Development of a value-based healthcare burns core set for adult burn care.

BACKGROUND: Value-based healthcare (VBHC) is increasingly implemented in healthcare worldwide. Transparent measurement of the outcomes most important and relevant to patients is essential in VBHC, which is supported by a core set of most important quality indicators and outcomes. Therefore, the aim of this study was to develop a VBHC-burns core set for adult burn patients. METHODS: A three-round modified national Delphi study, including 44 outcomes and 24 quality indicators, was conducted to reach consensus among Dutch patients, burn care professionals and researchers. Items were rated on a nine-point Likert scale and selected if ≥ 70% in each group considered an item 'important'. Subsequently, instruments quantifying selected outcomes were identified based on a literature review and were chosen in a consensus meeting using recommendations from the Dutch consensus-based standard set and the Dutch Centre of Expertise on Health Disparities. Time assessment points were chosen to reflect the burn care and patient recovery process. Finally, the initial core set was evaluated in practice, leading to the adapted VBHC-burns core set. RESULTS: Twenty-seven patients, 63 burn care professionals and 23 researchers participated. Ten outcomes and four quality indicators were selected in the Delphi study, including the outcomes pain, wound healing, physical activity, self-care, independence, return to work, depression, itching, scar flexibility and return to school. Quality indicators included shared decision-making (SDM), the number of patients receiving aftercare, determination of burn depth, and assessment of active range of motion. After evaluation of its use in clinical practice, the core set included all items except SDM, which are assessed by 9 patient-reported outcome instruments or measured in clinical care. Assessment time points included are at discharge, 2 weeks, 3 months, 12 months after discharge and annually afterwards. CONCLUSION: A VBHC-burns core set was developed, consisting of outcomes and quality indicators that are important to burn patients and burn care professionals. The VBHC-burns core set is now systemically monitored and analysed in Dutch burn care to improve care and patient relevant outcomes. As improving burn care and patient relevant outcomes is important worldwide, the developed VBHC-burns core set could be inspiring for other countries.

Work participation, social roles, and empowerment of Q-fever fatigue syndrome patients ≥10 years after infection.

OBJECTIVE: To determine work participation, social roles, and empowerment of QFS patients ≥10-year after infection. METHODS: QFS patients ≥10-year after acute infection, who were of working age, participated in a cross-sectional survey study. Work participation, fulfilment of social roles, and empowerment outcomes were studied for the total population, as well as for subgroups based on employment type and current work status. Associations between empowerment, work and social roles were examined. RESULTS: 291 participants were included. Of the 250 participants who had paid work before Q-fever, 80.4% stopped working or worked less hours due to QFS. For each social role, more than half of the participants (56.6-87.8%) spent less time on the role compared to before Q-fever. The median empowerment score was 41.0 (IQR: 37.0-44.0) out of 60. A higher empowerment score was significantly associated with lower odds of performing all social roles less due to QFS (OR = 0.871-0.933; p<0.001-0.026), except for parenting and informal care provision (p = 0.070-0.460). No associations were found between empowerment and current work status. CONCLUSION: Work participation and fulfilment of social roles is generally low in QFS patients. Many of the participants stopped working or are working less hours due to QFS, and most spent less time on social roles compared to before Q-fever. Minor variation was seen in total empowerment scores of participants; however, these slight differences were associated with the fulfilment of social roles, but not work participation. This new insight should be further explored in future studies.

Outcomes that matter most to burn patients: A national multicentre survey study in the Netherlands.

BACKGROUND: The use of patient-reported outcomes to improve burn care increases. Little is known on burn patients' views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs. METHODS: Adult patients (≥18 years old), 3-36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (<6 months) and long-term (6-24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried. RESULTS: A total of 140 patients were included (response rate: 27%). 'Not having pain' and 'good wound healing' were identified as very important outcomes. Also, 'physical functioning at pre-injury level', 'being independent' and 'taking care of yourself' were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients' opinions differed widely on the preferred frequency of follow-up. CONCLUSIONS: Not having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.

The relation between EQ-5D and fatigue in a Dutch general population sample: an explorative study.

BACKGROUND: Fatigue negatively influences health-related quality of life. It is questionable whether fatigue is sufficiently covered by the EQ-5D. This study investigated whether fatigue is covered by the existing domains of the EQ-5D. METHODS: A Dutch general population sample completed the EQ-5D (3L and 5L version) and the Rivermead Post-Concussion Symptoms Questionnaire (RPQ), of which the fatigue item was used. Outcomes were compared between participants with and without a chronic health condition. Convergent validity was assessed, and multivariate regression analyses was used to predict the RPQ fatigue item from the EQ-5D-3L and EQ-5D-5L domains separately. RESULTS: 3027 people completed the survey, of whom 52% had ≥ 1 chronic health condition. Fatigue was reported by 48% of the participants. Fatigue was moderately correlated to the EQ-5D domains 'pain/discomfort', 'usual activities', and 'anxiety/depression' for the 3L (r = 0.379-0.426) and 5L version (r = 0.411-0.469). For the 5L, also a moderate correlation with 'mobility' (r = 0.335) was observed. The remaining correlations were weak. All EQ-5D-3L and 5L domains except for 'mobility' were significantly associated with the RPQ fatigue item (unstandardized Beta = - 0.20-0.67; p < 0.01 to p = 0.04). Comparable outcomes were found for participants with and without ≥ 1 chronic health condition. CONCLUSIONS: The extent to which fatigue is covered by the EQ-5D domains is small to moderate, with the EQ-5D-5L being slightly more sensitive to capture fatigue compared to the EQ-5D-3L. An extra fatigue item for the EQ-5D may add value, as fatigue is not fully captured by the existing domains, both in people with and without a chronic health condition.

The added value of extending the EQ-5D-5L with an itching item for the assessment of health-related quality of life of burn patients: an explorative study.

INTRODUCTION: Health-related quality of life (HRQL) is an important outcome in burn care and research. An advantage of a generic HRQL instrument, like the EQ-5D, is that it enables comparison of outcomes with other conditions and the general population. However, the downside is that it does not include burn specific domains, like scar issues or itching. Adding extra items to a generic instrument might overcome this issue. This study explored the potential and added value of extending the EQ-5D-5L with a burn-specific item, using a itching item as an example. METHODS: The EQ-5D-5L and the Patient and Observer Scar Assessment Scale (POSAS) was completed by adult patients 5-7 years after injury. A separate POSAS itching item was used to study the added value of an itching item for the EQ-5D-5L. The EQ-5D-5L + Itching was created by adding the POSAS itching item to the EQ-5D-5L. Five psychometric properties were compared between EQ-5D-5L and EQ-5D-5L + Itching: distribution (e.g. ceiling), informativity cf. Shannon's indices, convergent validity, dimension dependency, and explanatory power respectively. RESULTS: A total of 243 patients were included, of whom 49% reported any itching on the POSAS. Adding an itching item to the EQ-5D-5L decreased the ceiling effect, and resulted in increased absolute informativity (H' = 4.76 vs. H' = 3.64) and relative informativity (J' = 0.34 vs. J' = 0.31). The extra itching item decreased the convergent validity (Spearman's rank correlation coefficient = -0.51 vs. -0.59). Mutual dependency of dimensions existed, showing that all other items were dominant over the itching item. Adding the itching item to the standard EQ-5D-5L barely improved explanatory power (49.3% vs. 49.0%). CONCLUSIONS: PThe present study showed adding a burn-specific item to the EQ-5D-5L is possible and has potential. However, 5 to 7 years after injury, adding an itching item to the EQ-5D-5L provides little additional information; the gain in terms of added value is relatively small. Apart from instances where itching information is specifically needed, a strong case is not present for adding an itching item to the EQ-5D-5L for long-term (>5 yr after burns) HRQL assessment in burn patients. In early time periods after burn, the added value might be greater and we recommend exploring this potential in future studies, ideally on multiple timepoints after burn.

Exploring the relation between the EQ-5D-5L pain/discomfort and pain and itching in a sample of burn patients.

BACKGROUND: The EQ-5D domain pain/discomfort (PD) uses one item to capture pain and other aspects of discomfort, like itching. This study explored how pain, itching and the EQ-5D-5L PD domain relate to each other in a sample of burn patients. METHODS: Adult burn patients completed the EQ-5D-5L and the Patient and Observer Scar Assessment Scale (POSAS) 5-7 years after sustaining their injury. The POSAS includes a separate pain and an itching item. Spearman's correlation coefficient established the association between the EQ-5D-5L PD and the POSAS pain and itching item. With multivariable regression analysis the linear association between the POSAS pain and itching item and EQ-5D-5L PD domain was tested. RESULTS: Data from 245 patients were included. Mean EQ-5D-5L index value was 0.87 and 39.2% reported at least slight problems on the EQ-5D-5L PD domain. Most patients gave corresponding answers on the EQ-5D-5L PD domain and on the POSAS pain (73%) and itching (70%) item. Spearman correlation coefficients of the EQ-5D-5L PD domain with the POSAS pain and itching were 0.468 (p < 0.001) and 0.473 (p < 0.001), respectively. Among respondents with pain and without itching and respondents with itching and without pain, Spearman correlation coefficients were 0.585 (p = 0.076) and 0.408 (p = 0.001), respectively. POSAS pain (unstandardized Beta = 0.14) and POSAS itching (unstandardized Beta = 0.08) were significantly associated with EQ-5D-5L PD domain (p < 0.001). CONCLUSIONS: Our findings indicate that, in a sample of burn patients, pain and itching are captured by the broader EQ-5D-5L PD domain. The EQ-5D-5L PD domain can thus be used to assess pain and itching in relation to HRQL, but the POSAS pain and itching items are more sensitive. The EQ-5D-5L is, however, no replacement of the POSAS when the POSAS is used for its primary aim; assessment of scar quality. TRIAL REGISTRATION: Netherlands Trial Register (NTR6407).

Correspondence of directly reported and recalled health-related quality of life in a large heterogeneous sample of trauma patients.

PURPOSE: To evaluate the correspondence of directly reported and recalled health-related quality of life (HRQL) in a heterogeneous sample of trauma patients. METHODS: Adult trauma patients who attended the Emergency Department and were admitted between 03/2016 and 11/2016 were invited to participate. Postal surveys were sent 1 week (T1), 3 months (T2), and 12 months (T3) post-trauma. The EQ-5D-3L and Visual Analogue Scale (EQ-VAS) were used to assess directly reported and recalled HRQL. RESULTS: The EQ-5D was completed by 446 patients at T1, T2, and T3. Directly reported mean T1 EQ-5D summary score was 0.482, whereas recalled T1 EQ-5D summary score was 0.453 (p < 0.05) at T2 and 0.363 (p < 0.001) at T3. Directly reported mean T2 EQ-5D summary score was 0.737 and mean recalled T2 EQ-5D summary score was 0.713 (p < 0.05) at T3. Directly reported mean T1 EQ-VAS was 56.3, whereas mean recalled T1 EQ-VAS at T2 and T3 was 55.4 (p = 0.304) and 53.3 (p < 0.05), respectively. Directly reported mean T2 EQ-VAS was 72.5 and recalled T2 EQ-VAS at T3 was 68.0 (p < 0.001). The correspondence between all directly reported and recalled HRQL (both EQ-5D summary and EQ-VAS) was fair (ICC = 0.518-0.598). Lowest correspondence was seen in patients with major trauma (injury severity score ≥ 16) and in patients with middle-level education. CONCLUSIONS: Recalled HRQL measured by the EQ-5D-3L and EQ-VAS was systematically lower compared to the directly reported HRQL. Patient characteristics, injury severity, subjectivity of the dimension, and time interval appear to influence correspondence between directly reported and recalled HRQL.