Introduction
Methods
Design
Measures
Phase 1: Cross-cultural adaptation
Phase 2: Cross-cultural validation
Participants
Data analysis
Results
Patient characteristics
Poland | UK | |||
---|---|---|---|---|
RA (n = 145) | SSc (n = 133) | RA (n = 125) | SSc (n = 128) | |
Mean age (SD) | 52.79 (13.05) | 53.89 (14.26) | 56.26 (13.24) | 54.44 (12.07) |
Disease duration (SD) | 13.36 (9.84) | 10.84 (10.34) | 13.55 (9.52) | 14.34 (11.49) |
% Female | 82.1 | 88.7 | 79.2 | 79.7 |
% Only basic education | 9.7 | 10.5 |
Adaptation into Polish
Original | Back-translation 1 (BT1) | Back-translation 2 (BT2) | Issues | Agreement |
---|---|---|---|---|
Arthritis Educational Needs Assessment Tool | “Assessment Tools for Educational Needs of Patients with Arthritis” | “A tool for assessing educational needs of patients with arthritis related” | Uncertainty word whether “tools” or “tool” should in be used in Polish version Discussion on the Polish multiple meaning of word “arthritis” Also, there were differences in translation of the term “arthritis” | “Narzędzie do oceny potrzeb edukacyjnych pacjentów związanych z zapaleniem stawów” The chosen term “zapalenie stawów” is the most adequate translation. |
How long have you had your arthritis for? | “How long have you had arthritis?” | “How long have you suffered from arthritis?” | Uncertainty whether word “suffer” is appropriate | “Jak długo choruje Pani/Pan na zapalenie stawów ?” The Polish translation is correct in terms of style. |
Please state your age in years: | “Please state your age” | “Please state your age” | Discussion whether phrase “in years” should be added | “Proszę podać swój wiek.” The phrase “in years” has been omitted. |
How old were you when you left school? | “How old were you when you finished with formal education?” | “How old were you when you finished school education?” | Customary question concerning education in Polish does not require information about age | “Proszę podać swoje wykształcenie.” The most correct Polish phrase has been chosen. |
At this time, do you want education about anything to help you deal with your arthritis? | Would you currently like to receive information which will help you manage your arthritis? | Are you interested in getting information that will help you cope with arthritis? | Uncertainty how to translate into Polish “manage”, “cope with” and “education” | “Czy obecnie chciałaby Pani/Pan zdobyć informacje które pomogą Pani/Panu radzić sobie z zapaleniem stawów?” Polish translation is correct in terms of style and grammar. |
If yes, what? | “If yes, what information would you like to receive?” | “If so, what would you like to know?” | More formally correct version of question in Polish should be given | “Jeśli tak, to czego chciałaby Pani/Pan się dowiedzieć?” Polish version is correct in terms of style. |
In general, how much information do you want about your arthritis? | “In general, how much would you like to know about your rheumatic disease?” | “Generally speaking, how much would you like to know about your rheumatism?” | Discussion on word choice between “rheumatic disease” and “rheumatism” | “Ogólnie rzecz biorąc, jak dużo chciałaby się Pani/Pan dowiedzieć o swojej chorobie reumatycznej?” Polish version applies the term “rheumathic disease” |
How much do you need to know now about each of the following things? Please tick in the column that shows best how you feel: | “How much would you like to know right now about the following issues? Please mark the appropriate column with an ‘X’” | “How much would you/you already know about the following issues? Please place a cross in the appropriate column” | Discussion concerning the phrase “please place a cross in the appropriate column” | “Jak wiele chciałaby Pani/Pan wiedzieć już teraz na temat następujących zagadnień? Proszę o postawienie krzyżyka w odpowiedniej kolumnie.” The most adequate Polish equivalent has been chosen. |
This section relates to managing pain | “Section on managing pain” | “The section on coping with pain” | Discussion whether to choose less or more formal way of introducing a new section of questions | “Sekcja dotycząca radzenie sobie z bólem.” A more formal way of introducing a new section has been chosen. |
How important is it for you to know more about the following: | How important is knowing more about the following issues for you? | How important is it for you/you would know more about the following issues? | Discussion wether choose less or more formal way of asking a question | “Jak ważne jest dla Pani/Pana by wiedzieć więcej o następujących zagadnieniach.” A formal way of asking a question has been chosen. |
Using exercise | “Gymnastic exercise” | “Physical exercises” | Uncertainty whether “gymnastic” and “physical” can be used synonymic | “Ćwiczenia gimnastyczne” Polish version is correct in terms of style. |
This section relates to movement | “Section on issues related to moving around” | “The section on issues related to mobility” | Discussion whether to choose less or more formal way of introducing a new section of questions | “Sekcja dotycząca zagadnień związanych z poruszaniem się.” The most adequate Polish version has been chosen |
Ways to do things which wear my joints less | “Methods of reducing wear of/relieving joints” | “Methods of relieving joints” | English idiomatic expression “wear joints less” was replaced with a Polish idiomatic phrase “oszczędzać satwy” (In English: save) | “Metody oszczędzania/odciążania stawów” |
Ways to deal with moods or depression | “Methods to help manage mood changes or depressive states” | “Ways to cope with moods or periods of depression” | Ambiguous meaning of a term “moods” | “Sponsor radzenia sobie ze zmiennością nastrojów lub stanami depresji.” The chosen term „zmienność nastrojów” means frequent changes in mood |
Why I am feeling down or depressed | “Why do I feel down or depressed?” | “Why do I feel moody or depresses?” | Ambiguous meaning of the term “be depressed” | “Dlaczego czują się przygnębiona/y, czy depresyjna/y” The chosen term „depresyjny” relates to a state of depression. |
How arthritis might affect my children or relatives | “Can the disease have an effect on the lives of my children and close ones?” | “Can the disease affect the lives of my children and family?” | Multiple meaning of word “affect” | “Czy choroba może mieć wpływ na życie moich dzieci i bliskich?” The chosen phrase „wpływ na życie” relates to quality of life |
What might happen in the future | “How will my condition change in the future?” | “How will my condition change in the future?” | The question is open to various interpretations | “Jak mój stan będzie się zmieniał w przyszłości?” The translation focuses on patient’s personal condition in the future |
This section is about treatments you may be receiving from health professionals | “Section on methods of treatment that you can receive from nurses and other medical professionals” | “The section concerns treatments that the patient can receive from nurses and other health care workers” | Lack of a Polish equivalent of a term “health professionals” | “Secant dotycząca sposobów leczenia, które Pani/Pan może otrzymać od pielęgniarki i innych pracowników ochrony zdrowia.” The chosen phrase describes the meaning of “health professionals” |
How an operation might help me | “Can surgery help me?” | “Can surgery help me?” | Uncertainty whether word “surgery” or “operation” should be used | “Czy zabieg chirurgiczny może mi pomóc?” The most adequate Polish term has been chosen. |
What the side effects of my medicines are | “What are adverse side effects of medicines?” | “Are there side effects to the medication?” | Uncertainty whether the question should be more general or relate to condition of the particular patient | “Jakie są działanie niepożądane leków które przyjmuję?” The chosen phrase relates to patient’s condition. |
How appliances might help me (splints, adaptations, collars) | “What devices may help me (orthopaedic collars, splints, stabilizers)?” | “What appliances can help me (e.g. orthopaedic collars, splints, stabilizers)?” | Difficulty with translating term “adaptations” | “Jakie przyrządy i/lub udogodnienia mogą mi pomóc (np. kołnierze ortopedyczne, szyny, specjalnie dostosowane poręcze, etc.)?” A descriptive phrase explaining the term “adaptation” has been chosen |
Foods or vitamins that might help | “Diet or vitamins which may help” | “Diet or vitamins that may help” | Uncertainty whether “foods” relates to “diet” | “Produkty pokarmowe lub witaminy które mogą pomóc” The chosen term “produkty pokarmowe” means foods |
Exercises I should be doing | “Recommended motion exercises” | “Recommended physical exercises” | Uncertainty whether word “recommended” should be used | “Zalecane ćwiczenia” The most adequate Polish translation has been chosen |
How much exercise I should be doing | “Frequency of performing motion exercises” | “The frequency of physical exercises” | Uncertainty whether the word “frequency” is adequate | “Częstotliwość wykonywania ćwiczeń ruchowych” The chosen term “częstotliwość” means frequency |
Times when I should call the doctor or nurse | “Situations when I should contact a doctor or nurse” | “In what situations, should I consult a doctor or nurse?” | Uncertainty whether “situations” is the correct translation of the word “times” | “Sytuacje w których powinnam/nienem skontaktować się z lekarzem lub pielęgniarką?” Polish translation is correct in terms of grammar and style |
Organizations I can get in touch with about arthritis | “Organizations which can help patients with rheumatic diseases?” | “Organizations that can help patients with rheumatic diseases” | Ambiguous meaning of term “organization” also there is an ambiguous meaning of idiomatic expression “get in touch with.” | “Stowarzyszenia które mogą pomóc pacjentom z chorobami reumatycznymi.” Polish phrase describing contacting an organist has been chosen |
Who I can ask about financial help | “Who can I ask for financial help?” | “Who can I ask about financial assistance?” | Lack of cultural equivalence (it is not possible to ask for financial help in case of suffering from arthritis) | “Kogo mogę poprosić o pomoc finansową?” |
Where I can find groups who will help me to cope with arthritis | “Where can I find support groups for people with rheumatic diseases?” | “Where can I find support groups for people with rheumatic diseases?” | Uncertainty whether “groups” means the same as “support groups” | “Gdzie mogę znaleźć grupy wsparcia dla osób z chorobami reumatycznymi ?” The term related to help groups has been used |
How I can get the most out of seeing the doctor or nurse | “How can I improve communication with doctors or nurses to maximize effectiveness?” | “How to make more effective contacts with a doctor or nurse?” | Idiomatic expression “get the most out of” can be translated in various ways in Polish | “Jakeeeeeee sprawić by kontakty z lekarzem lub pielęgniarką były najbardziej efektywne?” The word “efektywne” (in English: effective) has been used |
Cross-cultural validation phase
Items | RA | SSc | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Loc | SE | FR | DF | χ2
| *P
| Loc | SE | FR | DF | χ2
| *P
| ||
Pain | 1 | −1.09 | 0.12 | 0.45 | 130.49 | 0.13 | 0.94 | −0.84 | 0.11 | −0.47 | 122.69 | 1.43 | 0.49 |
2 | −0.01 | 0.10 | 1.15 | 130.49 | 0.79 | 0.67 | −0.13 | 0.09 | 0.64 | 122.69 | 1.04 | 0.59 | |
3 | −0.20 | 0.10 | 0.80 | 130.49 | 3.66 | 0.16 | 0.10 | 0.09 | −0.07 | 122.69 | 4.11 | 0.13 | |
4 | 0.20 | 0.10 | 1.66 | 130.49 | 5.19 | 0.07 | −0.03 | 0.09 | 1.00 | 122.69 | 0.64 | 0.73 | |
5 | −0.17 | 0.10 | 0.44 | 130.49 | 1.21 | 0.54 | −0.21 | 0.09 | 1.64 | 122.69 | 7.99 | 0.02 | |
6 | 0.13 | 0.09 | 3.58 | 130.49 | 4.27 | 0.12 | 0.02 | 0.09 | 2.71 | 122.69 | 12.27 |
0.00
| |
Movement | 7 | 0.71 | 0.10 | 4.86 | 130.49 | 30.85 |
0.00
| 0.65 | 0.08 | 2.13 | 122.69 | 2.81 | 0.25 |
8 | 0.76 | 0.10 | 1.71 | 130.49 | 8.48 | 0.01 | 0.57 | 0.08 | 1.09 | 122.69 | 1.41 | 0.50 | |
9 | 0.22 | 0.10 | 2.47 | 130.49 | 6.17 | 0.05 | 0.49 | 0.09 | 0.92 | 122.69 | 0.08 | 0.96 | |
10 | 0.16 | 0.10 | 0.97 | 130.49 | 1.29 | 0.52 | 0.15 | 0.09 | −0.18 | 122.69 | 0.40 | 0.82 | |
11 | −0.76 | 0.12 | −1.02 | 130.49 | 2.86 | 0.24 | −0.08 | 0.08 | −0.28 | 122.69 | 0.04 | 0.98 | |
Feelings | 12 | −0.06 | 0.10 | −0.33 | 130.49 | 2.86 | 0.24 | 0.09 | 0.09 | 0.13 | 122.69 | 0.65 | 0.72 |
13 | 0.31 | 0.10 | 0.03 | 130.49 | 1.87 | 0.39 | 0.17 | 0.08 | 1.80 | 122.69 | 0.61 | 0.74 | |
14 | 0.10 | 0.10 | −0.92 | 130.49 | 0.59 | 0.74 | 0.09 | 0.09 | 0.11 | 122.69 | 0.68 | 0.71 | |
15 | 0.41 | 0.09 | 0.59 | 130.49 | 0.93 | 0.63 | 0.36 | 0.08 | 1.66 | 122.69 | 0.32 | 0.85 | |
Disease | 16 | −0.27 | 0.09 | 3.91 | 130.49 | 8.56 | 0.01 | −0.33 | 0.09 | 1.68 | 122.69 | 2.42 | 0.30 |
17 | 0.18 | 0.09 | 0.07 | 130.49 | 0.11 | 0.95 | 0.17 | 0.08 | 0.59 | 122.69 | 0.64 | 0.73 | |
18 | −0.32 | 0.09 | −0.02 | 130.49 | 3.01 | 0.22 | −0.32 | 0.08 | 1.54 | 122.69 | 0.15 | 0.93 | |
19 | −0.90 | 0.11 | −0.82 | 130.49 | 1.36 | 0.51 | −0.28 | 0.08 | 0.67 | 122.69 | 0.56 | 0.75 | |
20 | −0.27 | 0.10 | −2.07 | 130.49 | 2.37 | 0.31 | −0.11 | 0.08 | −1.10 | 122.69 | 2.63 | 0.27 | |
21 | 0.21 | 0.09 | 0.62 | 130.49 | 0.64 | 0.73 | 0.00 | 0.09 | −1.45 | 122.69 | 6.23 | 0.04 | |
22 | −0.59 | 0.10 | −0.19 | 130.49 | 0.38 | 0.83 | −0.58 | 0.09 | −0.53 | 122.69 | 1.83 | 0.40 | |
Treatments | 23 | 0.27 | 0.09 | −0.57 | 130.49 | 4.65 | 0.10 | 0.09 | 0.09 | 0.81 | 122.69 | 0.93 | 0.63 |
24 | −0.01 | 0.09 | −0.39 | 130.49 | 1.95 | 0.38 | 0.06 | 0.08 | −0.08 | 122.69 | 0.74 | 0.69 | |
25 | −0.42 | 0.09 | −2.26 | 130.49 | 6.29 | 0.04 | −0.21 | 0.09 | 0.93 | 122.69 | 2.26 | 0.32 | |
26 | 0.22 | 0.09 | −1.76 | 130.49 | 1.84 | 0.40 | 0.05 | 0.09 | −0.17 | 122.69 | 0.42 | 0.81 | |
27 | 0.17 | 0.09 | −1.77 | 130.49 | 1.18 | 0.56 | −0.01 | 0.09 | −0.53 | 122.69 | 1.83 | 0.40 | |
28 | 0.11 | 0.09 | 1.67 | 130.49 | 0.40 | 0.82 | 0.45 | 0.08 | 0.50 | 122.69 | 3.43 | 0.18 | |
29 | 0.21 | 0.09 | 3.10 | 130.49 | 2.10 | 0.35 | 0.55 | 0.08 | −0.04 | 122.69 | 0.25 | 0.88 | |
Self-help | 30 | 0.32 | 0.10 | 1.80 | 130.49 | 1.59 | 0.45 | 0.19 | 0.09 | 3.02 | 122.69 | 9.87 | 0.01 |
31 | −0.28 | 0.10 | −1.09 | 130.49 | 0.92 | 0.63 | −0.33 | 0.10 | 0.48 | 122.69 | 0.16 | 0.92 | |
32 | −0.25 | 0.10 | −2.06 | 130.49 | 7.26 | 0.03 | −0.46 | 0.10 | −1.18 | 122.69 | 6.68 | 0.04 | |
33 | −0.42 | 0.10 | −1.93 | 130.49 | 8.24 | 0.02 | −0.34 | 0.10 | −1.17 | 122.69 | 6.02 | 0.05 | |
34 | −0.19 | 0.10 | −2.30 | 130.49 | 8.88 | 0.01 | −0.24 | 0.10 | −0.89 | 122.69 | 8.40 | 0.02 | |
35 | 0.05 | 0.09 | −2.23 | 130.49 | 2.50 | 0.29 | −0.27 | 0.09 | −2.01 | 122.69 | 9.19 | 0.01 | |
Support | 36 | 0.28 | 0.10 | 0.88 | 130.49 | 2.48 | 0.29 | 0.07 | 0.09 | 0.54 | 122.69 | 0.83 | 0.66 |
37 | 0.42 | 0.09 | −0.34 | 130.49 | 3.94 | 0.14 | 0.29 | 0.09 | 0.68 | 122.69 | 0.02 | 0.99 | |
38 | 0.57 | 0.10 | −1.28 | 130.49 | 4.53 | 0.10 | 0.33 | 0.09 | −0.01 | 122.69 | 0.74 | 0.69 | |
39 | 0.19 | 0.09 | −1.90 | 130.49 | 4.95 | 0.08 | −0.16 | 0.09 | −0.98 | 122.69 | 3.85 | 0.15 | |
Testlets
| |||||||||||||
Pain | −0.12 | 0.03 | 2.45 | 114.43 | 3.28 | 0.19 | −0.09 | 0.02 | 0.02 | 107.57 | 0.61 | 0.74 | |
Movements | 0.11 | 0.03 | 1.20 | 114.43 | 1.88 | 0.39 | 0.12 | 0.02 | 1.47 | 107.57 | 0.58 | 0.75 | |
Feelings | 0.04 | 0.03 | 0.27 | 114.43 | 1.23 | 0.54 | 0.04 | 0.03 | 1.78 | 107.57 | 0.41 | 0.82 | |
Disease | −0.12 | 0.02 | −0.36 | 114.43 | 0.26 | 0.88 | −0.11 | 0.02 | 0.14 | 107.57 | 0.84 | 0.66 | |
Treatments | 0.00 | 0.02 | −0.41 | 114.43 | 2.81 | 0.25 | 0.09 | 0.02 | 1.06 | 107.57 | 0.62 | 0.73 | |
Self-help | −0.07 | 0.03 | −2.60 | 114.43 | 4.33 | 0.11 | −0.08 | 0.02 | −0.29 | 107.57 | 1.64 | 0.44 | |
Support | 0.15 | 0.03 | −0.55 | 114.43 | 3.18 | 0.20 | 0.04 | 0.03 | −0.40 | 107.57 | 3.44 | 0.18 |
Disease group | Country | Analyses | Item fit residual | Person fit residual | Chi-square interaction | PSI | Independent t tests (95 % CI) | |||
---|---|---|---|---|---|---|---|---|---|---|
Mean | SD | Mean | SD | Value (df) |
p
| |||||
SSc | Poland | Analysis 1 | 0.362 | 1.142 | −0.411 | 2.312 | 104.562 (78) | 0.024 | 0.947 | |
Analysis 2 | 0.540 | 0.883 | −0.329 | 1.233 | 8.132 (14) | 0.882 | 0.855 | 0.046 (0.008, 0.083) | ||
UK | Analysis 1 | 0.319 | 1.524 | −0.330 | 2.105 | 54.951 (39) | 0.047 | 0.933 | ||
Analysis 2 | 0.391 | 0.723 | −0.336 | 1.166 | 7.439 (7) | 0.385 | 0.816 | 0.056 (0.018, 0.094) | ||
Pooled | Analysis 1 | 0.434 | 1.913 | −0.441 | 2.302 | 226.122 (156) | <0.001 | 0.940 | ||
Analysis 2 | 0.567 | 0.598 | −0.368 | 1.220 | 24.189 (28) | 0.672 | 0.829 | 0.056 (0.029, 0.084) | ||
DIF-adjusted | 0.520 | 0.559 | −0.356 | 1.218 | 33.259 (32) | 0.406 | 0.838 | |||
RA | Poland | Analysis 1 | 0.142 | 1.826 | −0.556 | 2.429 | 151.258 (78) | <0.001 | 0.959 | |
Analysis 2 | 0.000 | 1.573 | −0.428 | 1.213 | 16.953 (14) | 0.259 | 0.894 | 0.069 (0.034, 0.105) | ||
UK | Analysis 1 | 0.288 | 1.868 | −0.250 | 2.133 | 101.958 (39) | <0.001 | 0.932 | ||
Analysis 2 | 0.236 | 0.953 | −3.955 | 1.290 | 6.392 (7) | 0.495 | 0.857 | 0.069 (0.046, 0.143) | ||
Pooled | Analysis 1 | 0.041 | 2.637 | −0.450 | 2.455 | 345.946 (117) | <0.001 | 0.954 | ||
Analysis 2 | −0.003 | 1.646 | −0.440 | 1.258 | 28.143 (21) | 0.136 | 0.885 | 0.067 (0.041, 0.093) | ||
DIF-adjusted | 0.163 | 1.151 | −0.441 | 1.273 | 28.971 (33) | 0.668 | 0.890 | |||
Requirements for perfect fit | 0 | 1 | 0 | 1 | >0.05 | >0.7 | Lower-bound 95 % CI < 0.05 |