Table 4

Alignment of identified PROM items with PGHD effects, and reasons for their inclusion

Included PROM item/sReason for inclusionAlignment with PGHD effects
Game Experience questionnaire
poststudy items:
  1. The system gave error messages that clearly told me how to fix my problems.

  2. Whenever I made a mistake using the system, I could recover easily and quickly.

Response options: scale of 1 (strongly agree) to 7 (strongly disagree), and N/A.
These items could rate whether/how patients correct an action or behaviour, depending on the ease of resolving issues with the way PGHD is provided to them.Effect 1:
Influence health-related behavioural or attitude changes in patients.
Beck depression inventory:
A (Mood)
0 I do not feel sad.
1 I feel blue or sad.
B (Pessimism)
0 I am not particularly pessimistic or discouraged about my future.
1a I feel discouraged about my future.
C (Sense of failure)
0 I do not feel like a failure.
1 I feel I have failed more than the average person.
G (Self-hate)
0 I do not feel disappointed in myself.
1a I am disappointed in myself.
Response options: among a list of options, tick a statement if true.
These items could rate whether/how patients’ attitude may be affected by access to their PGHD.
Stroke-specific quality of life scale, mood items:
  1. I felt hopeless about my future.

  2. I was discouraged about my future.

  3. I had little confidence in myself.

Response options: strongly agree, moderately agree, neither agree nor disagree, moderately disagree or strongly disagree.
Game experience questionnaire
poststudy items:
  1. The information (such as online help, onscreen messages and other documentation) provided with this system is clear.

  2. It was easy to find the information I needed.

  3. The information provided for the system was easy to understand.

  4. The information was effective in helping me complete the tasks and scenarios.

After-scenario items:
3. Overall, I am satisfied with the support information (online help, messages, documentation) when completing the tasks.
Response options: scale of 1 (strongly agree) to 7 (strongly disagree), and N/A.
These items could rate whether/how patients completed tasks depending on the quality of PGHD provided.Effect 2:
Influence patient management of their own care, due to changes in feelings about their health status.
System usability questionnaire:
  1. I found the product unnecessarily complex.

  2. I think that I would need the support of a technical person to be able to use this product.

Response options: scale of 1 (strongly disagree) to 5 (strongly agree).
These items could rate whether/how patients’ understanding of PGHD was affected by the interface to and presentation of their data.
Relationship change scale:
1. Within the last 4 weeks, my satisfaction with myself as a person has become: (1) much less; (2) less; (3) unchanged; (4) greater; (5) much greater.
This item could rate the personal satisfaction of the patient after accessing PGHD.
Game Experience Questionnaire
poststudy item:
18. This system has all the functions and capabilities I expect it to have.
Response option: scale of 1 (strongly agree) to 7 (strongly disagree), and N/A.
This item could rate whether/how patients’ personal preferences for access to their data were supported by the system.Effect 4:
Facilitate personal care goals.
  • N/A, not available; PGHD, person-generated health data; PROMs, patient-reported outcome measures.