Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study

Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study

BackgroundRare diseases in Europe are defined as diseases with a prevalence of less than 5 per 10,000 people. Despite their individual rarity, the total number of rare diseases is considerable. Rare diseases are often chronic and complex, affecting physical, mental, and neuro...

Full description

Bibliographic Details
Main Authors:	Tina Černe, Eva Turk, Spela Mirosevic, Danica Rotar Pavlič
Format:	Article
Language:	English
Published:	JMIR Publications 2024-04-01
Series:	JMIR Research Protocols
Online Access:	https://www.researchprotocols.org/2024/1/e53362

Similar Items

A Study of Information Needs and Information Behaviors of the Primary Caregivers of Children and Adolescents with Rare Diseases
by: Hui-Yu Fan, et al.
Published: (2016-12-01)

Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate
by: Julie McMullan, et al.
Published: (2020-11-01)

Frailty assessment scales for the elderly and their application in primary care: A systematic literature review
by: Dolenc Eva, et al.
Published: (2019-03-01)

Erasmus exchange in the field of family medicine in Slovenia
by: Danica Rotar-Pavlič
Published: (2012-05-01)

Early identification of patients in need of palliative care in slovenian general practice
by: Klok Lisette, et al.
Published: (2018-04-01)

Needs of people with rare diseases that can be supported by electronic resources: a scoping review
by: Jeffrey Braithwaite, et al.
Published: (2022-09-01)

Innovation by patients with rare diseases and chronic needs
by: Oliveira, Pedro, et al.
Published: (2015)

Trials in rare diseases: the need to think differently
by: Billingham Lucinda, et al.
Published: (2011-12-01)

PERIPHERAL ARTERIAL OCCLUSIVE DISEASE AND VARICOSE VEINS IN DIABETIC PATIENTS
by: Blaž Mlačak, et al.
Published: (2004-12-01)

Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases
by: Rosanne M. Smits, et al.
Published: (2022-04-01)

Health and socio-educational needs of the families and children with rare metabolic diseases: Qualitative study in a tertiary hospital
by: Eva María Tejada-Ortigosa, et al.
Published: (2019-01-01)

Informal care in the context of long-term health care for the elderly in Slovenia: A qualitative study
by: Pavlič Danica Rotar, et al.
Published: (2021-06-01)

Integrating reinforcement learning and serious games to support people with rare genetic diseases and neurodevelopmental disorders: outcomes on parents and caregivers
by: Fabrizio Stasolla, et al.
Published: (2024-04-01)

Family caregivers of rare disease: A survey on health‐related quality of life in family caregivers for Gaucher disease patients in China
by: Jiao Xu, et al.
Published: (2021-09-01)

Rare diseases in Tanzania: a National Call for Action to address policy and urgent needs of individuals with rare diseases
by: Frida Kaywanga, et al.
Published: (2022-09-01)

Medical students’ perception of distance-based education during the COVID-19 pandemic in Slovenia: A qualitative study
by: Danica Rotar-Pavlic, et al.
Published: (2022-01-01)

Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
by: Ariadne Guimarães Dias, et al.
Published: (2023-03-01)

Family caregiver quality of life and the care provided to older people living with dementia: qualitative analyses of caregiver interviews
by: Afeez Abiola Hazzan, et al.
Published: (2022-01-01)

Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire
by: Magdalena Harrington, et al.
Published: (2019-07-01)

Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease
by: Pelentsov LJ, et al.
Published: (2016-09-01)

Analysis of rare Parkinson’s disease variants in millions of people
by: Vanessa Pitz, et al.
Published: (2024-01-01)

Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative–Qualitative Study
by: Loredana Benedetto, et al.
Published: (2023-11-01)

Patients’ perception of differences in general practitioners’ attitudes toward immigrants compared to the general population: Qualicopc Slovenia
by: Jakič Maja, et al.
Published: (2016-09-01)

Information provision to caregivers of children with rare dermatological disorders: an international multimethod qualitative study
by: Gerard Leavey, et al.
Published: (2023-07-01)

Treating Rare Diseases in Africa: The Drugs Exist but the Need Is Unmet
by: Lucio Luzzatto, et al.
Published: (2022-01-01)

Education and information needs for physicians about rare diseases in Spain
by: Enrique Ramalle-Gómara, et al.
Published: (2020-01-01)

The need for closure in caregivers of people with psychosis.
by: Onwumere, J, et al.
Published: (2010)

Caregivers for people with end-stage lung disease: Characteristics and unmet needs in the whole population
by: David C Currow, et al.
Published: (2008-08-01)

The experiences and perceptions of people with chronic and rare diseases during political-economic sanctions in Iran: a qualitative study
by: Mohammad Mehdi Kiani, et al.
Published: (2024-03-01)

Xanthogranulomatous prostatitis: Rare presentation of rare disease
by: Rohan S Valsangkar, et al.
Published: (2012-01-01)

Estimating the number of diseases – the concept of rare, ultra-rare, and hyper-rare
by: C. I. Edvard Smith, et al.
Published: (2022-08-01)

Living with a rare disease - experiences and needs in pediatric patients and their parents
by: Stefanie Witt, et al.
Published: (2023-08-01)

Rare disease patients’ needs: an up-to-date analysis and future directions
by: Maria Kamusheva, et al.
Published: (2021-10-01)

EPIRARE survey on activities and needs of rare disease registries in the European Union
by: Taruscio Domenica, et al.
Published: (2012-11-01)

The patient’s view on rare disease trial design – a qualitative study
by: C. M. W. Gaasterland, et al.
Published: (2019-02-01)

Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study
by: Christopher Poppe, et al.
Published: (2022-02-01)

Exploring the usefulness of indicators for referring people with dementia and their informal caregivers to activating interventions: a qualitative analysis of needs assessments
by: Netta Van’t Leven, et al.
Published: (2019-08-01)

The experience of caregivers providing therapeutic patient education for people living with bipolar disorder: a qualitative study
by: Marion Chirio-Espitalier, et al.
Published: (2023-03-01)

Biomarkers in Rare Diseases
by: Bridget E. Bax
Published: (2021-01-01)

Policy for rare diseases
Published: (2023-02-01)