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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:

  1. depression
  2. anxiety
  3. physical function
  4. pain interference (including a 5th item on pain intensity)
  5. fatigue
  6. sleep disturbance
  7. satisfaction with participation in social roles

The PROMIS-29 for adults was used in Lifelines general assessment 2B and in additional assessment QACT.
Underage participants received the 10-item PROMIS short form on fatigue in assessment 2A.

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 translation11.
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:

  1. 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.
  2. 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 banks15.

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)1-4.
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)5-10.
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 mean10. 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 setting12-14.

Variables

Questions English Questions Dutch Variable Assessment Age
Are you able to do chores such as vacuuming or yard work? Kunt u klusjes doen zoals stofzuigen of in de tuin werken? / Lichamelijk functioneren PROMIS1 2B QACT 18+
Are you able to go up and down stairs at a normal pace? Kunt u in een normaal tempo trappen op- en afgaan? / Lichamelijk functioneren PROMIS2 2B QACT 18+
Are you able to go for a walk of at least 15 minutes? Kunt u een wandeling van ten minste 15 minuten maken? / Lichamelijk functioneren PROMIS3 2B QACT 18+
Are you able to run errands and shop? Kunt u boodschappen doen en winkelen? / Lichamelijk functioneren PROMIS4 2B QACT 18+
In the past 7 days I felt fearful Ik voelde me angstig. / Angst (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS5 2B QACT 18+
In the past 7 days I found it hard to focus on anything other than my anxiety Ik vond het moeilijk om me op iets anders dan mijn angst en bezorgdheid te concentreren. / Angst (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS6 2B QACT 18+
In the past 7 days my worries overwhelmed me Mijn zorgen waren me te veel. / Angst (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS7 2B QACT 18+
In the past 7 days I felt uneasy Ik voelde me slecht op mijn gemak. / Angst (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS8 2B QACT 18+
In the past 7 days I felt worthless Ik voelde me alsof ik niets waard was. / Depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS9 2B QACT 18+
In the past 7 days I felt helpless Ik voelde me hulpeloos. / Depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS10 2B QACT 18+
In the past 7 days I felt depressed Ik voelde me depressief. / Depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS11 2B QACT 18+
In the past 7 days I felt hopeless Ik voelde me zonder hoop. / Depressie (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS12 2B QACT 18+
During the past 7 days I feel fatigued Ik heb last van vermoeidheid. / Vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS13 2B QACT 18+
In the past 7 days how fatigued were you on average? Hoe vermoeid was u gemiddeld genomen? / Vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS14 2B QACT 18+
During the past 7 days I have trouble starting things because I am tired 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) PROMIS15 2B QACT 18+
In the past 7 days how run-down did you feel on average? Hoe afgepeigerd voelde u zich gemiddeld genomen? / Vermoeidheid (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS16 2B QACT 18+
In the past 7 days my sleep quality was De kwaliteit van mijn slaap was… / Slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS17 2B QACT 18+
In the past 7 days my sleep was refreshing Mijn slaap was verkwikkend. / Slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS18 2B QACT 18+
In the past 7 days I had a problem with my sleep Ik had een slaapprobleem. / Slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS19 2B QACT 18+
In the past 7 days I had difficulty falling asleep Ik had moeite met in slaap vallen. / Slaapstoornissen (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS20 2B QACT 18+
I have trouble doing all of my regular leisure activities with others Ik heb moeite om al mijn gewone vrijetijdsactiviteiten met anderen te doen. / Vermogen om een aandeel te hebben in sociale rollen en activiteiten PROMIS21 2B QACT 18+
I have trouble doing all of the family activities that I want to do Ik heb moeite om alle gezins-/ familieactiviteiten te doen die ik wil doen. / Vermogen om een aandeel te hebben in sociale rollen en activiteiten PROMIS22 2B QACT 18+
I have trouble doing all of my usual work (include work at home) Ik heb moeite om al mijn gewone werk (inclusief werk thuis) te doen. / Vermogen om een aandeel te hebben in sociale rollen en activiteiten PROMIS23 2B QACT 18+
I have trouble doing all of the activities with friends that I want to do 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 PROMIS24 2B QACT 18+
In the past 7 days how much did pain interfere with your day to day activities? In welke mate belemmerde pijn u bij uw dagelijkse activiteiten? / Belemmeringen door pijn (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS25 2B QACT 18+
In the past 7 days how much did pain interfere with work around the home? In welke mate belemmerde pijn u bij werk in en om het huis? / Belemmeringen door pijn (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS26 2B QACT 18+
In the past 7 days how much did pain interfere with your ability to participate in social activities? In welke mate belemmerde pijn uw vermogen om deel te nemen aan sociale activiteiten? / Belemmeringen door pijn (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS27 2B QACT 18+
In the past 7 days how much did pain interfere with your household chores? In welke mate belemmerde pijn u bij uw huishoudelijke klusjes? / Belemmeringen door pijn (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS28 2B QACT 18+
In the past 7 days how would you rate your pain on average? Hoe zou u gemiddeld uw pijn beoordelen? / Pijnintensiteit (geef a.u.b. antwoord voor de afgelopen 7 dagen) PROMIS29 2B QACT 18+
In the past 7 days being tired made it hard for me to play or go out with my friends as much as I'd like 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 ACHPROMISF1 2A 18+
In the past 7 days I felt weak Ik voelde me zwak./ de afgelopen 7 dagen ACHPROMISF2 2A 18+
In the past 7 days I got tired easily Ik werd gauw moe./ de afgelopen 7 dagen ACHPROMISF3 2A 18+
In the past 7 days being tired made it hard for me to keep up with my schoolwork Ik kon moeilijk bijblijven met mijn werk voor school omdat ik moe was./ de afgelopen 7 dagen ACHPROMISF4 2A 18+
In the past 7 days I had trouble finishing things because I was too tired Ik had moeite om dingen af te maken omdat ik te moe was./ de afgelopen 7 dagen ACHPROMISF5 2A 18+
In the past 7 days I had trouble starting things because I was too tired Ik had moeite om met dingen te beginnen omdat ik te moe was./ de afgelopen 7 dagen ACHPROMISF6 2A 18+
In the past 7 days I was so tired it was hard for me to pay attention Ik was zo moe dat ik moeite had om op te letten./de afgelopen 7 dagen ACHPROMISF7 2A 18+
In the past 7 days I was too tired to do sports or exercise Ik was te moe om te sporten of te bewegen./ de afgelopen 7 dagen ACHPROMISF8 2A 18+
In the past 7 days I was too tired to do things outside Ik was te moe om buiten dingen te doen./ de afgelopen 7 dagen ACHPROMISF9 2A 18+
In the past 7 days I was too tired to enjoy the things I like to do Ik was te moe om te genieten van de dingen die ik leuk vind om te doen./ de afgelopen 7 dagen ACHPROMISF10 2A 18+
In the past 7 days being tired made it hard for my child to play or go out with friends as much as he/she would like 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). CHPROMISF1 2A 18+
In the past 7 days my child felt weak Mijn kind voelde zich zwak (de afgelopen 7 dagen). CHPROMISF2 2A 18+
In the past 7 days my child got tired easily Mijn kind werd gauw moe (de afgelopen 7 dagen). CHPROMISF3 2A 18+
In the past 7 days being tired made it hard for my child to keep up with schoolwork Mijn kind kon moeilijk bijblijven met werk voor school omdat hij/zij moe was (de afgelopen 7 dagen). CHPROMISF4 2A 18+
In the past 7 days my child had trouble finishing things because he/she was too tired Mijn kind had moeite om dingen af te maken omdat hij/zij te moe was (de afgelopen 7 dagen). CHPROMISF5 2A 18+
In the past 7 days my child had trouble starting things because he/she was too tired Mijn kind had moeite om met dingen te beginnen omdat hij/zij te moe was (de afgelopen 7 dagen). CHPROMISF6 2A 18+
In the past 7 days my child was so tired it was hard for him/her to pay attention Mijn kind was zo moe dat hij/zij moeite had om op te letten (de afgelopen 7 dagen). CHPROMISF7 2A 18+
In the past 7 days my child was too tired to do sports or exercise Mijn kind was te moe om te sporten of te bewegen (de afgelopen 7 dagen). CHPROMISF8 2A 18+
In the past 7 days my child was too tired to do things outside Mijn kind was te moe om buiten dingen te doen (de afgelopen 7 dagen). CHPROMISF9 2A 18+
In the past 7 days my child was too tired to enjoy the things he/she likes to do Mijn kind was te moe om te genieten van de dingen die hij/zij leuk vindt om te doen (de afgelopen 7 dagen). CHPROMISF10 2A 18+
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general_health_promis.1571220616.txt.gz · Last modified: 2019/11/07 16:07 (external edit)