Gemstracker Expertise team Rotterdam arm and hand: Web-based monitoring of physical,social and emotional functioning in patients with upper limb amputations

Abstract

Background and aim:

Patient-reported outcome measures are increasingly used to evaluate effectiveness of treatment. However, the use of ‘paper and pencil’ questionnaires is time-consuming for both patients and healthcare specialists. Therefore, the aim of this project was to develop a custom-built web-based monitoring system.

Technique:

We incorporated reliable and valid questionnaires on all domains of human functioning as described in the World Health Organization’s Classification of Functioning, Disability and Health (ICF and ICF-CY). The method of remote follow-up enables long-term evaluation of PROMs. We specified monitoring protocols for both children and adults, split for different age groups with emphasis on health-related quality of life.

Discussion:

Time-efficient evaluation of PROMs may lead to higher compliance and an increase of client-centred practice. Moreover, evaluating PROMs facilitates patient empowerment and enables patients to make informed decisions about their treatment and healthcare needs.

Clinical relevance

We developed a web-based system for evaluation of PROMs. The system has enabled better informed decision-making for our clients.

Keywords

Rehabilitation of amputees rehabilitation rehabilitation of prostheses and orthoses users qualitative methods use of information technology in rehabilitation

Background and aim

Our team is specialized in treating patients with congenital arm-hand disorders or an acquired amputation of the upper extremity. The age range of our patient population is broad, from prenatal consultation, screening and providing information, to adulthood. The composition of this patient group is unique to our country and is formed by many years of collaboration between our rehabilitation centre and the university hospital, enabling lifespan care on all domains of human functioning as described in the ICF and ICF-CY.¹

Currently, our institute is one of the leading three institutes in our country regarding patient population size. Patient care for this group is preferably concentrated at a university hospital because of the low prevalence and need for highly specialized and interdisciplinary care. These patients consult our team, ExtRah (Expertise team Rotterdam arm and hand), throughout their different lifespan transition phases and are provided with expert information. Patient outcome measures are usually evaluated at a low frequency, and treatment is initiated or intensified if problems arise.

Our team’s treatment philosophy is based on the client-centred care model. In this model, patients play an active role in enabling collaboration between patients and healthcare providers (doctor, therapist, prosthetist).² Research findings show that client-centred practice leads to improvement of client satisfaction and compliance to health service programs.³ Furthermore, respecting the individual client means having a high regard for his autonomy, values and cultures.⁴

Regardless our patient choices whether it is to learn to use a prosthesis, a task-specific tool or to function without help or aids, it should all be based on their autonomy. Patient involvement in the care process is crucial to optimize treatment.² Therefore, providing feedback on the quality of their care and, above all, the regained quality of life, enhances direct influence on their care process, enabling shared decision-making and facilitating higher patient involvement.⁵

Monitoring patient-reported outcome measures (PROMs) is relevant for both patients and our team. First, processing the data enables us to provide high-quality information within daily patient care facilitating well-informed choices on treatment and support in participation and quality of life. Second, by collecting the data digitally, the number of patient visits to the centre can be reduced. Third, when they fill out questionnaires prior to the visit to our centre, our practitioners have easy access to the results and are able to adjust their policy accordingly.

Nowadays, PROMs are commonly used to evaluate the effectiveness of treatment. ‘Paper and pencil’ questionnaires are time-consuming for both patients and healthcare specialists. Digital tracking and recording of PROMs has not been implemented structurally within the national working group for upper limb prosthetics care. Therefore, an interactive tool was desired.

Techniques

We developed and implemented a web-based monitoring protocol, evaluating PROMs of patients with a congenital hand difference or acquired amputation of the upper extremity. Gemstracker ExtRah offers by means of a standardized evaluation a base for research on quality and effectiveness. We aim to monitor our entire group of patients, both children and adults, on activities and participation with emphasis on and health-related quality of life (HRQoL).

Gemstracker was already operational in research projects at the departments of Rehabilitation Medicine and Plastic and Reconstructive surgery of Erasmus Medical Centre. Therefore, it was accessible and directly applicable at our institute. The disadvantages of using a system developed especially for our institute and patient group may limit generalizability for its application.

We have used LimeSurvey software, open-source software, in order to build Gemstracker ExtRah, which enabled digitalizing questionnaires and organizing them into monitoring protocols. Reliable and valid questionnaires that are widely used in rehabilitation medicine were incorporated.^6,7 These questionnaires provide information on all domains of human functioning as described in the World Health Organization classification of functioning, disability and health (ICF and ICF-CY). This digital monitoring system enables patients, physicians and/or therapists to enter information in a secure online application. Patients must give their written consent to participate in this project, before they receive an email with a unique token. This token directly matches the assigned questionnaires for this particular patient at that time. Gemstracker ExtRah automatically sends an email invitation at pre-set times (e.g. the start of the rehabilitation treatment, after 1 year and subsequently on a yearly basis) to provide long-term follow-up.

Gemstracker ExtRah has been in use since February 2016, enabling comparison between patients, patient groups and treatments. Results so far show a participation of over 130 patients in the monitoring database. First analysis of the data shows the spread across the age groups (Figure 1) and an overview of the completed questionnaires so far (Figure 2).

Figure 1.

Histogram age spread.

Figure 2.

Histrogram completed questionnaires.

We use a monitoring protocol for both children and adults, specified in age groups with emphasis on HRQoL to enable age-specific questioning. Tables 1 to 6 show the questionnaires used in the protocol based on the domains of the ICF and ICF-CY.

Table 1.

Questionnaires used according to the ICF/ICF-CY framework.

Body functions /structures	Activities	Participation	Health-related quality of life
VAS pain	PUFI	Social/emotional burden	TACQOL
	OPUS
	NL norm for healthy exercise
	DASH	TAPES
	Triage

VAS: Visual Analogue Scale; PUFI: Prosthetic Upper extremity Functional Index; TACQOL: TNO-AZL Children’s Quality of Life; OPUS: Orthotics and Prosthetics User’s Survey; DASH: Disabilities of the Arm, Shoulder and Hand; TAPES: Trinity Amputation and Prosthesis Experience Scales; NL: Dutch.

Table 2.

Monitoring protocol child 0–4 years.

Questionnaire	Details	Informant	Description
VAS pain	Pain score + triage	Parents	Start of clinical pathway ExtRah
Triage questionnaire parental version	Pain score + triage	Parents	Evaluation of problems experienced in daily life
UFI/PUFI	Intake, yearly	Parents	Measurement of the different aspects of the limb difference/measuring the degree of usefulness of a prosthesis
Questionnaire on emotional burden	Intake, yearly	Parents	The emotional burden that the child might experience in interacting with their social environment
TAPQOL	Intake, yearly	Parents	Health-related quality of life

VAS: Visual Analogue Scale; ExtRah: Expertise team Rotterdam arm and hand; UFI: Upper extremity Functional Index; PUFI: Prosthetic Upper extremity Functional Index; TAPQOL: TNO-AZL Preschool children Quality of Life.

Table 3.

Monitoring protocol child 4–7 years.

Questionnaire	Details	Informant	Description
VAS pain scores (wrist, elbow, shoulder bilateral)	Pain score + triage	Parents	Start of clinical pathway ExtRah
Triage questionnaire parental version	Pain score + triage	Parents	Evaluation of problems experienced in daily life
UFI/PUFI	Intake, yearly	Parents	Measurement of the different aspects of the limb difference/measuring the degree of usefulness of a prosthesis
Questionnaire on emotional burden	Intake, yearly	Parents	The emotional burden that the child might experience in interacting with their social environment
TAPQOL (1–5 years)TACQOL (6–15 years)	Intake, yearly	Parents	Health-related quality of life

Table 4.

Monitoring protocol child 8–12 years.

Questionnaire	Details	Informant	Description
VAS pain scores (wrist, elbow, shoulder bilateral)	Pain score + triage	Child	Start of clinical pathway ExtRah
Triage questionnaire version 8–12 years	Intake, yearly	Child	Evaluation of problems experienced in daily life
Triage questionnaire parental version	Intake, yearly	Parents	Evaluation of problems experienced in daily life
UFI/PUFI	Intake, yearly	Child, from 9 years of ageChild with parents	Measurement of the different aspects of the limb difference/measuring the degree of usefulness of a prosthesis
Questionnaire on emotional burden	Intake, yearly	Child, from 9 years of ageChild with parents	The emotional burden that the child might experience in interacting with their social environment
TACQOL (CF 8-15 years)TACQOL (PF 6–15 years)	Intake, yearly	Child CF versionParents PF version	Health-related quality of life

VAS: Visual Analogue Scale; ExtRah: Expertise team Rotterdam arm and hand; UFI: Upper extremity Functional Index; PUFI: Prosthetic Upper extremity Functional Index; TACQOL: TNO-AZL Children’s Quality of Life; CF: child form; PF: parent form.

Table 5.

Monitoring protocol child 12–18 years.

Questionnaire	Details	Informant	Description
VAS pain scores (wrist, elbow, shoulder bilateral)	Pain scores + triage	Child	Start of clinical pathway ExtRah
Triage questionnaire version 8–12 years		Child	Evaluation of problems experienced in daily life
Triage questionnaire parental version		Parents	Evaluation of problems experienced in daily life
UFI/PUFI	Intake, yearly	Child	Measurement of the different aspects of the limb difference/measuring the degree of usefulness of a prosthesis
Questionnaire on Emotional burden	Intake, yearly	Child	The emotional burden that the child might experience in interacting with their social environment
TACQOL	Intake, yearly	Child’s CF versionParent’s PF version	Health-related quality of life

Table 6.

Monitoring protocol 18 – adulthood.

Questionnaire	Details	Informant	Description
VAS pain scores (wrist, elbow, shoulder bilateral)	Pain scores + triage	Patient	Start of clinical pathway ExtRah
Triage questionnaire	Pain scores + triage	Patient	Evaluation of problems experienced in daily life
Dutch standard for healthy exercise	Intake, yearly	Patient	Standard for healthy daily exercise
OPUS	Intake, yearly	Patient	Functional status upper limb
TAPES version non-prosthetic wearerTAPES version prosthetic wearer	Intake, yearly	Patient	Measurement of the different aspects of the limb difference
DASH	Intake, yearly	Patient	Evaluation of the limitations of the arm, shoulder and hand
Questionnaire on emotional burden	Intake, yearly	Patient	The emotional burden that the child might experience in interacting with their social environment
TAAQOL	Intake, yearly	Patient	Health-related quality of life

VAS: Visual Analogue Scale; ExtRah: Expertise team Rotterdam arm and hand; OPUS: Orthotics and Prosthetics User’s Survey; TAPES: Trinity Amputation and Prosthesis Experience Scales; DASH: Disabilities of the Arm, Shoulder and Hand; TAAQOL: TNO-AZL Questionnaire for Adult’s Health-Related Quality of Life.

Discussion

Gemstracker ExtRah provides, in addition to the innovative value for the direct patient care, a base for research on quality, effectiveness, prognosis and outcome on PROMs of the questionnaires used. Our web-based monitoring database provides insight in PROMs and enables continuity in the monitoring of HRQoL of our patient group. Gemstracker ExtRah can supply data and insight into quality of care towards health insurance companies.

At the start of the project, we incorporated all questionnaires in use in our daily practice and used generic questionnaires instead of diagnosis specific questionnaires.⁵ We have made several choices in order to reduce patient time burden of the questionnaires.

Moreover, we changed our method of assigning questionnaires from doctor-driven to PROMs,^8,9 while using a maximum of 1 or 2 questionnaires per ICF domain. These choices were made on the basis of usability requirements such as patient burden, efficiency of the system and the goals for long-term follow-up. In the very young child, we focus on parent-rated outcome, but as soon as possible, the patient’s, or in this case the child’s, opinion prevails as much as possible.¹⁰ By making choices in which questionnaires we use, we may risk losing information.

Most questionnaires or assessments used in research papers regarding our patient group were focused on wearing or using a prosthesis.¹¹ However, it is our understanding that the HRQoL experienced by a person with an upper limb deficiency is not only influenced by whether or not they wear a prosthesis, or even the type of prosthesis, but by many other factors instead.^12–14 They are more likely to be based on activities and social participation.^15,16

However, we did incorporate the Prosthetic Upper extremity Functional Index (PUFI) because this questionnaire evaluates to what extent the child actually uses its residual arm, prosthesis or if the child is not able to perform the task.^11,17 With this questionnaire we are able to distinguish performance and capacity within activities.¹⁸ We incorporated the Trinity Amputation and Prosthesis Experience Scales (TAPES) and Orthotics and Prosthetics User’s Survey (OPUS) since these are able to describe the emotional and social status of a person in relation to whether a prosthesis is being used in daily life.^19,20 OPUS assesses clinically relevant domains of patient experience that should help clinicians provide high-quality care.²⁰ Within the national taskforce, we have agreed to use this measurement as a part of our national Prosthesis Prescription Protocol (PPP).²¹ Additionally, we incorporated Disabilities of the Arm, Shoulder and Hand – Dutch Language Version (DASH-DLV) because of its reported ability to be sensitive enough to describe the disability of the entire upper extremity without losing the ability to detect effects at each area or joint in the limb.²² We find this information valuable because a part of our patient group consists of patients with partial hand deficiencies and thus partial hand function can be measured by DASH-DLV.

We specified monitoring protocols for both children and adults, split for different age groups so they represent school ages and the most prominent moments across transition in lifespan. Research shows that patients tend to have a higher need for specific transitional care at specific moments such as changing school, puberty, or, for example, finding a job.^23,24

In addition, we composed a triage questionnaire. This questionnaire contains general questions on the domains of daily functioning such as activities of daily living, sports and work. Based on the outcome of this questionnaire, we aim to be able to select a supplementary questionnaire and add this to the monitoring protocol of this specific patient.

Our healthcare practitioners are able to gain insight in the level of functioning of the patient and the patient system with a low patient burden. The Gemstracker ExtRah database can provide data to create a reference framework (benchmarking) in which this specific healthcare can be evaluated, appropriate to an academic expertise care team.

Key points

Web-based evaluation of PROMs;

Monitoring protocols with emphasis on HRQoL;

Enabling informed decision-making.

Footnotes

Author contribution

All authors contributed equally in the preparation of this manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

References

World Health Organization (WHO). International classification of functioning, disability and health. Geneva: WHO, 2001.

Cardol

De Jong

Ward

. On autonomy and participation in rehabilitation. Disabil Rehabil 2002; 24: 970–974.

Sumsion

Law

. A review of evidence on the conceptual elements informing client-centred practice. Can J Occup Ther 2006; 73: 153–162.

Dedding

Cardol

Eyssen

et al . Validity of the Canadian occupational performance measure: a client-centred outcome measurement. Clin Rehabil 2004; 18: 660–667.

Gallagher

Desmond

. Measuring quality of life in prosthetic practice: benefits and challenges. Prosthet Orthot Int 2007; 31: 167–176.

Buffart

Roebroeck

Janssen

et al . Comparison of instruments to assess hand function in children with radius deficiencies. J Hand Surg Am 2007; 32: 531–540.

Clarke

. Functional evaluation in children with congenital upper extremity malformations. Clin Plast Surg 2005; 32: 471–483.

Ranganathan

Shapiro

Carlozzi

et al . The feasibility and validity of PROMIS: a novel measure of quality of life among children with cleft lip and palate. Plast Reconstr Surg 2016; 138: 675e–681e.

Waljee

Carlozzi

Franzblau

et al . Applying the patient-reported outcomes measurement information system to assess upper extremity function among children with congenital hand differences. Plast Reconstr Surg 2015; 136: 200e–207e.

10.

Bamm

Rosenbaum

. Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Arch Phys Med Rehabil 2008; 89: 1618–1624.

11.

Buffart

Roebroeck

van Heijningen

et al . Evaluation of arm and prosthetic functioning in children with a congenital transverse reduction deficiency of the upper limb. J Rehabil Med 2007; 39: 379–386.

12.

Ardon

Janssen

Hovius

et al . Low impact of congenital hand differences on health-related quality of life. Arch Phys Med Rehabil 2012; 93: 351–357.

13.

Franzblau

Chung

Carlozzi

et al . Coping with congenital hand differences. Plast Reconstr Surg 2015; 135: 1067–1075.

14.

Johansen

Ostlie

Andersen

et al . Health-related quality of life in adults with congenital unilateral upper limb deficiency in Norway. A cross-sectional study. Disabil Rehabil 2016; 38: 2305–2314.

15.

Michielsen

Van Wijk

Ketelaar

. Participation and quality of life in children and adolescents with congenital limb deficiencies: a narrative review. Prosthet Orthot Int 2010; 34: 351–361.

16.

Michielsen

Van Wijk

Ketelaar

. Participation and health-related quality of life of Dutch children and adolescents with congenital lower limb deficiencies. J Rehabil Med 2011; 43: 584–589.

17.

Buffart

Roebroeck

Pesch-Batenburg

et al . Assessment of arm/hand functioning in children with a congenital transverse or longitudinal reduction deficiency of the upper limb. Disabil Rehabil 2006; 28: 85–95.

18.

Ardon

Janssen

Hovius

et al . Relationships among manual body functions, manual capacity, and bimanual performance using the prosthetic upper extremity functional index in children with congenital hand differences. Phys Ther 2014; 94: 767–775.

19.

Lindner

Natterlund

Hermansson

. Upper limb prosthetic outcome measures: review and content comparison based on international classification of functioning, disability and health. Prosthet Orthot Int 2010; 34: 109–128.

20.

Heinemann

Bode

O’Reilly

. Development and measurement properties of the orthotics and prosthetics users’ survey (OPUS): a comprehensive set of clinical outcome instruments. Prosthet Orthot Int 2003; 27: 191–206.

21.

Wijdenes

Brouwers

MAH

van Der Sluis

. Protocol Prijssystematiek Prothesen voor cliënten met een arm deficiëntie. PPP-Arm. Ned Tijdschr Reval 2013; 6: 311–314.

22.

Veehof

Sleegers

Van Veldhoven

et al . Psychometric qualities of the Dutch language version of the Disabilities of the Arm, Shoulder, and Hand questionnaire (DASH-DLV). J Hand Ther 2002; 15: 347–354.

23.

Merrick

McConachie

Le Couteur

et al . Characteristics of young people with long term conditions close to transfer to adult health services. BMC Health Serv Res 2015; 15: 435.

24.

Alsem

Verhoef

Gorter

et al . Parents’ perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services. Child Care Health Dev 2016; 42: 455–463.