Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany
Abstract
:1. Introduction
1.1. Background
1.2. The Integrated Cross-Sectoral Psycho-Oncological (isPO) Program
1.3. Aim
2. Materials and Methods
2.1. Optimization Approach
2.2. Roles and Competences
2.3. The PIM Optimization Process
2.4. Ethical Considerations
3. Results
3.1. Assessment of the Initial IsPO-PIM
3.2. Development of the Patient Information Strategy
3.3. Optimizing the Initial IsPO PIM
3.4. Designing the New IsPO PIM
4. Discussion
4.1. Designing and Optimizing High-Quality PIM Bottom-Up
4.2. Strengths and limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Patient Information Folder: Key Optimization Recommendations (Part 2 of UPIM-Check) | |
---|---|
Perspective | Summary of Key Optimization Recommendations |
isPO service providers (psychotherapist and case manager) |
|
End-users (Cancer survivors) |
|
Target Group: middle-aged man Individual Characteristics: | ||
| ||
Name: Albert | Age: 56 Years | Family status: married, 3 adult children |
Gender: masculine | Occupation: Head of car dealership, car mechanic (master) | Education level: secondary school leaving certificate |
Living environment:
| ||
Interests and habits:
| ||
Personal goals:
| ||
Frustration and Limitation due to cancer diagnosis:
|
References
- Protheroe, J.; Estacio, E.V.; Saidy-Khan, S. Patient information materials in general practices and promotion of health literacy: An observational study of their effectiveness. Br. J. Gen. Pract. 2015, 65, e192–e197. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Sustersic, M.; Tissot, M.; Tyrant, J.; Gauchet, A.; Foote, A.; Vermorel, C.; Bosson, J.L. Impact of patient information leaflets on doctor-patient communication in the context of acute conditions: A prospective, controlled, before-after study in two French emergency departments. BMJ Open 2019, 9, e024184. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Hoffmann, T.; Worrall, L. Designing effective written health education materials: Considerations for health professionals. Disabil. Rehabil. 2004, 26, 1166–1173. [Google Scholar] [CrossRef] [PubMed]
- Sacristán, J.A.; Aguarón, A.; Avendaño-Solá, C.; Garrido, P.; Carrion, J.; Gutierrez, A.; Kroes, R.; Flores, A. Patient involvement in clinical research: Why, when, and how. Patient Prefer. Adherence 2016, 10, 631–640. [Google Scholar] [CrossRef] [Green Version]
- Arthur, V.A. Written patient information: A review of the literature. J. Adv. Nurs. 1995, 21, 1081–1086. [Google Scholar] [CrossRef]
- Alexander, J.W.; Karantanis, E.; Turner, R.M.; Faasse, K.; Watt, C. Patient attitude and acceptance towards episiotomy during pregnancy before and after information provision: A questionnaire. Int. Urogynecol. J. 2020, 31, 521–528. [Google Scholar] [CrossRef]
- Herm, K.; Linden, M. Qualitätssicherung von schriftlichen Patienteninformationen. Psychother. Psychosom. Med. Psychol. 2013, 63, 176–184. [Google Scholar] [CrossRef]
- Steckelberg, A.; Berger, B.; Köpke, S.; Heese, C.; Mühlhauser, L. Kriterien evidenzbasierter Patienteninformationen. Z. Ärztl. Fortbild. Qual. 2005, 99, 343–351. [Google Scholar]
- Estey, A.; Musseau, A.; Keehn, L. Patient’s understanding of health information: A multihospital comparison. Patient Educ. Couns. 1994, 24, 73–78. [Google Scholar] [CrossRef]
- Rozmovits, L.; Ziebland, S. What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Patient Educ. Couns. 2004, 53, 57–64. [Google Scholar] [CrossRef]
- Rudd, R.E. Health literacy skills of US adults. Am. J. Health Behav. 2007, 31 (Suppl. 1), S8–S18. [Google Scholar] [CrossRef]
- Finnie, R.K.C.; Felder, T.M.; Linder, S.K.; Mullen, P.D. Beyond reading level: A systematic review of the suitability of cancer education print and Web-based materials. J. Cancer Educ. 2010, 25, 497–505. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Shoemaker, S.J.; Wolf, M.S.; Brach, C. Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Educ. Couns. 2014, 96, 395–403. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Lühnen, J.; Albrecht, M.; Mühlhauser, I.; Steckelberg, A. Leitlinie Evidenzbasierte Gesundheitsinformation. 2017. Available online: http://www.ebm-netzwerk.de/was-wir-tun/publikationen/ (accessed on 15 April 2020).
- Charnock, D.; Shepperd, S.; Needham, G.; Gann, R. DISCERN: An instrument for judging the quality of written consumer health information on treatment choices. J. Epidemiol. Community Health 1999, 53, 105–111. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Clayton, L.H. TEMPtEd: Development and psychometric properties of a tool to evaluate material used in patient education. J. Adv. Nurs. 2009, 65, 2229–2238. [Google Scholar] [CrossRef] [PubMed]
- Demir, F.; Ozsaker, E.; Ilce, A.O. The quality and suitability of written educational materials for patients*. J. Clin. Nurs. 2008, 17, 259–265. [Google Scholar] [CrossRef] [PubMed]
- van Beusekom, M.M.; Kerkhoven, A.H.; Bos, M.J.W.; Guchelaar, H.-J.; van den Broek, J.M. The extent and effects of patient involvement in pictogram design for written drug information: A short systematic review. Drug Discov. Today 2018, 23, 1312–1318. [Google Scholar] [CrossRef]
- Williams, A.M.; Muir, K.W.; Rosdahl, J.A. Readability of patient education materials in ophthalmology: A single-institution study and systematic review. BMC Ophthalmol. 2016, 16, 133. [Google Scholar] [CrossRef] [Green Version]
- Doak, L.G.; Doak, C.C.; Meade, C.D. Strategies to improve cancer education materials. Oncol. Nurs. Forum 1996, 23, 1305–1312. [Google Scholar]
- Jewitt, N.; Hope, A.J.; Milne, R.; Le, L.W.; Papadakos, J.; Abdelmutti, N.; Catton, P.; Giuliani, M.E. Development and Evaluation of Patient Education Materials for Elderly Lung Cancer Patients. J. Cancer Educ. 2016, 31, 70–74. [Google Scholar] [CrossRef]
- Spinuzzi, C. The Methodology of Participatory Design. Tech. Commun. 2005, 52, 162–174. [Google Scholar]
- Cornwall, A.J.R. What is participatory research? Soc. Sci. Med. 1995, 41, 1667–1676. [Google Scholar] [CrossRef]
- Bergold, J.; Thomas, S. Participatory Research Methods: A Methodological Approach in Motion. Forum Qual. Soc. Res. 2012, 13, 30. Available online: http://www.qualitative-research.net/index.php/fqs/article/view/1801/3334 (accessed on 16 December 2021).
- van den Muijsenbergh, M.; Teunissen, E.; van Weel-Baumgarten, E.; van Weel, C. Giving voice to the voiceless: How to involve vulnerable migrants in healthcare research. Br. J. Gen. Pract. 2016, 66, 284–285. [Google Scholar] [CrossRef] [PubMed]
- Unger, H. Community-based participatory health research: Principles and practice. Eur. J. Public Health 2019, 29 (Suppl. 4), ckz185.762. [Google Scholar] [CrossRef]
- Jenniches, I.; Lemmen, C.; Cwik, J.C.; Kusch, M.; Labouvie, H.; Scholten, N.; Gerlach, A.; Stock, S.; Samel, C.; Hagemeier, A.; et al. Evaluation of a complex integrated, cross-sectoral psycho-oncological care program (isPO): A mixed-methods study protocol. BMJ Open 2020, 10, e034141. [Google Scholar] [CrossRef]
- Kusch, M.; Labouvie, L.; Schiewer, V.; Talalaev, N.; Cwik, J.C.; Gerlach, A.L.; Krieger, T.; Dresen, A.; Pfaff, H.; Lemmen, C.; et al. Integrated, cross-sectoral psycho-oncology (isPO): A new form of care for newly diagnosed cancer patients in Germany. BMJ Open, 2021; in preparation. [Google Scholar]
- Craig, P.; Dieppe, P.; Macintyre, S.; Michie, S.; Nazareth, I.; Petticrew, M. Developing and evaluating complex interventions: The new Medical Research Council guidance. BMJ 2008, 337, a1655. [Google Scholar] [CrossRef] [Green Version]
- Krieger, T.; Salm, S.; Cecon, N.; Pfaff, H.; Dresen, A. Ergebnisbericht der Ersten Externen Formativen Evaluation des Projekts IsPO (FE 1.0): Forschungsbericht; Veröffentlichungsreihe des Instituts für Medizinsoziologie, Versorgungsforschung und Rehabilitationswissenschaft; IMVR: Cologne, Germany, 2020. [Google Scholar]
- Commodore-Mensah, Y.; Himmelfarb, C.R.D. Patient education strategies for hospitalized cardiovascular patients: A systematic review. J. Cardiovasc. Nurs. 2012, 27, 154–174. [Google Scholar] [CrossRef] [Green Version]
- Moore, G.F.; Audrey, S.; Barker, M.; Bond, L.; Bonell, C.; Hardeman, W.; Moore, L.; O’Cathain, A.; Tinati, T.; Wight, D.; et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ 2015, 350, h1258. [Google Scholar] [CrossRef] [Green Version]
- Balthasar, A. Fremd- und Selbstevaluation kombinieren: Der ‚Critical Friend Approach’ als Option. Z. Eval. 2012, 11, 173–198. [Google Scholar]
- International Collaboration for Participatory Health Research. What Is Participatory Health Research?: Position Paper No. 1. International Collaboration for Participatory Health Research, 2013. Available online: http://www.icphr.org/uploads/2/0/3/9/20399575/ichpr_position_paper_1_defintion-_version_may_2013.pdf (accessed on 15 April 2020).
- Cornwall, A. Towards Participatory Practice: Participatory Rural Appraisal and the Participatory Process. In Participatory Research in Health: Issues and Experiences; de Koning, K., Martin, M., Eds.; Vistaar Publications: New Delhi, India, 1996. [Google Scholar]
- Cvitanovic, C.; Howden, M.; Colvin, R.M.; Norström, A.; Meadow, A.M.; Addison, P.F.E. Maximising the benefits of participatory climate adaptation research by understanding and managing the associated challenges and risks. Environ. Sci. Policy 2019, 94, 20–31. [Google Scholar] [CrossRef]
- Baum, F.; MacDougall, C.; Smith, D. Participatory action research. J. Epidemiol. Community Health 2006, 60, 854–857. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Salm, S.; Mollenhauer, J.; Hornbach, C.; Cecon, N.; Dresen, A.; Houwaart, S.; Arning, A.; Göttel, A.; Schwickerath, K.; Pfaff, H.; et al. Participatory development and explorative validation of the User-friendly Patient Information Material Checklist (UPIM-Check). Int. J. Environ. Res. Public Health 2021, 18, 8773. [Google Scholar] [CrossRef]
- Clarke, V.; Braun, V. Thematic analysis. J. Posit. Psychol. 2017, 12, 297–298. [Google Scholar] [CrossRef]
- Tian, C.; Champlin, S.; Mackert, M.; Lazard, A.; Agrawal, D. Readability, suitability, and health content assessment of web-based patient education materials on colorectal cancer screening. Gastrointest. Endosc. 2014, 80, 284–290.e2. [Google Scholar] [CrossRef] [PubMed]
- O’Leary, Z. The Essential Guide to Doing Research; SAGE Publications: London, UK; Thousand Oaks, CA, USA; New Delhi, India, 2004. [Google Scholar]
- Nielsen, L. Personas—User Focused Design; Springer: London, UK, 2019. [Google Scholar]
- Krieger, T.; Salm, S.; Cecon, N.; Pfaff, H.; Dresen, A. Ergebnisbericht der Zweiten Externen Formativen Evaluation des Projekts IsPO: Forschungsbericht 03-2021; Veröffentlichungsreihe des Instituts für Medizinsoziologie, Versorgungsforschung und Rehabilitationswissenschaft; IMVR: Cologne, Germany, 2021. [Google Scholar]
- Houwaart, S.; Salm, S.; Krieger, T. Was ist Partizipative Gesundheitsforschung und welche Chancen bietet sie für die organisierte Selbsthilfe? Selbsthilfegruppenjahrbuch 2021, 23, 108–120. [Google Scholar]
- Muhammad, M.; Wallerstein, N.; Sussman, A.L.; Avila, M.; Belone, L.; Duran, B. Reflections on Researcher Identity and Power: The Impact of Positionality on Community Based Participatory Research (CBPR) Processes and Outcomes. Crit. Sociol. 2015, 41, 1045–1063. [Google Scholar] [CrossRef]
- Minkler, M.; Wallerstein, N. Community-Based Participatory Research for Health: From Process to Outcomes, 2nd ed.; Jossey-Bass: Hoboken, NJ, USA, 2008. [Google Scholar]
- Tomisa, G.; Horváth, A.; Dombai, B.; Tamási, L. Characteristics of an optimized patient information material for elderly patients with obstructive pulmonary diseases based on patients’ and experts’ assessment. Multidiscip. Respir. Med. 2017, 12, 6. [Google Scholar] [CrossRef] [Green Version]
- Pfaff, H.; Schulte, H. Der onkologische Patient der Zukunft. Onkologe 2012, 18, 127–133. [Google Scholar] [CrossRef]
- Ladegaard Grønkjær, L.; Berg, K.; Søndergaard, R.; Møller, M. Assessment of Written Patient Information Pertaining to Cirrhosis and Its Complications: A Pilot Study. J. Patient Exp. 2019, 7, 499–506. [Google Scholar] [CrossRef] [Green Version]
- O’Cathain, A.; Croot, L.; Duncan, E.; Rousseau, N.; Sworn, K.; Turner, K.M.; Yardley, L.; Hoddinott, P. Guidance on how to develop complex interventions to improve health and healthcare. BMJ Open 2019, 9, e029954. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Huynh, A.K.; Hamilton, A.B.; Farmer, M.M.; Bean-Mayberry, B.; Stirman, S.W.; Moin, T.; Finley, E.P. A Pragmatic Approach to Guide Implementation Evaluation Research: Strategy Mapping for Complex Interventions. Front. Public Health 2018, 6, 134. [Google Scholar] [CrossRef] [PubMed]
- Härter, M.; Müller, H.; Dirmaier, J.; Donner-Banzhoff, N.; Bieber, C.; Eich, W. Patient participation and shared decision making in Germany—History, agents and current transfer to practice. Z. Evid. Fortbild. Qual. Gesundh. 2011, 105, 263–270. [Google Scholar] [CrossRef] [PubMed]
- Härter, M.; Dirmaier, J.; Scholl, I.; Donner-Banzhoff, N.; Dierks, M.-L.; Eich, W.; Müller, H.; Klemperer, D.; Koch, K.; Bieber, C. The long way of implementing patient-centered care and shared decision making in Germany. Z. Evid. Fortbild. Qual. Gesundh. 2017, 123–124, 46–51. [Google Scholar] [CrossRef]
- McCarron, T.L.; Moffat, K.; Wilkinson, G.; Zelinsky, S.; Boyd, J.M.; White, D.; Hassay, D.; Lorenzetti, D.L.; Marlett, N.J.; Noseworthy, T. Understanding patient engagement in health system decision-making: A co-designed scoping review. Syst. Rev. 2019, 8, 97. [Google Scholar] [CrossRef] [PubMed]
- Friedman, D.B.; Hoffman-Goetz, L. A systematic review of readability and comprehension instruments used for print and web-based cancer information. Health Educ. Behav. 2006, 33, 352–373. [Google Scholar] [CrossRef] [PubMed]
- Cook, T.; Boote, J.; Buckley, N.; Vougioukalou, S.; Wright, M. Accessing participatory research impact and legacy: Developing the evidence base for participatory approaches in health research. Educ. Action Res. 2017, 25, 473–488. [Google Scholar] [CrossRef]
- Hutchison, C.; McCreaddie, M. The process of developing audiovisual patient information: Challenges and opportunities. J. Clin. Nurs. 2007, 16, 2047–2055. [Google Scholar] [CrossRef]
- Cargo, M.; Mercer, S.L. The value and challenges of participatory research: Strengthening its practice. Annu. Rev. Public Health 2008, 29, 325–350. [Google Scholar] [CrossRef]
- Schaefer, I.; Kümpers, S.; Cook, T. “Selten Gehörte” für partizipative Gesundheitsforschung gewinnen: Herausforderungen und Strategien. Bundesgesundheitsblatt Gesundh. Gesundh. 2021, 64, 163–170. [Google Scholar] [CrossRef]
- Dorant, E.; Krieger, T. Contextual Exploration of a New Family Caregiver Support Concept for Geriatric Settings Using a Participatory Health Research Strategy. Int. J. Environ. Res. Public Health 2017, 14, 1467. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Wright, M.T.; Hartung, S.; Bach, M.; Brandes, S.; Gebhardt, B.; Jordan, S.; Schaefer, I.; Wihofszky, P. Impact and Lessons Learned from a National Consortium for Participatory Health Research: PartKommPlus-German Research Consortium for Healthy Communities (2015–2018). Biomed. Res. Int. 2018, 2018, 5184316. [Google Scholar] [CrossRef] [PubMed]
- Krieger, T.; Salm, S.; Mollenhauer, J.; Cecon, N.; Dresen, A.; Houwaart, S.; Schwickerath, K.; Göttel, A.; Arning, A. UPIM-Check—User-friendly Patient Information Material Checklist. 2021. Available online: https://www.imvr.de/forschung/upim-check (accessed on 16 December 2021).
Affiliation and Number of Participants | Role during the PIM Optimization Process | Role in IsPO | Overall Expertise |
---|---|---|---|
House of the Cancer Patient Support Associations of Germany (HKSH-BV) 2 participants | Co-researcher patient perspective
|
|
|
German Cancer Society North-Rhine Westphalia (KG-NRW) 3 participants | Co-researcher expert perspective
|
|
|
Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR), University of Cologne 3 participants | External impulse provider (critical friend approach)
|
|
|
Initial IsPO PIM Elements | Care Network 1 | Care Network 2 | Care Network 3 | Care Network 4 |
---|---|---|---|---|
Leaflet | X | X | X | X |
Patient information folder | X | X | X | X |
Poster | X | |||
Website of the care network (program subpage) | X |
Leaflet Weaknesses Listed by the Four Quality Criteria of the UPIM-Check (Part 1 UPIM-Check) | ||||
Quality Criteria | Criteria that Were Assessed with Red (=Unsatisfactory) within the UPIM-Check | PIM Optimization Team * | Service Providers * | End-Users (Cancer Survivors) * |
Correctness and validity of content | Contextual integration into patient´s situation | 8 | 2 | |
Relevance of the information | 6 | 2 | ||
Recommendation for action | 8 | 2 | ||
Motivation and increase of self-efficiency | 8 | 2 | ||
Readability of content | Aim for the patient identifiable | 6 | 8 | 2 |
Simple, clear language | 8 | 8 | 2 | |
Use of empowering words | 8 | 2 | ||
Structural readability | Appropriate sentence complexity | 8 | 8 | 2 |
Graphically readability | Layout/overall visual appearance | 7 | 2 | |
Appealing “eye catcher” functioning as a “door opener” for recruitment | 8 | 8 | ||
Illustrations | 7 | 2 | ||
| ||||
Perspective | Summary of Key Optimization Recommendations | |||
PIM optimization team |
| |||
isPO service providers (psychotherapist, case manager) |
| |||
End-users (cancer survivors) |
|
PIM Elements (o or n) * | Target Group | Purpose | Moment of Utilization | Information Specification |
---|---|---|---|---|
Poster n | All patients | Display/present the existence and purpose of isPO (“door opener”, motivator) | Broad (waiting room area, general hospital area) | General information concerning isPO Focus on available support and resources |
Leaflet o | Potential isPO-patients | Specific (first introduction to isPO, multiplication factor) | Soon after the first cancer diagnosis | isPO-specific and end-user oriented information (clarification of the benefits) Relevant elements: |
| ||||
Patient information folder o | Suitable isPO patients | Briefing the patient | During the introductory conversation (intake) | Crucial isPO program and study details |
One-pager n | Patients that should be enrolled in the isPO study | Enrolment (to provide a comprehensible overview regarding the study and all ethical aspects and informed consent) | Enrolment | Overview and orientation (e.g., reference to pages in the ethical consideration paper) |
Website n | All patients and other interested persons (e.g., researchers) | Broad (to increase motivation, to raise awareness for psycho-oncology and isPO) | Various (when individually needed for patient information during research) | isPO-specific and needs driven information |
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Krieger, T.; Salm, S.; Dresen, A.; Arning, A.; Schwickerath, K.; Göttel, A.; Houwaart, S.; Pfaff, H.; Cecon, N. Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany. Int. J. Environ. Res. Public Health 2022, 19, 1518. https://doi.org/10.3390/ijerph19031518
Krieger T, Salm S, Dresen A, Arning A, Schwickerath K, Göttel A, Houwaart S, Pfaff H, Cecon N. Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany. International Journal of Environmental Research and Public Health. 2022; 19(3):1518. https://doi.org/10.3390/ijerph19031518
Chicago/Turabian StyleKrieger, Theresia, Sandra Salm, Antje Dresen, Anna Arning, Kathrin Schwickerath, Andrea Göttel, Stefanie Houwaart, Holger Pfaff, and Natalia Cecon. 2022. "Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany" International Journal of Environmental Research and Public Health 19, no. 3: 1518. https://doi.org/10.3390/ijerph19031518