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Open Access 01-12-2023 | Disorders of Intellectual Development | Study protocol

Case management and care expertise as a prevention approach for adults with intellectual disabilities (FaPP-MgB): study protocol for a randomized-controlled trial

Authors: Stephan Nadolny, Dirk Bruland, Marie Grunwald, Annika Gröndahl, Jessica Grammatico, Miriam Tariba Richter, Christian Grebe, Änne-Dörte Latteck

Published in: Trials | Issue 1/2023

Abstract

Background

Adults with intellectual disabilities have a higher prevalence of unhealthy eating habits, stress, low levels of mobility, and comparable drug consumption as the general population. Consequently, they suffer from several chronic diseases earlier and more often, but there are fewer prevention and health promotion services including this population. The goal of this study is to determine if an advanced practice nursing approach in the community with home visits is an effective way to improve the health status of adults with intellectual disabilities.

Methods

We will conduct a randomized-controlled trial with waiting list design in Hamburg, Germany. Inclusion criteria are diagnosis ICD F70-F79 and exclusion criteria are care level > 3 according to the German Social Code XI or being at the end-of-life. Participants will be block randomized. The intervention consists of advanced practice nurses performing case management, social space analysis, prevention planning, and counseling through four outreach home visits on nutrition, mobility, addiction, and stress. Comparison is usual care. The primary outcome is health status (WHODAS) after 12 months. Secondary outcomes are health-related quality of life (EQ-5D) and resilience (RS-11) after 6 and 12 months. The calculated sample size is 256 with an estimated dropout of 30%. Raters and analysts will be blinded. Analysis will be performed using ANCOVAs.

Discussion

By providing case management and utilizing their nursing expertise, advanced practice nurses will provide valuable input and guidance on prevention and health promotion for people with intellectual disabilities. They will close the gap between health and social care, which is prominent in Germany, through cooperation between the existing care sectors.

The findings will be disseminated in peer-reviewed journals and presented at national and international conferences.

Trial registration

German Clinical Trials Register, DRKS00028771, registered 4 July 2022, Universal Trial Number: U1111-1277–0595.

We acknowledge that there are cultural differences in “labeling” the target population. We chose to call the population people with intellectual disabilities for this study because this comes closest to the term used in the German Social Code. We are also aware that people from the target population in Germany rather want to be called “people with learning difficulties” However, due to the adherence to the German Social Code and our funding, we use people with intellectual disabilities throughout this publication, while using “people with learning difficulties” in the day-to-day interactions.

Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil. 2011;32:419–36. https://doi.org/10.1016/j.ridd.2010.12.018.CrossRefPubMed

McKenzie K, Milton M, Smith G, Ouellette-Kuntz H. Systematic review of the prevalence and incidence of intellectual disabilities: current trends and issues. Curr Dev Disord Rep. 2016;3:104–15. https://doi.org/10.1007/s40474-016-0085-7.CrossRef

Liao P, Vajdic C, Trollor J, Reppermund S. Prevalence and incidence of physical health conditions in people with intellectual disability - a systematic review. PLoS One. 2021;16:e0256294. https://doi.org/10.1371/journal.pone.0256294.

van den Bemd M, Cuypers M, Bischoff EWMA, Heutmekers M, Schalk B, Leusink GL. Exploring chronic disease prevalence in people with intellectual disabilities in primary care settings: a scoping review. J Appl Res Intellect Disabil. 2022;35:382–98. https://doi.org/10.1111/jar.12957.CrossRefPubMed

Iwanaga K, Wu JR, Chan F, Rumrill P, Wehman P, Brooke VA, et al. A systematic review of systematic reviews of secondary health conditions, health promotion, and employment of people with intellectual disabilities. Aust J Rehabil Couns. 2021;27:13–40. https://doi.org/10.1017/jrc.2021.2.CrossRef

Lynch L, McCarron M, McCallion P, Burke E. Sedentary behaviour levels in adults with an intellectual disability: a systematic review and meta-analysis. HRB Open Res. 2021;4:69. https://doi.org/10.12688/hrbopenres.13326.3.CrossRefPubMed

Dairo YM, Collett J, Dawes H, Oskrochi GR. Physical activity levels in adults with intellectual disabilities: a systematic review. Prev Med Rep. 2016;4:209–19. https://doi.org/10.1016/j.pmedr.2016.06.008.CrossRefPubMedPubMedCentral

Hsieh K, Rimmer JH, Heller T. Obesity and associated factors in adults with intellectual disability. J Intellect Disabil Res. 2014;58:851–63. https://doi.org/10.1111/jir.12100.CrossRefPubMed

Scott HM, Havercamp SM. Mental health for people with intellectual disability: the impact of stress and social support. Am J Intellect Dev Disabil. 2014;119:552–64. https://doi.org/10.1352/1944-7558-119.6.552.CrossRefPubMed

10.

Kerr S, Lawrence M, Middleton AR, Fitzsimmons L, Darbyshire C. Tobacco and alcohol use in people with mild/moderate intellectual disabilities: giving voice to their health promotion needs. J Appl Res Intellect Disabil. 2017;30:612–26. https://doi.org/10.1111/jar.12255.CrossRefPubMed

11.

Didden R, VanDerNagel J, Delforterie M, van Duijvenbode N. Substance use disorders in people with intellectual disability. Curr Opin Psychiatry. 2020;33:124–9. https://doi.org/10.1097/YCO.0000000000000569.CrossRefPubMed

12.

Hirvikoski T, Boman M, Tideman M, Lichtenstein P, Butwicka A. Association of intellectual disability with all-cause and cause-specific mortality in Sweden. JAMA Netw Open. 2021;4:e2113014. https://doi.org/10.1001/jamanetworkopen.2021.13014.

13.

Hosking FJ, Carey IM, Shah SM, Harris T, DeWilde S, Beighton C, Cook DG. Mortality among adults with intellectual disability in England: comparisons with the general population. Am J Public Health. 2016;106:1483–90. https://doi.org/10.2105/AJPH.2016.303240.CrossRefPubMedPubMedCentral

14.

Cooper S-A, Allan L, Greenlaw N, McSkimming P, Jasilek A, Henderson A, et al. Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage. BMJ Open. 2020;10:e036465. https://doi.org/10.1136/bmjopen-2019-036465.

15.

Doyle A, O’Sullivan M, Craig S, McConkey R. People with intellectual disability in Ireland are still dying young. J Appl Res Intellect Disabil. 2021;34:1057–65. https://doi.org/10.1111/jar.12853.

16.

Hanlon P, MacDonald S, Wood K, Allan L, Cooper S-A. Long-term condition management in adults with intellectual disability in primary care: a systematic review. BJGP Open. 2018;2:bjgpopen18X101445. https://doi.org/10.3399/bjgpopen18X101445.

17.

Doherty AJ, Atherton H, Boland P, Hastings R, Hives L, Hood K, et al. Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review. BJGP Open. 2020;4:bjgpopen20X101030. https://doi.org/10.3399/bjgpopen20X101030.

18.

Baccolini V, Rosso A, Di Paolo C, Isonne C, Salerno C, Migliara G, et al. What is the prevalence of low health literacy in European Union Member States? A systematic review and meta-analysis. J Gen Intern Med. 2021;36:753–61. https://doi.org/10.1007/s11606-020-06407-8.CrossRefPubMedPubMedCentral

19.

The Economist Intelligence Unit. Health literacy around the world: policy approaches to wellbeing through knowledge and empowerment. 2021. https://impact.economist.com/perspectives/sites/default/files/lon_-_es_-_health_literacy_paper_v8_0.pdf. Accessed 25 Jun 2022.

20.

Geukes C, Bruland D, Latteck Ä-D. Health literacy in people with intellectual disabilities: a mixed-method literature review. Kontakt. 2018;20:e416–23. https://doi.org/10.1016/j.kontakt.2018.10.008.CrossRef

21.

Pavlovic M, Zunic-Pavlovic V, Glumbic N. A comparison of individual qualities of resiliency in adolescents with mild intellectual disability and typically developing adolescents. Nastava i vaspitanje. 2017;66:289–304. https://doi.org/10.5937/nasvas1702289P.CrossRef

22.

Scheffers F, Moonen X, van Vugt E. External sources promoting resilience in adults with intellectual disabilities: a systematic literature review. J Intellect Disabil. 2022;26:227–43. https://doi.org/10.1177/1744629520961942.CrossRefPubMed

23.

Vlot-van Anrooij K, Koks-Leensen MCJ, van der Cruijsen A, Jansen H, van der Velden K, Leusink G, et al. How can care settings for people with intellectual disabilities embed health promotion? J Appl Res Intellect Disabil. 2020;33:1489–99. https://doi.org/10.1111/jar.12776.CrossRefPubMedPubMedCentral

24.

Roll AE. Health promotion for people with intellectual disabilities - a concept analysis. Scand J Caring Sci. 2018;32:422–9. https://doi.org/10.1111/scs.12448.CrossRefPubMed

25.

Dieterich S, Grebe C, Bräutigam C, Hoßfeld R, Latteck Ä-D, Helmbold A, et al. Graduates of the model study courses in the health professions in North Rhine-Westphalia: employment characteristics and competencies in professional practice. Gesundheitswesen. 2020;82:920–30. https://doi.org/10.1055/a-1241-3983.CrossRefPubMedPubMedCentral

26.

Bartholomeyczik S. Development of Nursing Science in Germany – a difficult emergence. P&G. 2017;22:101–17.

27.

Bergjan M, Tannen A, Mai T, Feuchtinger J, Luboeinski J, Bauer J, et al. Integrating academic nurses in German university hospitals: a follow-up survey. Z Evid Fortbild Qual Gesundhwes. 2021;163:47–56. https://doi.org/10.1016/j.zefq.2021.04.001.

28.

Prommersberger M. Advanced nursing practice: the German experience. Eur J Emerg Med. 2020;27:11–2. https://doi.org/10.1097/MEJ.0000000000000666.CrossRefPubMed

29.

Manz U. Manz to School Health Care in Germany. Professionalization processes between primary health care, health promotion and structural development. P&G. 2021;26:323–36. https://doi.org/10.3262/P&G2104323.

30.

Doody O, Hennessy T, Bright A-M. The role and key activities of Clinical Nurse Specialists and Advanced Nurse Practitioners in supporting healthcare provision for people with intellectual disability: An integrative review. Int J Nurs Stud. 2022;129:104207. https://doi.org/10.1016/j.ijnurstu.2022.104207.

31.

King AJL, Johnson R, Cramer H, Purdy S, Huntley AL. Community case management and unplanned hospital admissions in patients with heart failure: a systematic review and qualitative evidence synthesis. J Adv Nurs. 2018;74:1463–73. https://doi.org/10.1111/jan.13559.CrossRefPubMed

32.

Yu Z, Gallant AJ, Cassidy CE, Boulos L, Macdonald M, Stevens S. Case management models and continuing care: a literature review across nations, settings, approaches, and assessments. Home Health Care Manag Pract. 2021;33:96–107. https://doi.org/10.1177/1084822320954394.CrossRef

33.

Takeda A, Martin N, Taylor RS, Taylor SJ. Disease management interventions for heart failure. Cochrane Database Syst Rev. 2019;1:CD002752. https://doi.org/10.1002/14651858.CD002752.pub4.

34.

Joo JY, Liu MF. Case management effectiveness in reducing hospital use: a systematic review. Int Nurs Rev. 2017;64:296–308. https://doi.org/10.1111/inr.12335.CrossRefPubMed

35.

Dieterich M, Irving CB, Bergman H, Khokhar MA, Park B, Marshall M. Intensive case management for severe mental illness. Cochrane Database Syst Rev. 2017;1:CD007906. https://doi.org/10.1002/14651858.CD007906.pub3.

36.

Smith SM, Wallace E, O'Dowd T, Fortin M. Interventions for improving outcomes in patients with multimorbidity in primary care and community settings. Cochrane Database Syst Rev. 2021;1:CD006560. https://doi.org/10.1002/14651858.CD006560.pub4.

37.

Köpke S, McCleery J. Systematic reviews of case management: too complex to manage? Cochrane Database Syst Rev. 2015;1:ED000096. https://doi.org/10.1002/14651858.ED000096.

38.

Poupard N, Tang CY, Shields N. Community-based case management does not reduce hospital admissions for older people: a systematic review and meta-analysis. Aust Health Rev. 2020;44:83–92. https://doi.org/10.1071/AH18135.CrossRefPubMed

39.

Joo JY, Liu MF. Experiences of case management with chronic illnesses: a qualitative systematic review. Int Nurs Rev. 2018;65:102–13. https://doi.org/10.1111/inr.12429.CrossRefPubMed

40.

Teper MH, Vedel I, Yang XQ, Margo-Dermer E, Hudon C. Understanding barriers to and facilitators of case management in primary care: a systematic review and thematic synthesis. The Annals of Family Medicine. 2020;18:355–63. https://doi.org/10.1370/afm.2555.

41.

Joo JY, Huber DL. Barriers in case managers’ roles: a qualitative systematic review. West J Nurs Res. 2018;40:1522–42. https://doi.org/10.1177/0193945917728689.CrossRefPubMed

42.

Robertson J, Emerson E. Review of evaluative research on case management for people with intellectual disabilities. In: Bigby C, Fyffe C, Ozanne E, editors. Planning and support for people with intellectual disabilities: Issues for case managers and other professionals. Sydney, London, Philadelphia: UNSW Press; Jessica Kingsley Publishers; 2007. p. 280–99.

43.

Banks S. Chronic illness and people with intellectual disability: prevalence, prevention and management. 2016. https://www.nds.org.au/images/LearnNDevelop/Chronic-Illness-and-People-with-Intellectual-Disability.PDF. Accessed 1 Oct 2022.

44.

Dean S, Marshall J, Whelan E, Watson J, Zorbas C, Cameron AJ. A systematic review of health promotion programs to improve nutrition for people with intellectual disability. Curr Nutr Rep. 2021;10:255–66. https://doi.org/10.1007/s13668-021-00382-0.CrossRefPubMed

45.

Singh NN, Hwang Y-S. Mindfulness-based programs and practices for people with intellectual and developmental disability. Curr Opin Psychiatry. 2020;33:86–91. https://doi.org/10.1097/YCO.0000000000000570.CrossRefPubMed

46.

Uschner D, Schindler D, Hilgers R-D, Heussen N. randomizeR : an R Package for the assessment and implementation of randomization in clinical trials. J Stat Soft. 2018. https://doi.org/10.18637/jss.v085.i08.

47.

Eldridge S, Kerry SM. A practical guide to cluster randomised trials in health services research. Chichester, West Sussex: Wiley; 2012.CrossRef

48.

Lukersmith S, Millington M, Salvador-Carulla L. What is case management? A scoping and mapping review. Int J Integr Care. 2016;16:2. https://doi.org/10.5334/ijic.2477.CrossRefPubMedPubMedCentral

49.

Bartholomeyczik S. Prevention and health promotion as concepts of care. P&G. 2006;11:210–23.

50.

Wihofszky P, Layh S, Hofrichter P, Jahnke M, Göldner, J. Integrated Municipal Strategies. Readiness for establishing and expanding integrated municipal strategies of health promotion (RIMS) 2020. http://partkommplus.de/fileadmin/files/Dokumente/KEG/210203_Arbeitsheft_webinteraktEN.pdf. Accessed 1 Oct 2022.

51.

Lindmeier C. Biografiearbeit mit geistig behinderten Menschen: Ein Praxisbuch für Einzel- und Gruppenarbeit. 4th ed. Weinheim: Juventa-Verl; 2013.

52.

Hirdes JP, Morris JN. InterRAI intellectual disability (ID) assessment form and user’s manual. 9th ed. Ann Arbor, Mich.: InterRAI; 2013.

53.

Krohwinkel M. Rehabilitierende Prozesspflege am Beispiel von Apoplexiekranken: Fördernde Prozesspflege als System. 3rd ed. Bern: Huber; 2008.

54.

Üstün TB, Kostanjsek N, Chatterji S, Rehm J, editors. Measuring health and disebility: manual for WHO disability schedule (WHODAS 2.0). Geneva: World Health Organization (WHO); 2010.

55.

Schumacher J, Leppert K, Gunzelmann T, Strauß B, Brähler E. The Resilience Scale - a questionnaire to assess resilience as a personality characteristic. Z Klin Psychol Psychother. 2005;53:16–39.

56.

Ludwig K, Graf von der Schulenburg J-M, Greiner W. German Value Set for the EQ-5D-5L. Pharmacoeconomics. 2018;36:663–74. https://doi.org/10.1007/s40273-018-0615-8.

57.

Faul F, Erdfelder E, Buchner A, Lang A-G. Statistical power analyses using G*Power 3.1: Tests for correlation and regression analyses. Behav Res Methods. 2009;41:1149–60. https://doi.org/10.3758/BRM.41.4.1149.

Title: Case management and care expertise as a prevention approach for adults with intellectual disabilities (FaPP-MgB): study protocol for a randomized-controlled trial
Authors: Stephan Nadolny
Dirk Bruland
Marie Grunwald
Annika Gröndahl
Jessica Grammatico
Miriam Tariba Richter
Christian Grebe
Änne-Dörte Latteck
Publication date: 01-12-2023
Publisher: BioMed Central
Keywords: Disorders of Intellectual Development
Intellectual Disability
Care
Expert Opinion
Expert Opinion
Published in: Trials / Issue 1/2023
Electronic ISSN: 1745-6215
DOI: https://doi.org/10.1186/s13063-023-07155-w

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Case management and care expertise as a prevention approach for adults with intellectual disabilities (FaPP-MgB): study protocol for a randomized-controlled trial

Abstract

Background

Methods

Discussion

Trial registration

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Discussion

Trial registration

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