Background: Quality of life (QoL) is an important parameter to monitor during rehabilitation; however, accurate assessment is challenging. Among individuals with spinal cord injury (SCI), assessing QoL is further challenged due to complex sequelae, such as secondary health conditions and factors related to community integration. A Participation and Quality of Life (PAR-QoL) toolkit was created to aid clinicians and researchers in the selection of QoL outcomes tools specific to SCI. Objectives: The aim of this study was to evaluate the use and usability of the PAR-QoL toolkit. Methods: A cross-sectional study was conducted using an online survey from December 2013 to November 2016. Google Analytics were collected from April 2012 to April 2018. Survey sections addressed “use” (behavioral practices and actual use) and “usability” (perceived ease of use and perceived usefulness). Any person who visited the PAR-QoL website was invited to complete the survey. Summary statistics and percent concordances were calculated to describe results from the survey and Google Analytics. Results: The PAR-QoL website had 188,577 users. The five most visited webpages were outcome tools, with bounce rates ranging from 77% to 90%. Of the 46 survey respondents, 67% were not current users of the PAR-QoL website, and 87% intended to use the resources in the future. Conclusion: Uptake of the PAR-QoL website is currently limited. Usability of the PAR-QoL website may be improved by modifying navigation, removing the “less useful” components, ensuring regular updates of content and resources, and promoting the website.

Quality of life (QoL) is an important parameter used by clinicians and researchers to monitor response to rehabilitation.1,2 However, the assessment of QoL presents a constant challenge to researchers, as there are several competing opinions on the determinants of QoL. Multiple attempts have been made toward an operational definition of QoL and its domains.2 The World Health Organization defines QoL as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”3 (p1) There is an added complexity to understanding and measuring QoL among individuals with spinal cord injury (SCI), as individuals experience physical impairments, secondary sequalae, and challenges associated with return to community living after rehabilitation. For example, individuals with SCI experience mobility limitations due to paralysis, secondary health conditions (eg, bladder and bowel dysfunction, pain, spasticity),4 and barriers reintegrating into homes and communities. Given the sensitivity of QoL to various contextual factors, secondary health conditions and factors related to community integration can further complicate assessment of QoL.5 Furthermore, secondary health conditions can negatively impact various life domains (eg, housing, transportation).6–8 Therefore, it is important that clinicians and researchers understand the concepts being assessed by QoL outcomes and that the tools they select are validated and responsive to detecting changes on the outcome of interest.8 

Although websites have been developed to facilitate access to outcome tools in rehabilitation, such as Rehab Measures (https://www.sralab.org/rehabilitation-measures), to our knowledge there are only two that are specific to SCI: the Spinal Cord Injury Research Evidence (SCIRE) project (https://scireproject.com) and the Participation and Quality of Life (PAR-QoL) website (www.parqol.com). SCIRE was developed as a means to review and summarize existing evidence related to SCI, thus is not specific to QoL. However, the PAR-QoL was developed to highlight the previously mentioned key considerations in QoL outcome measurement.5 

Dijkers's model of QoL was used as a guiding framework to conceptualize a roadmap that aids in the selection of QoL outcomes among individuals with SCI. For each outcome tool identified in the literature, underlying QoL constructs are summarized. Dijkers's model provides a framework to define an outcome measure as subjective (insider's perspective on QoL) or objective (societal viewpoint on QoL),1 which is a critical measurement issue in the field that has been poorly recognized to date5 (see Dijkers1 for a full review).

To our knowledge, PAR-QoL is the only evidence-based and theory-guided web-based toolkit that provides a list of QoL outcomes tools that are suitable for SCI and SCI-related secondary health conditions. The evidence on the applicability of the tools to assessing QoL post-SCI was identified through a series of systematic reviews.5–9 Further systematic reviews were conducted after the launch of the website, and it was updated accordingly.10,11 For each outcome tool, summaries are provided that include description, format, administrative burden, psychometric properties, available languages, QoL domain, and how to obtain the outcome tool. Some examples of outcome tools on the website that have been used to evaluate QoL include the General Health Questionnaire,12 Pain Disability Index,13 Subjective Quality of Life Profile,14 Urogenital Distress Inventory,15 and WHO Quality of life – BREF.16 Visitors of the PAR-QoL website can search for an outcome tool either by secondary health condition, Dijkers's model of QoL, or by specific outcome tool. To stimulate uptake and continued use, interactive features were added, which included a Forum, a Blog, an Ask an Expert module (eg, invited experts answering questions submitted by visitors), a Newsletter, and a News and Events module.5 

The decision to format the PAR-QoL toolkit as a website holds several advantages for knowledge translation,5 a dynamic and iterative process of synthetization, dissemination, exchange, and application of knowledge.17 First, websites convey a large amount of information to a broad audience with little to no cost.18 In addition, knowledge translation tools that are made freely available online have been shown to enhance knowledge19 and are commonly preferred among clinicians.20 However, users require skills to navigate online resources, and there is no certainty that online content will be used as it was intended. Furthermore, some clinical workplaces block access to outside websites (eg, through firewalls), thus making information hard to access.21 

Usability testing is a critical step for the PAR-QoL website to determine if it provides useful and accessible knowledge to visitors.21 Usability testing evaluates attributes that influence user satisfaction, such as time and effort to access content, and the interaction between the user and the website.22 Better usability leads to a more efficient user–website interaction and increased satisfaction, which in turn increases the likelihood that the user will return.23 Therefore, usability testing, or the measurement of human–computer interaction characteristics where weaknesses are identified, is critical for the success of the website.22 The objectives of this study were to (a) describe the uptake of PAR-QoL website and (b) explore the usability of the PAR-QoL website.

Design and framework

A cross-sectional online survey was used to conduct this study ( Appendix). It was approved by a local research ethics board, the Comité d'éthique de la recherche des établissements du CRIR (project #CRIR-869-0813).

The Technology Acceptance Model (TAM) was selected to guide our approach, as it facilitates increased understanding of the acceptance of computer-based information systems and provides a framework to test the acceptance of a new system.24 This framework states that perceived usefulness and perceived ease of use of a system influence an individual's attitude toward using the system.24 Perceived ease of use and attitude comprise the main determinants of intention, which can then influence actual use of a system.25 The questions of the survey were based on the TAM variables, including Perceived Ease of Use (the degree to which a person finds a technology simple to use), Perceived Usefulness (the degree to which a person believes that using a technology will enhance performance), Behavioral Practices (a person's use of the technology in current work), and Actual Use (the number of times the technology was used).26 

Participants and recruitment

Visitors of the website had the possibility to click on a link leading to the survey. All study details (eg, aim, confidentiality, procedures) were provided to potential participants by clicking the link. First-time visitors of the site were instructed to view the content of the website and were provided with a link to a webinar explaining how to use the website. Potential participants were informed that consent would be assumed if they filled the survey. Any person who visited the website was eligible to participate.

Recruitment strategies included asking clinical practice leaders of occupational and physical therapy programs in rehabilitation centers in Canada to disseminate the survey link; sending formal invitations to SCI-oriented organizations; presenting a webinar including a link to the survey at the Paralyzed Veterans of America conference; and disseminating of the study by investigators using pamphlets at SCI conferences between 2014 to 2017 (ie, International Spinal Cord Society, American Congress on Rehabilitation Medicine, American Spinal Injury Association, Paralyzed Veterans of America, and Rick Hansen Institute Praxis Conference). The survey was accessible directly from the PAR-QoL website. The original English language survey was launched in December 2013. It was later translated into French and launched in July 2016. Data were collected between December 2013 and November 2016.

Measurement

Google Analytics (analytics.google.com; Google, Menlo Park, CA; 2007) and an online survey were used to assess use and usability. Google Analytics is a free web analytics program that generates statistical information about website traffic. It was used to obtain details of website utilization between April 2012 and April 2018. Information retrieved from the platform included total number of users; number of sessions per user; most popular pages; bounce rates (ie, the percentage of people who exited after viewing only one page); countries; new versus returning visitors; and number of visitors each month in relation to the number of news, events, and newsletters published on the website.

The survey was based on a previous survey that was developed by an investigator (L.A.) using the TAM to assess the usability of virtual gaming simulations to promote health education.26 The items of that survey had high internal consistency (Cronbach's alpha = 0.86).26 That survey was modified to align with objectives specific to PAR-QoL.

The first part of the survey consisted of sociodemographic questions about respondents. There was also an open-ended question asking respondents about their main reason for visiting the website. They were asked about their use of the website: if they had used it before and, if not, whether they intended to continue to use it. If yes, participants were then asked how they planned to use the website in the future. The second part of the survey contained questions about use and usability of the website. Participants were directed to that section of the survey even if they answered that they had not used the website before. Respondents were asked to rate their level of agreement on a 5-point scale ranging from strongly disagree to strongly agree. They were also asked to document the frequency of use of each of the website features (eg, Forum). The third part of the survey included four open-ended questions regarding how respondents used the website in their clinical practice, features of the website perceived to be most useful, features of the website that could be improved, and what could be done to make the website more useful.

Analyses

Analytical procedures related to website traffic were captured by Google Analytics software. The survey was created and managed online using Fluid surveys (https://fluidsurveys.com; Ottawa, Canada). Raw data were exported into and analyzed with Microsoft Excel 2007 (Microsoft Corporation, Redmond, WA). Summary statistics (frequencies and proportions) were used to analyze categorical data. Percentages were calculated on the number of respondents for each question. For items that required rating of level of agreement, five levels of agreement were collapsed into three (ie, disagree, neutral, and agree). Responses to open-ended questions were categorized according to similarities of replies among participants and narrative descriptions were summarized.

Website traffic data from Google Analytics showed that 188,577 individuals visited the PAR-QoL website and a total of 46 visitors completed the survey. Of these, 28 provided incomplete responses, thus the exact number of respondents is provided for each question. Participants who did not complete the second and third part of the survey were not using the website at the time of the survey. We hypothesized that these participants might have felt that they did not know enough about the website to answer the questions. Respondents ranged in age from 18 to 65 years and were predominantly female (74%) with at least some research experience (76%) and working in a rehabilitation facility (67%). Demographic information is summarized in Table 1.

Table 1.

Demographic information of survey respondents (N = 46)

Demographic information of survey respondents (N = 46)
Demographic information of survey respondents (N = 46)

Use of the PAR-QoL website

Google Analytics showed that the average number of sessions per visitor was 1.15, with an average of 1.45 pages per session. The bounce rate was of 82%. Figure 1 summarizes the data about use of the website retrieved from Google Analytics. The top five most popular pages were all outcome tools, with bounce rates ranging from 77% to 90%. The number of visitors of the website increased from 2012 to 2014 and then decreased until 2018.

Figure 1.

Participation and Quality of Life website utilization details from April 2012 to April 2018.

Figure 1.

Participation and Quality of Life website utilization details from April 2012 to April 2018.

Close modal

Two sections of the survey pertain to the use of the PAR-QoL website: Behavioral Practices and Actual Use. Of the 46 respondents, 33% were current users of PAR-QoL tools. Of the 67% of nonusers, 87% intended to use the resources available on the PAR-QoL website in the future. Table 2 presents how the website and its attributes were used. In the open-ended questions, participants named five main reasons for visiting the website: finding tools (45%), completing the survey (26%), professional interest (24%), finding information (21%), and curiosity (5%). They also identified three main ways they use the website in their work: finding tools (67%), identifying best practices (27%), and keeping current with news and events (13%). The most useful feature was reported to be the outcome tools (80%). Regarding the intention to use the PAR-QoL resources, the most common ways were to identify instruments for a research study (55%), to stay informed about the SCI community (48%), in their clinical practice (41%), and for program evaluation (28%).

Table 2.

Items pertaining to the actual use of the component of the Participation and Quality of Life website

Items pertaining to the actual use of the component of the Participation and Quality of Life website
Items pertaining to the actual use of the component of the Participation and Quality of Life website

Usability of the PAR-QoL website

Two sections of the survey pertained to the usability of the PAR-QoL website: Perceived Ease of Use and Perceived Usefulness. Overall, the majority of the sample perceived the website to be easy to use (79%) and to navigate (83%). Respondents agreed that they could find appropriate (79%) and trusted (71%) tools and that they could find tools quickly (63%). They felt that having access to the website was important (87%), and they would recommend the website to others (87%). However, less than half the respondents found that it enhanced communication to the SCI community (35%) and that it makes it easier to keep up to date with SCI news and events (45%). Furthermore, some participants disagree with the statement, “Better than other ways to find research tools” (13%). See Table 3 for details.

Table 3.

Items pertaining to the usability of the component of the Participation and Quality of Life website

Items pertaining to the usability of the component of the Participation and Quality of Life website
Items pertaining to the usability of the component of the Participation and Quality of Life website

The main improvement requested by respondents was the way to navigate the website. In their opinion, the information should be organized more clearly. Other concerns included the quantity and the quality of the information provided on the psychometric properties of the outcome tools, the need for direct links to the outcome tools, and the fact that the website was only in English. To make the site more useful, respondents suggested rearranging classification, developing a French version, and adding more up-to-date evidence. It was also suggested to increase the visibility of the website.

The PAR-QoL website (www.parqol.com) is an open-access online evidence-based toolkit that provides outcome tools used to assess QoL among individuals with SCI. Results of this study suggest that the PAR-QoL website could be useful for some researchers and clinicians but that the uptake and continued use is low. Although there were 188,577 visitors to the PAR-QoL website, the bounce rate was high (82%) and the number of sessions per user was low (1.15).

This may be explained by a lack of promotion and activity on the website. In the first 2 years of its implementation (ie, 2012 to 2014), there was an increase in the website global visibility. However, since 2014, the popularity of the website seemed to decline slightly. This may be partially explained by the decrease in the number of newsletters and events posted on the News and Events, which occurred due to a lack of funding for a dedicated webmaster. Continued uptake of the website would require maintenance of website activity, up-to-date content, and ongoing promotion. Social media has a modest influence on the use of online evidence-based options. However, researchers found that social media platforms could impact the adoption of outcome tools for clinical practice in rehabilitation.27 Therefore, use of social media for promoting the website could be increased. Facebook had the largest impact compared to other social media platforms such as Twitter or email.28 

Another explanation could be the usability of the website. Even though the majority of participants reported that the website was easy to use and to navigate, some did report a less than satisfactory experience. Modifications according to the comments of respondents could likely increase the number of visitors who explore past the home page and the number of returning visitors. To support visitors' knowledge of the website's features, a live 60-minute webinar was hosted in 2015, as introduction videos are routinely embedded as orientation tools on websites.29 It included an explanation of the content and provided a demonstration on how to navigate the website (http://parqol.com/2016/02/17/now-available-online-par-qol-webinar/). While it is important to note that the current website changed hosts in 2018 and therefore underwent a cosmetic change, the content orientation in the webinar is still pertinent to the new website.

Another recommendation would be to remove the components reported as less useful, such as the Blog, the Forum, and the Ask an Expert modules. This would allow the team to put more time and resources into popular components such as the Newsletter and the News and Events modules, which require frequent updates to keep the community engaged. The success of knowledge translation websites depends on ensuring continual updates of resources and content.28 Results support that improvements are needed in terms of updating the content and resources because some participants found that the website was used neither to enhance communication with the SCI community nor to keep up to date with events. Sustainability of similar knowledge translation tools has been successful through collaboration with professional associations and university graduate programs.30 

Although just one-third of respondents were using the website at the time of survey completion, the majority indicated that they planned to use the website in the future. Intention is an important indicator of future use according to the TAM.25 Furthermore, more than half of the participants expressed that they would recommend the website to others. The top five most visited pages were specific outcome tools, suggesting that clinicians and researchers were using the website as intended (ie, primarily to obtain information about a QoL outcome tool).

When compared to the SCIRE website, the PAR-QoL is similar in terms of population and development, as they are both based on rigorous literature reviews in SCI populations. However, the SCIRE project is not limited to outcome tools and presents videos and clinical resources. With specific focus on QoL, the PAR-QoL website provides a tool to aid in the selection of more outcome tools that are specific to QoL measurement. Furthermore, the classification using Dijkers's model fosters comprehensive evaluation of QoL because researchers and clinicians are provided with the QoL domains that these tools measure.

The TAM framework served as a useful framework for usability testing. The results of this study point to the value of usability studies in helping health website administrators and researchers identify the most useful components of their website and what is needed to make website access easy. In the future, it would be important to evaluate how users accessed the website (eg, computers, mobile phones) and to obtain feedback from users on the usability of these different platforms. The next step will be to implement the changes suggested by respondents and continue the evaluation–development cycle.

Limitations

The sample size is small despite the use of multiple recruitment methods. Only 46 visitors completed the survey, representing 1.5% of all visitors over the 5 years during which the study took place. This is coherent with the low uptake of the website. However, it takes on average 17 years to translate evidence into practice, and there are complexities over this period that need to be understood.31 Therefore, we believe this study is timely in the PAR-QoL development and that it brings useful information as we attempt to make some changes to promote further uptake. Also, SCI is a relatively small population and there is little understanding of what is QoL, so the number of SCI clinicians and researchers interested in QoL is limited. Furthermore, current literature suggests that there is no “magic number” to determine the required sample size to conduct a usability study.32 Therefore, we believe that even a small sample can provide useful information to improve the usability of the website.

Recruiting a convenience sample through research networks may have introduced a risk of bias due to existing collegial relationships between researchers and respondents. However, the survey was completed anonymously, and many were beyond arm lengths of the investigators. Finally, although a direct link to the survey was sent with personalized messages, reminders were not sent in a standardized way and no incentives were offered. These practices have been shown to improve response rates of web-based surveys.33 

The uptake of the PAR-QoL website, an online evidence-based knowledge translation toolkit, is currently limited. Improvements are needed to increase usability of the website, such as modifying navigation, removing the components reported as less useful, and ensuring the update of the content and resources as well as the promotion of the website. Further usability testing will be warranted once the modifications are made to validate that the website reaches its knowledge translation goals.

Drs. Routhier and Hitzig report grants from Ontario Neurotrauma Foundation and Réseau provincial de recherche en adaptation-réadaptation during the conduct of the study. Drs. Best, Routhier, and Kairy are Research Scholars of the Fonds de recherche du Québec-Santé. The other authors report no conflicts of interest.

1.
Dijkers
MPJM.
Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings
.
J Rehabil Res Dev
.
2005
;
42
(
suppl 1
):
87
110
.
2.
Moons
P
,
Budts
W
,
De Geest
S.
Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches
.
Int J Nurs Stud
.
2006
;
43
(
7
):
891
901
.
3.
World Health Organization
.
WHOQOL: Measuring Quality of Life 2019
. .
4.
Miller
LV.
Conditions in occupational therapy
.
In
:
Atchison
B
,
Dirette
D
,
eds.
Spinal cord injury
. 3rd ed.
Philadelphia
:
Lippincott, Wilkins & Williams
;
2007
:
311
339
.
5.
Hitzig
SL
,
Noreau
L
,
Balioussis
C
,
Routhier
F
,
Kairy
D
,
Craven
BC.
The development of the spinal cord injury participation and quality of life (PAR-QoL) tool-kit
.
Disabil Rehabil
.
2013
;
35
(
16
):
1408
1414
.
6.
Anson
CA
,
Shepherd
C.
Incidence of secondary complications in spinal cord injury
.
Int J Rehabil Res
.
1996
;
19
(
1
):
55
66
.
7.
Haisma
JA
,
van der Woude
LH
,
Stam
HJ
,
et al
.
Complications following spinal cord injury: Occurrence and risk factors in a longitudinal study during and after inpatient rehabilitation
.
J Rehabil Med
.
2007
;
39
(
5
):
393
398
.
8.
Hitzig
SL
,
Campbell
KA
,
McGillivray
CF
,
Boschen
KA
,
Craven
BC.
Understanding age effects associated with changes in secondary health conditions in a Canadian spinal cord injury cohort
.
Spinal Cord
.
2010
;
48
(
4
):
330
335
.
9.
Goldberg
D
,
McDowell
I
,
Newell
C.
Measuring Health: A Guide to Rating Scales and Questionnaires
. 2nd ed.
New York
:
Oxford University Press
;
1996
:
259
271
.
10.
Tait
R
,
Pollard
C
,
Margolis
R
,
Duckro
P
,
Krause
S.
Pain disability index: Psychometric and validity data
.
Arch Phys Med Rehabil
.
1987
;
68
(
7
):
438
441
.
11.
Dazord
A
,
Leizorovicz
A
,
Gerin
P
,
Boissel
JP.
Quality of life of patients during treatment of type I diabetes. Importance of a questionaire focused on the subjective quality of life
.
Diabet Metabol
.
1994
;
20
(
5
):
465
472
.
12.
Uebersax
JS
,
Wyman
JF
,
Shumaker
SA
,
McClish
DK
,
Fantl
JA.
Short forms to assess life quality and symptom distress for urinary incontinence in women: The Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Continence Program for Women Research Group
.
Neurourol Urodyn
.
1995
;
14
(
2
):
131
139
.
13.
Jang
Y
,
Hsieh
CL
,
Wang
YH
,
Wu
YH.
A validity study of the WHOQOL-BREF assessment in persons with traumatic spinal cord injury
.
Arch Phys Med Rehabil
.
2004
;
85
(
11
):
1890
1895
.
14.
Balioussis
C
,
Hitzig
SL
,
Flett
H
,
Noreau
L
,
Craven
BC.
Identifying and classifying quality of life tools for assessing spasticity after spinal cord injury
.
Top Spinal Cord Inj Rehabil
.
2014
;
20
(
3
):
208
224
.
15.
Best
KL
,
Ethans
K
,
Craven
BC
,
Noreau
L
,
Hitzig
SL.
Identifying and classifying quality of life tools for neurogenic bladder function after spinal cord injury: A systematic review
.
J Spinal Cord Med
.
2017
;
40
(
5
):
505
529
.
16.
Choukou
M-A
,
Best
KL
,
Craven
BC
,
Hitzig
SL.
Identifying and classifying quality of life tools for assessing neurogenic bowel dysfunction after spinal cord injury
.
Top Spinal Cord Inj Rehabil
.
2019
;
25
(
1
):
1
22
.
17.
Canadian Institutes of Health Research
.
Knowledge translation
. .
18.
Graham
ID
,
Logan
J
,
Harrison
MB
,
et al
.
Lost in knowledge translation: Time for a map?
J Contin Educ Health Prof
.
2006
;
26
(
1
):
13
24
.
19.
Jette
DU
,
Bacon
K
,
Batty
C
,
et al
.
Evidence-based practice: Beliefs, attitudes, knowledge, and behaviors of physical therapists
.
Phys Ther
.
2003
;
83
(
9
):
786
805
.
20.
Brouwers
M
,
Stacey
D
,
O'Connor
A.
Knowledge creation: Synthesis, tools and products
.
CMAJ
.
2010
;
182
(
2
):
E68
72
.
21.
Duffy
M.
The Internet as a research and dissemination resource
.
Health Promot Int
.
2000
;
15
(
4
):
349
353
.
22.
Benbunan-Fich
R.
Using protocol analysis to evaluate the usability of a commercial web site
.
Info Manage
.
2001
;
39
(
2
):
151
163
.
23.
Flavián
C
,
Guinalíu
M
,
Gurrea
R.
The role played by perceived usability, satisfaction and consumer trust on website loyalty
.
Info Manage
2006
;
43
(
1
):
1
14
.
24.
Davis
FD.
A Technology Acceptance Model for empirically testing new end-user information systemes: Theory and results [thesis]
.
Massachussetts Institute of Technology: Sloan School of Management, Massachussetts Institute of Technology; 1985
.
25.
Davis
FD
,
Bagozzi
RP
,
Warshaw
PR.
User acceptance of computer technology: A comparison of two theoretical models
.
Manage Sci
.
1989
;
35
(
8
):
982
1003
.
26.
Gao
Y.
Applying the Technology Acceptance Model (TAM) to educational hypermedia: A field study
.
J Educ Multimed Hypermed
.
2005
;
14
(
3
):
237
247
.
27.
Moore
JL
,
Raad
J
,
Ehrlich-Jones
L
,
Heinemann
AW.
Development and use of a knowledge translation tool: The rehabilitation measures database
.
Arch Phys Med Rehabil
.
2014
;
95
(
1
):
197
202
.
28.
Flynn
S
,
Hebert
P
,
Korenstein
D
,
Ryan
M
,
Jordan
WB
,
Keyhani
S.
Leveraging social media to promote evidence-based continuing medical education
.
PLoS One
.
2017
;
12
(
1
):
e0168962
.
29.
Best
KL
,
Hitzig
SL
,
Kairy
D
,
Noreau
L
,
Routhier
F.
Theoretical considerations on quality of life outcome tool selection for spinal cord injury
.
Paper presented at: Praxis Bridging the Gaps: From SCI Research to Improved Outcomes
;
April 25–27, 2016
;
Vancouver, BC
.
30.
Chan
CWL
,
Miller
WC
,
Querée
M
,
Noonan
VK
,
Wolfe
DL
,
the SCIRE Research Team
.
The development of an outcome measures toolkit for spinal cord injury rehabilitation
.
Can J Occup Ther
.
2017
;
84
(
2
):
119
129
.
31.
Health Economics Research Group, Office of Health Economics, RAND Europe
.
Medical research: What's It Worth? Estimating the Economic Benefits From Medical Research in the UK
.
London, UK
:
Evaluation Forum
;
2008
.
32.
Schmettow
M.
Sample size in usability studies
.
Commun ACM
.
2002
;
55
(
4
):
64
70
.
33.
Fan
W
,
Yan
Z.
Factors affecting response rates of the web survey: A systematic review
.
Comput Hum Behav
.
2010
;
26
(
2
):
132
139
.

APPENDIX

SURVEY

The following survey asks about your experience with the PAR-QoL website.

  • 1.

    What is your age?

    • □ 18–25 □ 26–30 □ 36–40 □ 41–45 □ 46–50

    • □ 51–55 □ 56–59 □ 60–65 □ Over 65

  • 2.

    Are you: □ male □ female

  • 3.

    What is your professional background?

    • Community Advocate

    • Family member of a person with spinal cord injury

    • Funder/funding agency

    • Government

    • Health researcher/Academic

    • Nurse

    • Occupational therapist

    • Person with a spinal cord injury

    • Physician

    • Physiotherapist/physical therapist

    • Psychologist/neuro-psychologist

    • Social Worker

    • Student

    • Therapeutic Recreation Staff

    • Other: please specify

  • 4.

    Where is your primary site of work?

    • Acute care teaching/research hospital

    • Acute care community hospital

    • Community hospital/health centre

    • Rehabilitation facility

    • Long term care facility

    • University

    • Government ministry/department

    • Community advocacy organization

    • Other: please specify

  • 5.

    Which country do you live in?

  • 6.

    What is your main reason for visiting the PAR-QoL website?

  • 7.

    What is your experience with research?

    • I have not been trained to conduct research

    • I have some training as a researcher

    • I have considerable research experience

If you do NOT currently use the tools/resources on the PAR-QoL website, please answer the questions 8–9 (if you do use the PAR-QoL tools/resources please proceed to the following section).

Please select the response option that most closely reflects your view.

  • 8.

    I intend to use the tools or resources available on the PAR-QoL website?

    • □ Yes □ No

  • 9.

    (If answered yes) Indicate how you plan on using the tools or resources (check all that apply):

    • In my clinical practice (e.g. to assess patients)

    • For program evaluation

    • To identify instruments for a research study

    • To stay informed about the spinal cord injury community

    • Other (please specify): _______________________

Please select the response option that most closely reflects your view.

Perceived Ease of Use

  • 1.

    It was easy to learn to use the PAR-QoL website

  • 2.

    The PAR-QoL website is easy to navigate

  • 3.

    It was easy to find the information I wanted on this website

Perceived Usefulness

  • 4.

    Using the PAR-QoL website has enabled me to find research tools quickly

  • 5.

    Using the PAR-QoL website has enabled me to find research tools that are appropriate for my work

  • 6.

    Using the PAR-QoL website has enabled me to find research instruments I can trust

  • 7.

    Using the PAR-QoL has enhanced my ability to communicate with the wider spinal cord injury community.

  • 8.

    The PAR-QoL website has made it easier for me to keep up-to-date with spinal cord injury news and events

  • 9.

    The PAR-QoL website has been useful in my work.

  • 10.

    The PAR-QoL website is an improvement over other ways/methods of finding research instruments related to spinal cord injury

  • 11.

    It important to me to have access to the PAR-QoL website.

  • 12.

    I would recommend the PAR-QoL website to others.

Behavioral practices

  • 13.

    I use the PAR-QoL site to find instruments for my work

  • 14.

    I use the PAR-QoL site to communicate with colleagues and/or experts in the field of spinal cord injury

  • 15.

    I use the PAR-QoL site to keep up to date with events/news in SCI

Actual Use

  • 16.

    Approximately how many times have you used the PAR-QoL in the past 3 months?

Overall, how much use have you made of the following features of the PAR-QoL website?

Where 0 = not used at all 1 = occasional use 2= regular use

  • 17.

    Locating instruments related to spinal cord injury

  • 18.

    Reading the blog

  • 19.

    Communicating with peers/colleagues on the forum

  • 20.

    Ask an expert

  • 21.

    Keeping up to date with news/events in SCI research and practice

  • 22.

    The newsletter

Open ended items

  • 23.

    We are very interested in hearing about how you are using the PAR-QoL website in your work. Can you please give us an example?

  • 24.

    What part(s) of the PAR-QoL site has been most useful to you? Please explain.

  • 25.

    What aspect or part(s) of the PAR-QoL has been problematic or should be improved?

  • 26.

    What could we do to make the site more useful to you?

Other comments:

When you are finished with the survey, please click here to submit your responses

And, if you would like to tell us more about how you are using the website in your work and you are interested in participating in a short telephone interview, please contact x at x Thank you so much for your time!