Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review

Palominos, Penélope Esther; Gasparin, Andrese Aline; Andrade, Nicole Pamplona Bueno de; Xavier, Ricardo Machado; Chakr, Rafael Mendonça da Silva; Igansi, Fernanda; Gossec, Laure

doi:10.1186/s42358-018-0001-4

Penélope Esther Palominos ^** Correspondence: penelopepalominos@gmail.com

Universidade Federal do Rio Grande do Sul (UFRGS), Programa de Pós Graduação em Ciências Médicas (PPGCM), Rua Ramiro Barcelos 2400, segundo andar, Porto Alegre 90035-903, Brazil.

Department of Rheumatology, Hospital de Clinicas de Porto Alegre, Rua Ramiro Barcelos 2350, sexto andar, Porto Alegre 90035-903, Brazil.

Andrese Aline Gasparin

Universidade Federal do Rio Grande do Sul (UFRGS), Programa de Pós Graduação em Ciências Médicas (PPGCM), Rua Ramiro Barcelos 2400, segundo andar, Porto Alegre 90035-903, Brazil.

Nicole Pamplona Bueno de Andrade

Universidade Federal do Rio Grande do Sul (UFRGS), Programa de Pós Graduação em Ciências Médicas (PPGCM), Rua Ramiro Barcelos 2400, segundo andar, Porto Alegre 90035-903, Brazil.

Ricardo Machado Xavier

Universidade Federal do Rio Grande do Sul (UFRGS), Programa de Pós Graduação em Ciências Médicas (PPGCM), Rua Ramiro Barcelos 2400, segundo andar, Porto Alegre 90035-903, Brazil.

Department of Rheumatology, Hospital de Clinicas de Porto Alegre, Rua Ramiro Barcelos 2350, sexto andar, Porto Alegre 90035-903, Brazil.

Rafael Mendonça da Silva Chakr

Universidade Federal do Rio Grande do Sul (UFRGS), Programa de Pós Graduação em Ciências Médicas (PPGCM), Rua Ramiro Barcelos 2400, segundo andar, Porto Alegre 90035-903, Brazil.

Department of Rheumatology, Hospital de Clinicas de Porto Alegre, Rua Ramiro Barcelos 2350, sexto andar, Porto Alegre 90035-903, Brazil.

Fernanda Igansi

Universidade Federal do Rio Grande do Sul (UFRGS), Programa de Pós Graduação em Ciências Médicas (PPGCM), Rua Ramiro Barcelos 2400, segundo andar, Porto Alegre 90035-903, Brazil.

Laure Gossec

Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique, GRC-UPMC 08 (EEMOIS); Department of Rheumatology, Pitié Salpêtrière Hospital, AP-HP, 47-83 Boulevard de l'Hôpital, 75013 Paris, France.

* Correspondence: penelopepalominos@gmail.com

Authors' contributions

All authors meet the authorship criteria, giving substantial contribution to the conception of the work, data acquisition and analysis, drafting or reviewing the work for intellectual content and giving final approval of the version to be published. The authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Competing interests

The authors declare that they have no competing interests.

	All articles (N =84)	Studies employing only qualitative methodology N =18	Studies employing only quantitative methodology N = 58	Studies with mixed (qualitative and quantitative) methodology N = 8
Total number of patients	24,336	334	23,539	463
Female sex N ^a a Numbers calculated on available data	18,032	201	17,577	254
Age of participants (mean ± SD)^a a Numbers calculated on available data	54.9 ± 5.0	56.4 ± 7.2	54.5 ± 4.8	56.3 ± 2.1
Disease duration in years (mean ± SD) ^a a Numbers calculated on available data	10.7 ±6.0	13.9 ± 7.2	10.1 ± 5.9	11.2 ± 4.2
Method used for assessment of fears and/or beliefs N (%) of articles using the method ^b b The final result can be greater than 100% since some articles employed more than one method to assess fear and/or beliefs
Individual interviews	17 (20.2)	13 (72.2)	NA	4 (50.0)
Focus groups	5 (6.0)	4 (22.2)	NA	1 (12.5)
Individual interviews and focus groups	1 (1.2)	1 (5.6)	NA	0 (0.0)
Questionnaire	63 (75.0)	NA	58 (100.0)	5(62.5)

Fears	Articles N (% of the 32 articles reporting fears) ^a a Some articles reported more than one category of fears	Total number of patients	N (%) of studies recruiting participants in Europe in each category/ Number of patients recruited in Europe	N (%) of studies recruiting participants in North America / Number of patients recruited in North America	N (%) of studies recruiting participants outside Europe and North America /Number of patients recruited outside Europe and North America
Fears related to pharmacological therapy	16 (50.0)	1085	13 (81.3) / 867 (760 in UK, 101 in Netherlands, 6 in Sweden)	2 (12.5) /78 (60 in Canada, 18 USA)	1(6.2)/140 (140 in Egypt)
Fear of consequences of disease in the future and disability	9 (28.1)	1049	6 (66.7) / 707 (460 in UK, 199 in Greece, 48 in Sweden)	1 (11.1)/ 30 (30 in USA)	2 (22.2) /312 (101 in United Arab Emirates, 211 in Australia)
Fears related to pregnancy and parenting role	3 (9.4)	211	3 (100.0) / 211 (102 in UK, 25 in France, 84 in Netherlands)	-	-
Fear of falling	3 (9.4)	5172	1(33.3)/48 (48 in Sweden)	1 (33.3) / 128 (128 in USA)	1 (33.3) / 4996 (4996 in Japan)
Fear of exercise related injury/ fear of exercise increasing RA symptoms	3 (9.4)	4289	3 (100.0) / 4289 (4283 in Sweden, 6 in UK)	-	-
Fear to disturb other people	2 (6.3)	38	1 (50.0) / 8 (8 in UK)	1 (50.0) / 30 (30 in USA)	-
Fear of infections	2 (6.3)	54	2(100.0) / 54 (48 in Sweden, 6 in UK)	-	-
Fear of negative evaluation from other people due to appearance	1 (3.1)	89	1 (100.0)/89 (89 in UK)	-	-

Fears	Author and year of publication
Fear of treatment failure	Sanderson 2009 [⁶⁰60. Sanderson T, Calnan M, Morris M, Richards P, Hewlett S. The impact of patient-perceived restricted access to anti-TNF therapy for rheumatoid arthritis: a qualitative study. Musculoskeletal Care. 2009;7(3):194–209.]
Fear of being taken of a drug	Sanderson 2009 [⁶⁰60. Sanderson T, Calnan M, Morris M, Richards P, Hewlett S. The impact of patient-perceived restricted access to anti-TNF therapy for rheumatoid arthritis: a qualitative study. Musculoskeletal Care. 2009;7(3):194–209.]
Fear of side effects of treatment (mainly long- term side effects)	Goodacre 2004 [⁴4. Goodacre LJ, Goodacre JA. Factors influencing the beliefs of patients with rheumatoid arthritis regarding disease-modifying medication. Rheumatology. 2004;43(5):583–6.] Popa-Lisseanu 2005 [⁶¹61. Popa-Lisseanu MGG, Greisinger A, Richardson M, O'Malley KJ, Janssen NM, Marcus DM, et al. Determinants of treatment adherence in ethnically diverse, economically disadvantaged patients with rheumatic disease. J Rheumatol. 2005;32(5):913–9.] Wong 2007 [⁵5. Wong M, Mulherin D. The influence of medication beliefs and other psychosocial factors on early discontinuation of disease-modifying antirheumatic drugs. Musculoskeletal Care. 2007;5(3):148–59.] Sanderson 2009 [⁶⁰60. Sanderson T, Calnan M, Morris M, Richards P, Hewlett S. The impact of patient-perceived restricted access to anti-TNF therapy for rheumatoid arthritis: a qualitative study. Musculoskeletal Care. 2009;7(3):194–209.] Fitzcharles 2009 [⁶²62. Fitzcharles MA, DaCosta D, Ware MA, Shir Y. Patient barriers to pain management may contribute to poor pain control in rheumatoid arthritis. J Pain. 2009;10(3):300–5.] Kumar 2011 [⁴³43. Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. “It's like taking poison to kill poison but I have to get better”: a qualitative study of beliefs about medicines in rheumatoid arthritis and systemic lupus erythematosus patients of south Asian origin. Lupus. 2011;20(8):837–44.] Van den Bent 2011 [⁶³63. Van Den Bemt BJF, Den Broeder AA, Van Den Hoogen FHJ, Benraad B, Hekster YA, Van Riel PLCM, et al. Making the rheumatologist aware of patients' non-adherence does not improve medication adherence in patients with rheumatoid arthritis. Scand J Rheumatol. 2011;40(3):192–6.] Hayden 2015 [¹⁴14. Hayden C, Neame R, Tarrant C. Patients' adherence-related beliefs about methotrexate: a qualitative study of the role of written patient information. BMJ Open. 2015;5(5):e006918.] Gadallah 2015 [⁴²42. Gadallah MA, Boulos DNK, Gebrel A, Dewedar S, Morisky DE. Assessment of rheumatoid arthritis patients' adherence to treatment. Am J Med Sci. 2015; 349(2):151-6.] Pasma 2015 [¹⁵15. Pasma A, Van't Spijker A, Luime JJ, Walter MJM, Busschbach JJV, Hazes JMW. Facilitators and barriers to adherence in the initiation phase of diseasemodifying antirheumatic drug (DMARD) use in patients with arthritis who recently started their first DMARD treatment. J Rheumatol. 2015;42(3):379–85.] Nota 2015 [⁶⁴64. Nota I, Drossaert CHC, Taal E, Van De Laar MAFJ. Patients' considerations in the decision-making process of initiating disease-modifying antirheumatic drugs. Arthritis Care Res. 2015;67(7):956–64.]
Fear of ‘too many pills/too many drugs”, fear of over-prescription	Popa-Lisseanu 2005 [⁶¹61. Popa-Lisseanu MGG, Greisinger A, Richardson M, O'Malley KJ, Janssen NM, Marcus DM, et al. Determinants of treatment adherence in ethnically diverse, economically disadvantaged patients with rheumatic disease. J Rheumatol. 2005;32(5):913–9.] Wong 2007 [⁵5. Wong M, Mulherin D. The influence of medication beliefs and other psychosocial factors on early discontinuation of disease-modifying antirheumatic drugs. Musculoskeletal Care. 2007;5(3):148–59.] Fitzcharles 2009 [⁶²62. Fitzcharles MA, DaCosta D, Ware MA, Shir Y. Patient barriers to pain management may contribute to poor pain control in rheumatoid arthritis. J Pain. 2009;10(3):300–5.]
Fear of drug interaction	Fitzcharles 2009 [⁶²62. Fitzcharles MA, DaCosta D, Ware MA, Shir Y. Patient barriers to pain management may contribute to poor pain control in rheumatoid arthritis. J Pain. 2009;10(3):300–5.]
Fear of addiction	Goodacre 2004 [⁴4. Goodacre LJ, Goodacre JA. Factors influencing the beliefs of patients with rheumatoid arthritis regarding disease-modifying medication. Rheumatology. 2004;43(5):583–6.] Wong 2007 [⁵5. Wong M, Mulherin D. The influence of medication beliefs and other psychosocial factors on early discontinuation of disease-modifying antirheumatic drugs. Musculoskeletal Care. 2007;5(3):148–59.] Sanderson 2009 [⁶⁰60. Sanderson T, Calnan M, Morris M, Richards P, Hewlett S. The impact of patient-perceived restricted access to anti-TNF therapy for rheumatoid arthritis: a qualitative study. Musculoskeletal Care. 2009;7(3):194–209.] Fitzcharles 2009 [⁶²62. Fitzcharles MA, DaCosta D, Ware MA, Shir Y. Patient barriers to pain management may contribute to poor pain control in rheumatoid arthritis. J Pain. 2009;10(3):300–5.] Kumar 2011 [⁴³43. Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. “It's like taking poison to kill poison but I have to get better”: a qualitative study of beliefs about medicines in rheumatoid arthritis and systemic lupus erythematosus patients of south Asian origin. Lupus. 2011;20(8):837–44.] Van den Bent 2011 [⁶³63. Van Den Bemt BJF, Den Broeder AA, Van Den Hoogen FHJ, Benraad B, Hekster YA, Van Riel PLCM, et al. Making the rheumatologist aware of patients' non-adherence does not improve medication adherence in patients with rheumatoid arthritis. Scand J Rheumatol. 2011;40(3):192–6.] Nota 2015 [⁶⁴64. Nota I, Drossaert CHC, Taal E, Van De Laar MAFJ. Patients' considerations in the decision-making process of initiating disease-modifying antirheumatic drugs. Arthritis Care Res. 2015;67(7):956–64.]
Fear of masking disease	Fitzcharles 2009 [⁶²62. Fitzcharles MA, DaCosta D, Ware MA, Shir Y. Patient barriers to pain management may contribute to poor pain control in rheumatoid arthritis. J Pain. 2009;10(3):300–5.]
Fear of drugs causing reduced life expectancy	Goodacre 2004 [⁴4. Goodacre LJ, Goodacre JA. Factors influencing the beliefs of patients with rheumatoid arthritis regarding disease-modifying medication. Rheumatology. 2004;43(5):583–6.]
Fear of being disappointed with a new treatment	Nyman 1999 [⁴⁶46. Nyman CS, Lutzen K. Caring needs of patients with rheumatoid arthritis. Nurs Sci Q. 1999;12(2):164–9.]
Fear of too many changes in therapy	Kumar 2011 [⁴³43. Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. “It's like taking poison to kill poison but I have to get better”: a qualitative study of beliefs about medicines in rheumatoid arthritis and systemic lupus erythematosus patients of south Asian origin. Lupus. 2011;20(8):837–44.]

Beliefs and their consequences	Articles N (% of the 74 articles reporting beliefs)^a a Some articles reported more than one category of beliefs	Total number of patients	Studies recruiting participants in Europe N (%) / Number of patients recruited in Europe	Studies recruiting participants in North America N (%) /Number of patients recruited in North America	Studies recruiting participants outside Europe and North America N (%) / Number of patients recruited outside Europe and North America
Beliefs about the RA affecting impact of disease	33 (44.6)	9146
Emotional impact	14 (18.9)	6404	6 (42.9) / 901	7 (50.0) / 945	1 (7.1)/4558
Function	6 (8.1)	715	4 (66.7)/ 370	2 (33.3) / 345	-
Quality of life	5 (6.8)	1034	4 (80.0) / 623	1 (20.0) / 411	-
Fatigue	2 (2.7)	186	1 (50.0) / 64	1 (50.0) / 122	-
Pain	2 (2.7)	299	-	2 (100.0) / 299	-
Well being	2 (2.7)	123	-	2 (100.0) / 123	-
Disease activity	1 (1.4)	322	1 (100.0) / 322	-	-
Sexual life	1 (1.4)	63	1 (100.0) / 63	-	-
Beliefs about pharmacological and non-pharmacological therapy affecting adherence	13 (17.6)	2464	10 (77.0) / 1999	2 (15.4) / 325	1 (7.6) / 140
Beliefs about cause of disease affecting coping strategies and adherence	9 (12.1)	961	8 (88.9) / 750	-	1 (11.1) / 211
Beliefs affecting decision on therapy	1 (1.4)	142	-	1 (100.0) / 142	-
Beliefs affecting detection, tolerance and reporting of side effects	1 (1.4)	29	1 (100.0) / 29	-	-

[1] * Correspondence: penelopepalominos@gmail.com

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Fears and beliefs of people living with rheumatoid arthritis: a systematic literature review

Abstract

Objective:

Methods:

Results:

Conclusion: