An important starting point in effective clinical management is the assessment and identification of problems [ 6 ]. This problem is compounded because patients have multiple symptoms and concerns [ 12 — 14 ]. Although practitioners express positive attitudes towards measuring PROMs [ 17 , 18 ], routine measurement of concerns is hampered by a lack of training and guidance on how to use and respond to PROMs in clinical care [ 17 — 19 ]. Published guidance on using PROMs [ 20 — 22 ] is fragmented; it lacks specified steps and recommendations to follow when implementing PROMs [ 20 , 21 ] or does not focus on advance disease [ 22 ].
Even more pressing, there is a lack of guidance on how to respond to specific PROM scores. There is often an unfamiliarity with the score interpretation [ 23 ], while PROM scores are potentially not fed back to the right person, or reported as often as needed [ 24 ]. Clinical significance of health-related quality of life scores are not always reported in studies [ 25 , 26 ]. Unsurprisingly, therefore, clinical decision-making is not often based on outcome scores [ 27 ] and measuring PROMS seems to have a stronger impact on process-aspects of care, i.
Ideally, PROMs should routinely be used and assist in detecting problems, planning treatment, and monitoring how well concerns are alleviated. To fill this gap we need specific clinical decision support aids for specific PROM scores.
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This should be linked with better focused guidance on how to implement PROMs in routine clinical practice. It is important that both sets of guidance are developed together. This will ensure specific PROMs are successfully implemented in clinical care, while at the same time clinicians are supported in using the PROMs when responding to concerns.
Dyspnoea in Advanced Disease
It assesses physical symptoms, emotional, psychological, and spiritual concerns, and needs for information and support [ 31 ]. A full suite of free user support resources is available at www. Most difficulties were encountered with interpreting the questions regarding psychological functioning i. Breathlessness is a very disturbing symptom for patients [ 36 , 37 ] and their families [ 38 ].
Creation of evidence-based clinical guidance on how to respond to these concerns is needed. The aim of this study was therefore to develop a Clinical Decision Support Tool CDST for the specific POS items of most concern to clinicians: information needs, family anxiety, depression, and breathlessness. This article reports the development and final formats of the CDST and implementation guidance. It also offers a novel methodological approach for CDSTs in other areas.
A literature search and expert consultations were used to create the PROMs implementation guidance. Participants were explained that participation implied informed consent. The CDST on how to respond to different levels of reported POS scores on information needs, family anxiety, depression, and breathlessness was created using a systematic literature search to develop preliminary recommendations for clinical care, followed by a modified Delphi approach to determine how the recommendations should be applied for different levels of POS score severity.
To develop draft recommendations we searched for guidelines and systematic reviews on the aforementioned topics in PubMed, Google Scholar first 4 pages , Cochrane Database, and the York DARE database to end June Three guides on using PROMS were screened for relevant information [ 20 — 22 ] see Additional file 1 for search strategies.
Data from included sources on how to clinically respond to information needs, family anxiety, depression, and breathlessness was extracted by LV.
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LV drafted recommendations based on the extracted evidence. We conducted a two-round online Delphi-study [ 39 , 40 ] hosted via internet platform Keypoint , to appraise and revise the draft recommendations and agree an expert consensus on the appropriateness of all recommendations for all scores on the POS items. Experts were chosen based on their expertise in the field of the topics under study.
In round 2, a summary of the results of round 1 was provided median, range, interquartile ranges, summary qualitative remarks which participants were asked to take into account when rating the recommendations again. The results of round 1 were circulated. Lastly, the draft CDST was commented upon by the same, plus one additional experts via email and in a face-to-face research meeting with different researchers.
For each recommendation, the quality of evidence was determined, using an adapted GRADE approach [ 44 ] with the classifications: A e.
We rated each recommendation using the most recent and highest level of known evidence based on design. If sources already provided a quality rating, their rating was used. Additional file 2 depicts how quality ratings from each source were mapped to the ABCD framework. We scoped the literature for relevant guidance on implementing PROMs. Data was extracted from these sources to develop with assistance of several experts in the field a draft implementation guidance linked to our specific PROM, the POS. A finalized version was created with comments from one additional expert.
Our search of the online databases revealed sources after duplication removal of which 31 were included see Fig. Two additional guidelines [ 76 , 77 ] were added as they were referred to by two included references [ 49 , 73 ].
In addition, nine extra guidelines were included from the screened websites [ 78 — 86 ]. Therefore, ultimately 43 sources were included. All included sources were scrutinized for evidence-based conclusions, data and recommendations on how to clinically respond to information needs, family anxiety, depression, and breathlessness in palliative care. Overall, 47 recommendations were drafted to be rated in the Delphi Round 1.
Not all included sources provided information that could be used to draft recommendations, e. As no other source focused on this topic, no recommendations about home-based care were made [ 72 ]. For round 2, experts were asked to take into account a summary of the qualitative and quantitative results of round 1. Demographic characteristics of participating experts in rounds 1 and 2 are displayed in Additional file 3. Quality of evidence was added for each recommendation, ranging from high to very low later adapted to A—D.
One recommendation regarding chest-wall vibration to treat breathlessness was downgraded from A to B as evidence was based on laboratory as opposed to clinical studies. Main comments focused on making it clear that for higher POS scores, lower recommendations still apply and creating both a short and long manual, while both formats of the decision diagrams were equally preferred also in the face-to-face researchers meeting. The final decision-diagrams are depicted in Figs.
Additional file 4 depicts the short manual while the long manual can be found at the Palliative care Outcome Scale website [ 35 ]. Independent of POS score, core recommendations center on: i good patient care, ii the provision of psychosocial support and empathy, and iii the use of open communication. Proper assessment is needed for increasing scores, followed by non-pharmacological interventions, and pharmacological interventions for high levels of depression and breathlessness.
We amalgamated consistent recommendations from the different sources into this framework. This is the first study to develop a CDST for some of the complex problems faced in advanced disease, in particular information needs, family anxiety, depression, and breathlessness, linking these to specific actions. The CDST has an evidence-based approach, responding to different levels of patient-reported symptoms.
We found it was necessary to have both core recommendations, applicable for all symptom levels, as well as responses that could be titrated up with increasingly severe symptom scores.
Accompanying guidance on PROM implementation was also developed, using an 8-step approach. The potential of our guidance and CDST to improve provided care and patient outcomes is supported by accumulating evidence. Expert consensus underlines the importance of coming to a routinely collected set of outcome measures, which can be used to make comparisons across services and countries [ 21 ]. Our provided guidance might assist in this development while overcoming some of the perceived barriers of implementing PROMs, most notably a lack of knowledge and education [ 6 , 91 ]. The CDST can assist clinicians in responding to the psychosocial aspects of clinical care which they may feel less confident in delivering.
Across the several symptoms included in our Delphi, for higher scores, more intensive clinical responses seem warranted. Ensuring the core recommendations good patient care; providing psychosocial support and empathy; the use of open communication are in place remains vital in these situations. These core recommendations reflect previous study findings, showing that patients expect their clinicians to show both technical competence [ 92 ] as well as seeing them as an individual person [ 93 ].
Edited by Nathan Cherny, Marie Fallon, Stein Kaasa, Russell K. Portenoy, and David C. Currow
Empathy becomes increasingly important in progressing disease [ 94 ], while most medical complaints are related to communication deficits [ 95 , 96 ], adding not only to patient but also caregiver distress [ 97 ]. Our CDST postulates that proper assessment should be followed by non-pharmacological interventions which can be progressed to pharmacological interventions in the more medical oriented symptoms of breathlessness and depression.
However, also in these domains, there seems a preference for psychosocial interventions. This service combined pharmacological review with a focus on non-pharmacological interventions such as pacing and relaxation. Although the CDST proposals are based on scientific evidence combined with expert opinion, this tool is not intended to be prescriptive.
Instead, it aims to help practitioners think through the best decision towards difficult and complex encountered problems. Being too prescriptive can be counterproductive, especially because in advanced illness patients and families have complex and often quite individual needs, circumstances, and trajectories, which interact [ 1 , ]. In areas of uncertainty or conflict, specialist support or a second opinion should be obtained. As the implementation guide makes clear, training and ongoing support will be an essential component. This study has limitations.
Next, we asked participants in the Delphi study to review a wide area of topics, which might have been challenging, especially surrounding the specific topic of breathlessness. No strength of recommendation representing whether desirable effects of recommendations clearly outweigh or not undesirable effects [ 44 ] was provided due to the heterogeneity of used quality ratings and the envisaged applicability of our recommendations in different settings and countries. Lower ratings do not necessarily imply that these recommendations are not important, as they were among the highest rated recommendations by our expert panel e.
These ratings also highlight the pressing need for more high-quality research studies to build the evidence-base of these and other key components of palliative care. However, this is still in the early stages of evaluation, with recent studies showing conflicting effects e. As fans are inexpensive, unlike to cause any harm and have low side effects, they can be worth trying. Another limitation entailed that we only included sources that focused on palliative care in general and not on specific diseases as we sought recommendations that were applicable across diseases.
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For some diseases, the evidence might propose alternative strategies; however, we would expect experts in those fields to be aware of this evidence to take it into consideration. Although we used a broad search strategy, relevant sources might have been missed. These were not found via our search strategies as they are very recent , but we believed them to be of importance to clinical care. Finally, due to time and resource constraints, only one author identified resources and extracted data of included sources.
That being said, a major strength of this work includes the involvement of patients and families in the development of the CDST and the combination of evidence-based recommendations with clinician expertise. Our findings underline the importance of providing good patient care, psychosocial support and empathy, and communication in advanced disease for all patients and families, irrespective of POS scores, in the domains of information needs, family anxiety, depression, and breathlessness.