Knowledge gaps in patients with COPD and their proxies

Nakken, Nienke; Janssen, Daisy J.A.; Bogaart, Esther H. A. van den; Muris, Jean; Vercoulen, J.H.M.M.; Custers, F.; Bootsma, Gerben; Gronenschild, Michiel H. M.; Wouters, Emiel F.M.; Spruit, Martijn A.

doi:10.1186/s12890-017-0481-8

Cited by 30 publications

(27 citation statements)

References 33 publications

(38 reference statements)

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“…Empowerment is an important part of communication [9] and the participants in our study asked for more support and information from primary care healthcare professionals. Lack of knowledge in people with COPD has been reported previously [15,37,[39][40][41][42], and Cicutto and Brooks [29] suggested that lack of knowledge is a barrier to people with COPD getting involved in their own healthcare. This might explain why few people with COPD ask questions or offer opinions during consultations and are therefore perceived of as less willing to be involved in decision-making [1,15].…”

Section: Discussionmentioning

confidence: 89%

Enhancing Confidence and Coping with Stigma in an Ambiguous Interaction with Primary Care: A Qualitative Study of People with COPD

Lundell

Wadell

Wiklund

et al. 2020

COPD: Journal of Chronic Obstructive Pulmonary Disease

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Meaningful and high-quality interactions between people with COPD and healthcare professionals are essential to accomplish effective and efficient self-management. This study's aim was to explore how people with COPD experience COPD-related interactions with healthcare professionals in primary care, and how these interactions influence their self-management and how they cope with their disease. Interviews were performed with eight women and five men with COPD, and grounded theory guided data collection and analysis. The analysis resulted in a theoretical model and the core category (Re)acting in an ambiguous interaction, representing a dynamic process in which healthcare priorities, healthcare professionals' attitudes and participants' personal emotions were important for the participants' experiences of interactions, and how they managed and coped with their disease. Mutually respectful and regular relationships with healthcare professionals, along with a personal positive view of life, empowered and facilitated participants to accept and manage their disease. In contrast, experiences of being deprioritized and not taken seriously, along with experiences of fear and stigma, disempowered and inhibited participants in making healthcare contacts or forced them to compensate for experienced insufficiencies in primary care. In order to facilitate meaningful and high-quality interactions and enhance patient-provider partnerships in primary care, there is a need to improve the status of COPD, as well as to increase competence in COPD management among healthcare professionals and support the empowerment of people with COPD. Findings from this study could guide the implementation of improved self-management support in primary care for COPD and other chronic conditions.

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Section: Discussionmentioning

confidence: 89%

Enhancing Confidence and Coping with Stigma in an Ambiguous Interaction with Primary Care: A Qualitative Study of People with COPD

Lundell

Wadell

Wiklund

et al. 2020

COPD: Journal of Chronic Obstructive Pulmonary Disease

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“…An important finding is that people with COPD only turned to primary care when faced with strictly medical issues and not issues related to self-management. One explanation for this, supported by previous research, is insufficient knowledge about self-management [ 43 , 44 ], including insufficient knowledge about what services and support are available from primary care. Another explanation might be the experience of guilt and shame associated with a self-inflicted disease that was described by the people with COPD in this study and also reported in other studies [ 45 - 48 ].…”

Section: Discussionmentioning

confidence: 99%

Usefulness and Relevance of an eHealth Tool in Supporting the Self-Management of Chronic Obstructive Pulmonary Disease: Explorative Qualitative Study of a Cocreative Process

Tistad¹,

Lundell²,

Wiklund³

et al. 2018

JMIR Hum Factors

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BackgroundNew strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives.ObjectiveThe objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers.MethodsData were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis.ResultsThe overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge.ConclusionsThe cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

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“…Therefore, you can assume that people with more knowledge about their disease recognize when they need to seek help earlier than those who lack such knowledge. These findings again emphasize the importance of education for patients with COPD [57,58].…”

Section: Predictors Of Ecopd-related Hospital Admissionmentioning

confidence: 53%

Physical, Psychological, and Social Factors Associated with Exacerbation-Related Hospitalization in Patients with COPD

Crutsen

Keene

Janssen

et al. 2020

JCM

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Background and objective: Exacerbation(s) of chronic obstructive pulmonary disease (eCOPD) entail important events describing an acute deterioration of respiratory symptoms. Changes in medication and/or hospitalization are needed to gain control over the event. However, an exacerbation leading to hospitalization is associated with a worse prognosis for the patient. The objective of this study is to explore factors that could predict the probability of an eCOPD-related hospitalization. Methods: Data from 128 patients with COPD included in a prospective, longitudinal study were used. At baseline, physical, emotional, and social status of the patients were assessed. Moreover, hospital admission during a one year follow-up was captured. Different models were made based on univariate analysis, literature, and practice. These models were combined to come to one final overall prediction model. Results: During follow-up, 31 (24.2%) participants were admitted for eCOPD. The overall model contained six significant variables: currently smoking (OR = 3.93), forced vital capacity (FVC; OR = 0.97), timed-up-and-go time (TUG-time) (OR = 14.16), knowledge (COPD knowledge questionnaire, percentage correctly answered questions (CIROPD %correct )) (<60% (OR = 1.00); 60%-75%: (OR = 0.30); >75%: (OR = 1.94), eCOPD history (OR = 9.98), and care dependency scale (CDS) total score (OR = 1.12). This model was well calibrated (goodness-of-fit test: p = 0.91) and correctly classified 79.7% of the patients. Conclusion: A combination of TUG-time, eCOPD-related admission(s) prior to baseline, currently smoking, FVC, CDS total score, and CIROPD %correct allows clinicians to predict the probability of an eCOPD-related hospitalization.

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Knowledge gaps in patients with COPD and their proxies

Cited by 30 publications

References 33 publications

Enhancing Confidence and Coping with Stigma in an Ambiguous Interaction with Primary Care: A Qualitative Study of People with COPD

Enhancing Confidence and Coping with Stigma in an Ambiguous Interaction with Primary Care: A Qualitative Study of People with COPD

Usefulness and Relevance of an eHealth Tool in Supporting the Self-Management of Chronic Obstructive Pulmonary Disease: Explorative Qualitative Study of a Cocreative Process

Physical, Psychological, and Social Factors Associated with Exacerbation-Related Hospitalization in Patients with COPD

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