Perspective on network based improvement: using health-related quality of life instruments for children with long term conditions

1. Perspective on network based improvement: Using health-related quality of life instruments for children with long-term conditions – based on the NQR system Christina Peterson, RN, CPN, MSc, PhD, Senior lecturer Registry center South East (RCSO) and Jönköping University
2. What is a National Quality registry? • Problems/diagnoses/measures concerning outcomes for a specific group of individuals • Enables learning and continuous improvements • Follow up achievements in care (specific county areas, hospitals and clinics) • Driven by professionals www.vardenisiffror.se
3. Why using a national quality registry (NQR)? The NQR are used integrated and actively for continuous learning, improvement and research as well as for management and evidence-based practice in health care. This will create the best possible health, care and welfare together with the individual.
4. Measures in NQR (Example from the Swedish Pediatric Rheumatology registry) CLINICAL OUTCOMES • CRP, SR (clinical measures) • Morbidity FUNCTIONAL OUTCOMES • Quality of life • Pain assessment SATISFACTION ”Do you feel understood of those who care for you”? COSTS • Direct (hospital admissions) • Indirect (being presence in school)
5. The use of Clinical dash-boards
6. Evaluating the implementation of the HRQOL instrument Interviews with children (10- 17 years old) about sharing their data with professionals during encounters Results: Providing insights about my health which constitute a motivation for change Encouraging if outcomes are requested and discussed with professionals Petersson C., Huus., K., Åkesson, K., & Enskär, K. (2016). Children’s experience about a structured assessment of health-related quality of life during a patient encounter, Child: health care and dev. 42 (3), 424-432.
7. Evaluating the implementation of the HRQOL instrument Petersson C., Huus., K., Åkesson, K., Enskär, K. & Golsäter, M. (2017). To promote child involvement – healthcare professionals’ use of a health-related quality of life assessment tool during pediatric encounters, European Journal for person-centered healthcare, 5 (1). Video-recordings of 21 encounters (RN and Pediatricians) Instructing approach The visual picture are used to capture an overview of the child’s situation. Inviting approach Children are selected domains to discuss, visual image is used as a starting point for further discussions. Engaging approach Each underlying item is explored and professionals seek a common interpretation together with the child.
8. Conclusions…. • NQR is an powerful tool in continuous improvement • Data from different perspectives are needed to understand the patients health condition • To promote involvement is a core aspect of healthcare and needs attention when healthcare delivery is developing in the future

Editor's Notes

First, I’d like to introduce myself. I have been working as a registered nurse and a certified pediatric nurse nearly twenty years. The latest five years, I have been working at the regional competence center for national quality registries with special focus on patient reported outcome measures for children with long-term conditions and how to use this kind of measures within the registries. Now I also work as a senior lecturer at the department of nursing at the school of health science, Jönköping University.

This presentation is about part of my thesis work that involves Swedish pediatric national quality registries. Since I don’t know how familiar you are with these registries I will introduce you shortly to what the quality registries are about and how these registries could be used. Then I will give you an example from one of these registries that I have been working with, the Swedish pediatric rheumatology registry and how to use dashboards from the registry as a part of the encounter with the child during their visit at the clinic. So my perspective is on the microlevel, where we meet the patient and what happens when we introduce and use the quality registry at this level.
The national quality registries have been developed since the middle of the seventies aiming to learn and continuous improve the care for specific groups of patients by gathering data. This is enabling us to compare and follow up our results from different regions in Sweden. As a citizen you can find out if your particular hospital is reaching the standards of care for example by the web-site “Care in numbers” where you can find indicators from now 50 different kinds of registries and the results from 105 different hospitals around Sweden which is collected in 435 different indicators.

The registries are driven by professional groups and are operating around the country and are fostered by patient data regulation and an indirect control by a combination of government funding and professional self-governance. The registries are more or less national in their coverage and there are two central purposes for the registries. First, to be used to guide and evaluate improvement efforts based on the knowledge of what needs to be changed and how to achieve this. The second aim is to be used for research.
The vision for the Swedish national quality registries have been defined as follows:
My interpretation of this vision is that the best possible health, care and welfare is reached by working together. This is including the patient and his/her family. When it comes to living with long-term conditions the patient is the expert. Of 365 days of the year the patient is visiting the healthcare about 2-4 days. The rest of the year they need to be able to cope with their condition and try to live as normal as possible despite their condition. So how do we collect that kind of data that can help us to understand and be able to support our patients better?

My answer is to use the clinical value compass to guide us when selecting the type of data.
This is one example from the Swedish pediatric rheumatology registry that I have been working with for several years. From the evidence-based knowledge, we know that specific clinical measures are needed when following this kind of condition. We also know that there are complications from having the disease and treatment which also is important to follow up. This is exemplified by the clinical outcomes in this picture. Some example of functional outcomes are pain assessment and quality of life assessment. This is particularly important for these young persons who have been diagnosed with arthritis. Problems with fatigue, pain and discomfort may affect their ability to be in school and affects their overall quality of life. The satisfaction is measured with one simple question that the patient foundation “Young with arthritis'” have chosen. The answer is only yes or no with comments. Finally, the cost can be measured by hospital admissions and if the child have been able to be in school or not.

The clinical value compass have been used as a tool when selecting appropriate measures in the registry. The pain assessment and the assessment of quality of life is patient reported, therefore we used an feed-forward system, that is integrated into the process of care delivery. The patient is answering to the questions before visiting the clinic, often during the waiting time before the consultation. The clinics used tablets or computers so that the answers easily can be downloaded into the system. Previously entered data is then compiled into a summary page, a dashboard with graphical presentations of the patients health status and other variables followed over time.
This is a picture of the dashboard used in the registry for children with arthritis. As you can see, all data for this particular patient is collected at one site and can easily be used during the conversation with the child during the encounter. The results of the quality of life instrument is described in different dimensions with a color that indicate the results, green is good and red is indicating worse QOL. Each dimension have a mean score, but the provider may want to go further and explore each item in the quality of life instrument, and the child’s answer can easily be detected when they click on the ”DISABKIDS button”. The answers can be changed if it appears that the child have misinterpreted a question.

So my questions for evaluating this implementation of this instrument was to understand and explore children’s experiences of answering to this kind of instrument (health-related quality of life) before their consultation and then to investigate how professionals used this kind of information when encountering the children.
The first question was explored by individual interviews with 25 children in the age between 10 to 17 years. After a content analysis of the interviews the results revealed two main themes: Providing insights about my health which constitute a motivation for change and Encouraging if outcomes are requested and discussed with professionals.

The children described that the assessment was a way for them to understand more about their health and what they could do by themselves to improve their health. When they had answered in several occasions they could easily detect variations over time and understood how this could be related to changes in treatment for example.

Another central theme was the ability to share with their provider, by sharing and having feedback which could imply a sense of support. This was also leading the child to receive cause-related explanation related to their condition given by the professional. A 17 year old girl said; “its worthwhile to answer to this questions when I can discuss my results with the nurse, and this is not just something that ends up in a registry somewhere”
The second question about how the professionals were using this instrument like an assessment tool was explored by analyzing vide-recorded consultations at different departments (from three different sites). The video-recordings was also analyzed by content analyses and revealed three different approaches that the professionals were using. The approaches were built on different strategies that the professionals used and I have chosen to show you the approaches and the particular outcomes this was leading to from a child’s perspective.

The first instructing approach was a superficial use of the data from the assessment, when the summary-page showed green results the professional could express that they was satisfied with the results like you’re results are green, and that looks fine to me”. The visual image was used to capture a short description of the child’s situation.

The second approach was an inviting approach where the professionals invited the child to select domains to talk about, and in this approach the visual image was used as an starting point to reach further discussions about the child’s quality of life in specific everyday life events.

The third approach was leading to engaging the child, since each underlying item was explored and they was discussing what the common interpretation of the results could be and how to proceed to plan further care.

The conclusion is that the use of clinical dashboards and exploring the data together with the patient is important if we want to continuously improve patient care. The measuring is important, but also the feedback to our patients if we expect them to answer to this kind of instruments regularly. We also need to put every aspect into context, what is this meaning for the patient, and what is this meaning for us as professionals?

Perspective on network based improvement: using health-related quality of life instruments for children with long term conditions

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Perspective on network based improvement: using health-related quality of life instruments for children with long term conditions

Editor's Notes