Recommendations of older adults on how to use the PROM ‘TOPICS-MDS’ in healthcare conversations: A Delphi study

Autoři: Ruth E. Pel-Littel aff001;  Cynthia S. Hofman aff001;  Liesje Yu aff003;  Silke F. Metzelthin aff004;  Franca H. Leeuwis aff005;  Jeanet W. Blom aff006;  B. M. Buurman aff002;  Mirella M. Minkman aff001
Působiště autorů: Department of Innovation and Research, Vilans, Centre of expertise for long-term care, Utrecht, the Netherlands aff001;  Department of Internal Medicine, Section of Geriatric Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands aff002;  Faculty of Earth and Life Sciences, VU University, Amsterdam, the Netherlands aff003;  Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, Maastricht, the Netherlands aff004;  Department of Geriatric Medicine, Radboud University Medical Center, Nijmegen, the Netherlands aff005;  Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands aff006;  University of Tilburg, TIAS school for Business and Society, Tilburg, the Netherlands aff007
Vyšlo v časopise: PLoS ONE 14(11)
Kategorie: Research Article
doi: 10.1371/journal.pone.0225344


In shared decision making, the exploration of preferred personal health outcomes is important. Patient-reported outcome measures (PROMs) provide input for discussions between patients and healthcare professionals. The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) PROM is a multidimensional questionnaire on the physical and mental health and wellbeing of older adults. This study investigates how the TOPICS-MDS could be used in individual healthcare conversations. We explored views of older adults regarding 1) whether the health domains they want to discuss are included in the TOPICS-MDS and 2) the comprehensibility of the TOPICS-MDS for healthcare conversations with older adults. A three-round Delphi study was conducted. A total of 57 older adults participated in the study, the mean (SD) age was 71.5 (8.5) years, and 78.9% of the participants were female. The participants were divided into four panels based on educational level and cultural background. We used online questionnaires and focus groups. Consensus was pre-defined to be the point when ≥75% of the participants agreed that a domain was important or very important (scored on a 5-point Likert scale). The inter-expert agreement was computed for Round 1 and 3 with Kendall’s W. Round 2 was a focus-group. Qualitative data were analyzed by content analysis. Older adults considered 'functional limitations', 'emotional wellbeing', 'social functioning' and 'quality of life' to be important domains of the TOPICS-MDS to discuss in healthcare conversations. The participants added 'coping with stress', 'dealing with health conditions and the effects on life' as extra domains for healthcare conversations. Challenges regarding the comprehensibility of the TOPICS-MDS included difficult words and lengthy or sensitive questions. Questions that included multiple topics were difficult to understand. The TOPICS-MDS covers the domains of life that older adults value as important to discuss with healthcare professionals, and two additional domains were identified. For older adults with a low level of education or a culturally diverse background, the TOPICS-MDS needs to be adjusted for comprehensibility.

Klíčová slova:

Allied health care professionals – Behavioral and social aspects of health – Elderly – Emotions – Mental health and psychiatry – Netherlands – Quality of life – Questionnaires


1. Gijsen R, Hoeymans N, Schellevis FG, Ruwaard D, Satariano WA, et al. (2001) Causes and consequences of comorbidity: a review. J Clin Epidemiol 54: 661–674. doi: 10.1016/s0895-4356(00)00363-2 11438406

2. Gu J, Chao J, Chen W, Xu H, Zhang R, et al. (2017) Multimorbidity and health-related quality of life among the community-dwelling elderly: A longitudinal study. Arch Gerontol Geriatr 74: 133–140. doi: 10.1016/j.archger.2017.10.019 29096228

3. Durand MA, Carpenter L, Dolan H, Bravo P, Mann M, et al. (2014) Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PLoS One 9: e94670. doi: 10.1371/journal.pone.0094670 24736389

4. Shay LA, Lafata JE (2015) Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making 35: 114–131. doi: 10.1177/0272989X14551638 25351843

5. Jansen J, Naganathan V, Carter SM, McLachlan AJ, Nickel B, et al. (2016) Too much medicine in older people? Deprescribing through shared decision making. Bmj 353: i2893. doi: 10.1136/bmj.i2893 27260319

6. van Weert JC, van Munster BC, Sanders R, Spijker R, Hooft L, et al. (2016) Decision aids to help older people make health decisions: a systematic review and meta-analysis. BMC Med Inform Decis Mak 16: 45. doi: 10.1186/s12911-016-0281-8 27098100

7. Forum NQ (2012) Multiple Chronic Conditions (MCC) Measurement Framework Washington DC: National Quality Forum.

8. Vermunt NP, Harmsen M, Elwyn G, Westert GP, Burgers JS, et al. (2018) A three-goal model for patients with multimorbidity: A qualitative approach. Health Expect 21: 528–538. doi: 10.1111/hex.12647 29193557

9. Pel-Littel RE, van Rijn M, Vermunt PW, van Weert JCM, Minkman MM, et al. (2018) Do multiple chronic conditions influence personal views on the ageing process? A qualitative analysis Journal of Aging Research & Clinical Practice 7: 20–26.

10. van de Pol MH, Fluit CR, Lagro J, Slaats YH, Olde Rikkert MG, et al. (2016) Expert and patient consensus on a dynamic model for shared decision-making in frail older patients. Patient Educ Couns 99: 1069–1077. doi: 10.1016/j.pec.2015.12.014 26763871

11. Joseph-Williams N, Edwards A, Elwyn G (2014) Power imbalance prevents shared decision making. Bmj 348: g3178. doi: 10.1136/bmj.g3178 25134115

12. Godolphin W (2009) Shared decision-making. Healthc Q 12 Spec No Patient: e186–190.

13. Fried TR, McGraw S, Agostini JV, Tinetti ME (2008) Views of older persons with multiple morbidities on competing outcomes and clinical decision-making. J Am Geriatr Soc 56: 1839–1844. doi: 10.1111/j.1532-5415.2008.01923.x 18771453

14. Fried TR, Tinetti ME, Iannone L (2011) Primary care clinicians' experiences with treatment decision making for older persons with multiple conditions. Arch Intern Med 171: 75–80. doi: 10.1001/archinternmed.2010.318 20837819

15. Belcher VN, Fried TR, Agostini JV, Tinetti ME (2006) Views of older adults on patient participation in medication-related decision making. J Gen Intern Med 21: 298–303. doi: 10.1111/j.1525-1497.2006.00329.x 16686804

16. Greenhalgh J, Gooding K, Gibbons E, Dalkin S, Wright J, et al. (2018) How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. J Patient Rep Outcomes 2: 42. doi: 10.1186/s41687-018-0061-6 30294712

17. Hems M, Harkes M, Moret-Hartman M, Melis RJF, Schoon Y (2017) [Patient reported outcome measures in geriatric care: first experiences]. Tijdschr Gerontol Geriatr 48: 287–296. doi: 10.1007/s12439-017-0237-1 29119368

18. Lutomski JE, Baars MA, Schalk BW, Boter H, Buurman BM, et al. (2013) The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiative. PLoS One 8: e81673. doi: 10.1371/journal.pone.0081673 24324716

19. van Zwieten M, Willems D (2004) Waardering van kwalitatief onderzoek. Huisarts en wetenschap 47: 38–43.

20. Kunst AE (2010) Een overzicht van sociaal-economische verschillen in gezondheid in Europa. Amsterdam: Amsterdam University Press. 134 p.

21. Yousuf MI (2007) Using experts’ opinions through Delphi technique. Practical assessment, research & evaluation 12: 1–8.

22. Hasson F, Keeney S, McKenna H (2000) Research guidelines for the Delphi survey technique. J Adv Nurs 32: 1008–1015. 11095242

23. Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C (2011) Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS One 6: e20476. doi: 10.1371/journal.pone.0020476 21694759

24. Cheung CK, Zebrack B (2017) What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Support Care Cancer 25: 119–126. doi: 10.1007/s00520-016-3396-7 27580714

25. van Stralen MM, Lechner L, Mudde AN, de Vries H, Bolman C (2010) Determinants of awareness, initiation and maintenance of physical activity among the over-fifties: a Delphi study. Health Educ Res 25: 233–247. doi: 10.1093/her/cyn045 18927443

26. Walker A, Selfe J (1996) The Delphi method: a useful tool for the allied health researcher. International Journal of Therapy and Rehabilitation 3: 677–681.

27. Organization WH (1995) Field Trial WHOQOL-100 February 1995 THE 100 QUESTIONS WITH RESPONSE SCALES Geneva: WHO.

28. Organization WH (1996) WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment: field trial version. World Health Organization.

29. Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, et al. (2011) How should we define health? Bmj 343: d4163. doi: 10.1136/bmj.d4163 21791490

30. Singler K, Gordon AL, Robertson G, Roller RE (2016) The development of a geriatric postgraduate education assessment instrument using a modified Delphi procedure. Age Ageing 45: 718–722. doi: 10.1093/ageing/afw086 27189727

31. Lavan AH, Gallagher P, Parsons C, O'Mahony D (2017) STOPPFrail (Screening Tool of Older Persons Prescriptions in Frail adults with limited life expectancy): consensus validation. Age Ageing 46: 600–607. doi: 10.1093/ageing/afx005 28119312

32. Gignac MA, Davis AM, Hawker G, Wright JG, Mahomed N, et al. (2006) "What do you expect? You're just getting older": A comparison of perceived osteoarthritis-related and aging-related health experiences in middle- and older-age adults. Arthritis Rheum 55: 905–912. doi: 10.1002/art.22338 17139636

33. Grime J, Richardson JC, Ong BN (2010) Perceptions of joint pain and feeling well in older people who reported being healthy: a qualitative study. Br J Gen Pract 60: 597–603. doi: 10.3399/bjgp10X515106 20822692

34. Calnan M, Wainwright D, O'Neill C, Winterbottom A, Watkins C (2006) Making sense of aches and pains. Fam Pract 23: 91–105. doi: 10.1093/fampra/cmi077 16107493

35. Fried TR, Bradley EH, Towle VR, Allore H (2002) Understanding the treatment preferences of seriously ill patients. N Engl J Med 346: 1061–1066. doi: 10.1056/NEJMsa012528 11932474

36. Ridd M, Shaw A, Lewis G, Salisbury C (2009) The patient-doctor relationship: a synthesis of the qualitative literature on patients' perspectives. Br J Gen Pract 59: e116–133. doi: 10.3399/bjgp09X420248 19341547

37. van Ravesteijn H, Lucassen P, van der Akker M (2008) GPs' experiences with loneliness. Aust Fam Physician 37: 973–976. 19037477

38. Due TD, Sandholdt H, Waldorff FB (2017) Social relations and loneliness among older patients consulting their general practitioner. Dan Med J 64.

39. Kharicha K, Iliffe S, Manthorpe J, Chew-Graham CA, Cattan M, et al. (2017) What do older people experiencing loneliness think about primary care or community based interventions to reduce loneliness? A qualitative study in England. Health Soc Care Community 25: 1733–1742. doi: 10.1111/hsc.12438 28231615

40. Steinert A, Haesner M, E. S-T (2016) STRESS IN OLDER ADULTS–CAUSES, CONSEQUENCES AND COPING STRATEGIES. The Gerontologist 56: 725.

41. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J (2002) Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 48: 177–187. doi: 10.1016/s0738-3991(02)00032-0 12401421

42. Jerant AF, von Friederichs-Fitzwater MM, Moore M (2005) Patients' perceived barriers to active self-management of chronic conditions. Patient Educ Couns 57: 300–307. doi: 10.1016/j.pec.2004.08.004 15893212

43. Jordan JE, Briggs AM, Brand CA, Osborne RH (2008) Enhancing patient engagement in chronic disease self-management support initiatives in Australia: the need for an integrated approach. Med J Aust 189: S9–s13. 19143585

44. Kralik D, Price K, Telford K (2010) The meaning of self‐care for people with chronic illness. 197–204 p.

45. Smith BW, Dalen J, Wiggins K, Tooley E, Christopher P, et al. (2008) The brief resilience scale: assessing the ability to bounce back. Int J Behav Med 15: 194–200. doi: 10.1080/10705500802222972 18696313

46. Verhagen I, Ros WJ, Steunenberg B, Laan W, de Wit NJ (2014) Differences in health care utilisation between elderly from ethnic minorities and ethnic Dutch elderly. Int J Equity Health 13: 125. doi: 10.1186/s12939-014-0125-z 25527126

47. Wachelder JJH, van Drunen I, Stassen PM, Brouns SHA, Lambooij SLE, et al. (2017) Association of socioeconomic status with outcomes in older adult community-dwelling patients after visiting the emergency department: a retrospective cohort study. BMJ Open 7: e019318. doi: 10.1136/bmjopen-2017-019318 29282273

48. Ebrahim S (1996) Ethnic elders. Bmj 313: 610–613. doi: 10.1136/bmj.313.7057.610 8806256

49. De Klerk MMY (2004) Zorg en wonen voor kwetsbare ouderen. The Hague: Sociaal en cultureel planbureau Longitudinal Aging Study Amsterdam.

50. Van Wieringen J (2014) Wie zorgt voor de oudere migranten? De rol van mantelzorgers, sleutelfiguren, professionals, gemeenten en ouderen zelf. Utrecht: Pharos Expertisecentrum Gezondheidsverschillen.

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2019 Číslo 11