After study phase II and psychometrical analyses, the newly developed questionnaire measuring the HrQoL of all cancer entities in routine care was finalized. CONCLUSIONS:With five to six dimensions and one item per dimension, the developed questionnaire is short enough to not disrupt routine procedures during treatment and is profound enough to inform clinicians about the patient's HrQoL impairments and status. TRIAL REGISTRATION:Open Science Framework Registries 10.17605/OSF.IO/Y7XCE; https://osf.io/y7xce/. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/17854.

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Project description:Health-related quality of life (HRQOL) is one of the most important outcome measures to be assessed by medical research. This study aims to develop and validate an instrument called the "health-related quality of life with six domains" (HRQ-6D), which aims to measure an individual's health-related quality of life within a 24 h period of time. This is a questionnaire development study involving five phases, which are (i) to explore the subject matter content for gaining a better understanding of the topic, (ii) to develop the questionnaire, (iii) to assess both its content validity and face validity, (iv) to conduct a pilot study, and finally, (v) to undertake a field testing of the questionnaire. For the field-testing phase, a cross-sectional study involving a self-administered survey for HRQ-6D items was conducted among healthcare workers with various health conditions. Exploratory factor analysis was initially applied to construct the major dimensions of the HRQ-6D. Confirmatory factor analysis was subsequently applied to evaluate the model fit of the overall framework of the HRQ-6D. The clinical utility of this HRQ-6D was also assessed via its association with actual clinical evidence. A total of 406 respondents participated in the survey. Six domains were identified from the analysis, namely "pain", "physical strength", "emotion", "self-care", "mobility", and "perception of future health" comprising two items in each domain. Each domain was reported to have a minimum value of Cronbach's alpha of 0.731, and the model fit for the overall framework of the HRQ-6D was also found to be excellent. Exploratory factor analysis was undertaken for the 12 items of the HRQ-6D. All the domains can be categorized into three major dimensions, namely "health", "body function", and "future perception", with a minimum value for their factor loadings of at least 0.507. A notable finding was that the HRQ-6D was significantly associated with an individual's existing comorbidities and current status of health (p < 0.05). This study successfully validated the HRQ-6D, and we found it to possess both excellent levels of reliability and validity and a satisfactory degree of model fit; it was also significantly associated with actual clinical evidence.

Dataset Information

A descriptive system for the Infant health-related Quality of life Instrument (IQI): Measuring health with a mobile app.

Background

Methods

Results

Conclusions

Publications

A descriptive system for the Infant health-related Quality of life Instrument (IQI): Measuring health with a mobile app.

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