Expectations and needs of patients with a chronic disease toward self-management and eHealth for self-management purposes
Open accessAbstract
BACKGROUND: Self-management is considered as an essential component of chronic care by primary care professionals. eHealth is expected to play an important role in supporting patients in their self-management. For effective implementation of eHealth it is important to investigate patients' expectations and needs regarding self-management and eHealth. The objectives of this study are to investigate expectations and needs of people with a chronic condition regarding self-management and eHealth for self-management purposes, their willingness to use eHealth, and possible differences between patient groups regarding these topics. METHODS: Five focus groups with people with diabetes (n = 14), COPD (n = 9), and a cardiovascular condition (n = 7) were conducted in this qualitative research. Separate focus groups were organized based on patients' chronic condition. The following themes were discussed: 1) the impact of the chronic disease on patients' daily life; 2) their opinions and needs regarding self-management; and 3) their expectations and needs regarding, and willingness to use, eHealth for self-management purposes. A conventional content analysis approach was used for coding. RESULTS: Patient groups seem to differ in expectations and needs regarding self-management and eHealth for self-management purposes. People with diabetes reported most needs and benefits regarding self-management and were most willing to use eHealth, followed by the COPD group. People with a cardiovascular condition mentioned having fewer needs for self-management support, because their disease had little impact on their life. In all patient groups it was reported that the patient, not the care professional, should choose whether or not to use eHealth. Moreover, participants reported that eHealth should not replace, but complement personal care. Many participants reported expecting feelings of anxiety by doing measurement themselves and uncertainty about follow-up of deviant data of measurements. In addition, many participants worried about the implementation of eHealth being a consequence of budget cuts in care. CONCLUSION: This study suggests that aspects of eHealth, and the way in which it should be implemented, should be tailored to the patient. Patients' expected benefits of using eHealth to support self-management and their perceived controllability over their disease seem to play an important role in patients' willingness to use eHealth for self-management purposes.
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Many existing digital interventions for pain self-management lack user-centeredness, with limited involvement of end users and health care providers in the development process.
“Many existing digital interventions for pain self-management also lack user-centeredness, with the limited involvement of end users (ie, people with chronic pain) and health care providers in the development process [21,23,24].”
From Short-Term Findings From Testing EPIO, a Digital Self-Management Program for People Living With Chronic Pain: Randomized Controlled Trial (2023) · cites this paper as [24]
The Background (page unavailable) says eHealth is often not tailored to individual patients and that less effort has gone into investigating patients’ needs before design. It does not establish this for pain self-management interventions or report limited involvement of health care providers in development. It also says user-centred design is frequently used to involve patients during eHealth design and development. (LLM, conf=0.84)
Experimental — accuracy not yet measuredIt is possible that the way the EPIO program has been designed in line with existing recommendations, based on end-user and stakeholder input, plays a role in the perception, use, and ultimate effect of the program.
“It is also possible that the way the EPIO program has been designed in line with existing recommendations [23,24], based on end-user and stakeholder input [30], plays a role in the perception, use, and ultimate effect of the program.”
From Short-Term Findings From Testing EPIO, a Digital Self-Management Program for People Living With Chronic Pain: Randomized Controlled Trial (2023) · cites this paper as [24]
Patients with chronic pain have reported being interested in eHealth interventions in support of self-management.
“Patients with chronic pain have also reported being interested in eHealth interventions in support of self-management [7,21]”
From Digital Self-Management in Support of Patients Living With Chronic Pain: Feasibility Pilot Study (2020) · cites this paper as [7]
Content development for EPIO was based on well-known evidence-based aspects from CBT, with some integrated aspects of ACT, focusing on self-management and coping for patients living with chronic pain in general.
“Content development [26] was based on well-known evidence-based aspects from CBT, with some integrated aspects of ACT, focusing on self-management and coping for patients living with chronic pain in general [7,11,15,30,41,42].”
From Digital Self-Management in Support of Patients Living With Chronic Pain: Feasibility Pilot Study (2020) · cites this paper as [7]
The outcomes of eHealth self-management interventions seem to depend on patients' motivation and adherence.
“The outcomes of eHealth self-management interventions seem to depend on patients’ motivation and adherence [7,25,64,67].”
From Digital Self-Management in Support of Patients Living With Chronic Pain: Feasibility Pilot Study (2020) · cites this paper as [7]
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- Authors
- Huygens, M. W. J., Vermeulen, J., Swinkels, I. C. S., Friele, R. D., van Schayck, O. C. P., & de Witte, L. P.
- Affiliations
- Maastricht University (NL)
- Netherlands Institute for Health Services Research (NL)
- Tilburg University (NL)
- Corresponding author
- Huygens, Martine W. J.
- Venue
- BMC Health Services Research
- Published
- 2016-07-08
- Volume
- 16
- Issue
- 1
- Pages
- 232-232
- ISSN
- 1472-6963 (ISSN-L)
- PMC
- PMC4938915
- OpenAlex
- W2464973289
- Cited by
- 131
- References
- 33
- Citations by year
- 2026: 6 · 2025: 12 · 2024: 11 · 2023: 23 · 2022: 15 · 2021: 14 · 2020: 15 · 2019: 12 · 2018: 15 · 2017: 6 · 2016: 1
- FWCI
- 21.08
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- BMC Health Services Research (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- Research portal (Tilburg University) (publishedVersion, other-oa)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (publishedVersion, cc-by)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Research Publications (Maastricht University) (submittedVersion, cc-by)
- Funders
- ZonMw (10-10400-98-009)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
- Keywords
- self-management, e-health, chronic disease, patient expectations, patient needs, diabetes mellitus, chronic obstructive pulmonary disease, cardiovascular disease, chronic care, patient-centered care, perceived controllability, implementation barriers
- MeSH terms
- Aged, Aged, 80 and over, Attitude, Chronic Disease, Female, Humans, Male, Middle Aged, Self Care, Focus Groups, Telemedicine, Needs Assessment, Qualitative Research
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