general_health_promis
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Table of Contents
General health (PROMIS)
The Patient Reported Outcomes Measurement Information System-29 Profile v1.0 (PROMIS-29) (section: diseases & symptoms) is a collection of seven short forms measuring the following seven domains of self-reported health in 4 items each:
- depression
- anxiety
- physical function
- pain interference (including a 5th item on pain intensity)
- fatigue
- sleep disturbance
- satisfaction with participation in social roles
The PROMIS-29 for adults was used in Lifelines general assessment 2B and in additional assessment ACTQ.
Underage participants received the 10/8-item PROMIS short forms on fatigue and social roles.
Background
The PROMIS-29 Profile is part of a large system of item banks and instruments that have been validated extensively in the US. Each item bank was developed and validated separately. Subsequently, short forms were developed for each bank, which were combined in the PROMIS-29 Profile.
The short forms that make up the PROMIS Profile Instruments include “high information” items. The selection of items was in part based on item rankings within each domain using two psychometric criteria: (1) maximum interval information, and 2) Computer Adaptive Testing (CAT) simulations.
The PROMIS-29 Profile has been translated into Dutch-Flemish, using a standardized methodology of forward and backward translations. According to the PROMIS standards short forms can be released for use in new languages after a high quality translation.
It is expected that PROMIS instruments (especially PROMIS CATs) will soon become the gold standard world-wide for the measurement of patient-reported health. PROMIS CATs are, however, not yet available for use in the Netherlands because of two reasons:
- CAT software and a web-based infrastructure to set up studies using CATs are not yet available. The Dutch-Flemish PROMIS group is working on this.
- Reference scores from the Dutch general population are not yet available. These are needed because all PROMIS scores are expressed as T-scores, in which scores have a mean of 50 and a standard deviation of 10 compared with the general population.
Dutch reference scores are to be preferred over US reference scores. The implementation of the PROMIS-29 Profile in Lifelines would help to estimate Dutch reference scores for seven PROMIS item banks (if necessary, using CBS census data for weighting), which will facilitate the implementation of CATs for these banks.
Validation
Content validity of the PROMIS instruments can be considered good because they are based on a clear consensus-based conceptual model and conceptual definitions of all domains, extensive literature search, including consideration of all items from all existing Patient Reported Outcomes, qualitative research, including 79 focus groups with patients from different disease populations, and sophisticated psychometric analyses (Item Response Theory).
Construct validity was supported by moderate to strong correlations with legacy measures (i.e. traditional Patient Reported Outcomes that measure similar constructs) in the general US population. For example, moderate to strong correlations with legacy measures were found for Physical Function (0.88 with HAQ, 0.90 with SF36-PF), Fatigue (0.91 with FACIT, 0.85 with SF-36-VT), Pain Interference (0.84 with BDI Interference), Depression (0.83 with CES-D), and Anxiety (0.80 with MASQ).
Reliability of PROMIS instruments was assessed in the general US population by calculating each item bank’s standard error and reliability coefficients, by T-scores. Reliability (defined here as measurement precision along the continuum) was high for all PROMIS instruments from scores at the mean to 2 or more SD units worse than the mean.
Several studies have shown that the measurement error of PROMIS instruments is smaller than the measurement error of questionnaires measuring comparable constructs (for example PROMIS versus SF-36). These studies were performed in patients with arthritis, depression and patients in a rehabilitation setting.
In 2022, the measurement properties of the Dutch PROMIS-29 v2.1 profile was assessed in Lifelines participants with and without chronic conditions1)
Variables
| Questions English | Questions Dutch | Code | Variable | Assessment | Age |
| can you do chores like vacuuming or gardening? / physical functioning | kunt u klusjes doen zoals stofzuigen of in de tuin werken? / lichamelijk functioneren | promis_physical_adu_q_01 | PROMIS1 | 2B ACTQ | 18+ |
| can you go up and down stairs at a normal pace? / physical functioning | kunt u in een normaal tempo trappen op- en afgaan? / lichamelijk functioneren | promis_physical_adu_q_02 | PROMIS2 | 2B ACTQ | 18+ |
| are you able to walk for at least 15 minutes? / physical functioning | kunt u een wandeling van ten minste 15 minuten maken? / lichamelijk functioneren | promis_physical_adu_q_03 | PROMIS3 | 2B ACTQ | 18+ |
| are you able to run errands and go shopping? / physical functioning | kunt u boodschappen doen en winkelen? / lichamelijk functioneren | promis_physical_adu_q_04 | PROMIS4 | 2B ACTQ | 18+ |
| i felt anxious / anxiety (please answer for the past 7 days) | ik voelde me angstig / angst (geef aub antwoord voor de afgelopen 7 dagen) | promis_anxiety_adu_q_05 | PROMIS5 | 2B ACTQ | 18+ |
| i found it difficult to focus on something other than my anxiety and concern / anxiety (please answer for the past 7 days) | ik vond het moeilijk om me op iets anders dan mijn angst en bezorgdheid te concentreren / angst (geef aub antwoord voor de afgelopen 7 dagen) | promis_anxiety_adu_q_06 | PROMIS6 | 2B ACTQ | 18+ |
| my worries were more than i could take / anxiety (please answer for the past 7 days) | mijn zorgen waren me te veel / angst (geef aub antwoord voor de afgelopen 7 dagen) | promis_anxiety_adu_q_07 | PROMIS7 | 2B ACTQ | 18+ |
| i felt ill at ease / anxiety (please answer for the past 7 days) | ik voelde me slecht op mijn gemak / angst (geef aub antwoord voor de afgelopen 7 dagen) | promis_anxiety_adu_q_08 | PROMIS8 | 2B ACTQ | 18+ |
| i felt worthless / depression (please answer for the past 7 days) | ik voelde me alsof ik niets waard was / depressie (geef aub antwoord voor de afgelopen 7 dagen) | promis_depression_adu_q_09 | PROMIS9 | 2B ACTQ | 18+ |
| i felt helpless / depression (please answer for the past 7 days) | ik voelde me hulpeloos / depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_depression_adu_q_10 | PROMIS10 | 2B ACTQ | 18+ |
| i felt depressed / depression (please answer for the past 7 days) | ik voelde me depressief / depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_depression_adu_q_11 | PROMIS11 | 2B ACTQ | 18+ |
| i felt hopeless / depression (please answer for the past 7 days) | ik voelde me zonder hoop / depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_depression_adu_q_12 | PROMIS12 | 2B ACTQ | 18+ |
| i suffer from fatigue / fatigue (please answer for the past 7 days) | ik heb last van vermoeidheid / vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_fatigue_adu_q_13 | PROMIS13 | 2B ACTQ | 18+ |
| how tired were you, on average? / fatigue (please answer for the past 7 days) | hoe vermoeid was u gemiddeld genomen? / vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_fatigue_adu_q_14 | PROMIS14 | 2B ACTQ | 18+ |
| i have difficulty getting starting with things because i am so tired / fatigue (please answer for the past 7 days) | het kost me moeite om met dingen te beginnen omdat ik zo moe ben / vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_fatigue_adu_q_15 | PROMIS15 | 2B ACTQ | 18+ |
| how 'worn out' did you feel on average? / fatigue (please answer for the past 7 days) | hoe afgepeigerd voelde u zich gemiddeld genomen? / vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_fatigue_adu_q_16 | PROMIS16 | 2B ACTQ | 18+ |
| the quality of my sleep was / sleep disorders (please answer for the past 7 days) | de kwaliteit van mijn slaap was… / slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_sleep_adu_q_17 | PROMIS17 | 2B ACTQ | 18+ |
| my sleep was refreshing / sleep disorders (please answer for the past 7 days) | mijn slaap was verkwikkend / slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_sleep_adu_q_18 | PROMIS18 | 2B ACTQ | 18+ |
| i had a sleeping disorder / sleep disorders (please answer for the past 7 days) | ik had een slaapprobleem / slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_sleep_adu_q_19 | PROMIS19 | 2B ACTQ | 18+ |
| i had difficulty falling asleep / sleep disorders (please answer for the past 7 days) | ik had moeite met in slaap vallen / slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) | promis_sleep_adu_q_20 | PROMIS20 | 2B ACTQ | 18+ |
| i have difficulty engaging in all my normal leisure pursuits with others / ability to participate in social roles and activities | ik heb moeite om al mijn gewone vrijetijdsactiviteiten met anderen te doen / vermogen om een aandeel te hebben in sociale rollen en activiteiten | promis_social_adu_q_21 | PROMIS21 | 2B ACTQ | 18+ |
| i have difficulty doing all the family activities that i want to / ability to participate in social roles and activities | ik heb moeite om alle gezins-/ familieactiviteiten te doen die ik wil doen / vermogen om een aandeel te hebben in sociale rollen en activiteiten | promis_social_adu_q_22 | PROMIS22 | 2B ACTQ | 18+ |
| i have difficulty doing all my normal work (including work at home) / ability to participate in social roles and activities | ik heb moeite om al mijn gewone werk (inclusief werk thuis) te doen / vermogen om een aandeel te hebben in sociale rollen en activiteiten | promis_social_adu_q_23 | PROMIS23 | 2B ACTQ | 18+ |
| i have difficulty doing all the activities with friends that i want to / ability to participate in social roles and activities | ik heb moeite om alle activiteiten met vrienden te doen die ik wil doen / vermogen om een aandeel te hebben in sociale rollen en activiteiten | promis_social_adu_q_24 | PROMIS24 | 2B ACTQ | 18+ |
| to what extent did pain hamper you in your daily activities? / limitations due to pain (please answer for the past 7 days) | in welke mate belemmerde pijn u bij uw dagelijkse activiteiten? / belemmeringen door pijn (geef aub antwoord voor de afgelopen 7 dagen) | promis_pain_adu_q_25 | PROMIS25 | 2B ACTQ | 18+ |
| to what extent did pain hamper you in your work in and around the house? / limitations due to pain (please answer for the past 7 days) | in welke mate belemmerde pijn u bij werk in en om het huis? / belemmeringen door pijn (geef aub antwoord voor de afgelopen 7 dagen) | promis_pain_adu_q_26 | PROMIS26 | 2B ACTQ | 18+ |
| to what extent did pain hamper you in your ability to participate in social activities? / limitations due to pain (please answer for the past 7 days) | in welke mate belemmerde pijn uw vermogen om deel te nemen aan sociale activiteiten? / belemmeringen door pijn (geef aub antwoord voor de afgelopen 7 dagen) | promis_pain_adu_q_27 | PROMIS27 | 2B ACTQ | 18+ |
| to what extent did pain hamper you in your household chores? / limitations due to pain (please answer for the past 7 days) | in welke mate belemmerde pijn u bij uw huishoudelijke klusjes? / belemmeringen door pijn (geef aub antwoord voor de afgelopen 7 dagen) | promis_pain_adu_q_28 | PROMIS28 | 2B ACTQ | 18+ |
| how would you rate the pain you feel, on average? / pain intensity (please provide answer for the past 7 days) | hoe zou u gemiddeld uw pijn beoordelen? / pijnintensiteit (geef aub antwoord voor de afgelopen 7 dagen) | promis_pain_adu_q_29 | PROMIS29 | 2B ACTQ | 18+ |
| my tiredness made it difficult to play or to get away with my friends as much as i would have liked (the past 7 days) | door mijn moeheid was het moeilijk om zo veel als ik zou willen te spelen of weg te gaan met mijn vrienden of vriendinnen (de afgelopen 7 dagen) | promis_fatigue_ach_q_01 | ACHPROMISF1 | 2A | 13-17 |
| i felt weak (the past 7 days) | ik voelde me zwak (de afgelopen 7 dagen) | promis_fatigue_ach_q_02 | ACHPROMISF2 | 2A | 13-17 |
| i tired easily (the past 7 days) | ik werd gauw moe (de afgelopen 7 dagen) | promis_fatigue_ach_q_03 | ACHPROMISF3 | 2A | 13-17 |
| i found it hard to keep up with schoolwork because i was tired (the past 7 days) | ik kon moeilijk bijblijven met mijn werk voor school omdat ik moe was (de afgelopen 7 dagen) | promis_fatigue_ach_q_04 | ACHPROMISF4 | 2A | 13-17 |
| i had difficulty finishing things because i was too tired (the past 7 days) | ik had moeite om dingen af te maken omdat ik te moe was (de afgelopen 7 dagen) | promis_fatigue_ach_q_05 | ACHPROMISF5 | 2A | 13-17 |
| i had difficulty starting things because i was too tired (the past 7 days) | ik had moeite om met dingen te beginnen omdat ik te moe was (de afgelopen 7 dagen) | promis_fatigue_ach_q_06 | ACHPROMISF6 | 2A | 13-17 |
| i was so tired that i found it difficult to pay attention (the past 7 days) | ik was zo moe dat ik moeite had om op te letten (de afgelopen 7 dagen) | promis_fatigue_ach_q_07 | ACHPROMISF7 | 2A | 13-17 |
| i was too tired to engage in sports or exercise (the past 7 days) | ik was te moe om te sporten of te bewegen (de afgelopen 7 dagen) | promis_fatigue_ach_q_08 | ACHPROMISF8 | 2A | 13-17 |
| i was too tired to engage in outdoor activities (the past 7 days) | ik was te moe om buiten dingen te doen (de afgelopen 7 dagen) | promis_fatigue_ach_q_09 | ACHPROMISF9 | 2A | 13-17 |
| i was too tired to enjoy the things i like to do (the past 7 days) | ik was te moe om te genieten van de dingen die ik leuk vind om te doen (de afgelopen 7 dagen) | promis_fatigue_ach_q_10 | ACHPROMISF10 | 2A | 13-17 |
| their tiredness made it difficult for my child to play or to get away with their friends as much as they would have liked (the past 7 days) | door moeheid was het moeilijk voor mijn kind om zo veel als hij/zij zou willen te spelen of weg te gaan met vrienden of vriendinnen (de afgelopen 7 dagen) | promis_fatigue_chi_q_01 | CHPROMISF1 | 2A | 4-12 |
| my child felt weak (the past 7 days) | mijn kind voelde zich zwak (de afgelopen 7 dagen) | promis_fatigue_chi_q_02 | CHPROMISF2 | 2A | 4-12 |
| my child tired easily (the past 7 days) | mijn kind werd gauw moe (de afgelopen 7 dagen) | promis_fatigue_chi_q_03 | CHPROMISF3 | 2A | 4-12 |
| my child found it hard to keep up with schoolwork because they were tired (the past 7 days) | mijn kind kon moeilijk bijblijven met werk voor school omdat hij/zij moe was (de afgelopen 7 dagen) | promis_fatigue_chi_q_04 | CHPROMISF4 | 2A | 4-12 |
| my child had difficulty finishing things because they were too tired (the past 7 days) | mijn kind had moeite om dingen af te maken omdat hij/zij te moe was (de afgelopen 7 dagen) | promis_fatigue_chi_q_05 | CHPROMISF5 | 2A | 4-12 |
| my child had difficulty starting on things because they were too tired (the past 7 days) | mijn kind had moeite om met dingen te beginnen omdat hij/zij te moe was (de afgelopen 7 dagen) | promis_fatigue_chi_q_06 | CHPROMISF6 | 2A | 4-12 |
| my child was so tired that they had trouble paying attention (the past 7 days) | mijn kind was zo moe dat hij/zij moeite had om op te letten (de afgelopen 7 dagen) | promis_fatigue_chi_q_07 | CHPROMISF7 | 2A | 4-12 |
| my child was too tired to engage in sports or exercise (the past 7 days) | mijn kind was te moe om te sporten of te bewegen (de afgelopen 7 dagen) | promis_fatigue_chi_q_08 | CHPROMISF8 | 2A | 4-12 |
| my child was too tired to engage in outdoor activities (the past 7 days) | mijn kind was te moe om buiten dingen te doen (de afgelopen 7 dagen) | promis_fatigue_chi_q_09 | CHPROMISF9 | 2A | 4-12 |
| my child was too tired to enjoy the things they liked doing (the past 7 days) | mijn kind was te moe om te genieten van de dingen die hij/zij leuk vindt om te doen (de afgelopen 7 dagen) | promis_fatigue_chi_q_10 | CHPROMISF10 | 2A | 4-12 |
| i felt accepted by other children of my age (the past 7 days) | ik voelde me geaccepteerd door andere kinderen van mijn leeftijd (de afgelopen 7 dagen) | promis_social_ach_q_01 | ACHPROMISPR1 | 2A | 13-17 |
| i was able to rely on my friends (the past 7 days) | ik kon op mijn vrienden en vriendinnen rekenen (de afgelopen 7 dagen) | promis_social_ach_q_02 | ACHPROMISPR2 | 2A | 13-17 |
| i was able to make friends easily (the past 7 days) | ik kon makkelijk vrienden of vriendinnen maken (de afgelopen 7 dagen) | promis_social_ach_q_03 | ACHPROMISPR3 | 2A | 13-17 |
| my friends and i help each other (the past 7 days) | mijn vrienden en vriendinnen en ik hielpen elkaar (de afgelopen 7 dagen) | promis_social_ach_q_04 | ACHPROMISPR4 | 2A | 13-17 |
| other children wanted to be my friend (the past 7 days) | andere kinderen wilden mijn vriend of vriendin zijn (de afgelopen 7 dagen) | promis_social_ach_q_05 | ACHPROMISPR5 | 2A | 13-17 |
| other children wanted to be with me (the past 7 days) | andere kinderen wilden bij me zijn (de afgelopen 7 dagen) | promis_social_ach_q_06 | ACHPROMISPR6 | 2A | 13-17 |
| other children wanted to talk to me (the past 7 days) | andere kinderen wilden met me praten (de afgelopen 7 dagen) | promis_social_ach_q_07 | ACHPROMISPR7 | 2A | 13-17 |
| i could talk to my friends about anything (the past 7 days) | ik kon over alles praten met mijn vrienden of vriendinnen (de afgelopen 7 dagen) | promis_social_ach_q_08 | ACHPROMISPR8 | 2A | 13-17 |
| my child felt accepted by other children of the same age (the past 7 days) | mijn kind voelde zich geaccepteerd door andere kinderen van zijn/haar leeftijd (de afgelopen 7 dagen) | promis_social_chi_q_01 | CHPROMISPR1 | 2A | 4-12 |
| my child could count on their friends (the past 7 days) | mijn kind kon op zijn/haar vrienden en vriendinnen rekenen (de afgelopen 7 dagen) | promis_social_chi_q_02 | CHPROMISPR2 | 2A | 4-12 |
| my child was able to make friends easily (the past 7 days) | mijn kind kon makkelijk vrienden of vriendinnen maken (de afgelopen 7 dagen) | promis_social_chi_q_03 | CHPROMISPR3 | 2A | 4-12 |
| my child and their friends helped each other (the past 7 days) | mijn kind en zijn/haar vrienden en vriendinnen hielpen elkaar (de afgelopen 7 dagen) | promis_social_chi_q_04 | CHPROMISPR4 | 2A | 4-12 |
| other children wanted to be my child’s friend (the past 7 days) | andere kinderen wilden vriend of vriendin zijn met mijn kind (de afgelopen 7 dagen) | promis_social_chi_q_05 | CHPROMISPR5 | 2A | 4-12 |
| other children wanted to be with my child (the past 7 days) | andere kinderen wilden bij mijn kind zijn (de afgelopen 7 dagen) | promis_social_chi_q_06 | CHPROMISPR6 | 2A | 4-12 |
| other children wanted to talk to my child (the past 7 days) | andere kinderen wilden met mijn kind praten (de afgelopen 7 dagen) | promis_social_chi_q_07 | CHPROMISPR7 | 2A | 4-12 |
| other children wanted to play with my child (the past 7 days) | andere kinderen wilden met mijn kind spelen (de afgelopen 7 dagen) | promis_social_chi_q_08 | CHPROMISPR8 | 2A | 4-12 |
1)
Elsman E.B. et al. (2022) Measurement properties of the Dutch PROMIS-29 v2.1 profile in people with and without chronic conditions; Quality of Life Research 176[1]
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