An online pain management program for people with hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder: a three-staged development process

Figures & data

Figure 1. Flowchart of Delphi process. HCP = Healthcare professional, hEDS = hypermobile Ehlers-Danlos Syndrome, HSD = Hypermobility Spectrum Disorder.

A flowchart of the modified Delphi process used in the study. Survey 1 asked participants to provide up to 20 topics they feel should be included in a hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder specific online pain management program, and survey 2 asked participants to rate the importance of the topics. Consensus between groups was set a priori at ≥75% and for topics that did not reach consensus, the research team made the final decision.

Figure 2. Participant response rate flowchart. HCP = Healthcare professional, hEDS = hypermobile Ehlers-Danlos Syndrome, HSD = hypermobility spectrum disorder, SD = standard deviation.

A flowchart depicting participant response rates. Twenty-nine healthcare professionals and 396 hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder participants completed survey 1. Twelve healthcare professionals and 151 hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder participants completed survey 2.

Table 1. HCP and hEDS/HSD participant demographics.

	HCP number (%)	hEDS/HSD number (%)
Gender
Man/Male	3 (10)	17 (4)
Woman/Female	26 (90)	354 (89)
Non-binary	0 (0)	22 (6)
Prefer not to answer	0 (0)	0 (0)
Other^a	0 (0)	3 (1)
Age (years)
Mean	47.8	37.2
Range	29 to 68	18 to 76
SD	11.1	12.2
Country of practice/residence
Asia	0 (0)	3 (0.76)
Africa	0 (0)	4 (1.01)
North America	12 (41)	186 (46.97)
South America	0 (0)	3 (0.76)
Antarctica	0 (0)	0 (0)
Europe	4 (14)	104 (26.26)
Oceania	13 (45)	96 (24.24)
HCP
Main profession
Medical doctor	2 (7)
Researcher	0 (0)
Dietitian	0 (0)
Physiotherapist	19 (66)
Occupational therapist	1 (3)
Speech therapist	0 (0)
Exercise physiologist	0 (0)
Chiropractor	0 (0)
Other^b	7 (24)
Years of experience
Average	11.78
Range	5 to 27
SD	6.47
hEDS/HSD
Diagnosed by
Medical doctor		124 (31)
Rheumatologist		141 (36)
Geneticist		131 (33)

^a 1 Transmasculine, 1 Transgender, 1 Man/non-binary.

^b 1 Osteopath, 1 Natural Health practitioner, 1 Clinical Nutritionist and Lifestyle Medicine Practitioner, 1 Nutritional Therapist, 2 Psychologists/Clinical psychologist, 1 Podiatrist.

Figure 3. (a): Importance of online pain management program. HCP = Healthcare professional, hEDS = hypermobile Ehlers-Danlos Syndrome, HSD = hypermobility spectrum disorder. (b): Importance of online HCP contact as part of program. (c): Importance of other components to program.

Three horizontal bar graphs. First graph shows 69% of healthcare professionals and 81% of hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder participants rated an online pain management program as “important” or “very important”. Second graph shows that 69% of both groups rate that it is “important” or “very important” to have regular online contact with a trained healthcare professional as part of the program. Third graph shows that participants with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder rated real-life case examples most highly, followed by online discussion forums, then quizzes (76%, 73% and 30%, respectively rated “important” or “very important).

Figure 4. (a): Duration of program. HCP = Healthcare professional, hEDS = hypermobile Ehlers-Danlos Syndrome, HSD = hypermobility spectrum disorder. (b): Time commitment per week. (c): Regularity of online HCP contact.

Three vertical bar graphs. First graph shows that most participants felt the program should run for 6-weeks (24% healthcare professionals and 23% hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder participants). Second graph shows that most participants felt it should run for 1 hour per week (52% healthcare professionals and 43% hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder participants). The last graph shows that most participants felt healthcare professional contact should be held fortnightly (38% of healthcare professionals and 33% of hypermobile Ehlers-Danlos Syndrome or hypermobility spectrum disorder participants).

Figure 5. Categorised topics. hEDS = hypermobile Ehlers-Danlos Syndrome, HSD = hypermobility spectrum disorder.

Diagram of categorized topics from survey results. Thirty-five topics were included and groups into six domains: About hypermobile Ehlers-Danlos Syndrome and hypermobility spectrum disorder; Biology of pain in hypermobile Ehlers-Danlos Syndrome and hypermobility spectrum disorder; Access to healthcare personnel; Medical trends, surgery and pharmacological management of pain; Non-pharmacological management of pain; and Other topics that include Neurodiversity and pain and pelvic health and pain.

Table 2. Usability participant demographics.

	number (%)
Gender
Man/Male	1 (20)
Woman/Female	4 (80)
Non-binary	0 (0)
Prefer not to answer	0 (0)
Other	0 (0)
Age (years)
Mean	27.6
Range	25 to 33
SD	3.44
Profession
Macquarie university Doctor of Physiotherapy new graduate (<4 years post-graduation)	4 (80)
Macquarie university Final year Doctor of Physiotherapy student	1 (20)
Macquarie university Doctor of Medicine new graduate (<4 years post-graduation	0 (0)
Macquarie University Final year Doctor of Medicine student	0 (0)

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article and its supplementary materials. Raw data files related to this study can be found at: Chan, Cliffton; Chew, Min Tze; Ilhan, Emre; Nicholson, Leslie (2024). The raw data files for "An online pain management program for people with hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder: a three-staged development process". Macquarie University. Dataset. https://doi.org/10.25949/24892329.v1.