The term 'individualised therapy' is nowadays frequently used. However, quite often, this term refers exclusively to the incorporation of molecular data for prognosis or prediction and does not include the integration of patient-related factors like health-related quality of life (HRQOL). Based on my 20 year experience in the treatment of MDS-patients I have come to realize that the perception and opinion of patients are in fact quite relevant for their commitment to treatment and the clinical outcomes. Assessment of HRQOL represents one of these so called patient-reported outcomes (PROs).

I constantly question why aspects and perspectives of patients are not regularly included in therapy planning and outcome evaluation and wonder how to improve this situation.

Reasons for the integration of assessment of HRQOL in patients with MDS

1. Patients/relatives feeling, opinion and wishes form the basis for discussions with patients / relatives and for individualized decision making
2. HRQOL represents an essential part of personalized treatment algorithms
3. Perception of patients and physicians are different, thus assessment of patients’ is essential
4. Assessment of HRQOL forms the basis for identification of weaknesses and strengths and of patients
5. HRQOL has been shown in fact to predict clinical outcome and represents a valid prognostic parameter!
6. HRQOL represents an excellent endpoint, as goal of therapeutic options is to stabilize or improve the HRQOL of patients

Barriers to assess HRQOL

Some aspects may be cited, all of which may be logical:

1. A culture of paternalism (doctor knows best)
2. HRQOL is not included so far in the commonly deployed risk scores
3. Enthusiasm about progress in molecular profiling dwarfs the enthusiasm for patient-related factor consideration
4. Lack of knowledge in health care professionals for the performance and interpretation of HRQOL-scores
5. Lack of resources to perform HRQOL scoring
6. Reports on HRQOL in clinical studies are often not part of the first reports at prestigious meetings and in international journals, but are rather often published in subsequent publications or not all

 How to improve and to proceed?

1. Integrate PROs particularly HRQOL in assessment and therapy planning in patients with MDS
2. Increase participation of patients in decision making by the integration and discussion of HRQOL-scoring; stakeholders including proxys and patient organisations should be involved in the empowerment of patients
3. Authorities, sponsors and principal investigators should continue to include PROs in clinical studies and should report these data in primary reports
4. Authorities should continue to include PROs as an essential part of registration processe
5. Educate and train health-care professionals in the use and interpretation of HRQOL-scores
6. Develop and propagate HRQOL-scores, which are user friendly in the application and interpretation of results
7. Include HRQOL in the development of prognostic scores

Questions for you, commenters

1. I would be interested to understand if and how this issue is tackled in your place?
2. I would be interested to understand how this issue should be addressed in your opinion? Any ideas how to improve integration of  HRQOL in daily practice and in clinical studies?
3. How to raise awareness for HRQOL in the MDS-community?

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