A Bio-Psycho-Social Co-created Intervention for Young Adults With Multiple Sclerosis (ESPRIMO): Rationale and Study Protocol for a Feasibility Study.

health-related quality of life multiple sclerosis patient engagement physical activity psychological intervention resilience well-being

Journal

Frontiers in psychology
ISSN: 1664-1078
Titre abrégé: Front Psychol
Pays: Switzerland
ID NLM: 101550902

Informations de publication

Date de publication:
2021
Historique:
received: 25 08 2020
accepted: 18 01 2021
entrez: 12 3 2021
pubmed: 13 3 2021
medline: 13 3 2021
Statut: epublish

Résumé

Multiple sclerosis (MS), the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life (HRQoL). Since MS is generally diagnosed at a young age-a period of great significance for personal, relational, and professional development-adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in order to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity (PA) and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS (YawMS) and to the involvement of patients in the development of such programs. In collaboration with MS patients, this study aims to develop a bio-psycho-social intervention (ESPRIMO) for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects. To tailor the intervention to the specific needs of YawMS, "patient engagement principles" will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre-post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features (e.g., resilience, well-being, mindfulness traits, self-efficacy, perceived social support, psychological symptoms, illness perception, committed action, fatigue, attitudes, subjective norms, perceived behavioral control, motivation, perception of autonomy support for PA, barriers and intentions to PA) will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention.

Sections du résumé

BACKGROUND BACKGROUND
Multiple sclerosis (MS), the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life (HRQoL). Since MS is generally diagnosed at a young age-a period of great significance for personal, relational, and professional development-adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in order to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity (PA) and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS (YawMS) and to the involvement of patients in the development of such programs.
AIMS OBJECTIVE
In collaboration with MS patients, this study aims to develop a bio-psycho-social intervention (ESPRIMO) for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects.
METHODS METHODS
To tailor the intervention to the specific needs of YawMS, "patient engagement principles" will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre-post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features (e.g., resilience, well-being, mindfulness traits, self-efficacy, perceived social support, psychological symptoms, illness perception, committed action, fatigue, attitudes, subjective norms, perceived behavioral control, motivation, perception of autonomy support for PA, barriers and intentions to PA) will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention.

Identifiants

pubmed: 33708157
doi: 10.3389/fpsyg.2021.598726
pmc: PMC7940381
doi:

Types de publication

Journal Article

Langues

eng

Pagination

598726

Informations de copyright

Copyright © 2021 Donisi, Gajofatto, Mazzi, Gobbin, Busch, Ghellere, Klonova, Rudi, Vitali, Schena, Del Piccolo and Rimondini.

Déclaration de conflit d'intérêts

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Références

Disabil Health J. 2019 Jan;12(1):72-78
pubmed: 30093321
Pilot Feasibility Stud. 2016 Oct 21;2:64
pubmed: 27965879
Mult Scler. 2008 Jan;14(1):129-35
pubmed: 17881388
Int J MS Care. 2018 Jan-Feb;20(1):28-34
pubmed: 29507540
J Neurol Sci. 2011 Aug 15;307(1-2):86-91
pubmed: 21621796
Disabil Rehabil. 2016;38(3):218-22
pubmed: 25875049
Continuum (Minneap Minn). 2019 Jun;25(3):753-772
pubmed: 31162315
Child Care Health Dev. 2009 Jul;35(4):437-9
pubmed: 19638020
J Rehabil Med. 2012 Oct;44(10):811-23
pubmed: 22990349
BMC Psychiatry. 2014 Jan 09;14:5
pubmed: 24406031
Brain. 2006 Mar;129(Pt 3):606-16
pubmed: 16415308
J Rehabil Med. 2017 Jun 28;49(6):497-504
pubmed: 28597907
Med Care. 2000 Oct;38(10):1022-8
pubmed: 11021675
Disabil Rehabil. 2020 Apr;42(8):1115-1121
pubmed: 30638081
J Neurol Sci. 2017 Jan 15;372:331-341
pubmed: 28017241
BMC Psychiatry. 2016 Dec 7;16(1):435
pubmed: 27927175
J Adolesc Health. 2006 Sep;39(3):305-17
pubmed: 16919791
Cochrane Database Syst Rev. 2005 Jan 25;(1):CD003980
pubmed: 15674920
Mult Scler. 2014 Jul;20(8):1025-9
pubmed: 24603882
BMC Neurol. 2017 Sep 16;17(1):185
pubmed: 28915856
Can J Commun Ment Health. 2005 Autumn;24(2):9-22
pubmed: 16774132
Mult Scler. 2009 Dec;15(12):1509-17
pubmed: 19995840
Psychol Health. 2015;30(11):1361-85
pubmed: 26181764
J Psychosom Res. 2014 Jun;76(6):465-71
pubmed: 24840141
Bone Marrow Transplant. 2012 Jul;47(7):946-51
pubmed: 22056644
Mult Scler. 2010 Nov;16(11):1393-405
pubmed: 20858692
Neurology. 2019 Jun 11;92(24):e2764-e2773
pubmed: 31092624
Am J Health Educ. 2009;40(3):146-154
pubmed: 29527247
Clin Psychol Rev. 2009 Mar;29(2):141-53
pubmed: 19167801
Int J MS Care. 2016 Jan-Feb;18(1):34-41
pubmed: 26917996
Arch Iran Med. 2020 Apr 01;23(4):283
pubmed: 32271605
Front Psychiatry. 2021 Feb 22;11:588275
pubmed: 33692703
Mult Scler Relat Disord. 2019 May;30:33-37
pubmed: 30735970
Eur J Pain. 2015 May;19(5):677-85
pubmed: 25181605
Mult Scler. 2009 Jun;15(6):752-8
pubmed: 19482864
Eur J Public Health. 2012 Aug;22(4):464-9
pubmed: 21712353
Mult Scler. 2011 Sep;17(9):1041-54
pubmed: 21467189
Mult Scler Relat Disord. 2020 Jun;41:102164
pubmed: 32388452
Lancet Neurol. 2018 Feb;17(2):162-173
pubmed: 29275977
Oncotarget. 2018 May 22;9(39):25402-25413
pubmed: 29875997
BMC Neurol. 2017 Nov 21;17(1):201
pubmed: 29162058
Health Psychol Res. 2013 Sep 23;1(3):e27
pubmed: 26973912
Disabil Rehabil. 2013 Mar;35(5):353-61
pubmed: 23347461
BMC Public Health. 2019 May 30;19(1):664
pubmed: 31146709
Patient Educ Couns. 2013 Mar;90(3):287-90
pubmed: 23395286
Mindfulness (N Y). 2017;8(3):664-676
pubmed: 28515800
J Holist Nurs. 2015 Sep;33(3):247-59
pubmed: 25673578
Front Aging Neurosci. 2018 Dec 21;10:422
pubmed: 30618727
Thromb Res. 2012 Mar;129(3):330-5
pubmed: 22113147
Br J Gen Pract. 2014 Dec;64(629):612-3
pubmed: 25452512
Am Psychol. 2014 Feb-Mar;69(2):178-87
pubmed: 24547803
J Health Psychol. 2014 Jan;19(1):149-58
pubmed: 24058120
Health Expect. 2015 Oct;18(5):995-1008
pubmed: 23614783
Mult Scler. 2001 Jun;7(3):201-6
pubmed: 11475445
Disabil Health J. 2018 Oct;11(4):555-561
pubmed: 29891186
Mult Scler Relat Disord. 2017 Oct;17:154-171
pubmed: 29055451
J Sport Exerc Psychol. 2011 Oct;33(5):734-41
pubmed: 21984644
Rehabil Psychol. 2018 Aug;63(3):338-348
pubmed: 30024203
J Evid Based Complementary Altern Med. 2014 Apr;19(2):104-11
pubmed: 24647090
Assessment. 2006 Mar;13(1):27-45
pubmed: 16443717
Nat Rev Neurol. 2012 Sep;8(9):487-97
pubmed: 22825702
Neurology. 2005 Apr 26;64(8):1422-5
pubmed: 15851734
Acta Psychiatr Scand. 1983 Jun;67(6):361-70
pubmed: 6880820
Eur J Public Health. 2015 Oct;25(5):775-80
pubmed: 25829501
Acta Neurol Scand. 2020 Jul;142(1):58-65
pubmed: 32189325
Disabil Rehabil. 2017 May;39(9):897-903
pubmed: 27206327
BMC Neurol. 2009 Aug 23;9:45
pubmed: 19698171
J Psychosom Res. 2006 Jun;60(6):631-7
pubmed: 16731240
Disabil Rehabil. 2020 Dec;42(24):3437-3449
pubmed: 30999768
PLoS One. 2020 Apr 9;15(4):e0231380
pubmed: 32271833
Qual Life Res. 2012 Aug;21(6):925-44
pubmed: 22012025
Psychol Health Med. 2015;20(6):635-45
pubmed: 25588098
Patient Educ Couns. 2011 Mar;82(3):420-8
pubmed: 21292424
Arch Phys Med Rehabil. 2017 Jun;98(6):1139-1148
pubmed: 27789238
Arch Phys Med Rehabil. 2020 Jul;101(7):1152-1161
pubmed: 32169458
Arch Phys Med Rehabil. 2013 Sep;94(9):1800-1828.e3
pubmed: 23669008
Psychosom Med. 2013 Jul-Aug;75(6):575-80
pubmed: 23788693
Qual Life Res. 2017 Mar;26(3):727-736
pubmed: 27928696
Disabil Rehabil. 2017 Jan;39(1):14-22
pubmed: 26878245
Mult Scler Int. 2014;2014:798285
pubmed: 24963407
J Pain. 2013 Aug;14(8):828-35
pubmed: 23651881
Chronic Illn. 2006 Sep;2(3):195-208
pubmed: 17007696
Disabil Health J. 2015 Oct;8(4):547-56
pubmed: 26087721
J Psychosom Res. 2019 Sep;124:109761
pubmed: 31443806
Int J MS Care. 2015 Jan-Feb;17(1):1-8
pubmed: 25741221
J Pain Res. 2018 Oct 02;11:2145-2159
pubmed: 30323649
Clin J Pain. 2016 Jan;32(1):32-44
pubmed: 25724020
Mult Scler Relat Disord. 2015 May;4(3):202-18
pubmed: 26008937
Exerc Sport Sci Rev. 2014 Apr;42(2):62-9
pubmed: 24508739
J Health Psychol. 2015 Nov;20(11):1434-44
pubmed: 24323335
Support Care Cancer. 1999 May;7(3):121-7
pubmed: 10335929
BMJ Open. 2019 Aug 2;9(8):e030469
pubmed: 31377712
Rehabil Res Pract. 2015;2015:123494
pubmed: 26491567
Rehabil Psychol. 2018 Feb;63(1):29-42
pubmed: 29154558
J Rehabil Med. 2012 Jan;44(1):87-90
pubmed: 22234322
Neurology. 2010 Sep 28;75(13):1141-9
pubmed: 20876468
Mult Scler Relat Disord. 2018 Apr;21:110-116
pubmed: 29550717
Science. 1977 Apr 8;196(4286):129-36
pubmed: 847460
Clin Rehabil. 2017 Oct;31(10):1386-1395
pubmed: 28933614
Front Psychol. 2017 Nov 30;8:2083
pubmed: 29250012
Nurse Res. 2005;13(2):55-70
pubmed: 16416980
Mult Scler Relat Disord. 2016 Jan;5:12-26
pubmed: 26856938
Mult Scler. 2009 Dec;15(12):1518-24
pubmed: 19965520
Bull World Health Organ. 2002;80(12):983-4
pubmed: 12571729
Neurology. 2005 Mar 8;64(5):891-4
pubmed: 15753431
Int J MS Care. 2018 May-Jun;20(3):136-141
pubmed: 29896050
Lancet Neurol. 2010 May;9(5):520-32
pubmed: 20398859
Depress Anxiety. 2003;18(2):76-82
pubmed: 12964174
Neurol Ther. 2018 Dec;7(2):179-187
pubmed: 30414084
Disabil Rehabil. 2017 Jun;39(11):1114-1121
pubmed: 27278670
J Neurol Sci. 2014 Aug 15;343(1-2):3-7
pubmed: 24880538
J Pers Assess. 1990 Winter;55(3-4):610-7
pubmed: 2280326
Sports (Basel). 2020 Aug 23;8(9):
pubmed: 32842476
Psychol Health. 2015;30(5):503-17
pubmed: 25361013
BMC Neurol. 2014 Nov 30;14:222
pubmed: 25433519
Rehabil Psychol. 2020 Aug;65(3):193-198
pubmed: 32406739
Optom Vis Sci. 2015 Oct;92(10):976-85
pubmed: 26267060
J Consult Clin Psychol. 2013 Apr;81(2):251-62
pubmed: 22730954
Front Neurol. 2019 Mar 20;10:261
pubmed: 30949122
Neurorehabil Neural Repair. 2009 Feb;23(2):108-16
pubmed: 18948413
Cochrane Database Syst Rev. 2006 Jan 25;(1):CD004431
pubmed: 16437487
Gen Psychiatr. 2020 Aug 1;33(5):e100264
pubmed: 32818170
Res Q Exerc Sport. 1995 Dec;66(4):292-7
pubmed: 8775584
Pharmacoeconomics. 2001;19(2):187-95
pubmed: 11284382
Int MS J. 2009 Apr;16(1):5-11
pubmed: 19413920
Disabil Rehabil. 2018 Mar;40(6):667-672
pubmed: 28637139
Healthc (Amst). 2014 Dec;2(4):220-224
pubmed: 25984444
Health Qual Life Outcomes. 2005 Mar 18;3:16
pubmed: 15777478
Nat Rev Cardiol. 2018 Apr;15(4):230-240
pubmed: 29022571
Arch Phys Med Rehabil. 2017 Jun;98(6):1158-1164
pubmed: 27993585
Clin Rehabil. 2017 Jun;31(6):809-823
pubmed: 27401492

Auteurs

Valeria Donisi (V)

Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Alberto Gajofatto (A)

Section of Neurology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Maria Angela Mazzi (MA)

Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Francesca Gobbin (F)

Section of Neurology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Isolde Martina Busch (IM)

Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Annamaria Ghellere (A)

Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Alina Klonova (A)

Section of Movement Sciences, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.
Latvian Academy of Sport Education, Riga, Latvia.

Doriana Rudi (D)

Section of Movement Sciences, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Francesca Vitali (F)

Section of Movement Sciences, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Federico Schena (F)

Section of Movement Sciences, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Lidia Del Piccolo (L)

Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Michela Rimondini (M)

Section of Clinical Psychology, Department of Neurosciences, Biomedicine and Movement Sciences, University of Verona, Verona, Italy.

Classifications MeSH