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Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review

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Abstract

Background

Support groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of participating in rare disease support groups and (2) barriers and facilitators of establishing and maintaining these groups.

Methods

CINAHL and PubMed were searched from January 2000 to August 2015, with no language restrictions. Publications that described the benefits or perceived benefits of participating in rare disease support groups or the barriers and facilitators of establishing and maintaining them were eligible for inclusion. Two investigators independently evaluated titles/abstracts and full-text publications for eligibility, and extracted data from each included publication.

Results

Ten publications were included in the scoping review. There was no trial evidence on support group benefits. All ten publications reported on the perceived benefits of participating in rare disease support groups. Three reported on barriers and facilitators of establishing and maintaining them. Overall, seven different perceived benefits of participating in rare disease support groups were identified: (1) meeting and befriending other people with the same rare disease and similar experiences; (2) learning about the disease and related treatments; (3) giving and receiving emotional support; (4) having a place to speak openly about the disease and one’s feelings; (5) learning coping skills; (6) feeling empowered and hopeful; and (7) advocating to improve healthcare for other rare disease patients. Several facilitators (e.g., meeting via teleconference) and barriers (e.g., getting patients and/or family members to lead the group) of establishing and maintaining these groups were identified.

Conclusions

Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.

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Authors and Affiliations

  1. McGill University, Montréal, QC, Canada

    Vanessa C. Delisle, Stephanie T. Gumuchian, Danielle B. Rice, Alexander W. Levis, Annett Körner & Brett D. Thombs

  2. Lady Davis Institute, Jewish General Hospital, 4333 Cote St-Catherine Road, Montréal, QC, H3T 1E4, Canada

    Vanessa C. Delisle, Stephanie T. Gumuchian, Danielle B. Rice, Alexander W. Levis, Annett Körner & Brett D. Thombs

  3. Concordia University, Montréal, QC, Canada

    Lorie A. Kloda

Authors
  1. Vanessa C. Delisle
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Corresponding author

Correspondence to Brett D. Thombs.

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Funding

Ms. Delisle is supported by a Canadian Institutes for Health Research (CIHR) Doctoral Award. Ms. Gumuchian is supported by a CIHR Master’s Award. Ms. Rice is supported by a Fonds de Recherche Santé Québec Master’s Award. Dr. Thombs receives support from an Investigator Award form the Arthritis Society. No funding body had any input into any aspect of this scoping review.

Conflict of interest

Ms. Delisle, Ms. Gumuchian, Ms. Rice, Mr. Levis, Dr. Kloda, Dr. Körner, and Dr. Thombs declare that they have no conflicts of interest.

Authors’ contributions

Ms. Delisle made substantial contributions to the conception and design, acquisition, analysis, and interpretation of data, and was involved in drafting the final manuscript. Ms. Gumuchian made substantial contributions to the acquisition, analysis, and interpretation of data, and was involved in drafting the final manuscript. Ms. Rice made substantial contributions to the acquisition, analysis, and interpretation of data, and was involved in drafting the final manuscript. Mr. Levis made substantial contributions to the acquisition of data, and was involved in drafting the final manuscript. Dr. Kloda made substantial contributions to the acquisition of data, and was involved in drafting the final manuscript. Dr. Körner made substantial contributions to the analysis and interpretation of data, and was involved in drafting the final manuscript. Dr. Thombs made substantial contributions to the conception and design, acquisition, analysis, and interpretation of data, and was involved in drafting the final manuscript. All authors read and approved the final manuscript. Dr. Thombs is the overall guarantor.

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This article does not contain any studies with human participants or animals performed by any of the authors.

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Delisle, V.C., Gumuchian, S.T., Rice, D.B. et al. Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review. Patient 10, 283–293 (2017). https://doi.org/10.1007/s40271-016-0213-9

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