Article
Holistic needs assessment in brain tumour patients – optimisation of the Distress Thermometer in Germany (HEAT-study)
Bedarfserfassung optimieren – die Adaptation des Belastungsthermometers für Hirntumorpatienten in Deutschland (HEAT-Studie)
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Authors
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Mirjam Renovanz
- Universitätsklinikum Tübingen, Tübingen, Deutschland
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Carina Knuth
- Christian-Albrecht-Universität zu Kiel, Psychologie, Kiel, Deutschland
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Matthias Damm
- Universitätsklinikum Tübingen, Tübingen, Deutschland
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Daniel Linden
- Universitätsklinikum Tübingen, Tübingen, Deutschland
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Jan Coburger
- Universitätsklinikum, Neurochirurgie, Ulm, Deutschland
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Ghazaleh Tabatabai
- Universitätsklinikum Tübingen, Tübingen, Deutschland
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Florian Ringel
- Universitätsmedizin Mainz, Neurochirurgische Klinik, Mainz, Deutschland
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Maximilian Mehdorn
- Mehdorn Konsilium, Kiel, Deutschland
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Simone Goebel
- Christian-Albrecht-Universität zu Kiel, Psychologie, Kiel, Deutschland
| Published: | June 26, 2020 |
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Outline
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Objective: Holistic Needs Assessment (HNA) is widely used in cancer patients to determine needs. However, generic HNA tools may not reflect the unique symptom profile of brain tumor patients (BTPs) limiting their usability. Therefore, we aim to adapt the Distress Thermometer (DT) for BTPs, which is a screening tool including a numerical rating scale (1-10, cut-offs indicating relevant distress ≥4-6) and a 40-item problem list.
Methods: The multicenter study included four university hospitals. We first performed an analysis with regard to frequency of indicated topics and evaluated their relevance for patients’ psychosocial wellbeing via Pearson correlations with the DT score. Second, a qualitative interview with BTPs and experts, as well as an online expert survey were performed in order to search for missing but relevant items. Combining these results, we created a preliminary adapted version of the tool for HNA in BTPs.
Results: In the first part, data of n = 670 BTPs were analyzed. A total of 14/40 (35%) of the items was endorsed by less than 10% of the BTPs. However, some of these rarely reported problems were of relevance for patients’ psychosocial wellbeing as indicated by significant correlations between the respective item and the DT score (e.g. breathing, r = .125; p = .001).
In the second part, intensive literature search, qualitative interviews (QI) conducted with n= 10 BTPs revealed the following missing topics: "inability to work, isolation, dizziness, dependency on others". In QI with n= 4 experts inter alia the following items were noticed: "social isolation, dependency on others, future uncertainty, loss of sensory functions".
A total of n= 63 doctors and n= 39 psychologists participated in the online expert survey including n= 44 items. Most relevant new topics were: "dependency, planning, social isolation, mood swings, shock/trauma, swallowing". Simultaneously to BTPs results, a bimodal distribution of the topic "breathing", "opstipation" and "nutrition" was observed indicating that these items may be applicable only for specific situations (e.g. under chemotherapy).
Conclusion: Overall, the problem list of the DT was adapted for BTPs, aiming to enable the targeted assessment of patients’ specific problems and needs. In the next step, a multicenter application as well as a tumor entity specific and cross-cultural validation is necessary to meet the requirements of clinical daily praxis and different social systems.
