Comments from respondents of the consumer open review survey who did not agree that the OPH-SS is complete with comments from the Working Group
| Parents (6% did not agree) | Professionals (2%–12% did not agree)* | Included in OPH-SS (Yes/No) | Answers from the Working Group | Examples of specific questions contained in the included tools |
| Outcomes | ||||
| Screen time | No | There is no standardised way to measure it yet | ||
| General happiness; joy | Yes | Included in PROMIS-General Health and AQoL-8D | How often do you feel really sad? How often do you have fun with friends? How often do you feel happy? How often do you feel pleasure? | |
| Accessibility to quality healthcare | No | No outcome. It could be uptaken as a case-mix variable, but hard to measure in a standardised way worldwide. | ||
| Social interaction with peers and parents; social well-being; social environment in family and with friends | Social interactions with family, peers and adults should be defined by its own outcome separately from general functioning and development. | Yes | Included in PROMIS-General Health and AQoL-8D. We tried to reduce the amount of tools and questions to answer in order to increase the uptake and feasibility of the OPH-SS. Therefore, it is not measured by a specific social interaction instrument. | How often do you feel socially excluded or left out? How often do you have fun with friends? How often do your parents listen to your ideas? Does your health affect your relationship with your family? How satisfying are your close relationships (family and friends)? How much do you enjoy your close relationships (family and friends)? How often do you feel socially isolated? |
| Treatment in school | No | Not qualified to be included in a minimum set of health outcomes | ||
| Bullying | Yes (?) | It might be detected by questions in PROMIS-General Health and AQoL-8D | How often do you feel socially excluded or left out? How often do you have fun with friends? How often do you feel socially isolated? | |
| Fine motor skills | Yes | Measured by CDC’s Developmental Milestones Checklist. | Makes or copies straight lines and circles; Pours, cuts with supervision, and mashes own food; Uses a fork and spoon and sometimes a table knife | |
| Lifestyle factors, including addictions, should be included in the older age ranges. | No | Not qualified to be included in a minimum set of health outcomes | ||
| Hearing should be assessed for all age ranges. | Yes/No | It is not measured by any tool only for one age range between 13 and 17 years. | ||
| Case-mix | ||||
| Health problems/medical condition/disease specifics | Yes | Measured by Case-mix variable 'Diagnosis' | ICD-10 or Snomed-CT | |
| Genetics | No | Not feasible to measure worldwide, ethical aspects have to be considered | ||
| Home environment in terms of parents and access to food, healthcare and sanitation. | No | Not qualified to be included in a minimum set of health outcomes | ||
| Presence of complications during pregnancy as well as prematurity of the infant | No | Not qualified to be included in a minimum set of health outcomes |
*For more information about agreement of completeness from health professionals, see table 1.
AQoL-8D, Assessment of Quality of Life-8 Dimensions; OPH-SS, Overall Pediatric Health Standard Set; PROMIS, Patient-Reported Outcome Measurement Information System.