Patient advocacy and support groups in India: focus on lung cancer.
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ABSTRACT:
SUBMITTER: Noronha V
PROVIDER: S-EPMC11328764 | biostudies-literature | 2024 Aug
REPOSITORIES: biostudies-literature
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Patient advocacy and support groups in India: focus on lung cancer.
Noronha Vanita V Mahajan Vandana V Prakash Ravi R Sharma Sanjeev S Prabhash Kumar K
The Lancet regional health. Southeast Asia 20240708
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Project description:Patient-led advocacy organizations in the anaplastic lymphoma kinase (ALK)-positive lung cancer space are becoming increasingly influential. ALK Positive Inc. (hereafter "ALK Positive") is probably the most widely known among these organizations. Evolving from a private Facebook Support Group created in 2015 to provide a forum for ALK-positive lung cancer patients and caregivers to exchange information, empathy and support, ALK Positive transitioned in 2021 into a 501(c)(3) non-profit organization (NPO), with the mission to improve the life expectancy and quality of life for ALK-positive cancer patients worldwide. This review provides a historical perspective on the growth, activities and aspirations of ALK Positive to pursue patient advocacy and enable development of new therapies for individuals with ALK-positive cancers. This growth has been enabled by the collaborative efforts of ALK-positive cancer patients, their care-partners and oncologists, academic researchers, other NPO advocacy organizations, and members of the biotech and pharma communities who develop new therapies for ALK-positive cancers. ALK Positive has grown to provide a variety of patient services, to award competitive support for translational research and clinical trials intended to enable new therapies and improved quality and extent of life for ALK-positive cancer patients, and to collaborate with industry and academia to accelerate the development of improved therapies for ALK-positive cancer patients. ALK Positive continues grappling with a variety of challenges including further improving patient quality of life, enabling the development of new therapies, and extending its already substantial global reach and impact. This review summarizes many of the tangible impacts and aspirations engendered by ALK Positive for ALK-positive cancer patients in the past, present and future tenses-where we have been, where we stand and where we hope to go. The content is based on the historical recollections of the authors, and is accurate as of November 30, 2022, to the best of the authors' knowledge.
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Project description:BackgroundPatient advocacy groups (PAGs) serve a vital role for rare disease patients and families by providing educational resources, support, and a sense of community. Motivated by patient need, PAGs are increasingly at the forefront of policy, research, and drug development for their disease of interest.ObjectivesThe study explored the current landscape of PAGs in order to guide new and existing PAGs on available resources and challenges to research engagement. We aim to inform industry, advocates, and healthcare personnel about PAG achievements and ways they are increasingly involved in research.DesignWe chose PAGs from the Rare Diseases Clinical Research Network (RDCRN) Coalition for Patient Advocacy Groups (CPAG) listserv and the National Organization for Rare Disorders (NORD) 'Find a patient organization'.MethodsWe surveyed eligible PAG leaders about the demographics, goals, and research activities of their organization. For analysis, PAGs were bucketed by size, age, prevalence of disease, and budget. Data were de-identified for cross-tabulation and multinomial logistic regression analysis with R.ResultsResearch engagement was an extremely important goal for most PAGs (81%), though ultra-rare disease and high-budget PAGs were most likely to cite it as the top priority. In total, 79% reported research engagement in some capacity, including registries, translational research, and clinical trials. 'Ultra-rare' PAGs were less likely than 'rare' PAGs to have an ongoing clinical trial.ConclusionWhile PAGs of varying sizes, budgets, and maturity levels reported an interest in research, limited funding and lack of disease awareness continue to create barriers to achieving their goals. While support tools exist to make research more accessible, often their utility depends on the funding, sustainability, maturity of the PAG itself, and the level of investment of collaborators. Despite the availability of current support systems, there are challenges related to both the start-up and sustainability of patient-centric research efforts.
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Project description:The Scientific Registry of Transplant Recipients (SRTR) provides federally mandated program-specific transplant data to the public. Currently, there is little understanding of how different program measures are prioritized by patients in selecting a program for transplantation. This study recruited 479 transplant advocacy group members from mailing lists and social media of the National Kidney Foundation (NKF), transplant families (TF), and Transplant Recipient International Organization (TRIO). Survey participants identified how many different programs would be reasonable to consider and viewed four measures that have recently been displayed on SRTR public search result websites and six measures not recently displayed and indicated importance on a 5-point scale. Four hundred two completed the survey (TF = 26; TRIO = 34; NKF = 342). Seventy-eight percent indicated that considering more than one program would be reasonable. Linear mixed models adjusted for organization, education, and gender. Likert scores for pretransplant (transplant rate) and transplant volume measures were similar and were very or extremely important to over 80% of participants. Posttransplant (survival after transplant) was rated as 0.52 points higher, confidence interval (0.41, 0.64). Results indicate that many patient advocacy group members find a choice between two or more programs reasonable and value multiple measures when assessing programs where they may want to undergo transplantation.
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Project description:BackgroundThe VACCELERATE Pan-European Scientific network aims to strengthen the foundation of vaccine trial research across Europe by following the principles of equity, inclusion, and diversity. The VACCELERATE Volunteer Registry network provides access to vaccine trial sites across the European region and supports a sustainable volunteer platform for identifying potential participants for forthcoming vaccine clinical research.ObjectiveThe aim of this study was to approach members of patient advocacy groups (PAGs) across Europe to assess their willingness to register for the VACCELERATE Volunteer Registry and their perspectives related to participating in vaccine trials.MethodsIn an effort to understand how to increase recruitment for the VACCELERATE Volunteer Registry, a standardized survey was developed in English and translated into 8 different languages (Dutch, English, French, German, Greek, Italian, Spanish, and Swedish) by the respective National Coordinator team. The online, anonymous survey was circulated, from March 2022 to May 2022, to PAGs across 10 European countries (Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Spain, and Sweden) to share with their members. The questionnaire constituted of multiple choice and open-ended questions evaluating information regarding participants' perceptions on participating in vaccine trials and their willingness to become involved in the VACCELERATE Volunteer Registry.ResultsIn total, 520 responses were collected and analyzed. The PAG members reported that the principal criteria influencing their decision to participate in clinical trials overall are (1) the risks involved, (2) the benefits that will be gained from their potential participation, and (3) the quality and quantity of information provided regarding the trial. The survey revealed that, out of the 520 respondents, 133 individuals across all age groups were "positive" toward registering in the VACCELERATE Volunteer Registry, with an additional 47 individuals reporting being "very positive." Respondents from Northern European countries were 1.725 (95% CI 1.206-2.468) times more likely to be willing to participate in the VACCELERATE Volunteer Registry than respondents from Southern European countries.ConclusionsFactors discouraging participants from joining vaccine trial registries or clinical trials primarily include concerns of the safety of novel vaccines and a lack of trust in those involved in vaccine development. These outcomes aid in identifying issues and setbacks in present registries, providing the VACCELERATE network with feedback on how to potentially increase participation and enrollment in trials across Europe. Development of European health communication strategies among diverse public communities, especially via PAGs, is the key for increasing patients' willingness to participate in clinical studies.
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Project description:IntroductionBiomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs.MethodsWe used a mixed-methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open-ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively.ResultsLeaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co-developed, centralized, high-level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision-making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development.ConclusionThis study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy.Patient or public contributionIn this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.
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Project description:Poor survival of lung cancer (LC) patients depends on several factors first of all the delay in the diagnosis, considering that the majority of patients have an advanced-stage disease at the time of diagnosis. In this context, use of screening to increase the percentage of early LC detection can play a crucial role. After the preliminary unsatisfactory experiences with chest X-rays and sputum cytology, low dose computed tomography (LDCT) has become the best method for LC screening. In particular, several randomized LDCT screening trials conducted in the last year showed significant reductions in LC mortality in high-risk subjects. This review focuses on both recent advances in LC screening and some open questions.
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Project description:The purpose of this study was to describe characteristics of cancer patients who were attending Internet cancer support groups and to provide direction for future research. A total of 204 cancer patients were recruited through Internet cancer support groups by posting the study announcement on the Web sites of such groups. The participants were asked to fill out Internet survey questionnaires on sociodemographic characteristics and health/disease status. The data were analyzed using descriptive and inferential statistics, including t tests, analysis of variance, and Chi-square tests. Findings indicate that cancer patients recruited through Internet cancer support groups tended to be middle-aged, well-educated, female, and middle class. The findings also indicate that there were significant differences in some characteristics according to gender and ethnicity. Based on the findings, some implications are suggested for future research using and developing Internet cancer support groups.
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Project description:Many adults with phenylketonuria (PKU) were discharged from clinics before lifelong treatment guidelines and new therapies. As part of the PKU lost to clinical care study, moderated focus groups were conducted to understand why individuals become lost to care and how to maintain patient engagement. Focus groups involved active clinic patients and those lost to PKU care. Discussions revealed desire for enhanced communication, improved support and access, and community connections.
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Project description:BackgroundDepression, the world's leading cause of disability, disproportionately affects women. Women in India, one of the most gender unequal countries worldwide, face systemic gender disadvantage that significantly increases the risk of common mental disorders. This study's objective was to examine the factors influencing women's participation in psychosocial support groups, within an approach where community members work together to collectively strengthen their community's mental health.MethodsThis community-based qualitative study was conducted from May to July 2016, across three peri-urban sites in Dehradun district, Uttarakhand, Northern India. Set within an NGO-run mental health project, data were collected through focus group discussions with individuals involved in psychosocial support groups including women with psychosocial disabilities as well as caregivers (N = 10, representing 59 women), and key informant interviews (N = 8) with community members and mental health professionals. Data were analyzed using a thematic analysis approach.ResultsThe principal barrier to participating in psychosocial support groups was restrictions on women's freedom of movement. Women in the community are not normally permitted to leave home, unless going to market or work, making it difficult for women to leave their home to participate in the groups. The restrictions emanated from the overall community's attitude toward gender relations, the women's own internalized gender expectations, and most significantly, the decision-making power of husbands and mothers-in-law. Other factors including employment and education shaped women's ability to participate in psychosocial support groups; however, the role of these additional factors must be understood in connection to a gender order limiting women's freedom of movement.ConclusionsMental health access and gender inequality are inseparable in the context of Northern India, and women's mental health cannot be addressed without first addressing underlying gender relations. Community-based mental health programs are an effective tool and can be used to strengthen communities collectively; however, attention towards the gender constraints that restrict women's freedom of movement and their ability to access care is required. To our knowledge, this is the first study to clearly document and analyze the connection between access to community mental health services in South Asia and women's freedom of movement.
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