Evaluation of Non Diseased Specified Outcome Measures in Hand Injuries to Assess Activity and Participation Based on ICF Content

Abstract

The objective of the study is to provide information about non disease specified outcome measures which evaluate disability in patients who have impairments in hand and upper extremity and to find the extent to which they are evaluating “disability” based on ICF hand Core Set (activity limitation and participation restriction). MEDLINE, CINAHL, GOOGLE SCHOLAR , OVID and SCIENCE DIRECT databases were systematically searched for studies on non disease specified outcome measures used to evaluate upper extremity function; only studies written in English were considered. We reviewed titles and abstracts of the identified studies to determine whether the studies met predefined eligibility criteria (eg, non disease specified out come measures used in hand injured patients). All the outcome measures which had eligibility included. After full text review ,7 non disease specified outcome measures in hand were identified. Studies were extracted, and the information retrieved from them. All the outcome measures which had incuded, were linked with ICF hand core set disability part (activity and participation). All of them only linked to 16 (42 %) components of ICF hand Core Set, which were most activity and less participation from ICF. None of the non disease specified out come measures in hand injuries cover all domains of disability from the ICF Hand Core Set.

Introduction

The upper extremity is integral to activities of daily living, self-care, work, leisure, and social activities. Any injury that affects this part of the body can impair its structure and function. Impairment in hand can cause problems such as limitation in “range of movement” and/or “sensation and power”, which can lead to disability. Although disablity is one of the hot topics in literatures, there is no complete agreement on its definition, which, in turn led to difficulty in developing and measuring outcome measures.

Disability is the functional consequence of impairment and is defined as an alteration of an individual’s capacity to meet personal, social or occupational demands. The relationship between disability and impairment is not a linear one. An impaired individual may or may not have a disability. But in contrast, based on defnition of the ‘Americans with Disabilities’ Act [1], an individual with a disability does have a physical or mental impairment that substantially limits one or more major life activities. Also, some authors [2] argued that disability is an incapablity of doing an action .

The attempt to define the disability began in 1950. In these initial attempts, impairment of any given severity were considered as sufficient to result in disability in all circumstances, in spite of practicing rehabilitation before then. However, the conceptual frameworks for modeling disability, which considered effects of rehabilitation on disability, were not appeared until 1970s [3]. These conceptual frameworks allowed greater scientific inquiry into both disability and rehabilitation. In 1972, World Health organization (WHO) provided a medical model of illness to evaluate health care that resulted in the foundation of International Classification of Disease (ICD). However, in 1980, it changed its focus toward the consequences of diseases and developed the International Classification of Impairments, Disabilities and Handicaps [4].

As environmental factors can play a critical role in disabilty [5], Nagi proposed a disability model that recognized the role of environment in explaning disability [6].

Later on, the International Classification of Function (ICF) were developed as revision of the ICIDH. The idea was to use less pejorative language (e.g., “participation” replaces “handicap” as a functional domain), incorporating environmental and personal factors as “contextual factors” that affect disability outcomes, and recognizing multiple levels and directions of potential causal relationship, [7, 8]. The ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that ” every human being can experience a decrement in health and thereby experience some degree of disability” [9].

Although disability is not something that only happens to a minority of humanity, ICF takes into account the social aspects of disability and does not see disability merely as a ‘medical’ or ‘biological’ dysfunction [10].

According to ICF category, there are two parts in defining health. Part 1 covers functioning and disability including body function and structure, activities, and participation. Part 2 deals with contextual factors and includes environmental and personal factors. The model conceives these components as separate but related constructs with dynamic interactions between health conditions [9]. Based on ICF, impairment is defined as a problem in the body function or structure that results in a significant deviation or loss. Activities refer to the execution of a task or action by an individual, and participation refers to involvement in a life situation [10]. Body functions and structures impairment are not necessarily coupled with activity limitations or participation restrictions. Sometimes, minor impairments can lead to substantial activity limitations or participation restrictions.

To ICF, disability is an umbrella term for activity limitations and participation restrictions [11]. Not all impairments result in disabilities, therefore a person can be disabled but not handicapped [12].

To make the ICF applicable in practice and to allow a user-friendly description of functioning and disability, ICF Core Sets have been developed. It facilitates the description of functioning in clinical practice by providing lists of categories that are relevant for specific health conditions and health care contexts [13]. The comprehensive ICF Core Set for Hand Conditions has been adopted and validated in a national multicenter study and its main purpose was to guide multidisciplinary assessments in treatment and rehabilitation of the hand-injured patients. Core Set contains a set of 117 ICF categories [14].

In the therapeutic process, hand therapists determine which impairments are contributing to disability and design a treatment plan. They need to evaluate changes in impairment and disability over time to know whether treatments are efficacious. They also need to demonstrate to others that their treatment resulted in a clinically important improvement [15].

Impairment evaluation is done routinely in hand clinics (like evaluation of range of motion with goniometer or sensation with monofilament) [16]. However, disability is influenced not only by impairment but by patient related subjective factors [17]. Therefore, an outcome assessment tool should measure both of these separately. Such outcome tools can measure the effectiveness of treatment regimens and rehabilitation protocols more precisely.

With this development in understanding, an outcome measure that contains the meaning of disability in ICF hand Core Set is now needed. There are self-repoted questionnaires that purported to evaluate disability in hand injuries. Some of these questionnaires target general hand conditions (Non disease specified) and some target specific conditions like rheumatoid arthritis questionnaire. To know how much the concepts of ICF is being considered in them, linking to ICF codes were done [18–23]. Since according to ICF, disability is an activity limitation and participation restriction, in order to evaluate disability in hand, the questionaries must be linked with activity and participation part of ICF hand core sets.

In the recent years, various subjective hand function (disease specified or non disease specified) questionnaires have been developed to improve the quality of evaluation [24, 25].

The aim of this review is to find the extent to which available non disease specified outcome measures in hand injured patients are evaluating “disability based on ICF hand Core Set” (activity limitation and participation restriction).

Methods

Study Design

This review was done in two steps. In the first step, literature was reviewed to identify the non disease specified outcome measures in hand injuries. As the self-report outcome measures can provide subjective information of patients to assist in decision making in therapeutic process [26], we only included self-report outcome measures. In the second step, the selected measures were examined to find the extent to which their items are linked with ICF hand Core Set and meanings of disability (activity and participation as coded “d”).

Search Strategy and Eligibility Criteria

First, the MEDLINE, CINAHL, OVID and SCIENCE DIRECT databases were searched. The following keywords or Mesh-terms were combined with “OR” then by “AND”; “upper extremity”, “hand”, “arm”, “assessment”, “measure”, “measurement”, “instrument”, “test”, “evaluation”, “outcome”, “scale”.

Then, the names of previously identified measures were entered in a database by combination with: “function”, “activity”, “activities”, “performance” and “ICF”. Studies with Non-human population, languages other than English or with no full text available and studies, which used disease specified outcome measures were excluded. Applying the same general and specific eligibility criteria, the abstracts also were checked. Then, the full texts were reviewed and the same criteria were used. Finally from 2380 articles, 2130 articles were excluded after going through their title and abstract. Full texts of 79 articles were reviewed. After this full text review, 7 non-diseases specified outcome measures in hand were identified.

Data Extraction and Results

Measures and Their Purpose

After reviewing the studies, seven non diseases specified outcome measures in hand disorders were selected. They were analyzed to find out their authors’ purpose of developing them. They were evaluated further to find out the extent to which they matched with ICF definition of disability (part of activity and participation in hand core Set) (Table 1).

1. Disabilities of the Arm, Shoulder and Hand (DASH), [27] was developed to assess body function, participation and two types of activities (single tasks and total)[28]. It has 30 items that address arm-specific symptoms and disability during the preceding week. Items are answered on a 5-point Likert scale. The overall score is scaled from 0 (no disability) to 100 (most sever disability). The majority of the questions are concerned with functional activities requiring use of the upper extremities, and the remaining questions include the followings: 2 items specifically relating to pain, 3 questions relating to other symptoms, one question addresses social life, one is directly related to work, one is related to sleeping, and one item aims to determine the patients perceptions of their own capabilities. It contains two modular parts: work and leisure with 8 items.

2. Michigan Hand Outcomes Questionnaire (MHQ) [29] is a questionnaire composed of 37 items to evaluate body function, activity and participation [28, 30]. Items are scored on a 5-point Likert scale. The overall score is ranged from 0 (most sever disability) to 100 (no disability). It is specifically related to the hand and is categorized under the following six domains: 1) overall hand function, 2) activity of daily living, 3) pain, 4) work performance, 5) aesthetics, and 6) patient satisfaction of hand functioning.

Table 1.

Description of the data of the questionaires

Measure	Target population	Number of scales	Number of items	Range of scores	Studied populations
DASH [27]	Upper-extremity Musculoskeletal conditions	1	30 + 8	0-100	Shoulder and hand/wrist Disorders, acute hand/wrist Trauma, diverse hand/wrist Surgery
MHQ [29]	All types of hand/wrist conditions	6 (ADL, pain, work, function, Aesthetics, Satisfaction)	37	0-100	Hand/wrist disorders referred for Surgery
HAT [39]	All types of hand/wrist conditions	7 (ADL, Fine hand skill, pain, Extension, Neurotic, Symptom, gross grasp Aesthetic)	30	0-100	Hand/wrist disorders
MAM-16 [36, 39]	All type of hand impairment	1	16	0 -100	Variety hand impairment
POS-hand/arm [37]	Hand and arm disorders	2	13	0 - 100	Pre and post surgery
PEM [39]	Hand impairment	3 (symptom, Function, satisfaction)	19	Percent of total	Hand/wrist disorders Function and outcome
ABILHAND [38]	Manual hand ability	ADL	23		RA

Each of the categories of MHQ is subdivided into right and left hand specific items, with the exception of the pain and the work performance categories. It contains a set of questions on bilateral task performance.

• 3)Hand Assessment Tool (HAT) [31], is a questionnaire composed of 14 items specifically related to the task performance of hand and wrist during past week. It was developed to address a full range of activities for patients with injuries specific to the hand and wrist [32–34]. It is categorized under 7 domains; 1) firm grip, 2) fine hand skills, 3) pain, 4) extension, 5) neurotic symptoms, 6) gross grasp, and 7) aesthetic. The HAT does not calculate a separate right and left hand score; however, hand dominance and location of injury are noted on evaluation. Items are scored on a 5-point Likert scale. The total score is ranged between 0–100 and calculated by formula with higher score representing greater activity limitation.
• 4)Manual ability measure (MAM) [35], was developed as a task oriented and patient centered tool that measures manual ability. It is a Rasch-built questionnaire with 16 items representing common tasks to tap into full range of functional use of the hand(s). Functional use of hand, or manual ability can be measured by this questionnaire. However, it has no participation items [31]. Items are answered on a 4-point Likert scale, that 4 is considered as “easy performing” and 0 as “never do”. The overall score is scaled from 0 (most sever disability) to 64 (no disability).
• 5)The patient’s outcome of surgery hand/arm (POS-Hand arm) [36] was designed specifically to evaluate the outcome of surgery [35]; [28]. It can be used before and after surgery to evaluate grip strength and range of motion. It includes 29 items that create three scales: physical activity (12 items), symptom (12 items), psychological functioning and cosmetic appearance (5 items). Items are scored on a 5-point Likert scale. The overall score is scaled from 0 to 100 and are calculated by formula. Summing the items generates three summary scale scores. Then, these scores are transformed to a 0–100 scale. Higher score indicates better health.
• 6)ABILHAND [37] was developed as a Rasch-built measure to measure manual ability. It includes 23 items and is scored as 4-point likert scale, that 0 is considered as no activity and 4 as fully and easily performing activity. It considers ability as the capacity of a person as a whole to execute activities. It was designed with a simple layout with items in a visual analogue form. Items include extended activities of daily living, such as cooking, office work, and handiwork. The overall score is scaled from NA (not applicable), 0 (most sever disability) to 46 (no disability).
• 7)Patient evaluation measure (PEM) [38, 39] was developed to assess outcome of treatment in a visual analogue form. It contains three domains: 1) treatment with 5 items, 2) profile of hand health with 11 items, and 3) overall assessment with 3 items. Items are scored on a 7-point Likert scale from that 1 is considered as strong or normal and 7 is considered as weak or absent result. The PEM score is calculated by summing the values for each item in subscales two and three and expressing it as a percentage of maximum possible score (0–98 that the higher score means the higher disability).

Linking to ICF

In the next step, the selected items of measures were linked to ICF hand Core Set. Hand Core set contains 117 components and 38 (32 %) of them refer to the Activities and Participation category [40]. This category was chosen to evaluate disability. The result has been shown in Tables 2 and 3. It provides a propitiate view on the extent they matched with the framework of the ICF hand Core Set. The Linking was done based on the rules of linking [41, 42].

Table 2.

Linking outcome measures to Disability (activity and participation) category of ICF Hand Core Set

Codes	Activity and participation	DASH	MHQ	MAM16	POS	HAT	ABILHAND	PEM
d170	Writing	2		16	2h	1
d230	Carrying out daily routine	23,9						8b
d360	Using communication devices and techniques			10	2d
d410	Changing basic body position
d420	Transferring oneself
d430	Lifting and carrying objects	10	24			9
d4400	Picking up		17,12	2	2a
d4401	Grasping		13,18		2h2	4		7b
d4402	Manipulating	16	14,19,22	3,4,5,10,11,12,14	2b	2,6	1,3,6,7,10,11,12,14,15,16,20
d4403	Releasing
d4408	Fine hand use, other specified		27	8,9	2d	2	2,3,4,7,8,16,17,18,19
d4450	Pulling
d4451	Pushing	5
d4452	Reaching	6
d4453	Turning or twisting the hands or arms	1,3,12	11,16,21	12,13,7	2c,2f,2g2,2g,2i	3,7,5	1,5,8,9,13
d4454	Throwing
d4455	Catching
d4458	Hand and arm use, other specified	12,14		6,15			5,6,7,11,13,14,17,18
d455	Moving around
d465	Moving around using equipment
d470	Using transportation	20
d475	Driving
d510	Washing oneself	13,14	26				20
d520	Caring for body parts
d530	Toileting				2j	8
d540	Dressing	15			2e,2f		10,12,16,18
d550	Eating		23	1
d560	Drinking
d570	Looking after one’s health
d620	Acquisition of goods and services
d630	Preparing meals	4
d640	Doing housework	23,7	25					8b
d650	Caring for household objects
d660	Assisting others
d7	Interpersonal interactions and relationships	22,21
d810/ d839	Education
d840/ d859	Work and employment	23,4w,3w, 2w,1w	1-5w					9b
d920	Recreation and leisure	17,18,19,1s,2s,3s,4s				13

30 of 38 DASH (78 %) to 16 (42 %)ICF disabilities

20 of 37(54 %) MHQ to 10(26 %) ICF disabilities

All of MAM-16 to 8(21 %) ICF disabilities

12 of 29(41 %) POS to 9(23 %) ICF disabilities

10 of 14(71 %) HAT to 7 (18 %)ICF disabilities

All of ABIL HAND (20 ta manual ability in RA) to 6(16 %) ICF disabilities

4 of 19 PEM to 4 ICF disabilities

Table 3.

Percent of items linked to ICF and ICF components are covered by measure

	Items linked		ICF covering
Measures	N	%	N	%
DASH	30	78	16	42
MHQ	20	54	10	26
HAT	10	71	7	18
MAM-16	16	100	8	21
POS-hand/arm	12	41	9	23
PEM	4	21	4	10
ABILHAND	23	100	6	16

As shown in Table 3, DASH, MAM-16, POS Hand/Arm, MHQ, HAT linked to 16 components (42 %), to 8 components (21 %), 9 components (23 %), 10 components (26 %), 7 components (18 %) of ICF hand Core Set categories of activity and participation respectively. DASH and MHQ had the most covering to ICF hand Core Set part of activity and participation (Fig. 1). They are evaluating disability but not its entire domain.

Fig. 1.

Percent of ICF components covered by hand measurres

All of the items of ABILHAND and MAM-16 were covered by ICF components. In other measures, out of 38 items of DASH, 30 items (78 %), out of 37 of MHQ,20 items (54 %), out of 19 items of PEM, 4 items (21 %), out of 14 items of HAT, 10 items (71 %) , and out of 29 items of POS-HAND, 12 items (41 %) linked to ICF hand Core Set components of activity and participation categories.

16 (42 %) components of activity and participation of ICF hand Core Set were not considered in outcome measures (Tables 2 and 3).

Discussion

The aim of this review was to find out the non disease specified outcome measures used in hand injuries to assess disability based on ICF(which considered as activity limitation and participation restriction) [43–45] and to evaluate to what extent their items linked with components of activity and participation category of ICF hand Core Set.

The review showed there is seven patient-report non-disease specified measures that are being used to access the disability in hand conditions; (DASH, MAM-16, POS Hand/Arm, MHQ, HAT, PEM, ABILHAND). The main results of this study can be categorised in three domains:

1. None of the measures are linked with all components of ICF.

2. The items in the measures that are not linked with activity and participation category of ICF, either belong to the other catgories or don’t link with ICF at all.

3. ICF contains some components that are not covered by any of the measures.

All of the measures only linked to 16 out of 38 (42 %) components of activity and participation from hand Core Set. DASH has the most (42 %) and PEM the least (10 %) linking to ICF components. The measures consider disability as activity limitation and participation restriction, therefore they do not merely assess disability. Previous studies conducted to link hand outcome measures [23, 46] in upper extremity also showed that none of them were fully linked to ICF. Furthermore, results of this study is in concurrence with other studies indicated that the most components of ICF addressed in the outcome measures are about activity [47] which is defined as the execution of a task or action( for example ABILHAND, MAM-16). Although, all the items of those measures are fully linked to ICF, but they only linked to 6 components of activity and participation. As their content mostly address task from ABILHAND (open a jar) and manual ability from Mam-16( buttoning a shirt), they cover the activity parts of ICF.

The second result, showed that the activity limitations and participation restrictions are not yet fully considered by the measures. The measures contain items that can be linked to the body function and structure of ICF categories, for example “arm shoulder and pain” (DASH) and “how did your fingers move?” (MHQ) or environmental and personal factors, for example “ I was satisfied with appearance of my hand” (MHQ), Which are not considered as disability [48]. These results are supported by several studies [47, 49], which indicate that most of the outcome measures that are being used in hand therapy and surgery assess the body function and structure domains of ICF [17]. Most frequently research addressed in Body Functions, which consistent with studies on conditions such as hand osteoarthritis, scleroderma, Dupuytren’s contracture, systemic lupus erythematous, or digit amputations[11, 17, 50]. Although these aspects of functioning are important to be measured, but based on ICF, they are not considered as disability [51].

The final result indicated that ICF contains some of components from activity and participation category, which not considered in measures, like; Changing basic body position (d410), Catching (d4455) Preparing meals (d630) Moving around using equipment (d465). Reviewing the content of the ICF components that are not considered in measures, indicated that most of them which focused on the concepts (assisting others; d660, doing house work; d640) could be defined as participation. Also, based on ICF texonomy involvement in life situation is considered as participation [52]. Moreover, [44] participation is performing roles in the domains of social functioning, family, home, financial, work/education, or in a general domain.

Although, the ICF has defined activity and participation separately, they are considered as one category. It makes it difficult to clearly operationalize these different concepts in measurements [44, 53].

As impairment can be considered at the organ level, disability at the person level and handicapped at the social level [54], it is ideal to distinguish activity and participation meanings in ICF coding, e.g. a patient with a ulnar nerve lesion will have difficulties in doing key pinch activity and in this level he is disable, but based on personal (i.e. motivation) and environmental factors (i.e. using splint) he may or not have difficulty in opening the door with a key, that is done in social level and indicates his participation. The relation between impairment and activity limitation and participation restriction can show the efficiency of treatment, as the final goal of rehabilitation is ability in spite of impairments.

There appears to be no consensus on appropriate instruments to assess disability in patients with hand injuries [55]. It can be due to disagreement on defining disability. It is ideal to distinguish activity and participation components to know disability in personal level and social level [53]. This distinction can lead to the stablishment of the relation between impairment in organs with disability in personal or social level.

Therefore, controversies in disability definition were the most challenging parts of this study. Also, lack of distinction between activity and participation makes it difficult to identify that which one of them can be the direct consequence of impairments and wether both of them are affected by social and personal factors or not. It is preferred to characterize activity and participation to know appropriate description of disability and handicapped.