SynthesisHealth and quality of life outcomes2019
A systematic review of dimensions evaluating patient experience in chronic illness.
Synthesis in Health and quality of life outcomes, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
36 citing papers in PubMed, 56 citations in OpenAlex.
- [Patient satisfaction in patients with rheumatoid arthritis : Effects of delegation to rheumatological specialist assistants].Zeitschrift fur Rheumatologie · 2026Trial
- Multi-disciplinary community-based group intervention for fibromyalgia: a pilot randomized controlled trial.Rheumatology international · 2023Trial
- The Impact of Allergic Rhinitis on Australian Adults in an Urban Setting: A Qualitative Exploration.Journal of clinical medicine · 2026Article
- It's you it's about! Exploring existential aspects on quality of life with myasthenia gravis.Medicine, health care, and philosophy · 2026Article
- Development of the long COVID - 6 dimensions quality of life (LC-6D-QoL) scale: a Delphi study.Journal of patient-reported outcomes · 2026Article
- Article
- Mediating Role of Family Resilience and Avoidance Between Financial Toxicity and Quality of Life in Cancer Patients: A Cross-Sectional Study.Patient preference and adherence · 2026Article
- Development and Psychometric Validation of the Patient Experience for Disease Management Scale (PEDMS) in Outpatient Settings in Najran, Saudi Arabia.Healthcare (Basel, Switzerland) · 2025Article
- Time Capsule Medicine: A Mixed-Methods Pilot Study on Immersive Simulation for Chronic Disease Education in Medical Students.Clinics and practice · 2025Article
- Psychological Adjustment Measures for Chronic Illness: A Narrative Review.Iranian journal of psychiatry · 2025Review
- PSO-TARGET: a New Tool to Identify the Therapeutic Expectations of Psoriasis Patients Treated with Biologics.Dermatology and therapy · 2025Article
- Impact of disease cyclicity on quality-of-life impairment-A mixed method explanatory study.JAAD international · 2025Article
- Exploring patient experiences of illness and diagnostic pathways in self-reported Q fever cases.Frontiers in public health · 2025Article
- Lived experiences of persons on tuberculosis treatment in Nairobi County, Kenya: a mixed methods study.BMC public health · 2024Article
- Chronic illness experience in the context of resource-limited settings: a concept analysis.International journal of qualitative studies on health and well-being · 2024Review
- Experience of health care utilization for inpatient and outpatient services among older adults in India.Public health in practice (Oxford, England) · 2024Article
- Leveraging Patients' Creative Ideas for Innovation in Health Care.The Milbank quarterly · 2024Article
- PRESTO 2: An International Survey to Evaluate Patients' Injection Experiences with the Latest Devices/Formulations of Long-Acting Somatostatin Analog Therapies for Neuroendocrine Tumors or Acromegaly.Advances in therapy · 2023Article
- What matters and influence resuscitation preference? Development, field testing, and structural validation of items among older patients in the emergency department.BMC geriatrics · 2022Article
- Chronic Conditions and School Participation of First-Year University Students-HOUSE ULisbon Study.Children (Basel, Switzerland) · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLiving with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient's life. The purpose of this review was to collect and review different kinds of available PRM instruments validated for chronic patients, to produce an inventory of explored concepts in these questionnaires and to identify and classify all dimensions assessing chronic patients experience.
methodsA systematic review of PRM instruments validated for chronic patients was conducted from three databases (Medline, the Cochrane library, and Psycinfo). Articles were selected after a double reading and questionnaires were classified according to their targeted concept. Then, all dimensions of the questionnaires were clustered into different categories.
results107 primary validation studies of PRM questionnaires were selected. Five kinds of instruments were recorded: 1) Questionnaires assessing health related quality of life or quality of life; 2) Instruments focusing on symptoms and functional status; 3) Instruments exploring patients' feelings and attitude about illness; 4) Questionnaires related to patients' experience of treatment or healthcare; 5) Instruments assessing patients attitudes about treatment or healthcare. Twelve categories of dimensions were obtained from these instruments.
conclusionsThis review provided an overview of some of the dimensions used to explore chronic patient experience. A large PRM diversity exists and none of the reviewed and selected questionnaires covered all identified categories of dimensions of patient experience of chronic disease. Furthermore, the definition of explored concepts varies widely among researchers and complex concepts often lack a clear definition in the reviewed articles. Before attempting to measure chronic patient experience, researchers should construct appropriate instruments focusing on well-defined concepts and dimensions encompassing patient's personal experience, attitude and adaptation to illness, treatment or healthcare.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.