Disability and Rehabilitation

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Psychometrically validated questionnaires to

measure the effects and benefits/barriers to
physical exercise in hemodialysis patients: a
systematic review

Marcieli A. Martins, Gabriela L. M. Ghisi, Kenia B. da Silva, Gabriela

Leopoldino, Maureen Pakosh & Daiana C. Bundchen

To cite this article: Marcieli A. Martins, Gabriela L. M. Ghisi, Kenia B. da Silva, Gabriela
Leopoldino, Maureen Pakosh & Daiana C. Bundchen (2023): Psychometrically validated
questionnaires to measure the effects and benefits/barriers to physical exercise
in hemodialysis patients: a systematic review, Disability and Rehabilitation, DOI:
10.1080/09638288.2023.2198258
To link to this article: https://doi.org/10.1080/09638288.2023.2198258

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DISABILITY AND REHABILITATION
https://doi.org/10.1080/09638288.2023.2198258

ORIGINAL ARTICLE

Psychometrically validated questionnaires to measure the effects and

benefits/barriers to physical exercise in hemodialysis patients: a systematic
review
Marcieli A. Martinsa , Gabriela L. M. Ghisib , Kenia B. da Silvaa , Gabriela Leopoldinoc , Maureen
Pakoshd and Daiana C. Bundchena,e
a
Postgraduate Program in Rehabilitation Sciences, Federal University of Santa Catarina, Araranguá, Brazil; bCardiovascular Prevention and
Rehabilitation Program, Toronto Rehabilitation Institute, University Health Network, Toronto, Canada; cPostgraduate Program in Cardiology, Federal
University of Rio Grande do Sul, Porto Alegre, Brazil; dLibrary and Information Services, University Health Network, Toronto, Canada; eDepartment
for Health Sciences, Federal University of Santa Catarina, Araranguá, Brazil

ABSTRACT ARTICLE HISTORY

Purpose:  To provide a critical assessment, summarize, and synthesize the evidence from studies Received 11 September 2022
using psychometrically validated questionnaires to assess the effects and benefits/barriers of physical Revised 5 February 2023
exercise in hemodialysis patients. Accepted 25 March 2023
Methods:  The search was performed on six electronic databases. It was conducted following the KEYWORDS
PRISMA statement and the PICO framework. The methodological quality was assessed using the Surveys and questionnaires;
MMAT. Were used the quality criteria for psychometric properties developed by Terwee et  al. psychometrics;
Results: Overall, 70 studies were included, and 39 questionnaires identified, evaluating 13 outcomes. exercise training;
The quality of the psychometric properties of the questionnaires was not always described; only 13 perception;
presented positive ratings on > =6/9 properties. The most assessed measure was criterion validity, end-stage renal disease
and the least assessed criteria was responsiveness. The most outcome measured by these questionnaires
was quality of life using SF-36, followed by psychological health using the BDI. The DPEBBS was the
only instrument identified that assessed the benefits and barriers of exercise.
Conclusion:  Quality of life and depression were the most frequent outcomes. Other measures
contemplating physical, mental, cognitive performance, and especially of the perceptions benefits
and barriers to exercise should be further investigated. We have clearly identified the need for more
studies evaluating psychometric measures that have not been tested satisfactorily or hardly been
tested at all.

Introduction disease be advised and encouraged by the dialysis team to

increase their levels of physical activity and that this practice be
End-stage renal disease is a global concern due to rising health- integrated into routine care plans [1]. Several consistent studies
care costs [1–3]. Up to 90% of patients diagnosed with this con- showed that physical exercise is a safe intervention for hemodi-
dition receive hemodialysis [4]. These patients experience stress alysis patients and is associated with a number of benefits, includ-
related to extreme therapeutic actions, such as dialysis, and under- ing improvements in physical and psychosocial variables, muscle
standing the severity of their disease [5]. Their mental-social per- health, and quality of life [11–13].
formance is significantly affected due to prolonged illness, so they However, despite the well-established benefits, only 6% of
can suffer from mental disorders such as anxiety and depression patients undergoing dialysis are engaged in physical activity [14].
[5] and disorders in cognitive performance [6] and sleep [7]. This In this context, the investigation of perceived benefits and barriers
is pushing experts to identify newer approaches of care for to exercise has become an important factor to improve adherence
end-stage renal disease patients [1]. Furthermore, there is a sub- to exercise programs [15], as well as the investigation of effects
stantial and sustained negative impact between chronic kidney of different exercise modalities—adapted as needed for different
disease, dialysis treatment, and comorbid physical function. In patient groups [16] – showing the feasibility and efficacy of exer-
fact, reduced physical function has been shown to be associated cise as a therapeutic intervention for this population.
with high mortality in this population [8]. Previous research has Questionnaires are considered cost-effective measures and
reported that 57% of hemodialysis patients have a low level of offer an objective means of collecting information from large
physical activity [9] and are 24% less active than healthy individ- samples [17]. These instruments are widely used to investigate
uals [10]. different outcomes in patients undergoing hemodialysis [18];
The National Kidney Disease Outcomes Quality Initiative guide- however, there is a lack of information about which variables are
lines formally recommends that patients with end-stage renal effectively investigated and whether the questionnaires are

CONTACT Marcieli A. Martins marcieliamartins@hotmail.com Postgraduate Program in Rehabilitation Sciences, Federal University of Santa Catarina,
Araranguá 88906-072, Brazil
Supplemental data for this article can be accessed online at https://doi.org/10.1080/09638288.2023.2198258.
© 2023 Informa UK Limited, trading as Taylor & Francis Group
2 M. A. MARTINS ET AL.

psychometrically validated. In this context, the objective of this assessment (title and abstract) with an inter-rater agreement of
systematic review was to provide a critical assessment, summarize, 96.3%. Discrepancies were resolved by discussion and consensus,
and synthesize the evidence from studies using psychometrically and by consulting with a third author (GG). Full-text of possible
validated questionnaires to assess the effects and benefits/barriers eligible articles were obtained and assessed independently for
of physical exercise in patients undergoing hemodialysis. Thus, eligibility by the two reviewers. Data extraction of included articles
we have also described the characteristics and effects of exercise was performed by one author (MM) and confirmed by a second
programs based on the results of the identified questionnaires. author (DB). For each primary study the following items were
Since little evidence is available to guide clinicians and research- collected: study information (author, year of publication, country,
ers during questionnaire selection, we hope this review will help study design, sample size); participants’ characteristics (age, sex,
to identify instruments that are reliable, valid, and structurally time on dialysis); exercise program’ characteristics (delivery, modal-
adequate to measure important outcomes in hemodialysis ity, period, duration, frequency, intensity); information about ques-
patients. tionnaires (outcome measured, format, number of items) and
description of effects on outcomes for each questionnaire
evaluated.
Methods
This systematic review was prospectively registered in the Quality appraisal
International Prospective Register of Systematic Reviews
(PROSPERO: CRD42022336226). The review was conducted in The process of assessing the quality consisted of two distinct
accordance with the Preferred Reporting Items for Systematic steps. Firstly, the methodological quality of the studies was
Reviews and Meta-Analyses (PRISMA) 2020 guidelines [19]. The assessed by applying the Mixed Methods Appraisal Tool (MMAT)
PRISMA checklist is available in Supplemental Appendix 1. [20]. The MMAT was used to assess the methodological quality
of the studies and is applicable to multiple designs (i.e., random-
ized, non-randomized, descriptive and mixed methods). For each
study design, there are 5 items that can be appraised as “yes,”
Eligibility criteria
“no,” and “unclear.” Two review authors (MM and GL) independently
The search strategy was developed in collaboration with an evaluated each included study, with an inter-rater agreement of
Information Specialist (MP) and organized according to the PICO 82.8%. Discrepancies between the two authors were resolved by
framework as following: (1) Population: adults (≥18 years old) with consensus or, where agreement could not be reached, a consul-
end-stage renal disease undergoing hemodialysis, regardless of tation was held with another author (GG).
sex; (2) Intervention: any type of exercise intervention regardless For the evaluation of the quality of psychometric properties
of intensity, frequency, and duration of each exercise session; and/ of identified questionnaires, the quality criteria developed by
or that undergoing questionnaires used to assess the effects of Terwee et  al. [17] was applied. These criteria refer to content
and benefits/barriers to physical exercise in hemodialysis patients; validity, internal consistency, criterion validity, construct validity,
(3) Comparisons: usual care, sham (e.g., stretching) or crossover reproducibility (agreement and reliability), responsiveness, floor
exercises; (4) Outcomes: psychometric properties of validated and ceiling effects, and interpretability. Each of these psychometric
questionnaires used to assess the effects of and benefits/barriers properties were rated by one item as either positive (+), interme-
to physical exercise in adults undergoing hemodialysis; Inclusion/ diate (?), negative (–), or no information available (0) [17]. For
Exclusion Criteria—Study Design: randomized clinical trials, non- purposes of interpretation, any response other than (0) was con-
randomized controlled clinical trials, before-and-after studies and sidered a positive result. Instruments that evaluated more psy-
cross-sectional study. Narrative, scope and systematic reviews were chometric properties indicate that they had a more rigorous
not considered. Pilot studies, case reports, commentaries and validation process.
feasibility studies were excluded. Non-peer-reviewed (i.e., grey)
literature was not included. Studies published in languages other
than English, Portuguese or Spanish were excluded. No publication Results
year restrictions were imposed.
Study selection

Information sources and research strategy Of the 1061 unique records identified from the database searches,
70 studies met the eligibility criteria and were included in the
The following databases were searched from their inception to analysis. Figure 1 presents the PRISMA 2020 flow diagram with
October 2021: APA PsycInfo (Ovid), CINAHL Complete (EBSCOhost), the different stages of study selection including the reasons for
Embase (Ovid), Emcare Nursing (Ovid), Medline ALL (Ovid; includes exclusion. Of these, 65 (92.8%) included studies that evaluated
PubMed non-Medline records), and Web of Science Core Collection the effects of physical exercise, 4 (5.7%) studies evaluated the
(Clarivate). Subject headings as appropriate for each database, benefits/barriers to physical exercise, and 1 (1.4%) study evaluated
and free-text terms relevant to the topical concepts, were utilized. both the effects of and benefits/barriers of physical exercise, com-
The Medline search strategy is shown in the Supplemental prising a total of 4775 participants from 21 countries.
Appendix 2.

Characteristics of included studies

Selection, extraction, synthesis and analysis of data
Table 1 describes the outcomes evaluated, the number of studies
All extracted materials were imported into the Mendeley Reference that evaluated each outcome and the validated questionnaire
Management Software. After training and calibration, two authors used to assess these outcomes. The most common outcome eval-
(MM and DB) independently performed the first eligibility uated was quality of life (n = 52) [16,18,21–70] and The Short
 PSYCHOMETRICALLY VALIDATED QUESTIONNAIRES IN HEMODIALYSIS PATIENTS 3

Figure 1. The PRISMA 2020 flow diagram.

Form-36 questionnaire (SF-36) was the most used questionnaire physical exercise and was from 107 to 1022 participants for the
for measurement of this outcome (n = 32). Psychological health studies that evaluated the benefits and barriers to physical exercise
(depression, anxiety, stress, psychiatric problems) was assessed in in hemodialysis patients. The range age of participants varied from
15 studies [6,18,23,28,29,38,44,50,56,61,65,71–74], with the Beck 18 to 88 years. In most of the studies, there was a male predomi-
Depression Inventory (BDI) being the most common measure to nance. In addition, most of these studies were performed by
assess this outcome (n = 11). Other outcomes evaluated were the authors from Brazil (n = 14; 20%) and Iran (n = 13; 18.5%) published
following: benefits and barriers (n = 5) [15,21,75–77], fatigue (n = 4) from 1997 to 2021. The characteristics of the included studies are
[18,26,78,79], sleep quality (n = 4) [7,18,80,81], cognitive function summarized in Supplemental Appendix 3.
(n = 3) [6,18,81], self-efficacy (n = 2) [78,82], and health behaviors
(n = 2) [83,84]. Sleepiness status [18], insomnia [6], fear of falling
[24], perceptions of physical activity [85] and perceptions of pain Quality assessment of the included studies
[18] were assessed in one study each.
Of the included studies, 39 (55.7%) [6,7,15,16,23,24,26,27,29,30,32– The quality of each study using the MMAT is also shown in
34,36–40,44,47,49,52,54,59,64,65,67–69,72–74,78,79,81–85] were Supplementary Appendix 4. Overall, 13 (18.5%) [15,21,23,26,27,3
randomized controlled trials (RCTs). The remaining 31 were non- 0,38,59,64,67,75,77,85] studies presented a score of 5/5, most
randomized clinical trials (n = 10, 14.2%) [31,45,46,56,57,61,62,66,70 studies (n = 35, 50.0%) [16,18,22,25,31,32,35,39,41–43,47–50,52–
,71], clinical trials (before and after study) (n = 17, 24.2%) 58,60–63,66,69–71,74,76,78,82,83] scored 4/5, 14 (20.0%)
[18,22,25,28,35,41–43,48,50,51,53,55,58,60,63,80] and cross-sectional [6,7,24,28,29,34,44–46,65,68,72,79,84] studies scored 3/5, and 6
(n = 4, 5.7%) [21,75–77] in design. The sample size varied from 10 (8.5%) [36,37,51,73,80,81] and 2 (2.8%) [33,40] studies scored 2/5
to 243 participants for the studies that evaluated the effects of and 1/5, respectively.
Table 1. Outcomes, number of studies assessing this outcome, number and name of validated questionnaires used to assess this outcomes and type of study (n = 70).

4
Type of Study
Clinical
Number of studies Trial
assessing this (before and Cross-sectional
Outcome outcome Number and name(s) of validated questionnaire(s) used to assess this outcome RCT NonRandomized after study) studies References
Quality of life 52 11 26 9 16 1 [16,18,21–70]
Kidney Disease Quality of Life (KDQOL) Scale (3 studies)
Kidney Disease Quality of Life Short Form (KDQOL-SF) (10 studies)
M. A. MARTINS ET AL.

Missoula-Vitas Quality of Life Index version-15R (MVQOLI) (1 study)

The Short Form-36 questionnaire (SF-36) (32 studies)
The Short Form-12 questionnaire (SF-12) (1 study)
The Short Form-8 questionnaire (SF-8) (1 study)
The Kidney Disease Questionnaire (KDQ) (1 study)
World Health Organization quality of life assessment (WHOQOL) (1 study)
EQ-5D (3 studies)
Quality of Life Index (QLI) (2 studies)
The Scale of Life Satisfaction (SLS) (1 study)
Psychological Health 15 7 7 5 3 0 [6,18,23,28,29,38,44,
(Depression, Hospital Anxiety and Depression Scale (HADS) (2 studies) 50,56,61,65,71–74]
Anxiety, Stress, Zung Self-Rating Depression Scale (ZDS) (1 study)
Psychiatric Beck Depression Inventory (BDI) (11)
Problems) Center for Epidemiological Scale-Depression (CES-D) (2 studies)
Patient Health Questionnaire-9 (PHQ-9) (1 study)
State-Trait Anxiety Inventory (STAI) (1 study)
Neuropsychiatric Inventory-Brief Questionnaire Form (NPI-Q) (1 study)
Benefits and Barriers 5 1 1 0 4 0 [15,21,75–77]
Dialysis patient-perceived Exercise Benefits and Barriers Scale (DPEBBS) (5 studies)
Fatigue 4 4 3 0 1 0 [18,26,78,79]
Fatigue Severity Scale (FSS) (2 studies)
Multidimensional Fatigue Inventory (MFI) (2 studies)
Brief Fatigue Inventory (BFI) (1 study)
Hemodialysis-related Fatigue Scale (HRFS) (1 study)
Cognitive Function 3 4 2 0 1 0 [6,18,81]
Mini Mental State Examination (MMSE) (2 studies)
Japanese version of the Montreal Cognitive Assessment (MoCA-J) (1 study)
Symbol Digit Test (1 study)
Trail Making Test–B (TMT-B) (1 study)
Sleep Quality 4 1 1 0 3 0 [7,18,80,81]
The Pittsburgh Sleep Quality Index (PSQI) (4 studies)
Sleepiness Status 1 1 0 0 1 0 [18]
Epworth Sleepiness Status (ESS) (1 study)
Insomnia 1 1 0 1 0 0 [6]
Athens Insomnia Scale (AIS) (1 study)
Self-efficacy 2 3 2 0 0 0 [78,82]
Exercise Self-Efficacy Scale (ESES) (1 study)
Chronic Disease Self-Efficacy Scale (CDSES) (1 study)
Sherer General Self-Efficacy Scale (SGSES) (1 study)
Health Behaviors 2 2 2 0 0 0 [83,84]
General Health Questionnaire-28 (GHQ-28) (1 study)
Health Promoting Lifestyle Profile II (HPLP-II) (1 study)
Fear of Falling 1 1 1 0 0 0 [24]
Tinetti Falls Efficacy Scale (Tinetti FES) (1 study)
Perceptions about 1 2 1 0 0 0 [85]
physical activity Decision Balance Scale (DB) (1 study)
Outcome Expectations for Exercise Scale (OEE) (1 study)
Pain Perception 1 1 0 0 1 0 [18]
Fibromyalgia Impact Questionnaire (FIQ) (1 study)
RCT: randomized controlled trial.
 PSYCHOMETRICALLY VALIDATED QUESTIONNAIRES IN HEMODIALYSIS PATIENTS 5

Measurement properties 68.7%) [18,23,28,29,44,50,56,65,71–73] showed a significant reduc-

tion in depressive symptoms. Regarding the investigation on the
Descriptive data of the measurement properties of the 39 ques- effect of exercise on fatigue, all studies (n = 4, 100%) [18,26,78,79]
tionnaires that assessed effects (n = 66) of and benefits/barriers showed significant reduction of this outcome. Four studies eval-
(n = 5) to physical exercise in hemodialysis patients are shown in uated the effect of exercise on sleep quality, all using the same
Table 2. Out of a total of 9 possible measurements, the question- instrument (The PSQI). Of these, three (75%) [7,80,81] showed a
naires that presented the highest evaluation related to the psy- significant decrease in scores, which indicates an improvement in
chometric properties evaluated (i.e., psychometric properties were sleep quality. Three studies [6,18,81] applied different question-
rated positive) were the Short Form-36 questionnaire (SF-36) and naires to investigate cognitive function, in one [81] study there
the Hemodialysis-related Fatigue Scale (HRFS) with 9 items scored was an effect of exercise in this outcome. See Supplemental
positive, followed by the Short Form-12 questionnaire (SF-12), the Appendix 3 for more information about the effects of physical
Beck Depression Inventory (BDI) and the Epworth Sleepiness Scale exercise found from the application of the questionnaires.
(ESS) with 8 items. The Short Form-8 questionnaire (SF-8), the Regarding the results of the five studies on benefits and bar-
Center for Epidemiological Scale-Depression (CES-D), the Patient riers to physical exercise using the DPEBBS, the data were very
Health Questionnaire-9 (PHQ-9), the Japanese version of the heterogeneous. In summary, the main benefits of exercise per-
Montreal Cognitive Assessment (MoCa-J) and the Athens Insomnia ceived by patients were prevention of muscle loss and improve-
Scale (AIS) scored positive in 7 items. The Dialysis Patient-Perceived ment in mood (n = 3, 60%) [21,76,77], followed by improvement
Exercise Benefits and Barriers Scale (DPEBBS), the Pittsburgh Sleep in self-care skills [76,77], and improvements in quality of life
Quality Index (PSQI), the Decision Balance Scale (DBS), and the [75,77] (n = 2, 40%). On the other hand, tiredness was the most
Outcome Expectations for Exercise Scale (OEES) scored positive cited barrier (n = 4, 80%) [21, 75–77], followed by fatigue in the
in 6 items. The other questionnaires scored positive in equal or lower limbs (n = 3, 60%) [21,76,77]. One study did not describe
lower than 5 items. The most commonly assessed property was the results by specific item but overall there was a greater per-
criterion validity, and the least evaluated was responsiveness. All ception of benefits than barriers [15].
references from the original development and validation of the
included questionnaires are available in Supplemental Appendix 5.

Discussion

Intervention characteristics and outcomes of questionnaires This systematic review sought to critically assess, summarize, and
synthesize the evidence from studies using psychometric vali-
Of the 66 studies that included an intervention, the characteristics dated questionnaires to assess the effects of and benefits/barriers
of these interventions were the following: they were mostly deliv- to physical exercise in hemodialysis patients. To our knowledge,
ery in the intradialytic period (n = 43, 65.1%) [6,7,16,18,22,24– this is the first systematic review that systematically appraises
28,33–35,38,40,41,43,44,46,48,50–59,64,66–72,74,78–81,83], and summarizes the existing evidence on measures on this pop-
followed by delivery in non-dialysis days (n = 9, 13.6%) ulation. We identified 39 questionnaires that assessed 13 different
[23,29,31,32,60,62,73,82,84], prior to dialysis (n = 6, 9%) outcomes with varying psychometric properties. The quality of
[30,36,37,42,61,63], intradialytic + home (n = 4, 6%) [45,46,49,85], the psychometric properties of the identified validated question-
home (n = 1, 1.5%) [80], prior to dialysis + home (n = 1, 1.5%) [15], naires was not always described and only 13 of them presented
and post-dialysis (n = 1, 1.5%) [65]. One study did not report the positive ratings on more or equal than 6/9 properties. The most
delivery period of intervention [40]. Twelve different exercise commonly assessed property measure was criterion validity and
modalities were identified in the included studies, namely aerobic the least assessed criteria was responsiveness.
exercise (n = 25, 37.8%) [7,16,22,24,25,29,31,32,37,40,41,47,48, Quality of life was the most frequent measure investigated
53,65,66,68,69,71,78–83], resistance training ((n = 14, 21.2%) [6,16 in the included studies of this review. In total, 11 different
,26,34,36,42,51,52,54,58,62,64,70,73], combined exercise: aero- instruments to assess this outcome were identified in 52 studies.
bic + resistance training (n = 21, 31.8%) [15,18,23,27,28,30,33,39,43– The assessment of quality of life involves multidimensional mea-
46,49,50,55,56,60,61,67,72,85]/aerobic + resistance training + virtual sures, including physical function, emotional function, social
reality (n = 1, 1.5%) [38]/aerobic + IMT (n = 1, 1.5%) [69]/resistance function, and efficacy of treatment in the patients. Due to the
training + NMES (n = 1, 1.5%) [35], neuromuscular electrical stimu- complexity of the scenario, this becomes an important outcome
lation (NMES) (n = 3, 4.5%) [57,59,68], whole body vibration (n = 1, for patients undergoing hemodialysis, and can justify its exten-
1.5%) [63], pilates (n = 1, 1.5%) [84], and exergame (n = 1, 1.5%) sive research given that it has been shown that patients under-
[74]. For detailed information regarding the intervention charac- going hemodialysis have a worse quality of life than the general
teristics, see Supplemental Appendix 3. population [86], in addition to being a predictor of morbidity
Regarding the effects of physical exercise found from the appli- and mortality for these patients [87]. Despite other quality of
cation of the questionnaires, we will describe the main outcomes life questionnaires being freely available in the literature (e.g.,
below. In summary, 26 randomized clinical trials in which the KDQOL and KDQOL-SF), the SF-36 was the most used question-
quality of life was measured, 13 (n = 50%) [24,27,32,36,39, naire identified in the included studies (i.e., in 34 studies) and
40,49,52,54,59,67–69] showed no significant differences between also the only one that presented positive ratings in all mea-
intervention and control groups. This was regardless of the type surement properties (9/9), being considered reliable, valid, and
of intervention and the instrument used. Ten studies (38.5%) structurally adequate to measure quality of life in hemodialysis
[16,23,26,29,30,34,38,44,47,65] did show significantly improved and patients. This can consolidate and encourage the continuity of
3 (11.5%) [33,37,64] showed no results between groups. The major- the use of this questionnaire for this population. It is important
ity of other study designs showed that exercise had a beneficial to note that although this review has shown that the SF-36 was
effect on quality of life (n = 17, 65.3%) [18,25,31,35,41,43,45,46,50 mostly used, there is no consensus on the standard instrument
,53,55,56,58,60,62,66,70], especially in the physical function to measure quality of life in patients undergoing hemodialy-
domain. Regardless of the study design, most results (n = 11, sis [88].
 6
Table 2. Current evidence of measurement properties of questionnaires assessing effects and barriers/benefits of physical exercise in hemodialysis patients (n = 39).
Assessed Measurement Propertiesa
Floor
and
Number Internal Criterion Construct Reproducibility Reproducibility ceiling
Outcome Abbreviation Full name of questionnaire of items Content validity consistency validity validity Agreement Reliability Responsiveness effect Interpretability
Quality of life KDQOL Kidney Disease Quality of Life Scale 36 ? ? + 0 0 0 0 – +
KDQOL-SF Kidney Disease Quality of Life Short 80 ? ? + 0 0 0 0 – +
Form
M. A. MARTINS ET AL.

MVQOLI Missoula-Vitas Quality of Life Index 15 + + + 0 0 + ? ? ?

version-15R
SF-36 The Short Form-36 questionnaire 36 + + + + + + + ? +
SF-12 The Short Form-12 questionnaire 12 + – + + ? + 0 – +
SF-8 The Short Form-8 questionnaire 8 + + + + 0 0 ? ? +
KDQ Kidney Disease Questionnaire 10 – 0 0 0 – – 0 0 ?
WHOQOL WHO’s Quality of Life Assessment 96 + + – 0 0 0 0 0 +
EQ-5D EQ-5D 5 – – – 0 0 0 0 0 +
QLI Quality of Life Index 5 + + ? + 0 0 0 – +
SLS The Scale of Life Satisfaction 12 ? 0 ? ? ? ? ? ? ?
KDQOL Kidney Disease Quality of Life Scale 36 ? ? + 0 0 0 0 – +
KDQOL-SF Kidney Disease Quality of Life Short 80 ? ? + 0 0 0 0 – +
Form
MVQOLI Missoula-Vitas Quality of Life Index 15 + + + 0 0 + ? ? ?
version-15R
SF-36 The Short Form-36 questionnaire 36 + + + + + + + ? +
SF-12 The Short Form-12 questionnaire 12 + – + + ? + 0 – +
SF-8 The Short Form-8 questionnaire 8 + + + + 0 0 ? ? +
KDQ Kidney Disease Questionnaire 10 – 0 0 0 – – 0 0 ?
WHOQOL WHO’s Quality of Life Assessment 96 + + – 0 0 0 0 0 +
EQ-5D EQ-5D 5 – – – 0 0 0 0 0 +
QLI Quality of Life Index 5 + + ? + 0 0 0 – +
SLS The Scale of Life Satisfaction 12 ? 0 ? ? ? ? ? ? ?
Physiological HADS Hospital Anxiety and Depression 7 + + + + 0 0 0 0 –
Health Scale
SDS Zung Self-Rating Depression Scale 20 ? 0 + 0 0 0 0 0 –
BDI Beck Depression Inventory 21 + + + + ? + ? 0 ?
CES-D Center for Epidemiological 20 + + + + 0 ? 0 + +
Scale-Depression
PHQ-9 Patient Health Questionnaire-9 9 + – + + ? 0 0 + +
STAI State-Trait Anxiety Inventory 40 ? ? + 0 0 – 0 0 +
NPI-Q Neuropsychiatric Inventory-Brief 12 ? 0 ? ? 0 + 0 0 0
Questionnaire
Benefits and DPEBBS Dialysis patient-perceived Exercise 24 + + + ? ? 0 0 0 +
Barriers Benefits and Barriers Scale
Fatigue FSS Fatigue Severity Scale 9 0 – ? – 0 0 0 0 –
MFI Multidimensional Fatigue Inventory 20 0 + 0 + 0 ? 0 0 0
BFI Brief Fatigue Inventory 4 + + ? + 0 0 0 0 ?
HRFS Hemodialysis-related Fatigue Scale 26 ? + ? ? ? ? ? ? ?
Cognitive MMSE Mini Mental State Examination 30 ? + ? 0 0 0 0 0 0
Function MoCA-J Japanese version of the Montreal 8 0 + + + + + + 0 +
Cognitive Assessment
SDT Symbol Digit Test 4 0 + + + ? 0 0 0 0
TMT-B Trail Making Test–B 2 0 + + 0 0 0 0 0 0
Sleep Quality PSQI The Pittsburgh Sleep Quality Index 19 + + ? + 0 0 0 + +
Sleepiness ESS Epworth Sleepiness Scale 8 ? ? ? 0 ? ? ? ? ?
Status
Insomnia AIS Athens Insomnia Scale 8 + + + 0 ? ? ? ? 0
Self-efficacy ESES Exercise Self-Efficacy Scale 10 ? + ? 0 ? 0 0 0 +
CDSES Chronic Disease Self-Efficacy Scale 33 ? + + + 0 0 0 0 ?
SGSES Sherer General Self-Efficacy Scale 23 ? + + 0 0 0 0 0 0
Health GHQ-28 General Health Questionnaire-28 28 + + – ? 0 0 0 0 ?
behaviors HPLP-II Health Promoting Lifestyle Profile II 52 + + – 0 ? 0 0 0 0
Fear of falling Tinetti FES Tinetti Falls Efficacy Scale 10 – 0 0 0 – 0 0 0 ?
Perceptions DB Decision Balance Scale 10 ? + ? + 0 0 0 ? +
about OEE Outcome Expectations for Exercise 9 ? + ? ? 0 0 0 – ?
physical Scale
activity
Pain perception FIQ Fibromyalgia Impact Questionnaire 10 – 0 – 0 – 0 0 – –
a
Based on Terwee’s criteria: positive (+), intermediate (?), negative (–), or no information available (0).
WHO: World Health Organization; NR: not reported.
PSYCHOMETRICALLY VALIDATED QUESTIONNAIRES IN HEMODIALYSIS PATIENTS
7
8 M. A. MARTINS ET AL.

Psychological outcomes were evaluated, for the most part, version in hemodialysis patients—including psychometric valida-
within multiple outcomes, with depression being the most iden- tion to multiple languages—is warranted.
tified. This was the second most investigated variable by the Multiple conditions can lead to sleep disorders among patients
studies included in this review, using 7 different questionnaires with end-stage renal disease, such as poor metabolic conditions,
in total. The most common questionnaire used to measure depres- pain, dietary limitations, fatigue, muscle cramps, and mental prob-
sive symptoms in patients undergoing hemodialysis was the BDI lems [94]. Still, there is a hypothesis that links sleep disturbances
(in 11 studies) and among all the instruments that investigate the to a chronic inflammatory condition [94]. If this is true, exercise
occurrence of depression, this was the one that presented the may have a positive influence on the sleep quality of hemodialysis
greatest evaluation of the measurement properties (i.e., 8/9 psy- patients. We identified only one instrument that assesses sleep
chometric properties were reported as positive). The BDI is con- quality, the PSQI, which was used in 4 studies. This questionnaire
sidered reliable, valid, and structurally adequate to measure presented good psychometric evaluation (6/9 rated positive).
depressive symptoms in hemodialysis patients. It is worth men- Instruments to assess sleepiness status (Epworth Sleepiness Status
tioning that depression is a very present symptom in hemodialysis – ESS) [18] and insomnia (Athens Insomnia Scale – AIS) [6] were
patients [89] and it was observed that exercise has a beneficial also identified in this systematic review by one study each. Both
effect on this variable. From this, it is legitimate to reflect on the instruments had good psychometric measures (8/9 and 7/9 rated
insertion of systematic psychological measurements in patients positive, respectively) and were considered reliable, valid, and
on hemodialysis, since the understanding of the factors that affect structurally adequate to measure sleep disorders in hemodialysis
mental health can help the health team to improve the care and patients. Although sleep disorders range from 45% to 80% in
support they offer to these patients. adults with end-stage renal disease [95], it is notable as a point
Quality of life and depression were the most studied outcomes poorly explored with regard to the effect of exercise.
and presented valid, reliable and well-structured instruments. In Other measures such as self-efficacy [78,82], health behaviors
addition to being researched separately, we identified that 10 [83,84], fear of falling [24], perceptions about physical activity
articles (15.1%) [18,23,28,29,38,44,50,56,61,65] evaluated the two [85], and pain perception [18] were outcomes measured in
variables combined. This joint research can be highlighted because included questionnaires but were little explored regarding the
systemic symptoms, physical and mental disorders in hemodialysis effects of exercise on hemodialysis patients.
patients, although common, can be reduced or eliminated through Despite being a highly relevant topic around rehabilitation in
physical exercise [12]. We observed that good choices are being nephrology, perceived benefits and barriers to exercise were
made for the investigation of these outcomes and that the results assessed by a single instrument (DPEBBS), which is considered
from these instruments, in general, can be reliably presented and reliable, valid, and structurally adequate. The DPEBBS was used
interpreted. Therefore, based on the information presented in this in five studies and rated positive in 6/9 psychometric properties.
systematic review, clinicians have more subsidies to choose more This instrument was only validated for English, Chinese [96] and
reliable questionnaires to assess their routines. Turkish [97] use which may explain why there are few studies
Fatigue is another very common symptom reported by hemo- using this scale. Also, it is worth mentioning that a validated and
dialysis patients and is often pointed out as a barrier to physical adapted instrument is of great importance for quantitative studies.
exercise [21,76,77]. Surprisingly, we found few studies investigating This questionnaire assesses different dimensions of exercise per-
the effectiveness of a physical exercise program in decreasing this ception that are related to activities of daily living, symptoms,
outcome. Four specific fatigue assessment instruments used in 4 physical function, and care needs [96]. The literature indicates
different studies [18,26,78,79] were identified. In general, the eval- that in general, patients perceive more benefits than barriers
uation of psychometric properties of these questionnaires was [15,76] to exercise. Even so, this fact alone may not be enough
low; however, the Hemodialysis-related Fatigue Scale (HRFS) was to influence an individual to engage in exercise [15]. Therefore,
an instrument that presented evaluation in all measurement prop- information retrieved from the application of this questionnaire
erties (9/9). Despite being used in only one study [26], the HRFS should effectively serve to develop strategies for adherence to
is considered reliable, valid, and structurally adequate to measure physical exercise [15].
fatigue in hemodialysis patients. It is possible that in many articles Although the use of questionnaires is seen as an uncompli-
the assessment of fatigue was implied in the quality of life mea- cated way to assess the effects of exercise in hemodialysis patients,
surement. An example of this is the vitality domain of the SF-36, the use of a valid, reliable and structurally adequate instrument
which is associated with fatigue, tiredness and lack of energy is essential. Despite this, from our findings we can clearly identify
[90,91]. the need for more studies evaluating psychometric measures that
Cognitive function is a variable that has drawn the attention have not been tested satisfactorily (reproducibility agreement and
of studies in the field of nephrology [92], however, the effects of responsiveness) or hardly been tested at all (reproducibility reli-
exercise in this outcome are poorly explored. In this systematic ability and responsiveness) for most outcomes. Moreover, better
review four instruments assessing cognitive function were iden- reporting of questionnaire properties and rigorous methodology
tified [6,18,80]. In general, the psychometric measures rated neg- are needed.
ative or no information as being available. The MoCA-J was the The publication – and the list of validated questionnaires pre-
instrument that presented highest ranked measurement properties sented in this review—hopes to explain the scientific rigor
(7/9). Despite being used in only one study [6], the MoCA-J is a involved in developing a questionnaire – and ultimately selecting
reliable, valid, and structurally adequate instrument to measure one for use with patients. Authors want to emphasize that just
cognitive function in hemodialysis patients. It is important to because an instrument has been used previously, it does not
mention that this specific questionnaire is written, mean that one can assume that it has been appropriately used
culturally-adapted, and validated for Japanese patients, so it is and validated for use in a given population; or that has good
not applicable to other cultural groups or languages. In this con- psychometric properties that will justify its use in research and
text, the original version of the MoCA is the questionnaire that clinical practices.
has been used for cognitive assessment in other populations, such Conclusions that are based on data using questionnaires that
as for patients with heart failure [93] and research using this have not been validated in the population of interest cannot be
 PSYCHOMETRICALLY VALIDATED QUESTIONNAIRES IN HEMODIALYSIS PATIENTS 9

made with confidence and could lead to measurement bias. For interpretation of the data. MM and DB drafted the manuscript.
this reason, it is important that the psychometric integrity of an GG and MP critically revised the manuscript. All authors gave final
instrument in the population of interest is investigated. With this approval and agreement to be accountable for all aspects of the
review we provide a list of tools that were validated in hemodi- work ensuring integrity and accuracy.
alysis patients and based on this, we bring a careful evaluation
so that clinicians and researchers can choose to use tools that
have good reliability and validity in their structure and thus ensure Disclosure statement
that the results are more reliable.
This becomes useful because in the last years the use of No potential conflict of interest was reported by the author(s).
patient-reported outcome assessment instruments has been
increasingly recognized as being an important part of clinical
settings. Understanding the effectiveness of a particular treatment Funding
using objective outcomes can lead to better clinical decisions. The author(s) reported there is no funding associated with the
There are many instruments to choose from but what drives selec- work featured in this article.
tion should not be the widely use but the rigorous process for
developing and psychometrically validating the measure.
Despite the questionnaires are practical, low-cost and make it ORCID
possible to evaluate different outcomes without specific skills and
within the clinical practice, the clinical implications for not using Marcieli A. Martins http://orcid.org/0000-0002-8198-7593
a questionnaire validated or with good psychometric properties Gabriela L. M. Ghisi http://orcid.org/0000-0001-7946-3718
the potential for unnecessary measurement bias is increased, and Kenia B. da Silva http://orcid.org/0000-0002-7425-3073
not assuring the results are caused by an intervention or other Gabriela Leopoldino http://orcid.org/0000-0001-9077-6774
factors. Maureen Pakosh http://orcid.org/0000-0002-4507-3380
This systematic review has some limitations that need to be Daiana C. Bundchen http://orcid.org/0000-0002-3119-6515
acknowledged. First, in the process of evaluating the method-
ological quality evaluated through the application of the MMAT,
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