Plain English Summary
Introduction
Methods
Study population
Questionnaire development
Questionnaire evaluation
Item generation
Cognitive interviews
Personalized priority and progress questionnaire (PPPQ)
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QoL: Whether patients experience limitations in QoL areas in the past 2 weeks is assessed by 8 items (fatigue, pain, itch, anxiety, depression, social environment, daily activities, and dependency), of which items can be omitted if not relevant in a particular population. Items are scored on a 5-point Likert scale (1 = not at all, 5 = extremely). An example item is “To what extent have you experienced limitations in the area of fatigue or sleep problems?”.
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Self-management: 5 items assess medication adherence, healthy diet, physical activity, weight maintenance, and non-smoking, using 5-point Likert scales (1 = not at all, 5 = extremely well). An example item is “To what extent have you managed to always take your medication as prescribed?”.
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Priorities: Patients make two top-2’s of the areas of QoL and self-management they prioritize for improvement and would actively commit to over the coming period.
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QoL and self-management: Patients indicate whether their experienced QoL limitations and self-management behaviors changed since the baseline measurement. The items are answered using a 7-point Likert scale (− 3 = many more, 0 = remained the same, + 3 = much fewer), following the base “Compared to the last time I completed this questionnaire, …”. Higher scores indicate improved QoL or self-management behavior. Example items are: “I now experience more/similar/fewer limitations in the area of fatigue or sleep problems” (QoL) and “I have managed less well/equally well/better to always take my medication as prescribed” (self-management).
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Priorities: Patients indicate whether they tried to improve in any QoL or self-management areas since the baseline measurement. Patients select a maximum of 2 QoL areas and 2 self-management behaviors or the options ‘other’ or ‘not applicable’ (when not worked on anything).
Measures
Patient characteristics
Related constructs
Construct | Measure |
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Quality of life areas | |
Fatigue | Shortened Fatigue Questionnaire (SFQ) [48] |
Sleeping problems | Sleep Problem Index II, Medical Outcomes Study (MOS) Sleep Scale [49] |
Energy | Subscale Energya, RAND Short Form-36 Health Status Inventory (RAND SF-36) [50] |
Pain | Subscale Paina, RAND Short Form-36 Health Status Inventory (RAND SF-36)) [50] |
Itch | Impact of Chronic Skin Disease on Daily Life (ISDL) [51] |
Anxiety | Generalized Anxiety Disorder 7-item Scale (GAD-7) [52] |
Worrying | Penn State Worry Questionnaire (PSWQ) [53] |
Depression | Patient Health Questionnaire depression scale (PHQ-9) [54] |
Social functioning | Subscale Social functioninga, RAND Short Form-36 Health Status Inventory (RAND SF-36)) [50] |
Perceived emotional support | Subscale Perceived support, Inventory for Social Reliance (ISR) [55] |
Actual emotional support | Subscale Actual support, Inventory for Social Reliance (ISR) [55] |
Mutual visiting | Mutual visiting, Inventory for Social Reliance (ISR) [55] |
Daily activities | Subscale role limitations due to physical problemsa, RAND Short Form-36 Health Status Inventory (RAND SF-36)) [50] |
Self-management behaviors | |
Self-management | Partners in Health Scale (PiH) [56] |
Medication adherence | Simplified Medication Adherence Questionnaire (SMAQ) [57] |
Dietary adherence | 2 self-constructed questionsb: “In the past week, how often have you kept a healthy diet?” (scored 1–5 from “never” to “always”) “In the past week, how well do you believe you have kept a healthy diet?” (score 1˗10 from “very badly” to “very well”) |
Physical activity, hrs. per week | Short Questionnaire to Assess Health-enhancing physical activity (SQUASH) [58] |
Physical activity, days per week minimally 30 min. active | Short Questionnaire to Assess Health-enhancing physical activity (SQUASH) [58] |
Weight maintenance | Body mass index (BMI) [59], ratio of body weight (kg) and the square of height (m) |
Smoking behavior | Current smoking on daily or nondaily basis) (yes/no) Amount of tobacco per day |
Statistical analyses
Results
Questionnaire development
Feasibility PPPQ
Questionnaire evaluation
Patient characteristics
CKD patients (N = 121) | Dialysis patients (N = 22) | |
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Age, mean (SD) | 55.95 (13.87) | 65.50 (11.68) |
Median | 57.31 | 67.00 |
Range | 25.77–81.59 | 46.00–83.00 |
Male sex | 56.7% | 54.5% |
Education level | ||
Lower | 52.9% | 45.5% |
Higher | 46.3% | 54.5% |
Unknown | 0.8% | - |
Marital status, with partner | 73.6% | 95.5% |
Comorbidity | 69.4% | 86.4% |
Hypertension | 39.7% | 50.0% |
Heart disease | 19.0% | 40.9% |
Diabetes | 16.5% | 31.8% |
Gastrointestinal disease | 9.1% | 27.3% |
Lung disease | 6.6% | 18.2% |
Cancer | 5.8% | 9.1% |
Physical quality of life (PCS, RAND SF-36) | 35.97 (8.64) | 34.18 (7.14) |
Mental quality of life (MCS, RAND SF-36) | 39.81 (8.68) | 44.18 (9.22) |
Descriptives PPPQ and related constructs
CKD patients (N = 121) | Dialysis patients (N = 22) | |||||||
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Baseline | Follow-upa | Baseline | Follow-upb | |||||
Mean (SD) | α | Mean (SD) | Α | Mean (SD) | α | Mean (SD) | α | |
PPPQ QoL itemsc | 2.15 (0.63) | .74 | 0.42 (0.91) | .88 | 1.94 (0.43) | .60 | 0.27 (0.82) | .80 |
PPPQ self-management itemsc | 3.56 (0.58) | .42 | 0.28 (0.74) | .69 | – | – | – | – |
Fatigue (SFQ) | 18.98 (5.16) | .85 | 17.10 (5.94) | .89 | 20.59 (5.47) | .87 | 19.54 (5.75) | .86 |
Sleeping problems (Sleep Problem Index II, MOS Sleep scale) | 40.63 (15.89) | .81 | 36.16 (15.90) | .81 | – | – | – | – |
Energy (Energy scale, RAND SF-36) | 42.29 (6.41) | .63 | 44.31 (7.70) | .76 | 44.77 (8.92) | .82 | 41.91 (7.19) | .67 |
Pain (subscale RAND SF-36) | 44.26 (9.60) | .73 | 46.33 (9.82) | .74 | 47.64 (11.17) | .76 | 47.23 (10.16) | .66 |
Itch (ISDL) | – | – | – | – | 7.05 (2.89) | .88 | 6.87 (2.44) | .80 |
Anxiety (GAD-7) | 5.49 (3.78) | .81 | 3.95 (3.16) | .81 | 2.36 (1.92) | .68 | 2.55 (2.44) | .72 |
Worrying (PSWQ) | 44.79 (10.94) | .91 | 42.01 (11.33) | .91 | – | – | – | – |
Depression (PHQ-9) | 7.91 (3.33) | .54 | 5.76 (3.78) | .74 | 5.73 (3.67) | .77 | 7.14 (4.39) | .79 |
Social functioning (subscale RAND SF-36) | 39.07 (9.67) | .68 | 42.24 (10.50) | .79 | 39.68 (9.78) | .56 | 35.68 (10.47) | .78 |
Perceived emotional support (ISR) | 14.47 (3.52) | .82 | 14.89 (3.47) | .82 | 15.68 (3.71) | .81 | 15.82 (3.58) | .88 |
Actual emotional support (ISR) | 7.25 (2.00) | .77 | 7.22 (1.84) | .72 | 6.36 (2.24) | .81 | 6.05 (2.01) | .80 |
Mutual visiting (ISR) | 5.35 (1.42) | .74 | 5.35 (1.26) | .64 | 5.18 (1.53) | .84 | 4.81 (1.62) | .53 |
Role limitations due to physical problems (subscale RAND SF-36) | 36.18 (11.44) | .82 | 40.77 (11.80) | .81 | 30.73 (9.40) | .88 | 33.05 (10.40) | .84 |
Self-management (PiH) | 80.04 (9.63) | .78 | 82.74 (9.27) | .81 | – | – | – | – |
Medication adherence (SMAQ) | 5.16 (1.05) | n/a | 5.25 (0.95) | n/a | – | – | – | – |
Dietary adherence | 0.00 (0.93) | n/a | 0.35 (0.76) | n/a | – | – | – | – |
Physical activity, hrs. per week (SQUASH) | 17.10 (16.04) | n/a | 15.54 (15.52) | n/a | – | – | – | – |
BMI | 27.38 (5.33) | n/a | 27.16 (5.35) | n/a | – | – | – | – |
Smoking, % | 9.1 | n/a | 8.3 | n/a | – | – | – | – |
Amount of tobacco per day, units | 0.80 (3.31) | n/a | 0.50 (2.75) | n/a | – | – | – | – |
Item characteristics PPPQ
QoL
Baseline | Follow-up | |||||||||||||||
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CKD patients (N = 121) | Dialysis patients (N = 22) | CKD patients (N = 121) | Dialysis patients (N = 22) | |||||||||||||
Item | Mean (SD) | Floor (%) | Ceiling (%) | Range | Mean (SD) | Floor (%) | Ceiling (%) | Range | Mean (SD) | Floor (%) | Ceiling (%) | Range | Mean (SD) | Floor (%) | Ceiling (%) | Range |
QoL items | ||||||||||||||||
Fatigue | 3.15 (1.12) | 5.0 | 13.2 | 1–5 | 2.86 (1.04) | 4.5 | 9.1 | 1–5 | 0.21 (1.14) | 0.8 | 2.5 | − 3 to 3 | − 0.45 (1.18) | 4.5 | 0 | − 3 to 2 |
Pain | 2.08 (1.05) | 36.4 | 0.8 | 1–5 | 1.82 (0.85) | 45.5 | 0 | 1–3 | 0.32 (1.21) | 1.7 | 8.3 | − 3 to 3 | 0.27 (1.07) | 0 | 4.5 | − 2 to 3 |
Itch | 1.61 (0.93) | 62.0 | 0.8 | 1–5 | 2.05 (0.72) | 18.2 | 0 | 1–4 | 0.56 (1.25) | 0 | 13.2 | − 2 to 3 | 0.45 (1.10) | 0 | 4.5 | − 1 to 3 |
Anxiety | 2.02 (0.91) | 30.6 | 0.8 | 1–5 | 1.55 (0.51) | 45.5 | 0 | 1–2 | 0.57 (1.25) | 0.8 | 8.3 | − 3 to 3 | 0.59 (1.44) | 0 | 18.2 | − 2 to 3 |
Depression | 1.79 (0.87) | 43.8 | 0 | 1–4 | 1.55 (0.60) | 50.0 | 0 | 1–3 | 0.62 (1.29) | 0.8 | 9.9 | − 3 to 3 | 0.59 (1.47) | 0 | 18.2 | − 2 to 3 |
Social environment | 1.90 (0.96) | 39.7 | 3.3 | 1–5 | 1.59 (0.96) | 63.6 | 0 | 1–4 | 0.33 (1.15) | 0.8 | 5.8 | − 3 to 3 | 0.41 (1.30) | 0 | 13.6 | − 2 to 3 |
Daily activities | 2.50 (1.14) | 19.8 | 5.8 | 1–5 | 2.27 (0.99) | 18.2 | 0 | 1–4 | 0.32 (1.14) | 1.7 | 5.0 | − 3 to 3 | 0.36 (1.09) | 0 | 4.5 | − 1 to 3 |
Dependency | – | – | – | – | 1.86 (0.89) | 40.9 | 0 | 1–4 | – | – | – | – | − 0.09 (1.34) | 4.5 | 4.5 | − 3 to 3 |
Self-management items | ||||||||||||||||
Medication adherence | 4.45 (0.77) | 0 | 58.7 | 2–5 | – | – | – | – | 0.23 (0.78) | 0 | 4.1 | − 2 to 3 | – | – | – | – |
Healthy diet | 3.39 (0.90) | 1.7 | 8.3 | 1–5 | – | – | – | – | 0.29 (1.04) | 0.8 | 3.3 | − 3 to 3 | – | – | – | – |
Physical activity | 2.82 (1.04) | 9.9 | 4.1 | 1–5 | – | – | – | – | 0.29 (1.21) | 0 | 5.8 | − 2 to 3 | – | – | – | – |
Weight maintenance | 2.64 (1.23) | 20.7 | 7.4 | 1–5 | – | – | – | – | 0.17 (1.16) | 0 | 4.1 | − 2 to 3 | – | – | – | – |
Non-smoking | 4.52 (1.24) | 9.9 | 85.1 | 1–5 | – | – | – | – | 0.45 (1.29) | 2.5 | 14.9 | − 3 to 3 | – | – | – | – |
Self-management
Construct validity PPPQ
QoL
Fatigue | Pain | Itch | Anxiety | Depression | Social environment | Daily activities | Dependency | ||
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Fatigue (SFQ) | CKD: Dialysis: | .47** .41 | – | – | – | – | – | – | – |
Sleeping problems (Sleep Problem Index II, MOS Sleep scale) | CKD: Dialysis: | .42** | – | – | – | – | – | – | – |
Energy (subscale, RAND SF-36) | CKD: Dialysis: | − .42** − .43* | – | – | – | – | – | – | – |
Pain (subscale RAND SF-36) | CKD: Dialysis: | – | –.68** − .70* | – | – | – | – | – | – |
Itch (ISDL) | CKD: Dialysis: | – | – | – .68** | – | – | – | – | – |
Anxiety (GAD-7) | CKD: Dialysis: | – | – | – | .67** .32 | - | – | – | – |
Worrying (PSWQ) | CKD: Dialysis: | – | – | – | .55** | - | – | – | – |
Depression (PHQ-9) | CKD: Dialysis: | – | – | – | – | .46** .70** | – | – | – |
Social functioning (subscale RAND SF-36) | CKD: Dialysis: | – | – | – | – | – | − .38** − .44** | – | – − .35 |
Perceived emotional support (ISR) | CKD: Dialysis: | – | – | – | – | – | -.09 -.31 | – | – .13 |
Actual emotional support (ISR) | CKD: Dialysis: | – | – | – | – | – | -.02 − .22 | – | – .002 |
Mutual visiting (ISR) | CKD: Dialysis: | – | – | – | – | – | − .10 − .21 | – | – − .16 |
Role limitations due to physical problems (subscale RAND SF-36) | CKD: Dialysis: | – | – | – | – | – | – | − .42** − .003 | – |
Fatigue | Pain | Itch | Anxiety | Depression | Social environment | Daily activities | Dependency | ||
---|---|---|---|---|---|---|---|---|---|
Fatigue (SFQ) | CKD: Dialysis: | − .36** − .39 | – | – | – | – | – | – | – |
Sleeping problems (Sleep Problem Index II, MOS Sleep scale) | CKD: Dialysis: | − .30** | – | – | – | – | – | – | – |
Energy (subscale, RAND SF-36) | CKD: Dialysis: | .36** .39 | – | – | – | – | – | – | - |
Pain (subscale RAND SF-36) | CKD: Dialysis: | – | .14 .05 | – | – | – | – | – | – |
Itch (IHDL) | CKD: Dialysis: | – | – | – − .43* | - | – | – | – | – |
Anxiety (GAD-7) | CKD: Dialysis: | – | - | - | − .21* − .15 | – | – | – | – |
Worrying (PSWQ) | CKD: Dialysis: | – | - | - | − .11 – | – | – | – | – |
Depression (PHQ-9) | CKD: Dialysis: | – | - | - | – | − .35** − .04 | – | – | – |
Social functioning (subscale RAND SF-36) | CKD: Dialysis: | – | – | – | – | - | .14 .13 | – | − .30 |
Perceived emotional support (ISR) | CKD: Dialysis: | – | – | – | – | – | .03 − .41 | – | − .27 |
Actual emotional support (ISR) | CKD: Dialysis: | – | – | – | – | – | − .03 − .20 | – | – − .32 |
Mutual visiting (ISR) | CKD: Dialysis: | – | – | – | – | – | .004 .20 | – | − .30 |
Role limitations due to physical problems (subscale RAND SF-36) | CKD: Dialysis: | – | – | – | – | – | – | .21* − .06 | – |
Self-management
Medication adherence | Healthy diet | Physical activity | Weight maintenance | Non-smoking | |
---|---|---|---|---|---|
Self-management (PiH) | .19* | .27** | .23* | .22* | .25** |
Medication adherence (SMAQ) | .44** | – | – | – | – |
Dietary adherence | – | .61** | – | – | – |
Physical activity, hrs. per week (SQUASH) | – | – | .23* | - | – |
Physical activity, days per week minimally 30 min. active | .43** | ||||
BMI | – | – | – | − .63** | – |
Amount of tobacco per day | − .66** |
Medication adherence | Healthy diet | Physical activity | Weight maintenance | Non-smoking | |
---|---|---|---|---|---|
Self-management (PiH) | .09 | .26** | .40** | .31** | −.02 |
Medication adherence (SMAQ) | .15 | – | – | – | - |
Dietary adherence | – | .29** | – | – | – |
Physical activity, hrs. per week (SQUASH) | – | - | −.12 | – | – |
Physical activity, days per week minimally 30 min. active | .18 | ||||
BMI | – | - | – | −.18 | – |
Amount of tobacco per day | −.25** |
Discussion
Strengths and limitations
Implications
Clinical settings | Research settings |
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• Identify patient priorities | • Evaluate personalized interventions by using the progress score |
• Use as conversation starter for a talk on patient priorities and patient needs | • Add or remove items to match the specific needs of the study population |
• Use to support shared decision-making and tailor treatment based on results | • Use both the QoL and self-management items or only the QoL or self-management items to match the specific research questions |
• Monitor patients’ QoL and adherence to self-management behaviors | • All implications listed under clinical settings are applicable in intervention studies as well |