HOPE Pilot Quantitative Raw Data (Feasibility, Appropriateness, Acceptability, Clinical Effectiveness Outcome measures)

dataset

posted on 2025-02-07, 03:17 authored by Cliffton ChanCliffton Chan, Min Tze ChewMin Tze Chew, Emre IlhanEmre Ilhan, Verity PaceyVerity Pacey, Sarah Kobayashi, Leslie NicholsonLeslie Nicholson, Alan Hakim

The Hypermobile Online Pain managemEnt (HOPE) program was developed for people with painful hypermobility syndromes and was pilot tested in this present study. We conducted a pilot randomised controlled trial to assess Feasibility of Intervention Measure (FIM), Acceptability of Intervention Measure (AIM) and Intervention Appropriateness Measure (IAM) as well as clinical effectiveness outcomes including brief pain inventory, bristol impact of hypermobility, DASS, pain self-efficacy and global impression of change (see readme files for names of all questionnaires used). Outcomes were assessed using online surveys at baseline, post-treatment and 3-months post-treatment. Results showed that the HOPE program was feasible, acceptable and appropriate, with some improvements in pain and impact of hypermobility. A fully powered trial is warranted to further explore clinical effectiveness of the program.This is the raw data from this pilot randomised controlled trial of the "HOPE for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) – A pilot randomized controlled trial of feasibility, acceptability and appropriateness" study. MQ HREC approval was gained (520231630154261) and the ANZCTR registration is ACTRN12623001323617.

Funding

N/A

History

Related Materials

1.
DOI - Is supplement to HOPE Pilot Qualitative Interview Raw Data (Feasibility, Appropriateness, Acceptability)

Research Project ID

MQ Ethics NO. 16301

Q/A Log

Institutional review completed
FAIR assessment completed

FAIR Self Assessment Summary

This text has been generated from a tool that has been adapted from the ARDC FAIR Assessment Tool Findable -------- Does the dataset have any identifiers assigned? Global Is the dataset identifier included in all metadata records/files describing the data? Yes How is the data described with metadata? Comprehensively (see suggestion) using a recognised formal machine-readable metadata schema What type of repository or registry is the metadata record in? Data is in one place but discoverable through several registries Accessible ---------- How accessible is the data? Publicly accessible Is the data available online without requiring specialised protocols or tools once access has been approved? Standard web service API (e.g. OGC) Will the metadata record be available even if the data is no longer available? Yes Interoperable ------------- What (file) format(s) is the data available in? In a structured, open standard, machine-readable format What best describes the types of vocabularies/ontologies/tagging schemas used to define the data elements? Standardised vocabularies/ontologies/schema without global identifiers How is the metadata linked to other data and metadata (to enhance context and clearly indicate relationships)? The metadata record includes URI links to related metadata, data and definitions Reusable -------- Which of the following best describes the license/usage rights attached to the data? Standard machine-readable license (e.g. Creative Commons) How much provenance information has been captured to facilitate data reuse? Partially recorded