How Loan Bank of Assistive Technology Impacts on Life of Persons with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases: A Collaborative Initiative
2. Materials and Methods
2.3. Variables and Instrument Measures
- Specific questionnaire: To collect the main sociodemographic data, a simple questionnaire was created to be applied among the participants. The variables recorded through this questionnaire were: Age, gender, city of residence, context of residence (urban, semi-rural or rural), type of AT, reason for applying for the loan of an assistive device, and who has applied for the AT (person with ALS or NMD, caregiver, or professional). The participant also marked if the device was returned or whether he/she was still using it.
- Psychosocial Impact of Assistive Technology Scale (PIADS): The PIADS was developed to address the need for QoL-related outcome indicators relevant to the use of AT. It has been used to assess the impact of a variety of ATs in various populations [20,21,22,23,24]. It is a self-report questionnaire that assesses the effects of having access to an AT on functional independence, well-being, and QoL . It consists of 26 items grouped into the following three subscales: Competence (12), adaptability (6), and self-esteem (8). The scale captures both positive and negative effects using a scale with ranges from −3 (maximal negative impact) to +3 (maximal positive impact); no effect is scored 0. The validity, reliability, and sensitivity of the PIADS have been described in several publications as being good to excellent [21,25], and a Spanish version is available . Additionally, several studies have shown that the PIADS can be answered by the caregiver .
- Matching Person and Technology (MPT) tool: The MPT tool is a model based on the factors of person, milieu, and technology, and it considers important aspects of these domains in the assessment through a process divided into several steps in a user-focused assessment of AT. The domains of the MPT tool are important factors to consider for anybody waiting to receive any assistive device. So, the implementation of models, such as the MPT tool, will contribute to improving the quality of AT services. “The MPT is a set of questionnaires developed to identify the AT that best suits the user’s goals and preferences, technology features, and environmental support” . In the case of this study, authors selected one of those questionnaires. So, the Assistive Technology Device Predisposition Assessment (ATD PA) device form was applied. This assessment may be completed for one AT being considered or for several competing devices, and it has been designed to assess the level of matching between the person and AT used in different contexts and activities. This part of the questionnaire (device form) asks for the consumer’s views of competing choices, a rating on the consumer’s satisfaction, and various other important issues, which have proved to be vital information. The ATD PA was useful as a follow-up assessment in deciding where to help the consumer be more successful. It has 12 items, and each of them can be scored through a Likert scale from 1 (never) to 5 (always). The total score is calculated with the sum and the mean of the score for individual items . The MPT instruments have been shown to have very good reliability and validity, and it has been validated for use in Spain [30,31].
2.5. Data Analysis
2.6. Ethical Concerns
- The functional problems that AT intends to solve.
- The characteristics of final users and their needs and priorities.
- The characteristics of the device that are responsible for its intervention.
- The context in which AT is applied or used.
- The expected changes in the state of a user and its context are the results, both short and long term.
- The impact of AT devices on the individual’s participation in the environment.
Limitations of the Study
- The impact of the device loaned from the bank of AT of a regional NGO on the lives of people with rare neurodegenerative diseases (ALS and NMDs) is positive, although moderate.
- The main factor that influences that impact is the correct match between person and technology. The matching between the person with ALS or NMDs and her/his loaned device was moderately high. So, the correct prescription done by an experienced professional is vital to achieving this match.
- The type of loaned device and diagnosis can act as a possible moderator for the positive impact of AT on the lives of people with rare neurodegenerative diseases. These aspects have to be taken into account in the process of prescription to get the maximum benefit and utility for the affected person and his/her family.
- The results of the research noted the importance of assessing the needs, demands, and contexts of people with rare neurodegenerative diseases to prescribe the best AT and to get a high and positive impact of the device on the life of the user.
- The OT is one of the main professionals with adequate competences to assess and to offer support in the process of prescribing and providing the assistive devices that people with ALS or NMDs may need.
- Loan banks of AT have to be considered a valid service that complements their lack in public health services. The specialization of these banks according to the characteristics of the end-users is essential to guarantee the correct prescription of the device and to get high rates of efficiency.
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Type of rare disease|
|Amyotrophic lateral sclerosis (ALS)||23||82.10%|
|Neuromuscular disease (NMD)||5||17.90%|
|Type of AT|
|The device was applied by|
|The device was returned|
|The survey was completed by|
|The person without help||10||35.70%|
|The person with the help of a caregiver||3||10.70%|
|Independent Variable||General Results (n = 28)||The Survey was Answered by…|
|The Person without Help (n = 10)||The Person with Help of Caregiver (n = 3)||The Caregiver (n = 13)||The Professional (n = 2)|
|Mean (ST)||Mean (ST)||Mean (ST)||Mean (ST)||Mean (ST)|
|Competence (PIADS)||0.60 (0.98)||0.75 (1.00)||0.86 (1.47)||0.42 (0.99)||0.58 (0.47)|
|Adaptability (PIADS)||0.56 (1.31)||0.98 (1.25)||1.06 (1.54)||0 (1.25)||1.33 (0.94)|
|Self-esteem (PIADS)||0.49 (0.91)||0.59 (0.43)||0.79 (1.71)||0.20 (0.92)||1.38 (1.24)|
|Score of matching (ATD PA)||3.94 (0.73)||3.96 (0.42)||3.87 (0.74)||3.82 (0.92)||4.67 (0.47)|
|Categorical Variable 1||Competence||Adaptability||Self-Esteem|
|Mean (ST)||F||p Value 2||Mean (ST)||F||p Value||Mean (ST)||F||p Value|
|The device was requested by…||Affected person||0.91 (1.05)||0.75||0.132||1.13 (1.27)||137.4||0.028||0.88 (0.89)||258.3||0.029|
|Caregiver||0.33 (0.89)||0.02 (1.20)||0.12 (0.83)|
|Type of device||Rest||0.09 (0.96)||365.2||0.011||0.30 (1.12)||0.982||0.051||0.56 (0.78)||284.3||0.022|
|Transfers||0.10 (0.72)||−0.50 (1.21)||−0.23 (0.99)|
|Mobility||0.83 (0.71)||0.79 (1.28)||0.32 (0.81)|
|Bathing||1.38 (0.65)||1.37 (1.00)||0.83 (0.33)|
|Diagnosis||ALS||0.40 (0.92)||−3.8||0.028||0.28 (1.22)||−4.1||0.018||0.39 (0.97)||−1.7||0.24|
|NMD||1.50 (0.77)||1.83 (0.97)||0.93 (0.38)|
|Quantitative Variables||Pearson Coefficient||p Value||Pearson Coefficient||p Value||Pearson Coefficient||p Value|
|Score of matching (ATD PA) 3||0.547||0.003||0.590||0.001||0.710||0.000|
|Variables||Model 1||Model 2||Model 3|
|Standardized β||p Value||Standardized β||p Value||Standardized β||p Value|
|Lineal Regression for Competence 1|
|Type of AT||0.612||0.001||0.547||0||0.485||0|
|Score of matching (ATD PA)||0.486||0.001||0.436||0.001|
|Lineal regression for Adaptability 2|
|Score of matching (ATD PA)||0.59||0.001||0.52||0.001|
|Lineal regression for Self-esteem 3|
|Score of matching (ATD PA)||0.71||0|
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Pousada, T.; Garabal-Barbeira, J.; Martínez, C.; Groba, B.; Nieto-Riveiro, L.; Pereira, J. How Loan Bank of Assistive Technology Impacts on Life of Persons with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases: A Collaborative Initiative. Int. J. Environ. Res. Public Health 2021, 18, 763. https://doi.org/10.3390/ijerph18020763
Pousada T, Garabal-Barbeira J, Martínez C, Groba B, Nieto-Riveiro L, Pereira J. How Loan Bank of Assistive Technology Impacts on Life of Persons with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases: A Collaborative Initiative. International Journal of Environmental Research and Public Health. 2021; 18(2):763. https://doi.org/10.3390/ijerph18020763Chicago/Turabian Style
Pousada, Thais, Jessica Garabal-Barbeira, Cristina Martínez, Betania Groba, Laura Nieto-Riveiro, and Javier Pereira. 2021. "How Loan Bank of Assistive Technology Impacts on Life of Persons with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases: A Collaborative Initiative" International Journal of Environmental Research and Public Health 18, no. 2: 763. https://doi.org/10.3390/ijerph18020763