Edited by: Tsan-Hon Liou, Taipei Medical University, Taiwan
Reviewed by: Wu Ting-fang, National Taiwan Normal University, Taiwan; Wen-Chou Chi, Chung Shan Medical University, Taiwan
This article was submitted to Human Functioning, a section of the journal Frontiers in Rehabilitation Sciences
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Persons with neurological diseases often have some degree of cognitive impairment. They are in need of assistive technology for cognition (ATC) to compensate for cognitive impairments that affect their daily functioning. Goal setting in relation to cognitive deficits using ATC are common in clinical practice, and therapists often set several rehabilitation goals together with a patient. However, these rehabilitation goals are usually phrased differently, which limit the comparison of ATC and rehabilitation goals. It is thus valuable to link the goals to some standardized terminologies, such as the International Classification of Functioning, Disability and Health (ICF). Furthermore, goal achievement is seldom used to evaluate long-term effects of ATC in persons with neurological diseases and limited attention has been paid to the factors that predict goal achievement in using the ATC as cognitive support in persons with neurological diseases. The aim of the project is 3-fold. Firstly, we will use the ICF to link rehabilitation goals regarding the use of ATC in adults with neurological diseases. Secondly, we will evaluate effects of the ATC using goal achievement over a 5-year period. Thirdly, we will explore the variables that predict goal achievement in relation to the effects of ATC.
Neurological diseases are diseases of the central and peripheral nervous systems that negatively affect cognition, independence, and daily functioning. They are one of the leading causes of disability and unfortunately, advances in prevention and management of major neurological disorders are not sufficiently effective to encounter global burden of neurological diseases (
ATC are technologies designed to compensate for cognitive impairments as we mentioned earlier. Most of the ATC available in the commercial market are designed for the areas of time/day orientation, organization of daily activities and management of daily routine. Common examples of ATC are visual and audio reminders to perform a given task at a particular time, electronic clocks that visualize the time in different colors or modes (analog or digital), electronic calendars that visualize days and weeks and electronic planners that visualize activities during the day and week (
However, it is a complex interaction among the person with neurological disease, the activities that she or he wants to engage in, the environment or context in which the activity occurs, and the ATC that is available to support the activity. The International Classification of Functioning, Disability and Health (ICF) (
During the community rehabilitation phase, patients with neurological diseases need cognitive support (ATC) to be able to perform different activities, alone or with others in different environments. Often, goal setting in this rehabilitation phase is important because it motivates both the patient and the rehabilitation team to work toward the same goal (
However, although goal setting in relation to the prescription of ATC is a common clinical practice, effects of ATC in relation to goal achievement are seldom investigated in persons with neurological diseases. Measuring goal achievement in relation to the effects of ATC is to measure the extent to which patient's individual goals are achieved after the prescription of ATC. Particularly, there is a lack of literature that reports goal achievement in relation to the use of ATC to support different levels of participation, such as cognitive support for returning to work, or cognitive support for social functioning. Furthermore, despite the potential benefits of ATC reported in numerous studies, there are very few longitudinal studies that report the long-term effects of ATC in persons with neurological diseases. Long-term effects are crucial for different reasons. First, a long-term follow-up evaluation will provide a better picture whether the technology has been fully integrated into the user's everyday life. Second, learning and using ATC often requires a substantial degree of cognitive function, especially for those with moderate cognitive impairments. A long-term follow up will show the learning progress of ATC users. Third, development of ATC is advancing rapidly, and new ATC are released every year. Long-term follow up of the usability of ATC will show a better view of any improvement in human-machine interface. Fourth, the aim of ATC is to increase independence of the patients and reduce the burden on caregivers. However, environmental factors, such as caregivers that are close to the person, can be either barriers or facilitators in the use of ATC (
Thus, the aim of the study is 3-fold. Firstly, we will use the ICF to link rehabilitation goals regarding the use of ATC in adults with neurological diseases. Secondly, we will evaluate effects of the ATC using goal achievement over a 5-year period. Thirdly, we will explore the factors that predict goal achievement in relation to the effects of ATC.
A longitudinal prospective study will be used to answer the aim. The study is a 5-year project and data will be collected at different time points during a 5-year period.
Inclusion criteria are (i) patients who have a neurological disease, (ii) patients who have a need for at least one ATC, and (iii) age 18 or over. We will exclude patients with neurological diseases who have other non-neurological diseases.
The study has received ethical approval from Swedish Ethical Review Authority. The number is Dnr 2021–01337.
We will recruit patients with different neurological diseases
Information about the study will be sent to the homes of potential participants. The patients and their families will have the opportunity to ask questions about the study and how data will be extracted from their records. The patients will be assured that their refusal of participation will not affect the health care service they will continue to receive from the rehabilitation center. Once a patient has consented to take part in the study, a research assistant will start data collection from the patient's records.
We will extract data before, during and after the prescription of the ATC. The following data will be extracted:
Number of diagnoses and symptoms: the number of health conditions will be measured by summing the number of neurological diagnoses (according to the ICD-10 SE) and the number of neurological symptoms. For example, a patient can have two neurological diagnoses, such as stroke and epilepsy.
Demographic data: We will collect data on age, sex (0 = male, 1 = female), marital status (0 = single, 1 = married, 2 = divorced, 3 = widow), years of education, living arrangement (0 = living alone, 1 = not living alone), availability of caregiver (0 = no caregiver, 1 = have caregiver).
Performance in everyday activities: We will collect results of the performance in everyday activities using the ADL Taxonomy (
Assessment of cognitive functions during everyday activities: the Cognitive Checklist is a checklist that assesses 11 cognitive areas in one of the everyday activities in the ADL-Taxonomy (
Choice of ATC: We will collect data on the ATC that will be chosen. The ATC will be primarily classified using the ICF cognitive functions (
Attention Functions (b140)
Calculation Functions (b172)
Emotional Functions (b152)
Higher-level Cognitive Functions (b164)
Memory Functions (b144)
Other ICF cognitive functions will be used to classify the ATC if none of the above ICF cognitive functions are appropriate. We will also classify the ATC using ICF categories in the environmental factor, e1151 Assistive products and technology for personal use in daily living.
Goal achievement using Goal Attainment Scale (GAS) (
−2: no change or current status
−1: less than expected
0: expected
+1: more than expected
+2: much more than expected
Actions, activities and equivalent ICF categories in the ADL-Taxonomy.
| Reading and writing | • Writing signature, d170 |
| Handling communication aids | • Managing computer/tablet, d3601 |
| Orientation and Mobility | • In known indoor environment, d4600 |
| Transportation | • Going by car, d4701 |
| Personal hygiene | • Washing oneself, d510 |
| Grooming and brushing teeth | • Shaving/make-up, d5200 |
| Toileting | • Cleaning oneself after elimination, d5300, d5301 |
| Dressing | • Undress, d5401 |
| Eating and drinking | • Drinking alone, d560, d2102 |
| Shopping | • Daily or small quantity shopping in neighborhood shop, d6200 |
| Cooking | • Heating up liquid or prepared food, d6300 |
| Cleaning | • Identifying need for cleaning, b1641 |
| Washing | • Washing, d6400, d6403 |
| Handling economy | • Withdraw money, d860 |
| Interactions with others | • Interacting with few people, d720 |
| Managing the day/time | • Getting up in time, d230 |
The areas in the cognition checklist and the equivalent ICF categories.
| Alertness and attention | b110 consciousness functions |
| Registration and recognition | b156 perceptual functions |
| Interpretation and gathering information | b117 intellectual functions |
| Memory | b144 memory functions |
| Time awareness | b1140 orientation to time |
| Initiating an activity | d2100 undertaking a simple task |
| Performing an activity with appropriate process skills | b164 higher-level cognitive functions d2100 undertaking a simple task |
| Completing an activity | d2100 undertaking a simple task |
| Planning and monitoring an activity with correct judgment | b1641 organization and planning b1645 Judgment d2100 undertaking a simple task |
| Emotional status during an activity | b152 emotional functions |
| Language skills | b167 mental functions of language |
A patient and their therapist will formulate a rehabilitation goal regarding the use of the ATC. This rehabilitation goal will then be used to develop a 5-step GAS. This 5-step GAS will be used to assess changes in reaching the goal in relation to the use of ATC. The GAS score will be evaluated by the therapist and the patient together. When the goal is reached within 5 years, that is, when the patient's goal has reached 0 or above, a new rehabilitation goal will be set.
Every participant will be given a unique number in an unidentified database. The database will be stored in a research computer that will be locked with a secure password, and only the research team will have the password to access the database.
To answer the first fold of the aim “linking rehabilitation goals regarding the use of ATC to the ICF”, we have developed a preliminary set of ICF categories for persons with neurological diseases in community rehabilitation. We began the development with examining and combining the two ICF core sets for neurological conditions (
Based on a previous evaluation of rehabilitation goals from the center in this project (unpublished work), we have selected the following ICF categories that are relevant to community rehabilitation. The process of updating this preliminary set of ICF categories will continue throughout the course of the project (
A preliminary set of ICF categories for rehabilitation goals in community rehabilitation for persons with neurological diseases.
| Chapter 1: learning and applying knowledge | d1551 acquiring complex skills |
| d177 making decisions | |
| Chapter 2: general tasks and demands | d210 undertaking a single task |
| d2102 undertaking a single task independently | |
| d2202 undertaking multiple tasks independently | |
| d2301 managing daily routine | |
| d2303 managing one's own activity level | |
| d2400 handling responsibilities | |
| d2401 handling stress | |
| Chapter 5: self-care | d510 washing oneself |
| d5201 caring for teeth | |
| d570 looking after one's health | |
| Chapter 6: domestic life | d6200 shopping |
| d630 preparing meals | |
| d6402 cleaning living area | |
| d6403 using household appliances | |
| d6404 storing daily necessities | |
| d6405 disposing of garbage | |
| Chapter 8: major life areas | d8501 part-time employment |
We will link the rehabilitation goals to the ICF categories according to the linking rules suggested by Cieza et al. (
Two examples of linking rehabilitation goals to the equivalent ICF categories.
| Using the time and planning application in his own mobile phone as a reminder, he remembers and knows when to return to his apartment to have lunch at the correct time. | b1442 retrieval and processing of memory |
| d 2301 managing daily routine |
|
| e1151 assistive products and technology for personal use in daily living | |
| Using an electronic calendar to get an overview of daily activities | d 2301 managing daily routine |
| e1151 assistive products and technology for personal use in daily living |
The changes in GAS scores will be used to evaluate the effects of ATC in supporting daily functioning. All patients in the study will have at least one rehabilitation goal in relation to the use of ATC as cognitive support over a 5-year period. Each goal will be rated on a 5-point GAS (between −2 and +2), with the degree of attainment capture for each scale level. The overall GAS will be calculated as described in Turner-Stokes (
Where
Multiple regression analyses will be performed at six different time points to explore the variables that predict goal achievement of the patients. The time points are: 6 months after receiving the ATC, 1 year, 2 years, 3 years, 4 years, 5 years. First, using a standard multiple regression, the following variables were entered in the model: GAS score (between baseline score and final score), number of diagnoses, number of neurological symptoms, living condition, ADL-taxonomy score, Cognitive checklist score and part-time job. The best predictor variable for goal achievement will then identified. Second, hierarchical multiple regression will be performed to assess the ability of this best predictor to predict goal achievement after controlling for the influence of the other variables.
It is a complex interaction between the person with neurological disease, the activity in which she or he wants to engage in, the environment or context in which the activity occurs, and the ATC available to support the activity. The ICF is a common framework for all health professionals for the coding of functioning. Linking the rehabilitation goals to the ICF categories will provide a comprehensive overview of the goals in relation to the use of cognitive assistive technology and helps to identify the aspects that are lacking in rehabilitation service for persons with neurological diseases. Goal achievement is seldom used to evaluate long-term effects of ATC in persons with neurological diseases and limited attention has been paid to the factors that predict goal achievement in using the ATC as cognitive support in persons with neurological diseases.
The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.
The studies involving human participants were reviewed and approved by Swedish Ethical Review Authority. The patients/participants provided their written informed consent to participate in this study.
HL led on the writing of this manuscript and NB read and approved the final version.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
We want to thank occupational therapist Anna-Lena Johansson for her suggestions of ICF categories in the