What is Health Services Research?

Health Services Research is "a multidisciplinary research area that describes health care services and their context [...], that studies the implementation of new health care concomitantly and that evaluates the effectiveness of new health care structures and processes under routine conditions." (Pfaff, 2003, originally in German, translation carried out by DKG). Health Services Research is thus essential in further developing the care of cancer patients.

Health Services Research in certified centres

Certified cancer centres are well suited to conduct (health services) research, providing various uniform documentation standards (indicator sheet, quality indicators, clinical cancer registry) and an infrastructure that enables research (cf Inter-institutional requirement for study participation). The data collected during certification are regularly published in the annual reports. In addition to the annual reports in German and English, analyses on specific topics are published in scientific journals. Furthermore, the department of certification initiates or takes part in research projects in collaboration with universities and other partners.

Ongoing Projects of the Department of Certification

PCO

Prostate cancer is the most common cancer in men worldwide. Common complications after treatment include urinary incontinence, bowel problems, erectile dysfunction and psychological discomfort. Major outcome differences are suspected worldwide. The multinational PCO study (Prostate Cancer Outcomes - Compare & Reduce variation) includes centres from 12 countries, 24 of the participating centers are DKG-certified. Other participating centers come from Australia, the USA, Italy and the United Kingdom, to mention only a few. Participating centres systematically record clinical and patient reported endpoints (Patient Reported Outcomes - PROs) for localised prostate cancer. Results are compared across centres and countries to identify differences and to provide hints for the improvement of prostate cancer care.

Expected results include information on the quality of care in prostate cancer centres, taking into account the patient's perspective, as well as the recognition of regional / hospital-related differences and the identification of measures for quality improvement in certified centres.

Involved institutions

Deutsche Krebsgesellschaft e.V. (DKG)
Bundesverband Prostatakrebs Selbsthilfe e. V. (BPS) − German Federal Association for Prostate Cancer Self-Help
OnkoZert
DKG-certified Prostate Cancer Centres

Funding

Movember Foundation (Australia)
Förderverein Hilfe bei Prostatakrebs (FHbP)

Duration

July 2016 to June 2018, continuation planned

Contact

Dr. Christoph Kowalski (kowalski@krebsgesellschaft.de)

 

N-MALE

The most common cancer in women is breast cancer. Breast cancer in men, however, is very rare. Approximately 700 men in Germany are annually diagnosed with breast cancer. Despite the increase of studies in epidemiology, diagnosis and risk factors, data on how care is provided and on the psychosocial needs of male breast cancer patients over the course of the treatment are sparse.

The aim of N-MALE (Male breast cancer: Patients' needs in prevention, diagnosis, treatment, rehabilitation and follow-up care) is the illustration of medical and psychosocial needs of male breast cancer patients. Not only the patients’, but also the health professions’  (breast cancer specialists, family physicians, nurses, rehabilitation physicians, physiotherapists, social workers and psycho-oncologists) view will be represented in the study.

The study follows a qualitative research approach. The patient perspective is illustrated based on semi-standardised qualitative interviews. The perspective of the health professions involved is detected via focus group discussions. Recruitment of patients takes place via the DKG-certified Breast Cancer Centres. Leading partner of the study is the Research Centre for Health Communication and Health Care Research of the Clinic for Psychosomatic Medicine and Psychotherapy at the University Hospital of Bonn (Prof. Dr. Nicole Ernstmann).

Study results will be made available to the participating Breast Cancer Centres and organised self-help groups via fact and prompt sheets. In addition, a national transfer workshop for Breast Cancer Centres and patients is planned.

 

Involved institutions

Universitätsklinikum Bonn (UKB) − University Hospital Bonn
Deutsche Krebsgesellschaft e.V. (DKG)
Netzwerk Männer mit Brustkrebs e.V. − Network Men with Breast Cancer
Ludwig-Maximilian-Universität München (LMU) − University Munich
Uniklinik Köln (UKK) − University Hospital Cologne

Funding

Deutsche Krebshilfe (DKH) − German Cancer Aid

Duration

April 2016 to April 2018

Contact

Dr. Christoph Kowalski (kowalski@krebsgesellschaft.de)

 

 

Evaluation of the StudyBox

The StudyBox is an internet-based platform for patients and physicians. It provides an overview of studies conducted in certified centres. Studies registered in the StudyBox undergo a peer-review process; they are accredited and listed in the StudyBox if they are of high quality and of particular importance for certified centres. Evaluation and accreditation of the studies is carried out by members of the Study Board who are appointed by the Certification Commission for Visceral Oncology Centres and by representatives of the ADDZ (Association of German Colorectal Cancer Centres) and the DKG.

In the pilot phase the StudyBox recognises studies at DKG-certified Colorectal Cancer Centres. Using the search function in the StudyBox, disease- and stage-specific studies can be identified. The StudyBox also shows which studies are currently recruiting patients and which are already closed. Click here for StudyBox: www.studybox.de

Involved institutions

Deutsche Krebsgesellschaft  (DKG)
OnkoZert
Arbeitsgemeinschaft deutscher Darmkrebszentren (ADDZ) − Association of German Colorectal Cancer Centers

Funding

Bundesministerium für Gesundheit (BMG) - German Ministry for Health

Duration

March 2015 to February 2017

Publications

Kowalski C, Jena S, Kliemann D, Antes G. (2015). Zur Diskussion: Studienregister fur die Onkologie nutzen - StudyBox und Deutsches Register Klinischer Studien. Z Evid Fortbild Qual Gesundhwes 109(6): 431-436.

Kowalski C, Ferencz J, Benz S, Post S, Seufferlein T, Stinner B, Penzes O, Wesselmann S. (2016) Hemmende und fördernde Faktoren bei der Durchführung von Studien – Die Sicht von Darmkrebszentrumskoordinatorinnen und –koordinatoren. Zeitschrift für Gastroenterologie 54: 409–415.

Contact

Dr. Christoph Kowalski (kowalski@krebsgesellschaft.de)

 

 

PIAT

The aim of the PIAT study (breast cancer patients' information and training needs), which was conducted under the auspices of the Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR, Prof. Holger Pfaff), was the detection of the need for information and training to improve the health literacy of patients with breast cancer.

In order to elucidate this need, patients were surveyed using postal questionnaires at three time points in a prospective multicenter cohort survey. Furthermore, Breast Cancer Center representatives were surveyed to identify process and structure specifics of the organisation. Study results should suggest ways to improve the health literacy of patients and to promote the development of customised information and training for those affected.

48 Breast Cancer Centers with a total of 60 locations took part in the study nationwide. The PIAT study determined that breast cancer patients have diverse information needs and a health literacy that is "good to average". Patient trainings were hardly known and used by patients.

Involved institutions

Deutsche Krebsgesellschaft e.V. (DKG)
Institut für Medizinische Soziologie, Versorgungsforschung und Rehabilitationswissenschaft (IMVR) der Universität zu Köln − Institute of Medical Sociology, Health Services Research, and Rehabilitation Science
Frauenselbsthilfe nach Krebs − Women’s Self-Help Following Cancer
Pädagogische Hochschule Freiburg − University of Education Freiburg

Funding

Bundesministerium für Gesundheit (BMG) − German Ministry for Health

Duration

March 2012 to March 2015

Publications

Halbach SM, Ernstmann N, Kowalski C, Pfaff H, Pförtner TK, Wesselmann S, Enders A. Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment. Patient Educ Couns, DOI: 10.1016/j.pec.2016.06.028.

Halbach SM, Schmidt A, Kowalski C, Pfaff H, Wesselmann S, Pförtner TK, Wirtz M, Ernstmann N. (2016). Health literacy and fear of cancer progression in elderly women newly diagnosed with breast cancer-A longitudinal analysis. Patient Educ Couns 99(5): 855-862.

Schmidt A, Ernstmann N, Wesselmann S, Pfaff H, Witz M, Kowalski C. (2016). After initial treatment for primary breast cancer: information needs, health literacy, and the role of health care workers. Support Care Cancer 24(2): 563-571.

Schmidt A, Kowalski C, Pfaff H, Wesselmann S, Wirtz M, Ernstmann N. (2015). The Influence of Health Literacy on Information Needs Among Women Newly Diagnosed With Breast Cancer, With Special Reference to Employment Status. J Health Commun 20(10): 1177-1184.'

Schmidt A, Wesselmann S, Kowalski C. (2015). Informationsbedürfnisse und Informationsprozesse in zertifizierten Zentren am Beispiel der Brustkrebszentren – Ergebnisse der PIAT-Studie. DKG Forum 30: 218-223.

Kowalski C, Lee, S-YL, Schmidt A, Wesselmann S, Wirtz MA, Pfaff H, Ernstmann N. (2015). The health-literate health care organization 10 item questionnaire (HLHO-10): Development and validation. BMC Health Services Research 15: 47.

Contact

Dr. Christoph Kowalski (kowalski@krebsgesellschaft.de)

Completed Projects of the Department of Certification

SOBOP
Social work is an important element in the care of cancer patients and their families and friends. In the SoBoP study (social services care for oncology patients in Germany), social workers active in in- and outpatient care were surveyed to determine the specific content of their work and the amount of time spent on the care of cancer patients. Furthermore, working conditions and work-related resources were assessed.
The survey was conducted among members of the German Association for Social Work in Health Care (DVSG) that are actively involved in clinical social work. A cross-sectional online questionnaire was administered.
The study results provide an overview over work contents and job-related resources and burdens of the respondents. First results are published in the Forum Social Work + Health and can be downloaded for free here:

Involved institutions
Deutsche Vereinigung für Soziale Arbeit im Gesundheitswesen (DVSG) − German Association for Social Work in Health Care
Deutsche Krebsgesellschaft e.V. (DKG) - German Cancer Society
Institut für Medizinische Soziologie, Versorgungsforschung und Rehabilitationswissenschaft (IMVR) der Universität zu Köln − Institute of Medical Sociology, Health Services Research, and Rehabilitation Science

Funding
None.

Duration
September 2014 to September 2016

Publications
Kowalski C, Nitzsche A, Adolph H, Walther J, Rösler M. (2016) Sozialarbeiterische Beratungsinhalte bei onkologischen Patienten – Ergebnisse der DVSG-Mitglieder-Befragung 2016 Teil III. Forum Sozialarbeit + Gesundheit 3/2016: 34-39.

Nitzsche A, Adolph H, Kowalski C. (2016) Ressourcen und Belastungen in der Sozialen Arbeit im Gesundheitswesen – Ergebnisse der DVSG-Mitglieder-Befragung. Forum Sozialarbeit + Gesundheit 2/2016: 28-32.

Adolph H, Kowalski C, Nitzsche A, Weis I. (2016) DVSG-Mitgliederbefragung 2015. Teil I – Fallbezogene und nicht-fallbezogene Tätigkeiten in Beratung. Forum Sozialarbeit + Gesundheit 1/2016: 41-43.

Contact
Dr. Christoph Kowalski (kowalski@krebsgesellschaft.de)