Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study

Doyle, Maya

doi:10.1007/s40271-014-0085-9

Cited by 46 publications

(28 citation statements)

References 34 publications

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“…The results from the study are supported by similar reports in other rare and/or chronic diseases [10,16]. A recent case study described the positive impact of connection on diseaserelated anxiety and psychological distress experienced by a patient with FCS after attending a single FCS patient/caregiver support group meeting [12].…”

Section: Discussionsupporting

confidence: 84%

Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome

Salvatore

Gilstrap

Williams

et al. 2018

Expert Opinion on Orphan Drugs

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Background: Familial chylomicronemia syndrome (FCS) is a disease caused by impaired lipoprotein lipase function and characterized by chylomicronemia, reduced quality of life (QoL) and risk of pancreatitis. The aim of the current study is to assess if QoL can be improved by patients being connected to other patients. Methods: Respondents (N = 50) categorized into 3 groups (actively connected, passively connected and non-connected) self-reported their current or comparative assessments of QoL before and after connection with FCS-focused support organizations using a customized retrospective web-based survey. Results: Connected respondents showed significantly improved perceptions of overall health, disease severity, motivation to take care of health and emotional well-being (p ≤ 0.05). Any level of connection produced noticeable benefits, but active connection in the form of regular interaction with other patients reported the greatest improvements. Additionally, respondents reported higher levels of satisfaction with their primary treating physician after being connected. The majority of patients (62%) reported joining support groups following referrals from their physicians. Conclusions: Similar to other disease states, connecting with other patients with FCS had a positive impact on aspects of quality of life. Physicians may play a central role in referring their patients with FCS to support groups.

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Section: Discussionsupporting

confidence: 84%

Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome

Salvatore

Gilstrap

Williams

et al. 2018

Expert Opinion on Orphan Drugs

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“…Doyle [4] explores the issues faced by children with cystinosis growing into adulthood, and their parents. Interviews and focus groups were used to understand the impact of the rare disease community and found that participants were comfortable in the disease community, which allowed them to share experiences, and to gain confidence to go public about their illness and mentor others.…”

Section: Patient Communitiesmentioning

confidence: 99%

The Imperative for Patient-Centred Research to Develop Better Quality Services in Rare Diseases

Facey¹,

Hansen

2015

Patient

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“…Furthermore, peer support groups are common resources for this age demographic within and outside of the rare disease community. In a 2015 study regarding cystinosis support groups for emerging adults (n = 49), participants reported valuing the connection and support they received from those who understand their lived experience (Doyle, 2015). Additionally, in a 2018 study involving a literature review regarding 15 studies on the impact of peer support groups on adolescents struggling with mental health, support groups were shown to be positive in uences in the management of short-term and long-term problems (Roach, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…When breaking our population into cohorts of adolescents (ages 12-18) and young adults (ages [19][20][21][22][23][24][25], it is evident that certain themes are most relevant to certain age groups versus others (see Supplemental Tables II, IV, VI, and VIII). Statistically signi cant results were found in Questions 1, 2 and 4 with respect to differing priorities.…”

Section: Correlations Of Findings Between Age and Motor Function Statusmentioning

confidence: 99%

“I have SMA, SMA doesn’t have me”- A Qualitative Snapshot Into the Challenges, Successes, and Quality of Life of Sma Adolescents and Young Adults

Mazzella

Curry

Belter

et al. 2020

Preprint

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Background: With the approval of two treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a clinical meaningfulness survey to capture information, quantitatively and qualitatively, on the quality-of-life of this population. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the open-ended section in the survey along with the video contest findings are reported here.Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the open-ended section of the survey, while six individuals, mostly type II, participated in the SMA awareness video contest. In both settings, individuals detailed a wide variety of challenges, including but not limited to forming or maintaining close relationships, feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, in the survey, an overwhelming number of respondents (39%) requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to capture their insights in order to affect change.

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Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study

Cited by 46 publications

References 34 publications

Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome

Evaluating the impact of peer support and connection on the quality of life of patients with familial chylomicronemia syndrome

The Imperative for Patient-Centred Research to Develop Better Quality Services in Rare Diseases

“I have SMA, SMA doesn’t have me”- A Qualitative Snapshot Into the Challenges, Successes, and Quality of Life of Sma Adolescents and Young Adults

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