The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany
Abstract Background Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are tools for assessing outcomes of and experiences with health care from the patient’s perspective. In Germany, PROMs are widely used in research for evaluating patient outcomes and qualit...
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| Format: | Article |
| Language: | English |
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BMC
2019-11-01
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| Series: | BMC Health Services Research |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12913-019-4646-4 |
| _version_ | 1818347695425716224 |
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| author | Christiane Rudolph Gitte Stentebjerg Petersen Ron Pritzkuleit Hans Storm Alexander Katalinic |
| author_facet | Christiane Rudolph Gitte Stentebjerg Petersen Ron Pritzkuleit Hans Storm Alexander Katalinic |
| author_sort | Christiane Rudolph |
| collection | DOAJ |
| description | Abstract Background Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are tools for assessing outcomes of and experiences with health care from the patient’s perspective. In Germany, PROMs are widely used in research for evaluating patient outcomes and quality of care. However, the application of PREMs is rather scant, especially in oncology. The study aimed to assess the feasibility of patient-centred quality evaluation in oncological care in Germany using the German adaptation of the Danish National Cancer Patient Questionnaire. This questionnaire is a PREM/PROM-tool addressing patients of all cancer sites and covering the entire cancer patient pathway. Methods The Danish National Cancer Patient Questionnaire was translated into German via forward-backward translation. Face-validity was tested among three cancer patients in a conventional pre-test. The German adaptation contains 99 questions. A pilot test was carried out among 245 newly diagnosed breast and colorectal cancer patients in the German federal state Schleswig-Holstein. Patients were recruited via clinics participating in the Oncological Care Registry (12 specialised units in seven hospitals) and contacted six to nine months after diagnosis. Response behaviour and response patterns were compared to the Danish study population (n = 1964). Results The willingness among clinicians to support patient recruitment as well as the response rate of patients to the questionnaire was high (65%). Moreover, response behaviour and response patterns of German and Danish patients were consistent. Despite the generally good response behaviour of patients to the single items, the authors observed that questions assessing the diagnostic process did not fully capture German pathways. Only 19.3% of the German patients stated that their diagnostic process was initiated by a visit to a general practitioner (GP) in contrast to 52% in Denmark. The assessment of patient experiences in the diagnostic phase heavily focuses on experiences in general practice, which does not seem appropriate in the German health care setting. Conclusion The translation was successful, and the feasibility of a future large-scale study within existing structures is given. However, some modifications of questions heavily related to the Danish health care system, especially referring to the diagnostic phase, are necessary. |
| first_indexed | 2024-12-13T17:38:15Z |
| format | Article |
| id | doaj.art-d7b2b10e04b041b09999da12a0b8d79e |
| institution | Directory Open Access Journal |
| issn | 1472-6963 |
| language | English |
| last_indexed | 2024-12-13T17:38:15Z |
| publishDate | 2019-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Health Services Research |
| spelling | doaj.art-d7b2b10e04b041b09999da12a0b8d79e2022-12-21T23:36:51ZengBMCBMC Health Services Research1472-69632019-11-0119111310.1186/s12913-019-4646-4The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern GermanyChristiane Rudolph0Gitte Stentebjerg Petersen1Ron Pritzkuleit2Hans Storm3Alexander Katalinic4Institute for Cancer Epidemiology, University of LübeckDanish Cancer SocietyInstitute for Cancer Epidemiology, University of LübeckDanish Cancer SocietyInstitute for Cancer Epidemiology, University of LübeckAbstract Background Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are tools for assessing outcomes of and experiences with health care from the patient’s perspective. In Germany, PROMs are widely used in research for evaluating patient outcomes and quality of care. However, the application of PREMs is rather scant, especially in oncology. The study aimed to assess the feasibility of patient-centred quality evaluation in oncological care in Germany using the German adaptation of the Danish National Cancer Patient Questionnaire. This questionnaire is a PREM/PROM-tool addressing patients of all cancer sites and covering the entire cancer patient pathway. Methods The Danish National Cancer Patient Questionnaire was translated into German via forward-backward translation. Face-validity was tested among three cancer patients in a conventional pre-test. The German adaptation contains 99 questions. A pilot test was carried out among 245 newly diagnosed breast and colorectal cancer patients in the German federal state Schleswig-Holstein. Patients were recruited via clinics participating in the Oncological Care Registry (12 specialised units in seven hospitals) and contacted six to nine months after diagnosis. Response behaviour and response patterns were compared to the Danish study population (n = 1964). Results The willingness among clinicians to support patient recruitment as well as the response rate of patients to the questionnaire was high (65%). Moreover, response behaviour and response patterns of German and Danish patients were consistent. Despite the generally good response behaviour of patients to the single items, the authors observed that questions assessing the diagnostic process did not fully capture German pathways. Only 19.3% of the German patients stated that their diagnostic process was initiated by a visit to a general practitioner (GP) in contrast to 52% in Denmark. The assessment of patient experiences in the diagnostic phase heavily focuses on experiences in general practice, which does not seem appropriate in the German health care setting. Conclusion The translation was successful, and the feasibility of a future large-scale study within existing structures is given. However, some modifications of questions heavily related to the Danish health care system, especially referring to the diagnostic phase, are necessary.http://link.springer.com/article/10.1186/s12913-019-4646-4Breast cancerColorectal cancerPatient-centered carePatient preferencePatient satisfactionQuality of health care |
| spellingShingle | Christiane Rudolph Gitte Stentebjerg Petersen Ron Pritzkuleit Hans Storm Alexander Katalinic The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany BMC Health Services Research Breast cancer Colorectal cancer Patient-centered care Patient preference Patient satisfaction Quality of health care |
| title | The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany |
| title_full | The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany |
| title_fullStr | The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany |
| title_full_unstemmed | The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany |
| title_short | The acceptance and applicability of a patient-reported experience measurement tool in oncological care: a descriptive feasibility study in northern Germany |
| title_sort | acceptance and applicability of a patient reported experience measurement tool in oncological care a descriptive feasibility study in northern germany |
| topic | Breast cancer Colorectal cancer Patient-centered care Patient preference Patient satisfaction Quality of health care |
| url | http://link.springer.com/article/10.1186/s12913-019-4646-4 |
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