Multidimensional Assessment of Individuals with Parkinson’s Disease: Development and Structure Validation of a Self-Assessment Questionnaire
Abstract
:1. Introduction
2. Materials and Methods
2.1. Questionnaire Development
- Section A—Research presentation. This section presents the aims of the research, describes the risks and benefits, as well as the importance of the participation of people with PD.
- Section B—Questions about daily activities (Module 1), related to self-care and the capacity of individuals to live independently; and questions concerning cognitive aspects (Module 2), related to the individuals’ feelings about life and society. This section presents 66 questions for evaluation by the respondents, of which 43 are distributed to the subgroups of Module 1 (7 for Food, 12 for Mobility, 7 for Sanitation, 7 for Clothes and 10 for Miscellaneous), and 23 distributed to the subgroups of Module 2 (2 for Memory/Concentration, 6 for Social and family conviviality, 3 for Personality, 6 for Energy and 6 for Emotion/Humor).
- Section C—Multidimensional Pain Inventory. This section presents four subgroups of questions taken from the MPI (Portuguese version) [15], which refer to the impact of pain on the life of individuals. In this section there are 17 questions for assessment by the respondent, of which 3 are for the subgroup Severity of pain, 9 for Interference, 2 for Perceived life control, and 3 for State of mood-affectivity.
2.2. Questionnaire’s Structure Validation
2.2.1. Research Participants
2.2.2. Factor Analysis
2.3. Data Analysis
2.3.1. Assessment of Respondents’ Level of Impairment
2.3.2. Scale Accuracy Assessment
2.3.3. Identification of Motor Difficulties and Limitations Related to Cognition and Pain
3. Results
3.1. Questionnaire Structure’s Validation
- FACTOR 1: Comprised of 43 variables related to the activities of daily living (ADL).
- FACTOR 2: Comprised of 14 variables related to pain.
- FACTOR 3: Comprised of 14 variables related to cognitive aspects.
3.2. Assessment of Respondents’ Level of Impairment
3.3. Scale Accuracy Assessment
3.4. Identification of Motor Difficulties and Limitations Related to Cognition and Pain
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
Appendix A. Multidimensional Assessment Questionnaire of Individuals with Parkinson’s Disease
Section A—Presentation of the Survey and Sample Description |
I declare that I have Parkinson’s disease and that I am able to answer the questionnaire. * |
( ) Yes |
( ) No |
I was diagnosed with Parkinson’s disease about: * |
( ) Less than 2 years |
( ) 2 to 4 years |
( ) 4 to 6 years |
( ) 6 to 8 years |
( ) 8 to 10 years |
( ) More than 10 years |
The symbol * indicates that the participant must answer the question. |
Section B—Individual Perception about Parkinson’s Disease |
The following statements refer to some aspects of your daily life. Please indicate how much you agree or disagree with each statement. To do this, please answer with one of the five rating levels below: |
0—Totally disagree |
1—Disagree |
2—Indifferent |
3—Agree |
4—Totally Agree |
MODULE 1—Activities of daily living (ADL) |
This module refers to activities of daily living, that is, tasks related to self-care and your ability to live independently. |
Food |
(1) I hold the flatware without assistance. |
(2) I handle the flatware without assistance. |
(3) I take the flatware with the food up to my mouth without help and without spilling it. |
(4) I chew the food without difficulty. |
(5) I have no difficulty swallowing food. |
(6) I serve liquid drinks without help and without spilling. |
(7) I drink liquids without help and without spilling. |
Mobility |
(8) I walk short distances without help. |
(9) I walk long distances without help. |
(10) I lie in bed without help. |
(11) I get up from bed without help. |
(12) I sit without help. |
(13) I drive without difficulty. |
(14) I climb stairs without help. |
(15) I go down stairs without help. |
(16) I dance without difficulty. |
(17) I turn to bed at night without help. |
(18) I get up from the car seat without help. |
(19) I have balance when walking. |
Sanitation |
(20) I turn on the shower without help. |
(21) I wash my body without help. |
(22) I dry myself with the towel without help. |
(23) I sit on the toilet without help. |
(24) I get up from the toilet without help. |
(25) I clean myself after evacuating without help. |
(26) I brush my teeth without help. |
Clothes |
(27) I wear a pant/skirt without help. |
(28) I wear a shirt/blouse without help. |
(29) I button my clothes without help. |
(30) I open/close the zipper of my clothes without help. |
(31) I put on my shoes without help. |
(32) I tie the shoelaces without help. |
(33) I take off my clothes to shower without help. |
Miscellaneous |
(34) I take my medicines without help. |
(35) I make phone calls without help. |
(36) I type messages on my cell phone without help. |
(37) I write on a sheet of paper without help. |
(38) I comb my hair without help. |
(39) I use the television remote control without assistance. |
(40) I hold a child in my arms without help. |
(41) I speak clearly and without difficulty. |
(42) I use Gillette without cutting myself. |
(43) I read texts without help. |
Is there any other activity in your daily life that you have a lot of difficulty or desire to do that has not been mentioned in this questionnaire? |
MODULE 2—Cognitive aspects |
This module refers to the cognitive aspects, that is, your feelings about life and society. |
Memory/Concentration |
(44) I concentrate to accomplish the tasks. |
(45) I remember things without having to write them down. |
Social and family conviviality |
(46) I feel close and welcomed by other people. |
(47) I am calm with other people. |
(48) My physical condition does not interfere with my social life. |
(49) I go out as often as I would like. |
(50) I dedicate time to my hobbies and leisure as much as I would like. |
(51) I meet my friends as much as I would like. |
Personality |
(52) I feel interested in food. |
(53) I feel calm/peaceful. |
(54) My personality has not changed. |
Energy |
(55) I feel rested most of the time. |
(56) I am willing to do the things I want. |
(57) I do not feel nausea during the day. |
(58) I do not have hallucinations and delusions often. |
(59) I do not get much sleep during the day. |
(60) I do not get dizzy when I am lying/sitting and getting up. |
Emotion/Humor |
(61) I have confidence in myself. |
(62) I often feel happy. |
(63) I often feel peaceful. |
(64) I feel excited about my future. |
(65) I have no desire to be alone. |
(66) I sleep and do not wake up many times during the night. |
Is there any other aspect that affects you mentally/psychologically that has not been mentioned in this questionnaire? |
Section C—Multidimensional Pain Inventory—MPI |
The following statements refer to the impact of pain on your life. Please indicate how much you agree or disagree with each one. To do this, answer with one of the seven levels, ranging from 1 (a little) to 7 (a lot). They are classified progressively, that is, level 1 is the lowest, followed by level 2 and so on, up to level 7, which represents the highest value of the scale. |
Did you feel pain in the last week? * |
( ) Yes |
( ) No |
* If the answer is yes, the participant will answer the MPI. The participant will be instructed to assign only one score on a LIKERT scale ranging from 1 (a little) to 7 (a lot). |
Severity of pain |
(67) On average, how severe has your pain been during the last week? |
(68) How much suffering do you experience because of your pain? |
(69) Estimate the level of your pain at this time. |
Interference |
(70) In general, how much does your pain interfere with your daily activities? |
(71) From the moment your pain began, how much did your pain change your ability to work? |
(72) How much did your pain change the amount of satisfaction or pleasure from your participation in social and leisure activities? |
(73) How much did your pain change the amount of satisfaction or pleasure from your participation in family related activities? |
(74) How much did your pain affect your relationship with your wife, family, or close people? |
(75) How much did your pain change the amount of satisfaction or pleasure from your participation in job? |
(76) How much did your pain affect your ability to do housework? |
(77) How much did your pain change or interfere with your friendship with people other than your family? |
(78) In general, how much did your pain affect your ability to participate in social activities? |
Perceived life control |
(79) During the last week, how much control did you feel you had over your life? |
(80) During the last week, how much did you feel you were able to deal with everyday problems? |
State of mood-affectivity |
(81) Estimate your mood globally during the last week. |
(82) During the last week, how irritable have you been? |
(83) During the last week, how tense or anxious have you been? |
Appendix B. Validated Questionnaire—Multidimensional Assessment Questionnaire of Individuals with Parkinson’s Disease
Section A—Presentation of the Survey and Sample Description |
I declare that I have Parkinson’s disease and that I am able to answer the questionnaire. * |
( ) Yes |
( ) No |
I was diagnosed with Parkinson’s disease about: * |
( ) Less than 2 years |
( ) 2 to 4 years |
( ) 4 to 6 years |
( ) 6 to 8 years |
( ) 8 to 10 years |
( ) More than 10 years |
The symbol * indicates that the participant must answer the question. |
Section B—Individual Perception about Parkinson’s Disease |
The following statements refer to some aspects of your daily life. Please indicate how much you agree or disagree with each statement. To do this, please answer with one of the five rating levels below: |
0—Totally disagree |
1—Disagree |
2—Indifferent |
3—Agree |
4—Totally Agree |
MODULE 1—Activities of daily living (ADL) |
This module refers to activities of daily living, that is, tasks related to self-care and your ability to live independently. |
(1) I hold the flatware without assistance. |
(2) I handle the flatware without assistance. |
(3) I take the flatware with the food up to my mouth without help and without spilling it. |
(4) I chew the food without difficulty. |
(5) I have no difficulty swallowing food. |
(6) I serve liquid drinks without help and without spilling. |
(7) I drink liquids without help and without spilling. |
(8) I walk short distances without help. |
(9) I walk long distances without help. |
(10) I lie in bed without help. |
(11) I get up from bed without help. |
(12) I sit without help. |
(13) I drive without difficulty. |
(14) I climb stairs without help. |
(15) I go down stairs without help. |
(16) I dance without difficulty. |
(17) I turn to bed at night without help. |
(18) I get up from the car seat without help. |
(19) I have balance when walking. |
(20) I turn on the shower without help. |
(21) I wash my body without help. |
(22) I dry myself with the towel without help. |
(23) I sit on the toilet without help. |
(24) I get up from the toilet without help. |
(25) I clean myself after evacuating without help. |
(26) I brush my teeth without help. |
(27) I wear a pant/skirt without help. |
(28) I wear a shirt/blouse without help. |
(29) I button my clothes without help. |
(30) I open/close the zipper of my clothes without help. |
(31) I put on my shoes without help. |
(32) I tie the shoelaces without help. |
(33) I take off my clothes to shower without help. |
(34) I take my medicines without help. |
(35) I make phone calls without help. |
(36) I type messages on my cell phone without help. |
(37) I write on a sheet of paper without help. |
(38) I comb my hair without help. |
(39) I use the television remote control without assistance. |
(40) I hold a child in my arms without help. |
(41) I speak clearly and without difficulty. |
(42) I use Gillette without cutting myself. |
(43) I read texts without help. |
Is there any other activity in your daily life that you have a lot of difficulty or desire to do that has not been mentioned in this questionnaire? |
MODULE 2—Cognitive aspects |
This module refers to the cognitive aspects, that is, your feelings about life and society. |
(46) I feel close and welcomed by other people. |
(47) I am calm with other people. |
(48) My physical condition does not interfere with my social life. |
(49) I go out as often as I would like. |
(50) I dedicate time to my hobbies and leisure as much as I would like. |
(51) I meet my friends as much as I would like. |
(53) I feel calm/peaceful. |
(54) My personality has not changed. |
(55) I feel rested most of the time. |
(56) I am willing to do the things I want. |
(61) I have confidence in myself. |
(62) I often feel happy. |
(63) I often feel peaceful. |
(64) I feel excited about my future. |
Is there any other aspect that affects you mentally/psychologically that has not been mentioned in this questionnaire? |
Section C—Multidimensional Pain Inventory—MPI |
The following statements refer to the impact of pain on your life. Please indicate how much you agree or disagree with each one. To do this, answer with one of the seven levels, ranging from 1 (a little) to 7 (a lot). They are classified progressively, that is, level 1 is the lowest, followed by level 2 and so on, up to level 7, which represents the highest value of the scale. |
Did you feel pain in the last week? * |
( ) Yes |
( ) No |
* If the answer is yes, the participant will answer the MPI. The participant will be instructed to assign only one score on a LIKERT scale ranging from 1 (a little) to 7 (a lot). |
(67) On average, how severe has your pain been during the last week? |
(68) How much suffering do you experience because of your pain? |
(69) Estimate the level of your pain at this time. |
(70) In general, how much does your pain interfere with your daily activities? |
(71) From the moment your pain began, how much did your pain change your ability to work? |
(72) How much did your pain change the amount of satisfaction or pleasure from your participation in social and leisure activities? |
(73) How much did your pain change the amount of satisfaction or pleasure from your participation in family related activities? |
(74) How much did your pain affect your relationship with your wife, family, or close people? |
(75) How much did your pain change the amount of satisfaction or pleasure from your participation in job? |
(76) How much did your pain affect your ability to do housework? |
(77) How much did your pain change or interfere with your friendship with people other than your family? |
(78) In general, how much did your pain affect your ability to participate in social activities? |
(82) During the last week, how irritable have you been? |
(83) During the last week, how tense or anxious have you been? |
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Diagnosis Time | Number of Respondents | Percentage of Respondents (%) |
---|---|---|
less than 2 years | 59 | 19.54 |
2 to 4 years | 13 | 4.30 |
4 to 6 years | 51 | 16.89 |
6 to 8 years | 64 | 21.19 |
8 to 10 years | 29 | 9.60 |
more than 10 years | 86 | 28.48 |
Variable | Factor Loadings | Variable | Factor Loadings | Variable | Factor Loadings | Variable | Factor Loadings |
---|---|---|---|---|---|---|---|
Q1 | 0.57 | Q19 | 0.57 | Q37 | 0.59 | Q62 | 0.72 |
Q2 | 0.63 | Q20 | 0.91 | Q38 | 0.80 | Q63 | 0.79 |
Q3 | 0.60 | Q21 | 0.91 | Q39 | 0.78 | Q64 | 0.72 |
Q4 | 0.57 | Q22 | 0.92 | Q40 | 0.65 | Q67 | 0.84 |
Q5 | 0.50 | Q23 | 0.94 | Q41 | 0.55 | Q68 | 0.85 |
Q6 | 0.57 | Q24 | 0.91 | Q42 | 0.65 | Q69 | 0.75 |
Q7 | 0.59 | Q25 | 0.92 | Q43 | 0.62 | Q70 | 0.92 |
Q8 | 0.71 | Q26 | 0.87 | Q46 | 0.48 | Q71 | 0.93 |
Q9 | 0.65 | Q27 | 0.88 | Q47 | 0.60 | Q72 | 0.94 |
Q10 | 0.84 | Q28 | 0.89 | Q48 | 0.60 | Q73 | 0.93 |
Q11 | 0.83 | Q29 | 0.82 | Q49 | 0.56 | Q74 | 0.89 |
Q12 | 0.84 | Q30 | 0.88 | Q50 | 0.66 | Q75 | 0.92 |
Q13 | 0.50 | Q31 | 0.87 | Q51 | 0.60 | Q76 | 0.91 |
Q14 | 0.67 | Q32 | 0.84 | Q53 | 0.69 | Q77 | 0.80 |
Q15 | 0.68 | Q33 | 0.91 | Q54 | 0.55 | Q78 | 0.90 |
Q16 | 0.60 | Q34 | 0.80 | Q55 | 0.55 | Q82 | 0.61 |
Q17 | 0.76 | Q35 | 0.70 | Q56 | 0.61 | Q83 | 0.64 |
Q18 | 0.80 | Q36 | 0.63 | Q61 | 0.69 |
Domain | Mean (Sd) | Median | Min–Max |
---|---|---|---|
Entire MAQPD (range: 0–209.36) | 128.25 (43.60) | 130.78 | 7.31–206.36 |
ADL (range: 0–126.84) | 86.21 (32.91) | 90.91 | 0–126.84 |
Cognition (range: 0–35.24) | 16.16 (8.25) | 15.57 | 0–35.24 |
Pain (range: 0–47.28) | 25.87 (15.03) | 25.71 | 0–47.28 |
Domain | Floor Effect (%) | Ceiling Effect (%) | Cronbach’s Alpha |
---|---|---|---|
Entire MAQPD | 0.28 | 3.77 | 0.9767 |
ADL | 0.44 | 10.85 | 0.9839 |
Cognition | 2.50 | 1.04 | 0.9270 |
Pain | 4.32 | 8.2 | 0.9736 |
Diagnosis Time | Main Limitations—Question (Score) * | ||
---|---|---|---|
ADL | Cognition | Pain | |
Less than 2 years | Difficulty in dancing—Q16 (0) | Lack of social interaction and leisure —Q48 (1), Q49 (1), Q50 (1), Q51 (1) Mood changes—Q53 (1), Q54 (1) Lack of disposition—Q55 (1) Lack of happiness and future prospects—Q61 (1), Q62 (1), Q64 (1) | none |
2 to 4 years | none | Mood changes—Q54 (1) Lack of disposition—Q55 (1) Lack of future prospects—Q64 (1) | Experiencing severe chronic pain—Q67 (1), Q68 (1) Interference of pain in different aspects of life (e.g., participation in social and leisure activities, ability to do housework)—Q70 (1), Q71 (1), Q72 (1), Q73 (1), Q75 (1) Mood changes—Q82 (1), Q83 (1) |
4 to 6 years | Difficulty in driving—Q13 (0) | Lack of social interaction—Q51 (0) | none |
6 to 8 years | Difficulty in driving—Q13 (0) Difficulty in dancing—Q16 (0) | Lack of social interaction—Q49 (0), Q51 (0) | Experiencing severe chronic pain—Q67 (1), Q68 (1) Interference of pain in different aspects of life (e.g., participation in social and leisure activities, ability to do housework)—Q70 (1), Q71 (1), Q72 (1), Q73 (1), Q75 (1), Q76 (1) Mood changes—Q83 (1) |
8 to 10 years | Difficulty in walking—Q9 (1), Q19 (1) Difficulty in dressing oneself (loss of independence)—Q28 (1) Difficulty in holding a child—Q40 (1) | Lack of social interaction and leisure—Q48 (1), Q49 (1), Q50 (1), Q51 (1) Mood changes—Q53 (1), Q54 (1) Lack of disposition—Q55 (1), Q56 (1) Lack of future prospects—Q64 (1) | Experiencing severe chronic pain—Q67 (1), Q68 (1), Q69 (1) Mood changes—Q83 (1) |
More than 10 years | Difficulty in driving—Q13 (0) Difficulty in dancing—Q16 (0) | Lack of social interaction and leisure—Q48 (1), Q49 (1), Q50 (1), Q51 (1) Mood changes—Q53 (1) Lack of disposition—Q55 (1), Q56 (1) Lack of happiness and future prospects—Q61 (1), Q64 (1) | Interference of pain in different aspects of life (e.g., participation in job, ability to do housework)—Q75 (0), Q76 (0) |
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Mendes, L.C.; Marques, I.A.; Alves, C.M.; Vieira, M.F.; Júnior, E.A.L.; Pereira, A.A.; Naves, E.L.M.; Oliveira, F.H.M.; Bourhis, G.; Pino, P.; et al. Multidimensional Assessment of Individuals with Parkinson’s Disease: Development and Structure Validation of a Self-Assessment Questionnaire. Healthcare 2022, 10, 1823. https://doi.org/10.3390/healthcare10101823
Mendes LC, Marques IA, Alves CM, Vieira MF, Júnior EAL, Pereira AA, Naves ELM, Oliveira FHM, Bourhis G, Pino P, et al. Multidimensional Assessment of Individuals with Parkinson’s Disease: Development and Structure Validation of a Self-Assessment Questionnaire. Healthcare. 2022; 10(10):1823. https://doi.org/10.3390/healthcare10101823
Chicago/Turabian StyleMendes, Luanne Cardoso, Isabela Alves Marques, Camille Marques Alves, Marcus Fraga Vieira, Edgard Afonso Lamounier Júnior, Adriano Alves Pereira, Eduardo Lázaro Martins Naves, Fábio Henrique Monteiro Oliveira, Guy Bourhis, Pierre Pino, and et al. 2022. "Multidimensional Assessment of Individuals with Parkinson’s Disease: Development and Structure Validation of a Self-Assessment Questionnaire" Healthcare 10, no. 10: 1823. https://doi.org/10.3390/healthcare10101823