Survey data on the quality of life of consumers fitted with osseointegrated fixation and bone-anchored limb prostheses provided by government organization

The data in this paper are related to the research article entitled “Development of a government continuous quality improvement procedure for assessing the provision of bone anchored limb prosthesis: A process re-design descriptive study” (Frossard et al., Canadian Prosthetics & Orthotics Journal, 2018. 1(2). p. 1–14). This article contains quality of life data experienced by individuals before and after implantation of a press-fit or screw-type osseointegrated fixation when fitted with conventional socket-suspended and bone-anchored limb prosthesis, respectively. This specifically-designed survey was developed and administered by Queensland Artificial Limb Services (QALS), an Australian State government organization. It was an integrated part of QALS′ continuous quality improvement procedure for assessing the provision of bone-anchored prosthesis. A total of 12 out of the 65 consumers completed to the survey, giving a return rate of 18%. This benchmark information can contribute to inform the design of (A) other patients' experience surveys including those built-in governmental continuous quality improvement procedure as well as (B) clinical trials looking at the overall effects of surgical implantation of ossoeintegrated fixation on patients' quality of life. Online repository contains the files: https://data.mendeley.com/datasets/bkbxxmrhfh/1.


a b s t r a c t
The data in this paper are related to the research article entitled "Development of a government continuous quality improvement procedure for assessing the provision of bone anchored limb prosthesis: A process re-design descriptive study" (Frossard et (2). p. 1e14). This article contains quality of life data experienced by individuals before and after implantation of a press-fit or screw-type osseointegrated fixation when fitted with conventional socketsuspended and bone-anchored limb prosthesis, respectively. This specifically-designed survey was developed and administered by Queensland Artificial Limb Services (QALS), an Australian State government organization. It was an integrated part of QALS 0 continuous quality improvement procedure for assessing the provision of bone-anchored prosthesis. A total of 12 out of the 65 consumers completed to the survey, giving a return rate of 18%. This benchmark information can contribute to inform the design of (A) other patients' experience surveys including those built-in governmental continuous quality improvement procedure as well as (B) clinical trials looking at the overall effects of surgical implantation of ossoeintegrated fixation on patients' quality of life. A total of 65 consumers fitted with at least one osseointegrated fixation and boneanchored limb prosthesis between 01/2011 and 06/2019 were asked to participate in this survey. A total of 12 consumers fitted with press-fit or screw-type osseointegration fixation between 07/2012 and 04/2019 responded to the survey, giving a return rate of 18%.

Experimental features
This specifically-designed survey was developed and administered by Queensland Artificial Limb Services (QALS), an Australian State government organization, as an integrated part of its continuous quality improvement procedure for assessing the provision of bone-anchored prosthesis. This 25-question survey was designed to assess change in quality of life experienced by QALS 0 consumers before and after implantation of a press-fit or screw-type osseointegrated fixation when fitted with conventional socket-suspended and bone-anchored limb prostheses, respectively. The eligible consumers were asked to participate in this study over the phone by a QALS 0 agent. Consumers could choose if they preferred receiving the survey by email or post. Data source location Brisbane, Queensland, Australia Data accessibility Data is with this article. Transparency data including the actual survey associated with this article can be found in the online version at https://data.mendeley.com/datasets/ bkbxxmrhfh/1 Related research article Frossard, L., Ferrada, L., Quincey, T., Burkett, B., and Berg, D., Development of a government continuous quality improvement procedure for assessing the provision of bone anchored limb prosthesis: A process re-design descriptive study. Canadian Prosthetics & Orthotics Journal, 2018. 1 (2). p. 1e14 [1].

Value of the Data
The survey data presented here provided an initial appraisal of the change in quality of life following surgical implantation of osseointegrated fixation, enabling direct skeletal attachment of the prosthesis, experienced by consumers supported by an Australian State government [1]. This specifically-designed survey focused on multiple facets of quality of life deriving essentially from safety and efficacy of the procedure as well as overall satisfaction with prosthesis [2e4]. This survey allowed comparing the baseline quality of life before the treatment when fitted with socket-suspended prosthesis with quality of life after treatment when fitted with bone-anchored prosthesis. This benchmark information could be used in future comparative studies or meta-analyses involving other cohorts of individuals fitted with socket-suspended or boneanchored prostheses, respectively [5e7]. This new insight into the quality of life reported by consumers fitted with bone-anchored prosthesis provided by a governmental organization can contribute to inform the design of specific and more advanced quality of life surveys that could be administered by other government organizations supporting provision of bone-anchored prosthesis. This information will be particularly valuable to those who have limited opportunities to administer standard generic healthrelated quality of life surveys (e.g., SF-36) as part of their continuous quality improvement of procedure [1]. This quality of life data can also be valuable for researchers designing observational studies and clinical trials looking at the overall effects of particular interventions (e.g., design of osseointegrated fixation, effects of bone-anchored prosthesis components) on patients' satisfaction and quality of life. For instance, the magnitude of the difference between quality of life experienced with socket-suspended and bone-anchored prosthesis can informed the sample size required to achieve sufficient statistical power during the analytical planning stage. Table 1 presented the three levels of focus, actual question and type of answer for each of the 25 questions focusing on quality of life of consumers fitted with socket-suspended and bone-anchored prosthesis provided by Queensland Artificial Limb Services (QALS) before and after implantation of osseointegrated fixation. Table 2 presented the case-mix profiles including demographics, amputation, access to care and funder information for the QALS' consumers fitted with bone-anchored prosthesis who were asked to participate in the study (N ¼ 65) and responded (N ¼ 12).

Data
Figs. 1e7 provided the baseline outcomes for the seven questions related to the quality of life of QALS' consumers provided with socket-suspended prosthesis before implantation of osseointegrated fixation focusing on efficacy (i.e., Q8, Q9, Q10, Q11), experience (i.e., Q12) and knowledge of the osseointegration treatment (i.e., Q2, Q3).
Figs. 8e24 provided the outcomes for the 17 questions related to the quality of life of QALS' consumers provided with bone-anchored prosthesis after implantation of osseointegrated fixation Table 1 Three levels of focus, actual question and types of answer for each of the 25 questions in initial survey focusing on quality of life of consumers socket-suspended prosthesis (Items 1 to 7) and bone-anchored prosthesis (Items 8 to 24) provided by Queensland Artificial Limb Services before and after implantation of osseointegrated fixation, respectively.

Design of survey
The initial survey focusing on quality of life of consumers with socket-suspended prosthesis or bone-anchored prosthesis provided by Queensland Artificial Limb Services included 25 questions, as described in Table 1.

Population
The Queensland Artificial Limb Services asked 65 consumers with osseointegrated fixation and bone-anchored prosthesis to complete the survey as presented in Table 2.

Quality of life with socket-suspended prosthesis before treatment
The baseline outcomes for the seven questions related to the quality of life of QALS' consumers provided with socket-suspended prosthesis before implantation of osseointegrated fixation focusing on efficacy (i.e., Q8, Q9, Q10, Q11), experience (i.e., Q12) and knowledge of the osseointegration treatment (i.e., Q2, Q3) are presented in Figs. 1e7.

General comments
The general comments provided by consumers (i.e., Q25) are summarized in Fig. 25. 6.1. Experimental design, materials, and methods

Participants
This study involved all of 65 QALS 0 consumers fitted with at least one bone-anchored prosthesis after implantation of press-fit (N ¼ 64) or screw-type (N ¼ 1) osseointegration fixation between 01/2011 and 06/2019. This cohort represented circa 16% and 7% of existing population estimated at 400  in Australia and 950 worldwide, respectively [1]. A total of 12 out of 65 consumers fitted with boneanchored prosthesis between 07/2012 and 04/2019 responded to the survey, giving a return rate of 18%. The individual question's response rate corresponded to the number of responses for a given question over 12 respondents.

Survey
This specifically-designed survey data on the quality of life was administered by Queensland Artificial Limb Services (QALS), an Australian State government organization, as an integrated part of its continuous quality improvement procedure for assessing the provision of bone-anchored prosthesis [1,8e10]. This survey was designed to assess change in quality of life experienced by QALS's consumers before and after implantation of a press-fit or screw-type osseointegrated fixation when fitted with conventional socket-suspended and bone-anchored limb prosthesis, respectively [3,4,11].
First, participants were required to indicate their name, address, date of birth and email. Then, participants answered 25 questions organized around the three following sections:  The 65 eligible consumers were asked to participate in this study over the phone by a QALS' agent. Consumers could choose if they preferred receiving the survey by email or by post with pre-paid return envelope.
Answers to the 3 (12%) Likert-type scale questions were expressed as percentage of participants in each of the 10 levels between 0 for "not satisfied" and 10 for "very satisfied" (i.e., Q7, Q12, Q24).
Answers to the 3 (12%) Likert-type scale questions were expressed as percentage of participants in each of the 10 levels between 0 for "not satisfied" and 10 for "very satisfied" (i.e., Q7, Q12, Q24).

Data analysis
Only aggregated data was presented in this study. Exploration of more detailed analysis revealed that proportionate and disproportionate stratification sampling were unattainable given the diversity of case-mix and the small number of respondents.