Background
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data should be collected completely and accurately with little effort [10],
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data scoring and comparisons to previously collected information should be automated and take place during the office visit [11],
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results should be presented in a user-friendly format, so that patients and physicians can easily understand and discuss them [12],
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results should be assigned to the respective electronic patient record [13] to allow easy monitoring and follow-up over time.
Methods
Setting
Study population and recruitment
Practices
Patients
Instruments and technical procedures
Electronic questionnaires
Technical integration
Training
Data collection
Electronic HRQoL assessment
Telephone interviews
Data analysis
Results
Sample
Characteristics | Physicians (n = 17) | Assistants (n = 27) | Patients (n = 280) |
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Female; n (%) | 3 (18) | 27 (100) | 174 (62) |
Age; mean (± SD) | 50 (± 8) | 33 (± 12) | 62 (± 13) |
Years in (this particular) practice; mean (± SD) | 13 (± 9) | 7 (± 6) | 13 (± 10) |
Computer literacy; n (%) | |||
- skilled user | 15 (88) | 24 (89) | 64 (23) |
- some familiarity | 2 (12) | 3 (11) | 45 (16) |
- novice | - | - | 35 (13) |
- none | - | - | 134 (48) |
Duration of patients' disease (years); mean (± SD) | - | - | 14 (± 13) |
Severity of patients'disease; n (%) | - | - | |
- minor | - | - | 75 (27) |
- intermediate | - | - | 107 (38) |
- serious | - | - | 83 (30) |
- no information/I don't know | - | - | 15 (5) |
Feasibility and results of the electronic HRQoL assessments
How did GPs, practice assistants and patients evaluate the QL-recorder?
Participants' ratings
Answers to open questions
Category* | Example | Frequency** |
---|---|---|
Contribution to physicians' understanding of patients' personal condition and circumstances | „The doctor can get a comprehensive overview, because all these different aspects are being asked." | 130 (46%) |
Focus on patient-physician communication | "If you have answered the questions on the PC, the doctor already knows what to ask in more detail." | 114 (41%) |
Additional information about current well-being | „The doctor knows me quite well, but it is helpful for him to know how I'm actually doing." | 74 (26%) |
Information about course of diseases | „If you go to the doctor next time, he can see the changes and compare these to earlier assessments." | 73 (26%) |
Impulse for self-management | "You can have a look at yourself and think about what you can do by yourself." | 60 (21%) |
Expression of interest and care | "It makes you feel very sheltered." | 50 (18%) |
Feedback to adapt treatment | "The doctor gets more information to evaluate the treatment." | 47 (17%) |
Efficient allocation of resources | "I have time to answer the questions just sitting in the waiting room and the doctor also gains time." | 29 (10%) |
Information about psychological well-being | "You can figure out better, how one feels inside." | 9 (3%) |
Category* | Example | Frequency** |
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Focus on patient-physician communication (e.g. on sensitive topics) | „If you see that something is getting worse, it is easier to start talking about the problem" | 13 GPs, 3 PA |
Information about course of diseases | „The progression over time is most interesting" | 11 GPs, 3 PA |
Standardised information about current well-being | „It provides comparable results and facilitates documentation" | 11 GPs, 1 PA |
Contribution to physicians' understanding of patients' personal condition and circumstances | „It gives a holistic view and information, which I otherwise would miss" | 9 GPs, 3 PA |
Aid for adaptation of medical treatment | „It helps to recognise shortcomings in current therapy" | 8 GPs, 2 PA |
Commitment to patient centred care | „Patients get the impression of being taken seriously" | 6 GPs, 12 PA |
Self-reflection and compliance of patients | „Patients can have a look at the results and think about it" | 2 GPs, 4 PA |
Professionalism and marketing | „It supports the professional appearance of the practice" | 5 GPs |
Resource management | „You get more information in less time and thus gain time for counselling" | 4 GPs |
Structural requirements for routine HRQoL assessment
First telephone interview
Category* | Example | Frequency** |
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Lack of practice or routine | „There was a lack of routine or discipline – always to think about it" | 13 |
Lack of time or resources | "We have only one practice assistant and little free time" | 13 |
Unfamiliar graphics | „The results have to be intuitively interpretable at a glance so there is no need for the GP to explain it to the patient" | 7 |
Acute reasons for consultation | „I didn't do it if there was another reason for the consultation, e.g. athlete's foot." | 6 |
Technical problems | "There were sometimes problems concerning the wireless LAN" | 6 |
Undefined consequences | „I didn't know what I should do with the results" | 3 |
Difficulties in understanding (elderly/foreign patients) | "Foreign patients think that they don't understand it" | 3 |
Second telephone interview
Discussion
Participation and practice sample
Technical feasibility
The user perspective and utility of results
Barriers towards electronic HRQoL assessment
Strengths and limitations
Strengths
Limitations
Conclusion
Implications for research and practice
Recommendations
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Training: Though most participants appreciated the 1-hour training, it might be useful to accompany practice assistants during the first days of electronic HRQoL assessment. This could help to bridge the gap between theory and practice, as HRQoL issues have rarely been part of the medical curriculum [34].
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Printout and interpretation: Additional verbal summaries might be easier to understand compared to graphics. As most HRQoL scales did not exceed the threshold of 50 on average, this reference value may be adequate for cancer patients [35] but does not provide sufficient orientation for general practice.
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Adaption to local needs: Practitioners may be interested in selected aspects of HRQoL depending upon their patient clientele or upon the portfolio of supportive measures they can actually provide. For routine care, questionnaires and result presentations should be tailored to these needs to increase the relevance perceived by the GP, and the probability that documented impairments have actual medical consequences.
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Informed consent: Obtaining patients' written informed consent put an extra burden on practice assistants. In order to make the procedure more convenient, data collection would need to be regarded as a standard component of medical service [36], so that written informed consent would not be required for each assessment.
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Incentives: GPs and practice-assistants received only a small financial allowance within this study. Lack of remuneration for HRQoL assessment and discussion of results is regarded as a barrier to its implementation. Also, regular discussion groups of physicians addressing HRQoL topics might be helpful [20], but could not be realised in our project since participating practices were located in distant German regions.