Membership of a patients' association and well-being a study into the relationship between membership of a patients' association, fellow-patient contact, information received, and psychosocial well-being of people with a neuromuscular disease

The correlation of CTG repeat length with material and social deprivation in myotonic dystrophy

“…At the community level, designing facilities to encourage meeting and social interaction may help reduce social isolation in patients with DM1 with larger CTG repeat expansion. In this respect, belonging to a lay association was shown to augment the level of well‐being in patients with DM1 (39).…”

“…At the community level, designing facilities to encourage meeting and social interaction may help reduce social isolation in patients with DM1 with larger CTG repeat expansion. In this respect, belonging to a lay association was shown to augment the level of well-being in patients with DM1 (39). From a clinical point of view, the combination of health (multisystemic disease), educational (low educational attainment) economic (low employment and income), and social (poor social support network) characteristics of DM1 warrants the need for a more systematic approach in the management of this complex genetic disorder.…”

Impaired health‐related quality of life in Addison's disease – impact of replacement therapy, comorbidities and socio‐economic factors

“…Previously, van Haastregt et al . showed that patients who benefited from a Patients' Association where the ones who were relatively ill . Furthermore, nothing indicated that receiving information would lead to better well‐being in these patients suffering from neuromuscular disorders .…”

“…Finally, it is possible that members of the Patient's Association, consciously or not, lower their HRQoL when answering our study questionnaire in hope of obtaining better recognition or other benefits. Previously, van Haastregt et al showed that patients who benefited from a Patients' Association where the ones who were relatively ill. 31 Furthermore, nothing indicated that receiving information would lead to better well-being in these patients suffering from neuromuscular disorders. 30 In a cohort of 258 patients with inflammatory bowel diseases, Selinger et al observed that better disease knowledge was associated with a higher anxiety level in the patients.…”

Les associations de malades et la recherche : I. Des self-help groups aux associations de malades.

“…Par la suite, ce mouvement prend une tournure particulière, les mutual-help groups se transformant progressivement en lieux de soutien social et émotionnel pour les malades et leurs familles. L'émergence des maladies chroniques [7] qui exigent que la prise en charge des malades soit organisée sur le long terme, le développement de théories sociales de la maladie comme celle proposée par Parsons [8], la focalisation des spécialistes du mouvement sur la question du bien-être psychologique et social que les participants à différents groupes retirent [9], accentuent fortement cette orientation du mutualhelp vers le « social and emotional support ». Mais c'est sans doute l'institutionnalisation du mouvement qui en constitue le basculement le plus remarquable.…”